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 … Continue reading Am I Living or Surviving?
Often times I choose to say I’m fine. I find it helps with facing the actual truth of dealing with this whirlwind of drifting, surviving, and rising through the trauma of an illness there is no cure for. My immune system is gone. It doesn’t exist anymore. Not even in the slightest way. Monoclonal therapy … Continue reading An Open Letter To My Rituxan Infusion
No one ever told me I wasn’t going to love every minute of motherhood. Motherhood will serve you some of the toughest, most overwhelming, completely frustrating moments you can imagine. But you’ll handle them. Because that’s just what mothers do. Those are the ones we live for. Breathe them in, soak them up, and be … Continue reading Something Positive
It’s been a spiraling journey downhill since January 2018. My body tells me what my limits are but my brain disagrees. I’m not ready to take life slow or have limitations. My brain doesn’t seem to be in sync with my symptoms. I hate not being able to work out for a full hour without … Continue reading I Was Healthy My Whole Life Until I Wasn’t
Can we talk about how exhausting this is? •Lupus •Leukopenia •Hypovolemia •Sjrogens •Plaquenil toxicity •Reynaud’s •Osteopenia •Malabsorption syndrome •Anemia/iron deficiency caused by iron intolerance •Sialoadenitis I am not my diagnosis and my diagnosis does not define me. After everything I have been through and all the courage I seem to find within myself, I’ve been … Continue reading Bouncing Back From Something That Is Meant To Destroy You
I’m over it. Sort of. Not completely. But I feel that way right now. In this moment. Over it. Yesss! I live with an autoimmune disease. Several actually. And apparently the combination of medications that are supposed to help with my symptoms can also cause cancer, among other long term issues. But if I don’t … Continue reading I’m So Tired of Not Knowing What To Do
It’s easy to crawl into a ball and cry and feel sorry for myself and resent and rage at what life has dealt me. My medications may not seem to work, and all I feel is hopelessness and defeat. My story is not the same as the next persons. I may feel like a balloon … Continue reading Ping Pong
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 … Continue reading Through the Looking Glass