When do you stop being scared?

Been diagnosed since mid July, counts as low as 15, received ivig and had the bad hea dache, chills etc.. but did bring my counts up to 122. Since then counts fell, have been on pred and dexa and now my counts are down to 27. I live alone and I am afraid that something will happen. I know it is all new and trying to cope, but finding it tough. Being on pred doesnt help any!

I am going to be going in for another round of ivig and then Nplate is the plan but waiting for approval from my extended medical coverage. I feel like I cant make any plans for anything as I never know what is happening with my counts.

Can anyone recommend books or anything to help me cope better with this new life of mine, and will it ever seem normal again...

Yes, life will be normal again. The more you learn about ITP, the more comfortable you become in dealing with it. I know it seems scary, but very few people ever die from ITP or have serious complications from it. I think the thing that made me stop fearing low counts was to actually have low counts and find that I survived it. After that, I stopped being afraid of it.

Make plans, keep living. Try to keep life as normal as possible. In the long run, it helps a lot to keep your mind off of things and gives you something to look forward to. Life does not have to stop; you just fit ITP and the treatments into it.

Stick with us, you'll be fine!

Yeah Bev, you will be fine. It is a bit scary at first but as you go on you will learn to relax about this and start to worry about the other things in life.
Prednisone will make you feel pretty bad, what dose are you on? Do you have any family to support you? I notice in another thread you had a BMB how was the results?

Can't really recommend any books as such, I have read Wish by Spirit what a journey Joan had. If you stay here and post any questions or fears you have there is usually some one around that will help.
Life just seems to find a new normal and you do learn to roll with the punches and really enjoy the high counts. Start making those plans because you will be able to do them, you just need time to get your head around this.
Milly.

Hi Bev
I have been diagnosed since 1994 and have periodic drops from time to time,this year being the worst on the ITP front. So I hope I can help you answer your questions.

My outlook to the world of health is entirely differnt to the average so it seems which may or may not be of help. The biggest secret I find is to literally live for the day. Young children don't have concept of the future, tomorrow on the whole. Try and capture back that outlook towards where are your platlets going to be in a week time? Do you book that holiday etc? Only you will be able to answer that and in time you will learn that yes you can book. Just make sure your travel insurance stuff is in working order. Relax and book that holiday etc.

To be honest with you, I wasn't scared ever in the first place so I can't answer from a personal experience. Frustrated sometimes when had to cancel or miss things. But never scared because I know I be alright.

You might want to check out some of the self help books may be that deal with fear and anxiety in general to help you put things on track again? I don't know which ones you have altogether in USA? I am English and been having CBT - Cognitive Behaviour Therapy in England and that is just as though you are doing the book at home, just that you have a professional to talk through the answers etc. May be your local libary have a self help section and you can browse what is on offer and choose one you can work through? By the way I am not having CBT because of the platelet dissorder but a mixture between how I think about 'others' in the world, get along and coping stratergies throughout the dark days of winter.... etc. So I aint perfect, far from it. But able to access help.

Perhaps for you the book "Feel the fear and do it anyways" By Susan Jeffers. It is American so I guess you can buy it there. She gives lots of exercises on getting on regardless of the fear. You are scared right now because of the low platelets. The exercises may help you manage your fear. It is natural to be affraid at the beginning of anything and you are at the beginning. 3 month isn't a long time. There aren't many novels etc about ITP though I did accidently come across one in our own library would you believe it right at the beginning of my journey. Though I don't actually know if it was about the ITP because I didn't get through it. The individual was writing about her bruises, the stages of the bruises and not having a bath. It was american but no idea what it was called. Gives me an idea though to go in tomorrow lunch time and scroll down the catalogue system and see if I can find it by chance. It was (1997) kind of time when I came across it.

What are your hobbies and interests by the way?

Thanks everyone for your good thoughts. I was just told my health insurance will not cover my nplate and at $1000.00 a week it wont be an option for me... onto step two, they wont cover rituxan either but not sure of the cost of that drug... onto step 3...

I am a very active person, I play ice hockey and ringette, yoga, skiing etc.. I already gave up my hockey until January in hopes I am stable then and can resume playing.

I am so thankful for this site, it is a place I can come where I know everyone understands. My fiancee left me 3 weeks ago couldnt handle my diagnosis, so have been feeling extra-alone.

I have a really good family support system which I am so thankful for. I know things will get better, it just feels like I take one step forward and 3 back. I had a reaction to ivig, but was not pre-medicated, so tomorrow I will be and am only having one infusion, so hope it goes well.

My bone marrow test came back definite ITP, I am also on antibiotics right now as I was tested positive for H Pylori...

I know deep breath...:ohmy:

Bev,
Treating the h pylori might make a big difference especially since you were diagnosed pretty recently. Some of the research suggests that treating h pylori soon after diagnosis has more of an impact on platelets than if you wait a long time.
Erica

Bev - you can try appealing the insurance denial. That has worked for me in the past with several drugs.

Bev
Totally agree with Erica about the treatment of h pylori, I was positive for it last year but don't forget get a second test done about six weeks after first treatment because I still tested positive after first antibiotic treatment.

No, when my counts are low, I never stop being scared. Even after 40+ years of this. It's called being human. But the fear does not deprive me of free will. Even scared, I have the choice to let the fear ruin my life, or not. ITP won't ruin my life, almost certainly, so the issue isn't ITP. The issue is fear. If you don't fear low counts, then you aren't paying attention.

I have a little quote taped to my desk: "If you have fear of some pain or suffering, you should examine whether there is anything you can do about it. If you can, there is no need to worry about it; if you cannot do anything, then there is also no need to worry." The best treatment for the fear is, of course, education. With ITP, knowledge controls, but does not end, the fear. Nor should it. The fear reminds me to love every minute of my life. The fear reminds me that, ultimately, the answer to almost everything is compassion.

You have many, many choices with ITP. Not always easy choices, especially when insurance is involved, but choices just the same. Remember, baby steps, one at a time. What is the next action you need to do? Focus on that, not next year or next month or even next week. One baby step at a time, today, that's it. ITP is a journey, a path, and you walk along armed with the knowledge that, for virtually everyone, ITP is not the end and for most it is relegated to an inconvenience, after the initial shock and understandable (and expected) fear. And, even if you are one of the very few for whom ITP is more than this, would you be doing anything differently than you are now? Then why not do those things, now?

It gets better. It is doable. It is live-able. ITP has gone with me on my journey -- getting married, law school, my family, my children, many mountains climbed and a determination to conquer a few more, many long lines at Disneyland and many sand castles on beaches spread across the globe. I am not naive about ITP or its fear -- far from it. But, neither do I let the fear control me or my life. Each one of us has that simple choice to make. It's not always easy, but when it is not, friends, family and education fill the gap.

Remember, the presence of fear means only that fear is present, nothing more. The fear does not mean you are going to die from ITP, it does not mean your counts will drop next week, it does not mean your Rituxan won't work. In fact, it does not mean anything about the future; it means only that you are responding, quite appropriately, to a difficult situation. Educate yourself, have a plan, take it one step at a time, get your sleep, eat a healthy diet, and be compassionate to others in all that you do. Then this is doable, almost easily most of the time. And, when it is not, you ask for help.

At the risk of sounding like a Family Feud contestant, I must say "Good answer, good answer"!

There must be something wrong with me as I've never really been scared.

Speaker at the UK Conference said something obvious but that many needed to hear and that was that you won't start to come to terms with having a disorder until you stop wanting things to be 'back to normal' and acknowledge that you have this and start from now with what you've got.. adjusting life appropriately. Her words have stuck in my mind and I now only work part-time because working full-time makes me too tired, and I don't try to do too many things in one day so I feel that I have accepted my limitations and am more content because of it.

I get a little scared sometimes, I think it is more to do with when I think about what could happen but I am finding as time goes on I really don't think like this too much.
I am also like you Ann I have cut down work hours and slowly letting go of my old normal, I am not really struggling with the new normal as I think my life is now better then it was, work has become not so important but family and friends are now number 1 on the list of priorities.

Sandi,
Maybe Gort's latest posting could be added to the aptly named "Excellent Advice" in the 'sticky note' area of this section. I think it could be applied to many challenges and not just ITP. Would be good to have here, at least until his book comes out!

April

Hi Ann
like me then for I've never been scared of ITP either. I get 'anxious' as to whether I should ring the day/ward or not as don't want a wasted journey to Sheffield and back etc but not scared of the ITP at all. There are other things that the nurses do to me that I really hate and then am not scared. Just hate having my ears cleaned out that it takes me a long time to deal with it. But am not scared. I was born ill so I know how to handle being ill for myself. I don't like it when others are ill. But know what to do for myself. Though spent last few years being scared of contracting septicemia again because I had it bad. Very lucky to be here. But even that I have now more or less hit the nail on the head through CBT and having enough of a life to be getting on with I guess. I also have God so when I do get really scared I can pray (not that I use God this way but God is there if get that scared) and talk to a priest - now we have one and the one we have, I already know I can talk to him as can do when everything is okay....

May be we English have a different outlook or different set of experiences about it. We can obtain treatment without worrying about insurance may be a big factor for not being scared? Perhaps its because I have a very good professional relationship with my heamo department or whatever? I don't know but like you I am not scared of ITP and hence I hang around and try to help others though I do find it hard sometimes because my experience seems totally different to anyone here from what I read:-)

Well, I'm not English and I was okay with ITP. I think I was scared before the diagnosis, but once I got it, I was okay. My sister had had ITP so I knew what it was. I think I feared having to treat more than low counts because of the side effects. In either case, I kept doing my normal stuff but it was hard.

I wish I could cut back - I have no choice. Those of you that can are very lucky.

April - done!

I think where you live is a big factor in the choices you make and I don't know that I would have made the decisions that I have made in a different country.
I am unsure of what the health system is like in both the UK and USA but here it is funded by a levy on all workers and everyone gets treated at a hospital regardless of income, you can choose to pay health insurance and this then gives you the right to be treated as what we class as a private patient (your choice of doctor, private room or private hospital). Does this work? To a point yes but the hospitals are always over budgets but it does ensure that all people receive at least basic medical care.
The same can be said for income, because we have a taxation system that is tiered to income often you can work less hours for very similar income because if you can drop a level on taxation you pay less tax then you income increases, so this is what happened with me and this was a big factor in why I cut my hours at work (same income and same healthcare).
So I don't think nationality has to much to do with the decisions it is more to do with the economics of the country you live in.
I do consider myself lucky that I had those choices and really feel for those that don't. It is one of the thoughts that I have for you Sandi would your life be easier if you didn't have quiet so much on your plate.

Ha - you aren't kidding! Yes, life would be much easier if I could cut back.

I know I'm really lucky. I have a bit of savings that was supposed to be for retirement but a quick change of plan means that I now earn less and am spending savings for some things. I may have problems when I retire, and the government has just put my retirement date back a couple of years, but I'll worry about that later. I look forward to free tube and bus travel in retirement and hope things don't change by the time I get there as getting out and about will be very important.

I expect others working more now will have far better retirement pensions than me but that's the choice I felt I had to make.

Rhiannon if being English made one not worry or be even a little bit scared I'd become a Brit

Actually it was my British trained hematologist who scared the heck out of me - she would panic if my count went down, she had me in tears a number of times.

I suppose I have never been 'scared' having ITP. The treatments can get pretty annoying at times, and it does get very frustrating when counts drop or a particular treatment stops working. I suppose I have been angry more than scared.
The closest I came to scared was early in the game, when I allowed myself to be talked into going to the ER, then was admitted, and spent a few days in The James. I wasn't scared so much as I was smacked in the head with reality; While signing the 'power of attorney' and 'do not resuscitate' forms. That will bring you into the reality of the situation really fast.
I've since learned that a count of 4k or less does not necessitate me going to the hospital. I still get ticked-off about this silly condition at times though.
.

Thanks everyone for taking the time to answer me, I really do appreciate it. I went for an ivig infusion last wed, so anxious to see if my counts are climbing plus 1 week on h-pylori treatment 3 more to go!!

Also got denied for Rituxan but in Ontario there is a relief fund you can apply to so my Dr has done that for me... here's hoping, or maybe just maybe with the h-pylori gone, things might improve.

Thanks to all, you guys and gals are Fantastic!!!!!!

Hey Bev,

I've just finished reading "Wish by Spirit" by Joan W Young and it gave me new venues to explore. It's an excellent book...specifically from the point of view of an ITP patient (the founder of this site). She went thru hell and back and found a combination that worked for her. Everyone is different and everyone reacts differently to the medications and alternative medicines out there. The trick is to keep going and to never give up...eventually there is a combination that will work for you. I highly recommend reading it. Good luck!

Hi Bev,
I just want you to know that I've been reading this and am thinking about you. Hang in there. Things will calm down. My emotions were all over the place when I first got ITP last christmas and fear was very definately one of them. I had been so active and healthy before itp. But in the midst of everything I could still acknowledge that I was happy and that my life was pretty good. Its all about what you choose to focus on. Like milly said you reach a new normal and you wait to be able to do what you could do before itp or find things that you can do in spite of itp. My platelets are stable now and high enough for me to do pretty much anything. I'm still careful though and sometimes find anxiety creeping in. But gort was so right by saying to live in the present. That's really all we have. When the present is even a little better than the past just sit and breathe in it. Hope all goes well for you.

Bev -
Hang in there. I just stopped being scared and I'm about 22 months into this dreadful condition. Initially I used to fear the worst especially since I live alone too but I have been just fine. Granted my energy levels are not as high as they used to be but I am able to work regular days or work from home the days I need to.

I also took the H pylori treatment right after my diagnosis because I asked to be tested after leaving the hospital. The antibiotics made my platelets shoot up high to the 200's but as I finished the treatment the platelets crashed. I stayed on prednisone for a year and the prednisone really gave me the "sick" feeling all the time. I finally told my Doctor I wanted to be off. After a huge fight with him, he took me off.

I've been living with counts in the teens and 30's for about a year and I've been doing just fine. The weakness and tiredness is also there but I tap into any moments of high energy to go walking. Like Gort said, I am taking every thing one day at a time. Still considering surgery but weighing my options carefully. Without a spleen and still having low platelets, things could get much more difficult. For now, let's just say GOD is keeping my happy and smiling always.

There is always someone out there who is going through much worse than we are and wishing that their condition was something like ITP that is manageable. When I was taking infusions outpatient, I would see people suffering from terminal conditions getting their infusions and still being cheerful. ITP to them was just one of the many side issues they were facing. So it put things in perspective for me.

Charmed, are you advertising for a business that results in a profit for you? Because that is not allowed here.
Erica

Sounded hoaky to me. Long term care? Entire family depressed? Wow.