Saturday, April 7, 2012

MS.. weather changes hurt!

The changes in temperature and barometric pressure have been doing a number on how my body feels lately.  It seems almost silly to have issues this spring when the weather has been absolutely amazing!  Most winters bring my region temperatures well below the freezing point for weeks on end, with cold weather lasting well into spring most years.  This year, 2012, has been phenomenal.. yet having springlike temperatures with an occasion colder day or two in between has wreaked havoc on my body and for those who suffer from a variety of ailments.  With severe drops or rises in temperatures or weather patterns come changes in the barometer, which I learned a few years ago is what triggers the severe pain I feel in most of my body, particularly spasms and/or spasticity.  Spasticity is a word that is difficult for me to explain or even to find a decent definition for, but I'll do the best I can since it affects many of us with multiple sclerosis.

I went on Google to find the best description of spasticity and was rather amazed at what I read.  My memory is not the best so I guess I already knew what it meant but was in dire need of a refresher course in understanding something I live through every day of my life!  OK, so here is what it means and why it makes me laugh.  I owe my "kick-ass" calves to spasticity.  Hey, it had so be good for something, right?  I got all this information from, if anyone would like to go there for more info.

Spasticity is best understood as an increase in muscle tone.  While this may sound good to some of us who bemoan the flabbier parts of our bodies, what it really means is that the muscles do not relax as much or as easily as they should.  Because of this, spasticity affects movement (and is therefore considered a motor symptom, as opposed to a sensory symptom).

Spasticity tends to occur more often in the legs than in the arms.  It also tends to be asymmetrical, meaning it is worse or happens more often on one side of the body than the other.  There are several types of spasms that affect people with MS:

  • Extensor Spasms:  these happen when a limb, usually a leg, stiffens and the person is unable to bend the joint.  These cause the limb, usually a leg, to jerk away from the body.  It usually affects the quadriceps (the large muscles on the front thigh), causing the lower leg to straighten.
  • Flexor Spasms:  this type of spasm causes a limb to contract, or bend, toward the body.  This type of spasm almost always affects the legs, especially the hip flexors.
  • Clonus:  this is when muscles jerk or twitch repeatedly.  The most common forms of clonus is when a person's foot taps rapidly and repetitively on the floor or knee or ankle jerk repeatedly after stimulation (such as tapping at the joint), rather than the normal response of one tap or jerk.
  • Adductor Spasms:  these are more rare.  These spasms cause a person's legs to close together tightly, making it difficult to separate them.
  • Stiffness:  this can be thought of as mild spasticity.  While not as dramatic as some of the forms of spasms described above, when muscles are slow to relax, it can cause problems walking or using the hands and fingers to perform delicate movements.  In some cases, the stiffness may not pose a huge problem.  In other cases, the spasticity can cause problems with mobility or be painful enough to interfere with daily life.

Of the above types of spasms, I'm most plagued with clonus, stiffness, extensor and flexor spasms.  Geez, that almost covers all of them!  MS spasms are horribly uncomfortable and can be rather embarrassing, but I've found that the flexor spasms in my hips (and pelvis) are the most excruciating and require extra doses of Baclofen when I feel the spasms getting out of control, as is the case today.  It's no picnic when they are attacking my lower back either.  UGH!

Some days, I ask myself why I write in my blog and why I'm terribly disappointed in myself if I don't have enough energy to sit and write.  The answer is really quite simple.  I feel as if I'm finally doing something meaningful, helpful even, with my life since my MS diagnosis over 20 years ago.  I always meant to do something inspiring with my life but never knew how to go about doing it.  I'm sure there are better ways to give words of encouragement but I've found a method to reach people from around the world by writing my thoughts and feelings and personal experiences in a simple blog, hoping that I am able to help even one person on this roller coaster ride of life with MS.  Have I succeeded?  Yes, I believe I have to some extent.  If nothing else, I know I have reached a few people who are not afflicted with MS but are close friends of mine and can now understand a bit more of what my life has become.  Maybe others with loved ones with MS are reading my posts and learning to be kinder and more considerate, too.  I'm not sure, but that would be wonderful!  MS doesn't change who we are in our core.  It just alters how we need to view the world a bit since nothing is as easy as it once was.  I can no longer take anything for granted anymore as I may not be able to have enough energy to make a simple cup of coffee from one day to the next.  It's just a fact of life for me and I realize no one's life is guaranteed to be perfect every day, but it's a bit more obvious to a person who has a disability whether it be MS, rheumatoid arthritis, fibromyalgia or countless others.

Oh, I sure hope tomorrow will be a bit more pain-free than today has turned out.  As any of my friends know by now, I do not like taking too many pain pills and I'm near maxing out on my Baclofen for the day already.  But since I normally take less than half my recommended dosage, I won't let it bother me if I need to take a bit more than usual tonight.

Friday, April 6, 2012

Dealing with depression through the years

When I was a child, I was mostly happy.  I came from a stable, middle class family which included my parents, an older and younger brother, a dog and two parakeets.  Both my parents hailed from Bolivia, South America, but my brothers and I were born in Illinois, USA.  I had a good number of friends at school, with my best friend living across the street from our house for the last two years before the big move.

Moving to Bolivia at the age of 8 was an exciting experience, yet scary at the same time.  I met my grandparents, although my maternal grandmother had stayed with us when my younger brother was born, four years earlier.  I guess I did not remember her and the shock of how my grandparents behaved with their grandchildren was almost mind-blowing, compared to what my paternal grandma was like with us.  The funny thing is that both my grandmas are named Elsa, so we always differentiate them by calling them Abuelita (grandma in Spanish) Elsa de Bolivia or de Moline, depending on where that particular Abuelita lives.  And in my young mind, ALL grandmas were named Elsa!  That's just how it was.

I became close with a few of my cousins, particularly Petty (her nickname) and Patricia, as we were the same age.  It wasn't until the 4th grade, our second year in Cochabamba, that I began to make many friends and felt at home at school and knew life would be fine once again.  I stopped having dreams of the close friend I had left behind in the States and was moving on with my life.  I LOVED all the family we had, which I had never experienced while living in the USA, nor had I ever felt as accepted and taken care of everywhere we went.  The family I had (and still have) in Cochabamba was greatly nurturing and made every transition that much easier.
Ah, but life was not falling into place financially for my parents, no matter what they did.  Two years after moving to Bolivia, we came back to the States to start all over again.  This is when nothing went right for me.  Leaving Bolivia was difficult, although I had no idea how much it would impact me until school began a few weeks later when I entered the 5th grade.  My mom had stayed behind to finish selling off our belongings as we would need the money to purchase pretty much EVERYTHING to start a new life, so we stayed with my dad's older sister and her family in the meantime.  Talk about feeling out of place!  My aunt and uncle are kind, my two male cousins are nice and my Abuelita lived with them, but.. wow, this could never feel comfortable enough to even begin to resemble home to me, even if it was only for a short time.  I was miserable.  I'm aware that my dad, brothers and our dog were all miserable too, but I'm writing from my viewpoint, so please do not assume I am disregarding their feelings.

It wasn't until the 7th grade when I became friends with a girl who is my best friend to this day.  But how were we to know that at the time?  We were 11 years old and loved Rick Springfield!  Then she moved to Iceland the following year and I fell into a depression so deep that it resembled someone losing a loved one to a very sudden death.  And that's exactly what it felt like to me.  We were laughing one day and she was gone the next.  I never had a chance to say good-bye.  She was just gone.  From that day forward, including high school, I never became close to anyone.  I'm not sure if it was a conscious decision, but why would I want to go through that AGAIN?  I had a best friend, and then we moved.  I had many close friends, and then we moved.  I had the best friend EVER.. and then she was gone.  I was not about to go through that again.  And the depression was all-consuming.

In my life, Krissy's moving away was the trigger that set the depression off, even though I struggled with my temper and anger issues from a young age.  I do not "blame" her for it as it was not her decision to move and even if it had been her choice, it still would not have been her fault.  Things happen in life and we all react differently to the circumstances.  My mind could no longer handle one more loss so the way I dealt with it was by closing myself off from others, yet spewing much anger at my family any chance I got.  I was a complete mess but all my family saw was my anger and all people at school saw was that I was quiet and shy.  Shit, if only they knew what was really going on inside.

In my teens, I hated everything about myself.  From my weight, to my hair, to my name, to my large chest.. just everything.  My older brother didn't make matters better by realizing I was an easy target and constantly teasing me by saying I was fat, stupid and far too ugly to EVER interest a guy.  Worse still, my parents never saw this side of him.  All they saw was that he was an excellent student, did what they told him to do, "pretended" to be respectful.. the most damn perfect son in the world!  Basically, they were praising my tormentor while I was screaming inside to be seen.

I'm sure it's no shock when I admit that I was suicidal in my teen years and it continued into my 20's.  The biggest problem for me in my teens was that I knew I was depressed and sad that Krissy had moved away and was insecure about myself but were these the only reasons I was so broken up inside?  There had to be more and I had no idea what it was.  I honestly had no clue what it was that was killing me.  So when I was diagnosed with MS at the age of 21, I finally had a REASON to be depressed.  Yay!  Finally, I didn't need an excuse to be sad beyond belief.  Who wouldn't be sad to be diagnosed at such a young age?
Starring Rachel Griffiths as Hilary & Emily Watson as Jackie
When I was married the first time and had gotten out of the hospital from a terrible MS flare up (1998), a close friend of mine and I went to the movies to watch Hilary and Jackie, a film about cellist Jacqueline du Pré's life.  I had never heard of Jackie du Pré until reading about her in an MS magazine. I learned she had had multiple sclerosis and was eager to watch.  I felt the movie was very well made with a few exceptions.  Jackie has MS and from watching the film, it appears to progress from one day to the next.. and then she dies.  No dates or timeline are offered and leaves the viewer wondering how old she was at the time of diagnosis and how many years she lived with MS.  But this wasn't the biggest mystery to me.  It was Jackie's absolute lunatic behavior that confused me and I could not tie it into the story.  I felt it was just her personality, so it needed to be shown.  It wasn't until many years later, probably around 2007, when I finally figured it out.
the real Jacqueline du Pré
Jacqueline du Pré was not losing her mind because she was crazy.  Jacqueline du Pré had MS and this was why she behaved in a way that could only be defined as positively mad.  You see, it was when I came to terms that MS itself causes depression because of its location that I was able to accept that my first symptom was probably not optic neuritis, as I had been told, but it was depression.  It was the perfect explanation for the madness I had felt all my life but could now understand why it was there.  Ahh, I could finally breathe and stop blaming myself for being weak.. even though I knew mental illness was not my fault.  Yet now I felt somewhat vindicated in knowing my mental problems went far beyond the "normal" struggles of the mentally ill.  I have severe spikes in depression and anxiety when I have a flare up and it's not merely from being upset that I'm more disabled.  It's that my brain is no longer functioning as it should.

If a film were to be made of my life, it would be very much as Jackie du Pré's was, minus the cello.  She reached a point where she could no longer play her cello, no matter how desperately she wanted to create music.  A few years ago I realized I could no longer write poetry, no matter how desperately I tried to create works of art in words, as I once did.  That part of me died along the way and it was a huge loss to me.  I'm sure it would have been much harder had I been a famous writer, as she was a famous concert cellist, but it is still difficult to deal with, nonetheless.

I'm not sure what my point was when I began this post nor why it ended in writing about Jacqueline du Pré, but watching her life unfold before me impacted my life in many ways.  At first viewing, I was saddened but over the years and after watching it over and over again (and crying my eyes out every single time), it helped me understand my own illness.  There are many aspects of MS that are demeaning.  Many parts of it that should not be lived by anyone, yet we live it day in and day out.
Over the last few years, I've done a lot of growing up.  Until my late 30's, I barely liked myself, whereas now I can proudly say that I honestly love who I am.  I will probably always be overweight and that's fine.  It's not like I can exercise!  But I no longer place my self worth on my physical appearance, which has helped immensely.  Who I am does not lie in what I look like, but in who I am in my core.  I may have MS but my mind is always working and I do my best to listen to that little voice inside my head that (usually) leads in the right direction.  I still feel sad and depressed from time to time but I no longer allow it to define me.  I choose ME over any obstacle that comes my way, whether I'm being attacked on the inside or out.

I've decided to change the name of my blog from "MS, 3 cats and Atheism" to MS, 3 cats, depression and the joys of life. 

Thursday, April 5, 2012

MS.. you take a piece of me with you

As I sit here tonight and think about my day, the little I physically accomplished and how tremendously exhausted I feel, words to a song I liked by Paul Young in the 80's come to mind:
Every time you go away
You take a piece of me with you...
What exactly do I mean by that?  Well, I just mean that every time parts of my body go away because of the MS, it takes away something much bigger than just the sensation or movement or whatever part of me I lost.  I lost a piece of ME.. and I never know if I will get it back.  This is the biggest fear in having MS.  It's living with the constant thought of "what if how I feel today will be the way it will be for the rest of my life?"  And no matter how much anyone wants to console me (or any of us with MS), they truly cannot since it's impossible to predict the future in a disease that is completely unpredictable and is as individual as our fingerprints.

I suppose I am in a reflective sort of mood this evening where my mind goes in all directions and does not know where to stop for too long but I do know one thing, and this is that I am feeling a sort of longing for normalcy.  I'm not even completely sure what I mean by that statement either except that I'm tired of not being able to shave my legs each time I'm in the shower because I either can't bend enough or I'm afraid of falling, I'm so sick of not being able to go to the bathroom as most people do (and this will only get worse over time), I hate only being able to wear ugly shoes.. shit, OK I guess I'm feeling sorry for myself yet again and I do not like to feel this way.  I wasn't crying or feeling sad until I started writing but hey, that happens from time to time.
I'm actually getting used to having others drive me to my appointments, to the store or wherever I need to go and it's really not too big of a deal to me.. yet.  I have been unable to drive for a couple weeks and I know far too well that this could continue for months on end or longer, which I am not looking forward to, but it could happen.  My longest stretch was 11 months, which happened to me twice in my 20's, so it's not an impossible situation although that occurred when I lived at home with my parents and brother(s) which made it easier to get a ride when I needed to be somewhere.

I have regained my composure and am no longer feeling "oh, woe is me" anymore.. and thank goodness!  I highly dislike when I get that way.  Life just is what it is and it is what we make it.  I still prefer to be alone with my babies than in a relationship where I need to take his feelings into consideration at a time when my own needs are difficult to take care of as it is.  I find it extremely difficult to be selfish and find myself going all out to take care of my significant other, even if it means causing my MS to flare up in the process.  It is one of my best and absolute worst traits so I choose to put myself first and no longer worry about anyone ahead of myself or my little girls.  It's more than I can handle right now anyway.

Luckily, I have nothing coming up this week and only one appointment next week, which is my Tysabri infusion on Wednesday.  Yay!  This means I don't need to get dressed until next week.  I can wear one of my three robes each and every day until the middle of next week.. oh joy!  Putting on a bra takes so much out of me.  Seriously, it does.  And then next Friday, April 13th, it will be my 43rd birthday.  I can't believe I will be 43.  Ugh!  Where did all the time go and when will any of these years finally show up on my face?  Not that I want them to!  I rather enjoy looking younger than I am.

If you don't like what you see, only you can change it

I've had many thoughts spinning in my mind lately and I'm somewhat uncertain on how to approach writing about what is troubling me or even if I should.  My intention is not to hurt those in my life yet I have a knack for saying things the wrong way and doing the opposite of what I meant to do in voicing (or writing) my views.  But at the same time, I feel attacked when I point out negative aspects of peoples' lives when I mention these things out of concern, not meaning to be hurtful.  I am nowhere near perfect and believe me, I am extremely aware of this.  I am overweight, smoke and have no intention of quitting any time soon, I am stubborn, very opinionated and I am just me.

When I think of some people in my life, I just want to shake them and maybe rattle their brains a little so they'll "wake up" to see life isn't as bad as they make it out to be.  And if you really are going through a rough patch, talking about it sometimes helps rather than wallowing in your own sorrows or not seeking the help you need.  There's no shame in asking for help!  Oh, my goodness.. if I felt too ashamed to ask for help I wouldn't get a darned thing done in my life anymore.  Please, swallow your pride and do what is necessary to get ahead in life rather than drowning as you are.  I am your friend and I say this out of love, not anger.
Depression, anxiety, self-hatred.. all these things are caused by a chemical imbalance in your brain that do not define who any of us are.  It is a condition that can be regulated with the proper medication and psychiatric treatment or medication and speaking with a therapist.  Nothing is impossible as long as you wish to pursue healing.  You know what I've been through and how I cannot survive without taking an anti-depressant for the rest of my life.  Do you judge me for it?  Am I less of a person because of it?  NO!  And the same goes for you. Imagine the huge weight that could be lifted off your shoulders if you found the medication that worked perfectly for YOU.  It took me a long time before I was given the right one but in the meantime, I was on a few that still helped although not as well as what I'm taking now.  You are worth the effort.  You don't deserve the stress you've been under and for the years you've felt the world falling apart around you.  You deserve to feel true happiness and joy but you will never find it until you can accept yourself for the wonderful person you are.. and you truly are amazing.

Monday, April 2, 2012

MS.. so damn tired

After the horror of Saturday, yesterday was a relatively good day for me and was actually laughing and smiling when my parents came over for a short visit in the evening.  It was almost impossible to imagine the pain I had been in less than 24 hours earlier and just as quickly, it was gone.  Today, however, is a different story.

The "beauty" of multiple sclerosis is that when our bodies, and/or minds, go through any sort of trauma, the MS kicks into gear once again.. almost as if to remind us that "hey, I'm here and you still need to deal with me, too!"  Yeah, thanks MS.  As if I could ever forget you are there?!  So as I was laying in bed this morning and my sweet little Allie was snuggling close to me and rolling around, I tried to stroke her fur and I wasn't able to.  My right arm and hand felt completely uncoordinated and I accidentally smacked her on the nose, yet she didn't leave my side.  How do my girls understand so well that I'm not hurting them on purpose?  She looked up at me, rubbed her adorable little face against my arm and let me just lay there as I enjoyed the feel of her against my body.  My babies are truly my daily life savers.
My sweet baby Allie
I'm not sure if I will have a full fledged MS flare up after having a kidney stone or not but for now, I'm dealing with very weak hands and arms and extreme exhaustion from doing nothing.  Ahh, MS is such a wonderful demon to have on my side but such is life.  I know it could be worse but at this moment I just want to scream out loud "haven't I been through enough lately?!!"  I'm having a little bit of a pity party for myself but know I'll be over it soon since it does me absolutely no good at all to feel this way for any significant length of time.  I guess I'm just tired of being strong today.  I'm tired of needing to concentrate so much to simply sign my name or to write an appointment on my calendar(s).  Everything is such a damn struggle lately and I wish there was something I could do to make life easier, but I can't.  I'm lucky that my parents help me as much as they do and that Dorraine does as much as she does for me but there are things that I need to do for myself, such as bathe and give my girls their medications.  Even getting dressed drains me of the little energy I have these days.

I'm just so damn tired.

Sunday, April 1, 2012

I had a very bad night......

So yesterday turned out to be one of the worst evenings in my entire life, pain-wise, that is.  I was ready to write my blog entry on a completely different subject, which I fully intend to do at a later date, when I decided to have a light dinner.. and then it all began.

I was probably halfway through eating my Lean Cuisine entree when I felt I needed to use the bathroom and the way my body works is that when I have to go, I have to go NOW.  I went and after nothing much happened, I figured it was just another MS thing in that it was not allowing me to have a movement, so I was not concerned.  I returned to my meal and I was hit with stomach cramps again, so off to the bathroom I went.  This went on for a few hours only the pain became more and more intense and left me crying.. SCREAMING, actually.. for even as much as a fart, but nothing was happening.  And all the while, my kitties were outside the bathroom door meowing to let me know they cared and all I could do was yell at them to shut up.  Ugh.. the things we do without thinking!
The pain I was having was localized in my pelvis and hips, where I've been having most of my MS spasms for a few years now, so you can imagine the fear I felt that the MS was attacking me at full force in a way I had never imagined it could.  I was petrified beyond belief and finally decided to try to get some rest around 9pm but soon realized that laying down only brought worse pain to my aching hips.  Then I thought to myself that I hadn't been able to urinate most of the day so I searched for a catheter, since there was a time when I could not pee on my own.  Luckily I found one, although it had already been used a few years back.  At that point, I did not care!  I washed it thoroughly, applied K-Y jelly to it, stepped in the shower to make insertion easier and was able to empty my bladder much easier than I thought possible.  I was hoping this would take some of the pain away, but no such luck.  Fuck.

I found that the only less painful position to be in was sitting in my computer chair, so this is where I returned to and sat and cried.  The pain I felt was so excruciating that I was doubled over in my chair, drenched in sweat and tears.  I finally decided to call my parents around 10:45pm and I had already been wracked in pain since 6:30pm or so and it was only getting worse with each passing minute.  Being that my parents know me quite well and are fully aware that I'm not one to complain too much about pain and rarely tell them about it, they knew it was bad.  They came to my house as quickly as possible, during a dreadful thunderstorm that included hail, and took me to the emergency room.

Everyone who waited on me at the Trinity Hospital 7th Street Campus was amazing last night.  From the front desk staff to my nurse Tammy, to my E.R. Dr. Lemon.  OMG, I want to give all of you a million hugs!  It turns out that I was not having a major MS exacerbation.. I had a tiny little 5 millimeter kidney stone.  I could not believe the pain this tiny stone was causing me!  But thanks to Morphine and anti-nausea medication in an I.V., I wasn't feeling a thing within a few minutes.  Ahh, it felt good to only feel MS discomfort and not that damn stone.  Who would have thought I would celebrate having ONLY MS pain in my life?  Insanity, I tell ya!

I was prescribed an antibiotic, due to the old catheter I had used at home, along with Hydrocodone and an anti-nausea medication.  It seems I won't need to take anything but the antibiotic since I am no longer in pain and the stone probably passed when I used the bathroom early this afternoon.  The ordeal of last night is just a distant nightmare and all I can is thank goodness it's over!  If childbirth feels anything like what I went through last night, all I can say is that all of you ladies who have children are my HEROES and those who have more than one by choice were, most likely, on exceptionally good drugs at the time of labor because I hope to never EVER go through that pain again.  And many women get pregnant on purpose!  I admire your strength more than ever in my life and I already thought you were amazing.