They are Killing My Son
By Valerie X Armstrong
I remember my precious curly haired baby running toward me with a "boo boo" for me too kiss and make it all better. I still see that innocent baby, in pain, looking toward me now, to help him and take his pain away. Nearly a half a century has passed and whenever I look at my son, I still see him as my baby. I guess that will never change....But, now, despite having done everything I know how to do to help him...I can't.
He was struck down in the prime of his life with Multiple Sclerosis. I'll never forget the day, nearly two decades ago, that my phone rang and he said "Mom, there's something wrong with me. The whole right side of my face has gone numb. Do you think I'm having a stroke?" I dashed home and rushed him to the ER and an MRI was taken. It showed his entire brain and spinal cord covered with lesions. From that point his health declined significantly, to now being quadriplegic and in a wheelchair. Not only that, but as a side effect of the MS he has acquired another neurological disorder called Trigeminal Neuralgia...also known as "The Suicide Disease", because the pain is among the worst known to mankind, causing many of it's sufferers to take their own lives to escape the agony.
His neurologist referred him to a pain clinic nearly seven years ago. He has never missed an appointment, never failed a urine test, has never been anything but kind and respectful to the doctors and staff, however, they are refusing to treat him anymore. He had never taken any kind of pill, with the exception of Tylenol or antibiotics or vitamins before starting at their clinic...The National Pain Institute on Lee Road in Winter Park, Florida. Recently, the doctor there, Dr. Sajan, told my son he wanted him to be seen through a "new pair of eyes", and handed him the name of another pain doctor, Dr. Ramos, which he had scribbled on a torn scrap of paper...I made the appointment for Chris to see Dr. Ramos and after a couple of visits he was told that they would no longer be treating him as he needed long term care which they were not willing to provide. I called Dr. Sajan to make an appointment for Chris to come back there to be seen and they said, they weren't taking him back as a patient. Chris and I were, and still are shocked and baffled by this turn of events. We asked them where we should go for Chris' continued treatment and they casually told us to find someplace in the phone book. Chris was given a thirty day supply of his medications by Dr. Ramos, which are nearly gone.
I have been calling every pain management doctor in a fifty mile radius from our home and none are willing to take him because of the stigma he now has of his previous doctor letting him go. Initially, I was able to make a few appointments with some other doctors but as soon as they found out, on our first visit, that he had been discharged by the others, we were shown the door. Now, when I call around for appointments, I tell them upfront, over the phone, what the story is and they tell me they won't see him. I have run out of places to call and his medicine is rapidly running out.
The last time he went through withdrawals, I had accidentally dropped some of his medication down the sink. He was trying to stick it out until his next doctors visit that was a few days away, but I heard him yelling for me. He was on the floor with his body all contorted, screaming in pain, from what seemed to be a full body "charlie-horse". His having MS causes his withdrawals to be very bad. It causes him to have contractures and seizures, which could be deadly for him. I called 911 and they took him in an ambulance to the emergency room, where they gave him a morphine IV.
This "Opioid Crisis" that is on the news, of late, is causing a big problem for actual pain patients. My son needs his pain meds for the pain itself, plus the fact he is now physically dependent on them. He doesn't take them to get high, but just to be able to exist with the pain that his MS and TN cause him. He has had so much taken from him...His mobility, his job, his friends, his ability to just exist pain-free. He can't shave, barely can eat anything, but Ensure, can hardly speak from pain, and now they are actually trying to kill him by withholding his medication. The Center for Disease control and their new guidelines have made it to where the doctors are throwing the baby out with the bath water...They are trying to stop addicts from overdosing, but killing the other people who actually need the opioids to survive...
I'm not one to subscribe to conspiracy theories, but it does make me wonder if this is a way the powers that be are using to rid society of the disabled and sick people. I'm exhausted and panic stricken from trying to help my son and fearing what the future holds for him...I've cried, I've begged, I've prayed....Now I don't know where to turn. I've never felt so hopeless and alone. Doctors are supposed to help people. He needs palliative care and now! I'd give anything to be able to trade places with him and take his pain away. I'd much rather have it than to see him suffer. He's still my curly haired baby and I will do anything within my power to make it all better for him. Please, God, help us.
