My Experience Getting a Disabled Parking Permit

I’ve questioned if I’m “disabled enough” for a disabled parking permit for a long time. On the outside I look like your average eighteen year old girl, so people tend to downplay the severity of my chronic illnesses, and I was afraid to ask for help because I didn’t want to be laughed at or accused of exaggerating. Even though many people who have the same conditions as I do use a disabled parking permit, I was still apprehensive about asking for one.

My mom and I have been discussing this for quite a while, but when I found out I was going to college and living off campus, the conversation became more serious. The college I’m going to is very large and they have a huge parking issue. Even if I went to class two hours early to find parking there’s still no guarantee I’d find a spot, especially since students who live on campus are prioritized when it comes to parking. When I was going to community college I would get to school an hour early because the walk from the parking lot to the building, and then from inside the building to my class would take so much out of me that I would feel awful and needed time to rest to regain some energy.

Honestly, going through that routine everyday was incredibly tiring physically and very daunting every morning. Not even being able to get to class at a community college without at least a 20 minute break to recover was a reality check for how bad things really were. I would use all my energy to go to class, and then would crash and feel even more terrible when I got home, to the extent I wasn’t able to do anything at all for the rest of the day. Then things got even worse and I wasn’t able to do it at all.

I was really nervous to ask my PCP about the parking permit, especially since I just recently switched to a new PCP (my old PCP I had seen for six years and she ran out of ideas so I decided to get a fresh pair of eyes on my situation). However, she is pretty well versed with the whole Dysautonomia thing and everything that goes along with that, and she agreed that it would be beneficial to me especially in the school setting. Outside of school, I plan on only using it on really bad days. If I’m feeling decent then I won’t use it, or if the nearest available parking spot isn’t too far, I also won’t use it.

When we went to the DMV to actually get the permit I was nervous that they would think I was faking it, since I don’t fit the physical description of what most people who receive these permits fit. However, the man was very nice and everything worked out perfectly! I sat down while my mom stood in line, and then went up to the desk to give the man all my paperwork and my ID. I started to feel really terrible right after we got there, so when the man asked if I needed to sit down while he looked over everything, I was very grateful. My mom stood there while he looked over everything and got the placards, and then we were done! The whole process took maybe twenty minutes, which I was really thankful for since I thought it would be like the DPS where you have to wait for over two hours just to renew your license.

This is definitely not something I want to have to need, but I’m glad the process was easy and painless. I hope actually using it in the real world goes smoothly too!

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Clinical Trials and GI Woes and Moving Oh My!

So much has happened in the past month for me health-wise. My Pride Month posts were not as frequent as I had planned, since my health did not corporate this month. I had a lot of ideas for posts for Pride month that I still want to do, they just obviously won’t actually go up in June.

I started taking Corlanor again for my POTS and IST, and this time I didn’t have a bad reaction! I’ve taken it for a month, and haven’t seen any improvement but I’m still hoping I will soon. I’ve been exercising about 3 times per week, which is good! It does take up all of my energy though so on days I work-out I’m not able to do much else besides that which is annoying. My POTS symptoms have only gotten worse since I started making all of the changes they suggested at Mayo, which is really frustrating. At this point I can’t be out of my house for more than one hour before my body starts shutting down. That time is even less if I have to stand or walk a lot, or if I’ve had chores to do around the house.

My GI tract is a bit of a long story. My GI started me on a muscle relaxer for the PFD which seemed to relieve some of the constipation, although I was continuing to feel worse. I had an x-ray done of my abdomen and my entire colon was full of excess stool, so things were not in fact getting better. First they had me drink mag citrate to try and clear it out, but it only cleared a little bit of it. Then I drank colonoscopy prep, which I thought worked for a few days, but it didn’t. My gastroparesis was not a fan of me drinking the prep, because it was a large quantity and you had to drink it quickly, This resulted in me continuously throwing it up every time I drank another glass.

My Gastroenterologist is trying to figure out a long term solution for the constipation since nothing seems to work. He thinks that Dysautonomia is causing me to have really bad intestinal dysmotility. I’ve been WAY more constipated than this many times, but I didn’t have any imaging done so I have no idea how far the stool was backed up then.  I’m so distended I can’t wear jeans or anything without an elastic waistband, and I look a solid five months pregnant. I’m currently drinking more mag citrate in hopes it will work this time, so cross your fingers for me!

In June I started a clinical trial for a gastroparesis medication. It was a double-blind trial that used 50% placebo patients and 50% drug patients. Obviously I can’t know for sure, but I think I may have received placebo because I only became more symptomatic while on the medication. The intestinal issues probably played a role in that too though. The experience has been really interesting, even if it wasn’t helpful for me. It’s still really cool to be contributing to science that could benefit me and others with gastroparesis in the future. I’ve also learned a lot about clinical trials, which will be good to know if I ever participate in another one!

On a more personal and not medical note, we’re moving! I talked about us looking for a new house well over a year ago, but the timing ended up not working out. However, we finally found a house we really like in the city over from us, which is about 30 minutes away. We closed on the new house on the 26th of June, and we put our house on the market on the 22nd. There’s already a contract on our current house so we’re hoping it will sell and close on July 24th. I’m really excited about the move, and feel like the change will be good for me. It’s not far at all from where we are now and I’ll still go to the same college so that’s definitely a plus!

I started an online summer course at the beginning of June and it ends in less than a week. I was nervous that with my health being so poor right now that I wouldn’t be able to do it, but the class has been really easy and the work load is super light. I’m taking Spanish 1 and since I took two years of Spanish in high school it’s been more of a refresher. It feels really good to be able to succeed at something after my bad Spring semester and withdrawing.

Things have been really tough for the last few months. Some days I start to feel like I’m hitting my breaking point. I try not to think about everything too much, but when you spend most of your time alone it’s hard not to think. I’m really trying to stay hopeful that things will improve soon. I hope you all are doing well! What have you been up to lately?

– Alyssa

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!

 

 

 

Mayo Clinic Days 1-2

This trip has been a whirlwind already!

I arrived in Rochester, MN on Sunday March 11th in the afternoon, and had my first appointment the following morning. Walking into Mayo was unlike walking into any hospital I’ve ever been to before. For one, it’s massive and the sheer number of people walking around can be overwhelming. The employees are super friendly, and they have tons of staff whose sole job is to tell you where to go. It’s very easy to get lost, but when you do there is always someone to help. Most of the people there are old, which I guess isn’t surprising since the majority of sick people are old. I was definitely the youngest person at most of my appointments by a good 40 years, but there were a handful of people who were probably between 16-35.

My first appointment was a chest x-ray, which was started and completed before my appointment time. They are incredibly efficient, and don’t waste any time. I then had an EKG, which also went incredibly smoothly, and finished off my cardio tests for the day with the placement of a Holter monitor. I had done all of these tests before, so I’m not sure why they repeated them as they didn’t offer us any new information.

That afternoon, I had a gastroenterology appointment. I really liked the doctor I saw, but was definitely shocked by what he wanted to do. He thinks my GI symptoms are either caused by pelvic floor dysfunction or are a motility issue. I knew what pelvic floor dysfunction was from following some blogs here on WordPress, but I never thought it related to my issues. He ordered an anorectal manometry test, which I was incredibly nervous for and had a minor freak-out the night before over. If you don’t know what that is, google makes it sound way worse than it is, but it still is a very uncomfortable and degrading experience. I think my GI issues may be motility issues, given my autonomic dysfunction. I have a GI transit study scheduled for later this week.

I did the anorectal manometry test the following day, after some blood work. I had to do an enema prep before the test, and since my stomach was already not doing well that day, it made me really sick. The test itself went pretty quickly, as uncomfortable as it was. I don’t know my results yet, but from what I’ve read I’m pretty sure I’ve passed with flying colors and don’t have pelvic floor dysfunction. After that was over, I had an echocardiogram in the afternoon. I’ve also done this test before, so it wasn’t anything new. The woman who was the technician for my echo would tell me to “stop breathing” instead of saying “hold your breath” which I found very amusing.

All of the cardio tests are being reviewed today (Wednesday) and after more testing everything will be reviewed by gastroenterology later this week. I’ll keep ya’ll updated with everything else that’s going on this week. I hope you are all doing well!

Dear Body,

The Dear Body Project was started by Ari Fitz. She asked some of her friends to join her in writing love letters to their bodies to promote body positivity. Since then, many people have started writing letters to their own bodies and posting them as videos, letters, and photo captions on social media. Here is my love letter to my body.

 

Dear Body,

Wow we’ve been through a lot together. I often find myself blaming you instead of recognizing how much you’ve been through. For many years, it felt as if I as a mind, were fighting you as a physical being. A battle I felt you always won, yet somehow we both lost in the end. Together we’ve gained weight and lost weight, gained confidence and lost confidence. We’ve struggled to stay alive, and we’ve celebrated living life to the fullest.

When people talk about disabled bodies they often say, “You are not broken, you’re beautiful,” but I believe we are both. Beautifully broken. Not that every aspect of you is always beautiful, but I’ve learned it doesn’t have to be. Thank you for doing what you can, even when I feel like you aren’t doing enough. Thank you for teaching me that my value does not rely on others traditional measurements of success. I’m sorry often I don’t believe you.

I don’t appreciate or praise you enough. I want you to be perfect, look perfect, and work perfectly, but those aren’t fair expectations. I promise to try and not make perfection the goal, but you know how meticulous I can be. I am learning perfection is subjective, and you are perfect at doing what you are able to do. Thank you for continuing to fight for me, not against me, even when it feels like the world is fighting against us.

Love,

Alyssa

 

The Language of Disability

Not that long ago I didn’t consider myself disabled. Society had taught me disabled people were in wheelchairs, had some level of impaired mobility, or had moderate to severe cognitive disabilities. Sure chronic illness had completely taken over my life, but in my eyes I wasn’t disabled enough.

Fast forward to maybe nine months ago, I realized I was in fact disabled by my chronic illnesses and took on the label with pride. For me disabled is both a description of how chronic illness affects my life and a political label. I don’t have a problem with being referred to as disabled, because it’s true.

A lot of people however don’t seem to like the word “disabled.” When I was in high school I applied to become a “Best Buddy” which is a program where you befriend someone in the special education program. Fortunately or unfortunately for me (depending on how you look at it) they didn’t have enough special ed kids for all of the volunteers to have a buddy, so I never got one.

I did go to a training class after school one day, and something from it has stuck with me. They talked about how you shouldn’t ever say someone is disabled, instead say “a person with a disability, differently abled, or handi-capable.” The funny thing about the language of disability is I only see parents/caretakers asking people not to say disabled, never actual disabled people. I’m sure there are disabled people out there who don’t like the term, but I personally haven’t run across any. Many people take on the label with pride and try to advocate for themselves and others with disabilities.

I personally have a problem with the term “differently abled.” Disabled people aren’t differently abled, they are disabled. There are things we can’t do, point blank, end of story. For me some days I can do something and the next day I can’t, but there are also things that I’m never abled to do no matter the circumstances. “A person with a disability” isn’t offensive, I just find it unnecessary. The argument for the other side is that you should put the person before the disability. I feel you don’t have to take that literally. As long as someone is being respectful and isn’t  using a demonizing or belittling tone, then there isn’t anything wrong with saying “disabled people” or a “disabled person.”

Of course you should treat someone like a human being, and not reduce them to their diagnosis. However I don’t fid it necessary to say “person with a disability” every time you speak about disabilities. What are your thoughts? Do you use the term disabled to describe yourself?

Isolated

Chronic illness is isolating.

I have spent the majority of the past five years alone, in a dark room. I no longer attend high school, and I don’t talk to any of my old friends. I’m not saying these things for pity, or sympathy; they are just simple facts.

Chronic pain keeps me from doing or enjoying pretty much everything I used to. I got sick during the transitional time from elementary school to middle school, so making new friends became really hard. Now that I’ve started online school, I don’t see anyone from my old high school or talk to them. The only “new places” I’ve been going are doctors offices – so I don’t think I’m gonna find any new friends there, but hey ya never know.

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After a few months/years friends and family get tired of asking me how I am feeling. They assume I’m gonna better, and forget I’m sick. But I don’t forget; I don’t have that luxury. They get tired of hearing me say “I’m in pain” or feel fatigued. They no longer want to know about my doctors visits or hospital stays. I don’t blame them, the never ending cycle of chronic illness is tiring and generally negative. Friends were the first thing I lost. A few close ones stuck around a couple of years, but now they’re gone too. My immediate family is still here for me, but my extended family never asks how I am anymore. I don’t need/want them to make a big deal about it – but it would be nice if they’d ask about me every once in a while.

Being alone almost all the time makes going out in public hard. I’m sensitive to noise, and the world is one big ball of sound. I never had social anxiety before, but now it’s exhausting being around other people. I feel emotionally drained even being around family. I know I’m gonna have to get over this, because I can’t stay in my room at my parents house for the rest of my life. I want to go to college and get a good job. Both of those things are gonna have to involve being around other people on a daily basis. I can have a negative outlook on life, and when a lot of negative things are going on it makes it 10x more difficult to act cheery and positive. .

If you find chronic illness isolating – you’re not alone. I’m here and probably in my pajamas.

Lots of Love,

Alyssa