Image of me, brown hair and glasses, peaking from a novel that I'm reading to my class.

What’s Wrong with Me? Fibromyalgia Diagnosis-Part 2

As you probably have guessed, I am not a trained medical health professional. What I am is a mom, a mimi, a retired teacher, a lover of nature and of music, as well as, someone living with chronic illnesses. I share my journey to provide some insight and hopefully ideas that may be helpful to others dealing with similar issues. Always, consult with your doctor before trying anything new.

If you haven’t read What’s Wrong With Me? Fibromyalgia Diagnosis-Part 1, please click to read first.

Me, in bed looking ill. The top of my head is covered with a cold, wet teal washcloth. I'm wearing glasses and hoody sweatshirt that says GRANDVILLE.

The path to figuring out what was going on was not straightforward. Unfortunately, both the doctors and I only ever looked at one issue at a time. When what was needed, was to look at my whole self (mind and body)to figure out WHAT’s WRONG WITH ME? #fibromyalgia #newdiagnosis #ThisIsFibro

Quick Fibromyalgia Diagnosis

First off, bless my doctor. My husband and I had fairly recently moved to a small town, bordering on the “boonies” of Michigan. I had just switched to having him as my general practitioner the year before the roving pain had begun.

After my recent diagnosis of ADD in the spring of 2018 just before our trip out to California, here I was, once again, sitting in his office in tears. I could tell that he thought I was just a stressed-out mess, but I tried my best to explain that this is all something new. He brought up the term Fibromyalgia, but he admitted he didn’t know much about it. I hadn’t even heard the term before.

He ordered thorough blood work and an appointment with an immunologist. All tests came up with normal results-no issues. My fears of the Big-C were alleviated.

Teal line drawing of a lotus on white

In True Teacher-Fashion

Being the teacher and learner, I am, I began to research all things Fibromyalgia. I found some good information and some that were pretty detrimental. One really helpful website has been by Donna, who explains her own journey-first with Fibromyalgia and then with the additional diagnosis of Lyme Disease. She has spent a lot of time researching and then sharing with fairly impartial information that is backed up by dependable research. It was her Fibro 101 page that connected me to all sorts of helpful information.

Me, brown hair and glasses, peaking out from the novel THE SEVENTH WISH which I was reading to my 6th grade  Reading Workshop classes.

Saved Up Sick Days

Meanwhile, things at work had gotten impossible. On December 7, 2018, I called in sick. This was not a usual thing for me. And in fact, after officially announcing my retirement for May 31, 2019, I planned on getting a nice lump sum of money for all my sick days.

That wasn’t meant to be. After a weekend in bed, I couldn’t go in on Monday, then Tuesday, then Wednesday… I contacted my personnel director who let me know that I could go on long-term leave. “You have enough days saved up to cover the rest of the year and some.”

Teal line drawing of a lotus on white

Long-term Leave Turns Permanent

So, after my GP wrote a letter, I began what I thought would be a month or two of self care before returning to teaching. But the days came and went. I spent a lot of time in bed. I hurt. I was exhausted.

Fortunately, I was invited to a yoga Breathwork session in a nearby town. The yoga studio was friendly, and the owner/main teacher focused her classes on healing and growing. I began to slowly learn about breathing techniques and slow, focused, healing movement.

Yet, at the end of April, it was evident I couldn’t go back. Even if I was doing well, the hour drive there and back and the intense energy output the 8 hour day required, wouldn’t allow me to do the self-care protocol that was slowly helping me to have better days. So, with my 55th birthday that May and 32-years under my belt, I filed for retirement, letting go the goal of teaching for years to come.

Teaching Benefits

During the months I had off, I viewed my job as one of self-care and healing. I had an appointment to meet with a pain specialist in the city health system an hour away. However, when I looked up her focus, it only talked about chronic pain due to car accidents and the like. I didn’t feel like she would be a good fit.

So, I searched the word fibromyalgia on the hospital’s website. One article came up. As I read it, Fibromyalgia Myths and Facts, I recognized the health provider’s name. I had taught all three of his wonderful children and worked with his wife for years!

Teal line drawing of a lotus on white

Social Connections

Being I was friends with his wife on Facebook, I messaged her right away. Soon after, he responded. He told me of a multi-dimensional chronic pain program at the rehabilitation program in the city. He explained that I would be interviewed for 3-4 hours to determine if I had Fibromyalgia. Then, if accepted, it would be a 10-week program with 2-3 4-6 hour sessions per week. I would meet with a pain specialist medical doctor, a pain psychologist, a physical therapy, and an occupational therapist.

Naively, I thought that I would get in within a couple of weeks. Then, go through 10-weeks of training and get back to teaching. The program, however, was in high demand. (Not surprising since now I know that 20% of Americans live with chronic pain.) So, I was able to start the program in June.

Good-bye, Not On My Terms

This was the hardest thing I had to do-give up control of my classroom after 32-years of teaching. As desperate as I had become, I knew it was what I had to do. Luckily, a wonderful, young teacher who had just spent the first half of the year teaching 6th grade in our district was available for the long term job.

The way I ended my teaching career was not at all the way that I had planned. In the end, I did feel good that I had passed on all of my classroom set up, my lesson plans and created materials, taught her how to teach with technology (which has ended up being very helpful the last two years), and donated to several classrooms my classroom library of 2, 500 books.

Teal line drawing of a lotus on white

What has your journey been to discover what’s wrong? The more we share with one another, I believe the better the process of diagnosis will get for others. The fact that doctors tend to treat one issue at a time not looking at the whole person is one that is slowly changing for the better. More and more the mind/body connection is being acknowledged.

teal line drawn waterlily with teal lettering of the title and motto

New Year Resolution: Planning to Live PurposeFULLY

I have always felt that I handled change pretty well. During my teaching career, I often would be the person who would dive into changes (as long as I believed in them) and help others make the jump. This year, after getting to the point where I feel I can make plans and follow through with goals, etc., I’m now also dealing with the transition from work-life to my retirement-life. I’m far from being bored. As I’ve said, I feel like a kid in a candy store. I really want to try almost everything (not skydiving, though).

I’m excited, but also overwhelmed. Partly, my ADD leads me to scamper from one project to the next. That was a good skill in past years; as a teacher and mom, I could multi-task with the best.

However, now this scatteredness is causing me stress. For example, I’ll start dishes but then realize that (as the water-fills up the sink) I can go throw in a load of laundry. From there, I see the cat food needs filling. Realizing the water in the sink might overflow momentarily, I head back to the kitchen, still holding the bag of cat food which I sit on the counter so I see it when I go back into the laundry room. With the water just turned off in nick of time, I wash a cup which makes me realize that I haven’t drunk any water yet this morning, so I get the teapot to fill with water…

Time Slips Away

This type of scatteredness ends up with me fatigued and a bit frazzled on my bed, the untouched tea still on the counter in the kitchen, a few clean dishes drying as the hot wash water is cooling still half-full of dishes, washing machine beeping it’s done, and the cat who has now knocked his food bag onto the floor, eating the bits that have spilled out. Eventually, I get all the started things done, generally that same day, but time seems to slip away without me truly focusing on what I want to be doing in this new place in my life.

On this online program that I purchased yearly for $12,
I could duplicate items,
add in links to documents, videos, etc,
put in specific notes that would remind me of what I needed,
and I could share it with others.

As a teacher, my time was very scheduled and orderly. Each day I knew, for the most part, what I would be able to accomplish. I would make my list on sticky notes or in my on-line lesson planner to keep me focused during my “free times”. If I didn’t get something done, I’d move it to the next day without too much of a struggle. Albeit, the stress to always do and get things done did end in my leaving teaching due to developing Fibromyalgia, so I’m not suggesting this is a good way to live.

Focusing on the PurposeFULL

What I am needing is a direction. Each day can be eaten up by things that call at the moment but don’t add up to anything meaningful.

This past year, I focused on my health, working towards lessening the symptoms of fibromyalgia which had brought me to halt. While I still need to do this daily, this coming year, I want to grow, learn, contribute in a purposeful way. For me, I know that to do this, I have to be purposeful in my moment to moment choices.

Last week, after feeling overwhelmed with what I want to do vs what I have to do vs what I think others expect of me, I decided to put it all down. I ended up first prioritizing my areas of focus.

I color-coded my five priorities:
Get/Be Well
Nurture Family
Connect w/Friends
Pursuing Passions
Making Money
I searched for an online program like the one I used for my lesson-planning; however, most that I found focused on business and productivity. I did find one program ( that suited the individual that had a good structure for developing purposeful, daily scheduling. They focused on the roles you play in your life: friend, spouse, parent, etc. I think I could make my 5 Goals fit that. Unfortunately, the cost was $156 per year-way to steep for me.
This is the first time I’ve won something since 1976 (6th grade)!
Thank you!
Last month, I won a Warrior Life Planner created by Mckenna Harwell, a 28-year-old spoonie, dealing with chronic endometriosis. I have the complete version of the 2020 planner. This has a wealth of ways to keep yourself on track while dealing with a chronic illness: medication lists w/check-off, doctor info with visit dates and note space, insurance info, and year goals, just to name a few. For a review of last year’s model, read Michelle Curtis’s interview with Harwell at this link:Mckenna Harwell & the Warrior Life Planner, January’s ZP Hero. The version I have is a paper/pencil journal, and because of this, I know I won’t really use it. I’ve decided to give it to a woman, who hates using technology and is dealing with chronic illness and all it has to encompass, and I know she will put it to good use. On the Warrior Life Planner Website does have an ultra-lite version you can get as a digital download to create your own planner binder.

So that brings me back to what I currently use for organizing: Google Calendar for events and reminders, Google Keep for lists such as my current meds, doctors’ info, camping supplies, and blog post ideas, and a paper monthly calendar I share with my husband. These things help me stay on top of things fairly well and are at my fingertips pretty much where ever I am; however, they have only been for putting down actual appointments I’ve made, not focused on what I’m actually spending my time on and surely not helping me focus on my priorities.

I’ve come up with a plan for Google Calendar:
Because this is a holiday week, I have a lot of Nurture Family time allotted
and not much Money Making!
  • When I make an event, I am color-coding for how it fits into my 5 goals.
  • I can repeat an event very easily.
  • I can delete or change the date or time for any event without a problem. This is important that I can be flexible when I never know when a day or more is going to be a wash due to a fibro flare.
  • In the event creation screen, I can add details, documents, or links to help me remember information. This is especially helpful for doctor’s appointments. If I don’t write it down, I often forget to bring up a question or concern.
Note that I have a question for my next check-up
to askabout ruling outSjogren’s Syndrome.
I had never heard of it before until it was mentioned in
Facebook Group FIBRO CONNECT. I have many of the symptoms.
I’ve added a link that was shared that talks about what it is
so that I can share it with my doctor.
  • I can add the address for the place of the event which allows me to click it to bring up Google Maps. I tend to get lost easily (not a symptom of fibro; I’ve always been directionally challenged).
  • I can invite family/friends to an event that helps them to remember we have it scheduled or to know if I will need help.
  • I can add as many reminders as I want. I generally have one email of one day ahead and then a message one hour before. I can’t tell you how much this has saved me since I’ve been using it.
  • I am now adding in not just officially scheduled events like doctors’ appointments or hair cuts, but putting in my own daily things like yoga, family, writing, etc times.
I’m feeling pretty good about this new system. If I had programming knowledge, I do think it would be great to create a wellness warrior’s online life planner, but this new way of scheduling in Google Calendar (with the addition of lists in Google Keep) looks to be promising. It’s really ridiculous how I love organizing. I think it makes me feel like I’m actually in control. Ha! Ha!

PS-I’ve also fixed up my GoogleKeep notes, color-coding for the 5 Goals and putting the goal label on them so that I can search say “health” and on the screen comes up all my notes for doctors, medications, history, etc. for ease of reviewing, sharing, and updating. (Oh, and I can add reminders to the notes if needed or put a link to the note in my Google Calendar.)

What do you do to help you live your life purposefully? I’d love to learn from you. What are your strategies?

Thank you for visiting my blog today.

I am committing to posting once a week on Fridays. However, as you know,

my new normal means that some times I have to listen to my body and am
not able to follow through as planned. Thank you for your understanding.

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