Just Questions

I’m reminiscent today, and questioning life. How would life be had I stayed with my former employer, was able to fully complete my research and gather enough data to publish? The years, six months of direct observations,and kissing major hospital-VIP bum to end with unusable (for med journals and presentations,at leats) data. How would life have been if I’d been allowed to conduct the endometriosis research I originally started working on – the one I already had 9 online and 32 in-person patient data forms logged.

How different would it be if I could find the time to work on the endo patient book I’ve sketched out? I have the data – two types, in fact. I just can’t carve out the time.

How different would life be if doctor’s stopped suggesting Lupron or a hysterectomy for my endo pain. They need to stop listening to drug reps and read. Read the drug issues.

Some Happenings…

I have been neglecting this blog. I apologize. And I NEVER check my Endochick email. I just don’t have the time anymore.:(
I had meant to do a couple “Ask Endochick” posts, but those are being held back. Why? Well,find out in the “What’s Endochick Been Up To?” update.

1 The “Ask Endochick” posts will be a key feature in an upcoming book…. more info to come at a much later date.

2 Endometriosis isn’t really bothering me lately. At least, not enough, to warrant more posting.

3 This is probably the first summer in a very long time, where my dysautonomia hasn’t been a major issue. Granted, I know better than to spend extended periods in the heat, etc. But, those times when I must brave the elements are only giving me mild symptoms.

4 Epilepsy, on the hand, is a chronic illness I find difficult to manage. Sadly, with each med increase, I feel more and more like it will be a juggling act instead of a disease I can get ahead of – or even a grip on.

That is all I can think of for now. If you have questions, comment on a thread – I’ll see it.

Hacked

Wonderland

I feel I’m in wonderland right now – and not in a good way. I was started for procedure using Ativan (2mg) and felt woozy. I’m accustomed to that feeling as I take the need for most procedures. However, I was not expecting the negative trip I would be on after taking my normal seizure cocktail at home. By the way, the nurse said to do this. 

I now feel miserable like the living dead with shakes, nausea, headache, and vertigo. Just. Make. It. Stop.

Hello, Endo

It’s not that my Mirena is failing, according to the doctor. But, I am exhibiting symptoms that suggest the endometriosis has decided to party in my pelvis, once again.

Endometriosis is that spaz you didn’t invite to the party, of course, but who shows up anyway; the “friend” who always drinks too much and ends up dancing on the table, whilst stripping down to their knickers. It’s Naproxen and a heating pad to the rescue. And maybe, just maybe this time, endometriosis will take the hint, climb down off the table that is my uterus (just stay with me, people), and scram.

A girl can hope.

I’m scheduled for a pelvic scan Wednesday. Doctor suspects an ovarian cyst. It sure feels like crazed friend brought a date to the party. And he’s a wild type.

I’m not a partner, especially when it’s going down in my pelvis. That stuff needs to stop. Now.

From the shadows I emerge… (endometriosis awareness month)

I’ve been absent from this blog since, it appears, September. I neglected to check my Endochick email, as well. This wasn’t intentional, mind you; I’ve been overwhelmed. It wasn’t until today — until a good friend reminded me, actually — that I realized Endometriosis Awareness Month was 1/2 over with (or nearly there). 

March 2009, this blog teamed with ChronicHealing.com for an awareness event that weaved social media and blogging. Over 3,000 tweeters tweeted #MarchMadnessforEndometriosisAwareness. People Facebooked. There were daily blog posts devoted to the disease — from coping with pain, to treatment options, to talking with your doctor, to fighting for a cure. Men and women came together to shine a face on an isolating invisible, chronic illness.

But here I am five years later, too busy to fight the fight. My email — littered with Ask Endochick questions and pending comment notifications — sits unopened for months. And my blog, missing months of posts. I wish I had more time. I do. 

I wish, too, that I can find the time to sit and collect the patient safety data I have. For my ultimate Endometriosis Awareness goal would not be a month full of posts, as it was in 2009. But a navigation guide to keep us all safe in the endo world. 

Until I’m able to post again (and let’s hope it’s not long), keep up the fight! Remember, we are stronger together. 

A Quick Post Re: World Suicide Prevention Day

This is a quick post forwarding you to Jeanne Endo’s excellent post: Today is World Suicide Prevention Day 2013.  

I am hoping to post more of this topic myself later. As regular readers will know, this topic is one that has touched my family. It is also a very common search string for this blog. And that has been a deep concern of mine for a long time. 

I will go into this later. 

Thanks for reading and please check out Jeanne’s post. 

Endochick