I Will Not Suffer In Silence

So here we are, two days before my next period – a.k.a. my next bedridden vacuum of lost time, lost fun, lost sunny warm days. It’s supposed to be in the 70s for the next several days!

But let’s go back a few days to get caught up again. I last wrote on Sunday. I was able to be intimate with my husband that morning! Amazing, after the really bad pain I was in the day before. I hung out with my husband Sunday afternoon, since he skipped band practice. It was lovely, warm and sunny outside.

Monday night, my husband and I went out dancing! We’d been looking forward to this, as it was the 17-year anniversary of our favourite goth club. It was packed and the music was good. I danced until every bone in my body ached, which didn’t take very long, and then I danced some more. What a workout!
It was about an hour into our night out when the right side ovarian stabby pain returned. I thought the night would be over, but I pushed through it. The pain was intermittent, though. Just a bit of tightening and stabbing for a few minutes every now and then. We got home sometime after 3am. I showered and went to bed, and I was up for work by 7am, because I’m insane. I only do this once a year, trust me.

Yesterday at work was painful in the sense of sleep deprivation, but I had no pelvic pain at all. Of course, I’m in all kinds of joint pain, especially my knees. I am officially diagnosed with osteoarthritis and chondromalacia patella (as a child, I was not allowed to perform certain gym activities, including any where I had to sit on my knees or bend the knees back for too long a time). The joint pain and knee pain is nothing compared to an ovarian cyst, and an ovarian cyst is similar but still not as bad as endometriosis.

There have been discussions on LiveJournal (see the comments to this post). I want to keep the discussion going, because we endo patients really do have a skewed sense of pain compared to the ‘normal’ population.

When I got home from work just before 4pm, I went to bed and didn’t get up until 9pm. I watched the latest episode of LOST with my husband at our neighbor’s house (cuz we don’t have cable, satellite or regular TV hookup by choice), and came back home and crawled right back into bed. I read for a bit before falling asleep again.

Woke up this morning in a lot of joint pain, with the added pelvic pain again. I had taken a Tylenol 3 before bed, and this morning I’m already on 600mg ibuprofen and rocking back and forth to get limber for the day. I’m doing large hip circles to loosen up the pelvic region. The pelvic pain is not ovarian – it is uterine – because I’m due to menstruate in the next 48 hours.

We’ll see how it all turns out…

I was just entering phone numbers into my hand-me-down iPhone, and I got to my Qigong practitioner. I did a web search on her to make sure I had an updated phone number, and wondered if she had a new website out yet.

Boy was I disappointed when I found a meetup group she’s formed. It’s called Law Of Attraction. On her meetup group’s homepage, my Qigong practitioner lists herself as a member of “The Oakland Law of Attraction / The Secret / Abraham Hicks Group”.
Yep, it’s the same “Law Of Attraction” I’ve ranted about before. This bullshit comes from the book and film called The Secret, which came out four years ago (in 2006).

I was SO pissed off when I first saw that film. I think it was in 2008 – that’s when I began ranting about it in my journal – because in the film, there’s this “metaPHYSICIAN” who goes on about how all of people’s complaints – including medical complaints – are created by the individual against oneself (minute 15:22 and minute 23:52 in the video).

After viewing that film, an experience I had a year earlier, back in 2007 or early 2008, made a lot more sense to me.
While I was attending The Business of Metaphysics classes at the local coffee house, I met a Qigong practitioner who described what she does for a living. I was so excited based upon her job description – I wanted to see if she could help me with pain management.

However, upon talking with her after class, she was openly hostile towards anything I told her about my endometriosis pain.

She kept correcting me whenever I said ‘my illness’, for example. She dismissed me right away and told me she could not help me because I refused to see that basically I was to blame – I had manifested the idea that I am sick (a.k.a. she belongs to the “Law of Attraction” cult), and she said that in reality I am not sick at all. I proceded to start calling this woman but she never called me back. I became really angry at this person and at any person who would tell me that even before I was born, when the genes were being passed to me via my mother, that I was somehow responsible for the endometriosis that would rear its ugly head once I began to menstruate at the age of 14.

But I continued reading up on Qigong and really liked what it was about, so I became determined to find another practitioner, telling myself that the first woman I met is seriously flawed as a human.

I found another woman – the woman I saw for the next year or so. I was really happy with her services, and wished that she wouldn’t be so flaky – she offered Qigong workshops but it never lasted long. I attended what I could, but then she’d be out of reach again – after awhile, I stopped asking her when she thought her next workshop would be. I did go to her house to get Chi Nei Tsang treatments, however. It was during one treatment – it might have been my last treatment – where she gently suggested that I had created the endometriosis because of a traumatic experience I had with a boyfriend when I was 18 years old. I had told her no, that I’d been vomiting from severe pain from endometriosis for 3-4 years previous to that. She kept trying to impress upon me though, during the Chi Nei Tsang treatment, that I likely was the cause of my own illness, and that all of my negative experiences in life, all my sadness and woes since birth had eaten at my ovaries and uterus, as that is where emotions gather in a woman and create illness, she said.

Since I had enjoyed her services for several months, I basically brushed off what she was telling me. I was in denial. After all, she wasn’t being rude or hostile at me like that other Qigong woman. But after the session and from then on, it did stick in my craw a bit that she’d say those things to me.
As it turns out, I really couldn’t afford her services after that, anyway, but I guess it’s for the best, since she’s one of THOSE people.

And now she’s fired.

I’d like to remind the world that one is born with endometriosis, one does not acquire it – especially by negative thoughts. Oh but that research came out in January, 2009 – three years after The Secret appeared. I guess the charlatans and the medical community at large haven’t caught up with the times.
Ah but doctors are still telling patients to have a baby; that getting pregnant will cure endometriosis, too.

Yesterday was the worst pain day, yet. I took a total of 2 Tylenol 3 plus 1,400mg Ibuprofen to get through the day yesterday. The pain was stabby and sharp at times, continuous and gnawing all of the time. I would estimate the pain was at a 7 on the pain scale all day yesterday. I had moments where it spiked to 8 on the scale. I had low grade nausea for much of the day.

Still, not wanting to have my warm sunny weekend taken away from me, I ventured out of the house to go to the post office and to the bank. Within the first 200 feet, I was grunting from the pain. Every single step was painful, but I pushed on to my car and drove to the errands I had to do. On a day like this, I should be riding the half mile to the post office and the bank, but I was in such pain that I had to drive it. When I came home, I was near tears from the pain, and that’s when I began the serious medicating for the day.

My husband drove us wherever we needed to go for the rest of the day. I did NOT want to stay indoors and lose another sunny day – I lose too many per year from chronic pelvic pain.

We went to a local dispensary to see what free services I could get under my Prop 215 card, since the cannabis is not working to lessen the pain. They have Reiki, acupuncture, hypnotherapy, and other stuff, but most of the classes are booked up, so I had to get on the waiting lists.

I think it was while we were on our way to the dispensary I suddenly realised that all this pain is likely due to an ovarian cyst, because the pain has been so focused on the right lower quadrant of my pelvic region, and has been stabby, and I had been nauseated all day.

Then we went on to our favourite coffee stop (Peerless – as opposed to Julie’s our favourite coffee and tea house – where we would actually be able to sit and stay awhile), then we went to the AT&T store to finally activate the iPhone my husband gave me so long ago. From there we went to Ikea to look for a bed frame but that was a bust. While we were at Ikea, I saw so many people in wheelchairs, and I REALLY wanted mine at that moment. Other pedestrians in the store were impatient by how slow I was walking, and would brush past me quickly. This made me want to cry, or worse, shout at them that I’m in a lot of pain and to leave me the hell alone.

I have a wheelchair but I refused to bring it with me yesterday because I’m still too proud to use it unless I’m in crying pain. Of course, when I’m in crying pain, I don’t actually leave the house, heh…so I have GOT to learn to not be embarrassed to use the wheelchair when I need it. And yesterday I really needed it.

After Ikea, we went to Endgame, then came back home, ate some dinner, and then went to a friend’s house for impromptu game night. I sat in the most comfy chair I could (a computer chair), but still was in a lot of pain, and had to get up and move around a lot.

With an ovarian cyst, the large hip circles don’t really work – in fact, I think they cause more pain.

When I got home, I had shooting pains on the left side, but higher up – like above the ovary or further. I used the bathroom and when I wiped, I found a dime-sized amount of bright yellow mucus.
This morning when I woke, I had clear, thick, abundant vaginal discharge, and I am no longer in any pelvic pain.

For me, I think this means I really did have an ovarian cyst, and it ruptured late last night.

Here’s hoping the pain is done and I get a few pain-free days before Friday, when my period is due!

Woke up this morning with moderate low back pain that makes me wince and grunt when trying to move around, and full body joint pain. These are more symptoms that the endo is flaring again and about to take me down.

I’m still super tired emotionally and physically. I still feel weak and now have pelvic pain to go with the joint and back pain. The pelvic pain is about a 3 to a 4 on the pain scale. It is low, dull, achey. The joint pain is about a 5 to 5.5 on the scale. It is nagging and at times piercing.

I took a pregnancy pee test just because, and of course it came out negative.

I have a full week before my period arrives, but with how my body is feeling at this moment, it feels like my period is upon me in the next 36 hours.

I started menses at the age of 14 with a mindset of “this is just how it is for everyone”. Later, when I found out that it’s NOT this way for everyone, I became angry every month – “it’s not fair”. Then, later on in life, by the time I hit my 30s, I began to go back towards the “this is just how it is” mindset, but knowing that it’s just how it is with me.
Now, since January 2010, my brain has gone in a different direction. It’s actually turned into fear and near panic, in a child-like state, whereby this inner child has been crying out “Mama, I don’t wanna go to that bad place again!!! Why can’t anybody help me mama?”
My body and mind have gotten tired of fighting this fight for the past 24-25 years, and it’s crying out – it’s throwing a tantrum – like a bullied child does before school in the morning – “I don’t wanna go! You can’t make me go! Don’t take me there!”

The fact that I’ve been in a tearful emotional state since last night, continuing through this morning, is of course another premenstrual symptom. And once again I’d like to yell in anger to the endometriosis, “I STILL HAVE ONE MORE WEEK LEFT! LEAVE ME ALONE!!!”

Today I feel severely tired. I had a rough day at work wherein the students were all spazzed out over ‘wacky hair day’ and the knowledge that they do not have school tomorrow (staff-only day scheduled). I talked til I was out of breath trying to regain control of the classroom on several occasions. I was in charge of the first/second grade classroom today, because the head teacher overslept and didn’t come in til almost 11am.

Still, before leaving work, I thought I’d still make it to the gym. I joined a gym in late January, then spent all of February sick as a dog, so March is the first time I’ve been able to make use of my gym membership. I have been three times, and was supposed to go again today. However, I got home from work and all I wanted to do was cry and go to bed.

I didn’t end up crying, but I did crash on the couch for about 40 minutes, and since waking, I’ve not recovered any energy.

My husband made me dinner, thankfully, but still it did not do anything for my fatigue. Now I must note that I’m really surprised by this – this level of fatigue, where I literally want to just fall down from standing position and start snoring – that is special only to menstrual fatigue. It happens to me a couple days before my period, and happens for up to a few days after my period. I have had no notable pelvic pain in the last couple of days, but I did have pain back on March 6, five days after I’d stopped spotting, and on March 8, on the day I would typically ovulate. What was weird about the pain on those days was that it was not ovarian, so I probably was not ovulating. It was really low on the uterus, and near or on the bladder. I seriously felt like I had a urinary tract infection on March 8, and I had to take 600mg of Ibuprofen gel caps at work to stave the pain.

This bone dragging fatigue – my eyes are drooping even as I type and my whole body feels so very weak – this alarms me and makes me think my period may be sooner than next Friday, March 19.
If my period is early, then I won’t have had 19 days between downtime cycles – I will have had less than three weeks between the bedridden times.

I mean, as it is, I ended my period, then got pain again five days later, then again a couple days after that. So I haven’t had consecutive pain-free days between cycles. And when you look at the calendar, you see that I stopped my period, I got some pain the week after, and then a week after that, I am already due for my period again. That’s not fair, is it?

Here’s hoping it was JUST the kids having wiped me out today.

My website provider has informed me that they are moving my account to a new server soon, so if this website is unreachable, it’s only temporary – it will be back soon!

So it’s official – I have re-emerged from the underworld to enjoy life once more, for about 19 to 22 days, hopefully consecutively.

After whining about missing two parties Saturday night, I ended up attending yet another party via Skype. My friends in Michigan were having a party and so I chatted with them first on IRC and then on Skype so we could do video/voice instead of chat. :)

And then after that, my husband decided he was going to head over to one of our local friends’ parties, so I said ‘hang on’ and quickly changed out of my pajamas. I was still on Tylenol 3 Saturday night for the pain, though the bleeding was subsiding again. I took it easy at the party, which appeared to be winding down by the time we got there, anyway.

On Sunday, my husband did not have band practice or game night scheduled, so we decided to hang out together and do something other than housework, which we hate. I was feeling much better, so we decided to go for a hike. The walk we’d taken on Friday had struck something in me – I was determined to really get the ball rolling on taking back my body this year – so having lived after going for a walk during the throes of endometriosis, I decided that coming off of all that pain, we’d go hiking. I wanted to be near the ocean, since it was still brimming with energy after the horrific earthquake in Chile had triggered tsunami advisories and warnings.

My husband mapped out Muir Beach, and we headed out.

Of course, that’s when the bleeding and cramps decided to return.

Determined, I loaded up on 600mg ibuprofen gel-caps, extra pads and water, and off we went.

Once there, I was super relieved to know there were portable toilets on site, cuz I really had to go. I wondered if this might ruin my hiking experience if my body was going to keep bleeding and cramping and doing the “i really gotta pee” thing every half hour or less.

Still determined, I used the bathroom and we set off on our hike, no turning back.

I walked reeeeeeally slow and was out of breath almost immediately. I was afraid I wouldn’t even make it to the top of the first hill off the beach, much less try to complete the entire hiking path. People of all ages, including the elderly, passed me as though I were a turtle.

I remarked to my husband that I wished I’d worn my yellow shirt for endometriosis awareness, or a shirt that reads, “I have an incurable debilitating illness”. I felt like I owed people an excuse for why I was so slow. I felt like every person who passed me was judging me. In fact, one yuppie couple did judge us as they passed us. They were talking about fat people and not being in shape and all that, and as they passed us, they stopped talking about the subject. I wanted to yell out HONEY! I SURE AM IN A LOT OF PAIN FROM MY INCURABLE AUTOIMMUNE DISORDER, BUT I COULD GO FOR A HOT FUDGE SUNDAE RIGHT NOW!

heh…maybe next time I’ll be openly snarky.

Throughout the hike, my husband asked me if I needed to stop and rest. He was very patient with me and did not get too far ahead of me at any time. He encouraged me the whole time, despite my fears and insecurities about being able to go very far.

When we got to the top of the next hill, we got an amazing view of the cliffs and the ocean. That’s when I got my courage and strength.

I think we went two to two and a half miles all told, and as the sun was really beginning to set, I told my husband we should turn back around. We had been looking for Pirate’s Cove, but hadn’t found it. I was sad about that, but at the same time I was so proud of myself for how far I had come. On the way back, I had bursts of energy that had me nearly running down the path. Then I tried to leap over a muddy spot, and jarred my pelvis at just the wrong angle, and it set off intense cramps.

The rest of the hike back to the car was painful – I had to urinate, my pelvis hurt, my legs were beginning to shake nearly uncontrollably, and I was getting very cold.

But we made it back! We did it!

We were both so happy to get back to the car – even my husband said he’d gotten quite a workout. I had to pop 600mg more of ibuprofen gel-caps and a half of a Tylenol 3.
To celebrate my awesome trek after having been bedridden 24 hours prior, my husband took us to The Melting Pot, where we ate ourselves into a coma.

TAKE THAT, YUPPIE HIKERS FROM HELL. :)

I have been trying to score an appointment with a reproductive endocrinologist (RE) for a year, now. For one reason or another, the REs that I’d contacted never got back to me, or I had to cancel the appointments – it’s hard to track back in my calendar why it hasn’t worked out.

But today! Today I began going down the list of reproductive endocrinologists in my area as per Aetna’s website. I found that the first one – Dr. Ryszard Chetkowski – has a record against him. Some kind of public reprimand set in 1997 and not due to expire until March 31, 2010! There’s no way I wanted to book an appointment with him.

NEXT!

I called the office of Dr. Mary Hinckley and Dr. Deborah Wachs. I was told by the receptionist that the REs there will ONLY see patients who are looking to get pregnant!!!
So you have experience as an RE, you know the inner workings of your patients, you have basically what I call the user’s manual to that area of the body, but you REFUSE to help a woman with endometriosis simply because she does not wish to have children?!?!?!

This is the second time I have been given this line. The first time was on February 4, 2010, when the receptionist for Dr. David Adamson – also a RE – told me he does not see patients with endo unless they wanna get knocked up.

I was so triggered by the receptionist at the office of Dr. Mary Hinckley and Dr. Deborah Wachs that I nearly gave up. I felt the rage surging. But I took a deep breath, exhaled slowly, and went on down my insurance list.

I contacted the offices of reproductive endocrinology at UCSF/Mt. Zion, where I’d had my laparoscopy in 2007, and within minutes I scored an appointment with a Dr. Linda Giudice.

I decided to look her up – do a background check – to make sure she would be okay, since the receptionist let slip that Dr. Giudice works in the same office as Dr. Sharon Knight, who saw me back around 2001 and refused to do a lap on me, and whom I filed a complaint against after stage III endometriosis was found by her colleague, Dr. Marilyn Milkman, six years later.

What I found out about Dr. Giudice made me burst into tears.

According to the World Endometriosis Research Foundation, Linda Giudice was appointed vice president of their foundation in October 2006.
Their site says “Professor Giudice is a biochemist, gynaecologist, and reproductive endocrinologist who specialises in endometriosis, infertility, assisted reproduction, and ovulatory disorders. Her research includes environmental impacts on reproductive health, endometrial biology, and placental-uterine interactions.”

According to endometriosis.ca in April, 2008, Dr. Linda Giudice was appointed to the National Institutes of Health (NIH) Advisory Committee on Research on Women’s Health (ACRWH).

According to endometriosis.org in November, 2008, The American Society of Reproductive Medicine (ASRM) gave Dr. Giudice the Distinguished Researcher Award, adding that she has “devoted decades of her career to the study of endometriosis.”

More from endometriosis.org – “Professor Linda Giudice, has spent much of the last two decades studying the human endometrium, including normal and abnormal aspects of endometrial development and the relevance of that development to miscarriage, implantation disorders, foetal growth, and endometriosis.

“As a classic physican-scientist, whose long career of very productive research has advanced the field of reproductive medicine and biology, Professor Giudice is a very deserving recipient of the Distinguished Researcher Award”, said Andrew La Barbera PhD HCLD, ASRM’s Scientific Director. “She is unusual in that she does both basic and clinical research. She has made significant contributions to the understanding of signal transduction in ovarian and uterine cells”, he said, citing her three decades of productive research and her ongoing success in advancing understanding of signal transduction and communication among cells within reproductive tissues as the basis for her selection as the recipient of this prestigius award, which was designed to recognise meritorious research within the previous decade.”

She has no state or federal public actions against her as a medical practitioner.

My appointment with her is April 21. :)