Multiple Sclerosis... You are one weird disease

Multiple Sclerosis is not always painful and debilitating. For me, the majority of the time it is just... weird.

Before I was officially diagnosed with Multiple Sclerosis I would wake up in the middle of the night not being able to breathe. Every time I tried to inhale, my the muscles would turn into rubber bands tightening around my lungs. Again and again, I could feel my lungs pushing themselves futilely against the brick wall that was my chest, never being able to get large enough to properly inhale. I am just glad that I am the type of person who does not panic when I wake up not being able to breathe. But I am the type of person that freaks the hell out,and then convinces herself, and attempts to convince her husband, that she only has six months to live... at 4AM...

Not only did I have COPD, I had COPD coupled with complete congestive heart failure. Diagnosis: Imminent Death. COPD explained the inability to breathe and the heart failure was diagnosed as breathing was made more difficult when I was laying flat. Of course: This diagnosis was brought to you by the expert medical opinion of the database search engine of WebMD. WebMD really should be blocked to all users after midnight. Anyone who is accessing that webpage at 2AM is not a sane user and a message should just pop up telling them that the only thing wrong with them is that they are not asleep.

I now know that I have a lesion in the dead center of my upper back. I do not know if this lesion is the exact cause of this tightness, I just know that this lesion cannot be helping. This condition is common in with people who have MS; and is referred to in the MS Community the MS Hug. I am so special that even my disease wants to hug me... yay...

I can handle the occasional chest tightening episodes. I have some pretty killer muscle relaxers that can nip that in the bud very quickly. And as long as I am not operating heavy machinery or being asked complex questions like, "Why is the milk in the cabinet?" I am only a drain on my lovely husband and not on society. (In case you are wondering my answer was, "If you can think of a better place to put it... Go for it..." but that was on a day that included both muscle relaxers and pain killers.) It is the weird tricks that a slightly damaged mind plays on you that makes this disease a constant presence in your life.

Here are some of my favorites:

-Pins and Needles/Numbness just on the bottom of my feet. When I have the numbness, I feel like I am trying to walk in the middle of a giant bouncy castle. If it is really bad, then it is a bouncy castle being used by small children all hyped up on pixie sticks. And if I am really lucky it is accompanied by a strong episode of pins and needles. So in a bouncy castle on two feet that are in a a perpetual state of waking up from being asleep... Does that spell party to anyone else?

-Electric shock that ends with a twitch. The weirdest part of this is feeling the shock and having to wait for the twitch. The twitch does not always happen right away. You know it is coming... you just don't ever know when...but it is coming...

-Imaginary Old Man Pants. By far this is the weirdest thing that is going on in my holey mind. I first noticed this a couple of months ago. I was laying in bed, reading, and by reading I mean watching TV, and it felt like my pants had ridden to high up on my waist. I only noticed this because I loathe the feeling, and I mean loathe the feeling, of anything bunched up around my waist. But when I went to adjust them, but there was nothing there. I was still feeling the old man pants, but I was not seeing them. I am fortunate that this feeling comes and goes and I am not in a perpetual state of wearing old man pants. Because that would be really annoying...

This hugging disease has me twitching, stuck in a bouncy castle wearing a pair of old man pants. And I am left trying to figure out whether it is God or this disease that has the sense of humor; all the while knowing that the important thing is that I keep mine.

Today... well, Today Sucked.

I knew that today was going to be a tough day before I even opened my eyes. My hands clawed themselves into tiny half fists that were so tense that even lifting them up caused a hugely uncomfortable sensation. As I tried to open them up into functioning appendages the pain traveled up my arms and settled securely in my spine. I would be content if from there it just parked itself into a dull ache. A dull ache is something that anyone can live with; but this pain can only be likened to a sharp shooting nightmare that radiates to every part of me that contains a nerve. My abdomen, upset with all of the attention that I was giving to the rest of my body, decided that it wanted to join the party. I can only describe that pain as doing a 1000 sit-ups and then getting punched in the gut. As I have never done 1000 sit-ups and then gotten punched in the gut this is just pure speculation used to describe something that hurts a heck of a lot. Sitting still was difficult, moving even more so, and trying to get back to sleep was futile. This was all before 6AM, yeah today was going to suck.

I got up to make myself a cup of tea, but only got as far as the living room. Luckily there was a half empty can of Mountain Dew sitting on the coffee table. It had caffeine, was there, and I was in desperate need of a liquid so I could take my pain meds; so I really did not matter that it was flat and had a couple of questionable floating bits. I swallowed the drugs in one gulp and prepared myself for a day of watching teenage moms and rich people fighting other rich people. Oh reality TV, you are a sick person's best friend and a lovely reminder that my life is not so bad.

I would love to say that I feel like I wasted my day; but I know that I did not. Life with MS is not easy; but more than anything I hate saying. "well I have good days and I have bad days." I much prefer the notion that, "I have days that are harder than other days." One of the greatest indicators of living a successful life is whether or not you have pushed yourself to do the best you can with the day you have been given. With MS, sometimes doing the best you can is simply brushing your teeth, taking a shower, and giving yourself a change of scenery by watching TV in the living room instead of in bed. I have to give myself the little victories and not mourn what I could have/should have done with my day. Yeah today was hard, and tomorrow may be harder; but the day after could be a day that does not involve reality TV and the couch. The day without pain killers, but more importantly the day without pain.

Ode to my 20's

I had my first episode of Optic Neuritis when I was 21, even though I was not diagnosed with Multiple Sclerosis until I was 28. I do not know if I am the odd man out, but I was thrilled to finally be diagnosed. For seven years, I held the belief that I was just a lazy hypochondriac. But it wasn't all in my head, it was my head. It defined so much of my 20's without me even knowing for sure it was there, that this belongs with the rest of writing. I wrote this on the eve of my 30th birthday.

Ode to my 20’s

With you I graduated from college and I finally started learning.

With you I have changed my name and I changed my life.

Together we watched two wars begin and worried as loved ones went off to fight.

Together we watched my hopes and dreams shift to something brighter than I could have ever imagined.

You helped me find friends for life and friends that I will remember for a lifetime.

You helped me no longer worry about my weight; but the weight of my words.

We have seen some of the world, watched as it shrank and we began to dream of seeing more.

I have had a living thing depend on me for everything. She may have four legs but she will always be my first baby.

I have felt true loss; only to realize that it helped me become truly found.

You cured my fear of flying by making me live overseas for five years.

You cured my fear of needles by making me give myself a shot every other day.

You brought me sickness; but more importantly you brought me answers.

You brought me heartbreak; but more importantly you brought me someone to steal my heart.

So my dear sweet 20’s the time has come for us to part; as we have grown together and grown apart. It is time for you find that new special someone out there to take on this wild ride; but please think of me as fondly as I will think of you. So thank you, for I would not be the person I am today without you…

BabyGate 2007 to Present PART II

So,
If you want something
And you call, call
Then I'll come running
To fight
And I'll be at your door
When there's nothing worth running for

~Glen Hansard When You're Mind's Made Up

Before you read any further please be sure that you have already read Part I.

Whoosh, whoosh, whoosh, whoosh... There was our answer clear as the fluttering on the screen. We had all of our fears squashed and even better we got a chance to fall in love. I remember being more scared than excited. All I could think was, "I am going to so screw up this kid's life. What neurosis am I going to hoist upon this perfect person due to my own insecurities?" Unfortunately, I never got the chance.

Of the women who have gestational bleeding, if there is a heartbeat during the bleeding, 95% of those women will carry their pregnancy to term.* Once again, I was the odd woman out. The only thing I kept thinking was the cruelty of it all. Why did we did we get to feel total relief, only to have the rug pulled out from under us? Why was he/she made so real to us, that we actually got to fall in love? It has only been upon greater reflection and the passage of time that it all makes sense to me. We got to see our child together. We got to fall in love with our child. Most importantly, we got to be a part of our baby's life for the brief moment that they were part of this world. That moment used to tear at me, now it is something that I now cherish as one of the best moments of my life.

As a child, I loved Never Ending Story. Heck, I still love it as a adult. But one thing I never understood was the Nothingness that was destroying Fantasia. I never really grasped how truly destructive Nothingness was until I lived those few months after the miscarriage. Convinced that the only way to cure it was to get pregnant again right away. When Andrew did not want to get pregnant right away, I became completely convinced that not only did he not morn the loss, but that he was secretly relieved that we were not still pregnant. Not only were we feeling a great loss, we were completely battling with each other. Even though it did not feel like it at the time, we both were simply fighting each other for understanding and respect. Understanding of what the other was feeling and respect for them for feeling it. In this case, I can honestly say that I was probably 90% wrong in this situation. I can even say that at the time I probably knew that I was wrong; that did not matter I just so desperately wanted that giant hole in me to go away. It pushed us to be the couple that we knew we could be, a couple that we might not have ever been without it. Further proof that our first baby is truly the angel in our life.

I am not telling this tale to illicit sympathy. That is not why I have shared this experience with you. I understand and know that many of you have probably had the same or similar experiences. I just needed to set the stage to what this whole thing is truly about: The Collective Decision Making Panel That Must Be Convened In the Event That Andrew and I Decide We Would Like To Add Another Family Member Through the Act of Maternal Gestation or its acronym TCDMPTMBCITETAAIDWWLTAAFMTAOMG.

Before the panel can be convened Andrew and I must decide whether we even want to have a baby. And there are A LOT of things to consider...

If I want to get pregnant, I must first be off all of my medication for at least two months before we can start trying. I, personally, do not like the idea of getting off of my medication at all. When I was diagnosed, I had 25 active lesions on my brain. 25! For those of you who are not familiar with MS, that is a fucking lot. One active lesion can cause a full on flare up. On my most recent MRI, I only had two active lesions; and that is thanks to my medication. What will happen to me if I go off my medication and then we spend a year trying to get pregnant? My brain is already doing a stellar job of impersonating havarti do we need to push for Swiss? Can I even make it through those two months without going into full on Relapse where I could lose my vision again? Or worse the use of my hands or legs or body or mind? I have two lesions on my spine already... And if I go off my medication... Can I do those three months of getting nothing but the flu every time I get shot when I need to go back on?

Then we need to get full permission from

TCDMPTMBCITETAAIDWWLTAAFMTAOMG to actually go off the drug and start trying. This panel can and will include my neurologist and my primary care physician. Other specialists may be added as needed. They can include my internal medicine doctor, surgeon, counselor (the person in charge of seeing if I am fully accepting of my "illness") and or tummy doctor (Sorry I don't know what they are called or how to spell it close enough for it to come up on Google). Our family expansion will completely and utterly depend on their decision.

What if we get pregnant and the same thing happens again? Due to all of the changes that ocur in the body, miscarriage can cause another relapse. Can my body handle quickly being pregnant and then quickly not being? Could I handle it at all? What if happens again? and again?

Say we do decide to have a baby and we actually get pregnant, what next? Some days, I barely have the energy to brush my teeth and watch reality TV all day. Can I handle a baby, a toddler, a school age child or even worse a teenager? Duct taping your child to a chair is not good parenting skills, so that is not an option. Just cause I have no energy does not mean that our child will not. There is hope as they would be half Andrew, but that is completely nullified as they will also be half me. Will I be able to handle it if their first full sentence is, "Mommy's having a relapse"? Or even worse, what if I wake up one day and my legs don't work? Could I handle hearing my child screaming and not being able to reach them? Or even worse, what if I am holding my child, and all of the sudden my legs go out and I fall? Or my arms get too tired and they go out and I drop them? I dropped the milk carton the other day, babies can not be replaced at the super market. Andrew is in the Air Force, what if I have an episode and he is away for a week, or a month, or several months. I do not want him to be the one that they send home because "their wife needs them". It is bad enough that I am crazy... but I don't want everyone assuming I am that crazy.

What if.... eh shit.... Andrew and I are smart people, we will figure it out. We will do what is right for both of us, when it is right for both of us. We may have a baby, we may adopt, we may do both, or we may just be the ridiculously cool Aunt and Uncle that take their nieces and nephews on really cool trips and help pay for college. (Courtney, I am not putting in writing that I will pay for Avery's College here. It is a thought and just a thought... love you!)

Whatever we decide, we will have to consider my MS. It is a huge factor in this equation, but we will not let it be the whole equation. Life is too short to give MS that much power.

*Quoted to me by my Doctor and supported by some websites, but am not quite sure of the accuracy. I just know that the odds are strongly in favor of successful gestation.

BabyGate 2007 to Present PART I

Andrew and I had been married for a year and a half when the first serious discussion of having a baby occurred. We were driving to a friend's house getting ready for a light night of drinking and hanging out. Because we had to drive home we had to figure out who was going to do the drinking and who was going to do the driving. Long story short, or short story long, Andrew asked me if my period was late. Ummm.... we had just moved, then the holidays, and there was a lot going on so... ummmm... noooo....mayyybeee...ummm... nooo. As that was my answer almost verbatim, Andrew asked me to do something that he had never asked me to do before and has never asked me since, would I please take a pregnancy test. As fortune had it, we were sitting in the BX parking lot while having this discussion, so there was really no reason to deny his request.

We walked inside together only to to separate him to the electronics department and me to the baby aisle. I would like to take a moment to register a complaint regarding store layout here. Why on God's Green Earth would you place Condoms, Baby Diapers, and Pregnancy Tests all in the same place? I know in theory that all of these things belong together, in theory. But you take one look at the cost of Baby Diapers and it will make any ardent person with the case of the Babies want to do an about face and reconsider the loss of disposable income. Then there are those that are slightly stressed about the possibility of spawning new life and right above the pregnancy tests are the condoms mocking the irresponsible on their poor planning skills. Put the Baby Diapers with the toilet paper, the condoms with alcohol, and the pregnancy tests with the cotton balls. I don't know why cotton balls, it just seems to fit. But I digress...

I quickly purchased the cheapest PT and headed straight to the public bathroom. I had nothing to worry about so it was not something that really needed to be taken seriously, or so I thought.

I locked myself in the disabled bathroom as there was more room and its own sink and trashcan. I took the test quickly and waited. Just as a screaming child entered the bathroom the little pink sign appeared in front of my eyes. Never in my life have I been so glad to have just finished peeing. I emerged from the bathroom holding that little piece of plastic. The woman with the screaming child took one look at what I was holding and the look on my face and quickly quieted her child. Realizing that it was probably not the most polite thing in the world to hold a pee stick in front of one's face in a public place, I quickly shoved the life changer in my pocket. Again, not the best place for it but I needed proof in case I stumbled into a world of disbelief.

Right around this time, kids everywhere had those crazy shoes with the wheels in them. I swear that they were issued to every child on RAF Lakenheath that year. If a child could walk they could glide. As I emerged from the bathroom, I stumbled into an entire flock of gliding pre-teens circling around me like the flying monkeys from the Wizard of Oz. They seemed to have planned this to further scare the shit out of me. To this day I cannot see one of those kids gliding on the their skate shoes without hearing the Wicked Witch's Flying Monkeys Theme song in my head.

I still remember walking up to Andrew. He was in his tan winter coat with his back to me. I tapped him on the back and uttered the words millions of women have uttered to millions of men, "I'm pregnant." It is said that you can see someone cycle through a dozen of thoughts with a dozen emotions. I did not believe that until that moment. "You're joking!" turned to "How?" which turned to "When?" then cycled into "oh yeah..." which changed into "oh, shit!" then "Oh Shit!" then "I am so not ready for this," and finally "My wife is pregnant and I am going to be a Dad." I saw that all in his face in the half a second it took for him to hug me.

I would love to say that the story ended happily and we welcomed a beautiful baby into our lives; but that is not how this story ends. I started bleeding so we went to the doctor. The only way to tell if everything was okay was through an ultrasound. The only thing that the Doctor said before she started the test was that she "fully expects tears either way."

SOOOOO..... BETASERSON TIME ... I will finish the rest of the story tomorrow. I can tell you though... it gets pretty good... but it is my life so I might be a little biased.

http://www.youtube.com/watch?v=SESI19h4wDo

What a long strange Ambien Trip it has been...

One of the crappier parts of taking Betaseron is that it can cause extreme insomnia. I have no idea whose bright idea it was to design a drug that causes insomnia to patients with extreme fatigue issues... but figuring out a drug company's motivation is roughly equivalent to trying to figure out the good Congress does for the American people. (I do know what both have in common though. The Answer: Screw the American people. But that was only if you were wondering...) Political aside aside, doctors can prescribe a sleeping aid to help counteract that side effect. I was first prescribed Lunesta, which was fantastic, if its purpose was to get me to jump on my bed like a four-year old who just had their first pixie stick. So I asked my doctor for something else. He prescribed me Ambien. I LOVED LOVED LOVED Ambien. At first it only had the one small side effect of making me talk in in my pre-falling asleep haze. Nine times out of ten, I do not even remember that I do this. The only reason that I know that I do this is that my hubby provides me with a little good natured ribbing the morning. I have asked him to tell me some of his "favorites" for your entertainment. They are as follows:

"Strawberry shortcake needs a haircut. That shit is out of control."
"Where did all these marshmallows come from?"

"Are you enjoying your soup Bears? The secret ingredient is love... and poison!"

In addition to simple phrases, I have also tried to get him to help me train the dog, and, more often then not, attempted to get intimate (with my husband, not the dog). If any of these things happen, he will ask me if I have taken an Ambien. If I respond by saying, "You've taken an Ambien," he knows that I have. After all of this, I am quite surprised that he still sleeps in the same bed as me (or more importantly, why he still eats the soup that I make for him). I never Tiger Woodsed anything or stood up on a plane screaming, so I figured a little talking in my sleep never really did any harm. I did not take it too often and if anything it gave Andrew and I a good laugh, so really no harm no foul. That was until last week. Last week Ambien and I officially ended our professional relationship, well unless I go to a laser light show or find a place to get glow sticks wholesale.

I had never heard that some people hallucinate on Ambien. If I had, I don't know if that would have changed my mind on taking the drug. So many of my medications have such terrible side effects that the possibility of a six foot bunny would not have scared me off. That was before I knew that my hallucinations were going to be more Donnie Darko and the man in the bunny costume, and not so much Jimmy Stewart and Harvey the friendly pooka. But before I get into that let me tell you about my bathroom rug.

In our bathroom we have this shaggy thick beige rug. I was standing in there brushing my teeth, I started to notice that the rug was really dirty. I mean really dirty, as it seemed to be covered in black dots. As I began to look closer, those black dots started to move. My first thought was oh great, Emma has got fleas and she brought them into the house. That was until the rug turned a shiny blue and red color and started growing around my feet. At this point, a sane human being would probably start freaking out or at the very least stop staring at their rug. But I am not so I did not. In fact, I did not even know how much time had passed until my husband asked me if I was going to take another ten minutes. When you take into account my vision problems, list of medications and their side effects, and my spotty MRI, hallucinations could be attributed to almost any single thing or a combination of a few things. As I had taken all of the drugs many times before, I chalked it up to a one off experience brought on by exhaustion. As they say, if I only knew then what I know now.

A couple of nights later, after several hours of tossing and turning, I decided that an Ambien was in order. I took one and attempted to drift off; but that is when the baby started crying. We don't have a baby. Weird yes, but we live on a busy path in Oxford City Center... so probably someone just walking their crying child... outside... at 3AM. I have seen Toddlers & Tiaras, so I can believe that someone would consider that good parenting. I poked my head out the window in the hope that it would.at least cause them to move on to a new locale so I could get some sleep. No inept parent holding a screaming infant or anyone else for that matter, but the crying continued. Our house was built on the land that had once been a part of The Rewely Abby. All that remains of this 13t century abbey is the wall lines the path outside our house. Hmmm... Ghost Baby? ah... What harm can a ghost baby do, really? It was not until the light on TV turned into the two glowing red eyes of a floating tissue monster that I started to freak the fuck out.

As the tissue monster kept telling me that sleep was not option, I decided to go watch TV in our living room. I would like to say that the hallucinations stopped as soon as I got into a well lit room, but luck is rarely on my side. Here is a few of my greatest hits from that night:

~Andrew's back pack started to shake like it had a great secret to share with me. Because I did not open it to discover its secret, it started to grow brown shaggy hair in anger.

~Remember Chairry from Pee-Wee's Playhouse? Well, her cousin spent about 45 minutes trying to talk to me. On the bright side I was not hallucinating the entire chair, it was just our blue arm chair trying talk using the cushion and seat as its mouth. The hallucinating the entire chair... well that would have been just insane.

~My dog Emma's duck toy came to life. It only got so far as to lift its head and flap its wings a little. Thank God it did not talk, but it was able to look into my eyes to telepathically plead with me to never use it to play fetch with her again.

Although, it is not unusual to talk in your sleep and have very vivid dreams, hallucinations on Ambien do occur in roughly less than 1% of those that take it. I found that information out as I was aggressively googling in between hallucinations. One woman even saw elephants hiding in her closet, another thought she saw a volcano erupting in her backyard; so at least I am not alone in my visions. Armed with that information, I was able to go back into my bed tell the baby to shut up, the tissue monster to flush itself, and finally drift off to sleep. I do remember the last thing to cross my mind right before I fell asleep, "I can't believe that this shit is legal and pot is not..."