Surfacing After Silence

Life. After.

Intentional Acting

14358754_10101428559527125_201134823500979566_nThis time of year is always difficult for me.  I have come to accept that life in general will be  . . . interesting during the winter months.  This year, however, I made some changes to my routine to make sure this would be a successful winter.

DBT (dialectical behavior therapy) and I agree on most things, but not so much on a few things.  I have learned a significant amount about taking care of myself, however.  A relatively new concept if you look at my life as a whole.  This year, I decided that, above all else, I would make sure I went to bed and woke up on a regular schedule.  This meant saying “the world won’t end if I don’t finish grading these papers tonight” and asking “you already know how to stay in bed for 24 consecutive hours, so how about we try something new?”  I’m not saying it was easy to maintain a regular sleep schedule; it took a hell of a lot of self-talk/self-lectures on a daily basis, and I certainly didn’t have a 100% success rate.  But I tried another new concept out this year by not shaming myself with negative self-talk when my day was less than perfect.

Not feeling guilty is actually more difficult for me than maintaining a good sleep schedule.

Healthy sleep habits definitely helped, but so did healthy exercise habits.  I said at the beginning of the winter that I wasn’t even going to go into the season with the intention of walking every day.  I hate the cold.  I hate the cold wind.  And I hate snow.  Going out for a slow walk was just not going to happen in upstate New York.  It was easier when I was able to run.  Then, just knowing the endorphin high was coming was enough to get me outside and exercising.

This year, I told myself I would try to maintain a regular yoga practice, along with my regular meditation practice.  My daily sitting practice went by unscathed.  However, there were many many many days when I just couldn’t make myself do yoga, or even do some simple stretches while watching television.  But–this winter I didn’t lecture myself about how bad it is not to exercise.  Turns out, guilt isn’t such a great motivator.

A couple of weeks ago, however, I found myself thinking, “It’s winter.  Just chill out and watch more Bones reruns.”  It was the end of winter and I didn’t feel like showing up at work, let alone exercising by myself at home.  And I’d just continue to sit there and read or knit.  And even without any self-lectures, I’d feel worse.  Mentally, emotionally, and physically.

Then I remembered another DBT skill: Acting Opposite.  I wanted to curl up in bed after going to work, not because I was enjoying a good nap that would be refreshing, but because I didn’t feel like dealing with the world.  Or my mind.  So I intentionally (a big mindfulness concept) decided to start (restart? revisit?  continue?) a daily yoga practice–with gentleness.  I started off with a few slow sun salutations–they only took a few minutes.  But I was okay with “just” doing a few minutes of yoga.  Each day, I added one more pose to my sequence.  I didn’t automatically just add on the next pose in the ashtanga series; I thought about what would feel good for my body and went with it.

So for part of the winter, I let myself sit and do nothing, exercise-wise.  For the rest of the season, I chose to challenge my depressive habits.  But in each case, I had to do so in a balanced fashion.  I had to listen to what was right for me in that given moment.  And I had to learn how to forgive myself.  These concepts of acceptance and forgiveness and gentleness are still new habits for me, and don’t come naturally.  But–I am discovering that, overall, I feel better when I choose to practice them.  My body and my mind thank me.

March 16, 2017 Posted by | bipolar disorder, Body Image, Communication, coping, depression, Eating Disorders, faith, feelings, guilt, health, heart, mindfulness, progress, recovery, shame, therapy, treatment | , , , , , , | Leave a comment

Annual Heart Walk

I normally don’t use this blog this way.  But this is a cause that is near and dear to my, well, my heart.  I was diagnosed with Arrhythmogenic Right Ventricular Dysplasia two years ago–a heart disease that has caused a sudden cardiac arrest, multiple episodes of V-Tach and I’ve lost count of the hospital and ER trips.  I now have a implantable defibrillator.  But there is no cure, no treatment.  It’s a progressive and degenerative heart condition, which basically means, the muscle cells in my heart are slowly dying.  I do this walk every year to help raise money for the American Heart Association, which helps fund research.  Maybe someday they’ll find a cure or at least a treatment for my illness.

My fund raising page

Please consider donating.  The minimum online donation is 25, but if you don’t have a credit/debit card or if you want to donate 5 dollars, message me through my Facebook Page and I will send you my snail mail address.  ANY amount is appreciated.  I only have one month left to reach my goal of $500.  I did it last year, so I know I can do it again.

July 12, 2011 Posted by | health, heart | , , , , , , , | 2 Comments

semper mutabilis

I was as I was doing errands today that “ever changing” would be a good title for this blog entry. And then I thought, “Well, if the marines can have a Latin motto, so can I.”

Semper mutabilis. Always changing.

My entry last weekend was writing about the Brand New Alexis, the one who had her priorities in order and was going to stick by them as she enters this new semester.  Except that the exhaustion that I expressed in my previous entry only got worse as my week went on.  I woke up on Wednesday with that ache deep in my bones that I just could not shake no matter what I did that day.  Needless to say, I did not walk on Wednesday.

I had made myself walk on Tuesday.  “It’s my one hour of the day that must be protected at all costs.”  My time to recharge and renew and process.  I didn’t really want to walk on Tuesday, but it’s good for me, so I did.  And then woke up on Wednesday in the aforementioned state.  I did not walk on Thursday.  I finally laced up my walking shoes yesterday afternoon before curling up with dinner, swiftly followed by sleep.  My walk yesterday was shorter than my normal walk, and I do plan on walking today and tomorrow since I don’t have classes.

My goal/idea of walking every day as a stress reliever–both physically and mentally–was initially an excellent idea, one that could have helped me have a successful semester.  But now, with two weeks of classes under my belt, I realize that it would not be part of a successful semester.  It would only be one more thing I “have” to do each day and one more thing that creates exhaustion.

And so the plan has changed.  I highly doubt Monday and Wednesday will be walking days.  I just have too much going on, and then too much due the following days.  Thursdays will be touch and go, decided on Thursdays as I take a careful inventory of how I feel, what I need, and how much energy I can safely expend.  Fridays and Saturdays and Sundays are all mine.

Until, of course, the middle and end of the semester hit me and I wake up with that bone-aching exhaustion multiple times a week.  Then, I will probably once more change my plans.

This is the beauty of recovery.  I can listen to my body and respond appropriately.  There are no “shoulds” or “have tos” or “if you don’t then you’ll be wracked with guilts”.  There’s respect for my limits and a deep-rooted knowledge that I can give my body exactly what it needs.  No guilt strings attached.

September 4, 2010 Posted by | coping, Eating Disorders, health, mindfulness, recovery | , , , , , , , , , , , , , | 1 Comment

One year ago today

Me. Lily. Bonded for Life.

One year ago today, my parents were driving me home from the hospital in St Louis where the day before I had an Implantable Cardioverter Defibrillator implanted beneath my left collarbone, with a lead going into the right ventricle of my heart.  On the two-hour trip home, I had to ask my dad to pull over twice so I could dry heave on the side of the highway (those IV antibiotics were a bitch), clutching both hands to my chest, terrified I was going to open the wound or jar the ICD out of place.  But we made it home in one piece, with Lily, my ICD, still in place.

I have mixed feelings about Lily.  I am thankful she’s there, for she (most of the time) quells my anxiety.  She won’t prevent a cardiac event, but she’s my protection in case a cardiac event occurs, ready and waiting 24/7 to jolt things–literally–back into a nice sinus rhythm (hopefully).  I don’t mind the scar.  It’s almost invisible now.  I find it annoying to show security officials my card and explain why I can’t walk through security gates and why they can’t pass that wand over my chest.  It’s been a pain in the past couple months since I can’t have an MRI, which the doctors would have preferred to have as an additional diagnostic tool in the case of my knee.  And sometimes, when I’m walking around, the realization that I have a chunk of metal in my chest and a wire threaded into my heart is just damn weird.  But most of the time, I’m thankful.  And at least a couple of times a day, I find myself tracing the outline of the defibrillator with the fingers of my right hand, and a feeling of reassurance swells up within me.

The past year has resulted in a lot of lifestyle changes, and I’ve been somewhat anal about following my doctor’s orders and avoiding every known trigger that could set off an arrhythmia.  In the beginning of the year, I was pretty positive and got on the “let’s spread the word about heart disease” kick.  It took until this past spring for the effects of all that my cardiac diagnosis entails to hit me emotionally.  And when they did, they hit me hard.  I’ve gone through phases of relief, anger, thankfulness, confusion, bitterness, rage, grief, and sadness.  Followed by more grief and sadness.  And I struggled with the feeling of being broken.  All of these feelings coexist within me still, and I suspect they always will, and that certain ones will surface depending on what situation I am in.  But thankfulness and relief at knowing what is wrong are the strongest two emotions.

People thought my cardiac symptoms were just a result of the eating disorder.  I’m not sure how many doctors told me if that if I weren’t anorexic, my heart would be fine.  I had four cardiologists tell me that.  They did an EKG and wrote my symptoms off as a result of my eating disorder, not bothering to check for any underlying diseases, even after I had a Sudden Cardiac Arrest and went into asystole for 53 seconds.  “She’s just an anorexic” was what I heard that night in the ER.  My gut told me that something else was wrong, but I couldn’t get anyone to believe me.

And then I recovered from my eating disorder.  I still had cardiac symptoms.  One cardiologist listened to me, did some minimal testing and threw a couple of pills my way and pronounced me healthy.  I moved to MO for my PhD program, got mono and strep and the cardiac symptoms flared up in frequency and severity and I became an expert at fainting and blacking out, learning the sensations right before I faint and learning to fall away from tables and chairs and doorframes.  One cardiologist told me, after asking extensive questions about my history of anorexia, that I “shouldn’t be fainting” when I felt the weird heartbeats.  Completely ignoring the fact that I was fainting while feeling those weird heartbeats.

So off to St Louis I went, and found an amazing cardiologist who hardly glanced at my anorexic history, content with my answer that I was recovered and had been recovered and healthy for some time, and took my complaints seriously and investigated the cause.  One look at my EKG and my history told him what it was, and an MRI confirmed it, and now I have a new acronym on my MedicAlert tag: ARVD (Arrhythmogenic Right Ventricular Dysplasia), a genetic form of progressive, irreversible and untreatable cardiomyopathy.  I also have two structural abnormalities that may be getting worse as the ARVD progresses.  My doctor was honest in telling me that a heart transplant may be in my future, and that even if I don’t have a heart transplant, I may need a valve replacement and/or a patch for the hole between my two atriums.

I wonder what would have happened if the first cardiologist, way back when, believed me, and didn’t write me off as “just another anorexic” or “just another psych patient”?  I have no doubt that my eating disorder behaviors aggravated the ARVD, but I would have developed it even without the anorexia.  The signs were there before I was anorexic, but at that time I was a healthy, all-star athlete.  What could possibly be wrong?  (Answer: A lot of things that often go undiagnosed until autopsy.)  What if, after my SCA, the ER doctors had sent me to the cardiac unit and ordered all the tests they would have if I had been a 60-year-old male?  What if they hadn’t sent me home the next day with a reprimand for being anorexic and a command to drink more water?

Obviously, I can’t answer those “what if” questions.  No one can.  Maybe they would have found the ARVD.  Maybe not.  It’s rather rare, and usually takes someone who specializes in it to actually find it.  I’ve given up on the anger and bitterness at not being listened to in my personal case.  I have a right to be angry, but holding onto that anger won’t get me anywhere.  But I am angry that I’m not an isolated case.  That medical professionals seem to have this disregard for psychiatric patients in general, and eating disorder patients specifically.  There’s this general idea that if you have an eating disorder, that is the root of everything else, and that all you need to do is stop restricting or stop purging or stop over-exercising and you’ll be fine.

A) That idea, that all you have to do is get better and you’ll be fine, is so dangerous.  For one thing, it shames the patient a patient who already has a great deal of shame.  For another thing, not everything is caused by the eating disorder, and serious and life-threatening illnesses may be overlooked all because “she’s just another anorexic”.

B) So what if the problem is caused by the eating disorder?  People with eating disorders are known to have heart problems, a lot of which will go away once the individual is healthy.  But in the meantime, is it wise to ignore the problem and just wait for the patient to recover from the eating disorder?  Shouldn’t we treat the problem as much as we can, now, while the patient is alive?  Or is it better to mourn the individual’s death and say, “If only she hadn’t been sick, her heart would have been fine”?

I’m not saying that we shouldn’t encourage the individual to recover from his or her eating disorder.  Of course we should.  But we should also do everything to help him or her with dignity and respect.  Shame and derision have no place in the treatment of human beings, but that seems to be the status quo of too many medial professionals.

If you know, deep down, that something is wrong, and someone tells you that it’s all in your head or it’s just because of your eating disorder, don’t listen to them.  Listen to your body.  Seek another opinion.  Keep knocking on doors until someone believes you and is willing to listen.  Your life is worth it.

July 16, 2010 Posted by | Communication, death, Eating Disorders, health, heart | , , , , , , , , , , , , | 6 Comments

what is “healthy” anyway?

question by queeen666 at deviantart.com

This entry was thought up as I answered a comment to my previous post.  The question:

Maybe this is a similar question, but how/when were you able to not feel bad for being “healthy”? My problem is once I hit that no longer “underweight’ category in my BMI I freak and then retreat back just to stay “underweight”….I am scared of being “healthy”. When did that fear dissipate for you if you ever had it?

My answer:

“Oh, I definitely had that fear and would do the same as you and get back to the BMI that put me just in the “underweight” category. I didn’t care if it was by 1/10th of a point, but I wasn’t “healthy”. I’ve been thinking a lot about where our fear of healthy comes from, for it is common. I think for me it meant I was no longer worthy of help or care, if I was declared “healthy.” And i think I wanted to be taken care of, or be seen as worthy of care. And my weight was the only thing I thought I could control at the time. It changed for me when I was in the hospital. when someone asked me what i did (job wise/etc.) and I answered “I’m a grad student” and then realized I WASN”T a grad student. I was on a medical leave with my ass in the hospital for the upteenth time. And about that same time I realized I really wanted to be an active part of my nephew’s life because it broke my heart to have him visit me in the hospital. And I decided I had to be healthy to really be A) part of his life and B) a functioning grad student. Those two things were what I kept in mind, to combat the “healthy=bad” thoughts. And then I realized I just felt so much more alive and was enjoying living. And I was “healthy.” And I couldn’t do that when I was “underweight.” And the knowledge that my “healthy” is above the BMI charts for my height. I don’t function well at what the charts say is healthy for my height. I NEED to weigh more than that. That acceptance took longer, but it really sunk in fast when I finally did accept it.”

This sparked a thought train in me–a thought that I keep coming back to. Why do so many anorexics fear the word “healthy”?  I know that I spent weeks leading up to hitting my goal weight obsessively dreading it, worrying about it, getting anxious about it–and I still had XX pounds to go. But the knowledge that I would then be “healthy” was something I couldn’t bear.

THEN: the term denoted someone who was “fine.” Someone who didn’t have an eating disorder and, therefore, didn’t need treatment or concern.  Even when i was in need of treatment and refused, I still took convoluted pride in the fact that I did, indeed, need it.  It meant something–that I was “succeeding” in my eating disorder.  “Health” also meant “fat” to me.  I couldn’t imagine weighing “that much” and I imagined I must turn into an elephant if I weighed “that much.”  “Health” also meant the loss of my bones–or the easy visibility of their outlines.  “Health” meant I would be bigger, and, therefore, more visible, and I was so afraid of that.

In the slightly less illogical thoughts on term: I used to think that once I hit my goal weight, I’d be healthy and no longer sick and my body would be recovered.

NOW: I have come to value health.  And my view on health has expanded, including more things than weight alone.  I think each person has a different range in which health occurs.  For example, my doctors knew that my ideal weight was actually 5-7 pounds OVER what the BMI said was healthy for my height.  And I have friends who weigh more than I do and are healthy, and I have friends who weigh less than me and are healthy.  I DO believe that you can’t be underweight or obese and have true health.  Both extremes bring health problems; both extremes can result in death.  (And sometimes, a lot of the time, the healthy weight-but-engaging-in-behaviors results in death, too.)

Weight is not the sole determining factor.  Suppose I maintained my weight by eating nothing buy ice cream.  I’d be in a healthy weight range, so I must be healthy?  Except I’m missing all the protein and the fruits and vegetables and carbs that are so essential to health.  I could maintain my weight by drinking beer all day, and I think we can all agree, that’s not healthy.

I’ve learned what a healthy lifestyle is, and again, this is different for each individual.  But yes, it does mean eating the right amount of food so that your body can function efficiently, and  yes, an appropriate amount of exercise for your condition.  I means getting sleep.  It means engaging in fun activities. I means fostering healthy and positive relationships.  It means working on your relationship to whatever you may call your higher power.  It means balance.  Work, school, social functions, exercise, hobbies–all done in a healthy balance.

So little of health is determined by weight alone.  I mean, my weight was “okay-ish” when I was engaging in obsessive exercising and that resulted in a very unhealthy physical (and mental, for that matter) me.  And once we hit our goal weight, we still have so much work to do before declaring ourselves “healthy.”  Behaviors, addictions, symptoms, etc.  All come into play.

And I still do remind myself of what health is.  And that my body’s needs change as my situation changes.  Right now, my caloric intake is lower than a few weeks ago.  But I hardly move out of my living room because of my knee.  And when I am walking again, and going for walks in the evening, my body will require more calories.  And I’m fighting a chronic illness, and I’ve learned that I need energy for that.  And I need to bear a little more weight than I did in the past.  And I remind myself of all the things I can do in this “healthy” range that I never could in that “underweight” range–my physical energy and strength are vastly improved as are my cognitive abilities.  I am partaking in life in a way I never could have while I was underweight.

But I am curious as to what the word “healthy” implies to people.  if you are afraid of it, why?  I’d really love for comments on this entry (on the blog itself, not on facebook) so that people can (hopefully) see that they are not alone in their fears.

So bring on your definitions!

July 14, 2010 Posted by | Body Image, Eating Disorders, feelings, health | , , , , , , , , , , | 9 Comments

“Your natural, awesome power”

ThInK

I’m not much of a Delia’s fan.  It’s not that I don’t like it for any real reason, but I just don’t wear a lot of what they sell.  But they have some awesome shirts.  And this was purchased around the time of my cardiac diagnosis and surgery so I “had” to buy it.  Th for Thorium. In for Indium.  K for Potassium (the only one I had ever heard of before).  K, of course, being very crucial for the health of my heart.  I have a standing prescription for Potassium for the days I can feel my heart beating a little funky and for when the labwork shows that it’s a tad low.  Along with iron, my potassium level has this odd tendency to just drop.  For no reason.  And in both instances, I can tell within a day.

All of this leading up to a quote from a friend’s blog about motherhood and pregnancy and all things related:

Above all else, if you are expecting or trying to conceive, get to know your body.  Listen to it.  Nourish it.  Marvel at its complexity.  Revel in your cycles, your fluids, your twinges and feelings.  Rediscover your own awesome, natural power.  So that when the moment comes you know your body as well as an old friend who’s sentences you finish, and you know the right decision, because truly you are the person most qualified then to make it. (From Jenn’s entry, “A Call to Labor” at the blog “Connected Mom”  I highly recommend her blog to anyone who is thinking of being pregnant, pregnant, or is a mother. And if you go to this specific entry, you’ll see a picture of me in another one of my heart t-shirts.)

This closing paragraph to her entry contains some powerful powerful words.  We exist in a society that doesn’t want us to listen to our bodies.  We’re supposed to do whatever it takes to lose weight, get rid of that stomach bulge, go on weird diets that exclude entire food groups or individual foods even though doctors have repeatedly stated the dangers of this, and generally make our bodies conform to this one ideal of a beautiful body.  Regardless of what we feel.  Hungry and it’s in between meals?  Ignore the hunger and wait until it’s “time” to eat.  You’re not “supposed to” eat in between meals.  Or after dinner. Or at 2 am if you wake up from hunger.  Feel excessively tired?  Go to the gym anyway and pound that treadmill like there’s no tomorrow.  Forget about a gentle yoga class that focuses on breathing and relaxation. That won’t help your body fit into this cookie cutter approved shape.

I’m sure you all know that I don’t agree with any of that.  I don’t agree with the media’s pressure to fit into one desirable shape.  And we can’t just say this is a female problem only anymore.  Look at men’s fashion magazines and fitness magazines.  Do you see anymore variety in the body types there than in the women’s magazines?  Hunger signals exist for a reason.  They mean you’re hungry and need food. (I am aware that there are medical conditions that screw with your hunger signals and you actually do have to eat on a schedule with a given meal plan.)  And there’s a reason you wake up exhausted some days and don’t feel like going for a four-mile run.  Your body needs rest.  (And again, I am aware that there are medical conditions that make you more tired than normal and exercise can help you feel better.)

In the course of the eating disorder, most of us learned to ignore all of our bodily signals.  Sometimes to the point where we stopped feeling them all together.  I remember the first time I felt hunger after following my meal plan for awhile.  It scared the shit out of me.  I didn’t know what to do.  My nutritionist’s answer: “Eat.  Grab a small snack.  And then chances are you won’t want to eat as much at your next meal.  Your body will tell you what it needs.”  I have to admit that I didn’t grab a snack that day.  The idea of eating between meals was still too scary.  But eventually, I did learn to rely on hunger cues for meals and snacks.  And by golly, my nutritionist was right.  My body will tell me what it needs.  Amazing.

And fatigue?  Screw that.  Wake up and put on those running shoes and go pound the pavement even though you haven’t eaten in days.  (please note my sarcasm.)  When I began recovery, I took one full year off of all exercise.  I, personally, needed to do that to break the addiction.  And when I began exercising again, I followed a plan I discussed with my nutritionist beforehand.  And I followed it to the letter.  Regardless of how I felt.  If I was tired and I was supposed to run three miles, I ran three miles.  If I was full of energy and was supposed to take a day off, I took a day off.  Again, it took time to trust myself enough to listen to what my body needed.

But I think there’s also a bigger problem in society, one that exists regardless of your history with eating disorders: the idea that the doctor knows best.  Follow his or her advice and you will be healed.  Do not question your medical practicioner, because he or she has the degree, you don’t.  He or she holds the knowledge; you don’t.

This is only true to a certain point.  Yes, they have been to medical school and have a significant amount of knowledge that can help you.  But they do not know everything.  They do not know what you are feeling in your own body.  They do not know your feelings about antibiotic treatment, immunizations, and the wide range of medicines available to treat every little and big malady.  And sometimes you know, you just have this gut feeling, that something isn’t right, even though the doctor looks at you and proclaims you well and fine.  But you, you know your body and you’ve lived in it for X number of years and you know what feels normal and what doesn’t.  And you have the right, when that doctor is about ready to close your chart and leave the office to say, “Hold on a second, if you don’t mind.  I have some questions.”

Five cardiologists told me I was fine.  They couldn’t see anything wrong with my heart.  One cardiologist told me, “You shouldn’t be fainting when you feel these palpitations.”   That’s sort of the problem, I thought, I AM fainting when I feel these palpitations. But he didn’t want to see me for another year.  I went back to my GP, completely frustrated, and he sent me to a different cardiologist.  I had to drive two hours to get there, but he listened to my history and my description of what I was feeling, looked at my EKG and said, “I am 99% sure I know what’s wrong, but I have to do an MRI to confirm it.”  He was the first doctor to even suggest doing an MRI.  And sure enough, his 99% of an educated hunch turned out to be 100% accurate.

What if I had ignored the fact that I knew something was wrong with my heart?  What if I had listened to that doctor who told me I “shouldn’t” be fainting?  There is a good chance I would have had another Sudden Cardiac Arrest, and there’s a good chance I wouldn’t have been as lucky as the first one, when it happened in the Emergency Room.  I could have been running.  I could have been in the middle of the grocery store.  I could have been any number of places where there were no AEDs readily available, and when your heart stops beating and  you stop breathing, you don’t have much wiggle room as far as time.

. . . get to know your body.  Listen to it.  Nourish it.  Marvel at its complexity.  Revel in your cycles, your fluids, your twinges and feelings.  Rediscover your own awesome, natural power.  So that when the moment comes you know your body as well as an old friend who’s sentences you finish, and you know the right decision, because truly you are the person most qualified then to make it.

This is scary for a lot of us with a history of eating disorders.  We spent years trying not to feel anything, denying our bodies in any way possible, treating our bodies as enemies.  Part of recovery is allowing yourself to learn the beautiful curves of your body, the way that bump on your wrist aches in the cold, the way the hair on your arms sort of stands up when you get cold, the way your feet cramp after a day of driving, the way you shoulders tense while having a difficult conversation.  Learn every single nook and cranny of your body and name it as your own.

Rediscover your natural, awesome power.  It’s there, inside each and every one of us, waiting for us to claim it.

July 3, 2010 Posted by | Eating Disorders, health, heart | , , , , , , , , , , | 8 Comments

Justifiable Illness

 

http://illeg4le.deviantart.com/art/disease-53011579

Disease

 

So every so often I get off my ranting high horse  and ignore the issues at hand and just give you a plain old update of how I’m doing in this thing called life.

This post may be a combination of all three, although the ranting will be considerably tamed down.

For the past few months, I’ve noticed a lot of changed with my body.  Not feeling well in general.  I’ve gotten sick more often than normal.  Some general symptoms I won’t go into here because of TMI.  And, of course, the unexplained weight gain, which I have talked about in other entries.

We chalked it up to stress.  We chalked it up to post-surgery healing.  We chalked it up to side effects of my medications.

But if I learned one thing during this heart journey over the past several months it’s that if you know something is wrong with your body, if you can feel in every cell, don’t settle for maybes or ifs or perhaps.  Settle for answers.

This previous week I saw my regular internist and was, as usual, frustrated that regardless of me doing everything right to get back to my goal weight, it has plateaued at this higher-than-normal-for-my-height spot.  Significantly so.

In March and August I had elevated TSH levels–just under the limit for hypothryoidism.  Then the next test would come back normal.  Well, my last TSH was above the limit.  Enough to make it clear that my “thyroid gland has been slowly petering out” (words of my doctor).

It was a relief.  On many levels.  I could finally say it wasn’t my fault.  I could say I was right, that all of these strange symptoms were related and not just stress or due to surgery.  I could take a pill and hopefully see and feel improvement.

What makes me angry is that the TSH level was ordered while I was in the hospital in October.  A month ago.  Meaning the doctors there ignored it.  Which falls into this pattern of “You’re just a head case so we aren’t going to listen to your symptoms” that I’ve gotten from almost all doctors.  Cardiologists (it’s just the eating disorder.  stay hydrated.).  Psychiatrists (“Well, you don’t have a UTI according to this lab result” — at the hospital in October after me complaining of a bunch of symptoms.  None of which got any further attention.)

How much of my own mental well being would have been buoyed by me knowing what was going on in my body, by me not thinking it’s all in my head?  Why do doctors think that just because we have a diagnosis of mental illness on our charts we don’t know when something is wrong with our physical bodies, that we aren’t histrionic or a hypochondriac?  A doctor’s job should be to make sure that his or her patient is in sound condition.  But if we aren’t even listened to, how will that happen?

My advice, if you don’t get an answer, go to another person.  You are the consumer.  You have the right to be heard, and when it comes to your health, you need to be heard.

 

November 21, 2009 Posted by | Communication, Eating Disorders, health, heart | , , , , , , , , , , , , , , | 5 Comments