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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, and I'll bet almost everyone on this forum has felt scared at some point so you are definitely not alone. I have found hypnosis particularly helpful, or guided imagery, especially we feel anxious. Go to your app store on your phone and type in hypnosis and a lot of free and low cost ones will come up. I'm glad you asked for help. This is sometimes really hard for me. Best, Nancy
  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 buys us 6-9 months give or take. So I am hoping for a miracle but preparing for the worst,. We won't let her suffer. Sad post, sorry. The three other dogs are aware somehow that there is something wrong with her? She's our little alpha, Don't know what I'll do without her,. Animals are just like family members, aren't they? Fondly, Nance HG
  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 thing is leaving me short of breath,. You can never predict these days, and maybe tomorrow will be better. Or not. I should be grateful that I made it to 63 and some people feel like this much younger. Just in a mood,. Thanks for listening and hope to get to know you all better., I have been a trauma psychologist for 30 years so if I can ever help anyone out with resources, please let me know. Nance HG
  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 other scleroderma drugs people have found helpful. Nancy
  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 diagnosis. Try as many doctors as it takes. It took me three!! I'm very lucky because I live in Baltimore and close to the Johns Hopkins Scleroderma Center and will be given a full workup there in Dec. just to give my dr. and I another opinion. It has made a huge difference to be on an immunosuppressant (CellCept) in terms of feeling less lousy. I sure hope someone helps you soon, but please don't give up. I have days like yours when I do absolutely nothing, but we are sick, and sometimes that happens to sick people. You do as much as you can and that has to be good enough, Sending love and healing vibes, Nancy.
  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 being totaled. I have found mild swimming really helpful and might look for a gym with a pool for winter (we have our own pool now). I often struggle with feeling useless, What have others found to replace their prior physicality? Some days I literally do nothing, (Not motivated to do housework), Its a really bad feeling but sometimes I just can't push through it. Luckily I have a gem of a husband who really gets it, Thanks and nice to find a forum of people who understand, If I can ever be a help about especially psychological symptoms, please let me know. Nancy HG
  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 daily and contact her immediately if it spikes, as apparently this can prevent kidney failure. So I am managing. Depressed, made worse by my little Chihuahua having just been diagnosed with lymphoma and given only a few months. One of my questions is does anyone suffer from bone crushing fatigue with days when they can hardly hold their head up? This is my worst symptom and I am only working two days a week as that is all I can manage. The fatigue never leaves or lessens much. Anyone have it like this? How do you cope? Fortunately I live a half hour away from Johns Hopkins, who have one of the best Scleroderma Centers in the country, so I will undergo a full work up in the Fall to provide my rheumatologist and I with another opinion or additional recommendations. Glad to find this forum for support, Best Nancy
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