What Matters Most

Time is a finite resource. It's vital to make the most of it. And I don't mean I should be rushing to get as much done as possible. But I can use some help prioritizing what is most important in my life and spending my time there.

I'm feeling medical burnout. Even though I have an EEG scheduled for tomorrow to check into the whole "You're having silent seizures" news. This year I really don't want to prioritize medical care. Endless appointments where everyone says the same thing and it doesn't help much. 

I'm also feeling done with spending time with certain people. Like my in-laws. As much as I love them, I just don't want to spend time with them. I don't particularly enjoy their company and they don't have much to add to my life. In fact, they feel like work.

The only person who is work who gets to stay in my life is my son. That's it. I have no time or energy for anyone extra.

I spent a lot of time with friends this year. More than I can remember for ages. It was helpful to weed out who adds to my life and who doesn't. Everyone has hard times and good. I don't expect rainbows and sunshine constantly. But I want an overall positive reciprocal relationship with my friends.

So with all of this in mind. Here are my priorities for how to spend my time this year.

2026

1. Taking care of myself. Mentally and physically. Yoga, swimming, dancing, moving, sleeping. Doing what I need to do to feel good and be happy with myself.
   
   
2. Spending time with my mom, my dogs and my husband. Enjoying them and just living life together.
   
   
3. ART. Being committed to spending time on my art, whatever that looks like. Clay, doodles, painting, henna, crafting, drawing...
   
   
4. Live my values and drop people who don't share them. Animal welfare, feminist issues, slow fashion, commitment to people I love. All of these things matter a lot to me. I don't have time for people who live their lives blindly.
   
   

My mother just threw me the absolute best 53rd birthday party. It was women only and filled with such positive energy. I could tell we were all very thirsty for such an occasion. It was also an excellent way to start off a fresh new year. Showing me the potential of all of the women in my life and how powerful we all are together.

More of that this year please!

TWO CAKES!!!

What 53 looks like

What I take and why

I haven't talked about my medications in a few years. In fact I've only really talked about ALL of them twice.

March 2020 post

January 2020 post

Six years into this chronically ill life and here's what I'm taking and why.

 
TD means that I take it 3 times a day

Prescriptions

1. (LevoTHYROxine) Synthroid 125mcg AM (for hypothyroidism)

2. (Pregabalin) Lyrica 150mg TD (for neuropathy)

3. (Duloxetine) Cymbalta 20mg afternoon, 60 mg PM (for muscle pain)

4. (Lioresal) Baclofen 20 mg TD (for muscle spasms)

5. Botox for migraine, every 3 months

6. (Symmetrel) Amantadine 100mg AM & 2hrs later (for fatigue & muscle problems)

7. Aimovig auto injector 70mg, monthly (for migraine)

Supplements (Mito Cocktail) helps give me more energy & helps with muscle cramps & spasms

• COQ10 300mg TD (900mg total)

• L-Arginine 500mg AM

• Vit. D3 2,000IU AM

• Potassium Citrate 99mg TD

• Magnesium Citrate 420mg TD

• Fish Oil 1,000 mg Noon

• L-Lysine 1,000mg BD (for mouth sores)

• B Complex Noon (B1 1.2mg, B2 1.3mg, B3 16mg, B6 1.7mg, B5 5mg, Folate 680mcg, 1B12 1,500mcg, D-Biotin 400mcg)

PRN taken as needed 

• (Amerge) Naratriptan 2.5mg (take at onset of migraine - migraine cocktail)

• (Compazine) Prochlorperazine 10mg (take with Naratriptan - migraine cocktail)

• Acetaminophen 500mg x2 (for pain and w/ migraine cocktail)

• Albuterol Inhaler (asthma)

• Wixela inhaler (medium asthma)

• Albuterol Nebulizer (DME) (bad asthma)

• Baclofen 20 mg (if muscle spasms increase)

• Diclofenac 1% gel (muscle pain & nerve pain)

I've been taking most of these for so long now that it's hard to remember a time that I didn't. I did the math and by the time I'm 70. So from today to when I'm 70 years old I would have spent just over 300 hours filling my pillbox. Woah. That's a lot of my life. 12 1/2 days. Almost 2 whole weeks. Just filling my pillbox.

This is what I take just in the morning alone. I'm lucky that I don't have more problems swallowing pills. I'm also lucky that everything I take is helpful. I have it pretty dialed in at this point as far as dosing goes and where to find the best deals on my supplements. 

I think of my medication like my glasses. I can't function without them and my world is so much better with them. I'm grateful for my excellent medical team who helped me come up with the right things to take. 

Trying Something New

I will never stop trying new things and tweaking my existing treatments to try and be as pain free as possible. Yesterday I tried something brand new. "Dry Needling." 

The whole procedure was fast. It took about an hour from start to me leaving. I had "ultrasound guided dry needling" done to some problem areas in my back that are tight and painful. As I understand it the point is to dig the needle deep enough into the muscle a few times in order to start an immune response from the body. The body then sends healing resources to those muscles and they heal looser and improved than before.

Here's how my day went.

I woke up at 6AM to be ready for my 8AM appointment.
I wanted to be early enough to put on a little makeup and not be in a rush.

I gathered my paperwork that was sent to me ahead of time.

The nice lady who checked me in said it was the first time ever someone brough ALL their paperwork already completed with them. I believe it. I am THAT patient.

We waited in the lobby till 8:15. 

I miss crappy lobby magazines.

I was checked in and prepped for the procedure.

I brought my air pods and audio book in case I needed it.

Oh yeah! And my "fidget cube."

You can see it in my hand.
I'm throwing a chaka and ready to go!

Between stretching and showering I slept with my own personal guard on duty.

I woke up at 6PM to see this little bed bug peeking at me.

I was able to stay seated in my chair and just lean over a bedside table that was wheeled in front of me. I appreciated that. My blood pressure and heart rate were monitored the whole time. An ultrasound machine was used to make sure the needling was happening at the best muscle depth. Not to shallow and not too deep.

Some of my muscles spasmed during the process. I was told that was "good." Ok. When they did some spots on my neck and shoulders it didn't hurt at all really. As I anticipated it hurt when they did a bad spot on my lower right side of my back. I can compare it to when you're at the dentist with a sore spot and the hygienist pokes it just right to send you through the roof. It felt like that.

They used topical lidocaine on me and that's all. Again, like the dentist. They said if I was "unable to tolerate it" then they could have "injected something." I tolerated it. Honestly it wasn't any worse than my Botox for Migraines. It just had a longer after-pain that left me exhausted. Although I did get apple juice at the end. I don't get juice after Botox.

I'm supposed to go back in 6 weeks for another treatment. I will say my neck and shoulders, although still tender, do feel better. My lower back "spot" feels pissed at me and just as bad if not worse. I'll go back for another treatment and hope that it is helpful.

Let's talk about pain

Something I don't talk about is my pain. Not in my journals, here or in person. The last time I talked about pain specifically here was four years ago.

I do talk about it... LOUDLY with my medical team. However, even with them there's this sense of "Yes. You have pain. And? What do you think we can do about that?" Or at least that's what it feels like to me.

A lot of the time it feels futile to even broach the topic of pain. I know I have pain. Tons of it. But it's so subjective and hard to describe that I rarely do. How do I begin to talk about pain? There's the 1-10 scale.

This is the old-school traditional one that's useless.

My pain is usually a 6 all of the time.

Although this pain scale is better, it's still not perfect.

The last time I saw my muscular team I let them know ahead of time that pain was the number one thing I wanted to talk about. Even then I had to bring it back up at the end of my appointment. A quick medication review and she stated "It looks like you're already maxed out on meds. Have you tried acupuncture?" That's every doctor's answer to everything. Physical therapy and acupuncture. 

y'all make me tired!

Instead I asked for a referral to the "pain clinic" I'd heard about vaguely in the past. Like a hushed secret from someone. I had no idea what it meant, but it had the word "pain" in it so I figured it was at least worth a try.

Now here comes my least favorite part of all medicine.

Once at the mythical "pain clinic" I was asked "Where is your worst pain." "Well... my whole body! Let's start there!" On the meticulously filled out paperwork I clearly stated that I have 

• Burning pain
• Pins and needles
• Aches
• Soreness
• Pulling
• Throbbing
• Stabbing

All of these are from different parts of the body and I'm guessing have some different causes such as neuropathy, arthritis or my muscle disease. But I chose my back as the worst. She poked and prodded and yes... "elicited a pain response." That's medical jargon for "hurt me." Then came up with a plan to treat that specific pain.

Insert eye roll here.

I am not a single issue or body part. I am a whole body. A person. So why the medical field insists on treating individual body parts I will never know. It feels incredibly frustrating and antiquated.

I agreed to try a procedure called "dry needling" on my back. I'm hoping it helps with the chronic pain I have there. I guess the rest of my pain will have to watch on in horror. "Let this be a lesson to the rest of you!"

My second "pain clinic" appointment was with a social worker. It was interesting. He recommended some books to me and a support group. Unfortunately the group meets smack in the middle of my rest time. I told him if they start a morning group I'd be interested.

He also wants to meet with me over the computer to go through some CBT techniques for pain. I'm guessing I already know them all, but I will try to keep an open mind. 

I bought the book he recommended:
You Are Not Your Pain

The pain community is big into mindfulness.

I appreciated the reminder that it can be a tool. One that I stopped using a long time ago but am open to giving it another try.

So although I felt heard, it was also frustrating. Other than taking opiates, which I have zero interest in ever doing unless I'm actually dying. It feels like there's few options.

What helps my pain is:

• Distraction (eating, petting my dog...)
• Heat
• Gentle movement (stretching)
• Rest
• Massage (from my husband)
• Salonpas, Ibuprophen
• My Lyrica, Cymbalta, Amantadine & Baclofen

I'm also trying to talk about pain more and let my husband know when I'm in pain. I thought maybe like anxiety and depression, pain likes silence. So I'm working on that. 

Nothing Short of a Miracle

Hello!

Long time no see.

Why not?

Because I just didn't have the energy.

A few months ago just the simple act of showering or dressing for the day was leaving me exhausted. My "afternoon rest time" was more of a coma that would last 4-4 1/2 hours each day. I had just enough energy to bathe daily and try to spend time with people I loved. That's it. And things felt like they were just getting worse from there. I lived in fear of becoming bed bound.

I reached out to my muscular neurologist in a last "Hail Mary" plea. I let her know my fears and how bad things had become. She had one last suggestion that we hadn't tried yet. A new drug being used to treat muscular diseases (*off label) called Amantadine.

I started Amantadine about six weeks ago. The difference was immediate and drastic. I would call it a miracle. It immediately gave me more energy than I'd had in about five years. Not only that, but it helped decrease my vertigo symptoms as well. Something nothing else had been able to do, even Botox.

Then something even more fantastic happened. My "rest time" decreased to an average of two hours. I gained back 14 hours of my life per week. That is so amazing that I can't even express it. That's like all of the Harry Potter movies every week's worth of time.

Also what changed was that energy translated to more muscle strength. Even though it didn't help my muscles directly... having more energy meant I could accomplish more in a day, which often required muscles. Like cleaning, gardening, fixing my hair, putting on makeup. Things that before I had very little energy for I could now do back to back to back. Laundry, cooking, playing with my dog. You get the idea. All requiring muscle strength and stamina. So the more I did, the stronger my muscles became and I had a little more stamina each time.

And now the HUGE news.

Yesterday I did something I haven't done in five years.

I walked my dog around the block using just my cane.

Yup. It felt like I had just climbed Mt. Everest. I was elated. 

I called my husband right away and he was just as excited as I was and so proud of me for pushing myself.

So yes, I still have my muscle disease. I haven't been "cured." But I have a huge chunk of my life back. I hope to continue to build on this. I will gently push myself and listen close to my body. I'm still down 30lbs from where I was last year, which is another thing to be proud of. No easy accomplishment. Any of it. 

I'm proud that I asked for help. That I communicated what was going on with me to my medical team. That I listened and was always open and willing to try new things. And that I'm fortunate enough to have good medical care! I feel lucky, resilient and determined. 

(I received no incentive to write this. Amantadine is also called Gocavori. Here's more information about it if you're curious. I don't have Parkinson's, but it still helps me.)

*"Off-label" means the medication is being used in a manner not specified in the FDA's approved packaging label, or insert. Every prescription drug marketed in the U.S. carries an individual, FDA-approved label. This label is a written report that provides detailed instructions regarding the approved uses and doses, which are based on the results of clinical studies that the drug maker submitted to the FDA

Life Goes On

 Sometimes life can click along with nothing changing for years. Then suddenly I can have months, weeks, days where things change so fast it's hard to feel present.

I recently lost my precious Sweetie girl. She was my canine companion, my fur baby for 16 years. I feel lucky to have had her so long. I was also aware that super old age really sucks... even for animals. I would say she was "not her best self" for the last two years of her life. Joint pain and dementia had set in. We did what we could to keep her happy and comfortable, but in the end she didn't even want to be touched much.

From the earth we are given and to her we one day return.

In the end she went quickly, thanks to veterinary medicine and our fast actions. I am grateful for her precious soul to have been a part of my life.

Now my grandparents are also facing a difficult end. Death that comes swiftly in the night is a rare blessing. Usually fog and pain are there years and years before death finally comes for us. I for one will welcome Death like an old friend and relish the sweet release when it's my turn. Pain is for fighting. Not death. Death is there to set us free. I never understand people who want to fight death. Even as a child that made no sense to me. 

They are very far away from me, both in distance and in life but that doesn't stop my love for them.

And then there was joy!
I found a new little boy needing a home and love. This is our brand new Miniature Pinscher named Max.

Animals give us so much love and teach us so much about life. Like all of nature, we just have to pay attention to learn.

What has also been going well is the help I've been getting for my health. My migraine neurologist is still out on maternity leave, but I'm receiving my Botox every 3 months. I also just had my bi-annual check in with my muscular neurologist. That went well. I'm having a lot of pain and weakness in my neck so I'm getting fitted with a special neck brace to wear sometimes. They think that will help. I'm also getting new wheelchair tires and batteries soon.

I had my eyes checked and the optician is recommending I try "Prism" lenses. Apparently my eyes aren't tracking together and the prism helps that. It may also help my migraines.

Life is going quickly.

The holidays will be here soon. Thanksgiving, then Winter Solstice and Christmas. I feel like if I even blink I will miss them. I'm just trying to be mindful and enjoy each moment as they come. Being present in the present.

Vestibular Migraine Update

April 14th, 10 weeks ago now I had my first round of Botox to see if it would help my Vestibular Migraines. Here's what happened.

• Weeks 2-4 my headaches slowly faded in both duration and intensity.
• Week 6 the dizziness went away overnight. I felt the best I'd felt in a very long time.
• Week 9 the headaches came back. First just one normal feeling one, then a worse one that lasted 48hrs. Now they come on daily and I'm taking a Rizatriptan Benzoate ODT 10 mg tablet as soon as I feel it come on. That's been helpful.
• Week 10 the dizziness is back.

My next injection round is scheduled for July 14th. I asked if I REALLY have to wait that long or can I get it sooner. The answer as with all things in the US is my insurance will only pay for it every 90 days. F*#&!!!

Now I have a little less than three weeks to go and I'm feeling shitty. Although it is great to know just how effective the treatment is! I was also told that the more I have it the more effective it will be and the longer it should last.

My only side effect has been a strange muscle cramp I get sometimes in my forehead. I think that's just part of my myopathy because I'm constantly getting muscle cramps and spasms. But it looks and feels very strange. Fortunately it only lasts about a minute.

Don't lie. I look like a Klingon!
Normal is top. Muscle cramp is bottom. Really funky sensation.

I'm so grateful to have a team of doctors figure out what the heck is wrong with me. I never would have guessed all this was migraines. Now I'm counting the days till I can get 32 shots in my head again. 

The Curse is Lifted!

I have my days back

I'm thrilled to share that I FINALLY found something that keeps me awake all day long without any side effects. It's THIS! Orgain Organic Nutritional Shake.

This is the first one I bought and tried.

I have no idea why it works for me. 

My guess is that my body just doesn't absorb nutrients correctly to get them to my mitochondria. So I would be totally depleted of energy by the afternoon. But when I consume a lot of them in liquid form my body can somehow use it more efficiently than by eating. 

I'm so grateful that I found this product and that it works. Now I'll be looking around to see if I can find other things that work just as well but for less. Each drink costs me between $1.90 and $2.50 depending on the flavor. I use it as a meal replacement, so it's not as bad as it sounds. But since I'm unemployed right now I want to try and save us as much as I can. I'm also curious if something like a vitamin water would work just as well or if it has to be with protein too.

At first it felt really strange to have a full day back. Like I flew to another country where their days are twice as long. Now after about two weeks of it I'm getting more adjusted. It's wonderful! I still have to be careful not to do too many things at once. 

If I spread my activity out with resting a lot in between I feel much better. If I push myself I'll end up with shaking muscles and sweaty. Then it will take about an hour for that to stop. Ugh.

I have a check in with my muscular neurologist this week where I'll let her know about it. I want to discuss my increasing pain and muscle spasms with her. 

I haven't used the CBD/THC pen at all since I discovered the drink worked even better with no side effects. One pen cartridge is the same price as 12 drinks, but it's much better for my lungs. I also never drive with the pen and I can drive a little in town normally. That's a big thing to have to give up to stay awake if I used the pen instead.

I can't tell you what a relief it is to have a big chunk of my life back. I'm so grateful that I stumbled on this product. Fingers crossed that it keeps working!

I have zero affiliation with any product I ever talk about on my blog and received no incentive to write about it. 

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! 

Botox Trial Begins

Yesterday was my first round of 32 shots to see if it will help my migraine symptoms. Specifically I'm hoping to get relief from my constant dizziness, fatigue and headaches. The shots were all around the crown of my head and two in each shoulder. They stung a bit, but it wasn't awful (though I also have many tattoos.)

I was very concerned about the potential side effects listed on the Botox site, but my neurologist is a migraine specialist and does these all the time. She assured me that they have to list every side effect for every use, not just for migraines. The side effects sound scary... but I'm not having the shots in my chest so I should be fine. So far (24hrs later) I've had a headache, minor soreness, tenderness and stinging. 

No washing your hair or rubbing your head for 24hrs, then when you do wash, do it gently. I made the mistake of towel drying my hair after. Ouch! Don't do that next time. Lesson learned.

My doctor said it could work as fast as one week, or take as long as six months. I will go back in three months to do the whole thing all over again. 

I told my husband on the way home yesterday that I really admire my optimistic nature. Even after everything I've been through and only about 15% of things I try helping, I remain hopeful. Hopeful enough to get 32 pokes in the head, cross my fingers and wish it will help.

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