More testing

I spent Wednesday, September 4th at Mayo Clinic repeating all of the ARS, Autonomic Response Systems and Sympathetic and Parasympathetic testing. 

Oh how I do not look forward to these tests. Especially the tilt table test portion. But, it is a way to find out answers, so I willingly underwent being hooked up, poked, burned and prodded at. This is the third time I have had this exact series of tests. So I knew what I was in for and a little bit of about what to expect. However, this was definitely the most difficult time I had enduring and completing the tests. 

Basically, they put your body thru a string of tests that should all stimulate the autonomic system. They test all of your automatic responses that you cannot control but occur automatically within your body such as; sweating, breathing, heart rate, blood pressure and whether or not your body passes out due to not being able to control the variables. During the breathing part, I was not able to follow nor hold my breathing and I required a lot of breaks. When the tilt table portion began, I felt like my skull would explode. I get the same feelings right before I pass out or have seizures occur. I had to have help up and out due to being so sick and wobbly. 

I am not sure of results yet, but am still dealing with the stresses and side effects of the testing. My poor body hurts to move, even the slightest jarring and I want to cry out in pain. With all of my nerves being stimulated, they are highly sensitive today. The pain is deeper and almost more than I can bear. Tears flow much easier and more frequently as the normal pain with this disease substantially multiplies and creates almost unbearable and constant pain. I sleep frequently but in short increments due to the pain awaking me. 

All of the autonomic processes that are effected by this disease are exaggerated and more intensified. Needless to say, it has been an extremely long week. 

I have not yet received the official results which will determine the game plan to trying to take back my health. However, one of the neurologists at Mayo Clinic met with Thomas and I, while I was there. (Thank heavens that Thomas' boss is amazing and he can get off at a moment's notice when needed.) I have had a lot of "rough" discussions with doctors about the reality of my disease and circumstances. For some reason, this doctor seemed to have said things in a way that I understood the grimness of my situation. 

The doctor walked in, asked questions and then proceeded into explanations. She said that my diagnosis had not changed, but had been long enough that they can officially diagnose me. I absolutely have Autonomic Orthostatic Hypotension Neuropathy. And, I am in Autonomic Failure. I was down graded or upgraded to a worse form of the disease. It is listed as a rare disease that takes a great length of time to diagnose and rule out other possible diseases and complications. 

During our discussion, she was real and did not sugar coat anything. She gave me the cold hard facts about what I am dealing with and the terrible odds of surviving or thriving with this disease. 

She said, to quote her, "This disease is hell. It is rough, it is debilitating. It is almost impossible to survive. There is no chance of beating it or having it go away. The odds of even controlling the disease to which some form of a normal life is possible, is less than 5%. In Arizona, there isn't even a slim chance at beating this." She reiterated those points over and over. 

She added that although she admired my determination, that is is killing me. I am doing too much. And my body is suffering each time I try to force it to comply. I am living with a new set of circumstances and need to grip what that now entails. 

She said she admired my trying to go for a short walk or do small exercises but my body cannot handle them. My goal. Is in the next month to be able to go sixty seconds. Yes seconds. Or 1 minute on the small ground pedal unit without passing out or bringing on excruciating presyncopal symptoms. Then I will begin to lift one pound weights. One pound. As I heard that, for some reason, those were some of the points that made me understand the severity of my situation. 

I was given a list of do's and don'ts to strictly follow. 

Do NOT:

Stand or walk outside of going to the restroom. 

Stand for 2 hours after eating. 

Go outside for any reason, except doctors, until it is below 90 degrees. 

Exercise. 

Sit with my feet on the ground with my head being sustained by me. 

Stand. 

Do: 

Eat six meals a day and stay seated for two hours after each meal. 

Stay indoors with the ac on and blinds closed. 

Get a small pedal machine and work up to one minute without passing out. One minute. 

Wear compression stockings 24/7

Intake as much salt as possible. 

Drink pedialyte. 

Sleep more often. 

My body does not have enough blood/oxygen. It cannot keep it in my head due to this disease. The sensors in my neck are malfunctioning. Blood is pulling in my legs. Because of this, with blood and oxygen deficiencies in my head, multiple side effects are occurring. Vision loss, neuropathy in feet and hands, excruciating head pain and pressure, seizures, passing out, living in a pre-syncope phase, digestion effected, organs shutting down to require less blood to areas, etc. etc. 

Needless to say, although I really really like the doctor herself, it was a hard conversation to take place. I felt the reality of the situation ahead of me. There was over an hour worth of discussions. 

I left not knowing what to do. Sure. I will follow her guidance and suggestions. But the deep down what do we do feelings? Has not subsided. I am anxious for the head doctor to call this week. I am ready to hear about the tests, procedures, opportunities and any positive glimpse to grasp onto. 

Diagnosis looks grim. My future not what I had planned. I am trying to be positive and feeling gratitude that I am alive. Even if confined to my home. 

I believe the best thing that came out of this conversation and appointment is how I feel about me. It is very hard to not beat myself up. Ask if I really am giving my all. Is there anything else I could be doing. I have questioned myself so much. So to hear that I was over doing it, in its own way, helped. The doctor reassured me that autonomic system is just that. It is autonomic. I do not have one ounce of control over it. I am doing all I can. That is why I am still alive. So I have taken a deep breathe and have decided to be easier on me. I know I am giving this my all. I know that if I was told to stand on my head all day, every day, and I could get better, I would immediately stand on my head. Oh how I long for some sense of normalcy back. 

I am so grateful for those that have loved me, supported me, cherished me and encouraged me. It has been a long road. I am so appreciative of all the support and love. 

Somehow. Someway. I know that our dear Savior will point me to the path that will let me have the best life I can. I do love all the tender mercies that are poured down upon me each and every day. It  makes all the difference in the world knowing he walks with me. He comforts me when I am down. He strengthens and teaches me daily. And when I can no longer bear the physical demands and excruciating pain my body is in, I call on my Savior. He picks me up and carries me to my place where I can again function, think, and bear the burdens placed on my back.  What a loving friend, comforter and Savior to care about me, Jerlyn. He walks with me. This I know. I have felt his presence. I have felt when the strength is no longer mine but his. I have felt him wrap his loving arms around me and reassure me that I am not alone. I may be weak but he is strong. I love him and I know he loves me. 

Prayers are appreciated. They are needed. I will keep updates coming as we are in a daily regimine to fight this illness. Please know of my gratitude for the support offered to me and my family. It is times like these when I am in awe at those that care and love and serve. I definitely get to benefit from all the goodness in people. I have been surrounded. Buoyed up. And loved by so many. Words do not justify my gratitude and love. Thank you. Thank you. Thank you for walking this journey with me and sacrificing for me. It means so much.