I was diagnosed with “forever” stuff just a couple months before my daughter was diagnosed (at 15) with epilepsy. I had made it far enough through my learning to cope with the idea that I had something that would impact my life for the rest of my life that I was able to REALLY be there for my daughter when she needed someone who understood. After having dealt with people doubting my actually having things wrong with me my whole life and wanting attention it means that I knew how she was feeling having people doubt her. Having found out that I’m not crazy and my body really is fighting itself, it meant that, when she started to complain about pain in her back and stomach and she would pale and throw up, I fought with doctors to find out what is wrong. It means that today she still copes with health issues but it also means that she has found the people who can help her.
It meant that I could recognize, in my son, the signs of sjogrens. I had a rheumatologist who would listen. She wasn’t as aggressive in treating him as i wish she had been, but she listened and didn’t say he was too young to be dealing with it. It means that he’s now fighting his fight and I can help him.
For me… it means I have slowed down. I have started to think more about my mortality and trying to take a little better care of myself. It means that I take the opportunity to have an adventure when an adventure presents itself. It means that I try very hard to make the memories while I can because you never know what will sneak up on you and impact your life. And I try very hard to help anyone I can to understand this. Not just understand but to UNDERSTAND.
It means that I think very hard about drinking a can of pop that I haven’t wiped off.
It means that every single time I push the elevator button (especially the buttons where EVERYONE goes… the first floor lobby… the cafeteria floor…) I stop and think and try to push the button with anything that I can that I can either disinfect later or that I will throw away when I get off the elevator.
It means that I think twice about buying a glass of lemonade from one of the kids down the street at their lemonade stand… I think twice… and then I buy it and drink it and make a big fuss anyway… because there are some things that are just worth the risk of an infection, and the looks on their faces and knowing that they will probably remember that they can succeed at lemonade stand are worth it.
It means that I wear fingerless gloves what seems like all the time.
It means that once a week I get a shot in my stomach and have a headache the next day and I get an infusion for 30 minutes once a month.
It means I have very thin hair because methotrexate has caused a significant amount of it to fall out (it’s a chemotherapy drug after all).
It means that I have to think before I do things. I take into account how much my hands are hurting (about a 7 this morning for some reason) before I pick out the cloths I’m going to wear for the day. I may have to put on a couple pairs of shoes before I find the pair that doesn’t make my feet hurt worse because they are floofier than normal. I carry pills and gel with me wherever I go so, if it gets bad, I can fight back.
it means I get tired far easier than I should and when I’m exhausted I hurt almost logarithmically more than when I’m not feeling tired and stressed.
It means I wash my hands about fifty times a day and I sing happy birthday in my head twice every time I wash my hands… and I invest an incredible amount of money on hand cream (and I get to enjoy the smell of hand cream seasonally!)
I have to think more about insurance benefits than I ever dreamed I would ever have to.
I treasure skype calls more than I ever dreamed possible.
I’m way less apt to tolerate bullshit. I don’t have the time or energy for passive aggressive garbage or for someone who has nothing better to do than to dump on me.
What does it mean to me? How has it affected my life? It means that I have a whole new normal. I’ve learned to treasure people far more than things. I’ve learned to be gentle with myself whenever I can. I’ve learned to use my phone as a computer and a camera so I don’t have to carry any more than absolutely necessary (good thing it is about ten times more powerful and versatile than my first computer was) and I am drooling over the Samsung Note 4… I really REALLY wish I were closer to my upgrade date for my phone… I rely so much on technology every day… I become fixated on it.
How has it changed my life. Some for the better… some not so much. But it is certainly nothing like it was before.