Pain Talks, but DOES NOT WIN!

Welcome to Pain Talks!!!

 

 

 

Thank you for stoping by my little corner of the internet!

First, and most importantly, welcome to Pain Talks but DOES NOT Win! I’m a 30 something ePatient advocate who is trying to bring awareness and attention to this commonly misunderstood disease called Arthritis. My goal is to help others navigate through any form of Arthritis (aka Arthur), chronic pain, surgery, or disability while still having an active and enjoyable life. I hope to accomplish this by using patient stories to help educate others and through a commonly underused technique called sarcasm. Now, I don’t guarantee that I have every answer but if you are in pain you can count me as a friend and fellow warrior!

I am a Stanford University MedX ePatient Scholar, rock climbing accident survivor, blogger, broken athlete, skier, and space nerd. I’m currently employed as a premium tax accountant but my story also includes stops as a political operative, ski instructor, and delivery driver among other things. It is pretty common for me to go from the seriousness of testifying before the Idaho Legislature about arthritis to telling silly second grader jokes with ease. I’m nothing if not entertaining, at least my ego thinks so :) Most importantly though, I’m honest, hard working, and will always show up when it counts most!

If you are still reading this, THANK YOU!!! Please stay as long as you want. Any comment, suggestion, or a recommendation is always appreciated. If you would like to email me directly, my e-mail is paintalksbutdoesnotwin@gmail.com.

#MotionisLotion

P.S. As a newly minted Stanford University MedX ePatient Scholar, I would love an opportunity to share my story or consult with your group, hospital, classroom, conference, etc. I’m willing to travel, use social media, or other technology like Google Chat in order to help get my message out. Please contact me at paintalksbutdoesnotwin@gmail.com for more information.

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Thats me after the 4th of 7 surgeries. I’m one good looking kid!!! :)

8 comments for “Welcome to Pain Talks!!!

  1. January 3, 2014 at 12:25 PM

    Hi Alan, I just wanted to congratulations on your journey back to living a full life. Your story is so inspirational to me because I know what daily pain is like. My situation does not come close to yours and that gives me hope that I will be whole again someday. Keep it up, you look great! I wish you all the best with your future journey.

    Sincerely,
    Bridgett

  2. Marygrace C
    January 3, 2014 at 2:56 PM

    I have found Low Dose Naltrexone to have been the biggest help to me for all my pain. I was at 9 most of the time, bedridden for two years and am now up and around again, doing my ballroom dancing.

    I love my dancing! So to be able to get back to it is awesome! They did two studies at Stanford on LDNs role in the management of Chronic Pain, if you are intereested in looking them up. Both showed excellent results. And the only side effects are at the beginning of treatment. And many don’t experience them at all.

    Hope you will look into it as I think it would help you continue in your journey to health. It modulates/orchestrates the immune system, so I will take it forever. Cheap too!

    Best wishes on your journey!

  3. james corbett
    January 3, 2014 at 3:00 PM

    Hi Alan, I read your story and I am glad your doing better, my wife has had RA since 1969 and she was treated with everything you can imagine, in the last 2 yrs she found a pain releaver, non narcotic called GABAPENTIN it’s a nuroton which keeps the brain from sending pain signals, if you haven’t heard of it ask your doctor or go on line and look it up. regards jim Corbett have a great new year

  4. Laura DeMambro
    January 3, 2014 at 3:20 PM

    I read your story and it gave me so much hope. You see almost 7 yrs ago I had to accidents within two months and my life became a lifetime of pain. So much pain that I considered suicide. Thank God my family intervined for me and got me help with the depression. I am trying to take back my life and your story is so inspiring, that I just had to send out a big THANK YOU to you. I am especially glad I was able to share your story with my friends and family on Facebook. Thank you again for sharing your story.

    Sincerely,
    Laura DeMambro

  5. Kathy Schroer
    January 3, 2014 at 4:43 PM

    your story is very encouraging. I am a 58 yr old “grandma” that has suffered with osteoarthritis since I was in my late 20’s, RA for over 10 yrs and fibromylgia (just to name a few). Pain meds were not the answer so I am trying to deal with it all in more proactive ways. I would love to be able to chat, share and learn from people who can actually relate~please let me know how I can become a part of this awesome sounding group. Thanks for sharing your life. God bless.

    Kathy

  6. Amy
    January 4, 2014 at 1:19 AM

    My husband was in pain for 15 years before he saw the “right” rheumatologist and found out it was Ankylosing Spondylitis (cousin of RA). They prescribed Enbrel and within a week, he went from having to hobble out of bed and “limber up” for several hours each morning to just getting up and doing whatever… like I do. And he does NOT have the pain. He “feels it” when it gets real humid but thats about it!!! SO awesome! He takes a shot of this every week and it really has changed his life. RA can be treated by Enbrel also.. We call Enbrel “liquid gold”… because it costs as much, and is worth every penny. Enbrel has a program that will basically pay for it.. Im happy to tell you how if you want,.. or just call enbrel. And no I dont get paid for this or commission and im not a spammer. I just know how bad it was for my husband and want to show you what he waited 15 years to learn about. Ask your RA doctor (there are other meds like Humira.. havent tried these, but Enbrel is like a magic fix for my husband) Good luck!

  7. charles
    January 4, 2014 at 3:03 AM

    I am 67 and have had RA since I was 35. I go back to the days when Motrin (advil; Ibuprofen) was a prescription drug. Been thru them all: Indocin, Clinoril, colloidal gold injections…and so on. I am now doing infusions of ORENCIA once a month. It comes in a self-injectable form, but Medicare does not recognize/pay anything towards this, thus the infusion. My supplemental ins. is excellent, but Medicare rules the roost. I will not abandon modern medicine. You weigh the positives with the risks.
    I will not bore you all with advice. We deal with our pain in our own ways. I will stress 2 key factors in being as close to “normal” as possible: don’t be overweight (obviously, the less you carry around the better), and exercise. Obviously it must be low-0 impact. I swim. Probably the best of all exercises for anyone. It’s not miraculous; nothing is…but it helps.
    Listen to your body, and be aware of the fact that some days you will get flare-ups, and feel that it all is a waste of time. Just stick with it. And don’t expect much sympathy: nobody can possibly understand what we go thru…pain all of the time.
    We were dealt these cards. I don’t know if there is a balance somewhere. We’ll see. Who cares: this is the “now”.
    Just work, stay busy, don’t wallow in self-pity and take advantage of some really fine medical care that’s out there.
    It’s all we’ve got.

  8. April 3, 2014 at 2:36 PM

    Hi Alan,

    I need your help! Perhaps you could guide me in the right direction. I developed a necklace clasp for women with arthritis to assist them with putting on and taking off their necklace. I will be running a promotion in May and will donate $5.00 for every simplicity clasp I sell to the Arthritis Foundation. I am running into a bump in the road. I am finding it difficult to reach women with arthritis to test my jewelry clasp out. Any ideas to get my product tested by women with arthritis will help tremendously. I want to donate as much as I can, but need as much research as possible as well. Can you help?

    Brandi

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