More and more, I just can’t keep up appearances

Today I am super tired, have mega pms cravings, and low dull uterine and ovarian cramping. Doom is due by Sunday at the latest.

Yesterday I allowed myself to feel slighted by some stranger on IRC. I felt like she gave me a bunch of shit about my pain issues, and basically wrote me off because I have not yet seen a reproductive endocrinologist, nor will I try further hormonal treatment for my pain issues.

The whole conversation on IRC started with medical marijuana questions – I wanted to know if Prop 215 had worked out well for anyone locally. I did get some good advice, but this one person stuck in my craw.
She asked what my pain issues are. I told her I suffer from stage III endometriosis. What happened next is what often happens – people ask me the same tired old questions – “have you tried this for the pain?” YES. “have you tried that remedy?” YES. “have you had surgery?” YES.

Honestly, people, do you really think I would live with this illness for 23 years and NOT try all the basic shit in the books, first, then surgery, then go from there?

Then she asked if I’d seen a reproductive endocrinologist. I told her no, I’ve not been to one, yet. This is where she got all huffy with me and basically wrote me off as some ignorant wretch.
I looked back through my records – I’d tried in January and again in April 2009 (last year) to see an endocrinologist. I forget why the appointments fell through.
The person on IRC seemed like she was telling me that I obviously didn’t try hard enough and therefore I must be happy to be in pain all the time.
I told this person that I’ve seen other specialists in the past 12 months, but she stopped talking to me.

I wanted to yell at her and say IF I HAD THE INSTRUCTION MANUAL TO MY BODY, I’D HAVE READ AND IMPLEMENTED IT.

Why did I feel so slighted by someone I don’t even know?

The answer is that I’m in defensive mode with the world at large over my illness – all the time.

People range from well-meaning to outright abusive towards me with regards to my illness. The people in question range from absolute strangers online and on the street to co-workers, friends and family. All. the. time.

I can tell the same people what I’ve tried and what I’ve not tried, what I’ve been through with what treatment – several times – and still get the same questions asked again and again. This is precisely why I started blogging about my pain, the what I’ve tried, the doctors, the vitamins, the diet in general. I’m always repeating my story to people, and therefore I’m always defending my rationale for trying or not trying this or that treatment. Everybody’s got an opinion. Everybody thinks they know best. Hell, it seems like everybody thinks I must be a total fracking idiot, living with endometriosis and not doing a damned thing about it.

Even presenting all this information on my website goes unnoticed it seems. People still ask me the same tired old questions. I copy and paste a url to them. They don’t care. People just want me to shut the hell up and be healed already. They want me to quit my whining. They want me to stop bringing them down.

This same type of write-off I get from people extends to my doctors and specialists. They all get tired of me after awhile and cast me off. That’s why I’ve seen 15 doctors in 9 years and am now on my 16th and counting. My current gynecologist lost her patience with me about a year ago because I wouldn’t get another cauterisation type laparoscopy by a different surgeon – I want an excision laparoscopy and I need to be sure of the doctor before I go and get the surgery. Also, I work very hard for miniscule money – I make $11/hr the expensive Bay Area of California, and I have a very expensive diet, no thanks to all of my damned food allergies. Also, I cannot take time off work just like that. I need 11 or more days off work to recover from surgery. It took 11 days and I was still in a heap of pain upon my return last time, and that was a desk job. I have a preschool job now. Also, there’s the co-pay. It cost me $1,500 out of pocket last time, but I was making $19/hour. I have different insurance now and it’s a different surgery that would be performed compared to last time. The co-pay could be much more. It doesn’t matter though – my gynecologist thinks I can easy peasy just take the time off work and get that “minor” surgery taken care of anytime! Oh and you know, I was not told about in advance, and did not ask for those hideous stretch marks I got from being inflated with carbon dioxide for the laparoscopy.

She actually used phrasing suggesting I liked being in pain because I would not schedule a second surgery.

She actually gave me an ultimatum of January 2010 to find pain management and other specialists, because she will not be refilling my Tylenol 3 prescription anymore.

Goodbye, Dr. Lisa Bernard-Pearl. You worked so well for me in the beginning, but in the end you turned out to be just as mean as the rest of them, casting me aside, giving up on me. You gave up on me. You threw me away.

On January 6, 2010, I had an apointment to see a pain management doctor. I was on my way there when traffic got snarled. I phoned to say I would be a few minutes late, and the receptionist told me to just turn around and go home, because the doctor would not see late patients. I told her I left work on time, but there was unforseen construction holding up traffic. She asked me if I had the new patient paperwork. I asked her WHAT PAPERWORK.
Apparently paperwork is usually snail mailed to new patients, but a particular receptionist at that office emailed it to me. I told the person on the phone I never got it.
I came back home in tears and looked through my email. I found the email – it had been sent in an unprofessional manner – it looked like spam because it had no subject line, was from a stranger’s first name only, and contained an attachment. OF COURSE I never opened it. I called the office back to complain about the woman, and they did apologise. However, there was no seeing that doctor again – it was her last day in that office – she’s moving to an office 50 miles north of me. They told me another doctor in that office would call me but that never happened. In the meantime, I’ve been too angry to call that office back, and too apathetic to find another pain management specialist this month.

However, on January 21 I saw gynecologist Dr. Streitfeld, on January 23 I saw Dr. Ellis, and on January 29 I will see Dr. Fredian. Today I put in a request to see Dr. David Adamson (referred by Dr. Streitfeld), who is a reproductive endocrinologist, and I also put in a request to see Dr. Grace Eng – the same endocrinologist I tried to see last year around this time.

All of this costs money. Most of this takes time off work. Both are difficult for me, because I miss enough work as it is by being bedridden, no workplace I’ve ever been with wants me to also miss more work on top of that for doctor visits, let alone recurring surgeries.

You know, the record on repeat is enough to make me spit. Really. I was sick of it three years ago. I was tired of it five years ago.
Just go back through my entire journal. I’ve got diary entries dating to the 1980s. Have a good read. And don’t offer me any more insight, suggestions or advice about endometriosis and treatment options unless I ask for it.

Postscript ~
I felt damned near homicidal tonight. I spent all night writing this blog entry. I stepped away to do laundry and grocery shopping, and ported over some more really old diary entries. I took half a Tylenol 3 to medicate against the rage. Rage is the best way to describe how I felt all day today and still feel to a degree even now while drugged.

3 Responses to “More and more, I just can’t keep up appearances”

  1. J

    I’m so sorry you are having to deal with stupid people and stupid doctors on top of all the endo and food allergy stuff. :( ((hugs))
    I really hope that one of these other doctors can actually help you!! And although I’m not working now I do know the frustration of needing so much time off of work for being bedridden, and having to take time off for doctors on top of all the time you already have to take due to the pain. :( Also, I feel you on the money thing. :( Because it’s not a rough enough situation already, you then have to pay that much money to be told “Oh, well try this. Oh you already did? I can’t help you then.” Or that sort of thing. Grrr…. because we all grow money on trees and can afford the constant useless doctors.

    On a side note – I hope all of the spelling is right lol!

  2. K

    wow! reading your story is like reading what i would write! its crazy to think that there are people out there who are going through the same things as me..i always feel so alone going through this like no one understands! with the money situation to the pain to the 100 different docters just telling you “its nothing..take a pill” its so fustrating and exhausting! the most frustrating part is that there is nothing we can do to prevent this or change it! thank you for your story!

  3. steph

    Thank you for reading and adding your voice to my blog to also be heard – there are too many of us suffering, and we are not treated humanely by doctors. If you have a blog about endometriosis, I am happy to add you!