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! 

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!

Appointments, Pennies, and Water Skis on Fire

I've been meaning to discuss the last specialist appointments I had this year for awhile now. 2015 was another year on the Hamster Wheel of Diagnosis and I’m headed into year six running on that wheel. I feel like I’m closer to more answers now than I was a year ago for sure, or I’m just getting more comfortable in the grey area. Sometimes it’s hard to tell. I’m going to review a bit the results of those appointments so I can sort it out in my head.

I saw my neurologist at Stanford in early November and it had been about 6 months since I had seen him before that. When I saw him in May, that was probably the worst appointment I’ve ever had at Stanford. He was running behind that day, he gave me a very cursory exam (he didn’t even have me get on the table), he expressed his frustration with my test results and my “subjective” symptoms, and then rushed out 15 mins later. Seriously disappointing. The appointment was such a disappointment that I debated not going to my appointment in November. Going there is becoming more costly and more exhausting. We have to stay in a hotel now and decent hotels in that area don’t exist under $200 a night.

But if you want a diagnosis and treatment and to get off the Hamster Wheel someday, you have to play the game. So I went to this appointment, and I’m glad I did. This appointment was a significant improvement. He had recently lost his nurse he worked with for years (who I had built a good relationship with) and his new PA spent about an hour with us before he came in. I was pleasantly surprised that she had already read extensively about my health history before she came in and she listened patiently as my husband and I described my symptoms. She did a careful neurological exam.

In many ways, getting a neurological exam is similar to a sobriety test (I imagine since I’ve never done one. I’ve never even been drunk). They shine bright lights in your eyes, ask you to walk in a straight line, ask you to touch your nose with your eyes closed, stab your feet with sharp objects and check your nerves, etc. Maybe they don’t do the last one on a sobriety stop. It’s a long process and once my doctor came in we did most of the exam over again. The appointment lasted about 2 hours, which is the longest one I’ve ever had there. I finally got to show him the extent of my mobility issues, weakness, and that my right leg has lost most of its functionality.

They both acknowledged the extent of my mobility issues when I showed them and they said my exam findings matched my “subjective symptoms,” which was a nice turn around from the last appointment. In some ways, for what it’s worth, I felt vindicated.

The last few years I’ve been living with incredible frustration because I felt like my neurologist and some of my other doctors privileged all the inconclusive test results over my voice and my explanation of my own experience. I started to feel like I had no control over the narrative of my own body. I was no longer an authority on my own reality. The constant testing and inconclusive findings have been an impediment to treatment. When I saw him last month, he explained why he has been relying on test results and admitted that the test results would probably never be able to objectively describe my symptoms. I had planned on having a long talk with him at this appointment about the fallibility of test results and then he discussed it with me without me even needing to mention it. 

He said Myasthenia tests can’t find all the antibodies that would identify the disease. It’s rare to find a doctor who will admit to the fallibility of Western medicine in diagnosing and treating rare conditions, and I’m thankful that he finally had this discussion with me. I'm not sure I got an official Myasthenia diagnosis at this appointment, but all of my other doctors are using that assumption.

He also mentioned that my low copper is very troubling. I first saw him way back in 2012 and he tested my copper then and it has always been low, sometimes very very low. Since 2012, I’ve taken copper supplements every day, which you can’t even find in health stores. I have to purchase them online. My results are always low and while I was there, he tested my copper again. Despite upping my daily dosage of copper the last year, I’m still way under the normal range. 

He said that this acquired copper deficiency could be either at the root or at least a major factor in all of my symptoms and that copper deficiency is extremely rare. I kept thinking “Did we find The Cause? Did we finally find Sasquatch?” I guess we’ll have to see if that ultimately is The Cause. I have to see a GI specialist at Stanford to identify why my body won’t absorb copper, which annoyingly is essential for the nervous system to function. 

He noted that my nerves, which are usually less responsive in neurological tests, were hyper responsive this time. He said that should be the opposite with copper deficiency and in an off-hand comment said he would probably discuss me at a conference.  

I've finally leveled up to being a case study. I will be famous for all the wrong reasons.

My best friend Carrie Anne joked with me that at least my diamond and platinum levels are normal. Those would probably be more expensive to treat than copper. If only eating pennies would solve my problem.

Before I left, he set a plan in place for the next few months: see a GI specialist to finally get my copper levels within normal range (and discuss my other GI issues related to autonomic dysfunction), do another brain MRI, do another Single Fiber EMG, and then hopefully start an immunosuppressant and IVIG (standard treatments for Myasthenia that are also very risky). 

When I did a Single Fiber last year, it was the most unpleasant test I’ve ever done. They have to place long needles in your body (each one for 20-30 mins or so) while you flex slightly and move the needles around to get a reading from the muscle fibers. It’s a more sensitive version of a regular EMG and incredibly painful. I was convinced by the end of the test that they had sprained my ankle. Luckily, once all the needles were removed, I was ok. The test took about an hour or more, and when it was over I swore I would never do that again. I also have to stop taking Mestinon to do the test, which is the worst part since I’m dependent on it to breathe.

He is concerned my insurance won’t pay for IVIG unless I do another one. He joked with me that "doctors don't get to treat patients anymore. Insurance companies make all the decisions." Anyone in the trenches of Western medicine will know this to be true. Insurance companies increasingly come between doctors and patients, making the decisions and deciding our fate. Alas, I will enter the torture chamber for another Single Fiber again early next year. We’ll probably have to stay multiple nights because I will likely not be able to make the trip home after being stabbed while not being able to oxygenate properly. Should be a blast!

Some people go on vacations. I drive far away and pay a lot of money to get stabbed repeatedly. 

As we discussed the extent of my mobility issues, he said that neither POTS nor Myasthenia could explain the rapid loss of my mobility and that perhaps I have a “movement disorder as well.” I almost burst into tears at the moment. The prospect of having to get another diagnosis is too much. It’s only a possibility so right now I’m not thinking about it. I'm bookmarking that comment and putting at the back of my mind right now.

The trip to Stanford wiped me out more than any other trip we’ve ever taken there. That trip, which seems so simple, is getting more challenging. But I’ll keep powering through because that’s what I have to do. There’s a Mexican restaurant there that’s right next to our favorite hotel (when we can get a room) and they have the best tortilla soup I’ve ever had. That’s my happy place and motivation.

When I recited everything to my local neurologist who I saw two weeks later, he shook his head as he listened. He said there’s no way that I could have such a mix of incredibly rare conditions (POTS, Myasthenia, Copper deficiency, etc.). He is convinced that there’s a label that would explain everything. I’m sure there is. The problem is I’m not sure that label exists, as well as the diagnostic tools to explain that label as well. I’m starting to wonder if that label will not exist during my lifetime. When I got ill after turning 30, I had never expected to go full unicorn. I never meant to reach such levels of absurdity of being a special snowflake.

I had to get a new local neurologist this year and I really like this new doctor. After we discussed my symptoms and potential treatment plan, he joked with my husband and I about the most absurd new ICD-10 codes used to label medical conditions that went into effect this year, including “Struck by an Orca.” We left the appointment laughing. I found a website where you can buy a book with some of the most hilarious ICD-10 codes in illustrated form. For the spoonies and medical professionals out there, it’d be a great gift. 

Here are a few:

Yes. There's a separate code for the second encounter

How unfortunate does one have to be to quality for this one?

Who hasn't been hurt by falling books or pulling a muscle from focusing too hard while reading at the library?

After my appointment with my local neurologist, I saw my pulmonologist and got to tell her about my summer of desperately seeking oxygenation. July-September I was barely able to breathe and had to use my rescue inhaler (on top of my steroid inhaler I use every day) constantly. Thankfully by the end of October, I’ve been breathing better consistently but still using my rescue inhaler essentially every day. She thinks that when I finally do start immune therapy, I will likely start breathing better since Myasthenia is the culprit. I have to do another pulmonary function test again next year as well, which is also incredibly unpleasant. Husband will at least get to have a good laugh again as I huff out my lungs in a space machine.

So early 2016 is shaping up to be blast with the Single Fiber, another pulmonary function test, and MRI. Let’s throw another Tilt Table Test in just for fun!

Along with other appointments, November wiped me out and I’m still recovering. I’ve had a month now of severe weakness and paralysis from the Myasthenia and had to stop exercising for a time because using the muscles only makes the paralysis worse and then I can’t get around my house. But last week I started being able to go on my very short walks with my trekking poles again and exercising a little.

It seems like every 2-3 months, I have a very bad patch where the weakness and paralysis is so bad that I’m bedridden and can barely move. My last one was in August, so I guess I was due. This time around I tried to be smarter. Usually when it sets in, I start pushing my body even harder to move, which only makes it worse and then I struggle to do important things like brush my hair or bathe. This time I let Myasthenia win for a bit and tried not to push my body (at least not very much) and I wasn’t bedridden much through this one.

It disturbs me this patch has lasted over a month, the longest by far. I’m always afraid that these patches will continue to get longer and I’ll have to start using my wheelchair to get around my house. I’m holding fast to the mobility that I still have. I need a wheelchair most of the time when I leave the house but I can still get around my house without aid much of the time. I want it to at least stay that way. 

Despite the rough patch, I’ve played at the assisted care facility where my lived twice now. Even with the weakness in my upper body, I can usually get my arms and hands to function enough to play. I made it to my husband’s birthday gathering and although I made the huge mistake of not taking breaks during the party, we had a great time. I did some artwork as a gift for a friend. Not bad for being a weak, hot mess.

My BFF and sister in music Melynda and I playing at the care facility for the residents

I’m looking forward to the holiday gatherings the rest of the year.

I canceled almost every appointment this month to conserve energy because being able to participate and see my friends and family this time of year is more important than being on the Hamster Wheel of Diagnosis right now. The Wheel will be waiting for me in January and I’ll begrudgingly get back on, but right now I’m trying to have a life. Or at least pretend for just this brief moment in time.

Right now, that’s enough for me.  

I’m thankful to have the team of doctors I have now. It took a long time, but I found a good team. I had a lot of appointments this year but I was lucky I only did a few tests over the year. I had a long stretch where I didn’t have any appointments, and it was right when my mom was declining, which made dealing with that easier. Fate was looking out for me then.

I’m feeling hopeful that in 2016 I could start a new treatment plan. If I’m doing better, maybe I can get some of my independence back, start driving again, and start thinking beyond that (like working or volunteering). I don’t want to get too far ahead of myself, but I am hopeful. Getting some of my independence back and playing music again are my ultimate goals. 

In many ways, I feel like despite my limitations I need to try to live the fullest life possible not just for myself but for my mother as well—for the life she was denied the last few years. Sometimes, hope is the only thing that is tangible in an uncertain future. In the meantime, as I make the most of life right now and wish for a better tomorrow, that’s what I’m holding fast to. 

My wish for myself, for you, for all of us in the coming year is health, happiness, and continuing to avoid injury by flaming water skis or orca attacks. We deserve that much at least.