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uknlv18

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Posts posted by uknlv18


  1. Thanks Everyone,

     

    I feel a bit silly not thinking of these things! At the time I was just sitting there like a deer in the headlights! Part of it is because I am overweight as well, but there are ways around it. The Gynaecologist seemed to panic when I told her I had Scleroderma and what not. She is going to be consulting with a more senior consultant, as she was a locum so probably isn't there for long anyway, and is giving my notes to the aneasthetist. One can only hope that they will look at everything and come up with the right choice.

     

    I had a colonoscopy last year and was given sedation and I didn't feel a thing and was awake and fine through the whole procedure. I am going to insist on something like this or if they feel I need to be under aneasthetic then I am going to suggest an epidural. I am by no means squeamish and a bit of a ghoul as I love to watch when they do things, freaks some doctors out :lol:

     

    Thank you all for your support and the smack up the back of the head to stop me panicking and make me think of options! :emoticons-thankyou:

     

    If worst comes to worst, I have an aunt who is a retired sister and I will bring her along to make them see some sense!

     

    :emoticon-hug:

     

    Jean


  2. Hi everyone

     

    Well I just got back from an appointment with the Gynaecologist and no I am not one of the lucky ones going through early menopause :emoticon-crying-kleenex:

     

    I went due to problems with bleeding and pain that have been ongoing for several years, after many pills and hmmmm's we dont know what to do, they have decided I may need surgery. 20 years ago I had the lining of my uterus removed because of endometriosis and bleeding and pain and I am one of the lucky few that have had portions of it grow back! Weeeeeeeee So now they want to insert a uterine coil or perhaps permanently remove the lining of my uterus. I am 47 and why they just won't take the wretched stuff out eludes me!

     

    But due to my many problems arising from my Scleroderma, they are very concerned about how I am going to react to anesthesia, they are afraid I may not wake up. So have been given several options that are dependent on results of various assessments by anesthesia and other doctors.

     

    Option 1 is to go in and have surgery where they will look around and see what is going on, take several biopsies. Because of my first surgery to remove the lining, scar tissue has formed and has pulled my uterus in half, they want to cut this so that my uterus goes back to normal and insert the coil. I will then be put in ICU to be watched for several days to make sure my lungs start working back to normal, well what is normal for me.

     

    Option 2 is to have everything done as an outpatient, which means they will use a syringe and squirt some local anaesthetic into my uterus, wait for a bit and hope that it numbs things enough that I won't be in too much pain while they take the biopsies and do the cutting. I have had many biopsies in the past while they were trying to sort out what was wrong with me and had one 2 years ago here, where they discovered the condition of my uterus. And they HURT!! I have withstood a lot of pain in my life, even before the Sclero, I have 4 tattoos and have had numerous tests done that I was told don't worry it won't hurt that bad! But something tells me that cutting scar tissues isn't going to be up there on the fun things to do this summer list.

     

    Part of me just thinks to let it go, I will go through menopause eventually and have lived with the pain and heavy bleeding for about 2 years now, and since I no longer have to worry about work, I can lie in bed with loads of pain killers and sleep until things settle down. Part of me says lets get it over with and hope it is all fixed and I am not debilitated 7 - 10 days every month, but I am more than a bit scared. I remember the pain of the biopsies and am thinking the cutting of the scar tissue is going to be worse. But I also don't want to go through the hassle of an in-patient stay and all that. I have a BIG aversion to hospitals and am more than a bit OCD about germs that are there! :lol: Having to share my room with 6 or more people just makes me ill thinking about it.

     

    I can always hope that the outpatient option will be really quick and won't be too bad. Shame on my body and lungs anyway, I want life back to where it was simple and Mom and Dad made all the decisions hehehe

     

    Jean


  3. Hi Indy

     

    I get the little red 'pimples' on my arms on occasion, and get tiny little bumps on my fingers as well. In my case they are both reactions to different soaps, as my skin is sensitive and has been for a really long time, so in my case I do not think they are anything related to my Sclero! I make sure I really rinse my hands well after using soaps and always by the soap for sensitive skin. The veins I have no idea, I can't see mine due to all the layers of fat in the way hehe!

     

    Welcome to the forums!

     

    Jean


  4. Hi Caz

     

    It was a bit of both, I used to work in the Medical Education Department at the local trust and have volunteered for my Lichen Sclerosis and now my Scleroderma for the student doctors there. I went to my general practitioner for something else, my back I think lol, so many problems I forget which it was sometimes! And told him about the article and he asked me if I would come in. But Im sure if you suggest it to your general practitioner they would be more than happy to have you come in, they are always looking for unusual things to teach, and there isn't anything more strange and unusual than a case of Scleroderma! hehe

     

    Jean


  5. Hi Angel Sky

     

    I am fairly new to these forums and to Scleroderma as well. I was recently diagnosed with Limited Systemic Sclerosis/Scleroderma in January, and boy has it turned my life upside down! So I can definetly relate, I have some skin involvment with my Scleroderma though and I do have that ripple affect in some of the areas. I have thickening of the skin on my wrists and under my arms, which my Dematologists says is caused by the Scleroderma. It can get quite painful and swells up and the skin around it seems to ripple. I have Lichen Sclerosis as well, which causes painful lessions and sores in the groin and rectal area, as well as causing the skin to become very thin and I treat this with a topical ointment and I use this on the areas where I have the thickening of skin when they become painful.

     

    I can also relate to your depression, I suffer from it chronically as well. I was working at a job I loved up until May of last year, at which time I was let go due to health problems caused by the Scleroderma, although at the time I thought everything was a result of the Lichen Sclerosis. Going from feeling important to sitting at home and staring at the walls and just feeling sorry for myself all the time has been incredibly difficult. I can talk myself out of it at times and feel all right and ready to take on the world and make all the changes I have in my head that would make life better, but then a bad bout of the Scleroderma hits and I start getting pains and cramps in places I never thought you could get cramps, or I can't get away from the loo because of gastric problems and I am right back at square one for the depression!

     

    I have suffered from depression caused by a chemical imbalance all my life and have seen Psychiatrists and have found, for me, that they aren't always helpful as the ones that I have seen just want to up my depression meds until I am a walking zombie, Night of the Living Dead in Leeds LOL! I'm sure this is not all Psychiatrists though just the ones I saw. I had given up getting any help until I met a friend whose husband was a Psychologist and boy what a difference, he talked to me and helped me with techniques to help me get through the depression and face the reasons I have it! As I said I have been having bad bouts of depression now since the diagnosis, and thought I could just go back to the techniques that I learned and it will be all right, but I guess Scleroderma is a bit more than the chemical imbalance, as it wasn't helping any. I have been referred to a Psychologist, as I requested this, and have been getting a lot of help, it helps to talk to people that you don't care about, as with me I feel so guilty for what I put my husband and family through that I don't want to whine to them about my problems any more than I already do! It may seem hard at first but once you get there and get talking it all just spills out.

     

    I really hope that things start looking up for you and there are more positives than negatives in your life! And know that there are people here that care and are willing to listen and it isn't whining here as most have gone through this all before and that getting help from someone on the outside often helps you to get a new perspective on things! And if you want to 'talk' to someone you can always PM me :emoticons-i-care:

     

    Sorry for the book this just really hit home for me and I thought I would share and heres a hug to help!

     

    :emoticon-hug:

     

    Best wishes

    Jean


  6. Hi everyone,

     

    I'm not sure if you are all aware, as I wasn't until recently, that you can get a prepaid card for your prescriptions in the UK from the NHS. It is only £10.00 a month and you present that card whenever you get your prescriptions filled and that is all you do, nothing else to pay. It has been a life saver for me with all the medications that I take monthly now. You can get a form at the pharmacist and there are no special criteria to be on it, they just say if you get more than 3 prescriptions a month it works out to a savings.

     

    Hope this helps some.

     

    Jean


  7. Hi everyone

     

    I wanted to say that I did get the spray for my throat, and once I can get past the weird taste and texture, I think it will help. At the moment I use it and gag for about 15 mins LOL! I have a test coming up on Thursday and I have to fast with no liquids or food for 12 hours; it's gonna be a rough night, when my mouth gets dry it causes me to cough terrible, so not looking forward to it. I keep telling myself it will be worth it if they find out what is causing all my abdominal pain.

     

    Jean


  8. Hi Everyone,

     

    I just wanted to post something I just discovered, some of you may already have something similar but I thought I would share. :VeryHappy:

     

    Since the Raynaud's I have been following doctors orders to make sure that I wear my gloves whenever I handle anything cold, so getting in the fridge or freezer, I slip on my gloves and get whatever I wanted out, and then proceed to drop it on the floor or have to rush to the counter to not drop it! I have to hold milk and things like a two year old, two handed so I don't spill or drop. It has become rather annoying, and also when I prepare meals often times the meat or veg is cold and I do not wear my gloves as they will get all messy, so I have to be very careful as my hands go cold and numb quickly and wealding a knife is a tad dangerous. Then of course you start getting those wonderful cramping pains that we all know and love!

     

    So to my point (finally hehe) I was talking to a friend and basically whinging on about my above problems and he suggested that I try builders gloves, as they are designed with rubber grippers on them already! I looked into them and found them quite cheap on the internet and ordered a pair of the thinner ones, and they are great! They don't really keep my hands warm but are roomy enough for me to wear my thinner liner gloves underneath for warmth and they supply the grip I need, and as they are all a thin rubber like material on the whole underside of your hand they are fairly waterproof and easy to wash! :terrific:

    They dry really quickly as well, I admit they are not a fashion statement but I don't plan to wear them out and about, I had someone suggest riding gloves as well and I looked into those, they are definately prettier than the builders gloves, all soft leather and such with little gripper spots on the underside of the hands, but they were considerably more expensive. I may look into those for the future to use when I go out and about so I can grip things better when wandering amongst other people, but for a cheap and cheerful solution to dropping things the builders gloves work a treat! :happy-dance:

     

    It is warm and sunny these last two days so going to go out and enjoy it while it lasts, hope these help some of you and that everyone is well as can be and able to enjoy the nice spring weather!

     

    Cheers

    Jean


  9. Hi Pat,

     

    I get cramps all over, feet, toes, hands, fingers, torso, abdomen, thighs, calves, and the weirdest place in my chin area! Was told it was caused by a Vit. D difficiency and am on supplements now, which help a bit. They are not every time I move anymore but I still get them, if I get cold then it is worse. Lately I have been getting bad cramps in my knees, and it makes it difficult to walk. I try to drink plenty of liquids and also eat bananas as that seems to help as well.

     

    Jean


  10. Hi Everyone,

     

    Just wanted to let people know that an article is running this Wednesday in the health section of The Yorkshire Evening Post about scleroderma and Raynaud's to help raise awareness. My ugly mug will be in there, but thought it might be interesting and any stuff that makes people more aware of scleroderma and Raynaud's and all the problems it causes us suffers is a good thing!

     

    Cheers

    Jean


  11. I have a friend that sent me an article that said if you are on steriods if you reduce your salt intake that it will help with the weight gain problem, not cutting it out all together as we need salt to live, but to reduce it wherever possible. It worked for her but if you are not on steroids then I do not know why you are gaining weight it could be simply as stated by others that you are not moving as much as you used to. Hope you find some answers

     

    Jean


  12. Hi everyone, hope everyone is doing well this weekend.

     

    Well I have decided on what I am going to make on the day of the party, going to make a creamy pasta salad with brocolli, tomatoes, peppers, and parmesan cheese, and pasta of course hehe. Then I am going to make an Italian pasta salad which should be nice and tangy, doing it with lighter oils so it is less calories, and am making little tomatoe, mozzarella and basil tarts, and lastly going to make little bread cups and puff pastry cups and fill those with some mushrooms, cream cheese and onion for the vegans and then mushrooms, bacon and chedder cheese in the others. What do you think, do you think those sound like good finger foods?

     

    Oh I also found a recipe for marshmallows and coloured sugar, so I am going to make up a bunch of marshmallow chicks and give them away at Easter time to all my friends! Got to keep busy hehe.

     

    Jean

     

    Oh and I changed to a Spring background! It is coming I know it :emoticons-yes:

     

    Jean


  13. Hi Ann, I had the same thing when I had a really bad cough/flu, it is very scary as you can not seem to get in a breath! The steam seemed to work the best for me and making sure I slept well propped up or sitting up stopped the choking in the night, it is that nasty phlem going down your throat that chokes you. I would suggest lots of orange juice for the vitamin C as long as it doesn't affect your stomach badly. My brother always eats really hot peppers to open up his sinus when he is sick, but that would make me even worse with the stomach! Hope you start feeling better soon!

     

     

    :emoticon-hug:

     

    Jean


  14. Thanks guys and also thanks for the ideas; so far I am going to do two types of pasta salad, a potato salad, tomato/mozzarella/basil tarts, and I saw this on a program once so gonna try it before I commit; you take slices of regular bread, cut off the crust, press that into a muffin tin, brush with butter and bake and it makes little crusty pouchs and was thinking of filling them with mushroom/cream cheese/and some salsa. But I need more so thank you both so much for the ideas, keep 'em coming, my brain is not what it used to be so I need all the help I can get! hehe

     

    Jean


  15. Hi Sherrytrifle,

     

    I have had several colonoscopies, and the ones I had done in the states they gave me nothing and I found them painful, but in the UK they gave me concious sedation like Jeannie mentioned, and I was awake but felt no pain and it was over quickly. You will have a bit of gas possible after the colonscopy as they sometimes inflate your bowel and intestines to see better. The nurse I had tried to talk me out of the sedation but I held to my guns and I would not do it without it if I had to do it again, such a difference!

     

    Cheers

    Jean


  16. Hi Everyone,

     

    Well I had an appointment today with my new Dermatologist and I thought I was going to be given some type of autoimmune suppressent to help with my Lichen Sclerosis. I have had Lichen Sclerosis for 6 years now, apparently it was caused by the Scleroderma but that was never diagnosed. I have been going regularly to a Dermatologist since this all started 6 years ago and was told that I needed to lose weight at every visit and if I had not lost enough the doctor would be annoyed with me. I asked if it would help with my LS if I lost the weight, and was told no it won't affect it at all but you will feel better. And when I why I have constant flair ups and pain I was told to go home as there was nothing they could do, needless to say I switched Dermatologists, thinking that this would help. Well after three years of being told that what I was doing was he right treatment and that the ointment I was given is the only thing for it, that I would just have to deal with the monthly flair ups and constant pain the rest of the time, I was diagnosed with the Scleroderma.

     

    I was then referred to a new Dermatologist who works in conjunction with the Scleroderma doctors as skin disorder is so common in Scleroderma. He examined me and said I was not bad enough to need medication and that all this time I had been doing my LS treatment wrong. I had to apply the cream for two weeks, then a week off, then two weeks and when I had a flair up I needed to apply the cream for two weeks even if the symptoms subsided. If I did this he was fairly sure that I would not have many problems with my condition, I was not applying the treatment long enough to get down in to the lower skin. Well imagine my surprise as I had been told that I had to limit my application of the cream because of the steroids, I told him this and he said normally that is true but with Scleroderma the skin thickens underneath the top layer of skin and the steroids help to thin this, which is good.

     

    I suppose I should be thrilled that this may be a big help and keep me from having constant pain and bad flair ups every month and I am really, I am just so angry that no one else has ever said this in the last 6 years. I lost my job due to these problems and have not had a day in 6 years without being in some kind of pain from the Lichen Sclerosis, it is just so frustrating that the other doctors couldn't think to try this and see if it would help instead of telling me I was too fat, just deal with it, it happens sometimes!

     

    Sorry for the book, I am just so angry because this has really put a wrench in my life for so long and to think that something so simple may of made it better. I suppose I could say it may not of helped but to have the chance to try it would have given me so much hope and saved a lot of heartache and depression. Thanks for listening, rant over.

     

    On the upside I have been asked to help cater a party for a friend, which I find really nice as she said I am one of the best cooks she knows and it would be great if I could cook something up for her party! I need suggestions for cold finger foods if anyone has any really great ideas!

     

    Cheers

    Jean


  17. Hi Lori, I have it tuned to DAaa at the moment, had to get an electric tuner as I tried to do the online thing and couldn't get the tuning right, I had a pitch pipe for my violin. I found a website of all Dulcimer players that is really great and have been introduced to a group of folk musicians that play on a Wed night close by and am planning on going over to have a listen and when I get better a join in! I do not have any music for the Dulcimer yet, am working on getting the strumming right so it doesn't sound so twangy! I hope your appt goes really well, it makes the world of difference to talk to someone who knows the disease I found out.

     

    Jeannie they are testing for that as they think that may be the cause for my pain, hoping it is that simple as that will help loads! And I will join in on the web cam once I can actually play a tune hehe

     

    Thanks for all the support everyone and I am preparing for my Sclero withdrawal for the weekend! Have a great weekend and 'type' at you all on Monday!

     

    :thank-you-2:

     

    Jean


  18. Thanks for all the kind words everyone, and helping me put things in perspective. I am considering going to talk to someone, I'm leary of psychiatirists as I have been before and their answer always seemed to be more medication, but psychologist I think would help me. And you are right I do think I expected to go, in tell them what was wrong and they would give me a magic pill that would take away all my pains and I was having a bit of a paddy when they didn't. :temper-tantrum: I had even started preparing for the steriods hehe.

     

    I am feeling much better today and am determined to get myself in better shape, if I am honest I think a lot of the pain is from lack of use. Now that I am no longer working I go from the bed to the couch to the computer chair, with a brief stop at the kitchen in between! I also think I have been using this diagnosis as an excuse to feel sorry for myself and revelling in everyone else feeling sorry for me to, oh poor me :crying: I do this on occasion but it has lasted longer because I felt I had a good excuse. I know I have limitations and cannot do all that I used to but it is time to smack myself upside the head (metophorically of course, although the way I hit it probably wouldn't hurt anyways :lol: ) and get my rear end in gear and start doing things. I have the trip to Paris and I have my new Dulcimer, and other things to do, and all I need is to look around and see that I ain't got it so bad.

     

    Thank you again for all the kind comments, you guys are the best! :you-rock:

     

    Cheers

    Jean


  19. Hi Everyone,

     

    Well I had my first appointment with the Scleroderma Specialist and it went good and bad I guess. We went over everything and I am right on track with some of the common symptoms and they have given me a synthetic saliva to help with the dry mouth which is going to be great! Got started on a new medication for my Raynaud's called Amlodipine, hopefully it won't have the same bad affects of the last medication, I was so dizzy I couldn't walk a foot without falling over! I am being referred to a podiatrist to help with my feet, which I am thrilled about!

     

    That was the good news so to speak, bad news is my lungs are worse and I am now going to have to sleep sitting at an angle, no more lying flat, they are sending out an Occupational Therapist to do something about my bed. I guess I better make sure it is clean up here then, I keep the living room and kitchen as clean as possible, but upstairs things are shoved in every possible space! Its clean but not company clean (hehe).

     

    The thing I am most upset about is they are not going to do anything for the pains I am having, my back they keep saying is mechanical which okay, that is fine, but can't they do something for the pain? And my abdominal pain and the pain in my torso have them baffled, although it is connective tissue points they don't think it is related to the Scleroderma, and I had 2 Sclero specialist Consultants, the Sclero Doctor and the head of the whole department trying to figure it out, they think it may be caused by some type of bacterial problem that is associated with Scleroderma and I am being sent for a breath test to see if I have this. If it isn't that I'm not sure what they are going to do. In the meantime I guess I just deal with the pain and hope for the best, but it is a bit upsetting as that is what is keeping me from doing things is the pain. :glare:

     

    Trying to do more exercises and to stay up beat, it is hard and the depressions is getting on top of me more than I would like. But we are planning a trip to Paris in May, and I am going to get in as best shape as I can for the trip! Well thanks for listening!

     

    Jean

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