ARRRRRGH.

I’m trying to schedule delivery of my monthly Avonex refill with my insurance company’s specialty pharmacy, but I CAN’T because the pharmacy at my neuro’s hospital fucked up my prescription.

This is further complicated because Thursday is my last day at my current job, and I usually receive the delivery at my office.

So time is off the essence. To me, at least. Everyone else keeps dropping the ball.

Here’s the break-down, so far:

1. In September, my insurance company’s specialty pharmacy informed me that my 6-month Avonex prescription expired* (WTF #1) and then faxed in a request to my doctor’s office to get them to send in a renewal.

2. A month goes by. I call the specialty pharmacy to schedule my monthly refill delivery.

I should have known better than to trust that things would be taken care of without me nagging people, but, well, they weren’t. The specialty pharmacy never received a prescription renewal from my neuro.

3. So I call my neuro’s office and am told the pharmacy at the hospital misread my chart/made some shit up out of nowhere about me needing 6-month labs before they could refill my prescription, so they put a hold on my renewal (WTF #2). Meanwhile, my regular neuro is on mystery-medical leave (WTF #3), so the neuro covering for her isn’t paying attention to any of this.

4. The substitute neuro finally sends in my prescription renewal on Monday.

5. I call the specialty pharmacy Tuesday to schedule my refill delivery. No dice. The lady on the phone says that it can take up to 48 hours for a faxed-in notice to be processed (WTF #4), and I should call back Wednesday.

5. I call them back this morning, and they still don’t have the prescription renewal from the neuro. What fax number did they use?, asks the phone dude. I don’t know—the number they always use?, I reply. He gives me the correct fax number and faxes over a new request to my neuro’s office.

6. I call my neuro’s office again and discover that they did, in fact, send their renewal to the wrong number—the 800-number I gave them to call the specialty pharmacy (WTF #5). Fantastic. I give them the correct fax number and the phone lady tells me she’ll have someone call the specialty pharmacy to put a rush on the refill.

7. Neuro’s office made contact with the specialty pharmacy and said they’re supposed to call me to schedule my refill delivery. Now I wait.

8. SIGH.

*Because my MS expired?? Huh?? Last I checked, this condition was CHRONIC. Also, my doctor pronounced me “stable” last November, so there’s no reason to review my current medication. So what the fuck were they thinking?

My sister had her MRI check-up yesterday and they found two new active lesions, one on her cervical spine and another on the left side of her brain. She’s been experiencing…

thingsorganizedneatly:

SUBMISSION:
#104#
A years worth of syringe, Etanercept, rheumatoid arthritis medicine.

Neat. I’ve thought about doing something arty with my used Avonex syringes. Maybe I will…. but more likely that I won’t.

thingsorganizedneatly:

SUBMISSION:

#104#

A years worth of syringe, Etanercept, rheumatoid arthritis medicine.

Neat. I’ve thought about doing something arty with my used Avonex syringes. Maybe I will…. but more likely that I won’t.

"

Two years ago, the 55-year-old singer was diagnosed with Multiple Sclerosis. Since then, it’s been an on and off battle of getting the right diagnosis, doctors giving her the run-around, finding proper treatment and dealing with the financial burden. Bouts of exhaustion have hit here and there, but Cervenka is determined to live like she’s always lived, which she explains taking two more drags of her cigarette. “I’m better than I should be doing,” she says.

"It’s a weird disease. I’ve been doing 16 years of neurology. One doctor in California diagnosed me, then did a bunch of tests and now is not sure. Regardless, I don’t have the money for medication, and I don’t have insurance, so I can’t act like I’m sick. I have to pretend that I’m not. I just ignore it. I do. It comes and goes. You’re fine, and then all of a sudden it hits."

"

Exene Cervenka ‘Ignores’ Multiple Sclerosis - Spinner

I’ve been meaning to check for news of Ms. Cervenka for a while, wondering how she deals with her MS while she’s on tour with X and her other bands. Sounds like she’s doing…okay? It’s a damn shame that anyone—let alone someone with her talent—should be without health insurance or the meds that could help to fight this disease.

Also, she’s married to Viggo Mortensen?? I did not know that. Nice work, lady.

yaelmarcus said: Hi there,

My name is Yael, from Cape Town, South Africa
My mother suffered from Ms for 12 years...

I am currently in my last year of studies at Vega (specialing in branding, marketing, creative and design thinking) My mother has been the inspiration for one of my final projects....

I have a question...
Would you be interested in trying alternative medication?
What are your thoughts on medical marijuana?

short answer: yes.

long answer: i’m on avonex, which is a sorta scary drug, but all of the drugs are kinda scary. they all come with side effects and long-term health risks. despite that, my philosophy regarding disease-modifying drugs so far (three years and counting) has been, “better safe than sorry.”

and if medical marijuana helps someone’s symptoms, then i’m all for it. i know a couple of MS sufferers who swear it helps their symptoms—things like tremors and stiffness. so i feel it should be prescribed to MS patients. but i also feel like it should just be legal, so… yeah.

i can’t say for certain that it has helped my symptoms, but it sure can make me think about them less—because when your whole body is tingly, you’re less focused on the parts that aren’t supposed to be tingly when you’re *not* smoking the weed. so it provides a bit of a mental relief, if not a purely physical one. :-)

good question, and sorry for my delay in answering. my best to you and your mom.

New blog post… mostly about my sister, who’s got a couple of new lesions. #MSucks #MultScler

Anonymous said: i still work but part time at home- can anything help feeling tired all the time

That’s a question for your doctor (or maybe a naturopath). The MS Society recommends lots of rest and possibly physical or occupational therapies.

I pretty much just sleep more, but on my worst days it’s still hard to get out of bed and get moving (but I’ve never been a morning person, anyway). We all experience this disease—and its symptoms—differently, so what works for me might not work for you.

And I still don’t understand why on Monday, I can ride my bike home (all uphill, BTW) from work and be energized by the exercise, and then on Wednesday, I’m gasping for breath and begging for mercy and have to walk the last couple blocks. Fatigue is dumb.

I’m tired, y’all. So tired, I updated my blog because it was easier than getting off the couch. #nonsense #MSucks

blowjobnovaks said: Hello, you don't have to publish this or even answer this
but thank you for this tumblr, my mum's had MS since i was born and i've been her carer all my life, it's a second nature to me. She's now stopped being relapsing remitting and is now progressive. It makes me sad when I hear other girls my age bitching about how their mothers want to go shopping with them or have a day out with them, when I would do anything to have one day where I could walk around a shop, buy clothes with her, maybe walk around a museum or art gallery with her, get a meal, and come home. But now just getting from her chair in the living room to the bathroom takes up all her energy from the day. And, i'm starting university in september and i'm kind of hoping i don't get in because if she falls or something and i'm not here, who's going to notice?

I'm sorry that this turned quite lengthy, i've just had a really bad day with her, she woke up in a really bad episode and couldn't move out of bed, and i saw you post something and i felt like this would be the only place i could really let everything out to someone who will fully understand me.

Thank you if you have read this far, i really appreciate it. Keep up what you're doing with this blog, it makes us feel like we're not alone, as carers and as the ones who have the illness.

hey, thanks for your message. i’m really sorry to hear about your mom. what you’re going through is unfathomable to me. i have MS, but i don’t have to watch someone else deal with this stupid disease (other than my sister, i guess, Dx 2000, but we don’t live together) on a daily basis. i just deal with it however i deal with it (with heaping piles of denial, mostly) and try to carry on as best as i can.

but what you’re living with as a teenage caretaker—man. i can’t imagine how terrified you must feel. for yourself and for your mom. my heart breaks for you. truly.

i can’t speak for your mom, obviously, but i think she’d hate to see you skip out on your life or put your life on hold for her. i’d think that if you have an opportunity to go to university, she’d want you to go. MS takes so much from us already.

speaking for myself, i hate to think of the day i’ll become a burden to my loved ones. i don’t want to be a stone tethered to anyone’s neck. not that that’s how your mom might feel, but i’m just referencing my own emotions about having a chronic, unpredictable and supremely irritating disease.

thanks for sharing with me. i’ll try to post more often here and at tinglyfeeling.com.

xo

"The thing that makes me the most angry is the fact that I have to do my treatment. I hate my treatment, I hate the injections… It’s tough to have something that’s always reminding you ‘Hey, you have MS.’"

Demitrius Omphroy