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.  

 

Extra Energy For LIFE!

When I was at my lowest point I only had energy for tiny tasks. Showering, feeding the dogs, minimal hobbies to keep my spirits up (like house plants) and medical appointments. Just the bare minimums. 

With the change in my diet and new medications and supplements I now have enough energy to broaden my life a bit. You know... to include other people and things. What I changed was:

• Results of genetic testing suggesting I have issues processing long-chain fatty acids.
• Now I eat a Vegetarian diet full of short-chain fatty acid foods.
• I take Amantadine 100mg, two pills in the morning. It helps with muscle pain, cramps and tremors.
• I recently added an amino acid called Nicotinamide Riboside 300mg. I take 2 in the morning. It helps with my energy in a massive way.
• I've been using the "Visible Pacing app" for people with chronic illness. It's like an anti-Fitbit for people with fatigue diseases. (not an endorsement)

These new tools have been very helpful in making sure I have a bit of extra energy. I now can spend time with my sisters and their families, with friends and making new memories.

Even away from my baseline I'm still doing better than I was.

"Are you going anywhere?"

I feel like I get this question constantly. From family, friends and strangers. "Are you guys going anywhere?" I can't say I've ever asked anyone this. It's like Veganism. If someone is going on a vacation... they'll tell you. They can't wait to tell you actually. They're bursting to tell you. That's why that question is most commonly followed up with "Oh. Well WE'RE GOING TO..."

Iceland, 2014

My husband and I used to love to travel far. The farther the better. We've been to the Canadian Rocky Mountains (twice. Banff and Whistler), Iceland, Ireland and Portugal. My husband has seen much more of the United States than I have, but I've seen more of California than he has. My company even took us to Hawaii back when I was working. 

Hawaii, 2019

These days however travel isn't on my radar. I love our little day trips and going a few hours away (especially to the ocean.) But travel is very hard for me. My vertigo, fatigue and muscle weakness make being in a car incredibly uncomfortable. I think the best I can compare it to is being super hung over and you just ran a marathon, now you're on a car ride as a passenger sitting on a balance ball instead of a seat. It feels like that.

Also interacting with other people is draining for me too. You have a lot of that on vacation. Interacting with strangers. So having a place to go to rest and re-charge is a must. I don't want to spend thousands of dollars and tons of time to travel internationally just to sleep in my hotel. That feels like a huge waste of money to me. 

Half Moon Bay, 2023

And then there's my house. Right now that's where I want to be putting our money. Back when I was healthy my husband and I would switch off. We'd take a vacation one year and do something to upgrade our house the next. Now it's more like going somewhere close and small and a small, continuous improvement on our home all at the same time. I love it.

I feel very grateful to have been all the places we went. I'm sure there are more things to be seen and discovered in the future as well. Just maybe not after a big airplane ride. And I have plenty of people in my life to tell me all about their adventures.

November Neurology

I saw my muscular neurologist last week. These appointments are always infrequent and stressful. It's stressful because I know it will involve a lot of testing. This one was no exception. For this visit I tried something new. I drew out an image of my body and what my current issues of concern are. I also made a list and sent it to her ahead of time.

They all shared that the drawing was very helpful. The resident suggested I start a comic strip with her as the main character. That gave me a chuckle.

The clinic had a new Pulmonologist who I really liked. She was very thorough and tested for things I hadn't been tested for before.

She said that I would benefit from a device called a "Cough Assist" and that my lung muscles were testing a little low. Given the lung issues I have that feels about right to me. I'm not too excited about a lung machine, but I'm trying to keep an open mind.

My neurologist chastised me for putting off my sleep study. I rolled my eyes and ordered it after our appointment. -sigh- 

The resident spent way more time with me than my neurologist. He asked me of all my pain what is the worst. I told him my lower back. They both agreed they want me to try physical therapy and if that doesn't help I'll go to the pain clinic for possible injections. I'm glad they listened and offered solutions.

All of this left me completely exhausted and my chest hurt for two days. 

The appointment reminded me that:

• No one knows what's going on better than me.
• No one knows what's going on if I don't tell them or show them.
• Only my symptoms can be controlled, not the cause.
• Doctors care about what's the WORST, not everything wrong.
• Some of my symptoms are scary, persistent and nothing can be done to help.
• Being sick is a lonely experience.

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! 

Fatigue Rescue?

I'm still recovering from a recent bladder infection. Those strike me from time to time and are common with wheelchair users, especially women. I have an issue with my bladder muscles not wanting to let go when I... um... GO. It's called "retention" and that also puts me at a higher risk for infection. Hey... Aren't those tulips beautiful! I thought we could all look at something pretty while talking about bodily functions.

When I'm sick my afternoon "naps" (or "curse" as I really think of it) eat up more and more of my day. Makes sense. We all need rest when we don't feel well, but I end up sleeping my life away. 

I'm excited at the prospect of something new that might help me. Epicatechin. As I said before my neurologist recommended I give it a try. It's an over the counter supplement derived from chocolate, so why not?

This is what I went with.I've had three doses now and honestly can feel a difference. I took my first dose last night and indeed it did keep me awake! I took another dose this morning with a banana and another with lunch. I feel much less tired than I normally do at this time of day. Like how I used to feel if I ate some chocolate covered espresso beans. The thought of having found something that can possibly wipe out my 2-4hr nap every day for $38.95 a month makes me excited. I hope, hope, hope this stuff really does help and I don't just acclimate to it. 

Painsomnia

Painsomnia is when you're in too much pain to sleep. I've had a nasty head cold lately (and a beauty of a cold sore) and when I'm sick my body pain level usually skyrockets. The last few nights I've been in bed trying everything I can to get to sleep. Night time cold medicine, Ibuprofen PM... nothing seems to help.

When my pain gets this bad I usually just try and distract myself into a state of ultra sleepiness by messing around on my iPhone. Pinterest is my go-to. I found myself doing some last minute Christmas shopping last night. "Design Home" is my favorite app. I've played it for years. I find it relaxing and a fun way to unwind. 

If I'm getting busy brain or feeling worried looking at animal "pins" or humor is helpful. Baby animals cure everything. 

My sweet girl is also helpful. 

I can't force sleep. She will come when she's ready. Bottom line is I'm lucky to not have to get up and go to work on only a few hours sleep. It really screws me up. If I'm up late with painsomnia I feel super dizzy and foggy headed the next day. I will also likely have a migraine. 

I'm lucky not to have this happen every night, but it does seem to happen back to back nights when it does come up. Being sick with a bug is almost always a guarantee that it will happen. It also seriously affects my mood. Bah Humbug!

Sick on top of Sick

We've had some hot sick-on-sick action going down at our house. First my husband came down with the flu. "I hurt all over" my husband bemoaned to me while I shot him incredulous looks. "Welcome to my world" is my go to retort at times like this. Of course I don't want my husband to be sick, but the two days that only HE was sick gave me some false hope that maybe I could dodge it this time? Maybe only he'd be sick? Nope.

"But tell us! What's it like being sick when you already have a chronic illness?" I'm sure that's what you're wondering? On the edge of your seat to hear? Well, let me share a little. I suddenly gain the super power to be able to sleep ALL day and ALL night! Isn't that amazing? I do nothing, but am also hungry all the time. But I'm not just hungry, I'm starving AND nothing sounds good to eat. Are we having fun yet? "Tell us more!" You may be demanding. Very well. My skin is so sensitive and every cell in pain that anything I put on hurts. It doesn't matter if it's the softest pajama or fuzzy blanket, it hurts. I want a nice warm shower, but also don't want the water pressure on my skin. In short, I transform from a mature adult woman to a cranky, fussy infant who can not be soothed. What fun!

My body already hurts all the time. Every second of every day I have pain. It's just how severe that pain is and to what degree it distracts/consumes me that changes. When I'm sick, it consumes me. I hate it. In short (to quote my favorite meme because it's so true) "Everything hurts and I'm dying!"

Most Important Part

I'd like you to meet the most important part of my life. My husband of 23 years, my partner for 25 years, the father of my son and the person I couldn't do without. 

I think most people imagine their husband/wife/partner to be a very important part of their life (at least I hope so.) But I know that mine is even more unique.

Other than making me laugh all the time (and laughter really is great medicine), he has supported our family financially, comes with me to every medical appointment and procedure that he can, rubs my back every single night and reads me a story out loud every single night. This was once a loving night time gesture and a fun way to spend time together that didn't involve a screen. But over the past 3 years it has become much more than that to me. It's the highlight of my day every day and the main reason I get any sleep at all. What a guy! Of course he does much more than that, but for the sake of space I'll keep it more focused.

Having a companion in life is the key to good health. Isolation does horrible things to both your body and your mind and any burden is much lighter when shared. Even on my worst day I feel my pain and mood lighten when my husband comes home. 

My superhero of a husband also tends to see the good everywhere. The good in people, in intentions, in situations. He is incredibly trusting, kind and generous. I tend to be much more cautious about who I trust and vigilant with people. He brings out the best in me. 

He's a lot like another man I adore, Mr. Rogers. He's calm and patient. Two things I have to work very hard to be in any way. You'd love to have him as a neighbor. 

I have no idea where the future will take us both. But I know that I can tackle anything that comes my way with him next to me. I also know that I can count on him and that anything I share with him will be heard and taken seriously. I think that makes me very lucky!

Pleasure to meet you!

Writing is helpful. Sharing stories is even more helpful. I'm typically a "holder of other people's stories" both professionally and personally, but I feel it's very healing to get your own story out in the world.

So, it's a pleasure to meet you! I'm "Atypical Dandelion." Let me explain. If I hear another doctor use the word "atypical" to describe me or my symptoms I'm going to snap. So rather than do something rash (or potentially illegal) I'm claiming that word. YES! I'm atypical. But that doesn't have to mean anything negative. I'm unique, distinctive, un-definable and defy all the odds. I'm "atypical." 

The "dandelion" stands for health, persistence, perseverance and fragility. I'm all those things too! I'm on a quest for health. I've learned to be ridiculously persistent. But at times I can run out of spoons and be fragile. Did you know that dandelions are super good for you? It's true! The root, flower and leaf are all very high in nutrients. Why it's considered a "weed" I'll never know. I find them beautiful and symbolic. They grow and thrive in the worst of conditions (much like a lotus flower) and carry your wish on the wind. If you ask me they're magical. 

I'm on a quest to heal myself. I'd like to trust others to heal me too, but so far that isn't working out so well. After my treatment for Latent TB 3 years ago my body just decided not to be doing so well. I'm still trying to get a solid diagnosis, but the best I can tell I have something autoimmune happening, a chemical sensitivity and gluten intolerance (not Celiac Disease.) 

(Good morning breakfast!)

After my rheumatologist appointment last week I was left with the helpful information of "we may never know exactly what's going on with you and we might just have to settle for a best guess." I found that incredibly depressing to hear. Of course she also wants to chuck more drugs at me without knowing exactly what's wrong. Maybe the 7 vials of blood I gave and the MRI I'll have Thursday for my hands will reveal something. I'm ever hopeful. After crying in the bathroom at the medical center and feeling extremely angry and un-heard I decided it was up to me to try and help myself. 

Three months ago out of sheer desperation to find something to help ease the neuropathy in my arms and legs I decided to test out a gluten free diet. I read that sometimes people who have been on long, high doses of antibiotics (like I was for the Latent TB) can develop a gluten intolerance. Right away I noticed a big improvement and that bolstered my confidence.

Although I don't feel like I can really "heal myself 100%" I do feel like what I eat and what I put on my body can seriously affect my health. So I came up with what I called "Plan Ass Kick." 

Plan Ass Kick is Underway!
The pink nail polish was a required mood booster.

Ditto for the pussywillows.

Plan ass kick is a combination of foods to avoid, supplements and foods to indulge in. I'm trying to avoid sugar (a known inflammation causer) and eating a lot of fresh foods. I'm making my own juice every morning with ginger, turmeric, kale, spinach, carrots and apples. I'm getting lots of rest and trying to avoid stress. I purged my beauty products of anything with chemicals in it. I'm using crystal deodorant and "mud" toothpaste. I gave Oil of Olay the kiss off and use vitamin E oil instead. Get the picture?

Its been 6 days since I started PAK. Maybe my neuropathy is a tiny bit better, but that's all I've noticed. But that's where patience comes in. Some medications for Rheumatoid Arthritis (the closest thing my Rheumatologist says she thinks I have) can take up to 6 months to start working. 6 MONTHS!!! So I think I can give it longer than six days.

My symptoms are too long to list. But my major ones are the neuropathy, dizziness, dry mouth, sleep problems, occasional brain fog, fatigue, chronic joint pain and loss of grip strength in both hands (mostly my right though). Cutting out gluten got rid of every GI symptom I was having, reduced my swelling and improved the joint pain. It has been helpful enough to make me go out of my way to avoid gluten as much as I can.

It's really scary not knowing what's going on in my own body. It's very frustrating when the specialists don't know either. It's incredibly exhausting trying to find answers, fight depression and communicate my needs to people who love me. Spoons are hard to come by and I'm hoping this blog will be a tool to help me hold onto some of them.