Sunday, August 31, 2008


A quick update to let everyone know I had a minor blip on the MS radar this weekend...

Had an appt at Shepherd Spinal Center on Thursday to discuss my recent increase in nerve pain and spasticity. My team of doctors/nurses felt this change was most likely due to minor inflammation in my brain. This was possibly brought about by my recent sinus infection (infection is a very common trigger of MS relapse/exacerbation/episodes). They wouldn't call it a "relapse" so I am going with "quasi-relapse". :-)

Long story short I started Solu-Medrol (IV steroid infusion) on Friday, completed Day Two yesterday and completed final dose this afternoon. Whew! So happy to have it over with. I am feeling a little crappy today, no doubt from the massive amounts of meds being pumped into my veins for 3 days. But hopefully this will help get my pain levels back to normal and manageable. 

We are so blessed with so many people who look out for us, send us happy thoughts...on the Good Days and the Bad Days and all the days in between. It means more than you could ever know. 
I have LOTS of new blog posts in the works, but am understandably behind after this weekend. But look for more from me very soon. 

My love always, 

Sunday, August 24, 2008

MS September Safari

Our websites are finally up and running!

The email feature on the site was acting up, so if you just got a weird email from me, ignore it. I am sending the corrected version ASAP. :-)

Would love to have you join us for a fun day at ZooAtlanta!

This will be a very family-friendly event, so little ones are long as they participate and do their best to fundraise with us!

You would be surprised how easy it is to raise $100 for a cause you believe in. $25 from 4 of your neighbors or $10 from each of the people on the soccer team. Small amounts add up quickly!

Hope lots of Red Shoes will join us on our Hunt for the Cure!

Monday, August 18, 2008

Don't Panic

I read a magazine article recently in which the author referred to herself as a "disaster magnet". While this probably sounds a bit over dramatic, my heart did go out to the writer. Everything from death of a close family member to diagnosis of a serious, potentially fatal illness, to the loss of her career and income - all of this had happened to her, in a rather short amount of time. She began thinking and saying, "OK then. What's next?" as she anticipated the next horrible thing bound to come her way. She started having anxiety attacks and found herself in a constant state of worry.

I immediately felt a kinship with this woman, as I recounted my own series of medical disasters:
April 2006: I find an odd, small, hard lump in my left breast. I see one doctor then a radiologist as it is deemed "suspicious". A biopsy concludes it is most likely a benign fibroadenoma tumor, and it may or may not continue to grow.

June 2006: I am jolted awake at 6:30AM with the worst charlie horse of my life (a possible precursor to MS spasticity?? dunno...) I am overcome with pain...and then with nausea. I run to the bathroom to vomit. I never make it to the bathroom. I faint, falling face forward onto, well, my face. I knock out my front tooth and also bite through my lower lip on impact. An ER visit, 11 stitches, a root canal and a crown later, I am doing much better, and my dentist and plastic surgeon did such great work you can hardly tell anything ever happened.

November 2006: Six month recheck of lump determines it is growing and I undergo my first real surgery to remove my stubborn growing lump. The surgeon is amazing and she does a great job.

April 2007: I wake up one morning with blurred vision. I figure I must be really tired or didn't sleep well the night before or something. 24 hours later it is getting worse and is now true double vision. I call my dad who gets me in to see an ophthalmologist, then a neurologist, then I have an MRI, then neurological function testing and finally a spinal tap. Before we know I am diagnosed with MS. Neuropathy (aka horrible icky nerve pain) starts shortly after the vision problems. I begin my treatment at Shepherd Spinal Center which includes drugs to help manage my pain and spasticity plus the Wonder Drug to help slow the progression of my disease. We wait for this first exacerbation/episode/relapse to end, hoping that with it, my pain-free-single-vision body will return.

March 2008: Almost a year later, the pain and double vision are still hanging around. But I am adjusting as well as anyone can. Then first official relapse (they actually don't call your first diagnosis relapse a relapse. it is very confusing). With it comes vertigo and mind-numbing pain, mostly in my arms. A round of solu-medrol later I am doing much better.

Frankly, I think that is a lot of medical drama for a 2 year span for anyone, even a Drama Queen! So does all this make me a disaster magnet, too? The article I read went on to say how every little thing then became an opportunity for further crisis. Evey car trip a potential for an accident, every pill taken could end with allergic reaction, every phone call was surely someone calling with more bad news. I also have days where I am certain something horrible will happen. I started to become totally neurotic about taking any new medication, certain that I would anaphylax, end up in the hospital. There was a chance I would die.
On my really bad days when my eyesight is crapola and neuropathy is kicking my butt, I sometimes don't think there will ever be light at the end of the tunnel.

I have now found that the trick is asking yourself, "In this situation, what's the worst thing that could happen? Now what if that thing DID happen?" I know it sounds a little depressing, but stay with me a minute here. Let's say the worst thing would be losing your job, for example. Yes that would suck. In this sucky economy, it would really really suck. (Sorry Mom, I know you hate that word, but I just had to use it here!!) But would losing your job mean you are any less of a person? Would it mean that you aren't wonderful, smart, loving, beautiful, etc, etc? Of course not! You would still be You. And as Fred & Ginger said, "You pick yourself up, dust yourself off, start all over again," and you would then go out and find an even better job. Or you decide to rethink your career entirely! And this mentality can be applied to whatever it is you are most afraid of- even if it DID happen, you would still be You. You would find ways (possibly after some tears, some yelling, lots of support from your loved ones, perhaps even therapy!!) to be happy and make a new path for yourself. Because let's face it, the alternative of feeling sorry for yourself, constantly feeling anxious, dreading each and every day...that is no way to live.

I will share a dirty little secret. Ok, it's not really "dirty" but secret nonetheless.
I had started to become really-super-neurotic about taking my medication, especially new medication. Sometimes I would get panicked before my nightly meds, or right before I had to do my injection I would start hyperventilating, feel lightheaded, the works! (Dad, I know how shocked you are that I had to get out the paper bag to breathe in! haha) Anyhow, in my intelligent brain I knew how ridiculous this was. The chances of having an adverse reaction to a drug you have been safely taking for a year is slim. It happens, but rarely. There was no cause for immediate concern, and yet I couldn't help myself! Something HAD to be done here. This had to stop.

So I said to myself, "What's the worst that could happen?"
"Well," I told myself, "You could anaphylax and die right here on the living room floor, as your poor husband stares down at your lifeless body and your bipolar cat gnaws at your lifeless hair, which is beyond weird, because though my hair smells good, it can't taste that good and yet cats seem to love..." and suddenly the whole thing just became so ridiculous I couldn't help but laugh.

And that is the key: the ability to laugh at yourself can make all the difference in the world. So now when I try a new med or when I start to feel the tightness in my chest before my injection, I have a new little mantra (which WILL remain secret!) and it always makes me laugh at myself and reminds me to never Never take myself, or anything, or anyone TOO seriously. The world isn't out to get me, though it has sometimes seemed that way :-) It is just trying, though often in very strange ways, to make me a better person.


Monday, August 4, 2008

Save the Date!

I am so behind on so many things I don't even know where to start. Fortunately I know where to end, hence the blog title. Keep reading!

This summer has been so difficult- more than ever before I have felt as if I am constantly running to keep up with the rest of the world, and yet no matter how hard I "run" I always end up in last place. Or maybe second to last place :-) The heat has affected me so much more this year. Maybe I was still too Dx-Stunned (Diagnosis-Stunned) last summer and I didn't notice it so much. Or maybe this summer really IS hotter, or maybe I am just getting older and it has nothing to do with MS. Or maybe my MS is getting worse?? Enough already. You could get dizzy thinking about the "Why". It is what it is. Don't know why. I will allow myself a 15 minute pity party. Then I will move on. In Summary, this summer has been kicking my butt.

I turned 29 a few weeks ago. It was mostly a blur. I got hit with a bad cold that then became a bad sinus infection. I felt so horrible the week/week after my birthday that I never even got around to putting all my Wonderful cards up on my cabinets, which is one of my favorite things about birthdays. they are all still sitting there, in my lovely Kosta Boda bowl (a wedding present from my mommy) so they look nice, but still. You know things are rough when the cards don't make it up to display! Anyway, I treated the infection with antibiotics. it got better, then it got worse again, switched antibiotics. Hoping for the best. I have gone through so much Mucinex, Afrin, Dayquil, Nyquil and Kleenex that I should have bought stock in them all! I have to remind myself that the whole point of Betaseron (aka Wonder Drug) is to sorta suppress my immune system, so to speak. And that is what you do for an incurable autoimmune disease. So why then, am I so surprised when A) I get sick, B) it takes longer for me to get over being sick. I am On Immune Suppressants. DUH! At any rate, being sick before, during and after your birthday + the hell that is Atlanta in July just didn't leave me with the best birthday ever. But it is only a birthday. I can try again next year :-)

Chris and I are fast approaching a busy wedding season with 3 weddings in a 5-week span. It is exciting and I have to remember to pace myself accordingly. Especially while it is still so darn hot! Chris bought me this amazing thing called a cooling vest:
It is this vest filled with crystal things that you activate and they turn into gel ice packs. You keep it in your freezer then take it out and put it on. It is all about keeping your core temperature down. When MSer's core temps get too high, it is like an electrical system overheating and shutting down, or causing crazy malfunctions. I look like a member of a SWAT team wearing it, but it really does work. And don't worry my brides out there - I will NOT wear my cooling vest to your wedding! :-) Though my next project may be to create a more fashionable chic cooling product.

So now onto the good stuff:
Save the Date!
2008 MS September Safari
Saturday, September 27th
Zoo Atlanta

I am very excited to announce that I am chairing a new NMSS event! We wanted to do something more family friendly that kids (and kids of all ages) could enjoy. It is a first time event, so we are still working out all the details, but mark your calendars now! 

I would love to have lots of Red Shoes there to support MS and to enjoy Zoo Atlanta. OR if you have a group of people (church groups, daycare groups, sports teams, etc, etc) that you think would like to be involved and start their own team, that's great, too. The more the merrier. 

And of course this IS a fundraising Safari...we are exploring for the cure! Details to follow, but what a great way to get kids involved and learning about charities, philanthropy...ok, maybe a 6 year old isn't ready for the vocab word, "philanthropy", but you get the idea. And I gotta tell you - No One can raise money like kids can. Seriously. Did you SEE Louis Nanda's WalkMS webpage? He raised some serious money! How can you say no to an adorable 2 year old asking you to support a good cause for his "Aunt" Caroline??

So info coming soon to you all via email (since I know only 8 or 9 of you are out there actually reading this...Hi Adele!) Hope you will join us. It will be a fun event and hopefully by 9/27 cool enough for me to enjoy the Zoo as well. if not, no worries - I will be wearing my sporty new cooling vest, and my red shoes. of course. :-)