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When Your Best Isn't Good Enough.

April 6, 2019

 

Welp, I had a different blog in mind for this week, but I've had a lot happen, so I thought I would share about it. It's been a while since I wrote a blog about my actual recovery and how it's going, and well.....it's going. (blah). 

 

It's such a rollercoaster. About a month ago I received some lab results back and honestly, they were the best lab results I've had since I started treatment. (AMEN!) My malnutrition is on it's way out, my inflammation markers have gone way down (even though they are still pretty bad), my insulin levels are almost back to normal, my blood sugar is basically perfect and most of my other tests (I think there were like 40) are finally coming back a smidge away from where we want them to be! There are only a few that just can't seem to get it together. 

 

I was excited! It seemed like, at least on paper, my body is doing a lot better. I mean, for gosh sakes it's only taken three full years, thousands of pills (no exaggeration), tons of appointments, days of rest, days of movement, test after test after test, and an ocean full of tears. 

 

The problem is, I still don't feel great. 

 

I'm still swelling really badly and I'm in pain 90% of the time. On top of that, I found out I'm still gaining weight.....$%&*($*$&(%$*&*$@#*($@&#@(#*$&@#*(%&@#*($&@#*%(@#*%&@(#*&. (Sorry, Just had to vent there!)

 

I can honestly say I don't know what to do anymore. I feel like I'm doing literally everything I can do, and my swelling and weight are still not getting better.   I exercise. A good amount. HIIT. Walks. Weights. Cardio machines. Still gain weight and swell. My dietician tells me to eat more so my body trusts me. I do and I gain weight. I get scared, so I eat less, guess what?! I gain weight and swell! Cut out carbs? Gain weight and swell! Don't drink alcohol, gain weight and swell....drink alcohol....gain weight and swell.  I ran a mile for the first time a week ago. It took me four days to recover from the swelling that came after. I take seventeen pills a day, tinctures, eat mostly anti-inflammatory, gluten free, very little sugar, and I still gain weight and swell. I pray every day, go to Bible study, ask others to pray, have a serious faith and hope in God's healing, I'm still swelling and gaining weight. I practice coping skills, body acceptance, thought logs you name it. I still live in a body I hate, that I'm embarrassed of and have literally zero control over, that swells up in pain every since day. I'm giving it my best, and that still isn't good enough.

 

I fall into deep deep depressions about this. I have severe anxiety and panic attacks when I think about it. Today (the day I'm writing this) I've had three. What are the panic attacks like? Well, something triggers it. Like I need to go somewhere that night. I'll be swollen and feel awful. Which will lead to me feeling gross and ugly. Which leads to me asking a million questions in my head. Will I just keep gaining and gaining? Until when? Will I ever not swell and be in pain? What is wrong with me? What did I do wrong? Is God punishing me? What do I do? Do I eat more? Do I eat less? Do I exercise more? Do I rest? Is it a pill? Is it stress? How do I lose this weight? I can't believe this happened! HOW DID THIS HAPPEN?! I'm so confused! I truly have zero idea. This spirals down and down and down until I can't catch my breath and feel like I'm so spaced out and scared that it's unbelievable. 

 

I know there is something wrong with my body. My Doctor and Dietician know there is something more wrong with my body. The hormone, cardiac and metabolic damage due to my severe restriction and excessive exercise is serious. Anorexia messed me up. Big time. No matter how much I try, I can't seem to fix it. 

 

Do I wait? Am I just still healing? Or do I act? Maybe I'm wrong about all this and need to go on some crazy diet? I know that's stupid, so I won't do that, but my mind likes to battle it out about 30 times a day anyway. What do I do? How do I stop the swelling? How do a lose the overshoot weight so I feel like myself again?

 

It's torture. It....is....torture, to wake up every day in a body you hate, do everything you can to change it, and watch it not change. Wait a minute, remember those last lab results! Ok, it's true. Those are better. So maybe I'm healing from the inside out. Maybe my body is bad at multi-tasking and just wants to heal the inside first and then go after the weight and swelling. I've heard about a couple people had cases like mine and it took them 5-10 years to recover. I don't flippin know. I know I don't like it though.

 

This past week both my doctor and dietician conceded that they think I need more specialized help. New sets of eyes, more extensive medical treatment because my case is so bad and atypical. THAT was fun to hear....

 

So, that's what I'm doing. My husband and I are off to the Cleveland Clinic to get more help. I'll be starting with a specialist in endocrinology, and also with a new dietician that has even more specialty in hormones, metabolic problems and eating disorders.

 

I'm hopeless and hopeful at the same time. Can you be that? I guess you can because I am! On the one hand I feel like I will never change. My body will forever be stuck overweight and in pain. I feel defeated and just want to hermit up in my home because how do you live in pain and swelling every day? On the other hand I HAVE to believe it can get better then this. Someone will know how to help me heal. There is no way I can still be like this in ten years, right? I'm certainly different now then I was when I was 25, so at 45 there is no way I'm going to be same! So I get up, take a walk, and get after my day the best I can.

 

I feel a bit defeated to be going to another new doctor. It seems like every doctor thinks they can help and then after a while they are like hmmmmmm not sure what is going on or why this is happening, maybe try another doctor. Well, Cleveland Clinic, here I come! Either you will know what to do with me, or I can be your new case study while you figure out what to do with me.

 

I guess the only thing I can do is take it day by day and do my best to live life to the fullest while I navigate all this.


If you are reading this, and struggling with anorexia, excessive exercise or any eating disorder for that matter...get help now. Don't let it go on for years and years. The damage that takes place is extensive. 

 

On a good note, I planted some seeds last week and they are sprouting! I've lived in the city for ten years and have never planted anything! When I planted the seeds and then a few days later saw sprouts I was so giddy that it actually works, that I've been taking photos of them every day hahahaha! I've been asked to join the music team at the church we have been attending to fill in for the piano player who will be on vacation, so that's a huge win. I don't love the idea of standing on a stage like this in front of people, but hey, God will use me no matter what I look like, and honestly, playing piano with a band soothes my soul. We are also renovating our home and it's starting to really come together in a beautiful way. On the good days when I'm not so swollen and in pain I've enjoyed painting, and staining and designing and it's been really fun! I can't wait to have a wine night!

 

I just want to say thank you to everyone who reads my blog and gives me support. Blogging is honestly a huge outlet for me to process what I'm going through and connect with other people going through something similar. I love you all, and hey, will you pray for me?! I know that this will get better. I just know it.

 

xoxo

 

Sara

 

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