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.  

 

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.

Current Symptoms - July

Back at the end of May I shared this post about how I keep a "running tab" of my current symptoms to share with all my medical providers. I've only been met with positivity when I come prepared and organized like this. That said, I do try and keep it to a 1 page sheet. That's becoming more challenging. 

I have an appointment with my primary care doctor next Friday and I'm seeing my new rheumatologist the Friday after that. And.... Huge news... My insurance referral came through yesterday for my spinal tap. That's coming up next Monday. Hopefully they'll have the results hot off the presses for my new rheumatologist! YAY! Things are starting to come together. That also gives me a full week to recover from the procedure before I start my new job. 

With these important appointments in mind I did a little tweaking to my list. Previously I had two categories on a Word document. 
1) What I've Tried 
2) Current Symptoms 

Now I broke that into three categories. 
1) What I've Tried 
2) Currently Using 
3) Current Symptoms 

All of these sections have grown since May. Here are my current symptoms:

Current Symptoms:

• Reduced overall muscle strength, especially right side of body
• General Fatigue (feel exhausted most of the time, especially after activity)
• Muscle shaking (arms & legs) after short exertion (like 15 minutes of light gardening) Stops with rest after about an hour
• Inability to have an orgasm (muscles can’t sustain contraction for period of time.)
• Joint pain in feet (especially right foot, ankle and 4 smaller toes. Right ankle & toe swelling.), in both hands (especially right hand & fingers. Hands feel hot) lower back, mid back, neck (that sometimes wakes me during the night), both knees, right hip and right shoulder pain
• Muscle spasms (thighs, calves, arms and stomach mostly)
• Dizziness (especially with movement)
• Peripheral neuropathy symptoms (especially in legs, arms and lips) numbness, tingling, feels like nerves vibrating or full of bees (currently taking Lyrica for this.)
• Both hands swollen in the morning (Sleeping in compression gloves helps.)
• Feeling of fullness, pressure in right ear (ETD)
• Painful body joint gelling in the morning and after sitting
• Forearm burn and itching (nerve itch? Ibuprofen helps)
• Increase temperature sensitivity in forearms, hands, shins & feet
• Frequent urination, especially at night (0-8 x per night. Improved temporarily with Lyrica.)
• Dry mouth, especially at night
• Ulcers on tongue & roof of mouth (Responds to salt water rinses)
• Sore throat off and on (like I feel like I’m getting sick, but I don’t)
• Cracking of joints (neck, hands, feet, back, knees)
• Occasional “brain fog” (like I have the flu)
• Toes on right foot appear to be “drifting” away from big toe & swollen
• Ankle swelling on right foot after minor activity

My jacked up feet after 15 minutes of light gardening.
My toes and right ankle puffed right up.
Yes, it hurt.

The spinal tap will hopefully help sort out which of these is being caused by the RA and which (if any) are from something else. That's why it's so important. It is possible that all of this is from RA. Or it could be comorbid with MS, ALS, or something else completely. 

My muscle weakness is still progressing. It's even affecting me sexually now, which is a huge issue. I'm hopeful that my new rheumatologist can find a drug that will help and I can regain some strength and mobility.

In the meantime, Meg will be my new "adventure buddy" and I'll just do what I can, for as long as I can.

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.

Current Symptoms

Before each doctors appointment I make a list of my current symptoms. For a new specialist I also include a basic timeline and break the symptoms up into "chronic or occasional." I have an appointment with my primary care doctor and just finished a list for him. This time I'm including something new. A list of things that I've tried to help ease the pain and calm inflammation on my own. I'm doing this because sometimes I feel like doctors think patients aren't proactive or are just looking for a quick fix. I want to really hammer home how long I've had this, how severely it affects me and that I'm not just waiting for someone else to "fix" it for me. Also so we don't waste time talking about/suggesting things I've already tried.

Tried: (for pain & inflammation)

Plaquenil (400mg – stopped taking from side effects)

Gabapentin (stopped taking from side effects)

800mg Ibuprofen 2x a day

1,300 mg Acetaminophen 2x a day

Salonpas (topical pain patch):

            Camphor 3.1% (Topical analgesic)

            Menthol 6.0% (Topical analgesic)

            Methyl salicylate 10.0% (Topical analgesic)

CBD topical stick

Charlotte’s Webb CBD supplement (no THC)

TENS machine

Acupuncture

Supplements (Borage, magnesium B-12, E, fish oil)

Ben Gay and all the other topical ointments for arthritis & joint pain.

Light exercise/stretching

Diet changes

            (cut out gluten, sugar, dairy, etc.
            *Improvement with no gluten since 12/2017)

Current Symptoms:

·      Joint pain in feet (especially right foot, ankle and 4 smaller toes. Right ankle & toe swelling.)

·      Joint pain in both hands (especially right hand & fingers. Hands feel hot)

·      Joint pain in lower back

·      Joint pain in upper neck

·      Right shoulder pain

·      Pain in back, shoulder, hands and neck that wakes me up in the night

·      Dizziness (especially in the morning)

·      Feeling of fullness, pressure in right ear

·      Body joint gelling in the morning and after sitting

·      Frequent urination, especially at night.

·      Dry mouth, especially at night.

·      Sore throat off and on (like I feel like I’m getting sick, but I don’t)

·      Fatigue (feel exhausted most of the time, especially after activity)

·      Easy muscle fatigue in arms, legs and bottoms of feet (the front pads) from minor activity (like bathing or walking across a parking lot.)

·      Peripheral neuropathy symptoms (especially in legs, arms and lips)

·      Both hands swollen in the morning. Sleeping in compression gloves helps.

·      Pain in both knees, especially after activity (knees feel hot)

·      Cracking of joints (neck, right hand, right foot, both knees)

Have you ever had that conversation with someone? Even your doctor? "Have you tried..." "YES!!! I've tried everything!!!" That's what I'm trying to avoid.

I don't think any of my symptoms are unique. In fact I think the majority would fall into either "neuropathy" or "rheumatoid arthritis" (or as my doctor says, "rheumatoid disease.") I'm not a special snowflake in the land of symptoms. So why each neurologist and rheumatologist stammers that I'm so "A-Typical" is a big mystery to me.

I'm hoping that my appointment Thursday will bring a fresh referral to a NEW rheumatologist and suggestion for addressing the chronic inflammation (because the 800mg Ibuprofen is doing zilch.)

Food, Love and Drugs

Friday I saw my regular primary care doctor about the muscle weakness and Plaquenil. We decided that I was going to stop taking it and come back to see him in a week. He's also getting me a new rheumatologist. YAY! I'm thrilled. In the meantime he'll find me some anti-inflammatory medication that will be more helpful than the 800mg Ibuprofen I have been taking. Again... YAY!

This Thursday is also my eye check with the Ophthalmologist. I'm keeping that appointment just to make sure everything's ok and the small time I was on the Plaquenil didn't do any damage (seeing as I did have massive sun sensitivity and retinal after-burn issues.)

My favorite Kombucha.

It's expensive, so I don't get it very often.

I must be part fairy because I love "floral" food and drinks.

In the meantime I'm trying to eat well and take care of myself. I'm also learning I stink at guessing how many calories are in something. Thank goodness for technology and apps so I don't have to guess.

This was last night's dinner. Care to guess how many calories? It's a turkey burger on a gluten free bun (that was awful and I didn't eat), low fat refried bean dip with 1/4 cup shredded Mexican cheese blend and 1 tbsp sour cream. Those are organic corn tortilla chips, about 1 cup. Then we have cast iron skillet sautéed Shishito peppers. Oh yeah, there's also about 1/4 cup cheese curds on the turkey burger patty.

Honestly I would have guessed about 500 calories (without the bun.) Actually it was 900 calories. I would have been off by almost half!

But then my breakfast this morning I would have guessed wrong the other way. I would have thought about 900 calories for what you see here. Nope! More like 300. See!? This is hard!

This wouldn't be a typical breakfast for me. I consider it a "special Sunday brunch" meal. But really it has about the same amount of calories as 2 pieces of avocado toast. I would never have thought that.

And that's why I'm trying to pay close attention and really track my food. Because apparently I have a lot to learn.

Love/Hate Plaquenil

It has only been 2 days since I went down from 400mg of Plaquenil to 200. I was taking it twice a day, now I just take one a night. I stopped taking it because of the increasing muscle weakness in my arms and legs. It was making every day things like showering, dressing, walking a real challenge. I wanted to be sure that it was the Plaquenil that was causing this progression before my neurology appointment next month. 

But...

After just 2 days of a reduced dose I've noticed a huge difference:
- The eustachian tube dysfunction (ETD) I've struggled with in my right ear for years now was back this morning. Feeling full, a little blocked and making me dizzy.

- I couldn't sleep because 1) I felt wired/awake 2) the serious pain in my back (especially my lower back.)

- The neuropathy in my hands increased, especially last night.

- My joints ache continually again (not just from "gelling" when I get up.)

- Did I mention the dizziness? That sucks.

- I'm much more tired today. Could be from not sleeping well though.

My rheumatologist still hasn't gotten back to me, so this morning I messaged my doctor. I was very frank and asked if I should go back to 400mg, try another drug or see another rheumatologist. I may try and call her today as well seeing as I feel horrid.

This just adds to that looming feeling of isolation and like I'm in this with very minimal medical oversight. I keep reading how "early treatment and intervention is KEY" and then the medical "experts" really aren't working with me. It's very frustrating. Every minute I'm second guessing myself and feeling like I should just go back up to 400. But the muscle fatigue really was a big problem and I DO want to know if it was being caused by the Plaquenil. 

I went to the store this morning, which was great. Then I stared at the bags in my car and just wanted to cry at the thought of brining them inside PLUS putting all the food away. I sucked it up and did it, but it was hard. 

I HATE that things like grocery shopping are now hard. I feel angry, sad, frustrated, pissed at my doctors and hostile to my traitorous body. I'll feel more hopeful tomorrow. But today is for sulking under a blanket.

Muscle Weakness on Plaquenil

The muscle weakness I've been having since the beginning of May seems to be getting much worse. It's in my arms and legs. It has gotten to the point where my muscles are sore and tired from the most basic things like getting dressed and washing my hair.

I messaged my rheumatologist today saying that I want to stop the Plaquenil (400mg) so I can maybe see if that's the cause, or if it's something neurological instead. I have a month till my neurologist appointment. In my mind I'll stop the Plaquenil and quickly tell that it was the cause. But if I stop and it's still there when I see the neurologist, I can then talk about possible other causes. That's a scary thought.

I never thought of myself as a "scared" or "fearful" person till all of this. It's not death that scares me. Death has never scared me. It's the feeling of "how bad is it going to get?" Fear of the unknown. Every day, every week, every month seems to bring so many changes that I'm constantly playing catch up. If even I don't know what's going on, how can anyone else? How can my doctors help or my partner continue to give me endless support? I think that's where the heart of the fear is. Loneliness and isolation.

Some thoughts from my journal last week.

But before I get too gloomy, I have to share that with the help of my husband I was able to get out and do some gardening this weekend. HORRAY!

What got planted!

I was a little late this year, but I'm hoping these little seeds will do their magic and we'll have some delicious veg from the garden by late summer. I was so excited to get out and get it done. 

I'm hoping to hear back from my rheumatologist soon. For now it's more of the "hurry up and wait" that has become my "new normal."

Vindication

I'm reading through my new copy of "Living with Rheumatoid Arthritis" and I come across this...

It says:

"In fact, many people with RA say that they just don't feel well."

This was mind blowing to me. Ever since my treatment for Latent TB that's exactly how I wanted to describe it. That I "just don't feel well." That something is wrong. The book goes on to discuss how RA is thought to be genetic in base, but that it's "triggered" by something environmental like a virus or bacteria. Then it goes on the specifically name TB as a potential trigger.

My mind was blown.

Vindication right there. I'd been telling my doctor and neurologist for over a year that something was wrong. That maybe I should see a rheumatologist. That I was having "stocking and glove pattern neuropathy." The neurologist, rheumatologist and my doctor told me that you don't have neuropathy in RA, but this book clearly says that you can. In fact the "stocking and glove pattern" is the most common type of neuropathy that goes along with RA. VINDICATION!

I can't begin to explain what a relief it was to read all of that. That a serious illness (like Latent TB) can trigger RA. That neuropathy can happen. That RA isn't always perfectly symmetrical (my right side is far more affected then my left.) All of these things in black and white. 

So now I have a NEW neurologist that I'm seeing at the end of June. Though the DMARD I'm on is really helping the neuropathy. It used to wake me up every single night, typically many times. Now I can sleep through the whole night, which I haven't done in about four years. I also spoke with my primary care doctor about getting a new rheumatologist. 

I was right and these specialists were wrong. I'm so glad I stuck with it and refused to back down. I was determined to solve what was going on with my body and now I have some answers. Best of all I have a treatment that's helping.

So trust your gut. If you think something's wrong, don't rest till you get answers. Don't let it consume your life, but also don't just let it go. This is a tricky balance, but one that's incredibly worth it.

Feelings About New RA Diagnosis

Today my rheumatologist called me at work to let me know that with the combination of my recent MRI on my right hand the bloodwork she’s confident in saying that I have rheumatoid arthritis and she wants me to start taking medication for it right away.

I’m going to be starting down the path of DMARDS (anti-rheumatic drugs) that “suppress the immune system.” If that sounds serious, it’s because it is. But from what I’ve read it’s much more serious to not take medical action. I’m picking up my prescription for Plaquenil (Hydroxychloroquine) tonight on my way home from work.

She also said she doesn’t think the RA is what’s causing the neuropathy and that’s likely something else entirely. She feels we caught the RA early. That’s hopeful.

After the call I stepped outside to visit some dandelions.

So now the plan is to keep the appointment with the neurologist then go back to the rheumatologist after seeing that person to check in on how the drugs are going and if the neurologist added anything or found anything new.

I’m feeling many many things.
A sense of irony that I got the call on Friday the 13^th. Relieved to finally have a diagnosis and some sense of hope with treatment. Feeling this is unfair that I have to go through something else after having Latent TB just a few short years ago. Happy to have someone trying to alleviate the pain of what I’m going through. Lucky that she got back to me and that I even have access to medical care in the first place. Angry that it feels like this trip isn’t over yet and there’s still more to find out. Grateful to have such a supportive partner who “gets me” and is there for me. Scared about the side effects with my new job. I’m feeling all of these things all at the same time.

Overall I just feel like FINALLY one piece of the puzzle plunked into place. I was hoping that would be the whole puzzle, but at least I have that one f*@&ing piece to cling to. Some of what’s going on is RA and it can be treated. Not cured, but treated. But I am scared that the treatment will be worse than the condition. Everything I’ve read tells me “no.” That “treatment isn’t optional.” But I’m not a trusting person by nature.

I still have so many questions. Will I get any side effects? How will this medication change me? Will my RA get worse even with the medication? (many people are on more than just 1 thing.) How many drugs will I end up needing to take? What if the rheumatologist is right and there’s something else going on along with the RA? What if that’s worse?

I "needed" a treat after all the stress of the day.
Yes, that is a sport sock on my cup.

Don't judge me. It works.

Want to know what my biggest fear is? My #1 biggest fear is that I've spent the last 10 years learning, working and training for a career that I won't be able to do. What if "brain fog" takes over and I can't work? What if I'm too exhausted to be able to work very much? So yes, I have fears about those things. But I also remind myself that I live in a time with wonderful assistive technology. I also have a very non-physical job. It doesn't require me to be physical at all actually. So as long as I can talk and think, I'm pretty golden. You can't say that about many careers. 

I'm also fiercely independent, tenacious, persistent and resilient. All the things you need to be to do battle with any form of chronic illness. What chance do fears have against Ninja skills like that?