5am… Oh Mr. Sandman!

August 3, 2013 Tracy6 Comments

Nights like these are beginning to piss me off. Mr. Sandman must have lost my freakin’ address. My night has been watching movies and trying to sleep.

I realized after reading yesterdays blog, I really haven’t gotten out of bed for a while now. I’ve been thinking about the ‘why’ I haven’t. If I am truly honest with myself, I know the reason… “What’s the point?” I could get up and sit in my wheel-chariot, but then my ankles become kankles, and I really hate that. I’m no longer able to drive, so I can’t just get up and go out. Unless I have help, I can’t even get out of my bed to get in my chair. So, again, “What’s the point?” I feel safe here. I really hate being out in public. I’m in a body I hate, and frankly I don’t like people. I’m not me anymore.

Some might say I’m feeling sorry for myself. Well DUH! I’m fucking human, of course I do at times. Anyone dealing with a progressive illness is lying if they say they never feel sorry for themselves. It’s human nature. I also feel anger, sadness, emptiness, loneliness, and the list goes on. My body is broken and it’s messing with my head. I try so hard to find the ‘positives’ of life, but when you can’t even sit up in bed without someone pulling you up by your arm, positivity is hard to find. Then the fear sets in. Will tomorrow be the day I wake up and my body no longer moves at all? Every night that thought crosses my mind. I’ve lost 2 dear friends, younger than me, to complications of PPMS. It’s fucking scary. And please don’t anyone say it could be worse! This IS my ‘worse’. Death would be easier. I’m so tired of fighting this all the time. But, I’ve never been a quitter, so death is not an option. But, I’m just so fucking tired!!

I know some of my emotions right now stem from the loss of my mom. But honestly, there’s nothing wrong with telling it like it is… the cold hard truth. So many people with with debilitating illnesses keep their inner thoughts to themselves for fear of what others might think. Yes, I think of death, and how much easier it would be. Will I go there? NO! But, the thought is in my head at times. It’s much healthier to talk about it then keep it bottled up inside. People with disabilities unite!! It’s okay to be sad, it’s okay to feel sorry for ourselves, it’s okay to be angry as hell. We need to vent it out in order to heal our minds. Honestly, if the ‘healthies’ and/or others don’t like it or want to hear it, fuck them! They’re not worthy of us in the first place. You really do find out who your try friends are when illness [serious illness, not a cold 😛 ] strikes.

People tell me all the time to think of the good things; family and my friends who love me. DUH, I know this, but I’d also like a little quality of life. No one but me lives in my body. No one but me feels my emotional and constant physical pain. My body no longer works, I can’t do anything without someone there to help me. My independence is gone. When my kids are in school and hubby is at work and I’m home alone, it’s terrifying. I can’t get out of bed or do anything for fear of falling and hurting myself. It feels like i’m in jail.

There’s a line from one of my favorite movies, Last Holiday, that sums it up. “I would like to be cremated. I spent my whole life in a box. I don’t want to be buried in one.”

I know kind of depressing, but my feelings in a nutshell.

I’m not getting better. I will keep progressing. Scary part is that progression at this point is heading towards total paralysis. Oh joy!

I am looking in to a new neurologist. After 16 years with the same one I feel he’s getting a bit lax. I’m also looking in to a wheel-chariot that has a reclining and raising option. I’ve been looking for clinical trials for PPMS, but most say the patient needs to be able to walk 20 feet to qualify. Are you fucking kidding me. I even looked in to a trial for incontinence, and didn’t qualify. SERIOUSLY!! I’m the incontinent Queen for fucks sake. If they can help me, they can help anyone! 😉 There’s all kinds of new medications for RRMS. Shit, if they could find a medication for the progressive form, that works, they could control RRMS completely. Get on it you researching fools!!

Well peeps, it’s now after 6am. Think I’ll find another movie to watch. Preferably something boring that will put me to sleep. Where’s my ole economics professor when I need him. lmao

A quick note, I’m reading some cool spell books. Who knows i may be able to cure myself. I believe in the power of nature and balance. Damn, I’ve tried everything else, it can’t hurt to give this a go. I’ll keep you posted.

Ta-Ta for now. Love and Light

Anger · Craziness · Family · Fear · FUCK · HELL · Multiple Sclerosis · Ramblings · RANDOM · Religion · Sarcasm

Oh what a World!

February 6, 2013February 6, 2013 Tracy19 Comments

Life can seriously get you down. My newest issue, it’s the fear to go outside of my own home. I hadn’t left my home for months, and last time I left I had a little bit of an anxiety attack in my car. The day went downhill from there. I knew better but my car wouldn’t start my first thought was just stay the fuck home! BTW, if my words a little off because I’m using the speech program as it’s been really hard to type and honestly the speech programs aren’t what they say they are. I do know proper grammar, But sometimes what comes out on here isn’t what I actually said. And honestly, much too tired to go back through and fix it all so please bear with me!

My biggest issue, with not being able to go outside, is my baby sister is getting married in April at her bridal shower is this month. I would never miss it for anything! They may have to drug me to get me in the car to go, but all good as again I wouldn’t miss this for the world.

Wow! As I just read this over there are so many mistakes, and again I am so sorry for them but I really cannot type right now.

I know I’m not feeling well when I just do not want to get on the computer. Facebook is the last place I want to be right now. For a while, I think I’m just going to do some blogging on here and maybe share Facebook but not get involved too much right now as I really need a break, for me. All I want to do lately is to sleep. Depression maybe, yeah think so! I am working on getting out of my house slowly but surely. I actually went out the day after everything went crazy with my husband, and it was a little easier although I did want to get back home quickly!

Unless you have an anxiety attack, a real anxiety attack you have no idea what happens. I am so sick of the people that tell you to just breathe through it. Well you can’t fucking just breathe Through it! I had to leave my room at night out of my cozy bed and asleep in my recliner as my anxiety gets so crazy I do not want to wake up my husband. Then the breathing gets really erratic, start to sweat, the tears flow, and I just want the world to end! If it wasn’t for Valium I probably would’ve pulled all of my hair out of my head!

I hate how this affects my family, but it’s so hard to just let it all go. I try to keep it to myself, but it’s very very hard to do so. I know I have love I have friends and family, but in all honesty most people don’t want to hear about it. Most people don’t understand what it’s like to have your life taken away from you and end up in a wheelchair. Unless you’re in that situation, you really have no idea.

They say things happen for reason, I think that’s bullshit! If it were true then all of the murderers, the pedophiles, and scum in prison, would be stricken with these illnesses. So I’m sorry, but fuck that bullshit that things happen for reason!

Does it sound like an angry? Well I am angry, what’s going happen when the day comes that I wake up and can’t move, I wake up and can’t speak. Who is going to help then, God! I don’t think so.

…………

Peace out kids!

Fear · FUCK · Hope · Multiple Sclerosis · PAIN · Primary Progressive MS · Quotes

Down but NEVER out…

May 10, 2012May 10, 2012 Tracy10 Comments

Was hoping today would be better. The legs are better, no swelling. Sadly woke up this morning and had nothing. Couldn’t hardly move a muscle. Took me some time, but finally got my tush transferred to my chair. Now, I’m a skeered to try and transfer back to my bed. Falling is always a fear. I’ll eventually muster up the strength to get back in to my bed. I’ll never quit trying, mainly due the fact this chair is hurting my ass. 😛 Wish me luck!

Fuuuuuck, I’m so bored!!!

I’ll leave you with one of my favorite Quotes;

When the World says, “Give up.” Hope whispers, “Try it one more time!” – anonymous

I will always keep trying! Peace out! xx, Tracy

Anger · Fear · FUCK · Health · Multiple Sclerosis · Primary Progressive MS · Quotes · RANDOM

MS MS go away, don’t come again on any day!!

May 9, 2012 Tracy10 Comments

Grrrrr, another day in bed. I was getting a couple of things ready to ship out and bam, leg pain. The swelling has gone down considerably, now the pain. So, do I work through the pain and chance the swelling coming back… or do I get my MS ass back in bed. YUP back in bed, legs elevated! Bleck!!!

I guess I should be grateful that the MS allowed me a full week of creating and being out of bed. But, I’m not. That week is now causing me to be down and out. Kind of uncool!! There it is, MS is UNCOOL!! 😛

It took me almost 4 minutes just to get off the potty. Keep falling back while trying to pull up my pants. At least I didn’t pee-diddle myself! That’s a plus!

Now, I will try and find a good movie, get all the doggies in place on my/their bed, take some Norco and chillax…

Oh Happy happy joy joy!!

Y’all have a great one, if you need me I’m as close as my bed!!

Now, go buy my jewelry!!! lolol

And remember…

Peace out!! xx,Tracy

Fear · FUCK · HELL · PAIN · Sarcasm

The Face of Dog Fighting!!

April 11, 2012April 11, 2012 Tracy9 Comments

This is Nathan.

This is from toanimalrescue

04.10.12 NATHAN…this is what a victim of dog fighting looks like. Just picked up from the FW shelter and on the way to the vet. We are full , full, full but we could NOT turn away from this dog. So we will be asking for all the help we can get. Here is my update to the shelter posting: Judy Obregon from TAO rescue has picked up this dog and he is currently on the way to the vet. She has named the dog Nathan and she will be updating soon, but now transport to the vet and vet attention takes priority. His condition is shocking, Judy says he looks to have lost a nostril . We are asking for pledges to be honored and donations to be made to him either on the TAO wall donation button,which is at the top of the page. www.facebook.com/taoanimalrescue Initially, we requested that donations can be made directly to the vet but his office has now been inundated with calls asking about his condition, but few donations so the vet has now asked that donations be made directly to us or mailed to him. Let us know if you need his mailing address.. Please keep in mind that he may need to see another vet for surgical repair . Thank you.

——————————————

Nathan didn’t make it through surgery.

RIP Nathan, I’m so sorry the humans did this to you!

Does this make you angry? Does it make you care? Does it make you sick to your stomach???? GOOD, I hope it does!! Wake up World and help put an end to Dog Fighting!! We NEED to take a stand.

If you know this is going on near you, call the authorities! Turn the sick, small minded, weak, cowardice, psychopaths in and make them pay for this horrific crime!!! The laws need to change. The monsters need to do serious time. Michael [small dick] Vick was only charged with illegal gambling. Even though, with his own two grimy hands, he took the life of hundreds of dogs. Beating, drowning, shooting them. And then he got his job back in the NFL!!! WTF… how is that possible. Guess being rich gets charges reduced eh!!

When I saw Nathan had passed my tears would not stop flowing. PLEASE, I beg you, get involved!

“The greatness of a nation and its moral progress can be judged by the way its animals are treated.” -Mahatma Gandhi

How great is your Nation???

Anger · Fear · RANDOM

If I squeeze my eyes shut and open them again, will I finally wake up from this nightmare?

July 25, 2011July 26, 2011 Tracy4 Comments

Saw this on FB and it is how I feel most days. In my dreams I am able bodied and walking friendly. Then, I wake up. This past Friday showed me how crippled I am really am. I HATE my wheelchair but realized it is my life now. On Friday I was getting the laundry ready, turned on my WC, and nothing but blinking lights. I kept turning it off and on like a mad woman, and the same thing happened over and over again. I was completely screwed! Stuck in my room with no way to move. As the tears slowly slid down my face I looked up at whatever higher power is up there and quietly asked, WHY!? At that moment I realized how dependent I am on my WC and it is my only independence, if you can call it that. Then the anger hit and the quiet why turned to an angry why. I had no way to move myself and get from where I was. My son was in his room with his ear buds in and could not hear me cry for help. My girls were not home from school registration yet and I had no phone to call anyone. After 10 minutes or so the girls got home and unlocked my wheels so they could roll me out of where I had been trapped. This is my life, my nightmare!

So I ask… If I squeeze my eyes shut and open them again, will I finally wake up from this nightmare?

I think not…

Fear · Hope · Medical · Multiple Sclerosis · Ramblings · RANDOM

My Neurologist appt. 5-26-2011

May 27, 2011May 27, 2011 Tracy7 Comments

[re-post from fab40]

Well, it’s official, my MS has progressed faster than my neuro would like.

frown

There are no real medications out there yet for primary progressive ms [ppms]. Most of the medications are for relapsing-remitting ms [rrms].

I asked what, if anything, can help me regain any strength or any movement in my legs. Even transferring from my chair to my bed or the tinkletorium is getting quite hard.

I had mentioned a medication last year with some serious side effects, death being one. There have been incidents of patients getting an infection called progressive mutifocal leukoencephalopathy [PML]. They have found that these people may have had PML before starting the medication so that may be the reason why.

The medication is called TYSABRI http://www.TYSABRI.com

It has not been tested on many patients with the more severe form like my ppms. My neuro has patients on it that have ppms and they have regained some to a lot of strength back. It can take 6mos to one year to see any results. It is a 3 hour infusion every four weeks 40 mins from my home.

I have a friend who uses it and he said his life has changed for the better, and he has been on it for over two years.

The referral was called in directly by my neuro so I should find out if I can try it in the next week or so.

I’m scared to death, but not trying something is even scarier. It’s only a matter of time before I lose complete mobility and am bed-ridden, so if this might help me to even be able to go back to using my walker in my home, it will be worth it.

Wish me luck my friends! heart heart

Anger · Family · Fear · Multiple Sclerosis · Ramblings · RANDOM · Sarcasm · Strength

Giving up…

March 25, 2011 Tracy32 Comments

Those two words are not an option for me. I have three wonderful children that need me and a husband that loves me. So how does one deal with the emotions when their whole soul says, I want the pain to stop?

I wish I knew. Last night it felt like my bones were trying to some through my skin. I know no other way to explain it. My skin was crawling and my emotions were flying all over the place. What was I doing when this happened? Trying to go to bed. Yup, that’s it, just trying to sleep. WTF!!! Roger was trying his best to comfort me, dd#3 was scared and dd#2 was lying in bed holding on to me and crying.

I got so pissed. This MonSter isn’t only screwing up my life, it is killing my kids. I screamed at God, I screamed at the MS. If either were human in front of me, they’d be dead now!! If you wanna mess with me, go for it, but DO NOT mess with my kids. My faith is gone and nothing anyone says is going to change that for me. I believe in a ‘higher power’ but that’s it. And do not try and preach it to me… please. I’m no longer in the ‘politically correct’ mode. Okay, I never really have been, but now you’ll just piss me off.

I have no issue with the ‘believers’ out there. Keep it to yourself and we’ll get along fine. Push it on me and we will not.

I’m angry, I’m depressed, I’m fat, I’m lonely, I’m in pain [emotional and physical]. It’s not going to go away like the flu or a cold. I deal with it as best I can. I do not want to hear about that person with MS who ran the marathon, or any other success story. Not to be rude about it either, but they most likely have rrms and are in remission and have the funds to be able to do these things. I’m not and I don’t. I’m happy for them, but do not want to be compared to them. We are ALL different in our disease.

I am and have always been a fighter… MS HAS won the battle, but the war is still on!

Fear · Multiple Sclerosis · PAIN · Ramblings · RANDOM

Broken

March 18, 2011March 18, 2011 Tracy24 Comments

That simple word is so powerful. Broken, how do you fix it? I’m not sure, but my body is broken. The depression of late is paralyzing along with my MS. Just typing is hard as my hands just want to curl up and go to sleep. My legs have failed me just as my mind is going. My thoughts are scrambled and I cannot find the focus. I’m tried of depending on people, I’m tired of needing help. Dressing myself causes anxiety and pain. I’m so tired of being… tired of being.

Broken like shattered glass on the floor that crunches under your shoes.

I do not know how to fix all the breaks. I’m tired, so tired. I’m not strong and I cannot fake it any longer.

Anger · Fear · Health · Ramblings · RANDOM

Money, Money, Money…

February 8, 2011February 8, 2011 Tracy8 Comments

They say money can’t buy you love, happiness, etc. I beg to differ, but not in the way most would think.

In my situation money would buy ‘comfort’. Money will not cure me, but it would make my life and my families much easier. You see the stars with MS and other chronic illness’. Montel has his own cook, nutritionist, physical therapist, child-care. Trust me, if I had that it would make life much easier and less stressful. So in this case, money would buy ‘comfort’! Most of he people on these shows with chronic illness depict the success stories. The ones who run the marathons etc. Their MS is the less severe form, and being in remission is a great thing and I am happy for them. But, where are the stories of the those with the severe forms, who have families and live on modest incomes with no extras like a cook, a nutritionist. You get the idea.

There are treatments out there that insurance will not cover, so in those cases money would buy me better health care.

Not sure where this is coming from tonight… maybe because I tried to take a shower in my partly done shower and realized it is not going to make that much of a difference. Roger got the seat and a couple of bars installed, which help. But I have to be careful as it is not all grouted and we have to be sure the water does not get all over the place. The shower itself was fabulous the aftermath, not so much. I am coming to the realization that even bars and a higher chair do not help me get up. My legs are near useless and I sat there and cried, why??? This was not supposed to be my life. Why not strike those who commit heinous crimes and those who do to want to be a giving part of society. WHY? And yes it is my right to ask why. There is no reason for this. I did nothing to deserve this, as many of my friends did nothing to deserve their illness’. So why?

I’m not naive and I know there is no answer for this question.

I sit here, again, wondering if I will be able to get in to my bed tonight. Will I be able to get up easier in the morning? I know these answers will not be ones I want to hear. I hate feeling this way. I am no quitter nor am I a whiner. But as of late I read people complaining about their colds and allergies and runny noses and want to scream at them, “Your piss ant issue will go away, mine wont!! So shut the fuck up and get over it!!” And that is not me either. I hate being this bitter, this angry. I think from all the times I hold it in, it is finally too much to take.

I’m lost and am slipping away from me more and more and I’m scared…

As Always…