Made contact with my Senator

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NiNi53
Veteran Member


Date Joined Mar 2011
Total Posts : 816
   Posted 11/23/2011 6:25 PM (GMT -6)   
Hi everybody, I am happy to say that withing 48 hrs from me contacting my Senator, I received an email back. Now true it was very polite and offered me a sit down to go over the issues I was speaking about, which of course it about how many of us are having difficulties getting the meds we need to have some quality of life.
 
I also have an extensive list of the rest of the people we helped put in office, I am going from local county representatives to the big boys and girls.  I will leave no stone unturned.  I am determined to follow thru with this campaign we so badly need to have our truths out there in the world, not to continue to be treated like junkies looking for a fix.
 
I will keep all posted concerning how far I have gone and how far I am going.  Thing is, this is Maryland, and so for everyone else, please I am asking that you also contact the people you have elected to office.  If we dont stand up and be counted, well we wont be counted.
 
Ok, thats is for now, I am starting and not stopping until I get the answer and media attention that the few people that abuse the system are punished, and we get to put faces on those of us who live with Chronic Pain Disease.
 
Take care all and enjoy your thanksgiving and try to remember how much there is to be thankful for.
Kathy/nin
degenerative disc disease, fibromyalgia, osteoarthritis, neuropathy, lumbar laminectomy july 1998 no help, rechargeable neurostimulator unit low right back w/lead wires to left side and right leg unit not working just sitting there.i am 57 years young in may will turn 58. i have 2 grown daughters, 25 and 29. i have 2 grandchildren, 9 year old grandaughter and 5 yr. old grandson

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16796
   Posted 11/24/2011 12:18 AM (GMT -6)   
Woohoo Kathy, you go for it. I am very proud of you for taking this issue on, however, I feel you will make a very good spokes person too. Please keep us informed here as this progresses along.

Take care.
Moderator Chronic Pain Forum

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 11/24/2011 1:01 AM (GMT -6)   
keep up the good work, kathy, you are on a roll now!! I found my Senator easy to reach, and he really did take the effort to help me at the time, and his personal followup was excellent.

david
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06, 2/11 1.24, 4/11 3.81, 6/11 5.8
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/10

Jim1969
Veteran Member


Date Joined Jul 2009
Total Posts : 2042
   Posted 11/24/2011 1:35 AM (GMT -6)   
Good deal Kathy.

You seem to be getting better results than I am with any of my senators and reps. Most of the time I hear nothing back at all. Once is a while I get a canned message that basically says "Thanks for contacting me. Your opinion is valuable.......". So far I only have gotten one real response and that was to say "That is out of my hands."

At this point come November I know a bunch that isn't getting my vote.
2 confirmed herniated lumbar discs. Spinal Arthritis. Spinal Stenosis, diabetic peripheral nueropathy.

CRPSpatient
Veteran Member


Date Joined Mar 2011
Total Posts : 1276
   Posted 11/24/2011 3:21 AM (GMT -6)   
Good for you Kathy,

I have been thinking about doing a similar thing here and you've given me some inspiration to try, my friend. There are NO meds here actually approved for use in treating neuropathic pain - hence Lyrica, Neurontin, Cymbalta, Topamax, etc., are not available on the Pharmaceutical Benefits Scheme and cost an absolute fortune for people with NP unless your doc is willing to lie and grant authority scripts saying that you suffer from epilepsy, depression, migraines, or whatever. The Targin I've just been put on is another example - not PBS listed at all, even though it could make an enormous difference to a huge number of CP patients needing long term treatment with narcotic meds.

Best of luck and please keep up posted!

Laura
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bone spurs, bursitis, carpal tunnel syndrome, osteoporosis, osteopenia.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Midodrine, Somac, Cipramil. Have SCS, intrathecal pump with baclofen & bupivacaine and doing physio

NiNi53
Veteran Member


Date Joined Mar 2011
Total Posts : 816
   Posted 11/24/2011 5:38 PM (GMT -6)   
Thanks all for your wonderful words of support.  Laura, I am so sorry to hear something like that, its so absurd, I am so sorry but I forgot where you live, is it England or well I dont want to keep guessing, I am not so good at some short term memory things, actually this is a large problem for me, so I apoligize that I cant remember, but there has to be some way of using the  same type of things like writing, being agressive no I mean assertive, I forget agressvive gets me in trouble.  Assertive is the better way to go.  Please let me know if there is anything I can do, someone I can contact where you are to make them wake up are realize this is a worldwide issue, not a United States issue.
 
No matter where we are from, we all have one thing in common, that is unending, horrific pain.  Pain that we had no power over how it happened to us.  But we must have power on how we are being treated.  So again, let me know give me names, whatever I need that may help, I am on a mission and I will not stop until this gets big enough that everyone knows what is happening to us.
 
Ok, well happy turkey day all, hope you are all having low pain days, and I will keep everyone up to date on the progress I am making.  And I will be making progress.
 
Take care all,
Kathy
degenerative disc disease, fibromyalgia, osteoarthritis, neuropathy, lumbar laminectomy july 1998 no help, rechargeable neurostimulator unit low right back w/lead wires to left side and right leg unit not working just sitting there.i am 57 years young in may will turn 58. i have 2 grown daughters, 25 and 29. i have 2 grandchildren, 9 year old grandaughter and 5 yr. old grandson

Hbpersians
New Member


Date Joined Nov 2011
Total Posts : 6
   Posted 11/26/2011 6:36 PM (GMT -6)   
Copy of a letter we could revamp for our needs? I'm a part time teacher. I'd LOVE TO MAKE them sit down and listen to me educate them on our fight. I'm also ADHD, so a form letter would be priceless. I live in Iowa. ADHD doesn't mean dumb, I just can't start to stupid project. Wrapping it up is the easy part.
HB

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9664
   Posted 11/26/2011 10:47 PM (GMT -6)   
HB: I think the Hardest part of any letter is getting the salutations down and the
correct title of how to address someone Dear Abby, has a booklet on this and
maybe you can look it up with a google search on Dear Abby. I believe it's at
a reasonable price and it was recently mentioned in one of her columns, when addressing
Senators: the address at the top and envelope should be: The Honorable (Name), United States Senate,
Washington, DC (zip). Then either: Dear Sir: (or) Dear Madam: and ended with:
Yours very truly or Yours Faithfully. I had a communications class in College...
Letter writing is never is easy...wish it was...
**********************************************
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...
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