Looks like I came here again just to say how much I absolutely suck at keeping up with my blog. 😒
Just kidding.
Well, I have quite the life update for ya'll.
So, if you have read any of my past posts, you know that I've been dealing with autonomic dysfunction for about a year and a half now. It's a journey that hasn't been fun to say the least. At the beginning of this year, I started seeing a psychiatrist due to the relentless stress this invisible illness has been putting on my body. I also got diagnosed with mild sleep apnea this year as well and now I sleep with a CPAP machine. The psychiatrist put me on Cymbalta three times a day and it was rough adjusting to the medication at first, but once I adjusted to both the Cymbalta and the CPAP, my autonomic episodes have become less severe in intensity. Unfortunately, I'm still having them and the frequency and duration varies. However, for the most part, they usually don't get too intense but the lack of energy has been so awful that I've been bed bound a lot which has lately prevented me from being able to go to work. THAT'S A HUGE PROBLEM!
My family doctor has truly been a saint at helping me through this. It's very difficult to find doctor's that want to take on this case due to the complexity of the condition. The nervous system can malfunction for countless reasons and it takes awhile to pin point exactly what is causing it to freak out and want to shut down. I've already been denied by a geneticist and an immunology specialist, so there's that. My primary found a genetics company that is in the process of sending me a testing kit to bring to the lab, so they can draw my blood and test me for Ehlers-Danlos syndrome which is a 17 gene analysis. I start going for two hour infusions this Friday, every Friday for about a month. The first session is just lactated ringers and B12. Doctor wants to take it slow with additives so that I'm able to identify which vitamins will make a difference in stabilizing me. Next month, I have a consult with the neurologist and I'm hoping because they deal with the autonomic system, that they will be able to help me figure out exactly what is wrong...or in the very least, guide me in the right direction.
I still need to be tested for Mast Cell Activation syndrome as well. If all else fails where I live, I may have to travel out of state to seek help from a specialist but we are trying to exhaust all of our options locally first. I'm hoping that the infusions will at least make me feel stable enough where I can maintain working without needing to be out anymore. It's been rough for sure on that front. If the infusions help drastically, there many be a near future discussion with a general surgeon about placing a port for regular infusion purposes. From what I've been told, it's extremely difficult to convince a surgeon to place a port for the sole purpose of hydration and micronutrients. Here is the case that I'm building so far:
I've been dealing with this condition for about a year and a half now. I've had three E.R visits prior to starting Cymbalta and the CPAP which have helped considerably, however, I'm still having significant autonomic flares that as of late, make it difficult for me to go to work. I drink approximately 120 ounces of water daily as well as I have tried vitamin supplementation orally for my deficiencies to no avail. As far as my peripheral veins go, I'm a difficult stick and even more so when I'm dehydrated which has been a consistent battle. I also have very tiny veins as well. My GI tract is compromised which I believe is causing malabsorption issues. Another reason that I believe this to be true is because my stool often has fatty deposits around it which tells me that my body is not breaking down fats properly.
Now, if the infusion trial were to drastically improve my quality of life and stabilize me, my goal would be to bypass the GI tract in order to sustain properly hydration and vitamin levels to be able to function, especially if this were to be the only way to keep my quality of life maintained. I understand the risks associated with said port such as risk for infection. I understand this even more so than the average patient because I work as a Suture Specialist for a medical manufacturing in a clean room where everything needs to remain sterile. Also, each time I go for an infusion, it's a $200 co-pay and $800 a month is not financially feasible for me long-term. Self-administering infusions would be much more cost effective for me in order to maintain my health.
So yeah, there's that so far. This journey has been hard work.
I was thinking about renaming my blog to something like, "Chronically Tinisha" or something similar, but then I realized that I don't have plans of being chronically ill forever and I never really wanted my blog to be all about sad, depressing stuff but as of late, that's been my life. At least I'm being real, right?
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