From Walker to Bed - ridden

When I began using a walker I got me a candy apple red one just like my van.  For a walker it was pretty.  Boy, it made me feel so much more secure than my cane.  Standing balanced at my car door and having to give up my walker, balance, push the button to open the big sliding door.  Balance, fold my walker, lift it up, keeping balanced and slide it in front the back seat.  Hold on to the van, push the button to close it and turn around carefully to get in the van.  I LOVE MY VAN!  I still do.  

It is interesting how I got in the van.  Since my left leg has always been the strongest, I balance on my right leg, bring my left up on the foot step that Barry & Stephen installed for me and swing my behind around to the seat.  Once there I was still able to bring both legs in.  When I drove I had to drive with my left foot for both the brake and the accelerator.  Most people use their right for both.  Thank goodness that it worked well for me.  I was still a safe driver and still could go wherever I wanted.  One day I was at Safeway shopping.  When I was done, I put the bag of groceries on my walker and headed out.  By this time walking with a walker was becoming very slow and very difficult.  Picking up my right leg to move it felt like a hundred pound weight.  It was tiring.  As I was slowly walking to my van and I kid you not, the wonderful woman who looked in her 70's asked ME if she could help me.  Wow, the tables had certainly turned in my life.

One thing nice about the walker, besides the security, was that I could put anything on it that I would normally carry.  It was great working, slowly but surely, around the house.  Also when I went out with friends or anywhere with Barry, I walked so slow and any distance was beginning to be so hard and I. Would be so tired by the time I got to our destination.  So the answer to that was, I SAT ON THE WALKER and whoever I was with pushed me!  It made life so much easier leaving the house.  Barry LOVED it a little to much.  He would run it or certainly walk really fast and then swing me around corners.  I'd be laughing!!  People would look at us!  It's so good that I never bad any pride to worry about what I looked like.  That's why going to the cane and then to the walker made no difference to me.  Comfort, comfort, comfort, security and fun is my motto in life.

At home it began getting harder and harder to walk even with my walker.  I found myself sitting in my walker watching TV all day.  Boy, that was a hard switch.  I NEVER watched TV especially during the day.  But what could I do?  My girlfriend, Debbie bean coming over and we would crochet together,  I actually made each of my four kids an oversized, thick lap blankets!  I was so pleased since my right had begun to curl, (spasm permanently.  It was interesting holding the crochet hook but by George, I did it!!  Who is George?

Then along cane my baby girl!  My Great Niece, Meilani!  At three months old, I began taking care of her for two hours, twice a week.  People were in awe of how I could it with my right weak and my right curled.  When you really want to do something, you usually find a way.


Do you have any questions for me?  I will happy to answer.  No question is too small or too big.  Any question about me?  MS? Me & MS?  My life?  Feel free.  I am here.

Sorry this not letting me go back and proof read this and correct this .  So I will just post it.  I apologize for all of the typos and missing words. I think faster than I type,

Boy I'm Back II

I left off at - now i have to walk with a cane.I found a very pretty cane in a catalogue and ordered it.  If I had to use a cane it wasn't going to be just any ole cane.  Mine was classy!  But it's funny, walking down the street with the cane, people would look at me, at the cane, back at me . . . And quickly look away.  "This lady was too young to be walking with a cane, yikes that means something is wrong with her!  Look away!"  It was too funny and I experienced that so often that when I wasn't looking at the ground, watching for bumps, raised sidewalks or tree roots to trip over, I would look the person in the eye, flash one of my young, vibrant smiles and say hi.  I freaked them out.  They weren't sure what to do or say to a young, friendly disabled person!  I cracked up!  I have always smiled and said hi to any one that I make eye contact with, I still do.  You can make some one feel better or . . . freak em out!  Not many people are accustomed to people being openly friendly on the streets.  It's a good thing, no matter who you pass, an adult, a homeless person, a child, even a disabled person.  Everyone likes to be pleasantly greeted. It is a very positive gesture to smile and say hi.  I rarely get any thing back but a smile and a hello.  Some times a surprised one, but that's even good.  Start doing it, it feels good.
I went off topic again.  I'm good at that.  Back to my classy cane.  It did help a lot and there is not a reason in the world why someone who needs a cane shouldn't accept that need and go with it. But you're  too young?  When I received my cane, there was no age limit listed on it.  People might look at me funny?  Who cares!  Trip em with it, I bet you're walking much better than you did before you received your cane.  Accept your cane!  Life will take many turns and you have to follow its road.  While it is or should be a wonderful journey, the road of life has bumps.  Just accept them, be grateful for all that is good in your life and the love that surrounds you.  Having MS, I knew by the way that I was progressing that I would be in a wheelchair someday.  Knowing that, my priority was - as long as I could see my children and grandchildren and hold them, that I would be happy.  How has that worked for me?  Next post.

I'm Back! Boy, I'm Bad, It's Been Three Years!

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.

Another Beautiful Day

Before I continue, I need to throw in some tidbits.  First and foremost my son Brandon said he would never say he ever participated in a Richard Simmons tape, :) he's too funny. Also before you have a spinal tap to confirm or rule out MS, you have an MRI on your brain.

Let me see if I can explain what Multiple Sclerosis (MS) is - each individual nerve is covered in what is called a sheath.  I visualize it to be like a little rubber tube around it to keep it warm, and I have no idea where I got that visual.  Each of these warm covered nerves receive the brains communications when you want to do something like bend your finger, use a muscle, raise your arm, bend over.  Things people don't even think about when they are doing them.

Because I have been lucky enough to be chosen to have MS, my immune system attacks my sheaths. Boy, if I had me a little gatlin gun in there. . .  Gads, I've got all these cold little nerves in there with no sheaths!  I'm sorry guys!  And these days it freezing, how awful for them!  Anyway, when I send a message to use something on my right side, there is no sheath around that nerve to receive that message so it doesn't do what I want it to do.  The sheath has been destroyed.  At these point, that can not come back. When that happens, it causes lesions on my brain and that is what is detected in an MRI.  I always joked about having brain damage, now its for real.  While people with MS do have lesions on their brains, lesions detected from an MRI can be other things also.  That is why the need for a spinal tap to confirm it.  Something in my spinal fluid said "ha ha she's got it."
So once confirmed, its like where do we go from here?  While many of the symptoms are the same for MS, it is also true that so many symptoms are different.  That is one of the reasons it is called
"Multiple" Sclerosis.  No two people manifest the disease in the same way.  Since it is a progressive disease with no cure, they need to control it.  There are several different drugs out there that can keep it at bay . . . for most people.  The first choice I was given was Avonex, which is an injectable administered with a long needle, once a week and you can have flu symptoms for a day or two and then it goes away.  My second choice was Beta Seron, which is an injection that ##&***^^^^##^**.  I didn't hear much of that.  I was still freaking at the idea that I had to GIVE MYSELF A SHOT, (I didn't follow in my Mom's footsteps to become a Nurse solely because I couldn't imagine giving someone a shot)  with a long needle, once a week and get flu symptoms.  Its like WHAT??? What kind of a choice is that?  BUT, I have a very serious disease now and I have to pay attention.  The next choice was Copaxone, an injection, with a small needle given daily.  Its called subcutaneous because it is a shallow shot. So I thought - ok, ok, I can do this one - IF I HAVE TOO - yuck.  Giving myself a shot every day?  Thats just wrong.  I haven't been back to my Doctor recently because she owes me two shots.  The last time I was in there she gave me my flu shot and said she would wait on the Tetanus shot.  I told her, I'm no fool, I'm not coming back.  Dang, now I am also due for the pnuemonia shot.  Ouch!

Back to the Copaxone.  I accepted that choice of injection and went home to come to terms with all of this.  To this day I don't think I've come "to terms" with it.  I just take it one day at a time and remember . . . . . there is someone out there much worse off than I am.