Where I’ve Been

I haven’t posted in over a year. I know! It surprises me too! I was so good about writing for a while, and then poof, I disappeared!

Well, I’d say I had a pretty good reason, but I don’t know if that’s 100% true. For a while, I did. For a while, I was struggling with incredible fatigue, different from any other fatigue I have ever experienced. After that… Brain fog.

In the last year, I have received a number of diagnoses that don’t, for once, have to do with my mental health. Life is crazy like that… Just when you think you’re getting one thing under control, everything spins madly out. But to that, all I can do is shrug my shoulders. No, I haven’t asked for any of it (who would?) but I’m also not asking why these things landed on me. Statistics have to come from somewhere, don’t they?

Bullet points of the last year:

  • Diagnosed with chronic Lyme disease (the diagnosis is questionable, however)
  • Had a PICC (peripherally-inserted central catheter) line placed on August 1st
  • Diagnosed with dysautonomia, a disorder of the autonomic nervous function (subtype: postural orthostatic tachycardia syndrome, or POTS)
  • Clinically diagnosed with Ehlers Danlos Syndrome (EDS), a genetic disorder affecting connective tissue
  • Diagnosed with severe gastroparesis, or delayed emptying of the stomach, characterized by intense, intractable nausea and regurgitation as well as an impaired ability to absorb nutrients
  • Had a GJ tube surgically placed (the GJ, or gastrojejunostomy, delivers nutrients to my small intestine, directly bypassing my paralyzed stomach
  • Got laid off (no hard feelings there–I’ve been waiting for it, and I was only one of many!)
  • PICC pulled on April 19th (yesterday!)
  • Port (or Port-a-Cath) will be placed next Tuesday, April 25th

I am hoping to write quite a bit about all of these things, as well as my life in general. Stay tuned!


Day 18: Inpatient / Day 1: Recovery

That’s right folks, in roughly an hour and a half, I will be discharging from the hospital! In two and a half hours, I will be on my way to the airport, and in five and a half hours, I will be taking off. Roughly three hours after that, I’ll be touching down!

Monday, I was taken by surprise when my doctor said that we should plan discharge. Because I’m going home and not to a program, they wanted to keep me here for four to six weeks, but my body pretty much said, “Nope, too strong for you!!” For fear of a sudden insurance denial or retroactive denial, discharge was set for Friday. I mean, it’s great news that my body is so resilient! But truth be told, not a single person involved is ready to send me home.

Sending me to a program would be ideal, but honestly, I’m not sure if I would make it out the other side. Right now, I’m full of hope and motivation and ideas for my future, and I know that would not be so if I spent three or more months in a program. It would be months of bitching about group therapy, months of irritating my parents, months of craving their visits, months of mental torture, months of uncertainty, and no guarantee that I would still want to recover on the other side. It’s only been a very, very short 18 days, but I want to recover. I’ve never wanted to recover when I’ve left treatment before. Hell, I’ve never wanted to recover after being in treatment for 18 days before! I lose the desire quickly. I didn’t this time.

Of course I’m scared. I’m terrified. Just because I have hope and motivation doesn’t mean that I don’t have the eating disorder gremlin in my head. I type all of this, set on recovery and where it will take me, while a little part of my brain is still excited that I didn’t gain as much as my doctor and dietician expected and hoped. But I’m squashing that, because I still have weight to gain–my mind can’t recover if my body hasn’t–and even though it’ll be a massive struggle, I’m geared up to take that on. I want to go back to school. I want to get my MSW. I want to volunteer. I want to get married. I want my family to be proud of me. Can those things happen if I’m malnourished? Sure, maybe, but will it be worth it? Absolutely not. I want to be present for all of those things. No one is fully present when their eating disorder is dominating them.

My mantra will be, “I want more than this”. I’ve heard people say, “I deserve more than this”, but I don’t always believe I deserve more. I’m working on that. But I want more. I need to keep that close to my heart.

During my last therapy session, my doctor came in with a bag of keychain stones, and I closed my eyes and fished out “Hope”. It couldn’t have been better. When I get back to my apartment, I’m going to find a paint pen and write my mantra on the back of it, so that I carry both with me. Cheesy? Yeah, cheesy as hell. It’s the kind of shit you do in group therapy (and by that, I really mean, it’s the shit I refuse to do in group therapy). But this is coming from me, motivated by me, and feels a hell of a lot more genuine. And that is what will push me through.

Deep breaths and baby steps. I want more than this.

Inpatient: Day 13

I’ve been having a battery of tests run–not just the daily labs, but outside tests as well, mentioned in my other posts. So, an update on my medical state…

Phosphorous: After doubling my phosphate supplement, my phosphorous levels are back to normal, so all is well on that front!

Supplements: Unbeknownst to me, my calcium supplements had been doubled, but are now back to normal, once-daily dosages. My magnesium levels have remained solid, despite only once-daily supplements (my doctor always prescribes 3x/day, but I begged off and once has been enough). She started me on what seems like an unnecessarily large dose of Omega-3s, but it can’t hurt! I am also still on 3x/daily Miralax. THAT’S really crappy.

Albumin: It was really crappy but is starting to look less crappy. I don’t know the numbers, but my doctor has mentioned IV albumin if the numbers don’t start to improve with a higher protein diet. (Since typing this, I learned that my albumin levels were up today, so… That’s good!)

Allergy testing: I had blood tests done to do initial allergy testing, but my allergist said that those aren’t always reliable–if something comes back positive, then I am 100% allergic to it, but a negative result still means about a 30% chance that I’m allergic to it. Good news: I’ve tested negative for everything. Bad news: my (regular) doctor says that, because my albumin levels are so low/were even lower when the allergy test was done, she’s not surprised that everything has come back negative, because I don’t have enough protein in my blood to react properly to the testing (or something like that… I didn’t question it). It’s more likely that there’s at least a 50% chance that I could still be allergic to the things I tested negative for. So, I still wear the Red Badge of Peanut Allergy, until I can have a scratch-test done, which is not done in the hospital.

Endoscopy/colonoscopy: Good news: All of the biopsies came back negative. Bittersweet news: I have gastritis from restriction and acid reflux. That explains some of the bloating and stomach pain.

Gastric emptying study: I had to eat a radioactive sandwich with gloves on! I went down to nuclear med at 8:15, ate the superpowered sandwich, leaned against a machine that showed my bright white stomach, waited 90 minutes, then went back downstairs to nuclear med and learned against a machine that showed my still-bright white stomach and some bright white intestines. My gastroenterologist likes for there to be more in the intestines than there was, so gastroparesis it is. Luckily, it’s not severe! There’s an antibiotic that, at a very low dose 3x/day, has been proven to help GP, so she started me on that and my doctor said that I should start having relief from the bloating. Maybe it’s a little bit of a placebo, but I do think it’s helping a little.

The diagnosis of GP is really bittersweet. The condition is generally chronic, but I believe that my GP is caused by restriction and will eventually move at a rate appropriate to the amount of food that I am eating. There may be a chance that it won’t improve, indicated by the symptoms I was having when I was eating an amount that my stomach was used to, but I’m hopeful! A friend said that hers resolved with proper nutrition so I am fairly certain that will happen to me!

Sleep: After pushing one of my medications closer to my ideal bedtime, I fell asleep easier last night, so let’s hope that continues (it’s been a struggle!!). Also, NIGHT. SWEATS. But that’s either my hormones or my metabolism turning on, either one I will welcome happily back into my life!

Mobility: I am still only allowed 10 minutes of walking a day, which I typically don’t use–if I save my walk, then I can walk with a CNA/nurse if I need to get a salt packet, coffee creamer, the bathroom key, towels, etc. If I use my walk, then we’d have to wait for someone to bring them, which can sometimes take a little while. Everywhere else, I have to be in a wheelchair. However, I am allowed to shower standing up, as long as my HR doesn’t increase 20+ points upon standing!

Obs: Still on 3/1, but tomorrow, that should be decreased to one hour after meals and that’s IT!! I’ve really enjoyed the company of some of the CNAs, but I’m always relieved when my obs are over.

I’m trying very hard not to compare myself to the other ED patient here, but it’s hard not to. She can walk wherever, can go to the cafeteria with her parents for dinner every day, has no obs, and has only been here for four days longer than I have. I also see her as significantly more underweight, but of course, ~ED glasses~, so… who the hell knows. But I need to keep in mind that she’s had the intention of moving to RTC, so maybe they’ve moved her faster, I don’t know. My head can’t compute why I don’t have free roaming privileges (well, roaming with an accompaniment) or cafeteria privileges yet, but this is MY recovery, not hers… Etc etc. Plus, her business is not any of my freaking business. Sheesh. (Except we share a wall and I can sometimes hear what’s said over there, and I see her walkin all over, but… Details).

Today is the first day that I’ve struggled with wanting to go home. I do have to admit that it really was an eating disorder impulse, though. After taking a nap and chatting with the boyfriend as well as the parents, I feel much better and am ready to take on another day tomorrow.

I have my team meeting tomorrow, which I’m a little anxious about, I suppose. Discharge dates will be discussed, and I know that I will need to defend my reasons for discharging to outpatient instead of RTC or even PHP. My parents helped me come up with some ideas for meals that I can easily manage, and I’ll continue to do that with both my dietician here and my dietician at home. Ideally, I’d like to become more comfortable with cooking, but I’m really setting out the basic, “This is exactly what I know I am 100% capable of doing” plan. I will definitely brainstorm some more complicated things as well though, so that my team doesn’t think that I plan to discharge and become complacent with total safety.

I’ll update after tomorrow’s meeting, with more of a “this is how things are mentally” than “here’s my medical chart”. But I like to write it down!

As a side note, my new shampoo and the water here are doing nice things to my hair (too soon to see healthier hair from a healthier diet… Sorry! Also, I know I need a haircut, family. I’ll get on that.)

Photo on 3-18-16 at 10.02 PM

Inpatient: Day 10

I am excited. (And nervous and a little scared, but excited).

I’m excited about living my life. I’m also very tired of talking about it, and pushing my motivation around, trying to describe it in sixteen different ways, because the dozens of times I’ve talked about it haven’t been quite enough. I’m frustrated that people don’t take my motivation seriously, but part of that frustration stems from the insecurity that comes from not being trusted. I wouldn’t trust me either, so my brain is conflicted and confused.

I know that stepping from inpatient to outpatient is a HUGE step, but it’s what I need to do. I made the choice to come here based off of what I know about myself, and I am making the choice to go home (instead of going to a residential or PHP), also because of what I know about myself. I’ve learned a lot. I trust me, Jenny, but I don’t trust my eating disorder. No one should. I have no right to expect trust from anyone and it’s hard to ask for it anyway.

Putting that frustration aside, however, my brain is excited. I am excited for my future. I’m excited that it’s within reach, and that it’s dictated by me. Yes, work is precarious and that is not a guarantee, but my future with the Women’s Center, volunteering, and clinical social work are all within reach if I work for it.

My doctor said that I might be discharged as soon as next week, because my insurance will probably start to grumble about being here when my labs and my vitals are stable. I’ve talked a big game about “proving the doctors wrong” and being discharged after only two weeks after being told four to six weeks, but the thought kind of scares me. Two weeks feels very fast, too fast to have as much distance from my eating disorder as I’d like… But my eating disorder is making me feel very odd about it. Part of me is offended that I’m “not sick” (which is a GOOD thing, if only my brain would realize it), and I really, really can’t deny that there’s a teeny tiny eating disorder voice that wants me to go home ASAP so that I get to make the choices.

I’m not saying that the eating disorder voice is enticing me to go home and go back to old behaviors–I will fight the motherfucker tooth and nail because I am tired of that shit. Thinking about waking up at 3am every day is overwhelming and not something I want to do, so luckily that makes me less likely to go back to that. Thinking about making the effort to have a supported dinner every night with my boyfriend is not overwhelming, and is something that I want to do. But thinking about making the effort to have a supported lunch every day is exhausting. I loved taking naps in my car during my lunch break every day. When I think about going back to work, the ideal scenario feels like eating lunch at my desk and napping in my car, which is isolating and very easy to cheat or slip on. When I think about breakfast, I think about eating a Quest or maybe a Clif bar, neither of which is the ideal number of calories nor the ideal flexibility if I want to truly recover. (Although… Oatmeal sounds really good too…)

Maybe it seems particularly exhausting because I need a nap (I couldn’t get to sleep last night until around 2am, woof) but I definitely don’t feel ready to come home. That’s a bizarre sensation. I’ve always been chomping at the bit to come home! But just a little more time here can only do me good. I’m insecure about feeling “too big” for this level of care, but that idea can shove it. If I’m not going to go to residential, then I will sit with that feeling, deal with it, tell it to go away, and continue to eat. And I will go home and follow through with every supported meal that I have available to me, no matter how “exhausting” it feels. Because you know what’s more exhausting? Dying of anorexia. And, like I said, dying is not conducive to the rest of my life.

I’m still determined and excited to live.

Inpatient: Week Two

I’m a few hours early, but here I am, rounding out the end of my first week of inpatient. Anywhere from one to five weeks left… Let’s just see how much butt I can kick between now and then!

Today I got poked and stuck and poked and stuck again. I was woken by a blood draw, then my blood sugar tanked around 11 so I had to be poked to have my blood tested. A few hours after that, my doctor decided to start an IV because my phosphorous and albumin levels have started to drop and I’m prepping for my endoscopy/colonoscopy (yuck) so they wanted to make sure my potassium and fluids don’t drop (because then my phosphorous will drop as well, and I kinda need that). It took 3 people to get the IV in, as well as 3 needle sticks, blood in places it didn’t need to be (but they got it out of my blanket immediately, phew), one blown vein, and one sweaty patient by the time it was over. Since then, I have had two more sugar tests and one blood draw that didn’t go well and took two sticks. I should have one more sugar test before the day is done and one more tomorrow, then hopefully I’ll be done with the blood sugar tests.

A few hours after the IV was started, I had to start drinking the prep (I… don’t even want to talk about that part) and I’ve been biding my time, waiting until I can sleep! It’s 10:30 and I’m sleepy, but… Not time to sleep yet!

Good news: I got my obs lowered today! I was on 24 hour watch, but now I’m on 3/1 (someone is with me during meals and snacks, then 3 hours after meals and 1 hour after snacks). 3/1 doesn’t leave me alone for very much of the day, but I’ll be alone for about an hour before each meal and (wait for it…) FOR SLEEPING! I get to sleep alone now! Door closed, lights off, alllllll to myself 🙂 That’ll be so nice.

I also found out that my room is one of two on the floor that has a shower in it. Some have sinks, some have sinks and toilets, but mine and one other are the only two with showers, so I feel lucky with that.

I also feel as though time moves SO much faster here than it did at ACUTE! I don’t know if the rules are more lax (but absolutely not in a way that harms me, don’t worry), if I like the aids more, or I just know how to better occupy my time, but either way, I am NOT complaining! I think a lot has to do with being less shy overall. I’m less afraid to just sit in the room and watch TV while the aid sits, and I’m not too uncomfortable doing so.

Con: I cannot get my sweatshirt off because of my IV. That’s okay. A few more trips to the bathroom and then it’s bedtime.

I need to keep my motivation. I need it so badly. I WANT it so badly. For once, I have a future in mind that is real and permanent and within reach. The last few times, I just wanted to get out of school, or get a job. Now, I want to get back to my amazingly supportive boyfriend and the volunteering that I not only LOVE, but am so passionate about and will help guide me towards my future in clinical social work. It’s so tangible. I know that my boyfriend is not a guarantee, but my future is a guarantee if I want it to be. And I do. I want my boyfriend in my future, but I also have a future in place that depends on me and my recovery. Honestly, it’s more important to me than my illness, which is why I decided to come here and am going to see this through. I may not be going back to residential, but that didn’t work for me before. I have hope for this time. So much hope. A week into my last inpatient stay? It was drifting away. Not this time. I’m sure as hell not going to let it.

I had so much going for me last time that is still very much in place for me this time: my family. Thank goodness for them. If I didn’t have them, then I couldn’t do any of this. They have hope for me too, and that can help carry me through on tough days. I’ve also got my Poppy. I need to get better so I can be with her all the time!

Well, it’s hitting midnight here, which means I’m NPO until after my procedure. I should try to get some sleep–beautiful, blissful alone time!!! My aunt will be visiting on Wednesday, which I’m really looking forward to. But, to be honest… I’m really looking forward to eating after my procedure!!!

Update food-wise: body image is difficult because I’m so bloated, but I know that’s guaranteed with refeeding. My doctor mentioned that I’m on 2200 calories now, which really did freak me out, but not enough to stick… Yet. I don’t know if my calories will stay there or not, but it probably depends on my weight and such. Either way, trust the doctors, and trust the process. I have a life to live, and I’m going to choose it–not my eating disorder!

Here’s a shot of me with my friend for the day.

Photo on 3-14-16 at 11.27 PMGotta keep up the sass, no?

Inpatient: Day Two

Yesterday, I admitted to an eating disorder medical stabilization unit in California.

Ohhh boy. It’s going to be a fight. But I’m going to fight hard.

It’s only my first full day and I feel horrible. For one thing, someone keeps fucking with my thermostat and turning it to EIGHTY. I spent the night in and out of sleep because I was sweating so badly–turns out it was because the heat was on full blast all night! I have to beg them to turn it to 65 the second I start to feel warm.

I also feel drugged as hell. Just completely out of it, my eyes not adjusting to what I’m seeing, and my stomach is roughly 3 times the size it should be. I woke up thinking, “Surely I haven’t eaten enough to be this bloated…” but then I remembered the slew of vitamins my doctor put me on. My stomach does NOT like that shit (especially magnesium, which I’m supposed to take 3x a day) so that’s not going to work.

When I had my phone interview, I told them I weighed whatever I weighed then, and I’m absolutely convinced that I’m harboring enough water and food weight where they’re going to feel like I tricked them into being admitted.

I’m anxious about the refeeding process. I honestly don’t think that they’re doing it quite right. Generally, people lose weight during the first few days of refeeding, but I’m eating so much more than I’ve EVER eaten during the first stages of refeeding. My doctor assured me that I’d deal with refeeding syndrome, and now I know why–because they’re not doing it slowly enough!!

I shouldn’t complain though. The faster I do this, the faster I get out of here and kick butt on my own. They aren’t going to discharge me after a few days just because my weight’s shot up–they expect that, because when you’re drinking as little as I was, your weight SHOULD shoot up once you’re rehydrated. But based off of what I’ve seen in the past day, I really think their estimate of 4 to 6 weeks is an overshoot and I’ll be out of here in 2 weeks. I just truly don’t believe I’m sick enough to need to be hospitalized. Do I want this? Yes. I want to get back on a regular eating schedule. But I feel like I’m taking advantage of the doctor who admitted me… My paperwork said “anorexia nervosa low BMI” and “urgent” but I feel like I’m just pulling the wool over their eyes. But part of that belief is my eating disorder talking. It’ll be good to talk to the doctor and my therapist and be reassured one way or the other (no, I don’t want to hear “yeah, you don’t need to be here” but at least I won’t be questioning myself).

This was a disjointed mess of thoughts. Geez.

Also, I am very ready to get to choose what I eat. Yesterday’s lunch was boiled chicken, boiled carrots, boiled green beans, soup, an apple, and soy milk. Dinner was boiled peas, a weird slab of dry turkey, a wheat roll, soy milk, and pineapple. Snack was string cheese and grapes that somehow tasted like barbecue sauce. Breakfast this morning was a serving of cornflakes, soy milk, and pineapple (and I get coffee!).

Note to self: maybe the refeeding process is normal here, just spread throughout the day a little differently than at ACUTE. Breakfast at ACUTE even at the very beginning would be turkey sausage, a serving of cornflakes, a serving of rice krispies, cottage cheese, soy milk, and fruit. That’s a MASSIVE breakfast that I did not have to suffer through.

Second note to self: TRUST THE DOCTORS AND TRUST THE PROCESS. They are the experts, not me.

New Year, New Goals, and A “New You”

Ah, this time of year is just splendid, is it not? All of the decorations are being pulled down, and the holiday goodies are being stripped off the shelves. In their place go the diet ads, the diet foods, and the body shaming that this country cannot escape, despite the rise in body positivity in the most recent years. “Here!” stores yell. “Remember those boxes of truffles that used to be on these endcaps? How about scales and exercise equipment instead?”

Every single year, we’re plagued with New Year’s resolutions to get fit or healthy or to lose weight. People pile into the gyms to soon be picked off by a good old case of the fuckits. People start exercising, start dieting, and promise that this will be the year.

Just like so many body positive people, I am here to say FUCK ALL OF IT.

And I’m not even here to say that people shouldn’t change their lifestyle by exercising or eating better—I’m just skeptical because… Why the first of the year? Why not last December? October? Why not even January 2015?

I’m asking myself the same question. I’m guilty of setting goals that aren’t SMART. Yep, I learned that acronym in treatment, and I’m bringing it up. To avoid disappointment or just a complete lack of success, goals need to abide by the SMART rules:


Setting a goal to “get healthy” is a load of media-fraught crap. Say my goal would be to “work on my recovery”. Let’s change “work on my recovery” and make it SMART. I’m going to take these out of order for the sake of clarifying a goal.

Instead of saying that I want to work on my recovery, a SMART goal would be: “I would like to work on my recovery by reaching my minimum goal weight by the end of the year.” I made the goal specific and measurable by determining an exact weight goal, and the goal is achievable because I can easily gain the weight by the end of the year (which is, of course, the timely aspect of the goal). The goal is realistic because I do believe I have the dedication to achieve my goal.

In general, I don’t like setting a New Year’s resolution. I joke that mine is to just “stay alive”, and some years that’s been more of a dedicated goal than others (kidding. Sort of). And a goal that I’ve carried with me throughout my life is to be content—which is not so much a goal as it is a soft place to be for as long as I can.

So, yes, I hope I will be “getting healthy!!!” this year. But there’s so much more to that than many may think.