Difficult weekend

This has been a very challenging weekend. My birthday was on Friday, which was great, but I got knocked down with an awful migraine in the evening. Even though I got an abundance of spoons for my birthday, I was still wiped out. I have been running a fever for over a week. We have no idea why. My body is just a mystery that keeps us all on our toes. I had a bunch of labs drawn. My hematocrit has dropped to 36, which is not bad, but when it gets below 40, I get wiped out so easily. I am so so short of breath. My kidney function right now is not stellar. My BUN and creatnine have doubled in 2 months. I still have to cath myself on a regular basis. I am getting used to being out in public with my cane, but it is still hard.

My girls had a dance competition yesterday, and I really didn't want to go because I felt horrible, but I didn't want to let me girls down, so I went. I was there with my do rag, no make up, in my comfies, and walking with a cane. I am sure I was an absolute embarrassment to my girls. I am so grateful that my Mom was able to come down and help me get them ready and help at the competition. I wasn't much help. I felt pretty worthless.

Also learned that we lost a fellow migraineur. She was my age. She left behind two boys, they were 15 and 13. We don't know how she died and out of respect for the family, we are giving them space. Regardless, I carry a heavy heart and feel so sad that another migraineur lost the battle. Yes, you can die from migraines. Migraines put you at increased risk of stroke, especially if you suffer from them daily or have excruciating pain. That is why I push so hard to raise awareness. There is so little knowledge about migraines, and until they are taken seriously, we will continue to lose more and more. Sadly, across the country, there are several doctors that refuse to take a migraineur as a patient because they are so complex.

People give me crap about all my research, but we have to be our own advocate. I am very passionate about changing the way people view migraines.

I have shed many, many tears this past week. It is so hard living this life. I hate losing my independence. I hate that I can't make plans in advance. I hate that people think I use migraines as as excuse to get out of doing things. As great as it is to be home for my girls, it sucks that I can't even take care of them and have to depend on so many other people to help me.

I know this won't last forever. I keep on keeping on.

In loving memory of Amy.