A Game Of Crohn's

Life Punches You in the Face Sometimes: or Why I Didn't Get My Second Stem-Cell Placement

2019-07-13T16:59:00.000-05:00

Long title, eh? I like that Peter Sellers shit.

Or die mad - whatever makes you happy.

So...this isn't going to be very satisfying to you, either - Dear Reader - but I have no fucking real idea as to why I didn't get my second stem-cell placement. About a week before the planned surgery, I got an ominous email from Jessica - the coordinator for the study - asking me if I would be available by phone the following day. It was ominous because we normally take care of most business by email, and her asking me for a direct phone call did not bode well. I told her that yes indeed I would and could call anytime.

I was so stunned by what she told me that I honestly cannot remember specifics. She said stuff about numbers and my not 100% stellar outcome last time, and something about the stock of the actual plugs that they would be coating with my cells being called into question (quality-wise) but bottom (ha!) line is that they cannot help me at this time.

What the actual fuck?!

I was/am fucking heartbroken. Not only was I totally ready for this surgery, but now I have to live with the Rockstar Piercing for...whenever? Forever? I've heard of patients having theirs in for over eight years. EIGHT FUCKING YEARS. Nopenopenopenopenope. This needs to be remedied. If I have to remind you, the seton was the way that they have been treating perianal abscesses since Hippocrates. If you suck at history, this is before Jesus Christ walked the fucking earth. Or water. Whatever you believe. What I do know is that Jesus Christ hasn't done a damn thing for the advancement of seton treatment, and I'm a little bitter. #thanksjesus

My psychiatrist has said that with the current political/medical climate (I will not blow my top, I will not wish death upon stupid politicians) that it's entirely likely that they lost funding for this part of the research. (If I had to take a WILD stab in the dark, is it because mouth breathers don't understand what stem-cell research is!? THESE ARE MY FUCKING STEM CELLS, HARVESTED FROM MY BELLY. Stem cells almost never come from "aborted fetuses" (just typing that makes me want to throw my computer" ...wanna know where there's a huge market for stem cells?!? YOUR PRECIOUS LITTLE BOY'S FORESKIN. STILL WANNA GET HIM CIRCUMCISED, YOU FUCKING MONSTER?!) ...I digress - Because it is a medical study, I'm not guaranteed treatment. I was just lucky the first time that I was included in the study group, even if it didn't go to plan exactly.

I'm not going to show you a picture of baby foreskin because I'm not a FUCKING MONSTER. Instead, here's a puppy with a heart-shaped nose. You're welcome

I've had several medical maladies since then (in addition to colonoscopy 8, which needs to be done yearly for a crohn's patient to check on their disease), and a lot of you know about my attempted helping of a tiny (unidentified) pinky rodent that I named Daisy that did pass away. The heat has always drained my reserves at least at a double if not triple rate, and I have just had absolutely nothing to give. I can't help but be depressed over the seemingly (now) endless chasm that I'm looking into that I will have this goddamned seton in my fucking ass, but I am really trying to be hopeful that they will quickly(ish - at the speed of government!) be able to come up with something, anything that will help me, that will heal this never ending open wound that I have been living with for literal years on end. I cannot remember the last time I went swimming, or took more than a quick bath that I didn't have to immediately clean the wound with surgery soap. I take only showers, and shaving my legs is a fucking nightmare.

It really is a problem. I miss swimming, bro.

It's not just the digestive disease. It's my mental shit that drags me down as well. I took a picture of all of my medications (included below) - the prescription ones at least, if I included all of my vitamins and over the counter medications we would need a drone shot, and I am not in possession of one of those bad boys. I took the liberty of removing all of the identifying marks, besides the actual names of the prescriptions - some help with my crohn's, some help with the constant nausea/vomiting, some are my mental drugs, some help with the migraines. Oh yeah, that reminds me that I didn't include my migraine rescue med (or either inhaler, one steroid, one albuterol) - ah well - there's enough medication there to freak you out. I'll only be 39 years old next month. I have Thursday Hurtsday every single Thursday of my life for the foreseeable future (which, for the record, is twice the amount of Humira that a "regular" patient takes - they only take it twice a month). I can see myself reducing the strength of some of these meds, but never coming off of them. These seem to be the core ones - they can increase dramatically; I don't happen to be on any (crohn's-related) steroids, or any antibiotic combinations at the moment, which is definitely fortunate.

I don't know what to say at this point. I'm in a holding pattern, and I hate it. I'm in a non-medical marijuana state. What I need people to do is get out and fucking vote. Vote for every single election, primaries, everything counts. It's bullshit that I'm a criminal, it's bullshit that I'm on so much medicine at a young age when I could come off of some of it (or severely limit it). Medical marijuana has been shown to help crohn's. So why the fuck does this draconian state still hold onto ideals that weren't even solidly proven a hundred years ago?

I'm frustrated. If you're not voting, don't let me find out about it because we're not friends. You're not "using your voice" by not voting. People are hurting because you won't take the time out of your day to be a decent citizen.

Do you know how much of this could be taken care of naturally, if I wasn't branded a fucking criminal?!

xoxoxoxxoxoxoxoxo

Jill the Medicated.

Sisyphus

2019-06-11T22:09:00.000-05:00

This blog isn’t only to talk about *just* my crohn’s. It’s to deal with my mental issues as well, and I’ve been having a doozy.

Except...y'know, my hair is multicolored. But you get the idea.

First of all, as many of you know - I’ve moved. This is a positive, but still a strain, a getting used to. Everything has been going along swimmingly, and I’m finding myself quite comfortable and most importantly supported.

Then I get some hits in the gut. I’ve been dealing with a financial blow that I’m still working on. I had some terrible news where it came to my surgery (it’s been canceled, but I’m not ready to talk about it). I still have my colonoscopy coming up this month (hooray!) Then I get a familial 1-2 punch in the jaw that I was not expecting, and am having an incredibly hard time dealing with.

I realize that my family loves me, but I don’t think that negates my black sheep status. When I find out even more have this...astonishing opinion on me, it’s beyond hurtful and I’m having trouble absorbing it/coming to terms with it. I realize it’s fresh, and things with eventually smooth out, but they lost an ally forever. With their intolerance while begging for tolerance just...shut me down completely.

Apologies are hollow at this point and will be felt to be coerced. I’m not interested. Learn your lesson about burning one of your biggest allies.

The Symptoms Game

2019-05-20T18:27:00.001-05:00

One of my favorite games to play with several immune diseases is “what the fuck is wrong with me today?”

Every single day of my life.

I haven’t been able to drag my ass around for three days, and when I actually attempted to do something today, I immediately vomited after climbing the stairs. This might shock some people, but for me it’s somewhat in the realm of commonality. It’s so “normal” for me that I take a medication that people take for heartburn (strangely, it really does help with cutting back on the upchucks, even though I don’t really have an issue with heartburn or indigestion), and I have *another* “rescue” medication that I’m sure a lot of people are familiar with if you’ve pushed out a child or if you’ve been given some heavy pain meds at the hospital - Zofran. Normal patients get it a handful of times in their lives - I have a regular prescription for it, and the bottle is literally sitting about six inches away. I even have multiple forms of the pill (some melt under your tongue, some to swallow if you can tolerate it, etc.)

I know a good part of me not having energy is not eating properly, but eating is a constant struggle for

me. It may taste good, look good, but I can't eat it because of the nausea. Which is where the pills do

help, but they can't always overcome. We do our best.

Can Confirm.

I get plenty of sleep, but I put about an hour into doing not much, and I have to go back to bed. It’s not being lazy. It is I have absolutely no reserves. Nothing. My system just laughs off coffee - always has - and I refuse to take any sort of upper-type pill because I absolutely *loathe* feeling jittery. Coffee, tea, and the occasional soda is the sum-total of my caffeine intake.

I just took a shower, thinking that just the cleanliness and the fresh clothes would make me feel a little

more awake, but no. I DO feel better, but that pretty much sapped what I have left. My inclination here

is to put on makeup, because when I paint fun looks on my eyes I always feel better, but I’m not really

depressed, I just am past E, the light is on, and I am praying that I make it to the next filling station

because there’s no way that I could make that walk.

The day was not totally wasted - I should mention - I did do some computer work and got some ducks in

a row, but physically I was shot through. Thankfully the wonderful boyfriend told me that he would be

bringing home a pizza tonight, but it’s also one of his late nights, so It will be a bit before I see him.

This is a bit of a stream-of-consciousness blog, but just one to let you kinda know what I go through with

the absolute fatigue. I have no idea how someone with my condition with little ones could make it on these

completely depleted days, and I hope for their sakes that they have completely understanding help.

Humbled. Sniffling. Grateful.

2019-05-18T11:27:00.000-05:00

Every time I go to Rochester it costs me a significant chunk of change, no matter how I cut it. If I stay in a hotel, if I make multiple trips in several days - however I do it it - inevitably costs money. Money I don't have because I have my check budgeted to the penny every single month. My bills are paid, I have my few luxuries (not really many though - I can't help but think of how many cups of coffee that I could be spending it on instead). But, I digress. The point is is that Rochester is expensive. It's a three hour drive there, and if I stay in a hotel, it's three hours back. And if there's an appointment the next day - which there usually is - I get to make that six hour trip again.

Dolla dolla billa y'all. To put in my gas tank.

Within minutes of me posting my second stem cell research update on Friday, a family member had taken care of a hotel room for me on surgery night so I didn't have to drive nine hours on a freshly cut upon bum. In and of itself that deserves thanks that can never be repaid, but how to you say thank you for something like that? I immediately started crying and just counted all the ways that I am grateful, blessed, and loved ever so much by so many. #alwaysfamily

People love me. They really, really love me!

This particular hotel is attached to the Mayo complex, and is very easily accessible through the subway system. Even if I don't have anyone with me - which can totally be done at this point - the staff there do have transportation people whose sole job is to move patients about the hospital. I've had quite the interesting conversations with a lot of these individuals. They're fun. For some reason I can't ever get them to race me with other people in wheelchairs, so that is a bummer.

The problem here is that I will not be able to drive to get food for dinner after my surgery because of the lingering drugs in my system. There is a restaurant in the hotel if I'm not mistaken, but if memory serves, it's hella expensive and I wasn't all that interested in a $17 cheeseburger. If I can get something decent and not wallet-breaking I'd like to get something else, but I'm not exactly sure what they have there. (A sub? Chinese food? Anything? Does Taco Bell deliver??)

I will also need the dreaded change for the vending machines, because you know those terrible things never ever take dollar bills, and I'm going to need a minimum of two Cherry Cokes if I'm going to have to be forced to go through all this crap-ola.

I can function with this. I'll still need coffee.

Oops - and I almost forgot about parking! You can't park in Rochester without getting charged for it. It's like living in Pittsburgh or Minneapolis again. It's an insane pain in the taint.

Meds should be covered, but you obviously never know until they start writing them out what they're going to give you. That's always a ton of fun as well.

All of this is to say that I have been asked several times since posting yesterday if I have a PayPal account (I do) and to post said information.

I'm more than humbled. I don't know how to say thank you except to just say it.

Thank you, thank you, thank you. You make this hospital journey so much easier on me.

xoxoxoxoxoxoxoxoxoxoxo

PayPal Link: paypal.me/grharden

Thank you again. I have the best, most generous people in my life.

Stem Cell Transplant Numero Dos

2019-05-17T04:46:00.000-05:00

Back in December when they told me that I was on my way to Eau Claire to have an emergency surgery on a new abscess, I knew this day would eventually come.

I’m beyond *thankful* that this day would come.

When I did my first stem cell transplant - from stem cells grown from my own belly fat! - I was one of 28 subjects that signed up to put themselves through a serious, 2-year commitment (possibly lifetime, if you’re down with it) to be humiliated in ways that you haven’t even imagined. I’ve had my behind taken pictures of like it was Lady Gaga - I’m not kidding. HUGE paparazzi type cameras, that have the added bonus of popping up *immediately* on the computer screen which I can see clearly.

SMILE! You haven't learned to smile with that muscle yet?! C'mon!!

I’m not sure many humans are quite so aware of what that part of their anatomy looks like - in multiple forms of healing, mind you - as much as I do. And if they do, I don’t really think I want to hear about it. Thanks.

So anyway - they indeed placed another seton (if you’re not aware what that is, go back and read my damn blog! Or look it up, lazy ass, educate yourself!), and when I went to Rochester to have the EUA (Exam Under Anaesthesia) they ended up finding *another* damn abscess - luckily right along side of the one that is currently existing, so they were able to essentially drain it and things were hunky dory.

Seton. Small size.

Until I couldn’t move the next day, but I digress.

The surgeon determined that both I am healthy enough to withstand trial #2, and that my stem cells are both still on file (which I knew) and that they are indeed viable.

And then here comes the super fun parts.

When you have crohn’s disease, a yearly colonoscopy (or more) is almost as regular as blood work or hell, even breathing. When they tell you it’s time, you just...deal. I have a huge sense of humor about the whole thing and love picking out the newbies when I’m in the waiting room for mine (if I’m not too hangry). I am unfortunately overdue for my checkup this year (I don’t know how my team missed this, they’re dropping the scope on this one!), but the first date that they had open was - NO SHIT - the Friday before my stem cell transplant.

Are. You. Kidding. Me.

I don’t know what happens to me when I’m under sedation, but I wake up every time with every muscle in my body aching like I’ve never experienced in my life. I’ve been told before that I fought with everything that I had, and that they had to give me a significant amount of anaesthesia to knock me out, but this happens all the time. I’m going to spend days in excruciating pain, on top of the pain that I already experience.

But this time, I’m one of ten. There are only TEN participants in this phase of the study.

Brought to you by the number ten. Also the Count.

I don’t even know how to handle that. I’m so thankful that no matter how crappy I feel every single day, that I *know* that there are crohn’s patients that are so incredibly far worse off than I am, and that if anything that I’m doing will help them in any way, I’m so happy that I’m strong enough to be doing this. I don’t know if I’ll make any sort of drop in this ocean, but if I can help just one person, I did what I set out to do.

I don’t want to get off on a tangent here, but I cannot ever donate blood because of me being a stem cell transplant patient (even though they are my own) and all of the different prescriptions that I’m on, and if by being a test patient kind of balances that out I feel better. I have another plan for later, which my family and close ones are aware of, but I don’t feel I should really bring it up until I have ink on paper, and it’s not just a pipe dream y’know?

So the stem cell research date is set for Monday June 24 (colonoscopfun the Friday before) and then I need to go back the day after - the 25th - for an immediate check-up with my Rochester gastroenterologist. I can’t afford a hotel, so that means 12 hours of driving in two days, 9 of it on a freshly operated-on bum. I have no idea how I’m going to do all of this.

Send halp.

Fuck crohns.

It's Alive! Alllllllliiiiiiiiiiiiiiiiiiiiiiiiiveeeeeeeeeeeee!!!!!!!!!!!

2019-02-18T23:37:00.000-06:00

I know. I know. It’s been an eternity.

Back in December, my health took a left turn into ShitTown, as it likes to do, and I ended up with another surgery. With more complications. And that’s just crohn’s.

After I got home, I had an incident around the tail end of the year (I would rather not discuss it at the moment, obviously I’m alive and kicking, but it will all be part of a long - ass description, and I don’t know exactly the outcome yet.)

I don’t know the outcome for either incident.

I would imagine that I would have stem cell surgery all over again for my surgery in December. That is 100% speculation on my part, although I absolutely will see my Rochester team here soon.

I have three tests pending that I cannot get done. Every time that I have one scheduled, it’s -58 below zero, or there’s 3 feet of snow on the ground (twice). HOPEFULLY I’ll be taking care of that this week.

Because it needs to be done. I need to work out what the fuck is going on with my body, because something is not normal, and it has nothing to do with crohn’s disease.

In the meantime, I’m trying to take it as easy as possible - because...you’ll understand why that’s a good idea. You see me post on facebook, so you know I’m alive, but I know you want blogs. I need to get better about blogs.

I’ll do my best.

Jill

xoxoxo

An Open Letter to My Former Roommate

2018-08-30T04:44:00.000-05:00

Just to give you some background, he moved out in the month of August, and he took his sweet time doing it. He promised me that he would clean the apartment (he did not), he promised that he would leave me furniture (it's junk, and mentioned below), and I thought that he was a good friend. I did nothing but bend over backwards to make sure that he had a safe, loving space for his two children, and this is my repayment. Any time I talk to him on the phone, he gets butthurt, asking if we're going to be friends (I'm kind of monosyllabic, I can't help it), and I just wanted him gone. This finally happened, but there were many issues, which I felt like I needed to write a letter about. I don't know if I'll ever give it to him, but there is a catharsis is writing it (and letting all of you read it).

I should also note that because of the way that my apartment is designed, I was left with absolutely no furniture, and only because of my sister Jen and Benana am I able to have something to sit on. My blank walls are bothering me a lot, but I suppose one thing at a time.

Dear P;

You seemed so concerned vocally that we’re not going to be friends anymore, but I can’t help but wonder if someone is around you when you express this. I will admit - once again - that I felt that helping you was paying back some of the karma that people had paid unto me and I was unable to pay back.

I think you more than took advantage of this situation. It’s my fault, because I let it continue.

I’m not going to deny that you helped in your way - you would go to the food bank, you would cook and clean, but you HAD to cook and clean while your children were there, because I was not going to be be cleaning up after your family, and this was made very clear from the beginning, and for the most part, I didn’t have a problem with how you kept the house.

When you had me sign a piece of paper for a paltry $10, I think it’s time to lay out some things for you, just so you have VERY clear numbers in front of you.

Rent plus trash every month is $470.15, and half of that would be $235.00.

Minimum charge for a phone line would be $45, but in actuality it was higher several months due to internet overages.

Utilities varied wildly - sometimes $80 a month ($40 halved), and sometimes it was $150 or more in winter months ($75+)

Internet is at least $70 a month - $35

Channels for entertainment (which the children use) $44, $22

I was asked to get a special educational app set on my Kindle that was going to paid for by you for Eli - I did not see a dime from you for 6 months - I paid for it the entire time until I got sick of it and Amazon finally just deleted his profile.

Despite never having money, I smell alcohol on your breath or find it in the freezer. If you were paying monthly bills, *not including food whatsoever*, would be around (utilities figured at $55) $392.00. Now, since December 2016 until July 2018 is 18 months which rings in at $7,056.

THIS DOES NOT INCLUDE the fact that you *never* gave me the full amount of money even when you worked at FG. Not ever. I covered you.I covered you the entire time that you lived in my apartment. How often did you hear me bitch about it?

You almost never gave me the proper amount of money to go to Couderay/Winter and back (104 miles round trip) - every single week to pick up or drop off your children. WIth gas being nearly $3 a gallon, and I get approximately 26 mpg, and you put $7 in….does not compute, Mang.

Don’t’ misunderstand me. I’m not asking for every single dime of this back. But when you get angry with me when I’m just asking questions, it brings me to a boil instantly. You "left" things for me, but it’s essentially junk. The table in the kitchen is great and all, but it’s not an actual kitchen table, and an actual one must be procured, because that’s a card table. The dresser you left leaves much to be desired (there’s nothing in it, yet I can barely open the drawers, which tells me that you thought it was junk as well), and the clear plastic Sterilite 3 drawer thing is absolutely laughable. What the hell am I supposed to do with that? I have some art supplies in there right now, but it’s so wrecked, that it’s not even usable.

Get your mail forwarded if you haven’t already. I’m not dealing with it. You can get a packet at the post office, or you can do it online for a dollar.

I don’t appreciate you taking away the box fans. I don’t care if a parishioner bought them for you. I bought the original two for you and your children. YOU broke one, and because you put everything down in the garage (which was NOT ours to use!), I feel it was your fault that it was stolen. When you were given two this spring, you could have given me one of those, but you didn’t. You were greedy, even though I had spend my money on the original two on you and your children. This was rude and it hurt.

There was no food in the cupboard or refrigerator - just some chicken thing that was way out of date, shitty condiments, flat soda, and my medicine. I couldn’t believe you, when I actually looked at the food. I’m confident that you would have kept packing that night. You took all the food off the shelf. You say I won’t eat it, but you don’t know what I’ll eat when I’m STARVING, P. Thank you again.

I don’t appreciate you taking all of my towels. There are three towels here that are mine, and it has only little to do with the missing beach towel - which you replaced with a thin, holy beach towel. None of those are mine. I had at least one white towel with green embroidery, I had more than one dark blue towel (which I now have a single one), and I don’t know where you put the oven mitt that you said that you took off with, but I haven’t seen it yet. All of the towels you replaced are thin and holy, and not in the way you are.

What I really don’t appreciate, here, is that you’ve removed a trust that I had. I’ve had my shit stolen from me before, but it’s usually been family, and I could write it off due to their life at the time (Jen’s just had a baby or I left that bucket behind that the boys can use for toys, whatever). But you did absolutely NOTHING that you promised, and I no longer want anyone to live with me. No one. Not even a partner at this point. I don’t care what hardships I have to endure to live entirely by myself, but I’ve done it before and been fine. It seems that you took every opportunity to take advantage of me. You didn’t have money to give me but you had alcohol on your breath. You would spend it on frivolous things instead of helping me, and I have lost a fundamental trust in the human race because of this. Did you lose a friend? Maybe. I haven’t decided yet. I’m going to miss your kids like crazy, but you’re toxic, and their mother is ten times more so. RIght now I’m not interested in seeing you. As my sister says, “See you in six months for coffee, and then we’ll see.”

I can’t do it. I’m glad you’re gone. Please stay gone for a while. I can't handle you.

Another (!!!!!!!!!!!!) Rockstar Piercing Story

2018-04-03T19:40:00.001-05:00

Never in a billion years did I think that I would be writing another Rockstar Piercing blog post. Which should have been my first indicator that my hubris would be punished. So now there could be endless Rockstar Piercing blog posts! Who knows?!

If you’re new and need to catch up, I’ll help you out and link you: Part 1, Part 2, and Part 3 ...mostly because I am lazy and I do not want to explain what a Rockstar Piercing is again.

Suckers! I put the picture in here anyway! If I have to live it, you can look at it. LOOK AT IT AND KNOW MY SHAME!

So, if we’ve all been paying attention, since the stem-cell placement I have had an open tract that has stayed open despite attempts to treat it, mostly using silver nitrate (literally burning my ass with chemical matchsticks every other week). My Rochester surgery/gastroenterology team has watched it via MRI and nothing has changed. They’ve also checked me with another colonoscopy (yay!) and added another medication.

Featured: Hell Sticks

It’s been decided that they need to look at me under anesthesia on April 17th (which is the first step in the process, anyway, but minus the belly fat biopsy because they already have my stem cells on file, growing tiny Jill's down in the lab) and they would like to do it ASAP - and if they find a through tract (a hole on either end) they’re going to place a seton - the dreaded Rockstar Piercing.

Can you see how a person wearing one of these feels...less than? I was about to say that this was about to get TMI, but the whole damn blog is TMI, so here goes: You do not feel sexy when you have a rubber band loop sticking out of your asshole.

There. I said it.

I had one in there for a long time, and I’m *just* starting to feel like a normal woman again, like I can start my crazy dating life again, and they might want to place another seton.

Seriously?

I don’t quite feel 100% anyway, because I’ve been wearing some type of pad - every single day - since June of 2015. Every. Single. Day. Do you know what that means? Diaper rash. No matter what you do - it happens.

She knows. Diaper rash is the frigging *worst*.

So fucking sexy, right?!?

So the pads don’t go away regardless, until they figure out the Foam version of the stem cell research (coming later this year? next year?)

I shouldn't complain. I shouldn't complain at all. I signed up for this. I’m on the healthy end of the crohn’s spectrum. Some parts of it are so mentally heavy to carry, though. I don’t know if they considered that? I think that they may have, because I'm on a low dose of anti-depressants, but a high dose of mood stabilizers and was warned last year before the first stem cell surgery that I was facing a likely rough and bumpy road ahead and to NOT stop taking them while I'm going through this. I know all the big pharma haters, but it makes me very zen (read: zombie) like about a lot of things, and that's really a positive. I don't need to be the super-fiery individual that I was 24/7. She still comes out when she needs to, but I'm looking towards healing, and quiet, and learning about me and others.

Talking about sex and feeling like not much of a sexual being is very awkward, knowing that my family reads my blog, but I'm officially a woman. I think I can manage this tastefully. It's kind of funny that a tiny piece of rubber will completely shut down my libido. Not interested at all. And even if I was, nothing would be happening in the front regions, and it would be a big mess. I can't fathom the embarrassment of having a partner exclaim something to the effect of "What the hell is this blue loop hanging out of your asshole?!?"

And there would be where I died of embarrassment.

And years of backed-up farts would be leaking out for eternity!

However - without getting into too much detail, my sex life is unlike a good portion of the "normal" society. I can be fully dressed for weeks on end and be just peachy with that. Sex doesn't always mean penetration; at least I don't think so.

Anyway - sorry that the blog took a PG-13 rant there, but it's important to realize that I was celibate for two years because of my crippling self-consciousness about that damn seton. And I'm terrified that they're going to do it again, when Jill is just getting her groove back! (Slowly but surely, have men collectively lost IQ points in the past few years?) I realize that dating is just going to get more difficult as I get older, but *damn*. This is some slim pickings, and there are a lot of troll-looking men, lots of horrible shots from under (so you can see the double or triple chin), dirty men (do they think that they're impressing women because they're working men? Because I'm going to paraphrase Tiffany Haddish, my black unicorn, if you're dirty, you've got a dirty dick. Showers are key. I think this might have turned R now?

The point of the blog post is that I do and I don't want this seton stitch. I want to find out what the hell is wrong with me and why I'm not healing, and if it's because it's an open tract, well - we have our answer, Johnny!! If there's not a complete fistula (boring completely through to the other side) I have a lot of questions for my medical team and I need to find out their game plan for getting me healed. If they think I'm going to be eligible for the trial coming up at the end of this year? next year? where they take your stem cells and make foam from them (how cool is that shit?!?) and they'll be (theoretically/likely) to treat it with that. But the waiting and the back and forth, and dealing with doctors in different states, all with their own opinions, it can get frustrating.

OK, you've had enough stream of consciousness Jill babbling for a while. I'd like to try something new, if you guys are up to it. Would you like to ask me questions about what's going on? Or what crohns is like for me? Or whatever poop related question you have? (You will not embarrass me, and I will keep you anonymous!) I'd love for this to start being a little more interactive, start engaging you guys a bit more. If you liked that historical thing I did, I could do that again - just ideas I'm batting around! Let me know! Please email me at inkygirl2020@gmail.com

xoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxxoxoxoxoxoxoxoxxoxoxoxoxoxxo

Colonosco-Nightmare

2018-01-23T21:03:00.000-06:00

Sooooooooooooooooooooooooooooooooooooooooooooooooooooooooooo….

I’ve been sitting on (hahahahaha butt jokes) a version of this post for some time. I’ve gone through a nice little run-through of all the emotions in the past four months, thus my blog silence. I’ve also been writing elsewhere, and no, you can’t read it (yet).

A friend of mine nailed it on the head, first guess - I’m looking at you, Kelly - but I’m not going to talk about it and that delay - it’s totally not worth the blog space. Not even close.

Instead, we’re going to go over the fact that January 24th marks my SIXTH colonoscopy. Stop and absorb that.

1 2 3 4 5 SIXTH. FRIGGING. COLONOSCOPY. I’m 37, y’all. I do not want to hear ANYONE complaining about getting one. GET IT DONE.

The reason for this one (other than the fact that crohn’s patients usually average a colonoscopy a year, and I didn’t get one done last year - score) is to check for active disease, because things have been...well, acting up. Despite me taking double the amount of Humira (normally one would take it every other week - I take a shot in the belly every week) I’m still having...symptoms. (Anyone with any kind of irritable bowel disease hates saying the word “flare”.) My Rochester GI doc wants to try another prescription (!!) that is supposed to bind with excess stomach acid and therefore reduce symptoms, but another prescription. I take too many as it is now, and I’m trying to come off of the ones that I don’t need anymore! Ugh.

The Rochester GI doc wasn’t very clear - he wrote on my instructions colonoscopy or MR enterogrophy, and in my online instructions he wrote for both. I’m not quite sure why, but I’ll ask my Northland GI doc on the 24th. If I need both I need both, but if I can save myself a trip to Eau Claire, I’m going to.

Back to the colonoscopy for a minute. Seriously, guys - the worst thing about a colonoscopy is the preparation. They sedate you, heavily, for the procedure itself, and you usually don’t remember much - if anything. I recommend scheduling your procedure for as early as you can in the morning, because that cuts short the amount of time that you have to go without eating. Also, you will need a driver, so tell your driver that you will be stopping somewhere to eat or else they will be losing an appendage.

Now - they (Rochester) needs these results to see wtf is going on before they can carry on with any sort of stem cell research. Also, the open wound that I have (the first surgery worked, sort of, it’s just morphed the wound into a blind tract) doesn’t necessarily lend itself to the same surgery that I had, BUT there is a new stem cell surgery that is coming up next year that will turn the cells into some kind of foam. Which is crazy, but I would be a perfect candidate for that surgery. I have to say that again. They would turn my stem cells into foam. What?!? Hallelujah science!

Because I do still have an open wound. Since June of 2015. It wears on a person.

Horrific Historical Treatments of Hemorrhoids

2017-08-07T17:17:00.000-05:00

I don’t need to warn you that this post is about to be real, not with “Horrific” in the title, do I?

We'll break out the caution tape, just in case

I’m really thankful that I live in today’s medical environment, because as terrible as some things may be right now, they were downright horrific. And not all that long ago, really.

Lobotomies may have fallen out of favor in the 1950s, but that doesn’t mean that there weren’t 40,000 of those “procedures” performed, and from what I can collect without anaesthesia. Do you know how a lobotomy is executed? Essentially an ice pick is stuck through your eye socket, and your frontal cortex is “scrambled”. But I’ll do a whole different blog post about what they did to people with mental problems in the future.

Before I begin, let’s just take a look at an old hypodermic needle. The syringe as we know it was essentially created by Dr. Alexander Wood in the 19th century. I’m not sure on the dates of when these were actually used, but take a good look at them:

Oh...Oh my...

Gods, NOOOOOOOO!!!

Holy hypodermic needle, Batman. Do you see how large those needles are? Let’s *completely* eliminate what we know about bloodborne pathogens and contamination of others through needle sharing. Imagine a doctor sticking that *cannon* into your vein.

I’ve had a LOT of bloodwork done, tons of IV’s, just...all kinds of needles (including tattoo needles!), and looking at those massive things makes me want to pass out. And totally sympathetic to the people who *did* pass out. I used to have a needle fear, but it’s so far gone, I can’t really remember being afraid of them. When I look at those, though, they make me shudder in fear.

It’s more real when it’s up close. A lot of hospitals will have displays of their old tools, or old nurse’s uniforms, etc. It’s a lot more horrific when you’re actually looking down the barrel of one of those bad boys. It’s forever in there.

So hallelujah for modern medicine, yes? I’m a fan.

Do you have hemorrhoids? Yes, you do! Everyone does! It’s a trifecta of muscles around the anus, but it’s when they become swollen (kinda like vericose veins, but in your bum), and thrombosed (filled with a blood clot) that they become a real problem. I had mine from hours upon hours of sitting on the toilet (which is not a healthy way to sit and actually makes the problem much worse, but I didn’t know why I had constant diarrhea), and they were *bad*. I knew I had external ones, and I was pretty sure I had internal ones as well. My regular doc sent me to the surgeon, and sure enough - I had both, and both should be removed (people with crohn’s should have as *little* surgery on their rectum as possible, as to not affect their continence, but surgeries happen). He scheduled surgery for the external ones, and told me that the internal ones could be banded in an in-office procedure.

This (banding) has - not surprisingly - been a treatment for hemorrhoids since Hippocrates. Remember him? He’s like...the father of modern medicine. And remember my Rockstar Piercing? Or Part 2? Or even Part 3?? It was all about a seton (or seton stitch), which has been the treatment for rectal fistulas since the man himself had created that treatment as well.

My treatment was older than Jesus Christ. Jesus. Christ.

The dude lacking irises is Hippocrates. The other is really Jesus. Really.

He also had quite the interest in hemorrhoids, and wrote about them extensively. If you were a sufferer under his care (or a direct student of his), they would hold you down and cauterize (BURN), your rectal tissue with hot pokers - causing you to cry out, and push out more tissue - so he could burn more.

Yowie yowch.

Is...is that guy smiling? Cause that looks horrific. I'm not smiling.

As I mentioned above, he also “banded” the hemorrhoids. He would tie a piece of string around the extraneous tissue, cinching it off, and causing it to wither and die.

Still the treatment today, although I heard that some doctors are refusing to do it, as it’s painful as hell (I sobbed in the bathroom bleeding for a good twenty minutes before I came back to my examination room). He only used this method for my internal piles, but there were three of them. It was intense pain, as was the later (outer) hemorrhoid surgery.

You never think about how much you instinctively flex your rectal muscles until you’ve had them cut. Someone cuts you off in traffic? You flex. Something comes flying at your face? You flex. Using your core to get out of bed? You flex. I’m not even going to bring up shitting. You don’t want to know.

Don't. Wanna. Know.

This didn’t get any better at any point in time. For a long period, it was believed that if you did not pray to the correct saint - in this case being St. Fiacre, patron saint of gardeners and hemorrhoid sufferers (and also apparently fistulas and infertility, amongst a list of other things) - you would end up with said medical issue.

There were two treatments. You could sit on the rock that famously cured St. Fiacre of his hemorrhoids, or you could, y’know, just keep burning them out with red-hot pokers.

At least this guy looks properly terrified...

And...they’re still kinda doing that, too. My silver nitrate treatments are chemically burning my rectal tissue. There’s a tract there that won’t heal, so theoretically if they burn it every other week, it will eventually fuse together. Which I already talked about in this blog post.

So the stem-cell treatment I did was the first real improvement we’ve had since friggin’ Hippocrates. Of course, with modern medicine, a lot of rectal issues are just dealt with under anaesthesia, which is fabulous. You don’t wake up feeling fabulous, but at least you didn’t have people holding you down while another stuck a hot poker up your anus.

I hate to say it like this, but I might have rather died than had hemorrhoids back then. Because fuck that. I was not meant to live in the past.

AGAIN WITH THE FACE!

xoxoxoxoxoxoxoxoxoxo

A Mortician's Motivation

2017-07-14T20:17:00.000-05:00

I don’t mean to brag, y’all, but I am totally in love.

With a mortician. That I see on YouTube. So it’s kind of a one-sided thing at this point.

It'll remain one-sided. S'ok.

*Swoon*

Her name is Caitlin Doughty. She’s amazeballs. I’m in love with pretty much every aspect of her that I’ve seen. I agree with her stand on green burials. She’s educated me on so much, and changed my mind about a lot of things that have to do with the funeral industry (and it is - very much - an industry that is milking you for billions, with a B, each year). I mean, why wouldn’t I want to wash the body of my mother after (God forbid) she passes? How many times has she washed MY body? Why would I want to leave her in the hands of strangers? All fantastic questions that I had never thought of until I watched her channel.

But I’m not here to debate any of that with anyone. It’s personal choice, but she makes brilliant points. (I’ll link to her YouTube channel at the bottom, as well as her website.)

She wrote an article that I’m sure was extraordinarily touchy/difficult to write. I realize that her business is death, and death includes everyone, from the elderly to ones that never got a chance to take their own breath. I knew that the article would be difficult for me to read, but I got through it, and she has inspired me. She was the partial inspiration/motivation for my last blog post. Not only to bring my daughter out of the dark, but to help others talk about their hidden sons and daughters, to go ahead and grieve, because it’s okay.

I’ve always felt a calling to help people. You might find that surprising, as I’m so anti-social, but when I help someone else, it does something for me. You can call my motivations selfish if you wish, but I’m ultimately trying to do the best thing possible.

I’ve always wanted to attend births. I have attended them in the past, and while it was kind of shocking what they *don’t* prepare you for, once you get over that, there’s not much that scares me off. Except one thing, and I’ll get to that in just a second.

I’ve thought that I could be of most help as a midwife or a doula. A doula would allow me to spend 100% of my time focusing on my *one* client, and allow for her to (hopefully) have the smoothest birth that is possible. I’m not entirely sure what needs to happen for me to get this ball rolling, but I do have internet savvy, and I’ve read a bit about what I need to start.

My biggest fear is - of course - losing a baby. I’m trying to console myself with facts (infant mortality rate is down!), and also drawing strength from Caitlin’s article, I think that when I lose a baby, I will just have to grieve. My mom assures me that if I take nursing classes that they will cover grieving and comforting someone who is grieving. The class requirement list I have in my hand doesn’t mention that, but maybe that comes later.

I like the thought of being a nurse, as I’ve had some great nurses in my life. Being a nurse wouldn’t necessarily allow me to be with just my one patient, though. I’m not sure exactly where this path will lead, but I’m starting to explore it. I’ve been a patient for a long, long time, so hopefully that will give me some serious empathy.

I’ve also thought about going the opposite of obstetrics and going into geriatrics. After all, we have an awful lot of gray baby boomers, and they’re going to need care.

With that option, I know that 100% of my patients will be shuffling off their mortal coil. Somehow - even knowing that I will absolutely get attached - geriatrics might be something that is slightly easier for me to handle. And knowing what (little) I know about what Caitlin and the Order of the Good Death has taught me so far, maybe I can help make their last days a touch sunnier with a smiling face, and help their families from getting ripped off when the time does come.

We are all dying, after all. From the second we filled our lungs with oxygen, that clock started ticking. Let’s try to accept it with less fear and more knowledge - the more you know about what’s going to happen, the less you sit there and fill your head with what-ifs. You’ll have actual facts to replace that, and - to me at least - it’s so much more comforting.

Caitlin is a great face to hear these facts from, at least in my opinion. Which is why I *had* to tell you about her.

Ask A Mortician (YouTube)

The Order of the Good Death

Facebook

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My Daughter's Gift

2017-07-06T14:14:00.000-05:00

I knew that she was a girl. I didn’t need a doctor to tell me, I could hear her voice. She already had a name, Lila Grace, named - in part - after her amazing cousin, Grace Ann.

And I knew, the second I saw a pink spot of blood, that I had lost her.

Just writing that sentence, even now, even six years later, brings me to tears. I don’t know what kind of mother I would have been to little Lila, being that I went through my own mini hell in the past six years. I don’t know why she was taken from me, but I’ve been through the whole list - her body was broken, her father and I aren’t together anymore and what kind of life would that have been for her?, something wasn’t right, *I* am not the best genetic contributor, etc, etc, ad nauseum. It’s pointless to wonder and to beat myself up, but guess what? I do it endlessly. It’s my fault and I killed my baby. With crohn’s.

That was my daughter’s gift. Awareness.

It's about to get real, y'all.

I knew that whatever had caused me to miscarry was also making me sick before/during the pregnancy (not the pregnancy itself). I was shitting entire toilet bowls *full* of blood. Full of purple blood. Not a little trickle of blood, not spots on the paper. I could not see the porcelain. I would go to urinate, and instead shit gouts of blood. I told my doctor about it. “It’s normal for pregnant women to have hemorrhoids, don’t worry about it,” and at the time, I *did* have external hemorrhoids, which he blamed for all of that. I told him that I didn’t think he was right, and he told me that a little blood always looks like a lot, yadda yadda yadda.

I should have screamed in his face. I should have went to someone else. I should have made my voice be heard.

But I didn’t.

I don’t think that this would have saved my daughter - not for a second. I was counting fourteen weeks, and an ultrasound technician was measuring me at six...she was severely undergrown even at the time, because I was shitting out all of the nutrients to feed her. I was really confused then, but I now know what was going on. Untreated (at the time, undiagnosed) crohn’s disease can and will lead to the miscarriage of a baby due to several reasons, the main one being starvation. I don’t have the nutrients to keep my hair in, let alone grow an entire human. Ladies with crohn’s *do* have babies, but they are also likely aware of their crohn’s and have it under some kind of control.

I didn’t know I had it, but I knew something was drastically wrong with me.

After I lost her, I didn’t shut up. I kept pressing my doctor to check what was wrong with me. The first doctor I had in Minnesota was a fatty-hater, and every single thing that was wrong with me was because I was fat. Have the flu? Walk it out! Strep throat? Get on the treadmill, chubbs! I ditched him quickly, after I realized he commented on my weight when I came to him to diagnose what ended up being athlete’s foot. Fucking seriously!??! What the fuck does my weight have to do with that?! Later, dude.

I went to an amazingly wonderful Indian woman with a lovely lilting accent who was absolutely fabulous with me. Maybe it’s because she was a woman, I don’t know. I haven’t honestly had the best luck with women doctors, up until her. Then I had a string of them. First, she was concerned about my bottom, because the hemorrhoids did not look good to her. That was her first red flag, not my damn belly fat.

Then I brought up the fact that I had constant diarrhea and what had happened with my miscarriage. I had always blamed it on the fact that I was “lactose intolerant” although I rarely ate anything with lactose IN it (cheese doesn’t, wOOt!). I also brought up the fact that I went #2 as much as #1. Maybe more so. It woke me up in the middle of the night. That didn’t happen to other people? No? Oh.

Oh shit.

Not. Good.

So that’s when I first talked to a gastroenterologist. We thought for a while that I may have ulcerative colitis, but nope - crohn’s. The effect is more or less the same to sufferers. Of course I have to read everything about everything, so when I found this out and the connections to miscarriages, I was surprised and not surprised, simultaneously.

That path has lead me to leaving behind a Mayo Clinic legacy. My daughter’s gift? Awareness, and a voice. I had my voice before, but I wasn’t speaking for anything. Now I’m speaking for the hollow spot inside of me, where my daughter is. As most of you know, I will not be having any natural children, as I chose to have a hysterectomy (for a variety of reasons). I will keep that hollow spot inside of me.

But that doesn’t mean that there aren’t women to speak for. And speak with. I can’t tell you how many times I’ve cried with others over lost babies. And how many times I will likely cry in the future.

When I lost her, the wonderful nurse gave me a grieving packet. I’m really glad she did, because my grieving network - frankly - sucked ass when I lost her. No one knows what to do when someone has a miscarriage. I’ve heard this (mainly from effing men) many times, but many people don’t think that it’s a baby until it’s sucked oxygen. Let me make a public statement to all of you unfeeling fucks: a wanted pregnancy - especially when you’ve been told that you’ll never have natural children - when it’s lost, it’s as devastating as any other death. At least to the mother. I try not to speak ill of Lila’s father, but his grief was not evident to me in any way, nor was he very comforting to me. He must have been dealing in his own way, or not dealing, or however he handled it (or didn’t). I’ve never really spoken with him about it, because a) it’s pointless now and b) I have residual anger towards him in this area where I don’t have anger elsewhere, and I don’t think that the healthiest reunion would be me spitting venom about how he treated his former wife after a miscarriage. It serves no purpose.

Anyway - tucked away in that grieving packet, amongst fliers to give to the father, the grandparents, the siblings, and an extensive one for the mother, there was a tiny, sealed white envelope. Inside, a tiny card. Written on the front, in purple ink “A Special Memory”, and inside the card, adorned with a little purple ribbon, was a baby-sized gold ring in a small plastic bag. You likely didn’t know this, but if you’ve been near me in the past six years, there was a 99.999999% chance that that ring was within 50 yards of me at all times. Right this minute it is less than a foot away. Even when I’m in the hospital, the ring is with me. All this time, I’ve kept it right where I received it - in the small plastic bag, in the tiny card, in the dainty envelope.

In the dark.

I’ve made a decision. I’m not going to keep my daughter in the dark anymore. NOT talking about her is hurting me MORE. I don’t like it that I pause before I say her name out loud, wondering if the person I’m speaking to will know who I’m talking about.

I’ve ordered a simple chain, and a simple pendant to memorialize my miscarriages. Yes, I’ve had more than one, but the first was mostly confusion. Mass confusion. As quickly as I found out that I was pregnant - at 27, with the man who would be my husband (I COULD GET PREGNANT, WHAT?!?!?), I lost the baby. I mean, the *day after* it was confirmed by the hospital. So...ten days? I got through that with the help of my amazing friend April, who brought me flowers and chocolates that night, and just sat with me. She’s definitely one of the angels I’ve met on this earth.

With the pendant, I will finally remove the small gold ring from its plastic sheath, and wear it openly.

The first time I've ever held the ring in my hand, and on my index fingertip to show scale.

I’m not going to keep my daughter in the dark anymore.

The pendant and ring together.

xoxoxoxoxoxoxoxoxoxoxoxo

Six Month Check-Up

2017-07-06T12:19:00.001-05:00

I stopped publishing about coming off of oxycodone because of something that I saw on facebook - took personally - and felt shamed. I don’t really want to go too much into it now, because that’s not really the focus of this entry, but I’m still shocked by who the secret jerks are.

via GIPHY

That’s all I’ll say about that.

Anyway - I had my six month check-up for my stem-cell transplant! For a clear re-cap, since one hasn’t been provided; after the stem-cell coated plug placement, I ended up re-fistulizing not once, but twice, which resulted in many emergency trips to Rochester by myself in screaming pain, and two extra surgeries. As I’ve said, I still have an open tract, and I’m being treated bi-weekly with silver nitrate (which chemically burns the tissue, theoretically getting it to fuse together). It hurts intensely (have someone put out a cigarette directly on your bum), and causes bleeding and weeping for days afterwards.

Pictured: Hell sticks

All in all, not fun.

However, at my check-up, the GI doc tells me that since the tract hasn’t healed, that I might be a candidate to do the stem-cell treatment a *second* time. They are in the process of re-applying to the FDA for the second round of the trial. I’ve touched base with everyone involved, from my surgical nurse to Jessica and Janell (the Research Assistants who are amazing), and they all seem hopeful that I could be helped again. Small bonus - my stem-cells are still...on file??...at the Mayo Clinic, so I wouldn’t have to undergo a second belly-fat biopsy. (Not that I don’t have the belly fat to spare, but I do have a gnarly scar from the first one that I’m way proud of! Can’t really show off the other scars. It’s frowned upon, generally.)

I’ve seen the other scars. They take pictures. Every time I have a check-up. With a big, fancy, paparazzi camera. They take a picture - BAM - it pops up on the computer screen, in my file. It’s intense. I have seen my butt WAY more than I have ever cared to.

In an extremely silly way, I’m proud of my butt. It goes through *so much*. I’ve had far too many surgeries (any more than one is too many, and I’ve had at least six, and five colonoscopies), invasive testing (CT scans, MRI’s, digital rectals), not to mention the actual crohn’s disease. Once this tract has healed, I should really do something to pamper it. Not literally PAMPERS, I’m not into that.

Seriously, though. My ass has been through a lot.

xoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxo

I'm Not Inhaling, Though

2017-03-31T19:04:00.000-05:00

Oh, this is always the fun part. I hope the sarcasm is loud and clear.

As I’ve said multiple times, due to sensitivities that cause my guts to bleed, I can’t really take anything for my pain other than Tylenol and percocet/oxycodone. I mean, they’ve given me much, MUCH stronger stuff during surgeries/stays in the hospital, but that’s what I come home with. I’ve been on some form of oxycodone since October. This is the third time in my life that I have had to come off of this drug. All three times I was on the drug more or less six months before everything was under control/I realized I was using it for emotional pain as well/I realized that I was going through withdrawal symptoms when I didn’t medicate on a schedule. I would be sitting here on my bed, running a low-grade fever, nose running uncontrollably, completely covered with goosebumps...before the slow, dawning realization that I *wasn’t* actually experiencing the flu, I was experiencing withdrawal.

It doesn't matter who you are; you're sexy when you're sick.

Email to my surgical nurse with my titration schedule to come off the drug. The minute I realized that there was a dependence going on I knew it needed to stop, pain or not. That’s the fucked-up thing about opioids - your brain is *telling* you that you’re in pain, you desperately need these drugs donotcutusoff!!! I need to figure out something else to help me get through the pain, and I’ve been practicing these things for the inevitable: using aromatherapy, using deep-breathing exercises, using forms of relaxation techniques. Sometimes they work, sometimes my demon just laughs at me good-naturedly while I deal with pain that reaches inside my bones and threatens to take up permanent residence, even though the rational side of my brain tries to reassure me that I *will* survive this. Many many people have survived opiate addiction, and mine isn’t even close to the worst.

I go to my surgical appointment. The surgeon sits down and explains to me that it sucks that I’m still experiencing pain, but he will not be the one babysitting me through my titration, and I need to get ahold of my regular doctor. In fact, *he* would prefer to get ahold of my regular doctor, because while he thinks that my titration schedule is a good one and reasonable, he is too far away to monitor me, and since he’s the surgeon not the pain specialist, he doesn’t feel comfortable doing it from 3 hours away.

He gives my doctor a call. On a Thursday. Had I thought about it for ten seconds, I could have told him that Thursday is my doctor’s day off. So he gives me a five-day prescription and sends me home. I call my doctor’s office the minute I get home, and one of the nurses call me back - they all know what’s been going on with me. Scheduling can’t get me in until the 29th (!!!), so we’re kinda spitballing about what to do. She also informs me that one of the days in the near future, he’s rounding at an old folk’s home, and that takes all day. I figure out later that it’s Friday, because I hear nothing from him until first thing Monday morning, when he works me in on Tuesday (whatta guy!).

I’m not sure what he’s going to do, but I hope he’s going to help me. He was the doctor who mostly monitored my second titration come-down. He’s going to yell at me and probably give me a bunch of “I-told-you-so’s”, because he did, indeed, tell me so. But I still have an aching open wound. What am I supposed to do?? I know that this country has a serious problem with these drugs, but I’ve never lied to my medical team about my use, and I’ve never sought these drugs out on the street, or their equivalents. I realize that that’s not much of a good thing, but all of my use has been doctor-monitored, filled by the same 2 pharmacies (one in Wisconsin, the other in Minnesota, and Mayo-affiliated). I *always* use Mayo doctors, I always fill at the same pharmacy at home, I’m as transparent as possible.

If I'm gonna tell on Mayo, might as well tell on Walgreens, too.

...Well - I built that up kinda further than it was, but I still had to sign a contract with my doctor. I’m not really all that concerned about the contract, although it says that he will perform urinalysis (which I told him upfront that I would fail), the only thing that will show up is drugs that I have a prescription for at the levels that they prescribe them at, and marijuana. My levels *cannot* be that high, although I have used small amounts of it daily for years. I think - with me being a fat girl - it would take at least six months of absolutely no smoking before I completely cleaned out. AND after that six months if I started melting off my fat, I think I would end up testing positive.

It loves you so much it wants to stay with you always, like your ex-gf.

It’s NATURAL. IT OCCURS IN THE BODY. WTF?!?

The last time I was discharged from the hospital, the doctor walked in and said “How are you feeling, Ms. Harden?” to which I replied, “Well, I’m ok I guess, but I’d rather go home so I can smoke a little bud.” He immediately started nodding and said, “I would rather have you smoke marijuana than take half the drugs on your list, including oxycodone.”

These tiny, dangerous....things.

I told my doctor about this. He told me that if I didn’t stop smoking, he wouldn’t treat me. He is *convinced* that people lace marijuana with methamphetamine. I'm not kidding. For the record, I smoke <3.5g/week, and anyone who knows weed can tell you that that isn’t all that much at all, especially considering I *should* be trying to use it for medical purposes. I could replace a large portion of the prescriptions that I am on to use a natural drug. (The list of pharmaceutical drugs I take *just* squeezes onto a regular sheet of paper.)

Local doc approves of my titration plan, and had emailed with the surgeon. At first he was a bit confused as to where we were, and I said 5mg 4x day, and then at the end of this week go to 5mg 3x day for two weeks. He acknowledged that it’s slow, but could also see that I was miserable. I told him that my plaques broke out in a fiery symphony of pain while I had to walk around Mayo Rochester this last time (stress??). Who knows why.

Going through withdrawal is the worst. They could give me drugs like methadone or suboxone (I’ve read - my doctor did not offer these to me and I sure as shit did not ask), but I don’t think that I’m that bad, and I’ve been able to come off of 60mg per day. There are people online that take double that amount (!!!) trying to come off of it cold turkey (!!!!!!). I’ve used my slow-but-sure titration plan, and it was just fine. I’ve had some miserable days so far, and I know there are more to come, but it’s better than cold turkey! The closest thing that I can relate it to is the flu - and I know it’s not the actual flu because I got my shot back in October. ;)

I try to stay hydrated, but watch out during sneezing fits, as it’s likely to come back to greet you in an urgent manner. As I’ve said, lots of fun.

Don't even act like you don't need 'em. YOU WILL.

Some days I don’t get out of bed and just try to ignore the feeling of my bones hurting, and Preston takes care of me. He brings me coffee and ice water before he goes to work. Usually by the time I realize that he’s brought me coffee, it’s cold, but I still drink it. I’m so blessed to have someone like him - he really takes care of me. He knows when I’m in too much pain to walk, even talk. He just told me tonight of days that I speak only a sentence or two, and it blows my mind. I know they happen, but I’m in such a haze I can’t control what’s going on.

Thank God for amazing roommates. I don’t know what I’d do without him, and he was certainly a gift to me. I did something right to have him watch over me. And through all of this? Is still changing my bandages, a minimum of once a day. That's right - I still have an open wound, that I'm supposed to tell the surgeon about....today? Monday? I have no idea. He said he would do something for me, and like Jen said "cutters will cut"....I don't want any more surgeries. What the hell can possibly be done for it?? It makes me nervous....

xoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxo

A Quick Update

2017-03-20T16:49:00.003-05:00

Ah, my darlings. There is so much to write to fill in the gap between December 15th and now it’s not even funny. Since most of that time I was out of my mind in pain and/or on drugs (both happened, frequently) I didn’t feel that I could comprehensively write in my blog, but I was doing my best to keep notes as much as possible. I’m sure you’ll understand that there were days that not only was I not picking up a writing implement, but the only touching of my computer was going to be to let it know that yes, I am still watching Bob’s Burgers, and if you stop it now, Netflix, things might get ugly up in here.

This entry will be a short one, though. I mostly want to stop using a pseudonym for my hospital, since all of you are fully aware that I am being treated by the Mayo Clinic, and I’m proud to be part of their studies to (hopefully, theoretically) forward medical progress. I can’t entirely recall why I decided to use a pseudonym in the first place, other than I didn’t want to be talking shit about specific doctors and nurses, but ah well. I haven’t met very many shitty ones through this system, and since I don’t have a problem telling them that I think they’re shitty to their face, why would I care to say so to family/friends? (I’m thinking of one ER physician’s assistant, Dawn - not even good enough to be a doctor.)

The Mayo Clinic is right up my alley, too. It’s the number one hospital in America for Gastroenterology problems (ding!), it’s got an amazing historical legacy (yay!!), it’s had some crazy patients you would not believe (there’s a reason the David Geffen Auditorium exists in the Gonda Building on campus), and its contributions to science and medicine are mind-blowing. My favorite?? They helped create the g-suit for pilots!! Nerd. Boner. And now? I’m part of their legacy. I might not have my name on a little brick for people to google someday, but I’m living proof that you can take belly fat, grow your own stem-cells from it, and in a transplant, use those stem-cells to heal an area of your body that is damaged and not healing. (I’m not 100% yet, but it is, in fact, working!)

I still have a lot going on, though, so I've been trying to keep my thoughts on paper (gasp!) as I go along. It's not the best method, but it's something. I don't know if I'll use it or just go with what I'm feeling right now, which is pretty significant. Undecided. I just wanted to let you know I'm alive and that I'm dropping the Ketchup Klinik shit. Done.

xoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxxo

Nerves of Incapacitation

2016-12-11T22:43:00.000-06:00

So...as a ton of you know, I’m having my second surgery on December 15.

I’m terrified.

Normally, surgery doesn’t scare me. It used to, but I’ve had *so* many since 2009 as well as colonoscopies (which you’re essentially asleep for) that I’m accustomed to the process. Honestly? I can’t even *tell* you how many of each I’ve had at this exact moment, without serious thinking about it. Brain damage, what can I say?

I’m not actually scared of the process - that’s not unknown territory - but I’m scared that the procedure will *fail*. I’m still having issues that have been going on fairly steadily since June of 2015...WARNING: GROSS ADMISSION AHEAD……

Don't say I didn't warn you...

Still with me? Ok. The seton (rubberband) is in place to keep the wound open, because if there’s still pus being produced, it would just start the whole process over again when they would sew shut the abscess/fistula; the pus would collect, with intense, mind-bending pain, and more surgeries.

There is still pus being produced from mine as we speak. It’s not a ton, but it’s enough that I’m worried that this won’t take, and I’ll just end up sick and back in the hospital for surgery to take *out* the plug that they’re inserting on the 15th, and subsequently I’m out of the study.

That would be greatly saddening to me. Since I don’t have children, I thought that being one of the original twenty people to start the research for other body parts that could be healed by their own stem-cells would be an actual *legacy* that I can leave behind. Maybe that’s my purpose on this earth - to help others in ways that others might be too weak to handle (not to say that I’m 100%, because I most certainly am not).

I want to help others with this study. That’s been the whole point the whole time for me, and if it doesn’t take, I will be devastated. I’ve waited over a year prepping for this surgery, trying to get my body as healthy as possible as quickly as possible, and I’ve made strides. I would say the biggest one is the fact that I quit smoking on October 18. Since then, I’ve had to wear a patch twice, and had two drags off of my roommate’s cigarette, but that’s not bad. I’m nearing on two months, and that’s a definitely positive thing. I’d like to be around for my nieces and nephews for as long as possible.

I shouldn’t be thinking negatively about the surgery. I am hoping that the stem cells will help heal me in a way that I can’t truly fathom right at this moment. I’m really trying to keep up the face that “This is going to work! I’m going to be ok, and help pioneer a new era in medicine!!!” but it’s truly difficult. It’s no secret that I’m just generally full of anxiety, but this one has me on edge. The closer I get to the date, the more jittery I get.

I know I can get through the surgery. I’m terrified of the pain, and how the doctors will help me deal with it. Let me tell ya - any surgery near the brown eye hurts like hell. You never realize how often you reflexively clench those muscles, but it’s often. I wish that we didn’t have such an opioid epidemic, because with my issues, those are really the only thing that I can take that works (although I was given an OxyContin for the first time during the first Exam Under Anesthesia and I can see why it’s abused, but it was a *huge* help to me).

I’m jittery right now just thinking about it, and there’s no physical reason *to* be jittery (no soda, not a lot of coffee, etc).

Keep your fingers crossed for me. I really want to be a part of this group.

I want to leave a legacy, even if I am just a number.

xoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxo

Season of the Ditch

2016-11-06T09:08:00.002-06:00

I should have known when I woke up at 2am and couldn’t get back to sleep that it wasn’t going to be a fun day.

I’ve never driven myself to Rochester, although I’ve been there several times. I never would have made it there without GPS, because there is no real straight-shot from my house. Having said that, GPS was an absolute nightmare, because it takes me on the most twisty backwoods-hillbilly route that it can possibly come up with, in the interest of saving two minutes.

And it’s foggy.

And it’s very hilly (everyone from this area is saying DUHHHHH right now).

And the deer are absolutely ridiculous in the throes of the yearly rut. They’re running about, willy-nilly, having a fabulous time (jerks), while I attempt to keep up with my not-running-well -in the-boonies GPS, which is giving me a 30 second heads-up on any and all turns I’m making. I’m going 45mph, pissing off the locals, down the hellishly curving roads of rural Wisconsin and Minnesota, whilst also dodging overly-zealous, four-legged crepuscular mammals like some fucked up backwoods Frogger.

Didn't your momma teach you to stay out of the road? Oh yeah, she's probably dead.

I find out in short enough time that the cherry on top of all this shit pile is there is construction completely blocking the way the damn GPS brings me into town. I’m going to be late. Despite leaving 45 minutes early, I’m already running late. I haaaaaaate being late. I end up being 25 minutes late, because I had to park six blocks away and hoof it to the building - the parking ramp was full when I passed it in my car, but it had room once I walked up to the building! Yay!

Question for the people living up here with me: Why in the name of Baby Jesus do they start *massive* road-construction projects seemingly just before the snow flies? I mean, we've had snow in October, and we haven't gotten any yet (knock on wood), but I have never understood why they break ground on these giant projects in mid-late October. Just wondering, I digress.

At least we can see the tops of the barrels above the snow. Usually.

Ok - bitchy moment - I’m really sorry to my nurse friends out there, but the next cocky-ass nurse who thinks she knows the body I’ve been living in for 36+ years better than I do is going to get throat-chopped. I’ve been poked so many fucking times I *KNOW* which veins are going to roll, I *KNOW* that you’re not going to get a good stick there, and I *KNOW* that you think you know better. Listen, I understand that you have little tricks of the trade that work on some people. You need to understand that I’ve been a pincushion for cocky jerks like you for too long, so when I give you a vein, TAKE IT. Seriously, bitches, stop. Throat-chopped. Gonna do it.

Not kidding...

Dear Guy Wandering the MRI Waiting Area in Scrubs (like the rest of us);

SIT THE FUCK DOWN. You’re putting me on edge and I’m already a mushroom-cloud layin’ motherfucker. I realize you might also be having some anxiety issues, but you’re not helping anyone pacing like that.

Ok...reality check: Why am I so angry? First of all, I’m starving. Naturally I’m not allowed to eat before the MRI. I generally only eat once per day (I have serious food issues), HOWEVER: When you tell me I can’t eat? Suddenly I’m ravenous, and I’ll eat just about anything - even if it’s a trigger food. So I show up to my MRI 45 minutes early, in the hopes that they can get me back there faster, and thus food in my face sooner.

No such luck.

They eventually did call me back, and I got my IV port installed (this is where I had my run-in with Nurse McCocky), and I’m sitting there listening to my stomach rumble, knowing that I can take down at least three of the people in the waiting room for their soft bits. Don’t mess with this chick when she’s hungry. I’m constantly scanning the room for weaknesses, I have culinary knowledge, I always carry at least one knife with me (it’s a Leatherman, but still), and I like my steaks rare. Watch it.

I would *destroy* this, when normally I can't finish half

Second reason could be a recent medication change. I need to try to relax, which I know I’ll do once I’m in the MRI room, but while I’m in the waiting area, I’m just completely on edge. My psychiatrist cut my seroquil by 200 mg (down to 400 mg/night) and it’s been just over a week. Since she lowered it, she indicated that I would want to blame all of my stress/anger on that - and I am definitely feeling effects. I’ve been quite calm for several months, but I don’t want to be on *all* of the medication that I’m on (which is a LOT). Blaming it on the medication is so much easier than admitting that I’m an asshole with anger/impulse control issues. My doc tells me not to be too hard on myself, because I have so much going on right now, the two biggest being starting the stem-cell research project and all that’s required of me there, and me changing my meds. In addition to my psychiatrist telling me that I’m going to be facing some significant stress coming up, the colo-rectal surgeon echoed her nearly verbatim. With two doctors telling me I need to keep my head cool during the next few months...I guess I should try to follow doctor’s orders, hey?

Drugs are a helluva drug

I’m trying to keep my head cool, and they call “Jillian” (eye roll). I don’t know why I get comfortable in the embrace of an MRI machine, but as long as it’s a basic MRI with no breath holds (or - God forbid - any freaking balloons), I can easily close my eyes and completely check out. It’s even better when they give me music, but I’ve been known to try to dance in the machine. Pro tip - they tend to frown on that.

No freakin' balloons.

Anyway - the MRI was completely straightforward and boring (no complaints from me), and I was shocked that the surgeon had the results by the time I got to his office mid-afternoon. Pretty much, the plan is in fact to move forward with the study (it’s officially official, I’ve signed paperwork), and I’m having what I’m referring to as my “little” surgery on November 8 (The Day of the Impending Apocalypse). The surgeon is going to take a belly-fat biopsy to give to the lab nerds so they can grow my stem cells. Then he’s going to do an Exam Under Anesthesia (they capitalize it, so I figure it’s super important). I casually mentioned to the doc that last year, he had mentioned something about taking out my existing band and putting in a larger seton (read: rubberband butt piercing), and he looked at me and shrugged and gave me the most sanguine, serene face and nodded, saying “yeah, probably”.

What's going through my head...

I didn’t mean to remind you, doc. I wasn’t like...looking forward to a bigger rubberband, not that I’m judging anyone that would like a larger rubberband.

That’s all kinds of inappropriate jokes if you didn’t catch it.

So - while y’all are voting (for the love of vaginas, get out there and vote), I’m going to be having fun Under Anesthesia. I’ll be home the same night, and I’m sure I’ll want to facebook while I’m still Under (effects of) Anesthesia, so that’ll be good times I’m sure.

I'm also going to release the link of my gofundme page now. I'd like as much time as possible to allow for collection, especially because of the holidays. I love all of you! I appreciate all that you do for me, because you all contribute already to my recovery and well-being! More love!

Stem-cell Jill Help :)

xxxxoooooxxxxxooooooxxxx

Stem-Cell Research GOOOOOO!!!

2016-10-26T14:42:00.000-05:00

This ball started rolling much faster than I anticipated, after a year of nothing.

I shouldn’t say nothing, I *was* prepping for the surgery, seeing if I could get my crohn’s under some kind of control with medicine. I have not had good luck with this in the past (6 weeks in a Minnesota hospital with pancreatitis because of a reaction to a medication) and one of the medications that my Rochester GI team wanted me to try was a form of chemotherapy, which I was and am emphatically *not* okay with. Luckily, my Eau Claire GI team agrees with me, and so therefore I’m just on double the dose of Humira (which I’m not thrilled about either, but they could not control my crohn’s *sigh*). The double dose of Humira has been the closest to what I would call remission in years. I’ll save you the symptoms of my recovery. (Actually... as of my appointment on the 17th with my main GI doc, he’s telling me it looks like I may in fact be in remission!)

Over 50 shots in my belly.

The reason for contacting my Rochester surgery team was because my Eau Claire surgeon (you remember, the one that placed the seton!) just up and mysteriously disappeared. It may not be such a mystery to his co workers, but to his patients, he just left notes as to who is now in charge of their follow-up. Naturally, he wants me to drive 45,000 miles* (*may be an exaggeration) into Minnesota to have my (still open well after a year) wounds looked at. When I called, the secretary of the study got in touch with me and asked me if I was still interested in participating in the study, which I gave an exciting “YES!” to (because I found out more about it! - just wait, I’ll share) and she wanted me to come in as early as the first week of October.

Pump the brakes, sweet stuff.

As most of you know, I was blessed with a beautiful new niece on October 5. There is absolutely no way in hell that I was going to miss that or any of the resulting early cuddle time with my first blood niece. Not. Happening. Next date choice, please!

November 1 I will come in early in the morning, have an MRI, chill while the doctors take an eternity to look at it, and then have a huge meeting with the colo/rectal surgeon, my gastroenterology team for Rochester, my surgeon’s team, the secretary of the study (who is the shit, and I really love - her name is Jessica), and probably the janitors, the president of the hospital, the person who carries the clipboard, and all those fun people that I can never remember when they pump me full of forget-it-all, in addition to students, cause Ketchup Klinik is a teaching hospital! Then! I’ll be having exploratory surgery and a belly-fat biopsy on November 8. The doctor needs to see what he’s getting into (and last time I knew, he was going to put a wider rubber band in, so that’s something to look forward to :/ ) and then they will take a biopsy of my belly fat to see if they can grow stem cells from it! If they can’t grow any from that batch, they will try another surgery to see….if they can’t get it to work a second time unfortunately I’m out of the study, but for some reason, I am thinking that they will have no problems.

Still not my medical team. You can see some of them in the video below, and I'm sure you'll agree as to the hotness factor.

Then - around six weeks after they harvest and grow the stem cells, they will coat a plug with my own tissue and hopefully successfully seal my wound without any adverse side effects - at least this is the idea. I was on their website the other day, and I wasn’t aware that not only are they interested in being able to cure abscesses and fistulas, but they’re hoping to be able to heal crohn’s itself! I’m going to be posting the link at the bottom that will lead to the hospital website, in case anyone is interested. :)

Here’s where it kind of sucks for me. When I have the first surgery, I’ll have to take a taxi (paid for by my insurance, hallelujah, thank you) before and after, as I have no caregivers available to take me all the way over there and sit for hours before driving me home. The combined trip there and back clocks in around five hours, driving with someone I don’t know. (Luckily I carry my earbuds everywhere - sorry if I’m rude.) It becomes worse during the second surgery. I have to be in Rochester, Minnesota for three days. The way hospitals work for surgeries up here is they give you a voucher with a personal PIN number and a phone number to call. You are to call in the night before (usually after 5pm) and *then* they tell you when to show up for surgery the next day. Jessica - the one I was telling you about up there - said that the surgery call is usually very early.

Not a joke. It’s kind of a nightmare. I want to be in Rochester the night before so I am as settled as possible in my room and not trying to get checked in somewhere while I’m all messed up on surgery meds. The day after my surgery - the paperwork says 24 hours - I’m to have another visit with my doctors before I’m allowed to (finally) go home.

It kinda gets worse for me.

I’m on disability. For those of you who don’t know what that means, it means I am severely limited to what funds I get every month. Of course I pay all the normal bills everyone would, I get no discount. I also pay for food and prescriptions (of which I have a ton) out of pocket. Nearly all of my “extra” money goes for buying groceries/things for the house such as toilet paper, paper towels, laundry soap, etc. Why am I telling you my financial business? Because I don’t have the money to pay for a hotel room for two nights, gas there and back, and food that I will be forced to buy out in some form or another. There are four charity homes around the hospital, and I qualify for only one, which you not only have to pay for ($40 flat fee plus $30 per night) but you also have to clean your room. I don’t think I need to remind you I’m having butt surgery, but I’m having butt surgery with no caretaker. There is no way in hell I can clean up after myself. Not that I’m a pig, but I can’t make a bed properly or vacuum while convalescing.

However:

There is a lovely hotel literally steps from the Klinik. It would be great even if I had to go outside, but I don’t - there’s a skyway and an underground tunnel, so I needn’t be outside at all and in fact could probably be pushed all the way to my room post-surgery. And they have economy rooms for Ketchup patients who just need somewhere to recover. (I don’t need anything fancy, I just want it close so I don’t have to depend on a taxi or shuttle while all I want to do is rest.)

So much easier than a taxi or shuttle.

Conundrum.

I don’t really qualify for anything because I don’t have cancer (hallelujah), and like I said - the one place I *do* qualify for I a) have to pay for anyway and b) have to clean while I had surgery less than 24 hours before.

Sooo...as much as I don’t want to, I think I will have to ask my friends/family/facebook family for help. I wouldn’t publish anything until I had dates set in stone, and right now they’re not quite there yet. Even if I have my belly-fat biopsy on November 8th, that puts 6 weeks at December 21st - which Jessica said that they will likely not do, being that it’s so close to the holidays. She said if the November dates work that it would likely be the first of January.

Bottom line - I don’t want to ask for your help, but I have to. I have a gofundme set up, but I'm not wanting to release the link because I am not happy about asking.

I’m also aware that it’s happening around the holidays and that sucks, but I hope I’m not asking for an outrageous amount. Believe me, I’m going to be as conservative as possible, but there are things that I wasn’t even thinking about until I started doing some research (such as parking - free in Eau Claire, definitely NOT free in Rochester, neither public nor hospital).

And of course I’m going to let you all know via facebook how I’m doing after surgery and whatnot. My roommate’s little girl said that I should take my stuffed bunny with me, just so I have *something* with me. I don’t think that’s a terrible idea. :D

Short article and video (featuring my medical team)

Longer, fascinating article about the new frontier of medicine, getting the body to heal itself

Another (!!) Rockstar Piercing (Pt 3)

2015-11-09T15:14:00.001-06:00

I did not intend for this to be a three-part series, but it’s looking like lumping this in with the other two will make the most sense. I’ve already written about the study that Ketchup Klinik mentioned to me that I may be a perfect candidate for, and I had my appointment at the end of October. Now I have more information, and I have a much better idea of what hoops I’ll need to jump through to complete the study (if all the heads of the study agree that I am indeed a candidate; it is not set in stone yet).

Good-ish news: this post won’t be quite as graphic as part 2. It may be clinical at some points, but not terrible.

On the 22nd, my cab picked me up at 4:30 am to check in for my 7:30 MRI. I got my IV port set, got undressed and into my sexy hospital gown and booties, and went back to the waiting room to display my hairy legs to the rest of the people waiting. (Hey - I live in Wisconsin. I don’t shave my legs in the winter...it’s fucking freezing up here and I need that layer of warmth.) Also, I have tattoos that scared the hell out of the people on my left side and delighted the people on my right. I was in there for maybe three minutes, when a man came to the door and said “Jillian...uh..Harden?” I shot back “GILLian, and that’s me!” I asked him about drinking contrast - nope, I didn’t have to. I asked him about contrast going in *cough* the other way, to be held with the balloon - nope, not happening. I asked him about holding my breath during certain moments - nope. He happily said that this is a very easy pelvic MRI and I could take a nap if I wanted to, the only thing “extra” I had to do was the IV contrast.

I'll be having none of this

Holy. Easy. MRI. Batman! Seriously, best one ever. If I had music, it would have been sheer perfection.

When he was done, it was shortly after 9:00am, and I had hours to kill. My appointment with the Associate Dean/Colo-Rectal Surgeon/Completely mouth-wateringly hot doctor wasn’t until 2:30, so I wandered around the building, took a walk outside (which, in hindsight, was not a good idea when my backpack weighed at least 75 pounds and I am woefully out of shape) got something to eat (thanks, mom!), saw that there was a walk-in flu shot clinic during my free time, so I took advantage of that. Then I pretty much just found a comfortable chair (there are tons of them scattered all over the building), and continued working on a page for my altered book/art journal. Also - me being me - struck up a conversation with a conversation with a couple old enough to be my parents and kinda ended up hanging out with them until a half-hour before my appointment (they were heading back to Iowa - the timing was perfect).

So I went and checked in. The receptionist printed out and gave me the long list of my prescriptions that they had on hand. You would think because I’m a Ketchup patient in Wisconsin that they would have all of my information in Minnesota, but no. No, they do not. In fact, they’re quite snobby about the whole thing. Anyway, she hands me the list, and right at the top I see that it’s wrong, so I sit down with the list that I carry with me (because the list is extensive) and just tear up Ketchup Klinik’s list. I mean, massive changes. I couldn’t help thinking WHY ARE YOU NOT SHARING INFORMATION WITHIN YOUR KLINIK?!?!? So frustrating. And I’m fairly organized - what about the poor chumps that aren’t organized? Wowzers. I just can’t imagine.

They call “Jillian” back (I’m so used to it), stick me in a room, comment on all the prescription changes that they need to make, and take off through a back door, ostensibly to enter all of those changes. I’m casually perusing the large rack of information pamphlets, when 42 people enter the tiny room that I’m in. Ok, I’m exaggerating, but seriously, there were like at least 8 people that entered the room. The first one was the Physician’s Assistant that I had already met (and think is totally cute, and I also think HE thinks that I’m totally cute, I just get that vibe) and he introduced me to the Associate Dean of Ketchup Klinik, the man that I’ve been waiting to see….who is also freaking cute. OMG are all the cute guys working at this place?? Or (most likely) I just haven’t been outside all that much since April, so just about everyone outside of this town is drool-worthy. Stupid hormones.

Pictured: Not my medical team, they're WAY hotter

The Associate Dean/Surgeon talks to me for a while about my background with crohn’s disease, what kinds of treatment I’ve been through, what treatment I’m going through right now, and the fact that nothing has seemed to work for me (which is why I’m on Humira - it’s for people that haven’t responded well to other treatments, and I’m sure some of you remember me being in and out of the hospital for six weeks in early 2013 with pancreatitis...that was caused by a drug I was taking for crohn’s). Then he begins talking to me about the timeline with the abscess/fistula and the seton placement. This proceeds to an exam, and he comments about the amount of fluid/blood that he’s getting, and asks if this is normal for me. I indicate that what he’s getting is a light amount, and I usually get a considerable amount more. It’s a blissfully short exam, and he then says that he indeed thinks that I’m a candidate for the study that his physician’s assistant had brought up to me a few months ago.

I’m on the edge of my seat.

“But first,” he says….and my heart drops a little.

“I want to get in there, clean it out, make all the holes much bigger, put in a bigger seton and see how you do with that,” and my heart is somewhere around my toes. ‘Cause yeah, that’s what I want - to be cut open, make everything bigger, including that gd rubberband. I’m holding back tears at this point.

What I'm picturing

Then he asks if I’m seeing a gastroenterologist, which I find to be a kind of ridiculous question, because I’m on Humira. Where do you think I’m getting this stuff? I tell him that yes, I’m seeing the GI team in Ketchup Klinik Eau Claire, and he’s like “um...yeah, I need you to see my gastroenterologist” (this is a moment where I think they are so snobby). I later find out that the GI doc that they want me to see is a head of the study, so that makes a little more sense, but they are incredibly snotty about their other klinik’s.

Here’s what they’re going to do after they cut me to make everything bigger to see what that does: if it is still not healing properly, they are going to put me under again, look at the wound while I’m under, take a biopsy of my belly fat, and send that to the lab to have stem cells grown. It will take about six weeks for the stem cells to be grown properly, then they will coat a plug (that has been used in the past, but not entirely successfully) with my stem cell tissue, call me back for another surgery and put that in and sew me up. Then I’ll have an entire list of visits that I have to make to Ketchup Klinik so they can check up on my progress. The entire study is two years, but can also last the rest of my life. I wasn’t planning on living in this area for that long, but I’m too excited to help other crohn’s patients that I can sacrifice that time - that’s not a huge deal. I won’t live here for the rest of my life, but I can do two years.

This isn’t going to move as fast as I want it to, though, because the lab has to shut down for the year here shortly for some kind of government thing, so I don’t even know when they would start. I’m kind of sitting on pins and needles (or very uncomfortable rubberband loops), because I want this to stop ASAP, but I guess this is a learning opportunity for me. I’ve never been the most patient, and now I must learn.

xoxoxoxooxoxoxoxoxo

Taylor Swift and Vulnerability

2015-11-03T19:16:00.000-06:00

I can hear what you’re thinking, in the collective brains of all my friends and family out there - Jill, are you seriously fucking writing a blog post about Taylor Swift??

Yeah, I am. Stick with me, homefries.

When I’m writing this, Taylor Swift is only 24 years old. Love her or hate her, she’s put together one hell of an empire for herself, hasn’t she? Think about that for a second. 24. What were YOU doing when you were 24? I don’t say this to make you feel bad (or good, for you achievers) about yourself, I just want you to be aware of how you felt when you were that age. I know that I was still trying to figure out life.

Wait.

What the fuck am I talking about? I’m *still* trying to figure out life.

I was little more lost (so to speak) at 24 though. I’m a bit more comfortable in my skin at this age (as I write this, it’s 35). I was scared. I had essentially just packed up my truck and moved from Ohio to way northern Wisconsin. I was living in a motel (!!!), I did have a job (very close to the hotel, natch), but I was nowhere near Tay-tay status. She has paparazzi in her face 24/7, and her every move is scrutinized, more, because of her reputation with relationships. One could most certainly make the argument that she put herself in that position - absolutely - but remember that you screwed up in relationships when you were that age (or younger, or older), and if you’re perfect and married your high school sweetheart, and you have a perfect life with 2.5 children and a dog, well, bravo for you (read: I hate your guts).

The rest of us don’t have that luck.

So that kind of brings us around to her most recent album, 1989. Another album was recently released in September of Ryan Adams covering that entire album...his interpretations of all the songs. I read an article on The Current (an *amazing* public radio station in Minneapolis) about the release (as I’m listening to his version of Blank Space) and was moved by a quote of his; “ [The songs are] very vulnerable and brave…” and I started really *thinking* about vulnerability. I immediately switched over to her version of the song (which - make fun of me if you want - I love *sigh*) and listened to it with new ears. It is very vulnerable and brave, as is Shake It Off...and the rest of the album. Ryan’s version of 1989 is amazing (I might be a little in love with him at the moment) and moving; you can hear that there is not a lick of cynicism in his rendering.

Think about those lines. “Ain’t it funny? Rumors fly about me...So it’s gonna be forever, or it’s gonna go down in flames. You can tell me when it’s over if the high was worth the pain. Got a long list of ex-lovers, they’ll tell you I’m insane. I got a blank space baby, and I’ll write your name.” I absolutely loved this song, because I *felt* it. Seemingly, the girl (Taylor, presumably) in the song went through a promiscuous period that I have gone through myself and may have mentioned in a previous blog post, but just in passing. I’m coming down harder on the issue now because it should be discussed. I skimmed over it the first time because I didn’t want to deal with slut shaming. Now I’m ready. Call me whatever you want, but I know who I am, and I’m paraphrasing a Tyrion Lannister quote, but I’ll wear it like armor.

Now, really absorb her lines. That is a tough thing to say for a 35 year old who is comfortable in her skin, let alone a 24 year old, let alone Taylor Swift who always has a camera in her face. And this poor girl has to deal with slut shaming on a constant basis. I’m not going to keep repeating that she is partially responsible, but do you think she could have really escaped all of those paparazzi? I don’t know either, because I’ve never walked in Taylor’s shoes. She’s also famous (as everyone knows) for writing songs about ex-boyfriends or ex-lovers ...skim over any of the YouTube comments, and those trolls are just foaming at the mouth attempting to figure out who *this one* is about. Really? Is that wholly necessary? Do we really need to know what’s going on in her bedroom? Why? I certainly didn’t want anyone to know what was going on in mine. That was for me, and me only. It still is. I understand that she’s a little more...up-front about her business, but if she doesn’t offer it up I don’t think that it needs to be brought up otherwise.

This is not the first time that vulnerability has come up today (or in the last few months for me) so I think I should try to touch on it a bit. Writing for the blog is extremely difficult, because I expose myself a little more every week, and that’s fucking terrifying. If you don’t think it would be, you’re probably a narcissist. I’m enough of a narcissist to think that people would *care* about something that I have to say, but I’ve actually had people flat-out tell me that they’re interested in what I have to say. In more than one setting, and complete strangers. (I think I mentioned other therapists and people I’ve met in looney bins.)

So there.

I was sent a surprise by a high school friend recently, and it’s a total metaphor for me writing my blog. She calls them my thinking/writing pants, and I’ve got them on now. It’s a pair of amazingly cool leggings, but I am totally not used to wearing something so tight - I feel naked. I asked her - K - how long it would take until I felt not-so-naked and just walked out the door with them on. She says that she doesn’t even think about it anymore - they’re now pants. Then it hit me - the longer I wear them, the more comfortable I feel; the more I write, the more comfortable I’ll feel doing it and publishing the results.

It’s a terrifying experience to put yourself out there. I would have loved to have been in Taylor’s head as she recorded, as she released the record, and the video. I’m sure she was scared, but not as scared as the first time she took the stage, or stood behind the mic. Just keep moving forward - it’s fucking frightening, but put yourself out there. I’m sure I’ll get knocked down - everyone bombs. I can’t think about that right now. If I worry about what I can’t even predict, I’ll never get anything done.

Some days I just sit at the computer and try to will the words out of my fingers. Some days I write about stuff that will *never* see the light of day - it’s for me only. I’ve got a “stack” of posts that I’m not quite sure what I’ll do with - they’ve got bits that I *love* in there, but as a whole, they just suck. I read them all occasionally, to see if this piece will fit with that piece, but the thought “this is going to suck and I’m going to lose readers” is always in the back of my head.

But I keep writing. And I’m going to keep publishing.

xoxoxoxoxoxoxoxoxoxo

August Attempt

2015-10-26T16:43:00.001-05:00

The first time I tried to commit suicide, I had just been let go from my job. A job I loved.

I don’t think I’m legally allowed to say “fired”.

I tried by swallowing all of the xanax that I had (which was a considerable amount at this time, because as I said - I was happy at my job - and would just take the pre-filled courtesy refill prescription every month), and drinking vodka. I don’t normally drink - plus with my crohn’s disease it is not a good idea- so drinking vodka straight out of the bottle? This was pretty tough on me and I couldn’t tolerate much.

After a while, I was saying some *seriously* whacked out shit on facebook. One friend of mine - who is a nurse in Ohio - sent me a short message: “are you ok?” and I fired back “NOPE”, and after that she left me alone. A Minneapolis friend (N) was also on high alert as to "Jill-is-scaring-me" and I don’t remember much about him coming over, just that he came over as soon as humanly possibly to be with me.

In the meantime, my ex showed up before N got there, and just screamed at me about how stupid I was. He (X) then suggested I take more pills, to make sure I got it right. X started going through my medicine cabinet looking for more of my prescription medications. Now - I don’t know about the rest of you, but I have *never* kept any of my prescriptions OR OTC medications in the medicine cabinet. Maybe I’m weird, but that’s where I keep my toothpaste, razor refills, new toothbrushes, eye makeup remover...that kind of stuff. So I slurred at him to stop knocking my shit around, he wasn’t going to find anything there, and to just leave. The xanax was just starting to kick in, and I wanted him gone before N got there. X threw a bunch of empty pill bottles that he found at me, and slammed the door as he left.

Right here is where I was wishing I had access to the door camera like I did in college, just to make sure he left and wasn’t lurking around my building. He might have thought he was Billy Badass, but N...N would have smeared him into the hallway carpeting.

Pictured: Testosterone

I guess the lesson for me here is after milquetoast men I needed testosterone, but I digress.

I remember letting N in, and I remember the absolutely fantastic hug that he gave me. Being enveloped in one of N’s hugs is truly a wonderful experience. He smells delicious, he’s warm, he’s a good kisser, and he does not let go; a hug from N is so wonderful these words here fail miserably at trying to describe the perfectness and the feeling of *safety* that you feel while he’s enveloping you. After we went upstairs to my apartment - however - I don’t really remember much at all. I remember blubbering at him for hours. I remember him holding me, the whole evening. I remember telling him about what X pulled, and N said something like “oh please let him show up when I’m here” and I replied, “Funny, but no”.

As I’m sure you’ve figured out, I failed miserably at my suicide attempt. All it did was make me sleep - hard - for several hours. In fact, I think I just got up, got a drink of water, used the restroom, and right back into bed. I want to say that it took me approximately a week to completely shake off all those xanax.

When I failed, however, I looked online to find out why I failed. I found out that it’s not really possible for someone my height and weight to overdose on the amount of xanax I had, even with the vodka. I did my research, and I made sure to find out exactly which one of my medications would kill me next time, and I stored that in the back of my head. I have a large library (now) of things that would do it. It’s not something I’m proud of, but there it is. When you’re not thinking rationally you do some pretty dumb shit.

I never went to the hospital, because I didn’t have insurance anymore. I wouldn’t have allowed myself to go, because when I woke up I just felt...even lower than I did when I swallowed all those xanax, if that’s at all possible. I’m kinda glad, ‘cause I don’t think I want to find out what a Minneapolis looney bin looked like, especially since I was completely indigent at the time.

I certainly don’t remember a lot about at least three days of that fiasco. The only “diary” I have/had about it was facebook, and I was writing some seriously dumb shit. Any of you that know me well know that I cannot stand misspellings, and those days were chock full of them. Not to mention the ravings of a mind not under my control. It was certainly under the control of my devil-mistress, xanax.

She's so cute, though.

When I think about what I’ve done to myself, I imagine that I’ve shaved off layers of my brain. They’re thick layers, to be brutally honest. I like imagery, though, so - when I took this large dose of xanax, thinking it would kill me when I mixed it with the vodka, knowing what I know now, that was the first slice of my brain - gone. It was probably not as thick as the second layer, which happened in March 2015.

But that’s a story for another day.

xoxoxoxoxoxoxoxoxoxo

My Rockstar Piercing Part 2

2015-10-18T16:32:00.001-05:00

Remember where we were last week? I was just going into surgery for an abscess that Ketchup Klinik had multiple opportunities to catch, from ER doctors to my PCP, not to mention at least 2 in the gastroenterology department. Now I’m under the knife from Holy Hospital, who caught it in under three days.

WARNING: GRAPHIC AHEAD

I wake up. They tell me what they’ve found. I’m not happy. It is an abscess as they presumed before I went under the scalpel. It’s not only an abscess, though. It is also a fistula. To dumb it down entirely, it’s a hole that bores through your body, and this one bored through to my anus. I can count myself lucky that I don’t have a fistula that bores into my vagina (pus and/or fecal material moving through this opening) or my abdomen. I knew I’d get fistulas when I was diagnosed with crohn’s, I just didn’t think it would be so quickly?

So, ok, I have this open wound near my rectum. It needs to stay open and drain all the gross out of it. If it closes, that could be very very bad and require *shudder* cutting open in the office, or another surgery.

Turns out I should have been thinking about the other surgery.

I had a phone call with Shannon, GI. She was quite contrite. Very apologetic. I was pretty angry with all of my Ketchup Klinik’s doctors and nurses at that point. She said she wanted to see me ASAP and that I might need to see her surgeon there just to make sure we were all good. I said fine.

I knew they were going to cut me. I’m not stupid.

I got to Shannon’s office, she examined me with a GI doctor that I had never met, and they agreed that I needed to see the surgeon. Like right now. I go up to see the surgeon. He schedules surgery for Thursday. It’s Tuesday. He sends me to his nurse to pre-register and get some blood drawn. I’m internally freaking out because THURSDAY? I’m usually made to wait a week or more. I’m not entirely complaining, because I like getting it over with but damn! And the way you know what time your surgery is is by calling in the night before and entering a code, and it tells you what time to show up. I was to show up at 6:30am.

DAMN. (WARNING: IT’S ABOUT TO GET MORE GRAPHIC)

I was there to have my rockstar piercing placed. This piercing has been done on people since Hippocrates. One of the oldest medical practices still in use today. I was having a seton placed. It’s dangerous to do colo-rectal surgery on a crohn’s patient; anything you do that could possibly compromise their sphincter muscles (especially by cutting them!) just threatens their future continence. This particular surgical move is designed to not do that, it’s designed just to keep it open so the wound can drain entirely. It loops through the now-open abscess, through the fistula opening, out the anus, and is tied in a loop. Left at the end of the loop is the extraordinarily painful (but I wouldn’t find out until later) what I call the “bunny ears” - if they go one way, it’s super irritating and I must move them as soon as I can. If they go the other way, I’m crying and I need to move them right now and I don’t care who sees me. Also, the wound leaks. Constantly. When I got my hysterectomy I threw away all of my “period underwear” in a gleeful hysteria (see what I did there, nerds like me, haha?), thinking that I would never again need them. How wrong I was, and just over six months after the hysterectomy. Blerg. I thought I would never need a pad, ever again. Wrong. So very, very wrong.

Pretty damn accurate. See those "bunny ears"? Torture.

Ladies - (and maybe some men who have been through similar surgeries) - have you ever worn a pad to the point where you’ve essentially got diaper rash? Yeah, that happens. Luckily, it was suggested to me that I should use a pad for incontinence, and hey buddy, those are freaking amazing. I used period pads from late June to late August, and it was super painful. From late August to date I’ve used the incontinence pads, and no diaper rashy feeling. Amazing. The period pads have a plastic-y feeling to the top, where the incontinence pads have a soft, cottony feeling. Either way, I’m much more comfortable now. Just a note, in case you’re ever in my position. Y’know, wearing a pad from late June to date. Except I fold it and stick it right where it needs to be. Gross, right? I’m so over it. This is what I’ve been living with. So this is why I call it a rockstar piercing - if I have to deal with this humiliating and disgusting piece of rubber band that causes me embarrassment on a regular basis - I get to call it whatever the fuck I want. I’m a damn rockstar for dealing with this. Until now, I’ve said nothing, and the only people aware of it were my immediate family, and when I say immediate, I mean my mother and my sister. My brother-in-law is sort of aware, and my nephews know that my butt hurts all the time.

It also matters which side of the pad the rubber band is laying on. That can potentially cause you great pain.

All the small things.

All the small things are leading me to one of the biggest things that may ever happen to me. I still don’t know all of the details, because I haven’t talked to the main surgeon yet. My MRI and consultation with the surgeon (who - I might add - is the Associate Dean at Ketchup Klinik) are on October 22. I should know more after that date, and if I am indeed an eligible candidate for the stem-cell research. Another thing that I should add is Ketchup Klinik is the #1 hospital in America for gastroenterology and colorectal surgery. I am *exactly* where I need to be (even though a ride to the main Klinik is a nearly 3 hour ride one way).

Here’s what I know about the stem-cell study so far: they will take a biopsy of my stomach fat, and they will send that fat to the lab people that will grow tissue/stem cells from that biopsy. When the tissue is ready, I will have a surgery where they will use my own tissue to fill in that space where the abscess was, and sew me up. The hope is is that it will not immediately become a problem again and I will need to be cut back open and another seton placed. One of the deciding factors to me being a proper candidate was being on humira for x amount of time before doing the surgery. When I meet the surgeon for the first time, I will have been on it for two and a half months, let alone when I actually have the surgery.

I’m really really really excited to be a part of this study. From Hippocrates to me - there may be a feasible way for doctors to safely close a rectal abscess - because right now there is none. You have to live with a seton until it stops draining. It could take years. Yes, yearS. My second surgeon told me about a guy who had one in for EIGHT years. I wanted to cry when he told me that. As I’ve already said, it’s humiliating, embarrassing, painful, and wholly uncomfortable - physically and mentally. So when they asked if I would be willing to be a part of this study I nearly screamed yes. I’m just hoping that it works (along with my entire medical team, they are all rooting for me).

I want it to happen - and be successful - because it’s a legacy for me. I may be playing a small part, but it’s a part in helping a humiliating, embarrassing, painful, and wholly uncomfortable experience for someone else to be way less than that. They might have to live with it for a short period of time...maybe they can get it down to almost no waiting period at all! but I helped to make it less shitty for another human and for me that’s just...what my life is about. If I can’t directly help my kids become functioning adults, I’ll help adults with their struggles, because lord knows that I’m struggling. I’ve said this before and I will say it again: Peer-to-peer support is proven to be more effective than professional help. What I’ve written above may not help you right now. You may be completely grossed out and wondering “Jill, what the actual fuck were you thinking by telling me that?” but you may have to go through something similar one day. When you have a digital rectal exam (and you will, don’t shy away from it, wuss) just think to yourself “Jill has these on a regular basis, nearly every time she sees a doctor, which is weekly!” When you have a colonoscopy, remember that I’m 4 ahead of you. When you have an endoscopy, I’m 3 ahead of you. If it’s shots/setting IV’s, I’m about a billion ahead of you. None of it is that bad, and you should be getting your proper checkups for your health. If you need someone to verbally walk you through it that’s not a nurse and will not bullshit you, feel free to contact me! I will give you the no bullshit guarantee!

I’m here to help. I *want* to help you. I want to tell you that it will all be ok. I know because I’ve been through it, and today it’s all ok.

xoxoxox

My Rockstar Piercing Part 1

2015-10-11T09:12:00.000-05:00

I’ve got a piercing more badass than any you’ve ever had. Or seen. Or probably have ever heard about. It's going to take me a while to tell you this story, and this story AND piercing is not for the faint-of-heart. I’ve warned you, remember that. .

Let’s begin at the beginning. I had been at Jen’s just a few weeks when I started experiencing some rectal pain. Rectal pain and crohn’s tend to go hand in hand. She drops me off at Ketchup Klinik’s local ER, I check in, get undressed, get into my gown, blah blah blah - same routine as always. THIS time - however - sticks out, because the PA (physician’s assistant) doesn’t do an exam or any tests. He just loads me up with a bunch of sweet, sweet narcotics, gives me a prescription, and sends me on my way. I call Jen to come and get me.

Jen: Well, that was quick!

Me: Yeah, dude, they did *no examinations*.

Jen: What?? None? No CT scan? No ultrasounds? Not even a digital rectal??

Me: (shaking my head) nope, none of it.

Jen: What did they give you?

Me: Dilaudid and roxy, as per usual.

Jen: Holy shit, man!

As you can tell, we’re pretty experienced with the whole ER visit thing. A visit for me usually lasts a minimum of 5 hours, and that’s whether it’s crohn’s related or mental health related. That visit was approximately 2 hours, and that’s being generous.

As nice as it was to load me up with narcotics, it did nothing for the lasting rectal pain. That just intensified as the days went on. This is mid to late April. The date is important.

I had my first appointment with my nurse-practitioner gastroenterologist in early May. I complained to her about my rectal pain. She naturally did an exam - she would have done one regardless - and noticed nothing. It hurt like hell when she did it, but she couldn’t see anything.

I made an appointment with my PCP (primary care physician) towards the end of May. He couldn’t see anything wrong, and thankfully didn’t do a digital rectal (ps - that’s when they stick their finger up there if you didn’t know). He told me there was nothing there, and that I could soak in warm water to help ease my discomfort. The pain was at a solid 8 on a scale of 10 with 10 being the worst pain.(Note - I *loathe* the pain scale, it's so insufficient because I essentially live with my pain at an 8.) He told me to go to the emergency room if I was in significant pain, because 8 is apparently not significant. He prescribed me one roxycodone per day (this is what I call an oxycodone with no tylenol in it) so I could be in pain all day long, or I could get to sleep, but I'd wake up in about four hours when it wore off.

In early June, Shannon (my nurse-practitioner, gastroenterology) called me to check on the rectal pain thing. I told her that the pain had increased dramatically. She asked if it got worse when I had a bowel movement, and I said I didn’t really know, as it hurt all the fucking time. She made an appointment with me, and told me to go to the emergency room if I was having pain.

I made another appointment with my PCP.

In the meantime, I went to the ER. Again. This time they did an exam. I’ve been CT scanned. A LOT. Like - if I were to have children, they may have tails and third eyes, a lot. I *thought* I had been CT scanned in every way that I could possibly be CT scanned...but no. I was so, so very very wrong. I don’t remember in which way it went, but they put liquid up my butt, and then an expandable balloon up there to keep all the liquid in.

They. Put. A. Balloon. And. Liquid. Up. My. Butt.

Beware.

For all that humiliation, though, the ER doctor comes back and tells me “we see some swelling, but nothing that we can stick a scalpel in.” OH RIGHT! Because you can’t stick a scalpel in it, I’m not in pain! I was loaded up with prescriptions - again - and told that for pain, I should see my gastroenterologist or my PCP. (Remember that both my gastro and PCP both told me to go to the ER for pain.) I just rolled my eyes and went to fill my prescriptions at the Instymeds machine. I tell Jen what happened and she gets pissed and says that she should have come with me, but I’m just tired and want to go home.

Then I have my first round in a Wisconsin looney bin, but not Ketchup Klinik, Holy Hospital.

I have my appointment with my primary care, he tells me there’s nothing there, and he won’t give me much for pain, because he wants me to be able to feel if something is wrong so I can go to the ER. I tell him what THEY said about getting my pain help through him, and the circle jerk that I’m sick of. He just kinda nods and shoves me out the door.

*Kicks the door on the way out*

I have my appointment with Shannon, and she does a full rectal exam, and I’m in tears. I ask her for some kind of pain help, non-narcotic, and she shuts me down and says that I should get pain help from the ER. By this time I’m seething, and tell her that I’m sick and tired of this game that they’re all playing. Why can I not get any help from any of them?? She just shrugs me off and leaves me crying.

So I steal coffee. (Not really, it’s free coffee - I just take a LOT.)

I have another episode where I absolutely cannot take the pain, and have Jen take me to the Ketchup Klinik ER. The physician’s assistant gives me a shot of dilaudid, and runs some blood tests. When the blood tests come back and show that my white blood cell count is normal, he does a digital rectal at the same time his nurse is ripping out my IV, says that he sees nothing, and he doesn’t want to give me a CT scan because I’ve just had one and that’s some intense radiation. “Like 400 times the radiation of a normal x-ray!” Well, super. WHAT THE FUCK IS WRONG WITH ME THEN? “Don’t know, Miss H, you’ll just have to see your gastroenterologist.”

*Internal screaming, much yanking of hair*

I think to myself - don’t worry, you have a colonoscopy close to home in just a few days, you’ll be just fine. By now it’s mid-June. I had the colonoscopy, and after that the pain was so intense I could barely walk.The Ketchup Klinik gastroenterologist who completed the procedure insisted that I was in remission, and that everything looked great!! down there, and that I shouldn’t be worried about anything at all! As for all that rectal pain you’re having, well - I just don’t know anything about that because I didn’t see a thing. Not. A. Thing. You are totally healthy, Jill, run through fields of flowers, friend - you are so much good there’s not enough good words to good about it! (Ps - That tiny little internal hemorrhoid that you see in the pictures may be causing some discomfort, but you’ve *had* them before! You’ve had them removed! You’re so much good!)

I don’t know if the pain had anything to do with it, but I had myself another mental health stay in Holy Hospital. It wasn’t even a full week after my colonoscopy, maybe three days max ( ← Important.) I couldn’t sit directly on my butt, but needed to participate in groups to try to get myself on some kind of even keel mentally. Even laying on the left side of my body caused exquisite pain, I didn’t know what to do. I complained to the nurses, and they would give me acetaminophen, and one night nurse did an exam - nothing. I sat on a hot pad, which was not good at all and I quickly switched to ice. When I felt the area - even after extensive icing - it was on-fire hot to the touch, and super hard, like there was something just below the skin - but the nurse said there was no redness. The night nurse didn’t touch where I was indicating, so she had no idea as to the heat radiating off of it.

Quick note - I cannot take any NSAIDS (non-steroidal anti-inflammatory drugs) - no Advil, no ibuprofen of any name (e.g. Advil, Motrin), no Aleve (naproxen sodium), no asprin, absolutely nothing over-the-counter except Tylenol (acetaminophen). That’s it. And I might as well take Tic-Tacs for all the good they do.

The next day, the nurse's aide had to force me out of bed for breakfast at 8, when for the past few days I had been up at 6. I could barely lift my tray to go sit down, and the only thing I could eat off of my tray were the diced pears. I immediately got sick to my stomach and thought they were going to come back up and so I told my nurse I felt awful and was going back to bed...she saw something on my face and told me she’d be in to check on me in the next few minutes.

She indeed was in to check on me posthaste, and brought the vitals machine with her. My blood pressure was 90/55 and dropping. For me, that’s extremely scary low, because at the time I was on blood pressure medication. Needless to say, they immediately stopped it. She was extremely concerned, and called for an actual doctor to come up ASAP. (There was a physician’s assistant that was up there daily, but this was way above his head.) She wanted me to try to eat, and went to get apple juice and graham crackers, since I thought I could stomach that (I get sick to my stomach a lot, and that snack generally sits well). By the time she came back with apple juice, the doctor was there, and determined that I needed to see the surgeon, and absolutely do not eat anything because “I’m pretty sure that you’ll be going into surgery”.

I thought to myself: Oh, YOU can see something, something that you can stick a scalpel in, with just your eyeballs, no humiliating CT scan, eh?? *rolls eyes as hard as I can, being sick*

The surgeon follows the doctor fairly quickly, and yes indeed I will be going into surgery. By 3:30 that afternoon. Well, HOLY HOSPITAL!! It took the right nurse to pay attention to me - yes - but I got the attention I needed, finally. (I would like to note, also, that that particular nurse was covering tattoos and had piercing marks on her face. Just for the record.)

Also for the record - this was less than a week after the colonoscopy. Y’know, the one that said that she saw nothing, and there was nothing wrong with me, and I was so much good I could skip through fields of flowers!

They indeed whisked me down to surgery, and I saw 375 people who were all going to be in the room with me, and they all wanted to shake my hand and explain their role, as if I’m going to remember their name and function after the propofol dump they’re about to give me. I very carefully explained to the anesthesiologist that I have a tendency to be a difficult patient, very high tolerance, like my grandmother apparently. I also have a tendency to sit up and start fighting, but I don’t remember any of that. I’ve just been told.

I’m going to stop here, because it’s getting lengthy for a blog post. I split this into two posts, which I hope will be easier to read. Fair warning, though, next week’s post may be a little too much for some people. I can obviously talk about what’s going on with me without much embarrassment to Jen and Mom, because they are who I talk to. If it’s too much, I pre-apologize, cause next week is a lot (at least I think so, for the uninitiated.) Anyway, much love!

xoxoxoxo

A Random Middle Post, Tarantino Style

2015-10-04T15:26:00.000-05:00

I didn’t even TRY to commit suicide this time. I turned myself in - first to my sister, then to the hospital - all according to my suicide prevention plan - and somehow I still get put into handcuffs. After I had been reassured by the hospital staff that I would not be handcuffed because I was completely docile and willing to get help. After all - all I could do is sit there and weep; out of will, out of energy to continue to fight, just enough left over for the overpowering guilt to apologize to Jen repeatedly.

“Procedure” the deputies tell me. Even though I have presented no danger whatsoever to anyone except myself, and followed my own procedure by letting Jen and the hospital know before I did anything stupid. I ride to the hospital in near-silence, all the while observing how completely unsafe I am. Do you know who looks at the road the least? A cop. Do you know how fast he’s driving while he’s not looking at the road in the deer-infested northwoods? Fifteen mph over the speed limit, and he’s got the cruise control on (by the way - that’s 80 mph). All of that I can clearly watch - as well as swerving over the lines repeatedly - as I’m cuffed and helpless for no reason in the backseat. I just white-knuckle my water bottle and have a silent panic attack, while I instinctively chafe against my restraints.

Don’t worry - he checked my water bottle to confirm that it was, in fact, water before we left the hospital.

I am pretty furious about how I’m ending up in another psych ward; I wanted this to happen on my own terms. Again, I voluntarily turned myself in to Jen, and we decided that it was smart to voluntarily turn me in to the hospital. I sat there for hours on end, while they tried to figure out what to do with me in conjunction with the gentleman (and he was) from the crisis center. Note to self: go straight to the hospital that has the looney bin, it’s got to be better than this. Note again: it’s marginally better to to straight to the hospital, but definitely better than the jerks at Kountry Ketchup Klinik’s ER.) The PA (physician’s assistant) Dawn, made a false statement to the Sherriff’s deputies that she and my sister (!!!) thought that I may be a flight risk. This is after I brought myself in voluntarily for treatment and haven’t moved off my gurney except to use the restroom and immediately return to said gurney.

Also? Jen would *never* say such a thing. The only reason she left is because these people were dragging their feet like they were made of boulders and she had to get home to take care of her children in a few hours. They were keeping the door to my hospital room open completely, and I would have seen/overheard such a conversation. Not to mention - Jen would never say such a thing. And I didn’t know it at the time, but if she did say such a thing, where was her signature denoting truth to such an accusation?

They couldn’t provide it.

I didn’t know I was being “chaptered” until I actually got to Holy Hospital.

I don’t know how it is in other states, but they were holding me for 72 hours. Under Chapter 51.15 I could have had charges pressed against me (essentially) if I wasn’t compliant during those 72 hours of holding. Now I just wanted to get through the 72 hours instead of working on me. I just wanted to prove that I wasn’t out to do harm.

Great - a fake face where I need help. Not that I would ever fake anything, but now I'm more concerned about the chapter holding than what is actually wrong with me.

At that time, they were taking me to a completely unfamiliar hospital - Holy Hospital - when I had packed my belongings for Ketchup Klinik, because I was a patient within their network, and they had a looney bin in the same city I was heading for. This made me nervous...really really nervous. Just about everything makes me nervous, but naturally the unknown just blows it out of the water. I had previously done research into Ketchup Klinik’s behavioral health inpatient system, but the cop took my phone away from me in the middle of my reading up on Holy Hospital’s (my guess - he did not want me to use my camera inside the car - I could clearly see the dashboard).

Regardless of the fact that you’ve already been in a looney bin, you always have that image of shuffling, drooling, straight-jacketed patients (no one has been straitjacketed in the hospitals I’ve been in...and I’ve seen some people FLIP THE FUCK OUT - they use drugs to calm them down...a lot of drugs in syringes). And I won’t lie - there are extreme cases that I cannot handle speaking to. When I find myself inpatient, there always seems to be one or two that I just cannot be around and need to avoid at all costs.

I also seem to find one or two that need my help, and I always stick to them like glue. I know the whole point of me being inpatient is for me to be my own baby and to work on my issues, but I can’t stand the sight of someone crying and no one being there to hug them. We are highly discouraged from touching each other as well as forming bonds with other patients, but I can’t stand the sight of someone rocking themselves like I do, and knowing how they’re feeling at that moment. I know that *I* want a hug when I’m at that point, so I have to dole out the hugs - I just have to.

It was very lucky for me that the doctor saw that I was obviously there voluntarily and did not need to be "chaptered". He started working on the problem at hand, which he believed to be medication related - and I agreed with him. It was kind of a strange situation, actually, because when I told him who my treating doctor was in Toledo, he kind of laughed at me, and near the end of our conversation told me that my treating doctor was his professor during medical school.

I felt like he was meant to be my doctor.

It’s been pointed out to me in just about every therapy appointment, every inpatient adventure, that I seem to be a caretaker of others. Misplaced motherhood? Maybe. In one of my more recent hospital stays, one of the therapists suggested to me that I should write a blog. Why should I open myself up to the public, so raw and so naked, in front of you all...baring for all to see my complete pain and horrible adventures with my sickening genetics? Because - she said - it’s been proven that peer to peer support is more effective than medicine and therapy. I’ve seen examples of this already (and I’m sure they’ll come up, because they’re certainly pertinent) and I know that I’ve helped at least two other people face-to-face. If I can help *just one* person with my blog, then it will be worth it.

My official diagnosis as of earlier this summer is bipolar disorder with abnormal presentation. They don’t call it “manic depression” anymore because it’s a total misnomer. I don’t go “manic” like some people think…google definition: ”showing deranged excitement or energy” hahahaa - no no no. I might be deranged, but it’s more of a JILLSMASH deranged. I’m so angry and tightly wound and completely irrational that I have no idea which way is up or how to release myself positively (even though I’ve been given some amazingly wonderful tools and am working on myself with a therapist). I talk fast. I’ve been very promiscuous in the past. Driving is not a good idea because I could kill myself and others. I reach a level of fury that I hate myself for - for no apparent reason. I have nothing to be mad at. I can point at things and say that “this” is irritating me, but no rational person would be seething at said irritation.

I go totally hulk. And I hate myself for it. Luckily - for the most part - the only person I’ve physically hurt is myself.

I have other diagnoses since then that kind of make me laugh (now) because they’re all over the board and at this moment I’m just going through classes with my therapist, one week at a time, so I can retrain my brain to (hopefully) be more rational when I’m in JILLSMASH mode. I’m on the fence about the bipolar diagnosis. Some of the drugs they have me on are for bipolar patients, and they work amazingly well. When they’ve messed with my anti-depressant without adjusting the mood-stabilizer drug, it sends me into the looney bin (that’s what happened this time.) If I am indeed bipolar, it’s an odd sort of bipolar...and remember that nearly everything is a spectrum.

At this moment, the drug cocktail that they have me on is fine with me. Am I a zombie? Yes. Does my doctor want that? No. Do I? I could not care less. I try to get through my days with the least amount of pain possible. Living with Jen is a great place to be, because her house is absolutely filled with love. When the boys get home, we talk about school, we make dinner, books are read, homework (HOMEWORK IN KINDERGARTEN IS BULLSHIT I MIGHT ADD) is worked on, and sometimes I have special art projects for them to work on. There are lots of hugs and tons of love. Jen completely understands me and is non judgemental, because of struggles she’s been through in her life.

Regardless of all of that - however - it's easiest for me to zombie through my existence at the moment. I have my schedule that I follow per therapy. Do I make it work every day? No. I try to accomplish whatever I can every day. Baby steps. You hear that a LOT in therapy - I'm saving you money!

In closing, like my dude Mark Twain said: "If it's your job to eat a frog, it's best to do it first thing in the morning. And If it's your job to eat two frogs, it's best to eat the biggest one first."

xoxoxoxo

Xanax: My Devil, My Mistress.

2015-09-27T17:39:00.000-05:00

Making the altered book is part of my therapy. You’ll hear a lot about my altered book. I’m sure I’ll be persuaded to take pictures. You can google “altered book” or “art journal” and get an idea, but know that I’m nowhere *near* as awesome as ...well, all of them are. Mine is my own, and it’s my therapy, and it’s been a lifesaver. It’s a never-ending project, and I absolutely love working on it.

In texting B, I told him what my current project was, and he said “yeah, you told me already.”

When I’m telling Jen about that text, I was pissed and frustrated, because I had absolutely no memory of telling him about my project, and this was not the first time losing memory had happened. I’d had instances of weirdness happen with her as well. I was having a waking dream of Oliver standing in my room talking to me about “mom” (Jen) going to DQ for ice cream - normally I would go with her. So I start screaming for Jen, because if I tried to stand I would likely bash my face into the wall. She didn’t answer me because she was cooking dinner for her family. Me - pissed that she’s not answering me - starts calling for “mom”, knowing that she would answer that. She comes to my door and opens it - Oliver cannot open my door - my first indicator that that was a waking dream. She said “I’ve got ten seconds - what do you want?!?!?” ...and I could not verbalize what I wanted, just stuttered out some random bullshit. Jen reminds me of this situation the next day, but it feels like it happened *weeks* ago, in addition to the fact that I barely remembered what the hell she was talking about.

Xanax. Xanax is to blame, my devil.

How the devil looks in my head. Since Bedazzled, anyway.

I opened up my folder on the computer just now, looking to write some fresh material, knowing that friends want to see a blog from me, and I want to have a backlog of stuff ready to edit before I post.

There’s an entry I do not remember writing. I look at it. It’s completely off the wall, misspellings, rantings that I would *never* say out loud (really loopy stuff)...a xanax post.

I immediately started shaking and having a mild panic attack...therefore this post becomes a xanax post. I’ll edit it without xanax, but I’m admitting here and now that I’m writing it while I’m on it.

I’m going to say bad things about it, but know that I’m an addict. I can’t be without xanax. The thought of living without it makes my blood run cold. I have two pills left in my bottle and I can’t refill for SEVEN DAYS, and that causes further anxiety. It would want to make me smoke cigarettes, but I’ve been steadily trying (really really trying) to stop smoking. I’ve only smoked when truly stressed (and once to hide the weed breath that I had). But seriously - maybe two cigarettes a week, max.

My sister tells me (and EVERYTHING that Jen says is gospel - don’t forget that) that if you take your xanax every day for seven days, it’s got it’s hooks in you.

It’s had its hooks in me since right around my first miscarriage - late 2007. A friend/coworker pointed out to me that I cried quite a bit, and she was worried about me. I would cry out of frustration on a regular basis, and unfortunately for Ape, she had to kind of hold me together while she did her (very important) job. And we didn’t even work for the same department, although she had had my position previously, so could do it backwards while sleeping. (I’m not saying that she did my work, just that she would point out ways that I could drop some stressors. She may have done an allergen check, but I digress.)

OH buddy - here’s where I feel it. It might get loopy, my typing is sucking right now.

I’ve been on the whole barrage of xanax - .25, .5, 1mg, and my (and junkies!) fav, the coveted 2 mg bar.

I've been through all of them.

Getting the bar was a mistake. I had a full bottle - like...I had gotten it filled the day before - I barely remember, cause I chewed at least four of them immediately.

When you’re on the 2 mg bars, they GUARANTEE you will be an addict. Heh. I was an addict straight out of the womb. My first drug?? Caffeine, bitches!! And then nicotine!!

The day after I got a fresh bottle of 2 mg bars, I tried to kill myself. With full intention of it being completely deadly serious, (and YOU, Dear Reader, would not be reading this, but would have attended my funeral in March 2015. Theoretically. I don’t want to make myself sound popular or anything HAHA). The fact that I got the prescription for the 2mg bars and the suicide attempt don’t have much to do with the other, other than the fact that it became easier for me to get massive amounts of xanax into my system with all the other pills I was eating. I remember stuffing a handful in my face after I had eaten two handfuls of my poison of choice. I apparently stuffed a LOT more pills in my face, and *shocker* I don’t remember that.

But that’s a story for another day. The point of me telling you this was that I tried to kill myself, and once again xanax was involved.

Xanax has amnestic properties, as well as full-out anterograde amnesia. Remember when I said that I’ve told B about things and then had absolutely no memory of it? This is how wikipedia defines it: Anterograde amnesia is a loss of the ability to create new memories after the event that caused the amnesia, leading to a partial or complete inability to recall the recent past, while long-term memories from before the event remain intact.

I have chunks and pieces of memories after I swallowed all those pills in March. Since then, every time I take a dose of xanax (even my small ones), I essentially brown out. It doesn’t matter that I’m taking therapeutic doses. It matters that I’m taking xanax, and it will lead right to the part of my brain that is completely wiped by that drug. Do I still take it? You betcha! Every day. Apparently, too much on some days, or I wouldn’t find myself in the predicament of having only two tablets and a whole week to go. Where did those tabs go? I’m guessing - right now - that I took them after I had already taken some xanax, and I have absolutely no memory of doing so. Since I take them in my bedroom, I have no way of knowing that’s what I’m doing.

I have no real wrap-up for this. I’m not going to be Judgy McJudgerson and stand on my soapbox and tell you that “XANAX IS WRONG AND YOU SHOULD STOP IT RIGHT NOW!” because I’m still on it - every single day. It can help. It *did* and *does* help me, regardless of the fact that I gray-out or brown-out some of my life. Right now, there’s not a ton of my life that I’d really like to remember (other than being with my family, I do love that, but ultimately I’m not happy). If you’re *considering* taking the drug, make sure you read up on it, and don’t let your doctor just force it on you - which they likely will not if you voice concerns - and VOICE YOUR CONCERNS. It’s important that YOU be a part of YOUR health care team. You should be the Captain, not the doctor.

xoxoxoxoxo