Life is Hard - But Life is Good

After my last entry, many of you emailed me and told me that you read my blog consistently, loved it and appreciate my candor.  When I have also seen a few of you in person, you have told me the same thing.  Thank you, I will stop wondering why I do this. I often ponder why anyone would care enough to read my blog but many of you have told me you read it and that I am an inspiration. I haven't figured that one out yet - still pondering. So on that note, when you read it, if you haven't done this already, will you please look to the right of my blog and hit follower?  That would make me happy.  I would have followers.  I promise not to offer you any kool-aid.  I just like to know.

Back to the late 90's early 2000.  I went along in life raising our four beautiful children, doing my volunteer work and just making sure I didn't trip. I went along like this for several years, contnuing with my injections.  In the meantime I had developed high blood pressure and high cholestrel.  Was it genetics, was it my life style?  Who knows, what drug do you want me on?  I don't want a stroke or a heart attack.  I'm not martyring (SP?) for anyone.  I want and need to be around for my kids.  If my Doctor thinks I need it, I'm on it. Of course I questioned it, but looking at the numbers - which pharmacy do I want to pick these up at?

Life continued.  My Neurologist would get so upset with me because she wanted to see me every three months and I normally came in once a year.  She was never a happy camper but hey, I have an incurable disease, I'm on one of the few drugs available, there is nothing new out there therefore nothing more for you to do for me to warrant me coming in and wasting your time and mine.  I had plenty of appoinments to go to for Tyler.

That is one of my lifes pet peeves - to have my time wasted and to waste yours.  There is not enough time in life to be wasting it . . .so I didn't.  As with MS I continued to progress slowly and steadily.  But wait!  I have Relapsing Remitting MS!  That means you have a flair,up do worse and the get better again, at least a little bit.  But that never happened with me.  It was subtle and steady. Most times I didn't realize the changes that were being made to my body until it was too late.

Which is amazing because I have always been sooo in tune with my body.  For instance, each time I got pregnant I knew the day after conception.  The doctors always said that that was not possible, so I would just smile and know what I knew.  Ladies never let a Doctor tell you that you don't something about your body that you're sure of.  Its called a woman's intuition or that gut feeling and for many, if you pay attention to it, it will guide you well.  I lost three babies between Brandon and Tyler and with one of them, two weeks after conception I called the doctor and told them my baby had died inside of me. You have to miss a period before you can even take a pregnancy test and I hadn't missed a period yet so of course I was wrong.  I persisted!  (not me).  I told them that my breast had been a little swollen and definitely tender and my pants were already a little snug, but all symptoms ended that day.  The baby had died.  I think to humor this whacked out young lady, they told me to come in and they would do a sonogram.  Guess what? There was the beginnings of a baby in there with no signs of life.  They had to do an abortion to get it out of me so I didn't get an infection from it.  We were obviously terribly bummed.  Boy, I went way off topic - but my point is - ladies and maybe gentlemen, if you pay close enough attention to your body, you will know it better than anyone.

Back to my angry Neurologist. :-)  Each time I went in I had gone thru definite changes, none that she could have stopped.  My balance was getting iffy and at one appointment she ask me if I founD myself walking and hanging on to things.  Yes, as a matter of fact I realized that I didn't walk down the hallway at home without my hand on the wall.  and when I walked outside I usually held on to someones arm, Tyler's most often.  He knew exactly how to hold his arm to keep me steady.  With that realization, my Neurologist pointed out that it was time to get a cane.  What!!!!  I don't think so!  They brought one of theirs in and showed me how to use it. They do have to show you, which I didn't know, but you hold the cane in the hand of your good leg and when you walk, you bring the cane forward putting pressure on it at the same time as bringing your bad leg forward.  Crap, it did seem to make walking a little easier .. . . but a CANE!  come on~  So they told me to borrow the office cane for a week and then decide if I would buy one or not.  I used it to walk out to the car and we stopped at Johnstons Medical supplies on the way home and bought me my first cane.  Barry returned the office cane the next day.

Still In The Late 1990's Early 2000

When friends suggested that I start a blog about my living with MS, I wasn't sure how to do it, or where to start.  So I decided to start at the beginning, when I first noticed something was wrong and then being diagnosed.  And so I am continuing from there to get us to today.

I had a couple of wonderful friends email me after my last entry, sympathizing with what I am going thru with my injections.  I haven't done an injection for about four years, but more on that later.  On with the beginning, back to those nasty injections.

I had to do an injection every night, no matter where I was or how I felt.  This was now my life and I had to take it seriously, whether I wanted to or not.  I would get the kids to bed, climb in to my nice comfy bed after a long day, sitting next to my gorgeous husband . . . . and get out my bag of frozen peas!  Lovely!  I had resorted to doing the injection in my stomach every night because believe it or not it is the least painful place, once you get passed the mental part of stabbing yourself in the stomach.  Plus it was getting big enough that I had plenty of areas to do it on, never doing in the same place twice.  Imagine getting in to that warm cozy bed, next to your darling husband, to put a bag of frozen peas on your stomach forTHIRTY minutes, ON A FREEZING WINTER NIGHT!  Those were the hardest.  Ooooh, I'd be soooo cold. It would have been so easy to just say No. Isn't that what we always tell our kids?  To just say No?  Oh, wrong situation, Bummer.

I also found that I didn't give myself my injection on nights when I drank a little too much.  Thank goodness I didn't do that too often.  There didn't seem to be any repercussions from missing once in awhile.  So I did my injections every night . . or most nights.

One of the first symptoms that I noticed and have already talked about was my right foot dragging.  I couldn't pick it up normally, anymore, when I walked.  As hard as I tried my ankle wouldn't do it.  That is called foot drop.  I had to be very careful when I was out walking because any little rise in the sidewalk or ground would cause me to trip.  So I got good a walking looking down. 

Which is unlike me.  I am the one that walks down the street smilimg and saying hello to each person I passed that made eye contact with me.  Most people would smile back and say Hi, but I'm sure I freaked out at least a few.  Now I had to look down all the time to keep from tripping.  My Physical Therapist wanted to get me a Foot Drop Brace, but even with our good health insurance it would have still cost us $200.00 out of pocket.  We didn't have it.  How much can molded plastic realy cost?  Oh well, I was getting good at swinging my leg a little to the right when I walked to make it less likely to trip.  They were concerned that I would ruin my right hip because this was not a natural function of your leg.  Oh well, I will deal with that later.  Right now I am not tripping.

Another Addition

Do you know what it is like to have to stab yourself every night, with a needle  (ok, I not asking you druggies), and not have a choice?   Oh sure, they say you have all these choice locations, your thigh, you upper buttocks, the upper back of your arm and your stomach. But most of those places hurt like . . . a lot worse!  They recommend that you do different locations because it is not good to do it in the same location, because of . . . . its been so long I forget the reasons.

I've  never gone along with all that I am "suppose to do."  I listen to everything that is said and then do what works for me.  What would have worked best for me was not doing the injection at all, BUT that wasn't one of my options. So I had to go home, cry a little about it than "put on my big girl panties and deal with it."

Barry wasn't giving me any of my shots!  Heck no!  It gave him the willies thinking about it and he made the funniest faces at the thought of doing it.  I was on my own on this one. So I got my frozen bag of peas . . . you think I'm stabbing myself carte blanche?  I don't think so! I put them on my thigh for thirthy minutes to get it a little numb, and during that thirty minutes I had to warm the medicine in my hand since it is stored in the refrigerator.  A cold injectable is more painful than a warm injectable and I was definitely looking for less.

Crap, the thirty minutes is up, the liquid is warmed, now I have to fill the syringe and stab myself.  Gads, I've never been in to pain and I've always been a complete weanie when it came to needles!

When Tyler and I would go get our annual flu shots together, I always put on a brave front before hand because, of course, Tyler needed me, his Parent to show it was no big deal.  Yea ok, I was screaming inside!  I don't want to get poked, its going to hurt sooooo bad!  But we walked up and each got stabbed.  Well, mine would hurt for at least an hour afterwards!  Tyler would just laugh and say Oh. Mom, that didn't even hurt!"  Easy for him to say, mine was throbbing.

OK, so the syringe is full, frozen peas moved off of my thigh, I cringe, pinch skin, stab, inject . . .  well it wasn't too bad if I had to do it.  But I did just stab myself with a needle, so there was pain, but it could have been worse . . . a lot worse.  Thank God it is a little needle.  One down every night to go.  Take it one night at a time.