There are two times in life when memories of a traumatic event are better. The first one is the hardest one to get through, the point after. After many months or years, our memories of a traumatic event are dampened or even turned around into a positive, optimistic outcome. The second situation or time when a traumatic event is better is right when it happens. This can last for an instant, a few minutes or sometimes even longer. It all depends on how long we take to fully absorb what has happened to us. Sometimes, the gravity and the depth of what has happened will take time for the numbness to wear off and the real painful emotions to set in. Sometimes we push these painful things to the back of our mind so that the numbness will linger as long as possible. The thought of reality, in an instance that is truly painful, is not an easy thing to enter into.
I haven't written in a while. Most people that know me know that when I don't write for a while there is something going on. They know that I am trying to absorb what is going on. I don't just write random entries of what I ate that day or what aches and pains I am having. That is not who I am and that is not what the people around me want to hear. So I have taken some time to write this entry because I was and I am still absorbing the gravity of what the past few weeks have done to me, my future and my family. This time there is no good story to learn. There is no good thing to take home and really learn from. This entry is not for the easy reader. I apologize for the gravity of what I am about to write about.
Last Wednesday, I visited my family doctor Dr. Sellers because I have had increasing complications since my February Remicade infusion. My hands are still swollen and even bigger and more painful. I am having trouble dealing with pains and staying alert. Basically the last Remicade infusion wiped out all the Adderall and Percocet treatment amounts that were keeping me somewhat stable before. I say somewhat stable because I was still on a slow slide down health wise. So I went to Dr. Sellers to adjust everything to become functional and human again. We also wanted to run some tests to see if the Remicade was truly making me have this reaction or if it was just unmasking something else.
There are some simply blood tests to run to see if you have developed antibodies against Remicade and you can also start the 7-day steroid burst to help with the symptoms. So we drew blood and I started on the steroids on Wednesday, March 10th. Wednesday and Thursday were horrible because I was quickly reminded how much my body hates steroids and how it fights them off. I don't get the steroid energy boost that most get. I get these flu-like symptoms as if I were fighting off a major virus. It is because my immune system is so incredibly powerful and so jacked-up that it fights anything and everything in my body.
Friday morning I had just gotten out of my twice a week psychotherapy session when I received a call from Mary. She said, "call Dr. Sellers, he has your test results back". So I called Dr. Sellers and he was with a patient so I left a message. Instead of driving off, I sat there in the parking lot and waited. In my mind, I was playing with the same scenarios that I had played with a hundred times before. Here I am waiting for either really good news that the Remicade is causing all of this and I am going to actually begin to start feeling better by next weekend or I am going to get the worst news that the tests were negative and I have a monster inside that is about to reveal itself. Just when I had reassured myself that it was going to be Remicade serum sickness my phone rang and it was Dr. Sellers. He said, "hey Andy how are you feeling?". I said, "Ok right now because I haven't taken my steroid dose today. When I take that the rest of my day is shot. How are you?". Dr. Sellers said, "I am doing pretty well. Hey listen, we got your test results back and the good news is that you can stop the steroids.” There was a dramatic pause. I said, “That is not good news”. So we continued with a few words but the moment was a little bit frozen and hard to move. So we decided to let it sit so that we could digest the reality of what it meant. What it meant was that my worst fears were coming true. That “it couldn’t happen to me” was happening to me.
Ever since Sunday, March 14th, my neurological symptoms have started escalating at a scary pace. I have fallen twice, my arms, hands, legs and feet all constantly tingle, have swollen soft tissue and have a numb feeling. I am having trouble with memory and terrible problems with nighttime partial seizures and memory loss. Migraines are back and I am just watching my body literally fall apart in front of me. I visited my rheumatologist, Dr. Myerson on Wednesday. He did several tests and has confirmed all that we have feared. The neurological monster is showing its ugly head. We are going to wait a week to see if symptoms continue, escalate or get better. If they get better then I have to make the choice of whether or not to take a stronger stab at this with the Remicade and another drug. If the symptoms persist then I am going in for another spinal tap to see to what degree and to what the causation is for the neurological symptoms. We are not sure what monster that this is. It could be the existing Neuro-Behcet’s blasting forward revealing itself. Or it could be Multiple Sclerosis, ALS, Parkinson’s or something else like Autonomous Neuropathy. I already have peripheral neuropathy. If this continues on, I could have motor and autonomous neuropathy as well. For so long we have been getting test results that were negative or inconclusive. We would be so nervous waiting for results that would always come back negative or inconclusive. On this test, we had already believed that we would get good news even though I suspected that something else was there. We are now getting the tangible evidence of something that we have known was there, feared was there but could never prove it. For so long, I have been thankful that I have not had external evidence of Behcet’s. People would look at me and say “you look good” or “you don’t look sick” for so long. I took this as a complement and a blessing for I have seen so many people suffering inside and out with this disease. The outside part makes your life take on a whole new difficult dimension to deal with.
I am just now absorbing most of this and accepting that my prognosis looks very poor. I have now heard this from three different very smart doctors, two of which are world renown. I am not in denial of this. I have read the evidence and I know that there are no protocols for treating the state that I am in with Behcet’s. So I am falling past that first line of numbness and into the tragedy. It sucks, it is painful and it is something that you don’t even want to talk about. But I am talking about it because I have to cope with this and be strong. I need my friends to help me as well so that I can remain strong. My family is the driving force behind the little energy that I have. I refuse to give up on them and to let this disease win without one hell of a fight. I know the fight will be hard, much harder than it has already been. I worry that Mary and my daughters will have problems watching their husband, their daddy and their best friend go through this. We still need so much in terms of financial support, friends and community that it burdens me. At the same time, I must relinquish all of that to a power greater than my own. I must relinquish everything to a power that has helped me in the toughest times and in the darkest places.
So I will fight. In time, I know that the trauma of this will hopefully begin to fade and so will the memory of what we are going through right now. I will never forget this moment fully, but I will forget the depth of the pain. I will never forget the people that have prayed for us silently, given to us willingly, and I will never forget those that continue to stand with us through this battle. I cannot control the outcome but I feel the hand of God every time I see a friend or neighbor do the little and big things that we need to survive. Right now I am between the lines of the initial numbness and time enough to let the pain fade. It is in between the lines where the story lives. Please move with us as we move through this time and toward the line that ends our pain and doubt and sustains our trust and healing.