Autoimmune – A Moving Target

I have spent close to 6 figures on medical costs since I have been 18. Through all the testing and treatments, I still have no specific medical diagnosis. As I try to play whack-a-mole with my symptoms, they just continue to evolve.

I have had “odd” medical issues as long as I can remember and even before I can remember. When I was born, I was 3 weeks early and the doctors thought I had jaundice. I spent time in a little light therapy booth when I first came home.

I was around 5 years old when I had my first allergy testing. I had fevers and ear infections all of the time.

By 10 I was experiencing migraines, and going to different doctors to try and figure out the cause. I took out sugar and caffeine from my diet, I got glasses, and even starting going to the chiropractor but there were no answers, and I got no relief. So at 10 years old, I started regularly taking 800mg of Ibuprofen.

At 12, I was put on my first antidepressant, at 13 I have shingles. At 14 I am put on hormones with estrogen (I later learn I have a hormone imbalance, with a progesterone deficiency and cannot even take estrogen) At 15 I get Mono and will go on to get it 4 more times because apparently I have no adult immunity to that virus. At 16 I start having some GI issues and dairy was identified as the culprit, and my first food intolerance is finally discovered.

At 17 I have precancerous lesions on my cervix and have surgery to remove them. At 18 I develop bladder and kidney issues. I get multiple kidney infections and kidney stones, and I pass 5+ stones in 8 months. I have extensive and invasive testing with no answers other than one CT scan of my kidneys showed a cyst on my uterus. I’m constantly on antibiotics, sometimes getting shots of penicillin in my back. Doctors suggest I limit my calcium intake and stop taking Ibuprofen.

At 18  I found myself in an abusive relationship. I get a few concussions and have some damage done to my face including 2 of my teeth. In my early 20’s I finally leave that relationship but the migraines start again. 

<CPTSD is a wicked thing and I am only now beginning to understand its impact on my ongoing healing, but it has had a hand in the deterioration of my body>

My broken teeth had abscessed, and the pressure I was experiencing  in my face created a perfect storm, causing my migraines to explode. I get to a dentists and an ENT (Ear, Nose and Throat) where I learn that I have a deviated septum and collapsed nasal cavities from the trauma done to my face by my abuser, and that because I waited so long to get to a dentist because I did not have insurance, my teeth were beyond saving. My migraines would have me down for 2-4 days at a time, once or twice a week. I was on an internment leave of absence from work, using short term disability to try and supplement my wage loss. So at 23 I had both teeth pulled, a surgery to drain my sinuses and essentially “re-drill” my nasal passages. Those procedures  almost immediately helped to resolve that pressure in my face that was triggering migraines. I get another round of allergy test and start doing immunotherapy. After healing and starting the immunotherapy I get better.

For the first time in YEARS I start feeling better and start trying to get my life together. I buy a house, get married and then boom, major GI issues again. At this time I am under the care of an OB GYN. I was only seeing her for fertility issues, but I share some of my GI complaints and some of my other medical history with her and she suggests I cut out gluten. I felt better within a week of cutting out gluten so I took out my second food group – Wheat and all things gluten. Now I am 25, gluten free and “fake” dairy free – by this I mean that I did not drink milk or have  ice cream, but I still ate cheese and consumed products with milk and dairy ingredients in them- At this point in time I am exercising daily and I am feeling better than ever.

Then comes 28 and my life falls apart in many ways. For one, my then husband admits to cheating one me our entire relationship. So to help with my grief and deep depression, I get back into counseling and get back on anti-depressants. My then husband also confesses that he lied about wanting children and he does not want children.  I always feared something was up with my reproductive organs so I decided to go back to a fertility specialist and find out once and for all if I can even have children. The way I saw it was, if I could not have children, there was one less thing to fight about in my marriage, but if I could have children it was looking more like divorce. Having children was something I have always wanted so I was not willing to give that up.  He ends up accompanying me to my visits and tells me he has changed his mind and he wants to have children and wants to participate. So while we are testing, we are also trying to conceive and the clinic puts me on hormones. Long story short, the clinic closed before our first IUI ( Artificial Insemination) I did not get any definitive answers from the months of testing and treatment, but I was told its about a one and million chance for me to get pregnant naturally. We decided to take a break from trying and treatment so I immediately drop the hormones.

I was a FUCKING NIGHTMARE on those hormones, it was a horrible experience and I was happy to be off of them. I did start a low dose non-estrogen birth control in hopes of taking it for a year and then getting off of it to see if that would result in a pregnancy – as it does for so many other women. My marriage continued to deteriorate and just 3 months after my 31st birthday I was divorced. I was hormone fat, miserable and more depressed than I had ever been. 

I put my energy into eating better, I started exercising daily, and gradually started to get off all of the meds. I started getting out in my community and making new friends. Then at 33, COVID happens. Is it a coincidence my allergies started in February of 2020 after being around family that were potentially exposed and or sick from COVID? I don’t know if I will ever know, but what I do know is that my life has never been the same. After all I had overcome, I had no idea food would be the thing that comes in causing the most problems, but then again maybe it was food all along.  I spend 2020 on immunosuppressants three times, taking Benadryl all day every day. I was having to  wake up early in the morning so I could put ice packs on my face to get my eyes to stop swelling so I could see. For the first time in my life I experience anaphylaxis so I have to purchase  EpiPen’s, which are $400 BTW! And they are only good for 12months. I was getting rashes, hives, bloating, diarrhea, vomiting, headache, chills, and  body pain. My injuries were flaring up and not healing, my piercings were trying to reject themselves, and after 3 years of having it in, my Jaw rejected one of my dental implants…the list goes on. In December of 2020 I hesitantly decide to go back to get more allergy testing done and this round of testing shows now have over 20 foods allergies! This just did not seem right! How can this be happening? WHAT THE FUCK IS GOING ON?!

The doctors again, have no answers. 

Everything feels like a risk, eating is like a mine field. Will it cause a 3 week reaction? Will I need to use my epi-pen, what else could happen?  And those are concerns I have when I am eating at home, paying close attention, reading all the labels, and making all of my food. I honestly worry about what happens when things re-open. How am i going to be able to go out with friends, how will I travel? Most of these food allergies are barely a year old for me. I already had my mental health issues, hormone imbalance, environmental allergies and a handful of food intolerances, but nothing like today. I am essentially a Vegan who eats gluten free, nut free, sunflower and sulfite free and more….

Members of my own family, my “friends”, co-workers etc  have all mocked me at some point, and some still do. t blows my mind that people would think anyone would choose this. Like I don’t think having mental health issues, a hormone imbalance, over 20 food allergies, and 20+ environmental allergies isn’t fucking ridiculous. Like, Bruh ITS IS ridiculous I know way better than anyone how fucking ridiculous it is. I have read a lot of blogs about people who feel alienated by their social networks because of this mockery and I hope the more people talk about it, the more we can remove the stigma.

If I have learned anything, it is that western medicine is not going to help me and most people are not going to understand or believe me. And I have to be OK with that. We have a disease management system in the US, not a healthcare system.  Over the last few years, I have started working with counselors, life coaches, spiritual coaches and health coaches to access resources that would actually help me. 

My allergist and immunologist, can help me test what my body reacts to, but they can’t give me any information on diet and nutrition outside of elimination diets. I was feeling lost, alone, alienated and depressed.

So I decided to take it upon myself to learn about health and wellness from a holistic perspective. I knew lifestyle changes had made a HUGE impact on my life so far, and I whole heartedly believe that holistic lifestyle changes are the key. Its food, but its so much more than food. It’s the people in your life, your friends, you family, your romantic relationships, career, finances, joy, spirituality and so much more. Having a balanced happy life will improve your health and I am going to find a way to share this message so we can heal and change the world together.

Stay tuned for more!