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Medical Forum / Diseases and Disorders / Arthritis / April 2005hi everyone
Hope all is well. I was wondering if any of you are familiar with a letter/email that someone wrote to family and friends that basically says in a nice way, butt out of my illness choices, Ive heard anything you are probably about to say, etc. Things like that are stated in the letter and it just so describes how it feels when yer friends are like, oh hey, try this massage technique, no try this diet, etc. Anyone have any idea what im babbling about? marnie :) > Hope all is well. I was wondering if any of you are familiar with a > letter/email that someone wrote to family and friends that basically [quoted text clipped - 7 lines] > > :) Hey Girlie-- There used to be something like that on the AI website. Maybe KJ or Kimmie has a copy of it. -Ashley ========= ~~AC. char very kindly pointed me inthe right direction *hugs* to you ash girl! and thank you. marn > Hope all is well. I was wondering if any of you are familiar with a > letter/email that someone wrote to family and friends that basically [quoted text clipped - 7 lines] > > :) Hey, Marnie...I see you got your answer, but wanted to say 'hi' and remind you we're looking forward to gimpfest! Kelly C. Marnie wrote: > Hope all is well. I was wondering if any of you are familiar with a > letter/email that someone wrote to family and friends that basically [quoted text clipped - 3 lines] > oh hey, try this massage technique, no try this diet, etc. Anyone have > any idea what im babbling about? Google "Miss Manners," the syndicated columnist. She has an answer for just about every breach of conduct you could think of - and then some more. <g> ... Doctors wear gloves so they won't leave fingerprints. Marnie, My Fibro Support group, The founder of it....Well she had a letter to normals and family and friends..But her website is down and I don't have a copy of it...But I will be looking to find it today...Also at this web site....It is all about invisible disabilities...and there is a booklet that you can get...I haven't ordered it yet, but alot of my friends at Clouds have and given it to there loved ones and family..It is called "But you look Good" This is a great site for those of us living with invisible disabilities and there are many of them... http://www.myida.org/ Hope this helps...Hugs Cindy > Hope all is well. I was wondering if any of you are familiar with a > letter/email that someone wrote to family and friends that basically [quoted text clipped - 7 lines] > > :) > Hope all is well. I was wondering if any of you are familiar with a > letter/email that someone wrote to family and friends that basically [quoted text clipped - 7 lines] > > :) KJ wrote it, and I hope it's the one you were looking for: Dear Loved One, I am sending this letter to help you understand my feelings as I deal with arthritis and the changes it brings to my life. I am scared. I don't know what the future holds for me. Will I end up crippled and in a wheelchair? Or will I be one of the lucky ones who have very little joint damage. If you find me being quiet and reflective, please don't think I am upset with you. I am trying to sort out my fears. I am angry. Arthritis has taken so much away from me. I can no longer do many of things I enjoy doing. I sometimes have difficulty just completing simple tasks. If I appear angry please understand it is the disease I am angry with, not you. Please don't assume you know what is best for me. Arthritis has affected my joints, not my mind. I am capable of making my own decisions. If I make the wrong decision, it is I who has to deal with the consequences. I still want to be part of the "gang." Please continue to invite me to participate in activities. I'll decide if I am capable of it. You may think you are being considerate by not inviting me to go ice-skating with everyone else, but it hurts when you exclude me. Maybe I can't skate with everyone else but I can bring the hot chocolate and watch. Don't tell me how Aunt Martha cured her arthritis by drinking vinegar or any other supposed remedy. I have done much research and I keep up on current treatment options. I speak with my doctor regularly, if there is a possible cure out there, I will know about it. Please don't tell me you know how I feel. You don't. Don't offer me sympathy; I don't want your pity. But do offer me support and understanding, which I appreciate. I know sometimes I look perfectly healthy, but looks can be deceiving. Please understand that I am dealing with invisible pain and a lot of fatigue. Even on a good day I feel like you do when you have the flu, tired, achy and sore. Please keep that in mind. I want you to know that arthritis moves around. Just because I climbed the stairs yesterday doesn't mean I can do it today. Yesterday my shoulder was throbbing; today it is my knee, who knows what it will be tomorrow. Finally, please remember that I am the same person I was before arthritis; arthritis doesn't change the heart and soul. I still laugh, I still cry. I still love and I still hate. I am me, I am not my disease. Please continue to love me just as you did before. I need lots of love, understanding, support and hugs, just like you. With love, Me author: KJ Glad to hear from you again. Have missed you alot. How are things going.  SignatureLove and hugs to all Good thoughts coming your way too. Squirrely Jo > Hope all is well. I was wondering if any of you are familiar with a > letter/email that someone wrote to family and friends that basically [quoted text clipped - 7 lines] > > :) hi marnie! glad to see you back! aside from unsolicited advice, i hope things in general are going well for you. kate > Hope all is well. I was wondering if any of you are familiar with a > letter/email that someone wrote to family and friends that basically [quoted text clipped - 7 lines] > > :) thanks you guys! for the help and of course wonderful posts. I am doing ok now. was having a horrible time until i saw my doc yesterday. My pain was out of control and he put me on a new pain med , a pain patch that lasts 72 hours and so far, the first 15 hours, I feel fantastic and my pain level has gone from an 11 to a 2. It seems as though the AS may have started going after my ribs. The past two months, the pain has moved up to the higher middle back area where the ribs connect to the spine. Breathing, coughing, laughing, sneezing, and sitting up straight have been causing me horrible bouts of pain and muscle spasms. At first the doc thought it might be an infection of some sort, but after the emergency appointment yesterday, I guess he realized that it wasn't an infection and that something else is obviously going on. He will probably put me through some more tests, bone scan, mri, etc. Right now we can't afford it so that will be put on the back burner. I have a job working as a receptionist and I love it. Unfortunately it's not giving me enough hours and I have had to apply to a new job. Our nest egg, which we have been living off of for awhile is pretty much depleted and because of my disability its a lot easier for me to find a job.in the horrible Oregon economy. As long as its just me sitting and using my fingers and brain then thats the job for me. This new one requires me to type 45 wpm, and I tested at 87!!! It's to be a 911 dispatch operator and I am hoping and praying that I get it. It's been a week since I applied but I'm not sure how long it will take for them to get back to me. I know the next test will take place around may 10th so if i don't hear from them by then, I'll have to go back to searching for another job. My wonderful husband has been keeping up the household chores and keeping me well fed and as happy as I can be. We are still very much newlyweds even though we've been married for a year and a half now!!! All in all, even with the financial troubles, Life is good. My doctor is an incredible man, as well as the people who work in his office and that just makes life much easier knowing I have them on my side. I can't think of much else to type, so I'll just end my update now. I am always lurking ;-) and dont even TRY to take away my chocolate. I hope all is well with all of you and I look forward to the gimpfest! Lots of love and soft hugs marnie |
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