Dear body – end of 2016

Dear Body,

I would like to thank you for the 21+ years you have given me. You’ve faced many challenges, illnesses, injuries, surgeries, and everything I’ve done that brought harm. Despite it all, here you still are.

I am grateful what you have allowed me to do. You gave me the strength and endurance to play ten years of soccer. You make every summer in Ludington magical with all the activities you make possible: tubing, running down sand dunes, walking in the state park, swimming in Hamlin Lake, fishing. I am able to give and receive hugs with those I love most. My obsession and love for yoga wouldn’t be possible if you weren’t flexible and strong. I couldn’t dream of being a nurse one day and helping others without you being healthy enough to withstand the demands of the job. Someday I will chase my children and grandchildren around. You have gifted me endlessly. Even the parts of you I hate still are a blessing for reasons that are beyond what’s on the outside.

I am sorry for my abuse, hatred, neglect, and harm I have given you.

I am wearing you down. I know that if it doesn’t stop I will push you too far. I really can’t promise all of this will end soon or ever. I am going to try. When I’m stuck in that dark place, when I hate you and wish you were anything but the way you are, I hope I can remember the good. I will look to what you have given me and not what you are like on the outside.

I want to make amends. You deserve my love. Please be patient as I learn how to feed you, exercise in a healthier way, listen and cater to your needs, be nonjudgmental, repair as much of the damage I’ve caused that is possible, appreciate you more, be your friend and most of all, love you.

2017 will be different. I promise you that.

Emily

IOP: a fate more difficult than residential

By Thursday, I still hadn’t connected with my emotions, broken down, or processed the fact that I am on medical leave with mandatory (if I want to stay out of further treatment and continue school) IOP. I had so much on my mind that I couldn’t handle it. The time came when I was meeting with the new dietitian. I was randomly called out in the middle of AT/process after lunch. Being under the impression that I was able to continue with L made it a surprise, one that I never wanted. I finally broke over the change and lack of control in my life now. It was then that new L (to make things more confusing of course, ha) confirmed what I had already been thinking about, “this is going to be harder than residential.” We talked about how much of an uphill battle I’ll be facing these next few months. I cried from being so completely overwhelmed. This is a harsh reality to face.

This may seem odd to anyone who has never experienced multiple forms of treatment. Residential means being stripped of your freedoms, weeks or months away from home, and a complete overhaul of your behaviors. It certainly is hard to make an abrupt change and carve out the time to do so, however, one that’s just as cushy as it is drastic. You are stuck in this place that has all of the support you could possibly need, 24/7 to be exact. It’s actually pretty difficult NOT to experience at least some growth, even if that may be forced.

IOP is a 180 from residential. In my case, I will got 3 times a week (M, T, R) from noon until 5-5:30. We have 3 groups plus lunch/snack each day, along with weekly individual therapy and dietitian appointments. The entire rest of the week we are solely responsible for following meal plans, avoiding behaviors, and applying all we’ve learned. There is no one to check in on us multiple times a day or monitor our meals. If I didn’t finish a meal in residential I would only get a supplement. On the other hand, not adhering to my meal plan or otherwise slipping backwards now can lead to forced inpatient or residential and medical leave. I have major work to do and much to lose.

I always assumed my time at CFD would be the most challenging thing I have ever done treatment-wise. How could it not? I traveled across the country and gave up school. Adjusting to the new life that is residential was unlike anything else I’ve experienced. As much of a struggle this all was, it really was the best environment for recovery. In no way is recovery ever easy, but the amount of support in residential makes it significantly more attainable and manageable.

I can fully see how different IOP is. The effort to show up for my recovery is substantial. I have just 15 hours a week in treatment with 3 meals and 3 snacks. I need to make every single second count. The work doesn’t stop there. I cannot go home and just return fully to the ED. Motivation is key and if I fail to find it I am looking at IP or residential in the very near future. No one can make me recover now.

Where do I go from here? I could become consumed by fear and hopelessness, knowing of what’s to come. Giving up is absolutely the easiest option; however, it is not the one I choose to make. I am going to fight. I’ve been through years of struggle – times where I never believed I could make it through, but I did. IOP seems impossible right now and this may be my hardest battle yet. Even so, I will hold on to hope for a healthier future.

 

When treatment (and ED) multiplied

Two months ago, I only had therapy every other week.

Just over one month ago, I saw a dietitian weekly and therapy biweekly.

One month ago, I added a doctor to the mix. Around that same time, I switched therapists and began attending one group per week.

Two weeks ago, I attended a couple more groups.

Last week, I had activity therapy, R’s group with snack, art therapy, nutrition and yoga, and another therapy group with R over Monday and Tuesday.

This week, I was placed on medical leave, attended my first two days of IOP, and had to switch dietitians without any prior knowledge or choice.


It has been an absolute whirlwind. I remember thinking at so many points that I didn’t need this next step, I wasn’t sick enough. I argued, deflected, begged, hid the truth, ignored, and did everything to fight hard against any extra treatment.

I can’t fight this anymore. In fact, if I do fight it will end with me being forced to leave school and in residential or inpatient. This is serious. If I continue to follow my eating disorder it’s going to do a lot more than send me to a higher level of care.

Where I’m at now is a crossroad. I know what will happen if I continue with the eating disorder. It’s safe and familiar and easier. I’ll have the control I crave, watch my body shrink down to an “acceptable” size, and be able to cope with everything in a my life (albeit in a rather unhealthy way). On the other hand, recovery is the unknown. I’ve had some glimpses, but going full in is scary. It could mean a full life where I can become the best me: a nurse, wife, friend, mother, and person, all without Ed. The question now is this: do I stay in the familiarity of my eating disorder and fight all forms of treatment or trust in recovery by fighting my eating disorder? I think I need to at least try option #2, because I can always go back to the ED (as I have now) while recovery will only become less attainable as time goes on.

It’s over (!!) and will be for a while

As of this past Monday, I am officially done with school for the semester. I doubted the entire last 2 months that I would even finish it. I wanted to give up. Sometimes, I wish I would have. No matter what ended up happening, I did make it and I didn’t fail any classes or do bad enough for it impossible for me to make it into the nursing program.

This was my hardest semester. It isn’t easy to complete homework, study, or take tests when your body is malnourished and brain lacking the carbohydrates it needs. No matter how much I know logically, Ed still won a majority of the time. I spent more time taking naps and thinking about food than all of my schoolwork combined.

My whole treatment team has told me the same thing: you have to be stronger in your recovery if you want to successfully complete nursing school. Dr. C talked about how I can’t be so used to lying and cutting corners as I enter into the program. It isn’t okay to hide my struggles and carry it over to my schoolwork then eventually my job.

I will go into this in a future post with my thoughts on everything, but as of Tuesday I will be on a forced medical leave for the interim (J term) semester. I honestly was pretty shocked when Dr. C told me this. She was very close to forcing me inpatient or residential. For now she is agreeing on IOP, assuming I can make progress . This next 5 weeks or so are going to be spent in treatment 3 days a week. I will be able to stay on campus still (which isn’t typically allowed but Dr. C set that up right away).

I have to work my butt off if I want to start classes again for spring semester. It’s scary and hard and I’m not sure I can do it, but I am going to try. Goodbye fun interim class; hello, all of the groups, appointments, challenges, and (hopefully) growth.

 

Oh, my heart.

I had expectations going into my appointment with Dr. C last Friday. She would go over the DEXA scan and tell me it was normal. The echo would also be normal. She too anticipated those results and had no worries that it would be different. It was.

“Your bone density turned out within normal. I would like to see it a bit higher, but we’ll keep an eye on it. I wasn’t expecting any abnormalities with your heart.. but I was wrong.”

Cue shock, disbelief, and finally numb/lots of fear. She certainly isn’t a BSer, so I actually had to trust her word.

I’m not going to get into exactly what the echo found, but I’ll give her analogy. If you picture my heart muscle as a trampoline, a larger person will produce a larger bounce with more force for the trampoline to return to shape. If you take a smaller person, it only is pushed in a little and doesn’t require as much effort to get back to shape. My heart is looking like the second instance. It isn’t being forced to give a strong response. Over time, this would weaken and then calcify my heart. *this is very paraphrased

This abnormality is something that just isn’t seen in a young person. She fully believes that my malnutrition is the cause. The starved heart isn’t a healthy one. Adding dehydration to the mix doesn’t bode well either.

For now, this doesn’t have to be permanent. I can work hard in my recovery to nourish my body. If I continue down this road and the heart begins to calcify it will never get back to normal. Currently, I am using hydration to help. Restriction is back full force and it can be hard to get water down too. If I want to give myself the best chance of reversal I will need to eat. That’s pretty terrifying.

I began bawling before I even got out of the building. This can’t be true. I am still so much larger than I had been in other periods of my eating disorder. How could I have done this to myself? While the real Emily has these concerns, Ed’s view is the opposite. He says it isn’t that bad and I don’t truly need to eat or listen to her. My heart is going to be just fine. On the other hand, this also proves that I am sick and doing well in anorexia. (side note that I found interesting: this reminds me of how the serpent tested Eve in the garden way back in genesis)

This whole situation is a mixture of thoughts and emotions. Almost a week later I still can’t decide what to believe or think or feel. I’ve gone through shock, denial, sadness, etc, but not acceptance. Honestly, I probably need to see Dr. C again before any of this will really sink in. For now, I pray that I won’t randomly pass out or anything (as Dr. C warned there is a small chance it could happen) and eat/drink enough..

 

Finals week.

It’s upon us and I may feel like death until I take my last exam. Once I’m free of all of that stress I’ll have time to post more again. I have an exam tomorrow and Thursday so by the weekend I will get a little break. I have lots to update on! Until then, here’s some memes that explain my life right now.

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stress-everywhere

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Restriction is…

Unlike my previous Anorexia Is post almost two years ago, this is not planned or edited. This is raw. I am in the pit of restriction and this is going to be an honest picture of what that’s like.

Your therapist, dietitian, and doctor not being able to hide their concern. So much brain fog. Exhaustion that sleep cannot touch. Wasting perfectly good food your mom sent you. Eating the absolute bare minimum. Putting off supplements.Being terrufued if Lies, so many lies all day long. Having to write down an entire notecard of what happened on session because you lose it all within an hour otherwise. Seeing someone lifeless looking back at you in the mirror. Hours of time going by with little memory of what happened. Feeling too weak to even do gentle yoga. Apathy. Watching your grades slip fast. Hating being at home on the weekends because it means eating more/food police. Hiding the truth from everyone. When it hurts to smile or be around others. Ed thoughts every waking moment. Exhilarating, when it comes to the eating disorder. Ignoring your hunger until it isn’t even there, only emptiness. Forgetting to message your mom all day. Putting everything else last. Shutting out everyone. Hiding. Ignoring any signs that you’ve gone too far. Anxiety dominating everything. Freezing no matter how many blankets you have. Sticking to the smallest list of safe foods. Defining your worth by the amount of food you ate that day. Goals shrinking by the day. Denying yourself every food you enjoy. A false sense of strength. Napping for hours on end.Not just about losing weight.  Zoning off constantly. Being at constant war with yourself. Needing to justify every bite of food. When ED behaviors happen on their own. A dying body. Losing the girl underneath this disorder. Not believing those in your treatment team.  Completely miserable.

All the treatment last week.

I am just now writing about all 3 appointments and group therapy that happened last week. I’ll touch on each separately as I’ve made notes for each one.

Tuesday – Group Therapy

I only decided to call and attend group around 2 hours before. I had just finished with my bone scan. My new therapist hadn’t called about me joining group as I hoped/assumed, so I called them back. Having only a small amount of time to worry beforehand definitely made things better.

Going in, all I knew is that the other women would be from IOP and it was likely going to be a small group. I walked in and felt uncomfortable. I didn’t say a word before group and barely even looked up. Thankfully I was able to relax once we started talking and had introductions.

My new therapist, R, leads the group. I’m thankful I was able to meet her before our first session. We talked about values and how Ed’s values and ours differs. It reminded me of our groups with T at CFD, and he was amazing. Our first step was making our own lists of values. For me, I had authenticity, helping others, hard work, compassion, and faith. Ed was perfection, thinness, weight loss, secrecy and self-hatred. Next I made a pie chart of what I out my time in now v. what I hope for in recovery. Mine was drastic. ED thoughts and values took up over 2/3 of my time now and in my ideal recovery <2/3. That gap is scary but also shows me that I need to change. I came out feeling more motivated because my dreams are so much better than this.

Wednesday – Dietitian

It was a hard one with L. Each week has been getting progressively worse in my eating. I’m slipping and I honestly don’t fight back too much. It was time for a reality check and she helped with that. I was  so angry with her (more so Ed was) and argued back and forth on different points. She didn’t let these thoughts get by. I appreciate that.

I found a scale at home and told her about this. I said it was okay to weigh myself since I won’t have too much access. Of course this didn’t fly with her. Part of my goals for the week was not stepping onto it. She asked about my goal weight which I said will make me happier. I had some time assessing the situation and part of me does believe her. A positive that came from our meeting was her feelings about group. She was incredibly proud of me for taking initiative in my recovery.

L’s no BS policy both annoys me and supports my recovery. I need to be pushed. I don’t think I’m able to do this on my own currently. I think realizing this is better than attempting to tackle it myself. One last conversation that killed me was learning L is leaving in January. I HATE change to the nth degree. It

s extremely difficult to find a dietitian in the first place so that’s just another stressor. Overall, the appointment was helpful but scary.

Wednesday – Dr. C

This was only my second meeting with her but I already know she’s going to be a valuable part of my treatment team. She was able to encourage me in many ways. I see her as a cheerleader for my health.

Something I appreciated was her going through all of my blood work. I love to hear it explained since I’d such a health nerd. I’m glad everything was okay. I was worried I would have another thing to worry about but it isn’t. I am okay, for now.

I was comparing last fall to this one when Dr. C stopped me mid explanation. She told me that I’m not as deep into the pit. I can see the light and i am asking for help. I thought differently from that point on. She also encouraged me that I can get through the semester. I had around 2.5 weeks from the time. In reality, that really isn’t a terrible amount of time. I need to believe that I can and I  will. I mentioned taking our J term off and as of now I believe that will happen. I really think I should try to take time for myself. I don’t meed all the interim classes so this year could be the time I put my health first.

Other tips I believe would actually work: get 7 or more hours of sleep, using all  of the knowledge I already possess, set emotions aside and make school and this semester a priority, believing in the real Emily and knowing she’s there. I have to work on separating Ed from myself. My bad enough means medical issues or emaciation. I don’t deserve treatment or want it if I am still so huge. One of the scariest thing she told me is that I need to consider other options. I cannot fathom doing it all over again. I don’t have the time o money to do so. It makes me terrified. I have to break out of the rigidity of the ED or risk more consequences.

Thursday – Therapy with R

I really enjoy R so far. I think she’ll be a great fit for me. Grateful doesn’t begin to describe that considering how little hope I once had. In all honesty, she’s going to help me more than S could. Amain point is that I need to put more into my recovery. I cannot do the same and assume it will be okay. She was yet another member of my team to say no the scale. One of the best things I came out with is all the groups the center offers. They have IOP MTR and you can walk in to any group during the time. I would love to do art therapy or any group with K, and amazing OT from FV. She’s seriously the best. I need to do more. Going to groups, therapy, and a dietitian each week means many more opportunities to dig into my recovery. I will do my very best to fight against Ed.

And that’ all for this week! I think I may end up writing each time I had an appointment or group. I find it therapeutic and a way to keep track of what I’ve learned and felt over time. 

Ehlers-Danlos Syndrome: the beginning.

This is the other ED(S) that has affected me far before I ever had eating disorder thoughts or behaviors. No two people with EDS are the same. I am telling my story.

“Ehlers-Danlos syndrome is a group of disorders that affect the connective tissues that support the skin, bones, blood vessels, and many other organs and tissues. Defects in connective tissues cause the signs and symptoms of Ehlers-Danlos syndrome, which vary from mildly loose joints to life-threatening complications.” – Genetics Home Reference

Growing up, there were many peculiarities that never quite added up. From birth I had pectus excavatum (learn more about that here). We never found any answers as to what could cause or be related to it. My parents always considered me the clumsy, accident-prone child. I can’t put a number to the x-rays I’ve had because we were so certain I had broken my arm, wrist, foot, etc. I was constantly injuring myself. I would trip over things, fall, and run into just about everything. There was always pain, from minor tweaks to barely being able to move the affected joint/limb.

By the time I’d had a few negative x-rays within a year, my parents and doctor both became skeptical. They thought I was a hypochondriac or exaggerating for attention. I felt extreme guilt and started believing that maybe it was all in my head.

Soccer was my love for 10 years. Playing such a highly physical contact sport beat up my body. I never had less than 5 large bruises (and numerous smaller ones) at once in various parts of my body. At the time, I attributed it to soccer even though my teammates didn’t have near as many. Along with bruising came sprains and general joint pain, ranging from mild to causing me to limp or miss games. A new symptom and diagnosis came to light as I entered late elementary school: snapping hip syndrome. Being a kid I thought is was so cool to show/freak out people with how my hip did weird things. This made soccer and other activities painful. I had to take special care not to favor my right leg at all.

My most telltale symptom of EDS that everyone excused was my “double-jointedness.”(not actually a thing if anyone was wondering) My ankles, elbows, wrists, hip, fingers, shoulders, and knees all were affected in some way. Most were just hyperextensive, but for the rest it led to instability in the joint. I felt awesome to have these different party tricks to show others. It was this quirk I had that was special. I didn’t realize what would come from my stretchy joints.

Early middle school began with neuropathy that has never ended. The details are a bit fuzzy, but one day I hit my outstretched forearm while walking off the bus. There was a pop, then pain. Fast forward a few days and I’m dealing with sharp, burning, radiating pain all along my right forearm. Numbness and weakness followed as well. You could cut a line to exactly where it ended, all along the pinky side to ring finger, which should have been a clue as to its origin. Naturally we go to the doctor, he does an x-ray, finds nothing, and then sends me to an orthopedist. Long story short, I finally get diagnosed with cubital tunnel/ulnar nerve entrapment/ulnar neuropathy. This doctor really had no clue about EDS or anything but did discover my nerve problem was secondary to the elbow hyperextension. My nerve is entrapped which then leads to all of the nasty symptoms I have. Looking back, that “pop” I originally felt was most likely a subluxation which happened to disrupt my nerve.

knew there was something wrong with me. Everyone else saw the girl who was accident-prone, extra flexible in weird ways, had those random chronic joint issues. What I felt was much different. I’d gotten past the stage of thinking this was all fun and games. I was in pain every day, although mostly minor. My issues didn’t make sense given family history or in comparison to friends my age. I was injured more often, from seemingly small instances, and often had residual pain far after. The bruising was pretty extreme as well.

I stumbled upon Ehlers-Danlos Syndrome one day as I was searching for someone else like me. I felt there was a reason for what I was going trough and that it didn’t all happen to be occurring together. I actually was just looking for a link between my PE and anything else because it’s relatively rare for women. EDS-HT came up and suddenly I could give this a name.

The more I read (research, not Dr. Google), I could see how the symptoms I’d set out to name and then some fit into the EDS – Hypermobility Type diagnosis.

  • hyperextensive joints
  • instability in the elbows, wrists, ankles, hip, shoulders
  • ribs that move, sublux, and dislocate with pain
  • snapping hip syndrome
  • pectus excavatum
  • IBS- irritable bowel syndrome
  • chronic migraines
  • proprioreceptor issues – hence the falling, running into things, etc
  • easy bruising
  • injuries, slow healing, pain
  • questionable POTS

I still have never been to an EDS specialist or even a doctor who knows much of anything other than symptoms and basic diagnostics, but either way I live with this. The name means knowing the reason behind my struggle. I’m not making this up or crazy, it’s just my faulty collagen.

It has only gotten worse over time, but even now EDS is not gravely impacting my life. I am mobile, independent, and my pain is manageable. I sometimes find it hard to even say I have Ehlers-Danlos simply because I don’t have a severe case. I am writing here because despite that, I do struggle. I know there are others like me as well. I want to share where I am now and what my future will look like. This is a part of me and my story, however small it may be.

Alice all over again.

Well it feels like I have just woke up
In a world where down is up
And up is a long way from here
In the big wheels where they keep on turning
They don’t slow down they just keep on learning

Well my name’s not Alice but I know how she felt
When her world started turning into something else

Alice by Lisa Mitchell has been one of my all-time favorite songs since the summer of FV round one (so 3 years). It describes how I’ve felt during many transitions, both good and bad. You can read my post from last fall here.

Once again, I am listening to this song at least 5 times a day (10 times writing this post, oops). I have quickly managed to fall back into the pit that is anorexia. It’s so startling. Sometimes I do feel like I woke up and poof full-blown Ed thoughts and behaviors. This isn’t exactly true, but it’s why I relate so much to the lines “well it feels like I have just woke up in a world where down is up and up is a long way from here.”

A multitude of changes have occurred in a relatively short amount of time. I went from doing nearly 100% of my meal plan in the summer to 1/2 of the reduced meal plan. I’m not always having 3 meals per day. Honestly, I know this is a bad sign. My mind is occupied by disordered thinking all of the time. I lie about anything and everything, mainly as a way to keep my parents out of the loop. Slowly, I lose control of my life by handing it over to my eating disorder.

Down the rabbit hole I go once again… but this time, it’s tempting. I know what I’m getting myself into since I’ve been here before. I have dealt with my problems through restriction, exercise, self-hatred, body checking, etc for years. In that way, embracing Ed thoughts feels much more comfortable. In a disordered way I feel at home. Anorexia is home. How messed up is that?

No matter how stuck I feel, I am not a permanent resident, or at least I don’t have to become one. I do have the power to turn around and climb back out. The Ed thoughts are strong, very strong; however, there is the healthy me still there. She is reaching out, seeking more treatment, and fighting every single day.

I am not alone. My treatment team, although all are new, will be here to bring me up. I have the option for more intensive options if I feel unable to handle this on my own. The few amazing supports I have will always be there. I am not alone even though it seems that way.

I have to decide: is it worse/scarier seeing how I’ve slipped into relapse, or is this false comfort and hope anorexia gives me enough to continue this downward spiral?

 

Right now I feel like Alice and I don’t have to accept this new reality when I am able to turn it around and come out of this stronger.