Fibro Warrior of the Week (#17)
FWOTW: Lenore M Brown
Location: Hardeeville, SC , United States
Facebook: Lenore M Brown
Mantra: I’m Lenore. Love yourself first. Once you master you, the rest is a walk in the park.
Lenore M Brown is our 17th Fibro Warrior of the Week. Lenore founded her own group called @SpooniesCouch which provides not only hope to Fibromyalgia patients, but those dealing with many different kinds of medical issues. She does because otherwise you don’t, and sometimes suffers from a mean case of Bibro Frain.—FD
FD: Tell us a bit about yourself – Where were you born, where do you live now, family, interests, etc.
Lenore: I was born on a little island right across from Hilton Head Island, SC, called Daufuskie Island, SC. (Pat Conroy wrote a book about it called The Water Is Wide, subsequent movie made after.) I grew up in Brooklyn, NY for 16 years. I now reside in Hardeeville, SC. Moved back South to raise my children of which I have 3 adults and 5 grandchildren. I love dancing, reading, horror movies; I have an “abstract sense of humor”. I collect Angels. (Love Willow Tree Angels especially). Strong belief in God and that He has a purpose for us all, that we should be open to receive that purpose and run with it. It is for us and us alone to let Him show it to us and not let the world judge or choose for us. They are but mere mortals losing their way worrying about yours.
FD: When did you first suspect that something wasn’t right? What happened?
Lenore: When my muscles were hurting for no apparent reason and I started experiencing restless leg symptoms, it was still being called “crazy legs” at the time. Being medical, I just knew I had MS. I got tired of going to different doctors and just getting meds to treat every individual ache or pain without a clear understanding of what was actually wrong with me. So I went to a new doctor. He asked what’s wrong; my response was, “You tell me.” He ran the gamut of tests and when I went back, that’s where divine intervention stepped in, as the Nurse Practitioner told me she thought (Ed: what I had) was what she had, due to all the symptoms I was having. (I was also having a CFS and migraine flare at the time.) She delicately placed the dx/info out there in casual manner to the doctor. I was diagnosed and immediately was on my road to being the survivor that I am today. Not easy, but what choice do we have? If you do you’re going to hurt, if you don’t you’re going to hurt. SO I DO!!! Then I hurt.
FD: When were you diagnosed with Fibromyalgia?
Lenore: About 20 years ago. Had symptoms about 30.
FD: When you received your diagnosis, how did it affect you?
Lenore: First relief because it wasn’t MS. Then marked uncertainty about my future, how would it affect me physically, mentally & socially. Questions! What the hell is Fibromyalgia? Can it be cured, controlled…….?
FD: Since then, how has your outlook on life changed?
Lenore: Being a natural caregiver and outgoing person. It has open a whole other world for me. It actually has made me more self aware of what my purpose here on this earth is for. With The “Couch” I’ve helped quite a few people and reaching more every day.
FD: What can’t you do anymore because of Fibro?
Lenore: Make the career choices that I would like to. I’m a Dementia/Alzheimer Specialist, Activity Director and Private Duty Nurse. Have done retail management and administrative duties. I ran 2 Dementia Units. Being on 24 hr call is not possible. Anything that entails complete concentration and continued physical endurance is impossible consistently, without dire consequences for me later.
FD: Name something you do now that you never would have imagined happening before your diagnosis.
Lenore: I’m becoming a spokesperson and staunch advocate for Fibromyalgia awareness, not in the conventional manner of educating the public so much as helping Spoonies/Couchies have an open forum to be able to express with others; others who when they say “I understand”, really do. It’s an open support group that’s always available, someone is there at all times from different time zones with info from different perspectives from other states and countries to compare. The “Couch” is something that came to me after trying to explain numerous times to others that just because it appears that I’m functioning just fine I’m NOT! When I hurt and get the, “You hurting again/ helpless I can’t help you/or you always hurting” look. Or the, “They can’t give you something for that query/ I don’t know how you do it/ I couldn’t take all that pain all the time” comment. It is also my solace every time someone says they were helped or they are so glad they found us because now they are understood. I get the warm fuzzies that I’m making a difference in spite of my challenges. Without it, those people wouldn’t be getting that comfort that only we understand. The other aspect is what don’t I do now. I was a very physical person, I could always push it to the limit. Now I do as much as I can anyway, then pay for it dearly later (flare). But I’m not going to let it take charge of my life.
FD: What has been your experience with seeking medical treatment for Fibro?
Lenore: Horrendous. I can’t believe the charlatans out then pretending behind a medical degree. To say we are treated like 2nd class citizens would be an affront. Thank God, I’m medical and have an inquisitive nature. To get proper treatment. you have to research and educate yourself before going to (and I use the term loosely) medical professionals. Tell them what your thoughts are on what’s wrong with you and what meds you need, in a manner in which you have to make it seem like it’s their idea. Otherwise, they will give you Lyrica and Cymbalta and send you on your way. Apparently they watch commercials too.
FD: How has Fibro affected your relationships, friends, family, partners?
Lenore: Greatly! Being that I’m over 50, it reminds me of when Cancer was a bad word. If you had it, no one talked about it. It was taboo. Fibromyalgia is like a “don’t tell” thing. The response is usually, Oh that thing I saw on TV. What is it? You can’t take anything for it?” Then when you see them again it’s like it was in the past so it doesn’t exist anymore. If you have a flare or feel bad you get that again or, “I forgot you had that pain thing. But you’re not that sick. You did (insert activity) recently.” Well, you have to live and do certain things . Pacing becomes your Superpower. I have no support so I have to do what I got to do. I have all night to cry, walk around, rub the offending part that’s screaming for attention at the time, wallow in deep depression, contemplate other unmentionable things, then put the game face on and start the vicious cycle again. I have the “Couch “ now and it has been a real life saver for me also, more than I can explain.
FD: What is the biggest challenge you face living with Fibro?
Lenore: Feeling like an outcast, in my own personal space. I have no control over when or where a spasm, lightning pain, migraine, flare or new symptom is going to arise. Dealing with side effects of the med that works the best. Health professionals with their head in the sand. People that don’t understand and pretends that because it’s an invisible disease that it either went away, you were exaggerating, or it never existed in the first place. The sad part is (not all) most of the medical professionals feel the same way, or their favorite thing is labeling you a pill seeker. Where it is so simple cross reference DX/RX/cross indications and side effects make for a good treatment plan. You could cut out some of those pills with other alternatives.
FD: What inspires you to keep on fighting?
Lenore: The “Couch”. I was in a dark place when I created it, but I feel I’m on a mission now to help others in a nontraditional way to feel better… not necessarily in a pain sense but overall: spiritual, emotional, and with a very good social outlet which adds a sense of normalcy to our lives. Not claiming to cure or treat anything remotely like that. @SpooniesCouch’s mission statement is, “We Share Care and Support.” ( no more no less). Many are home/bedbound or disabled, some are on different functional levels and it’s not just for Fibro. Plus Fibro is such a piggyback Dx; it accompanies many other diagnoses. If it was not for it , I would not be doing this feature now.
FD: What advice do you have for other people who are living with Fibro?
Lenore: Research every diagnosis, prescription, alternative solution. Check side effects and contraindications. Know your body!!! Always double check everything and then double check it again.
FD: Do you have a funny Fibro story you can share?
Lenore: Bibro Frain fog. Did I say Fibro Brain ? That’s what I thought. LOL!
Follow Lenore on Twitter: @SpooniesCouch
Like Lenore on Facebook: Lenore M Brown
Follow Lenore on her 2nd Twitter site: @Lenore_Brown
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