Wednesday, August 24, 2011

Las Vegas Is Not For The Faint Of Heart Or Chronically Ill

I recently spent four days in Las Vegas.  I was there for an academic conference.  But since I had never been to Vegas before, I tried to have a bit of fun, as well.

There were two ways to treat this Vegas trip.  The first was like many of the blowhards who were attending the conference – to totally and completely hate Vegas without really experiencing it.  Or to go full tilt and experience Vegas, and love it or hate, but coming to that conclusion in an “educated” manner.

(I’ll admit that it was slightly ironic to be presenting about being chronically ill against the backdrop of a place that is so much the antithesis of that)

And then there’s the reality of my chronically ill life.

While I had fun, I paid a price.

There was a bit of drinking (not much by Vegas standards because my tolerance is low because I drink so rarely now; see picture at the end of this post) and gambling, a bit of hot pink feathered hair extension debauchery (good for the next three to six months; see picture at the beginning of this post (and I’ll admit, I’m totally digging it)), and overall, a bit of wearing scandalous clothes and impossibly high heels.  Throw in a Cirque show and some shopping, and you pretty much have a quintessential Vegas experience.  Tame by many standards.  Apparently, not tame enough for me, so my body now tells me.

But we’ve all got to let loose every once in a while, right? 

I learned an important lesson.  Vegas is not for me, and I suspect, not for many chronically ill people.

Vegas is just too much of everything. 

First off, everywhere you turn is another opportunity to be totally overstimulated.  It’s exhausting trying to keep up with the sights and the sounds and everything else. 

The heat was horrible.  The temperature averaged 105 degrees for each of the days I was there.  You would walk a block and be soaking with sweat, not to mention completely parched.  Although, for me, one unintended consequence is that the heat may have saved my joints from an even more untimely demise. 

Going outside to the heat and inside to the full blown air conditioning, and going to bed late made me feel completely run down and exhausted.  Not only was I eating at crazy times, but more healthful choices aren’t easy to come by in Sin City.  The portions were ginormous.  Honestly, I couldn’t wait to come home, and get back to real life.  I need consistency to stay as well as possible, and if Las Vegas is anything, it is definitely not consistent. 

I had overextended my hip a bit in kickboxing earlier last week, and as my time in Vegas progressed, it only got worse.  Las Vegas is a place where you can’t really avoid walking around.  And like everything else, the walking is just too much. 

I finally caved and took a Prednisone because the pain was wearing on me.  I was getting short with people, and I realized that it wasn’t something they could understand.  Unless you’ve experienced pain where you can literally feel bone grinding against bone, you can’t begin to imagine the wherewithal it takes to power through it. 

While the Prednisone greatly improved my hip pain, two days later, and I am already seeing the effects on my face.  The cystic acne is back.  And as much as it’s unsightly, it’s so painful.  This is just one reminder of why I hadn’t taken Prednisone in months before I took it the other day. 

I got some pretty severe blisters on the top of my feet from my shoes rubbing the wrong way walking through the airport.  I hoped maybe the Prednisone would aid in healing, but the blisters are open and raw.  It kind of looks like a dinosaur took a bite out of my foot.  And you know, maybe one did.  I’ll never tell.  What happens in Vegas, stays in Vegas.  Or so “they” say…

I guess it’s fitting that my return to Prednisone, even it was only a momentary lapse (I hope), happened in Vegas, because Vegas is life on steroids.

While “healthy” behavior is not espoused in Vegas, it’s clear to me that the smoke and heat and walking involved and the late nights are meant for a crowd who are “healthy” by “normal people” standards. 

The thing is, this whole experience brings up the fact that I’m 26 years.  Wanting to explore Vegas like other people my age isn’t so pie-in-the-sky.  But the reality is, by virtue of my illnesses, I have limitations.  And I definitely overdid things.  But it was hard not to.

For me, it was just too much.  I felt overwhelmed.  And now I feel pretty jetlagged and awful, and am trying to recover.  I also made the severe mistake of taking the red eye home.  It probably would have been fine if I wasn’t already exhausted, and then was put through the ringer by security.  I left Vegas at 11:15 p.m. Vegas time, 2:15 a.m. my time, and arrived in Detroit at 6:05 a.m.  The plane was cold, so I was pretty stiff and in pain by the end of the flight.    

I’m glad that my summer traveling is finally coming to an end.  I’m exhausted. 

So viva, LV NV!

Or maybe it’s more of ADIOS, LV NV.  I’ve had my fill, won’t be missing you, and probably won’t be coming back any time soon.  However, I will say that I could never really have fully understood what Las Vegas was actually like without experiencing it firsthand.  So I’m glad for that, and now it’s back to reality.

Friday, August 19, 2011

On What Ifs And Never Agains

My birthday was last week.  It came and went.  I’m 26.  Big deal.  I’m feeling pretty down about it.

Last year at this time…

Last year at this time I was planning for a future that no longer exists.  

As much as the dreams of getting married and having children are at the forefront of my mind, I refuse to indulge these thoughts.  I won’t buy wedding magazines until I’m engaged.  And I won’t buy baby name books and baby clothes until I’m having a baby.  The reality of possibly never having either of those things is too harsh to act like they are a guarantee, only for them to turn out not to be.

I can’t let the dream get ahead of me.  I can’t wish for it to happen and wish for it to happen only to have it not happen.  Everybody’s getting married.  Everybody’s having babies, and I’m just trying to hang on and get my shit right (literally and figuratively).

The bottom line is that we do what we do based on the information that we have at the time.  That’s all we can really go on.  We can’t change the past, and we can’t predict the future, no matter how much we would like to think we can.

So is there a part of me that questions what the medications I’m currently on are doing to my future odds of having a child?  Absolutely.  But the reality is, if I’m not alive, I can’t have a child.  So I have to focus on the fact that at least on most days, I am functioning with the meds. 

I’m kind of messed up right now.  I don’t want to be one of those bitter, single people.  Worse, I don’t want to be a bitter, single, chronically ill person who can’t get a man and is sleeping her life away on the couch on Saturday night. 

Love is like heartburn.  Or heartbreak is like heartburn.  Or something like that.  I think there are some guys who don’t know the difference between love and indigestion.  It feels the same to them. 

Heartbreak feels like shit.  Heartbreak feels like getting sick all over again.

Is that weird?  Am I crazy that I compare the two?

When my life turned into an after school special a few years ago my life was everything I had always hoped it would never be.  My life became a cliché.  And I hated it.  And I fell into the arms of someone I thought I could trust.  And he lied and cheated, but will maintain to his dying day that he is an upstanding human being.  And then I met my ex, and I don’t really know what else to say about him.  I’m so conflicted.  Love.  And hate.  So much pleasure, and yet, so much pain.  

And you know what is so fucked up about this?  I’m not the fucked up one.  These guys are totally fucked up.  AND NOW I’M FUCKED UP BECAUSE OF THEM!

And I’m fucked up because of illness, too.  It was so much easier to fight when the fight mattered to someone other than me.  And I know that it should matter to me when it’s just me in the picture.  But it’s so hard.  It’s so hard to fight to feel good and to stay strong.

Where Do You Go When You Don’t Have Any Fight Left?

But then I realize these words do not express who I really am.  They express me when I am down in the dumps.  They are me after I was dumped by a man I dated for over a year, who I loved deeply, and thought was “the one.”  

From the first moment I was born, I came out kicking and screaming, and fighting.  

I thought that I would fight until the end, to the death, for everything that I believed in.

Where did that person go?

I let myself believe that my life was going to get better. 

And I believed that.  And was seduced by that.

Where is the person who was always waiting for the next shoe to drop, anxious and on guard, but ready for anything?  

What happened to that person, who wanted to make it through graduate school if it killed me, who now feels content to fade into the background and disappear?  

Where is the snarky 20-something who questioned my rheumatologist at every turn, who now feels like being so agreeable?  

Where is the person who put it all out there, on the floor, who wanted to live life with no regrets, only to succumb to the heartbreak of being with a boy disguised in the body of a man?

I need to cut my losses, pick up the pieces, and move on.  But I wonder how much more heartbreak I can take, physically and emotionally.  I’m fighting with GI hoping that they’ll throw me a bone.  And I’m fighting with the universe.  A bone.  Just one.  Is that so much to ask?  

I don’t want to be so caught up in what ifs (the future) that I miss the present.  And I don’t want to be so caught up in never agains (the past) that I miss the present, too.  So how to cope with the unfortunate things that life has thrown at me, all the while remaining positive, upbeat, and happy?  How do I make myself a better person, despite the hurt and pain that others have caused?

How do I battle back against all odds? 

Tuesday, August 16, 2011

When The Shit Hits The Fan (Or When Patients' Rights Go Down The Toilet)

I had a colonoscopy nearly a month ago now.  And ever since then, my gut has been off.  A week after, my gut still seemed to be under the influence of the cleansing regimen.  But then a week and a half after, the total opposite happened.  Nothing was moving.  And it made me feel like shit.

So, sorry if this is TMI, but I had this incredible, uncomfortable urge to go to the bathroom.  But despite what felt like a hundred attempts, nothing happened. 

I tried everything I could think of; laxatives, a hot bath, exercise, an enema.  Nada.  Nothing really worked. 

And it was hard for me to walk.  I was in intense pain.  And I couldn’t even stomach food.  Just the thought of putting something else into my body made me feel queasy. 

I realize that something is very wrong here.  And I’ll admit that it made me freak out a little.  I don’t like it when individual systems start going awry.  It makes me wonder what’s next. 

I didn’t want to make a big deal out of it, but I decided to try and get in to see my primary care doctor, just to make sure that there wasn’t anything obvious going on that needed to be taken care of immediately. 

Because I don’t think someone my age, who is relatively active, and tries to eat a balanced diet, drink a lot of water, etc., should have this problem to the degree that I do.  And my PCP agreed.  She said that I am doing everything right.  So why am I having such a problem?

As for the results of the colonoscopy, they were rather inconclusive.  Aside from a few minor things, everything appeared normal.  But everything is NOT normal.  Maybe the problem is not located in my gut.  Maybe it’s farther on down the line.  You know what I’m saying?  Maybe I have a tight ass.  Yes, that’s my official diagnosis.

And for those who don’t know the physiology, I’ll give you a little lesson. 

The problem with stimulant laxatives, such as Ducolax and Correctol, is that they can cause severe stomach cramps.  On the other hand, laxatives like Miralax work by basically injecting water into your gut, which is designed to help get things moving.  Personally, in my experience, I have noticed that your body can become immune to laxatives.  Even though my GI doctor has told me that pretty much anyone can take Miralax on a daily basis, I have found that for me, it eventually stops doing anything.  That leads to the type of situation that landed me in the hospital at the end of last year.  My body wasn’t moving anything on its own.  This can lead to a bowel obstruction, or worse.    

When I saw my PCP a few weeks ago, I was having some problems, which have only continued.  She agreed that I should either get in to see my GI doc before my late November appointment (which has been rescheduled, read: pushed back, three times already) or I should start seeing a new doctor, one who is better-suited to deal with my issues.  She wrote me a new referral and sent me to managed care.  Managed care called GI and basically they refused to do either of the aforementioned things.

If you recall, this isn’t the first time that GI has been unhelpful in dealing with scheduling issues.  So for the last two weeks, I have been off and on the phone with GI, trying to come to some resolution.  I think part of the problem is that “chronic constipation” is a bullshit diagnosis that no ones take particularly seriously.  The problem is more like EPIC FAIL.  At times I feel like I am tethered to the bathroom. 

My current GI doc is an uber-specialist.   I was originally sent to her because my rheumatologist is friends with her, and he also suspected that I had Colitis caused by Cellcept.  Well, Colitis is not my problem, and my GI doc specializes in that.  I think that compared to most of her patients, my GI problems probably are minor.  But it’s all relative, and my life is being negatively impacted by my gut issues.  While I give her props for being the one to do my colonoscopy, she basically had no clue who I was at my last appointment.  And that was very discouraging.  I do believe that she is a great doctor, but I think after three years, with no real resolution of my problem, she’s not the doctor for me. 

Oh, but wait.  GI is refusing to allow me to see a different doctor to get a second opinion.  When did a patient lose that right?  I mean, really?  You’re telling me that the earliest my doctor can see me is November.  And when I ask if I can get in to see some one, anyone, earlier than that, you flat out refuse to let me do that?

Isn’t it endlessly ironic that GI has such a stick up its ass?  I have really tried to be nice, but I may need to call in reinforcements, namely my contact at Patient Relations, who helped me deal with GI last time, when GI refused to give me an appointment within the two weeks that was required after I was discharged from the hospital.   

To be honest, if GI wants to ice me out, that’s fine.  Just wait until I end up in the hospital again.  Then GI will have a real fight on its hands, because while I said I am having problems – and my PCP wholeheartedly agreed – GI is dragging its feet, and I don’t really understand why.

I suspect that this problem is not totally separate, and is directly related to my other health issues because I never had them prior to getting sick.  I do suspect that some of the problem is being caused by medication.  Although since I have finally found a regimen that works, I am not anxious to start playing around with things.

But I’ll tell you one thing.  If the problem really is simply constipation, it needs to get in check, because right now, it’s worse than my lupus and RA symptoms. 

Now isn’t that a load of shit right there?

Monday, August 8, 2011

Is Chronic Illness A Temporary Home?

‘This is my temporary home
It’s not where I belong.
Windows and rooms that I’m passin’ through.
This is just a stop, on the way to where I’m going.
I'm not afraid because I know this is my
Temporary Home.’

-         “Temporary Home,” Carrie Underwood

I haven’t written for about two weeks, and I’ve been hiding out a bit.  I’ve had a lot on my mind recently. 

I’ll admit.  Until recently, it had been a long time since I thought about my diagnoses.  I mean, I think about lupus and rheumatoid arthritis all the time.  But it has been awhile since I questioned whether these labels were the correct ones.

Why is this?  Well, in the course of doing my dissertation research, at one of the conferences I attended, when talking to one of the organization heads, she asked me if my doctors were sure that I had lupus.  She suggested that symptoms of growth hormone deficiency in adults can masquerade as lupus symptoms.

I don’t even remember how we got on the subject.  But this person suggested that, despite my being born three months early, she said that given my parents’ heights at 5’6”/5’7”, I should have fallen somewhere in the middle between my actual height now as an adult and what my height should have been. 

Given this news, I was torn.  Should I explore this further?  In some ways, it seemed a bit off to me.  But the reality is, this isn’t something that my doctors would have tested for.  It takes a special kind of test, which is usually ordered by an endocrinologist.

In some ways, this experience took me back to my pre-diagnosis days, when people were suggesting snake oil cures, and all sorts of diseases, from the easily curable to the almost always fatal.

The reality is, though, that I don’t want to be on chemotherapeutic agents and drugs that are no longer commercially available in the United States, if I don’t have the illnesses to warrant such treatment. 

Having a growth hormone deficiency as an adult would require a daily injection with growth hormone.  Yes, the precise type of treatment (IV and injection therapies) that I’ve tried to avoid thus far.

I knew that my doctors would be a hard sell, and to them, this probably seemed like a harebrained idea.  But I needed to know.  Part of me wished I could just forget that the conversation ever occurred.  But another part of me asked the question what if? 

Part of me hoped that was the case.  Goodbye lupus and rheumatoid arthritis.  But part of me hoped it wasn’t, because I feel that I’m finally at a place of acceptance when it comes to my illnesses.

I was never one of those kids who started off growing “normally” and fell off the growth charts.  I was never on the growth charts to begin with.  I was born at 27 weeks gestation, weighing in at two pounds, three ounces.  I spent the first four months of my life in the neonatal intensive care unit.

To my parents and doctors, the fact that I escaped so many of the problems that premature babies tend to have – especially in the mid- to late-eighties, when babies my size almost universally did not survive – and the fact that I was normal health-wise and above average developmentally, was the concern, not that I was small.  But this has always been an issue in my life.

So I asked my primary care doctor.  And she told me to ask my rheumatologist.

So I wrote my rheumatologist the following e-mail: “I saw Dr. [PCP] today - we discussed several things - and she said this was something to ask you.  In the course of my dissertation research (which is on something sort of unrelated), someone mentioned to me that the symptoms of lupus and of a growth hormone deficiency in adults can be similar.  I know that that is not something that ever would have been looked at.  Do you think this is something to pursue, if only to rule out?  I don't want you to think that I am not confident in your diagnoses, I am.  It’s just that this person has put this bug into my butt, and it’s something I’ve been thinking about.”

My rheumatologist said what I expected him to say: “I have not heard of this connection. As you have the typical auto-antibody markers of lupus I do not know that this would be worth pursuing.”

To be honest, the person that put this idea into my head really had no business providing this unsolicited advice.  I didn’t ask for it.  I certainly didn’t want it.  And it was making me question things about myself that I really didn’t want to question.  I’m sure that this person came from a place of good intent, and was truly trying to be helpful, but it didn’t really feel that way.  It actually made me feel a bit queasy.    

I did read about the symptoms of GHD in adults, and to me, the thing that stuck out is that the symptoms seemed to be more psychological than physical.  And they are pretty broad.  I also went back and looked at the symptoms of lupus.  And like it or not, they fit so well with how I’ve felt over the last several years.  It’s not just that the lab work bears it out, as my rheumatologist said.  The way I feel bears it out, too.

And based on the way I’ve felt the last few days, with the humidity kicking up the lupus, and the change in barometric pressure kicking up the arthritis, I feel more confident than ever that this is what I’ve got going on.

So that’s it.  “We” will not be pursuing this other idea.

And for now, even though my current diagnoses are sticking, they make me realize that diagnosis is a transient state.  It’s rarely absolute.  It’s rarely clear cut. 

Even after three years of being diagnosed with lupus and rheumatoid arthritis, and finally being on a medication regimen that seems to be working reasonably well, there were things that caused me to question.  I didn’t want to question, believe me.  But I did.   

And what I realize is, irrespective of the specifics of this situation, this isn’t the first or the last time that something like this will come up.  And it’s not the first or last time that I will question my doctors. 

The unknowns of chronic illness are the most difficult aspect, in my opinion, and I think that’s what made this suggestion seem so important.  What if my diagnoses are incorrect?  What if I have this other issue?  The what ifs could go on and on endlessly, but they aren’t productive (for me, at least) at this point.  So it wasn’t really so much about what if I have GHD.  It was more of what if I don’t have what I think I have, and have come to accept?

Just as diagnosis is transient, so too is life itself.  Everything is temporary.  This body.  This life.

So I’m still here.  And for now, so are lupus and rheumatoid arthritis.