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About ladyhawke

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  1. I can relate to that, as I think a lot of us here can. I am doing very well now (for someone who has scleroderma), but when I was going through the worst of it, I had a family member and a friend who truly didn't "get it". Their comments hurt and I can't even say they weren't meant to hurt, you know? Some people say things and you can brush it off with "well, they meant well". But these comments weren't "meant well". (sigh). It's very sad that people can't love "unconditionally". I wish there was a way that we could erase in our minds what hurts us. But all you can do is take that and let it make you stronger within "yourself". Sending you big big hugs. I love your little emoticons - gave me my morning smile! I especially love this little guy.
  2. what a great idea!!! Thanks! I'm gonna do that....and you can also use those pockets on your hand when using the mouse on the computer....I find my right hand gets so cold when using the mouse,,,,so I'm gonna get me a pocket!!! :emoticons-line-dance:
  3. Hi Louise I was told to stay out of the sun and tanning beds because of the medication...prednisone and imuran. I think more so the prednisone. So if you're on that, I wouldn't think it would be a good idea. Cheers - Lisa
  4. Thanks Susie, I'm gonna put the name etc. in my purse and whenever I get to a used book store, I'll check too. :VeryHappy:
  5. So I contacted the publisher and this was their response: Thank you for your inquiry with AOTA. Unfortunately, the book is out of print and we no longer have any in stock. I googled the title and every site that I visited was out as well. I hope you find it soon. So if anyone finds a copy, maybe we could share it? I'm gonna keep looking anyway. - Lisa
  6. Thanks Lizzie, from what I've found out so far it is out of print and yes it's finding the old ones that is the problem. I've checked on Book Finder and Amazon and Chapters. I did find out the publishing company and have contacted them today. I'll post back if I find out anything. I'd really like to get a copy of it. I did find the ISBN number as well. This is the info on it if anyone is interested in searching: Scleroderma: Caring for Your Hands & Feet by Jeanne L. Melvin ISBN 1569000069 (1-56900-006-9) Softcover, Amer Occupational Therapy Assn
  7. Came across this while reading here about hands....would really like to obtain a copy of this as my hands are starting now. I know it's out of print, I don't have an ISBN number for it. Is it just a pamphlet or is it book? Anyone know anything about it or have seen it? Thanks - Lisa
  8. Thank you Suzie, I will. They rock in my book too! I can only speak for my own situation, it was almost a shock to find out that I was pretty much on my own, when it came to my healthcare.
  9. When I first got sick, I had a general practitioner who is a germaphobic (no kidding). This guy was so bad...he ran a walk in clinic and lost his license to write prescriptions for pain medication. There was a big sign in the waiting room. I went to him, they had to help me in and out, I couldn't walk on my own, couldn't roll over in bed etc etc. Legs and feet so swollen they didn't even look like feet. He wrote me a prescription for premarin and said, "well, your 50, it's menopause". He said he couldn't refer me to anyone. I layed in bed, "knowing" that I was going to die. Then my husband and I realized that no one is going to take you by the hand and walk you through this. It's just the way it is. You have to get off your butt and "handle this". My sister and husband got me out of bed and into emerg. Over the next year I was diagnosed with polymyositis, and scleroderma, not the one that effects the skin (so far), but the one that is internal. At one point my husband phoned a rheumatologist office and argued with the receptionist. She finally gave him an appointment for me but not for months later, he told her that I wouldn't need it as I'd be dead by then. When they faxed through my bloodwork that afternoon, she called back the next day and said, bring her in tomorrow. I was very lucky to have my husband and sister to stand with me and help me to be strong. You know how they found out I had the polymyositis? The doctor in emergency, his mother had it and he recognized the symptoms and did the bloodwork. So what I'm telling you is....get mad....(you have every right to be)... then get on the phone, explain to them what happened and TELL them that you need to get in and see this doctor. What happened was just a miscommunication, unfortunately, "you" are the one who has to correct it and if you don't get it started, it won't happen. So go girl.....this is your health that we're talking about here and THAT is important. Sending you much love and many hugs - Lisa
  10. That is just amazing!!! Congrats to you and thanks so much for giving us all hope! :emoticons-group-hug:
  11. I would so encourage everyone to do this, if not on your computer then in a journal, you can always photocopy. Don't leave out anything. Write down your thoughts about your visits as well as the important things like advice etc. On one of my swallow tests, the technician, told me a few things that he thought and I put that in. And when you get home from whatever you went to, get a tea, get relaxed and if you can, do it then, while everything is still fresh in your mind. There were times when I didn't feel like doing it, but I'd just say to myself....10 minutes and it's done. I used Microsoft Publisher and just kept adding pages to it as I went a long. I can't even imagine filling out those papers without it. It's the only "good" thing that came out of this. :emoticons-group-hug: Cheers - Lisa
  12. Hi Summer I don't know where you are in the world but I will tell you what helped me enormously here in Canada. When I first went off sick, I worked at a tire plant for almost 20 years as a tire builder. I had 1 yr short term, and 2 years long term disability. When they said that I couldn't go back to work when that ran out, I applied for a disability through the company as well as a government disability. I was told that only 3 people had gotten the company one in the 20 years that the plant has been here and that the government would definitely turn me down so be prepared to reapply. Well, when I got the forms from both, I was overwhelmed by them. There were pages and pages and they wanted dates, specifics, etc. etc. It had been 3 years since I first went off and I just couldn't imagine how I could come up with all the information that they wanted. My rheumatologist filled out his part and I went through and filled out as best I could "my" part. But when I first got sick, I had no idea for a year what was wrong with me and on my computer I kept a log. Every time I went to the doctor, I came home and put the date, the doctor, what the appointment was for and what the doctor told me, what drugs they gave me etc. Every test, I did the same thing and just added my own comments like "this test was barbaric, and I **** that I'll never have to go through it again", what the technician said etc etc. So I printed that log out, It was about 20 pages. Every question on the disability form that I came to that they wanted details or something I wasn't sure about I wrote "see attached papers". Then I wrote a cover letter and I said, "I am overwhelmed by these questions, when I first got sick, I started a log and kept entries with every appointment, every doctor and every test that I went through, every drug that I tried etc. I hope that this is acceptable, should you need to talk to me about any of this, please feel free to call me anytime" Well, I fully expected to be turned down, but I got no phone call from anyone and I got both pensions first time around, no questions asked. I was so thankful that I kept that log. Between my doctor's report and the log, I know that is what put it through. I feel so fortunate as I know what others have had to go through. I hope your experience turns out to be as good as mine was. We have enough on our plates without the stress of going through this as well. Lisa
  13. My doctor told me to take the max for vita D, and I tested low for B as well, they said it was because of the drugs. Prednisone and Imuran. I take both vitamins now and have been ok. - Lisa
  14. I meant to add to my post that I too had hair growing everywhere that it shouldn't and not where it should. My sister came up to me one day and said you have dirt on the side of your face, she was shocked when she went to wipe it off and it was very fine hair. I shaved it off after that. My doctors said it was one of the side effects of the prednisone. I grew hair where I shouldn't and lost it where I should. I didn't have to shave my legs for a very long time as I lost it there too. Now that I'm off it though, everything is back to whatever "our" normal is....sigh....
  15. Hi Lynn I don't know what dose prednisone you are on. When I was on prednisone, it was a very high dose for 2yrs. I lost most of my hair from that. Once I went off the prednisone, it came back and I'm really happy with the way it came back. I bought a wig and would suggest that to anyone. I'm not vain whatsoever, but when I lost my hair, I wouldn't go out. I know that people don't think before they speak and they really don't mean it to sound the way it does to us, and I know just how you feel. I know for me it was the medication, and I know that if I ever get bad enough again, that I have to go back on the drugs, well, I have my wig still and to know that my hair "will" come back again, it will be one less worry. I hope the case is the same for you. :emoticons-group-hug: - Lisa
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