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10 years..

I was reading Trevis Gleason’s Multiple Sclerosis Blog this morning, Generations of Multiple Sclerosis… and realized, Shit… I’ve been diagnosed with (Relapsing-remitting ) Muliple Sclerosis for 10 years now. ( back in May)  Hard to believe it’s been 10 years..
I look back at when I was quickly diagnosed and how teribbley horrified I was of MS.. I had No clue what is was, or what id did.. I heard somewhere off in the distance, Montel William’s had it, but still didn’t know what it was.. All I know, is that it was just known to me as, “My end of the World.”  10 years later and still battling MS, I’m alive..  I still have my good and my bad days. My pain has increased, the Fatigue has reared it’s nasty head..  And I find, I’m more ’emotionally’ exhausted than anything else. The, ‘I can’t hold the pain in any longer,hard gut wretching sobbing cries’ hit you. You realise that you are ‘tired’ of living with this disease, and you just want to give up, and let MS win this battle.. But somewhere, somehow, I gather the strength to stand back up and keep fighting…

New meds….

So my Neuro put me on some meds (Gabapentin 300 mg to start) to help with the pain I’m having.. Lately it became to much to deal with, so I asked for something.. anyone who knows me, knows I DON’T like taking meds.. bloody hell, even my own Neuro knows it! I think he was shocked when I asked for something.. lol
So I get the meds, and of course the side effects are a no-no for me, and I wait a few days before I take them.. hemmed and hawwed and finally took them.. and hey, what do you know they work.. Most of the pain is gone.. and I slept.. But damn.. they make me feel high all damn day.. My head is floating somewhere, and my eyes .. well it’s like watching a SLOW motion move… it’s like the vision lingers after the eye itself moves.. weired feeling.. LOL but glad to pain is gone.. But don’t know if I like feeling like this all day.. O_0 Loopey…
I’ll continue to take them, and see how I feel in a week or so.. If I still feel like this, I’ll talk to my Neuro.. :S

*sigh*

*sigh*

yep, it’s one of those feel good real deep sighs.. You know the sighs where everything troubling you comes out with the sigh.. and you feel so light afterwords..
Well, I had a bit of a breakdown lastnight and let it all out to hubby..  All my fears and all my worries.. Everything.. all the mishap that goes on in my brain of mine.. It just flowed, the heavy sobbing, the shaking cries, it all came out.. 
 I know it may be selfish of me to trouble him with my poor me I have MS woes.. but he helps.. just holding me and not saying anything sometimes, well, it helps.. Thank you baby!
You are my ROCK!!

 YES I have MS, and until they find a cure, I need to learn to live with it.. Not let it take control of my life.. I need to control it..  I need to take charge..

Time to get off the soap box, and live my life the best I can..
just saying. :p

Before you even read this, please understand it is very hard for me to remember what I am typing, and I have to re-read a million times and re-write something that doesn’t make sense.. 
I tend to jump from one thing to another..  So far this has been 2 hours in the making.. 😛
Welcome to my ramblings.. LOL

 Have you ever been to the ‘dark place?’ you know that dark fear that makes you afraid of life, the dark fear that haunts your dreams, or how about the really dark thoughts of how life would be if you didn’t exsist? That is the scarriest dark place. It’s a place I have visited one too many times.  I’ve battled depression for most of my life since I was 13 years old for many many different reasons.. In 1 shape or form, I’ve battled depression.. I have overcome many difficult obsticles and climbed many high mountains to actually love myself and love my life.. It was a very long journey, but I did it!! I met the most wonderful man on this world, my soul mate, I fell deeply in love with him, gave him 2 sons, and I married him. My life was finally complete.  I felt this is where I was ment to be.. ❤ Well, 5 months after my last son was born, I was diagnosed with Multiple Sclerosis. I was 28 years old, with 3 small boys, and a husband I just married a year ago.. I just got a good paying  job, and was to start that week I had my attack.. That was when my life was shattered.. I lost my job due to the symptoms I now was having.. I had no idea what MS was, I knew Montel Williams was just diagnosed with it, but I didn’t know what it did, or if there was even a cure.. All I know is, I felt like I was just handed my death bed warrant and it was to expire.. there was no date to be given when.. just an empty spot saying who knows when it’ll happen, but your going to die from this disease. 
Let me tell you, you will meet that dark place, darker than you’ve ever been to real quick.. it’s like a B rated Horror movie about some scarey Hotel… and your the Star of it.. It’s called “The Dark Place”..  At this Hotel, Once you check in, you can never leave!!  MS has many rooms to hide in, and once it attacks, it will kill you slowly.. No matter what room you chose, it’s waiting for you.. Enjoy the suffering painful life you are now about to journey.. Your life has now ended..
and you know what even sucks more.. each Exacerbation you have, it’s just another Sequal of the Horror movie. Part 1 Part 2 etc etc … What fruckin sucks even more.. I’m the Star of it..
& the Pay sucks.. 😛

 Sure, in time the depression will lesson, with the help of more meds to add to your ever growing list and high costing shrinks, it will someday lesson.. but it will always be there, waiting for you to visit again. and each time you do, it gets harder and harder to leave it.
Like I said.. “Once you check in, you can never leave!”

*sigh*

Yes..
I’ve adjusted to life, I’ve partially accepted that I have MS and I have fully accepted the fact that life is no longer enjoyable.. I’m becoming more and more depending on my crutch canes, still refusing to use them though, and I’m noticing more and more pain by the end of the day. The more I use my legs, and arms, the more pain I’m in..
My boys are in bed by 9 pm and after they go, I’m right in my bed.. Legs hurting and restless.
I rarely stay up.. unless there’s a good tv show on. 😉 even then, I’m uncomfortable..
The heat is too hot and the humidity is insanely high, and I can’t function in this weather.. I live in my cold house with dread of when I have to go outside and brave the heat.. even if for only an hour or so to do shopping, the heat wears me out.. I usually venture out after the Sun has gone down.. When it’s a little cooler for me.. Again, little changes in your life you have to do, just to live comfortably.. Even if it’s the little things in life that are lost, it’s 1 more thing due to MS you’ve lost, and 1 more thing to be depressed over.. Remember,  I’ve LOST alot, and will never get most of it back..Some of it I might get back, but not all of it.. I KNOW what it feels like to have something, then to lose it.. I KNOW what I’m missing out on.. and it sucks to have lost even the simple things in life..
I once enjoyed the hot sunny days, I now dread them..
I once enjoyed riding bikes, I now wonder how long, or even if I can even ride it..
I once enjoyed walking, running, and hiking, I now can only do so for a little while.. and it’s getting harder to walk without assistance.. Hiking is no longer a thought.. just memories..
I once enjoyed my life… I now question it daily.. 
 It’s hard to understand HOW IN THE FUCK AM I GOING TO EVER ACCEPT OF LIVING WITH MS?
How do you expect me to want to enjoy life when it is so hard to do so each and every day.. Would you look forward to waking up every morning to the question, will I be able to walk today? how much pain am I going to have endure today?
well let me tell you from personal experience, It SUCKS monkey balls! 😛

But then I see my husband, and my boys and know… THIS is why I fight to live everyday.. They are why I fight the dark place with all my might.. I might hate having MS, and I know I hate what it does to me, but it will never change my love for my husband and my boys..  They are my reasons for living..

This Rambling is in NO way a cry for help.. The dark thoughts might pop up now and then, but I always work through them and sort them out.. This is just my way of venting.. My way of letting those dark thoughts out.. This shall pass.. 

 

how much more?

How much more of this pain am I going to have to deal with?  By the end of a day, which was a pretty normal day, had to run a few errands, stopped at a few stores, set up tarps for the yard sale, and made burgers for dinner..Sat down to watch some TV and by 8pm, I am exhausted and in severe pain.. My legs are on fire and are soo hurting.. I’m uncomfortable, and restless.. I get nasty and snap at everyone.. I don’t mean too, but damn, there is only so much pain you can hide from someone..
I went to bed early lastnight and just cried.. and cried… and cried.. and eventually, passed out crying..

How much more do I have to go through? How much more can I take? How much more does my family need to see? How much more does my family need to do for me? It’s not fair to them nor me to have live like this..

The other day my MIL knocked on the door, I was on the couch with the boys watching TV.. I went to get up from the couch to answer the door, and my legs gave out and I took a nasty fall. There was a moment of panic and fear flashing before me when I went down.. Got a hold of myself, and crawled to the couch and got back up on it.. The hardest thing about the fall was, my boys were there and saw the whole thing happen, and had to help mom up and get her cane.. OMFG! All my support groups and books, blogs etc etc will never teach you how to prepare for this type of situation.. Nothing can take away the images of your childs face so scared…My poor boys were devistated and scared as hell to see mom fall.. How do you explain to your babies,what is happening to their mom.. How do you explain to them so they understand, this happens with MS, how do make them understand after what they just saw, that mom is going to be ok? Let me tell you….. Holding my boys and crying with them and trying to convince them mom is going to be fine,when I don’t believe the words myself, is not something my heart can handle.. It is NOT something a mother should have to do..

I hate feeling so defeated like this.. 😦 I do not like that MS is winning this battle right now.. I HATE that I have MS..
I ahve always taught my boys, do not use the word ‘Hate’.. It is a very strong word and often is said in anger and is very hard to take back..

HATE:  to dislike intensely or passionately; feel extreme aversion for or extreme hostility toward; detest:

But I HATE Multiple Sclerosis and what it does to us all!

Fight like hell..

Everyday of my life is a never ending battle with MS.. It has been a tiring battle for 10+ years..  It could be from the pain, the discomfort, the losses, or just the fact that you have MS..  o_O
The Battle NEVER ends.. Not even for a day.. and I have to fight like hell to LIVE..

Standing up is sometimes exhausting.. You try pushing yourself off the sofa, and your legs do not want to stand.. Grab for a wall, or anyone/anything near you, in hopes you don’t go down.. 
 I  just want to sit and not move.. So much easier than trying to get past the pain.. Right? I ask myself this all the time..
But… I can’t sit and watch this disease take it all away from me and not do anything. NO MATTER how painful or how tiring it is to get through a day of normal living.. I do it.. I do it for my family.. My husband, my kids and friends..

I fight like hell..
to get up and out of bed in the morning..
to walk to the bathroom..
to make coffee for hubby..
to wake up hubby..
hmm.. alot of my energy is now gone..

I fight like hell..
to get the kids motivated to get ready for school..
to make breakfast and lunches..
to get everyone out the door and to their destinations..
to pick up kitchen..
to sit and relax..

I fight like hell..
to get up and get lunch and do some house chores..
to accomplish a few things..
to sit back down, until the kids come home..

I fight like hell..
to get dinner ready..
to clean up dinner, with help from all my boys 😉

ugghhh it’s 6pm…

I fight like hell..
to do my daily injection..
to get the shot ready..
waiting for hubby to do the damn thing.. anxiety goes through the roof..
it’s done.. *painful*
to not cry..
*sigh* 90% of the time, I cry..

I fight like hell..
to sit on the couch and enjoy some cuddle time with hubby..
to try and not to show the pain..

I fight like hell..
to go to sleep..
to not be afraid of my haunting dreams..
to cry silently and not wake anyone up..

I fight like hell..
not to easily end it all..

Today was the court date so Zack can legally live with his dad. It went ok, but damn my heart was breaking something fierce. So sad..
He’s been living with his dad for sometime now, so it wasn’t a shock or anything. It just sucked knowing he wasn’t living with me anymore.. I miss him alot.. Seeing him only 6 days a month really sucks.. I feel like I was bad parent or something. Like I didn’t deserve to have him anymore. No one asked me how I felt about all this or even cared to ask. YES, I understand he has some point has to live with his dad, I do.. But I guess the way it was done is what hurts the most. Still, never less, it’s not fair.. my heart breaks.

my mind is effin loopy..

I’m not sleeping well, my dreams haunt me, and my thoughts scare me..  My mind is ALWAYS rambling with crazy shit… I have to do this, or shit I forgot to do that,or where is this? and how do I find that?  What if this? or What happens now? Should I do this? or how comes? I lay awake at night and all these ramblings just keep going.. some jumbled, some how stupid is that?..  From one thing to the next.. loopy I tell ya!!..
Even when I talk, I don’t say things right, pronounce them right, or even put a sentence together that makes sense.. I forget things I want to say, or things I should remember, or even things I have done for the past 16 yrs, I forget to do them.. I could be talking to you, and a sec later look at you like I’ve lost my effin head! I forgot what I was saying or what I was going to say next..
 It drains me..  It makes me exhausted sometimes trying to get things right..
I asked my husband one day while he was looking off into Space, what he was thinking about? He said “nothing”. I asked him “how in the world can you be thinking nothing? Your mind has to be thinking something?” He said, “nope, just blank..” This baffled me as you see, my mind never shuts the efff up! NEVER! I would love a day of peace and quiet in my loopy head of mine..
I think this best fits me from an episode of Jimmy Netruon when he makes himself stupid..
You guys wanna see My loopy dance?  I’m loopy, I’m loopy, I’m loopy loopy loopy!!

over did it…

So, I over did it, and pushed myself way to far..  We got hit with a huge snowstorm, and I shoveled. Hubby told me not to, but I had too. So I did..
and well, lastnight, my legs were so exhausted.. They were in pain, and restless.
Went to bed as normal, and just could not sleep. Tossed and turned, fell into a heavy sleep, wake back up from the pain.. Fell back into a somewhat normal sleep, kept opening my eyes, and they’d close again, only to be woken up by my cat..
My ever loving Queen of the House, black tubby cat named Piper, woofed down her food,and puked it back up.. Twice… ugghhh I had to get up and clean it, so I did.. It was a slow process getting up, but got it done.. Went to go back into bed, and my legs gave out and I fell into my night stand.. In the process of falling, I slammed my leg into the corner of said nightstand, my right hand/thumb jammed into my heater, and my other hand bent backwards, and I went down with a big crash..  it barely woke hubby up…He said he only heard a shoving of the stand.. no crash.. LOL
He helped me up, got back into bed and cried myself to sleep for a little while longer.
  My middle son heard all of this and voiced his fears this morning when he got up.. He was a little worried about mom.. 😦 Breaks my heart it’s so hard on my kids.. and that he had to hear it happen..  
I’m ok, a bit bruised and sore.. My leg and thumb got the worst of it.. Big purple briuse on leg, and a small slice on my thumb.. Here’s the bruise..

Off to get some rest for the weekend..

Happy One Year to me!!!!

I received a card today in the mail from Copaxone congratulating me on my One year of Commitment of doing my shots! It was actually Jan 23rd 2010 I started it..
I’m actually proud of myself for staying on it this long.. It’s seems to be going ok.. I have my bad painful shots, but Scott does his best and I love him for doing it every day for me! I love you and thank you for being my rock!