Fibro Warrior of the Week (#63)
Location: Brick, New Jersey, USA
Mantra: Our first mantra was “Now what?” because we had so many weird health things going on in our family. Now my mantra is “There is no rush!” because I tend to want to zoom through things before I run out of energy.
Michelle Weslager has faced some serious health issues in her life, including Fibromyalgia. She is also the mother to three teenagers that also have health issues. Her main focus is to care for her children and to make sure they all get a good education in addition to health care. And on top of all that, she wants to reinvent the can opener…
FD: : Tell us a bit about yourself – Where were you born, where do you live now, family, interests, etc.
Michelle: I was born in northern NJ, lived in Maryland for about ten years after we got married, and now I live at the Jersey Shore. My husband and I have been married for nineteen years. We have three children – all teenagers. They also have various health needs. Since I’ve been sick, my interests have almost exclusively focused on getting my kids the services they need through the community and the school system. My goal right now is to get everyone through high school and into secondary education.
FD: When did you first suspect that something wasn’t right? What happened?
Michelle: Looking back I can see that something wasn’t right for a very long time, certainly since I was a teenager and maybe farther back than that. I’ve had three significant concussions since I was six. I also had mono when I was six. When I was a teenager, I noticed that I got tired more easily and I started to get joint pain. This continued through college. Things didn’t really start to get noticeable until I had my babies. I had some weird life threatening things happen to me in my late 20’s. I had a traumatic birth with my second child, a cardiac arrhythmia, and a pulmonary embolism in 2001. This is when I think I had my first Fibro flare. Then I had a concussion in 2007 that majorly messed me up and I think that send me into a very bad flare.
FD: When were you diagnosed with Fibromyalgia?
Michelle: I was diagnosed with Fibromyalgia in July of 2013. At the same time I was diagnosed with Lupus and Sjogren’s.
FD: When you received your diagnosis, how did it affect you?
Michelle: Relief! Finally there was a reason for all the weirdness! It’s scary to not know why I was facing my mortality on a regular basis. I also wasted a lot of time thinking the health problems I was having meant I was a bad person or a hysterical woman or something like that.
FD: Since then, how has your outlook on life changed?
Michelle: Now I know what I’m dealing with. I know it’s not because I’m a complainer or a bad person. I’m empowered to face these challenges head on.
FD: How does Fibro affect your day-to-day life?
Michelle: My day to day functioning level is not very high. I’m better than I was a year ago. I can’t work. Some days I go from couch to bed to couch to bed. Other days I can do some light stuff around the house. I get chronic migraines (I just spent three months with a migraine almost every day) and this affects my functioning level A LOT. I have joint pain which affects the amount of moving around and physical stuff I can do. My focus has been on my children – I try to be as available as possible for them and do what I can do for their school needs and medical care.
FD: What can’t you do anymore because of Fibro?
Michelle: Drive, cross stitch, read books (I do a lot of skimming and reading beginning and ends), crochet, cook, lift things, most housework, going outside before 4 PM except for appointments, going to the beach or boardwalk, going to amusement parks, writing articles,going to church, going to Bible study, public speaking. Anything that involves my brain or body has been affected.
FD: Name something you do now that you never would have imagined happening before your diagnosis.
Michelle: Math. I used to be terrible at math and very good with reading and writing. Now reading and writing are very hard and math is relaxing. It’s very weird. After I had my latest concussion, I also became somewhat ambidextrous.
FD: : What has been your experience with seeking medical treatment for Fibro?
Michelle: Very challenging. It took many years to get a diagnosis. The frustrating thing for me is that all along I had told doctors very specific things that they didn’t pick up on as being from Fibro or autoimmune issues. It looks obvious to me now, hindsight is 20/20, but I wish someone had picked up on it sooner. It would have saved me some misery and definitely helped my self esteem!
FD: How has Fibro affected your relationships, friends, family, partners?
Michelle: I had my concussion in 2007, the day we moved into our house in NJ. Since we were in a new place and since I was very disabled by the injury and what I think now was a severe flare, I never got to make any meaningful relationships with people. We are church goers, but when I’m ill (which is most of the time) I can’t go. I feel like I really am someone who falls through the cracks in society. My immediate family is wonderful and my neighbors are great. Basically, unless someone comes to me I rarely see them. My husband has been amazing. I would not be doing as well as I am without him. My kids have learned empathy. My illness has been very hard on my husband and children, though. It’s hard on them to see me suffer and it’s hard that I can’t do most of the things I used to do.
FD: What is the biggest challenge you face living with Fibro?
Michelle: Not knowing how I’m going to feel day to day. Also, it’s difficult when new symptoms crop up. I feel like there should be limits like, “Ok, I’m learning to live with my shoulders hurting, but now my hands hurt too! That’s not allowed!” Fibro doesn’t care but I do!
FD: What inspires you to keep on fighting?
Michelle: My family. My faith. I’m also very stubborn.
FD: What advice do you have for other people who are living with Fibro?
Michelle: If you’re not happy with a doctor, get a new one. Sticking with a doctor who isn’t helping can actually make things worse. Also, positive thinking really does help even though sometimes it feels like there’s nothing positive to think about.
FD: Sometimes humor provides relief when dealing with chronic illness. Do you have a funny Fibro story you can share?
Michelle: This spring I began having defective can openers. One fell apart and I asked my husband to buy a new one. He did, but it didn’t work. I got really frustrated that we had this new can opener that wasn’t working so I threw it out and told him to get a can opener that works! He bought another one – same problem. I threw that one out and he bought another one. I decided that I needed to reverse engineer these can openers (my husband is an engineer and I guess I picked that up from him) and see what was their problem. So I very carefully put the can opener on the can and watched it pierce the lid and then I turned the knob and… my hand let go of the handle just enough to stop it from working. The problem was me! That’s when I realized that I had been having pain in my wrists and hands and I was dropping things and things weren’t working for me because my hands weren’t working properly. I got “locked out” of a doctor’s office this week – same problem.
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