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.