Through the Looking Glass

My post on March 20, 2019 talked about hope and desperately needing the iron infusions to help. It did the opposite. The moment the last drop of Venofer entered my body I began to have a burning sensation all over my skin on my chest and neck area. It’s like I was looking through the glass at myself watching everything that just happened in the prior years tell me to go F myself. It felt like I was on fire. Then immediately I felt nauseated and light headed. The kind nurse, Jaqueline, saw that I was raising my arm for help, she ran over to me and at that moment I knew I was going to lose consciousness. I told her I’m blacking out. I could feel her laying me back in the reclining chair and she yelled for help. I passed out. I remember briefly waking up and hearing all kinds of rustling noises around me and saw the blood pressure monitor that was on wheels next to me. I remember seeing 32/20. I knew that was bad. Working in healthcare I was shocked I even had the energy to open my eyes. That lasted maybe 10 seconds before I passed out again. I finally woke up and the cycle just repeated. I woke up on the 3rd or 4th syncope episode and started vomiting. Then I passed out again. What is happening and why is my body rejecting the iron, and why does my body hate me? So no more iron infusions, no more iron supplements because I have a malabsorption issue.

Where does that leave me now? So many questions. I could feel sorry for myself and feel HELPLESS or I can carry on and keep my head up. I decided to carry on. Nothing in this world is worse than the feeling of defeat. But you know what’s better? Triumph! I may be allergic to Venofer (and it was not recommended that I continue other infusions bc it’s 50/50 this would occur again), but I’m not giving up. Not even on my hardest days. I have too much to be happy for. Although my disease might claim some of my normalcy on my bad days, I still feel like I need to hide it and shelter my diagnosis from other people outside of my tiny circle. I don’t want people to feel sorry for me. I guess I feel like I have this need to always seem like I’m fine. Where does that even come from? Yes, there are challenges and my health is declining as the months pass. I have a whole new set of symptoms and added diagnosis now, even more than I did last year. Will it ever stop? Daily tasks are becoming near impossible on some days. There has not been 1 single day over the last 9 months when I did not have joint issues. I finally gave in to the MRI that was recommended and it confirmed the tendons in my hands are being affected. So… here I am… with yet another lovely health issue that I did not ask for. I know that sounds selfish and I’m ok with that.

I sacrifice my comfort to try and be the best mom I can be. I don’t want anyone to feel bad for me or offer to help me or feel like I can’t do it all. I am the mom who does it all and I don’t need anyone to reassure me that I’m doing a good job. While we all need a little pat on the back once in a while, I just want to know that I did my very best, even on my worst days while battling this silent disease.

Today is Monday. I do my chemo treatment injections on Monday’s. This morning I’ll administer my second shot of round 4 methotrexate and there’s absolutely nothing exciting about this to me. There was a time I said I would never do these injections again. Now I’m to the point I’m almost desperate for something… anything… even if it will help a little. But I still don’t look forward to the weekly treatments. You would think I’m fully prepared for the hair loss and vomiting by now since I’ve been through it 3 different times. I’m not prepared at all. I gained about 15 pounds since stopping my last round of chemo and was secretly happy about that because it meant no more throwing up and feeling nauseated all the time. Trying to prepare for round 4 is just a beating. You can’t prepare for it because you don’t know when the waves of nausea will start or finish. I try not to wash my hair daily (don’t worry—I do shower daily!) because that just means seeing more hair fall out. Trying to avoid the avoidable is like trying to get out of a maze with no end. I don’t recommend it but here I am… trying to navigate through it.

I hope someone, anyone out there who is struggling with any kind of illness knows that this is not the time to feel defeated. You’re allowed to cry and WANT to give up, but it’s not time. Not yet. You need to smile today and each day at least once. Find something that makes your days pass by and grab on to it. I find that writing my feelings is a therapeutic release and I can get things off my chest. I pray that you find your thing and it allows you to smile at least once a day!

Xo,

S

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