Thursday, August 9, 2012

Lupus & Sjogren's: 7 Quick Takes

1. "Lupus (also known as SLE, systemic lupus erythematosus) is an autoimmune disease. It takes on several forms and can affect any part of the body, but is most commonly attacks the skin, joints, heart, lungs, blood, kidneys and brain. Autoimmune diseases are characterized by a malfunction of the immune system –- one in which the immune system cannot distinguish between the body's own cells and tissues and foreign matter, like viruses. Rather than simply producing antibodies to attack antigens (viruses, bacteria and similar foreign matter), the immune system creates auto-antibodies that attack the immune system itself." from about lupus
Scary, but as my doctor said, "With these test results, your symptoms (skin, joints, etc) should be much worse. You haven't gotten sicker in ten years, so your lifelong prognosis is very good." This is reassuring; my husband has had patients in their twenties die of the disease (usually it would be brain and kidney involvement). And lupus might not have completely caused me to miscarry a 20-week baby seven years ago, but it didn't help. So, I hate lupus even if my manifestation of it isn't 'that bad' for the time being. 
image from Scripps website
2. Lupus patients should protect themselves from the sun so much that they need Vitamin D supplementation. This is not an easy feat for me, living in sunny-all-the-time-land and having a big head that no woman's hat will fit on me. One size does not fit all! 
3. Please, please don't tell me anything bad about sardines! They are low on the food chain, so they should be very low in mercury. They hopefully aren't overfished, and they actually taste really delicious. I've been eating them every day for lunch. The checker gave me a weird look when I bought 12 cans. 
4. 14.5% of lupus patients have a wheat sensitivity while 1% of the general population has one. Am I going to have to get on the gluten-free bandwagon? I was never one for trends. 
5. I am going a bit crazy trying to find a good eating plan.There are so many conflicting ideas on this! 'Normal' doctors say stay away from meat and coconut oil because of the saturated fat. Others say that grassfed (spendy!) beef is perfect as well as coconut. And don't get me started with implementing a high-protein, soy-free, saturated-fat free, lots of raw vegetables diet will work with small children in the house. I am basically down to sardines and fresh vegetables (but no nightshade- potatoes, peppers and tomatoes)
6. Sjogren's is the exciting new syndrome I have- also an autoimmune problem. It manifests itself with a general dryness and can be quite serious, but for now it is just my eyes that feel like they are filled with sand. I use artificial tears on sleeping and awakening. So far, so good. 
7. I've been doing a lot of 'smiling and waving' at my doctors- some of whom I do not really respect. Who orders a 24-hour creatine urine test without also ordering a protein test on said urine?! And I find that I make medical assistants and doctors nervous. One said, "You've read a lot about this, haven't you?" He was shocked when I knew which drugs he might prescribe. I was interested in being a doctor as a girl, but I just didn't feel like going past Algebra 2 and Chemistry. I'd rather reread a good book and have a cuppa.
I'm sorry for the semi-depressing quick takes. If you have anything to add about autoimmune disorders, I welcome your advice in the comments- but before you ask, I am not taking steroids...thankfully, I am able to focus on natural means to help my symptoms.
find more quick takes at conversion diary

21 comments:

  1. it figures, there had to be someone who can't find a hat to fit because their head was bigger, I can't find a hat to fit, because mine is too small.

    I hope that what you are doing will continue to bring relief of your symptoms, whatever you have been doing seems to have helped.

    is it possible to look for a new doc?

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    1. I'm going to be able to change my primary in November...in the mean time...

      There are a few places online to buy big hats...I gotta get on that!

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  2. bad news: lupus is one of the risk factors for preeclampsia... but you probably know that now.

    i'm probably preaching to the choir but can you get a nutritionist consult? and seriously... what is up with doctors not asking for protein tests on the urine in addition to creatine?

    it's in your best interest to know all about what meds they might prescribe. you are your own best advocate. half of medical professionals don't believe my autoimmune disease (fibromyalgia) exists. believe me... i know how stabby they can make you because i have to smile and resist the urge to kill frequently.

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    1. My HMO needs to REMINDED FREQUUENTLY to actually make the calls for referrals- referrals that I can get if they actually call! GRRRR- but yes, I am trying to get with a nutritionist. I have a natural medicine friend who is helping me- but I like to combine conventional with natural stuff...trying to cover all my bases

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    2. there's a bumper sticker that says "we already have death panels. they're called insurance companies." i want it. BADLY.

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    3. yes- they ARE deciding if I am 'worthy' of seeing a specialist- worthy of getting a drug (thank GOD I had better insurance with the last 2 kids....or they and/or I might not be around)

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  3. Maybe I shouldn't mention that I had an Aunt from marriage die of Lupus (oh, well, I said it). She died suddenly while on vaca, but she didn't take good care of herself and it sounds as though you do.

    One bit of advice, rest frequently.

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    1. No- that's okay- lupus can be REALLY bad- that is why I am grateful that it hasn't gotten worse. I am so lucky that I had four kids- that is one stresser that would be bad (not that I am completely 100% closed- if you know what I mean)

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  4. :( I'm sorry you have to deal with both of these diseases. I hope your symptoms are and will remain managable.
    My own autimmune experience is limited to allergies, and an auto-inflammatory disease that might or might not be the presentation if an autoimmune disorder... nothing as serious as Lupus, and much, much better since my stem cell transplant.

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    1. Thanks for your kind words...I just have to be a grown-up about this and stay away from bad-for-me food

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  5. I have a big head too; finding hats are a pain. I've had the same GAP ball cap for 12 years now because it's the only one that fits, but sometimes, you just want a nice, wide-brimmed straw hat! :)

    I'm sorry about the Lupus & the Sjogren's. I hope you're able to keep everything at bay. My mom and I both have positive ANAs; while I'm symptom-free (as far as I know), she has Raynaud's and arthritis. She does get a "mask" but the dermatologist told her it was rosacea...but I wonder if it's really Lupus. Her mother had MS...so all of the auto-immune stuff is pretty scary, especially when you throw in my PCOS and benign thyroid cyst, my mom's benign pituitary tumor, her sister's thyroid cancer...what went on in our gene pool???

    I saw your comment on my last post and replied, but in case you don't get back over there: something's coming! Something BIG!!! :)

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    1. I hope you are taking your vitamins, rabbit! You have a lot going on....have some sardines in my honor ;)

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  6. Well, I don't have any information on lupus, but I am a good shopper.

    Have you ever checked out the hats at REI ? I find that hats at Target and the like are always too small, but REI actually has hats that come in various sizes.

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    1. ...I am a cheap person- but 'normal' stores like target are out and I don't feel comfortable getting hats second-hand. I am getting some hats from 'Duluth trading Co" on-line

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  7. In case you're up for some unsolicited advice, check out the book Wheat Belly (cheaper on kindle) and a primal/paleo eating plan (archevore.com has the most scientifically sound and common-sensical one I've seen in my reading+research)... I personally don't have any auto-immune disorders, but have seen enormous anecdotal evidence citing the effectiveness of elimination of wheat and most sugar, along with what they term ''industrial seed oils'' (cottonseed/soy/canola..) for entirely 'curing' those suffering from them, be it Crohn's/IBS/Celiac/lupus, etc.. Maybe worth a shot?

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    1. M- It's not unsolicited- I asked for advice! Since this latest flare, I have cut out wheat, so I am going in that direction- I'll check that book out- thanks!

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    2. hey thanks for stopping by my blog and leaving a link to this. I also ahve diagnosis of both SLE and sjogren's (and raynauds and fibro). I have been on as many as 9 drugs plus chemo and transfusions but currently am just on a low dose blood pressure med.

      re: gluten-free, for some people it is a trend. for others, it is a medical necessity. I am one of those people who can get their lupus tests to go totally negative if I am gluten free *and* dairy free. There are so many good gluten free products out there now, it's not nearly as hard as it used to be. It's not like I need to eat cookies and noodles all day anyway, just like to have a piece of bread with dinner, or a roll for my veggie burger. If you're eating a lot of sardine and vegetables, those are gluten free. all fruits, all meats, all vegetables. me, my go-to food is hummus. I can't imagine how much hummus i've eaten by now.

      anyway, my suggestion to you on the gluten free is track your symptoms while you are gluten free. on day 8 of being gluten free, eat some gluten, just a normal amount, and see if you have any symptoms show back up in the following 72 hours. (food moves through us grownups slowly). This i Dr Mark Hyman's suggestion for food sensitivity testing- more accurate than blood tests is removing suspected allergens for 7 days, eating it on day 8, and tracking your symptoms.
      :)

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  8. Feed stores (and gardening shops) often have many sized hats for real people.
    Sardines are one of the best meals on a sandwich, with pasta ("Pasta con Sarde" - TJ's has wheat free pasta), or (my favorite) with rice and steamed vegetables or lacto-fermented vegetables.
    I second the advise of getting rid of sugars, grains, and processed oils. They can cause inflammation, which can trigger or worsen auto-immune disorders. I'd read about paleo/primal diet, GAPS diet (Gut and Psychology Syndrome),and Weston Price dietary recommendations (the most moderate- still pretty radical compared to a modern diet). Prayers for your health, Priest's Wife! I wish that I lived close to you to help you out.

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    1. Thanks for the ideas- off to the gardening center I go...I'm glad sardines are on the approved list- now I am trying to balance fasting guidelines with my diet. I realize that with medical issues the letter-of-the-law fasting guidelines can be changed, but I want to see how I can do some of both

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  9. Know that your health is prayed for at least once a day by this family.

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