The Girl Behind The Blog: Part 6

The following post is part of The Girl Behind The Blog series that details my story of illness and recovery starting in March of 2007. I believe that God created me for a reason and each experience I have can draw me closer to HIM and be used to encourage others. This post and those that follow in the series detail a pivotal moment in my life that changed me forever.

If you are just joining the story you can read the previous posts: Part 1Part 2Part 3Part  and Part 5.

Here it is my final installment in this series, for now anyway. Like I mentioned in my post yesterday I could still write about this FOREVER! At a later date I may revisit this topic again or write a book, who knows :). Sharing my story this past month has caused me to relive all the emotions that overwhelmed and consumed my mind and body, it has been extremely therapeutic and well worth the time the energy. Thank you for those who read and encouraged me to continue sharing.

Once diagnosed with Guillain–Barré Syndrome, my new mission became to learn everything I could about what had invaded my body. I researched, took notes, and reached out to others online. Even though there were few and far between articles on my exact diagnoses I gleaned knowledge from books on the immune and nervous system and how a nutrient rich diet can combat inflammatory diseases. I stumbled upon a book by a fellow believer, Jordan Rubin that changed the way I ate and looked at food. The Makers Diet was an eye opening read. I began implementing all aspects of this program. I bought supplements, read another book about juicing and bought a juicer. Every ounce of energy that was still left in me I poured into practically applying all this new information.  I had nothing to lose and only everything to regain. I was a woman on a mission.

Not only did I change my diet but I also added in weekly massage and chiropractic treatments. One of the books I had checked out from the library mentioned that the combination of these therapies might be useful in cases of inflammatory  and neurological diseases. Physical therapy came next. My balance, strength, and coordination were so far gone. I began with the basics – bridge pose, bicep curls with 2 pound weights, rows with resistances bands, and working on my transitions like moving from sitting in a chair to standing.

In addition to my biblical based diet, juicing, chiropractor/massage appointments, and physical therapy, I implemented two more items to my self made recovery plan: water exercises and yoga. From late spring until early fall I was in the pool daily walking and stretching my arms and legs. I would have two pool noodles with me and would push them across the top of the water for very minor resistance training. The noodles also made my parents feel better to know I had two easily accessible floatation devices near me in case I became overly tired. Once the weather became cooler I began a gentle yoga practice at home. I checked out yoga DVD’s from the library and would rotate through their selection every two weeks. I could barely balance but I did what I could and over several months began to see improvement.

With this combination of medication, treatments, and my self subscribed recovery plan I slowly started to emerge from the cocoon I had been living in. Gradually my neurologist started to taper my medication, which was painful and challenging in itself. I wrote out bible verses on notecards and taped them all over the house. When I needed encouragement it was easy to glance around and read the scripture on the walls. I loved reading 1 Peter 1:7.”These trials are only to test your faith, to show that it is strong and pure. It is being tested as fire tests and purifies gold — and your faith is far more precious to God than mere gold. So if your faith remains strong after being tried by fiery trials, it will bring you much praise and glory and honor on the day when Jesus Christ is revealed to the whole world.”

There is so many amazing things that I learned from my illness. Each situation in our lives can be used to either make us better or bitter. I was definitely bitter at times but once I made up my mind to make the best of my circumstance my attitude and outlook on life started to slowly brighten.

It took me many months after I experienced my initial symptoms to start to see the bigger picture and realize how amazing God had been to provide for my needs. Yes, I was blessed, because if I hadn’t had insurance or been given referrals for my neurologists things would have been so much worse. Years later I still get goosebumps thinking about how God provided for and looked after me during my illness and recovery.

In March of 2007 I had been with my job for 1 full year. This made me eligible for not only short term disability coverage, (a benefit I had added to my medical plan a year earlier on a whim), but also for COBRA benefits which provided protection by being able to keep my medical insurance from my employer in the event I was unable to work.

COBRA (Consolidated Omnibus Budget Reconciliation Act), in case you have never heard of this term before, is a government program that gives workers and their families who lose their health benefits the right to choose to continue group health benefits provided by their group health plan for limited periods of time under certain circumstances such as voluntary or involuntary job loss, reduction in the hours worked, transition between jobs, death, divorce, and other life events. Thankfully after my short term disability ended from my employer I was still able to keep my insurance, for a price. Just as things were starting to get tight financially my Great Aunt Mary Ellen mailed me a check to cover my entire monthly premium of $475. She did that every month until I was covered under Josh’s insurance.

IMG_1040

Great Aunt Mary Ellen

If you are just entering your career or have the option to update your benefits through your employer I urge you to add short term disability coverage. It is well worth the minor pre tax deduction each month from your salary. Trust me. I was healthy, fit, and had just graduated from college. I never thought I would need, or ever use that coverage, but for some reason I added it to my benefit plan. I am so thankful I did.

The neuromuscular specialist who became my primary neurologist was named the top doctor in Phoenix for 2005, 2006, and 2007. He also worked alongside another neurologist who served on the medical advisory board for the GBS/CIDP Foundation International. This foundation became instrumental in providing me and my family with knowledge about my diagnoses. It was inspiring to read the newsletters with the survivor stories and know that people, who were as sick and even sicker then I was currently, had made a full recovery.

The best thing I learned is that I need to be my own advocate. I know my body better than anyone else. I knew something did not feel right. I pursued and became relentless on my quest to discover what was causing my symptoms. I didn’t back down or give up, though at times I felt utterly hopeless.

As a Christian I believe that God has a plan and purpose for my life. I know that everything, this includes the good and the bad in my life, can be used to glorify God. If you are going through a challenging valley in your life I want to encourage you. God is not done with you yet. Jeremiah 29:11 says “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.” God loves you. He loves you where you are at today no matter what shape you are in.

It amazes me to think how much this event shaped my life for the better. It wasn’t until the spring of 2009 that I began to feel somewhat normal again. That summer I completed my 200 hour yoga teacher training and in September Josh and I went on our first hike in over two years.

IMG_1520

Happy to be hiking again! First hike after my illness. (September 2009)

God is good, all the time. I hope you have enjoyed getting to know a little bit more about me. If you or a loved one is experiencing Guillain–Barré Syndrome and have any questions or just would like someone to talk with please feel free to email me. You can connect with me by clicking on the envelope icon underneath my picture in the sidebar.

Thank you for reading and leaving your wonderful comments!

Share

The Girl Behind The Blog: Part 5

The following post is part of The Girl Behind The Blog series that details my story of illness and recovery starting in March of 2007. I believe that God created me for a reason and each experience I have can draw me closer to HIM and be used to encourage others. This post and those that follow in the series detail a pivotal moment in my life that changed me forever.

If you are just joining the story you can read the previous posts: Part 1Part 2Part 3, and Part 4.

So what in the world was I diagnosed with and what did it all mean? Typically when I am making a new friend this topic usually comes up within the first or second iced tea or workout date together. If you have the desire and time to listen to all of this that is an indication to me that we are probably and most definitely going to be amazing friends.

After weeks of medical testing I was diagnosed with Guillain-Barré Syndrome (also known as Acute Inflammatory Demyelinating Polyneuropathy). It is totally a mouthful but sounds super impressive when you can pronounce it correctly (pronounced: ghee-yan bah-ray). I will try and explain Guillain-Barré Syndrome to the best of my non medical degree ability.

  • Acutea disease of rapid onset or a short course (as opposed to chronic or longterm)
  • Inflammatorythe body’s protective attempt to remove the cause of injury and promote healing by causing pain, heat, redness, swelling, and loss of function to the area
  • Demyelinatinga disease of the nervous system which causes damage to the myelin sheath
  • Polyneuropathya serious, unpredictable, occasionally progressive, life threatening disorder of the nervous system

Guillian-Barre Symdrome is a very rare medical condition (only affecting 1 out of every 100,000) believed to be an autoimmune disorder. The nerves outside the brain and spinal cord are affected and often cause people to have some degree of paralysis. Each time the brain sends an impulse to the muscles, the impulse travels along the myelin sheath that covers the nerve. When the myelin in my body became damaged, the signal from my brain to my muscles became distorted. My brain could no longer communicate effectively with my muscles.

Weakness and tingling sensations in the legs are the first symptoms and can rapidly increase eventually leaving the muscles in a state of paralysis. It can take a few days to several weeks for the disorder to develop and there is no known cause. Usually symptoms appear after the patient has had a respiratory or gastrointestinal viral infection or has had a recent surgery. There is no known cure and the recovery period can last anywhere from a few weeks to a few years. While it is not as common there is a small percentage of patients who relapse years after the first attack.

My first treatment plan consisted of several weeks of high volume prednisone along with an anticonvulsant medication called neurotin. As much as I disliked the havoc the prednisone released on my body, namely a puffy face and major breakouts, I did start to feel somewhat better around mid June.

IMG_0471

Puffy face with crazy breakouts, but I am starting to feel better! (June 2007)

I was still off of work and on short term disability and getting ready to consider easing myself back into my job with my doctors approval, when I encountered a set back in my progress. I lost all feeling from my neck down. From there it gets pretty crazy. It is hard for me to believe everything that happened over the course of the next two years. Are you ready for the highlights?

For several weeks I had to move back into my parents house to be taken care of. My amazing and wonderful family. I can’t say enough about how supportive they were. Driving me to the doctors, bringing me food, bathing me, helping me get dressed, carrying me to the bathroom, and doing whatever they could to lift me up and encourage me.

My symptoms continued to worsen and I was referred to a neurologist whose subspecialty practice focused on neuromuscular diseases. I spent many hours in that doctors office, consult room, and treatment room. I was given more drugs and each month had two days of back to back treatments of Intravenous Immuno Globulin or IVIG to aid in my recovery. IVIG is composed of healthy antibodies from a multitude of donors. It is mixed in a bag and a tube runs from it to a vein in the arm. On the day of my treatments I would bring my iPod filled with movies and music to keep me occupied for 5 hours. Each day of treatment cost $10,000 and was covered by my insurance.

The human resource manager at my job told me over the phone that he thought I was making up my illness and that I must not want to return to work. He said it was highly suspicious for a person of my age to be plagued with the amount of symptoms that I supposedly had. Reading the newspaper a year later I let a smile spread across my lips when I read his employment had been terminated.

The sweet and wonderful man who married me during all of this was my rock. I don’t know how I would have survived any of this without him. I think back to our wedding and it was beautiful. God provided me with the strength I needed to walk down the aisle holding on to my Dad as we walked towards Josh.

IMG_4447

Wedding Day (November 10, 2007)

Days after our wedding we learned that Josh had made it past the last round of interviews for the Mesa Fire Department. I couldn’t have been prouder of him.

In the fall of 2008, almost a year and half after my initial symptoms, when Josh was going through his fire academy I became very sick again and had to be hospitalized. My immune system was shot from all the medications and my body was on the verge of shutting down. I was hospitalized for a week and can remember my Grandpa coming to sit with me. I was in so much pain. Tears were running out of my closed eyes and I had no energy to even attempt to move or talk. I was so thankful at that moment for my Grandpa coming to sit with me, pray over me, and hold my hand. After I was released I stayed with my Grandparents while Josh went through his fire academy. I needed someone to be with me at all times. It is very humbling to have your Grandma give you baths when you are 24 years old. I was very thankful and so very grateful.

photos_076

Grandpa and Grandma

Medication is an amazing thing but the side effects can be nasty. Breathing difficulties, problems going to the bathroom, blurred vision, fatigue, and a loss of appetite were several of the larger complications that I encountered in addition to the paralysis. My weight went from 130 down to 110 and I was constantly exhausted.

I never returned to my job. My short term disability ended and I had to apply for social security disability. This is such a long story and seriously made me doubt the process that has been set up for those who truly need assistance. The paperwork took me weeks to fill out because my arms did not work and I felt so hopeless after 3 rejections letters. I was ordered to sit before a social security judge and tell my story, but this did not happen until almost 3 years after my initial diagnoses. By this time I had started teaching yoga and was well on my way to being fully recovered.

There is so much more I could tell you but hopefully this paints a larger picture of what when on in my life during this period of time. I love sharing this part of my life with people. Tomorrow please check back for my final post on this series. I will be sharing resources I used during my recovery and several lessons that I am thankful to have learned from this experience.

Share

The Girl Behind The Blog: Part 4

The following post is part of The Girl Behind The Blog series that details my story of illness and recovery starting in March of 2007. I believe that God created me for a reason and each experience I have can draw me closer to HIM and be used to encourage others. This post and those that follow in the series detail a pivotal moment in my life that changed me forever.

Need to catch up in the story? Read Part 1,  Part 2, and Part 3.

Being off work for weeks at time would normally be awesome but when you are sick those weeks feel like an eternity. My days were all starting to blend together as I settled into my new routine.  With a mono diagnosis the prescribed treatment is rest. So that is what I did. I rested. I couldn’t participate in any of my regular activities. Not that I actually felt well enough to do them, but to go from as active as I was to sleeping on the couch all day was as mentally tasking to my system as any workout ever was. No gym, hiking, running, mountain biking, or lifting weights. Instead I decided to make good use of my sick time by planning my upcoming wedding. In between wedding planning I watched tv and of course took several naps during the day.

Over the next two weeks I didn’t notice any significant change in how I was feeling physically. My legs were still bothering me and it seemed to be getting harder to walk. I had a feeling deep down that something else going on besides the mono. Have you ever had a feeling like that? It was like my body was sending me all these clues to solve a mystery but I just couldn’t put my finger on the culprit. I decided to make an appointment with a neurologist to see if they could pinpoint the cause of the weakness and tingling sensations in my legs. I was starting to feel like a prisoner in my own body and I was determined to figure out the cause as soon as possible so I could return to my life that had been put on hold.

Each day brought several calls from friends and family checking in to see how I was doing. Most of time I had nothing new to report. It can get a little monotonous at times answering the same questions over, and over again. While I was very appreciative of everyones love and concern for me, each phone call only reiterated that I wasn’t feeling any better. My overall mood was starting to sour. I couldn’t understand why I wasn’t getting better. I was praying, resting, drinking fluids, and following every other order I had received from the doctor.

I met with my first neurologist at the very end of March. My emotions were mixed. I was scared, anxious, and hopeful all at the same time that nothing or something would be discovered lurking within my body. After a very detailed exam it was determined that all of my symptoms were a direct result from a rare interaction between the antibiotic I had been prescribed and the mono. This again was encouraging! I left that appointment feeling like if I could just go home and rest for a few more days all would be well.

My loving fiancé, now hubby, Josh made it a point to come and see me on his lunch breaks when he could. He was in the process of testing for the City of Mesa’s Fire Department and currently worked for the Aquatic Department. With my time off from work I was helping him study for his upcoming test by making him flashcards out of his testing packet and book. Each day I would have a new stack of cards waiting for him to take home and add to his ever growing pile.

IMG_0306

1 Month Before Our Engagement (November 2006)

In mid April during one of Josh’s lunch time visits I was in mid walk down the hallway to go to the bathroom. I was getting ready to take a step forward when my legs unexpectedly and suddenly gave out from underneath me. Trying to regain balance was useless. I had absolutely no say in what my legs were doing. My arms also seemed to be disconnected from my body because I was telling them to move to help break my fall and they did nothing. I came crashing to the floor, falling on my face.

Uncontrollable sobs escaped my lips as Josh rushed over and picked me up off the floor. Never in my life had I felt so helpless. With tears pouring down my cheeks, I cried as Josh held me. Within the hour I had another appointment scheduled with the neurologist.

There is so much I want to share with you. So many things I could tell you about what it is like to not be able to trust your own body. It is the ultimate betrayal. My body that I had known for over 23 years of life was suddenly unfamiliar to me. I could not count on my arms to be steady enough to use a knife or my legs to carry me as I walked and driving was definitely out of the question. Simple everyday tasks that I had taken for granted were now out of my control because I had no control over my body.

I wasn’t sure what to expect as I headed back into the neurologists office. Waiting for the physicians assistant to come in was leaving my stomach in knots. The PA knocked twice on the door, entered the room and greeted me with a kind smile and warm handshake. I was asked to perform various tasks like standing calf raises (I was only able to muster up 5 hanging on to the wall for support) and walking down the hallway in straight-line as though I was on a balance beam (had I actually been on a balance beam I would have fallen straight to the floor). I felt nothing as a dull needle was used to poke the bottom of feet and had a non existent reaction to having my knee tapped. Obviously, at this point it was clear, I was not just dealing with mononucleosis.

Towards the end of the appointment I was given a brief breakdown on what might be causing my symptoms. The list ranged from Multiple Sclerosis, Chronic or Acute Inflammatory Demyelinating Polyneuropathy, HIV, Sexually Transmitted Disease, or an Autoimmune Disorder. I was shocked at what I could possibly be dealing with. The lab request for my blood draw was impressive looking and I was going to be scheduled for a nerve conductivity test. I wasn’t worried about getting diagnosed with a sexually transmitted disease or HIV because I was not sexually active and had never had any blood transfusions. On the other hand, the remaining possibilities seemed to be looming over my head like a dark cloud.

By this time it was starting to look like I was going to be out of work a little longer than initially anticipated. At 23 years old I filed FMLA paperwork with the City of Chandler for a medical leave. I was draining my vacation and sick leave time and was starting to freak out about future mortgage payments, medical bills, and car payments. Each day during my quiet time I would pray and pray asking God to make me better.

A week later, after my blood work had come back negative for every test that was run, I returned to my neurologist for a nerve conductivity test. Nerve conduction studies are used mainly to evaluate the function of the motor and sensory nerves in the body. In my case this test would help reveal the extent of the weakness in my legs. I had several pairs of metal disc electrodes attached to my skin from my knees down to my feet. I looked like a science experiment. After I was hooked up, quick electrical pulses were given to each nerve and the results showed the time it took for my muscles to contract in response to the shocks.

IMG_0437

The test was uncomfortable but not unbearable. It was an odd sensation to know the shock had been delivered but not see any reaction from my muscles until moments later. I was finally going to know what was happening with my body. I sat on the edge of my chair as the neurologist started to go over the results of my test.

Thanks for reading and here is Part 5 to continue the story.

Share