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 These kinds of ideas are outdated and very harmful to those with invisible illnesses.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!

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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.

Life Update: Withdrawing from College

This semester has been incredibly rough for me.

Some of it I have shared with you, like documenting my journey at the Mayo Clinic, but there’s been a lot going on that I haven’t talked about yet. My health has been very poor since around the last few weeks of Fall Semester, and has been continuously getting worse. This was one of the major reasons I chose to go to Mayo in the middle of Spring semester. Unfortunately I missed a lot of class before my trip, and then a whole week for the trip (my first trip was during spring-break so I didn’t miss any class for that). While I was successful in obtaining multiple diagnoses, the treatment options are very limited.

As of right now, they are mainly focusing on the lifestyle changes; things like exercise, following the gastroparesis diet, and eating tons of salt. These things may or may not work, and if they do work it’s going to be months before I see any improvement. Since returning from my trip, I’ve only become more symptomatic and much less functional. I’m honestly not sure what to do right now, since I know if I contact the Mayo doctors they will probably tell me to just keep trying to do these things since it hasn’t been long enough to see results, but at the same time my body is incredibly weak and doing simple life tasks can be very difficult.

Missing this much school has seriously affected my grades. Some of my professors have been great, and others have been awful. I have disability services, but they aren’t very helpful and professors have found loop holes that essentially disregard any accommodations I’m supposed to have. It’s crazy how little legal protection disabled people have, but that’s a whole nother can of worms. I made the decision to withdraw from college, since my Spring semester grades were going to tank my GPA. I really wanted to only withdraw from the two classes I was doing poorly in, and stay in the two classes that I had nearly perfect grades in, but that isn’t an option at my college.

This also means I will not be able to transfer to a University in the Fall. I won’t have nearly enough hours after I lose these 14. Now, I’m going to have to do at least one more semester at community college, maybe two. I’m trying my best to remind myself that I’m only 18, so I’m actually ahead of my peers by at least one college semester, but withdrawing makes me feel so behind. There’s a lot of emotions to process, and I’m doing my best not to fall into a pit of despair, but it’s been really tough. I think hope and positivity are important when it comes to living as a chronically ill person, but I also think it’s okay to recognize that some situations just suck.

I’m planing to return to college in Fall, or even take a Summer class if I’m able to get my health under control enough. As difficult as this decision is, I know it is the right one. This is not the first time I’ve had to withdraw from school, as many of you know, I started this blog right after I withdrew from high school in November of 2016. It’s crazy to think that almost 18 months later I’m having to do the exact same thing. I’ve got to say it doesn’t hurt any less the second time around, but I know from the first time that it will get better.

Chronic Migraines in Children

My journey with chronic migraines began when I was fourteen. They were brutal for about three years, but around a year ago I started to get significantly less migraines. Being a child with chronic migraines was really difficult, mainly due to the ignorance of adults. Migraines are often seen as something that only affects adults, and many people do not understand the severe impact they can cause on someone’s life.

The Diamond Headache Clinic asked me to share information about childhood migraines, and I was happy to oblige since there is not nearly enough awareness about them. I highly recommend viewing their presentation, because it is full of lots of great information about chronic migraines and abdominal migraines in children!

Here are some of the statistics I found interesting:

  1. The average onset for migraines is 7 years old for boys, and 10 years old for girls
  2. After the age of twelve, around 80% of people who suffer from migraines are women
  3. Migraines affect up to 5% of school aged children

 

Treatments for chronic migraines typically include preventative medications, triptans, and sometimes NSAIDS. In my case, these things did not work for me due to a plethora of underlying medical conditions. It’s always important to make sure you don’t have any other medical problems that could be causing the migraines.

Do you have migraines? What’s your journey for treatment been like?

Mayo Trip 2: Day 3

Day three at Mayo, I started off by seeing another cardiologist. I wasn’t given a reason for why I was seeing him, and he wasn’t so sure either. Essentially it was unnecessary, and all he said was to stop taking digoxin and gave me a tapering schedule. He asked me if medications have helped my symptoms or if I mainly just push through, I responded by telling him medications have never worked very well for me, so I mainly push through the symptoms as best I can. After praising me for coming to that realization, he gave me a fifteen minute lecture about how so many people are way more disabled than I am, and so I should just push through and not “let my illness define me.” Then he tried to use Stephen Hawking as inspiration porn, which made my blood boil, but I did my best to keep a pleasant face and my mouth shut. I am very happy there is no need to see him again.

I got my results back from the norepinephrine testing and it was normal, so no hyper-POTS for me. They also did a urinalysis to get a base line of my sodium levels, and the autonomic neurologist told me I drink too much water. It’s kind of ironic that I’ve been lectured about drinking lots of water over the years and now I’m being told to decrease my water intake by .5-1 liter. I did drink more than normal that day, because I wanted to make sure the results didn’t make me look dehydrated, and it seems like maybe I went too far. What can I say, I’m an over achiever! 🙂

I saw the fibromyalgia clinic and they were super nice. To be honest I’m a little confused whether I have fibro or not. Apparently I meet all of the 1990 criteria, but it’s questionable if I meet the 2010 criteria. However, she believes when I’m in more of a flare as far as the joint and muscle pain goes that definitely do meet the criteria. Plus I meet the criteria for chronic fatigue syndrome. In her report she wrote “probable fibromyalgia” but the way her nurses report was written it sounded like I had it for sure. Basically I’m supposed to follow suggestions they make for fibro patients, but it’s unclear whether or not she gave me an official diagnosis. I think she did, but it was confusing.

I was supposed to go to a class on fibro today, but it lasted for 8 hours and I’m honestly just so ready to get out of here. I feel like after hearing her recommendations and hearing the autonomic neurologists recommendations that I know what I need to do, and the class may not be all that helpful. Mentally this has been very taxing and at this point in time I think I just need to go home, rest, and assimilate back into daily life. We’re leaving this afternoon, and have no more appointments. I have a lot to process, but I feel very privileged to have been able to go to Mayo and overall I had a very positive experience here. Cross your fingers I don’t have to see the inside of the Rochester airport for quite a while!!

Mayo Trip 2: Days 1-2

I’m already back at Mayo and a few days into my trip! I flew into Rochester on March 22nd, and had appointments on the 23rd. The flight went smoothly, but walking through the airport takes so much out of me. On Friday I had two appointments, one with a gynecologist to have a consult for the possibility of endometriosis ,and one with an autonomic neurologist to talk about / confirm my POTS diagnosis.

The gynecologist visit went fine, but was super inconclusive. He didn’t think I have endometriosis but had no explanation for my super irregular periods. The only way to truly know if you have endometriosis is to have a laparoscopy, but he kind of beat around the bush when I asked if that was something I needed to do. At this point I’m probably just going to continue tracking my periods, and if it’s still an issue later on go see another gynecologist for a second opinion, but endometriosis isn’t a huge concern of mine right now.

I absolutely loved the autonomic neurologist! He confirmed my POTS diagnosis, by evaluating my autonomic testing results, and doing a very thorough neuro exam. He thinks I have hyperadrenergic POTS, and had me do a weird blood test to test my norepinephrine levels. First they place an IV, which took them over 30 minutes and 3 sticks before they got it, because my veins sucks. Then you have to lay completely still in a quiet, dim room for half an hour, in order to simulate what your norepinephrine levels are like while you are sleeping. After that, a nurse comes into the room very quietly, and you cannot speak to them or move while they draw the blood. When they’re done, you have to walk around for 10 minutes (or at least sit up in a chair if you can’t walk) to raise the norepinephrine levels, and finally they draw your blood again. I’ll get the results back from that by the end of this week.

The neurologist went over all of the “lifestyle changes” that are supposed to help with POTS, like eating tons of salt, drinking a lot of water, exercising and wearing compression garments to keep your blood from pooling. I thought it was interesting that he recommended wearing compression style shorts and a shirt under your clothes, because I’ve seen a lot of people with POTS use thigh-high compression stockings. According to him, the blood pools in your thighs and abdomen mostly, so those stockings won’t be as much help, unless you get the ones that go all the way up above your belly button. I really hope making these changes will be helpful, but I know they don’t work for a lot of people, or at least aren’t enough to make them functional.

He talked about putting me back on corlanor if after I try these non-pharmaceutical things, and they aren’t enough. He believes that it might work better for me, when I have a higher sodium level in my body. I hope all of this helps, because I have not been doing well at all. The gastroparesis has caused me to be widely nauseous and not able to eat very much, and the POTS has made me so incredibly tired and light-headed. Add traveling to the mix, and you get one very exhausted spoonie. The neurologist thinks I have mast cell activation syndrome as well, but since I have so much other stuff going on right now, we’re going to hold off on doing more testing for that. Given the dysautonomia and my symptoms I most likely have it, and the reactions have become more frequent. The past five days alone I’ve had a reaction to a new t-shirt, makeup that I’ve worn for over a year now, marijuana smoke (thanks a lot to the assholes smoking in our hotel), and one every single time I’ve taken a shower. Needless to say, Benadryl is my best friend.

I also saw a nutritionist, but she wasn’t very helpful so there’s not much to say about that. I still have a consult with a different cardiologist this week, as well as an appointment with the fibromyalgia clinic to see if I have fibro. I really want to go home, but I’m grateful to be here and I know I need to be here. This post was kind of long, so thanks for sticking around for the end. I hope you all are doing well!