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!!