Destination Unknown

Good Friday evening, October 12, 2018 @ 21:29:31 MT. My chamber is nearly inflated. I have my right foot elevated. It’s reasonably cool in here. I am enjoying the ice-cold pack against my back. My headaches have been an aggravation this week, especially upon waking up. I feel like my brain is banging up against my forehead or temple or the back of my skull no matter what I do to get comfortable. The numbness in my forehead and both eye sockets lasts all day long. I am masked now and I’m intentionally breathing in the oxygen. I am so glad that we chose the larger vertical chamber. I have plenty of room and it feels like I am in a dome tent. The valve is open to let out pressure as it needs to. The ATA is at 1.3. We are up and running!

I am calling today’s blog Destination Unknown because it really is an unknown when you have a brain injury. I read the autopsy news about that high school football player from the East coast who died recently. He suffered a head trauma that resulted in a sudden cardiac arrest. How terrible for him to lose his life so young! And then there is CTE (Chronic Traumatic Encephalopathy) that we are hearing more about every year mainly in the professional football profession. These are terrible. Please understand that any insult to the brain caused by an external force does result in impairment and deterioration of the brain.

Destination Unknown is exactly what a person faces following TBI. Every thought, mood, movement and every vital body function is directly connected to the brain. I have a condition called neurocardiogenic syncope. I probably have had it for many years. I was diagnosed with it probably in 2008. I was standing at the stove frying taco shells when I got so dizzy that I told Dennis I was going to faint. He assisted me to the floor and I was not doing well recuperating. My heart rate was terribly low. My blood pressure was not normal. My cognition was poor. And I wasn’t snapping out of it like most people do following a syncope episode. The paramedics were called. I was transported to the hospital and sent home hours later with a scheduled appointment with a cardiologist. My cardiologist told me that he was sure of the diagnosis and had me do a simple tilt-table test there in his office. I was assisted by two nurses for the test. Sure enough I fainted and my heart stopped beating, my blood pressure was gone, and I needed to be resuscitated after i was laying completely flat on the table. My cardiologist put me on one daily extended release tablet that I must take daily. I was told that it has to do with the neurological connection between my heart and my brain. It’s faulty for some reason. (Possibly because I have a history of head traumas) He told me that if I ever feel the sudden symptoms of dizziness, my head feeling heavy for my neck to hold it up, if I begin seeing stars, if my heart rate goes down suddenly, etc. that I am to lay down immediately. No matter where I am, I am to lay down. You see, if my heart stops how is it going to start-up again?

Destination Unknown was the typical medical treatment I received for the most part. It was a work comp injury so the waiting and being jerked around by them as they made decisions based on who knows what did nothing but frustrate me. Once my work comp insurance company told me that they would not pay for another medical treatment, I realized that I had to take my life back. And I did. Not knowing much about where to turn or who to reach out to, my quest was a long one but the journey has been worth it. I read books. I listened to YouTube videos. I interviewed providers across the US. I eliminated certain ones who basically did the same things that the medical community tried to help me with here. I kept a file of a few practitioners who seemed to know much better and were advanced in their mindset about “concussion.”

Truly, my Destination Unknown will cost me/us a lot financially. D is currently off work because something is terribly wrong with his lower back.  We are on Social Security. We are not financially set up to handle the expense of this adventure we are taking. We pray and hope and thank and move in the directions that seems right. O, this is tough! But what is the option? There is no other option.

Destination Unknown led me to an endocrinologist in California who knew what he was talking about. He looks at a patient’s biochemistry with a fine tooth comb. He treats each patient as valuable. My primary care physician agreed to consult with him if I would pay up-front a few thousand for all of the labs he would order for her to review. I didn’t have that kind of money and work comp laughed at me when I requested it.

Destination Unknown led me to a fabulous group in Utah that I really hope to visit in the future. They have a week-long program for their patients. The administrator of a FB group I am a member of just completed her week with them. I am looking forward to hearing from her about her treatment. They do progressive and intensive treatment without medication or ointments.

Destination Unknown led me to Dr John Hughes @ TBI Therapy. He has been so thoughtful and has helped us plan for where we are today. He began with us 1.5 years ago as we had phone consults and figured out ways for us to do what we could to get the diagnostics he wanted on me. Then a few months ago we called him and told him that we were ready to purchase this mHBOT chamber and begin daily dives. Dr Hughes is currently my TBI doctor. I have completed nearly 45 dives to date and many of them were for 90 minutes. I know that I am in the 60’s as far as total hours spent in here. I can’t say enough about how glad I am to have this chamber. It has become the most important task I have each day. I do take a day off now and then but for the most part I am very pleased with the improvements that D and I notice.

Destination Unknown is a giant step we have chosen to take with Dr Hughes. We will be driving to one of his clinics in the near future for advanced treatment. It is a pricey (but who can put a price on a person’s health and well-being) three-day intensive treatment that includes hard chamber HBOT, intranasal and iv protein rich plasma and platelet derived stem cells, iv nutrition, cranial fascial release, a ketogenic diet, multiple dietary supplements (that I have already begun to take daily), brain wave training, light therapy, and intranasal insulin. I then will return home with specific instructions for continued self-treatment. Yes, this is intense but I must do it or I will continue to deteriorate and ultimately die. That’s right folks. A brain injury is bad. It leads to all sorts of problems and premature death.

Destination Unknown is the ghost that I face every night as I lay in bed wondering how everything will work out. It’s a battle. It’s about my life. It’s about our marriage. Its about our extended family. It’s about our future. It’s about the here and now. It’s about my worth (I hear those demon voices telling me that my life is spent). It’s about a suddenly beautiful outlook of the future or a death spiral. I struggle. I hope too. I experience a pounding headache or a throbbing pain and I tell myself that I have to press in. I have to stand upright and fight these battles. I strive to be a better wife and mother and daughter and sister and friend…but I can’t if I remain in this limbo-state of hopelessness and a drawn-out limited functioning or motivating existence. If I were an eagle! If I could lift myself up higher than now and see the future that God has for me! If I could dream of pleasant days and nights! If I could communicate with you and not have trouble speaking clearly. If I could walk to the park and watch our grandchildren play or ride their bikes. If I could sit for hours with my youngest granddaughter and teach her to sew. If I could clean my house and even want to spend the day getting my hair cut and my nails done. …… Destination Unknown!

I requested a 90 minute dive since I knew that I had a lot to say this evening. Thank you for listening to my heart. I really want to experience every day God has set for me and love every minute of it too. This dive has been great! I feel rejuvenated every time I come in here. It is my safe place to just be me. Time has ended. The chamber is deflating. My back is relaxed because of the ice. My personal fan has worked well in keeping my neck and chin cool. My water bottle is nearly empty. I have only needed to yawn a few times. All is good. All will work out.

Hugs,

Suz