Jump to content
Sclero Forums

Amanda Thorpe

SrSupportSpecialist
  • Content Count

    2,995
  • Joined

  • Last visited

Posts posted by Amanda Thorpe


  1. Hello Sclera4evr

     

    Oh yeah, it's not long before you ditch the fantasy that all doctors are great and patient listeners when you have scleroderma, that's for sure!

     

    Getting a diagnosis and finding your "voice" are achievements worth celebrating. Unfortunately many people, especially women, are made to feel they're hypochondriacs on the way to diagnosis.

     

    Well done you and welcome to the forums, keep posting and take care.


  2. Hello Ron,

     

    I hope you don't mind me asking but how long after the scleroderma did you develop OCD or did it come first?

     

    You're quite right, of course, we can't just blame everything on scleroderma, we first have to be sure that it's the cause or catalyst.

     

    Take care.


  3. Sorry QF, that's rough, really rough. Don't you sometimes feel like your life has become the stuff of the daytime TV movie? That you're in some true life, made for the small screen drama, struggling through injury and injustice, disability and disempowerment to just die tragically at the end? I certainly did post diagnosis because my life had and was changing so unbelievably that most people had no idea and nothing in common with me anymore.

     

    In reality most people will only ever read or watch the challenges we face daily, played out by actors. After all, it's not like these awful circumstances befall real and wholly ordinary people. Is it?

     

    Well QF, it's a good thing that you're so tenacious, as it happens many with scleroderma are.

     

    Now would someone please get that camera outta my face!

     

    Take care.


  4. A cure sure would be a great thing, no more people suffering the shattering effects of this disease on their lives and the lives of their loved ones. 

     

    I do wonder how it would help those of us already living with the disease? A cure would not reverse the damage done to our bodies, at best it would stop us from getting worse but it wouldn't give us anything back or would it? Now, if you're reading this and thinking "total bummer, shut up!" remember it's just my musings. I do wonder if a whole lot of additional good could happen if there was some monetary focus on practically improving the lives of people already living with scleroderma. Here in the UK there are cancer charities that focus on exactly that but not one scleroderma organisation exists anywhere solely for the purpose of practically improving the lives of people living with it. 

     

    How many of you, post diagnosis, were left to get on with it after an out of date leaflet was shoved into your cold, stiff hand, yes I know that sounds corpse like but think sclerodactyly plus Raynaud's. Imagine a leaflet for an organisation that provided free counselling for you/loved one, a nursing team, financial aid, information about work, benefits, disability rights, mobility aids to name but a few. When I was diagnosed there was no local face to face support and I didn't even know that my National Health Service (NHS) has a Wheelchair Service until after I had bought my first manual one and was already talking to a charity about getting a powered one, I'd been using a wheelchair about 3 years by then. For those of you abroad, the Wheelchair Service assesses the need for and provides wheelchairs but it's proper poor, it's been known to take so long to provide a chair that by the time it has the recipient already succumbed to their disease! The NHS has improved some of its targets, for example the time you wait for initial referral or cancer care but typically disabled services are still a shambles! 

      

    Anyways, back to scleroderma, most people stumble around finding bits of help here, some there and for many nothing at all. I found most of my support via sclero.org! Yep, most of my support comes from an organisation that's not even in the same country as me! It's a good thing that the support and the information here are first class for sure. A cure would be great, of course it would and we should never stop working for one, but to me it seems to be pursued at the cost of something equally as important. Personally I'd like more.

     

    Take care.


  5. Hello Mothergoose

     

    That's great news! When you go to the Royal Free scleroderma is NOT housed within the rheumatology clinic, as per usual but is housed within the Immunology clinic. It's a relatively new clinic and has phlebotomy on site, it's a lovely light and spacious reception area with a TV and coffee vending machine. All the mod cons!

     

    Do let us know how it goes and take care.


  6. Hello Mckenzie

     

    Welcome and I'm with Shelley, eczema is not that simple, it's more than dry, itchy skin. If you have eczema then it will take more the applying cream sporadically to get it under control.

     

    Not fun having anything itchy on the feet that's for sure and I hope Shelley's suggestions help, no doubt you'll find more following the link.

     

    Take care.


  7. Shelley Ensz you saucy minx! How fabulous, dodging the oxygen and other obstructions!

     

    You're so right, the most difficult thing when I became I'll was the inability to demonstrate how much I love my husband. I used to do so many practical things for him, from ironing his shirts to serving breakfast in bed. Nowadays I am able to do a few things for him again but have had to accept, as has he, my limitations.

     

    Bend or break and we have found that we're a very bendy couple! All aspects of our relationship are different nowadays and yes, we think better!

     

    Take care.


  8. Hello Mothergoose

     

    What is worth bearing in mind is how you'd feel now if you had not been on these drugs for a year. They could have masked a flare, a more permanent increase in symptoms. In other words you don't know how bad you'd feel if you were not taking the medications in question.

     

    I am on pregabalin, back in 2013 I was on 200mg three times a day. After coming out of hospital and being unable to swallow and keep much down, I decided to take the opportunity to try and reduce my medication. I cut the pregabalin down to 100mg twice a day and am still okay on that level...just! Maybe cut down rather than just stop and one at a time otherwise you won't know what's what.

     

    I understand wondering whether medication works or not but reality is that you're going to be on medication if you have scleroderma. It's also worth considering what life would really be like without the luxury of medication, the full cost of which we don't pay thanks to the NHS. I know that statement is not really a consideration but I do wonder if it ought to be.

     

    Anyways, if you want to cut down go for it but do one medication at a time and slowly. I probably shouldn't say this but I did not tell my doctor until after I had cut down. I did this in case they were not receptive or helpful and let's face it, they're sometimes not. I have to recommend that you do so under you doctor's guidance however.

     

    I forgot to say that I tried hydroxychloroquine and found it reduced my fatigue and pain, unfortunately I had to stop it because it caused abdominal pain. I tried it twice but the pain defeated the point, why swap one pain for another!

     

    I hope this helps and take care.


  9. Hello Ron

     

    My mother has terminal heart failure and has had two episodes of pulmonary edema and it was frightening seeing her having difficulty breathing. She has had four heart attacks and we reckon that if there is a number five it will be the last one and lets face it, that's preferable to, as you say,  to suffocating to death. I appreciate your frankness, I don't see the point in beating around the bush either.

     

    Take care.


  10. Hello Eoinik

     

    I am not surprised to find out that UVA-1 devices are rather expensive! It's good news that your boss will let you have the treatment twice a week and I wish you well with it.

     

    Let us know how it goes and take care.


  11. Hello Julia

     

    I thought that Rheumatoid arthritis caused joint deformity whereas scleroderma does not. Both cause joint pain and swelling but I think that only RA causes actual deformity of the joints, especially and most recognisably the hands. 

     

    As Jo has said you can have both but one will be as an overlap to the one that is the main disease and any disease had as an overlap does not present all of its symptoms. In other words one will be worse than the other!

     

    I would not fret too much about what will happen before you see a specialist because the specialist can't put the brakes on your disease anyway or cure it. 

     

    I hope this helps and keep posting.

     

    Take care.


  12. Hello MotherGoose

     

    I am with Jo, you're right to see the doctor because I have never heard of what you describe in association with scleroderma. I have heard, as women do, that bleeding after menopause is not normal and merits a doctor's appointment.

     

    Please let us know what happens and take care.


  13. Hello Ron

     

    I had SOB back in 2009/2010 but from heart failure. I got out of breath in conversation and moving around the house was all huff and puff. I already used a wheelchair outside because of mobility issues, had I not, I would have had to because of the SOB. I remember having a 6 minute walk teat before I had my biventricular ICD in and boy, oh boy! Why it never occurred to me to say "actually I can't do this because I am in excruciating pain and I can't breathe!" I'll never know.

     

    Anyways, it's a difficult symptom that can be helped with less activity and maybe oxygen until such time as you see your specialist? I know my cause was very different from yours but I remember that it was unpleasant and made me feel debilitated. It's one thing being debilitated, another to feel it.

     

    I hope this helps.

     

    Take care.


  14. Quiltfairy, two heads and all that...can you raise the concerns on behalf of your neighbour as well? The more evidence you have the better but I appreciate this may be the last thing you want to have to do. It's exhausting for us to just keep ticking over so anything on top of that can feel Everest-like in proportion so please remember to take it steady. Remember as well that emotional upsets, like being angry, drain our battery and very quickly.

     

    Please keep us informed.

     

     

     

    Take care.


  15. Hello Dee

     

    I was just discussing this very issue with two other ladies with scleroderma a few weeks ago! Thank you, thank you, thank you for having the courage to actually posting your concerns. You would be amazed how common this problem is but few feel able to raise it.

     

    My husband and I have been together for over twenty years and our "ripping each others clothes off" phase has passed, quite naturally and of its own accord. Let me say that we totally enjoyed it at the time but that's just not where we are at now, I am nearing 50 and he is in his 60's and we just want to do things differently and as I've said countless times different isn't necessarily a bad thing.

     

    Of course there is one essential to adapt to the problems scleroderma causes in this area and that's a strong, loving relationship underneath. The first year after my diagnosis, my husband and I weren't physically intimate for a year, an entire year. Now I know that some people would see that as a free pass to go play in another field at worst and indulge in self pity at best but we had none of that because of the quality of the underlying relationship. When I first became ill and Michael tried to find other caregivers it took a good few years before he succeeded, finding initially that many woman had been abandoned and many men windowed. Tragedy, disaster, disease just bring out what is already in the relationship.

     

    So for us the intimate part of our life was changing anyway, that it had to continue to change because of scleroderma didn't therefore seem that alien. I know that we both feel this part of our life is now more meaningful, more emotionally intimate and even more about the other person. Our faith has always helped us keep this part of our relationship in context, even during the "ripping each others clothes off" phase we saw it as an expression of the relationship not the focus of it.

     

    Finally a euphemism, let's just say that there is more than one section on the menu and maybe it's time to check out the starter or dessert courses rather than just ordering from the main courses? At least you still have a menu to choose from, some don't even have that. I know you know the importance of remaining physically close, talking openly without blame and without self pity and to focusing on what you do have.

     

    Thank you again Dee for raising this issue and I hope that you and your husband find a way through, he must be very proud of you and vice versa.

     

    Take care.


  16. Sorry Quiltfairy, that's just disgusting. Having said that, people are so different that some people think that level of um...er cleanliness is okay! Some people do, as the saying goes, live like pigs and they're allowed to in their own home not the home of someone else! 

     

    I hope you get a positive response and a new worker, keep us posted.

     

    Take care.


  17. I happen to live in the UK, a place where discussion of the weather is part of the national lexicon because it's usually dismal. Think rain, sleet, cold, cloud, all framed by a colourless, gray sky and you got it. Although it has warmed up the last 15 years or so, our summer can still span just a matter of days or weeks, rarely if ever months. However, this summer we are experiencing a heatwave, which yesterday saw temperatures up to 37° degrees with temperatures predicted up to 27° degrees for two weeks. Oh, yes, and humidity of up to 54%! That's the real killer, the humidity!

     

    You would think this good news, that a country with a usual two day summer would revel in the heat and indeed some people do but I reckon most do not. You see we are really poor when it comes to coping with extremes of temperatures. Example, National Rail, trains fail to run in the fall because of wet leaves on the line, because of snow in winter (when we get it) and in extreme heat the track buckles? What does that even mean? That commuters are stranded on a regular basis because of the weather. During winter, offices are too cold, the open window becomes a battleground, in summer, offices are devoid of air conditioning with fights over desktop fans, maybe that was just the office I worked in? Coffee shops full of "Sweaty Bettys" queuing for bottles of water and scalding hot drinks, thank goodness that most banks, department stores and clothes shops are air conditioned!

     

    Ahh, but let's see what this means for people with scleroderma and Raynaud's as we're also poor at coping with extremes in temperature. My Raynaud's is mild, incited more by stress than cold, but I know that air conditioning plays havoc with Raynaud's and it's on full blast in many places. What a contrast that ice cold inside now is to the hot outside, a recipe for a Raynaud's attack if there ever was one. I also know that most of us struggle with the cold, but not me! Oh, no I have to be one of the exceptions to the rule! Since becoming ill I have been a "hottie", wearing maxi dresses in the winter and now, on top of being a "hottie" I must factor in my age and the hormones it brings (or is it takes away?) and I am having a total and complete sweat fest. One country's heatwave is this woman's hot mess.

     

    Yesterday, the hottest day of the year thus far, I was supposed to go out with friends for a meal, to celebrate my earlier birthday, and instead cancelled. I could not function, sweating profusely and feeling exhausted, I spent the entire day asleep (with the fan on) because I couldn't actually keep awake. Today I rearranged a hospital appointment because of the heat, the clinic is in a portacabin, an airless, suffocating portacabin, so I slept all day again instead. Tomorrow is supposed to be hot as well and so forth and so on so wake me up when this heatwave is over and it's cool again! Oh, for that colourless, gray sky!

     

    Take care.


  18. Hello Trinity

     

    What's the phrase, knowledge is power? Or how about, know your enemy? Take your pick!

     

    It does help to know your disease and boy is it a confusing one! It took me ages to get the gist of the different types blah, blah, blah and then the symptoms, a never ending list of potential disasters, which would I have, which would I dodge and so on. I found asking questions and reading this forum, as well as the site itself, a user friendly way of picking up information.  

     

    Please post your questions as they arise, enjoy the site and we look forward to getting to know you better.

     

    Take care.


  19. Hello Mothergoose

     

    Excellent! As far as I am aware there is no good reason why either could refuse to refer you. You have scleroderma and the Royal Free houses scleroderma experts so your request is based on clinical grounds so and I don't see how anyone could refuse and on why.

     

    Take care and keep posting.


  20. Loose crystals?! Quiltfairy, I'm amazed you don't have a loose head, one that just kinda swings around of its own accord after that! You did well to survive for sure. No doubt you manage the repercussions with your usual aplomb. 

     

    Take care. 

×