Since I was 14 years old, I struggled to maintain my health, and my ability to lead a normal life. When I was 14, I started having muscle spasms in my hands and upper arms. Sometimes these spasms caused me to drop things. I gained a reputation for being incredibly clumsy. My parents and doctor chalked it up to stress and that was the end of things. I did my best to ignore the muscle spasms and didn’t say too much about them. When I was 15, I was diagnosed with pretty severe asthma and started taking inhaled steroids and albuterol inhalers. The diagnosis and inhalers were a minor miracle in my world because I had trouble breathing for as long as I could remember. By the age of 18 my asthma worsened to the point that I needed Medrol dose packs, AKA short-term steroid treatments every couple of months. By 21 I was taking every- other-day prednisone therapy in order to breathe. Even on daily prednisone, I still landed in the Emergency Room and was admitted to the hospital every two or three months because of uncontrollable asthma attacks. My pulmonologist couldn’t tell me why my asthma was so bad, only that it was “most severe.” It was difficult to hold down a job while in the hospital so often and I bounced from one job to the next in between hospital visits.
During these struggles with asthma, the muscle spasms continued and were accompanied by intense, breath stopping pain around my chest. Sometimes instead of pain, I felt a sensation of being squeezed through my ribs. It was so tight I could not breathe. My doctors attributed the pain and squeezing sensations to asthma symptoms, and treated them as such. Several times a week the balls of my feet would tingle and hurt. It felt like when a limb is coming back from “falling asleep.” I spoke to my grandmother about it, and she informed me that diabetes runs in our family, and I should get tested immediately. So, off to my doctor I went to explain this odd, new symptom. It was obvious that my doctor did not take me seriously, but he did a diabetes test anyway. The test was negative. I did not have diabetes. My doctor suggested a good therapist, and sent me on my way. I also had periods of what is now called “brain fog”. These were times when I was unable to think clearly – sometimes words that were spoken made absolutely no sense. Other times I could not remember what I was doing, or could not recall a simple fact. Keep in mind I was not even 21 years old yet!. I spoke to my doctors about theses symptoms that came and went, thinking maybe they were a side effect of the asthma medications I was taking. The doctors assured me that I was fine, and that these were not medication side effects. Again, I was referred to psychologist. But, I knew these problems were not in my head. They were real, physical symptoms and no one would take me seriously.
Life went on in spite of the medical problems. I landed a job working with Deaf and Developmentally Disabled adults. I learned ASL, and started interpreting for the Deaf Community. One day I realized I could not make out the hand shapes of the people I was Signing with. Their hands looked blurred and signs ran together. After a few weeks of this, I had to stop interpreting because I could not make out what people were signing to me. I went back to working in group homes and met my future husband. When I was 22 I became pregnant with my first child. Throughout the whole pregnancy I felt wonderful. I experienced morning sickness, but other than that, I was healthy like never before. My asthma improved and I came off all the meds except albuterol inhaler when I absolutely needed it – and I rarely needed it. I was astounded at how strong and great I felt. The pregnancy passed way too quickly and my daughter was born February 1994. Like any new mother, I was completely in love with my daughter (and all these years later, I still am!). Her first 6 weeks was filled with they typical “new mom” issues – learning to breastfeed, not enough sleep, lots of diaper changes, negotiating baby-care duties with my husband ect. . I still felt strong and healthy.
Until I didn’t.
Shortly after 6 week mark, I had an uncontrollable asthma attack. My albuterol inhaler didn’t work, my SVN machine meds didn’t work. I called my doctor and he told me to go into the emergency room. As I was preparing to leave the attack took a turn for the worse, and I was pretty sure I couldn’t make it down the stairs and to our car. I had my husband call an ambulance. The last thing I remember was looking at my husband holding our 6 week old baby and telling myself I was not going to *&(&ing pass out.
I woke up two days later in the hospital, on a respirator, my chest very sore, and my arms and legs tied to the bed. Over the next several days my hospital team and I tried to determine what caused the asthma attack that had almost killed me. About 10 days later, I left the hospital with several new prescriptions and the knowledge that I was very lucky to be alive.
Within 7 days I was at my doctor’s office with another asthma attack. I wasn’t even done with the Medrol Dose Pack yet, was still taking SVN treatments every 6-8 hours, and I was having problems breathing. My pulmonolgist was a great guy.. a GOOD doctor. A year later, when he left Arizona to practice in Michigan, I was very sorry to see him go. But, this day, he looked at me very seriously and told me, “You are on the strongest asthma meds available today.There isn’t much else I can do for you. Let’s look at other options.” He didn’t have any other suggestions, really. He did refer me to a local doctor who used orthomolecular medicine, but when I investigated I learned that my insurance wouldn’t cover such an “experimental” treatment. If my asthma were to improve, I was on my own.
During this time, and for several months afterward, I experienced chest pain, numbness in my left arm and leg, massive migraines, dizziness, and a host of other symptoms. My pulmonologist said it was probably side effects from the meds I was taking, and my general practitioner thought it was all in my head. My husband at the time assumed I was making stuff up, and our marriage suffered. When my oldest was 1-year-old, I became pregnant with munchkin number 2.
All the symptoms I had during the past 11 months disappeared. My asthma improved dramatically and I was able to come off all the meds again, except the occasional albuterol inhaler. I felt wonderful throughout the entire pregnancy. My 2nd daughter was born in the beginning of October, and I started having serious pain by Halloween. Simple things, like holding a fork, or buttoning a shirt became the source of pain so intense I could not help crying. I had never felt pain like that…. it was more severe than the pain of natural, unmedicated childbirth. The second round of unexplainable health issues led to the end of my first marriage.
I continued on as a single mother of two. I worked full-time while I homeschooled and raised my girls. I still experienced debilitating pain. Occasionally I would become so dizzy I could not stand.Other times I lost the hearing in my left ear, or the feeling in my left leg. Sometimes I stuttered, or my vision changed. All these random symptoms which seemed to be unrelated would come and go. Sometimes they lasted for hours, other times for weeks.
I went from doctor to doctor looking for answers hoping and praying that someone could help me. Of course with symptoms like that it’s difficult to hold even an easy job. But, I had a physically and emotionally demanding job. I managed group homes for Developmentally Disabled youth and adults. I would worked as long as symptoms allowed me until I was either let go or forced to quit because symptoms made it impossible to fulfill my job duties. Once I quit a job because I was so exhausted that it was impossible to even get out of bed – Crying took too much energy. My kids and I struggled financially because of my unnamed illness. Some people called me lazy, my doctors thought I was trying to game the system. But I was none of those things. Anytime I lost or quit a job, I threw myself into my writing, and supported my kids writing for websites and local businesses. My kids never went without because I was determined that this “oddball neuro thing” I had would impact my kids as little as possible.
One morning, I woke up and my left leg was completely numb, otherwise I felt perfectly fine. I had never felt anything like this before, and was scared. I called my doctor and he sent me to the emergency room. The ER doc blindfolded me and stuck the business end of a syringe into my leg to see what I could feel. He kept asking me, “Do you feel this? How about THIS” I felt nothing each time. When the doctor finally took the blindfold from my eyes, I saw pin prick holes on every square inch of both my upper and lower leg, except my knee. I didn’t feel anything at all. The ER doctor admitted me to the hospital for tests and observation. Among the tests, they ran an MRI of my brain.
About twenty-four hours after the MRI a neurologist came to see me. “I think you have Multiple Sclerosis, but I can’t be sure until/unless you have another episode.” She explained what MS was, and I saw my life, and the lives of my daughters flash before my eyes. The neurologist discharged me with instructions to call her office if I had any more symptoms, if the numbness did not go away in 14 days, or if anything else went numb.
Once home, I was both relieved and terrified. I got on-line and read everything I could read about Multiple Sclerosis and autoimmune disorders in general. Understanding this thing called MS helped a little bit.
When the next set of symptoms hit— intense stuttering that left me unable to get words out at all, I had new insurance, and a new doctor. The stuttering started while I was at work, and my friend and co-worker thought I was having a stroke. She made arrangements with our supervisor to take me to the emergency room where I was admitted almost immediately. This was a different hospital in the same city as my last hospital stay. I asked the nurses to have my MRI transferred so the doctors here could look at it. They refused. I told my medical team what the neurologist had said a few months before, and requested they call her. They told me my new insurance wouldn’t cover her, and they very much doubted I had MS because I was too young. Because I wasn’t even 30 years old yet they refused to even consider the idea, or look at my 6 month old MRI. I was told it was likely stress, and I should look for a less demanding job. I was discharged the next day with a prescription for a sedative. I never filled the prescription.
I continued to deal with these issues with no medical support at all. I did some research on-line to see if there were any non-medical ways to cope with Multiple Sclerosis. I didn’t find much at that time, but I did make some changes to my diet based on what I read.
Life went on. I dealt with these issues the best I could, alternating between managing group homes and writing full-time as I was physically able. At this point, I has some sort of symptom every day.
At some point, my left leg started giving out on me. I would go to take a step, and that leg would give out and I ended up on the ground. It wasn’t a regular thing, but it happened often enough that I became nervous about going out.
In 2002, when my son was born, I was managing on my own fairly well in spite of the daily body glitches that occurred. I turned 32 years old one month after my son was born. I still went back and forth between managing group homes and writing full-time. We were not rolling in money by any means, but my kids had everything they needed and I was not on any sort of state aid. During my pregnancy with my son, I again felt wonderful. I worked full-time, in a group home right up until the day before I delivered. I even walked the mile to and from work most days. And..again, during the postpartum period my body fell apart. This time it was massive pain, limb numbness, asthma problems, and exhaustion. I was so ill that I was unable to return to work when my maternity leave was over. Again, I spoke to my doctors about the possibility of Multiple Sclerosis. I suggested they look at the MRI from a few years ago, and speak to the neurologist who said she thought I had MS. And…again, my medical team refused. There was nothing wrong with me, they said, except postpartum depression. They gave me Prozac and sent me on my way. The Prozac didn’t help at all, and so I stopped taking it after a few months. Slowly, my body regained it’s energy, the pain eased, the numbness went away, and the asthma improved a bit. Although, I never did regain all my feeling in my left leg, the left leg gave out and I fell a lot more often, and I could not feel hot or cold in my hands. Still doctors said there was nothing wrong with me. I was only 32 after all — Still to young to have Multiple Sclerosis, or any other neurological disorder.
Life went on. I took a weekend job at a group home for troubled teen boys. Most of the boys in this home had been to juvie, or had other legal problems and violent pasts. There was no lifting, and I didn’t have to intervene with behaviors. It was much less physically demanding than working in, or managing D.D group homes. I liked weekend hours because I worked a full 40 hour week between Friday and Sunday. That allowed me to be home with my kids all the time during the week, and I could find time during the week supplement my income with writing. I only had to hire a babysitter for the weekends. I lived in a college town. It wasn’t difficult to find an inexpensive babysitter. I was only the weekend relief staff, so it was a low stress job. I still had daily symptoms to deal with. Everything I tried to accomplish took four times as much energy as it should have, and I was in constant pain. Every day I took naps with my son, and I managed. Sometimes not well, but I managed.
Things continued. My doctors still insisted there was nothing physically wrong with me. I knew differently, but couldn’t do anything about it.
When my son was about 18 months old, I met my current husband. We met on-line (Yahoo Personals, if you really want to know)and hit it off immediately. We spent months and months talking through email, chat and on the phone before we finally met in person. By the time we finally met, we were the first person each of us spoke to in the morning, the one we talked to the most, and the last person we spoke to before we went to bed each night. He emailed me regularly throughout the day and kept me updated on all his activities, and I did the same. I intentionally avoided meeting him because of my medical condition. I had not told him yet. I went round and round in my head about telling him. I didn’t have an actual diagnosis yet, and so many doctors thought it was all in my head. I was afraid to tell him, but at the same time I didn’t want to make our relationship “real” without him knowing I had this mysterious medical problem. So, finally one day through chat I told him everything. I told him about the weird symptoms, about that one neurologist who thought I had Multiple Sclerosis, and about the many who said it was all in my head. Then I told him I wanted him to read up on MS, to really learn about it, before we talked again. The next day, he sent me an email that said, “Okay, I’ve read about MS. I’m not going anywhere.” We met in person for the first time within a week or so after that, and we’ve been inseparable since.
In January 2005 we moved our families in together. He came with two children of his own, making us a blended family with five children. It was a fairly smooth transition for everyone, as far as those things go. But, it was stressful and I had a major increase in symptoms. Stuttering, numbness, dizziness, asthma, brain fog.. they all increased quite a bit. In April I became pregnant with our youngest child. Once again, symptoms improved. I developed pre-eclampsia and it was a difficult pregnancy, but the neurological symptoms were at bay. Our daughter was born in November of 2005. I had just turned 35 in September.
In January we moved to a bigger house. I was in the hospital the week we moved because of a serious asthma attack. Shortly after the move, my husband and I were lying on the floor watching a movie with the kids. When the movie was over, he picked up the sleeping children and carried them off their beds. I got up from the floor and got horribly dizzy. I made my way over to the computer desk and sat down. The dizziness cleared and I decided to check my email, since I was sitting there. I was unable to read the letters on the screen. It was seriously blurry. I looked out the big bay window on the other side of the room and realized that I couldn’t make out the sign for the Wal-Mart that had just gone up. We were on the second floor, and there was nothing in between our house and that sign except a goat pasture. I started to freak out just a little. My vision had flaked out on me before, but never to the point where I couldn’t read or make out items in the room. My husband moved the rest of the sleeping kids and came to see what I was doing. I told him what was going on. We decided go to bed and see what happened in the morning. When I got up from where I was sitting, I fell over. I had no balance. Nothing was numb, my legs didn’t give out on me, I simply could not keep myself upright. My husband helped me to the hall and then I made my way down the hallway by bouncing from wall to wall kind of like a pinball bounces between the stoppers. I made my way to our bed and sat down. I was overcome with vertigo. The room spun for a long time, and I couldn’t even hold my balance sitting up. My husband moved me to the middle of our bed, and we sat there, me holding on to him for dear life, until if finally stopped. When the vertigo stopped, I still could not make out items in our room. Nothing had edges, everything blurred into everything else. My husband’s face was even blurry. I got up to use the bathroom and still had no balance.
The next morning I was worse. My balance and vision had still not returned, and my fingers and hands didn’t want to work correctly either. My husband had to help me get dressed, because I couldn’t button my jeans or fasten my bra. I couldn’t make it downstairs on my own. I finally decided it was best to slide down on my rump. I was stuttering pretty badly, and the words I did manage to get out got mixed up. I tried to ask my daughter to bring me the phone, and it came out as “put the fork in the oven” or something equally ridiculous. I had pain every place anything touched my skin. Wearing my shirt hurt, my son giving me a hug brought tears to my eyes. When I put my feet on the floor I experienced intense pins and needles on the soles of my feet. Every nerve in my body seemed to be screaming at me. My husband called my doctor and we went right in to the office. My doctor determined I was not having a stroke, but had no idea what was wrong with me. He referred me to the local hospital with a request that a neurologist take a look at me. They admitted me and ran a lot of tests, including another MRI. My MRI showed “UBO” or Unusually Bright Objects. They sent me home with an appointment with another neurologist the next day.
The symptoms continued to worsen. Just air moving past me hurt. My pant leg touching my shin was extremely painful. Voices became difficult to understand. I forgot what I was doing while I was completing the task.
This neurologist had me do a walking EEG. They hooked up a bunch of electrodes on my head, gave me a pocket reading unit, and sent me home. He said he was checking for seizure activity. I went back 24 hours later so the doctor could unhook me and read the EEG. He said that was normal.
I developed occasional difficulty swallowing. It felt like my esophagus went into spasms.
Next was a VEP test. Visual Evoked Potential. When I went in for the test, I had no balance or stuttering issues. My vision had not cleared, I couldn’t even see well enough to read, I was in a lot of pain, but I could walk without help. They hooked up some electrodes to my head and had me watch moving images on a screen. The test took several hours, and I was fine during the test. When the test was over I left the office and went downstairs to wait for my husband. It took him roughly 5 minutes to get to me. I sat on an outside bench to wait. When our van pulled up, I got up from the bench and fell over. My balance was gone, so was my coordination. My husband came over to help me to the van. When I tried to talk to him the stuttering was back. We went home, hoping my balance and speech would return soon. In the van, I tried to use my asthma inhaler and missed because my coordination was so far off. When several hours went by, my husband called the neurologist’s office. The doctor told my husband that the VEP test could not have caused the balance,speech and coordination problems, but he sent me to the local ER “just to make sure.” The ER docs had no idea what to do with me or why I was there. One of the ER docs told me that he had heard of the VEP test causing problems in other patients with MS.
When I went in for my follow-up appointment a few days later, the doctor told me that I had Secondary Progressive Multiple Sclerosis. He offered me several medications to ease pain and stop muscle spasms, but said there was nothing he could to stop the progression of the disease. He suggested that my husband and I start interviewing nursing homes, because at the rate I was progressing I would need full-time nursing care within the next six months. I went home devastated. I had six young kids to raise. My oldest child wasn’t even 13 years old yet, and they were telling me my life was over. My husband helped me research MS on-line. We found stories of people who had recovered using natural methods and we found hope.
The rest, as they say, is history. Today, I have no daily symptoms, and the MS is not progressing. I am not cured. I have symptoms when I don’t follow my protocols and diet, or if I let myself get run down and exhausted. But those times are few and far between.
It’s been a long, hard road back. The road has been filled with successes, failures, setbacks and achievements. My two oldest children are adults, and off living their own lives. I homeschool the three younger kids and run my own small writing business. I am active in the SCA, and working to gain heavy weapons fighting authorization. I’m also learning to shoot archery. I play several musical instruments, I hike regularly, and I run on occasion. I’ve earned my Bachelor’s degree in Natural Health, Master Herbalist Certificate, Reiki Master/Teacher Certificate and Healing Touch Practitioner Certificate, and I earned my degree as a Naturopath.