Tips from a country "Gal" for living with “invisible” chronic illness.

The Art of Alpha-gal:

By: Lisa Dees

(Disclaimer: some images, although are very real, may be unpleasant to look at, if you are squeamish please do not read this blog post)

Stories from a country "Gal" navigating life on the farm, marriage, motherhood, and ministry with “invisible” chronic illness....

I was sick for years with unexplained illness after illness. My doctor had run all the tests. Even though my blood work was abnormal on many of those tests, nothing specific was ever found to be the culprit of my symptoms. 

In 2020 I began to get worse and the doctors discovered that I had a heavily diseased gallbladder. That was the culprit! They said having it removed would heal all my symptoms. But it did not.

In 2021 as my symptoms began to take over my life. Eventually, the doctors found A-typical cell growth in my cervix, uterus, and fallopian tubes. After surgery a few symptoms did improve. But when those symptoms went away I noticed a plethora of new symptoms.

In 2022 I was sick constantly, so my doctor sent me to a specialist. After what felt like a million blood tests, chemical patch tests, and skin prick tests we had a few answers. First, I seem to be allergic to everything under the sun. Second, I was tested for a rare condition called Alpha-gal Syndrome (AGS). AGS is caused by a tick bite, but can wreak havoc on the body, especially when it goes undiagnosed for years.

I had to be my own advocate and do my own research. I discovered that I am allergic to all mammal and mammal byproducts. That includes food, hygiene items, laundry detergents, soaps, certain medicines and so many other things that I do not have time to list. AGS symptoms are what some would call random and do not fit a diagnosis criteria. Everything from rashes and hives, to severe stomach and bowel pains, to anaphylaxis or anaphylactic shock.

Every day is a struggle. I do not know if I will wake up having a good day or I won't be getting out of bed at all. But I know that God has a purpose for me going through all of this. I may not understand the purpose right now. But I have faith in what God has in store for me!

So each day I get up; I plan my meals and decide what I can try to eat today, I double check my emergency kit and make sure I have all my medical needs packed and ready to go, I check myself for how much energy I have to complete tasks, and I try to find good things throughout the day to dwell on. Looking forward to what I can do or can eat, and not dwell on the things I can't do or can't eat.

Since I was diagnosed with AGS it has opened the doors for the doctors to find out other issues with my body. But that is for another time, another story.

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Basic tips from a country "Gal" for living with “invisible” chronic illness.

• Remember that God has a purpose for everyone and everything you go though. Rely on Him during the good days and the hard days! He will bring you through anything if you let Him. Claim healing daily, knowing that God promised He would heal us, in His time, if we ask. You are not in this alone.

• Check your invisible suitcase… How much can you carry today, how many things can you complete today, what do you have the energy to accomplish right now? When your invisible suitcase is full, STOP. Don't overfill it, don't do more than you are capable of at this moment. Everything else can wait. Taking care of your health is the most important thing. Most everything else can wait.

• Ask for help. Being an independent woman, it is difficult to ask for help. I am the helper. I am the one who people go to for help. But we all need help. It is going to be difficult in the beginning to recognize your limits and ask for the help you need. Remember a support system is vital when going through a chronic illness.

• Have your safety plan ready and accessible. At first it seems daunting and a pain to have to consider what you would do in the event of an emergency. But it can be a relief, a load off of the mind. Knowing what you will do in the event of an episode or what a loved one should do is vital to your health and wellbeing. Start simple. If you carry an emergency kit on your person, be sure to have directions for how to use each item and a list of numbers to call. Your plan can be as simple as, call 911 in the event of an emergency or to be as detailed as a written plan or medical directive.

These are just a few very basic tips for navigating chronic illness. I pray that this reaches the right person and that God uses this information as He needs for His Kingdom!

I am so excited to write The Art of Alpha-gal blog and watch God grow it, me, and each member who finds us! I hope that this reaches you where you are at. I pray that it can help lighten your experience with a diagnosis that can seem detrimental. That this blog can show you, slowly but surely this disease gets easier and more manageable. And with the right support system and some good food recipes there's greener grass on the other side..... Until next time. Lisa

Disclaimer: If you are having an allergic reaction; please seek help from your medical provider, go to the ER, or call 911 if it is emergent. Alpha-gal Syndrome is a life threatening allergy. Even if you do not have a reaction right now you could have a reaction in 2-6 hours. Please do not eat foods that are going to cause an allergic reaction. Any reactions I have had were before I was diagnosed or from hidden AGS that I didn't know were present in a food.