Admissions and Deferrals

10b40aca81f526f1a0945e315101192aThe call came on Friday afternoon, there treatment facility is recommending their highest level of care: Partial Hospitalization. I am both thankful and horrified. I know I need to get better but since when did I get sick enough to barely get medically cleared enough for the most intensive outpatient program available to ED patients?

The obstacles now: figuring out my work situation (I work full time) and get everything sorted out with FMLA and time off and money and insurance and admission dates, oh and the most challenging obstacle: figuring out some kind of plausible lie so that my whole (very gossipy) office doesn’t get into my business. That last one is by far the most challenging. But, I have to do what is best for me no matter what.

My ED has been just positively TERRIBLE the last few days since I heard from the treatment center and it doesn’t help that my body is almost screaming for food (it’s in one of its cycles where after I have been restricting for so long that my body starts to tear me down mentally to try and get food) but I can’t give in because my ED is just so much stronger than normal. I think it has something to do with knowing it is about to have to eat that makes my ED stronger, just trying to prove that I need to retreat from this “recovery” and run to save myself and it is taking every ounce of my being to keep going and keep seeking out treatment as the admission process progresses.

With this also came the very real realization: I am going to have to forfeit my marathons- Chicago and Marine Corps. I am so depressed I don’t even want to get out of bed when I think about it, I just want to sleep forever. I know for non-runners it’s impossible to understand why someone would want to run or run 26.2 miles for fun but for me it’s a huge part of my life and I feel broken and dead knowing I will have to defer those in the next few days. That’s all I want to say about that right now; maybe later I’ll post more about the process, training, what I look forward to about next year but right now I just don’t feel anything other than grief and numbness.

Maybe I should talk to my doctor, maybe the lows have something to do with the meds I am on but this blow of losing my marathons just feels like the last bit of me has been killed by the ED and honestly, I am starting to feel too tired to fight it anymore even though I am closer than ever to treatment.

So that’s where I am at. I’ve been quiet on here lately just because everything has kind of been in a standstill until I found out from the center and because I just haven’t wanted to deal with people in person or online as I processed this marathon thing, still just feeling numb and isolated but I’m trying to make the effort. My doctor is checking in weekly so I think she is set to call tomorrow or Tuesday but since i need some paperwork for her to fill out for treatment and my marathons I have to call tomorrow either way. I am going to go to HR first thing too about my benefits and time off for treatment and then call the Center. I guess I also have to deal with Chicago and Marine Corps Marathon organizers, idk.

Dear Ed, You. Were. Wrong. (Telling dr #2)

Yesterday I was worried, immensely worried, about telling my podiatrist about my eating disorder (I feel so old having a podiatrist hahah). I am still really, REALLY uncomfortable saying it out loud to people who don’t already know- probably has something to do with the perfectionist part of me which also helped ingrain this beast in the fibers of my being. But, I had to tell him because my feet are almost always numb, my injuries have been less than healing and I get oddly injured a lot. (Part of getting injured a lot is just the real me, I don’t really always stop and think when I am deep into my bazillion of activities but not all the injuries are accountable from that).

Fact: I told him.
Fact: I was nervous as all hell
Fact: The nurse said my drop in weight was “definitely drastic and noticeable”
         (all I thought was “well, to one of us it is”)
Fact: Dr. C (we will call him) was really concerned when I told him I had to stop running because of “other things”
Fact: Dr. C was even more concerned when I was quiet and nervous (two things I am never when I am there)

Fact: When I told Dr. C, he looked at me and said “you know, that’s actually a LOT more common than you think” and told me if he knows anyone who can beat this and get better it’s me.

Hey, ED: YOU WERE WRONG. He didn’t judge me, he didn’t even flinch, he cared, he showed compassion, he didn’t think I was crazy, he didn’t treat me differently, he didn’t do anything other than be immensely supportive. He told me to call if I needed anything even if it wasn’t related to my feet, he told me that if the treatment center needed anything to just call and he will get it done, he told me I CAN SURVIVE THIS. He joked with me, he made me feel comfortable and you know what, ED, YOU WERE WRONG ABOUT IT ALL.ALL of it, ED, because you know what? HE PROMISED HE WOULD STILL FIX MY FEET SO I CAN RUN.

Although he said I need to continue to take the time off that I’ve been doing, especially when he realized how sick I am and when I told him the complications I am having. But he promised he would still get me back to my marathons. And I trust him. I trust him more than any other doctor (although my Nurse Practitioner is an angel and I trust her too now, Dr. C was the only doctor I trusted for a very very very long time).

Deep down I knew he would be supportive, I mean only a Grinch would be rude to your face. Plus, seriously, Dr. C has known me before I was skinny, before I started running, before a lot of things. He has never once made me feel crazy (and seriously, I have had crazy injuries), stupid, ridiculous, or anything negative. He fixes the issues, he jokes with me, he thinks my running is amazing and he said “You run more than any person I have ever met”– BEST. RUNNER. COMPLIMENT!! πŸ™‚ πŸ™‚ πŸ™‚ πŸ™‚ πŸ™‚

So moral of the story: My ED is NOT always right, and I’m starting to think maybe it’s wrong more than right (?) Dr. C and my Nurse Practitioner are medical professionals and neither have taken my fears and dismissed me or them, they’ve done the opposite and have both showed genuine human concern, not just the your-my-patient-I-have-to-“care” disposition. And telling Dr. C was a HUGE relief, I trust him enough to know that no matter what I can count on him to support me, get me back running and to not treat me differently (my biggest fear). Also, My mom and sister were right (PS. Totally making a post later about my AMAZING little sister, we are best friends and she was texting me when I was nervous yesterday and made me feel infinitely better).

Still, you never know how people will respond but what I am starting to learn is the people you have in your life that are worth telling also think you are worth enough to be alive, happy and healthy and when they realize you need help and support it is instinctive for them to stand beside you and help you get there.

So, Dr. C. if you ever read this: Thank you. You put the awesome in awesomesauce and are perhaps the best doctor I have come to know. Best runner compliment ever: made. my. day. but your reaction to my eating disorder was exactly what I needed and for that there are no words that can express my gratitude. PS. When I make my running comeback: get ready because I am aiming for… an ULTRA and a Triathlon!!!!

And mom and little sis: *mumbles* Youwereright. SSsshhhhhhhh. πŸ™‚ ❀

Grapes & Gratitude

I made it through my doctor’s appointment and survived the encounter with… The Scale. Seriously, words cannot express my anxiety around scales and knowing my weight. On one hand, I want to know (but really, I think it’s the ED part of me that wants to know because I want the number to be lower); on the other hand, I don’t want to know (this part I think is the real me because it is the part that is scared of the self-hatred and self-harm thoughts if the number goes up). So yeah, it’s a complicated relationship and it won’t end well either way because either the ED part of me gets stronger and more satisfied or the real me gets beat up and bullied by it.

Today my ED was happy. VERY happy. I, however, was more than a bit ashamed of the happy thoughts flooding my body after seeing the drop in weight again. I could soon reach underweight status, my potassium is so low my doctor looked me in the eye and said “you are at risk of heart failure”, I can’t run off my anxiety, frustration or fear, I am too tired and disoriented to carry on conversation after a few hours of being awake. I am dying and yet, I feel happiness for losing weight but I also feel guilt for feeling the happiness. I am infinitely messed up, trapped and terrified.

However, I did actually have some REAL ME happiness today too. The kind that makes the ED part of me angry, loud and mad but only because it means that part of me is slowly being attacked by the old, happy, me. Today, I experienced two things: Grapes and Gratitude. Let’s start with gratitude.

I have from the get-go had so much respect and gratitude for my Nurse Practitioner at the doctor’s office. I always see her and have since I started going to this practice and she managed to get my trust (something that is very hard for medical professionals to do since my whole stomach debacle) enough to make me feel like I could trust her with my deep dark ED secret. And when I did go and tell her about it, she was nothing short of absolutely amazing, caring, concerned, trusting and non-judgmental. As I progress toward getting into treatment she has been so supportive and continues to be both honest but caring at the same time, never blaming me but instead working with me to try and figure out a solution for now until I can get to the psychologist, psychiatrists and other therapists. And perhaps what I am the MOST grateful for, she has never once made me feel like I did this to myself, never once made me feel like anything she said was condescending and never once made me feel like I am not sick. So yeah, complete and utter gratitude for her. I am, however, petrified because next time I go… I have to see the Physician Asst. instead because my amazing NP is going on maternity leave. She promises to be back soon and that the PA is stellar (she said this at two different appts so I am taking comfort in that she reiterated it) and said that she really likes her, herself. I, however, am scared to death. But still, I am so gracious for my NP and grateful that she warned me and talked to me about it before it happens so that I am not overwhelmed with surprise next time and she let me know she would talk to the PA about everything before she leaves too. Woo!

Also at the appointment she scared me to death when the ER, hospital and my horrifyingly low potassium levels were brought up. I don’t want a heart attack or to go into heart failure. I don’t want to die, that’s why I asked for help. Yet, I am on the verge of death. We had a very critical and terrifying conversation about eating more. I explained all my fears and we decided that trying to getΒ  more fruit and veggies would be easier (she said she prefers fruits because I need more nutrients they offer and my 1 safe food is a veggie πŸ˜‰ ) Until about 4 months ago there was one other vegetable and one fruit that was “semi-safe” but only in very limited quantities to ED. Today, I promised I would try and eat more and I am so gracious for all my NP’s help and support (in addition to my family) that I really did want to try and overcome my horrid ED thoughts which brings me to: grapes.

Seriously, I have been CRAVINGGGGGG grapes for weeks now. So after my appointment I went to Publix (best grocery store ever!) and the anxiety was so bad I had to call my mom on the way in and ask if grapes really were healthy and okay to eat. After she confirmed that and we talked about the appointment I knew the anxiety was only going to get worse. It’s kinda like when you skydive, the longer you sit on the edge of the plane the harder it is to convince yourself to jump so I went in, got a small produce bag (buying the whole thing of grapes like my mom suggested made me cry just thinking about it) and I just opened one of the bags and took a stem of the grapes and put it in the produce bag and tied it shut. I think I only tied it so I couldn’t put them back haha.

I am sure I looked like a crazy person, I called my mom and asked if grapes were healthy. I am a twenty-something grown-up lol I should know this; but when your brain lies to you for so long it gets to the point you don’t know what’s real and what’s not. Then I got in the car with my “unsafe” grapes. I knew I couldn’t just go home and eat the grapes because I knew my ED would get the best of me so I took a handful and as I drove I ate the first one. It was SO. DARN. GOOD. Cold and crisp on the outside and juicy and delish on the inside! The taste was seriously the best grape I have probably ever had! ED me was having a FIT and berating me but I ate a second one and eventually finished the whole handful! It’s not a lot- I know- but I was feeling full and didn’t want to make it worse. Also, I had arrived at my location– the make up store. I needed some new make up so I went in, went to the lady and asked her to demo the kind I wanted to try and it worked. Omgosh at first I could barely hear her over the ED thoughts but after a bit ED me gave up on getting me to purge the grapes AND I bought some new make up after I had a fabulous make over.

And that, even though it’s not a lot,Β  is my first REAL RECOVERY WIN!!!!

But seriously, my NP is the bomb dot com. LOVE her and I am still freaking out over her leave of absence but she hasn’t led me astray yet and I have toΒ  believe the PA will be just as good.

Confession

One day I’d like to be able to go to the doctor without crying about it for a week because I am so scared of getting on the scale and what I’ll do if it goes up. 

When “Eating Disorder” becomes a description

Maybe it’s a double standard or me being overly dramatic (a word that has never been used to describe me) but on Tuesday I picked up a letter from my doctor to clear me medically for an ED treatment program and as I read the letter it was like being punched in the gut. Why? Not because the letter was mean or harsh or anything like that but rather it was because of the words ‘eating disorder’. They were used as a description and it was like this whole thing went from “an eating disorder” to “her eating disorder”. My eating disorder. MY. MINE. Like it is officially a part of me and honestly, I am not sure how I feel about how raw and real that is.

Now, I have (countless) times written on here I have an ED, used the words and typed them into Google but until 2 weeks ago I hadn’t ever said the words out loud and actually, when I came clean with my doctor I didn’t even say “eating disorder” I just described my actions and thoughts. Telling my best friend on Monday (last week) was the first time I ever said “I have been diagnosed with an eating disorder” but even then it was an illness, an invader, a foreigner. But “her eating disorder” just makes official that this is my disease, I have this, it is inside me, tearing me apart. It’s no longer a third party but rather it is ingrained in me, has become part (or most of) who I am, and is officially no longer something I can just brush off as me being a “hypochondriac” or “not sick enough for”.

And that’s a hard pill to swallow ( and worse than that terrible liquid potassium chloride I had to take yesterday bc of my terrifyingly low potassium levels). I mean it’s not like I wasn’t expecting those exact words in the letter because tbh, of course I was. I mean I have an eating disorder I’m not delusional about everything but still I still feel scared, raw and vulnerable. Vulnerable is the worst.

I think seeing it also solidified that I am going to have to start using it to describe myself in relation to my health. This will have to start sooner rather than later too and not just with the treatment center (who I have also managed to only say those words out loud to once as well) but also because next week I have to go to my fave doctor (totally serious). He is my amazingggg podiatrist and seriously I am a bazillion percent sure my feet would’ve been goners a longggg time ago if not for him, especially since I took up running lol. But he entertains all my wacko thoughts and ideas, like when he put me in a cast and I told him how I was going to finagle it so I could still skydive 8 days later (which I did successfully!). But I trust him enough to do surgery once and treat all my injuries well enough to keep running and now that I am facing surgery again for a different issue I know he needs (and deserves) to know. Plus, some of the extra issues I’m having are things dealing with my feet (constant numbness and my mom thinks the heel agony is bc of my calcium deficiency). But still I hate feeling vulnerable and I am still not comfortable with sharing that with anyone much less being the person saying the words eating disorder to describe me. But I have to because I knowΒ I need to and my appointment is next week.

I also have an appointment (again) with my primary doctor on Tuesday just to check in, do more lab work and make sure I am making headway in the admission to a treatment center (which I am). I am going to ask her just in case she says I don’t have to tell my foot doctor (which I doubt more than anything in the world) but still, I’ll ask. And hopefully, seeing her and being able to talk everything over will somehow help me get to the point where I am comfortable with telling another person about what’s going on (even though I know it is for the best, he will help too and that it is “okay” to ask for help).

So yeah, that’s where I am at. Not really sure where the post was supposed to go but I guess it was more of a ‘talk it out’ post since I can’t run right now and that’s normally where I have my ‘talk it out’ time within myself.

Feeling my muscles dying

I have said this for weeks, it’s how I have known it’s really bad but now it’s official, after my initial diagnosis blood work my doctor wanted to redraw 10 days later so I Got another set of labs done yesterday, today my nurse practitioner (who is so amazing) called and said my potassium is….Worse! So now, it’s bad enough to need a supplement prescription. πŸ˜” I feel like such a failure. 

Plus she called earlier after the first set of labs and said to start taking a multivitamin. I’ve been taking a gummy multivitamin bc the pill ones are so strong and I’m so malnourished that they make me sick so she said gummy ones are best for now, so that was supposed to help the potassium levels, but nope which logically I know means I am sick but I’m still struggling to “believe”. And what really sucks is now I have to take Rx potassium AND the gummy multivitamin. 

I hate the gummy bc (a) it’s gross. (B) there are 15 calories in the daily dose (2 gummies) so I have to cut that 15 out of my diet elsewhere. I know, I am in recovery but technically I am not. I am in limbo and without being able to get myself to overcome the ED voices (which I keep painstakingly trying and failing at) I don’t know how to get more calories bc it doesn’t seem acceptable, okay, painless, healthy or anything good at all. I know that’s the disease too but I just don’t know how to stop or lessen it and the guilt after is seriously verging on the point of wanting to die. 

So yeah, back to the dr next week for more labs. Glamorous. 

MEDICALLY CLEARED for Treatment!!!

This GIF pretty much sums up my feelings: a touch of relief/excitement mixed with sheer horror. One hurdle down and closer to getting into a program. My doctor (or rather, Nurse Practitioner since that is who I see) is the bomb dot com and called me back and said although my labs are consistent with being malnourished and she is concerned that they are still stable and she can clear me! I am both terrified and relieved.

I am going in tomorrow afternoon for another set of follow-up labs to check my potassium and other levels (because they are pretty out of whack) and I can get the letter and paperwork I need too. It’s all getting so real again whereas the last 10 days have had me living in a neutral state where I have been allowed to exist with my ED. Not that I mean anyone supports the ED, but where they are just trying to be supportive toward me while I get everything sorted out and they’ve been trying to encourage me to eat more but haven’t given much push back when I struggle or give into my ED brain. But now, now that I can get medically cleared it’s one step further. Now, I am going to have to talk to the treatment center again, have the case re-reviewed by the medical board, hopefully get this cleared by insurance (that’s my next major hurdle that I am freaking over) and then beginning treatment. But tomorrow, tomorrow is the next step and it feels horrifying, scary and slightly relieving at the same time.

One Week Anniversary

This exact time last week I was crying in the exam room. I was confessing my biggest skeleton in the closet, my long held secrets, fears and spilling the beans on everything I have come to know in my life.

The first time the words eating disorder were associated with my name, the first time I heard the words treatment center uttered in relation to who I was, the first time in my life I was unable tell my mom something.

What has changed in the last week?

Nothing, really. I still abide by my ED habits the only difference is now my mom, 2 sisters, best friend, doctor, random guy at the treatment center and (as of this morning) one of my aunts and uncles knows. I have also had an emotionally charged week, at least that would be putting it nicely. For the first time in a longggggggggggg time I have expressed my feelings to my mom (ending in a MAJOR blow up last night after I posted). I know everyone is trying to help but sometimes telling me that I need to do something (try harder, change my thoughts, etc.) is just not helpful especially because that is WHY I asked for help.

I still am waiting on a call from the doctor today about what I am supposed to do to get medically cleared for treatment in PHP or IOP. I am praying that I actually can get cleared and I don’t have to do inpatient. I don’t even want to think about that right now.

But ultimately, the last week has been this odd place to be. It’s like living the life of an ED without the secrecy. It’s strange, really. People encourage but don’t push me. I don’t think they know quite how to help and I certainly have no idea what to do so I just keep trudging along.

Hopefully I hear soon. I want to be done already. I’m tired of wandering around between the world of eating disorders and the world of recovery, I am scared the eating disorder one is pulling me back in by the day, slowly suffocating me back into the depths of the disease and far away from those trying to help me.

Could “Not Sick Enough” be “Too Sick”??

“I’m not sick enough,” that’s frequently what I have told myself leading up to where I am right now but never ever did I think I might be too sick for recovery. That’s right, too sick.

That’s what happened today on the phone with the PHP/IOP program I called. The guy I spoke to was so incredibly nice and really was very understanding and patient when I wouldn’t know the answer or rambled or whatever. I felt, oddly comfortable talking to him which is rare for me because I am not an outwardly emotional person about my deep dark secrets (I am not a stone cold person either I just prefer to not talk about my personal issues with others). We talked about a lot of the same things I discussed with the doctor on Thursday and about my eating habits, what I am scared of, how it is affecting my life, what types of programs they have, do I have symptoms of a plethora of other mental illnesses or issues. It lasted just over 1 hour. One of the questions was about my side effects,

(trigger warning)

I decided to be honest, totally honest and told him that I have passed out 6 times in the last 2 1/2- 3 weeks and collapsed about 5 more times. I told him about the chest pain, about the night blindness, numbness in my limbs, crying in the grocery store, everything i could think of.

(end trigger warning)

Then came the Concerned Voice. The “you may need a higher level of care” conversation.

Me??? Need higher level care than partial hospitalization or intensive outpatient?!?! I never thought I was even bad enough for IOP!! How could I be worse than PHP!!? These thoughts raced through my mind, overwhelming my emotions. Then came the next thought: They aren’t going to help you. My biggest fear. I mean granted, I always thought they wouldn’t help me because I wasn’t sick enough but now, now I am facing possibly being too sick. My biggest fear is not being helped because, quite frankly, when the doctors couldn’t figure out my GI issues they said “use trial and error.” No joke, those were the words. That’s how I ended up here because I was so scared of the error that I eliminated any chance of error (and every single food except 1 between that and the ED taking over).

The guy I was speaking to could tell I was taken aback. At the end of the conversation he said he would bring it to the doctors and treatment team to see if they would consider the case given that information or what they would recommend. My head was going nuts, I was almost completely in tears. They aren’t going to help was blaring in my mind, racing a million miles an hour. He asked me, “Do you have any questions?” I couldn’t think straight with my head yelling at me, my ED brain screaming at me that of course telling was the wrong decision and this is what I knew would happen and all I could muster was “if you can’t help me then what do I do?” And tears. He assured me that if they couldn’t help me in my current state that he would come back with some kind of referral to another treatment center to another doctor or someone who would be able to provide the level care they thought I needed. I confirmed I understood but I didn’t. I didn’t understand anything.

How could I possibly be too sick?!?!? I’m not sick. I’m not that bad at all, that’s all I have thought for so long that maybe I was wrong. Maybe I really am too sick to even see it.

After I hung up, I just laid down in bed (I was already in bed) and cried. I felt, defeated, lost and hopeless. I felt the exact same way I had after I realized no one could help with my stomach. I felt dead. I had no idea what to do but I had promised my mom to call her. I called her. I cried that no one was going to help that I was all alone, that I might not be “medically stable” and that I didn’t want to do this anymore (both have the ED and seek help).

To be honest, I think part of how upset I was had a lot to do with the fact that it kind of all hit me hard. Here I was facing something much more serious than I thought I originally was. It’s scary to admit you have a problem, it’s even scarier when they tell you that you are much more critically sick than you can see, feel or realize on your own. PHP/IOP are terrifying, the thought of inpatient or residential is downright horrifying. I don’t feel skinny enough or sick enough still and I am still coming to terms with the words ‘eating disorder’ coinciding with my name and coming out of my mouth. It’s a LOT to take in, to come to terms with, to get straight in your mind when you are already aware that your mind is lying to you. So I think my crying, frustration, loss for words, patience and exhibition of sheer terror was just me trying to finally deal with everything and sort it out, something I normally do in the gym or on a run- which I currently can’t function long enough for.

I miss running.

The good news, however, is the guy called me back within a half hour because he was able to get with one of the docs immediately. The doctor recommended going to the ER. I couldn’t fathom that, after all it’s been a few days since I passed out last and honestly, I can’t handle the stress of explaining the situation to MORE strangers. Telling my doctor, my best friend and him all in 6 days is much more than I can handle right now. It’s all moving too fast. They said if I downright refused the ER I could have my doctor do it. Yes. Manageable. Much more manageable. After all she ran blood tests and an EKG while I was there on Thursday. I can handle calling her.

In the end, that’s all I have to do. Provide them with proof I am medically stable (still can’t believe I might not be, so scared) and they will look at the case to see about PHP/IOP. I am still so terrified they will say I am not medically stable but I am trying to stay calm. I called my doctor and left her a message and my mom was really concerned after talking to me and emailed her and she also sent more resources for possible therapy because when my mom emailed her the guy from the center hadn’t called me back about getting medically cleared by the doc so she sent the information just in case but did say we might want to consider inpatient depending on the complications and if they continue. But, I called her office and left a message (it was late in the day about 4:00ish) so I expect a call back tomorrow and hopefully she’ll be able to calm me down or rationalize the situation for me.

I’m just so anxious and realizing how deep into this I am and I both angry and scared with what I have done to myself. Although, thinking about it for a while has helped calm me down I just still feel so confused and scared with where my life is at and what it all has come to.

I’ll keep y’all updated!