Monday, July 23, 2012

I don't like to talk about it....ITP

I don't talk a lot about it.  ITP that is.

I don't like that I have something wrong with me. I have this "mental problem" about myself.  I am hard on myself.  I hold myself to high expectations.  When I was diagnosed, I felt that I had been labeled with a weakness.  I don't want people's pitty.  I don't want others to think I am not as capable as anyone else because of three letters.

Because of what I call "my personal mental illness" I don't talk a lot about ITP.  When I do it is mostly facts.  If I was being honest right now I downplay it.  The less people know, the less they will think I am different, or think I need to be treated differently, or worst of all feel bad for me. 

Not until recently have I really shared more details with a few people about my journey with ITP.  I am proud of myself, and how far I have come.  I beat ITP once.  Then smacked it to the ground by becoming a triathlete, half and full marathoner.

To beat ITP I had to do six, eight hour sessions of chemotherapy.  You are right.  ITP is not a cancer, it is not a leukemia.  But because of research and clinical studies doctors have found that the same treatments that work for cancers and leukemia, can help those of us with this idiopathic blood disorder.  There is not a whole bunch of doctors putting a whole lot of time and effort into studying ITP.  Not that we are not important, we are just fewer in numbers.

While attending chemo I met others who were getting treatments for different cancers.  Each of them has an unique and amazing story.  I was lucky enough to be placed in an arena that allowed my eyes to be opened, and my heart changed by the journey of cancer.  Because of it, my mom and I completed the Breast Cancer 3-Day, 60 mile walk a month before I was claimed in remission. 

Cancer research is the closest thing I have to research for ITP right now.  They do not have a million walks, or runs, or bikes, for ITP research yet.  The best bet I have in finding new and improved treatments is through cancer research.

So when I was approached with the possibility of running a charity number through the Chicago Marathon, I was honored.  I not only get to do what I love, run, but I get to raise awareness for what the money goes towards when one donates.  If you have already donated, you are helping cancer research move towards a cure.  The word cure doesn't exist for for ITP yet, but I have hope the closer we get to a cancer cure, the closer ITP will be to a cure also.

I have pledged to raise $1000 for DeterminNation, which funds cancer research.  I will then proudly run the Chicago Marathon, on Oct. 7, in a DeterminNation shirt, with a huge smile on my face.  I am not to my goal yet, and with my high expectations for myself, to say I am not disappointed, would be a lie.  Cancer affects every one.  If you are lucky enough to not have experienced this in your own family, I can't tell you how important it is to count your blessings.  Actual cancer has affected my family on my mom's, and dad's side.  I have lost grandparents to cancer, I have aunts and uncles in remission, and I am not the only one still fighting to this day.

I face the reality of another round of chemo after Pat makes an appearance.  This is scary.  But I have faith in the doctors and research that has taken place before this time, that I will once again beat ITP. 

I am not one to beg for money, but instead of sadness or pity I ask that you take this chance to help find a cure, for cancer...for me.  If you would like to donate please visit my page by clicking HERE 

If you have already donated I can't thank you enough.  Know that you have done an amazing thing to help further cancer research.

If you would like to know more about ITP here are a couple of websites that I think do a decent job on informing the public.

PDSA
Wikipedia

Friday, July 20, 2012

One Year Ago

One year ago Jacob and I had a perfect plan in place.  Jacob was going to be deployed to Quatar for a year, we would use the money to fix some water damage, and get a new back porch.  The rest would be added to our already decent size nest egg for future endeavors.  We had realligned our lives so I could live alone for a year.  We had all the papers signed, I had my new military ID, and we were ready.  Jacob had just graduated a few weeks before, and when he got back from deployment we were going to work on getting him a job in IT.  Everything was in place. 

Jacob was in North Carolina training for his deployment.  One year ago today at 2:30 a.m. I received the call that threw our plan out the window, and we were never to go down the path we thought we were destine to.  Here is the recap of a year ago. 

Jacob and I are not ones to think back and regret, or over think things.  So here we are a year later.  We are in a totally different place, mentally, physically, financially, than we ever imagined. 

Jacob has made a complete recovery from a serious injury, physically and mentally.  He has been cleared through the first round to be employed by the FBI.  He works for the Atlanta Police Department ( I mean who saw that one coming??)  We are pregnant with our first child.  Had he not been injured he would have one month left on his deployment, and I can pretty much guarantee none of the above would have happened. 

Had I known what an early morning phone call would change, I may have prepared myself a little better. 

Thursday, July 19, 2012

I know better

Monday and yesterday I went up to my school to work in my classroom.  Monday, my goal was start with Jacob there, and when he left for work I would stay and start organizing things.  My classroom is on the second floor, and the air conditioning has worked maybe a total of 12 days since we opened the building 3 years ago.  And during the summer months, the air is NEVER working.  Jacob and I worked at moving the heavy stuff, and within 5 minutes we were both covered in sweat.  After 40 minutes, all the things I needed Jacob for were done, and I wasn't ready to spend the day in a swealting room, so I left with him. 

I made a plan for Wednesday and I trekked back in to work.  I was prepared with a box fan, wore shorts and tank tops, and had 3 bottles of water.  I had a list of the items I wanted to get done.  I wanted to empty out my file cabinet (here is a little secret I have about packing up for the summer.  We are told we can't have anything on bookcases, moveable shelves, or desks.  But there is never anywhere to put these things.  So I always stuff my file cabinet, with all the stuff on top of my desk, and two book cases.  I mean the floor people have moving machines.).  Anywho, so the file cabinet had to be emptied and organized, same with my desk drawers, and I wanted to set up my smart board. 

Well I did all that and a whole lot more.  I went slow, but I pretty much pulled everything I would need to start the year out of the cupboards, and got my library set up, the group work area, the art area, my teacher desk area, and threw out a whole bunch of stuff we all know I will never use.  Unfortunately to get a lot of these things done I had to do a lot of lifting books/binders and carrying across the room.  I didn't do anything heavy, but that meant I had to carry less books at once, which meant more trips across the room.  I had the fan going, but I was still a sweaty, dusty mess.  I drank what I wanted, but I know I should have drank more. 

By 2:30 I was actually exhausted.  I was very tired.  But overall I was super happy with my progress.  I drove home, ate some dinner, and feel asleep while sitting up.  When I woke up from my "nap" I knew the feeling I had.  My limbs were really heavy, my head was super groggy, I couldn't focus, and it took a lot for me to keep my eyes open. 

I used to live this way, on a regular basis.  When something is wrong with you blood, your immune system is compromised, which, in my case, creates this sense of being exhausted.  I can sleep all night long, then take a 5-6 hour nap, another 2 hour nap a few hours later, and still go to bed at regular time and sleep a whole night.  My friend Shane and I used to wonder if he just let me sleep how long I would sleep.  We never tried it, but I know I can easily sleep for over 16 hours. 

I know my platelets are low.  I could have told you they are, even if I didn't have the blood work to show it.  I know this exhausted feeling.  It is a different kind of feeling.  To top it all off, I am carrying Pat.  With pregnancy comes exhaustion. 

So last night when Jacob came home, he knew something wasn't right.  I was slurring words, not talking, not mentally present.  Just super tired.  We made sure today I didn't have any reason to leave the house, and I was to stay home and rest as much as possible.  So we go to bed, and the only thing on the calendar was our morning run.  But I guess I had pregnancy insomnia or something, because I stayed up almost all night not being able to rest my mind.  I was exhausted, but just couldn't find sleep.  I have never had this kind of trouble.  When I finally got out of bed at 4:30 I woke Jacob up and told him there was no way I was running.  I got up and ate some breakfast. 

It is still hard to explain.  I move around in a fog when I am tired like that.  I finally feel asleep watching the morning news somewhere around 6 am.  I have been sleeping on and off all day.  I know I over did it yesterday.  I know better than to act like my body is as normal as it was last year at this time.  But I act like I am invinciable, until I am left so tired I can't get myself out of bed for an entire day.

So because I do know better, I am doing nothing today.  I will probably take a few more naps before I fall asleep tonight.  I am blessed that I haven't felt this way until now.  I don't take that for granted.  I will need to find a balance of ITP, pregnancy, and going to work everyday, because I do know what will happen if I don't.....

Saturday, July 14, 2012

A fear resolved....

Jacob and I braved another baby class today. 

We had to start out our Baby Essentials class with introductions. We had to announce our names, due date, gender of the baby, what experience we had with children, what we wanted to learn in class, and a fear we had.  Somehow Jacob and I lucked out and were at the end of the introductions. Yes, we were front and center, so we knew we would be going first or last.  A lot of the fears others had were about labor itself, the guys were afraid of possibly hurting the baby, and a few people were worried about the crying of the baby.  Then it was our turn. 

"I am Amanda, and this is my husband Jacob.  We are due Aug. 27.  We are having a surprise and call the baby Pat" (every class so far has loved that line, and laughter ensues).  "I have experience with elementary school aged children, and did babysit, but that has been quite a few years.  I am open to learning anything that will help me not call my mom as much as she thinks I am going to call her.  And my fear" (as I have said I am not too much of a worrier, but I think everyone has something they are afraid of) " It comes from this pregnancy dream I had during month 3" (if you have never been pregnant it is common that you dream very vividly, and for me who has never really remembered dreaming ever, this has been a HUGE, and unwanted adjustment) " I was holding the baby in the cradle position and I guess I wasn't supporting the head enough, and the baby's head slipped off the cradle of my elbow, and apparently the neck broke.  I am assuming the baby died, and the dream scared me a bit"

Silence in the room.  I laugh nervously, because that is what I do when I realize I am in an awkward situation.  There was a class clown in the class, who broke the silence, and the nurse/instructor was able to reassure me that we would go over handling, passing, and holding the newborn.  Jacob finished up his introduction and first thing we did was pick up our "babies" and learn how to hold and pass the baby, while supporting the neck. 

I felt that this class was beneficial for both of us.  Poor Jacob is on a huge learning curve, as he is the youngest of the close cousins, the youngest sibling, and didn't have anything to do with little kids while he was growing up.  Jacob officially passed his first "newborn", changed his first diaper, gave his first sponge bath, and swaddled his first baby.  He really worked hard, and I think he will do great with Pat.   I was happy to learn that most things like, diaper changing, bathing, feeding, and burping are almost the same as they were when I took my babysitting course back in the 90's.  I did learn a lot more about breast feeding, SIDS, properly passing the baby, swaddling, and crib safety.  

 I know both of us feel a bit better after today's class.   We had a pretty good idea how to get through the hospital stay, but then what?  The nurses will wheel me out of the car, and say "Good luck".  That next step is what scared us both a bit.  I can carry this baby, I can push this baby out, but then.....

Pat is kicking around as I write this, so I feel like he/she is saying take it one step at a time, and we will make it through.  Sounds like great advice Pat. 

Friday, July 13, 2012

Overwhelmed???

I was back at school Mon-Wed this week.  I can't believe it.  Now, I had meetings Mon and Tuesday, and then I helped with some interviews on Wednesday, so I had reasons, but wow was it hard to just drag myself to work, and technically I didn't have to be there until 9 each morning, that is almost 2.5 hours later than the school year.  I guess it is my way of slowly getting back into a school schedule. 

Then on top of the idea of getting back into school, it is getting to be pressure time on getting things done for Pat.  I have said before I know NOTHING when it comes to baby stuff.  I am on a huge learning curve.  I work from lists, and right now we are working on the MUST HAVE DONE TO TAKE BABY HOME, and the MUST HAVE DONE BEFORE I GO BACK TO SCHOOL. 

We knocked a WHOLE LOT off our lists when mom and Duane were here.  But we still have a few big ticket items:

Pre-register for the hospital (suggested around month 6...whoops) I am working on it. Should be done in the next day or so

Fill out/fax in Maternity Leave paperwork.  I have them all collected, just need to fill in the blanks, and I technically have until 30 days before I want to start taking leave to get it turned in.  But 30 day mark is only 15 days away.....

Research/interview/decide on a Pediatrician.  I have researched....just haven't done a whole lot on the interviewing front.  Then on top of that we have to find out if the doctor we choose goes to Northside (where Pat will be born)  and if not we have to find a pediatrician that will come to Northside.  This is a large on taking, but I am doing a little at a time. 

Take hospital tour .  We are doing that tomorrow. So as much as I want to check it off, I can't quite yet.

Complete Baby Essential class.  Also will be done tomorrow. 

Purchase a baby monitor.  We have one picked out, but this was one of the things I gave to Jacob.  We might be able to do this over the weekend, but with his crazy work schedule we don't have a lot of regular business hours together.  But we have a little bit of time, so I am not too freaked out about this yet.

Purchase a second car seat base.  This just needs to get done.  Not sure why I haven't done it yet.  

Find a long term sub.  Yes....I still do not have a long term sub.  I know for most jobs you just fill out paper work and take maternity leave.  Not so for a teacher.  We have to find someone willing to take on our class for our leave, ask them to take on all of our requirements (for the same amount of sub pay that they get for a daily gig) and then we have to feed them all of the lessons they are to teach.  All while trying to give up all control to almost a complete stranger, and trust my kids/test scores to someone else.  I have to admit this is overwhelming for me.  I was hoping to have had a few meetings with my sub by this point, and have a lot of the lesson plans figured out.  However, no one is willing to sub long term.... My principal has said he will try to help, but he is trying to still fill in teacher positions at school, so my issue to low on his list to do.  I am trying to have a positive outlook, and know that there is little more I can do. 

Find a Childcare facility.  This item has been a hard one.  I started touring locations the first week in June.  I have been on top of this one.  But our first two picks have a year long waiting list.  We need something starting in November....not next year June.  So we have had to keep looking. And looking.  And looking.  We may have found the interim place.  Now just to fill out paper work, get on waiting lists, and write a whole bunch of checks just to hold our place.  I really had no idea how much stress this one item would bring me.  I will be happy when we have made a final decision.  

Pack the "labor" and "postpartum" bags.  We have the lists of the items that need to go in these bags, but we need to collect these items all in one place.  This is just something I don't want to have to worry about while starting school. 

Well those are the items that are left.  We have small things around the house like power wash the front porch, clean the fans, organize the basement, and detail my car.  But in the grand scheme of things, if these things didn't get done Pat will be none the wiser. 

So overwhelmed?....I can't say I am quite yet.  I still have a good 2 weeks before I HAVE to report to school, so some of these things shouldn't be too much of a problem.  But hey talk to me in a month...and ask me if I am overwhelmed?  The answer might be a bit different.  


Sunday, July 8, 2012

Labor = Marathon

It is becoming more real.  Pat will be here within the next 50 days.  50....five...zero... and that is if I go full term, which none of my doctors think I will. 

The last week has us sitting pretty good.  We worked our rear ends off, and really if Pat arrived tonight we would be okay.  But is there more on the list?  Of course. 

Today marks 6 years since Jacob and I wed in the church.  This is the anniversary we celebrate.  To be completely honest I completely forgot about the anniversary, with everything else we had going on.  If you know Jacob and I we really do little to celebrate anything, so me forgetting wasn't the end of the world.  I was reminded of the date on Friday.  So after Jacob and I reassured each other that we really, truly, for realsies didn't do anything for the anniversary, we decided there was no reason to stress about it now.  This weekend marked something else too.  It is our first weekend that it has been just us, and we have been together since I went on summer break.  Due to trips up North, the Army (for three weekends) and my parents visiting we haven't had a single weekend together this summer.  So it was something nice to look forward to. 

Yesterday was spent in Childbirth class from 9-5.  We actually learned a lot more than we thought we would.  It was a lot to take in, as we discussed everything from the baby growing, to pre labor, labor (and everything that includes), after labor, and then just a bit about post postpartum.  Of course most of the day was spent on pre-labor, and labor itself.  I did learn a lot about exactly what is taking place during the labor process, and then of course we learned how to survive labor.  Jacob and I did have a hard time keeping straight faces as the instructor showed us videos of women/men using the techniques we were being taught.  Then of course when the instructor took the "toys" and all of the couples got to try out the techniques ourselves, we let out some giggles.  But I do know what we learned will come in handy.  When the question "Who is going to be using some kind of medicine for pain management" was asked, and I was the only one NOT raising her hand.  I felt a little awkward, but didn't go into details.  If the black and blue marks on my arm, from needle pricks, didn't clue everyone in that I am a little different then they don't need to know. 

I feel ready for labor, which scares me a little.  I feel like I should be scared of that part.  But to me I am a competitive athlete.  As I have said before I do everything to 100% and labor isn't going to be any different.  Is it going to hurt?  Yes.  But here is how I am thinking about this part:  It will be like a marathon, but might be as long as a full Ironman. 

When I ran my full marathon, we started out nice and strong, and felt great.  That is the first part of labor. Contractions come, water breaks, but I can still talk, and move around easily.  This is the biggest/longest part of labor.  Then when we get to contractions around 5 minutes apart, the pain will start to get stronger.  That is about mile 13.5.  At that point, you are over half way, but a long way from the end.  The pain gets more intense, and mentally it starts wearing on you.  You are still "running" but your legs are heavier, and it is getting harder to keep up the pace.  Then it is the shortest but the most painful part of labor.  For me this was around mile 21 -23.  These few miles were the most painful.  My hips were killing, my legs felt like they couldn't move, mentally I wanted to shut down.  But it only lasted a few miles.  A short amount of time in the grand scheme of a marathon.  This is the hardest but shortest part of labor.  My baby doc told me when I get to the point I think that I can't do it for another second, that is the time it is time to push.  Or the last part of labor.  The pushing.  This is also a short amount of time, but it has a huge prize at the end.  When you hit mile 23 in a marathon, you realize you can make it.  It is only 3 more miles, and you push it through to the end.  And at the end there is a huge prize....baby Pat!

So going to this class didn't freak me out.  It just helped me get my mind in the right place.  I know I can do it. 

Now just to get the everything else in perfect order.....


Friday, July 6, 2012

We've been busy

Busy can be an understatement.  My mom and Duane arrived last Thursday evening, and the work began right away.  They had driven down in Duane's truck, which was packed end to end.  All of Pat's gifts from Michigan had to unpacked, Duane had brought a variety of tools, mom had her sewing machine, and then of course the normal stuff for when you travel.  We took everything out of the truck and it went straight into the basement, where Pat's pile had grown almost out of control.

Jacob is working 11a-8p right now, so during the weekdays we knew we would have to use our time wisely.  We set out a plan right away.  I was up around 6 each morning.  I got in my walk/run.  We all kind of took our time eating breakfast, waking up, and getting ready, but by 9 everyone had their to do list.  Jacob and Duane worked together until 11, when he had to go to work.  For the weekend, we knew we only had Jacob for a full two days, and we worked really hard.  We worked, only taking a break for lunch, until around 8 at night.  We would end the day to make dinner and eat when Jacob got home.  During dinner we would get the next days plan laid out, then go to bed around 11.  Only to wake up and do it all again the next day. 

To really understand all that was accomplished I guess breaking it down day by day is best.

Friday, June 29:  While Jacob was home we mapped out the nursery, and made a list of items we needed to get started.  This took a while, as it is my fault the room hadn't been painted yet.  I knew I was in LOVE with the orange we picked out.  But Jacob didn't want a room all orange.  So we had agreed to do two colors...but I couldn't decide on a second color.  And that was pretty accurate up until we left for Home Depot.  Our first trip to Home Depot was quite lengthy, but was very productive.  Mom and I painted the first coat on the new cat box.  Duane went to town on painting, and finished the two-toned wall before Jacob got home that night.



Saturday, June 30:  We did a bit of divide and conqueror since Jacob was home all day.  Us girls went and sorted through Pat's items, and started washing anything that would touch Pat's skin.  The boys went for the big haul at Home Depot.  My Atlanta baby shower was in the afternoon, and it was a ton of fun.  Mom and I spent most of the afternoon there, and the boys went to town on the nursery.  When we got back, with a whole lot more for Pat, the trim was up, and the closet had been filled with shelves, and rods.  We put the second coat on the cat box. 



Beth, and Sara did an amazing job with my shower!

Sunday, July 1:  This was the BIG day for the nursery.  The trim was painted first thing in the morning, and we took up all the plastic.  The boys went to Home Depot again, while mom and I brought up all of Pat's items, and started sorting.  The closet was finished, every item of Pat's was unpacked, washed, and the screen door went up.  The boys brought up the dresser/changing table, and the crib.  Since the big furniture was already put together, all that was left was organizing.  During this time the boys were able to work on the basement, in the laundry room and the man cave.







Monday, July 2:  This day left Duane and Jacob to start right away working on the basement, until Jacob had to go to work.  Mom and I went on a shopping spree.  We had a list of what Pat still needed, and went off to spend the gift cards.  We went to the Container Store, Anna's Linens, Babies R Us, and two separate Targets.  Don't get me started on Target, and their return/buying off your registry policies.  Hence, the two separate Targets.  I had a mini melt down at Target #1, and I was not impressed with the little lady who I think was no older than 21 talking down to me.  When we got back home the basement was complete.  Duane then custom made a bookcase for Pat's room.  We went to town putting the finishing touches on the organization (or nesting as Duane called it) in the nursery.  When Jacob got home, the nursery was almost complete.




Tuesday, July 3:  We had a lot of crazy things to do.  Annabell, my parent's dog, had hurt her back paw/nail so we made an early visit to the vet.  Then I took mom and Duane to the blood doctor with me, as we had a few other errands to run that day.  At the doctors my platelets did drop to 47,000.  Because I am lower than 50,000 we will have to do steroids.  Dr. Saleh has a plan.  I will go back the first week of Aug and we will create a "cocktail" of steroids that will shoot my platelets up.  I am not sure what the goal is yet, but I am sure I will become more versed in this as we go.  The goal is to find a "cocktail" that will work, and that will go in my medical files.  When I go into labor I will be given the cocktail, to get my platelets high enough to get through labor.  I am okay with this plan.  I am having a lot of signs of being out of remission, but it is what it is.  After the docs we dropped Duane off at this random stamp place.  Mom and I went to the Congress Center to pick up my race number.  We picked Duane back up on our way through town.  We spent the rest of the afternoon doing just odd jobs.  But the big thing was, the nursery was officially done!!  We got the new cat box up the bedroom, and started to figure out the new layout for the master bedroom. 
The screen door to keep the animals out

Right when you walk into the nursery

The bookcase

The crib

Dresser/changing table

The closet

The cat box is somewhere in this picture

Wednesday July 4:  Jacob had to be on police detail at 4 am, so he was up and out of the house.  Mom, Duane, and I got ready, and left for the race about 6:30.  I have to admit I was super excited to be racing again.  My last race was the Princess half in Feb.  So it felt great to have a number on.  The excitement stayed through the race.  I met up with my friend Lauren, and we stuck it out together.  It was the hot, but the race was well organized, and they had factored in the heat.  I would love to be lucky enough to run the Peachtree Road Race again next year.  Mom and Duane were at the end, along with my friend Sara!  When we got home, we decided it was a holiday and we would take it easy.  Everyone caught up on some sleep, emails, relaxing, and watching crazy videos.  We did go Centennial Olympic Park for the fireworks.  We met the Burdens down there, and had our annual get together.





Thursday, July 5th: Our last day of divide and conqueror.  Mom and I went off to tour The Goddard School, another option for Pat's childcare.  The boys had taken down the side towers in our master bedroom, and moved the bed.  We drove back to pick up Duane after Jacob went to work.  We went out to Walmart, Target, and Home Depot.  The afternoon was spent building a stand for the tv in the bedroom, mom sewed some new curtains, and Duane completed the guest/Pat's bathroom.  The bathroom had been torn apart by one of our first foster dogs, and we had never gotten around to fixing it.  But it is done now.  When Jacob got home we were ready to sit down and do a little relaxing.

Before with the backboard/towers

And after....so much more room
That brings us to today.  This morning mom and Duane were on the road at 6:30.  It is always sad for me when mom and Duane leave.  We are so blessed to have them in our lives, and lucky enough they actually enjoy driving 14 hours for a work vacation.  Jacob is gone at work, and now the house is way too quiet.  It will take a little getting used to, but with only three weeks of my summer break left, I have a feeling I will be able to fill the time, and then feel like I didn't have enough time.  We can not thank Duane and mom enough.  The nursery is ready for Pat.  The rest of our house is in order to make my life easier as a new mom.  It was a super busy few days, but we packed what most people do in 9 months in 7 days :) 

Oh and did I mention I am 8 months pregnant? 

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For more pics of the shower

For more pics of the nursery

For more pics of the 4th of July