This is my first blog ever, and geez I have a lot to say. So much on my mind CONSTANTLY. For those that don't know, it's been a rough year and a half for me medically and emotionally. The past few months have been the worst and the best, if that makes any sense. Let me start from the beginning...
I was diagnosed with spinocerebellar degeneration (ataxia) on March 17, 2010. Happy St. Patrick's Day...one that I typically don't celebrate but one that I will never forget. My neurologist called me personally and broke the news to me as gently as she could. She wondered what questions I had, and honestly, at that moment, I don't think I could have even told her what my name was. I don't remember hanging up the phone, I only remember dropping to my knees and sobbing. I had suspected that I had it, however suspecting and KNOWING are two totally different things. I've had it for at least 3 years, that's when my last brain CT was and it was obvious then that my cerebellum had begun shrinking. I asked my neuro at a later visit when I had genetic testing done when we would do another CT. She placed her hand on my shoulder, looked me in the eye and told me she wouldn't put me through that, she didn't think I could handle it. Many don't know what this disease is and I wouldn't wish it on my worst enemy...it is incurable and it is progressive. All I can do it fight with everything inside me to battle the effects I have of the disease. Believe me, it isn't easy.
Move forward a few months and my gait begins to worsen as my left knee started giving out on me. I couldn't get up off the floor, I couldn't climb stairs, I was falling all the time...all I could think was "I'm losing time and I'm losing my ability to walk, something has to be done". I went through all the hoops to have a total knee replacement 12/13/10. The joint couldn't be saved and a new prosthetic showed me hope that I could get back to walking without the outside world knowing what was wrong with me neurologically.
Fast forward to the last of March 2011 when I was visiting family in Florida and my entire left leg swelled so bad I couldn't even wear a flip flop or get my pant leg up/down. Went to the ER while there where they did a lot of testing and put me on antibiotics for precaution but they FAILED to tell me that my blood cultures showed that I had a staph infection. I found that out when I returned home to my ortho. More antibiotics, pain, swelling, knee buckling and giving out lead me to a Bone Scan which confirmed osteomyelitis....and osteoporosis. My ortho didn't want to believe that I had a bone infection so I had a Ceretec Scan which is quite invasive. That scan showed severe osteomyelitis the entire length of my left leg with increased uptake in my liver and spleen. I was scheduled for surgery the following week to remove the implant.
5/2/11 - knee prosthesis is removed and a cement block is placed in the joint cavity and I'm immobilized, in a wheelchair, on IV Vancomycin twice a day. After a week in the hospital, and showing signs of problems while I was there, I was discharged and taken in by my most generous, loving, caring friends Jen & Josh. Had I not been living with them, I don't think I would have realized how close to death I really was. I was readmitted to the hospital on 5/17/11 with tachycardia and found to have several blood clots in my left leg. Jen brought Lucas to visit me and I just had the feeling that something was seriously wrong. I didn't want Lucas to see me that way. Infectious Disease came in to see me shortly after they left and as soon as she saw me she said "I want you in the ICU", followed by the critical care response team rushing in my room. My blood pressure was 75/40, my heart rate was 148, my temp was 104.5, my lips were blue, I was freezing and I couldn't breathe. Rush to CT of my lungs showed that both lungs were full of HUGE emboli...there was barely any clear space in either of them. I hardly remember all the people hovering over me in ICU and I have no memory of again nearly dying that first night when another clot passed thru my heart and infarcted in my lung (basically a heart attack in the lung). When I woke up the next afternoon, with my Pulmonologist standing guard over me, he said "welcome back...the good Lord keeps waking you up". Followed by "I've never seen a lung CT like yours on someone that was still living". I was terrified...and alone.
10 days in the hospital and I went back to the ortho who nearly killed me and told me that he had to refer me to someone else. I would not allow him to touch me again. Funny, he said to me as I was being wheeled to a room "I'm glad you're on this side of the living"....and I told him "no, you are very lucky....or maybe not". He admitted that he'd made mistakes and did not hesitate in referring me to someone else. My concern? Who would want to fix all the mistakes he had made? What a liability.
6/18/11 - I saw the new ortho that agreed to take my case. He was furious at what I'd been thru. He wanted to put a new knee implant in the very next day until he realized in reading my operative report that I didn't have a filter in my groin. The purpose of the filter? To prevent blood clots to the lungs while you are unable to ambulate. The filter was supposed to be put in when the knee was removed. I was admitted that same day for filter placement and had another total knee replacement on 6/30/11. My recovery has been slow...my left leg is now shorter than my right, my ataxia is worse than it's ever been and I'm discouraged.
Oh and did I mention that my neurologist feels I have early stages of Parkinson's Disease? The tremors are terrible. It often feels like I have an earthquake about to erupt in my whole body.
Okay, now that the depressing part is out of the way, let me share some positive. I am one very lucky girl. I have friends that are there for me no matter when I need them...they cry with me when I need to cry....they lift me up when I feel that I can't be strong any longer...they love me unconditionally and don't see me as disabled. To feel that kind of love is overwhelming in my heart.
My faith in God has grown tremendously since all of this has happened. God spared me for a reason. I don't know what that reason is, but He isn't thru with me on Earth yet and I thank him every day for that. It's a feeling that I can't explain...the swelling in my heart when I sit in church and sing, I don't ever feel that I'm showing Him how truly grateful I am to still be here but I know He knows what's in my heart and that's all that matters.
Being "disabled" and being labeled that by some people has lead me at times to become agoraphobic. I have panic attacks that I'm going to fall or trip or stumble. I'm not perfect and I don't want to be judged so I stay home. I can run into the walls there all day and they just support me, they don't look at me funny. I'm really trying to overcome some of that and have recently put myself outside of the box...outside of my comfort zone...trying to figure out what it is that God really is leading me to do with the capabilities that I have to offer. Though I've been thrown one bad pitch after another, I remain positive and optimistic. I feel that if I am not that way, I'm telling the world and God that I give up and that's not an option for me. I'm a fighter, I am strong...sometimes even when I don't want to be. But it's saved my life.
I think I'm headed in the right direction. To every single person across this country that has been praying for me, the words "thank you" are not sufficient. They don't show what I really feel in my heart. To my dearest friend Jen, you have been my rock even when you didn't know how to make it better. You took care of me without hesitation and I love you for it. God put us together when he knew we needed each other and I am truly blessed to be your soul sister.
To anyone who reads my rambling, please do not feel sorry for me. Pray for healing and strength to keep fighting the battle. I am still the same fiesty redhead I have always been, ready to take the bull by the horns and say "come on, I dare ya". :)
