Emotional issues from ITP? Please help.

I am 23 years old. Last April I was diagnosed with ITP. I had a routine physical and was previously anemic, so my doctor assumed it was low iron responsible for my fatigue. It turned out all my counts were fine except my platelets. They were 9,000. The word platelet never had any meaning to me until now. It was found I somehow had mono. Well of course I started with the ups and downs on prednisdone changing my dosing CONSTANTLY. Never again will I take this, I was a terrible moody bitch the whole time. I never knew how I felt about anything. I did treatments of Rituxan and that didn't help at all. Since, I have been getting IVIG every 2-3 months to get my platelets to a normal level but still they come crashing down and the bruises return. In this same year I had broken up with a controlling guy, lost my 17 yr old dog, and 2 grandparents. Me, who never bottles her emotions, became completely apathetic. Here it is a year later and I find it impossible to have a normal relationship. I'm still struggling with ITP and probably always will, but I'm so bitter and angry that I keep getting false hopes only to be let down. I take this out on my boyfriend, I don't want to be close to him at all because I still haven't fully dealt with my health condition. Is this normal? Should I seek counseling? I have been looking into Promacta and random natural treatments but this is ruining my life. Between the steroids and bruising, my body image is totally trashed. I've always had issues with my body anyway. Can anyone help me with any advice?
Thank you
Jillian

Most of what you're feeling is normal and some you can make better. I can relate to the difficult emotions regarding the whole situation. You've had a crappy year. Pred messes with you. The unstable counts mess with you. Stress in general just adds to the pressure. You do need to vent, there's also nothing wrong with councelling. You deserve any help you can get. You may even want to ask about some anxiety meds.

Getting IVIG every 2-3 months is pretty good. Mine only lasts for 2-3wks. How often do you get your count done?

There's a lot of good advise here.

Oh, I wish I had some great advice for you, but I don't. I'm sorry. I can only say that you can come here anytime you want and vent. We all will listen, I promise!

My opinion - I don't think it is normal. I've had ITP almost 21 years and never felt that way [on prednisone almost 4 years and yes I was a bitch - pity my family huh?!].

A lot has happened to you in the past year - it may help to have someone to talk to.

Good luck to you!

Oh, Jillian! What a year for you, darlin'!

When we were just about at the end of our rope, my daughter and I were going to start yoga class---OOOMMMMM---but it sounds like you might want some KICKBOXING instead!!! How much are you bruising? Maybe you can do it for a few weeks after your IVIg treatments, then give it a rest til you re-boost!

You know, you are NOT out of options! N-plate, Win-Rho and more... I wish the Rituxan had been kinder to you... Ann, Caitlin's (23) Mom

Jilian:

It's perfectly normal to have all of those emotions in the beginning, but most people settle in and adjust. I would suggest counceling. You also seem to have lost hope - ITP is not always a life time thing and there are remissions. Anyone, at any time, can go into remission. IVIG a few times a year isn't a horrible way to go. I know it's not ideal, but if you can get months in between treatments, you're actually not doing bad.

You shouldn't let this destroy you. Look at it this way - it's a disorder that you have to manage. It could be much worse. I'm not trying to minimize what you are going through, but try looking at it with another perspective. A lot of us think it's the worst thing in the world until we look at what others are going through or worse yet, get another autoimmune diagnosis.

well part of the reason is my doctor acts like its gonna change and oh oh this one is gonna work and it actually took several tries of ivig for it to last that long. Is Nplate the one that can mess up bone marrow?

And to Sandi- I know you say most people but as soon as I get diagnosed and start Pred all the other stuff happens so its definitely harder to adjust than most.

also, I get blood tested every week.

Jillian,
I can relate. I was also dx at 23. ITP threw my world into an uproar. My parents were going through a nasty divorce and I can recall sitting getting IVIG listening to my mom go on and on about my dad. I had a wonderful boyfriend who couldnt deal with me being sick. I was dx and shortly after his dad was dx with cancer. Needless to say the relationship didnt work. Steriods are hard, Im on them now this is my 3rd time. And everytime I say I wont do it again and here I am again. Now I have alot of other issues that have since being dx with ITP. But doing a treatment every few months isnt that bad. I got counceling. Ive always had this jaded view of myself. Self image has been hard and going from a sice 12 to 24 in a few weeks well we all know how that goes. I found something that I love. An outlet--this has made such a huge difference in my life. I know that this is hard and overwhelming. Ive been in your spot about a yr ago. I didnt want to deal with all this going on. I know what it feels like to just want to throw your hands up and say now what. This is a great place to vent and to have someone who just listens--and understands what your going through. Last year when this became too much for me I was doing monthly blood work. I stopped. I didnt get bloodwork for months almost a yr. Once I stopped obsessing with numbers and actually doing what was fun my life started to come back together. Talking to someone also helps. Someone who isnt judgemental. It was so hard to open up to a stranger and tell all my dark secrets to but it made me a better person. Ive come to the realization that Im a bitch. At least when Im on the prednisone I can blame it on that. Your past year has been tough--but look what you have made it through...it can only get better from here.

Jillian:

Believe me, I know how horrible Prednisone is. It does turn life upside down...it did for me. Having other life issues on top of it can be difficult. That is one reason why counceling might help, so you can deal with the emotions and talk things through. It is very possible to get to a healthy emotional place with ITP.

Weekly CBC's might be overkill too. Maybe you can talk to your doctor about spreading them out a bit. That would give you a break.

I agree with Sandi. If your ITP is being managed well with IVIG every couple of months then why don't you say that you don't want weekly blood tests. It's a waste of time. Drop it back to two monthly. It's no wonder you are feeling that ITP is taking over your life. You will know if your count drops really low and can go back if that happens between times.

Preds are terrible . I hardly sleep and I have nightmare . I have mood swings. My platelets goes up ,goes down . So we are all in a trip. Vent we all know what u going though. Liz

Jillian,

Take a deep breath, when things are going haywire, you need to find your happy place. What is it that you enjoy doing that can center you? Sewing, reading, watching a movie. This is your life, take control, do whatever it is that you need to do to be yourself and be comfortable. Like all of us, pred was not a fun experience. However, on my down days, I made sure that i was doing what I needed to do. At times it meant telling friends and family that I couldn't talk, that i was fine, but not up for talking or interacting. My happy place was laying in bed reading or going out to Muir woods and hiking. I felt at peach being surrounded by giant redwood trees in a cool environment.
Find your happy place, this is not a death sentence, but this is something you'll eventually accept. It's normal to feel the way you do, it just means you are fighter and you don't give up easily. Once you have some control of how you are going to deal with ITP you'll be okay.

Happy place? Sounds a bit simplistic to me but good luck to anyone that goes along with it. For me, I'd rather stay in the real world and come to terms with the diagnosis.

Ann, i'm sorry my comment appears too simplistic for you. My idea was not to belittle the process one takes to come to terms with the disorder.

Don't you remember the fear and anxiety caused by not knowing what ITP means? I'm glad you were able to adapt so quickly and take life by the horns. Unfortunately, not everyone comes to terms with the diagnosis ss quickly as you. Most of us can't or couldn't due to various reasons including the medication (pred), all of the uncertainties associated with ITP, medical background, emotional maturity, just to name a few of the variables.

Accepting any unusual medical diagnosis isn't easy, but my hope is that Jillian or others like her, pick and chose from all of our comments whatever elements she needs to help her accept the disorder.

Actually, this is a good point...the picking and choosing of comments. Some people need to hear soft comments and some people need a harder approach. When I was first diagnosed, I had a very hard time with the diagnosis and the steroids. You could have called me whiney. I thought I was going out of my mind. It actually helped to hear people tell me that this is not the end of the world, worse things can happen, you can live normally with this. Hearing that gave me a reality check, and I realized that yes, life would be tough, but I could manage to keep going. If others were doing it, so could I, so I did.

Of course everyone needs a sympathetic ear and kind words. That is what support is. But support can also include a "Come on - pick yourself up and live". That is what can be good about all the different comments, even if they sound mean at the time. Sometimes those comments spark someone to move past the denial and depression that can set in. It's not good to be stuck in that so yes, picking and choosing from comments from all these different people can be beneficial.

Oh Jillian,

I know that everyone on here has related in some way to your post. ITP SUCKS! It really does. The disorder in itself can make you feel hopeless, confused, exhausted, and a whole host of other things. I am close to your age, 24, and I was diagnosed when I was 22. I know EXACTLY how you feel. I was scared, depressed, anxious, tired, embarrassed, etc, etc. It's not easy coming to terms with our autoimmune disorder. As I stated above, it SUCKS. But...you have to remember that things could be much worse. As Sandi has said over and over and she use to say to me, we can manage this. Manage your ITP, don't let it manage you. It's definitely not easy being us. But you have to remember that others don't necessarily understand our feelings. Remember, you can always turn to us for support. I'm so sorry that you haven't found your long term treatment method yet, but don't give up! As others have said, your IVIG lasts a pretty long time. Some don't have a remission that long! I remember when I was first diagnosed and I was on the pred dread and I cried myself to sleep EVERY SINGLE NIGHT. Then I kind of "snapped" out of it. If you keep going on like this you aren't living the beautiful life you have before you. I can say this because I was there. And, honestly, sometimes I slip back to that dreaded place every now and again. Your confusion is normal, your feelings are normal...don't let anyone tell you that they didn't feel the same way. Because I'm sure we all did. Unfortunately, we all share this common trait. But we can use this to form friendships and learn from each other. Keep your head up. We're here for you.

Natalie

I wouldn't get my blood tested every week. It makes your count the center of your life. It makes one neurotic and anxious. You should be the center of your life. Take walks. Breathe deep. Dance. Listen to music.
When I stopped making the "illness" so important, it may not have changed my platelet count, but it sure improved my outlook on life.
Prednisone is a bitch, and if it isn't working, get off of it!!! slowly.
if your count is 60K, stop doing anything. you'll be fine.
get tested every two weeks for the next month, and then once a month after that.
and after a few months, every 3 months. unless your count is dropping into the severe danger zone. if your doctor doesn't like it, find someone more supportive.
low platelets can cause depression because serotonin, which is a mood regulator, is transported to the brain by platelets. less platelets, less serotonin, less happy.
therefore, dance, walk, watch happy films, eat dark chocolate.

Hi happy place person.
I'm in Marin too.
Oddly, i was once living in a duplex, and my neighbor also had ITP.
see you at the Headlands sometime!

I'm so sorry to hear that.

I can relate, sort of- at 16 I was diagnosed with ulcerative colitis (another autoimmune disease) and spent the next few years in and out of the hospital, 9 surgeries, tons of horrible drugs including pred up to 150 mg.

It took me a year after my last surgery to start to feel like myself again. The trauma of everything really hit me after it was all over. I think that how you're feeling it completely normal for anyone in your situation.... it is really traumatic to go from thinking you're healthy to having a serious disease and being afraid that it will never be under control and that your life will never be normal again.

Please consider seeing a counselor about it.... I really wish I had. Trying antidepressants can't hurt either. And keep coming here, it helps to connect with other who understand.
Take care and big hugs.

I am now living with itp 10 years. I am a 37 year old man. I had been on an emotional roller coaster early on and it lasted for a good 5 years. I had to quit a job I loved and come to the realization that my health might affect me in some way shape or form for the rest of my life. My numbers currently are 10k or less. But the fact remains I can live with this albeit with some limitations. I received SSD for this disorder and no worrying about money is gone. I' repeat myself I CAN live with this. You sound like you need support in your life. I got counsel help and from time to time medication to help control my depression and anxiety. My close friend also 37 has just been diagnosed with colon and liver cancer and his chances of survival are slim. Thank god I only have ITP....

I am a firm believer that seeing a psychiatrist is a good thing if you have ITP. (I am not saying everyone should, but if you think it could help, I think it is a good idea).

If you think about what you are going through, you have to adjust to a cronic illness, the platelets impact seratonin (didn't spell that right I guess) uptake, pred. has a definite impact on the brain. I got a referral to a great psychiatrist when I was first diagnosed. I don't see him much now, but it really helped me adjust and he has been a great help following drug interactions and watching for other issues. Don't let ITP make you crazy and don't give your life over to it. This is your life. Live it to the fullest and get the help you need to do that. This is a great place to start!