Ten Years Later

This week, I celebrated the ten year anniversary of my endometriosis surgery and subsequent diagnosis. The day I was officially labeled as “not crazy” and entered into a completely new chapter of my life. It’s hard to believe it’s been ten years. I genuinely have no idea where the time has gone.

For so long before that surgery, I was fighting to be believed. Fighting doctors. Fighting my own body. Fighting the quiet voice in the back of my head that wondered if maybe everyone else was right and I was exaggerating. That operating room gave me more than a diagnosis. It gave me validation. It gave me proof. It gave me permission to trust myself again.

Endometriosis has taken a lot from me. It has taken days, weeks, entire seasons of my life. It has taken energy I will never get back. It has taken a version of girlhood that felt carefree and simple. But it has also made me into the person I am today.

Someone who knows how to advocate for herself and for others. Someone who has quite literally made a career out of it. Someone who does not care what others think because she has already survived being doubted at her most vulnerable. Someone who is confident. Someone who knows what really matters in life because she learned early on how fast your life can change. Someone who surrounds herself with good people because she understands how precious time is. Someone with unwavering determination and ambition because she has had to fight for everything. Someone who is kind because she knows better than anyone that people can be fighting battles silently. Someone who others can look to when they have just been diagnosed and feel like their world is ending. The list really does go on and on.

I am so proud of the person I am today. And I hate to say it, but I truly do not think I would be this version of myself without all the adversity I have faced. Ten years ago, I remember thinking that if I was going to have to live with this, it had to mean something. I wanted to turn my pain into purpose. I didn't know how yet. I didn't know what that would look like. But I knew I could not let it be for nothing. I am proud to say I have done just that.

I worked with my doctors and my boss to write and file legislation that eliminates the primary care referral requirement for specialty gynecological care so others do not have to fight as hard as I did to be heard. I took the worst moments of my life and turned them into policy. Into change. Into something tangible that could make the path a little smoother for the next person sitting in an exam room begging someone to listen.

Every single day in my job, I use the skills that were sharpened by my pain. I advocate for people in their most vulnerable and hardest moments. People navigating housing crises. People dealing with healthcare systems that feel impossible. People who are exhausted and scared and just want someone to pick up the phone and fight for them. I know how that feels. I know what it is like to feel small in a system that is supposed to help you. And I refuse to let people feel alone if I can help it. And I am just getting started.

In the last ten years, I have graduated high school. I graduated college. I am now just months away from graduating with my master’s degree. Somehow, I have thrived academically every step of the way. I think part of it has been distraction. School gave me structure. It gave me something to focus on when my body felt out of control. It reminded me that my brain still worked even when my body felt like it was failing me.

I completed internships. I nannied. I worked in offices on my college campus. I led many clubs. I said yes to opportunities even when I was tired. All of it led me to the full time job I have today. A job that is challenging and exhausting and demanding. A job that I love. A job that constantly reminds me that everyone is carrying something.

Sometimes I look back at fourteen year old me, sitting in therapy for depression because it felt like no one believed her pain, and I wish I could hug her. She could not imagine a future. She could not imagine feeling strong. She definitely could not imagine a future this bright. She thought her life was over before it had even begun. If only she could see me now.

I still struggle every single day. Every single day is a battle to get out of bed. Chronic illness does not disappear just because you have grown around it. The pain still shows up. The fatigue still lingers. The frustration still creeps in. But I have tools now. I have coping skills. I have perspective. I know what my body is capable of surviving. I know that I can do hard things.

The last ten years have not been easy. They have been messy and painful and complicated. But they have also been filled with growth, purpose, and resilience I never knew I had.

I cannot wait to see what the next ten years will bring. I hope for less pain and fewer medical battles. I hope for more advocacy, more impact, more moments where someone feels heard because I spoke up. Most of all, I hope I continue to honor that girl who just wanted to be believed.

Ten years ago, I was fighting for a diagnosis. Today, I am living proof that you can fight, survive, and still build a life you are proud of.

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Feeling Invisible

Having an invisible illness, or multiple in my case, is a uniquely lonely experience. No matter how hard others try to understand, no matter how much time they spend with you, they’ll never truly get it unless they’ve lived it themselves. And that’s not their fault. I’m incredibly lucky to have some of the most supportive friends and family, even though they don’t fully understand what I go through every day. Honestly, I’m glad they don’t. I’m glad they don’t suffer the way I do. I wouldn’t wish any of this on my worst enemy. But that doesn’t make it any less lonely.

On top of feeling invisible, I often feel misunderstood. It’s so hard to explain what I experience in my body every single day. Feeling exhausted after doing nothing. Being in extreme pain but still having to show up and move forward. Carrying the guilt of not being able to participate in life the way I want to. Crying on vacation because my body hurts so badly, while seeming ungrateful even though I wouldn’t want to be anywhere else. Skipping breakfast with friends on weekend mornings because I need to sleep as long as possible to make up for another night of restlessness. Begging for accommodations at school while fearing judgment or denial because I look “fine” and put together on the outside. Going home early when all I want to do is stay. Spending hours driving across states for doctor’s appointments week after week. Living with the constant fear that my heart could give out at any second, or that my endometriosis is growing back with a vengeance.

Because others don’t understand my lived experience, it’s hard for them to grasp that this is simply my life. So sometimes, they forget. I almost never show it outwardly. They invite me to hike mountains or run 5Ks as if that’s something my body can do. I wish it was. But that’s not my reality right now.

The person I am today has been shaped by living with invisible illness for the last ten years. I don’t care what others think of me because I’m too focused on staying alive. I have a lot of confidence, because if I can survive ten years of feeling miserable in my own body, I can survive just about anything. Sometimes I can be blunt. Sometimes I forget others’ feelings. After being worn down by illness for so long, I’ve lost a lot of my sensitivity, and I’m still learning how to balance that.

My friends sometimes give me a hard time because I don’t love meeting new people or letting others get close to me, especially as I’ve gotten older. What they don’t see is how exhausting it is to explain my limitations over and over again. It’s awkward. It’s invasive. And yet, it’s often necessary just to justify why I do the things I do. My energy is extremely limited, and I want to spend what little I have loving on my inner circle, the people who have been through it with me. The ones who have tried, in their own ways, to understand.

Even if my loved ones don’t fully understand what I’m going through, they still find ways to show me they care, and I appreciate it more than they know. Seeking out the only chair in the bar and giving it to me. Checking in when I go quiet. Letting me cry and vent my frustrations (thanks, Mom). Suggesting something low-key instead of a night at the club. Making sure I’ve made it home safely. Validating my feelings around chronic illness. Sending flowers or my favorite food after surgery. Showing a genuine, consistent interest in my well-being. I am so deeply thankful.

All of this is why I created this community ten years ago and why I continue to lean on it for support. I know others living with invisible illness feel this same mix of loneliness, gratitude, exhaustion, and resilience. And while I hate that any of us have to experience this life, there is comfort in knowing I’m not alone. The worst club with the best members, as we like to say. In the end, this space exists to remind us that even when our pain goes unseen, our stories still matter, and we don’t have to carry them by ourselves.

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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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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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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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Back to School!

Some of you may have noticed that I took a month off from posting and that’s because the beginning of school has been crazy. The day I moved into school, I barely had any time to unpack because I had to go right to rehearsal for the choir I’m in and that pretty much lasted the rest of the day and the rest of the weekend. Does anyone else get super stressed when all their stuff is in boxes or not in its correct place? Well, I do and that’s what I was feeling like for several days before I had the chance to finally finish unpacking and decorating. Then it was time for classes to start. The good news is that I love all my classes! All my classes are within my major and minor, so I’m never bored and always learning something new. I don’t know if you know this about me, but I LOVE learning, it’s probably one of my favorite things which is why I love college so much; I get to learn about topics I’m actually interested in, unlike most of my classes high school. 

I mentioned in my previous post that I took on a lot this semester and I wasn’t sure how I was going to manage everything. Well, it’s been going pretty well so far! It was kind of a pain getting my schedule all worked out so I could be at every club meeting or rehearsal, but thankfully, I did it and this week everything was finalized. Last weekend, I had the honor of singing the National Anthem at the home opener football game at my college and it went so well! I’ve been singing the National Anthem at events ever since middle school, but I’ve never sung it for my college before, so I was a little nervous. But the President of my college said it was amazing (go me!!). 

I was able to get a single room this semester because of my medical accommodations and needing the privacy to do my pelvic floor physical therapy tasks, and that has been working out very well. While I miss having a roommate, I know I made the best decision for my health and that my body is definitely going to thank me for that this semester. With that said, I haven’t had any big flare-ups yet which I’m very happy about. Stress is one of my biggest triggers, so when I feel like I’m about to get overly stressed, I try to take a minute and relax so I don’t cause any other issues for myself. 

I was finally getting into the swing of things this week, then I got a cold. I was actually pretty scared at first that it was COVID, but I was tested and it's not thankfully. It's so weird how "normal" sickness hasn't really been a thing since the pandemic started because of masks and physical distancing, but as the world opens back up, I guess so does our susceptibility to other illnesses. Like this cold, you are always going to have things that interrupt your plans, but try to find the good in everything. Luckily this cold hit me over the weekend, so I'm going to rest up so I won't have to miss any classes next week.

If you are going back to school right now, I know it can be a very stressful time. My biggest piece of advice is to learn your triggers so you can try to avoid setting them off. Obviously, it’s not going to be perfect, but at least you are trying to do what’s best for your body. Remember, you can do this and endo is not the end!  

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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!

Follow me on social media!

Instagram: @endoisnottheendblog

Twitter: @endoisnothend

Facebook: Endo Is Not the End

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! 

Follow me on social media!

Instagram: @endoisnottheendblog

Twitter: @endoisnothend

Facebook: Endo Is Not the End

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!