Little Pleasures

Little pleasures pack a big punch and mean a lot to me.

I used to find pleasure in good grades, a helpful session with a client, a big vacation... big moments. Sure little moments were nice too, but they were often overshadowed by bigger expectations.

One of the gifts I now have is that ability to find pure bliss in the smallest thing. A perfect dandelion on a walk. Free plants found to nurture back to health. A morning cuddle with my man. Petting my soft dog. All of these make me feel as happy as I felt eating seafood in Dublin Ireland. 

But it's more than that. These series of small moments weave together to form the tapestry of my happy life. They feel like little shooting stars in the night sky bringing a surprise of pleasure to my day. I feel fortunate not just to have them, but to see them. They were always there, but often I was too focused on the bigger joys to really soak them in. Staring so hard at the planets if you will that I missed the magic of the stars.

When I learned to relax my tight grip on expectations, my future and even the day, I started to enjoy my treasures even more. Sinking into my soft bed to rest. Snuggling with my stuffed shark. The warm water as I take a long shower. I'm incredibly lucky to have too many of these moments to count. 

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. 

Starting Idebenone

My mid-day exhaustion is a serious problem. Not being able to do anything "all day" has more of an impact than you would think it would. I miss out on a lot of life by sleeping from 3PM to 6PM every day.

I talked to my new muscular neurologist about this and asked if there was some kind of "ATP Booster" that could potentially help lift my afternoon curse. (If you don't know what an ATP is, check out this short, link to Mitochondrial Disease. It's really fantastic). She suggested I try a supplement called Idebenone. Actually, she was the second person to tell me about it. The first was a brilliant man in my MD support group.

Today's my first day on it, replacing the COQ10 that I take every day... all day every day. I'll take 500mg once a day for two weeks, then two of those a day for a month to see how it goes. My hope is that I'm able to sustain my energy and make it through an entire day without a nap.
"...idebenone is thought to increase the energy production inside cells as well as protect the mitochondria (and the cell) from damage."
Now you might think "well, what's wrong with taking a nap every day? Who wouldn't love that?" I'm guessing that's what you might be thinking because once upon a time I would have thought that too. I love naps actually. But that's not what happens to me. 

What happens is my body slowly shuts down and I "crash" more than nap. My muscles get weaker, it takes more effort to talk, my short term (working) memory gets worse and it becomes difficult to focus my eyes. Once my head hits the pillow I'm out like someone chloroformed me in an Agatha Christie book. Out-out. See the difference? Not fun at all and totally mandatory for my body.

This has been happening since late October (about four months) and I'm frankly concerned about it getting worse. A one hour nap increased to two then to two and a half and now three hours is pretty common. What if one day I just can't leave the bed? These are the thoughts that scare me.

On the plus side Idebenone has had some positive results in research, so I'm hopeful. I typically respond well to new things at first, but then adjust over time and they stop working as well. But I'm strong, brave and hopeful.

Daily Rhythm

After all of the holidays, my mom's birthday, my birthday, my son's birthday, I think I have something of a daily rhythm forming and it's really helpful.

I start my day off with a cup of coffee and a hand full of pills, like most Americans, but especially those with any kind of chronic illness/disability. 

Then I spend about 30minutes on some kind of household chore while I have the spoons. Laundry, dishes that kind of thing. After that I move into computer work. These days it's compiling my medical files for SSDI appeal of denial. 

Now I have all my relevant medical records on my hard drive and on my Google drive. There my mom and a family friend who is a PCP can both easily access my files and give me feedback if they notice something missing. AND if anything ever happens to my computer it's all backed up and organized. 

I have some other things in the work as far as SSDI goes, but it requires me leaving the house and is more complicated. It also requires more spoons. This is something I can do bit by bit every morning.

After that I eat something. Usually a banana, but sometimes avocado toast. Or sometimes it's actually lunch time and I have some kind of fish. I shower after I get my grub on.

When I emerge all soft and shiny fresh I usually switch gears and move onto something creative or go on a small errand or adventure with Sweetie and my Mom. Yesterday was rare in that I had the spoons for both. 

My Mom came over and while she was on an important phone call I made my FAVORITE dessert and something I was craving, rice krispy treats. Yes, it is hard for me to make, but it's a challenge I can still do. 

After her call we took my 13 year old "puppy" Sweetie out to our local Arboritum for a very short walk (Mom) roll (me). It was the first time Mom got to drive Pablo. She's in love.

After that the rest of my day is devoted to napping. Then my husband is home from work and the Man Cub is home from college. We all have dinner, watch a show and it's bed time. And no, I have no trouble taking a 2-3 hour nap and going to bed for the night soon after. Not. At. All. 

Not every day follows this flow 100%. Sometimes my Mom comes over in the morning and we spend the whole day together. Other times I don't see her at all and I do my own thing the whole day and maybe roll Sweetie on my own around my neighborhood. But a typical day is tending to follow this pattern and I love it.

Today I have my second cement person coming out. I hope it goes better than the first who totally flaked on me. I'm starting to feel a little more settled in my daily rhythms and even though I'm still struggling a lot with pain, fatigue, dizziness and other issues it does bring me a new feeling of calm that I welcome with open arms.

January 2020 Update

It has been a while since I checked in as far as how I'm feeling. How I'm actually doing symptom wise. What I'm trying medication wise and how things are going. So (insert drum roll please - and maybe a didgeridoo just for fun) here's a January 2020 update!

Here's the meds I'm currently taking and why

Prescription Meds

• LevoTHYROxine 125 mcg AM (taking for my hypothyroidism. I've had that for 17 years.)
• Lyrica 75 mg BID AM&PM (taking that for my stocking glove peripheral neuropathy. I've had that for 5 years since treatment for the Latent TB. Likely caused by the treatment. It keeps me from feeling like I'm being eaten alive by fire ants.)
• Cymbalta 60 mg PM (taking for joint and muscle pain. Also it helps for depression. I recently tried to wean off and was rewarded with severe pain. It's a must take.)
• Baclofen 20 mg Three times a day(TID) AM – 12 – PM (a magical pill that helps with my muscle cramps and spasms. This is a muscle relaxer commonly given to people with MS. I found it on my own after researching treatments for muscle cramps and spasms after my neurologist told me my only option was CBD. Hmmmm. Nope. The Baclofen is wonderful.)
• Topiramate 25mg BID AM&PM (This is "Topamax" that I just started for "migraines." Both my new neurologist and an ENT Dr told me I have migraines. This was suggested. It's an anti-seizure med but is supposed to work for migraines. We'll see. So for it has a lot of side effects.)

“Mito Cocktail” for Mitochondrial Myopathy

• COQ10 Enzyme 1,500 mg total daily (300mg 5x a day)
• L-Arginine 500mg daily
• Vit. D 2,000IU AM
• B-2 400mg AM
• Magnesium 360mg AM – 500mg PM
• Feverfew 100mg AM
• Wild Alaskan Fish Oil 1,400mg BID AM-PM

(The first two are amazingly helpful. I'm honestly not sure about the rest.)These are all recommended for anyone with any kind of mitochondrial issue. It's the first line of defense and often the ONLY "cure" for mitochondrial disease of any kind.
-gulp-

PRN - Take as needed

• Albuterol Inhaler PRN (apx 1x daily)(I take for asthma. I've had increasing problems with breathing last year)
• Acetaminophen 500mg +2 PRN (apx 2x per week) (I take this for pain. It works better for me than Ibuprophen) 

Yes! All those drugs are really helpful. Well, almost all of them. But what makes a world of difference for me is rest and sleep. If I get enough of it I can function ok... usually... till around noon and then I start to get tired. 

By 3pm I REALLY need a nap. Then I nap from 3 or 3:30 till 5:30 or 6. That's what my body really needs. If that doesn't happen I feel super punch drunk all day.

I like to be in bed no later than 9pm. Yup. That's WITH a giant nap. Then I sleep from around 10 till 9AM. My sleep is usually pretty interrupted with having to pee a lot and drink a lot. Even with a cool mist humidifier right by my face I have dry mouth pretty bad at night. If I'm at all sick that gets worse times a thousand for some reason. 

I stopped shaving my legs and arm pits.

Here are some recent changes I've made to make my life easier and save spoons.

I'm a pretty fuzzy chick by nature. My family didn't give me the nickname "Little Bear" for nothing. And chasing my leg and armpit hair multiple times a week was fricken exhausting. I tried everything. Regular razors. Sensitive razors. Shaving cream. Razors with shaving cream built right in. Electric razors you could take right in the shower with you (so I could use them on my shower stool). 

But hey! Being six feet tall with legs to the sky (as my pictures can attest to) that still took forever and literally all my spoons for the day. I threw in the towel at the beginning of the year. And you know what? I actually don't have as much leg hair anymore as I though. I think after so many years of shaving many of my follicles have given up the ghost.

No more coloring.

I'm also going back to my natural hair color. 

Although the henna was fun and I did have one last dance with the box dye devil... none of it is ME. It all takes time, money (something I'll get to in a minute) and is just a cultural construct of beauty that I really don't need in my life. Again, it also takes spoons that I'd rather spend on other things like time with my family, art, writing, etc.

Sticking to my budget

We have a family budget and now that we bought Pablo it's VERRRRRRRRRYYYYYYYYYYY important that I stick to it. Like 100%. As in no more buying myself a little shiny bauble. But come on... it was my birthday and they're natural sapphires, miner cut set it platinum, real vintage from England... how could I resist!?!? Well... obviously I couldn't. But that's it! Last hurrah. I'll be good now honey, I promise.

Ok, back to symptoms.

They're the same really. I'm up to the full dose on the Topamax after two weeks which is 25mg 2x a day. I feel even dizzier, more tired and out of it than before. I'm hoping that's temporary. I'm willing to give it a month because trying to be as healthy as possible is my full time job.

Even though I meet almost every criteria for a Vestibular Migraine I'm not completely convinced that's what's going on with me (despite two wonderful professionals telling me it is). Why? Because I have these symptoms all of the time. They don't "come and go" or "trigger". They only get worse and very rarely get better. 

What makes them worse is physical exertion or a major visual trigger like flashing lights or staring at contrasting vertical blinds for more than a few seconds. Rest does make it a little better, but it is never, ever "gone". 

This feeling of dizziness, foggy headedness, constant exhaustion, forgetfulness and chronic pain is why I was no longer able to work. It had nothing to do with my lack of mobility. I can always work around that with my job. But not being able to track in a conversation or having my vision blur out or suddenly being exhausted, that I can't just "work around". That was a deal breaker.

So that's where I am. I very rarely drive and if I do it's super short distances. My mood is ok. I have bouts of feeling in limbo still because my permanent disability isn't secured yet. But I am on temporary disability for 7 more months and my student loan dismissal based on disability was approved, so that's a very big deal. I do feel I'm making some progress in my life as Pablo shows. He's like my personal boat taking me off into my new future and I appreciate that a lot. 

I appreciate my family, my medical team, my good health care and insurance, my puppy, my home, my wonderful healthy food, my plants that make me smile when I see them, my delicious coffee, the lovely town I live in. I am a very lucky woman in so many ways. 

My husband is the love of my life and my best friend. I'm so lucky to wake up with him every day. So I like to notice what I have instead of what I don't and what I have is a LOT!

The in-between times

So much of having a chronic illness is waiting. Some people wait for surgery or chemo treatments. I wait for brain MRI's, doctors appointments and testing.

But my life can't just be ALL about my illness(s). So what about the in-between times? In-between the doctors appointments, medical testing, waiting, symptoms trying to take over... what do I do then? 

Well, one of the things I like to do is keep up on my henna head. This time I went to my mom's hotel room and she did it for me. It was much easier than getting all the little spots myself and it came out lovely. 

Another thing I do a lot of (as much as I can really) is rest. I try and nap every day. Usually between two and three and a half hours. And no. It never effects my night time sleep. I sleep like a rock (usually). Aside from my puppy I also snuggle my giant stuffed shark "Bruce" and of course, my husband. 

I also find small things to lift my spirits. Having bright fingernails is one of those things I like to do. I used to have a tradition of painting my nails in a sparkle polish before any big test. I used to tell people "It's impossible to feel stressed with sparkly fairy nails!" That's a motto I still hold to.

On that note, I'm going to take a nap and paint my nails.

Next up... "Plan Kick Ass" update. 

"Don't Over Do It!"

I told my husband yesterday that I have 2 modes, High and off. This is very true. I either try to be out in the garden working up a sweat, cleaning my house, doing loads and loads of laundry, or I'm asleep. I've been enjoying naps daily since my surgery. I mean, I've always enjoyed naps, but these are NAPS. Usually about 3 hours long. And believe it or not I sleep just fine at night after napping for 3 hours. My body evidently requires lots of rest right now. However I'm not great at always listening to what my body wants.

I'm ready for my hair to grow back.

I'm not super patient!

On the up-side, my garden is looking fantastic! My muscles are still a big problem, but I find that as long as I don't walk much and lean on my gardening tools a lot, I can get quite a bit done! That's a big improvement over what I was able to do before. Although, I was also working long days before so I'm not sure how long I can sustain this level of HGTV domesticity. I'll just enjoy it while I can.

I'm a sucker for a wattle fence.

I really am trying to nurture myself too. I read recently about how taking a collagen supplement can help people with RA. It is said to reduce joint pain (and also is good for your skin, hair and nails.) So today is day 3 of me trying that out. 

It's very... ahhh... thick and foamy. Let's just say I drink it fast. So far I'm mixing it with chocolate milk which I think is as good as it's going to get. I'll let you know if I see any results. I'm also taking 500mg of Biotin to help my hair grow fast. And eating a lot of eggs. I've never taken Biotin before, but I know it's supposed to be helpful for your hair, skin and nails too. All things I can use while healing up all my scars from the brain surgery. 

In the meantime, I'm trying to find my balance and listen more gently and closely to my body and what it needs. All I can do it try.

My Sweet Companion

I'd like you to meet a very important person in my life. She's been with me for the last 12 years. She's seen me at my best and at my lowest. I can testify that her fur is very absorbent for tears. This is my precious dog "Sweetie." I adopted her from our local animal shelter when she was just 3 months old. Although we've had a few dogs before her, she is my first "puppy" and very much "my girl."

I'll tell Sweetie "want to go nap?" And she'll come and jump on my bed with me and stay there till I get up again. She's been the best companion I could have asked for through all of my illnesses and challenges. I don't know what I'd do without her. 

We DO have another dog. Her name is Lulu. She's a full blooded Basset Hound that we also rescued. We think we're her 5th family and she's been our girl for about 4 years now. She's very sweet and full of love too. But unlike Sweetie, she's high maintenance and needs a ton of attention. Lulu is my husband's girl just like Sweetie is mine. But of course we love them both and would do almost anything for them. They both bring a ton of joy to our lives.

Illusive Sleep

With chronic illness comes chronic sleepless nights. For a while the Lyrica and Cymbalta were both helping me sleep. But I've noticed a pattern where the Lyrica will help for 2-3 weeks, then it's like I've adjusted to it and it doesn't help as much anymore.

The neuropathy in my legs and pain in my joints (toes, back, shoulders) keeps me up at night. I sleep with a Fitbit and although not 100% accurate I always feel it's pretty darn close. I can tell easily when I don't get enough deep sleep or REM sleep, or both.

This was last night's report:

SLEEEP! Why you no work!?

And this was about 3 weeks ago when the Lyrica was really helping:

I like how you can see the average "benchmark" range.

I pretty quickly went from hitting my sleep goals to being "atypical" even at night. Darn. Now I did just start a new job, but honestly I don't feel like that's affecting my sleep. In fact if anything I should be sleeping BETTER because I'm chronically exhausted.

On days I don't work it's less of a big deal because I can nap. But soon my 2 days a week will move up to 4 and then I'm worried. I have a message out to my neurologist asking about a dose increase, but once again it's been 4 days and I still haven't heard back. -sigh- They don't call us "patients" for nothing, right?

I'm Tired

I'M TIRED!!!

Not just as in "I need a nap" (but I think that I do.) I'm tired of all of it. I'm tired of looking up my symptoms online trying frantically to find some kind of answer for what's happening and why. "Progressive neuropathy, hand weakness, post INH treatment" is a common one. I look up peer reviewed journals, personal blogs, National Health Institute information. And trust me, I'm no hypochondriac. Quite the opposite. I "fake well" all the time. 

I do these things because knowing the name of your enemy is important. Why do you think names were always such a big magical deal in the stories we heard as children? If you know the name of your enemy, what it's after, what the plan is, then you can form your own plan and attack. To have no idea what it is that's happening to you, what's attacking you, is like fighting against mist. You just end up tired. 

Although I'm trying everything I can think of to help myself I'm still fighting against mist. I keep hoping for that one article or study that will suddenly bring it all into focus. But more and more I have to ask myself what I'm going to do if that doesn't happen?

I recently started a new job. It's a career that I've worked very hard for and it feels amazing to finally be here, earning money doing what I love. I'm lucky to be in a situation where I had the opportunity and means to figure out what my passion was and then chase that dream till it was mine. But I'm also a bit scared.

I'm scared that my body won't be "on board" with me working 40 hours a week. That I'll be too exhausted for anything other than work every day. That my weekends will be 100% recovery time. I'm worried "the mist" will try and take over what I love to do. 

I'm fortunate that I have a very flexible job and I'm in charge of my own schedule. That gives me a lot of options not open to many people in similar situations. But that fear in the back of my mind says "What if it just keeps getting worse? What if I just keep on declining and there's no magic 'thing' that puts me back together again?" 

My husband is fantastic (as I already shared) and doesn't hesitate to pick up the slack. He's also wonderful at reminding me of all the tools at my disposal. Like "speech to text" on my iPad if typing gets too hard. Or that I can just go to bed after work if I need to. We meal plan and shop together. I love to garden (when I can) and he's taken over almost all of the weeding duties for me. So it's very helpful having him to remind me of my options, hold my "paw" and tell me what a big brave fighter I am and that I can do anything I put my mind to. Even working 40 hours a week. Even (hopefully) finding some answers soon.

And now I wait for my new neurologist to call me to schedule an appointment and the results of my hand MRI. Waiting also makes me tired.