Yesterday sucked. I had a really shitty day. It started great. I woke up earlier than I needed to, got errands run, parked illegally at UAB and didn't get a parking ticket (score!), and then I went to the doctor. Like with the tests I was given to take home and collect samples on myself, I didn't fully comprehend everything while I was being told. Heterozygously positive for two mutations of the MTHFR gene, yeast, yeast allergy, anxiety, depression, approved food list, more results to come (and then there was the, "Wow! You must have a really healthy diet! Some things could be better, but you're actually pretty healthy." Don't let my obesity fool you. I may not look it, but other than feeling like crap, I am actually healthy.) ... Yeah, it was a lot. And it was presented so matter-of-fact and focused on how managing the results will make me feel so much better, that, well, the reality didn't set in until I left. And then some things happened later, completely unrelated to this, and that capped off my day. Ugh!
When I looked more closely at the yeast thing, all I wanted to tell someone was, "I'm fu[dged]." And I did tell one person that.
I've written my health journey out before. Well, in bits and pieces. But, basically, a little over seven years ago, I started feeling nauseous and fatigued and I had this annoying, intermittent pain on my stomach. Doctors, endoscopy, ultrasounds, CT scan, bloodwork, a frantic call to my gynecologist (family history of ovarian cancer, personal history of ovarian cysts, GI troubles - an early warning sign of ovarian cancer, and, BOOM! I'm in my gynecologist's office) ... nothing. More doctors, waiting, tweaking medications to manage GI symptoms (and oh my word, the side effects!) ... nothing. New GI doc, more tests (radioactive tests are no fun, by the way ... nausea that can't be cured by taking a phenergan, edginess, sluggishness, irritability ... they don't tell you about all that). Saw a surgeon. Had my gall bladder removed. Still nauseated. Still fatigued. Only I have holes in my abdomen from infected incisions and they heal up leaving painful knots. (And to this day, if I sneeze the wrong way, I end up with an intense pain coming from one of them.) Oh, and I get this random, intense pressure feeling across my mid back a few times a week, usually between 4 AM and 6 AM that lasts about 20 minutes and takes a couple hours to sleep off because it takes that much out of me. Pain and fatigue symptoms worsen. Start getting tendinitis everywhere possible. Thyroid is crazy. ANA (autoimmune marker) barely positive. Three endocrinologists later and I have one confirmed autoimmune disease (Graves) that flares up with the other undiagnosed autoimmune (lupus? something else?). Occasional migraines. It just doesn't stop. And we don't know what is actually wrong, and how many things, creating all these problems.
I don't think some people realize how nauseated I get. As for the pain, I'm so used to it, I don't always notice it. I just keep on trucking at reduced levels.
Dealing with my health problems has been very overwhelming the past seven years. I don't talk about it as much as I should because if I did, that is all people would hear. I also like having the escape from it (if I don't talk about it and ignore how I feel, then I can pretend it doesn't exist). In addition to it being emotionally draining to not know what is wrong with me, only having clues based on what some medical tests about me may say and from paying attention to how my body reacts after I eat certain foods or do certain things, it's also financially draining. Going to the doctor and having all kinds of tests run is expensive, with or without insurance. Fighting for my right to access to healthcare, when I already feel so horrible doesn't help anything. And then there is the cynicism that comes when I am getting a new test run. After the first few times, I conditioned myself not to expect anything.
When people ask me why I feel like I do, and if I have seen a doctor and why if I've seen a doctor I don't know what's wrong, I really don't know how to respond. And it's awkward to be put on the spot when you're the one feeling bad. When people ask me how I could get sore after playing cornhole, that's one of those things about what is wrong with me. Or when I'm nauseated, people think I'm contagious with a stomach bug. People put me on the defensive all the time without realizing it.
Yes, I look physically able, but I'm not as physically able as I should be and I'm not as physically able as I would like. I have had to completely change my life because of this, but I try not to dwell on my past aspirations and instead focus on future ones. Living is draining, but I do it anyway because I know no matter what I will feel bad and I may as well have some fun feeling that way. If I told people how I actually felt every day, we wouldn't have time to talk about anything else. And everyone would just be really depressed.
So, back to yesterday... Yeast. Yeast, yeast, yeast. I'm allergic to it. My levels are over three times what the maximum level of normal range is. There are some other things that showed up that are managed by cutting out yeast. All I could think of was, "And I mentally prepared myself to hear that I have cancer." (Because, well, that's what I thought could be the worst case scenario and as long as it wasn't gluten, I could face it.) Well, it's worse than gluten. And it's not going to kill me. But, it's worse than a gluten allergy. Not to make this sound worse than cancer, but it's very life altering. And the treatment isn't very healthy. (And, I do know a little about how cancer affects people. My Granny had ovarian cancer when I was 15. And that's really bad and really scary, but she survived it. I figured if she and the rest of the family could get through that, well, I could get through it, too. Not that it would be easy, but it definitely wouldn't have been our first rodeo.)
I was given a list of approved foods. Yeast is in so much that when you can't eat it, it's easier to give a list of foods you can have, instead of what you need to avoid. I'll link to that list in a separate tab. Click here for link.
Unfortunately, this is not going to be a healthy diet. I will have to take supplements because I won't be able to get all the nutrients I should have from food. It should make me feel a lot better, but it is something I will have to strictly follow for six months. After that, I can test out "cheat days" and decide how often and how worth it they really are. This is a lifetime thing. And it is very life altering. No bread, no sugar, no alcohol, no starches, no dairy (except plain yogurt), mostly no fruits (lemon, coconut, cranberry and rhubarb are acceptable), and miscellaneous other items in varying categories (no peanuts, carrots, corn, pork, condiments, and probably more I haven't realized yet). There are yeast free fad diets that can be viewed online, but they are more generous than what the information my doctor gave me will allow. It's going to be okay.
I'm making my peace with it, but I also know this is going to royally suck. I can't just go out to eat. I can't just make a sandwich. I have to plan ahead and plan thoughtfully. I can't just go over to someone's house for dinner, and going out of town for a night ... I don't know. So, if you don't want to follow the list of approved foods when you want to cook for me, don't be ashamed, embarrassed, or angry when I bring my own food with me.
