Thursday, April 28, 2016

Surviving the Worst

Well. I’m slowly climbing back from the worst rough patch I’ve ever had, but I’m here. I’m writing. My arms work well enough to type again. This is progress.

From the last few posts, you can see that the last few months have been one long rough patch, but it took a sharper turn the last week. The thing with experiencing the worst is it’s like a nightmare taking tangible form. The world drains of color. Nothing brings joy or relief. I couldn't see the other side, and it felt like I would never climb out.

But I am getting to other side.

I’ve had some really severe insomnia for about a month and a half. I am a lifetime insomniac and go through periods of not sleeping well but this was different. I was only averaging 3 hours a night and some nights, I only slept about an hour, long after the sun came up. The thing with illness is sleep is the center which all forms of symptom management orbit. If you don’t have sleep, it doesn’t matter how much you rest, eat well, exercise, etc. Without sleep, everything else is pointless.

I tried all my usual tactics, including changing my sleep medication. But the reason I was having such a difficult time sleeping is I was having to spend a good portion of my time in bed during the day and I was constantly waking up in the middle of the night because I wasn’t breathing. The latter is not an uncommon occurrence but the less sleep I got, the worse my breathing got and the more time I had to spend in bed. It was an unending cycle I couldn’t break.

I don’t know how people who have to spend all of their time in bed do it, but being bedridden is always a ticket to insomnia-ville for me. I also kept over-doing it as always and making myself bedridden again.

I did manage to make it to my pulmonary function test two weeks ago though. I’m hoping to write a post about it since it’s a standard test for Myasthenia. It’s a brutal, exhausting test that includes such exciting activities as breathing into tubes, hyperventilating on purpose over and over, and getting locked in a glass pod. It was nice to show up though and it’s the only test I’ve made it to this year, so it feels so good to check it off the list since I won’t have to do it again for another year!

But I didn’t rest properly after the test and ended up bedridden and back at insomnia-ville again.

But then my body had had enough and my muscle weakness turned to paralysis. Paralysis can come at any time with Myasthenia but this was the worst bout I’ve ever experienced. I couldn’t get to the bathroom without help. My husband had to push me around the house in my wheelchair, two thresholds I have been dreading and hoping wouldn’t happen for a long time or never.

We made arrangements to go the hospital but I had my husband call my doctor to see if that was the right choice. My doctor said that if the paralysis entered my respiratory muscles, then we needed to go. Even though I had little use of my limbs, I was actually breathing ok, for me at least. A healthy person would still assume they were dying. Going to the ER is stressful and offers serious risk. I knew I needed sleep and rest and I was not going to get either of those there. Also, my doctor has still not authorized immunotherapy—steroids and IVIG—for me, which is standard treatment for Myasthenia. I really don’t know what they would do for me at the ER. So I pushed through it. Survived moment to moment. 

It’s a skill I’ve gotten really good at. I’m an epic level survivor.

I haven’t had to spend any time in bed the last three days. The paralysis is starting to subside and I’m sleeping better. I don’t know if I have turned the corner yet but I feel like I’m getting there. The world has some color again.

I’ve been practicing what I call “militant resting,” moving as little as possible, focusing on my breathing, and giving my body the patience and care it needs. Now if I could just stop over-doing it and let my body recover, that would be great.

I missed my MRI at Stanford again and sent a message to my doctor asking for another option, hopefully to do the MRI locally since this is the 4th time I’ve had to cancel it. I have another appointment there in two weeks. I really need to improve so I can finally show up.

I got my fancy, new record player that was my gift to myself for winning my short-term disability case and I’ve been lying on my couch listening to a lot of music, many of my albums I haven’t listened to in a long time. Music the best kind of medicine; it can be auditory resuscitation. As something fun and uplifting, I've been working on taking pictures of some of my vinyl collection I’ve been accumulating the last few decades. If you want to see it, follow me on Twitter or on Instagram.

It feels like there are shades of normalcy in life again and I'm working hard to get there. My husband has been the unsung hero in this awful saga. He is always the one who deserves all the glory. The last few months have easily been harder for him than for me since he has to care for me, while working and doing everything else. This was the first time I have needed help with every task so I've been working hard to get back to some functionality again. I'm definitely getting there. We survived it together like we always do and watched all of "Cut Throat Kitchen" while I rested.

Since my condition continues to decline and I've struggled to show up to appointments and tests to finally make headway toward treatment, I have this overwhelming sense of dread and fear. What transpired last week did not help this. But I have decided that I won't live in fear of the future and what may come next. I want to try to enjoy each day--laugh with my husband, listen to music, watch the birds in my yard, do everything I can do enjoy each moment.

When I was feeling at my worst, I wrote a poem to remind myself of this:

I refuse to walk in fear
To tread in trepidation
To worry what each corner brings
But instead
To wake each day to a fresh start
And face that possibility with an embrace
Each corner is a new chance
Something to learn, something to fight, something to laugh with
But I refuse to walk in fear toward it
Not anymore 
Instead, a gesture toward hope

I hope all of you are doing well out there. I'm hoping to get back to regular posting again soon. Peace and love to you all :)


  1. I'm so sorry you've had such a difficult time. You are truly an epic level survivor. I admire your strength. xo

  2. Thanks for sharing your thoughts and such a personal story with your readers. I was really happy to find your blog and I know there are so many people out there who can empathize and relate to your story. I know there is nothing out there that can get rid of the pain completely and as a chronic pain sufferer myself I am just constantly searching for way to alleviate my symptoms. I wanted to recommend a book that has helped me immensely called “Walking Well Again: Neutralize the Hidden Causes of Pain” by doctor Stuart Goldman ( The book is for absolutely anyone who is looking to understand the root cause of their pain better as well as how to reduce the pain without having to partake in surgeries or take medication. I find this to be so important because medication is not really fixing the problem, just taking away the pain. He also provides many case studies and examples, which are so helpful because you learn what has worked for others who suffer from a pain similar to your own.There are over 80 personal success stories within the book and it is inspirational and a must read. Hope you will check it out

  3. This was so hard to read because I felt so badly for you. I can relate, of course. In addition to sleep, my health orbits around how bad my PTSD symptoms are: the worse my health, the worse the PTSD, and then the worse my health. So, for example, if pain allows, I sleep, but I have haunting nightmares, which cause my body to tense up, which increases pain... You get the idea. Life can be on hell of a challenge, eh?

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