Amanda Thorpe

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Posts posted by Amanda Thorpe


  1. Good point Pilgrim! We're all different having our own tailor made disease even though there are some guidelines about what scleroderma might do and when. I do wonder how old this 3-5 year stuff is just because I don't know of anyone who has actually experienced it. If you do experience it I must be told so I can refer to you as an example of someone with scleroderma that played by the rules!

     

    I guess these guidelines could help give a newbie an idea of what to expect but for me it gave me unrealistic expectations. When I bought my first wheelchair in year 1 it was an assisted one because I expected to be out of it within 2 years, I moved into a powered one last year and now in year 7 I still have some hard, tight skin.

     

    Now I just want to say that I am by no means jealous of anyone who has enjoyed the 3-5 years experience you understand. Not at all. :emoticon-crying-kleenex:

     

    Take care.


  2. Hello Jerrig

     

    Dermatologists can treat simple morphea and if you're happy with how things are going then there's no reason to go elsewhere.

     

    Systemic scleroderma is always treated by a rheumatologist, you haven't said which type you have, I am guessing limited? Many people get on well with mycophenolate and provided you have regular blood tests you could easily be one of these.

     

    Let us know how things go.

     

    Take care.


  3. Hello Miocean

     

    I had started a reply to you but lost it when I fell asleep! Sorry! Don't be surprised that pain has such a grip on you, kidney failure might have killed you but pain kills your quality of life. 

     

    Ask anyone and they want a quality life rather than a long one and especially if there is no quality at all! No one wants to live with pain but it is typically under recognised by the medical profession because it won't kill us and they focus on the stuff that will. If you have say lung problems and a digital ulcer that's infected and won't heal causing you great pain, what do you think they will focus in on during a 10 minute consultation?

     

    Although we might have to learn to live with pain there are things that can be done to help and I suggest you get referred to pain management. There is no failure in taking pain medication especially if it improves your quality of life but they have other tricks up their sleeve. In the new year I am going to have a lumbar sympathetic block and expect good things from it. Basically they will inject stuff into nerves in the back and once proven successful for me, will repeat the process by burning the nerves and repeating as the nerves grow back. Clever eh? And yes I will be out like a light when they do it!

     

    Please consider seeing a pain specialist and take care.


  4. Hello Greypilgrim

     

    Just a quick reply to say that my understanding is that unless you are terminal/nearly terminal it's not a consideration because of the huge risks. There have been posts over the years about this, type it into the forums search bar, and of the 3 I can remember, 2 died. One guy who used to be a volunteer with the ISN (gocartmozart) made a remarkable recovery and moved on. I am afraid one young woman (Peanut aka Lisa Volz) another volunteer had strokes afterwards, toes amputated and eventually died. Another man died during the process, Roger "Birdman", it was his wife who posted.

     

    Ultimately you won't know until you speak to a doctor but I don't think it's the answer to stopping your face being involved and I say that as a woman who was initially obsessed with that possibility. For the first year that was my fear, not dying, losing my face, and I am sure I would have had a transplant then if it had been predicted. Ironic really, I look at myself now and  wonder who is staring back!

     

    Let us know what you find out and take care.


  5. Hello Chip

     

    Welcome to the forums, now I know what's worse than scleroderma, scleroderma as a result of cancer! I mean are you kidding me! I am so sorry that you and your husband have to contend with this wretched disease now as well. NSH (northstarhope) is quite right in that you will get first rate support here as we all know scleroderma up close and personal, whether as the person with it or loved one of.

     

    I guess that you already have your coping strategy in place, having made it through cancer, but I hope that being here helps.

     

    Take care.


  6. Hello Greypilgrim

     

    Has your rheumatologist suggested IVig? I know some people with scleroderma have it but it's not a mainstream scleroderma treatment, I wonder if the cost and potentially short term benefits have anything to do with this? Just speculation of course because, apart from the information on the ISN, I know little about it.

     

    Take care.


  7. Quiltfairy, the best thing about sharing how you feel is that it will resonate with someone, letting  them know that they're not alone. There's no guide to how our emotions will react to a life changing diagnosis and its continuing effects on us. When we end up riding the "emotional rollercoaster" we have no idea what's going on so what a relief to find out we're not the only one!

     

    Take care.


  8. Dear Shelley

     

    Thank you for your donation, even at this difficult time, you think of all of us here at the ISN. I am so sorry that you have had even more grief to cope with now because of the loss of your son. As much of an anathema as it might be, you need to try and think about yourself, you are so precious to all of us, please take care of yourself.

     

    Take care.


  9. Hello Robida

     

    Welcome and it's so unhelpful when doctors just give the diagnosis of scleroderma! I was given this diagnosis and a leaflet which after reading realised that I in fact had scleroderma systemic sclerosis and once I saw an expert this became diffuse systemic scleroderma. The thing is, most doctors have no real understanding of scleroderma let alone that it has so many different types but what a difference there is between morphea scleroderma (localised, never life threatening, never affects internal organs) and systemic scleroderma (can affect internal organs and life expectancy). See?

     

    The best thing you can do is make sure the doctor your mother is seeing is a scleroderma expert at best and a rheumatologist who is at least familiar with scleroderma. It is too complex a disease to leave to chance so it may be worthwhile doing some research about the doctor your mother is going to see. 

     

    You might find it helpful to look at our video selection which includes diagnosis of scleroderma, symptoms of scleroderma, types of scleroderma to name but a few. They're bite size so easy to take in when you're head is all over the place.

     

    Interstitial cystitis (IC) is an inflammation of the bladder and is also an autoimmune disease, I was diagnosed with it in 2004, scleroderma came in 2007. It's common to have more than one autoimmune disease for sure! IC is no walk in the park, the pain can be severe and the frequency (peeing every 15 minutes) unbearable. With IC just a teaspoon of urine can irritate the bladder, the good news is that it can be treated.

     

    The best thing you can do is prepare for the upcoming appointment, have your mother write her questions down, have someone go in with her not just to remember her questions but all of the answers. For your mother, think about how YOU want the consultation to go before it happens so you're not caught off guard.

     

    Post questions as they come and I suggest you stay here, people on the scleroderma "surf" board end up fish food! Here you can be sure of accurate up to date information.

     

    Take care.


  10. Hello Anastasha2

     

    Welcome to the forums and thank you for your post.

     

    Unfortunately I have not found a solution to this problem other than a rather impractical one. Last time I travelled to my specialist in London I had my husband undo my bra once in the car to try and give the "girls" as much chance as possible to stay in the bra. I also wear a cami type top to aid this and just sit still. When we arrive at the rest stop my husband has to re-hook me so we can get out of the car, the only problem is that I have to surreptitiously scoop the "girls" back into the bra! When we visit the rest stop on the return journey the bra comes off and all I can say it thank goodness for the cami top! 

     

    I have thought about a longline bra and if I can find one in my size may well do. At the moment I have been going up a band size but this creates another problem, the impact of which I underestimated, the "girls" trying to escaping from the bottom of the bra! Not cool!

     

    One day I will remember to actually ask my specialist about this.

     

    Take care.


  11. Hello Quiltfairy

     

    I have started to have dental problems because of scleroderma, dry mouth. An incompetent dentist didn't help! It's very frustrating because it's another thing we have to take on the chin, or jaw, from scleroderma. Having always had perfect teeth it's somewhat galling.

     

    I am glad you are pleased with your dentures and still able to eat. My husband has them and complains about not being able to taste food? Do you find this?

     

    Take care.


  12. Jeannie, it's even more wonderful when our taking in of said pet also betters their life. Dolly moved in, not because her previous home was deficient in anyway but because she could control this one and everyone in it! Beware the little, cute ones, they got wills of iron! Dolly is affectionate, wonderful and she can also be crotchety which we find hilarious, she knows how to throw her weight about for sure!

     

    Take care.


  13. Don't forget to take videos with your phone! We had our grandchildren and their parents this week and took videos, in one Dad takes both children up the stairs on my stairlift. Ok so maybe just take ones in which the child is being cute and adorable! The videos are a real laugh to enjoy once everyone has long since gone home and you'r lying, exhausted in bed!

     

    Take care.


  14. Apologies Steve, I missed your pictures in the gallery, thinking you were yet to have it done! The difference is amazing, that's what you call before and after. How long did the procedure take and were you in pain/discomfort afterwards?

     

    En coup de sabre can be really disfiguring and it is great to have you share your experience of almost completely reversing the damage caused by it. 

     

    Take care.


  15. Hello Quiltfairy

     

    It's a guess but maybe the interest in the hair loss on the arms related to tight skin? I lost all the hair on hands, feet, arms and legs when they were covered with tight skin. It just all fell out and I never noticed at the time and get this, when the skin softened it grew back...long and black...because that is just what a woman wants on her limbs isn't it?!

     

    Go with the earplugs or earphones and speak up and say "I am devastated and wish to process this in peace so please stop talking. I just know you'll understand what I am saying as you do this job regularly and so well." You're going to have enough on your plate managing your own feelings without worrying about those of a total stranger who is getting PAID to drive you!

     

    The phase you are in, the fear phase, will eventually move into another and where you are will soon be a memory you share with others on the forums, who will then find themselves, where you are now. 

     

    Take care and keep posting.


  16. Hello Ranchosteve

     

    I am in the UK but I understand that you guys can rate your doctors? That being the case, what sort of reviews does this doctor have, how many times have they done this procedure on people with scleroderma and how successful was it? Infection rates?

     

    The Royal Free London, a scleroderma centre of excellence, does a similar procedure for people with microstomia to give them back a mouth. They take the tissue/fat or whatever it is from a scleroderma free part of the body, check that the fat/tissue really is scleroderma free, then inject it or however they transfer it to the affected body part. The reason they check the tissue/fat to make sure it's free of scleroderma first is to make sure they don't inadvertently inject/transfer scleroderma back into the face.

     

    I hope your procedure is successful and remember to have those before and after photos ready for our gallery. If you want to, no pressure, of course!

     

    Take care.


  17. Hello Rudigee

     

    Welcome to the forums!

     

    It's seems a small matter, dry mouth but what a palaver it causes! I hate waking up with my tongue stuck to the roof of my mouth and my eyes stuck to my eyelids. Upon waking it takes me awhile to be able to swallow, speak and see properly and there is of course the long term damage.

     

    I hope you have your operation soon and that it's a success for you.

     

    Take care.