Your Body Hates Itself

 With my most recent visit to the ER, oh yes there has been another...

The Barren was away and so I took myself at 4:30am. As I sat on the ER bed, with multiple band aides from missed pokes for blood and IV, holding back tears from frustration and discomfort and trying my best to keep a brave face I texted my brother to let him know where I was.

He in turn came the distance and kept me company as I waited to find out what the newest test results were and to be happy to learn my appendix was still okay, but my Crohns was still busting my intestines up like a rock star in a hotel room.

When the doctor came into the room to explain that things were the same as my last hospital stay a month earlier, and they were increasing the steroids and I needed to contact my doctor about changing medications as my infusion drugs were not working.

My brother asked why this was happening? The doctor looked at me (like, you wanna tell him?) and then turned to my brother and said "her body hates her" Then smirked and said he was off to call in the new prescription. My brother was kind of shocked and then I explained how my autoimmune disease is attacking me and is being extra aggressive at it. With a better understanding he and I were discharged and he walked me to my car with the overnight bag I had packed just in case. I arrived home shortly after The Barren, who had driven 6 hours to get home to me. The next couple of weeks were filled with calls to insurance and pharmacies and now I am on a new drug. 

My bestie texted that she needed to see me and that she bought a ticket to see me. It made me cry and feel MASSIVELY touched, special and awkward about the attention...but I was looking forward to a mellow weekend with her.

It also just happened to correspond with me stopping the newest round of steroids while maintaining the new medication, another bump so to speak. The Barren was once again booked to be away for a week and I thought it a good idea to not be alone. She arrived on the afternoon after I awoke with mild discomfort...and as the weekend progressed I was more guarded with my abdomen. 

She had all the energy in the world! We went to as many thrift stores as we could handle and I barely ate or rested the whole visit. I had arranged for a massage for us both, something I try to do when we see each other (as it only happens a couple times a year) and I quickly realized that my abdomen was quite tender, so I could barely lay face down for mine.  I think I hid it well, she talked about how amazing hers was 💓 we ate afterwards and when we got home I told her I really needed to lay down. She snickered a little and then we said goodnight and as I was crawling into bed I could hear her snoring from the other room 😏

The next morning I made homemade waffles and we chatted a bit before I needed to shuttle her back to town...on the way she asked if we could hit a couple more thrift stores...which we did and I found a couple things and after dropping her off. I was glad to give her a vacation and she was quite relaxed when I drove her back, prepared to deal with her parents and the 6 hour drive home.

 I drove in total silence on the way home. 

I collapsed into a HOT bath and bed after feeding the cats. I was so touched she came to see me, it is rare we get that much time together anymore without partners injecting themselves into our activities or plans...she had a lot on her mind and we had space to talk it out. In the end, though...

I was left exhausted, in discomfort and spun.

I spent the following day in bed with a heating pad, when I woke up I considered calling my doctor who was on call all weekend, but I reminded myself that things were gonna be bumpy...I sat and spoke to the little scared girl in me. Spoke directly to my brain and we had a long conversation.

I moved slowly, put on a new pair of thrifted super soft, loose bright orange pants (like a traffic cone) and only left the house to water my garden and get some melon from the market.

This morning with the help of a heating pad I am feeling better, not perfect but better and I know tomorrow will be another step away from bad.

The fundraising art exhibition I worked hard to get into opens Thursday, so I am focusing on feeling good for that so I can stand and be social for hours! 

This disease has taken advantage of my good nature, my kind soft edges and run me over repeatedly. 

I am actively fighting the depression that accompanies pain.

I am trying hard to flip the script with my brain and focus on how hard my body is working, how thankful I am that my body keeps showing up for me. How strong it can be and how it is able to rest and heal.

I am not allowed to travel (according to my gut doctor) I am too fragile, and that hasn't sat well in my heart...but I understand it. So when The Barren takes a BIG international trip for work later this year, I will be at home...focusing on my stillness, healing and hope that the next one I will be holding his hand the whole time.

Shake the disease

 So it has been a shit couple of weeks. 

More than normal kind of shit.

I landed myself in the ER and had to stay overnight in the hospital.

 

I had some mild tenderness in my lower right side and my gut doctor told me that if that ever happened get myself to the ER right away. So after a couple of days of trying to figure out if it was a pulled muscle, a tender ovary or what, it got more tender and I went at 5am to the ER. 

I was taken back right away, and then it all became a flutter of activity and I did everything in my mind to remain calm. The Barren was with me and I am thankful for that. It was the first time doctors assumed I was in pain, and I kept having to tell them that I wasn't, that it was tender. One doctor even said " we as men would never be able to deal with the pain women deal with daily, and I just want to make sure you are not in any pain" I think that is when I stopped processing reality. 

After a change of nurses, IV placement, starting some antibiotic drugs and taking blood- 6 members of a  surgical team came in all at the same time as a second doctor. When I heard surgical team, The Barren said my heartrate rose quickly and my blood pressure sat higher. I think there were 7 people in the room all asking questions and telling me things and it was like a tsunami of information was closing in on me. The surgical team determined that I didn't need surgery, but wanted to keep me overnight to make sure I would respond to treatment. The doctor said the same...I felt like Alice falling down the rabbit hole.

My autoimmune disease was in a flare and it is right next to my appendix, so they wanted to make sure they knew what was flaring. thankfully my little appendix is holding steady 💓

I got assigned a room, and moved out of the ER. As they were taking me there, they mentioned that it was the maternity floor so there is lots of extra security. The irony was another brick to a surreal day. I got my own room, with open bright windows. My nurse came in to ask me a bunch of questions, and then let me sit in quiet to process.

The Barren went home to get me a change of clothes and my HRT drugs and glasses.

I sat in my room alone for a while, quietly crying, sitting in the strangeness of the morning that had unfolded. A whirlwind of people, drugs, questions....

 What had just happened? What was happening? over the course of the next few hours I was visited by another four doctors and surgeons asking the same questions, pushing on my tummy and asking how much pain I was in. I only insulted one surgeon by asking questions he couldn't answer and then as he left he said, I'll see you in 5 years, and I said..." for what?!"

Then my gut doctor arrived and The Barren was there, and we got everything explained and I was empowered with information and soothed knowing I had come in at the right time, done the right thing and that my immune system was too smart for my infusion drugs it seems. Blood work would determine it...I still had options and ways to treat and ideally avoid additional issues. 

A new level of learning had taken place, I was confident in knowing what was happening, and could explain it to others. That made me feel better and seen and thankful.

I was moved again to the top floor of the hospital for my overnight room, and had a view of the coast and a couch and was still solo. The Barren was so flustered and freaked out, he kept a brave face though... The hospital didn't know how to feed me, so The Barren brought me a couple things from home in a cold chest. We had eaten most of the food from home as this was the weekend before we had to leave for the fumigation...The Barren focused his attention on packing what I had not gotten to yet. 

My overnight was strange, and I tried to reframe it in my mind as a messed up hotel stay, or think of it as a hostel stay from decades ago. Never knowing when a person would join you in the room or what those sounds were. I didn't sleep much, I was anxious and the bed mattress is covered in plastic, so I spent a good part of the night sweating and tossing, trying to not bend my IV arm and fighting restless leg. I knew the nurse was coming in at 11:30 to give my steroids and so I set a alarm to wake before that and avoid being startled awake, and then again before her 5am vitals check. The early morning wake up worked well for me, as I treated it like I was getting up for yoga, I drank water, I got out of bed and washed my body with a washcloth and changed my clothes. I had time to sit in front of the big window and watch the sunrise slowly....in fact because I was out of my bed at 5:30 when the group of women from surgery arrived they were confused who I was. I got up from the couch and said "it is me, I'm the patient " and I walked over to the bed and sat down for them to ask their questions and then confirm that they were going to release me from their watch/surgery standby list. I thanked them and told them as lovely as they are, I don't want to see them again. They appreciated my humor and were glad to recommend the release. They were followed by a line of doctors who were astonished by my nature and were happy to declare/recommend that I was too healthy to be in the hospital for another day longer. My gut doctor arrived around 10am to have a detailed conversation with me and it was actually quite validating to have a doctor explain why and what he was concerned about, how we can move forward with other medications if needed, but that the blood work will take about two or so weeks to get back as they were sent to a remote lab that does the special testing required to get answers. I told him that if I wasn't an artist, I was going to be a doctor. That I was obsessed with microscopes as a kid and still have mine, but I realized it was actually a tool to view light and that it makes sense now that I am a photographer. He shared how he has always been into illustration and we talked about his graphic novel that he drew in medical school to remember drugs, interactions and reactions. It felt like an honest real conversation and I thanked him for empowering me with true knowledge, not speaking in a derogatory or dismissive way to me about my disease and having patience for my questions and always looking for answers for me. It was something I really admired and trusted him for. He was touched...and felt that although most people stay in the hospital longer when transitioning to steroids he felt that I had a true sense of what I needed to be aware of, look out for and was comfortable releasing me a day early to my own best care.

I was in the car with The Barren at 1:30 that afternoon headed to get some food to bring home.

I ate and took a nap and the following day I resumed tasks for moving things for the fumigation. A friend came over to help move my patio plants down our stairs and across the way and ended up moving a few before hubby couldn't find a cat* and then the whole thing stopped and never really started again until I had finished moving the patio plants myself, and digging up my front yard myself to move those plants to a friends home via a truck. Over the next couple days and into the week following, I did more than I should have, but I measured myself, took moments of rest and focused on eating well and drinking more water than normal. It has been non stop and yesterday was the first day I made space for myself to simply focus on a monumental art project that is due in one month. I ended up being exhausted yesterday and although I spent it not doing anything real for the project, I let myself rest....

Today I gathered some supplies and started to plot out ideas. I am going to do my best...and focus on simply making things that make me happy. Re-centering the goal. 

I am learning something new everyday about how strong I am, how tenacious I can be, how soft I can also be and sometimes I just need someone to tell me I didn't do this to myself. The little girl in me is feeling like she needs some reassurance that she isn't bad or being punished for something she did that she doesn't remember. I had a lot of quiet time in that overnight, and this past week, where I reflected on all the past medical trauma I have survived and how it makes me when I am around doctors and in medical environments. Infertility made me an advocate for myself, and my love of science made me question and look at things deeply....now I have to combine them and learn how to live with these autoimmune diseases in a way that make sense to me.

*the cat was found, she was watching us run around looking for her and made no attempt to assure us. Typical cat move.