What’s going on today

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Just a quick update: My application for disability was denied last week and I’m actively working on an appeal.  I’m pretty hopeful about this second try.  I don’t want to get into all the details right now but promise to update everything once I know more.  I should know within the next couple weeks.  :)

weekend getaway

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First- I hate that every time I write something, its all gloom and doom.  But unfortunately, at this moment, its kind of how it feels.  I’m just very worried the deterioration of my physical abilities and the financial burdens that are on me right now.  I swear to anyone reading this, once the Disability application is approved, I’ll go back to my positive self.

I went away for the weekend to stay with my Aunt across the state.  It was a very fun weekend, but it certainly didn’t do anything to alleviate the above mentioned concerns.  She lives in a 2 story home and “my” bedroom is upstairs.  The daily up and down is crazy hard!  Inevitably I’d always forget something upstairs so I’d have to hobble on up and then back down.  The up is definitely easier than down, though, which is weird.

We went to the beach and, though the waves still aren’t that big (it IS still Florida after all) I definitely didn’t feel comfortable going in.  I think my aunt sensed that so we spent some time at a neighboring pool.  Pools are okay for me.  Swimming isn’t difficult at all- the whole weightless aspect makes things easier.  However, getting out SUCKS!  Its almost as if while in the water I forget that it feels like I have 20lb weights on each foot on dry land.

It will get better, even if its just by me coping with things better.  I’ve already accepted it, now I just have to deal with it.

doctor frustrations

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Ha… where to begin.

My neurologist, Dr. K, is a bit of a character.  His photos are plastered all over his website.  He has a book.  He has his dog, a white mini poodle named Mozart, at the office with him.    Here’s his picture:

Nice plugs, right?

Dr. K is that same doctor who asked that semi-fateful question in 2007 about the possible mis-diagnosis of MS.  He never said to go off medications or anything, so I don’t blame him at all.  He didn’t ask for any records either, though.  This is the doctor I’m now seeing again.

I first saw him on June 14, well- first time since 2007!!  He really didn’t impress me.  He watched me attempt to walk, asked how I’m feeling, basic stuff.  I told him my fears of losing my job because my physical and mental symptoms were getting worse.  I told him how I forgot to lock the door at the store one day.  FORGOT TO LOCK THE STORE?!?!  In my 20+ years of retail management, this had never happened.  He told me I just needed to write things down.  Generally unconcerned.

About a week later, I noticed that the right side of my face was getting numb.  Of course this happened on the weekend, so I called The National MS Hotline and asked what to do.  They said to either go to the emergency room or call my doctor.  Of course Dr. K is off, so I left a message with his service.  He called me back, but was generally unconcerned.  Its just part of MS.  He said “your physical symptoms were minimal at best” so he just kinda said to deal with it.  I was a bit suprised at the “minimal at best” crap though- I was only slightly better than having a club foot!  My father is also quick to note that he seemed to shut down when he realized I may not be insured depending on pre-existing conditions.  Looking back, I’d have to agree.  His whole demeanor changed and pretty much ended the discussion.  He basically didn’t want to talk to me further until after I’d had an MRI again.

Luckily, insurance was fine and I was able to do the MRI haha… eventually.  My co-pay with my insurance company was $600 for the MRI.  CO-PAY!  Thanks to the support of my family, I went somewhere else because Dr. K was pretty adamant about me having the MRI for comparison with one I had in 2006.  So…  there we go.  MRI set.  Old MRI in my hand.  Here we go!!

I met with Dr. K for the follow up.  He came in and talked to me for all of 10 minutes, typing away on his computer the entire time.  He said that my MRI results were consistent with a diagnosis of MS (duh) and….  wait for it….   No doctor would ever question the MS diagnosis after looking at this MRI.

Let it sink in…..

WHY THE HELL DIDN’T YOU ASK FOR IT IN 2007?????

And…  aren’t you wondering if my MRI any better or worse than in 2006?  SO AM I!  He never compared them.  He said there’s just no point because this one looks so bad.  This is when he said that line that sticks in my head every day “You’re doing very well considering how bad your MRI looks.”

I have an appointment with a new doctor at the end of August- his first available appointment.  He has an MS Clinic so is definitely more appropriately educated and well versed in all things MS.  My next visit with Dr. K is in 2 weeks.  I’m only sticking with him because all the paperwork is going to him for my disability claim.  *sigh*

Some people want to kiss the sky…. I want to fucking PUNCH the sky!!

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God damn it.  I hate the whole woah is me, why bullshit… but god damn it!!  Turtle patrol kicked my ass today (I’m determined to still go every week!) and now I just tried to do some yard work and THAT kicked my ass, too.  I was out for about 30 minutes and cut back my purple flowers that were out of control and I wanted to build another chair planter.  You’d think its simple…. but NOPE!  A little activity and I get all confused and light headed.

FUCK THIS BULLSHIT!!!!

Apologies if this upsets anyone reading this.  I just really need to vent.  What I’d normally go do is prop myself up at Turtle and drink this shit away- but I’m fucking broke until unemployment or disability comes through.   Grrrr.

 

/rant

loss of a friend revisited

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The inevitable has happened and I ran into Jennifer at my favorite bar, The Thirsty Turtle, last night.   I didn’t see her come in, but a friend pointed her out.  She stayed at the other side of the room until curiosity, I’m sure, got the best of her and she made her way over to me.  She looked like a child as she hung her head and shrugged her shoulders while muttering “I really miss you” and “I’m sorry” and “I’ve been wanting to know how you are”.  I couldn’t even look at her.  She made the mistake of coming to my left side so it was easy to ignore her presence.

I didn’t really ignore her.  I told her I didn’t know what to say to her and just continued to avoid eye contact.  I wasn’t actively avoiding- I just couldn’t bring myself to look at her.  She finally just walked away.  She bolted out about an hour later and this time it was her turn to avoid eye contact.

Now around 24 hours later, I still don’t know what I would say to her.  I’m pissed that she actually said she thinks of me and always wonders how I’m doing.  If she wanted to know that badly she could call.

parental consent

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I recently had to fill out an 8 page “Functionality Report” for Social Security to illustrate how the disease affects my everyday life.  This same report is also sent to 3 other people to get their perspective on my disease.  My parents were sent this report yesterday so today I had to come clean about everything that’s going on.

My dad already knew about the seizures because, unfortunately, he had seen me have one in the middle of a stupid argument we had.  (That’s one way to win said argument, right?!!)  I’d asked him to not tell my mom just yet because I didn’t want her to needlessly worry about things like me driving until I knew more about what was going on.  Of course, he told.  I should have expected that.

So *sigh* I brought the report with me for my mom to read.  She handled it like a trooper, though I knew she was crying.  She said she knew it was rough on me physically, but it just hits hard when its all written out for you like that.  She didn’t realize, though, about how much of my life has changed.  The thought of going to a concert right now really scares me- I don’t think I can handle standing for a few hours like that, much less walking whatever the distance is from my car to the venue.  THAT is huge.  I’m used to going 3-4 times / month, if not more.

I don’t really go to the beach too much anymore.  If I can figure out a shorter beach to go to, I don’t like going in the water once there because I’m really unstable as it is and the water makes me even more clumsy.  I moved to Florida for the beach, man!  That sucks!

I’d love to take Oliver to Dog Beach, but it scares me too… if anything were to happen I wouldn’t be able to run after him or run to his aide at all.

Its little things like this that I’ve taken for granted in the past.  It really makes me wonder what I am able to do today that I will lose tomorrow.  And today was the first day in about a week that I was seizure free (well since 4am anyhow)!  I should be happier about that.

/debbie downer shit now…  apologies.