Good Doctors and Not So Good

I've learned a lot from having a chronic illness. Specifically about the American medical system and those who work for it. I think I had some serious rose tinted glasses when it came to doctors. Overall I'd had good health and anything wrong with me had been very straightforward. Even my years of endometriosis. But when it comes to having something that there isn't a clear test for or that requires years of multiple people guessing at what's going on with you, then that's where things get more dicy.

Doctor's don't like the word "guess" even though that's what they do with me. I have a rare condition that they "think" they know something about even though all they're really doing is guessing. It's a "best guess" but still just a guess none the less. 

I've learned that some people really suck at bedside manners. Some doctors think I'm doing a "self fulfilling prophecy" and "not trying hard enough to be well" (real quotes.) Others think they know exactly what's wrong with me and respond in frustration when I continue to be sick. Some are fantastic in person and then never respond to my messages between my three month appointment wait times. Some say they're going to give me referrals for services they think will help and then don't, or do it a month+ later (typically after I message them repeatedly). 

All of this takes a ton of time and energy. I told my husband the other day that when people ask me what I do for a living I should just say "I'm sick" because it's seriously a full time job.

Because I'm a visual person I'll show you how most of my appointments start out:

And then it can go one of two ways.

Poorly...

Or

Well...

I've only walked out of an appointment once. And let me say that it took me a very long time to even comprehend that just leaving is an option. They are there for me and if they're not helping, or worse... I can always just get up and go. No need to waste my time or theirs.

In general my encounters have been very positive. Most doctors genuinely care and are trying their best to help me. Some even admit that they don't know much about my condition and are just trying their best to help my symptoms. I seriously appreciate that.

What do I do?

I'm feeling worse every day. Both my muscle weakness and this horrid dizziness! Today I bought some Claritin as a last ditch effort to try and "solve" it myself. I think it's part of the myopathy, but I'm not against trying everything I can first. Literally the last thing I can think of is that it's allergies and my body is just having a two year old volcanic meltdown.

That would give anyone allergies, right?

What makes the dizziness better is sleep. What makes it worse is everything. My doctor is sending me to an ENT to rule out any kind of vestibular issue. Like I said... I'm open to anything. I even called Radiology today to see if they had any cancellations and could get me in for by brain MRI sooner than 11 days. Not that 11 days is that far off, but I seriously feel like each day is a big deal.

Remember The Hunger when David Bowie's character starts aging instantly? He finds Susan Sarandon, a specialist in aging, and tries to talk to her but she leaves him out in the waiting room. A few hours later when she comes back he's aged like another 40 years. Yeah... it feels like that. 

I know how you feel David. 

Along with the dizziness my muscles are getting worse. I feel a sense of urgency I haven't felt in a while. Each time I do something I wonder "Is this the last time I'll be able to do this?" I put something away in the garage today and randomly fell down. It was pretty scary.

So "what do I do?" What do I do when each day I feel worse? When I have to wait and wait for each doctors appointment and for answers that are few and far between? My insurance declined our appeal for the full genome sequencing that might have shown some helpful mutation. Or maybe not. Now we're waiting for new insurance to re-apply. So what do I do every day?

I get up. I do what I can. I skip what I can't. I ask for help when I need it. I keep calling doctors. 

SSDI is looking like it might be in the near future. 

I miss my work. I miss my old life. Today is just a "poor me" day and that's ok too. Tomorrow will be better. I hope. 

What the heck body?!?

At 9:30AM this Monday my body decided to freak out. I was at work and suddenly felt zaps in random parts of my body that made my muscles twitch. It felt like being mildly electrocuted. I also felt very weak and dizzy. My vision blurred and I struggled to focus. My face felt more numb than usual and it was a challenge to talk. I held on for as long as I could, but finally texted my husband to come and get me. I was afraid to drive given the dizziness and blurred vision.

My gut reaction was to go to the hospital. Even to call an ambulance as I wasn't sure how far I could walk. But what would they do? What could they really do? I didn't feel like I had experienced a stroke. My heart felt fine. It felt like my Myopathy had suddenly gotten worse for God knows why or how? I have a rare condition and there's nothing the hospital can do about that other than test me for a stroke. It would be a waste of everyone's time.

Instead I had my husband call my doctor and talk to the advice nurse. They said to go to the hospital. I refused, laid in bed and cried. My husband comforted me and made me feel a lot better. All of this was very scary. My little dog also gave me comfort, refusing to leave my side.

She even lurked in the bathroom with me. 

I deduced that I might have a bladder infection and that could have sent my body into "CODE RED! SEND ALL ENERGY AND RESOURCES TO INFECTION FIGHTING!" I started antibiotics yesterday and am feeling a little better today. I hope to go back to work tomorrow.

It's terrifying how fast my muscles can just shut down. How even talking can become a big challenge. I know it was scary for my husband to see me like that too. Chronic illness isn't for the weak! Every day is some kind of new test. I'm so lucky to not have to go through any of this alone.

What's On My Mind

After the heaviness of the last few posts I thought I needed a bit of balance. So here's what's on my mind today (just in case you're curious.)

1. Why isn't there a "Grub Hub" food delivery for cake? I would order a big piece of gluten free chocolate layer cake today to be delivered right to my door.
2. For the first time ever my "home care" directions from my doctor says "drink caffeine and lay on your back." Well... if I MUST! Coffee in bed it is! There is an upside to a lumbar puncture after all! Who knew?
3. Why doesn't the Disney Channel just endlessly play classic Disney movies? What a loss! I'd stream that.
4. Dogs are a lot of work.
5. Someone needs to invent a laundry hamper that's also a washer and dryer.
6. Why aren't all washing machines located in the closet? Wouldn't that make life so much easier?!
7. I think I'd like to have wings... and a tail. That'd be cool.
8. I wish I had some cake.
9. Rocks are cool. And shells. Neither require any kind of care. I like that.
10. I don't have enough jewelry.

Good news and a bad mood

I had my gauntlet of appointments yesterday. The good news (from the Ophthalmologist) is that the Plaquenil didn't damage my eyes. I wasn't on it for very long, so I didn't think that it did. He said that my increased light sensitivity was likely an "uncommon side effect" (add that to the list) from the Plaquenil. He also said that seeing after images (like looking at a bright light, then away and you can still see it) doesn't happen in the eye, but in the brain. Apparently that's called "Palinopsia" and can be caused by some medications.

The bad news is that he found very very early signs of cataracts. It's never good when a doctor looks at something and asks a question right away. (Doctor looks in my eyes) "Have you ever been put on steroids?" SEE!? Not a good sign. 

My PCP (primary care provider) appointment later that day was short. Well, the wait wasn't short, but my time with him was. He was glad that the muscle weakness is doing a bit better. I GAVE HIM MY LIST and hearing him read my symptoms out loud was a bit helpful. But frankly he seemed overwhelmed and told me he was glad I had the neurologist appointment soon. He said he wants me to keep the appointment with the crappy rheumatologist (that I don't like) because I need to check in with one, then he'll get me a new one. Fine. Oh yeah. And I have a bladder infection.

I need to buy myself some "cranky day" flowers

I'm lucky that I didn't have anything that I super "HAD" to do today because I've been tired and cranky all day. I took a nap and just woke up even crankier. I hate it when that happens. I realized something important though. 

I have a major cycle that I go through again and again.

1. Try and help/cure myself with diet/exercise/information
2. Whatever it is gets too bad (pain, etc…) and I seek medical help.
3. Try a drug that helps at first really well, then gives me awful side effects.
4. Stop taking the drug because of side effects.
5. Go back to step 1.

I'm feeling like I'm back at step one, but resisting. Like I've said in the past... I want to trust my doctors and let them help me. I want to work WITH them to do what's best for my body. But most of the time I just don't feel that's happening. I feel I'm the one educating myself and them along the way. When I first saw my rheumatologist I told her "You need to understand the impact this has on my life. If we're talking a 1 to 10 scale I'm at a 7 for it impacting my life." Today I'd say that's an 8 going closer to 9. After all the money and time I've spent trying to get help I had thought that number would be going down... not up. I feel worse two months later than I did sitting in her examination room. 

But... I'm trying to remain hopeful. I'm doing what I can and keeping with my appointments. But today I'm cranky, a bit angry and really tired. And that's ok.

love offering of blackberries from my husband

Things that make me feel better when I'm crabby:

• Staying in my pajamas
• Taking a long shower, then changing into clean pajamas
• Telling my husband that I'm cranky and letting him be supportive/sympathetic
• Explore why I'm feeling that way
• Talk to myself like I would a fussy toddler (give myself lots of empathy)
• Know that I'll feel better at a later time (it won't last forever)
• Take a nap (sometimes it helps, sometimes not. But if I'm asleep I'm not crabby)
• Watch trashy TV
• Drink a lot of water (I laugh when my doctors recommend this. If they only knew how much I down in a day!)
• Wear my husband's deodorant (I know that sounds strange, but the smell makes me think of him and boosts my mood.)