What is NEDA Week and why is it so important?

It’s finally here! NEDA week – National Eating Disorders Awareness Week – is my absolute favorite time of the year. I am passionate about both eating disorder and mental health awareness, so I take every opportunity to do so. Here is a small blurb from NEDA’s website:

#NEDAwareness Week 2017

Spearheaded by the National Eating Disorders Association, the goal of National Eating Disorders Awareness (#NEDAwareness) Week is to shine the spotlight on eating disorders and put life-saving resources into the hands of those in need. This year’s theme is It’s Time to Talk About It and we’re encouraging everyone to get screened.

It’s time we take eating disorders seriously as public health concerns. It’s time we bust the myths and get the facts. It’s time to celebrate recovery and the heroes who make it possible. It’s time to take action and fight for change. It’s time to shatter the stigma and increase access to care. It’s Time to Talk About It!

My personal goal this week is not only to share all of these wonderful resources, but add my own content as well. My hope is that I am able to reach others and promote change in some way.

I will be posting this whole week on different topics. This is my 3rd year I’ve had this blog for NEDA week, and I want to make it the best one yet. Here are my posts from years past:

I will leave you with an interview from the director of my IOP clinic. She and a few others who are recovered spoke to our local news about eating disorders/NEDA week. I am so thankful for the resources I have right here in GR. Also, they are lighting the downtown bridge NEDA colors, the first and only landmark in Michigan to do so! II cannot wait to see things unfold this week!

I am not at all ready for this.

Ever since the semester began, my schedule has been crazy between treatment and school. I attend half of IOP Mondays and Tuesdays, then the full day on Thursday, which requires skipping my Spanish class. The whole situation worked great (in my opinion). My Spanish professor is understanding and was willing to rid me of a limit for how many weeks I could do IOP. I am so very thankful for this and the fact that I can get the help I need. Everything was fine until today.

Backing up a bit, I met with Dr. C on Friday. She believes in and gives me more credit for the progress I’ve made. I definitely don’t see it, but I suppose my opinion doesn’t really matter (as you will see…). She somewhat alluded to the fact that I need to cut back on treatment. She was not at all clear on how/when this needed to happen, nor did she explain why it was imperative. 

Fast-forward to today, when I met with L and R during IOP. I went in very anxious, as per usual. I didn’t follow through with my goals fully (also typical) and I wasn’t sure what to expect. I figured we would discuss stepping down. A few weeks before we made a tentative plan: begin by eliminating Monday’s (half of process group, art) while keeping Tuesday’s (experiential and process) and the full day IOP on Thursday’s. Within the next few weeks I would slowly wean off IOP and groups. I fully expected this to take about a month which I was fine with. Obviously, I can’t be doing this much treatment forever; however, I in no way felt ready to drop off much support now. I wanted and needed gradual change, because Lord knows I am terrible with change. Key point here: I imagined I would be told to cut Mondays out starting next week and to see where things go from there. Of course I was wrong. Of freaking course.

The joint meeting began with L doing most of the talking. She wanted to know how my eating and exercise were. I had done somewhat better than in weeks past, but I felt so stuck. We’ve discussed this at length before. I am honestly in much the same place as I was a month ago, and many similarities to around 8 weeks ago. I haven’t been able to push myself into the leap towards full recovery, not this is half-in, half-out predicament. I can’t imagine being here forever, yet the reluctance caused by thoughts is overwhelming.

R dropped some shocking news once most of the dietary side was covered: “Dr. C and the treatment team are having you step down to just Monday and Tuesday. Today will be your last day of IOP.” I’m honestly surprised I didn’t burst into tears on the spot. I don’t feel ready. I hate that this was shared with me at the last possible second. I wish I had a say in things. I want this at my own pace. Most of all, how could Dr. C take this upon herself and essentially get me “kicked out” of IOP?

I am angry at her. She could have told me something, anything, when I saw her Friday. I may not have been fine with it but at least I would have had more time to process. The main reason I need to stop is because of the accommodations needed. She believes it will look bad for nursing school, even though my advisor is aware. I find it ironic that she put me on medical leave for treatment but now has taken me out of it when I still benefit greatly from extra support. I just don’t get it, not at all. 

There aren’t very valid reasons for this overhaul of my current schedule/life. I can barely handle meals at school and I’ve consistently eaten below my meal plan. Overall, IOP is still helping me at this point. I am forced to miss IOP for at least the coming week. I have a feeling it won’t end well and we will again be sitting, going over how stuck I am. All I can do now is wait.

P.S. I completely appreciate all comments you all may have; however, due to how I’m feeling now I would like to address something that isn’t going to be helpful. In general I wouldn’t like to hear many “it will be fine, a blessing in disguise, etc.” I’ve cried more in the past not even 12 hours than I have in months. I couldn’t believe this type of comment if I tried. Right now I am wallowing and trying to sort this all out. Thank you for being understanding ❤

Climb on?

I went into my appointment with Dr. C yesterday with just one objective: get approval to start rock climbing.

I was first introduced to climbing last fall via my roommate. We are blessed with a huge rock wall and bouldering area here at Calvin. Around one night a week, all year long, I went climbing. I grew stronger and fell more in love with it. The huge sense of strength and power continued to bring me back. I was able to challenge myself with the continually changing routes. It certainly isn’t easy, especially with Ehlers-Danlos, but I made it work. The minor (and one majorish) injuries were worth it.

Unfortunately, I didn’t get to the wall much this last semester. My eating disorder played a huge part in this. When I wasn’t isolating, I usually felt too weak to climb. I still pushed myself when I probably shouldn’t have. This leached some of the fun away from an activity I enjoyed so much.

I’m not in a perfect or great place now, but I am more than mentally ready to tackle climbing again. I crave another way that I can appreciate my body and have fun with friends. I was relatively optimistic heading into my appointment. Honestly, I shouldn’t have been, not at all. I am better than the end of less fall. I am off medical leave. I am handling the semester thus far. I am not, however, at a healthy enough place to take on such a physically demanding task.

I grew the courage to ask for Dr. C’s approval towards the end of my appointment, to which she answered, “Absolutely not,” in a solemn tone. I immediately questioned why and hoped for a compromise. Her concern is my heart. I am not allowed to belay (hold the hope taught as your partner climbs) because she is afraid I will pass out and put someone else’s life on the line. While not ideal, I could technically still climb but need to have one other person belay my partner. That idea lasted for about two seconds before she gave her reasons why I cannot climb. One is that I would pass out at some point during my climb. Assuming I had an experienced and focused belayer, I would be okay. More serious than this, she believes there is a chance that I could collapse or even have a heart attack. If that were the case there isn’t any guarantee someone would be able to help  or even resuscitate me in time to prevent serious damage. Minor issues with climbing include broken bones (due to possible osteoporosis/penia with my ED), dislocations/subluxations (thanks EDS), and in general injuries related to the way I am inadequately nourishing my body.

I’ll admit, I do understand some of her worries. It isn’t a great idea for me to try this without following my meal plan. If I was restricting that much I probably would be too weak to even hoist myself up the wall. It’s happened before. I don’t agree with most of the heart stuff. I frequently get dizzy and sometimes feel like I’ll pass out. This mainly occurs if I’m going from sitting or lying to standing too fast, or when I am not hydrated. I could easily be careful enough to prevent this. There is no way my heart is “bad” enough to cause me to collapse or worse. I have no special restrictions otherwise for the abnormality. Mainly I just need to ensure I hydrate and feed my body. Easier said than done, but something I would work on the days I climb.

Part of the reason she is so worried about my heart is because she believes I may have Marfan Syndrome. I am missing nearly all of the markers minus my PE, hypermobility, and vision (eg: not tall, no long and skinny limbs/feet/fingers/etc, no mitral valve prolapse or aortic root dilation, none of the facial features, lack of family history). If I did have it there would be an increased risk for multiple heart conditions much more severe than what I am dealing with currently. I still need to wait until I see my pediatric surgeon in a few weeks (more on that soon), but I can almost guarantee he will rule it out. Once that happens I may be able to negotiate with Dr. C again. Side note: I’m looking forward to picking his brain on EDS and hopefully, maybe getting referred to someone who actually gets it.

As much as I disagree and discount her concerns, I will listen and resist rock climbing for now. The tone she used scared me. We have spent two months now talking about my heart and how imperative it is that I start nourishing my body to prevent damage in the future. I can’t easily forget or play my symptoms off as absolutely nothing no matter how hard I try. It isn’t normal for your heart rate to increase 30 bpm when standing and as much or more practicing gentle yoga. I shouldn’t, at 21, be plagued with symptoms, an abnormal echo, and worry. And yet, here I am.

This conversation we had is about far more than just rock climbing. Her goal isn’t for me to increase my food intake so I can have her blessing to get back on the wall. This is about taking care of myself. If for nothing else, I need to repair any of the damage I’ve caused before it gets any worse.

I didn’t get the answer I had hoped for. I don’t agree with some of Dr. C’s reasoning. I am still resistant, making excuses, and defying her (and everyone else’s) requests. I have started to realize the bigger picture here. That’s a step in the right direction, one I don’t want to take, but a step nevertheless. One conversation at a time, I am getting there, even if it means getting motivated about renewing my rock wall privileges.

 

Where will you be in 10 years if you follow Ed?

A few weeks ago at IOP, A allowed us to forego process group and instead we had a very extended game of “Recovery Jenga.” It’s essentially normal Jenga, but all of the pieces have a question written on the bottom of them. These had a huge range: coping skills, one way you can take care of yourself this week, list positive traits, what is something for/against recovery you’ve done with week, triggers, and some fun ones thrown in. It was more of a light-hearted get to know you, until this question came up. Both the question and answer immediately changed the tone completely (which makes sense considering this is what EDs do as well).

Answer: “Dead.”

This question was given to A,who is recovered from an eating disorder herself. From this viewpoint she can look back on all Ed did to her and how we are affected as well. Her explanation was that if she was still stuck in her eating disorder there was no way she’d make it ten more years. Hearing that was sobering. This isn’t some doctor or dietitian who has only worked with eating disorders. Sure, they could tell you statistics and whatnot, but they haven’t been there. A has and that makes this answer more impactful to me.

Continuing this life if relapse and trusting in Ed for ten years would be miserable. Each day all of my energy would be put into my eating disorder. Presumably, it would require me to give up any and all dreams. The health complications would compound and eventually leave me very sick. Chances are, I would succumb to my eating disorder before the end of a decade..

I am not on my deathbed now. Because this is true I will always have the chance to turn things around. I can fight. I won’t allow myself to be a statistic who gets swallowed up by this disease. It’s time to take back my life and find hope for the future.


Since drafting this post over 2 weeks ago, a sad situation has transpired that makes her answer all the more real. My closest friend I made in residential is currently on the edge of death due to anorexia. It’s hard to comprehend that the hilarious, sweet, spunky, and sarcastic girl I met is quickly fading away. Right now I am praying for a miracle, for anything to get her into recovery.. ❤

Eating disorders kill. Don’t give yours that opportunity.

Where I’m at I / where I’ve been

It feels like ages since I’ve updated here, really “just” 3 weeks, and it has been (at least by my standards). Technically I last posted 3 weeks ago, but I also have drafted at least 4 posts since then. I am a serial drafter, I believe. I only have 36 currently. My ideas for topics are never-ending, so I start one post only to succumb to perfectionism and quit early. Anyways, I don’t have a great reason as to why I haven’t pulled the trigger and published something. Most likely, it’s a combination of writer’s block, feeling overwhelmed, and low motivation.

The past three weeks have been ROUGH treatment-wise. I feel for the staff at IOP, because I have been stubborn as hell and somewhat defiant. I feel pretty bad looking back at some of the conversations I’ve had. There are multiple factors behind this, which I will explain in a post soonish. A quick rundown: fear , being stuck between full recovery and Ed, lack of motivation, depression, and plain not wanting to give up my eating disorder. I am doing somewhat better now. I am trying to trust this process and not my disordered thoughts. Easier said that done, but I think/hope it will happen.

Last week was my first back at school. I am taking psychopathology, american literature, world history, and spanish. I am most excited about psychopathology. Lit seems like a great class too, especially with a friend (and fellow nursing student!) and wacky/amazing prof. My psych prof is also wonderful. I actually don’t mind the history class content-wise and the lectures and are relatively interesting. Spanish is with my same professor (thankfully). Overall, it isn’t crazy yet. I am beginning to feel more stress and worry over how things escalate the next few weeks. Hopefully I can keep my sanity, but time shall tell.

Because of school, I’m obviously not able to do IOP 3 times a week. My schedule wasn’t exactly made with that in mind, so getting there is kinda tricky. On Monday’s, my ast class ends at 2:20. I am able to get there within 20 minutes and get to attend half of process, snack, and art therapy. I stay until 5 and head back, usually stopping at Meijer first. Tuesday’s I have class until 1:20. I again leave right after and arrive at 1:40ish. This is halfway through the first group (typically this is experiential). We have another group following which is activity therapy of some sort, sometimes an outing. Process group is after snack and we’re done at 5:30. Thursday’s I only have 2 classes, psych in the morning and spanish 12:30-1:20. The issue with my schedule is that I wouldn’t be able to attend the full day of IOP at all, unless I skip spanish. After advocating for myself I got approval to do so. After last week, I am appreciative of my professor’s support of my treatment. I need this, at least for now. I am not ready to step down entirely yet, and now I don’t have to.

Going from complete boredom and feeling stagnant for over a month to a hectic schedule is stressful, to say the least. I haven’t gotten a hang of this yet. I’m hoping to move and grow through this period of change, not become overwhelmed by it.

There is much more to be said about my thoughts now and even more so my time in IOP.I promise that will come soon!