The moment I wake up is the darkest moment of my day. In a blink I'm conscious and my first thought is "ugghhh". I feel my worst in that moment. I roll over and turn off my BiPAP, the loud beeping signals my cat that I'm awake and ready if she wants pets. I take my first round of meds that have to be taken on an empty stomach and then lie in bed for a half hour and read social media and the news. I need to know immediately what's happening.
Usually I'm checking the news about politics. It's election season. My brain is always buzzing during this time. I check polling data obsessively and read a large variety of political coverage. I also follow NCAA gymnastics this time of year.
But now when I wake up I have to remind myself "oh yea. None of that is real"
These are strange days.
A global pandemic wouldn't have been on my betting list for all the ways 2020 could implode. It's been over 100 years since we've had a global pandemic on this scale. No one alive has experienced anything like this before.
For us personally, everything feels oddly similar to what our lives were like before. I've been homebound for over five years now. I've been "sheltering-in-place" before it was cool. My usual endless schedule of appointments, tests, etc is non-existent now, which is actually a welcome relief honestly. I'm tired of weekly appointments. They take up so much my energy. Husband works at Costco so his job has become much more stressful but he took some vacation time the last few weeks so we could quarantine and buy a little time during what will hopefully be the peak of the pandemic..although now I'm concerned we haven't reached that yet.
Our life has actually been a stark contrast compared to what many are experiencing right now. Things are going a little better for us than they have in awhile, and it's a strange dissonance over this global crisis. We changed my IVIG schedule to every two weeks so I'm not crashing so hard in between infusions. I was hospitalized every other month last year struggling to breathe on my own. Almost every time was because I couldn't make it between infusions.
We were able to pay off all our debt and medical debt. This may be the first time in 20 years of being together we are debt free. In another year, my student loans will be discharged. Everything feels like it may be possible for the first time in so many years. But the world is on hold right now.
After waiting a year, I finally saw the neuromuscular specialist at Stanford in January and a neuropulmonologist. After the terrible doctor at UC Davis, my canceled surgery, the endless hospitalizations, it was nice to finally see some real experts who are invested in my improvement. They echoed what many doctors have told me over the years: I have Myasthenia Gravis but the severity of my respiratory symptoms and mobility issues don't fit with MG and none of my test results explain them either. I always have other symptoms like a balance disorder that have never fit with any of my diagnoses either.
The neuropulmonologist actually told me "you may have something no one has ever heard of, " which is gut-wrenching to hear from an expert at one of the best research hospitals in the world. I appreciate their honesty and their acknowledgment this may be impossible. Instead of blaming me as the patient for the lack of explanation, they've been investing in looking for other potential diagnoses.
We were at least. Then COVID-19 put that on hold indefinitely or even permanently.
I did a variety of tests at Stanford at the beginning of March. Getting to Stanford is difficult for me so we stayed multiple nights in a hotel, so I could spread the tests out over multiple days. Those few days we were there were when the world changed here in the US. A national emergency was declared. Between the tests, I watched the news endlessly in the hotel. The last day we went to the hospital, the hospital was on lockdown and everyone was being screened before they were allowed in. There were police at the entrance.
The world hasn't been the same since.
I was in really rough shape after all the traveling and tests and felt like I was heading into another exacerbation. I was afraid I was going to end up in the hospital after all of it, which is the last place I need to be right now. I completed all the tests except the pulmonary function test (the hardest one), and we canceled our last night at the hotel and headed home early.
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| Resting, listening to the news in the hotel |
In the end, all the tests I did were "normal". Every pulmonary function test I've done over the last three years shows the same results (my lung function is fantastic and my respiratory muscles function at just 30%). I can't imagine doing another PFT would've been any different and I told the neuropulmonologist that after we returned home. I did not have any strength left to do that one.
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| Until next time Stanford |
I am forever cursed by normal test results. All that effort and resources for that trip and the tests showed nothing.
Yet, I've been very slowly increasing my immunosuppressant to a max dose since my first visit to Stanford in January and with the increased frequency of IVIG, I've been more stable. It's been almost five months since my last hospitalization, which is incredible compared to last year. I'm hoping I will continue to improve. I even attempted trying to walk with a cane again, my second attempt in the last year. I'm still working on walking again. Here is the video:
It's strange to watch the public struggle with isolation while so many of us who ill live this every day. I swear no abled person better ever say "it must be nice to be home all the time and not work" to any disabled person ever again after this.
It's exhausting to see so many people, even people I know, view this as overblown. It's exhausting to have to explain to the abled that you can have the virus and be asymptomatic, potentially infecting everyone you come in contact with. It's exhausting to explain how unlikely it is I would survive this virus
This will be happening for longer than the next few months. The Spanish flu lasted a few years, and the second wave was the most deadly. Those of us in the chronic illness community are going to need to be masked and vigilant for a long, long time.
Even though things are bizarrely going ok for us, we're trying to stay in tune with how much others are struggling right now. We've been trying to do our part to help family, friends, strangers. Since husband works at Costco we've been a toilet paper supplier for people. After giving our mail man a giant pack, I think we're officially his favorites.
These are terrifying, uncertain times. I feel the weight of it. I'm trying to cope the same ways I always try to cope: try to carve out joy where I can, find ways to laugh, try not to get trapped in anxiety about chaos I can't control. We've tried to be vigilant about protecting ourselves, especially since I'm high risk. We'll continue to do that for a long time.
In the meantime, I hope everyone can do the same. Find ways to laugh, smile when you can, hunker down for the long haul.
This is one of the few times in modern history our species is living a through a universal experience where everything is at stake--one of the few times we keenly feel our responsibility to each other. I hope a better world comes from this. I hope I survive to see it.
I wish everyone the same
