“Be glad you are not in a wheelchair due to a car accident or the like. There are many paraplegics in wheelchairs because of this. This is something they did not ask for.”
This was in response to someone in a wheelchair due to illness. I was like WTF! Are you insane or just ignorant. This person needs a lobotomy… or maybe they have had one already. Do they think we asked for the illness that put us into a wheelchair? I feel as awful for those in accidents as I do for myself and others with a crippling illness!
Really people, think before you open your stupid mouth!
This is an amazing song of true love and commitment! A very special meaning to me…
Chris Medina is my new Idol!
2011 American Idol castoff Chris Medina – the guy who touched everyone’s hearts and possibly made us shed a little tear with his heartbreaking love story about his girlfriend who currently suffers from brain injury due to a car accident – is the first example of the new partnership between American Idol and Universal Music Group. Chris Medina has been given the opportunity to release his debut single online. “What Are Words” which hit iTunes on February 24th is a beautiful ballad, inspired in his AI story, written by Rodney “Darkchild” Jerkins.
Anywhere you are, I am near
Anywhere you go, I’ll be there
Anytime you whisper my name, you’ll see
How every single promise I keep
Cuz what kind of guy would I be
If I was to leave when you need me most
What are words
If you really don’t mean them
When you say them
What are words
If they’re only for good times
Then they don’t
When it’s love
Yeah, you say them out loud
Those words, They never go away
They live on, even when we’re gone
And I know an angel was sent just for me
And I know I’m meant to be where I am
And I’m gonna be
Standing right beside her tonight
And I’m gonna be by your side
I would never leave when she needs me most
What are words
If you really don’t mean them
When you say them
What are words
If they’re only for good times
Then they don’t
When it’s love
Yeah, you say them out loud
Those words, They never go away
They live on, even when we’re gone
Anywhere you are, I am near
Anywhere you go, I’ll be there
And I’m gonna be here forever more
Every single promise I keep
Cuz what kind of guy would I be
If I was to leave when you need me most
I hate the quiet all the time. It’s 105 degrees here and I so want to go outside and get in the pool and just swim. We purchased a 15′ above ground pool 7 years ago. In the beginning it was not a problem getting in… now no can do. I have not been able to get in for about 3 years now. We even purchased a dual staircase ladder to make it easier for me. Alas, it was good for a while. I so miss the sun and even the heat. I miss the water the most. 😦
I truly have become the “Vampire Mom’! The night is my friend!! moooowhaaaaaa
Halloween 2010.
See, I become one at Halloween. Love scaring the little ones!! 😛
Now to ramble… I LOVE Apple Support!! My MacBook Pro power adapter is messing up. Sometimes it charges, sometimes it doesn’t. So I went to Apple support, online, and set up a phone call for this morning at 10 am. On a Sunday even!! The CS rep, Greg, got me all hooked up with a new one coming overnight mail. Then all I have to do is send the old one back in the pre-paid box and I’m done. So glad I purchased the Apple Care protection. I love my MacBook Pro!! The best computers ever… and they’re pretty too! lol
His name is Roger, and he is my hubby of 18 years. We have stood by each other through thick and thin. We have three gorgeous and talented children together. He stands by me every second of every day, which has to be hard at times. I know it must be hard to believe… but I can be a real handful [bitch] at times. 😛
Was just thinking about him and felt like sharing with you!
As I started my new treatment this issue came in to play. On August 23, 2011 I had my first infusion of Tysabri.
My very own Tysabri bagMy very own arm!
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!
The video explains the peril that Halfway to Home is going through.
I have personal experience with this rescue. My good friend Courtney is a volunteer and two of my ‘fur-kids’ are HWTH rescues. If not for Suzanne and her NO KILL rescue, they would have perished either on the street or by the High Kill shelters. I can not imagine life without them.
Dexter and Charlie, my babies!
The dogs at this NO KILL shelter are taken care of with the highest level of love and compassion. They are clean, well fed, up to date on shots, and always spayed or neutered. This is a travesty of justice.
This rescue, Halfway to Home, helps the County and State by taking some of the burden off of the High Kill Shelters. HWTH is a highly respected rescue and has been a #1 rescue at PetSmart. I am so confused as to how and why anyone could NOT renew their permit. It sickens me to think of all the dogs that will now die in the streets or in the shelters due to this irresponsible decision. I truly hope this decision is re-thought out and that their permit is renewed. How anyone with a heart could do this is beyond my thinking. All I have to do is look into my HWTH rescue dog’s eyes to know this non-renewal decision is truly wrong and inhumane. Is this really what Kern County wants to be known for? I hope not…
Please share the video above, donate to Halfway to Home, let these amazing people and doggies know they are loved.
Click the logo to go to their site!
THOSE WHO WANT TO DO MORE are urged to e-mail a message to The Animal Control Commission at animalcontrolcommission@co.kern.ca.us. Lorelei Oviatt, Director of Planning & Community Development Department at LoreleiO@co.kern.ca.us. Scott Denney, Planning Operations Division Chief at ScottD@co.kern.ca.us. Lorine Vasquez, Planner 2 at VasquezL@co.kern.ca.us.
The week started on June 18th. We began our week long vacation to 20 Oaks Cottages and RV Park. We met my parental units in Fresno to break up the long drive. Hung out at the hotel Saturday night and left for Clearlake early Sunday morning. We arrived at Steve’s and my sister Kim’s park around 2 pm. This vacation was also a bit of a family reunion. I had not seen my sister Kim for 6 years or my cousins for 18 years. [since my wedding] We all did the hugs and introductions and all that mushy stuff then went to see the lake.
purdy
It turned out to be unusually hot for this time of year. [figures] The first two days I went outside and hung by the dock to watch my kids go tubing and swim. It sucked that I was not able to get to the boat or even get in the water, but watching my kids have a blast made it okay. The heat finally got to me and my legs swelled up something fierce. By Wednesday I could not go outside during the day anymore. So pretty much slept that day away. This trip was definitely kicking my ass… but it was a good ass kicking and completely worth it! lol
The Familyhaving a blast!my boy tubingSisters!
There are over 200 photos from our trip. It gave me something to do with my cool camera! lol
We left Thursday and headed back to Fresno for the Hotel stay. It was hard leaving the paradise that is is Clearlake, but we had to head home. We left the hotel early Friday for home. It was good to be home, but I missed my family.
BUT, my fabulous week was not over yet. My baby sister and her BF, Don, were coming to visit Saturday. This would be a perfect ending to a perfect week. I got to see my sisters and my brother at the lake and now my baby sister as well. We bbq’ and had salad and tasty asparagus and cookies and ice cream! YUM! We watched Battle Los Angeles. Basically it’s Independence Day with a few changes. Independence Day is a much better movie, but Battle LA gave us a few giggles. All in all it was a great end to a great week!
kids on a trampoline! lolLaura n me!
This week I am paying for all the fun I had, but it really is soooo worth it. My kids had a blast, hubby caught the only fish [was then released], got to see family, took pictures, and for the first time in a looooong time felt some ‘quality’ in my life! It doesn’t get any better than that!
Well, it’s official, my MS has progressed faster than my neuro would like.
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.
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.
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?
Look out Bitch!!
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! 😛
Making it Through the Rain 