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Posted December 9, 2006
Exactly what I needed!
How many have tried to get life insursnce AFTER being diagnosed? Did you run into any problems?
Your sleep pattern sounds EXACTLY like mine. I'm sure I have at least mild apnea because I sometimes wake myself up with a gasp for air.
I do also get fatigued but not as often and not as severe since I started Cellcept in Feb. I used to get the 'brick wall fatigue' where I was just totally useless. Now those days are fewer thank goodness.
I can differentiate between my fatigue and my lack of sleep tiredness now. When I'm fatigued, I also feel like someone beat me with a baseball bat.
When I'm tired, I could close my eyes and be asleep in 30 seconds. I have little ones at home so I can't just take a nap whenever I want to. One day I sat down while the kids were watching cartoons and I didn't even remember closing my eyes but my son woke me up about 20 minutes later out of a deep sleep. That's kinda scary. I didn't even KNOW I was THAT tired! (Now THAT'S tired!)
Keep us posted on your sleepover.
Posted December 7, 2006
I don't remember injuring it.
I did do some light work in the yard and re organize the shed yesterday.
My index and middle finger on the same hand (right of course) are also turning purple more frequently and unprovoked by cold.
I've heard of tendon clicks. What are these and do they hurt?
My wrist feels like its sort of stuck. Just hurts to move it. Operating at about 50%.
I'll try my brace from years ago and see if that will help with the pain today.
Have a doctor appt with general practitioner for my painful calves on the 13th. I'll tough this out til then and tell him about it.
Thanks for listenin'
Posted December 3, 2006
Oh I can so sympathize with you! Some days I have to change all my plans just to stay close to the bathroom. It's the pits.
What are you taking for your Raynaud's?
I don't have any experience with Plaquenil. I can't seem to convince my doctors that I need it. I don't know what's up with that...?
Anyway, hope you are feeling better soon!
Just my own off beat humor - probably only funny to me........
How I want to be remembered:
Oh, she was so strong and so brave. She had to live with so much pain - physically and emotionally and no one ever heard her complain about anything. She was a real trooper. I only wish I knew how much she was suffering so I could have been there for her....
How I will actually be remembered:
Oh, she was such a whiner. The only time I ever heard her speak, she was complaining about something. She never did get her stuff together. I always wanted to hide when I saw her coming.
How do you want to be remembered? How do you think you will be remembered?
Mine was tongue - in - cheek. Sometimes I just can't be serious. Then again, I'm sure of certain people I know who wouldn't laugh at that....the ones I'm always venting to.... :rolleyes:
Thank you for this post and all the good replies. I have been experiencing the same and wondering if I should ask rheumatologist for a referral to a PT. I am wondering no more. I'm calling her first thing Monday. Thank you all again.
Posted November 28, 2006
Raynaud's Diagnosis, Nailfold Capillaroscopy
Congratulations Pam! :)
I'm so sorry.
I'll keep you in my thoughts.
Yes! Yes! Yes!
Cobwebs! I used to be constantly pulling imaginary cobwebs off my face. At times it was infuriating.
Now I know it was my face tightening.
I also felt spiders crawling in my hair.
Sometimes I thought this must be what heroin withdrawls are like! :o
Well, well, well, once again it's not just me!
I felt like a total idiot telling my doctor about this symptom early on. It was hard to describe and so I just said I feel very tender - like a bruise wherever I'm touched.
I'm feeling that symptom again in full force right now too. My 4 year old likes to give love pats and when he does that to me it feels like I've been shot with a bb gun. :blink:
My calves have been hurting - like they are falling asleep. It starts out like a deep ache then turns into a tingling and stinging. They only hurt when I'm sitting down or laying down (at rest) They kept me from falling asleep lastninght.
I mentioned this to both my general practitioner and rheumatologist about 6 months ago and neither of them had much to say about it other than its probably not blood clots. It has definately gotten worse in the last 6 months.
I've also noticed a milder version of the same thing starting in my forearms.
Can anybody shed some light for me as to what this COULD be? I'm kinda worried.
I'm snowed in today and don't know for how long, so don't know when I could get to doctor.
Oh yea, another symptom - I feel 'paper cuts' on the backs of my hands and my forearms......weird.
Posted November 23, 2006
Happy Thanksgiving All,
I am thankful for my kids, my home, my health - it could be worse ;)
and all of you here. Thanks for your support!
Posted November 21, 2006
Hazeltree, Thank you for the graphic detail. I wanted to hear it. I cringed when I read the part of you on your bathroom floor. You poor thing!
Tell me, why is a salt water bath good for it? I got your PM and I will try that if/when it comes to that.
Today it is still tender and the skin is tight. I'm starting to remember how it was 3 years ago when this finger first acted up. My right hand was virtually useless. I had to beg my husband to do the dishes and bribe my kids to pick up the house.
Of course this couldn't be on my LEFT hand! :angry:
I remember it took forever to feel better and when it finally scabbed over, I was still picking what I later found out was calcium out of it forever. (I thought it was just REALLY hard skin from the scab) It did leave a hole with hard skin around it. I haven't been able to pick anything out of it for over a year.
I also remember my doctor sending me to a sports medicine surgeon who wanted to cut the tip of my finger off! They didn't even know WHAT was wrong!
Off the subject: I STILL get angry at my old doctor for not putting 2 and 2 together, with all the symptoms I kept going to him with - if he knew ANYTHING at all about Scleroderma, he should have sent me to a rheumatologist back in 2002! CUT THE TIP OF MY FINGER OFF! - for pete's sake :angry: NOT YET!
I'd better go before I go off about him again. That's a whole 'nother post.
I got a big owie on my finger. :(
It's the same finger that I have had the perma scab on. I haven't had a problem with this finger in almost 3 years and this came on rather suddenly this afternoon.
It hurts to move it or touch it.
I've seen the photos of people's finger ulcers and I am SO NOT looking forward to that!
I'm hoping this is not that but at the same time trying to brace myself.
I'm also wondering if this came on because I ran out of Cellcept and had to take the 2nd 1/2 of my morning dose this afternoon after I could get to the pharmacy.
Or could it be that, in conjunction with this cold I've caught and the flu shot I got last week?
Any opinions or advice? How do I care for my finger. Should I call rheumatologist?
Oh, so sorry about your painful flare bookworm! :o Glad you are feeling better. :)
Here's the rest of my flu shot story......
I've been stiffer and achey-er than usual and I can add some joint pain to the list as well which is rare for me.
BUT the scary thing is my right middle finger from the first knuckle to the tip is VERY tender, painful and swollen. It hurts to move it or touch it. It came on rather suddenly this afternoon. I didn't injure it. I'm wondering if the flu shot started it or maybe because I ran out of Cellcept and had to take the 2nd 1/2 of my morning dose this afternoon after I went to the pharmacy.
I'm also getting another UTI that I'm not sure will wait until tomorrow afternoon when I can get to the doctor's office. It's getting quite painful as well.
JUST what I needed right before my son's outpatient surgery on Wed. and the Thanksgiving dinner I'm hosting for out of town relatives.
Posted November 20, 2006
I tried it and had pretty bad nausea and dizziness.
I was prescribed 2000mg Cellcept immediately after my diagnosis in Jan of this year due to my lung involvement.
I only had some very mild, very brief, sharp stomach pain the first two days. It felt like little needles poking me in the stomach and only lasted about 5 minutes each time.
I really have no idea how well it has been 'controlling' my progression. I mean, how WOULD you know if it's doing any good? Maybe without Cellcept, I would be at the same place - do you know what I mean?
My PFTs have been alright except for my diffusion rate which has gone from 70% to 67% but that could be attributed to diferent machine, different tech person...
I can say that I noticed a decrease in my muscle pain and fatigue after going on Cellcept. Not that its gone mind you, just decreased.
Well that's all I can think to say about it except that it's EXPENSIVE if you don't have decent insurance! Like $700.00 for 100 at 500mg. Ad for me, $170 after insurance. :angry: ANd NO generic of course :angry: :angry:
Thanks for the replies girls.
I am going to try the saline for sure.
I love my preschool and the kids so I was only kidding about giving it up.
I will work on that reminder for parents using the sound advice you gave me.
I do have a clause in my handbook that says if a child gets sick at school I will call parents to come get him or her and I had to do that earlier in the year.
I just hope my kids' parents will be understanding.
Posted November 19, 2006
I am a childcare provider and I have a preschool out of my home. I have been very specific in my preschool handbook about NOT bringing children to school sick.
I will tolerate a runny nose as long as its running clear - no green mucuos- because some kids have allergies and have a constant sniffle but I've had parents bring their kids here with a nasty loose cough.
I am fanatical about hand washing here and I disinfect all surfaces and door knobs before and after kids are here. I teach kids to cough into their elbow rather than their hands and I have them wash their hands after they blow their noses. I even spray disinfectant into the air after sick kids leave here.
BUT my kids and I have STILL gotten sick. Here I sit with a sore throat and a stuffy head. It makes me so mad not only because I'm on immunosuppressant medication, but because when I'm sick I lose income. ARG! :angry: Just as I don't want sick kids here, I can't have kids come here when I'm sick, even if I feel up to teaching. That would be hypocritical and wrong.
I realize that anyone can catch a germ from anywhere and that my kids can catch stuff from other kids at their schools but it just makes me mad when I do all I CAN do to keep us healthy and then it's all for naught.
Can anyone help me compose a friendly reminder to parents to keep their kids home when they are sick?
Should I or should I not mention my compromised immune system? If I do mention it, how do I do that without having to go into great detail? I'm afraid any mention of my health issues will alarm parents if they don't have all the details.
Even if they do have all the details, they may not understand. I'm afraid some parents may not want to bring their children here and I live in a small gossipy town so it could ruin my business.....help?!
Maybe I ought to just give it up and sell stuff online????? :unsure:
Well I went and got my flu shot like a good girl.
This could be coincidence but after doing really well for about 2 months, the day after my flu shot I woke up with really puffy hands, couldn't make a fist and the skin at the base of my nails started cracking and bleeding. (How can such a TINY split hurt so bad?!)
They haven't returned to what's 'normal' for me since.
I guess I can put up with it as long as I don't get the flu!
I have a preschool in my home 2 days a week and I swear must wash my hands 40 times a day which is rough on them. I finally got smart and bought a soft soap with moisturizing lotion. I also keep hand lotion next to the sink.
This is a good topic with great replies. Thanks for starting it.
I used to have some bag balm but have since forgotten about it. Thanks for the reminder! I will go get some.
SOooooooo did you meet Dr. Dreamy? :D
I have been known to have the occasional margurita or glass of wine or two. I haven't had any problems with that since being on Cellcept. I don't remember reading anything written on the warnings about mixing alcohol with Cellcept.
I used to have a good time in my 20's. Since I had kids I rarely drink and now one glass of wine will suit me fine.
Can't wait to hear more about your date!
Posted November 18, 2006
I'm confused now. I thought blood thinners were good for preventing blood clots? Why would a doctor say to not take them?