Fibro Warrior of the Week (#7)
FWOTW: Irene R.
Location: Western Pennsylvania, USA
Mantra: We’ve tried seemingly every approach to find my way back to health, allopathic and “alternative.” Often I think our best weapon in this adventure has been laughter.
What can we all learn from our seventh FWOTW? Everything. She’s lived with Fibro for over 30 years and has other complications including CFIDS/ME. One year, she spent more days in the hospital than at home. Bedridden but not beaten, Her love of reading, family, and laughter remain strong. We are truly grateful for this interview and we’re thrilled to share this amazing story with you. -FD
FD: Tell us a bit about yourself – Where were you born, where do you live now, family, interests, etc.
Irene: I was born in New York City, to an immigrant family which came to the States with the post-WW2 migration and English is my third language. (I mention this because you can just imagine the chaos which happens in my fibro-brain when I can’t find the right word!) We moved around quite a bit, so although most of my “firsts” happened in NYC, I spent many of my childhood years in Virginia. Hubby and I moved to a small town in the western Pennsylvania area 30 years ago where we raised our kids. We love it, though my family still drives up to NYC or the NJ area quite frequently.
FD: When did you first suspect that something wasn’t right? What happened?
Irene: I came down with a severe and complicated flu while still in grad school, back in 1975. I’d never really been sick before and became so ill that my mom flew down to Virginia to take care of me – a stunning situation! I was out for approximately six weeks and returned to my life and work way too early. I pushed forward to finish my teaching obligations, my coursework, Master’s thesis and prepping for my Oral exams (as an English lit person) all due just six weeks later. I successfully passed the Orals thanks to lots of friends who helped prep me. However, looking back I now know why I had such a hard time getting all my British history straight, not to mention all the dates involved – something I’d never had a problem with before. It was the damage done to my left brain, the “numbers” side. By the time I started working on my PhD, just a few months later, I couldn’t handle it. (Ironically, I’d started out as a math major, so my left brain was always well developed.)
I spoke to doctors about what was happening to me, but back in 1976 no one had even heard of Fibromyalgia – it hadn’t even been described
At first I didn’t understand what was happening to me. I’d just met hubby-to-be (love at first sight, on a blind date, of all things! Gag!) and thought that my health problems were just my being overburdened by trying to carry on a long-distance romance between NYC and Maryland while in school. After we married, planning a wedding and commuting to work into the city from NJ couldn’t be blamed any longer. However, I then had three 10-lb. babies within three years and we kept blaming THAT on everything. I spoke to doctors about what was happening to me, but back in 1976 no one had even heard of Fibromyalgia – it hadn’t even been described – nor CFIDS/ME, and all doctors would point out how stressful my life was. I knew they were wrong. I’d always fed on so-called “stress” before.
FD: When were you diagnosed with Fibromyalgia?
Irene: It wasn’t until the mid ’80′s – it’s been so long and there’s been so much history that none of us are certain about the exact year any longer.
FD: When you received your diagnosis, how did it affect you?
Irene: It was a huge relief. I was tested for everything from lupus to MS and my results would come back normal, despite the fact that I was getting progressively worse each year but pushing myself to the max. At first the diagnosis changed very little about my life because so much was simply not understood. The Fibromyalgia committee that established the criteria didn’t even publish their results until 1990. However, it was a huge relief to have a diagnosis – I finally had validation. I wasn’t a spoiled brat nor lazy. What a relief!
FD: Since then, how has your outlook on life changed?
Irene: It’s funny. I’m harder on myself and easier on myself. Back in the day, we fibros were told, “no pain, no gain,” and I’m a product of my generation. However, my doctors knew me well. That’s what happens in a “small town.” From day 1, they were the ones who insisted that I give myself permission to not be so “perfect” and driven.
FD: How does Fibro affect your day-to-day life?
Irene: It affects every minute of every day. My insomnia is beyond severe. Because of it, my body finally stopped producing adult human growth hormone and I was literally on my deathbed in the hospital before the HGH was finally made available. I now need daily injections. Much irreparable damage was caused by the lack of HGH. My migraines are often out of control and I have required too many hospitalizations for them alone. One year I spent more days in the hospital than at home for this and that.
I’ve been told by several top specialists that I am at least five years ahead of the sickest patients they’ve ever seen. And I’m almost completely bedridden. Of course, everything is further complicated by the CFIDS/ME since there is so much overlap. What I think “healthy” people don’t understand is that the pain aspect of this illness involves your entire body and mind, unlike a broken leg, for example, where the pain would be limited to the immediate leg area and you know it’ll heal, that you’ll be cured. This truly can be a pernicious illness and can be progressively debilitating, as has been the case with me.
FD: What can’t you do anymore because of Fibro?
Irene: Do you want the truth or do you want the Pollyanna answer? LOL! Just about everything eventually changed. I can no longer stand up to take a shower because of my frighteningly low blood pressure. I fall/pass out often. I have to eat in bed. This year we had Christmas Eve, Christmas Day dinner, New Year’s Eve as well as New Year’s Day dinner around my bed – I couldn’t even handle a “token appearance” in the dining room. I haven’t been to a movie since 1997 and this from someone who often went to see three movies in one day. The list is endless. There are so many things we don’t even notice any longer because they’ve become “my normal.”
FD: Name something you do now that you never would have imagined happening before your diagnosis.
Irene: Staying in bed almost 24/7. Not taking a shower twice or three times a day, instead only a bath every week or going even longer. Not being able to run simple errands. No social life. Not being able to make it to so many of my kids’ activities when they were growing up. Again, another endless list.
FD: What has been your experience with seeking medical treatment for Fibro?
Irene: I’ve been very lucky with the fibro aspect of my care. For example, when it came to finding the pain killers that would help me, it was done so long ago that you could be hospitalized for that! They gave me a pump and after 8-12 hours of a medicine not working, I would be given a different pain killer. By the time we got through some pretty heavy meds, I thought all options had been exhausted. However, my doctors kept reassuring me there were more to try. Within a week we were, indeed, able to find a medication that helped me. Today this would take months to establish because everything is done on an out-patient basis, running back and forth to doctors’ offices. To tell you my true feelings about this? It’s barbaric and close to criminal. I know that’s a strong statement, but I absolutely believe it.
FD: How has Fibro affected your relationships, friends, family, partners?
Irene: My friends are gone, for the most part, though my BFF of 41 years has stuck by me like glue. It’s been a rough ride all too often, but our family is perhaps stronger because of my illness. I’ve been EXTREMELY lucky in that my husband and I are still together after 37 years and that I have kids who try to protect me – despite how often I need to remind them that I’m the mom and therefore, *I* rule! (LOL!) I’m so very proud of my kids. They’re adults now and I’d like to think that the patience and compassion they have in spades stems from having a mom who was in and out of hospitals for years, often for weeks at a time – or at least that’s my story and I’m sticking to it! My daughter teaches children severely affected with autism. My sons are so tender and giving to others that it almost makes me cry. (Knock on wood!)
FD: What is the biggest challenge you face living with fibro?
Irene: Not being able to do all the things I want to with my family. Having to rely on my husband or kids for everything, even the “watering and feeding” of me. The insomnia which causes me to not sleep for 24-72 hours at a time, all the time. If an “emergency” happens and by some miracle I CAN do something, there is a dear price to be paid. I am absolutely sick of hearing everyone’s unsolicited advice! If it’s out there, I’ve already tried it, thank you very much! I love to cook and bake for friends and family and that’s been taken away from me. Gardening, cleaning house, working… These have all been taken away from me by this insidious illness.
FD: What inspires you to keep on fighting?
Irene: I want there to be no more fibromyalgia or CFIDS/ME. I am particularly outraged by the state of pain management. My daughter almost died a few times a couple of years ago and had pain off the charts, losing 45 lbs in 25 days. Instead of focusing on the Crohns/UC she suddenly developed, as well as the surgeries she had to undergo, we found ourselves fighting the pain aspect of her care in “a major medical center,” instead of fighting the real monster, her Crohns/UC hybrid. I couldn’t believe this was happening to a young lady who had a very visible illness! It was daily fights with always someone along the line for her pain meds to be delivered on time or figuring out why some pain doctor randomly chose to lower her dosage during a shift without consulting us, her surgeon or seeing my daughter. That’s when I got really angry and disgusted, and vowed I would find a way to help others – because I saw that on the colorectal floor, despite my daughter having a never-seen-before, very complex case, she was not the only person getting substandard care when it came to pain. I kept wondering what was happening to those patients not as ill and who didn’t have someone by their side 24/7. They were truly in a living h*ell, I found out as I became friends or friendly with others.
I want there to have been a purpose to what I’ve gone through and what my family’s gone through.
I also hope that my own experiences help others. Yes, I realize this sounds so very corny, but don’t forget that I’ve tried to be patient for decades! I know my doctors understand this illness better because of me, but I’d like to help others directly. I want there to have been a purpose to what I’ve gone through and what my family’s gone through. And I suppose it is the teacher and mother part of me that comes out as well. This is the real reason I started my blog. I’d never even heard the word “blog” until six months into my daughter’s experience. I read my first blog just weeks before I started my own, after much encouragement (nagging) by others. I’m almost completely computer-illiterate, but I’m slowly learning and that’s turned out to be a huge blessing. I’ve reconnected with old, old friends on Facebook and made new ones via twitter. And thanks to my iPad I can do almost everything in bed, that is, when my brain cells allow!
FD: What advice do you have for other people who are living with Fibro?
Irene: Once diagnosed, rest! Get LOTS of rest! Find a doctor who not only believes in you and fibro but really knows the field well and understands the comorbidities. Not all doctors are created equally! Also, find out what works for you. We patients are all different as well. I personally do not benefit from pacing AT ALL. With me “it’s in for a penny, in for a pound.” However, pacing seems to work for some. I’ve seen theories come and go. I have a feeling I’ll see more of that in the future. So, rest. Then find out what works for you! There is no room for rigid thinking!
FD: Do you have a funny Fibro story you can share?
Irene: There are many, especially since our family loves to laugh and does a LOT of it. It’s what’s gotten us this far. But given my love of reading (I’m a pretty much a “bookaholic”) here’s an appropriate example…
When my kids were still rather young, we all happened to be in an airport bookstore one day and I was extremely tired from all the planning and packing for our vacation. I held up a book that had caught my interest and asked the seller, “does this come in paperback?” The man looked at hubs and hubs looked at the clerk and I had no answer to my seemingly simple question. I repeated, holding the book up even higher, a bit annoyed since my upper body strength has never been the greatest. I was exhausted, I was sure my makeup was rolling to my neck down from my face, I was sweating, I was becoming nauseated, my hair was getting wet from the exhaustion and all I wanted was a simple answer to a very simple question. Griding my teeth behind what I’m sure was a very fake smile, I repeated, “DOES THIS BOOK COME IN PAPERBACK?” a bit more slowly than called for.
The looks going back and forth were quickly getting on my nerves when hubby gingerly replied, “Uh, Irene…you ARE holding the book in paperback.” It took me more than a moment and a few puzzled looks at the book itself to see what he meant.
Fibro-brain had struck again!
Check out Irene online: Laughingfrommysickbed.blogspot.com/
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