When You Were First Diagnosed with Chronic Pain, What did you Need to Know to Help you Feel More in Control?

I am working on my chronic pain “Positive Tools Pathways” business. I really want my Peers input during this process. I already have 10 worksheets and handouts to assist us in discovering our individual paths to positive pain; understanding triggers and the tools that we need in our lives to achieve this. ¬†Any input will be seriously considered ūüíú

Please put in comments or use my old email @, msclvwalker@ gmail.com. Please Note; I entered a incorrect email address when I first wrote this. Yikes! Please try again and accept my apologies

XX Lucinda

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Yes, People with Chronic Pain/Fibromyalgia do Work

new good spirits
new good spirits

working and firbo assistinng huricane katrina survivorsWorking while surviving and planning to live Well with Fibromyalgia is not uncommon. I have worked, volunteered during Hurricane Katrina, spent 8 years in college and then two years in graduate school. During those last two years, I interned 24 hours a week; with a full schedule at the university. I was in pain and many days it was a struggle. Once every other month I had to call in and tell them I was unable to come in as my pain level had increased. Usually, I was able to cover most of the work from home, otherwise I completed  the next day. It was an interesting experience to work with my fibromyalgia syndrome; in many ways.

I never had a supervisor or coworker come right out and tell me that I was incapable of performing my job duties. I am actually a very competent worker, or was then. Most coworkers¬†were¬†considerate about my¬†pain syndrome, but, there were always the few who I just knew looked at me sideways. I choose to ignore them as simply being ignorant of my situation. Better¬†than that was doing this; ¬†if the opportunity came up, I would spend a few minutes in conversation with the person,¬†discussing what it felt like to be in my body. I let go of their internal reactions. Afterall, this was not my personal issue and didn’t serve any positive purpose for me.

I am not currently working but I would prefer it. I found out that I did better when I was out among people. When I moved my body and mind from task to task. I definitely paid for it some days! I have often pondered why working and studying so hard helped me with my pain levels. I have come to the conclusion that my serotonin and endorphin levels had a greater output. Why? Because, I was happy, I was exercising, I was using my brain to focus on others and other things. I was not giving it the time to focus on my pain.

This has taught me a lesson that I keep close to my heart; keep as busy as I can. My busy today doesn’t come¬†close to¬†the busy then, but it still accomplishes¬†some of that distraction that¬†I used to experience. I know we all get angry at our doctors and family who tell us to stay busy. I did and do, don’t get me wrong.¬†However, it turns out they are correct, at least for me. On the days when I flare beyond my endurance to get up and move my focus is all on my pain. There is no joy, no tasks, no focus on something besides me which stops those all important¬† neurotransmitters¬†from firing as¬†well.

I am not writing this to chastise those of us who can no longer work. I am remembering that it can be better than just staying home. Work is a subjective idea. I try to work on my blog and other plans every day at home. I stay busy with odd, small and quick jobs in the house. I pick one larger chore each week and focus on it for an hour. Keeping an organized, and same plan in place for what needs to be done each day also allows me to look forward and know where, and if, I can do outside of the home activities or maybe just spending time drawing for a half hour.

I have spent today engaged in a few small tasks, like this blog, responding to Peers on forums and blogs, submitting a page for publication (it was already complete) and know I am going to work on a my once a week large project. I am going to go do this, despite feeling like a large flare is coming on; perhaps if I get going with it, my pain levels will decrease. Perhaps not. But, for me, it is worth trying.

If you missed my organization tips for a binder or a daily reminder book, or just handling your chores, use the search box. Wishing you all the best in whatever efforts you can handle today.

Lucinda Tart, Fibromyalgia Peer Advocate/Life Skills Coach

It’s time to discuss that dreaded topic, appyling for Disability Benefits.

Applying for Disability (FMA)

Hi Fibro Peers,

This is a topic that creates a sense of failure and depression in me;¬†maybe you too? I cringe when I think about it as it brings up that negative thinking¬†loop of “I have failed, I am a FAILURE”; “I have zero to offer my world”. I have actually tried to apply, many moons ago. I even contested. I had a disability lawyer I trusted. It took over five years. I lost.

I, like this article on National Fibromyalgia Awareness, states, that is it critical to have a physician¬† believes your disability. I was¬†not so fortunate, mine did not believe I should receive SSI; what??? The paperwork I brought to him for the judicial judge, who ruled on my disability severity, was useless. This doctor told me he did not believe in “giving up” and while he filled out the paperwork, he specified nothing that indicated that¬†I could barely do my basic activities of living. Sigh. This experience is one reason I get panic attacks when I consider another go around. But, it is not the only consideration.

I, having not many options, went back to college and then onto universities, eventually I graduated with a Master’s degree in Social Work from a consistently top ten school in the United States, late in my life. I spent ten years, full-time obtaining my Masters as I skipped beginning college after high school and then I married and had a baby. I became a stay-at-home mom. Prior to developing fibromyalgia, I owned a small, self designed business, homeschooled my tween, then teen daughter alone and in groups of classes. Being a mom meant everything to me. Giving up my business when I began living with fibromyalgia was a huge blow to my esteem. It was when she was beginning high school and I¬† after I finally had a¬†better understanding of living Well with chronic pain that I began my studies.

Being a stay-at-home mom with no income above the poverty level, I was fortunate to receive Pell Grants through Junior College and my two Bachelor degrees. I borrowed a small amount from Student Loan.gov. Then I graduated during the beginning of the first recession. My plan to go right out and get a job advocating for those who lived different physically abled lives went right out the window along with human service sector jobs. I applied and applied, then, again “I have failed”.

I quit trying. After nine months I found a fantastic, new, online graduate school! “I have NOT failed, I have a new plan filled with hope”. Well, yes and a resounding no. I was accepted and started grad school three months later. Full-time grad school in a therapy degree meant 10-15 hour days, everyday, to accomplish more reading and research then a high school library could contain, writing papers of at least 18 pages with at least 40 references and 26 hours a week mandatory internship work placement!!!

And, then the whopper¬†big stoppers. Once again, “I am a failure”.¬†The huge debt from Student Loan.gov that I knew I needed to begin repaying upon graduation was no problem. This time I would definitely be able to acquire a career that paid very¬†well. Having no idea that yet another, much worse recession would occur the year I graduated, again hitting the human service sectors hard and that some person using their cell phone while driving, would hit my stopped car at 30 mph. Yeah, the best laid plans. My really great passion for helping others by obtaining a coveted masters degree became like the phrase, “Make plans and God laughs”.

So, while I have learned that making plans and expecting or demanding them to work as planned is silly, why have I not applied for SSI. I believe I have a very good reason here. I put my credit card debt into a government repayment program. In two more years they will all be paid off, without me paying the interest. My credit score will be close to excellent as well. This leaves me the ability to move, to buy a home, to responsibly attain lower credit or credit card and use it correctly; paying off the debt in full every month. The trap is that I am not able to work at virtually anything brick and mortar in my degreed field.

Yes, I will apply again soon. Soon, may mean those two more years. After all is said and done, I am not growing younger and don’t count on plans made anymore. I am in the process of exploring alternatives to working in my field from home. These are few but, don’t laugh, I have a plan :).

I offer this link for those who may be more intelligent or no joke, desperate to have some income. Did you know that once you have SSI there are many other benefits one can apply for? They come with long wait lists but if you need them, don’t wait, make an appointment and explore the options. Housing, help with food, medical, and more. You and I are not failing at anything. We are succeeding in living the best life we can under circumstances we did not choose but must navigate in our mazes.

Hugs and Hope,

Lucinda Tart, Fibromyalgia Peer Advocate/Life Skills Advisor