Wow, I’m really sorry I let this blog go!
So much has happened lately that I’ve barely had time to sit still. First things first – I finally lost my job, indirectly due to endo. Not that I didn’t expect it – I’ve been at odds with my boss for over a year about how my medical condition affects my work. So she found some minor offense to fire me for since it’s illegal under the ADA to fire someone based on a disability.
HOWEVER – since what she decided to fire me for was something she specifically said it was ok for me to do, AND she allowed this breach of conduct with other employees (idiot), I was able to get unemployment. Apparently my company “failed to answer further questions” about my termination – so either their answers didn’t fly with the unemployment agency, or they flat out refused to talk. HA.
On top of this, they terminated my health insurance two days after I was fired. I’m in the process of getting added to my husband’s policy, but the idiot on the phone told us to send in the wrong paperwork so now that’s being held up. In the meantime, I’ve had to quit Lupron/norethindrone, which means I’m having hot flashes like crazy and my endo pain is slowly coming back. It hasn’t been horrible so far, but my ovaries have been a bit more painful than usual.
I’m not spending my unemployed time doing nothing though. Hubby and I had a long talk about our finances and future, and how another crappy retail job was going to put us in the same situation. We’ve decided that I should go to cosmetology school full-time! I was going to go eventually anyway, but being fired and getting unemployment provided a perfect opportunity. I start June 18 and graduate in May. As a color and hair extensions specialist, I’ll be making enough money so that hubby will be able to do his full-time teaching internship next fall.
I promise to start updating this regularly again! :)
I don’t remember where I read it – probably on one of the dozens of endometriosis websites I read on a weekly basis – but I read that you shouldn’t stop making plans just because you’re sick. Unfortunately, I do this a LOT. My entire life recently has had to be scheduled around my symptoms and my good/bad days.
This subject came up recently when my husband and I were discussing our plans for the summer. He has a million things he wants to do this summer, because next summer he has to quit his well-paying job for a year-long unpaid internship and we’ll have to be really tight with our finances. Every idea he came up with (Disney World, Virginia Beach, amusement parks) I replied with, “I don’t know, it depends on when I have my surgery or how bad I’m in pain.” Eventually he got frustrated and said, “I’m tired of scheduling our lives around your illness. Life didn’t end just because you got sick.”
And as much as it hurt to hear that…HE’S RIGHT.
I’ve had to give up so much because of endometriosis. Finishing my degree, for one – I had to drop my class because the start date was only a week after my first surgery, and I wasn’t out of bed or sitting upright for extended periods of time until 4 weeks before the semester ended. Having children is another thing that has possibly been taken away from me. Not to mention the countless hours spent writhing around in pain when I could have been DOING something, and the thousands of dollars spent in a single year on surgery, prescriptions, and office copays (at $45 a pop, sometimes up to 3-4 visits a month, that money adds up).
So no more. I’m not going to give up on having dreams and plans because of my illness. I WILL build my online business and make it successful. We WILL take at least one vacation or day trip this summer. And, eventually, I WILL get that degree.
Sorry for the lack of updates everyone…things have been kind of hectic with work and dealing with endo/IC issues that I haven’t had much time to update. I’ve been trying to snag some daylight hours to take photos for my Etsy shop (if you haven’t visited yet, click here to check it out!).
Hubby took me to DC yesterday to sightsee at the Smithsonian museums and Arlington National Cemetery. I was a little hesitant about going since I’ve had a lot of problems walking lately, but I told myself that I was going to do it whether I liked it or not.
And guess what? I made it. With lots of rest breaks but I MADE IT.
The cherry blossoms are beginning to bloom and it was 80° yesterday in DC so it turned out to be a gorgeous day!
Here’s a pic of my hubby, Will. I know he’s gorgeous, but hands off, he’s mine. ;)
Unfortunately I’m paying for all the walking because my endo pain is really acting up today, but it was worth it.
So as you’ve seen me mention before, I work retail. My bosses are both younger than me and treat this job like they’re working something important like Homeland Security.
For the past month or so, the endometriosis pain has been progressing to the point where I’m almost non-functional. Little by little each day my ability to lead a normal life is disappearing. Hubby and I were actually discussing today the idea of me using a wheelchair when we go out because I can no longer walk through a store for longer than five minutes.
My job is fully aware of my physical limitations and the way my disease is progressing. So today, I look at my tasks for the day:
– Put out stock of electrical items
– Sweep entire store
Electrical items are on the top shelf of our stock room. They require a LADDER to pull down. And I cannot even walk from the front to the back of the store without support, let alone sweep the entire thing.
So I take a glance at the tasks my coworker has to do. She has ONE task, to take small makeup items out of the Tupperware totes and put them out on the floor. All of which is a)lightweight and b) at ground level.
The cruelty of humankind astonishes me sometimes.
“Let yourself go with the disease, be with it, keep company with it – this is the way to be rid of it.”
I know I’m late posting this update, but I figured after the week I’ve had with pain, doctor’s appointments etc. that I deserved a day of total laziness.
For the record, the endometriosis specialist was awesome. She suggested another laparoscopy (of course) but gave me more options for management than my OBGYN. My regular OBGYN gave me Lupron indefinitely and said there was nothing more he could do to help me. The specialist said that post- surgery if my pain was better she could take me off Lupron and put in an IUD instead. If my pain is still bad, she said she’d give my body a short break and prescribe estrogen replacement for a while, then she could put me back on Lupron. She said that we’d avoid a laparotomy for the diaphragmatic endometriosis for now, and that she would try to take care of it laparoscopically first. Meanwhile, she’s sending me for a bone density scan since I’ve been on Lupron for over a year – she said my regular OBGYN should have ordered one ages ago, and that he should NOT be prescribing me Lupron indefinitely with no breaks. If the bone density scan comes back bad then she said she would take me off Lupron right away and do the surgery sooner. If the bone density scan comes back normal, I can wait until the beginning of summer to have surgery. She prescribed me Naprosyn every 6 hours, and she said if I was still in debilitating pain after that, that she would decide to do the surgery sooner as well.
She also says she has a pretty good suspicion that I have interstitial cystitis and that IC is what is causing a lot of my pelvic and back pain at this point. For those of you unfamiliar with IC, it’s an immune system dysfunction that wears away at the protective lining of your bladder, causing a lot of pelvic and back pain that is similar to endometriosis pain. She said it’s a common problem with endo sufferers (about 30%) so when she does my lap she wants to do a cystoscopy as well to check.
So, my loyal readers – have any of you had an IUD put in as a way to control your endometriosis? Did it help?
Just a drive-by post for now. I’ll update you all tomorrow with the news from the endo specialist – and its mostly pretty good!
For now, I just wanted to post the Etsy Treasury I made for Endometriosis Awareness Month. There’s lots of beautiful endo awareness items on Etsy…I might have to buy myself a bracelet (although that fluffy sheep heating pad is calling my name, but is waaaaayyyy out of my budget!)
EDIT: Apparently WordPress.com doesn’t allow custom Java script, so I’ll just post the link instead….
Endometriosis Awareness Etsy Treasury – Support a great cause!