There have been times in my life where I was thankful for a facebook group. I've had a girls group I loved to share in and with, I've had a broker's group that's helped me and an few agent groups that were fun and helpful. But a new group has taken helpful to an entire new level.
For a number of years I have quietly gone about my daily life while dealing with health issues that my husband knew a little about (hard not to when you live in the same house) and my physicians knew about and were constantly throwing different pills at. Blood pressure, acid reflux, arthritis, IBS, hives and rashes, coughing and severe fatigue, among a long list of things I was taking pills for daily. And sorry to share my "gross" with you, but 2 to 3 nights a week I was getting up between 2 am and 5 am and vomiting. It was my way of life and it was exhausting as hell.
Well a couple of years ago my mother was diagnosed with AGS Alpha Gal Syndrome. It's a tick born disease from deer tick bites. So when my mom was diagnosed I was determined to help her identify all the "sources" she could get AG from that would potentially be harmful to her and when I went to the CDC's site for more information on the subject.... The list of symptoms was there staring me in the face.
- Hives or itchy rash
- Nausea or vomiting
- Heartburn or indigestion
- Cough, shortness of breath, or difficulty breathing
- Drop in blood pressure
- Swelling of the lips, throat, tongue, or eye lids
- Dizziness or faintness
- Severe stomach pain
Holy baby Jesus I thought, I have that shit too. Now getting my doctor to actually give me the test was another challenge. I had to actually look up the labcorp code and give it to them before my blood work. And when I went in to the get the results of my blood work my doctor didn't even bring this up while looking at my labs, she was sitting there trying to get me on yet another medication for high cholesterol. So I asked about the results and sure enough I have it too.
My doctor and the local allergist weren't much help. Although you may know someone with AGS, you may not as it's only been diagnosed in 110,000 cases as of 2022. However the cdc estimates 70% of cases go undiagnosed because of lack of awareness among physicians and medical personal. It can cause full blown anaphylaxis and death.
When you have a condition, disease, syndrome.... whatever the hell you want to call it... and your doctor tells you it's time for your 5 year whooping cough vaccine because they aren't aware it could actually kill you... you figure out you have to do an awful lot of research. I can't have gummy vitamins or gummy bears for that matter or jello or marshmellows. Things that you wouldn't normally associate with "red meat" and it's often said "oh you have the red meat disease", it's so much more complicated.
So finding a group of people who are also advocating for themselves and have sometimes started their own research years ahead of me has been a God send. There are a ton of things I've learned from those who have walked before me and suffered years longer than me. And I'm thrilled to report I'm off of most of the medications that I was taking prior to my diagnosis.
My new diet is mammal and mammal by-product free. Sleeping through the night has returned and I'm so thankful for that. I refuse to be "trapped" in my home, so I do still occasionally eat out and risk some cross contamination even though I am very clear with the servers about it, it's happened a few times. I generally get hives first and can fight it off with children's benadryl. I can't take adult benadryl because you probably aren't aware, but I am, it has animal product in it. The only thing non animal that I react to (and all people don't) is seaweed, so my sushi has to be made with soy paper.
In closing if someone in your family has a number of the symptoms on the list, suggest they get tested. I cannot express how much better the last 6 months of my life have been since I made diet changes to keep me from being sick ALL the time and struggling to hide that I was literally sick ALL the time, both are exhausting.