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Amanda Thorpe

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Everything posted by Amanda Thorpe

  1. Computers - Love/Hate Relationship

    Hello All If my ISP knew what I really thought of them and could hear the mutterings under my breath they'd have cut me off. That you have to rely on someone you can't understand and has a checklist to go through is mega frustrating. My ISP just apologise constantly when you phone them as a way of pacifying you, it just infuriates me as they don't answer a question they just apologise! The best thing was hanging on the phone for 20 minutes to just get cut off as they'd closed for the day! I feel lost if I can't use my laptop! :huh: Amanda
  2. Congratulations, Jeannie McClelland

    Hello Jeannie Just read this post and I am so glad you've got this job! You're so helpful, generous and funny which I think is so important. Take care. Amanda
  3. Where did your skin thickening start?

    Hello All My skin thickening started as a small patch on my right shin that sat there for about 3 years then started growing, appeared on the left shin then down to the ankles and both feet. It appeared on the wrists and forarms next, midriff, hands,thighs, upper arms and shoulders. I am told this is atypical as it usually starts with the hands. I think the thickening lasts during the active phase which I think is 3-5 years? The interesting thing about sclero is how everyone can be so different therefore one person's progression may be totally different from anothers. Take care Amanda
  4. New personal record, 11.5 hours of sleep

    Hello KD I clocked 19 out of 24 hours once, in the early disease stage. I still sleep a lot now and I don't try to fight it because it will only be worse the next day. Fatigue is a major issue with sclero so we will sleep more, if we can. Catching some zzzzz's is my favourite pastime. Take care. Amanda
  5. Cellcept: When does it start to help?

    Hello Anderson I was told that it took approx 3 months before cellcept started to work and something certainly help my skin and it can't have been anything else. That your skin is still tightening shows your disease is very active and the cellcept may not have kicked in yet. I would have thought it unlikely that cellcept would make your skin worse. Speak to your doctor for confirmation and hang in there. Amanda
  6. Hello All My question is how does amitriptyline cause weight gain, does it increase your appetite so you eat more or does it just turn you into a walking fat magnet? Will I have to avoid mooching past bakeries lest all the sticky buns fly my way and attach to me? Will sweet shops be a thing of the past lest I end up covered head to foot with sweet products? Or does it make me a sponge so that my body soaks up all moisture around me and converts it into additional inches around the waist? Am I going to have to change my sign on to "oh boy, what a hefalump"? Amanda
  7. How does amitriptyline cause weight gain?

    Hey Jensue from here on we should refer to ourselves as hefalump and blob! There's a comedy duo in there somewhere! Snowbird I had thought that my migraines were practically gone as for 2 weeks hardly anything but then all of a sudden I had about 5 days of one coming and going. It got so bad I was beginning to think renal issues but I'm still here so guess not! I have upped the dose of the amitriptilyne and will see how it goes. I have not yet put weight on because of it and don't want to. I have returned to a UK size 14 and am actually happy as I am BUT I don't want to get any bigger. Oh Penny I had forgot the creme puffs....dribble...drool! Well all in all I thinks is rather unfair this weight gain thing particularly when it's outside of our control. It's not like we decided to eat for England (in my case) not exercise and expect to remain as we are! We have to take the meds, have physical restrictions to excercise beyond our control and have enhanced appetites...oh the injustice of it all!! :D Take care. Amanda
  8. Question about Morphea

    Hello Connie Welcome to the forum! When a doctor says "live with it" that actually means "I have no idea what to do and don't have the guts to say so!" Yes we have to learn to live with our conditions because they are incurable BUT they are treatable. There are things to help manage the symptoms brought on by the morphea and hoepfully others with morphea will be able to advise you. Take care and look forward to more of your posts. Amanda
  9. How does amitriptyline cause weight gain?

    Thanks Jeannie! I think I'm going to look more like Carmen Miranda's pinapples than her hat. Omeava, good point, I had not thought of that! Piper, crave carbs, are you serious! Could'nt be something heathly could it! I just know what the general consensus is going to be! So which name should I choose? Oh boy what a hefalump I am a fat bloater Fat magnet in operation Chow down wide load Who ate all the pies, I did Pass me another one, never mind I already ate it You look like chicken tonight Oh the injustice of it all! Amanda
  10. Question about Morphea

    Hello Monica Welcome and please keep us informed of your progress. Please also bear in mind that blood tests are just part of the picture, they can be helpful but aren't necessarily the be all and the end all. For example most people with sclero have a positive ANA (anti nuclear antibody) but then some don't so blood tests alone should not be the only diagnostic tool for sclero but rather a combo of symptoms and tests. As you say rarely does morphea develop into sclero and I trust your diagnostic combo will confirm this. Take care. Amanda
  11. Pulmonary Hypertension

    Hello Jeannie Echos sure are interesting aren't they! I'm glad the catheter showed better actual results for you than the echo. Take care. Amanda
  12. Rheumatologist appointment this Monday

    Hello Penny Imagine us all there, behind the rheumatologist so you not she, can see us pulling faces, sticking our fingers up and being generally juvenille every time she says something you don't like. Alternatively as suggested take a vocal friend. Either way please let us know how it goes. Take care. Amanda
  13. Hello All You may remember that recently I posted about having had my lft/echo tests the indications of which were that the results would be good. My assumption was that I had yet again scraped by being initiated into internal organ involvement. Well today I got the results on paper, the lft results are a bunch of numbers that mean nothing to me, the word "normal" scrawled at the bottom I do understand. So far so good. Well today I got the results on paper, the echo results are a bunch or words in doctor speak but even I was able to discern the meaning of the words "blockage" and "dysfunction". In an attempt to understand the rest of it I googled the results and had my sister (midwife) speak to a doctor friend in order to get a general consensus of the results now. You see my rheumatologist doesn't even know I have had the tests done, he thinks I am still lingering in an NHS queue, good thing I am not. Of course for the definitive answer I will fax the results to him tomorrow and speak to him on the phone. In the meantime I have "left bundle branch blockage" (apparently worse on the left side) which interferes with the electric impulses in the heart and causes the right and left side to be out of sync. A causal factor is "sclerodegenerative diseases" and I am guessing this is my cause as it surely ain't any of the others! I also have left ventricle (apparently worse on the left side!) "diastolic dysfunction" which means that when the heart is relaxing (not contracting) the blood in it that has come from the lungs regurges (if there is such a word) eventually back into the lungs and can cause pulmonary edema, elevated pressure in the LV. DD can demonstrate an increase in interstitial collagen deposits and again I am assuming this is why I have DD as none of the other causes applies. I do not have and have never had high blood pressure or high cholesterol, don't smoke, used to exercise regulalry and have no previous heart issues so it has to be my friend and yours Scler O Derma that's caused the BBB and DD. How ironic my plan was to NEVER have heart issue like dear ole Ma (2 heart attacks) hence the healthy lifestyle! :( She does have high blood pressure, cholesterol, smoked for years and never exercised. What is concerning is that my last echo in October 2007 showed no issues and now 16 months later there are issues despite having been on cellcept. To me this is a clear indication that my disease is still progressing and has gone internal, interestingly externally it's all gone quiet. Now I know why, it's been busy elsewhere! :angry: Oh yes, anybody know what "E prime is low at 5cms/sec" means? No, me either! I've no idea whether low is a good or bad thing. I will let you know what my rheumatologist says in due course meantime laugh it up...if you remember in my first post when I predicted good results I said about laughing if the real results said otherwise! Amanda
  14. Ooops I made a boo boo...time to laugh out loud!

    Thanks for the replies! Jeannie, well found! I don't suppose it gave any indication of what the normal range was? I don't know if my low number is good, bad or ugly. By the way I have yet to tell Ma because I know she'll go coastal, hysterical not angry. She lives next door and I just know she'll be coming over all the time to a) see if I am still alive B) try to do everything for me. When first diagnosed she used to come over and look in on me when I was sleeping during the day to make sure I hadn't snuffed it! :) I am 40 Ma! Amanda
  15. Hello Debi Usually I would begin by welcoming you to the forum but it is more important for me to say - your pain doctor is living in la la land if he thinks ulcer pain is all sclero causes. Do please tell him, as he admits to knowing nothing about sclero, to NOT comment on whether or not it causes pain! :angry: Suggest instead that he aquaints himself with this forum and educates himself in respect of scleroderma, then he can make educated informed comments, something he is yet to do. Welcome to the forum, this is a great place to get help and advice and we're glad you've joined. Chronic pain is a sclero symptom regardless of what type of sclero you have, diffuse or limited etc. Scleroderma can effect the skin, muscles, joints, connective tissue, gastrointestinal tract, bowels and internal organs. I'm not Einstein but even I can figure out there's an "ouch" in there somewhere! The good news is that there are meds to help manage the pain. There is a list of sclero experts on this site so you can find one near you because you need to see a rheumatologist who is a sclero expert. Your pain management guy is a classic example of how detrimental it can be to deal with uneducated doctors. You need a doctor who knows how to help you because you can get help with pain relief and disease progression. Fatigue is another familiar symptom that we struggle with and some here take meds to help alleviate some of it, so again help is there you just need someone who knows what they're doing and it don't sound like you've got that so far! See if you can access a sclero expert near you so that you can get a care plan in place to treat the disease (incurable but treatable) and help manage the symptoms. The good news is that the phase you're in can pass, it can get better. I also have negative ANA, it don't mean diddley! Take care. Amanda
  16. Ooops I made a boo boo...time to laugh out loud!

    Me speke no englasie!! Greek or Hindu sounds good to me and I love the translation! Amanda
  17. Congrats, Carrie Maddoux

    Hello Carrie Well done and it was great to chat with you today! Amanda
  18. Might have CREST

    Hello Lynne, What a great opportunity, not only to help others but to make sure you get excellent care. The more the medical community know, understand and realise, about sclero the better off all of us will be and those coming after us! Have a blast! Amanda
  19. Updating

    Hello Jaxs I'm sorry that whilst you've been away you've gotten worse. :( Skin issues can really drag you down, if you think about it our skin is our largest organ so when it's effected boy do we know about it! There are creams, lotions and antihistamines that can help with soreness and itching so don't think you just have to put up with it. Ask your rheumatologist what they recommends. Bowel issues are not nice to live with and how generous of sclero to give you the full spectrum all at the same time! There are also various things to help bowel issues that your rheumatologist could recommend. Sometimes I think that we assume we just have to grin and bear with it when sclero throws something else at us. Although we can't cure a symptom we can do things to make it more bearable. I don't know where you're based in the UK but some hospitals have sclero nurse or Raynaud's nurse advice lines and they are very helpful for quick ad hoc advice. Alternatively keep pickin' the brains of this forum! Take care. Amanda
  20. Blood results

    Hello Jill I know that someone else will come in with what you're actually asking for, an explanation as to what the numbers actually mean because I can't help you there. What I wanted to say is bear in mind blood tests are only an indicator and are not the be all and end all. Many people with sclero such as myself have a negative ANA so on that basis our blood tests tell us very little really. I know that at this stage everything can be alarming especially if taken in isolation so try and view the results in the wider context. You'll get more factual posts from other shortly I've no doubt. Take care. Amanda
  21. How to handle difficult family members?

    ...it's just dawned on me who Marvin the Martian is! I used to have a Marvin mug and liked his attitude, he wanted to blow up the earth because it blocked his view of Venus, I think it was Venus. He was always getting very, very angry!!! He'd have dealt well with difficult family members, he'd have blown them up, no messin' as they'd make him very, very angry!! Amanda
  22. Mortality high in systemic scleroderma with PH

    Hello Mark I am sorry you are having so many health issues all at once! That you were once "in the trade" will help you be a better advocate for yourself as you know what should be done and what to insist be done for you. As you were a nurse perhaps your doctors are being more open about your prognosis and maybe this comes across as if they're resigned to a particular outcome. I hope that you post more because we would like to support you and get to know you better. This forum is a safe place where you can be honest about your hopes and fears as there is always someone feeling or has felt the same thing. Take care. Amanda
  23. Clumsy with trouble gripping things...

    Hello Dawnies Welcome to the forum. :) I don't have Sjogrens and can't say I'd want it, it sounds very uncomfortable to live with and manage. As Shelley has already said get a doctor to evaluate your hands as it could be anything. I do understand that having one autoimmune disease you would wonder if there is in fact another one lurking and whether the Sjogrens is actually primary or secondary. As far as my hands go they're pretty much gone! I have diffuse SSc and have the curled fingers thing and no movement in the wrists. This was not my first symptom and although I now have raynauds this did not come on first either. My sclero journey started with my legs and feet then the upper body joined in the fun. You've no doubt read that everyone's sclero journey is different and you may never have one, I hope. Take care Amanda
  24. The "Everything Free" Diet

    Hello Penny Tout this as the new diet fad and you could make a small fortune! Of course the task would be making it appetising, you could do an "emperor's new clothes" type thing and convince people that there's more on the plate than beansprouts, lettuce accompanied by water. I am just starting to get gastric issues :( and don't much like it so can't imagine what it must be like for you. By the way I meant to say in my reply to difficult family members how brave it was of you to talk so openly and calmly about possible amputation, amazing. Take care Amanda
  25. Aches, dry eyes, and female stuff

    Hello Lucy Never apologise for posting because whatever you are experiencing someone else is or has and we love the opportunity to share with and learn from you. :) I also have IC (interstial cystitis) which is an autoimmune disease, if you're frequently getting cystitis like symptoms it may be worth investigation. IC is not caused by infection but by a breech in the lining of the bladder causing the urine to seep into the muscle wall resulting in pain etc. A cyscoscopy can diagnose it and it can be treated with bladder instillations via catheter or oral meds. Alternatively if it is bacterial a urine sample is supposed to be tested to see which antibiotic is actually needed rather than a random one being prescribed. Try to avoid acidic drinks/food like orange juice, cranberry juice (yes), fresh tomatoes etc, caffine and alcohol can also make it worse. Drink plenty of water as already suggested. For other feminine itch issues avoid using soap and soap products altogether as soap can cause thrush and no you won't be well odourous as a result! Take care. Amanda
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