B is for Boring

I need a hobby. I have decided that I'm unusually boring these days. Sitting in my bed feeling sorry for myself makes me feel icky, like I'm wasting space. I feel like I was more of a human when I was active in my eating disorder. I need to figure out how to get that person back ... sans eating disorder, of course.
I had this project once, that I worked on every night when I didn't sleep. Instead of laying lame in my bed staring at the ceiling I sat on my floor, spread out all my art supplies, turned on my music and went to town. It was meditative for me, calming. A way to express what I was feeling without having to speak. I had it for at least 10 years and then one day I just stopped. I don't even know where it is. Tonight I'm going to start my project over. I'm going to start being more interesting in my life.
Kidney update: Barf, I don't even want to talk about it.
What I don't miss about my eating disorder this far in my recovery today: Not sure. I'm kind of a Negative Nancy today so I'm drawing a blank on the positives.
What I'm not going to miss about my eating disorder when I'm recovered: Obviously the boring me. I need more substance, so I'm going to create it. And Ensures, I'm still sick of Ensures.

To Blog Or Not To Blog ...

I went on a blogging hiatus while I tried to figure out the delicate balance between recovering from an eating disorder and being a kidney patient. Most of the time I end up shutting it all out by compartmentalizing, putting it away in my head and just going through the motions, staying in this weird limbo. How can I honestly say that I'm doing everything I can to save my kidney when I still suffer from eating disorder? Am I recovering? You bet your ass I am. But it isn't possible to just get over an eating disorder, simply because I now have a new diagnosis. If I could just get over it, I wouldn't actually have an eating disorder and we'd be discussing a problem that doesn't actually exist. 

I'm not perfect and I'll call you a liar and tell you that you don't actually know me if you think I am. But I'll do the same if you don't actually think that I'm giving it my all and doing the best that I can. If it were as simple as picking up a hamburger and going to town on a plate of french fries then by all means, fire up the grill and pass the ketchup ... but I think we all know it doesn't work that way. 

Today I met with my nephrologist (kidney doc) and received my referral to the vascular surgeon for a preoperative vascular access/dialysis evaluation. I was also officially referred for transplant. Transplant. AYFKM? I've been an eating disorder patient my whole life (well 2/3rds of my life) and these are words that I feel should not be in my vocabulary. I don't know how to be a kidney patient. 

Scarlett says I have to separate the two, so I'm going to work on doing that. Maybe the key to getting through this is realizing that I can be an eating disorder patient working on my recovery AND a kidney patient starting the road to recovery via dialysis and/or (hopefully or) transplant. It'll be kind of like ... multi-tasking. Anyway, I think I'll stick to blogging during this process because I do not want to lose ground in my eating disorder recovery. I need to make sure I don't let my eating disorder become the way I cope with my kidney and I also need to make sure that my eating disorder recovery does not get lost to my kidney recovery. Let the multi-tasking begin.

What I do not miss about my eating disorder at this point in my recovery: Not having control over my thoughts. I love that I can break away from the eating disorder chaos in my brain and think about other things, future plans. I like that I can have day dreams about something other than an eating disorder related issue or thought. And I love that it happens naturally and I can experience what it feels like to have moments of freedom.

What I am not going to miss about my eating disorder once I'm recover(ed): Being denied a fun afternoon jogging around Greenlake with my friends and then going to eat frozen yogurt afterwards. When I'm recovered, I'm going to go to run  Greenlake every day, and I'm going to run with a handful of crab cakes from Tom Douglas' restaurants, and I'm going to do it in neon green shoes, because I can.

Destination Recover(ed): Day 676

Ok, I've been putting off writing this blog because I want it to be perfect. I had the most special spectacular day a week and a half ago and it was such an emotional and perfect day that I'm having a hard time putting words to my feelings in such a way that I can perfectly express how and what I was feeling. But I'm realizing that my need for perfection is what is constantly holding me back. So I'm just going to dive in and hope that I can get it across without jumbling it up and rambling on too much :) so bear with me here ...

 

So I had a spectacular day last week. It has taken me a while to blog about it because I had a difficult time wrapping my head around it to put words to my feelings. So that day started off as a not so good day. I had just left a particularly emotionally difficult appointment with Sandy. EMDR is fucking hard and it's so incredibly taxing on my body. I leave those appointments with the same empty euphoric feeling I used to crave when starving. The "nothingness" feeling. Empty. Only now instead of reveling in the feeling as "success" or "comfort" my brain instead automatically screams "Jesus Christ! I need an Ensure STAT!" (yay for small proofs of recovery!). So I show up for my appointment with Scarlett right after my appointment with Sandy and I'm beat. I'm exhausted. Trauma work is never fun, so I'm a little emotionally blah, not exactly feeling super awesome. I had just spent the last hour and a half realizing that I am affected by my sister's pregnancy in a traumatic way. That while I am so excited and proud and ecstatic and anxious and thrilled and happy, it brings up trauma issues for me. And no matter what I want or how I tell myself I feel, I'm not getting away from the underlying trauma. I can still be happy and excited for my sister, and be traumatized by it at the same time. But I can't pretend that it doesn't bother me, that it doesn't trigger trauma for me just because I don't want to deal with it. I don't want to go there or process it because I don't want to relive it, but there's no denying it and I'm coming to terms with the fact that I have to deal with it even though I don't want to. So it had been "that kind of a day" when I walked in the door at Ramey Nutrition. It actually kind of makes the whole day perfect actually. To have such a wide spectrum of emotion all in the same day and survive it as one of my most favorite days of my life ... it really makes it that much more fucking awesome of a day. Complete. So I had been set up to know that there was something special that was going to happen at my appointment with Scarlett, so I knew that going in but I never thought or expected what was going to happen. Appointment is going as normal and I'm giving the Scarlett the play by play from my appointment with Sandy, discussing intake and body image issues and then ... AND THEN ... there's the knock at the door ... and in walks this guy, who I recognize from Scarlett's pictures on Facebook, and I know his name but I've never met him before. So I'm a little confused as to what is going on and wondering why he's coming in and joining my appointment. I mean, not like "WTF is he doing here", but more like "I wonder what is going on". I won't give his name because I didn't tell him I was going to blog about him, but I so want to tell the world how awesome he is and how he touched my life and filled my soul. He was there because he reads my blogs and wanted to do something for me. What makes it so emotional for me is that I never fully realized how far this blog goes and how many people are reading it and how many people it's helping, whether it be support for someone with an eating disorder or just bringing to light what it's like for someone who doesn't have an eating disorder. A piece of my life and journey that one wouldn't otherwise know anything about. So in one of my blogs I wrote about not looking forward to winter because of the cold and what it felt like to be so cold because of my eating disorder. If you suffer from an eating disorder, you know what I'm talking about ... the cold gets down into your bones and you just can't warm up. Your body is tense all the time and it's exhausting. It's painful. My lips turn this purplish blue and feel like I look as though I'm being preserved on ice. It wears you down. I hate it. You don't have to have an eating disorder to know what this feels like either and it was something that he could identify with. So, as the story goes, my blog affected him. It's weird, it's like my life, what I go through as an every day thing affected the life of someone I don't know, have never met or crossed physical paths with. It's a concept I'm still wrapping my head around. To me, it's just my life, it's what I go through every day so nothing I do or say or write seems profound to me because it's just the way it is, it's just the way things go and I'm just writing about it. So he decided that he wanted to do something and here he was sitting across from me telling me how he reads my blog and explaining how he felt and how he wanted to get me something and he pulls out this coat. But it's not just a coat, it's an awesome coat, a coat that was special made. A coat that he had to call around to different companies to find someone who would help him with this coat. He read everyone he called my blog until he found someone that wanted to help him. (on a side note this coat did NOT come from REI who could care less and didn't want to help and now there is a year long boycott against them ...) A coat, because I get cold and I'm not looking forward to winter. A coat because he knows what it's like to feel that cold, even without having an eating disorder. Now I don't know how to articulate my emotions from this point. It's so much more than a coat. I mean, to have someone you don't even know do something so profound that you can't even speak ... it's surreal. To not have to worry about the cold this year because this coat is so fucking warm and enveloping and to have one less thing to worry about, to not have to dread that pain ... I'm just so touched. It's more than a coat to me. I feel safe in it. It's my armor. I've had a few rough days since then and in the midst of crying and dealing and feeling just so defeated and emotional, I put my coat on and curled up and created this safety nest inside my coat. And it may sound ridiculous, but I don't really care.  I updated my Facebook status that night (yes I'm a FB'er) because I felt this overwhelming gratitude and I needed to get it out but all I could say was this:

 

November 14 near Stanwood

At the moment I am at a loss for words to describe the most amazing day I have had. Today I feel beyond honored and blessed, enveloped by love and safety and truly inspired and motivated. I wish I could find the words to express the immensity of my emotions but for now I will revel in the comfort and joy of knowing that everything is exactly at should be and everything is going to be just fine. Thank You, with all my heart.

 

So I wanted to blog about it so I could say Thank You, you have truly touch my life in ways I may not ever be able to fully express ... and you have warmed my soul and made such a profound impact on my heart and will always be remembered for for helping me to my ultimate destination: recover(ed).

One of the best days of my life.

Realities of Bulimia: Between Life and Death Part 2

Eye opening reality of what Bulimia is truly like, when it takes someone's life.
Eating disorders are a very harsh reality of our culture and here at Ramey Nutrition, it is important that we are doing everything we can to bring awareness to this life threat, prevent all development of eating disorders that we are able to access, support those in treatment, and love them into recovery, supporting their recover(ed).
http://youtu.be/OybG3m92Rt8

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Caffeine and Fibromyalgia

Caffeine, I must admit, is a uniquely cultural and ever increasing part of our lives. From the 30 oz. Trenta size that Starbucks is now offering to the increased 20 oz. Red Bulls, we are faced with more caffeinated options than ever before. Currently, having to restrict my own caffeine intake due to stress issues has been enormously upsetting to my soul; and no one understands the love and passion around this sweet molecule than yours truly.

Research done on the health benefits of coming off caffeine, done in a stupor of de-caffeinated exhaustion, has led me to some interesting findings that I'd invite you to consider, as you sip your quad/short/soy/extra foam/latte. Doing this research was purely an effort to find any benefit remotely close to the benefit I feel when blissfully caffeinated. Just so we are clear, this research NEVER would have been entertained had I been able to have the substance my soul so tragically misses. Fibromyalgia, however, is a condition that has provided many, here at Ramey Nutrition, with unexplained pain and discomfort that seems to top charts on pain scales everywhere, and keeps me in a constant state of research for relief options.

Fibromyalgia, a relatively new discovery in the medical world, is a condition where patients have reported symptoms of chronic widespread pain, intolerance to pressure, debilitating fatigue, sleep disturbances, bowel and bladder abnormalities, numbness and tingling, depression, anxiety and stress-related disorders such as posttraumatic stress disorder. A Ramey Nutrition patient recently reported, “…the pain is so intolerable, I don’t want to take a bath, because the water pressure hurts. I hate this!”

How does caffeine enter the equation, you ask? Fibromyalgia is believed to be medically linked to brain chemical imbalances that control mood, and is often accompanied by chronic fatigue. Obviously, you can see how a patient with fibromyalgia would migrate toward anything with a stimulant-like effect, and the stimulant most widely used, legal and available, is caffeine.

Without fibromyalgia, the normal mechanism of caffeine works by increasing the density of serotonin receptors, giving us a sense of euphoric energy. A 1993 study on mice published in "Cellular and Molecular Neurobiology" notes that density of certain serotonin receptors in the brain, including 5 HT1 and 5 HT2 serotonergic receptors, increase by 26 to 30 percent when mice take in an equivalent dose of 100 mg caffeine per 2.2 lbs. body weight a day.

Right about now you're probably midway through that quad/short/extra foam/soy latte thinking, "Well that sounds like a cure to me!" As it was mine, if this is your thought, please continue reading with caution...

When there is a serotonin deficiency, which is likely in fibromyalgia, the use of caffeine starts to require ever increasing amounts in order to produce the same effect. Patients often find themselves with depression if not adequately caffeinated, and as the need for the drug increases, the signs and symptoms of depression present themselves in greater intensity. This increased need tends to spiral downward into a cycle of over-stimulation of the nervous system, and exacerbation of chronic fatigue syndrome.

Either insomnia ensues, when caffeine's half-life lasts through what should be REM sleep, or unending fatigue sets in when the nervous system crashes without its beloved drug. As the nervous system, which is stimulated to feel more pain than normal, is over-stimulated by caffeine, pain tends to become exorbitantly unbearable.

“Caffeine is a loan shark for energy. We recommend not using a lot,” says Kent Holtorf, MD, founding medical director of the Fibromyalgia and Fatigue Centers, located across the country.
Getting on this roller coaster of increased pain, fatigue, and depression, just to get a short, false sense of euphoria, which quickly tends to turn its ugly head toward barely awake, might not be worth it.

Again, I write this from a catatonic state of sober melancholy, wishing I had a quad/short/soy/extra foam/latte in my hot little hands. This should assure you that this is not written from a "natural healing perspective," or that I am someone who believes caffeine to be anything but beautiful, and lifesaving. Those with fibromyalgia, however, might entertain the idea that getting off of it (God forbid), might alleviate pain, fatigue, and depression, so prevalent in this disorder.

-Scarlett Ramey, MS, RD, CD
President and CEO of Ramey Nutrition