Sunday, January 25, 2009


I am always so excited when people comment on my blog, or email me to say they were reading it. It is nice to know that what I write is at least somewhat interesting to others. Many days it is just an outlet for me, a place to put my thoughts and the bazillion emotions churning around. Other days it is a quick way to keep my loved ones informed. I am always amazed when people I have never even met comment on my blog, to offer good wishes and advice. People are so awesome. So it would seem, as indicated by the kind comment on my last blog (and by further internet research) that Sjogren's is still somewhat on the table. I guess a negative blood test is a good sign, but does not necessarily mean I am off the hook. Obviously I will keeping my previously scheduled appt with the rheumatologist!

Also, I went and got another opinion on the bulging disc in my neck and the orthopaedist agreed that it was pretty bad. He could even see that it was herniated on an xray. Yuck! I started physical therapy last week and I am really Really hoping that the disc is pushing on my nerves. (Who ever thought Anyone would hope for such an awful thing?!?!) In my defense, and to let you know that I am NOT a masochist, if the disc is responsible for my arm nerve pain then that means there is actually SOMEthing I can do about it, rather than curse the MonSter for a symptom I can do nothing to cure. My left arm has by far been my worst nerve pain, so what a complete JOY it would be to kick that left arm pain to the curb.
Only time will tell as I diligently try whatever my physical therapist tells me to try and wait patiently to see what happens.

In other news, I am once again duking it out with the insurance company over paying for medication. Dr. Thrower wants to switch me to Copaxone, another injectable drug designed to slow down the MonSter. Good news is that it is said to have less side effects and I won't wake up in the middle of the night with fever and chills as often; Bad news is that it is an injection every day which is a bummer. I try not and be too whiny about it, because one of my favorite uncles has to give himself at least 5 shots every day to manage his own monstrous disease, so when I feel a pity party coming on I remember him and if he can do 5 I can do 1.

Oh and my insurance is Totally going to pay for this drug, they just like to make me jump through hoops of fire while twirling batons and singing the national anthem just to prove I Really want this medicine. So when I have jumped high enough for their liking, they will pony up. :-)

In the meantime, we are gearing up for an exciting year: WalkMS 2009 is officially on the calendar and Team Wearing Red Shoes is up and running! 6 team members and counting...but my goal is to have 30 people on our team this year, so links will be below- sign up!
Also, we have two big weddings this year and lots of wedding-related fun events. Our dear friends Steven & Tiffany are saying their "I Do's" in April, then Chris' brother Matthew is marrying our soon-to-be-sister-in-law Katie in May. I love it when people I love get married.

I am sorry this blog lacked a solid theme. I usually try and be more cohesive in my thoughts and writing, but tonight my brain is just rambling on and now so is my blog. Time to go do PT exercises before bed and enjoy my "nights off" from shots while I still can! :-)

See below for link to my WalkMS page. From there you can join the team and/or donate. We know its a rough year out there, so all we ask is enough to keep the MS research alive and well.
Every little bit counts!

Saturday, January 17, 2009

Good, Bad, Good, Huh?!?

First of all, people never cease to amaze me.
Here I am going through all this craziness and as I share my thoughts with the world, not only do my family and dear friends cheer me on with emails, phone calls and comments but then perfect strangers also send me their thoughts and well wishes! People are truly amazing.

Chris and I woke up early on Wed morning for MRI Take Two! I woke up at 6am, took my doctor-prescribed Ativan at 7am and by 8am I was telling the technician that I was planning to sing show tunes while I was inside the MRI machine! (The tech informed me it would be better if I did NOT sing show tunes. We finally compromised on me singing them in my head instead of outloud). No, I am not making this up! As I changed into my attractive cotton gown for the machine, Chris apologized to the tech informing him I was "high" on Ativan. The tech just laughed and said I wasn't the first! hehe. Frankly, I could care less if I made a complete fool of myself because I made it through the MRI! Yippee!!!

An hour and a half later (now slightly coming down off the Ativan!) we met with Dr. Thrower for the results of last week's blood work and of the MRI:

The Good: I have no new lesions in my brain! Yippee!!! Clean brain!!!!

The Bad: I do have a new inflamed (aka "active") lesion on my spinal cord. A lot of people don't realize that MS can cause lesions on both the brain and/or the spinal cord. And this week we discovered my first cord lesion. SO annoying and unpredictable this disease. This little bugger is in my neck area and it may or may not be responsible for the nerve pain in my left shoulder/arm that has been visiting ever since the summer. Sooo, that means the medicine I have been on isn't doing what we hoped it would (it is supposed to keep new lesions away, in theory). Sooo, I am in the process of switching from Betaseron to Copaxone. Hopefully by next week Aetna will have approved this new med and I will be on my way to switching over. I am nervous about it and a little scared, but optimistic that it will work better for me and jive with my body chemistry and keep me lesion-free for years to come!

The Good: My blood work came back normal, meaning the Sjogren's antibodies were negative, meaning as far as we can tell I do not have Sjogren's Syndrome. Yay! Still NO idea why my eyes gave up producing tears, but I am hopeful that this is all just a weird reaction to too many steroids and they will come back in time.

The Huh?!?: The MRI also showed that I have a bulging (herniated) disc in my neck between C6 and C7. Wh-what?!?! How random is that? I have NO idea how this happened, as it did not show on my MRI a year ago. Even more interesting is that there is a chance that this disc could be responsible for the nerve pain in my left arm! In the fight of the century, my spine lesion and my herniated disc are dueling it out for the title of "Nerve Pain Causer"! Dr. Thrower has recommended I start PT ASAP to try and get the disc to chill out. Stay tuned to see who wins this duel and claims the title!

Needless to say it has been an exhausting week. I had a good bawling cry Wed night about the whole thing and since then I am coming to terms with all the news and working my way through the 5 million emotions that come with it!

Again, thank you so much for all the love and support. It means so much and on the bad days is what keeps me going. I have hope for the new year. I truly believe 2009 is going to be a good one. I turn 30 this year. I am starting on a new medicine which I just know is going to help and make me feel better and keep the MonSter quiet. The economy is crap, true, but it is often in tough times when people pull together, lean on each other and do amazing things for one another.

Monday, January 5, 2009

No One is Perfect...Least of all Me

Well I arrived at Shepherd Center at the bright and early hour of 7:15AM. For those that know me, I am NOT a morning person, but I was in a good mood, ready to get the show on the road.

I signed in, joked around with the MRI technician. He found my vein quickly and easily, shot me full of the special gadolinium dye material. He gave me a blanket, secured my head so I wouldn't move during the scan and into the tube I went...

And then I don't know exactly what happened.

I have had my fair share of MRIs. I am good at them. I close my eyes as soon as I lay down so that I don't see the cage over my head or the tiny metal tube I am then shoved into. I keep my eyes closed the whole time, picturing myself laying on a picnic blanket on a lovely autumn afternoon at the Garden Hills duckpond. And then I sing showtunes silently in my head while the machine whirls away around me.

But this morning at 8am the machine started and I felt like I was going to pass out. My body got extremely hot, my eyes were burning (maybe I didn't moisten them enough before I closed them??) I completely panicked. I squeezed the button to let the tech know something was wrong. He came running and pulled me out of the machine. We got to talking trying to figure it out. Did the dye infusion make me feel woozy for a minute? Why did I feel so hot when the machine started, but as soon as I was out felt fine? I mentioned my new eye plugs. The tech asked was there any metal in them? I didn't think so. But of course he insisted we check to be sure. A couple of phone calls later, my eye doctor is certain the plugs are completely plastic, which means I just had an old-fashioned, run-of-the-mill panic attack.

I am so mad and disappointed in myself that I could just scream. I begged the tech for a do-over, but of course now he has to have formal written documentation from my eye doctor stating there is no metal in the plugs. No one wants to get sued, and I can respect that. I thanked the tech for his time and apologized for the 50th time and he smiled and said not to worry and we would reschedule soon. I called my eye doctor back asking them to draw up a document and fax it to Shepherd as soon as posisble. Meanwhile I am simply sick to my stomach over acting like a complete baby and freaking out for no reason whatsoever. I promptly walked outside sat on the nearest bench outside the newly reonvated Shepherd Center and then burst into tears.

But I have learned several important lessons this morning:

1. No one is strong all the time. Everyone is allowed and needs to panic and be scared and then cry over acting like an idiot. If nothing else it is humbling.

2. Having "punctul plugs" put into your eyes does NOT mean you will not be able to cry tears. You can still cry. Lots!

3. Stress comes out in surprising ways. You might think you are handling things perfectly well and NOT scared about possibly having Sjogren's Syndrome and NOT completely frustrated over your eyes hurting all the time on top of not being able to see straight and THEN you panic during a routine MRI and you realize you weren't handling things all that well after all, you were merely suppressing it all.

So you work through the emotions like you went through the boxes of Xmas decorations you pulled from the attic last month, looking at each one and remembering it, laughing, smiling, crying, or whatever else you need to do to process it all. Then you wrap them each back up, gingerly, carefully, put them back into their box, into the attic...and you hope and pray that the ceiling doesn't suddenly decide to cave in and drop the box of emotions right on top of your head!

I still get to see Dr. Thrower or Tracy today. So I will get some nice face time to ask questions, etc. I am grateful for that. And hopefully by this afternoon i will be able to laugh at myself as I tell them I panicked in the MRI for no particular reason. And we will reschedule soon, maybe next week if they have something. And I will try not to be so hard on myself and rather listen to my body, which obviously was trying to tell me something this morning.

Lastly, I hope I have not disappointed all of you whom I love and admire. I know we were looking forward to these results and what they would tell us. I am sorry we will have to wait a bit longer. I have always struggled with the idea of perfection, of things being "perfect" and with wanting to achieve some sort of perfection myself. I was a straight A student most of my life (did I mention I now have a 4.0 at Oglethorpe?) and have always beat myself up when I feel I didn't do as well as I should have at something.

Well I can safely say that today, i got a "C", maybe even a "D" at "Passing the MRI with Flying Colors". In fact, I totally failed!!! I pretty much got an "F". And I am still me and I am okay and I will laugh about it and laugh at myself and in the grand scheme of things it is not a big deal.
I am not perfect.
No one is perfect.
And how boring life would be if we were.

Thursday, January 1, 2009

Happy New Year!

Wishing everyone a new year filled with laughter and love, two of my very favorite things!
I am still struggling with my eyes and they are so dry right now (they are much worse at night sometimes) that I am having a hard time keeping them open very long so this is short! But had to send happy 2009 wishes out into the great beyond. It is also my Christopher's 31st birthday. He is currently playing with his Rock Band drumset and new video game.
Boys are never too old for new toys!

Heading to another eye doctor tomorrow for a second opinion on Sahara Eyes. Thanks for the awesome advice and comments to help me everyone! I am also trying to go see a rheumatologist asap to see if this really is Sjogren's or not. Then Monday I am having my MRI of the old brain to see why it keeps causing relapses all the darn time! Busy busy next few days! Will write more soon to keep the updates coming.
But before I go, I have two bits of info to share:
1. Did you know that the Pope, as in The POPE, wears red shoes!?!?! I just found this out today and am thrilled. He obviously is a supporter of finding the cure!!!
2. I will start the new year with this quote. I LOVE quotes. And it applies no matter what your situation is:
"Be of good cheer. Do not think of today's failure, but of the success that may come tomorrow. You have set yourself a difficult task, but you will succeed if you persevere; and you will find a joy in overcoming obstacles." - Helen Keller

May we all find the joy in overcoming our own obstacles.
Happy New Year.