Fibromyalgia Awareness Day 2018

May 12th, 2018 is Fibromyalgia Awareness Day…

and let me tell you I am VERY aware I have it!

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When most people think of fibromyalgia, they think of middle-aged women, but it can happen in younger people like me as well! Fibromyalgia is typically characterized by widespread pain and fatigue, but it comes with a whole host of other symptoms. The first time a doctor suspected I might have fibromyalgia was back in spring of 2017. I wasn’t diagnosed at that time, because my Rheumatologist wanted me to get all of my other health issues diagnosed first, in case they could have been causing these issues. After going to the Mayo clinic in March (with some confusion that now has been cleared up) I was diagnosed with Fibro.

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While it’s hard to differentiate what chronic illnesses causes what issues when you have multiple like I do, my fibro seems to mainly cause joint, muscle, and bone pain, as well as fatigue, brain fog, muscle spasms, intermittent insomnia, and allodynia. Many people think that people who are diagnosed with fibromyalgia are “faking” and that fibro isn’t real, but it has been scientifically proven to be a real disorder. These kinds of ideas are outdated and very harmful to those with invisible illnesses. I personally wish it wasn’t real, then I wouldn’t have it!

fibro problems

Fibromyalgia is one of the most common chronic pain disorders, yet it is very difficult to treat and the options are limited. This is why awareness, and research are crucial in order to create medications and therapies to improve our quality of life.

So hug your local person with fibromyalgia today, just not too hard 🙂

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Unrest Documentary: Millions Missing

Unrest is a documentary, made by Jennifer Brea, who is a woman that has Myalgic Encephalomyelitis or Chronic Fatigue Syndrome. In her documentary she shares what her experience with M.E. is like, as well as others experiences within the community. Unrest is a though provoking and heartbreaking film. Jennifer Brea shows the good, the bad, and the ugly, but more important she gives the viewer an honest and raw look at what it is like to live with a severe chronic illness.

 

This was definitely not an easy film to watch for many reasons, one being how it drew on my own experiences, and another being how well is shows the injustice disabled people face. Brea started an event called, “Millions Missing,” to raise awareness for myalgic encephalomyelitis. Tomorrow, May 12th, is the third annual Millions Missing protest, that aims to reach “increased government funding for research, clinical trials, medical education and public awareness.” You can become involved in the protest by going to a location near you and protesting or by letting them know you will be protesting virtually.

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I am impressed with how accessible they have made this protest. Activism in general can be incredibly inaccessible, and seeing steps like these made in order to let anyone who wants to participate be a part of the event is truly amazing. Of course this is on their minds due to the whole event being about disability, but I hope to see others follow in their footsteps when it comes to making protests accessible. Jennifer Brea is a great example of what we need the leaders of disability activism to look like. She is disabled, unapologetic, and keeps others needs in mind when planning events. She also is dedicated to sharing more voices than her own, which is so so important. The disability experience is vast, and differs from person to person even when they have the same illnesses.

Millions Missing is the perfect name for this protest. It really shakes me up to think about all of the wonderful people who are “missing” from a regular life due to illness. I personally have dealt with this, being “missing” due to being mainly homebound. It’s incredibly isolating and lonely but events like this really help. Our stories are worth sharing and people should be aware of our lives. Thank you Jennifer Brea for contributing much an amazing movement!

 

 

 

Finally Having a Diagnosis

After visiting the Mayo Clinic, I finally have a diagnosis for my chronic health issues. I’ve been waiting six years for a diagnosis, but the experience of actually receiving one has been quite different from what I imagined. Maybe this is because I was diagnosed with so many things all at once, which quickly became overwhelming. I’ve definitely learned a lot in the past two months, and have had many things to contemplate.

Receiving a POTS and Dysautonomia diagnosis was in no way surprising. I’ve been tasking Doctors to test me for autonomic conditions for two years. After I did the autonomic testing, I received a phone call the following week to tell me the results, which did in fact confirm the diagnosis. I instantly felt relief. There was no more guessing, and no more begging doctors to listen. I also love being right, so I felt quite smug although this is not the kind of thing you want to be right about. I was relieved to know that I didn’t need to have an ablation or a pacemaker.

Then frustration hit, because dysautonomia is not something that is easy to treat, and there just aren’t many options. I’ve already taken every medication used to treat POTS when they thought I just had inappropriate sinus tachycardia, and they all failed. I’m trying to have hope that a few lifestyle modifications will help, but realistically I know that many people still struggle after making those changes. I made as many changes as possible right away, and so far I’ve only felt worse. I do think (or at least I want to believe) that some of these things will help at least a little bit, but it’s going to take more like six months to see any results.

The gastroparesis and pelvic floor dysfunction are two things I definitely didn’t think I had. I had always associated gastroparesis with a lot of vomiting, and since I rarely vomit I didn’t think it pertained to me. Now that I have the diagnosis I can recognize quite a few of the lesser known symptoms that I have, but never thought much about. I also didn’t realize just how many of my symptoms corresponded with eating until I started paying more attention to them. When your body is constantly doing weird things you don’t always voice all of them. When I do bring up a new symptom to my parents, they always say, “When did that start?” and I’ll be like,” well it started like six months ago…” because if I told them everything that my body does that it shouldn’t do I would never stop talking.

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Leaving school because of all of this has been really hard. My education is so incredibly important to me, and to have to pause it once again has been difficult. I also hate being unproductive, but many days I just don’t have a choice. I am planning to return to school in the Fall, and maybe even take a Summer course online. I don’t know if this is foolish, since I’ve only gotten worse in the past two months, but I need something to look forward to and to work hard for.

When I was undiagnosed, I never knew what the future held. That was both terrifying and relieving. It left a tiny glimmer of hope that maybe this would all end one day. Now that I know it won’t, it’s not the easiest thing to cope with. Realistically my life will probably look a lot like it does now forever. I’ll have good days and bad days, I’ll flare and I’ll have months where I’m able to be around 60% functional. I’m still trying to figure out what I should do about my career path, knowing my body cannot handle a job that requires me to do much physically and that I cannot work long hours.  However, there’s always the possibility that things will truly get better, so I don’t want to hold myself back.

I try not to think too much about the possibility of things getting worse, but it’s always kind of hanging around in the back of my mind. Having a diagnosis hasn’t necessarily given me much peace of mind, but I am glad that my treatment options can be tailored towards the cause of my problems instead of just guessing. I’m still working on the whole “positivity” thing. It doesn’t always come naturally to me and I think I just need some more time. Overall, I am grateful for the answers I have received. I have spent too many years begging for any answers, so to have figured out quite a few of my issues has been indescribable. It’s still hard to wrap my head around the fact that we know what’s wrong. For so long I was a “head-scratcher,” a “difficult case,” and a “medical mystery.” I’m still just a girl trying to figure it all out, but at least this girl has some explanation for it all.

Reblog- Healthcare Access & Disability

I wanted to share this post from Trailblazing with CP about disability culture, and disability-inclusive healthcare. Amelia does an incredible job of articulating the importance of disability-inclusive healthcare, and how the social definition and medical definition of disability affect how she views her experience as a disabled person.

Access to good quality, disability-inclusive healthcare is a hot topic these days in the disability community, and for good reason. It’s hard to find. A lot harder than you think. Why? Well, a multitude of reasons, honestly. In my opinion, it boils down to a lack of adequate disability awareness training in medical school, a […]

via Healthcare Access & Disability — Trailblazing

Watching Your Family Members Age

Last year my Grandmother was diagnosed with Late-Onset Alzheimers. She is now 77 and her memory has gotten significantly worse in the past few months. Recently, she forgot to take her blood pressure medicine for two days and ended up in the emergency room with crazy high blood pressure. Watching your family member age is not an easy thing.

My mom is having the hardest time with it, and rightfully so as she is her daughter. I’ve never been very close with my Grandparents, so while it is sad and hard to see her struggling, it doesn’t affect me the same way it affects my mom. Her condition became much more apparent to us after my mom visited her a few weeks ago. My Grandparents volunteer to lead a church service at a nursing home in their town and since my mom was visiting them, she went with them to help. My grandmother can no longer play the piano, because she’s forgotten how, but she also forgets that she can’t play anymore. She gets really embarrassed when she tries to play and then realizes she cannot do it anymore, which unfortunately happened on Sunday. She also introduced my mom to the same person three times, one of which she introduced my mom as her son, and my grandmother only has four daughters.

We try to remember that 77 is quite old, and is lucky to have made it this far before the Alzheimers became a major issue. My Grandfather, who is 78, does a great job of taking care of her, but he is also old and is just beginning to deal with some typical forgetfulness that comes with old age. It’s become clear they may need extra help sooner rather than later. I feel like people don’t talk about how difficult dealing with aging family members can be and how difficult it can be one those who are aging, but maybe that’s because people my age tend to not to have to think about that.

Although the validity of the testing has been questioned quite a bit, I had genetic testing through 23&Me done about six months ago (My PCP wanted me to do this to see if I had a certain gene that affects how you metabolize medications, but that’s beside the point). Nothing too interesting came out of it, but it did say I had an increased risk for late-onset Alzheimers. It’s not shocking, but it’s also not something you want to happen. It actually freaks me out more that my mom might get Alzheimers than it does for me to get it. I’m used to having health issues (and I won’t be old for like a reeeeaally long time) but I just can’t imagine her forgetting who I am. That’s a scary thought. However, there’s no need to fret about that now since it’s not happening in this moment.

I do worry about my Grandmother, and my Grandfather. I know it kills him to watch her slowly slip away. They’ve been married for nearly 60 years, and have been together since they were 18. She’s obviously struggling too, but she doesn’t notice when she tells the same story repeatedly or recognizes someone incorrectly. In some ways it’s better that she doesn’t know for her sake, but it only makes it more heartbreaking to think about for everyone else.

I’m learning aging isn’t  fun for anyone involved.

 

Day of Silence 2018

TW: Brief mention of suicide and mental health

GLSEN’s Day of Silence “is a student-led national event where folks take a vow of silence to highlight the silencing and erasure of LGBTQ people at school.” The Day of Silence was created by a group of students at the University of Virginia in 1996.

“Nearly 4 in 5 LGBTQ students don’t see positive LGBTQ representation in their curriculum, nearly 9 in 10 experience verbal harassment, and almost a third miss school for feeling unsafe or uncomfortable. The Day of Silence is a national movement to highlight the silencing and erasure of LGBTQ students in school, which demands that school leaders take action to be more inclusive.”

I have never had a teacher speak about LGBTQ+ rights, or even acknowledge that someone they were talking about was a part of the LGBTQIA+ community in my entire life. I never learned about the Stonewall Riots in school, or the AIDs epidemic. I never read a history book that acknowledged our presence. Queer history is so important, and yet it is completely silenced in our education system. This is just one of many issues that leads to silencing and erasure in schools.

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“Safe Schools For All”

In my high school we had a GSA, but I never got up the nerve to go. Just a few weeks after I had come out to my family, an “advertisement” was played on the school announcements  for the GSA. Afterward, the boy who sat next to me laughed and said, “It’s so sad that we actually have one of those.” I felt gutted. Other kids laughed and they continued to make homophobic remarks. Was this a direct attack on me? No, they had no idea I was gay. Did it make me feel ashamed, outraged, and embarrassed? Absolutely.

I wish I could say that I stood up for myself and my community, but I did not. I was kind of scared and hurt, especially since it was all so new to me. Their laughter and bigotry made me feel as if I couldn’t speak up. However, I have had it so much easier than many LGBTQIA+ students; I’ve never been bullied or directly discriminated against. Hearing people say awful things, whether they realize it’s about you or not, is still hurtful.

Far too many LGBTQIA+ students suffer from mental health problems as a result of the bullying and general intolerance at their schools. We lose so many amazing kids to suicide, because of the abuse they face. Marriage equality didn’t end homophobia or transphobia, and it certainly didn’t make the United States treat LGBTQIA+ citizens as complete equals. We still have a long way to go, and we need protection of LGBTQIA+ students.

The Incompleteness of Being Single

In January, I read Rupi Kaur’s poetry book, milk and honey and one poem in particular really stuck out to me.

” you are in the habit

of co-depending

on people to

make up for what

you think you lack

who tricked you

into believing

another person

was meant to complete you

when the most they can do is complement”

When people are in relationships they often introduce their significant other as their “better half.” Before this poem I had never really contemplated how much society tells us we are lacking something by simply being individuals. We are not whole until we’re in a relationship, and a relationship is something we should always desire.

No one can complete something that is already complete. I like the idea of complementing each other. Your significant other should bring out the best in you; they are not the best thing about you. I feel like younger generations are becoming less interested in being in long term relationships and getting married. Independence has become valued over commitment. From a certain standpoint, I understand that. Co-dependence can be toxic, and it’s important to learn how to exist as an individual.

The line, “co-depending on people to make up for what you think you lack” is so profound to me. We should not look to others to “make-up” for anything, but should instead focus on how we can better ourselves. This definitely goes both ways.  I believe people shouldn’t enter into relationships with the mindset that they are going to change their partner. You should accept your partner for who they are, and respect who they are out side of the “us” that you’ve created. You are not the reason they are great. If they were great before you, then they will be great after you.

If you aren’t interested in being in a relationship for any reason, that’s perfectly fine! I find it so odd that the general consensus seems to be that if people aren’t married or at the very least in a long-term relationship by a certain age, then something must be wrong with that person. Having different goals in life is perfectly fine. It’s also fine if you want to be in a relationship, but just haven’t found the right person yet.  “Co-depending” on people to try and compensate for the things you hate about yourself is not healthy, nor will it harvest a healthy relationship. In my eyes, it’s much better to be single, then it to settle in an unhappy relationship, hoping the things you don’t like about them will change, and believing you lack something without them.

Have you read any of Rupi Kaur’s work? What do you think of this poem?