You might not realize this, but being a Dr's patient means that we have to provide them with enough information in order to be diagnosed, treated, or even heard. We're essentially consumers, and they're providers of services and goods... all be it, medical treatments and medications (if needed - and the correct ones!)
It could be compared to joining a dating site but not filling out all of the vital information in which to find a proper date.
You cannot go in to your Dr and simply say, "I can't sleep, have no appetite, and get dizzy." You have to give them parameters in which to gauge not only what is causing it, but when it is happening, how often, under what circumstances, and then judge by their medical knowledge ALL of the many things that it could be related to - way before diagnosing you or ordering the correct tests for what you're going through in order to even start any sort of treatment plan.
"I can't sleep" could mean many things. It could mean you're having trouble falling asleep or staying asleep. It could mean you have insomnia. It could mean you have restless legs syndrome or neurological distress like 'anxiety', 'panic attacks', adrenal issues, etc.
"I have no appetite" could mean many things. It could mean that you're more often than not, not hungry. It could mean your taste pallet has been altered and you no longer like the foods you're used to eating. I could mean that you're having intestinal or stomach pain or constipation.
"I get dizzy" could many many things too. It could mean that you're having vision issues, ear - nose - or throat inflammation, or even neck bone or shoulder muscle pains/swelling. It could also mean you're having vertigo - which is not exactly the same as dizziness.
Many traumatic brain injury survivors (as well as post-concussion survivors) have many similar symptoms but cannot accurately describe when/why/how often/ or what is causing them. It is impossible for our Dr's to know exactly what's going on with very vague information that we can give them.
With amnesia (or any other memory loss issues) it is VERY hard to keep track of even the most minor to major issues we keep having medically. Even more so, it is harder to accurately describe how our lives have altered due to the medical, emotional, and day-to-day changes we've experienced and are still going through.
In short, our medical healthcare providers can ONLY do their jobs with as much information from us patients as possible. This is true for medical care, psychology, psychiatry, physical rehab, and so many other forms of the medical fields we utilize to improve our overall health and wellness (aka: our quality of living life.)
I'm working really hard - even with amnesia and post-TBI issues - to create booklets for us patients to use in conjunction with our healthcare providers and care-givers/loved ones. These booklets include daily "charts" in which us patients can fill out in real time (as things are happening) and then share them with our Dr's, nurse practitioners, and care-givers in order to have a complete and accurate account of what we're living day-to-day. You know, the things that are impossible for our Dr's to witness themselves.
Without this vital information, it is not possible for our Dr's to create an accurate diagnosis - which means we won't get the treatment plans we need in order to improve our lives, take back control of our health, and to move forward into managing our daily lives while improving.
My biggest challenge with my Dr's has been lack of ability to give them clear information. By the time I get to see my family care Dr, I've lost recollection of what I needed to convey to him. From that, I'm not getting the right diagnosis or treatments in order to improve my daily-life situation and the issues involved that he could and would help me with. Slowly, over the last (almost) two years, I've finally been able to give him enough information that he's now able to run the right tests, refer me to the right specialists, and truly knows how much my daily-life has been altered due to the symptoms I'm dealing with all the time... and how they revolve and change.
I fear, that if I cannot provide this booklet to other patients going through the very same things I'm going through, none of us will see improvements, hope for a better and more manageable daily life, or any sort of productive changes.
I've started teespring.com t-shirt campaigns in order to fund not only the last bit of dental help I need (in order to stave off infections from the teeth that broke from my accident that caused my brain injury) - but to pay for the costs of the booklets to be printed and delivered to every single patient like myself whom truly needs them in order to improve their medical, mental, and daily-health.
I didn't get a manual with my head injury or amnesia. I didn't get any real or valid advice on how to get better. With this booklet, patients like me can have an actual fighting chance at improving their lives. I cannot drive anymore, hold down a regular/typical job, nor can I find "work at home" that is legitimate or fruitful.
MANY patients are NOT lucky/blessed enough to have generous parents whom are able to not only house them, but feed them and take them to appointments and encourage them to keep moving forward.
MANY patients get stuck, get worse, and never return to any state of healthy normalcy.
I refuse to sit idly by and watch this continue to happen to people who never asked for these injuries or side-effects (life-long effects in most cases) and do nothing about it when I have such a great idea of how to help them to help themselves.
Please, if ever you could open your minds to something you're not living through, open your minds to this. People living with brain injuries and amnesia cannot control what they're going through on their own. They cannot improve their situations without guidance and long-term help. This booklet can open the floodgate of honest-to-goodness life-changing help that they desperately need, deserve, and would fight for themselves if they were truly able to.
Thanks for reading... until next blog.