Health Update

Here is a health update for those of you who follow my health journey. I have been very bad about not calling family or close friends to keep them informed. So sorry! I haven't been processing bad news as well as I usually do and haven't really known what to even say when asked about my health lately.

I had reached a point where I was feeling pretty healthy overall for almost a year. I felt almost "normal". I still had some fatigue and other issues, but it was do-able. I was so thankful and appreciative for that time of health. It was the best I had felt in years. I was going to work, shopping, adventuring- doing life! I had always identified as a "sick person", but I was finally starting to see myself as a pretty normal and overall healthy person! Over the last 9 months or so I've started feeling pretty bad again. It started with a few colds, then my heart issues flared landing me in the hospital a few times. I developed pretty severe anxiety and panic attacks at that point. My dad had passed away about six months prior and the shock was finally wearing off. I was starting to really feel that grief and having to deal with heart issues reminded me of him even more. Since he had just died of health issues related to his heart, I panicked knowing that my heart wasn't beating correctly. For about three months or more, I dealt with getting my heart back healthy. I wasn't able to teach dance or even go to work much. I ended up being at home or staying with my mom the majority of the time. If I tried to push through, I ended up with terrible runs of tachycardia and PVCs. We finally found the right combinations and doses of medication and my heart returned to beating normal the majority of the time. Of course, it still flares but stays pretty steady overall.

I have had GI issues since I was diagnosed with endometriosis at age 13. The recent heart medications really took a toll on my gut and threw it out of wack even more. Over the summer, I tried to get back in the groove of going to work more and getting back to normal, but my gut and fatigue were getting worse. The cyclic neutropenia magnified again, as well. This causes my neutrophils and white blood cell count to drop, my monocytes and sometimes lymphocytes to increase, extreme weakness, an overall "sick" feeling, fevers, and a very weak immune system. When my counts are low (usually about a week per month), I am supposed to avoid crowds and wear a mask whenever I do get out. I have ditched the mask, because 1) it's really hard to breath in those things and 2) I don't want to scare any of the kiddos at work. I just stay home on the super low days and try to not get too close to anyone on my moderately low days. Unfortunately, kids have LOTS of germs and they aren't the best at keeping them to themselves! Gotta love em (; The only treatment option I have is Neupogen injections. They have some pretty nasty side effects and haven't been the most effective for me, so I just wait out my drops.

These issues led me to a new doctor that specializes in functional medicine. With functional medicine, the doctor integrates traditional medicine with natural medicine, nutrition, and lifestyle. They deal a lot with patients that have chronic illnesses and look at your body as a whole instead of just one part or issue at a time. I was first put on an extremely strict, four week, elimination diet- this meant no gluten, dairy, soy, processed food, additives, sugar (unless naturally occurring in fruit), peanuts, nightshades, and a few other foods. She also performed various tests. Two weeks in to the elimination diet (this past Friday) I met with her to review the test results and hear the start of our treatment plan.

The test results were not what I wanted them to be. I had a lot of labs pointing to inflammation, future heart issues, and a tired body.

I was diagnosed with reactivated EBV. Most people have the EBV (mono) virus in their body whether they have actually had the mono sickness or not. According to my labs, I have had mono at some point (before 2016) but we probably just thought I had a cold or flu in combination with my other health issues being flared. Your immune system stores the virus away and keeps it from bothering you again, but it never completely leaves your body. Unfortunately, the EBV has overpowered my immune system and become active in my body again. My numbers are very high. Surprisingly, this can be very dangerous, especially if left untreated. It can wreak havoc on your body causing a bazillion symptoms. With the original mono infection being so common, I never would've thought that the reactivation can be so rough. The goal is to boost my immune system enough to fight off the EBV again, but if that doesn't work we will have to try stronger medications. Our hope is that we can overcome the EBV and that my neutropenia will improve once I'm not having to constantly fight this virus. I am trying not to look at the "what if'

s", especially "what if we can't get the EBV to return to an inactive state" because that outlook is just too intense and scary right now to be honest.

I also found out that I have the MTHFR genetic mutation with two copies of the A1298C variant. I still do not fully understand it, but it causes high levels of homocysteine, low levels of certain vitamins, and effects the way your body repairs itself and gets rid of toxins. It can lead to many different health issues. Although it is not conclusive, the genetic mutation has been linked to a lot of the issues I have- including endometriosis! Hopefully by being aware of this and treating it, we will see a big improvement in my overall health. It's in my genes, so it obviously isn't a curable thing, but there are things that we can do to help. The doctors have speculated that many of the issues I went to the Mayo Clinic for (a lot of autoimmune-type symptoms) were caused by the HPV- Gaurdacil preventative vaccines I received not long before. This now makes sense knowing that my body cannot process vaccines effectively. THIS IS NOT A VACCINE DEBATE POST- DON'T PANIC!!! LOL Unfortunately, MY body just can't tolerate them with this mutation. So far the treatment for MTHFR is an overall healthy lifestyle, no more vaccines, additional supplements, lab work, and avoid chemicals as much as possible. I have always had a goal of being more clean and organic, but now it is a necessity.

The doctor ran one other genetic test, as well. It is the ApoE genotype, and it is a genetic risk factor for dementia, Alzheimers, stroke, and cardiovascular disease. Since these run in my family pretty strong, the doctor felt it was important to test for this. Unfortunately, it came back positive, as well. Between the genetic risk, the family history, and the way some of my other labs were, I am high risk. This has been a scary one to take in after watching my dad and family go through these things. Although it's one of my biggest fears and I probably would've rather not known, at least now we can be very proactive in keeping my heart and mind healthy.

Side note: While this was not tested for recently, I thought I'd throw it in since we are talking about my genes. After my mom was diagnosed with breast cancer, I did get tested for the BRCA 1&2 genes (think Angelina Jolie!). It can back negative!!!!

So for now, I will be making a lot of lifestyle changes, resting a ton, doing what I can to keep my spirits lifted, and trying to get out as much as I am able. Unfortunately, I am mostly working from home and not able to go to the studio very often. I miss my kids and families so much and cannot wait to be back full time! I am very blessed to have the opportunity to work at home while I'm sick, and I couldn't do it without the best team at RDC. Thank you for bearing with me and being patient through this time. I do what I can when my body allows. Hopefully now that we have more answers (although, not the answers we were wanting), I will start healing soon.