Living With MS

Discussing all aspects of Multiple Sclerosis, various treatments, including accurate information regarding Tysabri.

Sunday, September 17, 2006

A few short replies to the comments I've received lately...

For mdmhvonpa, thanks so much. Family does help when in a dire situation such as mine, but unfortunately, my two sisters (that's all I have left), they see me as a burden to them, and that's ok, MS is my problem, not theirs...sad really, their loss though, not mine. As for what your neuro told you about MS, they are completely wrong, dead wrong, and their theory re: relapses couldn't be further from the truth...in general, the damage from the disease is ongoing in the majority of cases (this could be by way of silent lesions forming or intermittent relapses with remitting symptoms after time and usually a short course of steroid treatment, and then gets steadily worse over the years (that's why MS is defined as a chronic and progressive disease)...10-15 years later after the initial relapse and then continuing intermittently during that time...it is in the later years when the disease progresses from the 'inflammatory/relapse' stage - to the demyelinating/permanent stage...which is why I personally believe it's best to start Tysabri therapy asap in order to prevent more relapses and disease progression...maybe you do need to seek a second opinion mdmhvonpa, just a suggestion as I am not a doctor (but I could play one on a soap opera called "As The MS Turns")

for Hillerie.....hang in there girlfriend, you'll get your "Liquid Gold" soon, and I pray your recovery begins shortly thereafter...I believe in Tysabri with all of my being...so go get 'em tiger!

for Penny...in answer to your question...ya gotta laugh with me here or I'll start crying....well, I didn't have a choice really, only one person was available...OMG what a nightmare that turned out to be...hmmm where do I start...she's suppose to be available 24/7 (that is what she is PAID for), so I find out today she's not a certified nurse, but a bookkeeper that injured her major hand and can't do bookkeeping for awhile..Striiiiiiiiike 1! Therefore, she has trouble assisting me with my chair transfers, she has no transportation to get me to and from my dr. appts, can't run to the market/pharmacy, etc., Striiiiiiike 2! She wears a hearing aid as she's deaf in one ear so when I'm calling her 6,7,8 times at the top of my lungs, she can't hear me or she's on the phone (which I told her politely 4 times that was not acceptable-I gave her 4 balls as needing a hearing aid is a disability) BUT when she brought it up for the 5th time, I screamed at her 'THAT IS NOT ACCEPTABLE AT ALL!'..she says, "you don't need to scream at me"...and I replied "YOU JUST SAID YOU'RE DEAF IN ONE EAR AND HARD OF HEARING, AND NOW FOR THE 5TH TIME, THAT'S UNACCEPTABLE! AND I CAN'T KEEP REPEATING MYSELF, THIS IS CAUSING ME TOO MUCH STRESS...I DON'T NEED MORE STRESS JUST GETTING OUT OF THE HOSPITAL!!!" Well, 30 mins later she tells me, "I have to take 2 days off this coming week, I'll find you a replacement, but you'll have to pay her separately"...."ummm, nooooooo, I'm paying you for 24/7 caregiver services, if You need to take off, your fee is paid already, so You pay her!" (THAT should have been Striiiiiiiiiike 3, but being the kind person that I am - plus she thought she had me over a barrel), for the 2nd time today, when I needed assistance from the bathroom to my w/c, and I was screaming for her assistance when she KNEW to stay near..she's outside talking on her cell phone..."sorry, that's it, STRIIIIIKE 3! YOU'RE SOOOOO OUTTA HERE-GONE! - immediately...call your employer and have them send a replacement for tonight." You will NEVER guess what she said......ready??? She says, "Can I use your phone? My cell phone battery is almost dead and I need to call my daughter to come pick me up".........my reply, "Well ain't that a shame, you better talk fast to your employer and daughter on your cell phone 'cause you can't use my phone after the Hell you've put me through today...maybe you should have been working instead of yacking on your cell phone all day with your personal calls!"...so, now I'm left to fend for myself against the e.r. neuro's orders until a replacement shows.....please pray I don't fall until then...tomorrow...time to hit the back up resources phone numbers.......ARGGGGG!...I guess I named my Blog correctly, because this IS "Living With MS"-*I guess when life throws you curve balls, you gotta become a switch hitter! Batter UUppppp???????
(((hugs)))
Love, Lauren

A very proud member of www.MSpatientsforchoice.org/

4 Comments:

  • At 8:03 PM, Anonymous Anonymous said…

    I am so sorry to hear whats happened. I'll keep you in my prayers.

    Penny

     
  • At 6:11 AM, Blogger mdmhvonpa said…

    Holy CROW! You wonder how these people even managed to work in the first place. Protestant work ethics or not!

     
  • At 2:15 PM, Blogger Charles-A. Rovira said…

    I agree with mdmhvonpa.

    First, sorry to hear about your sisters. I guess they're not exactly drowning in the "milk of human kindness". (Apologies to Shakespeare. But then the play was Macbeth:-)

    From under what rock did you dig up these worthless HCW (Health Care Workers.)

    A "pretending to be deaf," (you know why don't 'cha? so she doesn't hear your pleas for help,) lazy-assed attendant deserves to be reported and barred from doing this kind of thing ever again, to anybody else.

    Congrats. My blood is boiling right now. I gotta take a chill pil(sner :-)

    I hope you're able to neither forgive nor forget, but to do something about the slattern.

    I was going to wax lyrical at you about my podcast on MS (at http://www.MSBPodcast.com) but now I'm too pissed off.

    And no, you don't need an iPod to listen to my show. :-)

     
  • At 6:42 PM, Anonymous Anonymous said…

    Hi Lauren! You are one inspirational lady! I haven't read everything here, but you know that I have the utmost respect for you. I wish there was something more I could do to help you. But know that I am here for you.

    Take care. You have my phone number.

    Cheryl aka Av8rgirl

     

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