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Daphne's blog

I'm putting my money where my mouth is!  I'm not going to ask others to share if I won't do it myself so... here is the personal blog of Daphne Lynn Tapp Worlety.  I do not write this blog because I think anyone should necessarily care what I have to say but rather with the wish that someone out there might identify or find a thought or circumstance that rings true in their own lives.  To hopefully gain the realization that we are not as alone as we sometimes feel.  Sometimes hearing an alternate viewpoint or way of thinking opens our minds to ideas and concepts that help us all grown as people, this is why therapy is so helpful.   So here's some free therapy! LOL  Use it as you will. 

Me and my husband Chuck

The most complicated relationship I've ever had is with-

Updated: Jul 17, 2023

This is going to be a long one, just warning you now. Maybe it will help someone out there who has the same symptoms. So bear with me and pass by if you are healthy and happy and this bores you lol. But- you may recognize some of the symptoms or know someone going through the same stuff. So, it's on my heart tonight, and here I go.

I have had what i would call a very complicated relationship with food my whole life. First of all, I love it. I love everything about it. The texture, the taste, the way it makes me feel good (yeah lets not START evaluating that). Time to celebrate- lets plan a meal or go out to eat. Feeling sad- food'll make it better. Wake up in the morning- what are we going to eat tonight? Bored? Lets eat something sweet. Then something salty to replace the sweet taste. We all have our things. Anyway, this love of food translated to a weight problem and a self esteem problem that i have struggled with my whole life- go figure. How do you give up a bad habit you cant really quit? And the love/hate relationship that I have had for 50 years began. And then one day the way I had to look at food all changed. Food was killing me.

Over the course of about 3 months in 2020 my life changed, was forever altered. February 2020 I had both my knees replaced. Major surgery. Long recovery. March 2020 Covid shut down the United States and the world. Everyone's life changed. Forever. And in April or May 2020 i was bit by a tick. I remember pulling one off of my arm around this time, while i was sitting on the back porch smoking a cigarette, and it is my only recollection of pulling a tick off me in the last few years . My first "attack" happened on the 4th of July 2020, after cooking a pot roast that day. I woke up at 2 am in a panic, not able to breathe. I paced and smoked (yeah I know). Chuck made coffee, he kept asking if he needed to take me to the ER and I'd shake my head and try to hide how much i was freaking out. The first night this went on for about 2 1/2 hours until I finally collapsed and slept. For over 2 years I called them panic attacks, for lack of a better explanation.

They were kind of like panic attacks, but they lasted for 2-4 hours. I would pace. My mind and heart would race. I told Chuck I felt like all my neurons weren't firing right, however much sense that makes. I would throw up till I couldn't anymore. I would sweat and then chill. I would feel like I couldn't swallow or breathe right. There was an obstruction in my throat and I couldn't take deep enough breaths. I would hyperventilate. I would feel like I was dying. I would feel like I wanted to die. I would take enough medicine to make myself pass out sitting up. The next day it was all I could do to sit in a dark room and try to answer emails and handle work problems the best I could with no light and as little noise as possible. This was happening 1-2 times a week. The almost always happened at bedtime and I began to dread the nighttime and going to bed.

Then I started feeling like my lungs hurt every time i hit a cigarette during the day. So I started the tests. I was tested for COPD, and fortunately it was negative. They tested my heart to see if it was working as it should. I was tested for every autoimmune disorder- they thought i might have lupus but then it wasn't. I finally quit smoking in November and then proceeded to gain 60 lbs. over the next 6 months (and FYI I ate what i wanted for about a month till I reined it in but my body wouldn't stop gaining. And I already had about 60 lbs. to lose so now we're over 100 and very MISERABLE). I was told that maybe a therapist could help me not have the panic attacks and to start seeing one. I started wondering if I was doing this to myself. I adjusted my anxiety meds. A few times actually, which probably hurt me during this time way more than it helped. In January 2021 I had my first positive COVID test and a few weeks later I lost my sense of smell, which didn't start returning until a little over a year later. It is still not 100%. During that year I could smell NOTHING, except phantom smells. One day I would just have a smell come upon me, kind of like when you burn your nose with bleach. I could never liken the smell to something similar. Sometimes the smells were almost pleasant. Sometimes they were horrible. Sometimes they were so strong that i felt like I was choking on the smell. I lost my sense of hearing in one ear for a few months that summer. So then I started testing at the ear/nose and throat specialist. We did that for several months till my hearing came back for no apparent reason and I gave that up; no one could explain the smells. And it appeared I didn't have a brain tumor so that was good news.

This is getting long and I don't like talking about myself much so I'm going to wrap this up. My husband went to see a new chiropractor and during their visit my symptoms were discussed and I was invited to come see him for nutritional testing. Anyone who would like more information about my doctor please reach out- I feel in my heart that he saved my life and I will gladly share his info with anyone who wants it.

The first thing we discovered was that I was very gluten sensitive. I quit eating gluten and I started feeling better in a lot of ways. I was still having attacks but cutting the gluten out of my diet helped me tremendously with my energy and my mood. It was hard to eat this way but I was so ready to do whatever I needed to do to feel better. For someone who had cheated on a diet her entire life- I never have knowingly done so since November of 2021 when I quit gluten. And then with time we finally determined the biggest problem and I was diagnosed with Alpha Gal syndrome. I'd never heard of it, I had to ask Doc to spell it so I could write it down and go home and research it. No red meat. No dairy. And then throw no gluten in there too and we're all having fun. I HAD BEEN MAKING MYSELF SICK WITH FOOD. I struggled with feeling a sense of fault in it, even though I didn't know exactly what I was doing to myself. But the food I had always loved was killing me. So sobering. And so depressing. I went through a pretty deep depression for probably 4,5 months and turned 50 during this time, go me LOL. Suddenly food was just for nourishment and for necessity, not enjoyment. It was a big adjustment.

I don't like to go out to eat anymore. And if I DO eat somewhere I'm taking the chance that things might not have been cooked as they say, with the ingredients they say. I'm taking the chance that when I ask if something has gluten, or if it is vegan, that people think I'm a pretentious bitch instead of someone who gets sick- deathly sick, and they don't care if they put the right thing on my plate or not. There have been a few times I have ordered a vegetarian option and was told it was also gluten free and I thought I should be "safe". Sometimes a few bites in I can tell I'm eating something I shouldn't and I'll get by with just a mild attack. Sometimes I don't know I've screwed up till an attack starts. I hate to travel anymore, I'm terrified I will have an attack away from home and away from Chuck. Like someone with seizures, I can sometimes feel one coming on and it sneaks up slowly. Sometimes I can point to the cause- but sometimes I cant figure it out and I know that this will be something that I can never fully control, will always suffer from in some way. Do you know that there is meat in almost everything?? That is no joke. Here are just a few things that have made me sick and I didn't realize what I was doing wrong at first. Not taking my ADHD medicine out of the plastic casing before swallowing. Taking NyQuil. Taking Tylenol. Burning a candle. My first turkey sausage in a meat casing. A new lotion. A new hair product (I have also had horrible eczema in my scalp as a symptom when I have had accidental dairy) Cigarette filters!! (this is why the smoking was getting to me so badly). Something cooked in bacon grease (I AM in the South). One thing I have learned about Alpha Gal is that people's symptoms vary so much, and vary big time in their severity- from slight symptoms that are just kind of a bummer, to life/death symptoms that have killed. People go into anaphylactic shock and die from an Alpha Gal allergy attack. I have been lucky I feel. There have been 3 different times that I almost went to the ER. There have probably been about 10 more when I should have. The rest I got through. Over time I've learned some of my own limitations and hard no's- dairy exposure seems to be cumulative, I can have a little every now and again but it adds up and will eventually trigger an attack if I'm not careful- and it makes my scalp break out and itch till it bleeds. But the slightest exposure to red meat can cause horrible attacks, I don't chance it in any way but have still been caught many times on something dumb that I would never dreamed of being an issue. Its not been easy. And this is my life now. And I'll do whatever I can to try to never have an attack again, even though I've learned that may never happen. I still get them. Luckily they are further apart now and I am controlling them as best I can. The one bright spot is I've lost about 50 lbs since my diagnosis lol, but what a horrible way to lose it. I know every way there is to cook gluten free chicken in the world but still yah for chicken and vegetables and plant based butter :)

OK bitching and crying now over. I'm uncomfortable with all this sharing but that's what this is supposed to be about and maybe it will help someone. All I do know is the cases of Alpha Gal have risen astronomically in the last few years. It was around pre-Covid, but its around a hell of a lot more now, that's all I'm saying. Covid, vaccine, whatever, I'm not a huge conspiracy theorist but there's something there. But I know that it's real and I know what it's like to have a sickness that people can't see and therefore don't understand. They cant see my anxiety or ADHD. They cant see my Alpha Gal and fibromyalgia. They cant see my asthma (most of the time) or know I have 2 fake knees and 5 surgery scars that hurt like hell every time it storms. People don't understand things they cant see for themselves. And after a while you get tired of explaining. People can only understand to their own level of perception, what they are prepared to understand. Sometimes I try, sometimes I don't. If there's anyone that reads this that wants to talk- I'm here.

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