This last year I just haven't been great about posting anything. I think because this part of our journey involves me working a lot more outside and admittedly I am just tired out when I find a minute to sit.
I was laying in bed last night thinking about all sorts of great things to post today, and of course once the coffee was brewed and I was sitting in front of the computer I have drawn a complete blank.
Over all I would label Abby stable, and of course while I dream and plan and hope that she will get better, I am also learning to be thankful for stable. It has been about 1 1/2 years at the new property and we have seen subtle improvements. Patience to see what else may come is tougher for me then for Abby. In the back of my head though I worry. It has been our experience that the first 2 years anywhere tend to be the honeymoon period for her mast cells. As if it takes a couple years for them to assess new exposures to decide whether to react, generally they have started to react and every few years as we watch her start to get worse and we get the itch to move again. We are some of the fortunate, we have figured out food, environment and lifestyle that help her feel her best and allow her to use her good days in her own way to find happiness, and day after day she continues to always surprise us in the small pleasures she reminds us about, the little things we forget as we get older and busier that truly are the most important. The delight she takes in my stories about what our chickens are up to(yep everyone is named like a pet), the good times when she is up to wandering over to the chickens to enjoy their antics. As I find wild foods on the property to forage and bring them in for everyone to learn about and sample. When she has bad days, or bad weeks or even bad months we know we have the tools to power through them, the patience now to know the good days will return. For as gentle and patient as she is I am secretly delighted she has inherited my stubbornness, once she decides on a path she sticks to it, and her path is to preserve her health and create a life that she can learn something new daily to find joy. Pretty special.
I still read medical articles daily and it continues to forge and shape my opinions about what exactly went wrong for Abby's body. I haven't paid as much attention to what is happening in Texas any longer, it is clear this just isn't the best place for rare diseases. One bright spot in Houston is that Baylor does have a Geneticist who is a specialist in EDS so perhaps one day there will be equal passion for Mast Cell disorders and Mito.
Epigenetics, microbiome, mast cells, t cells, mitochondria... each tiny bit is cogged and connected to the next theory. Each time something new is learned about any part of our body, it changes what can be learned about the next. There are still more with Mito that don't have a known gene mutation then do... while some are clearly secondary other's like Abby who have had symptoms from birth aren't as clear cut. There is definitely a huge swing in Medical community to rely on genetic studies only, without a known mutation you are "fine", even when you aren't. The good old muscle biopsy is still relied upon by many(especially non-mito knowledgeable Drs.). It is an interesting and rapidly changing time in medicine, which is good and bad. I cannot help but think "One day you are in, and then one day you are out" (Thank you project runway). It certainly is not improving care for complex patients right now but hoping that it will help and not hinder sooner then later.
There are days I am almost willing to accept that perhaps the Mito Depletion has always been a part of Abby. It would explain all the problems she had as a baby and toddler. Then other days I still think that the problems she had as a baby were a myopathy of her own blend plus Mast cell issues and after years of exposures and not protecting her it took it's toll and caused the Mito Depletion.. Of course either Mast or Mito could explain GI issues or heck, even EDSIII. Her immune system issues are common enough in the Mast, Mito or EDS populations. The kidney issues could be the result of years of ANA from the Mast, or could be the Mito or could have been caused by medication damage even years ago. I could chase my tail in circles daily and often do trying to figure out where to try to unravel the mystery to help her best address what we can to make the biggest positive impact. Then the fact that radically changing her diet and environment has had such a positive impact, if it were just Mito that would not be the case, or would it? We know the keto diet can stop seizures in Mito patients, so that would make the changes we made for Abby as likely, or not? Whether I like it or not she has Mito but if it is secondary it would explain more.. or maybe not. Nothing is certain and that frustrates me. Still too many unknowns. What this journey has taught me that is certain is that as far as chemicals in our homes, our food and our medicines it is true that less is more. The research is out there now showing the negative impact even destructive impact and disease causing impact on our genetics(epigenetics)and our microbiome. I think it will be slow going but I see hope. A lot of cancer centers now offer advice to go organic. To remove many chemical cleaners and scents in the home and used on the body. It has to begin somewhere. Thankfully research is finally starting to uncover the damages we have unintentionally created in our search for progress. I even read a research article the other day that talked about how for certain Mito patients they need more carbohydrates and subsets of the population can show progression if put on a more paleo styled diet.
Off and on we have toyed with the idea of seeing a few new specialists, to flip a few more rocks but we back off and stay focused on staying stable which is something we are fortunate enough to be able to control at least somewhat.
Everyday I thank my lucky stars for my "Momma gut". Had we blindly trusted and treated Abby medically in the way that many Drs. recommended I doubt she would be alive today. The path we opted for was extreme (for us and many would agree)but our gamble paid off. I hate that it did not fix her. I hate that she has to rely on us to care for even many of her very basic needs, but I love that we can and we did make a positive difference for her, we are thankful. Considering what we were facing 5 years ago, the fact that she is stable is a miracle in our book. Each day we continue to strive to improve the quality of her environment, it keeps us moving forward.
Hoping everyone has a very special Thanksgiving this year, our Country has much to celebrate and give thanks for this year more so then ever.