“I’m not dying, I’m just really uncomfortable” has become my most common response when close family and friends ask how I’m doing.
My physical and mental health dipped to an all time low over the last year and it is truly a miracle I just might live to see 37. I was in so much physical pain, so constantly fatigued that I couldn’t function and had to drop out of ASL classes. I would go to work, come home, pass out and wake up 12 hrs later to my alarm, in my work clothes from the previous day, only to get ready to head back to work. My mental health, which is honestly already unstable, was deteriorating to an alarming rate and I started making plans to end my life because I just couldn’t take it anymore. Come to find out, I just had a ton of medical issues that had gone undiagnosed and untreated for so long that my body was crying for help.
Anyhoo, the bottom line is that I’m really not dying, just very uncomfortable. I’ve learnt that I’ll have to be that way indefinitely but with proper medical care, the discomfort will mostly be mild, occasionally moderate and rarely severe. My preference is to get a return envelope to send this body back to manufacturer due to structural issues but my doctor says it’s doesn’t work that way.
From the top, the wires in my brain don’t fire right and I have declining hearing loss in my right ear. The last test in 2018 showed over 20% hearing loss. It has gotten worse since then and I’m afraid to go back for testing because I didn’t like the options I was told I would have if it continued to decompensate.
I also have a blood disorder, Thalassemia, due to tiny red blood cells that don’t carry enough oxygen through my blood. This is the culprit and cause of my fatigue, untreatable anemia, lightheadedness and shortness of breath to the point of passing out sometimes (when I overexert myself or when the air is thin) etc. My caregivers failed me in childhood because I would report these symptoms and they would color me a hypochondriac. Eventually, I just assumed what I felt was either normal to everyone or normal to skinny people. On my worse days, I internalized it as me being lazy. I learnt to live around the symptoms without really knowing what I had going on eg I stopped running, I take frequent naps daily, avoid saunas, exposure to high elevation (a trip to Denver almost killed me) etc. I’m also having to unlearn minimizing my symptoms - it took my doctor asking me to breakdown what I call lightheadedness before I realized and agreed that I experience shortness of breath!
Moving down, I have a septate uterus (in layman terms, my uterus is split in 2 and more the shape of a heart than an upside down triangle). I also have 2 cervixes and a shit ton of fibroids that have caused me to officially have a protruding belly. I have had heavy, painful, week-long periods from my teenage years but all of those are subjective so I just assumed my tolerance was low… until I started using big period cups and emptying them 5 times a day while I learnt that the average woman empties a small cup 2-3 times a day.
Anyway, the significantly heavy periods worsen the anemia, which also worsens the symptoms of Thalassemia so my doctor had put me on birth control to minimize my bleeding thereby, improve the anemia and hopefully, my overall well being. We later incidentally discovered the fibroids and that took us down another rabbit hole that I’m considering the best thing to happen to me in a long while. Given taking out the fibroids or fixing my uterus and cervix requires surgeries and I actually don’t want children, I have opted to get a hysterectomy. I begged for a hysterectomy 10 years ago due to said heavy, painful periods but my doctors in that godforsaken, bible-belt called Tyler, Texas offered everything but that because “what if” I change my mind about having children? I have had 10 more years of monthly misery because some close-minded medical providers gate-kept me from a hysterectomy because heaven forbid a woman decides what to do with her body… heaven forbid a woman decides not to have children.
Back to the point and moving down, the fibroids were discovered because I got an MRI on my right hip due to incessant, unexplained pain. Physical therapy was not much help and the x-ray showed nothing on my bones. Come to find out, I have tears on the cartilage of that hip. I didn’t even know that was possible but I would like to go back to forgetting I have a right hip because I have been in varying degrees of pain with varying range of mobility, daily, since late last year. Per my Orthopedic Surgeon, the best call at this time is ongoing PT to strengthen the muscles around the hip because some of the pain is from the muscles working extra hard to make up for the weakness in the cartilage. Per the pain from the cartilage, it’s a “suck it up buttercup” situation because the only treatment is surgery and mine is not quite bad enough for such an invasive surgery. So, pain for about a decade it is and when it’s unmanageable, I’ll go to him for a shot to the spot.
Finally, my feet won’t stop growing! I developed bunions in both feet gradually through my 20s and finally decided to get bunion removal surgery in approximately 2017. I met a Podiatrist, everything looked bad enough for surgery and we got it scheduled. Fortunately, I opted for a second opinion because I raced sailboats every weekend at the time and the thought of breaking both feet, putting screws in them and not being able to sail for several months suddenly started to terrify me. The new doctor verified that I have Bunions and surgery will help but he also said the bunions are a symptom of a malformation with my feet. Basically, the part of my feet (on top, close to the ankles) where the bones split up and eventually become toes is missing a piece (? or is not strong enough? I don’t remember exactly) so the bones keep gradually spreading out. This makes my feet keep growing, which makes my feet too big for my shoes, which then causes the bunions. The permanent fix will be to get surgery and place screws in both feet - then maybe do the bunion removal if I’m still interested. Or to move up shoe sizes and keep moving up shoes as my feet grow to prevent worsening the bunions. Given my fear of pain and love for sailing yet again, I chose to get new shoes. I went up to size 9 and they were perfect. Unfortunately, I’ve had to go up half a shoe size since then so he certainly didn’t lie. I still don’t fully understand it but I refuse to risk any sort of complications with both feet when I know that even without feet issues, I’ll always replace my shoes anyway so what does it matter if the size is a bit bigger? The only practical issue is that I do experience feet pain quickly from standing and walking but even then, I just leaned towards well-padded shoes to minimize discomfort and just kept it moving but never imagined I just had fucked up feet.
Overall, there’s a part of me that’s upset the grownups in my life failed me so I never got the medical attention I needed. Big picture, I’m glad to be medically validated, to have a name to these things, supportive providers and the resources for treatment.
My hysterectomy is today, I’m cleaning house and taking out everything except my ovaries so I don’t go into early menopause. We can’t do it vaginally because I have a higher risk of complications so we’re doing it laparoscopically with a robot and a couple of small cuts to my abdomen . However, we’ll switch to the old-school, big cut surgery if things go awry. Should things go well, I should be home this evening. If they don’t, I’ll stay at the hospital.
I’m excited, nervous and really hopeful about the improvement of my health. I know I’ll still experience fatigue from Thalassemia but it will be nice to not feel like death because I lost too much blood on my period. On a superficial level, I’m also looking forward to getting back my flat belly. Most importantly, I’m just so super grateful for having a community that loves and supports me. I’m am overwhelmed by the way my friends have showed up for me and I hope everyone feels this loved, often.
Like I said, I’m not dying, I’m just really uncomfortable and that discomfort is about to be minimized.
