Possible Answers

Yesterday my doctor let me know that my latest genetic testing came back with something. She said I have a mutation on my HADHA gene, but that I'm just a carrier. She thinks that I'm a "symptomatic carrier" (who knew there was such a thing!?)

The treatment for this disorder is to not eat anything that's a "long chain fatty acid" as my body possibly can't process it. And don't fast.

(Click to see images bigger)

I felt very happy to possibly have some answers. We knew it was a Mitochondrial disorder, but not particularly which one other than the COQ10 processing gene being mutated. She said "This is the first test to come back with a definitive mitochondrial link." A missing piece of the puzzle being clicked into place.

So with that news and my wanting to lose weight anyway my eating is about to undergo a huge change.

I did a lot of research and this is what I found out. I really wish there was a "Short chain fatty acid cookbook." Sadly people don't eat like that. Basically a Vegan diet without soy is the best. Super lean meat seems ok. Not for all the time but occasionally.

I used to be Vegan years ago. I remember being hungry a lot and missing burgers. Ha ha. But ethically it felt really good.

There are a lot of gourmet beans on the market. I can splurge on those. Same with rice. So many kinds to chose from. Summer is the perfect time for lovely fruits and veg. I'm lucking I didn't find this out in the dead of winter.

My hope is that I can halt my disease or even reverse some of it. I barely dare to let myself dream of a healthy normal life full of nature hikes and sex. In no particular order.

(Thanks Mom for the wonderful collage!)

Medical Catchup

It has been a while since I updated what's been going on medically. So here's the skinny...

My leg is feeling much better. It feels like it was maybe inflammation that pinched a nerve or something and just took a long time to heal. My MRI came back fine and neither the sports doctor nor the rheumatologist could find a cause for my extreme sudden pain. BUT...

The rheumatologist wanted to rule out some autoimmune disease possibly going on. He ran some labs. The results were interesting. So far it didn't flag for anything specific. But it did show up positive for many different things. I have a message in to him to see if we're doing more testing, or if that's the end of it.

Is this English?

Gotta love lab results.

I've actually been feeling better energy wise and have been trying to push myself daily physically. I'm sore all the time, but I feel good about stretching my body in what I can do.

I went through two treatments of dry needling. It did help my neck and shoulders. Only during the last few days have I been having pain there again. It's almost like intense acupuncture. It lasts a lot longer than that for me and I get goldfish crackers after. I'm not sure it's worth the discomfort of the process though. 

I'm still getting my Botox for migraines every three months. However I changed my monthly injections from Amivog to Ajovy. Ajovy is supposed to be just as effective without the constipation side effects. I've only had one dose so far. But I'd have to say it works just as well as Amivog, maybe even a little bit better.

Thank goodness all the rain is done. That change in barometric pressure all the time was incredibly hard on my head. I can actually feel sharp pain where my head plates are when the weather shifts. It's not a fun experience.

The pool is back open and my mom and I had our first swim last Saturday. I love the water so much. I feel like I can do anything in it. It's so supportive. Getting out is a monster though. I feel triple my weight. I just try and go really fast. That helps.

After recently topping 293.7lbs I pumped the breaks on my eating. My all time heaviest is 297 and I got concerned being so close to it. I can feel the difference in my body a lot if I get over 280. An adult male gorilla weighs 300lbs. That's pretty big for a Vegan. And a little too close to my size for comfort. 

Yum Easter candy!

What's life without treats now and then?

Fortunately my garden is doing well and the summer produce is ready for planting. That will help me eat more vegetables. Here's my latest haul of broccolini, purple broccoli, sugar snap peas and chives.

I also have my beautiful back patio to spend time in. It has been fantastic to eat out there while the weather is springtime cool and breezy. This Friday we're doing a family dinner and breaking in the Hibachi for the first time. I'm very much looking forward to it.

Symptom wise I'm feeling the best I have felt in a very long time. My sinus infection cleared up. My leg pain is down from an 8 to a 2. My energy is the best it has been since I can remember. And it's springtime. I'm taking each day as it comes and living my best life.

Max does his part to help.

What Comes Next?

Almost a month has gone by since my last post. Many things have changed and much has stayed the same.

I passed my licensure and am now a fully certified Psychotherapist. That's very exciting news. I passed on my first try despite the heat, a mask and a migraine. I felt and still feel a huge tidal wave of pride at that accomplishment. It also marks with a big period an enormous part of my life. Endless schooling, three degrees, 3,000 hours of practice, studying for millions of hours and now a framed certificate on my wall publicly declaring that "I DID IT!" 

What comes next?

That's the part that has changed very little.

I still can't function at all without my Botox shots for migraine every 3 months. Though by the end of month 2 it starts to wear off and then I'm a mess once more. Dizziness increases, pain, sound and light sensitivity, seeing things that aren't there, my memory gets even worse (which is really saying something!) You get the general idea.

Then there's the pain. The pain in my body is constant. I rarely take anything for it because I feel pain is the communicator. Sometimes that communicator is broken (like my migraines). But sometimes it's a valid message. I don't want to shut down that relay with my body just yet. 

But the number one ruler of my life is fatigue. When I become exhausted all systems stop. My memory, focus, ability to talk easily, train of thought, muscle strength, all go out the window. This happens daily, usually around 12-3PM. I rest and sleep and feel better when I get up. If I don't rest and sleep it gets worse till my muscles start to shake and spasm and I get cold sweats. 

When people say to me "Now that you have your license you can start seeing clients again!" I cringe. They have no concept of what goes on in my body. In their defense I also "fake normal" really well. "You can just see a few online" the friendly person might say. But that involves the ability to be there for the person 100% and many hours of record keeping, preparation, etc... I'm not just a face on a monitor. 

Therapy is out. 

So what comes next?

I'm essentially taking some time off to mull that over. I'm vaccinated and enjoying being social a little bit again. I'm looking forward to taking a few small road trips. You know... cutting myself a break!

For the future I'm considering a few ideas. Writing a mental health book is the first thing that comes to mind. Both an interventions book for clinicians and one for consumers. I like the idea of writing because I can do it anytime I feel up to it.

Right now I'm swimming often at my mother's pool. Trying to work out my CPAP machine. Attending appointments at my muscle clinic, my migraine neurologist and my regular doctor. Spending time gardening (when my body allows it), cooking (see previous comment) and hanging out with my ever-fun family.

We'll see what comes next.

Safety First

 

My motto for 2021 is going to be "SAFETY FIRST." And I'm going to start by postponing my licensure exam. My Mom and I had a good talk yesterday and she pointed out that with the COVID mutation in California and me being so high risk, it might be wiser to postpone. I completely agree.

Aside from risking death by taking a four hour test in a tiny, window-less room, my migraines have been awful. I'm not talking about head pain, although that happens sometimes too. I'm talking about being very dizzy, exhausted (not just fatigued) and my eyes being unable to focus. 

Luckily I have my every three month appointment with my migraine neurologist this Friday. But I'd like to get that more under control (if I can) before taking my big test. 

So this year I will go slow (I tend to be a big rusher) and take my safety seriously. I will advocate for myself and share more openly what's going on with my body. People only know what you tell them and I tend to not tell people much. Even those closest to me. 

I will also let others help keep me safe. That's a big one! 

Safety first.

Everything else second.

February - Where I'm at

I'm not kidding when I say I'm a full time patient. In one day I had three medical appointments. In one of them I learned the joys of what barium in all its forms tastes like for a Barium Swallow Test. 

(And why is the woman grinning madly? Why it's because she's trying not to vomit while holding massive amounts of barium in her mouth of course!)

Don't throw up or you'll have to do it all over again!

I also got to have this lidocaine nozzle shoved up my nose before a camera tube followed. Who knew they look at your throat through your nose? Now I sure do! (Kidding, he didn't "shove". He was very gentle and I'm being dramatic because I can.)

This was the petite nozzle that went up my nose. 

Only about 4 inches.

TAH DAH! My voice box and surrounding muscles. 

See the resemblance?

The tests all went well and they found some interesting things. Myopathy that affects my voice and muscles in the back of my throat that tire just like the ones in the rest of my body. They want me to see a speech therapist to get trained in some lung exercises to help protect me from pneumonia. I asked if I could just blow bubbles and pinwheels instead and the dude didn't even crack a smile. Doctors are just too serious sometimes!

So here's medically where I'm at:

• Referral for EMST (fancy for lung stuff) through a speech therapist
• Occupational therapy for my tweaked shoulder
• Occupational therapy to maintain muscle strength (even though strength isn't my issue, it's stamina)
• March 11th is my neurologist consultation for Botox for migraines (not the actual procedure. Hold your horses Ms. rushy rush! You have to be consulted first!)
• March 19th is when my wheelchair will finally get picked up for the modifications I've been trying to get since October (a higher headrest and knee abductors)
• March 22nd I check back in with my primary care doctor about everything
• Working on getting a nebulizer for home after needing urgent care and the hospital last year for breathing issues (mostly after travel)
• My teeth are clean, but I need a few procedures, so that continues in April

But what about FUN!? What's going on that's NOT related to medicine or illness?

• I'm enjoying the new show Lego Master with my honey
• My mom and I have a blast at our weekly Trader Joe's run
• I try and take Sweetie out every day, even if it's just around the block
• Daily I sit on my shower stool and pretend to be a mermaid while in the shower
• My husband and I are going to a Capitola beach house with friends in early April for the weekend
• My mom is taking myself and my son to Monterey during his spring break (one of our most favorite places in the world!)
• I just planted a little herb garden by my door
• The nature here is already springtime beautiful! I try and get out in it as often as possible
• I painted my toes rainbow and they make me incredibly happy

The Current Plan

I haven't been talking about RA much lately. The Cymbalta I've been on has really cut down my joint pain (and helped my mood to boot!) My symptoms had seriously decreased till the last few days. For me stress = flare. Fortunately this time it's a small one. I know what to do. Wear my compression gloves and take my foot off the gas of productivity and rest rest rest. That's the plan for today.

My Rheumatologist isn't treating my RA until neurology is done with me and I think that's going to be a while. He's not sure if my sudden muscle weakness and muscle fatigue is connected at all to my autoimmune system, or if it's something neurological. So this means I'm in some kind of strange limbo with my neurology team running endless tests to try and find a cause. So far, nada. Although they did find my brain tumor, so I feel a bit rude nagging them.

Here's where I'm at so far in all this "chronic illness" health mess that is now my life:

• Next Tuesday - My first full brain MRI post-tumor removal
• Next Thursday - My first electric wheelchair is coming
• Monday November 5th - My first day back at work
• Wednesday November 7th - My 2nd follow up with my neurosurgeon (my husband also leaves for a 3 day business trip. SADNESS!!!)
• Wednesday November 14th - The long awaited EMG on my muscles with neurology
• Wednesday November 21st - I meet with the head of neurology in hopes he has some new ideas

Did you catch that I also work? And apparently I'm supposed to do that AND all these appointments every... single... week... Can you read my frustration between the lines?

Honestly I wanted to quit after the EMG and be done with neurology. But my husband made a very good point. He said "This isn't a wrong order at Carl's Jr that you just shrug and take anyway. It's a major health problem and we need to do everything we can to get to the bottom of it." He's totally right (of course.) I'm just exhausted with all this and I don't know how long I'm supposed to keep on going with these endless tests and appointments? 

When you struggle with chronic illness, any illness, it's impossible not to have it just take over your life. My life has changed completely from what is was even just 9 months ago. I have to constantly gage my energy, spoons and ability and that alone is exhausting. Add my job and then, you know, important relationships and I'm spread very thin. As Bilbo Baggins said in the Fellowship of the Rings "I'm tired Gandalf, like butter scraped over too much bread." Word Bilbo. All the feels!

Intense Week

Help Me Jesus!

That's what my Nana used to always say when she'd get stressed. Well, this week was for sure a "Help Me Jesus" kind of week. 

1. It was my first week working 30 hours. Monday, Tuesday and Wednesday all 10 hour days. I DID IT! I survived. Although I slept for about 15 hours yesterday to recover. But that's ok. Point is I did it.
2. I cleared my foot MRI. Now we know there's no sign of RA damage in my hands or feet. YAY!
3. I went through 2 MRI's in one week. Today's was a brain MRI. I didn't mind though because I'm seriously ready for some answers about this muscle weakness. I hope to get some soon. (Because I'm a sucker like that and always hopeful.)
4. I have an appointment with the wheelchair sales rep. Apparently they come to your house, measure you and tell you all about your chair options. This is a whole confusing new world that I have many emotions about. Sadness, grief, excitement, happiness, relief. It's a giant emotional stew.
5. I'm in love with my new medical case manager. She's seriously the best. Like a medical fairy godmother. Now while I'm at work she's following up on things for me and cracking skulls, making things happen and forcing them to happen faster. Thank goodness!
6. My son quit his job of 5 years. That was a bit shocking and worrying. 
7. I had a epiphany to let things go that I can't control (see number 6.)
8. My muscle strength and muscle fatigue got a little worse this week.
9. I learned my job is taking everyone to Hawaii in January.
10. I went back to church.

To celebrate my 8th MRI I had my husband take this picture of me with the statue at our medical center that has become a home away from home. It was more of a joke as it was Saturday and no one was around. Again, humor is everything!

Even though I'll be getting a chair soon, I'm sure I'll still use Meg most of the time. What would I do without her? She's my BFF.

I did learn however that I can't get that beautiful turquoise "Fold and Go" chair that I had my eye on. My insurance doesn't contract with them. But I'm confident that whatever I get will be what was meant to be (and I'm sure I'll think of the perfect name when I see her.) And if I hate the color I read about some people taking their chairs into auto painters who paint it for them. Hmmmm...

Planning for the work week is KEY! This is my go-to lunch. Some gluten free seed heavy crackers, low fat Italian salami, grapes and boiled egg. My work also has snack cheese available for us to munch on, so that's a welcome addition. 

This week I was craving rice krispy treats. My husband made me some that used chocolate krispies. YUM! I enjoyed them all week. See!

Here I was enjoying it while doing paperwork. It tasted like love and kept me going through the day. 

This week I also modified my office a bit for safety. Like taping this throw rug down. Aside from needing it down for Meg and my office chair, I like my space to be the best ADA space it can be for others. I didn't want anyone to trip. Problem solved!

Going to church on Sunday was nice. I told my husband I enjoy having a dedicated time and space to sit with my thoughts and meditate. I often have helpful realizations about my life when I'm there and things I can do differently. This Sunday was no exception. 

Now I'm waiting on the brain MRI results and processing my feelings about the chair. And napping. There's never enough time for naps. 

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.

Rheumatoid Cachexia

I think I might have found what's going on with my muscle weakness. Last night I stumbled across something I've never heard of before called "Rheumatoid Cachexia."

The Cliff's Notes version of Rheumatoid Cachexia is that it is muscle wasting in people with RA. Sadly it's most common in people newly diagnosed with RA who are also overweight (ding ding ding!)

I found this blog on RA where the author says this about her experience:

"Almost overnight, I went from lifting 50 pound bags of concrete mix or fertilizer to being unable to hold onto a glass of water." 

Her story completely mirrors what I've been going through. One day I can work in my garden and the next I can barely shampoo my hair. Funny thing is my rheumatologist told me that muscle weakness doesn't go with RA. Did I mention how much I'm looking forward to getting a new rheumatologist? I have a message in to her about all of this but my expectations are very low. About as low as my current physical stamina.

(Me being a mermaid a few years back.
Testing out my underwater camera before we went to Iceland.)

I read that the best way to fight the cachexia is through "resistance exercise" and eating a lot of fish. Checkmark on the fish increase. We've been doing that for a few weeks eating it about every other day.

(Our delicious cod fish tacos that we had for dinner last night.
I like to steam my cod in my rice cooker. It's super easy and doesn't make the house hot.)

As for the "resistance workout" part, I have my first physical therapy session tomorrow. I also still belong to a gym that has a heated pool. I need to get back in it. Swimming and aqua aerobics is fantastic for health and mobility challenges because it's easy on the joints. I can get resistance and still keep it low impact. 

I also asked my PCP if we should re-do my back images since the last ones were done 17 months ago. He agreed and that's on order. More time in the "fun tube!" (My pet name for the MRI machine.) My husband and I joke that we need to make t-shirts for the medical center that we have to go to for all our scans and testing because we're there so often. I think that would be hilarious. He said we could have the name on the front and "Let's hope it's negative!" On the back.

Humor is so important.