I haven’t written a post just about our day to day life in a long time. Some of you have been reading my site since 2005 and have followed me through childlessness, a pregnancy, numerous church changes, theological changes, a move and so on up to the present time. I thought as we get ready to head into a new school year I’d catch everyone up on life around here.
If you’re one of my long-time online friends, you know I’ve been battling physical issues for years. This spring we were finally able to figure out one of the issues plaguing me. After working with my new allergist for over a year, we determined via scope and biopsy that not only do I have Silent Reflux but I also have Eosinophilic Esophagitis (EoE). In layman’s terms, I’m having an allergic reaction in my esophagus. White blood cells are attacking things they aren’t supposed to be attacking. (Or as one fellow EoE person put it… We’re supposed to have well trained soldiers in there taking care of us. Instead we have drunken hillbillies shooting randomly.) Just in the past month, there was a huge announcement that researchers from the Cleveland Clinic have determined the gene responsible for EoE. Hopefully this will lead to better treatments. But it is clearly genetic so at least I know I didn’t do this to myself.
It seems fairly clear that EoE is caused by food and environmental triggers although they still aren’t certain how much each plays a role for each person. It seems that environment does play a role as people seem to experience worse EoE symptoms in the spring and fall when outdoor allergens are at their worst. All of the EoE people I interact with in online forums have said that this year has been brutal for them which coincides with one of the worst allergen seasons in quite some time the US. Stress makes EoE much worse. And inadequate sleep.
The Silent Reflux diagnosis last year changed my life considerably. I had to give up many foods (regular coffee, pop, onions, tomato-based products, peppermint, many berries, juice, lemon, mustard, pineapple, etc.). The EoE on top of the Silent Reflux coupled with my Oral Allergy Syndrome has completely disrupted our lives. It has been hard on all of us over the spring and summer. I’ve been working my way toward a major elimination diet, but can’t come up with enough food to eat to feel well while on it. So I’m trying to introduce new foods that I can eat on the elimination diet, but have to do that carefully when I feel well so I can determine if I’m reacting to them. For example, sweet potatoes are a big plus on the elimination diet. Except I’m apparently part of the population segment that doesn’t deal well with the starches in sweet potatoes. And so on.
I’m trying to get to the point where I can follow the Autoimmune Protocol (AIP) for thirty days and then reintroduce foods to hopefully expand my diet. That means no dairy, no grains of any kind (rice, bread, pasta, etc.), no legumes, no eggs, no nuts, no nightshades (potatoes, bell peppers, etc.), no corn, no soy, no seeds, no chocolate, no coffee… I think that is it. The AIP has you include fish and seafood, but the standard allergen elimination diet does not include them so I have taken those out too. Drinking bone broth is supposed to be a big part of the healing plan on the AIP. I’m sure no one will be shocked when I say that I’m one of those people who doesn’t react well to the bone broth. At the very least it bothers my reflux although I think it is more than that. To be honest, I’m skeptical I can even get to the point of doing the AIP which leaves me wondering where to go next.
I met with a standard nutritionist about a month ago and it wasn’t really helpful at all. I pulled out my three ring binder of all the information I had collected along with a two page description of what I couldn’t eat, what I had tried, etc. and I think she was overwhelmed since none of her standard dietary roadmaps would work for me. Kind of depressing in a way, but I also knew that I had already done a ton of research on my own that was very specialized so I wasn’t surprised when she couldn’t help me.
So if it sounds like I’m not left with much to eat, that’s the truth. Because of my Oral Allergy Syndrome, there are many fruits I cannot eat. And now things that have never bothered me (red grapes and raw carrots, for example) are now bothering me. I’m eating mostly meat, a few fruits and veggies, and some gluten-free snacks I’ve found that don’t seem to bother me. I’ve switched to (expensive) higher pH bottled water because water (even filtered through a Brita) flares my reflux. And Starbucks mochas. I cannot drink a cup of coffee any longer, but mochas with coffee, milk and chocolate (all bad for reflux) do not bother me. Go figure. But in order to get on the AIP I have to eliminate the mochas and all the gluten-free products because they all contain things I can’t have on the AIP. But I can’t get enough calories and fat to function without them.
If it sounds nuts, try living it for a few months and contemplating if the rest of your life will be this way.
If you can walk into your kitchen today and cook and eat whatever you want, I hope you will get down on your knees and thank God because I truly had no idea how good I had it before all of this started. I cannot eat anything at a restaurant or carryout at this point. I have to cook everything at home from scratch with so few foods that I’m starting to deal with food fatigue where I basically don’t even want to eat a lot of the time. Naturally I don’t expect Caroline and David to eat with the same limitations so trying to cook well for them and cook something else for me is getting old. On top of that, food in general has become stressful for me because I feel like I can no longer predict how my body will react to things and so wonder every time I eat something I haven’t eaten in a while if it will cause a reaction.
Because the outside allergens have been so bad this year and I’ve been trying to get the EE under control, I have been inside all summer. With the windows closed. We’ve missed a wedding, cancelled plans with friends, etc. all spring and summer because I’ve felt so unwell so often. My world has become very, very small. We haven’t been to church since January (but that’s another story).
(We’ll skip over the hiatal hernia details as well as the fact that I’m a 47 year old woman – if you know what I mean. And the fact that my scent sensitivities continue to worsen.)
What are the bright sides?
Well, I can eat bacon! LOL!
It could be much worse. I’ve interacted with people who have very extreme EoE. Every time I get frustrated, I remind myself it could be much, much worse.
Probably the biggest blessing is the fact that I can work from home and stay connected with people through the internet. I cannot imagine going through this with a regular job. I cannot imagine going through this without the internet.
A Gifted Child
So while I’ve been trying to deal with all the health stuff, I finally came to the realization that Caroline is a gifted child. It actually took another homeschool mom pointing it out to me after reading my blog to come to this realization.
As evidenced by the topics on my site, I’ve always known that Caroline had unique traits. But I never really researched the gifted angle seriously because… I don’t know. I just didn’t. Even though I’m gifted and qualify for Mensa so it would make sense she would be gifted, I just didn’t zero in on this with her. Maybe God’s restraining hand? However, after digging into the reading I have zero doubts. Some of the characteristics made me laugh out loud because it’s just SO OUR LIFE! There was one list in particular that zeroed in on some very. specific. things. that just astonished me how accurately they described Caroline.
I’m not going to say much about this here since I try to protect Caroline’s privacy online. But a gifted child is not the same thing as having a smart child. Gifted is different and it brings with it a whole set of challenges and opportunities. Like most gifted kids, Caroline’s development is asynchronous in some significant ways and so I’m struggling to determine the best ways to meet her needs and address areas that need focus. And have all of us stay sane in the process.
The Long-suffering Husband and Father
God knew what He was doing when He put David and me together. And He knew what He was doing when He gave Caroline the parents He did and vice versa. We know beyond a shadow of a doubt that God created our family and equipped us for each other.
That said, David has had plenty of opportunities to earn many jewels for his crown in heaven. Dealing with an intense, gifted child and an intense wife with health issues… Pray for him! LOL! Seriously! He really has to deal with a lot every day on top of trying to run a business, take care of a home, etc. We have one very specific prayer request related to this that I cannot write here, but if you pray about it, God knows what it is.
Three Full-time Jobs
So I am basically juggling what feels like three full-time jobs right now. When I do it properly, the EE stuff is almost like a full-time job with appointments, cooking, trying to find things to eat, trialing new foods, etc.
Homeschooling and parenting a gifted child is emotionally intense. I could spend all day with her, finding things for her to do in her never-ending need for new experiences/items/ideas/books. Researching, planning, and executing it all for a highly-relational gifted only child could be a full-time job.
And, oh yes, my actual need to work. God has opened some amazing doors for me and I have enough opportunities and ideas to keep me busy full-time now. Between writing here, blogging opportunities, creating learning materials, etc. I can easily work full-time. And, honestly, I need to do so after all the medical expenses and lost work time over the past several years. But finding the time to do it is nigh unto impossible with all the other demands on my time and energy.
The Rest of the Story
So now you know some of the behind the scenes stuff. I’ll have to share about not having a church home another time. And life in Cute Little Town. And the adventures of Daisy and Rebecca, our American Girl dolls. (The blonde Daisy belongs to Caroline and the brunette Rebecca belongs to me. LOL!)
See you then!