Hi. Last day of 2017 and I’ve blogged almost nothing at all this year. I regret that, but it’s been the toughest year, toughest two years, of my life and I haven’t had the ability to blog or even write book reviews like I once did. I started an “Update” blog about 6-7 weeks ago, but never got very far, and have been horribly ill for a week, and don’t have the strength to finish it, but I’m determined to write a blog post for 2017. I’m including what I had gotten done last month at the bottom of this post, but am just going to give a brief synopsis here to let those of you still reading this blog know I’m still alive.
2016: I had 8 minor surgeries, most on my back. I had at least 33 tests and procedures that were diagnostic tests for my stomach ailments alone, the final result being I was ultimately tested for the rarest of diseases into 2017 with no results, leaving the doctors to discard me and wish me the best. I also had at least two strokes in the fall, the second of which was pretty major and continues to impact me to the present. Before the strokes, I had lost the ability to drive, and became largely homebound except for 2-3 medical appointments a week, every week, for which I took either a city disabled van or taxis. I had to start walking with a cane in late spring. The strokes impacted me in various ways, as my memory started to fail, and I lost my balance and coordination, resulting in numerous, regular falls. I was also on 3 of the 5 strongest pain medications in the world, whose side effects messed me up, but none of which really helped me. I stopped responding to virtually all pain medications of any type around November 2015.
2017: This year, I’ve only had two minor surgeries for my back, both failures. I was scheduled for a third, but the surgeon refused to do it, saying it’d be useless. Gretchen and I later met with the chief surgeon who said even a major surgery would not only be ineffective, but counterproductive, and he refused to perform any. He recommended as my only realistic hope an experimental and dangerous brain surgery that is hard to find and obtain. More on that in a minute. Before that, I started to experience more falls and greater memory impairment and even total memory loss, progressively, day by day. We explored getting me a home health aide, part time, but can’t afford one. I’m now wearing one of those fall alert pendants. Gretchen’s worried she’s going to come home from work and find me at the bottom of the stairs with a broken neck. I started having bizarre “episodes” — don’t know what else to call them — beginning March 31, in which I woke up and started wandering around the house at 3 AM, disoriented and unable to control myself, resulting in 15 falls, the last of which Gretchen witnessed as I tripped in the dining room and fell face and head first onto our hardwood floors, breaking my nose, knocking me out, and busting the hell out of my head. The pain in my head was unreal. I didn’t care about the nose or anything else. I refused to go to the hospital, even though four paramedics were there when I regained consciousness, working on me, and trying to convince me to go to the hospital. I don’t go to ERs. I had a horrible experience in early 2016 and vowed to die at home with dignity than go back to another damn ER. I tried to get a CT or MRI for 10 days, but no one would refer me for one without my going to the ER. Finally, on the 11th day, I went, had a CT scan, was told I had a severe, probable long term concussion, had possibly experienced some brain damage, and that was a joy. According to multiple doctors, I had already experienced brain damage with each of my strokes. My nose bled 24×7 from then into June, and the incident screwed up my neck and back, forcing me into home healthcare PT. My memory impairment and losses became much worse from that point on. I experienced more “episodes” like these in August and September, and have watched my memory deteriorate badly, as well as seeing my forgetfulness increase exponentially. It was about two months ago when this orthopedic surgeon stated I need Deep Brain Stimulation surgery, which has a 4% mortality rate, and which is available for Intractable Chronic Pain possibly only at Mayo and the Cleveland Clinic. One of my doctors put me on a supplement for memory loss/retention two months ago, and earlier this month, my neurologist put me on a hard core medication for severe dementia and Alzheimer’s, while allowing it’s possible I may be in the early stages on Early Onset Dementia. I am 51. I no longer expect to live to see, say, 54. And this drug he put me on has caused a very serious adverse reaction, or reactions, so that over the past week to week and a half, the symptoms have been so bad, I’ve honestly felt I was going to die several times, and today is the first day I’ve had the energy and wits to actually get online and do anything. I’ve simply been lying here trying to survive during one of the most hellish and painful weeks of my life, sick to death.
After those two depressing paragraphs, there were other things that happened in my life. In 2016, Gretchen and I created a startup that I poured myself into far more than I should have and it badly impacted my health. We decided, due to having to delay opening for business indefinitely while suffering tremendous costs and state taxes, to start to shut things down this fall, and I’m still trying to tie up loose ends, as I’m able to. Additionally, both Gretchen and I have started new side businesses, just to see how they’ll do, part time. Just really getting underway, but who knows? Gretchen’s oldest son was married last month in Maryland, so we made a long car trip to the wedding, which was lovely, but it was hard on me. Still, it would have taken a lot to make me miss that, although we didn’t decide I would actually go until the last minute. It was touch and go. Nonetheless, it was a joyous occasion. It was also good to see the rest of her family and meet some new in-laws.
Gretchen is busting her ass holding down the fort, working full time, having to do all of the errands and chores I once did when I was mobile and more able, and still find time for her side projects and to look after me. She stays very busy. And as limited as I am, I stay busier than I want to, mostly with technological projects that would take too long to go into. I’m worn out now. Sorry. I wrote more than I intended, but I just wanted to say I haven’t forgotten you folks out there, and I miss interacting with you, and if my health ever improves sufficiently, I’d like to resume blogging and book reviewing, but I have no idea if or when that will be. I hope everyone has been doing well, has had a good holiday season, and here’s to a good 2018 for all of us. Cheers!
Hi! I don’t even know where to begin. I haven’t posted a “real” blog post in nearly a year. It’s kind of stunning, because I’ve been blogging since 2003 and used to every day, but the past year and a half have worn me down until I no longer had the strength, energy, physical or mental abilities to continue doing so, and had to call a halt to it.
Lessee, for the past 3.5 years, my health has been unbelievably bad. Most of you know I have Trigeminal Neuralgia Type 2, a very rare, very, very rare, extremely painful head and facial pain disease, considered the most painful disease in the world, typically referred to as “The Suicide Disease.” I also have three other head pain disorders, including Cluster Headaches, which are also known as one of the most painful disorders in the world, and which I’ve also seen described as “the Suicide Disease” in some sources.
After having had a nice little break from that, my head and facial pain came back with a vengeance in the summer of 2014, but this time bilateral, which is unusual. I immediately had three minor brain surgical procedures, but I told my doctors they wouldn’t help, as this pain was different. I was right. Then, in early 2015, my back started giving me real problems again. Serious pain to match my head’s serious pain. I’ve had back problems on and off for six years, but like my head, it had been off for a couple of years, and this was an unpleasant surprise. I went back to my orthopedist and started seeing a rheumatologist, who told me I had “massive” amounts of osteoarthritis throughout my body and would need two hip replacement surgeries at some point in the not too distant future. Meanwhile, my orthopedist told me my DDD had gotten much worse, and I had other problems in my back as well, which I knew — spinal stenosis, a broken tailbone, nerve damage, etc. She sent me ultimately for six months of PT, but it didn’t help at all. In February 2015, sick of being far too overweight, I went on a massive low carb diet, ultimately averaging 6 carbs, then down to 4 carbs, per meal per day. I lost weight and it felt good. However, and I do think this was coincidental, about four months later, I started developing stomach problems that developed into a nightmare. At first it was just gas after meals, but then it was joined by nausea, and progressively advancing, stomach pain — incredibly severe stomach pain. So severe, it easily matched my back and head pain, each of which were at least a 10 on a 1-10 scale every day without a break. This happened over a period of months though, so I had no idea it would get so bad.
I suffered through the remainder of 2015, still losing weight from my diet, but my stomach was causing me to lose my appetite, along with my stomach shrinking from my diet. My back didn’t improve, my head didn’t improve. I had a new neurologist, who was trying things like Botox and steroid injections, as well as Trigeminal nerve blocks, but nothing helped. By November 2015, I stopped responding to virtually all pain medications, both OTC and prescription, with one exception that helped me so little, it was almost a non-issue. In January 2016, after two months of bugging her, my pain doctor put me on a new, much stronger pain medication with another strong pain medication to take for “break through” pain. The new ones had lethal side effects. I’m not joking. I had to be really careful about how and when I took them. And when I took the other one in conjunction with the first one. But they, too, didn’t really help, and their side effects seriously fucked me up in the worst way. I complained about both the low dose of the main one and the break through pain med, but my dose on the ER medication was not increased. The new IR literally almost killed me. Taking both, and a third to boot, almost killed me. Several times, I basically lost the ability to breathe and my tongue swelled up so much, it largely cut off my breathing passageways. Another time, I became paralyzed from the chest down, and Gretchen had to lie me down — I had been standing — where I lay for a couple of hours until it wore off. I thought it was going to kill me then for sure. Backing up a moment, in December 2015, I also lost the ability to eat. It’s hard to explain. I couldn’t eat, didn’t want to eat, got sick at the thought of eating. I’d go 3, 5, 7 days without eating anything, then take a couple bites of rice and a bite of chicken, and go vomit. I was nauseous when dinner was being made. My diet was thrown away; I now had some form of eating disorder, for all intents and purposes. I lost about 150 pounds…