Hello Wellbutrin My Old Friend...

My silence is a result of traveling, writing for a couple of contests, (Anything submitted for consideration cannot be published in any other media, even in this lowly blog of rant.  But once I lose those contests I will be more than happy to share them here... you lucky dogs!).  And of course being off and on very ill these last two months, really has not helped things.  Thus far this fall, I have had three tiny tummy episodes (really not as cute as they sound), four instances of my back going out completely, and many days full of a feeling of pure crapiness.  And as much as you would enjoy reading posts that only consist of, "Fuck MS" over and over, I feel that even that is below my low bar of artistic integrity.  But today was a good day, and I definitely in the mood to share...

So I can definitely say that coming off of Wellbutrin  was an epic failure, well not epic... just a failure. For the most part it has been just... eh... I have been having a bit of a rough go of it as of late.  I really do not know if it is due to the lack of mood enhancers or if it is due to the fact that I really have been feeling so sick for the majority of the time.  For example, I was in Tuscany and I was too sick to leave the villa on most days.  So instead of going to Rome and Florence, I sat inside and watched Under the Tuscan Sun. Wellbutrin or not, that is just sad boarding on the mildly pathetic, and a hard pill to swallow for even the cheeriest of people.  So no big deal, I allowed myself to be annoyed about it and I moved on.  It really wasn't so bad, I still got to go to Italy, spend time with some family, and eat great food.  I was slightly sad but I still looked at my life as pretty great.

It was not until I was watching a Real-Life Documentary that I realized that coming off the mood enhancer ride was probably not a smart idea.  And by Real-Life Documentary I mean Reality Television.  And by reality television I mean the high-brow and intellectually stimulating world of The Real Housewives of Beverly Hills.  

Okay, let's start with first and most obvious indicator that I was not okay, I was actually watching RHOBH.  That alone should have made me run screaming to the medicine cabinet.  But reality TV, I am sorry I mean Real-Life Documentary TV,  is a slippery slope.  It starts innocently enough with Extreme Home Makeover and the occasional Dancing with the Stars; and before you know it you are eagerly watching  a drunk Snooki running through the streets of Florence in the middle of the afternoon.  Even a month later,  I am still trying to figure out which one of us is worse; me the slightly perverse watcher of "How to Make an Ass of Yourself 101" or the one actually making an ass of themselves for a paycheck.  That being said, I am elated that there was never a film crew following me around in my early to mid-twenties.  I would have a lot of explaining to do to my parents, and even worse to my future children.  Extremely hard to deny it you were anything but a perfect angel when there is recorded proof.  I do know that reality TV is loved by millions, so I did not judge myself so harshly for actually watching it.  It was only when RHOBH (yeah, we have that type of relationship, made me cry, that I realized that I was "not in a good place".  It was not even a good solid reality TV crying moment.  It was when one of the Wives's kids moved to Houston for the summer.  That's it. There was not a spiral of thought that went into something deeper, like the fact that I have not seen my family in ages. It was just that I was genuinely sad for a "Real Housewife of Beverly Hills".  And not even for a good reason, her daughter was going on vacation...for the summer .... and that's it.  And that is a problem.

I would like to say that crying for the Wives was the only indicator that I have been having a hard time of it sans Wellbutrin.  But it is not, and it actually is a nice segue into a rant that I have been meaning to have for a very long time.  People that are sick and that are struggling with ill health should not be forced to look like they are struggling with ill health.   When it is a huge effort to get yourself out of bed in the morning, you should not be forced to look in the mirror and have a tired/exhausted/bloated/pale/asymmetrical face stare back at you.  One days that I am really feeling terrible, I avoid mirrors all together, 'cause odds are good I ain't gonna like what I see. (Who looks good with the flu? MS is like flu, except it is the gift only that keeps on giving...and giving...) So I petition this to the Greater Power that Governs us all, "If you are going to make me feel terrible all/most of the time, could you please at least let me look like Gisele Bundchen, or at the very least her "ugly" twin.  Is that really too much to ask? This is second only to asking to no longer feeling terrible all the time. That is definitely my numero uno request; but if you can't, do you think that the all-knowing, all-powerful deity, could make me a little more Bundchen and a little less Sloth from the Goonies. Although, I do like Baby Ruths...

I am not a terribly superficial person and I fully believe that judging people on their looks is one of the worst ideas ever.   But the other day, when the Subway Guy asked me what job I had that made me always look so tired, and I could only smile and say, "No job. I have Multiple Sclerosis."  All the while wondering: "How many freaking days has he thought that?  It must have been a lot if it got to the point that he actually said it to me. I bet he never would have said that to Gisele. It is like putting Baby in corner, it is just not something anybody does.  It is really getting to the point that I do not want to leave the house without my "I HAVE MS" sandwich board and orange bell.   I have also considered carrying a picture of me from my early twenties so I can say, "See my husband didn't just marry me for my personality."  Not that I care, that much...well maybe I care a little... 

It has been a rough fall.  I knew that I needed help, so hello Wellbutrin my old friend... I am proud that I tried, sad that I failed, and glad that I admitted defeat before it got worse than it did.

So long, Farewell...To Mood Enhancers I say Goodbye!!

Betaseron is very effective drug in the treatment of Multiple Sclerosis. Taken correctly it can cut down flare ups of Multiple Sclerosis by one-third.  Minimal side effects may occur, please discuss with you Doctor if you have any concerns or questions.

Okay drug commercial over... One of the more interesting side effects of Betaseron is that it can cause psychosis and depression in those that take it. So long story short, Doctors give a drug that can make someone depressed, or worse psychotic, to people that were just diagnosed with a terrible disease. I cannot think of a more appropriate circumstance to prescribe such a drug.  But as it says on the warning label of the drug; the doctor has prescribed this drug because they believe that the benefits of its use outweigh its risks.  This instills in me a great deal of confidence in this drug's legal department's ability to properly minimize liability, but not much else.  The good news is that these drug companies are able to develop drugs to counteract all the side effects. This leaves sick people with drug arsenals that would put Keith Richards' to shame and a feeling that every part of their life is controlled by all that is lab created. 

When I first started on Betaseron I wanted to do it with as little additional medication as possible.   My previous last true break with reality was the winter/spring of 2003; and was, interestingly enough, the result of medication. To treat the episode of Optic Neuritis, I was hospitalized and given intravenous steroid treatments. The Optic Neuritis was resolved, but those steroids left some interesting side effects.  To treat these little ripples, as one of my doctors jokingly called it, I was given Valium.  If you have ever taken Valium, or if you have seen someone on Valium, you know what it can do to people.  If I could speak at all, no thought passed through my brain on its way to my mouth.  I made those Jersey Shore fools look  like Super Geniuses.  I also got into this weird counting habit, where I would count to seven on my right hand using my thumb. "Why seven?" you ask.  Maybe for Jesus... maybe because it was odd... maybe cause I was just too tired to do eight... your guess is as good as mine.    I don't think I had one congruent thought in six months, by that I mean about 8 months. It took that long to get it all out of my system and return to normal.. Well what can only be considered normal for me.    So six years later, I was not thrilled to do all of that again.   That was until the Make-up incident of 2009.

All I remember about what I was doing that night is that make-up was involved in my evening ablution; so I must have been going somewhere for some reason. Things were going great, until my elbow brushed against my make-up case knocking onto the floor. At that very moment Hallelujah started playing on my iPod.  I remember thinking, "The symbolism of this is astounding."  From there, I do not know when I started sobbing. 

As the tears poured down, I collapsed to the floor, clutching the soulful iPod to my chest, and wishing that life could afford me the strength to carry on.  At this point, I should also mention that nothing was broken and the only things that fell out of my makeup bag was a mascara, two lip liners, and a no longer used foundation. Truly a travesty in need of its own telethon.

I did not hear Andrew come up behind me; or even know long he was watching me before he touched my shoulder and inquired as to what limb was broken/missing/bleeding profusely.  I held open hands to show him the fallen wares and said something that I will never forget, "I may be able to clean this up, but I will never have the power to fix the world." ummmm... yeah... I think I had a problem.  I had to stop worrying about what was going to happen if I did get on another drug and seriously consider what was going to happen if I did not get on it.

Andrew was kind enough not to discuss the exact details of Makeupolyspe 2009 with the doctor the next morning.  He politely suggested that I might be in need of a little more help from the pharmaceutical community.  Instead of diving straight into permanent mood enhancers, the doctor suggested that we start with episodic alleviation.  A pill to take right when I think I am going to lose my shit, before I actually lose my shit; or in layman’s terms, Ativan.  I was given 20 pills in the hope that once my body got used to the Betaseron the episodes would cease. 

“Honey, did you take out the trash?”

“It’s Tuesday, the trash does not go out on Tuesdays.”

… Five Minutes Later…

“Honey, did you take out the trash.”

“It’s Tuesday.”

…Four Minutes Later…

“Honey, did you take out the trash?”

“Yup”

I became a record running into the same scratch over and over; enriching Andrew with the same annoying song again and again.  I also left refrigerator doors open, faucets running, Emma outside, and would wear my glasses when I already had my contacts in (and be so completely out of it, I did not notice).  I would forget what I was saying mid-sentence, wander off when people were talking to me, and even, occasionally, drool.  The problem was no longer that I was feeling too much;  it was much worse, I was not feeling or thinking anything.  Consistent support of a mood enhancing nature was going to be required.

The next day, I left the office with a refill of the Ativan in one hand and fresh new prescription of Paxil in the other.  It was suggested that the Paxil may take a couple of weeks to be at full force, so Ativan would still be available as needed.  Within the next week I went from taking Ativan to four times a day to not taking it all.  Paxil was a glorious relief; in fact I had felt the best I had in years.  The Betaseron was keeping the Multiple Sclerosis from being too active, and Paxil was making taking the Betaseron worth it.  Then the hunger started.

Imagine eating an entire Thanksgiving dinner, all side dishes, desserts, and appetizers included, and still wanting something sweet.  That was my life… all the time...everyday.  If I tried not listening to the hunger, I would get a full blown migraine, complete with piercing pain, loss of vision, and yes even intense nausea. I managed to be simultaneously hungry and nauseous.  I know that this sounds ridiculous but it was either eat or be in pain. 

40 pounds or 20 kilos or 2 Stone 14 pounds later, I knew I needed to get off of it… ugh…

If I missed even one dose I would go completely off the bend. This made me completely petrified at the thought of going off it all together, no matter how large my ass got.  But I knew that I needed to take that leap and get Paxil out of my life.  I got my doctor to switch me to Wellburtin.  The first couple of weeks were terrible.  The combination of getting off of one drug and onto another drug left me nauseous all of the time.  Unfortunately, it also coincided with Andrew’s and I belated Honeymoon to Paris.  I was fine on the Eiffel Tower, at Notre Dame, and The Louvre; but Disney Paris was a completely different story.

When one gets sick at a theme park they always hope that it is after the ride or on a ride that is so quick that they can hold it in.  So after successfully riding Space Mountain, Pirates of the Caribbean, and the Indian Jones ride (twice); I thought Star Tours, a motion simulator, would be no problem.

Have you ever been strapped into a large metallic pod crammed with the touristic representation of the world, at a temperature of around 100 degrees Fahrenheit?  If you have, then you know how long it took me to get sick.  Luckily, I only barfed into my own mouth and not the small child sitting next to me.  Unluckily for me I had about 4 minutes 15 seconds more of the ride to go.  Gagging and swallowing, eyes clenched, white knuckles pressed to my mouth, I made it through the seemingly never ending ride without closing down the ride.  Walking off that ride, I knew one thing:  I was going to do whatever I could to get off of this Mood Enhancement Ride permanently.

With the blessing of my doctor, I took my last Wellbutrin ever last week... I hope.  If I was going to blow, I knew that the only thing that would ever be truly harmed is my marriage.  As I love my husband, and would like to be married to him for the rest of my life; the first week of no mood enhancers occurred with my husband at a safe distance of 6,000 miles away.  It is tentatively safe to say, aside from the excess 40 pounds, I have gotten off this Mood Enhancing Ride relatively unscathed.  My brain has gotten used to the Betaseron, and I am honestly, the most content I have ever been in my life.  My thoughts and feelings are being regulated by the only thing that should be regulating them... ME! (Don't worry, pretty much everything else in my body is still regulated by the drugs!)  I have answers to why I always feel so terrible...I am married to someone that I love a little more everyday... I am just happy and life is awesome.  But in the event of a replay of Burger Smash 2010, I  still have one Ativan in an accessibly safe place. 

Writer's Note:

I would like to emphasize that one should only go off of any medication with the permission and blessing of their doctor.   Doctors are reasonable, and more importantly they are there to help you.  If you do not feel like your doctor has your best interest at heart, the only thing that you should be thinking about changing is your doctor.  That being said it is so important to educate yourself on every medication you put into your body.  Know its side effects, know what you can and cannot do when you are on it, know if there are different doses or options available.  Doctors appreciate a reasonable and knowledgeable patient. If yours does not, that is another indicator that you need to take your business elsewhere.  

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..."

One Letter to an Amazing Little Lady

My Dearest Little Niece,

Right now you are just a tiny babe in Hawaii. If you are reading this, then you are are old enough to know that you wish you remembered it. You had fun, go look at the pictures.

I am writing you this now, even though you are completely unable to read it, for several reasons. Most importantly, I want to be 100% positive that you will always know exactly how I feel and what I think about you, regardless of situation or circumstance. I want you to have my promises to you in writing, so you can always hold me to them. One of the most important jobs of the next generation is to hold the old generation to the promises of their youth. Finally, and the most important reason to me to be writing this to you now, is that I am sick. You will know this before you will be able to read this, so it is a little silly that I am even writing it. My illness is such a part of our family, that I would not be surprised if it is not one of your very first memories. Right now, at this moment this is the most there that I will ever be; and I really do not know how fast or how far I will fall. That scares me for so many reasons. But what truly scares me the absolute most is that there is a slim chance that you may never get a chance to know me or know how I really feel, and will always feel, about you. Not only you, but all of your cousins-in-waiting. By writing this letter to you now, I am asking you a great service. If I am unable to tell your cousins or siblings any of this, please tell them for me. This is a lot to ask from someone so little and I am sorry. But you are the oldest and will be able to have the most memories and I want all of what I am about to say to be part of that. I don't know what is going to happen tomorrow, none of us do. But as days get harder, I know in my heart that there is no better day than today to say exactly what I want to say to those that I love, especially you beautiful intelligent Avery.

So here it is:

I do not want or will ever expect you to be perfect. If you had been, I would find you exceedingly boring and probably more than a little annoying. You were given those faults that you have for a reason, use them. Use them to humble yourself around others; they are probably right about many things that you do not know or are completely ignorant of. You may be right in this one instance; but there are probably a million instances that they would be right on. Please keep that in the back of your mind when you are battling with someone for a stupid stupid reason. Perfection should be sought when considering the amount of kindness you are able to show others. I am not saying let people step on you, I am just saying let things go. You do not need to be right all of the time, or even any of the time for that matter.

Use these faults to push yourself to always be striving to become a better person. One of the best parts of life is that we are constantly growing. I pray to God that I am not same person in 20 years that I am today. Today, I am a pretty passable 30 year old. But a passable 30 year old makes a pretty pathetic 50 year old. Trust me I have seen too many 50 year olds acting like 30 year olds, and it is not a pretty sight. It usually involves spandex, botox, and expensive wardrobes. If you are still in need of clarification please rent Sex in the City 2. This old movie will show you how ridiculous 50 years look trying to act 30 really really is. If it does not exist in your time, which I truly hope that it does not, please just take my word for it. And if you see me acting like that, I think we will all know that the MS has truly destroyed every sense I ever had. You are still trying to master the art of rolling over. It feels ridicously hard now, but one day soon you will have it perfected. The best news that I have for you is that a new challenge is waiting.

Most importantly, use these faults to not take yourself so frigging seriously. When you are wrong, admit it, laugh at yourself, and learn from it. Laughing at yourself is honestly the bigger parts, as it will remind you how unbelievably short and beautiful this life is.

Is it really worth it to fighting for a something that you will probably not even remember what it is about. Ask anyone about a major fight they had, they almost always remember the fight, but very few remember what started the whole thing. I will also say that if you really remember it, it will probably be because you were so wrong that you made a giant ass of yourself. Stop before it is too late and save yourself from yourself. You can be your own greatest ally or your own greatest enemy; it is completely in your own hands to decide which it is going to be. I hope that I will be there to help you make some of those decisions for yourself. I am your Aunt not your Mom; it is my job to just be there for you... an often more often than not... giving you pieces of, probably very random (did you know that Robert Lincoln was saved by Edwin Booth in a random train accident? if you have a question about either of those people or why they are important... Google... if google does not exist use whatever replaced Google) advice. Even if you are completely lost or in trouble and have no idea where you are going or what do next; I will be there if you ask me to be. I promise to put my judgement aside and help you grow into the truly amazing human being I know that you are destined be. Please hold in your heart that you are never so far down shit's creek that I cannot reach you. There is nothing that you will ever do that will stop the fact that I love you more than words. That last last sentence is the most important. (Keep in mind that this is coming from your Aunt... so imagine how many million times more strongly your parents feel about it... )

You may be embarrassed by me; and that is okay because it is my job to help you to not be. I would put money on the fact that you will probably be embarrassed by all of us at one point in time. The best way to describe us Jacobses... is... lovingly interesting. We are loud, and we like to yell, and we like to always be right even about something as stupid as how to make pancakes. You will hear, "I'm just saying..." from all the Jacobs women so many times that you will not even hear that part anymore. But I will tell you one thing, and know this for sure, we love each other so much. We will be the first to tell you that you are wrong and the first to shout at you if you do something that we do not like; but if you fall I have never seen a family so quickly come to pick you up. And if you cannot get up we will sit with you until you can. Your Aunt Jenny will probably teach you crafts; but more importantly she will teach you about the beauty of the small things. How if you take the time, I mean truly take the time, you can make anything beautiful. But do not... I repeat... do not... ever say to her ever..."Sure I will help you make satin flowers." You just gotta trust me on that one kid. Your "Grandpa yet to be named" will show you that hard work and a job well done will really take you were you want to go. More importantly, he will show you how unselfish and loyal a human being can truly be. He is loud and he burst into rooms shouting, regardless of whether or not you are watching a movie; but in a crisis he is clear headed and in it all the way until the crisis is resolved. Your Uncle Charlie will teach you how things actually work, and in this how patience is often the greatest gift you can give to yourself and those around you. And then there is the love of my life, your Uncle Andrew... I can fill up a million pages of all the things that he has taught me and all that I love about him. But there are two things that he has taught me, and I hope that he will teach you. The first is that when something gets more difficult, push yourself to rise to the occasion. This is important for so many different reasons. Do not do this with the expectation that you will get exactly what you want by working harder. If you always have this expectation you will at least once, if not many many more times, be gravely disappointed. Do it, because when you quit the only thing you are really quitting is yourself. The second lesson, and the one that I have the hardest time with is that the only person that you have to compete with is yourself; and when you compare yourself to yourself you will never ever be jealous. And you will learn quickly that the less jealous you are, the happier you will be. (Please also ask him about Geeky stuff. I love it and he is so smart and knowledgeable about so many fun random things: Camping, Comics, books, tv shows, movies, technology; with him I have learned to appreciate things that I had never ever considered before. so soo soo fun and I have loved every moment of that part of him and me) Finally, there is our loving Mar Mar. Mar Mar is one of the most passionate generous human beings that you will ever meet. She will teach you the joy of putting a smile on someone else's face. When you learn that joy, and you feel it deep in your heart, you will be one step closer to the human being that we should all strive to be. But if you have not seen her throw herself on the stairs/chairs/tables/floor in a rapturous fit of pure frustrated emotion yet... wait for it.... it can only be described as classic....

I promise that I will help you find what is really in your heart. Help you separate all of the noise of your head and the world around you; and really understand where your heart wants you to go. When you do this you will never, ever, ever regret where you are. There will be times when life will deal you some low blows. You are not alone in that, life does that to everyone, and many times you will not be able to see the hard times that others are being dealt. But when you follow your heart, and I mean truly follow your heart, no matter what is going on that you cannot control you will always be happy with where you are. You would not believe how important that last part is.

Travel. Not so you have a bunch of pictures on the wall or a cool thing to say parties. Travel so you will gain an understanding of the world that you live in. It is a big place and there are so many amazingly different and wonderful people out there that are just waiting to know and understand someone like you. You may live in California all of your life or you may move around more times than you can actually remember off the top of your head. Do not be afraid to move somewhere new or far away, even if it is very far away from your family and friends. Being far from your family can be hard, maybe even one of the hardest things that you will ever have to do; but I will tell you from personal experience nothing will make you appreciate them more. Plus, it will really help you understand what you really want from life and who you really want to be.

Avery, I am sure that you have noticed that I did not mention your Mom or Dad. I did that for one reason, and one reason alone. You already know them better than I can articulate in a few sentences. One of the best parts of having a parent is slowly learning to understand them, and know who they are as actual people. If you ever have any questions about either of them, you can ask me. If I do not know the answer or cannot answer, I will never lie to you about it. This holds true for any question you ever ask me. I promise you that I will always point you in the right direction so you can get the honest answers that I may not be able to provide for you. What I do want say about your parents, and I am quite sure that you already know by the time you are actually reading this, is that you have two amazing amazing people who love you more than words can even begin to describe. They have impressed, but not surprised, at what excellent parents they are. But I will put it on Record here: I was and will always be against baby headbands....

Avery you are awesome. I really look forward to being a part of your life. I truly believe that you are the greatest thing that has ever happened to the Expanded Jacobs Family. (hopefully you will not be the only one!)

Love Always,

Your Auntie Andrea

PS The other thing you will get from me is limitless source of books... I am really excited about that.... Finally found the Complete Little House on the Prairie collection, most people settle for the seven book collection... not me you need the 9

Why Merlin Should be the Poster Child for MS instead of Paris "creepy eye" Hilton.

This is a quick essay as to why I would rather have Merlin be the poster child for MS instead of Paris Hilton. I mean isn't it bad enough that we have the disease... come on! If I can get some votes I will turn this into a more formal request.

Whether you have read the more intellectual L'morte d'Arthur or seen the brutalization by Disney in The Sword in the Stone, you are familiar with the story of Arthur. If not here is a quick rundown of the story.

Arthur Good. Will get Excalibur to unit Camelot into a wondrous utopia.

Merlin Magic. Will use Magic to help Arthur make wondrous utopia.

Morgana Bad. Will learn Magic from Merlin to crap on the wondrous utopia.

Magical Merlin can also see into the future, this gifts has its pros and cons. Pro, he is can SEE INTO THE FRIGGIN FUTURE. Con, he sees how he going to meet is end and there is nothing that he can do to change it. So in the end Magical Merlin will be imprisoned in a cave by Magical Morgana for all eternity.

This a bastardization not even suitable for Cliff's Notes, as this is just one small piece of the Arthur folklore. A piece, that for some unknown reason, I am able to readily relate to.

MS can be this same gaze into our future. I started to create my cave the moment I heard those two fucking letters. The room darkened, words were being said but not understood, and one image started playing over and over in my mind. This is how it would all end. I could just stop now. I began to feel as if I was already there, sealed and forgotten for all of eternity. I mean that is what Merlin did, right?

Ummmm... No, because Merlin is a friggin Badass. Even though he could not change his fate, he could change the world around him. Then when he finally went down, he went down fighting...

Does this last part sound familiar to anyone else?

MERLIN FOR MS MASCOT!

Thank you MS, I owe you one!

There are some benefits to having a terrible Neurological Disease... aside from free parking and Medicinal Marijuana. It has changed me for the better... in some ways...

I used to be the world's worst hypochondriac. The Disease of the Week, as Andrew and I would jokingly call it, every week I was deathly ill with some terrible terminal disease. Usually it would coincide with the disease featured on that week's House. It got so bad that there were times that Andrew threatened to take away my House watching privileges. I think that he did not because in the back of his mind he knew that that would not slow me down in the slightest. I still had Disease of the Week, is it just me or does that sound like the worst magazine ever, regardless of House. Because WebMD was always there to pick up the slack. Did you know that all paths on WebMD lead to cancer or some other equally terrible disease? There were also weeks that he would block WebMD via Parental controls on our wireless. That did not stop me as you can never block Google; which is a thousand times worse. Did you know that Google can lead you to every crazy that has ever had anything and posted it on the web? He unblocked after the Google incited latent Rabies week. This continued on for months, years even. I would wake up in the middle of the night gasping for breath, it had to small-cell lung cancer. I would have a terrible headache and blurry vision, so I had to be a brain tumor. The left side of my body would go completely numb, I had to be having a stroke. Much to his (I have to believe) frustration, sometimes he would find me at 3AM looking for abnormal fungi or leaking chemicals to see if there was some answer out there to why I was feeling so incredibly terrible, tired, numb, pained.... He would ask me what I was doing, I would tell him, and he would take my hand so he could lead me in bed. Let's face it anyone that is up at 3AM looking for toxic mold under their sink needs to be put to bed. It honestly was a hallelujah moment once I was diagnosed. I was right there was something wrong with me. But it was not a thousand different things, it was a thousand different things disguised as MS. There is now no longer a new disease of the week and I can honestly say that I have not checked WebMD in months. The disease of the week is the same every week, because every week is MS WEEK!!.. yay?... It is like a much crappier Christmas with all the laziness, but without all the presents. But on the eternally bright side, I know that I can control MS and not let it control me. It no longer takes my thoughts or emotions; most of the time... I mean I am still human. It is not like I have be chosen by the Guardians of Oa, reached a new stage of enlightenment, or anything cool like that.

To say that I am a very passionate person, is an extremely nice way of saying that I get angry really really really ... really ... easily. I can speak my mind without any thought to what is actually being said. I can be extremely passive aggressive in any email that I wish to write. I can break any dish that I feel needs to be destroyed. I can slam any door when I feel that will better emphasize my point. The list goes on... and on... and ... well on... Thanks to MS, if I let my passion overcome my words too much; I will either massively stutter or I will lose the ability to say words at all (even though in my brain can hear them perfectly, I completely lose the ability to say them, which is pretty common in certain people with MS). So thank you MS, now I need to actually think through what I am about to say. I need to take my words and organize them carefully and calmly in my mind before they can actually come out of my mouth. If I choose not to do this, they will come out in an in-congruent mess of stutters and forgotten words. When this happens I my words more closely resemble the adults in Charlie Brown instead of the intelligent argument I hear in my head. I also can no longer point in an accusatory manner when I am angry. All my victim will see is a hand shaking so uncontrollably that I look like I am about to go into a full on seizure. I don't even need to add that that is the complete opposite of vision of the strong and righteous person that I so desperately want to convey in an elevated situation. So now when I am really angry, I have to sit quietly with my hands folded in my lap, carefully considering and organizing my words. When it does finally come out the words are well thought out, semi-separated from emotion, and completely absent of any hand gestures. Try as I might, if I am still stressed or angry there is nothing that I can do to change the whole shaking thing. (SIDE NOTE: This does not apply at all to my wonderful hubby. I can give two shits whether or not he sees me shaking and stuttering. He has see me in a far worse states than that. So lucky him... can still yell at him... and no one else... seriously poor Andrew... send him a present...)

I feel the rhythm in music now. This is something that my beautiful little sister is always able to understand and appreciate, but was honestly always lost on me. I know that this sounds incredibly odd to most people, but I can now get lost in the rhythm. Before my mind would go in so many different directions; it would tie itself around the lyrics and everything else would be lost. It would analyze and dissect in an attempt to make sense of all of the words and how they fit into what is going on in my life. But now the beat can sometimes just put me into that moment. I can not tell you how much I completely and utterly love it! This is a moment that you need to be in right now, appreciate it and enjoy it. MS has taught me to appreciate that. All you have is this moment, a million things might happen in the next; but guess what, nothing you can do will change that. MS can be a ticking time bomb or it can be a reminder that life is precious, short, and beautiful. That second in time just you and the beat, nothing else.

With clear minds, patience, and knowing that each moment is a gift, (all of which happen to be the gifts that having MS has given me) we can beat this. Not in the way that we will not be hospitalized, feel like shit most of the time, or loose some form of normal function of our bodies; that my friend would be far too easy. We will push ourselves to overcome every challenge and every episode. MS becomes such a small part of who and what we are that we will not mention it to everyone that meet. It will no longer be the first thing we think of when we wake up in the morning and the last thing we think of before we go to bed. Sometimes a leg falling asleep is just a leg falling asleep; even Non-Msers have moments when they are sure that that arm is lost forever. It is only a side note that needs to be mentioned in passing and thrown to the side like the small detail that it really is.

So MS, this is the only time that you will hear me say this in a non-sarcastic way, , you have given me the gifts that have made you as irrelevant as possible. I truly believe that those aforementioned changes have been for the better. They have taught me things that I needed to learn and pushed me in ways that I needed to be pushed. If you want to give me a couple of more these episodes, I am all for it.

ummm.... Suck it MS!

Completely Random Topic:

I have decided that MS patients need a theme song. I think that I might have found one. It is by John Butler Trio. It is called Revolution, and it is originally about the oppression of the masses ( I think). But I definitely think that the last verse, which I have included below, should be the anthem for all of us MSers. Please let me know if guys think that it should be something else (Non-MSers are allowed to submit as well, some of them can still hear the rhythm). The last part especially makes me feel like I am back in control of my life. This is especially true in the moments when I shout it at the top of my lungs and do the full on air fist pump.

Revolution by John Butler Trio (last verse)

So tell me when you think we're gonna rise?
Wake from this slumber wipe the tears from our eyes?
Yes from this nightmare yes I must now wake,
open my fist my destiny I take!
Good people sick and tired of being pushed around,
we call them kings but I see no crown.
Tell me when you think we'll just stand up,
say enough is enough is enough,enough I'm saying

Running through the fire, running through the flame,
running through the hatred, pushing through the blame,
running through the hopelessness and shame,
revolution already underway.

Take back your feet, take back your hands.
Take back your words, take back your lands.
Take back your heart, take back your pride.
Don't got to run, don't got to hide.
Revolution.

In case you want to hear the rhythm: http://www.youtube.com/watch?v=x3Ky8zTh6DY The guy is even using a cane in the opening scene! How unbelievable perfect!!

Job Wanted

Semi-Educated person actively seeking position in the Employment Field. Cannot do anything that requires: manual labor, more than two hours in front of the computer, anything that requires individual to be on their feet for more than 30 mins, concentration, or travel of any kind. Must have flexible hours where I may not show up until 11AM and may be allowed to leave by 3PM. Must have paid time off for medical appointments, tests, and or errands. Must have great insurance and vacation plans; as I will need at least six months off a year probably for illness or simple exhaustion. If there is flu/cold/cough in office must be allowed to work from home or will be off sick for at least two weeks. Will fail most drug tests per legal prescriptions and may have to take Vicodin while in office. May also require afternoon nap.

Please email if interested or would like to run your business into the ground courtesy of MS.

Alcohol, Drugs, and MS

Wake Up:

1 Pill- to stay sane

1 Pill- to fight the pain

Breakfast

1 Pill-to help digest

1 Pill-to fight the nausea

1 Pill- to get digested food out

1 Pill-to fight the pain

Lunch

1 Pill- to help digest

1 Pill - to help the pain

Dinner

1 Pill- to help digest

1 Pill- to get the food out

1 Pill- to help the pain

1 Pill- to Sleep

Every other day: 1 subcutaneous shot

Every Fourth and Fifth Day: Extra Pill at night- to stay sane

As Needed- Stronger Pain Pills, Muscle Relaxers and Even Stronger Pain Pills

These are medication instructions for someone who has the brain damage of an elderly stroke victim.

On the bright side I am one of the lucky ones that has the medical insurance to afford this medication. Without

health insurance interferon can cost up to $3,000 per month... PER MONTH! Currently, I have four months worth of medication

in our house. It is hands down the most expensive thing that we own. Literally worth more than our car. When our house was broken

into last year, one of the first things that we checked was whether or not they got the meds. He did not, ironically he is a drug addict. Boy did he miss out...

Research has found that the interferon helps cut down MS attacks by one third. The interesting aspect of these findings

is that they (being the medical researchers, doctors, or company that manufactures it) have no idea why this medication is effective.

So the main medication that I am taking works, but no one can tell me why or how it works. It was stumbled upon by simply medical accident.

But if I use it regularly, it works and that is all that they can tell me. According to my MRI, it does work... kind of... they think... as I have less active lesions than I did before...

So yay... My body is killing my brain only a little more slowly. Who wants to buy the champagne?

You also may be wondering where the alcohol fits it, well I use that to clean the area before I shoot myself.

My favorite jokes:

I need to go home to shoot myself.

My husband shoots me when I am too tired.

Every husband wishes they could shoot their wife...

On the dark side (yeah, that works I guess), my urine has more chemicals in it than the Gulf of Mexico.

Surprised that it does not require a hazmat team...

Every four months I have to get my thyroid, liver, a full blood panel done. This medication can put a strain on the organs that are actually healthy and working.

I am just glad that they have not fully legalized medical marijuana as that would be truly dangerous. It has shown to slow the progression of neurodegenerative diseases, with the terrible side of effect of being a complete pain reliever. Vicodin is much better, I guess...

In Sickness and In Health

Millions of people make the promise that will stay with their partner in Sickness and in Health. Few people ever have to test that promise, and even less are able to keep it. Being married to someone that is ill is one of the most difficult things that a person can be presented with in their life. Coming from the half of the relationship that is sick, I can honestly say that it worse to watch the person that you love in pain than being the person that is actually in pain. The Caregiver, as they are often referred to in those Self-Help Disease pamphlets, have to stand by helplessly as their world becomes something that they can not control. There are many people out there that can not handle it; they remove the spouse and as a result remove the problem. The few that stay prove that unconditional love does exist.

Marriage is a partnership, a teeter totter, a balancing act, a symbiotic relationship; or

whatever euphemism you choose to explain a relationship of two people that are legally bound together for no other reason beside the simple fact that they love each other. (I do not consider any people that get married for the purpose of money, security, or a green card a true marriage. It is more of the legal arrangement of two people that will slowly and systematically drive each other to increasing levels of insanity.) When one half of the marriage is in and on out of service the teeter tooter does not tet and tot, the balance tips over, and the symbiotic relationship that can exist resembles more of parasite and host relationship. The healthy half of the relationship that has to do everything from doing the taxes to cleaning the bathrooms. Often times cleaning the bathrooms is not even the most disgusting thing that they have to do. Last year I was in the hospital with gastric paralysis. I was not digesting food properly so I was not allowed to eat, and they put me on an IV to keep me hydrated. Anyone that has ever had an IV knows that one of the most difficult parts of the whole experience is going to the bathroom. This was made worse by the fact that early in the week I had accidently ripped out my first IV on my right hand when I was getting out of my wheelchair, so the new IV had to be put into my left hand. I was left with one hand that had a damaged vein wrapped up in a bandage and the other hand I had a tube connected to a five foot tall machine. One the bright side both hands hurt horribly and made it nearly impossible to complete the third step of the dischargement process. After watching me struggle for a second or two my husband offered to help me with my dilemma. As a little girl when you dream of your future husband you dream of diamonds, flowers, romantic dinners, and holidays in exotic places. You never ever dream that at ripe old age of 29 your husband will offer to help you wipe your ass. tot...tot...tot...tot...tot...tet

The most difficult aspect of a Sickie/Normie relationship has nothing to do with the extra work that the Normie has to take on to cover for the Sickie. The worst part of this situation is that his disease and its treatments often steal away the parts of what you love the most about your partner. Whatever the disease does not destroy, the legal medications do and vice versa. I am handed one drug, and about seven or eight drugs to counter act that one drug's side effects. The top drawer of my dresser is an actual drug drawer full of prescriptions to help me sleep, stay sane, be out of pain, stave of anxiety attacks, and poop. The last often being the most difficult thing to complete without medicinal help. If one medication is forgotten there are endless situations and issues that the Normie must face. If I am yelling at my husband for something as important as putting the lid on the mayo jar too tightly, there is a little voice that whispers... you are crazy... you are crazy. Unfortunately, the crazy is screaming...JUSTIFIED...JUSTIFIED... JUSTIFIED... Don't let him get away with this!! One of the first things that he usually asks me when I am completely irrationally crazy, is whether or not I have taken my meds. If he asks, I usually have forgotten one or two of my pills and sometime it is just good old fashioned PMS. There is one situation that glaringly comes into mind: We were back in the States on vacation we bought Wendy's for lunch. We both ordered burgers. His plain and mine with all the fixings. I passed out the burgers and started eating when I realized that mine was plain. I started freaking out and when I mean freaking out... I mean... freaking... out. My reaction can only be likened to the illegitimate demon off spring of Gallager and Patrick Bateman. While I screamed, "Why does nothing in my life go right," I smashed my burger violently with the palm of my hand. We actually found bits of burger six feet away. I went from completely calm to a complete rage so quickly that I failed to check the burger that I handed to Andrew, which as luck would have it was complete with all of the fixings. Andrew did not need to ask me if I had forgotten my meds. He handed me the burger he was holding and he went without, as half of it was stuck to the walls and the other half was on the floor. He handles it with such patience and love that I consider myself to be so completely blessed. He sacrifices time he does not have to come help me if I need him. He sees who I am and not what this disease is doing to me. God gave me this disease, but he also gave me my Andrew so I can make it through.

The Normie has to stand and watch the person that they love be poked and prodded, vomit out all of orifices (vomiting from the nose only occurs when the explosion is exceedingly violent but it does happen), be in so much pain they can't see straight, and be so drugged that they often cannot focus on a conversation or anything else for that matter. Their spouse is sick and there is nothing that they can do to fix it. They just have to watch the person that they love suffer. In the same day Andrew had to watch two men stick their fingers up my pooper, two tubes (one too large) being shoved up my nose, and an IV accidently be ripped out of my vein. All of these things occurred without the aid of any pain killers. A truly great Normie, like my husband, will stay even though it leaves them with a feeling of helplessness and lack of control. I can't imagine how hard it is for a husband to listen to his wife begging him to make them stop. It would be so much easier just to walk out of the room.

At this moment in time I know that I am, probably, the most healthy that I will ever be. I am not going to get better, that is something that I know and have (kind of ) accepted. Living with that is hard, but what is often harder to deal with is the feeling that you can not be the person that you want to be. I never wanted to be a stay at home wife. I love working, making money, and just being an all around productive member of society. That is the woman that my husband married, but that is not the one that is his wife. In the last six years he has watched his wife able to do less and less; causing him to have to do more and more and more. Even without me he has a lot on his plate; as he is not average and he will never be. I could list off all the things he does with his day, but that would only look like I was bragging and frankly it only result in him being embarrassed. I do not know what the future holds. I do know that I can handle anything no matter what happens. I know I can do this because my Normie is one of the few that truly believes in Sickness and in Health.

http://www.youtube.com/watch?v=gvypiDWsaF8