Tuesday, June 29, 2010

Going Rogue With MS...

In the words of the now famous (or infamous, depending on your political slant), "I've gone rogue". Personally, I think the Cheese looks fabulous super-imposed on the Palin cover (enjoying it now before the Republican lawyers contact me regarding "infringements"...hehe). But, anywhooo...

But for the grace of God go I...perhaps that would be a better title for this post. Yes, it HAS been over 6 months since I visited this blog (or YOURS, for that matter), and I wish I had tales of world travel or some other exciting news to share as reason for my absence, but I don't. Frankly, it's a rather complicated explanation, which I will try to simplify now: I'VE GONE ROGUE WITH MULTIPLE SCLEROSIS.

OK, maybe that DOESN'T exactly simplify my explanation so, let me break it down for you briefly here. I was diagnosed with MS in 2003...I spent nearly 6 of the last 7 years trying every treatment approved by the FDA for slowing the progression of MS (and one or two NON-approved ones here and there)...and the MS only seemed to worsen OR I felt so incredibly ill from the medications, I had moments of WISHING the dayumed disease would just kill me. In December 2008, I made the decision to stop all "approved" clinical treatments, believing in my heart of hearts I would much rather have a year or two of NOT feeling ill from medicines and accept potential disability than 5 or 10 years of feeling like hammered sh!+ and STILL potentially become disabled. Alas, there are no guarantees with MS...

In the summer of 2009, amongst detoxing from nearly 6 years of chemicals in my body, I began a "new" approach to living with my version of MS. Perhaps some might simply label it as DENIAL, but I labeled it as a RENEWAL. I ceased worrying or focusing on what the disease "might" do to me and began living WITH it. I started a new exercise plan, a new intake plan, and a new *mental health* plan...and, strangely enough, this approach began working for me. I lost nearly 40 pounds (although winter assisted with packing a few pounds of that back on my less than svelte frame!), began having less fatigue and more energy, and basically (from friend's daring reports) was a more PLEASANT person to be around (imagine that?!?). MS became a thought/problem on the back burner of my sometimes misfiring brain and I refused to acknowledge each and every ache/pain as a "sign" of impending misfortune. I went ROGUE with my MS...

This approach has worked well for me...most days now, I barely give thought to the disease. I feel better than I have in at least 7 years and I have packed an incredible amount of activity into my life over the past 6 months. I think in ceasing posts on this blog, I was also able to put "out of sight, out of mind" the problems associated with my MS. I simply didn't want to talk about it, read about, or dwell upon it. And today, I really DO feel fortunate and think, "but for the grace of God go I". I am content, peaceful, and finally LIVING again.

My *renewal* has certainly not left me disease-free...MS is still present in my life, but to a much lesser degree than when I previously focused on it daily in this blog or via reading other wonderful MS blogger posts. And I still DO have those mornings (which sometimes turn into days or a series of days) where MS reminds me it is still lurking in my brain...a simple fall to the floor or dizzy spell, or weakness, or pain, or "brain fart", or tightness in my legs/chest, reminds me I am mortal and I carry the disease called Multiple Sclerosis inside me. That's life...unpredictable and ever-changing. And it is MY life...which I choose to live however I want to.

It has been over 18 months since I last sat hooked to an infusion pump, either receiving Tysabri or steroids...I've enjoyed that freedom. I do NOT necessarily recommend *Going Rogue* to anyone else with MS...I am only telling you what has worked for me. This was a long thought out choice I made that ("but for the grace of God go I") has WORKED for ME. We are all different in our disease process and each make our own choices how to manage that AND what consequences we are willing to live with in our choices. I AM living with mine...

OK, that went a little beyond BRIEF explanation! Now on to what the Cheese HAS been doing with her life since my last post...I'll also try to make this *brief* because basically, I'm only adding it for filler. LOL

January brought the ending of the journey for a dear colleague and friend...I was depressed. I still miss him. Another coworker and I put together a beautiful video tribute of his life for his memorial service in February.

February came with a trip to the Midwest to visit the sister of Cheese...family...what can I say? Perhaps that is sufficient. I DID get to hear my young aspiring musician/singer niece perform while there, which brought tears to my eyes...she did NOT inherit that talent from me! February also brought a trip to Urgent Care and a scare with the medical profession due to a serious upper respiratory infection. I managed to skirt disaster with several oral medications and once again cheated the Grim Reaper out of another soul! I also attended the first of three colleague retirement parties (we are leaving/dropping like flies at my "govment" job!).

March, from what I can recall, was a fairly quiet month. Whew...another retirement party, a long, drawn out winter, and more rain.

April promised Spring and she lied...although, June promised Summer and she's a lying whore, too, but I digress. Another sinus infection plagued me and I discovered the use of the *neti pot*...gross little thing, but seemed to ward off yet ANOTHER round of medications.

In May, my colleagues and people I THOUGHT were my friends, decided to vote me OFF the island and into a Union Stewardship position at my job...I'm still considering writing each and every one of them out of my will for this, but have stopped short of homicidal intentions. :-) This is not a job I take lightly nor is the learning curve an easy slope. Just call me Norma Rae...

June (we're still IN this month, aren't we?!?) as I mentioned, was supposed to bring the beginning of Summer...we are still waiting on that here in Seattle. I hate weather forecasters...they offer false hopes. I have walked in more cloudy, rainy days on wet streets than I care to mention (other than to subtly say I have continued my treks across town in an effort to drop my winter pudge!). More Union meetings, another huge retirement extravaganza for one of my *X* friends (he WAS one of the Union Shop Stewards I have so ineptly replaced...bastid for retiring after 30 years!), a viewing of the highly acclaimed Cirque Du Soleil performance - KOOZA, a tense contractor/neighbor issue of replacing a falling down fence line, and...STILL no summer to speak of. I also had the wonderful opportunity of meeting IN PERSON, bloggers, Jen and Lisa, from the east coast! Hoo Yah!!! I greeted them at the hotel with a sign bearing my profile picture so they might recognize me:

Had a magnificent time touring some quick sites of Seattle and hearing what I considered *exotic Jersey accents*!!!

Here's hoping July brings some sunshine short of a heat wave...I still have no tolerance for heat (and NO, Joyce...STILL no air conditioning unit!). July promises gardening (if the sun ever shines for more than a few hours), more Union activities (we are in process of preparing for contract negotiations in the shadow of a huge county and state budget deficit...of course, I inherit THIS mess!), another celebration of the birth of the Cheese (should I make it to the end of the month!), grilling, planning a trip to the coast for a few days, and more action-packed *fun* at my job. Throw in several more treks around the "hood" to complete another hundred mile walking summer, and I'd say my schedule is full in the upcoming month.

I have not yet decided if I am returning to this blog to write about MS...after all, I seem to have SO little to say about the disease from my own perspective AND there are sooooo many other wonderful MS bloggers out there spending considerable time researching, talking, sharing, and discussing Multiple Sclerosis...I pale in comparison because, as you already know, such LITTLE thought goes into anything I write here! We'll see...

Here's wishing y'all a pleasant summer! And now, I'm continuing to skip down my *rogue* path...


Anonymous said...

Hi there! Nice to see you have come up for air. After reading about your last 6 months, I'm tired!

Ah, you got sucked into union steward....so did I for the last 3 years that I worked. I'm retired now on disability and don't miss that headache or stress anymore.

I wish you well as always. I agree that posting on the blog keeps our dx in the forefront and it is nice to forget we have MS for awhile. I once forgot for almost 10 years! Kids did that to me - you gotta run to their sports and activities, so you just keep on trucking.

I found the more I surrounded myself with "normal" people, the better I felt and the less I was reminded of "what was wrong" with me.

So take care of yourself and hopefully by Christmas you will have another good news blog for us.


Judy said...

Missed your rogue ways. Glad for the update. Will understand if you go AWOL again but would welcome your staying for a spell.
Your fellow Rx rogue,

Webster said...

It's nice to read you again, and I am sorry that I couldn't join Lisa and Jen to meet you. Another commitment took priority.

You sound great and are taking amazing care of yourself. You don't have to blog about MS just because you HAVE MS you know. You could, maybe, blog about the price of tea in China, for instance.

Just because I can't walk 100 miles this Summer (or this millennium, for that matter - lol) doesn't mean I wouldn't enjoy reading about your daily or weekly adventures. Just sayin'.

Have Myelin? said...

WOW! The cheese popped up! =)

I'm happy to hear ANYTHING from you. Who cares about MS???

And you look great on that book cover! LOL!

Steve said...

Wow. Great to hear from you. I'm really glad you're doing so well.

Now, if we could just get a little friggin sun around here! ;)

Anonymous said...

Absolutely LOVE that picture! I am so glad that going rogue is working so well for you. I was saying to my husband the other day that I feel like I need to detox from all this medication. Most of the time I feel like I am sleep walking through life. I hate that feeling!
Don't disappear just because you don't want to write about MS. It's your blog, write about what you want. From the comments I read it sounds like you'd be an inspiration to many out there. I hope to see more of you!

imascatterbrain said...

Don't worry about those "Republican lawyers," the Criminal Cheese Consortium is a complex agent of the multinational war economy, who would go God knows how far.

I must read your post later, my thoughts are wa-a-a-ay to jumbled right now.

PS, am so in love with you MRI GIF.

Sammy said...

So glad yer doing well... but I, erm... I thought I read "Going ROUGE". Hehe... TOTALLY different!!

Anonymous said...

So glad to read you're doing well.
Stay inspired!
Brain Angles - Invisible Ink

Sara said...

Wow, I left the UK on January 21st and returned the the USA in June and suddenly realise I've missed you tons, only to find out you're on a blogging holiday . . . oh no where will I get my cheesewiz fix?? Hope all is well with ya, xxoo

mouse said...

Well I'm probably a day late and a dollar short as it may be next year before you read this. I am happy that you are doing well with out the help of the drug czars, this is where the FBI/CIA step in to take a peep, and their infinite number of ways of experimenting with us MSers. Keep your intuition on high beam and your spirit will get you through this. Enjoy you journey!

Kim@stuffcould.... said...

Wow, going rogue is fine! We all need breaks from everything in life. Hope you do fine.

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Herrad said...

Hi Braincheese,
Great post, I hope you are enjoying life without meds.
Excellent decision to stop.
I just passed by to say hello.
I hope you are doing well.

swamprose said...

Hi Braincheese. I feel lucky that I found you now that you are Rogue. I am just beginning my journey with MS, so stopping here was part of my daily online research. MS is the pits, but you are so right--it's just another detail of who I am, not the point. I just joined the neighbourhood pool and am swimming like a fiend and feeling so much better. My summer plans were put on hold by this, and sitting around waiting for the next MRI has been the big action--but you are so right--that's not life, and MS is not going to get me down, or cancel all the things I was going to do. I am going Rogue for sure. Thank you so much for the inspiration. It comes at a great moment.

Aussie Michelle said...

Hi, congrats on putting your brain out of your mind. I went rogue fifteen years ago (right from the start) and the brain thing has hardly bothered with me. I don't even tell (most) people of the diagnosis.

I'm not sure if my attitude has kept it at bay or if the fact that my brain is not messing with me much is responsible for my ignoring it. Either way, it works for me.

I made a conscious decision to lead a healthier lifestyle after the Dx. I am vegetarian and into nutrition. I also had all my amalgam fillings removed. Other than that, I just pretend I'm normal.

I stumbled upon one of your old posts when I was searching for possible links between thryoid and MS, and found it very interesting, but I'm not going to read many others because I don't want to focus on the disease either. I'd love to read more by you in your new frame of mind.... and not focused on MS. Your writing is extremely entertaining.