January 56th 2020

I don't know about you all, but I feel like we're on the 56th day of January. lol I kid, but seriously. It has been a hell of a month that has dragged, and dragged, and dragged, and dragged... You get the picture.

After my J tube exchange my body just sort of revolted. My G tube stoma has been struggling with an infected abscess since the 7th. We've trialed multiple antibiotics. None have seemed to assist the infection for longer than a few days post the course. The last antibiotic we trialed, Amoxicillin, sent me into full-blown anaphylaxis. I have never had a reaction to this antibiotic in the past. Once my lips and tongue started to swell I had to administer an EpiPen and call the paramedics. They arrived quickly, which was a godsend, as the Epi wasn't calming the reaction as much as it should have. IV Benadryl was administered in the ambulance, as well as steroids and more IV Benadryl once at the hospital. I have never had an anaphylactic reaction outside of a hospital setting, so this was quite frightening. I was home alone and the reaction came out of nowhere. After 5 hours of monitoring, I was sent home to rest and recoup. I had a bit of a rebound reaction the next morning, but nothing serious enough to warrant medical attention. There is no doubt that EpiPens save lives, but wow, they really make you feel like absolute garbage for days on end. I'll take absolute trash over suffocating on my own tongue any day though.

I saw my Sclerodma specialist for a long-overdue visit.  We decided to move my antibody therapy up to every five months instead of every six. This means my next Rituxan infusion will be at the end of February instead of March. My skin is continuing to soften which is wonderful and my joints have definitely been less inflamed. He had me set up an appointment to get Punctal plugs since my eyes are really struggling. These are small silicone plugs that stop your tear production from draining too quickly, giving the eye more moisture. It is a common severe dry eye treatment. Well, my body hated them, unfortunately. I felt like they helped increase my eye moisture tremendously, but my eyes become very swollen and red. It looked like I had pink eye - so they had to be removed.

I'll be changing out my G tube this week to see if that helps with the chronic infection. My doctors have suggested we may need do some more invasive debridement of the abscess, which would involve moving the stoma, aka do a new surgery for that tube. I honestly can't even fathom that possibility right now. My GI issues make me feel like I am constantly treading water. It is exhausting. I am sorry I don't have a more positive update. It's just been a rough couple weeks with one thing going wrong after another.

Noel and I are supposed to leave for our first vacation together in years Monday; I am just so worried my health will prevent it. Honestly, it was probably pretty ballsy of us to even attempt a vacation in the first place, but dammit, I just want to sit on a beach so bad! All I want is three days of blissful normalcy like any other vacationing couple. I know that's not our reality, but I can dream, right? Needless to say, if you've made it this far, you maybe can tell I am feeling a bit angsty. lol I've been talking to my therapist and PCP for a while about these overwhelming feelings and we decided to up my antidepressants. I really don't talk much about mental health treatment on this blog. I feel like that should change. Honestly, it is a huge part of life with a condition like this.

So, hi, my name is Chanel and I take mental health medication. I cannot handle my reality, this reality, without a bit of pharmaceutical help. Depression, anxiety, PTSD, they don't care if you have the most wonderful support system in the world, they will still grab you by the ankles and drag you into their bottomless pit.