Working Through The Last 6 Months

I’m in my feels today. It’s one of those days where I’m overtired, stressed, and in pain, which means that things are just a little harder to deal with. The air feels heavier, the sky looks darker, the vibes are not immaculate, and the weight of the world feels greater. I’m pretty sure if I stubbed my toe, I would lose my ever-loving shit.

I have the tendency to compartmentalize and bottle things up when I get overwhelmed. It’s a saving grace when I’m going through something really difficult, as I’m able to put my emotions aside and be a voice of reason. However, it usually comes back to bite me in the ass at a later date because those emotions accumulate and eventually become unmanageable. Today has been the later date. All the stress that I’ve faced over the last few months has officially caught up with me and now I need to work through it. Had I worked through it when the stress was occurring, I may not be the blubbering mess that I am this week, but we’re here now! So, let me give you a bit of an update on the things I’m working through. 

In late December, my parents decided to separate. It’s obviously not my place to talk about the details or the reasons why it happened, but I can speak about its impact on me. I’ve felt fortunate that I’m old enough to understand what’s going on and that there’s no need to place blame on one person. Neither of them is a bad person, they simply just aren’t flourishing together. To be honest, when they told me that they had come to this decision, I felt relief. I believed and still believe that this is an opportunity for them to grow and be their best selves. However, while I think this was the right decision, it wasn’t the easy one. 

It has been incredibly difficult to see two of the people I love the most in the world go through such hurt. It doesn’t seem to matter if divorce is amicable or not, it’s an uncomfortable and painful process rooted in loss. For me, one of the hardest losses was that of my home-base. My family and our resources don’t share the same space anymore and not only is that confusing, but it makes for a lot of extra work at times. There’s also the loss of family-time and tradition; I’m sure that we’ll still do a lot of the same activities, but they’ll undeniably look different going forward. The grieving process for these losses and all of the others has been unpredictable and intense; I seem to handle things well until I don’t. The hardest moment for me so far was when I was asked to separate the Christmas decorations. I felt so silly because they were just Christmas decorations, but in my head, it was like deciding which parent got which memories. There have been lots of those moments and little breakdowns and I think that’s something I can expect to happen for awhile yet.

In February, my pain started to become more intense and unmanageable. It had been 6 months since my last Dilantin infusion at that point, the weather was crappy, and I was obviously dealing with a lot of stress. While all of that was going on, I had to undergo surgery to remove an oral fibroma. It was this relatively small, benign growth on my lip that had likely developed from my constant clenching/lip biting when I’m in pain. Even though that surgery took less than 20 minutes to complete, it required me to hold my mouth open and have someone touch my face. This minor procedure ultimately contributed to the growing flare. I slowly started to lose my ability to exercise, cook dinners, and keep up with the house. I was eating less and spending most of my time in bed. In early March, it all came to a head and I had to go to the ER. 

Warning: Nasty Hospital Stuff

I’m no stranger to the hospital, but this trip was brutal and traumatizing. This was the longest I had gone without an infusion in years and the flare was one of the most painful I’d ever had. When the nurse went to access my port, the needle popped out and sprayed blood across the bed. She said she had pulled out a clot. My chest was swelling up and bruising pretty badly at this point – there was obviously blood accumulating under my skin. They tried to access the port two more times, but I was so swollen, they couldn’t feel the outlines and get the right spot. I was in so much distress, they just did IM Toradol and started an IV. Dilantin through an IV is incredibly uncomfortable and burns quite badly, but they didn’t want to waste anymore time. My blood pressure was getting dangerously high and I was screaming in pain.

I could see my mom crying in the corner and I felt so devastated and guilty at that moment. Even after all the years of therapy – working to separate myself from this disease and acknowledging that this is out of my control – I still have moments where I feel like a burden. I feel like it’s my fault for subjecting my loved ones to this, even though it’s the diseases fault. All I wanted to do in that moment was apologize to my mom and the nurses for having to deal with “my” disease. It was rough and I think those thoughts are something I’ll have to work through for the rest of my life. What matters, though, is that I got the help that I needed. The Dilantin worked its magic and I haven’t had to go back to the hospital since that day.  

After the blood clot fiasco and the month of bruising that followed, I decided that it was time to get my port removed. This was one of the hardest health decisions I’ve ever made. On one hand, I had this thing that I was using less, that required so much maintenance, and that was constantly causing me discomfort. On the other hand, it was incredibly invaluable when I needed it and saved me from the burning pain during infusions. I also had to consider the future; I knew and I know that I will likely need another one in a few years. It’s obviously extra surgery to have it removed, so I had to weigh whether that was worth it or not. Ultimately, I felt that it was worth it and so far, I’m happy with that decision. Surgery is always rough, but removal was much easier then insertion. I know that my next infusion will probably bring up feelings of fear and regret, but I’m trying really hard to focus on this progress and just enjoy my time with a non-robotic boob!

In April, I attended a webinar on Pediatric TN. This was a really fascinating experience and it answered a lot of questions that I’ve had since I was first diagnosed. However, it also led me to have more questions and it brought up a lot of “what-ifs”.

What if I would’ve been diagnosed sooner? What if earlier intervention could’ve given me more relief? What if I had had a surgeon that specialized in pediatric TN? What if they missed other compressions during surgery? What if I develop more health issues because of this?

Now, I try really hard to avoid that kind of thinking because it’s unproductive and I have no control over it, but it’s incredibly hard to steer your brain in another direction. After attending that webinar, it is so clear how badly the medical system fails TN patients (especially young ones). I can’t help but feel like I fell through the cracks sometimes. I see my neurologist next week and I really don’t know what to expect. She’s absolutely amazing, but I don’t know if she’ll have answers to the questions I have, if she’ll be willing to lower my medication, or if she’ll have any new options to try. Living with that kind of unpredictability and feeling like you’ll never get enough information is really difficult.

I’m at this point in my health journey that’s pretty confusing. I’m still doing better then I was before surgery; my flares don’t happen as often and I can go months without an infusion. However, I still have a pretty severe case of TN; I’m still unable to go to school/work, I haven’t been able to lower my medications (I’m actually on more now), and waiting on infusions means my flares are more painful than ever. When I’m in a good pain place, I’m extremely productive and I feel very proud of the work I’m putting in. When I’m in a bad pain place, I feel like time is escaping me and the progress I’m making post-surgery is slowing down. The world just seems loud, contradictory, and overwhelming.

So, all of these things have been contributing to my feels lately. I know that I just need to take the time to work through all of it, even if that time isn’t comfortable or simple. I’ve waited so long to acknowledge all of these emotions – I can’t expect to work through them in a day or two. However, just spending a few hours writing this out has been immensely helpful; it’s easier to organize my scattered thoughts when I can see them in front of me. And hopefully by sharing this writing, I’ll be able to help someone else feel seen or less alone in their journey. Life sucks sometimes! We may not be able to control all the suckiness (it’s a word now), but we can control how we treat ourselves and our people. Taking the time to hone that control and better it will always be worth it. Let’s just hope we don’t stub our toes in the process!

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