My National Pain Awareness Month Interview with Karin (9/15/16)

Hello Everyone,

I would like to thank Karin for offering to help me complete my 30 day, Pain Awareness Month, Person In Pain Interview a Day.  Karin is one who saw one of my postings asking for volunteers to offer up their stories in the hopes that someone new to chronic pain will find these stories either in my post or in re-posts on your site or on someones who copies it off yours and that they find a tip, exercise, trick, medication (herbal, OTC or prescription), or some other treatment that can help them reduce their chronic pain or the amount of time they have to deal with it.  With that here is Karin’s questionnaire interview.

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Richard Kreis, Certified Caregiving Consultant
 iCare Consulting – Chronic Pain Interview

Name: ___________Karin_________   Date: ___09/15/16___

1. How long have you lived with chronic pain?

     A1:  2006

2. What do you understand is the cause of your pain?

     A2:  Had lax joints ever since I was a teenager, I now know it’s due to            Ehlers Danlos Syndrome Hyper-mobility Type Spinal. I’ve had 8 spinal
surgeries, knee replacement, and multiple other orthopedic surgeries          (knees, hands, feet)

3. Describe your typical day? How is it impacted when your pain is mild? Moderate? Severe?

A3:  Everyday is different. Some days the pain is in one area and                      moderate, other says every joint aches and it’s severe.

4. What do you do to manage your pain (e.g. medications, complementary therapies, etc.)?

     A4:  Pain medications, TENS, massage, rest, PT, bracing.

5. How did you figure out what approaches you needed to take to get your pain under control?

     A5:  I educate myself about every condition, the function of every joint,,      all medication and treatment options. I’m open to trying most any                treatment.

6. Is your pain management adequate? Can it be improved? If so, how?

     A6:  Usually, though my current Pain Management practice isn’t nearly        as good as the one I had in Arizona before moving 2-yr ago. That was            superior. Currently it’s adequate but not very individualized.

7. Has your attitude changed regarding pain as a result of your experience with chronic pain?  How?

       A7:  Before experiencing searing nerve pain I could never have                         understood it. I’m an eternal optimist so I always put things                             in perspective and I know others have it worse than I do.

8. In your opinion, what is holding back your pain from improving or becoming stable? How do we break through those doors?

     A8:  Ehlers Dan Los Syndrome is a connective tissue disorder.                          Hyper-mobility of the joints, thru may life, has resulted in-systemic            lax joints and arthritis in various joints. Just when I think I have one              system / joint area stable another will begin to bother me. Most recently      elbows which weren’t a problem previously.

9. What does your healthcare provider do to help  you with your chronic pain? What do they do that’s holding you back?

     A9:  I have a good Physicist (physical med-doc) who coordinates my              care, decent pain management, and fantastic surgeons got the most              part. Being a well educated medical consumer is the best plan.

10. How has chronic pain impacted your family life? Your social life? Your work life?

     A10:  I had to stop working 7-yr  ago. We don’t have children and have          always been financially conservative and debt averse. My spouse is very      understanding and asks no more of me than I can give.

11. Does the experience of living with chronic pain carry personal meaning or significance for you? Have you discussed this significance with your family? Your health providers?

     A11:  My family is somewhat understanding as are friends to whom I’ve       explained the condition, struggle, etc. My health providers know I can’t       work and has thus supported that whenever asked by disability
income providers.

   iCARE CONSULTING – NATIONAL PAIN AWARENESS MONTH PROJECT
(916) 849-4043 Cell,  (916) 471-0120 Fax                                           iCareConsulting@att.net, http://www.pickyourpain.org

Richard Kreis, Certified Caregiving Consultant
iCare Consulting–Chronic Pain Interview

12. What are your feelings when it comes to the thinking that the governments emphases is on opioids and the addictive qualities has taken away from the ability to manage patients pain and the inappropriate use which leads to addiction? Which in turn is actually hurting pain sufferers?

     A12:  I understand the concern of the government but the reaction has          been to move toward treating everyone as a potential addict. For those        who have used opioids long term, with no addiction issues, there needs        to be credibility given to patients who’ve done so. As long as I get meds
from one provider in areas on a dosage /frequency with no addiction              issues I should earn the respect and care level needed. At the same time      pain patients need to be open to working toward lowest dosages                      possible, accept Rx monitoring and testing.  Hyperglycemia does exist.        I’ve been careful to decrease dosages when possible. Many pain patients     want higher and higher dosages with no consideration given to the idea       that higher dosages = drug tolerance = hyperglycemia .

13. There is a stereo type out there that all those in “Pain” or on “opioids” are nothing more than addicts. Or, it’s all just in our heads? When you hear someone say one of these or something else similar, what’s your first thought?

     A13:  If they know me well, they’re stunned to hear I’m on them                      continuously. But that gets them to see that not every pain patient is a        pill seeker / doctor shopper. I’ve not come across anyone in my friends /      family that is critical of my meds nor my need to be out of work.

14. Where do you go? Who do you talk to? What sites do you go on, when you have just had to much?

     A14:   I do a variety of online volunteering answering insurance                        questions on various health sites. My career was in Life/Health                        /Disability insurance.

15. Do you think your family, spouse or friends truly understand what and how your chronic pain is affecting you both physically and mentally?

     A15:  Fully understand… never.  Moderately understand… most of the          time. Until you’ve lived thru chronic pain you can’t understand it.

16. How much is, too much?  

     A16:  In regards to family/friends, pity from them is too much.                        Sympathy and empathy are important. As for my daily life, for every            action there’s a recovery period and I’ve accepted that.

17. What type of treatments have you tried to rid you of your pain?  Which works best?

     A17:  Surgery,  PT, OT, RX meds, OTC meds, OTC topical gel/patches I,            TENS, heating pad or ice packs, and bracing when needed.

18. Have you found anyone or anything that actually helps with your pain relief?

     A18:  Through an online health group forum regarding spine problems I       met my best friend. We lived only a few miles apart until we moved               away. She totally understands me and is a source of comfort                             and strength.

19. What’s treatments are in your pain relief toolbox?

     A19:  See #17

20. What is your best piece of advice on how to best communicate when you’re in extreme pain?

A20:  The Golden Rule, treat others (communicate) the way you’d want        to be treated (communicated to).

21. What is the best piece of advice you can give someone new to chronic pain?

     A21:  Think outside yourself, don’t attack the world around you. Find            coping strategies that work for you and become your own medical                  expert on your conditions, meds, options, etc.

22. How do you stay in a good place with all of the physical issues you go through in a day?

     A22:  No answer

23. How do you stay in a good place with all of the mental issues that go along with controlling chronic pain?

     A23: No answer

24. How much of your day do you devote to your pain and trying to keep it in check?

A24:  No answer

25. Do you tell people near you when you need help or when you’re in so much pain you need a break, at home? At work?

A25:  No answer

 

   iCARE CONSULTING – NATIONAL PAIN AWARENESS MONTH PROJECT
(916) 849-4043 Cell,  (916) 471-0120 Fax                                           iCareConsulting@att.net, http://www.pickyourpain.org

 

As I’ve mentioned and for those who may not have seen it, I have been dealing with my chronic back pain for just under 23-1/2 years (as of 9/13/2016) and have tried or been put through trials of many various medications (Western and Eastern), therapies (Western and Eastern), positions (Yoga, Tai-Chi, Chair Yoga, Meditations, etc.), Hypnosis, exercises and even tried many on my own all for the one treatment that will help my chronic pain.  I have had a Intrathecial Catheter Pump (puts Fentynal directly into my spine) for almost 17 years and it helps take my pain from an 11 on a 1 -10 scale to a 5-6, except for when its not flowing properly, the catheter is getting plugged up, the battery is going out early, etc., etc.  The pump is suppose to last 5-7 years and in my 17 years I have had a total of 6 pumps.  I’m not the worst at math but I can tell the problem here does not equate.  So if you have the miracle cure that all 60,000,000 of us walking around the United States with chronic pain are searching for, or if you would like to help all the people that are new to chronic pain make their journey easier, please contact me at the email listed and I can send you the questionnaire or simply send me your story in your words and I will post that.

** RICHARD’S BIOGRAPHY IS LOCATED ON THE FOLLOWING PAGE **

RICHARD’S BIO:

Richard has always been very active professionally, individually and with his family.  Richard is the proud father of three wonderful kids and husband to a wonderful and supportive wife.  Richard is the owner of iCare Consulting where he helps new and veteran caregivers with multi patients, organization of home, office and car, travel, setting up respite needs, filing paperwork and other topics as needed.  He is also involved with iCare-Radio.net where he takes to the airwaves via blogtalkradio.com, his topics include, caregiving, pain, medications, government issues, travel, and more.

Richard is a part-time caregiver to his mother who deals with heart issues and also helps care for Robert his brother-in-law who has dealt with epilepsy his Richard, I Make This Look Good, Santa Cruz 2013entire life and now lives with Richard and his wife, Trish.  Richard is also a “Person In Pain” due to a drunk driver back in 1993 and to this day he and his family deal with 24/7/365 Chronic Back Pain, radiating down into his legs and up into his shoulders and neck.  Richard talks about how he deals with everything on his blog at PickYourPain.org, soon to be iCare-Talk.net.  He can also be followed on Twitter (@kreisr1) as well as on Facebook and LinkedIn.

 

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