Wednesday, December 2, 2009

"Everything Happens For A Reason"

I've always been somewhat ambivalent towards clichéd phrases. On one hand, I like them. They get across your point, without having to explain it in great detail. On the other hand, they sometimes seem very trite, because unfortunately, a vast majority of clichéd phrases are used when times are tough.

I believe in fate, yet this phrase can come across as a five letter way of telling someone that the crap they are dealing with is really part of some big master plan. But when people are dealing with crap, hearing that phrase doesn't always help them.

Fate must have known my ambivalence towards this phrase, as it has recently been throwing it in my face, and I have just had to laugh at how strangely true it has become. I'm certain that I do not yet know all of the reasons that I was given this disease, but a few have been making themselves known lately.

If you know me, you know I love quotes which also includes song lyrics and lately this song keeps swimming through my head:

Half of learning how to play
is learning what not to play.
And she's learning the spaces she leaves
have their own things to say.
And she's trying to sing just enough
so that the air around her moves.
And make music like mercy
that gives what it is
and has nothing to prove.

She crawls out on a limb
and begins to build her home.
And it's enough just to look around
to know she's not alone.

- Ani Difranco

If I was the tattooing type of person I would probably tattoo these the phrases somewhere on myself right now. They remind me that, regardless of MS, we all have to learn at some point in our lives to Slow Down. Sadly, none of us is immune to aging, and it has a funny way of creeping up on you and forcing you to take a different pace. Until the MonSter entered my life, I wa always busy - working at my regular job, teaching kids to sing and dance in my spare time, there was always a bridal shower or a baby shower to throw or attend, or a wedding to sing at, our huge family and many friends to socialize with... I was overbooked and overextended yet somehow I never minded because I had boundless energy to do the many things I loved, the many things that made me Caroline.

I've been forced to learn a life lesson, perhaps too early, but an important lesson nonetheless. Sometimes life is about learning what NOT to do, "what NOT to play"... Not about stopping, certainly not about giving up, but about "trying to sing just enough", finding the joy in doing less and yet knowing you are the same person you have always been regardless of what you don't accomplish or do accomplish.

It's why I love that phrase "crawl out on a limb" because somehow it encompasses the idea of reinventing one's self. I think there are few things more frightening than the thought of shedding the skin of who you were in order to become who you want to be. Change is really, really scary. Giving up my busy, busy life, my many activities and many of the things I love in order to accept my current limitations and to accept who I need to be right now has been both terrifying and extremely humbling. But in it I have found new things I love, different types of joy, and the unbelievable power that lies in allowing yourself to be weak, even vulnerable - both words I previously detested, but have grown to realize are actually crucial in order to grow, in order to become the the best possible version of yourself.

Having bad balance, an uncooperative and rebellious left hand, terrible brain mud, pain, spasticity, dizziness, numbness and unfathomable fatigue have all but forced me (even though I am extremely stubborn) to ask for more help with more things than I ever thought imaginable. The stubbornness, the pride-swallowing, the fear of rejection, the fear of burdening those I love have all been met with nothing but open arms and willing hands. I've discovered arms I never knew were open. I've learned that sometimes allowing yourself to be vulnerable gives other people permission to be vulnerable with you, and it is in that space that real friendship grows.

I believe now that I needed to slow down. I believe that I was meant to go back to school and earn my college degree and that fate led me to Oglethorpe and to meeting people there that have filled my soul with joy. I believe that it's on purpose I'm struggling so much right now, because it has allowed me to reconnect with old friends, forge relationships with new ones, and become closer to people I never knew how much I truly needed until now.

And I guess that's the point. It's not about what I do or don't do. It's about just being, about who I want to be, about who I am when I'm with the people I love that love me.

I'm still learning and I'm still terrified and I'm still struggling. But some days it's enough just to look around and to know that I'm not alone.

Friday, September 25, 2009

Princess Caroline Marches On

it has been a pretty rough week here in the kulinski household. i have spent 4+ hours a day for the past 5 days at shepherd center receiving my ivig infusion which is our plan b attempt at ending this relapse. you usually don't see results until 5-7 days after the infusion ends, so next week will hopefully make up for this horrible week with some improvement in my symptoms. i have continued getting worse this week and it is rather scary and highly frustrating.

you may have noticed my sudden disregard for capital letters? in addition to the lower half of my body staging a coup, my left hand joined the dark side this week as well. typing on a keyboard, playing piano, and attempting to hold anything with my left hand has become nearly impossible. i still have some control over my thumb and pointer finger. the other three are living on some alien planet and refuse to do anything i tell them. talk about twilight zone! imagine if you will, writing an email and suddenly your left pinkie simply will not hit that shift key. no matter what you do, it rudely ignores you. so until further notice you may notice this absence of caps. it is going to make this semster at school rather interesting if this continues. i am a touch typer. i type well and quickly. ahem, i used to touch type. when your left hand is completely numb and 3 out of 10 finger aren't working, it severely diminishes your typing speed. i may have to start dictating emails, blog posts and schoolwork to someone willing to type for me!

don't even talk to me about how upset i am over not being able to play piano right now. i have always run to my piano when i am happy, sad, angry or scared. not being able to play right now feels like someone just went ahead and choppeed my whole arm off. i just have to believe that this will get better and whatever this is, it isn't permanent.

in the midst of such an awful week, i had a lot of cheerleaders. i don't know how people survive things like this without cheerleaders and i am lucky to have so many. by the time the week ended, the shepherd nurses were saying i had "an entourage"!! many many thanks go out to the chauffeurs and visitors who helped me pass the time while hooked up to tubes: my friend bethany spent monday morning with me, chris spent all day tuesday with me, alice (and her adorable boys, louis & adam) drove me and took me to chickfila on wed, thursday my sister-in-law betsey spent all day with me, helped me by typing while i dictated a paper outline to her, drove me to lunch and stayed and watched a movie with me. my mom was with me all day today, brought me lunch and yummy treats and made the time fly by.

if the entourage wasn't enough, my phone rang endlessly off the hook with people calling to check in, offering to help, or just leave me a nice voicemail to brighten my day: thanks barbara, dad, sheryl, van, uncle jim, beth, angela, karen, grandmother, granddaddy & george. tiffany & steven brought over goodies and kimmy brought dinner and did all my laundry for me. (it is surprising hard to fold clothes when one hand isn't working!)

i am truly blessed to have so very many people who care about me. i don't know what i did to deserve them all.

also the nurses and staff at shepherd are so incredible to me. they take such good care of me and even find ways to add fun into an otherwise dreadful experience. on wednesday, they appointed me "princess caroline" for the day and gave me a tiara to wear. i was the only patient lucky enough to be in the infusion room every single day, so it earned me that royal title!

i am relieved this week is over. i am trying to remain hopeful for the week(s) to come. i just wanna get back to school, get back to some sense of normalcy, even if my body is feeling quite far from normal. i missed the majority of my classes this week. all my professors were 100% understanding but i hate missing so much school. not only for fear of getting behind, but because school has become another happy place. when i am on campus, evwn with greg, i am just another normal student trying to get an education. i love being there. it fills my soul with joy. and i need as much joy as i can get right now!

keep your fingers crossed, say a prayer, do a dance, say a chant...whatever you think might help this medicine to work and finally end this relapse-from-hell. october is one of my favorite months and i would prefer to enjoy it relapse-free and feeling better.

Monday, September 21, 2009


I have a new man in my life.

It is likely that in the coming days (weeks? months???) if you spend any time with me, you will meet this new person. We are quickly becoming inseparable.

His name is Greg and he is in this picture:

No, it's not Omar Epps, or Dr. Chase, or even Robert Sean Leonard. And sadly, it's not Dr. House either. See that awesome cane with FLAMES on it? That's Greg. I have named him Greg because 1) I name pretty much all inanimate objects; and 2) because Dr. House's first name is Greg.

So Friday was a big day in Greg's life. He made his debut at Oglethorpe University. I had no idea what would happen, what people would do or say. Would they stare? Would they look away too quickly? Would they notice or not notice? Would I have to answer a bunch of questions and tell person after person, "I have MS." It's also a pride issue. I am former dancer that used to have a gorgeous triple pirouette and, at present, I require the use of a cane to walk to my classes without falling directly on my face. Not knowing what to expect from my fellow students and professors just adds to the potential humiliation. But here are the day's highlights:

8:45 a.m.: Arrive at school, park car. Greg and I walk slowly and carefully to the building. I realize that between holding my bag, my cup of tea and Greg holding me, I am left with no free hands to open the door. A young man comes up and opens the door for me. As he follows me up the stairs he says, "Nice cane. I like the flames." Score one for Greg.

8:50 a.m.: Arrive in my French 201 classroom. My French professor has recently been informed by me, via email, that I have MS and am currently fighting the Relapse From Hell. (And I will preface this by saying that this professor and I get along really well AND we are both extremely sarcastic!) As I enter the classroom, he sees me and starts nodding his head in approval and says, "Whassup, Cripple!" Now, I hope no one finds this too offensive, but the "cripple" found it utterly hysterical...then again both our senses of humor are a bit twisted. He, too, comments on my cane and says it is "bad-ass." Score two for Greg.

9:55 a.m.: Two more young male students pass me in the hall and say, "Nice cane. Like Dr. House," and "Sweet cane." A student who was in a class with me last semester sees me and runs over to see if I am "okay." I have to tell her I have MS, that it isn't playing nice and that if I have to use a cane that it "had better be a badass one." She responds, "Caroline, you're so awesome." Score three, four and five for Greg.

10:50 a.m.: Drive to building for next class, get the good handicap parking spot. I get close to the classroom door. A group of students is somewhat near my classroom. One of the students notices me, he stops his conversation, and without saying anything to me, politely walks over and opens my classroom door for me (I realize there is a chance he thought I was a teacher....a disabled teacher at that, and so opened he door for me out of fear/respect!); however, perhaps he just realized it would be a nice thing to do. Six points for Greg!

While all these little things might not seem like much, for a woman who prides herself on being independent and never imagined herself needing help walking at age 30, these small gestures meant the world to me. Every compliment made me feel safe and accepted when I needed it most. It was a day filled with extreme physical and emotional pain, not to mention feeling defeated and insecure and all these people at OU (most of them strangers!) made me feel that I wasn't a freak or disabled or defeated, but that I was just a girl with a kickass-looking cane.

PS - Starting an IVIG infusion today in hopes that it might get this horrible relapse under control. Will be hooked up to tubes 4 hours a day for 5 days - aren't you jealous? Haha. Cross your fingers that this works...because if it doesn't, I am going to have to start investing in more canes. And let's face it, they are really a kind of accessory, and you know I can't have canes that don't go with all my outfits!!


Sunday, August 23, 2009

Whatever gets you through the day

It is not an unusual occurrence for people to ask me, "How are you feeling?" Sometimes this is merely formality, much like, "Hey, how are you?"

But people also ask because they love and care about me and are truly interested in how I am feeling that particular day. I often find myself responding with, "Hanging in there," or something with at least a slightly positive note to it.

I do this for two reasons: A) Hearing someone you love tell you that they are actually feeling quite horrible, physically and/or emotionally...well it really feels crappy to hear that, especially when that person has a chronic disease and feels crappy...well, a lot of the time. This actually ties in with B) I hate disappointing the people I love, even in the slightest bit, by acknowledging that I am not feeling well and that these various diseases are, at present, kicking my...well, you know.
And while I have no doubts that there are a great many people out there that care for me, the reality is also that people have their own crappy stuff to deal with. Life is full of horrible, messy, painful things and at any given moment people are surrounded by their own demons and their own trials to overcome.

With some diseases you hear people say, "I'm going to beat this thing!" or "I will get through this." I desperately want to be able to say, "I am going to beat this thing." I want to be strong. I want to be a fighter. But how do you "beat" something that is incurable and progressive (and that is not exactly responding as we had hoped to the treatments that we keep throwing at it)?? It is one of the frustrating things about chronic diseases. They are a marathon...a never-ending marathon with lots of really steep hills and no finish line.

Many days I feel as if I am just treading water. I try to keep my head up to avoid another relapse...and yet they still manage to find me. I swim as hard as I can to keep my corneas from drying out and inevitably end up with painful inflammation every 4-5 weeks. I balance the various physical pains alongside my sanity and I fight to hang onto hope while battling the MS-depression-demons that are often chemically altering my brain. I find myself grasping onto anything I can if I think it might help me float awhile longer.

Today I baked.
I baked cranberry scones. I baked peanut butter shortbread cookies. Then I put a pork chop with yummy sauce in the crockpot for dinner. Then I cooked some chicken so that I can chop it up and eat it in salads this week when I am too busy with schoolwork to come up with anything for lunch. If you know me (and if you are reading this, you most likely do), you know I do not consider myself a cook of any merit. I am no Martha Stewart. My friends Alice and Steve sent me an apron that has a big treble clef (a symbol used in music) and says "Treble in the kitchen." I love the musical reference, but I also love the fact that it is true! I am trouble in the kitchen! And yet today I was Martha Stewart and Paula Deen and Julia Child. I put on my "treble" apron and mixed dough and kneaded it with my hands and rolled it out and cut it into adorable shapes. And standing there with my apron on, my hands immersed in dough...well, it just felt good. It felt like playing with play-doh, getting my hands all messy, focusing on nothing except the wonderful feel of cookie dough.

Sure, I have a list of things I need to be doing, that I should be doing. But sometimes you gotta tell the list to take a rest and spend some time doing exactly what you want to do and nothing more. Maybe you need to drink tea and read a few chapters of a novel. Maybe what you need is to be a couch potato and catch up on all the things on your TiVo. Perhaps you need to hire a sitter for the kids and take yourself to see a movie. Maybe what you really need is to get out some coloring books and some crayons and spend the afternoon letting your inner child play (right, Jan?). Or maybe you need to bake lots of fattening, carb-filled goodness.

Sometimes you just gotta listen to your heart and ask it, "What would make you feel better? What do you really need today?" And then you ignore your brain telling you to do the laundry or finish that project at work or a million other things it is yelling at you to do.

In times of rough seas when your arms are tired of keeping you afloat...during those times, my motto is: Whatever gets you through the day.


Wednesday, August 19, 2009

The 7 Dwarves of Solu-Medrol

Day One on Solu-Medrol.
It is usually on Day Two that I say, to myself or to no one in particular, "No! I cannot take another day. I am skipping Day Three. I don't care!" I don't know, but right about now I am tempted to start yelling No! already and I still have 2 days to go. And then I remember that Days Four, Five, Six and Seven are no walk in the park either, spent still reeling from the steroid effects and then coming off being pumped full of steroids, leaving me with serious weakness, muscle cramping and more.

In its defense, I am partially blaming Solu-Medrol for the craptacular relapse symptoms I am experiencing as well. It has been 10 days and unfortunately they have grown exponentially and while the numbness and such is annoying, it is the nerve pain, arriving like an army to trample all over my body, that has me unable to sleep. Well, that and the heart pounding, elephant-sitting-on-my-chest-feeling and steroid induced restlessness. But I think its mostly the pain right now. Much akin to a blowtorch firing at various body parts for undetermined amounts of time.

So the idea is that the Solu-Medrol will make the Bad Relapse Man go away more quickly and permanently. But while I am still able to make jokes and find the humor in things today...but very soon my body will be inhabited by a series of...well, dwarves.

First the pharmaceutical info:
Oral steroids ake oral corticosteroids (ex:Prednisone or the Medrol Dose Pack) are very powerful anti-inflammatories. What's really cool is unlike certain asthma inhalers, which are steroids that go directly to decrease respiratory inflammation, the oral corticosteroids affect the whole body. They are used in all types of autoimmune and rheumatic diseases, Crohn's disease, they can help treat penumonia and skin diseases as well as some allergic reactions. When you think about it they are pretty incredible drugs. They have a price to pay, including a Very long list of short-term and long-term side effects if used on a frequent basis.
Still, they can treat diseases that nothing else out there can treat, and they can drastically improve quality of life for the patients of such diseases.

I digress from the dwarves...
(To paraphrase one of my favorite authors, Stephen White):
When someone has bad bronchitis or bad allergies or a rash they are often given oral steroids as a method of treatment. Common dosage for these oral drugs ranges from 5mg to 50mg. When an MS patient is being treated for an acute relapse, they are given 1 gram of Solu-Medrol, infused directly into their veins...for 3 days in a row. So grand total: 3 grams. Since I just passed my math class in college, I can tell you that is 20 to 200 times the normal daily amount prescribed. In fact, when I tried the high-dose oral steroids back in Nov, my doc actually had to write out "six hundred milligrams" because too many times a pharmacist has assumed the doctor didn't have his coffee that day and miswrote "600" instead of "60". The point of all this being, even 50mg of steroids makes you irritable and jumpy and nervous. 1000mg into your veins, well, you can use your imagination, because I sincerely hope you never have to experience it firsthand.

This is where the dwarves come into the picture. As all these drugs are being pumped into the MS patient's body, it quickly becomes apparent they he/she has been possessed by all 7 dwarves. Unfortunately, they are not the same 7 dwarves that you might remember from that lovely fairy tale with Snow White. Oh, no. There are some familiar faces such as Grumpy and Dopey. But there is also Angry, Bitchy and Cranky. Sad to say, Happy and Sleepy will make very few and very brief appearances over the 7 days.

If you live with a person undergoing such treatment you quickly learn that in these 7 days the patient will lose most of his/her sense of humor, ability to take anything in stride and everything you do will be wrong, irritating or downright infuriating (Sorry, Chris. You know I really REALLY love you, right??) But it's not the patient's fault! It's those damn dwarves, I tell you!!!

I would sign off saying I am heading to bed, as most normal people would do at such an hour. But I would be lying, knowing that the next few days I will be catching sleep whenever the dwarves and the steroids allow, in snippets here and there. I will make a conscious effort to channel Happy whenever possible. And I will remind myself as often as I can that This Too, Shall Pass. (Thanks always for that one, BBT). And by next week maybe I will feel normal again. Well, not Too normal. I mean, who wants to be "normal", right? ;-)

Monday, August 17, 2009

Rockin for the cure

Thank you to all who were able to attend our event last Saturday and help us raise some $$ for a wonderful nonprofit organization in a tough economy. We had a great turnout and hopefully everyone had a great time. All the band members played and sang like true rock stars, my neurologist made a special guest appearance and my voice held up long enough to sing backup on five or six songs and sing lead on one.

Most importantly, we raised around $4,500. Not bad at all.
My voice is still unreliable. Still scratchy and hoarse, still having problems with volume, but I expected as much. I asked more of it than I should have right now. By the way, my neuro has referred me to the Emory Voice Clinic to be evaluated and start voice therapy with their specialists. Not only are they knowledgeable in all kinds of voice disorders, they also work with singers, which I think will be helpful since singers use their voices in different ways than non-singers. As upsetting as the voice issues are (and they are very upsetting), I have also been visited by two new symptoms that are quite puzzling.

Numbness (the "technical term" is paresthesia) is a very, very common MS symptom. Something like 90% of MSer's experience numbness at some point in their journey. When nerves are damaged, as they are in MS, it can result in numbness in your arms, legs, midsection, face or wherever it wants. And the really puzzling thing is that the numbness can occur in varying degrees. It can just be a decreased sensation where your foot feels funny, and you can't exactly feel the ground. Sort of feels like there are a bunch of pillows attached to your feet. Or numbness can mean total numbness, very similar to how it feels when your arm or leg or foot falls asleep. That numb, tingly, pins-and-needles feeling.

By last Sunday morning, I was numb from my hips all the way down through my toes. By that evening, my entire abdomen and most of my back had joined the party, so I was basically numb from the chest down. In addition, I am experiencing something called Lhermitte's Sign. Something akin to sticking your finger in an electrical outlet, I would imagine. It isn't painful, per se, just extremely uncomfortable when it happens. And it is happening every time I bend my neck forward even the slightest bit.

To say that all this feels bizarre is quite the understatement. I talked to my nurses twice last week and we are "watching-and-waiting" to see if this is a pseudo-exacerbation (i.e. brought on by an infection, stress, fatigue) rather than a true relapse. To be on the safe side, I booked an appointment with the nurse practitioner.

The whole thing terrifies me. I don't know that I can emotionally handle another relapse right now. I really, really need to make it longer than four months without going into Relapse-Land. I am exhausted with the physical and emotional turmoil of being an "unstable" MSer. It is frustrating to feel that you have so little control, except for the option of cutting out all fun activities and avoiding all stress (good or bad) in hopes of staying "stable."

So in theory, I could stop participating in anything that might be stressful to my body, including singing with my band, helping my stepdad/stepsister with their shows, volunteering for and raising $$ for the NMSS, going out to dinner with friends, going to school, doing anything that involves being outside in the summer...the list could go on. Unfortunately, that's just not my style and I have been fighting it tooth and nail for two-plus years. For a former social butterfly whose social/work/volunteer/event calendar was always maxed out, it is devastating to feel I have to say no to so many things I love in order to "maintain" my health. Which is comical, because what is it I am trying to maintain? Maintain this instability? Regardless of what I do/don't do I seem to be facing relapses every three to four months.

If I hadn't sung a few songs with my band on Saturday, would I be able to feel my body right now? Or would it have happened anyway? I am sorry if I sound angry, but it's mostly because I AM angry! I just had a clean MRI. Shouldn't that buy me at least six months of no relapses and no crazy things like my entire body going numb?? I am really trying not to let it all get me down, but it's difficult sometimes. Like many things in life, there is no black and white with MS. It's a lot of gray and you just gotta make the best decisions you can and hope for the best.

To look on the bright side:
1) I can't feel my injection needles pierce my skin right now, which is very nice.
2) The anti-acid reflux diet has gotten me down to the same size I was my senior year in high school. So even though I hate this stupid GERD diet, it got me back into my skinny jeans...and then back out of my skinny jeans because they got too big.
3) Hmm. I don't have a 3 yet. I will keep working on one...

Until I can get more info, I am trying to lay low, gearing up for classes to start back on the 24th. I am trying to avoid the heat and I am being super careful when I walk because you never realize how much you rely on feeling the ground until you can't feel it at all.

And since I can't feel much of anything below my chest, several times a day I have to look down to make sure I am actually wearing pants. I mean, I haven't yet forgotten to put on pants, but when you can't actually feel the pants on your body, it's always best to double-check these things. :-) C'mon. That was funny, right?
Even on really bad days, ya gotta still find the humor in things, ya know?

PS- As this article went to print, the common relapse-partner-in-crime Nerve Pain has arrived on the scene and the author has just returned from her appt at Shepherd where all parties have agreed that 3 days of IV Solu-Medrol would be the wisest choice at this time. Infusion should begin in the next 2 days, followed by 3 days of sleeplessness, irritability and serious carb craving. This will then be followed by 3-4 days of weakness, more irritability, continued carb cravings and a small pity party. Happy thoughts, smiles, sympathy and carb-related foods are all welcome at any time. :-)


Monday, August 3, 2009

Don't forget this Saturday, August 8th
Paradocs will be rockin' for the cure
at Cowboys in Kennesaw
all proceeds to benefit the National MS Society

Whether or not my voice will hold up through a whole show remains to be seen, but no matter. I will be there rockin for a good you should come rock with us, too! Talk about an economy-friendly show - only $10 buys you a whole night of entertainment AND its tax-deductible! :-) Hope to see you there. XOXO

Sunday, July 19, 2009


Today is my 30th birthday, which I find completely strange. I do not feel 30. Actually, some days I feel far far older than 30 (MS has an uncanny way of making you feel about 85 some days!) but usually I still think I am in my early 20s or something. Funny how that happens, the whole aging thing. hehe.

I did receive a really good early birthday present last week. I had my MRI last Tuesday. I have been on Copaxone for 6 months now, so we looked into the old noggin to see how it was working and as of right now there are no new lesions and no active inflammation. So it would seem the Copaxone is doing its job.

While I am much relieved to have a good MRI, I would be lying if I didn't say I was also wary. It has been such a brutal rollar coaster for the past 2+ years that I hesitate to get my hopes up only to have them dashed again.

I have had a relapse pretty much every 4 months without fail. It has been 3 months since my last episode and I am truly holding my breath and I probably will be until well into the fall. I am desperate to be able to say I have made it 6 months without a relapse - what a milestone it would be. And yet there are people that goes years without one. I am so jealous of those MSers that I cannot see straight. I feel guilty that I am not rejoicing more over a good MRI, but I have learned that a clean MRI doesn't always correlate to a stable disease. Certainly, it is far better than the alternative. I think I just need time to prove to me that I, too, can be stable for at least half a year. And then slowly I will rejoice little by little as this medicine proves to me that it can fight off this disease properly.

Nevertheless, and in spite of my fear and wariness, as far as 30th birthday presents go...a clean MRI is a pretty good one.

Wednesday, July 8, 2009

Symptoms vs Side Effects

One of the many annoying things about any chronic illness is that you never know if a new "symptom" is really a symptom or if it’s a side effect of one of the many medicines you take to manage your "symptoms."

Example 1: I take Lyrica twice a day to help with the nerve pain I get in my legs. While it manages my pain well most of the time, it also can make me quite dizzy. At times, it feels as if it could even be vertigo, which is one of my common relapse-approaching symptoms. Or maybe it’s just the Lyrica? How do you know?

Example 2: The new arrival of chronic hoarseness. Could be a symptom of the reflux? Could be a symptom of the MS? Could be a side effect from Copaxone? Jury's still out on this one.

Example 3: The dirty word: Depression. It’s everywhere, right? Half the country is on some sort of anti-depressant. There are an abundance of commercials telling you that "depression hurts" and their medicine can help. Well, it is a known fact that "depression" is one of the top symptoms of MSers everywhere. However, is it a symptom of the MS itself? Or is it because many MSers are on one of the disease-modifying drugs and these DMDs are notorious for causing depression? Is the suicide rate so high in the MS community because having a degenerative disease really sucks or is it because we are chemically imbalanced by the drugs that are supposed to be slowing the disease progression? Jury is still out on this one, too.

A couple of weeks ago I felt myself begin circling the drain, so to speak. I wasn't myself. I was crying a lot. A LOT. And no, I am not pregnant. I was starting to feel helpless, hopeless and utterly exhausted with all this medical drama. I hit the proverbial wall, emotionally speaking.

I had hoped it would go away as quickly as it appeared, but no such luck. This was way different than the appearance of my occasional alter-ego, Copaxone Caroline. If it was her, she wasn't leaving. She was settling right on in for the long haul it seemed. And it had me feeling scared. Actually terrified. I didn't want to be this person – crying, anti-social, feeling desperate and hopeless and that I couldn't handle anything more without breaking apart.

I took all this to my doctors and they told me it could be just the Copaxone causing the severe change. It could be a combination of things. It could be the Copaxone plus the latest issue with my vocal cords has just really gotten me down. Whatever it is, it has been debilitating and exhausting and I hate it. It is SO not me. But I seem to have no choice except to picture myself on a surfboard riding the waves of depression until the sea is calm again. And I have to try and believe that it will be calm again and that this storm is not everlasting.

It is a good lesson for anything. No matter what kind of storm you are in, you have to believe that eventually it WILL end. Even when you can't see the sun you have to know it is there, just waiting for its chance to peek through the clouds and fill the land with warmth and happiness again. I am having a real hard time with this right now, and I’m certain I am not the only person who has ever felt this way at one time or another.

There is a song I heard for the first time in a vocal production class when I was at CCM. It was sung by my amazing classmate (who later became one of my amazing roommates). I still get chills when I think about Mary belting out these words:

When you see the storm is comin', see the lightning part the skies,
It's too late to run, there's terror in your eyes.
What you do then is remember this old thing you heard me say:
It's the storm, not you, that's bound to blow away.
Hold on, hold on to someone standing by.
Hold on, don't even ask how long or why,
Child, hold on to what you know is true.
Hold on 'til you get through...

So I am holding on, knowing that I will get through this, too.

And I am also trying to ask for help when I need it. It can be hard enough to ask for help when you can't see to drive or you can't tie your shoes (See my previous post on that here: Help is a 4 Letter Word). But somehow it is even harder when what you need is emotional support. There isn't any tangible action that can be done. Nevertheless, it is important, especially when battling some uber-depression, to ask for help, so that people know you just need them to be a little more "there" for you than usual. It is really hard to do, but I am really trying to let people know little-by-little (look! I am even sort of sharing now, right?) that I do need a little extra in the way of shoulders, cheerleaders, MS-haters and ears lately.

Everybody needs help sometimes, whether its a symptom or a side effect or just the repercussions of the glorious, yet often infuriating thing called Life.

Saturday, June 27, 2009

Even darkness must pass

The battle between darkness and hope...summed up perfectly by Samwise Gamgee:

It's all wrong...we shouldn't even be here.
But we are.

It's like in the great stories, Mr. Frodo, the ones that really matter. Full of darkness and danger they were. And sometimes you didn't want to know the end because how could the end be happy? How could the world go back to the way it was when so much bad happens?

But in the end, it's only a passing thing...even darkness must pass.
A new day will come. And when the sun shines it will shine out the clearer.
Those are the stories that stay with you.

But I think, Mr. Frodo, I do understand.
I know now folks in those stories had lots of chances of turning back, only they didn't. They kept going. Because they were holding onto something...

That there's some good in this world, Mr. Frodo, and it's worth fighting for.

Friday, June 26, 2009

GERD Your Loins

A couple of weeks ago I was trying to avoid doing math homework and instead watched "The Devil Wears Prada" on TV. In the first few minutes of the movie we see the über-intense character of Miranda Priestley (Meryl Streep) make her entrance into the Runway office as Stanley Tucci tells the office, "Alright everyone, gird your loins!" The effect is not only comical, but also frightening as everyone prepares for the intimidating editor.

Yes, this movie is totally fun and totally frivolous. But ever since I watched it, I have had that phrase stuck in my head. Not only does it crack me up, but I am finding it more and more pertinent.

Let's be honest. The past three years have been (pretty much) nonstop medical drama in my world. It started when I found a lump in my breast in '06 (later removed and deemed benign). I fainted, fell on my face and knocked out my tooth in '06 (a root canal and crown later, I’m much better). This was shortly followed by my MS diagnosis in '07 (with four nasty relapses to follow). My eyes stopped producing tears and I was told I have "possible Sjogren's syndrome" in '08. And two weeks ago (after many months of chronic hoarseness), I was delivered the news that I have GastroEsophageal Reflux Disease.

I have battled acid reflux on and off for years and always managed it fairly well, but for four to five months now my hoarseness has been getting worse and worse – as are the feelings and pain that go along with bad reflux. It is not an uncommon disease, really. Some people experience it intermittently, others more chronically. The scary thing is that if it goes untreated for too long you can end up with permanent damage to your esophagus and/or vocal cords (not something a singer ever wants to hear).

Last week my GI doctor did an upper endoscopy, where they send a camera into your esophagus/stomach, and confirmed I have really bad reflux. Apparently, I am "too young" to have it as bad as I do. My response is always the same: Aren't I too young to have most of the crap I have? Diseases are not age-discriminating.

As I came out of anesthesia he says, "We need to hit this hard and hit it fast," a.k.a. do everything possible to get this settled down so my esophagus and vocal cords can start healing.
We are trying a new medicine and I have all these diet restrictions, too. I have had no caffeine for two weeks and after the sixth day my caffeine-withdrawal headache finally ended. I cannot have spicy foods, tomatoes or tomato sauces, or garlic or onions. No citrus fruits, no fried foods or super fatty foods, no alcohol, and no chocolate, among other things. Also, I am supposed to eat smaller portions, not letting myself get too full, which can also be a reflux trigger.

Sadly, after two weeks of new meds/new diet, I have had worsening of my hoarseness. I went to the ENT today and he sent another camera down my throat (actually through my nose – Ouch!) to look at my cords. He said they were surprisingly un-swollen and not red at all. This is good. He said that sometimes other stomach enzymes pop up and mess with your cords, even when you aren’t making crazy amounts of acid. He then showed me a screen shot of my cords as I was attempting to sing a lovely E with a camera down my throat, and my right vocal cord was all the way at center attempting to make contact with lefty, but lefty wasn’t cooperating and was lagging behind. He said this was not normal. It could be some tiny cyst or something hiding out on the left cord, or it could be “neurological” (I felt as if I was totally on House, the TV show). It was as if my cords were out of sync with one another and not communicating, and when your cords don’t come together, you certainly would wind up with an unclear vocal sound. (15+ years of private vocal lessons taught me at least that much!)

So now I have to call my neurologist (in case it’s a new MS symptom), call my rheumatologist (because it could also be throat dryness associated with Sjogren’s that is causing all of this), keep my follow-up with the GI Doc (in case it is reflux-related) and look into meeting with a speech therapist (in case none of the above come up with a solution, we’ll start working on ways to get my cords to work together again). In the meantime I am really just hoping it goes away magically on its own, but I’m having a hard time thinking that will ever happen with any of my wacky nutjob symptoms.

More than anything, I really truly hate the feeling of dread that I find myself fighting as I think, "What next?" With three years of medical drama after drama after drama, it is difficult not to see a pattern here...not only in my MS relapses, but in the seemingly never-ending new symptoms accompanied by some new diagnosis.

Should I be starting a betting pool for what will appear in the next 6 months? And can I put in a vote for something like an ingrown toenail or a mild case of hives or something? God, how horribly cynical, yet slightly funny.

I find myself "girding my loins" for what will come next. It is a truly awful feeling, and I don't yet know how to manage it. They say that fear is a great motivator and so I am hoping that my fear of my unpredictable medical future can help motivate me in some sort of positive way.
And seriously. This thing has just got to turn around because I talk too damn much to not have my voice operating at 100%.

(But in the meantime I am supposed to be on “vocal rest” as much as possible right now to give my cords the best chance possible to heal, so know that my phone time is limited at present! And with my email time limited due to all my eye issues, I am quickly running out of ways to communicate! Snail mail? Carrier pigeon?? Smoke signals???)

Sunday, May 31, 2009

As promised...

As most of you know by now, I have trouble with my eyes. After 2+ years I still have constant double vision, which is sometimes corrected by prism glasses and/or by closing one eye. Sometimes not. I also now have this severe dry eye thing (cause still unknown, but my docs are now referring to me as "Possible Sjogren's Syndrome" which cracks me up. I mean, can I also be a "Possible Rock Star"? or "Possible Queen of the Universe"? I mean, really aren't I a "Possible" anything-I-want-to be??? haha. Certainly I would choose something better than "Possible Sjogren's". I digress....). So the dry eyes are so bad that my corneas have become involved and I have to have them checked alot for signs of scarring, blah blah. So when your eyes are severely dry they hurt alot and can cause blurred vision to boot.

By about 8pm on any given day I have a lot of trouble seeing. This completely clashes with the fact that, much like my dad and my brother Van, I have always been a night owl. I love night time. I am most often hit with the urge to write after 10pm.

The point (long-winded, mind you) is that I often end up writing blog posts at 11PM with my eyes basically closed, preserving moisture and not being distracted by two of everything on the screen. Fortunately I touch type fairly well. Maybe 80% accuracy or so. But being the perfectionist I am, I prefer 100% when it comes to spelling and grammar! So I have wonderful friends that proof-read for me and correct my typos, so I can better spend my limited eye power on things like, driving to the grocery store and dong my math homework! :-)

One of my "editors" is my dear friend Jen (who many years ago also taught me the power of shift+F7, to which I credit the majority of my A papers in college this past year!). Jen recently edited a post for me and along with her edit, she commented that what my blog needed was some pictures! So last week I took a few around the house of places I escape to when I need zen! Sorry, none of me yet, but maybe I will work up to that. :-)

In my "office" hanging above the window...
the 3 words that get me through good and bad days!

This is Oscar.
We got him and named him when I was 12 years old.
He has been with me ever since, even when I could only afford a tiny apartment, there would be a couch, a bed and Oscar! I still play as much as my hands and eyes will allow and it is truly one of the things that fills my soul with joy! Note that even Oscar has been decorated. Nothing in my house is safe from red shoes!!!

A shot from my office.
I am not obsessed or anything, right?

Standing in the doorway of my office.
My awesome new TV (thanks Chris!), plus several gorgeous Oz posters I have been given over the years (thank you Chris, Betsey and Angela!)

I will try to make more an effort to put fun pics up now and then. Thanks Jen for helping make my blog more colorful with your great ideas! (and sorry I didn't let you proof this one...I wanted you to be surprised!)


Wednesday, May 27, 2009

World MS Day

Today, May 27, 2009 is World MS Day!

Betcha didn't know that...that is probably because it is the first one!
A wonderful group of people all around the world got together and decided to form a global group to help raise awareness about MS.

So help us support the first annual World MS Day by registering yourself on the really cool World MS Map as a "friend of person with MS" or "family member of person with MS". It takes about 30 seconds and you will instantly show up on the map! (You can already see me in Atlanta, GA!) Go to:
Click on Register if you would like to add yourself to the map!

I only wish our map icons were little red shoes so I could truly visualize red shoes taking over the world!!!!

Thursday, May 21, 2009

Finding your zen

I believe my nurse practitioner said it best when she told me,
"Chronic pain is a real doozy."

I don't know that I ever gave chronic pain much thought. Sure, when I heard someone was in pain and that pain never really went away, my heart went out to them. Maybe I even wondered how they did it, how they managed it all. I felt sympathy for them. Sympathy is nice and all, and often all we are capable of. Being able to feel true empathy for someone is quite different and I now feel empathetic to those people that live every day managing some sort of chronic pain.

You don't realize just how much pain stresses your body physically, emotionally, mentally. It can raise blood pressure (which it did to me during my worst relapse last November) and it can cause other sorts of crazy things to happen. Nerve pain can really affect sleep, too, and as all new parents know, if anything can make you feel crazy fast, it is sleep deprivation!

In addition, nerve pain is another "real doozy" as it rarely responds to pain meds (like codeine, percocet, etc). Nerve pain just keeps right on going, no matter what you throw at it. For some people drugs like Neurontin and Lyrica can ease the pain a bit. For others you might as well be throwing water balloons at a forest fire.

Between the herniated disc, the MS and the Keratoconjunctivitis sicca (fancy word for severe dry eye, so dry it also affects your corneas), there is a lot of pain on any given day. I have tried alternative treatments as well as medicine (I prefer Lyrica, which takes the edge off the nerve pain). Biofeedback has been surprisingly helpful. I was skeptical at first and then saw myself hooked up to monitors and literally watched my blood pressure and heart rate slow down, less stressed simply because I was breathing correctly, slowly - the same type of breathing you use as a singer! What an amazing thing! It is a great tool in my arsenal of tools to deal with symptoms and pain.

I have also been doing physical therapy for my disc problem and since then am having far less pain in my left arm. What a difference it makes to not have pain 24/7 and instead have it come in waves throughout the day. It gives you a chance to catch your breath at least!

I think when you have something like pain you can't control with medication, you have to sort of approach it mind over matter. I mean, what choice do you have? You have to find your state of zen. Make peace with the pain. Because being angry at it just raises your blood pressure and makes the pain worse.

In the meantime, I am trying to find my zen, my peace with it all. Peace in living with chronic pain and with a chronic disease that causes horrible relapses with little or no warning. I try and find peace in this crazy economy where instead of once being terrified of bugs, my worst fear is now losing my health insurance. I try to be zen when my eyes are so dry and painful that all I can do is lie with them closed, listening to the television, or to books on CD. I try and find peace when Copaxone Caroline visits, ruining my usual upbeat mood, causing me to feel depressed and hopeless, only to disappear as quickly as she came, leaving me feeling normal and hopeful again. Medicines are crazy things, huh?

Take a moment and find your zen. Close your eyes during your stressful day and take 5 slow, deep breaths. As lame as it sounds it really does help! Or maybe your zen involves shutting the office door for five minutes to call your mom. Moms always have a way of making you feel at least a bit better, don't they? Whatever your zen is, wherever you find your peace, remember it so you can go back and "visit" it whenever you need to.

Personally, I like the deep breathing to manage really intense pain; I often treat Copaxone-induced depression with a movie ticket and big bag of popcorn. Escapism! And when all else fails, I go into my office upstairs (who am I kidding? it isn't an office - it is totally a "craft room") and I work on my scrapbooks, or handmade cards for people's birthdays or I watch a movie on my TV that Chris so graciously bought and installed for me. And slowly, the zen comes. And life is good again.

Even if you don’t have a chronic disease or chronic pain, you gotta take time to find your zen…especially in these times which are tough on everyone. If nothing else, just remember to breathe!

Friday, May 8, 2009


I am sorry this particular post is so late, but just had to take a moment to share...not only was Team Wearing Red Shoes the largest team in the Marietta Walk this year, with 57 members, but we were also this year's top fundraisers as well raising $13,491!!

Thank you ,Thank you, Thank you to all of our walkers, our wonderful supporters and donors.

I hope that we will only grow and grow each year with red shoes taking over the Marietta Square...then the state of Georgia...the entire country....maybe even the world!!!

This past Sunday was my 2 year dx anniversary, a day which I wish I could forget, but unfortunately I am very good with dates. It is a hard day for me, and filled with many emotions. Chris and I had a quiet day together, going out to lunch and going shopping and other small things to distract me from being bummed out.

There are so many wonderful days throughout the year that are worth celebrating: people's birthdays and anniversarys, holidays spent with family and friends. The anniversary of a diagnosis of an incurable disease is slightly less worth celebrating. It is more of a "this is the day your life as you knew it changed forever" and while I know that MS is just another card in my deck now, it has a way of finding its way to the top of that deck more often than I would like! The MonSter is such an attention-stealing drama queen!!!

So I have lived with the MonSter in my house and in my life for two years, and while I have had more relapses than I or my doctors would like to see, I also have not had any significant disability progression, i.e. I am at the same level of basic functioning that I was 2 years ago. And I am grateful for that, I really truly am.

It helped alot that the walk was so close to this icky day, and the memories of what an awesome day it was were still fresh in my mind. I mean, not only did we take over Marietta in our red, raise a TON of $$$ and have the largest team on the square, but I got to sing the national anthem!!!! That has been on my "lifelong to-do list" since I was around 10 or 11 years old! What a fabulous way to check that one off the list.

Thank you again everyone for making WalkMS 2009 such a wonderful, memorable day!
Lots and lots of love,

Wednesday, April 22, 2009

My Name is Mud

While the term "brain fog" is recognized as a synonym for "cognitive dysfunction" by Wikipedia, I have decided that I much prefer " brain mud".

Fog is light and airy, it whooshes in quietly and of course puts a nice cloud cover over everything so you can't see what is five feet in front of you. You grasp for thoughts and pluck them out of the fog, you walk through its cold dampness feeling pretty out of sorts and perhaps a tad lonely.

Brain that's a horse of a different color!
Mud is messy and dirty and sloshes around and gets all over your boots and your jeans and even splatters up on your face if you are trying to walk too forecefully through it. Before you can pluck a thought out of mud you have to dig your hands down into the squishy, gooey muddy mess. It is disruptive and infuriating and did I mention, messy??

I am definitely in the midst of a big ole brain mud puddle!

Though I am glad I chose to do 3 days of IV Solu-Medrol (it has helped a lot with my burning leg pain) the vertigo is still hanging on and the brain mud is making me crazy! It doens't help mattters that I have 2 big papers due and a final exam all in the next 10 days before the semester ends. Having a registered "disability" means I can take incompletes if I have to, but that really is a last resort. I don't want incompletes hanging over my head and stressing me out further!

I have been trying to write one of my papers today while I am home resting and I find myself with the complete inability to get thoughts out of my head onto paper and extreme difficulty concentrating. It frustrates me to no end! I know its only temporary and with each day the inflammation in my brain will lessen and I will start to feel better and think clearly again
Just ike coming out of a fog...
Or rolling out of the mud...and hopefully into a "hot and steamy, absolutely dreamy, finally out of trouble, bubble bath" :-)

Sunday, April 19, 2009

Chariots & Roid Rage!

In comedy, timing is everything. When I used to perform and act in shows I was always known for having superb comic timing. It would seem that my timing is still in tact, though at the moment it feels more like dark comedy!

I have been battling vertigo and "brain mud" for well over a week, and last Wednesday afternoon both my thighs lit on fire from the inside out and wouldn't give up. After living through 4 MS relapses in my (almost) 2 years with the disease I am starting to learn its patterns and signals and sadly, each and every relapse has involved vertigo, brain mud and burning nerve pain in my legs (among other things, too sometimes!) So I went to Shepherd Center Friday morning (thanks Alice for chauffeuring me!!!!) and Dr. Loring agreed it looked and sounded like a bit of a flare-up and suggested hitting getting 3 days of IV steroids infusion going ASAP.

The timing could not be worse (like I said dark comedy. Very dark comedy).

WalkMS was yesterday and our team of over 50 people raised over $12,700 and as their team captain I was supposed to be leading them to victory at the finish line and celebrating alongside them as they have all supported me in my journey with the MonSter.

Instead I "walked" by riding in a wheelchair borrowed from Kennestone hospital (it was red though! Way to go Dad for finding a red chair!!!) I can still walk, no need for alarm, but my doctors strongly advised against walking 3 miles while in the midst of this relapse. I am weak and dizzy and it was not wise to try and push my body past its limits right now. So I rode in style, pushed along by my family and friends in a beautifully decorated red chair, while wearing my red shirt and fabulous red shoes. It was certainly not how I envisioned WalkMS 2009, but after I swallowed my pride about not being able to "walk" in the Walk, it turned out to be a simply beautiful day with my very favorite people in the world.

So I just finished the final day of my IV infusion and am fighting a bit of the steroid blues: irritable, heart racing out of my chest, violent mood swings, and the lovely metallic taste in my mouth. Ah, the joys of Solu-Medrol. haha! Tomorrow the crash will begin and by Wed the light at the end of tunnel will appear. I am still too dizzy to drive (or walk through my house without falling into walls!) but I have lots of friends who have offered their chaffeur services until I feel myself again.

Thanks for all the positive thoughts and a special thank you to the amazing Team Wearing Red Shoes...Top fundraisers for WalkMS Marietta two years running!!!! I love you all so very much!

Tuesday, April 14, 2009

Wearing Red Shoes

This is a picture of me, in October 1985 spraying my very first pair of red shoes so I could dress up as Dorothy that Halloween. Dad's legs are supervising in the background as I do some sort of modified dance move, spraying and glittering my shoes.

It is so amazing to me that so many people have joined the red-shoe-wearing/red-shoe-spraying movement to join for WalkMS 2009. And those that aren't able to join us have donated to support us and it means more to me than I could ever say. (I am still working through my thank you notes and emails! Yours is coming!!)

I think I say it alot, but no one fights a disease like MS alone. It takes a village of support, a network of family and friends to cheer you on with their encouraging words when you feel down, their chaffeuring skills when you can't see, their baked goods as you undergo treatment, their patient ears when you need to talk...most importantly, you need to be surrounded with people who make you laugh, and who love you just as you are...flawed, imperfect and in constant battle with a MonSter who never plays by the rules. I am so lucky, so unbelievably blessed to have so many people in my life who provide so much love and laughter and support for me every single day.

Its not too late to join our party this Saturday, April 18th:

C' know you wanna put on those red shoes!
(I am seriously thinking about trademarking this phrase!! haha)

Friday, April 3, 2009


There are so many cliché phrases about fruit.
“Life is not a bowl full of cherries.” (my Mom’s favorite when I was a kid)
“ Nobody likes a sour grape.”
“An apple a day keeps the doctor away.”
“When life hands you lemons, make lemonade.”

I think the problem is that I much prefer to cherries to lemonade.
In fact, I so destested lemons as a young child that my parents used to hand me lemon wedges and encourage me to eat them just so they could laugh hysterically at the awful, puckered faces I would make (true story!) I then went on to name lemons “yucks” and called them that for years.
“Lemon” is also the word we use for a car that is sort of broken from the start…a dud. Most states have Lemon Laws, in order to protect buyers against unknowingly purchasing a lemon.

Unfortunately, I think I may have gotten a “lemon” body.

At every turn it is failing me. In fact, it actually began failing me at age 6 when I became very sick with Juvenile Rheumatoid Arthritis (now I think they call it Still’s Disease, but same thing). At first no one could figure out what was wrong. They thought leukemia, and a host of other things. I ran high fevers constantly, my lymph nodes and spleen were swollen, as were most of my joints. I was in a lot of pain most days, which is partly why I believe my pain tolerance is higher than most. It feels as though I have spent much of my life managing some sort of physical pain.

So I am stuck behind the wheel of this “lemon” with no way to trade it in! It is completely unfair and some days all I want to do is scream and throw things. Most days I remind myself that others out there are living in “lemon” bodies too, and I am not alone in that. We just have to try and the make the best of what we have, to “keep on keepin’ on” as my Granddaddy says, and to still find ways to live out dreams, even if they are a little soured.

Wednesday, April 1, 2009

Copaxone Caroline

It is about 6 weeks into Copaxone, my new Wonder Drug, designed to slow the progression of MS, minimize relapses and new lesions forming. I suppose only time will tell if it is doing its job. I go back for an MRI in July and I can only hope that between now and then I remain relapse-free and that my brain and spine remain lesion-free!

It is so funny to me how differently each drug can affect you. With Betaseron I got horrible injection site reactions, ran fevers, felt like I had the flu, was achy, got chills, sometimes nausea. But the symptom most warned about with that drug is depression. Apparently with interferon injections you can get Really depressed Really fast and most doctors recommend at least a low-dose anti-depressant preventatively so you never reach that icky low drug-induced depression.

Copaxone is advertised as causing no flu-like symptoms and being less likely to cause depression in patients. Though people warned me the injection site reactions could be far worse (especially since it is every day, and not every other day) So leave it to me to have the opposite reaction that is "normal" or "usual".

What is it Luisa from "The Fantasticks" says...."Please, God, please. Don't let me be normal!"

The first few weeks on the drug the fatigue was awful. I would wake up, my mind was awake, but my body wouldn't do anything I told it do! Wearing a fur coat in a swimming pool filled with molasses kind of fatigue. While that has gotten much better, I have had more headaches over the past 6 weeks than I have had in the past 6 years. The injection sites are getting better as I get the hang of how and where this drug likes to be injected. Annoyingly, every injection burns like a bee sting for about 15-20 minutes. Ice packs seem to help ease the sting a bit, as does distracting myself by talking to a friend for those 20 minutes (thanks, Kimmy!)

But the thing that has bothered me most, that I have found most disconcerting is the appearance of a new unwelcomed persona: Copaxone Caroline. I never know when she will show up and take over my body/mind/soul. She appears for mere minutes, or sometimes stays a few hours. But then she always departs, leaving no trace of her visit behind. One minute, I am watching a fun show on tivo, folding laundry, humming a tune, looking forward to dinner with a friend, then...

BAM! Copaxone Caroline shows up: This tv show is horrible (why do I even watch this show?), the laundry looks awful (I will need to refold everything so it looks better), I hate singing, I hate all music, in fact and there is no way I am up for having dinner with anyone. I don't even want to get dressed. Ever. Again. I will live in pajamas from now on. And not answer my phone, or the door. Why am I even going to college? I am almost 30 years old! That is too old for college...I will never finish. I should quit. I made lunch but now have no appetite to eat anything. Wait. Why am I crying??!?? Nothing happened to make me cry!! This is insane. I give up. It is all just too much. I am running somewhere. I don't know where. But far away.

Then, BAM!
Huh. That was really weird and awful. The laundry is fine, this tv show is funny, I can't wait to see my friend tonight, I am looking forward to class tomorrow, and what was that great song I was humming?

If it sounds like some sort of split personality disorder, me. It feels like it, too!
At first I thought I was really becoming depressed, maybe my body was trying to tell me to deal with some subconcsious issues I had been supporessing. But try as I might, I couldn't figure out anything and these moments kept cropping up. Not every day, but certainly a few times a week. Very scary. Very disconcerting.

In the end (and with the wise opinions of my medical care team) I realized these moments of despair are totally drug-induced. My body is reacting to the massive amounts of medicine I keep injecting into it every day and right now, it isn't too happy about the whole ordeal. With each visit from Copaxone Caroline I just have to say to myself,

"Just ride it out. You are ok. You are fine. This will pass shortly and you will feel normal again"

Or as normal as I ever feel! :-)

Montel Williams was on Oprah recently talking about his MS (thanks Jennifer for the heads up!) He talked a lot about the depression caused by these medications and also the depressiong that the disease itself can cause. He, too, experiences moments of sheer despair, crying out of nowhere and other bizarre emotional responses. And he was able to find the humor in it, as so many of the MS community does every single day.

So, a warning to my loved ones out there: I sincerely hope you do not receive a visit from Copaxone Caroline, but should she appear, bawling for no reason, seeming apathetic or irritable, just know that her visits never last long (thank God!) and when I return to take my rightful place in this body, I will then spend the next 10 minutes making jokes at my expense and poking fun at how ridiculolus Copaxone Caroline is. And my dear friends who know me best, will laugh right along with me, perhaps poking fun at her as well. Because they will know, as I now fully appreciate, that I am NOT nor never will be someone who gives up. I am more of a fight-to-the-death kinda girl. Kicking butt, taking names, and laughing alot along the way.

Tuesday, March 31, 2009

But your labs look great!

A very quick update from the world of Caroline's bloodwork:

I had my appt with the rheumatologist to get the results of the 8 vials I recently gave them and according to my doctor, my "labs look great".

In doctor-speak, this means "Obviously there is something wrong with you because your eyes stopped producing tears, but your labwork says you are 100% fine, so we don't know why your eyes just gave up".

So while I currently cannot be given a clinical diagnosis of Sjogren's Syndrome or some other autoimmune disease, according to my doctor it is a watch-and-wait thing now. She says there is a distinct possibility that it will turn out I do have Sjogren's or even Lupus, but as of today neither can be confirmed. Follow up labs in 6 months.

In the meantime I am trying these new things called Lacriserts which look like little grains of rice, that you insert carefully below each eyeball and then they release gel-like substance up onto your eyeball throughout the day. It sure beats having to put eyedrops in every 20 minutes, but they are not easy to put in (they are TINY and if you drop them on the floor you can forget finding them again, plus they are no longer sterile! and the double vision makes putting mascara on hard enough, much less putting tiny rice things into my eyes!!) and they only last 6-8 hours so I usually need 2 sets.

I am trying to be patient but some days I just want to rip my eyes out of my head they hurt so badly from the dryness. Usually I reach the point at night where it hurts too much to keep them open and Chris and I "watch" TV together and he tells me the funny visual things I am missing while I listen.

The good news is that it is the end of March...and my last MS relapse was in mid-late November, which means I have gone 4 months without a relapse! Which after 2008 is a new record! haha
I just know the Copaxone is going to be the right choice for me. Feeling hopeful that it is working makes having to do injections every day a little easier :-) Though I did tell my doctor I was giving myself my birthday off from injections: my present to myself! Everyone needs at least one "mental health" day a year.

This saturday was our second annual Shoe Spraying Party for Team Wearing Red Shoes. I am so excited. We have a really big team this year and I know it is going to be a great walk with so many of my favorite people there and wearing their red shoes! It is not too late to join us:

Cmon, you know you wanna put on those red shoes ;-)

Saturday, March 7, 2009

Awareness Fact #7

On this final day of MS Awareness Week I leave with you this...
There are currently several FDA approved treatments for slowing the progression of MS and the National MS Society recommends treatment with one of these disease modifying drugs as soon as possible after being diagnosed in order to help maintain a FABulous quality of life for as long as possible!

I am so blessed to have a wonderful team of doctors and nurses that help me navigate my treatment options in order to manage my MS and help me to do the things I want to do.

Though there is no cure...yet...I have hope that one day we will know a world free of MS. And on that day I will invite you all to a Wearing Red Shoes Dance of Joy event, in which we will...well, wear our red shoes, and dance for joy that the MonSter has been eliminated forever!!!

Friday, March 6, 2009

Awareness Fact #6

Multiple sclerosis causes a wide range of symptoms. That being said, some of the more common ones are extreme/abnormal fatigue, numbness/tingling, balance/coordination problems, muscle weakness, nerve pain, spasticity, tremors, blurred/double vision and vertigo.

Heat, infection and stress can worsen symptoms and/or trigger relapses.
So I try and stay cool and avoid illness as much as anyone can...still working on that last one. If anyone out there has a cure for stress, I am all ears!!! :-)

Thursday, March 5, 2009

Awareness Fact #5

The way MS does its damge is by attacking myelin.
Myelin is the insulation that surrounds nerve fibers in the brain and spinal cord.

Think of myelin like the insulation around an electrical wire...and MS just bites into it at various places, causing the electrical/nerve signals to get all messed up.

This is also why people with MS are so sensitive to heat. If the body's electrical system gets too hot, it short circuits causing wacky things to happen! Luckily, once the core body temperature returns to normal, usually the system "reboots" and you are back to normal. :-)

Wednesday, March 4, 2009

Awareness Fact #4

Important numbers:
Over 400,000 American have MS.
Over 2.5 million people worldwide have MS.
The majority of people are diagnosed between ages 20-50, though the diagnosis age range is actually 2-75!

Tuesday, March 3, 2009

More events to come!

Just a quick reminder
Tomorrow night, 6-9pm
"Shop for the Cure"
at Cherry Pie:

Also, I just got word of a wonderful event being hosted by my new friends Zach & Melissa Polun at the Sweetwater Brewing Company
Saturday, March 28th, 1-4pm.
For details:

What creative fundraising ideas people come up with!
Beer tasting for MS? Sounds good to me!

Awareness Fact #3

The progression, severity and symptoms of multiple sclerosis are unpredictable and vary from person to person. Sometimes symptoms will appear, then disappear completely. Other times they come and go more regularly. Chris and I have learned an important lesson from this: Always get travel insurance when planning fabulous vacations!! :-)

Monday, March 2, 2009

Awareness Fact #2

Multiple sclerosis is not contagious and it is not fatal.

(This means you can hug and kiss on me as often as you like!)

Sunday, March 1, 2009

MS Awareness Week!

Today marks the beginning of MS Awareness Week.
I am fighting a nasty cold but nevertheless will try my best to post wacky facts about MS every day this week.
Other exciting events happening this week:

"Shop for the Cure"
Wednesday, March 4th
Cherry Pie Boutique
Come shop with us at my favorite store in Vinings and 20% of the evenings proceeds will go to the NMSS in honor of MS Awareness Week!

Yoga in the Park
Saturday, March 7th
Piedmont Park
Yoga for all levels in beautiful Piedmont Park (hopefully with less snow by then!)

If you have an orange MS bracelet, wear it all week long, so if people ask what it's for you can tell them about MS, about your fabulous friend Caroline and invite them join/donate to WalkMS 2009! If you don't have one, let me know and I will make sure you get one!

Fact #1: Multiple sclerosis is believed to be an autoimmune diease, though this has yet to be 100% proven by science. Like most autoimmune diseases, MS affects twice as many women as it does men! We women get all the fun... :-)

Thursday, February 26, 2009


This past Sunday was "Oscar Night". If you missed it, it was actually a pretty good show this year. Hugh Jackman was an incredible host - he is a true triple threat and was singing and dancing and making jokes. Plus he is just darn cute. But I digress...

Every year when the Oscar's come on I get a little nostalgic. When I was growing up my Mom and Dad would host an Oscar Night party every year. While the "grown-ups" ate dinner and watched the show in the den, my brother Van and I would watch from up in the playroom. There was always a ton of yummy food, people cheering and booing over who won and who lost, and Van and I were allowed to stay up way past our bedtime!

As you can probably guess, movies were a big part of my life growing up. We loved watching movies, in the theaters, at home. I can remember seeing the first Batman movie (circa 1989) with Mom, Dad & Van on the weekend that it opened, while we were down at the beach. My Dad often took me on "Daddy-Daughter Dates" and we would have lunch and see a movie together. A couple of weeks ago we even had a mini-date of Chick-fil-a and "Journey to the Center of the Earth" on his new blu-ray player and in 3D! (Btw, if you have double vision, you must place 3D glasses over your prism glasses in order for 3D to work properly! haha)

Okay, Caroline. I get it. You like movies.
But that's not the real point here. Keep reading...

It's about escapism. Getting away from it all.
Turning your mind off for a little while.
Maybe your thing isn't movies. Maybe it's Rock Band or the Wii, or tennis or golf. Maybe it's scrapbooking or chasing your kids around in the yard.
It's about playing.

The National MS Society puts out a wonderful magazine called "Momentum". The latest issue just arrived last week and this excerpt caught my eye:
"We defined play as something that could make us feel happy, joyful or cheerful. Some members said that play made them feel more alive; others said it helped them take pleasure in small things. I forget that I have MS when I play." -Nancy Chamberlayne

But this isn't just about MSers! We all need to play more. Because Nancy is right- playing makes you forget about the things that are stressing you out the most. It gives you a mental health break, gives your mind a mini-vacation from all those things that keep you up at night.

In the recent past I have found myself using a phrase that came out of nowhere. I think it originally started with babies: Being able to give Paul & Karen's new baby Courtney her bath "filled my soul with joy". Going to visit Jennifer, Vince, Lola & Lucy "fills my soul with joy". I love playing with babies. I also really enjoy sitting in my office (aka Craft Room) and making homemade cards for people's birthdays. I still love going to the movies. I like to color with crayons. I find baking very relaxing. I love to dance, even though it is harder to do nowadays. I love watching my Pace and HSPS kids perform. I enjoy being a college student again and learning new things. The list goes on...

The older we get the more important it is to make time to play.
I am lucky to have so many things and people that fill my soul with joy and even have the power to make me forget I have MS for a little while. :-)

Sunday, February 8, 2009

I'm. So. Tired.

Fatigue is one those symptoms that is completely intangible. You can't always recognize it, but MSers always feel it. Of course everyone experiences fatigue. No one is immune to it and as we age we all fatigue more easily (one of the many joys of getting older!)

MS fatigue is hard to explain and like nothing I have ever known. I am slowly starting to learn my own signals and symptoms of it, though I am told that it can differ greatly from MSer to MSer. Have you ever had the nightmare where you are trying to run and simply can't? Or you can run but only in a weird slow motion-molasses type of run? MS fatigue is kinda like that - Dr. Thrower describes it as "trying to walk through a swimming pool while wearing a fur coat"!! ha!

You want to walk at a normal pace, and yet your legs will just not cooperate. You will them to move and its as if the signal just takes longer to get to them and finally they cooperate, but only in Molasses-Mode. Other things stop cooperating too. Your feet don't pick up off the ground as easily (the clinical name is "Foot-Drop"), your hands become weak and you find yourself dropping things more often, even having trouble grasping things like pens and your toothbrush. I always know I am drastically out of "spoons" when can't hold my housekey well enough to maneuver it into the front door lock and it takes me more than 3 tries to get the stupid key in and then turn it! I have learned to laugh at myself when this happens and then I head straight into the house and straight into my pajamas for bed!

MS fatigue doesn't play by the rules. Sometimes a night's sleep returns you back to "normal". Sometimes you wake up after a perfect night's sleep and feel like your body has been pumped full of lead. This morning was one of those mornings. My sweet husband finally convinced me to take some provigil and that seemed to help a little. We think that my body is just adjusting to the new medication and its hard work getting used to it.

Oh! I started Copaxone last Tuesday. I have high hopes that it will work for me, though getting my body used to a new drug is a slow, painful process. Hopefully 7-10 days I will be as good as new. It is still a sub-cutaneous injection (aka little needle) but I have to do it every day. Also its crucial to rotate injection sites and I have to have 7 sites that I use. So I assigned each site a different day of the week: right on Wed, left leg on Mon, etc. I even made up a mini-dance routine so that I would remember which day goes with which body part! hahaha!
Maybe if I get inspired I will put my Copaxone dance on youtube!!

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.