I always think that creating a Title for my posts is the most difficult part of creating any of my posts. That is my thought each and every time I approach one of these ideas I want to write about. Should the Title come from a sentence that presents itself within the body of the particular post I am writing? Does the Title have to be unrelated to any specific sentence I write? Somehow, I figure it out. Whether my Titles are good, descriptive, silly, serious or whatever.
On to the real matter of this particular post. My health. Actually, my lack of it. Yet, again. Gigantic sigh and sense of confused frustration. There is no “Why me?” There is plenty of “Again?!?”
Just when I think I am doing relatively okay BANG it happens again. It. What is it. The why is clear. It just is. I often talk to my friends about the fact that I should have been put on an ice floe and pushed out into the frozen salt seas of the North long, long ago. I would have had we not, as a people, had and used the brains some power greater than ourselves set in motion for us to create. Medicine is an incredibly wide and varied field of helping humans to stay alive long past when many of us should have been culled from the herd by the wolves of cancer, or the lions of the desert tracking the weak from the herd and taking them out of the gene pool.
Yet, again, I am at the back of the herd. The scene in my head really is graphically vivid of how my human herd is moving from place to place being stealthily tracked by cancer wolves, heart disease lioness hunting for her pack, the yellowish white polar bear with huge paws flopping forward as her long claws grabbing crusted snow and hollow fur strands with her incredible senses of smell and of hearing the smallest sound of illness she pounces into the snow of my body, diving head first to attack and remove that creature from the deep snow with nothing more than her slavering jaws. Leaving blood and strands of muscle and sinew strewn about bright against the white pallet of crusted snow.
Weird, I suppose I live in the appropriate place for “Keeping Portland Weird.” My medical history is nothing if not filled with “weird” sets of poor health. So far, lucky for me, doctors, therapists, mental health counselors, nurses, administrative staff have managed to keep me alive.
Q: Why am I being kept alive and why do I fight so hard to be sure I am able to continue in this life?
A: Dunno exactly. But, it seems to be a requirement put upon me by society that I must seek out the diagnoses for the issues impacting my quality of life and take advantage of all medical applications to repair, correct, remove, replace those bits and shreds of my physical being to continue. Continue. Continue.
I emailed my Rabbi to tell her of my newest condition. Her response to me was sincere and supportive. She expressed that she felt like I was playing a game of “medical Whack-A-Mole.” So, true.
Getting back to “weird”. When I was thirteen years-old I was afflicted by Slipped Capital Femoral Epiphysis, bi-laterally. This was a disease that NO ONE I KNOW had ever known or heard of. Even as I grew older and lived around the USA I only came across ONE person who had this same disease. Weird, right? Yeah. Weird.
I was attacked by Strep Throat, from as early as I can recall, a couple of times a year until, I was an adult and it slowed to once a year through my twenties waning over three more decades to every other year on to almost never. Running a fever of 104 or 105 for days at a stretch was horrid! My sisters and brother lived in the swimming pool every summer right along with me throughout our young lives. I got “swimmer’s ear” a couple of times a summer. That hurt my ears so much. Finally, my pediatrician told Mom to have me put two drops of rubbing alcohol into each ear for a second or so then, tip my ear to allow it to drain out along with all the water to stop the growth of bacteria that caused sharp, constant, stabbing pin-point pain of Swimmer’s Ear. It worked. I continue do this today. I do not recall my siblings ever getting this. But, as a kid I was pretty self-involved and not more broadly aware of my siblings issues and problems. So many things.
Anal Cancer. Seriously, that was weird. It was weird timing or maybe provident that my doctor happened to notice it had been a long time since I had a colonoscopy. So, let’s get that done. Ok. FOUND – Anal Cancer. Or was it Rectal? It was right on the “Pectinate Line (also known as the Dentate or Mucocutaneous Line)” Line making it very hard for weeks to determine whether it was a “line foul” or inside the court of Anal. Weird.
A week or so ago I was diagnosed with another really weird thing. I went to the Ear, Nose, and Throat doctor because, I have been experiencing long-term hearing and pressure problems in my right ear. I figured it was just collapsed eustachian tubes. I have had this before. As an adult. Usually, it is children who need to have tubes installed into their eardrums. The eardrum eventually grows closed and squeezes the tube out in about six months. I should have gone back when the symptoms came on again. But, I did not.
So, for the past decade or more I have continued to have hearing problems. My sense of hearing has been reduced and I have am nearly always dizzy (which, I felt when my eustachian tubes had collapsed.). Over the past decade or so, it has been getting worse. The sound of my own voice resounds inside my head. There are certain tones within my own voice that causes me to become so dizzy it instantaneously makes me nauseated. Like motion sickness. I NEVER experience motion sickness. I would see my husband (now ex), my daughter especially, and sometimes my son contending with Motion Sickness. But, not me. NEVER. Which, made this reaction to the sound of my own voice so much more completely weird.
I decided I had to do something about this. I finally made the appointment to see the ENT. Prior to seeing the Doctor I was given a hearing test. You know, the test that requires you to be in a silent area or sound proofed room and they put headphones on your ears and instruct you, “Please, raise your hand every time you hear a tone. No matter how low or soft the sound.” I step into the booth and accept the headphones and agree to follow instructions. The test starts and I hear a tone and raise my hand. Another tone. Another hand raise. At one point I heard a tone that made me so dizzy I called out, “Oh MY GOD! That tone made me so dizzy and nauseated.” The audiologist asked me over the speaker, “Are you ok?” I responded, “Yes, it was just that tone that affected me. It happens a lot.” Then, I thought to myself how weird that was and said to her, “Was I not supposed to say that?” She said, “No. You were absolutely supposed to tell me that.” So, we continued the test to its end.
After the audiologist I immediately saw the Doctor. He asked me about the tone. I explained to him some of my symptoms including, the response I had to that tone and to certain other tones and even my own voice affecting me so seriously. He was very intent on the results of the audiologist’s test results. The doctor was asking me questions about the rest of my body and whether I had other dizzy “spells” or did I feel my balance was good. “No. It has not been for YEARS. I stumble, and trip, and loose my balance and fall to one side or the other.” I can drive just fine. I have become very capable of managing my dizziness while driving. When I chew the sound is intense. When I hear the sounds of emergency vehicles coming closer I have to put my hands over my ears. Because, the sound actually hurts as well, as making me dizzy. The Doctor explained that my symptoms could be indicative of either Meniere’s Disease or “something else.” He wanted me to have a CT Scan of my “Orbits”. I was familiar with Meunier’s Disease. But, nothing else that has these same symptoms.
His office arranged the CT Scan and I attended. I lay on the narrow table with my head tilted slightly back. Trying not to move. Kind of hard when you have ADD and restless body syndrome. Even swallowing was to be kept to a minimum. It took about 15 minutes and I was done. I left not yet, knowing what was or was not found.
About four or five days later weekend included, the Doctor contacted me. He received the results of the CT Scan. He said it found that I have Superior Semi-Circular Dehiscence Disease. also, know as SSCD. What the F!?!!?!!? is SSCD? He explained to me it means that there are holes in my skull. TWO HOLES IN MY HEAD!!!!!! WTF??!?????!?
He explained that the CT Scan showed that bone is missing from part of the skull and bones of the ear structure above the Superior Semi-Circular Canal. MyheartisracingandmybloodispoundinginmyearsandIamshakingandconfusedandstartingtoFREAKTHEFUCKOUT!!!!!
When he started going over my symptoms and the common symptoms of SSCD it was clear to me, as well, that this diagnosis made perfect sense. The symptoms typically are as follows:
“***vertigo and oscillopsia (the apparent motion of objects that are known to be stationary) evoked by loud noises and/or by maneuvers that change middle-ear or intracranial pressure (such as coughing, sneezing, or straining). Auditory manifestations of the syndrome include autophony (increased resonance of one’s own voice), hypersensitivity to bone-conducted sounds, and an apparent conductive hearing loss revealed on audiometry. Some patients have exclusively vestibular symptoms and signs; some have both auditory and vestibular manifestations; and still other patients have exclusively auditory complaints.***” AND
I have developed nystagmus and become quite unbalanced, confused, unable to focus, or read (for about 7 years now), loss of brain function leading to inability to find the right word or make complete and often incomprehensible sentences. Some people can hear their heartbeat loudly inside their ears, or the sound of every foot-fall. Some even hear their eyes moving! I hear my breath. Every breath. All the time. I have become use to these symptoms. It has been going on so long I have learned to ignore or accept as normal these sounds within my daily life. I have loss of hearing. And Tinnitus.
There was a time many years ago when I noticed I was losing the ability to find and speak the correct word. It was more than it being, “on the tip of my tongue.” It was running round inside my brain and no matter how fast or hard I chased it I could not catch up to it. I could see the word or phrase but, was unable to grab and hold it. Funny or let’s be honest, weirdly, I can describe the peripherals of the idea or word or phrase I want to speak. The most recent and evident episode was my inability to find the word “Sasquatch”. I was able to describe “hairy, human-like creature that lives in the woods or in the cold, but, no one has ever actually seen one.” One of my friends was able to finally give me the word I was looking for. “Sasquatch! YES, THAT’S IT!” I nearly cried.
Because, of these symptoms I went to my primary physician and told her I was afraid I was exhibiting symptoms of Alzheimer’s Disease. We talked about what I thought were my symptoms. Then, she drew a circle on a piece of white paper and a dot in the middle. No numbers or dashes showing the hours. She handed me the paper and asked me to create the hands of a clock showing the time of 10:25. I drew the short hand pointing to the hour of ten and then, I drew the long minute-hand at 25. She took back the paper and said somewhat reassuringly and emphatically to me, “You do NOT have Alzheimer’s.” I thought that was an incredibly and far too easy test to be able to diagnose that I do NOT have Alzheimer’s Disease. So, I asked her to explain it to me. She told me, “People with Alzheimer’s lose the ability to correctly place the hands of the clock. Their spatial sense of the world has changed and they simply cannot correctly draw straight lines, nor place them correctly in correlation to the circle and the dot and the loss of knowing where the numbers go.” I was so relieved I cried. I realized, as I often do, I had been holding my breath throughout this episode and only exhaled when she said, “do not have.” It was liberating and weird because, I was still at a loss to find the correct word to put into the spoken sentence or phrase when in conversation.
Why we both went no further with that I do not recall. Maybe we just attributed it to my having one femur longer than the other. Which ultimately turned out to be a proprioception problem revealing the femur’s were nearly exactly the same length. Weird. I told you I get all the weird medical problems. Since 2005 I believed I needed to have a one-inch lift installed onto the sole of every left shoe I bought. That was incredibly expensive. I left feeling much better. But, the symptoms only got worse with the addition of the rest of the vestibular problems. This was finally determined to be a proprioception problem. A WHAT!?!?!?? Never heard that word before. Actually, nearly zero of my friends had a clue. It felt quite strange to tell people what I thought I needed for a decade I only thought I needed. But, did not. Though, after a life-time of walking badly and incorrectly I developed scoliosis. Weird.
I have been completely FREAKED OUT about the concept that I will require two BRAIN SURGERIES!
I talked by phone with my oldest sister the other day. I told her about this new diagnosis of SSCD which, I had never before knew existed. She exclaimed to me, “You get THEE weirdest things. I wonder why?” Yeah. Me, too.
Just when I think one mole in the game has been smacked down another pops its head up in another place or sometimes in the same place. It is a game I cannot win. But, I keep playing.