Confessions of a Health Activism Blogger

endosucks:

A good read! We are and must be our own best advocates!

Originally posted on Do I Look Sick?:

You know, for as much of my life as I’ve devoted to health activism and being open about invisible illness, I am still nowhere near where I want to be as an activist for myself. I’m really happy that I’ve helped so many people stand up and speak out for themselves and that I’ve brought a little bit of light to issues that are still very much in the dark. But every now and then I can’t help but let my own shortcomings get me down.

I thought I might feel a bit better if I got some of this off my chest, so I’m coming clean with you. These are my confessions. As always with “downer” subject matter, I’ll keep the mood light with gifs and memes.

Confession #1: I am still not open about my health with my parents.

Yes, my own flesh and blood. The people…

View original 446 more words

March 12, 2014 at 11:39 am Leave a comment

UPDATED: Ovarian Age is just a number

I waited all week to call and find out my anti mullerian hormone results — it was a crazy week at work and I didn’t want to add to the madness if the news was bad.

Good call.

I heard back from the fertility institute within an hour of calling today. And it seems my AMH level is poor … 1.4. The doctor is in Tallahassee and will call Monday to discuss plans/what this means, but they told me the number over the phone. Depending on which AMH scale they used, it’s either poor/low or basically menopausal. Waiting for the nurse to call back and clear that up.

I knew at 23 that my ovaries were starting to age; they could see it during surgery, but my reserve was good then. But I also had two ovaries still.

Did I miss my “chance” after all?

Am I a 30-year-old who blogs about this now?

They had these bracelets at the check-out desk at the fertility institute; I was upset when I saw it at first. Now I wish I had taken one. What I hope for … I’m still not sure.

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I was going to go to the driving range, but now I’m feeling pretty dizzy … may be a day to stay home …

**UPDATE!** The nurse already called me back, and the scale they use is ng/mL. So my number for AMH is 1.4 ng/mL — not a 100 percent disaster, but still not good.

The nurse is of course careful to remind me that there are other factors at play as to what this might mean: my age (which is young!), previous infertility (facepalm), and the number of follicles he could see on my ultrasound without stimulation (it was about 4 when I saw this doc for the first time). But still … there’s a big difference between 1.4 at age 41 and a 1.4 at age 30.

February 14, 2014 at 10:40 am Leave a comment

I’m back, I’m mad, and I’m not going to take it any more. Neither should you.

Just had a fun morning fighting Walgreens while trying to pick up my meds … Can anybody tell me when TYLENOL (acetaminophen) became a national health crisis? It’s in both my pain meds and now that’s a red flag. And OF COURSE they would call my soon-to-be-ex primary doc on a routine refill now that she has a problem with me. They’re trying to tell me I have to pick between which med to take. Is “fuck you” an option? Because that’s what I choose.

I had to request to talk to a second pharmacist without an attitude to get anything done, and then I got told “this is the last time we will fill this.” The first pharmacist actually told me to try at another location — that’s called pharmacy shopping and that’ll get you on a black list fast.

Here is the sign at Walgreens now. And folks were arguing with me last week that “pain patients are getting their pain managed” (says a non-pain patient). Call and write the FDA and tell them what you think! Measures put in place to discourage/prevent narcotic abuse isn’t solving the problem: it’s hurting pain patients.

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A good point was raised that too much acetaminophen can have terrible effects on the body, and it’s true — it’s not a fun way to die. But it’s not like I don’t know that. Every time I open a bottle of pills and that chemical cloud punches me in the face, I have fear in my heart — what is in this stuff? What is it doing to my body?

But you know who doesn’t get to decide they’re not going to fill my meds without evidence of any abuse? Pharmacies. They are NOT. MY. DOCTOR. and not the ones having to manage THREE chronic pain issues. Every few months they have the cramps about something different: the bultalbital, we don’t want you taking pain meds, etc. … now it’s Tylenol? Fuck them; they are incorrect to pressure people to “pick one to fill” as I was told today (it’s not that easy and they are for different issues) and encourage patients to pharmacy shop. And now I no longer have a PCP. My primary care called out of the blue and said they no longer want to write my pains meds. Once I’m out of these, I am OUT. My gyno won’t write pain meds; my former neuro and current neurosurgeon won’t write pain meds. So good luck to me finding both a new PCP AND a new neuro to see me this month.

While I do have the option to ask for my codeine med to be written with aspirin and not Tylenol, not everybody has this option with their meds. I do not think that pain patients who take their meds responsibly, as directed, not ODing, and absolutely need it in order to have any ability to get through the day should be suffering under laws, especially those made in Florida, meant to end pill mills/abuses but end up hurting valid pain patients instead.

A friend of mine in TV news will be pitching this story to her editor tonight. I certainly hope you’ll be seeing me on the news in the near future.

______________________

Taken from Endo Sucks! on Facebook

February 3, 2014 at 9:23 am Leave a comment

Go out and grab…

My mom’s quote of the day


My mother’s kick-in-the-pants, go-out-and-do-great-things-because-you’re-awesome, inspiring words of the day. So good it deserved to be made with sparkly text.

June 14, 2013 at 8:20 pm 1 comment

*UPDATED* I sold a bracelet and I’m pretty psyched

Behold, a garnet and silver stardust bracelet on elastic, made for the 8th birthday of one of my coworkers’ daughters:

Natural garnet and silver-plate stardust beads on elastic, y'all.

Natural garnet and silver-plate stardust beads on elastic, y’all.

My first bracelet sold since I was in college! I’m so proud. Hope she likes it! Happy birthday, Emma!

Email me or leave a comment if you want your very own pure gemstone goodness. :)

**UPDATE** From my coworker: “Emma loved the bracelet. She put in on immediately and kissed it and has not taken it off. … Dad did good and you helped. Way to go.” SO CUTE!**

June 4, 2013 at 2:42 pm 2 comments

Update on the little man

This is a follow-up to a post I made recently, detailing some health issues with my dog, Pippin.

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On one recent Sunday, I took Pippin to work. He’s the best in the biz.

Long story short: NO SURGERY FOR THE SMALL DOG! The ultrasound shows a nodule on his pancreas, and some of his organs were a bit enlarged, but there’s no cancer, no foreign object stuck in his gut, and absolutely no need for surgery, as the first vet had pressed so firmly into my brain.

Basically, his big tummy was full of air and food that was fermenting, which was the culprit in his gastro issues. He’s a small dog that’s getting older and the high-fiber vet food just wasn’t right for him. I put him on soft food of a different brand for a bit, but when that didn’t stop the gastrointestinal distress, we put him on the tried-and-true diet for doggy diarrhea: chicken and rice. He’s been eating it since with only one short-lived gastro issue over the weekend when we relented and gave him a bite of egg white.

No more panting all night like a cow in labor. No more shitting himself. No more tear-inducing farts that wake us up out of a dead sleep in the middle of the night.

My dog did not have cancer. My dog had to take a shit and change his diet. THANKS, VET NO. 1, FOR THE PANIC. I guess doctors of all shades can be total dipshits.

(more…)

June 4, 2013 at 12:03 pm 3 comments

The battle for the orange bottle continues

English: This is a picture of a Walgreens pres...

This is a picture of a Walgreens prescription bottle. It is not mine. Personal information about the patient is censored. (Photo credit: Wikipedia commons)

If it’s not one thing, it’s another!Ladies and gents, always remember that YOU are your own best advocate and you must be diligent when it comes to your health care. I called Walgreens’ automated service this evening to check the status of my refill orders. I’m glad I did before I got there, because I was surprised/pissed to find they were trying to charge me $160 for FOUR (1-2-3-4) Relpax pills for migraine. Thankfully the fix came easy this time: I called the pharmacy and found that, for some bizarre reason, they had run it through some random coupon program and not my insurance, causing it to be rejected. But I was assured that it will be its usual $10 when I pick it up tonight.

Sadly, this is not the first time for me or for any of you, and it will not be the last. While I know Walgreens staff are humans too, I can’t tell you how many times I’ve had to fix something with them. They fill the wrong med even though I use the automated system and enter the prescription number myself. They don’t send refill requests. They give me someone else’s medicine and give mine away. They’ve asked me out loud, in front of other customers, why I’m taking birth control. And they frequently run medications incorrectly so that insurance at first doesn’t cover it until I tell them, ask them, fight them, beg them to re-run it.

Not that  insurance is innocent: They’ve put up more than a few fusses and tried to charge more or refuse coverage on different medications, but will pull back and charge the co-pay amount when I’ve pushed back. You never accept a first offer, and you must never be afraid to push back for what you need or when you know something is not right — and even if you don’t know for sure, you ask, question, verify. Don’t just trust that everyone is doing their job to a T; make sure of it.

Your time, money and health are yours, and they are precious. Live it and love it.

May 21, 2013 at 9:51 pm Leave a comment

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