Jump to content
Sclero Forums

uknlv18

Members
  • Content count

    152
  • Joined

  • Last visited

Posts 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. 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 spells.

     

    Thanks for the support everyone and I agree Amanda; it is shifting sand. It has been one thing after the other with me lately and it seems when one pain or problem is resolved then another crops up. On the plus side they say my toes are healing nicely and I am only going to lose a portion of my second toe, about to the bottom of the nail, and a little on the back of the third toe. But keeping the toe nail. No more pretty nails in sandals. but with the Raynaud's sandels were rarely an option anyways :lol:

     

    I have been having up and down moments lately; for some reason I have been able to deal with everything that has happened fairly well except the heart thing. It has thrown me for a loop. My biggest fear is that I will be unable to fly anymore due to all these new issues and not be able to get back to the States to see my family. But I have found a driving route, I have to go to Russia and drive across Syberia and take a ferry across to Nova Scotia and then down through Canada and then to America. Piece of cake!! :lol:

     

    I will consider the Rituximab once everything settles down a bit. I am hoping for at least a month of no new crisis'. I forgot to post a picture of my toes from the last time I posted. I will see if I can upload them now.

     

    Here's hoping for some warm weather, still cold here and wet.

     

    Cheers

    Jean


  3. 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 things.

     

    As I said I am so happy everything came out negative, it must be a great weight off of your mind. And we have plenty of other things to keep our mind busy we don't need extra stress.

     

    Cheers

    Jean


  4. 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 of half an hour when the doctor on the ward called to tell me that one of my blood tests came back positive for a heart attack. Was a bit shocked to say the least! Down to A&E, evaluated and nothing showed any signs of a heart attack but they admitted me anyways. More tests later and they are still not positive it was a heart attack or something caused by my MCTD. What they say I have now instead of just Scleroderma.

     

    I'm due to have an angiogram on the 20th of this month, and a bit scared at the moment. I hope it doesn't hurt too much and everything checks out okay. I had debated on not having it as two of the Cardiologist said it wasn't a heart attack and they were fairly positive it was caused by the MCTD, but I figured I need to know for sure. So I will soldier on with another test. They noticed a thickening in my colon when I had a MRA (magnetic resonance angiogram) in March so had to go through a Colonoscopy while inpatient, and let me tell you that was no fun. Bad enough to have to sit on the loo non stop for hours at home, but when you have one toilet and 6 people it is really difficult. It all came back negative, so no problems there anymore.

     

    Whilst inpatient this time they have told me that they want to give me Rituximab, I don't know much about the drug other than what they tell me and what I have read about it. Have any of you taken it and if so have you taken it for awhile and does it help? And also have there been any long term side effects from it? The doctors of course tell me it is a wonder drug and I would be mad not to have the treatment. But I don't always trust them and have seen in the past where medications were said to be fantastic, only to have bad side affects over long term use. So any help from you all would be greatly appreciated.

     

    To be honest if it would at least lesson my symptoms and let me have some of my life back it would be worth it. My quality of life has gone in the toilet, I can't get out of the house at all unless in my wheel chair and I get so tired I can make about three hours of awake time and then have to sleep. And when I am awake I am so dizzy I can hardly do anything. I have told my doctors about it and they just say it is the medication and I need to persevere! It is incredibly frustrating at the moment. And if we could just have a bit of warm weather so I could go outside would be wonderful. That little bit we did have here I couldn't go out of the hospital room and could only look out through the window at it.

     

    Well thanks in advance for any help with the Rituximab and hope you all are keeping warm!

     

    Cheers

    Jean


  5. 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 :lol: ! 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 will be on Warfarin for life now. Does anyone take this and have you had any problems traveling, especially in planes for long distances. My flights to America are usually 14 hours long, excluding time spent in the airports.

     

    Jean


  6. 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 every day probably millions of times. But they said they looked it up on the internet and she was sure it was fine. It wasn't. I got my treatment due to some necrotic toes (they turned black) it helped with that quite a bit. I also have fairly bad Raynaud's and at the bottom of my finger nails it swells up and gets quite painful. It helped with this but it hasn't really lasted very long, I am getting the swelling back and it has only been a couple of weeks since my infusion. So I think I would have to really think hard about whether I want to go through it again. Best of luck with whatever you decide!

     

    Jean


  7. 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 feet without getting so out of breath I would get spots in front of my eyes. For once it wasn't just attributed to my weight and they said that my heart was pumping my blood into my lungs too quickly. Which I found funny as nothing I do is very quick :lol: There wasn't much they could do about it.

     

    The pain in my leg resolved after about two weeks, but then it started up in my toes of my left foot. What a nightmare! After two days of horrible pain three of my toes turned black. I went to the A&E and was seen and referred to my rheumatologist Clinic. I was admitted immediately and they started giving me my first Iloprost infusions, which I was a bit scared of having read on here some of people's horrible side effects. I was okay with it, just a bit of nausea until the 4th dose; I had been moved to a different ward and I do not think the nurse knew how to mix it properly. Very bad headache and nausea. This helped my toes though and they also gave me two infusions of steriods and started me back on oral steriods.

     

    Three weeks in hospital later and so many blood and other tests that I felt like a human pin cushion! They are still not sure why I got it, the pain in my leg was caused by a blood clot, but the toes are a mystery apparently. Some kind of blockage occurred but they dont know why it did and if I have to look forward to it happening again.

    During one of my tests in hospital they discovered that I had a thickening of the wall of my bowel in one area, so they are investigating it to make sure it isn't cancer. I had my CT scan yesterday and go back to my Specialist next week for the results. They are fairly sure it isn't cancer as my blood tests haven't shown anything. They think it is probably a symptom of my MCTD and my immune system attacking my bowel. Got my fingers, eyes and toes (Oh wait better not do the toes as they may fall off!) crossed.

     

    I have now been told that my condition is Mixed Connective Tissue Disease not just Scleroderma and that more than likely I will have to go on the immune suppressant medication to try to control things. I was wondering if anyone else took these types of meds and if so what can I look forward to. I know everyone is different but some ideas would relieve my mind a lot.

     

    I am doing much better now though, still got three black toes but that will be that way for awhile they say until the new skin pushes the dead skin off. Really looking forward to that, NOT :lol: Hopefully I won't be walking around and notice a toe on the floor hehe

     

     

    :emoticon-bang-head: Jean


  8. 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 something awful lately and cannot make a fist anymore. No more punching bags for me I guess, will have to do open handed slaps from now on hehe. I was referred to have Iloprost, but I decided against. I have been so sick for the last 5 months or so that the thought of taking something that might even slightly make me sick, (which we all know it is usually worse than slightly) was more than I can bear right now. And my fingers aren't that bad at the moment, touch wood!

     

    And yeah some friend, I do not wish ill on anyone but there are days when I think if I could just give people like that a day in the life, boy would they be in for a shocker!

     

    Still smiling and crawling around, have put everything I need upstairs for now, microwave, toaster, food and so forth so I don't have to walk to far to get things when I am here alone. This has helped tremendously. As I am no longer on water and yogurt all day!


  9. 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 more issue, seems to just be one thing after the other, get one item cleared up and another one takes it's place. <Sigh>

     

    I had a 'friend' tell me to just deal with things, it could be worse, which of course I know this, but it still doesn't make what I deal with daily any easier. But this is something I will learn to deal with I'm sure. As I am not ready for the alternative yet :lol:

     

    Thanks for the support as always, and I plan on hanging around a bit more as sitting is what I do best these days hehe!


  10. 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 good news, no Pulmonary Hypertension! But still struggling to breathe, so not sure what to do about that one. Got a call into my Connective Tissue nurse to see if I can get in sooner or they can suggest anything to help.

     

    While in the hospital the bottoms of my feet started to hurt. Just on the heel and the pads in the front. Was a bit weird, but now they feel like I am walking on glass. No pain killers are helping and I was wondering if anyone else had this happen to them? I have calcification in my feet, and I guess maybe it is because the steroids are all out of my system now as I have been off of them for two weeks now. If anyone has had this issue can you suggest anything that might help, it is getting almost impossible to walk. I do it as I still need to get to the bathroom and stuff. But dang does it hurt!

     

    I am also having trouble with my muscles in my arms, shoulders and hands. Everything just aches all the time. I feel like I have gone ten rounds in a spin dryer. :lol:

     

    Well that is all of my issues at the moment. Thanks in advance for any advice.

     

    Cheers

    Jean


  11. 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


  12. 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 shower after the fall, and it was tough, was scared witless lol Shook like a leaf for about an hour after but I did get in with my hubby's help and out. But the wet room will make all the difference! But it did help my mood to be able to get wet all over and not just a sponge bath.

     

    That must of been terrible Amanda, with the chair; I'm glad your husband could get you out okay. Hopefully they will replace it quickly so you can go back to nice long soaks. I too find to just sit and have a good cry helps me quite a bit. A lot of my problem at the moment is the Raynaud's attacks, my cuticles look like they been in a grinder. I went and had a haircut and a colour today and that has lifted my mood. I decided to splurge today and let the hairdresser do my colour instead of me doing it and it turned out fantastic. I went a dark purple/plum with blonde highlights. I also went out and bought my holiday, Anniversary and Birthday Present all rolled into one. It is a well known brand Stand Mixer and it will be a great help with my baking and stuff. Gonna make some bread tomorrow and break it in! Can't wait.

     

    Don't think I could do Zumba, Jo; looked at it a little and I think they would be taking me out on a stretcher after 5 minutes :P and Judy, I had a pedicure today, which was great; I love the foot massage you get with it. Don't do the manicure anymore as my cuticles are so bad; it would probably scare my poor nail person to death hehe

     

    Thanks again for the uplifting comments and stories, it has helped me a lot. Off to look at recipes for cakes and bread to use on my new mixer!

     

    Take care all

    Jean


  13. 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 whether I should go ahead with the bath conversion to a shower or just have my hubby help me get in the bath and hope that in the future I can go back to regular baths. See can't make a decision or do anything productive. Bleh I think I need a vacation from my house. But I want to save the money for the bathroom.

     

    Well done moaning and all that, hope everyone is doing as well as they can be and better then normal!

     

    Cheers

    Jean


  14. 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 expense? I have a pretty small bathroom so will probably have to get one of the smaller baths that the water comes up to your waist and not the one you can lie down fully in. I am going to a shop this afternoon to look at some but was hoping someone could tell me if they use them. You can get them with jets in them as well, and that is appealing to have a little spa in my bathroom for those many days when it feels like every bone in my body is aching.

     

    The other option is a shower with a seat, I have had Social Services come out to look at the bath and they say the only thing they can do is a wet shower. Not to sure about those, looked at them online and also during one of my hospital stays that is what they had there. Not the prettiest of things hehe, but if it means no more sponge baths then that is what I will have to do. But with the new cost saving climate these changes are now means tested, which means I will not qualify I am pretty sure. So I am going to be looking at regular showers, as the seat is completely necessary, and I am sure it is considerably cheaper than the walk in bath.

     

    I have been saving for some time to have my bathroom re-done so I have the money for the walk in bath, just a little leary of spending that much money if it isn't very good or doesn't do what it says on the tin! So any helpful information would be greatly appreciated, and thank you in advance.

     

    Cheers

    Jean


  15. 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!


  16. 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.


  17. 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 times and I start doing the things I was told, and come on here and vent a bit ;) . And I can soon get myself feeling better, if not completely great but a lot better.

     

    Here's hoping the new year brings some good things your way!


  18. 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 6 weeks of relative inactivity sure does make a difference! As always you all help me to feel better and kick myself in the rear end and get myself back on track. Thanks again.

     

    Cheers

    Jean


  19. 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 tried various types of creams that heat or add cold and they dont really seem to help. It is in my shins and calves and it seems to be worse after sleeping, when I wake up I can hardly walk for a bit then it kind of calms down.

     

    My left hand is constantly numb these days, well the tips of the fingers are always tingling like when your hand goes to sleep. I though at first it was because I was having to use it more due to the fractured right arm. But it is still doing it now that I have use of my right hand more now? Is this something to do with the Raynaud's? This is new to me. I get the numbness but usually after the fingers have gone white, then blue. Not continulously as it seems to be now.

     

    My last question is about my teeth. I have had two teeth break now and am being told that it is due to the Sjogren's and Scleroderma. My question is do any of you UK people know if the repair of the teeth could be covered under the NHS as it is caused by my medical condition instead of it just being a dental issue? Just wondering as I have been told that crowns cost about £500 each and I don't have that kind of money these days. I used to work for insurance companies when I lived in America and if a problem with your teeth was caused by a medical condition then it was covered under your medical insurance and not your dental, just wondered if anyone knew if that was the case here in the UK?

     

    As always any help and advice would be greatly appreciated. Have been having a very bad month health wise and have been doing little more then being up an hour or so and then back to bed. My weight has bloomed back up due to lack of excersise and just moving in general as well as the steriods. Getting into one of my bad mind places and am struggling to keep my glass half full, feels pretty much empty these days :crying:

     

    Cheers

    Jean


  20. 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


  21. 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.

     

    They told me that the doctors would do another PFT and Echo and if this showed whatever it shows for Pulmonary Hypertension, then they would insert a catheter into my leg. I must admit after that it all goes fuzzy as my brain went into panic mode and all I could think about is they want to cause me more pain. :crying: Has anyone else had this catheter test done and if so can you give me an idea of what to expect and how much pain it will cause?

     

    They are taking me off the steroids as well, which is good as I have put on two stone in the last two months as I eat everything in sight! I'm trying to not eat, but it isn't helping that I cannot do any exercise at the moment. The added weight means I am really struggling when I try to do anything. I have got back on track for the most part with eating less, but the bottomless pit that is my stomach makes it very difficult. And I am a little worried about going off the steroids as last time I reduced them my breathing became very bad, but they said I could use inhalers if this happens again, so hopefully all will go to plan this time and it won't be so bad. :unsure:

     

    Cheers,

     

    Jean


  22. 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

×