Tag: Anger

Ramblings · RANDOM

Tired…

Tracy13 Comments

I’m tired of the pain, tired of not being able to walk, tired of the fatigue, tired of the shakes, tired of the incontinence, tired of living…

‘We reap what we sow’. That is such a bullshit statement. If this were true, I would not be crippled. My girls Ruby and Tina would not be ill. If this were true, rapists, murderers, child molesters, animal abusers would actually be punished for their crimes. They would not be out on parole picking their next victims…

I constantly wonder what I EVER did to deserve this disease. If you believe in ‘The Secret’, I intended it. Well I’ve got a secret for you, ‘The Secret’ is bullshit! I think I’ll write a book on some ‘new’ form of religion. It seems anyone can and people actually follow it… like sheep!

I know this blog is quite random, but my mind is quite random right now. I cannot concentrate on any one thing or keep a thought going for too long. My hands keep shaking and I keep having to go back and fix my typing.

I keep hearing about quality of life. It’s the quality that matters. I have no quality of life. I am imprisoned in my home. Trapped like a caged animal. In my mind I am still able-bodied, able to walk and live my life. In reality, I’m crippled and trapped.

Trapped...

I do not like leaving my home. I feel safest here. My depression is paralyzing on it’s own. I feel lost and I’m terrified. I go to bed each night wondering if tomorrow is the day I wake up and nothing moves. My hands and feet have been numb for days. I can barely transfer on my own to my chair from my bed right now. Where is the quality? I don’t want the quantity…

Why am I here? And, NO, there is NOT a reason for everything!! There is no reason for my MS or the ways it has affected my family! Hope is fading…

Anger · HELL · Multiple Sclerosis · PAIN · Ramblings · RANDOM · Sarcasm

Fuuuuuuuuck

Tracy16 Comments

I know, great title for my blog. Haven’t blogged in a bit and here it is, in your face…fuuuuuuuuuck!!

You may ask yourself, ‘Why?’ I’ll tell you why. It’s now after 11pm and I wanted to go to sleep. You know, lie down, get comfy, sleep. NOT! After 4 minutes of trying to lie down I gave up. I cannot seem to get my legs up on the bed. I get one up the other slides off. I pull on my jammie pants leg and my hand cannot hold on or lift my leg. Now I could scream for someone to help me, but they are all asleep and have to get up early for work and school. Hubby is on the pullout sofa as he snores so bad he wakes me up all night. So, I’m sitting here with tears rolling gently down my face as sleep is not coming yet. Even if I get my legs into the bed it take me forever to get into a position comfortable for sleep. Once I lie down I have to pull each leg up in a bent position or my lower back hurts. As it is, if I do not sit in the right spot before I try all of this, I may end up too high or too low on the bed. I am not able to ‘scooch’ into a comfy position. I get one shot. I guess I’m lucky, as once I do finally get comfortable I’m ready for sleep, as doing this easy task takes all of my spoons. Just getting into bed is a fucking chore and it pisses me off. It’s not fucking fair!!!!!! And don’t tell me it could be worse!! It’s going to get worse so shut your mouth. And don’t tell me it could be worse, it could be cancer… this IS my Cancer!!! It has and will continue to take my life from me. Just in a slower mode.

February 8th, marks the 2007 death of my MS partner in crime, Tina Richardson. Her progressive MS killed her. She got caught between a heavy power chair and bathtub and slowly suffocated to death, alone and I’m sure frightened. She could not move and could not scream. So, do not tell me no one dies from MS. They do every fucking day. If she had not had MS she would not have been in that position. I know others that have passed away due to pneumonia from being immobile and the MS basically killed their lungs. Tina was only 40 years old and my friend and I miss her every day. So fuck you and your,’it could be worse!’

As of this moment, it’s only going to get worse for me and I’m petrified. I am in a wheelchair 24/7. I am tired, fatigued 24/7. I run on fumes every day and try to be funny and crack jokes. I hide behind a smile and most days I wish it would all just end. I have pain 24/7, incontinent at 46 years young. Migraines, weight gain, unable to do the simplest tasks. The next time you feel the need to bitch about running errands, doing the dishes… be glad you can run errands and have the strength to do the dishes. I would trade you in a hot second to be able to do all those annoying tiresome chores. The next time you take a shower, thank your God you can. Even taking a shower is a chore for me and after I usually need to sleep as there goes some more spoons.

I try to keep the pain to myself, me feelings, my MS. This is my blog, and you can read or not. Tonight, all the lil things going on in my life, and then the tip of the iceberg,  not being able to just get into bed, hit me all at once and hard. Seven months, still no bathroom finished, haven’t even seen them in over 2 months. Promises to here then no show, no call. Losing more leg movement and the list goes on… depression has hit and it has hit me hard. Will I make it through this one… Hell yes! I always do. I’ll find my inner strength and pull my boot straps back up and move on. But, now and then I need to let go, and let the idiots know to watch what they say. God help them if they ever had to deal with a real illness… my comment to them will be, “Hey asshole, it could be worse, you could have MS!!!”

 

xx, Tracy...

 

 

Health · HELL · Multiple Sclerosis · Ramblings · RANDOM

Life…

Tracy28 Comments

This is NOT my life… where is my real life? If you find it, please reply here with the location.

I realized that I have not been out of my home for over 3 weeks. I just have no desire, no oomph to do anything. I know it’s not about the Ampyra as I’ve only been on that 2.5 weeks. It’s been so hot here and heat is no longer my friend. When I say out of my home, I mean that literally. I look outside, but have not even gone outside. I have no desire, or care much right now to do anything.

All my kids are back in school, hubby working, so I’m alone all day. I do not drive, can’t work, and sometimes I really feel like what’s the point. I have no energy, my fatigue is off the charts. [even with the anti-fatigue meds]

And please, please do NOT say, “It could be worse.” or “You’re only given what you can handle!” BULLSHIT! This is my ‘worse’. I need help to get dressed, to shower, sometimes to eat when I can barely hold the utensils. I wear my pj’s most days all day as by the time I get up everyone is gone, and it takes too much energy to get pants on by myself. Luckily, I love my pj’s and have many sets. I guess unless you ‘roll a mile in my chair’ you’ll never understand. The helplessness, the loneliness, the depression that sets in. Maybe it’s a ‘healthy’ thing. Usually it’s the healthy ones that makes the above statements. Their biggest issue is what to wear, having a busy day, what to cook for dinner, ‘oh damn’ have to drive the kids around, etc. etc. etc!! PLEASE!! I know this to be true as I was once there and took soooo much for granted. Like ….. walking for instance.

my legs...

I’m tired of always feeling like I have to be shiny happy all the time. My life SUCKS!!! I know, I know, I have a gr8 husband and kids and family and friends…I get that. But, I have no purpose. Without a purpose what’s left. Feeling useless is the most depressing feeling of all. I have not felt like nor have had the energy to make anything for my shop in weeks. My hands cannot hold the tools very well right now. SHIT, SHIT, SHIT!! Who really cares anyways.

EXACTLY!

Blessings and Hope! [still waiting]

Anger · Fear · Ramblings · Sarcasm

Insanity…

Tracy12 Comments

She can hear the laughter and can imagine the smiles on all the faces. It’s a party, a birthday party for her neighbor. She was invited, but she knew she would not go. Not because she did not want to, but because of the chair she could not rise from.

She cried in the shower so no one could see. She is mad, mad at the world. Her wonderful husband feels the brunt of her anger. The old saying, ‘You always hurt the ones you love’, seems to apply. She knows what she is doing, but she can not stop.

She is sad, she is angry. She hears the music next door. She longs to be there. She can’t. She knows they would move things around to allow her in, but she can’t. It is embarrassing, humiliating, to her. She knows no one would care, but she cares. So, she will not go, will never go.

She hides her pain behind her smile, behind her sarcasm. It is not pride as she has no more pride. It is her pain, her pain of remembering how it used to be. She will get through this, she always does. Or does she? She’s not sure.

Pain

Anger

Sadness

Hatred

Envy

She is filled with all of these. Want, the want to walk again. To be able to drive again without fear. To simply stand up without falling to the floor. To be able to hold her bladder. To not have migraines every week. To be able to sit up by herself without help or severe struggles. To not feel guilty for not being able to do things. To not feel pain all over her body. To be whole again. To not be angry. To not be sad. To want to live…

She is insane. Insane because she knows this is her life, but she thinks it will change. She asks over and over, WHY? Insane, because she expects an answer, an answer that will never come.

She…is me. And she wants to live again…

Blessings and Hope!

Ramblings · Strength

In with a bang, out with a whimper…

Tracy17 Comments

This the story of my shower from http://premier-bathrooms.com/showers/

The Refresh $14,995
The Inspire $11,995

Yes, that is the prices of these fabulous showers. So, this is probably why they do not give you any kind of estimate over the phone. Most people would probably hang up, and quickly. Now, this does include any unforseeable issues like bad green-board and clean-up etc. But, what if there are no unforeseeable issues? Same price? Guess so. But wait, you can finance. So, let’s pay triple the amount for a shower. Woot woot. Shit no, sorry. It’s a  shower for fuck’s sake and not even gold lined. Now maybe if it came with a hot towel boy…

So, my question, how the hell do people, crippled people and the elderly pay for these ‘high end’ showers. They most likely get ripped off and have to finance. Not many people have this kind of cash to just hand over.

Oh, but wait! If we ordered and signed within that day, 1,000.00 would be taken off. Well holy shit and slap my ass, then let’s do it!! NOT!!

So, needless to say, I was bummed. I cried for a bit, then got pissed at the highway robbery going on here. At 5pm, I took a Xanaflex and went to bed.

Now on to plan B. If that does not work then plan C, D, E etc. Whatever it takes.

We are going to go to Lowe’s and check out the shower enclosures. If we can find one without a seat or built in shelving in the back, we can get one like that. Then I found an awesome fold up teak handicapped shower chair that we can have installed along with some bars to help me in and out of the shower. Then get a new dual shower head with bar for the hand-held shower head that can slide up and down. It will not be as high tech, etc as the Premier Showers, but it will be just as good at a fraction of the cost.

So, my shower story continues. It will happen, just may take a bit longer than I want.

Life is good!

Blessings and Hope!

Anger · HELL · PAIN

Wanting me to be real…

Tracy28 Comments

WARNING!!!! “F” bomb alert!!

So for many years I hid my pain in jokes, sarcasm and laughter. It was easier for me and less upsetting for those around me. So many people told me, “Be Real” “Tell the truth about your pain” “Ask for help”…

So, in the past year or so I tried this route only to have it thrown back in my face. Now, when I show my pain, being real, I’m told it’s for sympathy, poor me shit. REALLY! Fuck off please. I have never asked for anyone’s pity, sympathy or the poor me pour me a drink bullshit! Yet for years I listened to others pain and tried to help in any way I could. Now I’m the bad person. Again I say Fuck off please.

Then I got the, I’ll show people the real you, I’ll copy and paste emails. Really, go ahead doctor up your emails. you are the only one that will look like a childish buffoon. As for the ‘people’ who talk the shit and tell the lies…come forward, say it to me. But no, you just block me as you know damn well I will say it to your face, no need to lie or go behind any ones back. That’s all of your jobs. And for those who talked all the shit to this person, de-friend me, block, stay the fuck away from me. You are liars and pathetic. So, you all deserve one another. And if it’s who I think it all is, stop emailing me as well with your BS about this said person. Just leave me the fuck alone. Get rid of my email, my phone numbers etc., oh and grow the FUCK up! You all know who you are and you all know the ‘real’ truth.

I truly hate being this person, this angry person. And after this, hopefully these 2 faced ignorant assholes will back the fuck off and move on. I have not changed and am the same person I have always been. Love me or leave me. Ask me a question and I will tell you the truth.

I am sorry for those reading this and seeing me being this angry person, but I am so tired of being certain people’s punching bag. I have enough of my own problems, health and otherwise, so it is time this was said. I will not allow any of you to hurt me and cause me to become ill due to all the stress. And if you feel the need to comment here again, it won’t come through. If any of ya feel the need to email me, it won’t be read. So don’t waste your time or energy. Just FUCK off please.

I know the person I am and the friend I am, maybe you should look in the mirror and figure out who you are. Remember each time you point your little finger at me there are 3 pointing back at you.

I pray for you and hope that one day you will find the happiness and peace you need. I have my peace and my happiness in my family and my real friends. So really there is no need for you or room for you anymore.

When it all falls apart…I won’t be here next time. Once bitten, twice shy!!

And now I am done and will be back to my REAL self free from the toxic people that have no place in my world!

****************

Blessings and Hope!!

Damn it feels good to purge!!!

Fear · Health · HELL

Hell Hospital pt.2

Tracy17 Comments

January 29 – February 4 – Antelope Valley Hospital, Lancaster California. Second Floor East.

**********************

Plumbers?! Yes plumbers! Come on in and see the women sick, half dressed, sitting on commodes, needing help.

I guess a sink was leaking in our room against the opposite wall from me when i was in bed 4 [sink next to bed 1]. So, men [plumbers] were coming in and out of the room like it was nothing. NICE!!!!! Try sitting on a commode with strange men entering and exiting your room praying no one opens your curtain. Or going to use the bathroom whilst holding your gown closed so your backside does not show. Humiliating!!

My husband told me they were talking between themselves through the wall into another room on the other side of the wall fixing that sink as well…REALLY!

What the Hell were they thinking?? Either shut off the sinks until we are gone from the room, or move us to another room while the work is being done. I truly am at a loss with this one. Cannot get my head around it at all. WTF!!

***********************

Below are a few more pics for documentation of  my bruises I came home with.

one of many bruises
thigh bruise
tie off bruises
left hand 7 day
right hand 7 days
right hand day 7
Day 2 - lovely! lol

I have never been so happy to be home in all my life!!

I called their ‘Patient Relations’ today and am awaiting calls back from the director, head of nursing and a CEO!!

***to be continued***

Blessings and Hope!!

Craziness · Fear · Health · Ramblings · Sarcasm

Yup, you guessed it…

Tracy6 Comments

Another ‘no sleep in sight night’ for me. But I wonder…is it because I cannot sleep or because I do not want to sleep? I had mentioned a while back that the night is my haven. It is dark and quiet. [the way I like it] My kids call me momma Vampyre. I am normal. No need to get up and go. No need to do anything at all. The house is ‘asleep’ and I can be whole, if only for a short time. Hubby is buzz sawing in sofa city again. The kids [off school] are quietly playing video games. And, again the big dogs are sound to sleep in here with me. Life, for me, can not get any better than this. As I read this, I realize it  may sound kind of  pathetic to those who do not know me. In all actuality, it is quite awesome. I can hear the occasional loud ‘snort’ from sofa city, and the kids pop in from time to time to get a hug and tell me they love me. That’s wicked cool if you ask me.

If I was well, life would be sooooo much more different. But, I wonder, would it be better? Would I be happier? The initial answer is HELL to the YES!! But, really, would it be? My husband would have a better wife, my kids a better mommy.  So for them, yes, I feel it would be better. Sadly, we will never know. Would I give my right arm for my legs to work again, fatigue to stop, MS to go the fuck away…YUP!! Cut it off, no anesthetic, whatever, just give me back my legs and take the MS back!! Hmmmm, ok maybe use anesthetic. lol I mean, I’m left handed…

I have been watching a buttload of movies and get so depressed sometimes. I hate people that can walk!! Ok, not the people so much, but their ability to walk. I get very jealous. Yup, I said it, I get jealous and yes anger plays a part as well. I’m human, it happens. I’m also honest. When I used to pick up the kids from school, I would sit in the van and cry watching all the moms standing around and getting their kids. Some holding babies or their toddlers. I barely got to do that with my girls because by the time they were born the weakness got very bad. I was much too afraid to carry them for fear of falling and/or dropping them. Even with the boy, I was afraid to fall and/or drop him. By then he was 2yrs 4mos. It really sucked! What they did get, was a mommy home with them all the time. Helping with homework, reading to them, being there for them 24/7. So, sometimes I feel they got more from me than from the ‘healthy’ moms. My time was for them. If anything, hubby got the worst of it having to do all the things I could no longer do. Aw hell, it builds character! lol

I used to get mad as for years I knew something was wrong. I was dx’ed with CFS in 1986. I guess they figured a 6′ tall, thin, healthy woman, did not need an MRI or anything then.  I was working and going to college. No wonder why I was tired. Then I wonder if I had know, would I have had children? Would I have married? My answer, most likely NOT! It’s now a tad late for the what ifs. So, I just keep on keeping on and wear whatever mask is needed for the day. My masks are my protection from the world. Those close to me know when my masks are on [sometimes]. Those not close to me do not need to know. It is better for them they do not see the real pain behind the mask. My way of protecting others I guess.

As 2009 comes closer to the end, I wonder…will 2010 look brighter? I guess the real question is, will I look to 2010 as brighter? Just like ‘how many licks to get to the center of a lollipop’… the world may never know! HA

Blessings and Hope …

Health · PAIN · Ramblings · Sarcasm

Lost…

Tracy3 Comments

I cannot seem to find myself anymore. I feel so lost lately. People think I am all together most days, and most days I try to be. It gets so hard keeping that mask on but most do not want the ‘real’ me. I am sooooo friggen angry and pissed off at this fucking disease. I’m primary progressive and the realization of it just hit me. I am going to get worse. So please do not tell me anymore it could be worse!! It is! I hate feeling like this. I’m not a quitter, not a poor me pour me drink kind of girl. But lately I cannot pull those damn bootstraps back up!

I cannot seem to ‘wake’ up. I am so tired all the time. I get up, get the kids off to school and then lie back down. I want to get up, make jewelry, anything, but I have no energy for it. Just getting in my chair, bringing my computer and my things out to my table is so tiring for me. Man, call me a whaaambulance please! I get so mad when I feel this way. I hate when others whine and hate even more when I do. And here I am doing what I hate. I guess it’s better to write it out here than whine to my family. They have to deal with enough already.

I see all these ‘self help’ articles, books, BS!! They make me crazy. They all say the same damn thing. Be good to yourself, love others, love yourself, blah blah blah… No shit, common sense maybe. Look at your life, change the things that are wrong and work on yourself and your relationships. Find the root of the problem and deal with it head on. What were your dreams? Find them, go do them. WTF!! Not everyone CAN do what they intended. Sometimes life throws youobstacles. That’s when you need to change the dreams you once had. I had dreams, hopes. Now all those dreams and hopes had to change. I look all around for something else to fill those voids. But, being unable to move much hinders those as well. I WANT to work. I hate not being able to. Trying to find a legitimate work-at-home job is almost comical. If I had money up front to pay these jokers, I would not need their stoopid job. Maybe I should write a ‘self help’ book. All it takes is a bunch of BS and a cool cover to sell.

So how does one ‘deal’ and or ‘get over it’? I have heard those lame ass comments more than i can say. “Well you just have to deal with it.” or “You need to learn to get over it”. REALLY!? You get MS or any other chronic condition and you deal with it or get over it. Or, better yet, SHUT UP and do not speak! Easy peasy. Actually I do deal with it, hence my different mask for different occasions. Getting over it is a different story as daily I am reminded by the fact I cannot walk and am so fatigued I cannot get out to my front room in my own home. I am reminded daily when I try to sit up and the pain hits me like a locomotive.

I sit here in a fog, getting hard to even know what to write anymore. I lose my train of thought in a split second. I get a thought but then cannot seem to get it out on ‘paper’ in the same way I am thinking it. My cognitive issues seem to be getting worse, and that is the hardest part for me right now. I am a smart woman and the thought of losing my cognitive abilities scares the shite out of me, even more than incontinence at 45.

So, I just read over this and am shaking my head. Do I publish or do I delete? Do I edit or do i leave as is? Well, I publish and leave as is. These are my feelings right now and this is a way for me to vent them out. So, you ask, how I’m feeling. I’ll tell you, I am not feeling anything…

Blessings and hope!

PAIN · Ramblings

You want real…

Tracy14 Comments

I’m pissy, bitchy, and full of negative energy today. Everything and everyone is irritating me in some way. Some, it is all them. Some , it is all me. I have no patience at all today for ignorance or even the tiniest bit of ‘stupidity’! I have so much to do it seems, but can never find the time or the energy to get it all done. I was always a ‘if it can be done then do it now’ kind of girl. So, now not being able to just do it anymore highly irritates me. I look at those around me and wonder why they cannot just get up and get it done. If I was well, I would. So, why the hell don’t they??

I look at my house and cry. It is not my house!! My house would be clean, all the time. Dusted, vacuumed etc. Now, it is not that way. It’s tidy, but not spit spot clean like I always did it. My yard is awful, grass dead and not many flowers or nice landscape. If I was well it would be amazing like it was at my old house before I got sick. My kids do more than most kids and my hubby is always doing something. But, I still get so angry that they cannot just do the things that need to get done. The things that look like crap around my home. I know that it is my issue, my problem if you will. I am pissed off and mad at myself for not being able to do the things myself. Sadly, I project it on to those around me. I know it is wrong to do so, but it hurts too damn much to know it is my fault it is not getting done. The fucking disease that has taken me from me and from my family and is continuing to take. The greedy MonSter that wants my soul.

Every day it steals more of my life from me. DON’T tell me it could be worse!! It is going to get worse. It’s progressive and I am sick to death of people saying such an asinine thing to someone with a chronic [any] chronic disease. Until you walk, err roll a mile in my chair then please just shut up!!! This is ‘my’ worse. When you make such a hurtful statement like that to someone you downplay their pain. If you have a cold, allergies etc then yes, quit whining as it could be worse and your problem is going to go away. Chronic illness’ do not go away. And most times they progress for the person. So, until you have a clue of what you speak…do not speak!!

This has been eating me up for so many years. I had someone tell me once that it was all in my head. [a relative, not on my side] For once, she was right, well sort of. It is actually on the nerves on my brain and spine, but some are in my ‘head’. If I was the type to put my family on egg shells, I probably would have punched her in the mouth. But, you can’t help ignorance I guess. So I just kind of laughed and looked away. It took all my energy not to scream!

Every day I feel bad. Every day I have fatigue. Every day I have anxiety. Every day I get weaker. Every day I cannot walk. Every day I have pain. Every day I cry. Then…I get up, I put on my mask for those around me, I smile through my pain, I laugh at my shakes, I make jokes about my incontinence, I lend an ear to anyone who needs, I am strong for my kids, I tell my husband I’m ok. Then when the night-time comes, I sit in the silence, the only light from my bff, my Mac. I cry in silence for what has been lost, I cry in silence for the wife and mommy that has slowly been taken from my family, I cry for what is yet to come…I cry.

Blessings and Hope