Flipping my Living Well with Chronic Pain; A Hard Look at My Aging Parents

Hello Peers,

Life doesn’t stop because we have pain, it marches on.  Yesterday I happened to be at my parents home during a trying moment.  My journaling, adapting my activities of daily living, learning about calming methods and alternative medicines, listening to my limits ( and applying them), work and academics in this and related human needs fields, all served me well. I read my email to my husband this morning and he suggested I put it in my blog.

A side note before the email posted below;  I have not been attending to this blog for quite a while now; I am sorry for that as I know, as you know, we all are looking for our Peers to assist one another. However, as I stated in my last few months of blogging before this,  I knew I needed time to assist myself before I could continue to assist others. Don’t we all.

I am almost finished with one small project. It’s a project that would have taken a person not in constant pain about two months; it’s taken me almost eight months. Still, I have the pleasure of knowing I did it! My second “project” will be advertised here in about two months. I have been slowly trying to put together a “Well Living With Chronic Pain” program for several years. I will offer it in person in the area I live in, and online via pre-made video webinars.  Both will not accept insurance but will be inexpensive with options for us, financially challenged Peers. I created this out of need. Books are out there in the dozens, pain clinics, advice, support chat rooms, but I could never find one easy to follow, and adapt for my needs, program that allowed contemplation and practice with advice from Peers. This is not a money maker, rather it is a act of love.

Hello my parents

Today was a good day for my observations. It was hard for me to watch (…) in pain but it was also a good thing. I was able to step in and use my skills without having the emotional components of a marriage. I knew tricks of dealing with bad pain that I instantly began applying.

(…),
I observed you having little patience with assisting (…) I know you had a very difficult time when you were young; suffering with asthma and your parents virtually ignored you. I believe you learned to keep it all in as no help was going to come to your aid. This, combined with your easily upset emotional equilibrium, makes it hard to be patient when a loved one is moaning out loud. I understand that. The suggestion I have is to put yourself in their shoes, not yours, and practice acceptance of this new part of your daily life. Also important, find ways to remove yourself and talk with (…) about needs versus wants. (some wants are actually needs, this can actually be tricky and has to be figured out by him but without no ability for you to continue living)
I could do a presentation for you both if it would help.

(…),
I know from your childhood that you suffered for many months with a debilitating illness; any intrusion like this one brings back fear. You learned that you had others there helping you and voicing pain was a safe thing. You also became in control of your illness, through having that support.

There is nothing wrong with either of these childhood experiences helping you in your adult lives except that they now serve to interfere with your marriage as you both age.

(…),
Be kinder. Also, don’t ask what (.) wants, think about what (.) needs. (.) needed looser pants. Period. Roll up the socks. Have (.) sit to dress or stand but don’t inquire too much. (.) has his rights but needs to let go a lot more.

(…),
Don’t demand every little thing. If your helper says you don’t need your wallet, you don’t. Practice releasing some control. Believe me it will serve you and future caregivers.

Both of you are going to need to practice asking for help. Being private is great. Nothing wrong with it. However, if an illness or aging issue is too much your going to need to speak up and trust that I am a competent adult who can, and will, be there for both of you. Your other children are far across the country and can’t come stay with you for a few days or weeks.

I love you both very much. I am sad to see your pain but I think, and hope, my words might help here. My future actions as well. I am a trained Social Worker, Independent Living Specialist, and Chronic Pain Peer who has lived well with many syndromes for decades.

***Living Well doesn’t mean one lives perfectly or fully in a typical eight hour day, it means as little stress as one can create by mindfully creating ones life.
💜🦋💜

Lucinda Tart, ILS, Chronic Pain Peer, MSW

The Longest Fibromyalgia Flare in Years; New Chronic Neck Pain

Three years ago I was rear ended while stopped at a red light. The van totaled my cars rear, subsequently totaling the car. It, and me, were shoved by the impact to the end of a large intersection. I have suffered through numerous physical and mental issues due to this, lately it’s my neck that’s wreaking the havoc I’m enduring every day, every minute.

The impact inuded whiplash, I was “out” during my trip across the streets, but know my head was bobbing away. I tried to see a specialist about my neck pain but with all my other injuries, the process got started and then I dropped the ball. I was overwhelmed with so many doctors appointments. My family helped me with virtually everything for two and a half years, I was really in bad shape. Today, I am in medium shape.

The last month or so, instead of experiencing neck pain several times a week and when I lay down to sleep, I am having chronic pain in the neck! Those of us with fibromyalgia know that our neck and shoulder area is already a tender area. My neck pain is increasing the trigger point pain in this area due to tight muscles or something else that I haven’t had diagnosed yet. All I know is it hurts! This combination has kept me on my coach, or in bed, for almost two weeks now. At first I was accepting of living with increased pain; thinking it would calm down. It’s not.

I am not feeling very calm about it today. I am feeling angry. And, that’s ok. But, it’s not going to be alright if it screams pain that stops me from all activities of living, except walking my dog, for much longer. The only thing I am accepting right now is that it’s time for me to go back to the specialist, and I need comfort food. Chocolate sounds really good right about now.

THE Continuing Question; Opioids Use for Chronic Pain

One-third of long-term users say they’re hooked on prescription opioids – The Washington Post
https://apple.news/ASaZtPbh5QxepZLsdPPEaXg

Its been several months since I’ve posted anything in my blog, but this news piece warrants my response. This is only my opinion on this subject, as someone who has chronic pain and as one  who uses opiates for the relief of that pain, I have something to say that’s important on the subject. The very first thing I noted in this article was the use of the words words, “addicted or dependent”.  After 16 years of use for my chronic pain I am dependent on opiates. This is very different from someone who becomes an addict, and until this difference has been statistically weeded out we need to stop blaming people with pain and they are doctors for the epidemic of addiction.blaming people with pain and they are doctors for the epidemic of addiction.

 

I have stated in previous blogs that the other medications that have been developed in the last decade don’t work for me, that doesn’t rule out that they work for other people because they do. One of the main tenants of getting rid of using opioids for chronic pain is that there are other medications out there, does this meanthis mean that everyone needs to stop using pain medication because there is the chance of addiction?  No. The reason is exactly as I stated above the other medications don’t work for everyone. Does this mean that doctor should be very clear about trying other medications first, yes I believe they should.  Does this also mean that doctors should be very clear about what opiates are and how they can affect your body, how one can become dependent on them, yes they should. However, I for one am not am not willing to take the blame for people who become addicted. If anyone should take on this  plane game, it should be the doctors who don’t monitor their patients use closely.

When,http://www.prescriberesponsibly.com/articles/urine-drug-testing

In addition to using opiates, I use alternative methods of self-care as well. I’ve written and lot here about having a tool kit of methods to help one deal with their chronic pain. Any responsible doctor would offer these tools to their patients . But as the doctor and patient relationship develops over time, each patient will be able to use different tools differently at different times and the doctor needs to understand that. I’m not sure that it this point in time  doctors really understand this clearly. In the end I think it comes down to doctors being better educated about chronic pain in general and the different ways in which patient can help themselves, doctors can help patients and the different ways that patients may or may not respond to different methods.  The relationship between patient and doctor is always a two-way street. If you don’t have a comfortable give-and-take relationship with your doctor I suggest that you find a new doctor, one who is willing to explore over the years with you different ways that work at different times without judgment.

What do you think about this subject what do you think about this subject?

I Can be Distressed or I Can Practice Acceptance

My partner and our daughter (27 years old) left  yesterday to go to Disneyland. They haven’t been for more than 10 years and this is kind of the trip of a lifetime for them to share as adults. They both really enjoy Disneyland, while I don’t as going on rides is just too stressful and causes too much pain for me.  I stayed behind to take care of our daughter’s cats and my dog. I had to rent a car in order to do this. It’s a wonderful car with leather seats, electronic starter ignition, and well I was thinking that I might take a small road trip over to the beach. Instead this week is going to be filled with more rain. We all know what weather changes bring, pain.

I could feel very upset about this development. And I do feel a little bit sad, I also feel a little upset about renting a car and not using it.  This is a perfect time to try and practice what I’ve learned in the past; in the winter I have more pain and there’s no point in getting upset about it. That doesn’t mean I don’t get upset , I do, but dwelling on that feeling is not helpful when you’re in so much pain you can’t get out of bed. So while they’re in Disneyland my Rent-A-Car will sit outside and look beautiful and I will remain cozy with blankets and the cats and dog inside watching marathon episodes of who knows what on cable TV. It’s a perfect time to begin to process acceptance as winter is here and it will only get more brutal.

I’m sure there’s other peers of mine out there practicing the same thing today, so let’s all practice together.

PS, I used text to talk for this blog so forgive any errors. Have a great week and I’ll get back to you later, dear blog.

 

 

 

 

 

New Research using FMRI to “View” Brain Functions in Fibromyalgia Patients May Hold Hope for Future Treatment and Diagnosis

A respected fellow blogger posted this study today. I read through it,  having a background in reading research studies, I found this one to contain some real merit. There is still much more to study; this is sound imagery, seemingly combined with sound testing to achieve the results, however, it is a first step in many needed to actually assist us chronic pain peers at the doctors office.

I don’t have full access to this journal study in “Pain” and would feel more hope for future medical help if I knew the exact procedures used, duration, and patients symptoms combined with length of suffering. That stated, I in no way feel the research should be discounted, it should be used as the building block for continued tracking of our brain and central nervous system signals.

How the medical community will apply these findings to our treatment remains a huge unknown as well. But, a first step is always better then not stepping!

With Hope Today,

http://www.neuroscientistnews.com/clinical-updates/neural-signature-fibromyalgia-may-aid-diagnosis-treatment

Sharing a Link to Research on the use of Complimentary Medicine

Hello Peers,

I receive email updates to the work of the “National Center for Integrative and Complimentary Research”. Their research usually relates to us, chronic pain suffers.  This one is interesting, but leaves a large question that should be answered, “what do we use them for?”. Emotional health, social health? In my experience all the peers who use these methods use them to help relieve their levels of pain. Anyone have another answer?

https://nccih.nih.gov/research/results/spotlight/us-musculoskeletal-pain-use

 

How Blogging for my Peers Assists Me

Good Afternoon Peers,

Its time for me to thank my Peers who read my posts. One year ago, I began this site. I was still struggling mightily with cognitive issues, from a rear end accident I experienced while stopped at a red light, three years past. I was not able to write a six page post without spending almost three hours figuring out context, spelling, and connection throughout the post. In looking back at the beginning of this blog, I find many spelling errors and dropped thoughts despite the careful scrutiny I used.  I desperately needed both a way to use my MSW degree and feel some sense of purpose.  This small blog gave me that positive purpose. It wouldn’t have happened without all of you.

I am better now, but not well. Along with increased areas of constant increased Fibro pain, I am struggling with PTSD. I have memory deficiencies and problems with executive functions. Critical thinking. This blog and therapy literally keep me on track in trying to both remember and apply my personal toolkit. Which is not to say I am able to use them as well as I did in the near past. I remain hopeful that in discussing my personal and professional positivity paths, some of them will stay in my daily use again. Maybe one day they will stay in mind all week, even all month.

While I know that I can still offer this, even teach these positive ADL’s, I do not know  how realistic my goals for myself are anymore.  I do know that without writing them down, without researching them, and without bringing them back to the forefront of my cognition, I would remain lost in negativity. I am enormously pleased that some of my peers have found issues they relate to, and others, new tools to help them get through their chronic pain!

Despite my new chronic medical issues, this site will always be a happy place for me to take my time and thoughtfully share with all of you.

XX😘