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Gaga for Lady

Written in G ♯ minor and at 120 beats per minute, the synthetic sound that rocks with pop beats became instantly recognizable. There she appears in a one strap black latex jumpsuit, glistening as she emerges from the water wearing a mask that looks as if it has been made from a dlady-gaga-poker-face-tablet.jpg.b2bd67a4fd3f952f0f8dab0968f8a80bisco ball. There she is in all her glory – beautiful, eccentric, bold. Since that first image of her, I have been a fan of this extraordinary woman.

Lady Gaga, who has since been named, Mother Monster by her followers, has never apologized for being outlandish. She is known for being provocative and unconventional in her ways of entertaining, hello remember the Meat Dress? She is also known for being completely open about her life and past and experiences.

But, Stefani Joanne Angelina Germanotta has been in the news as of late not for her music, but for revealing she suffers from chronic pain and fibromyalgia.

This week alone this mega icon has canceled her European lag of her tour and posted her pain. Not many people are open about their private lives and for any person who suffers from anything, being open to the public critique and ridicule makes speaking out harder than just being mute, putting on a smile, and saying “Everything is fine.”

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So why is her canceling her tour, coming out as suffering from Fibromyalgia, and promoting a documentary about her life behind the lights of stardom entitled “Lady Gaga: Five Foot Two,” news?

Lady Gaga’s public admittance is bringing this disorder that is estimated to affect more than 100 million people* to the forefront. I believe her coming out and being truthful about the chronic pain she lives with is starting the conversation that hasn’t always happened. If a star as huge as Lady Gaga has chronic pain and fibromyalgia, then it solidifies that it is real because she is perfect, has a perfect life, and can’t possibly be faking it. Right? She’s never lied to her fans or the public about any aspect of her life, trauma, and beliefs so why would she make this up?

I use the word suffer not only because trauma and chronic pain have changed my life, but because they are keeping me from living a normal life. – Lady Gaga

Her documentary is being looked at by some as potentially a negative based on how she portrays herself and chronic pain. Some people are saying they’re scared of how this will portray chronic pain because she, as a celebrity, has access to treatments and medication that those of who aren’t millionaires don’t have. I am sure she is with the best doctors and using the best “treatments” available because she does have the money, but I think speaking out about it is more of a win than whatever she shows us in her documentary. The words “chronic pain,” and “fibromyalgia” are now on the radar of millions of people thanks to her. I’m sure some of her fans who have never heard of fibromyalgia looked it up, are trying to understand it, and maybe even finding people they never knew who suffered are suffering all simply because she put it out in the universe.

I might not be saying it from a microphone to millions of people at once but I have a voice. I do not shy away from talking about what I have, what I “suffer” with. And, like Gaga says in her statement posted today:

 I use the word “suffer” not for pity, or attention, and have been disappointed to see people online suggest that I’m being dramatic, making this up, or playing the victim to get out of touring. If you knew me, you would know this couldn’t be further from the truth. I’m a fighter.   Screenshot (6)

To me Lady Gaga brings hope for awareness, understanding, and acceptance. She shows that a celebrity, a world-wide icon at the end of the day, struggles with the same issues you and I do. She is more than the woman we see in her extravagant videos or on stage doing amazing choreography in heels that most of us couldn’t even stand in for a second. She. Is. Human.

* “Living with pain” U.S. Pain Foundation. Sideless Box Design Co. 18 Sept. 2017.

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Battery Life: Short

Battery-life-636x310It’s the day after the Total Solar Eclipse 2017. People around the globe celebrated and shared their exhilaration with photos that showed their locations, groups of people, parties (with an array of deliciously looking food), and their funky, plastic, futuristic fake “3D” glasses that wouldn’t burn their retinas as they stared in awe. Literally, the world came together to see the Moon cross the path of the Sun for the first Total Solar Eclipse of the century (weather permitting).

Me however, I laid on the couch, exhausted beyond feeling like I was functioning. I got about two hours of sleep, was up early, and was watching a spunky, energetic two-year old (He was napping by the time of the eclipse).

The Moon affects the tides, the Sun’s rays affect energy. Was I exhausted because of the rain we had been having? Lack of sleep? Or was it because of the celestial pull of the Moon and what astronomically was about occur?

All good possibilities right? I believe it was a combination of all those plus the invisible illness that is Fibromyalgia. Chronic fatigue is something most of us with fibromyalgia suffer from. Some days, as my Grandma would say, I’m “full of vim-vigor-and vitality.” Others getting out of bed, even opening my eyes, is a chore.

Do I say this to complain? No. Do I say this for sympathy? No. I say it because it’s my experience. Leading up this event of the century among the stars, my body was giving me signs that 1) it wasn’t happy 2) the weather was affecting it and 3) it couldn’t decide if it wanted to cooperate or cause pain.

But, even though I had the pain, I still did what I wanted. Which for most isn’t something you have to think about with your body. I worked out in the evening. I went out with friends and wore an outfit that said “Made In The 90s,” (yes I know I was born in ’85 but my life was shaped during the 90s), and had a night to remember with people I adore. I did what used to be normal activities without having to think “Will my body betray me?”

Yesterday with the eclipse I felt betrayed. My body didn’t want to function. It wanted to rest in sleep mode to reboot.

So, the night before I was at 100% battery life. The next day, “Low-Power Mode.” Such is a life with fibromyalgia.

…But to lose all my senses

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1…2…3…4…

Inhale. Exhale. Inhale. Exhale. Inhale.

Slowly your mind begins to drift into a state of hyper-awareness; your senses start to take over. You feel the weight of the water. It’s heavy, prominent. It laps against your body, presses on every inch of your skin. It sounds as if you’re in a cave and every noise resonates forever. Visually it’s pitch black because you have your eyes shut. Without the use of your eyes, you “see” through your other senses. The smell is potent but not fishy or sweet like after a rain if you were out on the ocean. Should the water get into your mouth, it burns, is sharp, and is astringent. With all the senses going into hyper-awareness, it seems that you wouldn’t be able to relax.

Quite the contrary.

Dr. John Lilly in 1950, a neuro-scientist who was researching brain waves and altered states of consciousness, invented floating is meant to deprive you of all your senses. Since it is a sensory deprivation chamber, or a IMG_0769Float Pod, the purpose is to let your body relax and reset. It is filled with 900 pounds of MgSO 4, Magnesium Sulfate, also known as Epsom Salt, dissolved in 250 gallons of water. Due to the high volume of MgSO 4, your body is completely buoyant, suspended as if in outer space with zero gravity.

Along with allowing your body to relax and reset, it is said to be a good tool for chronic pain. This is what drew me to trying this.

“Internal studies have shown chronic pain will drop 40-50% in the first float down to 80-90% by the third float.” *

The day I went into float at Full Spectrum Float in Mankato, MN, I was having pain in my right foot that had been acting up for the week prior. I was told floating would help it.

In the float pod, at first it was weird. You’re literally left alone to all your senses and thoughts. It was hard to not think about things that were on my mind.

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Before Float.
But, before I went inside, I was told to count my breaths to help my brain slow down it’s theta-waves. By slowing down my brain waves, my body is allowed to completely shut down, reset, alter into a state of full relaxation. Essentially to get full R&R. you have to slow down your “turn off your brain”.

Inside the float pod it was like the world didn’t exist and it was fascinating. It is said floating almost recreates the experience in the womb: lightless and sensory overload. And, it was sensory overload at first. The water was loud when I was moving to get into one of the many positions mentioned to try on a pre-float video (link at bottom): I Surrender, Mummy, the common Plank (arms just down by your sides), or Mild Dance, to name a few. Yes, I said the water was loud. In the Pod, with no other noise, the lapping of the water reverberates and being in such a small, closed in chamber, there’s no where for the sound waves to go. It’s not so loud it is overwhelming, it’s just right there – 360° around you.

So, there I am floating. My brain is shut off. I can actually feel my muscles relax in ways I have never experienced. It was an amazing sensation. My body fell limp. I was a noodle. As I floated in the water, slowly I began to fall asleep. It was more relaxing than sleeping in bed. My whole body was shut off – lights out. I could feel the pain in my foot but it didn’t hurt, it ached. But, it was as if someone was removing the pain aura from my foot. When I woke up and my one hour session was over, first it felt longer than an hour session, second I felt calm, laid-back, completely at peace, and the pain in my foot had subsided probably 30%.

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After Float.
The experience of using your senses to allow your body to relax is a good therapy because life is stressful, busy. Most people hold stress in their shoulders or stomach. We clench up, hunch, strain ourselves, and over work ourselves. Floating allows all the “damage” we do to be undone. It’s a reset. You have to be willing to fully let yourself go and let your mind go into the unconscious that happens in the zero gravity like environment. If you can and do, you’ll be refreshed, reenergized, and maybe have less pain

Think you can free yourself to float Continue reading “…But to lose all my senses”

Advocate Me

malAdvocacy: helping and supporting others.

Everyday we advocate for ourselves and those we know, love, respect, and/or admire. Social media has become the forefront for advocacy. GoFundMe pages, Petitions, and shared posts about anything and everything viral go around on the internet constantly. We say, “Sure I can support you because you’re going through X, Y, Z and I’m not but I’m here for you.” We like, love, show we’re surprised or angered by posts.

We do things for others a lot of times over our own needs. We tend to put others ahead of ourselves. But, when it comes to ourselves and our health and happiness and/or needs, we tend to not speak up about it, say we are “fine,” or just simply smile and put on a face.

But why is it so hard to say simple say “no,” or back out of plans when it comes to our own wellness and our own advocacy?

Personally, I don’t like to disappoint. I don’t like to say no because part of me thinks I am going to miss out on something amazing, or I will be leaving said person/friend out to dry. I don’t like to say “No,” because I don’t want someone to think that if I say no I’m not interested and maybe therefore they won’t invite me to do things. Is this rational? Perhaps, perhaps not. Is this typical? Maybe, maybe not. But, this is how it is.

When all this started for myself and I know for many others, we took charge of what it was we were needing because something was wrong. We told the doctors, nurses, family, and friends that X is happening in hopes they got it, understood, tried to understand, and/or would help. We spoke up for ourselves. We advocated for us.

Me saying, “Something isn’t right. Here is what is going on,” was important simply because I needed help. My body was acting up in ways I had never experienced. It was telling me I hurt, couldn’t walk, couldn’t do this or that and by saying so, I was bringing awareness to what was happening.

Sadly, advocating for ourselves after a time or if there isn’t a lot of support can be daunting. People have been told speaking up about what is wrong with them is for attention. A lot of times we aren’t believed. A lot of times there isn’t the support that is needed to just get through it. How do you get through something that won’t ever go away when you have no one to be there for you to lean on?

I am lucky in that I do have supportive friends and family.

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They may not relate to my experience as they don’t deal with it themselves but, because I openly talk about what I am going through, they can understand a little more.

Advocating for ourselves isn’t because we want the attention. Do people think that those of us who suffer, be it from anything, really want the attention that comes with it? The stares because you’re walking with a cane or using a wheelchair even though nothing “physically visible” is wrong with you? Do others understand how hard it is to say in your mind, “I can’t do that anymore; I can’t do that like I used to. What if I do it? Will I hurt more? Will I flare?” The answer is no.

Personally experiencing the lash of someone telling me that me using a handicap spot at the mall once was terrible and made me a terrible person because there was obviously nothing wrong with me really changed my view of myself and this illness. No you can’t visibly see what is wrong. But, having experienced such a negative experience to what is already a negative physical response, I asked in my support group what to do? What can I say? I stared dumb founded when a woman said those words to me. Someone spoke up and said they put a piece of paper in their dash that states they have an Invisible Illness and that if there are questions to just ask. This is advocacy for ourselves and for those with invisible illnesses.

Melissa Swanson, the Minnesota Advocate for US Pain and Co-Leader  of Fibromyalgia and Associated Conditions Support Group, said:

“By speaking up [for yourself] you’re already an advocate.”

Those of us who were at the support group this last session were thanked for showing up, for supporting each other by showing up, and by checking in with each other. Illness, regardless of what it is, can cause people who suffer to withdrawal, be depressed, feel lonely and misunderstood. By checking in and even just making the commitment to ourselves and the others at the group to go showed that WE ARE ADVOCATES. We do care. It may be hard to get the motivation to go, but because we do or reach out to each other, we are a form of advocacy and support which is so important.

We all lean on people in our lives: parents, siblings, friends, and co-workers. Whoever we have that will listen, support us, and be there for us.

For those of us who do suffer from illnesses, support is sometimes the difference between staying in bed and going out into the world. Having someone advocate for you by showing up or reaching out is what everyone needs. Advocating for yourself gives us one way to control what we can’t. What and whom do you advocate for?

 

Hide & Seek

With a cold you have a runny nose or can almost ascertain a cancer patient due to hair loss from chemotherapy. These characteristics make sick visible.

But, with Fibromyalgia, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, migraines, and many other “invisible illnesses,” visibility doesn‘t even show up under a microscope.

It started as nothing more than calf cramps one evening in April 2014. I went to bed thinking, “Oh I just worked out too hard yesterday.” I was on an every other day work out regiment at this time. The cramps didn’t hurt. It was just calf cramps.

The next morning, I woke up, feeling great. I put my feet down on the bed and stood up, my legs crumbled under me and within a blink of an eye I was on the floor, in pain (a 4-5) and confused. I tried to get up again. I couldn’t do it. So, thinking, ‘Well, hmm that’s weird,” I called for my Mom and told her something was wrong with my legs. I explained it felt like I had pulled every single muscle in my legs but the pain wasn’t that terrible. So, to the doctor I went. Here started two and a half years of testing, poking and prodding, and weird medicine concoctions. One ER doctor in my first days of this told me to drink tonic water with quinine, to help with the leg cramps, which after only two days of drinking I couldn’t continue. It was so horrid tasting.

I didn’t mind sitting in the tube for MRIs, or the many trips to Mayo Clinic in Rochester, or all the needles, except for the needle used for my electromyogram (EMG)! Every single test run, except my ANA which was spiked but not for concern, came back normal. Normal. Nothing was wrong.

Over a year and a half in, the moment happened that made me mad for the first time about what was going on with me. My doctor told me she didn’t believe me, that, “It was all in my head.” Simply because every test came back normal.

Nothing was visibly wrong. So, therefore there was nothing wrong with me. My legs just weren’t working because I didn’t want them to work. I was somehow subconsciously making them not work.

I knew something was wrong. Those in my life could see that something was wrong with my legs. But, medically nothing was wrong.

That’s when on one of my many trips to Mayo Clinic was to go to the Fibromyalgia Pain Clinic. There, they checked for the trigger points to determine if what was wrong with me was Fibromyalgia. There they said, “You have Fibromyalgia.”

The thing with Fibromyalgia, it can’t be detected or “tested.” It’s hiding. You can seek answers and theories as to what is happening, and once everything else under the sun is ruled out, the diagnosis comes. You can come out of hiding.

Nerves are on fire, 24/7 just ranging from low to extreme. Muscles are weighed down and are being torn apart – almost as if they were tied to the rack, the ancient torture device that stretched people until their joins dislocated and limbs tore off. At least, for me this is how it feels on a level 10 pain scale day. In addition, fatigue is like Sleepy from “Snow White and the Seven Dwarfs.” No wonder there isn’t a way for a doctor to medically and physically see what’s going on!

But, once found, the game of Hide and Seek was over.

Hide and Seek became survival.