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Nancy HG

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About Nancy HG

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  1. Hi all, I'm scheduled for a full work up here in Baltimore at Johns Hopkins Scleroderma Center. Has anyone had one of these? They sent me six pages of paperwork to fill out for a Dec. consult. My rheumatologist and I are wanting them to just give us a second opinion on how we are approaching my treatment, I have four kinds of SS and also test positive for Mixed Connective Tissue Disorder. I'd be interested in hearing about others' experiences with Hopkins. Thanks. Nancy HG
  2. Hi Michelle, I get scared all the time. It comes, it goes. I think having a good bunch of folks who understand your fear really helps. I have the esophageal thing, intestinal, lung, and kidney involvement. But I've had symptoms gradually over the past 20 years. I do a lot of soothing things for myself, like coloring or painting, writing, reading, since I've got so much fatigue that working physically is pretty much out. It's hard to stay positive when you're scared, and yours may be a lot more limited than mine, I hope it is. You're brave to put your scared feelings out there
  3. Quiltfairy, So sorry about losing your mom. Sounds like she put up quite a fight. Losing my mom, although 13 years ago, was the hardest thing I've ever had to deal with, And I've had some really challenging stuff - I hope your loving memories serve to comfort you during this next period of time, Warm thoughts, Nancy HG
  4. So sorry about your loss of Toby! They are just like family members and the grief is gut wrenching! I've lost two and my little chi has just months of life, Don't even know how I'll get through that, But I'll jump off that bridge when I come to it,. Regards, Nance HG.
  5. Ah is it okay to include coffee, ice cream and pretzels? And reading or coloring or listening to music. I usually feel better in the am, then tank around 3-4. REALLY tank! Not so fortunate for my later in the evening patients (I'm a psychologist). I write a lot, Sometimes a letter to a friend who sends me letters back the old fashioned way, but often just whatever pops into my head, And does everyone by now know that you can get some guided meditations at your app store? All of that only sometimes works. Nance HG
  6. I have four little rescued, all Chihuahua mixes, They are my therapy on bad days. So much fun!! Unfortunately, the second week after I was officially diagnosed. with scleroderma my love of my life little chi named (aptly) Princess was given the dreadful diagnosis of the aggressive, t cell type of lymphoma, Without treatment she would have had only weeks (I literally came on in two weeks), so we're all in for the (gulp11$12,000) treatment. Even if she does go into remission from the chemo, ( and she's doing marvelously after two treatments, you'd never know anything was wrong) it probably
  7. Hi all, It's just so nice to meet others who have scleroderma. I just want to rant, Having awful Saturday, in which fatigue and malaise allowed me to do not one single useful thing. I have a lot of those days. Want to pluck my eyebrows out, one by one!! Husband who works all week (I can only do 2 days now) is stuck doing all the house work, leaving me feeling guilty and useless. Anyone relate? People who don't understand fatigue say "Cant you just push through it?" which sounds a lot like "Suck it up:". No, I can't, My body is made of marble and I can hardly move, Doing any little th
  8. Hi Joelf, Is the echocardiogram the only measure of pulmonary hypertension? Seems like that's pretty late in the game to detect it? Thanks, and this forum has already helped me enormously! Nancy HG
  9. Thanks Joelf, I am actually feeling a bit better on increased CellCept (3000 mg which will go up to 6000 and Plaquenil ) and I am learning to live with it. Although I'm still too fatigued to do much and sad about that. I take an antidepressant which helps too. Are there other meds that are commonly prescribed for systemic sclerosis? I have thus far got interstitial lung disease, intestinal and kidney involvement. Always a little scared about what's next but glad to finally have a clearer diagnosis. Thanks for responding and I would very much like to hear what othe
  10. Hi Janet, I am a systemic sclerosis patient and also have Mixed Connective disorders, both of which are "very rare". I know how it is, believe me, to feel absolutely awful and have no one understand why. I also know how hard it is to go on, I, too spent years without a diagnosis cause my blood work kept moving all over the place. (I was recently diagnosed by blood with scleroderma and MCTD including intestinal scleroderma). The difference is I found another rheumatologist who believed my symptoms and thought it was just a matter of time till I had bloods that matched the diag
  11. Thanks Joelf, The fatigue section was highly useful and very validating, most of all. You look fine yet feel like someone hit you with a bus!! I guess you just learn to live with it. I was a really physical person prior to scleroderma. I had a horse that I had to sell due to physical limitations and overall fatigue and malaise. I'm really struggling with the shortness of breath and fatigue (interstitial lung scarring) leading to my being so lethargic. They tell you to exercise but exhaustion after exertion is one of the symptoms,. When I even mildly exercise I go back to b
  12. Hi all, I am a psychologist from Maryland, and have had autoimmune symptoms for many years that went undiagnosed, so I get how crummy that feels. I had been diagnosed with Mixed Connective Tissue Disorder, which I still have. Last month I was diagnosed by blood work with systemic sclerosis as well as skin scleroderma. I'm taking CellCept which will be increased from 1000mg per day to 3000-4000 based on kidney functioning, I have interstitial lung disease, intestinal sclerosis, and kidney involvement. I was told by my (great I think) rheumatologist to take my blood pressure da
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