My MS Story ... part seven

Since I made everybody cry w/ that last post, I’m adding a funny Sunny story at the beginning of this post to lighten things up a bit & hopefully make you laugh. What’s up with “Peanut Butter Pineapple Please”, you ask? Well you may have noticed the tennis ball in Sunny’s mouth. That’s because it was always there. She never wanted to give up the ball & you had to get creative to get her to drop it. She had her little quirks & you just had to figure them out.

Like when I would chuck it with the “Chuck it!” as far as humanly possible & Sunny would swim to the end of the earth to go get it. I had a routine, throw one for Luna first, then, after she went out I’d throw one for Sunny. This way Luna would get back first & I would hold onto her ball until Sunny came back. I would show Sunny the ball in my left hand & tap the empty chuck it on the sand with my right hand & say “drop it”. This kept things running smoothly. I constantly had 2 balls going at all times, one for Luna, one for Sunny, for hours on end. Some trips, it seemed that’s all I did ALL day, EVERY day. Luna’s a leaper & would leap huge waves to get the ball. If ever Luna ever couldn’t find her ball, you can bet Sunny was paying attention. After Sunny got her own ball, she would swim over & get Luna’s ball, swimming back w/ 2 balls in her mouth.

When we were back at camp at the end of the day, Sunny would just hang out with the ball in her mouth. If you wanted to get it, you could pinch her butt & she would drop it. Not hard, I mean she did have hip dysplasia. Sometimes all I had to do was touch her butt. Kids were always trying to get her to drop it & one said “Peanut Butter Please”. I was sitting next to her & pinched her butt. She dropped it. The next time it took Sunny longer to drop it so they added Pineapple to it. And this worked for quite awhile until I was busy making drinks in our outdoor kitchen & saw them saying “Peanut Butter Pineapple Please” over & over. I ran over saying “sometimes you need to add more fruit” & as they added Strawberry, I was able to pinch her butt in time & make it work. Whew! That was close. They were so amazed they had to tell their Dad. “Dad! Dad! If you say “Peanut Butter Pineapple Please”, Sunny will drop the ball! Watch!” & this went on until I finally put the ball away. Sunny was such a silly girl!

Now what were we talking about? Oh yeah….
We’re back at home & slowly moving forward with the Long Term Care process. Maybe that’s why it’s called Long Term. It really is a boring thing to focus on, yet scary at the same time. So that’s why I kept procrastinating as I was continuing to try & enjoy my life.

It’s August 4th & The Flaming Lips are here tonight! I don’t care how hot is, I am NOT missing this! I am determined to dance onstage again so I basically wore the same thing that got me noticed the last time they invited me to dance onstage; my neon green tutu, pink fur hat & a feather boa. I was not leaving it up to chance so I worked it out with the Stir girls to be included in the meet & greet.I brought the t-shirt they gave me last time that says “I danced onstage with the Flaming Lips” for Wayne to sign. When he saw it, he said I should dance onstage again. I said “That’s the plan!” in a Charlie Sheen style. ‘Duh! Dancing!’ As we shook hands & he said “you’re so rubbery” and then as I walked away he said “Look, you even walk rubbery!” Not sure what all that’s about but maybe it’s an MS thing? The dance recruiter said he already had enough dancers. I tried the whole “but Wayne said” plea, but it didn’t work. Bummer!

I then got asked to basically help introduce the Flaming Lips by the Stir girls & as I was exiting the stage I passed by Wayne & he said “You made it!” I said not really & he said I should stay & dance anyway. However, he was heading onstage to start the show so none of the stage crew was informed of this. I danced my heart out for 3 songs before they said I had to leave. I tried to explain that Wayne invited me. They were cool about it but still said I had to go. It turns out, that was probably the best thing to have happened right then, otherwise I may have passed out onstage & that would’ve been a whole other story.

Once I stopped dancing, I could barely catch my breath & thought I really was going to pass out. The 5 hour energy shot I took was not prepared for my rock & roll lifestyle, or the heat. Before I left the backstage area I saw a door that led inside of the air conditioned casino. I went in & a concert security gal told me I couldn't be there. I told her I didn't care & that I was going to pass out & just needed a few minutes. Another security gal came in & I tried to explain. I'm sure I sounded like a lunatic when I told her I think I have MS & I just need a few minutes in the air. Maybe I should’ve said "I have MS" but I hadn't been diagnosed yet. Plus I could barely think & really had no idea what the hell I was saying. I could tell I was freaking her out though. It all sounds like a Hunter S. Thompson moment. After a few minutes & downing a whole bottle of water, I decided to get out of there because it started freaking ME out. I went to find Fletch & my friends to watch the rest of the show.

It’s not over yet though. Let’s keep that candle burning! On the way home, our friend Stephanie called saying the band was coming over. Do you wanna know how many times I’ve heard that in my life & the band never showed? Too many times to count. But I wasn’t taking my chances when it came to the Flaming Lips. So to Steph’s we went. After seeing me in meet & greet, then onstage & now again at a party (I was starting to feel a little stalkerish), Wayne said “You’re everywhere! You know everyone!” I said "I know! I am everywhere!” I may not know everyone, but I do know the right people. We then hung out in a small room full of down comforters & fur rugs passing a bottle of whiskey, sharing some conversation & Flaming Lips chapstick. That was definitely a night to remember! And it renewed my Fearless Freak spirit!

That weekend Fletch had to go out of town & I went to the Hullabaloo Music Festival by myself & camped in the minivan. Fletch always sets everything up & does everything for me so this was going to be an interesting challenge. All of my kind hippie friends were there for support if I needed anything. I was definitely feeling the love. However, I was also feeling the heat & it was a long exhausting walk, yet short for others, from one stage to the other & I had to stop & take breaks. I always rely on Fletch's arm for support when I do a lot of walking or too much dancing. Too much dancing!? Whoever heard of too much dancing? That’s just crazy talk. It was a great liberating experience & a safe environment to test out camping by myself.

It is now time to get back to Long Term Care. My cousin Kim heard my plan & said that my plan wasn’t going to work. She already went through this process & she said they were going to ask me for every doctor I have seen in the last 5 years or so and that there was no way I was going to be able to hide what Dr. Jackass said. So I decided I was going to just take my chances with my medical records the way they were. But then my friend Georgia said her mom sells LTC & I should tell her my plan. She also said that there was no way this was going to work. She spoke to her underwriters about it & they said once they see that the doctor mentioned MS & recommended I see a neurologist, that before they would even consider insuring me, they would require I see a neurologist anyway. So she said I should just go on my own now.

So that’s when I knew my brilliant hair brained plan was over. I had to give up. I had to finally make an appointment with a neurologist and get the diagnosis I was dreading. No more denial. No more procrastinating. It was almost a relief, because now I could find out for sure. And it couldn't happen fast enough. Like I said, I knew in my gut that I had it, but now I was hoping to find out if I had the relapsing remittance kind of MS, or the worst kind, Primary Progressive MS, like my cousin Jenny.

My MS Story ... part six

Luna & I had originally planned to spend the entire summer in our camper out at the lake. Fletch would come when he could. It was going to be a summer to remember. However, along w/ the lake being way too full this year, there were just too many reasons why this wasn’t turning out to be a good plan. The summer had already started shaping up to be very hot & humid. The heat just kills me & exacerbates MS symptoms; much like the hot bath did at Christmas time. I had to give up going to several outdoor concerts as well this summer due to the extreme heat. Anyone who knows me knows I love music & going to shows & dancing my ass off. But the heat ruined that for me this summer. I also had a very hard time doing Yoga Rocks the Park outside at Midtown Crossing. If you read my YRP series, you may have picked up on that. So I was starting to get concerned about how I was going to handle our usual 10 day trips to Big Mac, my favorite place in the whole world.








It turns out that lake life wasn’t so bad. It’s much drier in the sand hills than the humidity that drenched Omaha this summer. And plus I was right by the water so I could cool off anytime I like. I was also worried about how I was going to handle my stand-up jet ski that we just got 2 years ago. I had wanted one forever & now that we finally got one, don’t tell me I’m not going to be able to ride it!

 Again, it turns out that I had no problem, because even though I have balance issues, the buoyancy of the jet ski in the water makes this one of the physical sports that I can still do fairly easy. I was so happy that I still had the ability to fly through the water at top speed w/ the wind in my hair & the sun on my face, as well as the ability to fly up & over the jet ski, through the glorious air & getting a head full of refreshing water as I somersaulted into it when I wiped out. It made me feel alive! It reminds me of my Dad on his boat w/ the wind in his hair & the sun on his face, minus the wipe out of course. I will ride this wave as long as it is physically possible. Because I am NOT a sit down jet ski girl.

So being at the lake didn’t seem like it was going to be a problem for me. I’ve got an awesome zero gravity lawn chair & a really cool shade structure when I need to chill. 

However, I was chilling there when my phone rang. It was my step mom Caroline. I answered, but immediately wished I hadn’t. I felt a strange feeling come over me that I couldn’t really explain. I could barely talk to her. I guess I was having an anxiety attack. At the time though, I had no idea what was happening to me so I had no idea how to explain this to Caroline, especially while I was in the middle of it. So I didn’t. I just kept trying to maintain a conversation but I knew that I didn’t sound like myself. And I could tell that Caroline knew I wasn’t myself either & that she didn’t know what to make of it. The whole time I felt like I could barely breathe, I felt really warm & I sat in the water the whole time I was on the phone, trying to cool off. But I was also cold & had goose bumps at the same time. I remember thinking that I just wanted to get off the phone & that I couldn’t wait until our next conversation so I could try to explain myself. When we finally hung up, I did my best to explain it to Fletch. I tried to keep cool in the water until I was so exhausted, I just had to go lay down. I just remember being uncomfortable & confused, still not knowing if I was hot or cold. I think I even skipped dinner. Maybe it was a partial heat stroke as well, but it was definitely anxiety.

I remember having so much trouble sleeping that night & being so frustrated about it that I started crying. I finally got up & left the camper so I wouldn’t bother Fletch. I grabbed my lawn chair & I went & sat at the water’s edge because I couldn’t stop crying & I didn’t know why. It was probably the fear of the unknown. The whole time I sat & stared at what we call the Sunny Tree. It was the tree that my Sunny girl spent her last hours under before she went to sleep forever. With the lake so full, it was now in the water. Ironically, it was now July 16th, one year since Sunny passed. And then I cried even more. I knew we had plans to sprinkle some of her ashes there at some point today. So since I was up & my mind wouldn’t stop, I went & grabbed my notebook. I proceeded to write a eulogy to Sunny.
I eventually got some sleep & when I woke up I had no more anxiety or depression or whatever the hell that was. But I was thoroughly exhausted.
Later that day, Fletch & I held hands as we sprinkled some of Sunny’s ashes in the water by the Sunny tree. I read aloud what I had written the night before:

It was one year ago today my sweet Sunny girl
As I stare at the tree you last sat under
Water now flows over the sand that last held you

A full moon shimmers, a light cloud cover
No wind, slight breeze
No waves, slow ripple

I close my eyes I’m hugging you now
Gentle & wise, soft knowing soul
You always knew, you always knew
I wish you were here, I wish you could be

Peanut Butter Pineapple Please….
                        Peanut Butter Pineapple Please….

I sprinkle some of you now to go with the flow
I hold the rest of you close because I can’t let go
You understand that I know
 
Warm heart, cold nose, sandy paws
My sweet Sunny sunshine, I love you!     

                

My MS Story ... part five

At the same time that I was putting my trust in the chiropractor, I was also doing my best scheming to find a way around what Dr. Jackass wrote in my medical records. Even before we had any indication of MS, Fletch & I had already been planning to take steps this year to get financially prepared for our future. We were watching my step dad go through Alzheimer’s without a long term plan & we did not want to be in the same predicament. Fletch’s mom, Susan, got us the Suze Orman financial planning kit for Christmas so that we could get started. The 2 Suze’s were here to help us. But before the holidays even ended & before we could really dive into it, I started suspecting that I had MS.

So now it was even more important than ever to plan for the future just in case I do need assisted living someday. We have health insurance to cover regular medical needs but if I need assisted living, then Long Term Care insurance is going to be essential. And despite the doctor ruining my chances, I became obsessed with finding a way around this.

It was a very long & drawn out process that went on for about 6 months. I asked friends & family who knew about or sold Long Term Care Insurance for advice. I told them all about the scheme I had come up with to make it happen. None of them discouraged me. They all made it sound like my plan was completely plausible & totally possible, which fueled my hair brained scheme even more.

I’ve come up with some pretty crazy schemes in my life. I just try to think of every possible scenario or obstacle & I figure out a way around it. I’ve been doing this my whole life. I think I learned this from my Dad, who taught me how to figure things out for myself. I’ve figured my way out of some pretty difficult jams, pulled off some pretty crazy shit & I was determined to do it once again.

My plan was simple. I would ask for a copy of my medical records & simply take the page out where the doctor mentions MS. I would then make an appointment w/ a new doctor, in a different health system, and bring my records with me, minus that page of course. Then I would apply for Long Term Care and when they asked for my medical records, I would refer them to my new doctor, never mentioning Dr. Jackass. I know, I know, it sounds crazy & it probably was. But if it worked, it would be the best scheme I ever pulled off, not to mention the first questionably illegal one. But hey, just because in MY mind “I” knew I had MS, I still hadn’t been officially diagnosed w/ anything yet.

I even had to get creative about getting a copy of my medical records. You would think I could just call up & get a copy. That’s what I did in the past when I switched form a doctor in Omaha to the doctor in Glenwood. However, this doctor’s office said they could send them to another doctor for free but if I wanted a physical copy of my own records it would cost me 50 cents a page. That’s ridiculous! These are MY records! As thick as the file was when I came to this doctor, that would cost well over a $100. So I called my cousin who works for a doctor who removed a fibroid for me 2 years ago. She had access to my electronic medical records & so she printed them out for free & mailed them to me. See, I told you, I always find a way around things.

Maybe all this was just something to keep my mind off of what was really going on. Maybe it was just another form of denial or maybe it was just something I felt like I was still in control of since I had no idea how to control MS.

Fletch & I started meeting w/ financial planners. It wasn’t as simple as just going in & applying. They all wanted to get some information first; what were our goals, when did Fletch want to retire, what’s our current financial state, blah, blah, blah. They would then devise a plan that would be best suited for us. I just wanted Long Term Care but we didn’t want to seem too anxious, or draw any suspicion, so we took our time, having several meetings with them over the course of several months. I remember focusing on my walking every single time I went to their offices, hiding any sign of a possible limp.

Another reason why it took so long is because it is just my nature to procrastinate. And I'm very good at it. Plus, we were heading into the summer months and camping season at Lake McConaughy. I am a fun first, instant gratification girl. And this girl was havin' a Big Mac Attack!!

My MS Story ... part four

Well I ended my relationship w/ Dr. Jackass & started a new one w/ a chiropractor at the end of February. This was another option I had discussed w/ that doctor because I had fallen twice in the last year & thought maybe some things got out of alignment. He agreed & thought that could also be the case.

My first fall was April 13th, 2010. My friend George was moving away to San Francisco & we were having a going away party for him at Skate Daze, which I still like to refer to as Skateland. George loves pandas & we were having a Panda Party, if anyone remembers those from back in the Skateland days. I even found a t-shirt w/ a panda on it wearing roller skates. I wore this w/ my favorite lime green tutu because George & I both love tutu’s. I got the whole table set w/ panda stuff, including some panda cupcakes that Chris Janicek had custom made for the occasion. It was perfect! Time to skate!

I put my skates on & I was ready to roll, or so I thought. 30 seconds & 30 feet later I fell smack on my tail bone. I couldn’t grip my fall because I had my camera in one hand & my Flip(will anyone know what these are years from now?) in the other. I tried to skate again but it just wasn’t happening, not even w/ Fletch’s assistance. I just hung out at the table & consoled myself w/ cupcakes.




The next day I went to the doctor, who was in Tabor, Iowa that day. He wrote a prescription for Vicodin, and when I walked out of his office there was a Stoner Drug right across the street. I just had to get my Vicodin filled at Stoner Drug, how could I not?

The second fall was in Mexico over Thanksgiving. This definitely was not due to MS but caused by a deadly mix of rain & marble floor. The marble floor extends from the room & out onto the patio where the private pool is. This makes no sense at all & I can’t believe someone hasn’t died yet. My legs went all kinds of opposite & unnatural ways. But once again, I am resilient. There was no Stoner Drug around this time but there was plenty of tequila!

So I started thinking that maybe I was just out of alignment, as opposed to my usual just being out of line. I was really hoping & even convinced myself that all of this had to be due to 2 bad falls. I just needed a chiropractor to get everything back in the correct place.

The first appointment I had w/ the chiropractor I told him about my falls but I also told him about my MS concern. After looking me over & giving me several adjustments, he reassured me that I absolutely did NOT have MS. He said I was so out of alignment that I shouldn’t worry about that at all. I was delighted to hear this news & I really believed it to be true. For months I did. I went 3 times a week at the beginning, then twice a week and then once a week. He told me I was getting better & I felt like I was, until Mother’s Day that is.

On Mother’s Day, Fletch & I went to Lauritzen Gardens with his mother, Susan. It all started out fine, walking thru the gardens & enjoying the beautiful 86 degree weather. It’s really not that big of a place, the total walk is only about a mile & a half. About a quarter of a mile in, I felt my left leg getting weaker & I put my arm through Fletch’s arm for support. Shortly after that, Susan asked “Are you limping?” I mumbled “I don’t know” & shrugged it off. I didn’t wanna hold anybody up or focus on it too much. But about half way through the gardens it was clear to see that I was limping. Susan suggested we rest on the park bench in the shade. I was feeling the heat & the shade was nice. We were right next to the lilac bushes that were in full bloom & the slight breeze was blowing their beautiful scent our way. I could’ve rested there all day.

Not wanting to hold them up, I pushed on. With only about 100 yards to go, it became evident that I was having a big problem. I was using the wall to brace myself with my right hand and holding onto Fletch’s arm w/ my left hand & I literally could not take another step. Eventually, I slowly made it back to the entrance where I waited on a bench like an old woman for Fletch to go get the car. I sat there scared, wondering what the hell was happening to me.

We went to El Aguila for lunch, where it felt great to sit down in the air conditioning & just relax. The whole time we were there I couldn’t get it out of my mind what had just happened to me. Although I was able to walk without limping when we finished our lunch, I knew that what happened today was not normal and it was not minor.

After a trip to the zoo at the end of May, and another similar episode, where I struggled to get to my car after separating from my friends, I was convinced that I absolutely DID have MS.

Now that I was done with Dr. Jackass and I had no faith in what the chiropractor said, what was I supposed to do next?

My MS Story … part three

Its Valentine’s Day 2011 & I have the best present a husband could ask for….Laryngitis!

My annual sinus infection began on rehearsal Saturday for the OEA’s, the Omaha Entertainment Awards for those of you that don't know. Fletch volunteers as an assistant stage manager & I’m basically an assistant-to-him, making sure the presenters & performers are where they need to be. I do a lot of running around & having a voice helps to be able to find these creative care-free spirits who tend to get lost in celebration.

I barely had any voice by Sunday night's OEA show.I’ve had sinus infections every year for as long as I can remember & my voice sometimes turns into that sexy raspy voice we all enjoy for a few days, but I had never lost my voice entirely. I am certain this was more than okay with a few folks.

I went to the doctor on Monday, Valentine’s Day, and I got my usual antibiotic prescription of Zithromax. Same shit, different year. He advised me to rest my vocal chords & quit trying to talk or I was going to make it worse.

While I was there though, I decided I needed to approach the subject of my left foot, or leg; I still wasn’t sure. I described the weakness in my left leg & how I felt like my toe was dragging during walks. After that, these were my exact words to my doctor whom I had been seeing for years and really liked & trusted:
“Just between you & me, I had an MS scare about 15 years ago. I had Optic Neuritis & was told that could be the first symptom of MS. My doctor at that time said he wasn’t going to mention MS in my medical records because I would never get insured if he did.”

Well I don’t know if he doesn’t know what “just between you & me” actually means or if maybe he couldn’t hear me due to the laryngitis, but I’m thinking he’s just an asshole. I’ll explain.

He did a neurological exam, which was nothing more than a reflex test, a grip test & a resistant test. He concluded that I had normal deep tendon reflexes in the upper & lower extremities, a strong grip & good strength in my legs. He then referred me to a neurologist & had the nurse schedule the appointment for me a few days later.

I went home and now, 13 years later, searching the internet was a built in reflex so I started researching MS. The very first site I went to said “Do not let anyone diagnose you with MS until you get all the insurance you can”. I have health insurance, but I don’t have Long Term Care insurance in case I need assisted living when I get older. So I immediately called the doctor’s office back & told the nurse that I was thinking of delaying the appointment w/ the neurologist until I got things set up, just in case I got a diagnosis of MS. She checked w/ the doctor & he agreed that I should wait until benefits are in place.
There was no mention that he already mentioned MS in my file, therefore ruining my chances of getting any coverage.

After I researched more, I started getting curious about what the doctor actually wrote in my file. I called the doctor’s office & asked the nurse if she could tell me what it actually said. He mentioned I was having leg weakness AND that I had Optic Neuritis AND that I had an MS scare about 15 years ago. It was all there. What part of “just between you & me” did he NOT understand??

I called back to ask the nurse if he could remove his comment. She said he could not. After stressing out about it for a week, I called again and asked that the doctor please call me. He did & I tried to speak to him rationally about what he put in my file & I asked him to remove it. He didn’t say “I can’t remove it”. He said “I won’t remove it”. So that says to me that he really could have, but that he just wasn't willing to. I was upset & started crying. He asked what the problem was. REALLY?? I said he just ruined my chances of EVER getting Long Term Care insurance. Because I was upset & crying he actually said, “Vicki, there seems to be more going on here(in such a condescending way) & you just need to come in & see me”. WHAT?? He was implying that I was depressed & emotionally unstable. Who wouldn’t be upset when facing a debilitating disease & not being able to get coverage??

I said I would explain why I thought he was an asshole. I think I have done that, have I not? I wish that doctor would've kept HIS lips zipped!

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.