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About bawana

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  1. Hi Jackie So sorry to hear your news . Try to keep positve. My thoughts go out to you and your family. There is always new developments in this field. fingers crossed and tons of hope Take Care Bawana
  2. Hi sherrill good to hear the shots work good for you to. Maybe where you are the pneumonia shot is a bit different. Here in Canada, it's a one time shot. Once you get it , you never need another...........lol different juice I guess. Before they give it to you , they have to check your records to mske sure you've never had it because you can't have it twice. That's interesting.....lol...I would have thought they'd all be the same. Take Care Bawana
  3. Hi Helen I think it is got to be your choice, but some of the feedback that you'll get here should help you decide. For me... my doctor bugged me for years to get it, I always stayed away from it out of concern that it may make things worse. I decided to get it because I was getting more flu's plus they were staying longer and everytime, I would get a little worse with my heart and lungs. They never seemed to come fully back to the way they were before. The first year, I expected to feel quite bad because most people do and then the following year it's suppose to be fine. I was quite ok that first year and have been getting one ever since. If I do get the flu, it's very mild and short lived. so for me.... I say yes get it. LOL my scleroderma areas are....muscle, bone, joints, skin, GI, heart lungs kidneys and liver...lol in others words tip to toe. it was a good choice for me. The pneumonia shot I had 2 years ago, figured the flu shot was alright ,so I did the pneumonia one. all is good there to. Unlike the flu shot...having to be done every year. This one is a one time only. Plus it protects you against 24 or 27 different types of pneumonia. With the lungs the way they are ...pneumonia is the last thing we need. so for me...it's a yes for both shots Take Care Bawana
  4. Hi Rachelle Sorry you had such a rough time today. Maybe the nurse was having a bad day, who knows.... she could have been a bit gentler to start with. For the biopsy, they freeze the area first, so it will be better and with today, if they were going to dig like that ...you'd have thought they would've frozen that as well. Take Care Bawana
  5. Hi Dana Jefa and Janey have your concerns covered pretty good. I just want to help you understand that YOU are just as important as any other patient that the doctor's may have. And your scleroderma is just as concerning as the rest of us, it's just a different form of it. With the many years that I've had to deal with this, I've learned that you have to stand up and demand as well as being choosey about who you're seeing. There are allot of doctor's out there that know nothing much beyond the text book when dealing with scleroderma. You need a good doctor that knows the disease. LOL...I am at the point , that in alot of cases....I interview them (so to speak). If I don't like them .....they don't get my business...lol If you were here in Alberta , I could tell exactly WHO to see, but I'm not sure anymore on the Ontario doctor's So, check around, ask questions and make sure you get your anwsers. This is happening to you , not them and the more you know and learn, the better off you'll be in handling the disease. Take Care and good luck Bawana
  6. Kiwi....lol yes it is a wolf, and no I don't have lupus lol at least not today. For years, off and on, lupus will be positive, lol then it'll go and be gone again for a while. I love wolves and eagles and have a large collection of both. The wolf also happens to be the test research animal for lupus....lol scleroderma's is a chicken, because of the skin. Last I heard they were also talking about a pig as well, again because of the skin........interesting. Take Care Bawana
  7. Hi Kamlesh Sorry to hear your having such a battle with this. As Sweet says it can be a challenge. I have found you have to find peace and acceptance with this foe. It has to become your friend. I know it sounds strange, but it ususally works because we always accept our friends for what they are and work with them. This is much the same. Pain and discomfort is a big part of that. lol If I got up in the morning, with no pain.....lol... It would be "Wow...no pain there must be a problem some where" You take one day at a time, plan for the future and find something good and beautiful to smile at everyday. It can be anything from a child's laughter to a butterfly sitting on a flower. Find something good in everything that's negative and surround yourself with good and positive people. We have our ups and downs, but this is now our life, for better or worse. When you are having a bad moment go to or have someone come to you that you know will make you smile and put you at peace and ease. Even put on some music, I have certain songs that I relate to people or events that have happened in my life. lol They all make me smile or chuckle. I put them all on a disc and I'll play them when no one is around to help me crawl out of this seemingly dark hole that I want so bad to crawl into. It's different for everyone. You have to find what is the "light" for you, whether it be people , music, nature etc. It is so important for us to stay postitve and upbeat if we are going to live with this and beat it. Take Care, Hugs and many postive thoughts for you. Bawana
  8. Thanks Sweet, yes he is a gem and keeps telling me he's not going anywhere. He's gone through , (I think) sometimes more than I because he has to sit and watch alot of things he can do nothing about and feel totally helpless. That is a very tough thing to do. There is only so much our spouses and families can do and it's so hard on them to watch the pain and suffering that we go through. My hat goes off to to all of you out there that are on the other side of this. You're a great lot and we love you for it. We'd most likely be lost without you. Take Care All Bawana
  9. Hi Donna Sorry to hear your having such a time with with your feet. Our feet are very important and a must to take care of. If it was me ...lol I wouldn't wear them. But, for you I would recommend maybe getting the one's that just go to the ankle or heal. They may work alot better for you. The ankle one's you may have to be more careful with if you swell alot because it could be easier to cut the circulation off. Take Care Bawana
  10. Hi Donna I've had feet problems from almost day one, Yes they can get very painful as well as alot of swelling. For a number of years I had to wear special insoles that you just slip into your shoes. The insoles are made for your feet, They do them up in physio mostly. Now I can get away without them as long as I wear certain shoes. With the toes curling.....if you can get a nice foot rub, It not only feels good and soothing, but it'll help the toes because they are rubbed and stretched out. Take Care Bawana
  11. Hi Elehos Thanks for the welcome. I agree laughter is the best medicine. lol I quite often get from my family "thats not funny!!!!" then I just laugh some more and say "oops" I came to terms with this a very long time ago, and passing on from this disease is just a part of what my life is...lol we just never know when. When my family and friends get upset at my joking I ask if it's better that I sit and worry about when I'm going to die or where I hurt etc. That doesn't do us any good and only causes more harm because of the stress, so I chuckle and and say "next" When my kids were small, I just kept telling myself, " I have to stick around long enough so they can look after them selves" Now it's the next thing in line lol like , getting back to the coast and walking the beach while I can still walk on my own, etc. Many doctor's have told me " you're not normal" My husband just laughs and say "tell me about it " I have to be strong for myself and everyone else, but I sometimes get to the point where I've had enough and am tired of fighting and being strong and I want someone else to take care of it for a change. Not to much about me is normal or usual. My SD started on my leg, rather than my hands or face, I was localized and am in the 5% that go systemic, I don't have the classic SD face or hands etc. Told my doctor , if I came into see him like normal people do....I might as well just set up a cot in his office. lol I stay away from doctor's unless there is something I can't handle myself. For the most part, all they can do is treat the symtoms and see where its gone. My physio guy tells me I'm funny because I always have a smile and a chuckle no matter what. This is a tip for any of you that don't already know. In physio they have a cold lazer. They can use it in pen form or what they call a bomb. When the joints get real sore and the mobility lessens, you can get this done and it's great. I get my shoulders and knees done. Its wonderful. What you get from it is, No side effects(like we get from meds) way less pain and more mobility. Now the herbal end of things....sure I'll send you a PM on some things if you like just let me know what you need info on. I still help others just not so may SD patients any more. Only because I think I'm the only one in town that has it. There was one other but have since gone. There are many things that we can take and do to help us but we have to be careful because some herbs and suppliments can't be take with certain conditions or doctor meds you may be on. Yes , I am papered lol but I have never set up shop. Mainly because I never no what I'm going to be like from one day to the next. So people come to me.... lol... when they can find me. Take Care......ttfn Bawana
  12. Hi Rachelle I've had it for 25 plus years, I started out with morphea on my leg and it's now head to toe. I've been systemic for 24 years with heart, lungs,kidneys, GI, hiatal hernia and more. Just goes to show you that there is always hope. I use to tell patients that came to me, that you have to make friends with the disease and learn to accept and live with each other. I know....it sounds weird, but it seems to work. And it's better than what allot of the doctor's tell patients " go home and wait to die, there's nothing we can do for you " lol not me.
  13. (Note: Moved from Getting to Know You Thread) Hi Sweet, Thank you for the warm welcome. No need to be sorry, it's been a very interesting "ride" to say the least. I already outlived the date that the doctor's gave me by at least 15 years and I helped a lot of people along the way, so it's all good. I don't help as many now because I live in a small town and my body is telling me to chill out , lol This Friday I get to find out how bad the kidneys are. Kidneys, Heart and lungs are whats slowing me down at the momentand it can be very frusterating, but I keep up the fight. I will be 46 next month, have 3 kids and a wonderful husband that is there for me through it all. I think I'm very lucky. I know it can be very hard for a spouse to understand but he's always there, good and bad. In most cases he has to pin me down, for my own good because I don't know how to say die or give and can be my own worst enemy. I spent so many years fighting and hiding the scleroderma from my kid's, that I am know no longer able to show my illness or pain. I can be at a level 10 pain and still smile and joke. In the begining I had my doctor take me off all my med's and I went it on my own. I was turning into a zombie and trying to run around after 3 kid's . Plus, I didn't want them to grow up with the burden of seeing their mom always sick and in pain and that's why I learned how to fight and hide it as much as I do. Now I don't know any other way. A friend asked me once if I'd ever tried herbal treaments. I ended up taking my course and have been a herbalist for about 19 years. I treat myself when I felt I needed to. I am on some med's now because I don't have a choice, mainly for heart, BP and water. My BP won't come down and stay down, if I get a reading of 197/99 , we are happy because most of the time it's around 220/114. lol And that is with med's. We try to get out to the mountains as much as we can. I love it and it seems to bring the rates down a bit when I can play in the rivers etc. It's only about an hour away, so we go quite allot. I can't do things and keep up like I use to, but it doesn't stop me from trying. Thanks again for the welcome lol now I'll give you your ear back ttfn
  14. Hi Everyone Not to sure what to write. This is my first night and I'm totally new to forum. So I guess the best place to start is who I am. My name is Deb and I'm in Alberta,Canada. I have Generalized/Diffussed Scleroderma. I was verbally diagnosis in 82 and went through my testing in 83/84 after my 3rd child was born. I went systemic while I carried him. Never been lucky enough to have a remission yet, but I fight and don't know the meaning of the words "give up" I started a Canadian patient organization in 84 because I knew there had to be others like me out there needing help and info. I am a fighter in the worst way and try to always have a smile. lol like most of us out there ....there are tons more to write about, but I won't bore you with that at this point. Take Care All hope to chat more in the future. It's nice to see something like this out there, where people can reach out.
  15. Hi Kiwi I also get them, mostly on my torso but they can pop up any where. What we discovered in getting together with others, was that a new patch or thickening would show up shortly after they went away. Not sure if this helps you any , but it might be something to watch for. They can range from one to a cluster and usually seem to be filled with fluid. Also very itchy. Yes I agree the disease is very weird lol but I also find it very interesting and confusing at the same time.
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