Real and Amazing Mom of two, Leanne Schaffhauser gives us an honest glimpse into her world of living and parenting with Fibromyalgia.
1. Tell us a little bit about yourself and your family.
I am originally from Florida, as is my husband, Jacob. We met there and married very young (I was 20, he was 22), and moved to upstate NY when he received his first job offer from IBM. I finished my teaching degree at a SUNY college and we both finished our masters degree at Binghamton University before we had kids. (MBA for him, Literacy Education for me.)
So, I am an educator with a masters degree in literacy education who stays home with her kids, so I HAVE to have some role in their education. I organize a cooperative learning group for 4 of my friends and their kids. We've been meeting once a week since our older kids were preschool aged. We still meet regularly to teach our 4 year-olds to help prepare them for kindergarten. I also am actively involved in my son's PTA, and wish I could be his full-time teacher.
Lucas, who is now 7 and in first grade, has high functioning autism, or Aspergers, as it used to be diagnosed. He is sweet, outgoing, academic, extremely intelligent, and keeps us on our toes every day. Lilly is about to turn 4 years old, and is highly socially aware, verbal, emotional, glamorous, intelligent, yet the exact opposite of her brother in every single way. This makes for a very interesting family dynamic.
As a former educator, I find everything that my children do as fascinating, and I probably overanalyze them too much, as well as my impact on their development. However, I think this has contributed significantly to the amount of progress that Lucas has made in his therapies. His new special education teacher actually commented to me early in the school year at how she noticed that he is extremely self aware, a trait that I intentionally, and probably unintentionally, instill in my children. “You can’t do better if you don’t know better,” I always say to Lucas. Likewise, you can’t play on your strengths without knowing those strengths. Now, if only I could take my own advice!
Listening to my own advice is something that I have been trying to do recently, since I have been diagnosed with Fibromyalgia and have found myself without abilities that I once possessed. I am a do-er…a leader… a type A personality. I am not weak. I do not depend on other people. I do not slack off, show up late, or back out on commitments. Yet, I find myself doing the latter more often than not. I am a different person now because of Fibromyalgia, and I am still learning to adjust to the new “me.” Having to say no to tasks that I once would have not only volunteered to do, but actually enjoyed volunteering for: decorating the preschool for Christmas, hosting a holiday party for friends, or volunteering in my son’s classroom. The shift of domestic responsibilities has shifted largely to my husband, as I have had increasing difficultly doing the more strenuous household chores. Luckily, I am blessed with support in that area, so the children are not at all affected negatively by marrital spats. If anything, it is probably good for them to have a male role model doing chores that are traditionally done by women. :o)
2. Can you briefly explain what Fibromyalgia is? What has your experience been living with Fibromyalgia Syndrome?
Fibromyalgia is a disorder that is characterized by widespread pain, due to the way the brain process pain signals. Fatigue, sleep, memory and mood issues are also associated with fibromyalgia, all of which I experience. I do not know that feeling of falling asleep at night and waking up in the morning. I wake up at least every hour at night, which is something new since all of my fibro symptoms started. I never feel alert, awake, refreshed, or whatever you want to call it. I could lay down and take a nap at any time of the day!
I am on medication for anxiety, because my brain never stops thinking about what I need to do, what might happen, or the what ifs of a situation. A stressful situation will send me overboard. I avoid drama at all costs. I cannot have any relationships with people who like drama. I can’t physically take it! That is not to say I avoid confrontation. Anyone who knows me well, knows that I have no problem speaking my mind. I’ve learned that usually that is the best way to avoid drama. Speak up at the time and respectfully settle things. I can’t let things fester.
My memory used to be great. I was sharp as a whip. Now, I open the refrigerator while I’m cooking and forgot what I went in there for…while I’m cooking! Like, within 3 seconds I forget something. It’s ridiculous. I have to keep notes on my phone now, because I know I’ll forget things.
All of these symptoms started around the same time. Fibromyalgia can start from a sudden traumatic event, like a surgery or injury, or symptoms can come on gradually. After Lilly was born, I herniated a disc in my back and went through physical therapy to help correct it. After PT ended and my back was feeling better, I noticed that I had an all over pain that wouldn’t go away. That’s when all the other symptoms started and they just got gradually worse. Then last spring I had my tonsils removed. After that all my symptoms, especially my pain, increased significantly. I was officially diagnosed with fibromyalgia this past fall.
3. How has it impacted your parenting style and abilities?
Fibromyalgia has certainly affected my parenting abilities. Without the support of close friends, I wouldn't be able to get out and do the things with my kids that I want to do. For example, having a fellow mom with me to go and rescue my daughter from the top of the jungle gym that I can't maneuver is invaluable! My friends also take care of my kids for the countless doctor check ups and pain management appointments that I need to attend. Also, my husband can only take so much complaining about my pain. I'm sure Jacob is grateful for my friends sharing some of that burden.
4. What are some ways that you ensure Self-care to manage your symptoms and help you get through each day?
As for self-care, making time for it is just a must. I try to wake up 15 minutes before the kids to do my stretches.
Lilly’s preschool time is taken up by physical therapy and doctors appointments. Tuesdays I go to aquatic physical therapy. Wednesday I go to OT for my hand (carpal tunnel), then I go and get my immunization therapy shots (unrelated to fibro), and on Thursdays I do physical therapy in the gym.
On the other days of the week, I am really struggling to find a good routine for working up to my walking stamina. My SI joint is extremely unstable right now, and I just got injections in that joint a couple days ago so I have high hopes that they will help reduce my pain some. It is really hard to motivate myself to go for a walk when I am in pain even though I know that is the best thing for my pain.
5. With all that you do, how do you find and/or make time for YOU - taking care of yourself, nurturing your marriage, etc?
My husband and I have taken two short trips away together since my 7 year old was born, thanks to family members who were willing to care for our kids while we were away. We don't have family in the area or hands-on grandparents for our kids, so we don't have "built in baby sitters" in our support system like some families do. But, we do the best we can with what we have, making a priority of spending time together after the kids go to bed.
As for making time for myself, I don't really. At least, not very often. Jacob is great about watching the kids to let me get away, but if I have that free time, I am usually so fatigued that I just want to take a nap! I also have a babysitter come once a week for 2 hours to give undivided attention to Lilly. I usually waste that time doing laundry or something.
6. Please share anything else you’d like us to know.
I also forgot to mention about all the allergies our family deals with. Lilly is allergic to eggs. Lucas is anaphylactic to eggs and fish and allergic to pork and cucumbers. He also has Eosinophilic Esophagitis disease, which causes inflammation and lesions in his esophagus from food and/or environmental allergies. Right now we are doing a food elimination diet to figure out what he is allergic to for that disease, so he cannot eat dairy, wheat, peanuts, tree nuts either. He gets endoscopes after every food we reintroduce. His 5th scope is scheduled for mid-December. Thank God for our medical insurance. Otherwise, we would be bankrupt!
