Sunday, May 31, 2009

The best laid plans...

I had intended to post a riveting summary of my action-packed day, which consisted of not one, not two, but THREE soccer games in gorgous, sunny, 80-degree weather.

However, after 230 minutes of soccer in the sun, my brain is like an ooey gooey glob of cooked oatmeal--and let me tell you, oatmeal-head significantly dulls a girl's writing skills.

But here's the gist of what I wanted to say--while my vision was truly suck-a-riffic for each of the three games, I feel tremendously lucky for the fact that my craptastic vision is my only symptom to date.

I'll try to expand on this topic a bit in the next day or two, when I'm forming cohesive sentences again.

Until then, I think I can actually hear my bed calling me... so good night.

Thursday, May 28, 2009

Because I'm a Jerk...

Yes, from time to time I find ways to thoroughly entertain myself at the expense of my dogs. But whatevs... my house, my prerogative. Note: slippery dog boots + snowpacked yard = fun times for me.

video

**While Minnesota is cold, I should note that this video is from the winter archives, circa December 2008. It is actually quite warm here in May.**

Wednesday, May 27, 2009

51 More Minutes of World MS Day--Did You Know?

I just got home from a fantastic soccer game, and started flipping through some of the blogs I follow... lo and behold, it's World MS Day. To commemorate this day, MSIF and the Hertie Foundation created the following film illustrating just how varied and nondescript the physical progression of this disease (and the people it affects) can be.



A few notes from the creators of this video:

Multiple sclerosis (MS) is one of the most common diseases of the central nervous system. Today more than 2,000,000 people around the world have MS.

MS is the result of damage to myelin - a protective sheath surrounding nerve fibres of the central nervous system. When myelin is damaged, this interferes with messages between the brain and other parts of the body.

Symptoms vary widely and include blurred vision, weak limbs, unsteadiness, pain and fatigue. For some people, MS is characterised by periods of relapse and remission while for others it has a progressive pattern. For everyone, it makes life unpredictable.

This film is a joint project of the Multiple Sclerosis International Federation (MSIF) and the Hertie Foundation launched on the first ever World Multiple Sclerosis (MS) Day, 27 May 2009. It aims to capture the attention of people worldwide, motivate them to learn more about MS and become involved in the global MS movement. Show your support today! Register at www.worldmsday.org

The Multiple Sclerosis International Federation (MSIF) is the umbrella organisation of national MS societies. MSIF leads the global MS movement by stimulating research into the understanding and treatment of MS and by improving the quality of life of people affected by MS. www.msif.org

The Hertie Foundation is one of the largest private foundations in Germany. For more than 30 years the Foundation has been actively engaged in MS research and in supporting people with MS. www.ghst.de

Tuesday, May 26, 2009

The Scheduled Shot, Which At Once Was Not

Ha. I bet you were expecting a tidy little package of info about how I'm surviving my first day of hamster ovary injections. Well guess what--I'm not!

As I have mentioned before, DSO is the man. At my appointment last week, we sat down and took a much more exhaustive look at the treatment options that are available to me. And while DSO explained that Rebif is a really good option when evaluating the three interferon choices (Rebif, Avonex, and Betaseron), there is another option that Dr. MS did not discuss with me at the time of my initial diagnosis.

Enter: Copaxone. Sweet, sweet Copaxone.

Allow me to back up for a minute and give you some background information. Another important conversation DSO and I had was about the stage of MS I was diagnosed with. He reviewed my test results, bumped them up against the MRI I had in 2005, and agreed with Dr. MS's assessment that I have MS.

From there DSO took it a step further and clarified that he believed I have been graced with a mild case of the disease. Ultimately, my symptoms have been visual, and (for the most part) are limited to situations involving intense heat, activity, and/or stress. He clarified that with the progress of my symptoms to date (much more of an inconvenience than a "disability" at this point, with at least 5 years of lesions on record), the side-effects I had a good chance of having with Rebif would likely slow me down more than the disease itself.

Copaxone, on the other hand, does not have the same side effects that are associated with the interferons (which, he explained, are similar to the cells introduced into the body the day before getting the flu--causing fatigue, muscle aches, fever, and general malaise). So while my new treatment plan consists of daily injections (instead of 3x/week), the side effects are much less severe--AND the results in clinical trials are right in line with those from interferons. Oh--and the daily injections? Frankly, I think the routine will be much easier to remember than 3x/week.

So color me happy, I have a new plan--one that is pretty gosh darn palatable if I do say so myself.

P.S. The change in treatment plans has ultimately pushed back my meeting with the Needle Advisor to July 7. Until then... you'll have to muddle your way through a hodgepodge of posts about other random topics.

Thursday, May 21, 2009

Weight Lifting

Today, as you know, was my appointment with DSO (Dr. Second Opinion).

Let me backtrack a little by saying that throughout the process of being diagnosed, I have felt like I have had a lot to learn, and little to give by way of knowledge or advice. Today, I am confident that I have an insightful and extremely valuable nugget of wisdom to share with anyone who is going down this road. If you are questioning your plight, or are not comfortable with the information you are receiving (or how you are receiving it):

Get! A! Second! Opinion!

It has been a crazy hectic week, and I'm prepping for a crazy hectic weekend, so I can't elaborate much now. But here's a quick and dirty summary of today's fabulousity:
  • I still have MS.
  • My treatment plan and prescription have totally changed.
  • Turns out my vision problems ARE in fact MS-related. Who woulda thunk.
  • I have a MUCH better understanding of how this disease is affecting me.
  • A huge weight (confusion, uncertainty, etc.) has been lifted off my shoulders.
  • Validation (parking and otherwise).
DSO is the man. Really. Truly. Unequivocally.



I'll share all of the tasty details when I'm back to the world of innernet connectivity next week. Until then, dear readers, I bid you adieu.

Monday, May 18, 2009

I'm Just Sayin'...

Maybe it's just the perspective I have today (checkbook in hand, knot in stomach), but I think the bills are actually kicking my a$$ harder than the diagnosis did. WTF?

Photographic Debrief--My Weekend at the Farm

My parents are now (as of Friday!) the official owners of our family farm--a beautiful farm in Iowa that has been passed from my Grandparents (Grandpa was born there) to my Uncle Mark and his family, and finally to my parents. I couldn't think of a better occasion to further "break in" my new camera. Following are a few of my favorite shots of spring on the farm...





















Friday, May 15, 2009

Let's Make a Deal!

When I stacked the two white FedEx boxes (that's right--two!) next to each other on my dining room table, it totally brought me back to that game show--Let's Make a Deal--with Monty Hall.












So without further ado, a description of the contents of boxes one and two.




Box Number One--Club Membership Materials








As I referenced in earlier posts, this is the box that contains my "welcome" packet to MS (or, more accurately, to the treatment I'm slotted to begin next week). This welcome packet contains:

  • A welcome brochure with information about the treatment and MS LifeLines (the support network operated by Rebif manufacturers Pfizer and Serono)
  • A friends and family brochure to help educate my people about what's what
  • A Treatment Journal to record information about weekly injections, side effects, and questions
  • Injection training materials, which includes a DVD with instructions on how to shoot up (er, inject--sorry) and an "injection preparation mat." Weird.


The box also contained my "Rebiject II"





With a name like Rebiject II, you know it has to be cool. Evidently, you can assemble this contraption to fashion a mechanism that will do all of the dirty work of giving myself an injection with the single push of a button. Sweet. I'm sure I'll have much more to say on this topic after I test the stuff out in roughly 9 days. In the meantime, I encourage you to think about how much fun it is to say "Rebiject" or other associated words ("Rebijected," "Rebijection," or "RebiReject;" now go ahead and make up your own definitions--see how much fun???)

And finally, the box contained my welcome kit (not pictured, because really it was just an ice pack and a foil bag with a needle disposal thingy). There's a good chance I'll be employing that puppy not once but twice in the first week following my Needle Advisory session. Go big or go home, that's what I say.

Box Number Two--The Lovely Liquids

My Rebif titration pack arrived as scheduled last Wednesday.





After I meet with DSO (Dr. Second Opinion), I will embark on my treatment journey. The treatment entails three subcutaneous injections per week. From what I have read thus far, the possible side effects associated with this treatment include:
  • Flu-like symptoms, including headaches, fever, malaise, and muscle aches
  • Fatigue
  • Liver problems
  • Injection-site reactions
  • Depression and suicide

Because of the possible side effects, they recommend administering the injections shortly before going to bed, so the medicated folk can "sleep off" the flu-like symptoms, if they occur. I'm thinking my plan will be to give myself the injections on Tuesday, Thursday, and Sunday nights--so I can (hopefully) have game days and weekends relatively side-effect-free!

My meeting with DSO is still on the calendar for Thursday--I'm anxious to see if he's ready to "make a deal," perhaps in the form of something behind a curtain? Or are the two boxes it for now? Oh, the anticipation... Surely I'll post.

Thursday, May 14, 2009

Holy Crap, They're Everywhere

For those readers who do not already know, I am the proud (?) owner of two dogs--Randy, my Jack Russell Terrorist Terrier, and Darby, my rescued mixed-breed.











While Darby is one of the sweetest (albeit insane) dogs you will ever meet, I'm convinced that Randy is punishment for the sins of my past.

So when I saw the headline Jack Russell Terrier Does What Neither Rain, Sleet or Snow Could Do: Mail Halted in W.Va. Homes in the news today, I was torn between breathing a huge sigh of relief (there are others who understand!), and resigning myself to the fact that this story could easily have been written about my dog.

*Sigh*


Monday, May 11, 2009

Pet Store Surrogate

Finally—the posting about treatment that I have been promising! Timely, because my first month’s supply of is scheduled to be delivered on Wednesday. Then, pending confirmation from DSO (Dr. Second Opinion), I am scheduled to meet with my Needle Advisor to officially kick off treatment with Rebif on May 26. But first things first…

What is Rebif?
Rebif is an injectable prescription medication classified as an Interferon (Interferon beta-1a, to be precise). It is a “biologic” or “biopharmaceutical” medication, which means that it is derived from a biotechnological process from one of the naturally occurring interferons (types of proteins). The proteins in Rebif are genetically engineered in Chinese hamster ovaries, and are synthetic versions (comprised of the same amino acids) of interferon proteins that naturally occur in human beings. Note: While I think I got all the facts right, medical professionals should refrain from basing treatment decisions on the preceding paragraph.

Um, Okay… So How does It Work?
As I was researching information about Rebif, I noticed that there were not a lot of sites containing information about how the treatment actually works in the body. So I pulled the following (word for word) from the MSLifelines site (hosted by Rebif’s manufacturers, Pfizer and Serono):

The precise way Rebif works is not known. Interferons, like Rebif, have many actions that affect the immune system. Some of these properties are thought to maintain and preserve nerve function. In this way, Rebif may help reduce the damage to the vital components of the central nervous system. Although there is no cure for MS, Rebif has been proven to slow the course of the disease.

And Now For the Most Important Question
You are now probably wondering if, by injecting myself with dozens of tiny synthetic proteins manufactured inside Chinese hamster ovaries, I run the risk of somehow coming across fertilized hamster eggs, and will soon be carrying dozens of surrogate Chinese hamster babies. From the research I have done so far, the answer to this question is no. I will keep you posted if that changes.



What About the Dang White FedEx Box You Keep Talking About?
What about it? It’s still safe and sound in the guest bedroom... Hmm, do I sense another post on the horizon? Perhaps…

Thursday, May 7, 2009

OMG (Oh My Garden)!

I love surprises. Which is why my approach to gardening, although strange to some, suits me to a tee. You see, last fall I purchased several packages of bulbs to supplement the garden of flowers I acquired from the family farm. I remember being really excited about the pictures on the bulb packages--bright colors, tulips, crocuses, and tons of other stuff that I didn't know how to pronounce.

I took special care to spread the plants strategically in areas throughout the yard that were devoid of cheerful floral goodness. I truly believed I would wake up from winter hibernation, yawn, stretch, and rub my eyes--and voila, a magical field of flowers blowing in the breeze--right in my own back yard!

Fast forward to today. While not yet a magical field of color, I do have a plethora of green buds springing up all over the place. Unfortunately, I did not map out what I planted where. In fact, I did not even go so far as to note the names of the plants. And I'm pretty sure I threw out a good portion of the packages that the bulbs came in.

So behold--my magical field of mystery.



I think this one is going to be some big round purple thingy with a bunch of little blooms on it, like a floral disco ball.



And this one is obviously some swan-like, graceful deep purple lantern-like inverted tulip thingy.



And finally we have the waterslide for raindrops.

I cannot wait until these mysterious foliages flourish in their full glory so I can try to figure out what the heck they are. In the meantime, they are doing a fine job of supplementing some of my old favorites.



Oh, yeah. I still haven't tackled that big ol' FedEx box of MS stuff, now tucked safely away in the guest bedroom. But I swear, when I do... a fabulous post will follow.

Tuesday, May 5, 2009

Chinese Hamster Ovaries, Rebijection, and Avoidance

Curious about the headline? Me too. But apparently I'm not curious enough to break into the elephant (in the form of a large white FedEx box) in the room that contains my MS Club Membership Materials (compliments of Pfizer).

When I know more, so will you... until then--goodnight.

Friday, May 1, 2009

Just because...

In the midst of what has been a very busy week, it occurred to me that I been delinquint in posting on my fledgling blog (for shame!).

I know you, dear readers, are terribly distraught by the fact that you have not been graced with my wit and wisdom over the past few days, and for that I apologize. As a gesture of good will, I am including this delightful video (thanks for sharing, Kindall!) to bring happiness and sunshine back into your day. It is a song called Her Morning Elegance by Oren Lavie, and I dream of someday having the tools, talent, and inspiration to create something like this.



And if that isn't enough, I'm also promising even more fun and fabulous posts this weekend. See you then!