July 18, 2018
I spoke to the nurse who comes every other day and she said she can come every day and administer the infusions at home so I don't have to go inpatient for 6 weeks. She is really kind and compassionate and has a calming effect on me which is good because I totally freak out with IVs.
I can't even look at them and knowing it's there freaks me the fuck out. They are going to do a pic line so it will be in all the time so I'll be in a stage of moderate hysteria for at least 6 weeks which is no fun for me.
I'm also worried I about having the pic line inserted. They have a hard putting taking blood and putting in a basic IV and after 6-12 tried I simply refuse.
I don't know how much it will hurt or how long it will take to insert and position a pic line but I'm pretty sure I'll be carrying on like a toddler having a temper tantrum the whole time.
I will ask them to use lidocaine which they did when I was at Miami and the surgeon got it on the first try and k didn't feel a thing.
Then the nurse needed to take blood from my other hand and I screamed like a baby when she started digging and digging and digging for about 5 minutes.
I'm very very happy with my new physical and occupational therapists and they did a VERY thorough evaluation.
My occupational score is 20 on the right side and 26 on the left. It should be 60 on both sides but I'm still struggling with my hands and still have trouble writing my name or forms and on bad days I have trouble holding a fork or opening caps and locking or unlocking my door and mailbox.
Despite those limitations I am 110% better than where I was prior to the surgery four months ago.
I am still hyper reflexive and having terrible myoclonic seizures relatively often but they are mostly on my right side and they pass quickly.
That can be controlled through medication and I'm on a very high dose of Tizanadine (a muscle relaxer) and 10mg of Valium 3x per day.
My neurosurgeon has referred me to the Brain and Spine Center at University of Miami Hospital for an emergency appointment (prioritized as Urgent) so they should be able to get me in within 72 hours.
My grandmother who is 89 comes to ALL of my appointments with me and has been a tremendous help and cheerleader and bought me lots of comfortable clothing and footwear that is both comfortable and appropriate for my daily therapy, treatments and medical appointments.
While I was in rehab I was in a wheelchair or in bed and was not allowed to use the bathroom on my own.
Because of the damage to my spinal cord I don't have as much advance warning when I have to pee and I would have to wait for a nurse or CNA to transfer me from my bed to my wheelchair and to the toilet. Often times they didn't get there soon enough so I would wet myself and my linens and clothes would have to be changed several times a day.
It was humiliating, dehumanizing and embarrassing but my grandma was like a rockstar and came to see me every single day and washed my clothes and panties for me so they would be fresh and like new when my OT or CNA helped me shower, pick out my clothing and fix my hair so I looked human again and that was a huge step that helped me to overcome the horrifying trauma that was thrust upon me when my mother came to visit (a total of three times) and told me that I look like a unkempt zoo animal and was afraid to touch me or help me clean myself up so I spent 3 months in the hospital with knotted, dirty and unsanitary, bloody yoga pants and one tank top and no socks, shoes or sanitary napkins.
When my mother did come to visit me, she brought me socks and a brush with some hair bands but took them back and returned them and brought me one pair used panties and said she couldn't buy me new ones because it was too far to walk or drive back and forth to visit me (it's literally less than twenty minutes) and she said it was too difficult for HER to handle.
Never asked me how I was and despite the fact that she was a social worker she refused to lift a finger to help me get proper treatment and medical care.
She would come in wearing Prada and Kate Spade, Michael Kors and literally left me on the floor for 23 hours when I fell after being discharged and the building manager contacted her because the paramedics couldn't get in since she changed the locks and refused to give me a key to my own apartment. She said her shoulder hurt and she couldn't help me shower or help me off the floor or drive me back to the hospital.
At that point she sent my dad an email telling him that I was seriously ill and she was unable to help me and she washed her hands of the entire situation.
I was afraid to ask my father for help because all I've heard since I moved to Florida was how much of a burden I am and that I was such a terrible child that my father left me and she was stuck with two kids and no child support forcing her to marry a man she didn't love for the money so she could put a roof over my head and sent me to a good school in Great Neck, New York.
When that marriage failed she again blamed me for scaring him away and called my dad and asked him to pick up sister and I when I was 9 years and told me recently that was when she gave up on me and any future relationship because I "abandoned" her.
I've been carrying that around since I was a small child and my mother reminds me at every chance she gets and I'm suffering terribly a result and isolated myself from my friends and family since on some level I started to believe it and internalized all the horrible things told me about my father and didn't call him because I was afraid that if I called and he refused to help I would know for sure that my mother was right and he never loved me and felt my life was not worth saving.
Well that didn't happen and once my mother told him I was paralyzed and she was unwilling and unable to provide even the more basic level of care required to survive.
-insert break here-
I was wrong about my father. Very wrong. And despite being totally mental and in a prednisone induced manic episode and totally traumatized by the way my mother treated me while I was in the hospital and reflections on how abusive she has always been towards me throughout the years, ultimately my father came through for me.
He came through for me in so many ways and he was there for me when I was at my lowest point and helped put me back together again.
For as many people who abandoned me during my illness because it was difficult for THEM, I am so grateful for those who were there. For those who could see through my illness and through my tears and my struggles and loved me unconditionally.
I am a new person. But if you know me well enough you can easily see that I am still the kind and loving person I have always been.
And yes, I have fits of rage. I talk to much and often give more of myself to others than they deserve but I am learning to love again. And more importantly, I am learning that I deserve to be loved.
I am learning that I am worthy and deserving of love and letting others help me and learning how to ask for help when I need it.
I have a long road to recovery. I just passed the 3 month mark and it will be a good 9-12 months before I see the full results and outcome of my surgery and rehab.
I have good days and bad days. Some days I can walk on my own and write my name and open my mail box. Other days I can't get out of bed and I scored a 1 on the rehab scale yesterday of being able to get up from a sitting position unassisted from a chair. It took me several tries to stand up without using my hands and offer it takes me an hour or two to pull myself up out of bed and I need my handy walker to stand up and steady myself.
But in time I will heal. I couldn't do that at all in the not to distant past. I'll get there. And I won't forget this past year. I won't ever be able to repay those who were there for me and I won't be able to forgive those who were not.
And that's ok. I will treat others the way they treated me. And that's very good for some people and very bad for others.
-insert break here-
I will leave you with this letter I wrote to the greatest love of my life. The keeper of my memories and personal journal and sounding board. He knows who he is, so his name is irrelevant. But I picked up where I left off earlier in a letter to him as he knows me better than anyone else. So before you abandon the thread, read it all the way through. And know how much I appreciate each and every one of my readers. Currently at a total of more than 1.5 million people who have stopped by my two websites where I have shared my trials and tribulations with raw, brutal honesty since I started the sites in January of this year.
Time to wipe my tears and do my therapy.
Please read on:
God, what I wouldn't give to make love to you right now. What I wouldn't give to be in your presence. I remember distinctly what it felt like just to be with you. We didn't need to have sex to make love. We could just look into each other's eyes and you could penetrate my soul without even touching me. I could always read your mind and thoughts by looking into your eyes. It's harder now as I have to infer what you are thinking and feeling across so many miles and often without words or the sound of your voice. But I can tell when you called the other day that your feelings are genuine. I could tell you do read my messages and that you know how hard this has been for me. To lose my health and independence so quickly and to feel so helpless for so long. Unable to feed, dress, bathe or use the bathroom myself. And the road back had been hard. But half the battle was in my head as much as my body. My mom crushed my spirit with he silence, inaction and the way she treated me the few times she visited. The fact that she never once hugged me or told me that she loved me. And I was so very sick.
She wouldn't help me shower or put socks on and she watched as I had seizures before her and she just sat there and looked at me with disgust and shamed me for looking awful and when she came she brought me lipstick and cheap make up as if it would make everything all better if looked pretty.
My god it's going to take a very long time to get over the damage she did when I was in the hospital which was just the crescendo of the years of neglect and abuse I suffered at her hands and at her mercy.
You met me when I was fourteen. We fell in love after years of a beautiful friendship and you loved me through the years and the tears. You knew I was broken and you loved me anyway. You believed in me when I didn't believe in myself. And I always knew you were a superstar in the making. And I'm so very proud of you. And I'm glad that you have such a beautiful family as much as I hate that it's not with me. I simply wasn't ready to come to terms with my illness and didn't know how to fix myself from all the hurt and you couldn't fix me but not for lack of trying or for loving me.
I'm growing stronger now. I'm growing stronger physically and emotionally. I'm becoming more resilient and as much pain and anger I feel having been misled, abused and abandoned by my own mother during the severe medical crisis of my life, learning to accept and adjust my mindset seeing the way my father, step mom and grandmother cared for me and hearing your voice and reading your messages has shown me that I am loved and that I deserve to be loved.
Yes, I am flawed, I am broken, I am proper mental at tines but I am not the horrible waste of a person "born without a soul or a conscious" that my mother makes out to be.
I didn't ruin her life. She did that all by herself. And it will take time for me to heal psychologically and physically but it will happen.
I will get through this and I will walk independently again and I will be stronger for it in the end. And tho we may be apart, the bond we share will never be broken. And through the years and the silence I will always remember the glory days of our youth. Discovering who we were together and alone. Growing up and growing together separated only by time and space because the bond we shared and still have is not one that can be broken by the most basic limitations of the physical world.
I will meet you on the other side. Perhaps another dimension or another life time where we will be born again having learned the most difficult lessons we need to on this plane and in this earthly realm.
I love you. There's nothing you or I can do to change that.
All of my love,
Elyssa
--Nashville, Tennessee
"You may not care how much I know, but you don't know how much I care."
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