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Everything posted by KarenL

  1. My two cents, I love wine too, and a glass or two, (or three) seems ok. I'm not on anti-depressants or any meds that interact with alcohol. I have noticed that my sleepiness goes through the roof when I drink. Most nights I fall asleep on the couch if I don't take a nap after work. Alcohol makes it so much worse! Good luck, take care Karen
  2. Hi Susie, Ouch! I go to a chiropractor for almost everything. For my shoulder pain she uses an ultrasound machine, it's wonderful. Have you tried accupuncture? Good luck, Karen
  3. Hi Tru, One thing you should definitely look into is surgery induced lymphadema. Whenever we have surgery we are at risk for this misunderstood problem. The lymphatic system is much ignored, but it is right under the skin and when disrupted can cause a build up of fluid and lymph. Lymph is the stuff that rids our body of toxins. You can google lymphadema and see what you think. I unfortunately know a lot about it. You may need an alternative doctor to notice it, my regular doctors just said, oh well you have big legs! In your case though they may be able to get you settled down quickly. Good luck, Karen
  4. I sometimes feel like I'm drugged, I drop off so easily, while watching TV, reading, sometimes while driving I have to pull over. I started taking a sublingual B-12 and it's helped a bit. Another scary thought, but everyone should keep it in mind is coronary artery disease. For women especially, one of the first symptoms of a blockage is severe tiredness. The month before my first heart attack, I slept like crazy. It happened again and again. (I've had three and the doctors think my arteries are compromised in part because of the scleroderma) My cholesterol is low, I'm on plavix and aspirin and yet I get blockages. Just be aware is what I'm saying, everyone was shocked that my problem was so serious. Karen
  5. I had a thread about this about 3 weeks ago, go back in the archives and see. also there's a whole page on it in the info section..I have both too, and more...
  6. Have you asked about lymphadema? It can be greatly helped with MLD. manual Lymph drainage. It's a common side effect of surgery.
  7. wow, thanks everyone, I have tears in my eyes. It's so comforting to know I'm not crazy, and more importantly, not alone. I will keep trying and will definitely get one of those wedge pillows! ;) Thanks again, keep the ideas rolling in friends! Karen :0
  8. Hi All, Lately it seems that my desire has taken a severe nosedive. Granted, I'm peri-menopausal as well, but I think the constant pains of sclero, fibro and arthritis are more to blame. I love my husband and we are both getting frustrated. We had a long talk and he's so understanding. He is afraid of hurting me, and he truly understands my tiredness and pain. Every time we try, it ends up kinda sad, because of all my issues. My knees hurt, my hips, my back, and shoulders. We've tried all kinds of positions, lubricants, etc. Once we get going, it's usually ok, but nothing like it used to be. Is anyone else experiencing this? Could meds be to blame? What do you do to help yourself and your partner? Is my desire waning because I'm afraid it's going to hurt so subconsciously I don't even want to get in the mood? I find a good book and my heated blanket seem much more appealing nowadays! I hope no one is offended or shy, it seems we can discuss anything here, I hope it's ok. Thanks in advance, Karen Scleroderma, raynaud's, barrett's esphogus, resolved Ulcerative colitis, (colectomy) Fibromyalgia, arthritis, osteoporosis,
  9. Yup, me too...really really bad. And every time I go in somewhere they always say "we're the best, don't worry" Ha, next thing I know they are puzzled. My arm veins are so freakin scarred, the last time I went to the hospital having a heart attack, it took 12 IV attempts. They even tried in my neck and thumb!! Finally they put in a central line foe the duration of that visit. Have them use the baby blue butterfly, NOTHING else. Even when I was having a catheterization and they were supposed to use a 22 the nurse said to the other nurse, "forget it, this (an 18) is the best you're doing with this one. Nothing works, not hot packs, not gravity. I don't know what's going to happen to me either it's getting worse all the time. Probably a port. Never allow a trainee or newbie to do you. Stand up for yourself. I refuse to allow ambulance EMT's anymore after my last trip they distroyed my only good vein in my hand. He was SURE he could do it in the bumpy ambulance! Nope. Now I am adamant. Good luck, this is a very difficult part of sclero. Karen
  10. Thanks everyone, it's all very interesting for sure. I wonder why the doctor warns against weight training? I'm really nervous because I seem to be getting weaker and weaker, any knowledge of that? Karen
  11. A temperature is not a symptom of scleroderma. I'd have that checked. Feel better. Peace, Karen
  12. If you can get the information, I'll try anything! I live in far eastern NY about 15 min. from the CT border so let me know! Karen
  13. Hi Kaybear...chill out girl! I have crest too and for someone who said "I'm one step short of scleroderma" That's not quite right. CREST IS scleroderma. It's an old outdated term not in much use anymore. The red blotches are called teleganesticias (I CANNOT spell or pronounce it). They are the "T" in crest. Once you get to the Rhumey, (and frankly 5 months is WAAAYYYY too long to wait, find another doctor!!) he/she will tell you if you have limited or diffuse. Read as much as you can on this site and others, you're fear will subside some. Many many types of scleroderma do NOT progress! The doctor told me that since I had Raynaud's as a presenting symptom over 10 years ago, and so far no organ involvement, it was unlikely to progress. Usually if it's going to get bad, it does so fast, in the first two years, that's my understanding. Even so, there are lots of medications to minimize the complications. It is not a death sentence. Painful at times, YES. Scary, YES. Be informed. Learn all you can. Get an exellent doctor. take good care of yourself, be selfish and put your health first. Good luck and welcome, Peace, karen
  14. Whoo Hoo Kelly! Congratulations!! My opinion, since you asked... :D ....I don't think it's tacky to have pamphlets at the wedding, BUT I would NOT do it. If it were me, I would think, Your wedding day should be glorious, pain free, happy, joyous, a respite from the usual days. I wouldn't want people focusing on my illness. People would see the pamphlets and look askance at each other, maybe whisper and look at you (and hubby to be) pitifully. Yuck. They'd want to ask questions, everyone would be talking about "poor kelly...poor hubby!" and I think you should do that on another day. As for staying home, ah! It is nice to stay home. Not nice to be sick, for sure, but THAT's your opportunity to tell them gently, "hey, ya know, really, I'd rather be working (would you??) but with all my dotors appointments, (or whatever) hubby and I have decided that right now is the time for me to focus on my health. Sure we need more money like everyone else, but we've decided that my health comes first right now" Or something like that. I too, get sooooooo tired of explaining my limitations to every single person who calls, sometimes I elect my sister to call the rest of the family when I'm in the hospital or feel really down. I unplug the phone and screen my cell. Happy wedding day Kelly!! You do what's right for YOU and hubby and the rest of the world can figure it out later. Peace, Karen
  15. Hi, I just got another diagnosis, fibromyalgia. Is it common for it to go along with Scleroderma? How can they tell the difference? Is there separate treatments? What next? :( Karen
  16. LOL Barefut, Not only is the appendix on the right, I don't even have one, having no colon at all! :) I went to my chiropractor yesterday and she says I am just chock full of adhesions from the colectomy. Everywhere she pressed the pain was intense all up and down my left abdomen and side. She also tested me and said I have fibromyalgia, whcih I figured, but with all the other pains, seems like small potatoes! Anyway, she is working very painstakingly and painfully to release the adhesions. It's called myofascial release. Let's hope it helps. Thanks for your responses! karen
  17. It started about four months ago, pain in my lower left abdomen, like a severe stitch, that went away when I rested. Then it would come on from a simple walk around the block. Then it came on from just housework! I'd get the pain, increasing from mild period cramps to severe period cramps that wrap around my back, make me sweat and feel nauseous. I rest, and it goes away. Now I feel it, even when sitting still, or walking around school. I am peri-menopausal, get a period once or twice a year. I have no colon so it's not that. I've had CAT scans of the abdomen by my GI doctor, sonogram by my GYN. They see nothing wrong, except a small hernia on the mid-line but in the upper abdomen. Could this be sclero related? Any suggestions? I've had three heart attacks, due to sclero related artery problems and NEED to get to cardiac rehab, but this is becoming debilitating! Karen
  18. Hi Ani! Listen, tight feeling in the chest is NOT NORMAL.. I had all the heart tests too, and they all showed up normal. I was so incredibly tired and after about two weeks so much in pain I went to the ER, twice in three days! Even in the hospital they kept saying I was fine. I was having a heart attack. I've now had three in two years, all three times they said it couldn't be that, and IT WAS. I had 99% blockage in three arteries and I DON'T have high cholesterol, don't smoke, don't have family history and I'm only 49. If you don't feel better soon, and if the pain in the chest gets worse or goes to your neck, arm or hand, go to the ER and insist on blood work. Some of my other worsening symptoms were anxiety, sleeplessness, and the pain got worse and worse. I doubt this is your problem, but hwenever I hear "chest pain" I go on my rant. I want women to know the signs and get their doctors to listen. Even after two HA"s my doctors were still saying as they wheeled me into the Cath lab, "it's probably just anxiety"!!! GRRRRRRR< I'm NOT an anxious person! NOW, after three, the doctor said "You REALLY know your symptoms. From now on, MAKE us listen!" Good luck and I hope you feel better. LISTEN to your body! Karen
  19. Hi Kelly, I'm so glad you brought this up! I feel like a monster towards people, but hopefully they don't notice. Whenever hubby complains, I listen with half an ear, mumbling half sympathies. He is the one who says "I don't feel like I can complain with all you go through". Which is nice. BUT, I'm so sick of always being the sick one! When someone says how are you, well, what's the answer to that!? I could go on for 15 minutes with just the bare essentials of what's bothering me at any given time, but usually I don't complain. What I've adopted is this...whatever hurts someone, HURTS and that deserves attention. You could say something like this, "wow, that's terrible. how do you deal with it"? Or just remembering a time when you only had one thing that hurt, like maybe a cold an trying to remember how miserable you were. It's hard, I know, but sometimes, just for a moment, it takes my mind off myself. I have the advantage of working in a Middle school/high school, where everything is always high drama, and of course the kids are totally egotistical. I LOVE them and their teen angst! I forget myself for 7 hours a day! Then collapse at home :unsure: Good luck with this one...it's a toughie. keep being the sweetheart you are. we here, love you just the way you are. Karen :rolleyes:
  20. Thanks again Gidget! I will pursue the company aspect of your information. The appeal turn down letter actually did say it is my particular policy that prevents this...maybe... I know you can't get Viagra, but have you tried to get Revatio? It is definitely approved for PAH and maybe for Raynaud's too. Check on it! Unfortunately, I can't take either due to my heart issues. As my doctors are fond of saying I'm a complicated case, but aren't all of we sclero's? Oh well, at least we have each other! Peace Karen
  21. tammy, I too, know exactly how you feel! It's so frustrating. I am not teaching full time either and some days wish I could and others, I think "wow, no way can I do this any more"...I'm substituting and glad to be able to walk away at the end of the day, although we are suffering financially. What I want to know is WHY are we all so tired? It's almost like a curtain comes down on me and BOOM, I'm done! Some evenings, I fall asleep watching tv with the family, then I can wake up and function again after a little nap. I have a real issue with vitamins because I don't have a colon. Any suggestions? karen
  22. Hi Sam, Since you had a hysterectomy in '93, I would have thought you'd have gone through menopause at that time? The night sweats are definitely a hallmark of peri-menopause. I take natural progesterone cream topically, and it helps in a about a week. It doesn't interfere with any other medications. I hope it's not your new medication. Good luck Karen
  23. Wow, I never cease to be amazed at the outpouring of love and support and knowledge on this board!! Thank you all so much. To answer your questions, I have limited systemic scleroderma, the 'old' CREST. I also have celiac disease, coronary arterty disease (three stents in 2 years even though my cholesterol is perfectly low!) I had my colon out 12 years ago due to ulcerative colitis, because of celiac I have osteoporosis in my hips and spine. They've also just discovered that the blood vessels in my abdomen are clogging, and I have severe pain even just from exertion as light as housework! They will be stented as well. Two years ago I was on the pain medication patch, like Peggy, after becoming immune to pain medication when the tip of my finger fell off due to gangrene. To be honest, when I hear of yet another connected disease that might be the cause I feel like going back to bed and covering my head. Usually, I'm very active, happy and really upbeat! But with the winter coming I am getting more depressed with each minute we lose in daylight. I feel like they are holding me together with duct tape some days. I wake up with a headache, stiff knees, sore neck and I just think, "oh great here we go again". By the time I'm out of the shower, I'm a lot better and do well until about 4:00 then I get so tired I almost fall asleep driving! It's like a drug, the sleepiness. I was a girl scout leader, cub scouts, a very outdoorsy science teacher in a Middle School, Now it's all I can do to drag myself to the store somedays. I am not taking the same pleasure in activities I used to. My last year teaching, I took my classes on a hike. I had just had a stent placed two months earlier and was recently diagnosed with sclero. I was about a mile behind everyone else! I barely made it to the summit. Sigh. I'm only 49, but my body thinks I'm 65. I'm sorry to be negative, usually I'm not, and if any one of you were to need a pep talk I'd be first in line to tell you to get your act together. Today, the thought of polymyositis or anything else just gets me down. Another thing on the list. If you met me, except for the tell-tale red on my face, you'd think I was a really nice happy lady, with no problems at all. Sigh, (again) I didn't mean to ramble, but you guys understand. Tomorrow I'll be me again. Peace, Karen
  24. You can have Raynaud's alone it's called Primary. I had it for 10 years before any other symptoms, then was diagnosed with Limited Scleroderma. Unfortunately, Raynaud's is sometimes the first thing to show. Do you also have any gastric problems? GERD? That's another symptom. Good luck, Karen
  25. I am having a terrible time going up and down stairs and opening jars. It seems to be getting worse. I read somewhere that scleroderma effects your muscles. anyone know what to do to help? I feel like an old woman! Karen
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