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Everything posted by miocean

  1. miocean

    Cold Cold Cold (in Montana)

    It's actually mild here today (50 degrees) but rainy and dark. There is a post on coping with winter on the Fun and Friendship Forum Baby It's Cold Outside The other day I went into a friend's house and she asked "why are your hands so blue?" I was wearing my splint for my thumb and couldn't get my gloves over it and explained that it's part of the wonderful package that comes along with scleroderma. Our friends in Vermont have a wood stove and it's my favorite spot in the house. Their house is over 100 years old and is warmer than our 20 year old townhouse. We are putting in new windows so that should help. As I said, the silk underwear works very well and is worth the investment. We've been hearing about the storm in the mid-west and hope hope all of you there are keeping warm and staying inside. miocean
  2. miocean

    Humor at top of Posting page

    Purr and Buttons, Hospitals are definitely not the best of places to stay and we have all had our share of time spent there. I found that a headset helped a lot at night buffering the hospital noises. I had a roommate once with Alzhiemers who had her days and nights mixed up so she would sleep all day and talk to herself out loud all night. :emoticon-insomnia: There's not much you can do for the lights and constant interruptions, except a sleeping aid. Best wishes to you both. miocean
  3. miocean

    Setting a record: way too many hospital visits

    :happy-day: There's no place like home, there's no place like home... :happy-day: miocean
  4. miocean

    Holidays Overwhelming

    Over the past six years my holiday decorations dwindled little by little until last year, when I hardly did anything. I managed to help my husband decorate the tree, put a couple of things around the house and he did a wreath on the door and a few outdoor lights. We live in a condo so we don't do that much anyway. I had him marked several boxes of tree ornaments "Do Not Use" because it was just too much for me. This year is a different story! I feel so good since my transplant I am really excited about it! I've done things little by little, and of course, DH has been a major help. I've bought a lot of new decorations and want more but am holding off. I realized I was missing a lot of things and, of course, they were in the boxes marked do not use, all antique ornaments from my mother and her friend that are now displayed in a bowl on the table. I'm like a little kid driving around and seeing all the lights! The family is scattered for the holidays, Saturday is his big family celebration on at his sister's but all the shopping is done, and I just have to wrap We spend holiday Eve and holiday Day alone, which is a little sad, but nice, too. We are hosting a couple of small events between the holidays. Again, he is the cook so I never deal with that. although I am "considering" making some cookies! I will say, I am paying the price of all the running up and down stairs and running around. Last night I tried to wrap a few gifts and could barely do it. We went out to dinner and my legs started to go. I was able to make it through but came home and did nothing. I slept as late as I could today but had appointments, have a short break now, and an evening meeting, but am not doing anything else. It can wait. I can't say this to others, but you will all understand. I feel like I am preparing for my future death. I find myself marking things as I get out the holiday stuff so others will know what they are when they go through my things, and not think they are junk. We are changing our wills to a new executor and I am planning on photographing my jewelry and putting it in a document so, again, it is not considered junk. Am I crazy or just being realistic? miocean
  5. miocean

    Losing myself :)

    That's really great!. It's especially hard over the holidays but keep up the good work! miocean
  6. miocean

    Breast Cancer and Scleroderma

    Vanessa, I share with the others about sorrow regarding your breast cancer. You must be very frightened. Many years ago I had a questionable area and I know how I felt, and thankfully it was a benign cyst. I can share this with you: a friend of mine, at the age of 30, was diagnosed with breast cancer. She was tested to see if she carried the gene for it, she did, so she opted for a double mastectomy, with reconstructive surgery. Sadly, her boyfriend at the time, couldn't deal with it and they broke up. She got back together with an old flame and they married. She wanted a baby really badly but was concerned that with all the treatment she had, she wouldn't be able to conceive. They are now the parents of a healthy 10 month old! As for healing from surgery, I healed very well after my kidney transplant and the incision is quite long. I, too, have diffuse scleroderma. Please keep us posted on your progress and I wish you the best! miocean
  7. miocean

    Annual CT Scan

    Again, like any test, there are so many variables. This was done at a different center than my past 5 years, they couldn't open the scan on the disk from from last year so just went by the report. This report had much more info on it than the others and was done at a center familiar with scleroderma where my local one just compares reports from year to year. Thanks for the feedback. miocean
  8. miocean

    Annual CT Scan

    Hello all, After all the good test results since my kidney transplant I was disappointed to learn that my annual CT scan shows an increase in fibrosis in my lungs."There has been an overall increase in the interstitial nodular changes since the previous examination particularly in the left upper (never had fibrosis there before) left lower and right lower lobes." :angry: My scleroderma specialist's comments reads as follows: "I am inclined NOT to treat yet since you are on anti-transplant medications and your pulmonary function tests look better. Let's continue with repeating the pulmonary function tests yearly for now." She tends to treat symptoms aggressively with medication so I am taking this as a good sign. I will be delivering this report to both my nephrologist and pulmonologist for their opinions. The only treatment I have had for interstitial lung disease was in 2005 when I was scheduled for three months of IV infusions of cyclophosphamide, once monthly. After the second month I become so sick I was hospitalized for 4 days and treatment was stopped. I have been on and off oxygen over the years. I get slightly out of breath if I have been climbing up and down the stairs of my condo, which I've been doing lately to decorate for the holidays. There are 5 levels so it's a lot of stairs, I just stop and catch my breath and I am fine. I am thinking about going to another specialist for a consultation. I am close enough to several major centers including John Hopkins. I am not seeking a second opinion as far as diagnosis as I definitely have diffuse scleroderma, I am just wondering about treatment options. Of course, with the kidney transplant, medications become an issue and quite often my nephrologist says no new ones. Could I please have your opinions on this? miocean
  9. miocean

    Baby, It's cold Outside!

    The silk underwear worked great :excl: They are nice and light but very warm. Too bad they are so expensive. I too, have wool lined leather gloves that I bought in a shop where the weather is even colder than here. I had a pair for years that were so worn they had holes in the fingers but I still wore them because they were warm. Gloves are deceiving, some look like they'd be warm but they are not. I also bought a cool looking hat that comes down over the ears and has braids hanging from it at a store even further north. I figure those places are used to cold weather and would have things more suitable to it than my local department stores, where fashion, rather than warmth, is often what's emphasized. Stay warm and if you are in the southern hemisphere get some sun for me! miocean
  10. miocean

    Baby, It's cold Outside!

    My silk underwear came today! :VeryHappy: :happy-day: :VeryHappy: I will be trying them out tomorrow for a busy day walking outside and will let you know if they work! miocean
  11. miocean

    Lower body pain

    I don't know why it fluctuates. I was feeling great for a while, and then last night, after two very busy days, I was at a transplant support group meeting when my legs started to ache so badly I had to leave. I went right to bed when I got home. I felt better today, once again had a long one, and my legs ache again. :wacko: I have a busy day tomorrow and it just keeps on going with the holidays coming up. I'm trying not to overdo it, but it's difficult for me to say no. miocean
  12. miocean

    Newly Diagnosed - newly scared

    Hi Erika, I'm sorry you are scared. That is very common with this uncommon disease. Try not to read too much of the bad stuff that can happen, while at the same time keeping yourself informed. Use this site for information and support. Enjoy the good in life, and experience whatever you can with joy in your heart. miocean
  13. miocean

    (Update) Amanda: Diffuse Systemic Sclerosis

    :emoticon-bang-head: I am such an idiot! I jUST realized that the Amanda in the link was "our" Amanda and when I first read this post I couldn't believe the moderators would allow someone to post "what a whiner!!!" :emoticon-bang-head: miocean
  14. My donation is in honor of the many volunteers who devote so much of their time and much needed energy to ISN. Special thanks go to Shelley and Gene Enze for their corporate office! When you begin to understand what goes on to maintain this very wonderful forum and all the pages of resources it is absolutely amazing! miocean
  15. miocean

    Nowhere to turn.

    :happy-day: Yippee! :happy-day: miocean
  16. miocean

    Lower body pain

    Hi Kamlesh, It is good to see you post again, although I am sorry it is because you are experiencing pain that is preventing you from your favorite activities. To me, it sounds like you are doing a lot, working, traveling, hiking, and that is in addition to the everyday life things you do. Now that I am more active again, I am having trouble with my thighs and calves, too. They cramp and ache. No diagnosis has been made, most things have been ruled out, so I just deal with it. It "might be" Restless Leg Syndrome, but there are no tests and only daily medication, which is not for me. Did you have your circulation tested? If it is okay, then you might just have to face the fact that on top of scleroderma, you are getting older :temper-tantrum: and have to slow it down a bit. I know from your previous posts that you maintain a healthy lifestyle and I'm sure that includes stretching (which I am very bad at doing.) I hope you continue to post on the forum. You were very helpful to me in the past. miocean
  17. miocean

    Nowhere to turn.

    NorthStarHope, So sorry your sister is, once again, back in the hospital and facing surgery. I just wanted to let you know that the incision from my kidney transplant was quite large, from the hip to the groin. I bled for weeks, not because of scleroderma, but because they should have put a couple more staples in the lower part of the incision. I eventually healed beautifully and have barely a scar! Stay strong and let us know how she is doing. miocean
  18. miocean

    Am I alone?

    Shelley, Think of it, if you only had one week left to live, would you want to live it all down in the dumps? Or would you rather spend it lavishing love and happiness and appreciation on all your family and friends? That was a wonderful response and something we should all keep in mind. Many of my friends and family have commented on how well I deal with everything and it has been my philosophy not to make everyone around me miserable. And, as I mentioned in another post, I really think I was in denial, a recent discovery. I did seek psychological help and went on medication for depression, primarily because I was sitting around staring into space. It was a great help when I needed it. miocean
  19. In general everyone needs to be aware of all sorts of fumes, whether they have an illness or not. My chiropractor, who is as healthy as can be, eats well, follows a holistic protocol, has Bell's Palsy from spending hours in a paint store with fumes. We are going through home renovation and I will be getting out of here for some of it. I am just not going through exposure to construction dust and fumes. miocean
  20. miocean

    Am I alone?

    Patty, I first heard of scleroderma years ago when my mother-in-law was diagnosed with it. I searched it on the internet and said to my husband, "this does not sound good." She lived at least 10 years after diagnosis and died a week short of her 90th birthday. Six years ago when I was suffering symptoms of scleroderma but undiagnosed I researched it like crazy and was scared to death. A doctor I went to for a diagnosis told me to get off the internet. When I did get a diagnosis and my kidneys failed. I read that renal failure was the leading cause of death for scleroderma with a life expectancy of five years. Well, six years later I am the happy recipient of a kidney! There have been advances in dialysis and treatment for kidney failure so now the leading cause of death for scleroderma is lung fibrosis with a life expectancy of two-three years. Again, I have had it for six years and I am still alive and kicking! This forum is the best source of information. Here you will find up to date news, medical information, and real life experience of scleroderma survivors. Yes, it is a terrible disease, but it is not a death sentence. Some interesting things that happened today that relate to this: I was talking to my nail tech about positive attitudes and how they affect you, especially when you are sick. Two people she knows were diagnosed with the same type of cancer at the same time. One researched it, changed her diet, and most importantly, maintained a positive attitude. She is still alive today. The second did nothing to change her lifestyle, was negative and passed away a couple of years ago. So a positive attitude is essential. :happy1-by-lisa-volz: I started using a transplant forum as well for the same experiences and results. A survey is being done by someone in Japan about whether support forums for transplants have helped you. I took the survey. One of the things that came up repeatedly was questions regarding whether the forum made you nervous or upset. That surprised me because they have always comforted me. If a forum is making you upset, DON'T USE IT!!! I tried another scleroderma forum in addition to this one but found it unprofessional and pushed a specific protocol. I haven't looked at it in years. Stay positive, be proactive, don't over research and take one day at a time. Continue to read and post your concerns on this forum. Everyone is so helpful and encouraging. Best wishes :excl: miocean
  21. miocean

    I'm happy today because....

    ]I'm happy today because I found my ring![/color] :VeryHappy: And you won't believe where...I had searched my pocketbook thinking it might have fallen off in there to no avail. Today I was getting my pen out of the side pocket and there was something around it, MY Ring! so strange a place but at least it showed up. miocean
  22. miocean

    I'm happy today because....

    Joelf, :happy-day: :happy-day: :happy-day: Enjoy each birthday and may you have many more! miocean
  23. miocean

    Pain...venting need help

    Me, too, Sweet. I used to do the hot bath to warm up and really miss it but between my inability to get up and down from the tub and the calcinosis on the buttocks I can't do baths anymore. I have a little heater in the bathroom and sometimes I'll put in on high, get the room super warm and jump in the shower, but then I don't' want to get out of it, and my hair will be wet so means blow drying it and that seems like too much effort just to get warm. I have gloves in many different weights and make sure I have them with me. I have blankets all over the place and have so many that I think I am going to put one in the car because my husband like things cooler than I. When I'm in the car by myself in cold weather I crank it up high and roast . Feels great. miocean
  24. miocean

    Splints, again!

    enjoytheride, The idea about a pin is great the only thing is the top part is where the velcro straps go, don't' know if they'll adept a pin. I'll try. miocean
  25. miocean

    Splints, again!

    I am wearing a splint once again and this time am being "compliant". It actually feels good! This one is a soft neoprene one for the thumb on my left hand. The joint where it connects to the thumb is swollen, pops, and hurts. This cushions it and makes it feel better. It is bright blue and only about 5 inches long. My OT also made one for my index finger, it is plastic and ugly, but I don't' have to wear it all the time. I've been having trouble with my index fingers, they are the most contracted, and lately they have been going into cramps and contracting more. When they do this, I can slip on the splint and it will force my finger to straighten. It happened last night while I was writing with a pen and it helped. I have a drawer full of splints he made me over they years from up to the elbow, the wrist and just the finger but I can't wear them. I am volunteering at a black tie event for charity tonight and won't wear it. It's not black! ;) miocean