a true story.

Guess what happened? Miracle Monday. ha ha. This week is both Rituxan and Steroids week. So, Monday comes and I go to the infusion center and as i am beginning the steroids I am informed that there is a possible issue with Rituxan.

oh no! not again! It has been awhile since we have had any issues. For a time every infusion came with some sort of admin issue which meant would I or would I not be able to receive Rituxan.

I am a part of the Genentech Foundation assistance program which means that they send my Rituxan to the hospital. I am thankful because without this program I would not be able to receive it at all.

Tracking shows it was delivered Friday but at a time that pharmacy would have already gone home. When they looked up who signed for the package it had my last name. Obviously they new I hadn’t signed for a package sent to the hospital so whoever did so with my name as there is not an employee with my last name. The medicine was left near loading dock from Friday afternoon to Monday around 11-noon Monday.

Through the process the medicine is found not in a spot it should be in at all. I did not fully understand but it seems it was near the loading dock? or a room near dock? All I know is we were very lucky that it was cold and even snowed this weekend. why? because it has to be refrigerated. It is packed in ice. but it was there all weekend. If it was not cold outside it would have spoiled. The nurses and the liaison called it miracle Monday. I received my infusion.

Here’s the thing. If it was spoiled? no infusion. If it had not been found. no infusion. Genentech, as I understand, requires it be found and shown spoiled to send out more. and there is no guarantee when that would be processed. I don’t know the procedure if it had not been found?

I found myself in this push pull of emotion. Simultaneously attached to my infusions because it helps my NMO remain more stable. I am averse to not receiving my infusion because I am at much greater risk of an attack of NMO.

It brings suffering. I am reminded in the Christian Bible moments when it reminds us of looking to the flowers in the fields, the birds, they are clothed and fed. That no amount of worry adds time to our lives. It creates suffering.

So, what do I do? I don’t want to be attached or averse? I want to be neutral. Neutral is neither joy nor sorrow and I like it. There is deep okayness in a moment when it happens.

I use art. I use words to empty my body, mind, and soul. It is like it all pours out through my body and is safely dispersed and held elsewhere and transformed. A grace of space and distance and separation.

Now I am searching out which delivery company delivered my medicine to the hospital because I want to make sure the driver gets more training if needed. I don’t know why the driver did what they did, but it is not acceptable, and needs to be addressed. It really couldn’t have impacted my life very negatively, because a severe attack could take my life. I have had a few close calls with this illness. It is not okay to leave refrigerated medication on a loading dock. It could have been stolen, there are a number of scenarios that are not okay. There is a procedure and it should be followed. And if the driver didn’t know procedure I hope they are better trained. That too would be unacceptable for a driver not to be properly trained.

It is never a dull moment in life with a severe chronic illness and one must be a constant fulltime advocate for oneself and not let up. It is a fulltime job.

Art soothes and heals my soul.

paint much love, always,
Connie Karleta Sales
a.k.a. This Crooked Little Flower