YFChoice

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Everything posted by YFChoice

  1. It's been awhile since I've been on so I thought I'd pop in and see what's going on. Some interesting topics. I can personally say I have no bra problems but then I am a guy, so that's a huge relief. Just a quick note....I've had systemic sd...is that what it's called now?...for 28 years and my wife has had it for about 16. We just celebrated 10 years of marriage. People think I'm strange when I say I'm glad I have scleroderma, but If it hadn't been for this roller coaster disease, I never would have met the love of my life. We're celebrating now by being grandpa and grandma to 3 and 5 year old grandsons. At age 54, that is a wonderful thing. For all of the newbies. This disease does sometimes suck. I've done the heart attack, rounds of chemo and done enough ER visits and testing and been on enough meds to start a new wing of our hospital (or so it seems that way). But, I still have found joy in this life. I still smile and laugh. I am happy. A positive attitude sure helps to offset the negatives of having this illness. My wife and I not only stop and smell the roses....we grow them too. Just my dime's worth. Glad to see this group is still active.
  2. This is one of those questions that I don't like to entertain. It is a very thought provoking one and sure makes you think. But in my 27 years with this illness (and lupus) I have never done the "what if" game. SD is such an unpredictable disease and there is no set pattern as to the way it progresses, or not. It has worked, for me, to have the attitude that I will be able to handle EVERYTHING scleroderma throws at me. It has worked. Of course I have done plenty to prepare myself for whatever happens -- eat right, take my meds, workout (body, mind and soul), laugh, enjoy life. And I know, no matter what hurdles I face, I will enjoy life to the fullest, as it presents itself that day. Not every day is the way I want, but I can deal with it. Short answer -- I'm with Penny on this one.
  3. Hey Razz........I'm sorry for your loss. Hang in there.
  4. Sarah.......I've had SD for 26 years and my wife has had it for 15 years. I still hike in the mountains and ski and snowshoe. Sometimes I'm a cyclist. My wife also plays golf. We still work and play. I am 52. I know more about SD than it knows about me. I refuse to give in, give up or give anything to this disease. So, learn all you can. Take what works for you. And, by all means, run that marathon in February.
  5. Amanda, you are so right. Having had SD for 26 years, I have learned so much about myself. I have learned that I am much stronger, mentally, physically, spiritually than I could ever have imagined. I have learned to live each day to the fullest, to not sweat the small stuff, and to embrace family and friends. My joy in life is to have Sunday dinners with my sons and wives/girlfriends. My "job" in life is to be "Papa" to my 2 and 4 yr old grandsons. But my love in life is my wife of 10 years, who also has had SD for 15 years. There is something special when you don't have to explain all of the comings and goings of SD to your spouse...........cause she also understands. Living with SD CAN be a positive experience..........but you have to choose to let it be one. "Can I be ill and happy?" Absolutely.
  6. Hi lotokids. I live just down the street from you in Sandy. My wife and I both have SD. She's had it for approx 15 years and I've had it for 26 years. The pft test is an absolute must. We both have lung issues and get tested every 6 months. I have been on celebrex and prednisone a long time. The 5 mg of prednisone I take is something I've done for years. The celebrex is a lifesafer for me. I've also added lyrica to my med cabinet. Also prilosec. To me, it's about quality of life. Yes, some meds can cause problems (ALL meds can cause problems) but SD can cause problems too. So if I can rein in some of the SD problems with drugs, I'm all about that. It's allowed me to continue to work as a massage therapist and it's continued to let me play at skiing, snowshoeing, hiking and cycling. It's allowed me to continue gardening. It's allowed me to keep up with (but barely) an almost 4yr old and almost 2yr old grandsons. I pm'd you with my rheumatologist and pulmonary doctors names and phone numbers.
  7. Razz, you must be lurking in my house and watching me. I have brain fog all of the time. But my wife doesn't. Must be payback for something I've done. I found that if I slow down a little and take a moment to think before I talk, I can sometimes come out of the fog. Now if we could only get our politicians to quit misthinking AND quit misspeaking!!!!!
  8. Hi Sweet.....I have SD (26 years) and lupus. My doctor put me on 225mgs of Lyrica for pain and I love it. I take it about 9:30pm (I don't go to sleep til midnight). I sleep much better now, and, even if I get up in the nite (to take the dog out) I'm able to drift back to sleep. Before, if I woke up, the odds were pretty good I wouldn't get back to sleep. Plus the pain has for the most part been kept at bay. I have had no side effects at all. When I was first put on it, I took it in the morn and was a zombie all day. So I switched to at nite where being a zombie is not such a bad thing.
  9. Razz......my exercise routine prob won't work for you, but I'll tell you anyway. By the way, you're right.....it is amazing the way you feel once you start a routine and stick to it. It becomes a part of your day and it's sorely missed when you have to pass on it once in awhile. Anyway, I do weight training. Even with my rebuilt arm, I find that weights make me feel good and make me look good (at least that's what my wife tells me, but she could be pulling my leg). I also like to hike in our Utah mountains. I can't wait for winter cause then I get to snowshoe and ski. I have given up cycling for this year....got tired of being hit by cars. Maybe I'll do more next summer. My schedule for the weights depends on how I feel. Sometimes early in the morn, sometimes late afternoon. I bought my wife (who also has SD) a set of 2lb and 3lb dumbells that are soft covered to protect her hands. We also have a weight machine system (from Sears) in our basement. It is safer to use than heavy free weights. Keep in shape so you can write that next book.
  10. Congrats Razz.........Now I have a big question. When I buy my copy (and I will) can I send it to you and have you autograph it so that, years later, when you become another James Patterson, I can say to my friends, "Ah, I knew her when she was just one of us."? Seriously, you deserve all of the platitudes for a job well done.
  11. Well, I went back to pulmonary doctor, got my prescription for the cyclophosphamide, prednisone and some antibiotic. They're sitting on my kitchen counter, staring at me. I'm getting over a chest cold (ignited by my bronchoscopy done 2 weeks ago) and so I'm supposed to call back on Monday. If I'm better, I will then start. Interesting. The last 3 times I did this, I had no reservations. But then I wasn't taking the drug combo I'm going to take this time. Honestly, I'm more bothered (not worried) about taking 60mg of pred every day for 3 weeks. I know what it's going to do. Not looking forward to it. My wife suggested getting another PFT done as a way to convince me that I should or should not do this. My lung function has changed....just having 2nd doubts on whether this (the cyclophosphamide-pred) is needed yet. Just thinking aloud.
  12. So I called my pulm.doc and left a message voicing my concerns. I've been on pred forever....usu. in the 5-10mg range....and I've been on 70 before for months. So I'm well versed in this good/bad drug. I've also done the cyclophosphamide thing, tho only in IV form and not pill. Anyway, he called me back and we talked for 10 minutes. He decided on no action now, we'll do the PFT test again at the end of the month. Then, we would look at the results and decide what action to take. He even suggested that if need be, we can do the cyclophosphamide without the pred or maybe a lower dose. He said he had been doing research ever since he heard my message. I might add that this doctor is awesome. He has to be as my wife will be seeing him shortly for her lung problems. So, for now.......it's back to the everyday life with scleroderma. Don't you just love it? Never a dull moment.
  13. Karen......I could make housecalls to Long Island, but since I live in Salt Lake City, I'd have to charge you a bunch for the outcall.
  14. First of all, Karen, think about changing your pillows. My wife (who also has scleroderma) and I went to a local bed and bath store and bought the Therapedic pillows. They're a bit pricey, around $100, but well worth it. They conform to you head and neck. We were able to get rid of all of the other pillows and use just the one. She got the small one and I got the large. Also, look for one of the many different herbal bags that you can find (like the rice bags).....probably also at this store. They come in different shapes so as to conform to your shoulders or neck or both. They can be microwaved for heat or put in the freezer for cold. If you use heat and cold alternately, do heat first for just a small amount of time followed by cold for a little longer time. I'm with Tru.....no pred. Try over the counter stuff. If you lived close by you could schedule a session with me. I'm a massage therapist and I deal with neck and shoulder issues every day. Good luck.......hope you feel better soon.
  15. After 26 years of having SD and lupus, I can now say that I am in a better place than ever before. Having a potentially debilitating and/or fatal disease forces you to change. It forces you to look inward and find out what kind of a person you are. That can be scary. Many people won't or can't do it. I think they change for the worse. They don't deal with the disease either well or at all. That decision decides how others look at and treat them. It's a decision only you can make. Only you can decide how you're going to live your life. And you do have to consider influences of daily life...family, friends and job. That can be frustrating and depressing. I first went thru the denials, anger, etc. that Razz described and I was not doing well. But I was also in a marriage that was best described as "waiting for me to die." And I had a job that did not allow me to take off when I needed to. About 11 years ago, I realized that I was not who I was supposed to or wanted to be. I had let too many influences bring me down like an anchor on a sinking ship. So, I did what I had to do to save me. I made changes. I married a new wife, moved to a new state and got a new job (retiring from my old one). Skip forward to today. I am 52. I am more laidback and patient. Small things simply do not bother me. I am more tolerant of people.....most of the time. I have found out how incredibly strong I am, physically, mentally, spiritually. In the last 10 years I have survived a heart attack and 2 car/bicycle accidents. I have endured 3 chemo treatments and am looking at another one soon. Today, in my garden, a bee stung me. And yet, this decade has been the best of my adult life. I have finally stopped to smell the flowers, hike the mountains, take a nap, play with my grandsons (ages 3 and almost 2) and kiss my wife. SD has changed me. Change can be good. For now it's all good. Life is what you make it. Do your life well. On Tuesday, my wife and soulmate (who also has SD - 15 years) will celebrate 10 years of marriage. For better or worse.......that I wouldn't change.
  16. I'm so happy. I just found out that my pulmonary doctor wants to once again start me on a regimen of cyclophosphamide and prednisone. I couldn't be more thrilled. It seems that my life for the past 7 years has been rolling merrily along with barely any bumps in the road. Well, there was the time the car pulled out in front of me while I was going downhill on my bicycle and I hit it at 40mph......that WAS a big bump. However, my lungs, having had so much fun snowshoeing, hiking and cycling, decided to shake things up. So they presented me with scarring in the lower lobes of both lungs (the ground glass) and intense current inflammation, making it V E R Y difficult to catch a breath and breathe. And, since I've gotten used to breathing, now I'm going to have go and do something about it. Because of some very selfish lungs (with a need for attention) who didn't know how good they had it and couldn't leave well enough alone, now the rest of the body is going to have to suffer....very soon. So thanks. Thanks a lot. In all or partial seriousness, this will be the 4th time I've gone thru this. At age 52, it is not something I look forward to....a little scarier, a little harder to physically get thru. But I will get thru it. With a little humor and my wife's most excellent chicken noodle soup, things will once again get right with the universe.
  17. Smurfette........I have to agree with your husband and friends. I've had SD for 26 years. My wife has had it for 15. WE met at a SD convention, got married and will celebrate 10 years next month. Between us, we have 5 boys, ages 17-26. For a long time, we did not let on to our kids when we were going thru the tough times. We didn't want to see them worry. The result was that they were not around when we could have really used their help......our own fault for appearing so strong on the outside. So, we finally sat them down and had a heart to heart talk with them. It was tough. But, each one of 'em now not only will help if we ask them to, they will actually ask us how are we doing and is there anything they can do for us. No pity party......just genuine caring. I work as a massage therapist. My wife is a scrapbook designer and teacher. We let our really good clients know what we have. The massage industry is a tough group and it is a challenge to keep clients. I treat my clients as royalty. They know my problems. If I have to cancel, they understand. They don't want to lose me and by keeping them close, I won't lose them. We don't tell everyone obviously, only those who we have a lot of contact and interaction with. It sounds to me like you've lost some humor in life. I realize that this is a tough disease. Nothing about it is funny. But life can be more fun, even with SD, if you can put a humorous spin on it....to lighten up a little. When I lost some of my hair during chemo, it grew back a frosted color. My hair stylist said I was really lucky and did I know how much some of her female clients paid to have that frosted look? She survived cancer so she was being funny. So, when someone would ask me how much it cost for me to have that look, I would tell them thousands of dollars and all of my meals for 3 days. I sat across from an 8 year old little girl once during one of my chemo treatments. She had me and the nurses just rolling cause she was cracking jokes and just making a dark process just a little lighter. I knew that if she could see her lot in life in a different vein, so could I. Give people a chance. You just might be surprised. IT'S A LOT EASIER TO NOT ASK FOR HELP IF YOU KNOW THAT HELP IS THERE IF YOU ASK. If some of them get too dark and morbid, just put 'em in their place. Tell 'em to save the eulogies for when you're gone and you don't have to listen to 'em. It does work. I did it.
  18. Hey Razz.......of course I'm Texan by heart. Having been born and raised there I am actually Texan by soul, Texan by spirit. It's hard to explain but I feel a strength from being Texan. Arrogant? Maybe. Hoaky? No way. I know you like to handle things with a little bit of humor. It works, doesn't it? Karenlee.....the other times it was by cyclophosphamide IV. I would do it on Friday morning and hopefully be able to somewhat function by Monday. When I took imuran by pill, I worked every day but it was tough. I guess I'll find out soon enough how it works this time. Peggy........I've had SD for 26 years. I've had more highs and lows than a weather map. Since I've always been an athlete, I knew pretty quick that something was going on. Snowbird........My wife is a great supporter. She's had SD for 15 years. We kinda know what's going on with each other when we feel terrible. It has made for a nice marriage...10 years next month. One of the reasons SD has been good to me is finding her. Barefut.....thanks for the kind words.
  19. Lis73........There's a few males on this forum that would like to be of help if we can too. I am 52 and have had SD for 26 years, this after being given less than a year to live. My wife has had SD for about 15 years. We met at a SD convention and will be married 10 years next month. It is not the end of your world........just a change in your world. Become very educated about this unique disease and don't be afraid to stand up and have a say in your treatments. They are, after all, about you. This forum is a very good place to come and share, vent, cry or whatever else you need.
  20. Tru.........They can never get my blood drawn or get an IV on the first stick. When I got hit by a car 3 years ago while cycling (bicycle), the nurse tried to give me an IV. It took 8 tries and a supervisor to finally get it. The nurse was so upset, thinking she was killing me. Me? I was trying to crack jokes so she would understand that that was the norm for me. RobinAustin, I am a Texan too. Houston-Galveston area. Been in Utah for 10 years, but once a Texan, always a Texan. I uses to be afraid of needles, before SD (26 years ago). But I've been stuck so many times I just got over it. Now, I like to watch and observe the techniques the med personnel use on me. I even give 'em advice sometimes. I'm sure they like that. Not. YFChoice
  21. Been on prednisone for over 10 years. Tried getting off of prednisone for over 10 years. Can't do it. I'm on 5mg now, which is as low as I can go and my rheumatologist says (and I agree) is acceptable. My understanding is, that after so many years, my body is incapable of resuming it's production of cortisol. So be it. It's all about quality of life. Hang in there Tru.
  22. Razz.......you made it. And here I thought you had been posting for a long time. This is a very cool place. Everyone here is respectful which is a nice change. Besides, you already have an old group of friends (well, I'm prob the only age old one) here. Now you'll just add some new ones. YFChoice
  23. Congrats Tru.......you definitely deserve it. Having worked for the postal service for 22 years, I remember what it was like to try to retire on a disability. It took my doctor a few days to fill out his share of the paperwork saying I needed to retire. It took the post office over 6 months to agree. Typical. Wonder how the bureacrats would feel if it was a member of their family or even them? Bet that process would speed up. Being a Texan, I make a monster salsa......any heat index you want. Just let me know when and where that party is. YFChoice
  24. Sadie.......it would be amazing if you could bottle up your strength and attitude and let everyone have a taste.......it'd make the world a better place. YFChoice
  25. Unfortunately, the bell curve, just like the treatments for SD, does not work for everyone. I have systemic (or whatever it's called....the kind affecting joints and internal organs). When I was first diagnosed, I was given less than a year to live. This was in 1983. The first 3-5 years were rough, being in and out of hospitals and going thru all of the "stuff." Then I had 2 years where everything got better.....skin softened and all of the other problems lessened. From 1990 - 1997, the SD took me on an easy roller coaster ride.....sometimes causing bad problems but most of the time nothing I couldn't handle. Then, SD took vengeance on me. In 1998, my lungs got worse and I went thru a round of chemo. In 2000, I had a heart attack (SD related). Then I had 2 more rounds of rough chemo due to lung problems. However, like a bad storm, it let up and I've been on the plateau again, enjoying an uneasy truce. Until, last week. My latest PFT test showed some dramatic changes which coincide with how I've been feeling lately. So we'll see what's coming up next. I do think my first 3-5 years weren't as bad as some of the others. Having said that, I am not one of those who pays much attention to test numbers, blood indicators or the like. If I feel bad, I take care of it. If I don't feel bad or if it's something I've done before, then I don't worry about it. My rheumatologist has commented before, that, according to my test results, I shouldn't be able to snowshoe or ski or hike. I've had SD for 26 years (I know I had it for a year before being "diagnosed"). My suggestion: Don't worry about how many years of living with SD are good ones or bad ones..........just make sure they're all worthwhile ones.