Fibromyalgia Care Society of America | Voices of Fibro-Jenn Marusa
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Voices of Fibro-Jenn Marusa

24 Aug Voices of Fibro-Jenn Marusa

My name is Jenn Marusa, and I live in New Jersey.    I have been married for 21 years, and have 2 girls, ages 15 and 17.   I am 43 years old, a stay at home mom and a former flight attendant who has never lost my wanderlust.  I love to travel, animals, nature and spending my time outside while traveling if possible.

 

I first realized there was something different about my health when I was 20, when I started having extreme pain that never went away. I was unable to work anymore. It was another 8 years before I was diagnosed with fibromyalgia. Until then, my symptoms were classified as psychosomatic. I had chronic fatigue after my freshman year in college, my doctors say that may have been a hint at what was to come.

 

I was diagnosed at the age of 28, and finally having a diagnosis was a relief. At least it was an answer. I felt I wasn’t crazy. Fibromyalgia wasn’t well known back then, and a lot of doctors didn’t believe it was a ‘real’ illness yet. I had some doctors refuse to see me. But at least I had something to work with.

 

I work with fibromyalgia as a partner now. Some days are better than others. It’s like working with someone else, you never know who fibro will be that day. Will she be cranky and make me hurt today? Is she going to behave and let me have a good day? I must wait and see and hope for the best. You can do all the right things, and things don’t work out. You just do your best.

 

It was hard for my family at first to handle my illness, but they have learned and grown with me. I didn’t have kids when I was diagnosed, but my family have all been supportive. They want me to feel better.

 

The most challenging thing about fibro is the uncertainty. You plan for something, and you can’t make those plans, and it STINKS! You want to be able to do things. You don’t want to let people down, but you must take care of yourself.

 

I do not go around talking about my illness and symptoms, people eventually find out about my fibro, it usually comes out when I cancel plans because of a flare. My husband talks about it more than I do. People always say, ‘I had no idea!’ I don’t want sympathy, or to be treated differently.

 

Besides Fibro, I also have Arthritis, Neuropathy, Migraines, IBS, Raynaud’s, etc.

 

The best advice I have received regarding Fibromyalgia is change your diet.   I manage my fibro by trying to manage my stress, my diet, and my activity level. I’m not perfect, but those things help me. Find what works for you.

 

I’m inspired by other moms, and strong women who do a lot. I know I can’t do everything I want to do, but I love to cheer on people around me!

 

My biggest battle right now is that I have been in a huge flare for a few months. It’s included pain like I haven’t had in almost 10 years. I moved back into the US less than a year ago, so I don’t have a great set of doctors to go to when things get this way. I’m still finding my team of doctors. This can take a long time and can be frustrating. I just turn to my husband, who is my biggest fan, and he always encourages me to go on.

 

The worst thing about fibro is losing friends because they get tired of you not being able to do things because of pain. It can be lonely.   I don’t consider myself disabled at this time. I have had disabled license plates in the past, and I use a cane when the pain is extreme. But right now, things aren’t at the point that I would consider myself disabled. Everyone’s life is balanced.

 

I do suffer from depression with my Fibromyalgia.  I work with my doctor to keep it in check.

 

Some words of encouragement for others who are living with Fibro is that I wish everyone had a great support system like I do. My mother-in-law also has fibro, and my mother is chronic pain, so I have people who are in my shoes with understanding pain. My husband always supports me and is giving and loving. My kids have never known anything but a mom in pain. They are great with me, and never complain about my issues. I wish everyone had a similar experience.

 

The one thing I have learned about myself since my diagnosis is that I am stronger than I feel.

 

My advice to someone newly diagnosed is to do research, and if you don’t think your doctor is correct, go for another opinion. Try Eastern medicine. Try anything. Just don’t stop trying.

 

I would like everyone to know – “You are worth it”.

 

I raise Fibro awareness by talking at length with anyone about fibro, and sharing what I know, and my experience. Everyone’s path is different. It helps to know you are not alone. You can still have a good life. A great life. Even if it’s not what you planned.

 

I am a fibro warrior because fibro won’t win the war over my body!

1 Comment
  • was diagnosed last year with fibro after suffering with it for years, but the drugs they suggested to manage it are worse than the fibro. Pain is awful, fatigue is awful as most fibro sufferers know. I began CBD oil on July 3rd (this year)and on Friday the 13th, I did not take any pain meds. Been a daily diet of pain meds for years now. Today is Monday and still have not taken any pain meds. I walked my dog this morning and noted how great I felt, how good my back felt and my hips. I have not known this kind of relief in over 27 years.

    August 27, 2018 at 6:31 am

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