I am happy to put 2020 behind me, and can even say some really good things happened, including a new son in law and grandbaby on the way.... However who knew back in February what the year had in store... I got a sneak peak as I tutor Chinese students and saw their schools closing down before it came here. However, nothing could have prepared me for the vault of emotion this year would bring. Having a multiple chronic conditions in addition to being on medications that compromise my immune system a pandemic was greatly concerning and frankly not in my agenda! I planned for things like visiting Disney while struggling to walk some days, but not for cancelling the whole trip because Disney was shutting down. I planned for a new type of holidays with half the kids being adults and the other half teens...but again not for multiple holidays full of masks and no hugs! But I think the thing I was least prepared for was the lack of interaction...normal everyday interaction without the fear of compromising my breathing. For my personal situation I can deal with fevers and stuffy noses (although I HATE them!) but Myasthenia Gravis affects the diaphragm..and basically when it flares I could go into a crisis when my body cannot get rid of enough carbon dioxide. If this were to happen they intubate you to help you breathe. My neurologist previous to the pandemic had started me on multiple medications because I have what is called bulbar weakness and trouble swallowing and I have to be careful to not get any food or liquid into my lungs causing pneumonia. Because pneumonia puts pressure on the diaphragm which causes weakness which causes MG to flare and quickly can turn critical. So I have had to be abnormally careful, that said I haven't gone to lunch or coffee dates with my friends, I haven't been to church in 10 months, I haven't gone grocery shopping (although now that I have discovered pick up I might now go back...) I haven't had a date with my husband, I live the life of my dog...eat sleep and go for a ride in the car....and I know so many others share my story.
That said...as time has gone on I have struggled with boredom, loneliness, fear of missing out, fear of the world moving on without me, doubt in my faith, exhaustion, frustration, anger, disappointment... all emotions...and part of me felt like a bad person for my feelings...like if I were stronger, or people have it worse then me, or could be worse....which on some level is all true...but as the months went on I also found it more difficult to concentrate on anything and felt so tired....I felt defeated as the rheumatoid arthritis that was in remission came back on and since July I have hobbled about. Fast forward to a month or so ago...I have a visit where the rheumatologist says lets get you back on some ra meds and as he is running the bloodwork he finds some wonky results. He sends me to a hematologist...which didn't know was also can oncologist and with my family's cancer history just about sent me down a hole of depression...When the red hot chili peppers make you cry you know you are low low low.....He ran some bloodwork mentioned it could be this chronic blood cancer. I didn't want to tell anyone because I didn't want to put stress on a stressful holiday, I only told a few people...but today I got all the results I am very very anemic but nothing else!! Turns out I have had very low iron for a long time and its pretty much depleted....the exhaustion, the lack of concentration, the emotions........can't blame it entirely on this of course, but I walked out of that place with a huge sigh of relief. Sometimes we think we are causing our own sadness...depression, frustration, but I am learning on this path that so much of it is out of our control...sometimes its medical, sometimes it unexpected pandemics...sometimes its the stupid choice we made (been there!) But it was a wake up call today to remember to now beat myself up for having some tough weeks....IT IS OK TO NOT BE OK...just as long as you hang in there and know it won't last forever....Thankfully I have an amazing husband, kids and friends who have my back. Community is vital....even when its distanced.....I miss my old life pre pandemic, but I also am appreciating my life more and more because I can't wait to rejoin it fully!! So anyone else in the low places, lean on me....I can carry you at least a few feet!!
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