Grad School & Chronic Illness/Pain

As I enter the final days before starting my last semester of graduate school, I can’t help but reflect on all the obstacles I’ve faced over the past two years. By the time I graduate in May, I will have undergone three heart surgeries, made multiple trips to the ER, survived a pulmonary embolism, received a sleep apnea diagnosis, and worked full time, all while completing this one program. That was never the path I imagined for myself back in the fall of 2024 when I started. When I applied earlier that spring, I felt relatively normal. My arrhythmias hadn’t yet returned with the intensity that would later upend my life.

Going to graduate school while working full time and living with chronic illness is the hardest thing I’ve ever done. I honestly don’t know how I’ve made it to this point. There have been countless tears and more moments than I’d like to admit where I wanted to quit, which is very unlike me. Last summer, I almost took a break because I couldn’t fathom having zero downtime to let my body heal. Instead, I reached out to my university’s disability center, advocated for myself, and asked for accommodations. That process wasn’t easy. Years of medical trauma had conditioned me to believe I wouldn’t be believed or taken seriously. But the gentleman I spoke with was incredibly supportive and provided more than enough accommodations to help me through my final semesters. I’m so glad I kept going because now I’m four, hopefully short, months away from my degree and never having to go to school again.

I often find myself daydreaming about what life will look like once I graduate. I will have had, and hopefully recovered from, my third heart surgery. I’ll hopefully have my sleep figured out. I’ll be able to move my body again and have the time and energy to cook nourishing meals for myself. I try not to cling to false hope, but after everything the past two years have put me through, that vision feels incredibly exciting.

The people around me are often baffled that I’ve made it this far. They tell me they would’ve given up a long time ago. While these heart conditions are relatively new for me, chronic illness and pain are not. I’ve spent the last decade learning how to live in a body that makes everyday life significantly harder. In high school, my parents rarely let me miss school because of pain because they didn’t want it to become a habit. At the time, I was furious. Now, I’m deeply grateful. That expectation instilled a resilience in me that I still carry today. That same intrinsic drive and ambition led me to graduate high school with distinction, college summa cum laude and top of my major, and now graduate school with a 4.0 GPA. I don’t share that to brag, but because I’m proud of myself for the millions of moments I had to overcome to get here.

From the outside, it probably looks like school comes easily to me. People see someone who doesn’t procrastinate and seems to stay on top of everything. What they don’t see is how much effort it takes just to complete a single assignment. I don’t procrastinate because I can’t afford to. I don’t know if tomorrow I’ll be bedridden or unable to function, so when I feel well enough, I work ahead, sometimes weeks in advance. I live my life one day at a time. Living in pain is not something anyone should have to endure. It destroys relationships, ambitions, and self-confidence. It has made me doubt myself more times than I can count. It makes even the simplest tasks feel impossible, and that’s not an exaggeration. But I refuse to let it win.

I’m not here to say that pain is mind over matter, because it’s not, and that narrative is deeply invalidating to those of us who live with chronic pain. What I am here to say is that we can do hard things despite our pain, and we deserve recognition for that. School is already hard enough without carrying a body that actively works against you. I think those of us with chronic illness develop an extra layer of ambition because without it, it would be far too easy to stay in bed forever, even though that rest is oftentimes necessary. It isn’t fair, and that reality still makes me angry. But this is the only life I get, and I refuse to let pain I didn’t choose or cause be the thing that stops me from becoming who I know I’m capable of being.

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MY SIX YEAR ENDOVERSARY

 I say this every year, but I can't believe today marks six years since I was diagnosed with endometriosis! It feels like yesterday, but a lifetime ago at the same time. I was getting a little teary-eyed this morning thinking about how far I've come during these last six years. I went from being in debilitating pain and not being able to get out of bed as a 14-year-old freshman in high school to a 20-year-old college junior who is chasing her dreams. My 14-year-old self pre-diagnosis didn't see the light at the end of the tunnel. I thought that I would always be in intense pain because no medical professional would believe my pain. Fast forward to the present day, I am still singing, have a crazy busy schedule with all my clubs and activities, and I'm doing an internship full-time that I love. I have found a way to manage my pain the best I can through a combination of medication and pelvic floor physical therapy. A lot of people in the chronic illness world like to push either just medication or just holistic forms of treatment, but I believe every single body is different. It's often a combination of the two that work together to help people. 

For years I was only using medication to manage my pain which has been so helpful, but re-starting pelvic floor physical therapy has made all the difference for me. I would say this past year has been the best for me pain-wise. My bad days are far less frequent and I have become very good at pinpointing what is causing my pain and making the proper changes to fix it. Each year I try to learn more and more about my body and why it works the way it does. Able-bodied people don't have to worry about every piece of food they put in their body, every step they take so they don't throw their body out of alignment, or worry about having to cancel plans because they're in so much pain. And yes, that is very frustrating at points, but I'm willing to do all those things to help my body be the best it can be. 

I wanted to share a little update on my health recently. I've been a little frustrated because I have been dealing with incontinence over the last week or so which is something I've never experienced before. It's hard having no control over what your body does, but I have faith that this is just a phase and my body will get back to its normal soon. Other than that, my endo pain hasn't been around as much which is so nice. I'm still dealing with my injured tailbone, but the pain is so much better than it was before. I even met a new friend with endometriosis here at school and we've started talking! It's so nice to have someone who knows exactly what I'm going through in my everyday life!

I'm so proud of myself and what my body has been able to do for me over the last six years. There are many times that I get angry at my body because I feel like it's failing me, but I try to remind myself that it is first and foremost my home, it has stuck with me for twenty years, and it's not going anywhere any time soon. Thank you for coming on this journey with me over the last six years and I look forward to sharing more of my journey with you as time goes on! 

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Prioritizing Friends in College (while having a chronic illness)

 I'm happy to report to you that since the last time we spoke, I am doing much better! I have been back on the daily grind of doing my internship, leading my clubs, singing, and spending time with friends. As my college experience is wrapping up shortly (I have less than 3 semesters left, so crazy!), I have made sure I am prioritizing my friendships here more than I ever have. Whether it's sacrificing a few hours of sleep or simply doing homework silently, but in the presence of each other, it's so important to create those bonds. These are the people that always support me when I'm not feeling well and have fun with me when I am. They often have to drag me out of my bed, but I'm always happy they do. Some of my friends and I are even going on a trip in a few weeks which is something I never would have thought of doing a few years ago when my pain was really bad. I want to share some of the things I try to remind myself of when I'm feeling guilty about having fun (even though it's ALWAYS okay to have fun:)

1. It's okay to lose a few hours of sleep if you're busy having fun and making memories with your friends!
2. I may not be feeling my best right now, but I know I'll be having fun once I'm with my friends!
3. College is the time in your life to be prioritizing friendships before you're all off in different places!
4. It's okay to count spending time together as just being in the same room- you don't need to always be doing something crazy and high energy!
5. It's OKAY to say yes more to things that aren't school and work-related!!!!!! (I'm definitely still learning this one)

All of these things are easier said than done and it's taken me three years of college to finally let myself have fun. I don't know if it's just me, but I always feel guilty about doing fun things if it's not productive. However, hanging out with your friends is productive and an amazing use of your time because you'll have those bonds and memories to last a lifetime! 

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I'M IMMUNOCOMPROMISED AND GOT COVID

    After only one week back at college for the spring semester, I tested positive for covid after dodging it for almost two years. This time last week was pretty scary. I learned I was a close contact last Saturday after simply watching a movie in my friend's dorm room. I didn't think much of it because throughout the night I wasn't physically close to this person at all. It wasn't until the following day I started to panic a little bit. So, I drove to CVS and picked up as many rapid tests as I could find, and took one right away. It was negative. A sigh of relief washed over me. However, about thirty minutes later, one of my closest friends tested positive and I got scared. I had been with this friend every day over that last week, so there was no way I avoided the virus this time. After finding out my friend tested positive and making sure they were okay, I sat at church praying that I didn't have covid. Yes, I knew I would probably be fine because I am fully vaccinated and boosted as well as constantly taking every precaution to protect myself, but there is still an unknown. I had to leave choir practice because I was on the verge of a panic attack. Luckily, another friend followed me out and attempted to calm me down. With his help, I started to come to terms with the fact that I could possibly have covid. 

    This may seem a bit dramatic to you, but this is the reality of being immunocompromised during a pandemic. Because of my endometriosis and asthma, my immune system and lungs are not that of a perfectly healthy person. I didn't know how my body was going to react to this new attack. The very first thing I did the following morning was go right to my school's testing center and got a PCR test. From then on, the rest of the day was a waiting game. I kept myself busy by doing my internship and mentally preparing myself for the news I didn't want to hear. Throughout the day, I started developing cold symptoms. This is not completely abnormal for me as I have bad allergies and more often than not have a stuffy nose and cough. However, this was not a good sign since I was a close contact with two different people in the span of twenty-four hours. I decided to attend my class on zoom that night because at this point, I had full-fledged symptoms and I was not feeling good. Around 9pm that night, my friends who had also tested in the morning started getting their negative test results back. I waited and waited but never received mine. I finally went to bed around 11pm with the gut feeling that I had tested positive. I woke up several times during the night and checked my phone hoping to see an email about testing negative, but that never came. Around 8am the next morning, I received the dreaded email: "the results for your covid-19 test have come back positive."

    I had little reaction at this point because 1) I was still half asleep and 2) I had prepped myself for this news. I just knew I needed to pack up my things and go home. I really wasn't feeling well at this point, so my brain wasn't working at top speed. I shoved a bunch of things into a bag and went to my car- double-masked the whole way. I knew I had to be forgetting something, but I went through the mental checklist of things most important to me: medicine and sound machine, check! Once I got in my car, I saw the negative rapid test I had taken the night before sitting there and mocking me. I hadn't eaten anything at this point and was still pretty tired, so I was attempting to hype myself up for the 1.5-hour drive home. Once I got some food in my system and my podcast playing, I was good to go. Luckily, I made it home with no problems. 

    When I arrived at my house, I was greeted with N95 masks and surgical gloves on the counter. I put a mask on and went straight down to my room where I've been ever since. At that point, I was having bad cold symptoms- stuffy nose, congestion, cough, dry throat- as well as trouble breathing and bad fatigue. I quickly took a shower while the rest of my family was at school and work, then immediately went to sleep. The first day was a little rough being by myself because I was so used to being super social with all my friends at school, but I quickly got into a routine of prioritizing myself and making sure I was doing everything I could to get better quickly. Those initial cold symptoms lasted about three days. Now, I am just experiencing a stuffy nose and fatigue. However, this morning I woke up with extreme dizziness and almost wet the bed not being able to stand up to walk to the bathroom. Actually, writing this blog is the first time I've sat up in bed all day because the dizziness is still very much there.     

    This whole week I have been so thankful that I am fully vaccinated and boosted. I've had quite of bit of trouble with my breathing even with all my vaccines, so I'm glad I didn't get covid before vaccines were available. While I have felt pretty sick all week, I am also so thankful that my symptoms haven't been worse since that was a very real possibility with me being immunocompromised. I am on the mend now and hoping to be back at school soon. Please be mindful of your immunocompromised loved ones at this time because even if you aren't scared about getting covid, they probably are. So let's be kind and respectful toward everyone and do what we can to make everyone safe!

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End of Semester Update!

 I'm back everyone and I apologize for my absence this past semester! I think it has been a crazy time for most people, especially those who are back to school and work after being at home for so long. Since my college required COVID vaccines, masks indoors, and weekly tests, we were able to get mostly back to normal, which means I was very busy. I was taking some hard classes, I was a student leader in four different groups, and I continued my summer internship into the fall. I'm not complaining though, because like I've said before, I actually really enjoy being busy because it takes my mind off of my endometriosis and other health problems. Now that COVID is ramping up again with the new variant, I'm very happy to be safe at home, fully vaccinated, and boosted. 

A lot of exciting things happened for me this semester! The most exciting is that I was accepted into an internship program at my school that is going to allow me to intern full-time in Boston during the Spring semester for school credit rather than taking classes. I always wanted to do this internship program in Washington D.C. as I am a political science major, but when it came time to apply, I realized that I haven't had a normal year of college yet and I don't want to leave campus for a whole semester. The Boston program allows me to live on campus and still participate in all my extracurricular activities while getting to commute into Boston during the day and get that real-world experience. After I was accepted into that program, I had to apply for internships. This process takes a lot of time from searching to applying to interviewing. I was lucky enough to get a few offers and I accepted an internship that I'm super excited about and I think is going to give me the clarity I need moving forward with my career. 

I did work full-time during the summer, but that work was mostly remote. Commuting into a big city every day is going to be a whole new experience and I will definitely share my experience here will all of you. I am definitely nervous about how this internship is going to affect my endometriosis pain. Anxious nerves and stress often cause flare-ups of my pain. Over the summer if that happened, I could just take a quick break to lay in my bed, however, I won't be able to do that this time around. Although don't get me wrong, I am very happy and grateful that this experience will be in-person after experiencing the pandemic for almost two years. I'm sure a lot of you reading this have full-time and in-person jobs, so I'm very curious, how do you handle your pain? 

I have been lucky this semester that my endometriosis pain has been mostly manageable! I had a few flare-ups here and there, but they didn't last very long. The combination of medication and pelvic floor physical therapy has really worked for me and I'm so thankful! A lot of chronically ill people are strong proponents of either full-on western medicine or other less common routes. I think it's different for every person because each body is different, but I've experienced the best results when both methods are combined. What works the best for you? What I've still been struggling the most with is my tailbone pain. It's been about 1.5 years since it's started, but I'm happy to report it is getting better with the help of pelvic floor physical therapy! Hopefully being able to go to PT consistently over the break will be the push my tailbone needs to fully heal. 

I feel like I've been rambling a lot, so I'm going to end this post here. Now that I'm going to be on winter break for about a month, I'm going to be posting on here more and I've been posting on my Instagram pretty frequently (@endoisnottheendblog). I hope you all are happy and healthy and are enjoying the holiday season with loved ones!

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ORGANIZATIONAL TIPS!

 This doesn't have much to do with chronic illness, but I want to share my organizational tips with you today. However, these methods help me to have everything prepared in case I'm having a bad pain day or I'm just plain tired (which is a lot of the time). Let's get started:

1. GET A TO DO LIST: This will literally save your life. I don't know how I got anything done before I had one. 
2. SET OUT EVERYTHING THE NIGHT BEFORE: I try to get my outfits set out and my backpack packed up the night before in case I need to take it slow in the morning.
3. USE A PLANNER: This will be your best friend if you're busy like me. Especially if you're a student, it's the best have all your assignments and activities in one place. 
4. PLAN OUT TIME IN THE DAY TO DO SELF CARE: For me, this means setting aside time to do all the activities from my pelvic floor physical therapy because I know they always help me feel better. It can be different for every person though!
5. CREATE FOLDERS IN YOUR EMAIL: This is something I didn't think I needed to do for the longest time, but once I did, it made finding old emails soooo much easier.
6. CREATE FOLDERS IN YOUR FILES: Similarly, this is so helpful and I have folders for literally the smallest things. When you're constantly turning in assignments, it's so helpful. 
7. ORGANIZE YOUR DESK: Having an organized workplace really does make you more productive and efficient.
8. HAVE A CLEAN ROOM: I know this sounds weird, but especially if you're working in the same place as you sleep, I find it so important to my productivity to have a clean room and made bed. If I don't, it just stresses me out and I'm not as focused on my work. 

I hope you found these tips helpful because they are really have gotten me through college!

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Back to School with a Chronic Illness- Tips

 It's that time of year again when all of us students are getting in the swing of school. I know I certainly am. I know better than most people how hard going back to school with a chronic illness is, so today I wanted to share the tips I've developed over the last five or so years of going back to school with a chronic illness.

On good days, try to get a lot of work done so you have more time to relax on bad days- I always try to get ahead on good days because I know there's eventually going to be a bad day where I'm not going to want to do any schoolwork 

See if you can get accommodations through your school- especially if you're in college, I've found this to be incredibly helpful with living and diet accommodations

Dress as comfortable as possible to make it through class- no one's really paying attention to you that much to care what you're wearing (and if they are they need to get a life)

Always have pain relievers with you on the go- whether it's ibuprofen, icey hot packs, or a Tens Unit, I suggest keeping it in your backpack with you at all times in case you start having a flare-up

Let your teachers/professors know what's going on if need be- I have found all my teachers/professors to be extremely understanding when I'm having a hard time (but they can't give you any help if you don't ask)

Get involved in clubs and activities- this has honestly been my saving grace since I was diagnosed with endo! Like I've said previously, being busy is a pain management strategy for me because I don't have a lot of time to think about how I'm in pain. When I don't have anything to do is when I feel the worst.

But also know your limits- don't completely overschedule yourself so that you never have time to relax because that won't be helpful to your mental or physical health 

Lastly, your health comes first- If you really can't make it to class one day because your pain is too bad, then don't go because you could risk making everything worse. Luckily online class has become very popular, so try and see if that's an option, or just get notes from a classmate. It's really not the end of the world (just don't get into a habit of missing constantly)

I hope all of you who are in school are having a great start to the school year and it has been pain-free so far! If you ever need any advice, remember my DMs are always open :)

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WHAT IS CUPPING THERAPY?

 

Many of you have heard me talk about cupping therapy (or cupping) here and on my Instagram, but I've learned that most people don't know what it is. I was first introduced to cupping when Michael Phelps made it popular by putting his circular bruises on display at the Olympics. 

Cupping is a form of alternative medicine that has become popular over the last few years. I started using this method in pelvic floor physical therapy over the winter to help with inflammation and pain management in my back and tailbone. Still, people use it for many different reasons. So you can get a better understanding of cupping, and why it's helpful, I'm going to bring you through the basics.

WHAT IS CUPPING THERAPY?

Cupping therapy is an ancient form of alternative medicine that originated in China.

HOW DOES CUPPING WORK?

A therapist will put special cups on specified spots and create a suction to the skin and leave them there for however long they deem necessary. 

WHY DO PEOPLE USE CUPPING THERAPY?

There are many different reasons why people use cupping therapy, including:

• Pain
• Inflammation
• Blood flow
• Relaxation and well-being
• Muscle tightness

It has been compared to a deep tissue massage.

DOES IT HURT?

I decided to include this question because looking at pictures of cupping can be pretty offputting, so I wanted to share my experience. There are many different suction levels, so you must communicate with your therapist about what is too much, too little, and just right suction for you. However, if you are really trying to get the full effects of the cups, you can put them on a little tighter, and it will hurt at first, but after 30-60 seconds, the pain will go away. I haven't gotten up to the level of bruising you see on Michael Phelps; in fact, I've only ever had bruising one time because everybody is different and can only tolerate so much. But the goal is to add a little more suction each time so you can make progress.

WHAT DOES RESEARCH SHOW?

While there needs to be more and better research done on cupping, it has been known to help those with:

• Blood disorders 
• Rheumatic diseases
• Fertility
• Skin problems 
• High blood pressure
• Migraines
• Anxiety and depression
• Bronchial congestion
• Varicose veins 
• Overall muscle relaxation

Cupping therapy definitely isn't for everybody, but if you are looking for another method of pain management, I certainly recommend it! I always leave my appointments feeling so relaxed and in a lot less pain. But remember to always drink a lot of water after because it's sucking a lot of toxins out of your body. 

Source: https://www.webmd.com/balance/guide/cupping-therapy

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WORKING 9-5 WITH CHRONIC PAIN

 

Working 9 to 5 is something brand new to me that I started last week. I'm working two jobs this summer so obviously, I've had to learn how to manage this. Working 9 to 5 for the first time is challenging for everyone, but then you add in having to deal with chronic pain and it makes adjusting to this new schedule a lot harder. I want to preface this by saying that I love both of my jobs and I can't wait for the rest of the summer because I'm so lucky to be in both positions! However, sitting at my desk for hours on end isn't the best for my pelvic floor region. 

My whole life up to this point I've imagined myself as having a desk/office job in the future because due to my chronic pain, being on the move isn't my favorite thing. Now that I'm sitting at a desk in my bedroom for many hours a day, I might need to reevaluate that vision for myself. I think my ideal situation is where I can sit when I want to and move around when I want to because my body needs both of those things to keep everything in check. Although sitting at a desk isn't the most comfortable thing in the world, I've discovered a few things that have helped me make the best of the situation. 

The first is a laptop stand. This allows you to prop up your laptop so it's at eye level and you aren't breaking your back hunching over it all day. I got mine at the beginning of last semester and I think it's one of my favorite purchases ever. I'm still sitting in front of the computer for the same amount of time, but my back and neck feel SO much better. 

The second tool that has been so incredibly helpful to me for years is blue light glasses. These block out the harmful blue light coming from your computer or other electronic devices and makes having to stare at them all day way easier on the eyes. I used to get headaches all the time from blue light, but I don't anymore because of these glasses!

The third thing is a seat cushion. As I've mentioned here a few times, I've had an injured tailbone for about a year now, so seat cushions are an essential part of my everyday life. I use one on my desk chair at home and school, as well as one in my car. Even if you don't have tailbone or back issues, a seat cushion can still be really helpful for all-around comfort. 

And finally, the items I have purchased most recently, a mouse and mousepad. Not just any mousepad though, one with wrist support so you don't do any damage while using your mouse all day. This is the first time I've actually used a mouse with a laptop, but it's been so helpful because it allows me to sit up straight in my chair and not have to hunch over the mousepad built into my laptop. 

I'm really curious, so let me know on here or over on my Instagram, but how do you work while also dealing with chronic pain? I'm open to any and all suggestions!

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WHAT IS IBS?

Today I'm going to spread some light on another disease that often comes hand-in-hand with endometriosis. Patients are often misdiagnosed with irritable bowel syndrome, or IBS, when they actually have endometriosis because they have similar symptoms. However, this is another factor that contributes to the prolonging of finally getting an endometriosis diagnosis. So, what is IBS?

Definition:

"Irritable bowel syndrome (IBS) is a common disorder that affects the large intestine. Signs and symptoms include cramping, abdominal pain, bloating, gas, and diarrhea or constipation, or both. IBS is a chronic condition that you'll need to manage long-term."

Symptoms:

• Abdominal pain
• Cramping 
• Bloating
• Increased gas
• Changes in appearance to bowel movement
• Changes in how often one has a bowel movement 
• Weight loss diarrhea

Cause:

• Muscle contractions in the intestine 
• Abnormalities to the nerves that help with digestion 
• Severe infection
• Early life stress
• Changes in gut microbes 

Triggers:

• Certain foods such as dairy products 
• Stress

Risk Factors:

• Young 
• Female
• Family history with IBS
• Have anxiety, depression, or other mental health-related problems

Cure:

IBS is a chronic condition that cannot be cured, very similar to endo. 

Treatments:

• Diet changes 
• Medications
• Therapies 

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Source: https://www.mayoclinic.org/diseases-conditions/irritable-bowel-syndrome/symptoms-causes/syc-20360016 

How To Be a Good Advocate on Social Media (And Make Meaningful Connections to Your Audience)

 If there is one thing the world always needs more of, it's advocates. No matter the issue, meaningful work, and change simply don't get done without advocates and people pushing for that change to happen. About five years ago, with the persuasion of my family, I started this blog. It is the best thing that could have ever come out of being diagnosed with endometriosis because now I get to share my experience and knowledge with all of you! Some of you may want to do the same thing, but don't know how to start, which is why today I'm sharing tips on how to be a good advocate on social media while also making meaningful connections with your audience! 

1. Post either daily or as much as possible: The algorithms on social media are weird, but the more you post, the more it will spread your posts to a wider audience.
2. Use relevant hashtags: Hashtags are a great way to spread your posts to a wider audience that maybe wouldn't have seen it otherwise since they don't follow you. 
3. Follow other accounts that post similar things as you: If you follow other similar accounts, you can help grow both audiences and reach more people with your advocacy.
4. Share what you believe: As someone with a chronic illness trying to spread awareness about it, I have always found it important to share my own truth and lived experience. A lot of social media is fake and many people only share the good moments, but I like to show the good, the bad, and everything in between because there is a huge spectrum when living with a chronic illness. 
5. Use all forms of social media to spread your message: I use Instagram, Facebook, Twitter, and this blog to spread my message. I find that this way I can reach different demographics and age groups. Along with this, use all the media forms within each app. For example, on Instagram, I do regular posts, stories, reels, and videos to get my voice out there. 
6. Show your personality through your posts: You don't want your audience to find the information you're sharing to be boring, so put your own voice into it and make it interesting! 
7. Similar to #6, use plain language: You want to get information out to people in an accessible way. Most people aren't going to want to read something that's super sciency and hard to understand. 
8. BE YOURSELF: You will get people hooked on your posts by being yourself, so don't be afraid to do so!

If you've been thinking about starting a blog or social media account for something you're passionate about, this is your sign!! These tips don't just apply to chronic illness and health-related topics, you can use them for anything you are passionate about. Social media is such a great place to be able to share what you believe with a large number of people, and who knows, maybe you'll even meet new friends that way because I know I have! 

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Facebook: Endo Is Not the End

Being In Tune with Your Body

    It's been a little over five years since I was diagnosed with endometriosis, but I started fighting for my health long before that. When you struggle with a chronic illness that causes you to have chronic pain, you start to know your body on a deeper level than a person who doesn't have those struggles. Since you're trying to do everything you can to prevent pain, you know exactly what foods trigger your symptoms, what activities could be pushing you too much, how much sleep you need to get, certain ways you need to sit, stand, and walk, the list goes on and on. But the bottom line is, especially being a woman, I've had to fight for my voice to be heard and in order to do that, I had to become very in tune with my body. 

    Whenever I go to my variety of doctor's appointments, the nurses and doctors are always shocked at how well I know everything that's happening in my body and how I can pinpoint (most of the time) what is causing me to have symptoms. I tell them that I don't have a choice in the matter living with a chronic illness. Now, this isn't me bragging. I wish I didn't have to do this, but through experience, I know I won't get answers unless I bring suggestions with me to the appointment. Like I've mentioned before on here, I keep a health journal where I write everything I eat during the day, any pelvic pain I'm having, if I made a bowel movement, my stress level, any bladder pain, exercise, and an "other" column for other information I want to add. I do this because if I start having pain, I can look back and try to see if I can determine the cause. It also serves as evidence that I can bring to an appointment to back up my findings. 

    Being in tune with my body has helped me a lot, especially in the last year, but it's honestly exhausting. Having to pay attention and take note of every little thing you do in the day isn't fun and it takes up a lot of time and mental capacity. However, I'm willing to do it because it has helped me get accommodations through school, figure out the cause of my bladder problems, and start to figure out how to heal my injured tailbone, just to name a few. While I hope one day I won't have to do this because medical professionals will just believe me without me having to do their job for them, it is something that works for me right now and I encourage all of you to keep a health journal if you are able. 

Keep fighting, you got this, and remember, endo is not the end!

Follow me on Instagram: @endoisnottheendblog

It's My Endoversary- Tips for Endo Surgery!

Is an Endoversary a thing or did I just totally make that up? I don't know but anyway, today is my five-year anniversary of being diagnosed with endometriosis, wow! It seems so long ago but also not at the same time, you know what I mean?? Instead of doing some sappy post (which you can see over on my Instagram), I wanted to share my tips for excision surgery because as we know, five years ago today, that's where I was. I get messages all the time asking me what to bring, what to expect, how long the recovery is, etc., and while surgery is different for every person, I want to share my experience to hopefully ease some of your worries on the big day!

Bring a pillow and blanket for the car: After all the surgeries I've had, I've felt extremely nauseous after, so being able to lay down and be comfortable in the car is the best thing you can do to help that.

Prepare yourself that your shoulders will probably hurt from the gas trying to escape after surgery: Your doctor will have to pump your stomach with gas to create more room for them to see, but this gas has to escape somehow. This is something I was told beforehand, but I didn't realize how painful it would actually be. 

Rest as much as possible: You just got surgery and your body needs to rest, it's as simple as that!

But get up and walk around your house when you feel up for it: Yes it's important to rest, but it's also important to get up and walk around to get things moving. Make sure you don't push yourself though! 

Don't push yourself or you'll be recovering for a lot longer: Don't think you'll be able to return to regularly scheduled programming right away, your body needs time to heal. 

Have a comfortable recovery station at home: When I got home from my surgery, I set up a station right on my couch with lots of comfy blankets, my heating pad, my water bottle, the TV remote close by, anything you need to help you feel as comfortable as possible. 

Do research on laparoscopic surgery before the big day: There are lots of blog posts out there explaining people's experiences, including mine that I attached below!

Have foods at home that are easy on the stomach: There's a possibility the anesthesia will make you feel nauseous, I know it definitely did for me, so make sure you have foods like soup and ice cream that are easy on your stomach. 

Avoid lifting heavy objects or putting other strain on your abdomen:  You will have open incisions on your abdomen, so you don't want to do anything that's going to rip those open and prolong your recovery process. 

Feel relieved that your surgery worked (hopefully) and you'll be in less pain!

My Surgery Experience From a Previous Blog Post (don't make fun of my terrible writing, I was 14 haha!):

Getting this surgery is the only way to officially diagnose Endometriosis. I got the surgery almost a year ago now (five years now!) at Boston Children's Hospital.  Before the surgery, I was in so much pain every day, now after the surgery, I only have a few days a month where I am in a lot of pain.  It is an easy surgery.  It is same-day, so you can go home a couple hours after it is done.  The doctors make two small 5 millimeter incisions; one inside the belly button and the other just below the abdomen. The incisions leave a small scar, but nothing extremely noticeable.  The recovery only takes about three to four days, maybe longer depending on the person.  The second day I was in a lot of pain from the doctors probing the inside of my stomach.  Also when they do this surgery, the doctors pump your stomach with gas in order to see inside more clearly.  For females, in order for the gas to release, it has to travel up through your body and is released through the shoulders.  I would not say this part is painful, but it is definitely uncomfortable. Overall, the surgery helped my pain so much!  I one hundred percent would recommend getting it. The doctors were able to find a lot of Endo, and they were able to get rid of it!  Just remember, this surgery is not a cure, but it is the closest to a cure so far.  If you have any more questions, feel free to leave them in the comments. 

*Disclaimer: This is just my experience, everyone has different experiences but I was asked to share my own. 

WHAT IS INTERSTITIAL CYSTITIS?

I've been talking about interstitial cystitis (IC) a lot on here, but it's also a disease that many people aren't aware of so I wanted to make a post explaining it all. As you know, I've been going to Boston Children's Hospital to figure out my bladder problems, and right now, they are treating it like it is IC. 

Definition:

"Interstitial cystitis is a chronic condition causing bladder pressure, bladder pain, and sometimes pelvic pain." My chiropractor and physical therapist basically explained it to me like this: since my bladder is so inflamed, it is sending the signal to my brain to empty it before it is full. When you continuously empty your bladder before it's full, it starts to shrink, like a balloon. This turns into a vicious cycle that's hard to get out of. 

Symptoms:

For me specifically, my symptoms include pain that feels like lasers shooting through my bladder, bladder frequency, and urgency. Some other common symptoms include:

• Pain in your pelvis or between the vagina and anus in women
• Pain between the scrotum and anus in men (perineum)
• Chronic pelvic pain
• A persistent, urgent need to urinate
• Frequent urination, often of small amounts, throughout the day and night (up to 60 times a day)
• Pain or discomfort while the bladder fills and relief after urinating.
• Pain during sexual intercourse

Cause:

There is no known cause for IC, but people will IC often have other chronic illnesses with chronic pain. For me, that illness would be endometriosis and it all has to do with my pelvic floor muscles. 

Risk Factors:

• Sex: IC is more common in women than in men. It is estimated to affect 3-8 million women and 1-4 million men in the United States.

• Body Characteristics: Fair-skinned people and redheads have a greater risk of IC.

• Age: Most people are diagnosed with IC in their 30s.

• Having a Chronic Pain Disorder: IC may be associated with other chronic pain disorders.

Cure:

There is currently no known cure for IC.

Treatments:

• Pelvic Floor Physical Therapy: this helps work on the pelvic floor muscles and stretch them out so your bladder can stretch back out again. I can't even describe how much it has helped me!

• Diet: eating an anti-inflammatory diet has also really helped me. Foods such as dairy, carbonation, sugar, and red meat are good to avoid to help ease bladder pain. 

• Biofeedback: Controlling the body's heartbeat, brainwaves, breathing, and blood pressure by monitoring them with sensors. This is a popular treatment method, but I don't have any personal experience with it. 

• Medications: there are certain medications that can be taken in pill or injection form that have been known to help people with IC. I don't have any experience with these medications either.

Source: https://www.mayoclinic.org/diseases-conditions/interstitial-cystitis/symptoms-causes/syc-20354357

How I Helped My Bladder Problems!

 If you've been following my blog or Instagram for the last several months, then you know that I've been struggling with severe bladder frequency and bladder pain. This started getting more severe in September after being home from college since March due to the pandemic. I eventually made an appointment at Boston Children's Urology and they've been helping me the last couple of months, however, what has helped me the most is going back to pelvic floor physical therapy when I came home for winter break. I know a lot of people with endometriosis also suffer with bladder problems because it creates a lot of inflammation in that area, so I want to lay out the steps I took to help myself feel so much better in just two months. 

Wand:

A wand is a kind of dilator that focuses on stretching the deep pelvic floor muscles. Those muscles are basically responsible for holding all your organs in that region of your body, so when they are out of wack, that can create many problems. The wand is curved so it can reach those deeper layers and I highly recommend asking your physical therapist about it because it has helped me so much with getting those muscles to relax and getting the pressure off my bladder to decrease frequency.

Diet:

I've talked about this a lot on my Instagram, but I started eating an anti-inflammatory diet this summer and have gotten more serious about it lately. The things to look out for the most to help your bladder in this diet (at least for me) are bubbly drinks because of the carbonation and sugar, artificial sugar like in candy, and dairy. I still allow myself to have dairy and artificial sugar every now and then because it's hard not to, but not eating it most of the time has really helped with my bladder pain. 

Cupping:

Starting about a month ago, I started doing cupping in physical therapy. I'm going to do a whole blog post explaining what cupping is and my experience with it, but it's basically little cups that suction onto your skin and they relax and stretch the muscles as well as release all the toxins built up in your skin. This has not only helped my pelvic pain immensely but also my tailbone that has been injured since July. I could not recommend this enough if you have the opportunity to try it out. 

Mind Tricks:

I call these mind tricks for lack of a better word, but they have really made all the difference when it comes to my bladder frequency. The first trick my physical therapist taught me is to ignore the first pee signal your bladder sends you to see if it goes away. When you have bladder inflammation, your bladder is swollen so it thinks it's full when it's actually not. This turns into a nasty cycle because when you start emptying your bladder when it's not actually full, then it starts to shrink which is what was happening to me. By ignoring that first signal, you might get a longer stretch between empties which will help your bladder stretch back out. The second trick I use is when I get the signal to go to the bathroom, I tell myself that I don't need to go, especially if I just went. I normally do this at bedtime when I have just gone to the bathroom and it helps. Sometimes all it takes is making yourself think otherwise to help :)

Cranberry Supplement:

This is a very simple one, but cranberry is known to be very good with urinary tract health. Cranberry juice is not good in this situation because of the sugar, so a cranberry supplement is a great choice! It's a small thing that can make a big difference for your overall health. 

If you are struggling with bladder issues like me, I strongly recommend all these strategies to combat it. Going back to pelvic floor physical therapy is the best decision I've ever made for myself because it has helped me so much with all my problems, big or small. I understand not everyone is lucky enough to be able to go to physical therapy, but there are a lot of things you can look up online to help yourself. And as always, feel free to DM me on Instagram @endoisnottheendblog if you are experiencing any of these problems and want someone to talk to who understands!

How to Study with Chronic Pain

Since school is starting back up again after winter break, I thought I'd share some of my favorite strategies I use when studying/doing school with endometriosis/chronic pain. Studying seems like such a simple thing, but it's just another thing made harder by endo and the pain that comes with it. Comfort is always my top priority because it is something I can control to make myself feel my best, so I hope these strategies help you!

1.  Find a comfortable seat- I find that a seat cushion helps me a lot and it's okay to sit in your bed if you have to
2. Take breaks when you need them
3. Sit with your heating pad on (this is something I do all the time)
4. Get up and walk around to loosen things up
5. Start studying several days before the test in case you have a flare the day before
6. Wear comfortable clothes (leggings are seriously my best friend)
7. Drink plenty of water
8. Prop your laptop/books up so you're not hunching over your desk
9. Make a comfortable study space in your room if you're not feeling well enough to make it to the library or another building 
10. If you think it's necessary, talk to your teachers and/or the accommodations office if you need extra time or any another accommodations because of your chronic pain 
11. Try all your favorite pain coping strategies while studying 
12. Finally, don't be too hard on yourself!

My Health Goals for 2021

 Happy New Year everyone!! 2020 was a hard year for everyone around the world but now is a chance to start fresh and create some goals for the coming year. The second half of 2020 for me was focusing a lot on my health. In the context of this post, health means my chronic illnesses, my pelvic floor dysfunction, and eating an anti-inflammatory diet. I plan on making 2021 a year about focusing on my health, listening to my body, and hopefully minimizing my pain. So, for my first blog post of the year, I wanted to share some health goals I have for myself!

1. Continue going to pelvic floor physical therapy regularly 
2. Do all the stretches, exercises, and techniques my PT gives me every day
3. Try harder to eat an anti-inflammatory diet (it was so hard around the holidays!)
4. Talk to my college's dietitian about foods I should eat while at school that won't work up my dairy, sugar, and gluten sensitivities 
5. Get out for walks more
6. Drink 64 oz or more of water every day
7. Continue taking the supplements that are helping my urinary tract health
8. Get plenty of sleep every night
9. Make sure I don't overly stress myself out since that works up my endo pain
10. Continue writing and posting a blog post every other week
11. Bonus: Try my best to achieve all these goals, but not be too hard on myself if I miss a day!

If you want to focus on improving your health like me this year, then I recommend making a list like this and sticking to it. I chose goals that I think are attainable for me because I have already been doing them, so make sure you are making goals that are attainable to you, and don't be too hard on yourself. I make a to-do list every day because it keeps me motivated to check things off my list and so I know I've completed everything I wanted to for the day, so I recommend that too. I hope you have had a great start to the new year and I'm wishing you all happiness, safety, and health in the year to come!

Update On My Bladder Problems

 If you follow my Instagram, you may know that I have been struggling with bladder pain and frequency for the last couple of months. It is not really ideal to be going through this while away at college and in a pandemic, however, my body clearly has a mind of its own. I have been peeing 15-20 times a day, which is about once an hour or more, and I sporadically get very intense bladder pain that feels like a bunch of lasers are going through my bladder at the same time. Not to mention also getting up to pee 3-5 times a night, so as you can imagine, I'm exhausted. I finally had enough of this and decided to call the urology department at Boston Children's since that's where I get my endometriosis care and I have nothing but good things to say about them. About two weeks ago, I went to Boston Children's to get some tests done. I got a urine flow test where you pee into a "special toilet" (their words) and they see if there are any irregularities. I also had an ultrasound done to see if there was anything out of the ordinary. The ultrasound came back clear, but the urine flow test showed that my muscles were tensing up when I pee which means that my bladder is probably not emptying fully. 

The day after I got these tests done, I had a meeting with a nurse practitioner from the urology department to talk about what was going on. To help the urinary frequency, she said I should start double voiding (pee, wait 10 seconds, then try to pee again to make sure I am emptying my bladder fully), drink more water during the day and hardly any at night so I hopefully won't be getting up all night, and going to the bathroom a half-hour before bed, then right before bed to help with the previous issue. She also put me on a stool softener and fiber gummies just to make sure I wasn't constipated. After my appointment, she called me back saying that she wanted to start me on a medication that is supposed to treat an overactive bladder. So, I did everything she said for the last two weeks, and unfortunately, not much has helped. 

I met with her on a Wednesday and the first weekend after that was pretty much hell. I was having terrible diarrhea (sorry TMI, but this is real life!) and the new medication was making me so nauseous. But I decided to stick it out in the hopes that my body would soon get used to it and it would start helping me. After about a week or so, the nauseous died down and now I only get it a little bit after I eat. That brings me to Wednesday of this week. My bladder pain had actually decreased a lot which I was obviously happy about, until Wednesday when it came back at full force and worse than it's ever been. It's now Friday when I'm writing this and the pain hasn't subsided at all, so I don't know what's going on. I had another meeting today with the nurse practitioner from Boston Children's and I originally didn't hear what I wanted to hear. Despite me telling her that the stool softener wasn't helping and it was actually making everything worse, she still thought I was constipated, however, I spoke up for myself because I know my body and I know I'm not constipated, so she took me off the stool softener and I am going to continue with the fiber gummies and try to eat more fibrous foods. Next, she wasn't very happy that the bladder medication was making me nauseous, so she was wary about increasing the dosage since it hasn't really helped at the dosage I'm at. I convinced her to up the dosage and I would start taking it once I got home for break and it would be easier to deal with nausea if I had any because I'm desperate for relief. Then she wanted me to come in to get a special x-ray to rule out constipation. 

Like you may have seen on my Instagram, I really think that I have a disease called interstitial cystitis (IC) because I have all the symptoms (urinary frequency, peeing a lot at night, and bladder pain), and it is very common in people with endometriosis. I was hoping at this meeting that we would finally talk about me having IC, but we didn't. However, I got a call from her a little bit ago that she changed her mind and she thinks we should start looking down the path of IC. She wants me to keep a diary of how many times I pee and how often and she's going to call me on Monday to discuss it. If it doesn't get any better, then we're going to start talking about IC and she's going to put me on an antibiotic that will hopefully help. I was really happy by this news because I have thought I have had this disease for months now, but I felt like no one was listening to me, even when I present with all the symptoms. It may seem crazy to people outside of this community that I am happy to have someone say I probably have another disease with no cure, but after all the medical trauma that I and many other people with endo and related diseases have gone through, it feels so good when someone validates your pain. 

I am not sharing this with you because I want your pity or that I'm trying to complain, I'm sharing this for education because IC is also another disease that people don't know that much about (hence not having a cure). What I want you to take away from my story today is that you shouldn't be afraid to speak up for yourself. You know your body better than anyone, no matter what anyone else tells you. If you have done the research and you feel strongly about something, then PLEASE bring it up to your doctor because you might not find any answers if you don't. I spoke up and I got the answers I was looking for, thankfully. Also, please feel free to reach out to me on my Instagram @endoisnottheendblog if you want to talk about anything endo or IC related because I know it really helps to talk to someone who understands! 

Good Things About Quarantining with Endometriosis

This may be an unpopular opinion, but quarantining with Endometriosis is not that bad. Having a chronic disease makes you miss out on a lot of things because you never know when you're going to have a bad day. To lift spirits during this hard time, I put together a list of positives to focus on rather than negatives when it comes to having a chronic illness during a global pandemic:

• You get to work or do school from home!
• Many people with Endo have to miss work or school because they are in too much pain, but now it's a lot easier since we don't have to leave our houses.
• You can take a break whenever you want!
• I'm not sure about those who are working from home, but as a college student doing school at home, I can pretty much take a break whenever I need it which is really nice.
• You get to wear whatever you want!
• Having Endo, I hate wearing restricting pants like jeans or work pants, but even if you're on camera, no one can see you're wearing pajamas on the bottom!
• You don't have to feel bad about not making/canceling plans with people!
• I always feel terrible when I can't do things with my friends, but no one is supposed to be doing anything right now so I don't have to worry about it!
• You can do your work laying in bed!
• I don't know about the rest of you, but I have done a lot of homework in bed recently (which isn't necessarily the best thing) but it is definitely nice when sitting in the same position all day causes you a lot of pain.
• You don't have to feel pressure to have your hair and face all done up every day!
• I don't know about you, but I have barely worn makeup at all during this time at home and my skin loves it!
• You don't have to feel bad for taking time for yourself!
• For me, I always feel bad when I take time for myself to relax and destress, but I know that is something my body needs dealing with a chronic illness, so this is a great time to focus on yourself, whatever that entails. 

I know it's hard to not focus on the negatives and hardships during this time, but maybe this was meant to happen so everyone can slow done and appreciate the little things in life and take care of themselves. 

Immunocompromised During COVID-19

This pandemic is a scary time in the world for everyone, but please take a second to think about those who are immunocompromised, like people with Endometriosis. On the outside, I look like a healthy young woman, but on the inside, I have Endometriosis and asthma that both cause my immune system to be weaker than the average healthy person. If you have the mindset that you are safe from COVID- 19 because you are young and healthy, then you need to stop thinking that way. Yes, you yourself may not get it, but what about your grandparents, your uncle with cancer, or your friend who has Endometriosis or some other chronic disease, what about them? By not staying inside, you are putting everyone else in danger. I know this is not ideal, no one thinks that it is, but this will be over a lot sooner if everyone follows the rules and stays inside. This may not seem like a big deal to you, but this isn't about you. This is about doing what is right and safe to benefit the greater good. This is bigger than all of us and the least we can do is listen to the doctors in charge of this pandemic and stay home. People like me shouldn't have to be scared to go outside and take a walk. We should have comfort in knowing that everyone is following the rules, but unfortunately, we don't. So please, the next time you want to go hang out with your friends, think about all the immunocompromised people in the world, and hopefully, you'll make the right decision to stay home.