Hi Mare and Kalio1
Yes, I live in NJ and we sure have had some cold weather these last couple of weeks! This may be part of why I
I am in week 9/24~ 2b. I also have a bit of surgically implanted metal in by body ( thumb totally shattered while jumping a horse back 2001). T Plate & 8 screws & 1 large bolt thingy. Mine has been making itself known for the last 2 weeks. I am thinking if your screen name here equalls your home (NJ?) we have had some pretty cold days here recently. I rub Palmers Coccoa Butter into my surgical site & use one of those "turns off after 2 hours" heating pads wrapped around with an old elastic belt to hold it on comfortably. Spring warmth is just around the corner.
Mare
I'm sorry I am not very familiar with you and your wife but understand from that last post that your wife had her transplant 3 years ago and she has been on tx for 2.5 of those years?? I am floored! My husband is 15 months post tp and on our last visit to TP team we tried to talk them into putting him back on tx. They are waffling and we have not yet gotten their final answer but they do NOT want him to treat until/unless his liver enzymes start to climb. Even with him being a geno type 2, they do want to expose him to tx until biopsy, enzymes deem it necessary. I wonder why your wife is being treated so aggressively. Was the hep running rampant?
Mattie
I do so hope your wife can get stronger. I have read with compassion many of your posts of the past couple of weeks and cannot believe what your family and especially Eva has endured. I hope she gets stronger and stronger.
kathy
Just a follow up. Talked to my wife in calif. last night. She had to stop treatment after 2.5 years of Peg., Co-Peg., Rib. They want her to get stronger then start again. She is post-transplant 3 years. Good News Tho, she says all neuro. problems have cleared up in last 2 weeks. No more tingling, numbness, or leg pains. She concludes the drugs are the cause and when their out of her system she is much better. Hope the same happens for u. As everyone is so unique there is no absolutes with these issues. Bye
hey, boys can have boyfriends too! but i am one of you. in fact, i'm one of the MANY Debs in our group. i'm so happy to have found you guys--isn't it great to have other people care as much about riba rash and viral loads as you do?
I just read an article that comments on interferon as an immune system stimulant. So, in the huge amounts taken, that superstimulation must be triggering autoimmune conditions on predisposed people. But, why not in others? Especially in folks with familial hx of some conditions like gout, asthma, etc. What is at work?
lilmomma -- oh yes, I hear you. Kind of anxiety, body weirdness, highly emotional moments. I understand the self-concisousness too. It seems like in the beginning our bodies are reacting to the "assault" and I personally went inward. Seems like there was a barrier between me and others - that's where this forum became invaluable. I personally have not told very many people I have hep C and am treating, but I don't care how many people you tell - you just feel apart - alone anyway. I truly am grateful for this little nest of ours here.
harty -- I don't really have the numbness, thank goodness, and did not get the pain in my scalp. I had unreal itching. Was constantly scratching my head (reminded me of sitting in Trig class in high school scratching my head (mom bot the cheapest of shampoos)and making little piles of dandruff on my papers-crips was I a nerd!). Anyhoo the breakage is the start. I do suggest going to a salon - Penneys is good - and buying the Nioxin starter kit. Lasts about a month and by that time you will know if it is going to help.
kalio - when is that last riba? I have riba-release envy, I think. I am so happy for you. it has been a long long road
goof -- you too - what 2 more weeks to go or so? hooray
algernon - you had me fooled - thought you had a johnson. I think it was because you posted you were a professor (guess I am still stuck with some of those stupid role model issues). Glad to knwo you are one of "us" - love your wit and
can-do ---- ants-in-your-pants--- isn't that a game?
honey -- if you hit this thread, just wanted to say I will come for dinner any time --- pizza and cupcakes -- I like your style.
rockerforlife -- love ya guy, but I will eat with honey.
nygal -- has the thinning lessened yet? Maybe you should go to a stylist and let him/her give you a new do. I go today, and my cutter does my hair differently -- she has experience with thinning hair -- but if someone comments on my hair, I always just say - oh she cut it too short this time (when in reality it is just laying mighty flat to my head) and about the syringes -- what are you using? what is a 1 --you certainly don't need 3 cc syringes. Last week I got new ones from the pharmacist. They didn't have the 28ga 1/2" allergy needles I used before, but had 29ga (even smaller)1cc syringes (needles do not detach). THey only cost a quarter each. The 28ga were Becton Dickenson and called B-D Allergy Syringe Single Use 1cc syringe.
cuteus -- these autoimmune issues are really making me take pause. I think I am going to have to do a lot more reading on them. It certainly does appear that there are many autoimmune issues that follow after tx.
NYgirl: I am confused ALL of the time and need Goofy to tell me where I am
My best guess would be that you're at work right now. Why not have a look down at your shoes? They may have the answer you seek....
BTW - Today is Tuesday. It's winter. George Bush is President. This is a new one. He's the son of the old one.
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FLguy: Your extremities are those parts of your body that extend from the main part of your body, that is, your arms and legs, fingers and toes.
Hmmmm.... The wife was hoping another extremity might be a candidate for numbing.
I'm familiar with those feelings. I took on little, non-exerting, stuff around the house that were ignored for a long time. Got into the kids' rooms and cleared out the cracks and crevicies where stuff just goes. Found mementos from years past, photos, game peices, earings, dirty socks. It kept me busy, mind off other stuff and caused me to remember some of the cute things of their earlier years. Try it while listening to old favorite music you haven't heard in a while.
This was excerpted from janis - in the Symptoms section..."Glossitis: Glossitis is a sore tongue. If you have glossitis, your tongue will be redder than usual and will be sensitive to salty and sour foods, and carbonated beverages." No mention of Ben&Jerry or Hostess Cupcakes.
your not smoking any good buds our you. if so make sure you clean all them seeds out. Could be the problem. Oh by the way you grow your own?
AH I know! Breakage was the first thing that happened and I have never SEEN so many split ends as a result - I have become best friends with my little pair of scissors! I got so mad at it one day that I chopped off like 4 - 6 inches then I hated myself even more!
Between the skeletal body the pasty skin and the hair problem ugh yuck gross! I know that it seems like it's being stupid complainning about such things but...it's NOT.
Never EVER feel guilty about something like that. It's something we can ALL relate to you know. At first it's like OK i'll put makeup on and get dressed and I'll be fine but after 20 weeks you take a look in the mirror and go WHAT who is THAT?
Vanity is someone who looks in the mirror and goes oh God I am so lovely look at me! People like us who just wish we looked BETTER from our disease......that's just simplly being RATIONAL don't you think? :)
PS Friole turned me on to a special shampoo for people like us - Nioxin. I don't nkow if you need it because your hair isn't falling out - but it's something to remember!
<i>Vanity is someone who looks in the mirror</i>
Not to 'split hairs', but I think the Vanity is the thing the mirror sits *on*.
I don't pee in no fan, thats like pissing in the wind.
ny girl, uh johnson? Ok so what do you call yours?
maybe you have ants in your pants. not sure though could be wrong
At first it's like OK i'll put makeup on and get dressed and I'll be fine but after 20 weeks you take a look in the mirror and go WHAT who is THAT?
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Well duh, why wait 20 weeks to look in the mirror, maybe if you did right after all that you'd know.
I don't get into hair things after my wife lost all hers first year of treatment. But its grown back despite continued tx. A lot more gray and white with the aubourn, but its back. Looks cute too cut short! The other problems tingling/numbness could as cuteus sugg. be neuro. related. My wife as well as myself have Neuropathy. I've had it over 15 years now due to spinal injuries. And the most common needle/electrical stimulation tests miss many forms of Neurop. Check out www.neuropathy.org. They have a very informative newsletter mailed out free. Bye
I appreciate you responding,.....but I gotta admit, the last thing I want to do,...is anything.
I have been up since 4 this morning, worked my butt off all day, ran out of work at 2:30 couldnt stand the sensation any longer. I have an all day meeting tomorrow (8-5) so there will be no running. I am just so darn jumpy!!!!!!!!!!!!!
lilmoma
Im glad to see your not involved in all this stuff today. Still think its those ants in your pants making you jumpy though.
Whoa. I just had that numbness, tingling thing in my little toes a few days ago. But if telling me doctor means I might have something called an "electrical stimulation" test, I'm keeping this one a secret.
NYG: I always wondered why my boyfriend seemed nervous about that oscillating fan next to my bed.
I had the numbness in arms & legs. mine was caused by B12 dificiency. Been getting B12 shots monthly, helped a lot I haven't notice them doing it lately. Mine was bad couldn't even feel my feet when I first got out of bed some mornings.
Hair has not started to actully fall out, but seems to be "breaking off" sporadically. Swore I wouldn't complain about hair loss since it seemed so silly compared to the other sides............but I changed my mind. I'm complaining. It looks terrible.....especially with this pastey white skin.