MS.. fantasizing and facing my reality

I had a wonderful time earlier today, chatting on Facebook with my best friend Krissy, who lives in Iceland.  She was, of course, terribly concerned about me with all the things that have been happening in my life as of late and wished she could be closer so she could be of some help.  What she doesn't seem to realize is that just knowing she is my best friend, no matter what, and has never treated me different because of the MS is priceless.  She sees me for who I am and not as a disabled woman, even though she is extremely aware of the problems the MS has caused.

I was fortunate to visit Krissy for five weeks in 1993, before going to Bolivia with my brothers, and had a wonderful time with her, her husband and her two boys, Ingimar and Daniel (she now has a third son, Ísak).  OK, so her husband and I didn't exactly hit it off too well but being with Krissy more than made up for it!

Me and Krissy at her mom's house, May 1993

While Krissy and I were chatting today, she was a bit sad and said "lets just dig deep and try to remember something that matters" and I responded "so lets pretend we're both perfectly fine and imagine what we would do."  I've often thought of this but never put it into words with her because it seemed rather futile but hell, why not?  Once in a while, I don't see any harm in fantasizing things one would like to be able to do, no matter how unrealistic.  So this is what we did, although it's far more difficult for me to make things come true when I'm trapped in this body.

First of all, Krissy and I have been best friends since the 7th grade and this deserves a photograph, right?  OK, so here it is!  She may kill me for posting this pic but I'm willing to risk it since I know she loves me.. please remember that when you get upset with me, Krissy!

Krissy and me, Halloween 1981

Now back to the fantasy we were talking about earlier today.  If I'm going to take the time fantasize, I'm going all the way!  I didn't have too much time to go into details as I needed to take Emmi Sue to the vet for a quick appointment, but we had the chance to get into it at least a little bit.  The first thing I think of when I imagine "perfection" for myself is my weight.  Right off the bat, I subtract many, MANY pounds off my small boned frame so am able to fit into outfits I have never been able to wear.

As much as I hate wearing red, it's one of the best colors on me so I imagined myself in a short, tight red dress and ridiculously high heels since I can't really wear those in reality.  I'm sure I would have paired the heels with some sexy fishnet thigh highs to make the outfit complete.  Krissy opted for more casual attire, as she chose to wear a thin grey sweater with jewels on the shoulders and a swoop neck with light blue skinny jeans and closed pumps.  I think she would have looked incredibly hot but that's the way I feel she looks all the time!

I would probably choose to wear something like this, minus the feather

After I was mentally dressed, I saw myself dancing.  I have been told, on a few occasions, that I have very good rhythm but the unfortunate part is that I never had the opportunity to dance.  It really wasn't until I was in Cochabamba in 1993 that I started moving my body to the rhythm and beat of Bolivian music and it felt wonderful!  It was as if I finally found music that spoke to my mind and body and allowed me to move, even if only in the chair in which I had chosen to sit.  So as Krissy and I were chatting, a thought came to me.  With the attitude I have now, minus the MS, would I be the fantastic dancer I believe I could be?  I know there is no way to know this so I'll try not to ponder it too much.

There are other thoughts that have gone through my mind over the years, such as if I would be as confident as I am today if I didn't have MS.  This disease made me confident in myself to a different degree as I had to swallow my pride many times and basically say "fuck it" repeatedly when I was faced with nearly impossible challenges, that I became strong in ways I had never imagined.  And the thing is, I like who I am.  I really do.  If I could be who I am without the MS, I would love it.. but I don't think that would be humanly possible.  I needed to go through all the pain to get to where I am today.  I'm not saying I'm thankful I have MS because I'm not.  But at the same time, I don't know who I would be WITHOUT this disease.  It has been with me for half my life so it is part of who I am.  Part of my identity IS my multiple sclerosis.  I hate it.  I despise it.  I want to be eternally in remission.  But I don't know who I am without it.  It makes my mom cry when I say such things to her, but it's mostly because she cannot understand and never will.  She had breast cancer, a mastectomy, the cancer was gone.. end of story.  There is no "gone" for me.  Mine is forever.  It's like a bad marriage where there is no chance of divorce or even a separation.  Or maybe it's more like conjoined twins who can't live without the other as vital organs are inside her half of "our" body.  I can compare it to many different things but in the end, I have MS until the day I die and that's just the way it is.  I accepted this a long time ago and I'm even OK with it.  I don't LIKE it, but that's alright.  I'm not crazy about my very flat butt either but I've made my peace with that aspect of me, too.

MS.. another day but far more hopeful

I'm the type of person who has no problem admitting to her faults or shortcomings, doesn't mind a heated discussion from time to time, enjoys a lot of affection, tries to find humor in most situations, loves to be right but admits to being wrong.. but there are times when I absolutely hate being right.  Today was one of those days.

Emmi Sue's veterinarian called and informed me that her blood sugar was, indeed, quite elevated.  It was at 400 and she needs to be put on 1 unit Lantus (insulin) twice daily.  From the way Emmi Sue had been behaving the last few weeks, I knew her sugar had been high so it came as no surprise.  This time, however, I'm taking her in to have a few areas shaved to make it a little bit easier for me to make sure the insulin goes into her body and does not get lost in her fur.  Yay, another fun afternoon excursion for my baby.

As for me, my MS is making my life very difficult.  I had called my neurologist yesterday, mostly just to let him know what was happening with the MS and to let him (and my nurse) know that I would not be willing to go on any sort of steroid treatments, since that is what is usually prescribed.  Oral Prednisone is that made me diabetic in the first place and I.V. SoluMedrol isn't quite as bad but still does a number on my diabetes and does not usually do me much good, so I choose to not receive this medication anymore.  I see no point to it.  What surprised me was when Melissa, my neurologist's nurse, called today to inform me that he had ordered MRI's to see what was going on with my MS.  I really had not been expecting anything to be done, but damn, this is a good thing.  I would like to know what is happening, too.  So I'm scheduled for MRI's Monday at 6pm, with and without contrast.  Then we'll know the story of what is going on with the MS.

I was a bit angry yesterday in my writing and I know I cursed much more than usual and if I offended anyone who read my post, I do apologize.  I never wish to offend anyone as I am truly flattered and humbled in knowing I have readers whom I have never met who follow my journey as I share my life in this blog.  I am much less angry today as life just is what it is and MS happens to a part of my existence and I have had to make room for it.  We all have parts of our lives which we wish we didn't have to deal with and this is mine.  So now I am hopeful that my doctor will see what is going on with this MS in my brain and will either come up with a better game plan or stick with what we are doing, which is continuing with the Tysabri infusions and hoping for the best.

MS.. here we go again

As much as I hate it, today is the day.  One of the most dreaded days for me.  A day of my life I could easily do without.  I hate to even say what it is since it will make it feel that much more real.  Come on, Lucy!  Just take a deep breath and face this!  OK, here it is.  Today is the first day of a full-fledged multiple sclerosis exacerbation for 2012, or flare, as it is also called.

It should come as no surprise that my MS is attacking me at this time.  I've felt many signs of this coming on in recent weeks but was hoping it would fade away.  Nope, no such luck.  I even recall having a dream a few weeks ago where I had almost no use of my right leg and needed my dad's old walker from when he had had a hip replacement (back in 1997).  Now I believe I may actually need that damn walker since my quad cane won't be enough to get me across most rooms.  Damn!  And forget about driving.  Shit, there goes the independence I love so much but I'd rather be safe and keep others safe from harm than risk anyone's life because of my need to do things for myself.  This is one aspect of myself of which I am very proud.  When it comes to being responsible with driving, no one can EVER say I've driven while under the influence of MS!  If the MS is active (to my knowledge), I am not behind the wheel.

Over the last few weeks, I've noticed significant weakness in my right hand, mostly in not being able to sign my name or write on my calendar (s) and dropping things repeatedly.  Then there's the non-stop excruciating pain in my lower back, pelvis and hips, but more so on the right side.  I had cut my anti-spasm/pain pills (Baclofen) in half a few weeks ago but have been taking so many halves lately that I am up to full dosages or more.  Ugh, and how can I forget how much I hurt after cleaning the litter box?  My right thigh nearly gives out every single time and I wish I could toilet train my girls!  I spent one morning crying after cleaning out the damn box.  It was absolutely horrible.  But yet I smile.. or try to, anyway.  Now I will have to work at the words I say so much, to smile through the pain and not let it dictate my life.  FUCK!

Last night, as I made my way to the kitchen to get a bottle of water from the fridge, my right leg was no longer responding too well and almost fell twice on the very short journey.  My first reaction, as it always is, was to be angry at myself and my body for betraying me yet again.  Anger, sadness, self-pity.. it all kicked in almost simultaneously, even after living with this damn disease for 21 years.  Each time MS rears its ugly head, re-acceptance needs to take place and I'm damn tired of having to go through the fucking steps over and over again.  I'm getting too old for this crap!

Speaking of crap, did I mention that I haven't had a "movement" in days?  Well, hell.. if I can't feel much of my body and it's not responding to my commands as it should, how the heck would I be able to go?  My brain can't find my legs, which shouldn't be too difficult since I can at least look down and "help" my mind with the commands I'm sending, but when it comes to going to the bathroom.. umm.. I can't see what it has to do!  It's so demeaning and frustrating and is probably yet another reason why my back and pelvis are hurting so damn much.  Today is just a sucky-ass day and yet I'm hopeful that it will get better.. I think?  At least tomorrow Dorraine will be here to take me to the chiropractor and the store to pick a few things up to hold me through for a few days.

I know this is not the end of the world and should get better soon even though those of us with MS know each time our MS kicks in, we have no idea how long it will take before our lives get back to normal.. or if we will have to find a new "normal" to learn to survive in again.

Emmi Sue is perfect at the vet :)

Emmi Sue's vet appointment went very well today and she behaved like an angel!  I'm so proud of her.  Going to the veterinarian is a very stressful time for her and I did my best to make it as easy as I could.

Each Tuesday and Thursday, my friend Dorraine comes to my home to help with light housekeeping duties (she works for a company called Help At Home) so she was kind enough to accompany Emmi Sue and I to her appointment.  Emmi Sue loves Dorraine so much!  Actually, all my girls are very fond of her and enjoy jumping on her lap and receiving as much attention as she is willing to give, which is quite a damn bit!

When the three of us girls arrived at the vet's office, I'm sure Emmi Sue realized where we were.  I took her out of the pet carrier and held her in my arms, hoping to relax her as much as possible, as Dorraine and I spoke to her and stroked her fur gently.  By the time the veterinarian came to take her to the back room for her blood work, Emmi Sue seemed more mellow than other times I had brought her so I was hopeful that the vet would have no trouble with her. Thank goodness I was right!

My sweet little Emmi Sue's profile

When Emmi Sue's doctor brought her back to me, she said my baby behaved very well and only tried to scratch her a little bit when she was checking her ears.  As has happened in the past, Emmi Sue has a sort of yeast growing in both ears, which means I need to apply medicine in both of them daily after wiping them with a clean cotton ball.  No problem.. I've done this before.  Her blood work results will be in by Thursday and I'll know her blood sugar levels and I can go from there.  All in all, I'm pleased with the appointment and I'm thrilled at how well my little girl behaved.  Now I know to rock her in my arms first and she does much better.

Once we were home, it was Catnip Day again!  How could I not give my sweet Emmi Sue (and her sisters) catnip after the hard day she had just had?  It was the least I could do!  I love you, Emmi Sue.. always and forever and even more than that.  You are my girl.  You will always be my FIRST girl and no one will ever take that from you.  Besitos, mi amorcito.  No will ever love you as much as me.. Love, your Mommy *kiss*

Chiro and Vet and Curls.. oh my!

After a little over two weeks without seeing my chiropractor, I can safely say I've been cracked and adjusted yet I'm still in pain!  I guess I won't let quite as much time go by without seeing my chiro anymore.  My right hip is in agony.  Next visit is Thursday and I know I will need it.

I'm not looking forward to tomorrow.  Emmi Sue has her yearly wellness exam but I already know her blood sugar is elevated (as it was almost two years ago), so I'll be giving her insulin a few times each day.  Giving her insulin isn't much of a problem for me but having the veterinarian check her blood sugar is quite an ordeal for my baby.  When I made the appointment for her, the vet commented that Emmi Sue is very "feisty," but I knew she meant that my kitty gets mean or bitchy.  The thing is that Emmi Sue is anything but mean with humans except when she feels threatened or is frightened, which is how she feels at the vet's office.  The vet mentioned she may need to "slightly sedate" her, but I'm not too keen on the idea of this since Emmi Sue has never had this done before.  At her age, what if she has a reaction to the sedation?  This worries me greatly as I would not have a problem holding her while she or her assistant poke Emmi Sue to get enough blood to see what her glucose level is.  Should be an interesting afternoon!

Now my curls.. ahh, my curls!  I am LOVING my hair again and I'm so glad.  I would give almost anything to go back a few months and not have cut my hair but instead go to Tango Salon and have Stephanie work on my curls so I could be that much happier.  But at least now it will grow back the way I like it to be.  Live and learn, right?  I need to learn to NOT break out the scissors as a first resort as my friend Mike keeps telling me!  No more scissors, no more scissors!  Mike will be so happy when he sees my hair grow out and me NOT cutting it.

Very short post tonight as tomorrow will be how it went with my sweet Emmi Sue at the veterinarian's office.  My baby, I love her so much!  If her sugar is as high as it was in 2010, I know how badly her little body is hurting and I want nothing more than to take the pain away.  Tomorrow, mi angelito.. tomorrow Mommy will make it all better.