Hello from the frigid Heartland! Okay, so this photo is a bit misleading. It was actually taken in June, 2011. That was an important day in my life. It didn't seem like it at the time, but that day was the start of some disturbing new and serious symptoms of my as yet, undiagnosed Celiac Disease.
I'd had other symptoms throughout the years leading up to this, but most of them I never even realized were symptoms. This day in the above photo, however, was very significant. For a couple of months leading up to this day, I'd been having problems with hives. I mentioned them in a previous post. These hives were not small, itchy bumps, but large, itchy welts. I pretty much had them nearly 24/7 for almost 3 years! My poor skin was so raw and damaged from so much scratching. I tried not to, but that didn't work so well. Benadryl was every day medication for me. But THIS particular day, beginning not long after this photo was taken, I had a minor anaphylactic reaction. I say minor now, but at the time I was scared to death!
This photo was taken not 20-25 minutes after the first photo. Now, I know my sunglasses cover my eyes in the first photo, but you can still see the major difference in how I look between these two photos. That first time, my husband took me first to the ER where they directed us to Urgent Care because my breathing wasn't affected. At Urgent Care they gave me a shot of Prednisone and a prescription for a week's worth. The next time this happened, I went to my regular doctor's office. My doctor was on vacation, but the doc I saw was very concerned and very helpful. It was actually amusing to watch the expression on her face as she watched the swelling that had begun at my lips move up my face. Not seeing this for myself, I picture that I looked like a more mild version of Eddie Murphy's "Nutty Professor" when he transforms from the skinny man into the character's overweight self. This doctor got me in to see the only allergist in town for testing with him. He was a joke. He was rude to me from the beginning. He treated me as though I was wasting his time. And, apparently I was, because the poke tests all came out negative. Though the next day I was extremely ill due to the serums used in this testing. My regular doctor checked different things. We thought that maybe my hypothyroidism was causing some of the reactions, but that proved to be a "no" as well. Three years of back and forth, Benadryl, blood tests, anti-anxiety meds, Prednisone, welts and periodic, worsening anaphylactic attacks. THREE YEARS!!!! I can't believe how patient, understanding and supportive my husband was during this time. He knew I was afraid and frustrated and depressed. I was having more and more anxiety attacks at the most inopportune times (aren't they always, though?!). And there were NO answers in sight!!!
And it just kept happening! Each anaphylactic reaction was worse than all of the previous had been. I began having minor versions of these reactions almost weekly with an eyelid swelling or a portion of one of my lips. I felt like such a freak! They were pretty much getting used to it at work. I know that my co-workers were frustrated with and for me that we couldn't get any answers. Then, exactly one year ago today I experienced the worst anaphylactic reaction that I've ever had. This one hit hard and fast! My entire face was swollen, with my eyes nearly completely swollen shut, my vocal chords were being squeezed shut and I began to have difficulty swallowing. I was able to still breathe freely, but I knew that this time the 3 Benadryl I took weren't going to get me out of this one. Because I was still able to breathe freely, my husband drove me to the closest Urgent Care, which is about 20 minutes from where we live. My sister-in-law is a nurse, so he was on the phone with her much of this time as she was instructing him on the best way to take care of me. She insisted that if my breathing became difficult he should take me straight to the ER. My breathing was still fine, so we went to Urgent Care.
Once at Urgent Care, I was given a shot of Epinephrine. I didn't get better. In fact, slowly, I was getting worse! The UC doc told me that they'd called an ambulance and were sending me to the ER. By now I was drooling a little because of not being able to swallow much at all. Still breathing, though. I tried to get them to let my husband drive me instead of sending me via ambulance, but she told me that if they did that my chances of making it to the ER alive were slim to none! That was an eye-opener for both Dave and me!!! Neither of us, despite how my body was reacting, believed it was as serious as that. I think my sister-in-law was the only one until the UC staff, to realize the severity of the attack. In the ambulance on the way to the hospital when we were still about 10 minutes out all of a sudden I couldn't catch my breath! It felt like someone was sitting on my chest, the pressure was so great and my lungs hurt from trying to breathe! I couldn't swallow, couldn't breathe, was drooling all over myself and started to panic! Corey, the paramedic working on me in the ambulance kept his cool, spoke to me in a calm, reassuring voice as he gave me a shot of Epinephrine in my iv. I quickly felt relief as I was able to breathe and my swallowing was less difficult.
At the ER, with the administration of more Epinephrine, Benadryl, Prednisone, anti-nausea meds as well as something to help normalize my heart-rate, I finally started to improve. The kept me in the ER for several hours before deciding that I was out of the woods and it was safe to let me go home. So many times in this past year I have thought about that day. It is still all so clear to me now a year later as it was that day. This severe reaction, as frightening and awful as it was to go through, was the catalyst to finally getting a correct diagnosis! My doctor was contacted by the UC staff and the next day his office called me to say that, though they were grasping at straws and didn't want to get my hopes up, there was something that they hadn't tested me for yet. Celiac Disease. I'd only ever heard of it because of my cousin and his daughter. I had no idea that it was hereditary or what, exactly, it was. A year ago this week the rest of my life began. It can sometimes be very frustrating and scary and tiring, but it has been and is leading me to a life of health. As healthy as I can be living with two autoimmune diseases. Immediately upon hearing even the suggestion that this might be what was wrong with me I began researching. Now that I know what the issue is, I have power! I have the power to do something about it. To take my own health into my own hands and do everything in my power to get and stay healthy. Of course, living with Celiac Disease isn't as simple as that. I am hyperaware all the time! I have to be! Even then, this is an autoimmune disease. I can do everything right and my body still sometimes rebels. I can do everything right and still sometimes accidentally ingest gluten without realizing it. Short of living in a bubble and cutting all contact with anything or anyone who isn't gluten free, I can't fully protect myself. But I sure am doing everything I can to keep myself as protected as I can. A year ago I was full of fear and apprehension and so exhausted from the journey that led to my diagnosis. A year later I am full of hope for a future, armed with knowledge and tools to be as healthy as I can be.
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