Endometriosis wrap up – September

This disease is complicated, delicate, fickle and endless. I haven’t posted for months because things got really dark for a while. But hmmm. How do I fill you in?

Let’s do a 4 month wrap up, rap rap rap up!
(30 Rock ref)

SEPTEMBER

September was a shitty month. I completely folded into myself and shut out the world. I dealt with weeks of such severe chronic nausea I thought I would pull my hair out. I lost a lot of weight. I mostly slept through this entire month.

My long awaited period finally arrived too. And it was…fairly insignificant. In terms of pain and general life destruction. I popped a few Naproxen, hugged my heating pad for a couple of days, then it was over. I was ecstatic, yet suspicious. Like that period was a Trojan Horse, sent in to distract me from the one that would really kill me. But nothing else happened. Weird. I thought it was luck, but Mathias said it meant that biochemically things were starting to balance. Holla!

September also ushered in what turned out to be the first few whispers of depression. I lost all interest in doing anything, or seeing anyone, and I didn’t even care that I was heading in that direction. However it was also the first month that I started sleeping on a regular basis since October 2013, so its difficult to identify if my body was responding to inexplicable exhaustion, or depression, or both. Regardless, I spent most of the month in a dark room, on a tempurpedic bed, watching all 3 seasons of Veep in a row and sleeping. I slept A TON. And it was the most delicious, rewarding, wonderful thing I’ve experienced in a really long time.

This month is also when all endo pain stopped once and for all. I have had ZERO pain since September. You guys…I don’t even know how to handle this. Chronic daily pain for almost a decade and now nothing!??!!? What is so strange is how easily my body has adapted to being pain free. As if life has always been this way. Life always finds a way. My pain was SO severe, yet now as I’m trying to remember what life was like before, it’s hard to believe I wasn’t making it up. That old life seems so far away now.

MY PAIN IS GONE!!!!!!!!!!!!!!!

Stay tuned for October…

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Endo Update, sort of

for the first time this year, i leave the doctor’s office without anything wrong with me. granted it was the dentist, but considering i haven’t been in 4 years and she commented on how white my teeth are, i consider it a win. high five.

it’s been a while since i’ve updated this blog, because things got really rough and writing was the last thing i wanted to do.

but now things are better, so expect some updates soon. in the meantime, happy holidays! :)

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Endometriosis (because I can’t think of a good title)

Well hello little ones. Update time.

I saw Dr. Mathias 3 weeks ago, and crawled into his office weary and pessimistic, anticipating more dead ends.

We addressed the nausea and anxiety and myriad other symptoms which all led back to the Lupron. That effing Lupron! He explained that the estrogen spike Lupron causes within the first week of injection directly affects the neurotransmitters that control the limbic system which…guess what…controls sleep and anxiety, among other things.

I told him I had come to terms with my love/hate relationship with Xanax, and if I needed to increase the dosage, then so be it. Flying the white flag of surrender. But my concern was that my body seemed to be developing a resistance to the drug at an alarming rate, and I didn’t want to keep increasing my dosage to no avail. But I was at the point of needing a daily dose so what’s a girl to do?? 1mg puts me to sleep during the day, but 1/2mg doesn’t even touch it.

Even though he called me a “challenge”, he wasn’t fazed by my body’s apparent disregard for itself. While my symptoms are definitely on the more severe side, it was simply because I responded really well to the Lupron. So it’s going to take a bit more to get me back to normal.

He suggested a very safe drug for my daytime anxiety – Gabapentin. The typical dosage is between 800-900mg, but he has me on 100mg 3x/day. I noticed a difference THE DAY I started this. The Gabapentin has done wonders for my daytime anxiety, and has actually helped in decreasing the amount of Xanax I need at night. Sometimes I only need 1mg!!! This, you guys, is huge.

As far as the nausea goes, he said it’s the birth control. So he took me off of it until I start a period, then I’ll hop back on continuously and my hormones will be balanced and I’ll feel amazing (my hopes and dreams). My body is a boiling mess right now, trying to recalibrate after the shit storm of hormone therapy it’s endured since April, and the birth control was interfering with that balance.

“Well, what if it takes 1-2-3 months before I have a period?” He shrugged his shoulders and said “Then we just wait.” Ok. But, everyone has done a sufficient job of putting the fear of god in me for when “the big event” happens.

“It will be terrible.”
“It will be straight from hell.”
The worst you’ve ever endured.” 

gulp

I explain that my pain was already at a 10… which is why I had this surgery in the first place. I can’t cope if it’s worse than that.

“Well, if that happens, just call our office and we will help you through it.”

“No no no. What if this happens at 6am on a Sunday? Then what will I do?”

“Ok, then here’s what I’ll do: I’ll prescribe you a pain medication that you squirt into one nostril, and it should take affect within 30 seconds.”

“And this works better than Vicodin and all those other pain meds?”

“Oh yes. You shouldn’t feel anything with this.”

That’s what I’m talking about. The med he prescribed is Butorphanal Tartrate. Anyone ever heard of it or used it? It is highly controlled, and there were about 5 security layers between me and the medication.

I keep the spray + tampons in a bag I call my “emergency kit”. My emergency kit goes with me EVERYWHERE, like a binky. One friend suggested to not be so afraid and instead say: “I know you’re coming and I’m ready for you.” I say that, but really, I’m still afraid. As if my uterus is planning some diabolical unveiling at the most inopportune moment, like my brother’s wedding next month.

As of now, my nausea has almost disappeared, to where I only get it a couple of times a week and it’s bearable. My anxiety has decreased too. It’s not completely gone, mind. Some nights I can fall asleep around 2:30am, some nights it’s still 6am. That’s why I’m not making a big deal about it either way. Sleep is still that tricky fly I’m trying to catch with chopsticks. But, no big deal.

I’ve passed the 60 day mark; now I’m eagerly awaiting Sept 27 which will be my 90 day mark and NO MORE LUPRON affecting my system. Heyoooh!

Dr. Mathias is quite the curious guy. While he prescribed me new medication for my anxiety, he also suggested that I go see a practitioner of BEST to clear my energy fields, because there are things in my genetic code that are interfering with my healing. Alright, done. I get my fields cleared on the 16th. I’ll keep you posted on the results.

OH! I almost forgot. A new blog is in the works. In an attempt to not be imprisoned by my endo diet, I acted on a whim and made gluten free/sugar free waffles with “fake” syrup. They were glorious. So I’ve decided to start an endo-friendly recipe blog to keep my brain from going to mush and to grease the wheels of the creativity train that has been idling by the platform. I have several recipes in the works and am really excited that having endo doesn’t mean I will be a “grilled chicken and veggies/no sauce” kind of girl for the rest of my life. Ima tear some food up, y’all.

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Lupron: my nemesis

Life has not gotten better since surgery. In fact, it’s getting worse. It’s 4:30AM as I sit here editing this post, preparing to publish it. I’m still awake…like every night. The anxiety keeps my body agitated and steals my sleep.

I’ve been reading a ton of endo blogs and have even become a member of a Facebook group for women with endo where I find a ton of support, and answers to questions about symptoms and drugs from women going through the same thing. It’s nice to have that community to lean on. Everyone is very kind, and quick to give sound advice.

My last Lupron shot was June 27. Which means by July 27 it was walking its way out of my system. Around that time my anxiety SURGED, to where I am now taking 4mg of Xanax at night, apparently to no avail. The anxiety has trickled into my days as well, which means daily doses are now on the horizon. And the nausea…oh god the nausea. It’s unbearable. I am nauseated all day long. I count my days by the hour now, considering each one a victory when I don’t feel like puking.

I had my post-op with Mangal last week…here he is!

photo (3)

He wanted to keep me off of the birth control until I had a cycle, but I’ve been feeling so awful I begged him to put me back on it. If I don’t have a period after these next 3 rounds then they are going to force one via injection…I think is what he said. I’m sure that won’t be pleasant.

I called him yesterday to see if I could have something for the nausea, but he hesitated in giving me anything because it will make the lake dirty… if you remember that analogy. He suspected it was the birth control causing the nausea. Well…I have to take the birth control to keep the endo from coming back, so what am I supposed to do? He suggested diet and exercise, but I’m active daily and have been following the endo diet for months anyway. Dead end.

Today I talked to a nurse at Mathias’s office, and as she read aloud all of the side effects of Lupron, it was me. Hair loss, extreme thirst, nausea, anxiety, hot flashes…those were just a handful of everything that it can cause. I’ve experienced almost every single one. She explained that what happened is that the Lupron told my body “Hey, shut everything down, right now!” but then adding the birth control too is saying “Weeeeell wait a minute. Maybe don’t quite shut everything down,” in an attempt to minimize the symptoms I have now. Imagine the state of confusion that can cause. Especially in a body already distressed from a chronic disease.

Her thoughts: It may be the end of September/beginning of October before I will start to feel normal again. My hormones are going nuts right now. The Lupron has packed its bags, looked happily around at the devastation it caused, and left without looking back. Now my body is fighting the signals Lupron gave, which is causing all sorts of chaos. In a nutshell, the Lupron did a great job of suppressing everything, which is why I’m having such extreme reactions now.

None of my symptoms alarmed her, which somewhat comforted me. She said she’s been doing this for 20 years, and all they can do is treat the symptoms (anxiety/nausea, etc.) until everything balances out. That could be tomorrow, or in a month – everyone is different. But the general rule for Lupron is to wait 60-90 days after your last injection before things go back to normal.

She’s going to talk to Mathias about switching my birth control, due to the nausea and because I’m on a very lose dose that probably won’t stop my period on continual therapy. She also mentioned that my period, when it comes, is going to be straight from hell – so I have that to look forward to.

Overall, I’m scared and confused. My body is spiraling out of control and I’ve never been this sick. I have a team of doctors to consult, but it takes time to get a hold of each one, explain what’s going on, the timing of each past procedure, what meds I’ve tried, and what to do next. And if someone gives me conflicting information, then I have to start all over. I’ve been treading water in this lake of hope, waiting for someone to throw me a life raft. But now, I would simply settle for someone saying, “Just sink. It’s not going to get any better than this.” Because secretly I feel like that is the real answer, but no one wants to tell me.

I’m afraid my body won’t bounce back. I don’t see a light at the end of the tunnel. I’m afraid of the amount of Xanax I have to take because my body won’t stop shaking. I’m afraid to add more meds to my already fragile system. I feel like I’m damned with any option I choose. Nausea meds will take care of the nausea, but it will further damage my bowel. What do I choose? There is a cocktail of drugs swirling inside of me, my hormones are bouncing off the walls looking for a place to stick, and everything is manifesting into terrible physical trauma.

If I had known ANY of this was waiting for me on the other side of surgery, I’m not sure I could have gone through with it. I’m glad I didn’t know.

I don’t know when it will end. No one knows. It’s just a waiting game. And that’s the most hopeless part of it all. Until then, what happens? I just keep increasing my Xanax? Change birth control every other week? Watch helplessly as my hair falls out in clumps?

Being this helpless is alarming. I’ve taken so much action to care for myself, and I still can’t help my body. I’m completely dependent on my doctors and their compassion for me when it comes to my healing. But naturally they aren’t as invested as I am.

I’ve been thinking a lot about Robin Williams this week. While I would never commit suicide (karma, man…karma), I do understand why he took his life. When everything is so bleak that you can’t see if a new dawn awaits you…well, there’s such hopelessness in that. It dissolves any desire to keep going. Night after night, when it’s 4AM and I’m wide-awake with nausea, a migraine, and pacing my bedroom because my body is shaking with anxiety, I’m thinking: “What is the point? This is no way to live.” I feel such compassion for him because I know how dark it can get, and how alone you can feel.

It’s exhausting and sad. But then the morning comes, and I take more action. I do more research, I call my doctors repeatedly until I speak to someone. I leave voicemails. I keep a log of my symptoms. I look for answers. I ask for help. I post questions to forums. I beg the universe for someone to have a solution. I wait for results.

But the day wears on and eventually my old friends Anxiety and Nausea come strolling up, hand in hand, ready to embrace me. I sit down and weep. Another day of defeat.

It’s after 5AM now, and sleep is on the other side of the world. Time to go make a snack, put on a movie, and do some more pacing.

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Recovery….sounds like a typical bastard

Recovery blows. Like, for real. I’ve been in some foul moods.

I mistakenly thought this would be the last step in my journey. I think most people thought that. I realize now it isn’t. It isn’t the beginning, or the middle, or the last giant mountain to scale. It’s just another damn step I have to take (among a zillion steps) in figuring out how to care for this dysfunctioning body of mine. The effect of this realization feels like a vacuum sucking all hope out of my tired body.

Here we go with another cycle of emotions again: frustration, anger, depression, hopelessness.

My insomnia is back. Old friend. Saved ya a spot next to me on my bed.

The week after surgery I was sleeping 12-13 hours per night. So that became my new standard. I was overexcited and formed expectations that are not being met now. Throw in a sour attitude and you have one pissed off girl recovering from a laparotomy.

The “in between” stage was my happiest. It was the end of April to the beginning of July (in between my 2 surgeries), and was the best I’ve felt in a decade. No pain. No worries. I was also on heaps of hormones. My body does well with hormones.

Man. I really miss ‘em. Dr. Mangal has taken me off of the Lupron and birth control until I see him this upcoming week for my post-op, and I feel like he’s taken my life away. Now, my daily symptoms consist of really intense hot and cold flashes, stabbing intestinal pain, nausea, crying, migraines, bowel issues, early satiety, and an overall sense of discomfort that is so aggravating I want to scream.

I can’t even meditate. I lie down, and instantly I’m cold, so I get a blanket. 30 seconds later, as I’m settling in, I get a hot flash and have to throw the blanket off. 2 minutes after that I’m cold again so I leave the blanket where it is but put socks on. I settle in. Everything seems calm, then I’m slammed with a migraine and another hot flash.

I take smalls walks, watch Netflix, read books, magazines, stare at the wall, get lost in my thoughts, wander from one end of the house to the other, organize my soundcloud and spotify playlists, cook, curl my hair, paint my nails, try to master cat eyeliner, look up recipes for things I can’t eat but want to cook anyway…anything to take my mind off of my body.

I’m frustrated. I don’t want to see anyone or talk most days. Most days are bad days. I’m arguing with my parents a lot, which is a rare occurrence. The problem is me. It’s my attitude. I’m angry because my body isn’t performing like I expected it to, and…I don’t know…maybe there’s a little bit of resentment against myself too. I want to step away from my body and yell: “I’ve done all of this for you!! Why can’t you just meet me half way and function? What the hell is wrong with you??” I feel like screaming and throwing in a few fallopian punches for good measure.

Temporary. Temporary. Temporary.

Right?…..

And here it goes again –> back to acceptance and surrender. I always always always find myself back here.

Time to remove my expectations and accept what is. I begin to ask myself questions like, “How will I handle it if this is my life from now on?” Will the universe form a new life to accommodate that?” I let the questions hang in the air, while I stand back and watch everything I’ve held true about my life crumble. I’m fine with that. But I’m waiting for something new to show up in its place.

Again I decide to unclench my jaw and relax. If my body doesn’t want to sleep until 5am then hey, whatever. If I can’t ingest anything but chicken and water, whatever. I’ve got two more seasons of An Idiot Abroad to watch anyway, so I need the time. Again, I throw out my timelines of when I should be sleeping and when I should be feeling better.

I made this attitude change last Thursday, and I’ve been significantly less woebegone since. Don’t get me wrong – I still feel like bulldozed shit. But this is my “health sabbatical” my friend Boka said, and she’s right. So I suppose feeling like shit is only natural.

Any movie or show recommendations – send ‘em my way. I got nothing but time.

 

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Putting the ME in EndoMEtriosis-Part 1

I was really touched when I asked myself to be a guest writer on Erin’s blog to talk about her surgery.  I know that this Endo journey has been a really personal one for her and I was really excited at the opportunity to be able to show her how much it affected me and that it wasn’t just all about her.  And especially since she slept through the whole actual surgery part, I could add details that she wasn’t privy to.  For those who were expecting Erin’s usual lyrical posts, I apologize.  She will be back after she has regained her strength and figured out how to reset her password.

I hate hospitals.  Hate with a capital h and a ridiculous amount of emphasis on the “HHHH” sound so people know I’m serious.   They are terrifying places full of pain and crazy, unnatural things that we do to our body, and ghosts, and bad food and sterile smells.  Now with that being said, I LOVE the medical profession and everything that goes along with it-it’s a weird dichotomy, I get it.  I want to touch everything and ask a million questions and ask each nurse what the craziest thing they ever found in a patient was.  So seeing one of my bestest friends in one of these places was a conflicting event.

We all arrived at the ol’ Slicery early in the morning on Tuesday-530am to be exact.  She won the prize of being the first patient of the day.  Sadly the prize was being cut open from hilt to tilt so I was glad that I wasn’t entered in this contest.  Her surgery was scheduled to start at 730am so we started to wait.  It wasn’t a terrible little party with her mom and dad and Rodrigo.  We made small talk and chatted about how her dad got his start in construction by designing the male mannequins at a shoe store called Tootsies (not a true story) and used every possible second to not think about why we were there.  Right then, we just happened to be 5 people hanging out while one of us was in an extremely revealing and ill-fitting gown.

When it was finally game time, they wheeled her back and we followed in what was the worst parade ever.  We paused at the door to give hugs and last minute words of encouragement and she slipped away.  Watching her go and feeling utterly helpless (remember this is about me and my pain you jerk) I did the only thing that I knew would help the situation: I cried, like a lady.  I have seen enough episodes of Gray’s Anatomy and ER to know two things: 1. I could totally order a write up of lab tests and make it sound authentic and 2. These moments were always pivotal.   Now granted, no one else is at this point is crying, so now her mom things I’m a little bit nuts.  But I quickly got control of myself, made a bargain with God (I heard he responds to those first) and headed to the waiting room.

If you haven’t ever been in a surgery waiting room, you are missing out my friend! First off, most surgeries are multiple hours long.  Unlike Gray’s Anatomy, these parties don’t end in 45 mins, yet for some reason each hospital tends to forget that and just orders a few dozen chairs from the Worst Chair and Backache store and sticks them all in like a badly organized corral.  Thank goodness there is a TV stuck on the local channel.  What else could I want to focus on while wondering if my loved one is splayed open on an operating table but the latest poolside fashions from whatever random morning show still employs.

After 5 or 6 hours, you start to band together with your brothers and sisters of this surgical purgatory and relish in the shared sense of camaraderie.  We hear family stories, ignore snoring, celebrate when a good news call comes in and–what?  They just called for family of Erin Parker?  See ya suckers-we’re out!

We had received minimal updates during the day on her condition, and talked briefly to the colon rectal surgeon.  I only mention that because of how fun it is to say ‘colon rectal’ and I rarely get to do it without being swatted for being inappropriate.  When we were finally sprung from jail, we got to meet the man of the 6 hours: Dr. Mengal, Surgical Badass and Endo Destroyer.  He was incredible and spent a good 40 mins explaining all about what they did, how the Endo had affected Erin and her womb (gross) and more about her reproductive organs than I honestly ever thought I would know.  Hell, after talking to him I wanted to have it done!  He was so engaged and clearly in love with the work that he was doing that I couldn’t have been happier it was he that filleted my friend for all those hours.

For anyone that doesn’t know how Endo works (like me), its pretty incredible.  I mean, I’m not even mad-I’m impressed.  90% of women have blood that leaks back into them after their cycle (so gross) but only 15% of women lack some magical enzyme in their pelvis to fight it.  If we (like how I include myself in this too?) could find out what enzyme that is…then we can make a pill and all this would be over.  Which actually, I call bullshit.  Have you seen the size of a SIM card lately and all the data it holds?  Did you know that they can make a popsicle that is three different flavors on one stick?  The world is full of these modern miracles and a bunch of top-notch doctors can’t locate ONE enzyme?  I can apply filters to a digital picture that I took with my smart phone and post them to a virtual social infrastructure documenting a moment in time with NO physical evidence and we can’t find that little jerkface?  Thanks Obama.

Captain Cuts-A-Lot also explained that he ruled this surgery and kicked Endo’s ass.  He walked in, nodded to his partners, went all Batman on her and saved her ovary with 50% functionality, got all the rest of the Endo bastards out of there, and then went “DONE.”  Scalpel drop. He’s out. There were sections of organs that were actually being wrapped up by the Endo, and once they removed it her entire gut sack relaxed.  Erin’s colon was one of them-it was originally thought that they would have to slice and dice her poop shoot to get it all out but once they removed the mass, it just accordioned back to where it should be.  I imagine that it made a sound like a sad trombone as it went.  Or a slide whistle.  I see it happening both ways in my head. Beeeeoooowoop!

I didn’t stay to see her wake up. I figured that having 3 people hovering over her would be enough and they wouldn’t be paying attention to me at all, so what was the point?  Don’t worry, I checked on her the next day and that is where our story will continue.

Love and Hugs,
Marissa

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Laparotomy Prep

Well, we’re finally here folks. Tomorrow is the big day, so this will be my last post for a bit while I focus on recovery. I can’t believe I have already spent half of 2014 focused entirely on this endo, and there still is at least 2-3 more months to go. Blerg.

But I shall emerge a beautiful butterfly, free of endo AND a colon with her very own room! No more sharesies with my uterus.

Yesterday was clear liquid diet day. I also went to see Chef, which is a fantastic movie but sucks when you’re fasting. So, circumstances permitting…I recommend it. Because of that movie I CANNOT stop thinking about Cuban sandwiches. I’m obsessed. I walked out of the theater and immediately yelped where to find the best ones in Houston, so I can go in 2 months. Then I started looking up French cooking classes. Which led to seeing which restaurant serves the best osso buco. Then I started getting sad. I never want to do this again. Never never never.

Today I have continued the clear liquid diet and bonus!…I started my bowel prep at 5pm. It tastes like mouthfuls of Galveston water.  WHORE-IBLE. Currently it’s 9:30pm and I’m working the second bottle into my system. It does not get better the second time around.

moviprep

I put a coke can next to the bottle so you can use it as a scale. So much liquid.

I’ve already given Deb’s cell number out to people but if you don’t have it and you’re interested in updates, you can email me and I’ll send it to you.

I’m so excited about tomorrow!! I feel like this is the final summit to climb!!!! A little nervous, sure, but mostly just so freaking ready for a brand new life.

Details:

Women’s Hospital of Texas
Arrive at hospital at 5:30am, surgery scheduled for 7:30am, will be 5-6 hours
Will stay in hospital 3-4 nights depending on how I’m doing
6-8 week recovery time

Since I started these endo posts, my support network has exploded and I’ve been lucky to speak with women who have already gone through exactly what I will tomorrow. I’m worried mostly about the pain in the few days after surgery and one friend said “Yeah it sucks, but it’s nothing worse than what you’ve already been through with your endo pain.” I got this. AND I get a Dilaudid pump. Heyoooh!

Gather round children, gather round. Here are some lessons I’ve learned:

Self-love: During the past 6 months I have felt defective as a woman, lousy at being a human in general, ugly, unlovable, broken, and unworthy. These have been some dark times indeed. But…wow! What a unique opportunity for me to learn to love myself at an entirely new level. This gave me a chance to give MYSELF the love and support and gentleness that I crave at my absolute worst. I was able to show myself that even at my lowest, I am worthy of love. It’s been such a surprising and remarkable turn of events. The more love I give to myself, the more I see love and support exploding so much around me that there is excess I will never be able to absorb. I feel so grounded knowing I am worthy of it all – even at my ugliest. I’ve developed an appreciation for myself I never had before. Despite the tornado that my life has become, I’ve never felt more peaceful. This I did not expect.

Patience: I was pretty patient before, but this endo has stretched me farther than I ever wanted to go.  I’ve had to let go of pre-conceived time frames that I was hell-bent on sticking to – like thinking this whole process would take 2 months, tops, or the whole rising early vs. waking up late thing that I talked about in my last post. All of this has required so much patience with MYSELF, and letting my body go at the pace it needs to instead of my mind getting all bossy and telling my body to cut this shit out. I’m learning to listen to my body and slow down when it asks, even if I want to keep plowing ahead. I’m learning what foods my body can handle and what it can’t. I’m sleeping at bizarre hours because that’s when my body says to. All of those things have required unlimited patience, acceptance, and surrender. And it is HARD, y’all. It is really hard. I practice this daily. I have to remind myself to listen and slow down and pay attention. Because it’s so easy to ignore warning signs and get caught up in whatever we get caught up in. That sentence sucked. Whatever. I haven’t had food in two days. I’m just trying to say it’s hard.

Okay guys, imona get back to drinking mouthfuls of ocean water. Don’t be jel. I’ll also be taking along Judith, my uterus (a gift from Melissa). She’ll be making sure everything’s in order at the hospital and that the nurse gets my vein on the first try. Else she will do the punching with her long fallopian arms. Pow! Pow!

judith

Catch you on the flip side!

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