the beginning: compression gloves

May is Arthritis Awareness Month. It is also Mental Health Awareness Month, and the two can absolutely go hand in hand. While rheumatoid arthritis is typically acknowledged in September, I have been wanting to share my story for too long.

It’s been a weird past 3 years. I share this for awareness and to educate others that yes, young people live with arthritis.

In the fall of 2020 I was living in covid isolation in Hawaii when I began struggling with joint pain/deformity, skin problems, heart problems, in addition to extreme eye sensitivity.

It wasn’t until spring of 2021 when I was diagnosed with rheumatoid arthritis (RA) prior to a heart surgery. I never made the connection that the reappearance of my heart condition (WPW) was related to this inflammatory disorder. There are many different types of arthritis. Rheumatoid arthritis, however, is a chronic autoimmune disease that affects the joints as well as organs.

I could not say “I have rheumatoid arthritis” for the longest time, because I had been in denial that I had it. I live with C-PTSD and I am always aware of how my illnesses coincide with the stressors of my trauma. I thought if I managed my mental health, worked harder in therapy (whatever that means), had more positive thoughts, and ate healthier, that my arthritis would simply go away. That was not the case.

When I was first diagnosed I cut my hair very short because I couldn’t hold a hairbrush. I could barely turn a doorknob, and became frustrated at how long it would take me to key into my apartment. Very few shoes did not hurt me. I wore sunglasses indoors, and blue light glasses. When my heart condition worsened, so did my other autoimmune conditions. I became desperate for a new prescription of steroids. I could not walk or use my hands without them. My fingers changed shape and ability, my hand developed a ganglion cyst, I lost too much weight, and none of my clothes fit me.

I initially tried one medication that gave me the worst nausea and brain fog that I could not finish my sentences. I then tried injections of a different medication last spring, which also brought horrible results. I left work, unable to feel my arm aside from a tingling sensation. I went to the ER because my doctor expressed worry that I was having a stroke. Thankfully, I wasn’t, but was told to stop the med immediately.

Rheumatoid arthritis has certainly given me embarrassing moments. When I was living alone, I was unable to ask for help when I couldn’t open something. I am stubborn. I used my teeth too many times, until I held a piece of my front tooth in my hand. I got a filling, but it was certainly a wakeup call. Several times, my arm had been stuck in a bent position with a swollen elbow for a full workday and I could not straighten it. When I want to hide my knee braces, I try to wear skirts or baggy pants. Looser clothing also helps because tighter pants tend to suffocate my swollen knees. I love baths, but I also would feel so defeated when I had trouble getting out of the tub.

When I started my job, I was required to take a CPR test. I had an anxiety attack beforehand. I’m sure very few people were crying before their CPR test. I did not know how I would pass, as my wrists would not allow me to put pressure on my hands. The instructor was understanding, I did pass the test, but I know the light on the dummy did not appear once.

I would sob every single time I went to the rheumatologist. Every treatment method recommended to me has side effects, many that affect my other health conditions. I had listened to doctors tell me that without treatment my body would fail me more, and I would be handicapped before my old age. I had held off on trying a new medication for so long, because I was terrified that I would need another heart surgery. Many people do choose to manage their arthritis naturally. For me, I’m not sure that will help enough.

hopeless rheumatology visits

Where I am today:

I found a new rheumatologist, one who doesn’t make me cry, and provides hope that someday I will live life without feeling like I have rheumatoid arthritis. I am finally on a medication that seems to be working, I am on a much lower dose of steroids, and I hope to be completely off of them by next year. I am not where I started, but I am not where I want to be. All I can do is find things that help, even if they are not cures. I have learned other ways to manage my RA. I have found that swimming helps, more omega3’s in my diet and anti-inflammatory foods help. I also advocate for myself and work from home when needed.

I do get sad quite often. It is hard not to get frustrated with my body. It is hard to tell others, “I can’t do that.” I miss not having to explain myself. I miss running. I miss riding a bike. I miss the little things like being able to put my hands flat on the ground and support myself in yoga poses. I don’t like the sound of my knees cracking, or being unable to walk downstairs after a day of ordinary movement. However, I know I’m not the only one. I know that this disease is only teaching me how to take care of my body and make smarter, healthier decisions. My body reminds me it has been through a lot, and it deserves care now. I’m learning that I can still live a full life- even while navigating RA.

This post will address a few things:

1. How weather and changes of seasons influence my arthritis symptoms

2. An update on my arthritis lately

3. insecurity around wearing what helps my symptoms

Many people know that weather can impact arthritis. For me, I never really noticed this because I have struggled with my arthritis every day since I was diagnosed. I haven’t been able to go without prednisone. I do not plan to be on it forever, but until I am able to find the right treatment for me, this is working. Some nights I will try to skip taking my prednisone, but I will wake up in the middle of the night. I’ll be in full body pain, which reminds me that I cannot go without it. Lately I have been able to get away with a lower dosage, which is amazing. I started a new arthritis medication a few months ago, and I hope this means that it is finally helping. I do not see a new Rheumatologist until February, so I also hope I will have a better plan then.

For some reason I was able to go without my knee braces after my Disney trip last month. For weeks I was able to walk to my car after work without limping. This past week, however, I have been noticing my pain getting bad again. I believe it has to do with the weather getting colder. I don’t always realize how bad my knees are until I have to walk down the stairs. It takes me longer than most people, and I take one step and slowly drag the other leg behind me. At Aly’s family’s house I have crawled when I walk up the stairs, or cling to the railing when going down. I have skipped showers because I cannot lift my arms to wash my hair. One scary symptom I experience is that my elbow gets stuck in a bent position. It can take a full day or longer before I am able to straighten it. The pain with a subtle movement makes me want to cry. I do not always know what to do when it happens, other than prednisone + advil, and trying to straighten it with a slight twist behind my back.

stuck + swollen elbow

I do not mind wearing my knee braces to work, because they help me get through the day. However, I really have been trying to go without them. I can already sense that very soon I will be using them again. I have been needing to wear my wrist braces again as well. I dread winter, when I can’t take my key out of the ignition or key into my apartment. I am actually used to this by now. I know it is a part of my life, and I anticipate it. It still does not make it any easier. It is hard sitting down and being in pain when I try to stand up.

I think my eyes can sense a flare coming before the rest of my body. Light is so intense, even when it is dim. I am usually sensitive to light due to trauma or whatever the reason, but it is a different sensitivity with my arthritis. I do not always realize how much I am squinting and tense my forehead because of it. I bought light sensitivity glasses originally made for migraine sufferers. They are not the same as sunglasses, because they are meant for indoors as well. The lenses are darker, so it is easy for people to think I am wearing sunglasses. They help immensely but I am incredibly insecure wearing them at work. My supervisor told me not to worry about it, and to just wear them. I know she doesn’t care, but I certainly do. She can see how uncomfortable I am, and how my eyes can water easily. Still, I feel so silly wearing the glasses. I know not everyone understands, so I feel more insecure because of that. People ask questions, or give looks. It is not in a bad way, but I know they are curious. My old glasses were all they had in stock at the time, and they made me feel like Ozzy Osborne. I bought new ones, which are a lot better, but I am still insecure about the lenses.

the old glasses that made me feel like Ozzy. (only wore all of this when I was alone in my office)

It is hard with chronic illness because I know what helps me, but I still worry so much about what other people think. It is not written on my head, “I have RA!” I don’t mind telling people, I just wish I did not have to. A lesson I am learning is to just do what I need to do when I need to do it, and eventually people won’t be phased by it.

As a Peer Specialist, I sometimes briefly explain to the people I support, “I have RA and my eyes are sensitive today, I have to wear these glasses in case you are wondering why.” Luckily I have only done it about twice in meetings. Some people I support also have chronic illnesses, and they understand.

As I cope with the weather I know how important it is to take care of myself and to not push myself too hard. Sometimes this means icing my knees when I am home or at Aly’s. Sometimes this means texting my supervisor that I need to work from home. Sometimes this means taking a bath or sitting in the shower so I don’t have to stand. Most importantly, it means having compassion for myself. My body cannot help it, and it is trying its best.

This post was written months ago, and a lot has changed since. I am going to share it, but at the end I am going to write an update about how things have been now.

The post from March 13th 2022:

I realize that one of the reasons I wanted to start writing again was that chronic illness has become a big part of my life. I wanted to bring that into my discussions of mental health and recovery. Today I have been watching Outlander, crying on my futon wrapped in a blanket, wearing a travel neck pillow due to pain. I have taken Advil and Aleve in the past 24 hours with no help. I have an appointment tomorrow with a rheumatologist to go over a slew of blood results. I’m so close, but today everything feels too far. Today I feel stuck, and in this negative mind loop that just wants to escape from my body and my life. I’m tired of being in pain. Feeling unwell is one thing, but not knowing why is equally awful.

The irony is that inflammation makes depression worse, and depression then makes pain + inflammation worse. It is a messy cycle of trying to stay positive yet feeling so overwhelmed. I have not been kind to myself. When something is wrong with my health and I feel limited, I blame myself. I have been kicking myself when I am down. It is a hard pattern to break but at least I am aware of it. I try to take a lesson from everything I go through. This is teaching me to have more compassion for myself. This is teaching me to stop expecting more of myself and to try and be gentle with where I am at in the present.

This pain isn’t my every day, but lately it has been daily tears and whimpering with subtle movements. This past year my body hit a point of overwhelm and it still bothers me that I do not know what triggered it all. I always want answers. My heart condition flared, I had ER visits, mystery joint pain and unable to straighten my fingers most mornings. My endometriosis brought me back to the hospital, with fevers and clotting and very little options left for solutions. At 23, I had a hysterectomy. It revealed much trauma within my uterus, Adenomyosis, and hemorrhaging. I did not regret my decision, but I did expect to feel better by now. My heart has been good and strong, my pelvic pain is nonexistent, but I’m not out of the woods yet. Now I am trying to figure out my low red blood cell counts, low iron, high rheumatoid factor and other signs of elevated inflammation in my body. I do have hope that I will find a working treatment soon, and I will advocate for myself as much as possible in my next appointment.

In the meantime, I’m tired of holding back on writing. I’m tired of waiting for myself to feel better in order to find my story worthy of sharing.

I’m not the only one battling illness and I am not the only one struggling with my mental health because of it. It is understandable why people do not talk about what they go through. We fear being judged, or seen as craving attention. I don’t see attention as the worst thing when it comes to this. Illness makes you feel alone. Hiding it creates shame and a sense of feeling like an imposter on social media or everyday life. I would not write about these things if I felt that someday I will be writing about something else. I want to write about the now to remind myself of this time of healing and finding compassion for myself. I’m not sure just yet how the present will fit into what I will do in the future. I do know that when I get a calling to write about things, good comes of it. I have to roll with that.

& today May 21 2022:

Months ago I was beyond discouraged over my health. Doctors were pushing me to take injections of a new medication that had a lot of side effects, and I cried at every visit because it did not feel right. I wanted to refuse the drug, but I was told that if I didn’t my illness would worsen and my joints would function as an elderly person. I felt hopeless, and I tried 1 week of injections in addition to prednisone. The prednisone helped me get through my day, but it definitely made me gain weight. I was not entirely upset because I have been underweight due to health, but I knew how bad this was for my body. I didn’t know what to do. It was the only thing that was helping fast enough. I found my injection gave me the worst nausea, a migraine that lasted days, and horrible brain fog. I could not answer a simple question. I was on phone calls with my girlfriend and I barely spoke but did not know why my mind was so blank. My therapy appointments were in silence and I was so overwhelmed that I could not think straight that I gave myself panic attacks. It was so stressful realizing my mind could not function the same. Still discouraged, I stopped the medication. I told myself I would find another way despite what the doctors told me was possible. I did find another way.

I started working with a holistic doctor, and connected with a holistic health group online for other opinions. I turned to different supplements, and a new medication that I won’t mention the name, but I will say is a lot safer and will not be long-term. I also learned why my body flared in the first place. It took a while to notice a difference, and to find my right dose. I guess over time I noticed my therapy appointments were about other things, and I stopped talking about my pain. I stopped taking prednisone. I was sleeping better. I had thought I would be feeling this way for a long time. I thought I was adding another diagnosis to my list. Now, I am just grateful I listened to my gut. Doctors know a lot, but everyone is different. I did not feel like these specialists were looking at my entire history or situation and they definitely were not listening to my concerns.

Feeling like you don’t have control over your body is scary and frustrating. Feeling like you do not have a say in your treatment makes you feel powerless. Do not get me wrong, sometimes you do have to surrender and trust the doctors. In this situation, I know I would be a lot worse had I gone with their recommendations. Now I can focus on taking care of myself without limiting myself to the couch!

Oh, and I have the energy to start writing again.

More to share soon. :)

My adenomyosis journey

December 16th arrived so quickly. It felt like forever at first. The pain I felt beforehand was a confirmation that I wanted/needed the surgery. It affected me in weird ways. My arm hurt, my wrists were weak, I could not bend my right knee. I barely slept because my entire body hurt.

View fullsize

Days before surgery.. I just could not get comfortable.

I was not nervous on surgery day, it was only anticipation to get it over with. My parents could not come into the surgical unit with me, due to covid. When my name was called I hugged them, my step-dad told me to have fun, and I followed a nurse to the back. The nurses knew I had anxiety, but when they asked me if I needed anything I said I was good. I really was OK not taking anything, and waiting until anesthesia. Gathering my history, a nurse said I have the health history of an older person. Yes, I am aware. Before surgery I was very dehydrated, and they drew my blood twice because some of my levels were a bit off and they wanted to make sure it was not a fluke. I was not too surprised. I had been so unwell.

The nurses and even the anesthesiologists were very kind and it was a small hospital so I did not feel overwhelmed. Waiting for the IV, I dug into the muscles in my thighs and hoped they would no longer hurt when I woke up.

Before I knew it my surgeon had arrived, they were getting me ready, and I was wheeled into the operating room. They warned me, “it’s very bright and very cold.” It was, but at that point I had some medicine to relax me. I think the last thing I remember was them telling me they were going to give me some oxygen. I think I recall a mask on my face and I think I was knocked out within seconds.

When it was over I woke up slowly, and it was hard to stay awake. I noticed my legs no longer hurt, and I rated my pain a 3. It did not take much longer before I realized I lied, it was definitely not a 3. I asked for more pain medication and it helped tremendously. I had 3 glued incisions on my abdomen, in addition to 1 inside my belly button. I also had stitches inside to replace my cervix- which I of course won’t be able to see. In the recovery room I was doing well, so I only had to stay for a few more hours. I had a catheter in and after they took it out they wanted to make sure I could pee on my own. A nurse helped me hobble to the bathroom and TMI, I just sat there for a while with zero idea how to go. My stomach was swollen. Because they removed my cervix, and I had zero connection to that part of my body or how to relax those muscles. All I could see in the toilet was blood, and a mini trail of blood I had left walking to the toilet. I stood at the sink crying, knowing I would not be able to see my parents or get discharged until I was able to pee. I also was admittedly scared that even peeing hurt. The nurse waiting outside the door knocked to check on me, and opened the door to me standing at the sink in tears. “I couldn’t go, I said.” She looked over at the blood in the toilet. “I’m so sorry” I said. That is SO me! I WOULD apologize. She assured me it was okay and helped me walk back to my bed. I continued to cry while lying there, and I could hear everything in the hallway, including the nurse whisper to someone else how I cried and apologized for not peeing. Another nurse came in to give me more fluids, and she left me a box of tissues. She commented on how sweet my doctor was and how she wanted her 17 year old to have her. I also thanked her for being kind as well. Not all nurses are!

Once my pain was managed and I was able to use the bathroom on my own- yay- I was discharged, and brought out front to my parents in a wheelchair. I thought I would sleep in the car, but I didn’t. I was too impressed with how different I felt. On the way home there was a bright sunset, and my mom said “Look Haley! See! It’s a sign!” I was just happy to have it over with.

The first 2 days were hard, and it was painful to sit up or walk without being hunched over. I was doing ok, but my mom did have a small meltdown she told me. She just felt overwhelmed for me, and badly with how many surgeries I have needed to have, and everything I went through this year. I reminded her this was a good thing. She did say how amazed she was that after my surgery she could see the color come back to my face. I had looked so pale and skinny, and my chin was covered in cystic acne. After my surgery, my skin just started clearing up, I was no longer pale, no longer limping, and life was brought back to my eyes.

The worst incident I had with recovery so far was a cough attack I had after sipping water. My throat was still scratchy from the breathing tube and usually when I cough, it is over and over again until I can stop. I clutched a pillow on my abdomen and applied pressure as I coughed into my arm, eyes watering, yelling “OW” and “FUCK!” I could see my mom wincing as she watched me in pain. Tea helped me a lot more. I learned the hard way that laughing, coughing, sneezing, were all very painful.

When day 3 came, I challenged myself to stop taking my pain medication and only stick to ibuprofen every 6 hours as needed. Day 3 was when I felt my best. I sat upright at our kitchen table and worked on a coloring book. I had purposely bought ones with positive quotes because I had no idea how I was going to be feeling mentally.

I always learn a lesson after a surgery. That lesson is that even when you feel well, you still have to baby yourself because your body is healing from a lot of trauma inside. I find that I try to do a little too much. I stand for full showers, make my own meals, hunch over to grab things. It felt OK at first because I still had medicine in my system. As the days go on I am noticing how very sore and tired my body is. Doing an activity for 15-20 minutes long means I need a 2 hour nap after.

I am not supposed to drive for 2 weeks, but with Christmas Day approaching I am a bit anxious about my plans. Christmas Eve I will have a ride to my great-grandparents, though I am worried about my energy level, and being lazy on the couch elevating my legs. Christmas Day I was invited to my girlfriend Alyson’s family’s house to do a gift swap, but it is an hour away. I am worried about the car ride, and also my energy level. I have FOMO, fear of missing out. I want to be able to do it all but I am realizing that if I want to recover sooner, I need to take the first several weeks easy. My incisions may look small, but I still had a major surgery. I’m still not quite sure what I will do.

Aside from physically, I can tell that this surgery was a new beginning for me. My body and soul are healing in numerous ways, and emotionally I have a lot of healing to catch up on. It is all positive, though it won’t be easy.

I still intend to have a happy holiday. I am excited for Alyson to come home from NYC as I missed her so much. I just need to put less pressure on myself to keep up, and know that in time I will be able to do so many things I was never able to do before. Thanks to this surgery!

December 30th is my post-operative appointment and I am eager to hear my biopsy results. So far all I know is that during my hysterectomy my surgeon also found and removed a bit more endometriosis that had grown back since my last excision in 2019. I feel so refreshed and different now that my uterus is out so I am beyond curious what they will find in the biopsy! I have zero regrets, and I am really proud of myself for advocating for myself again. I know myself, and my body, much better than I think I do.

Thank you all for the patience and the well wishes!! We will see where recovery goes from here.

I had 3 cats at my mom + step-dad John’s house to spoil me

The countdown begins!

Not a Christmas countdown, but my hysterectomy countdown.

Really quick I want to clarify a commonly asked question and one I did not know at first! I am having a total hysterectomy which means removing the uterus and cervix. This does not include the ovaries. A partial hysterectomy is removing just the uterus, leaving the cervix. A radical hysterectomy is when the uterus, cervix, ovaries, and fallopian tubes are removed. This will mean hormone therapy, and will trigger menopause symptoms (which I won’t be going through). However, even with my ovaries I will still ovulate and therefore still have PMS/PMDD.. yay.

Back to it..

I have gone back and forth with my emotions around this surgery. I will not regret it, but it does not make it easier. I get so excited about my surgery date, but I have had moments of “weakness” where I would cry over the thought of never being pregnant. It does feel like a loss, because it is. However, what I will gain will be worth so much more. I will be healthier, happier, and my body will not limit me as it has.

Earlier this month, I had the worst flare-up of my life. Yes it began with a period, but it was so much more than that. A massive ache in my pelvis and groin that traveled to my ankles, clots, nausea. I assumed it would only last 2 days or so. I had a virtual therapy appointment and I could not talk much because I was so nauseous. I spent the session in my bed. The next day I saw my mom who told me I looked really pale. Still, I went to NYC for the weekend to visit my girlfriend Aly. Though she told me I did not have to come if I was not well, I wanted to because we can’t always see each other at a distance. I regretted going, but not because of her. My pain did not get better, it only seemed to get worse. I hardly slept each night. I had a headache, neck pain, back pain, stomach pain, leg pain- I think just about every part of me hurt. I also was hot when Aly was cold. I felt feverish. I had a bag of ice behind my head, a heating pad on my stomach, I could barely eat, and I was so sick. I think I cried every day. Correction, I know I cried every day. Aly has certainly seen me at my worst, but I am so grateful for her staying by my side. I had taken so much tylenol knowing it never helps, but not knowing what else to do. High strength CBD lotion hardly helped as well. I was crying awake at 2am come that Monday morning, and by 4am I was sitting on her bathroom floor still in tears, a warm forehead, and in the worst pain I have ever felt.

4am.. in New York City.. we were walking to the hospital. I have been to the ER before during really bad flares, and usually there is nothing they can do. When pain is invisible it is even harder to be taken seriously. I just felt safer being checked out since I felt so nauseous and feverish. In my support group, whenever somebody debates going to the ER, someone always reminds us that it does not hurt to go in case there is a rare chance something IS really wrong or a cyst burst, etc. It was a horrible experience. The nurses confessed to being short-staffed, but nobody had checked on me for several hours. At one point I was moved into the hallway and I was not sure if I was crying from the pain, my anxiety, or both. I was hysterical in fetal position, and panicking that I could hardly breathe with my mask on. I was relieved they gave me fluids, and pain medicine through the IV. I think the only reason they took me seriously was because I told them I was having an upcoming hysterectomy for endometriosis and adenomyosis. In the past, they would not give me anything stronger than tylenol. I have had scans come back normal and once was asked by an ER nurse in Boston, “Are you sure you don’t just have to poop?” It feels dehumanizing and nobody understands the pain unless they experience it for themselves. I think I would have preferred a broken bone.

We were there for 7 hours or so, and I felt horrible I kept Aly there with me. I called my OBGYN’s office but they could not give me medical advice out of state. I was told to just trust the doctors and advocate for myself. By the time we left, I had asked to be discharged. They asked, “are you sure?” They offered more pain medication but at that point we had been there all day and tired of waiting for a doctor. I was so sleep deprived I just wanted to go home. I sobbed because I just wanted my own bed and to be close to my doctors, but I was afraid to get on a train with how I was feeling. My parents were traveling, so I called my grandmother who was ready to meet me at the train station in Connecticut . She planned to come with my grandfather so he could drive my car back for me from the garage. I felt horrible, but instead of napping after the day at the ER we hurried ourselves to Grand Central station. On the train I held it together for the 2 hour ride. I closed my eyes and listened to Taylor Swift. I think it helped my anxiety, because I know all of the words to her songs. It was comforting, and took my mind away from my worries because I could focus on the lyrics. I reclined in my grandma’s car, with my grandpa following in my car. I wrapped myself in a blanket. I was so thankful to be back in my own bed that night, but that week I felt like I was still recovering from the flare. I believe I told my therapist that I felt I was recovering from a car accident.

The bright side, if there was one, was that I no longer had any negative feelings about the hysterectomy. I only had fear that I would go through that amount of pain again. My doctor said that weirdly that happens where her patients get their worst flare-up right before their surgery. I remember standing in the shower with my hand over where my uterus was pulsing at me, and I was talking to it. More like pleading. “I know. I know you’re mad. Please, please hang in there. We are almost there. I know you hurt, I know. But please hang in there.” I just cried and let the hot water overwhelm me.

Here are some items I have prepared for post-surgery so far:

• an abdominal binder

• compression socks

• a coloring book (with positive quotes because I’m prepared for a mood drop)

• a lap desk

• a Verilux “happy light” (for seasonal depression)

• the medicines I’ll need

• HBO Max- I got a subscription which will keep me occupied when fatigued

I had my pre-op appointment and I was relieved to hear that this surgery has fewer risks than my endometriosis excision. It makes sense, because with the excision they are going around or tackling other major organs. My silly mother asked my surgeon if I will be OK alone that first night home, and assured her she lived only 10-15 minutes from me. I had to remind her that a) I have a roommate, and b) I recovered without her after my heart ablation so I should be okay after a hysterectomy haha. I can feel my mother’s anxiety. I told her that I think I’m handling this better than she is and she told me that she would prefer it that way. Still, it’s hard because I do not want anyone to feel sorry for me. I still see kiddos in my future!

The week of my surgery (Dec 16) I also have a tele-health consult with a fertility doctor to discuss egg freezing. All of this is very soon to discuss in my relationship with my girlfriend, but it’s prompted a lot of good, genuine conversations between us. She has been a great support and listening ear. I’m so very grateful.

My biggest fear is that after my endometriosis surgery in 2019, I went into a deep depression around 4 or 5 weeks post-op. My thyroid levels dropped (I have hashimoto’s disease), and I was also hospitalized for my mental health come 6 weeks post-op. At least this time I can prepare myself for any mood shifts. Even though my hormones won’t be affected much, they still can be. I have clinical depression, so I am at greater risk. What I can remind myself is that this time I am in therapy twice a week. My psychiatrist is always there when I need her, and if I need medication adjustments she will be right on it. I also live with my best friend, and I know her company will be much appreciated. If the tears/emotions do overwhelm me, I am going to remind myself it is normal, I am safe, my body is healing, and it will pass.

23 more days..

I can do this!

Hello!! I had no idea how long it would take me before I was back posting here..

Here is what you may have missed:

• I had a 3rd heart surgery in May

• I disclosed and have been processing trauma memories from childhood in therapy..and it is truly a full-time job + overtime. Hardest thing ever, but helpful.

• I was a contributing author in a book!! Link is on my home page :)

• I participated in a Suicide Prevention Month panel on Zoom with the Canadian Mental Health Association and members of Worth Living.

What the heck is bringing me to the keyboard today?

Something big is happening in my life and because it is something very unique for someone my age..I feel like I should write about this journey and what I will be going through.

This is the year of surgeries I guess.

I won’t get into the heart journey much in this post, but if you follow me on my Instagram I was pretty open in my captions about the journey. Before my heart surgery I was passively suicidal. I was not going to do anything, but I also gave up to where I started saying I did not want to go through the surgery anymore. I surrendered to my body and the fight. Since my surgery, which I’m glad I did surrender to- I have been doing well. It has taken some time. I struggled this summer. I don’t remember the last time I saw such a low number on a scale but for months I was having baby food, unable to digest anything without nausea and diarrhea (I don’t even care about TMI anymore lol). My collar bones popped out, my ribs showed, and losing weight was not admirable..I was self-conscious. The good news is that the more I started to work on in therapy, plus working with a naturopath, I’ve gained weight back. I want to be able to say the hurdles of the year are over, and that I can truly start to step in to my life at 23. I can’t yet, but I will soon.

My heart ablation helped so much but I want to truly feel out of the woods. This is my time to tackle all of my health stuff. I have had to be a hell of an advocate for myself.

Come December.. I’ll be tackling my Endometriosis again in a laparoscopic excision, but will also be tackling my Adenomyosis (will explain below).

At 23 years old I have made a huge decision for my body. I will be having a hysterectomy!!

*Brief moment of silence*

Many people do not understand exactly what Endometriosis is- but there is another name most people definitely do not know. Adenomyosis (what they call, endo’s cousin) 

A brief explanation:

Endometriosis is when the tissue that lines the uterus grows outside the uterus. It can stick to other organs as well. (Mine was growing around my appendix, bladder, and was pulling on my colon.) This can be treated through surgery, however it isn’t a cure- I’ll always have endo. Multiple surgeries are often necessary and endometriosis can grow back. If you don’t work with an endometriosis specialist, there is a greater chance your endometriosis can be missed in surgery as it presents in different forms. It is a disease that needs so much more research, education, and awareness.

Adenomyosis shares similarities, however it is when the excess tissue grows INSIDE the uterus. A lot of my symptoms are suspected to be due to Adenomyosis, but it was crucial at the time I have excision surgery for diagnosing and removing my endo first. However the only way to diagnose and cure adenomyosis (yes you CAN cure it) is through a hysterectomy. It is very clear my issues right now are stemming from inside my uterus, not outside.

Continuing this post I will share more about coming to this decision, and how it impacts my desire to have children someday.

I do not want to share every symptom specifically because I do not want others to self-diagnose or get worried about their own reproductive health. Just listen to your body. I will say, that my symptoms now are not identical to my endometriosis pain, but they are still holding me back. I also politely ask that though I would appreciate hearing from someone who has been through it..I really am not appreciating unsolicited advice especially regarding this decision. Endo and Adeno are very misunderstood (even from many OBGYNs) and my decision to undergo a hysterectomy is something I’ll be open about but it is still very personal. Though people mean well.. everyone’s health situation is unique.

Here is what sucks about when a specialist suspects you have Adenomyosis (or endometriosis honestly):

There is little they can do without surgery. There is no way to get rid of the Adeno, or even visually see it..without a hysterectomy. Because doctors do not push this surgery on people with a uterus, it is a very personal decision. When they can’t push surgery, they push birth control and other hormone therapies. I’ve been on the pill which affected my weight and my mental health horribly. I got an IUD before my endometriosis surgery (as a last resort before surgery to see if it would help my pain). My pain did not get better, it only gave me more mental health issues and some hella painful cystic acne so I got it out early.

I was passing massive blood clots and sleeping 14-17 hours. I sent my doctor a beautiful photo of one of the clots and she replied asking me to come in. I found myself in the same position I was in a few years ago, sitting in my doctor’s office talking about options. She passively mentioned a hysterectomy being a last resort and I said, “I’ve seriously been thinking about that.” She wanted me to think about it some more, as it’s a huge decision to pursue a hysterectomy especially at my age, and that it is OK if I changed my mind. She asked me to talk about it with my psychiatrist. I did, and my mind was made up. My specialist understands, she is on board, she is just looking out for me and does not want me to regret anything later. I appreciate that she genuinely understands the emotional, personal part. She also specializes in Adenomyosis and knows I am left with hardly any options left. I can’t really wrap my head around it. This year..having a heart ablation and a hysterectomy.

This is a decision I never thought I’d be making at 23. I was told if I go through another surgery my specialist would be taking care of all of it- as treating only the endometriosis may not make a big difference at this point.

“But what about children??”

Kids aren’t a part of my plans at this time but I have had to think seriously about their role in my future. I’ve always wanted children and the experience of pregnancy and childbirth. Childbirth interests me so much..I find it fascinating. I thought it through. Natural, home birth, doula and midwife. I also know that given my health history a home birth would not be a smart bet. Birth would be really hard for me and be more trauma on my body that has already been through so much. My heart condition, my endometriosis, sexual trauma, my PTSD, being a likely candidate for postpartum depression. It’s a huge decision, and I’m talking about it a lot in therapy. I know I want my life back. I want this to be MY YEAR I tackle the health issues that have held me back. I don’t want to experience many more years of pain and the impact it has on the rest of my body. When asked about how I feel about not ever being pregnant, I say “My want for carrying a child is so much less than my want to truly get my life back and be pain-free.” Someday..I know there will be other options. I look at things differently being gay too. I never felt, and I never feel like I will have to be biologically related to my children. I am however, looking into freezing my eggs!

“Will you need hormone replacements?”

Nope! They will be removing my uterus and cervix, but keeping my ovaries. I’ll still ovulate. I’ll still have eggs. They don’t typically take the ovaries if they don’t need to..plus hormones are still essential (estrogen helps cholesterol and bone health). Still, hormones may fluctuate after surgery. This is something I have been worried about with my depression, because I was hospitalized for my mental health 1 month after my endometriosis surgery. I am going to prepare myself before surgery by talking about everything in therapy. Surgeries in general, trigger my trauma, so I have gotten better about making sure I have the right supports in place before taking on something big medically.

Though this is a CHOICE I’m making, and am confident about- there is still a lot of emotion around this. Around the fact that I have to make a choice like this to begin with. Is it weird that I almost picture my uterus to be crying and bandaged up inside me? I almost want to hug it..tell it it’s going to be OK, or that I am sorry for letting it go.

I have tears just writing that…

I think my posts in time will become Hysto Diaries as I go through this journey. I’m grateful I can connect with people in my support groups who are around my age, going through or have gone through a hysterectomy for Adenomyosis. I can’t explain how helpful it is reading posts of so many people saying how it has helped their quality of life and that they have NO regrets. It really helps when I get lost in my head.

23 will still be my year..recovery just may be longer.

Stay well, stay kind to yourselves, and kind to your bodies.

Appreciate the days you feel well, at home in your skin. I know I am looking forward to having that feeling last longer than it has!

xx

Haley

As I pursue my social work degree, my main drive is advocacy. Looking back at my younger years, my ability to advocate for others came from compassion. Though I was a shy child, compassion taught me to use my voice. 

The truth is, advocacy was something I often struggled with. Well, only when it came to advocating for myself.  

I was just too selective with my words. let a lot of things slide. I would straighten my back and move along without saying much. If I was confused, I would not raise a hand. If I was lost, I would pretend I knew where I was. And if I was hurt, I would wait to see if it met my own definition of “bad enough” before I told. 

Advocacy is something that has always been a drive of mine, but it needed to start with me.  

I bring up the topic of advocacy because for many reasons I have advocated for myself these past few years. What has been a bigger challenge in self-advocacy is making sure you are being heard.

At the end of my New Years post I wrote that I would strive to advocate for my health for the year ahead. This post will share what I have learned as I have since done just that.

Written by me, a chronic pain sufferer. I write this after my recent Endometriosis diagnosis. Though, I hope all readers can apply this to their own story, reflection, + action.

It is one thing when you tell a doctor you are in pain. It is another thing if the pain is invisible. It is another thing if the blood tests, and radiology results return “normal.” You feel good for a second to hear those words, but then you feel frustrated. I have been in pain for 4+ years. It became my normal, and if it wasn’t “bad enough” I wouldn’t complain. Just a once in a while’s doctors visit where I said, “yeah it’s still there.” About 1 year ago things got worse, so I sought out the testing. In 6 months I was bounced around from 3 providers of different specialties, trying to uncover the cause. 

When the first result came back normal I crawled in bed and debated the help I was seeking. Especially the bills to my insurance. 4 months later I was missing classes and googling when it is necessary to go to the ER (yes I am stubborn). When it reached that point I sought out a new specialist and a long-waited appointment at a Boston hospital that I was positive would run more tests. Instead, I was recommended a probiotic and told to come back in 1 month. I could have fought for the testing, but I felt so defeated that I could hardly speak. I left that appointment in tears, and after that next bill came in, I knew I would not be returning to that provider.

I had many appointments that left me feeling so helpless that I would take something to fall asleep, to keep myself from feeling depressed. It didn’t matter if it was 3pm, I decided to sleep my day away. I have had a lot of these days. Days where a phone call to my mom said the words, “I can’t keep doing this.” These days are important too. With an illness, it is days like these that remind you how important it is to bind together every last bit of your strength and be your own damn advocate.

Maybe after the first few specialists scratched their heads and told me nothing was wrong, I would have given up- but I didn’t.

---

seven suggestions to share

1. do not hesitate to do your own research.

   But do discuss findings with your doctor! It is recommended you don’t read too many WebMD and MayoClinic articles, or try to self diagnose, but by doing so I was able to start conversations with my doctors I would not usually have. Yes, it did make my head spin and create more anxiety at times. I was fortunate enough to have several sit-downs with my PCP where we went through the process of elimination and addressed my concerns.

2. get a second (third, fourth, fifth) opinion.

   **I know this is not always possible.

   I could go on a healthcare rant here..because it does break my heart with how long it can take to get a diagnose for an invisible illness. Most people can not afford multiple trial and error doctors visits. But I am including this bullet point because of the number of times I wanted to give up on asking for help. When you are led to believe it is in your head, it’s shameful. It sucks, it hurts, and it’s costly. But if you can..please don’t stop there. The reason I saw too many specialists was because my symptoms were not adding up. I had neurological pain, gastrointestinal issues, chronic fatigue, brain fog, joint pain, pelvic pain, and bladder retention. I saw one doctor, who would refer me to the next.

3. do what you can to remind yourself it isn’t in your head, when others imply it might be.

“Everything looks normal.” I heard those words over and over again. Which should be comforting, except I was still in pain and out of options of what to do differently.

I take pictures of the one symptom I have that is is not invisible. My stomach will blow up like a balloon. Painful bloating leaving me looking pregnant. I would drive with my pants unbuttoned. It’s cute. Many endo warriors take belly pics, and some advise against it because it can be triggering for body image issues. I took the pictures as many do, but I took them because on the low pain days, I wanted to remind myself it was very real.

Without taking a picture, you can validate what you feel in many ways.

4. find what helps in meantime

For me it was an epsom salt bath a day, elevating my legs before, after, and in between shifts at work. Buying and wearing compression socks. Sleeping with a heating pad (total fire hazard but you know-), and cutting out inflammatory foods from my diet. I did not have a cause to my pain, but I knew what made it better and I knew what made it worse!

5. keep track of your symptoms, dates

Mark flares on a calendar, get an app to track symptoms, start a pain journal. Document past doctor’s visits, tests that were done, etc. Document it all.

6. keep light (try)

It’s hard feeling unwell 99% of the time. It is frightening to feel so different from the you that you knew yourself to be.

Take care of that precious mind and heart of yours. Watch shows, listen to music that makes you feel good. Surround yourself with people who make you feel good! Soak in moments of laughter.

Tap into your light. Don’t lose sight of it, even on the darker days.

Self-advocacy takes strength, willpower, and hope. Reminding yourself of your worth, and taking even the smallest efforts to bring light into your day will put you on your path to receiving the care you deserve.

7. don’t be afraid to be bossy, “needy”

Let me first emphasize this: Be patient, and respectful to medical professionals.

They are human too.

But as my bullet point reads, sometimes you have to do a little more to be heard. You need to let someone know when you feel you are not being taken seriously, or are not getting the care you deserve. I tend to worry about burdening or bothering others. Knowing what I needed and asking for it is something I am still working on.

My turnout ..

I found a doctor who looked me in the eyes and apologized it had taken me so many years and so many doctors to find someone who heard and believed every piece of my story.

I didn’t give up on myself..

and I don’t intend to.

---

xx