This week’s Fibro Warrior is Jody. She lives in Southern Wisconsin, the land of cheese! (Thanks, Jody, for the reminder of the food I miss the most 🙂 ) Jody was diagnosed with Fibromyalgia at 39, in June of 2009.
What lead up to your diagnosis ?
The initial symptom for me was horrible pain in both feet, to the extent that I thought bones were broken and had difficulty walking. That resolved itself in short order but then I had more ‘broken bone’ like pain in my collarbone. Once again it resolved and then the pain moved to my left elbow, a throbbing ache that made it difficult to extend my arm.
Beyond the pain, I was extremely tired and couldn’t seem to get enough sleep. I became worried and finally went to see a doctor who gave a tentative diagnosis of Fibromyalgia.
Upon moving home from North Carolina a month later, I saw a Rheumatologist I was familiar with from an Achilles tendon tear years before. He did all of the blood testing we’re familiar with, the scans as well and concluded I have Fibromyalgia along with other concurrent issues.
Were you working at the time?
I was working full time in the medical field at the time of diagnosis.
What was your family life like?
I’ve been married for 23 years and we have two adult children, a boy and a girl. Like any typical American family, we were always on the go and busy, whether that was working or play. We spent all of our free time as a family and truly enjoyed hanging out with our kids and watching them grow up.
How did your family initially handle your illness?
I was lucky because my husband’s eldest sister has RA and Fibromyalgia so the whole family had at least heard of it and knew some of what goes along with it.
In the beginning, they took it in stride and didn’t seem to be affected at all because I did a pretty good job of hiding the fact that I was ill and in pain. I managed to keep hiding the progression over the next three years until it became too much.
The last two years have been difficult on all of us as the disease has worsened. My husband and children definitely see the symptoms now. They see the damage and suffering. I can see how much it saddens and scares them and it’s heartbreaking for me to watch them go through that.
How has your family/ work situation changed since Fibromyalgia entered your life?
I managed to keep working for about six months after diagnosis but then had to quit because of the pain, exhaustion, and my memory failing (fibro-fog), which while awful for all of us. Plus, in that line of work it could have become dangerous.
My family situation is similar with the exception that they’ve had to help a lot more. I rarely drive now so they have to take me places. I also have a caregiver that comes in three times a week for a few hours to help with chores, errands and taking me to necessary appointments. My family has had to get used to a new person being in the home and the fact that I need that level of help and care now.
What do you feel is the most challenging aspect of Fibromyalgia?
This is such a hard question because living with Fibromyalgia is so difficult on every level – physical, mental and emotional, financial. Narrowing it down to one thing seems impossible but I’ll go with grieving the life that once belonged to you but Fibromyagia has stolen.
[Tweet “living with Fibromyalgia is so difficult on every level”]
Do you have any other co-existing conditions? If so, what are they and how do they impact your Fibromyalgia?
IBS, Migraines, Spastic Bladder, Pelvic Floor Dysfunction, TMJ, Small Fiber Neuropathy, High Blood Pressure, Hypothyroidism, Acid Reflux, Ulcers, inability to control internal thermostat, etc.
The list really does seem long and one thing I’ve learned is they go hand in hand and feed off of one another. If I’m in a flare, many of the other issues want to jump on the bandwagon and make it absolutely miserable. If the IBS acts up, the Fibro tends to get irritated too. And so on and so forth. That’s what makes learning how best to care for yourself so difficult.
What have you found/ done that has improved your symptoms?
The combination of medications that my doctors and I have figured out work best for me. Quiet time with loved ones. Hot showers, deep breathing exercises, soft music, reading or watching TV/movies to take my mind off it and when all else fails, sleeping.
How open are you with friends & family about your illness & symptoms?
It depends on the family member and/or friend. If I’m comfortable with them and if there is trust and communication already in place, I’m okay with sharing most aspects of being ill. But even then, it can be hard to share, especially with family when you see how it can scare them and how much they worry for you. We never want to burden anyone. Nor do we want to look pitiful and broken.
Do you blog about your illness? If so, what inspired you to do so?
I do blog about Fibro and the various ailments that go along with it. The inspiration came from someone I love and adore, Tony, who not only gave me the platform by building the blog, but also the courage to talk about being sick, publicly.
It’s become both a great method of therapy for me as well as making me feel as if I’m helping others with my story and hopefully, them being able to relate to it and not feel so alone.
What is the best advice you’ve received regarding Fibromyalgia?
Learn how to be kind to yourself because you’re going to need that now more than ever.
What was the worst advice that you followed?
I never received bad advice from anyone on how to handle being ill but I have been my own worst enemy. I’ve pushed myself relentlessly in every area and it has done nothing but make every aspect of my illness worse.
What is your favorite way to cope with your life as a spoonie?
Spending time with those I love, listening to music, reading and hot showers.
What is one thing you’ve learned about yourself since your diagnosis?
I’m not nearly so in control as I believed I was. Becoming sick has a way of showing you just how fragile and out of your control life can be.
[Tweet “Becoming sick has a way of showing you just how fragile and out of your control life can be.”]
Now that you’ve gotten to know Jody a bit, check out her blog and connect with her.
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