There are some weeks when I am running all over the place to different doctors, going for different tests, blood work, etc., and then times, such as the past few weeks, where there hasn't been too much going on as I wait to see some new specialists. It's been nice to not feel like a permanant fixture in doctors offices, but, in terms of blog writing, it's been hard to come up with writing material.
I imagine my followers really don't want to read "Man, lupus sucks. I laid in bed all day. The end."
And the truth is, sometimes that's all I do.
Lupus is a bitch of a disease. It's up, it's down, there's good days, there's horrible days, there's in between days. There are days when the pain and swelling is so bad that I literally cannot get out of bed, and some days when I feel like I could run a marathon.
Some days are this....
and many are this
There is never any way to tell which one of those I will be when I wake up. And unfortunately, lately it's been more frowny faces in bed type of days.
Lupus is volatile and unpredictable. It's like being in an abusive relationship. I hate using that analogy, but it is a perfect way to describe the disease. Things appear fine on the surface, but in the dark corners of your mind you know something is going to happen to set it off. It's unsettling, the anticipation of knowing what's to come, yet trying to pretend that you don't know what's going to happen.
And then, BAM! You do something to piss it off. You might not even know what you did, and most times, you never find out. You despise it, because you think about the person you used to be, the fun you used to have, the job you loved, the way you used to look. How hard you worked to get to a certain point, and how quickly it was taken away.
People don't call and they lose touch because they don't know what to say. They wonder, do I address the elephant in the room, or not? Do I mention the bruises, the haggard appearance, that the person that used to love dressing up and putting on makeup is now always in sweats. That the life of the party is now a homebody because she can barely walk up the stairs without getting short of breath.
For the most part, I take it in stride, and make the best of everything. I laugh, I smile, I make silly lupus jokes...
A priest, the Easter Bunny and a woman with lupus walk into a bar...
Not often, but sometimes, I can't help but wonder, why me?
Marlajan you always amaze me! I felt like i was reading my own post!
ReplyDeleteSincerely wonderful post. I think a lot of people are so scared and don't know what to do so they do the opposite of what is right. I sometimes wonder why me about the cancer that has affected my family. It just isnt fair. THat's just the truth.
ReplyDeleteI love you. Like, love love you.
ReplyDeleteI wish there was something I could do to take all your pain away for you. Situtations like this make me feel totally helpless....I can't image how it makes you feel.
If you ever need me, I'm here! You have my celly too so hit a sister up! We can wear sweats and no makeup together!
I think it's totally normal to wonder why me, and I think you do it less often than a lot of people would. Many days things suck, and you're out there being engaging and funny. Life is not fair, that's for sure.
ReplyDeleteSo many people don't know what to say, and with a long-term illness, they get frustrated with themselves and start staying away. I hate that.
I'm a new follower, and as I've read back through some of your posts I've thought "wow, she's amazing going through all this and still entertaining her readers." I still think you're amazing, but I'm glad to know you're also human. It's OK to ask "why me?"
ReplyDeleteAnd I'm very glad to see that even on your frowny face days, Princess Matzo Ball Honey Boo Boo Child is there with you.
Hi Gwen! Thanks for stopping over at my little space on the inter webs! And thank you very much for your kinds words. LOL, I'm most definitely human. Although if I had it my way, I'd be like Viki from Small Wonder... HAHAHAH. I have my "woe is me" days, but I try to keep them to a minimum. I mean, really, what it is gonna solve?
Delete<3
Hey you, I'm rooting for ya! Hang in there you tough cookie!
ReplyDeleteHi MarlaJan,
ReplyDeleteI found your blog while doing some research on lupus. My doctor is highly suspicious that I have lupus, and I have been waiting impatiently for most of January for some lab results... After a call to my doctor's office yesterday, I found out that he has the results, but won't share them with me until he has a chance to look at them first... whenever that may be.
Anyway, while waiting and obsessing, I have been reading your blog, and I want to let you know that you have inspired me with your steadfast courage and unyielding sense of humor in the face of this crappy disease. I admire and appreciate your honesty. You have never sugar-coated the effects of this disease. When you have bad days, we hear about them, and when you have good days, we hear about those too. I feel like I have received some "real" information from your blog, and that has been a huge comfort. Therefore, I just wanted to say thanks.
I hope you feel better soon.