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Everything posted by barefut

  1. Yup. Me too.
  2. Oh how I feel for you in your time of pain, especially having to care for a 2 year old. I don't have much good advice today, only sympathy and a cyber hug for you. Take care, take it easy and do something nice just for yourself today. Some things you've probably already tried.... Lots of long hot showers or baths Moist heat - microwaved towels Alternating ice and heat Topical relievers Tylenol PM for at night Good luck to you. Barefut
  3. Hi Barbs, I have only run across one other person claiming to know someone else with Raynaud's. Keep in mind I live in a small town and I don't get out much :P Barefut
  4. Just a really REALLY bad day today. It started out bad from the get go and snowballed from there. It's been one of those days where no matter how much you try to focus on the little good things that happened, the bad stuff just kept on coming and getting bigger and badder. It was the kind of day that makes you think, well, nothing ELSE could POSSIBLY go wrong and yet it does and in the worst possible way. I bend over backwards to accomodate everyone else's schdules and everyone else's delicate feelings and when I need MY feelings or MY schedule taken into consideration everybody acts like THEY are victims. And then to have to endure their snide remarks and unjustified personal attacks ....well it was just too much. Then when I realized that I don't even have any girlfriends to call up and unload on without feeling guilty or pathetic, I of course turned to my message board in tears. It was the kind of day that makes me question what I'm doing with my life even though I have never felt better and more on track lately. I know these days happen to us all but it hasn't happened to me in a long time maybe that's why its throwing me for such a loop. It just seemed that the universe was against me. In the midst of one of my battles with people today, I found it ironic that it was my soon-to-be ex husband who was in my corner. The only other person who didn't give me any grief today was my hand therapist. She was great and made me feel really good about myself and how I'm dealing with this disease and my life. I guess that's a good note to leave this on so I will stop now. My hands have been totally purple for the past 2 hours from the stress and I need to get them into some warm water. Thanks for 'listening' Here's to better days tomorrow. Barefut
  5. Well Thanks Girlfriends! Yes, my yesterday went much better. There were three big "challenges" for me on Thursday. I kept asking myself what in the world am I supposed to learn from all of this?! The one thought that kept coming back to me was that I should just "let it go". It was hard, but I did and I feel better. Learning to let some things go IS something that has been hard for me especially where there is injustice. I have always carried an over developed sensitivity to justice and fairness. (Comes from not getting any as a child.) So it was another challenge to recognize that this was one of those times it would be best to just let it go. Funny thing (weird, sort of creepy thing) - my 4 year old said that out of the blue lastnight when he was watching TV, "Let it go, just let it go" I asked him what made him say that but he didn't have an answer. That confirmed to me that I was doing the right thing, letting it go. And today I didn't even think about Thursday's challenges. *SIGH* Thanks again for your kind sympathy and words of encouragement. Love you all! Barefut
  6. Lisa, I am so happy and relieved for you and your family. Hopefully Grace can now get on with being a healthy, pain free 6 year old. I'm glad that your stress and worries about the surgery are over. Wishing Grace a future of dancing, gymnastics, bike riding, and all the other fun active things little girls do. Love, Barefut
  7. Irene, I felt exactly the way you do, most of the time, for like the past two years. It was getting really bad and I finally demanded something for the pain and fatigue. (although I had more pain than fatigue most of the time) I started 5mg prednisone almost a month ago. I know pred comes with a lot of scary side effects and needs monitoring etc. but I can't tell you how much better I feel. I feel like I have my old life back. When I first realized one day that nothing hurt, I nearly cried. It was the most amazing feeling of peace and calm and tranquility that my body has not felt in probably 10 years. Since I feel so much better I am actually motivated to take on all those projects that have been on the back burner for so long. Not to mention being able to just GET MOVING again! I am starting a water workout class, I am shopping for a treadmill and I can't wait to get out in the yard (when it WARMS up!) Maybe daily low dose pred could be for you too. Ask your rheumatologist about it. I know after this post you will get a lot of people warning you about pred. That is good. Find out all you can about it first and decide if its right for you. I have decided it is well worth it for me. So far no bad side effects. Quality of life is what its all about for me. I have two young boys to keep up with and I'm not ready to fold it up yet. Sounds like you have some experience with pred already so you know what good it can do for you at least short term. My hand therapist talked to me about pacing myself and metioned to me that when you go for broke on good days and then take your down days afterwards you can eventually sprial downward. She said its better to take the peaks and valleys of life and try to chop off some of the peaks to conserve energy so that you end up progressing in more of a straight line. Hang in there and keep in touch about what you decide to try. Barefut
  8. Hi Graywolf, I just found out there is a "deep water workout" class at our city pool offered right after my kids' swimming lessons. I watched them and it looked like just the thing for me. They strap on bouyant belts. The workout is 1/2 hour and reasonable at $4 per class on a drop in basis. The first class is next Monday. It looks really easy (gentle) I am exctied to go. I will let you know how it went. Barefut
  9. Sadie, Copy the replies you get, especially from those who still work in hospitals and take them with you to show your rheumatologist - in case she needs extra convincing. Good luck, Barefut
  10. I agree with Mari about focusing (and writing down!) all the weird symptoms you've been having, even if they seem just too strange to mention, don't be afraid to mention them. I went in to my first rheumatologist visit with a page long list of every big and little thing, even if I thought it had nothing to do with sclero. AND even if it wasn't a particularly bothersome thing. I'm glad I did. Your rheumatologist will read it all and pick out what's important to pursue and what isn't. I've taken a list of new and worswening symptoms to her at my visits ever since and she appreciates it and understands the need to write things down. She always asks to keep the list. At my last visit I added muscle cramps and twitches to my list at the last minute, which weren't particularly bothersome but thought I'd add it. She said they are a symptom of low potassium. I didn't know that. Turned out my potassium was ok. But I'm glad I mentioned it because now I've learned something. Welcome to the site and good luck with your appointment. Try not to stress too much. (my eye twitches under stress too) Keep us posted. Barefut
  11. Anne, Just thinking of you since seeing coverage of the Valentine's Day snow storm that hit NY as well as Chicago. How are you doing? Are you able to get there at all now? Sure hope you're not caught up in all that mess! Keep us posted, Barefut.
  12. Hi Sadie, I have a preschool out of my home and I also babysit. Working with a bunch of snot nosed kids who are the best little germ spreaders in the world, concerned me. I asked my rheumatologist and pulm. doc. what they thought and they both said go for it if I'm up to it. Pulm. doc just cautioned that if I ever got a loose cough and chest congestion to go in for some antibiotics. Considering how many kids come through here and how much time they spend here and how often at least one of them has had the crud, I have been very lucky and pleasantly surprised to have had only 1 mild cold in October and another about a month ago which hung on for about 3 weeks but was only mild as well. I never had to "call in sick" AND, just recently two of the kids I sit for as well as both my own kids had a nasty cruddy cold with fever and horrible loose cough and I DIDN'T GET IT! YAY! I was fully expecting to but haven't and am amazed since I'm on Cellcept and have just begun Prednisone 2 weeks ago. So, there you go. But of course, as the mantra goes, "everybody is different" What if you wore a surgical mask at work? Would that make your rheumatologist feel better? Do you have to have rheumatologist approval in order to be allowed back at work? Good luck. Love, Kelly
  13. Hi Westcoast, I have motitility problems too. I had an esophageal motility test done a year ago. I had to swallow a nasty radioactive mixture and then lie in an extremely uncomfortable position, on my side and drink water while they watched it go down on a monitor. It didn't go down, so I had to prop myself up gradually until they saw it start to move. The proceedure wasn't painful but just very uncomfortable. The test also showed that my lower esophageal sphincter stays open allowing food to creep back up if I lie down with anything in my stomach. So it's early dinners and no bedtime snacks for me. Like Elehos said, I also have good days and bad days with it and there seems to be no rhyme or reason as to why or what works or what doesn't, to help or prevent it. Sometimes even a drink of water on an empty stomach feels like I swallowed an egg whole. I haven't experienced any pain with it though. Certain foods, especially chocolate , aggravate it. No more salsa for me either :( Even decaf has started bothering me. My pulmonologist said that it's possible to aspirate reflux while you sleep and it can contribute to lung problems. Prilosec controls the acid but I can still have (non acid) reflux at night unless I go to bed on a totally empty stomach and sleep in my recliner. Hope this info helps. Take Care, Barefut
  14. Well, I found out today that my hand therapist isn't even a hand specialist! She's a general occcupational therapist. I like her and I think she can do good things for me but it just ticks me off because I SPECIFICALLY asked for a HAND therapist and one who has worked with sclerodarma before is possible. On top of this, her availability conflicts so badly with mine that I haven't been able to get 2 one hour sessions/week for 4 weeks like she would like for me so I have to settle for what I can get which so far has been ONE 1/2 hour appt /week. It's too late now to find someone else so I'm gonna stick with her for the next 4 weeks but if I ever go again I'm going somewhere besides our small town local hospital.
  15. Like Shelley said, I "plan for the worst" but I only HOPE for the best because I am not at the point of "expecting" the best yet. (But I am close.) Hopefully someday soon I can get there. I have Diffuse Systemic Scleroderma with lung involvement (among every other organ) diagnosed just over a year ago. Hey, if I'm gonna get a disease might as well do it up right. I'm SUCH a perfectionist I read that a person at my stage in the game and with the symptoms I have, has about 6 years. But those are the statisics and I am not a statistic. I am a single mother of two precious young boys, separated from an abusive husband, trying (and failing) to make a living with my in home preschool and get a divorce. So, I don't have time for this stinking disease to slow me down in any way shape or form. I've got things to do, places to go and people to see. And I am determined to have a blissful new life before I have no life because I deserve it. The first 3+ months after my diagnosis were emotional chaos and I still have my moments. This disease has taught me that sometimes I need to come first and that's just tough noogies for anyone who doesn't like that. It has also taught me to quickly weed out the things in life that don't matter or that really don't need much attention and which things to really focus on. I'm subconsciously re-prioritizing all the time. Sounds cliche but I am living one day at a time and I am living IN every precious moment, good and bad, and trying to make the good win over the bad. I have a lot of BIG stuff going on and I focus on one thing at a time to get through it all. I have had to learn PATIENCE because all good things take time and I am a "get it all done all at once and right now" kind of person (not to mention, I only have 6 years left! ;) ) Probably hardest of all for me, I have had to learn (and still learning) not to feel judged by all the things I cannot do anymore and to not feel bad about asking for help. I still hear judgemental voices criticizing my yard, my unwashed vehicle, the moss on my roof, and my dusty house but those voices are probably only in my head anyway ;) *Sigh*.....Wow. Okay, so what was the question? Oh yea, one more thing, humor. Gotta absolutely have lots and lots of humor in your life. If you can't find it or it won't come to you, make it up yourself. Well, I think I'm about done rambling now. Good night all and be well. Barefut
  16. Elehos, Coincidence you should post about this - I just experienced for the first time tonight the bug bite sensation on my lower shin. I have had a vacation from skin sensations and now they are all back again and annoying. I've had itchy patches on my lower legs and when I scratch them it burns. My face is starting to itch too. Sometimes I want to rip my nose off! aaaaaggggghhh! (sorry for the graphics) And Margaret, I second emmie's post. Gareth is a lucky young man to have you for his mom. Barefut
  17. I have to say that I am not upset with my therapist. I do really like her. I'm upset that I didn't get what I asked for. Now if what I asked for was not available, then just tell me! Don't try to just put me off like my request is unimportant. I have good reason to ask specifically for a HAND therapist and it's not the scheduler/receptionist's place to just blow off my request. There. I feel better. On a more positive note, I was impressed that my occupational therapist did a little research on scleroderma. I know that the things she's showing me and doing for me will definitley be helpful but the reason I wanted a hand specialist is because there may be things that a hand specialist knows and deals with regularly that an occupational therapist doesn't see everyday and I don't know what important little tidbit I may be missing out on. I had my first parafin wax dip today...AHHHHHHHH! Nice. Now I just gotta plug mine in. She also used a small vibrating massager around my knuckles that really felt good and relaxed my hands. She showed me where I could buy one and now I can't wait to start an evening routine of heat, massage and stretching while I watch my junk TV. She also gave me copy of facial exercises and she wants to work on my shoulders too. Maybe I should be grateful for not getting what I asked for?
  18. Hi Margaret, That was probably me who mentioned the cobwebs. It's a sensation that feels like I just walked through a cobweb and sometimes, like Sweet said, stray hairs falling across my face. I also get sensatons that spiders are crawling in my hair or bugs are scurrying through my hair,across my scalp. Other sensations I feel sometimes is that of papercuts on my hands, forearms, elbows and shins. It's an external feeling to an internal thing for me. Hope this gives you some insight. Love, Barefut
  19. Well Congratulations Jennifer and a very happy Valentine's Day to you both! (sure beats the dating scene huh? ;) ) Best wishes to you and your new hubby. Don't even THINK about your insurance nightmare tomorrow and I hope you are doing well in the mile high city. Love, Barefut
  20. Wow guys, This is all something I've never heard before. Thanks for bringing it up and thanks for the links. I can't imagine me being deficient with as much milk as I drink and as much sun as I get (when the sun shines in the Northwest) Anyway, I'll be doing some reading....keep us posted and Thanks again, Barefut
  21. Margaret, That is wonderful news about your son's CT scan. I heaved a sigh of relief that he does not have any lung fibrosis. Good on the other blood work as well. I don't know anyting about the Anti RNA Polymerase but it sounds like you're worried about that. I'm keeping you both in my thoughts. Good luck with your appointment in Pittsburgh, and keep us posted. Best Wishes, Barefut
  22. Thanks Heidi, That's the one I was talking about. :) Barefut
  23. Hi Nan, My diffusion capacity is reduced also. doctor says there is mild-moderate scarring on my lungs due to the sclero. This was diagnosed by a CT scan. He called it "glass" as I guess it looks like glass shards on my lungs on the CT image. I believe my proper diagnosis is Interstitial Lung Disease. I of course can't speak for your doctor but just telling you what's up withme. My doctor said my PFT/diffusion fluctuations over the past year have been minor and therefore that tells him that my lungs are stable. Minor fluctuations are nothing to worry about as it could be attributed to a different machine or different technician. My diffusion rates have hung around between 67 - 70%. I found online information on how to read/interpret PFT's results. I will look for it again and see if I can post it here. Be Well, Barefut
  24. So some days my hands &/or knees are more swollen/puffy/stiff than others. Why is this? Does the excess collagen just float around inside us looking for a place to set up shop permanantly? Or is it more like a gypsy caravan, always traveling but never stopping for long in any one place? Why does it especially like certain places as opposed to others? (tendons, ligaments...) I had my first visit with a hand therapist today and she seemed to think that she would be able to move it out of my hands, albeit temporarily. I'm not so sure. I really want someone who has worked with sclero patients before. I'm not sure she has. Iwill ask next visit. She suggested, to my delight, that she wanted to work on my shoulders too, to improve flexibility. She wants 2-1hour sessions/week but due to scheduling, I can only get mostly 1/2 hour sessions <_< Has anyone else had hand therapy? Did it do much good for you? Thanks, Barefut
  25. I always do the worst case scenario thing like Heidi suggested. It is amazingly very helpful. Can the airline have a wheelchair waiting on you so you don't have to wait on the wheel chair? Or what about the courtesy cart rides. Arrange for one of those and be whisked away like royalty. Also, I always spend 2 days making lists and packing so I'm SURE to not forget anything and I make sure I have only the bare essentials for carry on so I don't have to lug too much. Take what you do have to lug on wheels. The heat patches are also a GREAT idea. Good luck and like Heidi said, try not to stress too much. Barefut