multiply sclerosed

{May 29, 2012}   Just some thoughts

I have been faced with “Oh my gosh, where have you been?” A question that I knew I was going to get and have to field left right and center, and yet I am still unsure of the correct way to answer it. Hell, even “how are you?’ can send me into a spin. So my question is, who do I tell and what do I say?  My answer is simply put, “in February, I as diagnosed with MS. I am doing ok. Thanks!” Simple and to the point. Is it enough? Is it too  impersonal?  Is it too much, and its “no one’s damn business?”  Sometimes I find myself rambling on, over answering and then when I do come up for air, I realize my audience really didn’t need all that answer and has lost interest. Another thing I do while explaining what MS is, to those who don’t know much about it, is try to make it sound gruesome, when it already is horrible and no doubt can, has and will be gruesome. But when I say things like “numb, zippy zaps, painful, burning, buzzing, ringing, insomnia, too hot, so tired,  15 pills and an injection everyday, debilitating, no cure and unsure future” in my mind I feel like it doesn’t sound so bad. Ok I know how ridiculous that sounds, but this is my blog, fair readers, so nyah! I guess for me I want people to understand this has SUCKED! and it still sucks, just not as hard at the moment. I get through my days well enough, I can take care of my family pretty well too, hubby has a bad shoulder and is trying to be a hero, but he is hurting and needs to handle it, soon, while I am still doing ok. My eight year old needs tests for her kidneys, she’s a trooper, but it’s draining on a little girl. My six year old is happy healthy and a pain in the patoot, just as I would want it. But with all this I have to still deal with the potential of me not being well, or at least well enough to take care of myself let alone my loved ones. My family needs me… what the hell good am I to them with this disease that we know little about and for which we can do less?   Perhaps I am feeling sorry for myself. I am not sure that I am, put it’s possible.


Denial, anger, bargaining ,depression and acceptance. Those are the “stages of grief” that we experience when there is some sort of loss. Any type of loss. I am grieving. I am grieving the loss of my former self. The pain-free, hard-working, energetic, well spoken, stable person I used to be. Now, as for how long that girl has been gone in some degree or another is for another post. Right now I’m talking about my grief.
So let’s do this systematically.One stage at a time. Let’s dispose of two right from the start: denial and bargaining….I have Multiple Sclerosis and I am not getting out of it. Fine ok whatever.

Depression is something that I have always dealt with in some degree I will deal with that also in another post. See, depression and unstable mood are symptoms of MS. So I am still sorting out where it belongs in head. 

So that leaves anger and acceptance. I am eyebrows deep in anger today. I just want to slam something. Is this the best we can do? Am I as good as I am going get? Don’t we as MS patients deserve the awareness, the limelight, if you will, of any other disease that is “incurable” . People need to understand what MS is, how it makes you feel. How, just because I look fine on the outside, doesn’t mean that I don’t feel like shit on the inside. I don’t want sympathy, I don’t want special treatment. I want someone to get it! I want someone to say ” I can’t possible know what you are going through, but I am with you”. I am not talking about my family and close friends, they have been angels to me. It’s the people who I talk to randomly who have no clue. It’s not their fault, but I get frustrated.

 The things that set me off today may seem so stupid. I was freezing this afternoon and I wanted to take a hot shower and I couldn’t. So I get in the shower, freeze my ass off and step out of the shower in a seriously foul mood. It was time for my copaxone injection and I didn’t want to do it. I did, grudgingly, and took my vitamin d. On the way to work, the traffic was nuts so I was  stringing together obscenities that would rival Ralphie’s Dad. I was late so I got to hear my 3pm alarm go off and I screamed at my phone. I got to work, got my medicine out of my locker but couldn’t open it. I had to ask for help from a friend. And that was when I decided it was time to shelve the anger or I was going to unload on some poor bystander. So what’s my problem? I hurt. I am typing this with MS fingers…I can’t feel them. My head is tingling, like creepie crawlies up my scalp. My brain is PUDDING! I couldn’t do simple math this afternoon and was nearly in tears. I can’t sleep and when I do, I have nightmares. I am over it! I don’t want this, but it’s not going anywhere…ever. So yeah, I am pretty pissed off right now.

Acceptance…well as a wise woman once said “acceptance is a mother f—-er”. Not there yet

AAAARRRRGGGGHHH.  So this is when I am going to ramble on and on about how I want to talk about my symptoms and how they have effected (affected?) each individual system of my body, but can’t seem to get he words in order.  That is where I am at though. I have the thoughts but I don’t have the words. This is actually a symptom! So instead of  being able to wax poetic I am stuck going all “uh t-uh…gimme a second. Duh…oh fuck it never mind” I am frustrated as all get out. But demyelination be damned I will write what I want…just maybe not exactly when I want to.

{May 24, 2012}   Oh hey….there she is

I have not forgotten you, my bloggy buddies. I have felt a bit under the weather, hence the lack of blog updates. I will give you hint on the next big post though, I am working on the course of my MS in regards to symptoms, when I really first noticed them and I have mulled over the factors of why I got MS in the first place. So I have all this info tumbling around in my brain, waiting for it to land so I can yell Yahtzee! and I can get on with it!

Keep on trucking people, I shall return 😉

One of the little know and most seriously sucky symptoms of MS is my severe heat intolerance. I can go from fine, to burning with all the fires of hell in a matter of seconds. Last week, while at open house for my daughters I went into a full on bitch of a panic attack, we were waiting outside for the girls and G-parents to catch up, and I lost it. I was a little tea-pot and I was shouting. I could not think straight, couldn’t talk to people, my heart was racing and I was fighting tears. I was over-heated. I learned that day to always carry icy cold drinks, find the shade, and don’t push myself to that brink. So we purchased more fans, I sleep underneath one every night, I have frozen water bottles in the freezer, ready to go when I am heading out the door, and a smoothie habit that may require an intervention. I have started swimming, which such a great way to keep my core temperature down, however sometimes my head is too sensitive and I can’t stand the cold water on it…..seriously!!  The other and most important bit of melt-down prevention that I have learned is to speak up. I can feel when I am losing it, my legs become jello and my brain turns into cream of wheat. So I ask for a cold drink, find a place to sit and breathe. It passes relatively quick, but it can seem like an eternity when you are trying to keep yourself from crossing to the dark side. I have been blessed to be surrounded by people, who while they admit they don’t understand, but who are willing and ready to hep me with what ever obstacle I may be trying to navigate. And there have been many, and I have no doubt there are more to come. Multiple Sclerosis has been a learning experience and will continue to be until we cure it. The best I can do is research, talk to other patients and family members, take my meds and hope to stay ahead of the symptom curve.

And another Conga Lime smoothie from Juice it Up wouldn’t hurt either.

 Today, fair readers, we are deviating from my usual rants and insights of my life with Multiple Sclerosis and exploring the boys of movies and television that make me smile. I would like to state for the record that this particular entry was my husband’s idea. You see, I have been on a Supernatural kick, and those who know me know how much I love Hawaii 5-0. Then  the whole archer thing….we will analyze that as well. So hubby says to me “you should write about boys, it would make you happy” He is so right!

So lets start with Supernatural. This is such a fun and well written show. Hubby and I missed the boat on it when it first came out, but thanks to the advent of netflix we are just a season and a half from caught up. The characters Sam (Jared Padalecki) really hot….. and Dean (Jensen Ackles) hot too…. are the  demon hunting Winchester brothers, hijinks, as you may guess, ensue. Heres the thing both characters are so fantastic, Sam, strong silent type, with crazy pecs and awesome hair a brooding and logical demeanor yet has  a dry and sometime scathing sense of humor, Dean is smart ass funny and tirelessly devoted to his brother, has a smirky smile and mischievous gleam in his eyes. Every episode  I am all I love Sam (I think he is my fave) then not too long after that I change and love Dean. The truth is I would like to be the middle of a Winchester Sandwich!

The sole reason I started watching Hawaii 5-0 was due to the casting of Scott Caan. Or as he better known in my family as “SCOTTTY CAAAN” . To me the show is pure candy.Gladly the show took off, has done well and has a great supporting cast , predictable plots, but hell you can’t have everything. These factors have ensured I get a weekly Scott Caan fix. I used to have to go to movies like Boiler Room, Ocean’s  Eleven ( yes there are way worse things), or American Outlaws ( Colin Farell is in that one, so not really a burden).  Why does Scott Caan make me so happy? Not sure….actaully I am sure. Swagger, muscle,humor, tends to wear shirts that are a hair too tight. Seriously watch any episode..Danno’s buttons are hanging by a thread. I like his squinty eyed smile. I am always amused by the parts that he plays. But even more than that, it’s sort of the inside thing that I share with my sister, every time we yell randomly “SCOTTTY CAAAN” I get a rush of happiness and connectivity that is priceless to me.

Legolas, Green Arrow, Robin Hood, Hawkeye…. what is it about a guy with a bow and arrow? Is it the cool confidence of fighting from a far, the sort of ” haha you are dead and I barely mussed my hair’? perhaps it is something more primal, something about the skill of the weapon, the precise aim needed, the lack of the “BOOM” that typically follows the blast from a gun. Anyway you cut it I am a sucker for an archer, hell one of my favorite cards to pay in Magic the Gathering (if you didn’t know what I nerd I am…I am a big one) is “Elvish Archers” .It just so happens that the guys with the arrows are typically hot.  It’s just one of my things. 

List of random yumminess, in no particular order. Channing Tatum, Bradley Cooper, the guy who played Desmond on Lost. The truth is this list can go on and on. So lets keep it going respond with your favorites and I can make it a sticky link…lets have fun with it. BTW I don’t care, boys girls wildlife…if it makes you happy I am tickled pink!!

Me and my insomnia were at odds last night. I wanted to sleep, insomnia, not to be outdone said” you will not have a moment’s rest. I will allow you to doze for a bit and then wake you up and keep ou up long enough to get really pissed off”

So what’s a girl to do? Well first she takes her meds and lies down with a satisfied grin thinking she has won this battle. Then she gets her phone and plays all of her tuns in “Words with Friends”. After that its Angry Birds until she is the only one left who is angry.  She then decided to get serious and puts on the netfilx for Downton Abbey re-reruns.For the record I love love love Downton Abbey. She figures the soothing soundtrack and quiet dialogue would put the proverbial nail in her sleep “coffin” . But not tonight friends, the insomnia is fighting both the Ambien and the Crawleys.

 I put my phone away and tried to force sleep to come. I chose a variation of the time-honored tradition of counting sheep. I started counting electric zaps through my body. These were not terribly painful but I could feel them plainly and without any question about what they were. Some where around 200 I gave up turned over, closed my eyes, and prayed. Ran though what seemed like an endless Rosary in my mind. Praying for sleep to come, praying to get through another day without too much pain or disability. Praying for my daughters, that they wont have to go through this. Praying for my hubby, who has been an angel through this whole ordeal, while fighting pain of his own. Praying that somehow someday there will be an easier way.

 I found peace, and calm and I slept.

{May 17, 2012}   Not too sure

Ok Day three back at the grind. Kids, I do not know if I am going to make it. I can feel already I am not going to have a good day. My arm is weak and am so tired. My body shooting off electric current like crazy. It like a little imp is following me around and zapping with a taser cranked to 11. I do not know how I am going to stay on my feet.

But my first day back was rough but fulfilling. I took care of a lady who I have taken care of for years, she fell, she broke her hip. She was so happy to see me and I her. We talked about how she got in her position and I told her about my MS. She said to me that I always make feel better, that I have a kind heart and gleam in my eye. She said she loves me. That was the best reason for me to be back at work, affirmation that maybe I do make a difference. I had to examine how I feel about my disease. Am I worse off or better off than that sweet lady? Can you compare it? I don’t know yet. I do know that any day I am above ground and bitching (an old quote from a great security guard) is a good day. But on some days I would prefer being underground and pleasantly silent.  I am still working it out.

Lunch time then shower and off to work again! By the way GRATS!!! to my 6yr old on her perfect attendance. She is a warrior 🙂

{May 16, 2012}   To my Physical Therapist

You sweet smart and dare I say psychic man. Who, as I left  therapy session this past monday states, “Call us Wednesday if you are to beat after your first day back at work” It’s as if he knew….. With that I am going to put down the cool whip and go back to bed.

I am the oddest type of person. I am so good at putting on the happy face and being an obnoxious Pollyanna type who sees the good in everything. But damn it if underneath my sugary candy coating if there isn’t the most fatalistic and “screw it all who cares anyway” grumpypants . I start back to work today, yippee?  Maybe…. I miss my friends, I miss the job. I can literally say I have spent half of my life in an x-ray department. I do love what I do. Here is the thing. my body is going to fail me. And no I am not having a panick attack anymore. No I am no scared of it anymore.  I know I have to test the limits of what my MS will let me do. I also know there is only one way to  find out. So I am going back. With hands that I can hardly feel, with a left arm that is a ticking time bomb….I never know when its going to disappear. I will be exhausted, I will be in pain. By the end of the night I will be in tears. But I will go with a smile and kind word of thanks for everyone who has sent up prayers and good thoughts for me. I will be upbeat, the cheerleader that is expected of me. But realize, when you ask how I am and I say I am great I feel fine…people, I am lying.

et cetera
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