Monday, January 31, 2011

What To Expect When You’re Unsuspecting (Or The Things Your Doctor Doesn’t Tell You)

I started physical therapy for my gut last week. I was hoping to write a post about it once it was over, but that is at least six weeks away, and I really needed to vent about the experience.

I really didn’t know what to expect going in, but I assumed that you just lay on a table and someone palpated your stomach in such a way that it would get things moving. Not so. Are you ready for this? Brace yourselves…

Someone takes their finger and sticks it up your butt. And they manipulate the muscles that way…

(Read until the end. I promise, it gets better.)

I had no idea. And this is partly my fault. I did not ask my GI doc what physical therapy would entail. Mainly because I didn’t want to know the answer, because if I had known the answer, I probably would have refused. And because, at the time, anything, well, almost anything, sounded better than having to have surgery.

But shouldn’t someone have warned me? Shouldn’t I have had the opportunity to escape before I was knee deep in the situation? Given the tests that my GI doc has sent me for, I guess I shouldn’t be all that surprised, because they go from unpleasant to unpleasant-er. But don’t good doctors tell their patients what to expect from therapies and treatments? I’ve said it many times before: my GI doc is an uber-specialist, but the more time I spend under her care, the more I think it’s time to jump ship and find someone else.

Don’t get me wrong, the physical therapist was kind and gentle. But when someone’s got their finger up your ass – I’m sorry, but I don’t know a nicer way of saying it – at some point you just have to dissociate, like your body is there, but your mind is not. That’s the only way to get through it.

Modern medicine continues to disgust me with some of the antiquated methods it seems so hell bent on using. Really? In the 21st century, we really have no better way of dealing with a barely active colon other than to stick something up there, especially since I thought the goal was to get stuff out?

Some of you may be shocked by my openness here. But the truth is, there is no privacy anymore. No matter how depersonalized I felt things were in the past, this experience beats them all. I’m sharing with you all because I feel like I have a relationship and rapport with my readers. And because I’ve opened myself up in far more intimate ways to a total stranger.

I feel violated. Like a piece of meat that has to lay there and take it. I am just a specimen. My feelings and emotions don’t matter. I should remain mute. My boundaries have been crossed, and now there’s no way to go back.

As patients, are we allowed to have boundaries? Or being chronically ill, is it simply a fact of life that our boundaries will be tested?

When I went to my first rheumatologist appointment, and he had me get 27 tubes of blood drawn, that certainly tested my boundary of breaking out into a cold sweat for just one tube. In that moment, I had to grow up, and I had to accept the situation because I really had no choice. Had I resisted, I would have probably been considered non-compliant, and refusing something that was directly related to being diagnosed, would have seemed contradictory.

So should I just expect that from now until forever my boundaries will be tested and my threshold for what I am able and willing to handle will continually go up?

Have you ever found yourself in a compromising situation that you can’t get out of because your doctor put you there?

I so did NOT sign up for this!

And don’t worry, the irony of the fact that my physical therapist’s last name is BUTTS, isn’t lost on me. Only in my life would something like that happen. And I have to say, there needed to be some humor in this situation.

And a friendly warning: Don’t get caught unawares, because someone might just come and stick their finger up your ass. Yes, apparently there are people who spent years being educated on how to do this. And they enjoy it! Well, maybe they don’t enjoy it, but they don’t dislike it, either. There are no ifs, ands, or butts about it.

Okay, I’m going to stop now…

Wednesday, January 26, 2011

It Just...Kind Of...Happened...

“I finally found someone
That knocks me off my feet
I finally found the one
That makes me feel complete
It started over coffee
We started out as friends
It’s funny how from simple things
The best things begin”

- “I Finally Found Someone” by Bryan Adams and Barbara Streisand

My BF and I have been dating for a year today. So I guess this makes it our “one-year-dating-anniversary.”

I think that my previous relationships didn’t work because the other person was so set in their ways that they didn’t have room in their life for me. And that’s okay. I’m better for it. Because without those experiences, I wouldn’t have been willing to throw caution to the wind and go out with someone who I wouldn’t have normally gone out with.

What does that mean? A red-headed, Jewish doctor (as if that is the worst thing to be, right?). All of the qualities I didn’t want in a man. This is funny in and of itself, but it is all the more funny because my Bubbie – that’s a Jewish grandmother – didn’t want to marry a man name Manuel who was in the grocery business.

And guess what? She married a man named Manuel, who owned a grocery store, and they’ve been married for 64 years (I definitely like those odds!)! And I’m so glad that I went out on a limb, because I would have made a huge mistake if I hadn’t.

When I first started dating, I didn’t feel like I had the right to be too choosy because I am sick. I thought I had to take what I could get because, who, after all, wants a sick girl? This line of reasoning is incredibly negative and did not serve me well at all. I made a lot of mistakes along the way. But these mistakes made me realize that I deserved so much better than what I was getting.

Insert BF here…

I can’t really believe a year has gone by so fast. But to be honest, it has been one of the best years of my life. I never expected that going for coffee on a day that I wasn’t feeling well, and got out of my pajamas at 7:00 p.m. to go on the date, would turn into something that has lasted a year (and will hopefully last a lifetime).

I feel so lucky to have found someone who truly loves me for me, who has embraced my shortcomings, has celebrated the positive things with me, and has supported and encouraged me through the negative.

The reason I titled this post “It Just…Kind Of…Happened…” is because I can’t quite believe this is happening to me. I can’t believe that this amazing man is a part of my life. We survived the disclosure of illness, we survived past the third date, we survived meeting the parents, we survived a hospitalization, we survived losing a grandparent.

The point is, we’ve survived a lot of heavy stuff in a fairly short period of time, and we are still together, and I think, loving nearly every minute that we get to spend together.

He’s my B-F (boyfriend), my S-O (significant other), my P-I-C (partner in crime), and really, more than anything, he’s my everything.

Rich, I truly hope you know how much I love you and how lucky I am to have you in my life. Thank you for making every kiss feel like it’s the first. Thank you for making love song lyrics that I used to fantasize about become my reality. And thank you for never making me feel like a “sick girl,” even when I was in the hospital. You might be a red-headed, Jewish doctor, but you’re my red-headed, Jewish doctor. And I love, love, love, love you!

Forgive me for being so schmaltzy. But healthy or sick, there are some things you just have to celebrate.

Sunday, January 23, 2011

Needles(s) To Say: My First Vlog

video

Hey everyone, this is my first vlog.  I really hope you like it.  Forgive the lack of makeup, and the fact that I apparently really like to roll my eyes. Please feel free to leave comments about whether you like me vlogging, and if so, what topics you would like me to talk about in the future.

Friday, January 21, 2011

Dear World, I know I’m Too Young For This, So Stop Telling Me So!

You know, rather than punch people in the face, as one of my previous posts suggested I want to do, I’ve decided to come up with a battle cry, and I think the title of this post is just about perfect.

It’s so annoying when I talk to people and they tell me I’m too young to be sick. I have lupus and rheumatoid arthritis, among other things. I’m 25 years old. Clearly I’m NOT too young for this.

Even a recent article in the Huffington Post backs up the fact that I am not too young for this. The article’s title says it all: “Preexisting Conditions Afflict Up To Half of Americans Under 65.”

Do people not think I am aware of my situation? I’m 25, but sometimes I feel (and possibly even behave) like I am 80 years old. I am aware that this is not the “normal” course of events that life should take. But it is my life.

I think people think they are being nice when they say this. I think in their heads it sounds like I’m so sorry this is happening to you. It shouldn’t be happening to you. You don’t deserve this. But to me, it sounds like I did something wrong. If I’m too young, but it’s still happening to me, then clearly I am the problem.

I don’t think these comments are made with malicious intent, but they are not made with much thought, either. Rather than saying nothing, people try to fill up empty space with comments that are equally empty. In this case, If you can’t say something nice, don’t say anything at all, doesn’t really work. But what about If you can’t think of anything intelligent to say, don’t say anything at all? Leave the empty space empty. Don’t say something just to fill air. Because these types of comments are worthless and sometimes even border on hurtful and offensive.

Better to let illness remain the elephant in the room than to try to come up with a comment that shows you clearly don’t understand the situation.

This statement is supposed to be some kind of consolation, but it’s not. In fact, it’s exactly the opposite. It doesn’t make me feel better about things; it makes me feel worse about them.

When people tell me I’m too young for this, I feel like saying: Wow, thanks for stating the obvious. And if this is true, THEN WHY THE HELL IS THIS HAPPENING TO ME?

This goes along with other unsolicited advice and opinions that healthy people give, and are so adept at giving. Or they ask questions like, “Are you really sure you actually have lupus?” As opposed to what, ass wipe, chronic constipation and pelvic dyssenergia? Oh wait, I have that, too! You lose. I’m just too awesome for words.

But seriously, my GI doc told me that I’m too young to be having the problems with my gut that I am. Well that’s just great. Even doctors fall into this trap. Sometimes they say the most unhelpful things.

So much of a chronically ill person’s time is spent dealing with healthy people and the stupid shit that they say and do. I think many of us try to educate those around us about how best to treat a sick person. This usually means treating us like we are people, and not acting weird or saying inappropriate things. This isn’t rocket science, people, it’s common sense.

Yes, I’m too young for this. So what are you going to do about it?

No more Miss Nice Girl.

Tuesday, January 18, 2011

Diagnosis Isn't Everything

The Mayo Clinic recently released the results of a study, suggesting that women have a 3.6% lifetime risk of developing rheumatoid arthritis and a 0.9% risk of developing lupus (http://www.eurekalert.org/pub_releases/2011-01/mc-mcd010511.php).

This reminds me while I’m not alone in this fight, I am unique.

The lifetime risk for breast cancer for women is 12.2% or about 1 in 8, although this risk is very small for my current age bracket (http://www.cancer.gov/cancertopics/factsheet/Detection/probability-breast-cancer).

In other words, we are being told virtually nothing about these other illnesses, and billions of dollars a year go to causes that most women think about, at least to some extent. So really, we are harboring silent killers. I thought arthritis was only a disease of old people, and I don’t recall ever really hearing of lupus until I was diagnosed with it. This really frustrates me. And this should not be the way things are. This, after all, is America.

On the other hand, with a lifetime risk of just 0.9%, shouldn’t I feel an obligation to question the diagnosis?

Recently, someone (not a medical professional) asked me:

Is it really lupus?

And I was forced to wonder:

Am I still supposed to be asking this question?

Because with this question comes others that I think are equally unproductive.

Did I cause this?

Maybe I did. Maybe my flu shot caused it. Or loving Splenda. Or drinking diet soda on occasion. Or eating fat free everything in undergrad because I was worried about the “freshman fifteen.”

If we all lived life like this, examining our every move under a microscope, we would all be miserable, fairly unproductive people.

I keep telling myself that I want to stop dwelling on the past and asking unproductive questions.

What if I had done this differently? What if I hadn’t dated this or that guy? What if I had indulged more or drank less soda?

The problem is that illnesses are complicated, and no one thing could have caused, or prevented, my illnesses. Just as there are a constellation of symptoms, there are a constellation of causes. To think that I can ever really figure out this puzzle is ludicrous. It’s nonsensical. So why bother trying?

Because healthy people say and do things that lead me to believe that I should have all the answers.

I’m sick of the self-blame. Of the feeling of inadequacy I feel for not being like my healthy counterparts. I still struggle with trying to balance other people’s opinions with the fact that grad school is not my top priority. Being as healthy as possible is. But healthy twenty- and thirty-something’s don’t get that.

I’ve been thinking back to what it took for me to get to where I am today. I am also working on a paper that I hope to submit for publication that looks at my illness experience over and against, and in relief of, the broader medical sociology literature. This has led me into an extended foray into my medical records, and has reminded me of how muddled the diagnostic process was.

Celiac’s disease. Systemic yeast infection.

Those are just a few of the illnesses that were in the running when I was in the process of trying to obtain an accurate diagnosis. And there were many, many more.

I can only imagine that those who have contested illnesses, or those that have illnesses that cannot be identified via medical testing, feel differently about diagnosis. I know that in many ways I am lucky that there is a label to put on me.

But diagnosis isn’t everything.

I was convinced that my life would be better as long as I had a diagnosis. But it turns out that, that isn’t always the case. I have lupus and rheumatoid arthritis, but I also have a constellation of other symptoms that don’t necessarily fit my diagnosis perfectly. I have illnesses that are hard enough to explain to myself, let alone other people.

A diagnosis provides some comfort sometimes, but it doesn’t do much for the reality that I am chronically ill with two incurable diseases and all that comes with them. A diagnosis provides an outline of medications, although some may work, and some may not.

I thought that a diagnosis would solve my problems, but it doesn’t. Sometimes I wish I didn’t know. Sometimes ignorance is bliss.

Monday, January 10, 2011

Tie Me In Knots; I Won't Come Undone

“Our lives begin to end the day we become silent about things that matter”

- Martin Luther King, Jr.

I have the right not to remain silent. Hence, this post will emit all of the things and feelings I have been dealing with over the past few months.

Thanksgiving was terrible. Christmas was non-existent, and I already feel like the first days of 2011 have flown by without me noticing.

I’ve felt a bit guilty about not sharing recent events with my readers, but I didn’t want to seem like a complainer. And I didn’t know how to talk about it all in a coherent way. So this post may only be semi-coherent.

The last few months have been filled with more calls from doctors, doctor’s appointments, and tests than I care to remember.

I had more disagreements over appointments with the GI people, I had to contact patient relations again, and I was finally told by someone in GI that I wasn’t being treated properly and that the way I was being treated goes against protocol.

In between the other chaos, I got separate calls from my rheum’s and GI’s office telling me that separate labs had come back abnormal. I was taken off Methotrexate. I am back on it now, on a lower dose. That which does not kill you, right?

I also had a defecography and colonic transit test. While it’s amazing how comfortable you can become talking about the inner and outer workings of your gut, I’ll let you discover exactly what these tests entail on your own, if you so desire. I will say, however, that the colonic transit test is a weeklong commitment. And what a commitment it was.

I don’t know how people that have mainly GI symptoms associated with their illness(es) do it. It is exhausting, embarrassing, and disabling, not knowing how your body is going to react, and not being able to trust that it will work properly.

On the one hand, my life has been overwrought with health stuff. On the other hand, I have found myself on the other side of things.

I won’t say too much about the non-health stuff because it is not really mine to tell. But it has been like watching a speeding train derail, and not having any way to stop it. Now I know what it feels like to be in the position of those around me who have had to deal with my illnesses and have no way to really help me.

I’ve also learned that you never really know what is going on in someone else’s life or home unless they tell you about it. You can think that these are the happiest people in the world, and their lives could be falling down around them.

How much can one person take?

I wish there wasn't a before and after. I wish there was just life, and a life that wasn't always spiting and thumbing its nose at me

I have a feeling that this might be one of those posts that I look back to and shake my head at, wondering how I really could have been feeling this low. But right now, I am, and the only way I can really think to help myself is to write the hell out of it.

Honestly, I’m pretty convinced that these people don’t know their head from their butt, and given that they are GI people, that definitely isn’t a good thing.

And does it make sense to anybody that my two and a half day hospitalization was billed to my insurance as outpatient care, which meant that I had to pay for part of it?

I am also sick of living in a country where people who are down on there luck get no compassion whatsoever.

I didn’t really make resolutions this year. Mainly because what I would really like to do is go into bed, put the covers over my head, and not get out until all of this crap is over.

I am exhausted…already…physically and emotionally.

I ran into my GI doc at the hospital, on the way to my volunteer post, and she had no clue who I was. There was zero recognition. I have seen this woman many, many times. My rheum has recognized me “on the street”. This really frustrates me. I want to trust this doctor and what she has to say, but how can I? Her inability to recognize me makes feel worthless and invisible. It makes me realize that in the medical system, I am just a patient, a number. My personhood is in question. Because I am sick.

I’m sick of being the person that gets treated like crap, but takes it with a nod and a smile. That acts like it doesn’t bother me. Because it does. And now I want to rip everyone’s heads off at any chance I get. But I don’t. And I won’t.

I’m trying to get things under control. In the near future, I’ll be starting physical therapy for my colon. Not sure what this will entail, but needing it to work so that I can avoid surgery. My doc thinks that this is not related to my rheumatologic issues. How can it not be? I’m still searching for more concrete answers, and hoping they come my way very soon.

And I’m doing what I can to support those around me who are dealing with difficult things.

So that’s where I stand. And that’s the key thing. Despite being totally overwhelmed by things, I am still standing. I may be a bit worse for the wear, but I’m doing the best I can.