I don’t wanna die, I just don’t wanna be sick anymore!

August 26, 2011 Tracy23 Comments

As I started my new treatment this issue came in to play. On August 23, 2011 I had my first infusion of Tysabri.

One major side effect is Progressive multifocal leukoencephalopathy (PML), which may cause death. This medication suppresses my over active immune system due to my progressive MS, which can lead to this viral infection. I will be monitored for medicinal hepatitis [liver damage] and UTI’s. Now that my system will be suppressed I am more prone to getting other issues.

When getting ready for my appointment we [hubby and I] discussed the possibility of PML. When Roger looked at me and said that this way I can get my wish, to die, I sat open mouthed. I have stated, when in depression, that death is freedom and sometimes I do not want to wake up in the morning, I guess he took it literally. With tears welling up in my eyes I explained that I do NOT WANT to die, I just want the pain to go away. I want to walk again, to be able to hold my bladder, to be able to go out in to the sun, to be able to drive, to not have mental and physical pain… I want to play with my kids!! I will be honest… there are days I do not want to be here anymore. Unless you suffer from a serious chronic illness it is hard to grasp. But, in all actuality, I do not want to die. I just want my life back, a quality of life back.

I’m not even asking for much from this medication. I just want to be able to drive again and hold that bitch of a bladder! 😛 I’m not expecting much, as when I do my hopes are always dashed, so I am just waiting. It’s all I can do. I’ll keep fighting until my strength is gone. I need to be here to annoy my kids for a long time to come. It’s what I live for! lol

I will now go once a month for the two hour infusion. They [who the hell are they] say it can take 6 months to a year to see a difference. I’ve waited this long, so what’s another year or so. My problem is when I want something, I want it now. MS has certainly taught me patience… for the most part! [I try, really I do]

A new adventure is happening, and as always, I will go in head first! Wish me luck!

Love and Light!

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

Family · Multiple Sclerosis · Ramblings · RANDOM · Religion · Sarcasm · Strength

Fight or Flight?

May 21, 2011 Tracy11 Comments

We all know what this means. In a crisis we either fight or we run. Which would you do? Lately I’ve been running or rolling as it would be. And I’m not a ‘roller’! I’ve always been a fighter. And definitely not a quitter, which is also what I have been doing as of late. I know that the fight is inside of me. I was physically attacked many moons ago in front of my apartment building. I fought and the guy ran away. So, I know the fight is there, I just need to find her again. This is not to say there will be many days I want to quit, but I am looking for my little fighter again. I know that if my PPMS were a person I would have kicked the shit of out her a long time ago. Fighting the MS will be tricky as ‘she’ is not a tangible being. But when has that stopped me before?

The past week has been very rough and it is not over yet. Hands still shaking, legs still weaker than normal, transferring is tough, fatigue is kicking my ass. I’m still quite depressed, as being in this fucking chair is really getting old. The first thing I see when awakening is my chair and it is the last thing I see when I go to sleep. A HUGE reminder that I am crippled. I think it is so hard because I know what it is like to walk, to be able to go when I please, have Independence… ALL of which was ripped out from under me, literally!

I am hoping the ‘fight’ in me comes back. I cannot make any promises as I have no idea what each day is going to bring. I am terrified of going to sleep as I never know when waking if my body will have finally succumbed to the MS. Will I wake up totally paralyzed? What then? I know there will be days and blogs where my pain will come through like a punch in the face, so be prepared.

I only have myself and my inner strength to count on. I know I have family and friends, but this fight is solely up to me. No one can ‘fix’ my emotions but myself. Some have suggested counseling… sorry but talking to someone in high heels and who is healthy is NOT for me. I do not care how many books they have read or how many people they know in a wheelchair, they are not living it so they have no clue! This is FACT not fiction!

Well the hands are getting weak and my head is staring to nod, so I’m out!

But, before I go, good luck with the Rapture! I know I’ll still be here tomorrow as will everyone else. Well, maybe not the quacks that believe this, hopefully they will go! 😛

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

Being in a Wheel-Chariot…

May 3, 2011 Tracy7 Comments

SUCKS!!

Just thought I’d share! 😛

nuff said...

Hope · Multiple Sclerosis · Ramblings · RANDOM

My Crippled Access bathroom…

March 26, 2011 Tracy12 Comments

My bathroom is now useable and the tile is all done and my shower is ready for my crippled ass!! We still have to paint, and replace the toilet. [adding a toilevator for extra height] Just basic finishing touches. I am getting frames for around the toilet and shower chair for extra security and to make it easier for me to get up off the seats. The commode is going buh-bye!! Maybe we will have a ceremonial bonfire! Until the seat frames [rails] come I still need help showering. Luckily Roger ‘likes’ this chore! lol The perv! 😛

Now that we have this out of the way, it is time to move on to the next chapter of fixing up my home 101. lol It’s de-clutter time and make my home more cripple friendly. Mainly, I want to get rid of the junk, and make my home my castle. 😉 We are going to paint the interior, exterior, hopefully tile the rest of the main walkways and into the TV room, weatherstrip doors, fix dents in walls [no idea how those got there!] It’s not all going to happen overnight, but it will happen. Sadly, patience is not a virtue I have, but I am learning…

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.

Multiple Sclerosis · Ramblings · RANDOM · Strength

MS Walk 2011

February 11, 2011 Tracy2 Comments

My personal page and our team, Tracy’s MSkaters

I ‘roll’ so someday a cure can be found. Being trapped inside your body is something no one should ever have to face. It is my hope, my dream, that the cure will be found and this MonSter will never strike another person.

If you are able, please donate to my team. I know how hard times are right now, so thoughts and blessings are always welcomed!!

Please help us find a cure.

Health · Movies · Multiple Sclerosis · Ramblings · RANDOM · Sarcasm

Here I sit…

February 10, 2011February 10, 2011 Tracy4 Comments

broken hearted… lmao!! No, not going there!! This is not a public restroom wall!

Seriously, here I sit at my laptop updating, playing in FB, getting iTunes ready for hubbies new iPhone. I just did the kids breakfast dishes and got some jewelry things cleaned. Now what? I’m staring at my blog screen with nothing. Roger will sometimes ask me what I’m doing. Well, just ran a marathon, went grocery shopping, took the kids here and there, did laundry, etc. Then we just laugh. I used to do all of this, minus the marathon! lol I so miss doing all the boring irritating things.

So, here I sit deciding what wonderful things to do. I can go back to bed and watch tv, or go sit in my cool lift-chair and watch tv. Or, I can sit at my design table and play on my computer. hmmmmmm Decisions, decisions. I think I’ll go medicate and lie in my lift-chair and watch movies or something. Oh the life a cripple!!

Happy, Happy, Joy, Joy!

Hope · Movies · Multiple Sclerosis · Ramblings · RANDOM

Ampyra?

February 9, 2011 Tracy4 Comments

I’m not so much into the Ampyra. Tried it for over 5 mos and sometimes it seemed as if my legs were weaker. Now this does not mean it will not work for all, just not so much for me. I had high expectations, but srsly, it is more for the less severe forms then the progressive forms. Might be only my opinion, but whatever. I know my MS and it knows me.

I really wanted it to help, but oh well whatcha gonna do. Keep waiting for them to finally get a useful medication for the serious progressive forms. I think that finding help for us would really help the less progressive forms.

So I wait, and pray that they find something for PPMS before I get so bad nothing will help.

On that not, off to watch ‘White Girls’ and omg they crack me up. Love the Wayans!!