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Polycystic Ovary Syndrome, PCOS

The past few months have been really challenging for me. I got really ill and over the course of the many doctor visits and tests that were run I realized that it’s been almost 2 years since I really listened to what my body was telling me. Rather, I’ve just learned to live with the variety of symptoms I was having and pressed on. I was engaged, trying to figure out how to move close to the kids, didn’t have health care, then getting married, moving, working….

I had 2 miscarriages in about a year. I have had ongoing pain in my right chest and ribs. It’s at the point that I can’t even sleep on my right side and Joe can’t put his arm around me because the pain was so much at night. And tired. Holy Moley tired. I’ve had a heck of a time losing weight and I feel dizzy and disoriented sometimes after I eat. I had blood tests done but they didn’t show I had diabetes. And I started to think I was just falling apart. So I ignored everything since I couldn’t solve it. So, after a year or so, I went back to the doctor. The result of the last batch of tests is that I have two major things going on.

First, I have scar tissue on the lower third of my right lung. This creates a dynamic of not letting my lung work too hard and taking very strong anti-inflammatory drugs and hopefully in about 6 months that problem will be mostly gone although it might never really go all the way away.

Second, I have Polycystic Ovary Syndrome, also known as Stein-Leventhal syndrome. With PCOS, I have cysts all over my ovaries which may or may not be cancerous. I have a much higher chance of getting Type 2 Diabetes, heart disease, being infertile as well as having cancer in the uterus or breast. PCOS is incurable but can be controlled through diet, medication and lifestyle.

Strangely, since finding out what the problem is, I have had strong sense of calm and being centered. Joe has been such a help and support to me. I have hope to control the imbalance that has been so prevalent the past year or so. And although there are things that are uncertain like if the cysts are cancerous, I feel very empowered. PCOS is inherited and will be passed to my kids. My daughter in particular has a very high chance of seeing this syndrome fully manifested if she isn’t careful starting right away since she has hit puberty. My boys have the chance of going bald early, which is pretty much the only way it shows up in boys, and I see that already with Devon who is 16.

There is some information out there if you know where to look. One of my favorite sites is this one: www.pcos-support.org . These are also good: www.soulcysters.net
www.ovarian-cysts-pcos.com
www.4woman.gov

Tally Ho.

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Your Body Is Not Your Enemy

Let me set the scene for you.

We’re sitting on the couch, my husband and I, my nose buried in his shoulder. I’m weeping, beside myself with a ball of grief and failure burning through my chest like fire, wiping snot on his arm, making noises that are approximations of words, but no one can know for sure. I have auto-immune issues that after several years of being in remission have reared their ugly head starting sometime last December and have now flared with the vengeance of a fifteen-year-old girl who lost her cellphone privileges and is punishing her parents. I can’t sit very long without pain. I can’t stand very long without pain. And moving from one of those positions to the other also hurts quite a bit. I am not strong. I am weak. I am in pain. I am frustrated, angry, and deeply sad.

He’s so patient, my husband, and the very best kind of person, who has actually been listening to me over the preceding twelve years of marriage together, so that when I fall apart like this, he can throw all the things I’ve said back in my face. Which is wonderful and exactly what I need.

“I’m a failure,” I moan, “I’m tired of being sick and in pain,” or something close to that, anyway. There’s some grunting and high-pitched wails.

“I thought I had beat this thing. I really did! Almost four great years,” is what I was trying to say. Probably it sounded more like, waaaaaaaaaaaaaaaaaaablubblubblub, but he knew what I meant anyway, because he’s very clever.

“What about all the inspirational stuff you say all the time? You’re enough? You can do hard things? You’re right where you’re supposed to be, right?” my husband asks, rubbing my arm and reaching for the gentlemanly handkerchief he keeps in his back left pocket, just like my father always did. Sadly, I think we’re way past saving his shirt at this point.

My shoulders and hips are aching because of the awkward position I’m in, twisted to be closer to him, possibly to climb inside his skin. Sharp pains call attention to my right ovary where a golf ball-sized cyst has recently burst and has begun slowly exhaling in excruciating slowness. I must turn my body straight or I’ll be up for hours with throbbing in all my joints and unable to sleep.

“You believe in Divine Timing,” he reminds me as he dries my cheeks and begins to corral the snot stream from my swollen nose.

“Oh, stop it. I did believe in it. I did believe all those things! But maybe not now,” I blubber. I grab some tissues and help in the clean-up attempt of my face. My head begins to pound. Oh, I’m really starting to feel sorry for myself now. “I mean, I can’t even help put the laundry away! Or load the dishwasher!” I flourish my right arm about to emphasize my point.

Which are absolute facts, by the way. Bending from the waist sends waves of throbbing pain down my right leg. I can’t squat, either, because I’ve lost most of the strength in my thighs. I refuse to take the heavy painkillers, mostly because they make me feel so nauseated, but also they make me useless and I wouldn’t get any laundry or dishes loaded anyway. Pain or nausea, pain or nausea. Another thing to feel sad about. A fresh wave of tears hits me like a tsunami.

“So. You believe all that stuff you say, but only on your good days, is that it?” He looks steadily at me with his blue eyes, a slight twinkle in the right one and blankets of love in both. “The whole point is that you believe it on the bad days, too.”

I immediately stop brandishing my ineffective arms around and get very still. The truth of what he says sings to my heart.

I think I’m different than everyone else, apparently. I’m destined to only have good days, is that it? All the things I’ve told my clients over the years come rushing back to me. Go easy on yourself. There will be good days after the bad days, you just have to wait it out. Self care is paramount. Learn to say no without guilt. Create your healing cocoon.

Your body is not your enemy. It’s trying to save your life. Have gratitude.

IMG_4105My husband, who insists he knows nothing about the healing arts, leans down and kisses my red and puffy face with a fierce tenderness that could slay a dragon.

“Being ill sucks and hurts and is the very worst, but it is not a failure,” I say out loud to him. He nods and then turns on Netflix and an episode of 30 Rock where Tina Fey’s character, Liz Lemon, allows her boyfriend, Dennis Duffy, to move in with her and he calls her dummy, in a sort-of affectionate way, which she puts up with.

“Liz Lemon needs more affirmations regarding self-worth,” I tell him. And he sagely nods.

(Also, this.)

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Storyteller: Jill Krause aka Baby Rabies

Jill Krause1. I started blogging in the summer of 2007 when I decided I wanted to, well, get pregnant. And I, oddly, wanted to document that process and what followed in great detail.

2. At this point, it’s such a part of me that I don’t know how not to tell stories on my blog. In the beginning, though, it was to get these crazy thoughts out of my head because I knew I was changing, that my viewpoint was shifting. I wanted to look back on that process.

3. The glamorous answer- I tend to my lovely 3 children while balancing blogging and a freelance writing & photography/consulting career. On my free time I run and craft, and watch House of Cards with my hot husband.

The realistic answer– I manage to keep 3 kids alive while blogging in my baby-snot-crusted pajamas. Somedays I do manage to brush my teeth. I answer a lot of emails in order of those I think might make my life easier quickest. I run because, in combination with my anxiety meds, it makes me feel less crazy. My hot husband and I do watch House of Cards together on our free time, which is to say we will probably get done with season 2 in 3 years.

4. If I had a million dollars… I think I’d remind myself that that’s not a lot of dollars. Relatively, you know? So I’d like to think I’d be a grown up and do things like invest it and pay off debt and NOT take off on a round-the-world field trip with the whole family for as long as we could afford it. But I can’t be certain.

5. I think this is where I would tell you about the cystical (a testicle cyst) I developed in my last pregnancy, except I already told the world that secret. Or maybe I’d tell you about how I eat rocks and sand when I’m pregnant? Except, no. Because that’s not a secret either. Uhmmm….. okay, I don’t like water parks. There. I said it.

6. I want people to know that I have no idea what I’m doing. I have nothing figured out. I’m not an expert at anything. That feels very good to get out there.

Find Jill on Twitter @babyrabies and read her stories on her blog, Baby Rabies. Thanks, Jill! Find all the Storytellers here.

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Remember That One Time? When I Had Lupus?

Here’s the skinny – I have lupus. Here’s the story, and it goes a little something like this –

Lupus affects skin, joints, blood, and kidneys – for me specifically = pulmonary hypertension and pleurisy/chest pain 3 winters in a row in 2001-03 and now off and on, swollen lymph nodes, memory problems, confusion, headaches, high fevers, behavioral changes such as depression and bipolar, personality change and psychosis***, fatigue, painful joints, anemia, rash on forehead and beginning on cheeks, sun sensitivity, hair loss, abdominal pain, nausea, and vomiting, abnormal heart rhythms, blood in the urine and long-term elevated white-blood count since a child.

The Lupus begat

Fibromyalgia, a full party on its own including widespread musculoskeletal pain, more fatigue, sleep, memory and mood issues, more headaches and irritable bowel syndrome.

The Lupus also begat

PCOS -cysts in my ovaries causing pain, miscarriages, hormone disorders (more headaches, exhaustion again)

Hashimotos -hypo-thyroid, male-pattern baldness, weight gain, also exhaustion (I’M TIRED, OK?), more depression, mania, sensitivity to cold and heat, constipation, migraines, muscle weakness, cramps, memory loss.

And last but not least, The Lupus begat

Barely working liver and spleen, kidney issues, food sensitivities.

The DID is a separate issue, but by this time, your head is probably spinning and it might be hard to distinguish one thing from the other. Get out your punch card! You’ve all won a free hoagie!

And all because of a kitty that didn’t want to have a bath. Yes, my docs believe I have lupus because of an ornery, panicked kitty with bacteria on his claws that punctured me in the back and activated a lupus gene lying dormant inside me in 1997. And the leg bone’s connected to the brain bone. Who knew?

SO anyway, at this point I give you permission to use the phrase, in the most sarcastic voice possible, “Thanks A LOT, The LUPUS!”, every time something in your life goes wrong, because the kids and I are getting quite good at it. Example being, you all pile in the car to go out to dinner and someone forgets their wallet, well, Thanks a LOT, The Lupus! Or you knocked over your glass of milk. Or forgot someone’s birthday. Or stubbed your toe. Seriously. Try it. It’s good fun. The possibilities are endless.

Lupus is kind of scary. Here is a good website with lots of info. Lupus.org. I have Subacute Systemic Lupus, meaning it’s not full blown, if you can imagine. And actually, I can. It could be so much worse. Lupus in an auto-immune disease, so basically, your body eats itself up acting like your organs are foreign enemies that must be obliterated. Friendly fire, if you will.

In Acute Lupus, you’re losing parts or whole organs, taking steroids to slow the process and getting your affairs in order. You are your own worst enemy.

In Subacute, your body is just waiting for an excuse to be a real jerk, but it’s not quite there yet.

So, YAY for Subacute!

And here comes the boring part, mostly for my personal history record. I have a lot left to learn about lupus. I could be wrong about some stuff I think I know.

My plan of attack at the moment is building, not detoxing. My spleen and liver couldn’t handle it and my intestines aren’t working, so if I get more toxic, those toxins would just go round and round in my body killing me slowly with their song. I need to get stronger and help my immune system work if at all possible. I can’t stay in the sun very long. I can’t exercise vertically. So I have to get creative.

MY TEAM of docs and heathcare providers include –

Rheumatologist
OBGYN
Homeopath
Acupuncturist
Yoga Instructor
Psychiatrist

My Rheumatologist and Homeopath have given me mostly the same diet suggestions, which follows closely to the Blood Type O diet found here. Heavy on the protein and dark green veggies, very, very low on the carbs and starches, light on the fruit and dairy. No sugar, caffeine.

What I currently take daily –

-Prescribed Meds
—Synthroid 112 mcg/morning
—Trazedone 100mg/night
—Lamictal 100mg/night
—Prilosec OTC 1/night
—Acetaminophen as needed, up to 3000mg/day

Next week I will add-
—Flexeril
—Plaquenil
And one of these – Mobic, Naproxen, or Relafen.

-Current Supplements
—The Blood Type Diet “O”, Live Cell
—The Blood Type Diet “O”, Polyvite
—Nordic Naturals, Balanced Omega Combination
—Dr. Clark Store, Allied Amino Acids

Next week I will add-
—PepZin GI
—Digest Gold

Also next week I will have more tests with the OBGYN and get a sense of the damage done to my ovaries, kidneys etc. It’s the missing piece of knowledge. Once I have those results, I’ll pretty much know exactly where I am and how far I need to go to get stable.

***YES. THERE IS A LOT TO PROCESS HERE. I HAVEN’T EVEN BEGUN TO FIGURE OUT HOW I FEEL ABOUT THIS. That is why it’s down here at the bottom and not explored in this post.

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I'm SO Helpful

Last week I went to a Quaker event hosted by Yvonne. I was totally prepared to be awesome and give back and all that stuff. I mean, I AM THAT PERSON. The one that wants to buy local, organic food, conserve water (I turn the water off while I brush! And I only condition once, bleached, colored, damaged hair be damned!), ride a bike instead of a foul beast of a van (I don’t really do this one. I don’t own a bike but I do own Bessy, my black Astro Van that consumes more fuel than a launching rocket ship and kills us all by destroying the ozone layer. Why is it so expensive to not kill us? I want a hybrid.) and use my eco-friendly reusable cloth grocery bags when I go shopping and wants to help the baby puppies and the wild, jungle animals, and the charities that help with micro-loans and the Toys for Tots and help at the Soup Kitchen and make quilts for the homeless (I did this only one time but I’m still counting it.) So. You can see why when Yvonne wanted me to help out at the LA Food Bank, I was all over it. I like to recycle, people!

The thing I didn’t plan on happening was this stupid cyst thing that made me into a frail, whiny, limp-noodle of a person. A few days previous my left ovary said, Hey! I’m bored! I’m going to see what happens when I poke one of these cysts! And then a slow stream of cyst fluid (What is in there, anyway? Maybe I don’t want to know.) began its exit and made it’s way into every pain receptor in a 5-mile area. And sometimes it whispered ‘fuck you’ in a tiny, ghost of a voice behind my back, just loud enough that I could hear it and not get comfortable for hours and then suddenly it would be all, HEYYOUMOTHERFUCKER! I OWN YOU, BITCH! and I would drop to my knees and die.

So, back to the day of the Quaker event, my ovarian cyst was just very uncomfortable as apposed to an 11. So, I figured, dude, this is no big thang. I’ll drive there, be awesome with all my giving back and shit, and then go home. Easy-peasy.

Who’s bored? Do a little stretch at your desk, wake yourself up and come back. I’ll wait.

OK. So. Everything was fine. I found the place with no errors. There was a parking spot up front. I found Yvonne right away. Smooth Sailing, my friends. But, then I had to walk up two flights of stairs to use the bathroom and that was all it took. My ovary used a voice synthesizer to sound like Satan and laughed and laughed at me.

I went downstairs and tried to act like nothing was wrong. I looked in the direction of talking people and tried to smile and look interested. And then the tour of the facility started and we walked up those same two flights of stairs. Again. Another time. Did I mention it was one more time? But, I was already there! Why leave now? I wasn’t going to give up. I was going to be STRONG.

The nice lady walked us through different warehouses and talked about food distribution and companies who give the food and who picks it up and lots of other interesting (really) stuff and I listened enough to write this sentence. A nice guy showed us some backpacks and told us to wipe them out to clean them and then we would fill them with food for some kids. Helping kids, y’all! I started wiping. And I was in pain. And I felt like a failure. And I was in pain. And then Yvonne came to the table and started cleaning backpacks by me and I thought, ok, I’ll just tell her I MIGHT have to leave. Not that I am because maybe I won’t. But I should mention that I MIGHT have to. Yvonne told me going home was the obvious thing to do. And I realized that DUH, it was what I should do and then it happened. I started crying.

My eyes welled up. My face turned red. And Yvonne was all, Leah! Why are you crying? And I was all, Bluh Bluhbluuuuh. And she said, Seriously, you should go now. And I said BLLUUUHbluh in a loud whisper. And I looked for a way to get out of the room without it becoming a big deal and headed that direction. But I couldn’t find the door and I walked though isles and whispered bluuhbluh and then there was a guy and I gestured and pointed, trying to act out a door. He sent me the right way and I got downstairs and just about had my crying under control. Then I realized this was not the place we had come in and I had no idea where I was. There was a long hallway of doors and offices and it seriously got longer and longer while I looked at it. I started walking and randomly opening up doors trying to find an exit until a nice lady in a red suit came out. She looked at me, blinked and then turned into my Aunt Murtle. With her arm around me, she shooed me softly out the door and said (I SHIT YOU NOT) ‘We all have bad days, dear. Buy your self a fresh, new pack of Twizzlers.’ And then with her left arm, she pointed towards a building where I should go.

WELL. Anyone need more stretching time? Maybe head banging on the wall time?

I walked in that building, in burning pain, head held high, crying a little, mascara smeared on only one side, and bumped into an older gentleman wearing overalls. He started to tell me I was in the wrong place and then looked at my face. He ‘oh deared’ me and offered me a handkerchief, changed his mind, handed me a tissue. I tried to ask him where the GOOD parking lot was where my VAN was but he heard bluuhuhuBLUHHHuuh? And he asked a man who was working on a forklift doing actual WORK to stop, climb down and walk me through two more warehouses and to the parking lot. Not only was I not volunteering but I took a person who was ACTUALLY WORKING off his forklift. The kids should hate me, y’all.

He tried to make polite conversation until he realized I was mute. He started pointing out a few things as we walked through the rooms but then stopped when he realized I was too fragile of a flower to bother with all that businessy food real-life stuff. He took my arm and walked me around a pool of water and then warned me when we came to a speed bump. When we exited to the right parking lot, he asked me if I saw my vehicle in a voice that meant he wasn’t sure if I should be operating large machinery. He glanced at both my wrists and neck for some kind of medical tag and emergency number, but found none. I assured him I was fine. FINE. And he watched me climb in my van, only tripping twice, turn the ignition on a second time and make that horrible grinding, whining noise that indicates a newbie driver, fumble with my sunglasses and blow my nose. He waved to me as I pulled out into the street. I pulled over about a block up the road and really let it all out where I hoped he couldn’t see me. And then I drove home.

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Bursting Like the 4th of July

On Tuesday night I had my first bursting cyst. I’m hoping I don’t have to go through that too many more times. The pain is right up there near the top of My Top 10 List of Most Painful Experiences.

This is a great read by Paul Ford which captures some of my own feelings about the past few weeks and our government’s ineptitude.

Also, thank you for all your well wishes. Sorry if I don’t write you back right away but please know I do so appreciate them.

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PCOS Update

I have the results back from the internal ultrasound. The ultrasound, by the way, was one of the most uncomfortable things I’ve ever done. I think the woman that did it was angry at my vagina. Or she was angry at someone else’s and took it out on mine. In any case, she created some kind of paper-cut feeling throughout the inside which was very painful for a few days. The cover she used on the wand was made out of some crinkly plastic, kind of like what a shower cap is made out of. It had a seam all the way around the edges which she used to torture me with. I found out later that they usually use a condom on the wand. What’s up with that? A condom would have been a great choice!

Anyway, the more important part of the story is that the results show that the largest cysts are just under an inch and fluid filled. None are dense looking and will not need to be checked out for cancer. I just have to wait and see if my body will reabsorb them or if they will burst. It’s a fun game, yes? I didn’t know I was so worried about it. But after saying out loud to Joe for the 40th time, “The cysts are fluid filled,” I guessed I must have been more worried than I let myself know.

So, from here on out it’s no beer for me, getting more than adequate sleep, never eating protein or carbs unless they are together and always exercising first thing in the morning before eating anything. And by the time 6 months rolls around, I’ll be feeling much better, I can tell already. Everything that happens in life is a blessing somehow and it’s our job to figure out how. I’m still working this one out. I can’t quite see it yet but I know it’s in there somewhere.

Joe has been incredibly supportive. He has been sweet and understanding and comforting. Everything a great partner should be. I really struggle with feeling inadequate since I’m not exactly holding up my end of the load here. He’s got a lot of extra pressure to make more money since I’m working less hours at work for the next few months. And through it all, he keeps calling me baby and scratches my back at night before I fall asleep. He tells me I’m beautiful after I’ve been crying for 5 hours straight from the pain. He strokes my hair and tells me what a great job I’m doing taking care of myself. I think I’m falling in love with my husband all over again.