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rollercoaster of emotions

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13 years 8 months ago #6614 by sedteach98
rollercoaster of emotions was created by sedteach98
I have had ITP since October of 2009, but officially I was diagnosed february of 2010. This was all happening while being pregnant with my second child. Because of the ITP, I developed HELLP syndrome at 31 weeks(with platelets at 10,000). My son was born 9 weeks early as a result. He is doing well.

Throughout this process I have experienced a whirlwind of emotions...

I was happy that my platelets rebounded on 80 mg. of prednisone, but disappointed when they immediately dropped when I started tapering. My first IVIG was moderately successful, bringing my platelets to 80,000. But that was short lived. My second IVIG only got my platelets to 40,000. In the hospital with my son, I was on Dex...that brought me up to 75,000. Since being out of the hospital my platelets went up to 34,000 on their own, but again fell to 10,000. I had winrho a month ago, brought my platelets to 86,000. My last CBC was 7/19, my platelets were at 14,000. Rituxan has been discussed, and at this point I will ry anything. Somedays I am optimistic that something will work, but other days I feel hopeless and scared that I'm not going to see my boys grow up, or that I won't be able to live normally and do the things I love like travelling. This is the new normal. :(

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13 years 8 months ago #6617 by Lorie85
Replied by Lorie85 on topic Re: rollercoaster of emotions
It's Great that you found the board. Welcome, It's a place that has helped me and many others get through the most trying, confusing and emotionally draining part of ITP; the beginning. I was diagnosed at the beginning of this year and have been living with ITP for 6 months now. You'll get through this with the right information to make informed decisions and of course the support of the members of the board who understand what you are going through.

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13 years 8 months ago #6621 by n3ha
Replied by n3ha on topic Re:rollercoaster of emotions
First of all Congrts. How is your baby boy ? :)
It must have been really difficult for you to knw tht u r sufferring with ITP when u were pregnant.
I can understand wht u must have been going thru but relax i think u r strong enough.
Coz u did really well wid low platelets when u were pregnant. i am sure you will recover from ITP and if not will atleast manage to have a safe count.
Just relax and enjoy with your little one :)

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13 years 8 months ago #6622 by stevek
Replied by stevek on topic Re:rollercoaster of emotions
welcome.you have come to the right folks on here on great.prednisone intensifies the highs and lows for me.in fact for me I can tell when my platlets are low by how I,m feeling emotionally.I do not get any other symtoms but the emotional symtoms...But you will learn to deal with it.I chose spenectomy right away.And so so far just stabilized 9 months after. good luck steve

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  • server
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  • newcreationchangingdaily
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13 years 8 months ago #6625 by server
Replied by server on topic Re:rollercoaster of emotions
Hi and Welcome to the boards. Congratulations on the new baby. Rejoice in that first! The rest will fall into place. I think we call all relate to the roller coaster of emotions. We can't stop them from happening, but we can control what we do with them. You can lead a complete full life doing all the things you want to, just gotta be careful in doing them! You have to remember that ITP in itself is not life threatening. Sure things can happen, but things happen to people who don't have ITP too! Stay Strong.

My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
Psalm 73:26
Blessings,
gretchen

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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13 years 8 months ago #6650 by Sandi
Replied by Sandi on topic Re:rollercoaster of emotions
Hello. Congratulations on the baby!

Let me tell you the best advice I got when diagnosed. Yes, ITP is a series of ups and downs, but it is just something that must be managed. You can manage it well or you can be a basket case. It's normal to be an emotional wreck at first, but things will calm down in time.

You will live to see your children grow. Dying from ITP is very rare and usually happens if a person cannot get counts up at all. Some people live with counts below 10 and do fine. There are quite a few treatments available these days and usually something works.

You can manage this and although it seems like the bottom dropped out of your world, it didn't. You can still walk, talk, watch the sun rise, cuddle your baby, laugh and cry. Take one day at a time and just do what you normally do in between doctor visits. Most people find that they lead nearly normal lives with ITP.

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13 years 8 months ago #6654 by Michelle
Replied by Michelle on topic Re:rollercoaster of emotions
Although it's sad that people continue getting diagnosed with this disease -
I like reading people's responses to new folks because I still - almost 11 months after diagnosis - go through all of those same emotions. (I've always been a late bloomer though)
Some days are not so bad, but some days are pretty low. On those low days, I find myself mourning for my children and husband over the loss of their mother and wife - I mean, I'm still here, but when my counts are low, I know I'm not the kind of mom/wife they deserve - I'm sad, sluggish, tired - a bit snappy.
But sometimes those low times prompt some really special interactions with my family. It's more of the calming activities - like piling on the bed and reading books to my kids - and definitely a lot of cuddling while watching their cartoons or a movie.
The house might not get cleaned, and we might eat a bit too much take-out - but at the end of the day, they don't mind.

So what exactly was my point - I guess it's just that ITP is really scary. The uncertainty - unpredictability - the feelings of desperation. It's very overwhelming, especially at first when you haven't found something that works for you. And even when you do find something that works, you'll probably still have a certain level of paranoia - watching for signs of a drop.
But day by day, you'll probably find new ways to cope that work for you. And even though I haven't fully surrendered yet myself - I believe it when the other folks here say that eventually you learn to accept it and it becomes just a part of you instead of the whole of you.
I'm so sorry you have to go through this, especially at such a precious time in your life as having a new baby. My kids are young but not babies anymore. You will be around to see your boys grow up.
Anytime you need a lift, just post here and you'll get one. We're all in this together.

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  • Angel85
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  • I am 27 years old from Australia and I have T.A.R Syndrome. My email address is not showing on my profile for some reason so it is blossom_242@hotmail.com for anyone who wants to send me an email.
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13 years 8 months ago #6664 by Angel85
Replied by Angel85 on topic Re:rollercoaster of emotions
You will still be able to do all the normal things that you used to do and like Sandi said, dying from ITP is very rare. People can live with low counts. My counts since April have been under 20 and they are 11 as of yesterdays blood test and i am still going to work and doing all the normal things i have always done.

You just have to be a bit more careful with yourself when they are low and see a doctor at the first sign of any bleeding symptoms. I have lived with low platelets since i was born and i haven't let it stop me doing things i want to do.

I have been on most of the rides at theme parks and have been in Cub Scouts and i used to do dancing and i only gave that up because i have bad knees, not because of my platelets. I used to ride my bike to school and do all those sorts of things, so please don't think that having this means your not going to be able to enjoy your life.

There will be times when your feeling sad and scared and confused and thats okay. It is okay to feel that way as along as u are able to pick yourself back up and move on. I try to live my life as though it could be my last and enjoy every moment and try not to dwell on the bad things that are happening in my life.

I know some people say they understand how u feel and what your going through, but all of us here on this site DO really know how you feel and what your going through and if you need to talk to someone or just vent, we're all here to support each other.

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