Sunburnt: Chronically Misunderstood

My face is red, in fact my whole body is red. The severity of the redness changes- sometimes it’s only faint, and other times I look like the human embodiment of a tomato. Most of the time I’m somewhere in the middle. This is not a new experience, I’ve dealt with severe flushing since shortly before the start of my health issues. After my recent diagnosis of Mast Cell Activation Syndrome, we assume that’s probably the cause, and it is sometimes exaggerated further by over-heating from POTS. No matter the cause, my face is red and people have a lot to say about it.

Everyone and their mom thinks I’m sunburnt, and also thinks it’s okay to comment about it to me. “Do you have a sunburn?” “Why are you so sunburnt?” “Do you always look like this?” “Is you’re face always that red?” “You should wear sunscreen!” “What’s wrong with your face?” I could go on, but I think you get the point. Every time this happens I use a response similar to, “No, I’m not sunburnt, this is just my skin.” and I stare blankly back at them.  That’s when things go to the next level of awkward. You’d think people would be embarrassed that they made that completely uncalled for and inappropriate comment, but they never are, not even the slightest bit. I usually get an uncomfortable look from them and another comment like: “Oh well I wish my skin was like that!” or “That’s weird that your skin does that without being in the sun.”

“Oh well I wish my skin was like that!” is my least favorite follow up comment. No, you don’t want to have skin like mine. It isn’t cute or pretty, and it doesn’t have to be. Do not patronize me by acting like it’s desirable. Not everything in life is pretty, and that’s okay. I’d rather acknowledge that it doesn’t look good then live in some fairy tale world where everyone wants to look like a tomato, because that simply isn’t true. The comments are abundant during the summertime, since that’s when the most people are sunburnt. For the record, I am not offended by these statements/questions, they are just really annoying.

I used to be super self-conscious about my skin, but I feel better about it now than I ever have before. I can chose not to wear make-up and still feel good about myself, which used to be something I couldn’t do. Most of the time I still wear makeup though, because the comments are tiring and I don’t want to answer questions about it. Although, even with makeup on, the redness in my skin is still very visible. When I was self-conscious, the comments definitely made me feel worse than I already did about my appearance. One of my least favorite things about the flushing is that when it’s the worst, I usually am feeling really terrible, and the last thing I want to do when I’m feeling sick is explain to people why my body does not look how they think it should look. Existing in public while feeling ill is worse enough, dealing with comments like these only adds insult to injury.

Moral of the story? Just don’t comment on other people’s appearances, don’t ask questions that are none of your business, and if you mess up don’t make it worse by making another dumb comment.

 

 

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Remembering Claire Wineland

Claire Wineland was a pivotal member and advocate for the chronic illness community. She was a 21 year old with Cystic Fibrosis, who passed away on September 2nd, 2018, a week after she received a double lung transplant. Claire was everything I aspire to be as an advocate, activist, and human being. She was outspoken and honest, she was funny while always being very raw about the realities of living with a terminal illness. Claire didn’t sugar coat things or act as if living with a chronic illness was easy. One of my favorite quotes from Claire is:

“Death is inevitable. Living a life we can be proud of is something we can control.”- Claire Wineland

I’m not one to call disabled people inspirational given that we are constantly used as inspiration porn for the able-bodied, however Claire was an inspiration to me. When I think about the person I want to become, so many qualities that Claire had come to mind. I hope one day I can be as care-free as Claire was. She was a giving person who started Claire’s Place Foundation, an organization that helps support families living with Cystic Fibrosis financially. In her death, Claire continued to be a self-less person by becoming a organ donor.

My life has been touched by Claire Wineland, and I’ve never even met her or had any conversations with her. I cannot imagine the terrible loss her family and friends must be feeling at this moment. Claire will forever be missed by the chronic illness community, and we will forever be indebted to her for her advocacy and generosity over the years.

Moving Into My First College Apartment

On Friday I took the leap and moved into my apartment!

We had brought almost all of my stuff on the 18th, so I packed up my truck with the few things I had left and drove myself to my University. I’m not gonna lie, driving away from my parents and home was so hard. Luckily for me the drive is about 45 minutes to an hour, so it wasn’t too bad. I know I’m really close, but right now it feels super far.

I’ve barely been here and I miss home so much. Since I’m a transfer student there wasn’t all the events that new freshman have. They did have a few, but I would have had to leave on Monday to be a part of them, and I wasn’t ready to leave then. I’m spent most of my time putting together the last few pieces of my apartment, but I’m feeling super lonely. I know this will get better and is just a normal part of leaving, but boy does it hurt. I’m so close with my parents, especially because of all my health issues. I’ve been so isolated for the past six plus years that I truly have no one else besides my family. Dealing with not having friends is tough, but this is the most lonely I’ve ever felt.

For now I’m just trying to keep myself busy. My problem is that I can only exert myself so much before I feel sick and have to lay down, but when I lay down I’m less distracted from my sadness. I’ve been forcing myself to keep doing stuff even when I feel bad because at least I feel a little more distracted from begin sad. I’m sure when classes start this will get better though since I’ll have a lot more to occupy my time with. Class starts Monday so logically I know it’s really soon and things will feel better then, but in this moment time is passing incredibly slowly.

I have a roommate but we’ve barely been spoken to one another. I’m hoping we can get to know each other a little more this weekend, and that things improve on that end.

I know I made the right decision to leave home and try to attend college at a University, but home sickness makes you question everything. Seriously, no one tells you it will be this hard.  Let me know if you have any tips for leaving home for the first time!

 

Another Day, Another Diagnosis

I feel like I start every post about my health off with, “a lot has happened in the past month,” but a lot of things keep happening!

The clinical trial I was in was approved for open label, which means I was able to take the medication and know that I was getting it, and not the placebo. Unfortunately, it made me violently ill and caused horrific pain, so I wasn’t able to be on it for very long. On the upside, I felt a lot better once I stopped the medication! I also stopped taking Corlanor since it wasn’t helping my POTS symptoms at all. Right now I’m trying to find a good cardiologist or autonomic neurologist to manage my POTS, but it is much harder than you’d think.

After being diagnosed with fibromyalgia, I felt as if it wasn’t quite the right diagnosis. Most of the suggestions for fibro patients were not doing anything to help me, and I had a lot of weird symptoms that couldn’t be explained by fibro. My GP referred me to a geneticist because she wanted me to have an evaluation for Ehlers-Danlos Syndrome. He was very knowledgable about EDS and spent most of his career focusing on it. In the end he diagnosed me with EDS and suspects hyper-mobility type, but we’re still going to do the genetic testing to rule out classical and vascular, although it’s unlikely I have either one of those. Honestly, I’m very disappointed to have another diagnosis but I wasn’t surprised in the slightest. At least we can be confident that it’s the right diagnosis this time! I’m currently looking into what doctors are good for EDS in my area, and I’m also looking for a good physical therapist to hopefully help control some of the pain.

… and because for some reason I seem to like getting multiple diagnosis’s close together, I saw an allergist that the geneticist recommended, and she diagnosed me with MCAS. If you’ve been reading my blog for a while then you know I’ve had doctors go back and forth on whether or not I have MCAS for quite a long time. I’m already on a lot of antihistamines and cromolyn sodium which controls it fairly well. I’m definitely not a severe case, but without antihistamines things are pretty miserable. She wants me to start Xolair shots in hopes it will improve my MCAS symptoms enough to come off of all or most of the antihistamines I’m taking. I’ve heard mixed things about Xolair, but I’m willing to try it in order to attempt to take less medications and have less allergic reactions.

I’m hoping this will be the end of the diagnosis’s if not forever, at least for a long time. Having a diagnosis for any of my health issues still feels surreal to me after being undiagnosed for so long. I feel like I’m being directed to better doctors to manage my care, which seems really promising that things might improve soon. Now that we have all the diagnosis’s we just need to figure out what to do to actually treat what’s going on!

Plan Z : A Poem

Plan Z

 

Plans have never worked for me

All the color-coded lists are only figments of control

These pens in my hand have no power

 

Balled up paper on the floor tells my life story

Constantly rewritten

Red pen marks everywhere

 

Mid-Sentence stops because the plan didn’t even make it that far

Before whiteout was needed

Because once again things have changed

 

My hand hurts from re-writing

And each edit makes me feel like I’m losing another part of myself

Plan C felt doable

But that was so long ago

 

Plan Z is less promising

I’ve learned to start writing in pencil

Leaving the page blank feels like giving up

But I’m tired of erasing

 

 

Gastroparesis Awareness Month

August is Gastroparesis Awareness Month!

I was diagnosed with Gastroparesis back in March of this year when I went to the Mayo Clinic. It took me six years and two minsdiagnosises to receive this diagnosis. Gastroparesis is a rare disorder of the stomach causing delayed gastric emptying. The symptoms associated with it are:

  • Nausea / Vomiting
  • Abdominal Pain
  • Reflux
  • Bloating and Distention
  • Early Satiety
  • Lack of Appetite

 

“Gastroparesis demonstrates a gender bias affecting more women than men. Approximately 80% of idiopathic cases are women. Idiopathic gastroparesis may be linked to an as yet-to-be-elucidated enteric autoimmune disease. The prevalence of delayed gastric emptying in Type 1 diabetics has been reported to be 50% and in type 2 diabetics, reports range from 30% to 50%” (NORD)

gastroparesis

There are very few treatment options available for people with gastroparesis, and none of them are very good. Many companies are working on clinical trials, I was even a part of one! There is still a lot of unknown about gastroparesis, especially idiopathic gastroparesis, so creating treatments is incredibly difficult as is actually treating those who have it.

My hope is that we are able to find better treatment options in the future to help all of us who have gastroparesis have a better quality of life.

 

P.S. Is the color for gastroparesis awareness month green because we’re nauseous all the time and puke a lot? If not, that was a major oversight lol 🙂

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!