The year 2015 was definitely a challenge for me. It was a year I would never have imagined in my wildest dreams or worst nightmares. I had back surgery at Laser Spine Institute in Tampa, FL in February 2015. I recovered well and felt wonderful for the first time in 40 years. Chronic pain can be so debilitating both physically and mentally. I had just come to think that living with pain was "normal" and did not realize how abnormal it was until I did not hurt so much. So I had a short while of wonderful living.
All changed on Thursday evening, July 30. I ate supper as usual, then around 8:30pm started to have abdominal pain. I actually did manage to go to sleep, but awoke at 10:30pm with severe pain and nausea. My husband was working out of town, and our son had just gotten home from work. He offered to take me to the hospital, but I told him it was just what I had for supper. I felt all would be better with stomach medicine for I thought my pain was gas pains related to the beans I had eaten for supper. The nausea should have been a clue. My symptoms did not improve, they actually became worse. Seems, as everything is worse at night, in the dark, when you are trying to be still so you will not wake anyone.
The next morning I asked my son to go to the grocery store to get popsicles and jello. I thought, I will have clear liquids today and I will improve. Foolish me. By 10am, I could barely walk across the floor to the bathroom. The effort made me break out in a cold sweat while heaving my guts up - adequate description - I am sorry if it’s not pretty. Finally, I did the right thing and called 911, for I had told my son to go into work (an hour's drive away). The EMS came. I looked affright but I didn't care because I felt so bad. I had managed to corral the dogs in the bedroom, for they are very lively greeters. I asked the EMS to be sure and open the bedroom door so the dogs could get out. The young man was so kind. He said he had dogs. They all were big, strong angels sent from heaven. Of course the fire truck first responders and ambulance brought out all my concerned neighbors. I have never enjoyed being in the spotlight, but at that moment I didn't care because I felt so bad.
Off to the hospital we go. I always thought, if and when a situation arose such as this, I would be at the hospital where I worked for 30 years and knew everyone, not 600 miles away from all my familiar colleagues, and without my husband, too. Within an extremely short while after arriving at the hospital, I was being prepped for surgery as we awaited my CT scan results. Sometime during this short time, my husband called to check on me, for our son had called him. I had told him not to inform his Dad so as not want to disturb either of their work. I was so glad my husband called - SO GLAD! I kept thinking to myself, how can this be? I do not know these people. How can this be happening? My CT results were negative. Nothing abnormal showed, but my white blood count was 29,000 - very high - indicative of significant infection - but nothing showed on the imaging. The doctors thought I had appendicitis from my symptoms and location of pain but nothing showed. Due to significantly elevated white blood cell count, treatment was started of IV fluids, IV antibiotics, IV antiemetic's, IV everything and nothing by mouth. This was on Friday, July 31.
In a short while, my son arrived and my husband was making arrangements with his work to catch the earliest flight from Oklahoma. He had committed to a six-week work stint there. In the meantime, he made arrangements for my sister to fly in Friday night, and he arrived on Saturday (soooo glad to see him). By Sunday, I was feeling better and started on clear liquids. By Monday, August 3, at noon, I was discharged home. I felt good Monday morning, able to eat and was putting my makeup on when the surgeon came in to see me. Obviously, time to be discharged on oral medication. THE CALM BEFORE THE STORM!!!
Monday evening, on our way home from taking my sister to the airport, I felt a touch of queasiness and felt like I was beginning to get the flu - not good. My husband wanted to take me back to the hospital - stupid me said no. I went to see my primary care doctor on Tuesday, August 4, who ordered blood work. Went for blood work, stopped and got juice, etc. (my husband went in and got while I sat in the car with my head in my hands). Once I got home, I went to bed. In a short while, I tried to take my medicine and it came back up. My husband did not give me a choice. He said we were going to the hospital whether I wanted to or not.
This time the CT scan showed a "raging pelvic abscess" the surgeon said probably "had been cooking," which is why it did not show the first time. I believe him, for have a copy of the written report. He had more than one radiologist review it. All the IV meds started again and a nasogastric tube was placed. This tube was the worst “ugh” ever!!! In addition to everything else, I had this tube in the back of my throat making me feel as if I was choking or fearing I was going to choke. To say I was not a cooperative patient is the understatement of the year. I was in pure misery. Finally, in the wee hours of the morning, my very sweet, competent nurse was able to persuade the doctor on duty to give me additional nausea medication that helped settle me enough to go to sleep.
The next morning, Wednesday, August 5, the surgeon discontinued the NG tube and allowed a clear liquid diet. I could not eat. I had absolutely no appetite. A CT guided drain was placed. This sounds like a simple procedure, but is not. Horrible looking infection drained out - awful - but I still did not improve. An infectious disease physician was consulted to clarify the appropriate antibiotics and on his visit Thursday, August 6, gentamicin was ordered for a course of 14 days. All blood work results, to check gentamicin levels in my blood, proved to be normal. Follow-up CT performed on Friday showed improvement in the abscess but I did not feel better. By Monday I told my surgeon I felt like I had a triple case of the flu, which leads to more imaging and consulting, resulting in the decision to go to surgery on Tuesday, August 11.
My surgeon reported that I was "a mess," with the end result of Oscar, my temporary colostomy. I named my colostomy, Oscar, for this helped me to cope better. I had a hard time “wrapping my mind around" having a colostomy. It was difficult for me to say the word, colostomy, much less say I had one, so I just talked about Oscar. After a total of 20 days in the hospital and 12 pounds lighter, I was discharged home on Thursday, August 20th.
Oscar and I finally got to go home. I have to say I had to “stand my ground” to go home. The experts recommendation was to go to rehab to regain strength and learn to cope with Oscar. I was not doing this regardless of what family or experts said. I was going home – period - end of discussion. I bargained and said I would go home with home health and would make arrangements for my Sunday school friends to stay with me on two days when my husband and son would be away working. Finally all agreed, including me. I will be forever grateful to my family, including my sister and my Sunday school family, for making it possible for me to go home rather than to rehab.
My husband or my son was with me all the time in the hospital. The nurses said my husband should receive the "Husband of the Year Award" especially with the first shower he helped me to have with all the tubes everywhere. My hair had not been washed in 5 days. I knew I would be a new woman if I could just have a hot shower. The doctor allowed it but all the tubes had to be protected. The nurses and my husband did a wonderful job protecting all. He did deserve the "Husband of the Year Award" and our son deserved the "Son of the Year Award." They were with me every bittersweet step of the way, enabling the sweet to overcome the bitter.
I will never forget the healthcare professionals who cared for me all those days. Most were young enough to be my children, but they practiced with very seasoned skills. Their kindness and compassion combined with their seasoned professional skills made for a truly awesome combination. All were a true asset to their professions.
I was discharged on Thursday, August 20 with Oscar, my temporary colostomy and several meds. On Monday, August 24, I woke being what I called very dizzy. I staggered when I tried to walk and had to hold onto furniture, walls, anything I could put my hands on. My vision was like I was seeing everything all the while seeing nothing. Everywhere I looked everything moved. All was awful!
My home health nurse and physical therapist came. Their opinion was that the dizziness was related to the stress of surgery, loss of weight, and general run down condition post operatively. The physical therapist tried the maneuvers to reposition "the crystals" in my ears without success. On Tuesday, August 25, I went to the ER because of the dizziness. I had all the imaging to rule out brain tumor, stroke, etc. All came back within normal limits. I was sent home with a prescription for meclizine, a medicine for dizziness. It did not help. My first post op visit to the surgeon’s office one week after discharge, he suggested I decrease and wean off all meds for pain and mood stabilization. I did this within 5 days following the visit to his office. It didn't help. The physical therapist wanted to bring me a walker. My husband says I refused. I do not remember saying that, but I am sure I did. I kept a log of my eating, drinking, medication taken, weight, wobbly walking, elimination - anything I did. I felt like I was totally out of control and documenting all these different tasks made me feel in control - doing something for myself - all the while getting used to Oscar, teetering with every step and trying to put on a "strong face for my family.”
I finally got my appetite back and started to gain some weight back. I would go walking outdoors with my family or the physical therapist. Feeling the sun on my face, the breeze blowing, was the best medicine, but I had to hold onto whoever was with me. I did not dare venture outside alone. I did not dare to drive, and silently, fearfully wondered if I would ever be able to again. My husband and son coordinated their schedules very well to chauffeur me to all my doctor's appointments, wherever I went, and I did not go out much. I felt my world was so small, so changed. As the days went by I grew stronger and my coping with Oscar improved. Finally, after 8 weeks, the physical therapist signed off. My home health nurse continued to come because of Oscar.
Once the physical therapist signed off, I requested to be referred to an ENT doctor. Finally, I thought someone would be able to help me. I had been researching dizziness and had found that gentamicin can be ototoxic. The ENT doctor asked me if I had been on a cruise. I said no. He asked if I had had any antibiotics. I told him about my hospital stay and meds. He immediately said I had gentamicin induced vestibular damage and prescribed vestibular therapy. I had to go back for the VNG testing which confirmed his diagnosis. When I asked the prognosis, he said maybe in a couple years I would see improvement. My brain had to learn to compensate. All was bittersweet, once again. I was grateful for, but devastated with, the diagnosis.
My sister suggested I try a rolling walker to enable more independence from my family. In October when I turned 60 years old my husband bought me a rolling walker. I still had my temporary colostomy. As I strolled my street with Wally, my rolling walker, for the first time independently alone, I cried my heart out. A young neighbor came by, stopped and asked me how I was doing. There I was with tears streaming down my face with my tale of woe and he says, I will never forget it, he says "but you are out in the sunshine and fresh air. That will make you feel better." What made me feel better was being in the sunshine and fresh air without holding onto to someone's arm. As much as I did not like Wally, my rolling walker, I soon came to love him. My confidence grew.
My physical therapist came back to help me with the vestibular therapy. Once again, I kept my log. My log of standing in the corner on pillows doing my head exercises, often singing hymns. I was bound and determined to get better. After 2 weeks, the physical therapist signed off as well as the nurse. I could stand in the corner on cushions for 30 seconds without losing my balance, falling into the wall, and that was counted as success. That was not success to me!! Success was to be normal again - to be like I once was - to be without the wobbles. I continued to document my exercises of standing in the corner doing my head rotations until the end of February 2016. I had started them in October 2015. Four months should have been plenty of time to be successful, but I still had the wobbles. Granted, I was able to stand in the corner for 10 minutes on cushions doing my head exercise before I lost my balance. Yes, that was success from 30 seconds to 10 minutes but success to me was to be wobble free and I was not wobble free. Some success, to me, was eventually being able to trade Wally in for a cane, which made me feel less of a “sick person.” I now walked with Candy, my cane.
Oscar went back to his natural home on Wednesday, December 9, 2015. My hospital stay was uneventful, but four days after discharge, I was readmitted due to a post op ileus. All those frightful symptoms of nausea and pain were back. I had made up my mind if the doctor recommended an NG tube, I was going to out and out refuse, but thanks to our Heavenly Father, I did not have to have this concern. Once again, I was cared for by some of the same wonderful nurses I had previously. They remembered me as I remembered them. They, as did my family, put the sweet in this bittersweet situation. I got to come home on Christmas Eve. I have to say, Christmas 2015 was the best Christmas I can ever remember. I was alive and savoring every moment with my husband, son, dogs and cat. I was relishing in being home, sitting on my couch with the ones I loved most. WOW! How did I live through two hospital stays in 14 days or three hospital stays in four months? I know beyond a shadow of a doubt I was alive only from grace, the unmerited favor, bestowed on me by our Heavenly Father. Thank you seems so small, so inadequate, for the blessing of life, but that is all I knew to say.
At the end of February 2016, I decided to seek a second opinion. I told my husband that if I was no different by May, I was going to contact the Mayo Clinic in Jacksonville, FL. He said, why wait, why not now? I thought – well why not now? On March 17, 2016, we went to Mayo Clinic for a second opinion about my wobbles. The doctor there was wonderful - so kind and compassionate. I will never forget him. After a full day of testing, he told me my wobbles were permanent and this was my “new normal.” When he told us this, I cried. We all cried - my husband, the doctor, and me. He told me within this "new normal" it would be my choice as to how far I pushed my "activity envelope." He said he had some patients that only went from the couch to the table, but he had one patient with the wobbles that played tennis. Yes, he had fallen several times playing tennis but he had not given up. I knew for my family's sake as well as my own, I had to make every effort to do more than go from the couch to the table and back.
The doctor at Mayo Clinic felt I had reached my maximum potential with the vestibular therapy and suggested Tai Chi and trekking poles to use with walking, one in each hand. He explained the importance of keeping my legs, ankles, back, and the rest of my body strong to prevent falling. The trekking poles are wonderful. They helped me to have a better walking posture than I did with my cane.
I have pushed myself as much as physically and safely possible. I have worked in my flower garden by crawling around on my hands and knees. Crawling is not easy but easier than walking on the uneven ground and bending over. I describe the sensation in my head as being like the bobbing of the bobble headed dogs that people used to put in their car’s back window, and it feels very heavy when I am down on my hands and knees, as heavy as a cinderblock. The heaviness does not seem as bad when standing. I have painted the walls in a bedroom by connecting an extension pole to my paint roller. I have to admit, this was my biggest challenge thus far. The fatigue that occurred came much quicker than I could have imagined, making my painting project last for several days. What I would have done in three days before the wobbles actually took me three weeks with the wobbles. The fatigue was overwhelming. I actually sat on the floor and painted on the walls. But I was determined to get the project completed and I did. I felt good about the results, although that project and lying on the couch was all I did for those three weeks.
I have resumed the chore of cleaning our pool. I had taken this over from our son after my back surgery. Well, once the wobbles happened, I thought, now how am I going to clean the pool without falling in and drowning? I am not much of a swimmer. We didn't purchase our house because of the pool. The pool came with the house. We would have liked the house just fine without it, but we have it therefore it must be cared for. Anyway, my mind worked well enough to make me think to buy a life jacket. So I resumed this chore by wearing my life jacket. Granted it is not easy, but nothing is easy anymore, is it? I have been determined to do more than go from couch to table. These are the biggest task I have accomplished.
The first time I drove with the wobbles was in November 2015, after not driving since July 2015. During these four months I silently and fearfully questioned if I would ever drive again. My physical therapist told me I would know when it was time to try. My first driving was a 5-minute drive with my husband through our neighborhood. I asked my husband if he was feeling brave that afternoon. He stated yes, so off we went. I have to say, I sat like a statue not daring to move my head. As I said, was a very short drive. Our church is 3 miles away and that was my next destination. I managed that during daylight hours only. My hair stylist is 5 miles away and the grocery store 2 miles. This was the extent of my driving until September 2016, almost a year later, when I drove to the nearest airport, approximately 30 miles from our house. I did not drive on the interstate. I took the long route and stayed in the slow lane with my head stabilized with the headrest. The trip to the airport boosted my confidence so much. I have found I feel safer if I stabilize my head against my headrest. My vision is better this way - not perfect - but better. Please do not think I am out "burning up the roads." Making a conscious effort to keep my head against the headrest is very tiring, therefore long distance driving is not an option. My husband has worked on the headrests in our vehicles making them softer and easier to adjust. The stability of using the headrest tends to lessen my bouncing vision, making me feel safer while driving.
I find darkness is very challenging, especially outside. I can maneuver in the house fairly well at night because we have night-lights everywhere, but outside is just not an option, even with my trekking poles. I have driven alone, the three miles from church, in the dark without significant fea,r but will not attempt further distance. We live in a climate and neighborhood that would make evening walks so inviting and this was when we did much of our walking prior to the wobbles. Not now. Walking is done during daylight hours. Just another wobble adjustment and it is doable. Driving only short distances in the dark is another wobbles adjustment. Knowing I no longer have the freedom to get in my car, go anywhere at any time is a VERY BIG wobbles adjustment.
At times, I have felt as if I am losing my mind when I cannot concentrate and focus as I once did, especially when I am very fatigued. I am referring to being beyond tired, when every action becomes more of an effort than I have to give. I remember the doctor at Mayo Clinic telling me the reasoning and thinking centers of my brain were no longer functioning at 100 percent. He told me they are helping to compensate to keep me upright since my damaged vestibular system can no longer do this. When I try to have what I would call a “normal” day like I used to have, which means I push myself to do “just a little more,” I find the next day or two or three are rest days, sadly to say, “couch days,” which I never wanted to have. Another wobbles adjustment.
To have what appears to be rational thinking and reasoning, the rest days are a necessity. When fatigued, I find I cannot get my words out properly, form my sentences and have significant wobbling when walking. I have to rest. Each day, from noon to 2pm, I have what I call “my siesta”. I rest enabling me to finish my day in a somewhat “normal” fashion. I do not travel as well, especially flying, but my husband works in the airline industry, so he makes my efforts to travel easier than would be otherwise. When flying, I cope by not flying alone. I wait to be the last off the plane and walk down the jet way with my trekking pole in my right hand and my husband’s hand in my left hand. I have tried walking down the jet way with just my trekking pole not holding my husband’s hand and I literally “bounce off the wall”. Wherever we go, I rest for half a day, each day. I may have a slow morning before going out or have an afternoon in. Another wobbles adjustment.
Explaining vestibular damage to someone is not an easy task. Our vestibular system is made of the semi-circular canals found in the inner ear. These canals are filled with fluid. When the fluid moves it touches hair cells, which send messages to the brain. Then the brain tells our eyes, muscles in our legs, ankles, feet, back, and neck what to do. The antibiotic, gentamicin, had destroyed my hair cells in both ears, leaving me with bilateral vestibular damage. My hair cells will not regenerate, will not grow back, and will not improve. I find most folks can understand better when I ask them if they ever jumped on the bed as a child. Then I ask them to try to visualize jumping on the bed while taking a shower, writing a letter, washing dishes, vacuuming, mopping, shopping for groceries, putting gas in your car, putting groceries away, working in your yard, taking a walk, balancing your checkbook, pulling weeds, planting flowers, ironing, brushing your teeth, walking your dog, dancing, washing your car, carrying a baby while walking, bending over - to pick up something out of the floor, to pick a flower, to pick up a seashell, going up and down stairs, turning your head to look at the words when typing a document, any and all movements. At times, I feel like the “light bulb” lights up for them, but I know it realistically cannot unless they have vestibular damage, and I would never wish vestibular damage even on my worst enemy.
Sadly, my back pain has worsened with the wobbles. My left lower back pain is less than the right due to the surgery performed at Laser Spine Institute. The chronic burning pain in my right lower back often intensifies to the point that I feel as if a knife is being twisted into it. The doctors tell me I have degenerative disc disease with scoliosis. I just know the pain is saying, “I’m back!!!” – no pun intended!! To me, the misery of the wobbles should be enough for a lifetime, but obviously not for me. I feel our Heavenly Father is certainly refining me for something big because the wobbles gives my back a most strenuous workout, making “my siesta” time even more important. I try to think of it as just another wobbles adjustment.
Learning to adjust to my “new normal” has not come easy. I am into my second year of wobbling. I feel overwhelmed at times and I sometimes wonder how I am going to continue to live this way.
In learning to cope, I have sought professional counseling. In visiting with my counselor, I have come to realize that I can make my small world smaller by wanting the “normal” I once had. My “old normal” is gone. I have struggled with being unable to return to work. I worked for over 30 years in the healthcare industry as a registered dietitian nutritionist. I provided medical nutrition therapy by using critical thinking skills and “running the halls” to ensure completion of my daily patient load assignment. With the wobbles, my productivity is affected. My inability to move quickly for “running the halls” is not in my “new normal.” My reasoning and thinking centers functioning less than 100% enables me to stay upright, but affects my critical thinking skills. As a wobbler, my ability to be 100% productive at any task is diminished. Ethically, to provide medical nutrition therapy would be legal suicide for me. In my three hospital stays, I expected all healthcare workers to be able to provide the care I needed at 100% of their abilities. I would not have accepted any less as a patient, and I would not give any less as a healthcare professional.
With the help of my counselor, I have come to realize my career of 30+ years did not define who I am. I am still loyal, dependable, trustworthy, dedicated, honest, etc. – a girl scout for sure!! I would like to think the wobbles have helped me to become more compassionate, kinder, and to better see beyond “the differences” to see the person, as I would want to be seen. I want my wobbles and walking stick to enhance who I am, not become who I am. Being grateful for the wobbles is still a learning process for me. Some days I can say I am grateful for my “new normal” small world and other days, I have to say, my attitude is just the opposite. I am continuing to work on making my small world big. I am continuing to work at making my “new normal” the very best. I have to for my family, but most of all, for myself. Almost daily, I write a list of ten blessings I have. Blessings such as life itself, family, friends, my church, mobility, trekking poles, eyesight, strong legs, sunshine, colors, creation, my dog and cat, and so many more. My “new normal” includes activities I may not have considered in my “old normal.” I have learned to make bead bracelets, do simple sewing, and to make cards. I have learned to look at all I do in a different way, the wobbly way, the safe way.
In my opinion, no one wants to appear different. We all want to be normal, to be accepted, to blend in, to be like everyone else. Wobblers are “normal,” not different, until we move. Life is made to move. We are made to move. I am made to move. Our damaged balance can be seen when we move, making us different. Our Heavenly Father made us so intricately that I am awed each time I read about the human vestibular system – the working together of the inner ear with our eyes, our muscles, all connected by our brain.
THIS IS NOT THE END.
THIS IS THE BEGINNING.
Afterward: Betty Cress participated in a clinical trial at Johns Hopkins and received a multi-channel vestibular implant. She still requires support to walk, but her recovery is proceeding, and she has hope again.
To Anna Jean Mallinson, my fellow – wobbler and author of Terra Infirma A Life Unbalanced. Her encouragement has helped me to gather my thoughts on paper.
But Most of All to my husband, Eddie, for steadfastly holding my hand with his heart in my “new normal”.