"Ms. Ramos you have Fibromyalgia"

As I planned out my future, fibromyalgia was never part of the plan. I vividly remember spending hours sitting on the fire escape looking at the stars while planning out every single detail of my future. Many nights as I gazed into the sky, I would giggle because even I thought my dreams were big and would probably never come to fruition.

I returned to college as an adult student and graduated in 2006. One of the most proudest moments in my life was walking across that stage to accept my diploma and seeing my three children in the audience smiling, clapping and waving.   

The plan was to return after taking a semester off. I desperately needed a break. My body was tired from working a full time job, attending college full time and raising three young children.  My diploma got me a promotion at work and I began looking into making the dream of homeownership a reality. During that same time, I started waking up to burning pain in my torso, nausea, constant headaches, memory issues and severe back pain. I began visiting the doctor looking for answers and he began what is referred to as a "work up". I also began conducting my own research via the internet. As the pain intensified, my mornings become more difficult. I remember the day I explained to my Doctor that I felt like a 35 year old living in the body of a 100 year old. He was scribbling notes and stopped to ask me if I ever heard of Fibromyalgia. I explained to him that I had been conducting research on my own and that the research kept pointing me in that direction. He then stood up, walked over to the examining table, put one hand on my shoulder and told me "Ms. Ramos you have Fibromyalgia". I didn't quite understand fibro at the time and was a bit confused as to why he seemed to be consoling me. It's not a terminal illness, fibromyalgia does not progress and I finally have a name to the cause of my pain. He prescribed me Cymbalta, explained that although used to treat depression it had recently been approved by the FDA for fibromyalgia as well. I felt an immediate sense of relief knowing that I did not have a terminal illness, finally had a name to my pain and was about to walk away with a prescription that would make everything better. Things were about to change!

I started the Cymbalta immediately. Can't wait to start feeling better! Ever watched a Zombie movie and noticed how their lifeless bodies have little or no reaction to anything around them? Yup, that was me on Cymbalta. It did not allow me to laugh, cry or smile. I scheduled an appointment with my doctor and informed him that I would not be taking this medication nor any other. Did he fail to notice my last name?  Us Latina's are naturally emotional. This medication and illness would not strip me of my identity. The next few years consisted of stacking on more symptoms and the pain intensified. Fibromyalgia does not progress, so why am I feeling worse than when I was first diagnosed? I didn't think I had Fibro? In fact, I didn't want to have Fibro, nor did I want to discuss it with anyone because of the stigmas associated with it.

Stigma-Fibromyalgia is not real.

Truth-Fibromyalgia is very real! 

FM-A Real Medical Disorder

The FDA has approved three medications to treat Fibromyalgia and they are not in the business of approving drugs for fake illnesses. 

Cymbalta, Savella and Lyrica are all FDA approved for Fibromyalgia.

Stigma-It's all in your head.

Truth-It is all in our heads, research has shown that Fibromyalgia may in fact be a neurological disorder.

Neurotransmitters in Fibromyalgia

These are just two of many stigmas that caused me to construct a wall of silence. I suffered in pain, alone, and tried to disassociate myself with everything and anything fibro related. I was silently hoping for a diagnosis that came with a cure and no stigmas. Meanwhile, I was feeling worse not better. Many say that Fibromyalgia is not progressive because it does not degenerate the body; however, suffering from constant pain on a daily basis was beginning to take a toll on my mind & body.

I returned to my new PCP(I was now living in Newark, New Jersey and achieved the dream of homeownership despite the pain, fog and denial).  He convinced me that suffering in pain while there were options didn't seem logical and I left his office with a starter pack of Savella. This time I did not feel groggy and actually felt some relief (not an endorsement for Savella). It now made sense that I did have fibromyalgia. Why else would I find relief from a medication solely used for the treatment of fibromyalgia? This is the moment I started my journey through the acceptance stage and stumbled upon the road to finding relief.

Thank you to Fibromyalgia english/afrikaans for allowing me to use their two images of fibrofacts.  To see all 10, find and like them on Facebook.

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Baby it's Cold outside

I enjoy snow sledding, snow mobiling, the aroma of burning wood and fresh pine in NJ during the winter and traveling through NYC penn station and seeing it transformed into a Winter Wonderland.

What I don't enjoy is the way my body reacts to cold. My fibromyalgia usually runs rabid whenever there is a drastic change in temperature and ALWAYS during times of Rain.

Rain, Rain go Away, I have fibro and the pain is not welcomed to stay.

It may be cold outside, but there are ways to keep our bodies warm.

Ugg boots are the best shoe ever made! They can be a bit pricey and may not go with every outfit but they keep my feet warm which in turn makes me comfortable. I can always be more fashionable in the warmer months when I feel better and can choose from a wide variety of sandals. Life is about making compromises anyway.

I have traded in Soda for Tea. This is a win-win situation. We have all heard the disturbing side effects of soda and the wonderful benefits of drinking tea. The tea keeps me warm and helps with other issues as well. Peppermint Tea aides with the symptoms of IBS and Chamomile aides with winding down after a long day.

I could not survive a winter without my heating blanket. I remember walking through Walmart, noticing heating blankets on sale and thinking that would be a nice gift for my mom when she is elderly and needs to remain warm. My mom has yet to receive one for Christmas; however, it is the best $19.99 ever spent. It not only helps me stay warm during the night, it also feels nice to get in a warm bed after coming in from the cold (I use it as the top sheet, not as a cover).  I also learned something new-heating blankets are not made only for the elderly.

Warm baths are my new best friend. That is until the water heater decides it needs a break. I've never really believed that taking breaks from relationships were beneficial to either party but my relationship is with the warm bath and not the water heater. Guess this proves that relationships are really only meant for two people. The warm bath in the AM helps get my body warm and ready to tackle the winter cold. The warm bath in the PM helps get my body warm after being out in the cold and is a relaxing way to wind down after fighting fibromyalgia all day.

This is how I tackle the Cold & Rain in an attempt to manage symptoms. When all else fails, I remind myself that this too shall pass and it ALWAYS does!

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How can you do it All?

This is usually the question I am asked after I inform someone that I have Fibromyalgia. The answer is that I NO longer do it all. I gave up my volunteer work, I gave up cooking everyday, I gave up spending time with friends, I gave up cleaning my house everyday, I gave up being obsessive, compulsive & controlling (this maybe a good thing to have given up) and I gave up my memory which doesn't allow me to remember all the other things that I gave up (not by choice-smile). 

All of those things were traded in order to conserve energy. Energy that can be used with family or educating myself on holistic approaches that aide in managing symptoms. When I am not successful, I just fake feeling well. Why fake it? Because although for the most part peoples intentions are genuine and come from a place of concern; discussions about me not feeling well often lead to pity parties. I understand & respect the need to vent, as there are many times that I do this myself (hence why I blog). However, a pity party is very different and is of no use to anyone, since it usually consists on dwelling on the issue which often leads to stress and depression.  We all know that stress and depression are the highways leading to only one destination-Fibromylagia Flare.  I do not do it all and my life has changed FOREVER but I am only looking back in order to see how far I have traveled.

Keep in mind that Skills are taught, Attitude is influenced but YOU bring the Resiliency! 

 

Every time your back is against the ropes you always find a way to free yourself and fight back. 

YOU ARE FIBROSTRONG!

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Wonder Woman Meets Fibro Woman

I am not changing my life! I enjoy taking care of everything & everyone. Fibromyalgia will not hold me back from continuing life as I know it. That is the mindset that prevented me from managing pain and continuously crashing into that wall we refer to as a Fibromyalgia Flare.  

I HAD to make changes in my life, although I didn't WANT to. I was taking care of everything and everyone while failing to take care of myself. The most important changes were learning to Say NO and Pacing Myself. That combination made a huge difference in managing pain.

I had to learn that saying NO to others meant saying Yes to me. I am now able to create healthy boundaries in relationships by saying No. I make sure that I do not cause myself a flare by overextending myself or putting too much on my plate. There are still times when I can't avoid putting too much on my plate. During those times, I remind myself that it is acceptable to leave  leftovers for tomorrow, it is acceptable to have a messy house (work in progress), it is acceptable to start the next day with a full to do list, it is acceptable to ask for help. How else would I find the energy to conquer mountains that I cannot climb? 

I know that there are many things I will never be able to control, so I manage what I have within my reach and that always begins with not overextending myself. I am not limited by Fibromyalgia, the only limits that I have are the ones that I have set for myself, which are NONE. I just had to learn to live life differently in order to unveil the life I once knew.

Fibro Woman does not need a cape, lasso or indestructible bracelets, her super powers are within. She manages 1-20 symptoms on a daily basis including Chronic Pain and Fatigue, She is an advocate for herself and 10 million others like her, She is Physically, Mentally and Emotionally drained. At first glance you would not know any of this because she allows her BEAUTIFUL Smile & Strength to outshine all the Fibromyalgia Villains. She is Fibro Fierce!

Sharing is Caring <3

Do we learn to manage symptoms or do we adapt to a body with pain?

The question I ask myself every single time I am in the midst of a flare. For years after my diagnosis, I only experienced bad days. I could not remember what good days were or felt like. As I researched options available, began journaling to identify triggers and found support within my FM community-the good days really did begin outweighing the bad days. Today, I still experience flares. In fact I have been in the midst of one for a few weeks now. These are the times when I question whether I have really found a way to manage my Fibromyalgia or have I just adapted to the new me?

Can we fake it until we become it?

The problem with this Science (guess my PCP is right in saying that the science has yet to be discovered) and Fibromyalgia is that my body does not always agree with what my brain has to offer. During those times, I allow body & mind to agree to disagree. I demand that my mind take a backseat while my body has time to heal. 

Therefore, the answer to my question is YES to both. By managing symptoms I have been able to have more pain free days. By adapting to my new body, I have accepted that with it comes pain, fatigue and fog- the battle continues.  

This battle is definitely worth fighting, since in the end I reap the benefits.

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Preventing Suicidal Ideation in the FM Community

Within the past month, it has become apparent to me that one of the most important topics we need to discuss is Suicidal Ideation in the Fibromyalgia Community. 

I learned early on that I would not die from the syndrome itself, but that the diagnosis compacted by symptoms such as: depression, insomnia, sleep apnea and autoimmune disorders such as hypothyroidism &  systematic lupus (which present with symptoms similar to mood disorders) and are also commonly associated with Fibromyalgia put me at a higher risk of suicidal ideation. All three medications approved by the FDA specifically for FM patients come with a prominent warning about a possible increase in suicide thoughts and behavior as well. 

Fibromyalgia patients live with physical pain, extreme exhaustion, emotional pain from having their lives literally changed overnight, some lose their jobs and/or marriages due to the illness and many are doubted or neglected by friends, family, coworkers and the medical community. The frequency of pain intensifies and they are not assured that help is within reach. They wind up seeing no other way out or relief in the near future. They start to believe their situation is hopeless due to the lack of support and ignorance from those who they have trusted and depended on.

What can I do to help my Loved one?

You can help by reminding them that suicide is a permanent solution to a temporary issue. You can help by providing them with resources to help manage pain. You can help by linking them to support groups. You can help by working with them on creating a safety plan: http://www.suicidepreventionlifeline.org/Learn/Safety

But most important of all you can help by connecting them to Lifeline 1-800-273-TALK (8255).

What can I do to help myself? 

No matter what you are going through, Lifeline is available if you're struggling with difficult emotions. You do not need to be thinking about suicide to call. The call is free and confidential, so don't hesitate to contact the Lifeline at 1-800-273-TALK (8255). Your life matters!

PreVENTion begins with allowing people to VENT! 

National Suicide Prevention Hotline

I promise you that I am willing to fight this battle for ALL of us, will always listen and understand anything you have to say, no matter what!  Lifeline is available to help 24 hours a day.  I NEED you to believe that the C.U.R.E (Compassion, Understanding, Relief, & Energy) is within our Reach! 

Resources/References: 

http://www.suicidepreventionlifeline.org/

http://www.cfidsselfhelp.org/library/killing-me-softly-fmcfs-suicide

http://www.fmcpaware.org/fibromyalgia/fm-fact-sheet.html

http://www.ncbi.nlm.nih.gov/pubmed/16268383

http://www.health.com/health/m/gallery/0,,20400711_8,00.html

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Is it time to fire your Doctor?

 As I sat in the Rheumatologist office, I hoped that today would be the day he had answers. I filled out the form as usual, circling the parts of my body that hurt,any recent changes,emergency room visits, prescription medicines and my growing list of symptoms. 

I went into his office, he reviewed my chart, asked me who had diagnosed me with hypothyroidism, scribbled some notes and then handed me a tri-fold pamphlet detailing Fibromyalgia-sending me on my way.  As I exited his office, tears were streaming down my face. I spent the next thirty minutes in the parking lot crying, angry with the doctor, with Fibromyalgia and with the world. Out of all the medical issues in the world, why did I get diagnosed with the one that is not yet understood by the medical community? What is this stupid pamphlet going to do for me when I'm in pain? Am I supposed to read the pain away? 

I've heard way too many stories similar to mine. Fibromyalgia patients everywhere leaving their Doctor's office in tears.

I now understand that our MD's are only a piece of the puzzle. I no longer expect to receive answers while I am there, unless it is a new symptom (9 out of 10 times that symptom somehow ties in to Fibromyalgia anyway).  However, they still have an obligation to treat us with Respect & Compassion. In fact, they took an oath to do just that. 

I have a wonderful Doctor-Patient relationship with my Primary Care Physician. He listens, we discuss treatment options/plans, I never feel rushed, he is empathetic and assures me that he wants to find answers just as much as I do. 

"Doctors are scientists and when we can't figure out the science, we become just as frustrated as our patients".

Your MD should be open to a patient centered care approach. S/he must be empathetic. S/he must understand Fibromyalgia and the symptoms, conditions commonly associated with this syndrome. 

List created by the National Fibromyalgia Association

If you are not content with your Doctor, you can start a Doctor search by visiting the National Fibromyalgia & Chronic Pain Association Heath Care Directory: http://www.fmcpaware.org/healthcare-provider-directory.html

Word of Mouth or Referrals are also a good place to start. Ask others in support groups or who live near you. 

Call the office and ask if the Doctor has experience in seeing patients with Fibromyalgia. 

You are allowed to change Doctors, even with managed health care. We deal with so many symptoms and conditions that our Doctor's must be Supportive, Understanding and Knowledgeable about the options available to manage pain.

Allowing people with Fibromyalgia to suffer is Inhumane & Unacceptable!

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Fibro Fog-What? Huh?

It was the day before my wedding and we had just arrived in Orlando, Florida. We packed the rental with our four young adult children, younger sister, nephew, niece and the two of us. Before we could check in at the hotel, we needed to make one pitstop to pick up the convertible we would use the next day.  Seemed like an easy and quick task. Although, Fibro Fog had not received an invitation to my wedding, I knew from experience that Fibro Fog loves to crash parties. Therefore, I had prepared a binder in advance with all the information needed including print outs of directions (never know when you might loose wifi signal). 

Jay (my hubby :-) made one wrong turn and we were lost. Everyone in the van quickly became Compasses "we should be going south not north", "you should have turned here", "you need to go around", "if you just turn down this way".  All the while Jay is repeatedly asking me where is this place? "You have the address & you don't know"? I kept trying to make sense of the directions on my phone and the print outs in my binder. Everyone continued giving their opinion ALL at the same time. I became frustrated as it was apparent that I would not be able to figure it out. The only thing that came to mind was "sensory overload". 

At that moment I yelled "I guess no one here reads my Facebook Posts because I wrote about Fibro-Fog & Sensory Overload". All of a sudden I had a van full of very quiet & well behaved vacationers. I am blessed to have a supportive family who understands Fibromyalgia, even though at times I have to sprinkle magic fairy dust (sounds nicer than saying I yelled) to remind them about the new me. However, I can't go to work or through life yelling at people for not reading my FB or blog posts. 

What is Fibro-Fog? 

Fibro Fog is a symptom of Fibromyalgia that affects memory and cognitive skills.  Fibro-Fog is temporary and on average lasts only a few days.  Fibro Fog can be exacerbated when dealing with sensory overload, being rushed, and/or feeling anxious and almost always during a Fibromyalgia Flare.  The difficulties you can experience are being forgetful, confused, difficulty concentrating and inability to speak, inability to retain or learn new information and difficulty transposing letters and numbers.  Fibro fog can be frustrating and embarrassing as it can make its appearance without any warning sign. 

My fibromyalgia family defines Fibro fog as: 

"Fibro fog is like um, um, um, darn I forgot"~Lily C. 

"Fibro fog is like having 3 calendars; pocket, wall and cellphone with an alarm to remind me of my appointments and still forgetting something"~Sarah O. 

"Fibro fog is like living just above the clouds and trying to get back down to the ground to accomplish one thing"~Kathy O. 

"Fibro fog is like when normal people have a word on the tip of their tongue but can't get it out; except for us it's every other word while your brain hurts and feels hazy"~Milly V.

What can I do?

The day before my wedding was a sign to me that I would have to make adjustments to my plans since by the end of that evening it was becoming more difficult for me to get simple words to go from my brain to my mouth. I decided the next morning to stay in my hotel room, spend quality time with my daughter, relax and clear my mind. Thankfully, it helped and I was able to remember two simple words-I DO!

Here are a few options that may help:

-You should always try to remove yourself from the situation before it spirals out of control

-Get some rest & relaxation

-Avoid stressful situations

-Exercise (mighty endorphines to the rescue)

-Play memory games such as scrabble, word with friends, crossword puzzles, etc.

-Make sure to include antioxidants to your diet. Stress causes free radicals which causes inflammation and damages brain cells. We want these free radicals to be removed from our body quickly.

-Gingko Biloba has been used for thousands of years to improve memory and sharpen thinking. Hopefully,  you will
remember to take it.

A few years ago, my sister informed me that she was taking Gingko Biloba.  I immediately asked "Does it work"? Her response was that she kept forgetting to take it.  So I will leave you with this keep a to do list, set reminders on phone and write notes to aid you when fibro-fog decides to make it's appearance. When all else fails, get rest and remind yourself that this too shall pass-It ALWAYS does!

 Sharing is Caring!

Still Blooming Despite Fibromyalgia by Caraline Shedd

Caraline Shedd

I have always been labeled a Hypochondriac. A bump on the head or a scrape on the knee just always seemed to hurt more than it should. I would complain and complain because the pain just wouldn't go away and I would beg to go to the Walk-In assuming the worst. My mom usually didn't give in to my crazy thoughts and I learned to just "walk it off." Knowing what I know now, I probably would have "walked it off" right on over to a pediatric rheumatologist's office. 

I was 16 years old and a sophomore in high school when I started to have symptoms of chronic pain. I was fatigued and had constant muscle pain no matter how much or how little physical activity I did that day. Throughout high school, I was very active as a member of the Junior Varsity and Varsity Volleyball team, a leader in Drama Club, and a part of many other extra-curricular activities. I loved being involved in school activities and had no intention on slowing down.

I dealt with the pain for the next three years as best as I could and graduated high school on June 25th, 2011. My plan for the future involved attending my local community college to be able to apply for the Disney College Program. I loved performing and entertaining people and it was my dream to become a Character performer for Disney. After completing a year and a half of college and being denied twice by the college program, it was time to switch up my game plan. I changed majors from Liberal Arts to Communications and Media Arts and this brought on a lot of stress. Throughout college as my stress increased from seemingly never-ending life problems, my pain only got worse.  This is when I finally decided to see a specialist and after visiting my primary care doctor, I was recommended to a Rheumatologist. At my first appointment, the doctor did the routine look-over and asked me everything about my pain. She then scheduled a Nerve Conduction test/ Electromyogram (EMG) which measures the electrical activity of muscles at rest and during contraction. Basically this was to test for Amyotrophic Lateral Sclerosis (ALS) and to look for any muscular deterioration. This was one of the most painful experiences of my life. Not only was I already in pain as per usual but then to have a needle basically electrocuting me in the most sensitive parts of my body was just pure torture. I also was instructed to have an MRI done to check for blood clots in my legs. The next time I visited my Rheumatologist she informed me that both tests came back negative. She said that she had exhausted all of her options and that it could only be Fibromyalgia. I had done enough googling ahead of time after the testing to realize that I definitely did indeed have Fibromyalgia. At that point I had told her that I wanted to treat this as holistically as possible. She ignored my request and asked me if I had trouble sleeping. I replied "Of course I have trouble sleeping, I'm in constant pain!" This prompted her to write a prescription for and anti-depressant that she said would help me sleep better. I had asked her about the option of physical therapy...another muffled scoff.  After pushing the prescription back across the table, I left her office and never returned. I went home and cried frustrated tears wondering how a doctor could be so ignorant and dismissive. I was in the prime of my life and I couldn't find the strength to get out of bed to get to school let alone try to pay attention and finish assignments through the brain fog. I went untreated for the next three years and in a way became my own doctor. I have tried everything from yoga to herbal supplements and hadn't found a sufficient way of treatment. 

I graduated from SUNY Broome Community College with a degree in Communications and Media Arts with the support of my friends, family, teachers, and classmates. In 2013 as my pain was only increasing, I sustained an injury to my foot at work. I tore several ligaments in the top of my foot and was put in a CAM Walker boot for six months. This was a very difficult time for me and my Fibro because now i was lugging a five pound boot around with me everywhere. I was constantly exhausted and in unbearable pain. I ended up having to have surgery to remove a bunion and to do exploratory surgery on my work-related injury. The doctor found a Morton's Neuroma in my foot that had to be removed and fixed my bunion. This meant up to a years worth of recovery for my poor little foot. All throughout the recovery process, I was attending SUNY Oneonta and was struggling the entire semester. My dorm room was on the second floor so the service elevator was was my way up. I dreaded getting out of bed in the morning only to struggle getting out of bed, hopping to the shower, getting dressed, and having to lift the heavy elevator doors every time I wanted to leave my dorm. I eventually rented a knee scooter which made it easier to be more mobile but the extra amount of effort it took to get from Point A to Point B was too much. As much as I tried to attend class and keep up with the classwork, it didn't seem to make a difference. I was ultimately Academically Dismissed from school for the next year. I wrote a letter of appeal to the Academic Committee explaining the difficulties I had experienced during that semester and again was denied re-admittance. When I called the committee to receive a simple explanation, the women told be that my medical excuse wasn't enough and that the only reason they have the committee is for students going through chemotherapy or other medical treatments and for students who had lost a parent during the semester. It literally blew my mind that even with medical documentation and a very well written appeal letter that it all wasn't enough. This was probably one of the worst times I had experienced during my journey with Fibromyalgia. I was extremely depressed and had constant anxiety because of the situation I was in. It took a leap of faith and the constant support of my friends, family, and my boyfriend at the time. It's been a bumpy road since then but after attending the Leaders Against Pain conference, I've found a place to put all of my passion, anger, knowledge, and strength with a smile. I want to be a lighthouse for all the ones in their own Fibro Boats. I am still learning how to navigate through the crazy waves of treaments so it will be a learning process and experience for everyone. I want young people who have been diagnosed with Fibromyalgia and Chronic Pain to know that you are so much more than that diagnosis. 

There is life to live among all the pain and it is SO WORTH LIVING!

To read more: Follow Caraline's Blog at http://thelivingtreefibroandchronicpain.blogspot.com/

Up Next!

I love sharing my personal journey with fibromyalgia and hope that in the process I will bring awareness and remove the stigmas associated with this syndrome.

However, I am not alone in this journey and will periodically be sharing personal stories written by Family Members (Someone I Love has Fibro), Men with Fibro (Men have Fibro too) and Young People with Fibro (Still blooming with Fibro).

Stay tuned for tomorrow's post:

Still blooming with Fibro by Caraline Shedd (diagnosed at 16 years young).

Someone I Love has Fibro by Joshua R. Ramirez!

Hi,

My name is Joshua and I am the proud son of Carmen Ramirez.

Carmen & Joshua Ramirez

At first, I had no idea what to write other than I want people to know how amazing my mom is. My mom deals with fibromyalgia, for those who might not know what that is:

         “Fibromyalgia is a syndrome in which a person has long-term, body-wide pain and tenderness in the joints, muscles, tendons, and other soft tissues. Fibromyalgia has also been linked to fatigue, sleep problems, headaches, depression, and anxiety”.

I say my mom "deals with" not “suffers from” because positive language is a key thing I had to learn living with someone who has this daily battle called fibro in his or her life.

It's difficult living with the knowledge that my mom,

The strongest woman I know,

has moments where she feels too physically weak to get out of bed.

It’s tough when my mom will tell me something or have a conversation with me and forget it seconds later, sometimes resulting in me hearing the same thing two or more times and her wondering how I knew what she was going to say.

It’s a hard learned fact that Fibro Fog is real and there are times when I have to finish my mom’s sentences because we both know what she wants to say but she just can articulate the word at that moment.

It's hard to remind myself that while I might feel fine my mom is at times dealing with  excruciating pain and fatigue….. but she makes the effort

because My mom is SuperMom,

because My mom loves unconditionally

                and because My Mom is the strongest person I know.

People with Fibromyalgia in general may feel weak in the physical but in actuality they are people of Herculean strength finding somehow the ability to still go about their day, do what they need to get done, still be what other people need them to be.

(I mean Superman can’t even get off the floor when exposed to Kryptonite but to a person with Fibro, a rainy day might mean that kryptonite is around their neck all day and they still find the strength to be amazing.)

My mom runs a home of 8 and still finds

TIME for everyone,

PATIENCE to hear us out and

ENERGY to get out of bed on days she should really be resting, all because she wants to make sure we eat breakfast before we go to school even though all three of the above might be in short supply that day.

It's been tough over the years slowly seeing symptoms I didn't realize before or I was in denial about.

I remember walking in one morning to my moms room to give her a goodbye kiss and she was knocked out, normally a light sleeper I was surprised she didn't get up I realized it was pouring out!

For people with Fibro bad weather can be a trigger for flare-ups,

My mom probably had just fallen asleep when I was getting up and was probably in a lot of pain,

I looked and saw

her hands looked puffy, tight skinned and shiny

It made me feel powerless because

I would do anything for my mom but I can't fight this for her,

I can't

 take some of the symptoms from her
I can’t
lend her my energy
I can’t
provide her the rest she so well deserves and it’s infuriating for me so I can only imagine how frustrating it is for her, a woman so self-sufficient to feel bed ridden some days.

I’ve learned something simple like doing the dishes or making dinner for her means her hands won’t hurt as much that night,making her breakfast might give her the energy and smile she needs to get up that day,

I’ve learned that doing my best to not get her too emotionally distraught helps too as emotionally draining days usually trigger a flare-up and require a while to recover from
I’ve learned that my mom should stay away from certain foods and ingredients so I try to be mindful and not order Chinese food or things that might tempt her to take a bite and then she’s down for the count hours later.

To me my mom is still the most beautiful woman in the world and hasn’t changed in appearance since I was a kid but I also know that there is a part of me that sees when her cheeks swell, her forehead blushes from fever, her skin gets blotchy when there are patches of heat where her muscles spasm and writhe in pain and I see the blue of veins popping as her skin draws tight and it worries me.

I think living with someone who has Fibro has taught me to have all the same qualities she pushes herself to provide us like Time, Patience and Energy.

It’s taught me to be mindful of my choices and how it might affect my mom; “Can she do a walk in the park with me today?”

Not if I want her to come to some other event with me later, her energy is limited and precious and I am honored she chooses to use it on me.

It’s taught me to appreciate the time I do have with her, to continue to work on myself.

I’ve learned a lot and still have a lot to learn, I can never truly 100% understand how my mom feels but anything I can do for her and for other’s like her I will.

I had a friend in College who I later found out had lupus, because of my mom’s situation I came to understand how my friend felt sometimes when she said she was tired or needed help carrying a book.

I do pray everyday for my mom’s healing but in the meantime we are here in the midst of the battle using everything at our disposal to get through one day at a time.

I still am not sure what I want to convey to families out there who either have been dealing with Fibro or are maybe just getting this diagnosis for the first time.

There is no handbook.

There are no quick fixes.

It’s an arduous process of learning and loving.

Learn what are triggers and what can you do to minimize those?

I know for sure that I love my mom and I am proud of her and every individual out there who has to deal with the same things my mom and my family does.

I thank Milly for allowing me to write here. My heart goes out to you and whoever is reading this.

I’ll stop here as I think I’ve taken enough of your time rambling, just please remember to learn, love and apply as necessary.