More blessings than sorrows

We talk to people and in doing so we find that they become real and have more depth and heart ache than we can imagine. Getting to know people is like finding new things out about the world and myself, through their words. This is what I like about being here, living and breathing.

I was a healthy child most of the time, some allergies and lots of scrapes and bruises. I didn't start getting chronically ill until Grad school, in my mid twenties. I blame a lot of my health problems on the caustic materials I chose to make my art out of. I liked painting in oils and working with glass, hot and cold work.

I come from a long line of educated people, people in education and artists all the way back to the Hummels in Germany. My mother and Grandmother were both artists, my mother still is. My father is a professor, my brother too and I was before having children. I hope to get back to it some day, but I don't want to miss a second with my little ones. I do the odd mural and some Computer Graphic work. We have a nice house and great neighbors.

My past health issues have included Graves disease (Hyperactive thyroid), Thyroid Cancer, Ovarian Cysts, Endometriosis and Asthma. Most of these are common and genetic in my family. This past March (2007) I was diagnosed with Multiple Scleroses. I found through my Mom, this is also part of my family history.

I wish I could go back. Back before the word pale spots came out of the mouth of an ER Doctor and started ringing through my brain. Pale spots, pale areas, dead spaces, demyelization, autoimmune disorders, MS. My son proudly walks up to people and says, "My Mom has MIS." And I have to laugh. He doesn't even know how to spell it's acronym.

I had been tired since Annie was born in October 2004, always tired. My friend Susana had a child 3 months after I had Annie and she was bouncing back so quickly, but I was tired and narcoleptic in the afternoon. I would just lay on the floor and pass out for 15 minutes while Rory watched TV. I went to my GP and he upped my thyroid medication. I asked for a diabetes test, and it came back normal. I wasn't sleeping. I wasn't getting better.

I had weird symptoms, I wouldn't be able to walk for a couple of days and I thought my knee wasn't working. I couldn't remember things like numbers and people's names. I was always good at this when I taught, and I thought I had new Mommy brain. I lost color in my left eye, mostly the reds and yellows, so things were tinted bluish gray. My right side was numb. My mother told me I was sleeping on my side too much and my bed was too hard.

August 2006 I had a systemic reaction to allergy shots. I was driving home from the Hospital and I felt a rush of warmth down my back and my throat started to close. After a couple of ER visits, and EPI shot and steroids I started to recover. My son was so traumatized he had dreams I was dead and trying to bury myself. He would wake up his Dad in the middle of the night to get him up to help me because I was doing such a lousy job of piling the dirt on top of myself. He was 4 and he had to talk to a 911 operator for me while the ambulance drove to the house. He was so afraid I was going to die, I think he still is.

I was okay until Thanksgiving. My husband flew us to Indiana in a four seat plane. It was stressful because we hit some trees on the way to land and if we had been 10 feet lower we probably would have crashed, but the tree tops just grazed the bottom of the plane without any damage. The day after we got back we had the brilliant idea to cook our own Turkey, so we could have leftovers and we headed to the store. At the check out, unloading the cart, I felt dizzy and a huge pain running through my chest. I had a pain running from the back of my head through to my left eye and the numbness on my right side increased and tingled. My husband dropped me off at the ER so he could unload the groceries. I had been there so much he didn't even ask me what was wrong, he just seemed exasperated with me.

I thought it was a stroke.

The ER Doctor sent me off for an EKG and a CT scan of my brain. He came back in and made me stand, eyes shut and I fell over on to my right side. The Doctor stood by the door and did not look me in the eye, he shifted his weight uncomfortably and said that he does not think I had a stroke and there were no tumors. The CT scan showed white areas, or pale spots on my brain. He asked if I would like an MRI in the morning. I didn't even know what this meant. I stood outside the Hospital, in the cold, waiting for my husband to pick me up. I felt my life was changing, but I didn't know how much.

Let the testing begin.

The first person I called was my GP to get things straightened out, or at least explained to me. I was very teary and he looked at me and said, "Do you know how many people come into my office thinking they have some awfull disease or another?" He gave me a very rough Neurological examination. He pushed me hard to the left and the right until I was in tears again. Much later, when I was diagnosed he apologized for this. He referred me to a Neurologist. The diagnosis of MS comes after a long period of testing to eliminate other possibilities.

Just because someone has white areas of the brain, does not mean MS, so I was considered to have demyelization disease until other possibilities could be explored. I had an brain MRI and 3 separate spinal MRIs, The neurologist also ordered and MRA, EEG, a spinal tap, a TEE (fancy name for an ultrasound of my heart from my throat), blood tests, evoked potentials on my legs and eyes. Everything came back normal, except for the MRIs. I have 20-25 lesions on my brain (2cm and smaller) and some in a particular pattern called Dawson's fingers. I was then sent to a Neuro Psychologist for a Neuro psyche test and a Neuro Ophthalmologist for an eye exam. My Mom and Dad drove from Indiana to watch the kids while these test were going on, one on top of another, like some sort of mad race to the truth.

My Neuro Ophthalmologist was the first to unofficially confirm the diagnosis of Relapse Remitting Multiple Sclerosis. He recommended a wonderful MS Specialist at KU Medical Center and she finally diagnosed me from an additional MRI, 4 months after the first showing a new active lesion. I started my daily shots of Copaxone a week later and a battery of medications to help with symptoms.

There is no cure for MS, only management of symptoms and periods of remission. You might think I am crazy, but having the answers, even bad scary answers was better than being sick and in denial. My son is cute and dealing with it just great. He says, "I like that you are sick Mom. You lay and talk with me a lot more now." It has slowed me down a lot. Hopes of working outside my home have been put aside. My daughter likes to hide my cane so I can't get around. I found it under my bed today. I am 47 now now and some days I can't walk or even stand unassisted and I have to have a nurse come and hook me up to IV steroids for a couple of days.

Some days I loose sight in my left eye and neighbors have to help me drive my kids to school. My husband has taken over the grocery shopping and he is in sausage and cheese heaven. A neighbor kid plays with my kids outside in the mornings because heat can exacerbate my symptoms, so can stress and Fatigue. I rest a lot. Since diagnosis I have been placed on 4 medications in a row, Copaxone, Rebif, Tysabri and now I take Gilenya.

I have not had an exacerbation since July of this year. I count myself lucky because my exacerbation's are now about 1 year apart. To this date I have also been diagnosed with a Thematic Stroke, and Diabetes (type2). I read somewhere (Dr. Swank's MS diet book) that having MS is like starting the day with one gallon of gas when most people's cars have a full tank of gas. I just have to drive slow to get more out of the day. I have many more blessings than sorrows these days. My son is 10 and my daughter is 7 this year. I spend my days painting, or making little heart shaped bead necklaces. I have a good husband who rides the MS150 every year with a team of 21 people from his company. I have good health insurance and great in-home nurses when I need them. My favorite quote is this, "When the past it too painful to think about and the future to scary to comprehend, the only safe place is right now. The here and now is just fine." -Dawn Swenson-