Jump to content
Sclero Forums

uknlv18

Members
  • Content count

    152
  • Joined

  • Last visited

Posts posted by uknlv18


  1. Sorry to hear you about your aches and pains and especially your hair, nothing worse than a bad hair day that goes on and on!

     

    :happy-dance: heres a bit slower dance so you can keep up!

     

    :spoon: and here is one of my spoons, Im afraid I can only spare one at the moment cause I seem to keep running out of them! Hope things get better soon, and if not a spa day then maybe a nice long hot soak in the tub!

     

    Jean


  2. Hi Lesley

     

    Hail and well met!! Decided to be different with the welcome hehe.

     

    I have a patch on my wrist that involves the skin thickening, and some days it is hardly noticeable, other than touch. It feels like elephant skin... not normal skin... well probably not that hard, but close! Once a month it 'flares' up and becomes red and shiny and in my case swells up! When it started it was just a tiny patch of skin that I noticed felt different.

     

    As everyone has said already, a Scleroderma Specialist makes all the difference. I went for 5 years with varying symptoms, attributed to all sorts of things from my weight to my age. But I am now being treated by a Sclero doctor and all these symptoms are well known to them and they do not treat me like a hypochondriac anymore!

     

    Good luck with getting to the right specialist and welcome again. You will find this a nice and friendly place to be!

     

    Cheers

    Jean


  3. I get the forgetfulls all the time, I can't remember what I did in the morning by the time the afternoon has rolled around. I bought one of those daily pill dispensers so I can tell if I took my pills for the day or not! I have found some really good free programs on the net that you can put on your computer to replace all the notes and stickies! If you want a few suggestions just PM me or search them! They work great as you can set alarms, change colours to suit your needs and they dont blow away when it is windy!

     

    Cheers

    Jean


  4. Hehe, isnt that the truth Shelley, and I always say that I have the body of a 46 year old but the bones of an 80 year old woman! hehe My mom told me it isnt that you get more things wrong when you get older you just notice them more, not sure if that is true but I sure do notice them!

     

    :emoticons-group-hug:

     

    :spoon::spoon:

     

    Heres a group hug and a couple of nice spoons to help you out Karen, hope things get better soon!

     

    Cheers

    Jean


  5. Hi Lori

     

    I have been having a great deal of pain in my hands lately, especially my left hand, which appears to be the worst of the two for tightening. And when my hands have bad pain, for me it feels like I have pulled a muscle in my hand although I know I haven't, I also get pain in my wrist, elbow and upper arm on the left for some reason. My pains tend to come on in the evening making it difficult to sleep. The heat helps a lot as you have tried but also the ibuprofen gel helps and the creams that provide heat to the area when applied or the ones that apply cold to the area. I have to try both as it seems one time heat works the other the cold helps. They may help when you are not able to have a heating pad. I hope this helps and you find some relief from the pain.

     

    Here's a hug and a couple of my spoons to help out!

     

    :emoticon-hug:

     

    :spoon::spoon:

     

    Cheers

    Jean


  6. I'm glad to hear that the blood came out fine, I have trouble with them being able to find veins, I always have. I look like a pin cushion when I am done, and when they dig around trying to find a vein that is the worst! I was told by a nurse that they call that going fishing, so I told her to act like she lost her bait and take the line out and try again without the fishing part hehe. :emoticon-dont-know:

     

    Here's hoping that things start staying in your system and the symptoms alleviate for you! And many hugs and a few of my spoons to help you along!

     

    :emoticons-group-hug:

     

    :spoon::spoon:

     

    Cheers

    Jean


  7. Hi Queenie,

     

    I got diagnosed with Diverticulitis about 10 years ago now, and I have consant problems with either diarrhea or constipation, and the cramps are horrible. I do not take anything specifically for it, but as has been said certain foods trigger it. So maybe keep an eye on what you eat from now on and notice if it causes troubles. One thing that works for me and keeps me pretty normal most of the time is to drink plenty of water, it seems to help me a lot.

     

    Hope you feel better soon

     

    Cheers

    Jean


  8. Hi notletinggo

     

    Well I have been dieting for a bit now and have cut down on a lot of my meats, but I love my chicken and bacon too much I think to give them up completely. For me personally if I eat a lot of raw veg, I get terrible cramping and gas and then suffer from horrible bouts of diarrhea but this doesn't mean you will do the same. But it is not just meat you give up to go Vegan, you have to give up anything that was produced by animals. Also you will need to look at a lot of the products you use to make sure there are no animal by products in them. The only advice I would give is what I would tell anyone, you have to do what you feel is right for you and not what others think is best, so if you feel you will be better off going Vegan/Raw and it is something you want, then do it. If it is not something you want then don't do it. At the end of the day if it isn't something you really want you will be miserable and not succeed at it very well.

     

    Best of luck in your decision!

     

    Cheers

    Jean


  9. The white vinegar works a treat, but you do have to rinse twice as it can leave a bit of a lingering odour, so if you don't mind smelling a bit like pickles then one rinse is fine hehe. Also if you go swimming in chlorinated water a lot, if you soak your suit in water with a couple tablespoons of white vinegar, your suit will last longer. I found this out when I was going swimming every day and my suits kept getting very thin in places, that the chlorine deteriorates the material, and my aunt told me about the vinegar cure and my suits lasted a long time! :emoticons-line-dance:

     

    Cheers

    Jean


  10. Hi Lynne

     

    I get itching all the time as well, it is on my forearms mostly, but I do get it on my tummy and abdomen. I double rinse everything to make sure I get all the soap out of the clothes which has helped. And my arms it is from touching wood like the wood on my computer desk, so I cover it with a cloth and that helps. Some medications (especially the ones for pain) can also make you itch.

     

    Hope things get better for you soon!

     

    Cheers

    Jean


  11. Hi Everyone,

     

    Still having a bit of a bad time with things lately, not coping well I guess is the best way to put it. And Amanda you were right it has come to bite me in the rear, have spent most of this week being really sick and sleeping all the time :sick2:

     

    I have started doing some excersise this week, it is a DVD that is designed for people with disabilities and is quite good. Was doing good until yesterday when a bout of dizziness caused me to fall down the stairs. Sigh big goose egg on my left knee and ankle and a lot more pain. :blink: Nothing broken and no major damage so that is a good thing!

     

    I keep seeing everyone giving me and other people spoons so finally decided to see what that was all about, and the story was so wonderful and it made me cry. But I am going to show it to my family and friends here as they know I have something wrong but no idea what it is and what it is like. I know they get upset when I can not go and do things like everyone else, and I think they think I am just being awkward.

     

    On the up side I have lost 5 more pounds in the last two weeks, and the weekend is soon here so I will have my hubby for company for two whole days :woohoo: I have been trying to be British and the stiff upper lip, but it is trembling a lot lately, but I am finally working my way back out, perhaps the fall down the stairs knocked some sense into me and has snapped me out of my funk! So now it is time to wave my magic wand :fairy: and get back on track, and I think the spoon story will help a lot with me feeling so guilty about not being able to do what I used to be able to do!

     

    Hope everyone has a relatively pain free week!

     

    Cheers

    Jean


  12. Hi everyone,

     

    I was diagnosed about 8 months ago with a Vitamin D deficiency, no mention of any B's at the time. This was before they knew about the Limited Systemic Sclerosis and all that. When my general practitioner found out about my condition he was going to stop prescribing the Vitamin D supplement, as Vitamin D usually has calcium in it as well to help your body absorb it. But I discussed it with my Rheumatology nurse and she said they prescribe it all the time, so perhaps it is a common side affect of the disease?

     

    Glad to here you are doing better though.

     

    Cheers

    Jean


  13. Enjoytheride put it very well,

     

    I have had experience with the doctors telling me how lucky I was not to have something worse, and at the time you just want to smack em upside the head and say "what are you talking about!" But it is people trying to say something that they think will make you feel better, and although they may say the most ridiculous things they do mean well. And even family will be at a loss as what to say. I knew a girl years ago that had terrible pain in her face all the time, and I used to think "just take a pill and get over it, what's the big deal". Now I know what the big deal is but there is no going back and changing what we did. For me when I am feeling frustrated and angry about the raw deal I feel I was given, no amount of sympathy or kind words really helps me. The only thing I can suggest is as has been said before in other posts, this is all a process and you will need to work through it in your own way and in your own time. But remember that your friends and family are probably as frustrated as you are and not sure what to do or say and they are afraid they will make you angry or upset if they say the wrong thing.

     

    Many hugs to you and keep posting, just having some place to vent if I need to where the people really do understand what I am going through has helped me alot, and I have only been here a short time!

     

    :emoticon-hug:

     

    Jean


  14. Hi,

     

    Well I am not sure if it is related or not as I am newly diagnosed with Sjogren's but I get severe ear pain quite often and I am always positive it is an ear infection but when I go to my general practitioner there is no infection. So I have been trying various home cures for it and can suggest things that worked for me.

     

    I rub Ibuprofen gel around the outside of my ear, down the neck and in front, basically where your glands are by the ear. And then lie on a heating pad or hot water bottle, this has so far helped to get rid of the pain for me. Pretty much anything warm on the ear is helpful, and also try to keep any air going into the ear as well.

     

    I hope and she gets to feeling better very soon.

     

    :emoticon-hug:

     

    Jean


  15. Thanks you everyone, I am feeling better, my pity parties don't last long and a big :emoticons-group-hug: to you all for your kind posts. I put some John Denver on (I know Im a nerd hehe) and had a good cry :emoticon-crying-kleenex: and now I am doing all right. I have decided to make some apple pie tomorrow, and take a nap in the afternoon!

     

    Have ordered some covers for my crochet needles so hopefully doing something different will give me the boost I need.

     

    Cheers

    Jean


  16. Hi everyone,

     

    Feeling more than a bit depressed at the moment so thought I would post on here and see if it cheers me up. As always reading all the great comments on the forums gives me a smile, but it has been a bad week and I am trying to be positive but it is just to hard at the moment.

     

    I was really excited about starting my cake decorating class next month, but my hands have gotten so bad that I can no longer make a fist, the skin is so tight that I can just curl my fingers and barely touch the palm of my hand, and the cramps when I try to do anything detailed is terrible. I drop everything and it is getting so annoying :temper-tantrum: I decided I shouldn't waste the cost of the class as I doubt I will be able to do much and if it is in any way fiddly then forget it. I been trying to make myself get things done during the day this week, I figured it was just being lazy having to lie down in the afternoon every day. Have got a lot done, made 4 batches of Honeycomb, successfully made caramel/toffee, and baked two loaves of french bread and a loaf of rye bread. But boy I can hardly stand up today, soooo tired and am annoyed at myself for being so tired. I really havn't done that much. I just spent the last few hours just sitting in a stupor!

     

    Sigh sorry for the vent, just wanted to tell someone what a horrible week it has been, now I think I am going to go to bed for a week!

     

    Hugs and I hope everyone has a lovely weekend!

     

    Jean


  17. Hi San,

     

    That sounds like an awful start to the day, and I can tell you from bitter experience if you watch too much of the daytime TV, if you weren't depressed when you started you will be after! :emoticon-hug:

     

    I hope your day turns better, and the week can only go up from here right?

     

    Jean


  18. Hi Jeannie, that would be sooo great if she would part with her recipes! Tell her I will give proper credit hehe I have been scouring the net to find some recipes and have found a fair few, thought I could take bits from each that sound good and try those. But would love to know how you keep the garlic crisp and not cook it :emoticon-dont-know:

     

    I am growing my own cucumbers this year so should have some nice fresh little ones for pickling!

     

    Cheers

    Jean


  19. I am attempting to make my own caramel tomorrow, I love the stuff so thought I should just make my own. Been doing that a lot lately, made a batch of pickled garlic, hot pickled carrots, and some Honeycomb. The pickled items are ok, but are missing something just have to figure out what. I added dill to the garlic but I can't taste it, and it said to boil the garlic in the jar after sealing and I think that was a mistake cause now the garlic is cooked and too soft, I wanted crisp garlic! So will try again and tweek things, the carrots turned out nice, they are supposed to be like the pickled carrots you get in Mexican resturaunts in the States, but they are a tad spicey hehe. The honeycomb or Hokey Pokey turned out lovely, but I can't make it too often cause I just sit and eat it all :rolleyes:

     

    Jean

×