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whirlway

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About whirlway

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    Silver Member

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  • Location
    Washington State
  1. Cellcept

    No, he was out the day I called. I hate the way I have been feeling, brings back too many bad memories. I see him in June, after I get back from my vacation. Hopefully that will make me feel better. Thanx. ;0)
  2. Cellcept

    I have been taking Cellcept for several years now and lately have not been feeling very well. I have had to do several prednisone tapers. (ICK)!! I am wondering if anyone else takes this drug and has found it to be less effective after a period of time.
  3. Can you write on your skin

    In my younger days before a hysterectomy, every time I would have my period, my fingers would all turn black from my gold jewelry. I always thought it was strange, but after no more periods, no more black fingers. We are a strange lot. Lots of weird things happen to our bodies that no one can explain. ~whirlway
  4. Meeting one of our own next Monday

    Hello all, I have been away for quite some time. Just wanted to say that Sweet, is the sweetest! We had a great lunch. It was so nice to get together withsomeone who totally understands your situation. Sweet, you know my thoughts are with you and I am excited about getting together again soon. Hope our appt dates work out. ~whirlway
  5. Massage Therapy

    Just my two cents, but you should always tell your therapist if you have any disease. My therapist, the 4th one, has done a lot of research on sclero and I have given her a lot of info also. When you get massage, a lot of toxins are released in your body, and that is why you should always drink a lot of water after a massage to cleanse the toxins out of your body. There have been a few times that I have either gotten a headache or gotten sick after massage, and it was probably my fault for not drinking enough water. My first therapist was my daughter, and she was the best, but unfortunately, she moved across the state, so I had to find another one. I finally found one that doesn't make me feel sick and makes me feel better after a massage. One gal made me so sore no one could touch my back for a week. That one didn't last long, that is for sure. And she knew that I had sclero also. Here's to better days for all of us. ~whirlway
  6. My Sister, Jodi

    Thank you for all your kind responses. Jodi did see the dr and really liked him. He said she was an excellent candidate for a lumpectomy, because he said they don't do mastectomies so much any more. He also said he will know more once he gets inside. The guy was very kind to her, which I really appreciated. She should be finding out today when the surgery will take place. Since she has breast cancer, she automatically qualified for medicaid, so she doesn't have to worry about finances, she doesn't have insurance, which is another long involved story. Also, after the surgery, she will need treatment and when she goes to the city for the treatment, which is for 5 days @ a time, she will get free lodging and I believe he said meals, so she won't have to travel back and forth from home. Also, he said the treatment won't affect her kidney, which has also been a big worry for us. Yesterday she also found out that she will now be getting ALL of her meds for free from now on. I cried when I found out about all this stuff. It's a terrible thing she is going through, but she really got some fantastic news as well, what with the lodging, drugs, etc. Someone is certainly watching out for her, that is for sure. just a little side note, I had to go back to the opthomologist yesterday, due to the horrible pain in my shingles eye. Now I am wearing a gauze patch. It is very attractive, especially the way the dr put it on. People asked what was wrong and I just told them I forgot to take off my halloween costume. lol Thank you again and please continue to keep Jodi in your thoughts. ~whirlway
  7. My Sister, Jodi

    Some of you might remember when I talked about my sister, Jodi, who had brain surgery in July. She is recovering from that pretty well, there are still some things that are difficult for her to do. In Oct. my hubby and I moved her across the state so she could be closer to family. Well, yesterday we found out that she has breast cancer. She is seeing an oncologist today to see what he has to say as far as treatment is concerned. She is a fighter. She is also a diabetic and had a kidney transplant 23 years ago, which must be some sort of record. Please keep her in your thoughts today and send good vibes her way. Thanks for your support. ~whirlway
  8. Shingles Update

    I have been dealing with shingles for over a month now. I don't have any more sores or scabs, so that is good. I still have a great deal of pain and itching on my forehead and scalp, but the worst part of this deal was when the shingles went into my left eye. That is the reason I have not been very active on the forum for a while. I can't see very well and the light really hurts my eye, so I have to wear dark glasses in order to do anything on my 'puter. I have been through 4 different types of drops, I am still taking two of them, with hopes that my vision will return. I have been to the optho guy every week for a month now. He keeps telling me that my vision will come back, but may take some time. The itching is driving me crazy. My primary care physician finally gave me some anti-itching pills, but I can only take them at night, as they make me pass out. I had to stop taking cellcept, because my rheumatologist said I wouldn't heal as fast, so of course he increased my prednisone to 10 mg per day. Hopefully I will be able to start weaning down to 5 pretty soon. Sorry this is so depressing, but that is pretty much the way my life has been the past month. If you haven't asked your dr about the shingles vaccine, please do so. I really don't want anyone else to have to suffer from the shingles. ~whirlway
  9. Shingles

    Thanks for all the kind words of encouragement. Yesterday, when I was at the doctors, he kept saying how sorry he was and wished he would have thought to give the vaccine to me. He said that if you have a 'compromised immune system' you should have the vaccine. Well, we all know that hindsight is always 20-20. :) I would reccomend talking your doctors about the vaccine, either by phone or your next appt. I wouldn't wish this pain on my worst enemy, not that I have any, anyway. lol Don't know of any. I am seeing the optho guy on Monday, due to the fact that it is so close to my eye and my eye feels like it has sandpaper in it. Hopefully everything there will check out ok. I did get a disc of pics from my son this am and went to a local store and had some more up to date pics of my grandson made. Isn't quite the same as holding the little bundle of joy in my arms, but it's better than nothing. My favorite so far in Nathaniel asleep in his bathtub. I guess he wouldn't stop crying, so they put him in the bath and bingo, sound asleep. Here's to better days for all of us. ~whirlway
  10. Shingles

    So how many of you out there have had shingles? At least I figured it out and started treatment in less than 24 hours. I can't believe how painful it is, I have it on the left side of my forehead and into my scalp a bit. Of course it had to be on my face. Hopefully it won't leave any scarring. It is very close to my eye, so I have to call my optho guy first thing this am. What a bummer! Oh, and I get to start on 40 mg of pred this am also. Joy, joy. Only for three days and then start a taper, but it will take several days if not weeks for me to get from 10 to 5. It usually does. I hate that stuff. The big reason I hate this so much is that my son and his wife just had a baby boy last week, and now I won't be able to see him for quite a while. That is the real bummer. I love that little guy. I got to be in the delivery room when he was born. What a thrill. Here's to better days for all of us. ~whirlway
  11. Am I A Wimp

    Jaxs, you are not a wimp. I completely understand what you are going through. I tried metho also, and it made me so sick. I took it for a couple of weeks, thinking it would pass, but I became so ill I could barely get out of bed, so no more metho for me. Some people cannot take certain drugs. The next drug I was given was immuran. Tolerated that well and took it for a couple of years before it became ineffective. Now I am on 2000mg of cellcept. Good luck. ~whirlway
  12. When I was a kid, many, many years ago, my uncle used to tease me and call me Whirlaway after a racehorse, because I could run so fast. When I first set up my e-mail accnt, I tried to get whirlaway, but it was taken, so whirlway it was. Too bad I can't still run that fast, I can't run at all now, due to the many surgeries I have had. I do have another handle but don't use it much and not here at all, it is Mamamariner. My kids call me that due to the fact that I am a complete and total Mariners baseball fan. My, oh, my! People in the pacific northwest should understand that. d:0) (If you look at that symbol sideways, it is me wearing my baseball hat! Maybe I should have put a frown on the face since they were eliminated yesterday, but hope springs eternal when it comes to baseball, there is always next season. :D ~whirlway
  13. Plaquinil

    Maddy, sorry to hear about your pain and the amount of pred. you are taking. I tried plaquinel, but got no relief from it, and I was too worried about my eyesight to want to try it any longer. I was probably about your age when I tried it. Advance 20 years and I was still on 20mg of pred. Finally, I said this is enough, I have to get off this stuff. The first thing we tried was methotrexate, thought I was going to die, it made me so sick. Then I found my rheumatologist, one of the best things that ever happened to me. He put me on immuran and started the weaning process. It took 8 months to get down to 5mg, which is where I am today. I tried to get all the way off, but just couldn't do it, due to the fact that my body just won't produce enough natural pred. anymore. I felt like I had been given my life back to me. I lost 80 # in 6 months, didn't feel like Jekyl and Hyde, etc. True, I still have pain, but nothing like before. At least I can bathe myself and dress myself, whereas before I couldn't . At present, I am taking 2000mg of cellcept, the immuran stopped being effective, hence the change of drug. Life isn't perfect on cellcept, but it's a lot better than being on prednisone. I do take extended release pain medication also, and for the most part everthing is under control. Of course we all have our moments too, but that is just part of our disease. If I can have as many good days as I am having, I will take the few bad days that come in between sometimes. Please feel free to send me a PM if you have any questions. I know what you are going through, as I said, I was about your age and had three small children @ the time. They are all wonderful, young adults now. I worried about that also. :) Here's to better days for all of us. ~whirlway
  14. Sam, sorry you're not feeling well. It must be catching. We drove across the state to see my sis and a couple of our kids, and guess what. Got the icks. Everyone went to the horse races yesterday and I stayed home in bed. Oh well, that's the breaks I guess. We win a few and lose a lot. Makes us appreciate the good days all that much more. Here's to good days for all of us. ~whirlway
  15. Update On My Sis!

    What a difference a few hours can make. My sis called me @ 7:30 this am and told me she was back in a different hospital, a place where I am sure she will get good care and they won't try to kill her. Come to find out, the other place had put her on meds that could cause another seizure and also cause the horrible headaches she has been having. I have complete confidence in this dr. He has been her dr for a long time and it is too bad she couldn't have gone to the new place first, but she had no choice where the ambulance would take her. And to top things off, she didn't go by ambulance this time but did ask her significant other to take her to the hospital. He said he just didn't have it in him to drive her there, so she called her best friend and she took her. Needless to say, I am furious withthe guy, but won't say anything, not wanting to make matters worse. Whew, I just have to get this off my chest, and channel what little energy I have left into something positive for my sis. We are traveling there this week-end, so will make more plans to get her out of this mess. We, my sis and I, are thinking assisted living until she can move in with us. At least that way she won't have to be around the SO. Thanks for listening to me and my rants, and for your continued support. ~whirlway
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