Meet Megan. Megan is an friend with whom I grew up. We attended the same non-denominational church, and should probably form a support group. Since developing my fibromyalgia, we now have another thing in common. Of course, I hadn’t realized that the first time I had seen her in years, and was one of those assholes who made comment on her psoriasis, thinking it was just bad poison ivy. But now, we are able to support and bitch to one another. Megan just started trying her hand at blogging over at Megmess.
1) So, what ails you?
Psoriasis; psoriatic arthritis; fibromyalgia; sciatica; 2 slipped discs; super vitamin D deficient; a whole stupid body that hates me.
I’ve been tested for Lupus 3 times, but every time the blood work is negative. There have been a few times throughout my life that I have been REALLY sick and no one ever figured out why.
2) When did you receive your diagnosis (diagnoses)? How long was it from the onset of symptoms before you had a diagnosis (diagnoses)?
Oh, man, psoriasis at 18 or 19. Arthritis sometime in my 20’s. Fibro and sciatica Dx in past year. [I had] symptoms for waaaaaay too long beforehand.
3) How does your illness manifest itself, (symptoms)? Does it or has it manifested itself in a way that is atypical? Did that delay receiving a diagnosis and/or does that require that you receive different medical treatment?
My body, apparently, prides [itself] on being the most difficult one to treat. My dermatologist told me I’m his toughest case. For my skin and arthritis I require pretty heavy duty meds, and still have plenty of issues.
My right hip is the best rain predictor there is.
My vitamin D is still low even taking rx vitamin D 1x a week, so the rheumatologist just told me to start taking it 2 x a week – raising my vitamin D level has helped with some of the weird traveling aches and pains
I had an extremely difficult time recovering from my gallbladder surgery & it’s kind of been a down ward spiral since then. That was the first time I was really completely and totally knocked on my ass.
My skin is hard to explain. Google psoriasis. It hurts.
4) Have any unconventional or naturopathic treatments worked for you? What are they?
Nope. Tried acupuncture once. No thanks. I do go to a chiropractor that I LOVE. But not all chiros are experienced and good with my set of issues. I’d tried chiropractic once before and, the last time I saw that one, it caused a fibro flare.
5) How has your illness affected your daily activities? How has it affected you long term? Are there things you used to love doing, but can no longer do?
I love going on hiking trails with my family, but I can rarely do it anymore. Likewise I like long family walks with the dogs, and that doesn’t happen often anymore either.
Driving hurts. At times wearing a bra hurts. Sometimes I can’t stand up to cook dinner. My husband bought me sharper knives, which helps when cooking. Cutting and prepping exhausts my arms and arthritic hands. So lame. I’ve swept the kitchen before and had to ask someone else to do the dining room because my back was not all about letting me stand anymore.
I have, twice now, had to ask my husband to come home to help me. I limit going up and down the steps as much as possible. One day my husband and I scrubbed the carpet where the dog had peed. My arms suffered for 2 days after. I’m so fatigued that I often don’t feel like doing much. The fatigue and pain makes me kind of short tempered some times too. I hate it. I have applied for workplace accommodations trying to be assigned to work at home. I am still waiting to hear the outcome. My commute is long, and just the pressing of the gas and the break pedal for over an hour each way causes significant pain. Trying to pretend I’m ok on the bad days in an office full of people with a fake smile sucks. Because I often don’t sleep well driving home after work is always interesting while I try to stay awake. I have literally driven to work and worked all day on 30 minutes of sleep before. My general quality of life sucks. I’m so scared, even when I don’t feel horrible, of overdoing it and setting off a flare. I miss my old strength. And omg, the brain fog. I used to be a really organized mom. Used to be. I get serious sensory overload sometimes now. While I love shopping, I find that it’s overwhelming and painful a lot of times. I’m doing a lot more online shopping these days.
6) How has your illness affected your mental health?
I’m pretty often a big depressed blob. Things that are often meant to be encouraging generally piss me off. Stupid pictures and quotes like “My illness doesn’t not define me”, “Everything happens for a reason”, or any bullshit lines about hope. Let me tell you: there is not a reason for going through this. My kids deserve better. Bullshit it doesn’t define you. It dictates every move you make. And what exactly are we hopeful for? I have 3 painful conditions that have no cure. Where is the hope in that?
7) How does your illness affect your family and friends? Have they been supportive?
I learned a long time ago that, when shit hits the fan, you learn who your true friends are. I keep very few people close to me these days, so it’s not a huge impact on friends really. My poor best friend gets frazzled, pissed off pain texts from time to time when I need to get it off my chest. But she lives several hours away, so it’s not like we physically get together that often.
My poor husband is incredibly supportive and helpful. I feel so guilty. I’m not as active as I’d like to be for my kids, but I do the best I can.
8) What do you wish people understood about your illness?
That it’s real. And that just because I’ve gotten pretty good at acting ok, (because no one wants to be around a whiner) that doesn’t mean I am ok. That the physical pain doesn’t compare to the mental/emotional pain.
Oh – and every single one of you people who have stopped me in the mall, while I’m on the phone, pumping gas, as a nurse taking care of your baby, as a teacher, and so much more to comment on my skin in incredibly rude ways, or be scared to let me touch your child: Screw you!
Particularly the bar that will remain unnamed where upper management fired me in my first few days in training when they saw my skin and ordered my to either wear long sleeves pulled down at all times or go. Or the restaurant manager who forbid me to wear shorts to work again, despite the heat and it being acceptable dress code, because of psoriasis on my legs.
And the classic, drunk guy at the bar I worked at for years who suggested I bath in my own pee to cure it.
I do not mind polite questions from people who I might actually know. But to the rest of the world who has crushed every ounce of self esteem I ever had from the time I was 19 and made me feel ashamed of my body –
9) What do you wish people understood about you in light of your illness?
I feel lost. I am doing the best that I can. When I suggest doing things a certain way, or not doing so many things in a day, etc., don’t push me. It’s really hard for me to recognize my boundaries and try to be proactive, but I am trying to do just that.
10) What has pissed you off the most during your journey with this illness?
My abilities to do and be as I want to as a mom sometimes being limited. The one thing I’ve always prided myself on is being a good mom.
11) What has been the most helpful?
My husband. Him loving me through the REALLY bad days and the good days. Him getting up in the middle of the night to get me pain medication, an ice pack, and sometimes a grilled cheese.
12) If you could shoot one of your doctors/healthcare providers out of a cannon because of their asshattery, who would it be and why?
Ha!! Because of differences in schedules when my work schedule changed this year I tried 2 different rheumatologist. Both of them. I’m now taking time off of work to go back to my original one and have told her I will never leave her again.