I Will Not Suffer In Silence

Today started off badly. I was late getting out the door through every fault of my own. Then there was an accident on the freeway, which delayed me further. I got to work 25 minutes late and received a citation for being tardy. After four more of those, I get fired. So much for the fresh start we were all granted last week.

Three hours later, I tried to go to my appointment with the surgeon. I made it in record time only to find the door locked and a sign that says they’ve moved four days ago to a new location. This is the second doctor’s office to do this to me in the last two months (The last one was my neurologist and I barely made it to the new location before they closed for the evening, just to be told that there’s nothing wrong with my brain according to the MRI results. Why couldn’t they tell me this over the phone?!?).

I had walked 2 blocks from the parking garage already, with extremely sore legs and calves from yesterday’s 10k charity walk. So I began walking further, trying to gauge where the new location was. I got four blocks down before the friggin doctor’s office answered their phone. I asked if they had a parking structure near the new building. They said no, only street parking, which is metered. I had no coins on me. I still had to pay for the parking garage I was already parked in. So I ordered them to reschedule my appointment and not penalize me for missing today’s appointment because they went and MOVED on me in the last four days and didn’t tell me. I doubled back towards the parking garage, which was about another four blocks. So I walked probably over a mile all told (1.6km) on very sore legs. With no sun protection again because I didn’t know I’d have to be hiking all over the goddamned city to try to find where my doctor went.

I should have taken the hint when, driving up towards The City, my dashboard gave out (again, it does this all the time) and the trip meter read 23 miles.

Hail Eris. Fecking wonderful. Toying with me again.
The dash didn’t start working again til I got back near my workplace.

When I got in the vicinity of my workplace, I decided to have lunch, since I was back much earlier than I said I’d be, anyway. I took myself to a Thai restaurant, where I enjoyed a window seat, soothing Thai music, an empty restaurant save for the family working it (sorry to the family business-wise, but it’s what I so needed at that moment), some excellent soup, hot Thai tea, and Pad Thai with shrimp. That made things MUCH more bearable. I tipped heavily.

Got back to work, finished my day, drove my ass home. All told, I drove 124 miles (200km) today.

Now I’m in full lazy-ass mode. I know dishes need to be done and food prepped for tomorrow, but I’m to depressed to wanna do any of it.

Depressed. Yes. George is already due next Tuesday. So I’m PMSing. I want ice cream and chocolate and cheetos and pizza and … yep, george is due soon. More stressing for being off work due to the pain. More wishing for them to Just Fire Me Already.

*sigh*

And my face is still fried and hurty. Time to go wash it again, and reapply the aloe.

I did in fact miss the True Colors concert last Friday, and I spent the entire weekend zombified on Tylenol3 and Ibuprofen and Soma. I also missed giving a Full Moon Party because of my pain. I also missed an underground club night because of my pain. I went back in to work on Monday and was shocked that I was not escorted out for daring to have walked off the job before the end of my shift in dying fatigue and dizziness on Friday. I was told by my manager that she’d talked further with the director of the department, and he mentioned something about revamping the Paid Time Off rule, which MIGHT allow me to gain more days off. But they’re STILL not allowing UNPAID time off - you use up the paid time and that’s all you get. Unpaid time off is still a fireable offense.

I was fine by Monday and worked the week like a good soldier.
Monday night my man surprised me by reminding me that he’d bought us tickets to see the Deftones in concert. I’d never seen them before. It was a good show. A friend of ours kept going into the pit, but I stayed far away from that, still trying to regain my health after the weekend of george doom. Our friend was SO jazzed to be there that night. He’s met Chino before, and says he’s a very cool guy. Chino’s voice is pure sex to me, I swear. He makes my body blush with his vocal range. I knew I liked their stuff on CD, but, and I rarely ever say this, hearing the band live was EVEN BETTER. I was a happy camper to have seen the concert. :)

On Wednesday this week, the paid employees of the company got the day off for the July 4th holiday.
On the 4th of July, we hung out at a friend’s house on the island, and ate lots of MEAT and drank lots of booze. One of our friends brought mint juleps and OMG it was the BEST I’ve ever tasted.
There were lots of children present that day - the second event I’ve been to in the past 30 days where children of my very friends were skittering around, happily playing barbies with each other (there’s mostly girls and an infant boy). It’s strange that I’m at that age now where my friends have their own children. It’s not just a friend here and there - it’s several people I know now!!
I’m going to be 36 this year but I still feel like I’m in my early 20’s, so emotionally, it’s very strange to behold this reality before me, that my friends, also my age (some a bit younger, some a bit older), have gone on to have their own families. I wasn’t so afraid of the kids this time, either. This is the second time I wasn’t expecting to see children, but this time I wasn’t feeling the need to stand on a chair and go “Eeeeek!!!” ;)
We had no interest in seeing the fireworks on the 4th of July, btw. Going to see the fireworks means fighting through traffic and crowds and hoardes of drunken dumbasses. It’s like a festival of rednecks whenever I’ve gone to see fireworks in both Michigan AND California. Forgetaboutit.

I have to state at this point that between all the PMSing and holiday snacking, I’ve gained five pounds and I feel like hell physically. I’m not happy about this and I need to be strong and get back on a healthy sugar free and junk food free diet again.

I found out when I got back to work on Thursday that the temporary employees were told only two days before the holiday that they would have to come in and work a full day or be fired. WTF!
Also yesterday, a cow-orker took me to lunch so he could vent about work. Apparently the cow-orker who vented to me in the parking lot last Friday told this guy about how I’m being treated. So he came to me and told me he’s about to be fired too, if he misses any more work. We get 14 PTO days per year, but it accrues quarterly. So you only get between 4 and 7 PTO days per quarter depending on how long you’ve been working there. You can’t have it all at once. That’s why there’s a sudden mass firing going on every week - that and “performance issues”.
So my cow-orker was handed a form like the one I had to sign, stating he understood the policy and that he’d been absent beyond his allotted days. He snatched the paper from our manager and told her he’d have to discuss this with his lawyer before signing anything! HAH! I gave him the number to the labor board.

Today was the weekly review with my manager in which she told me once again how stellar a worker I am, that she doesn’t NEED to pull my phone calls because she KNOWS I do well on the phones, and how the one random email she pulled was PERFECT, and how based upon the metrics, I am ranked NUMBER 4 in the department out of 17 due to the shitload of calls and emails I process per day and per week.

And then, like every week, she sang the same refrain about my continued employment there; “it’s not looking good, we’re still talking to HR, but we don’t have anything to tell you yet.”
Every week it’s “you’re doing great, good work”, etc etc “but we’ll most likely fire you next time you have to miss a day due to pain…”
Every week I smile and nod and say “as long as you know i have a documented medical condition…”

My man made a genius comparison between my workplace and a quote from Princess Bride.
Oh how I love that man of mine. :)

And now, tonight, we are going to go see the latest Pirates of the Caribbean movie.

Only 12 more working days (two and a half weeks) until I may be fired for having to miss work due to george again. I can only hope. I just want this to be over. I just want them to do their thing to me so I can do what I need to do legally to them, and move on.

I just found this letter online:

Dear Parents, Partners, Friends, Families, Employers & Doctors:

We have spent the last years of our lives apologizing for being stricken with a disease we did nothing to contract, and we can do it no longer. We are asking - again - for your understanding. We are not responsible for not living up to your expectations the way you think we should. What you seem to fail to realize, is that you are just as much a part of the cycle of the disease as we are, because you are not getting the whole of our person and our capabilities.

We are not “lazy,” we are not “whiners,” we do not make the pain up “in our heads.”

We have Endometriosis.

We know that we look healthy on the outside, and that is sometimes harder to accept than if we exhibited the disease in our every day appearance. What you don’t see is what our organs look like on the inside, and you don’t see what living with it has done to our emotional well-being.

When we call in sick, it’s not because we need a mental health day or to “go shopping.” It’s because we can’t get out of bed from the pain. Do you think we like letting our careers suffer? Would it be easier for you to understand if we said we had cancer and looked the part?

When we get emotional and cry at the seemingly silliest things, or get angry for even less reason, it’s not because we are “flaky women.” It is because we are taking drug therapies to stall this incurable disease, or perhaps it’s because we have come close to the breaking point after dealing day in and day out with the pain for which there is no defined cause or absolute cure.

When we can’t have intimate relations with our partners, it is not because we don’t love you or want to. It’s because we can’t. It hurts too much. And we aren’t feeling real attractive right now.

When you, our parents, can’t understand that since you are healthy, we should be too, but aren’t - try harder. We don’t understand it either. We need your support more than anyone’s.

When we can’t go to family gatherings or accept social invitations, it’s not because we don’t wish to share in your fun. It’s because we feel like pariahs. You are all having such a nice time with your children and loved ones - we can’t remember the last time we had a nice time, or the last time we were pain-free. We can’t have a nice time with our children (some of us), because we were robbed of that chance before we were old enough to even care about having them in the first place. Do you think we need to be reminded of our battle with infertility by watching you and your babies? Or for those of us who were blessed enough to be able to conceive, do you think we want a constant reminder that we never feel well enough to spend enough quality time with our children, or worse - that we might have passed this disease down through our genetics onto our daughters?

When you married us, you didn’t know that we meant the “in sickness and in health” part literally, did you? We bet you were counting on at least a 50/50 split of that combination, rather than the 90/10 ratio you got. You are our caretakers, the ones who drive us to and from our doctors, countless surgeries, and emergency room visits. You are the ones who hear us crying in the night and see us break down during the day. You are the ones who wait on us hand and foot after surgery. You are the ones that go for months on end without sharing our beds with us. You are the ones that deal with our infertility right along with us. We strike out at you when we are hurting and angry, and you take it in stride. You are perhaps bigger victims of Endometriosis than even we are. You are appreciated more than words can ever say.

Don’t give up on us now.

As a medical professional, we are coming to you for help. We are asking you to do the job you were trained to do and ease our suffering. We do not need you to tell us that we are imagining the excruciating pain we live in, or worse yet, that it is “normal for a woman to hurt.” Keep up with your research, find the cause of this disease and better yet, find a cure! Stop taking the easy way out and drugging us into oblivion so that we will quiet down. We want answers and it is your job to provide them. You were the ones that took the oath to heal - why do we have to try to do your job? Do you understand what it means when we tell you that we literally can no longer live a normal life and care for ourselves and our families? We’re not drug seeking; we’re answer seeking.

Are you not up to the challenge to find the answers?

To those we have called friends all our lives, why have you deserted us when we needed your compassion and understanding the most? Do you see the selfishness of your actions? When we can’t get together with you, it’s not because we don’t like you or we don’t care - it’s because we are no longer capable of enjoying healthy leisure time. Our minds are consumed with our next doctor’s appointments, what surgery we are going to have next, and why we feel so sick all the time. This is not about you - it never was and it never will be. It is about us. Please try to remember what the term “friend” means.

Try to walk one minute in our shoes. We have fought a war for the better part of our years. We are faced daily with physical pains we can’t understand and mental anguish we can barely cope with some days. We face a society daily that doesn’t even know the word “Endometriosis,” much less the ramifications of living with the disease. We have to face uneducated and unsympathetic doctors who tell us “it’s all in your head”, and “have a hysterectomy, it will cure you”, or “get pregnant, it will cure you”, when we know that it won’t and have been dealing with infertility for the last however many years. Can’t you see that?

We have to fight to get medical treatment that insurance companies don’t deem necessary, or worse, we deplete our savings because aren’t able to obtain proper care unless we pay for it ourselves and travel thousands of miles to the rare specialists that are few and far between. We have to have surgery after surgery and subject ourselves to horrific medications just to be able to get out of bed in the morning. This is not a conscious choice we made, it was the hand we were dealt. It is enough of a war we wage just to try and live with some modicum of normalcy - don’t make it harder on us by not seeing the reasons why.

Endometriosis is a disease that affects all of us.

Take the time to learn about it and understand. If you can do that, and you can join us in the battle for a cure, then we can one day return to our old selves and live a normal, pain-free life. We can have healthy relationships with our loved ones. We can stop taking the painkillers that numb our suffering to a degree and become part of the living again.

Please don’t judge us and declare that we are all the things we are not - until you have lived with this disease ravaging your mind and body, you cannot speak on it.

Whatever doesn’t kill us makes us stronger, someone once said. While Endometriosis may not kill our physical body, it tries like hell to kill our spirit. It tries to kill every hope and dream we ever had of doing the things that make us happy. All of us are out here searching for a cure to put an end to the disease…and we are holding our heads high in spite of Endometriosis and fighting it every single day. We are asking you to take part in that battle and work with us beating it. Wouldn’t it be nice to have back the daughter, wife, friend or loved one you once knew?

Think about it.

~The Sentiments of Millions of Endometriosis Survivors Around the World~

That RULES. I am SO sending a copy of that to my employer when they fire me for taking too much time off work for my disease.

So I woke up this morning and felt much better. I had renewed energy. I decided to make some breakfast, hop in the shower, and get some chores done.

I know better than to fall into this trap, but every month, I do it anyway. Every month for 21 years without fail, during this calm before the storm, I always get it in my head that “maybe this time it will be different.”

But every time, it’s the same. George comes back to kill me.

So this morning, george had gone - no further bleeding. I felt great. I set about my day after breakfast and a shower; I sorted laundry and scrubbed the tub and part of the bathroom.

Then I felt a trickle. Then the shakiness. Then the pain.

Now my lower back hates the hell out of me, as does my uterus. My legs are very weak and shaking as the pain grows worse in my back and uterus, and the bleeding ramps up. I popped a Tylenol 3 and now I wait for the forced naptime.

And laundry will go undone until tonight - if it gets done at all.

I’m SO glad I don’t have kids to worry about on top of this crap.

The kids thing has been pissing me off to no end lately. I’m getting this crap from my cow-orkers, NOT my friends. Cow-orkers and other people I’ve talked to, such as neighbors and the like, who have asked about my condition lately. They keep saying they’ve heard that if one bears children, the pain and/or the disease goes away. I keep telling them THIS IS A LIE. But they’ve heard it on the TV or in the news or from a doctor or from a friend so it MUST be true! They literally argue with me and try to convince me I should impregnate myself!!!
I reply, quoting some of my friends, “There’s this little side effect from having children, you see. It’s HAVING CHILDREN. For the rest of my life.”

Of course, the response from the cow-orkers and other people on the street is invariably, “What’s so bad about that?!”

To which I reply, “I don’t WANT children.”

Depending on how far they push the subject, I’ll end up telling them one of two topic enders:

• I’m doing my part to help the human race die out (i.e. I’m not breeding) OR
• I’ve murdered twice for the cause (I’ve had two abortions in my life)

That always shuts them up.

One of my cow-orkers kept pushing the subject with me all last week. She of course is pregnant. She keeps saying things like, “I could never live with what you go through. Why don’t you try taking a different hormone? Why not really give having children a thought? I mean, if it will cure you…”

To which I always have to correct her - this disease is NOT curable. Also, why would I try taking hormones for the third time in my life if the first two times resulted in homicidal/suicidal behaviour?

WHAT THE HELL IS WRONG WITH THESE PEOPLE?!?

It turns out, these people are terrified of losing their jobs, and would do ANYTHING, including harming their bodies or bringing another life into this world when they can barely make ends meet as it is, JUST TO SAVE THEIR JOB.

Which is utterly hilarious, because THERE IS NO JOB SECURITY, ESPECIALLY IN THE TECH INDUSTRY.

The woman who bugged me all week? She got so paranoid that the management is going to fire her next (which is probable, they’re on a witch hunt there), that she gave herself hives right in front of me as she went off on a panic stricken tirade. She ended up taking the next two days off work for mental health.

I’m SO tired of having to explain the old wives tales to people, who won’t believe ME because they heard it from Experts somewhere. When I tell them my Grandma tried having so many babies to ease the pain, but the pain didn’t go away, they are incredulous. I tell them my Ma, the third-born, had to drop out of eighth grade to take care of her several other siblings, because her Ma’s pain DIDN’T go away. And in fact, Grandma would be bedridden for a week at a time from the pain!
I then tell people that Endometriosis runs in families.

So SCREW these people who think they know all about me and the disease I have.

Why do I even bother trying to continue to explain to the people who don’t have the disease who pester me so frequently? Blah.

At least the drugs are now kicking in. Time for a nap.