Typically, I'm more, yell-profanities-and-make-an-ass-out-of-myself-through-bad-behavior mad.
But I'm done. DONE. Stick a fork in me.
Yesterday, after much fight, I lost a big battle. The war is not over, but I am sitting around stewing in my misery, sad, crying, frustrated.
Here is a summary of what Lyme disease (contracted in the mid-80's) has given me:
- constant joint pain
- somewhat constant muscle pain
- an almost regular limp
- Skepticism---imagine someone with a debilitating illness, yet they look fine. Healthy, maybe a little chubby (OK, A LOT), good coloring, keeping her hair, etc. But she tells you she has this awful disease, and she can't work much, nor commit to much. And, she will likely act like a total flake, committing then forgetting. But she blames it all on a disease that has no mainstream support or treatment. Yeah, THAT. I can see it in people's eyes. The ones that knew me before are less skeptical. But new people, it's hard to open with, "Hi, I'm Aimee. Don't bother telling me your name because I have a weird disease that makes me depressed, in pain and forgetful. Nice to meet you."
- 4 (and counting) "Temporary" handicap placards, one right after the other, waited in line for at the DMV, every 6 months
- touch sensitivity, so when people lean on me, hug me, jokingly tap me, or pretty much any other contact, it has me saying "ouch" or worse (not the greatest, when you're a mom of kids who like to snuggle, and a husband who likes to "snuggle" too)
- a veritable potpourri of over 40 different pills to take throughout the day, set by a timer on my smartphone
- Regular doctor appointments-I see my Lyme doc monthly, my therapist at least weekly, my acupuncturist at least monthly (more when we can afford it), the pharmacist every couple weeks, my primary a few times a year unless things get really bad, and various people for consults (surgical, etc). When I'm not at an appointment, I am working on scheduling one, filing forms to insurance reimbursement from one, or appealing the denial of one claim or another
- I avoid people---I have become withdrawn, anti-social, and irritable.
- I am tired. Not, need-a-nap tired. But fatigued-lay-on-the-couch-and-barely-schlep-to-the-bathroom tired. It's different, and it's exhausting
- Planning---whenever the rest of the family wants to do something, I have to think about whether I can, and what I need to do, to be able to do something. Cross Country Meet? I need a chair, shade, and possibly full coverage for my skin, in the sun, for several hours. A weekend away? I travel with 3 inch memory foam, a wide range of clothes, and extra medication so that if I have to be around people for longer than a couple hours, I can hang with the extra stimulation. Lord help me if I'm light sensitive that week. Disneyland? I have to borrow a mobility scooter, and after 4 hours, I'm a wreck. Basically, my Lyme disease needs tons of accommodations.
- Pity-people I love, that used to rely on me, respect me, and expect great things from me now have lots of pity. I have less invites than I used to, and it's hard to explain to people: "Please still invite me, even though I usually say no". It sucks, having a friend that takes so much work, ya know? But it also sucks being left out. I can't win.
- Side-effects-at any given time, my meds (which change monthly, sometimes more often) cause me to be sun sensitive, alcohol sensitive, angry, grouch, bloaty, feeling slightly drunk, dizzy, spacey, imbalanced, and incapable of losing weight.
- Also, I have to detox---Lyme disease causes some nasty side effects WHEN THE TREATMENT ACTUALLY WORKS from which I need to detox-dry brushing, using a personal sauna, lemon water all day, and Epsom salt baths are a few of the things I have to stop living my life to deal with. And, I should be detoxing daily. A good friend detoxes for over an hour, EVERY DAY. It's a fucking part-time job.
- I've lost much of my cognitive function. I forget names of people, offending them at every turn. I forget appointments, I forget obligations, birthdays, anniversaries, etc. And, the kicker is, that used to be my THING. I was thoughtful, planned elaborate surprises, remembered to get everyone to sign the card, blah blah blah. Now, I can't introduce people without looking like an ass. And that's one of the least annoying things about my memory loss. How hard do you think it is to explain to your staff why the phone got shut off? Twice? Not very confidence-building, I assure you.
If you love me, know me IRL, care about me in any way, do this ONE THING for me. Watch this movie:
This is Under Our Skin, a documentary about why I can't get the treatment I need. Last year, we went out-of-pocket over $12,000. I am one of the lucky ones: I found a way to HAVE that much to spend. Not everyone is this lucky. To date, the biggest killer of people with Lyme disease, right before cardiac issues and stroke, is SUICIDE. People give up. They feel like they have no hope. I get it. I really do. Luckily, I have an amazing team of people that hold me close, check on me, keep me in their hearts and prayers. And, I have a job still. I don't work at it much, but I have the distinct luxury of being a business owner, and having a ROCK STAR husband that has picked up my slack at work (along with some amazing people AT work-you ladies and the BOMB).
One last favor--- share this movie. Share it with the people you love. Share it on social media. Share it with your favorite congressperson (is there such a thing these days?) Lyme disease is in ALL 50 STATES, and the CDC recently admitted that annual new cases number at around 300,000. I heard a person with HIV once admit he was glad he didn't have Lyme disease. Can you imagine a disease that is degenerative, that slowly (sometimes quickly) takes everything away from you, all the while the agencies that should be supporting you are telling you it's all in your head, doesn't exist, or is not treatable? And this isn't just happening here: Europe, Australia, New Zealand, and other countries and continents are having the same problem with identification, treatment and acceptance.
But, I am dejected, ignored, dismissed by the IDSA and the CDC, who won't acknowledge what I have, or work on an appropriate treatment. So, I see a doc that can't take insurance for fear of scrutiny, and my treatment is WAAAAAAAY outside the scope of what is "acceptable" in those damn IDSA guidelines. Having friends and family support you is HUGE, I know people that don't even have that (who would fake this? Who would pick this life???). But without aggressive treatment, I don't see how I will ever get into remission.
Remission. Yep, not CURE. You see, when Lyme disease has been spending a couple decades burrowing into your tissues, heart, muscles, and brain, remission is the hope. And there isn't a simple test---it's more, "can you live with this crap?" "I guess so" "Congrats!!! You're in remission!!!"
GAH. MAD MAD MAD.
I promise, I will work hard to do a funny post, soon.
Kisses (and gentle hugs),