I found out on my son’s 8th birthday that I have inflammation on the right side of my brain and at some point, I suffered a small stroke.
Apparently this is typical of Lupus.
I could hear my doctor talking, and I was writing down what he said…but I couldn’t get my mind past words like “stroke” and “right side of brain” and, well, “stroke.”
Maybe it didn’t help that I was scribbling notes on construction paper. Using crayons.
The doctor talked about things like my recent forgetfulness and coordination issues. The trouble and pain I’ve been having in my arms. Legs. Worse on my left. Those days when my left arm feels like a dead weight. The past weeks upon weeks where I swear I can’t see as well as I used to or misjudge the edge of the bed, each time bruising my left shin.
Sigh.
The real kicker here? I’ve felt better this past week. Better than I have felt in a long time. Figures, right? Luckily feeling well means I just have renewed energy to put on my battle gear once again. Not that I ever took it off. Damn, I was really hoping to take it off soon.
Eventually.
In the meantime, I’ll continue to write down everything so I don’t forget. I’ll visit more doctors tomorrow, adding neurologist to the list…and I will continue to focus on the things around here that really matter. That newly minted eight-year old, the soon-to-be six-year old, their Dad, and all the parts of my brain still capable of feeling their love.
The mojo, the prayers, the hugs…still workin’ them.
Oh Erin, this does just suck. i’m inspired that you’re striving to keep a positive attitude, even when things suck and you have to say “fuck you, lupus.” I think of you often and wish I were closer so I could offer more help. I’m always around for an understanding ear – living with chronic pain is lonely, but there are more of us out there. <3
I’m sorry.
Ok, the bad shit can stop now.
Sending so many good thoughts your way. I know you’re going to kick lupus’ ass all over the place.
Praying and thinking of you. Lupus can #suckit
Sending hugs.
My Queen,
Just stopping by to tell you that I think of you every day and my prayers and best wishes are headed your way each evening. Hang in there, dear.
( Sorry, not trying to be creepy, just couldn’t resist the My Queen…been watching Elizabeth I movies and it stuck. ) *teasing*
Diane
Now the healing can begin…
Oh, Erin. This sucks so much. I’m so sorry this is happening to you!
these doctors need to stop giving out bad news!
I’m so sorry. Loved watching you have some fun at Duran Duran. Wish I had a way to fix this for you. Sending hugs to all of you.
In spite of the wonderful-ness of spoons, strength, optimism, hope — I AM SO FUCKING ANGRY AT THIS EVIL, EVIL DISEASE.
Well, WTF. I just never expect you’ll get more bad news. Whoever said life wasn’t fair sure knew what they were talking about. You are on my prayer list every night. I wish I could do more.
You keep fighting !!!!!! I am right here with you.I will be by your side and listen if you want to vent…..
Oh gods, that is terrible news, but I guess looking at the small tiny minuscule bright side at least you know have an explanation for your co-ordination and memory problems.
Also, it is fantastic to hear that recently you have been feeling good. That is a really good sign and hopefully a sign of good, awesome things to come.
You are amazing.
Sending you good vibes and lots of prayers. Just keep fighting (I know you will)!
Well the swelling explains why we can’t see the Virgin Mary in your brain.
That blows. You certainly don’t seem like a stroke victim.
Just keep feeling good. You can beat this.
#SUCKIT, lupus. I want to tell lupus to take a long walk off a short diving board into the shallow end of a pool filled with skunk spray. I want to lock lupus in a room with Charlie Sheen, Gilbert Gottfried and Dick Cheney and only one comfortable chair for the rest of eternity. I want to force lupus to listen to Ke$ha on endless loop.
But since I can’t do those things, I’ll just send you a virtual hug and my fervent hope that you have better days ahead.
Sending plenty good vibes your way. Really #SUCKITLupus
I’m sorry. #SUCKITLUPUS
I’m so sorry to hear about this. I’m glad you have found out more about what is going on though. You and your family have my prayers.
I’ve been thinking about you a lot today. Hugs and kind thoughts.
Dammit.
I’d like to throw lupus out the window of a speeding car on a potholed road here in Detroit – (you know how crazy drivers are around here – they’d destroy it!)
Sending good thoughts and hugs and super smart doctor mojo your way.
Damn.
Go ‘way now, Lupus. Just go. 🙁
I think that cancer, lupus, and all those other horrible diseases can kiss my ass. In fact, I’d like to kick their asses.
Sending you prayers today and always.
Sending you strength to get through this next stupid Lupus hurdle.
That just thoroughly sucks. I am so sorry your brain is not cooperating with you. Many people don’t realize what an awful disease lupus is, how it attacks you where and when you’re most vulnerable. Someday we will understand auto-immune diseases, but unfortunately that day seems so far off, as western medicine is much better at dealing with discrete systems and simple immediate cause-and-effect diseases, and not ones that are cross-systemic and sensitive to multiple environmental factors… and as complex as lupus… in other words, the “female” diseases.
Hope things get better, soon. (And I write notes in crayon all the time.)
Thinking about you and sending many prayers for minimal long lasting damage. Stay strong!
You have my prayers and sending you some hug. Hope things get better soon.
thinking and Praying for you.
Sending hugs.