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Bobby Dazzler

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About Bobby Dazzler

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    Bronze Member

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  • Location
    Livingston Scotland
  1. Hi Jo, Yes it's been too long without keeping in touch and this time I will not become a stranger. Goodness, it seems such a long time ago that I was a "Newbie" and so many things have happened.( that's for another post as it will be like a 5000 word essay ?? I think I now have a consultant for every part of my body ? I haven't looked at previous posts to get a catch up, but hopefully you are keeping well and I wish Amanda was not having such a rough time. As always if I can pass on any advice due to my own experiences with scleroderma then I will be delighted to do so Take care and I will keep you updated x
  2. Hi Amanda, It's the stranger from Scotland! It's great to see that the site is going strong and it's great to see some of the familiar names and Hello to anyone else who is new to me. In response to your question, yes I have unbearable heartburn and it seems worse since I started the hydroxychloroquine (plaquenil) I am also on 2g Mycophenolate Mofetil daily plus numerous other meds. I currently take 60mg and Ranitidine for the heartburn but it is still bad. They now want me to stop the Ranitidine because I have a lump on the left hand side of my breast and although not that common in males they think that the Ranitidine could be the cause and messing about with my hormones! So as usual it's a game of risks and benefits.(the horrendous pain in the chest versus horrendous heartburn) I hope all goes well with your examinations and I will keep in touch.
  3. Chris, Like me I know you would rather not have the illness that forces early retirement but I am delighted you got there in the end. I know how you feel it is a great relief when its out of the way and you feel that people do believe you. Its the next chapter of your life so good luck for the future and dont be a stranger All the best Bobby
  4. Hi Everyone, I suppose in one sense like us all I am unlucky to have this illness, but in another sense lucky that my employer was very supportive and worked with me not against me throughout my illness since it was diagnosed in February 2009 (if they had only supported me for the previous 18 years !! now thats another story!!) I have to admit my managers, Human Resources and the occupational health doctor played it by the book so it did not cause me any further stress,they had not previously heard of Scleroderma so they had to research the requirements and law from an employers position. They informed me that Scleroderma was covered by the Disability Discrimanation Act and therefore they made reasonable adjustments for me. However even with the adjustments I could not undertake my duties as my illness progressed very quickly and I had to take sick leave. After your sick pay finished as previously mentioned I received employment and support allowance and got the highest rate,I also was awarded Disability Living Allowance for mobility and care at the highest rate and this entitled me to a blue badge etc. I have never claimed benefits before as I have never been unemployed and at first I did not want to claim for anything one because of pride and two because it appeared to me that the benefit system is a minefield and you have to know what your doing. But get the right advice and get everything your entitled too because at the end of the day we did not ask for the illness and we would rather not have to claim benefits but we have too. I had to put my hands up to my employer that although they had done as much as they could to return me back to work I knew that I was too ill to go back. After mutual agreement with managers and occupational health doctor it was agreed to dismiss me on grounds of incapability. I also applied and was granted ill health retirement at the highest rate and would advise that when claiming for anything and your entitlements/working conditions etc that you get a strong supporting letter from your consultant and general practitioner. I have never wanted to claim a benefit in my life as I am a proud man but nor did I want this illness and was in denial for a long time and tried to beat it, but it beat me. I agree with Amanda that although I never wanted this it is difficult to give up your working life and suddendly be in the house 24/7 with your wife (joking ! just in case she reads this!!) but the illness is life changing and you have to listen to your body and can only work within your limitations.
  5. Hi Ann, I also had same problem,I tried various options but recently invested in an portable media player (wireless gizmo, very trendy) and now I can just listen to the books and have the pick from thousand of titles. at first it was strange lying back with headphones on and totally hands-free and listening to the book being read out, but now I am used to it I love it as I feel its "me time" and totally relaxing. I know it can never replace actually reading a book and not for everyone but its just another option. Take care Bobby
  6. Hi Everyone, as it says in title I travelled all the way to London from Scotland for my first appointment at the Royal Free Hospital on Thursday and although very tiring what a beneficial journey it was. First of all can I put anyones mind at ease travelling from Scotland, I travelled by train to kings cross then got the bus (number 46) right outside of station that then stopped at the Royal Free (perfect !!). I First saw Mrs rheumatologist who took all my details and gave me an examination and gave me assurance that although I have my condition that I am not alone and that they were now going to help me. Prof. Denton rheumatologist also examined me and confirmed that although I thought that my symptoms had only been for six months he was confident that I had scleroderma for at least a couple of years as things seem to have settled as skin has softened from previous report from Edinburgh hospital. My mobility is still very poor as my joints are very stiff and sore and I have to see a lung specialist in Edinburgh in a few weeks. I also have to have a colonoscopy as I am having bowel involvement. The medication that Prof D decided on was MMF and Steroids and depending on lung involvement they will review this, so here goes with the next stage of my long journey with scleroderma. After the examination I spoke to the specialist nurse who was great, she gave me so much information and guidelines on how to cope with the illness and she also gave me contact telephone that I can call at anytime. Overall I am very pleased that I was referred to the Royal Free and although I am unlucky to have the illness I am lucky to have such an expert team working with me now.
  7. Hi Alex, I am glad you had a good break.I have just noticed in the last week that I am covered in little brown spots all over my body and a few on my face,they look like freckles and some are bigger than others. I tried to open your picture but got same message that I did not have permission Have A good day and Take care Bobby x
  8. Hi Amanda,Susie and jensue, Has The iloprost worked for me? Honestly I havent got a clue the only thing I noticed was the swelling in my hands went down a bit and of course this pain behind my knee.I went to the general practitioner yesterday and she put the pain medication up from 20mg to 30mg daily plus I was given liquid pain medication that I have to take if the pain is unbearable, It is painfull 24/7 so your guess is as good as mine when to take it without overdosing. My general practitioner is referring me for an ultrasound so hopefully I will get an appt soon as the pain medication aint working and the pain is unbearable.Mrs Dazzler thinks its the hamstring tendons tightening or thickening ? I first had iloprost infusion in April and I was also getting the headaches and flushes even though I had taken the anti-sickness tabs.On the second day I managed to cope with 30ml for about an hour then my throat became very sore and it felt as if my windpipe was closing up.At this point the junior doctor started to panic stopped the infusion and immediately sent me for chest xrays and other tests as she was worried it was a blood clot.Thankfully all the tests were ok and she said it was a typical side effect.They decided to put me on a max of 20ml the following day and I was on that for 2 days and had no problems. In June my consultant referred me back for a second 3 day course of the iloprost infusion as she felt that I did not give the first one a fair chance.I was reluctant but thought being a male I did not want to appear to be a wimp. However I managed to cope with the full course and mangaged it at a level of 50ml each day.The only effect I felt was the pain in the back of my knee tightening up. I have not felt any benefit and will not do it again but I am due to go to the royal free later this month so I will enquire about liquid form Take care and have a good weekend
  9. Hi everyone, I had my first appointment with the physio today since I got out of Hospital 6 weeks ago. I explained to her that my mobility is very poor at the moment and that I cannot stand the pain at the back of my knees, on a level of 1 to 10 my pain is a 10 plus. The Physio informed me that the pain is in the hamstring area and appears to be a vascular problem not a physio related symptom and suggested that I go to my general practitioner. I explained to the Physio that the pain at the back of my knee started during the 3rd (6 hour) session of iloprost infusion whilst I was in hospital. I did mention this to the medical staff at the time but it did not appear to be a matter of concern, however the pain is getting worse everyday and it remains a mystery to everyone as to its cause. My general practitioner has given me pain medication but this does not give me any pain relief at all. The only way I can describe the pain is it feels like an elastic band getting tighter everyday and it feels about the size of a sausage behind both knees. As mentioned above this only started after the iloprost infusion. Can anyone relate to this sort of problem ? Im not sure if its somehow related to the infusion and I am starting to think that the medical staff dont believe me !! Take care x
  10. Hi Monica, I also have all the classic symptoms of Sjogren's with dry eyes and mouth. The eye specialist is reviewing me every six weeks and I have had to get new glasses twice in the last six months due to a significant change in the lack of vision in my left eye. I had never worn glasses previous to diagnosis six months ago. As my specialist does not have a lot of knowledge about scleroderma combined with Sjogren's she is going to seek advice and see me in 3 weeks with a suggestion for meds. I cannot say that I have a problem with sunlight all of the time only occasionaly do I have a problem and it is just too bright. Like Jeannie I also get the itchy skin in the sun that feels all prickly and unbearable at times. I know my advice is not much help but I can relate to your symptoms Good Luck and Take Care
  11. Hi Everyone, Thank you all for the advice and support given to me. I am glad I plucked up the courage to start posting on the forum and will continue to do so. Hi tricia thank you for info, I am going to Hampden Park in Glasgow next Saturday to watch Scotland playing football in a world cup qualifier,so I am sure I will get a lorra lorra laughs there :rolleyes: then come home in tears :angry: Have a great day.
  12. Morning all, its a sunny day here in Bonnie Scotland now take note of this date as it doesn't happen very often this year. I would just like to say thank you to all of you for getting back to me and for the advice that you have given it means a lot to me and My Wife as we realise that we are not alone in this world coping with the Illness on our own ( sorry girls yes I do have a wife I had to be upfront in case you were all booking flights to come to scotland to see me I think if you saw me you would have stayed at home anyway ;) On the subject of my wife She has been fantastic as I think a lot of the time it must be difficult for her. The diagnosis of the systemic/scleroderma has changed both our lives for ever and she constantly cares for me 24hrs a day, she cooks for me, helps me fasten buttons, puts my socks and pants on for me, dresses me, takes care of my toilet difficulties does all the chores, in fact does everything. She is also my emotional sounding off board and has had to put her own life on hold. I think all the partners of people with any Illness deserve a medal because although it may be expected to be there for your loved one it must be very diffilcult and they need care and support as well, I count myself as a very lucky man to have such a dedicated wife but sometimes I don't want her just to be my carer but I want her her back as my wife and lover etc. I am a very proud man who never asked anyone for help in fact people always come to me for help. Even when diagnosed I would ignore the advice to ask for help, I was in denial that I had a illness and would do it myself. But the day has arrived now I cannot kid myself on anymore I cannot do it myself so I have to ask for help from others outside the house. It is hard to adjust to the change but I am getting there. It is demoralising for me to ask my wife to help with toilet issues. What I have realised is this when true friends and family come out of the woodwork the genuine ones are the ones who really care. Anyway I think we should all turn to our loved ones and give them a big hug for all that they do and put up with. I now have a decision to make as I have already mentioned its a sunny day in Scotland, do I go out in my Kilt or my usual duffle coat and gloves !!!!!! Have a great day.
  13. Hi Jefa, Thank you for that. I think I must be having a major senile moment. I saw the post Royal Free Hospital started by Bobby Dazzler and thought someone has pinched my topic :angry: then I remembered that was me I think I should go and take my medication and have an early night ;) Lots of Hugs
  14. Hi Amanda, I think I am having one of those senile moments ( please dont tell me thats also linked with Sclero !! only joking ) I have went into the my controls section, edit profile then got page that shows aol identity,yahoo identity etc. and dont know what to do next. Hi Joelf, sorry I didn't say hi in previous post but your post was not there when I submitted mine, thank you for advice and if you have appt at the Royal Free in September who knows we might meet up. I was thinking of flying down to London but although the train will take longer it would be better for me to leave and arrive in city centre as my mobility and breathing are bad and hanging about airports and arriving outwith city centres would be too much for me. Re travel costs, I have no problem in covering costs myself. I am currently on sick pay at work although they are pushing me for ill health retirement. Things like travel costs, benefits are all new to me as I have never been unemployed before or claimed for anything However people are always telling me to claim for this benefit, claim for that benefit and although I may be able to claim and maybe I should it just a constant reminder of my Illness and it just another thing to cope with
  15. Hi Janey, Amanda and Peggy, Thank you for replying to my post and for the encouragement and help that you have given me I think one of the hardest parts of this illness is that I spend all my time explaining and educating others about Scleroderma so it is great to communicate on this site and be able to relate with others and not to have to explain. At a recent hospital appointment a nurse was writing down my details and asked me where I had been on holiday ( I also have hyper pigmentation all over my body and I look very tanned and dark skinned ) she also commented on how smooth and young looking my skin was around my face and asked if I had had botox!! I explained that I had not been in the sun never mind been on holiday and that my skin was tight around my face because of my condition. Now wait for this..... her reply was " your so lucky to have a tanned body and such smooth skin without having to spend any money obtaining it " I will leave it to your imagination on my reply to her comment. I then proceeded to explain and educate to her about scleroderma as she had never heard of it before even though she worked in the department that was treating me. Thankfully the consultant had heard of my condition and then asked " have you been somewhere nice !!! " Unbelievable !!, I constantly get asked the same question as I do look tanned and my skin is smooth but sometimes get fed up repeating the same story and wish I could hand out a pre printed explanation of my illness as at times I get fed up listening to my own voice. I feel like getting a tattoo on my forehead saying " This is not a tan " I am so glad that I have found the courage to start communicating with you all and now I have started hopefully you dont get fed up of my posts and think "oh no its that mad scotsman again !!!" I feel so much better now so I am thinking of changing my user name from "Crying Scotsman" to "Bobby Dazzler" Is this possible to change the name, if so can you advise on procedure. Bless you all and have a great day :)
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