2026 Has Been Rough

Last week my mom was in the hospital for her heart. She seems to have a medical crisis every year, but this one was by far the scariest. Well, that's not true. In the moment they are ALL terrifying. But this one was the closest to death I think she has come. I was sure she was going to die. I'm not ready for that yet. Not ready to lose her from my life forever. But will I ever be? I'm sure no.

This year has been crap for me medically as well.

 

 Eye infection in January. Starting the year off with a BANG.

 

Bad pink eye in February. Yes, it spread to the other eye. 

 

Urinary Tract Infection (UTI) in March. The fun just keeps coming.

Hives that pop up after compression, touching grass, hay or my dog's claws. Or just because.

 

My fingernail strangely lifting up off my nail bed (2 of them.)

In April I had another round of pink eye. But I didn't take any pictures this time. This will have to do...

Now it's May and I woke up with thrush yesterday. Fuck my life. 

This is a great reminder for me.

 

I had some labs done recently since I told my doctor I've been obviously have immune problems. 

She's referred me to a rheumatologist. I haven't seen one since 2018 (when I also had positive labs) and it wasn't a great experience. They thought I had Rheumatoid arthritis (RA), but it ended up being Mitochondrial Myopathy. I was put on medication that just made my symptoms much much worse (plaquenil) for RA. So needless to say I'm nervous about it.

 

Next week I'm seeing a neurologist for the second opinion about my "silent seizures." Does she agree that I have them?

 

Then comes the ENT to review treatments for my right year that likes to plug up on me for days on end when the pressure changes.

 

Also the gynecologist to talk about possible HRT to help my post-menopausal symptoms.

 

In the meantime I'm hoping to get my referral for Botox for migraines. I've been fighting with them about that since November. 

 

And people like to ask what I do with "all my free time." The answer is I don't have any. 

I feel like I don't even have enough to do art, When I'm not doing all this I'm trying to keep up with my precious pups, the house or with the people I love.  Of course I also spend a huge chunk of my day unconscious.

 

So yeah. 2026 has been kicking my butt.  

 

December Symptoms

I noticed it has been a very long time since I shared my symptoms here. Not since July to be exact. 

July, 2018 Symptoms Blog Post

May, 2018 Symptoms Blog Post

I also noticed that back in July I talk about using Meg, my rollator. She's become like another limb for me. It's really hard to imagine it has only been 5-6 months that I've been using her. Now I consider "only using Meg" to be a very good day. Anything more than a 1 store stop and I need more than just Meg.

So here's what I'm currently struggling with: 

•   Instability when walking in both legs. 


•   Gradual muscle fatigue when standing and walking in both legs.

•   After apx 420 steps extreme leg muscle fatigue. 


•   After apx 420 steps thigh muscles start shaking with muscle fatigue. 


•   After apx 420 steps legs muscles feel strained and mildly painful as if they had major exertion (like ran a marathon.) 


•   After apx 420 steps face and body break out in cold sweat (takes hours to recover from the feeling of major muscle exertion.) 


•   Frequent muscle cramps, twitches and spasms: arms, legs, arch of feet on the bottom, torso, right eye. 


•   Bottom of feet feel sore like I ran a marathon. Deep muscle ache. Especially in the morning and at night. 


•   Not able to sexually climax since muscle issues started. Muscles fatigue too quickly, even with pillows 
and support. 


•   Minor muscle weakness in right hand when compared to left. 


•   Arms fatigue (again, feel strained as if they had major exertion) when: brushing teeth, shampooing hair, cutting food, cooking, pushing a broom, minor activities like shopping. 


•   All muscles start off at normal strength, but fatigue with use much faster than typical. 


•   Constant back, neck and right shoulder pain. 


•   Constant stocking glove pattern neuropathy managed with Lyrica. Began 2015 post Latent TB Treatment. 


Treatment/Modifications: Rollator, transport wheelchair, electric wheelchair, reduction in house chores, rest in between activities, major reduction in physical activities, use electric scooter shopping carts, hot water bottle for back and neck, Ibuprophen PRN, warm showers, muscle rubs daily, not lifting more than 20lbs, home modifications like safety bars, cooking stool, etc. 


I also keep a running list of my testing flags and medical issues in the hopes it will help. I bring this list with me to every single doctors appointment that I have. Honestly, the doctors barely glance at it. They say something like "Well aren't you prepared" and then just put it down on the counter and proceed to ask questions that are answered on this sheet. -sigh-

I did have a bit of good news this week though. My neurologist messaged me to say that he feels my latest lab tests are matching his suspicion that I have Metabolic Myopathy and that's the source of my muscle weakness. I hope he's right and at my January 9th appointment we can begin some treatment. 2018 Has been a challenging year. 

What's New?

It must be December because suddenly I'm super busy. Trying to juggle my RA symptoms, viruses that keep sneaking up on me, still recovering from brain surgery and testing my ongoing muscle weakness issues. Oh yeah... AND I just started working full time. This past week I moved up for 30 hours to 40. But I'm happy to report that it went really great!

I found this pinecone on a walk around my office complex. 

Isn't nature amazing?

I love my job and feel blessed to be able to do what I do. This week went very fast and didn't feel like that much of a shift. Of course it helps when you have a supportive partner like I do. He did all the shopping, cooking and cleaning up this week. All I had to do was come home, eat and sleep. I'm always grateful for his support.

I've also been sleeping world's better recently. Much deeper with longer REM stages. I think the brain tumor was screwing with my sleep and I didn't even know it. And a good night's sleep can help like no other medicine.

Aside from all the love, support and great sleep I'm trying to be careful with my eating. My husband and I encourage each other to get protein in the morning. I also pack a lunch to eat healthy even at work. I never forget the snacks! My favorite is a hard boiled egg. It keeps me feeling full and gives me energy.

I did a little art project the other day using paper plates. One side is the "Me" that everyone sees. Happy, healthy, smiling. The other side is the "Me" that is much harder to spot and only my husband really sees. That's chronic illness, pain, sickness, exhaustion, sadness, frustration and all my symptoms.

I showed it to my husband and he said it made him sad. I understand. It's hard having two sides with you all of the time. Every time someone tells me "YOU LOOK SO GREAT! YOU LOOK SO HEALTHY!" I actually flinch. Because I know that they're only seeing what I present and none of the struggle and suffering. It's not all of me. Not even the most important part. It's just the mask I put on every day. Do you ever wish people could see what your chronic illness really looks like? The toll it really takes on your health, both physically and mentally? I know I do.

Long Awaited Answers

California has been buried in smoke these last few weeks. But despite the scary air quality I've been working 30 hours and attending my never-ending slew of medical appointments. Last week was the much anticipated EMG to test the electric nerve impulses in my arms and legs. Everything looked fine. But yesterday was the BIG appointment with the Chief of Staff of Neurology. The big cheese. The head honcho. The person with whom the buck stops. 

Well, we possibly have some answers as to what the heck is going on with my muscles and why I start off strong, but then get weaker and weaker. He thinks I might have a rare genetic condition called Metabolic Myopathy. Basically what it boils down to is the muscles don't use energy how they should and they progressively get weaker the more they are used. BINGO! It sounds like we may have a winner.

Of course this means more testing and more testing and more testing because there are different types of MM that require different treatments. So now we're doing all that and I won't go back to see this "Magic Man" till January. Drat! More waiting.

Charities known in Greek Mythology as the Three Graces

So now much like the Three Graces I'm trying to spend this time bringing "Brightness" (like Aglaia), "Good Cheer" (like Thalia) and "Joy" (like Euphrosyne) to myself, my family and my work. I'm relieved to possibly have an answer, but also a bit broody about the whole "more waiting, more testing" part. Of course a bit of jewelry never hurts to help me keep in good spirits.

In case you're keeping score, since 2015 I've now had:

1. Latent Tuberculosis
2. 9 months of awful treatment for TB that left me unable to do anything
3. A total hysterectomy
4. Stocking and glove pattern peripheral neuropathy
5. Rheumatoid Disease
6. Raynaud's Disease
7. Meningioma (benign brain tumor on my left temporal lobe)
8. Brain surgery
9. Severe Muscle Weakness (possibly Metabolic Myopathy) 

They say what doesn't kill you makes you stronger. 

I think I'm now a super hero!

My Hopes Are HIGH!

I got some awesome sauce news just now. (My doctor puts the "awesome" in the sauce.) 

"I received the wheelchair evaluation from physical therapy and will send you a copy in the mail. Please send me the information on the electric wheelchair and I will complete order.
Sincerely,
Your Awesome Doctor"

Ok, I might have added that signature. But it's not like I'm sharing his name with the world! Then you'll all want him and he'll be too booked to see me. I'm selfish like that. Don't like to share. Only child and all that jazz.

With any luck in a few months this little baby will be mine.

It's a "Fold and Go"

"But why this particular chair?" You may be asking. Well... The company is headed by a woman with RA who couldn't find a good electric chair to fit her needs, so she made one! Then turned it into a company. Let's start there. Also it's much lighter than other electric chairs (about 50 lbs) and folds down to fit in a regular car trunk. No van or hitch required. This baby is made for adventure! It can take inclines and bad weather like few other chairs can, especially in that price range.

I'm also not a... um... "petite" young thing and this chair is made for someone my size. YAY! Let the adventures begin!

Also in "big news this week" I ordered my first medical ID bracelet. It's something that's been in the back of my mind for a while, but my muscle weakness seemed to have taken a turn for the worse this week and that spurred me into action.

After a ton of searching I settled on this.

Pretty, but still looks like what it is. That was important to me.

Don't want to ERT to just think it's jewelry!

My job can be a bit risky. I work with a lot of different people and unpredictable situations can happen. Also I don't trust my own body right now AND I love to travel. So I thought it would be best to err on the side of caution and be prepared.

I know some people just use the Emergency ID Card on their smart phones. But honestly I don't think the ERT is going to be checking my phone while I'm laying unconscious from a bad fall or crisis. Nothing wrong with going old school when it comes to your health and treatment.

I had mine engraved with:

Muscle Weakness

Mobility Issues

RA/Asthma/PNP

ICE: husband's phone number

Did you know that ICE means "In Case of Emergency?" I saw it on a lot of medical sites and never knew what it meant. You're welcome. Also PNP means "Peripheral Neuropathy." I also had to look that up because the whole word wouldn't fit. 

Now if I tumble and conk my melon the responders will know why. Although nothing on my bracelet is life or death information like it is for some people, it's also important for anyone trying to help me to know if I'm in a situation where I can't speak for myself. 

My fingers are crossed for the wheelchair being approved with my insurance. It feels a bit like a message in a bottle that just got launched.

What Saves Me Spoons (and makes life easier!)

I've posted in the past about the things that make my day-to-day life a bit easier. But I'm always finding and trying new things, so I wanted to share my latest spoon savers.

#1) My Panasonic Wet/Dry electric shaver.

I used to use a typical razor in the shower and shave my 6'0 legs. The thought of that now just cracks me up! No way could I stand balanced in the shower and hand shave any part of me. Enter my wonderful, precious shaver. I use it dry about once or twice a week (despite my Italian heritage insisting I use it 5x a day at a minimum.) I use it while seated and as comfortable as I can be. You could however also use it with a shower chair wet in the shower. I just find for me that it works better when I'm dry (and let's face it, just showering is spoon sucking enough as it is!)

#2) Having super short "boy" hair that's my natural color.
I've had very short hair for a while now, but I keep getting it cut even shorter. The reason for that is 2 fold. 1 - My arms tire very quickly when raised up over my head (shampooing, conditioning, blow drying, styling) and having ultra short hair cuts that time WAY down. 2 - I'm growing out my color. Why? Although I love the look of dark hair (Yas Wonder Woman!) I hate the chemicals and maintenance. And again in comes the arm strength issue. I'm embracing my silver strands, but I hate the "two tone" look, so I keep getting it cut as short as I can bare. Which is pretty freaking short!

Me literally right now as I write this blog.

Yup... it's THAT short.

#3) Single serving and pre-made foods.

Yes, you pay more. And yeah... it's worth it! At least for me. I save a lot of spoons in the morning if instead of getting the gluten free bread out of the fridge, putting it in the toaster, finding a ripe avocado, cutting it up, spreading it on my toast, adding pepper flake and sea salt (because I'm fancy like that) I just open up (or even better have my husband open it for me) a small cup of my favorite yogurt. Add a banana and BINGO! Low spoon breakfast. Seriously anything I can do to save energy is worth it in the mornings. 

My favorite brand and flavor. 

If you haven't tried Icelandic yogurt, I highly recommend it!

#4) A HUGE capacity washer and dryer.

Less time back and forth = less energy used. I just bought a massive 5 cubic feet GE washer. I think my old one was 3.5? This one fits a whole basket in 1 load and was worth every penny. I wish someone would have told me that a big washer would save me energy and time. I would have traded my old one in sooner.

Mine is a GE 5-cu ft High Efficiency Washer.

You don't even have to clean the lint trap!

#5) Mobility Aides.

Although these are further down on the list they're the most important tools I have. All of them help me save major spoons, help with pain and allow me to do things I couldn't otherwise do. Hopefully soon I can add "electric wheelchair" to this list. But for now it's enough to get through my daily tasks.

Electric shopping carts

Transport wheelchair

Nordic Pole walking sticks

My #1 used tool the Rollator (with a seat)

#6) Adapting my house.

Making adaptations around my house has been fantastic. I have a small grab bar in the shower, sitting stool in the kitchen, a step stool with a handle (also in the kitchen), shampoo and soap dispensers in the bathroom and a tray for eating when we're sitting on the couch. I'm sure this list will get longer over time, but for now each of these changes has been hugely helpful. 

My cooking stool (with my old step stool)

My bathroom helpers

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.

When Your Legs Don't Work... Become a MERMAID!

Today I'm a mermaid

I've always loved mermaids, but since I started having my major muscle weakness and fatigue I've been even more captivated. I like to think of myself as a transformed mermaid whose human body is failing, but who can still swim just like she used to. That's a more comforting thought than a "chronically ill middle aged woman." I mean who wouldn't rather be a land-locked mermaid? Health is all about your frame of mind and your spirit.

So "Shirley" finally came and my husband and I took her out for a spin. He had the great idea of going to a local art gallery. The floors were flat and smooth and it was a big safe space to try out the transport chair for this first time. He did fantastic! Applause all around. Not one tip or bang. 

The #1 thing I noticed was that this was the first time I can remember in a very long time doing anything outside of the house that didn't leave me completely exhausted and needing a big nap. It was a strange sensation to have been all through the museum, but to NOT be totally out of spoons. So yeah, that was amazing and a huge relief.

Me & Shirley enjoying some underwater art.

You know... Cause I'm a mermaid!

So now in the back of my car I have my Nordic Poles (I don't know why I didn't name them? Maybe because I don't use them much.) Meg my Rollator and Shirley my transport wheelchair. I keep them in my car because I never know which I'll need when I'm out and I like to use the least assistive device that I can to keep my body strong. 

This Friday I'll be seeing my primary care doctor for my first official "wheelchair evaluation." I'm hoping to get an electric chair for when we're off on big adventures or on vacation. It would be better for inclines or off roading than a transport chair and it would also be something I can drive myself. I don't mind relying on my husband for smaller day-adventures, but for a longer vacation I'd need more independence. 

My wonderful doctor has also taken over my Lyrica Rx because I never did hear anything back from Neurology. That's more than a little frustrating. "Unacceptable" is the word my husband used and I have to agree. 

As much as I'm enjoying work that's also proving to be a struggle. Mornings are hard (even though I do my best to make them as easy as possible for myself) and I'm often out of spoons before I even leave the house. It's fatigue that's the hardest. The Cymbalta and Lyrica are doing a good job controlling my joint pain, gelling and neuropathy. Though I also take stretch breaks and do my best to keep as active as possible.

I'm thankful to still only be working 2 days a week because come Wednesday I need to rest most of the day. Too bad I can't just swim around all day looking for pearls like a REAL mermaid does!

Still Waiting for Help

I don't like not trusting people. I'd rather believe that everyone has the best of intentions and that people in the profession of helping others are really there to help me. But MAN doctors don't always make it easy!

I've been trying to get a hold of my neurologist for almost three weeks now. I want to increase my Lyrica dose and also let her know that I'm still having the scary muscle weakness. I've sent 4 messages to her now through our online medical chart and called. I even just asked to talk to the on-call neurologist this morning to try and get some help. But I haven't heard a peep back yet. 

At this point I'm just tired of waiting for help and am trying to go through my primary care doctor for the increased dose. My fingers are crossed that I'll hear back from him today.

I'm also still waiting on Shirley. I had really hoped I'd have her by today. Tomorrow is my husband's birthday and we're going out of town. I intentionally added a "rush" and paid extra for shipping to make sure I'd have her in time. Drat! Hopefully just going slow and using Meg will be enough to get me through the day. 

Thankfully I'm still only working 2 days a week. It has been exhausting, but I love it. I'm taking it as slow as I can and modifying my office to accomidate my needs. My office manager knows about my diagnosis and my needs and everyone has been very supportive. 

I've also been spoiling myself and letting my husband spoil me. The Cymbalta has really helped increase my energy, but now I risk doing too much. He's always reminding me to take it slow and guard my spoons. My doctor just increased my Cymbalta dose from 20mg to 30mg at my request. See neurologist! That's how it's done!

Hopefully the Lyrica will be resolved soon. In the meantime I'm still on 50mg 2x a day. My knee and feet x-rays didn't show any RA damage, so now it's onto the MRI portion of the evening (be sure to tip your waiters.) 

... And waiting on Shirley. I'll be sure to report back my thoughts on a transport chair as soon as I get her.