The only sign that I’ve not been well to most people is how thin I am. Some have even questioned whether my weight loss is deliberate, that maybe I mask it by claiming I have a chronic undiagnosed health condition but in reality I am choosing to starve myself. One time someone even questioned why I was counting the number of grapes I was allowing myself to eat. When I explained that eating more than 10 caused me to bloat and suffer severe abdominal pain and reflux she raised her eyebrows and rolled her eyes. That was insulting, especially because it took me months to figure out how many grapes I could actually have without harming myself.
I thought my health problems started in 2018 but for the doctor I am seeing tomorrow I’ve had to examine my entire life going back to birth. It’s clear to me now that something has been wrong with my body since childhood. I reacted to foods as far back as I can remember. First it was tomatoes. I’d develop welts any time the juice would touch my skin. Then peas made me vomit, pineapple gave me hives. The pediatrician pulled red dye from my diet because it too made me ill. Then came the swollen spleen when I was 8 yrs old. Doctors struggled to figure out why my spleen was enlarged. I had to endure multiple tests to see if I had leukemia or some other disease and stay out of contact sports, then as quickly as the problem appeared it was gone by the time I reached junior high school, only to reappear in 2018.
There has been quite of bit of strange digestive issues and allergic reactions in between my childhood and today that I always considered normal but realize now they weren’t. Like my allergy to Potbelly’s restaurant. I had no trouble eating there several times and then one day my eyes started to itch and my nose plugged up so I had to leave. Once I was away from the restaurant the symptoms resolved. It happened two more times but it was the third time I came very close to an anaphylactic reaction. Eyes swelled, nose plugged up, and I felt like I couldn’t breathe. Leaving didn’t improve things so I had to take multiple Benadryl to calm my system down. I couldn’t figure it out. Was it the food or the establishment? The first couple times just leaving helped relieve symptoms but the last time I needed medicine. I no longer go there and just tossed off the experience to Potbelly’s and I not being a good mix.
My health decline in 2018 became something I couldn’t just “toss off” though because I could have died. This is something friends, family and doctors have never really understood. Only if you’ve experienced what it’s like to waste away, be in chronic pain, along with multiple other crazy symptoms and be told over and over again “we can’t find anything wrong with you” and no effort being made to find out what's wrong, could you ever understand how terrified I have felt existing in my own body over the years. At one point I was unable to get out of bed and I was just existing on sunflower seeds, cucumbers, bone broth, and the physicians elemental formula. Doctors weren’t helping, they were continually hurting me more with their blasé attitude about my food sensitivities, rapid weight loss and pain. If the answer to what was wrong with me wasn’t right in front of them on a CT scan or blood test then it was all caused by anxiety according to them, except I couldn’t get a single psychiatrist to diagnose a mental health condition and treat me and I saw several hoping it was my mind that was responsible for the mess I was in.
Well… it has been exactly 4 years and 7 months since the first night I woke up with the initial symptoms that would leave me bed bound for months and struggling to find food my body wouldn’t reject. There have been many ups and downs in between that time and now but having lost another 12 lbs between January and April of this year leaving me at just 106 lbs I knew if I didn’t get help now I may not last much longer. The signs of malnutrition are here. I can’t even go for a 20 minute walk without shaking uncontrollably afterwards.
Tomorrow, thanks to my friend Terry Gips, I am seeing a doctor who deals specifically with complex cases like my own. Initially when I contacted the doctor her assistant said she wasn’t able to see me until October 2023 but would give her my email regardless. A day later I received a call that the doctor had squeezed me into her schedule and could see me in May. That alone tells me she is different than every doctor I’ve seen (18+ doctors). She clearly cares, and that will make a huge difference in getting the help I need.
Once again I am leaving the state to see a doctor. I had to leave to Michigan for kidney surgery back in 2019 because doctors here in Minnesota didn’t know how to diagnose or treat nephroptosis, or I should say they didn’t even care to try (long story not worth repeating at this time). This new doctor is in Wisconsin and from what I’ve learned she has a stellar reputation. My acupuncturist and physical therapist even know who she is and both say I’ve found the right person to help me.
I’ve been counting down each day to see her as if my life depends on it because it does. To say I’m overwhelmed with emotion right now is an understatement.
No more naturopaths, gastroenterologists, endocrinologists, general practitioners, chiropractors… just one doctor that knows how to stop looking at my body in parts and instead will treat me as a whole.
