zeptember

I have no idea what’s going on with ya’ll lately. I’m finding out from other friends who say “did you hear?”

My life right now is even more focused on me and the endometriosis than usual, since for the past two cycles, I’ve been experiencing a bit of the old pain and some newer issues. It’s been 2 years since surgery already and of course, endometriosis grows back. I knew this before going into surgery, but I needed surgery to get an official diagnosis of stage III endometriosis.

My last day as a nanny was March 6, 2009. The family decided to put their child in daycare. I’ve been looking for work since that time. I’ve been turned down twice because of my illness. It’s rapidly getting to the point where I’m unemployable. I tried to file for state and federal (Social Security) disability on March 16 and 17 respectively. I was turned down over the phone by state and got a rejection letter in the mail from federal.

When I’m not looking for a job and interviewing, I’m researching ways to curb the pain, and researching material for the “Myths of Endometriosis” page on my site. This research seriously has me busy from the time I wake til after midnight if I don’t stop and remember that I need to be looking for a job and remember to call friends to say hi.

Today is the New Moon. I’ve been cleaning house (cuz even housecleaning stopped happening in the past month). Been putting only healthy food in my body today. Been moving calmly and deliberately and remembering to breathe and not feel so overwhelmed by life in general.

I’m just really bitter right now that I’m having pain again, not just pain mind you but continual pain. Before my surgery, I experienced moderate pain and fatigue up to two weeks before menses every month. Surgery brought that down to a few days before menses. This gave me back a week and a half of my life every month for two years until November 7, 2008, when complications from a bad ovarian cyst took hold, which left me debilitated for all of November. I experienced nine good days in December (not consecutive), then had a much better month both in January and February.

Now, something’s up again. Something is wrong. It’s not ovarian pain. It’s not a cyst.

At time of surgery, some endo was found right near the bladder. It was cauterised instead of cut out because the surgeon was afraid she’d puncture my bladder. Cauterising the surface tissue does nothing for the disease that’s deeper in. I know the endometriosis is growing and spreading again.
On top of getting pain two weeks before menses again, I’m now getting lots of bladder issues (frequent need to urinate but can’t, feeling of urinary tract infection (UTI) coming on). I’ve only had six good days this month (not consecutive). If a UTI were coming on, I’d have had it already. I used to get them all the time as a child (now known by endo experts as a possible early warning sign of endometriosis).

My annual gyn visit is in one month. I’m sick of doctors telling me I’m too pre-emptive with stuff, even though it turns out I’m usually right. But I’m going to wait on this one. I’m going to keep gathering evidence over on ReliefInsite.com and through my calendar and journal, and present it at my appointment, and demand my urine be checked for blood to rule out endo perforating the bladder. I’m going to get it definitively on paper how far my uterus is tipped (an ultrasound tech in December told me I have a tipped uterus but didn’t note it). I’m going to get it ruled out if possible if either A) endo pulled my uterus that way like it had done to my ovaries and/or B) the tipped uterus accounts for some of my pelvic pain (depending on how far tipped it is). If the discomfort worsens or doesn’t otherwise improve, I’m going to first rule out UTI and then demand Interstitial cystitis be ruled out, too. This means I will have to go for a cystoscopy and will have to have my potassium levels checked.

In the meantime, I’m reading about pH Balancing and may give that a go.

I want stability again. I want to just fart around on the web and chat with friends again. I want to be able to forget about my illness for a week or more at a time again.

Please say hi and reach out - sorry I’m so high maintenance in that regard.