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Everything posted by miocean

  1. I made that mistake. I donated to a different scleroderma organization for years, not realizing that that it wasn't the one I used daily. Although it also does a lot for scleroderma, it has much higher expenses and budget and I'd rather give to ISN. miocean
  2. Back to this subject, again. We are revising our legal papers and are drawing up new will, creating new power of attorney's and updating our living wills. My husband didn't have one so his is being drawn up. Things you might want to know to handle your affairs: Last will and testament: this divides your estate as you see fit. We tried to make it so changes will not have to be made for a long time, making each other the beneficiary. Not having any children, we have made plans should something happen to both of us at once, and have planned for things if something happens to one of those people included in our will before our deaths. On these papers you appoint an executrix to handle your estate, we also appointed a substitute executor in case something happened to both of us. We did not include the division of personal property in these papers on the advice of our lawyer. He said to make a list of items and who should get them and attach it. You have to trust you executor to do as you wish, which we do. This keeps the value of your estate down for tax purposes and also makes it unnecessary to make a new will if you change your mind or want to add something. A codicil can always be added at a later time instead of re-writing the entire thing. General Power Of Attorney::this give legal power to someone else if you are unable to do things for yourself. It gives them the right to write checks, sell property, have access to your accounts, file your taxes, use your credit cards,make gifts, have access to your health records, make medical arrangements, hire and fire doctors (love that one!) take care of your funeral and organ donations (not that they'd want any of mine!) Again, we made each other POA with an alternate. This has to be someone you trust because they control everything should you become incapable of making decisions. They can institutionalize you and sell everything you own. Basically, they are in control of you and all your assets. Living Will: this determines what will be done should you have an incurable injury, disease, or illness regarded as terminal. It includes organ donation and life saving procedures.. It appoints a health care representative and, again, an alternate should be selected. This is costing us around $300 (we are in the U.S., NJ) so you want to make sure it is not going to change frequently and that all parties involved are in agreement. Our alternate is "honored" that he has been chosen. We are trying to make it as easy on him as we can by being organized. It also depends on the amount of your assets in the detail you go into in these papers. You should have several copies of each made up and carry your living will with you at all times, as well as placing copies in your doctor's files.The executor should know where copies can be found of all your papers. As I mentioned, we are doing a separate attachment for our possessions, not putting them directly in the will. My husband has a vintage surfboard and his nephew is a surfer and would probably love to have it. I asked what he wanted to do with it. He said " auction it off to the highest bidder and give half to ISN and half to Dream Factory of the Jersey Shore. " He knows how much both these organizations have helped me and how much they mean to me. It never occurred to me to do anything like that. He's a great guy! I will make it known that I want to donations at the time of my death to go to these two organizations It might not occur to you to think of a gift to ISN when making up your will or to ask for donations to be made in your name at the time of your death. It didn't occur to me until now. Not really happy thoughts, but realistic, especially for us as we have an incurable disease. And you really don't want to leave a mess for your loved ones or not have things handled the way you want them to be. Personally, having done everything to the extreme, I want to go out the same way! I want people to celebrate my life and "I'll See You On The Other Side." Forever, miocean
  3. Aw, shucks :wub: Thanks everyone. Shelley, I am happy to hear Gene is now infection free, I know he went through a rough time. I have been VERY fortunate, not even a cold, and my doctor tests frequently for BK virus and CMV as well. My donor and I are both positive CMV so the chances of my getting it are "intermediate." I carry masks with me and if I think I need to, put one on. Lung transplants are much harder on the body than kidney, from what I've read. miocean
  4. Well, illness can certainly tell you who your true friends are! I have been fortunate, my friends from the job I had to retire from have stayed with me and we get together every once in a while for dinner and occasionally a Girl's Weekend Away. They are younger than I am, work full-time and have kids so their time is very limited. They always include me and worked things around dialysis. They were my primary friends before scleroderma hit as my life basically revolved around work. However, I haven't really discussed scleroderma with them, as I mentioned before, I think I was pretty much in denial, everything was good as far as I was concerned. After my transplant, when I was in isolation, I sent out emails to please email me as it was my only contact with the outside world and didn't get a word from them. :glare: When I realized I needed a kidney transplant and was scared out of my wits, I went back to a Grief and Bereavement Counselor I had seen when my mother was dying to help me through the process. She was who I vented to, as well as the social worker in dialysis. Oddly, there were two friends who helped me tremendously through my transplant process and I wasn't even close with either of them. One was a woman I worked with who retired a year after I did. The other is a school friend who, although we were not close friends, were in class together from Kindergarten- 12th grade, quite an event! Both of them had the time to write daily, long emails and helped me through the many issues I was dealing with, loneliness, urinating all the time, etc. :girly1-by-lisa-volz: We have become very close although are communication is not as frequent now, but they were there when I needed them. My high school friends started getting together for "minifests" about 4 years ago and we meet a couple of times a year, plus my girlfriends from high school get together for dinner every once in a while. It is our 40th reunion :barf: this year and I am active planning that. At this age, everyone has health issues. We share, but no one wants to bore each other with the details. We'd sound like little old people :excl: :excl: A couple of years ago I joined a social networking group which led to my involvement in a dream granting organization for sick children. Again, I didn't go into detail with the disease. They knew I had scleroderma and had kidney failure. They have turned out to be really good friends. Not only are we active as an organization, but over the holidays had social events so I was a party girl! I have become more involved with the women in the condos I live in. Before, I was so involved with work, I just wanted to come home and be with my husband. Then I was so sick I had no interest in friendships with them. Now we get together on occasion for lunch and they really are a nice group of people. My husband is extremely supportive and listens and has been with me every step of the way. He sometimes doesn't realize my limitations to the fullest but has cooked, cleaned, shopped and gone to doctors with me. He has been my best friend, nurse and caregiver. This forum is where I would come to vent, question and learn. As I travel on this life journey I learn more and more that we all have issues in our lives, aging parents, illness, dying spouses, financial problems, job issues and on and on. Your friends are a precious gift, so don't shut her out just because she isn't open to hearing about your illness, just don't talk about it with her. If you need someone to talk with, find a friend who IS receptive, come to this forum, or seek professional help. miocean
  5. Hello everyone! Well, we all know it is a special date today, 1-11-11. :happy-day: But for me it marks the 10th month anniversary of my kidney as well! :happy-day: I can't believe how this remarkable gift has returned me to "almost" my old self. I feel like I am a participant in life again, and a contributor :excl: So many things besides the quality of my life have improved. My skin had started to soften and continues to, down to 8 from 45, my pulmonary function has improved, my echo showed no signs of Pulmonary Hypertension, and I definitely have more energy not having a dialysis machine, while giving me life, suck the life out of me three times a week. The calcinosis on my buttocks, while still there, is not as painful and the one area that was rough to the touch and really hurt, is gone. All is not perfect, the transplant did not make the scleroderma magically go away. :( My GI system is worse and I am dealing with issues of diarrhea, probably medically induced and nothing I can do about it. I have more medicine to treat it. My lung fibrosis has increased. My hands are less swollen but seen to be curving more and I am back at Occupational Therapy. The joint at the base of my left thumb is extremely painful and I wear a splint most of the time. Surgery "may" be in my future but between the transplant and scleroderma it might not even be an option. It's not painful enough at this point to even consider it. I have times when I just crash. I do too much and then pay the price. All I can describe it as is my legs "just go." Then I am out of action for a while. Don't get me wrong, I'll take it :excl: Anything is better than the "life" I had before the transplant. I realize now how very sick I was. People are telling me how worried they were about me. (I thought I was doing pretty good :P ) I still need to learn to pace myself. I tend to "use up all my spoons." Well, after resting yesterday, I need to get a move on. Too much to do and not enough time. I try to pace myself so I don't end up with a day of not being able to do anything, like yesterday. Hope you are all doing well, thanks for all the support :excl: miocean
  6. Sacha, I don't know anything about your daughter's vein issue, but I do have experience with ignoring an issue or not feeling like I should bother the doctor with it. If you are concerned, call the doctor, or if your medical insurance company has a nurse call line, call them. Better safe than sorry. miocean
  7. Smac, Here is a copy of a post of mine: Posted 22 May 2010 - 06:34 PM I had problems with my mouth in November.I couldn't eat anything except soft things and soup. I went to my general practitioner thinking it was a sore throat. He gave me some medicine, I don't remember what. It didn't get better so I went back. He did cultures that came back negative. I went to my dentist but she said everything looked fine. They both suggested I see an ENT. My dentist recommended one so I called and it took me days to get through. An appointment was scheduled a week before I was going to FL. I thought about it, decided I didn't like how long it took me to get hold of his office and cancelled the appointment. It eventually got better on its own. I lost 20 lbs. from November to January because I had trouble eating. I was actually reprimanded by my Nurse Practitioner, Nutritionist, and Scleroderma Specialist. I was awaiting a kidney transplant and they were concerned I wasn't eating properly. There are other posts on mouth sores but I did a search for them and didn't come up with anything. I still have a problem with hard foods like crusty bread. If it doesn't clear up, take the suggestion of seeing an ENT if you can. miocean
  8. J, I'm interested in what kind of therapist told you about ISN and how he/she found out about the site... Everything happened to me so fast, I had no time to be scared. I am so glad you jumped right into the forum, I lurked for a long time. (You lurkers out there, take note.) This is THE BEST PLACE for support and information. None of us are medical experts, but we deal with the disease on a daily basis and, in many cases, have more insight into it than some of the professionals. I am in NJ also and, unfortunately, the disease seems to be more common in this area. My mother-in-law had it and so did my best friend's mother. When I tell people I have it, quite often the response is "my _____________________has that, too." :excl: If you want someone nearby to talk with or anything else you can Private Message me. You do that by clicking on the envelope under my screen name on the left. I will give you my favorite quote from Amanda on this forum, "there is life after scleroderma." Ask your questions, post your concerns and everyone will try to help you. And in return, you will be helping all of us. miocean :bye:
  9. May your year be pain and hospital free...may your scleroderma plateau...may you be able to do the things that you love...may you have joy in your heart. :happy-day: Thank you to all my wonderful friends at ISN for helping me through 2010! :wub: I love you all! :wub: miocean
  10. :happy-day: Welcome Back, Shelley! I have masks with bling on them and get a lot of comments. As my mother-in-law would have said, "anything for attention!" :happy-day: miocean
  11. To all at ISN: Happy New Year and may it be one where we all stay out of the hospital! miocean
  12. Sacha, I am so sorry to hear of a young child suffering from scleroderma. I spoke with my scleroderma specialist about pediatric scleroderma patients because I am involved in a dream granting organization for sick children and would love to help a child with the disease, but she told me it is extremely rare in children and doesn't know of any. Dealing with the disease and all the medications is hard enough for an adult to manage, yet alone a child. This forum will be a great help to you for your questions and concerns as you travel this path with her. miocean
  13. Protecting your children from your illness is not the way to go in my mind. (Robyn) I agree whole heartedly with Robyn. I was 18 years old and away at college when my father was diagnosed with lung cancer in September. My mother would tell me he was getting better so I would write my friends that and being from a small town, everyone knew he was dying and was wondering where I was coming from. My aunt (his sister) told me he had a rare bone disease that was turning all the bones in his body to jelly because she was afraid that cancer would scare me! When I got the call to fly home I made it just in time to say hello and that was it. I never had the chance to talk with him or tell him I love him. I regret that to this day and constantly tell people I love them. When I had my scleroderma crises and my kidneys failed my sister was very vague about it with my niece because "she is so emotional." She was 19 at the time and to this day resents the fact that she wasn't told how serious everything was. I think Enjoytheride did the right thing by telling her sister. It was her sister's choice not to deal with it but at least she was given the option. My sister had a hysterectomy and a stent put in her heart and waited a long time to tell me about either of them. I had the right to know. I don't get this secrecy about illness, it's like something that has to be hidden and everyone has to pretend that everything is alright. I can see handling it delicately with young child but adults have the right to know and choose how they deal with it. miocean
  14. Happy holidays to everyone as well! This year I am really celebrating. :happy1-by-lisa-volz: I feel good enough to go all out decorating and have even been baking for the first time in 6 years! I've been to several parties already, this is a quiet week and then the week between the holidays is filled again with friends and celebrations. I have no traditions left. :( Years ago my mother would hold holiday Eve and holiday Day we would spend running around to see all the other family. My husband only had holiday Day off and it was exhausting, so when we moved and hour away from everyone, we made holiday Day "our" day. We would have a special breakfast, open gifts, walk up to the beach and do a bottle of champagne on the jetty (some winters we froze and others we sat and watched surfers) and have a special dinner. Since my mother passed and my side of the family moved away that tradition ended, my husband's family had their big family holiday two weeks ago and either lives out of state or goes out of state for the holidays, and with scleroderma and dialysis I could no longer walk up to the beach or drink the champagne. We would drive up instead, but it wasn't the same. Last year I was actually pretty lonely. :( We've had dinner parties New Year's Eve but it's so dangerous to drive around here, even if you haven't been drinking the cops stop you, that people are reluctant to come out. We will still be celebrating alone on the major days but have five events in between. So, I guess it's time to start new traditions! :happy-day: miocean
  15. Purr, :VeryHappy: That is such good news! :happy-day: Take it easy and don't do too much too soon. :VeryHappy: miocean
  16. Wow, Buttons, Sounds like extensive surgery. I hope they don't have to go in again. It sounds like a long recovery but I am hopeful that you will be better than new! miocean
  17. We had our first snowfall of the season Thursday afternoon, just a light dusting but it was very cold and it froze on the roads making everything very slippery and slowing traffic to a crawl. More snow is expected tomorrow, but they don't know how much. My feeling is, if it's going to be cold, it might as well be white and pretty. I've been reading about how cold it is in the UK, so all of you there, stay nice and warm inside! miocean
  18. I first noticed the hardening in my face trying to get my gas permeable contact lenses out. To remove them, you pull your eye to the side and blink. I couldn't get them out! My eyes were so tight my lid wouldn't pull.That was the end of contacts for me and I hate glasses. After 6 years I have become used to them, but still find them to be a pain, fogging up, getting wet in the rain, changing from regular to sunglasses etc. I have classic scleroderma mouth. One of these days I'll have to photograph it and post. I look like someone who was a heavy smoker! miocean
  19. Which of course has absolutely nothing in the whole world to do with anything. Anybody remember mimeograph machines (blue ink)? The teacher would pass out the papers printed on them and we would all hold them up to our noses and inhale! No wonder there are so many diseases today! miocean
  20. Well, it's going to 5 degrees overnight and into the morning here, :barf: and I have to get up early and go for blood work so I'll be wearing my silk underwear. Only 166 days until Memorial day! :VeryHappy: miocean
  21. Shelley, That is too funny. :VeryHappy: I am a picker and peeler as well. And I love gas fumes, when I was little I would take the cap off and stick my nose up to the car. I also like the smell of a freshly paved street... But this is about calcinosis. The ones on my fingers look like red bumps with dark centers. Two I've had for years and I have two relatively new ones on my little fingers. They hurt sometimes if I bump them hard, but have never leaked fluid. One comes and goes, right now it's back. The Calcinosis on my buttocks is another story. (Reading that post brought back memories) Since the transplant, surgery became out of the question and fortunately, the most painful area, which felt like a round ball and rough on the surface, has lessened. Now it just feels like I am sitting on rocks. I had purchased a folding gel cushion (stadium cushion) and carried in my large pocketbook but lost it. Now, how you lose an 8 1/2 by 11" thing is beyond me, but it disappeared. Since I'm better, I am not getting another one. :) miocean
  22. Back in the 70's I was the studio assistant for the ceramic department at my university. I mixed up the glazes in large quantities in a small closet with no ventilation, took raw silica and weighed it out on a scale and dumped it into a huge bucket, creating dust all over the place. Back then, no one knew to even wear a mask. However, my professor, who had much more exposure to silica over the years than I ever had, has not developed scleroderma. His wife was also a professor of ceramics and she died a couple of years ago from cancer. (?) I know several potters who were exposed much more than a normal person and never got sick. You can also develop a lung disease called silicosis from working with clay in it's powder state. I used to bring my dog with me at night to the studio and he would lay on the dusty floor with his nose right up against it. He developed trouble breathing and I took him to the vet who X-rayed his lungs and saw something out of the ordinary but didn't know what it was. There are old posts on what caused your scleroderma. One is How many of you have been in contact with this? and another, Scleroderma Causes. We've all been exposed to so many chemicals. A couple of years before I started teaching art, the teachers were having the kids carve something called "wonder clay." Ends up it was asbestos! No one really knows, as I've quoted before "if you lawn turns brown, do you dig up the entire yard trying to find out why or do you just treat it?" (old counselor of mine) It's good that you're asking questions on behalf of your sister and others. miocean
  23. Snowbird, You win, and your name suits you. Are you a "snowbird" that stays around for the winter or one that flies south?" I saw a robin here yesterday! I just read that there are parts of the U.S. that have record breaking HEAT! Aren't we fortunate to have warm homes and roofs over our heads? miocean
  24. 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
  25. 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
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