05/15/2024
For the past 2.5 years I've been struggling. Ever since I was hospitalized for covid triggered thyroid storm my health has been a roller coaster. Physically a domino effect occurred and underlying problems, hereditary, congenital and otherwise which may or may never have surfaced organically were triggered in full. My teeth began breaking and falling out, resulting in full mouth extractions and a set of dentures that I dislike the feeling of so much that I never use them. My thyroid is still uncontrolled despite daily medication and the continual care of an endocrinologist, surgery may be the recourse here.
Multiple discs in my neck, mid and lower back began bulging/herniating at once, combined with spinal arthritis, resulting in years of physical therapy, repeated ongoing injections in my spine and neck, muscle relaxers, pain medications, doctors appointments and testing, testing, testing. Some of those days I couldn't get out of bed, some days I could barely walk, sometimes I needed a cane, some days I could not even wipe myself without triggering flank spasms.
I've gained weight, between all the medications and steroids I am on and not being able to move I have gained around 50 pounds. Long Covid and PICS contribute to, if not outright cause, each of these things, while also gifting me with varying neurological difficulties including formication, paresthesia, nerve pain, brain fog and memory problems. Anxiety, depression and PTSD are new friends as well.
I feel like a totally different person today than I was when I got sick. I guess that makes sense, my reality is very different, I'm quite differently abled than I was. At times I feel I'm a stranger in a strange body. I experience deep grief about this sometimes, mourning myself. I'm still learning this new me, how best to love and support myself through so many changes.
I am so incredibly grateful for my rock, my safe harbor, my sun, my goddess, my wife Jen. Through it all she has supported me, fed me, mentally, emotionally and often physically in the most basic meaning. I couldn't drive at all for about a year and a half because I couldn't turn my neck, she drove me to and from physical therapy daily. Every single doctors appointment, she attended. For almost 2 years I needed my back massaged at least twice a day with medication, she never once minded.
When I can't walk, she physically supports me. Can't wipe my ass, she installs a bidet. Can't move in pain, she does whatever she can to make me comfortable. Can't love myself, she loves me enough for us both. I am eternally grateful for your compassion, kindness, grace, beautiful heart and love in action a chuisle mo chroí. The gift of your love is the highest honor and greatest privilege of my life.
We never imagined we'd be dealing with chronic illness, pain or disability (though for those familiar with HD and GK my sun sign is 36.5 and my IC is lax of the plane so maybe we should have?), but God never gives you more than you can handle right? So far so true.
Not all of this time has been traumatic. A year ago I underwent top surgery (double mastectomy) and that has been the best thing I have ever done for myself. I love not having breasts. I love not having their weight hanging off me. I love not having b**b sweat in the summer. I love being able to be topless outside if I choose. I love how my shirts fit, though the breast weight seems to have migrated down toward my gut again, haha. I love breast cancer being much less of a concern. I love being a gender nonconforming individual. Embodying that oft mentioned spice of life.
Things are getting better. The combination of all modalities, procedures and medications are working together to bring my life on the pain scale from a typical daily 7-8 to a typical daily 4-5. I have bad days less often. My mobility is slowly but surely improving, I can stand, walk short distances, turn my head and drive again. I'm working on treating my anxiety and PTSD.
We'll be in Indiana next month for the summer-on. Which means lots of time and cuddles with my sweet, handsome boys and more visits with family. A lack of triple degree heat hopefully and fall. I love the desert but I've missed fall. Overall, I'm excited to see what the next 2.5 years has in store with my beautiful bride by my side.
He, that hath the steerage of my course, direct my sail.
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