Friday, July 1, 2016

Perspective at 38

Tomorrow I turn 38. This is a big one for me, and that has nothing to do with how close to 40 it is. I moved into my own apartment when I was 19, meaning I have lived "on my own" for half my life. My intense digestive troubles began when I was 19, therefore turning 38 also means that I have been living with this discomfort for half my life. Half of my time here on earth, I have struggled with my physical and mental health. For half my life, I have been meeting with the same GI doctor and trying to figure out (A) what is wrong with my guts, (B) how to make it go away, and (C) in the absence of being able to get rid of it, how to at least alleviate symptoms so I can have a decent quality of life. I'm happy to say that we have been able to figure out (A), so we know what is wrong. We have tried lots of (B), things to make it go away, but none has been the magical fix-all, therefore we focus hard on (C) finding workarounds so I can at least function (mostly) normally. Quick background on my issues, then we'll put that part behind and focus on what I really want to write about...hope, and maintaining it during the bad days.

For those needing to see the medical diagnoses...here you go. There are several conditions that I have been diagnosed with over the last 19 years:
GERD (Gastro-esophagus reflux disease, or severe/constant acid reflux with erosion of the esophagus)
IBS-C (Irritable bowel syndrome with a tendency towards constipation-kind of a generic term given to guts not working properly for no visible/known reason)
SIBO (small intestine bacterial overgrowth)
Gastroparesis (slow-moving stomach muscles so food takes longer to process)
Digestive Dysmotility (neurotransmitters in my intestines don't fire correctly, so everything moves through my system very slowly)
Lactose Intolerance (inability to properly digest lactose in dairy products)

To bottom-line everything...I am constantly excessively bloated, full of trapped air and gas, constipated, often nauseous (thought I never throw up), can feel food stuck in my system as it tries to move through. I am prone to low blood sugar episodes, even if I've just eaten. Food takes a long time to reach where the digestive juices are already working to break it down, so I get weird episodes of shakiness, light headed, sweating, salivating, and nausea as my body is ready to digest food but there isn't food there yet. I am tired all the time, because when I'm sleeping my body is working so very hard to digest food, and I'm prone to insomnia. I have depression, both from low levels of serotonin and because it's mentally draining to feel so uncomfortable all the time. I am forever trying new medications that will help my digestive muscles contract properly, and then dealing with side effects from those. I avoid a lot of foods because I know they will not digest well, and yet even when eating "right", I feel awful. I continually learn about new foods to avoid (look up FODMAPs...this is my current undertaking, to eat only low-fodmap foods along with all the other things I avoid), and would prefer to just not eat at all. My body doesn't prefer that though, and is quick to let me know when I must eat. Now. The combination of disorders I have make eating a catch-22, because something that is good for SIBO is bad for Gastroparesis, or it's good for GERD but full of dairy, or, well, you get the idea. 

Anyway, that's all I'm going to say about what is wrong. I don't share it to garner pity or sympathy, but to let you know, honestly and transparently, what I cope with every day. I share it because the part I want to focus on is this - I do cope. I do continue to live, to thrive, to fight the discomfort and to maintain hope that someday, the miracle fix-all will be discovered. I am not alone in my battles; do a Google search on any of the one diagnoses and you will find tons of websites that are dedicated to it. Start talking about it with a group of people, and you will find that somebody in that group has experienced at least one of the issues I have. Often, you will find somebody that has a more difficult diagnosis to live with...something more serious like Crohn's or Colitis. I feel blessed that my issues are fairly tolerable to live with.

And I do live. I live fully, and looking back over the years, I see so many blessings. I see so much living, loving, laughing. I can reflect on years 19 through 38 with joy, with awe, with pride. In those 19 years, I fought against the drain of never feeling well, and I met my soulmate and married him, I birthed two beautiful children, I worked and continue to work, even going full-time a few years ago. I am blessed to have an understanding husband who never makes me feel "less than" when I'm not able to garner the energy to get off the couch, or when my system is so distressed that I have to just lay low for a few hours and not be bothered. I am blessed to have understanding bosses and co-workers who allow me the flexibility I need to be able to take care of myself. I am blessed to have children who watch what I'm eating and remind me when it's something I shouldn't be having! I am blessed to have family and friends who accept me as I am, and understand (or pretend to!) when I'm not feeling well enough to be social. I am blessed with the inner strength, confidence, and determination to continue living fully for the next 19 years, even if I spend them in physical discomfort. I am blessed to always have hope, faith, and an understanding that my journey is not one I am walking alone. Onward to the next 19 years of living!