At the end of a year I think it is natural to think back to the past year. At this time of the year every channel is playing a 2012 recap. The top ten _______ of 2012. Whenever Jacob and I write our holiday Christmas Letter we are always forced to reflect on the past year of memories.
But for some reason this year has forced me to think through the many events that have happened in the past years to get us to December of 2012.
When I reflect on this year, of course the journey with Cade comes to mind. I am reminded everyday of the miracle that we have. Then I think about how we got here.
Oct. 2004 - Two weeks before I turned 21 I sat in a doctor's office with most of my family present. The doctor patiently answered our many questions about ITP. There was no cure. It is not inherited. I will deal with it for the rest of my life. I would be given steroids, to maintain my blood levels. No, I would not be able to carry children. Yes, I can live a normal life.
Nov. 2004 - Jacob and I elope. He is aware that I will not be able to give him children. We were both open to adoption, if we decided to have children.
Jan. 2008 - I get super sick after a visit to MI. I am referred to Dr. Saleh at Georgia Cancer Specialists.
Mar. 2008 - I secretly fill out the preliminary paperwork for an adoption agency.
Jun. 2008 - First chemo treatments. The drug is not the strongest, but there may be reproductive side effects. We go ahead with the treatments.
Oct. 2008 - I receive the "NO" document from the adoption agency. I called the agency on my lunch break to get a more definite answer, instead of "we regret to inform you, you have not passed the preliminary checkpoints for our adoption process". I was told because I have a chronic blood disorder, I am at a higher risk of dying, therefore they can not approve a baby to be adopted into our household. Still to this day typing those words create tears in my eyes. I told no one for a long time. I saw this letter as a failure. Jacob would not/could not be a father because of me. The amount of rejection I still feel from this letter burns inside of me. I have a lot of anger, still. After researching, and calling a lot of other agencies, I was told the same information over and over again. Jacob and I decide we were not meant to parents, and we would be okay.
Jan. 2012 - Pregnancy test #4 shows yet another positive stripe. We would be parents.
Jan. 2012 - Jacob and I are told there is an 80% chance of miscarriage. My body won't be able to give the embryo the nutrients it needs before the umbilical cord has closed. We shouldn't tell anyone, as it is just harder to explain a miscarriage over and over again. We tell no one.
Late Feb. 2012 - We make it to 12 weeks, and my miscarriage numbers go down to 50%. We are told we can start telling family.
Mar. 2012 - We make it official, as each week passes the doctors say the chances are better and better we are going to be parents.
We all know the rest. Cade is here, and we are blessed in this holiday season. I have been seeing my doctors almost weekly. My platelets are up to 170k and the blood doctor is super happy! Low for a normal person, but really high for someone who didn't even have 10,000 after giving birth.
Both of my doctors are in awe of how quickly my body has recovered. They both were visualizing the worst, while I was visualizing living a normal life. I guess my "live in the fantasy world" playbook was the one to follow.
Then the best news of all. After seeing my OBGYN yesterday, he said he might be willing to talk about me having a second child. We would need to prep my body, and we are talking a few years from now, but he said he would be willing to keep the conversation open.
No one would have guessed in 2004 that we were starting a chain of events that would lead us to this place. Each event was not the easiest to live through, but wow, I am pretty happy to be where I am today.
Friday, December 28, 2012
Tuesday, November 20, 2012
Learning Curve
People, heck strangers, have a lot to say to me, or any other mother for that. I guess they feel like they have some sort of "right" to "help" me through this journey we call motherhood.
I will be the first one to admit Ihad have no real idea what I am doing. Take for instance our new journey to cloth diapers. Our initial thought to try gDiapers was to help the environment. Then the thought of having a diaper pail really grossed me out. I had a nightmare of Lucy, our Jack Russel, getting into the pail and chewing open the dirty, poopy diapers all over my couch. Needless to say I cleaned the couch three times when I woke up and the idea of this disaster has stayed with me.
The idea of cloth really freaked me out too. I hate dirty things, and poop is very dirty. I gag easily, and have been known to vomit from poopy situations. So the idea of scraping poop off of a piece of cloth, made me gag. So we came up with a hybrid. A cloth outside, and a disposable inside. I mean you take out the middle and flush it. Genius.
Many people felt that we wouldn't like the gDiapers. Yes, I had some people tell me this. I mean while looking at them at Babies R Us I was told by a stranger that it was the biggest waste of money. When I asked "why", she said "Why would you want to do cloth when they make plastic?" I mean really?! Well then, of course, your thought process seems well thought out, and caries a lot of evidence. Oh well...
So back the this whole cloth ordeal. We ended up with a lot of disposables, because I had diaper cakes at my showers. So we used them. We had newborn ones which were great because Cade's skinny hips wouldn't fit in the gDiapers yet. Then we moved into the size 1's and we had a whole lot of those in disposable. And then we ran out.
We had plenty of gDiaper inserts, and we had 4 cloth diapers to get us started. So we thought, here we go. And away we went. The first insert we flushed clogged up our plumbing, and Jacob had to go in the basement and take apart some pipes to get the swollen insert out. We kept at it. Every wet diaper Cade had he somehow leaked out. So we went through outfit after outfit. Then we had our first poopy diaper experience with the gDiapers...while in Babies R Us. We changed his diaper in the backseat of the car. It took both of us, we had to change even the cloth part of the diaper, and there were moments Cade was more upside down than laying down. But we managed. And honestly ended up with some side aches from laughing so hard.
Then while looking up gDiapers online we noticed all the pictures of the babies in the diapers had the big G in the back....Cade's G was clearly in the front....
So parents of the year award won't be sitting on our fire place anytime soon, but we are all turned around, we have practiced the flushing (and swishing which is what you have to do to make sure it doesn't clog your pipes), and we have had fewer blow/leak outs. And you know what? We actually like the gDiapers.
The one thing I can say is that this past weekend had more laughter in it than we have had in a long time. Jacob and I laugh, sometimes really hard, at our ability to have no idea what to do in many incidences. Cade is whole new realm to us. Neither one of us ever thought we would have an infant that depended on us. Every experience we have had in the past 12 weeks had been new.
We are still learning. And I don't mind the learning curve. Will Jacob and I do everything right? No way. Actually not even close. We are making up rules, and rituals as we go.
We have no idea what we are doing. We have no idea what will come next. We actually haven't figured out what his cries mean, even though according to every other mother she knew within two weeks. We encourage him to speak loudly, and kick constantly. We make him march to the beat of music. We pretend we are having intelligent conversations with him. I mean he wanted to discuss the vice presidential debate in detail. Who else has a 3 month old is doing that ;) Sometimes we let him stay in his pajamas all day, and other times we let him go with out any pants on. We encourage him to pass gas. I let him hold my finger while he drinks from his bottle. I let him snuggle into my neck when he is so sleepy, he resists sleep.
We don't know if what we are doing is right, but what we do know, we have one awesome kid. Cade is super laid back, sleeps through the night, charms the ladies at daycare, appreciates his sibling animals, loves to watch Law and Order SVU with his mom, and rarely cries. Are we doing the right thing? Who knows? Is Cade one of the happiest babies I have ever met? He sure is.
I will be the first one to admit I
The idea of cloth really freaked me out too. I hate dirty things, and poop is very dirty. I gag easily, and have been known to vomit from poopy situations. So the idea of scraping poop off of a piece of cloth, made me gag. So we came up with a hybrid. A cloth outside, and a disposable inside. I mean you take out the middle and flush it. Genius.
Many people felt that we wouldn't like the gDiapers. Yes, I had some people tell me this. I mean while looking at them at Babies R Us I was told by a stranger that it was the biggest waste of money. When I asked "why", she said "Why would you want to do cloth when they make plastic?" I mean really?! Well then, of course, your thought process seems well thought out, and caries a lot of evidence. Oh well...
So back the this whole cloth ordeal. We ended up with a lot of disposables, because I had diaper cakes at my showers. So we used them. We had newborn ones which were great because Cade's skinny hips wouldn't fit in the gDiapers yet. Then we moved into the size 1's and we had a whole lot of those in disposable. And then we ran out.
We had plenty of gDiaper inserts, and we had 4 cloth diapers to get us started. So we thought, here we go. And away we went. The first insert we flushed clogged up our plumbing, and Jacob had to go in the basement and take apart some pipes to get the swollen insert out. We kept at it. Every wet diaper Cade had he somehow leaked out. So we went through outfit after outfit. Then we had our first poopy diaper experience with the gDiapers...while in Babies R Us. We changed his diaper in the backseat of the car. It took both of us, we had to change even the cloth part of the diaper, and there were moments Cade was more upside down than laying down. But we managed. And honestly ended up with some side aches from laughing so hard.
Then while looking up gDiapers online we noticed all the pictures of the babies in the diapers had the big G in the back....Cade's G was clearly in the front....
So parents of the year award won't be sitting on our fire place anytime soon, but we are all turned around, we have practiced the flushing (and swishing which is what you have to do to make sure it doesn't clog your pipes), and we have had fewer blow/leak outs. And you know what? We actually like the gDiapers.
The one thing I can say is that this past weekend had more laughter in it than we have had in a long time. Jacob and I laugh, sometimes really hard, at our ability to have no idea what to do in many incidences. Cade is whole new realm to us. Neither one of us ever thought we would have an infant that depended on us. Every experience we have had in the past 12 weeks had been new.
We are still learning. And I don't mind the learning curve. Will Jacob and I do everything right? No way. Actually not even close. We are making up rules, and rituals as we go.
We have no idea what we are doing. We have no idea what will come next. We actually haven't figured out what his cries mean, even though according to every other mother she knew within two weeks. We encourage him to speak loudly, and kick constantly. We make him march to the beat of music. We pretend we are having intelligent conversations with him. I mean he wanted to discuss the vice presidential debate in detail. Who else has a 3 month old is doing that ;) Sometimes we let him stay in his pajamas all day, and other times we let him go with out any pants on. We encourage him to pass gas. I let him hold my finger while he drinks from his bottle. I let him snuggle into my neck when he is so sleepy, he resists sleep.
We don't know if what we are doing is right, but what we do know, we have one awesome kid. Cade is super laid back, sleeps through the night, charms the ladies at daycare, appreciates his sibling animals, loves to watch Law and Order SVU with his mom, and rarely cries. Are we doing the right thing? Who knows? Is Cade one of the happiest babies I have ever met? He sure is.
Sunday, November 18, 2012
No one brought balloons
My last chemo treatment didn't go the way I thought it would. Nov. 6 started off a bit different, as I had gotten permission to drive myself to and from treatment that day. I was in a super great mood. I just knew my counts were going to be up. I was chatting it up with my blood nurse, as he tried to put in a port. I should have known something was up, when putting a port in became a 15 minute affair. I learned that 3 of my veins in my left arm have scar tissue and won't be able to give blood any more.
But the fight to get the port in didn't damper my spirits. I joked with the nurses about how this would be my last treatment ever, how they would miss me, and the such. I knew the counts would be high. I had visualized Meredith, my chemo nurse, coming over to tell me. I would have a huge smile on my face, my eyes would twinkle, which they hadn't done for a while, and my face would flush with excitement. I had played this moment out in my mind multiple times.
So while situated in my chemo chair, I was like an actress waiting for her big cue, as I saw Meredith walking over with my count sheet. I could barely contain my smile, as I watched her lips start to move. Then all I could hear was my own breathing. I was looking at Meredith's face. Why wasn't it as excited as I had visualized? Why wasn't I acting out the practiced scene? For some reason my brain hadn't hit the cue like it was suppose to.
I asked Meredith to repeat what the counts were again. As my heart fell out of my chest, my brain registered why it wasn't in a celebratory mood. Not only had my counts not gone up, they had actually dropped. This wasn't possible. My mantra for life is "success is the only option, failure is not". Why wasn't this a success? I hadn't visualized anything other than my counts reaching huge numbers, just like last time. It was going to work. I didn't have a plan in place for my counts not going up.
After I picked my heart up from the floor, I remembered I was in a large room filled with many others receiving chemo. I would not cry in front of them. I swallowed hard, and asked Meredith to get my next order from the doctor.
The rest of treatment was uneventful. I normally try to stay up and chat with those around me, but I just gave into the pre-cocktail, and slept most of the 6 hours. I didn't feel like talking to anyone. Especially not anyone who was receiving good news. I was in a full blown pity party, and pretty angry no one had brought balloons.
This past week has brought on many old ITP symptoms I had almost forgotten existed. First the bruises started showing up. Platelets are made in bone marrow. The first place to bruise is my joints. Large, purple bruises began in my knee pits, then I found some on my hips, and my elbows. Then the bleeding. THIS MIGHT GET GROSS, you have been warned. I started bleeding out of every open hole on my body. The nose bleeds were the hardest to hide. While teaching I went to help a student with a math problem, only to see blood show up on their worksheet. Try calming 24, 8 year-olds, while bleeding yourself. Not an easy task. My ears bleed a bit, and then capillaries exploded in my eyes. Exhaustion took over. Teaching all day, just to come home, and have more papers to grade, and lessons to write, left me with little energy left, which had to be given to Cade. Nausea became a constant, and the migraines started back.
So there are two things that might be going on with my body.
Scenario #1: My counts are actually in normal low range. That means I have enough platelets to actually bruise (when I am low I don't even bruise, only internally bleed). I also do not get bleeding when I a super low, so my counts might actually have gone up in the past week. Only my body still thinks it is low, and so it is reacting to low platelets.
Scenario #2: My counts are much lower than we have been in years. Causing all the symptoms of low platelets.
So I will get an official count tomorrow. I am unsure what the magic number is, and if I am close or not. I am unsure what to even visualize. My heart has been hanging low, along with my attitude. I try to hold it together, but the thought of my sick body makes me hurt inside. I am so beyond ready to be healthy. I am ready for the doctor to tell me I hit the target! I am ready for my counts to level out, and allow me to work on getting my health back full force.
Success is the only option, failure is not
But the fight to get the port in didn't damper my spirits. I joked with the nurses about how this would be my last treatment ever, how they would miss me, and the such. I knew the counts would be high. I had visualized Meredith, my chemo nurse, coming over to tell me. I would have a huge smile on my face, my eyes would twinkle, which they hadn't done for a while, and my face would flush with excitement. I had played this moment out in my mind multiple times.
So while situated in my chemo chair, I was like an actress waiting for her big cue, as I saw Meredith walking over with my count sheet. I could barely contain my smile, as I watched her lips start to move. Then all I could hear was my own breathing. I was looking at Meredith's face. Why wasn't it as excited as I had visualized? Why wasn't I acting out the practiced scene? For some reason my brain hadn't hit the cue like it was suppose to.
I asked Meredith to repeat what the counts were again. As my heart fell out of my chest, my brain registered why it wasn't in a celebratory mood. Not only had my counts not gone up, they had actually dropped. This wasn't possible. My mantra for life is "success is the only option, failure is not". Why wasn't this a success? I hadn't visualized anything other than my counts reaching huge numbers, just like last time. It was going to work. I didn't have a plan in place for my counts not going up.
After I picked my heart up from the floor, I remembered I was in a large room filled with many others receiving chemo. I would not cry in front of them. I swallowed hard, and asked Meredith to get my next order from the doctor.
The rest of treatment was uneventful. I normally try to stay up and chat with those around me, but I just gave into the pre-cocktail, and slept most of the 6 hours. I didn't feel like talking to anyone. Especially not anyone who was receiving good news. I was in a full blown pity party, and pretty angry no one had brought balloons.
This past week has brought on many old ITP symptoms I had almost forgotten existed. First the bruises started showing up. Platelets are made in bone marrow. The first place to bruise is my joints. Large, purple bruises began in my knee pits, then I found some on my hips, and my elbows. Then the bleeding. THIS MIGHT GET GROSS, you have been warned. I started bleeding out of every open hole on my body. The nose bleeds were the hardest to hide. While teaching I went to help a student with a math problem, only to see blood show up on their worksheet. Try calming 24, 8 year-olds, while bleeding yourself. Not an easy task. My ears bleed a bit, and then capillaries exploded in my eyes. Exhaustion took over. Teaching all day, just to come home, and have more papers to grade, and lessons to write, left me with little energy left, which had to be given to Cade. Nausea became a constant, and the migraines started back.
So there are two things that might be going on with my body.
Scenario #1: My counts are actually in normal low range. That means I have enough platelets to actually bruise (when I am low I don't even bruise, only internally bleed). I also do not get bleeding when I a super low, so my counts might actually have gone up in the past week. Only my body still thinks it is low, and so it is reacting to low platelets.
Scenario #2: My counts are much lower than we have been in years. Causing all the symptoms of low platelets.
So I will get an official count tomorrow. I am unsure what the magic number is, and if I am close or not. I am unsure what to even visualize. My heart has been hanging low, along with my attitude. I try to hold it together, but the thought of my sick body makes me hurt inside. I am so beyond ready to be healthy. I am ready for the doctor to tell me I hit the target! I am ready for my counts to level out, and allow me to work on getting my health back full force.
Success is the only option, failure is not
Friday, November 2, 2012
Finally able to move on
My hormones have felt out of whack for a few days. A lot of people told me that after the baby was born, to expect the hormones to be a little crazy. I was told I would cry, get angry, and be happy all within few moments. I was ready and prepared.
I didn't feel out of whack right away. I know what happened though. After Cade was born I went into what I call "military mode". It could be coined "teacher mode" too I guess. These modes are something I have been able to do for as long as I can remember. It is a mental state that I can put myself in, when I want to control what I focus on. I can take my emotions and completely put them aside until I am ready to deal with them at a later time.
I have been placed in some situations that I needed to put emotions aside, and complete a task. While Jacob and I were on our honeymoon our cruise ship tipped on its side. There were 100's injured on the top desks. There was an all call for anyone with medical training to go to the pool desks. Jacob didn't even think twice, and I followed. It was a mess on the top decks, and yet we were able to think clearly, and move forward. Teachers are put in these situations all the time. I witnessed one of my students go through a concussion. As I watched my student scream at the top of her lungs, thrash wildly, and repeat incoherent phrases, I was able to call 911, her mother, and talk to the paramedics with exactly what was going on. It wasn't until she was loaded into the ambulance, and I was left alone in the nurses office that I fell to my knees shaking. Not that long ago I was witness to a fellow runner fall, due to a heart problem. I watched as her heart stopped twice. However while in" military mode" I remembered to grab my phone, and we were able to contact her husband. It wasn't until the next day that I actually dealt with my emotions.
Since Cade was born I have been on the go, go, go. We had family over. Then when I was left to my own, I had at least 2 doctor appointments a week, I had play dates, and of course a new born to keep my attention. I was also focusing on the marathon, and then I actually ran the marathon. Cade and I spent a week in MI, and that was followed with my sister here for a week. I only had two more weeks left before I returned to school, and within that time I had chemo treatments once a week. Then I had to focus on getting back into the classroom. Which leaves me here...tonight...on the couch, alone.
The tears started over the weekend. I clicked on a photo/video of a friend who had also recently had a baby. They had put together some photos/video of their time in the hospital, the birth, right after the birth, and tons of pictures of the baby in the hospital. Jacob noticed my tears and asked why I was crying. When I wouldn't answer him, he looked over my shoulder to see what I was looking at. He clicked the mouse, and the video stopped. He looked at me and asked "Are you crying because it is a beautiful thing, or because we don't have one?"
He knew I had been saying things like "I'm a bad mother because _____". The blank could be filled with so many different answers. Because I can't breast feed, because I am not breast feeding, because I have to go back to work, because I have to do chemo, because I couldn't hold my baby right away, because I didn't/don't take a ton of pictures, because I check Facebook while feeding him, because he is going to a daycare, because we don't live by family, because he didn't have a bassinet. As I said the list goes on and on.
I was crying because we didn't have a lot of pictures from the hospital, or even right after Cade was born. I don't actually remember much of that night. So with few memories, and no video or pictures, I told Jacob I felt like a bad mom. As tears slid down my face I asked him why we didn't have a lot of pictures. He looked at me like I was crazy, and calmly answered "Because I was too worried about you to take any pictures."
The overall amount of guilt I carry because of my sickness had/has become overwhelming. I felt like I had been cheated out of bonding time. I said Cade is being deprived because I can't breast feed. I am not a real mother because I never got milk to come in. I felt guilt because I get so tired after treatment I struggle to hold him. The day after treatment I am exhausted, which cheats me out of time I could be spending with him. Because of my sickness I have to keep working so we can keep our insurance. Because I have to work, he is at daycare all day. I got home late the past two nights, because there is SO much to do at school. My mind had been filled with so much negativity it was becoming an attitude.
Then it finally happened. While watching a beautiful story on the nurses who saved those babies during Sandy at the New York hospital, I started really crying. I mean sobbing. Jacob was gone at drill, Cade was sleeping, so it was just me in the house. Just me, left to deal with my emotions that I had shoved in the back of my mind, and refused to deal with. There was no one to distract me. There were no plans on the calendar, so I had as long as I need to just let it out. I don't know if it was the realization how lucky I am, or how so many people have lost so much, or my overall empathy towards those who were in the path of Superstorm Sandy, but the tears finally just flowed.
And now I am ready to move on. As I type this I almost feel like I went through the grieving process. I was upset, and angry at some of the wrongs I felt I had been dealt. And now...now I am ready to move on. What happened, happened. I know there is a greater purpose. I am walking the path I am suppose to. Just because it isn't the path I invisioned, it doesn't mean it is the wrong one. I am ready to start back, and not take for granted the smiles I get from Cade. Or the way he sighs when he snuggles his face under my chin. If I had to be honest Cade is going to be just fine, and it would be me who would miss out if I contiued to allow myself to feel cheated.
Now, I am hoping to get my hormones back in check, so I can make it through a news segment without crying.
I didn't feel out of whack right away. I know what happened though. After Cade was born I went into what I call "military mode". It could be coined "teacher mode" too I guess. These modes are something I have been able to do for as long as I can remember. It is a mental state that I can put myself in, when I want to control what I focus on. I can take my emotions and completely put them aside until I am ready to deal with them at a later time.
I have been placed in some situations that I needed to put emotions aside, and complete a task. While Jacob and I were on our honeymoon our cruise ship tipped on its side. There were 100's injured on the top desks. There was an all call for anyone with medical training to go to the pool desks. Jacob didn't even think twice, and I followed. It was a mess on the top decks, and yet we were able to think clearly, and move forward. Teachers are put in these situations all the time. I witnessed one of my students go through a concussion. As I watched my student scream at the top of her lungs, thrash wildly, and repeat incoherent phrases, I was able to call 911, her mother, and talk to the paramedics with exactly what was going on. It wasn't until she was loaded into the ambulance, and I was left alone in the nurses office that I fell to my knees shaking. Not that long ago I was witness to a fellow runner fall, due to a heart problem. I watched as her heart stopped twice. However while in" military mode" I remembered to grab my phone, and we were able to contact her husband. It wasn't until the next day that I actually dealt with my emotions.
Since Cade was born I have been on the go, go, go. We had family over. Then when I was left to my own, I had at least 2 doctor appointments a week, I had play dates, and of course a new born to keep my attention. I was also focusing on the marathon, and then I actually ran the marathon. Cade and I spent a week in MI, and that was followed with my sister here for a week. I only had two more weeks left before I returned to school, and within that time I had chemo treatments once a week. Then I had to focus on getting back into the classroom. Which leaves me here...tonight...on the couch, alone.
The tears started over the weekend. I clicked on a photo/video of a friend who had also recently had a baby. They had put together some photos/video of their time in the hospital, the birth, right after the birth, and tons of pictures of the baby in the hospital. Jacob noticed my tears and asked why I was crying. When I wouldn't answer him, he looked over my shoulder to see what I was looking at. He clicked the mouse, and the video stopped. He looked at me and asked "Are you crying because it is a beautiful thing, or because we don't have one?"
He knew I had been saying things like "I'm a bad mother because _____". The blank could be filled with so many different answers. Because I can't breast feed, because I am not breast feeding, because I have to go back to work, because I have to do chemo, because I couldn't hold my baby right away, because I didn't/don't take a ton of pictures, because I check Facebook while feeding him, because he is going to a daycare, because we don't live by family, because he didn't have a bassinet. As I said the list goes on and on.
I was crying because we didn't have a lot of pictures from the hospital, or even right after Cade was born. I don't actually remember much of that night. So with few memories, and no video or pictures, I told Jacob I felt like a bad mom. As tears slid down my face I asked him why we didn't have a lot of pictures. He looked at me like I was crazy, and calmly answered "Because I was too worried about you to take any pictures."
The overall amount of guilt I carry because of my sickness had/has become overwhelming. I felt like I had been cheated out of bonding time. I said Cade is being deprived because I can't breast feed. I am not a real mother because I never got milk to come in. I felt guilt because I get so tired after treatment I struggle to hold him. The day after treatment I am exhausted, which cheats me out of time I could be spending with him. Because of my sickness I have to keep working so we can keep our insurance. Because I have to work, he is at daycare all day. I got home late the past two nights, because there is SO much to do at school. My mind had been filled with so much negativity it was becoming an attitude.
Then it finally happened. While watching a beautiful story on the nurses who saved those babies during Sandy at the New York hospital, I started really crying. I mean sobbing. Jacob was gone at drill, Cade was sleeping, so it was just me in the house. Just me, left to deal with my emotions that I had shoved in the back of my mind, and refused to deal with. There was no one to distract me. There were no plans on the calendar, so I had as long as I need to just let it out. I don't know if it was the realization how lucky I am, or how so many people have lost so much, or my overall empathy towards those who were in the path of Superstorm Sandy, but the tears finally just flowed.
And now I am ready to move on. As I type this I almost feel like I went through the grieving process. I was upset, and angry at some of the wrongs I felt I had been dealt. And now...now I am ready to move on. What happened, happened. I know there is a greater purpose. I am walking the path I am suppose to. Just because it isn't the path I invisioned, it doesn't mean it is the wrong one. I am ready to start back, and not take for granted the smiles I get from Cade. Or the way he sighs when he snuggles his face under my chin. If I had to be honest Cade is going to be just fine, and it would be me who would miss out if I contiued to allow myself to feel cheated.
Now, I am hoping to get my hormones back in check, so I can make it through a news segment without crying.
Monday, October 29, 2012
Stuck in the in-between
I was/am not naive to think that all baby weight falls off with the baby. I knew it would be hard. I still am aware that it is/will be hard. But I feel frumpy. I feel like my skin is forever stretched.
I am stuck in the in between. I can't fit in my maternity clothes, as they fall down and make me look super frumpy. But in the same breath I can't fit in my pre-baby clothes, as they are too tight. So what is one to do?
I start work on Thursday.
I can't wear the maternity clothes I bought, and wore for the past 7 months. (On a side note, one of the best things I did was buy a few staple outfits in maternity clothes early on in the pregnancy. I wore those clothes for 7 months of pregnancy and almost a month and half after. So I almost got a full 9 months out of my purchases. I didn't buy too many outfits, but for what money I did spend I felt like I got my money worth.) But those are just too baggy now. They are all washed and placed in a storage bin, awaiting their next move, and who knows what that is yet.
Then, in my closet, I am left with my pre-Cade clothes. Most shirts fit...ohhh-kayyyy...., but they cling to the belly region, the area I am trying not to highlight. But my pants...no way. I have quite a bit of weight still hanging on my hips, and from what I gather my hips may have widened from birth. I am okay with the widening of the hips. Has anyone checked out Cade's shoulders? I mean I am a pretty small framed chick, and he has long limbs, and broad shoulders. I am proud I gave birth to him. I also remember the doctor having to pull, yes with his hands he pulled apart, my pelvis toward the end of labor. So I am okay that my hips might be wider, but I know there is some weight still hanging on.
I am super sensitive to this issue because I had to work so hard, only 3 years ago, to loose the 45 pounds Prednisone packed on me the last time I was on high dosage. I joined Weight Watchers, I started Get Fit Atlanta, I started running on a regular basis. I had just gotten to my pre-sickness weight, about 3 months before I found out I was pregnant. I worked 3.5 years to get there.
Anyone who has been on a weight loss journey can tell you it takes dedication, commitment, and there are disappointments. You have to say no to some indulgences, you have to make the time to work out. You make a life style change, which I still have today.
Overall I only gained 45 pounds with Cade. That is almost exactly what the doctors wanted me to gain. I was super happy. But then I got sick again. At first the weight came off quickly. I lost 15 lbs within the first 2 weeks. But then the dosage of Prednisone dosage went up, and the weight stopped coming off. I haven't gained more, but I haven't been able to loose any.
So I am at a stuck point. I don't want to buy more clothes, but all I am left with in the closet are too big, or too small outfits. I am off Prednisone, and only 2 more treatments left, which means the weight will come off...but how long will it take? Last time it was 3 years....
So being stuck in the in-between I went out and got two pairs of work pants, some shirts, and two pairs of jeans. I hope these will get me through until I can fit into my full wardrobe that will sit, unused, in my closet for a few more months.
I have goals, and the determination. I know it is only 9 weeks post-baby, I am not completely delusional. But maybe someone should come out with a line of maternity clothes that are marked like baby clothes. 0-3 months after birth, 3 months, 3-6 months after birth, ect... You could sell the same shirt in a bundle of the different sizes. I know this makes no sense as everyone's body is different, but man the clothing industry makes bank off of us pregnant ladies. I like to figure out ways I can stick it to the man anyway I can....
So the plan...go to work rocking my new outfits. Rotate the outfits. Try not to wear the same outfit on the same day the next week. Get back to Weight Watchers. Become a LifeTime member (again) in the next 12 months. Wear my pre-Cade clothes when I can fit in them again. Smile, and know I gave birth to a healthy baby boy. Be proud of what my body has been through. And acknowledge I will, someday, be back to my new happy weight.
I am stuck in the in between. I can't fit in my maternity clothes, as they fall down and make me look super frumpy. But in the same breath I can't fit in my pre-baby clothes, as they are too tight. So what is one to do?
I start work on Thursday.
I can't wear the maternity clothes I bought, and wore for the past 7 months. (On a side note, one of the best things I did was buy a few staple outfits in maternity clothes early on in the pregnancy. I wore those clothes for 7 months of pregnancy and almost a month and half after. So I almost got a full 9 months out of my purchases. I didn't buy too many outfits, but for what money I did spend I felt like I got my money worth.) But those are just too baggy now. They are all washed and placed in a storage bin, awaiting their next move, and who knows what that is yet.
Then, in my closet, I am left with my pre-Cade clothes. Most shirts fit...ohhh-kayyyy...., but they cling to the belly region, the area I am trying not to highlight. But my pants...no way. I have quite a bit of weight still hanging on my hips, and from what I gather my hips may have widened from birth. I am okay with the widening of the hips. Has anyone checked out Cade's shoulders? I mean I am a pretty small framed chick, and he has long limbs, and broad shoulders. I am proud I gave birth to him. I also remember the doctor having to pull, yes with his hands he pulled apart, my pelvis toward the end of labor. So I am okay that my hips might be wider, but I know there is some weight still hanging on.
I am super sensitive to this issue because I had to work so hard, only 3 years ago, to loose the 45 pounds Prednisone packed on me the last time I was on high dosage. I joined Weight Watchers, I started Get Fit Atlanta, I started running on a regular basis. I had just gotten to my pre-sickness weight, about 3 months before I found out I was pregnant. I worked 3.5 years to get there.
Anyone who has been on a weight loss journey can tell you it takes dedication, commitment, and there are disappointments. You have to say no to some indulgences, you have to make the time to work out. You make a life style change, which I still have today.
Overall I only gained 45 pounds with Cade. That is almost exactly what the doctors wanted me to gain. I was super happy. But then I got sick again. At first the weight came off quickly. I lost 15 lbs within the first 2 weeks. But then the dosage of Prednisone dosage went up, and the weight stopped coming off. I haven't gained more, but I haven't been able to loose any.
So I am at a stuck point. I don't want to buy more clothes, but all I am left with in the closet are too big, or too small outfits. I am off Prednisone, and only 2 more treatments left, which means the weight will come off...but how long will it take? Last time it was 3 years....
So being stuck in the in-between I went out and got two pairs of work pants, some shirts, and two pairs of jeans. I hope these will get me through until I can fit into my full wardrobe that will sit, unused, in my closet for a few more months.
I have goals, and the determination. I know it is only 9 weeks post-baby, I am not completely delusional. But maybe someone should come out with a line of maternity clothes that are marked like baby clothes. 0-3 months after birth, 3 months, 3-6 months after birth, ect... You could sell the same shirt in a bundle of the different sizes. I know this makes no sense as everyone's body is different, but man the clothing industry makes bank off of us pregnant ladies. I like to figure out ways I can stick it to the man anyway I can....
So the plan...go to work rocking my new outfits. Rotate the outfits. Try not to wear the same outfit on the same day the next week. Get back to Weight Watchers. Become a LifeTime member (again) in the next 12 months. Wear my pre-Cade clothes when I can fit in them again. Smile, and know I gave birth to a healthy baby boy. Be proud of what my body has been through. And acknowledge I will, someday, be back to my new happy weight.
Thursday, October 25, 2012
To commit or not....
Cade starts daycare, oopps I mean, childcare next week. My sister gets so mad when I say daycare, as she says "We don't care for days, we care for children." Yes, true, okay, so Cade will go to childcare.
When Jacob and I went on a search for what we would do when I had to return to work, it was overwhelming. There are so many options. We had to decide if we wanted to have someone come in, like a nanny, did we want an at homeday childcare, something private, something public, and then of course location, location, location. I did tons of research online, and went to at least 10 different places for tours and interviews. And of course one doesn't want to admit it, but cost does play a part in the decision.
Jacob and I settled on a public, national chain childcare center. The location we picked isn't the closest, or the most convenient, but we really liked the manager, and the infant lead teacher. Bonus points were made that there was a large, well taken care of fish tank in the lobby.
But as the big week comes closer, we had to revisit our budget. I am a budget queen. I am sure that has come up before. We are finally squared away with all of Cade's hospital bills, mine are another story, but we have to start paying for Cade to be watched, so we had to revisit where our money is allotted.
I am going to be blunt here. Having a kid is expensive. Jacob and I knew that going in. I can't say we were taken by surprise. We have read all of the articles about how much it will cost to put your child through college, or even just to have them live under your house for 18 years. But a few things threw us for a loop. We had to start buying formula right away. My hope was to breast feed for the first year, and that didn't happen. We had to buy formula from day one. Then of course there are they diapers. He is still too skinny for his g-diapers ( I am hoping within the next week he will start using those), so he uses disposable newborns. He goes through 11 diapers a day....a day people. Then of course you have the wipes. For those of you without kids we are talking about $200 for just those items for a month. Then add childcare.....
I had a lot of fun, yes fun, I know I am a nerd, reorganizing the budget. I use Excel, and I have a lot of formulas, and I love looking at our finances. So as I was in a finance state of mind, I took some time to look on Pinterest. I have no idea what I would have filled my at-home-mommy-time without Pinterest. I created so many projects, and my house is super clean because of all of the hints I found. And then I came across this Pin.
Couponing....
From that Pin I started to get around, and I ended up here. Couponing for beginners - which I am....sort of. I get the Sunday paper. I cut out what we need. I use online, digital coupons, and most everything we purchase from toiletries, baby items, cleaning supplies, to groceries we have coupons for. But I haven't completely committed to this.
After reading this website, many times over, I have decided it might be time to fully commit. I am a little shy about getting this started, but come Sunday you will find me with a 3 ring binder, cutting out every, yes every, coupon. I am still considering the baseball card organizers, as I would have to actually buy them, and I am not 100% sure that is the best way to organize things yet.
I saw one episode of that Extreme Couponing show, and the two big things that stuck out in my mind, was the stock pile of toothpaste in the gararge (is that creepy to anyone else?), and that one of the ladies said that she spent no less than 15 hours a week "couponing". So my thoughts on couponing before was " What in the world would I do with all that __________ (insert any of the many items one can buy with coupons)" and "Where does one find the time to do it?"
So here I am admitting that I am going to try this. This website has it mapped it out for a few weeks, and I guess I will follow this plan. It scares me.... I like to put my all into anything I do....I might get a bit crazy about this. I might become the crazy lady jumping up and down at the register about how much money she just saved. Please don't stare if you happen upon me while shopping.
And then there are moments I think I might be putting too much on my plate. Next week I go back to work, Cade startsday childcare, I will be cleared to run starting Saturday, and now I am becoming a couponer...
When Jacob and I went on a search for what we would do when I had to return to work, it was overwhelming. There are so many options. We had to decide if we wanted to have someone come in, like a nanny, did we want an at home
Jacob and I settled on a public, national chain childcare center. The location we picked isn't the closest, or the most convenient, but we really liked the manager, and the infant lead teacher. Bonus points were made that there was a large, well taken care of fish tank in the lobby.
But as the big week comes closer, we had to revisit our budget. I am a budget queen. I am sure that has come up before. We are finally squared away with all of Cade's hospital bills, mine are another story, but we have to start paying for Cade to be watched, so we had to revisit where our money is allotted.
I am going to be blunt here. Having a kid is expensive. Jacob and I knew that going in. I can't say we were taken by surprise. We have read all of the articles about how much it will cost to put your child through college, or even just to have them live under your house for 18 years. But a few things threw us for a loop. We had to start buying formula right away. My hope was to breast feed for the first year, and that didn't happen. We had to buy formula from day one. Then of course there are they diapers. He is still too skinny for his g-diapers ( I am hoping within the next week he will start using those), so he uses disposable newborns. He goes through 11 diapers a day....a day people. Then of course you have the wipes. For those of you without kids we are talking about $200 for just those items for a month. Then add childcare.....
I had a lot of fun, yes fun, I know I am a nerd, reorganizing the budget. I use Excel, and I have a lot of formulas, and I love looking at our finances. So as I was in a finance state of mind, I took some time to look on Pinterest. I have no idea what I would have filled my at-home-mommy-time without Pinterest. I created so many projects, and my house is super clean because of all of the hints I found. And then I came across this Pin.
Couponing....
From that Pin I started to get around, and I ended up here. Couponing for beginners - which I am....sort of. I get the Sunday paper. I cut out what we need. I use online, digital coupons, and most everything we purchase from toiletries, baby items, cleaning supplies, to groceries we have coupons for. But I haven't completely committed to this.
After reading this website, many times over, I have decided it might be time to fully commit. I am a little shy about getting this started, but come Sunday you will find me with a 3 ring binder, cutting out every, yes every, coupon. I am still considering the baseball card organizers, as I would have to actually buy them, and I am not 100% sure that is the best way to organize things yet.
I saw one episode of that Extreme Couponing show, and the two big things that stuck out in my mind, was the stock pile of toothpaste in the gararge (is that creepy to anyone else?), and that one of the ladies said that she spent no less than 15 hours a week "couponing". So my thoughts on couponing before was " What in the world would I do with all that __________ (insert any of the many items one can buy with coupons)" and "Where does one find the time to do it?"
So here I am admitting that I am going to try this. This website has it mapped it out for a few weeks, and I guess I will follow this plan. It scares me.... I like to put my all into anything I do....I might get a bit crazy about this. I might become the crazy lady jumping up and down at the register about how much money she just saved. Please don't stare if you happen upon me while shopping.
And then there are moments I think I might be putting too much on my plate. Next week I go back to work, Cade starts
Tuesday, October 23, 2012
May your past be the sound of your feet upon the ground
The title comes from a new song I am semi obsessed with, Carry On, by Fun. I love music on many different levels. That might be why I am a die-hard band dork. Music allows an expression that I (and maybe you) can't get through any other means. I love listening to many different kinds of music, anything from Ella Fitzgerald, to Queen, to Eminem, to Jack Johnson, to the Broadway play Blood Brothers (and Wicked, and Rent), and of course my favorite artists the Black Eyed Peas. I love dissecting lyrics. I think lyrics can mean different things to different people. So as an outlet to frustrations, or celebrations I always find solace by connecting to different songs. Here are the lyrics to Carry On, and my personal interpretation to the song.
Carry on
Well I woke up to the sound of silence
The cars were cutting like knives in a fist fight
And I found you with a bottle of wine
Your head in the curtains
And heart like the fourth of July
You swore and said
We are not
We are not shining stars
This I know
Cause I never said we are
----> This means that you find your friend in a bad place. This person has been through a lot and has come to realize that there is not much we can do about it in this life. I don't connect this verse to anyone inparticular, but it could represent how I have felt at times. Like I am not a shining star, and we are not because I have said it. This part of the song is the set up for why the artist is signing the rest.
Though I've never been through hell like that
I've closed enough windows
To know you can never look back
--> This is someone talking to me. I get versions of this lyric a lot. A lot of people tell me they haven't been through what I am going through, but they know from their own experience that you have to move on. I loved the idea of closing the window and not looking back. This experience in my life is just that...happy or sad eventually you have to close the door on all experiences and move on.
If you're lost and alone
Or you're sinking like a stone
Carry on
May your past be the sound
Of your feet upon the ground
Carry on
Carry on, carry on
--> This is my favorite part of the whole song. Not really they lost and alone part. I know where I am, and I feel very fortunate to be surrounded by family and friends. But the your sinking like a stone, you must just carry on. Then I LOVE the next part. To me this means all of my experiences in the past will help me put one foot in front of the other to get through what I am going through right now. And then of course I tie in running (because I truly do love it) and I see myself become mentally and physically strong by putting my feet upon the ground, and running through whatever is thrown at me.
So I met up with some friends
At the edge of the night
At a bar off 75
And we talked and talked
About how our parents will die
All our neighbours and wives
--> This just means that the artist is chatting it up with friends, and making sure to take advantage of people that are around you. This is a reminder to me to make sure I utilize the friends I have down here in GA. My family away from family.
But I like to think
I can cheat it all
To make up for the times I've been cheated on
And it's nice to know
When I was left for dead
I was found and now I don't roam these streets
I am not the ghost you want of me
--> I love the cheated on part. Sometimes I do think I can cheat life, as I do feel I have been cheated out of many things in life. I have had to battle so much at way too young of an age. Because of ITP I have missed out on life experiences. I have spent way too much time being sick. I was cheated out of normal life experiences. And yet I have come through all the "cheats" stronger than ever, and now I don't "roam" the streets, lost, expecting things to be handed to me, because I was dealt a different hand. I am not a ghost, I am a whole Amanda.
If you're lost and alone
Or you're sinking like a stone
Carry on
May your past be the sound
Of your feet upon the ground
Carry on
--> See the chorus part above, but again a visualization of me running on a cool, sunny morning always is in my mind.
Woah
My head is on fire
But my legs are fine
Cause after all they are mine
Lay your clothes down on the floor
Close the door
Hold the phone
Show me how
No one's ever gonna stop us now
--> HAHAH! Is this guy on Prednisone too?? His head is on fire, which means I can't calm my brain down, it is all a jumbled mess. But his legs are fine...mine too! There are times I feel completly out of control, but I am capable of running, and do. My legs are just fine! Oh, and by the way no one is ever going to stop me now!!
Cause we are
We are shining stars
We are invincible
We are who we are
On our darkest day
When we're miles away
So we'll come
We will find our way home
--> Oh, and I AM A SHINING STAR! I AM (not really but I like to pretend sometimes) INVINCIBLE. I am who I am, even in the hardest times of life, I am who I am, and I will always find a way to find my way home, which is finding the true Amanda.
If you're lost and alone
Or you're sinking like a stone
Carry on
May your past be the sound
Of your feet upon the ground
Carry on
Carry on, carry on
--> RUNNING RUNNING and more RUNNING! My past has gotten me to where I am, and I will use that to keep my feet on the ground, and move forward.
So that is my interpretation, and would love to hear yours. I do not judge the interpretations of art. I think that is why music is so amazing. We can all hear the same song, and feel totally different about the lyrics. And honestly play this song for me again in 10 years and the meaning could mean something totally different.
All that being typed out, I went to the doctors today. My platelets did drop (I am shutting the window on that and not looking back). The doctor has ordered the remaining three (I have two more after today) treatments. He was angry about the Prednisone drop-it-like-it-is-hot decision, and pleaded with me to go back on 5 mg, and I said, I won't, and don't plan on doing it (my head will not be on fire anytime soon). The only big excitement at treatment was most of the veins in my left arm have collapsed. Because I am right handed, so they try to put the port in my left arm. But I have been poked too much. But James (my vampire nurse) was able to get one to come up so he tried it. He went straight through causing massive bruising. We were able to stop the bleeding, and the bruises have gone down some already. So all in all, not eventful at all.
So friends I will need to ask for some help. I will need:
Someone to pick Cade ad I up at 8:15 on Tuesdays the 30th and the 6th. We will drop Cade off at childcare, and then drop me off at the doctors at Northside.
I will need someone to pick me up around 2:30 (I can wait in the office until later too, as I know that is mid afternoon and inconvenient for most people) on both of those dates. You would pick me up, and then pick up Cade and drop me back off at home.
Please get a hold of me if you would like to help. I will be in debt to you, and will look for ways to repay you for sure :)
Carry on
Well I woke up to the sound of silence
The cars were cutting like knives in a fist fight
And I found you with a bottle of wine
Your head in the curtains
And heart like the fourth of July
You swore and said
We are not
We are not shining stars
This I know
Cause I never said we are
----> This means that you find your friend in a bad place. This person has been through a lot and has come to realize that there is not much we can do about it in this life. I don't connect this verse to anyone inparticular, but it could represent how I have felt at times. Like I am not a shining star, and we are not because I have said it. This part of the song is the set up for why the artist is signing the rest.
Though I've never been through hell like that
I've closed enough windows
To know you can never look back
--> This is someone talking to me. I get versions of this lyric a lot. A lot of people tell me they haven't been through what I am going through, but they know from their own experience that you have to move on. I loved the idea of closing the window and not looking back. This experience in my life is just that...happy or sad eventually you have to close the door on all experiences and move on.
If you're lost and alone
Or you're sinking like a stone
Carry on
May your past be the sound
Of your feet upon the ground
Carry on
Carry on, carry on
--> This is my favorite part of the whole song. Not really they lost and alone part. I know where I am, and I feel very fortunate to be surrounded by family and friends. But the your sinking like a stone, you must just carry on. Then I LOVE the next part. To me this means all of my experiences in the past will help me put one foot in front of the other to get through what I am going through right now. And then of course I tie in running (because I truly do love it) and I see myself become mentally and physically strong by putting my feet upon the ground, and running through whatever is thrown at me.
So I met up with some friends
At the edge of the night
At a bar off 75
And we talked and talked
About how our parents will die
All our neighbours and wives
--> This just means that the artist is chatting it up with friends, and making sure to take advantage of people that are around you. This is a reminder to me to make sure I utilize the friends I have down here in GA. My family away from family.
But I like to think
I can cheat it all
To make up for the times I've been cheated on
And it's nice to know
When I was left for dead
I was found and now I don't roam these streets
I am not the ghost you want of me
--> I love the cheated on part. Sometimes I do think I can cheat life, as I do feel I have been cheated out of many things in life. I have had to battle so much at way too young of an age. Because of ITP I have missed out on life experiences. I have spent way too much time being sick. I was cheated out of normal life experiences. And yet I have come through all the "cheats" stronger than ever, and now I don't "roam" the streets, lost, expecting things to be handed to me, because I was dealt a different hand. I am not a ghost, I am a whole Amanda.
If you're lost and alone
Or you're sinking like a stone
Carry on
May your past be the sound
Of your feet upon the ground
Carry on
--> See the chorus part above, but again a visualization of me running on a cool, sunny morning always is in my mind.
Woah
My head is on fire
But my legs are fine
Cause after all they are mine
Lay your clothes down on the floor
Close the door
Hold the phone
Show me how
No one's ever gonna stop us now
--> HAHAH! Is this guy on Prednisone too?? His head is on fire, which means I can't calm my brain down, it is all a jumbled mess. But his legs are fine...mine too! There are times I feel completly out of control, but I am capable of running, and do. My legs are just fine! Oh, and by the way no one is ever going to stop me now!!
Cause we are
We are shining stars
We are invincible
We are who we are
On our darkest day
When we're miles away
So we'll come
We will find our way home
--> Oh, and I AM A SHINING STAR! I AM (not really but I like to pretend sometimes) INVINCIBLE. I am who I am, even in the hardest times of life, I am who I am, and I will always find a way to find my way home, which is finding the true Amanda.
If you're lost and alone
Or you're sinking like a stone
Carry on
May your past be the sound
Of your feet upon the ground
Carry on
Carry on, carry on
--> RUNNING RUNNING and more RUNNING! My past has gotten me to where I am, and I will use that to keep my feet on the ground, and move forward.
So that is my interpretation, and would love to hear yours. I do not judge the interpretations of art. I think that is why music is so amazing. We can all hear the same song, and feel totally different about the lyrics. And honestly play this song for me again in 10 years and the meaning could mean something totally different.
All that being typed out, I went to the doctors today. My platelets did drop (I am shutting the window on that and not looking back). The doctor has ordered the remaining three (I have two more after today) treatments. He was angry about the Prednisone drop-it-like-it-is-hot decision, and pleaded with me to go back on 5 mg, and I said, I won't, and don't plan on doing it (my head will not be on fire anytime soon). The only big excitement at treatment was most of the veins in my left arm have collapsed. Because I am right handed, so they try to put the port in my left arm. But I have been poked too much. But James (my vampire nurse) was able to get one to come up so he tried it. He went straight through causing massive bruising. We were able to stop the bleeding, and the bruises have gone down some already. So all in all, not eventful at all.
So friends I will need to ask for some help. I will need:
Someone to pick Cade ad I up at 8:15 on Tuesdays the 30th and the 6th. We will drop Cade off at childcare, and then drop me off at the doctors at Northside.
I will need someone to pick me up around 2:30 (I can wait in the office until later too, as I know that is mid afternoon and inconvenient for most people) on both of those dates. You would pick me up, and then pick up Cade and drop me back off at home.
Please get a hold of me if you would like to help. I will be in debt to you, and will look for ways to repay you for sure :)
Monday, October 22, 2012
I had to do it
This post is going to anger some of you. I have considered not posting it. But for the first time since August I am clear headed enough to actually write a blog, so I felt I needed to celebrate a little bit.
I am clear headed because I am off Prednisone. The doctor does not know yet....
I had to do it. I am normally a rule follower. If someone asks me to do something, I do it. I am a pleaser. I like to do what others ask of me. But I couldn't take it any longer. The doctor took me down to 10mg of Prednisone last week Monday. He said "Take 10mg every night." To put this in perspective, I should have been super happy. I was on upwards of 100 mg not too long ago. But I have been "weaning off" since two weeks after Cade was born. When I got home Monday I went to the internet to look up how long "on average" it takes to wean off 10 mg, of this devilish drug.
So after looking on multiple sites, it looked like I was going to have to fight with this drug for five more weeks. FIVE. MORE.WEEKS. I couldn't do it one second longer....
I wanted to have a clear head, a mind that could shut off. I didn't want to be up all night, and not because of Cade. My teeth had become so sensitive I couldn't even drink luke warm water, without pain shooting through my spine. My face is so water logged, I have no collar bones, and my sunglasses can't sit on my face correctly because my cheeks are so blown up, that they hit the bottom of the frames. I wanted to know what it was like to go through a day without a migraine. I wanted to wear my wedding band again, as my fingers are still holding onto so much water I can't get the bands over my knuckle. I wanted my anxiety to be lower. I didn't want to be freaking out about everything. I wanted to get control of my OCD again, as Trisha was pointing out many of my quirks that hadn't shown up for 15 plus years.
And really...this big reason...there is a chance that the Prednisone is keeping my levels high. I can't risk Prednisone keeping me "healthy" and me holding off on treatments until it is all out of my system. I would be back to school, as I go back next week Thursday. I would have to get a sub, for a class that has already not seen me enough. I would have to write plans, which is a huge stresser on me. I wouldn't be 100% as I can promise I would be back to work the day after a treatment, just so I wouldn't miss yet another day, and have to write plans. That drive could hinder my recuperation, which could cause me to get sicker, keeping me out longer, causing me to stress more.....
Okay, okay I think we all get the general idea there.
So last Monday I made the executive decision to NOT take any of my Prednisone. Not a single pill, not a half pill, not a pill every other day. I went cold turkey. Not a drop since the 15th.
Now, on all those websites I visited, I also read about the consequences of taking yourself off Prednisone too quickly. And yet, I felt the positive would outweigh any negative that could come out of this.
The first 5 days, all last week, the withdrawl was horrible. The migraines were the worst I have had for as long as I can remember. I was so hungry I am pretty sure I ate more than I weigh each day. And I will say I didn't eat my weight in apples, but in things like Blizzard Cakes, and puppy chow...
But then it happened! I woke up without pain. I almost didn't know what to do. I got up to use the restroom, and when I opened my eyes I relaized there was no pain shooting through them. I know I stopped breathing for a few moments. I stood in the doorway with my mouth hanging open. I didn't want to take another step, as I knew the pain would come back. But as I walked back to bed, the pain didn't return. I actually cried myself back to sleep. I knew the Prednisone was leaving my body.
I am on day two of no migraine. My teeth are already a lot less sensitive. I have noticed that I am actually watching tv. Not just staring at the movements, and having my brain whirl around, but I am following the story lines. I haven't tried reading yet, as I am still a little gun shy, and think that the concentrating will bring back the pain. But it is leaving my system. And I am starting to feel free again!
I plan on telling the doctor tomorrow. I know he will be angry, but I did what I needed to for me. I know my body better than anyone. I am more in-tune with what goes on inside and out than the average person. I told Jacob yesterday (yes, he knew I was doing this, and no he didn't try to convince me otherwise...probably because I told him it wasn't worth him wasting his breath, I wouldn't listen to him anyway.....) that even if I were to get a brain tumor from taking myself off this drug too fast, I still wouldn't regret it.
Waking up without any pain, has been worth it. We will find out tomorrow what problems I may have caused....but I will take it. I will take every consequence head on, I will own it..... I just couldn't take one more day of swallowing that pill.
I am clear headed because I am off Prednisone. The doctor does not know yet....
I had to do it. I am normally a rule follower. If someone asks me to do something, I do it. I am a pleaser. I like to do what others ask of me. But I couldn't take it any longer. The doctor took me down to 10mg of Prednisone last week Monday. He said "Take 10mg every night." To put this in perspective, I should have been super happy. I was on upwards of 100 mg not too long ago. But I have been "weaning off" since two weeks after Cade was born. When I got home Monday I went to the internet to look up how long "on average" it takes to wean off 10 mg, of this devilish drug.
So after looking on multiple sites, it looked like I was going to have to fight with this drug for five more weeks. FIVE. MORE.WEEKS. I couldn't do it one second longer....
I wanted to have a clear head, a mind that could shut off. I didn't want to be up all night, and not because of Cade. My teeth had become so sensitive I couldn't even drink luke warm water, without pain shooting through my spine. My face is so water logged, I have no collar bones, and my sunglasses can't sit on my face correctly because my cheeks are so blown up, that they hit the bottom of the frames. I wanted to know what it was like to go through a day without a migraine. I wanted to wear my wedding band again, as my fingers are still holding onto so much water I can't get the bands over my knuckle. I wanted my anxiety to be lower. I didn't want to be freaking out about everything. I wanted to get control of my OCD again, as Trisha was pointing out many of my quirks that hadn't shown up for 15 plus years.
And really...this big reason...there is a chance that the Prednisone is keeping my levels high. I can't risk Prednisone keeping me "healthy" and me holding off on treatments until it is all out of my system. I would be back to school, as I go back next week Thursday. I would have to get a sub, for a class that has already not seen me enough. I would have to write plans, which is a huge stresser on me. I wouldn't be 100% as I can promise I would be back to work the day after a treatment, just so I wouldn't miss yet another day, and have to write plans. That drive could hinder my recuperation, which could cause me to get sicker, keeping me out longer, causing me to stress more.....
Okay, okay I think we all get the general idea there.
So last Monday I made the executive decision to NOT take any of my Prednisone. Not a single pill, not a half pill, not a pill every other day. I went cold turkey. Not a drop since the 15th.
Now, on all those websites I visited, I also read about the consequences of taking yourself off Prednisone too quickly. And yet, I felt the positive would outweigh any negative that could come out of this.
The first 5 days, all last week, the withdrawl was horrible. The migraines were the worst I have had for as long as I can remember. I was so hungry I am pretty sure I ate more than I weigh each day. And I will say I didn't eat my weight in apples, but in things like Blizzard Cakes, and puppy chow...
But then it happened! I woke up without pain. I almost didn't know what to do. I got up to use the restroom, and when I opened my eyes I relaized there was no pain shooting through them. I know I stopped breathing for a few moments. I stood in the doorway with my mouth hanging open. I didn't want to take another step, as I knew the pain would come back. But as I walked back to bed, the pain didn't return. I actually cried myself back to sleep. I knew the Prednisone was leaving my body.
I am on day two of no migraine. My teeth are already a lot less sensitive. I have noticed that I am actually watching tv. Not just staring at the movements, and having my brain whirl around, but I am following the story lines. I haven't tried reading yet, as I am still a little gun shy, and think that the concentrating will bring back the pain. But it is leaving my system. And I am starting to feel free again!
I plan on telling the doctor tomorrow. I know he will be angry, but I did what I needed to for me. I know my body better than anyone. I am more in-tune with what goes on inside and out than the average person. I told Jacob yesterday (yes, he knew I was doing this, and no he didn't try to convince me otherwise...probably because I told him it wasn't worth him wasting his breath, I wouldn't listen to him anyway.....) that even if I were to get a brain tumor from taking myself off this drug too fast, I still wouldn't regret it.
Waking up without any pain, has been worth it. We will find out tomorrow what problems I may have caused....but I will take it. I will take every consequence head on, I will own it..... I just couldn't take one more day of swallowing that pill.
Friday, October 19, 2012
Moving my pride aside
I am not very good at asking for help. I hold high expectations for myself, which has caused me to convince myself to ask for help shows weakness. I am not weak.
Now my last treatments Jacob went to every one of them. He is an old pro. But this time around Jacob is back in police academy. We all know he MUST be there EVERYDAY, or he will be recycled. Since we have already recycled once...this is really not an option in my mind. So this threw yet another curve in the plan.
So finding myself in this newest predicament, has pushed me into a new realm of trying to bend over backwards and sideways, just so I wouldn't have to write a post like this one. Yet here I am...
Originally the doctor ordered 4 chemo treatments. This all went down a day before I was leaving Atlanta for 10 days. I was able to maneuver my treatments around my travel plans. First obstacle cleared. Rituxian treatments take 6 hours and are given a week apart. I can't take Cade into the chemo room, so next plan: find someone to watch Cade, a week apart. As I looked at my calendar I noticed that, because I was going back to school on a Thursday if I could get my treatments done early in the week I would have 3 weeks I wouldn't have to get a sub. Then as a super bonus I noticed we don't have kids Nov. 6, election day. It became my new plan to find a babysitter for Tuesdays. Luckily our family friend, who lives by the hospital and LOVES keeping Cade, was avaialble for all four Tuesdays. I hated asking. I hated explaining it would be like 6 hours long. But I did it, I let down my pride, and found Cade a place to stay.
The first treatment is always the worst. It has been 4 years since my last treatment. The doctor warned it would be like taking the drug for the first time. Last time, the first treatment knocked me on my butt for 2 days, I had a reaction during the infusion causing the doctor to give me very strong drug, and I lost a lot of hair. So I knew I was going to need help after the first treatment, at least until I could figure out how my body was going to react this time around. Again, I lucked out, as my sister was planning on coming down. Trisha went and sat with me on Tuesday. My body took the drug easily, and they were able to up the speed, so the infusion only took 4 hours, making the whole visit only 6 hours. I didn't have a reaction, and I even woke up long enough to eat some lunch. Afterwards I felt great, but I am not allowed to drive after treatment because I am weak, and they give me hydrocodone, and benedryl, in large doses.
Well, Trisha leaves on Sunday. I have been so lucky to have her here with me, as she has gotten up with Cade, and allowed me to sleep. She loves feeding him, which allows me time to get things done around the house. But she goes home before the next treatment.....
So let me begin with the disclaimer. On Monday I went in for a CBC to make sure I could take the treatment. My platelets had skyrocketed. The doctor was SUPER happy, and almost came bounding into the room. He asked me if I had stopped breastfeeding, and I said yes (he had asked that I be done feeding by the time I came back). He almost smiled, and exclaimed "Well the breastfeeding was literally killing you". He had thought before that the breastfeeding might be creating antibodies, but a doctor doesn't want to tell someone to stop breastfeeding. I guess breastfeeding just wasn't for me. The doctor says he is considering not doing a treatment until later. Then we started discussing other things, like my Prednisone dosage, and we came to the conclusion that my platelets might just be high because of my increased dosage of Prednisone again. So the plan was, possibly, one treatment and be done.
Then on Tuesday, yes the next day, the CBC count showed my platelets had dropped 25,000. So the new plan was do the treatment and then come back next Tuesday and plan on having a treatment, but we might not if my counts are high enough. Well that puts me in quite a prediciment. So here I am...swallowing my pride...and asking for a bit of help.....
On Tuesday, Oct. 23 I need someone to:
Come to my house at 8:15 a.m. and bring Cade and I into Buckhead. We will drop Cade off at the babysitter, and then I will need to be dropped off at Northside for a 9:30 appointment.
I (might) need someone to be at Northside around 2:30 - 3:00 p.m. to pick me up, and then swing by and pick Cade up, and drive us back home to Smyrna. This is a might person as I might not take a treatment which means I will be done at 10 and I won't need anyone later. I would call you by 10 a.m. to let you know if I am having a treatment or not.
So there it is. Please email a.a.larkin@hotmail.com, call me, leave a comment on the blog, or FB message me if you might be able to help. I can't thank you all enough in advance!
--> And yes, this blog is leaving a bad taste in my mouth... I hate doing this....
Now my last treatments Jacob went to every one of them. He is an old pro. But this time around Jacob is back in police academy. We all know he MUST be there EVERYDAY, or he will be recycled. Since we have already recycled once...this is really not an option in my mind. So this threw yet another curve in the plan.
So finding myself in this newest predicament, has pushed me into a new realm of trying to bend over backwards and sideways, just so I wouldn't have to write a post like this one. Yet here I am...
Originally the doctor ordered 4 chemo treatments. This all went down a day before I was leaving Atlanta for 10 days. I was able to maneuver my treatments around my travel plans. First obstacle cleared. Rituxian treatments take 6 hours and are given a week apart. I can't take Cade into the chemo room, so next plan: find someone to watch Cade, a week apart. As I looked at my calendar I noticed that, because I was going back to school on a Thursday if I could get my treatments done early in the week I would have 3 weeks I wouldn't have to get a sub. Then as a super bonus I noticed we don't have kids Nov. 6, election day. It became my new plan to find a babysitter for Tuesdays. Luckily our family friend, who lives by the hospital and LOVES keeping Cade, was avaialble for all four Tuesdays. I hated asking. I hated explaining it would be like 6 hours long. But I did it, I let down my pride, and found Cade a place to stay.
The first treatment is always the worst. It has been 4 years since my last treatment. The doctor warned it would be like taking the drug for the first time. Last time, the first treatment knocked me on my butt for 2 days, I had a reaction during the infusion causing the doctor to give me very strong drug, and I lost a lot of hair. So I knew I was going to need help after the first treatment, at least until I could figure out how my body was going to react this time around. Again, I lucked out, as my sister was planning on coming down. Trisha went and sat with me on Tuesday. My body took the drug easily, and they were able to up the speed, so the infusion only took 4 hours, making the whole visit only 6 hours. I didn't have a reaction, and I even woke up long enough to eat some lunch. Afterwards I felt great, but I am not allowed to drive after treatment because I am weak, and they give me hydrocodone, and benedryl, in large doses.
Well, Trisha leaves on Sunday. I have been so lucky to have her here with me, as she has gotten up with Cade, and allowed me to sleep. She loves feeding him, which allows me time to get things done around the house. But she goes home before the next treatment.....
So let me begin with the disclaimer. On Monday I went in for a CBC to make sure I could take the treatment. My platelets had skyrocketed. The doctor was SUPER happy, and almost came bounding into the room. He asked me if I had stopped breastfeeding, and I said yes (he had asked that I be done feeding by the time I came back). He almost smiled, and exclaimed "Well the breastfeeding was literally killing you". He had thought before that the breastfeeding might be creating antibodies, but a doctor doesn't want to tell someone to stop breastfeeding. I guess breastfeeding just wasn't for me. The doctor says he is considering not doing a treatment until later. Then we started discussing other things, like my Prednisone dosage, and we came to the conclusion that my platelets might just be high because of my increased dosage of Prednisone again. So the plan was, possibly, one treatment and be done.
Then on Tuesday, yes the next day, the CBC count showed my platelets had dropped 25,000. So the new plan was do the treatment and then come back next Tuesday and plan on having a treatment, but we might not if my counts are high enough. Well that puts me in quite a prediciment. So here I am...swallowing my pride...and asking for a bit of help.....
On Tuesday, Oct. 23 I need someone to:
Come to my house at 8:15 a.m. and bring Cade and I into Buckhead. We will drop Cade off at the babysitter, and then I will need to be dropped off at Northside for a 9:30 appointment.
I (might) need someone to be at Northside around 2:30 - 3:00 p.m. to pick me up, and then swing by and pick Cade up, and drive us back home to Smyrna. This is a might person as I might not take a treatment which means I will be done at 10 and I won't need anyone later. I would call you by 10 a.m. to let you know if I am having a treatment or not.
So there it is. Please email a.a.larkin@hotmail.com, call me, leave a comment on the blog, or FB message me if you might be able to help. I can't thank you all enough in advance!
--> And yes, this blog is leaving a bad taste in my mouth... I hate doing this....
Wednesday, October 17, 2012
The Chicago Marathon
I ran the Chicago Marathon for quite a few different reasons. I needed this race more than even I realized.
Jacob, Cade, and I left for Chicago about 2 p.m. on Friday. We had a plan of driving as far as we could, and then stop. Somewhere outside of Atlanta, I realized I had not packed my Nike capris, the pants I was planning on running in. At that point we couldn't turn back, so I went on to call my mom and sister, and hoped one of them could find me the same kind of capris I was used to, and bring them to Chicago for me. We made it to Louisville, and decided to stop just North of the city. I knew the sleep you get two nights before the race is the most important, so I wanted to be able to get a good 7 hours at least.
Saturday I woke well rested, as Cade had slept most of the night, only getting up once. It was so cold when we woke up. We went to breakfast at the hotel, and Jacob and I were dressed in three layers. We got on the road, and our next stop was the Expo. I strapped Cade into the baby backpack, and away we went. While we waited in line for my number, most people must have thought we were in line for Jacob. But then when I walked up the counter, with my ID out, there were three ladies from the next line over that gave out small utterances. One lady asked if I had given birth to the baby. When I shook my head yes, she exclaimed how great I looked. Another woman asked how old the baby was, and when I answered 6 weeks, she looked at her husband and muttered "and I thought I was brave running a year after our baby". I must admit I like giving people something to talk about, but I never want anyone to feel inferior. Anyone out there running is amazing. I wished the woman good luck, and we were off to our hotel.
My sister Trisha, and her husband Rob were already at the hotel, so we checked in and got settled. Trisha came with two different Nike pants to try. The number one race mistake is to run in something new, but I didn't have a choice. I figured one of the capris would work. Jacob's parents found their way to the hotel room, and we picked a place to eat. We were able to meet my Get Fit Atlanta running friends Olga, and Beth for dinner. I had some spaghetti, and garlic bread. We all said goodnight early and off to bed we went.
That night Jacob told me I would have to start telling people I was sick. My family knew that the doctor had ordered chemo. I hadn't told anyone else. Jacob said the dark circles under my eyes were giving my secret away. I was looking sick. This was hard to hear and weighed heavy on my mind. I knew I was playing a game by running this marathon. I knew I might not finish the race. But being the determined person I am, I knew I would give it everything I had.
RACE DAY, Sunday, Oct. 7, 2012
My alarm went off about 4:45 a.m. I was still trying to breast feed, so I got up early to do that. We had told Trisha and Rob to be ready at 6:15 so we could walk to the start. According to google maps we were 1.2 miles away, a 25 minute walk. It was 34 degrees according to my phone. I had decided to wear my (new) capris, my DetermiNation tank top, my compression sleeves, a throw away hat and gloves, and I brought my sunglasses. The walk to the start was so cold. I was starting to get really nervous. I was able to choke down a deli thin with peanut butter, and a Marathon Bar. I had 7, no caffeine, Gels with me. I also was going to run with my phone, chapstick, and Ipod. I started playing head games with myself. I started doubting my training, my decision to try the race, my thought that I was capable of racing under the newest conditions I had become aware of. Negativity started to overwhelm me.
I left Trisha, Rob, Jacob, and Cade, and into the corral area I walked. I had about 30 minutes before the corral closed so I went and stood in line at the potty. I thought I had plenty of time, but as the time ticked away, the line wasn't moving as fast as I had hoped. I took one of my first Gels at 7:15. I got to talking with 3 other ladies, who were also in the charity corral. One was in her 50's and this was her first marathon, she was from Iowa. The younger gal, this was her second time doing Chicago. She had been laid off, broke up with her boyfriend, and lost her apartment all in a week last year. She decided to start training for the race, and enjoyed it so much last year, she was back again. The other woman was in her 40's, lived in Chicago, and she was doing her third marathon, but her first time running Chicago. It was great to hear their stories. This is what I love about races.
I ended up having to run to get in my corral by 7:30. I just made it in, as they closed it off behind me. This freaked me out a little, as I always like to be early, but I just told myself I was in, and just get ready to run. The race had started, and I was at the end of the first wave. We were on our way. I had been having trouble with my Garmin watch for a few weeks, but I had held off on getting a new one, until after Chicago. I wanted the watch just so I could watch my pace, I needed to stay under a 15 minute mile. I didn't care about my overall time, I just didn't want to get pulled off the course.
As I went over the start pad, I felt tears in my eyes. I normally don't get emotional at races, but this race had me all messed up in the head. I knew what I was racing for. I was racing for me. I was going to run this race to prove to myself I am still me. I might be a mom, I might be sick, but somewhere in there was me. Amanda. A strong willed little girl. A stubborn woman. Amanda. This race was a race against myself. I am stronger than all those bad looks I got as I continued to run while pregnant. I was stronger than all those negative comments, about how I wasn't going to a good mother because of my inner fears. I was stronger than all of those people who thought, she can't do it. I am stronger than a diagnosis. I am stronger than a blood count. I am stronger than a number on a piece of paper. As all of these thoughts went racing through my mind, I couldn't help but become tearful. I held it together. I shook my head, to clear my thoughts, and held my head high. This race would be one I would always remember.
At the start of the course we went under an overpass. I was worried my watch would mess up, and sure enough when I made it to the first mile marker, my watch only said I had gone 0.7 miles. So right at mile 1 I figured my watch was screwed up, and I would have to rely on my own body to tell me how I was doing. I saw my spectators right before mile 2, and it was so great to see them! I gave them my hat, and gloves. I don't care what anyone else says, I love having spectators at my races. It is so refreshing to see them! It always brings a smile to my face. I felt really strong as I took off towards LaSalle St.
Chicago has always been a bucket list race, because my dad moved there when I was just 15 years old. Trisha and I spent a lot of time in the city, and we know it quite intimately. I love the city. When I looked over the course I knew I would love this race! I could picture most of the course in my mind. I was really looking forward to enjoying my time running through the city.
The crowd for the first half of the race was amazing. I loved running past the Lincoln Park Zoo, and right past my dad and Gary's house during mile 8. For the first time in 15 years they were not in the city, but just going through the neighborhood was so reassuring. I felt so at home as I ran through the city streets. So many memories came flooding to me. They almost served as a distraction. I ate a Gel at mile 5, 8, and right before 12. At every water stop I got a cup of water, and walked long enough to drink it. This is something I have done at every race, and it is a nice short break. Out of habit I kept checking my watch, and I knew something was wrong as it was saying my pace was between 10:30 and 11:00 minute miles. I knew that couldn't be right. I was hoping I was keeping a fast enough pace, but figured since I hadn't walked, but the water stops, I had to be under my goal. My wonderful spectators were right after the water stop at mile 12. I took off my arm warmers, as the girl from the bathroom line had told me that the second part of the race was not shaded, and the sun was starting to beat down. I heard one of the race officials say it was 44 degrees. I told Jacob that my watch was broken, and it was saying I was doing 10:30 miles. He looked at me, and said, "You are doing 10:30 miles. You need to slow down". I couldn't believe it. I hadn't run that pace since my last pre-pregnancy race, in early Nov. 2011. The other thing I couldn't believe was how great I felt! Slow down....not anytime soon!
As I rounded the corner to the mile 13 marker, I heard my name being called, and there was my bestee Shane, and his wife Diana. I was super pumped to see them! Again, it is just a boost when someone is out there shouting, and cheering for you. I knew I was half way, and I still felt good. I was going to give it my all, and for the first time, I felt like I might make it to the end.
I Geled at mile 14, 16.5, 20 and right before 24. The potty girl was right, and there was little shade on the second part of the course. The crowd thinned between miles 15 and 18. There were always some people out there, but it was thinner. I started to get a little slower around mile 18, and I had to walk inbetween water stops during miles 20-24. I wouldn't say I hit a wall, as I was very determined to finish this race. But I did struggle a little mentally. I just got tired. My hips started hurting. I started beating myself up for the small bits of walking. I tried watching my watch for the pace. I never wanted my pace to say anything above 14 minutes.
Around mile 20 I realized I was going to finish. Even if I had to walk the entire way to the finish I would finish under 6 hours and 30 minutes, the course's maximum time allowed. It was about that time that I thought I might be able to make this a personal record (PR). My previous PR was 5 hours and 45 minutes. As I neared mile 23, I started to become tearful again. I not only was going to finish, I was going to finish with my fastest time for sure.
I saw my beautiful spectators at mile 26. I was back to slow jog at that point, and waved as I went in for the last 0.2. I felt strong. I felt emotionally capable to take on whatever lied in front of me. I would be able to conquer whatever life was ready to throw at me. And I knew this was all true as I crossed the finish line at 5 hours and 6 minutes. No tears at the finish. I wasn't there to cry. I was there to prove to myself I was/am capable. I did that. I owned Chicago!
As I made it through the finishers shoot, the cold hit me. The race ends only 3 blocks in from Lake Michigan, and the coolness was a bitter, brisk, wind. I met up with the family and dressed back up in layers as quickly as possible. We took a few pictures, and back to the hotel we walked.
This race was a great race for me mentally, and emotionally. This race had great entertainment, and crowd support throughout. I almost felt it had more entertainment than the Rock and Roll marathon in Savannah. I thought the race had plenty of water stops, and each one was well manned with volunteers. Everything was marked really well, and the course had plenty to look at. Not to mention it was very flat, and fast. There were ample bathrooms, and the race was well run. I would recommend this race to anyone looking for a great, flat, fun race.
I want to take some time to thank my family, especially Jacob. At any point they could have convinced me not to race, or even got angry at my stubborness to keep training. They didn't. They trusted me enough to know my own body, and to do what I thought was best. Thank you. I would also like to thank my Amber girls. Your support means so much! I know I thought I was crazy at first, but as we all know crazy loves company. Thank you for understanding crazy isn't so bad! And then a final thank you to Get Fit Atlanta coaches. Seriously, without you I wouldn't have made it to half of the training runs. If it would be left to me to map out a course I wouldn't do it. Thank you for having the course figured out, and letting me lag behind for those 6 months while carrying Cade. I truly believe a marathon is never achieved alone. This one was no exception.
I achieved more than a marathon dream when I crossed the finish line. This race was a race to prove to myself I am still in control of my spiraling life. I still hold the key to my own accomplishments. I still am in control....of me. And when I crossed that line, I knew I was ready for anything. So bring it life....this marathon momma is ready!
Jacob, Cade, and I left for Chicago about 2 p.m. on Friday. We had a plan of driving as far as we could, and then stop. Somewhere outside of Atlanta, I realized I had not packed my Nike capris, the pants I was planning on running in. At that point we couldn't turn back, so I went on to call my mom and sister, and hoped one of them could find me the same kind of capris I was used to, and bring them to Chicago for me. We made it to Louisville, and decided to stop just North of the city. I knew the sleep you get two nights before the race is the most important, so I wanted to be able to get a good 7 hours at least.
Saturday I woke well rested, as Cade had slept most of the night, only getting up once. It was so cold when we woke up. We went to breakfast at the hotel, and Jacob and I were dressed in three layers. We got on the road, and our next stop was the Expo. I strapped Cade into the baby backpack, and away we went. While we waited in line for my number, most people must have thought we were in line for Jacob. But then when I walked up the counter, with my ID out, there were three ladies from the next line over that gave out small utterances. One lady asked if I had given birth to the baby. When I shook my head yes, she exclaimed how great I looked. Another woman asked how old the baby was, and when I answered 6 weeks, she looked at her husband and muttered "and I thought I was brave running a year after our baby". I must admit I like giving people something to talk about, but I never want anyone to feel inferior. Anyone out there running is amazing. I wished the woman good luck, and we were off to our hotel.
My sister Trisha, and her husband Rob were already at the hotel, so we checked in and got settled. Trisha came with two different Nike pants to try. The number one race mistake is to run in something new, but I didn't have a choice. I figured one of the capris would work. Jacob's parents found their way to the hotel room, and we picked a place to eat. We were able to meet my Get Fit Atlanta running friends Olga, and Beth for dinner. I had some spaghetti, and garlic bread. We all said goodnight early and off to bed we went.
That night Jacob told me I would have to start telling people I was sick. My family knew that the doctor had ordered chemo. I hadn't told anyone else. Jacob said the dark circles under my eyes were giving my secret away. I was looking sick. This was hard to hear and weighed heavy on my mind. I knew I was playing a game by running this marathon. I knew I might not finish the race. But being the determined person I am, I knew I would give it everything I had.
RACE DAY, Sunday, Oct. 7, 2012
My alarm went off about 4:45 a.m. I was still trying to breast feed, so I got up early to do that. We had told Trisha and Rob to be ready at 6:15 so we could walk to the start. According to google maps we were 1.2 miles away, a 25 minute walk. It was 34 degrees according to my phone. I had decided to wear my (new) capris, my DetermiNation tank top, my compression sleeves, a throw away hat and gloves, and I brought my sunglasses. The walk to the start was so cold. I was starting to get really nervous. I was able to choke down a deli thin with peanut butter, and a Marathon Bar. I had 7, no caffeine, Gels with me. I also was going to run with my phone, chapstick, and Ipod. I started playing head games with myself. I started doubting my training, my decision to try the race, my thought that I was capable of racing under the newest conditions I had become aware of. Negativity started to overwhelm me.
I left Trisha, Rob, Jacob, and Cade, and into the corral area I walked. I had about 30 minutes before the corral closed so I went and stood in line at the potty. I thought I had plenty of time, but as the time ticked away, the line wasn't moving as fast as I had hoped. I took one of my first Gels at 7:15. I got to talking with 3 other ladies, who were also in the charity corral. One was in her 50's and this was her first marathon, she was from Iowa. The younger gal, this was her second time doing Chicago. She had been laid off, broke up with her boyfriend, and lost her apartment all in a week last year. She decided to start training for the race, and enjoyed it so much last year, she was back again. The other woman was in her 40's, lived in Chicago, and she was doing her third marathon, but her first time running Chicago. It was great to hear their stories. This is what I love about races.
I ended up having to run to get in my corral by 7:30. I just made it in, as they closed it off behind me. This freaked me out a little, as I always like to be early, but I just told myself I was in, and just get ready to run. The race had started, and I was at the end of the first wave. We were on our way. I had been having trouble with my Garmin watch for a few weeks, but I had held off on getting a new one, until after Chicago. I wanted the watch just so I could watch my pace, I needed to stay under a 15 minute mile. I didn't care about my overall time, I just didn't want to get pulled off the course.
As I went over the start pad, I felt tears in my eyes. I normally don't get emotional at races, but this race had me all messed up in the head. I knew what I was racing for. I was racing for me. I was going to run this race to prove to myself I am still me. I might be a mom, I might be sick, but somewhere in there was me. Amanda. A strong willed little girl. A stubborn woman. Amanda. This race was a race against myself. I am stronger than all those bad looks I got as I continued to run while pregnant. I was stronger than all those negative comments, about how I wasn't going to a good mother because of my inner fears. I was stronger than all of those people who thought, she can't do it. I am stronger than a diagnosis. I am stronger than a blood count. I am stronger than a number on a piece of paper. As all of these thoughts went racing through my mind, I couldn't help but become tearful. I held it together. I shook my head, to clear my thoughts, and held my head high. This race would be one I would always remember.
At the start of the course we went under an overpass. I was worried my watch would mess up, and sure enough when I made it to the first mile marker, my watch only said I had gone 0.7 miles. So right at mile 1 I figured my watch was screwed up, and I would have to rely on my own body to tell me how I was doing. I saw my spectators right before mile 2, and it was so great to see them! I gave them my hat, and gloves. I don't care what anyone else says, I love having spectators at my races. It is so refreshing to see them! It always brings a smile to my face. I felt really strong as I took off towards LaSalle St.
Chicago has always been a bucket list race, because my dad moved there when I was just 15 years old. Trisha and I spent a lot of time in the city, and we know it quite intimately. I love the city. When I looked over the course I knew I would love this race! I could picture most of the course in my mind. I was really looking forward to enjoying my time running through the city.
The crowd for the first half of the race was amazing. I loved running past the Lincoln Park Zoo, and right past my dad and Gary's house during mile 8. For the first time in 15 years they were not in the city, but just going through the neighborhood was so reassuring. I felt so at home as I ran through the city streets. So many memories came flooding to me. They almost served as a distraction. I ate a Gel at mile 5, 8, and right before 12. At every water stop I got a cup of water, and walked long enough to drink it. This is something I have done at every race, and it is a nice short break. Out of habit I kept checking my watch, and I knew something was wrong as it was saying my pace was between 10:30 and 11:00 minute miles. I knew that couldn't be right. I was hoping I was keeping a fast enough pace, but figured since I hadn't walked, but the water stops, I had to be under my goal. My wonderful spectators were right after the water stop at mile 12. I took off my arm warmers, as the girl from the bathroom line had told me that the second part of the race was not shaded, and the sun was starting to beat down. I heard one of the race officials say it was 44 degrees. I told Jacob that my watch was broken, and it was saying I was doing 10:30 miles. He looked at me, and said, "You are doing 10:30 miles. You need to slow down". I couldn't believe it. I hadn't run that pace since my last pre-pregnancy race, in early Nov. 2011. The other thing I couldn't believe was how great I felt! Slow down....not anytime soon!
As I rounded the corner to the mile 13 marker, I heard my name being called, and there was my bestee Shane, and his wife Diana. I was super pumped to see them! Again, it is just a boost when someone is out there shouting, and cheering for you. I knew I was half way, and I still felt good. I was going to give it my all, and for the first time, I felt like I might make it to the end.
I Geled at mile 14, 16.5, 20 and right before 24. The potty girl was right, and there was little shade on the second part of the course. The crowd thinned between miles 15 and 18. There were always some people out there, but it was thinner. I started to get a little slower around mile 18, and I had to walk inbetween water stops during miles 20-24. I wouldn't say I hit a wall, as I was very determined to finish this race. But I did struggle a little mentally. I just got tired. My hips started hurting. I started beating myself up for the small bits of walking. I tried watching my watch for the pace. I never wanted my pace to say anything above 14 minutes.
Around mile 20 I realized I was going to finish. Even if I had to walk the entire way to the finish I would finish under 6 hours and 30 minutes, the course's maximum time allowed. It was about that time that I thought I might be able to make this a personal record (PR). My previous PR was 5 hours and 45 minutes. As I neared mile 23, I started to become tearful again. I not only was going to finish, I was going to finish with my fastest time for sure.
I saw my beautiful spectators at mile 26. I was back to slow jog at that point, and waved as I went in for the last 0.2. I felt strong. I felt emotionally capable to take on whatever lied in front of me. I would be able to conquer whatever life was ready to throw at me. And I knew this was all true as I crossed the finish line at 5 hours and 6 minutes. No tears at the finish. I wasn't there to cry. I was there to prove to myself I was/am capable. I did that. I owned Chicago!
As I made it through the finishers shoot, the cold hit me. The race ends only 3 blocks in from Lake Michigan, and the coolness was a bitter, brisk, wind. I met up with the family and dressed back up in layers as quickly as possible. We took a few pictures, and back to the hotel we walked.
This race was a great race for me mentally, and emotionally. This race had great entertainment, and crowd support throughout. I almost felt it had more entertainment than the Rock and Roll marathon in Savannah. I thought the race had plenty of water stops, and each one was well manned with volunteers. Everything was marked really well, and the course had plenty to look at. Not to mention it was very flat, and fast. There were ample bathrooms, and the race was well run. I would recommend this race to anyone looking for a great, flat, fun race.
I want to take some time to thank my family, especially Jacob. At any point they could have convinced me not to race, or even got angry at my stubborness to keep training. They didn't. They trusted me enough to know my own body, and to do what I thought was best. Thank you. I would also like to thank my Amber girls. Your support means so much! I know I thought I was crazy at first, but as we all know crazy loves company. Thank you for understanding crazy isn't so bad! And then a final thank you to Get Fit Atlanta coaches. Seriously, without you I wouldn't have made it to half of the training runs. If it would be left to me to map out a course I wouldn't do it. Thank you for having the course figured out, and letting me lag behind for those 6 months while carrying Cade. I truly believe a marathon is never achieved alone. This one was no exception.
I achieved more than a marathon dream when I crossed the finish line. This race was a race to prove to myself I am still in control of my spiraling life. I still hold the key to my own accomplishments. I still am in control....of me. And when I crossed that line, I knew I was ready for anything. So bring it life....this marathon momma is ready!
Tuesday, October 9, 2012
The Whole Truth
I have been purposely absent from the blog lately. I am not a great liar, typing or in person. I also didn't want to hear everyone's opinion on this topic. Not that I don't value others opinions, I am still hocked up on Prednisone, which causes my patience to wear thin.
So let's go back two weeks to my blood doctor's. I was in for just a CBC to check my iron and platelet levels. My iron is steady, which means I won't have to do any more iron infusions for a while. But my platelets had dropped again from the previous week. So the doc ordered me back the next week for another CBC. He wanted me off Prednisone as fast as medically possible. I started weening off quickly.
--> At this point I sort of knew ITP was back. I was starting to feel more tired. My breast milk was pretty much non existent. Bruises were showing up on my body. The circles under my eyes were darkening. I know the signs. I didn't want to admit it out loud, but inside I knew my body. The withdrawal from the Predisone brought on hair loss (I can afford to loose a lot of hair. I have plenty), and migraines. My ADD went into overdrive, and I would find myself zoning out for minutes at a time.
Last week Thursday I went back in for my normal CBC. (On a side note I can't tell everyone how lucky I am to have a baby like Cade. He is so chill, and good when we are out and about. He has been to 11 doctor appointments with me, for me. He is only 6 weeks old. I am blessed.). Okay back to Thursday. I felt good that day. My nurse Kim wasn't there, so it was just Dr Saleh in his wing, and he came in to visit momentarily as we waited on the counts. He left the room, and I could hear him and the blood technician in the hallway.
When the door knob turned, and the doctor entered, his head was down.
Dr. Saleh "tsked" twice and then said "Well it isn't good."
My heart sank, and I felt a lump forming in my throat.
"You are way down. Remind me how much Prednisone we have you on."
"I take 20, one day, and zero the next"
"How do you feel when you are off of it"
"It doesn't matter. I will get through anything to get off this. Please don't put me back on it. I have been on it since Aug."
"Going back on isn't an option. It isn't working anymore. You have too many antibodies in your system"
"So..." I knew I shouldn't say it. But I couldn't stop the words from from so easily slipping through my lips "I was put on Prednisone for no reason." I said it vengeance. The hurt and anger could be heard my tone.
Dr. Saleh had turned his back to me and was washing his hands. As the vile words hit his ears he stopped all movement. I could hear him sigh. He turned his head slowly and with empathy in his face I saw his eyes move from Cade to me. He very carefully said "Amanda, you are alive because of Prednisone."
I knew I had crossed a barrier. As the words sunk in, I realized he knew a while ago that ITP was back. He saw the signs a long time ago. He had done everything he needed to. And in his medical mindset, he done his job. I had survived childbirth. I needed some time to take in what he was saying. I knew it had been bad. But I wouldn't let me my mind wrap around how bad it really was. I mean women don't die in childbirth, not women who are in as good as shape as me. Not women who have babies in the hospital surrounded by doctors. I had not really let my mind wrap around how serious it was. I guess the doctor felt that it was time I take full inventory of where I was, where I had been, and where I needed to be. "So what is the plan?"
Dr. Saleh snapped back into his show-no-more-emotion self. "I am going to order 4 rounds of chemo. We did Rituxian last time, right?"
"Yes, sir. It worked after 6 treatments."
"Good, then we will try that first. We will hope it will work, and you are not immune to it. I will deal with your insurance. Let's start this tomorrow."
"Oh, I can't. I know this sounds silly, but I am taking Cade up North for a week. Can I still make that trip?"
"Yes, okay, that will change you dosage of Prednisone. You will go back on it, and then we will take you off of it when you get back. When do you get back in town?"
We set out a plan. I will go in for another CBC on Monday the 15th. This is to make sure I am healthy enough to start chemo. Then I am scheduled for the next 4 Tuesdays for treatment.
I left the office with tears in my eyes. I know I should have expected it. I was told at the start of the pregnancy that ITP would come back. I was warned I would relapse. I would have been super woman if it hadn't come back. I guess I had told myself I was super woman.
But the truth is out now. Yes, I purposely didn't write this blog last week, as I knew people would freak out about the marathon. I will say yes, I did run the marathon (I will blog about that next), and I did survive. I will also just put it out there...neither of my doctors knew I was running the marathon this weekend. I had been approved to run by the OBGYN, I just left out how far I was running. And Dr. Saleh knew I was headed up North, just not exactly why. I know this could have back fired on me. But I asked Jacob and my family (and my bestee Shane) to just trust me. And I am thankful to them, that they did. I ran that race for cancer research. I essentially ran that race for me.
I am in MI and enjoying my time with the families, and friends. Cade, of course, is being such a good baby. He did great on the car ride up here. We have the rest of the week filled with family and friend activities! We will be busy while we are here!
So it is all out. The whole truth.
So let's go back two weeks to my blood doctor's. I was in for just a CBC to check my iron and platelet levels. My iron is steady, which means I won't have to do any more iron infusions for a while. But my platelets had dropped again from the previous week. So the doc ordered me back the next week for another CBC. He wanted me off Prednisone as fast as medically possible. I started weening off quickly.
--> At this point I sort of knew ITP was back. I was starting to feel more tired. My breast milk was pretty much non existent. Bruises were showing up on my body. The circles under my eyes were darkening. I know the signs. I didn't want to admit it out loud, but inside I knew my body. The withdrawal from the Predisone brought on hair loss (I can afford to loose a lot of hair. I have plenty), and migraines. My ADD went into overdrive, and I would find myself zoning out for minutes at a time.
Last week Thursday I went back in for my normal CBC. (On a side note I can't tell everyone how lucky I am to have a baby like Cade. He is so chill, and good when we are out and about. He has been to 11 doctor appointments with me, for me. He is only 6 weeks old. I am blessed.). Okay back to Thursday. I felt good that day. My nurse Kim wasn't there, so it was just Dr Saleh in his wing, and he came in to visit momentarily as we waited on the counts. He left the room, and I could hear him and the blood technician in the hallway.
When the door knob turned, and the doctor entered, his head was down.
Dr. Saleh "tsked" twice and then said "Well it isn't good."
My heart sank, and I felt a lump forming in my throat.
"You are way down. Remind me how much Prednisone we have you on."
"I take 20, one day, and zero the next"
"How do you feel when you are off of it"
"It doesn't matter. I will get through anything to get off this. Please don't put me back on it. I have been on it since Aug."
"Going back on isn't an option. It isn't working anymore. You have too many antibodies in your system"
"So..." I knew I shouldn't say it. But I couldn't stop the words from from so easily slipping through my lips "I was put on Prednisone for no reason." I said it vengeance. The hurt and anger could be heard my tone.
Dr. Saleh had turned his back to me and was washing his hands. As the vile words hit his ears he stopped all movement. I could hear him sigh. He turned his head slowly and with empathy in his face I saw his eyes move from Cade to me. He very carefully said "Amanda, you are alive because of Prednisone."
I knew I had crossed a barrier. As the words sunk in, I realized he knew a while ago that ITP was back. He saw the signs a long time ago. He had done everything he needed to. And in his medical mindset, he done his job. I had survived childbirth. I needed some time to take in what he was saying. I knew it had been bad. But I wouldn't let me my mind wrap around how bad it really was. I mean women don't die in childbirth, not women who are in as good as shape as me. Not women who have babies in the hospital surrounded by doctors. I had not really let my mind wrap around how serious it was. I guess the doctor felt that it was time I take full inventory of where I was, where I had been, and where I needed to be. "So what is the plan?"
Dr. Saleh snapped back into his show-no-more-emotion self. "I am going to order 4 rounds of chemo. We did Rituxian last time, right?"
"Yes, sir. It worked after 6 treatments."
"Good, then we will try that first. We will hope it will work, and you are not immune to it. I will deal with your insurance. Let's start this tomorrow."
"Oh, I can't. I know this sounds silly, but I am taking Cade up North for a week. Can I still make that trip?"
"Yes, okay, that will change you dosage of Prednisone. You will go back on it, and then we will take you off of it when you get back. When do you get back in town?"
We set out a plan. I will go in for another CBC on Monday the 15th. This is to make sure I am healthy enough to start chemo. Then I am scheduled for the next 4 Tuesdays for treatment.
I left the office with tears in my eyes. I know I should have expected it. I was told at the start of the pregnancy that ITP would come back. I was warned I would relapse. I would have been super woman if it hadn't come back. I guess I had told myself I was super woman.
But the truth is out now. Yes, I purposely didn't write this blog last week, as I knew people would freak out about the marathon. I will say yes, I did run the marathon (I will blog about that next), and I did survive. I will also just put it out there...neither of my doctors knew I was running the marathon this weekend. I had been approved to run by the OBGYN, I just left out how far I was running. And Dr. Saleh knew I was headed up North, just not exactly why. I know this could have back fired on me. But I asked Jacob and my family (and my bestee Shane) to just trust me. And I am thankful to them, that they did. I ran that race for cancer research. I essentially ran that race for me.
I am in MI and enjoying my time with the families, and friends. Cade, of course, is being such a good baby. He did great on the car ride up here. We have the rest of the week filled with family and friend activities! We will be busy while we are here!
So it is all out. The whole truth.
Monday, September 24, 2012
Anxiety Takes Over Me
I am not writing this for pity, as that is the last thing I want. I am writing this as a therapeutic method of working through my life. I guess I am writing this post for others to understand my ultimate HATE for Prednisone. I am also writing as it might explain some of my posts in the
past/future. My inability to stay focused, and my downer appearance can
be somewhat explained with the mental exhaustion from Prednisone. I
have so many thoughts, and things I want to blog about, but unsure how
to collect and organize everything.
I have complained about Prednisone before. Well, let's be honest, I have complained a lot! I hated this drug four years ago, and I swear the second time around I have more of the side effects, and they are more intense. Just to try and put this into perspective here is a general, easy to read, list of the side effects (from Wikipedia) I highlighted the ones that I am experiencing right now.
Now I knew this would happen. I fought with everything I had not to go back on this drug. Now most people (and animals) I know have been on Prednisone at some point. Most people take around 10mg for a few weeks. I take upwards of 100mg for months on end. I was promised this time around, smaller doses, 50mg, and maybe only 2 to 3 weeks on, and then a weaning off process. I am into month 2 on this hellish drug and even though I am currently weaning off, the process is going much slower than I want.
The amount of anxiety I have had this time around, is close to me wanting to check myself into a padded room. Fighting the anxiety, the depression, and the untrue thoughts is a mentally exhausting battle that I am struggling with each day.
Most people reading this would never know the battle that goes on in my head every day. I am a great actress, and am waiting for my actress paycheck, I guess it is lost in the mail. I am happy, bubbly, positive person when out in public. But at home, when it is just me, all day long, the thoughts become my "friends". I don't hear voices, it is always just thoughts. I am not unstable, I just have a mind that can't shut off, and is filled with untrue/unsubstantiated thoughts.
I honestly am more mentally aware of true vs. untrue thoughts than most with ITP who are placed on these steroids. Check out any of the ITP discussion forums, or support groups and you will see it is true. These people are pieces of work, and I think I can say that as I am one of them, and I understand where they are coming from. Most individuals placed in this mental battle just give into the negative thoughts. They watch their faces fill with water weight, give into the unabridged hunger, and hide inside due to the unending migraines.
I fight every day NOT to be one of those people. I fight mental battles in my head, against myself. When I find myself caught up in a back and forth conversation, with myself, I have to take control, and talk myself into what is true and real. What is happening in the right now? What do I know is true? What do the facts tell me? And then I have to let it go.
For example: While my sister was here, she said she thought she saw some smoke go past our master bedroom window. Immediately my mind goes to a fire outside the window. Then I visualize the side of the house in flames. I ask Jacob to go and look. He looks at me like I am nuts, and says to me "there is no smoke" For most people they would know there is no fire. But in my mind, I started to feel the heat from the fire. Then I could hear the fire. I walk to the window, there is no fire. I go back and sit down. I see smoke in the house. I check the basement. No fire. I sit back down. I start sweating from the impending fire. I turn on the fan, just to see more smoke in the house. I start to struggle to breath. My baby is going to die because of smoke inhalation. I will go to jail for not protecting Cade. My whole family is going to die. It will be my fault. Now I am short of breath because I am a bad mother. I go back to the window to check how bad the fire is. My mind is screaming THERE IS NO FIRE, and then my mind is screaming, THE FIRE IS IN THE GARAGE, YOU CAN'T SEE IT! This whole ordeal is really like 1-2 minutes of my life, but I am pretty sure the fire has been going on for hours. I then have to bring my mind to the fact that there is no fire. There is no smoke. Cade is fine. I am a good mother. I have to force myself to sit down, and not get up, no matter how much my mind screams at me to get out of the house. I bring my breathing back to normal. I keep telling myself there is no fire. It is the drugs. It is in my head.
This battle takes place in my mind. Pretty much all day long. I show few outward signs. Jacob is in tune with what this drug does, and can tell when my mind is not right. My breathing can be a clue, but I keep that under control most days.
Again, I am writing this post today as a therapeutic method. It is a way for me to try (yes, try) to process through my life, and collect my thoughts. I know this weighs heavy on many of your hearts, but stay strong, like me. :) I know many of you keep me and the family in your thoughts and prayers, and I appreciate that more than I can express through these typed words.
On a positive note: Cade is a good baby, and I am enjoying my days home with him. He turns 1 month today, and I am in complete shock. He has such a great personality, and I LOVE his facial features!
I have complained about Prednisone before. Well, let's be honest, I have complained a lot! I hated this drug four years ago, and I swear the second time around I have more of the side effects, and they are more intense. Just to try and put this into perspective here is a general, easy to read, list of the side effects (from Wikipedia) I highlighted the ones that I am experiencing right now.
Side-effects
Major
- Increased blood sugar for diabetics
- Difficulty controlling emotion
- Fluid Retention
- Difficulty in maintaining train of thought
- Weight gain
- Facial swelling
- Depression, mania, psychosis, or other psychiatric symptoms
- Unusual fatigue or weakness
- Mental confusion / indecisiveness
- Blurred vision
- Abdominal pain
- Peptic ulcer
- Infections
- Painful hips or shoulders
- Steroid-induced osteoporosis
- Stretch marks
- Osteonecrosis
- Long-term migraines
- Insomnia
- Severe joint pain
- Cataracts or glaucoma
- Anxiety
- Black stool
- Stomach pain or bloating
- Severe swelling
- Mouth sores or dry mouth
- Avascular necrosis
- Hepatic steatosis
Minor
- Nervousness
- Acne
- Rash
- Increased appetite
- Hyperactivity
- Frequent urination
- Diarrhea
- Removes intestinal flora
- Leg pain/cramps
- Sensitive teeth
Now I knew this would happen. I fought with everything I had not to go back on this drug. Now most people (and animals) I know have been on Prednisone at some point. Most people take around 10mg for a few weeks. I take upwards of 100mg for months on end. I was promised this time around, smaller doses, 50mg, and maybe only 2 to 3 weeks on, and then a weaning off process. I am into month 2 on this hellish drug and even though I am currently weaning off, the process is going much slower than I want.
The amount of anxiety I have had this time around, is close to me wanting to check myself into a padded room. Fighting the anxiety, the depression, and the untrue thoughts is a mentally exhausting battle that I am struggling with each day.
Most people reading this would never know the battle that goes on in my head every day. I am a great actress, and am waiting for my actress paycheck, I guess it is lost in the mail. I am happy, bubbly, positive person when out in public. But at home, when it is just me, all day long, the thoughts become my "friends". I don't hear voices, it is always just thoughts. I am not unstable, I just have a mind that can't shut off, and is filled with untrue/unsubstantiated thoughts.
I honestly am more mentally aware of true vs. untrue thoughts than most with ITP who are placed on these steroids. Check out any of the ITP discussion forums, or support groups and you will see it is true. These people are pieces of work, and I think I can say that as I am one of them, and I understand where they are coming from. Most individuals placed in this mental battle just give into the negative thoughts. They watch their faces fill with water weight, give into the unabridged hunger, and hide inside due to the unending migraines.
I fight every day NOT to be one of those people. I fight mental battles in my head, against myself. When I find myself caught up in a back and forth conversation, with myself, I have to take control, and talk myself into what is true and real. What is happening in the right now? What do I know is true? What do the facts tell me? And then I have to let it go.
For example: While my sister was here, she said she thought she saw some smoke go past our master bedroom window. Immediately my mind goes to a fire outside the window. Then I visualize the side of the house in flames. I ask Jacob to go and look. He looks at me like I am nuts, and says to me "there is no smoke" For most people they would know there is no fire. But in my mind, I started to feel the heat from the fire. Then I could hear the fire. I walk to the window, there is no fire. I go back and sit down. I see smoke in the house. I check the basement. No fire. I sit back down. I start sweating from the impending fire. I turn on the fan, just to see more smoke in the house. I start to struggle to breath. My baby is going to die because of smoke inhalation. I will go to jail for not protecting Cade. My whole family is going to die. It will be my fault. Now I am short of breath because I am a bad mother. I go back to the window to check how bad the fire is. My mind is screaming THERE IS NO FIRE, and then my mind is screaming, THE FIRE IS IN THE GARAGE, YOU CAN'T SEE IT! This whole ordeal is really like 1-2 minutes of my life, but I am pretty sure the fire has been going on for hours. I then have to bring my mind to the fact that there is no fire. There is no smoke. Cade is fine. I am a good mother. I have to force myself to sit down, and not get up, no matter how much my mind screams at me to get out of the house. I bring my breathing back to normal. I keep telling myself there is no fire. It is the drugs. It is in my head.
This battle takes place in my mind. Pretty much all day long. I show few outward signs. Jacob is in tune with what this drug does, and can tell when my mind is not right. My breathing can be a clue, but I keep that under control most days.
Again, I am writing this post today as a therapeutic method. It is a way for me to try (yes, try) to process through my life, and collect my thoughts. I know this weighs heavy on many of your hearts, but stay strong, like me. :) I know many of you keep me and the family in your thoughts and prayers, and I appreciate that more than I can express through these typed words.
On a positive note: Cade is a good baby, and I am enjoying my days home with him. He turns 1 month today, and I am in complete shock. He has such a great personality, and I LOVE his facial features!
Tuesday, September 18, 2012
A Pinterest Kind of Day
Yesterday I had a Pinterest inspired day. The day was cloudy, and rain was in the forecast. Over the weekend I had made a list of all the items I would need to create a few projects that I had found on Pinterest. My new goal for the rest of the time I am home, which is now only 6 more weeks, is to do what I can to make our lives easier for when I go back to work.
Cade and I have a pretty normal routine during the week. He is feeding/sleeping on a pretty consistant schedule, so I know I should get things done in the morning, when he sleeps the longest, and know in the afternoon he will fuss, and not want to be put down on his own. So I do things that I can do one handed in the afternoons.
First thing we did yesterday was go to Cade's three week pediatrician appointment. Our beautiful boy is growing, and is 9 lbs 5 oz now. He hasn't really grown anymore length wise, but his head is up an entire inch, which I guess is really good. He is in the 48th percentile, which is average. That is all we can ask for. We are watching some of his blood tests, as he showed signs of cystic fibrosis, but upon further investigation, he has no mutations, but might have anemia. That is sad to me, because I know it comes from me....but honestly if that is it, we can deal with anemia! He might even grow out of it still.
We got home from the doctors and I went to work making a blueberry/banana oatmeal bake. I figured I would be able to make this ahead of time, and then be able to heat it up during the week. Here is the recipe I found on Pintrest. I am not so great at this documenting as you go with these projects, and I almost always remembered to take a picture after the fact. But here is a picture of the bake already scooped up in my tupperware. I was able to get four 1 cup servings, at 200 calories each.
** Don't mind all of the other tupperware in the background, that is another Pinterest project in progress.... Also I had the bake this morning for breakfast was pretty impressed. I ate it almost 3 hours ago, and still feel full.
Cade and I had a "play date" with our friends Alison, and Henry, so we went and had lunch downtown Smyrna. Cade has had two play dates now, and he has slept through both of them. I guess that is to be expected at this age :)
We had to run two errands on our way home, and Cade got a little fussy towards the end. Of course the checkout lady at Office Depot was Ms. Chatty with the two people in front of me, so as Cade starts to wail in line, she just kept talking. I knew I was pushing the limits by stopping, but thought picking up printer paper at 2:30 in the afternoon should have been a quick in and out. I have learned to expect things to take a million times longer if I am pushing the envelope with his feeding schedule. We survived, the 10 minute wait in line....
I have been really good about cooking dinner, and thought this week I would try some Pinterest ideas. So for dinner I made Mini Chicken Pot Pies. Super easy, and I was able to do it one handed, as Cade refused to sit on his own without wailing at the top of his lungs. It look about 30 minutes total. We used the regular Grands biscuits, so the calorie count came out to 181 per pot pie. Jacob hates pot pies, but was willing to give it a try, and he enjoyed them. I made 8 total, and we had 2 left over. I am pretty sure they will heat up well enough as long as you do with within a day or so. Here is a picture after we had already eaten some of it.
After dinner Cade was hungry. I was watching the news and the weatherman announced that rain was on the way. Jacob quickly dressed to go out and get in his run as I finished feeding, so I could get out when I was done. Jacob got to the end of the driveway and the sky opened up, and it down poured. We just weren't fast enough. So I had some pent up energy and no way to let it out on the road.
When Cade decided to settle down enough and I was able to get started, and complete a few of my other projects I wanted to. I had "created" this first project from a few ideas I put together on Pinterest. I had found this to-do list, and liked the idea of not using so much paper, but couldn't find the room for a to do list like this. I loved the idea of a frame, and using Expo markers though. Then I found this organizer for our weekly menus. I used it for two weeks, and it was more than I needed. I didn't like that each week I had to print a paper, and there was no reason for me to list the ingredients. So then I found these labels, and I started to put everything together.... Here is my end project of our weekly calendar/menu
I have a little bit of a better picture of the end project at the end of the blog. So it is a plastic frame from Micheal's, and the label print outs under the frame. Then on top of the plastic I write what is for dinner, or what is going on for dinner. That way Jacob and I know if we are eating together, what we are eating (so either of us can do the cooking), if we are eating separate, and why. I put 4 strong magnets on the back, and now it has a place on the side of our refrigerator. I am hoping to keep this simple, and my thought is after I return to work, whoever makes it home first, knows what ingredients we have for dinner, and what to make. After getting all the supplies this project took 45 minutes from start to finish.
I still had a little bit of time before our last feeding, so I went ahead and made a customizable, tear off shopping list. I found the template here. Last week I had downloaded this list, and customized it for our family. Then we used it for a week to see if we liked it. I used it to make the shopping list, and Jacob was able to maneuver the grocery store, and get everything we needed. So we made a few last minute tweeks and then made 26 copies. I followed the directions exactly, and here was my ending product
Here is a picture of the side of our fridge.
So there you have it. A day of Pinterest. I am hoping to do a couple more projects this week. I have supplies to make some coasters, organize our tupperware drawer, and make a cutting board shelf. We have three more meals this week that will be Pinterest inspired. I have to admit I was a little weary of joining this Pinterest fad, but I am really using this as a practical website, and do things with what I am "pinning". I will continue the goal of creating a stress free life, for when we become a family of two working parents again.
Cade and I have a pretty normal routine during the week. He is feeding/sleeping on a pretty consistant schedule, so I know I should get things done in the morning, when he sleeps the longest, and know in the afternoon he will fuss, and not want to be put down on his own. So I do things that I can do one handed in the afternoons.
First thing we did yesterday was go to Cade's three week pediatrician appointment. Our beautiful boy is growing, and is 9 lbs 5 oz now. He hasn't really grown anymore length wise, but his head is up an entire inch, which I guess is really good. He is in the 48th percentile, which is average. That is all we can ask for. We are watching some of his blood tests, as he showed signs of cystic fibrosis, but upon further investigation, he has no mutations, but might have anemia. That is sad to me, because I know it comes from me....but honestly if that is it, we can deal with anemia! He might even grow out of it still.
We got home from the doctors and I went to work making a blueberry/banana oatmeal bake. I figured I would be able to make this ahead of time, and then be able to heat it up during the week. Here is the recipe I found on Pintrest. I am not so great at this documenting as you go with these projects, and I almost always remembered to take a picture after the fact. But here is a picture of the bake already scooped up in my tupperware. I was able to get four 1 cup servings, at 200 calories each.
** Don't mind all of the other tupperware in the background, that is another Pinterest project in progress.... Also I had the bake this morning for breakfast was pretty impressed. I ate it almost 3 hours ago, and still feel full.
Cade and I had a "play date" with our friends Alison, and Henry, so we went and had lunch downtown Smyrna. Cade has had two play dates now, and he has slept through both of them. I guess that is to be expected at this age :)
We had to run two errands on our way home, and Cade got a little fussy towards the end. Of course the checkout lady at Office Depot was Ms. Chatty with the two people in front of me, so as Cade starts to wail in line, she just kept talking. I knew I was pushing the limits by stopping, but thought picking up printer paper at 2:30 in the afternoon should have been a quick in and out. I have learned to expect things to take a million times longer if I am pushing the envelope with his feeding schedule. We survived, the 10 minute wait in line....
I have been really good about cooking dinner, and thought this week I would try some Pinterest ideas. So for dinner I made Mini Chicken Pot Pies. Super easy, and I was able to do it one handed, as Cade refused to sit on his own without wailing at the top of his lungs. It look about 30 minutes total. We used the regular Grands biscuits, so the calorie count came out to 181 per pot pie. Jacob hates pot pies, but was willing to give it a try, and he enjoyed them. I made 8 total, and we had 2 left over. I am pretty sure they will heat up well enough as long as you do with within a day or so. Here is a picture after we had already eaten some of it.
After dinner Cade was hungry. I was watching the news and the weatherman announced that rain was on the way. Jacob quickly dressed to go out and get in his run as I finished feeding, so I could get out when I was done. Jacob got to the end of the driveway and the sky opened up, and it down poured. We just weren't fast enough. So I had some pent up energy and no way to let it out on the road.
When Cade decided to settle down enough and I was able to get started, and complete a few of my other projects I wanted to. I had "created" this first project from a few ideas I put together on Pinterest. I had found this to-do list, and liked the idea of not using so much paper, but couldn't find the room for a to do list like this. I loved the idea of a frame, and using Expo markers though. Then I found this organizer for our weekly menus. I used it for two weeks, and it was more than I needed. I didn't like that each week I had to print a paper, and there was no reason for me to list the ingredients. So then I found these labels, and I started to put everything together.... Here is my end project of our weekly calendar/menu
I have a little bit of a better picture of the end project at the end of the blog. So it is a plastic frame from Micheal's, and the label print outs under the frame. Then on top of the plastic I write what is for dinner, or what is going on for dinner. That way Jacob and I know if we are eating together, what we are eating (so either of us can do the cooking), if we are eating separate, and why. I put 4 strong magnets on the back, and now it has a place on the side of our refrigerator. I am hoping to keep this simple, and my thought is after I return to work, whoever makes it home first, knows what ingredients we have for dinner, and what to make. After getting all the supplies this project took 45 minutes from start to finish.
I still had a little bit of time before our last feeding, so I went ahead and made a customizable, tear off shopping list. I found the template here. Last week I had downloaded this list, and customized it for our family. Then we used it for a week to see if we liked it. I used it to make the shopping list, and Jacob was able to maneuver the grocery store, and get everything we needed. So we made a few last minute tweeks and then made 26 copies. I followed the directions exactly, and here was my ending product
Here is a picture of the side of our fridge.
So there you have it. A day of Pinterest. I am hoping to do a couple more projects this week. I have supplies to make some coasters, organize our tupperware drawer, and make a cutting board shelf. We have three more meals this week that will be Pinterest inspired. I have to admit I was a little weary of joining this Pinterest fad, but I am really using this as a practical website, and do things with what I am "pinning". I will continue the goal of creating a stress free life, for when we become a family of two working parents again.
Sunday, September 16, 2012
Eating the rest of the week
Here is what we have for the past few days. These posts might not happen much longer. I keep myself pretty accountable, and I am tracking. It is almost more of a pain of me thinking about putting them up on here, just because of the time it takes. And let's be honest, with Cade, time is of the essence. I have other things I could always be doing. Like the many Pinterest projects I bought supplies for :) Anywho as promised, but not promising this will continue, here is the rest of the week.
Thurs, Sept. 13
Obviously a decent day. Good breakfast, lunch, and protein for dinner. I got in a run too, which did felt great! I have to drink more, of anything really, so I have been drinking things with a little bit of flavor. I am considering getting a lemon and putting it into my water. I also have a bunch of G2 in the house, which isn't too bad calorie wise, and it does hydrate me.
Fri, Sept. 14
Another good day. Jacob normally requests Taco Bell at least once a weekend. So I went ahead and got it out of the way on Friday. I still was way under, especially since I am to be eating any extra 500 calories. I was full, and felt good. Cade didn't really allow me to eat too much during the day, so it was easy not to eat mindlessly. I made decent choices considering it was "a night out".
Sat, Sept. 15
Running 14 miles obviously helps bring up how much you are allowed to eat :) I eat before I run, and then have "gu"s while I run, and then have breakfast when I get back! So it looks like I had a lot, which I guess I did. The rest of the day was spent doing things around the house, and Jacob helped me with my craving for a turkey, cheese, and jalapeno sandwich! Overall another good day.
Sun, Sept. 16
A teacher friend brought over dinner for us, and we had it for our "big meal" at lunch time. Then we had left overs for dinner. So good! Another day of just doing life around the house with a newborn.
Okay that didn't take as long as it did the other day, so I am getting faster, but like I said I do hold myself more accountable than even I thought. So I am not sure if these posts will continue. Until next time.....
Thurs, Sept. 13
|
Breakfast
|
Calories
|
Carbs
|
Fat
|
Protein
|
|
|
40
|
6
|
0
|
4
|
||
|
110
|
23
|
1
|
2
|
||
|
30
|
7
|
0
|
0
|
||
|
|
180
|
36
|
1
|
6
|
|
|
Lunch
|
|
|
|
|
|
|
100
|
22
|
1
|
6
|
||
|
8
|
0
|
1
|
0
|
||
|
45
|
2
|
1
|
9
|
||
|
62
|
16
|
0
|
1
|
||
|
|
215
|
40
|
3
|
16
|
|
|
Dinner
|
|
|
|
|
|
|
340
|
46
|
16
|
2
|
||
|
120
|
23
|
2
|
4
|
||
|
60
|
2
|
5
|
3
|
||
|
430
|
0
|
35
|
27
|
||
|
|
950
|
71
|
58
|
36
|
|
|
Snacks
|
|
|
|
|
|
|
55
|
22
|
0
|
0
|
||
|
95
|
4
|
8
|
4
|
||
|
90
|
17
|
2
|
1
|
||
|
10
|
0
|
0
|
0
|
||
|
110
|
23
|
1
|
2
|
||
|
|
360
|
66
|
11
|
7
|
|
|
|
|
||||
|
Totals
|
1,705
|
213
|
73
|
65
|
|
|
Your
Daily Goal
|
1,847
|
253
|
61
|
69
|
|
|
Remaining
|
142
|
40
|
-12
|
4
|
|
|
|
Calories
|
Carbs
|
Fat
|
Protein
|
|
|
*You've
earned 487 extra calories from running 4 miles
|
|||||
Obviously a decent day. Good breakfast, lunch, and protein for dinner. I got in a run too, which did felt great! I have to drink more, of anything really, so I have been drinking things with a little bit of flavor. I am considering getting a lemon and putting it into my water. I also have a bunch of G2 in the house, which isn't too bad calorie wise, and it does hydrate me.
Fri, Sept. 14
|
Breakfast
|
Calories
|
Carbs
|
Fat
|
Protein
|
|
60
|
2
|
0
|
12
|
|
|
80
|
1
|
5
|
8
|
|
|
30
|
7
|
0
|
0
|
|
|
|
170
|
10
|
5
|
20
|
|
Lunch
|
|
|
|
|
|
62
|
16
|
0
|
1
|
|
|
40
|
11
|
0
|
0
|
|
|
20
|
0
|
2
|
1
|
|
|
7
|
1
|
0
|
1
|
|
|
|
129
|
28
|
2
|
3
|
|
Dinner
|
|
|
|
|
|
430
|
42
|
25
|
12
|
|
|
300
|
36
|
7
|
22
|
|
|
140
|
19
|
7
|
1
|
|
|
|
870
|
97
|
39
|
35
|
|
Snacks
|
|
|
|
|
|
250
|
8
|
22
|
9
|
|
|
|
250
|
8
|
22
|
9
|
|
|
|
|||
|
Totals
|
1,419
|
143
|
68
|
67
|
|
Your
Daily Goal
|
1,360
|
187
|
45
|
51
|
|
Remaining
|
-59
|
44
|
-23
|
-16
|
|
|
Calories
|
Carbs
|
Fat
|
Protein
|
Another good day. Jacob normally requests Taco Bell at least once a weekend. So I went ahead and got it out of the way on Friday. I still was way under, especially since I am to be eating any extra 500 calories. I was full, and felt good. Cade didn't really allow me to eat too much during the day, so it was easy not to eat mindlessly. I made decent choices considering it was "a night out".
Sat, Sept. 15
|
Breakfast
|
Calories
|
Carbs
|
Fat
|
Protein
|
|
100
|
20
|
1
|
4
|
|
|
95
|
8
|
6
|
4
|
|
|
300
|
75
|
0
|
0
|
|
|
100
|
20
|
1
|
4
|
|
|
70
|
0
|
8
|
0
|
|
|
80
|
1
|
5
|
8
|
|
|
140
|
0
|
9
|
12
|
|
|
75
|
18
|
0
|
0
|
|
|
0
|
0
|
0
|
0
|
|
|
|
960
|
142
|
30
|
32
|
|
Lunch
|
|
|
|
|
|
210
|
41
|
4
|
8
|
|
|
100
|
26
|
0
|
0
|
|
|
|
310
|
67
|
4
|
8
|
|
Dinner
|
|
|
|
|
|
700
|
88
|
24
|
40
|
|
|
140
|
19
|
7
|
1
|
|
|
|
840
|
107
|
31
|
41
|
|
Snacks
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|||
|
Totals
|
2,110
|
316
|
65
|
81
|
|
Your
Daily Goal
|
3,020
|
415
|
99
|
113
|
|
Remaining
|
910
|
99
|
34
|
32
|
|
|
Calories
|
Carbs
|
Fat
|
Protein
|
|
*You've earned 1660 extra calories from running 14
miles
|
||||
Running 14 miles obviously helps bring up how much you are allowed to eat :) I eat before I run, and then have "gu"s while I run, and then have breakfast when I get back! So it looks like I had a lot, which I guess I did. The rest of the day was spent doing things around the house, and Jacob helped me with my craving for a turkey, cheese, and jalapeno sandwich! Overall another good day.
Sun, Sept. 16
|
Breakfast
|
Calories
|
Carbs
|
Fat
|
Protein
|
|
110
|
23
|
1
|
2
|
|
|
40
|
6
|
0
|
4
|
|
|
75
|
18
|
0
|
0
|
|
|
|
225
|
47
|
1
|
6
|
|
Lunch
|
|
|
|
|
|
180
|
36
|
1
|
6
|
|
|
308
|
31
|
15
|
12
|
|
|
45
|
3
|
3
|
2
|
|
|
25
|
0
|
0
|
0
|
|
|
|
558
|
70
|
19
|
20
|
|
Dinner
|
|
|
|
|
|
140
|
19
|
7
|
1
|
|
|
90
|
6
|
7
|
3
|
|
|
25
|
3
|
2
|
0
|
|
|
|
255
|
28
|
16
|
4
|
|
Snacks
|
|
|
|
|
|
70
|
15
|
0
|
2
|
|
|
|
70
|
15
|
0
|
2
|
|
|
|
|||
|
Totals
|
1,108
|
160
|
36
|
32
|
|
Your
Daily Goal
|
1,360
|
187
|
45
|
51
|
|
Remaining
|
252
|
27
|
9
|
19
|
|
|
Calories
|
Carbs
|
Fat
|
Protein
|
A teacher friend brought over dinner for us, and we had it for our "big meal" at lunch time. Then we had left overs for dinner. So good! Another day of just doing life around the house with a newborn.
Okay that didn't take as long as it did the other day, so I am getting faster, but like I said I do hold myself more accountable than even I thought. So I am not sure if these posts will continue. Until next time.....
Subscribe to:
Posts (Atom)