Before I begin this post, let me put up fair warning: This will be long and meandering, tying together many threads in order to try to get a clear picture. It will discuss medical details, including surgery photos, and will repeat things that I’ve talked about in the past. Feel free to skip by altogether. Now that that’s out of the way, here goes.
Something is wrong with me, and I don’t know what it is.
My body has a long-standing method of dealing with chronic illness and infection. When something goes wrong inside me and that wrong isn’t addressed, my body acts out to try to alert me to fix the problem. Unfortunately, this method involves multiple disparate symptoms that have no real ties to the problem except they are all reactions to chronic inflammation (caused by the illness/infection). You can’t just treat the symptoms, as doctors try to do. You have to find the cause. So when my body does what it has been doing for six years now, I know that something is wrong – I just don’t know WHAT is wrong.
Comparative example: From 1998 to 2009, I had several infected teeth that no doctor/dentist found. Symptoms in those years included a) constant throat infections, b) random allergy symptoms when I had no allergies, c) sudden weight gain/loss with no cause, and d) multiple mental health issues that didn’t respond to medication. All symptoms disappeared after the infections were cleared out. To compare: Beginning in 2014, a number of symptoms from a currently-unknown source appeared, including a) anosmia/sinus issues, b) random allergy symptoms (aka hives) when I have no allergies, c) unexplained weight gain, and d) multiple mental health issues that don’t respond to medication. Sound familiar?
Current symptoms in a nutshell: chronic hives, eczema, anosmia, chronic inflammation, hormonal imbalances, inability to control weight, insomnia, severe anxiety, and panic disorder with occasional bipolar II symptoms
What do (most of?) these symptoms spell out? An autoimmune disorder of some kind. However, I’ve had multiple tests for autoimmune disorders since 2015 with negative and/or “false positive” results. Beyond that, I’ve seen multiple specialists, had MRIs and ultrasounds, been given extensive allergy tests, taken several dozen kinds of medications, taken sleep tests, undergone physical therapy, and changed my diet in several major ways (cut sugar for months, cut gluten for months, cut alcohol for a year, low carb high carb etc etc etc). Nothing has made even the slightest difference to the nutshelled symptoms above.
The Doctors: My doctors have given up. I’ve been told that eventually the anosmia might go away on its own, that I just have to deal with living on sleeping pills, that hives just happen for no reason, that if I just lost weight everything would be fine, and that maybe I’ll develop an autoimmune disease in the future but there’s nothing they can do now. Perhaps I need another kind of specialist. IF they’ll see me without a referral, and IF they bother to figure out what’s wrong. Perhaps, just like with my teeth, it’s time for me to be my own doctor. Again.
The beginning: My symptoms began on May 1st, 2014. I know the exact date because it was the day I first tried out the Whole30 program. I only lasted 8 1/2 days on the diet, and during those days, I gained 7 lbs. Naturally, I assumed that it was the change in diet that caused the gain, that my body didn’t agree with Whole30/paleo nutrition. I switched back to eating normally, and the gain slowed – but it didn’t stop. Over the next few months, I gained 20 lbs. Over the next two years, I gained 80 lbs. Since then, I’ve cycled within the same ten-ish pounds, and my body doesn’t respond to anything I try.
Triggers: Over the last six years, I’ve examined that time period hundreds of times to try to find the trigger. At first, I suspected that it was the stress of moving cross-country coupled with family troubles and the loss of routine/familiarity, topped off by beginning to drink alcohol for the first time and the development of a binge-eating disorder. That would all make so much sense.
It has been six years. Six. Years. In that much time, you can test and eliminate potential causes one by one:
- Moving stress: Sure, lots of stress. But there was also lots of stress during my other three cross-country moves without any gain.
- Family stress: Sure, but this wasn’t the first time in my life where I had major family stress and mental health issues. In fact, the particular stress I was going through at the time began a year earlier, on July 2, 2013, and caused no weight gain. Beyond that, the family stress abated by mid-2015, and a big chunk of the regain happened in the year after that.
- Routine/familiarity: Those may have caused me to initially lose exercise routes and such, but I’ve moved back to the same area for years now and have the same exercise routines as before.
- Alcohol: For a long time, this was one of my best guesses. But it’s been years now since I had more than an occasional glass of alcohol and 1) months without alcohol have no effect on my weight, and 2) periods of more regularly drinking – like on vacation – also have no effect on my weight. Alcohol may have contributed to the initial regain, but doesn’t appear to be the smoking gun.
- Binging: Ditto alcohol. I’ve only had one or two small binges a year max since 2015, with no effect either way on my weight. Like alcohol, if this contributed to the gain, it certainly isn’t causing my current problems.
- Insomnia: My insomnia began in September 2011. I’ve had it while losing weight, maintaining weight, and gaining weight. It appears to have no relation whatsoever to my current troubles.
- Nutrition: Again, I thought this may be the change in diet to paleo in the beginning, but changing back didn’t help. Cutting gluten didn’t help. Cutting sugar didn’t help. Cutting protein didn’t help. Cutting fat didn’t help. Nothing helps. Calories in vs calories out is meaningless in a body that has an unknown illness affecting it.
Which leads me again to the question: What next? What else changed around May 2014 that could have led to All These Problems?
I have theories. Because, you know, the doctors don’t seem to care, and I need to figure this out on my own.
Theory the First: In January 2014, I had abdominal surgery. In the linked-post, I discussed the positives of surgery but not the negatives. My surgeon…wasn’t the best, or the most honest. He has since deleted his website, and has received many negative reviews of botched surgery since he did mine. This, combined with some of my ongoing problems around the surgery, makes me wonder if he botched something through ignorance or neglect.
The main problem: Part of my surgery was never completed due to his lies. Essentially, a section of skin still needs to be removed from my abdomen, but since it’s purely cosmetic, I didn’t spring for the extra cost he presented to me. However, I now believe that the surgeon expected me to go through this secondary surgery, and didn’t sew up that section of my scar very carefully in the initial surgery. Most of my scar healed perfectly, but this six-inch section in the middle – the section that was meant to be cut away, the part that bulges down in the photo – has a gigantic mound of scar tissue under the skin that itches and gets inflamed often. There’s some concern that there may be a seroma or some pockets of fluid/bacteria that is causing inflammation in my body. Additionally, the sewn-together muscles in my abdomen still have a lot of rip-like pain whenever I stress them, which is abnormal.
All this points to something being wrong, and since it was only a few months later that all of my insane symptoms began to blossom, it’s a lead I need to follow up. I currently have an ultrasound scheduled to check for seromas etc, and regardless of what turns up during that test, I’ll probably eventually find a new doctor to remove that pocking of skin/scarring, even if I have to pay for it out of pocket.
Theory the Second: Coffee. I began drinking coffee occasionally in 2013, then more regularly throughout the spring of 2014. When I did Whole30 that May, I went from drinking coffee with milk and chocolate sauce to plain, black coffee. After I quit Whole30, I kept drinking my coffee either black or just with cream. And I began drinking it a couple times a day. Then I started using larger mugs, and then larger, and I began to brew more concentrated coffee. For me, the process of making and drinking coffee was more about ritual than caffeine. I used the routine to prepare for the day, and then to get ready for my kids to get home in the afternoons. I’d drink it to avoid eating when I was bored or stressed. And more recently, I’ve been drinking giant swaths of iced coffee if I ever get anxiety triggers that make me want to drink alcohol, the theory being that it’s better to be addicted to iced coffee than alcohol, yeah?
Except. What if it’s the coffee that’s causing the problem?
Like the surgery issues, I’ve suspected coffee for several years but have never cut it completely. I’ve conveniently dismissed it as a potential cause of problems using the same arguments I’ve used with alcohol and binging above. But there’s one major factor that keeps coffee on the possibility list: Several times, I’ve cut back from several cups a day to a single cup per day. Each time, I’ve started losing weight. Eventually, various factors would change in my life and lead to drinking more than one cup again, and the weight loss would stop. Maybe it’s a coincidence, I don’t know, but until I test this one completely, coffee remains on the theory list.
Confession: The truth is, I don’t want to give up coffee. I enjoy it, both the taste and the social nature of it. I like the rituals involved. I like that I can use it to avoid emotional eating and drinking. And because of all this, I keep putting off cutting back, and I’ve never cut coffee out completely. I know there’s a strong possibility that coffee and/or caffeine created an inflammatory environment in my body that reacted to other triggers mentioned above, causing regain. Then, as those other triggers disappeared, the coffee/caffeine keeps me from re-losing. Knowing this, however, hasn’t convinced me to put the situation to the test yet. But I definitely need to do something about it soon, especially if the surgery theory comes to nothing after the upcoming tests.
Conclusion: I’m not going to stop looking until I find the smoking gun. Something is happening in my body. Something has clearly gone wrong and eventually I’ll figure it out. It would help if I had doctors willing to actually do something, but that’s never been the case, so I’ll do this alone if I need to. I’m not a doctor, but I AM willing to look and probe and research and experiment. But I also admit, I’m getting to the end of what I can do alone, and I’m already at the end of doctors willing to help. I’ve got nothing else, y’all. I just hope that one of my remaining two theories yield results, because otherwise, I don’t quite know what to try next.