To be Frank

Howdy ladies and gents, last update was memorial day. Really not sure how often to update people to be frank. Because my name isn’t frank, I’ll just keep updating when I can remember too. At least, I don’t think it’s frank.

As I’ve said previously I’ve been having more good days then bad, crossed that threshold. With that, however, its hard to see the limit—with activity and eating. I’ve also ran into new struggles as I am able to do more and for longer. (which means we are in the home stretch)

 A lot of people post-surgery at the 3-month mark have huge bouts of nausea, and for me I’ve been lucky in that regard. I do have some, but nothing, absolutely nothing compared to before surgery.

Let me get the good things out of the way before I explain myself into a tangent;

I was able to establish care with a new VA doctor after the whole “they transferred me and forgot” fiasco. I got blood work and met the new doc. While initial opinions were good both I “the patient” and he, “the doctor” have a lot of adjustments to do before we are up to speed. Let’s face it, he got dropped a post op patient that had a rare surgery on a very rare condition and recovering from malnourishment and 10 years of damage, not to mention the maladies that where present and worsened because of it. (Looking at you back pain and sleep.)

Just like meeting any new person or doctor, you begin learning how to communicate efficiently with them. Just like having to work with a new co worker and navigating and learning how best to utilize each other. Its just a song and dance and once you’re in the flow, its both better for the doctor and the patient. He can better understand you and help; you can communicate what you need to a fuller extent. Add on he has to learn of the past 10 years and I don’t know what he knows. Plus, I’ve told so many doctors the same things and its difficult to not speed up the explaining—which leaves pertinent information out.

What I did learn was the medical team all were happy to learn about this condition and understood that I had knowledge on it as well. They were open to listen or get informed when their summery of anything was different or off. That’s great in my opinion.

Also, full blood work came back and my Red Blood Cell count it back to normal, Hemoglobin back to normal, White Blood Cell is normal and the rest looked good. Vitamin D was the only low culprit. It’s just sitting on the results like “we are in Oregon, soooo, who gives? Go talk to Vitamin C”

Weight gain is good and there are appointments to see specialist to help strengthen my recovery while not making my back worse. Also to help with nutrition and guiding my body/brain back to normalcy with food. 10 years of negative reinforcement really does a number on ya.

So the rising struggles; limits, back pain, mental enforcement and inflammation.

So back issues had risen during my stent in the army and worsened drastically as I lost weight. When I say worsened drastically, I mean it. There is just no muscle to stabilize my core. So as I attempt to strengthen my recovery which involves core exercises, I constantly teeter on the scale of inflaming and spasming my back or strengthen my core and stretch my incision. On the extreme scale sometimes both abdominal muscle spasms and back spasms. With the pain as I’m sure many of you know its sciatic radial pain and the spasms are just the reaction. So if I don’t work my abs they get weak and my recovery continues to slow, but my back doesn’t flare up. But if I don’t do the exercises or stretches, my core weakens and my back weakens and has more chances to flare or spasm. Catch-22. If I don’t, it won’t and if I won’t it don’t. It’s some catch that catch 22.

(also watch Catch-22, It’s hilarious)

The Physical therapy should help guide me through that.

Inflammation, I’ve spoke of it before. Mesenteric inflammation. All the trauma that has happened in the area before the surgery and after the surgery has things all out of whack. You’ve got the missing nerves that where inflamed, you’ve got agitated gonglion from the changes and trama and all the organs and nerves that where used to operating one way are now operating in another. The result?

Diarrhea, lots of it. Then constipation, lots of it. The whole GI system is learning and its really easy to piss it rightly off. I can have foods that have inflammatory properties (milk, bread, spices, tomato’s ect) and be fine one week but then the next week it’s a disaster. Which makes it less eating less appetizing when your glued to the porcelain throne playing “Taps” with your butt hole. Last week there was a night I had the dragons breath from 9pm to 5am. In that time I considered becoming an astronaut by simply letting go of the sides and achieving escape velocity with my own flatulence. After nights like that every fart asking for freedom has to go through the 3 branches of the internal government and extensive questioning before being trusted.
I have spoken of the bad flare-ups when I overeat or its triggered by smell, that’s slightly different then the hell described above but by no means better. The body literally thinks it’s been poisoned for some stupid reason and locks everything the eff down. Spike in temperature, tensing muscles, extreme nausea, headache etc. It feels like you drank out of the wrong cup thinking it was the holy grail from Indiana Jones. It’s full meltdown…for like 15 minutes then it just goes away. Those have been happening less often though.
But in fewer words, the inflammation sucks.  

The mental side, I didn’t think it would be much of an issue. I was wrong. 10 years of mentally flinching from eating conditioned even my subconscious (or so it feels) Right after the surgery there was a rush—I guess is the best way to say it—of influx of eating and I really didn’t think about food. I just ate it and it didn’t hurt and it was awesome. But that’s not how I have been operating or eating for the last decade, its out of the norm. so after that spike there is that decline, not because I want to eat less but because of the thing I didn’t think id have to struggle with, my brain.

For years before I would eat I would weigh and measure what I was going to eat, what value I was going to get out of it—will it be for taste or sustenance—and how much I think I can manage pain wise for the repercussions. After a while that became a reflex or subconscious, so as I would or supposed to get hungry there would be that “flinch” because of the promised future pain. That flinch would quench that “hunger” feeling.  Sometimes it was more of a conscious decision but most of the time it was sent to the back.

Imagine every time you ate, someone punched you in the stomach. No matter what, it’s not the same pain as what MALS is but it’s the conditioning im trying to convey. Every time, no matter what you chose to eat or how much. After a while the decision of eating gets dynamic doesn’t it? You cant just stop eating because youd die. So you think about it when your body sends your brain the signal you then have to decide. Will this choice be for pleasure (good tasting unhealthy food) or sustenance (nutritional food) or do you decide to skip this meal and abstain from the decision until the next internal brain—body vote? See how it can easily become a viscous cycle? Eventually you don’t get the same feeling of hungry or cravings and you also start eating less. That’s conditioning, Negative reinforcement. You are now Pavlov’s dog and B. F. Skinner’s theory.

Naively or just misplaced hope, I thought that once the “figurative gate” is lifted, I would just eat all the time. And that’s where I now struggle. Now mind you, I am gaining weight and eating more. Just not nearly enough and its still and obstacle.

So now I struggle with remembering to eat, and when I do decide to eat, to actually be hungry. Because in a blink of an eye that switch that has been reinforced now makes me not hungry or in the mood to eat. You can set alarms, or force yourself to eat but if you’re not hungry and your brain is telling you off, its not a fun time.
It’s doable but not having a fun time is how the brain got here in the first place isn’t it? You can easily make yourself nauseous by forcing food or overeating. Do that too often and you now are just reinforcing that association with food.

I really hope I explained that well. It’s something that’s obviously both subconscious, conscious and dynamic so its hard to put into words.

They are times that I feel in total control and can maintain that enthusiasm to eat and enjoy the before during and after but it’s not every time. Dr hsu did warn me about this retraining and that it would be difficult. I must not have taken him seriously about that front.

The pain, back and abs even the gut stuff is tangible and attackable. But this mental side, this bugger is a whole other level I was not prepared for.

Hope that paints a picture of understanding. Apologies for delaying the post. I had this mostly done but have been in a funk this last week as past pains not related to the stomach resurface.

Thank you to everyone still concerned or cheering me on. On for following me this far. I hope we can make something out of it.
Small caveat;
Since the start of all this there have been 3,698 of you reading these updates and visiting this site with 5,703 page views. That’s not including Facebook, GoFundMe, the news and video interviews. All of you have been something else, really I appreciate it.