Back in December I started having quite a bit of pain and problems with my pancreas and liver. My pancreas was visibly swollen, tender to the touch, and absolutely everything hurt to eat. It was a dull constant ache that no amount of heat, essential oils, or anti-inflammatory could touch. I went on a clear liquid diet for about 3-4 days around Christmas, and got an IV. This was incredibly helpful to let my digestive system rest a little bit and give my organs a break.
Alas, while it did give me a break it was short lived. Once I started to eat again and build back up on some supplements the herxes came on with a vengeance, primarily neurological at first. The night-time seizures and spasms would go on all night when I tried to rest, and I spent 3 days straight awake. I was the definition of a zombie. This went on for weeks, and my only source of sleep was short naps I would take during the day if my body allowed. The less sleep I got the more stress it put on my body as a whole and my pancreas and liver took a beating again. I fought pancreatitis and liver enzymes skyrocketing as it began to fail. Times were tough. All of this craziness took up all of January and February, hence my silence on the blog. I was in too much pain and had too much neurological strain to be able to look at computer screens or phones and process much. My brain was utter mush, that's the best way to describe how it felt.
The biggest trouble with all of this has been my weight, which has dropped greatly. Honestly I haven't got on a scale because I don't want to stress myself out, but my parents are keeping an eye on it for me. I know that right now I have no control over that, my stomach sometimes will not physically allow me to get food down so being upset about it won't help. A few years back when I had a seriously low body weight I found a supplement called Benecalorie, which helped a ton. However since then I became allergic to one of the main ingredients so I haven't been able to utilize it. We are currently on the hunt for some kind of meal replacement shake that is packed with calories but doesn't contain the usual suspects (corn syrup, sugar, soy, dairy). Pretty much all of the stuff on the market that packs the calories also packs other harmful substances.
This leads me to the latest update. I highly recommend that any patient with a chronic illness gets an Organic Acids test run by their Doctor. It is incredibly informative and can tell you a lot about what is happening in your body. I received my results recently and in a nutshell it confirmed that I am incredibly malnourished. I'm severely depleted in a lot of vitamins/amino acids/minerals, most noteably the B vitamins, CoQ10, Carnatine, NAC, and many more. Although I do take vitamins, since my stomach is in such bad shape a huge amount of those vitamins don't get absorbed to be used by the body. This is a problem a lot of people face when they have been sick for so long. The best way to get your vitamins and minerals which actually gets into the bloodstream is from actual food (the most bio available), but I have not been eating much the last 3-4 months so that hasn't helped my case. I can look in the mirror and know that my body is weak and desperately needs food, but it really hit home to see just how depleted things actually are. Right now my prayers are to find a way to build my body up that doesn't involve a feeding tube. I am fiercely fighting that notion.
A few other things I learned is that I am fighting two infections in my stomach. One is a fungal infection & the other is a bacterial infection. Together the two of them have set up shop in my small and large intestine, which I suspect is making eating that much more painful and adding to the general unwellness. I have dealt with stomach issues for a long time, but lately I have had some of the most brutal stomach aches I can remember. Between the infections in my stomach & the pain from my inflamed organs it has been hard to distinguish where one ends and the other begins. But I feel incredibly thankful to have the knowledge of what is causing at least some of the issues.
I can't begin to treat the infections in my gut yet because I'm just not strong enough. I don't have the proper nutrition or strength, and it's likely I won't get very far if I tried. So first things first I have to put on some weight and get some nutrients in me. That is task #1. Along with that task is accomplishing it without eating too many fats that would further aggravate my pancreas. Quite a delicate balance!
Shew.. I think that is the general gist of things. This is probably one of the more debby downer of posts, which is why I always hate writing them. I know that so many wonderful people follow along on this blog and they want to know what has been happening with me. So I want to write updates, but I also feel like I'm playing the worlds smallest violin as I type each word. I sincerely hope that none of that reads as pity, but is simply informative. I have been pretty much MIA and disconnected from life lately and well, this is why.
Thank you to everyone who entourages me, prays for me, and lifts me up in every way. It means a lot more than I can put into words. I know that God is in the drivers seat and he will deliver me from these trials the same way he delivered in the past.