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millerscrossing

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About millerscrossing

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  1. For me, its my left hand , although I am riht handed. Every so ofter I get excrutiating pain as my hand contracts inwards in spasms and I jut can't describe the pain.....
  2. Thanks Sherion and Janey for your kind words. Just want to tell everyone to what I already alluded to in the interview: I have been misdiagnosed with Scleroderma. My diasease is one that affect the blood vessels of the lung - originating as an autoimmune disorder, that the pulminologists belive eto be some sort of lupus or Wegeners - so the frustration of certain diagnosis stilleludes me, althgough the pulminologists really do believe it to be one of these two....... Any which way, I still love this forum, which is why I asked Shelley if I could do the interview - you guys are the best, we are all in this together no matter what the autoimmune diasease and no matter where it chooses to strike. I have been out the hospital now for two weeks and three days now and my breathing is still stable. Whether the cytoxin treatment is starting to kick in or the very high dose of steroids I am on, I dont know. I do know that I am eternally gratefull not to be in ICU - it is not a pleasant place to be. Please keep on visiting Care.TV, more bloggers are coming on board and we will of course be covering autoimmune diaseases and related medical breakthroughs whenever we hear about them. May everyone get the good health they are searching for and the peace of mind that just might make that journey quicker James
  3. My pleasure Carrie. I only wish my CARE.TV was more established, (only been live about 4 weeks) so that it would reach a wider audience before getting put away in the archives . Oh well, I guess a follow up podcast in six months may do the trick!!! I do hope that everyone from the Sclero forum gets to read the Q&A. Shelley has some really good words of wisdom for those of us who think we just can't take another day of this that or the other.... Warm regards to everyone here James
  4. Dear all I have not been around alot lately due to the fact that I was battling my diasease in ICU on and off every two weeks or so for the last few months...... Just before I went into ICU, I had asked Shelley if she would be prepared to do a Q&A on the issues relating to scleroderma for my website www.care.tv which offers video interviews on a whole range of healthcare topics. It is inked on this site's scleroderma stories collection page: http://www.sclero.org/scleroderma/support/stories/story-collections.html I was really happy when Shelley agreed. It is now available to be read in full. Please feel free to leave your comments. It would be very much appreciated. Kind regards And of course warm hugs James
  5. Hi guys, A lot has happened since I last posted about a month ago. First off, I have been told I do not have scleroderma. I have a lung alveolar hemarrhage autoimmune disease which means the small vessels in the lungs get inflamed and sometimes burst ....... Botttom line I am off cellcept and on cytoxan and am due a monthly dosage, the next scheduled for the 29th of February. And yes, I have been readmitted to hospital again, although am out for now. Whilst I do not have sclerodrerma, I feel that this forum, the people who offered me hope and hugs during the worst period of my life, I have and will not ever forget and am dedicating the rest of my life - however long that may or may not be - to making a difference. To being a source of suppport to people with ANY moderate or severe illness or disability. To that end, I started a website called CARE.TV which is linked on the main ISN site at Scleroderma Story Collections. It contains interviews that I made of exposees on dangerous drugs by meeting up and discussing them with the victims, stories about where to find support for different diseases such as scleroderma, and will soon have a collection of inspirational videos of how people beat their odds at cancer, or managed to stop smoking etc etc, Shelley - who is a source of inspiration to me, given how she started the ISN from scratch has agreed to do a Q & A interview for CARE.TV followed a little later by a phone interview, downloaded as a podcast. If any of you have any questions you would like me to ask Shelley about scleroderma or about the ISN she founded, please do not hesitate to contact me and I will include as many questions as I can. Best wishes James Barclay
  6. for those who are not covered go to cuba -- your meds will not cost you more than 10 bucks total.... if you are worried about the secret service keeping tabs on your cuba visit - fancy a trip to england its 10 bucks aswell.........still a huge savings plus you get a trip in at the same time..... info taken from the movie sicko and my own upbringing in england
  7. THis diasese!!!! I tell u - it really is a pain!! Getting diagnosed (which for me two rhemies are thinking different auto immune) is hard enough, then once diagnosed we are told that sclero can affect more or less any part of the body internally externally, slowly, rapidly, one part, many parts - the mind boggles - and unfortunately given the scope of chaos scleroderma brings in its wake, any unusual symptoms we displsy we are constantly asking ourselves two questions. 1. Am I felling this pain, seeing this change , or am I just imagining it........ 2. And if I am not imagining it, is it sclero induced or some other cause...... So for me I will use my last symtom as an example, excruciating pain in my hannds for 5 minutes where my thum s kept on getting pulled inwards. Well at least question 1 was ansewered - this was no imagination........One hand was spreadeagled over the other to try and stop the spasms. But the second question, sclero or too much typing???Well thanks to a reply on a different thread, there is some connectionbetween sclero reynolds and spasms, but it has only happened to me once...... So not only is scleroderma chronic and progressive, it is manipulative - How I would love to grab hold of the gene responsible and give it a good kicking!!!!! Millers
  8. i lived in El Mirage AZ until six months ago - I saw a very good rhemy who has dealt with a lot of sclero patients, so knows her stuff. Shi is quite blunt - doesn't mince her words. but that is really what we need most to be honest Her name Is Dr Dimpy Kapoor, her office number is 623 399 9010. well worth an initial consultation good luck millers
  9. I AM A HUGE SUPPORTER OF THE MOVIE SICKO!!!! nice one Sweet..get right back on your soapbox!!! .everything Michael Moore said about healthcare in the uk is true...it is a sad fact that human beings have the right to bear arms n the usa, but no riight to healthcare...the only civilised country in the world.not to have uhc..............America is the land of the free - for those that can afford it!! i am going to start my own blog in the very near future...it is in the design stage at the moment - the blog will cover the issue of universal healthcare in a major way..... i hope some of you get to read and comment on it.......
  10. Brooklyn NY is an absolute disgrace as far as disability parking is concerned.....I can count on my hands the number of disability parking spots for curb side parking and I have been here 8 months... Even shops with parking facilities hardly have a disabled spot - and if they do its like a max of 1 maybe two spots in their entire parking area.... Having lived in AZ, they are really accomodating to disabled people with their badges..... To be fair, AZ has so much more space than snarled up Brooklyn, but still , we deserve better, whether or not we live in a built up city oir not... Rant over!!
  11. kamlesh, these are my thoughts only, i am speaking with no authority here......but I would imagine it would be very difficult for someone to get approved for long term care once you have been diagnosed or even just reported the symptoms you have to your doctor. this is a chronic and progressive diasease, which means a lifetime of problems - and we are a worst case scenario as far as long term care coverage is concerned - so no insurance company in their right mind would offer you long term care i may be wrong, i doubt it though........sorry I have nothing more positive to tell you i can say that in my case I do have long term care, but that is because I enrolled in a plan before any symptoms presented themselves. the insurance company played every game in the book to get out of it, but they knew they couldn't and in the end they had to qualify me. every day I am grateful for this gift from my company when I joined............anyone with friends family should all be encouraged to takre out LTCI, we are all very good examples as to why...... kamlesh...stay in touch , i will pm u soon james
  12. I left out the most important point - alot will depend on the medications you are taking.....alcohol will interact with some in a very negative way, some medications will present no problems.....thats why you should speak with your doctor. Another point to mention is how much...sipping wine at the dinner table may be okay downing shots of vodka and baileys like I did led to one of my first visits to hospital....
  13. STAY AWAY FROM ALCOHOL IF YOU HAVE LUNG ISSUES Esprcially if you have reflex problems - how much I want to have a drink sometimes to escape the realities of my situation - i am not saying thats why you want to have a drink, but that is certainly why I want to .... i tried it two months ago and within two days I was in hospital with severe diffficulty breathing - not worth it.....vodka mixed with baileys!!! of course we are all different people with different symptoms and different meds......so I am generalising.....ask your doctor is my best advice...... ;)
  14. i am on disability, but from private long term care insurance - which thank goodness I got for free when I joined my company in January of 2006 - they are a fantastic company to work for - they really care about their employees ..i would never at 33 have bought it...... the insurance pays two thirds of my old salary but they reduce it if I am eligible for ss....i was denied ss because I hadn't been working in the country long enough - i moved from england and had been working in the us for almost two years, so my private insurance pays my full two thirds of my salary i have similar symptoms to you - hope you are coping........i went through temporary disability through work for six months at full pay - it was during this time that I applied for the private long term care insurance and their standards are pretty much the same - if you can do work of a similar nature to what you currently are doing or did then you won't qualify...if you are experincing anything with your lungs like I am, it will be painfully clear that you qualify......... best of luck keep us updated.... Millers
  15. Hey Sam James stopping by to wish you better....do I know what youre going through! Please make sure your doctors test you for viral infections...my last stay was in a small community hospital..they did not test me at all, just gave me avalox...i got steadily worse till I checked myself out of the icu and to another hospital where they located a viral infection in my lungs called RNAor RVA....attacks those with weak lungs and as soon as I startedthe treatmnent for it, via a gaseous element going into my cpap....i started to recover and now I am ten days out of hospital....feeling better than I have done in months...... some doctors, some hospitals either do not have the bidget or talent to diagnose us.....we must remain vigilent that we do our homework on top doctors and hospitals - it is a life or death decision in my opinion Get well soon, no, get well sooner than that!!
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