I Had Surgery, or Did I?

On June 6th I had an exploratory laparoscopy to look for endometriosis, or did I?

In true Alyssa fashion, things did not go as planned. Preparing for the surgery, everything went fine. I had some anxiety after my pre-op visit with my OB/GYN who was doing the surgery, but then I felt okay and had very little anxiety on the actual surgery day. The day of, things also went well before I went into surgery. They got my IV in with one stick, everyone was really nice, and they even started on time (seriously, when does that happen?). However, I woke up to news I was not expecting to hear.

Essentially, my surgeon tried for an hour and a half (the longest amount of time they are allowed to keep you under at the surgery center I was at) to get into my abdominal cavity. She received so much resistance that she was not able to get in at all. They even called in another surgeon to try, and he couldn’t get in either. Confused? Don’t worry I am too. They told me that I either have so much scar tissue and adhesions from when I got my gallbladder and appendix taken out that they couldn’t push through it, or there is so much endometriosis that they couldn’t get through it. The surgeons weren’t able to see anything at all since they couldn’t get in.

I’m going to have to have surgery again unfortunately. I am being referred to a gynecological oncologist to do the next surgery. I definitely don’t have cancer, oncologists are just better surgeons and work with the whole abdomen and not just the pelvis like OBGYN’s do. As much as I do not want to have another surgery, I am really hoping that whatever it is that kept my surgeon from being able to get into my abdomen, can be removed and that it will help my pain. My surgeon said she’s never had to abort an exploratory laparoscopy and has never not been able to get into someone’s abdominal cavity. My body is so incredibly weird, and I guess there’s a first time for everything. My best guess is that EDS is playing some role in this, but I guess I’ll find out what’s going on soon enough.

Even though this sucks, I think it’s kinda funny. Imagining the surgeon trying to get into my abdomen, only to receive so much push back that she couldn’t is pretty funny to me. I wish I could have seen the look on her face. I told my parents I’m so stubborn I wouldn’t even let someone into my abdomen. This is one of those things that you just have to laugh at or else you’ll be upset. I hope you all are doing well!

*If anyone has ever experienced something like this (especially if you have Ehlers-Danlos Syndrome) please let me know!*

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Rest In Peace Chronically Jaquie

Today, April 29th, 2019 Jaquie Beckwith, also known as Chronically Jaquie on social media, passed away.

I am honestly at a loss for words regarding her passing. I’ve watched her videos for a few years now, starting when my health was at an all time low. I was in a place where I only left my house for doctors appointments, and felt incredibly lonely because of it . Watching her daily vlogs helped me feel less alone in really trying times. She had many of the same health problems I do, and so it was nice to be able to feel like someone else was going through the same thing. Although Ehlers-Danlos Syndrome itself is not deadly, this is a very real wake up call that deadly complications can arise. You truly never know what’s going to happen with these chronic illnesses.

My heart goes out to her family and friends, and all the members of the chronic illness community that feel affected by this. It is hard to grieve the loss of a member of this community, especially one as active as Jaquie. I can’t imagine what her family is going through, especially her husband Judd. I pray they can find some peace during this difficult time. Thank you Jaquie for your advocacy and activism. You will forever be missed in our community.

 

( I have been gone from this blog for quite a while, and plan on coming back after this semester of school ends. I just couldn’t not say something about her passing. I hope you are all doing well, and are taking care of yourselves.)

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.

 

 

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.

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!

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.

cfs

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!