The Emotional Release Of Knowledge

This is a much more personal blog post than I usually post on my author blog and website. This is because of the fact that many of you have sent emails, Facebook messages, and even messages to my assistant, Melissa, asking about me, wondering where I was, and after finding out about the donation page and the FB auction that was started up for me, I decided to do something that makes me uncomfortable, and that I don’t do with people I don’t know well and don’t extremely trust—I’m going to share my personal business with you all.
First of all, thank you, to all of you who donated or who bid. The nurses at James A. Haley Tampa VA Hospital and I were all extremely touched by your generosity, as were my friends and family. I couldn’t believe the number of authors and artists who donated items, the people who bid, and the people who donated money on the other donation page. Though I wasn’t made aware of anything until much later, I was actually moved to tears—and anyone who knows me can tell you that is a very big thing. I feel extremely loved, and hearing the things that so many people said, well, it was very touching. While this is morbid, it was a bit like being at my own memorial service, and being privy to what might be said by those who would be able to attend. It was nice.
And if I’d said something like that at the hospital I’d be on suicide watch for 24 hours. LOL.
Anyway, so, to stop dawdling, here’s what’s happened. Let me give you background:
Four years ago, after having been in the Army and being injured, I was living in New York, and I starting to have pressure in my head. This wasn’t like a “headache-type of pressure”, whenever I described it to doctors starting with my doctor in NY, up until my doctor in Lakeland, FL, I described it as “an alien trying to pound its way out of my head.” It didn’t feel as if there was something crushing my head, it felt as if there was something trying to blow out. It was not a very good sensation. Whenever I would have one of these episodes, I would feel out of sorts after. I would have difficulty understanding people when they talked to me, or responding back, and soon after, I started to have vision problems. It started with my right eye and soon spread to my left. Through all of this I told my doctor in the VA Hospital in NY (Dr. S-as she will be referred to since there are forms filed which list her name regarding this matter) who blew me off. First I was told to “stand up slower” (seriously, that was her diagnosis), then I was told it was vertigo, prescribed new medicine that only made me sleepy but did not take care of the issue, and then my calls were basically ignored, until I had reached a point where the hospital had to assign me a new doctor.
I moved back to Florida soon after, my biological family had come to a “ignore it” tenuous-type of acceptance with my being a transgender gay man who wrote gay romance and wanted to help take care of me. I was back in the medical care of the doctor who had first taken care of me when I’d first been discharged from the Army, who knew that when I said my pain level was 3, for anyone else that was usually a 6 or a 7. When I went to see Dr. D (as I will refer to her) she asked me if I’d seen a neurologist, I told her I had (since I’d thought I had, or been told I had in NY), when she looked it up in the system, she told me I’d seen a neurosurgeon, not a neurologist. Having obtained the bulk of my medical knowledge from Grey’s Anatomy and Scrubs (and now shows like Chicago Med and The Late Shift) I said that they were the same thing. She assured me that they weren’t and scheduled me an appointment with a neurologist in Tampa, at James A Haley. When I got there I gave the neurologist the same list of symptoms, timeline, etc. as I’d given the doctor in NY. I was given an EEG, and afterwards the neurologist told me I had a seizure disorder that he thought may be the cause of everything. He, of course, told me not to quote him.
I was given new medication (of course) and things seemed to almost get better, though I still had these “episodes” of pressure, which were now termed “seizure episodes.” With the medication (if I took them when I was supposed to) they were mostly managed, but the pressure still occurred, the vision problems still occurred, and soon my body “turned” on me.
Some of the health issues I had weren’t in relation to the big issue, they were problems I had parallel to this, liver disease, kidney problems, neuropathy (no, I don’t have diabetes, though everyone keeps trying to tell me I “give” it to me. My dad has it, my grandmother has it, I have friends who have it, and I am extremely sympathetic to those who have it, but my doctor repeatedly assures me that I don’t have it: Vicktor, I know that it seems like you have everything under the sun, but you do not have diabetes), etc. but the doctors were focused on the big issue, especially since it had been going on for so long and I just seemed to be getting worse.
I want to stop here and point out something: I’m a fighter. I’m fiercely independent. I have been since I was a kid. I had to help my mother raise my younger siblings because my biological father was always on the ship, deployed, or off at work, then they divorced when I was 10 and I really stepped up to help her out. I didn’t have a childhood, and while there may be a sliver of me that regrets that, I wouldn’t change my actions. I did what I had to do. So, because of that, when all of this was going on, I was getting very little to no sleep, every night, learning how to be independent. Talking to people, walking hallways of unknown places late at night on my own, sitting in unknown places with my back in the corner, against the wall, because I needed some control in my life. There are a lot of things I did and still do that people don’t know about because there is a driving force inside of me that says I can’t be dependent upon anyone or ask anyone for help. And yes, I know, we all need to ask for help sometimes, but for me, this is an extremely tough thing to do.
Anyway, last year, I developed what I like to call “The Never-ending Sinus Infection” that went on for months. In April, I woke up with such an extreme pain in my left leg that it made me gasp (it felt as if someone had wrapped a rubber band around my thigh and pulled one strand as tight as they possibly could). I could barely walk on it. I started having a tingling sensation in my feet and hands, and for the first time since the pressure started in my years before, I was actually scared. I called my doctor and told her what was going on. Dr. D., knowing me, knew that if I was calling her, telling her that my pain level was at an 8 and I was scared, things were serious. She told me to go to the ER. I did, but not the VA one (which was my error). I was told that I’d just “twisted” my leg and sent home with a prescription for aspirin even though the doctor never ran any tests or touched my leg or anything.
In July, after attending Rainbow Con in Tampa (which I thoroughly enjoyed) I went to Jacksonville to spend time with my daughter until my apartment the VA was getting for me was ready. I was having dinner with my daughter, her girlfriend, their friend, and her two daughters, when I had a sharp pain in my chest. My left arm went numb and I had difficulty breathing. I gasped and told my daughter what was going on, but tried to tell my daughter I would be fine. I didn’t think it was a heart attack. It didn’t feel like what my father had described and there was the pressure thing in my head again. I thought I was just having a bad seizure episode, but when we got to the hospital, I couldn’t move my left arm and I had difficulty holding anything in my left hand. When they went to admit me into the hospital, they realized that my left leg was dragging slightly. After running tests, they came and told me that I had numerous white patches on my brain and that I’d had a stroke. I was stunned. I knew about my seizure disorder but now I was having to deal with the fact that I’d had a stroke and while they weren’t sure if the ”left side weakness” was permanent, it was something that I had to deal with in that moment.
Since the hospital I was admitted at was a civilian hospital, they wanted to transfer me to the VA hospital in Gainesville because the neurologist noticed something “odd” and he wanted me to have in-house physical therapy. They also wanted to run more tests. Knowing that the VA was only going to run the same tests over again that the civilian hospital had and not wanting to go to Gainesville to be in a hospital alone, I chose to leave AMA. I wasn’t back to full-capacity, but I had work to do, writing to complete, I wanted to be with my daughter… and I really, really hate hospitals.
When I moved into my apartment in September, I still wasn’t back to where I used to be and everyone who knew me well could tell. I slept a lot, I had trouble with speech, difficulty typing, I still had left side weakness, and all of a sudden I started having other problems as well. The pressure in my head started to come on all of the time, my service dog I had at the time (Isadora-I don’t have her anymore, I had to rehome her when I got sicker and she needed to go out, be fed, etc.) who was very sensitive to me, spent most of her time, curled up somewhere near me whining, trying to get me to take my meds, eat, reminding me to shower (oh yeah, me, the guy with OCD forgot to shower-OFTEN) and standing outside of the shower just in case I fell or got weak, pressing her body against the curtain so I could lean against her body. I was consistently going to the bathroom, having stomach pains, pain in my left leg, left arm, weakness in both of them, and having memory issues.
It all came to a head in December when I had a seizure and fell in my apartment alone. Isadora barked like crazy until one of my neighbors came by to find out what was going on. The apartment complex I live in is very close and my neighbors check in on me all the time, when the found me, they called 911 and I was rushed to the hospital, things went from bad to worse over the next five-six months.
I had seizures, mini-strokes, they ran tests, I had anxiety attacks, one of my kidneys had liver damage, I have liver disease, my heart was having issues, I was still having tingling in my feet and hands, ringing in my ears, nausea and vomiting that I’d been suffering from off and on for years as well as the acid reflux that I’d been treating by drinking ginger ale and Sprite; and through it all the doctors kept trying to figure out why I was suffering from these issues as well as why I had the pressure in my head, and what the mass on my frontal lobe and the “cluster of cells” at the top of my brain meant. I had numerous MRIs, MRAs, EEGs, EKGs, Echocardiagrams, and other tests done and while they did discover some things and started me on new medications, but still the pressure persisted.
Finally, I was given a spinal tap. The first time they attempted it, they weren’t able to do it because of the pain and my scoliosis. Finally, they had to take me down to the IR department rather than doing it in my room, and giving me a monitored dose of morphine (I spent time being sedated and given monitored doses of narcotics because of my wish to not have anything too strong that I can just give to myself) so they can do the test. Before they gave me the test, I talked to the guy doing the check in and he asked me about why I was there and I told him about how everything had started and for the first time since the medical issues had started, I didn’t describe the pressure in my head as “an alien trying to punch its way out of my skull” I said that it felt like “a pulsing pressure around or in my brain.” He asked me if anyone had talked to me about the possibility of me having: pseudotumor cerebri. I asked him what it was (ummm… hello? Neither Grey’s Anatomy, nor Scrubs, nor Chicago Med, or The Late Shift have ever covered a diagnosis like this before. I would know.), and he told me that it was “a brain tumor that’s not a brain tumor.”
Yeah. Right. Thanks.
So the spinal tap was run, and to make a long story even longer (hahaha) the head neurologist, Dr. G., whose like the best neurologist in VA Hospital or the area or something, came in with the resident who had been assigned to me, to let me know that yes, I had pseudotumor cerebri, and that if it hadn’t been for the IR tech nurse, then it was possible that they might not have been looking as closely for that.
I cried.
Like a bitch.
I sobbed.
Hard.
Not because I had something that is defined as: “False brain tumor”: Symptoms mimic a brain tumor, but no tumor is present (Because this condition causes symptoms of elevated pressure in the head – which is also seen with large brain tumors – but have normal scans, the condition has been called pseudotumor cerebri, meaning “false brain tumor”). But because finally, finally, FINALLY they knew what the fuck was wrong with me.

 

 

When Dr. G. started to recite the symptoms, I started laughing:
·         Moderate to severe headaches that may originate behind your eyes and worsen with eye movement
·         Elevated pressure in the head
·         Ringing in the ears that pulses in time with your heartbeat (pulsatile tinnitus)
·         Nausea, vomiting or dizziness
·         Blurred or dimmed vision which can increase over time
·         Brief episodes of blindness, lasting only a few seconds and affecting one or both eyes (visual obscurations)
·         Difficulty seeing to the side
·         Double vision (diplopia)
·         Seeing light flashes (photopsia)
·         Neck, shoulder or back pain
·         Prompt diagnosis and treatment of pseudotumor cerebri is important since it may lead to progressive (and possibly permanent) loss of vision.
·         Neck stiffness
·         Forgetfulness and/or depression
·         Often, pseudotumor cerebri headaches often occur at the back of the head and start as a dull pain, which tends to be worse at night or first thing in the morning.
·         Vision problems in pseudotumor cerebri evolve slowly over time, with temporary episodes of visual blurring that can start in the peripheral field of vision. If the pressure continues to build up, the nerves affecting eye movement can also be affected causing double vision.
·         The individual may not even notice until later in the clinical course of the disorder when the central field of vision is involved and the symptoms become constant. At this point there is a growing risk of blindness.
·         It is increasingly recognized that PTC can also affect memory and cognition.
All of the things he’d described, all of the things above I have gone to the VA hospital for. I’d been treated for, and each time I was told it was something else, something different, something related to something else. To know they were all connected gave me an extreme feeling of relief. So I had an emotional reaction… and I don’t cry.
I asked Dr. G. what was our next step. He told me that usually people were diagnosed and treated early enough that the medicine: acetazolamide can actually help to either hold off or reverse many of the symptoms above, however, with me, I’ve been suffering from this for over four years now and they just “aren’t sure” if the medicine was going to help me, but they wanted to try before they had to take more drastic measures (ie, surgical placement of shunt, or special tube, to redirect fluid from the brain and ease pressure, surgery to decompress increased CSF around the optic nerve, and/or placement of a stent in the draining venous sinuses if narrowed, to improve CSF absorption and reduce intracranial pressure.)
So I was sent home, with a skilled nurse (don’t ask me if she’s a LPN, or RN, or CN or whatever, because I don’t know, and I had one really rude nurse at the VA hospital who practically sneered at me when I called her a nurse and she told me that she was a RN: ex-squeeze the fuck out me, I love nurses don’t get me wrong, but your rudeness is uncalled for), a home-health aide, and a physical therapist, as well as a supervisory nurse to make sure everything runs well. The skilled nurse makes sure I take my meds twice a day (because if they aren’t put in my hand, and I’m constantly reminded to take them, I will forget to take them), the home-health aide comes to help out with the cooking, cleaning, laundry, to help remind me to eat, shower, to make sure I’m up and walking around, and then there’s my physical therapist, whom I call the sadist. He, of course, is the one who is trying to help me get full functionality back in my left side. However, since my first major stroke last year,

I’ve had two confirmed mini-strokes, and each time one of the nurses come they essentially are watching for the possibility of another stroke, a seizure, or the worsening of any of the PCT symptoms. So I receive vitals constantly, phone calls persistently from them, and every cough, sneeze, or twitch is catalogued. And for someone like me who hates asking for help, or telling people what’s going on with me, or can hardly remember it all, it sort of makes me feel violated.

At the same time, I’m grateful for them. Because I have way too much more to do. And these people, these nurses, physical therapists, aides, etc. are helping me to be able to get them done. They are keeping me around for my daughter, for my family, my friends, and for that I’m grateful.
And for those of you who talked to my friends Ryan and Angel, or who called to reassure, encourage, or offer comfort to my daughter, while I was sick, thank you. To the few staff members of Dreamspinner Press who knew what was going on and who wrote to me and kept me entertained, encouraged, or who gave me something to do when I felt like I was going to go crazy, who let me vent, who supported me and didn’t let me get down on myself when I said I was only writing about 150 words a day, thank you so much.
And again thank you to all of you for your support, your donations, your words of encouragement, support, and everything else. You have no idea what it means to me.
So, for those of you who have asked me when the next book for whatever series is coming, or when a book is going to be coming out on audio, or what I’m working on… well, I have one book that I’ve been working on for six months and I have two chapters left. That should let you know how hard things are for me as far as writing right now. But I’m still trying, it’s just taking me some time. The ideas are there, the storylines are there, but getting the connection from my brain to my fingers is taking a lot longer. This blog post, which is coming to an end, took me a week to write, and there might be some things which repeat, I don’t know.
Anyway, I wanted to let you all know what was going on, since you were all nice enough to donate and bid to help me, though I had no idea it was going on (-glares at Pat-) I figured I would share it with you. Thank you for your concern. I’m not back completely, and it will still take me a while to be 100% but I’m just happy to be out of the hospital and to know what’s going on with me.
And thank you to the authors whose books I was able to read (before my iPad died in a horrible toilet related incident), your words made my stay bearable: Amy Lane, Anya Byrne, Aiden Bates, Wolf Specter, Willa Okati, Haylee Wolf, Stormy Glenn, TJ Klune, Andrew Grey, Abigail Roux, Piper Vaughn & Kenzie Cade, Heidi Cullinan, Kellan Larkin, Elaine White, Grace R. Duncan, Hannah Walker, Roan Parrish, Marcy Jacks, Maggie Walsh, Cree Summer, Renae Kaye, Shannon West, Rebecca James, Jess Buffett, Giovanna Reaves, Terry Poole, T.C. Orton, Shae Connor, Jaime Samms (I read new stuff, but The Foster Family is my go-to comfort read of yours), Mary Calmes (I read your newest release but you know which books of yours are my favorites. I returned to Jin and Logan, and Rand and Stef), Tatum Throne, Antonia Aquilante, Lynn Stark, Erin M. Leaf, Morticia Knight, TJ Cross, A.E. Via, Tara Lain, Melanie Hansen, and Felice Stevens. As soon as I get another iPad I’ll be able to continue reading and enjoying your books and the works of others during those times when all I can do is lay in bed.
I hope you all have a wonderful week, and again, thank you so much.
Keep Reading, Keep Loving, & Never Stop Fighting For A Better World,
-Vicktor Alexander
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6 thoughts on “The Emotional Release Of Knowledge”

  1. Thank you for your sharing. I had no idea. No clue. But I did think of you and wonder. Sent good thoughts and positive energy just in case. *hugs* So glad you are on the road to recovery. Will continue with the good thoughts and positive energy.

  2. Thank you for Letting us know. I have been praying for you and will continue to do so. I hope you will get better soon. and I am glade they finally figured out what is wrong with you. Thank you for not giving up.

  3. I hope you feel better soon!! I know how it feels to be misdiagnosed and the relief of just knowing what’s wrong even if it’s scary. Thanks for sharing that alone is scary too. Sending good vibes and prayers your way!!

  4. The beauty of your soul as always shines so so bright. Your sharing continues to inspire in so many ways. I’m so very happy that you are such a fighter and that your light continues to show the way. Missed you, love Sam.

  5. I’m glad you are on the road to recovery. May you get back to 100% health as quickly as possible, thoughts and prayers sent your way. Thank you for all the entertainment and joy your books have provided me this last couple of years. Hope to see your new books soon…

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