Communication is Key

It's common for me to forget that I'm disabled. I'm always in pain, but that has just become a part of my day-to-day life. The intensity of it will vary, but not the pain itself. So I actually forget that most people don't have ANY pain unless they hurt themselves.

However, I pretend to be "normal" all of the time. A term the neurodivergent community has coined as "masking." I am a huge masker. This is why communication is so key.

Beautiful coffee from my mama.

Mindfulness activities like a body scan through my day are massively helpful. I tend to dissociate from my body. Anyone would living with constant pain. But that's not actually useful or helpful. I also have a severely delayed pain response. Typically I can do a hard activity like intense gardening and then not feel it or notice till about 12 hours later. This makes it a big challenge to know my limit.

Mental energy is different for me. I can feel my brain battery actively going down. Draining minute by minute. So mental tasks can become difficult for me quickly. 

Since all of these things are hard for me to realize, I know that people around me, even those who are mad about me, won't know how I'm feeling unless I tell them.

I am still disabled. My dis-ease impacts my daily life and ability to function in a pretty major way. I have to monitor and pace myself in ways no healthy person does. I also struggle with constant pain in levels that would send your average white man into screaming fits on the floor. 

The receptionist at my pain clinic asked me over the phone yesterday what my pain was at between 1-10. It was a good day so I answered honestly about a 6. Reminder, that was a GOOD DAY. I'd say I average about a 7. I message my doctor and make an appointment if it's a 10. I've never been to the ER for pain.

I tend to share with my mother much more than my husband. He's an abilist who tends to be a bit dismissive. I think that's a reflex most people have. To instantly compare their experience with what they're hearing. I'm guilty of it too. It builds relatability. And frankly, he's not the best listener at times.

So it becomes very important for me to clearly communicate what's going on in my body frequently. Not ad nauseum, but frequently enough to get the point across. I'M DISABLED! I can't/shouldn't do that. I need help. I'm exhausted. I've hit my limit. I need a nap. My pain is really bad right now. Etc...

Not how my nails looked a month ago.

I've started having problems with my fingernails. One of them is lifting off the nail bed. All of them have become thin and brittle, splitting painfully and breaking even though I keep them short. Copilot told me that it is likely from my Mitochondrial Myopathy and could also be an Iron deficiency. I showed my husband and talked about it with him. Something I likely wouldn't have done in the past.

I also have a hemorrhoid right now due to my chronic constipation (a side effect from my pain medication.) Sorry for the TMI, but it's health related. I've never had one before, despite my fears. I was shocked I didn't have one much sooner to be honest. When I do finally go I'm like an adult rabbit. Hahahah.

And let's not even get into the massive stye I just struggled with. 

Point is there's always something going on with my body. Sometimes you can see it. Often you cannot. That's why communication from me is key if I'm to have the real kind of relationships that make life so fantastic.

A thoughtful gift from a good friend makes my day.

Always Trying Something New

I'm always open to trying new things to help me function better. The best discovery I've made recently is my "Visible" device. I did a lot of research before buying it. I read many reviews and watched videos. You wear it on your upper arm. I call it the "Anti-Fit Bit." The whole point of it is to help you track your efforts and energy during the day so that you don't over-do it. 

Ok, so I am the reigning QUEEN of over-doing it. Seriously. I've sent my body into rhabdo more than once. Which is awful. So when I first saw that there was a device to help me pace myself better I thought it might be a good fit for me. It is.

It monitors my heart beat and heart rate variability. HRV for short. I get notifications if my heart rate stays up high for more than 5 minutes. I can set how long. Then it suggests I take a break from what I'm doing so I don't expend so much energy.

Interestingly enough my heart rate goes sky high every time I shower. I always knew that showering left me tired. Now I know why. 

Here's what the app looks like on my phone. Every morning it takes a measurement of my heart rate and my HRV. Then it gives me a score. The score is called "Morning Stability" and it's a guide for how your energy might be on that day. You can get a 1 to 5. The higher the number, the more energy you have. I'm typically a 3. I've gotten a 4 a few times, but never a 5.

Once a month it asks a series of questions related to your health, what you're able to do and what you can't do. How hard things are for you, that type of information. Then it gives you a "Functional Capacity" score. This number reflects my ability to carry out day-to-day activities. 

A "Healthy normal person" is typically a 6. Here's mine for May. A 3.2

But here's what REALLY gets my heart racing...

Besides wearing my "Visible" device and trying to pace myself better, I also signed us up for Hungry Root. It's a healthy meal plan and food delivery company. They send me a weekly box with ingredients and recipes to make. We've only had it 1 week, but I already love it. 

It means giving up a lot of freedom with my food. The decisions are all made for me. At first I found this a bit scary. But now I like it. I can program it for what kind of food I want, how many meals I want, how much I want to cook and other things. Right now my box is set for gluten free, vegetarian meals. I'm getting some breakfast, lunch and mostly dinner. I just added fruit to my next order as well.

The only down side is the packaging. There is a lot of it. But we're also wasting less food and eating healthier, so it's a trade off.

The last new thing I tried recently is a drug called Naltrexone for pain. It's originally intended to help people stop drinking and using opioid drugs, but they discovered in very small doses it helps block pain reception. 

For me it gave me insomnia at night and knocked me out during the day. It also made me really sweaty and gave me a headache. I gave it two weeks and then stopped. It did help my pain a little, but the side effects were too much. Sleeping 20/24hrs is no good.

I think the next thing we're trying for pain will be Ketamine infusions. I'll keep you posted.

Now for my Hungry Root healthy lunch. No Taco Bell today.

Looking Behind and Ahead

There's a saying in the field of Psychology that "Looking behind too much will cause depression. Looking ahead too much will cause anxiety." I think that's true, but looking behind is also how we learn.

I've had more than a few "AH HAH" moments from looking behind. In fact, I recently had an important memory.

In 2011 (about 14 years ago) I was trying to get into jogging. I wanted to jog a 5K. It was my goal. I signed up with a few friends to do it together. But I quickly discovered I had a problem. No matter how much I stretched and trained my right hip remained tight. It would cramp up on me even on the shortest, simplest of runs. I got new shoes, supportive leggings, tried many different ways to solve the issue, but nothing helped. 

Me in 2011

Yes... I'm stomping grapes with my bare feet.

The day of the 5K came and I ended up walking it. Even that was hard and painful. My friends finished quickly and then one circled back to walk with me and cheer me on. I cried a lot that day out of frustration. It's the first time I can remember my body just not being able to do something that I felt it should.

I had completely forgotten about that time until now. It seemed so easy for other people and I found it impossible. I now believe that was the start of my mitochondrial disease. That it stretched back that far. Now I live with that feeling of frustration pretty much every single day.

2025

Me sitting on my butt NOT grape stomping on a platform.

My right side has always been my "problem" side. My right hand is weaker. My right ankle cramps and I have drop foot on my right foot. It makes complete sense that the cramping I was having in my right hip was the very beginning of my muscle problems.

I have an appointment next week with my pain doctor. I cancelled the last one out of fear. This time I'm keeping an open mind and what to hear what she feels my options are.

I'm still working on this lesson.

All In One Year

 

My mother and I went spring garden shopping at our favorite nursery yesterday. It wasn't till my cart was full to bursting that I realized "Hey! This is my first time walking here!" Later on that day she sent me pictures of the last five years we were there. 

The picture above is 2023 and just below that yesterday, 2024. What an incredible difference a year makes.

I wish I could go back in time and tell myself to "Just hold on. Help is coming. You'll be here walking next year." What a miracle this still is.

I have a lot of pain and get tired. I need to remember to eat BEFORE I do something strenuous or exercise, not only after. Alcohol doesn't really agree with me anymore. When I was a wheelchair user I had far fewer after effects of drinking. Isn't that odd? Now my body's like "Heyyyy, we have enough going on without also metabolizing this poison you just drank." Fair enough body. I hear you.

Eight months ago that chair was still my only way to interact in the world. I call 2PM to 6PM "Magic hour" because that was the time I would miss out on every day. Every thought was about my disability and how I could best live my life. What tools I would need to get me through. How to explain my needs to people and anticipate them myself. Being disabled is exhausting.

Today was so wonderful planting all of my beautiful flowers. I'm not growing food this year in my raised bed. Just flowers and some herbs. I brought my back brace outside but didn't need to use it. Which is a testament to how much stronger my back and torso are becoming.

My weight is up, but I'm trying not to focus so hard on that. I'll be back at the gym tomorrow morning. Driving past my beautiful garden. 

Still Healing

I've been doing Yoga at home and a little bit of meditation lately. As in the last two weeks or so. My special room came along wonderful and is almost complete. It's a great space to do those things in, with my dogs staring at me of course. But that's much better than leaving them for the gym. Although I digress...

My point is that while I was meditating this morning I was trying to open myself up with my mind. Explore my body and see where the tension and pain is and what's causing it. I noticed that I felt very raw inside. Like an M&M but instead of chocolate I am a big, open, void of pain. That really shocked me. I leaned in even more to that feeling and saw it stemmed from the last five years of my disability being so serious. 

My loves, Margo (left) and Max (in the orange shirt)

I tend to gloss over things and move on to the next, on to the next. I tell myself that I sat with feelings and experiences but I think that's often a lie. I'm great at helping others sit with their feelings, but garbage at doing it myself. No shocker there. "Do as I say, not as I do."

I realized when really listening to that void that I am still healing from that experience. Of course I am. It has only been five months! That's what I would tell a client. "Of course you are! Hardly any time has passed at all!"

I've gone from not being able to walk around our neighborhood block to doing it while walking one dog and carrying another (poor sick Max) in a sling. All in five months. That's nothing short of miraculous.

Margo with her favorite toy

But what of all the other things that I can't see. That I'm "glossing over." All the time spent asleep. Those lost hours. Time spent not engaging with the world in the way that I'm used to. Energy spent on mobility challenges. The pain all of that caused both mental and physical. The impact it had on my relationships. On my husband, mother and son. I'm still feeling that.

I like meditation because it's a time to pause and really open myself up. I'm a person who needs time and space for that. 

Yoga makes me stronger and more flexible. But it also puts me in touch with my body. With my pain. And lets me know my limits right then and there.

Together both help me explore this new body of mine with love and intention. It's something I desperately need.

Sleeping Beauty

What is a "disability" anyway?

I consider myself to still be disabled. Many people would see me at the gym, or scrubbing down my kitchen counters and disagree. So why do I claim the word "disabled." What does that term mean to me?

To me any disability is something that gets in the way of your baseline functioning. That baseline is different for each person in the world. Only you know what it is. 

People with insomnia are disabled. If your depression makes you late for work, you have a disability. It's not just someone using a piece of durable medical equipment. A wheelchair, cane or walker. It's not someone with a missing limb or using sign language to communicate. And most of the time it's something you can't see. Like Autism or Mitochondrial Disease.

Yup. Still disabled.

I am disabled. I suffer from horrible chronic pain even now. A few times a week it makes sleep challenging for me. I take a slew of medications to try and keep at a level of pain that I can tolerate. I struggle with nerve damage on the side of my face where I had my brain surgery. It hurts when it is even touched. Often it hurts when it's not being touched. The Botox I take for my migraines helps it incredibly. Botox is a huge tool to keep the pain, dizziness, auras, pressure and other issues from my craniotomy at bay. But even so I have "breakthrough symptoms." Especially if the weather changes or I travel to even a slightly different elevation.

My migraine symptoms often make my head very fuzzy. My constant body pain doesn't help either. This impacts my memory. I often forget what I was saying, especially if someone interrupts me. Remembering names is a nightmare. I wish the world wore name tags.

You can't see any of these things. I don't go around screaming or crying when I'm in pain. The metal plates on my skull are on the inside (thank goodness.) I smile and get on with my life. If it gets too bad, I'll go to bed and try to sleep till the extra medication kicks in. I'm working hard to feed my body right, get rest and build muscle. That is a full time job for me right now and I'm unapologetic about it.

So yes I can walk, laugh, use gym equipment and stay awake through the day (most of the time). I am still a disabled woman and likely will be my entire life. My symptoms are just managed (most of the time) with a lot of hard work and great medical care.

Hello Body! Nice to Meet You!

This is the third week my mother and I have been going to our new gym. We have been trying to go five days a week and making it four. Something always seems to come up once a week. So far that "something" has been me feeling ill.

When we joined the gym we were give two free sessions with one of their trainers. That's pretty typical for around here. My guy was great. He's a pro boxer very into fitness. I told him my story and he was amazed. Then he had me do 60 squats. 

Punching things is FUN!

I had on my knee brace to help support my larger, painful knee. So I thought all was good and I could do anything he told me to with zero problems. It went down a bit like this. We spent a lovely 45 minutes together with him taking me from machine to machine lifting between 40-20lbs. I pushed myself HARD and did it all. I was even rewarded with him declaring me "feisty" when I tried to jump the gun on a few seconds of rest to do more. That's my nature. I push. 

Also... I like impressing people. I enjoy finding my limits physically. And as I told him. "It feels good to have some pain that I'm causing. Not that's happening TO me and that I have no control over." The results? Basically my body heard me say that and went "You like pain lady? Here's some pain for you!" 

Uh oh. I over did it BIG TIME! I mean "want to scream just trying to sit down on the toilet" level of over doing it. 

At first I felt mad at the trainer for pushing me so hard. I mean, he SHOULD have known better, right? Wrong. The person who pushed so hard was me. I was the one who should have known better. I should have been listening to those pain signals and realized I was going to be in a world of trouble if I didn't reign it in. It's my body. It's me.

Not even the hot tub could save me from this poor choice.

In my defence, I'm still getting to know... well... me! And I'm naturally "feisty" and a limit pusher. I tend to go in whole hog, then pull back later. That's just my nature. I'm not a "dip my toe in the water" type of person. Hence that often leading to injury.

So here I am two days later still in a lot of pain. Last night before bed I took: 1 prescription muscle relaxer, 3 Ibuprophen, 2 Acetaminophen and when that didn't work finally a CBD/THC gummy. Then I was able to get to sleep. Lesson learned. I want to/need to get used to pulling back and listening more to my body signals. 

Feeling Stronger

Back in November I thought I was going to be using my chair 100% of the time by now. Instead I feel like I'm getting stronger. I talked about pushing myself last month. I pushed through a pain threshold that I didn't think I could stand. This showed me that maybe I'm capable of doing more than I thought I could do. Then I started trying to do more physically then I thought that I could.

I'm still doing that. Swimming, gardening, house work and pushing. I'm listening to my body, but I'm pushing it too. Pushing hard like this is new for me. It's painful, but it's working. My strength and stamina are both building.

I explained the pain to my doctor like this. Most people acclimate to the pain of an activity the more they do it. Maybe it only hurts the first few times and then you adjust. For me it hurts every single time. The pain is there and it is constant. And I mean 24-7 pain that would likely put most people in bed. I just push through it.

I tell my husband that if I'm going to be in pain anyway I'd rather be moving and doing things in pain and having the distraction than laying around in pain with nothing but the pain to think about. Even if it causes me more pain to be physical, it's worth it to be stronger.

Pushing to me doesn't mean inflicting something on myself that's impossible or where I'll get hurt. I use my support tools like my walker, back brace, cane, whatever I need. Then I just see if I can do it (whatever I'm trying to do.) Just test the waters. If it feels ok I do more and more. If not then I stop.

Yesterday I was able to walk around our block with my walker. Something I haven't been able to do since last June. Today I took my walker to my medical appointment instead of my chair. I was comfortably able to do it and it felt amazing! I feel very proud that I'm finding my limits every day. Stretching myself to build muscle and do my best.

Pushing Myself Hard

Spring is here where I live and I have been a busy bee. My Mom's swimming pool is back open and we were the first ones in it again. It felt fantastic to be back in water. There's no other workout like it. From the first day back in the pool I decided I was going to push my muscles.

Still working out with water weights.

I felt like all winter I physically atrophied. I did the basics, but not really anything that pushed me physically. The only way I can keep what muscle I have (or hopefully build on it) is with pushing myself. I'm already in physical pain every day. There's nothing like fresh pain to make you forget your old pain. And boy do I have pain!

But I also think it's a kindove good, almost normal pain. Like the buff girl limping as she leaves the gym. It is also teaching me about my body. I'm much stronger than I think I am. Strength isn't my problem. Stamina is.

Getting the summer garden ready took a lot of strength!

I've also learned that my lower back is the first muscle group to feel the pain and to give out. My back brace is a big help, but it doesn't solve the underlying problem. I'm going to do some targeted exercises in the pool to see if that can help. 

I have my recent MRI to thank for this push. It was incredibly painful to endure laying still on the table. My right leg and back were screaming at me to stop. But I pushed through the entire process. I was able to go much further than I thought I could. To tolerated more pain then I thought. This got me thinking about the limits I place on myself and my body with my mind and my fear of pain.

Now to be clear, I'm not going into Rhabdomyolysis or running miles around the block. I'm cleaning, gardening, moving small things around, re-potting plants (that are heavy for me.) Pushing myself in all these areas of what I usually do. I've been cooking dinner at night as well. These are all tiny things to most people, but each activity leaves me drenched in sweat. Seriously. I can't remember the last time I sweat this much and for so many days in a row. I do not enjoy that part, but I do like feeling stronger.

I masked out where our new TV is going.
This was a ton of work!

Reprieve

After my recent night of desperation I put into action some things that have been helping out my incredible pain.

1) Made a tote bag full of all my resources. Creams, gel, pills, patches. All the stuff I have for pain. Now instead of just laying in bed in pain I can grab that bag, go into the bathroom and choose something to try and relieve it.

2) I found my "stash." Back in 2020 I tried some CBD/THC products to help my pain and migraines. It worked, but I didn't like the side effects. I kept most of it and found that the high CBD low THC gummies did help my pain quite a bit. 

3) Tried something new! I found some new cream that so far helps better than any other topical product I've tried so far. All CBD. No THC.

I'm also being very watchful of my activity levels and how I use my leg. I'm trying to really be vigilant to give everything a chance to heal up. So far it still hurts, but not at all like it was. I'll take it!

My Body

My illness has a few different names, but they all mean the same thing. Mitochondrial Myopathy, Mitochondrial Dysfunction and Mitochondrial Disease. My neurologist explained the differences just refer to severity with "disease" being the most severe. Here's a tiny bit about what I struggle with. 

What are mitochondrial myopathies?

Mitochondrial diseases are caused by defects in mitochondria, which are energy factories found inside almost all the cells in the body. Mitochondrial diseases that cause prominent muscular problems are called mitochondrial myopathies ("myo" means muscle and "pathos "means disease), while mitochondrial diseases that causes both prominent muscular and neurological problems are called mitochondrial encephalomyopathies (encephalo refers to the brain).

A typical human cell relies on hundreds of mitochondria to meet its energy needs. The symptoms of mitochondrial disease vary, because a person can have a unique mixture of healthy and defective mitochondria, with a unique distribution in the body.  In most cases, mitochondrial disease is a multisystem disorder affecting more than one type of cell, tissue, or organ.

My challenges appear as severe fatigue, brain fog and muscle weakness in my entire body. I also struggle with cramps, spasms and constant severe pain. These are all of the reasons why I can no longer work. Yes... even a little (a question I get a lot.) "Can't you just?" NO!!!

I've had this diagnosis for five years now. In that time my muscles have become progressively weaker.

On top of my mitochondrial disease ravaging my body, I have severe head problems. "Intractable migraine" and "neuralgia" (occipital and temporal). Icepick migraines can come and visit me too. They feel just how they sound. No one flat out said as much, but I expect these are all after effects from my brain surgery in 2018. I certainly never had any of these symptoms before.

So that's my body in a nutshell. All of these issues have combined to turn me into an incredibly mindful person. I fully live in each and every moment (that I'm awake). I also actively look for the beauty and joy that is everywhere to keep me going. These coping mechanisms are incredibly effective. Well, that and a lot of drugs and medical treatments.

The down side of is I struggle to plan into the future. Not intentionally. Not in a depressed way. But like my brain is too Zen and tuned in to what I'm doing in the now. It can make even little things like what to eat or watch on TV impossible for me to decide. It's a strange feeling. Maybe my brain is simply busy coping with the war raging in my body.

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. 

Never NOT Scary

I missed an opportunity.

I really should have done this post in October for Halloween.

Ah well. For some the winter holidays are even more frightening.

Like "What mobility aid will I need for which house?" "Will they have gluten free food for me?" "What time will it start?" Or "Will I be able to go at all!?" OOoooooOOOoo. Scary.

But what I find the most scary is when my abilities change. Sometimes it's a slow change. The slow boil that's hard to notice. Like not being able to change light bulbs anymore (especially above my head.) More often then not however it's something I used to be able to do one day and then I can't do it the next. Like...

• Walking around the block
• Painting my nails
• Baking
• Staying awake all day
• Driving

You get the idea.

And what I'm learning as I progress down this road is that when it happens it is never not scary. It's never not painful. It's never not alarming. It just doesn't get easier. Then the once unthinkable becomes the norm. Just like COVID did for so many millions of people. 

I don't know how many more of these landmarks are ahead of me. All I can do is savor each moment and enjoy what I CAN do while I can still do it. 

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.

Migraine Torment

I am still waiting for my Botox and to meet my new neurologist while my wonderful, usual one is on maternity leave. I will meet him and get my new shots in 10 days. Not that I'm counting. At least he finally got back to me (after an intervention by my primary doctor) and prescribed me something new to try and help in the meantime. That only took three weeks to get him to do.

My migraines are tormenting me. It feels like someone put me on a copy machine and made so many copies of my brain that now the ink is running out. I feel un-real. Not all here. Like I slipped between two realities. One of pain, dizziness, distractions and the real one. 

Conversations are hard to follow. I feel like I'm just a shadow of myself. A bad copy of who I should be. Quiet and then garbled. I call things and people by the wrong name. It takes a long time to say what I mean. It all feels awful.

I think that's one of the main reasons I tend to over eat. It grounds me. Gives me instant pleasure and makes me feel more... me! When I'm hungry that faded feeling only intensifies till I hit a point of not caring. Then it's actually challenging for me to eat.

Caring about things in my life (other than the people I love) is hard right now. The migraine just erases me bit by bit. 

I can't wait to get my Botox and start to feel like myself, even if it's only a minor improvement. Anything is better than this.