State of my health, or What #InvisibleIllness is like

dSavannah note & update 5/23/18: Typically, I do not edit or change blog posts once I’ve published them, except in rare exceptions to change a factual error or fix a typo.

However, because I am still referring people to this post if they are interested in learning more about my illnesses, I felt I should add this note.

Everything below is still true, almost three years later (this was originally published Oct 25, 2015). The only difference is I’ve added a bunch more symptoms (over 50!) and diagnosis (over 50!) and taken a ridiculous variety of medications and supplements and had various treatments and I’ve been to many more doctors. (And I’ve been too tired to write a new post with everything…)

I also have an over-reaching diagnosis, which I’ve written about quite a bit: Myalgic Encephalomyelitis (MEcfs), also known by the awful moniker Chronic Fatigue Syndrome, a neuro-immune illness with no treatment and no cure, and barely any research.

Also, although I haven’t deleted my gofundme account, and although I’m still very much in debt from medical expenses, I’m not actively seeking donations at this time. Thanks to everyone’s generosity, I was able to pay for the very expensive tests that were useful in determining what’s wrong with me.

Now on to my original post:

No filter. No makeup. No sleep. In my studio. Middle of the night, thanks to insomnia. I don't look sick (in fact, I think I look like I'm 12), but I am. Very, very sick. #InvisibleIllnessLooksLikeThis

No filter. No makeup. No sleep. In my studio. Middle of the night, thanks to insomnia. I don’t look sick (in fact, I think I look like I’m 12), but I am. Very, very sick. #InvisibleIllnessLooksLikeThis

Since I’ve blogged and tweeted and Facebooked, etc., about my struggles with my health, and since I’ve asked for donations to help pay for all my tests and meds and doctors not covered by insurance (and they all aren’t), I thought I should give an update.

And (deep breath), it’s a long one. I’ve been working on this post for days, and according to WordPress, I’ve made 61 revisions. So, I’m just gonna finish this shortly and send it out in the world, come what may.

Now, some people might think that I’m sharing way too much information, and I’ll admit: it is a lot. But there are a couple reasons I’m doing this.

First, if you are suffering emotionally or physically, or both, I want you to know you are NOT alone. There are lots of us out there dealing with a variety of ailments, like Hypothyroid Mom; Meghan O’Rourke, writer for The New Yorker; or Sher Bailey, who started a blog about having Toxic Mold Syndrome; and all of the people who are contributing to Stigma Fighters in an effort to explain more about mental illness.

Second, I am writing this to encourage you to SPEAK UP. Typically, us women are taught to “be quiet” and “be polite” and “not make a fuss”, but I’m telling you, STOP ALL OF THAT. Right now. Be noisy. Scream. Make your voice heard. If your doctor won’t listen to you, find another one. (And yes, I know it’s not easy. Do it anyway.) Make a list of symptoms (like I have, below), and take it to your doctors. Don’t wait until you’re in the office to write everything down, because you won’t remember.

Third, do some research, like I have. Read as much as you can about your symptoms, and see if any of what you read makes sense to you. Then take that information to your doctor.

Fourth, I am asking for help. Some of you have been exceedingly generous in donating to my gofundme, and I’m forever grateful. You don’t know how much. But I need more – I’ve already spent almost $7,000 this year on my health – $4,000 more than I set for the gofundme goal, and I’m only at 60% of that goal.

Because, even tho I have worked my entire life, and have been self-sufficient since I was 14, I can’t work now. And haven’t been able to work since last December. I have no idea how I’m going to feel from day to day, and the majority of the time, my brain just won’t function. And don’t get me started on the insomnia… and the depression all this causes… so I’m hoping I can get a bunch of people to donate just $5, and that would help so much.

So here is the state of my health:

My symptoms (in no particular order):

  • fatigue (always)
  • all-over chronic pain (always)
  • joint aches (always)
  • muscle aches (always)
  • back spasms/pain (usually mid-lower back)
  • anxiety, depression (suffered my entire life; some is situational, some is caused by chemical imbalance, and a LOT by genetic issues; it runs in my family)
  • migraines (light & noise sensitivity; recently began feeling nauseous with the migraines), headaches (not unusual to have a low-grade headache all the time)
  • hurts to stand up straight
  • tingling in fingers and lips (intermittent; soooo annoying)
  • insomnia (chronic, as long as I can remember)
  • periodic flares where symptoms increase to unbearable, excruciating pain, where I can’t even put one leg on top of the other
  • periodic lupus-like rash on my face & elbows
  • previous rash on back (was told at the time that it was shingles, but looking back, it didn’t fit all the symptoms)
  • stress increases symptoms
  • hot flashes but also sometimes cold night sweats
  • easily bruise; bruises don’t go away for a long time; often don’t know where the bruises come from
  • sometimes fingers are cold for no reason
  • often hungry, but can only eat small meals
  • occasional falls for no reason
  • joints pop
  • Inability to grip well… so problems opening things & holding on to things (recent test with new physical therapist show that my left hand is worse than my right; right test at “25″ and left at “15″ {no idea 25 or 15 what})
  • alcohol makes the pain flare worse
  • arches on feet “fall” and hurt
  • sometimes limp when I walk just because it hurts
  • stomach issues
  • eyesight degeneration
  • occasional panic attacks (generally situational)
  • crazy nightmares
  • inability to shut mind down
  • mildly OCD
  • weep easily and often
  • keep forgetting stuff, including pieces of my “routine”
  • PTSD from childhood abuse
  • some social anxiety

Pile of my meds and supplements. I have to put together a spreadsheet to keep track of when it all needs to be taken.

Pile of my meds and supplements. I’ve put together a spreadsheet to keep track of when it all needs to be taken. It’s a very long list.

I’ve had blood drawn (probably, if added together, all of the blood I have in my body) for every test you can think of, including nutritional evaluation and DNA testing. I’ve had X-Rays. Given urine and stool samples. I’ve had three MRIs (from my lower back to my brain). I’ve had an ultrasound of my shoulder. I’ve suffered through a camera in my nose, a colonoscopy and an endoscopy. (Prep for the colonoscopy was 1,000 times worse than the actual procedure. That was one of the worst and most disgusting days of my life. The prep day.) (And, to add insult to insult, I got a cold, thanks to screwing with my immune system, so I’ve been completely useless this past week.) (AND I have to wait for 2-4 weeks for results of the biopsies taken. Oh yay. Waiting.)

I’ve had a lumbar medial branch block (shot in my spine), I’ve had a shot in my shoulder, I’ve had a shot in my sternum, and next week I have a cervical shot in the spine. I have two back braces and splints for my wrists.

I’m taking a huge variety of medications and supplements. I use essential oils. We’re testing the house and my car for mold (not as difficult as it sounds; just costs money).

I’ve tried a gluten-free diet, which did nothing but piss me off. (I felt better when I started eating gluten again.) I’ve tried a dairy free diet. (And learned that I can actually live without milk, but that was it.) I’m supposed to be on an anti-inflammatory diet, a low-sulfur diet, a no-sugar diet, and now I’m supposed to go on a low-mold diet. Between them, I think I am only allowed to eat air. (And as my pal Gareth mentioned, the air cannot be bottled, canned, or have been anywhere near pineapples.)

I’ve even had a mammogram (first ever; normal) and a gyno check-up (after 4 years, figured it was past time).

Health Care Practitioners I’ve visited:

  • rheumatologist
  • chiropractor
  • acupuncturist
  • holistic and integrative medicine (my main provider now)
  • pain management specialist
  • orthopedic doctor
  • gastroenterologist
  • ENT
  • physical therapy (on second round with new therapist, which i just started; have tried two other PT practices)
  • massage therapy
  • rieki practitioner
  • psychologist
  • eye doctor
  • life coaching
  • counselor
  • family doctor (ya know, a general practitioner)

New doctors I’m going to visit in the next few weeks:

  • endocrinologist
  • neurologist
  • mental therapist

AND I have a CT scan of my sinuses coming up.

In other words, I’ve done and am doing everything I possibly can. And seeing every doctor in the book, practically.

So what all the doctors saying? I bet you’re asking. Well, I don’t have Lyme. My liver and other organs are functioning normally. My cholesterol is perfect. My blood pressure is always fine. I’m not starting menopause or even pre-menopause. But:

In no particular order, here are my official diagnoses:

  • scoliosis (untreated when I was diagnosed as a teen)
  • depression & anxiety
  • fibromyalgia
  • osteo arthritis
  • costochronditis
  • adrenal fatigue
  • nutritional deficiencies
  • PTSD
  • chronic Epstein Barr Virus (normal numbers are 0-18; at first test, mine was 417; after two rounds of meds, it had lowered to 381) (EBV is a cousin to mono, and helps cause the constant fatigue)
  • inflammation
  • genetic mutations (of the 30 genes tested, I have eight with one mutation, and three with double mutations)
  • chronic back pain due to cervical spondylosis with myelopathy; disc degenerations; schmorl’s nodes; disc bulging
  • migraines, headaches
  • deviated septum
  • gastritis (a remnant of my days of having GERD, prior to having the surgery to correct it)
  • sluggish thyroid
  • possible growth hormone deficiency
  • high ammonia
  • low iron
  • low testosterone
  • left shoulder pain due to: a tear in the rotator cuff, ac joint degeneration, referred pain from bicep tendon inflammation, and bursitis; slightly less pain in right shoulder
  • TMJD
  • carpal tunnel syndrome

The most important diagnosis: Toxic Mold Syndrome. (On one test for this, normal is range is 23-63, and my number is 29,820!!!!) This actually explain most of my symptoms and covers most of my diagnoses. But the treatment is hell. (See diet, mentioned above. Plus, ELEVEN new medications and supplements. PLUS, doing things to clean the house, and washing laundry in special detergent, and getting special air filters, and if worse comes to worse, having a professional mold treatment company clean the house, NONE of which is covered by insurance.)

And by the way, after all my reading, and finding Sher Bailey’s blog post about being diagnosed with toxic mold after being told for so long that she had fibromyalgia, I diagnosed myself. I took the info to my doctor, who ran a panel, and agreed, and who sent me to the ENT, an expert on toxic mold syndrome, who officially diagnosed me with it.

And, as I’ve stated before, and you can see in my picture, I look perfectly normal. I don’t look sick (just a little tired). I don’t look like I need 18 different types of doctors/health practitioners, or that I have 23 official diagnoses.

But, I’m still here. I’m still fighting. Sometimes, my fight is weaker than that of a newborn kitten, and lots of times I’m crying my eyes out, but I keep going. And I hope that all of this info is encouraging to someone else who is struggling. (Or just makes you feel better about where you are in life. That’s fine too.)

And, as Granny Weatherwax, the beloved Terry Pratchett character says, “I ATE’NT DEAD”. And neither are you.

More ramblings / other posts you might want to read...


About dSavannah

~ #disabled #spoonie fighting numerous, chronic, painful #InvisibleIllnesses ~ also #wife #feminist #ally #advocate #papyrophiliac #DogCatTurtleWrangler
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