Press 1 for English!

I really like my doctor.  He is the size of a linebacker, but very laid back and soft spoken.  He is not in a hurry and seems very interested in each of his patients.  The only problem I have with him is this: the English he speaks and the English I speak are two different animals!

I have 5 notebooks and some pamphlets he gave me explaining the different options I have for treatments.  The 5 notebooks are just that; pages and pages of medical terms that mean nothing to me.  Chances are, if I took the time to look them all up, I would not live that long, or forget where I started from and why I was looking.  As it is, I am looking online and trying to find “real people” who are taking these different things and telling how it is to do so.

The IV treatment I have had the last three days is called Solu-Medrol (methylprednisolone), better known as Steroid IV Infusion.  Why can’t they just say that? The choices I have for regular treatments are glatiramer acetate injection, interferon beta-1a, interferon beta-1b, mitoxantrone and natalizumab.  Now, I ask you, does that tell you anything?  Basically, they are injections, developed by different companies, given either daily, every other day or weekly, and have varying side effects.  Just give it to me in simple English and let me decide what I think I can deal with.

I know the medical profession spends a lot of time and money studying and learning all the terms and things they need to know to help us the best they can.  I appreciate that.  I think it would be helpful if I could get a copy of  “Medical Terminology for Dummies” so I would know what they are talking about.

If you come to my house for dinner, please don’t say pass the sodium chloride.  If you do, I probably won’t respond.  Please pass the salt will do just fine.

Put Another Log on the Fire

I was thinking about how some of us walk.  Actually, I was watching Miss Congeniality and thought about it.  I have never in my wildest dreams  considered that anyone, Michael Caine included, could whip me into shape and get me to look like Sandra Bullock does in that movie!  (Actually, I have never dreamed I could look as good as she does at any time!) 

So, I’m watching this and there is a line in it where Caine tells Bullock to “glide” when she walks.  She clumsily drags her feet along the sidewalk and he ends up showing her how to “glide”.  (If you haven’t seen the movie, it is very funny and well worth checking out if you want to lay back and enjoy a couple of hours!)

Sometimes it feels like I glide.  Usually it feels more like I sling a log along.  My right leg is dead probably 85% of the time.  It is like dragging a heavy log with you wherever you go.  It does not make for a “dainty” walk.  When the doctor asked me to walk across the floor, he told me I have a typical MS walk.  I don’t think it was a compliment on gracefulness!

Some days, the leg feels almost normal.  It is almost scarier when that happens.  You can’t really “trust” it and tend to walk as you do when it is numb.  Either way, you strain your back and walk awkwardly.  It makes me think of when Frankenstein’s monster started walking and threw his arms way out to balance.  It may not be that dramatic when you see it, but it feels like that.

I think we all would like to be in the “babe” or “hunk” category.  That is why cosmetics, clothes, gyms, plastic surgeons and such make so much money.  We all have the dream of being desirable and beautiful/handsome.

Most people are so much more attractive than they think they are.  I know it is naïve and old-fashioned to think that beauty is found within, but it IS true.  There are so many attractive looking people who are terribly ugly acting people.  If we hang on to that thought, maybe those of us who have no chance at being Sandra Bullock beautiful can be content…………………maybe! J

Get up and Flush!

Depression is a strange thing.  You can be going along just enjoying the day and boom………it hits you like a ton of bricks.  You aren’t really sure where it comes from or how to get rid of it; it just moves into your life for a while and tries to stay.

I have noticed that I get depressed more as my fatigue, walking and pain get worse.  Not that I haven’t had it before.  I think everyone, if they are honest, has had bouts with depression at some point in their lives.  We all hit those times when life seems just a little more than we can handle and we give in to periods of “pitiful little me”.

I try to read and keep up with all the news on MS that I can and one of the problems associated with the disease is depression.  It is hard not to be when you realize that your life is changing dramatically and there is no turning back.  It is not like gaining a few pounds, going on a diet, and reverting back to where you were.  There is no “diet” that will fix this.

In my mind, I have a filing cabinet.  In the cabinet are folders.  Each folder has a name or problem on it that I keep filed, such as trouble concentrating.  Every now and then, I sit down on my pity pot and pull out one of those folders.  I read it, study it, and really get into feeling sorry for myself.  Fortunately, it gets old quickly and I file it back, get off the pot, and flush all that pity down the drain.

For now, I can do that.  Some files take longer to “flush” than others and I don’t know how long I can just put them away at some point and let them go.  There may come a time when they get so overwhelming that I will need help to let them go.  I hope not, but don’t feel I am above doing so if necessary.

Until then, I prefer to have lilac days to blue ones and will flush as often as necessary!

Where is Neverland When You Need It?

Doctors are funny people.  They don’t seem to have a clue that some of the things they take for granted are serious to us patients.  I am sure that when you see illness and disease for a living, some things just get to be “old hat”.  I think they sometimes forget that the rest of us still get shocked and upset over their “norm”.

Take the matter of having Home Health come over and put an IV in my arm for three days.  This was told to me in a matter-of-fact type way with no expression other than calm.  I, on the other hand, nearly fell out of my chair.  Maybe that is ordinary, everyday type things to him, but to me, it is rather far out there!

Did I mention I HATE NEEDLES??!!!!!!!!  Sorry, I seem to be stuck on that…. Everything I am told lately has to do with needles.  There must be a better way!

I really want to be a good patient; not whining and complaining about the least little thing.  I think I have done well so far.  I have done the MRIs, spinal taps, reflex exam, etc and not complained.  I am a grown up lady who is supposed to take things as they come and keep a stiff upper lip.

Maybe I’m not doing as well as I thought I was.  I keep thinking that if I put things off long enough, I will wake up from this dream and things will be OK.  The little girl in me keeps hoping for the rainbows and happy endings.  Peter Pan could be just around the corner…………….

OK, I flushed.  Things are better and I will quit whining.  I still don’t like needles and will strive to find a better way of dealing with these treatments.  But I am also keeping my eyes open in case a little fairy dust drifts down from the ceiling…………..

Does 1 + 1 Still Equal 2??

I know most mothers can relate to the fact that we were “multitaskers” for many years before the word was ever thought of.  Between getting the kids where they needed to be, cleaning, cooking and often holding down a public job, we multitasked long before it was the popular thing to do.

Even at work, most of us were in jobs that doing just one thing at a time was not an option.  Most jobs involve having to divide your attention between a multitude of things, and not lose track of any of them.

My husband was in management most of his life.  He would make notes as things would come up that needed taken care of so he would not forget anything.  He still does this at home, as we have quite a few things to keep up with.  Many people who know us well often kid him about putting something down on his notes.

I find that as the MS progresses, my concentration is getting harder and harder to maintain.  Things that used to come easily to me, I have to struggle with.  I don’t even try to help with the checkbook now as simple math problems seem like rocket science some days. 

I, too, have always been fond of making lists, but now they seem overwhelming.  I can feel myself getting sweaty and anxious if there are more than a couple of things on the list, even if they are as simple as calling someone or checking email.

I was beginning to think that I was getting senile or early Alzheimer’s until learning more about MS symptoms.  I’m not sure knowing that confusion and difficulty with normal, everyday activities is a sign of MS is a good thing or bad.  Either way, some days are very difficult and hard to deal with.

I was always told that 1 + 1 equals 2.  Unfortunately, now, some days, 1 + 1 just equals two ones…………….

I Chose None of the Above!

So, I went to the doctor and he laid out some treatment plans.  One plan is a shot each day; one plan is a shot three times a week; one plan is a shot once a week.  Did I mention that I HATE SHOTS???!!!!!!!!!!! Anyway, I was given a ton of material to read over and told to call him back with my decision.

Have you ever been in one of those positions where you had to make a choice about something and none of the choices were ones you really wanted?  Each option has a disadvantage.  The once a day shot, of course, will eventually make you have bruises and sores all over your body.  He says people usually take them as follows: Monday, right leg; Tuesday, left leg; Wednesday, right side of belly; Thursday, left side of belly; Friday, right arm; Saturday, left arm; Sunday, in the back; then start over.  Somehow, that just does not appeal to me!

On the other hand, the other two options are larger doses and tend to make people sick a day or two after taking them.  Instead of being sore, you have a flu type reaction and lose a part of your week.  That doesn’t sound appealing either.

There is some light in the tunnel on down the road.  There is a pill in the works, and possibly a patch in the future.  I will definitely opt for one of those when I can.  It could always be worse and I am thankful that there are options and hope that the progress of the disease can be slowed.

Until then, I will hold my head up and take my shots………probably once a day, given by my husband.  If he gets to the point he enjoys it too much, I will write an ugly piece about him!  J

I Want to Know................. but Don’t Tell Me!

I go back to my neurologist today.  It always gives me a  bittersweet feeling to visit him.

I had another MRI and he will give me the latest update on how he feels my condition is progressing.  It is one of those things where you want to know, but really don’t.  Know what I mean?

I’ve had the MRIs, spinal taps, reflex tests, etc, and wonder what else they can come up with to see if they can gather any more knowledge about my individual condition.  It is a scary prospect.  If you have never had a spinal tap, I would not recommend it.  Having an MRI makes me think about being shut in a time capsule and wondering when they are going to bury it.  It is not overly pleasant either.

I guess, all in all, I have no reason to complain.  There are so many people who are going through things that I cannot imagine being able to deal with.  Although MS is a constantly changing, ongoing disease, it is much easier to deal with than many other diseases.  I am grateful for this.

I do not, in any way, consider myself strong and able to withstand great amounts of pain.  MS IS painful at times, often to the point of wondering if you will pass out.  But it is not usually a constantly painful condition that is unbearable.  For the most part, the pain comes and goes and you get a little break in between.  The uncertainty and fatigue is the worst and plays on your nerves and mental condition.  Most of us have to be strong minded and have a lot of back up support from family and friends.  I have this support and it makes all the difference in the world.

So, I guess I will go in today, listen to what he says, and take it with a grain of salt.  I will face what I need to with all the strength I can muster, and lean heavily on my sweet husband and friends.  I also know that God is forever with me and will carry me when I falter…………what more could I ask for??!!!!!!!! J

If you would chew your food up good you wouldn't choke!!

When I was young, I was really skinny, but had a ravenous appetite.  I ate all the time and was always looking forward to the next meal.  My grandmother was constantly asking the doctor to check me over.  She felt that anyone so little who ate so much must have worms!

Unfortunately, now that I am older, I can eat or not eat and don’t lose an ounce.  I must have used up all that energy and calorie burning gene when I was younger.

I noticed a few years ago that I have weeks where, no matter how much I chew my food, I want to get choked.   I can chew and chew, but when I swallow, it seems to be much bigger than my throat and won’t go down.  This, also, is an MS symptom.

I think one of the hardest things to get used to with MS is that you can’t get used to anything!  One thing may be a problem for a few months, clear up, and something else starts.   It is hard to adjust to an ever changing symptom pattern.

I do know this for sure………I can grind up my food in the blender, but if my throat does not want to swallow correctly, it doesn’t matter how pulverized the food is. 

I really would hate to know they put  “She choked to death on a chocolate chip cookie” on my tombstone, though!

You Wore WHAT to Church??!!!!!!!!!!

I remember getting so excited thinking that it was getting close to Easter and I would, hopefully, be getting a new dress to wear to church.  Easter was one of the few times, besides school starting, that new clothes were bought.  To me, it was far more exciting than thinking of Easter baskets and candy.

Over the past few years, I have thought long and hard about that idea.  My thoughts have changed dramatically on what one should and should not wear to church.  But even more than that, MS has played a major role in my outfit decisions.

On two different occsions I have been walking down the hall at church, fell, and looked around to see if anyone besides my husband was seeing my underwear!  After that second fall, I have re-thought my position on suitable attire for church.

Most people, especially those of us over the 40ish age range, have been brought up to believe that one should dress in their "Sunday best" to attend church.  This usually includes a man wearing a suit and tie and a woman wearing a dress, heels and hose.  Most younger people have moved away from that line of thought and settled for the man wearing slacks and a shirt and the woman often wearing a pant suit type outfit without the necessity of heels.

I know that my grandmother would roll over in her grave, but I have worn dress jeans and dressy shirt to church on several occasions.  Since it is a small church with a variety in ages of people, no one has fainted when I walked in or given me hateful glances.  I am also not the only one who dresses in a casual manner, so am thankful that I don't stand out on that front.

I decided on this post today because so many people judge things and have no idea the real reason behind why something is done a particular way.  I would LOVE to wear fancy dresses and heels to church.  The problem is, I do not want to show my underwear to whoever is walking by if I fall.  The jeans/slacks seem to be the best solution to that problem.

Besides, it is not WHAT I wear, but WHY I am there that counts................:)

Boys are like that........yeah they are!!!!!!!

A friend emailed me about her youngest son, who just turned two.  It seems she found him in the bathroom getting ready to put his head in the toilet.  Pulling him away from it, she asked him why he wanted to do that.  "Duke (their dog) does it," he told her innocently.  Her question now is, will her son start going outside and hiking his leg on the tree, "cause Duke does it" ??!

Most of us seem to do things, even things we don't particularly want to, because someone else does it that we admire or want to please.  Thinking back on some of the really stupid things I have done falls into that category.  It was not that I really wanted to do it, I just thought that someone would approve of me more if I did.  That is one place where getting older comes in handy.......you quit worrying about what someone else thinks!

Which brings me to the point of this blog..........as MS progresses, or just acts up on certain days, those of us who have it have had to decide to quit worrying about what someone else thinks or does.  I KNOW I'm the person that some people turn around and look at when walking in the mall.  I have learned to just smile and go on.  I remember a little girl stopping and asking me if I had hurt my leg.  I told her no, that I have a disease that causes me to drag my leg sometimes.  She asked me what it was.  I told her MS.  She said, "Oh.  Is that like bruises?  I have some of those," and she showed me a bruise on her leg. 

Maybe if we took more time in sharing our ups and downs, rather than judging from afar, we would find common ground in so many things we often view critically.  Let's face it, we all have "bruises"........some are just more permanent than others.........but all are part of our being and shared by more people than we think.

Bouncing off the wall........

I worked for quite a few years for an attorney who also was a District Court Judge.  Every Tuesday night, he would preside over cases, mostly traffic court type things.  He was a funny, honest, personable guy.

One of the things I remember most about him was the fact that he was always telling me he was going to have to enlarge the hallway, as I seemed to be constanting walking into the wall on one side or the other.  At the time, I just thought I was in a hurry and not paying attention to what I was doing.  I know now that it was the beginning of my MS symptoms.

It is strange to start walking, thinking you are going in one direction, and ending up at a completely different place.  Most of us who have MS don't really realize how off-balance we are until we fall, or knock something over that was not even in our original pathway.  Dancing, playing sports, and being generally graceful are not in the equation anymore.  It is heartbreaking to think that things we often took for granted are no longer going to be a part of our lives.

One of the reasons so many MS patients become depressed is the realization that our lives are no longer built around things we want to do, but things we can do.  It is like getting older, but not in a gradual way.............suddenly. 

When I get up, I no longer just start walking, but make sure I have my balance.  The last time I didn't do this, I just plunged forward, fell and broke my leg.  I don't want to "play" that anymore!

I hope some of you will put your imput into this blog and offer suggestions from your own struggles, or the struggles of someone you know going through this.  We can all learn from each other and give each other help and support.  No one need go through things alone..................

And the winner is.................

I have spent the last few years going from doctor to doctor, each telling me they think I have this or that.   The diagnosis results have ranged from Parkinson's to strokes to a range of other ailments.  At long last, they have finally agreed that I have MS. 
For some reason, it gives me comfort to at least have a handle on which direction I will be going.  At least I can put a finger on why this or that is happening, and not just wonder what test or treatment will be forthcoming.
Don't get me wrong; I am not thrilled with the diagnosis.  I do think, however, it is better than many of the other choices. 
I hope you will come along with me on this "adventure".  I am sure that some of you are going through the same thing and have suggestions to help with the day to day struggles that those of us with MS face.
Hopefully, we will make new friends and share ideas, encouraging each other through each day's ups and downs.