Turbulent, that’s my word for this post. Turbulent smashed into my life when I went in for my Bronchoscopy laser dilation surgery on May 8th. Wham! I was punched in the face. The surgery did not go well. I have not been doing well at all. Like most who live with a chronic illness I am good at faking being okay. No one wants to hear about my struggle to breathe, my inability to lose weight because so many things are standing in my way (I will get back to that), and mostly no one wants to hear me whine about life being unfair. I don’t like negative whiny people, so I don’t believe no one wants to hear about my negative or hear me whine about it. I don’t handle my battle with anymore grace and positivity than anyone else. I make small choices daily. That is how I get through my day. It is never easy.
Weight- When I weighed in on May 8th for surgery I was 376. My weight has crept up one me the last several months. This aspect made my surgery harder for me and my medical team. Yes, I have to admit that being obese does make life harder. Yesterday I saw my rheumy doctor. They have the same kind of scale as the surgical place so I jumped on expecting to either to be the same weight or gain more. That is how my luck has been. Turns out I lost 31 pounds I’m now 345. The only thing that was different is since being on the oxygen concentrator at night along with my large volume nebulizer that I wear while I am sleeping and getting rid of a negative person in my life I haven’t changed my eating or movement. I’m happy about this outcome.
Medical stuff- When my ENT scoped my throat while he was doing surgery he noticed that my inflammation is back in my trachea and is going all the way into my upper lungs. It explains why my upper chest has been hurting and why it is painful to put my trach tube into my stoma. I have been off the rituximab for a year because my rheumy made a decision that I didn’t need it anymore and my hemoglobins were low too. It has been a year since I have gotten an infusion, so I saw my rheumy doctor yesterday and told her what is going on. She read my ENT’s notes about it and I am going back to rituximab. This brings a whole new set of self-care things I will have to be stricted one. Because my hemoglobin levels are low that means my immune system is not strong, so bacteria and viruses will get me. Thankfully I had my flu shot and my pneumonia shot and shingles shot. That will help me a lot. I am scheduled for my first infusion on Tuesday the 25th. My caregivers and I are preparing some meals that I can hurry up and eat while I am fatigued.
This weekend I will mentally and emotionally prepare for my infusion by reading a great novel that I get to review called What They Meant For Evil by Rebecca Deng. Deng is one of the 80 lost girls of Sudan who suffered back in the early nineties. So far, I’m in awe of her willingness to forgive and share her pain with the world. This book comes out in September and I hope you will consider purchasing your own copy and be inspired like I am. For me, I enjoy reading memoirs of people who suffer and move forward with forgiveness, joy, and authenticity anyway. It somehow eases my pain. Somehow, I feel like I can move forward despite my physical and emotional pain. I believe that is why sharing our stories truly matter.
Until next time, keep on breathing and finding your hope.
Please wait...