My MS Story ... part two

It is now the Fall of 2010 & I find myself full circle back in the Loess Hills. We moved many years ago into a nearby Glenwood neighborhood, only 5 minutes away, but for some reason, we never get back here, other than the occasional camping trip at Pony Creek. I’ve got a new gig though, walking a dog named Sky, and this is where he lives. I’m so excited to be getting paid to spend time w/ a dog, in a beautiful setting & getting some much needed exercise as well. It’s Fall, the air is crisp & life is good!

Sky’s pace is sporadic. He stops & checks stuff out a lot but occasionally he can’t wait to get to the next scent so I have to pick up my pace & sometimes find myself actually jogging. It’s been years since I’ve exercised regularly & it feels great. Jogging was something I had never really done before & I was amazed at how much I was enjoying it. But like I said, Sky wasn’t very consistent & we’d go from jaunting for a bit & then back to a casual wander. So it wasn’t too intense of a work out, but at least it was something. It was better than sitting on the couch, which is what I’d been doing for the last year or so.

It was towards the end of these walks that I started questioning something w/ my left leg, or foot. I wasn’t quite sure. You know how when you’re walking in tennis shoes & the rubber grips a bit on the carpet? Well I was walking on gravel, but it was like that. But it seemed to be happening to my left foot only. I really just thought it had been my lack of exercise & after awhile I’d be back on track. 

In the meantime, we went to Mexico over Thanksgiving. We are usually “go, go, go” on a trip; snorkeling, kayaking, sailing, etc…, but I was just looking forward to relaxing on the beach & feeling the sun on my face. We did one tour, which included Mayan ruins, cave snorkeling, zip lining & repelling. I was nervous about repelling & didn’t think much about how slow I was walking up the very high structure. Again, I just thought I needed more exercise. I did make it & I did repel!! Other than that I did have a pretty relaxing trip w/ 2 great spa days & lots of tequila shots delivered to our private pool.

Back at home & walking w/ Sky one day through Pony Creek, I was feeling weirdly exhausted, like nothing I’d ever felt before. I had to sit down on the ground & rest & I barely had the energy to hold on to Sky’s leash. He didn’t feel the same about resting as I did. Eventually I was able to get him home, but it was a struggle. I was still having the issue w/ my foot so I decided to see if it was the gravel or me. I got on the treadmill to test things out & sure enough, my foot was clearly dragging after about 20 minutes. I did a test afterwards by bending my knee & lifting my right leg up. It went all the way up. I did the same test with my left leg & it would only go about 90 degrees. I think this is when I knew.

I didn’t want to say anything out loud just yet, not even to Fletch. I did not want this to be true. So I kept walking hoping it would go away.

Now it’s Christmastime & I’m having Christmas Eve dinner at my house so that week was very busy & stressful, especially with my Mom’s usual antics, getting mad & threatening not to come. I’m at the grocery store & all of a sudden I get these shooting pains in my head for about 30 seconds at a time, and then no pain at all. It happened several times & that was it. I get migraines but I’d never had anything like that before. Had to pick up more groceries the next day & the same thing happened. Someone said I should stay out of Walmart & I tend to agree, but I needed a lot of food at a good price so I made an exception.

It’s now Christmas Eve & I got up early & spent all morning cooking. I was starting to feel exhausted & felt the sudden need to take a bath & relax before everyone came over. I used relaxing bath oils, put on relaxing music, lit some candles & got into a very hot bath. That’s how I like ‘em. After I felt completely relaxed, I tried to get out of the bath. My legs didn’t want to lift me into standing position so I basically had to crawl out & over & onto the bathroom floor. From there, I tried to lift myself up w/ my arms & I collapsed back to the floor. I laid there for a while, thinking once I cooled off, I would be able to accomplish this task. Not so. I had to call out for Fletch & he basically had to carry me to the bedroom where I could rest & cool off. This was when I thought I might have to cancel. I eventually was able to get dressed, but I didn’t waste any energy doing my hair & make-up. I was determined to make it through this dinner that I had spent so much time on. I was making a Prime Rib Roast & Crème Brule for the first time, I had new Christmas dishes and my table & tree looked perfect! I may have felt like death but the meal was awesome & I made it through the evening.

In the middle of January I had a similar experience so I went to the doctor. They gave me some shots but I was too dehydrated for them to draw any blood. I went back on Monday after drinking lots of water, they were able to draw blood, ran some tests, checked my hormone levels & said I’m in great health!

My MS Story ... part one

It was the fall of 1997. Fletch & I had only been married 2 years, we had just moved to the beautiful Loess Hills in Iowa a year earlier & we had just started our family w/ the addition of a yellow lab puppy we named Sunny Begonia a few months before.

I was at work selling Omaha Steaks over the phone using a computer to place orders. I kept cleaning my glasses because the computer screen seemed a little blurry. After I did this several times, I finally checked for scratches on my lenses, and of course there were scratches because I never took care of them. But it was still driving me crazy & so I took off my glasses & held my hand over one eye & then the other. I thought I was noticing a little difference in my left eye but I still wasn’t sure. When I got home, I asked Fletch to stand a few feet away from me while I went back & forth holding a hand over each eye. It became very clear that I could not see his face clearly w/ my left eye. It really freaked me out.

I made an appointment w/ an Optometrist, who after several “better here, better here” tests, said that “if this is permanent, there was no corrective lens strong enough to correct it.” That’s when I started getting scared. I remember crying thinking I was going to lose my eyesight. He then referred me to an Ophthalmologist at UNMC. He ran a series of tests finding no answers, and more importantly, no solutions. It was getting scarier. He then referred me to a neuro opthamologist by the name of Dr. Richard Legge, who sent me immediately to Immanuel for an MRI. It was a Friday & he told me to get my results from the MRI & then bring them w/ me for my follow-up appointment on Monday.
Back in those days, they gave you a huge envelope w/ black & white film x-rays. That was the worst weekend ever as Fletch & I looked over the x-rays all weekend thinking I had several brain tumors. Immanuel had circled what appeared to be several spots on my brain. I was scared to death that I was going to die. I remember being at O’leavers w/ friends that weekend & being in my own head. I remember making promises to a god that I didn’t even know if I really believed in if he would just make it okay.

I went back in on Monday & Dr. Legge assured me that I didn’t have brain tumors. He said only one spot was circled on the x-ray from several different views. He informed me that I had Optic Neuritis & that it was treatable. I received At-home healthcare for 3 days where a nurse came out to my house in the middle of nowhere in the hills of Iowa. She administered an IV infusion of steroids a few times a day for 3 days. It was in December and it was impossible to get to my place in the snow. Of course it snowed & she couldn’t make it so I had to administer it myself. I remember freaking out & frantically calling Fletch & then her because my blood or something was going the wrong way in the tube. I guess I was supposed to keep something higher than something else & she talked me thru it over the phone.

I felt great on steroids. I was getting so much done around the house, singing as I cleaned & my appetite was amazing. I asked the doctor if I could be on steroids forever & he said no, that it wasn’t safe. I suppose that was a good call for my figure because we went to Champps, the restaurant at Oakview that had HUGE servings, and I was able to eat the entire meal! That never happens.

Anyway, after the steroid treatment my vision returned to 20/20. I was so happy! The doctor then told me that Optic Neuritis can be the first symptom of MS, but that one can get Optic Neuritis w/o having MS. He said he wasn’t going to mention MS in my file because I would NEVER get insured. He also said if I didn’t have any more symptoms for 5 years, I should be okay.

I never questioned what the symptoms might be & I never really thought about it again. As I said, it was 1997. We had just recently got our first computer, when Yahoo was still the main search engine & we used dial up modems, which made being connected ALL the time impossible. There wasn’t even enough information available on the World Wide Web, as we called it, so searching wasn’t an automatic daily routine. Had it been, I would have searched what symptoms to watch for and what it meant to have MS. We were young & living life & didn’t think about the future. We went back to life as normal. And I didn’t keep the promise I made at O’leaver’s that desperate night.