hankrules2011

A polymath rambling about virtually anything

Posts Tagged ‘life’

An Overdue Overall Update

Posted by Scott Holstad on December 31, 2017

12/31/17

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!

— Scott

 

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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…

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A Shocking Discovery

Posted by Scott Holstad on August 16, 2016

I had an appointment with my neurologist yesterday and in discussing some problems I had last Thursday, among several topics, I was shocked by what he told me. He said that I had had a minor stroke! I was stunned. I didn’t believe him. He said he was 100% certain I had had a stroke. I won’t bore you with what symptoms I had exhibited that led him to believe that, but as I wouldn’t believe him at all, he then conducted a battery of neurological tests on me, right side versus left side. This had impacted my right side. To my complete shock, the entire right side of my body is noticeably weaker, slower, less responsive, etc., than my left side. That was pretty convincing. I had had no idea before then. He told me I’m the ideal candidate due to my age, gender, and the fact that I’ve been experiencing some things that my doctor asserts would be typical of one experiencing that kind of trauma in that region, including years of severe pain in my eye sockets for numerous hours per day, every day. He sent me for an immediate MRI to make sure it’s not worse than what he thinks it is and he sent a request to my cardiologist for her to run some tests too. I called Gretchen in the taxi ride home and told her and she was shocked. I think she was a little distressed as well. She needed some time to process and I had to get to the imaging center, so we said goodbye and I spent my afternoon getting blasted in a loud machine. My third MRI of the year. So, after reading about this, I’ve discovered that 1 out of 20 people who have one of these have a major stroke within a few days and that 1 in 10 within three months. I kind of feel like I’m living on borrowed time. This is a bit of a shock. Gretchen seemed really surprised by my revelations about my weaker right side, so she asked me to do the basic first test of using both hands to shake her hand, something I did with my doctor. It appeared that my left hand’s grip nearly broke her hand. She winced and asked me to let go quickly. It was a tight grip, as my grips always have been. Then, I used my right hand. She was shocked! She asked me to squeeze harder and I told her this was the best I could do. I was basically making contact, I think, and I don’t think I was able to apply much pressure. It was embarrassing to me, but I think it showed her how weak my right side is. She didn’t conduct anymore physical tests. She was either convinced or too depressed to do so.  Anyway, I also had a tempestuous phone conversation with my mother last night, which make my day even better. All I can say is thank God for Gretchen, who while upset, is still a kind, loving, supportive person, there for me, and we can both lean on each other. Thanks for letting me share this, friends.

 

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My Fifth WordPress Anniversary

Posted by Scott Holstad on June 26, 2016

WordPress was kind enough to notify me a few days ago, on the 20th, that it was my my fifth anniversary with them, blogging away the whole time. It’s hard to believe. I had come over from Xanga, a blogging site I had been on since 2004 and one I loved desperately. It’s just that friends were leaving that site in droves — I didn’t know why, no one told me — and I felt like the site was going to hell, so while I didn’t delete my Xanga account, I started searching for a new blogging home. I had friends on this place, Blogger, and TypePad, but it was WordPress that really stood out for me, and besides, this online literary journal I had recently become poetry editor for had an account here, so I decided to open my new site here. I did and never looked back. My first posts were unusual and designed to introduce myself to new people, let people get to know me. I didn’t start writing book reviews until about three years ago or so. I wrote about writing, creative writing, sports, health, politics, publishing, published some memes, some lists of favorite books, songs, bands, etc., had quite a few posts which weren’t easy to categorize, etc. But then I started to find my niche with my book reviews, which, much to my surprise, became my blog posts with the most hits by far, as well as the most likes, and even the most comments, when I got any, which is rare. Since then, most of my posts have been book reviews — I published hundreds — interspersed with some sports posts, the occasional political or spiritual/religious post, an occasional creative writing post, some health posts, and a few others that are hard to categorize. But it’s the book reviews that people read. I’ve tried to figure that out but I guess it’s as simple as that’s what people want to read. That simple, right?

Well, anyway, in honor of my fifth anniversary on WordPress, I’m going to provide a link to my blog post from five years ago today: 20 Questions. I hope some of you find it interesting and enlightening. Actually, now that I think of it, I’m just going to post the whole blog post here. It’s short and probably easier than having to click on the link and go to another page. Remember, this is from June 26, 2011. Here it is:

 

20 Questions

Delete my answers and substitute your own. Enjoy!

I’ve come to realize that… I have taken far too many things for granted in my life, even when I thought I was not doing that. It’s a tragedy & I’m trying to remedy that.
Reconciliation is… ideal, but not always realistic. This is exactly the opposite of how I have felt my entire life, but I have wasted way too much time over the years trying to reconcile (or even simply remain on the same friendly terms…) with various people for various reasons and I can count on one hand quite easily the number of times it was worth the effort. Move on.
I talk… more than ever, if you can believe that. I have a lot to say. I spent the last 7+ years living with someone who really didn’t like to hear me talk much, but who preferred watching TV. Like 24/7. For years. Yeah, good times. I’ve got a lot to say and a lot stored up, so sorry….
I love… one special individual more than anyone I ever have at any time in my life, to a shockingly higher degree than I ever knew was even possible. Yeah, I admit it. I also dearly love my parents, my kitties, and several of my good friends who have stood by me over the years. My list of friends I “love” has diminished greatly over the past two years. Pity.
My best friend/s… are fewer than I thought in number, but are critically important to me and people I feel confident I’ll remain loyal to forever and who will be there for me forever. I’m blessed in this regard.
Love… is a newly important word to me, as most of my life it was largely an abstract concept, outside of my loving family. In my middle years, I have been blessed to discover what I now believe “love” is and is meant to be, and I had no freakin’ idea this was a possibility.
Marriage is… hit and miss. Usually a mistake. Usually entered into too soon and without sufficient forethought. A business partnership. Yeah, I’m jaded.
Somewhere, someone is thinking… “I wonder what that whining, bitchy drama queen Scott is going on about now.” Seriously. You think I’m joking….
I’ll always… remember times, places and the special people who have gone out of their way to save my ass in the biggest and worst of situations. Foremost among these are my parents and my best friend, Marcy. Emily, Jim & Eunice, Arnold & Sarah, and Ami have been there for me too. Many thanks.
I truly relax… nowhere. I stopped being able to relax years ago and now I no longer know how to, which is pathetic, and I even feel tremendous guilt if I even make an attempt to relax! Therapy is clearly in order.
My cell phone… is my life. I store everything in my iPhone. I’m not kidding. If that ever disappears, I’m more screwed than if my wallet disappears.
When I wake up in the morning… I now thank God for allowing me to see the sun rise once more, to be able to draw a breath, to have friends and family (and kitties) who love me. I no longer take these things for granted.
Before I go to bed… I talk to my special loved one for as long as possible in order to end each day on a positive, loving and blessed note.
Right now I am thinking… that I have a lot more to be grateful for than I – or most other people – would typically realize, looking at circumstances.
Babies… make me break out in hives. I’m horribly allergic to them. Always have been, always will be. I find them quite distressing.
I am committed to… doing everything possible to survive. And to love and live more strongly and sincerely than I ever have in my life before now.
I miss… my cat Rocky, who died in August 2007. I also miss seeing and hanging with my best friends back out west, including Marcy, Celeste, Marc, Emily and Rachel.
Tomorrow… is a hope and a goal, but not a guarantee.
I really want to be… healthy enough to live long enough to have a quasi-“normal” life and a happy one, to whatever degree that is possible.
I hate… people who don’t understand and who don’t even try to make a serious damn effort to understand.

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Correlation?

Posted by Scott Holstad on November 4, 2015

So if you’ve been reading me for any time at all, you’re familiar with the fact that I have and battle severe head pain. I have trigeminal neuralgia and have somehow also been diagnosed with cluster headache, both of which are supposed to be among the most painful conditions there are in the world. My pain this year, made worse by my daily, horrible back pain, has been hellish and debilitating. But my wife and I have started to suspect a possible pattern with my head pain and we’re interested in trying to prove this theory. I have really bad insomnia and average about three or so hours of sleep per night. I try to go to bed between 10 and 10:30 at night and often am up between midnight and 2 am, even as early as 11:30 PM the other night. I can’t go back to sleep when this happens, typically, although my sleep doctor has given me a second sleeping pill to take when I wake up so that I can try to get more sleep. Sometimes I take it and it can work. Sometimes it doesn’t. Sometimes I forget to take it. And sometimes I don’t want to take it, cause I actually like getting up fairly early. Anyway, two of the past three nights I’ve somehow slept in. One night I slept in until the horribly late time of 6:15 and the other I slept in until 4:15. It was horrifying. What was more horrifying was that my head pain was much worse than usual on both days following those nights. I had 10 out of 10 days. The pain was nonstop, all day hell with virtually no relief. Eventually, quite a few prescription pain meds helped decrease the pain by the very end of the day just a little bit, but it was way too little way too late. And the interesting thing was that on the usual days that I get up between midnight and 2, my pain level is usually more between 7 and 8, sometimes as low as 6 out of 10. Usually 7. And this isn’t the first time we’ve noticed this. I rarely get to sleep in, so we haven’t gotten to observe this often, but the few times it’s happened, we seem to recollect that my really bad headaches seem to occur on days I get the most sleep — seven or eight hours. When I get, two, three, four, the pain is somewhat significantly less. Why is that? I have no idea. There has to be a correlation, though, don’t you think? It can’t be pure coincidence. When I go to Vandy’s headache clinic next week, I want to bring this up and let them ponder this. See what they ultimately have to say about it. I do know poor sleep can affect head pain. But to this degree? By the way, I’ve told my pain management specialist I’m going to Vandy and she’s excited and hopeful for me, but I haven’t told my neurologist because he’s a massive narcissist who would probably be massively insulted and might make things hard for me. I’m not quite sure what to do about that. I don’t want to drop him yet because Vandy might not be able to help me and/or driving six hours a day to go there and back regularly might turn out to be a giant pain in the ass if they’re not seriously helping me long term. Oh, and Gretchen is taking that day off to go to Nashville with me, which is awesome. It’ll be great to have her support and also her word to confirm my assertions, as well as to drive us home as truthfully, I don’t know if I’d be able to do so based on my recent head pain patterns.

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Rheumatologist Appointment

Posted by Scott Holstad on November 1, 2015

This week, I had an appointment with a rheumatologist. I had been waiting nearly SEVEN months for this appointment! I was not happy about having to wait so long. However, I was increasingly desperate and was hopeful this doctor could help me.

I’ve always had strong hands and have always been able to give long, strong massages my whole life. That stopped several years ago. I developed pain in my hands, particularly around my thumbs, that made it impossible for me to go on longer than just a few minutes. Furthermore, over the past two years, my hand/finger pain has gotten a lot worse. I can’t grip things. I can’t mow anymore. For one thing, I can’t grip the mower handle. For another, my orthopedist tells me I have arthritis in my hips and it hurts horribly to move more than 10 steps. So the past two years, I’ve hired a lawn care service to take care of our yard and our lawn mower has gone unattended. I feel guilty for this, but literally, the last many several times I attempted to mow our small yard, I had to stop many times to give my hands and hips a rest and it took quite awhile to get it done, and with quite some pain. I also have a hard time vacuuming. Not only does it hurt to grip the handle, but now it hurts my back too. Apparently, that’s because, as my orthopedist told me, I have arthritis is my spine too. I’m in physical therapy for it, but it’s not doing much good. My back hurts like crazy all the time. Additionally, I’m old fashioned. I like to write checks. I like a paper trail. So I pay a lot of bills the old fashioned way. I sit down to write seven or eight or nine checks for bills and after the first one or two, I have to stop for five minutes or so, because my hands and fingers hurt so much. And then after I write another check, I have to stop again, and so on. The point is, it’s pretty debilitating. So I wanted to go to a rheumatologist. A long time ago. And this is the earliest they could fit me in. I sure hoped they would be good.

My appointment was for 8 AM, but since they never mailed me my new patient paperwork to fill out, I had to show up early do fill it out there, so I got there at 7:15. My new doctor was named Dr. Braggs. I really didn’t know much about her. I was hoping she would be good. I haven’t always had the best luck with specialists here in Chattanooga. After I got the paperwork pretty much filled out, they called me back and put me in a room. They took down all my medications, which took a long time since I’m on so many, but eventually I was ready and then, to my surprise, I didn’t have to wait too long. Dr. Braggs came in my room quite soon and it was apparent she wasn’t a southerner just based on her accent alone. Also, she didn’t engage in idle chit chat, like all southerners do — which drives me nuts sometimes — and was very professional and businesslike. I appreciated that. And she was thorough! She asked me a number of questions, tons of them. All types of questions. She went over all my meds. She talked me to about pain meds and about my misuse of over the counter pain meds, including even Tylenol. She told me what I could and couldn’t take, how much, and why. She conducted a very comprehensive physical exam, including even taking my shoes and socks off and examining my feet, toes, and ankles. We were in the professional building of a huge hospital in town and she was able to call up all of the images the hospital system had of me dating back all the years I’ve been here. She looked them over and while admittedly, many of them weren’t recent, she was able to determine a number of things. She showed me what she was talking about on her computer while she talked about them, which was very helpful. Apparently, then, I have massive osteoarthritis spread throughout my entire body, mainly in my hands, entire spine, and hips. I knew the thoracic area of my spine had it, but I didn’t know my entire spine did. She also told me it’s likely I’ll need a couple of hip replacement surgeries in the not too distant future, which was quite depressing, although she encouraged me to do everything possible to hold that off for as long as possible. She sent me to have blood work done to see if I have gout or Lupus or anything like that and she sent me over to the hospital to have my hands x-rayed, since she actually didn’t have hand x-rays. She was pretty sure my hands were bad though, especially — and much to my surprise — virtually every knuckle she touched on both hands were very sensitive to her handling of them. It really was pretty uncomfortable.

Between the doctor’s office, the lab, and the radiology department, I was there for over three hours. She wrote me a prescription for a medication which hopefully will help with my back/joint pain, or something like it, and then told me to get three supplements I should start taking right away. She also told me I couldn’t take any more NSAIDs like Advil or Anaprox and had to limit my Tylenol intake to a maximum of six per day, but that for every Percocet I take for head and/or back pain, I had to subtract a Tylenol, so it’s tricky. She wants me to start swimming, although when I told her I can’t swim, she then said water aerobics. I’m to see her again in four months. That was Wednesday, I guess. On Friday, someone from her office called to let me know my blood work lab results came back showing I don’t have gout and most things looked fairly good and that my hand x-rays showed quite a bit of osteoarthritis, which didn’t really surprise me. So, I felt really good about her. I thought she was very competent and knowledgeable. I thought she was professional and appreciated the hours she spent with me. Even though the idea of a couple of hip replacements is depressing and scary, I was glad to come out of there with more knowledge and a better idea of what’s going on with me and what, if anything, can be done about it. And apparently, not too much can be done about osteoarthritis. It’s not curable, I learned. It’s somewhat manageable, and perhaps many of you already know that. I truthfully didn’t know much about this. In fact, until a couple of years ago, I thought arthritis was just an annoying little pain old people got in the fingers. Boy, was that stupid! Although the doctor did say I was awfully young to have so much osteoarthritis. Anyway, that’s my update. Glad I did it. This month, I have a lot of doctor’s appointments. The one I’m most excited about — and nervous about too — is at Vanderbuilt’s Neurology Headache Clinic in Nashville in a less than a couple of weeks. So far, my pain management specialist, neurologist, and neurosurgeon, among other doctors, have been unable to help me with my extreme head pain over the past year, so I’m going out of town to find help. I’m hoping a major research institution can do just that. I’m scared they won’t be able to identify the problem and fix it, though, and that’s a depressing thought. Still, I’ll cross that bridge when I come to it. I hope everyone had a happy Halloween. Cheers!

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Pain Issues Update

Posted by Scott Holstad on October 9, 2015

As I’ve written about before, I have to deal with extreme pain and have had to since about 2010. However, it’s gotten worse since around April 2014 and, if possible, even worse than that since about six months ago. I have Trigeminial Neuralgia, which is one of the most painful disorders known to mankind. Wikipedia calls it the Suicide Disease. It affects the trigeminal nerve in the brain, which impacts your entire head and face, providing blasts of indescribable pain which are completely debilitating. And I happen to have Type 2, which is a slower acting, long lasting type of TN, with a less sharp, but still extremely violent type of pain that impacts my entire head and face, usually on my left side. It makes it impossible to do very much at all. For several years, I was completely bedridden with it. I have had to have a number of minor surgical procedures for it, some of which have worked short term, many of which have not. I’ve taken a zillion meds for it, but the only one that’s ever helped has been Percocet, which I’m not fond of taking. Unfortunately, I have to.

At the same time, I’ve had back problems. I was diagnosed a year or two ago with coccydynia, which is extreme tailbone pain. I was diagnosed with degenerative disc disease in my lower back and some other lumbar problems. I also have arthritis in my hips and it hurts to walk any distance at all, and it certainly has hurt to sit for any duration many, many times. I have one of those “donut” pillows to sit on, which helps somewhat.

Because of these problems, I am on disability.

The problem is that in the spring of 2014, I started getting a different type of head pain and couldn’t figure out what was happening to me. It actually seemed to be an extreme type of “normal” bilateral headache and it’s stumped my doctors. In addition to my primary care physician, I have a pain management specialist, a neurologist, and a neurosurgeon. None of them seem to hear what I’m saying when I describe this new head pain to them. I guess cause it doesn’t make sense to them. It can’t be bilateral and cause that much pain, so they ignore me. My neurologist, at least, has been trying out a ton of different meds on me. The problem is most don’t work and most are so new and expensive that Medicare won’t pay for them. Great. Five weeks ago, he gave me Botox injections for the first time. I’ve always heard they can help with head pain. He told me it takes one to three weeks to kick in, but should work for two to four months. It took about two or three weeks before I noticed a difference, and my head pain did improve from about an 8 or 9 out of 10 to about a 5 or 6, which was big, but this past Saturday, the pain returned with a damn vengeance, and until yesterday, I’ve been at a 10 out of 10 every day since. It’s been brutal. And the new meds he’s given me to take haven’t done anything.

Meanwhile, about six months ago, my back started hurting really badly, every day. Like 9 or 10 out of 10 every day. Excruciating pain. Combined with my head pain, it made life virtually unlivable. I scheduled a massage or two, thinking it might be muscular, and that worked for a day or two, but I was also concerned it might be skeletal, so finally, after waiting way too long, several weeks ago, I went to see my orthopedist. They took a ton of x-rays and then had some surprising news for me. First of all, my coccydynia is worse than I realized. My tailbone is broken. Completely. My doctor recommended I have surgery to have it removed. I had already talked about that with her a year ago and since have talked about it with several other doctors of mine, all of whom advised me against it as they’ve had patients who have done that only  to wind up with permanent, horrible pain as a result of the surgery. They said it would be stupid, just live with it. I told her that and she said their surgeon is an expert and has written books on the subject and that people come from as far away as Minnesota to get him to do their surgery. *sigh* I don’t know what to do. For the moment, I don’t think I’ll have it done. Secondly, I still have arthritis in my hips, which of course I knew. Third, my degenerative disc disease in my lower back has worsened, if that’s possible. Fourth, I have arthritis in my middle back’s spine. Fifth, I have degenerative disc disease in my middle back, where my main pain is located. Sixth, and most important, she used a medical term for this that I don’t remember, but in my own words, I have the worst curvature of the spine I’ve ever seen just by looking at the x-rays. Unreal x-rays. And I’m only in my late 40s. Damn! How did that happen??? I’ve never seen an x-ray that looked that bad before, with the possible exception of my broken tailbone. She said my middle back muscles are straining to compensate for that spinal problem and are too weak to cope, so she sent me to physical therapy for eight weeks and will see me again when I’m done. Hopefully I can avoid surgery. I know sometimes I’ve slouched over the years, but I actually do try to sit straight and stand straight most of the time, so I have no clue how this happened. And all of this has been contributing to my 10 out of 10 daily pain I’ve been experiencing for months. Unreal.

Back to my head pain. I’ve come to the conclusion that no doctor in Chattanooga can help me. I need to go to a big time place. So I contacted Vanderbilt University’s Neurology Headache Clinic and talked to them for awhile. They require a referral, so a month ago, I asked my doctor to fax one to them and he did. They told me it would take two to three weeks for them to contact me. Well, it’s been a month, so yesterday I called them and they claimed not to have received the referral. Great. I’ve been suffering like crazy while waiting for nothing. I called my doctor’s office again and explained the problem and the person I talked to had an attitude. Said they’d faxed it. I said maybe they sent it to the wrong fax number, would they please re-fax it to THIS fax number. They grudgingly said they would. I waited a few hours and called Vandy back to see if they got the referral. The woman I spoke to asked which fax machine did they send it to. Man, how many fax machines do they have? They must be a huge place for a “clinic,” because they have 80 neurologists on staff. Anyway, she said she’d have to send a message to their “faxist” to research the matter and someone would get back to me. That was at 1 PM. No one ever called me back. Why are healthcare professionals such dumbshits? Why are they so damn rude? Man, it’s like pulling teeth with them and they treat you like they’re doing you the greatest favor in the world when in point of fact they’re actually just DOING THEIR DAMN JOB! Anyway, the woman I talked to also said something about all of my files being faxed to them, which surprised me because no one had ever mentioned that to me before. All I’d been told was the referral. If they want medical files, I’d have to contact a number of doctors and it would take awhile and probably tick some people off. Of course, I could do it, but why do it unless I knew they’d agree to see me? Maybe they wouldn’t agree to see me without seeing my medical files…. What a damn hassle. Just the fact that I’m willing to drive three hours away one way to get help should indicate how desperate I am. I would really like to think that they could help me. When I talked in depth with one of their nurses last month, she told me I seemed like a hard case and would need to be seen by one of their department heads. I’d really like this to work out, cause I need help. I am, however, nervous about my current neurologist finding out. He started the first headache clinic in Chattanooga, has been very successful, is a huge narcissist, and I think would be very offended if he knew I were taking this step. He might even drop me as a patient. I don’t really know. And he is trying to help me. It just hasn’t been that helpful so far. However, I see him next week, so I’ll tell him about the results of the Botox injections and see what he does next. Who knows? Maybe he’ll come up with something. I doubt it, but maybe….

Anyway, since this pain has been ongoing since 2010 and since it’s gotten worse a year and a half ago and since it’s gotten much worse a good six months or more ago, I’ve become increasingly depressed. It’s difficult to make plans to do anything when you’re always in major pain. It’s difficult to actually do anything period. It gets old lying around the house feeling sorry for myself. I do get out in the mornings, usually, to run errands, since my pain seems to be less severe in the mornings, but it worsens throughout the day and there’s nothing I can do about it. Lately, it has come to feel like I’m in a hopeless situation, like I’m trapped in a prison with no way out. It feels like no one can help me, like I’m totally screwed. If this is what I have to look forward to for either the indefinite future or the rest of my life, well, where’s the quality of life in that? It just gets increasingly hard to remain upbeat or positive and I feel like I’m dumping on my wife all the time and that makes me feel badly, because she deserves a more positive husband as she has her own issues to deal with. Well, I guess that’s it for now. I have an appointment with my neurologist next week, as I wrote, and another with my pain management specialist in a few weeks. I’m going to try and follow up with Vandy. Maybe something will come of it, although I frankly don’t have high hopes. Feel free to send good vibes, if so inclined. This is a deep pit I’m trying to climb out of.

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