Remember That One Time? When I Had Lupus?

Here’s the skinny – I have lupus. Here’s the story, and it goes a little something like this –

Lupus affects skin, joints, blood, and kidneys – for me specifically = pulmonary hypertension and pleurisy/chest pain 3 winters in a row in 2001-03 and now off and on, swollen lymph nodes, memory problems, confusion, headaches, high fevers, behavioral changes such as depression and bipolar, personality change and psychosis***, fatigue, painful joints, anemia, rash on forehead and beginning on cheeks, sun sensitivity, hair loss, abdominal pain, nausea, and vomiting, abnormal heart rhythms, blood in the urine and long-term elevated white-blood count since a child.

The Lupus begat

Fibromyalgia, a full party on its own including widespread musculoskeletal pain, more fatigue, sleep, memory and mood issues, more headaches and irritable bowel syndrome.

The Lupus also begat

PCOS -cysts in my ovaries causing pain, miscarriages, hormone disorders (more headaches, exhaustion again)

Hashimotos -hypo-thyroid, male-pattern baldness, weight gain, also exhaustion (I’M TIRED, OK?), more depression, mania, sensitivity to cold and heat, constipation, migraines, muscle weakness, cramps, memory loss.

And last but not least, The Lupus begat

Barely working liver and spleen, kidney issues, food sensitivities.

The DID is a separate issue, but by this time, your head is probably spinning and it might be hard to distinguish one thing from the other. Get out your punch card! You’ve all won a free hoagie!

And all because of a kitty that didn’t want to have a bath. Yes, my docs believe I have lupus because of an ornery, panicked kitty with bacteria on his claws that punctured me in the back and activated a lupus gene lying dormant inside me in 1997. And the leg bone’s connected to the brain bone. Who knew?

SO anyway, at this point I give you permission to use the phrase, in the most sarcastic voice possible, “Thanks A LOT, The LUPUS!”, every time something in your life goes wrong, because the kids and I are getting quite good at it. Example being, you all pile in the car to go out to dinner and someone forgets their wallet, well, Thanks a LOT, The Lupus! Or you knocked over your glass of milk. Or forgot someone’s birthday. Or stubbed your toe. Seriously. Try it. It’s good fun. The possibilities are endless.

Lupus is kind of scary. Here is a good website with lots of info. Lupus.org. I have Subacute Systemic Lupus, meaning it’s not full blown, if you can imagine. And actually, I can. It could be so much worse. Lupus in an auto-immune disease, so basically, your body eats itself up acting like your organs are foreign enemies that must be obliterated. Friendly fire, if you will.

In Acute Lupus, you’re losing parts or whole organs, taking steroids to slow the process and getting your affairs in order. You are your own worst enemy.

In Subacute, your body is just waiting for an excuse to be a real jerk, but it’s not quite there yet.

So, YAY for Subacute!

And here comes the boring part, mostly for my personal history record. I have a lot left to learn about lupus. I could be wrong about some stuff I think I know.

My plan of attack at the moment is building, not detoxing. My spleen and liver couldn’t handle it and my intestines aren’t working, so if I get more toxic, those toxins would just go round and round in my body killing me slowly with their song. I need to get stronger and help my immune system work if at all possible. I can’t stay in the sun very long. I can’t exercise vertically. So I have to get creative.

MY TEAM of docs and heathcare providers include

Rheumatologist
OBGYN
Homeopath
Acupuncturist
Yoga Instructor
Psychiatrist

My Rheumatologist and Homeopath have given me mostly the same diet suggestions, which follows closely to the Blood Type O diet found here. Heavy on the protein and dark green veggies, very, very low on the carbs and starches, light on the fruit and dairy. No sugar, caffeine.

What I currently take daily –

-Prescribed Meds
Synthroid 112 mcg/morning
Trazedone 100mg/night
Lamictal 100mg/night
Prilosec OTC 1/night
Acetaminophen as needed, up to 3000mg/day

Next week I will add-
Flexeril
Plaquenil
And one of these – Mobic, Naproxen, or Relafen.

-Current Supplements
The Blood Type Diet “O”, Live Cell
The Blood Type Diet “O”, Polyvite
Nordic Naturals, Balanced Omega Combination
Dr. Clark Store, Allied Amino Acids

Next week I will add-
PepZin GI
Digest Gold

Also next week I will have more tests with the OBGYN and get a sense of the damage done to my ovaries, kidneys etc. It’s the missing piece of knowledge. Once I have those results, I’ll pretty much know exactly where I am and how far I need to go to get stable.

***YES. THERE IS A LOT TO PROCESS HERE. I HAVEN’T EVEN BEGUN TO FIGURE OUT HOW I FEEL ABOUT THIS. That is why it’s down here at the bottom and not explored in this post.

9 Responses

  1. sending love, and good energy YOUR way, because frankly, you deserve it… you are an incredible, talented, creative, kind woman with a mind boggling amount of inner strength.
    xoxo

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