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.

Continuing The Beginning . .

I had a appointment with my Nurse Practitioner this morning so I had to get up . . . . .early.  Barry helped me get in the shower, I can do the rest myself, thank you, then he helped me get out.  While I was drying off I ask him if he could set up my toothbrush.  He said "Why, didn't you brush your teeth yesterday?"  And I looked at him, puzzled and said "yeaaa . . ?" So you haven't done anything since then to dirty them, have you?  Not knowing where this was going, I  said "I went to sleep and woke up with morning breath,"  he said, "Ooh, I just thought you forgot to flush the toilet."  I can imagine what my face looked like because he laughed!  You don't hear Barry laugh as hard as he did, very often.  It is a beautiful sound .. . .at my expense?  He is the quiet but deadly type.  That quiet humor that sneaks up on you when you least expect it.  Brat.  :)

Back to the beginning - after the spinal tap, you have to go home and lay down for 24-48 hours to prevent spinal tap headaches.  Yea, right.  I have four children and a foreign exchange student.  I had the spinal tap on Friday morning and I laid flat until Sunday morning, but we wanted to take Rami (my son from Tunisia) to the beach.  So we reclined my seat, in the van, as far back as it would go and took off for the Marin Headlands.  Now I've  never had a migraine headache,  which I understand is severe, but spinal tap headaches have to be worse!  BUT we did it!  I have pictures! ( Boy, I've got to get back to scrapbooking, I finished 1997 about a year ago, but haven't felt up to it since.  I would love to see those beach pictures).

Monday morning, Barry's off to work, drive all four kids to school and then head to San Leandro to take Rami to the location that the students will be meeting every day for their school.  Now mind you, I am in amazing pain.  The only thing I can think about is - get everyone dropped off so I can go home and lay down flat.  I drop Rami off and head home.  The pain in my head is now so severe I am sure my head is going to blow and I will cause an accident.  It is blinding pain and I still have to get on the freeway and drive home.  I called Barry at work and ask him to stay on the phone with me until I got home because I wasn't sure I was going to make it.  Obviuosly, I did.  I also remember having a doctors appointment for Tyler that week and my head was still hurting so bad that when we got to Kaiser,  Pediatrics mind you, and they took one look at me and ran us in to an examing room so I could lay down until Doctor came and Tyler's exam was over. 

If the pain doesn't go away after a few days they suggest you go back in for a blood patch to help get rid of the pain.  A blood patch?  What is that?  They shoot blood in your spine.  Another needle in my spine!?!  I don't think so!  By Wednesday I couldn't take the pain any longer and nothing was helping . . so I agreed to a Blood Patch.  I couldn't believe it, but the pain was phenomonal, so I had to!  Barry took me to Alta Bates Thursday morning.  I got in to one of those cute little gowns (not) and waited anxiously for the Doctor to basically come and give me anothe Spinal Tap.  After forever, the Doctor came in and said "How are you?"  I wanted to smack him!  I looked at him in amazement and said, nicely, "how am I?  I am in severe pain and waiting for you to give me another Spinal Tap, which has to be one of the most painful procedures you can do to me and they are done with me awake!!  How do you think I am?"  He looked at me and said "You don't need a blood patch.  If you can move around like you just did, you are on the mend.  Get  dressed and go home.  The headaches should be gone in another day or two . . . unless you want me to do a blood patch?"  I couldn't get dressed fast enough.

It was either 1998 or 1999 that I was diagnosed with Relapsing Remitting Multiple Sclerosis - 11 or 12 years ago.

In The Beginning

Brandon and Stephen had moved on to Montera Middle School.  Tyler and Kristen were still at Montclair Elementary School.  I was at the school all the time as President of the PTA.  I thought I noticed my right leg dragging a little, walking across the playground to the parking lot.  I thought it might be my imagination because it didn't happen consistently.  After a while I noticed my right thigh was numb.  It was such a bizarre feeling.  Brandon came home from school one day and said "Hey Mom, I bet you have Multiple Sclerosis!  We had an assembly at school today and it sounds like it."  I poo-pooed it and told him he would no longer be attending assemblies at school.

Remember Richard Simmons, the Oldies Exercise Guru?  I challenged Stephen and Brandon to do an exercise tape of his, with me, because I didn't feel they got enough exercise doing all their video games.  They accepted the challenge thinking it would be easy.  I honestly don't remember if the tape was easy for the boys, or not, or even if we finished the tape.  I only remember that I could not raise my right leg very much and my right arm seemed a little weak also.  I went for a physical and mentioned these possible weaknesses to her.  She referred me to my Neurologist.  After an examination, my Neurologist said I could possibly have Multiple Sclerosis but that I had to have a spinal tap to rule it out or confirm it.  That was fun.