March Madness

Post date: Mar 30, 2013 2:30:36 AM

"I am not saying this because I am in need, for I have learned to be content whatever the circumstances. I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do all this through HIM who gives me strength." Phillippians 4: 11-13

I had every intention to journal both mine and Briella's food allergy journey monthly from New Years Eve until now. Who am I kidding? There may be a day I take the time to reflect on the past three, looooonnnng, confusing, exhausting months of figuring this all out, but it's not happening anytime soon. If you are in my circle, you know that most days I feel downright miserable. I probably won't tell you if you don't ask and even if you ask, I won't ever use the word, "miserable". I hate being a whiney complainer when other people I know personally are suffering far worse; my dear Aunt Rita being one of those people. She's probably give anything *just* to have food allergies rather than battling cancer. Believe me, I always think about that! Perspective keeps me in check on a daily basis.

So let me preface this entry by saying that in no way is this meant to be a pity me post! If anything, it is a public diary of events. It's something I've been doing since 2010 on this website so it's not out of character for me to update on our lives. Poor Jim, this is changing his life too. I don't write much about that aspect or him, but it's hard on him too. He is so supportive, so helpful, so loving. He tries to cook me foods to help me feel 'normal' again. Our life has been completely changed by all of mine and Briella's food allergies. Our memories include, "Remember how yummy that food was on our honeymoon?" "Remember when you were just gluten free and we thought THAT was hard?" If only to be able to go back to being *just* gluten free again! Even he would be relieved.

I live each day in such a brain fog that I am forgetting more and more details. I need these blogs to help me remember. Someday I may decide to go to the Doctor again, and when that day comes, it will be nice to have all of the details in one place. Secondly, maybe there's somebody out there struggling like I have been struggling. I truly wished that I would have stumbled upon a blog like this a year ago. Maybe it would have helped me. Maybe not. Regardless, I hope to help someone from what I know and what I'm going through.

I left the Allergist's office in December 2012 feeling relieved to find out my diagnosis. A week went by of eating a very minimal diet and a little bit of reality and sadness of my new lifestyle had set in. I reminded myself that I was feeling so much better and if this is what it took, I would take it. I appreciated the benefits of eliminating those foods feeling my well being come back. I had a few blissful weeks of very manageable allergy symptoms and pains from mid December until mid January after I eliminated all of my confirmed food allergies. Then, all of a sudden, my agonizing symptoms began coming back in full speed by the end of January. The pains, the headaches, the body weakness, the fatigue, the insomnia, the itching, the face rashes. It was all consuming yet again.

I was still waking up with migraines up until just a couple weeks ago. The migraines have lessened to headaches and that's with a lot of daily environmental and food control. I would take my compounded medicine like it was my morning coffee; which by the way, I'm allergic to coffee. No coffee for a Mommy with a 1 1/2 year old is a bit depressing, but it is what it is. Anyway, I have to have my medicine compounded because, well, that's a whole other blog post but all medicine, ALL medicine has corn in it. Sometimes I have an immediate reaction and sometimes it's a slow build up so Briella or I can not take any kind of medicine unless it is compounded very carefully. It was honestly Briella's reaction to OTC children's pain medicines that helped me have the 'lightbulb moment' with getting medicine compounded for her before I ever even thought to do it for me. I kept reading about people in my food allergy group having to get their medicines compounded corn free, but I never (ever) thought she or I would be one of those people. Never assume. Boy was I wrong to not assume.

Once we threw away all of Briella's OTC pain medicines and replaced them with her compounded medicines, her weird immediate rashes from the pain medicine went away. The insomnia from her taking the OTC medicines improved. Her crying in absolute painful misery after getting a dose of medicine stopped. We never understood why we'd give her Tylenol for a fever and while most kids would sleep or feel better, she would be up all night long crying more than before we gave her medicine. It was the corn in the OTC medicines. Or when I gave her OTC Ibuprofen and she broke out in hives. I thought that was odd, but figured she was allergic to Ibuprofen. When her teething subsided and she didn't need the compounded pain medicine, it was around the end of January that I began needing pain medicine.

After months of suffering through headaches without any type of medicine, I thought to sample some of her pills. They worked! Not only did they take my pain away, but they didn't leave me feeling worse, like what was happening with Briella with the OTC medicines. I would take the OTC Tylenol or Aleve, feel the headache subside for a few minutes and then get really dizzy, weak, crippling stomach pain, knees that would want to buckle every time I'd stand up, and the initial headache now had become a full body attack. I never, ever understood that until I better understood the corn ingredients in our medicine and how it was affecting me. We have three medicines compounded for this household: Benadryl (priority # 1 in an allergy household), Acetaminophen, and Ibuprofen.

Benadryl has sadly been a daily necessity for me up until a few days ago. I can, quite literally, feel my insides being attacked by allergens as soon as an allergic reaction begins to happen. My cheek breaks out in hives, (see picture below of a comparison of my left cheek to right cheek as I'm having an allergic reaction), I get side splitting and shooting pains through the temples of my head, my upper back feels like fire is burning through it, my stomach feels like it is being eaten away and dissolving painfully slow, I can get so weak that it's hard to stand. The list of physical symptoms I get from ingesting any of my allergens: wheat, gluten, fruits, store bought milk, tomato, rice, or gluten free oats is long, but any kind of contamination from corn escalates my allergic reactions to almost unbearable. I thought it was sad to be in so much distress from eating. Little did I know, earlier this month, that my reactions would go from internal to both internal and external.

It began with daily eye soreness at the beginning of this month. I don't sleep well. In all honesty, I could be labeled an insomniac for my problematic sleeping. Once again, another issue; another blog. I remember describing the eye socket awareness and pain to Jim. I told him that my eyes hurt so badly that my eye sockets actually hurt down to the bone. I had such a strong awareness of the bones in my eyes that I could feel the bones holding my eyes in place, yet it hurt so badly it was giving me a headache around and in my eyes. Jim's response, "Hmmm, that's weird." Yep, weird. I am always feeling like a weirdo without any kind of explanation. I know that's not what he meant, not at all. There never seems to be an immediate answer or reason for my ailments so weirdo was what came to my head. Thank The Lord that someone in my food allergy group posted a personal story saying that she had been dealing with sore eyes and come to find out, it was her eye shadow. Oh my goodness, I thought, is THAT what was happening to me? I stopped using eye shadow and the eye pain was a lot less severe the next day. By the second day, I no longer felt my eye socket bones and pain around them. Yay for that revelation! I was bummed to have to throw away my eye shadows, but so happy to not feel that pain anymore. It was disturbing.

I had almost a week of relief and then I started noticing my face looked worse after washing it. It was breaking out in a weird rash, not hives, but a smooth, red speckled rash. Here we go again, I thought. It was my face soap. I researched and bought a corn free soap and sure enough, I saw improvement. A few days passed and the rash came back but this time it was looking like a burn. It was still technically winter and we were always indoors so it clearly wasn't a sunburn. A few more days went by and it was turning into a painfully red chemical burn on my skin. It hurt to touch it. It hurt to smile. It hurt to chew food. Now what, I thought? It was my skin make up! Since I had been using Bare Escentuals Mineral make up for years, I wasn't thinking to look at ingredients. It was mineral make up. It was natural, right? When I googled the ingredients in the make up, you can imagine my absolute upset, on so many different levels, that the first ingredient was corn starch. REALLY, have I actually become this person that's now topically allergic to corn? Wasn't it bad enough to be internally allergic? So, I was down to olive oil bar soap and all my make up thrown away or given away.

Thankfully I had asked for some special makeup for Christmas, but was saving it for when my Bare Escentuals had run out. It was a little luxury, I never thought I'd have to use it out of necessity, but was I thankful to have it! It was amazing the improvement on my face with the new soap and the new makeup. I was still having internal allergic reactions, but at least the whole world wasn't seeing my external reactions too! A full week of using the new makeup and my eye sockets began hurting again and I noticed my eyes were dark and puffy, but it wasn't every morning. Can you believe that I began to think it was my insomnia again? When will I ever learn, right? I had two back-to-back nights of going to bed early and not doing my face wash and cream routine. I guess that was all it took for my face to have enough time off to go into super allergic mode, but I didn't know.

The following night, I put my face cream on and went to bed. I woke up at 5am with a migraine. I remember it hurt to open my eyes that morning. I felt queasy, was dizzy, and I was squinting to see as I walked into the bathroom. All I could think, before looking at myself in the mirror, "What in the world did I eat yesterday to give me such a bad headache?" I splashed some water on my face and it hurt. That was weird. But my eyes, they hurt really bad. I've never been punched, but it felt like they had been punched. My vision was blurry as I looked into the mirror and my eyes were severely swollen with black and blue. I stood there looking into the mirror thinking, did I cry myself to sleep last night? (This happens more often than I admit or talk about because the allergy pain can be so crippling). No, I didn't cry myself to sleep the night before. What is going on, I thought? Then I reviewed the previous day's events. Not my face cream, not something else. I thought that I had it all figured out with the soap and the makeup. Apparently, anything touching my face HAD to be corn free. So, I switched to pure coconut oil as my moisturizer. I began to see and feel improvements once again.

Flash forward another couple days and my scalp begins to hurt. I thought it was from using the blow dryer too close to my scalp. I took a few days off from using it, but my scalp still hurt. When I leaned in close to the mirror, there were red, welt spots on my scalp. What's this, I thought. Seriously, not something else. Now what am I allergic to? You guessed it. My shampoo and conditioner. Yep, allergic to them too. They were organic certified gluten free. I had been using them for months. Nope, gluten free doesn't mean corn free and I know that, but how can a person develop welts in what seems like an overnight? I just never fathomed that I would become this allergic to corn. It was just this past week that I came to this revelation. I am still waiting on my special order 'safe' shampoo and conditioner to be delivered. In the meantime, baking soda and homemade dry shampoo are my hair care options.

I've begun making my own toothpaste and deodorant. Anything that touches my body, skin, mucous membranes, or pores seems to put my whole body into an allergic reaction. I haven't worn perfume in weeks. The moment it is sprayed on my body, causes an immediate burning feeling on my skin that leaves that area red or with rash. If I really want to push it, I can spray one or two spritzes on the back of my neck, but even that's pushing it right now. I stupidly put hairspray on my hair this past week and it felt like my face and head were on fire. On FIRE, it was insane! I'm also reacting to Kleenex tissues as well. Thirty-two and I need cloth hankies. Yeah. It's really humbling. I'm having a difficult time making that change. I don't know why, but I am. That's today. Maybe tomorrow it will be easier compared to sacrificing something else. I'm trying not to feel like an alien in this world right now. I think that's what it boils down. The bottom line is that it's no wonder I've been reacting to almost everything I'm eating lately because corn was always getting into my body with all these cosmetics. I'm really, really hopeful that these cosmetic changes will help my health improve again.

My Dad jokes that I'm not living in the correct century. I joke that my new nickname should be Laura Ingalls Wilder. I always loved Little House on the Prairie as a kid so maybe it's fitting that I should live a homestead lifestyle, right? HaHaHa. It's not by choice, though, but at least I have these options to feel better. Trying to remain positive. The truth is that I'm making all my own food, making my own personal hygiene products, making and using bone broth, drinking kefir water and milk, and eating fermented sauerkraut. So what's next, you ask? That seriously IS the question. What's next? The month of March has truly been "March Madness" for me!

And while I wrote all of that about myself, I haven't even scratched the surface of Briella's food and topical allergies. Let's just say she's riding close behind me. What a discovery this has been and even more of a journey. Just two days ago we realized that her Sun Maid Raisins were giving her a corn reaction. She didn't get a rash the first few days of eating them, but on Thursday night she did. It had built up in her system but that rash helped us realize what was happening. She was misbehaving, not sleeping, and screaming a lot this week. I knew *something* in her diet was affecting her, but what? We had just gotten her the raisins 6 days prior so it all made complete sense in hindsight. Every morning I wake up wondering what today will bring, but no matter what it brings, The Lord never fails me or us. He has a plan. I have a lot to be thankful for and I remind myself of that. And I'd be lying if I said that some days I have to remind myself a lot more than other days. Perspective, remember?

Here are the pictures I told you about. I'm embarrassed to post them because I try so hard to stay indoors where no one can see me when hives occur. It looks like acne to most anyone, but it's not. It's painful, it burns, it hurts to touch, it itches, it happens fast, and it can take days to go away. No one usually thinks to take pictures in the midst of an allergic reaction, but recently I am learning to do it more. This comparison picture shows the hives on my right cheek versus my left cheek being fine. Briella has the same thing happen to her. She will get hives on one cheek but not the other. She also gets eczema badly during a reaction as well.

Can you believe that I had this exact same kind of hives on my face this past summer and went to an allergist and he told me to see a Dermatologist because, as he said, "This isn't an allergic reaction. It's probably eczema or rosacea" Thankfully I saw a different allergist, for a second opinion, who believed me and also confirmed my food allergies! Such a shame that we have Doctors in the world who treat us like we don't know our own bodies and dismiss us in our time of need. This is what can happen to my face almost immediately upon ingesting corn or, most recently, from products with corn touching my face or body. The same thing happens to Briella. It also affects her behavior, her mood, her sleep, and her digestion. Jim said it best this week, "When she eats corn, she grows horns." It's so true; it's so sadly true. She's a crazy little screaming maniac when she eats corn contaminated (corn-tamination) food. She also requires allergenic bath soap, lotion, and detergent like me. We can no longer use fabric softener.