Big update (aka Sorry I Was Gone So Long)

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! 🙂

Why you shouldn’t give up on your dreams just because you’re sick.

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.

First day out in a LONG time

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.

There is a special place in Hell for those that abuse the disabled.

Wow. Just…wow.

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.

WOW.

The cruelty of humankind astonishes me sometimes.

Inspirational quote of the day

“Let yourself go with the disease, be with it, keep company with it – this is the way to be rid of it.”
Bruce Lee

Why an endometriosis specialist > OBGYN (and no, its not because they wait till you’re passed out to start sticking things in your vajayjay)

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?

An Endometriosis Awareness Etsy Treasury!

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!

Is it sad to be excited for a doctor’s appointment?

Just a short post today, because unfortunately I’m swamped at work. But tomorrow I see the endo specialist…yay! It occured to me that its rather sad to be excited about seeing a doctor – after all, aren’t people supposed to HATE doctors? Healthy people really take for granted the blessing of a good doctor who knows what he or she is talking about. Unfortunately, endometriosis specialists are few and far between.

I honestly don’t know what to expect from this appointment tomorrow. Do I really think she’s going to suggest anything other than surgery? I’m prepared for that eventuality. I think I want her to tell me there’s some natural way to manage this, that maybe with a change of diet and exercise and….SOMETHING, that this will all go away. My brain isn’t wired to deal with illness, so having to get used to being a “sick person” has taken a huge toll on me emotionally. It’s hard to keep a positive frame of mind when I’m curled up in pain. But then I remember that some of you have been dealing with this for decades, and I’ve only been dealing with this for a year.

Unfortunately the pain seems to be getting worse instead of better. The Lupron isn’t really doing its job anymore. I’m getting pain in my ribcage, lower back, and right shoulder so bad that its difficult to walk most days.

So a question for my endo sisters – what helps you deal with the pain? Any natural remedies, yoga, stretching etc? Comment here with your tips!

My love/hate relationship with Lupron

I’m surprised I’ve actually kept up with this blog!  Granted, this is only the third post, but I don’t feel like I’ve run out of things to say, which is always my problem with blogs.

So you all have already seen me mention being prescribed Lupron.  As many of you know, Lupron is a GnRH agonist, which blocks your pituitary gland from sending messenger hormones to your ovaries to signal them to produce estrogen.  This causes your body to stop producing estrogen and puts you into a temporary menopausal state.  Seeing as estrogen is what fuels endometriosis, you would think that no estrogen = no pain, right?

Wrong.  While Lupron has lessened my pain considerably over the past year, it hasn’t gotten rid of ALL the pain.  Pressing on my ovaries and lower rib cage feels like pressing on a bad bruise.  Also, I don’t know if your body eventually gets “used” to Lupron – it seems like the pain starts to come back a little earlier each time I get a shot.  Whereas before the pain relief would last up until it was time for my next shot, now the pain starts to come back 2-3 weeks before I’m due for one.  And over the past month or two I’ve had new pain that radiates from the back of my right thigh up through my hip and back and into my shoulder.

I also don’t know if I trust my doctor’s judgement, which is why I sought out an endometriosis specialist.  When I got to the end of my first 1-year treatment on Lupron, he prescribed another full year of treatment.  I had asked if this was safe, because even the drug company (and we all know drug companies will try to push their drugs to make money) said that treatment beyond 1 year was not safe.  He told me that there are these “new studies” out that say that Lupron is safe to be on INDEFINITELY as long as you are on add-backs through the entire course of treatment.  Try as I might, I can’t find a single mention of these “new studies” online, so if anyone here has heard the same, please link me to something!

And its not just that I get that feeling in my stomach that being on Lupron isn’t safe, its that I don’t think I WANT to be on Lupron any longer.  Lupron has given me some of the worst depression I’ve ever experienced.  It makes my teeth hurt, my bones hurt, massive migraines, and horrible exhaustion.  I’ve gained 15lbs during the course of treatment even without changing my diet.

Hopefully this new doctor will have something more to tell me.  I know she’s going to recommend surgery since my previous doctor was unable to effectively treat the endometriosis during my last surgery.  I’m hoping that there’s some alternative treatments out there that might be able to help me.

Excessively long intro post, part 2.

I suppose I should start with how I got here. I’m starting this blog a little over a year since my diagnosis, so there’s a lot of history to tell.

I first found out I had “female issues” in October 2010 when I was rushed to the emergency room after collapsing on the bathroom floor with severe pelvic pain. I was told, after an ultrasound, that it looked like I had ruptured an ovarian cyst, and that the ultrasound showed three more cysts – one small one on the left, and 3cm and 5cm cysts on the right.

After a visit to a regular OBGYN, we decided that the large cyst would need to be removed surgically as it was unlikely to respond to medical treatment. I scheduled my surgery for January 10 (insurance problems, ugh). The doctor said he would do a check for endometriosis while he was in there and would just go ahead and remove any he found.

In the weeks before my surgery, the pain became worse. Every single day I was confined to bed because the pain was so bad, only managing to get through work (I work retail) with the help of Percocet. And even then I was running at probably 25% of my usual productivity. I spent most of my workday crouched behind the register in tears. I had the horrible cyst-rupturing pain twice before my surgery – once in November and again the beginning of January.

My surgery date FINALLY came. After surgery my doctor informed me that he had removed two cysts – a 3cm on the left and a 5cm endometrioma on the right. He also told me that we had a BIG problem – I had widespread endometriosis scattered across all my reproductive organs and into the pelvic cavity. There was way more than he was prepared for, and as a result he could only laser off a few of the lesions.

When I came in for my surgery follow-up my doctor prescribed Seasonique to help control the cysts and endometriosis. He also told me about a medication called Lupron that was his “last resort” for severe endo patients, but said he would not put me on it unless all other treatments failed because of all the negative side effects.

One month later I was back in his office, still in debilitating pain – in fact, I think I was in MORE pain after the surgery than I was before! The surgery had done nothing for my pain, and Seasonique wasn’t helping in the slightest, so my doctor ordered the Lupron injections – 11.25mg every 3 months and a daily 5mg dose of norethindrone as a hormonal add-back for a year. (More on my experiences with Lupron in another post, because its a long story that deserves to be told).

So here I am, a year later. My doctor just ordered ANOTHER year of Lupron and I’ve just had my 5th injection – which is beyond what the FDA recommends.  I have an appointment with an endometriosis specialist in 5 days because there’s nothing else my doctor can do to treat me. And I’m still in pain – not the debilitating pain I was in before Lupron, but enough that I’m very uncomfortable. I also found out something else that my doctor failed to tell me – I have diaphragmatic endometriosis, which is extremely rare (only about 0.6% of endometriosis patients have it). It explains the pain I’ve had up the right side of my body, from the back of my upper thigh straight up to my shoulder, and the tenderness on the right side of my rib cage, which I didn’t think anything of because it isn’t “normal” endo pain.

I should probably end this post before it gets too long…more later!