'Who are you?' Asked the Caterpillar
'I hardly know at present, at least I know who I was when I got up this morning, but I think I must have been changed several times since then.'
'What do you mean by that?' said the Caterpillar sternly. 'Explain yourself!'
'I can't explain myself, I'm afraid' said Alice, 'because I'm not myself, you see.'
I am going back to work soon because I must. I have no new answers, only pain. Genetic testing continues as the doctors dig deeper, realizing that the wish-yourself-well FND advice has only served to help stabilize my anxiety footing (A needed effort) but has made little impact on the undiagnosed movement disorder that hides behind it. It leaves me in a swirl of emotion, trying to find something in all of this fog that looks familiar.
My inability to maintain a level of functional stability is more than frustrating. The nerve pain is exhausting me and ranges from mild nuance to 5 alarm fire with very little warning. I can be completely "normal" one moment, and a few minutes later, suddenly have complete rigidity and nerve pain. It's like a roller coaster that is always climbing to the top. I'm either in a pain and dysfunction freefall, or I am climbing up to the next fall. At no point do I ever see a way of getting off of this ride.
A year ago, I took the advice of my primary doctor and sought the help of Pain Management. It took weeks to gain an appointment, but I was very hopeful. Up to that point, I had avoided almost all long term prescription medications to help with the exception of something for nausea and a muscle relaxer. I was immediately told by the pain clinic that they would not help me, because I had marijuana in my system, and I must be "clean" for 30 days and remain "drug-free" before they would provide any medications or pain assistance. I was devastated but refused to give in to them or to my condition. I could not stop using the only help I had, for 30 days, just so a pain clinic would give me a bunch of pills to take its place that I may not truly NEED. With movement disorders, the mainstream medications can actually make other aspects worse, hiding markers of the real condition and causing medical red herrings to derail treatment and diagnosis. I do not have it in me to play Russian roulette like that. Tardive dyskinesia is a real thing and has no cure. I am not about to risk that. This condition is bad enough as it is.
I found zero help but a lot of empathy due to the stigma of both FND and Marijuana, combined with the current lack of a formal diagnosis. I was a trifecta of medical NOPE. While what I was using may not have been the best strain for my condition, variety in a state where it is illegal, is limited by your source. It was still the best option for helping to knock me out fast when the episodes were so bad, sleep was the only answer. I am terrified of opiates because I know how bad this pain is and how quickly I would become reliant on them if I opened that Pandora's Box.
You don't have to swallow a pill simply because the doctor gave it to you... think very hard about the side effects on that little pill. Is what it is meant to do worth the gamble of what It could do to your system if you really didn't need to take it? We trust our doctors to understand and watch for improper medications, but medicine is no exact science, and no degree should ever trump your own common sense. Only you know exactly how you feel, and only you know when you are ready to take a calculated risk. Be sure you stand up for yourself when it comes to what you ingest.
In 2018 Oklahoma finally legalized medical marijuana. Last week, I was granted a neurologist recommendation for medical marijuana for Anxiety, Chronic Pain, and Spasticity. My card has not yet arrived, but my mind is racing at the very idea that I can soon walk into a dispensary, review my condition, and purchase strains tailored for those needs. I will finally be able to see if this plant really can help calm my condition or will I actually NEED additional pharmaceutical help.
Who am I? A fighter. Who are you?
Fed up with the BS doctors give you
37 M, Functional Tremor, with hyperreflexia, dysphagia, SBD, and urinary incontinence. All diagnosed.
WARNING: If you have FND and live in UK
