I had the worst glutenation (my word, but I'll let you use it, hehe) yesterday than I have had since I was told I could no longer have gluten in September of 2010. It was awful, but at least it solidified the fact that I shouldn’t eat the stuff.
Some of you know my story, some of you don’t. I am going to put it down now so that I can get back to what I really wanted to write about in the first place – which was the glutenation of 7/24/11… Be warned – this is a long one (more of a short story, to be honest).
Four years ago, it must have been May, 2006, I woke up with my feet feeling really funny. They were sore and itchy. I looked at them for a long time, trying to figure out what was going on. They were red and swollen but I couldn’t see anything that would have caused it. I did the famous WebMD search to try and narrow down what was going on. All that I could come up with was plantar fasciitis and some other things I don’t really remember now. Nothing really fit what I was feeling so I didn’t worry about it too much. Throughout the day things were getting worse. At the time I was working in a kids club at a health club down the street from my house and so I was on my feet the whole day. It was painful, but not the worst pain I’ve ever had. I went home that afternoon and chased my little, then 2-year old, daughter around some more. By the time I got her to bed my feet were burning. I spent more time on the internet trying to figure out what was wrong.
When I went to bed that night I tried raising my feet up on some pillows, hoping if I got them higher than my heart they wouldn’t be so swollen. It wasn’t working and I couldn’t sleep. At all. They were burning so badly by this point that I thought I was going to go crazy and saw them off with a dull spoon. I finally got out of bed and soaked some towels in cold water, put the towels in plastic bags, and wrapped the bags around my feet. That worked a little bit and I was able to get some rest. I had to re-soak the towels once during the night. I got as much sleep as is possible with plastic bags on your feet.
K woke up early, as was always the case. She was an early riser. I was not. I unwrapped my feet and noticed the swelling hadn’t gone down but they were no longer red. I jumped out of bed like I usually used to do but popped right back onto the bed. My feet hurt to stand on. I mean really hurt. I was scared to get out of bed but I had to get K out of her crib and feed her. Her bedroom was in the downstairs of the house and I winced my way there. We had breakfast and I left her to her own devises as I scoured the internet for anything that might give me an idea of what in the heck was going on.
I still had to work that morning and so K and I gathered our belongings and got in the car. I had to drive even though we lived literally a two minute walk away. It took longer to drive there than to walk. But I had to drive. I knew there was no way I was going to make it if I walked. Driving the car was almost as challenging. The car was a stick-shift and using the clutch and gas was excruciating.
My mom stopped by to visit while I had the kids outside at the playground. At this point I was shifting back and forth on my feet because I was trying to relieve one of the pressures of standing. My mom noticed something wasn’t right and she tried to tell me to go to the doctor when I was done with work. I didn’t want to go because I was still convinced it wasn’t serious. It took three more days of plastic-bag wrapped feet and no sleep before I finally had enough. I called into work because I couldn’t walk. I was crawling around on my hands and knees at home, trying to keep it together and get things done that I needed to do. I called my mom in tears and she asked me to explain everything to her again.
“It’s burning, and swollen, and itchy and tingly. But it’s numb at the same time. I don’t really know how to explain it. It sounds so bizarre when I say it.” I told her.
“Hmm,” she said thoughtfully. “You should look up neuropathy. That’s what Nanny has and your symptoms sound similar. It’s the same thing your great grandfather had but they didn’t have a name for it then. He would come in crying from the fields and Nanny would rub his feet. And call your doctor. You need an appointment.”
“Ok, fine.” I was trying to hold back my tears. I called and made an appointment for that afternoon and spent some time looking up neuropathy. It fit so well. I was so scared.
My mom came over and drove me to the doctor. He agreed it sounded like neuropathy but then told me that it was probably because of my diet and lifestyle. I was too young to have neuropathy. His implication that I wasn’t taking care of myself made me so mad. With a two-year old and a husband at war there sure wasn’t a lot of time for fast living. But whatever, Dr. He took a lot of blood and gave me a sample of Lyrica.
I took my first pill when I got home. I was waaay out of it mentally, but for the first time in four days I had none of that pain, numbness, tingling or burning, and all that other stuff I can’t describe still to this day. It was a blessed relief. The medicine worked like a dream, aside from the fact that I never really regained my mental capacity while I was on it.
I did become depressed when I had the diagnosis of neuropathy. It was like all of my hope and dreams were flushed down the toilet. I wrote a very heartbreaking email to my husband. I didn’t think we’d be able to have more children because the medication could cause serious birth defects. I wouldn’t be able to do some of things I loved, like skiing and hiking, or dancing and ice-skating. It was a lot to take in. I remember telling him to divorce me because I was defective and he shouldn’t love me anymore. I told him that many, many times after the diagnosis but he swore to me he wasn’t going anywhere.
When my test results came back in they showed that I was deficient in B12, so I endured weekly B12 shots for six months. If you have never had a B12 shot I highly recommend it. But only if you’re a masochist. They hurt like heck! And the pain lasts for a day or so and you can’t sit or lay on the area you got the shot in, or really move your limb. I also had an electromyography (EMG) but it showed that the nerves in my legs and feet were functioning properly. So, low B12 was the official diagnosis.
After six months it seemed as if everything was getting better and I was weaned off the meds. It was amazing how much clearer my brain functioning was once I was no longer on the medication. I felt like I was getting my life back. The neuropathy would flare up every couple of months or so and I would go back on the Lyrica. Things would get better and I would stop taking the meds. This cycle lasted for a couple of years. Around November of 2008 it started getting bad again and I was about to go on the meds when I found out I was pregnant with the little guy.
I was overjoyed and over scared. I was grateful that something had kept interfering with me getting to the doctor. I was terrified of going ten months without my medication. It was a pregnancy not without complications.
Brian deployed in April of that year, and not long after he left I started having major stomach pains. I was scared to death something was wrong with the baby. My mom rushed me to the hospital where, as luck would have it, I was in labor. I was only six months pregnant. They managed to get the contractions under control and did a bunch of tests. They believed I had a placental abruption, which is where part of the placenta detaches from the uterus. I was put on strict bed rest. Like, I could only lie on my left side and I could only get up to go to the bathroom and take a shower. Sitting down, of course. Thank goodness my mom and sister were able to move in and take care of K and myself. I was in the hospital at least once a week with contractions or high blood pressure. After one stay they managed to lower my blood pressure, but they lowered it to the point I passed out. I managed to stay alive, as did little guy, pshew. But all of this is another story, so I will stick to the imperative stuff.
Back to the neuropathy. I think the reason I was able to tolerate the neuropathy during the pregnancy was because I was lying down for four months.
After F was born I waited a while to go to the doctor because I was nursing and I didn’t want to make him sick. We were out to dinner for my mom’s birthday when the neuropathy symptoms shot up my left arm. I started crying. I wanted all of this to stop. I was so sick of it. After a minute I regained my composure and managed to eat like a civilized person. The next day I called my doctor.
When I went in to see my new doctor she listened very intently. It was a relief to be believed for once. My old doctor thought I was making everything up. This new doctor thought it might be MS and so I was immediately sent for an MRI and given a referral to a neurologist. MRI was negative. Every single test they gave me was negative. I had to stop nursing abruptly and F was weaned within four days so I could go back on medication.
My neurologist was just as bad as my first doctor. By this time my brain felt like it was being zapped from the inside, as if I was standing next to an electric fence and holding on for dear life. Every sound was magnified in my head and I couldn’t stand loud noises because they sent a shockwave through my nervous system.
It was then that my neurologist decided I was suffering from anxiety. Yeah, buddy, I’m suffering from anxiety. It’s been three years and nobody has any clue what’s wrong with me. You betcha I have anxiety. But it’s this ‘situation’ that gave it to me, not the other way around. He put me on Cymbalta, which had the desired effect of making things WORSE, and I wanted to die. I wanted to give up. I went to a spouse retreat put on by the Army in January of 2010 and was not doing so good. I had to skip most of the classes to sleep and I wasn’t able to eat much so I was very weak. It was in this state that my husband’s Major saw me and decided that it was okay to get Brian home a couple of weeks early. I honestly didn’t think I was going to make it until he got home. I was in terrible condition and I needed some help.
Brian got home and went with me to my appointments. He went with me to the neurologist and decided it wasn’t me with the problem; the guy just wasn’t really listening to me. He was a migraine expert and wanted me to fit into that little box. I thought I was having a problem communicating, but even with Brian there the doctor really wasn't listening to me. I requested a transfer to University Hospital and finally, after almost three and a half years of mostly silent suffering, we were getting somewhere. I had more x-rays, blood, and genetic tests than I’d ever imagine needing. I was hopeful for once. After a few months of not know what was going on, I was beginning to lose my mind again.
My family, friends and I came up with possible auto-immune diseases and we asked my neurologist to test for them. Everything was negative. I almost wanted something horrible so that I would at least know what was wrong with me, even if it meant I was going to die next year. At least it would mean I would know what I was up against.
Lo and behold, at my September appt., with a round of negative tests once again, my dr. suggested I try gluten free. She’d been reading a lot about the damage gluten causes, and had a patient about my age with the same symptoms, and once he cut out gluten he was fixed. I was scared, frightened, angry, my emotions ran the gambit. I couldn't, at the time, live without gluten. My life was a never-ending revolving door of gluten-filled products. I immediately bought a Red Baron pepperoni pizza on my way home and proceeded to eat ¾ of it. I immediately fell into what I now call the ‘glucoma’ (gluten-induced coma - my term, aren't I clever??). I recognized it since I was now aware of it, but prior to knowing I never understood why I fell into an almost-stupor after eating a meal with gluten in it. Which was pretty much everything I ate, like I said before.
Everything made sense now. I did a lot of research on it and decided it must be what I have. Because I stopped eating gluten before they could test me, I will never know if I have true celiac. I say I do, because it’s much easier. I don’t know if this nerve pain will ever go away, but it has gotten so that I can get through the day and even walk. I started skiing again this winter, and that hadn’t been able to happen for three years. I was fired from my office job because of all of my issues, but now I have a much better one and I can make it through the day. Some days it becomes almost unbearable, and side effects from the medication (currently Neurontin) I have to take for the rest of my life can sometimes leave me unable to drive for days, but I feel like it’s so much better. I have a life back. I have MY life back. (at least the part that is salvageable when the warpath the gluten was taking on me is over)
Which brings me to yesterday, the whole point of this novel… I was glutenated. At the airport. Drat. It happened without me even knowing. I ordered an omelet with potatoes, hold the toast, not expecting the potatoes to be deep fried. I figured pan-fried, like most places make them. I had both pepperoncinis out of Brian Bloody Mary’s and when we stood up to leave the restaurant and walk him to his gate I mentioned that there must have been a lot of alcohol in those peppers. Or I got glutenated (another one of my snazzy words). I prayed I was drunk and put it out of my mind.
I got home and managed to get F into his crib before stumbling to my room. I thought the bed looked comfortable and so I lay down. Yup. It was comfortable all right. So comfortable that I passed out feeling like I weighed 1000lbs. At 11:00 AM. I couldn’t lift my head, my arms, my hands, not a thing. I was paralyzed. Kira cut her hand and I couldn’t get her a bandage. I had to have her bring me a piece of tissue and the tape so I could try and create my own. It was awful. I remembered that feeling from the night I ate the pizza, the last night I willingly ate gluten. I didn’t like it. I used to joke about what I would do if I got accidentally glutenated again; about the gluten-eating frenzy I would go on if I was afforded the opportunity. Not anymore. No more Red Baron pizza and Jimmy John’s with the bread instead of the unwich… give me a moment while I salivate over the death of ‘The List’ (and it was long. very long). I don’t EVER want to have that happen again. I don’t remember much from breakfast until 3:00PM, when I woke from my glucoma. I also happened to get glutenated at dinnertime. This time I wasn’t in the glucoma, just sicker than a dog until this afternoon. Was it worth it? Oh, heck no!!
So yeah, that list I was secretly cultivating for the next time? I’m putting it through the shredder. My intestines have healed now and I’m not going back! (that neuropathy, and everything that comes with it, though, is here to stay) I am proud of myself for saying that the era of gluten is over for me, which takes a lot of courage from a recovering glutenaholic!! Maybe there's a meeting I should be looking for somewhere...