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Karenlee

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Posts posted by Karenlee


  1. Wow Eileen, that sounds like some trip! I'd have passed out for a month if I did all that. Glad you had a good time and got to see a lot of sights.

    I noticed you said you are originally from Long Island. What town? I live there and was just wondering. I grew up in Plainview, and now live out in the boonies (Ridge) Lol.

     

    Karen


  2. Cheryle,

     

    I have an abundance of people to choose from to bring with me (hubby, mom, mom inlaw, sisters) and they offer all the time, but I am an odd bird. When I have people with me, it makes me more nervous and jittery. I think because I am worrying about them being worried, also seeing concern on their faces makes me feel worse. I know it's silly but I'm just hard wired that way. I have the need to do things on my own. Plus it gives me the opportunity to present the info to them the way I want to, in a less intense manner. Again, I know it seems silly and nonseseical (is that a word? lol) but I never claimed to be rational :P

    Thanks for the advice though. Maybe one day I'll be relaxed enough to have someone with me.

     

    Karen


  3. Stape,

     

    There are medications for Raynauds, different people take different things but my Rhumetologist reccomended Viagra when the winter rolls around. I have heard time and time again to treat each Raynaud attack as an emergency, as in getting the hands warm and blood flowing ASAP. Heating pads, running them under warm water, gloves, windmill arms. Whatever it takes. I don't mean to be a Debby downer but it can cause finger ulcers.

    My first experience with CREST was the Raynauds and severe reflux. The other symptoms came later on so I suggest you have all the testing done that you can get. You may very well have only reflux and Raynauds, which I hope is true, as they are manageable, but things can strike at any time so please keep an eye out for any new occurances.

     

    I was told I have cREST with limited Scleroderma, and no calcinosis. Also UCTD. Even at a mild diagnosis, I have had chest CT's to check for lung fibrosis, x-rays, hand doppler, echocardiogram, scheduled PFT and thyroid doppler. So my point is, best to be safe and tested just incase.

     

    I hope that answered some of your questions. I'm sure others have some good advice too.

     

    Karen


  4. Peggy that's too funny that your 70 lb dog plops right in the middle of you two and you can't move the covers Lol. Shelly has a similarly hoggish habbit of laying across the bed horizontally on top of the covers so neither of us can lay down with our legs stretched out or get under the covers. And of course, I don't dare disturb the queen bee. I just don't have the heart to move her away. :D


  5. Well I had my follow up with my Rhumetologist today. Everytime I go, (it's an hour drive each way) I have an arsenal of questions in my mind and have iron will that I'll ask all necessary questions, talk about recent changes, blood work, etc. But somehow, for some unknown reason, once I'm sitting in the exam room I'm like a deer caught in the headlights and all I can think of is getting out of there as soon as possible. :huh: I think a lot of it has to do with denial and anxiety. I really don't want to know everything, because most of the time it's bad news, so I kind of get into the mindset that I'm fine and I just need a refill for my script. I used to walk in with a list on paper so I wouldn't forget anything. Now I just want in and out at lightning speed. I know that's not the right approach and I just drive back in a daze thinking of all the things I missed.

    Thankfully, they know enough to ask ME the questions, and leave no stone unturned. I'm scheduled to have a dopplar on my thyroid gland, and a PFT test in July and a consult with a pulmonologist. I was told that my echocardiogram came back fine (whew) and had more blood drawn for ANA etc.

     

    Anyway, just wanted to share that for some reason. I'm not proud of it but that's the way it went today. I'm just happy to be home and not have 3 difft doctors poking, prodding and touching me.

     

    Karen


  6. Haha I have no idea what's up with her. Maybe like you said, I'll slip her one of my Xanax before bedtime :P

     

    That's great that your doggies love you up like that. Is that the best feeling or what? No matter how bad a day your having, they just love it all away. :)

    I'd love to add a dog (or three) to the family but I just don't know how she'd handle it. She does rule the roost after all. Lol


  7. Ugh that cat of mine :( I love her to peices but she's gotten into this awful habit lately of waking up around 4 am and jumping all over the furniture, knocking things down, walking right across my chest. I feel like I haven't slept in a week.

     

    Just thought I'd share, since I'm sorta in a fog today from it. :P

     

    Karen


  8. Hi Suzi,

     

    When you say they can be taken care of, you mean laser treatment? I asked about that to my doctor and he said the likelyhood was that it would not work, and that even if it did, they would return. Maybe you know of a specific type of laser treatment that does work? If so, I'd love to know about it.

     

    My dermatologist (the one that I never went back to) told me to use vitamin K cream on them (I think it's used for bruising so similar effect on the tangs). I used it religiously for 3 months and nothing. So, just loads of base for now Lol

     

    Karen


  9. Eileen,

     

    Glad to see you aren't giving up on a diagnosis although I totally understand your frustration. You just want someone to say "this is what you have" and "here is our plan of action", but unfortunately with this disease that is usually not the case.

    Maybe if you go back to the same Rhumetologist and leave still feeling uneasy about his knowledge and or results, you can find a different one. Don't ever settle.

    I had a similar experience with a dermatologist and knew from the moment I left his office that I would never go back to him. Just keep plugging away until you hit the right one.

     

    Good luck.

    Karen


  10. "Mom....all gone. Food goes down."

     

    Well that brought tears to my eyes. (in a good way) :) I'm so glad for him that it worked. What a releif that must be for you, I can't even imagine. I hope that over time the rest of his pain will go away quicker. I'm sure it will since he's just started treatment and this stuff (as you know) can take a while to get in the system and do it's job.

     

    Karen


  11. ez62,

    Sorry to hear you didn't get very far with this recent visit. I'm not too familiar with your condition, but it sounds to me like you 1. Need to find a more competant general practitioner and or 2. Need to get to a Rheumatologist.

    It frightens me to no end that a doctor (especially fresh out of med school, since you said he is young) can actually beleive that scleroderma only affects the skin. That would be a huge red flag for me to find someone else.

    Again, I don't know your history or condition, so this is just what I think from reading your post.

    Karen


  12. Hi Smanda,

     

    I didn't have the actual test with the instruments, but my rhumetologist looked at my fingers and I guess they were bad enough that he could see with the naked eye that I had the capillairy abnormality. I would suggest you have the test done at the specialist unit regardless. Any test that can help with diagnosis is well worth it.

    If he/she feels they saw enough to send you, then you should go. You may very well not have any abnormal capillaries but it's just better to know for sure.

     

    Good luck.

    Karen


  13. Thanks for the explination Gidget. I now understand what you mean about the bell curve and the waxing, waning etc.

     

    I just have to figure out what point I am at in that curve. I don't really know when to say I had skin involvement. When I was 19, is when my doctor said my immune system issues started ie: hair falling out, thyriod shutting down. It was not until about 3-4 (late 30's) years ago that the Raynauds started which is part of the CREST syndrome. About 2 years ago I noticed the tangs. on my face. The actual skin involvement started early this year. And the UCTD I noticed for the first time about 1.5 years ago, but not sure exactly when that started for sure. Sorry for rambling and babbling but it's a tricky puzzle to peice together. B)

    Either way, I am hoping that the Plaquenil will stall the disease if I am in the bad stage.

     

    Karen

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