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

Resist the Urge to Find a Cure

The only advice that I would offer someone who has just been diagnosed with MS, or any other terrible disease for that matter, is to resist the urge to find a cure. Unless you are skilled medical researcher or a brilliant doctor, you will not find a cure. I am sorry that this may sound harsh but it is the God's honest truth and I am simply saving you from yourself. Spending days and days on end trying to find out why you are in this place and how to get out of it will probably only lead to eye strain.

The internet will tell you a million things and only about ten of those things will be accurate. It will become an obsession taking you in a many different directions. At about 3AM on your tenth straight day in front of your computer, you will believe that you have found some amazing breakthrough that no one else has noticed. You will print it up and run to your significant other shouting something like, "All I have to do is avoid peas and the color teal for the rest of my life and I will be cured." He will roll over, grab the phone from you as you try to call your neurologist, and ask you to come to bed. The next day you realize that your new found piece of knowledge is bullshit and all you achieved is a night without sleep. You will literally sit in front of the computer for hours trying to figure out what you did wrong to curse you with this. Guess what... you will never figure out it... as even the most brilliant of medical professionals do not know. People have dedicated their entire careers trying to figure it out, and I will tell you that most of them are not using Google as their primary source of information. Leave it to them to do it.

I am not saying don't keep yourself educated and up to date on all the latest information, that is your duty and what you should be doing at all times. Emotions are emotions, allowing yourself to be sad and confused to why this is happening to you is just as important as allowing yourself to be happy. Just don't let it consume you, by trying to find all the answers. It is rabbit hole that you can easily find yourself falling down and the internet never ends...

They have not even figured out what causes this disease; do you think that they are close to a cure? I believe that the chant for everyone who is ill with this disease should be, "FIND A CAUSE!" Let us start with that. Let's try and make this the last generation that has to deal with this...

BUT RIGHT NOW...

Your cure is taking care of yourself by eating right, getting a good night sleep, taking your medication, and exercising. Enjoy what you have when you have it. This disease will take what it wants when it wants. Don't worry you will have time to sit in front of the computer when you do not have the strength to do anything else. Obsessing about those two fucking letters is the last thing that anyone with MS should be doing. So don't waste today because you HAVE IT, USE IT! Take control of MS by not letting everything in your life revolve around it. This disease will deal you some really low blows, stuttering through a sentence because your brain can't tell your mouth to say ink, tremors as you try to button your pants, being too tired to do anything... wait sorry I was trying to be positive... and I completely lost... my...

what was I saying????

Oh yeah... Fuck MS.

Dear Body

Dear Body,

As soon as successful Soul transplant is achieved we are so over. I know that this does not come as a shock to you; we have been having problems for years. Yes, I will admit that I fired the first shots by smoking and not eating properly. Still I believe that you have grossly overreacted. You went right for the brain, you know that that was a low blow. I just feel that both of us are growing apart. We just seem to want different things; you trying to kill me and me trying to stop you. This has just turned into a hugely dysfunctional relationship and I think it should end as soon as possible. That being said, it will only be possible if I can find a proper replacement for you. I will even help you find someone that wants the same things you do. Look at the number of people using heroin or go base jumping, there has to be someone out there that wants the same thing as you. Where will I go you ask, I will find someone that is missing a soul all together. That will not be hard to find; just look at the producers of reality television or members of the GOP. I will miss telling people that I am brain damaged, but that benefit does not outweigh the cost.

I hope that we can still be friends once we have separated. I owe you a lot, you got me through many years. It is time, or will be, that we both just move on. This will not happen immediately (technology does not exist yet) I thought that you deserved to be aware of my intentions.

Semi-Fondly,

Me

This was a winning day for MS. For anyone who knows anything about MS, you know that you have good days and bad days. Good days you win, bad days MS wins. You hope that the bad days fall on days that you have nothing important to do, because one of two things will happen if it does.

The first option is to suffer through the event and cross your fingers real tight that you can make it. This is a great... good... often just a stupid idea. This will, nearly always, make everyone around you just as miserable as you are. If you do not believe me, please ask my husband as he can rattle off about a dozen times that I have attempted this. He can be reached at 1-800-Saint1 (please do not call as I just made that number up). Usually when I try this, I end up leaving early, sometimes before I even get there. In favor of keeping my marriage, I have decided not to use this option unless absolutely necessary (i.e. weddings, funerals, moving house, etc.).

The second option often means sitting at home watching films and eating take away while those around are doing something that is actually cool. I am so fortunate to have a partner who would actually prefer to sit at home; so often he will volunteer to stay home to take care of me. I know that there are times when he just tells me that he wants to stay home when he really does not. He pretends and I let him, cause I love it when he is near me. But from personal experience, I can tell you that the feeling of relief of not going often is not equal to the disappointment of missing out. It is only when I remind myself how truly shitty I feel that I know what I did was the smart thing to do. I rarely forget how how shitty I feel, I am consistently constantly reminded of that all the time. Through this option, I have acquired extensive knowledge of almost all TV shows and movies in existence, got the feeling that I have read everything (non-porn related) that is on the web, and given myself so many at home pedicures that they no longer feel like something I do to treat myself. Another marriage saver, I keep my credit card in the other room so I am not easily swayed to do a lot of online shopping. I have to really want something to motivate myself to go get the card. When MS has its hold on me even the smallest amount of movement is too much. I have called Andrew on my cell phone to get me something that was ten feet away. I am lucky that he usually just calls me my nickname and gets it for me. Keeping the iTunes store closed is also a really good thing to avoid, those evil geniuses at Apple know that if you have your credit card information already put in, clicking buy does not register in your mind that you are spending real money.

If I feel too sick to go out I usually do not feel like cleaning (fatigue), reading (headache) or any type of craft (muscle fatigue/tremors/weakness/pain); in short anything productive. Usually anything that a Non-MSer would do to fill their time is not a great option for me. The bright side to this is that you do not have to feel guilty about sitting on your ass all day popping Vicodin. Bonus. I have tried to get my Doctor to prescribe me weekly massages, but no that would be ridiculous as Vicodin is much better for me.

Today MS won. I spent the day either curled up in pain, asleep, or in slightly pain-relieved haze. I did not get to take my Emma for a walk, read that book that I have been looking forward to so much, work, or work out.

I just looked at the clock, it is after midnight. I am still here MS and will forget about yesterday. It will not bring me down. New day, new fight. Suck it MS.