More bleeding, bruising, treatments or remission?
Have you come to terms with ITP? Has it become just a part of your life now and not so scary anymore or do you still worry about your platelet count?
Can we ever come to terms with ITP? Do you have days when dealing with ITP, family, friends, work, etc. seem to overwhelm you
like it did with this person.....
It is such a harsh reality to see how our families just
don't get it. They see it all....the vomiting, the headaches, all of it and yet
some of them just don't understand. My sisters and brother don't even call
anymore because they think all I want is money. I am expected to listen to all
of their complaints and problems and pray for them but where are they now?
Where are they when I need them? I think it is harder on my kids because my
husband and I both are dealing with illness. The difference with my husband is
his basically controlled with pills. He had the stroke because he didn't listen
and yet I did nothing to get this crap and somehow I am over reacting when my
teeth are bleeding or I have bruising everywhere. Both of us can't get private
insurance because they don't cover ITP (unless you had prior coverage and were
diagnosed while covered), so we have to rely on medicaid share of cost (you
have to prove that you need medical care). I was told today that when my son
turns 18 we will lose that coverage too. I have my husband telling me that I am
worrying over nothing. NOTHING!!! Maybe to him it's nothing but to me my life
now depends on getting these shots. I missed three weeks and went down to
19,000. I think it hurts more when your husband and children don't seem to
understand. Four years of this....I think it is getting to be too much for
them. I think they just want it to stop but it does not look like that is going
to happen. I have faith and I pray and I push myself to believe but today, I am
just having a bad day. We can't be strong 24/7/365 like everyone expects us to.
What are your thoughts? Leave a comment and let us know how you feel. Is it possible to ever come to terms with ITP?
I have not accepted ITP as a part of life. I still expect to go into remission and never have another problem from it. But I know in al likelihood , that won't happen. For me (and for me only) accepting it is giving up on a cure. I won't give up hope even though that hope is just an illusion for me. I know logically that this disease is probably going to be with me for the rest of my life. I just can't completely accept it.
ReplyDeleteCamie,
ReplyDeleteRemission is possible! We will never be totally ITP free but it can be tamed. Don't give up hope.
For me, acceptance meant not being afraid to go anywhere or do anything, checking to see if bumping my elbow caused a bruise. At first, it was very scary but then I realized I did have a life. There were some things I had to give up like trail riding on my motorcycle (trees always seemed to jump out and grab me)but using common sense I could live a normal life with ITP.
Initially, I resisted the idea that I would be an individual who had a medical condition for which there is no cure. I was too young to be a "sickie". That's why I also resisted wearing a medical bracelet...even though both my hema and PCP insisted that I wear one. I didn't like the visual reminder countless times a day whenever I looked at my wrist or felt it slide on my arm. However, after several relapses including one particular one, I've decided to embrace it and make it part of who I am. It is now part of what makes me who I am; just like I'm a husband, I'm a father, and I'm also an ITP patient. I am choosing to focus on the positive aspects. It has given me infinitely more care and compassion for those also struggling. I have credibility with them because I can tell them my story. It's helped me to embrace life and given me the courage to pursue my dreams. There are days I struggle and I need others to remind me. While I'm fortunate to be doing well now, I also live with the consciousness that "what goes up can go down". If people ask me why I have a medical bracelet, I no longer try to downplay it, but I tell them why.
ReplyDeleteI wish all my fellow ITPers lots of high platelets for 2013 and beyond.
Thank you Dave!
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