For anyone with an autoimmune disease, it is well known that it can take years, sometimes decades to have a solid diagnosis with which to FINALLY come to terms with, and to be able to gather up all the right tools to handle. What gets frustrating, if all those years weren’t infuriating enough on their own, is when the diagnosis keeps changing, at least for me. Since I was 19 years old, I have literally seen over half a dozen Rheumatologist’s, 3 Neurologists and a handful of other specialists and the diagnosis sheet, past and present, that my primary care doc keeps, is over a page long in my chart. It has been EXHAUSTING. Over the years, on more than one occasion, I have been tested for Multiple Sclerosis, because, if you have read my history, from day one, it has looked and sounded like MS, but the “test” most rely on, before digging any deeper is always an MRI with contrast of the brain to look for lesions, and as the Neurologist said last year, “your brain is clear and beautiful, other than scarring from the accident.” Yet, not a single physician has ever been able to agree on a solid autoimmune diagnosis and many have looked at me with suspicion and questions, wondering if there was actually anything wrong with me at all, and accusations of things being “all in my head,” even people I once called friends said that to me over the years as well.
For those new to their journey in medical weirdness, as I call it, this is called medical Gaslighting and don’t stand for it. I should have pushed people. I should have been a better advocate for myself and asked why other tests weren’t being performed along the way, because maybe, just maybe, I would have been able to start my journey to wellness many years before I did, which means I could have been helping others long before now as well!!!
Last year, I had a sudden worsening of my symptoms. Stumbling, falling, weakness, pain and numbness in my legs and such violent muscle spasms that I have to be seated or laying down or I will hurt myself. Instead of a referral to a Neurologist, my back doc was called in and surgery on my low back was immediately planned after a Nerve Conduction study came back saying there was a “problem.” Shortly there after, I had a couple issues with loss of bladder and bowel control, which led to an immediate MRI of my entire spine, without contrast mind you. The day I went to get my results from my back doc, as he was going over the fact that there was nothing structurally responsible for my issues, I asked him if we could be seeing MS. He told me there would have been loss of signal on my MRI, so that it couldn’t be MS, and scheduled me for surgery. This was February of 2020. I continue to fall. I walk with a cane now. The eye I had checked out almost 3 years ago, that was dismissed as dry eye from having arthritis, is painful every day and I am going blind in it now. The spasms were several times a day, but I have figured out how to medicate those with CBDa, CBD, and CBG, so they only happen when I am extremely fatigued and I have developed a pretty significant tremor as well as migraines several times a week. These continued symptoms led me to a Neurologist, finally, and to another MRI of my brain, with contrast, and BOOM, guess what, NO LESIONS!! This time I fought the doctor, I advocated for myself and told her I wanted the lumbar puncture, no matter the risks, even during 2020 and COVID, because I wanted to know 100% for sure this time.
I have Multiple Sclerosis. My cerebral spinal fluid is full of the little bands that MS doesn’t eat.
So what do you do when the diagnosis changes and there is no one to blame and nothing to do with your anger? You start FIGHTING! You become your greatest advocate and warrior! It shouldn’t take something like that to make you do those things for yourself, and that is what I am realizing today. I should have been doing that all along. I won’t do the “what if” game, because that leads to negative thinking and I don’t know if my readers have noticed, but that’s kind of not my style!! I am having a hard time channeling this energy, so I wanted to write about it and share my plan, hoping maybe it can help someone else along their journey to wellness!!
1) CRY and RAGE! – Then pull it together!
2) Talk it out or in my case, write it out
3) Support Groups – online, apps, in-person I know this sounds cliche, but people will always be your best resource! Instagram is an awesome place to find people with similar interests and ideas, oh and ME of course!!
4) Make a PLAN of attack! – Come up with how you want to handle things. Whether you want to take pharmaceuticals or if you are going to try plant based first. Who is going to be involved in your plan? Are you going to rely on others research, or are you going to do your own?
5) Find a support network. I already said that, I know. But I mean it. This is more than your immediate family, close friends and your docs. This can be old friends who you know have experienced disability or illness in some way and know they have empathy; or someone you used to know and you have seen their growth and realize your souls resonate with each other; someone on the other side of a screen you have never met but you share the same vision; the man at your local bookstore who has watched you come in lately and spend time in the Self-Help area instead of True Crime; your Barista; your Bud Tender(there are a few of mine who know my WHOLE story and they have never read this blog). A support network is much greater than we have been taught most of our lives, and with the internet it is worldwide, multi-cultural and much more diverse than in centuries past and it gives us opportunity in abundance.
6) Forgive your body. I have said it before and I will say it again. Forgive this amazing creation you live in for allowing you to experience this precious thing called life. Our bodies are these fascinating, biological machines that have flaws, and mistakes and yet, most of the time, they just keep going. It is our perseverance as humans, our souls, our HUMANITY that gives these shells life and makes us who we are, and we must be thankful that our energy has them to play in, for as long as we have on this earthly realm. It is a hard belief to live by, and one I must constantly practice, and something I will most likely never master.
7) LIVE! Just because you have had a setback, or a diagnosis you don’t like, or a prognosis that is less than favorable, this does not mean you stop living! Go to the lake. Go for the drive. Go and DO the things you still can and want to. Conserve your energy when you have to. Use a mobility aid when you need to so you can go and DO those things. Don’t walk through the grocery store if you want to go out with your partner that night. Don’t walk through the airport if you plan on spending any time with the family you just went to visit, use the cart or wheelchair. Advocate for LIVING your life to the fullest while conserving your energy, for you! Be your own best advocate!!!!
8) Learn about cannabis – CBD & THC – The research continues to pile up and the evidence mounts on many more disease states that shows the cannabis plant is beneficial in relieving many of the common symptoms of several diseases. Do your research. Ask questions. See if cannabis can help benefit your life.
Have a wonderfully wickedly elevated rest of your day!
Epigenetic Cannabis Coach