This week is going to be different....
Below is a question that I'd like to have everyone comment on. Just click the comment icon and tell us what you think.
How does ITP affect your relationships with your family and friends? Have you discovered that some of the people in your life have "disappeared" or have they been supportive and try to understand?
Do you have a question you want addressed? Please leave it in the comments. Thanks for supporting our blog!
I was so fortunate to have a very supportive husband and wonderful parents. My folks were fighting cancer and both were having weekly chemo treatments, but my father never failed to call me every day. My hubby went to every doctors appointment, every treatment and never left my side when I was in the hospital.
ReplyDeleteFriends were a mix of "you don't look sick", "why aren't you working?" along with staunch supporters. You always can tell who your true friends are when something like this happens.
My family, friends and co-workers have always been very supportive. I never really got the "you don't look sick" comments because I really did look sick. I was covered with petechiae, had hemorrhaging in my left eye, huge blood sacks in my mouth, bood in my urine, vomiting blood and coughing up blood.
ReplyDeleteI think the biggest question that people had was: "is it contagious?"
Thanks for sharing, Keith. I was asked about being contagious as well
DeleteIt's about a 50/50 split. Some "old" friends were afraid of blood & afraid I just might start bleeding on them. Those "old" friends have been told "you can't catch it" but they are gone. The 50+% that have hung around have been great! Before all this they would call once every two weeks if I had not called them. Now, 2 to 3 calls a week.
ReplyDeleteHap, it's great to have friends that stick with you through thick and thin.
DeleteIn a twisted way I now know who my "TRUE" friends are.
DeleteHap, that's very true for many of us...
DeleteIt has made me closer to my wife and our children. It has helped me focus on them and be a better husband and father. Before I had my splenectomy, my mother called me and gave me incredible grief about having it. I ended up having to console when I needed her comfort. Needless to say, her terrible response increased the damage in our already challenging relationship. I've also made many new friends (the ITP community is too wonderful for words), became friends with some of my colleagues. I have also met many wonderful medical personnel who I look forward to seeing when I go in for CBCs and checkups.
ReplyDeleteI'm sorry about the relationship with you Mom but glad your wife and children are so supportive. Our online friends were a god-send for me as well.
DeleteI have a wonderful boss but some co-workers don't believe that I'm sick... I work for a veterinarian so he knows what ITP is and what I can and shouldn't due. So I have lost people in my life and gained more enemy's, I just don't get it. You can't catch what we have and I feel like I'm being alienated. :(
ReplyDeleteAmber, That's terrible the way you are being treated by your co-workers. They do not understand what ITP is, maybe you could get some info brochures from PDSA and hand them out or maybe your boss could give them a little talk explaining ITP and why you don't have to do certain things. Knowledge is key in dealing with ITP, both for yourself and others. Wishing you the best.
DeleteYes my boss is going to have a little talk with them.
DeleteThat's great, Amber!
DeleteThings have changed around the office, and all can do is thank my wonderful boss. Been here for 13 years now.
DeleteSo glad for you Amber!
DeleteI never really told anyone about it, apart frm my family, work I told in the last year as was lookin pale and getting tired, and the bruises were more obvious I have had this five years, and because I didn't really talk about it nobody really asked how I was,but most of the time they just didn't ask, or had forgotten I'd got it... felt alone a lot of the time, but I'm sure if I said I had cancer may have been different!!!
ReplyDeleteCo-workers, friends and even family sometimes don't know how to react to something they know nothing about. Most of us have all gone through the 'feeling alone' even when support is available.
DeleteGetting to know other ITPers through online support groups can help help with the loneliness as well as educating those around you about ITP so they can understand what you are going through.
Thanks Greta , since joining ITP support group, I have talked more about it, and feel better, some still dont understand , but I can't worry about that.. I have to think about what's best for me, and how to get better. once again thank you xx
DeleteI am so glad that you have been helped by the support groups and are able to share with others how you feel and what you think. There are people who will never understand, unfortunately. Think positive and you will be one step closer to getting better.
DeleteMy boyfreind found out 1 month ago he has itp and I guess I was scared it was something I could catch (sexually) so i called to find out more info from a nurse line and she did not know much about this disease.
ReplyDeleteHi there Anonymous,
DeleteITP is not contagious. It is an immune system disorder that affects the platelets in your boyfriend's blood. His immune system is producing antibodies that attach to the platelets targeting them for destruction by the white blood cells. There are numerous treatments for ITP and doctors usually start with steroids (Prednisone)and go from there. For more information go to www.pdsa.org There are also ITP support groups on Facebook.
PDSA is a fantastic source to learn about ITP. It's sad that many health professionals are uninformed about this chronic blood disorder. Hopefully your boyfriend will find a good hematologist to guide you both through your journey with ITP.
Yes thank you Greta I waited allday for a reply I have been worried all month he has not been because he does not think its serious since his platelets went back normal from the Prednisone they gave him alot. it dropped all the way to 3 he said he didnt even know he was sick until he saw blood in his urin. well thank you anyhow I feel so much better your site has helped me alot.
ReplyDeleteIt can be serious. I do not want to scare you, but the high platelet count from the Prednisone will drop with the decrease in medicine. He needs to keep up with his platelet count as he tapers off the Pred. There are cases of spontaneous remission but that is few and far between. Please try to make him follow up with his doctor. All it takes is a simple blood test (CBC) and that can be done in just about any medical facility.
ReplyDeleteA person does not necessarily feel sick with ITP. Fatigue, Bruising, Bleeding are the most common symptoms. Please have him get a CBC. It's better to be safe than sorry.
Have your boyfriend take a look at the PDSA website with you. It will answer a lot of questions and teach you what ITP is all about.
I get this all the time the you dont look sick.. i am usually just tired but have a 16 moth old daughter some people will get on me because i cant stay out late but they just dont understand my boyfriend has called me a grandma its awful!
ReplyDeleteAnonymous,
DeleteITP is not very well known and the people around you do not understand what you are going through. I suggest you get some brochures from www.pdsa.org and share them with your boyfriend and the others who question you. I am sorry for what you are going through and hope this suggestion helps.
Whilst I was having tests, as I had white cell problems, everyone seemed to treat me as though I had Luekemia, and that I was seriously ill. All my friends and family were really supportive and I saw more of them, whilst I was having bruising, nose bleeds, blood shot eyes, and my bone marrow. It made me think about my life and helped me put a lot of things in perspective.
ReplyDeleteMy work colleagues and my bosses were initially worried and supportive, but after I was diagnosed with ITP, as no one had ever heard ot it, I got all the remarks well you don't look ill, can you just take drugs to get rid of it. The more time I had off for blood tests, (I was going in weekly for 2 months). The more I felt my bosses were less interested and thought I was exaggerating the condition. They did not ask me too, but I ended up taking in all my blood records as proof, just to try to get them to appreciate that I do have to be checked and it's not just me trying to skip work.
I think they just do not understand it and unless they research it, I guess they won't.
Anonymous,
DeleteIt may help if you got some of the pamphlets from PDSA to hand out to your family and work mates. www.pdsa.org
ITP can be very deceiving especially to folks who do not understand what it is. They think if you don't look sick or act like you're sick then you are not sick. It is very frustrating for you and maybe you can help them to understand it better with the PDSA handouts. Wishing you the best.
Thank you for your advice Greta, I will do that.
DeleteWork are the worst, they really do not know what to make of it. Getting the information for them so that they can digest it in their own time, might make a difference and validate what is happening to me.
Thanks again.
Another thing you can do is check out the ITP Support Groups on Facebook, if you haven't already. Wishing you the best!
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