A year ago today I was fighting the remainder of the flu. I was working (Southern Patrol, my favorite.) I was still searching for the correct diagnosis. I was set in my routine. I was going about life the best I knew how. I was a person, who despite her own knowledge, was very dead inside, figuratively and literally, and as I look back, a person that I don’t much like.
At 1400hrs I got a phone call that I wasn’t prepared for…the hospital telling me to get there as fast as I could because my great aunt was dying. It was an hour before shift change. I don’t remember my last hour of work for that reason. I don’t remember being relieved by the oncoming shift. I barely remember who I was working with that day. All I could do was hold in my tears and otherwise, be a machine. That was the last day that would ever work in Emergency Services. The last day I would ever talk on the radio. I remember almost nothing of that day at work. It was like any other work day and it wasn’t unlike any other day I’d come to work sick. Little did I know, it was a brand new beginning I wasn’t planning for, but one that I needed more than anything in my life.
That day was last day I’d see my great Aunt Betty for the last time. She wasn’t just someone I only saw on holidays. I had taken care of her for the last 15 years, some of it for years by myself. I loved her. No one thought she’d ever really die. She was the last of 12 children, the last link to the past in so many ways. If you’d known my Aunt Betty, you’d know A LOT! When I was growing up I considered my “family” as my mom, my brother and me, but just outside of that was my Aunt Betty and my Aunt Jane (Betty’s sister) and then the rest of my family. I used to spend weekends there. (I’ll spare you the details of ALL of my memories.) My Aunt Jane died 14 years ago. My brother died 2 years ago. And now my Aunt Betty was dying. (Both of my Aunts died in the middle of a major snowstorm.) I said my goodbyes 1 year ago. My Aunt Betty passed peacefully early the next morning and that was the best I could ask for her. I miss her terribly but carry her with me every day.
Her death would ultimately be the catalyst for my diagnosis. She gave me a final gift, though I’d have to fight through hell to get it.
During funeral planning and the actual funeral and wake (yes, we do Irish the RIGHT way! After all, she was the one who’d taught us!) I was on auto pilot. My pain quickly escalated which I associated with all the running around and being on my feet. After all was done and it was time to go back to work, I couldn’t. I ended up in the hospital unable to stand because of my back pain. (I have had a prior spinal fusion and have 4 bulging discs.) I was sure that I had herniated another disc. None of the tests the ER ran showed anything that would amount in the severity of my back pain. I was sent home with narcotics, a note putting me out of work and one telling me to follow up with my primary care doctor. I did. I went to my previous back surgeon and got a second opinion. I was put on FMLA by my primary care doctor. And the race was on; to find out what was wrong with me before my FMLA ran out. Keep in mind that I was still injecting my medication for my diagnosis for multiple sclerosis. Change was coming at me, good change, though I couldn’t see it at the time.
I went to doctor after doctor. I was tested for everything under the sun (except what actually ended up being wrong with me.) I was scanned in every way. What I was gaining was knowledge. I ruled out what wasn’t wrong to leave way for the knowledge of what really was. I became my own doctor. In February I went from a diagnosis of Relapse Remitting MS to Primary Progressive MS (the most aggressive form.) I started searching. I stumbled across a website which featured a very successful physician (I honestly can’t remember the name, at the time I thought it was just another blip on my radar) who had PPMS and was talking about the importance and healing power of diet. This doctor had gone from being in a wheelchair barely able to move to a healthy person who could ride a bike with her MS in remission, in 18 months! Right there, I researched the diet and ended up going Paleo. I got such an instant result, I took myself off my injections. (I later learned that because I had taken that medication it sped up the problems caused by my Lyme/Bartonella/Babesia/Mycoplasma which accounted for why I got so much sicker in such a short amount of time.) I ended up in the hands of the best person I could. My NP. She was the one who thought outside the box and worked WITH me. She was the one who put me in the hands of the people who are now saving my life.
I GOT MY DIAGONIS(ES)! April 3rd, 2014. The day my prayers were answered. I experienced so much during my prep and during treatment. I can look at all the things I’ve lost, all the misery, torture, self doubt, suicidal thoughts, all the negatives. I can look at them and be thankful for each and everyone of those things because it has made me the person I am today. They have humbled me deeply. They have made me a person who is evolving. They have caused me to gain more than I have ever lost.
Even as I lay here sick with a cold (on top of my normal stuff) I think about me as person. The person that I was a year ago is gone and while I’m thankful for the things she taught me, I’m not sorry to see her go. She was formed of sickness and bitterness, jaded and cynical, protected by chains and irons…she had lost her innocence, her heart, her ability to love others and be loved, she was numb to everything except pain. Some of her things still remain, I’m still cleaning up shop, but to look on the inside you would hardly know she even existed.
This year I have to learned to love again. I have regained some of the “wide eyedness” of my youth. I have allowed myself to be some of the child that I don’t think I ever really was. I have gotten closer to family and friends. I have lost some people from my life that I will miss until the day that I die, but I have learned who will stand beside me and love me through it all, even when I deserve it least and/or when I need it the most. I have formed deeper, more meaningful bonds and relationships. I have opened my heart again. I have passion again. I have regained the ideas to follow my dreams and to live from my heart. I have become more spiritual. I have become more attune with the world and nature and my environment. I have grown as a person. I am a constant work in progress. So, I think that good and the great far outweigh the bad and horrid things.
Life is a balance, whether we know it or accept it or we don’t. I’m still working on it. I’m thankful for each and every person that has crossed my path over the years, particularly in the last year, because I have learned something from them all. I’m thankful for every person that helped in any way. I’m thankful that I have the mother I do. I’m thankful for my crazy dysfunctional family. I’m thankful that I have had time to spend with my grandmother. I’m thankful for so much. Mostly I’m thankful that I’m alive and that I’m getting a second chance – to be able to live my life healthy, happy, loved and to make it anything I want it to be.
I’m still sick and in some degree I always will be. I can’t deny that. I’m still fighting for my health. I’m still fighting for my retirement and disability. I’m still fighting to let go. But most importantly I’m still fighting at all! So while everyone is still making New Year’s Resolutions, my only one is to continue to change. “Change is hard. We fight to hold on and we fight to let go.”
I’m having more good days than I was during this break, than I ever have. My mental clarity is improving (even though my fine motor skills are getting worse. They will improve, its just the way treatment is hitting my brain now.) I learned that some of my hallucinations are actually my brain making new connections. I will never be the person I was but I don’t mourn that anymore, I celebrate it. I will never have my brain back the way it was and while that might mean I can’t do certain things (my job included) that I used to, it doesn’t mean my life is over. I never asked to be sick with all of this. I never wanted any of the doctors visits and pain and depression and isolation and misery that came with being sick. Either way I got it. Maybe God and The Universe and my guardian angels knew that I needed this. Maybe they were tired of waiting on me to do something about the way I was living. Maybe this is all part of “The Big Plan.” I don’t have answers to any of those things and maybe I never will. It doesn’t matter. What matters is that it happened.
I know that this year is going to find me even more happiness than last. I still have a long way to go in treatment and I will still have horrible days. I will always have Lyme. It has been the center of my world this year because it dominated and controlled everythare ing I have done. I might start out on a rough note, but I’m going to continue to shift focus, because Lyme will not dictate my life any longer or any more than it has to and I will push with all I have to knock it out of center.
And whenever they take out my central line, I’m celebrating like New Year’s/Christmas/Thanksgiving!
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