BBHwithMS

"Inappropriate Momma, Recently Diagnosed REDNECK, MS Survivor, Keeper of Spanky

Hey all…back from my “winter break with the kids/parents visiting from out of town visit” hiatus.  I have good news and bad news.  The BAD NEWS is that I had a pretty bad fall.  Knees and palms were pretty shredded up, I may have a fucked up wrist -it hurts like hell to “move it like this” to which my kids promptly said, “well then DON’T move it like that!  They are SO helpful:)  Since my landing point was my check/side of face, I managed to get me a big ole bruise on my face.

 

The GOOD NEWS is that this fall had absolutely NOTHING to do with the MS.  I was out for a long walk with Spanky (our dog) and was actually aware of and appreciating how good a day it was (MS shit wise.).  We were still a good ways from home when dark storm clouds quickly rolled in and we were hit with one BIG ASS rainstorm.  I honestly don’t know if I have ever experienced going from not raining at all to torrential downpour that has you SOAKED within a minute.

Spanky has many unique and wonderful qualities but being a “water weenie” is NOT one of them.  A true bonified baby when it comes to getting wet.  One look out the front door; if he even sees that the pavement is wet he turns around and trys to go back inside. Not surprising then to hear that he was NOT a fan of this storm and the fact that we were both drenched to the bone in a hot minute.  He wanted to go home.  So I picked up my pace (with a quick nod to the fact that I was ABLE to do so) and continued on our way.  We probably would have made it, soaking wet, but safe and sound, if it hadn’t been the additional two little things Mother Nature decided to throw our way.  First, there was the hail.  To be more specific BIG ASS HAIL  that hurt like hell when they were pelting us.  And again…who knows….MAYBE my pour little “water weenie” and I would have made it home soaking wet and a bit sore from the BIG ASS frozen balls hitting us…but we will NEVER know.  Because that is when that BITCH (aka Mother Nature) decided to throw her final twist into the mix – the LOUDEST clap of thunder I think I have ever heard.  Although not normally phased by thunder or fireworks (or gunfire for that matter) that was the last straw for poor Spanky.  Sensory overload and he freaked out!  He first tried to bolt and then changed directions and cut directly across my path, putting his body directly in front of my “rapidly” moving body.  There wasn’t any question that I was going down.  All that remained a question was WHAT would hit the ground first and HOW BAD would it be.

 

Bad enough to instill in my body a fun little thing it likes to do whenever I fall because of the MS.  It’s called “let’s play paralyzed for a minute, or two, or ten or….” One of the things that I am trying to learn is to actually stop and allow myself to appreciate what I am accomplishing these days since it is so much more than in the past while living with MS.

In my first years with the diagnosis my mobility declined very rapidly and I went from running 6-8 miles 6 days a week, to needing to be on the Segway to manage the block and a half to the kids bus stop in less than a year.  One of the most annoying (aka SHITTY) things about this “fantastical” disease is you DON’T know what tomorrow will be like.  HELL there are times that you don’t even know what the later part of a given day might bring about.   Although I have thought I was welcoming and embracing the improvements in both mobility AND symptoms that I have experienced, I realized that I am not REALLY and TRULY allowing myself to accept or enjoy it.

Part of this is because I feel guilty saying anything, when I know that there are SO many others out there dealing with crap and experiencing things way worse than anything that I have yet to live through.  Another part of it is the not knowing (and believing) that this “feeling good” is going to last.  The truth is, it won’t.  Having another flair up, or experiencing more symptoms is inevitable because no matter how much better I might be doing or feeling, it doesn’t erase the fact that I happen to have MS and there doesn’t happen to be a cure for it.

Although I have improved immensely over the past 5 years I am constantly waiting for the other shoe to drop (OR should I say fall.)  To have MS swoop back in and take over my life again.  Have it become that all consuming thought that rings through my head over and over again…”I have MS, I have MS.” The doubt that comes hand in hand with that damn voice is FUCKING ANNOYING.  It’s message reminding me that I am NOT who I was before; that I am “marred” with this disease and maybe, just MAYBE I won’t be able to do something that I set out to do.  That “something” could be big, like traveling for 17 hours across the country with the three kids to visit my folks.  I  NEVER doubted my ability to be able to JUST DO IT before the MS…I just DID it.  But then with the diagnosis (and THE voice in my head) I began constantly worrying…will I make it through the trip without loosing a child, or maybe I won’t make it from the plane to the bus in time because I walk too slowly, or what if I fall down right smack dab in middle of an airport somewhere, with the “fun” paralysis I mentioned earlier, dropping in for a visit.  I used to have confidence in my ability to live my life; to feel in charge and know that I could do ANYTHING that I set out to do.  It seems that MS has dampened that resolve and because of that, it has stollen a bit of ME – who I AM and how I have always defined myself.

What I hate the most is that it took away my confidence in KNOWING that I could do things; that I could do ANYTHING I set my mind too.  This thing that arrived so suddenly and WITHOUT an invitation into my life managed in a fleeting moment to rob me of things that were core to the characteristics I would use to describe myself.  I lost my confidence and in turn then lost my independence.

I work at winning this battle.  I notice the improvements to my mobility and many of my symptoms,  but I am not allowing myself to celebrate or enjoy them.  The black cloud of “it could come back tonight while I am sleeping” or hesitating to make plans or commit to something because I am unsure of whether or not I will be up for it, still lingers on my horizon.  The stupidly annoying voice inside my head STILL chanting “I have MS, I have MS” all day, every day.

Until it didn’t.  The chant wasn’t there ALL the time and there were blissful moments of silence.  I began to do things again without thinking about the MS and without worrying about whether or not I COULD do something or whether I WOULD make it through to whatever the “end” was.  I didn’t notice the silence right away.  It was a slow realization.  My handicap parking plaquard lay dorment in my glove box, I began to walk Spanky farther and farther without worrying that the pain would render me useless, either while out on the walk, or sometime later in the day.  My workouts at the gym slowly returning to levels I would hit BEFORE the “‘fantastical” disease.  I spoke in conversations with more confidence and I wouldn’t fumble for words.  I headed off for a day of errands and kid shuttling WITHOUT thinking “shit, can I make it?  Will I be able to fulfill my commitments?”  Through ALL of these changes – there was a much needed hiatus from the damn MS monster that set up residency in my mind almost ten years ago.

It wasn’t until this fall that I realized all of this…that I noticed the peaceful stillness in my mind.  When I fell and I was lying on the sidewalk with rain and the HUGE ASS hail balls pelting my face, I did NOT once think “I have MS” OR “I have fallen BECAUSE I have MS.”  Instead I was thinking “I have fallen because of my FUCKING dog.” THAT was a wonderful/beautiful thing to be thinking (maybe not for Spanky, but for me.)  That meant, in THAT moment in time, I was actually living through something that any “normal/non-MS” person would experience.  My life (and my MIND) had briefly returned to that PRE-MS freedom.

SO….by falling and getting one BIG ASS black eye and one sore and achy body, I had a moment to reclaim myself just a bit.  I experienced (and APPRECIATED) the moment for what it was – just a complete FUCK UP that ANYONE could have accomplished and NOT another MS moment!!

My eye has healed up pretty well, and the cuts and scrapes on my hands and knees are a distant memory.  All in all, I would chalk this one up to a check in the “positive” box of life.  Having a NON-MS moment kinda ROCKED!

 

American Bulldog , Being Strong with a disease , confidence , disabled , Exercise and MS , Falling down with MS , I have fallen and can't get up , living with a disease , living with MS , means of mobility , MS , Multiple Sclerosis , Pain , positive attitude

THIS POST!

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Last week, while spending a bit of time on Twitter, trying to get the hang of it (which btw, you really can’t….it just doesn’t make sense) I somehow or another happened upon @ATOWalksHard.  I don’t know if I found them, or they found me, but we were united.  As I shamelessly plugged Orange Man’s story ( as his newly designated pimp) the individual on the other end of @ATOWalksHard was plugging their own MS thing.  In my ever optimistic way, I immediately thought “match made in heaven” type of shit.  Wedding bells, flowers, doves, the whole nine yards.  Orange Man was going to go for “a walk” with his new found friends.  I offered to write a post about this event (Orange Man’s dowery) in the hopes of him getting out in the fresh Michigan air for that “walk.”

 My initial thoughts were probably typical of many when hearing about a fundraising event by a group in the Greek system of our colleges here in the states.”Yea, sure.  “Hard Walk” – does that mean only hard alcohol is served on this walk?  Or maybe it is just “hard” for the pledges that they send out into the frigid Michigan winter air?

 BUT what I learned as I jumped onto their social media: ATO Facebook (head over and LIKE) and Twitter (go ahead and follow) and began reading the blog that was created from past events and watched this You-Tube video and this one  REALLY blew me away.  This wasn’t the beer chugging, toga-wearing, ignoramuses that I had expected to be making this “little” walk.  This was not Animal House part 3, 4, 20, or however many years have gone by since that movie came out.  This was an amazing group of guys (some not much older than my oldest child) that froze their asses off for 160 miles, in 8 days.  Let me repeat that….

160 MILES IN 8 DAYS IN BUTT FREEZING TEMPERATURES!!!!!!!!

DONATE HERE!!!

This is a group of young men that have ALREADY figured out how amazing it feels when you are helping others (wouldn’t our world be better if EVERYONE figured that out by the time they were their age?) They have learned about making a COMMITMENT and then seeing it through (AGAIN wouldn’t  it be nice if we all had learned that by the time we were their age?)  AND they have learned the value in joining together as a group to tackle what might seem insurmountable. Which is something that I WISH I remembered more often…..

STRENGTH IN NUMBERS!

ATOgroup image ATO group 2

STRENGTH…IN IT’S RAWEST FORM!!!

DONATE HERE

This group has raised OVER $100,000 since their first walk in 2013 and all proceeds go to the National MS Society.  That is no small number!  THAT is a number to be proud of….to promote, publish and brag about!  Shit…I have had this “fantastical” disease for almost 10 years and that is WAY more than I have ever raised!!!

So, why do they do “IT?”  Why do they walk ONE HUNDRED & SIXTY MILES in brutal weather conditions for MS?

Having been in the greek system (MANY years ago) I was happy to hear that each Greek house still has a philanthropic element to their group.  Each fraternity and sorority that exists at a college or university can chose what institution or cause they want to support.  The year that the Kappa Lamda chapter of Alpha Tau Omega (ATO) at Grand Valley State University learned of another chapter doing a walk for a charity, they had a brother in the house whose mother had just been diagnosed with MS.  It was a “hot button” of an idea and quickly became this groups focus charity.

This will be the fourth year that “they” walk – and the “they” is because the brothers that founded this walk and MS fundraising event have graduated and moved on, but there are new brothers that are coming in; the newly initiated that are learning from those that were there, and those that remain. Learning to be good people doing  good things to help others.  So far they have….

WALKED A TOTAL OF 480 MILES IN ASS FREEZING COLD TEMPS!!!

&

HAVE RAISED OVER $100,000  FOR MS!!!

 

Walk Hard 1

 

DONATE HERE

 One of the brothers, that was a freshman last year wrote a post on the groups walking trip blog that resonated with me.  It can be read HERE, but I also wanted to highlight some of the things I read and heard while learning about this amazing group of men doing amazing things for those of us that live with Multiple Sclerosis.

“Sitting on my couch at home two days later, slowly recovering proper function over my limbs and desperately trying to remind myself that going upstairs didn’t always take five minutes, I realize now more than ever the importance of the event in both my life and the lives of those diagnosed with Multiple Sclerosis.”

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“It wasn’t until later when I had directly seen the effects of multiple sclerosis and the gratefulness those diagnosed with the disease showed towards our walk that I grasped the importance of Walk Hard.  MS is exceedingly more prevalent than I had first perceived it to be and it only became apparent as those affected told me about their stories after learning of my involvement. Suddenly I wasn’t participating for me, I was participating for them. This event is so much more than raising money and walking…”

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“She told us she has MS and it shocked us.  We met someone on the journey, that we were helping…It was a very humbling experience .  Really hit us as a group, knowing that what we are doing affects so many people…”

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“It’s one of those moments I don’t think I’ll ever forget, and definitely something that I will remind myself of to keep up morale during the walk. It’s an honor to be able to say I’ll be walking for Mina this year.” 

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“…we’ve found that our passion has only grown…so we’re constantly on the look out for new ways to spread awareness of MS.  Moreover, we’ve found that the key to this event’s success is adaptability, and being able to adjust to new challenges…”

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HHMMM “key to success is adaptability and being able to adjust to new challenges.  THAT sounds a bit like MY life and how I have learned to roll with the punches and continuously adjust to the “new normals” that come my way.

I have a child that is heading off to college next year.  Truthfully I had hoped that he would avoid the Greek system and being a part of a fraternity….but I now have to admit, if he were to join a brotherhood that has members like these guys, with the same values, empathy and drive, then I am ALL for him going Greek!

DONATE HERE

Here is what I have to say about all of this…

IF you have donated to MS in the past OR you are thinking of doing so now OR you are planning on donating in the future-this is a DAMN good group of people doing amazing things!!!

REMEMBER…They are

FREEZING THEIR ASSES OFF FOR ALL OF US LIVING WITH THE DISEASE! 

ATO b:W group

DONATE HERE

ATO Walk Hard event , Fundraising for MS , inappropriate , living with MS , MS , MS Awareness , MS Charities , Multiple Sclerosis , National MS Society , social media , Twitter , Uncategorized

Orange man tired

The Orange Man Project

 

Game on!!!

 

 

For those that read my last post, I apologize for a bit of a repeat but want to make sure that everyone is up to speed.

(The “How to make your very own Orange Man” video is below)

As I said in my last post….this is the shit that my mind comes up with in the wee hours of the night.  Orange Man appeared in my life one day when Shawn sent me a picture of Orange Man hanging out in a coffee shop.  Then later sitting on a shelf, and lastly face down on a keyboard tired from a hard day at work (pic up above.)

Last week I shared a few on social media.  AND then…..I woke up in middle of the night thinking…..”hey, ORANGE is the color used for MS – Sooooo Orange Man should SUPPORT MS!!!

And…Orange Man’s presence in the MS community began to take root.

FIRST there was his Twitter handle: @OrangeMan4MS

THEN his very own Instagram account: orangeman4ms

My idea for a fundraising opportunity with Orange Man began to take shape.  

I was sent words of encouragement….

 

“it will be global”…”if u build it they will come”…”includes people in the process”

 I am hoping that MSers (and other people) ALL over the world will take pictures of their Orange Man’s adventures and then share, share, share!!!! And then ask the people they know to do the same!

On twitter (@OrangeMan4MS)

Instagram orangeman4ms

OR

on Facebook BBHwithMS

Where ever you share, just be sure to use

 

#OrangeMan4MS

 

WHERE will he go?

 

 

WHAT will he do?

 

 

For those living with MS it might be something that YOU yourself can no longer do OR something that you are thankful that you CAN still do.  The possibilities of what this little Man can do  are endless– just like all of us living with this “FANTASTICAL” disease. (If there is a story behind what your Orange Man is up to, please feel free to share.)

If The Orange Man Project takes off and I gather photos from here, there and everywhere I would like to then put together a book with the images and stories that you share.  If  it makes it that far, then a portion of the proceeds will go to a Multiple Sclerosis charity – something like the National MS Society OR Kiss Goodbye to MS.

****SIDE NOTE****

If you make yourself an Orange Man and want him to stick around for a few days (before he dries out and shrivels up) put him in the fridge in a Ziplock bag with a slightly damp paper towel.  He should be good for a few days

 

What adventures will Orange Man have?

 

Orange Man Surfs Up Use This

Book , Books about MS , Fundraising for MS , MS , MS Charities , Orange Man , reasons to laugh and smile , Uncategorized

Orange man tired

MEET Orange Man

OK…..So THIS is the shit that I come up with in middle of the night, when I SHOULD be sleeping.

Orange Man was conceived one day a while back when Shawn made one for me out of an orange peel. Over the next few days he kept putting him in funny places and sending me pics while I was at work…..which was super appreciated since it ALWAYS brought a smile to my face.

Last weeks I shared a few on social media…. AND then…..I woke up in middle of the night thinking…..”hey, ORANGE is the color used for MS – Sooooo Orange Man should SUPPORT MS!!!

The GRAND plan behind Orange Man is that I am going to post a tutorial video on how to make your very own Orange Man and then ask MSers (and others) ALL over the world to post pics on his twitter page (@OrangeMan4MS) of their Orange Man adventures – doing things that they no longer can do because of MS OR things they are thankful that they CAN still do.  I figure their are endless possibilities of what this little Man can do – just like all of us living with this “FANTASTICAL” disease.

IF alls goes well and people actually DO this, I hope to then create a picture book, with Orange Man images doing all sorts of things all over the world with proceeds going to an MS charity like the National MS Society OR @KissGoodbyeToMS

So here is my question….I am wondering…..would YOU take part in this?

I am just trying to gauge whether it is an idea that would fly or if this is just another one of my hairbrained ideas that my MS riddled mind comes up with in middle of the night.  I keep saying that my brain should be hardwired to my Twitter an Facebook feeds.  It’s amazing the crazy ass and funny shit I come up with in the wee hours of the night!!!!! I would love to hear from you about whether of not you think you would take part – comment right here on the post or drop a line to and follow Orange Man himself over on his VERY own twitter page !!!!

Orange Man is headed off to his next adventure! Surfs Up!! Follow him over on twitter – handle is @OrangeMan4MS.

Orange Man Surfs Up Use This

#mssociety #KissGoodbyeTo MS

Facebook , Fundraising for MS , Kiss Goodbye to MS , MS , MS Charities , MS Support Groups , Multiple Sclerosis , National MS Society , Orange Man , Twitter

As you may know, I recently found the time to put together the list of all of the Multiple Sclerosis Resources that I have found over the past few years.  One of the sections that I was most excited about putting out there for the world to see and use was the list of books about MS.  When I was first diagnosed there were a few books out there, but mainly ones that were medical in nature; whether describing what MS is, listing common symptoms or suggesting foods or a diet that might help those living with MS.

I was super excited to find so many more options out there now, especially ones written by other MSers, sharing their stories.  I have had the opportunity (and pleasure) to read a number of these memoirs and thought I would begin a new  thing here, which is to share my opinions on those books.  I have mentioned that I have written what can be construed as a book, that is still in rough-draft form and “gathering dust” up on a shelf.  Because of this, I am all the more eager to read about what others have thought and felt while going through the process of being diagnosed and then living with the disease.

Although each author is as unique and individual as our MS is to each of us, I find an immense amount of validation to read someone else’s words, describing things that I myself have lived through.  For a long time, I didn’t talk about many of the details of what I was living with because I believed that when it is said that “no two people have MS the same” it meant that no one else would know/understand what I was experiencing or trying to describe. (Like when I say that I have NO feeling from my waist down, but that my legs are in constant pain, feeling like they are on fire from the inside….which is it?  Can’t FEEL or FEEL pain?!?!?!?  Even I can see the oxymoron-ness of this.)  Finding out I am not alone is one of the most valuable things that I have gotten out of this blog (and my many MS friends on social media) – Apparently I am NOT actually as “unique & individual” as I thought….because there are SO many others out there that DO know what I am talking about, and DO know how incredible it is to hear someone else describe those things that you couldn’t put into words or maybe just didn’t think that anyone would ever understand.  THAT is incredibly powerful for me.  It makes me know that I am NOT in fact “A MeSs” as my  book title suggests and that there is strength in numbers.  We can help each other – because even if our stories are different, they all have that common thread that made our paths cross if the first place…..this “fantastical” disease, as I like to call it.

The first book that I am going to review is also the first of this type of book that I read:

The Dog Story: A Journey Into a New Life With Multiple Sclerosis

by Matt Cavallo.

DogBook 3

 

Finding and choosing this memoir as my first to read ended up proving to be very fortuitous for me. There were so many “resonating moments” (when you are reading the words and thinking OMG – EXACTLY) and I immediately felt a closeness (and kinship of sorts) with Matt.  Even though I have never actually MEET him, or even spoken to him, I feel like he is someone that I would call a friend. That speaks to the talent that Matt has as a writer and as a story-teller.  He opens up his life, for all to see and by the time you are done reading about his journey, you feel as if you just spent the evening with him, chatting over a few beers.

I began to think of him as ME as a dude.  Like me, he is not afraid to put it all out there….talking about some of my favorite topics like SEX and PEEING and SHITTING and”URINATION CONSTIPATION!” He does not hold back on stories like losing his “anal virginity” (“I usually like to at least know the name of the person that I am going to be that intimate with”) during his journey to figure out what was wrong with his body.  His description of having an MRI (or two) and what he thought and felt while in the tube, were a vivid reminder of what the experience had been for me as well.  The pain he experienced after the spinal tap had me cringing.  Not only because of my own experience with this but because he does a phenomenal job of putting into words what it actually felt like, which many know, is no easy task.

All of this is shared in a brilliantly humorous and brutally candid voice that you will quickly come to love.  From his description of “flailing around like a beached whale”  to realizing he is peeing without feeling it (been there done that) he hits home with the realities of what it is like to go from being happy and healthy to learning that you have an incurable disease.  Although Matt’s sense of humor rings through in almost every story he shares he also talks about the raw feelings that he goes through while trying to grasp his new realities.

Life changes when you learn you have a disease like Multiple Sclerosis and Matt shows just how strong, resilient and resourceful he is in this awesome memoir.  His life has changed a ton since he was diagnosed with MS but as he says in the book…

“the key is going to be to keep moving”

…even if he does “walk like a penguin” sometimes.

My copy of Matt’s book is a bit dog-eared (GREAT pun, huh?) but there were so many moments in the book that I wanted to be able to remember and return to, that I just couldn’t help but mark a “few” pages.

dogbook5

 

 

Some of my favorite lines from The Dog Story are:

“best pimp-strut imitation”

“wobbly boy”

“manipulated myself into an uncomfortable wedgie”

“I recognize that voice.  It is God.  I mean Radiation Man, the radiologist”

“I am lying in the middle of the hallway on my back in a hospital gown with a bag of pee beside me”

“No pain. No pain.  They meant KNOW pain.  I did not know pain. Until today”

“I got fucking hit by the fucking bus!”

ABOUT MATT CAVALLO

Matt Cavallo, MPH is a speaker, author and clinical educator with a focus and passion on improving the patient experience in healthcare. Matt has worked with hundreds of hospitals across the county sharing his story, knowledge and tools to clinicians and hospital administration to evoke positive change within institutions. Matt is also active with several patient-centered charitable organizations.
At twenty eight years old, Matt seemingly overnight went from a fully-functioning, healthy man to someone who was numb from the waist down and unable to walk. Matt’s patient experience presentation follows him from the initial onset of symptoms through the care continuum and adapting to a new life with a chronic illness. During the lecture Matt evokes emotion while he discusses overcoming the physical and emotional challenges associated with having a chronic disease. The presentation includes a mystery diagnosis component that will have the clinicians guessing until the devastating diagnosis is revealed. Your audience will laugh, cry, and in the end, feel hope and be reminded of why they got into the medical field and the difference they make in the quality of life for people like Matt.
Avonex , Book , Books about MS , dealing with disease , Falling down with MS , living with a disease , living with MS , Motivational Speaking , MRI , MS and spinal tap , MS doctor , MS Resources , Multiple Sclerosis , Neurologist , Problems with Sex and MS , sex , sex and ms , Uncategorized , using a cane

chase-catch-dream-big-picture-quote

My life has changed SO much in the past 10 years, when I sit down and spend any time thinking about it, it really is mind blowing. When I was first diagnosed with MS – I was blessed to have a doctor that seems to have understood who I am and how I deal with things. When the day finally arrived that he was to inform me that I had MS, my immediate and uncensored response was “OH FUCK!” Without missing a beat, he calmly responded “No, this is NOT and OH FUCK moment. This is an OH DAMN. Your child gets Leukemia, that is an OH FUCK moment. Your spouse is instantly killed in a car crash coming home from work, leaving you to raise you 5 children; THAT is an OH FUCK moment. This is simply an OH DAMN moment. No one dies from MS – and you are going to go on, and live your life, and be OK.”

Those words, although to some may seem callous, were just what I needed to hear, and they have remained with me through all the ups and downs that I have gone through since that day in his office. Because of what he said, but also because of the way that I have always viewed life and all that comes along with it, I have always been able to see the humor in my life (my reasons to laugh and smile.) Early on, I began to write the stories down, things that happened and things that other people said and did. At first, it was simply intended to be a journal – the journal that I have meant to write and keep for the past 35 years, but I never seemed to manage to stick to it.

But this time, it was different, because the issues and things that had held me back in the past, now seemed so irrelevant, or maybe don’t even exist. I remember sitting down, pen in hand with yet another beautiful leather bound book I had purchased or received as a gift, swearing that this time would be different, that I would write every day, even if just a sentence or two, to record my life, the things that I think and feel. But what held me back, and would eventually led to my “daily” writing, turning into “weekly” to finally not remember where the stupid journal was anymore, was never knowing what “voice” I was to use. Was I writing it for my ears only? Or was it something that I was writing to confirm and validate the life I was living and the person that I had created to fit what I perceived others wanted me to be? Because those two things were diametrically opposed to one another, and I could not manage to come to terms with the differences between the two, or figure out who it was that I wanted or needed to be when writing.

Getting MS made me stronger. It made me finally believe in myself again, to remember who it is I once was, that I left behind somewhere years ago, in a never ending quest to make others happy and ensure that everyone liked me. The minute I sat down to write, once I had MS, there was never any doubt, no questioning what voice I was going to use, who I was going to be. I was finally going to be ME again, through and through, because I realized that only that person was going to make it through; not the one based on what others wanted or expected. I don’t think that person would have been able to confront the disease head on, and accept it; to genuinely find the reasons to laugh and smile rather than use it to seek sympathy and pity – finding the reasons to feel sorry for oneself. So – as crazy as it sounds, getting a disease that makes people weaker, both physically and mentally, made ME stronger and allowed ME to finally be myself again.

Although I have made huge strides in trying to create a new life, that is based solely on truth and honesty, and to believe in and love me, with all my flaws and faults along with the good things innately entwined in my character, I have a long way to go on this journey. I have always put others in front of me. Sacrificing things and deadlines that are involved in my life, to help others in pursuit of achieving things in their lives. I now realize that this is probably a major reason for how or why I ended up with my EX. I think about others and what they are thinking and feeling at all times, in an all consuming way. In an eery way, it rivals how a narcissist thinks of them self first and foremost constantly and always. The tunneled vision alters one’s perspective of everything. Whether you are thinking about yourself or others constantly, neither is an open and realistic view of life and all that happens, and neither allows you to have balance in life.

I don’t know why I am wired that way, but I also don’t think that I need to spend thousands of dollars with a therapist trying to find the answer. I am slowly beginning to see these things about myself and to understand how they may harm me and the dreams that I have for my life. Being able to see this, along with finally being ME again, has enabled me to find the people in my life that really DO matter. Living with MS forced me to decide what really matters; to constantly ask the question “is this worth my time and energy?” I now work to fill my life with only the best of things. I try to make each moment count and strive to strengthen the relationships that do make the “cut” and are still there when the dust settles. Those are the things and the people that matter and although being diagnosed with a chronic disease might have forced me into an unexpected “purge” of time sucks and energy drains it leaves me with the best of the best – the things that count.

Moving forward I plan on appreciating what remains rather than wasting time thinking about what was lost. MS and divorce may well have led to fewer friends (and invitations) but those that remain, are the ones that I would want around when the ship starts to sink. I am not ever going to be the one to embrace the complete “holistic” way of living (vegan eating, green smoothie slurping, yoga going gal doesn’t seem to be in my future) but I do know that I am growing, a work in progress, learning more and more about myself. I am spending time realizing things about me and finally putting myself first….sometimes. What I am choosing to take away from this is that everything in moderation is a great way to face life. So I may well stop off and have one of those green smoothies, I might just decide to take a Yoga class with Piper and go for hikes with Spanky but I am also going to sit by the fire-pit in the evenings enjoying a cold beer with Shawn, eat food that isn’t considered “healthy” when the urge strikes, take a nap when I feel like it and last but certainly NOT least give my dream of being a writer a genuine shot this coming year!

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What dreams and goals do you have for 2016?

Being Strong with a disease , dealing with disease , Doctor , Dreams , living with a disease , living with MS , MS , MS & friends , Multiple Sclerosis , positive attitude , reasons to laugh and smile , smile & laugh , Strength to cope with MS , Uncategorized , writing

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Wishing everyone a wonderful holiday season, filled with friends and family, laughter and cheer!!!

I created a new page on my blog

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Resources – ALL THINGS About MS

 

I have included the link here because it seems that I have made some error, as it is not appearing along the menu bar where you see “Home,” “About Me”  etc.  It also seems that the normal email notification did not go out to all subscribers.  If this a duplicate, my apologies but I did want to make sure to share it, as there are SO many amazing blogs, sites, groups and videos out there.  There are so many great MS blogs, websites for Multiple Sclerosis, books about living with MS, videos and even Apps for MS that can help in many ways.

I am constantly amazed at the “AHH HA” moments I have as I read someone’s words or watch them on a video, and they are describing MY pain, MY spasticity, MY bladder issues or other things that I have experienced.  I tend to think NO ONE will fully understand; not that they won’t sympathize or have empathy, but that they won’t KNOW what it is that I am trying to explain.  Especially when you hear that everyone has a “different” MS, that no two people have the same symptoms.  Hearing that over and over again I tend to then put MY MS, what I feel and live with in a box that is labeled with MY name only.   But then I realize that I am wrong, I am NOT alone in this and although the sum of what is MY MS does not mean that others don’t share SOME of it.  We may not all have ALL of the same symptoms but there are plenty of us that have a few in common.   Reading someone else’s words of what I struggle to put into words always leaves me with goosebumps…it’s that moment when I think…HOLY SHIT!!! … they DO know what I mean (and what it feels like) when I say that my legs feel like they are one fire from the inside….that my feet and legs constantly feel heavy and hurt, but at the same time, I can’t really feel them….OR that every day (good or bad) by late afternoon I hit a wall and everything from head to toe hurts.

I will find just one blog post, a tweet, or a video and I will be reminded again that I am NOT alone and that sharing HELPS!

*****I realize that it is nearly impossible to have a complete list of ALL MS resources, but I did my best and will continue to add as I meet new MS friends and find new sources of help, advice and sharing.  If you have or know of any resources that are not on the list, PLEASE post a comment here OR email me @ meglewellyn@gmail.com!*****

 

Although I don’t intend for this to be my last communication here before the holidays end, I wanted to send out warm wishes to each and every one of you.  Although my Christmas’s may look a lot different from how they were when I was a child, when my kids were little, before the MS, and before the divorce, I am learning to embrace “different.”  I may not get to putting up all the decorations, baking 17 kinds of cookies, or wrap presents quite as beautifully, but I think that I AM enjoying each little thing that I do accomplish much more than in the past.  Before, I think my life was lived through a haze of “GO GO GO” drive, get it all done and keep it together.  As each year passes, I am trying to not beat myself up so much; to STOP harping on what I DIDN’T accomplish and appreciate what I DO GET DONE!  A lot has changed and there is more change on the horizon but I am going to work hard at loving each minute of it, rather than just simply living it.

Apps for MS , Being Strong with a disease , Blogger friends , Books about MS , MS Blogs , MS Resources , MS Support Groups , social media , Strength to cope with MS , Videos about MS

Talk about a long ass hiatus! I stopped writing per the advice of my attorney – when it seemed that my “wasband” was trying to use my blog – and what I wrote about – against me in court. I don’t have anything to hide, nor do I regret anything that I have put out there for all to read, but I listened to her anyway, and went silent.

When the period of “censorship” was over (court decision made) I intended to take up writing and sharing again….but then the summer turned into fall…fall into winter…winter into spring….you get the point. I just didn’t write! I’m still HERE , I still have MS, and funny shit keeps happening, but I wasn’t writing about it. I don’t know why initially, but as more and more time went by and I continued to receive email alerts that someone new was following the blog, I began to get nervous. Rather than the great creative outlet it once was, I began to second guess myself – wondering if a story I wanted to share was “good enough” for everyone to read; If my writing was worthy of people’s time. It became a burden. Something that I stressed about; felt guilt towards and so I continued the silence…

Today I have decided to break the silence and write. I recently found myself faced with a question…

Does being vain trump being in pain?

Would you choose how you look, over how you feel?

One could argue that these two things are intrinsically related; that it is important to feel good about how you look. But I am talking about a specific feeling – PAIN. Would you choose to be in pain, if you knew that you could/would look good? That what the outside world saw was someone that was rocking it, handling/managing their life and taking care of themselves? We all know that people’s perceptions of us are strongly linked to how we look. It’s actually one of the things that many of us struggle with every day. The “I may not look sick, but I feel like SHIT” syndrome. People make judgements (intentionally and unintentionally) based on how we look. It may be a sad commentary on what matters in our society, but it is the truth.

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PAIN!!!!!

I’ll start out by simply saying…it SUCKS. It sucks the big moose kaka! It is the ONE constant in my life these days; the ONE part of my MS that just does not want to give me a break. It’s there every single day when I open my eyes and it is STILL there (and usually worse) at the end of the day, as I shut my eyes and hope to fall asleep.

I have tried a number of different pain medications, in the hopes of finding one that will finally work, and will provide relief from what has become a constant in my life. Being “used to it” doesn’t make it better; it just means that I have learned to try and cope with it. When Shawn I first started dating, he encouraged me to go and talk with my doctor – to be honest about the pain. My mantra of “It doesn’t matter how bad I feel, as long as I look good” just wasn’t cutting it.

Our visit with the doctor and my open and honest confessions led to me giving Methadone (Dolophine) a try. Perhaps your initial reaction in similar to the one I had…METHADONE?!?!? Isn’t that what they give recovering heroin addicts?!?!? Why yes…yes it is. But it also can be used as a pain medication, as it is actually synthetic morphine. Much to my surprise (and DELIGHT) it worked! Not 100%, and sometimes not even 50%, but it did provide me with more relief than any other medication that I had tried.

As with anything good in life, this new “magic pill” did come with it’s prices. First, being a highly regulated narcotic, my doctor would only write a one month’s prescription at a time. That meant calling and dropping into his office much more frequently than I had ever done in the past, and certainly way more than I wanted. Another hassle was that often times my local pharmacy wouldn’t have enough on hand to fill my 30 day prescription! Which always confused me. If they know that I get it filled every 30 days and it is for the same amount, one would think that they could make sure to have it, knowing that I would be in a day or two before the 30 days was up. Is there not pre-orders in the pharmacy world? Apparently not. Or they couldn’t do that. Which meant finding another pharmacy, one that would have it on hand. That meant going somewhere new, with staff that didn’t know me, and I would have to provide identification each time. Certainly not a big deal, but just one more small inconvenience.

Small issues aside, it did help! That was huge!

For the past 5 years my mobility has improved immensely. I have not had to use my cane or Segway! (The “anniversary” of putting both away was on November 11th!) The one thing that has not improved is the pain. Finally finding some relief was amazing! And it remained amazing…for a while at least. The changes didn’t happen suddenly, but instead… slowly, over time. The dose that I was taking wasn’t working as well, and the pain began to creep back in. It was subtle, and even when working I still had pain most of the time so I really didn’t notice. Until… I did notice! Once again, the pain was BAD!

Again, per Shawn’s urging, I made another appointment with my doctor, to talk about the pain (what a pain in the ASS!) I learned that as with most opiates, my body builds up a tolerance to the drug and so over time the only way that I can get the relief it once provided is by increasing my dosage. Which was not an option for me. I had already begun to be concerned about the length of time that I had been taking it, and certainly did not want to take more of it.

So we talked about other options, and he suggested that I try Amitriptyline. It is most commonly used for depression, but has been known to help with pain as well. I was willing to give it a shot – thinking “What’s there to lose? It can’t get much worse than the pain that I am experiencing?” Boy would I realize how stupid that thought was.. things definitely could be worse.

I have learned to ask two simple questions whenever a new medication is being prescribed. ONE – Are there known side-effects and TWO – can I drink alcohol with this medication. I was given the green light on having my drink of choice when wanted and was told that the only “significant” side-effect was sleepiness. They weren’t kidding! The first three days I took it Shawn had a hell of a time trying to wake me up in morning. He would shake me and talk to me, over and over again. I would apparently respond with some senseless babbling and then just konk out again. It took him over an hour to just get my ass out of bed! And this was when taking only 25% of the dose I would eventually build up too!
As the dose increased and the weeks went by, the pain did get better, and for that, I was grateful. It made me realize how bad it had gotten before going to the doctor again. Perhaps it was because I was fully immersed in this small amount of bliss that came from finding some relief from the constant pain. Or maybe it was just because I don’t pay much attention to my weight or what I wear from one day to another. But, for whatever reason, during those first few days/weeks and months, when I was back to living with pain that was “manageable” I began to gain weight. Rather rapidly, I might add. Within 8-10 weeks, I put on 20 lbs!!!!!!

I realize that given my starting weight that adding 20 lbs might not seem to many to be “pushing maximum density” and some even say that I now look “healthier”, but for me, this was a big deal. I no longer felt good about myself. No longer had confidence in how I looked.

I LOST my BBH!!!!!

 

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For the first time in years, I found myself extremely self conscious, and it didn’t help that once I hit 15 lbs. many of my clothes no longer fit and by the 20 lb. mark, I was down to very few things I could manage to get into. In my mind I was fat. Feeling bloated and embarrassed to go out and be seen, I dreaded running into anyone that hadn’t seen me (even in a few months) for fear that they would make a snap judgement and think “wow, Meg doesn’t look good” and then credit it to my MS. The last thing I want anyone to think is that I let this stupid disease “get me.” I am too strong and stubborn for that!

As I struggled to try and resolve the weight gain issue; squeezing gym visits in whenever I could and downing copious amounts of water….it suddenly dawned on me. It had been days and then weeks since I had had a bowel movement. CRAP, here we go again…..

I was FULL OF SHIT again!!!!!

Knowing that this most definitely could be one of the contributing factors for the weight gain I began trying to remedy the situation. Although I was already taking one dose of Myralax a day, I increased it to two (and sometimes even three). I continued chugging water and ate what seemed like a million prunes. I tried Smooth Tea, probiotic/laxative gummy bears, Dulcolax Laxative Comfort (bisacodyl tablets), GoLive Probiotic & Prebiotic Drink, Activia yogurt, Kefir yogurt drinks and the natural laxative, Senna. I never knew there were so many “full of shit” products out there on the market.

Nothing really helped. I made a point to hit the gym even more frequently, figuring I would be killing two bird with one stone – being more active would help with my GI issues and hopefully help take off the pounds. As I hit the elliptical and started racking up my miles, and spent time working on my strength training and muscle tone I realized how fortunate I have been in the past to not have body issues as an adult. I have been comfortable with who I am and what I look like. To be struggling with that now, makes me have so much respect for anyone that has chosen to take an active role in trying to combat their weight and/or health issues. It takes a hell of a lot of “chutzpah” to go into any gym where you know that people ARE going to look at you (and maybe even judge you) when you aren’t feeling comfortable in your body and confident about what you look like. I have been active my whole life, and I had never given much thought to this and I now have a huge amount of respect for anyone that takes the humongous step of not only joining but then actually going to the gym if they struggle with body image issues!

Suddenly I wasn’t the “don’t put much thought into it, thrown on cloths and go” gal. I would end up going through 5 or 6 outfits while getting ready for work in the morning. Not because I didn’t like one, but because it didn’t fit. The rational side of my brain knew that the clothes that I have are in very small sizes and that there isn’t much room to “grow” in much of my wardrobe. But knowing that didn’t make it any easier when the fourth skirt doesn’t fit or when my favorite sweater is simply way too tight these days for office attire. It took a toll on my confidence and really began to “weigh on me” (couldn’t resist the pun!)

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Eventually I did call my doctor’s office and the nurse suggested a suppository. My response to her was “Yes I would LOVE to try the suppository” (I did not think that was a sentence that would ever come out of my mouth!) They called in an order for bisacodyl suppositories. They did work initially but even though I continued to take Miralax, Senna and prunes it was soon back to days/weeks between bowel movements.

On a particularly down day, when I was feeling as if I was just not going to get over this hurdle and that I was going to continue to get bigger and bigger, until I eventually exploded… I googled Amitriptyline. It seems that weight gain in one of the most common side effects!?! HUH?!?! That was not mentioned! Ever! I can’t say that knowing this would have deterred me from giving it a shot, as I didn’t think that putting on weight would ever be an issue for me. But it still would have been nice to know. Perhaps the “heads up” would have made me at least notice a bit sooner? Another thing that struck me as a bit odd – was that this medication is primarily used in patients that are struggling with depression. Seeing how I was feeling (down in the dumps, fat and ugly) I couldn’t really see how this could be a GOOD drug for someone suffering from depression!?!?!
An email to my doctor led to this exchange with a nurse:

“Dr says yes, Amitriptyline CAN in fact lead to weight gain. He suggests perhaps you try Nortriptyline. It is a very similar medication that does not usually have the same weight gain issues.”

Why the fuck didn’t they give me that one to begin with?!?! I responded with “YES…PLEASE.”

lots of side effect

As with many medications, it is not an instant; stop taking one and start the other and I had to taper off of the Amitriptyline. I hoped and I prayed that as I came off of it, the weight would come off as well…..would make sense, right? But after a few weeks, I was back down to only 25mg/night….and I was still 20 lbs heavier! It made no sense! I was still hitting the gym, and certainly wasn’t eating a whole lot- I couldn’t, I felt so damn full all the time, thanks to the on going saga with my GI tract and ability,or lack there of, taking a crap!

This is when I made a decision, that in hindsight may not have been a great one. I decided that I was going to come completely off the Amitriptyline and not start taking the new medication until the weight came off. I made the conscious decision that being in pain was not as bad as being unhappy with my appearance. Having a teenage daughter that I have raised to be confident and to love her body (whatever size it is) I completely realized just how WRONG this decision could be viewed. That there was a strong argument for the fact that I was being a complete hypocrite. But at the end of the day, I just wanted ME back. I wanted my BBH back!!!!

This is the point in the story when my vanity driven decision goes from bad to horrible. During this period of time, that I was playing medication hold out, the pain returned. It came crashing into my life like a freight train and it was bad…REALLY bad! I realized that this was the first time in 9 years that I have gone without being on anything for the pain. It made me realize just how much the medications that I didn’t think were doing much of anything were in fact doing! Although I credit “reduction of stress” (aka divorce) for my immense improvement over the past five years,it seems that modern medicine and the power of the pills played a factor in it as well.

Much to my dismay, the weight didn’t go anywhere! Not a single pound shed! The days went on and I was in more pain than I have experienced in a long time and still unhappy with my appearance. AAAGGGGGHHH!!!!! I had thought that if I could get back to my normal weight, wearing my regular clothes and feeling good about myself that putting up with the pain would be a good trade off.

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I lasted only about a month and then I broke. I was still not losing any weight, but I could no longer imagine getting through the day without some break in the pain. I began taking the Nortriptyline and the pain slowly began to ebb a bit, until it was back down to what I consider that “manageable” level. I am continuing to drink water, take laxatives, miralax, prunes and other stuff, but still suffer from pretty bad constipation. I hit the gym 3-5 times a week and still – NOTHING! Not a single pound lost.

So what have I learned from this? Other than PAIN SUCKS! I have learned something about myself – that perhaps I am a bit more vain than I would have guessed? Is it horrible that I immediately assumed that “looking good” trumped “feeling good?” Given my mantra of “It doesn’t matter how bad I feel, as long as I look good” one would think that I would have known this about myself – but I guess I don’t know myself as well as I thought, because even I was a bit surprised with the conviction I showed when confronted with the question; Pain vs. Vai?. I had no hesitation in thinking that my looks (and how I felt about myself) were more important than finding relief from the pain.

But this whole experience also made me think about what it means to be vain. The fact is that I do think about how I look and am consciously aware of wanting the world to see me and think that I have my shit together. Does that mean I take pride in my appearance and how I “market” myself to the world, or does it make me shallow or disingenuous? Does it mean that I am trying to hide from the world (behind my hair, clothes and make-up) or does it mean that if I feel better about how I look, that it might make the pain just a little more bearable? I choose to go with option number two, because anything that can help me get through the day, and manage to find the things to laugh and smile about has to have some depth to it. For me, it isn’t so much that I worry about others judging me or wanting to impress anyone, but rather wanting to try and seize any opportunity to show the world that I am strong!

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confidence , constipation , dealing with disease , depression , Exercise and MS , Methadone , MS drugs , Multiple Sclerosis , Pain , Uncategorized

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For those that have been waiting/looking for an update about my experiences with Tecfidera, I DID finally remember to write one!  Truthfully part of the lack of writing about it, is there isn’t that much to say, it’s been going pretty well, but hit the end to know all the details.

Looking back, I am amazed at how different my life is.  Almost exactly four years ago, I asked my husband for a divorce.  It was not an easy decision for me to make.  I took my vows VERY seriously, I believed in the concept of “married for life.”  To be perfectly honest I viewed divorce as a failure to live up to a promise that was made.  Unfortunately, some marriages just aren’t meant to be, or to last.  I was married for almost 15 years, and we have three beautiful, amazing children.  I would NEVER change that.  But I was married to someone that was not in love with me, was not attracted to me and didn’t particularly like me.  There certainly was not a friendship that we could lean on for support and in the end, I was so tired of being lonely, that the thought of being alone for the rest of my life, seemed a better alternative to constantly hoping and then feeling let down.

As off kilter as it sounds, being diagnosed with MS was the start of me finding the strength to end my marriage.  Who would think that getting a disease that leaves you exhausted and weak, could make you stronger?  What it allowed me to do, was put myself first; to think about my needs and feelings, rather than focusing on everyone and everything else all the time.  I had many hours alone to think; while sitting awake at night, unable to sleep because of the leg spasms and pain or because of another dose of steroids to ward of the most recent flair up.  I would check into the infusion center for whatever cocktail was on the menu for that day, and spend those hours, sitting alone, and thinking.  I thought long and hard about it.  The more I thought, the more I realized that I WOULD be happier alone rather than always hoping it would change, wishing it would be better.  It was not easy; it was a long road to travel down, and I’m still not at the end of the journey but getting out of my marriage seems to have been the best decision for me, myself and my health.

Thanks to the incredible support and love from my family and friends, my life now is so different from where I was four years ago.  When I woke up this morning, I lay in bed, curled up between Spanky and Shawn, and took a few extra minutes to take a walk down memory lane.  I thought about what life was like back then, all of the differences and things I have accomplished.  By the time that little journey came to an end, there were tears streaming down my cheeks.  One might think they were tears of sadness; thinking about the times when I WAS so sad and lonely.  Or maybe from happiness and gratefulness for all that I have in my life now.  BUT both would be wrong, because as I lay there this morning on a beautiful early spring day, listening to to birds chirping outside the window, I was laughing my ass off because it struck me that today’s post could, and would be one that I have been waiting to share.  It’s the story of….

MY BOOTY CALL!!!

Back when it was ending, and I finally admitted to myself, my family and then the world, that my marriage was over, I began to think I may have chosen the wrong time in my life to finally get a divorce.  Not that I regretted what I was doing, and not because I was suddenly frightened to be alone.   It wasn’t something as profound as that.  It was for the simple fact that apparently women reach their sexual peak around age forty, which is something I didn’t know until I got there myself.  Some of what I was feeling at the time may have been heightened by the fact that I hadn’t had sex in years and longed to have intimacy in my life, but, looking back, I also figure that the age thing probably had to do with it as well.  I started to think about sex a LOT, and then I began to read in numerous sources that sexual dysfunction is a common thing for people with MS.  It is actually a question on the form that you complete at the doctors office each visit.  I had never even bothered to answer that particular question.  Since I wasn’t having sex and hadn’t had sex in a LONG time, I didn’t know if it was not functioning.  I began to wonder more and more about it, and then worry about it.  If I was going to enter back into the world of dating, I really needed to know if it all worked.

While talking to a friend from high-school, I told her about these concerns.  She made a suggestion that at the time seemed completely insane; and yet she made it sound so simple and logical.  “You need to make a booty call.”  Insane for two reasons; first, who the fuck would I call?  Second,  I couldn’t imagine ever getting up the courage to ACTUALLY make such a call let alone follow through with it and ACTUALLY have sex with them.  After all, it just wasn’t something I did, EVER.  I had been married for 15 years and even before then, when I WAS in the dating world, I had NEVER called a guy for sex.

But time, and my constant obsession about sex, and not having it, eventually brought me  back to that conversation.  I began to think long and hard about who I could call, even making a list of criteria; needs to be single, someone I already know, needs to know about my MS and seem to have a general understanding of my symptoms, willing to participate AND attractive.  I realize that beggars can’t be choosers, but I figured if I wasn’t attracted to him, it would definitely put my odds of “success” and having “it” work, at risk.  Based on this criteria, I then made a list of potential candidates.  There weren’t many.   I honestly didn’t think I would ever have the guts to actually call.  As I thought about it more and more, I realized that I was at a huge turning point in my life and that I needed to live my life the way that I want to live it; be who I want to be and not what others expect me to be.  Be true and genuine to MYSELF.  Since I found myself thinking about “it” and sex a lot, I figured that “it” and sex must be part of who I wanted to be.  Someone that could enjoy sex and have an intimate relationship be a part of my life again.

After many hours of thinking about it, and weighing my options, I finally decided on the WHO and then began to think about the HOW.  One afternoon, while sitting in the parking lot of a local grocery store, I made my booty call to someone that I had gotten to know, that actually had MS himself.  That small detail is probably THE reason that I was able to make that call.  I felt that he probably had some of the same worries and concerns, if not presently faced with them (meaning “it” still worked for him and he was still HAVING sex) that he must worry about what will happen in the future.  He met all of my criteria, and had this extra BONUS working in his favor.  Plus, we got along well.  He made me laugh, and that seemed like it might be a useful trait for what was to come.

The conversation started with “now, you can’t laugh at me.” To which he promptly responded “yeah I can, but I won’t.”  I explained to him the whole lack of sex, hitting my sexual peak, and concern about dysfunction and ended with “so will you be my booty call?”  He did laugh, a LOT.  Really, who can blame him?  Who wouldn’t laugh?  He laughed for a really long time, which did NOT help me with my nerves and courage.  After a long pause, he responded, “yeah, I could do that, after all I AM a giver.”  So, now I had my booty call (referred to as BC from here on out) but had to figure out when and where, and if I could really go through with it.  My self confidence was “lacking” to say the least; I felt like a triple D, but NOT what some might construe that to mean.  I was DISEASED, DIVORCED and DESPERATE.  I had no idea if I really would or could do it, but felt I needed to try, to figure out IF I needed to add yet another D to that list – DYSFUNCTIONAL.

The logistics were planned out so and all I had to do was wait.  Which was not easy, as I’m not a particularly patient person to begin with and add horny AND worried to the equation and it was a LONG wait.  On top of that, BC actually backed out on me, not just once, but several times.  I would get a call, or a text from him, saying it wasn’t going to work, or suggesting that he “might” have his girls that weekend.  Once, he even said he had a headache, which MIGHT have been a reasonable excuse if it wasn’t a week and half before the planned date.  There were a number of different excuses.  So NOW, not only am I pathetic enough to be CALLING a guy to have sex, but I am being turned down by the guy, and find myself almost BEGGING him.  There was more than one time that I was pretty sure my life could NOT get any more pathetic.

As the wait drew to an end, and I had received my umpteenth text from him, making yet another lame excuse, I finally decided to called him.  I needed to know what the hell was going on.  Was I really that “icky” that he couldn’t bear the thought of being with me?  Having gotten to know each other pretty well over the past year, I knew that he “talked” a good game, about women and his “conquests.”  If that was the case, then why couldn’t I just be one more notch on his headboard?  It seemed to me that I would be the “ideal” woman for him. I was NOT looking for anything BUT sex,  I didn’t live in the same city (or state for that matter) and I certainly did not want a boyfriend (or any form of relationship.) In the morning, I would be long gone.  So how was it, that he was just turning me down.

It ends up that TWO can have the same issues and concerns, especially when BOTH parties are “lucky” enough to have the fantastical disease, MS.  In the weeks leading up to our “date” he began to have his own problems and concerns over sexual dysfunction.  The closer it got to THE NIGHT, the more problems he had, and so he figured he just wanted out.  I sure as hell wasn’t going to let him off that easy.  I had managed to actually make that stupid fucking call, to admit to my fears, and open myself up to all sorts of embarrassment and ridicule.  I TRUSTED him, and I sure as hell wasn’t going to let him back out of it for the EXACT same reason that I had made the call in the first place….NOT KNOWING IF IT WOULD WORK, or if we would both be adding another label to our ever growing list of labels – SEXUALLY DYSFUNCTIONAL.

On the night that I was to meet up with BC, I was a wreck.  I don’t have a doubt in my mind that he wasn’t feeling some of the same doubts and fears, but I felt that he had an advantage over me.  One of the effects of my marriage not being healthy, is that I didn’t have a whole lot of self confidence when it came to feeling attractive.  I had said as much to BC and asked that even if he were lying, when we met, to assure me that someday, somewhere, some guy would find me attractive.  By putting that out there, I had made it more personal that I had intended, and as the hours ticked away, and he still hadn’t responded to calls or texts and hadn’t shown up, I found myself more upset about my hurt feelings than my horniness.  PLUS, I had even gone above and beyond to try and help him with HIS problem.

Once again, NOT a call I thought I would EVER make, and more than slightly embarrassing.  Just before leaving town, I called a really good friend of mine, to ask if he knew how/where I could get a Viagra.  Believe me when I say, NOT an easy ask.  First off, there is the whole “wait a minute, WHO the hell are you having sex with?” thing.  Not to be outdone by the simple fact that no healthy, viral single man is going to want to ADMIT that he actually DOES have Viagra.  After all, what is that saying about THAT person and their sexual condition?  Even KNOWING that I would be faced with these questions and issues, I called!  AND…after more than a bit of work, I managed to get one!  ONE…single…. “Mexican” Viagra.  I’m not sure WHAT the hell that is, or if it IS actually a “thing” to tell the truth, nor would I want to take it.  BUT, I had at least tried to help BC with his problems, and was feeling pretty pissed off that he wasn’t going to return the favor.

BUT….then he did arrive.  When he finally made it there, I was amazed that there really wasn’t any awkwardness.  We both knew WHY we were there, and what was supposedly about to happen, which made me cringe with the thought “weird, weird, and weird.”    Even though I didn’t know him all that well before making the call, and was extremely worried about feeling embarrassed, it just didn’t happen.  Perhaps because I made the right choice picking him as my BC?  Maybe because having MS in common provided us with some sort of bond, or understanding, that might not have been there with someone else?  I don’t have that answer, but as we sat and talked for a while, he leaned in, gave me a kiss and said “hey, you remember what you asked me?  You have nothing to worry about sweatheart, you are smoking hot.”  I have be honest and say, I could have just heard those words and gone home happy.  It’s amazing what a few words can do for ones confidence.  But, please, I hadn’t been through ALL of that for just words….

The good news was that it all did still work, for both of us.  It was a fun night.  He was kind and caring and maybe because he has it too, he listened to me about the MS and understood my fears.  He knew about the lack of feeling in my legs, and that I was petrified that my leg muscles would seize up and he took care in making sure that I was ok every step of the way. He also gave me something else that was greatly needed.  A night of smiles, laughter, and having fun with someone that genuinely seemed to enjoy being with me.  It had been such a long time since I had connected with someone on that level, and it made me realize how much I missed that, and wanted it back in my life.

I have not seen BC since that night almost four years ago, although, we occasionally banter through facebook and text messages.  I sent him a message about a week later that read “I have a new problem!  Now that I know it works and I had sex, I just want more!”  Which is ONE of the many reasons that I am so happy to have found Shawn (and his “cure for MS.)  I don’t know just how long this “peak” is supposed to last, and maybe it ended, and I am just making up for lost time, or missed opportunities?  I certainly don’t have the answer, but then again, I don’t really care.  I am just really happy to be enjoying sex and being in a relationship with someone that does too, and who wants me to stick around.

When I started writing my book about a year later, I wasn’t sure whether I would have the courage to include a chapter about making a “booty call” but the farther along I got in the book, and the more stuff that I did include, it made me realize that the only reason that I would NOT put it in, is because of some crazy, stupid notions that our society seems to place on sex, when in actuality, it’s a natural thing.  People do it.  Hell, none of us would be here if our parents hadn’t done it.  So, once I let that “issue” go, and I looked at all the other private/secret/taboo things that I was writing freely about, it just seemed logical that of course I would include it.  If my goal is to try and connect with other people that have MS (or other similar diseases) and let them know that they aren’t alone, no matter what the topic is and what happened, then I need to be willing to NOT have boundaries, to put it all out there.  One thing that I have learned from starting this blog, I am certainly NOT alone.  No matter what it is that I am writing about, there is always someone that reaches out to me (whether it be here, or twitter or fb or email) to share THEIR story, or their opinion, or to just say thank you for letting them know that they AREN’T the only one.  As I joked with one new MS BFF the other day, “no, you aren’t the only one…sorry to say, you are just not THAT special.”  No matter what “it” is, there is someone else that has had their own version of “it” happen.

I realize that it has been forever since I have given an update on my experiences with taking Tecfidera.  The honest truth is, there really isn’t ANYTHING to say.  Even the issues with constipation that the nurse on the help line assured me wasn’t from taking the Tecfidera, has gotten better.  If you have read my other updates (or my HORRIFYING story of SHIT) and are wondering IF I now know/believe that it was in fact the Tecfidera, I can tell you that I am 99% sure (and that 1% of unsureness is more that I don’t think you can say/believe anything 100%)  But, I did go off of the medication twice during the past year, because I could NOT find any way to relieve the constipation.  BUT, once I stop taking it, I return to regular within just a day or two.  The first time I stopped taking it (for what I now call MY CLEANSE) I went back on within a week, and was ok for about a month (maybe a bit more) and started to find that I was getting backed up again.  So again, I stopped, CLEANSED and started again.  BUT this time it seems to being going better, and the solution that seems to be working for me, seems a BIT odd, as I have tried prunes/prune juice, Miralax, eating MORE fruits and veggies, although I eat a LOT to start with…but the answer sees to be…V-8 JUICE.  I have NO idea WHY THIS would work, any more or better than prunes/prune juice or any of the FRESH fruits and veggies I eat, BUT the fact is, that it does.  I have now been back on it for over 3 months and having every day regular movements….SO not going to question it, simply going to buy a ton more V-8 when I hit Costco again next week!

SHOULDA’ HAD A V-8!!!

confidence , constipation , divorce , embarrassing moments , embarrassing moments , living with a disease , MS , MS and Sexual dysfunction , MS drugs , Multiple Sclerosis , Problems with Sex and MS , sex , sex and ms , Tecfidera , Uncategorized

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Death, the lose of life.  It is something that many of us have been bombarded with over the past few weeks.  First Malaysian flight 370 with 239 passengers disappears, with seemingly no trace of where it went or what happened.  Then, the horrible and tragic mud-slide in Oso, Washington.  As of this morning, 25 bodies have been found, but there are so many more people that are still missing.  Mothers, brothers, fathers, children, grandparents.  All people that had lives, had a place in this world, with people that loved them, needed them, assumed that they would be there tomorrow.

And yet they won’t, they are gone, and in both of these tragedies, there are so many left behind, with so many questions, and so many things left unknown.

As I sit and think about all of this, all of the family members and their grief and sadness, anger and frustration over the why’s of it all, I can’t even begin to imagine what it would be like, to NOT KNOW.  Although I can empathize and perhaps begin to try and imagine what they are going through with the loss of someone, I can not wrap my head around that ONE detail, the NOT KNOWING.  I can’t imagine, I truly can’t.  Even as I am writing this, the overwhelming weight of that bring more tears to my eyes.  How can they cope with that, manage to move forward, and find closure?  Thinking about it, makes my heart ache.

I obviously didn’t know any of the 239 passenger on the missing plane, and even though Oso is only a two hour drive from where I live, and I do know people that live in the general area, I don’t know anyone that has been impacted by the mud-slide.  But I am finding myself becoming obsessed with these people that I don’t know.  Not only the ones that died, but all of the people that are left behind, with the pain of the loss, and the emptiness of not being able to say goodbye, or know that the end was upon them.

This past weekend, during the exact hours that Oso, Washington was crumbling and lives and homes and memories were being crushed, Shawn and I were at a funeral service.  One of his closest friends passed away last week, having lost his 4 year battle with cancer.  It is inevitable that my mind is going to begin to blur the lines between this man that I did know, and the friends and family that I stood with at the cemetery as we buried his ashes (along with a couple of beers) with the people that lost their lives on that plane, or in the mud-slide.  It makes the loss of those that I don’t know much closer.

I woke up Sunday morning, with tears streaming down my face, I must have been dreaming about sad things (not very surprising.)  I couldn’t stop crying, and as Shawn simply held me and let me cry, I tried to explain to him why, at that particular moment, I was crying.  It was because when I woke up and saw him laying there next to me, my mind immediately went to our friend’s wife, waking up alone in her bed, as she will be for days, and months and maybe years to come.  She is young, and vibrant, and beautiful, and perhaps she will find someone else to fill that spot in her bed, to share her life and raise her boys with, but for right now, looking isn’t an option and I don’t think it will be, for a very long time.

Because those boots that her husband left behind are a damn big pair of boots to fill.  Maybe sometimes in remembering, we make more of what a person was, raise them up on a pedestal, remembering only the strengths and not mentioning weaknesses.  But in his case, it is not possible to make more, because he simply was – a great man.  A hard working, caring, loyal, dedicated, loving man, husband, father, son and employee.  HE was what a person should aim to be, someone that made your life BETTER for simply knowing him.  Yet for some unknown reason, HE is the one that is gone, and will be missed by so many.

I think of all that died on the plane, and in the mudslide, and I know that there were bound to be GREAT people that died there too, and it makes me angry and sad, because I just don’t understand it.  Why?  I KNOW that we are all going to die, that death is the inevitable end to all life, but I don’t understand why things like this happen.  WHY a great man, so young, has to die from stupid shitty ass disease.  Why 239 people that were simply trying to complete their travel plans NEVER made it to their destination.  Why an entire community was ripped to shreds in the blink of an eye.

I am NOT a person of faith – and I don’t say that hoping to raise some endless conversation about religion because I actually DO believe in God, BUT the thing that some have a hard time understanding is that I believe in MY God, the one that has been around my whole life, knows what I have done, who I have been and what I do, and HE is ok with me, who I am and what I do.  Simple as that.  After all, if he wasn’t, then he would have changed SOMETHING to make me a different person, or do something different or believe in some different way, BUT this is the path that he has given me.  And this is who I am and what I believe.

But that doesn’t give me an answer to the why – when there are deaths that just seem so pointless and cruel.  The one thing that I can take away from all of this sadness, is to stop, and really truly APPRECIATE life and the people that I love and care about.    The one thing that was repeated over and over during the funeral service, was our friend’s passion, for life and everything that he did.  He figured out what it is he wanted and then put all of his focus and time into making that happen, and in the process, created a life that he really and truly loved.  He found his passion.  Listening to all the people that talked about him, and his life and his joy in following his dreams made me take a clear look at my life, and realize that I need to take a lesson from our friend, and put more effort and focus into MY passion.  For a long time, raising my children was just that.  It is what I wanted to do more than anything, and I did it, I created some damn good little people.

But they are growing up, and they don’t need me there every minute of the day any more.  I realized that I have been in limbo, finding myself stuck in the rut of simply doing the same thing day in and day out, same thing, with nothing really exciting me.  I am incredibly lucky to have the job that I do, and although it is a great place to work with great co-workers, I certainly don’t have a passion for it.  I have spent the week thinking about it.  What do I want?  What am I passionate about?  The answer, which is right in front of me, is writing.  I LOVE writing!  When I sit down at my computer to work on the book I have written, or a blog post, I get lost, time becomes irrelevant because it is something that I WANT to do, that I enjoy.  It is my passion.

All the lives that have been lost over the past few weeks has made me realize that to have something that matters, that you are passionate about doesn’t mean shit if you don’t follow your dreams and pursue what it is you want.  If I KNOW that I love to write, and blog, but I don’t give it all that I have in trying to succeed, then it is worthless, because I am not being true to myself, not respecting myself enough to make it a priority.   It has become very apparent, that life is just too short to NOT make it all that you want it to be.  I am making a promise to myself, to remember our friend, and all that he managed to accomplish in his life, and allow myself the chance to give it a shot.  No more procrastinating, or putting other people’s needs in front of mine.  Just as our friend said in a video he made for his two young boys in the last weeks of his life –

Find what you are passionate about and MAKE it happen.  Don’t just try – simply DO IT! 

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