I Will Not Suffer In Silence

Came home from work last night and cried again.

I’m at the point now where I want to cry just thinking about having to go back to work the next day.

The good news is that I’ve hired a health counselor to assist me in eating properly, getting the right exercise, and dealing with my stress.

Speaking of exercise, I started exercising again – been lifting 5lb hand weights and doing situps before bed for the past couple of nights on my own – without the health counselor’s advice.

Today at work, my neck locked up *while just sitting there* talking on the phone to a customer. The warm pain dripped down my left shoulder, down my arm, and pooled in my elbow to make it tingle. I popped 600mg Ibuprofen on the spot and began slowly working my posture to try to “pop” the pinched nerve out of its crimp (it’s worked before).

Now I’m on muscle relaxers. Go me!

I’ll uh, be speaking to the health counselor to figure out WTF do do instead of situps and hand weights, since those seem to irritate my bulging disks in my neck. I know she’s not a gym trainer but any advice is a start. My man recommended that instead of situps, I try leg lifts, for example.

I missed work on Wednesday, and my boss was not happy that I was taking another paid day off.

I went in to work on Thursday, due to my father’s voice in my head, “go to work even if you have to crawl in” – because I am afraid of losing my job because I do not have enough money in savings to live off of for even one month should I become unemployed.

At 1:42pm on Thursday, I messaged my boss:

(13:42:12) Me: despite having taken medication twice today, the pain is ramping up again. do you know if [the ticket tracking system] *can* work with a Mac and then i could work on mails from home? otherwise, i don’t know what to tell you if i can’t finish out the day.
(there was mandatory overtime going on on both Thursday and Friday again)

(13:43:50) My boss: I tried using the Mac downstairs and it doesn’t work with it.. lemme talk to [the director of support] and see what we can do

(13:44:24) Me: thx

(13:44:51) My boss: You said you have a dr appt tomorrow?

(13:45:23) Me: yeah unless they give me my test results over the phone today. but so far no call from them. i can reschedule if i have to.

(13:45:50) Me: it’s not related to the current pain issue. it’s ongoing for my back issue (which is preventative, hasn’t been an issue)

(13:47:13) My boss: ahhh.. ok.. that’s fine.. so about the pain issue, is there anything that can be done to prevent it or something that can help?

(13:50:33 – notice the time lapse because i was too stunned to reply) My boss: I just worry because you only have 1/2 day PTO left for this quarter, and you have a big vacation in october that you want to take. It would suck if you used up all of your PTO because you aren’t feeling well.

(13:55:17) Me: there is nothing that can be done to prevent the pain. it’s an incurable disease of the uterine tissue. surgery didn’t help it. hormonal treatment made me psycho and i almost didn’t make it. what’s left is pain management, which means pills and yoga and whatever i can do to ease the pain. the pain is with me. it’s part of my disease.

(13:55:32) Me: the PTO i am not worried about. i will take unpaid time after the PTO expires.

(13:55:45) Me: the only problem lies with whether [the company] wants that.

(13:56:01) Me: [the company] knew i had a health issue that i was going in to surgery for. i was open about it.

(13:56:06) Me: they chose to hire me.
(13:56:13) Me: *shrug*

(14:00:51) My boss: I see. Well, I’ll talk to [the director of support] about the OT situation. Let me know if you need to leave before you can complete your tickets. As for the pain, I’ll talk to [the director of support] about it again, since we don’t want it to effect your job here and we want to accomodate as much as we can. Thanks.

On Friday, the team meetings and one-on-one meetings with the management were re-instituted, and I wondered if I would be fired for having a health issue, just like the book scanning job was going to do with me before I found out about their plan and quit rather than be humiliated.

When I went in to have the one-on-one meeting, my boss said she’d talked my health issues over with the director of support, and she offered that I could use the family leave option to take a month off of work, and i quote, “to heal yourself”.

My jaw dropped. Has this dolt not been listening to me? Did she not plainly see my chat comments on Thursday, in which I wrote very clearly, “it’s an incurable disease”???

I composed myself and told her again. I described the treatments I’ve had to date. I went into detail for the first time about the hormone treatment and how I came this close to being committed involuntarily to a mental institution because of the hormones, and that this is the second time in my life that I’d tried hormone treatment and had the same mental health reaction.
I told my boss that my only options are more surgery and pain management, and I spelled out what pain management means, and told her again that the pain cannot for the most part be prevented.

She told me she’ll have to talk to the director of support again, and she hoped I understood their predicament in this. I replied with, “yes, I know, you have a department to run and absences are intolerable.” She nodded.

Still, she let me know that I’m one of the top three performers in the department, and she told me that they will at least try to accomodate my issue, but told me I must understand if it does not work out. I told her I understood.

So that’s where it’s at, folks. I have no idea, this being an at-will company in an at-will state, if there’d be a lawsuit I could pursue for discrimination. That’s their lovely out.
Besides, filing a lawsuit would mean I WANT to be retained at that fecking company. And trust me, I don’t want to be retained.

My boss told me in so many words that visiting my family in October for two weeks is now out of the question because I’ve used up all my paid time off. I wasn’t troubled by it – I won’t BE at that company come October.

I came home and had a serious talk with my man. We’ll be combing our finances and creating a budget to see if he could support me with a part-time job or no job at all, because I’m tired of going through this HR issue with every company I work for.

Thank the gods for my man – I love him SO much.

George showed up yesterday afternoon, a full week late. This was the first time in many, many years that I wasn’t worried about being pregnant. I knew george was late due to having come off The Pill.

My first word was, “Finally!!”

But then the pain started to set in within the hour.

I let my boss know that I might not be able to finish out the workday. I was wrong – I got through the rest of the workday. I even stayed 45 minutes overtime, in order to empty my inbox and get through all of my escalations, in case I had to miss work the following day due to the pain. I sent an email to the support managers group to let them know I might be out sick the following day.

Soon after sending the mail, the director of Support came by and said, “You can’t afford to be out sick.” He had a slight smile when he said it, so I know at the very least he was half joking. He is known for his joking and teasing. But the timing of his comment was bad, and the comment itself was uncalled for. I wanted to reply with, “Can’t afford meaning financially or meaning job-security-wise?” But alas, he is the director of Support, and my reply would be out of line and I’d be further red-flagged due to attitude problems.

Instead, I replied with comments that the only option left for me is more surgery for my condition. I told the director that it’s very difficult for people around me to accept that I’m sick, because they see me sitting at my desk without a visual sign of malady, talking on the phone in pleasant manner with customers.

The director understood, because he replied with, “But inside, you’re dying.” I nodded. I know he understands all too well – his wife has the same disease as me.

But that doesn’t mean he’ll keep me on as his employee just because he understands my disease. He has a department to run, after all, and I feel like I’m screwing up his numbers by missing work several days per month due to my pain issues and doctor appointments. It’s an at-will company. They can let me go at any time for any reason, “no hard feelings”.

Earlier in the day, out of the blue, my immediate supervisor asked me if I still planned on taking a trip to Portland at the end of this month. I was stunned. I said ‘yes’.
She must have known I was thinking WTF? Of COURSE I still plan to go to Portland! I’ve had this trip planned for months!, because she elaborated on why she asked her question. Apparently, I’m running out of Paid Time Off (PTO) days due to all the time I’ve taken off for pain and doctor appointments.
I told her, “well, if it turns out I have to take time off for pain or other reasons, I’ll take it unpaid if I run out of PTO days.”

She wasn’t happy to hear that, but that’s too bad for her. They act like if I run out of PTO days, I won’t be allowed to take a day off – like I’d be committing some sort of felony. Well screw them. I have not one but two vacations planned this year that I told them about BEFORE getting hired. If I have to take the time off unpaid, I will. Screw their bullshit. They KNEW I was scheduled for surgery before hiring me. They KNEW about my disease before hiring me.
NOW suddenly it’s a problem for them. Screw them. I don’t plan to be there, either by their own doing or mine, by the time my second vacation rolls around in October.

When I finally left work for the day, I took an Ibuprofen 600mg pill. I wanted the Tylenol 3 but that would make me too high to drive home.
When I got home, I took a Tylenol 3 for the pain. When my man got home, I vented to him and cried about the insensitivity of management at my job. We talked again about me taking a lower paying job or a part time job closer to home.
Our next step is to go through both of our budgets to see if this really can be worked out for me.

This morning I was awakened at 5am with searing pain and flooding bleeding. Of course I took the day off work. When I called my boss to let her know, she told me she’s going to have to go through my PTO and she may have to dig into my “mental health” days to approve the time off. I told her to do what she needed to do.
Again, WTF. I will take the goddamned day off no matter how you mark it, lady. I’m not well. I’m bleeding like a stuck pig. I can’t even sit upright in a chair.
I’m typing this journal entry from bed on a laptop, high as a kite on Tylenol 3.

GAH. I’M SO PISSED OFF.

I’m not just pissed at work. I’m pissed at george.
I know that the aim of surgery was to provide me with a diagnosis, not a temporary cure. But I also know I’d hoped for temporary relief as a result of surgery. That little bit of hope crept in and allowed for me to be let down. I feel so let down.

Since surgery though, I’ve felt the need to seek out other people like me. I never bothered to do this before surgery, because I felt like I couldn’t say for sure I have Endo. Now I have the license as it were. The official diagnosis.
I’ve been reading life stories of people on various Endometriosis forums. I’ve cried at the similarities. I’ve become angry for women I don’t even know, who are going through worse injustices with family, partners and workplaces than I’d ever experienced.
I am very lucky to have a man who truly sympathises with me and who is there to care for me when I’m ill. Some women don’t even have that.

I want to create yet another forum. I want to create an entire non-profit organisation built around legal advice, medical articles, the disinformation surrounding hormones, pain meds and old wives tales (“get pregnant, that will cure the Endo!” is STILL being used by doctors today!!!). I’ve been searching the web and so far all I see are support groups, which in and of itself is a good thing. But I don’t see an information center yet. Maybe it’s there and someone else has realised the dream I have. If not, I’m going to have to invest the time and energy into creating this.

I saw my masseuse last Saturday. She said I’m still in a place where I’m letting the disease define me. She is right. She says she doesn’t want me to manage the pain. She wants me to overcome it. She is right.
She suffered for years with bad Endometriosis. She had a hysterectomy, though. I don’t want to do that because I don’t want to take Hormone Replacement Therapy (HRT). I view that as playing into the male medical establishment – taking their dangerous medications, which cause worse things to happen – like cancer, strokes, blood clots in the legs, and mental health issues. If I can’t even handle the birth control pill without becoming suicidal and homicidal, what makes you think I can handle taking HRT?!?!?

I’m glad she’s able to have recovered. I don’t think I can go the same route she went. Therefore, I’m letting the disease define me.

This makes me very angry. I’m tired of proving to people that things they suggest won’t work for me. I’m tired of being told, “oh just try it” and then my life becomes a worse hell because I’ve “just tried it” to appease non-believers.

I want to say everyone just leave me alone.

I have an incurable disease. I have the right to bitch about it. I have the right to a pity party. I have the right to be sad and mad. I have the right to choose what pain management road I will go down. I have the right to refuse advice. I have the right to do what’s best for me.

So george was due Tuesday and never showed up as far as bleeding goes. But he had me bedridden most of Wednesday, and cramping at work on Thursday and Friday.
Friday also started the ass pain.

With the hormone therapy, I had one month free of george and ass pain and all those nasties related to that bastard, but at what cost? I nearly ended my life. I won’t try a different hormone again, just to go through the gradual brain changes that I don’t even know are ganging up, which make me want to kill myself.
No. Twice in my life is two times too many on the damned hormones.

So I wait for george to show up. I hold my breath that the pain I’ve had so far is the extent of pain I’ll endure, and that the surgery really helped me. But truth be told, my gut tells me that once the bleeding starts, it’ll be the same hell as it ever was.

I know I do not have any other choice in life, so I would rather have that hell than be suicidal.
Here is where I get all with the reincarnation again:
This is what I signed up for. I did this to myself. I can blame my mom for bringing me into this world with her shitty Appalachian genes, but it’s not her fault. I chose her to be my mom because I had shit to learn. And boy howdy am I still learning it.

Why do we continue on once we have an inkling of what we’ve done? When we’ve realised that we’ve come here to learn a lesson – when we finally Awaken?
Well, not all of us do continue on. Some of us say we’re not up to it, that we can’t handle it AGAIN, that it wasn’t quite the mission we signed up for.
I’ve done that route and pressed the reset button in so many lives that I’ve developed a strong stubborn streak to just get through it because it has GOT to be better than last time. It has GOT to propell me to something better. This is how I got through high school. This is how I got through college. This is how I got through living with my mom and brother, living in the “unibomber shack” as I call it:

And I credit my dad for this strength. I chose him for that reason.

Before I leave this incarnation, I will have learned how to get past the bad karma I create, instead of just creating more, saying ‘BAH!’ and pressing the reset button when I can’t handle the pressure anymore. I will take this into the next incarnation. I can do this. And having the pain I have is part of this lesson.

Now, all that psycho hippie woo woo shit(™ Justin) aside, I often wonder if the mindset I have created on this whole reincarnation thing stems from my fundamentalist upbringing.

People who are raised in cults (and christian fundamentalism IS a cult) often end up being susceptible to other cultish mindsets throughout life, even after they’ve escaped.
So I wonder if after being raised with the idea that menstruation is punishment because of Eve’s curiosity – because she took the forbidden apple and was punished by G*d to bleed monthly forever more… I wonder if I have developed the idea that I’m here in this incarnation to endure the pain of endometriosis is an extension of my fundamentalist upbringing. Enduring == punishment == karma and all that.

People raised in cults often need strict rules and structure to replace what they had, once they’ve escaped said cult, otherwise they feel lost, helpless and vulnerable. I am no exception. Therefore, I have wondered if finding Tibetan Buddhist principles appealing in the mid 1990’s, along with Wicca (laugh all you want, but I fired Wicca by 1999), is just a natural next step in recovering from the upbringing I had, and perhaps there IS no next life, and the idea of reincarnation is just as silly as all of Christianity’s ideas.

And if it is, then why am I still here, dealing with job after shitty job, financial instability since birth, and 21 years of wrenching menstrual pain? Why not just say ‘Aww SCREW IT’ and press the reset button?

Because I’m too attached to people, places and things.

And well if I’m going to become a good little Buddhist, I’m going to eventually have to learn how to not be attached, and yet enjoy just being.

This is the part where you think of ME and BUDDHISM in the same sentence, and the next thought through your head should be of Edina from Absolutely Fabulous.

ME? A Buddhist, sweetie darling? Chanting as we speak? I’m every bit as hypocritical as Edina. Every bit.

I guess the first step is Knowing.

And knowing is half the battle. :p

Annnnnnyway….. back to george. Yesterday I had a sudden hypoglycemic attack. I realised that last month while on the hormones, I didn’t have such attacks. So I know for sure that what I read in one of my endometriosis books is true – that the hormone-rich uterus can screw up one’s endocrine system and cause hypoglycemia around the time of menses. It’s proven now for me. I’m going to have to learn to like all the hippie foods recommended in the endometriosis books.
On that note, the lady who lives in the unit directly behind ours is a practicing health coach, now. I’m scheduled to meet with her next week for a free health consultation and get dietary tips. I will once again be trying to manage my pain through diet. I can do this.
I will also be joining the gym my man attends, and I am going to find a yoga class to sign up with. I can do this.

I can do this because I can’t go on just waiting for the pain to hit and overmedicating with dangerous prescription meds. I’ve wrecked my body enough over the years with medication.

Don’t get me wrong, now. Underneath all this ‘can do’ attitude, I’m still screaming at the world, “IT’S NOT FAIR!!!!”

But merely screaming and pounding fists never really gets one anywhere, does it?

Just woke up from the second of two nightmares in a row, nearly in a panic attack, complete with being unable to breathe and wanting to cry hysterically.

I raced through the house looking for my man, but he’d ony just left for work seconds before I awoke.

I’ve just popped 1mg of Lorazepam to calm the hell down.

This is what my life is becoming? Again?

I stayed home today on account of mental and health problems. The mental is due to work. The health is due to george. George has not shown himself physically, yet, but as of yesterday morning, I began having cramps and feeling run over. I woke up in the middle of the night feeling like I’d been in a car accident, because my entire body was stiff with pain. The worst of the pain was my lower back.
I usually only get upper back pain due to the bulging disks in my neck. But the lower back is monthly and means george is coming.

The entire body being locked with wrenching pain – that’s new. Probably also due to work stress.

The nightmares were probably a mixture of said stress along with me having taken a Tylenol 3 last night to ease the pain and get to sleep. Every time I take Tylenol 3, I’m guaranteed to have nightmares.

In the first one, I was in the house I live in now, only it was laid out differently. I was helping care for an elderly man who was related to me distantly on my dad’s side of the family, and who was also my campaign manager.
(…campaign??)

A nurse was in the house as well. She either came by daily or was a live-in, and administered some respiratory drug intraveinously each day. The drug looked like a small inhaler and was inserted into a pocket attached to the guy’s I.V.
The guy was in his seventies and was a smoker. By this stage of his disease, he was kept in a glass case on the floor. He had a twin sized mattress to lay on for his long, thin frame.

I saw him smoking IN the glass case, biding his time.

Well, his respiratory drug ran out, and the nurse was in the other room watching TV or something. I ran to get her as soon as I realised the drug had run out, because the old guy started thrashing about.
At first she was disaffected by my anxiety and took her time getting to the living room where the guy was. Then she saw him thrashing and leapt into action.
Only…she couldn’t find the replacement medication cannister!

We tore apart the house looking for the medication, but she’d let him run out! I ran outside with the cordless phone, calling 911.
I got a woman on the line who was as disaffected as the nurse inside, until she realised the guy was in cardiac arrest and actually dying. Then SHE got hysterical and said an ambulance was on the way. I hung up and heard an ambulance get closer and closer, then the sirens stopped somewhere nearby…the ambulance was for someone else.
I waited. I didn’t want to go back inside to see the guy dying.

Another older gentleman lived in the unit behind ours and had heard commotion. He was now trying to help the nurse, and seeing that she’d failed his friend badly, took the guy out of my house and brought him next door into his house. I didn’t see the nurse after that. I went next door and saw the guy slumped over and my neighbor trying to hold him up. Just as I was backing away crying, the guy woke up, stood bolt upright, and staggered towards the front door in a daze, then slumped again, but was still conscious.

I ran outside again and got to my car. For some reason, my cell phone was in the car. I used the cell phone to dial 911 and got some young-sounding guy on the line. By this time I was angry and hysterical and yelling and swearing a lot. The guy was rude back to me and asked me to think of him right now – the fact that he has to listen to people like me and by the way, he CAN’T get me an ambulance right now. Turns out he was in his own private ambulance and was busy. I hung up on him and pressed the red button on my cell phone. This auto-dials a programmed-in emergency number. Perhaps I was dialing the wrong thing before?
I can’t remember what happened next – I think I kept getting disconnected or put on hold (in real life in the U.S., that is the real actual 911. You get put on hold. I shit you not).

I ran back to my neighbor who was already on to what my next plan was. He was trying to carry the guy out to his car so we could drive him to the hospital. The hospital is only a few blocks away for fook’s sake. The neighbor was too weak to carry his friend, so I did it. I held the guy like a toddler on my left hip and slumped over my left shoulder, and carried his long, lanky, draping frame to the neighbor’s car. We all got in the front seat – one of the old bench style seats in the old big cars. I belted myself and the old man in and the neighbor drove us to the hospital. I held onto the old man the entire way.
That’s all I remember.

In the second dream, I was campaigning for local office. I can’t recall in what capacity – something important enough to have the media dogging us. We were all gathering at some person’s house, where both parties would take off for an important farm town to make our speeches.

The guy running against me was a bit older than me and dressed like a company CEO. Whereas I was dressed in a long black velvet skirt and a blouse of some sort, also black.
We sat in the small living room of a farm house, waiting. I asked for whisky to drink to calm my nerves. Everyone gave me strange and/or disapproving looks, because I’m female.

I remember thinking, “how did I get myself into this? I don’t want to go through with this. I can’t argue against that guy! I have no talking points! I have no campaign! This will make a mockery out of me. How did I allow myself to commit to this?”

The company man wanted to ride into town on a tractor to show his loyalty to the farmers. I had no special plan, but ended up riding behind him on a day laborer’s truck. I guess that would be the better of the two, wouldn’t it?

After our ride into town, we ended up in another small farmhouse living room, laid out similar to the one we’d started in. The journalists were all there, setting up for all the camera and video shots of me and the guy running against me to interview each other about our politics and positions.

Suddenly, I found myself in a short golden-brown shirt and mini-skirt. I was told this was more appropriate than my gothic look. The outfit made me look like a corporate drone in the (in)human resources department.

Even stranger, I was able to view this from outside myself. I was a spirit in the room or an audience member watching my own self.

The shots were set up and suddenly my outfit began to fall apart at the opening of the interview. I had sat up straight and my shirt rose above the waist line to reveal my stomach, while the criss-cross style top decided to part at the right breast, revealing the fact that I had no bra on underneath. I noticed that I had very different skin. A woman next to me on the couch where I sat reached over to shield my corporate self’s breast from the cameras as I looked at the self directly in front of me.

My other self got up after a moment and excused herself towards the bathroom, while the opposing party on the other side of the living room looked on in amusement. My other self, just short of the bathroom, turned towards the room behind her instead and started to let out a loud “aaagggghhhhh!!” as she shook, obviously having a mental meltdown. I ran to my other self and ushered her into the room away from the media to calm her, and that’s when I woke up, about to yell “aaagggghhhhh!!” because I couldn’t breathe and was having a panic attack.

George is still not here, but I’m tired as hell.

I have to use today to clean the house and look for a job and perfect cover letters. But I need the anxiety to please go away.

I don’t want to be the drugged housewife who is too mental to work.