Let's talk about MS

I'm pausing in telling the story of how Pepper came to be our dog...

I had a dear friend call me this weekend to talk to me about something she had come across that she was certain would help combat my MS.  Now, I have had someone tell me about a treatment, diet, or supplement that is supposed to be a cure at least once a month since I became sick two and a half years ago so I sometimes am not the most patient or gentle person any more when told of these amazing therapies.  I love this woman dearly and know she only has my best interest at heart so I had to step back before I responded. After explaining that I was very happy with my current treatment, she commented; "you know, you never read about people who are dealing with the disease successfully." and that got me thinking.  I haven't written much about my relationship with MS and when I started examining why, I realized that I didn't think I had much to tell.  I also think I felt guilty, like I wasn't sick enough to warrant telling my story; I have to really be suffering before I have anything worthwhile to say.  Then, I realized I was doing such a disservice to people who don't know much about the disease, or more importantly, may be newly diagnosed and are scared about what having MS in 2012 may mean.  MS treatment has come a long way and it no longer means a life certainly destined for a wheelchair, or worse.

I was "unofficially" diagnosed with Multiple Sclerosis in July of 2009.  I had been experiencing intense pain in my eyes and my husband made me go to the doctor - that morning.  Then my doctor got me an appointment with an ophthalmologist that same afternoon where I was diagnosed with optic neuritis.  I asked my ophthalmologist what caused that and she said, "well, usually, MS."  Um, what?  In the words of Vizzini from The Princess Bride, "Inconceivable!" I can't have MS and I walked down the stairs from her 2nd floor office, rather than take the elevator, as if that was going to prove I didn't have the disease.  My doctor got me in for an MRI the next day because I was leaving the next night to go to Las Vegas for the 4th of July weekend.  I learned that my MRI indicated "probable MS" while sitting in a Flamingo hotel room. Needless to say, I don't remember much else of that weekend.  I came back to Tucson and was given a referral for a neurologist who I could not get an appointment with until the end of August.  The end of August.  How on earth was I going to stay sane until the end of August? 

Unfortunately, I spent a lot of time researching Multiple Sclerosis on the internet while waiting for that appointment.  I read about diets, vitamin deficiencies and supplements, metal allergies, viruses, immunization reactions, stem cell research, CRAB drugs, blood brain barriers, remylination research, Big Pharma conspiracies, and so much more.  I have a friend who is a doctor and one of the first things he said to me when I told him my situation was, "stay off the internet."  Oh, how I wish I had taken his advice.  I was more confused and scared than ever.  I wanted to have some control over this and became convinced diet was the answer.  I went on a strict, no sugar, caffeine, gluten or processed foods diet and was adamant about following it.  I even ate salmon weekly (and I hate fish).  I lost 20 pounds in six weeks and yet I still felt terrible.  I was exhausted all the time; I felt drunk, dizzy, fuzzy and weak.  Was this how my life was going to be from now on?

The time for my neurologist appointment finally arrived.  KC and I went in and the doctor spent over an hour answering our questions and discussing treatments.  He told me I would have to have a lumbar puncture, a.k.a. spinal tap, in order to be 100% sure of the diagnosis.  Gulp.  Spinal tap?  I probably should mention that I had a horrible fear of needles.  I would feel faint whenever I had to have blood drawn or get a shot.  One time I passed out when I was having an IV put in.  The thought of having a giant needle inserted into my spine, literally, made me cry.  I'm happy to report that the procedure itself was a piece a cake, it was the days after while the hole in my spine was healing that were a bitch.  The results of the spinal tap made it official, I have MS.  That was in September, 2009.

My doctor initially prescribed Rebif for my treatment but my insurance company said, "sorry, she's taking Beta Seron."  I was mad.  All the drugs (available in 2009) are administered by injection but Rebif is taken every three days while Beta Seron is injected every other day.  I didn't know how I was going to be able to give myself a shot once, let alone every other day for possibly the rest of my life.  The thought was almost surreal and the irony that the thing I feared so much was going to be the thing that helped me was not lost on me. 

I began my treatment and I started to feel better, not nearly as tired and weak as I was, but my vision was still very impaired so I went on a three-day intravenous treatment.  I panicked when having the IV inserted the first day, but it got easier each day and more importantly, the treatment worked.  A short time after, my vision came back, almost completely.  Other than the occasional day, what I now refer to as 'an MS Day' when I feel exhausted or my equilibrium is off, I am flare free and have been since November, 2009.  I have responded to the medicine beautifully.  Except my body is not beautiful where I have injected myself.  I jokingly say I look like the Spotted Beast from the cartoon Maggie and the Spotted Beast because I have big red spots all over my bum, thighs, stomach, and arms.  But it is a small price to pay.  Speaking of small prices.... MS drugs are not.  I am fortunate and grateful that my husband has good insurance through his job.  Beta Seron would cost more than I make each month otherwise.  As I began to feel better, I got lazier about following my diet.  I am now convinced, since I was basically the guinea pig, that neither diet nor supplements are a substitute for my medication.  I have not noticed a difference when I change how I eat; at least not as far as the MS is concerned.

The pain from optic neuritis went away in a few days and I probably would have carried on without seeing the doctor, had my husband not actually dialed the phone to her office and handed me it and then driven me there for my appointment.  And my disease would have continued to progress unabated.  The gods intervened and I was given a diagnosis - crappy as it may be - and I was started on drug therapy that has slowed the MS; my last MRI showed no new damage.  So I can feel sorry for myself, which, to be fair, I did for a little while, or I can accept it, face it, take care of myself and be grateful that I am sick at a time when there is effective treatment and a hope for a cure in the future.  My ophthalmologist said something to me that put it in perspective when I went back for a follow-up visit after my first visit to the neurologist.  She told me that now I know what is wrong and I can begin to deal with it, so, deal with it. (My eye doctor is a very no-nonsense lady.)

So, in short, I have MS and it has changed my life, most definitely, but it has not ruined it.  Change can be good.  I have learned to not sweat the little things and to take better care of myself.  I appreciate my husband and friends more than ever and make a more concentrated effort to enjoy my children.  I do these things because Multiple Sclerosis came into my life.

Those horrid, evil chipmunks.

"I love you, KC.  

Every last week in May, we load up the suburban with golf clubs, luggage, three kids, two dogs and at least one box of Avon and hit the road to Michigan for the summer.  2011 was going to be different because we had just adopted Frank, so we would be traveling with three dogs instead of two.  Lilly and Daisy are old pros (other than Lilly gets car sick) and are excellent travelers so we were a little apprehensive about how Frank was going to travel.  Turns out, we had nothing to worry about, as long as he was next to KC, he was just fine.  Of course, after 34 hours of traveling, the adoration got a little annoying.

Damn you, chipmunks!

Frank spent most of the summer being tormented by the squirrels and chipmunks in our yard because he couldn't figure out how to get down those damn deck stairs to catch them!   He would sit as still as he could and watch their every tormenting move.  It soon came time for  KC to leave to go back to Arizona for a few weeks for work and Frank turned into the naughty demon dog from hell.  He would piddle in the house while looking right at me and then growl at me when I scolded him. When KC came back he turned into the angel dog again so I was accused of making things up when I would tell him what a stinker his little prince was while he was gone. 

Lil Bit

We sadly closed up the house and returned to Arizona just in time for school to start in the beginning of August.  I touched base with APR to let them know I was back and ready to foster and came home with a furry cock-a-poo girl named Lil Bit.  I know, I know, I wasn't crazy about the name either.  APR got her when her owner, who had had dementia, passed away, so it was the name she came with.  (Her future family would end up renaming her Sophie, a much better fit, in my opinion.)  Lil Bit was large and in charge and poor Frank didn't know what to make of it.  Fortunately, Lilly and Daisy are old and grumpy so nobody messes with them or face their wrath so Lil Bit soon learned to stay clear.  She had only been with us one short week before her forever family sent an email inquiring about her.  After we communicated back and forth, it was decided they would go on a trip they had planned in two weeks and then travel to Tucson from their home in Phoenix to meet her. Unfortunately, in those two weeks she charmed us all and I began creating different scenarios in my head about why she wasn't going to  work out with her new family; they wouldn't know that although she barked at strangers, she wasn't really mean, or that she only liked to snuggle on the couch for a little while before wanting to get down, or that when she paced back and forth at the kitchen counter and then sat patiently it meant she was waiting for a treat.  Of course, those thoughts were ridiculous but I was convinced I was sending her to live with a crotchety, retired couple who were going to think she barked too much and end up tying her up outside all day.  Fortunately, I never voiced these doubts out loud but I felt them in the pit of my stomach when we were driving to meet her potential new family.  We walked into Petsmart at the arranged time and when her new mom saw her trotting towards her, she exclaimed, "Oh, is that my dog?!" and immediately started crying tears of joy.  She hugged her and told her how pretty she was.  They carried her around the store in a cart and bought her all sorts of new things; collar, leash, bed, toys, treats, you name it.  They talked to the professionals at the store about proper nutrition and grooming.  They were going to spoil her rotten!  I was so happy for her and a little ashamed of myself for worrying.  Admittedly, her leaving was bittersweet.   Knowing this adorable little creature was going to be given a second chance and I got to play a part in it was an incredible feeling but I was going to miss her.  I cried a little when they walked out and she looked back at me but I knew she was going where she belonged and that now another dog would be able to get a second chance.

Pepper and his pal, Zippy

The next one that got another chance is asleep right now on my bed.  He stayed too long and there was just no way I could part with him, or his partner in crime.

More on that next time.

It all started with a scrawny 6 pound poodle

Frank, fka Napoleon

The beginning of how Pepper came to be our dog....

One Saturday afternoon my husband, KC, dropped me off at a local shopping center to get my nails done and, if time, run to Target (okay, I will always make time for Target).  As it turns out, it was the day of the local high school’s prom so the people at the nail salon just laughed at me when I walked in without an appointment.  Realizing I had at least two hours before my husband would be done with his errands, I started walking towards Target.  Now, I love Target but even I was going to have trouble killing two hours there, so on the way was Petsmart with a sandwich sign out front that said, ‘Adoptions Today’.  I hadn’t had a puppy fix in a while so I went in, thinking I could just hold a few puppies and smell their puppy breath and I'd be good to go.  I met the lovely volunteers from Arizona Poodle Rescue (APR) and they began to tell me about their organization and all the dogs available for adoption.  I sat and held several puppies for at least an hour.  They were so sweet, cuddly and precious but I knew I wasn’t going to adopt one, I already had two at home, Daisy the Miniature Pinscher and Lilly, the Miniature Schnauzer, and I definitely did not have time to housebreak a puppy.  I expressed that out loud, part excuse, part 'don't try to talk me into this because my family won't go for it.'  That's when Rochelle, the fearless leader of the Tucson chapter of APR, casually said, “you know, you should consider fostering.”   Fostering!  Yes, that's the answer!  I thought, “I could sell this to my husband. We wouldn’t really be getting a new dog, but we’d be giving a dog a home until they found their forever home!  It's perfect!"  I called my husband, it’d been well over two hours so I thought he’d be ready, but asked him to pick me up at Petsmart instead of Target.  Oh, and come inside.  “Oh boy,” was all he said.  He showed up and I rapidly explained the merits of fostering, not pausing for a breath until I'd made my case about how we’d be a great fit; we live on an acre, there isn't a stitch of carpet in our house, our kids are older and responsible and can help, our dogs are older and mellow, and, and, and... we love dogs!  He asked Rochelle a few questions and then said, "what ever you want to do."  Yay!  No, wait!  Is this a trick?  Don't I have to do some more selling?  Why are you agreeing so quickly?  I decided not to question it and just be excited.  Which dog were we going to go home with?  I was honest and said we didn't really have time for a puppy.  Rochelle decided a little white poodle named Napoleon would be a good first foster for us.  He was a well-behaved boy who had been found as a stray.  When he was picked up he had wire wrapped around his privates and was incredibly matted.  Rochelle said he seemed grateful during the entire grooming process and never gave her any trouble.  He weighed just six pounds but easily needed to gain at least four more pounds, you could see every bone in his body; poor fella must have been without food for a while!  He was definitely cute; he had a puppy face even though he wasn’t a puppy.  My concern was that I had been trying to pet him all day and he didn’t want anything to do with me!  “He’ll warm up to you when he gets home,” Rochelle said.  So, we put a leash on him and with a spring in his trot, he pranced out the store with KC.

When we got home, it quickly became apparent that Napoleon had a crush on KC.  He would look at my husband like he was the maker of liver snacks and made sure he was sitting right next to him, wherever in the house that may be.  Couch, kitchen, bed, bath - it didn't matter. Sunday morning came and the new dog had slept in our bed but never made a sound nor moved all night.  And no accidents!  What a good dog!  The sun came up and I woke to a little white dog sitting next to KC's pillow, staring at him while waiting for him to wake up.  Apparently, KC didn’t wake up quick enough for him because Napoleon decided to kiss him awake.  It was very sweet and my 6'5" husband loved it, all the while pretending to hate it, of course.  That night, I overheard him tell the dog, “You’re such a good boy, if you really are housebroken, we might be in trouble.”

I went to work the next day and got a forward of an email that a woman had sent APR, inquiring about Napoleon.  As his foster mom, it was my responsibility to contact her and let her know all about him.  I knew KC was going to be sick to lose him so soon.  I called him with the bad news.  “Tess, I don’t think I can give him up,” was his reply.  “Are you sure about this?” I asked.  Without hesitation, his one word answer was, “Yes.” Oh dear.  Here I was, a brand new foster mom and I’m already screwing things up, they're going to hate me.  I called APR and explained the situation.  Surprisingly, they were very understanding (as I found out later, they all had "been there") and the following Saturday, we went back to Petsmart to complete the paperwork and pay the fee and become an official "Foster Failure."  Napoleon was renamed Frank and he is stubborn, sweet, and a little prince.  He continues to be KC’s baby while tolerating the rest of us.  Little did we know what adopting Frank would lead to…