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Thread: Update!

  1. #11
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    I spent last summer in a wheelchair, while traveling, too. The orthopedic surgeon found that I had Avascular necrosis in my knee, which means that the bone is dying. He ordered NO weight bearing two days before we were to fly out of San Antonio. We had to arrange to rent wheelchairs wherever we went.
    We spent a long weekend at a college campus in New Hampshire for a teacher's conference, with Jeff pushing me around. Then, we spent a week in NYC with our daughter who lives in Greenwich Village. Both of them had a blast pushing me all over Manhattan. They even put me on a subway in that chair, and pushed me all over Central Park and the Metropolitan Art Museum.
    The next part of our summer, the AF sent Jeff to Honolulu for 6 days. While he and his team worked at Hickam AFB, we wives enjoyed Waikiki. One of the other wives would push me, and we shopped 'til she dropped. Jeff took a great picture of me sitting in the chair on a pier with Diamond Head in the back ground.
    The last stop was Yakota AFB, just outside of Tokyo. You would not believe how much fun we had in Tokyo, despite the chair! The people there are so polite and helpful, especially to a handicapped person. We figured out the trains, saw all the sights, ate at hole-in-the-wall sushi bars and even experienced a real Japanese karaoke bar.
    I had to use a rolling walker all last year at school, and I had arthroscopic surgery on that knee over the winter break. The knee is still extremely painful, so I suspect that there is still some AVN in it. It tends to affect other joints, too, so it could be the reason that my other knee and hips hurt so badly.
    I'm an active person, and I love to travel and have fun, so even when my health slows me down, Jeff and I usually figure out a way for me to do what I want to do. I just may do it a little slower than I would like!
    Hugs,
    Marla

  2. #12
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    Wow you have been all over the world! How exciting!! Sorry about the avn! I'm glad you have such a positive outlook. I used to be an active person, but I just can't seem to do anything anymore. If it's not pain and swelling, it's the FATIGUE that gets me down. It just seems like it's on thing after another after another. I want to have more good days then BAD ones. I hope that is coming soon!!! I wish I could be active again!
    Dx. SLE June 2009


    ♪ Jen ♪

  3. #13
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    Smokerscat,
    Do you take MTX and/or Plaquenil? My fatigue has improved a great deal since I've been on the right combination of MTX, Plaquenil and mega-doses of vitamin D.
    I now have lots of energy, but the knees and hips won't cooperate!
    I hope that your rheumy and PA can find the right combination for you.
    Hugs,
    Marla

  4. #14
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    I was on mtx but my hubby and I want to have a baby, so they took me off mtx 2 1/2 yrs ago. I really don't want to give up on having a baby, so I really don't want to back on mtx. I am on plaquinil right now. I started a little over 2 months ago. I take a multi vitamin evry day and vitamin d and caltrate. I guess I am just playing the waiting game! waiting for my meds to kick in. It's just so frustrating! Last night I tried to sleep and my feet felt like they were on FIRE again. So I got up and put ice bags on them. They were red, HOT and very swollen. After about 2 hrs of icing them, they finally cooled off and the swelling went down. I didn't get to sleep until after 7am! THIS SUCKS! Once I got to sleep I slept like a rock! I just need to be able to sleep at NIGHT like that!
    Dx. SLE June 2009


    ♪ Jen ♪

  5. #15
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    You and I have the opposite problems with our feet at night. My feet are ice cold for an hour or two after I get to bed. The rest of my body is warm and cozy, but my feet are like icebergs.
    Marla

  6. #16
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    What I wouldn't give to go back to having cold feet! Sorry yours are so cold! I would welcome the cold right now compared to my inferno feet.
    Dx. SLE June 2009


    ♪ Jen ♪

  7. #17
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    Lightbulb new update!

    Well day before Thanksgiving my rheumys office called me. Blood work came back! My vitamin d levels are so low only 3, I guess normal is around 30 so 3 is really really low. My calcium is also extremely low. So they faxed a prescription to my pharmacy for 50,000 IU of vitamin d. take 1 every week for 3 mo. and I am to take 1,500 IU of Calcium a day. So I guess that explains the EXTREME FATIGUE I have been dealing with.... YAY!!!!! Hopefully I will start feeling a difference soon and start feeling better!!!! I also developed a rash on my nose and cheeks it kind of looks like a rug burn, but I know it's not! obviously!!! I had a wonderful Thanksgiving with my husband at my folks place. It was nice to visit them!!! The Dr. also put me on Ambien CR for my sleep issues, and Nexium for the acid reflux. I have to schedule the echocardiogram on Monday... I will let everyone know all the results. Take care all!
    Dx. SLE June 2009


    ♪ Jen ♪

  8. #18
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    I'm taking the same dosage of vitamin D once a week. I had dropped from 46 to 29 on my vitamin D level, so the rheumy caught it before it could get worse. She also told me to go beach walking and spend a little time in the sun each day if possible.
    It has seemed to help me with the fatigue, along with the MTX and plaquenil.
    Be sure to read the info on your vitamin D prescription. It says to not take it at the same time as the calcium - something about interfering with absorption. On the day that I take the D, I take my calcium later in the day.
    Hugs,
    Marla

  9. #19
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    Thanks for the advice! I sure hope it works soon... How long have you been taking it? How long did it take to notice a difference? Hope you are doing better!

    Hugs!
    Dx. SLE June 2009


    ♪ Jen ♪

  10. #20
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    I've been on it for five weeks now. I noticed that I felt a bit more energetic within a week of starting it.
    My DH found some info that said that taking plaquenil may be related to low levels of vitamin D. The timing would be right for me. I was at 46 last spring, when I started the plaquenil, and it dropped to 29 by the end of August.
    Feel better soon!
    Marla

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