I'm struggling. I would be lying if I said otherwise. I am feeling overwhelmed and crushed by life. I had FINALLY let go of all my fear and doubt, fully embracing this second chance at life I had so apprehensively tiptoed - only to crash back to reality. Crash hard. Like a rocket from space, you know, the ones you see totally disintegrate into flames as they re-enter the atmosphere in movies. Seriously, that ships hull was my mental health. It's a flaming disaster right now. I emailed my poor PCP in tears telling her that I was a constant anxiety ridden mess.
Will this cause a relapse? Will this take away everything I have worked for? I feel like I am drowning in open water where no one can hear my cries for help - even though I am surrounded by a beautiful support system and highly competent medical team.
Definitely not my brightest moment. I am not sure why the idea of fighting again is so daunting. Why I cannot seem to emotionally process this situation, when I did just fine with an onslaught of dire situations in the past. When I received my diagnosis in 2011 it didn't seem to phase me at all. I was sort of emotionally numb and ready to just fight. Each blow seemed to rolled right off me like water on Teflon. Now, all I feel are sensitive emotional nerve endings and I just want to hide. I can't sleep, I have breakdowns in my car, and I feel like I want to jump out of my skin at all times. Everyone expects this constant bubbly, ready to conquer, Chanel, but I am only human. I too have bad days, and right now, I am having a bad month. Needless to say, I am getting the help I need from my amazing team both mentally and physically.
Wednesday I had my first round of Rituxan to combat the
auto-GVHD. Besides some swelling and fluid retention due to my crappy heart not pumping out liquid as it should - It went smoothly. I turned on my favorite ASMR youtube channel and just tried to relax. Honestly, I was so drugged with Benadryl I slept almost the entire four and a half hour infusion. A small bought of nausea, a headache, and some facial flushing were my only reactions, so I was a-okay. I head back for my second infusion on the 31st.
Yes, I will for sure be in costume.
Right now I am simply doing my best to keep my head above water and not get too worried about results before they arrive.
Wednesday I had my first round of Rituxan to combat the auto-GVHD. Besides some swelling and fluid retention due to my crappy heart not pumping out liquid as it should - It went smoothly. I turned on my favorite ASMR youtube channel and just tried to relax. Honestly, I was so drugged with Benadryl I slept almost the entire four and a half hour infusion. A small bought of nausea, a headache, and some facial flushing were my only reactions, so I was a-okay. I head back for my second infusion on the 31st. Yes, I will for sure be in costume. 
I’m so sorry to hear this. I’ve followed you for awhile now... live in Olympia. You don’t have to be strong or funny or resilient or anything for your followers. You don’t have to be an example or a hero or an inspiration. Let others hold you up and take care of you. Thank you for your candid sharing of your amazing and often intense life.
ReplyDeleteIm so sorry to hear Gods please take her hand and help her through.
ReplyDeletePsalm 34:18
The Lord is near to the brokenhearted
and saves the crushed in spirit.
You are in my thoughts and prayers for strength going forward! You are an inspiration. So sorry you're having to go through this. <3
ReplyDeleteFather...in the name of Jesus, I am praying again for you to intervene in Chanel's life. I thank you for what You have done with her life thus far in light of the struggles she faces with her body. However; Lord, You designed her beautifully and wonderfully...I blame this fallen world for disease, and Lord we has humanity messed up in the Garden.
ReplyDeleteBut You Loved us enough to send your son Jesus to this earth to die for our sins and the diseases that will befall us too. So I am asking again for a miracle only You can do. Yes modern medicine is top notch, and her team is the best at what they do...but we need you God to touch Chanel's body and make it new. You are receiving the Glory already, because before this disease entered her life, this disease was killing people, and there was no mention of it to the world on the scale it is now.
I am so glad that Chanel didn't remain silent. She could have, but she chose to fight, but Father she needs your strength now more than ever before! She needs Your peace, Your wisdom to make it. In Jesus name; I pray these things done for Your Glory, Amen!
Saying an AMEN to this♥️
Delete❤❤❤❤❤
DeleteHi Chanel, I am so sorry to hear you’re battling more of this awful disease. I’ve been following you on Facebook since I was diagnosed with limited SSc 2 years ago. You have given me so much inspiration and hope. Recently I’ve been having more symptoms of disease progression myself, and am waiting to have a stress echo to check for pulmonary hypertension. Although I’m in a different position than you are re: the auto-GVHD, I understand well enough the anxiety of not knowing what’s happening inside your own body. I’m so glad you have a wonderful support team. Please use them as much as you need to! I’ll be thinking of you and sending you positive thoughts of strength and calm. Much love to you, Chanel:)
ReplyDeleteMonica
My close friend's daughter has recently started Rituxan for a very early onset autoimmune disorder. It's hard, it's okay to be scared and anxious. She's just a little kid and most of the time she is happy and bubbly but she hates the treatments, especially the steroids. I think when we get sick when it gets down to it we are just a scared kid still. You just do you. Enjoy the moments where you feel good and people will just have to accept that you have a very legitimate reason to feel like crap a good chunk of the time!
ReplyDeleteI hear you. Don’t put on a brave face for us. We know and understand.
ReplyDeleteI also came crashing down last year when I had to quit work due to a crushed, bulging disc. No more kiddos to brighten my day. Shortly after, I had the worst celiac flare of my life and I nearly needed a new immune system due to the flare turned mast cell attack. I was homebound for a few months and I had another crash, I realized my support system is nearly non existent. It consists of my husband.
I hope you find comfort in faith and the live of your support system. Hugs!
((((Hugs))))
ReplyDeleteDearest Chanel, thank you for the update. I can only imagine how difficult this must be. Please try to feel ok about not feeling ok. You have been here for us. That works both ways. We are here for you❤️ Vent, cry, rage...all feelings accepted. Fear, anxiety and depression. Sending vibes of mental support, strength and love 💕
ReplyDelete