This Email I Got

I'm sharing this because it is really interesting and puts a ton of things into perspective. Sometimes I really need to remember how much bigger everything is compared to my problems -- not that I don't know that, I just like to be reminded. I took out the cheesy text because this speaks for itself.

12 Days Of Christmas

*Author's Note: I'm reposting this for any who might have missed it last year, but I am working on a new one for this year. MS is the gift that just keeps on giving... and giving, and giving, and giving, and giving.




On the first day of Christmas my MS gave to me,

1 life time of misereeeee.



On the second day of Christmas my MS gave to me,

2 frozen feet,

And a life time of misereeee.



On the third day of Christmas my MS gave to me,

3 hours of sleep,

2 frozen feet,

And a life time of misereeee.



On the fourth day of Christmas my MS gave to me,

4 stiff limbs,

3 hours of sleep,

2 frozen feet,

And a life time of misereee.



On the fifth day of Christmas my MS gave to me,

5 itchy spots,

4 stiff limbs,

3 hours of sleep,

2 frozen feet,

And a life time of misereee.



On the sixth day of Christmas my MS gave to me,

6 morning meds,

5 itchy spots,

4 stiff limbs,

3 hours of sleep,

2 frozen feet,

And a life time of misereee.



On the seventh day of Christmas my MS gave to me,

7 night meds,

6 morning meds,

5 itchy spots,

4 stiff limbs,

3 hours of sleep,

2 frozen feet,

And a life time of misereee.



On the eighth day of Christmas my MS gave to me,

8 new aches and pains,

7 night meds,

6 morning meds,

5 itchy spots,

4 stiff limbs,

3 hours of sleep,

2 frozen feet,

And a life time of misereee.



On the ninth day of Christmas my MS gave to me,

9 assistive devices,

8 new aches and pains,

7 night meds,

6 morning meds,

5 itchy spots,

4 stiff limbs,

3 hours of sleep,

2 frozen feet,

And a life time of misereee.

On the tenth day of Christmas my MS gave to me

10 year old I can't keep up with,

9 assistive devices,

8 new aches and pains,

7 night meds,

6 morning meds,

5 itchy spots,

4 stiff limbs,

3 hours of sleep,

2 frozen feet,

And a life time of misereee.

On the eleventh day of Christmas my MS gave to me

11 jerks and twitches,

10 year old I can't keep up with,

9 assistive devices,

8 new aches and pains,

7 night meds,

6 morning meds,

5 itchy spots,

4 stiff limbs,

3 hours of sleep,

2 frozen feet,

And a lifetime of misereee.

On the twelfth day of Christmas my MS gave to me

12 things I can't remember,

11 jerks and twitches,

10 year old I can't keep up with,

9 assistive devices,

8 new aches and pains,

7 night meds,

6 morning meds,

5 itchy spots,

4 stiff limbs,

3 hours of sleep,

2 frozen feet,

And a life time of misereee.

Pity, Party Of One, Your Table Is Ready

Yesterday I held a pity party for myself, against my own will. I tried to fight it but it wouldn't go away. Coming off of Tysabri and doing the oral steroids, I was hurting, irritable, edgy and unable to get any sleep. I did the steroids for 3 days and decided that the side effects are not worth it. My mouth tasted like I was sucking on an old penny that had been soaked in Robitussin and no matter how many times I brushed my teeth or ate mints, it wouldn't go away. I called my neurologist and told her this, my history of suicidal inclinations was in my favor, I am not going to finish my 5 days of steroids and the plan of having me do steroids for the next 6 months until Copaxone reaches its therapeutic levels has been scrapped. While trying to find a way to get my body comfortable, I spent too much time on Facebook and read all about every one's hot plans for the weekend, which sent my pity party into full swing.

For games I decided against Monopoly and went for Pin The Self Loathing On The Gimp. I fell into the old Why Can't I Be Normal trap and went round and round with that. I didn't want to admit it, but I was jealous of those who can go and do things, especially at night when I am counting down the minutes until I can go to bed. I want to jog again, walk my dog, read half the night, be able to keep up with Princess, shop all day with Sugarbowl. I want to be normal and feel like a 35 year old woman, not a 95 year old woman. I want to join in all the reindeer games and be able to stay up too late and rock it with a lampshade on my head. I do not want to be ME anymore. I hate the fact that MS has all the say over me and if I try to fight it I only hurt myself worse. If I try to push myself too far, I get too tired and my muscles start shaking, that overwhelming fatigue where if you don't rest you run a HUGE risk of hurting yourself.

Ugh! I have to stop this pity party NOW because I am only irritating myself more. Every once in awhile I have to vent this stuff and be with it so it can pass and I can get back to life. I hate feeling this way and I HATE feeling sorry for myself. It makes me even more of a bitchy jackass then usual, and nobody wants that. Luckily, my roomies were not interested in coming to my party and decided to tease and harass me to keep me from taking myself too seriously, so I do feel a little better and even started to laugh at the way they were walking like me and stumbling over everything while forgetting what they was doing 5 minutes ago. When holding a pity party, it is best to invite those who will not join in on the pity. I still wish I could party all night with a lampshade on my head, but at least I can admit that my dancing would look like the tin man in a rain storm and that image amuses me and makes me feel a little better.

From Bad To Worse

There comes a time in every one's life when you should just stop talking. No, really, just stop, before you make yourself look any worse. Sadly, some people don't like to stop and then there is nothing left to do but laugh and make fun of them. I am always available to laugh and make fun of anyone socially retarded enough to go too far, hence why I am sharing this story.

Recently a member/friend of the family told me that because I have MS I am not exactly a great catch anymore (not like I ever was). It would be hard for me to find anyone who would be willing to date me because of my MS; it is too hard of a thing for anyone to deal with and not many men would want a woman with my problems. I found it funny because:

A. Anyone who feels that way I would not be interested in because they are obviously idiots.

B. My ex thinks I am a great catch, to the point it makes me a little conceited sometimes. He makes me feel like if boys knew I was single they would be clamoring at my door to have me.

and C. I couldn't believe that anyone would say such a thing to someone with any kind of disease or handicap.

Luckily I am thick skinned enough and value this person's opinion so little that I was not even slightly offended. I told this story to every one who would listen because it is so ridiculous. My mother was not amused. In fact she was PISSED! She ranted and raved and was shocked that this person had made it this far in life without someone offing them. She is glad that it didn't hurt my feelings and that it was said to me instead of someone who would think that the general population truly believes that about a person "with my condition." My mom called this person up and ripped their arse for saying something so potentially hurtful to someone. After that, I got this email from this person:

subject: You are marriageable if you want to be...

I received a phone call from your mother saying I told you no one would have you. I never said that, if I did I was wrong. You are a special case. I am not telling you something you don't already know. If you want to get remarried you need to find someone who understands your condition and is willing to go with it. There is a site on the internet "Dating Disabled. com" There are people on that site with all kinds of conditions. And, there may be other sites that I don't know about. You need to find someone who is a "caregiver." This person may have problems of their own. Or, they could be perfectly healthy with a golden heart. You are marriageable. You just need to find the right person (don't we all?). I love you. I am sorry if I send you the wrong messages at times.

I think that speaks for itself and needs no commentary from me. I look forward to yours.

My Mattress Grave

Forgive my bout of seriousness here, I have a ton of things buzzing around my brain right now and am not feeling like my usual asinine self. Fear not, she will be back. I am not a serious person by nature, but so many serious things are going on that I am not up to my usual antics.

I had to put my cat, Flea, down. He was 16 and going down hard. I kept putting it off, hoping nature would take its course and let him go gently into that good night, but it was taking too long and I hated watching him fall apart. I got that lovely ball of evilness when I was 19. 19! And even though he was one of Satan's most devoted minions, I still loved him. I was going to bury him in my older sister's Pet Semetary but wanted him closer to me and didn't want to run the risk of him coming back and setting off a chain of murder and mayhem -- he'd done enough of that in this life. I held him as he was put to sleep. I couldn't let him go without me there. It's very quick, if you have never seen it done, and I hope someday someone will be kind enough to do the same for me if things get that bad for me.

I have decided to go off Tysabri and go back on Copaxone. I have been on Tysabri the equivalent of 3.5 years and am not liking the risks of PML for those of us who have been on it that long. It really bothers me that in 3 years the risks go from 1 in 30,000 to 1 in 800 for developing PML. Where would that put me in another year? Too close for me. I'm not afraid of dying. I'm afraid of living if I was one of the unlucky ones to suffer major disability. I am having the pre going-off-Tysabri jitters and am trying to get everything done around here knowing that I may not be able to do as much for awhile. Most people who go off Tysabri have major "rebound" attacks and I need my house in order before that can happen. I really needed to do something different with my room, organize all my crap or something, so I pulled apart everything and am working on putting it back together a better way. I like my room to be my own personal haven, not a mess of crap all jumbled together -- my collection of Fisher Price Little People does not belong next to my antique book collection.

Lastly, I will leave you with this quotation from Heinrich Heine, widely believed to be one of the best poets, and case of "probable MS" due only to the fact that there was no definitive testing available in his day (1797-1856). He wrote about his mattress grave from having to spend the majority of his day in bed, something I can relate to, having to spend the majority of my day in repose also.

A Free Mind In A Rotten Body

...a sick man is always counting on better days. My mind is free, and clear, and even cheerful. My heart is sound, almost sound enough to be eager and greedy for life, my body is so paralyzed, so rotten. It is though I were buried alive. I see no one and talk to no one.

April 25, 1848

Fabric Of My Soul

If you could take apart yourself, strip everything down to just your soul, what would be the very core of who you are? Your biggest passions in life. What makes you you, or makes you tick. The very fabric of my soul is 3 things. Just these 3 things that if I got rid of all the superfluous stuff would be left.

BOOKS!

The printed word is -- pardon the pun -- printed on my soul. I cannot be without a book or I get restless and crabby. I am a huge reader and will read anything if I can't get my hands on something better, even Sugarbowl's teen crap or my older sister's sappy romances. I never read just one book at a time; I'm always reading at least 2, although that feels like almost nothing to me. I like to read 3 or more, or I feel like I'm not getting any reading done. I can't understand people who don't read. It is incomprehensible to me. What do you do if you don't read? How do you go to sleep at night? No matter how tired I am, my eyes must go over printed words for at least a paragraph or it takes me way too long to get to sleep. A world without books would be a very dreary place and not a place I would want to live in.


Old Houses/Antiques

I love old abandoned houses. I love to photograph them and just take my time appreciating every last detail. They make my soul sing. I know that sounds cheesy, but it's true. I like to go alone and just let the house speak to me without someone else jabbering in my ear, which makes my family nervous, hence why I have a cell phone now. I like the antiques/houses of the common man. I can't relate to the rich and upper classes, being a common woman myself and assuming I would have been in the middle no matter what age I was born in. When I can get away and tear up crappy back roads, I am in heaven.

I love to go antique shopping and could spend all day looking at the old pictures. I have several old albums that I fill with the pictures that spoke to me and that I couldn't leave behind to molder in an antique store when they so obviously needed to come home with me. I have spent a lot of time studying fashions of the past 150 years so I would be able to date the pictures and know what I was looking at. It's amazing the great antiques you can find at a Flea Market or even garage sales and I am always on the look out for anything old -- except old men, sorry, gramps.


Princess

That's right. I love my family like nothing else, but Princess is the light of my life, the apple of my eye, the cream in my coffee. If something happened to that little girl, I don't think I would survive it. I don't want to live in a world without her. That world would cease to have anything for me if she was not a part of it. Yes, she drives me crazy, but I love her like nothing else. She doesn't believe me, but it's true. I would most likely off myself if something happened to her. I don't tell her that, but I do tell her that the world would have nothing to offer me without her an inhabitant on it. She can get me every time. She doesn't know how much she could really get out of me and that is a good thing, because I cannot resist that little girl.


I am very curious about the fabric of your souls, so please do tell. I like to know what makes other people tick, and please forgive me such a serious subject. I don't know what came over me. Probably this great book I'm reading, the old house I drove by yesterday, and Princess's sleeping face in my bed, reminding me of her sweet little face as a baby.

I Have Absolutely Nothing To Say

And I want to say it to you. I haven't been on here because I have nothing of interest to say about anything. We are all jogging along in our same old ruts that have been worn smooth by now. I have been suffering with the flu the last few days and between moaning, "H1N1, take me away!" and stoking the flames of my addiction to The Price Is Right game, I have not been even slightly busy. I am not even sure that I do have H1N1, but I like to tell Sugarbowl that she gave me the pig flu because she is such a pig. To which she threatens to punch me in the butt for saying because she hates being told the obvious -- has she seen her room?! I don't care to be punched in the butt anymore because, besides the bruises, IT HURTS! So I only tell her what a pig she is on the phone.

I hate being sick. I lay here and think about all the things I want/need to get done. I need to burn the leaves (for heresy and witchcraft), do the laundry, do the dishes, make sure the trash gets taken out, make sure the dogs get let out in time, etc etc. I also hate how being sick kicks up all those annoying MS symptoms that I thought were in the past and I had forgotten about. My MS Hug is girdling me tighter than ever, my itchy spots are itchier than ever, my right leg is even more dead and dragging than ever, my TN is even more painful than ever and not fully quieted by the meds that usually lull it for a few hours. Luckily, being a "sick" person, I have a fully stocked medicine cabinet and dug out my Amantadine and have started taking it and I am impatiently waiting to feel better. Those leaves ain't gonna burn themselves!

So there you have it. Aren't ya glad I (didn't say orange) didn't blog about all this boring crap? I'm even boring myself right now, but I have got in some great reading time, when I can step away from The Price Is Right. I AM going to win that showcase showdown before this flu runs its course!