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Thread: lupus newbie in Maine

  1. #1
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    Default lupus newbie in Maine

    Hi-

    This is just a post to introduce myself and also to thank you all for having this group. I was reading some of the messages last night and so much sounds so familiar. I was diagnosed about a month ago, but I went the hard way- though renal failure and the hospital. Hindsight being 20/20 and all- I'd been having signs for at least 2 years. I had the joint pain/swelling, purple skin when it gets cold, fatigue, a weird eye thing, and laryngitis- but since they were all periodic, I would conveniently forget about them when nothing was happening. Eventually my friends/family made me go to the doctor, and I was diagnosed with allergies and given allergy medicine. That worked a little, but didn't fix everything. I just assumed my allergies were severe.

    Then, my body really wanted to wake me up. I got a cold which seemed pretty bad. I was having problems breathing and everything. I couldn't even climb stairs or sleep. (I'm usually a pretty active person and would do 2 hour walks with the dogs in the morning). I was getting over my cold, and I got bitten by a black fly next to my left eye. My whole left side of my face swelled up like a balloon- it was really hideous. After the black fly bite, my breathing problems came back but were worse, and my vision started getting really blurry- in both eyes. I went to the doctor again, and she still thought it was allergies, but thought I had allergy induced asthma and gave me an inhaler. The inhaler helped me to breathe, but I still couldn't see (VERY FRUSTRATING). I was beginning to get scared, so I went to my eye doctor. He basically said he had never seen anything like it- my blood vessels in my eye and around my optic nerve were all swollen. He referred me to a retinal specialist who I saw in a few days and he was even impressed (when multiple techs want to sit in on your exam, you know you have problems). He ordered every blood and lab test he could think of. When I saw him again (a few days later)- he told me he suspected I had lupus (the very elevated ANA) and had already made an appointment for a rheumatologist for two days later. Meanwhile, I was miserable- I couldn't breathe, couldn't see, had no desire to do anything- perhaps the worst day of my life was the day between the two appointments. I saw her the next morning and she was going to start me on the steroids, but she did the normal blood pressure and lab work before she started. That's when they all realized I was in renal failure. I learned later that my blood pressure was 198/132 and my creatine was 2.3 (to later go to 3.9 in the hospital). She sent me to the hospital. My first time in the hospital. I spent 5 days there- got lots of steroids, got a kidney biopsy (I have type 4), and got my blood pressure back into human values with the help of good drugs.

    While I wish I would've figured out the whole lupus thing before I killed my kidneys (hopefully only 20% permenant damage), I do feel somewhat relieved to have a real diagnosis- not just some weird syndrome that only I have. I'm also very glad that my eye doctor was so proactive in getting things done- hindsight again- I didn't have that much more time (and I had no idea).

    It is a little frustrating because I want to get back into normal life too quickly, then my body just tells me 'no'. I'm adjusting how much I work and letting go of some of my extra activities. The other thing is the food- the staples of my diet before were french fries, pizza and chocolate- all on my don't eat list (my potassium levels are high).

    I have many questions about all this- so I'll start with a few:
    - when you are in remission do you have close to 'normal' energy levels though the day if you get good sleep at night?

    - will I be able to eat french fries and pizza ever again???

    - does anyone have a good resource for high potassium and low potassium foods- there are the obvious ones that the dietician at the hospital told me about (potato, tomato, bananna) but the list she gave me didn't cover everything. I'm especially confused about meats- are any meats (chicken, fish, red meat) low potassium? Different things I've looked at have contridicted each other. Dairy as well. I'm trying to be good!!

    That's probably enough for now. Thanks for listening and sorry for being so talkative.

    Monica

  2. #2
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    Default

    You can eat things like french fries and pizza but it's all about moderation!
    Right NOW you might not beable to because of your potassium levels, BUT once they have stabilized I am sure you will probably be able to re-introduce them... They just can't be your staples anymore... But, be sure to ask your doctor whether once your levels have stabilized you can eat them again or if they will send you way out of whack...

    As far as remission... From what I can tell, just as Lupus is different for everyone, so is remission... And every doctor's definition of remission... Sorry I'm not much more help!!

    Welcome to the board!!
    "All sounds are potentially dangerous.
    All sounds are potentially medicinal.
    All sounds are beautiful." ~Yoko Ono

  3. #3
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    Default also from Maine

    Hello Seal Harbor...I am in Bangor...sorry to hear that things got so bad. I have also been on the misdiagonsed roller coaster for years. And because I suffered from depression 20 years ago...basically all my weird symptoms that kept me going back to the drs were written off as "being in my head" I was persistent thank goodness and finally was sent to a derm who figured it out. I only got refered to the derm when I called my doc a moron though....I told him...who the heck gets hives for two years? It isnt all in my head you moron. ops:

  4. #4
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    Welcome Monica! This disease is a roller coaster ride for all of us. As solesinger said in due time when your potassium levels lower you should be able to introduce those foods back into your diet in moderation. Everyone's disease is so different and you can't really say how things will turn out. My remisson I had for 9 years made me feel like I didn't have lupus. But since my flares on and off from last summer I'm back and forth with energy levels. While I am 10 times better than last summer I did cut my work hours back to part time. I find that I'm tired when I get home and ready for bed by 900 pm . I work the weekends so Monday's are my lazy days for me because I just don't have the energy to go crazy. I do the bare necessities.
    I'm glad that you have joined our group and I hope we all can help you through this ride with lupus. Welcome ! :lol:
    Diagnosed in 1990 at age 11.
    Trust in the Lord with all of your heart!

  5. #5
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    I am so sorry you have had such a hard time of it, seems like aLOT hit you REALLY fast!

    For what it may be worth, you sound REALLY WELL TOGETHER.
    I'm new here too, so far; everyone seems pretty supportive.

    take care
    An eye for an eye only makes for a very blind world.

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