Fibro Warrior of the Week (#27)
FWOTW: Marianne Russo and her daughter, Ali.
Location: New York
Marianne’s Website: The Life Unexpected
Mantra: You are your child’s best advocate, if not you then who, become a strong educated parent.
Marianne Russo advocates on behalf of her teenage daughter, Ali, who has Fibromyalgia, as well as for parents and children who are affected by other diseases/ disabilities. This interview is a bit different in that we’ve combined both ladies into one interview, a sort of double-trouble Fibro Warrior duo!
FD: : Tell us a bit about yourself – Where were you born, where do you live now, family, interests, etc.
Marianne: I am the president and host of The Coffee Klatch Special Needs Talk Radio Network providing excellence in broadcasting for the special needs community. I was born on Long Island, New York, am married and have three daughters. My youngest daughter, Ali, has juvenile Fibromyalgia and Chronic Fatigue Syndrome (CFS) which has taken us on a difficult and heart wrenching journey to find a diagnosis, effective treatments and the respect she deserves.
FD: When did you first suspect that something wasn’t right? What happened?
Marianne: My youngest daughter was 13 when she began having intense phantom pains which originally would focus on one part of her body at a time. She was always a happy go lucky, healthy, outgoing and active child and tween and then her life very suddenly changed. After a head injury and concussion it began. It started with excruciating ear, face and jaw pain which lasted eight months with absolutely no relief. We saw every ENT, maxillofacial specialists, virologist, immunologist, palliative care specialist and neurologist imaginable and no one could find any cause for the agony she was in. Finally an acupuncturist got her out of the intense ear pain although constant discomfort and sound sensitivity remained. Soon after she had a viral infection which started the intense fatigue and wide spread pain. Her body pain seemed to move throughout her body sometimes within days and sometimes within hours. It would move from her neck to her feet to her legs to just about everywhere with an intensity that was like nothing we had ever seen. The body pain was crippling, but the migraines were absolutely intolerable landing her in the hospital weekly and eventually in the intensive care unit for a week. Even then, no one could explain or diminish the pain no matter what medications or off label approach was tried. It became so bad that she was unable to go out and needed a wheelchair for outings. The days were horrible but the evenings were absolute hell with endless nights of just holding her in my arms and rocking her to try to offer some even small amount of comfort.
There were doctors that were baffled and relentless in their pursuit in finding an answer and there were those that chalked it up to a “suck it up” or “its all in her head” mentality. In all, we spent three years and saw over twenty specialists as her condition only worsened. We were devastated and losing hope that we would ever have our daughter back again.
FD: When was your child diagnosed with Fibromyalgia?
Marianne: Although my husband and I suspected Fibromyalgia and CFS, we found that even though many of the doctors we saw felt it was a likely diagnosis none would commit to the label for a young teen leaving us frustrated and with no direction. Finally we saw an incredible doctor doing research on adolescent Fibromyalgia as it relates to the mitochondria and metabolic muscle disease who ran extensive tests and made the formal diagnosis. We then saw Dr. Derek Enlander who confirmed and advised us on the disorder. We began to seek treatment options from not only the United States, but all over the world. I soon learned that just like so many other disorders, there seems to be different causes, different presentations, different treatments, and no one size fits all answer.
FD: When you received your child’s diagnosis, how did it affect you?
Marianne: When we finally received her diagnosis we just broke down in tears right there in the office. After years of searching and at times being dismissed and mistreated by so many, just the validation alone was a huge weight lifted. We felt hope for the first time in a long time. That euphoria did not last long as we soon had to face the harsh reality that having a diagnosis does not always lead to effective treatment and that there was much trial and error ahead. We have stayed the course, made difficult medication and treatment decisions and lost much sleep over the next year.
FD: Since then, how has your outlook on life changed?
Marianne: As a mother, there is nothing more painful than seeing your child suffer but my suffering has been nothing compared to what she has endured. Not only has my daughter’s health changed but SHE has changed and has become mature beyond her years. Bitter sweet. I’ve learned to take things a day at a time, to put life into perspective and to remember that when it is at its worst, that this too shall pass. Although she is still terribly affected by the disorder, she is improving, she is learning and she is fighting to regain her life. She is the warrior.
My hope in doing this interview is to reach out to any parent who may have a child in pain, suffering both physically and emotionally and offer an important message. Please understand that not being listened to or understood, being dismissed or disregarded creates additional stress which worsens ANY physical condition. Unfortunately many children, teens as well as adults, suffer for years before they are given a diagnosis or name for their suffering. The most important things to give a suffering child or adult are respect and hope. Without respect, hope, and validation there is self doubt and the lack of perseverance essential to both physical and emotional healing. If you instill in a child or teen doubt that what they know is real (their pain), you cause horrendous damage because so often— due to stigma so rampant in today’s society— if a person is repeatedly told “it’s all in your head”, they just may start to believe it and never find the answers and effective treatments they so desperately need.
My fear is that if parents or caregivers are told that the pain or illness is all in their child’s head, if a parent puts all their faith in quick and erroneous judgements, they will stop looking for answers to help their child and even worse, lose the trust of that child. These kids have already lost faith in most of the doctors that they once thought would help them, to lose faith in their parents would be the biggest tragedy of all.
My daughter, now 17, would like to give you her replies to your questions and encourage other teens going through the same struggles she is.
FD: How does Fibro affect your day-to-day life?
Ali: Pain makes it difficult to go out with friends and enjoy everyday life. Having to organize meals around medications can make eating unenjoyable. Having to decide whether you can do two things in one week is very hard on a teenager and often times I decide not do something I enjoy because the price I will have to pay is just too great. School is very difficult for teens with fibromyalgia. Along with the pain comes the brain fog, sensory issues, stomach problems and complete exhaustion of getting through the day. After being up until two or three in the morning in pain, waking at seven in the morning is impossible. Getting a good IEP with accommodations that offer shorter school days, late starts or if needed a change in course selection has helped. Having fibromyalgia understood and classified as a medical condition and accommodated is a tremendous support.
FD: What can’t you do anymore because of Fibro?
Ali: I always loved track and field at school; now I can’t compete and miss both the physical and social aspect of sports. I am also unable to do normal daily tasks without a severe pain flare. With pain flairs having so many triggers, it is hard to make plans with friends to do anything knowing that a change in weather or unknown trigger can make you have to cancel. Traveling is very difficult because long car rides, ear pain with flying, and sleeping in an uncomfortable bed brings on a flare that can last for weeks.
FD: Name something you do now that you never would have imagined happening before your diagnosis.
Ali: Going to a new doctor every week was very difficult for many years. The side effects and disappointment in trying different kinds of medications or treatments was very exhausting both physically and emotionally, I’ve learned not to get my hopes up because the disappointment is too overwhelming. One thing that I never would have imagined was having to wrap myself in heating pads and heating blankets just to be able to get comfortable enough to fall asleep.
FD: What has been your experience with seeking medical treatment for Fibro?
Ali: Seeking medical treatment for Fibro has been very difficult. Not many doctors are informed about Fibromyalgia, making a diagnosis and getting treatment very difficult. Not being listened to and being disregarded by many of the doctors was really horrible and hurtful, but finding the ones that got it made a big difference in my outlook.
FD: How has Fibro affected your relationships, friends, family, partners?
Ali: Family and friends have always been supportive of my illness. I have realized through my illness which people are truly there for me.
FD: What is the biggest challenge you face living with Fibro?
Ali: Learning to live with constant pain.
FD: What inspires you to keep on fighting?
Ali: Friends and family’s support helps me keep on fighting. Hoping that tomorrow will be better than today helps me get through it.
FD: What advice do you have for other people who are living with Fibro?
Ali: Don’t give up—if it doesn’t heal today, it will heal tomorrow.
FD: Do you have a funny Fibro story you can share?
Ali: I wish I did … there really is nothing funny about it.
Remember, check out Marianne’s website: The Life Unexpected!
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