I had just lifted weights and went to get my activity card. All of a sudden, everything was silent and dark. I couldn't see or hear anything. I was familiar with the activity center and felt my way to the locker room. I lay for 10 minutes, at least, waiting for my vision and hearing to return. When it finally did, it felt as though someone was pounding my head with a hammer. My roommates took me to the ER and the doc thought she heard a heart murmur. That was the beginning of MANY specialists scratching their head. I gained 90 pounds in less than a year, my vision and hearing would come and go. I got dizzy and was constantly nauseas. I had stabbing pains and would wake up with gigantic, dark bruises for no reason. I started having intestinal issues. My memory got horrible. My balance wasn't great. And the specialists of many types couldn't tell me what was wrong. But, they did get a good amount of my money. That was in 1998. I was barely 19 and was afraid I was going blind and deaf.
It took me a while before I correlated over-heating with flare ups of my issues. I couldn't run like I had before. I got really good at faking like everything was fine. I turned to voices, when I couldn't see faces. If anyone was sick, I would get the worst version of their sickness and needed three times the amount of healing. I kept smiling, laughing, and pushing through. I hoped for answers, but didn't get them. I graduated with my Associate's Degree, went on to obtain my Bachelor's degree, and lived in Jerusalem for a bit. I had goals and wasn't going to let anything stop me.
In 2002, I had my first two spinal taps. I kept telling them, the first time, that they were forgetting something. They called back the next day to say I was right. They forgot to check pressure. I had two spinal taps in two days. My body takes so long to heal, that I had a spinal headache because spinal fluid was leaking inside of my body. I will never forget the day when I got the call that they found demyliation and I had MS. For the first hour, I was actually pleased. There were finally answers. FiNaLlY!!! I was happy, relieved, and nearly excited because it made sense. The next hour was a deep depression. Those answers weren't too promising. Would I end up in a wheel chair? I knew no one with MS and knew little outside of weakness and wheel chairs associated with those wretched two letters.
I then went to the Mayo Clinic. It is an incredible establishment. We had to jump through hoops with my insurance company and made sure to get pre-approvals on each and every test. (Eventually my insurance company paid for nearly none of it). I walked away with thousands of dollars in debt and several answers.
HOSHIMOTO'S THYROIDITIS (HYPOTHYROIDISM).
INSULIN RESISTANCE.
POLYCYSTIC OVARIAN SYNDROME (PCOS).
LUPUS.
MULTIPLE SCLEROSIS.
On my third and fourth spinal tap, the Mayo Clinic doctors said, "I have NEVER had a patient like you." They kept hitting my spine and I kept telling them that they could do it. Rarely does the patient encourage the doctor. I told them I had to get back to school and they HAD to do it that day. After 4 failed attempts, they tried again the next day. The other doctors said, "I canNOT believe there is THAT much wrong in one person's body."
Every doctor since has said the same thing. "I have NEVER had a patient like you." If there is a side effect to a drug, even if it is rare, I get it. My family jokes that they will send me in to a place to see if something is wrong, because my body will sense it. =) BONUS.
Eventually Lupus was rulled out. Multiple Sclerosis is so hard to determine, at times, because it is the MOCKING BIRD DISEASE. It mimics so many others.
Brain lesions didn't show up until later. I avoided neurologists, MRIs, and acknowledging the disease until my body wouldn't let me any more. Over the years, I fell a couple of times. Every day since I was 19, I was nauseas and had pain. I don't remember what it is like to exercise and feel good. I pay for exercising, depending on how much I do, for days after. In a bad way. I always have shadows in my eyes and ringing in my ears. I secretly worry when I hear someone cough hard or announce that they are sick. Simple things, like brushing my hair, going outside in the summer time, and even walking at times, I no longer take for granted. I used to want 8-10 kids. My body disagrees.
My soul and my body disagree often.
One of my favorite movies is, "Just Like Heaven." At one point, Reese Witherspoon realizes she is a ghost and sees her comatose body lying there. She tries to connect with the body, but simply cannot. I was going through an especially difficult time (physically) when I saw that and felt like I could relate all too well. My body doesn't listen. Doesn't connect. Soul and Flesh are at odds from time to time.
In 2008, I couldn't live in the denial stage anymore. I got another MRI and it showed brain lesions. A nurse came to my house to show me how to mix the $1,000 monthly medication in the vials. I had diagrams showing that I had to rotate where I injected because it could cause problems if I injected in the same spot. My mom had to be with me because I cannot give shots to myself in the back of my arms. I was in my first year of teaching. My body rejected the meds HORRIBLY. Only one other time had I ever been in such a dark place. (A doctor messed up my meds and my body started to shut down. I started to die and nearly ended up in a coma. That is a story for another day). I dealt with insomnia, night sweats, focus/concentration issues, and could hardly move. My neurologist said, "Now you walk like an old lady." I told her that I felt like the MS injections were GIVING me MS. Not HELPING!
I quit and didn't go back to a neurologist. I'm back to a point that I know I need to get in with a neurologist. Soon.
All of this has been a struggle. (Understatement of the year). BUT, I'm a strong believer of NOT letting something or someone rule my life. I do NOT believe in lying down in life, so to speak. Have I experienced the 5 stages of grief? Yes. I try to have a positive attitude. I used to say, "At least I can still walk and talk." When I couldn't walk well, I said, "At least I can still talk." When I couldn't talk well, I said, "C'mon!" =) haha
The worst was when...
*My best friend said my name and for 10 minutes I couldn't think of who she was talking about.
*I thought I was going blind and deaf.
*Every winter I got close to pneumonia and need three rounds of antibiotics.
*It took hours to get ready. Restroom. Rest. Shower. Rest. Brush Teeth. Rest. Brush one side of hair. Rest. Brush the other. Get dressed. Rest. Make up. Rest.
*I was single, 30, living with my parents (because I ran out of money earning my Master's degree), and my body was rejecting MS injections.
*Going from specialist to specialist begging for answers, but only getting darkness and silence.
Thankfully, I have maintained a positive attitude 90% of the time (give or take). I have refused to let MS define me. I set goals and accomplished them. Maybe not quite on the time table I had hoped for...but I did. I will.
*I earned an Associate's, Bachelor's and Master's degrees earning Achievement Awards, Dean's lists and the latter was with a 4.0 GPA. Later in life, I may get a PhD.
*I served in my church as RS president 3 times, Primary President 1 time, and many other callings in between.
*I walked where Christ walked in the Holy Land and have developed a deep and personal connection with my Savior.
*I worked with abused and neglected kids. They begged me to take them home with me. I desperately wanted to be a mother and worked with parents who didn't love theirs. Some literally threw their baby in the trash. It was emotionally exhausting, but extremely rewarding. I learned much.
*I taught for years and loved each and every student. Many found success for the FIRST time in their lives, learned they were of worth, and tested several grade levels above their previous years.
*I helped build a school in the slums outside of Nairobi, Kenya, donated medical and school supplies to 5 orphanages, met with the Masai tribe to discuss education of their young girls, and did a safari on the Masai Mara.
*I met my Greek family in Greece, while also visiting 6 European countries. Castles. Medeval banquet. Jane Austen and where they filmed Harry Potter. Bath. Queen's birthday celebration. Chunnel from England to France. Night train through Italy. Tour under the Vatican. Cruise through Greek isles. The home of my great-grandfather. Ephesus and the Virgin Mary's home.
*I married my soul mate, best friend, and hero.
*I finally had my first baby.
*I've met and maintained amazing friendships with people from around the world.
I am blessed. God is aware of me. He is aware of you. No matter your struggle, there IS a silver lining. Sometimes you have to stare and search intensely for the bright, HOPE-filled silver lining. BUT, it is there. You can find bad anywhere if you look hard enough. You can find good anywhere if you look hard enough. I choose to find the good. Because, life is what we've got and it might as well be fun, positive, and bright.
~~~~~~~UPDATE~~~~~~~~
MS ate away at both trigeminal nerves in my face/head and my left side occipital nerve. I believe this was around the time that I was on Tecfidera and had my two worst exacerbations. My neurologist refused to listen to me and after 7.5 months of several side effects, especially severe diarrhea EVERY SINGLE DAY, he finally took me off of it. The active dymeliation and nutritional issues I had thereafter were hard to deal with and later caught up to me. After about a year or two the swelling on my head and face, as well as the intense stabbing pains in my eyes and head got unbearable. At the same time I had irregular heart beats, hair falling out to the point of bald spots (same area I had swelling and stabbing pains), and many other symptoms that turned out to be BOTH HYPERthyroidism and Trigeminal & Occipital Neuralgia. I've been HYPOthyroid most of my life, but I was surprised and a bit clueless with regard to hyperthyroidism. Once we finally discovered the Trigeminal and Occipital Neuralgia, my neurologists and I experimented with various medications. Trigeminal Neuralgia is also called "The Suicide Disease" because more than 1/4 of patients with it (before treatment) committed suicide. It is one of the most painful diseases known in the medical world. Each time I was put on a different medication, my body either rejected it with horrible side effects or my body adjusted and needed more and more. There are only so many anti seizure medications and only so high you can go. It was obvious that I needed surgery to conquer my debilitating pains. I went in for RADIOFREQUENCY lesioning of my trigeminal nerve (V1 & V3). However, I woke up in the middle of my surgery. I thought they were killing me and begged them to stop in between screams. I felt the needle inside my skull and the burning (to create lesions for numbness). I was awake from then on even though there were times I couldn't see (but still spoke about doing my part to move off the surgical table), or talk. I begged and begged to leave after a horrible attack and explaining to my neurosurgeon that the surgery was too painful. We discovered that he had numbed most of my face and part of my head, and successfully lesioned V2 & V3 (later with an electrode devise I learned he also got a small portion of V1). I was aware of everything and wanted to leave the hospital immediately. The doctor on the floor of recovery said I had to wait at least 20 minutes after just finishing my minor brain surgery. 20 minutes later, I was being checked out to be released.
Waking up in the middle of a minor brain surgery was not the worst, however, because I developed ANESTHESIA DOLOROSA and many infections. I believe I caught a horrible sickness the day of my surgery (possibly in the admissions waiting room). The day of my surgery I developed burning and stinging in my mouth and lips, as well as a cough. On my 2.5 week check up with the neurosurgeon, he realized how bad I was and how I push through incredible things. He also repeated over and over how HORRIBLY damaged my trigeminal nerve is. He sent me down to the ER and I was admitted for 4 days. Everywhere they looked I had infections. (Pneumonia, UTI, sinus infection, and possibly meningitis {although the cocky resident doctor wouldn't listen to me and failed in his attempt at a spinal tap and then I had been on IV antibiotics for so long they couldn't have tested}). The absolute worst, though, was the intense constant pain I feel. I always feel as though my lips are burning, my tongue is stinging, someone is kicking in my front teeth, yanking out my right jaw, burning on parts of my face, a sensation that bugs are crawling under my skin in my face near my ear, electric jolts that sometimes hit so hard my whole face or body jerks, stabbing pains with knives, reduced hearing in my right ear, and twitching of my eye and face when the pains are too bad. Anything I do with my face, especially my mouth, causes the burning, stabbing, stinging, yanking/pushing, electrocuting, bugs crawling, twitching to greatly increase. I haven't been able to sing for over a year, can only talk about 30 minutes a day without too much pain, and am terribly tortured by everything in my environment. I've had to deal with pain, nausea, fatigue, dizziness, and decreased vision and hearing every single day since early 1998. But the constant pain I now feel is a level that thankfully few people on earth ever have to endure.
~~~~~~~UPDATE~~~~~~~~
MS ate away at both trigeminal nerves in my face/head and my left side occipital nerve. I believe this was around the time that I was on Tecfidera and had my two worst exacerbations. My neurologist refused to listen to me and after 7.5 months of several side effects, especially severe diarrhea EVERY SINGLE DAY, he finally took me off of it. The active dymeliation and nutritional issues I had thereafter were hard to deal with and later caught up to me. After about a year or two the swelling on my head and face, as well as the intense stabbing pains in my eyes and head got unbearable. At the same time I had irregular heart beats, hair falling out to the point of bald spots (same area I had swelling and stabbing pains), and many other symptoms that turned out to be BOTH HYPERthyroidism and Trigeminal & Occipital Neuralgia. I've been HYPOthyroid most of my life, but I was surprised and a bit clueless with regard to hyperthyroidism. Once we finally discovered the Trigeminal and Occipital Neuralgia, my neurologists and I experimented with various medications. Trigeminal Neuralgia is also called "The Suicide Disease" because more than 1/4 of patients with it (before treatment) committed suicide. It is one of the most painful diseases known in the medical world. Each time I was put on a different medication, my body either rejected it with horrible side effects or my body adjusted and needed more and more. There are only so many anti seizure medications and only so high you can go. It was obvious that I needed surgery to conquer my debilitating pains. I went in for RADIOFREQUENCY lesioning of my trigeminal nerve (V1 & V3). However, I woke up in the middle of my surgery. I thought they were killing me and begged them to stop in between screams. I felt the needle inside my skull and the burning (to create lesions for numbness). I was awake from then on even though there were times I couldn't see (but still spoke about doing my part to move off the surgical table), or talk. I begged and begged to leave after a horrible attack and explaining to my neurosurgeon that the surgery was too painful. We discovered that he had numbed most of my face and part of my head, and successfully lesioned V2 & V3 (later with an electrode devise I learned he also got a small portion of V1). I was aware of everything and wanted to leave the hospital immediately. The doctor on the floor of recovery said I had to wait at least 20 minutes after just finishing my minor brain surgery. 20 minutes later, I was being checked out to be released.
Waking up in the middle of a minor brain surgery was not the worst, however, because I developed ANESTHESIA DOLOROSA and many infections. I believe I caught a horrible sickness the day of my surgery (possibly in the admissions waiting room). The day of my surgery I developed burning and stinging in my mouth and lips, as well as a cough. On my 2.5 week check up with the neurosurgeon, he realized how bad I was and how I push through incredible things. He also repeated over and over how HORRIBLY damaged my trigeminal nerve is. He sent me down to the ER and I was admitted for 4 days. Everywhere they looked I had infections. (Pneumonia, UTI, sinus infection, and possibly meningitis {although the cocky resident doctor wouldn't listen to me and failed in his attempt at a spinal tap and then I had been on IV antibiotics for so long they couldn't have tested}). The absolute worst, though, was the intense constant pain I feel. I always feel as though my lips are burning, my tongue is stinging, someone is kicking in my front teeth, yanking out my right jaw, burning on parts of my face, a sensation that bugs are crawling under my skin in my face near my ear, electric jolts that sometimes hit so hard my whole face or body jerks, stabbing pains with knives, reduced hearing in my right ear, and twitching of my eye and face when the pains are too bad. Anything I do with my face, especially my mouth, causes the burning, stabbing, stinging, yanking/pushing, electrocuting, bugs crawling, twitching to greatly increase. I haven't been able to sing for over a year, can only talk about 30 minutes a day without too much pain, and am terribly tortured by everything in my environment. I've had to deal with pain, nausea, fatigue, dizziness, and decreased vision and hearing every single day since early 1998. But the constant pain I now feel is a level that thankfully few people on earth ever have to endure.
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