I've been plagued since my mid-teens with hives that would hit unexpectedly. We would run ourselves crazy trying to figure out what I *got into*. We considered contact issues such as fiberglass insulation - my Dad was a carpenter - to plants I might have brushed up against - I was an avid outdoors person - to what I had eaten immediately before. It was a crap shoot as to whether we came up with something to blame it on.
The very first time this allergy hit me, it was an emotional day. My father had taken a job working out of town and had been gone for weeks. I was really looking forward to seeing him again. However, I had play practice for a talent show and was so excited that he would be home when I finished -- only he wasn't there when I got home. Nobody was. I was dumbfounded. How could the whole family have just gotten up and went without leaving me any word about where they had gone? I really worked myself up into a lather and had quite the emotional teen blow out crying and *snot slinging* as my father would have said. This being back in the 70s, it was way before cellphones and still during the time of party line phones. If you don't know what those are, count yourself lucky. We had an exceptionally gabby neighbor that was happily camped out on the party line merrily chirping away about everything and nothing so I was stuck at home with no way to even call anyone to track down my parents. On the flip side, they weren't able to call me either. And so both parties were stuck in place without the ability to contact the other. Our neighbor was on the party line for nearly 3 hours. I had cried, pouted, slept, and fitted. Finally my parents were able to call me and let me know they were at my cousin's house and wanted me to walk over. I remember resentfully thinking a note would have solved it all had they thought to leave one. But I quickly shifted to happiness that I was back in the loop and going get to see my dad after several weeks of him being gone.
I chose to walk through the pasture to my cousin's house, rather than the long way around using the road. I had no idea what a fateful choice I had made that day. In the sometimes shoulder high weeds lurked those pesky ticks that initiated me into the unknown world of Alpha Gal.
Once I got to my cousin's house, they placated me with homemade coconut balls. They were marvelous. And as I sat eating them, I started to sting -- we found a tick biting me in the middle of the back. Several *stings* later, we had pulled a handful of ticks from various parts of me. When I got home, I took a hot soaking bath and doctored the bites with alcohol and aspirin -- a mixture my Mother always had readily on hand since the big chigger bite episode several years earlier.
Late that night after dinner, I began to itch, we assumed it was discomfort of the tick bites. But then my neck began to itch and got intense. I was welping up and Mom told me to stop *clawing* at myself. But the itching wouldn't stop and it spread rapidly. The next thing I knew, I was clawing myself everywhere, even the palms of my hands and the soles of my feet. I had never felt so miserable in my life. My Mom was at a loss as to why I was broke out in hives. She called Granny to see what to do. Oddly, I can remember everything in detail of that day 40+ years ago except how they helped me. I do know that Mom and Granny decided it was *something* I ate and in reviewing my diet of the day, the only odd thing was the coconut balls. Because I eat Granny's coconut cream pie all the time, they decided it wasn't coconut itself but had to be something in those coconut balls. They blamed it on the parafin in the chocolate coating. Ok, so no more coconut balls for me or anything with parafin. We thought we were done. And so we were.... until my next episode.
I had several more hive episodes that summer. My astute mother noticed that each time they happened I had had an emotional upset -- what teen doesn't have frequent emotional upsets? As a result of this observation, it was determined that it was *my nerves* that was causing the problem and that I needed to not work myself up so much. The funny thing is, the outbreaks didn't occur during the emotional upsets -- it was always close to bed time or several hours after a meal but we hadn't figured that out back then.
These mystery hive episodes plagued me throughout my teens. Sometimes very severe and sometimes only a minor inconvenience. All during that time, we were an outdoors family camping, fishing and hiking -- and getting tick bitten.
Once I married and left home, my outdoor life changed and no more tick bites and no more hive episodes for nearly 7 years. We truly thought my prior hive episodes were just a phase of adolescent hormonal fluxuations and nerves. And then it struck again.
We bought a place in the country and it was full of welcoming ticks. It was a daily do to remove ticks from some part of the body. My first encounter with seed ticks was horrifying. My legs felt tickly and there like a light coating of pepper flecks on my lower legs were pulsing crawling seed ticks. The one thing that really stands out is that tick bites burn/sting as they are happening to me. And they itch for weeks and sometimes leave a tough leathery node that reminds me of a wart. The doctor gave that thickened hide a name once but I have forgotten what it was. Of course after this, I began breaking out with hives again but we never once associated it with ticks. We always looked at food for an answer and for ingredients of parafin or palm oil. I quit eating potato chips because we thought it was something in chips.
As time went on, the hives continued and we kept restricting things from my diet that we thought might be it - no chips, no coconut (good bye Granny's coconut cream pie), we switched to vegetable shortening (yes, meat fat shortening was still available and highly used back then). Each time we eliminated something from my diet, we thought we had solved the issue and so we would be allowed a false sense of security for weeks or months before it struck again.
But it wasn't the food eliminations that were helping me since we weren't eliminating the right thing but rather the fact that we were spraying and eliminating ticks which we had no idea were the source of my illness. Nor did we even realize it was in fact an illness. We just thought I was *getting into something*. At one point, we thought it was caused by perfumes or deodorants or laundry soaps. We were always hunting for the source of my problem....and never truly finding it.
Spraying for ticks and keeping them under control benefited my illness de facto we assume by allowing my body to drop its AG sensitivity -- which we as yet were totally unaware of. So, I ate all manner of meats in abundance having no idea THEY were the source of my miseries due to AG compliments of ticks.
The roller coaster continued, we would move to a new country place and the tick bites ensued followed by hive episodes in the middle of the night. Little did we know how crucial that *middle of the night* tidbit of information would later turn out to be. This mystery misery continued off and on for years with us never solving it on our own. The one thing that became scary was that the older I got, the more severe the episodes became. One night my face distorted so horribly and tongue hung swollen and uncontrollable out of my mouth that I looked unrecognizable as human. It all happened so fast. In terror, I woke my husband at 2:30 am thinking we needed to get me to the ER as I feared my breathing was going to be effected. I could barely get him to understand me. By the time he got fully awakened and jumping to dress, the episode began to subside almost as quickly as it had started. I was dumbfounded and frightened. I puzzled about what I had eaten, bathed in, sprayed on, breathed etc. I had nothing and that was scary. At least all the times before I could pinpoint *something* and feel I had control and could make adjustments. Not this time. But I had to get ready for work, had a child to take care of and life fast tracked on.
Over the years I had learned to have liquid Benedryl readily available and at the first signs of a potential onset of hives, to take several slugs from the bottle. Worked like a charm. However, having lived out of state and in town with no tick bites for 6 years and therefore no episodes, I had gotten complacent and stopped lugging Benedryl around with me. But having moved back to Oklahoma and visiting my daughter who lived in the country, I got bitten by ticks. Little did I know the merry go round was spinning again until it took me for the ride of my life.
In May 2014 I had an episode that hospitalized me. I picked up my tiny grandchildren and went to my Mother's. I had eaten very little but what I had eaten was several beef sticks, a bacon, egg and cheese biscuit, a tiny taste of fried cactus, a nibble of dandelion greens, and some coconut oil in my coffee. Both my brothers and myself are into wildcrafting and alternative health so we are always sharing and investigating differing things. Shortly after the coffee I laid down with my tiny granddaughter to help her take her nap. As soon as I laid my head on the pillow my neck began to itch and then it spread to my throat, my arms and legs. I knew immediately what was happening - not why - but I knew it was hives. I was totally unprepared and my brothers and mother did not have Benedryl in the house. There was a little general store a mile from there house so I grabbed my things and went racing off to get some Benedryl. I had no idea how severe this episode was going to turn out. By the time I got to the store, I was starting to have difficulty breathing and feeling a little light headed. I was having trouble speaking and itching and welped up. I think I scared the store clerk trying to explain to her what I needed. They didn't have liquid Benedryl so I had to buy pills. I took FIVE of them. I had to have relief. I was alone and doing poorly. I called my husband to alert him to my plight and told him that if I blacked out on the phone to call 911. I made it back to my mother's house. By then it was extremely obviousl I was going into full blow anaphylactic shock. My brothers immediately put me in the car and took me to the Emergency Room. Looking back on that day, I see how stupid my actions were in driving anywhere that day.
Of course the ER's job was to stabilize me and treat me for my symptoms. Four hours of hospitalization later, I didn't get a diagnosis but I got a very stern recommendation from the doctor that I schedule to see an allergist right away to determine what the problem was. He told me I had escalated beyond home treatments and best guesses because the next episode could kill me. He didn't have to tell me twice. I promptly called my primary care physician and had them refer me to an allergist. A few weeks later, I sat talking to the allergy doctor. I had written up my life history as I knew it and every detail I had about the day I went into anaphylactic shock. Her eyes widened and she told me she needed to ask me some questions that would seem odd and random but it was important that I think hard when answering. And then came the question that put the final piece of the puzzle into place.... had I been bitten by ticks in close proximity to any of the episodes I had experienced and most specifically around the time I went into anaphylactic shock? The answer was a resounding YES!!! And then I explained how the tick bites effect me and showed her the weird scarring lump on my ankle. From there I had food testing to confirm what she already suspected. The only test I didn't have was the blood test for AG levels. She said with my history and my allergy tests it wasn't absolutely necessary unless I wanted it and warned me it would be an expensive test. I waived the test for now and chose instead to spend the money on pursuing a healthier diet. At some point in the future I will have the blood test so that I can monitor my blood levels.
So, compliments of the ticks of Oklahoma, I have become a ticked off carnivore that cannot consume mammalian meat. My dietary journey to health and wellness begins. So far, since my dietary adjustment, I have lost 20 lbs and still losing. This after dieting for years and struggling to drop a minuscule 5 lbs at best. Even though it is a challenge to eliminate foods I dearly loved and replace them with what will hopefully become new dearly loved foods, the changes in the way I feel and the weight loss are exciting.
Different doesn't have to mean bad -- it just means adventure. :) And that is what this blog is about, my Alpha Gal adventure learning to find new delicious favorites and from that came the blog name Alpha-Gal-Licious.
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