This is what three rounds of injections to your spine and neck will do:
To add to my sexiness as of late, I am now a hunchback.
Lovely.
Of course that would be the only tale I don’t know very well, so I should probably read it…or watch the Disney version. I’m guessing it didn’t have anything to do with a woman on the ass-end of her 30’s struggling with Lupus, did it? No…ok.
I’m also having these other awesome side effects, like muscle spasms and charlie horses almost every time I stretch anything. If I reach for something, charlie horse in my arm. If I chew, muscle spasm in my jaw. If I YAWN, charlie horse in the muscle under my chin. If I throw up from the kids’ stomach flu, spasm in my chest, back, and stomach while puking.
I also have swelling from time to time that pretty much renders my ankles and feet useless. And strangles my rings onto my fingers.
And then there is the “dead” feeling in my arms and legs that just hits out of nowhere. Suddenly my arms are 500lbs and I have to hold one arm, swing it, pick up my drink, and with one arm supporting the other take sip.
Oh, and the steroids are not ONLY making my face and stomach grow (no really, it’s an oddly distributed weight gain) but making hair sprout everywhere but my head. Constant tweezing people…constant. And when that isn’t enough, I bust out my husband’s little scissors.
This really is no way to live. I see my doctor Monday, and that’s exactly what I plan on saying. This really is no way to live.
The treatments are becoming worse than the disease.
There is hope though. The FDA has approved the first new Lupus drug in over 50 years. Maybe this one will make me skinny, my hair shiny, and my skin perfect. Or maybe it will give me horrible gas and cause my nose to bleed 24/7. Who knows.
In reading about the new drug, however, I was disturbed at some of the throw away lines reporters were adding to their pieces like- “the potentially fatal Lupus” and “a 10-year survival rate for patients with Lupus is now expected.”
Which makes me pet my neck. My swollen, swollen neck. And pet my belly. My swollen, swollen belly. And pet my cheeks. My swollen, swollen cheeks. And breathe. And thank modern medicine.
I don’t have much to say but this: do what you need to do to be there for your kids–hairy fucking hunchback with swollen ankles or sexy kick ass political commentator they don’t care, they need you
And I will be Laura. I will be. Am just exhausted by these treatments. It has to be get better. There has to be another way. Sigh.
I really hope that new drug is something different, and great.
Been thinking about u a lot over the last year. You are in my good thoughts and I wish all thebad away. You are an amazing woman and even now with all of this u r going though – u r helping others. You r brave. Xoxoxoxxo
My ex-Sister-in-Law has had Lupus for over 25 years. The beginning was rough and she was away from family living in NYC. Give yourself as much of a break as possible. It’s hard not do even what you may consider the “minimum”, but stressing out a body fighting off inflammation needs all the rest it can get. We’ve come through some pretty horrific medical dramas in our family and, believe me, we don’t remember or focus on the particulars of those bad times. They are behind us and we look forward.
Lupus, like cancer, is a thief…and a sneaky thief at that. I’m hopeful that the new drug will offter patients like you renewed hope and strength to keep fighting.
I hate when someone gives me unsolicited medical advice, so I hope I’m not offending but….. about the muscle cramps. I’ve had these for 22 years due to hypocalcemia (due to a parathyroid condition). It is always worse when I’m on steroids because they leech calcium from my system. Sometimes I have to take up to 20 calcium pills a day, and prescription D. Drinking lots of water also helps. Again, I’m sorry to be making suggestions but I just wish you the best and hope to maybe lessen at least 1 side effect.
Ow.
Ow ow ow.
Ow ow ow ow ow ow ow ow ow ow.
Ow.
OK. Had to get that out of my system before I said anything you hadn’t already figured out. The ten year survival prediction is deeply troubling, but I believe this is an average and you can beat it. I know my Mom’s best friend has had Lupus for going on 40 years and, as she heads into her 70’s, is still going strong. But I also know her affliction is mild compared to yours. Her primary symptom is the sunlight ‘allergy’. You are a strong woman and a fighter. Thank you for being willing to expose yourself in such a personal way when this fight is so painful to you at so many levels. I can’t imagine what it would be like to go from feeling gorgeous enough to go on television to feeling so puffy and out-of-your-own-body that you feel awkward at your daughter’s school. In a year. But I have a feeling a lot of women reading this CAN imagine because they are going through the exact same thing. By presenting your own battles, you are also giving them a voice and helping the rest of us understand.
Stand strong gunslinger.
Those reporters should be ashamed of themselves. Those sort of survival stats are way way out of date. I hope you get to try some new drug combos which work better for you soon.
My cousin has had lupus for 30 some years and is doing just fine… Why does the press always have to be an agent of fear?
Hang in there. You are amazing.
To entertain you (I hope)…It’s about the constant plucking. Mine is age / hormone related (I am 55).
Part of my morning ritual is trying to pluck my “beard” whiskers before I have the horror of finding one that is 2 inches long! And getting those suckers to come out is no picnic. One morning, in my dreamy, don’t want to get up state, I was dreaming my morning plucking ritual, examining my chin when I realized I was looking through green, leafy stuff….growing out of my chin! As I was getting to the “root” of things….what’s that? Well, by george, it is…it’s a turnip! Yep, I plucked a turnip right out of my chin! I literally woke up laughing.
I hope I gave you a chuckle too. Girl, I admire your spirit and pray you get some relief, and soon!
Well you know I understand fully.I hate the word fatal and the word 10 year but they are wrong.I am 30 years going at it and it does get better…sometimes for years and years.
You will find a way to make it and it does suck. I sleep in my laze boy and it helps with the sleeping stuff.I am sporting the lesions again and nose bleeds….just carry lots of paper 😀
and I need you to keep posting because you make me laugh and some days I really need it 😀
Ow, that looks painful. Not that what you want is more drugs…but I sincerly hope they’re providing some good pain killers!
I love that you’re blogging through this. I imagine so many get inspiration from your words. They see you doing it, living with it, surviving it and kicking it’s ass and they too wanna do the same thing, right!?
Dowagers hump!! I had one too. It’s the cortisone, for some odd reason.
ok, here comes a crazy lady. 🙂 I just happened upon your blog and was reading some of your story. I don’t know about Lupus and all you are experiencing and I can’t promise some miracle drug, but I can introduce you to a safe, easy, affective and proven detox that might give your body some leverage to heal. I don’t know. MIght be worth a try since there isn’t a “cure” out there. I’m so sorry you are going through this. If you want more information, you have my email address.
http://www.naturalcellulardefense.com/index.php?d=801931