Am I Living or Surviving?

I haven’t written in a while. I’ve been sort of on auto pilot. The Rituxan infusions unfortunately did not work. I wasn’t able to finish the series due to reactions at the infusion center. Failing another therapy is a swift reminder that I’m just one more step closer to failure. My body is failing me and I’m starting to wonder if I’ll bounce back. At what point have I exhausted all options? My current rheumatologist recently told me in her office that she wants to send me to another rheumatologist because she is concerned at how rapidly I’m declining and nothing seems to work. All my lab work keeps coming back worse than the time before. I’ve had 3 biopsies, I’ve failed four rounds of methotrexate injections over 2 years, I failed Rituxan infusions and developed Plaquenil Toxicity. I’m continuing to have retina thinning each time I see my retina specialist, despite stopping the Plaquenil 15 months ago, which is not very common. Typically any damage to the eye, although it’s not reversible, it doesn’t usually continue to get worse, however in my case it does. Literally I’m starting to believe the universe is trying to break me from the outside in. Yes, from the outside in.

I can feel my heart slowly breaking into pieces as my mind tries not to tilt too much on its axis. I tell myself it will get better. I tell myself it won’t always be this bad. I tell myself to put makeup on and wear a smile. I tell myself I’m great and I can get through the day. I’m so afraid that tomorrow I won’t tell myself anything. That’s the day I’m scared to face. That will be the day when I’m not able to accept this awful diagnosis that just keeps on making me lose my hair, lose my sight and cause rashes from the slightest change in temperature. I cannot walk my dog without reacting to the sun or warmth of the air. My hands turn bright red and instantly become painful. I cannot control any of this and it’s so embarrassing. It’s affecting everything. I’m getting blisters across my face. They’re so bad that my Dr now has me on a 5th medication to see if it will help. The inflammation is so horrific that I’m embarrassed to say I’m actually in tears over the discomfort. I don’t mean that I’m sore and some ibu will help. I’m talking about awful bone pain, my hands hurt so bad that after bringing groceries inside today, I just stood at the kitchen sink trying to keep the tears in because I had to concentrate to try and regain my mental status over the discomfort of being in a flare 24/7 at its highest since 2018. I’ve lost 80% grip in my right hand and 60% in my left. The tissue damage in my hands is progressing way too fast. I play it off pretty well most days. Today I dropped my purse on the floor at the Dr office, I dropped my water twice and I couldn’t hold my credit card at the pharmacy to swipe it. I really struggled. So my good days are becoming non existent. I can’t see at night safely. I can’t remember the last time I didn’t have a day when I didn’t wonder if I’ll stop getting slapped in the face with my illness.

I was in the hospital over Easter weekend with pericarditis. Dr said it’s from the viral illness I’ve had since the end of March. I was really sick for over 2 weeks and ended up seeing 4 Drs between urgent care, pcp, specialist, then finally the ER bc it got so bad. Honest to God I’d like to have a day when I’m not reminded that I’m limited in what I can do.

I had an appointment today for another biopsy on my face and they were unable to proceed because their sutures are the ones I’m allergic to. In what world is there not another safe option? I feel like defeat is trying its hardest to gain momentum.

I started Benlysta injections last week. Yesterday was my second injection and like clockwork, the waves of nausea hit hard. Then the headache and rounds of slight dizziness accompanied with more nausea came almost every hour and lasted for several minutes at a time. I’m over being over it! Let’s hope this is the long lost therapy that will be my BFF, if it doesn’t kill me first from its high risk side effects. All jokes aside, dead serious. Some pun intended.

Will I get to sit on a beach again and watch the sunrise and sunset? I pray the answer is yes. I pray so hard. I keep praying. Maybe I’m doing it wrong because I feel so weak and like maybe my purpose is not to be healthy. I can’t imagine a world with so much to offer, but no ability to experience it. Is that selfish? I’m scared sometimes because I see myself traveling again and I’m afraid I may not get to one day.

In a world where I can be anything, I want to be healthy. 🤍

XO,

S

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