Self-Reporting Is Important

I am realizing that there are a few issues that could be related to the cognitive issues Ive been fighting with over the past few years. Thing is, I have never really given them as information to a doctor (even my GP), because I simply have always thought they were just a part of how my brain works.

But, after taking the vocabulary test that has been making its way through my Facebook friends, and having two entirely different results (one last night, just before bed, and again less than an hour ago [relatively early in my day, since I slept in until almost 1:30 pm]).  Last night’s test gave a result of 17,700 words, while the more recent one gave a result of 30,150 words.  Now, I am fairly sure that this is a test meant for entertainment, rather than a particularly rigorous medical or psychological test, but the numbers are somewhat significant to me.

As usual, I started looking for medical or psychological articles relating to cognitive issues being more likely when tired versus being awake and alert.

Except, as I started reading, there were other issues that started being discussed in those articles.  Things like the word deafness I have experienced for most of my life (which has become more noticeable the older I get) which isn’t completely just the issue of not recognizing phonemes (but, tends to change the word from a  simply innocent word into something dirty or vulgar), as well as some other auditory processing issues. Or the fact I experience phantom smells, which can often make my sense of taste wonky. This isn’t at odds with the fact I seem to be highly sensitive to taste, which often means I need more bland food than the people around me.

What I am finding in articles is that most of these issues are a result of degenerative issue.  Given that the neuropsychologist, in his intake report, found it necessary to include the fact that I dropped a 5 lb. hammer on my head at 8 years old (to the extent that even now, 39 years later, still have a noticeable dip in my skull), I am realizing that this could have done more damage than either myself, my parents or the next door neighbor who reported me as having been “weaving down the driveway” to my mother approximately a week later.

The neuropsychologist did not consider it to be more than an “undiagnosed concussion,” but I did not — consistently with my other healthcare providers — report these other issues I have always considered just part of my normal self.

Given the extent of my depression and anxiety due to living with my ex-husband for so very long, it isn’t surprising to me that without that self-reporting and WITH the emotional and mental abuse and its subsequent minor form of PTSD that the gradual cognitive decline would be missed.

And arguing with my GP doctor last week about the fact that the cognitive decline does NOT seem to be related to my depression, anxiety and the (relatively minor form of) PTSD from the abuse was both frustrating and discouraging because she has been so supportive until now. But, if I have never revealed those eccentricities of my life, I cannot really blame her for getting to the end of her understanding of my issues.

I really do have quite a few specialists working on me.  I have my therapist (and wasn’t that a painful session this week, as she made me stay in the ball of pain that has developed over my lifetime from feelings of betrayal by the medical and psychological industries), I have the podiatric surgeon who has focused on my foot and ankle arthritis, the pain doctor (relating to both the back pain and the leg pain), I now have a neurology appointment next week, as well as the neuropsychologist who will be doing extensive testing in August. My GP also thinks an appointment with a psychiatrist would be useful – but that again might be an issue with me not self-reporting some of those eccentrices.

I am also trying to ensure that my GP gets a copy of all reports, procedures and other related information from these specialists, so she can know exactly what is going on with me, and we can discuss how my treatment plans with these specialists can fit into my normal daily regimen to keep myself as healthy as possible.

It still scares me, the idea that I have been developing this unseen brain damage for most of my life.  I am continuing to remind myself that this is ONLY a potential, not a complete diagnosis.  And, I won’t really know until both the neurologist and the neuropsych complete their testing.

When you do your own research into your own symptoms (or even if you hear that some of your symptoms relate to specific disorders), it is quite easy to start allowing your mind to act like the poor hamster to the right.  Your mind keeps circling these issues, and can, often, end up with you believing that you are deathly ill.  Hypochondria is no different than a scientist or detective trying to make the facts fit a specific theory, instead of looking at the facts with an unbiased viewpoint.

I continue to think that doing your own medical research, in association with working with your doctors or specialists, to ensure you can find ways to support the treatment modalities that are advised.  But it is far too tempting to jump down the rabbit hole into hypochondria.

What makes it even more of a problem is that someone like myself, who curbs those desires to self-diagnose when I notice them happening (which I equate with the end of the hamster gif above – I lose my sense of balance and eventually get thrown off that wheel), is often repeatedly told that they are either under the influence of Illness Anxiety Disorder or somatic symptom disorder, because either your symptoms (and your research) is outside of their experience or they feel that you are either lying to them or lying to yourself.

Which, honestly, goes back to the therapy session this Monday.  I think that might be the subject of another post – relating to my struggles with both the medical and psychiatric industry.


Categories: Body Health, Mental Retraining | Tags: , , , , , | Leave a comment

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