Recently, Bustle Magazine asked me to write a follow-up article to 10 Ways Living With a Chronic Illness is Like Training for the Olympics that was published on The Mighty for the 2016 Summer Olympics. The new article, Chronic Illness Put My Olympic Dreams On Hold. Here’s What It’s Like to Watch the Olympic Games in PyeongChang, went live on the Bustle website today. Check it out and let me know what you think.
October is Dysautonomia Awareness Month…
and I have some really, really exciting new to share with all of you.
Back in August, I was selected as a volunteer patient advocate for Dysautonomia International for my area and I submitted a request to city council asking for a proclamation on behalf of the City of Colorado Springs formally recognizing the month of October as Dysautonomia Awareness Month. So after following up on the request for weeks and keeping in touch with other volunteers from the organization, the city signed my request this week. It was formally announced today on the Dysautonomia International website and has been sent out to all the local newspapers and news stations in the area. I’m not sure if the story will be picked up but I’m so proud and honored to be given this opportunity.
Copy of the Proclamation
The Official Press Release
Posted on the Dysautonomia International Facebook Page
Can you tell that I was excited?
I’ll be posting a ton of awareness stuff throughout the entire month of October, although most of it will likely be on the Undiagnosed Warrior Facebook Page. You can visit the page here if you’re interested in learning more about Dysautonomia.
I will also have some really important medical updates to post as well. I’ll try to get those updates posted as soon as I can. Hope all my fellow warriors are managing okay.
Her story is very similar to my story and it’s heartbreaking.
Please share and spread awareness for such complicated disorders.
While I can’t say that 2015 was a “good year” for me or my health, and there were a lot of disappointments, frustrations, and a rollercoaster of emotions that come with being a professional patient, I did get farther than I ever had been in my search for a diagnosis.
That has to mean something right?
Although some of you may have seen this on my personal Facebook, most of you have not, and thought it would be worth sharing here as well so you can get an idea of what my 2015 really looked liked.
After looking at my year in review, I noticed I only had pictures from many years ago. Mostly, I’ve kept photos of this year off my personal facebook. But I think it’s important to share what my year really looked like.
I’ve had hundreds of medical appointments this year: doctors visits, medical tests, procedures, etc. I’ve been on 30 different drugs to help my symptoms. I’ve been told by doctors, insurance, and disability that I’m not sick. My diagnoses have changed a number of times and I’ve stumped a number of doctors, many of them looking into Google just to understand my disease.
I don’t post this for pity. In fact, I post for the opposite. Despite losing my job, friends, and overall quality of life this year, I’ve gotten (almost) straight A’s in school. I’ve advocated for patients just like me. I’ve talked with numerous people in and out of the U.S., some of who are worse off than me and many who have fought some of the same battles. Some of them lost their life to their illness.
This year has been hell, for me and those that I love, but I’ve come a long way and have learned so much. I’ve learned that I am strong and can survive almost anything.
I became a warrior.
I know there’s still so much more to do and other things to look into but I really feel like the new year will bring with it all the remaining answers that I need to solve my medical mystery. This has been a hard journey but I’m ready to start moving forward and hopefully regain my life in 2016.
Invisible Illness Week 2015
- The illness I live with is: Superior Mesenteric Artery Syndrome (SMAS), Nutcracker Syndrome (NCS), May-Thurner Syndrome (MTS), Pelvic Congestion Syndrome (PVCS), and Postural Orthostatic Tachycardia Syndrome (POTS). There’s at least one more condition still undiagnosed – but only time will tell.
- I was diagnosed with it in the year: 2015
- But I had symptoms since: I’ve had abdominal pain for as early as I can remember, but the real symptoms started around 1997 and have continually gotten worse over the years.
- The biggest adjustment I’ve had to make is: Giving up some of the things I love the most – working with animals, going to concerts, hanging out with friends, sports & activities, ghost hunting, traveling, etc. My life is rather limited at the moment.
- Most people assume: Before diagnosis most people thought I was sick because of anxiety or stress. Now that I have a diagnosis, a lot of people assume I have a lot of free time since I am I am on medical leave from work. They couldn’t be more wrong. I have anywhere from 1-5 doctor’s appointments or medical testing scheduled every week and my doctors all are an hour and a half away (3-hours round-trip, not to mention appointments/test can be anywhere from 1hr to 5hrs themselves). I also am still in school, since I can do the work on my schedule, and have the rest of life that EVERYONE deals with. Plus running this blog and volunteering where/when I can. My life is full of everything BUT free time.
- The hardest part about mornings are: Waking up and getting out of bed. I have trouble sleeping at night, so I am always tired in the mornings. Then when I actually do get up, I’m usually symptomatic and out of it. The minute I climb out of bed, the POTS makes my heart rate increase and blood pressure decrease, causing dizziness, clumsiness, and sometimes syncope. It takes a large cup of coffee and at least an hour to wake up enough to even attempt to get dressed and start my day, which is terrible for early morning doctor appointments as I have to account for this time by waking up an extra hour earlier than a normal person would.
- My favorite medical TV show is: Diagnose Me, Mystery Diagnosis, Monsters Inside Me, and House.
- A gadget I couldn’t live without is: My cell phone. I do almost everything on it.
- The hardest part about nights are: Being unable to sleep because of pain. Night is always the worst. You just lay there, all alone in the dark, with only your thoughts to keep you company.
- Each day I take __ pills & vitamins. (No comments, please): Daily: 13 unless I need “emergency meds” which can bring the total upwards of 20 pills or so.
- Regarding alternative treatments I:I’m open to try anything, but I go in with a bit of skepticism and I do a lot of research on it (even on traditional medicine) before I’ll put it into my body because I am way too reactive and sensitive to new things.
- If I had to choose between an invisible illness or visible I would choose: Invisible Illness. I can hide being sick when it’s necessary or when I don’t feel like explaining myself.
- Regarding working and career: I think if you can manage to work and maintain your health then you absolutely should. Unfortunately for most of us, it isn’t feasible to keep up with a 40-hour set work schedule, making it one of the first things to go.
- People would be surprised to know: I have symptoms every single day. Some days are better than others, but never do I truly experience an actual break. The symptoms can change from day-to-day, or even hour-to-hour, allowing me to “tolerate” things better at certain times. Still, even though I am in constant pain and feeling nauseous, I still get things done because I have to. I’ve learned to manage and fight against my body just to have some sense of “normal”.
- The hardest thing to accept about my new reality has been: Not having the support of certain loved ones. They haven’t to understand my diagnoses. They hardly ask me how I am feeling, or when they do they don’t actually listen to the answer. They don’t read my blog or like my updates on Facebook, but they’ll comment on other people’s statuses or share stranger’s stories about things like cancer or other acute illnesses. It makes me feel completely worthless and invisible sometimes, but I try to not let it bother me since I do have the love and support of so many others.
- Something I never thought I could do with my illness that I did was: Continuing to be persistent, despite being turned away from almost every direction. I kept pushing for the doctor’s to listen to me (despite normal lab results) and FINALLY got a diagnosis after all these years.
- The commercials about my illness: Unfortunately, my conditions are rare and there are no commercials. One of them (the Nutcracker Syndrome) JUST got placed on the rare disease list after multiple letters sent by people in my support group. How amazing is that? Hoping one day, they’ll all be there.
- Something I really miss doing since I was diagnosed is: Being active – either with cheer or roller derby, or even just hiking, swimming, or camping on occasion.
- It was really hard to have to give up: Working at the animal hospital. I loved it, but it killed me. When I left, I knew I’d never be coming back because of the strain it put on both my mind and body. I miss it severely.
- A new hobby I have taken up since my diagnosis is: Blogging 🙂
- If I could have one day of feeling normal again I would:I would love to be a patient advocate and help other’s navigate the healthcare system to find their diagnosis because it is really hard to do alone. Or counsel those with chronic illness. And of course, volunteer (at the very least) with animals again.
- My illness has taught me: To be hopeful. To see the struggle in others and to be kinder. To remain strong and to believe in MYSELF. But most of all – to know that I am capable of never giving up, despite the odds against me.
- Want to know a secret? One thing people say that gets under my skin is: “Are you sure you’re not just stressed… or that it’s related to stress…?” Super Sure – Thanks for trying, though.
- But I love it when people: Ask me about my conditions, how I’m feeling, or what the doctor are saying. It not only makes me feel validated, but it shows that you care and are interested in my well-being.
- My favorite motto, scripture, quote that gets me through tough times is:
“It can’t rain all the time” (The Crow).
“Here’s an optimistic thought: You’re not chronically ill, you’re medically interesting”.
“My list of diagnosed rare diseases may keep getting longer, but my determination keeps getting stronger”.
“When life knocks you down, roll over and look at the stars”.
“You are fierce, You’re a survivor. You’re a fighter through and through. Little brave, breathe. There is a warrior within you”
- When someone is diagnosed I’d like to tell them: First comes congratulations (usually because they have looked for a diagnosis for a long time). Then, I tell them that it’s all going to be ok because NOW they have the tools to fight against whatever it may be. Having a diagnosis is powerful and EMPOWERING. And last, but not least, that I am there for them in whatever way I can help.
- Something that has surprised me about living with an illness is: The lack of compassion from people in general.
- The nicest thing someone did for me when I wasn’t feeling well was:I am super lucky because I can think of so many examples, but what comes into my head first are the friends and family who visit me regularly to make sure I’m doing ok or when my husband will get me Starbucks before he comes to wake me up in the morning. Makes my day that much more special.
- I’m involved with Invisible Illness Week because: I think it’s important to bring awareness to the lives of those living with an invisible illness and how hard it is to try to live with a chronic illness. I don’t think most people understand, or even try to understand. You are constantly judged – by doctors, by family, by friends, by the public. . Hell, even those with VISIBLE disabilities judge us. It’s not right. Constantly having to prove that your symptoms are real and that you are actually sick, despite appearances. Just because “I don’t look sick” doesn’t mean I am not sick. It’s a bigger deal than you think or acknowledge. People have died because of these conditions. Others will commit suicide because of the pain and poor quality of life they experience. And more than likely, I am never going to “be better”. My only real hope is to be able to manage most of my symptoms so I can have a better quality of life. It’s like my ongoing struggle means nothing because “it’s not cancer” or some other condition you are more comfortable with or know more about. The public’s perception of invisible illness has to change and Invisible Illness Week is a great platform to educate everyone on what it’s really like to feel invisible.
- The fact that you read this list makes me feel: Loved.Thank you for taking the time out of your day to learn about me and my illnesses. You will never know how much that means to me – or anyone with a chronic illness for that matter. Thank you –just thank you.