Health · Learning · My Blog · Rare Diseases · Transverse Myelitis

The New Normal (long read)

ITransverse Myelitis is an experience that I would not wish on anyone I have truly learned so much in the last two years. I am a better person because of it. I think that TM has really allowed me the time to slow down, stop and look at myself – who I truly am – and decide what aspects of ‘me’ I wish to keep and where I can improve to be the person whom I aspire to become. A person that my daughter will be proud of.  Just like with anything, there are good days and there are bad days. I am still working towards becoming my best self and accepting who I am – the good, the bad and the limitations.

My new normal is a pared down version of my old self. It has more calculated risks and a refined priority list. I am finally settling in to this body and accepting it for what it is. I have become more cautious and aware of my surroundings. I now take the time to appreciate the little moments and savor time with those I love more than ever before. This has allowed me to experience life in a very different manner.

The last few weeks as I have been approaching my “anniversary” or “crapversary” if you will. I have been experiencing a roller coaster of emotions. These emotions are joyous for where I am now in this journey and sorrowful for what I have lost. I have been plagued with dreams that enjoy haunting me this time of year. Not that I don’t experience these things throughout the year, but when November rolls around I find myself thinking back to the start of this portion of my life.

It is just another section or slice of my life:

  • Childhood
  • Pre-Motherhood (high school & college)
  • Motherhood
  • Pre-Transverse Myelitis (‘adulting’, marriage, homeownership, ect.)
  • Post-Transverse Myelitis (11/13/2015-present day)

As of November 13th 2017, it I officially 2 years since I was abruptly introduced to Transverse Myelitis. Let’s start from the beginning…

On Thursday, November 12th, 2015, I was at work with some discomfort and lower back pain. I spent my lunch break taking ibuprofen and icing. By the end of the day I figured that I would have to see the chiropractor in the morning for an adjustment. As the night wore on, my discomfort increased and I went to bed early. As Nick gave me a kiss good night I made a joke about how I hoped I wouldn’t wake up paralyzed since the next day was Friday the 13th. He told me not to joke like that and get some rest. The following morning I woke up feeling okay, not great, but functional.  I got ready for work and Taylor (7 years old) ready for school like any other day. I placed Tay’s breakfast in front of her and stepped into the bathroom to do some deep breathing to work through the lower back pain. Glancing at the clock I made a mental note to call the chiropractor at 8am to see if they could squeeze me in. Once I had collected myself I made my way into the dining room.

In that instant sharp shooting pains radiated from my lower back across my hips and down my legs. I collapsed to the floor writhing in pain. It felt as if my lower extremities were being mauled apart by a bear. After what seemed like an eternity, but was only about seven or eight minutes. I opened my eyes, tears running down my cheeks to see my sweet daughter kneeling next to me with tissues looking terrified. I cannot honestly tell you what came out of my mouth during those few minutes, but from the look on her face a lot had. She rubbed my back and asked if I was okay. I forced a smile and told her I would be alright. At this point I was taking a mental inventory. I wasn’t in excruciating pain like before – I hurt quite a bit, but in comparison it was manageable. I tried to move my legs and sit up. I couldn’t.

Panic rolled through me and my vision clouded over with fear.

All I could think was – DON’T SCARE TAYLOR – you need to get things under control. I calmly asked Taylor to bring me my cell phone and I called my husband at work. I asked him to come home to take me to the doctor. When he asked why I told him that I wasn’t sure what happened, but I couldn’t walk. Maybe I had a pinched nerve or a slipped disk. He was on the way and would arrive within 10 minutes. I then called my work to let them know I would be in late…yeah, that was wishful thinking apologizing for the late notice. I sent a text to a friend who I was supposed to meet and help in the morning apologizing for not being able to make it. Then I set to work reassuring Taylor and having her get ready for school. When Nick arrived I had a fake smile plastered to my face and asked him to take Taylor to school which is a half mile from our house and then hurry back. He didn’t want to leave me, but could tell by my tone that this was not up for discussion. More than anything I did not want to worry her about me not walking or going to the hospital in an ambulance. When he returned he quite literally carried my upper body as my legs dragged on the floor behind us.

Once we were in the car on the way to the hospital I was in tears telling him what happened. He was upset that I didn’t call an ambulance. I honestly hadn’t entertained the idea because I thought I “wasn’t that bad”. However, when we pulled up to the hospital emergency entrance and were whisked past the check-in once they heard my symptoms I began to absorb the severity of the situation. I was looked at by so many doctors within the first 20 minutes of arriving that it was unnerving. Then I was taken away for an MRI. While I was gone Nick was told by the doctor that my condition was going to permanently paralyzed or potentially not make it and to start calling family. When I returned from the test I noticed his visible distress. He gave me a big hug and told me how much he loved me. The doctor walked in with the test results a few minutes later to let us know that the test was negative and was not what he originally thought. The huge sigh of relief and tears from my husband confused me. When the doctor left the room I asked Nick what was going on. He told me what the doctor disclosed while I was out of the room and that he had called all of our family and they were on the way. I felt so terribly that he had to hear those words alone. I was upset that I was not a part of the conversation and that the doctor said that terrible diagnosis prior to seeing the results. Now that we were back in limbo without a clue to what was wrong with me, I had Nick call everyone back to let them know I wasn’t dying, or so we hoped.

I underwent CT scans, MRI’s and blood tests. Many of the tests that were run were hard to watch. One that will never leave my memory is when they put a two and a half-inch needle into my legs and feet to see if I could feel it. I watched in anticipation of pain – holding my breath each time the needle was about to puncture my skin…only to feel nothing. After ten or so hours of testing the neurologist assigned to me decided that a lumbar puncture would give us definitive results if it was Guillain-Barré Syndrome (GBS). After two excruciating attempts of holding still while she tried to insert a long needle into my spinal cord to get a sample of fluid it was unsuccessful. I would have to wait until morning when they could use an x-ray machine while taking the sample. At this point the numbness had progressed up to my navel and lower stomach. My dad asked what the treatment for GBS would be, if the treatment is harmful if I did not have GBS and if it could be administered prior to the test results. The large cost of the treatment was the only negative thing with giving the treatment. We signed an agreement to pay out-of-pocket if the results came back negative. The IVIG treatment was started that night roughly 12 hours after the episode. IVIG is a treatment where other people’s antibodies are  pumped into your body to help your immune system.

I ended up being diagnosed with Transverse Myelitis (TM) which is similar to GBS (http://www.brainandspine.org.uk/transverse-myelitis). This is a rare autoimmune disease, it is like winning a lottery you never entered. It started with a mild cold. When my immune system started attacking the virus it became overzealous and started attacking my peripheral nerves and spinal cord. The IVIG was able to stop the progression from moving further up the spinal cord which would have induce a complete paralysis, including the respiratory system. I ended up spending just over 4 weeks in the hospital. I was hooked up to leg compression machines to help circulate my blood and completed about 4 hours of both physical and occupational therapy each day. 

Many of the medications I received daily were in shot from. They left bruises all over my body and were quite painful to absorb. While in the hospital I learned how to use a wheelchair safely including how to get in and out of bed and into the wheelchair without help. I needed to learn how to do everything over again. Getting dressed, simple hygiene, sitting up on my own, putting on shoes since I can barely wiggle my toes and eventually how to walk. Each and every day was mentally, physically and emotionally draining. Thankfully I truly had a village behind me, motivating me every step of the way.

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I adopted this motto while I was in the hospital and it has stuck with me ever since.

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Part of this motto above really helped motivate me while trying to work through the nerve pain. Nerve pain cannot be treated with standard medication such as ibuprofen or anything like that. I ended up being allergic to the first five medications we tried. I broke out in hives and had various other symptoms. A few of the medications I tried had such terrible side effects – the worst one I experienced was not being able to tell what had actually happened (reality) from what I had thought about (my mental to do list) or dreamed the night before. As a parent and a person who enjoys being a functional adult this medication was not an option. I ended up having to deal with the nerve pain and take muscle relaxers to assist with the discomfort of the muscle rigidity.

In the video below I was finally strong enough to lift my feet off the mat. This took all my strength and concentration. I was only able to complete a few repetitions, but it was highly rewarding. As you will see, my right leg is stronger than my left. This is true in present day also. My left leg and foot are still weaker and less stable than my right side.

I looked forward to my daily visits from my loving husband and sweet little girl. I was very excited that Nick was able to take me outside for the first time  – even though it was chilly it felt so good to not be inside the hospital and I was in a wheelchair.

Here are a few videos of me learning how to walk with the walker. This was near the end of my hospital stay, I was still weak and could not go far or without a spotter, but I still did it. I was entertained by some very enthusiastic helpers! As strange as it is these videos were taken on different days – I know both myself and the physical therapist have on the same outfits in both videos…just an odd coincidence.

I cannot tell you how elated I was to finally get a discharge date. To be home, in my own bed without the hum and beep of machines sounded heavenly. As soon as I had a moment I created a countdown on my room’s whiteboard with a splash of humor.

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Over the course of the last two years I have regained some physical abilities. I was able to progress through multiple walkers and a cane to walking on my own. I have regained almost all of my bowel and bladder functions (so thankful to not have to use a catheter or wear diapers anymore).  There are a handful of things that I have not been able to get back. Sensation below the knees being the greatest loss. I still feel nerve pain – this can range from pins and needles to a burning sensation to the feeling of barbed wire wrapped tightly around my calves. I also have not regained any sense of hunger or fullness. My calf muscles are very weak which prevents me from standing on my tippy toes to reach things or being able to ‘push off’ to  speed walk or run in a normal fashion. The muscle on the left side of my ankle is also very weak. This tends to drive me crazy because I sprain my ankle and have a hard time walking on uneven surfaces.

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Learning how to drive again was an exciting experience. I had my dad take me out into the country just like when I was a teenager. Honestly I was probably more nervous this time around! He decided that I should use his fancy car that has an automatic brake feature where it can sense if an object is too close. Such an awesome safety feature to have. Since I cannot feel my feet I had to the angle and location of my thighs and knees to determine where my feet were. Muscle memory and practice have helped me achieve the correct pressure to use on the gas pedals too. Just in case anyone is nervous or freaking out about this – I was tested by an occupational therapist and had to retake my drivers test (both written and driving) to ensure that I was safe. I passed with flying colors and both proctors were surprised I had any physical limitations since “I look normal”.

Once I left the hospital I continued to do many types of therapy to try to increase my chances of a greater recovery. One technique used was Fluido Therapy. It is basically a large metal box with leg holes in the top. I would insert my legs to my knees and the machine would blow air around 115 degrees and dry cornmeal around inside the machine. It is a sensory technique used to stimulate the nerves in an attempt to wake them up. I also did many contrast baths where I would take two buckets of cold and very warm water and alternate my feet between the two of them. I had to use my hands as my Control so I knew the actual temperature of the water. I would close my eyes and try to convince my feet what the water should feel like. This was important because the cold water felt like ice with sharp needles and the warm water felt scalding. I also used a Transcutaneous Electrical Nerve Stimulation unit (TENS) and Sympathetic Therapy to reduce nerve pain and increase sensitivity. I spent hours and hours every week going to a variety of appointments: physical therapy, neurologist, urologist, psychologist, physicians and rehabilitation doctors. I am finally at the point where I now see the neurologist once a year! So glad to have my time back.

Every day over the last two years has been not only a physical battle, but a mental and emotional one. Many days I have felt like no matter how hard I work or try I am not improving. I get frustrated at not being able to do things that I once could. I also have little patience for how easily I become worn out doing simple activities and the amount of rest it takes me to recover. I have battled with isolation and depression. One of my greatest struggles has been trying to remain strong for everyone else (and myself, kind of) while feeling weak and vulnerable inside. Over the course of my recovery thus far I have had many ups and downs, some which I have shared and others I have kept to myself. TM is tricky because it has allowed me to appear healthy and normal. This is a blessing and a curse. It allows me to pretend to be just like everyone else without constant questions and attention, however, when I need a moment or am struggling sometimes people don’t understand or forget why I am not able to keep up. I have learned to be a better advocate for myself (most of the time); speaking up when there is something I need help with or cannot do. This has been difficult for me because I LOVE helping others, doing everything on my own and pushing myself to capacity. I have begun to work hard on giving myself a break and accepting my new-found limitations. Recently I have been able to be less angry when I see someone doing something I can’t or with the ease I used to possess. I have had to redefine myself. I mourned who I used to be: superwoman, overachiever, runner, thrill seeker and little miss helpful. I had to let some hobbies go and acquire or hone different ones. I still have to be cautious when around people who are sick. I am very susceptible to illness and when I do get sick it hits me harder and longer than most people. I also feel the illness in multiple ways. For example, when I get a head cold it also affects my ability to walk and my endurance.

Not only has my life physically changed, but many of my relationships have changed as well.  For better or worse does not apply solely to marriage. It has really proven to be present in many of my friendships. Some have dwindled and others have strengthened. I am very lucky to have been surrounded by some pretty amazing people. People that I have always loved, but never truly appreciated as much as I should have until now. My husband and I are much closer and have improved our communications skills. Taylor has become stronger, more independent and understanding of people’s limitations. I am hoping she also has learned to not give up when the going gets tough, but only time will tell.

Thank you for taking the time to read this. revisiting and telling my story has proven to be very therapeutic for me.

 

 

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