Hello Again

Hello out there. Since it’s been so long since I’ve posted, I'm not sure where to start, so I’ll start at “Hello.”

Sorry for the silence here the last two months. My condition took a sharp turn about a month and a half ago and I’ve spent most of my days since just surviving.

I haven’t been doing well the last few months. I haven’t had a decent night’s sleep in four months. Sometimes I only sleep 2 hours a night. Sleeping and breathing at the same time is not really a thing my body is able to do anymore and that is the main culprit of my insomnia, although it’s not the only reason. But there’s good news on that front (I discuss more below).

Since I haven’t been sleeping well, the weakness in my limbs has turned to paralysis. Not having use of my limbs makes typing really challenging. Thus, I haven’t posted. 

A month and a half ago, I woke up one day and felt the heaviness in my limbs, the signal they send me to say “you have little use of us today and if you over-do it we’ll shut down completely. Good luck!”

I heard what they told me but I loaded the dishwasher anyway. I said “I do what I want! You don’t own me.” I moved too much anyway. I pushed too far. Bam. My muscles completely shut down. Typically, I can rest for a few hours and they’ll come back to life, but it was different this time. 

I haven’t been able to stand or walk since and my wheelchair is my constant companion now.

My BFF always jokes that Myasthenia Gravis sounds like a Harry Potter spell. If it was a Harry Potter spell, it would make your limbs turn into gummy worms.

The first few weeks when this started I needed help with every basic task, including getting to the bathroom. Since then, I’ve gotten some of the independence I had before back, but I still need help showering and making food. I can't help with any cleaning. We have to prepare my food the day before. I still have intermittent use of my arms.

I've lived in fear of this the last year. I have had periods where the paralysis intensifies and I can barely get around my house with my cane, or I'm not able to walk at all. But the longest I've ever been unable to walk is 12 hours. This is a new normal indeed.

My whole body has become so weak and deconditioned without any movement at all. All this time I’ve been trying to imagine how I’m going to rebuild my strength. It’s a daunting task. Imagining just walking from my bed to my bathroom again feels like climbing Everest. There’s no chance to rebuild my strength right now because any time I try to use my muscles the more the paralysis sets in. That’s typical for Myasthenia. Using muscles draws the antibodies from your blood into the muscle, making it weaker and weaker.

So I’m not completely sure how I’m going to climb out of this. I’m honestly just trying to go with it, take it day by day and moment by moment. My body makes the rules so I'm just trying to finally learn how to follow its lead and not fight against it. The harder I fight, the more I sink in the quicksand. It's better just to roll with it, literally. 

So I continue to wait.

When the paralysis was so intense that I needed help with every basic task, husband and I packed a bag and planned to head to the ER. I mentally prepared myself for a long hospital stay. But my neurologist (who has been minimally helpful during this health crisis) told us not to go to the ER unless my breathing completely shut down. My packed hospital bag is still sitting on the floor in our room just in case.

It’s incredibly frustrating. I had been making progress with yoga the last 6 months, I had been able to walk farther than I had been able to almost a year in Febraury, and now it's gone. I keep thinking “what did I do? How did this happen?”

I think I have an idea of what happened. I got over-ambitious. I was in denial about how much I have declined in the last 6 months in general. Ever since that day that I screwed up, took my body for granted, and tried to play with my nephew for a few minutes back in March, I haven’t been the same. That started the insomnia and the constant insomnia turned the usual muscle weakness into paralysis. I started a higher dose of the medication I use to sleep and I think that played a role too. 

I think that’s how I got here.  But it’s often fruitless to backtrack and try to figure out how or why. Illness often has a mind of its own and control is an illusion. Trying to find a narrative that explains the 'how' and 'why' often is a pointless endeavor.

Although this crisis has been challenging for husband and I, we have started adapting to it. I have adjusted to using the wheelchair all of the time pretty well. We’ve come up with solutions to help me maintain some of my independence and preserve the strength and energy I have. Each night, husband prepares my breakfast and lunch for the next day.

It may sound strange, but in some ways this crisis has given me more resilience. I was extremely depressed the few months before this because I was having difficulty exercising, walking, or seeing any of my friends and family. Yet, this has given me a huge appreciation for the independence and mobility I had. It has given me more determination to move again and get my strength back.

Bella appreciates having another place to sit

I haven’t been able to play my keyboard in two months, the longest I have ever gone. That, more than not being able to walk, has been the most devastating part of this. But I’m determined to be able to have enough use of my arms and enough energy to play again. I want to go back to the assisted care facility where my mom lived to play for them again in the near future.

I’ve been listening to a lot of music, especially playing my vinyl collection, and reading (follow me on Instagram to see pictures of my vinyl collection. I'm @StefanieShea over there). I’ve even been able to wheel myself outside sometimes. Husband and I have been watching a lot of Star Trek. Even though I’m still not well, I still feel satisfied with life in many ways. 

In times like this, I've learned you have to find strategies to not let frustration overwhelm you. It can start a fire that consumes every part of your life. You have to fiercely guard what joy you still have. Ultimately, I've learned gratitude is the antidote to suffering. 

To the good news:

A few weeks ago, I had an appointment with my pulmonologist. I haven’t made it to any appointments with any of my doctors this year and the only test I made it to was my pulmonary function test in April. Everything else I have had to cancel because I wasn’t well enough. I was in terrible shape and not able to travel but I had to make it to this appointment. I had to tell my doctor that breathing and sleeping have become even harder.

It was over 100 degrees that day, making the trek to the next town over to see her even more challenging. But husband created an elaborate game plan to make sure I was comfortable and able to make it.

I started crying as soon as we got in the room. I could barely talk to her nurse. I don’t cry in appointments anymore. It wastes time. I always have my game face on and a detailed list of questions and points to discuss. When my doctor came in, I was still a weepy mess. I could barely use my limbs or sit up and I was exhausted from traveling and suffering. It was too much.

My pulmonologist is incredible. I wish every doctor had her empathy and compassion. She was distraught at my condition and my emotional state. I’m usually all smiles and business when I see her, no matter how terrible I feel. I asked her again if there was any way I could get a breathing machine finally, something we’ve been talking about for a year since the respiratory muscle weakness from MG has been my most difficult symptom to manage the last few years. She said she’d do everything in her power but she thought my insurance would not cover it. I left incredibly disappointed. The inhalers she gave me and the canned oxygen I buy online are not enough to offset my breathing difficulty and it is the major culprit for my insomnia, leading to my declined state. 

I've heard "this treatment will help you but your insurance won't cover it" so many times. That's the reason my neurologist hasn't been able to start the standard MG immunotherapy for me.

A few days later we got a call that I had been approved for a BiPaP machine. Wait. What? How? We couldn’t believe it! I don’t know how my doctor did it but I need to send her some flowers.

Two respiratory nurses brought the machine over last week and showed us how to use it. The first night I tried to sleep with it on and ended up only sleeping a few hours that night, long after I took the mask off. It’s going to take some time to be able to fall asleep with it on. I’m having a lot of trouble sleeping even without an uncomfortable apparatus attached to my face.

But I’ve been using it during the day, before bed, and when I wake up at night not breathing and what a difference it has made. WOW! Who knew breathing was so great? The only problem is my insurance didn’t cover the full cost of the machine. Our monthly co-pay for it is $100, which is steep. We looked at our budget and worked things around to make it feasible.

The day I got my machine, my best friend created a GoFundMe page to help cover the cost. I guess my closest friends had been planning this as soon as they heard I was approved for the machine. I was considering asking them to take it down but my friend explained that people wanted to help and they had been looking for a way to help. Friends, family, and even strangers contributed.

I am astonished at their kindness. It has been an elixir of hope the last week knowing so many people were rooting for me and wanted to help us. We are so grateful for the love and support.

So right now I’m working on getting adjusted to the machine and crossing my fingers and hoping I can start building my strength again. I’m hoping to get back to blogging regularly again. I can’t believe it’s been two months since I’ve posted. For any of you still reading, thanks for hanging on and bearing with me.

There have even been days where I have enough strength to do fun things, like re-plant our Stonehenge garden.

I have also learned that when you live a life of limitation and the most excited thing you have to look forward to is leaving the house for blood work or an appointment, you have to create things to look forward to and focus on them instead. This week is our 10th wedding anniversary and we're going to have a big party with our friends and family. We had always planned to drive to Yellowstone for our 10th, but that's not possible. A party is just as great. We're going to Monterey in a few weeks to stay for about a week with some friends. It will be the first time I've left my town for something other than an appointment in two years! We have friends and family coming to visit from other states in the next few months. Despite the obvious drawbacks, life is pretty good.

And you have to hold fast to that.

To better days ahead for all of us…..

Climbing My Way Back

Hello out there. Sorry for the silence here on the blog the last few weeks. I’m working my way back to the world and the blog. It’s a slow climb but I’m making progress.

A few weeks ago, I did something really really stupid. I’m keenly aware of my limitations and I spend so much time managing symptoms and staying within those limitations, but I suppose I needed a reminder that they are still there. I tried to play with one of my nephews. It was just a few minutes of unbridled fun, but it was far more than my body could handle unfortunately. I often feel sad that I can’t participate in the fun when my nephews come over and I worry that they’ll remember me as a lump on the couch, but I should’ve been smarter. I guess all I can do is learn from the mistake and just enjoy watching my husband play with nerf guns with them. That kind of fun is just not feasible for me anymore.

Sigh.

I’ve had to spend much of the last few weeks in bed. I had to stop exercising and my daily walks so I’ve lost much of the strength I had gained. It took me about a week to recover from my mistake but then a severe bout of insomnia and depression took over. I’ve forgotten what it feels like to sleep through the night. It’s been weeks now. Sometimes I get stuck in these insomnia loops that I can't break out of. It's been awhile since I have had one this bad. The irony about insomnia is you think that the more your exhaustion builds, the more likely you'll finally sleep. Nope! It doesn't work that way. No matter how nicely I ask my brain to sleep, it lets me know that it is the boss and does what it wants. 

So this is why I haven’t been posting. I even had to take some time away from all social media for awhile too so I could just focus on surviving. The last three weeks have been a bit of a veritable shitstorm, but I’m trying to remain undaunted. I’ve had rough patches before, even really bad ones like this. I always eventually climb out. It was almost three weeks since I left the house, and I told husband I started to feel like one of those animals that lives in a dark cave for so many thousands of years it eventually loses its pigmentation and sight.

Day 15 Selfie 

The worst part about all of this is I had to miss multiple appointments and the important test I was supposed to do at Stanford last Monday. This test was going to be the catalyst to finally starting the standard immunotherapy used for Myasthenia treatment. At least, that’s what my doctor said. I’ve been waiting for years to finally start that treatment now. It didn’t help my terrible record of showing up to appointments and tests so far this year.

I am continuing to decline overall but I also keep screwing up and setting myself back. I’m sure many of you out there know this cycle: you start to feel a little better, you try to do too much, you end up immobile and back at the beginning. I keep doing this so I’m trying to finally learn from my mistakes and make some changes. Old habits die hard though.

I’ve stopped trying to use my stationary bike. I used to have some success using it and it does help my stamina but the last few times I used it, even when I was having a good day, I ended immobile for a few days. When I’m able to exercise successfully again, I’m going to stick to yoga and my short half block walks with my trekking poles. I was having some success with that. If exercise is only setting you back, then it’s counter-productive. This is what I’m finally learning. Exercise has to enable functionality, not the reverse.

I need to stop trying to do too much on days before appointments. I need to really take the day before to rest so I can show up.

If I do have a moment where the clouds part, the sun breaks through, and I'm feeling pretty good for just a brief moment, I need to not try to do everything I usually can't do to capitalize on that moment. I'm trying to remember that those moments do happen occasionally but they are actually a lie. No matter how good I feel in that moment, my limitations are still the same. Reminding myself of this will hopefully help me just appreciate those moments instead of pushing myself over the edge each time. 

One of my greatest fears in life is making the same mistakes over and over. So I’m really trying to stop asking too much from my body every day and hope we can live in a more peaceful communion.

The last few weeks have been brutal but there have been some bright spots. I try to sit in our little yard when I can. Some days I can’t but when I can I sit out there a few minutes at a time so I don’t crash too hard. It lifts my spirits. 

One benefit of being completely immobilized is I was able to finish two books and I re-watched multiple seasons of Downton Abbey. I also actually made it outside very briefly yesterday. Husband took me to the thrift store around the corner from our house and I got some beautiful framed vintage art. These were absolutely worth pushing myself to finally leave the house again.

My brain is mushy from such little sleep for weeks so this post is a placeholder until I can get some functionality back on all fronts. I have a sponsored post from SaltSticks coming hopefully next week so stay tuned for that. I love their product. I have some other posts I was working on and a few changes in mind for the blog. 

I can feel better days on the horizon.

I hope all of you are doing well out there. 

The Month That Was

Since I didn’t manage to post any weekly updates in February, I’m going to do a monthly review—even though we’re in March now. 

Hello March! It’s great to see you.

-  February was a rough ride. I’m still trying to recover from the intestinal infection that started months ago, and I had to spend much of the last few weeks unable to leave my bed or couch. But I feel like I’m finally turning the corner. I had to cancel my brain MRI at Stanford (this is the third time I’ve had to cancel it), which doesn’t help my terrible record so far of showing up to appointments in 2016. 

Struggling to show up has made the emotional frustration of illness unmanageable. I put off writing this post until I could get my frustration under control. I can manage being bedridden and very ill for weeks on end but when I can’t show up to appointments, manage my care, or accomplish any of the basic things I need to do every day, then the frustration becomes unwieldy. 

The last few days have been better though. We’re having an unseasonably warm patch here in California. It’s hard to feel down when the sun is shining like it is.

- I’ve been very active my whole life and even though my body continues to become more limited, I’m still militant about exercising—to the point that I’m constantly overdoing it. I’m still learning that I can’t do the exercise I want to do. I have to do what works for my body and adapt to its abilities. The last few weeks, as soon as I start to feel a little better I try to get back on my stationary bike and then end up bedridden again. Exercise is essential for managing Dysautonomia and fending off de-conditioning, but since Myasthenia has taken over my body as well, I’m very limited in what I can do. If I push my body even slightly past its limits, the weakness turns into paralysis and my breathing completely shuts down. It’s really not cute.

So I’ve been starting to scale back and adapt my exercise routine. I’ve been doing a mix of simple yoga, pilates, and some of my physical therapy exercises in the morning, and I am seeing results! Usually, on the days I exercise I’m tapped out for the rest of the day but doing these simpler exercises doesn’t completely wipe me out for the day. I’m able to accomplish more.

A few years ago, I started to suddenly have balance issues and the problem, like many of my other symptoms, has only worsened since then. I do the exercises my physical therapist gave me to treat the balance problems but they’ve never helped much. They would only make a dent and wouldn’t have much lasting effect. It’s hard to tell but it seems like doing yoga poses every day actually has. I do the poses between a table and a wall so that I can catch myself when I inevitably fall. I used to do yoga regularly but this is a simpler version of what I used to be able to do. The poses I do that target balance are warrior pose, tree pose, balancing stick, and triangle. I often meditate after I do my exercise. Exercising is working best for me in the mornings right now so I'm rolling with it.

Yoga is definitely not for everyone so if you are considering it I’d recommend talking to your doctors or other medical professionals first to see if it could help you.

Doing Tree Pose like a boss. Like a wobbly boss

-  My improved balance has helped my mobility too. I have had to use mobility aids for a few years because of weakness from Myasthenia, balance problems, and orthostatic intolerance from POTS. Basically, whenever I am upright and moving my body is screaming “WHY WOULD YOU EVER DO THIS TO ME”. Yet, I still push myself to move. I try to get out and walk every day with my trekking poles, which my physical therapist suggested. They let me use mostly my upper body when I walk since my weakness is mostly concentrated in my legs and they give me added stability.

Last week I actually made it farther than I have in many months. I made it all the way to the corner of our street (about half a block). I was starting think I’d never make it that far again but I did! Husband took a picture for me to commemorate the moment. I’ve been walking to this point almost every day since! I'm thrilled.

-Monday was Rare Disease Day, which started initially in Europe but now has become a global event. The definition of a “rare disease” sometimes varies between countries. In the US, it is defined as a disease that affects fewer than 200,000 people. Myasthenia Gravis is considered a rare disease but POTS is considered a “rarely diagnosed” disease. Statistically, 1 in 100 teens are affected by Dysautonomia, but it is much less common to have initial symptoms later in life (which is what happened for me). Since Dysautonomia is an umbrella term, there are rare forms of it that qualify as a “rare disease” such as Pure Autonomic Failure or Familial Dysautonomia. Ehlers-Dalos Syndrome, a rare connective tissue disorder often associated with Dysautonomia, is a rare disease.

Rare Disease Day is a great opportunity to raise awareness about rare diseases since research and treatment options are so limited for these diseases and patients typically must endure many years of testing and even misdiagnosis to finally get a true diagnosis.

I had hoped to bring you information about the event sooner but I’ll have to aim for next year. We still have Myasthenia Gravis Awareness month in June, Invisible Illness Week likely in September, and Dysautonomia Awareness Month in October, but every day is an opportunity to raise awareness!

MyAware Ireland shared this video on Monday with a brief explanation of Myasthenia:

- A few posts ago, I outlined some of my goals for the year and I mentioned that I wanted to work on a few projects with husband, including my mom’s antique armoire she gave me many years ago that’s been sitting unfinished in our garage. A few weeks ago, I went out into the garage and husband had moved it into the middle and he said “let’s make it happen.” 

I can’t remember when my mom bought the armoire but I know I was a teenager or younger. She decided to refinish it and sanded it, but never finished it and decided to get rid of it. Before we moved to Nevada, I told her to keep it for me so I could have it someday. It’s sadly been sitting in a garage unfinished for over a decade but we finally finished it! Husband did about 85-90% of the work, but now it’s sitting in our room and I’m over the moon that it’s finally back to its full glory. I wish my mom could see how beautiful it turned out.

- I was supposed to spend Monday this week lying in the VERY LOUD TUBE for an hour and a half doing my brain MRI, but instead I was home working on recovering from February's douche-baggery. Instead, we played games with our friends. Game time is serious business for me, husband, and our friends. We try to play once a week and have been for years. Now, they move the table to the couch so I can play from there. It’s hard to feel down about life with good friends like this

All my favorite beards

I hope all of you out there are doing well! 

Some Goals for 2016

I meant to get this post up in December or at least a few weeks ago, but this post is a compliment to my post where I outlined what a typical good day looks like. I spend much of my time coordinating my care, resting, and working around my symptoms. I make weekly goals in my planner every week and then prioritize them, always making exercise number one no matter what else is going on that week. The rest of my goals usually involve phone calls, paperwork, appointments, etc. Thus, my life often feels like it boils down to constant management of my own health. I need a reminder to focus on life and my other goals.

I made this list in December and strategically left out my health-related goals because I’m trying to find a way to carve out a life, or a semblance of a life, outside of illness. I would say that the last few years, illness has controlled my life no matter how much I try to make it the other way around.  I like to believe I’m the captain navigating these rough waters, but often I’m really just the vessel plodding along in the storm. I have surrendered to the fact that illness is a constant source of chaos but it doesn’t mean I can’t at least attempt to make a life in conjunction with that chaos. This is what I’m telling myself at least.

My BFF Carrie Anne has an enviable Life List and she inspired me to make one a few years ago. It’s funny; I actually recently went back and looked at the one I made, which is from my pre-sick life, and I put things like “hike Yosmite’s Upper Falls,” “go whale watching,” and “publish more academic articles” on there. Uhhh….not quite. I’ll have to start from scratch at some point on it. 

But here are some goals I think I can manage this year:

1. Get Back to Creativity

Whatever your passion or skills, creating and the desire for self-expression are the essence of our humanity. I have always been artistic but I lost some of that creative spirit when I became an academic and while dealing with illness. I used to play music regularly, even getting paid gigs for weddings or at restaurants. I worked as a children’s illustrator for years at our local library. I was constantly creating and producing. This is my number one goal for this year: do something creative every day.

I’ve been playing my keyboard almost every day for a few months now so I’m on track with music. Even though I cannot perform right now (which was always my motivation to keep practicing), I’m working on learning and memorizing new material and trying to improve. I’m hoping to try to focus more on writing, finishing, and recording my own material. That’s at the top of my list for my creative goals.

I dream of getting back to painting and giving friends and family gifts of artwork regularly. I dream of sitting in my yard and drawing for 10 minutes at a time and taking breaks. Honestly, working as an artist for so many years put a damper on my desire to create my own artwork. As with all creative pursuits, it takes commitment to improve as an artist and develop skills. I have not been committed to painting for many years. But I still desire to do it more consistently.

I have some clear writing goals. I’m working on getting at least one blog post up a week, getting more writing published, and working toward writing my book. I got six posts up last month, so I’m already on my way toward reaching some of my writing goals.

2. Go Outside

I try to remember what pre-sick life was like and what I did every day in those years, and I would not describe myself as necessarily a home-body then. Yet, since I’m home-bound now, I don’t even leave the borders of my own home with any frequency. The boundaries of the world I inhabit now can be measured in mere feet. There is no literal or figurative horizon to look out to and build dreams on. My horizon is now internal.

We live in a duplex that has an enclosed yard and that was the main reason why I wanted to live here. I try to sit outside in our yard every day. It’s difficult during the warm months (which is most of the year here), but I try to time it right each day to get outside even just for a few minutes. I try to walk with my trekking poles regularly (I’ve had limited success with this in the last few months unfortunately). My goal this year is to get outside every day. 

Along with meditation, this is fundamental to my mental health and sense of well-being. Getting outside, even just sitting in our yard, helps me feel like I am part of the world and feel less trapped. I talk to my cats and the birds in our yard and watch the flowers bloom. It’s glorious.

3. Listen to more music

This is separate from number 1. Since I have to spend so much time resting, it’s a good opportunity to listen to music, yet I honestly spend much of my resting time either reading the news, watching documentaries, or staring off into space. I’ve been anxiously waiting for the full swing of the election season so I’m already spending too much focusing on it. I’m not very interested in football or baseball. The World Series or the Super Bowl are barely a blip on my radar. Politics is my sports.

But music gives me more joy than almost anything else, so I would like to disconnect more and just listen. Listen to all the new music from my favorite artists I haven’t listened to yet. Listen to some of my records I haven’t listened to in ages. Just listen.

4. Read more

I wrote a post a few weeks ago that listed the books I had finished in 2015. I finished 20 books but I’m aiming for 30-40 this year. I know I’ll likely never get back to the 50-70 I read when I was an academic but it will feel close enough.

5. See more of my friends and family

Even though I don’t get out much, I see some of my friends somewhat regularly. But I want to see more of them and see more of my family. The last few years have not been kind to my family and our relationships suffered significantly under the strain of my mom’s failing health. I have high hopes that we can start to move forward this year. I want to see more of my husband’s family too, especially my crazy nephews.

I’d love to be able to drive again. That would make a huge difference with being able to see family and friends more often. Hopefully at some point I can do that again.

6. Work on projects with husband

My husband is a builder and maker of things but the times I have participated in his projects have been slim to none. I have a gorgeous 1920s antique armoire that my mom saved for me that desperately needs to be refinished. It’s been sitting in our garage for three years and I can’t wait to see it back to its full glory. It’s a serious undertaking but husband is on board to help with it.

We have some other projects on the table. We ordered a flint-knapping kit last year and have been waiting for some warmer weather to practice making hand axes. We can party like its 10,000 BC and make some prehistoric tools. Sounds fantastic.

This could come in handy in the zombie apocalypse

7. Travel (i.e leave the house for things that are not appointment-related)

I sometimes think about what my life would look like if illness hadn’t taken it over. I’d still be a workaholic and spending much of my time working, but I’d also be playing music and travelling. I have always loved to travel. I honestly cannot remember the last time I left my town for something other than an appointment, even just to go to neighboring towns. One of my BFFs moved to the next town over a few years ago and I still haven’t seen her new place. My sister moved to the Bay Area a few years ago and I still haven’t been able to visit her there yet either. It’s just absurd.

I want to attempt to venture out this year. ‘Travel’ for me doesn’t mean I’m going to travel up the Pacific Northwest (though I’d give anything to do that again). It means going places that are nearby, even just a mile or two down the road, and the excursion NOT being appointment-related. I’m going to actually count any activity where I leave the house that isn’t for some kind appointment as “travelling.”

There are places I really want to go that are not that far from us but would take some serious planning to pull off, including having to stay overnight. I haven’t been to Yosemite in 3 years, which considering we used to go there multiple times a year, is desperately sad. I’d love to take a trip to Monterrey and go the aquarium. We both love the Foothills and had family in Sonora when we were growing up. Ultimately, our goal is to move there, but I’m hoping this year I could pull off a day trip there again. If I can start slowly working my way up to these things, maybe we could finally get back to thinking about our bigger travel plans like visiting my husband’s aunts in southern California again or finally making a trip to Yellowstone. Someday.

8. Meditate more

I had a great therapist when we lived in Nevada who had a background in mindfulness, and she helped me get back to meditating. I used to do a lot of yoga years ago and meditation was always part of that practice. I would like to consistently meditate again, preferably once a day. I have found that morning is the best time for me, and I have actually discovered that it helps to stabilize my heart rate and breathing. I usually wake up with my heart rate around 160 (thanks POTS) and struggling to breathe (thanks Myasthenia), but sitting and focusing on my breath helps to improve these symptoms that are usually the worst in the morning. But more than anything else, meditation offers benefits for mental health. For me, it has improved my anxiety significantly and helped my depression too. When I feel myself starting to spiral out of control mentally, I try to sit still for a few minutes and just focus on my breath. It really helps.

And just for fun, here are some big dreams and goals—some I’m actually working toward and some that are just crazy ideas I want to throw out to the universe:

1.      Finish my album of originals and sell it or make it free online

2.      Write a book (or two or three)

3.      Perform regularly again

4.      Start a non-profit that will help disabled chronically ill patients get access to important resources

5.      Travel to the UK

6.      Be able to drive to my friends/family’s house and be able to drive myself to local appointments

7.      Organize fundraiser events (for Dysautonomia, Myasthenia Gravis, and Alzheimer’s)

8.      Be able to teach in a classroom again (or any capacity really)

9.      Take freelance writing jobs

10.  Have a vegetable garden that I am able to maintain

11. Go camping

12.  Get an MFA or finish my PhD

13. Sell some of my artwork or give it away for free

I don’t know if I’ll accomplish any in this last list but these goals beckon to my soul for completion someday

I recommend making a list for yourself also, making sure to separate the health goals from your life goals. Even as I was writing this, I kept finding myself listing health-related desires. This was a good exercise to try to delineate my own desires from the health-related goals I’m working toward every day. We have to remember to live sometimes, even if much of that life has to be lived internally. There are still universes within each of us that deserve exploration.

The Week that Was, January 15th

What a week of ups and downs! I wrote last week that I was finally having an ok week after months of hanging on by a thread and struggling to move, eat, and function. This week hasn’t been as good as last week but good enough for sure. 

-I mentioned last week that we were going to drive to Stanford for my brain MRI this week. It didn’t happen. I rescheduled it for a variety of reason, but mainly because I didn’t want to jeopardize finally feeling a little better physically. Our last trip there in November wiped me out for weeks. Then the festivities of December wiped me out so I just could never catch up. I haven't met my exercise goals in months. Yet, I feel like I’m making a bit of a turn around finally and I wanted to capitalize on that and get back to exercising. It was probably the wrong choice to not show up, but I really needed some time. Also, I have a few local appointments next week I must show up to and a trip to Stanford could risk not being able to show up. My husband and I were so relieved not to have to make the trek there this week and stay the night. I was able to get out and walk instead!

- I see my GI doctor next week for the first time in a year and a half. I need to talk to him about the intestinal infection, constant pain and nausea, struggling to eat, and not being able to put weight back on. But really I’m going to tell him, “eating food is important and everything but what do I need to do to be able to eat Girl Scout cookies when they come in a few weeks?” That is priority #1. 

-My next article, "Why the Fight for a Diagnosis Matters," at The Mighty is up and you can read it here. I wrote about the battle of living on the Hamster Wheel of Diagnosis and why the fight to finally get a diagnosis matters despite the exhaustion and invalidation that can come with it. Most people do not know that the typical time to diagnosis can be six or more years. Most people don’t know that being told “it’s all in your head” by countless doctors is an almost universal experience for people with Dysautonomia and other invisible illnesses. That’s what I was trying to give voice to in this article (and on this blog).

-There was a controversy recently over at The Mighty and some disabled writers have decided to no longer write for them, which I think is a great loss. You can read a bit about it here and you can follow the #CrippingTheMighty hashtag on Twitter to read more responses. I think overall the comments were justified, it started good dialogue between the writers and editors, and The Mighty has made some changes in light of what happened. I decided to keep submitting writing to them because I think it is still a good resource for voices who discuss disability and illness. 

- I celebrated not having to drive to Stanford by finally getting my flu shot. Excitement! Husband works at Costco so he worked all morning, came home and picked me up, and then we drove back over there (that dude is amazing). He got to show me what he has been working on recently and I got to sit on the couches they have. I love couch season at Costco. It’s a nice way to remain in my natural habitat outside of home.

-I haven’t discussed this much on the blog, but I’ve been fighting a very exhausting, protracted battle with the insurance company over my disability insurance. As a public educator, we had to pay into a private system. They awarded me a few months of short-term disability at the end of 2014 but denied my long-term disability and the last few months of my short-term disability. I have not received any benefits since January 2015. I’ve sent them over 100 pages of medical documentation, including letters from my doctors, but they determined that I was not “technically disabled” and am able to do all of the “extensive walking and standing” required for teaching. You could almost laugh at these words.

I have appealed multiple times. My long-term disability case was a lost cause. That part is officially over. But I’ve been trying to find a lawyer to help with my last appeal for my short-term because I have no chance of winning without legal help. Finding a lawyer who will take a private disability case is nearly impossible. So few of them will. Many of my conversations with local law offices went like this:

            Me: “Hi. I was wondering if your law office takes private disability cases?

            Them: “No” *click*

            Me: "Well have a good a day anyway!"

A law office in San Francisco considered my case but months later decided not to take it. I then found a law office in Texas that considered taking my case. They were incredibly kind and easy to deal with and contacted me every week to keep me updated. A few days ago they informed me they ultimately were not going to take my case. I was given six months by the insurance company to appeal the decision but being ill, my mother passing away, and the struggle to find a lawyer ate up all of that time.

I submitted a one letter appeal this week one day before the deadline for my very last appeal. I’m trying to decide if it’s worth trying to find another, third lawyer. I’ve been dealing with this since I stopped working in August 2014 and this battle has caused tremendous stress for me. I've wasted so much valuable energy on this. This is the thing with the American for-profit insurance system: the sicker you are, the more benefits you need. It is a constant fight with insurance companies to get benefits and access to care. It is the job of insurance companies to maintain profits and deny benefits to protect profitability. It’s not personal. That is just how the system works.  

I long for this particular battle to finally be over with. I’m going to try to apply for state disability next, but I will likely be ineligible since I never paid into social security as a public educator. That’s the next battle. The prospect may be that not only can I not work but I cannot even get disability payments to help support my medical costs at the very least. This entire process has broken my spirit a bit. It has definitely had a physical cost. And I’m not alone. The struggle to get access to benefits and care is a struggle for many with chronic conditions.

I should've put a handful of glitter in the envelope when I mailed my last appeal. That would've felt like sweet justice.

-Husband and I left the house to go to the thrift store around the corner yesterday. Thrifting has been one of my favorite activities since I was in high school, and it was so great to get out. Oh, the benefits of doing a little better! This particular store is not very accessible and is really difficult to navigate in my wheelchair but I still like to go when I can. We only stay for a few minutes usually before I start to crash but I’ve gotten really good at making a quick of survey of everything to find some treasures before we go.

-My sister-in-law and baby nephew stopped by for a visit a few days ago. Look at all of this handsome.

-My daffodils I bought with my mom a few years ago have already started to sprout. I can't wait to see them bloom. They are my favorite flower. 

-What terrible news this week that we lost two brilliant souls, Alan Rickman and David Bowie. We watched Labyrinth and one of the Harry Potter movies this week. I have the Harry Potter movies memorized because I’m an unabashed Potter obsessive but it’s always great when husband wants to watch one with me. Rickman steals the show in all of the films and played Snape, the most complex character in the series, brilliantly. What a loss of a great talent.

How do you choose a favorite David Bowie song? It’s so difficult. But this one from Labyrinth has been one of my favorites forever and I learned it years ago. Sadly, I never performed it. It's such a gorgeous song. 

I hope you all had an ok week!