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New to ITP 11 years 10 months ago #1124

  • SamIAm
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Hello all! My name is Samantha, and I'm 26. I was diagnosed in October, after I went to the ER with a platelet count of 1,000. Since then I've been in the hospital 3 times and had 5 transfusions. I'm currently on NPlate, which (usually) works. My counts go way up, and then way down. A few weeks ago I was at 400,000, and then yesterday I went to the hospital with a count of 3,000 for another transfusion.

Basically, I'm looking for some people who would like to talk back and forth for support, mainly by email. I've discovered that, although I have not been sick for long, my own friends are busy with their own lives and have stopped being overly concerned. It's also difficult to connect with people who don't know exactly what you're going through. Even when people are sympathetic to me, I am dissatisfied with their meager advice. I feel that I would benefit greatly from making some new friends!

I feel like a loser sometimes, because even when my counts are high I'm not confident enough to go out and enjoy life. Most days, I make little to no effort towards my appearance because I feel that it doesn't matter anymore. I've stopped going out on the weekends because I'm afraid to drink, and I get irritated easily with people who complain about mundane things. I want to slap them, and tell them my story to remind them how lucky they are. My patience is running low!

If there's anyone who would like to be my modern-day pen pal, please contact me!

Love and platelets to all!

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Re: New to ITP 11 years 10 months ago #1125

  • farida
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Re: New to ITP 11 years 10 months ago #1126

  • farida
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i live in los angeles , where do you live?

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Re: New to ITP 11 years 10 months ago #1127

  • Angel85
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  • What we have is now & right now we have each other
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Hi Samantha,

I have been dealing with ITP for almost all my life. I was diagnosed with it when i was about 5 or 6 years old, i'm just about to start Nplate, hopefully this friday if my platelets are low enough lol. They have to be under 30 for me to start it and last week they were 36. I'd be happy to chat to you through email, my email address is in my profile under the about me section if you want to send me an email.
You've gotta' dance like there's nobody watching,
Love like you'll never be hurt,
Sing like there's nobody listening,
And live like it's heaven on earth.


Lauren

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Re:New to ITP 11 years 10 months ago #1131

  • tofer
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So Sam sorry to hear that you are having such a hard time. Your last paragraph there sounds like you might be getting depressed. You might try finding a release for your anger. We can all relate to feeling angry about losing time to this very annoying condition. But it seriously should not stop you from caring how you look or going out.

Long as you are avoiding juggling chainsaws or large knives going out might be helpful to your well being. If you have the energy to go i would be out having a good time.
Gotta live each day to its fullest. Seriously while this ITP thing is time consuming & very annoying if you let it take over your life it will.

Many of us here have multiple conditions and still live pretty full lives... B)

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Re:New to ITP 11 years 10 months ago #1134

  • Joya
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Hi Samantha,

My name is Joya and I am 21 years old and I live in Amsterdam. I've been diagnosed almost 2 months ago with ITP. I feel exaclty how you do! Friends and familiy just don't understand. Every day they keep on asking How are you today? I feel like shit.. and then ten minutes later when I look upset they ask What's wrong? And I'm like :blink: I feel like shit.. didn't i just tell you that?!

I would love to mail with you, share information, stories etc. And maybe chat or something.

My e-mail adres is joya@live.nl.

I'd love to hear from you!

Xx
Joya

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Re:New to ITP 11 years 10 months ago #1137

  • Kim
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  • Diagnosed with ITP in 1983, lupus in 1990, APS in 2001, vasculitis in 2006. Current platelet count 148. In 2007 I had a stem cell transplant for autoimmune disease and currently ITP and APS remission, with a reduction in lupus activity.
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Samantha, Joya,
Get a grip...it's ITP, it's annoying, it interferes with life sometimes, but it's not the end of the world. As tofer said, as long as you're not juggling chainsaws, you're not a sword swallower, you'll live a full life. That is, as long as you let yourself life a full life.

I was diagnosed with ITP at 23 and am now 50. Diagnosed with lupus 20 years ago and a lupus related clotting disorder 10 years ago. I was clotting and bleeding from ITP at the same time. Trust me, I have never let it interfere with my enjoyment of life. Has it interfered with my life? Absolutely. Has it changed me abilities to experience some things I used to experience? Absolutely, but I still get out, I still enjoy friends and a drink form time to time. I travel...just got back from China and am planning the next adventure. There are so many things to do on this planet, I refuse to let one limitation ruin my life, because I can always find something else that is enjoyable. You can always enjoy the company of a good friend, or a good book.

It's hard at first, just grab hold of life and hang on. When initially diagnosed with a chronic illness, it feels as if you've lost control. That feeling should subside a bit, but you'll need to participate in life or you'll risk loosing out completely. So, snap out of it, or if that's not possible, take one step at a time and get out, go to the beauty shop, get a pedicure and start doing the things you did before ITP. You're the same person, just with ITP.


Kim

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Re:New to ITP 11 years 10 months ago #1138

  • Joya
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Kim,

I understand that it is not the end of the world and that I'm not dying.. But at the moment ITP is making my life impossible.. I just started a new study Lifestyle and Health.. It's a sport studie so I sport 4 days a week.. Next to that I'm a professional dancer and atm I can't do anything.. And even if my counts are ok I don't feel confidend enough to sport becouse in between my appointments at the hospital my counts could drop.. And I don't always know when my counts are low.. I'm in a riskfull invorment every day.. And atm ITP is making me depressed.. Apart from the fact that I'm getting fatter every day, got sits and acne all over my body from the medication.. I just feel like my body is not mine anymore..

Joya

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Re:New to ITP 11 years 10 months ago #1141

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Joya:

How often are you having counts done? Maybe more frequent CBC's would help. If you felt more confident that your counts were okay, you could go ahead with your activities. Many of us just have CBC's without appointments for monitoring purposes.

Believe me, ITP hit us all in the middle of an important life. It wasn't easy for anyone. But honestly, you can't let it stop you. Steroids will make you feel horrible and we all struggled with that. That does fade as time goes on but in the meantime, you just have to keep plugging away the best you can. I remember many times feeling like I just couldn't keep going, but when the alarm rang the next morning, I was up and at it again.

Things will get better. Just take one day at a time.

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Re:New to ITP 11 years 10 months ago #1152

  • SamIAm
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Joya- I'll be emailing you!
To everyone else- I appreciate the (mostly) kind words. I think maybe I came off sounding a bit like a whiner, which I am not. Everyone has problems, medical or otherwise, besides ITP, and I'm no different. This is not the only medical condition I am dealing with. In addition, some people handle crisis better than others. I am merely trying to connect with others in an attempt to deal. I think we can all agree that ITP has changed us in one way or another.

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Re:New to ITP 11 years 10 months ago #1157

  • Angel85
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I don't think you were neccessarily whinging, but if you want to whinge, here is the best place to do it cause we understand what your going through and people were just suggesting what you could do to try to change your situation for the better. It is hard to deal with at first, but you just have to try not to let it control your life. I still do all the same things i always have, i just know when my platelets are low, i need to be a bit more careful with myself.

I know your friends don't understand, but just some friendly advise as well, don't push them away just because they don't understand or don't appear to be sympathetic. My friends are my time away from all my medical issues where i can just be myself and not talk and worry about my medical problems. I love spending time with my friends because When i am with them, I forget I even have all these medical problems and for a while i can pretend i don't have any problems.

You need to realise that while Yes ITP is a serious condition, you don't have to stop living and enjoying your life because of it. It is not a death sentence. Most of us here on this board have had it for quite some time and we are all still here, life is too short to not enjoy yourself and have fun. Worrying and stressing all the time is not going to do you any good.
You've gotta' dance like there's nobody watching,
Love like you'll never be hurt,
Sing like there's nobody listening,
And live like it's heaven on earth.


Lauren

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Re:New to ITP 11 years 10 months ago #1168

  • barrelgal
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Hey Sam! I'm 26 as well and was diagnosed about a year and a half ago. I went through a stage at the beginning much like what you are going throughand I'm suprised that most of my friends still talk to me! but that's the wonderful thing about true friends. I retreated for a while, flaking out on invites to go out and do things etc then one day I just stopped. I realized that ITP wasn't the end of the world, drinking had never changed my counts, and I needed to LIVE! I still get down about it sometimes but I try to keep a positive attitude. Another strange thing, my counts actually went up a little when I changed my attitude, maybe that's the new treatment ;)

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Re:New to ITP 11 years 10 months ago #1182

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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I don't think it was anyones intention to sound mean or uncaring, and I hope I didn't sound that way. Sometimes it helps to have someone tell you to get it together. When I was first diagnosed, I was a mess too. I came here and had people tell me "you'll get used to it" and "it's not that bad". It did help to hear that because I realized if they can do it, so can I.

When I started to read more about people who didn't respond to any treatments at all, I sure changed my perspective. I did respond, even though it didn't always last, but I knew that I could get counts up with treatments. It wasn't pleasant and it was invading my life, but I knew I'd have few ITP complications and that was what was important. If you have to have something, at least it can be controlled and managed.

No one is belittling you; we've been in the same position. There is a lot of support here and I hope you stick around.

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Re:New to ITP 11 years 10 months ago #1194

  • tofer
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Ok guys maybe we did sound a bit harsh.... that really isnt what any of us intended. We just think that maybe you are not seeing thru the other side. We have all been where you are at least once. Maybe we all go there several times...around and around.

Hard as it is, you have to get up and get on with it. Your life only has so many days. You have to learn to live them to the fullest do everything you can today because tomorrow, well tomorrow you may not feel up to it. You will waste too much time...
I know you are young and it feels like this is sucking your life away... It will if you let it. Just don't let it.

Don't give up your dance or sport...reduce the risk are you all playing rugby or knife throwing? Joya are you taking steriods? that would for sure make your body feel foriegn to you. You should be able to dance... If your heart and body have the energy to do so DANCE. Your count shouldn't really slow that down. If dance is what makes you feel whole then you need to do that.

My counts have been between 29k & 40k for 10 years. There are months that go by and i totally forget about the whole ITP thing then there will be a bunch of brusies or bloody nose or pink in the sink when i brush my teeth, suddenly my heart races and i think CRUD its happneing again!!!! Now that feeling lasts a few seconds or a few minutes, use to be that he lasted days & weeks.

We are here to support you, to help you, to remind you that you will survive. Feel free to whine but remember that this condition is our reality too. So when we try to keep you honest, we are not really picking on you we are trying to help you see. You are going to need to remain mentally strong, because this ITP thing is annoying and time consuming and sucks. :P

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Re:New to ITP 11 years 10 months ago #1206

  • Joya
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Hey Tofer,

I was on steroids for the last three weeks.. (Dexamethason) and before that I was on it as well.. So for the last two months I haven't been able to dance.. My body just could not do it.. I danced untill 3 weeks ago when I had a break down.. Becouse I had a performance and I just could not give it my all.. I was standing on stage and my body just refuised to do what I wanted.. I did finish the performance and the people watching it probably didn't even notice anything but that was the last drop.. I just could'nt do it anymore.. So me and my coach decided it would be better for me to stop for a while untill I feel fit enough to start again.. And I already suffered from depression before I was diagnosed with ITP.. I lost my grandfather 2 weeks after the diagnose so it all has been a lot for me.. And my body.. At the moment I did start following the sports lessons at school again.. I'm not able to to follow the whole lessons since my body just refuses to keep up.. But it's a start..

Joya

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Re:New to ITP 11 years 10 months ago #1241

  • lili
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Hi Joya,

I've not taken dexamethasone, but I feel somewhat the same way on higher doses of prednison. I usually bike to work, but stop if my counts fall below 30. However, even after the prednisone has worked and my counts are normal, I'm usually not comfortable biking at higher doses. I wait until I've backed off on the pred.

Of course at those doses, I'm usually so whacked I shouldn't be doing anything... even walking. :S

It does get better and easier to deal with. :)

Lily

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Re:New to ITP 11 years 10 months ago #1252

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Another suggestion: Ask about different treatment options. If you are RH+, Win-rho might be good way to treat. It has far less side effects than the steroids.

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Re:New to ITP 11 years 10 months ago #1255

  • alisonp
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I seem to remember reading somewhere that you can't get Winrho in the EEC - certainly can't get it in the UK. I would be interested to find out otherwise though!!

Ali

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Re:New to ITP 11 years 10 months ago #1259

  • Joya
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Hey!

I've a doctors appointment next friday to see how my counts are doing.. Since I'm off meds for 2 weeks then.. I will talk to the hem. then about other treatment optionts.. Rituxan, WhinRO etc.. The doctor really wants me to try prednisone but I just don't want to.. I really really don't want prednisone.. So I'll discuss it with him next week.. Thank you all for the responses!

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Re:New to ITP 11 years 10 months ago #1289

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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You won't like Prednisone. In some ways it's worse than Dex because the side effects go on and on for weeks/months. Usually that is how long a person is on it, and you get the same side effects...weight gain, mood swings, acne, moon face, sleeplessness, muscle loss, etc.

If Win-Rho is not available, which is a shame, maybe Rituxan would be a next step. Discuss it with your doctor and see what he says.

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Re:New to ITP 11 years 10 months ago #1327

  • tofer
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I did terrible on pred. My body became totally foriegn to me not to mention the actual mental issues it caused. Not pretty. I kinda became psycotic... LOL that passed but it was not a fun few weeks for anyone.
Meditation or some form of relaxation is going to be necessary for you guys. Do what you can to keep your moods up even if its just stretching and barre work or what ever you can do that keeps your mind at peace.
You will need to try to keep your schedule as modified NORMAL as possible. Meaning try to do the things you used to do, if you cant do something that replaces your dance, soccer or what ever it is so that you may remain as close to sain as is possible in this situation. Dont allow yourself to stop everything go out with friends, play as much as you can and find a way to stay outside your head. <cuz it does get ugly in there if you let it>
Remember to read as much as you can about all this...

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Re:New to ITP 11 years 10 months ago #1362

  • sannyt
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Hi Samantha,

Sorry to hear your on the roller coaster ride of itp. I'm Sandy. My son Doug is 10 and has had itp for 9 years. His platelets will drop really low and then he is treated with ivig and they go up. He was hopitalized in 2009 with a count of 5,000. Given ivig and they went up. His next bout with itp was in nov. of 2009. His platelets dropped down to 28,000 but went up on there own. He goes every month for blood work. We just had him tested on friday and his counts were at 286,000.

I would love to chat with you. My email address is Jessiesmom0659@yahoo.com


Sandy
Sandy~~ mom to Doug.

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Re:New to ITP 11 years 10 months ago #1642

  • kahar
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Hi all,

I'm new here. I've had ITP for a very long time. I've had my ups and downs. However all the support from my parents and now my own family have helped me to go on with my life. To those who have just been diagnosed with ITP, hang on. Your life will change a bit but be sure to take it to the right course.

This forum sure does help all of us to understand and help each other.

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Re:New to ITP 11 years 10 months ago #1644

  • ddunn
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yes, this forum is great!

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Re:New to ITP 11 years 10 months ago #1650

  • AmeliaP
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Hello! Don't be afraid and don't worry! You need to have a better attitude and think
Positive! I am 69 years young! My first experience with ITP and low Platelets started the end of October 2008. I wasn't even aware of what I had. I was at work one day and my nose was bleeding like a post nasal drip all day. I went through 2 boxes of tissue. I went home that night to find a rash all over my legs and chest and black spots on my tongue. I thought I had allergies, so I went and got tested and found out I had NO allergies. I called my Internist. I went in to see her and she looked at me and called the Hematologist at the hospital. He said to send me right over. When I saw the Hematologist, he took a CBC test to check the Platelet count. My Platelets were under 10,000. He told me, I must have a guardian angel on my shoulder as for this low I could have had a stroke or bled to death. Shortly after the test, I was admitted and given an IV hemmaglobin to increase the platelets. Then I was put on 40 MG of Prednisone. Prednisone is a steroid. It does have its side effects. I found that for me, it put some weight on me, but that is all. I was told alot of women and men get this blood disorder later in life. My only down fall was that being of Italian decent, I inherited the Mediterrean Blood disorded called Thallessiam(Enemia). This is genetic. I also had a bone Marrow test and it came back negative. I have been dealing with this disorder since 2008. I am in Florida now for the winter months. My Hematologist in the north said he wanted me to be tested while I was down here so I go every 2 to 3 weeks.. I have been trying to take more vitamins and I take OMEGA3(it helps the Immune system)Eat more Antioxidant foods. Also, this disorder they don't know what causes it in people. As I have read and found this site, I am AMAZED to see all types of people from children to Teenagers and us Adults with it. I can tell you my platelets are at 114,000 and 2 weeks ago they were at 61,000. I just went back on Prednisone 2 weeks ago. So you see, it will work. Your Hematologist will adjust the Prednisone. There are other medications out there that will increase Platelets. As you know drugs are very costly! Prednisone is inexpensive and it works. You need to have a better outlook and have some High Hopes. There are alot of people and alot of stories of what ITP and low platelets are doing to us. Keep the Faith. Prayers are a good start! The Lord is with you! Keep the Faith.
Amelia M Petre

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Re:New to ITP 11 years 10 months ago #1676

  • jess
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Sam,
I am grateful towards those who bring positive energy to this forum.... it's why we all come here! I wish I could share with the forum as much positive energy as I download from it. I think for those of us who have yet to find a treatment option that continues to work or one that works well for us, it becomes even more of a challenge. I was diagnosed just under a year ago and also have been struggling most of that time with less than 10k platelets. I have found it difficult to accept support from people because I feel like they don't know how I feel, I understand that probably isn't the best thing - and I'm lucky they continue to be supportive and offer their love to me. At any rate, if you're still looking for a modern day pen pal feel free to email me, share your story.

Take care and hang in there.
Jess

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