Nowhere on this site, as of yet, is there a clear description as to what exactly the problem is, nor what “RebuildMe” would entail. Part of this is a concern with over- or understating the problem in terms of scope and complexity. Another part is the fact that as of yet, the project is not complete, and I see several glaring holes remaining in my work. Yet another is likely due to some deeper-lying concerns over presenting my work and my situation in a public manner, exposing it to criticism and feedback. Self limitation in the pursuit of some likely unobtainable perfection.
I do, however, think providing some concrete description of the problem, as I understand it presently, would be beneficial both for a prospective reader and for myself. In an attempt to do just that, as well as set a precedent for a series of status reports going forward, I am going to be providing a primer of sorts for my project here. This is meant to be a relatively quick summary; I will introduce the main moving parts, as well as associated ideas, without spending too much time digging into the details contained within them. That will be reserved for future posts and the main body of the work, where they all will be explored in excruciating detail.
This will be the general format for the future status reports I intend to make as well. These are proofs of progress, both to external eyes and my own. They serve to document, in a way, the steps I have gone through (starting from here, which granted is quite a few steps deep) since the prior status report. They are not intended to be the substantial body of work; they serve to demark the steps in the creation of that more substantial work. Part motivation, part documentation, part consolidation.
With that being said, this is not in any way meant to be a finalized version of the wok. This is me, at this present moment, with the internal and external constraints I am under, attempting to briefly consolidate and summarize the status of the project. I may forget things which are mentioned in future posts, I may convey something poorly, ideas written here may change. This is intended to be a static status report of what will be a living work. This, too, is the framing under which I want all status reports to be considered.
As this is the first of such reports, it is going to represent a longer period of progress than future reports will. This may result in it being longer, or it may result in it being overly summarized in comparison to other status reports. Time will tell.
With that framing laid out, let’s begin our cursory analysis of the Gordian Flesh Knot I have found myself occupying, and my general plan for cutting and unraveling it.
When writing these posts, this status report, and the more substantial writing I have done in the past (which will require heavy revision), I struggle at times to find the correct voice and wording appropriate to use. The goal of this work is for it to be read and understood. In my mind, the best way for it to find its target audience is for it to be easily digestible by a large number of people.
However, I do not believe writing to the lowest common denominator is beneficial. The problem is undeniably complex; there are a massive number of moving parts, and I will have to reference a large dictionary of terms from a number of related fields to properly and completely describe the problem and my proposed solutions. This however, does not mean that I need to make the work itself difficult to parse. Ideally, I want whoever finds themselves interested in this work capable of understanding it, either through the main text or through the accessory texts.
I find a tendency in academic works for the authors to use very dense terminology and liberally apply field-specific jargon, in ways that can make the writing overly obtuse. I’m sure there’s many reasons for this any specific author may bring up in their defense. Some may be legitimate; once familiar with a field, it may truly be that the only way to succinctly convey a point is to use
It all started when I was born.
No, really. I believe the deformity at the center of this condition is congenital. I have no obvious injury in my recollection or records that would result in it’s formation, nor is there really any reason to believe otherwise based upon the imaging I have available to me. Additionally, I did initially take notice of the abnormality of my chest wall at a fairly young age. I am very confident that if it was not present at birth, any injury precipitating the advancement of my condition was incurred very early in life. Accordingly, the symptoms I would associate as potentially being related to this central pathology began at a fairly young age, and fully conveying that story is outside of the scope of this relatively “brief” article. So, in the spirit of this progress report being succinct and digestible, I’ll give the synopsis and leave the fine details for later.
I find merit in conveying the condition as an evolving one, as the manifestation of the symptoms has changed significantly with time. I believe in that change over time, lies clues to the pathology underlying the condition. As the major driver of this condition is a cascade of dysfunction within the physics of the musculoskeletal system, a progressive change in the symptom presentation may very well indicate and serve as evidence to a general pattern of degeneration occurring alongside the more acute, symptomatic, manifestations. In turn, this sort of chronic degradation may pose a bad omen for future disease progression. With that in mind, let’s start from the earliest presentations of symptoms I believe may be associated with my rib problem, and work our way to the present day.
Since this time period is placed far back in my personal history, it’s difficult for me to accurately remember every symptom and the exact sequence of events. These symptoms were present, but its a bit vague internally as to their exact appearance relative to eachother.
One of the first major symptoms to appear was recurrent migraines, with aura. The first migraine I can recall occurred when I was at a public pool while attending summer camp. I first noticed an intense headache and light sensitivity and went under a playset that was poolside to hide. In my cover, I then started to notice an intense sensitivity to sound. I curled up in a ball and wrapped my arms around my head, trying to cover both my eyes and ears. Some of the other children thought it would be entertaining to take turns popping their heads underneath the playset and screaming at me. I continued to hide out under the playset until my mom eventually arrived to pick me up and take me to my pediatrician. On the way to the doctor’s office, I noticed visual auras in the forms of halos around objects, after images, and colored blobs of light. The pediatrician diagnosed me with migraine with aura after I explained my symptoms and family history of migraines (my sister also experienced them).
These migraine episodes would continue throughout this age range, with a frequency anywhere from once or twice a week, to once or twice per month. The intensity would vary, but they were almost always quite severe and would leave me relatively non-functional. I’d often need to stay home from school, or leave school early when they’d occur.
Outside of the auras present during the migraine attacks, at some point prior or proceeding this first migraine attack, I noticed a shift in my general visual perception. When staring at objects with little visual noise, such as a large mono-colored wall or the sky, I’d perceive what appeared to be television static. This phenomenon was especially present in complete darkness, with or without my eyes open. As far as I can remember, it never progressed past this point during this period, but I’d say it was definitely an early form of the visual snow I continue to experience in the present day.
In this period, I also noticed the earliest signs of some neck discomfort. It was relatively minor at this point, and was not of any particular concern. When I did notice it, it seemed to be more prevalent on the left side than on the right. Further, I took note of a higher-than-normal amount of flexibility in most of my joints, being told that I was “double-jointed”. It wasn’t particularly extreme, but it was definitely abnormal.
As I progressed into the next time period, the symptom presentation shifted in a few ways. The migraines were still present with the same relative intensity and frequency, and the visual snow was fairly stable. The biggest changes in terms of physical symptoms was the appearance of more generalized back pain, and the start of drop attacks which both began to occur around age eight or nine.
The back pain was relatively minor at this point and occurred throughout the thoracic and lumbar regions of the spine. Honestly, I feel this can be attributed as much to an overly sedentary lifestyle as I could it could be to the condition I’m investigating in this work. During periods of time where I was relatively active, the symptoms were fairly minor. School chairs being unergonomic may have a significant role here
Neck discomfort was relatively stable, but I do remember it becoming more frequent at this point. No real increase in intensity, but a definite slight increase in frequency or at least awareness. Again, it would generally be more localized to the left side.
Drop attacks were an interesting new development. From around age 8 or 9, I began to experience episodes where my vision would black out and I’d briefly lose consciousness and postural control, and would collapse to the ground if I did not brace myself against something. These drop attacks happened relatively infrequently early on, but began to increase in frequency towards the end of this time frame. They dramatically increased in intensity later on, which will be touched on in the next section.
During this period, I made a few visits to doctors about the cause of the drop attacks. I ended up at a cardiologist, who diagnosed it as orthostatic hypotension, and recommended I dramatically increase sodium intake. I complied, with little change in the symptoms, so gradually over time I reverted back to my old diet.
In addition, I began to experience intermittent gastrointestinal distress. At this point, no real pattern was present, other than a vague association with the migraines. I mention it more for completeness, as the issue makes an appearance later with a more direct connection to other symptoms. These symptoms did trend upwards towards the end of the period, which may tie into their ultimate root cause.
This section will be a big longer than the others, as it includes a major growth spurt, and marks the appearance of the many of the symptoms that are still present today. This was a fairly jarring period, as it felt like my body was breaking down and losing the ability to function normally without any real explanation provided to me. I’ll touch on each symptom briefly here, but a more in-depth explanation will be presented in future articles and the main work.
I had a major growth spurt at age 12, during which I grew around six inches in under three months. The headaches, visual disturbances, back pain, and neck issues all experienced a massive increase in intensity both during and after this growth spurt. Regarding the headaches, the biggest change I noticed was a gradual decrease in the frequency of the recurrent migraine-type headaches and a corresponding appearance of near daily general tension-style headaches. These headaches would usually not be present upon waking or would be relatively minor, but they would almost invariably progress throughout the day. They would start at the base of my skull, and slowly radiate outwards, covering the occipital, temporal, and parietal regions of my skull. They would almost always be preceded by neck pain, and there wasn’t really an effective method for getting the symptoms to subside. I tried various over the counter pain solutions, but nothing really provided relief other than lying in bed or otherwise distracting myself from the sensations.
The visual disturbances again increased in intensity, with the new addition of “shocks” that would happen when I turned my neck in certain ways. These were usually perceived as my entire visual field abruptly “shifting”, as if my field of view was a monitor and someone tilted it to the side, accompanied with a physical “electrical” sensation. The static became more intense and dense, and became noticeable in almost all situations. In addition, the aura-like effects such as colored blobs and shapes increased in occurrence and magnitude, particularly during more severe headaches and neck symptoms. The only real distinction between the migraine-type headaches and these new headaches was a lack of sound and light sensitivity with the new variety, and the fact that the new variety nearly always coincided with the neck pain.
The back pain and neck pain also increased significantly. During the early portion of this period, there was a gradual increase in the perceived level and frequency of pain in my neck and back, and I began to pursue chiropractic treatment which offered some amount of relief at the time. The back pain was in both the lumbar and thoracic regions, and the neck pain was bilateral, but often more intense on the left side. My neck started to feel noticeably “strange” at this point; movement felt restricted and turning my head to the left felt subjectively different that turning to the right. Slight scoliosis was noted by a chiropractor at this time.
Beyond the neck, there was also a more general sense of instability and asymmetry to my posture. Sitting or standing with proper posture became difficult, and as a result my posture gradually degenerated. This was especially evident in my neck, and holding my head up began to feel very difficult, like I was trying to balance an orange on a pool stick. There was also the addition of popping and grinding sounds and sensations in my neck and upper back which certain movements, particularly rotary ones.
In the jaw, I began to experience an cracking and popping sensations in my temporomandibular joint. I started to notice clenching during sleep and would wake up with my jaw feeling locked. I’d have to stretch my jaw open to unlock it, which was accompanied by large popping sounds and the sensation of shifting within the joint capsule. There wasn’t any real pain associated with it, but there was a great deal of discomfort. The popping and grinding would also occasionally make an appearance when talking and was especially evident when eating.
A constant ringing in my ears, tinnitus, also made an appearance after the growth spurt and coincided with my TMD. It was only slightly noticeable when other sounds were present, but in silence it was deafening. When TMD symptoms were worse, it was worse. When neck pain was worse, it was worse. It was always present during this period after the onset.
Coinciding with the symptoms was a general decrease in the quality of my sleep. I would often wake up in the middle of the night due to discomfort. Staying asleep throughout the entire night was a challenge. Likely due to this lack of quality sleep, I was generally lethargic throughout the day. When I did not have to get up at a particular time, it wasn’t uncommon for me to sleep 10-14 hours in a day.
The strangest symptom on the list, is the beginning of a need to “recalibrate” my body. It’s hard to explain exactly what I mean and what this involved, but in essence there was a constant unconscious feeling that my body was “out of alignment”. Certain stretches and bodily movements could provide temporary relief to these symptoms. These typically only involved adjustments made by the joints in question with little “external” adjustment, I rarely would manually set a joint. I would contort my body in a certain way, feel bones and joints shift (generally vertebrae), and a slight sense of relief would present itself.
These were intuitive movements. I wasn’t following a set routine, like yoga or physical therapy, but they seemed to follow general principles that appear in those exercises. Typically, it was focused on all regions of the spine and the hips at this point.
There was also intensification of the gastrointestinal issues. Coinciding with the neck pain, I had near daily bouts of intense abdominal cramps. These also involved constipation and an overwhelming urge that I “had to go”, but “going” was difficult. Sometimes these episodes would pass without any actual “action” being taken
During this time, the changes that were happening during the early adolescence period began to consolidate and stabilize. True migraine headaches were mostly gone at this point, replaced with the daily headaches that would occur after a certain number of hours standing or sitting upright. All new symptoms that appeared generally remained constant or intensified, and the general sense that something was wrong in my body increased dramatically.
To keep this section manageable in length, symptoms that remain relatively unchanged will not be mentioned in detail. However, this section will also 3 “injury” events, which caused new symptoms or magnified previous symptoms.
The neck issues, visual disturbances, back pain, upper limb dysfunction, and hip & lower limb disfunction all increased slightly in intensity during this period. In additional, the previously mentioned “recalibration procedures” changed in nature, corresponding with an increase in the general sense of discomfort/tension in the body and an increase in muscular strength.
A slight improvement in some areas was obtained when I started working out consistently, namely bodyweight and barbell movements. I started working out consistently around the fall of 2015, and by the summer of 2017 I had gone from around 165 pounds to 195 pounds. My performance on lifts was always low for my weight, especially the bench and overhead press, but generally I noticed a large increase in my ability to hold my posture. The recalibration procedures became less frequent, but more intense. Following a workout, I would often have a massive decrease in visual disturbances, and my vision would “clear” to a large degree. Depth perception also improved when this happened.
Unfortunately, while I noticed some improvement from working out, I also noticed some negative consequences. I was very much an ego lifter at the time, and I wanted to push the weight higher at all costs.
Where are we at?
Symptoms at present, current management, tracking methods
Whats the overview of the theory (theories?) behind the pathology?
What gaps remain?
Big ol flowchart (s?)
What’s the general plan for correction?
What still needs to be done?
Writeup? Status? Frame it.
Website purpose, goals with it, things to do/add
Video presentation plans, other outreach
Close it.