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 

We MUST Persevere

Endometriosis — just like any chronic illness — is a battle; however, the battle with the E beast is unlike standard issue military battles, where generals shuttle troops along the field, call in ballistic strikes from continents away, or rely on media coverage and polling data to determine the next course of action. No, the war with endometriosis is a never ending. Even with the natural decline in estrogen and implant death that comes after menopauses, the emotional and internal (and sometimes external) physical scars remain.

And for the menopause-thru-hysterectomy units, these women have fought their own vicious battle. A battle fraught with early menopause and hormonal supplements. Some women weather the battle better than others, while many return from the war wounded and unrecognizable from their former selves. Depression. Migraines. Lack of a sex drive. Pain. 

We women with endometriosis command the front lines. In our daily lives we are bosses, teachers and police officers… We are important members of a constantly moving, ever-present society. We must be on 24/7, and often pain gets in the way. And yet, when we dare ask for reinforcements, we are pegged “seekers.” Or worse, this daily battle we fight is in our heads. 

Doctors shrug off our pain and downplay the war waging in our pelvis’s. They toss a new strategy to keep the battle going — antidepressants, NSAIDS… the list is endless. But until a covert mission (i.e. a laparoscopy) is ordered, doctor’s won’t invest in the battle. And getting a doctor to sign off on that mission can be near impossible — at least until you’ve exhausted their mini attacks without success.

Even with spy data confirming enemy presence, a doctor will sometimes be cautious in their approach. I’ve heard from various women with Stage IV endometriosis and their doctors prescribe a course of birth control. Only. Two of these women hadn’t had their endometriosis removed during the original laparoscopy. 

Some will say that the endometriosis war is a series of hellish battles. And I would agree. There is the daily battle. It’s wounds are depression, isolation and anguish — beyond the physical symptoms. There is the battle to diagnosis. It’s wounds are frustration (navigating the healthcare system is a daunting tasking — arm yourself with education and backup), powerlessness (doctor’s can be overbearing — remember, they work for you) and uncertainty (new medications come with side effects — keep a journal). Then there is the battle of knowing. It’s wounds are denial (even if you’ve been searching for this answer, it’s normal to question the diagnosis), anger (your body has failed you; doctor’s may have taken years to diagnose you or are suggesting a treatment you’re not comfortable with; or they believe you’re infertile), bargaining (this one applies to endometriosis patients who experience infertility, especially), depression, and finally acceptance.

But the thing about battling a chronic illness is that it’s never ending. And so are the stages of grief. Even once you’ve accepted it, you may find yourself angry that a new treatment failed; or bargaining for another surgery when the doctor insists it won’t help.  

Regardless of where we are in the war, one thing is certain: We MUST persevere. 

We must press for further research and back scientific endeavors searching for a cure. We must write our political figures and insist on protective legislation. We must stand firm and say NO to doctors when we feel uncomfortable about a drug or surgical treatment. We must feel empowered.  

We must win this war.