An Update On My Health.
To say the past month has been difficult would be an understatement. I think it’s been the closest I’ve been to relapsing this entire recovery process. In fact, in some ways I would say I am relapsing and fighting against relapsing at the same time. It’s hard to tell when there is a mental hurricane going on and behaviors sneak up on you without knowing and you just keep trying to push them down. This past month I’ve felt like someone put me on a boat, took me far out into the ocean, threw me overboard and left me there to try desperately to keep my head above water. I keep searching for a life jacket or a rescue team and it just isn’t coming. THAT’s how this past month has felt.
So what brought this on?
I mentioned a couple of blogs ago that I had found a new doctor. Yay! This doctor really is great. She spent a lot of time with me listening to my symptoms and what has been happening over the past ten years and specifically the past three. She came up with a hypothesis of what was wrong and then we went on to do testing. It was a LOT of testing. I think over all I gave over 20 vials of blood, 5 tubes of spit, urine samples, you name it. Then I waited. I had to wait for a MONTH for all the results to come in. I don’t know about you, but I struggle with patience, especially when it comes to my recovery and why I’m feeling so terrible.
To give you a little back story, when I entered treatment in December of 2015 I was very sick. Malnutrition-ed, having heart problems, gut problems, fatigue, no periods, the list goes on. I started eating again and all was going fine, and then about six months into treatment something changed. I put on a lot of weight very quickly (like 30 pounds in one month) and my body started to swell. Every day I was in pain. I would wake up ok and then by the evening be so swollen that my legs and stomach and feet would hurt and be like 3-4 sizes larger. I complained about it to my doctor and she dismissed it as “the recovery process” and told me my body just needed to heal, give it time, and the weight will go back down and the edema will stop. So I did. I gave it time. I worked with a therapist and a dietician and waited. About a year later things were not getting better. I was gaining more weight, the swelling wasn’t going away and it was becoming harder and harder to simply live life. I didn’t understand what was going on. I don’t overeat. In fact I have a really healthy diet. At this point I was exercising a bit again, but nothing was changing, I was gaining and swelling and SO tired it was hard to get out of bed. I then went to a doctor at John Hopkins about it and to my dismay she said I was secretly binging and needed to restrict my calories. WTF?! I was not secretly binging and if I restrict my calories I gain MORE weight. I was distraught at this point. I felt like there was nothing for me to do but wait this out and think maybe it was just my body healing. So I did. Then I got to the two year mark. My weight had stopped gaining but at this point I was up a substantial more amount of pounds and now the heaviest I have ever been in my life. It is incredibly terrifying and painful both mentally and physically. I cannot describe the emotional pain I am in over this weight. It has been physically and mentally exhausting as well as embarrassing. Even this past week I had a woman card me for buying wine and she refused to believe the photo on my ID was me. It was humiliating. What sucks the most is that I still had never over eaten a day in my life. I eat a really healthy well balanced diet. I kept going into my doctor and telling her I felt terrible. I’m STILL gaining weight, I don’t know what is happening. I’m swelling and tired and miserable. She dismissed it as “body image issues,” and sent me on my way. I cannot describe the suffering that I have felt because of all of this. Look, I can accept not being perfectly fit and thin as I was when I entered recovery, but being XX pounds over weight and in a body that is in no way shape or form normal for me, is not ok and certainly not just a body image issue!
I work with a dietician. This made no sense. I finally switched dietician’s and thought maybe a different one would be able to figure out what was going on. After working with me for six months she finally said to me that something is wrong and it has nothing to do with what I’m eating. It isn’t a diet or energy issue. (aka calories or what type of food I’m eating). There must be something internal that isn’t working right. She had her theory but she is just a dietician so she referred me to an endocrinologist. I went to the endocrinologist and they ran some basic tests and they found some interesting results. I had good cholesterol and blood sugar, but I was highly insulin resistant, which doesn’t make that much sense, but whatever. What’s hard here is that most doctors don’t know how to treat patients with an eating disorder and they aren’t familiar with eating disorders or recovery in general. So, this doctor took one look at my weight and my insulin resistant result and told me to go on medication and lose weight. She actually at one point accused me of eating 4000 calories because of my weight, which is messed up because some days I was struggling to eat half that. I felt judged, embarrassed and hopeless. So, I went on the medication hoping that this would put a stop to my swelling and weight gain. It did not. Why? Because the doctor didn’t find the problem. She looked at me like a fat person and blamed the fat person for the problem instead of trying to find what the problem actually was.
So, about two months later, my dietician told me she found another doctor that she wanted me to go see. She came highly recommended, she is very prestigious and very hard to get into. My dietician had contacted her about my case directly and the doctor said that it sounded right up her ally and she would get me in right away. This is where we pick up to my three hour appointment with her which led into a week of testing and then a month of waiting for the results.
Now the results are in, and there is a lot wrong. I don’t have the education or the energy to describe all of the results here on my blog. I spent an hour and a half with my doctor going through the results, so that should put it into perspective. It was incredibly overwhelming. I guess to sum it up, I am severely difficient in many nutrients. Some of these nutrients are crucial to the body functioning correctly. It became clear that my body is not absorbing what I am eating correctly and I have leaky gut because I eat these nutrients, but my body just isn’t absorbing them. (This happens in anorexia). My hormones are so out of whack it was unbelievable. Like if a normal range for one is 50-150, mine was a 2. I also was diagnosed with stage 4 adrenal fatigue and a liver that is malfunctioning and not detoxifying correctly. (also due to anorexia as well as birth control.) I was tested and diagnosed with gluten intolerance as well as a severe inflammatory reaction to twelve other foods. Some of these foods were eggs, potatoes, coffee, carrots and apples (foods that I eat almost daily). All of these things can lead to a huge amount of inflammation and weight gain. The swelling she believes is from a hormone in my adrenal gland as well as from my liver not processing things correctly. Greeeeeat.
Basically, to sum it up, anorexia, extreme exercise and stress, ruined my body. It just isn’t working right. My doctor said that sometimes in recovery, eating allows the body to re-heal, but there are times where the body just can’t do it on its’ own and it needs help. This is me. So, my doctor immediately put me on 15 supplements. Which sounds fine except its incredibly overwhelming. Some are three times a day, some are multiple pills two times a day, some are powders between meals, some are pills right before meals and some are during or after meals, before bed or right when I wake up and specifically between 12-2pm. It feels like a full time job just keeping up with this stuff. I got off my birth control because it was reeking havoc on my healing. (Just a side note, I had asked my previous doctors multiple times if I should get off it. I wasn’t getting periods anyway. They adamantly said no because of my endometriosis and that it would make my body not know what was going on….they were wrong). I also had to immediately go gluten free as well as completely cut out all twelve of the other foods that were causing inflammation and reactions in my body. These are NOT easy foods to cut out either. Most gluten free foods are made with potato starch and eggs, and since eggs and potatoes are causing my body to swell, I can’t eat them and you would be amazed at how many things have apples in them or chili peppers. I also have to rest as much as possible, remove myself from anything that would remotely cause me stress, eat well and enough, not overexercise (walk, yoga or weights only) and hope that this heals. Which by the way, takes 1-3 months for every year of fatigue. So I’m looking at another year at LEAST of healing.
So how am I feeling about all this?
It’s been really bad, I’m not going to lie.
If there is an emotion I’m pretty sure I’ve felt it over the past two weeks.
I’m happy because finally a doctor has found what is going on.
I’m angry because why didn’t my other doctors take a look at this? Two years of suffering could have been prevented. Why do I have to be this weight? Why is it going to take so long? Why couldn't I recover like a normal person? I tried so hard to do everything right and this is the hand I'm dealt? Why did I do this to myself?
I’m scared. I’m scared I won’t heal. I’m scared I’ll never lose the weight and always be overweight now and feel terrible. I’m scared I’m still missing something. I’m scared to trust this doctor since my last three doctors were all wrong and I lost years of my life because of it. I’m scared to go another year living like this. I’m scared to be seen like this.
I’m overwhelmed. This many supplements is overwhelming. Going gluten free is overwhelming. Cutting out the other foods is overwhelming. Going to restaurants now is like a cruel joke. Going into the grocery store I now have to read every freaking label or ask, “whats in that” to every person that offers me something.
I’m exhausted. I don’t feel well. This gluten withdrawal is a real thing. My hormones are all out of whack. I was told I would feel worse before I felt better. It was no joke. It’s like everything in my body is being challenged to change and I’m sitting on the outside fatigued, angry and hormonal.
I’m relapsing, or trying my hardest not to. I was anorexic for seven years. I have been recovering for a little over two. I had just gotten to a place where I was cool with eating pizza, not scared of eating most foods, not calling foods good or bad and not correlating food with my weight and then boom, I’m put on a seriously restrictive diet. I thought I was strong enough. I thought I could handle it. I thought I was recovered enough. Nope. Almost immediately I became scared of food again. I lost my ability to feel my hunger cues. Calling foods good and bad and being afraid of eating too much took over. Before I knew it my dietician was commenting on most meals, “this is not enough,” or “you need to add more to this.” I don’t know what happened. It just takes over.
I found myself googling and googling. I don’t know why I would do this considering I wrote an entire blog about how terrible it is to do and detrimental to my mental health and stability to sit and google things. When I google I am SO vulnerable to satans schemes and my eating disorder. It is THE fastest way for me to feel hopeless or believe the chocolate covered crap that diets are. But, here I was googling adrenal fatigue, how to lose weight with adrenal fatigue, can you ever lose weight with adrenal fatigue, stories of weight loss with adrenal fatigue. Google would pop up articles about how adrenal fatigue doesn’t exist, naturopaths are quacks, you can only lose weight with adrenal fatigue if you cut out gluten, dairy, carbs , sugar (which is so ridiculous!!). Some supplements are bad, don’t take too many supplements, you need more then just supplements. I found myself reeling and stressed and anxious. Before I knew it I was scared to eat any food, desperate to lose weight, not trusting my doctor or dietician and the worst of it completely and utterly forgetting about God who is actually in total control.
Like I said, the past month and specifically the past two weeks have been really bad. Like really really bad. And we haven’t even started to talk about how much all of this has cost. (which I will not.)
Clearly I can’t live like this. I can’t be stressed and anxious and obsessed with my weight, googling everything, trusting no one, frantic about my future and feeling tortured by my present circumstance. It must stop. I CAN DO THIS!
So what is my plan to get it together?
1. My mom has yet again given me great advice. I’m going to take it one day at a time, the best I can. Today I will wake up, take my supplements, rest, go for a walk, do as much work as I can, spend time with God and simply take this one day at a time and and some points, one moment at a time.
2. I am going to stay off the internet. (please hold me accountable to this) I’m going to try my best to stop googling. The people online don’t know me, my story or my body. They have their own experiences and their own vulnerabilities. They want their quick fixes and they are desperate like me. I don’t need to feed into that environment. I am vulnerable to diets and things that seem great because of my situation, so I need to be very careful to protect myself from this and listen to my doctor.
3. I’m going to trust my doctor. I have zero reason not to trust this doctor. She did serious in-depth testing. Everything she is saying to me makes sense. She didn’t tell me to do anything other then what came from test results. She works at a practice of very prestigious doctors in Washington DC. She has validated me and is helping me. There is no reason for me not to trust her.
4. No electronics after 10pm and I’m going to be limiting my phone. Lets be real, the iPhone is stressful. It makes me lose time and bombards me with things I don’t need and keeps me up later then I should.It is a huge source of stress. It’s time to spend time reading or doing crafts or being outside. Not on the phone.
5. I’m going to rest every day. I’m thankful that my husband is being supportive when it comes to my need for rest. I’m also thankful I work a freelance job that gives me the schedule to rest. My adrenals and body won’t heal unless I just allow myself to rest.
6. Move my body kindly. I’m going to walk or move each day that I feel well enough too! Going outside for a walk I have found to be really healing. Yoga is a little hard because my body doesn’t feel good, but I try!
7. Get plugged back into the WORD! I was in two bible studies and they both ended two weeks ago. Is it a coincidence that the minute I end my bible studies I become a frantic person? I think not! So I ordered a seven week bible study yesterday to do this summer until BSF starts up again. If I’m in the word God keeps me grounded. (I’m doing Hosea, Unfailing Love Changes Everything, by Jennifer Rothschild if anyone wants to do it with me)
8. I will fight HARD against my eating disorder. I will eat fear foods. I will empower myself by finding a way to make gluten free, egg free good tasting pizza. I will remind myself constantly of my worth and how it has nothing to do with my weight. I know when people see my weight gain that it is shocking, but it also is my body healing and really having a hard time from what anorexia did, not because I’m a bad person. I’m still a great aunt and sister and daughter and wife and woman of faith. THAT is what matters. I will daily tell my eating disorder to F OFF because I am DETERMINED to win this battle. Even if it takes me another year or two.
9. I will trust in God. I will remind myself who is in charge and where my hope lies. He has the power to heal me. He can still use me in ANY body I’m living in. With him I am able to overcome my temptations to return to my ED and in him I know I am strong enough to get through this. I am going to trust that this is part of his plan for me and that I am learning something I need to learn
I don’t know how long this healing will take. I don’t know if I will ever lose all this weight or if I will ever feel like myself again. I honestly don’ t know if I will ever get to feel that sense of recovery from an eating disorder where I have my normal body back and am able to eat foods without restriction or judgement. There are a lot of unknowns and they are scary and at times overwhelming.
What I DO know is, I’m doing my best. I am a really strong person. Every time I fall down I will get back up again and keep going. I have a God who loves me and an eternity with him to look forward to. I’m going to take this one day at a time and I could really use your support and prayers. :)
- Sara -