Sorry Sandi, im the UK Julia not Julia oneup :laugh:

I watched as much of it as possible, it was great! I loved Simon Aaman the Swiss ski jumper, the Ice Hockey (agree with Cindy) the USA hockey team as i expect they were very dissapointed to loose the Gold but the best team won in the end and what is so bad about winning the Silver & saying thanks.
I loved the Ski cross freestyle! did anyone see that? The crashes! Wow!
Julia

wow! when liams platelets are down he ALWAYS complains of sore bones aching muscles and general tiredness,his heamo told us that this is not consistent with itp,but having read your post im glad as i dont think im imagining things anymore thankou and goodluck, jenny :

hi ALI,there is always someone with more problems than us,this is true,but at the end of the day its all relative and what effects and hurts our children does the same to us,i know exactly how you feel . the heamo asked me last week if i was over it yet! i said im past that,now i just get angry,frustrated and all the rest,liam is not 5 yet so at the moment he doesnt get too frustrated,im sure when its time for him to want to play a contact sport he too will get frustrated. from what ive been reading in the past few weeks you seem to be doing an amazing job.keep you chin up,we are all there with you jenny

Hi,

My visit to hospital today, revealed that my count has dropped to 15, which I was sure of due to overwhelming fatique, platelet headaches and blood blisters.

The plan is to increase the dose of eltrombopag/promacta tomorrow if count is still low, I am back to having the blood lady come to me at home, until count is increasing and stabilised.

I am so tired, and having not long had surgery, and the infection, and hospital appointments just about every day has left me with no energy at all. :S

Kim wrote:

I just had to respond to see what I am.... a Fresh, a Junior and when do you get to be an expert? I want that title.

I think my title changed to expert when i got to 80 posts

You're telling me! I'm so happy to have 45K!! I even offered to sign a waiver at the dentist because I've never had any sort of bleeding problems - and usually only have 30K - I bruise easily, but not even THAT badly. He didn't feel comfortable doing work, I guess he's never had a patient with ITP before. I am so frustrated with the whole situation. I have a letter from my Dr. stating that they are not to do ANY dental work if my counts are under 50K. Also, about painkillers, I've always been told to avoid them, if possible because most of them thin blood, so they can cause bleeding - I've always operated on that premise.... I thought that was pretty normal, until reading here....Is it that hemos in Canada have different protocols, perhaps? ARRRRGhhhh! (extreme exasperation!). Again, thank you for feedback.

I have never heard about anesthetics affecting the number of platelets. There is certainly no evidence that dental anesthetics have had any effects on MY platelets.

Also, I've never seen any connection between pain killers and platelet numbers, but I admit I am very limited in what pain killers I can tolerate--Tylenol and Ultram (Tramadol).

Sorry you're having to undergo all this stress. If everyone--your hema, your dentist, and you--could only relax a little. Most of us think 45K would be a lovely number of platelets!

Karen R

I guess, according to the hemo, the problem is the anesthetic, not the bleeding itself. I'm not sure (we don't communicate well, I feel..) but I think the fear is that the freezing injections will perhaps drop my platelets further? Or that I will bleed from the injection site (which is ridiculous considering I was poked 3X yesterday to get blood from me and 3X to get the frigging IV line in....have 2 inch x 4 inch bruise on forearm from that!)?? I'm going to start looking for a new Dr. tomorrow....I think it's necessary to get a second opinion...I just really need to get this dental work done. It's so stupid because I don't want to take any pain killers for fear of dropping my counts, in case I manage to find a hema on my own who will tell the dentist to go ahead, but my toothache is getting worse and worse...I feel like I'm trying to herd caffinated kittens. Thanks for the dental info, friends. It's helpful to talk to people who know what you're going through...I appreciate it.

Thanks for pointing that out Sandi. I worry one day my treatments will suddenly stop working but what good is worrying about the unknown I guess.

I have had IVIG twice when my platelets needed to be upped for surgery, and once when I came off Prednisolone prior to Retuximab it works very quickly raising my platelets from about 15 to 143 in 48 hours, no side effects after the infusion but I have to have antihistamine because of shivers and difficulty breathing during the infusion.

The effects lasted about 6 weeks.

Heather

I used All Clear Insurance just google it, I went to Turkey two years ago. The cost was a little more but the cover was better it cost around £100 for 5 people.

Heather

Absolutely not....just don't want to totally freak out new people right off the bat. So, maybe we just wanted to make sure they knew it was unconfirmed ITP and ITP doesn't generally cause death.

Looks like we're all unhappy with being labeled ha ha ha... like our opinon should count more if we post replies to everything, or if our platelets are lower, or if we've had ITP for longer...

Great...that's probably just as good, or better then the PM. Thanks for pointing that out, because I wasn't sure there was anyway to contact members.

I also notice on the bottom of post reply page that you can attach files or pictures. That's cool, because occasionally I have a file and have no way of showing to members. I guess we won't have to upload pictures to a place like photobucket either and can just upload them directly to the message. Very cool! Has anyone tried it yet? Is it as easy it it seems?

thank you all for your replies I think by reading more true-life stories I feel more confident in dealing with whatever happens.

Son of a gun...I didn't even realize I was a senior. Great...50 and now a senior poster too. I'm going to have to post more, so I can get past the senior level and onto the expert. What's after expert?

I just had to respond to see what I am.... a Fresh, a Junior and when do you get to be an expert? I want that title.

What really frustrates me about this new forum is it's lack of usability on my iphone. I was able to easily log in and read current posts in the old forum. This form, it takes me forever to log in, and then it's very hard to read the posts. It's too bad that mobile wasn't taken into consideration - especially since new is supposed to be "improved."

I did a great deal of reading of the old forums on my iphone, both when I was in the hospital and out - and it's frustrating to not still be able to do so easily. I definitely visit here less, for that reason alone.

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

I'm in Houston also. work downtown and live in the Meyerland area.

I think 75% of the dutch population where glued to their tv during the whole Sven Kramer drama.. I'll admit.. I had to cry.. If it's the medicine or if I'm just an emotional weirdo but it made me cry..

I never really watched the Olympics but this year I watched almost everything!! I thought it was great!!

Sandie, any news on Steve?

It would be too un-Canadian of me not to watch the Olympics right here in my own country! Yes, it would have been nice to be there in person, but I saw so much more here at home. I wasn't totally happy with the coverage, tho, too much chatter and not enough sports. Canada broke 2 records with these games; the most Gold medals won by any home country and I think the most medals of any games for us. But I will admit, I'm glad to have regular tv back!

Congrats to the US for their 36 medals!

I was very disappointed not to see the US men's hockey team say thank you for their Silver medals. No offense meant here, guys! Just an observation. When the Women got their medals, just about everyone of them said thank you.