Everyone with MS has a story, here is mine...
Rachel vs. Speaker
Speaker, 1 Rachel, 0
It all started in July of 2010 when a big speaker fell off the wall and hit me on the head. I was at my brother-in-law's house watching "Fly Boys"--not the one with Brad Pitt--but a flick filmed in my hometown, St. George, Utah. There is a crazy scene where a teenage boy jumps out of a plane. I was sitting in a recliner holding my baby Nate, who was 3 at the time. Suddenly something hit my head, I was dazed, but didn't pass out. I put my hand on my head and saw it was covered in blood. A large speaker had jogged off a shelf and right onto my head. Thank goodness it didn't hit Nate. Long story short, we were poor, didn't have insurance and ended up going to my Bishop's house (church congregation leader), who was also an ER doctor. He was kind enough to staple my head and send me on my way. I had a lot of staples and a great story.
I believe MS was probably dormant in my body and the head trauma is what kicked it off. There are many theories as to what makes MS begin and physical trauma is a big one with a solid research base. As a teen I had been sickly, at best, being diagnosed with Epstein Barr Virus, several bouts of mononucleosis, and Juvenile Rheumatoid Arthritis (by default--not sure if it was really the case). Interestingly enough, mono and EPV tend to be precursors of MS. These autoimmune issues and food allergies should have been a big ol' red flag, but back in the day, these types of things weren't on anyone's radar. My autoimmune journey continued into adulthood with frequent sickness (lots and lots of antibiotics), severe seasonal allergies, continuing food allergies and endometriosis. My body was primed for MS and after the big bang of 2010, like falling dominoes, my body started to fall apart.
I started to have weird symptoms shortly after it all happened: killer headaches (my scar would burn--like Harry Potter), severe neck pain (spoiler: neck and spine were pretty messed up), numbness throughout my body, continuing stomach issues, leg cramps (felt like restless leg), and vertigo--scary, dizzy moments where my world would literally turn upside down. I began to feel anxiety and depression on and off without apparent cause--making me seem kind of nuts. I powered through until 2012, when I began my teaching career and finally had health insurance.
I'm pretty open-minded, so I started to pursue traditional and non-traditional healing and diagnosis. I visited several chiropractors included a holistic one who wanted me to wear yellow glasses to cleanse my liver...this is when we parted ways. Nothing helped the pain and symptoms I was having. Nothing made sense and no one could put the pieces together. I felt like I was crazy.
Fast forward to December 2013. I had been seeing a pain doctor, who discovered my neck was indeed messed-up and had me on traction and physical therapy to try to repair the damage. When I could slap both hands on my thighs and feel electrical sparks radiate throughout my body and bend my neck and have the same sensation, he became concerned and ordered a MRI. At the time, he told me it may indicate MS, but it was very unlikely so he wanted to MRI my brain because he hold me that lesions in two places may indicate MS. Here is what the report actually said:
Impression:
T2 hyperintense lesions within the posterior aspect of the
spinal cord and possibly within the pons. Appearance is most
compatible of multiple sclerosis. MRI of the brain is
recommended in addition to neurology consult.
The brain MRI was without contrast (major misstep--always order contrast--they show lesions!), looked fine and he said my spinal lesions were just an anomaly--nothing to worry about. In hindsight, I should have been more proactive, asked to see the reports, get a second opinion, see a neurologist. However, I just didn't know what I know now. He was a nice man, a friend of my parents. I didn't question. Sigh. Hard lesson learned.
Time moved on and my symptoms continued to ebb and flow. I became busy with parenting, having leadership roles at my school and church, teaching full time, etc. PT with the pain doctor was leading me down the road to nowhere and my neck pain, numbness, etc. continued to thrive. I also began to experience intense joint paint throughout my body that would come and go unexplained as well as emerging bowel and bladder issues. I prayed, I visited with other people, I researched--anything to figure out what was off. One day I was struck by a conversation with a friend in my education program who told me of a chiropractor she went to, and her husband worked for, who was amazing and didn't do physical manipulation (which I hate about chiropractors). His name was Dr. Spencer Anderson with Lifestyle Restored: Whiplash Center of Utah I called and made an appointment to see him in April of 2015.
Dr. Anderson was kind, empathetic and sharp as a tack. He was totally invested in giving me pain relief and finding out what was wrong. His easy manner put me at ease, and off we went. After imaging, he found that my neck, due to the trauma and subsequent bad treatment, was curved the wrong way: kyphosis-yikes! We began a regiment of readjustment, stretching, a theraputic neck pillow (I complained about this one for 2 weeks until magic happened and I could finally sleep at night). It was a process of retraining my body and my neck. That summer, I clearly remember telling Dr. Anderson that I was getting through each day pain-free, but couldn't shake the joint pain and what I was calling flank pain where the sides of my back would just ache. I now know it's referred to as MS Hug. He thought about it and asked about gluten. He said that some people who are gluten-sensitive have joint pain and fatigue similar to what I was describing and encouraged me to go off gluten 100% and see what happened.
I trusted him and he'd never steered me wrong before...so, after a long break-up letter to gluten and weeping over the now-forbidden bread, I became GF. I'll do another post about gluten-free living, just know it's totally manageable and totally worth it. Dr. Anderson also recommended that I see Dr. Grace Paradela, Internist. He had met her and found her to be not only very intelligent but a gift physician who could catch problems and think outside of the box. This conversation set me on the trajectory to diagnosis--which made all the difference!
That Fall I had pulled a muscle in my back and was unable to move. It was the most horrific pain I've ever had. My husband hauled me (literally) to Dr. Anderson, who made it possible for me to walk again and again strongly encouraged me to get into Dr. Paradela. He felt like there was more going on in my body than just neck issues and knew I needed another doctor to weigh-in and approach from a different angle. Thank the Lord for humble, intuitive physicians.
When you're immobile, you'll promise anything. So shortly after the back was in working order, I made an appointment with Dr. Paradela. One of my closet friends was a patient of Paradela, so I already knew to expect a feisty, pint-sized doctor. However, no words prepared me for the force of nature that is Dr. Paradela, and I say that with the greatest amount of respect and love! She flat-out told me I was overweight, not exercising enough and something was wrong with me. It was all true, and I was ready to do something about it. Blood results showed I had an extremely low functioning thyroid and wasn't absorbing vitamins...like not at all. This was not only preventing healthy weight loss, but causing all sorts of other issues. Paradela also suspected I might be have celiac disease because my vitamin levels were rock bottom. I also had frequent bowel issues, unexplained rashes, fatigue, joint pain, leg cramps, etc.
Over the next year I lived without eating gluten and my vitamin levels were starting to rise. I added a few vitamins as well and started to have less fatigue, less leg pain, better sleep quality, etc. I was able to slowly start to lose weight too. I'd still see Dr. Anderson when my back or neck felt weird and I started regular massage therapy at his office with Debbie, who is excellent. However, the numbness, join pain and a host of other symptoms continued.
In October 2016, I woke up one morning and was numb from my calves down on both legs--completely bilateral. Weird. I stumbled a little, but had full mobility and didn't think much of it. Crazy I know. However, I was having numbness all of the time that would come and go, usually not lasting more than a day or so. Numbness that would spread through my face, or down my legs, or hands or pulsate in a specific area. I attributed all of this to my neck injury years before. It's amazing how you can adjust and accept weird for normal.
This numbness was different, it didn't go away. I went to Dr. Anderson first. He tried everything he had, but the numbness didn't dissipate. By this time, I had already turned to Dr. Google and kept popping up on MS sights, which scared the hell out of me. It was mid November and I was preparing to fly to Atlanta with my teacher friends to attend a conference. My big concern was if I could get proper blood circulation from my legs. Dr. Anderson had a quiet moment and looked at me and mentioned MS--saying I should get an MRI quickly and see what was going on. His observations confirmed my own research and I made an appointment with Paradela right before I left town. Paradela thought maybe my calves were seized up and tried dry needling. She told me to prepare to feel pain while she tried this. I laughed and told her I couldn't feel anything...she didn't laugh back. I mentioned off-hand that an MRI years ago showed spinal lesions, but my doctor at the time said they were no big deal. Paradela was shocked and gave me crap about not saying anything sooner. She approved me to fly and ordered the MRI to happen right when I got back.
Wednesday, November 30, 2016. After teaching a full day I walked into Dixie Regional Medical Center with a big smile on my face to get my MRI. The radiologist looked at my charts.
"You here for a follow-up?" he asked
"No," I answered, confused, "My legs have been numb for 6 weeks or so--just coming in for a diagnostic."
"Right," he answered.
I climbed in the dreaded MRI tube and tried to not let the mind-numbing thumping of the machine get to me.
Everyone has a talent--mine is time. I can estimate time and tell you what time it is, almost on the dot, no matter where I am. Previous MRI's had been about 45 minutes. When I could tell an hour passed, I started to move my eyes to get their attention.
"Rachel, is something wrong?"
"No, aren't I finished though?"
"Um, no, we're not even halfway."
"Oh..."
Paradela had ordered MRI's on my brain, lumbar spine, thoracic spine and cervical spine--with and without contrast--she wanted to know for sure what was happening to me. 2 1/2 hrs. later I came out of the tube and sat up.
The very kind radiologist sat next to me, apologizing for the length.
"When do you see your doctor?" he asked
"I've got an appointment next week." I replied "Nothing to worry about."
"Yeah, you should get in soon." he softly answered.
Now, I know that radiologist can not diagnose and he said nothing that would violate his code of ethics, but his voice was tinged with concern and I took note.
Later that night I felt an urgency to get answers. I logged on to my patient portal where our local hospital stores all of your medical records. To my surprise, my MRI's had already been analyzed, read and results were posted. It was 10pm at night, my husband was on his way home from somewhere, my three kids were in bed.
I skipped the doctor-speak and read the "impressions" section, which is in layman's terms. Only two phrases stood out.
"New, active myelitis lesion within the distal thoracic cord at the T10 level consistent with history of MS."
"Active white matter plaque in brain, consistent with MS."
I cannot express the fear and horror that filled me at that moment. MS? All I could see was my brain eroding, being in a wheelchair, losing everything that defined me. Would I lose my personality, my teaching career, my ability to mother, to walk?? Would I lose me? It was terrifying. I started to sob, heaving, keening sobs. I cried like I have not cried since.
My husband walked in the door. Hearing me weep, he rushed in. Between sobs I told him what I found. He just held me and we cried together. He assured me I'd be ok and he would always be here to support me. We prayed, cried some more and I feel asleep praying to God to carry me through this and give me peace and strength. I finally slept as tears soaked my pillow.
I abruptly woke up the next day. My first thought: "I have MS". My second thought: "I'm going to be ok." God gave me peace. The crippling fear I had the night before was gone. The exchanges during my MRI made sense. The guys were seeing my old MRI's as they took new images and saw, plainly, that it showed MS since 2013.
Sometimes truth, even awful truth, is a type of comfort. Now, it made sense. I wasn't nuts, I wasn't a hypochondriac, I had multiple sclerosis. A very real disease that I knew nothing about.
When I'm faced with difficulty, my default is to pray and seek guidance from my Father in Heaven. A year and a half ago, I went through something terrible which solidified my relationship with the heavens. That morning I simply prayed, thanking God for the peace and asking what to do next. Get into Paradela, today was the quiet answer.
My husband and I embraced, I told him my plan and headed to school. That morning, I gathered my principal and teacher friends in the workroom in my hall. I told them what I had found last night. These magnificent women surrounded me, offering me nothing but love and support. I called Paradela's office as soon as they opened.
"So, I don't have an appointment until next week (it was Thursday when I called), but I saw my MRI results from yesterday. Yeah, I have MS and wondered if Paradela wanted to see me sooner." I asked in a calm, collected voice.
The receptionist gasped and said she would forward the message and they'd call me back.
I received a phone call shortly thereafter asking me to come in as soon as school was over. Unbeknownst to me, that call set off a chain of events that would be life-changing for me. I still get teary as I write about it now.
When I saw Paradela that afternoon, she was straight-forward, calm and had my back. She explained that her assistant told her my diagnosis and she had been working for me all afternoon. She was shocked I had MS and that I read my reports already. Through her login, she couldn't even access the scans. Working her magic, she got her hands on them, consulted with the hospital neurologist and made a game plan. My largest lesion was where it could have caused temporary paralysis and I need steroid infusions immediately to bring down the swelling. The fastest method of treatment was to be admitted to the hospital and start the 3 day infusions that night. Paradela told me she called ahead, they'd be expecting me at shift change so have my husband bring me clothes, grab dinner and get to the hospital. She also talked to the head ER doctor that night and told him exactly what she expected my treatment to look like. Turns out, he did not appreciate her pro-activeness, but how grateful I am for this fierce woman who fought for me. I affectionately call her my bulldog and owe so much to her.
On the way to the hospital, I had to make a few phone calls that were difficult, at best. I had been texting Justin during my appointment, he was on his way to meet me. I called my kids who were 15, 13 and 10 at the time and told them I had MS, I was going to be ok but needed to be hospitalized and I'd see them soon. They were emotional, but I reassured them all would be well and dad would be home later than night. I called my parents, who live in the same town. I'm their oldest, only daughter and favorite child (ha, ha if my bros read this). They were shocked, very concerned and met us at the ER.
The moment I walked in, the ER receptionist asked if I was Rachel Robins and immediately took me to triage. For being newly diagnosed, well, not even "officially diagnosed" yet, I was remarkably calm. I had that same peaceful feeling from the heavens that I'd be ok. So, I started cracking lame jokes keeping my husband and parents from dissolving into tears. I was also texting my principal and writing sub plans, assuming I'd be out for a day or two.
The ER people were so compassionate and kind, how I appreciate compassionate medical personnel. Now, the ER doc that my doc had talked too was initially not so kind. He swept in the room with brusqueness and asked why I was there. I gave a synopsis and I got a "yeah, Grace called and told me what to do."
Whew? Issues much man?
This was followed by:
"Well, you've only got spinal lesions, might not even be MS." he flippantly remarked
"Read my scans" I replied--probably sounded a little irritated by this time, "I have lesions in my brain too, it's MS and I need to be admitted for steroid treatment."Grace Dr. Paradela had already given me heads-up on this guy and told me NOT to leave without being admitted. He huffed out of the room.
A while later, he came back, contrite.
"Yeah, I apologize, you do have MS and I'm admitting you. We'll start Solu-Medrol
treatments tonight." he explained. It was official. I had MS, an incurable, mysterious, scary disease.
"Told you so" I muttered under my breath as I faced Justin and my mom and dad.
My parents, bless them, were distraught. None of us knew much about MS. My parents were picturing ALS and were afraid of what this disease would do to me and how quickly it ravage my body.
My husband and dad gave me a priesthood blessing. This is something we do in my church. Click on link for explanation. I continued to feel incredible peace.
I sent my parents home until the next day and Justin stayed with me for a time as I got settled in the overnight observation wing. My friend, Kara, who is a medical assistant, got word of what happened and came in with her husband to visit. She had me laughing and distracted me that evening. I'll always appreciate that visit. She also worked in the office of the best neurologist in town. She promised me she'd do all she could to get me in quickly--and man, did that girl deliver!
When she left, there was a stillness in the room and Justin and I considered those marital vows "in sickness and in health" now meant something real. He reassured me of his love and that we would conquer this together. A nurse came in and gave me my first dose of the steroid infusion and I sent Justin home to our kids to be mom and dad.
Ok, now I know steroids. After having years of sinus issues and 2 surgeries, as well as yearly bronchitis/pneumonia, steroids, like prednizone, were my friends. They gave me crazy energy, and drastically reduced inflammation, which almost made the side-effects like headaches, moon face, white skin, etc. bearable. Solu-Medrol is like pretnazone on steroids, ha ha. That stuff is potent. Because of my emergency situation, I received night doses of the 'roids, which led to sleepless nights. However, that first night, I was pulsating with energy, feeling calm and started researching MS. What MS was, what the four types of classification are, how it's treated, how lifestyle and diet can make a tremendous difference, etc. I wanted to at least have a base of knowledge when we met with the neuro consult the next day. Those hours of research did give me a lot of information and I prayed for guidance to know what I could do to fight this disease.
I had already stumbled on MS Diet for Women (now MS Diet for Life) in my earlier googling. This remarkable woman, Kim, is an advocate for fighting MS drug free. Now, I didn't feel right about going drug-free quite yet, but everything she researched and wrote about nutrition absolutely rang true. I was already gluten-free and was prepared, as soon as I got home, to go off caffeine, dairy and sugar. The evidence was compelling and again, it felt right.
The Times I Felt Like Harry Potter
I'm pretty open-minded, so I started to pursue traditional and non-traditional healing and diagnosis. I visited several chiropractors included a holistic one who wanted me to wear yellow glasses to cleanse my liver...this is when we parted ways. Nothing helped the pain and symptoms I was having. Nothing made sense and no one could put the pieces together. I felt like I was crazy.
My Diagnosis Misdiagnosis
Fast forward to December 2013. I had been seeing a pain doctor, who discovered my neck was indeed messed-up and had me on traction and physical therapy to try to repair the damage. When I could slap both hands on my thighs and feel electrical sparks radiate throughout my body and bend my neck and have the same sensation, he became concerned and ordered a MRI. At the time, he told me it may indicate MS, but it was very unlikely so he wanted to MRI my brain because he hold me that lesions in two places may indicate MS. Here is what the report actually said:
Impression:
T2 hyperintense lesions within the posterior aspect of the
spinal cord and possibly within the pons. Appearance is most
compatible of multiple sclerosis. MRI of the brain is
recommended in addition to neurology consult.
The brain MRI was without contrast (major misstep--always order contrast--they show lesions!), looked fine and he said my spinal lesions were just an anomaly--nothing to worry about. In hindsight, I should have been more proactive, asked to see the reports, get a second opinion, see a neurologist. However, I just didn't know what I know now. He was a nice man, a friend of my parents. I didn't question. Sigh. Hard lesson learned.
The Chiropractor Who Cared
Time moved on and my symptoms continued to ebb and flow. I became busy with parenting, having leadership roles at my school and church, teaching full time, etc. PT with the pain doctor was leading me down the road to nowhere and my neck pain, numbness, etc. continued to thrive. I also began to experience intense joint paint throughout my body that would come and go unexplained as well as emerging bowel and bladder issues. I prayed, I visited with other people, I researched--anything to figure out what was off. One day I was struck by a conversation with a friend in my education program who told me of a chiropractor she went to, and her husband worked for, who was amazing and didn't do physical manipulation (which I hate about chiropractors). His name was Dr. Spencer Anderson with Lifestyle Restored: Whiplash Center of Utah I called and made an appointment to see him in April of 2015.
Dr. Anderson was kind, empathetic and sharp as a tack. He was totally invested in giving me pain relief and finding out what was wrong. His easy manner put me at ease, and off we went. After imaging, he found that my neck, due to the trauma and subsequent bad treatment, was curved the wrong way: kyphosis-yikes! We began a regiment of readjustment, stretching, a theraputic neck pillow (I complained about this one for 2 weeks until magic happened and I could finally sleep at night). It was a process of retraining my body and my neck. That summer, I clearly remember telling Dr. Anderson that I was getting through each day pain-free, but couldn't shake the joint pain and what I was calling flank pain where the sides of my back would just ache. I now know it's referred to as MS Hug. He thought about it and asked about gluten. He said that some people who are gluten-sensitive have joint pain and fatigue similar to what I was describing and encouraged me to go off gluten 100% and see what happened.
Current Update: Interestingly enough, there is evidence that Kyphosis can lead to demyelination. My biggest lesion is right where my spine is sitting unnaturally close to my neck. Dr. Anderson and I are exploring the possibilities here.
I trusted him and he'd never steered me wrong before...so, after a long break-up letter to gluten and weeping over the now-forbidden bread, I became GF. I'll do another post about gluten-free living, just know it's totally manageable and totally worth it. Dr. Anderson also recommended that I see Dr. Grace Paradela, Internist. He had met her and found her to be not only very intelligent but a gift physician who could catch problems and think outside of the box. This conversation set me on the trajectory to diagnosis--which made all the difference!
That Fall I had pulled a muscle in my back and was unable to move. It was the most horrific pain I've ever had. My husband hauled me (literally) to Dr. Anderson, who made it possible for me to walk again and again strongly encouraged me to get into Dr. Paradela. He felt like there was more going on in my body than just neck issues and knew I needed another doctor to weigh-in and approach from a different angle. Thank the Lord for humble, intuitive physicians.
Finding the BEST doctor around
When you're immobile, you'll promise anything. So shortly after the back was in working order, I made an appointment with Dr. Paradela. One of my closet friends was a patient of Paradela, so I already knew to expect a feisty, pint-sized doctor. However, no words prepared me for the force of nature that is Dr. Paradela, and I say that with the greatest amount of respect and love! She flat-out told me I was overweight, not exercising enough and something was wrong with me. It was all true, and I was ready to do something about it. Blood results showed I had an extremely low functioning thyroid and wasn't absorbing vitamins...like not at all. This was not only preventing healthy weight loss, but causing all sorts of other issues. Paradela also suspected I might be have celiac disease because my vitamin levels were rock bottom. I also had frequent bowel issues, unexplained rashes, fatigue, joint pain, leg cramps, etc.
Over the next year I lived without eating gluten and my vitamin levels were starting to rise. I added a few vitamins as well and started to have less fatigue, less leg pain, better sleep quality, etc. I was able to slowly start to lose weight too. I'd still see Dr. Anderson when my back or neck felt weird and I started regular massage therapy at his office with Debbie, who is excellent. However, the numbness, join pain and a host of other symptoms continued.
That Time I Couldn't Feel My Legs
In October 2016, I woke up one morning and was numb from my calves down on both legs--completely bilateral. Weird. I stumbled a little, but had full mobility and didn't think much of it. Crazy I know. However, I was having numbness all of the time that would come and go, usually not lasting more than a day or so. Numbness that would spread through my face, or down my legs, or hands or pulsate in a specific area. I attributed all of this to my neck injury years before. It's amazing how you can adjust and accept weird for normal.
This numbness was different, it didn't go away. I went to Dr. Anderson first. He tried everything he had, but the numbness didn't dissipate. By this time, I had already turned to Dr. Google and kept popping up on MS sights, which scared the hell out of me. It was mid November and I was preparing to fly to Atlanta with my teacher friends to attend a conference. My big concern was if I could get proper blood circulation from my legs. Dr. Anderson had a quiet moment and looked at me and mentioned MS--saying I should get an MRI quickly and see what was going on. His observations confirmed my own research and I made an appointment with Paradela right before I left town. Paradela thought maybe my calves were seized up and tried dry needling. She told me to prepare to feel pain while she tried this. I laughed and told her I couldn't feel anything...she didn't laugh back. I mentioned off-hand that an MRI years ago showed spinal lesions, but my doctor at the time said they were no big deal. Paradela was shocked and gave me crap about not saying anything sooner. She approved me to fly and ordered the MRI to happen right when I got back.
The Calm before the Storm
I was off to the National Council of Teachers of English conference in Atlanta with three of my closest friends. They knew what was happening and did a good job of keeping my mind off of it. I am a woman of faith and just prayed that I would know for sure and that I'd be ok. I won't lie. I was scared but trusted the God would guide me as He had before and all would be well.
Atlanta was great. I was with friends who made sure we hit all the gluten-free restaurants and nerded out with me at the convention. Flights were fine and I came home the Sunday before Thanksgiving. I taught Monday and Tuesday--started to feel a little jet-lagged then the day before Thanksgiving started to have extreme fatigue. Thanksgiving was scary. We live by both sides of our family, so we typically do two Thanksgivings. One early in the day, my family. One later in the day, my husband's family. I barely lasted through Thanksgiving with my family. My legs started to feel like concrete, the numbness was everywhere and I felt like I was coming down with a horrid case of the flu--or something. I ended up going home and staying in bed that weekend. I had never felt so sick or scared. The following Monday I made it to work, feeling a little better and looked forward to Wednesday's MRI.
The LONGEST MRI of my Mortal Existence
Wednesday, November 30, 2016. After teaching a full day I walked into Dixie Regional Medical Center with a big smile on my face to get my MRI. The radiologist looked at my charts.
"You here for a follow-up?" he asked
"No," I answered, confused, "My legs have been numb for 6 weeks or so--just coming in for a diagnostic."
"Right," he answered.
I climbed in the dreaded MRI tube and tried to not let the mind-numbing thumping of the machine get to me.
Everyone has a talent--mine is time. I can estimate time and tell you what time it is, almost on the dot, no matter where I am. Previous MRI's had been about 45 minutes. When I could tell an hour passed, I started to move my eyes to get their attention.
"Rachel, is something wrong?"
"No, aren't I finished though?"
"Um, no, we're not even halfway."
"Oh..."
Paradela had ordered MRI's on my brain, lumbar spine, thoracic spine and cervical spine--with and without contrast--she wanted to know for sure what was happening to me. 2 1/2 hrs. later I came out of the tube and sat up.
The very kind radiologist sat next to me, apologizing for the length.
"When do you see your doctor?" he asked
"I've got an appointment next week." I replied "Nothing to worry about."
"Yeah, you should get in soon." he softly answered.
Now, I know that radiologist can not diagnose and he said nothing that would violate his code of ethics, but his voice was tinged with concern and I took note.
When I Found Out I Had MS...and have for years (see misdiagnosis above)
Later that night I felt an urgency to get answers. I logged on to my patient portal where our local hospital stores all of your medical records. To my surprise, my MRI's had already been analyzed, read and results were posted. It was 10pm at night, my husband was on his way home from somewhere, my three kids were in bed.
I skipped the doctor-speak and read the "impressions" section, which is in layman's terms. Only two phrases stood out.
"New, active myelitis lesion within the distal thoracic cord at the T10 level consistent with history of MS."
"Active white matter plaque in brain, consistent with MS."
I cannot express the fear and horror that filled me at that moment. MS? All I could see was my brain eroding, being in a wheelchair, losing everything that defined me. Would I lose my personality, my teaching career, my ability to mother, to walk?? Would I lose me? It was terrifying. I started to sob, heaving, keening sobs. I cried like I have not cried since.
My husband walked in the door. Hearing me weep, he rushed in. Between sobs I told him what I found. He just held me and we cried together. He assured me I'd be ok and he would always be here to support me. We prayed, cried some more and I feel asleep praying to God to carry me through this and give me peace and strength. I finally slept as tears soaked my pillow.
Walking by Faith
I abruptly woke up the next day. My first thought: "I have MS". My second thought: "I'm going to be ok." God gave me peace. The crippling fear I had the night before was gone. The exchanges during my MRI made sense. The guys were seeing my old MRI's as they took new images and saw, plainly, that it showed MS since 2013.
Sometimes truth, even awful truth, is a type of comfort. Now, it made sense. I wasn't nuts, I wasn't a hypochondriac, I had multiple sclerosis. A very real disease that I knew nothing about.
When I'm faced with difficulty, my default is to pray and seek guidance from my Father in Heaven. A year and a half ago, I went through something terrible which solidified my relationship with the heavens. That morning I simply prayed, thanking God for the peace and asking what to do next. Get into Paradela, today was the quiet answer.
My Bulldog Doctor
My husband and I embraced, I told him my plan and headed to school. That morning, I gathered my principal and teacher friends in the workroom in my hall. I told them what I had found last night. These magnificent women surrounded me, offering me nothing but love and support. I called Paradela's office as soon as they opened.
"So, I don't have an appointment until next week (it was Thursday when I called), but I saw my MRI results from yesterday. Yeah, I have MS and wondered if Paradela wanted to see me sooner." I asked in a calm, collected voice.
The receptionist gasped and said she would forward the message and they'd call me back.
I received a phone call shortly thereafter asking me to come in as soon as school was over. Unbeknownst to me, that call set off a chain of events that would be life-changing for me. I still get teary as I write about it now.
When I saw Paradela that afternoon, she was straight-forward, calm and had my back. She explained that her assistant told her my diagnosis and she had been working for me all afternoon. She was shocked I had MS and that I read my reports already. Through her login, she couldn't even access the scans. Working her magic, she got her hands on them, consulted with the hospital neurologist and made a game plan. My largest lesion was where it could have caused temporary paralysis and I need steroid infusions immediately to bring down the swelling. The fastest method of treatment was to be admitted to the hospital and start the 3 day infusions that night. Paradela told me she called ahead, they'd be expecting me at shift change so have my husband bring me clothes, grab dinner and get to the hospital. She also talked to the head ER doctor that night and told him exactly what she expected my treatment to look like. Turns out, he did not appreciate her pro-activeness, but how grateful I am for this fierce woman who fought for me. I affectionately call her my bulldog and owe so much to her.
It's Going Down for Real!
The moment I walked in, the ER receptionist asked if I was Rachel Robins and immediately took me to triage. For being newly diagnosed, well, not even "officially diagnosed" yet, I was remarkably calm. I had that same peaceful feeling from the heavens that I'd be ok. So, I started cracking lame jokes keeping my husband and parents from dissolving into tears. I was also texting my principal and writing sub plans, assuming I'd be out for a day or two.
The ER people were so compassionate and kind, how I appreciate compassionate medical personnel. Now, the ER doc that my doc had talked too was initially not so kind. He swept in the room with brusqueness and asked why I was there. I gave a synopsis and I got a "yeah, Grace called and told me what to do."
Whew? Issues much man?
This was followed by:
"Well, you've only got spinal lesions, might not even be MS." he flippantly remarked
"Read my scans" I replied--probably sounded a little irritated by this time, "I have lesions in my brain too, it's MS and I need to be admitted for steroid treatment."
A while later, he came back, contrite.
"Yeah, I apologize, you do have MS and I'm admitting you. We'll start Solu-Medrol
treatments tonight." he explained. It was official. I had MS, an incurable, mysterious, scary disease.
"Told you so" I muttered under my breath as I faced Justin and my mom and dad.
My parents, bless them, were distraught. None of us knew much about MS. My parents were picturing ALS and were afraid of what this disease would do to me and how quickly it ravage my body.
My husband and dad gave me a priesthood blessing. This is something we do in my church. Click on link for explanation. I continued to feel incredible peace.
I sent my parents home until the next day and Justin stayed with me for a time as I got settled in the overnight observation wing. My friend, Kara, who is a medical assistant, got word of what happened and came in with her husband to visit. She had me laughing and distracted me that evening. I'll always appreciate that visit. She also worked in the office of the best neurologist in town. She promised me she'd do all she could to get me in quickly--and man, did that girl deliver!
When she left, there was a stillness in the room and Justin and I considered those marital vows "in sickness and in health" now meant something real. He reassured me of his love and that we would conquer this together. A nurse came in and gave me my first dose of the steroid infusion and I sent Justin home to our kids to be mom and dad.
In The Wee, Small Hours of the Morning
Ok, now I know steroids. After having years of sinus issues and 2 surgeries, as well as yearly bronchitis/pneumonia, steroids, like prednizone, were my friends. They gave me crazy energy, and drastically reduced inflammation, which almost made the side-effects like headaches, moon face, white skin, etc. bearable. Solu-Medrol is like pretnazone on steroids, ha ha. That stuff is potent. Because of my emergency situation, I received night doses of the 'roids, which led to sleepless nights. However, that first night, I was pulsating with energy, feeling calm and started researching MS. What MS was, what the four types of classification are, how it's treated, how lifestyle and diet can make a tremendous difference, etc. I wanted to at least have a base of knowledge when we met with the neuro consult the next day. Those hours of research did give me a lot of information and I prayed for guidance to know what I could do to fight this disease.
I had already stumbled on MS Diet for Women (now MS Diet for Life) in my earlier googling. This remarkable woman, Kim, is an advocate for fighting MS drug free. Now, I didn't feel right about going drug-free quite yet, but everything she researched and wrote about nutrition absolutely rang true. I was already gluten-free and was prepared, as soon as I got home, to go off caffeine, dairy and sugar. The evidence was compelling and again, it felt right.
Feeling Loved...Knowing Who Really Cared
Frankly, my time in the hospital was blur. I was hospitalized for 3 1/2 days, finished the Solu-Medrol and started to feel the effects of going off of it without taper. The sleepless nights and reality of this diagnosis started to hit. Even though the deep, abiding peace didn't leave, I ran through a veritable gambit of emotions.
I had a spinal tap, which confirmed my diagnosis. As I lay curled in the fetal position as they extracted spinal fluid, things felt very real.
I met the hospital neurologist, who explained the disease and told me to get into a neurologist ASAP.
Vocational Rehab paid me a visit, as is par for the course. They asked me if I could get out of bed by myself, if I could shower myself, if I could walk in a straight line. I had been 100% mobile. Yes, a host of symptoms and days when I felt like crap, but having them ask me if I was functional made the thought of not being functional so real and terrifying. I lost it, heaving sobs as Justin stood by and comforted me.
I had a very tender conversation with my dad one early morning when he stopped by on his way to work. My dad is unfailingly optimistic. I like to think I got a big slice of his inner sunshine. But this happy man broke down, weeping for his daughter. I'll never forget this moment with him and how much I felt his love.
Likewise, a tender time with my mom who was so worried. I expressed my faith and remember telling her that I had lesions on my brain and spine, but I didn't have lesions on my spirit and no matter what happened, I'd still be me and God would carry me. My mom's been unfailingly supportive. She immediately went out and bought books for me, talked to people with MS and continues to help me in any way she can.
The second night, I couldn't sleep and I started to cry. The reality and the steroids were having a drastic effect. I called my best (sister-from-another-mister) friend, Kym, who stayed on the phone with me for hours in the middle of the night so that I wasn't alone.
When I couldn't sleep I sang, I prayed, I felt like both my grandmas were with me. Two very strong, loving, compassionate women who I loved and missed so much. The veil was thin that night.
I had the same night CNA the majority of the time. She comforted me, we talked and bonded. We later found out she actually lives really close to me with her parents who are in my church congregation. Small world.
My little brothers--all over 6 ft. now all showed up to visit me, comfort me and make me laugh. We don't always see eye-to-eye, but man, when I needed them there were there and it meant the world.
My mother-in-law came. I didn't expect her to. My father-in-law had passed earlier that year and had spent considerable time in the same hospital suffering from an intense and rare thyroid cancer that took his life in a horrible manner. She had avoided the hospital ever since and I totally understood why. However, she braved her own trauma and memories to come see me. We both sobbed as she embraced me and told me she loved me. It was another tender time I'll never forget.
My dear friends. So many came in bearing Diet Coke (I was told to drink A LOT of caffeine after the spinal tap, then I'd be done with soda forever on my new eating plan), hugs and laughter. A friend from childhood whose father was hospitalized with sepsis stopped by and visited. Friends from school, church, community. I was so moved. I had no idea I was so loved. A friend from a previous ward who has MS messaged me one evening and we had a great conversation about the reality of MS. This exchange really grounded me and normalized MS for me. My husband and I's best couple friends came and lifted my spirits and comforted my husband. My sweet girls I worked with at church texted endlessly. The outpouring of love goes on and one. I posted online and received a lot of support from friends and family across the country.
I received the rare gift of seeing who cared, and who really didn't, and feeling complete love and gratitude.
I received the rare gift of seeing who cared, and who really didn't, and feeling complete love and gratitude.
My husband was my rock. He brought in the kids. We talked to them about the disease, but I was still Mom. I came up with all sorts of MS jokes and tried to keep things as normal as possible. The big truth to communicate was that I wasn't going to die. They did, and still do, take the entire MS things in stride and are there to help when I need them.
Home Sweet Home
By the time I came home, I was extremely weak from the steroids. The hospital didn't taper me down from Sol-U-Medrol and it was agonizing. My head pounded, I could barley walk and my eye sockets ached, it was extraordinarily painful and scary. Numbness & the Thanksgiving scare aside, I actually felt pretty good, so it was startling to find out I had MS, be hospitalized then come home feeling sickly.
My first concern was school. As a teacher, you take an occasional sick day, you don't just drop off the face of the earth. Sick days are limited too, so I was more than concerned. My principal, Kalyn Gubler, is a dear friend and mentor. She had been checking on me the entire time, let me know how to apply for FMLA from my school district and had arranged my favorite sub, and friend, Scott Morgan to take over while I was gone. Scott was so generous with his time and made the transition easy for me as we started trading off throughout the day. He'd work in the morning, I'd work in the evening, etc. He even had my 150 students write get well cards for me and hand delivered to my home. I sat at home and just sobbed.
So many people surrounded me, supported me and loved me. It was a season of healing and miracles. There is much more to write, but I promised myself I'd publish the blog this month (March 2018), so I'll continue to add as I go!
So many people surrounded me, supported me and loved me. It was a season of healing and miracles. There is much more to write, but I promised myself I'd publish the blog this month (March 2018), so I'll continue to add as I go!
Life Today
I feel like it took me a good year to make peace with this and fully accept the diagnosis. I am in remission and my lesions have shrunk some! I have had flares (about 1 every 3 months), but no relapses. I believe this is in part to Copaxone, diet (including vitamins and supplements) and exercise. More on this in other sections.
There still isn't a day that I don't think about the fact that I have MS. It still blows my mind.
A future with MS terrifies me. I have to live day-to-day.
I make my disease-management decisions based on faith, research, and more faith.
I've had to change my lifestyle...drastically. I went through an agonizing trial a year before, so I was already learning to live a more authentic life and deal with stress in a healthy way. This really prepared me for my diagnosis. I live day-to-day--I CANNOT let myself worry about the future or live in the past. I say no, I rest, I don't go out all the time and I have to balance my energy.
I feel like managing MS consumes me, so I get overwhelmed faster than I've ever felt and I've lost a little of my multi-tasking mojo.
I suck at reaching out to others with MS--I get scared of what I see in other people. I'm working on this one.
I still teach full-time, and plan on continuing for years to come.
I'm active, not a triathlete or anything, but I do move daily and am planning on doing more.
I'm unfailingly positive, because negativity wipes me out.
I joke about MS with my family--especially my kids--but only Justin sees the fear that I still deal with.
I'm very open about MS and appreciate when people ask me things instead of just assuming.
Yes, I travel. It's tricky--I'll do a post on this one. Sometimes I feel fine after, sometimes I flare--which sucks.
Most days I feel pretty good and don't feel like I have MS. When I do feel the MS, I get really discouraged and irritated.
I do hope there is a cure for this in my lifetime & I'm encouraging all children in my life to go into science and figure this out!
My faith in God and my Savior, Jesus Christ, absolutely motivate all I do.
I travel, I zipline & act goofy:)
Biking with my fav buddy.
Teaching 7th grade...my happy place!
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