Not Out Of The Woods Yet

I started physical therapy again last week.  Unfortunately, my old PT moved to a satellite office, so I have to see someone new.  And as of right now, my insurance only approved a consultation visit.

I think this must be GI purgatory.  This is the place where they send people whose bowels are possessed by the devil. 

Apparently I have a sluggish colon, plus some of the muscles at the end of things are just frozen.  They’ve stopped working.  Explains why taking a dump has become akin to an Olympic sport.  Seriously, it’s freaking exhausting to be tethered to a toilet, not knowing when you’re going to shoot blanks, or actually drop some kids in the pool.

I’m sorry for being so blunt.  Actually, I’m not.  Not really one bit.  I pride myself on presenting my illness experience in the most truthful, if not funny, way.  And sometimes, you have to laugh. 

Forget Moves Like Jagger.  I’ve got moves like Elvis.  It’s all in the pelvis.  Ha, ha, ha, ha, ha.

So anyway, back to purgatory I go.

And it’s great to get a rectal exam from not one, but two doctors.  The joys of this place are just unending, let me tell you.

Hopefully we can avoid the word throw-up that included bible verses from a religion that I don’t belong to. 

So the new PT is asking me about health issues.  And she says, Aside from lupus and RA, you are in perfect health?  Is that a sick (pun intended) joke?  Is she mocking me?  Me?  Perfect health?  Ship shape?  Mint condition?

I don’t think so.

This body, with its freezing joints, and the possibility that anything I come into contact with could make my body go crazy?  Is that the definition of perfect health?  I certainly hope not. 

Given the fact that I’m 26, but I feel like I’m 80 years old part of the time would suggest to me that my body has seen younger, better days. 

Things could be worse, for sure.  But they could definitely be better.

Then she tells me that my posture is bad and that because I am short and my legs are longer than my torso, I’m basically pre-destined to have a difficult time doing my business. 

What the heck is up with these PT people?  They are so tactless, it’s unbelievable.  And don’t you just love it when healthcare professionals start nitpicking and telling you you’ve got more wrong with you than you previously thought (in not necessarily a medical way)?

So I’m annoyed with the whole PT experience.

And I’m not being a good patient, and am avoiding the flu shot like the plague.

After the whole pneumovax debacle, you can say that I’ve developed a slight aversion to shots.  While getting vaccinated may help me in the long run, in the short run there is a lot of anxiety.  Will the shot be given correctly?  Will I have a reaction to the shot?  Am I better off not getting the shot at all?  I will probably just wait until my rheumatologist appointment that’s in the middle of November and get it then.

But even then, I’ll do it with my eyes peeled.      

If you go to the Lupus Foundation’s website, go to the Research tab, and then select Lupus Research Summaries, there is a flu link.  The two summaries basically suggest that people with lupus who are immune-suppressed may not gain full immunity from one flu vaccination, and that getting two might offer better protection.

I really hope that’s not the case, because for me, this is going to be a one shot deal.  Literally. 

As the weather changes to cold and gray, there is a strong sense of foreboding.  

I’m ever vigilant.  I have to be.  In 2009, I was hospitalized in October.  In 2010, I was hospitalized in November.   Are you sensing a pattern here?  And not a very good one.  This year I probably won’t take a sigh of relief, until, um, I don’t know, spring?

So please, just let me get through the rest of 2011 without any health crises.

Is that so much to ask?

As winter creeps up on us, I feel a weight bearing down on my shoulders.  

The cold has increased my pain and stiffness to a significant degree. 

Clearly, I’m not out of the woods yet.   

“I’m Just Like You – Children With Psoriasis” Documentary

In commemoration of World Psoriasis Day, which is October 29, 2011, I am reviewing the documentary, “I’m Just Like You – Children With Psoriasis,”* and hopefully helping to bring attention to this disease. 

I’ll admit that due to my own ignorance, I didn’t really know what to expect from this film.  I knew that psoriasis was a skin disease, but that’s as far as my knowledge went. 

You may have heard of psoriasis because of celebrities that have the disease; LeAnn Rimes (who is the current spokesperson for the National Psoriasis Foundation), Kim Kardashian, and golfer Phil Mickelson, who has psoriatic arthritis. 

According to the National Psoriasis Foundation, psoriasis is a chronic, autoimmune disease of the skin, and is the most common of all the various autoimmune illnesses. 

For some of us, our illnesses are, for the most part, invisible.  And in some ways, we are lucky.  Those who have psoriasis don’t have that luxury. 

And this can be very stigmatizing, especially for children.

The film chronicles five families whose lives have been impacted by the disease.     

These families have explored a variety of treatments, from naturopathic medicine to biologic medications.  The film not only gives voice to parents and children, it also gives voice to siblings, doctors, and many others.

According to the film, 1/3 of children with psoriasis will be diagnosed with psoriatic arthritis. 

The film offers hope to those out there who are affected by psoriasis or know someone that is affected by it. 

It also shows the importance of support, from family, friends, doctors, and fellow sufferers, which can impact the quality of life of the patient.  The film helps to bring these families together so they know they aren’t alone.

It also shows the impact that chronic illness can have on children.  Forced to grow up before their time, the children who shared their stories are wise beyond their years, and should be a lesson to all of us.

If you are in the Los Angeles area, the film will be premiered on October 30, 2011 at 3 p.m.  For more information about this documentary, the screening, or to make a donation, visit www.sparklestone.org.

* I received a free copy of this documentary from Bender/Helper Impact public relations, and agreed to review it.

“I Coulda Been A Contender”

No, this is not some freaky ass rheumatoid arthritis contraption.  It's gloves for kickboxing.

 

 

I’ll admit it.  My last post was kind of down in the dumps.  And it was two weeks ago.  But things have changed.  Why?  Because I had to get off the couch.  I go through these phases, especially as the weather changes and my pain increases.  My couch becomes my own private island, with everything I need on it.  TV remote control, reading material, blanket…

But I can’t, and wouldn’t want, to stay on the couch forever.  So…

Coulda.  Woulda.  Shoulda.  But I didn’t.

And that’s not what I’m going to focus on.

If I were my coolest friend, this is what I would say to me right now: “WTF, biatch?  You are a contender.  YOU ARE A CONTENDER.”

And if there’s one thing that you know about me – although there is much to know – it’s that I don’t like feeling sorry for myself.  Because inevitably, in a pity party, it is only ever a party of one.

So often in dealing with chronic illness, it’s so easy to think about and lament our limitations.  We mourn all of the things that we cannot or are no longer able to do.  It is a much more positive, albeit more difficult task, to focus and capitalize on all the things that we can do.

In the last two weeks, two people that I went to high school with have died from drug overdoses.  This profoundly saddens me.  25 and 27 are far too young ages to die at.  But the thing that frustrates me the most is that, on some level, these deaths could have been avoided.  Of course, I don’t know what was really going on the lives of either of these people, and I don’t think we ever fully know what is going on in someone else’s world. 

But here we are.  Legions of chronically ill people, fighting everyday to get the most that we can out of the lives we have left. 

I think sometimes illness takes us out of life a little bit, along with taking the life out of us.  We feel like we are less, will be less, and will achieve less than our healthy counterparts.  But you know what?  I see a lot of healthy people around me doing a lot of stupid shit.  Stuff that certainly doesn’t make them a contender for anything other than the award for being an idiot.

I know, I’m being judgmental here, and not very congenial.  But the one thing I don’t ever want anyone to say about me is that I sat around and wasted my life – not because I was sick, necessarily – but because I was afraid of getting hurt or being let down.

Because the reality is, if you take yourself out of life in a metaphorical sense, you might not get hurt, but you won’t get loved, either.  And that is profoundly sad.

Maybe it’s the kickboxing.

Maybe it’s the hot pink feather in my hair.

The other day in kickboxing I was working with one of those resistance bands and I broke it.  Not sure how I managed that one.  I think my instructor was as surprised as I was. 

I don’t know exactly what it is.  But there’s going to be a sea change.  I can feel it with every fiber of my being.  It’s bubbling, right at the surface, ready to explode. 

Because for the first time since I got sick, and maybe even for the first time in my life, I feel empowered.  I feel like I have the ability to make my life, and the lives of others, better.    

I’m trying to live my life to the fullest, and not get too down on myself about the mistakes that I’ve made.  I’ll admit it.  There have been many in the last few years.  But the biggest mistake, in life and in illness, has been not putting myself first.  It’s been putting everything and everyone higher on the list than me.  And I fear that this may be my ultimate downfall.  It’s a hard habit to break, and it’s not totally an unselfish one.  I want people to like me, dammit.

During my non-college school years, I was never one of the cool kids.  I was dorky and awkward.  But, oddly enough, since I got sick and found the amazing community of chronic illness bloggers, I feel like one of the cool kids.  It’s odd to think that through illness, I found my niche.  My people.  My home.

I am normally a glass half empty kind of girl.  But right now I’m choosing to look at the glass as being half full.  My life is different than I anticipated it would be.  But for right now, I think I’m finally where I want to be.      

There’s no telling what adventure I’ll be going on next.

Writing a memoir…

Making a documentary…

Getting a tattoo…

The “Rocky” Steps…

Skydiving…

Mount Everest…

The sky’s the limit.  There’s no stopping me now.

And as always, I hope that you will all be here, and join along with me for the ride.

Leslie’s Life In Lupus Land

I’m not sure I believe in fairy tales anymore.  But Lifetime movies, and after school specials?  Totally.  Because it feels as if my life has become one.

I can’t really explain the drama that befalls me, because I hate drama.  Despise it.  And yet, it keeps on coming.

And then there’s lupus.

For me, toxic relationships aren’t really an option.  If a person continually does things that cause me to flare, guess what?  They’re so out of here.

But we don’t always get a choice about who comes in and out of our lives, and when.  And this lack of control, as with lupus, is the problem. 

I’ve been physically and emotionally exhausted lately.  And totally unproductive. 

And the way my right rib and side feel, and my right hip, I’m totally flaring.  It’s the weirdest thing, this body of mine.  And I have to go through the laundry list of possibilities…A flare?  Appendicitis?  Kidney Stones?  Because having lupus means that a pain just isn’t pain.  It could be the sign of something worse to come.  

And very few people understand that.  I cringe when I’m in class or on the bus and there is a cougher, because the likelihood that I end up with a cough the next or a few days later is great.  So the reality is, I could never leave the house.  That would offer some protection for my immune system, but it would greatly diminish my quality of life.  So I get up, get out, and soldier on.  But it’s the soldiering on when illness AND the rest of the world comes knocking at the door, that makes it so hard.

But instantly, my survival instincts kick in, and I realize that I have to stop the flare at the source.  No, not my body.  I have to purge my life of the cause(s) of the flare.   

To be honest, the reason the physical part is heading in a downward spiral is because the mental part is pretty much in the toilet right now.  I’ve been dealing with some personal stuff.  And I’ve come to realize that I’m a magnet for immature, emotionally unavailable assholes.  Which is funny because I would consider myself not to be an immature, emotionally unavailable asshole.  I guess it proves the theory that opposites attract, right?

Well, I’m so done with it.  I’m sick of dating guys who are only dating because of the social pressure they face, when in reality, they don’t have time or space in their life to see, let alone care, about another human being.

That’s not the way I operate.  I don’t do anything halfway. 

And neither does my body. 

And when my body calls, I have to respond.  So sorry that I spent the weekend on the couch because I felt physically and emotionally like shit.  Apparently that makes me not cool enough or something.  And I’m not actually apologizing.  It’s more of flipping the bird to any guy who has treated me badly. 

Because honestly, I dare them to a spend a few days in my shoes, to see everything that goes on, to see the time, effort, and thought that goes into everything I do, including dating, and then look at me and tell me that I’m not good enough.

There’s no escape.  Lupus is always here, knocking at the door, lurking around a dark corner, and always ready to take me down for the count.  So it would nice, if just once, there was a positive distraction, something to help take edge off of the ever-present eye of lupus. 

But the daily trials of lupus are something that people can’t understand until they’ve experienced it.  And it’s something that I swallow down and keep inside.  Unlike the carefree 25 year old guy who wants to party all the time, I don’t have that luxury.  I only have so much energy stored up, and lately, it’s never enough.

And the reality is, if a guy decides he doesn’t really want to get to know you when you’re relatively healthy, he definitely won’t want to get to know you when you’re sick.  I just want someone to be there.   I don’t think that’s expecting too much.  I just want someone who won’t say, “I’ll just throw a blanket over your head and go to work.”  Because I have literally had guys tell me that that’s what they would do.  And we never make it far enough to see if that’s really true.

So let’s face it.  I’m struggling a bit with a past that feels kind of fucked up (relationship-wise), and a future that’s uncertain (health-wise, and everything-wise).  In some ways, I hate that lupus is the litmus test for relationships.  On the other hand, though, it is a great way to see if the other person will be there for you when it really counts.  It’s definitely a deal breaker. 

Illness wasn’t directly a deciding factor in this most recent situation.  But some of the insensitive things that were said made me realize that this person wasn’t ever going to get it.  And would I really expect a guy who spends his days with high school students – and matches their maturity level – to understand anything more about the world than sex and drinking games?  No.  Didn’t think so.    

So don’t talk to me about an hour away being too difficult.  I put the D in difficult.  And don’t tell me that it’s such an inconvenience.  You want inconvenient?  Look at chronic illness.  That’s inconvenient.  See, the way I work, which is obviously not the way that all people work is that anything worth fighting for isn’t going to be easy.  But a lot of people just expect things to fall into their lap.  Well, I’ve had to work hard for everything in my life.  I don’t expect there to be shortcuts.  And my life continually reminds me that there aren’t. 

A trap I fall into too often is thinking I can’t be too picky because of my illness baggage.  But the reality is that if someone can end things because they view a 40 minute drive as too “long distance,” then I can stick to my guns that I don’t date younger guys.  I mean, if you figure that a 25 year old man has the maturity level of a 12 year old, is there any chance that I will find someone under the age of 60 who is mature enough for me?

And I think I have to start following my own advice, not telling anyone about a relationship, maybe even until I’m engaged.  Because it seems like once other people know, it all goes to shit.     

I don’t believe in fairytales, but I do hope, that some day, some guy will look at me and think that I’m the smartest, most beautiful girl in the world, warts and all.  Until then, it’s just another day, week, month, year in Leslie’s Life In Lupus Land.

I wish it came with a Mad Hatter and White Rabbit.  That would certainly make things more interesting. (Although as far as men go, they were pretty fickle, too)