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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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!

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.

Shit My Ableist Family Members Say: Chronically Misunderstood

After spending Thanksgiving with my extended family, I realized about 95% of my conversations with them included a lot of ableism and me gritting my teeth. There’s some of things they’ve said to me recently:

  1. “I’m so glad you’re better!!!”

My Grandmother told me how happy she was that I was all better at Thanksgiving, when I literally had an endoscopy the day before. About 80% of the time I was at her house I felt like I was being stabbed in the stomach, but my face told another story. Just because I’m good at pretending to be “fine” for your sake, doesn’t mean I’m not screaming in pain.

2. “You’ve learned some great life lessons though”

Yes, I became sick as a child so I could learn a few lessons. One of them is how absolutely insensitive that comment is. Another, is how to restrain myself form decking you in the face.

3. “Do you have a real life now?” or “Are you truly living now?”

Apparently my life wasn’t worth living when I laid in bed sick for months, but dragging my aching body around to school is a meaningful and “real” life.

4. “Sometimes God just answers prayers slowly”

While I am a Christian and believe in God, the idea that one day God is going to magically cure me is ridiculous. Some problems don’t have resolutions, and that expectation leads to devastation.

5. “People who apply for disability are just lazy”

If I wasn’t a minor I definitely would have been on disability, and there’s nothing wrong with that. Also, wow just wow.

6. “I just don’t know how it’s possible that you’re STILL sick!”

Touche

…but it’s called “chronic” illness for a reason.

 

These are just a few of my favorite gems! There’s many, many more and a part two may have to happen soon.

What is the most ridiculous thing people say to you about your chronic illness(es) / disabilities? I’m sure you all have some great stories!

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?

Why are you here?: Chronically Misunderstood

This one is going to be a bit of a back story, but I’ll make it quick. At the time I in high school and it was my freshman year. The school I went to really didn’t like that I was absent a lot and made me jump through a lot of hoops in order to “make up my time.” This had happened for the past two years I was in middle school as well, but their obsession with me being in school makes this story funny to me. Also at this time doctors thought I had abdominal migraines also known as cyclical vomiting syndrome.

I walked into school late and went to check in  before heading to class. Normally I would go to my house office, but the secretary at the front desk stopped me and asked me my name. When I told her who I was she looked me up in the computer system which I thought was odd. I had come into school late a lot and no one ever questioned me. Normally I just went to the office, got a note, and was on my way.

The lady started to look really confused and said, “you aren’t supposed to be here.” I didn’t know what to say to that. Here I am at school, specifically at a school that get’s very angry when I’m absent yet this lady is telling me I’m not supposed to be here? “You’ve been counted absent for the whole day,” she told me. I responded with, “I don’t know why, I didn’t tell anyone I was going to be gone all day.”

She furiously tapped away on the computer and I just stood there throughly confused. She walked away into the main office and came back looking relieved. She exclaims, rather loudly I might add, ” OH YOU’RE STOMACH MIGRAINE GIRL!” I guess I had developed a reputation. “Yeah…” I replied trying not to laugh. For some reason being stomach migraine girl made everything okay and she let me go on my way. I’m still honestly not sure what that situation was all about, but it was funny nonetheless.

Tell me a funny or weird story about your high school experience!

Lots of Love,

Alyssa

Daith Piercing for Migraines?

Whether you have migraines or not you may have seen posts that circulate the internet about daith piercings being cures for migraines. The daith is the inner most piece of cartilage on your ear and it’s supposed to act as an acupressure point.

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As a skeptical person I’m not really buying this as a migraine cure. I get the idea, but I don’t really think it will work. With that being said, my mom has had three co-workers get this done and all of them have had less migraines. I could try to come up for explanations for why they got better after getting the piercing, but I’m not going to. It really worked for them and so I’m going to try it… with no expectations of course.

The worst thing that could happen is that it doesn’t work. This isn’t invasive and I really like the look of them so I would probably keep the piercing either way. The place her co-workers went specializes in this piercing for migraines and is reasonably priced, so I’m going to go there as well. I’m not a huge fan of a lot piercings but I think one or two on the ear (that aren’t the typical lobe) can look cool. Some people look really good with other piercings like their nose or septum, I just don’t think I would be one of this people.  I’ve wanted my helix pierced for around two years now but I’ve been vetoed by my parents.

This place doesn’t do appointments, only walk-ins but I’m planning on going on Saturday. You have to get one side done, wait a month for it to heal some, and then get the other side done if it doesn’t completely relieve your migraines or you get them on both sides. I plan to make an update post once I get it and then again after I’ve had them both for a few months.

Have you ever tried any “internet cures” for your chronic illness? Did they work?

Lots of Love,

Alyssa