Archive for the ‘MS (Multiple Sclerosis)’ Category

So… life with MS is not always easy to live with.. There are days, where things are just getting harder to deal with.. Not being able to walk long distances, energy to do simple house chores, or even cook dinner.
It was starting to drain me… Emotionally, and physically.. I was drained..
Recently, I had one of those screaming/shouting moments where I voiced how much I hate having MS and what it does to me the other day to my husband. I sat in bed, and did one of those sob shaking, hiccuping, runny nose cries where is just pours out of you. and I mean… pours out of you…
I vented every hate and every pain and every fear I was having at that moment. I screamed my darkest fears/thoughts, I didn’t hold back.. I couldn’t hold it in anymore. I let it all come out…
I admitted that I wanted to give up…. I was at that moment in the darkest corner I have ever been in, I just wanted the pain to end.. I wanted it all to end…  I was giving up…
and then the tears fell silently..
But they weren’t my tears.. They were my husbands.
He said these words to me, “I may not know the type of pain you are in, and I may not know what it feels like, but I’m living it too. I’m here with you everyday since the beginning and I haven’t left your side.”
We sat what felt like for hours, in each others arms and the tears just fell..
As he fell asleep, my mind did a lot of thinking. He was right. I am not the only one who is going through this. My whole family is. My husband, and my children see this every day. They live it too.. I was caught up in a selfish moment, where it was me myself and I….Yes I experience the pain, but they experience so much more.. and I need to remember that.. it’s not just me who suffers from MS, it’s all of us..
I am truly blessed to have such a wonderful supporting family to help me continue this never ending battle with Multiple Sclerosis…

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Saturday April 28th I noticed some numbness feeling in my left side of the body. By Monday the feeling started to be more uncomfortable. I started applying different pressure to my body. Working down my legs.
By applying some squeezing, it was a very dull numbness, took longer to feel the pain than it did on the the right side. The pins and needles feeling was dull, not as prickly feeling as before. My left side now has a heaviness to it. I have to use my crutch cane to assist me in walking. It takes me a bit to get up and move from one room to another. Very energy draining.
I have the urge to go pee, but when I sit to go, (numbness feeling in legs/butt area) The sensation to go is there, but it takes me a minute to go. :/ I usually have a problem holding it in..
Some spots on my body are VERY sensitive to the touch. It feels like someone has punched me in the arm. Sore to the touch. That soreness feeling is on my right hand, and on the nook of my inner arm, elbow area and goes up my right arm.
I have a heaviness in my left hand/arm and in my leg.
My balance is gone, and it’s hard for me to walk straight. I have a restlessness to my arms and legs now. The pain is somewhat tolerable, but is constant, and is hard to sit still.
My old symptoms, seemed to have heightened a bit. My vision is all wacky in my left eye again, and there’s the dullness to color.
Between my husbands schedule, I can’t make an appointment to see my Neuro until the 10th, it’s Scotts 1st day off. Crossing fingers when I call Monday they can get me in.
this Flare up is a nasty one..

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The sadness I saw in my sons eyes yesterday just near broke my heart. 
A couple of weeks ago my middle son Andrew came up to me while I was in my room.
He started off by simply stating he didn’t like me having MS. So our conversation starts full of questions from him, about the why’s, how, will he get it, when will I be in a wheel chair etc etc..
Now this is the 1st time with him that I actually had a serious conversation about MS.. He’s been told about it, knows I’m on meds, and what they are for, but this time we really talked about it.. About what it does to one’s body, how it’s totally unpredictable, and we never know what or when it’s going to happen. That was hard.. My oldest understands, my middle one now does, but my youngest still doesn’t understand.. He just knows mom is sick from MS.. 
 Last night I was lying on my bed waiting for Scott to come in from letting the puppy out to do my shot, and Andrew laid on the bed next to me so sad-looking.. 😦
I asked him what was wrong and he said, ” Mommy, I wish you didn’t have MS.” 
Now we have had this conversation many times before, some of them full long talks others, just short ones.. But this one I knew was going to be different..  his eyes were filled with such sadness…It took all I had not to cry.. So we had another conversation but this time, why did his mommy get MS? Why doesn’t the bad people in the world get the suffering?”
Coming from an almost 13 yr old, the innosence of his statement made him so much older..
He notices things more, I find him watching me now and then to make sure I get up ok, he’ll ask if I need my crutch or if I’m feeling ok..
I worry for him and how this is hurting him.. He’s still a child and should not have to see his mother go through this.. 😦 
Just breaks my heart that my children have to live with MS also….

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Usually by the end of the day, all my energy, emotions, ambition, etc.. is drained..  As of late, it’s drained the minute I get up. My body feels so lifeless, and hard to function. I just want to curl up in bed and not move.
I’m having an allergic reaction to my Gabapentin meds, a nasty rash under my left breast. So I have to stop taking them. Fine with me, they weren’t helping anyways..  But it’s the added stress of MORE medical shit gone wrong with me is just exhausting me..
Having to live with this disease, and carry so much of it quietly so you do not  worry your loved ones around you, is emotionally tiring.. I feel as if, my body mind and soul just wants to peacefully rest…

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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…

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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

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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

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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!”


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.. 
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.. 


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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!

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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..

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