Jump to content
SCLERO.ORG
Sclero Forums

uknlv18

Members
  • Content Count

    152
  • Joined

  • Last visited

Everything posted by uknlv18

  1. Hi all, Haven't been around in ages. Just thought I would pop back in and see how everyone was doing. Haven't really been doing any types of forums for awhile as I was getting a bit depressed by some of the stuff. But that issue has been resolved, really busy with many new craft projects and I just got a new wheelchair so am able to get out and about much more now. Good to see many of the same faces are still here. Not looking forward to the cold weather but have all my stock of cold reducers to hand. Hope everyone is doing ok. Cheers uknlv (Jean)
  2. Just wanted to say I posted pictures of my toes, they are a bit better than this at the moment. But this is what they started like! It is in photos under the album spetakeran?
  3. Thanks for all the replies, I am still scared of the Angiogram but I am dealing with it better now. I really want to know what's up and to be sure my ticker is going to keep on ticking. I can live without a lot of things but a heart is not one of them hehe. I had a Cardiac Nurse around on Monday and she went over everything with me and what to expect. So although I am still scared I figure it isn't any worse than some of the other tests I have gone through. And hopefully all will come back negative and I can cut back on some of the heart medications as I think they are causing the dizzy spel
  4. That is great news Amanda, I had the same issue when I had a lump on one of my breasts and it wouldn't go away. They did an ultra sound and it was inconclusive and I had the same thing, too young and no risk factors. But I did get my mammogram which came back negative but to be sure they took several biopsies and they were negative as well. There is nothing more frustrating then when your doctors dismiss your issues as if they were irrelevant. I would like to have them go through a couple of days of what we go through as they wouldn't make it a whole month! And then see if they say the same th
  5. Hi all, Well I am back again, have been in and out of hospital again. One of my necrotic toes got infected very badly and I ended up in hospital for 14 days getting IV antibiotics and strong oral antibiotics. At the end of it all the antibiotics made me quite sick, had severe stomach pain and they ran a bunch of tests to see if I had had a heart attack. This all happened Sunday night and Monday morning, they gave me some IV anti sickness medicine and it cleared up the stomach upset and pain. And a bit of peppermint water. Old remedy but it really helped a lot! Well I was home a grand total
  6. Thanks for the information, I will read the links you gave Jo. I got some pictures of the toes, not the falling off bit yet though ! They found I was anaemic whilst in hospital as well and they have me on iron supplements. Which have helped a lot with my general tiredness and run down feeling. I actually get things done around the house now! Well most things, the toes still complicate issues. Have missed everyone here and hoping to get back into chats as well. Will keep you posted on results of tests and such. Oh, one more question. It was also determined that I have sticky blood and I
  7. Hi Inkedup, I live in West Yorkshire and get my treatment from the Connective Tissues specialists at Chapel Allerton Hospital. For me they have been wonderful, and I recently was an inpatient and had my first Iloprost treatments. Whilst I was in Chapel A they went really well; due to complications caused by a blood clot I had to be moved to St James Hospital and continue my Iloprost treatment there. Like Amanda I think I had an incompetent Nurse do it and I got very ill from it, headache and nausea. They were unsure how to mix it and I said they should call the Ward at Chapel A as they do it e
  8. Well I can finally get back to my computer following a nightmare two months! Hope everyone is doing okay and I am hoping I can get back to coming on regular and get to working on the things I have from Amanda. I haven't forgotten them, just haven't been able to get to them. :rolleyes: My breathing had gotten really bad and I was sent to Sheffield 2 months ago to have a heart catheter to see if I had Pulmonary Hypertension. Which I did not have, good news but I still had trouble breathing. I was taken off of my steroids and everything just went down hill from there. I could hardly walk 10
  9. I got my chair from the NHS Amanda, special order and brand spankin new! I was most definately surprised. I was referred by my Rheumatologist to Occupational Therapy and they ordered me one straight away. Maybe it was the crying and so forth in the doctors office about not being able to go anywhere and being housebound. Which was all true, except the crying bit, hehe But it has made the world of difference to my life, I can now go shopping and do things that I could never do before as I couldn't walk any distance. I'm hoping my hands don't get much worse, the skin has tightened up somethin
  10. Thanks Jo and Amanda, I looked at the links. And I am putting Ibuprofen gel on my feet, well my hubby is. I have been wearing really thick slipper socks and slippers for added cushion. I have also been applying heat to the bottoms of my feet, which seems to keep the throbbing down when I am not standing up. That first up out of bed in the morning is the worst! I also have a wheel chair, and like you Amanda they gave me an assisted one as my hands weren't strong enough to move myself around. I have a walking stick and use it when shuffling through the rooms. Just trying to deal with one mo
  11. Hi everyone, I haven't posted in a while as I have been very sick lately. After the arm fracture things just went a bit downhill from there. They have been lowering my steroids and I am now off of them completely. And although I know all the side affects of them, I want them back! I haven't been in this much pain in a very long time. I have been having major breathing problems and have just got out of hospital following my right heart catheter, it was not so bad. Was terrified but I had a terrific doctor who chatted to me through the whole thing and it was over before I knew it. Bit of
  12. Well I have Rheumatologist, Dermotologist, Neurologist and an Orthopeadic doctor but I don't think they go by any type of ologist in Ortho! Jean
  13. Hi Kamlesh, I had accupuncture a couple of times, it hurt when they put them in but I was told it was supposed to give you a 'zing' that showed they were in right. I had them for my chronic back pain and they did help me. It didn't last as long as I would of hoped and it was a bit expensive as they wanted to do it a couple times a week and it adds up. And mine wasn't covered under any insurance as they felt it was an alternative medicine. But I would say give it a go and I hope it helps you! Cheers Jean
  14. Thanks all, I have decided to wait out the council and have them do what they are going to do, then if I need to add anything I can. Looked at the baths and we went to a showroom that actually had some and for the price it isn't worth it. The wet room will be best in the long run. I have got some new exercise programs for my game and am starting using them. It is a bit hard at the moment as my legs feel like lead from lack of use, and my back feels like it might break if I do even a little. But going to take it slow, 5-10 a day for now and work up as I feel better. I took my first sho
  15. Hi everyone, Well winter hasn't even really started and I seem to be going into hermit mode already. I can't seem to get the motivation to do anything lately. Part is because I keep having terrible Raynaud's attacks and my cuticles are looking like they have gone through a grinder. And as I said winter hasn't even really started yet. So I thought I would do a bit of a moan and see if anyone had some good suggestions to shake me out of my poor mood! Been trying to get my head around my first project and just stare at the screen and watch my cursor blink. And I am still debating on wheth
  16. Hi everyone, Hope everyone is feeling as good as they can be at the moment. I have a bit of a dilemma going and need to ask you well informed people your advice :D It has got to the point that I am no longer able to get myself into my bath. I can't lift my legs properly to get in and this contributed to the recent falling event that I have had. I am looking to do a replacement bath, was thinking of getting one of those walk in type baths, as I would still like to be able to take a bath. But they are very expensive and I was wondering if anyone here had them and if they are worth the e
  17. I had Morphea for about 4 years, and it just recently got diagnosed as that when I was diagnosed with my Scleroderma. I had a biopsy done on the patch on my right wrist and under my arms. The patch on my wrist got cellulitis quite bad in it, so all I would say is make sure you take good care of the biopsy spot as we may be more susceptible to infection. Mine got infected after it seemed the patch was pretty much healed. Best of luck to you with your Morphea!
  18. Hi all, I am having a real bad time with my Raynaud's at the moment. I think I got my first little ulcer on my right index finger. It's a little slit almost like a paper cut and it hurts like the dickens! I also ordered some gloves with pockets that can hold the hand warmers I got. Silver gloves also work really well for reflecting heat back into your hands. I wear them by themselves in the summer time and under other gloves in the winter.
  19. It sounds like someone needs a big :emoticon-hug: or two. And you have every right to moan! Hopefully the side effects will taper off with your medications and you can at least not feel so sick from that. Maybe try just taking one class to start with, to see how it goes next year. And also I would suggest talking to a Pyschologist about the depression issues. I was seeing a Psychiatrist regularly for mine and they just kept upping my meds. I worked with a Psychologist and he sat with me and helped give me some really great alternative ways to help with the depression. I still have my dark time
  20. Thanks everyone for the suggestions. And it may be Carpal Tunnel, I had surgery on my right hand many years ago and the symptoms do seem to be similar. Just didn't think about it. I am going to check into the Dental Hospital here in Leeds, not sure what you need to do to be seen there. But it is worth a try. Anything to save some money. Have had all my credit cards and such paid off for awhile. After I lost my job I scrimped and got everything paid off that was possible. Don't want to add debt again if I can help it. Am feeling a bit better, started doing some exercises and boy is it hard lol
  21. Hi all, Been awhile since I posted, since fracturing my arm about 6 weeks ago, I have been having issues with the arm and it has been difficult to do much of anything. My arm is doing better, but they have started having me reduce my steroids, which is a good thing, but it has meant that my skin problems are acting up now. I get red patches that the doctor says are Scleroderma rashes, the muscle underneath wherever these rashes appear gets really hard and it is very painful to the touch. Not the skin but the muscle. Does anyone know of anything I can do to help reduce the pain? I have tri
  22. Thanks everyone , looking forward to it. And hopefully in two weeks will be quicker at it, as I am hoping will get told I can start using my right arm again!
  23. Thanks everyone, that makes me feel a lot better! I will not dread it as much now. Had my appointment with orthopaedics today and they say my arm is healing well, and can probably get to be able to start moving it in two weeks. Which is most excellent news! And here is a big hug to everyone for helping to relieve my fears. :emoticon-hug: Cheers Jean
  24. Hi All, Well I got a new appt with Rheumatology last week, due to my complaint about the horrible appointment I had. I got to see the good doctor as well as my Consultant. And boy what a difference. My pulmonary function test (PFT) came back pretty much the same as the time before, but my echo showed that my lungs are providing back pressure on my heart. So they aren't sure if I have developed Pulmonary Hypertension or not and have referred me to specialists in Sheffield to have more tests run. It will be about two months for the tests as they need to wait until my fracture is healed
  25. Well my luck is going from bad to worse, I decided to start this week off by doing a nose dive in the bath! I broke my humerus and was stuck in the bath. Had to be hoisted out as I couldn't move. What a nightmare! And now I can't use my arm and am in pain to add to all the other issues. Makes me despair sometimes, but as they say what doesn't kill us makes us stronger. Jean
×
×
  • Create New...