Nowhere else really to turn with this. I have been suffering with a mysterious digestive ailment nearly my entire life. My mom distinctly remembers me not being able to keep down really any type of formula, she said she tried nearly all the formula substitutes. Growing up, I thought that I was just filled with anxiety or crazy or something, my family didn’t have health insurance and this was in the 90s pre ACA so our health care plan was if youre dying you go to the emergency room. I grew up thinking that I had a horrible phobia of throwing up and nausea. Recently, I got my anxiety, GAD, and panic disorder under control with the help of counseling and antidepressants, so for the first time in my life I can actually listen to my body without the cloud of anxiety disrupting me.
About a year ago I realized that my “phobia” really stems from an ailment. Last September, right after moving, I held in a relatively violent sneeze and it cause so much pain I went to the doctor. Originally I was diagnosed with a strained rib, but little did I know it would set off something I now know of as a “flare”. These have happened all my life, on and off, but I had no idea what they were or how to describe them. But slowly, after this stupid sneeze, my life got turned upside down.
It started off with “rib pain” then migrated to nausea and abdominal pain, not really generalized to a specific area. Then gastrointestinal upset (interpret that how you will). Around December I had an appointment with my PCP and he gave me a stool test and referred me to a Gastro specialist. I was quickly diagnosed with GERD, and given a date for an endoscopy. For some reason, I was not scheduled for a colonoscopy at the same time as this appointment, which really ended up costing me precious time. My endoscopy showed that I have damaged from GERD (I believe referred to as barretts esophagus) and a hiatal hernia. I was prescribed pantoprozole which really helped with acid production but really does nothing at all for the “reflux” part of the equation, which means I wake up with vomit in my throat and/or lungs 3 times a week.
The oversight of the gastro in not scheduling me for a colonoscopy at the same time as my endoscopy really cost time. I had another appointment with her in end of March/beginning of April this year. I told her everything that was going on and she scheduled me for a MRI. The MRI showed “diffuse bowel wall thickening possibly due to underdistention or sequela to chronic colitis” which, in my non-medical layperson’s mind means “either his colon was thick due to dehydration or he has ulcerative colitis”. Another stool test also showed that I have an exocrine pancreatic insufficiency and I was prescribed what I think is a PERT (good lord that shit was like 2300 dollars for a 3 month supply, thank god for insurance). From my webmd surfing during abdominal cramp spikes could be another indicator of UC. Thankfully, I have a colonoscopy on Aug 10, which will determine whether or not this is UC or I am just crazy or what.
In June I got the job of my dreams as an office worker in a locked psychiatric hospital. I love the job and the people. But, I have been pretty hunkered down from COVID over the past few years and June was my first month consistently going into public (I had two internships, but one was all virtual one year and the other was twice a week in office, but I had my own office). Long story short, I popped on a temp check going into work and then popped positive for COVID in early July. Didn’t really have any symptoms at all besides a fever that first day. Toward the end of my quarantine period, I started having severe belly cramping and other horrid digestive issues I wont detail here but I am not a stranger to. I knew this was yet another flare up (and just as I had started coming out of one). So I have been off of work now for almost two weeks, having only gotten this job 2 months ago. I am so scared I am going to lose my job. I was so excited to finally be working again, to finally be financially stable and this shit happens, putting that all in jeopardy. I am like, fully at a loss. I am not sure if FMLA covers me, I am not sure what the state of Oregon (I am public HC worker) is going to do if I am not covered by FMLA or OFLA. I don’t want to keep suffering like this, honestly.
Venting helps, counting my blessing helps, giving myself grace helps. But sometimes I feel so down, like half a man who cant even get up and walk 1200 feet to a bus stop and drag his happy ass to work. I know that is toxic masculinity talking, but I do truly feel broke down sometimes, and all I have left is to ramble on kos to people who have never met me face to face. I know this isn’t the place for this (I probably could of went to r/chronicillness over on reddit) but I feel like I have some friends here and I could really use some sort of support right now. Idgaf about monetary, I just need people to tell me I am gonna be okay and that I am not half a person for not being able to work.
Lord I sound pathetic but I am so stressed and in pain right now, I have nowhere else to turn. By the way, did you know getting a counselor at KP can take months and months and months. Yeah, neither did I.
update 1: got a call this morning that my trial service with the state had been terminated due to absence I did everything right, stayed in contact with everyone, even got a “guarantee” from my boss that no hospital would fire someone because they are sick
after my fantastic phone call with whatever dry ass they hired to fire me, I called my boss and told her she lied to me and she was like “attendance issues are attendance issues”
what a wonderful way to end someone livelihood