Turn for the Worse

On April 20th, 2022 I had my Botox for Migraine as usual. I get it every three months. It's a big deal when I'm eligible to have it done again as I'm usually a good month past needing it. This time I felt I was around six weeks past needing it.

Each time I get it the results are different. But typically every other time it is a solid 6-8 weeks of no migraine headaches and greatly reduced other symptoms (like aura's, vertigo and other vision issues.) The last two times were a bit of a dud, so I had high expectations for this round.

This must have been what Norm felt like rolling into Cheers every day.

This Botox session was different from the start. It hurt a lot more and I bled a lot, which had never happened before.

So that was April 20th.

Two days later on April 22nd a small blood vessel burst in my left eye. No big deal. I call the left my "bad side" because that's where I had brain surgery three short years ago. Although I haven't had a burst blood vessel in my eye in five years.

Three days later I could tell I was getting some kind of mouth and tongue infection. It felt like thrush maybe? But I had blistering too. Shit was starting to get a little strange.

Blisters under my tongue.

Webbing and redness inside my cheeks.

"Geographic tongue" (the spotting) and coating.

I tried treating it myself with salt water gargles, but by May 3rd it was bad enough for me to just go to my local Urgent Care. The doctor there wasn't so sure it was thrush and thought it might be an autoimmune reaction. She prescribed me two disgusting mouth washes and I went along with my life.

When I went in I had tongue pain, a sore throat and pain deep in my left ear.

Just four days later on May 7th, a large blood vessel AGAIN in my left eye burst. WTF! Now I was getting a little freaked out. I messaged my doctor and he confirmed it was just a burst blood vessel. Nothing to do but wait it out. It wasn't painful. Just a little itchy. And I felt like I looked like a zombie for Mother's Day. How fun!

My husband took this graphic picture for me.

It looks like it burst up, then the blood trickled down.

Nasty!

You'd think that would be the end of it.

But wait! There's more!

Now the excruciating migraine headaches started.

The first one lasted 24 hours. From May 9th-10th. I took my usual trio of medications to try and help. Compazine (for pain), Naratriptan (for nausea) and 1,000mg of Ibuprofen (just over the counter stuff.) I call it my "trio of helpers." I can't take them more than three times a week though. 

The second migraine was thwarted by the "trio of helpers" and only lasted five hours. That was the very next day on May 11th. On May 12th I was hit again, but couldn't take my meds so close together, so I tried to ride it out. Nope. Now I was getting scared. On the 1-10 pain scale I was at about an 8 and seriously considering going to the hospital. 

During the middle of the night on May 12th I awoke in the middle of the night to the familiar tingling feeling of a fever blister forming on my top lip. I hustled to the bathroom to dig out my herbal treatment and "doctored" it. Shaking my head I went back to bed. 

Hello fever blister.

Welcome to the party!

During the night on both the 12th and 13th it felt like something was draining down my throat. I started to wonder if I had formed some kind of abscess from one of my shots and it was draining now? The pain in my left inner ear was worse, but that could be from some kind of inflammation or pinched nerve. I was also now 100% sure that my poor immune system was being severely compromised. 

My nurse practitioner who did the Botox shots has ordered a shot of Compazine and Toradol for the head pain. I wanted to go and get it yesterday before the weekend hit, but my insurance didn't approve it yet. Seriously!?! She also ordered me a nasal spray to try through our local compound pharmacy. But it's a special order and will take some time to create for me. As much as I appreciate her solutions, it's not helping me right now. 

Today is May 14th and I'm typing this with a fever blister, migraine headache (though it is slowly improving) left ear pain, mouth discomfort and a sore throat. I'm constantly torn between trying to "ride it out" and going to the hospital. I also can't stand not knowing what's going on with my body. I like answers and solutions. 

UPDATE (June 1st):

So I believe I had a severe sinus infection that I just couldn't feel because of the Botox. What a weird thing to have happen. I suspect it was caused by my BiPap machine, so I have completely stopped using it.

After three days of "drainage" (nice word for puss) down my throat all night long I felt much better and the pressure was off my ear. I think the pressure from the infection caused those blood vessels to burst in my eye. Then my body fighting the infection caused all the other things (tongue issues, fever blister, etc...)

I had my doctor test me for sepsis just to be on the safe side. Everything was negative. I still have a strange rash that he'll check out for me Friday. I was pretty sick for almost the entire month of May. I may never know what really caused it, but I'm being much more cautious now. I'm also very impressed that my body fought it off all by itself.

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

What do I want from 2022

I love January. It feels fresh and new. Like pajamas smelling sweet and clean from the dryer. The year is ripe with potential and anything feels possible. 

I was reflecting and asking myself this morning, "What do I want out of 2022?" Sometimes I think I know what my goals are, but are they really MY goals? Or just goals that society inflicts upon me?

This year marks the third year that I've been unable to work. That feels like a long time. A big deal. Then I remind myself that working on myself IS VERY HARD WORK! It takes all of my time every day just to live. What my doctor calls "tasks of daily living." They are a challenge for me.

So here's WHAT I WANT out of 2022:

• Continue asking questions and pushing my medical team for the best care there is.
  
  
• Keep on keepin on with the weight loss and healthy eating. 
  
  
• Be there as much as I can be mentally for my family and friends.
  
  
• Carve out time for social connectedness in real life (as much as is safe to do and as much as I can do.)
  
  
• Help Max meet his great puppy potential for a full and happy life (free of anxiety).
  
  
• Develop the remains of our front yard garden and completely finish that project.

Dreams and Reality

I often lay in bed and question what I can and cannot do. I picture myself going for a run. Or even just walking around my block. I ask myself if I'm sure I really can't do these things. When was the last time I tried? How do I know that I can't do it unless I give it a go?

In my head I strap on my tennis shoes (that now belong to my husband because we have the same size feet and he's... well... able bodied.) Then I go for a light jog around my neighborhood just like I used to.

Suddenly I'm no longer running, I'm surfing (something just as realistic). I'm up on a long board alone zipping over clear teal water. I wave hello to the fish and turtles under me. 

Next it's stairs. How many stairs can I climb? By myself? While holding the rail? Not at all? I picture myself in a stadium zipping up endless steps. I'm wearing short bike shorts and looking like a trainer from Biggest Loser (and not the contestant body I currently have).

When I wake up I decide to try something out.
I don't strap on my tennis shoes, or scrounge up a surfboard.
But I eye our kitchen step stool. The one with the big handle.
I figure I can go up and down that and it can count as a "step."
How many can I do?

Well... Without holding onto the handle I can go up and down 4 times. Four steps on my own. Holding onto the handle I can manage 7 (which impressed me!) Seven steps, but I feel my arm and leg muscles burn for about two hours after. Like I was surfing. Not on a kitchen stool.

I like knowing my physical limits. It helps me mentally cope with being a chronically ill woman. It can also help me when communicating with my doctors. In the past when I was asked how many steps can I walk up my answer was always "I don't know, I avoid them."

I'm sure the answers will change, but for now I know where I stand. What my body is capable of. I shudder to think of underestimating myself in any way. Avoiding things just because I think I can't do them.

Maybe tonight I'll dream of scuba diving?

Reflecting on 2021

 

This year has come with many gains and loses for me. I lost my beloved Nana in mid-November. She was a second mother to me. Even though someone slips from the evil grasps of pain, it's still a loss. I know she's no longer suffering. But I also know I will never see her or hear her sing-song voice again. I kept some voicemails she left for me over the last few years and I'm grateful to have them. She had such an infectious laugh. One of my favorite things about my family as a whole is that we have all maintained our inner child. I can't say that for most people.

I also lost my sweet puppy girl of 16 years, Sweetie. Which I wrote about here. My son moved out of our home in an explosive way. That felt like a loss. And I felt like I finally had time to mourn my lack of ability to work. 

But my life is never just about loss. In fact every time I have a tremendous loss (like no longer being able to work), I also tend to have a huge gain (like my mother moving around the corner from me after being in England). 

So let's talk about my gains this year. 

Right up there with getting my clinicians license is my new fella Max. I worked very hard for that license. It was the climax of my education and training. Two thousand hours of working with clients, suffering through TB treatment, a total hysterectomy, a brain tumor and the start of my Mitochondrial Disease...WOW! For Max to be just as great speaks how important he is to me.

Another bright spot of my year was how much I was able to reconnect with my friends and family. My husband and I had a blast at "Friendsgiving" in November. We saw a lot of family that we missed last year. I had a life-changing heart-to-heart talk with my best friend since first grade. In short, I basked in the company of other people.

I like to think of myself as some kind of "Uber Introvert" who doesn't need the company of other people. But that's a lie I tell to protect myself from feeling rejected. Honestly I love to be around other people. And I'm doing much better at letting my limits be known.

Here are just a few things I want to remember that happened this year that were positive:

• I spent time with my Grandmother-in-law. One of my favorite people in the world.
• I had a lot of laughs with my Mama (just like last year, but it's important to savor those moments.)
• I produced some truly horrible art, but had fun doing it.
• I took some fantastic photos.
• I found new ways to do the things I love (asked for help, waited till later, worked around my disability.)
• I stopped fighting the need for rest.
• I went to the Monterey Bay Aquarium when they were practically empty. A dream come true!
• I saw the Mendocino Botanical Gardens for two days with the love of my life.
• I was finally approved for Whole Genome Sequencing along with my son and mother.
• We built our dream patio, complete with waterfall!
• I got my little room back (once my son left).
• I learned I can drink red wine again with some magical little drops that remove the sulfates. 
• I was kissed and hugged about a million times.
• I got back down to a weight that I feel ok with. Not perfect, but better.

Just looking at this list makes me feel both happy and proud. I love my life, even with its limitations. I am safe, warm, fed and very loved. I wish everyone in the world could say the same. That's my wish for 2022.

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.

Growing & Shrinking

Growth isn't linear. That's something I remind myself of constantly. It's actually a lot like grief. I will have times of great growth, times of dormancy and times of regression. It's not a beautiful upward swoosh like a Nike logo. It's more like that hair ball clogging your drain. And it can feel that way at times too.

I've lost 24lbs since early June of this year. As of today. As of right now. That number goes up and down at times, but it's on a trend that I like. Each of those pounds has felt like a Herculean effort on my part. Resisting a parade of temptations (and sometimes giving in), swimming as much as I can, weighing myself weekly, then every few days, then daily, then every few days, then weekly... It's a dance that I'm doing with myself. Sometimes light on my feet, other times stepping on my own toes.

I always read that it's harder to lose weight the older you get as your metabolism goes. Back when I was "healthy" it was hard for me to lose weight because of my sluggish raisin of a thyroid. Even with synthetic replacement. Add a mitochondrial disease on top that hugely affects my energy and muscle ability and I was in for a bigger challenge than I realized.

Hence the drain clog of a process. Up and down and all around, back upon itself. But it is change. And I feel a lot of pride. I've lost a small toddler so far! Only a full adult to go. 

I see myself being pleased with about 82 more pounds lost, but I'll see how it feels.

I have vacillated between being a happy, thick adult woman and wishing to be a thinner version of myself my entire adult life. There's an important distinction there because I've never wished to be anyone other than me. Not even when I had a brain tumor and started to need the help of a wheelchair. Social media doesn't give me FOMO or make me covet other women's looks. Rather it gives me an appreciation for the feminine diversity and makes me even happier in my skin than I was before. 

Any desire to be thinner has always come down to health for me. In the past I would notice things such as my lack of stamina going up stairs. Joint pain or muscle pain after doing a Zumba fitness class. How I felt I should and could be more flexible. That hit an all time high with my mitochondrial disease. 

Self sympathy played a big part in my weight staying higher than I like once I had compromised mobility and muscle use. I told myself that if I couldn't have an orgasm I could have a massive Taco Bell feast or a whole batch of rice crispy treats. Not that I had those things very often. My big problem was just eating too many calories on a regular basis. Not particularly anything unhealthy regularly.

And then there was COVID. Everyone I know gained weight during 2020. I was no exception. But when I passed 300lbs red alarm bells went off in my head. I had come to a crossroads. Was I going to be a life-long big woman who would eat what I wanted and not worry about the consequences? I have many friends who have chosen this path and they are very happy. They look stunning! But I knew it wasn't for me.

The more weight and pressure I put on my joints and muscles, the unhealthier I personally am because of my disease. My body has to work that much harder to maintain any mobility and I have a lot more pain. I couldn't do that to myself. I love myself more than the liberated feeling I get from being able to eat what I want.

I want to feel as good as I feel in the water, on land. This can only happen with weight loss. A serious amount of weight loss. I'm fine with going slow, not going in a linear direction, but I have a destination in sight. I want to be a might lighter version of myself, for myself. For my health and for all of my muscles.