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 know 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.

Confession:

When I eat and the hunger goes away even a little I  always feel like I have overeaten, like a failure and then when the hunger comes back I am always relieved and more relieved the sooner it does. This is one of the things I hate the most. 

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. 😔 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.

Eating Out…

(Trigger warning: eating disorder; specific mentioning of foods)

Freaking Out!!! I am at Panera with my mom and sister. I am so nauseous today and don’t want to eat (moreso than my normal desire to not eat) but really can’t stomach the thought of cauliflower which is my only food normally. My mom said to get soup. I can reason chicken broth and I love Panera but I am so scared of the noodles and chicken being in the soup and I am so so so so so scared. I HATE eating out but Panera soup is only 80 calories so it’s a little better but still I am anxious over the bad parts. My mom said she’d ask for it to be mostly broth (thankfully) so we will see. Plus it is REALLY REALLY BUSY. Lots of people and that makes everything worse but I’m glad we got a table near the back where there’s less people. 

I’m waiting at the table while my mom and sister order. I can do this. I think. Ugh the anxiety is NOT helping my nausea and everything smells delicious. I used to study here daily and now I am on the verge of panic attack. I can’t believe this. I can’t believe I am scared of frickin soup. 

Oh well, I am just going to make this as big of a #recoverywin as possible considering I wouldn’t have dared come unless my mom and sister convinced me and they only did that knowing about my ED so they were super supportive.

Post-meal update: I survived. I only drank the chicken broth but still I haven’t had anything other than my one safe food in months and I didn’t cry or freak out. Still, I wish I could enjoy the food and being at a restaurant. 

Encouraging Thunder Award!

encoraging1

Rules for accepting the award:

Post it on your blog.
Add the Encouraging Thunder logo.
Grant other bloggers the award.
Mention your purpose in blogging.
Thank the person who nominated you.

***

This is so sweet! Thanks to Amb for nominating me for this, I love this idea! First, let me just say that the last week and a half has been…ermmm… difficult (to say the least haha) and you (as well as so many other awesome bloggers) have been so amazingly supportive and encouraging, giving me confidence, strength and shedding hope at times that I felt totally lost, small and terrified, so thank you for that because it has helped more than you know!

My purpose in blogging, however, started to kind of cross something off my New Years Resolution list. I had made a list and one was to start a blog. At the point that I started this blog it was mostly just me trying to get my thoughts together, put things on paper, hold myself accountable and maybe work up the courage to get help for my ED. I honestly credit it with actually getting me to go through with that last week because without everyone’s support, wisdom and encouragement I am almost completely positive that I wouldn’t have ever walked my terrified, shaking self through the doors of my doctor’s office last Thursday nor actually told anyone. Now that I have won my first battle against my ED (I say battle b/c there is still many more to come before the war is over) I am hoping to continue blogging- the good and bad- all through recovery and maybe help a few others out along the way. I personally find it much easier to write my feelings than discuss them out loud- perhaps that’s the introvert part of me. I am also longing to run again. I recently had to stop for a bit because I am so weak from this ED so I look forward to bazillions of running posts and getting back to my beloved sport.

There is so so so many great blogs and people who have been super amazing for me I am new(ish) to this so I don’t have too many to nominate but we will start with these next ones. So, finally….

The nominees are:

1. myambivalentexistence for all the amazing support and encouragement you showed me, especially last week leading up to my doctor’s appointment 🙂

2. myquietroar for supporting me and providing me tips on how to approach my doctor and for understanding the love of running!

3. Em Recovers because she always has THE best links in her blog and has some amazing insight and I know she is going through a hard time right now but from the start of my blogging adventure she has been one of my favorite sites and deserves to know how much guidance and encouragement she has provided me. And I’ll be darned if I don’t provide her with the same encouragement now that she is hitting a speed bump 🙂 ❤

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!

All Hope is Gone.

That was the WORST. I never want to go into recovery. This sucks. The guy was super nice, got my trust, I told him the same stuff I told the doctor, then…

He asked more about the side effects. I mention I have passed out 6 times in the last 2 1/2- 3 weeks and collapsed about 5 times on top of that and he then says (with a very unhopeful disposition) that they may not be equipped to handle that and he’ll have to run it by the doctors and basically long story short: NO ONE IS WILLING TO HELP.

Remember that ounce of hope I had. GONE. I’m done. Defeated. I don’t care anymore. I promised I would tell the truth and I did and see where that got me? No where. 

He said he would call me back in a day or so after hearing from the team but I am not expecting it to be a good call. I hate this. I hate me. I hate my life. I hate that he made me gain some trust to tell him everything and then yanked that carpet right out from underneath me just like the doctors did last time with my stomach. Lesson learned.