I have been trying to write this for weeks, but truly couldn’t organize my thoughts or harness the energy to do so.
I am still mostly bed bound. I had been more mobile in November and December, able to walk around my house for 30 to 60 minutes a day. Unfortunately at the beginning of January my health took an extreme downturn. I was completely flattened in bed in level 10-15 pain on a scale of 1-10. There were days I didn’t even know how my body could continue to exist in so much excruciating pain. I turned 35 on January 25th and it was one of the darkest weeks of my life.
Ten days before my birthday my PCP unexpectedly fired me at an appointment where we planned to test out some crucial medications to manage my uncontrollable pain. Instead she said I was “too medically complicated” and fired me.
It was devastating.
It took me six weeks to get in to see an amazing PCP who is a D.O. and functional medicine doctor. She was and continues to be unfazed by the disorienting complexity of my body. I thank God for her and my N.D.!! My ND has cared for me above and beyond since this journey started 13.5 months ago. I am alive because of her.
I’m still unable to do really anything beyond lying down and sitting in small amounts of time. I can’t cook, fetch food for myself or others, clean, stroll around the house, drive, sit in a chair for more than a couple minutes. I still can’t even bathe myself still 13 months later I’m too weak, dizzy, shaky to be independent at a level that most people take for granted.
I recently failed a heart and autonomic nervous system test in March. I’ve since been referred to a new set of specialists at Cleveland Clinic because my Pittsburgh doctors said there isn’t anyone with enough training or specialty to treat me in Pittsburgh any more. This isn’t an excellent sign since there are over 35 hospitals in Pittsburgh.
My daily roller coaster of symptoms is over three pages long. From April 2021 to June 2021 I have 14 upcoming specialist appointments and medical tests, not including my weekly PT and therapy appointments. Despite having excellent medical insurance we’re paying $2,000 – $4,000 out of pocket every month… copays, medications, healing tools, deductibles, coinsurance, over the counter meds, at home medical care machines/equipment, doctors who are out of network but there’s no one in network who understands my condition 🤦♀️ At age 35 I now have a shower chair so that bathing is an easier process. This week I get my handicap placard to prevent Jess from having to push my wheel chair up multiple parking garage level ramps again like he has had to multiple times for hospital appointments.
My daily fevers finally broke in February 2021 after a round of Ivermectin. Eleven months of daily fevers, combined with menstruating 90% of the days of each month with almost daily diarrhea is EXHAUSTING. It makes it unbelievably hard to stay hydrated. And unbelievably hard to heal. The staph infection in my sinuses isn’t helping either. Luckily they’ve figured out how to prevent most of my breathing issues at night where I was falling asleep and waking up multiple times a night feeling like I was drowning.
After seeing my midwife (routine gyn care provider) and a gyn surgeon neither could crack the code on my crazy periods, bleeding for 6-8 weeks at a time with a few days off. My integrative PCP finally cracked the code by prescribing bioidentical progesterone cream. These last 10 days are the first time in 13.5 months I’ve had a full ten days off from bleeding. Yay! That being said I have had tons of gynecological testing, biopsies, ultrasounds and MRIs. A uterine and cervical biopsy without any pain meds is no joke! I almost threw up in my mask and passed out. Let’s pray the bio identical progesterone cream is the long-term solution 🤞
I am fighting as hard as I can for my healing. I am on a medication and supplement regimen that has me taking pills or nebulizing *13 times a day*. I also have a comprehensive growing list of 35 healing actions I take each day ranging from PT exercises to meditating to breathing exercises to gratitude practice to writing my politicians. (Got to stay inspired! Resistbot makes it easy to text my representatives!)
My impaired cognition, extreme chest/bones/muscles/joints pain, heart episodes/pain, breathing impairments, fatigue so heavy it’s like I’m covered in lead weights, and constant intense nausea are my biggest constant struggles. It is scary the decline that happened to my brain when I got COVID. In the last 13 months I frequently struggle to spell my name on the phone. I don’t know what I was talking about a few moments before. I say and write the wrong words without realizing it or meaning to. I’ve been referred to speech therapy to try to rebuild my cognitive function. It’s been jarring to go from a healthy 34-year old who managed 5-day a week care for her adoptive special needs daughters, while running my company, while running and improving 10+ six-figure, multi-six-figure, and seven-figure businesses for my clients to not consistently be able to spell my name or recite my phone number.
One good thing so far is that I’ve been diagnosed with a genetic connective tissue disorder called Ehlers-Danlos Syndrome. It is characterized by extreme joint and muscle pain, joint instability, hyper flexibility, easy bruising, GI motility issues and so much more! My whole life I’ve had many injuries that didn’t make sense to doctors and on going musculoskeletal pain the didn’t make sense and now we know why. It doesn’t explain almost any of my current 13.5 month struggles other than people who are hypermobile do you have a higher rate of having Long Covid.
Many have kindly been inquiring about how the restoration and rebuilding of our house is going. It has been a very long process full of materials and labor delays due to COVID. We left our house in early fall and still haven’t been able to move back in. We have been blessed to stay with family after spending $5K on 4-5 weeks in airbnb’s in the fall. (That cost for rent doesn’t not work on a teachers salary while paying a mortgage!!) Now that everything had been cleared out in the end we lost 98% of our belongings. We were able to save only 12 small moving boxes of belongings from our 2,600 sq. ft. house. Using a “moving calculator” based on the size of our house it should taken us 200+ boxes to move out of our home. We were lucky to save some metal items, serving dishes, silverware, some vases and some china. The rest was a total loss. We filled 14 dumpsters with what we used to own. Due to my health I wasn’t able to help with any of these processes. Pictures and videos equated my goodbyes. It’s crazy that home owners will not cover any replacement items. I have some very strong opinions about that!!
We were overwhelmed by the extraordinary generosity of those who gifted us in November and December with items on our Amazon wishlist that you asked us to make. You enabled us to literally have coats on our backs, sheets and pillows to sleep on, school supplies for the kids to learn and Jess to teach from home and so much more. Not to mention the local Pittsburgh angels that bought all the Christmas gifts for our girls and our Christmas Dinner. For my birthday Betty Karleski and Laurean Kile blessed my socks off by starting a surprise GoFundMe to help alleviate the continued financial pressure we’ve been in with me not working for 13 months, losing everything, rebuilding the house AND paying many thousand dollars a month in out of pocket expenses for my medical care despite having outstanding insurance.
I can’t thank you enough for the continued messages, texts, calls, cards, and gifts of encouragement. Because I’m still so sick I’m not able to reply and haven’t yet been able to thank each of the amazing souls that have blessed our family in the last 13 months.
For those kindly asking us how you can help us *now* there are two main ways:
1) We’ve updated our Amazon wishlist with things we didn’t realize we lost or needed in the chaos of it all. Mostly it’s items to help Katie heal and help us get a few more things we realized we don’t have bc we haven’t needed it in our temporary housing.
2) You can contribute to the generous GoFundMe Betty + Laurean started to bless our family to help pay the constant flow of medical expenses.
Thank you for being a loving soul on this long journey with us. We love you!
In case you missed the beginning of my COVID journey here is how it started: