A Turning Point

 D's father passed away yesterday morning. Thursday, June 29th he suffered a hemorrhagic stroke that essentially took out the entire right side of his brain, bled into his ventricles, and also down into his brain stem. The man we knew died on Thursday, but it took until yesterday morning for his poor body to finally run out of gas. I have spent more time with D's family in the last 7 days than I have in the previous 4 or 5 years. 

I spent a majority of the time acting as a calm intermediary between the family and the medical staff. I wanted to make sure that no one felt pressured or alone, but that they also understood what was happening and why - from a medical standpoint. It was nice to feel needed, helpful, and able to provide answers and comfort where it was needed. Now that he has died, I feel myself stepping back emotionally again, as they are soon to discover that D and I have not only divorced, but been divorced for quite some time. 

Now that Chief is gone, there are a lot of moving parts as to what happens "next." His sister will begin cancer treatment in August/September, and there have been some conversations started about what his mother will do. She's already thinking about selling the house in a year and scoping out independent living options. The suggestion of D and the kids moving in was mentioned as well (they assumed me too, but they will better understand why that isn't happening shortly). I'm not sure if anything has been run by his mother, but all 3 siblings agree - which I was shocked D would be on board so quickly. He also knows his time is running out in the rental house - the owner wants to sell, and there's no way either Doug or I want to buy... so he needs a safe place to land. With his family would be perfect for him. There's plenty of room for the 3 of them. So we will see what ends up happening. It would be wonderful if D could help support his mother, and she could help support him too. 

But my experience in the hospital really opened my eyes to what I feel more called to do with my life. It really made me realize how many families don't have a "me" to help explain to them what is happening in a warm and kind way. I've known for years that I want to get into the death and dying industry, but I just wasn't sure how to go about it. I don't want to go back to school to become and RN, mortuary school is even longer, and some hospitals require a masters degree in order to become a chaplain! So I'm still on the hunt for where I fit in, but I had an hour long chat with one of my patients yesterday - who happens to be retired from the funeral industry. We talked a lot about patient advocacy, thanatology (death, dying, and bereavement studies), and different avenues within these spaces. He suggested I reach out to Gift of Life, and ask them about involvement with their organization. He also recommended Wayne State Mortuary School for "out of the box" classes and certifications that I otherwise wouldn't have access to. He also suggested I check out anything written by Thomas Lynch. So I have some research to do and now I have a direction to start looking! 

Its a topsy-turvy time in my brain. Excitement and dread all at once. 

Round 2

 Another knee surgery is scheduled for this Thursday. I'm trying to come to terms with how I feel, but tonight I'm mostly just angry. I'm angry that my leg doesn't work and my efforts weren't "enough." I know that it isn't anyone's fault, but it's hard not to feel frustrated and exhausted from constant chronic pain. My knee hurts. And after Thursday it's going to hurt a whole lot more. 

It will get better, but I'm mentally not there tonight. Tonight I'm having a pity party for 1 and am wallowing in my upset, sadness, and frustration in the situation. 

It will get better.

More Tiny Things

 I wouldn't say I've been bitten by the creative bug, but I've made a couple more tiny plant holders. They are whales, and they are for air plants. I got the inspiration on pinterest and made one from clay, and one from apoxie sculpt. The air plant will look like the water spout out the top of their little heads. 

Once I made them I was crushed with some imposter syndrome and told my sister I felt more like a xerox machine than an "artist." She gently reminded me that I still created my whales with my own two hands. It's still my style, my creativity imprinted on the thing that *I* made. Inspiration comes in all different shapes and ways, and it's okay to be proud of my little creatures, even if the idea isn't 100% unique or original - my interpretation of the idea is. 

I had an emotional PT session this past week too. At the end of the session she asked how I was feeling with our progress, and I admitted I was nervous about my progress appointment next week with the surgeon. She asked why I was nervous and I burst into tears. Ugly cry, hiccups, the whole 9 yards. I told her I was afraid of him saying my efforts aren't enough. That, like before, I won't be believed that I am working hard, doing my exercises, and really giving it my all. That my best still isn't good enough. She told me that I need to take ownership of that appointment. To not give him any room to criticize my efforts. That I should tell him that I'm getting stronger everyday, my kneecap is really starting to move, and I'm already to 40 degrees of flexion. She told me that if I present myself as recognizing my accomplishments, rather than diminishing them, that he will be excited about my progress too. She then had me practice saying outloud all my progress. 

I told her she earned the "therapist" portion of her title that day, and she said it was simply part of her job. I like her a lot, and she's very patient with my neurotic guarding and lack of self esteem during my treatments. 

Tiny Pots

 I've now created 2 tiny pots! Both primed with gesso and just waiting for inspiration to strike! I still don't feel ready for an EDS themed "art expression," but I have decided these little pots are just for me. 

I've also decided that for every 10 degrees of successful knee bending, I'm going to treat myself with a tiny plant. So tiny plants I've earned will go in my tiny pots I've made! 

Mental Block

 I've finally started physical therapy. I'm officially 1 week in (2 sessions) and I am absolutely encountering some of the most overwhelming intrusive thoughts of my life. I continue to try to be chipper and grateful and kind to everyone around me on the outside, but I feel myself starting to buckle inside. My knee hurts so bad during this whole process, and I'm so afraid of additional pain. I didn't realize how much my previous reconstruction impacted my mental health before, but it's all come roaring back. The fear of never fully recovering. The fear of losing my ability to be intimate. The fear of losing my ability to walk without assistance permanently. 

Yesterday was a temporary sigh of relief when my therapist told me she was pleased with my progress. Up to that point, I was afraid of being a disappointment. I guess that really is the root of my mental state currently. Afraid of being a disappointment. It's how I've governed my whole life, and my constant need to please everyone else. Getting my knee back to functional is definitely for me, but it's getting harder not to collapse in on myself with frustration and exhaustion. 

I'm judging my parenting, I'm judging my work ethic, I'm judging my ability to be a worthy partner... and I feel like I'm not successful in any of them. I'm trying to tread and keep my head above water with a knee that doesn't bend and I'm getting so physically tired. 

I've done very minimal reaching out to friends and I just don't have the mental energy to chase people around and beg them to be my friend. Someone dear to me recently said that they would only be using their phone when they need to, that they were done talking. I took that as they needed space, since a majority of our relationship has been them talking or needing something, me listening and helping. It hurt my feelings that they literally had no interest in being my friend during a difficult period of my life, because they needed to only focus on themselves (focusing on themselves is not new, thats how they have always been). Another friend did that to me before, years ago, and my response was to cut them off. That break was actually really good for me, so I haven't reached out. It's been almost 2 months, but I haven't initiated any contact. If they wanted to tell me how they were doing, they could text. If they wanted to know how I was doing, they could just ask. But they haven't, and I'm done being the one to always "check in." My circle of friends is pretty tiny right now, and I'm getting okay with it. Can't be a disappointment to my friends if I don't have any! Kidding. But I'm working on setting some new boundaries for myself and for the people I choose to let back in. I'm working on getting very comfortable with the phrase "no." 

In other news, my sister had an incredibly successful first online art show. I'm so proud of her, and she sent me a piece that was my favorite, but not included in the show. She's been encouraging me to start creating art again myself, but I just feel so uninspired. A friend from high-school recently encouraged me to create something too, about what Ehlers Danlos means to me. I don't know how to describe it with words, let alone a physical representation. I had some ideas, but I don't know how to execute! So I made a pot. A tiny plant pot. It's been sitting around collecting dust. I bought paint and brushes and sculpting tools... and my inspiration took a crap. My creative motivation is just wallowing around in the dumps with the rest of my mood. I don't know where to start... 

Maybe I'll stop some Gesso on it and just "see."

Poop.

 I'll keep this pretty brief, as I'm still recovering from the last 24 hours. I woke up yesterday determined to poop. It had been a week, and I've been taking stool softeners, so it was time. I had weened myself off my pain killers to help move things along too. 

It was a disaster. I've never felt so defeated and depressed after not being able to poop. I sobbed and went back to bed. It's very hard to concentrate at the task at hand when your leg is also on fire. 

I would just like to announce that after 24 hours of blood, sweat, and tears, laboring day and night, an enema, 6 stool softeners, 3 glycerin suppositories, and a couple gloves, I have successfully delivered "the precious cargo." I am now 15 pounds lighter, and can only assume, look fantastic. Please hold a moment of silence for my poor bum, as they were a casualty of war and the poor thing may never be the same...

Post Op

 Well, I had another knee reconstruction on the 12th. I was exceptionally nervous going into it, and I wanted to believe pain management would be a snap. It wasn't. I woke up from surgery with a leg on fire. Getting pain under control was an issue, and it wasn't until I was back at my parents tucked into bed with Norco down the hatch that I could start to settle down. Getting up to use the bathroom still fires off a mini anxiety attack, and falling asleep makes me nervous. I've started twitching when I drift off, and it's usually followed by pain. 

I've already started to wean myself off the Norco. Not off entirely, but cutting it way down so I don't run out. This is a marathon, not a sprint, so I need to pace myself and ration my pain meds. 

6 weeks immobilized. Then 4 months of PT. Meijer has told me to submit all out of pocket expenses for review. My surgery was $42,000 so any help is definitely appreciated! I do have insurance, so that helps. But yeah. This year is off to a pretty weird start. I'm trying to remain engaged at work, but I also just don't feel up to it. 

Ugh.