Getting the treatment we need

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NiNi53
Veteran Member


Date Joined Mar 2011
Total Posts : 816
   Posted 11/18/2011 2:14 AM (GMT -6)   
I am sorry, because I know I am repeating myself, but something has to be done for us cp patients, as of yesterday, I wrote letters to my Senator Barbra Milkulski, Paul Sarbanes, The Governor of Maryland who I am ashamed to say, that at this moment I cant remember his name, but when I wrote to him and the other 4 officials I wrote to, I got the names right.  I also looked up in the back of the dictionary to see how they should be addressed.
 
I cannot and will not keep quite anymore, not speaking up will never help any of us.  At this point I have not used the HealingWell.Com name as I am not sure how the admin feels about using the name of the HW name.  But this is not going to stop me,  I will write and I will write until I have run out of things to say on the subject.  I will be going after the Washington Post next, see if I can gather some interest on the subject of Chronic Pain, and the difficulties that go along with having this disease.
 
Ok, its after 3am now, I think I will try to lay down for awhile.
 
Take care all, hope everyone is feeling as well as they can.
 
Kathy/nini
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

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9664
   Posted 11/18/2011 9:02 AM (GMT -6)   
I think that's great in what you are doing...much strenght to you
for getting this out there, chronic pain is real and needs real and better treatments....
well wishes to you in this battle....let the lines be drawn...
**********************************************
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...
********>^..^<********>^..^<*******

Mysti
Regular Member


Date Joined Jul 2011
Total Posts : 101
   Posted 11/19/2011 12:20 AM (GMT -6)   
Great going, Kathy!  I got your back, kiddo.  You're awesome and I envy your take-charge leadership attitude.  I wish there was something I could do, too.  Got any ideas?  I would love to help, but I'm way down here in Texas..
 
yeah  Well I am so proud of my good friend, Kathy. 
 
Love you girl,
Mysti
wink  
DDD, 3 bulging lumbar discs, bone spurs, facet joint arthrosis/sclerosis, osteoarthritis, possible fibromyalgia (my dr's are telling me that I "most likely" have fibro but won't actually diagnose it...)

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 11/19/2011 12:29 AM (GMT -6)   
Kathy,

I admire you for writing those letters. Many of us have talked about it here numerous times.... I just never followed through and actually did it. :( So I applaud you for actually doing it and your "get it done" attitude. This is an important issue.... and I think many people in higher positions need to hear from actual chronic pain patients.

Anyway, thank you for sharing... and I hope I can one day follow in your footsteps. Thanks for paving the way.... tongue

Hugs, Tina

tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2024
   Posted 11/19/2011 2:22 PM (GMT -6)   
In October our local newspaper had a four day series on chronic pain which was excellent.
I sent in my letter to the editor stating how much help we need. For example, if you have cancer, well there is no second judging you, you are given all the help you need immediately. Well chronic pain is just as serious and we need help too. To my disappointment they did not print my letter. I also went to my member of parliament for the area i lived in and sorry nothing can be done. Yeah right buddy, i bet if you had chronic pain i bet you would get the care you needed. Anyways, I tried, but it will take more than one person. The word has to get out there as to how much those of us with chronic pain suffer.

You go girl, Kathy. All the power to you.

Suzane

NiNi53
Veteran Member


Date Joined Mar 2011
Total Posts : 816
   Posted 11/19/2011 4:59 PM (GMT -6)   
Mysti, my good Texan friend, you dont have to be in Washington, D.C., your Texans, they come here, and you still elect them.  Put pen to paper, (that old fashioned huh), anyway you do it, write, write write, show yourself to be someone they should care about, because they should.  We are all worth caring about.
 
Take care my friend, luv ya
 
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

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 11/19/2011 6:37 PM (GMT -6)   
Kathy,

Good for you. I am all about good old fashioned letter writing. A well written letter to the right person can still be a very effective means. While I was getting the runaround on getting my SS Disability approved (about 2 years into it), I had had enough. I wrote a letter to my U.S. Senator (Lindsey Graham), and hand delivered it to his office here in Greenville, SC.
Over the course of the next 3 months, I got 4 or 5 personal replies from him. He looked into my case, and soon after, it was quickly approved. I have done stuff like that with other important issues in my life.

Good luck on your particular cause, you already have my support, if you need any help, please contact me.


David in SC
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
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