Feeling Hopeful

Starting the beginning of the week, I definitely can tell that the Posaconazole, Dupixent, Sajazir, and the Ketamine have really calmed down my immune system, which allowed the antifungal to work.

Roughly 2 months ago, prior to all the medication changes, I weighed roughly 188 lbs (I think our scale at home is busted). Everything hurt. Swelling and inflammation was everywhere. The fungal infection was definitely in my scalp, in my left ear, in my sinuses, face, throat, hands, and everywhere else.

Before starting the posaconazole, my hands hurt like hell. Spasming and locking up constantly. My skin color was just pale white, and reddish. The top of my head was super bumpy, and was super itchy. Every joint in my body just hurt to move. Weird dark streaks were on the bridge of my nose, and all over my legs.

Swelling-wise, where wasn’t it? Looking at the before & after pictures, I was definitely swollen, especially in my face, throat, mouth, stomach, legs, and ankles. I’m not kidding when I say it felt like I was going to explode.

The sheer amount of inflammation my body had was unreal. I could definitely feel it everywhere, but the worst place was my head, left ear, mouth, and hands. Hell even my wedding ring wouldn’t fit anymore, my hands were that swollen.

After the medication changes, things look much better, and more importantly, feel much better. From the standpoint of my immune system, it feels like it’s “shut off”. Before, my body always felt spun up, active. Now? It feels calm, and quiet.

Another thing that really changed was the shift in my skin color. I wasn’t pale white, or red.

One of the more important things that’s changed as well, is my WBC’s have dropped significantly. For as long as I can remember, my WBC has always hovered around 18-24. Never really moving, however, every 3 weeks I get IVIg, and along with that, I get CBC/CNP labs drawn. The last result showed a significant drop, down to 11.2. That’s the lowest I’ve seen my WBC’s in a very long time. My next IVIg infusion is Friday, so hopefully by Sunday I’ll have the results of that. I definitely feel way different, and I’m hoping to finally see my WBC drop below 9. That would be awesome.

One of the most noticeable things that’s changed over the past 8 weeks, it’s all the inflammation, swelling, and pain has gone way down in my head, face, mouth, and throat. Whereas before, every morning I would immediately get hit with the stinging / burning pain in my mouth and under my tongue. The usual ritual of drag myself to the bathroom to take a Dilaudid to get things under control from a pain perspective. Now? Every morning I wake up, it doesn’t feel like I’ve been chewing on bees the whole night. My throat also doesn’t feel closed off, as well as my neck has shrunk significantly. The facial swelling is definitely improved, as it doesn’t feel lumpy anymore.

Having all this new-found relief is definitely something that if you told me last year, this is how I would feel, I’d look at you and say “no way”. As long as I can remember, the “normal” for me was not fun. The amount of pain, and inflammation was pretty intolerable at times. Most days, it would constantly remind me that there’s something else going on. I always felt “off”. My immune system would constantly remind me in some way that it’s fighting something. One of the most welcome changes, is the fact that my Dilaudid usage has gone down by at least 75%. Whereas before I was having to religiously take it constantly, where now, I only take it if I really need it.

Since the ER visit, the re-addition of the Posaconazole, switching to Dupixent vs Xolair, and the intervention of the Sajazir has really turned everything around. From 2 months ago, today, things are absolutely better. There have been noticeable improvements everywhere, and I’m so grateful for that. I know that the Ketamine therapy has also played a crucial role in all of this as well, not only from an anti-inflammatory perspective, but a mental wellness perspective as well.

I’ll be honest, the Ketamine played probably one of the most important roles in the past 3 years. It’s given me a temporary break from the chronic illness. I’m really glad that my immunologist is open to discuss things, because time and time again, I would always mention that once I start treatment, it always felt like everything was “off” for a brief period of time. If anyone who has dealt with chronic illness, and/or chronic pain, you know what it’s like.

Switching my therapy to Mindbloom back earlier this year, has also enabled me to work on myself, not only from a pain/inflammation perspective, but also from a mental wellness point of view. Program wise, Mindbloom offers a very wide selection of focused therapy. In January, the program I chose to start off with was burnout. Let’s be real, balancing chronic illness, along with a full time job, is absolutely one of the hardest things anyone has to do. More days than not, the chronic illness was always job #1. Most of the time, things just felt impossible.

As my Ketamine treatment went on, I started to turn inward to myself. Yes I’ve definitely acquired a lot of PTSD from everything that I’ve had to endure since realistically 2017. Between all the surgeries, hospitalizations, procedures, and just the overall shit sandwich of everything, wore me down to nothing. As I continued the guided program stuff with Mindbloom, I started to realize, that I have seriously lost my way, with several aspects of my life.

When I finished the burnout guidance, I shifted my focus to relationships. I know that I’ve been through a lot, but at the same time, recognizing the amount of shit that Aggie has had to deal with has been insurmountable. She has always been with me every step of the way, but I was always so focused and trapped into survival mode, I could only focus on myself and the immediate. I know that she’s seen me survive through a lot, but I never had the time to talk to her about things, like us, how she was doing. Unfortunately for me, the exponential crushing weight of chronic illness kept me trapped at home. Always tired, in too much pain. I am truly grateful for Aggie, she’s such an important part of my life, and continues to be that as I write this. I cannot thank her enough for her perseverance, patience, and help with helping me through this.

As my sessions continued, something that I didn’t think would happen, happened. In 2012, I lost my mom to cancer. It’s something that hurt pretty bad, and I never really “addressed it”. Death of your closest parent is something that’s the #1 hardest thing to process, and for the longest time, I didn’t do it. It was always there, it happened. Right after the ER visit, I broke down. I wrote a pretty awesome letter to my mom. I finally got the time I needed to process that whole thing. My mom fought cancer for 2 years, but unfortunately, cancer won. Fuck cancer.

As things started to set into my mind, the more I’ve come to realize the amount of emotional damage that the past 10 years (and longer) has done. I’ve always thought of myself as someone who can deal with things, but doing the Mindbloom program, I’ve come to realize that I’m terrible at dealing with it. For the past 2 years or so, getting the brief moments of “air” that the Ketamine would give me from the chronic pain, one thing I realized is that I lost my way. Being stuck in the cycle of survival, or fight/flight mode has been something that the therapy has allowed me to realize. Having to deal with all the inflammation in my head, probably got me to say some pretty stupid things to myself over the past year. Your internal “self-talk” is probably one of the worst things when dealing with chronic pain.

I am grateful that I am able to do the Ketamine therapy, it’s really helped me push through a lot of the emotional stuff that comes along with dealing with chronic illness, it’s been instrumental. During the sessions, I forced myself to keep a journal of things, where I just write things down. One thing that I really failed at during all this is my own self maintenance. Being stuck in a dark / shitty place is not a great place to be, because most of the time, I felt really shut out from things, opportunities, experiences, and just being in the moment. That’s usually always been shrouded by the amount of shit I’ve had to endure with everything.

As things progress, I’ve learned a lot about myself, and the state of things. One of the big things the whole Angioedema thing did, was scare the living shit out of me. Just like the heart attack, I had a huge panic attack. One of the big things I’ve ignored, is being on a sense of heightened aleft, is it doesn’t allow you to ever calm down my mind has always felt “on” for too long. Always hypersensitive to things. Anxiety is something that I didn’t think I had, however I couldn’t be more wrong. The worry and panic it causes is something like getting stuck in a loop or cycle that’s extremely hard to get out of.

Since I’ve been out on disability, I’ve really tried to focus on the damage that the chronic illness has caused in my life, especially with myself, and Aggie. We have started communicating more, getting back where things were before I got so incredibly sick. I know that I haven’t been there most of the time, but in the same token, I was there. Just trapped in a glass house. My frame of mind wasn’t the greatest, and this definitely showed how much the chronic illness has broken me.

For awhile, I was not in a great place. Between the amount of crap I had to deal with being sick, but the natural stress that comes with work, and everything else. At some point, it felt like I was losing my mind. But as the guided program stuff with Mindbloom progresses, it’s helping me heal the mental aspect of things. It’s allowed me to recognize the fact that I was not in a great place. It’s allowed me to open up, and be more honest with myself, and admit to the damage being sick causes not only from a physical perspective, but a mental one as well

If you are going through chronic illness, please make sure that you take time for yourself. I know that may sound like something simple to do, I can tell you from experience, it’s not. Breaking the thought cycle of the things that race through your head is something that’s not easy to deal with. Anxiety and stress can definitely not help things, so take it from me, try to work through things. I definitely acknowledge the fact I just didn’t deal with things the best. All I can do is continue to do the best I can going forward with myself, and everyone in my life.

So as I continue to work on myself, I am definitely trying to take this time to really reflect on things. I’m working on myself every day. I’m truly grateful that the change in my health has afforded me the ability to try and heal and fix the damage and fallout that chronic illness causes. I’m focused on tomorrow, as I’ve been stuck in the “right now” or the past.

I am hopeful that I can continue to heal in the best possible way.

Today I’ll go to my GP to fill out the return to work paperwork, as I am looking forward to going back to work in the coming weeks. I’m so grateful and appreciative of everyone’s patience, and just helping me through this. I do apologize to anyone if I got a little goofy, or just wasn’t in the right frame of mind. All I can do is just be better.

Another thing that happened yesterday, is I was contacted by the folks @ Andembry to get me setup on the preventative medication for the angioedema. In July, I will be meeting over telehealth with Mayo Immunology regarding that subject.

Thanks for reading!