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Thread: MagistraMarla finally checking in

  1. #1
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    Smile MagistraMarla finally checking in

    Hello to all my old friends,
    First Ė a shout out to Saysusie and Oluwa. Iíve missed you ladies, and now Iíll try to stay in touch a bit better.
    I haven't been on WHL for a long time since school has been insane and I've been very disgusted and confused with some doctor visits.
    I'm home from school this week because I had oral surgery yesterday morning. I had to get it done while I still have insurance from my teaching job, and since 4 days this week will be devoted to the stupid state TAKS tests, I took the four days off to rest and recuperate.
    Iíve been on a roller-coaster for two years now. Iíve been to several different specialists, and it seems that everyone has had a different theory about me. My PCP was the one who originally thought that I had ďLupus or something auto-immuneĒ. My original rheumatologist wouldnít treat me for any kind of auto-immune disorder because none of my blood tests were ďhigh enoughĒ. A neurologist suggested that I could have ataxia, since I have some neurological conditions, and weíve pursued that possibility, too.
    Last spring and summer, my right knee was horribly painful and I was diagnosed with Avascular Necrosis (AVN or osteonecrosis). The first orthopedic surgeon that I saw just told me to keep weight off of the knee and seemed to just want to wait until the bone collapsed. The second one that I saw suggested arthroscopic surgery.
    After I had the arthroscopic surgery on Dec. 19, I had a follow-up with the assistant to the OS two weeks later. He insisted that I should be "pain-free" by the 6 week check-up.
    Well, I had the check-up in Feb., and I was still complaining of stiffness in my knees (even the one not worked on), bone pain deep in my knee (not as bad as before, but still there), inability to sleep, and still falling down in front of my classes occasionally. BTW - the doc had repaired a torn meniscus and "shaved" the part of the bone that was necrotic. Guys - he YELLED at me. He told me that I couldn't continue to use this as a "crutch" and that I needed to get a gym membership, and to get up at 4 a.m. if necessary to exercise. He renewed my prescription for a NSAID, so I asked if I should take it daily or only as needed. He told me to "take it every day until I lose 20 lbs." For the record, I'm 51, 5ft. 3" and weigh 145 lbs - not too terribly overweight!
    On the same day, I saw my new rheumatologist. She gave me a thorough check-up and took 14 vials of blood. I recently had a follow-up with her. She told me that I had tested "mildly positive" for Lupus, Rheumatoid Arthritis, psoriasis, and Sjrogren's syndrome. (all auto-immune diseases) The other rheumatologist had refused to treat me for any of these things, since none of the numbers were "high enough". She thinks that when we consider the cumulative effect of all of them, it does need to be treated and called it a "mixed connective tissue disorder". She has already started me on Plaquenil, and now wants me to start on Methotrexate - to bring down the inflammation in my body. I told her about what the OS had said, and she called him a "fitness nut". She said that I had every right to be still in pain, with the inflammation that I still have, and to listen to my own body when it comes to exercise. She also noted that AVN is often seen with both Lupus arthritis and RA, and that I should continue to be monitored for it.
    WOW, what a relief to finally find a doc who listens and will "think out of the box". The Plaquenil is helping me to feel a bit more energetic. I'll try the MTX once I get off of the antibiotics for this big hole in my gum! I know that many of you are familiar with methotrexate and Iím really worried about taking it. Since it suppresses the immune system, Iím worried about taking it while Iím still in school. The kids are really good at sharing germs! I hope that I don't have to take it for very long - I'm moving very near to the California wine country in the fall and I don't want to be on meds which keep me from drinking good wine! My husband just got accepted into the Naval Post Graduate School and the Air Force is paying for us to move to Monterey, Cal. for him to pursue his PHD in computer security. I canít wait to be living on the beach. What an experience for a Midwestern Farm girl! Our youngest daughter just moved to Little Rock AFB with her new Airman husband, so we now have an empty nest.
    Thanks for reading my rant! Soon, I won't be teaching, so I'll have more time to do more than just lurk.
    Marla

  2. #2
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    Hi you, Marla....I've wonder where you have been and how life has been going for you. I sent out am APB, I might have PMed ya and wrote a blurb on your profile...lovely to read you Marla...

    With this new format, site...I find I am losing contact with many..and many posts get lost. I get lost. So many choices...PMs, blogs, personal page, social groups, threads...and then the games. I am addicted. I took a vacation from them..now I am on them again.

    How I found your post...I must have felt your vibes because I decided to do a search for you today and viola, there you are...hugs.

    Despite all the pains, surgery, doctors visit I see a bit of joy in there...beach...a doctor who doesn't just adhere to the black and white in print, but the ability to be reasonable, logical and grasp the whole picture..not too many left. I have yet to find one since I left Seattle..

    When ya moving? I want to head back west...soon. When the real estate takes an up swing...soon, I hope, soon...

    Lupus is being kind to me...enjoying the new found freedom, not pain free or symptom free but to me it is like freedom. Tolerable, manageable..

    Enjoying the spring with time spent in the garden...beds.. watching the saplings bud and the hostas double in size from last year. It has been a good Spring...

    Soon swim time...an activity I enjoy..west coast, beach soon you will be able to too. Monterey is gorgeous. At a time I lived in Fremont, East Bay and would take weekend drives there through the whinding coastal roads...walk the boardwalks and piers. Lots of wonderful places to drive to..Half Boon Bay, San Francisco. Nude beaching at San Gregorio Beach Park...

    My husband still travels....and I am still being domesticated. Learning to enjoy all things at home. Maybe this summer we will travel too...

    Lovely to read you..hugs...be well...
    Love,
    Oluwa
    I have Lupus. So *^#@! what.

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    Hi Marla,

    Glad you came back and just saying hello to you.xxxxxxxx
    I am still here,just been on new meds so unable to function like i used to.I will pop back,just know im thinking of you all and hoping you are keeping on keeping on.xxxxxxx

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    Your Dr. had no right to yell at you. You don't have to take that kind of behavior from him.
    If I were you, I would consider finding a new Dr. I don't understand why some of them have to be such asses? Take care!

  5. #5
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    Hi Oluwa,
    Yes, it's good to "hear" from you again, too. For a while, I guess that I was trying to believe what my former rheumy had said - that I didn't have lupus- and so I didn't feel that I was supposed to be here. Funny, but my body was still telling me that he was wrong - the rash on my face and neck, the weird sores that would come and go elsewhere, the chronic fatigue, and oh! the joint pain. It all pointed to something auto-immune, but I just couldn't get any doc to look at the whole picture until now.

    I think that now that the Plaquenil is kicking in, it is getting a lot more tolerable for me, too. I've been home resting from the oral surgery, and I really like the way that I'm feeling. I can't wait to get this last month of school over with. I've had most of my teeth crowned now, and this surgery to put in an implant is the very last one. My dentist will finish with that tooth in August, just when my school insurance ends.

    We'll be leaving for California around September 1. Jeff's classes start on Sept.21. It looks like we will get base housing at NPS, so we won't have any responsibilities or worries! I've visited there before, and I know what a lovely, restful place it is.
    We spent all of last summer traveling, with me in rented wheelchairs. We attended a teacher's conference in New Hampshire and then spent a week with our oldest daughter, who lives in Greenwich Village, NYC. After that, I accompanied Jeff on a 6 day TDY to Honolulu, and then we went from there to spend 6 days at Yokota AFB in Japan. I rested while he did his AF business, and then we would play - what fun memories! I will always love traveling, and Jeff very patiently hauls me along wherever he goes.

    We've had lots of changes in our family lately. Of course, Heather is in NYC. Tom took a great job in Houston and moved there. Kayla is teaching pre-school in Fort Worth, so the 3 yr.old grandson, Kyle is there. Meghan rolled her truck 4 times just before Christmas and had to recover from a fractured spine (while I was recovering from surgery, too - we kept Jeff very busy). Meg and her Airman boyfriend then surprised us and decided to get married on Valentine's Day! It was a lovely military wedding, with the Lieutenant Colonel giving the bride away to the Airman. They just left for Little Rock AFB with her 130 lb. German Shepherd and her 5 lb. Chihuahua. This just leaves one of our children here in San Antonio - Hillary. She has our 10 yr. old grandson, David. David and I will spend as much time together as we can this summer - I'll miss that little guy! He's on a swim team, so we'll be spending some swim time, too.

    I'm glad that you are having a good spring there (Is it North or South Carolina?). We visited Heather when she graduated from Duke, and it was really a lovely part of the country. Enjoy your garden, but do be careful in the sun and don't overdo it.

    Great to chat with you! Unfortunately, I have to go back to school on Friday. My life will get crazy again until June 4. The school has luckily found a new Latin teacher. He's from Michigan, and is flying in for a visit next week. My students will be very relieved that the Latin program will go on.
    Until later,
    Marla

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    Hi Marla,

    What a pleasant surprise to see you back. You have been missed but from your post have been through a lot (and I know that is an understatement). Congrats to your husband and his new position. I am glad you have something positive to look forward to after all you have gone through.

    June 4th will be here in not time and school will be over. Take care of yourself in the interim.

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    hi marla,

    i am so glad you found us again. I have some experience with methotrexate, i started taking it about a month ago, after my plaquenil was not giving me relief after 5 months. I too was very frightened of it, but now i am getting several good days from it....i am still scared of the lowered immune system, but right now it is worth the risk.../don't know what the future will bring, but i actually find myself looking forward to monday nights even though i know that tuesday will royally suck. Several of us go through this, but being together and sharing chocolate really helps.

    you say your plaquenil is helping, have you been on it for 5 or 6 months? if not, you might want to wait until school is out before starting mtx, and give the plaquenil more time....just a thought/.

    welcome back., i look forward to learning with you.
    Phyllis

    share a smile today

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    Oh my, Marla..ouch...replacing fillings with caps. Were you like me growing up..no florinated water or do you have Sjogren's too? I have that too. Drying up like a chip, inside outwardly.

    130 pound German Sheppard and a 5lb Chihuahua..I roared as I envisioned them walking down the road together...or does the little one get a ride? Too cute.

    I am in South Carolina..Charleston area and it was another beautiful day today. I'm enjoying them before the hot humid days come...

    The Plaquenil will keep kicking in...even more and you will have a great summer, and an enjoyable trip to Monterey....

    How was your day back at school today?

    Hugs and loves,
    Oluwa
    I have Lupus. So *^#@! what.

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    Nice to meet you. Welcome back.
    But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint. Isaiah 40:31

    Take Care,
    Becky

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    Hi, Marla! I, too, am a virtual stranger to WHL these days. So, imagine my surprise when I logged in and saw your post! It's wonderful to know that you've finally found a doctor who will listen. You've had a long, long road to diagnosis. Sometimes, that's the hardest part. I was on methotrexate for a short while early on, but eventually ended up on cellcept. I was lucky, though...no side effects from methotrexate. I know others who opt for the shots because then it doesn't have to pass through your gastrointestinal system (which is sometimes a problem for folks.) I hope it does the trick for you, Marla, and that California is everything you hope for! Good to read your post!
    "If you trust Google more than you trust your doctor than maybe it's time to switch doctors."

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