Friday, May 05, 2006

Pain and Productivity


So I'm currently sitting at the computer, waiting for my massive doses of caffeine to kick in while listening to a local radio station online. Last night was a late night, especially considering that caregivers of children who consistently wake up at 6:30 am should not be staying up past midnight. Why did I do something so stupid? Well, Chris and I had John and his girlfriend over, and this was the first time we had met the lady in question. Impressions? I'm not blogging those without discussing them with John first. He's not much for broadcasting his personal life over the internet, unlike us. I'm always nervous around new people, so suffice it to say that dealing with a new person in my home was not the highlight of my day. Oddly enough, that was housecleaning.

Anyone who has been over to our house for any length of time inevitably notices how messy it is. This is due to a combination of factors, which includes stress and panic attacks (essentially paralyzing me), absolutely no training in housecleaning, and a hate of cleaning in general. I hate the fact that once clean, a house will stay that way for approximately three minutes, therefore requiring daily work on the SAME THING I was doing yesterday. But I digress.

I have been getting better at dealing with my panic attacks. Instead of not knowing what is going on, I realize almost immediately 1.) what triggered the attack, 2.) that my then-irrational mind will actively look for excuses to keep it going, and 3.) that as soon as I stop the irrational train of thought I'm having my panic attack will START to wind down. The average winding-down time is aprroximately half an hour if I lay down and actively stop the stupid train of thought I was on. The longer I stay in an irrational train of thought, the longer it takes me to wind down. So I've been committing myself to stopping stupid thoughts as soon as they start.

My stress level is also going down due to Chris starting his new job on the 15th. Sure, he still won't get a paycheck until 9 days after rent is due, but we'll deal somehow. Just seeing the light at the end of the tunnel there is enough for me.

As for not knowing what I'm doing house-wise and my active dislike of domestic chores, I've been forcing myself through that also. After all, I need to learn how to do things efficiently, and as soon as I do there will be less housework to actively dislike. Or at least I hope.

So the oddest thing happened yesterday. I woke up energized and clear-headed, which hasn't happened in years. So what did I do? I cleaned the damn house. Not all of it, mind you. But I most certainly got more done in one day in terms of cleaning the house than I have ever done in my entire life.

About halfway through this roll I was on, I stopped long enough to go, "wow, what happened?" And then I realized something.

I just emerged from a period without debilitating pain. For the first time in months, I woke up with no pain in my pelvis whatsoever.

I have suspected endometriosis and possibly irritable bowel syndrome. What this means is that my gynecologist thinks I have endometriosis but is so far unwilling to do the test necessary to confirm. This is because currently the only way to confirm endometriosis is laparascopy, which is an outpatient surgery which involves cutting small holes into my abdomen, sticking in instruments, taking a look, and possibly taking a piece of tissue for a biopsy. My gynecologist has been avoiding the surgery because 1.) she's pretty damn sure I have it, and 2.) as far as she is concerning if I absolutely have endo she wants to limit the number of surgeries done to correct it as surgery leads to scar tissue which leads to complications.

So what is endometriosis? Endometriosis is a gynecological condition where the lining of the uterus (which is made for a fertilized egg monthly, then shed if not used, resulting in a period) grows in other parts of the body, most commonly the pelvis. This tissue also attempts to shed monthly, but unfortunately has nowhere to go, leading to build-up which can scar and/or attach itself to organs and/or attach itself to other lesions (build-ups). This can result in quite bit of monthly pain and often leads to chronic pain (as organs are unable to move properly or function properly due to blockages and adhesions) and in 30% infertility. Yes, it is an icky icky chronic disease.

I first suspected endometriosis after Shai's rather painful birth. When my periods started again they were more painful than ever and required maximum doses of painkillers. Then sex became painful, and I knew something was really wrong. I knew my aunt had gynecological problems so I called her up and asked her if any of this sounded familiar. Turned out she had endometriosis, as did my grandmother. And from that day forward I knew I needed to get diagnosed and treated.

It wasn't until I left my first husband that I was successfully treated. See, he didn't want to pay for me to go to the doctor, and I couldn't work, so I lived with chronic pain for months until I finally just left (for a variety of reasons, but that was definitely a major part of my decision). When I returned to AZ I immediately saw a family doctor who prescibed me Vicodin (I'm not kidding, the pain was that bad) and sent me to a gyno in Tucson. I was loopy on the Vicodin, but at least I wasn't in pain anymore.

The first time I saw my gynecologist I listed my symptoms and the first words out her mouth were "we can treat this". She prescribed me a regimen of monthly shots for 6 months that would essentially put me in menopause. At $500 a shot it was a good thing the state was paying for it all, because I would have been unable to. She also said the diagnosis wasn't perfect, that she couldn't KNOW for sure that I had endo without opening me up. But after she had a patient who literally had enough scar tissue from surgeries that one of her kidneys died, she was unwilling to open up anyone so young (23 at the time) just to have a definitive diagnosis for someone who already had all of the symptoms and genetic background. She said if the Lupron Depot shots worked for me and reduced my pain, then that was enough to prove it in her mind.

Lupron Depot works by simulating menopause, thus ending periods and hormone production. Without the periods and blood supply, the "theoretical" lesions in my body began to shrink. Without the constant pressure the amount of pain goes down drastically, and organ functions improve.

The shots did indeed reduce my pain, for all 6 months I was on them. My life was a living hell at that point, as I was already having custody issues concerning my kids, but at least I wasn't in pain. The only problem with the shots is that, like the surgeries, there is a limited amount of times you can use them without severely damaging the body. And so, directly after ending my Lupron Depot shots, I was put on birth control to control my periods.

Fast forward about 4 months and Chris and I are together. My pain has been steadily growing again and is now back with a vengeance. On top of the pain I was having major moodswings, which signalled a hormone imbalance. I returned to my gyno in December in search of stronger birth control, and was given the new Seasonale 3-month birth control. The theory was that one period every three months would reduce the amount of time the lesions had to grow, thus slowing the progression of the disease. Endometriosis doesn't have a cure, but if the symptoms and pain can be delayed long enough, menopause will essentially stop the disease in its tracks. It's a fight against time, and birth control is one of the major tools.

I was told that I might have problems adjusting to the new birth control, and I did. For one thing the hormones were in a much higher concentration, and with increased estrogen the pain actually increases for the first couple of weeks. I also still had spotting, plus "proto-periods" which were hormonal periods without shedding of the lining.

Before I refilled my prescription for another three months, Chris and John and I were disagreeing as to whether or not I was better off emotionally on the previous birth control (John and I saying yes, Chris saying no). So Chris essentially said it wouldn't hurt if I refilled it once more, and if it still didn't help I could always ask for a different birth control next time I saw my gyno.

So yesterday I woke up without pain, in a good mood, clear-headed, and ready to face the day. This hasn't happened years. I actually emerged from a proto-period with very little cramping and very little pain, and woke up without pelvic pain of any kind. Usually I spend the entire month in one level of pain and another, and yesterday there was nothing.

As far as I'm concerned my gyno is an angel on earth, and my husband is one as well.

Will this last forever? No, the disease inevitably marches on, and it will be necessary at some point to finally have surgery to have all of those lesions removed by hand and have the disease confirmed.

But until then, I will treasure every painless day I have, because they are indeed numbered.


Just call me Mel, everyone else does.