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Bunky

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Posts posted by Bunky

  1. Thanks Peanut, Barefut, Lisa and everyone so much for the input. I agree I need a new doctor.

    I'm so uncomfortable today that work sent me home saying I looked awful. I then called the pharmacy for a new inhaler, and I'm out of refills. (Fortunately, I have a home nebulizer so I'm not entirely without meds) My primary care physician is out of town until March 31 so I can't get a new prescription, I don't want to go back to the pulmonary dr. I saw last year, so I feel out of options until my dr. comes back and I can't get referred to the sclero specialists at UCSF until I see my dr. again.

    Oh well. It's really not that bad. I got to spend the afternoon with my husband ( he had an unexpected day off) instead of working until 6 or 7 or 8.

     

    I am so grateful for this forum.

     

    Thank you to all the volunteers! You are greatly appreciated!

     

    Bunky

  2. Hi, as I sit here and try to catch my breath, I would like to ask all that read this that have lung issues if your s.o.b. symptoms are always there, or do they come and go? I don't always have symptoms, sometimes I feel as if I'm perfectly fine, other times I feel fine until I walk up stairs, and still other times it'll start as fatigue and then tightness in the chest, and I know I'm in for a long haul of breathing issues that sometimes lasts a couple of weeks or even months. My pulmonary Dr. says my s.o.b. is probably not related to sclero because it comes and goes, but he says it's not asthma. Does this sound right? I sure would love for it not to be related, but I also don't want to ignore something that could be sclero related. Any input would be appreciated!

     

    Thanks!

     

    Bunky

  3. Hi everyone!

    I haven't posted for a while, but I've been reading often. I feel very fortunate because I had about four months of very few symptoms. But now things seem to be returning. New morphea patches, severe heartburn despite meds, mild raynauds (strange that it returns when the weather is starting to warm up), itchy skin, short of breath, etc.

    I'm going to ask my MD to refer me to the scleroderma/morphea/autoimmune clinic (Dr. Kari Connelly, sclero expert) at UCSF (San Francisco). Has anyone seen this doctor?

     

    I went to the rheumatology clinic at Stanford last may and it was a complete waste of time. They only new sclero from what they read in med school. I knew more than they did, and that's not saying much! Would love to here if anyone has seen the doctor at UCSF.

    Thanks so much!

  4. Wow!

    Thanks for such fantastic advice! I have been walking everyday, but still probably not enough. I'm going to step it up tomorrow. I never considered the guest with disabilities pass, and since I'm ambulatory, I would have never thought to use it, but I am going to consider it now. We are fortunately going the first two weeks of December, so crowds are lower, but the standing still in line can be very painful. This is all worth looking into. Thank you all again.

    Beth

  5. Hello!

    My husband is taking me and the kids to Disney World for 14 days in December, I'm so excited about the trip, but also worried. I'm afraid I will let my husband down by getting sick or flaring up while we're there. And although he is very caring and helpful, this is HIS dream vacation, and I know he'll want to go go go. I've been trying to think of everything I can do to stay well, but I've never been on a trip this long before, much less to a theme park this long. We went to a local amusement park for one day this summer, and I was exhausted and sore for days afterward.

    Any tips for staying healthy while travelling would be greatly appreciated!

     

    Thanks!

    Beth

  6. Hey everyone, I hope you are all feeling ok tonight. I have a question and I'm sorry if this has been covered before, but I don't get a chance to read the forums very often...

    Does anyone have upper abdominal burning pain? Pain that feels like road rash on your insides? I have interstitial cystitis, and the pain feels exactly like that, except for high in my abdomen. It also seems to be worse when my GERD is burning my throat. I will be having my first endoscopy soon, and would like to be able to inform the doctors. what other patients experience. ( I live in a rural area and seem to have to teach the doctors. here about my condition. Good thing is they are very receptive, I've done more research than they have on sclero!)

    Any input would be appreciated.

     

    Thanks,

    Beth

  7. Hi, I found out today I need to have my first endoscopy. I read some other posts but have a few questions:

    1. Is there any prep needed?

    2. Are there any after effects?

     

    I hate procedures where they put me out! I react with an elevated heart rate and vomiting (even with the twilight meds). Yuck! So I just want to be prepared. Also, is there down time after? Do I need to take time off work?

    I'm not really worried about the outcome. My symptoms are mild, but because I still have reflux even with meds, plus seem to have asthma associated with the reflux, they want to check it out. Just another thing to add to the mounting medical bills! :)

  8. Hey everyone. Hope everyone is feeling OK tonight. I haven't posted for awhile, but I've been reading often. When I saw this forum, I felt like chiming in.

    I always wanted to work for an independent newspaper when I grew up...Well, I'm 38, and I'm a layout designer/copy editor for a small independent newspaper, so I guess that means I've grown up, but I've learned that "independent" means broke dysfunctional, and quite often you're the receptionist, janitor, courier, etc., all at once. I guess you have to be careful what you wish for.

    Actually, I love it most of the time, and I make my own hours, work at home if I don't feel well, take time off whenever I want, and can run out and pick up my kids whenever they need me. I really have a lot to be thankful for. They are helping me through my Carpal Tunnel/ulnar nerve issues, and have been very supportive through the mess of the last year as I was getting diagnosed with Crest. Plus I got a raise today!

     

    Love and blessings,

    Beth

  9. Hello,

    Yesterday my dr. told me I have carpal tunnel syndrome in my left wrist and tendonitis in my arm and elbow. It really isn't a surprise. I've been putting off telling her about the pain for months. I just didn't want to open that can of worms, and preferred living in denial. (I am surprised about the tendonitis in the arm. I assumed the pain was related to the wrist, or fibromyalgia, or something.)

    I've read of correlations to carpal tunnel and autoimmune issues, and would like to know if anyone else on this forum has experiences with it, although I know my problem is directly related to a soft-tissue injury to the same area two years ago.

    I just think, with my other issues, having a traumatic injury is asking for trouble later on. Of course, the fact that I work in publishing and spend hours a day at the computer doesn't have anything at all to do with it. ;)

    Anyway, I would be interested to hear of any experiences anyone has had would be helpful. Thanks a bunch,

    Beth

  10. Hi Gizelle,

    I've had several bladder surgeries, and just want to tell you to take it easy, don't overdo it afterward, and it will most likely change your life once you're recovered. One suggestion is to ask for a "donut" cushion to use during recovery. It can really help!

    I hope it all goes well for you.

    Beth

  11. WOW!

    Reading this forum is like looking in the mirror! I've had insomnia since my teen years. Don't know the relation, but it definitely is worse when I'm having painful flares, or the insomnia contributes to the flares. Very hard to tell. I've tried many meds, but my primary care physician put me on Rozerum just yesterday, so we'll see how that goes.

     

    Hope everyone gets a better night's sleep tonight!

    Beth

  12. Hello all,

    I saw a new rheumatologist dr. yesterday who told me that morphea only ever presents as one patch, never spreads, and that since I had numerous patches it couldn't be morphea, although I already had a diagnosis of morphea from a dermatologist (one of the rheumatologist's colleagues) via clinical exam and skin biopsy.

    What??? I've only read one story of a morphea patient that had one patch, all the others had many patches.

     

    They didn't look at any of the medical records I brought with me, and I was examined by a resident that had never heard of morphea. After the exam, the resident consulted with the rheumatologist in a different room and then brought him in to tell me that although I have raynaud's, telangiactasia, (both of which he diagnosed me with yesterday), GERD, fibromyalgia, intestinal issues, shortness of breath, IC, and can't open my fingers all the way, "There is no evidence of any autoimmune issue, and therefore no need for a rheumatologist."

     

    Needless to say, I am very confused. Anybody have any insight?

  13. Hi Irene!

    I have the exact same symptoms with shortness of breath and breathing out! Reading your post was like deja vu!

    I have been treated for asthma for the last five years, but never have had wheezing, just shortness of breath, sometimes when I'm "just laying down" other times when I'm walking up stairs, or just all day and night long, and the doctor's have always told me I have trouble exhaling, but I overbreathe a lot, and don't have low oxygen saturation. Using inhalers sometimes relieve the tight feeling I sometimes get, but they don't help the sob.

    Yesterday I went to my first pulmonology dr. My husband and I were really hoping he'd tell it is asthma, but unfortunately he doesn't think I have asthma. :( I will have to have several lung function tests next week, and that will tell us more. The good news is the lung dr. says if I have lung complications of scleroderma, it is still very mild.

    I really hope you have some answers soon!

    Beth

  14. Hello all,

    I'm gathering info in preparation for my visit with the Rheumatology Clinic at Stanford. I was diagnosed with Interstitial Cystitis 10 years ago, and have had numerous bladder surgeries, including stretching for shrunken, hardened bladder. Have any other sclero patients had similar diagnosis and hardening of the bladder? It sure would be interesting to know if there is a connection between the two. Of course, if there is, it takes forever for the medical community to come up with what seems obvious to the patients! :)

  15. Does anyone have trouble with drinking fountains? In the two months I've found If I try to drink anything when I'm not perfectly upright, I can't swallow it, or it goes down the wrong pipe. Could this be the beginning of swallowing difficulties? I have heartburn often and acid in my throat, but I have not had trouble swallowing until this.

  16. Hello,

    This is my first post and I have so many questions. I am in the process of being evaluated for systemic sclero, have a confirmed diagnosis of sclero via skin biopsy, but will see the rheumatologists at Stanford Hosp. in Northern California next month to determine whether localized or systemic. My ANA tests have all been negative, but was diagnosis withfibromyalgia 5 years ago, muscle/joint pain, have had shortness of breath for 5 years (flares, not constant) that is treated with asthma meds, interstitial cystitis diagnosis 10 years ago, episcleritis, gastro reflux, numbness in fingers and toes, the list goes on...etc.

    In august '06 I found a red flat lesion on right breast, and after many biopsies including romoval of quite a bit of breast tissue (orig. thought to be inflammatory breast cancer), I now have 33 lesions on both breasts and trunk, I have seen 8 doctors for the lesions, and finally went to Stanford where they found the lesions to be scleroderma.

    I am wondering if other people have these symptoms:

    Trouble getting warm again if body gets chilled?

    Shortness of breath that causes slight hyperventilation and sometimes can't walk across the room without shortness of breath, and then other days can exercise and do anything?

    Unexplained kidney pain?

    I think that's enough questions for one post. Any insight anyone has would be very appreciated. Thank you so much! :)

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