Donna Isnor's Story

What were the steps leading up to your diagnosis?

No one could tell me why I was in pain and exhausted all the time. At one point I was seeing seven doctors! Finally in 1987, I saw a specialist in internal medicine. After taking my history, he performed what I now know to be the trigger point test. I nearly jumped off the table it was so painful! The one thing that tipped him off to my diagnosis was the pain in my feet! I was diagnosed with ‘fibrositis’. In the days before the internet it was very difficult to research such things, and so the only information I could find said this: "Fibrositis: A diagnosis given when no other diagnosis can be found."

To 17-year-old me, that meant I was crazy, that it wasn't real. That it was a meaningless word used to quiet patients who have nothing wrong with them. It wasn't until after my mother passed away that I was re-diagnosed. In 2000, the year after I lost my mother, I homeschooled my kids all day while my husband was in university, and I worked nights to help support our family. My pain, which had gone into remission during all three of my pregnancies, was raging through me with a vengeance!

My GP preformed the trigger point test, and had these words of wisdom for me:
"You have fibromyalgia. I don't know anything about it. Go buy a book." So I did. The first line in the book read: "Fibromyalgia, previously known as 'fibrositis'..." Then things began to click!

What accomplishment are you proud of?

In July, I was fortunate enough to be able to attend a three-week course at the Pain Clinic. Having been in bed since November, just getting up and getting there was an accomplishment! In those three weeks I learned a lot. I learned about the mechanisms of pain and ways to reset the pain response, without medication, since I can no longer take anything due to the damage to my brain and to my kidneys. I learned about how to LIVE with persistent pain. But what I learned about myself was even more important! I learned that my heart and my will are bigger and stronger than I ever thought possible!

My husband fulfilled my wish for a little therapy kitten. I knew that having a kitty would help me get better. So on Mother's Day I became Momma to a little calico kitten I named Coco Chanel. Little miss Coco is taking her job description very seriously! She started with healing my heart and helping me to overcome the fear that coming so close to death had filled me with. The terror I felt whenever my husband couldn't be with me started to diminish, because I had something else to occupy my mind and fill my heart.

But then we decided we wanted Coco to learn to walk on a leash. Remember now, I had been in bed writhing in pain as my body had to learn to deal with the pain without the aid of medications, and as I recovered from hovering at the brink for so long. So to go out and go for a walk was a miracle in itself! But I did it! I couldn't go very far, but that's ok because neither could a ten-week-old little kitty! Every day we went. And every day I got a little stronger and was able to go a little further. And now, every weekday we take her to her favorite little spot at a little pathway around a pond. We are out for at least an hour everyday, except on the weekends.

On Saturday and Sunday, we take Little Miss Coco Chanel hiking! We go for a few hours each day, and I have to rest a lot. But it's just so awesome! People love to see a cat walking on a leash in the hiking trails on the Island. They are amazed with her. If they only knew...

Who has been there for you? How?

I don't know where I would be without my husband! Oh wait! I know exactly where I'd be...

In the fall of 2013, I began getting sick. I slept all the time. In November my husband, who is in the Navy, was sailing. I was getting sicker by the day. I couldn't get out of bed. The pain multiplied, I couldn't stay awake, and I couldn't go downstairs so I wasn't eating. And my rock was on a boat in the Pacific somewhere. I made a call to the Padre in the hopes that they would send my husband home. But the request was denied.

I then did the only thing I could think of - I flew (by myself!) to my brother's so he could take care of me. I slept most of the month that I was there! I came home when the ship came in, just a few days before Christmas. I was still weak, in pain, and not able to stay awake. We did not even have a Christmas tree. The last thing I remember was New Year's Eve.

On January 15, I had a doctor's appointment. My friend Kelsey drove me to the doctor. He took one look at me and sent me directly to ER! I was admitted with the diagnosis of a kidney infection. I really do not remember. After being treated with intravenous antibiotics for a week and a half, I was discharged. I went home, went back to bed, and went back to sleep.

It was not quite a month later when early one February morning my husband put me in the car and took me back to ER. He had a hard time rousing me for my morning meds before he left for work. My ability to communicate was diminishing more and more, where when I talked I couldn't form words. When I texted, it was just a jumble of letters.

When we got to the hospital this time, things were quite a bit different! They wouldn't allow my husband past the front desk! I imagine that must have been terrifying for him. Me, well I don't remember. They had to give me four doses of whatever it is that wakes you up before they could talk to me!

I came to in the Close Observation Unit of the Neuroscience ward! I had Medication Induced Encephalopathy due to a bad combination of medications my doctor gave me. I almost died - twice! The kidney infection in January was only part of the puzzle. I now have lasting brain damage to my memory and speech pathways. I know exactly where I'd be without my husband - I would be dead. Had the ship not landed him in January to look after me, I know I would have laid in my bed and died.

What lifestyle changes have you needed to make?

After my GP gave me the diagnosis of fibromyalgia, he told me I was never going to get better, and I needed to put my kids in school and stop working and start looking after myself. The pain had already robbed me of a lot of things I enjoyed, and now this!

I am no longer as active as I'd always been. I used to love biking, and running, and oh how I loved hiking! But, alas, those days were gone! Even things like cooking and baking that I so enjoyed became too difficult for me. I became dependent on my husband for everything. He did the cooking and cleaning. He helped me shower and dress. So many days I couldn't even do the simplest of tasks.

What's your advice to someone else living with Fibromyalgia?

It's my mission now to encourage people to take responsibility for their own wellness. Check your medications carefully for drug interactions. A lot of fibromyalgia sufferers take fistfuls of pills at a time. It only takes one to throw you into a tailspin! I trusted the doctor to give me medications that would help me and wouldn’t interact with one another. I trusted the pharmacist to catch anything the doctor missed. They both dropped the ball! We have, at our literal fingertips, tools to monitor our medications, to check for negative interactions. We can't always rely on the doctor to get it right. It's a dangerous game of roulette.

The path to wellness begins by placing one foot in front of the other. We all have a choice to make. We can choose to lay in bed and die, or we can choose to get up and live. I have (finally) chosen to live.

Is there anything else we should know?

I don't have it all figured out. I have days when I can't make it all the way around the little pond. But halfway around, seeing the trees, watching Coco play, hearing the birds, and breathing in the salty sea air is so much better than hiding in my room licking my wounds. As I tell the woman I am coaching, even if you can't get out for your daily walk, at least go to the kitchen and drink your tea at the table. Be with your family. And get out of that bed before it claims you as its own!