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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College Life Update

I’m sorry I was a little MIA in September, it turns out college takes up a lot of your time!

In my last update I had just moved to college and was having a rough time adjusting, but I’m happy to say I’m at the end of my seventh week of school and things have greatly improved home-sickness wise. Being a biology major is a lot of work and the classes can be pretty difficult, but I’m really enjoying my biology class. Right now the only thing I’m struggling with is chemistry, which is probably because I didn’t take it in high school, so I’m learning everything for the first time. My first chem exam didn’t go great, which is disappointing, but I think the next one will go better now that I know what to expect.

I’ve tried out a couple different clubs, but I’m still trying to find my people. Being a transfer makes it a lot harder to make friends, since you aren’t in a dorm where everyone is desperate to find friends like freshmen are. I’m hoping that it’s just going to take some time, and as I meet more people through these clubs, I’ll find people to hang out with.

On a health note, things have not been easy. When I started classes I wasn’t feeling well, but I wouldn’t say I was doing awful. It’s currently the seventh week of school (out of 16) and it’s become increasingly more difficult. My health tends to follow a pattern of doing it’s best around late-august and then declining until it’s worst which is usually mid-december until sometime in the summer. This isn’t set in stone, it has strayed and done something different before, but this is a very common pattern for me. It’s frustrating and discouraging to see my body continuing to do this, but I want to be at college and be successful in my classes so bad that I’m pushing so hard to stay here and do well.

Pushing yourself when you’re sick is a damned-if-you-do damed-if-you-don’t kind of situation. I often push myself too hard for too long and end up losing all progress I’ve made and go back to not being able to function at all. However, if you don’t push yourself you won’t succeed in the first place. I’ve been forcing my body to do so much that it has repeatedly told me it can’t handle that I’m afraid the current repercussions are only the beginning. For now, I’m going to keep trying my best and doing as much as possible while attempting to think positively.

I started seeing a new GI since my last GI, who I loved so much, gave me the “I don’t know what to do anymore” speech. I didn’t love the new GI right away, I felt like she didn’t really listen when I was speaking and she made me try a medication that I explicitly told her not only didn’t work for me in the past, but also made things worse.  Surprise, surprise it made me horribly ill again. My GI system is beyond messed up and the list of foods I’m able to eat in dwindling down rapidly. I have my second appointment with her at the end of this month, so I’m hoping we can come up with a better plan then.

I also started Xolair shots for the mast cell issues, and received my second shot earlier this week. So far I have yet to see a difference in my symptoms but this medication can be one that needs to build up in your system before it will work, so I’m hoping to see improvement after the third shot. The allergist wants me to cut down on the amount of antihistamines I take, but because I haven’t seen improvement I feel like I’m going to be miserable without them. I’m going to try to cut them down this weekend, so if things go bad then at least I won’t have to worry about going to class while being so itchy and rashy.

I’m also supposed to get my genetic testing results back at the end of this month to see if I really do have hEDS or if I have another type of EDS. I’m slightly nervous for the results, but overall I’m pretty sure I have hEDS and would be surprised if the results said something different. These past two months have been quite the whirlwind, but I feel lucky to even be experiencing the things I’m experiencing.

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.

 

 

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!

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.

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