Small victories where they can be had

I just went for a slow 1.5 mile walk with my husband! I haven’t been out of bed due to the pain in 2.5 days, so this is a HUGE accomplishment! We were talking about what to do after dinner, and my legs were restless and twitchy. I began doing slow stretches and my husband said he’d be up for a walk if I was.
It took awhile to get some street clothes on, since I’ve been in pajamas for the past two and a half days. I was winded just putting clothes on, so I felt a bit nervous about venturing out. I took my water bottle with me, and my medication.

We walked down to the beach and stood looking out at the water and the San Francisco skyline. We watched planes coming in for a landing at Oakland airport. After standing for a bit, we walked along the recreational trail just off the beach, and then cut through the shopping center to come back home again. I’m seriously exhausted, some of the pain returned on the walk and I had to take a Tylenol 3 (plus, it was time for my next dose), and my legs wanted to stop moving one in front of the other for the last half mile, but I did it!

Now I go to bed. :)

Motivational dream

This morning before waking, I had a dream that I was back in time, working at the daycare in Michigan. I had been off work bedridden with endometriosis when a friend stopped by to chat.

I realised that this friend had also been grade school buddies with another friend of mine, whom I happened to work with, and who was filling in for me at work that day, so I convinced my visiting friend to drive me to the daycare so she could see where I worked.

We got there and found the teacher assisting some children. I walked slowly and with difficulty up to the teacher to introduce her to my other friend. As soon as she turned and saw my friend, they both lit up and hugged and it was a reunion of grade school buddies again. The teacher filling in for me was my friend Rain. I don’t know who the other woman was.

While the two old friends chatted, I went to the back of the class and sat down uncomfortably due to the endometriosis pain, holding onto my pelvis the entire time. I was on medication and a bit fuzzy. Children and co-workers alike began asking what I was doing there. The director and/or assistant director saw me and made offhand commentary about how I didn’t look sick, and wondered aloud why I came in at all, after I had earlier called in sick. They were not discreet at all in their accusatory tones that I was faking my illness.

This of course pissed me off, and I found myself trying to explain to co-workers what endometriosis is and how it affects each woman differently. I tried to defend myself by my glassy eyes and told them I was on too many pain meds to be able to work, but I really wanted to reunite two friends that day.

Talk about bad timing – I could have waited to do this and not jeopardized my employment.

I think at one point the children were at recess and I finally had to tell my friend to take me back home, because I could no longer handle all the accusing glares I was getting. I shuffled out of the workplace, still holding my pelvic region, the pain having subsided, but still on pain medication. I felt completely like a liar and a fake, despite how very real my situation is, because I had no VISIBLE way to defend myself other than this shambling and holding that I was doing.

I got back home and sat down on my couch, clearing some of the clutter from my coffee table, and said aloud what I had been thinking the whole time I was at work that day – “I need to create some sort of picture book to show people exactly what a woman with endometriosis goes through.”

And then I woke up, and I was in pain – low back pain and minor pelvic pain – a combination from sitting on the couch for long hours doing homework yesterday, and having been intimate that night.

I don’t have enough shit on my plate right now, so why not add a picture book to the queue?

Here is my call out to anyone with endometriosis reading this blog entry – CREATE YOUR OWN PICTURE BOOK and add it to my eventual voice. The more books and the more personal stories out there – published and in book stores – tangible rather than web logs – the better.


A post of a different sort

I normally type in this blog when I’m bedridden from the endometriosis, when I’m reporting about a doctor, or when I’m chronicling my body’s reaction to foods and/or meds.

However, this evening I would like to talk about what my life is like when I’m not in debilitating pain!

A week ago last Wednesday was the last of the endometriosis pain for a few weeks. Since that time, I’ve been bicycling to work, which is a two-mile round trip. I pedaled on Friday, September 11, Tuesday, September 15, and today.

Several years ago, I used to bicycle 17-35 miles all in one go, once a week. I stopped doing that after I had laparoscopic surgery to diagnose me with endometriosis in 2007. That same year, I lost my bicycling buddy (she got married and moved away). Since that time, I’ve not had the motivation to continue biking, and I feel bad about that. It did take a few months after surgery before I even began to feel healthy again, but still. I should have gotten right back on the bike.

Anyway, I biked to work on the 11th despite heavy fatigue from the last of my painful cycle. On the 14th I did not bike to work, because I had a dermatology appointment to drive to immediately after work. I would have pedaled were it not for that appointment. That afternoon however I did have some pelvic pain, so that would have sucked while biking anyway.

Now that I work very close to where I live, I can bike to work. So when my body allows it, I pedal two miles a day round trip, and it’s hard work until I build up all my muscle and stamina again. There aren’t even any hills right where I live – it’s flat! Alas, it takes time to build myself back up. Which brings me to the next statement –

Today I bicycled FOUR miles!

I forgot a portion of my lunch at home today, so on lunch break I pedaled back home to get the rest of my lunch, then pedaled back to work. It took 20 minutes to go 2 miles with a quick pit stop.
Now get this – back when I was an avid cyclist, I could go 7 miles in 20 minutes, INCLUDING hills.

This of course is a personal challenge – to get back to where I used to be as a cyclist.

Next week is already going to be one week pre-menstrual again. I’m not looking forward to it. So far this month, I will have about 10-13 days all told of feeling healthy and vibrant before the symptoms return and I get all worn down, heavy fatigue, PMS, cramping and then the bedridden again. I’ve already used up two of those 13 days. I sigh heavily but then resolve to live the next 11 days as well as I can, and enjoy life the best that I can, until the darkness falls once more.

People who don’t have chronic issues can’t understand the darkness – the severe depression that comes with not being able to leave the house for two or more days at a time. This statement does not apply to just chronic PAIN, but to all types of chronic illness. If you have a chronic issue that prevents you from living your life for two or more days each month, you know you are a soldier and that I march right along with you.

Live when you can, and breathe patience when you cannot, but don’t ever give up.

Awesome NPR Perspective

I can’t get this out of my head and it’s a good thing! It’s positive and reinforcing.

Yesterday on the way home from work, I was listening to National Public Radio (NPR) and my favourite series came on – Perspective. It features someone telling a real life story to give others perspective in their own lives. I collect the podcasts to this series as well.

I almost cried on the way home from work as I listened to yesterday’s perspective. I wrote about it on my main website when I got home, but I want to share it here, too.

The Notepad
Wed, Feb 18, 2009 — 7:37 AM
Evan Sagerman’s wife was seriously ill, but doctors couldn’t — or wouldn’t — help her.

In the small examination room, my wife sat on the table, furiously taking notes.

The doctor looked at my wife’s notebook. The doctor said that when she sees a notebook like that, she knows she’s dealing with a neurotic patient – the kind of patient who reads too much on the Internet.

The doctor then talked to my wife about her illness, pausing now and again to allow my wife’s note-taking to catch up.
I appreciated the doctor’s polite pauses but, this was the wrong doctor. This doctor saw my wife in her notebook, but she had no idea what she was looking at.

My wife’s health began to fail when she was in her early twenties. Over a period of five years, she went from doctor to doctor, and from diagnosis to diagnosis. She was told that she had allergies, that she had autoimmune disease, that she was normal, that she should be on steroids, that it was all in her head.

Meanwhile, she steadily grew worse.

Having an undiagnosed chronic illness is like being perched on top of Mt. Everest – you’re still on the planet, but you’re not well-moored. The air doesn’t have enough oxygen in it – you know you have to get back down to a lower elevation if you want to stay alive. Only you don’t know how.

Her notebook is where my wife recorded everything; seemingly unrelated symptoms, meetings with doctors, therapies and medications tried.

What ice axes and crampons, down jackets and ropes are to climbers, that notebook was to my wife. It was the tool for her descent back to safety, if she was going to descend at all.

Refusing to give up, my wife met with yet another doctor. She consulted her notebook as she gave her long medical history.

This doctor listened carefully to her lists of strange symptoms, test results and therapies tried.

When she was done, he said he knew what was wrong with her. He said he could help. And he did.

It’s taken years for my wife to slowly climb down from her airless peak, but she has.

A climb she accomplished, clutching her notebook.

With a perspective, I’m Evan Sagerman.