ENDOmetriosis Awareness Month: Last 10 Days of March w/Endo Flare

The last couple of weeks of March has me reflecting on my Endometriosis (endo) diagnosis I received in Nov. 2025. I have hopes this new medication will be at best a good temporary solution for me until I have a hysterectomy and can get the rest of my adhesions and organs freed up, and figure out the safest medication treatment options are for me to keep holding off more surgeries...

These past couple of days of March I have been coming out of the worst post-surgery endo flare up and was able to find some external motivation in many places of my life while also reflecting on how my four-year journey of graduate school for Social Work is nearly over. 

Fun fact: endo flare ups don't only happen when people are on their period, that is just typically when it is at its worst inflammation. I have chronic pelvic pain, and part of me thinks that was only related to the multiple traumas I have experienced and have been carrying around with me for over a decade. It is all of the above, the endo inflammation and traumas. 

I don't typically do these types of detailed reflections, but I really want people to understand how much of my life is being taken up by dealing and navigating the endo symptoms/flare ups alongside having POTs. Not to mention the dynamic and unpredictable nature of the symptoms.

Reflecting and writing it out is helpful for me not just to process my emotions and the past ten days but to also learn more about my symptom patterns and to actually put words to them now that I am more aware of what is happening with my body. 

The last 10 days or so of March have been so difficult to navigate with having a great weekend with friends, not knowing if I was flaring up when I vomited since it hasn't happened in so long, I thought maybe with all the people I see I picked up the stomach bug. Many people were rescheduling and sickness was going around. I was also questioning if it was the endo because it felt like I had some ovarian cysts for the past week or so before vomiting...I was fatigued, depressed, had chronic pain and GI issues, so I rested for two days (for the most part, got my taxes done & did a group project virtually). I felt well enough to work on Wednesday when I realized I didn't have the stomach bug since I only threw up a few times in one day. 

Thursday, I showed up to the office where I got my period and was so upset. I wasn't expecting my period for at least another ten days, it has been routinely two weeks late each cycle post-surgery. I was feeling like I was going into an endo and POTs flare up, which is typical with getting my period. Typical yet daunting and soul crushing. 

However, on March 11, I accidentally forgot to take my new medication, only one dose. By the time I had realized, found the pill on the floor...nearly 24 hours later. It was too late to take the missed dose. I wonder if that has something to do with this period being the worst post-surgery, I hope it is because I don't know how I am going to make it through the next three months of school if I have to deal with this pain and these intrusive symptoms. 

That Thursday, I did my best to put on a brave face as I sat through an hour of individual supervision, chatting with coworkers, a two-hour long work meeting, and then I booked it home. My symptoms were thankfully only slowly escalating throughout my time at the office. 

Once I was making my way out of the office, I had a horrible pre-syncope spell in front of others that I had to mask (I don't think anyone noticed) but was able to sit down immediately. I was slowly feeling better as I sipped on water, caught my breath, and was distracted by my hilarious coworkers. I was able to make it to my car with the help of my cane that I have been using more frequently. My symptoms started to escalate even more. 

Once I made it home after trudging slowly up the stairs, I totally crashed out. I was nauseous, weak, fatigued, shaky, brain fogged (cotton balls in head), tachycardic, dizzy, with my PELVIS ON FIRE!!! Endo is an inflammatory disease if you didn't know that--I didn't until recently and it makes SO much sense. 

My pain was so bad it felt like I was being ripped in half at the waist and below.....I had sciatica pain going down both legs but much worse in the right that I barely noticed the left. I sobbed as I made my way to my bed to lay down, take some meds, got my heating pad on high, elevated my legs before I distracted myself with some YouTube. During these past ten days or so I only got an average of about 5 hrs of constantly tossing and turning because of the pain and discomfort. I wasn't really able to do any napping because the pain, discomfort, or symptoms disrupted sleep and I had trouble sleeping or didn't have the time. 

Friday I was still feeling awful, but the pain wasn't quite as bad. By pushing myself (which I have to do often), I was able to get some work and internship tasks done from home. Then I finished reading and preparing for my group teaching role for one of my two classes on Saturday. 

Friday night, I was feeling a bit better but still crappy. My depression lifted a bit, and I felt proud of myself for getting some things done. So, Friday evening, I went to my brother and his partners place, who is in her third trimester with the nephew that is going to make me (blood) auntie! I am very excited to be an auntie to a baby that is only ten minutes away! Earlier that week I was ordering some gifts for the baby shower that is coming up soon enough. I was getting emotional ordering the gifts and hadn't seen my brother and his partner for a while so that is why I pushed myself to go to their place to visit on Friday evening. 

I had a lovely evening catching up with those two that I started to feel a bit more motivated with something to look forward to on top of finishing school, starting a new career and honestly, turning 30! I can't fucking wait to be out of my 20s. I am ready for a big new chapter of my life to start despite knowing I need major surgeries in the future and the many difficulties navigating that and treating the endo alongside the POTs will be.  

Saturday, I slept in and woke up not feeling well still being in an endo flare up with cramps, pain, headache, dizziness, stiffness, chronic pain, and POTs tachycardia that I typically wake up with nearly every morning and just hope it goes away with meds, food, and fluids. I slowly got ready to go to class, grabbed my amazing portable heating pad I got recently that needs a better portable battery on it but other than that is perfect. 

I was in quite a bit of pain and discomfort for my first two-hour class, I was fatigued, brain fogged, and glad I was able to color while we talked about the hooding ceremony that is happening because I used my voice to advocate for my mobility and other physical needs (an insanely large commencement at US Bank Stadium with ALL graduate programs plus 10,000's of guests--not accessible for me who won't even be done with my internship by the time commencement arrives, not to mention we have a final summer capstone we have to complete). 

An intimate hooding ceremony two days before commencement it is, I am so excited about having this much more doable option that is smaller crowd, personal, and on campus. Proud of myself for speaking up to get this with ALL of the work I have put into school and just staying alive and supporting my clients and my people these past 4 years. Then we had two classmates give case studies which were super interesting, but pain makes it difficult to focus. Interesting case studies, critically thinking with my classmates and professor and coloring are all great distractions from pain and other symptoms. 

I was purposefully trying to mask less in the first class so I would have more energy to mask and able to put my active listening presenter self on the front lines for my second two-hour class since me and two group mates had to teach it and lead the discussion, which was great but exhausting. 

After both classes, my professors checked in with me, and I needed to check in with them anyway, so I felt a bit cared for with them checking in with me. Having professors and supervisors that are accommodating has really been what has helped me get through this last year and it is even more difficult than I could have imagined. 

Saturday night I just relaxed and was super fatigued, took a bath and enjoyed a show. Sunday, I felt much better, still not great but overall, better compared to the past few days. I was feeling motivated after getting that in class assignment done and seeing family. I was able to get a few things done around the apartment but mostly relaxed because I didn't want to overdo it before a long work week, especially Monday. Sunday night into Monday, I got 9 hours of decent sleep with my normal amount of tossing and turning. 

So Monday, I woke up well rested compared to the past week. I felt the best I had felt in weeks, maybe months. The weather was beautiful, my mood was elevated, and I was feeling motivated. I caught up with my very first professor and that also felt very encouraging and motivating, we reflected on the past four years and how close I am to being done including what I have left to do--like applying for the license.

Then I had three work client meetings, which I did find time to rest and eat a meal in between two of those meetings. I was exhausted from such a long and productive day but really wanted to see some friends, so I stopped by to hang out with two of my closest friends and their adorable two-year-old. 

Tuesday (today), I woke up with a headache, feeling fatigued, brain fogged, and I had internship supervision and DBT shadowing from 10AM until 3PM (all virtual from my cozy home office). My supervisors and fellow interns were encouraging and supportive as well. Then I had worked for a few hours, until I crashed out (hit a wall of fatigue and was in POTs flare up while still dealing with endo chronic pain and getting over period symptoms too).

What is so fucking irritating about having chronic & dynamic illnesses is it interrupting different parts of your life including feeling motivated, encouraged, any comforting or uplifting feeling just crushed. It feels impossible to not let flare ups crush it, and the internalized shame and grief that comes with that. I told myself it would be ok to take a break and I was gently guiding myself through by saying I will be ok and it is ok that I don't get anything done. But feeling motivated to get things done but not having capacity because of a flare up...lack of energy, among other things.

I rested and then realized I really should eat something, I was right. As I was getting my leftover dinner ready, I had a dizzy spell along with the other symptoms from the flare up. I worked my way through it but was starting to feel even more overwhelmed. 

A few weeks ago, I told my therapist that I had decided to shelve my emotional turmoil surrounding my endo diagnosis and everything that came with it and that I would just manage things as they come up but not think so heavily of the future surgeries and suffering because the endlessness and hopelessness with there being NO cure felt like too much to hold, so I have been working on keeping that put away until I am ready to deal with it but sometimes it comes out--compartmentalizing is a skill that needs to be practiced.

I sat down to eat but realized I needed to take my meds, when I went to get them, I had another dizzy spell and realized I was shaking and feeling weak, so I sat down and focused on my breathing. Still not feeling well, I went to try to eat but was feeling nauseous. I sat and checked in with my body. I was feeling defeated--why can't I always feel like I did on Monday, among other things. I started crying which escalated into sobbing, and then even more intense sobbing. Sobbing is grief and suffering leaving my body--it is helpful and exhausting.

Do y'all know how unstoppable I would be with eternal health (that would be my chosen superpower)??

        Or even just generally healthy like an average almost 30-year-old?

I am going to continue to find that balance and hold all the opposing truths/emotions as best I can while learning from everything that comes across my journey. I hope I can continue to stay motivated and not let these endo and POTs flare ups get me down (emotionally/mentally). I am going to keep practicing compartmentalizing and focus on finding a different endo specialist that is a better fit for me--don't even get me started on how overwhelming that is. I could sob just thinking about it.

I am going to focus on the tasks and goals in front of me as the way out of this long journey as well as lean on my people and skills along the way. 

I feel a bit better after the sobbing and writing, so I hope my skill usage helps me stay motivated enough...

Thank you for reading, it means a lot.

Surgery, New Diagnosis, and Nervous for Future

After nearly 3 months, I have finally been able to finish this blog journal entry about my surgery and recovery so far...I share to spread awareness, keep loved ones informed, educate, and destigmatize certain things like POTs, Dysautonomia, mental health, invisible chronic illness, etc. Thank you for the support.

My laparoscopy endometriosis surgery was on Wednesday, November 26th. Of course, the twin cities had to have a bunch of snowfall that stuck the night before and into the morning of surgery. This made my mom and I a little late to the check in for surgery since she had to clean the car off and go slow on the roads since they weren't full plowed. My mom and I left at 5AM and it took us 45 minutes to get there. That was a frustrating start to our very early morning but that is living in MN for yah.

When I arrived, I checked in, got gowned up, connected with the nurses via my Wicked compression socks, got poked three times until they could reach a vein, met with my surgical team, told my mom I loved her, got drugged up and don't remember making it to the OR. I woke up in recovery surrounded by nurses and other unconscious folks. I remember shaking uncontrollably as I typically do after surgery and my pain level was at an 8 with some mild nausea. I didn't want to play around with the nausea, so I asked for meds right away. I remember practicing some DBT mindfulness skills to help me get through those tough moments coming out of surgery and reorienting back to consciousness.

After I was more awake and stabilized, they wheeled me to a bathroom where my mom came to help me use the bathroom and get dressed. Then I was wheeled to a private recovery room with a useless ice pack. Once I was even more alert my mom told me they did find endometriosis and before she could get into the details of what was found--I sobbed feeling some validation and relief. 

I haven't really had the chance to process any of this due to how busy I have been. I told my mom I was ok and that I just needed to let it out a little bit, it hurt to cry since uncontrollable sob-crying uses abdomen muscles, and I have three incisions there--two on the left side and one on my belly button. 

I used my emotional regulation skills of containment so my mom could tell me everything in detail. Once my mom was finished, I sobbed again. At some point we were interrupted by a discharge nurse who asked if everything was ok and I said yes, I was told they found endometriosis. She left and gave us some time before another discharge nurse came in to help me get out of the hospital and back home. 

I was home by 2PM on the day of surgery. I feel extremely lucky and grateful to have my mom who is a homecare registered nurse look after me until the following Sunday, so for about five days until she had to go back to her life and I was on my own.

The first five days post-surgery went as smooth as it could have gone and a big part of that is because my mom took great care of me. We binged watched Stranger Things to get her caught up for the final season while I played games on my phone and she finished crocheting the queen-sized olive-green blanket in the video below! 

The post-surgery pain was rough in those five days but manageable because I knew it was temporary, I had plenty of distractions, and strong pain medications. My pain tolerance is pretty high since I have been living in chronic pain for over a decade but that doesn't make living with pain any easier.

Once my mom left, I was isolated for a while and fell into a bit of a depression. I was having such mixed emotions about my diagnosis but glad to have answers. I was a bit more accepting right away thinking I could handle anything that came my way and I focused on self-care, reaching out to talk to people when I had the energy, and binging watching shows. I had a hard time sleeping and was fatigued all the time, my pain and chronic diarrhea were still bad among other post-surgery symptoms. Resting, my cats, talking to people and having friends/family visit, and getting lost in a tv show is really what helped me get through those two weeks. 

Two weeks post-surgery, I was at my endometriosis (endo) post-operation appointment which brought more discoveries than I was prepared for. I learned that I have stage 2 endometriosis and that due to the extensive endo adhesions and scar tissue around my left ovary with it involving the ureter (the tube that connects the kidney to the bladder)--I have to see an endometriosis specialist and I need another surgery to free that up. And the adhesions that is obstructing the ureter could cause my kidney to fail if not treated surgically. My left ovary is still stuck to the side of my pelvic wall, but it is slightly more mobile than it was before surgery. My OBGYN is only a generalist one, not a specialist so she said there wasn't much she could do.

I started taking a new treatment but won't know if it is working until mid-late march. I am going to start pelvic floor PT soon and seeing an endo specialist at the end of February. 

As I finish writing this post, I am three months post-endo surgery and I don't have the right words to express how difficult it has all been. I tried to prepare myself for this and I don't think I ever could. I will have to come back to this in more detail in a later post but to give you all a picture--my chronic pain hasn't gotten better, chronic diarrhea is still happening although it has slightly improved, and fatigue has never been worse. POTs and endo flares feel like they are happening constantly. Pre-syncope spells are more frequent; I fully passed out for the first time in a couple of years recently--so fucking scary and grateful that I didn't injury myself. I have asked myself multiple times recently if I should go into the ER, it never feels worth it. What can they do for me...???

The feelings of overwhelm have never been so high--not to mention living under domestic terror occupation by the federal government, with trying my best to support my clients, learn how to be a therapist through my clinical internship, get to all my work meetings and supervisions, while constantly trying to catch up with paperwork and homework assignments....I have been reaching crash outs basically daily. I have been crying and sometimes uncontrollably sobbing daily and crying myself to sleep nearly every other night. Crying is a very helpful emotional expression and outlet, and I kind of wish I did more of it. I can only do it when I am alone basically, it is kind of annoying but shows how strong my compartmentalizing skills have gotten.

Getting another chronic health diagnosis is so complex--I am happy to have answers, my pain and other symptoms are validated, I know what my (limited) course of treatment options are and, yet it feels like the beginning of a long stressful and hopeless journey in a lot of ways too. Endo does NOT have a cure and treatment options are not very optimistic whatsoever. 

When I started writing this blog journal entry back in December 2025, I titled it "Surgery, New Diagnosis, and Moving Forward." I was adamant on being hopeful and optimistic with a pinch of realism. I decided to change "Moving forward" to "Nervous for Future" because trying to be hopeful and optimistic feels like such a fucking let down with everything I have been through. It is ok to not be ok. It is ok to be nervous and scared and want to scream. I really don't know what is ahead of me, this just feels like a very overwhelming beginning to a long stressfully painful journey. 

You really know who your people are when they show any kind of support during surgery recovery and navigating complex health issues. I want to take a moment to thank all the people that reached out to me in anyway during my recovery and post-surgery. A big thank you to the family member that gave me a shower chair and loaned me a walker--so extremely helpful! And a special thank you to the friend that has been coming to my apartment 1-2 times a week to help me by cleaning my apartment. That has been a huge help for me!

I will keep leaning on my people, using my skills, and pushing through until I need breaks. It is ok to feel stuck, at a breaking point, like nothing will get better, to feel hopeless--nothing is wrong with that. This life is so fucking hard, and it feels impossible frequently--it is how we bring balance back to our life that matters. I don't know how or when exactly that will happen, but I am sure it will. It is about holding both the joy and love with the fear and suffering. Balancing acts are never easy...

I made this short video of my surgery and recovery to help with spreading awareness through visual means too! 

Navigating New Health Issues & Upcoming Surgery

A week from today, on November 26, I am having surgery to figure out what the hell is going on with my body. I have been navigating a new health issue for a while which has been emotionally and physically exhausting. My GI symptoms had gotten worse at the beginning of 2025, and I have always had issues with my periods. Then in late spring 2025, I had the worst period I have ever had--the period from hell.

That period brought me extreme GI distress, bowel pain, nausea, and severe cramps in my lower abdomen and lower back that went into my hips and down my legs. I was incredibly weak and dizzy, this period put me into a full POTS flare up as most of them do but not to this severity. Even though I was feeling completely horrible, I forced myself to go to my graduate school classes in person for a few hours. I spent most of my first class in the bathroom on the toilet feeling like my bowels were on fire and wrapped in barbed wire.

During the last hour of class, we broke into small groups and a classmate/friend of mine performed Reiki on me which was very helpful. I did not go to my second class; I went home and slept the rest of the day. What is scary about days like this, is that I am feeling so sick that I am scared to drive and have to wait for my symptoms to improve before I can hit the road. I felt trapped, and it sucked.

Since at least spring 2025, I had noticed uncomfortably constant bloating and experienced right side and lower abdomen pain that was not with my period. That pain would be dull and achy or would bring me to the floor in agony--no in between. I was getting worried something else was going on especially with how many medications (including a steroid) I am on, I thought my medications were starting to impair my kidney function. I was wrong. I'm NOT the doctor as Alanis Morrisette sings.

At the beginning of summer, I saw my primary doctor, and she was able to refer me to an OBGYN who I saw in July about severe period pain and other symptoms I was experiencing. She recommended I get an ultrasound to see if something was going on. I scheduled it and when the day came, I had a bit of a PTSD anxious reaction. Being a survivor of sexual traumas, I wasn't feeling physically, mentally, or emotionally ready for a transvaginal ultrasound. I hate how my past traumas and shame still show up in my life sometimes.

At the end of August, I received a therapeutic massage from a friend/classmate with many years of experience with somatic and body healing work. At the beginning of my session, she asked me if she could do some craniosacral therapy, which I have never done before and wasn't quite sure how it works--still not entirely sure. From my understanding, it's almost like she did a body scan or connected with what she called my "inner physician." I laid on my back, and she used her hands to cradle my head. She said that what she was about to say was going to sound weird--I am usually always up for weird. She explained that my internal physician was trying to communicate with me and I wasn't listening. She encouraged me to listen to it and that an organ(s) were speaking to me. She told me that a lower organ(s) like my kidney, liver, or ovaries have been trying to get my attention. I reminded her about the horrible period I had during one of our spring classes since she was the one practicing Reiki on me. I told her what I just explained above, and she encouraged me to listen to my body and to my inner physician. She encouraged me to reschedule the ultrasound.

I got my first ultrasound the first Friday after seeing her not just because she encouraged me but because the side pain I had been experiencing on and off all spring and summer came back and was exponentially worse and consistent.

In September, I had my very first transvaginal ultrasound which was very triggering for my body. I intentionally took the rest of the day off knowing it probably would be and glad I did. It was so uncomfortable, triggering and my nervous system was so confused and a bit in crisis. I took an epsom salt bath as soon as I got home. Afterwards, I tried to get some busy work done as a distraction until it was interrupted by getting the results from MyChart. 

The ultrasound had shown two ovarian cysts on each of my ovaries with one being nearly 5cm. With repeat ultrasound recommended 6-8 weeks later. I had such mixed feelings. I was happy to know right away a piece of this puzzle and that my experiences were validated by those results. In the past, I have not been believed, and it took me years of advocating for myself to get my POTS diagnosis. It felt very overwhelming and a form of relief. Also, I did not want to start my final year of graduate school trying to navigate a new health issue.

I won't get into the details of the shitty communication from the nurses and doctors the following week because it is upsetting. I try to give them the benefit of the doubt due to them being overworked and working within a shitty oppressive system.

I scheduled my follow up ultrasound and anxiously awaited its arrival and did a ton of research on ovarian cysts, what causes them, and other reproductive health issues. I learned a lot, and I tried not to worry about a cyst bursting or twisting my ovaries. I tried to focus on paying more attention and attuned with my body. The uncomfy constant bloating continued as well as other symptoms of right side and lower abdomen pain, intense GI distress (basically diarrhea all the time, more nausea), issues with urinating, sciatica pain radiating down my leg, even more of a lack of appetite, fatigue, etc. 

With coping and planning ahead, the second ultrasound went much better for me physically and emotionally. It helped that I knew what to expect and had the same lady do the ultrasound as before. My body was not as triggered, and my nervous system wasn't activated. This time I had to wait a few days before seeing my results which showed one cyst gone and the other over 4 times as big as before. I saw my OBGYN 5 days after the ultrasound to discuss options.

We decided to do laparoscopy surgery to see if I have endometriosis and scar tissue which would need to be removed, and to drain/remove any cysts I have. Ultrasounds do not show everything, and surgery will give my doctor access to other organs to do some investigating. I will be shocked and feel a bit defeated or hopeless if I don't have something going on other than ovarian cysts. And if I do have endometriosis, it will be another chronic health diagnosis and illness I will learn to live with and manage. I just want to know what the fuck is going on with my body. Answers help us find solutions to help us manage and function better.

My mom will take me to and from surgery and will be my support for about five or so days, I am feeling incredibly grateful for her. I will be taking at least two weeks off from work and hopefully return to work by mid-December strictly working from home having virtual meetings. 

My recovery time depends on what they find and how much they have to cut out of me. The more they have to cut out, the longer recovery time. It can be anywhere between 4-12 weeks. It is wild and difficult to navigate and prepare for that. 

Throughout November, I have been working my ass off to catch up and stay on top of work and internship tasks, as well as everyday life things. My schoolwork is the only thing that I have been putting off and has been the least of my priorities, and I am hoping to get as caught up with that as I can in the next week. My work supervisors, internship supervisor, professors, friends, some family, have all been incredible supportive which has helped me feel confident in myself for preparing for this surgery and the possible long recovery afterwards. I hope to have friends and some family check in with me and visit me during the first weeks of December to help keep me distracted, looking forward to things, and help take care of me. 

I was really hoping I didn't have to deal with all this right now, especially during the busiest part of this graduate program--and I know I will be ok with my supports and resiliency skills. 

Thank you for being here, supporting me, and I will keep y'all posted.

Part 2 of My Life Updates: 2025 So Far...

Welcome! This is Part 2 of my Life Updates to officially get caught up with what has been going on from my life experiences to my blog to spread awareness and much more!

Check out Part 1 of my Life Updates: 2024 for some context to this post! This is a continuation of some of the 2024 updates as well as new updates!

I am going to jump right into it! Thank you for coming back, I am beyond grateful for your support! Please show it by commenting and liking!

The beginning of my 2025 was polar opposite to my 2024 start. I was isolated due to becoming extremely sick with a secondary lung infection after contracting bronchitis. It took me months to fully recover since the illness caused more frequent POTs/dysautonomia flare ups. During those months, I felt very hopeless and fell into a deep depression due to the isolation and debilitating symptoms I was trying to manage. I was able to do the bare minimum by working from home and taking a lot of PTO. 

My spring semester of graduate school was well under way. I was so sick I didn't have the energy to do my first online forum posts, and I missed the second weekend of classes. By the third weekend of classes, I had flared up towards the end of class so bad I almost fell from intense presyncope/dizzy spells twice on my way out of the building. I had to catch myself. I felt incredibly weak, shaky, dizzy, fatigued, and was grateful for the disabled parking permit so my walk wasn't too far. That is when I decided to start using my cane when going to classes and on a more regular basis as needed to help manage my dynamic disability.

What someone having a severe depressive episode & living
with dynamic disability can look like...taken in 02/2025

My cane helps me so much! I have had my teal sparkly cane since 2018. I mainly used for hiking and some walks but had hardly ever used it because of my shame around using it. I had some conversations with some close friends, some family, a couple of professors, my therapist, and myself about why I think it would help. I received encouragement and ultimately told my shame to fuck off--that it doesn't matter what people think, if using a cane will help--USE IT! I still have to remind myself when that fickle bitch shame starts bubbling up. 

I got a new black cane for all occasions as a holiday gift from my mom when I told her I wanted to bring one on the study abroad trip, that I ended up not going on--I will get to that later. So, I had a slick black cane that I kept in my car and started using any time I was going to classes, doctor's appointments, and other times as needed for support.

My cane helps me pace myself, and it supports my balance, dizziness, weakness, and gives me extra support with my chronic pain flare ups too. My confidence using it grew as I used it more and more. I got much support from friends, some family, classmates, professors, etc.

Even with the extra support from the cane, I doubted my ability to finish my spring semester. That doubt had already crept in before the semester began and as it went on, it felt like I was still recovering from the lung infections and was dealing with GI flare ups constantly for two months before it started to slowly let up. My GI issues in general have exponentially gotten worse over the past few years. I was diagnosed with irritable bowel syndrome (IBS) in Spring 2025 with my GI issue history and having diarrhea for two months straight causing me to have more POTs flare ups due to dehydration. Which I believe led to increased weakness and cramping in my legs that I was experiencing. I wonder if my IBS symptoms are connected to another health condition, but I will get to that in my next post. 

In January 2025, I had planned and committed to go to South Africa for the MSW study abroad program. I have never been able to travel outside of the United States, and it has always been a dream of mine to study abroad, which I know I can do on my own, however, opportunities like this don't come often in life. By early Spring 2025, I had to revoke my spot for health and financial reasons. The health reasons being my updates above including not really having much PTO left to spare. 

Financially, I had to get a new (used) vehicle since my old one that I had for nearly 8 years broke down. I drive a lot for work since I meet clients in their homes all around Hennepin County, so getting a reliable vehicle was a necessity to keep myself afloat. Plus, I was moving into an apartment by myself after living with my brother and his girlfriend as roomies, so my rent and bills increased more than a few hundred dollars a month. 

Again, I felt completely and utterly defeated by the limitations of living with incredibly challenging and dynamic physical disabilities. But when I made the decision that I wasn't going on the trip--I felt relief as well. I have grieved and sobbed over not being able to go on that trip. I was able to talk with friends and a professor that went on that trip to hear their stories and live vicariously through them. I hope to travel abroad one day.

As life and the spring semester moved forward, my mental health was at its worst. I felt so defeated by my POTs limitations and restrictions to my life that I continued to doubt my ability to finish my third year of grad school. That doubt made me wonder what the point was, why continue school, why continue living if I can't even live my life? Suicidal ideation was creeping in, lingering, and fully settled into my life.

March 2025

I have had so many moments of feeling hopelessness and helplessness, like my illness has control of my life and it is so scary and valid. Living with a dynamic chronic illness is so incredibly difficult. It is the hardest thing I have had to continue to face in this short life.

There was so much to juggle in spring 2025, due to my continued right hand, wrist, and pain from my fall in April 2024, I was referred to a physical therapist that specializes in hand therapy. I saw her a few times, learned some exercises and where I learned that I do have a pinched nerve in my right wrist. She gave me some helpful advice and showed me a new brace that would help support my tendons by providing support. It has helped a lot. I continued to have pain though and didn't have time to schedule another session with her, so I messaged her. She replied with a referral to a hand specialist. I scheduled that for late summer.

May rolled around and I was able to finish my third year of grad school somehow with the support of friends, professors, classmates, etc.! You all know who you are! 

Folks were chatting about how much they were looking forward to summer which only fueled my anxiety about how I was going to manage my POTs when the heat comes around. Getting over heated causes POTs flare ups because my body can't regulate its temperature so when it gets overheated, I have to regulate it myself and even with doing that I can still get a flare up. 

The first heat wave hit in May, it was about a weeklong, maybe longer. I got overheated during a work meeting which triggered an anxiety attack at work. I felt like I needed to advocate for myself, spread awareness, and just get how I was feeling off my chest. I spoke to my supportive supervisor about what was going on and why I was anxious. My supervisor asked me if my anxiety and fears were based in reality or if I was having a trauma response. At the time, I said it was based in reality, which it was. But it was also a trauma response from the PTSD that comes with living with POTs and everything that comes with it including medical trauma. 

The next week I spoke with both of my wonderfully supportive supervisors of over two years about what happened and my reflections. I thanked them for their support, accommodations, and for helping me name my POTs, chronic health, and medical Traumas. Naming it helped me cope ahead and manage my mental health which helped me manage my physical health and vice versa throughout the summer and into fall. 

For years, I have been wanting and needing to do EMDR therapy to help me process other traumas. However, with having PTSD and anxiety about my experiences living with POTs, I decided to start EMDR to reprocess my disability trauma. I did a session over the summer and wanted to do more but didn't get around to it with the other things that came up over the summer. I think the first session went well and I hope to do at least one or two more before the end of the year.

With my hand and wrist injury still bothering me, I was referred to a hand specialist who was magnificently kind. I got x-rays done. I was told I have pinched nerves in my wrist and elbow, that I should continue wearing wrist braces as needed, and also wear an elbow brace at night and when my nerve is angry. I did not want to wear an elbow brace for a few reasons, one of them being, that I wouldn't get any sleep while wearing it. Having continued nerve pain from my fingers to my elbow and tendon pain and issues has been frustrating to say the least. I continue to try to manage that pain and continue to wear compression gloves and wrist braces. 

Overall, the summer was decent compared to the hell so many previous summers have been and a huge part of that was naming the traumas and talking about it in therapy. My depressive symptoms were relatively mild over the summer which was the best it has probably ever been. 

My 29th birthday was coming up, and I wanted to celebrate going into my final year of my 20s with how much growth and healing I have done since the beginning of my 20s! The plan was to have a staycation, avoid the heat, watch some great TV/movies, etc. with my mom. I took Monday off since it was my actual birthday to get brunch with a friend and have dinner with my brother and his girlfriend. The day my mom came up to the cities to visit me; is also the day our family cat Oliver had to be put down due to sudden and severe illness. Due to the sudden and unexpected nature of this along with the timing, I had the worst birthday, and it was the most depressed I had been all summer. I was still able to spend the weekend with my mom, and we had a relaxing weekend for the most part. I think I just emotionally numbed out my grief after all the sobbing I had done the day he died. My brother was so depressed and shocked he couldn't celebrate my birthday at all with me this year. I understand and it still hurts. 

Mom & I in August 2025

I finished out the summer by starting my clinical MSW internship orientation/trainings and having some friends stay with me on and off as they moved their adorable family to the cities. It was so healing and lovely to have them stay with me and build our bonds even stronger. I am so incredibly happy to have them close to me again--they have been my saving grace lately.

After Labor Day, I began my final year of my MSW program and got more into my internship. It has been such a wild ride, and I can't believe how far I have come with this program and how much I have learned and grown. It has been incredibly challenging to juggle working full time, getting my internship hours/experience in, attending Saturday classes, completing homework assignments, being social, and taking care of myself. 

One of my goals is to investigate and reflect more on the connection of trauma and disability, body and mind, etc. Seeing more patterns with the interconnectedness of mental and physical health is so important for growth and healing. I am hoping to understand more with researching more and learning more in school and at my internship where I have been shadowing and co-facilitating a weekly Trauma Skills group and started practicing individual outpatient therapy. 

Life is all about finding your people, making connections, enjoying life with them, and supporting them. Finding the right people in life is life changing! People living with disabilities need friends and a community of people who also live with disabilities. I hope you find your people that uplift you and support you--it improves quality of life. 

Life is so fucking difficult especially when we are learning how to live with suffering while also healing from our past traumas and chronic mental and physical illnesses. All humans suffer to some degree, and we all need to learn how to heal ourselves. Sometimes that means being a little silly, talking, processing, exploring clinical options, finding our people and building community, learning new skills and practicing them daily, adjusting your routine, finding new ways to take care of ourselves, etc. 

If you don't know where to start, start with self-compassion. find ways to empower yourself and implement self-compliments and positive self-talk. Be proud of yourself for surviving and wanting to heal. Everything takes time especially healing, growth, and rewiring our brains. Or pursue a passion, find something you are passionate about and start to find the path to reach that goal and heal yourself and learn along the way! Take care!

With hope & in loving memory of Oliver,

Shelby

Oliver & I in October 2024

Health Updates Coming Soon...

Part 1 of My Life Updates: 2024

It has been too long since I have posted an update on my blog. Part of it is because I didn't think anybody really read my blog and my life got even busier. Plus, I post most updates on my personal social accounts to keep loved ones informed while spreading awareness. 

Please comment, share your story if you're comfortable, show me you're interested in reading what I have to offer and I will continue to post shorter (than this post) updates more frequently!

But here I am, back again and glad I am using this outlet at least once more before I get extremely busy again. Although I haven't been posting on here, doesn't mean I haven't been working on pieces of writing--most very short with one extremely long one that I started a year and a half ago. 

As I was writing this I realize how much has happened since my last post. I did my best to summarize but I am a storyteller and love expressing myself through journaling and blogging, it is a form of healing for me. So I decided to make this update a two part update. I can't make any promises when Part 2 of My Life Updates: 2025 So Far... will be coming out but I am hoping it is before September! 

Here are my 2024 life updates and milestones since my last post: 

My 2024 started off really well! I went to Arizona to visit family with my mom and two younger brothers. It was my first time visiting Arizona, and first/last time visiting my grandparents place since they sold it the following year. I am so happy I was able to visit them at their place in AZ at least once. 

My mom, brothers, and I took a few days during out trip to spend in the stunning Sedona, AZ. On our last day in Sedona, my brothers and I peaked Bell Rock. I wasn't sure if I was going to go on the hike to Bell Rock in the first  place. However, I decided to push myself and manage the consequential flare up later--it was totally worth it. I used my cane for support. As I was hiking, I was dizzy, out of breath, shaky, weak, with tachycardia my entire way up. I took my time as my brothers surpassed me, but they waited for me at the top. When I made it, I immediately took my beta blocker, drank some water, and enjoyed the view with my brothers. My brothers expressed how proud they were of me and said they weren't sure I was going to be able to make it. I felt the same way and felt seen/heard by them. We got some amazing photos, as you'll see below! I nearly passed out on the way back to my grandparent's place--still worth it! That high was just the restoration of spirit I needed! I carried that euphoric feeling with me for a while and still try to find it! Can't wait to visit Sedona again!

After my trip I returned to my work as a Children's Mental Health Case Manager for a non-profit and to my generalist internship working with families in the Ramsey and Hennepin County communities by offering them resources, parent education, harm reduction, and support. I then began my Spring semester of my second year of my Master's in Social Work program.

As April approached, I took the time to cope ahead as best I could. There are a lot of trauma anniversaries for me in April and I was going with the approach of "let yourself feel emotions without shame, give yourself grace." I tried and succeeded for the most part, however April was more challenging than I anticipated. I lost my insurance since the COVID extension with the state ended. I had to apply for insurance through work and that wouldn't begin coverage until May. So, I didn't have insurance for the entire month of April. I was struggling to find balance with managing my POTs symptoms, working full time, going to classes on the weekend, keeping up with assignments, and getting my internship hours in. During the first week in April, I had a horrible flare up and nearly fainted causing me to lose my balance and fall, injuring my right hand, elbow, and wrist. 

Thinking I had only sprained it and have sprained my wrists before, I splinted my right wrist in a brace, tried to ice it when I could, and took Epsom salt baths nightly to help. It got better until it got worse. The first flare up hurt so much more than the initial injury, it was awful. I started splinting it again as needed which was pretty constant during the summer of 2024. I finally went to see a doctor and they thought I pinched a nerve in my wrist and ordered an MRI. 

Over the spring and summer, I noticed more issues with my IV saline infusions and them being a bit counter productive with getting a few clots, dealing with pain that seemed to get worse causing muscle spasms and cramps in my back and tension in my shoulders, neck, and chest. My blood pressure was more constantly on the higher side so the infusions seem to only increase my already high blood pressure, hence it being counter productive.

In the midst of all that I was able to successfully finish my generalist MSW internship and Spring and Summer semester of my second year. Making me at the half point of grad school! So proud of myself for making it through a very hard time mentally, emotionally, and physically while able to serve the community.

Our family cat of 13 years, Trixie died at the end of July in 2024. That being the first major pet loss I had experienced. Trixie was the first cat that was ever in mine and my family's life. It hurt deeply to lose her--she was very sweet, sassy, independent, graceful, and silly.

My depression and anxiety get triggered by various things like being isolated in general but especially when my POTs flares up. Having to take care of myself when having flare ups prevents me from enjoying being with friends, attending events, being active, etc. Reaching chronic illness fatigue which is being tired and burnt out with having to constantly manage unexpected and debilitating symptoms--it feels like I can't move forward sometimes and like I won't ever be able to find balance. Having a death or grief spirals or shame spirals come up in life can put me into a depression sometimes, or at least bring me deeper into the depression depending on many factors. Lastly, sometimes trauma triggers have me spiraling deeper into a depression. I am sure there are triggers I am not thinking of right now.

Depression and anxiety was at an all time high (or low depending on how you look at it) in summer of 2024. Summer heat causes flare ups which causes more social isolation and feeling chronically ill. I was reaching chronic illness fatigue and dealing with an injury and not feeling like I could finish my education. Finishing my internship and second semester of grad school felt impossible. My depression continued to spiral and I wanted to kill myself with getting back into that mindset of having those intrusive negative and self-destructive thoughts increase in intensity was hell! I made it through though as I always do! I am extremely proud of myself and learning from my past all the time as well as doing my best to improve the present and future. 

Photo below is me on my 28th birthday trying to find some joy!

At the end of summer, I continued to have port/cath pain, more frequent muscle spasms in my back, and infusions continued to seem unhelpful, so after 3.5 years of having a port/cath for IV saline infusions--I decided it was time to get the port/cath removed. 

My surgery was in middle of October. It went well and I am grateful for the support of my mom, friends, family, coworkers, and supervisors. I feel like I am still recovery with pain and muscle tension but no more frequent muscle spasms and cramps. I still have pain where my port/cath were sitting. I have an indent in my chest where my scar is which are still healing. I have moments of moderate pain where it used to sit. I am so glad it is out!

A few days after surgery, my family and I learned that a young family member died. My beautiful second cousin who was months away from turning 30. I drove nearly three hours to attend her wake and funeral a week after surgery, which was obviously an emotional time for everyone that loved her. For me, is was especially difficult on my body with living with POTs while also recovering from surgery, traveling, and not getting much sleep. That entire weekend I was entirely emotionally and physically fatigued. I am glad I was able to pay my respects at her funeral. 

Attending a 29 year old's funeral as a 28 year old with consistent months of severe depression and suicidal thoughts was a devastating and humbling eye opener for me. I encourage all my readers to see a therapist if you are not already for any reason but especially if you are having thoughts of suicide. Get help, you are worthy!

Throughout the year I was able to spend time and making good memories with friends and family, but with how busy I was in 2024. It was very annoyingly difficult to find the time--make time for the people you love! We truly don't know how long we have on this earth!

With a ton of highs and lows, I somehow made it to the end of 2024. During the entire last week of 2024, I was extremely sick with a lung infection, isolated, and watching Penny Dreadful for the first time.

Stay tuned for Part 2 of My Life Updates: 2025 So Far... 

Take care!

Goodbye 2023, Hello 2024

It's about time to say goodbye to 2023, for many of us that means reflecting on this part year's success, challenges, moments of joy and sadness, and I find the need to reflect on my resiliency and the supports in my life. Without them, I wouldn't be.

As cliche as that sounds it is true, who and where are we without others?

I know for a fact I'd be absent from this life.

So thank you if you're reading this, it means you care. And thanks to the folks that haven't read this who have supported me in other ways. You all know who you are, we have a mutual care for each other and mutual care makes the world go round.

The past couple of years I have been writing these year end reflections. I find it helpful for myself and enjoy sharing my thoughts with my loved ones. 

Many amazing things have happened this past year in my life. Many challenges too. Such as life.

In the Summer I finished my first year of the graduate social work program at Augsburg with straight A's. Built up friendships and rapport with social work peers, along with building up my confidence to learn and practice again in a school environment.

This Summer I moved into a new apartment with my lil brother and we have been working on building our relationship and have been getting along for the most part. It has been a lot of fun!

This Fall I started a foundational micro social work internship at Family Wise in Minneapolis. I am learning a lot, building relationships with peers and supervisors, and building up my skills as a social worker.

Throughout the year I have spent time with family and friends! Always enjoyable and it improves my mental health to be social. With challenges of depression, anxiety, PTSD, and physical chronic illnesses I frequently find myself being isolated which impacts my overall health in negative ways.

There was a time this fall when I felt extremely isolated so much so that I started to write again. So isolated that even being around other people wasn't helpful. That feeling continues to linger but it isn't taking up my headspace like it was. During that time, I wrote about what it's like to live with chronic health condition day to day. I felt the need to write that all down as my flare ups were feeling completely unmanageable along with my feelings of hopelessness and defeat. That's when my depression and anxiety got comfortable and my symptoms of it were more of an everyday thing. It's a bit more manageable for now.

Overall, managing physical health symptoms ebbs and flows, it is honestly difficult for me at times to hold on to any hope since this is a lifelong illness. My radical acceptance of that also ebbs and flows if I have truly accepted that fact. The fact that my body's autonomic nervous system is so annoyingly touchy and can basically ruin my day and plans--is why I have feelings of hopelessness, defeat, and frustration. I try to reframe things and to see the positives that come from having a chronic health condition but can't make that happened most of the time. It is insurmountably difficult to life with dysautonomia daily. I don't know how I do it.

If I had to answer how I do it, it is with some patience and support from others, along with some mindfulness, other DBT skills, and a dash of resilience.

This year I was able to check off almost all of my goals for the year. These are my hopes for 2024: my Arizona trip with family going well (in terms of managing my physical health symptoms), finish my internship and second year of grad school out strong, have more social time with friends/family, better management of Dysautonomia, and to just do more things that bring me joy. 

Another thing that I have been trying to work on in 2023 is putting myself first. I have to take care of myself first if I can and am able to take care of the ones that I love. I hope my loved ones can do the same for themselves too!

My hope is that everyone is reflecting on their resiliency, hopes, dreams, challenges, and areas of growth for this next year so we can collectively work on bettering ourselves to better this complex world. We are a huge part of what makes up this complex world and us humans have such a hug footprint on how this world continues to spin on. We all need to keep reflecting on that and our egos/selfish tendencies. Growth is needed everywhere and within everyone. 

Cheers to growing up a little bit more in this New Year and I hope y'all have a safe, happy and health New Year!

With light and love,

Shelbs

A Year Without Self-Harm

 TRIGGER WARNING: self-harm, depression, rape, PTSD

I have been living with depression and anxiety since I was about ten years old--at least that's the earliest I can remember any symptoms. My mental health is something that fluctuates a lot. It exponentially got worse as I was growing older and experienced more trauma. 

I didn't start self-harming until I was in college after I was raped. I found many ways to harm myself and became more self destructive. In some ways, I didn't even realize how harmful I was to myself until I started going to therapy regularly. 

I had convinced myself that self-harm was the only way I could feel anything at all. I was emotionally numb and had fallen into a deep deep sadness and shame. My PTSD and mental health had gotten so out of hand, I felt self-harm was the only way I could feel and see the pain I was going through. I felt like I deserved it. Once I started I couldn't stop, or at least thought I couldn't stop. I was addicted.

I don't know the exact date but last August was the last time I self-harmed. I am very proud of myself for achieving something I never thought I would. I went through a lot to get here. I had to use many DBT skills in order to fight the urge to harm myself--it was not easy at all.

Achieving a year without self-harm is a huge step towards my mental health recovery. I was in therapy twice a week (individual and group) for nine months and it was a big commitment and tough work. Now I am down to once a week. I had to quit group therapy but that's an entirely different story. 

Before I started DBT and group therapy, I could say that I was committed but I probably didn't mean it. Or I meant it but didn't think I would actually get better--be a better person, a person without self-destructive behaviors. I still have self destructive thoughts and probably some behaviors but I am doing a much better job of managing and recognizing them without putting them into action. For example, I have not been drinking any alcohol for almost six months--which I consider a self-destructive behavior. 

In the mental health world, to heal yourself, you need to rewire your brain. When I first heard this, it made sense to me but seemed impossible for me. I have learned in the past year that it was possible for me and requires a lot of work like using DBT skills, asking for help, and practicing self-care everyday. I know I am not done with my recovery and will always be working on bettering myself. 

To rewire the brain, you have to come out of unhealthy thought and behavior patterns. I had to rewire my brain not to want to hurt or destroy the body it inhabits. I had to rewire my brain to redirect negative thoughts about myself. Learning this skill was not easy after the years of torment my brain had gone through and the many unhealthy patterns it had fallen into during and after trauma. I was almost in a constant state of crisis and survival. I had to learn how to come out of that so I could live my life.

Writing this blog post honestly astonishes me--that it has been an entire year without self-harm. I am not going to lie to you, I have thought about self-harm a lot in this past year. But I haven't thought about it everyday, those negative self-harm thoughts have become more quiet and faded away. They have basically become whispers. I still have really bad days when they become screams and I haven't given into those thoughts. 

Part of the problem solving is realizing that they are just thoughts--thoughts come and go. They do not have to be put into action. You can have a thought and just let it go--like it was never there, or you can take note of it. You can talk about it in therapy and learn new skills about how to keep that voice quiet and learn how to distract yourself. Or call someone for help. Distractions help me the best! Talking to friends and family that want to support me or finding something fun to do with someone I love helps me. Getting lost in a show, doing chores around my apartment, and being creative are things that help me too.

Now the challenging part for me is to continue this life without self-harm. Like any addiction, you have to take it one day at a time. I have to keep using these skills I have learned and keep leaning on my loved ones for support when I need to. 

Yesterday, I finished Season 5, of the hit show Better Call Saul, there is a quote about living with trauma in the last episode. Mike, a fan-favorite character says to Saul, "Here's what's gonna happen: One day you're going to wake up, eat your breakfast, brush your teeth, go about your business. And sooner or later, you're gonna realize, you haven't thought about it. None of it. And that's the moment you realize that you can forget. When you know that's possible, it all gets easier." 

When I heard this quote I knew exactly what he meant because I have felt that way. I have realized I can live my life with the trauma I have endured. I know I will never forget what happened to me and how I have been treated in this life. But I will have moments or even days where I forget my trauma because I am living my life for today and embracing possibility. 

**You are not alone, someone loves you, and you deserve the world. Please reach out for help if you need it, you do not have to fight this fight alone. 

If you are having thoughts of self-harm/suicide call your therapist or the National Suicide Hotline #1-800-273-8255

If you have experienced rape/sexual assault call the National Sexual Assault Hotline #1-800-656-4673