I Almost Forgot

I almost forgot how rough life was before infusion. Okay so I didn't really forget. I remember being exhausted. I remember countless doctors visits, and driving a lot. I remember feeling like nothing and yet everything was happening. But what I did forget about was the fear.

Maybe I didn't realize it at the time. I was afraid all the time. Afraid of germs, afraid I could give the wrong dose, afraid I would miss a doctors appointment, I was even afraid I wasn't counting all the calories she was eating. You name it I probably was afraid of it. I've started to notice those feelings coming back. I'll tell you it's not helpful at all! I don't know how I lived like this for years I'm sure. Poor Trey what a mess he had to deal with.

After we started infusion these fears started to go away. Squeaker wasn't sick every single day. Which made me feel it was okay to go a day or two without waging war on every germ in my house. We weren't having to see a doctor every 2-3 weeks, which was very freeing. And then a few months in Squeaker started putting on weight, and I stopped counting calories.

Since it has been about 2 months without infusion slowly but surely the fears have been coming back. At work I constantly am cleaning my hands and my desk to make sure I don't bring any germs home. I worry about when I can get in to see the doctors, and I am paying very close attention to what and when she eats.

Thankfully this time around I'm recognizing the signs and how irrational it is. I can't make it all go away but this time, this time I will keep it in control. I will use everything I have to keep the fear at bay. I will rest, I will take time to relax, I will prayer for strength, I will voice my concerns to the family, and I will not let it run my life.

Survival

I See Blessings Everywhere
It is the only way I can survive. Life is hard. In the best of times life is hard. But you have to find ways to enjoy it. I like to look for blessings.

It's been about 6 weeks since Squeaker has had her infusion. She is having a hard time sleeping, and is achy all the time. Even with pain relievers and sleeping medication Squeaker has a hard time falling asleep, staying asleep, and wake early in the morning. The blessing in all this? It didn't start until my shift at work moved from 7am to 9am. 2 hours may not seem like a lot but when you are up until 2am those extra hours are very helpful.

Trey was slowly running out of his medications because our insurance hasn't kicked in yet. Sadly just a few days without his medication and the vertigo and headaches were coming back and fast. We just decided to talk to the pharmacy and see what cash prices we could get. Our blessing? That day a new discount card came out and we were able to get both medications, 90 days supply for about $60. Not as cheap as a copay but do able. Very do able.

Sunday night I was on the brink of tears. Just worried, tired, and stressed about how I was going to keep being a working mom. All I wanted to do was stay home and take care of my little one. I feared I wouldn't be able to do the job. Then to come home and take care of everything I needed too. I was worried sick. What blessing did I find you may ask? I realized as much as this may suck I had a job. A job that was close to home, with decent entry level pay, and allowed me to be home during the evenings so that Trey can go to school.

Without the silver linings life is dull, irritating and a pain. I have found that if I can find a few happy things, or blessing everyday then I can make it through. Because life is hard. I can't state that enough. But it is also amazing and worth getting up for everyday.