It's Been a Hard Month...

Well, Endometriosis Awareness Month hasn't been treating me very kindly. I feel like whenever I start to get better, something else happens. I want to give a health update, but I want to preface this by saying that I'm not looking for pity in any way. I just want to share the reality of living with a chronic illness and all the complications that come with it. 

My month began with my bladder beginning to leak, and experiencing urinary urgency which are two things I have never experienced before. It's a really crazy feeling when you have no control over what your body does. It's honestly kind of scary at the same time because you never know what to expect. It made me feel like I was a little kid who hasn't been potty trained yet. I am happy to report that those instances have gotten better recently which is a big relief. They still happen, just not as often. Along with this, I am experiencing bladder pain and some endometriosis pain as well. This is weird because I thought I solved the problem of bladder pain through pelvic floor physical therapy, but maybe I just need to try some different exercises. 

The second issue I've been dealing with this month has been happening on and off for a while and I've talked about it on my Instagram account a little bit. I keep experiencing intense nausea and some upper abdominal pain after everything I eat. It tends to be worse while I'm at school because let's be honest, this food is just not the best, to put it nicely. It got to the point earlier this week that I was afraid to leave my room in fear that I would get sick. I decided enough was enough and went to urgent care this past Tuesday to hopefully get the problem solved. From the moment I walked in, I felt dismissed by everyone working there. This is unfortunately a feeling that I, and many other young women, feel when trying to advocate for ourselves in a medical setting and I am so sick of it. I explained my symptoms and both the nurse and doctor made me feel bad for not coming in sooner. I tried to explain to them that I have a chronic illness, so these symptoms were not necessarily alarming to me as I have experienced much worse. The symptoms were more of an annoyance at this point. They didn't really understand this. I wanted to tell them if I went to the doctor every time I had an issue, I would spend my whole life there. 

The doctor said she thinks I have gastritis and began treating me for that. I also had blood work done and an x-ray taken. The blood work thankfully came back fine, but the x-ray showed that I was pretty constipated. I had a feeling that this would be the case as I've been struggling with bowel movements for a while. However, this could offer an explanation for my bladder leakage and urinary urgency as well. When one has a full bowel, it pushes up against their bladder which can cause more frequent urination, urgency, and leaking. I'm hoping that this is the case for me and I that don't have any other issues with my bladder. The doctor prescribed me a medication to help with gastritis that's hopefully supposed to calm down the acid in my stomach. Although, last night, I noticed I was developing a rash on my legs and feet. I looked up the side effects of the new medication and of course, a rash was one of them. I'm hoping it goes away on its own soon, but if not I'll have to call the doctor and let her know. 

Along with that medication, she had me buy magnesium citrate at the store which is a drink that clears you all out when you're constipated. I drank it the next day and immediately started to feel so nauseous. I tried to focus on my work for my internship, but I couldn't. Then, before I knew it, I was getting sick into my trashcan. I guess the medicine worked for the wrong end... I felt much better afterward though! The magnesium citrate did mostly help to do what it was supposed to, but I think I'm still constipated because I threw most of it up. I take MiraLax and fiber gummies every day, but it is rare I find relief from that, so all suggestions are welcome. 

The third part of my week from hell has to do with some heart problems I've been having. Starting on Monday, my heart started beating pretty irregularly. I have never experienced this before, so it freaked me out a little bit, but I wasn't too concerned yet. However, on Tuesday, my heart started racing up to 200+ beats per minute. This would last about 30 to 60 seconds at a time, then stop for a minute before starting up again. When it happens, it completely knocks the air out of me so it is difficult to breathe. It also makes my chest and face tighten, turn red, and start to sweat. Now I was/am really scared. Many people might chalk it up to stress, but I don't feel mentally/emotionally stressed or anxious at all. However, maybe my body is under physical stress when having all these medical issues on top of each other so my heart is working overtime. I'm really hoping it's something simple like that and nothing worse. This is still happening, so I have a doctor's appointment with my primary care doctor on Tuesday, so hopefully, nothing bad happens before then. I had mentioned this happening to the urgent care nurse earlier this week, and she very rudely told me that is something they can't help with and I need to be seeing a cardiologist. 

Needless to say, it has been a hard week and month in general. My body is falling apart all over the place and I feel so out of control because I can't do much to help it. Please send any prayers and good thoughts my way so that I can get these issues figured out soon and I can enjoy the rest of my semester. I hope you are all doing well. It's a scary world out there, so please stay safe and know that I am sending prayers/good thoughts your way as well! 

Looking a lot better here than I feel on the inside...😂

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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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