I'm the zebra

I remember early on at a medical appointment, the forgettable doctor told me the following. "We have a saying in the medical industry that if you hear the sound of hoofs look for horses, not zebras". She explained that what I was experiencing was common and not likely to be something rare. She was dead wrong.

I later looked up her strange "zebra" analogy to find it is taught in medical school in regards to "a very unlikely diagnostic possibility". I'm not a doctor, but do have a masters degree in my field of practice, mental health. What I was trained was to "consider all possibilities, listen to your client and rule nothing out". So why do we treat the mind any different than the body? Shouldn't doctors be looking for horses AND zebras? And are zebras really so rare after all? I mean... if you're on an African plain wouldn't you be shocked to see a horse instead of a zebra? 

To put that in medical terms. Maybe doctors aren't finding zebras because they're too busy looking for horses. Seriously. The example of the "unlikely diagnosis" is "When someone develops a cough, a virus or infection is a logical cause and tuberculosis is the zebra". As someone who has been treated for TB I find that to be a bad example. How about testing for all of it?

I mean how can a middle class Caucasian person living in a "safe" small city with good food and clean air not only contract tuberculosis, but also have Rheumatoid Arthritis, survive a brain tumor AND have a very rare muscle disease? (Yes, I'm talking about myself here.) I don't think I'm the only zebra at this watering hole. 

Doctors would be wise to rule nothing out and look for horses AND zebras. To take their patients concerns (and not "complaints" as another doctor of mine called them) seriously. And to admit when a horse really is a zebra. Come to think of it... I'm not a zebra after all. I'm a freaking zebra, unicorn, pegasus that poops rainbows! 

We Have Progress People!

At least it FEELS like progress, which is just as important. Also an important lesson, it's ok to cry in front of your providers. It lets them know in a real way how serious this is to you. Smiling and grinning through each appointment isn't always what's best, helpful or required.

Today was my appointment with my primary care doctor to be evaluated for an electric wheelchair. I came prepared (as usual) with my 1 page list of my symptoms related to "muscle weakness and fatigue" and a timeline of when it started and relevant dates (like when I started using mobility devices, etc...) I thought it was brilliant and helpful, but once again it was hardly glanced at. In my opinion this speaks more to how little time doctors have to spend with each patient rather than the quality of care they provide. 

Because I can walk more than 50 feet without any help (my max is about 200 feet right now) he feels I may not qualify for an electric chair. That's ok. I feel I have to try. The next step is to get ANOTHER assessment from a physical therapist. Oddly enough my doctor wasn't sure what that will entail, so I'll have to look it up (because Google knows everything!)

My husband went with me and was (again, as usual) SUPER helpful! Hearing him talk about how hard and scary this is and how neurology never responded to my messages made me tear up. I was glad to have him there to help advocate for me and stress that THIS IS SCARY! My doctor was very sympathetic and moved into "Super Doctor Action Mode" immediately.

He sent a message directly to Neurology for me and assigned us to a "Ambulatory Case Manager." He said they're like a patient advocate for complex cases when more than 1 specialist is involved. Sounds great to me! He urged us to be patient and hold out for my slew of appointments at the end of September. Then if those don't yield results he'll send me to a different neuro specialist. Wheeeee! More testing and appointments! But if it helps get results and answer questions it will be worth it.

I read a lot about other people battling complex RA or autoimmune problems where it takes them years and years (like 10 years) to get a diagnosis and some help. Out of everything that has happened to me over the last 3 years I'd say I'm most shocked by how rudimentary our medical system still is. It's just a lot of "wait and see, test and check, trial and error" and I really thought we were more advanced than that. 

It's easy to want to give in to frustration and anger, but I'm trying to see all the people I have helping me and looking out for me and focus instead on this feeling of being cared for that my doctor gave me today. For that I'm grateful.

Oceans of Tears

These last few days have been really challenging and I feel like I've cried enough to fill the whole Pacific Ocean. For starters I'm using Meg about 99% of the time I'm out of the house now. Which means people who know me, but don't know my heath challenges all scream "WHAT HAPPENED TO YOU!?" When they see me. It has been hard. Some people are placated with a simple statement of "I have a chronic illness." Or "I have an autoimmune disease." But others apparently need to know every single detail of my life and well being.

Rheumatoid disease... hell... ALL autoimmune diseases aren't known very well so if someone is genuinely interested I want to help educate them in a gentle way. But all that takes spoons. Many many many spoons.

I've also been craving a trip to the ocean. Fortunately I live only about 90 minutes from the sea. My husband, being the amazing man that he is, went out of his way Saturday to make sure I not only had a little time at the ocean, but that I got to stick my hand in it.

It wasn't easy, but he helped maneuver Meg down 3 wobbly gang planks to get me low enough to stick my whole hand in. It felt wonderful and made me so happy! I also felt like a poster girl for Rollator adventures. Go Meg!

The day that my spinal tap (lumbar puncture) was scheduled I went to Etsy and bought myself this little bracelet. I'm a huge fan of support in whatever form I can get it in. I could tell the spinal tap was going to be tough for me. I was pretty scared to get it done (apparently for good reason.) 

With chronic illness you need to be brave every single day. Some days just leaving the bed feels brave to me. And let me tell you that while I was having my spinal tap yesterday, 3 things helped me. 

1) My husband being there holding my hand. I don't know what I'd do without him. 

2) They asked me if I'd like some specific music playing... I chose ocean sounds and it was very relaxing and helpful. The seagull sound effects even snapped me out of a very hard/painful moment and almost made me laugh.

3) Looking down and reading these words on my wrist.

It was a very hard procedure with complications and unfortunately I'm also one of the 20% who get a nasty headache after. I was really hoping to skip that. Darn. I'm resting today, being brave and having kindness towards myself. And I'm leaning hard on my husband. Letting him comfort me, love me and dry my oceans of tears. I'll be stronger tomorrow. For now it's ok to just ride out the storm.

Back Breaking Work

My back MRI results came in very quickly. As for the MRI itself, let me just share that it was my second experience ever of having my back hurt so much that it went into spam. A 90 minute full back MRI is no joke. I used every self-soothing resource that I had in my big bag of tricks and still almost had a full panic attack (just from the pain.) I'll be avoiding those in the future as much as I can. But, the results were useful.

Always make yourself a "cheat sheet!"

My back isn't much worse than it was 17 months ago. The biggest changes were in my lumbar area. I have a fissure (that's new) and a "disk protrusion" that's hitting a nerve. That's coincidentally the most painful spot in my back. 

The results can be very hard to read, so I found "mapping it out" on a spine printout to be really useful. I'm not a doctor and always have to look up what all the words mean and turn it into English. Then it goes into my personal medical binder for future medical appointments.

The bottom line is that they found nothing that would explain my muscle weakness and muscle fatigue. That means it's likely not coming from back problems, but from something else (like RA?) 

This Wednesday I see a new neurologist, so hopefully she'll have some more insight into the mystery that is my body.

No Germs!

I call this one "Someone was coughing at the doctors office today."

Thank goodness for free masks.

Any Questions?

"Do you have any questions?"
YES! 

What's wrong with me and how can we fix it?