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Day 275 - Healthcare

Thursday, November 19, 2020

I've been tossing around the idea of a blog on my experience with the healthcare system during my gall bladder / food intolerance experience. So bear with me; this will be a long post.

It started in late summer 2017. I was teaching a dance class and suddenly felt what I thought were the worst gas pains I'd ever had in my life. I finished up the class, left quickly and stopped by Walgreens on the way home to pick up some gas medicine. I took the medicine when I got home and laid down on the couch until I felt better. Over the next week, the symptoms came back most days late afternoon, worse each time. Then, they were so bad my husband took me to the hospital. They ran some tests, said they couldn't find anything wrong and sent me home. Two days late, I was back in the ER. More tests were run, no problems found. This time I was sent home with a referral to a gastroenterologist. I made an appointment with the doctor, who then ran every test he could think of: upper endoscopy (complete with a test for celiac disease), HIDA scan, another ultrasound, etc. He finally became stumped and told me he couldn't help me. By this point, we had reached the end of the year and my out of pocket maximum on my insurance (which I only had because my husband's employer paid for all of our premiums). We were $8,000 into this awful nightmare with no answers.

With no clue what to do, I spent several months scared to death. I couldn't eat a meal without anxiety that what I was eating was unknowingly causing my problems. I worked at a health club that offered nutrition coaching. I went to see the head of the nutrition program and she recommended I try eliminating all gluten and dairy, and add a cup of dandelion root tea to my daily diet. If you've never had dandelion root tea, it is disgusting. But I did it for 3 months, every blessed day. No improvements.

Finally, my mom recommended that I see my general practitioner and see if she had any recommendations on what to do next. My GP referred me to a different gastroenterologist and committed to figuring out what was wrong with me. The new specialist started off by saying that it was likely my weight that was causing the problem and that I would probably need to lose weight to feel better, but ordered a comprehensive blood panel anyway.

*Side note: I had already dropped the amount I was eating to lows I had never done before because I was afraid to eat. I had also spent 3 months gluten and dairy free. And guess what? I actually gained weight rather than losing it. I put on about 20 pounds during that time.

Well, the blood tests came back and all indications pointed to food allergies. So I was sent to an allergist. I was given a list of foods they test and told to only circle those I actually eat since they would likely be covering my whole back with the tests. Well, I had already stopped eating cabbage because years earlier I had found out that if I eat cabbage, the bathroom and I become really good friends. So I left that off. I found out through these tests that I am also allergic to peanuts, lettuce, onions, pork, and soy. I was given instructions on how to test my actual level of intolerance / allergy through trial and error with my diet. I was warned not to bother testing the peanut. It came back bad enough that the doctor said I would have a pretty rough reaction. I played around with the others and was able to keep them in my diet with decreasing frequency over the next year and a half. I have since eliminated them all, with the exception of soy lecithin. The thing about soy lecithin is that the protein has been removed, which means you can't actually be allergic to it. Now the reason why I use the term intolerance when talking about the foods is that my reaction is the worst stomach cramps you can imagine, to the point of incapacitation. I am not in danger of anaphylactic shock with any of these foods, but I also don't want the consequences associated with eating them.

To get to this point, I have now spent over $15,000 trying to find out what is wrong and have what I think is an answer. But as we will see, it was only part of an answer.

Fast forward to November 2019. I start having nausea almost everyday. I spend a lot of time making friends with the bathroom. And I lose all sense of a normal life. By this time, I have eliminated all of the food that causes problems for me. So I know it's not my food intolerances. I have now lost my health insurance as my husband changed jobs and his employer no longer covers our premiums. Premiums are so high that we can no longer afford to have me on the insurance. As a dance instructor, my employer does not provide health insurance. I am now on Medi-Share. Fortunately, Medi-Share offers telehealth, where you can talk to a doctor on the phone or through a video, for free. I try that. It's not all it's cracked up to be. The doctor barely speaks English, speaks to me for 2 minutes and concludes I have a stomach bug. She sends a prescription for anti-nausea medication to the pharmacy. I did that a couple of times before deciding it wasn't worth it because the doctor wouldn't listen to me.

By January of 2020, it was hit or miss if I could actually be well enough to participate in a day. Most days, I just stayed in bed because I felt so awful. But I had already committed to a trip with my family and decided to try to make the best of it. I packed two containers of pepto bismol tablets and took off with my family (my parents, my sister and her husband and son). On the way back to my parents house from this trip, I started experiencing severe stomach pains, to the point it would take my breath away and I wouldn't be able to breathe until the pains subsided for a few minutes. The pains came and went every few minutes for hours. We finally made it to my parents' house, where I had planned to spend a couple of nights before heading home. (I live in a different state than the rest of my family.) Pretty soon, my parents were taking me to the ER. My nightmare from 2017 was coming back, only this time it was worse.

At the ER, they gave me morphine to get the pains to stop. (*Side note: morphine apparently makes me hallucinate. I didn't know that until this particular incident.) After talking with the nurse and then the doctor, the doctor suspected that my gall bladder would need to come out. He ordered an ultrasound, but that didn't show anything. I was sent home with a referral to a gastroenterologist. I decided to stay at my parents' and try to get this resolved rather than going home because we had just moved and I had no doctors set up in our new location. The doctor I to which I was referred sent me for a HIDA scan. Sure enough, my gall bladder was bad. (*Another side note: The HIDA scan made me feel awful. I didn't eat for three full days.) I was scheduled for surgery and the gall bladder was removed. After my follow-up with the surgeon, I finally made it back to my house. I had been gone a full six weeks. I made it back one week before the world shut down. (2020 has been quite a year hasn't it?)

In April, I started having pains again. My husband took me to urgent care who couldn't find any issues. Two days later, I was in the ER. They couldn't find anything, but the doctor suspected that I had developed liver stones from trying to eat too much fat post gall bladder removal. He told me to eat as little fat as possible for several weeks and drink water until I felt I would float away. That cleared it right up. Ever since, I have been increasing my fat intake at a painstakingly slow pace. I'm almost back to where I was before all the problems began.

Just this year, I have spent over $12,000 (of which I still owe $8,000) on my healthcare expenses specifically related to my digestive issues. This brings my grand total to over $27,000 since late 2017. I'm still not fully recovered. I get tired exceptionally easily. My energy level is night and day different between what it was last fall and now.

I hope to post another blog soon detailing my problems and the stress with medical billing just this year. But I thought it would be good to start with background on what has happened to bring on these bills. Now I know gall bladder problems can be very difficult to diagnose, so that can make the cost skyrocket. But clearly our system is broken. There were many points in this journey where doctors did not listen to what I had to say and jumped to conclusions very quickly. That in itself cost me a lot of money.

Stay tuned for how hard it is to deal with medical facilities' billing departments.
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Member Comments About This Blog Post
  • no profile photo NYLAURA1
    You are not alone. Plenty of people have strange difficult to diagnose and treat syndromes. Let me share my weird experience.
    In 2014, I was eating a usual breakfast of granola, raspberries and milk. Suddenly my palms got itchy. Gradually my whole body got red and itchy. It was scary and uncomfortable. Naturally, I assumed it was food allergies. This reaction would happen randomly. I couldn't figure out a pattern. I got diagnosed with Mast Cell Activation Disorder. The specialist put me on an elimination diet and medications. One year was bad and I did not want to go on the shots which were the next option, so I tried acupuncture. I also looked up self healing and found Louise Hay.

    In May of 2019, I had a very bad week of attacks and considered taking an antihistamine that is not available in USA. Fortunately, I was able to associate it with getting my hair dyed. I stopped getting my hair dyed! (who knew that plenty of people would also stop dying their hair in 2020 due to lockdowns).

    The reason it took so long to figure out about the hair dye was that the reactions would happen the next day when I ate breakfast.

    I was upset that my specialist and my allergist couldn't help me make this discovery.

    I did so well in 2020 that I took myself off of antihistamines November 1 and I am still healthy. I do breathing techniques daily to calm my system and occasionally work affirmations with Louise Hay videos on YouTube.

    I hope you can heal and get your life back. I hope you can get relief from the bills.
    26 days ago
  • KIMPY225
    I am so sorry you have been dealing with this for so long. They money is one thing but having the physical pain and anxiety for so long seems to be even worse!
    I had gall stones in 2011 and had my gall bladder removed with emergency surgery. It wasn't fun and I still have bathroom issues sometimes even if I stay away from my trigger foods.

    It is sad that many Drs think we make up pain or don't believe we have a bigger underlying issue somewhere. Hopefully 2021 will be a better year for you!
    94 days ago
    I "liked" your courageous blog, but am so sorry to hear about your gallbladder woes! Praying for you! emoticon
    99 days ago
    How terrible for you! Prayers you get things straightened out!!

    101 days ago
    i am so very sorry that all this has happened to you. hopefully you can figure it all out, it helps that we need to become our own advocates. talking to billing people is a pain and maybe you can get some relief from the bills
    105 days ago
    It's weird for me to click like. Let me say I sympathize. I've had my own health problems, but have had insurance through most of them.
    106 days ago
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