I am not really struggling as much as you might guess from my last post, which was written in a fit of emotion after getting home from yet another unsuccessful, unproductive appointment with a specialist. I suppose I had just gotten my hopes up more than was realistic that I would FINALLY get some answers and FINALLY have a real plan of action. I left the hospital on Tuesday morning, had a good cry in my car, went to Dr. P's office, had a good cry on her couch, came home, had a good cry via angry/frustrated/sad word-puking on Blogger, called Mama Bear and had a good cry to her, and then promptly put my thinking cap on and went back to the drawing board.
Next steps:
— Find a good primary care doctor. Believe it or not, I haven't had a regular GP in three years, which was when my pediatrician referred me to an outside ED clinic. From there on out, it's been specialists all the way: ophthalmologists, orthopedists, gastroenterologists, psychologists, psychiatrists, gynecologists, and pain management specialists. I had thought that the rheumatologist would be the one to put all the pieces together and figure out the real story, but obviously that didn't happen. And by this point, I am so overwhelmed and burnt out and frustrated and confused that I simply can't manage the sheer level of persistence and self-advocacy that goes into getting referrals, appointments, records releases, record transfers, insurance appeals, and insurance coordination (because I am covered in part by both my university plan and the family plan from my dad's company - I know, I know...#firstworldproblems: I have too much health insurance).
So I need someone to keep track of everything, seek out the best specialists, get me in to see who I need to see, and basically do a lot of the legwork/coordinating/advocating for me.
—Look into getting appointments with the following: pain specialty clinic in Big City up north, as recommended by the new gynecologist I saw last week; an allergist/immunologist at University Hospital here in College City, as recommended by the rheumatologist on Tuesday; and an endocrinologist at University Hospital, because my gut tells me that huge hormone deficiencies, shifts, and imbalances over the past two years have caused the majority of my problems. I've always deferred to the professionals and not wanted to offer my own thoughts or suggestions since I haven't been to medical school and know very little about how the human body works...but at this point, I figure there's nothing to lose by casting a wide net.
—Keep up with the basics: eat well, limit exercise, stay open and honest with Dr. P, keep up the coping/distraction methods, and maintain a social life. It'll only help, you know?
Okey doke, I have to make a Walgreens run for eye drops before work. Happy Thursday everyone, stay cool if your weather is anything like College City's today.
Thursday, July 18, 2013
Tuesday, July 16, 2013
Rejection and Now What?
Well, I suppose the rheumatologist wasn't a TOTAL stranger, since I'd known her for twenty-five minutes before she rejected me. But the Bank of America rep was definitely a stranger when he rejected me for a credit card within six seconds of answering the phone.
Yes, I saw a rheumatologist this morning, at long last—it took a million pushy phone calls, hours waiting on hold, and lots of printing/copying/faxing records. Only had to wait three months for the appointment, but I figured they would at least find something treatable that might explain all the awful symptoms I'm having—pain, fatigue, dry eyes, infections, and migraines. But no. I spent twenty minutes answering questions and going over my past lab results with the doctor, then she left the room to consult with the chief resident, who came in to inform me that my problems are not rheumatology-related.
Well, great. Really glad I went to all this trouble to get the appointment. I mean, in all seriousness, it is good news that have no autoimmune or connective tissue disorders (e.g. lupus, Sjogren's, or rheumatoid arthritis). But who the fuck else am I supposed to see now? I don't have a primary care doctor because they all just refer me out to specialists, who are all baffled. The rheumatologist suggested the next step might be an allergist/immunologist to see if there might be a problem there.
In the meantime, any and all thoughts—no matter how crazy—are welcome. I have no idea where to go from here. Is there even an underlying systemic issue? Hormone issue, immune system issue, metabolic/thyroid issue...or do I just have the worst luck ever, and have managed to accumulate multiple distinct, rare, unrelated conditions? Is it just a matter of having abused my body for too long by starving and running and not sleeping, and now I'm paying the price? The gynecologist I saw last week (a wonderful guy, but not super knowledgable about pelvic pain disorders) recommended a speciality pain clinic in Big City a few hours from here, which is a drive I'd definitely be willing to make if it seemed worth it, but of course the wait time for an appointment is 3-6 months.
I'm just really not making it. My work hours now are flexible enough that I can nap pretty much every day, but I'm starting school in five weeks and my schedule is going to change dramatically. Advil, Tylenol, and Aleve no longer work for my headaches, and I've occasionally resorted to the leftover Vicodin from my wisdom tooth surgery....probably not smart, but I'm at a loss.
ARGH. Sorry, didn't mean to make this so negative and I probably shouldn't post after doctors' appointments anyway, since I will invariably be in a foul mood. But I don't talk about this with people in real life, and sometimes I just need to spew in frustration.
Yes, I saw a rheumatologist this morning, at long last—it took a million pushy phone calls, hours waiting on hold, and lots of printing/copying/faxing records. Only had to wait three months for the appointment, but I figured they would at least find something treatable that might explain all the awful symptoms I'm having—pain, fatigue, dry eyes, infections, and migraines. But no. I spent twenty minutes answering questions and going over my past lab results with the doctor, then she left the room to consult with the chief resident, who came in to inform me that my problems are not rheumatology-related.
Well, great. Really glad I went to all this trouble to get the appointment. I mean, in all seriousness, it is good news that have no autoimmune or connective tissue disorders (e.g. lupus, Sjogren's, or rheumatoid arthritis). But who the fuck else am I supposed to see now? I don't have a primary care doctor because they all just refer me out to specialists, who are all baffled. The rheumatologist suggested the next step might be an allergist/immunologist to see if there might be a problem there.
In the meantime, any and all thoughts—no matter how crazy—are welcome. I have no idea where to go from here. Is there even an underlying systemic issue? Hormone issue, immune system issue, metabolic/thyroid issue...or do I just have the worst luck ever, and have managed to accumulate multiple distinct, rare, unrelated conditions? Is it just a matter of having abused my body for too long by starving and running and not sleeping, and now I'm paying the price? The gynecologist I saw last week (a wonderful guy, but not super knowledgable about pelvic pain disorders) recommended a speciality pain clinic in Big City a few hours from here, which is a drive I'd definitely be willing to make if it seemed worth it, but of course the wait time for an appointment is 3-6 months.
I'm just really not making it. My work hours now are flexible enough that I can nap pretty much every day, but I'm starting school in five weeks and my schedule is going to change dramatically. Advil, Tylenol, and Aleve no longer work for my headaches, and I've occasionally resorted to the leftover Vicodin from my wisdom tooth surgery....probably not smart, but I'm at a loss.
ARGH. Sorry, didn't mean to make this so negative and I probably shouldn't post after doctors' appointments anyway, since I will invariably be in a foul mood. But I don't talk about this with people in real life, and sometimes I just need to spew in frustration.
Sunday, July 14, 2013
Watching and Weighing
As mentioned earlier, I joined a gym and have been working out LIGHTLY for the past week or so. I have found that the recumbent bikes are relatively comfortable and don't seem to be making anything any worse, whereas running still makes my hips and back hurt a lot. So! Hopefully for the long haul, I will be able to get back into some sort of fitness routine.
As you may recall, I've grappled with the exercise issue a LOT in the past. I love love love working out because of how it makes me feel, and I have the best, most wholesome, non-ED intentions in the world about getting back into it. But of course, things are never that simple. I made a promise to myself last week that I wouldn't go to the gym two days in a row...of course, the first workout made me feel so amazing that I went again the next day. And on the third day. On the fourth day, I wasn't able to go because I didn't have time; as a result, I spent the entire day feeling lazy and fat and unaccomplished. I pondered cutting calories. I didn't, but I thought about it.
I've made it over a year with zero cardio, and then three days in I suddenly feel like I can't live without it. HI ANOREXIA, THANKS.
That being said, I was able to get myself over that little snag pretty quickly. I took two days off, then worked out two more days in a row. Dr. P and I discussed how three days a week would be a good self-imposed maximum for now, so I only exceeded it by one day. Not SO bad, right? Way better than the X hours X days a week I used to do, which is probably what got caused such a major medical mess in the first place.
Anyways, the best part is that I've been thinking about exercise in a whole new way. It really has no connection to weight loss or caloric burn at this point; I'm just so grateful to be MOVING again, mostly without pain, that my weight hasn't really entered the equation. It is quite freeing, actually, to be pedaling away and not worrying about how much farther, how much longer, how many more calories.... In fact, sometimes it seems like I'm the least weight-conscious person in the gym. See, the bikes are set up right in front near the entrance which is also where they keep—you guessed it—the scale. So as I'm sitting there huffing and puffing, I get to see everyone walk in, scan their membership card, and step on the scale.
It's bizarre, actually. Bizarre Thing #1: I would NEVER EVER EVER IN A MILLION YEARS weigh myself in public. I weigh myself at home, in my underwear, first thing in the morning after I've peed and before I've had anything to eat or drink. Which brings me to Bizarre Thing #2: People weigh themselves in sneakers, sweatshirts, holding a water bottle, holding onto the nearby counter for balance, while talking on the phone...you name it, I've seen it. How are they not obsessed with precision? How are they comparing numbers from one day to the next, with so many variables? And finally, Bizarre Thing #3: The scale looks about 100 years old. No way that thing is calibrated correctly.
In conclusion, maybe I am still a little obsessed with weight. But at least not my own!
EDIT: To the person who e-mailed earlier today asking about medical stuff, your message randomly disappeared from my inbox...could you resend? Thanks, hope you see this!
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| source |
As you may recall, I've grappled with the exercise issue a LOT in the past. I love love love working out because of how it makes me feel, and I have the best, most wholesome, non-ED intentions in the world about getting back into it. But of course, things are never that simple. I made a promise to myself last week that I wouldn't go to the gym two days in a row...of course, the first workout made me feel so amazing that I went again the next day. And on the third day. On the fourth day, I wasn't able to go because I didn't have time; as a result, I spent the entire day feeling lazy and fat and unaccomplished. I pondered cutting calories. I didn't, but I thought about it.
I've made it over a year with zero cardio, and then three days in I suddenly feel like I can't live without it. HI ANOREXIA, THANKS.
That being said, I was able to get myself over that little snag pretty quickly. I took two days off, then worked out two more days in a row. Dr. P and I discussed how three days a week would be a good self-imposed maximum for now, so I only exceeded it by one day. Not SO bad, right? Way better than the X hours X days a week I used to do, which is probably what got caused such a major medical mess in the first place.
Anyways, the best part is that I've been thinking about exercise in a whole new way. It really has no connection to weight loss or caloric burn at this point; I'm just so grateful to be MOVING again, mostly without pain, that my weight hasn't really entered the equation. It is quite freeing, actually, to be pedaling away and not worrying about how much farther, how much longer, how many more calories.... In fact, sometimes it seems like I'm the least weight-conscious person in the gym. See, the bikes are set up right in front near the entrance which is also where they keep—you guessed it—the scale. So as I'm sitting there huffing and puffing, I get to see everyone walk in, scan their membership card, and step on the scale.
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| source |
It's bizarre, actually. Bizarre Thing #1: I would NEVER EVER EVER IN A MILLION YEARS weigh myself in public. I weigh myself at home, in my underwear, first thing in the morning after I've peed and before I've had anything to eat or drink. Which brings me to Bizarre Thing #2: People weigh themselves in sneakers, sweatshirts, holding a water bottle, holding onto the nearby counter for balance, while talking on the phone...you name it, I've seen it. How are they not obsessed with precision? How are they comparing numbers from one day to the next, with so many variables? And finally, Bizarre Thing #3: The scale looks about 100 years old. No way that thing is calibrated correctly.
In conclusion, maybe I am still a little obsessed with weight. But at least not my own!
EDIT: To the person who e-mailed earlier today asking about medical stuff, your message randomly disappeared from my inbox...could you resend? Thanks, hope you see this!
Friday, July 12, 2013
Friday Night Lamsies
Yes, I am sitting home alone BLOGGING on a Friday night, sue me. I'm not even ashamed of my lameness, because I'm too sleepy to care. What a day! I didn't get home until late last night and then couldn't sleep due to residual road rage—my friends and I were leaving this big shindig downtown and the traffic was insane. Yours truly was driving and College City got to see my, um, aggressive side. Sorry not sorry...other cars weren't letting me make a left turn! Had to stick my nose out. Anyways, I tossed and turned all night long until about six, when I finally gave up, got up, and made my coffee. At eight, I headed out to my psychiatrist appointment (Hi Dr. L!). It was nice to have a doctor's appointment include twenty minutes of pleasant conversation rather than power struggles and confusion and frustration. Dr. L said I was "easy." Doctors never think I'm easy! It was a thrill. Oh, get your minds out of the gutter. You guys are gross.
After that, I headed straight to the gym, biked dutifully for my 20 minutes (forgot to mention to you guys that I am now able to ride the upright stationary bikes almost pain-free! Trying hard not to overdo it....), and went back out to my car—which made a horrible ugly scraping sound and only started after three tries. Naturally, I freaked out, started to dial my mother when I realized that was illogical and not very mature of me, and instead dialed my mechanic. Long story short....my poor boy Sam needs a new starter, which is going to set me back $200-300. JOY.
After that unexpected adventure, I raced home, showered in approximately 17 seconds and the answer is no I did not shave and went to work. By noon, I was facedown on my desk, slowly losing consciousness.
So I'm a smidge worn out, otherwise I'd write more about my conversation with Dr. L, all about the great new doctor I saw yesterday, my thoughts/fears/excitement about being able to get some exercise again, the craziness coming up next week, and how I have barely FIVE weeks left until school starts.
Hope everyone is having a lovely Friday! More later, this kid is off to veg.
After that, I headed straight to the gym, biked dutifully for my 20 minutes (forgot to mention to you guys that I am now able to ride the upright stationary bikes almost pain-free! Trying hard not to overdo it....), and went back out to my car—which made a horrible ugly scraping sound and only started after three tries. Naturally, I freaked out, started to dial my mother when I realized that was illogical and not very mature of me, and instead dialed my mechanic. Long story short....my poor boy Sam needs a new starter, which is going to set me back $200-300. JOY.
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| source |
After that unexpected adventure, I raced home, showered in approximately 17 seconds and the answer is no I did not shave and went to work. By noon, I was facedown on my desk, slowly losing consciousness.
So I'm a smidge worn out, otherwise I'd write more about my conversation with Dr. L, all about the great new doctor I saw yesterday, my thoughts/fears/excitement about being able to get some exercise again, the craziness coming up next week, and how I have barely FIVE weeks left until school starts.
Hope everyone is having a lovely Friday! More later, this kid is off to veg.
Wednesday, July 10, 2013
Gym Membership Ordeal
Oh my god you guys, I am SO flustered. I just tried to join a gym near my apartment (since I no longer have free access to my university fitness center, DAMN THEM) and those sleaze bags at the front desk got me all mixed up with the millions of different membership packages and all their nosy questions. I knew ahead of time which one I wanted (simplest, cheapest) but the guy kept pressuring me about personal training and group classes and other fancy stuff that I did.not.want. Then he asked me to fill out this stupid questionnaire about my "fitness goals" and "exercise history" and "work-out plan." I left some of the questions blank, but then he started asking me about everything I'd skipped...and I was NOT about to explain the whole anorexia/muscle atrophy/nerve pain/tissue damage shebang with him, so I started rattling off half-formed lies about vague illnesses and injuries and being too busy for exercise. The guy must have thought I was off my rocker. Better than telling the truth, I suppose!
So anyway, I FINALLY got myself signed up for the plan I wanted ("Are you sure you don't want to pay $99 and upgrade to get the four personal training sessions, ma'am?" "Yes, I'm sure." "Really? Really really sure?" "REALLY FUCKING SURE, SIR. THANKS.") when they sent me over to meet with some OTHER guy, who apparently schedules a "consultation" with every new member. So I was like, sure yeah, whatever, why not? Well, whaddya know, this "consultation" includes all of but not limited to the following:
— body fat measurements
— height, weight, and BMI calculations
— fitness assessment including endurance, strength, and agility
— healthy eating plan
Inside I was freaking out like oh heck no, how am I gonna get out of this one?? I kept trying to politely decline the "consultation," but the guy simply WOULDN'T LET ME. These were evil genius salesmen, I'm telling you. So now I have a fitness assessment with Jermaine, who is approximately six-foot-three with biceps the size of small love seats, on July 22 and I have until July 21 to concoct a way to get out of it.
Monday, July 8, 2013
Back to Real Life and Summer Goals
I am still a little wiped from the past couple weeks of hostessing/family reunionizing...plus today was an absolutely crazy day at work followed by tutoring, grocery shopping, and laundry. I am way behind on updating here, reading blogs, and answering e-mails, but working hard to catch up so bear with me!
Oh sheesh, so much to update about! My mom left this morning. We had an awesome visit, but I am definitely glad to have the apartment to myself and get back into my own routine again. I think I swung from one extreme to the other this summer: a month of too much alone time followed by two weeks of ZERO alone time. Goal for the rest of the summer: find a balance.
Other goals:
—Finish Season 2 of Homeland. I'm obsessed.
—Write in my journal regularly—maybe 2-3 times a week? Call me old-fashioned, but I think there's something therapeutic about shutting the laptop and putting pen to paper once in a while.
—Cook dinner at least three nights a week. I hate cooking and I'm really terrible about planning meals, but I think that eating a balanced, varied diet is probably one of the best things I can do for my body right now. Time to quit being lazy and start being an adult! Make those veggies, K!
—Decorate my walls. I had a reputation among my friends for never decorating my rooms in college; I'd had posters and pictures that sat in the corner collecting dust all year long because I was too lazy to get out the blue tape and put them up. But now that I have my own place, I really want to do my best to make it homey and attractive. Now all I need to do is borrow a hammer.
—Bake cookies and EAT ONE. I love baking, but always end up giving everything away. No more!
Speaking of food, it's getting to be dinnertime and my tummy is a-rumbling. Alas, I can't start fulfilling my dinner-cooking goal just yet because Mama Bear made me about a week's worth of steak, veggies, and bread yesterday. Then she vaguely mentioned coming out again for a weekend visit sometime this fall for the sole purpose of cooking for me. You know your mother is worried you aren't eating enough when...
Any else have any summer goals? I suppose it would have been more logical to set goals back in January, but with graduating, starting a new job, and moving into my new apartment, this feels more like a new beginning.
I think I am going to do a separate update at some point on all my appointments and therapy/medical stuff because there is way too much for me to keep straight at this point. Stay tuned; I know you will all be awaiting my return with baited breath. For now, I gotta go get me some red meat.
Oh sheesh, so much to update about! My mom left this morning. We had an awesome visit, but I am definitely glad to have the apartment to myself and get back into my own routine again. I think I swung from one extreme to the other this summer: a month of too much alone time followed by two weeks of ZERO alone time. Goal for the rest of the summer: find a balance.
Other goals:
—Finish Season 2 of Homeland. I'm obsessed.
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| source |
—Write in my journal regularly—maybe 2-3 times a week? Call me old-fashioned, but I think there's something therapeutic about shutting the laptop and putting pen to paper once in a while.
—Cook dinner at least three nights a week. I hate cooking and I'm really terrible about planning meals, but I think that eating a balanced, varied diet is probably one of the best things I can do for my body right now. Time to quit being lazy and start being an adult! Make those veggies, K!
—Decorate my walls. I had a reputation among my friends for never decorating my rooms in college; I'd had posters and pictures that sat in the corner collecting dust all year long because I was too lazy to get out the blue tape and put them up. But now that I have my own place, I really want to do my best to make it homey and attractive. Now all I need to do is borrow a hammer.
—Bake cookies and EAT ONE. I love baking, but always end up giving everything away. No more!
Speaking of food, it's getting to be dinnertime and my tummy is a-rumbling. Alas, I can't start fulfilling my dinner-cooking goal just yet because Mama Bear made me about a week's worth of steak, veggies, and bread yesterday. Then she vaguely mentioned coming out again for a weekend visit sometime this fall for the sole purpose of cooking for me. You know your mother is worried you aren't eating enough when...
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| Thanks Mom! |
Any else have any summer goals? I suppose it would have been more logical to set goals back in January, but with graduating, starting a new job, and moving into my new apartment, this feels more like a new beginning.
I think I am going to do a separate update at some point on all my appointments and therapy/medical stuff because there is way too much for me to keep straight at this point. Stay tuned; I know you will all be awaiting my return with baited breath. For now, I gotta go get me some red meat.
Saturday, July 6, 2013
Post Craziness Check-In
I know that I haven't updated in forever but I am way too flustered and spent to write a complete one tonight. Things have been crazy, overwhelming, stressful, fun, and emotional. I've been playing houseguest for two full weeks (first my former roommate, then my mom) and while I love love love them both to death, I am SO OVER IT. The zero privacy, zero alone time, eating in restaurants all the time, huge family gatherings, etc. My mom's side of the family all met out here for a joint reunion/July 4th celebration/60th birthday party for my uncle the other night, so we've also been having tons of extended family time—which is all great, I love my aunts and uncles and cousins, but gosh I am so ready to get some privacy again. My apartment has been serving as a sort of home base/meeting place for everyone, so I've basically been passing my keys around and letting people come and go as they need. THE CONTROL FREAK IN ME IS LOSING IT.
On the plus side, I've gotten spoiled rotten by Mama Bear this past week and eaten lots of interesting, exotic foods. My body image is ehhh not so great but I'm dealing. Eating out all the time, off my schedule, and different foods has me feeling pretty fat and icky. Haven't weighed myself since before everyone got here, and I'm not really in any hurry to get back on the scale. I was having a really hard time last week dealing with my friend visiting, but things have gotten a little better since then. It definitely helped to have my mom here. More on this later, but I brought her to my therapy appointment—one of the best ideas I've had in a long time! She absolutely adored Dr. P, and it felt really good to open up to both of them, and get everybody on the same page.
For the most part, things are going pretty okay now. I've got lots of doctors' appointments coming up in the next two weeks and I am REALLY looking forward to getting some stuff figured out. Everyone cross your fingers and say a little prayer that I don't have anything incurable or degenerative or anything like that. Happy belated Fourth of July!
On the plus side, I've gotten spoiled rotten by Mama Bear this past week and eaten lots of interesting, exotic foods. My body image is ehhh not so great but I'm dealing. Eating out all the time, off my schedule, and different foods has me feeling pretty fat and icky. Haven't weighed myself since before everyone got here, and I'm not really in any hurry to get back on the scale. I was having a really hard time last week dealing with my friend visiting, but things have gotten a little better since then. It definitely helped to have my mom here. More on this later, but I brought her to my therapy appointment—one of the best ideas I've had in a long time! She absolutely adored Dr. P, and it felt really good to open up to both of them, and get everybody on the same page.
For the most part, things are going pretty okay now. I've got lots of doctors' appointments coming up in the next two weeks and I am REALLY looking forward to getting some stuff figured out. Everyone cross your fingers and say a little prayer that I don't have anything incurable or degenerative or anything like that. Happy belated Fourth of July!
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