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Amanda Thorpe

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Everything posted by Amanda Thorpe

  1. New to this disease..

    Hello Quiltfairy Your doctor obviously wants to cure not prevent, okay, except scleroderma has no cure! That's why treatment is usually focused on suppressing the immune system to PREVENT damage and treat symptoms as they arise. Once the damage is done... Apart from their apparent lack of knowledge when it comes to handling a scleroderma patient, if they don't answer questions or discuss anything with you, as it's YOUR body I think you should have a say in what happens with it and, personally, I would ditch any doctor who thought otherwise. But that's just me. Take care.
  2. New to this disease..

    Hello Quiltfairy I gave the scleroderma expert link in my earlier post. There may not be one on your doorstep but there are some round about you...ish. It is another difficulty we don't need, having to travel miles to see an expert but it is worthwhile, in my opinion anyway. Here at ISN we recommend people see a scleroderma expert because of the intricacies of this disease and how important it to receive the right treatment at the right time. Having heard many horror stories from people treated by rheumatologists who thought they were experts, it's my recommendation too. It is of course personal choice though. Take care.
  3. Travelling with Scleroderma?

    Thanks Kathy, I will, along with write another! Can't imagine why he's so busy?!
  4. Newly diagnosed - what to say to Employer?

    Hello Steve The answer is they may in time. I am in the process of searching for a stair lift as I currently go up on my hands and knees and down on my butt, good thing it's well padded! I even struggle with the porch step getting into the house! I am in year 7 and my mobility has deteriorated year on year, I use a powered wheelchair downstairs and a self propelled one upstairs. I also have a commode next to my bed and one downstairs. I can walk a few paces but that's it. My dear friend with scleroderma has a stair lift already, she has been diagnosed 3 or 4 years? She does not use a wheelchair and is able to walk. What's the difference between us, the cause of our inability to use stairs. Mine is directly scleroderma, my dear friends is scleroderma and myositis. We both have fixed ankle joints and tight calves but this makes stairs difficult not impossible. Scleroderma has many associated diseases which can bring their own challenges and even affect mobility, it's common to have more than one autoimmune disease but it's not a given. Ten years ago we moved from a small bungalow (one storey) to a 2 story house with converted loft, I have difficulty with the stairs and can no longer access the converted loft. However, the house is big enough to accommodate the powered chair whereas the bungalow was not and although I can use a self propelled chair, I can only use it briefly in small spaces so it's swings and round abouts. If we were to move again and consider it our final move we would avoid stairs if possible and even if I could walk again we would still avoid stairs. Scleroderma can wax and wane so even if one day I could walk no one can say I'd stay that way. Of course I know nothing of your wife's mobility and only you two can decide, I just hope this information helps. Take care.
  5. Morphea past Lap Band Surgery

    Hello LagreAngel I have morphea, as well as systemic scleroderma, and apart from speculations on why I have it I have nothing! I think that once we have scleroderma, for us, the cause is almost irrelevant. It makes no difference to treatment or severity so makes no difference! Well that's what I think now anyway! Having said all that I know that trauma can precede scleroderma and I think that's what brought mine on. I think I was born with scleroderma but that it stayed dormant until something brought it out. Take care.
  6. Daughter just diagnosed

    Hello Jena Welcome and I am sorry about your daughter. I take it you mean Parry-Romberg's rather than Raynaud's in the last question? Here's the problem, there is no clear answer to many of your questions, in particular the efficacy of methotrexate. The only way to decide whether a treatment works is to try it, the only way to decide which is worse, the symptom or the side effect, is to try it. Bearing in mind en coupe de sabre can disfigure I would have thought some serious side effects would have to beat this. A lot of scleroderma is a gray area, what works for one doesn't for another, what happens to one doesn't happen to another and perhaps most frustrating of all is that what one doctor thinks another most certainly does not. We call the systemic form a tailor made disease, those with it snowflakes as everyone is so very different. . I appreciate you are looking for something concrete to go on but there's precious little of it when it comes to scleroderma. At some point you have to make a decision based on the information you have rather than searching for more of it. If the doctor is a good one then they will be able to help guide you and advise you. I have had diffuse systemic scleroderma for 7 years now and I understand wanting things cut and dried. Taking things one day at a time is a very good idea, scleroderma will make sure it gives each day plenty worry of its own for sure! We don't need to borrow any from tomorrow! Take care.
  7. New to this disease..

    Hello Quiltfairy It's not an thing easy deciding what we want when we die so most people don't go there. Being as you have please see our Cadaver Research for Scleroderma resources because there is no longer any need for cadaver donations for scleroderma as the disease process is already known. If you go ahead, before making arrangements to donate, check out what research is being done because 90% of cadavers are used for product testing. However, tissue is still needed in very early stages of disease, and autopsy studies may be done in some cases, especially if the diagnosis was unclear or if an experimental therapy had been used. Sorry to be the bearer of bad news. I lay money on scleroderma being the cause of your swallowing issues, GERD (gastro esophageal disease) is so common in scleroderma. I don't know if you're seeing a scleroderma expert or not, as scleroderma is so complex causing problems ranging from swallowing to joint pain it's a good ides to be under the care of one. You mentioned that you didn't know whether your swallowing problems were from the scleroderma or not, something a scleroderma expert would know for sure. When I say expert I mean someone on the list not a rheumatologist who thinks they are. Take care and keep posting.
  8. Travelling with Scleroderma?

    Hello Steve Apart from what Jo has mentioned I'd include what's probably the biggest consideration...how your wife feels on any given day! This will vary wildly with scleroderma, the only thing you can say for sure is the more you do one day the tireder you'll be the next. Our bodies demand an account from us when we exert them and the only currency accepted is tomorrow. I don't know your wife's level of fatigue only that if she has scleroderma she has it. Fatigue cannot be ignored or "pushed through" and trying either is guaranteed to land you flat on your back for weeks. Scleroderma fatigue is like the bride's big, loud, uninvited, drunken uncle, who gatecrashes the wedding then demands to be accommodated...in the house. Have a look at our fatigue video for a better understanding of it. If your wife feels relatively well now then this may be your opportunity and as Miocean suggests, make the most of it. I meant to say to you that we have a caregiver blog, written by my husband. I know the last blog was written a crazy long time ago but I am assured one is on its way any day now... Take care.
  9. Newly diagnosed - what to say to Employer?

    Hello Steve Having worsened over 6 months, I ended up off work for about 3 weeks prior to diagnosis. At that point I could hardly walk, was in a lot of pain, exhausted and yet in the face of the diagnosis I still asked when I could go back to work. Now must people when diagnosed with scleroderma don't know what it is, I did and yet I still asked when I could go back to work. The answer in a nutshell was that I never would, I was looking at ill health retirement. Afterwards my husband and I scoffed at this, went back to the hotel we were staying in (next to hospital) and after I explained to my husband what scleroderma really meant, we cried. That was 7 years ago today (August 23rd) and also happened to be our 10th wedding anniversary! The bottles of champagne and Australian, oaked chardonnay we'd smuggled in with us were use to commiserate rather than celebrate. October 2008 I was officially retired on ill health grounds, never having returned to work. Although an industrial tribunal had to say for sure, my employer considered me disabled in line with the then Disability Discrimination Act meaning they were obligated to do everything possible to enable me to be able to work. As it was a desk job and I couldn't even sit in a chair anymore for longer than 5 minutes because of pain, there was nothing they could do so I had no option. I remember that had part time working been an option it would have affected my pension and as retirement would still have been looming on the horizon it would have been a false economy. It was something to do with how they calculated your pension...based on last years earnings or something...so if my last salary was low... It is very possible your wife will end up retiring on ill health grounds, it is also very possible she won't, some people never work again, some manage part time and some stay as they are. My dear friend who was expected to be long gone (as in dead) by now still works full time. She does work from home the majority of the time and but for that wouldn't have been able to keep going. She delayed telling her employer for a very long time. I do not recommend this approach. Your wife is going to need all the help she can get including any offered by your disability legislation. Systemic scleroderma is considered a disabling illness in most countries so her employer might have to help her out. Of course if they can't you might want to get a pension forecast so you know what's what. As I said earlier this all depends on how ill your wife is, she might be able to work for a few more months, years or only days so get as much information as you can now to help you make the best decision you can. Finally, I spent years at the gym, then jogging as I was determined NOT to end up like Ma, first heart attack before 50 and debilitated by heart disease. Have a read of my blog "How could you possibly fail me?" Take care and keep posting.
  10. Scleroderma symptoms

    Hello Obxbound Welcome and I am also ANA & SCL-70 negative and always have been. Please see our videos about diagnosis of and difficult diagnosis of scleroderma. The point is made that blood tests should be used to support diagnosis or help dismiss a diagnosis, they should not be used in isolation to do either. In addition it is possible to have positive blood work but never develop any symptoms of scleroderma and we regularly have enquires from people put in this predicament by doctors requesting the test in the absence of any symptoms. Diagnosis should be made using clinical symptoms and medical history. Take care.
  11. Hello Georgia Welcome and my first suggestion would be to start getting back as much control as you can and you actually can. Although you can't do much about being ill you can become an active participant in your disease and treatment of it. In order to do this you need to know your disease and you need to know what your doctors are doing, It's hard work and feels overwhelming but it actually gives you back a sense of control. Instead of just receiving what doctors say/do, you can enter into talks with them so that YOU can make decisions and partner in decisions being made about YOU. Scleroderma can wax and wane and it seems its waxing away in you at the moment. It's not uncommon for it all to come at once. Are you moving the goal posts? My dear friend talk about this a lot. What I mean is that having heard about most scleroderma symptoms we both names the one symptom we just could not cope with, life would just be unbearable with...we then get that symptom...find we can and are in fact living with it so focus on another symptom that we just couldn't go on with... Have a read of my blog Adjusting Horizons, it was inspired by things said on the forums and deals with some changes you need to make to accommodate living with scleroderma. We don't want to have scleroderma nor do we want to make changes in order to live with it but we can't live successfully with it otherwise. We can still have a good life with scleroderma even though it's a life we didn't choose and don't actually want but we have to make a choice to life a good life with it. In order to live a good life we have to adjust the horizons within which this life will now be lived. I strongly recommend counselling, both for you and your husband. Scleroderma affects our families as much as us albeit differently. I had grief counselling to put to rest my former life because I am determined to have a good life, a life of quality. Have a look at our emotional adjustment page. I hope this helps and keep posting. Take care. Take care and keep posting.
  12. New Lesion

    Hello Louxx Well we have loads of information about linear scleroderma, including a video if you want to have a look. There are specialists in the UK but only one in Scotland. I hope your appointment goes well and keep us informed. Take care.
  13. New Lesion

    Hello Lou Nice to hear from you. what type of scleroderma do you have, localised or systemic? I have had diffuse systemic scleroderma, morphea and bullous morphea for 7 years now and I conclude that there's nothing set in stone about this disease...apart from us! When first diagnosed I used to hear that scleroderma would become inactive after 3-5 years, well not only is this not my experience but I don't know of anyone who has experienced this. Scleroderma can wax and wane for sure but other than that it's anyone's guess! Everyone is so different! I have had areas of skin softening and I have also had areas of skin tightening and hardening. For example, the skin on my feet has been tight and hard for 7 years but the skin over the tops of my big toes softened somewhat, so much so that I could point them upwards, then suddenly they got real tight again, then they softened, then they tightened up again and now move very, very little. Does sometime make me wonder what's going on inside... I remember reading here about a lady who had been on mycophenolate 10 years as every time she tried to quit it her skin would tighten and harden. In conclusion I think anything is possible with scleroderma. Take care.
  14. Heart Echo Test Worries

    Hello KathyD My husband used to have a saying "better out than in" so I totally agree. Remember that sharing helps others as well as you. We get to read a real post by a real person living a real life! Take care.
  15. Have a read of my new post on the UK Scleroderma forum and tell me what's your gain, your better by far? Take care.
  16. What's your gain, better by far, since scleroderma?

    "Kindness to myself...Usually I would be much kinder to another person...Forgive yourself and others..." Miocean, I have taken the above from your post, they struck me the most. Why, oh why, are we the person we are the most severe with? It's ridiculous for sure but sadly true, many things we would let slide in other we hammer ourselves for. Forgive? You bet! Our unforgiveness has no effect on the unforgiven, they go about their business oblivious to our feelings but we burden and scar ourselves and only ourselves. We refuse to forgive, endlessly recalling the severity of the offence, soon we have translated our unforgiveness into bitterness and resentment. We might as well blindfold ourselves and go play in traffic, real physical and psychological damage is inflicted by unforgiveness, bitterness, resentment and it's inflicted on US by US. I suspect that your attitude to your illness has a lot to do with your survival, how long and how well you have continued to live is no accident but the result of your determination to live a life of quality. Take care.
  17. Heart Echo Test Worries

    Wow, Kathy! That's a long, long time to be quiet and I hope you soon have your total voice back. Take care.
  18. Needing help.

    Hello Bharathi Welcome to the forums, I hope you find all the help and support you and your mother need. The Cleveland Clinic, My Consult, is a relatively new option and it's good to hear positive feedback. Many people live nowhere near a scleroderma expert so this option could be such a helpful resource for them. Amazing how technology and medicine move on, I mean could you imagine such a consult just 20-30 years ago? Take care and keep us posted.
  19. Hello Cemebe I have been on gabapentine then pregabalin, a more effective (and expensive) form of the drug, for about 3 years now. It's one of those medications that takes awhile to start to work but once it does can be very effective. If the gabapentin does not help try the pregabalin instead. Enrolling yourself in a talking treatment is such a good idea, why wait until it gets worse! I really hopes it helps you, living with a chronic illness is hard enough but living with one that can cause/causes a great deal of pain requires even more determination, discipline and coping strategies. Now that you've found us please keep in touch. Take care.
  20. Hello Helene Welcome to the forums! Many people have visited this forum asking the same questions you are now so you're not the only one. The answer is the same, it is possible to have positive antibodies and never develop and symptoms of scleroderma. Equally some people, of which I am one, have scleroderma but negative blood work and it's never been positive. You see, scleroderma should be diagnosed using a combination of clinical symptoms and medical history, using blood work and perhaps biopsy, only to confirm diagnosis and further categorise the type of scleroderma. Have a look at our videos diagnosis of scleroderma, difficult diagnosis and symptoms of scleroderma. If you have no symptoms of scleroderma then I suggest you just see it as an anomaly and carry on regardless. As it is entirely possible you will never have scleroderma you don't want to look back and realise you've spent any time worrying about something that never happened! Take care and if you have anymore questions please post them.
  21. "...when I was first diagnosed I did wonder if the quality of my life would ever be the same again. It's not the same, but different and improved in many ways." The above has been lifted from one of Jo Frowde's posts as she describes life after scleroderma and it made me think, improved how? For me the biggest improvement is the time spent with my husband, there's so much more of it! Although he works, part time at present, we are together more, we even think of hospital trips as days out! You can tell that pre scleroderma we really lived the high life...not! So, what's your improvement, gain, preference, better by far since scleroderma? Take care.
  22. Nasty Cold Virus

    Hello KathyD I am sorry it's so difficult for you all right now, the good news is that this will end, the not so good news, that something else will take its place but you will be better prepared, better able to withstand whatever that may be, having succeeded through your current difficulty.It's like riding a rollercoaster, sometimes up, sometimes down! When it comes to the husband/wife dynamic, scleroderma brings out what is already there, whether good or bad and in you dynamic, much good is surfacing. Take care
  23. Heart Echo Test Worries

    Hello Kathy Yep, have the test when you're better. Even with yearly ECHO's and LFT's scleroderma can inflict severe damage. I'm telling you this so that you can hopefully worry less, even when it's BAD it can get better otherwise I would not be here now. In February 2009 my ECHO showed a left ventricular bundle branch block and ejection fraction of 50% (normal 50-55%), BBB's are defects in the heart's electrical conduction system, ejection fraction measures the function of the left side of the heart which pumps blood around the body. I was told there was nothing to be concerned about, LVBBB's were common in society so I dismissed it all. As hindsight makes Einstein's of us all I can now say this was grossly inaccurate, LVBBB's may be common in society BUT in people with scleroderma it can be the beginning of heart involvement and it obviously was for me and I should have been monitored much more carefully. Fast forward to my April 2010 ECHO and I am told I have myocardial fibrosis, LVBBB, LV diastolic dysfunction (eventually global dysfunction) with grade 3 heart failure and with an ejection fraction of 30-35%. Although no doctor would tell me at the time despite frequent requests my life expectancy was then about 2 years. Actually no one was truly up front about how ill I was including myself, I neglected to say I also got out of breath just talking not only upon exertion which would have put me in grade 4 heart failure. September 2010 I had a biventricular implantable cardioverter defibrillator implanted and within the hour could breath easier. The 2011 ECHO showed an ejection fraction of 40-45% but the 2012 ECHO showed it to be 50%! Although I will always be in heart failure because my heart does not function without the device it has done its job for sure! Of course this was a very difficult period with lots of tests, uncertain outcomes and so forth but the treatment worked and here I am. However bad it gets it can get better and I am living proof so please bear this in mind and of course that worrying does absolutely nothing for you other than steal from you time that you could be enjoying! Take care.
  24. Need advice please!

    Hello LMarra Welcome to the forums! You'll be pleased to know that many people have come and gone with exactly the same question, do positive blood tests alone merit a diagnosis of scleroderma? No. Some people have positive antibodies but no symptoms and never develop any symptoms, some people have plenty of scleroderma symptoms having scleroderma but no antibodies so antibodies alone are a red herring. Have a look at our videos diagnosis of scleroderma and difficult diagnosis of scleroderma. Let us know what the rheumatologist says and what instigated the antibody testing? Take care.
  25. Diagnosis is usually the first time the word scleroderma is ever heard and being the word never before heard it brings no immediate meaning. Then symptoms come as a flood of words never before heard, words big, words baffling. Associated diseases, a veritable feast of words never before heard, follow. Questions never before asked take form in the wake of the words never before heard. What will happen to my body? Will it hurt? What will I look like? Will I die? The failure of a quick death following exposure to the word never before heard naturally shifts the focus of the questions never before asked. Will I become disabled? Will my pain be controlled? Will I be able to work? Will I be able to pay bills? We have the words, we have the questions but we have no definitive answers only a jumble of opinions, facts and emotionalism from which to fashion a way forward. Then unexpected, new friendship, a gift that can compensate for much loss. Friendship with some never met, others now familiar, with searing honesty journeys are shared, benefits reaped, the virtual hug employed for those separated by distance. Having all met with the word never before heard, having all asked the questions never before asked, with a determination never before known, we strive to succeed, to survive.
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