I’m So Tired of Not Knowing What To Do

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 take the medications then my organs can shut down and I am at high risk for myeloma. I can’t take Plaquenil anymore because I recently developed Plaquenil Toxicity. Yay me!

I’m still waiting to see if round 4 of chemotherapy injections are going to work. On the bright side, this is the longest I’ve been able to stay on the injections without my levels plummeting. Today is week 14 on methotrexate. It’s also the 4th week on the much higher dose. Each week I tell myself it’s going to be the last week.

My illness does not define me, but it has redefined my life. I have no idea how my body will respond to this illness. Am I living in fear? No. But I am trying to be realistic with my choices.

Nothing about this disease is simple. Not its diagnosis, not its treatment, not its impact on one’s quality of life of its prognosis. Can I just tell you how completely over this I am?

I recently had a conversation about my illness with one of my very dear friends. I have struggled for years to open up and tell my story to some of those I’m the closest to. I have my family who are DNA, but let’s not forget my other family, the friends we call family; my crew. Those are the ones I’m having a hard time opening up to. I’m stubborn and independent. I don’t want anyone to look at me differently. When I explained this to my friend, her response was shattering in the most significant and loving way. She told me that they are my family and they are my support system. She also told me that her heart cannot handle me doing this illness alone for another day. She has me rethinking my priorities and realizing that I do need them. Opening that door is not going to be easy, but it’s necessary. I’m battling with opening up to my crew and she really made me stop and think about how lucky and blessed I am to call these people my family. They have no idea how much of a positive impact they have all been already and I have not opened up to them about my health yet.

I have become so good at hiding my illness and I’m scared to let people know. I don’t have all the answers and things are rapidly changing with my health. For example, I was just told that my M proteins are not where we want them. All of my Immunoglobulins are out of wack. Plan is to repeat labs in a few weeks to reevaluate myeloma markers.

Like, at what point will I be able to stop making these decisions and just take a breath?

I have parotid stones on both sides of my face too. Did I mention that? Some days I feel like the Universe is telling me to give in. Other days I feel like I’m slaying it. Then I develop the lovely Malar rash and then I’m unkindly reminded that I have an illness with no cure.

I’m. Over. It.

For now!

XO,

S

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