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Everything posted by whirlway

  1. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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
  16. She finally got out of the hospital after 34 days. She is still going to physical and ocupational therapy, but is doing much better. She doesn't have to use a walker any longer, but is using a walking stick our dad made for her a long time ago. She said it really helps getting in and out of the car. Thank you all for your 'good thoughts' during this difficult time. She still has a ways to go to get back to 'normal' after the brain surgery, but for the most part has a good attitude. She gets a little crabby withme, but at least she is 'still above the sod' as she puts it, so that is ok by me. There were times when I wasn't sure she was going to pull through, but she is a fighter, that is for sure. ~whirlway
  17. Shelly, thanks for clarifying the thyroid issue. I knew I wasn't supposed to take the calcium withmy am meds, but couldn't remember which med it was. :rolleyes: I have am 1 meds, no food, am 2 meds withfood, and pm meds. My hubby doesn't understand how I keep them all straight. I found a small plastic three drawer container and keep my meds in it according to the time I am supposed to take them. It works pretty well for me, hopefully I don't need to add any more drawers! Last month most of my meds had to be re-filled at the same time. I don't know many people who get their meds in a large paper bag. WOW, is this off the subject or what. But that is how it is, one thing can just lead to another in the many chapters of our lives. Here's to a better day for all of us. ~whirlway
  18. Patty, I was having those problems quite a while ago, and went to physical therapy. They did hot wax treatments on me plus exercises, and also made casts for both arms that I had to wear every night. They were half casts that I wrapped on with ace bandages. Not too comfortable, but it did the trick. Haven't had and problems lately. Good luck. ~whirlway
  19. Peanut, sorry it has taken me so long to get back to you. I had been taking large amounts of prednisone for about 20 years. When a person takes 20+mg per day, it will suck the calcium right out of your system. I wasn't made aware of this and as a result have osteoporosis and have had one compression fracture in my spine, plus I have had three teeth practically disintegrate, but the dentist was able to salvage enough of them so now I have three beautiful gold crowns. Luckily they are in the back and don't show too much. When I first started seeing my rheumatologist, he ordered a bone density test and found the osteoporosis. Now I take a calcium supplement (1800mg per day), fosamax once a week, and didronel every three months. The osteoporosis will never go away, but from the intense treatment it hasn't gotten any worse. So, as a warning to all of you who do take prednisone, please talk to your doctor about the drug and the side-effects and about taking calcium supplements. Also, ask for a bone density test, and not the one where they just stick your foot in a boot. It doesn't hurt, or take very long, and could be a big help in the long run to keep you from getting osteoporosis, which is a big, huge pain. (Seriously, I would rather have a baby than another compression fracture, they are very painful. I was in the hospital for 4 days on a pain medication drip) Also, when you have any dental work done, the dentist should be giving you antibiotics before any proceedure, even cleaning your teeth, due to all the bacteria in your mouth. ~whirlway
  20. Jen, can't remember if you have been on prednisone, but that will cause a lot of dental problems. I haven't had near the problems since I got off pred. (well, down to 5 mg a day instead of 20) and started taking cellecpt. Just make sure you are taking plenty of antibiotics, that is very important. Good luck. ~whirlway
  21. Barefut, I took 20mg or more of prednisone for about 20 years. When I finally found the rheumatologist of my dreams, he started my taper and it took over 8 months. I never could get completely off, I will probably have to take 5mg a day for the rest of my life, due to the fact that my body just can't or won't produce it on its own. Every time I went below 5 a day I started getting the body aches, muscle stiffness, etc. So he decided to just keep me on 5. I tried very hard to get off all the way, but am content with the 5 a day now. I also take 2000mg of cellcept. Thank goodness for insurance, or I wouldn't be taking that. You know how expensive it is per month. Pretty rediculous if you ask me. One of the great side-effects of getting off the pred was losing 80lbs in 6 months. I went from over 200lbs to a somewhat normal appearance. Had clothes in my closet from size 24 down to size 10. Keep us posted on how you are doing without prednisone. More power to you if you can stay off. You certainly don't want to get the dreaded osteoporosis from too much prednisone like I did. Those compression fractures are very painful let me tell you. The last one I got I was in the hospital for 4 days on a pain medication drip. Not pleasant at all. ~whirlway
  22. Thank you all, for your support. I got home late last night, finally felt like I could leave Jodi. Sheryl, Jodi doesn't have a husband or children and we were planning a move so she could be closer and then she had the seizure. So, I am her main support. I knew I needed to come home, just to see my family, hubby and kids. I did get to see my other kids that live on that side of the state, but in a bad situation (hospital setting). Jodi is on an insulin pump and does very well with it, but no one in the hospital seems to understand it. Several doctors have asked her to turn it off so they can monitor her diabetes with just shots. She told them no and for them to try to turn off their hearts to see how long they would live. The pump takes the place of her pancreas, which doesn't work in her case. We finally got an endocrinologist in there Sat. that really seemed to understand what was going on and got the nurses and other doctors to get the big picture. That was a relief. It's difficult to work withsome doctors when you know more about your situation than they do. I actually thought they were going to kill her until the endo doctor showed up. He is a personal friend of Jodi's endo doctor and came to see her because her regular doctor is on vacation. He was our knight in shining armor on Sat. that is for sure. It is going to be a long road to recovery for Jodi. She won't be going home for some time, but will be moved to a transitional facility when she is able to do at least 3 hours of physical therapy a day. I don't know if this is making any sense, it's the middle of the night, I can't sleep, too worried about Jodi and wondering if I made the right decision to come home, but I needed to talk about the incompitance(sp) of some of the people that call themselves doctors. Again, thanks for your warm words of support and please continue to keep Jodi in your thoughts. ~whirlway
  23. Haven't been around a 'puter lately, due to the fact that my sis has been in the hospital since a week ago Tues. She had a grand mal seizure and was rushed to the hospital and they ended up doing brain surgery after they got her stabilized. I drove about 400 miles so I could be with her during the surgery, etc. Her recovery has been very slow, she is also a diabetic. The doctors said she had a lot of fluid on her brain, so they installed a shunt so it could drain properly. The doctors also said it was a good thing she had the sizure, due to so much fluid build-up on her brain, and that she would maybe have lasted a couple of weeks longer. Yesterday, she had another seizure. It has been a long haul, with not very much good news. She was finally moved from CCU late last night, (the hospital needed that bed), so now she isn't getting as good a care as she was. I have been spending every day by her bedside, she is all the family I have left. The really hard thing about this is that my brother had exactly the same thing happen to him and the brain surgery was the beginning of the end for him. He only lived a couple of years after that. So, think good thoughts for both of us, especially Jodi, my baby sis. I need some good thoughts also, as I am starting to wear down. Sitting in the hospital is starting to take its toll. Thanks for listening. ~whirlway
  24. Celia, I can remember those days, not pleasant at all, wondering if things would ever be normal again. Everyday some new symptom would show up while another would be gone, and I would be thinking what did I do to deserve this. In and out of the hospital. And then the doctors, sending me from one to another, passing me along either because they didn't know what was wrong with me, or they thought there wasn't anything wrong with me or that it was all in my head. Keep in mind, this was in 1982-3 era. Not much was known or publicized about lupus, let alone sclero. I finally flew over 300 miles to a 'good' facility and in '85 was given a diagnosis of lupus, which I didn't even know what that meant. There were times when I just wanted to give up, but I knew I had three small children, under the age of 5, who needed me, and my hubby, who needed me, lumps and all. Today, I have Crest, lupus, no thyroid, Raynaud's, sjogrens, osteoporosis, fibro, gerd, and probably something I have forgotten. I can't remember what it's like to have a painfree day. Today, I have three of the best doctors anyone could want. Two in my hometown, my primary care physician, who is an internist, and a gastro dr, and my rheumatologist, who is approx 80 miles away. I take drugs before I eat in the am. I take another handful after breakfast, if I can get it down, and then another handful before I go to bed. And extra pain meds when I have those breakthroughs. Today, I actually feel lucky because I feel better than I did in '85 due to the good doctors that I see and the new meds that are on the market. It didn't happen overnight, it just kept evolving. Your doctors will get it figured out, you will feel better, but your 'normal' will never quite be the same. It will get better, sometimes it just takes time to get it all sorted out. Try to stay focused, figure out what is really important to you, and don't overdo . It's tough, we've all been there, and that is why we are here today, to try to give support to people like you who are just joining the sclero 'club'. It's not a membership that any of us wanted, but I have tried to make the best of it, and it has taken me a while to get to where I am today. We all get by with a little help from our friends. Hang in there girl, it will get better. In the meantime, hang out here! ~whirlway
  25. Just went for a tune-up and don't have to go back for 6 months. That is the longest my rheumatologist has ever let me go in between visits. The only bad news I got is that I have to start PT on my knees. They have been killing me for some time now, but it's not the joints, so that is good. I was fearing injections, but I just have to start some muscle-strengthening for my kneecaps. He did get a tad bit upset when he saw my sunburn, or the remains of it, but it was for a good cause, because I was at my oldest son's wedding. It was an outdoor wedding, I was in the sun for the ceremony and pics, the rest of the time I was inside or in the shade. I told my hubby that I was going to wear a turtleneck to the visit, just so the doctor couldn't see my burn, but it was about 106 on the day of my visit, so couldn't see going the turtleneck route. He, my rheumatologist, might have been suspicious. lol So, after that great visit, I just had to treat myself to something yummy, went to a lovely restaurant and had fresh greenbeans. They are to die for, very crunchy, cooked slightly in sesame seeds and some kind of sauce. And the waiter wasn't hard on the eyesight either. He was very flirty, cute, and nice, so I was generous withthe tip. What's a girl to do? Of course I was probably old enough to be his grandmother, but he was nice, very chatty. Here's to good check ups to everyone! ~whirlway
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