Not the best day.. Hate steroids!

Hi everyone,

Sorry, but I guess I just need to vent. Today I woke up and it wasn't such a good day. My counts are normal, but i'm coming off prednisone this week on Thursday and i'm so afraid my counts will sink. I don't want to be put back on the drug ever again, it makes me feel horrible and I cry on it all the time. I am so afraid of that drug. It has ruined so much for me.

First of, my sister is having a Sweet 16 in May, and she's been preparing for it and I have missed so much because of the darn steriods. This moon face I can't stand it! I really hope it goes away and if it does, hopefully by May for my sisters birthday party. That is honestly what bothers me the most and makes me cry every time I look in the mirror.

I even took a semester off school because of all this, because I am so uncomfortable with my appearance right now, and that makes me feel even worse being that I skipped two grades and school being so important to me, then this happened and now I will miss a semester. And I love school to! But i'm not mentally prepared for it right now.

My boyfriend left to Canada for the summer, right before I started the steriods, and he hasn't seen my new appearance... He gets back two and a half weeks from now and i'm so afraid of what his reaction will be, Because we actually just started dating.

I used to be a very social person and my old job required me to look very well physically and talk to a lot of people. I quit that because I wasn't comfortable at all.

I use to volunteer at the Children's Museum, I quit that to because i'm always so tired. I would work out 24/7 before, now I barely have the energy to get out of bed.

My family is trying be very supportive, and I love them for that!.. but they just don't understand unless they are in my shoes. And my friends have to drag me out of the house to do something when I used to always go out and was all about having a good time. I've missed so many of friends birthday parties, because when I did try to go once, people I hadn't seen in a while would just stare at me and ask "why does you face look like that?" that bothers me a lot and I hate having to explain.


I was always extremely happy, and if you asked anyone they would tell you I am one of the sweetest people you could meet.. And once I started these steroids, it's like I was mad and complained and yelled about everything or at anyone... That isn't me at all ... And that makes me feel ugly on the inside. One friend even told me he couldn't remember the last time I had a smile on my face, and that makes me so upset! Because before I always had a smile on my face! I absolutely hate what these steroids have done. I hate the feeling of being sad and mad and worried all the time. I want my face back and I want my old happy, social, confident self back!

I don't like having ITP. But I guess I don't like steroids even more. Which i'm sure none of us here do. People always tell me I don't deserve this. None of us here do. I always think it's not fair! It's not fair for any of us. I know there are worse things out there, but honestly this has hit me hard.


I'm so sorry for venting this much, but I really have no one to talk to about this, and I suppose all this hit me this morning because I got a phone call from my boyfriend this morning saying how he can't wait to see me and that he doesn't care if my face looks chubby because it will eventually go away.. but what if it doesn't! and my mom came into my room today saying that all I ever do is lay in bed and that I should do something and to stop being so lazy. But she doesn't understand i'm so tired all the time and I don't know why! I'm sure she is getting tired of hearing my whine all the time(I'm not the funnest person to be around lately). My family thinks that this will just magically go away with this steroid treatment, but with ITP, I know it's unpredictable and counts can drop anytime, but they won't listen to me! My doctor keeps telling us this is just a temporary thing and yes, it could be, but it also couldn't, and my family just won't believe me when I tell them... And to top it of today is dorm move-in day, and of course I won't be there because i'm not going to be in school this semester.

I want to feel comfortable going out again, I want to feel confident and beautiful when I pick my boyfriend up at the airport, I want to have the energy to help my sister prepare for her Sweet 16 and go shopping with my mom. Joke around with my dad. Have fun with my friends. I want to feel like my old self again. But I honestly just feel very depressed and like the ugliest person on this planet!

I worry all the time and I hate that! I worry that my counts will drop, I worry that I will be put back on prednisone, I worry that my face will never go back to normal(I seriously cry every time I look in the mirror or see old pictures of myself), I worry I will bleed to death, I worry I will never have even a little bit of my old life back... I bet I sound like a lunatic. I know I might be over exaggerating. I'm sorry. Maybe it's just the steroids speaking... But I just really need a hug right now.

I don't want to sound vain at all, as I am sure I must sound right now, but a lot of changes have happened in the short span of four months. A lot of it is because I hate how my face looks, and I know it's so dumb because there are other things that are more important, but I can't help it... What if it freezes and stays like that?! This and my counts dropping are what worry me the most. And I will forever be afraid of being put back on evil prednisone!

Wow. I wrote a lot. Again sorry guys. But writing this out actually made me feel a little better.

Thank you for reading.

I can understand because the fat face was what I hated most about steroids too. And I'm no oil painting, no beauty, just a normal middle aged woman. But I did so hate that round fat face. Here's the good news. The fat face goes really quickly. I'm betting you'll see a lot of difference in just a couple of weeks.

If your count falls again you don't have to do steroids again. If it comes to treating again, tell your doctor that you want to try something else.

Aly,

Here is a BIG HUG for you!!!!

I was diagnosed Jan 2008 and over the course of 5+ years and on and off prednisone gained 85lbs and yes the moon face to go with it. I have decided to watch and see instead of treat and have been off prednisone since Feb 2013 and the weight is coming off slowly but the moon face is all gone

One side of prednisone is depression, to boot we don't look like we used to - so that does not help. Venting here does!!! We are all here for you and each other!

We each deal with ITP our own way but after a while it becomes something that we opt to live with instead of it consuming all of our time, thought and energy. Don't let it take away your personality and you will find others don't really care about what you look like they just want you to be you!

Lots of Hugs

Cindy Ann

Aly,

Big hug!

It is good to vent here because so many of us have been through the same thing. The prednisone can really zap you mentally, make you depressed. It is hard for people who have not been on it to understand all the effects.

What dose are you on now? Usually at 5mg and under the moon face will go down quickly. Do whatever small exercise or stretching you can do each day.

You should be fine by May for you sisters party. If you have to treat again you can try something different.

About the boyfriend, if he is truly someone who cares for you he will look past the prednisone face. There have been some really supportive boyfriends who have come on this site and tried to help their girlfriends. If he can't get past that he probably isn't someone you'd want to commit long term to anyway.


Don't worry, you will get through this and hopefully will be an even stronger and confident person than before.

Ann, i'm glad to hear it goes away quickly. That makes me calm down.

CindyAnn, it makes me happy to hear the moon face is gone and the weight is coming off. And thank you for the hug! I was so scared this would be permanent.

Dru, I am on 5mg right now every other day, and have been on prednisone for four months. I have noticed a slight reduction in my face, thank goodness! But I still get afraid sometimes it will stop shrinking and freeze. Haha! I just need to stop worrying so much I suppose and be a little more patient. Thank you for the hug!

Thank you all for your replies! I don't know what I would do with out you guys, you all make me feel so much better and truly are wonderful people!

5mg every other day isn't much, so you will be off soon. That moon face will go away, don't worry.

And the good thing is your counts are normal!

Sweet, Sweet Aly,
When I read your posts I automatically go STRAIGHT back five years ago to my 22 year old self when I was diagnosed with our favorite autoimmune disorder...ITP (that's obviously a joke!) Your sincerity is heartfelt and I can see myself in you and what you say. We all know what you mean. We all know what you're going through. And truth be told, our families will just never understand it the way that we do. Prednisone is the devil, through and through. Others don't understand how frustrating it is to be dependent on a drug that makes you feel so, so badly. Alas, we have to look past this and remind ourselves that they don't understand and that, sadly, WE were chosen to fight this battle...not them....for reasons that we may never know. You are a strong person, Aly. You really are. I can tell by what you say and how you carry yourself. I know right now you are confused (which is completely understandable) and the side effects of the drugs have you down, but I PROMISE you, it will get so much better. Like Dru said, any guy worth keeping is not going to judge you based on your appearance. He is going to love you for you...I have found that out with my husband. He has been my light through all of this. In fact, when I want icecream, he goes and gets it! He smiles at me and says, "Roid rage?" To which, I say yes and eat my ice cream! He is one in a million and I thank God every day for putting him in my life to help me through this. Some people are put with us for reasons that we don't know until we come across difficult situations such as the one you are in now. I want to hug you and tell you to KEEP LIVING YOUR LIFE! DO NOT LET ITP RULE IT FOR YOU! Get out there! Be happy, Aly. ITP is a big pain in the ass, but that is it! Think about it...I'm sure you know others who are suffering from far, far, far worse. I am not undermeaning the severity of the illness or making it seem "not that bad." Because it can be...IF YOU LET IT. It is amazing that you are on 5mg of steroids every other day and your counts are staying so strong! That is an amazing, amazing sign that you are bouncing back! So many ITPers don't even respond to steroids! Bummer, if you think about it! You DO! You are lucky! I know you are feeling down and you have every right to vent...I vent on here all the time! We know how you feel and I wish I could reach through cyber space and give you a big hug and a kit kat bar right now! Cheer up, you have so much to be happy about!

Aly, if I wasn't so ashamed of a picture taken at my parent's 50th Anniversary 7 years ago, I'd post it here! But I was on the pred and looked like a person with no face. I hated the picture, but since it's my parents anniversary, I won't delete them.

Hang in there, it does get better!

When I was on pred I went from a size 9-10 to a 15-16 in a matter of a month or so. I took it off and more I now where a size 6. It can and will happen.


As for the exhaustion you may need to force yourself to do some exercise. Believe it or not exercise can actually make you more energized than you were!

PS: Vent all you want anytime Garenteed someone here has either been there or completely understands! if not most of us!

NatalieM, your reply put me in tears, but of relief, it's like you know exactly how I feel. And you are right, I should be happy my counts are doing good!

Winnifred, Congratulations on the weight loss! That is great!

Thanks everyone for your replies

Aly,

I promise you, once you are tapered off the steroids you will feel so much better! I was on them from dec-March and gained 9 pounds and had the moon face. However, one side of my face was actually more swollen than the other. The moon face went away pretty quickly. It took about 3 months to lose the weight, but it wasn't too hard, just eating a little better and exercising!

Vdeutsch85, thank you for your reply. It reassures me things will be okay. I have been off steroids for a week and a half now and couldn't be an happier about that.

Yay! Your moon face will disappear.

Hello everybody!

So it's been almost two years since i've posted anything and I just wanted to send out a friendly message and update.

I have continued to stay in remission since my last post on here. All the side effects from the prednisone are now gone. I have had normal counts ever since my steroid treatment and sometimes I even forget about ITP, but I have never forgotten everyone on this site who helped me when I was first diagnosed and through my treatment. I occasionally come back to this site but I had not posted anything because I lost my password and I just was able to recover my account. Anyway, just wanted to update and say once again how great this site is and most of all the beautiful people that belong to it.

Wishing everyone high platelets and good health!

-Aly

Great news, Aly! I always love happy stories. Thanks for the update.

Aly,

So great to hear you are doing well!