MS.. handling changes in my body

Being alone every single day gives me a lot of time to think, and perhaps over think, many aspects of my life.  I realize I have said this before but it helps me gain a deep perspective on the direction my life is headed, or could be heading in the future.

At this moment, I am clearly having an MS relapse, even if it doesn't show up in the brain MRI's I had taken a month or so back.  I can feel it in my body so there is no denying it.  Perhaps when I have the spinal MRI's taken in early June the evidence will be there for the neurologist to see, but it doesn't change the reality of what has been occurring for quite a while now.  The MS is kicking my butt in many ways.

Apart from this exacerbation, my body has been changing over the last few years.  I'm not sure if it's the MS damaging me or if my body is aging too rapidly or a combination of both.  All I know is that two years ago when my dear aunts were here for my 41st birthday, I was standing relatively straight up with pain in my hips but nowhere near as intense as it is now.  Knowing my reality is shifting isn't easy to accept, but it's to be expected after 21 years with a chronic, debilitating disease.  There are things I need to reevaluate or relearn in different ways, so my body doesn't ache as much since the simplest of tasks now bring almost unbearable pain.

I spoke with my mom about this tonight and mentioned that even the thought of cooking simple meals, such as macaroni and cheese, are no longer possible for me.  Maybe I'll ask Dorraine to help me with this next week.  Perhaps she could make a few batches of mac and cheese for me and I'll separate portions into containers, freeze them and eat them at my leisure, rather than wonder from day to day what I'll be having for dinner.  Even making a tuna sandwich has become painful for me!  I think I'll need to ask her to prepare pretty much everything for me ahead of time so I can just go to the refrigerator and find ready-to-eat meals.  It's hard for me to do this, but it has become a necessity and I'm sure she won't mind.  Dorraine is someone I can confide in about anything and everything that is going on in my life and understands that the moment I feel better, I'll be back to taking care of the little things in my life again.  I just can't do it anymore.

The strange thing is, I'm not even feeling sad right now.  I've been able to take things in stride.. for the most part.  Sure, there are days when I feel more down than others but I still can't believe how well I've been handling the changes I've been going through lately.  Obviously, I hope this doesn't last too long and I can, at least, get back to the life I had before my right leg stopped working well enough to drive my car. 

Two days worth of ramblings

I've been in a very positive, reflective mood all day and evening.  I have been posting all sorts of uplifting messages on both mine and pages I am a member of on Facebook, hoping that others will read them and not think I am merely saying things for the sake of it but because I truly feel the way I present myself.  I also decided to make a change in my life by taking someone off my "friends list" on Facebook.  I should have done this a few months ago and truthfully only accepted his friendship because I felt he needed to have me on his list after I broke up with him earlier this year.  Things have felt awkward and strange as I've never felt comfortable keeping him in my life.  His pessimistic attitude brought me down as he was usually quite negative about life and I do my best not to feel this way.  It wasn't much of a friendship and I have moved on.  Maybe now, he will too.

I admit that I probably spend much of my time on Facebook but I've come to enjoy it very much.  I used to play many games but now that I've joined different pages, I do far more than just entertain myself with games.  The images I attach to my posts are from the pages I joined on Facebook and while on those pages, I share things about myself or simply leave a comment, sometimes inspiring and other times humorous.  Then again, maybe I'm not nearly as inspiring as I think I am!  I honestly don't know, but I do enjoy my time on that site.  I have made many friends from around the world and what I love so much is that it doesn't seem to matter to any of them that I am a disabled woman with MS.  They enjoy getting to know me simply because I am who I am.  Some are from MS pages, others from the Atheist pages and some friends are from various other areas of Facebook.

So I began this post last night and became very tired since my nighttime meds kicked in sooner than I had anticipated.  Not much has happened in the last twenty-four hours except that Mom and I spoke on the phone and although she couldn't tell from my voice, I was crying by the end of our conversation.  I try not to share all my aches and pains with my parents since they really cannot help me or do anything to ease the pain but for some reason, I told her how there have been many nights lately when I have been unable to even brush my teeth from the intense pain I feel when I'm bending over the bathroom sink.  My sink is extremely low (not sure why it was built this way) and it has become an incredibly difficult chore for me to do this very simple task.  I mean, we're talking about brushing my damn teeth!  I floss at least twice daily and use mouthwash when I get up from bed so many evenings, I've been rinsing with mouthwash, gargling and leaving it at that.  I don't let more than two nights go by without brushing, but yes, the pain has been THAT bad.  Sitting in front of the sink wouldn't help since I cannot reach the sink and my electric toothbrush tends to make me drool a bit, which is why I lean over the sink as much as I do.  Ugh.  Who would have thought that brushing would be such a difficult endeavor?  It was bad enough when I no longer had the strength to use a regular toothbrush and switched to a battery-operated one.  The clean I get from this toothbrush is superior to a manual brush so no matter what, I would never switch back.  The reason I had cried while talking to Mom wasn't because I was feeling sorry for myself but rather when I was explaining the pain, I teared up.  It's an all-consuming pain that begins in my right hip and just takes over every inch of my body until tears are streaming down my face.. from brushing my teeth!  OK, I'll stop talking about it now.

Indeed, life goes on and I try to suck all I can out of every day of the life I have.  I've wanted to include my favorite quote for quite some time and what better time than now?  So here it is.. words I try to live by.

"I went to the woods because I wished to live deliberately, to front only the essential facts of life, and see if I could not learn what it had to teach, and not, when I came to die, discover that I had not lived."

--Henry David Thoreau

And there you have it.  Words that inspire me to not be afraid of the unknown.  Even having MS and not being able to do as much as I'd like, I still take chances and risk getting hurt rather than living "safe" and not at least attempting new things.  I don't want to get to the end of my life thinking I hadn't at least tried and not lived while I had the chance.  I just know that when my time to die comes, I know I have lived.. and isn't that what life is all about?

Urologist said WHAT?

The last few days have been filled with intense hip pain so I was relieved that I had an appointment with my friendly neighborhood chiropractor today. *smile* When the pain is not quite as bad, the relief I get from him tends to last up to four days while during my less-than-adequate-periods, I'm lucky if it lasts a day and a half.  Yet I'll take whatever relief he can give me and for however long it will last.  At least it's something.

After my chiropractor was my follow-up appointment with my urologist.  He needed to see me post kidney stone fiasco but as it turns out, it's very likely that I have NOT passed the painful stone.  WHAT??!!!  Since my trouble urinating has increased dramatically since the kidney stone incident on the last day of March, my urologist feels very strongly that I probably have yet to pass the stone so he has ordered x-rays of that area.  If the x-rays do not show anything, he may order CT scans.  If it shows that the stone is still in my body, I will have a choice to make.  Do I want to have it surgically removed or wait for it to pass on it's own?  Ugh.. what a decision to make!  But I think I already know what I will decide.  I prefer to not have surgery if at all possible and since I already know what that horrible pain is, I won't hesitate to call my parents the moment I feel it again.  I also have a bottle of the pain pills my E.R. doctor prescribed so I would take those the moment the pain kicks in and hope the stone passes quickly.  I am not looking forward to going through that again, but it looks like I may not have a choice.  Damn.

For the most part, though, I have to say that today turned out much better than I could have foreseen.  My parents drove to my home and I thought they would both accompany me to my appointments, but Dad chose to stay behind so he would have time to do some much needed yard work.  Mom also had a chiro appointment as she has been having pain on the back of her head and in her neck, so we headed that way and then to my urologist.  While we were waiting to be called back to the examination room, Mom and I had a chance to talk for a short while and what I love so much about my mother is how easy it is for me to open up to her and she with me.  She is absolutely one of my very best friends and I treasure her (and my dad!) with all my heart.

My parents are both Catholic, although they tend to lean more towards Christianity than straight Catholic doctrine, so they are definitely more open minded than most Catholics I have known in my life.  When I share my thoughts and feelings on different topics, I try to choose the right words as to not offend them.  My Mom tends to listen and reflect on my words to get back to me at a later time as to how she felt.  She prefers to think before responding and I truly wish I reacted this way!  I'm more of an open-mouth-insert-foot type of person, which isn't a great way to be.  But today, everything was absolutely wonderful.  We talked, laughed, almost cried, shared and held hands for a bit before being called by the nurse.  It was a good day, even with that impending kidney stone lurking in the back of my mind.

Do things really happen for a reason?

I had no intention on writing tonight until I saw this image on a friend's page on Facebook and all sorts of thoughts went through my mind.

All my life, I've heard people say exactly what it says up above.. that everything happens for a reason.  But is this really true?  I don't think it is.  The comment I wrote on my friend's Facebook page was:  "I don't think everything happens for a reason.  Sometimes, life just sucks.  We somehow find a hidden meaning in it but there wasn't a 'reason' for it.  What is the reason for my having MS?  NONE.  Shit happens and I no longer analyze it.. and life is more peaceful this way.☺"  I wonder if people feel there is a meaning in everything that happens in life is based on religious beliefs, and this is where my thoughts are leaning.

How can anyone say they know, beyond a shadow of a doubt, that everything happens for a reason?  Is there some sort of scientific evidence to prove this point?  Yes, we cut our finger and we bleed.  It will happen as a direct result of the injury but that is not what is being said in the image.  Why do I have MS?  Why do many of you have MS?  Why did my mom have breast cancer and almost lose her life to it?  Why does my Jinger have hyperthyroidism?  There is no reason for these things except that sometimes, it's the luck of the draw.  It happens.  To try to find some sort of meaning for these things would be futile because reason does not exist for them.  I have MS, most likely, because of the part of the world in which I live and the same goes for my mom having breast cancer, although her taking birth control pills for as long as she took them did not make matters any better.

I often reflect on my life and how I have become a kinder, confident, more tolerant, more loving woman, yet at the same time angrier, impatient and somewhat more demanding since my MS diagnosis 21 years ago.  But to be fair, I was barely out of my teens when I was diagnosed so I don't know how I would have turned out without this illness.  I can only hope that I would have remained Agnostic and continued onto Atheism, but what would have been will always remain a mystery.  So does this mean I feel my MS happened for a reason?  That my life turned out better because of it?  NO!  The only good thing that has happened, that I do not believe would have occurred, is having my three little girls in my life.  That was the direct result of settling for someone because I was afraid to be alone or with my parents for the rest of my life.  I can also say that the home I have to this day is because I chose to marry the second husband and picked this house mostly for the love of my girls.  We can always reach and find a hidden reasons for everything, can't we?  And sometimes, to make my life a little easier, I prefer to think that because of my MS I have my wonderfully sweet kitties and they are the light of my life.  Deep inside, though, I know my MS happened because it just did.  It was random and I prefer that it hit me instead of afflicting one of my brothers or my parents.

I suppose the randomness of life is part of its charm, at least it is to me.  Once in a while, a butterfly may land on your nose or your finger just because it chose to do so.  Or a small child may smile at you or point a finger in your direction and break into giggles for absolutely no reason.  It's all a part of life and I take it as it comes.  There's no need to analyze everything that happens.  Sometimes, it just is what it is.  It's far from perfect but it's beautiful because each one of us has a story all our own.  I embrace life as it is with all its imperfections as we ourselves are quite imperfect.  But aren't we wonderful in spite of this?  Of course we are!  Imagine how annoying we would be if we were utterly perfect.  Ugh, I don't even want to think about it. Our charm lies in our imperfect personalities, quirks, habits and this is how I see life.  Far from perfect but wonderfully charming in all its splendor.

Two months of blogging! :)

Today marks two months since I began this blog.  Two months already?  I can't believe this much time has gone by and yet there are many things I have not touched on.

This is also one of my nephew's birthday.  My cousin Patty's middle son, Sergio, is 27 years old and THAT is unreal to me since the last time I saw him, he was just 11.  Ugh, how time flies.  He is now married and has a little girl of his own and his wife already had a daughter, so he is a father of two beautiful girls.  His younger brother turned 21 earlier this month (yeah, that makes me feel old!) so I've been missing my family like crazy lately.

If I were to ask my parents to send me to Bolivia at any time, they would do so without hesitation and take care of my three girls with as much love and care as possible.  But this is something I cannot do.  With my cats getting older and two of them on twice daily medications, leaving them for any significant amount of time is not an option I allow myself to have because they come first in my life.  I do not feel as if I am sacrificing my own happiness for them as they are my children, even if they are feline.  My biggest joy is seeing their little faces each day when I wake and hearing their sweet voices meowing and purring as I speak their names.  They are my world as much as I am theirs.

Substitute your kitties for "another person" and that's me!

Ahh, but when I see photographs of my nephew with his lovely family, I can't help but wish I could be there with my family to share in the closeness I once shared with all of them.  My cousin and her husband Pepe have three sons, Andres, Sergio and Oscar and I became very close to all of them during two vacations I spent in Cochabamba.  I stayed with their family for at least one month each time and they are the people I miss most of all.  The incredible love and understanding of this family is something everyone should experience at least once in their lives.  At that time, Pepe was a Jehovah's Witness while I was Agnostic and even so, he enjoyed my company very much.  While he was part of that belief system, many could not tolerate him for too long yet he and I had mutual respect for one another and didn't encounter any problems.  He even slipped one of his books explaining the path to salvation in my carry on bag the day I left without my knowing it.  This gave me a good laugh and cry when I saw it.

Oscar, Andres, Sergio and me.. 1996

Pepe, Valeria (Sergio's wife), Camila, Sergio, Estefania, Andres, Gabriel (Oscar's son), Oscar and Patty.. 2012

When I see how the family has grown, it makes me tear up but it also puts a huge smile on my face.  My "boys" are all doing well in life and remain close to their parents and to one another.  They never forget me and as long as life treats them well, what else could I want for them?

I long to hear their voices and spend time with my family and to get to know the newest members but I know this will not happen for many, many years.  And by the time my little girls are long gone, my health will probably not allow me to travel and I have made my peace with this.  I couldn't travel right now, even if I wanted to.. this much I know.  I guess being aware of my limitations helps my stress levels stay put much easier.