The good side of ITP

I was just reading a post by Sandi about the positive side of all this ITP, and it made me think on what I have learnt since been diagnosed. I hope others will share as well.
I have made major changes in my life, I have gone from working a fifty to sixty hour week in a management position to working thirty hours a week (mainly due to side effects of pred). The pay cut was hard to adjust to but I have so much more family time so this is a positive.
I have learnt how much my husband and family love me by the way they sit in hospitals and doctors visit with me and we all know that is nearly a full time job sometimes;)
I have learnt that my true friends are the ones that are walking in the door as others are walking out(some stick by you others give up).
I take inspiration from the people on these boards that have battled with this for many years. Also from the many small children and thier parents, how hard must it be to see your child suffer.
I see the regulars on here that must have thier own battles helping others, I hope my knowledge will someday make a difference in someones life like those that have answered my posts have done for me.
I hope that others will post the positives that have come into thier lives, good news stories always help, things could be worse.

Hi Milly,

I also read Sandi's post earlier and was thinking about the positives of my son's ITP - some of them might seem a bit strange!

a) I've spent some lovely time with him in hospitals and doctor's waiting rooms. We've got 4 kids and time alone with each one is a rarity sometimes - I've got particularly fond memories of a train trip to Manchester to go to the Children's Hospital and going to get a pizza afterwards!

b)I've realised how much other people care both for my son and for the rest of us - when he was first diagnosed one of my aunties regularly phoned each week to ask how he was, and I was so grateful for her concern. The same goes for my employers who never batted an eyelid when I was taking time out to take him for weekly blood tests.

c) I've learnt that I can deal with having a child with ITP - given that I used to panic about colds and coughs, this is a big deal for me!

d) My son is the star of his biology class having given the class a 5 minute talk about the different components of blood when the teacher was only expecting the kids to know about red and white blood cells!

e) Finally, during long hours in hospital waiting rooms (particularly oncology ones), I've learnt how very lucky we are to have four healthy children, because I do consider that I've got four very healthy children, even if one of them happens to have ITP!

So, of course I would prefer that my son's count was in the 100s rather than 10s, but I don't view the last two years negatively either.

Ali

Good job, ladies! My positive is that I have met some incredible people on this Board over the years, some of which I consider to be good friends. I have also learned what true medication side effects are, and I can be more empathetic toward people having a hard time on meds. Before Prednisone, I thought the people I knew were just being dramatic. I have also learned that life throws curve balls and you have to adjust and roll with the punches. I learned to push though it all and feel proud of myself that I could do it. I also learned that no matter how awful things seem, they could always be worse and I try to consider myself lucky.

I wish I could say that I learned to stop and smell the roses. I still have problems doing that...too much to do and so little time!

Being very sick mainly with ITP between 2005-2007, one thing that changed for me in a good way is I got a lot less 'thing' oriented. When I was very sick I got thinking about how if I was to die, all my 'stuff' was going to be someone's problem to deal with not treasure. Since then I've gotten rid of so much stuff (although I still have more than I need that's for sure, if you look at how people live around the world). I also don't acquire as much, and I'm much more aware of waste.

I also feel a lot sturdier in some ways. I used to get shorted on sleep one night and feel oh I'm so tired and weak, but now I got to see what feeling weak was really like, looking at my car across the parking lot and wondering if I'd be ok walking from here to there, wondering if I'd be ok standing up and getting off the bus at my stop. So the minor un-wellnesses in life feel more minor. I'm a little more robust.
Erica

I have gamma transfusions aprox once a month (depending on the count) and I now look on it as my time to take a break, catch up on my reading and do crosswords. I had a call tonight to go to the "Spa" tomorrow (my count was/is 8K:( ) and I think "thank goodness after the week I have had I need this Christine time" I see people in a much worse state - people having chemo and other types of treatments which makes me and ITP seem quite trivial (I know it's not)
I am also glad if I have to have ITP at least it has been diagnosed. I was diagnosed in 1978 and doctors, and treatments,are far more advanced since then (although more has to be done) - now I sound like an "oldie" only chronologically tho'!!!!
Look for the positive in a situation and things don't seem so bad - that's my motto.
Christine

Thanks all for your reply. Sometimes you just need to stop and think of things a little differently.
Ali, it must be so hard to be in your position but I hope soon your sons counts are in the 100 and these memories are ones he will carry for the rest of his life, he will remember the good times he had with you.
Sandi your strength amazes me I have read in posts what you live with and you have every reason to be proud, do learn to stop and smell the roses though.
Erica, you are so right your stuff as you say does not define you, you are a great help to others on this board, be proud of that and thankyou.
Christine maybe one day your spa time will be real spa time, you have been doing this ITP thing for so long. I bet you have read some good books over the years.
As Sandi says sometimes you do get the curve ball, but if anyone had to get the curve ball in my family I am glad it was me. I can handle this.

Milly - you sound just like me. I've said the same thing 100 times; if someone had to get it, I'm glad it was me.

Weird as it sounds, I think having ITP has actually given me a new lease of life. I live with ITP, I don't suffer with it. The first 6 months were tough, but 2 and a bit years on and I know what my body can and can't cope with. I manage my condition drug free (I just try to take care of myself, and touch wood, it seems to be working) and I'd like to keep it that way as long as I can.

My friend and salsa teacher Lee was killed in a car accident in 2008, just 2 days after his 24th birthday. I was diagnosed with ITP just over a month later. These two things made me realise just how precious life is, and that I have to stop taking a backseat, and get out there and enjoy it. A few months later i went for a salsa weekend in Cyprus all by myself, because I wanted to. I was on 30mg of steroids, over inflated and stretchmarks to boot, and I still went and danced every night and let complete strangers see me in a bikini, evem when every gut instinct wanted me to stay covered up at home in Englsnd and feel sorry for myself. But I had nothing to be ashamed of and people I'd only known for a few hours made me feel welcome and were very supportive - some were even in awe that I'd come at all when I was clearly having a rough time with the side effects!

ITP has also been a real wake up call to who your real friends are - I suppose in a way i didn't really lose any friends, because the people I shut out of my life didn't actually care about me that much - if they did, they would've made more effort to see me and to understand what I was going through. These are people who I used to get drunk with on nights out - people who can't cope with a sober person in their group as it puts a downer on their night. Apparently following doctors recommendations to not drink alcohol is 'uncool'. My life is so much nicer without them.

My friend Tom doesn't like alcohol - he's tried everything and he just can't find anything he likes the taste of! Every time he's out, he gets the spanish inquisition and a barrage of abuse for not liking it. Me? All i have to do is utter the words 'medical condition' and I get off scot-free (albeit with an explanation of what said condition is). And i can still drive home at the end of the night.

I remember being in hospital and them running tests for hepatitis, HIV and leukemia and how relieved I was that I was clear for all 3. There are plenty of worse things I could have. My friend Ryan was diagnosed with ALL (acute lymphoblastic leukemia) in January and that broke my heart - not because i thought he was going to die, but because of all the unpleasant treatments he has to go through to get better. He's been really strong and I am so in awe of him - he came through his first bout of chemo OK, but he's had a really rough time with the 2nd lot. He's still got a 3rd round to go. If at any point I start feeling sorry for myself, I think of him - if he can battle on through it, so can I.

I've really worked out what it is that makes me happy - good friends, dancing and theatre. I'm the happiest I've been in my life that I have been for years.

I have ITP - ITP does not have me.

You are totally right Aurehsalla, one of the things that amazed me when I got ITP was the reaction of my friends.Some stuck around for the intial drama (when they thought I might have cancer),some left because of the effects of the prednisone(can't say I blame them though I wasn't a very nice person, crying alot, very depressed). I did try to explain the medication to them but it was all to hard for them.
Then I have the friends that are still with me today, these are the ones that I love dearly.
I am unsure of your age but you look young, I admire all of the people on this board especially those that have been doing this ITP thing for years, also young people that have to deal with this and do so with so much strength.
Good for you and stay happy as you are and keep that salsa dancing up.

I'll be 28 in July.

How much i love my wife and kids and my family and friends ,not that i did not know this before but i'd taken my eye off the ball simply because of how busy we all are.

i was pretty laid back before but now im almost horizontal nothing really gets my back up , embarssingly i've read more books recently than i have my entire life (8 in the past 9 weeks ) which i really enjoy. Also 8 weeks off work with the kids especially after the initial shock /fear of the things they test you for has been nothing short of magnificent, i definitley need them more than they need me.

i never ever realised just how good i've got it

I have had the best laugh at your laid back line, that is so funny. And it seems to be common that we ITPers learn to appreciate our families more and this can only be a good thing.
Since I was diagnosed I have shared some really special times with my husband and family as well.
I personally think that this has made my life better in a strange way(changed my focus),slowed things down.
Thanks for the reply jpb.

How do you slow down? I think the more I get hit with, the harder I push myself to prove I can keep up. Type A personality. I need lessons!

Sandi, I used to be Type A but know I ask myself the question "How important is this in the grand scheme of things?" Usually the answer is not important. This may sound easy but it's not and my Type A comes screaming through at different times:cheer:
Christine

I can understand how you both feel, it is hard to slow down. I have gone from working 50 to 55 hour weeks down to 30.(boy was there some tears over this, I gave up a job I had worked for for 10 years and only been in it 15 months when I got itp). The thing that made it bearable was my 12 year old Grand Daughter said to me one day "Nan I want you here with me, I dont want you coming home from work so tired and I want you to be better" this broke my heart.She is a terrific kid who has already decided as soon as she can she is giving blood so she can help people like me.
I do understand that thing about pushing yourself though I was always the strong one but Prednisone soon took that out of me, I turned into a blubbering mess.Heaps better now though and some things I did when on prednisone I now have a really good laugh at.