Welcome to the Forever Fibromyalgia
Chronically Awesome Blog from Monica Radtke
My name is Monica Radtke. Welcome to Forever Fibromyalgia, my Chronically Awesome Blog. Let me tell you about myself. I am 47 years old and have lived in Minnesota my entire life. I was diagnosed with Fibromyalgia in September of 2007. I deal with migraines, metabolic acidosis, lymphocytic colitis, lumbar radiculopathy, hypokalemia, degenerative disc disease, and eczema which only add to the mix.
When I was diagnosed with Fibromyalgia, I knew what it was, but I never truly thought of what having the disease meant to me. In the ten years since I have grown to understand that there is as much good information out there about fibromyalgia as there is bad.
About Me: Before Forever Fibromyalgia
I had a great childhood. I was an only child who got good grades, never got sick (I did have migraines as a teenager), and wanted to be a motivational/public speaker at the age of 17. People say ‘be what you wanted to be at nine years old.’ For the longest time, I thought I’d be the first woman NASCAR mechanic or a professional wrestling promoter.
After graduating from high school with honors, I had no idea what I wanted to do or be. I was going through the motions of attending college which made no sense. After quitting at age 22, going back at 35 was rough, but I got an Associate of Applied Science degree in Building Inspection Technology, and it was satisfying. I also have to give credit to Toastmasters. It has kept me motivated to excel and be that motivational speaker I longed to accomplish.
How It Happened, Maybe: Becoming Forever Fibromyalgia
I was involved in a car accident on April 26, 1995, and it is with that, I believe, my health problems began. If it wasn’t then, it was in mid-1999 after having my gallbladder removed. That was followed by pancreatitis, two herniated cervical discs fused, a hysterectomy, low back disc fusion, and ankle fusion. I feel like I should glow from X-rays and set metal detectors off – not really, but part of me did worry.
About That Research
After being diagnosed, I spent most of the next year researching Fibromyalgia. There is so much to research about fibromyalgia, in many fields of medicine. Thank goodness for the Internet! Of course reading information on the Internet is to be done very carefully. Consistency is rule number one. If enough websites say the same thing, they are more likely 90% or better reliable. No website is 100%.
Fibromyalgia research goes in a million directions. Genetics, injury, lifestyle, brain function, hormones, stress. I have read miles of material on Fibromyalgia, and although over the years strides have been made, all of it has gone slowly.
Rheumatology, Physical Medicine, and Rehabilitation, Neurology, Infectious Disease, Immunology, Urology, Gastroenterology, Gynecology, Endocrinology. At some point, most of us will encounter one or more of these specialists. I would recommend finding Internal Medicine doctor that understands Fibromyalgia versus a Family Practice doctor. Doctors that continue education, learning new methods and treatments are far better than those who stick with what they learned in medical school and do not grow beyond what they need for their practice.
Over the years I have tried many things for pain management. I have been on a long list of medications for Fibro ranging from anti-depressants to high-powered narcotics. I have been on muscle relaxers, anti-seizure, and nerve medications. I know that for some of you medications are not an option out of choice or necessity. Medication management should be taken seriously by someone who understands pain management.
I’ve read motivational stories, poems, and sayings for years to put things in perspective and help others to understand life with chronic pain from Fibromyalgia. I try to keep the following in mind to help me day-to-day:
- The Spoon Theory – In 2003 Christine Miserandino wrote this story, and once I had read it, it became the basis for helping myself as well as outsiders understand what I am going through
- Quarter Mile At A Time – yes, a movie cliché, but it makes sense because I see it as my long term life right now and how it is out of reach
- Opportunity – ALWAYS! I used this for jobs, but it applies to life every day – learn, adapt
- Respect Yourself First, Then Others – if you can’t be comfortable with yourself, how can you expect others t
- Everything Happens For A Reason – Good Or Bad – CHOICES: this one I knew WAY before Fibromyalgia entered my life. I made choices to get where I am, and I often think it came down to the good, bad, and the ugly
Know Your Fibromyalgia Limits
One of the things I’ve learned is that everybody suffers differently. It’s nice to have support from others like me, but not everybody is like me. Remembering that helps tremendously. Not everyone experiences Fibromyalgia in the same way or to the same extent.
My greatest battle since my diagnosis deals with limitations – I never had any limits before Fibromyalgia. I worked full time and kept a social lifestyle. I went to school part time for several years too. I had to keep moving no matter what. I love to learn – medically, professionally, personally.
I had to learn that I had limits. My body would just ‘shut off.’ I could not even push myself. Mentally, I lost control of what was once an impeccable memory for phone numbers, calendars/dates, and organization. Now I write everything down.
Physically shutting down is the worst feeling. Somehow. all of my muscles keep me walking, talking, and doing whatever I’m trying to do. I feel heavy, like a brick, on the outside but my insides are buzzing like bees. It is very uncomfortable. I am fortunate enough to have a full-time job.Still, I wonder how long I can last. Three to four times a month I have a couple of days of nauseating, uncontrollable widespread pain.
(Jules: Click on the image to the left to get a better understanding of the 18 Fibromyalgia Tender Points that can be the source of the pain Monica is talking about. These tender points are also used by doctors to diagnose Fibromyalgia)
There are so many things that I could say, should say, and want to say to the newly diagnosed patient with Fibromyalgia. The most important thing you can do is read, learn, accept, and adapt. We can get close to life as we knew it before, but first, we have to come to terms with this condition, learn about how fibromyalgia impacts you as an individual, and work on the skills you need to adapt. Find a support group or someone to talk to that you trust and who understands what you are going through. A support group or an individual who has lived with Fibromyalgia day-to-day understands the good days and the bad days and can give you the
tricks of the trade” when it comes to living Forever Fibromyalgia.
There is no failsafe method that works for everybody, but you will find help and support that works for you. Take one breath at a time, one step at a time, one day at a time. Look at each new day as a new opportunity.
Every day I try to remember a quote by Lawrence Fishburne in ‘The Matrix,’
‘I don’t believe it is a question of hope. I believe it is a question of time’.
Monica, Chronically Awesome Forever Fibromyalgia
If you are interested in writing about Fibromyalgia, or any Chronically Awesome condition, email us at firstname.lastname@example.org and tell us about yourself. We are looking for stories about how you live with your condition in a Chronically Awesome way so that newly diagnosed patients can understand what life can really be like with their new diagnosis.