Communication is Key

I can not stress this enough, “COMMUNICATION is KEY.”

Image

For any pain, medical, disability or really any type of relationship to work there must be, communication.  If two people or even a caregiving team do not communicate the consequences can be major, medication changes go without notice, feedings, seizures, changes in behavior and many other issues can arise and cause medical issues to worsen.  Recently a change was made to my brother in law’s (BIL) medical status and he was placed on oxygen, “only when under stress or is working hard” which for him is walking to the car.  The point is at every dinner we discuss the issues of the day, doctors appointments, program issues if any for BIL, my mother who has heart issues as well as myself which I am dealing with the chronic low back pain, so as you can see communication is imperative between myself and my amazing wife, Trish.  As I started to say, this is done each evening as it gives us a chance to catch up as to whats happening and to ask Robert what he remembers about his appointment(s).  His mental factor is not what it use to be due the the seizures, brain surgery, various parts of his brain having been removed but I will tell you he is the most positive and faithful person you will ever meet considering everything he has been through in his life (now 47 years old).  

Between the three of us we have just about 50-60 pills a day, spread out over five times a day, oxygen, c-pap machine (to keep going), at minimum one to two appointments a week on the low end and this does not include program pick up and drop off for Robert, work, my daily back issues, writing blogs, meals, (2) large dogs, (1) Cat, (1) Red Ear Slider Turtle, yard work, etc, etc, etc.  So you can see why communication is important.  For Robert’s seizures we have a small (4″ x 6″) pen and pad sitting near where Robert is the most during the day so that when (not if) when he has a seizure we can write down the details and that log then goes with Trish and Robert to his next Neurologist appointment.  So, we are not only communicating with each other but it is just as important to communicate with your caree’s doctors, physical therapists, and so on.  They need to know any changes in your caree’s status just as much if not more than you do.  We take this to the extent that in the beginning with my pain I had a pain log (8-1/2′ x 11” spiral binder”) in which I would write down my chronic pain issues as things happened and that would make the trip to the doctors.  With my mom we have what we call, “Mom’s Medical Book of Wonders,” due to the fact that she has had a heart attack and a stroke in the same week, she has had her lungs drained of fluid, the inside of one scrapped (during which they broke a rib) and then with in 6 months of that came back and had double heart valve replacement surgery, while in there have additional minor strokes and many weeks with fluid build up and various medications needing to be adjusted and she still kicks butt and take names and walks her baby, Taffy daily.  This was all communication to the extreme but it had to be done and everyone who saw the various binders was appreciative because everything they needed to know about myself, Robert or mom was and still is in one of those binders or notebooks.

Image

It may not seem like much and it may seem like a bunch but it actually is pretty easy and simple once you get into it.  So next time you think about it (you just did) grab a binder and start writing notes to yourself and your doctor about whatever is bugging you, he will and you will appreciate it in the long run. 

 

Talk with you later.

/ : ^{ )>

There is only one way to happiness and that is to cease worrying

about things which are beyond the power of our will.

                              – Epictetus

Why is PickYourPain.org Here?

     After 20 years of dealing with my own daily chronic pain and for the past four years being a caregiver for my mother who has heart and other medical issues, as well as caring for my brother in-law who now lives with us and has epilepsy, I felt it was time to tell my story and try and help others who are dealing with chronic pain as well as pain in general.  My wonderful wife, Trish who recently wrote a book, “Forever a Caregiver” which details the issues she has dealt with since childhood with her mother and father and their own medical issues and her dealing with the passing of her mother in years past.  While she was writing this book and many articles for various publications she came across one of the sites I’ve listed as, “Blogs I Follow,” Caregiving.com, which was put together by a wonderful, amazing and caring lady Denise Brown.  This wonderful site brings together caregivers and gives them a location to tell their own stories, share their ups and downs. connect with other who may not have the exact same issues but the majority of the underlining issues are the same and that is where we all connect and become an online family.  Recently (3-4 months ago) I became active with the site and today I am a group manager to several of the groups on-site, am involved with the internet radio shows Denise hold weekly, twitter chat rooms as well as basic site chats and much more.  This site was the final needle in the haystack I needed to push me into starting this blog site.

   The sites name PickYourPain is giving you option to choose what your pain really is.  Is it the crick in your neck, the twitch in the lower back, the stabbing pain in the back of your arm or something totally different.  What is your pain, whats causing your pain and how do you take care of your pain?  That is why I’m doing this and I want to do it with the addition of humor.  As my tag line say, “Pain Without Humor is just Painful” is just that, if you cant laugh at your pain, you then cant make the next step into figuring out the best way in dealing with it.  If your not laughing then your concentrating on the pain and it is then clouding up your mind into finding the solution.  I will agree pain is painful, I’ve been dealing with (my levels) a level 5-7 of 10 pain for the past 14 years, before that i was at the least a level 7-8 for 2-3 years, and for the first four (4) years I was anywhere from a level  8 to a 12, so I can honestly say (as can my family) Richard knows pain.  I have done the research, been through the tests, tried the drugs (western and eastern) have learned what does and does not work for me and am willing to help point you in a direction that might help you with your issues.  I AM NOT A DOCTOR AND I DO NOT CLAIM TO BE ONE.  I am just a guy who has talked the talk, did the walk and now want to share and help.  If I can point one person the that one website that will give them the information they need or points them to where the information is or if I can talk someone through a hard day or a hard minute, give someone an alternative to narcotics to discuss with their doctor then that makes what I am doing here all worth while.  After my accident (well when I was rear ended by a DUI driver) I was told to “You will have the pain for life and you will need to get use to it.” That’s what I thought I had to do because I was being told this by a doctor.  Well I realized after trying it that way for 2-3 years that he was full of crap.  You need to advocate for yourself or a loved one to get the care and a caring doctor that you need.

Stand up for yourself if the pain is to great, I did and in doing so the treatment I received in a matter of day reduce my pain level from the customary 8-12 do to a consistent 4-6.  Over the years I have tried to get lower than that and I’m not sure why.  I always said if I can get to a 5 I would be happy and the when I got there I wanted lower, now I know if they can keep me at a 4-5  I would be an am happy.  Find your line and when you get there be happy with what you have  of course if the doctors say they have something greater, maybe try it but if your where your comfortable why more?  Well, that enough for me my back is saying its way past your sitting down time and time to more and stretch, so until next time.  Find your line and stick to it, it may be the best you get. 

/ : ^{ ) >

It is in the act of giving that we find joy,

without the expectation of anything in return.

                                                               – Author Unknown

eJourneys Pain

Pain eJourneys 070913

My Daily Struggle with Pain

This expression of what I am feeling daily was put together without collaboration by a wonderful, amazing and talented woman EJourneys.  It goes to prove that there are others out there that deal with pain on a daily basis as I do, maybe not the same type of pain but pain none the less.  If you would like to read up on her story or comment on her wonderful work, I have added her Bio and blog site below.

EJourneys cares for her partner and blogs on Caregiving.com.  In addition to being active on the site, she contributes to the CareGifters anthologies (edited by Trish Hughes Kreis), which help raise funds for caregivers in need.
————–
Thank you for PickYourPain.org and for telling your story.  That took a lot of guts on a lot of levels, as did your perseverance through so much.

I feel immensely fortunate that my own journey of physical pain has been resolved.  I tell my story here:
http://hurricanecountry.blogspot.com/2005/08/pot-of-painlessness-at-end-of-rainbow.html

%d bloggers like this: