Most Recent Doctor's Appointment
Before the appointment, my husband kept reminding me that the pain wasn't going to be solved in the doctor's office. We were just going to discuss the next course of action. But I expected something different than what occurred.
Dr. Nath asked me what I had been feeling. I told her that I was back to daily pain, distracting fatigue, and pain with intercourse. She listened, paused, and said "I think you need physical therapy."
I blinked. What? Did I say anything about back pain, muscle pulls, or pinched nerves? I said that my girl parts are causing me pain. And you want me to go do some stretching?
Then she said the sentence that made me cry, and that she restated much better later in the visit: "I don't think that the pain you're having is from endometriosis."
I think all of the air was sucked from the room. I was crying, my husband looked shocked, and I felt we had been whisked back to January of this year, when no one knew my diagnosis. Then we let her continue to talk.
She said that the pain cycle certainly started with the endometriosis. But then my neural pathways became programmed for pain, and when the endometrial tissue was removed, the messages to my brain were still sending pain messages. So the physical therapy would help reset my neural pathways. She knows of a clinic that specializes in chronic pelvic pain.
If the PT didn't work, then she suggested we try accupuncture. If that didn't work, then maybe some Chinese medicine. But she is convinced that my hormones are suppressed by the Lupron, and that the endometriosis tissue has not grown back. She thinks we need to widen our view from the narrow window of western medicine.
Ok. I am totally willing to try PT. I will try anything that will help the pain. But what I hear when she says that my neural pathways are confused is this: "It's all in your head." I know that is not what she said. I know that's not remotely what she said. It's just what I hear.
Also, I did have three months free from pain. What was going on with my pathways then? And I have a psychiatrist friend who says that six months of pain doesn't re-program your neural pathways.
She did order bloodwork, to find out if my hormones truly are suppressed right now by the Lupron. We should know Monday if my hormones look like a menopausal woman or not.
Anyone out there have experience with this? Do you buy it? Am I just looking for an "easy" fix and so am disappointed in her answers? Or do her answers leave you puzzled as well? I welcome any feedback you have.
Labels: chronic pain, endometriosis
Welcome Back, Old Friend!
Ok, so here's the latest and greatest, everyone.
Menopause seems to be M.I.A., but Endometriosis is in full swing. Hot flashes are long gone; daily pain has checked in. I'm starting to think that the second Lupron shot was a dud, as I've seen no significant change since I got it two and a half weeks ago. I'm going to see Dr. Nath on Friday to figure out what we do next, since spending the day with a heating pad and Vicodin is not what I like to do.
But guess what! There is one little friend who is back and I did actually miss, and that is Lack of Appetite! I know that I shouldn't be excited about this. I know that healthy eating is better than no eating. But I'm walking three miles a day right now with no weight loss. (Damn you, Lupron.) But when I was sick and had no appetite (and did no exercising) I lost 20 pounds. So maybe there will be some change now. Let me enjoy the little benefits to being sick, ok?
Labels: chronic pain, endometriosis, no appetite
Working With Pain
I started a new job two months ago. I love it. They seem to be happy with me, too. I've done well on the assignments I've been given so far, and I feel I've already contributed to the team.
And now my bitchy friend
Endo is threatening to rear her ugly head. Here's the thing: no one will ever be able to convince me that my
Endo didn't play a part in me losing my last job. It's ridiculous, I know. The company laid off 5% of its staff the day I got laid off. They eliminated my position, meaning they can't hire someone to replace me. They merely decided the position was no longer needed.
But what part did my illness play in that? I was on medical leave for three months. During that time, didn't I show them that they could get by without my help? Didn't I prove that my position wasn't needed?
I guess I don't fully believe it, because I didn't take any legal recourse. I signed separation papers to the effect that I didn't hold them liable for any bias in my termination. But how could they not be biased?
I started having pain in November, and I was out for one week. We thought it was stomach flu, and I stayed home. Then a few weeks later, it was clear that it was not flu, and the ER doc gave me a prescription for
Vicodin to help me manage the pain. I needed the
Vicodin for 4 and a half more months. In January, I tried to work through the pain. I worked from home a lot, or had to leave in the late afternoon so I could go home and take a
Vicodin. In early February, I followed the advice of my doctor (who believed at the time that my body was just stressed--
see here) and was going to take a week of sick leave. Work told me I needed to go on short-term disability. I know a lot more now than I did then, so I don't know if I would have given in as easily as I did. But I also know that for the next few months, my job was to get better. And I was lucky to have a paycheck while I got better. But work had to go on without me, and figure out a way to do that. When they successfully managed that, it wasn't too hard to figure out whose job to cut at the time of lay-offs.
And on my end, even though I was getting paid, money was still extremely stressful. I wasn't getting my full paycheck, because I couldn't get approved for official short-term disability. I didn't yet have an actual diagnosis, so I was on voluntary medical leave, which provided only 60% or so of my salary. I ended up getting back pay when my diagnosis finally came through, but the interim was very stressful.
Anyway, my lap happened, I was diagnosed, and the pain went away. Yippee! I called work with a Return to Work date, and was very excited to get back to it. I was worried my mind was turning to mush, that I was only identifiable through physical problems, and that my business skills were lacking. I couldn't wait to get back to working.
And a week later, they laid me off. Ouch. My scars were still wounds! I wasn't even due back to work until the next week. Legally, they could lay me off while I was on leave, because the CA Notification period extended past my Return to Work date. Personally, it sucked.
So fast forward, and I found a job (paying more!) two weeks later. I had two more weeks off, and started at the job June 8. I had no pain, vastly improved energy, and a new, positive outlook on life. I was so grateful for everything. I AM so grateful for everything.
But just two months later, I'm having pain and fatigue again. The fatigue is what is so depressing, oddly enough. I hate the pain, and all that it keeps me from doing. But the fatigue seems unfair. I'm in pain-- do I really need to be exhausted, too?
And here's the thing about this new, better-paying job: I love it. I absolutely love it. It's a great fit, culturally, personally, and professionally. I am working on really fun projects, have a great boss, and am making friends in the office.
So if
Endo gets in the way of all of that.... I don't know. I don't want anyone at work to know the pain and suffering I have going on. I don't want to be known as the sick girl. Or worse, as the girl who takes sick days. I want to be well, and do well, and impress my boss and colleagues. I don't want to work through this again. And I definitely don't want to lose any more opportunities because of this.
Labels: endometriosis, fatigue, work
Lupron Side Effects
There are women on-line who will tell you that Lupron is the worst thing to have ever happened to them. I think they hate Lupron more than they hate their Endometriosis. I'm not one of them.
I had very few side effects with my first shot. In fact, I'm not sure I had any side effects. I had the effects of menopause, but that is intended. I had trouble losing weight, which was surprising since I started walking 15 miles a week. But since some women say they gain 40 pounds on Lupron, I guess I'll be ok with maintaining my weight.
But lately, I've noticed the dizziness that some women have reported. Oh my the dizziness. I am sitting at my desk right now, feet firmly planted on the ground, and I feel like I am standing on the ledge of a 75-story building. And can someone PLEASE stop shaking this very tall building? There's a woman standing on the ledge, after all!
Sometimes the dizziness is while I'm walking down the street, and I wonder why no one else feels the damn street shaking. This side effect can go away any day now, thanks.
Labels: dizziness, lupron side effects, scaling tall buildings
New Site- Will Still Post Here Too
Hello to the three of you who read this.
There's a new site I love:
www.mymedworld.com. I have a journal there, under "
Sandra." I will be posting there regularly.
To let you know what's going on though, I have had my second
Lupron injection, which can't start working soon enough. I've had pain almost every day now for more than a week. I don't have it all day, and ibuprofen takes care of it. (Have only taken one
Vicodin.) But it's there, and it scares me a little. I don't ever want to be back where I was six months ago.
So come on,
Lupron. Do your stuff.
Can't Wait For Tomorrow
I have never in my life looked forward to a shot before. But tomorrow's
Lupron injection can't come soon enough.
This week, the old recurring pain has been around a lot. Last night, it felt like it used to feel: lying in bed, trying to fall asleep, unable to sleep on my stomach. The hopelessness threatened to come back too, but I clung to the hope of the upcoming shot.
I spoke to Dr. N yesterday about the pain, cramps, etc. coming back. She thinks that, based on what I've explained, the last
Lupron shot likely started to wear off a few weeks ago. So she's also glad that I'm getting another one tomorrow. But since six months is the maximum time you can take
Lupron, she's concerned about what we'll do when I'm done with this next round. She thinks we'll put me back on the Pill, and maybe start it in two months. The
Lupron is supposed to last three months, but it obviously isn't for me.
If the Pill therapy doesn't work, then we might have to get more radical. We'll burn that bridge when we get there.
Cross your fingers that this injection wipes me clean of any
endometrial cells. Come on, big needle!
Labels: chronic pain, endometriosis, Lupron
Two Days Until Next Lupron Shot
I'm gearing up for the next injection. I think I am really looking forward to it, actually. Lately, the pain has been a little more common than I'd like, as have been the cramps. I was starting to think that my menopause was done until the next shot, but I've had a couple of hot flashes this week, as well. Yesterday, my whole face was flushed for about an hour. I was cold in the rest of my body, but my face felt white hot.
And then last night the mood swings came back. I was having an excellent evening. Tired, but otherwise I was fine. Then an emotional topic came up and I was overwhelmed by depression. I cried for the first time in months, and the crying felt really good. Like I just wanted to give into it and keep crying.
I have a call in to my doctor, to discuss with her if this is all normal, and if the
Lupron shot will help get me back on track. Primarily, I want to know if I should still be having pain. I'll let you know what she says.
Labels: depression, menopause. Lupron, that old familiar pain
