I have been very bad at writing lately and keeping everyone up to speed on my life. There are excuses, reasons and many other things that could give me a pass on all of this but there are too many people that have given their hearts, their time and their commitments to stick with me through this process, whatever it may end up being.
I will start by saying that I have been holding out on many of you about my true condition. Generally, when I write, I don't like to talk about what hurts or give bad news or if there is some bad news. I like to somehow turn my experience into a life lesson or a learning perspective. I won't gloss over with you with what's going on now. I just don't have the energy or a good perspective. Maybe by the end of this writing that will change.
I also want to apologize for my writing if it is incoherent or broken in parts. I have been having problems with memory and concentration. At times, my brain feels like Swiss cheese. But to give an inside joke to those that suffer from “invisible illnesses”, I look good on the outside.
My health has been doing a tight spiral since our December 7th house fire. It was going downhill somewhat after the death of my friends Scott and Cindy, and it started getting worse after the death of my dear old dad. I didn't think that it would take such a toll on me but it did.
In the two years before Cindy Semple passed away from metastatic breast cancer, we talked often via email, Facebook or phone about how our lives were going and we would give each other the "real" story. It often was tearful, insightful, depressing, uplifting...the whole gamut. But the one thing that I could count on with Cindy was her belief that no matter what, God was good and she was going to beat this cancer thing. She was also going to live life to the fullest.
I feel a great emptiness just talking about this because she was such a strong, unique person. She had been fighting illness since she was just a baby and she never stopped until her last breath.
In September 2011, Cindy wanted to come and see me in New York during my spine surgery to give moral support and to meet my wife Mary in person. Mary had grown quite fond of Cindy over the years but how in the world couldn't you. She was amazing in every sense of the word. Cindy and I could share experiences that only someone that went through that type of pain and uncertainty could understand and give comfort. Just as friends that talk with Mary that support a sick spouse or child can only identify with her.
Towards the last year of her life, I pushed Cindy to get out and do the things that she always wanted to do. I told her to tell people want she wanted to do and God would find a way for her to get there. Cindy took a trip to Israel that a friend of hers graciously paid for her to go. The thing that I gave to Cindy was the permission that she needed to ask for things that she needed and not go at it all alone. God puts people around us that can help us in so many ways and when Cindy allowed herself to be "taken care of" she was able to do things she wouldn't have been able to do before she died.
Cindy always gave me that extra pep talk to keep fighting. Not the kind that you roll your eyes at from someone that doesn’t know your pain, but something from someone that has earned your respect, hands down.
Because of her trip to Israel, Cindy had to stop her current treatment to be well enough to travel. Her doctor realized that Cindy was in the final six month run of her life and it was better for her to die enjoying life instead of working and fighting to live her normal life. Because of her travel, she couldn't come and see me because of course she had to start back on the treatments upon her return. I was sad but I could definitely understand.
In some of our last conversations, I told Cindy that you know that this is the last stand. I felt it in my heart and she felt it too but was just too strong to admit it. What I wanted to get through to her was not to quit fighting, but to accept where you are and leave your mark on life. Leave behind that wonderful legacy that was and still is Cindy Semple. We cried a lot that day just tears of happiness, sadness, grief and just accepting that we could not control our health and our time here on earth, but we could control what we did with our time.
I remember when Cindy passed away, I looked up toward my bedroom ceiling and said, “I’ll see you soon Cindy”.
I don’t know where that came from.
After all, I wasn’t riddled with tumors or given a definitive timeline on my life, but at that moment I think that my soul missed her so much that I wanted to join her and no longer be in pain.
There is so much confusion surrounding my prognosis and even my entire diagnosis that no doctor can put a timeline or treatment plan together. I am an enigma in many ways. But I am going to continue on with Cindy’s fight for life. I believe she passed that spirit on to me as well as to many others so that we could pass it on when it is our time.
On the night before my spine surgery, I was very nervous about what was about to happen. This was a very serious surgery that could leave me dead, more disabled that I was, or by some miracle make my life better. That night Cindy texted me and this was our last back and forth
(August 30th early am):
(Cindy): Thinkn about you!!!
(Cindy): R u ready?? God is!! He is gonna take care of ALL of you!!!!!!
(Andy): Ready as ever!
(Cindy): Just imagine all the people u love so much standing around u rt now holding hands & praying. Father, please take care of my brother today and make this journey successful so that he can walk his sweet little girls down the aisle some day. In Jesus name I pray...AMEN!!!!!!
(Andy): Thank you so much!! It really means a lot in these final hours before the "new me". Psalm 73:26-My health may fail, and my spirit may grow weak, but God remains the strength of my heart; He is mine forever.
(Andy): I borrowed your quote Cindy. I'm getting pinging left and right like a virtual pray over!
(Cindy): That makes me smile BIG as i sit in a hospital bed wishing i could be there. U have lots of people who love u & God tells them when it is time that they r to let u know that :)
(Andy): I'm with you tonight Cindy as well. You never part from my mind or heart. I saw a woman get hit by a cab earlier in the afternoon. The New Yorkers formed a human shield around her to stop traffic from coming through. I made my way through the crowd and comforted her even as she laid there bleeding and I could feel her spirit wrestling inside her trying to get away. I simply stayed with her a said a quite prayer while keeping her still. I knew somehow these were her final hours here on earth. She was bleeding from her head and I could see that her pelvis was shattered. Somehow I found peace in that moment of sorrow. Peace be with you Cindy, peace be with you.
August 30th, 2011, 1:42am, that was our last conversation.
After my surgery, my life was definitely groggy and in a fog. I learned that my friend Scott Stanich had died and I couldn't go to his funeral because I still couldn't walk not to mention I was still hooked up to all the stuff in the hospital. I was still hallucinating from the powerful pain medications I was given from cutting an eighteen inch gash through the nerves all around and down my spine, tugging and pulling it straight and putting in metal rods, screws and bolts. I was in a pain that I can only describe as screaming because that was all that I could do when I was awake and had to move an inch.
But I was alive!
I had made it through the impossible to see my Mary and I couldn’t wait to see my kids.
It would be another few weeks before I could see my kids because I had to learn to walk again and I also caught a nasty infection during the surgery that let’s just say made life much tougher and more humiliating.
When I was through with my hospice recovery at home, I tried calling Cindy but I was only able to leave her a voicemail. It turned out to be the last Friday night before that Sunday when she passed away. I felt something was going on in my spirit and I wanted to check on her. I knew she wasn't doing well since well before my surgery and I wanted to catch up and try to pass encouragement back to her.
I wasn't able to speak to her again but I know that she got my message. I could tell in the last picture that I saw of her with our friends Beth and Jeff that Cindy was at peace and knew that it was time. What a gift to all of us and not just to me.
I need her spirit now.
And that was it. Cindy was my constant person that got it, got the pain, got the daily struggle and she was gone.
I didn't really have time to grieve for her because my dad died the very next week.
I felt emotionally numb for a while although I did have wonderful dreams of my father for a few weeks. I knew both of them were no longer in pain and getting to know each other, laughing at how great being a free spirit is, no longer bound to this earth and all the pain that they suffered through was forgotten.
After our house burned down on December 7th, 2011, I felt my downward sloping health begin to turn into a tight spiral going straight down. The stress was really getting to me and making me angry at everything. Yes, I had officially arrived at the full on "anger" stage. It will rip your life apart in seconds if you don't have a patient, loving spouse and some coping mechanisms in place. I am still in this "anger" stage but I know that one day this too shall pass.
I haven't been feeling well for a while now and have been bedridden since the house fire. But it doesn't stop there and this is where I usually cut it off and don't talk about things like this but I feel compelled to share it with you because you deserve to know. My current doctor believes that I am beginning to show signs of Multiple Sclerosis. Now I have read that MS and NeuroBehcet's can't occupy the same body so if it is MS not just the NeuroBehcet's turning nastier, it would most likely be primary MS. But this is just speculation right now because I don't have the cash to get MRI's, bone scans and all the work-up I need right now because I don't have insurance.
Blue Cross Blue Shield threw me on the street October 31st with no carryover plan and they are now trying to weasel out of the spine surgery payment which has crossed over $250,000 now. We have maxed out everything we have so there are no reserves left. So I guess, I will have to get worse before I can get better. Exceptions are made for the dying but not for those that can still walk into the emergency room.
I have been bleeding internally for over a month now and I am officially anemic. Being anemic is a big deal for me, because my body is notorious for always overproducing blood cells (polycythemia). So this means I am losing blood at a pretty good rate. The doctors want me to do an EGD and Colonoscopy to find the cause but of course I don't have the cash so that isn't happening. Maybe I should start eating cork with hopes to plug whatever GI lesion or tear that I have. This happened to me several years ago but disappeared by the time the scoping was set up.
That is the beauty of autoimmune diseases. They come like a thief in a night and destroy you from the inside out. If doctors are fortunate enough to find the evidence left behind before it is washed away or put on the back burner for another pressing issue you are one of the fortunate ones. Treating the unseen is another story all together.
Hopefully this will disappear as well. Yes, I still suffer systemic pain in my bones, joints and muscles every single day. I haven't had a day where I have had pain less than 5 out of 10 since September 2011.
I haven't been completely out of pain since September 2008.
I do have a small hope that the NIH will permit me to come in soon for more testing but that is slim. Their funding was cut in 2010 by our wonderful Congress. No cuts for big oil or big money tax loopholes but an agency that helps the human condition, nah cut that stuff because we are all well and our system of pharma research and subsidized private research will be enough. (Insert rant) We are definitely living shorter and dying longer. And if we all do nothing then it will continue down this path.
Our country will spend 1.7 trillion on the fly to protect oil shipping lanes but will squabble over the scraps given to our human condition. Expecting to be cared for isn't entitlement, it is a basic human right that every person should be allowed affordable, complete healthcare or healthcare to protect them if they have nothing. Our current system takes everything you have away from you until you have nothing and still falls short of getting you what is needed to get you better.
A healthy population is a working population. Without your health, you have nothing. It makes sense to keep people healthy to keep our economy and our overall well-being healthy. If only FDR had not died before he implemented his extension of healthcare as a basic human right for all Americans. America did however help build the infrastructure of Europe’s healthcare system. Europe decided after World War II that the most important thing to provide was healthcare for everyone. A healthy society is a productive society in more ways than just a capitalistic standpoint.
For those that still don’t get what I am saying about providing healthcare for all Americans, think of it like this, for every dollar you cut from the NIH, Medicare, Medicaid and refusing to implement a better more proactive system to keep people healthy and living healthy lives, you are making a conscious decision to allow people to die.
I don’t how to say it any plainer.
You reverse the progress with Obamacare, millions of children instantly will be thrown to the streets without insurance. Children with a future, they just need a chance to get past the cancer, the birth defect or the abuse that has been handed to them without their fault. You issue a death sentence to millions of children. You then reverse the progress being made that in 2014 all adult Americans will not be in my position and without insurance because of pre-existing conditions getting you kicked out after anything major happening.
Now things aren’t perfect, the proposed healthcare plan isn’t perfect, but don’t go backwards on good things.
Make the changes to things to make them work better.
And I’ll digress.
Best to everyone, I'll try to get back to writing less depressing stuff if everyone can talk with God for me and ask for at least a break from this for a while if not forever.
#MayGraceFreeYouForever - Andy