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Everything posted by Kaycee

  1. Barbara, I agree that you should have it checked right away. Heart attackes do present differently in women than men and your symptoms are frighteningly like the symptoms women should look for. In the meantime, the lightheadedness could be due to low blood sugar. I know the feeling quite well being a diabetic and know when I feel that way, to get some sugar in my system to raise my blood sugar to a more stable level. Please don't rule that out either.
  2. Karenlee, ez described the difference exactly. Occupational Therapy is more to help you do every day things in an easier of different way. So I learned different ways to for example open a carton of milk or grasp a door handle or even take a shower. For people like us, both are actually needed and work well together.
  3. I do have some curling but mine were curled before I even realized it. My right hand is worse than the left and they are not nearly contracted as some others' are, but I can no longer lay my hands flat on a table anymore. I try not to sleep with them curled up, but it is a habit and hard to break. I also, was prescribed some physical and occupational therapy and went for 6 weeks with exercise given to do at home. I'm not deligent with them, but should be.
  4. Hummy, My actual approval only took 3 weeks from start to finish but it took me 5 months to receive my first check. That was because I had to be out of work for 5 months before I was eligible. If you have not been working, you may have met that requirement and could very well have received your first check. Do you have online banking with your bank? If so, you can look at your account to see exactly what was deposited and when. Here's hoping it is good news.
  5. I'm intrested in this info as I am now taking Lisinopril but am having a heart catherization on April 30 to get a clearer picture of the exact pressure in my heart. Of course, I am scared to death about having this done even though I know it is a simple outpatient procedure. They have a hard time now finding a good vein for bloodwork and IV's so I can only imagine what a time they will have finding a good artery. :unsure:
  6. I can get the numbness, too, even though my body is actually hot. Go figure!
  7. Okay, Tru, I'm late jumping on this one but here goes...when I applied (and I was approved on the first try with NO visit to THEIR doctor or appeals of any kind) I gave them a list of medications AS WELL AS a list of all of the possible side effects AND indicated which side effects I suffered from. Similar to the flow chart. I also gave a very detailed list of how the disease affects me on a daily basis and was very specific. Based on everything I had heard previously and what people now tell me, I am sure this is what helped my case. That and an excellent team of physicians working on my behalf. Good luck and keep us posted.
  8. I've never experienced the burning mouth so I can't say I know how you feel. They do make children's toothpaste so it doesn't harm them if swallowed. I have some for my granddaughter and it is a bubblegum flavor. Right now I use an electric toothbruch that has a smaller head that fits in my mouth better. Since the head is small, I don't use as much toothpaste and that may be why it doesn't burn me. The burning being a gastro problem seems feasible to me since the gastrointestional tract begins at the mouth. As for a compassionate dentist, I do have one. He is great. When I was first diagnosed, he had heard about scleroderma but he took his own time to research it so that he can customize my treatment. Now I have been a patient of his for 30 years, but he has a thriving and growing practice. So to take time to research how to treat one patient meant a lot to me. Hopefully you all will find someone just as willing to work with you.
  9. Tru, I, too, hope she joins. She'll find a wealth of information here. And friendship.
  10. Lady Deb, Good luck with your tests today. You will be in my thoughts. I know it is frustrating having t deal with medical professionals who don't believe us. I blame it all on all of the junkies who go from doctor to doctor looking to get drugs to feed their habits. Doctors have gotten skeptical and now it is us, the real patients, who suffer. Hang in there, we're all right here with you. Much love, Kim
  11. Kaycee


    Thanks for the invite. I didn't feel slighted in the least. Much love, Kim
  12. Kaycee


    Linda, I am so sorry you have to go thru this just to get the medical coverage you need. That's why I firmly believe we need some type of government healthcare. Many of us fall thru the cracks when it comes to healthcare and especially with a chronic condition like we have, we absolutely need it. Good luck on finding something that will cover your needs and be most cost effective for you. Much love, Kim
  13. Barbara, I'm so glad everything went well. Enjoy the drugs and get some rest. You deserve it. Much love, Kim
  14. Nan, I am so sorry you are going thru all of this. Hang in there and know you are in my thoughts, Much love, Kim
  15. Sheryl, Must-Go sounds yummy. I have that every so often too. I do have major GI problems but usually as long as I take my nexium (40 mgs 2x daily) and Zantac (200 mgs every night before bed) I am usually good, However, I forgot last night and knew it as soon as I woke up this morning so the hubby had marinara sauce and I had alfredo sauce on mine. My boys were supposed to be here for dinner (Dana, 30, who lives a few blocks away and Craig, 19, who lives at home) but neither showed up so it was just the two of us as usual. Now it is 8 PM and I am having my dessert of vanilla ice cream with brownie cookies. Yummy and soothing on my tummy. Anyone else fix anything good for dinner tonight?
  16. I, too, do well after the EGD. I always tell them to give me enough drugs so that I don't feel a thing. And not being able to open my mouth very wide creates a big problem as they have a hard time getting the mouthpiece in but once it is, everything else is a breeze. I always have to have my esophagus stretched and they always find a polyp that has to be removed. So it is definitely a yearly thing for me. Now as for my healthcare, I rely on my rheumatologist for my care where the sclero is concerned but my primary care physician is copied one every thing I have done from every specialist I see, so she is fully aware of what is happening and is very good about staying on top of it. She is usually the one who calls with results of bloodtests ordered by other doctor's, again because she gets a copy of everything. I make sure of that. But then I make sure every doctor gets a copy of everything every other doctor orders. If they don't want the info, they can pitch it but I believe it helps them in their area to know everything else that is happening with my body. And I am very pleased with how well they all work together. I'm just a little annoyed about the referral appointment thing. I have appointments every day for a week starting Thursday so I'll give them another two weeks and if I don't hear anything, I will call myself. Thanks for all of the good advice and know that I do appreciate it all.
  17. Sam, I am so sorry you are having trouble sleeping and now the nightmares. Here's hoping everything calms down and you are able to get some rest. I'm getting ready to get into a hot tub to try to ease some of this achiness I've had for the past few days. Then into a terry cloth warm-up suit and just vegging the rest of the day. Have already done my housework for the day and am having rigatoni with marinara sauce for dinner so I'm set. Will chat later.
  18. Thanks for all of the tips. I will be sure to try the ones I am not already using (and I am already using quite a few of them). I especially like the vitamin K creme for the telengiatasias (sp) as I have many on my cheeks. The only good thing is when I apply my mineral foundation, I don't need blush as the red from the spots shows thru just enough to make me look like I am blushing. As for the Raynaud's, I too try to keep my kettle on low most of the day and pour myself a mug of hot water and just wrap my hands around the mug. I've even done that in restaurants where I tend to somehow always be seated under the air vents...go figure. Just my added info to this page. Much love, Kim
  19. I know I am a little late coming in on this one but I have Diffuse Scleroderma which is also known as Systemic Sclerosis. From what I have been told it is the most damaging and most progressive of all the forms of scleroderma (by my rheumatologist anyway and he lectures all over the world on the subject). I do suffer from Raynaud's, fibromyalgia, sjogrens, polymyositis, am an insulin dependant diabetic and have major GI involvement. It has also affected my kidneys, lungs and heart as I now have mild PAH. But in spite of all of these things, I just keep plugging away trying to live each day to the fullest. I hope this info, as well as the info the others have given you, helps clear things up for you.
  20. Thanks for the welcome. I feel at home already since I already know so many of you and those I don't, I am eager to get the chance to know you. I've been taking some time just trying to read some of the newer posts and get caught up so be patient with me if I don't post much at first. Just glad to be back among friends. Much love, Kim PS. Pam, glad to see you here, too, as a Support Specialist!
  21. I'm gonna jump in here with my cure for the blues. Now that I am no longer employed outside the home, I get depressed quite frequently. But I have a wonderful group of freidns who continue to include me in almost every outing they take. So usually once a month, we get together for a "girls day or night out". Sometimes, it is an entire weekend where we go shopping, have dinner and drinks, go to the spa, or just chill at someone's house. It gives us a chance to laugh, catch up with each others' lives and unwind without children or spouses to worry about. Our own little slice of "paradise". For those times when I can't get together with them, I make it a point to have my hair done and get a manicure and pedicure every two weeks like clock-work. Looking good always picks me up and makes me feel better. Hope that helps. Much love, Kim
  22. Mine is easy...my initials KC...hence KayCee Much love, Kim
  23. Hi. I am not really new here as I was previously an ISN Support Specialist when the forum was on the MSN Boards. I have just rejoined now that I have a little more time to post. I was diagnosed with Diffuse Scleroderma and a host of other ailments in Februsry 2002. You can actually read my story at http://www.sclero.org/scleroderma/support/stories/engl...cee/a-to-z.html. I'm just glad to be back among friends both new and old. Much love, Kim
  24. Mando, I have had several endoscopies with them stretching the esophagus as well as having had a manometry last year. Not a pleasant experience but they were able to determine that my swallowing reflexes are terrible. I was also told after my first endoscopy that I will probably have to have one every year or so for the rest of my life. So I am learning to cope. But my gastro is only in the office to see patiendts one day a week. The rest of the time you have to see a physicians assistant, which I hate because she can never answer any questions. I have learned to insist on having all of my appointments with him. Meanwhile, my last bloodwork showed some irregularities in my hormone levels so they were referring me to an endocrinologist, but that was in early February and I have yet to have an appointment scheduled. They made it sound like it was urgent, but obviously not. We'll see. In the meantime, try to relax and wait for the results of your endoscopy. It will help put things in perspective for you. Much love, Kim
  25. Kaycee


    Hey Sweet. I just rejoined on this forum last night and thought I would comment here for you as well. Take your time and enjoy your family while they are still here. You will have plenty of time to catch up with us. As for your disability interview, I will keep my fingers crossed for you. Much love, Kim
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