If you're friends with me on Facebook or glanced at my last post of status updates from 2013, you probably noticed that I have been sick quite frequently this year. In fact, this last hospital admission my mom called and said, "Could you please let us know what's going on before you post it on Facebook." Well, Mom... more Americans get their news from Facebook than any other news source. Not only that, my cell phone only has Internet service in the ER, so what else am I supposed to do to entertain myself?
Speaking of the Emergency Room, I have spent more than 14 hours there this year so far. Although I do not have an exact count (yet), including the blood glucose testing, I have had well over 100 needles in me since January. I've gone through 14 bags of IV fluids, three bottles of Ibuprofen, missed over 142 hours of work, and I don't even want to know how many days of 2013 I have spent in bed or on the couch.
With so many clinic, Urgent Care, and ER visits, you would think that I would have an answer to the what's going on with you question by now. Unfortunately, I don't know what is going on with me, but I do know what is not going on.
Back in August, I reluctantly hobbled into the ER believing that I was not sick enough to be there. I expected to be triaged to Urgent Care and sent home with, "You're fine and a waste of our time." When I sat down, the RN took my blood pressure and it was 146/92 with a heart rate of 95. My blood pressure is always between 110/70 to 120/80, so I was fairly surprised when she slapped the ID band on my arm and sent me to the ER.
I spent close to four hours in the ER hooked up to monitors as they pushed IV fluids through me. My heart rate was going back and forth between 70 and 140 and my blood pressure was going up and down just as fast. In the time I spent in the ER that day, I talked to a resident, an ER physician, and the physician that took over my care when I was admitted to the hospital. All three of these medical professionals interrogated me on my history of an eating disorder, my eating habits, my body image, and all three made it clear they didn't believe me when I told them I was no longer anorexic or bulimic.
Throughout the 37 hours I was hospitalized, I was encouraged to eat because that would make everything all better. At discharge, I was given a summary of my hospitalization. I had metabolic acidosis and severe dehydration listed on the sheet and was scheduled to follow up with my primary physician the following week.
I left the hospital around 10:00 that morning and ended up back in the ER at 3:30 that afternoon because my chest felt like it was being crushed every time I exhaled. The next ER physician I saw was obviously in a hurry to leave for the day. Without a very thorough exam, he decided it was "something musculoskeletal" and most likely caused from being down in bed for so long. And he left for the day. The RN was lucky enough to reach him in his vehicle so he could phone in a prescription for the pain and a muscle relaxer.
I've had issues with this same thing occasionally since then, but chest x-rays and the one EKG they did on a separate ER visit came back normal, so for goodness sake, just eat something Melissa and this will all get better.
At my follow up with my doctor, I asked how in the world I could have had metabolic acidosis. She never mentioned an eating disorder specifically, but did ask if I felt I needed to see a therapist. I laughed and without hesitating said no. I explained that my life is a great place. I love my job, I was diligently writing a book, and had no reason to see a therapist. I thought that was ridiculous, but blew it off. Well, I blew it off until I logged into my MyCare account to view my follow-up lab results. I happened to navigate into my hospitalization summary. The ER physicians that admitted me to the hospital neglected to put on my discharge summary that in addition to dehydration and metabolic acidosis, they also re-diagnosed me with anorexia.
I sent a message to my doctor stating how inaccurate this was. I had an eating disorder for 14 years and this is NOT the same thing. When you have an eating disorder label on your medical record, I have learned that there is no such thing as unintentional weight loss. No matter what other symptoms I have had, losing 50 pounds in a year is an automatic "Congratulations, you have relapsed! Do not pass go. Do not collect $200. Go directly back to treatment. And, for goodness sake... eat something and this will all go away!"
For two months now I have been trying to explain myself to countless physicians, friends, and family. After all, people with a history of any type of mental illness are liars, right? Obviously, I lie about my eating habits. Never mind that my blood sugar has been as low as 43 and as high as 256. Never mind my blood pressure has been as high as 174/107. For goodness sake, eat something and this will go away.
I landed back in the hospital on Sunday with the same symptoms as back in August. Again, the eating disorder was mentioned. How much are you eating? When are you eating? Are you drinking enough water? I went through close to 200 ounces of fluids at one point and still ended up in the ER needing two bags of IV fluids. Again, that eating disorder label is on my medical record, so I'm a liar. Therefore, no. I'm not drinking enough. I'm not even sick, actually.
Here I am, two months later and struggling to not lose anymore weight. I'm keeping detailed food records again, but making sure to add in everything else that is going on. The abrupt changes in heart rate, blood pressure, and blood glucose, my lack of energy, headaches, and a bunch of other crazy things that can only be fixed by eating something. Well, that's what they say, but I've been eating what I can, when I can, and this isn't all better, yet.
In this crazy process, we have discovered that I do not have an adrenal gland tumor, I don't have diabetes, and my thyroid is functioning properly. I've been referred to an Endocrinologist, I have another post-hospitalization follow up with my physician next week, and, because they still think this is anorexia, they set me up with a consultation with a nutritionist.
This last year, I have heard so many patients tell me their stories of how they are treated (or mistreated, I should say) by health care providers. When I had to shadow an ER social worker for my position a few months ago, I witnessed it first-hand. I have experienced it myself. I can't go into the doctor for an ear infection without being asked, "Are you eating enough?"
So, no. I don't know what is going on with me. Here is what is NOT going on. I am not obsessed with my weight. When I look in the mirror, I don't see myself as needing to drop a few more pounds. In fact, the morning I went into the ER this last time, I stood in just a bra and underwear and was disgusted. I have been at this weight before and the last time I was this size, I was sick. But, it was a very different kind of sick. What I see in the mirror right now is not distorted. I know how bad I look, how bad I feel, and know that there is something going on that simply "eating something" isn't fixing. I've lost a tremendous amount of muscle and miss my quality of life.
I started writing a memoir about my eating disorder last year. I haven't touched it since this all began in August because I started fearing the doctors might be right and the book was triggering me into a relapse. Well, I know that is not the case. The longer this goes on, the more annoyed I become. My goal with this book was to tackle this stigma that is tied to mental illness, but it is becoming much more than that now. I've heard way too many stories of people going through the same thing and being "labeled" and it's not right. I certainly had plenty of material to work with before this all started and did not need another section to add to the book, so my deadline has been extended. When this is all over with and I'm back to playing music gigs and not drowning in my clothes, I'm going to be a force to be reckoned with.