IT POURS! I feel like that statement was made to describe my life over the last 2 1/2 years, especially most recently. Just when things seem stable – the business is doing well, Michael is comfortable, I’m healthy and feeling good. BAM! “Sorry Katie, you’re not allowed to have things this easy for too long. Here’s some more stress for ya!”
Last night was a rough night – oh how the tears were flowing. All of the stress has finally gotten to me. From Michael’s brain hematoma and second brain surgery in July, to his increased discomfort and seizures…Not knowing what meds to change or how to fix this for him. From work being extremely stressful and busy (not the good kind of busy) to having an employee quit right in the middle of it all…To finding out about another family close to me whose daughter was diagnosed with a different neurodegenerative disease that is fatal AND realizing how incredibly unfair this world is to our children. To just now finding out that Michael’s health insurance plan changed drastically at the beginning of the year (thanks Obama!) causing his out of pocket maximum (the amount we have to pay before Kaiser pays 100%) to triple! And on top of it all, I injured my hip and knee over a month ago and they won’t get better so I’m walking around in constant pain! To make it all worse, we have no help with Michael. No nurse, no day-care, no school. Michael’s aunt and grandmothers help here and there for us to run some errands or go out on a date but other than that, one of us is at home with him while the other one is out. Mike and I have to share our day and it makes things so hard. People offer to come stay with him which is much appreciated, believe me, but there are only a few people who really know Michael; who know how to get him comfortable if he’s not, how to move him, give him meds, suction him, etc. We can’t just have anyone come over to “watch him” and really, I wish I could just stay home with him all the time but that is not possible when you run your own business.
I know everyone has stress in their lives and I’m not saying I’m special by any means. I just wish that the universe or God or whoever could just cut Michael a break. Cut me a break! Just because I’m handling the stress I already live with, doesn’t mean I want more! Same with Michael – just because he handles this disease with grace and strength, doesn’t mean he can handle more. With everything he goes through, doesn’t he at lease deserve comfort?
Michael’s seizures (We are pretty sure now that’s what they are) are becoming more frequent. He had 4 of them yesterday. They are lasting about 1-2 minutes each. I have videoed a couple of them so we can consult with neurology. He is also having bouts of nausea and discomfort so I want to make sure his shunt is functioning properly. The only problem is that with the change in his insurance, there is a $500 co-pay for the partial-MRI they want to do! Of course we will pay it to get the answers we need. This just illustrates my point that “why can’t anything just be easy?”
Please pray or keep your fingers crossed or send your positive energy to us (or do all three!). Things have been rough and we could just some help. And if you have asked me lately how I’m doing or how Michael’s doing, I’ve probably said, “I’m good” or “he’s doing pretty well.” I guess all in all, we are doing okay. Things could always be worse. But despite how I really feel or how things really are, I’ll probably always say “Yeah, things are good” because I don’t want to get into what’s really going on. I won’t ask for help and I won’t be a “Debbie Downer.” That’s what Caring Bridge and my blog are for – to spill the awful truth. And actually, after venting all of this crap out, I do feel better. So thank you for listening and thank you for letting me be honest. I’m a strong woman, sure, but my strength is tested every day. And sometimes I just need to let it out, to be a “glass half empty” kind of person for a minute. Tomorrow is a new day – maybe it’ll be a “glass half full” kind of day.
Universe, please throw us some good news sometime soon. We need it. Thank you.