Back in September I had an upper and lower endoscopy and colonoscopy. I also had my stomach rebuilt, tears between my esphogus repaired and tears /rips throughout my body fixed and multiple biopsies taken.
The surgery revealed severe small fiber neuropathy had spread throughout my internal organs as well as my extremities. Also, it showed paralysis of the esphogus and gi tract.
A little over 2 weeks later and I was back in the hospital for manometry studies of the esphogus system and lungs. The testing was awful. The dr could not get the instruments in correctly. More complications. My body did all it could to remove the cameras from my,nose. I coughed uncontrollably. I swallowed with sheer pain. My,body did all it could to remove it. Fluids came out my eyes, nose and throat while they tried to get as much testing in as possible. The effects caused severe pain and swelling. Rove dudes that should cause my esphogus to dilate caused it to shut off and if it was shut off it opened. Exac opposite of what it should do.
Ding. Ding. No wonder when I sleep I do not get enough oxygen. And it is why I struggle to breathe on my own. I still am waiting on the rest of the test results.
Since the testing on Oct 1st, my,body has not been working as it should. I became severely dehydrTed and my body quit functioning. I was in constant contact with my gi dr. They tried everything. From colonoscopy cleanses to enemas to laxatives. No movement. I couldn't eat and I could go to the bathroom. This went on for over 2 weeks.
I was sent to emergency room by the GI dr. They were afraid of another intestinal blockage. Before we left, Thomas gave me a priesthood blessing. In the blessing I was promised that my Savior would cause the blockage to move.
Still. Unable to stand I went to Banner Baywood hospital. They ran tests. They talked to doctors. The tried guaranteed to work enemas with no luck. They even did the radiology emergency enema done prior to a car wreck victim having surgery. Nothing. No movement. The doctors couldn't get sounds. Nothing. Paralysis. I was paralyzed. Completely. In my intestinal track.
I was ordered ER surgery. GI surgeons were called in. No one would preform surgery on me. They all said I needed a critical care team. So although they were admitting me, switching hospitals became the answers.
After spending almost 12 hours in ER and a miserable night,of poking and proding, they decided to release me. Let me go to my autonomic neurologist appointment. Then I was to check in to Good Samaritan hospital.
My neurologist was not happy he was not contacted. Paralysis of the intestines is part of my neurological condition. Treating the GI track will never work. The paralysis is coming from the brain. Upon further testing, it was determine my entire parasympathetic nervous system was paralyzed. I was given medicine and 48 hours to resolve before they removed my intestines. Oh how I prayed for help.
For four days, each day would get a call asking if I survived and bought myself another day out of surgery. Finally things began to move. Oh I was and am grateful.
The pain was more than I thought I might be able to bear. As the intestines started to heal and start working, the ramifications of the illness continue to cause issues. As I have been so grateful that this issue is resolving, I wish that I could get a small break. But instead, with the parasympathetic nervous system starting up again, the domino effect has hit. Sleeping non-stop. Almost 18 hours a day.
The latest issue.... Kidney stones.
As I lay in the bathtub last night, I wondered if I am just a wimp or if everyone faces this much pain and complications. As I struggled all evening to try to counteract the lastest symptoms, I wanted to cry. The pain so intense. I wondered if it would ever stop.
As I climbed in bed, my dear sweet husband set up the heating pad, put on the Voice, began rubbing my feet. Then he helped put essential oils on my back, feet and abdomen to help ease the pain. He rubbed my hands. He held my hand. He sat with me. He was just there. Hayden then asked how he could help. He took both dogs in his room to sleep. He went and got me a drink. He brought me graham crackers knowing they ease the nausea. He pounded on my back.
I looked at both my husband and son. Yes. I must endure pain. The pain is so intense most days. Some I handle ok. Others, it brings me to my needs. But my dear Father in Heaven provided me with what I need to endure this trial. A loving husband that cares for me. That is more worried about my needs than his own. That will sit by my side and do whatever I need. He gave me a precious son. One who loves his mom with all his heart. He is so caring. So loving. So wonderful. I am so very very grateful for both of them. I am also surrounded in peace by my loving Savior. He wraps His arms around me. He sends his comforter, the Holy Ghost. He surrounds me with friends and family and loved ones.
So although this last month has been a huge struggle. And the pain has taken me to new limits, I am grateful for all that I am given and all that I am blessed with. I am blessed beyond measure. And for all the love and support, my life is good.