It’s been quite a while since I’ve done an update on my health. For the most part I try to keep my health off of social media because I find that it is typically not very helpful or encouraging. Other times I find that talking about it can help me process and get it off of my chest.
So this year I have lots of good news and some frustrating news as well. I’ll start with the frustrating news and end on a high note with the good news!
For the bad news, I continue to discover new foods all the time that my body does not like. For those of you who don’t already know, autoimmune disease sufferers are pretty sensitive to foods that many other people may not be. It’s not a true allergy in the sense that one will swell up and stop breathing…etc. But it will damage our intestinal walls and leave us with a slew of other symptoms.
So far, my running “Kristin can’t eat” list goes something like this…
-Coffee (this is one I’m just discovering now. I used to be able to handle a cup or two a week…now I’m learning that I can’t unless I want to feel miserable for a few days)
-Yogurt, Ice Cream, Milk (up to now I’ve allowed myself some cheese but I’m starting to question this…)
-Any food high in fat
-Roast Beef (I don’t know why roast specifically…)
-Anything caffeinated (which is awesome when you’re a new mom…)
Some of these foods are really easy to avoid and some are less easy to avoid. They all have different responses, all digestive, but some are worse than others and some have additional side effects like migraine, itchy skin, dizziness…etc.
Why so many food intolerances? There are a lot of theories out there about how autoimmune disease starts in the digestive tract. One article my rheumatologist gave me was about the micro biome in patients with various autoimmune diseases and how this information could seriously change the way we treat people. Many autoimmune sufferers have something called “leaky gut.” I really hate this term because it just sounds so disgusting, but what it is, essentially, are tiny little holes throughout your intestines causing the many toxins living in your digestive tract to escape into the body/blood stream. This can make you even more sick and more sensitive to the foods you eat.
I always laugh, in an annoyed way, when people are skeptical of the various food challenges of someone with autoimmune disease. Why? First and foremost, who knows their own body better than the person living in it except God himself? Only I can tell you how different foods make me feel. Only you can tell me how different foods make you feel. Is it really fair to look at another person and judge how they are feeling when you have no ability to do so? Secondly, the body’s immune system is already on hyperactive overdrive. So much so that it is attacking its own self. Did you read that?? The BODY IS ATTACKING ITSELF as if it is the enemy. The immune system has gone cuckoo for Cocoa Puffs. So why is it so far fetched to believe that, if the body is attacking itself as a foreign enemy and destroying it, the body would attack otherwise harmless foods that enter it? What could be more safe to the body than the tissues already living inside of it. If someone with Rheumatoid Arthritis is suffering because the body is attacking the joint lining. What’s so dangerous about joint lining that the body should attack it?? Nothing! We need our joint lining! So what’s so dangerous about a piece of zucchini? Nothing! Again, the body has gone cuckoo…so trying to reason with it won’t help. It just is what it is.
The issue with all of this is that it’s really discouraging. I used to really enjoy food and now I really don’t. I don’t like going on vacation because I’m concerned about what I can/can’t eat. I am missing out on foods I really love and the consequences of eating these foods sucks so much that it’s not even worth it to cheat a little. And I’ve found that the longer I avoid the foods that trigger such a response, the more sensitive to them I become. For example, I didn’t drink coffee right after Ellie was born. I didn’t really have any until she was almost 2 months old. The first latte I had made me feel miserable for 3 days. The insomnia was ridiculous. So I have avoided it for the last month. Finally, I had a cup and am paying for it again. I didn’t know that it was the culprit last time. I figured I had accidentally gotten real milk or there was some other contamination issue. This time I made my own and know exactly what was in it. It’s the caffeine. Dang it!!
The other issue is that I never know what new food will pop up and cause a problem for me. This heightens my anxiety about food big time. I just wish that there was some magic way for me to know every single food out there that is bad for my personal system so I could avoid those and move on. I hate giving so much energy and thought to this aspect of my life. When I’m not nursing I at least have a medication I can take to ease the symptoms if I do have a problem. But I can’t take it or anything like it, apparently, while I’m nursing. So there’s really no relief.
The Good News
Not all is black rain clouds and storms (though I do love a good storm). There is some good news! My doctor says that I’m doing quite well and was able to lower my medication dosage. My numbers according to my blood tests are doing really well and my eyes haven’t shown any signs of problems from my medication. The rash I’ve been having on my chest that I wasn’t sure if it was pregnancy related or Scleroderma related is likely just pregnancy related and should disappear over time. This is all good news. My skin has stayed mostly unaffected to this point. My symptoms are just internal right now.
One of the things I sit and wonder from time to time is “WHY ME?” That sounds selfish, right? Why ME?? Why ANYONE?? It’s not like I wish someone else would have this instead of me. I don’t want to pass it along to the next guy. And I spend so much time in prayer that I don’t pass it along to my children. My heart would break if they would get sick as well. But there’s really nothing I can do about it. Asking “why me” doesn’t solve anything. And if I was to be given an answer, would it be good enough? Would I just say, “Oh. That makes sense. OK. Now that you’ve told me why, I’m fine with it.” Probably not. I’d probably argue about finding another way.
Sometimes I wonder if this is the thorn in my side sent to keep me from pride. I had always been so self-sufficient, independent. Now I really can’t do everything on my own. I don’t have the energy. And when I’m having a really bad day, I’m a total baby wimp and cry and need hugs and encouragement. So much worse than man flu.
I wonder if God is trying to teach me more compassion. I had never really understood the autoimmune world, especially for those who LOOK fine on the outside. I wasn’t trying to be mean or cruel but it just didn’t make sense to me. The points I made above about food, for instance, were the same things that puzzled me prior to this. I admittedly was one who would have said, “OK. All of that food stuff is just you being stressed out about food…it’s not real.” Without intending to be, I was a total jerk. I was ignorant to what could be happening in the body and the frustrations of being the owner of a body that is just falling apart no matter what you do. I was uneducated about the digestive system and the many hormones living inside of it as well as the majority of the immune system hanging out in there as well! I had no clue about how food impacted health aside from the obvious that we all know: don’t eat a lot of sweets, fats, oils… You know. Food pyramid from 3rd grade stuff. But there is so much more to it than that.
I’ve also looked at Josh from time to time and think, “Thank God this didn’t happen to you.” And I mean it wholeheartedly. If the shoes had been on the other foot we would be living in a lot more miserable home. And it has absolutely nothing to do with Josh and his tolerance for illness and has everything to do with how differently we would respond in being the caretaker. I wasn’t cut out to be the caretaker. I’m not cut out from the same cloth as a nurse. I’m just not. If Josh acted the same way I do I would be annoyed, frustrated, impatient. When I’m not well Josh is so patient, caring, gentle. He never complains. He doesn’t view me as a nuisance or inconvenience. He feels bad. He wants to help. He shows concern. Most importantly, he believes me. He doesn’t act like I’m a nut job. He doesn’t question what I’m going through. He supports me beyond that even. He believes me so much so that he will give up eating different foods to make it easier on me. For example, when we eat pasta, we all eat gluten free pasta. He doesn’t expect me to make a separate one for him. When I make homemade pizza, we all eat gluten free pizza. Instead of mashed potatoes, he’s fine with the mashed cauliflower…and it’s not the same. He doesn’t say, “well, just because you can’t have it doesn’t mean I can’t have it.” If he buys a special snack at the store that he knows I can’t have, he will buy something that I can have that is similar. He is much more kind than most.
When someone mentioned this to him recently, pointing out all that he does to accommodate me, he said that this is just what you do when you love someone.
Well, I really lucked out on that front. And I suppose that’s probably the best news of this whole thing.