If you’re old enough you may remember when Baskin-Robbins used the slogan, “31 Flavors.” Man, I used to love their ice cream cones. Ironically I can no longer eat much of that frozen treat (or anything else these days), but I do get a kick from poking fun at my situation and the fact there’s at least thirty-one different symptoms I can experience throughout any given day. So now I just call my illness “31 Flavors,” because it’s certainly found a variety of ways to make my life a challenge.
But before I start talking a bit more in depth about all that stuff, I want to apologize for taking so long between blog posts. Because of the 31 flavors, it’s very difficult to even use the computer without getting sick. Gazing at the monitor tends to accentuate my nausea and it can create strong vertigo-like issues. It’s for these reasons I also don’t check e-mail anymore and I turned off comments for this entry, as I know I won’t be able to respond to everyone like I used to. In fact, this post has taken me four days to write, because of my difficulties.
Now, even though we’re already into the New Year, I hope you had a great Halloween and a wonderful holiday season.
Speaking of the holidays, since my local doctors were at a loss for understanding why my gastroparesis (paralysis of the stomach that prevents it from emptying properly) is giving me so much hell, I spent several days after Christmas at the Mayo Clinic. After being put through every imaging scan and invasive test possible, Mayo confirmed my stomach is shutting down and my small intestine is also including itself in the digestion debacle.
According to their scans, the stomach is 49% shut down and the small gut is 91% shut down. While performing an endoscopy on me (camera down the throat) they found oatmeal still sitting in my stomach (eaten seven hours prior to the endoscopy). Oatmeal was all I had for breakfast and the amount was no more than what would fit in the palm of your hand.
So, they diagnosed me with severe gastroparesis combined with a “global motility disease.” Gastroparesis is pretty rare in itself, but when you include the small intestine in the scenario you move into a whole other category of rare illnesses. Damn, when you consider the astronomical odds why couldn’t I have won the lottery instead? LOL.
Leading up to the Mayo Clinic visit my weight was still dropping despite (the extremely painful process of) trying to eat (and digest) around 2,000 calories per day. By the time I stepped on the scales at Mayo I was down to 134 pounds, and I’m now in the 120s at a height of just over 6 feet; bringing the grand total of weight lost to almost eighty-pounds since March 2011. Now my Halloween props officially have more meat on their bones than me.
Since I’m not able to consume enough calories to stop the weight loss there are only three options available: a pacemaker attached to the stomach, a feeding tube inserted in my small intestine or being fed through a vein (called TPN).
My Mayo Clinic doctor keeps in touch with the nation’s leading expert on gastroparesis and motility diseases and neither one of them feel a pacemaker is worthwhile, because it primarily helps with nausea (one of the 31 flavors), but it does little to actually empty the stomach. Also, since the small intestine’s involved, the pacemaker won’t help the gut out, so I’d still be left with major motility problems beyond the stomach. That doesn’t sound like a winner to me.
The next option of the feeding tube is usually doable for someone who only has issues with the stomach, since the tube is surgically inserted in the small intestine. However, with my small intestine being majorly impaired a feeding tube will do little to no good. So there’s no point in going through that surgery and painful process either.
And that brings me to the last medical option of intravenous feeding or TPN. While IV feedings might help a bit, it’s doubtful they can provide enough calories to help me gain weight; especially considering I was taking in 4,000 calories per day four months prior to the shut down of my stomach and intestines and my weight still wasn’t budging. Something appears to be seriously wrong with not only my GI motility but also the body’s absorption of nutrients through the small intestine.
TPN is also notorious for causing major infections and at my already very low body weight I’d be a candidate for one infection after another. At best, intravenous feedings would only prolong the inevitable while continuing to impact my health, causing me to be around even more doctors and hospitals. And at this point I’ve had my fill of both, not to mention the daily suffering that goes along with this disease.
So, after a lot of soul searching, heartfelt discussions with family and friends, and research, I’ve decided to explore a fourth option: to cut my food intake down to a very small amount (thus alleviating the most severe attack symptoms) and let nature take its course.
As you may know, I have a strong belief in the survival of consciousness after death, and I also believe in the concept of natural selection. Nature’s given me the signal — it’s my time, and intuitively and instinctually I’m feeling nature’s correct. I’m not at all scared to explore this fourth (and what I feel is the best) option. In fact, I welcome it, as I’ve been at my wits end the last year trying to deal with this incredibly cruel illness.
Initially, it was my intention to fight this thing for all I could, and I feel I’ve done that — trying many different ways to overcome it. However, through my efforts, medication, and lots of medical consultations/tests, I found this is a battle that can’t be won or fixed – it can only be given band-aids. And band-aids are crummy “solutions” when you have a gaping flesh wound desperately in need of stitches. Not only that, but the more you fight to eat and drink, the more you suffer because food (and the inability to move it through the digestive tract) is what causes the major attacks.
This illness has not only taken away my ability to eat and drink what I want (The inability to drink my fill of fluids has killed me the most as I LOVE water.), but it’s also marginalized me in terms of being capable of pursuing my passions and purpose in life. I used to be someone who possessed an extremely strong work ethic putting blood, sweat and tears into all my activities. I was an avid bodybuilder/exercise fanatic, and someone who wanted to change the world (or at least my little corner in it) through being of service to others.
Now I’m reduced to spending my days and nights in a reclining chair due to ongoing abdominal pain, dizziness, nausea, blackouts, fatigue, etc. and little means for replenishing fluids or calories burned without suffering from attacks. Basically, my quality of life has diminished so severely that I’m completely ineffective. It’s for all these reasons (and so many more, too many to list in this post) that I’ve happily accepted and peacefully relaxed into the fourth option as being best for me.
I feel I’ve lived a good life and I’m now ready to see what adventures lie beyond the veil. Hopefully there’s a nice flowing stream waiting on the other side with my name on it where I can drink my fill, rest up and get back to work.
As for Season of Shadows, it’s going to remain online. My family will be tending to the care of the site. There won’t ever be any new updates or blog posts, but everything will stay as is for the next several years.
In closing this entry I would like to mention once again the wonderful work being done through Unicef’s Tap Project. Due to my love affair with water, my ongoing struggle this last year to drink H2O, and learning how badly so many people are suffering from a lack of clean drinking water; I’ve become a strong supporter of the Tap Project. They are providing clean sustainable drinking water to people in areas where it’s normally unattainable. If you have the ability, please consider helping this extremely worthy cause and please ask your friends, family, coworkers and even strangers to do the same. For more info you can visit the H2O section here at SOS and TapProject.org.
I want to thank all of you for your ongoing support of Season of Shadows and for your wonderful friendship the last five years. But I’d especially like to thank Goldie, Camile and Kieran, Autumnforest, Atrueoriginal, Julie, Barry Huddleston, ssflipo13, Damian, SKAustin, Ethan Black, The Frog Queen, Pam Morris, Paul Melniczek, Stephanie D., Donna, Doug, Matt, Adsila, Andrea, and Annamarie Dodge. You guys have been tremendous friends and I feel blessed to have known you! I hope your days are filled with joy and your Halloween nights with spookiness.
I won’t say goodbye, but instead I’ll leave you with the last three lines from Max Ehrmann’s poem, Desiderata, as well as my favorite clip from the film, Mr. Magorium’s Wonder Emporium:
“… Be Gentle with yourself. You are a child of the universe, no less than the trees and the stars; you have a right to be here.
“And whether or not it is clear to you, no doubt the universe is unfolding as it should. Therefore be at peace with God, whatever you conceive Him to be, and whatever your labors and aspirations, in the noisy confusion of life keep peace with your soul. With all its sham, drudgery, and broken dreams, it is still a beautiful world. Be cheerful.
“Strive to be happy.”
Source: YT user, StevewithUnited