Tuesday, January 29, 2013

Taming The Chronic Illness Monster

This post comes out of the post by Maria of My Life Works Today! titled “Paying Attention To My Lupus Road Signs In January” and the post “We make our own monsters” by Duncan Cross.

In Maria’s post, she talks about the sun’s impact on her lupus and how she has to listen to her body and take the sun in gradually.  Duncan’s post talks about some of the social and environmental factors that may have contributed to his IBD.

I’m not really doing justice here to either of these two posts.  They were definitely thought provoking for me in thinking about my own illness experience.  And that’s what I want to share here.

I have been under a lot of stress lately.  It’s crazy when you are trying to finish writing your dissertation and solidifying plans for the future.  And in all this craziness, it takes me back to when I was writing my senior honors thesis at the end of my senior year of undergrad. 

And I’m hit with the reality that my body is not going to be able to do the things it did then.  That was six years ago, but it feels like it is light years away.  I’m not the same person I was then, for a lot of reasons, but mainly because I wasn’t sick, or at least I didn’t realize it at the time (more about that later in this post). 

The reality is, I cannot do what I did when I was writing my thesis.  I can’t stay up until 3 a.m. working.  As much as that was unsustainable then, it’s even more unsustainable now.  To the point where it can’t be done.  Or I won’t be able to function.  Really. 

The truth of the situation back then was that I was sick but didn’t know it yet.  I didn’t do a very good job of listening to my body.

I’ve told this story a lot, but I’m going to tell it again.  During my senior year of undergrad, I had strep throat several times, pink eye several times, and several yeast infections.  We’re talking not a normal amount for someone at that age.  But it didn’t raise any red flags.  I got antibiotics each time and those ailments would go away, although only temporarily. 

There were some other things that happened at the time, that I didn’t talk about then, and are hard for me to talk about now, because they make me feel like an idiot, like I should have known that something wasn’t right with my body, but I didn’t pay attention.

Like everything else, I attributed it to the stress of finishing college, applying to graduate school, and writing a thesis.

At some point, I noticed that when I sat with my knees up for a significant length of time, they would lock, and it would be extremely hard and painful for me to unbend or fully extend them.  I also woke up one day and I couldn’t think.  Like I tried to read e-mails and I couldn’t comprehend what I was reading.  And I put on the TV, but it sounded like the people were speaking a foreign language.  I know, it sounds crazy.  And at the time, it did scare the shit out of me.  But I didn’t do anything about it because I didn’t know how to talk about it.  Since it only happened one time and never happened again, I thought it was a fluke.  Like I said before, I thought it was just stress.

But to anybody who knows anything about the immune system, this probably all spells trouble, and a lot of it.

But things are different now than they were then.  Then, all I cared about was school.  I felt invincible.  Now, my priorities have changed.  There are other things in my life, other people. 

It’s hard to look back at what you thought was the calm before the storm, only to realize that the storm was already brewing, it just hadn’t made landfall yet. 

But I can’t live forever wondering why this happened to me.  Or what caused it.  Or if I could have stopped it.

I don’t know what the trigger was, and I’ll probably never know.  But there was the crazy episode of vertigo I had, which I think was a precursor symptom.  That should have been the red flag, but even that wasn’t.  Because all of these things weren’t happening at the same time. 

I agree with Duncan that so often we are blamed for our own illnesses, and it shouldn’t be that way.  Something set these events into motion, whether they happened while I was young or only more recently, it doesn’t really matter. 

Those who forget the past are doomed to repeat it.

I can’t change the past.  I can’t make red flags out of disparate occurrences. 

I missed signs then.  How do I make sure that I don’t miss them now?

I don’t want to be hyper-vigilant.  And since I’ve been off of immune-suppressing drugs for a little while now, I don’t have to be quite as crazed as I was before.  But I also don’t want to miss warning signs. 

I think for most of us, the primacy of illness in our lives ebbs and flows.  For me, right now, the key is finishing my dissertation, and this seems to be coming before my health.  What I mean to say is that I’ve been feeling okay lately, relatively speaking.  But I wonder how much or how little of a place I feel illness has right now is simply in my head.  It hasn’t really changed, it’s just that my priorities have.

But this worries me.  As I suggested above, when I was writing my thesis at the end of undergrad, everything was put aside in favor of that project.  And in the end, it is probably one of the things that brought out my illnesses.  Although the reality is that I was sick before that point and just didn’t know it. 

So how do you find balance in a life that is filled, not only with illness, but serious duties and commitments?

For me, it’s managing stress.  My stress level has been pretty high lately and my mood pretty low, so I need to work on decreasing the former and increasing the latter.  And the bottom line is, these are things I can control.  I can’t control my illnesses, but I can control my attitude.

So the moral of the story is to listen to our bodies, to pay attention to the signs.  The other moral of the story is that these illnesses are spurred by something in our environment, although we may never be able to figure out exactly what it was that these events into motion. 

I’m trying to find balance as I push through one of the most difficult experiences of my life.  Writing a dissertation is hard work, and writing a dissertation while working within the constraints of multiple chronic illnesses is even harder.

But in some ways, maybe these self-imposed/illness-imposed restraints will actually be really helpful.  Maybe that’s the lesson here.  In the past, I have done a sucky job of listening to my body, and it literally led to my undoing.  Now, when my body speaks, it also forces me to listen.  I wish that lesson could have been learned some other way, but I’m not sure I ever really would have gotten it unless my body hadn’t said STOP!  This is too much.   

I’m truly grateful for the opportunities I’ve been given, and I’m trying to finish my PhD strong.  I know I can do it.  I just have to be patient with my body and respect its limits.  If I can do that, I’ll be the one to reap the reward in the end. 

Thursday, January 17, 2013

Tracking Bodily Functions: Important Or Too Much?

Ah, the information age.  But when is all just it too much?

The web provides endless information, especially as far as medical topics are concerned.  There are blogs that help patients create community, there are medical institution websites and the like. 

As I’ve mentioned before, with the advent of electronic medical records and e-prescribing, doctors and patients can connect in unprecedented ways, and patients have unparalleled access to their medical record and can interface with it. However, there are flaws with these systems.  They’re only as perfect as the people that create and utilize them.

Almost anything you can think of is available; from the ridiculous and absurd to the amazingly helpful.

But I warn you, this is a shitty subject…

In my post about Nurse Ratched, I talked about my difficulties with chronic constipation, and the fact that she was holding me back from getting the medication that my doctor felt would work for me. Well, as it turns out, and contrary to the cranky nurse’s opinion, my insurance very quickly approved the prior authorization for Amitiza.

And guess what? I started taking Amitiza, and I started pooping. Sorry if that’s TMI, but it’s the truth.

And what is a girl to do when she goes from “stopped up” to “moving smoothly”? 

Well, celebrate of course!  Give me a gold star for every BM! 

On a whim, I decided to see if there was some sort of App that would allow me to track my bowel movements.

Gross, maybe, but useful, yes.

The fact that an App even exists says that there are other people – at least one other person – on the planet that thinks this is important, too.

As I found, there are actually several Apps available for this purpose, and it depends on how technical you want to get about it (for example, also allowing you to track water and fiber intake). 

But I will warn you, when you are doing an ITunes search with terms such as stool, bowel, and poop, you will have to sift through a lot of random, weird crap (no pun intended). 

So getting back to the original question, when is it important to track your bodily functions and when is it just overkill? 

It’s one thing if a doctor specifically asks you to track your fat intake, calories, fiber, or even blood pressure.  But what about when you aren’t specifically asked or told to keep track of something? 

For me, I felt that it was important to keep track so that when I see my GI doc next month, I can very surely tell him that things have vastly improved.  They still aren’t perfect, but I’ll definitely take what I can get at this point.

In some ways, this whole process feels very obsessive to me. The second I’m out of the bathroom, I’m entering the information into my IPhone.  It gives new meaning to having your entire life on your phone.   

And is it sad that going to the bathroom has become the most exciting part of my day?  It’s sadder that I can tell you what day and at what time the dirty deed took place, and the quality of it, according to the Bristol Stool Scale. 

Yes, people, this is my life.

Thursday, January 10, 2013

Renewal Means Reflecting On The Past

There are things that stay with us.  Some are words or smells or sounds. But there are also moments, people, bonds.

It has been four years since my cousin died and nearly a year since my uncle died. Both of cancer, different kinds.

It is sometimes hard to think about the future, knowing they won’t be there.

I’ve talked before about how I was able to bond with my cousin and his wife, when they would visit for his treatments.  We would go out to lunch.  And in the midst of their ordeal, they took the time to see how I was doing.  This was when I was at my sickest, when I didn’t yet have a diagnosis.

And my uncle was my link between my rheumatologist and I, and he would provide me with invaluable advice. 

There have been so many times over the past year when I wanted to call or e-mail him, to ask him what he thought I should do.

But I couldn’t.  I can’t.

It’s hard to lose the people who you feel understood you the most.

It’s the bond of someone that understands the fear and confusion, who understands what it’s like to be sick and in pain.

And over the years, there has been some measure of survivor guilt.  Why am I still here and they aren’t? For those who have never experienced this, this is not a suicidal ideation.  It isn’t a matter of me not wanting to be here.  It’s a matter of wondering why the dice were rolled and went one way rather than another.

So yes, part of the reason I miss them is selfish.  It’s because they aren’t here to provide advice and support.  But there’s also the fact that there is so much they won’t be able to experience; my cousin’s children’s bar and bat mitzvahs, their high school graduations, college, marriages; my uncle won’t get to see my cousin graduate from medical school. 

In the depths and quiet of winter, I find myself thinking about my cousin and uncle more and more.  It might feel like renewal won’t come until spring, but renewal happens when we want it to.  Maybe because it’s a new year, yes.  But maybe because we simply want to get a fresh start, and this can happen in any part of our lives, at any time.

For me, the new year means reflecting on some parts of my past, like the important people who have impacted my life, especially my life with illness, but who are not here any more.  But it also means trying to forget other parts of my past that are holding me back, like failed relationships. 

I have goals for 2013, some simpler than others.  I want to try and kick my diet pop habit, I want to stop eating French fries at restaurants, I want to kick my addiction to pop tarts, and I want to read at least a book a week. I want to finish my dissertation and start a life together with my boyfriend.  I want to write a memoir.  I want to take control of my GI issues, which have really plagued me the last few years.  And I want to find a treatment that works for my lupus AND RA.

The past few years haven’t been easy.  There has been love and there has been loss.  There have been extreme highs and extreme lows.  But more than anything, there have been people who have marked each moment for me.  These moments strung together are the story of my life.  And without them, I wouldn’t have much of a story.

So on the path of renewal, we must reflect on the past in order to get a (somewhat) clear picture on the future.  It is only by acknowledging our struggles that we are able to succeed.

Friday, January 4, 2013

2012: The Year In Review

I’ve been traveling, so I’m getting a late start on commemorating what I endured in 2012.

An asterisk denotes posts that are my favorites; if you don’t want to go through every single one, you can get the highlights from those.

2012 was a year for many things:

The year of the best and the worst:

The year of Humira:

The year of disillusionment:

The year of advocacy and activism:

The year of hanging tough:

The year of information:

The year of injuries:

The year of grieving losses:

The year of the labs:

The year of the flare:

The year of reviews:

Looking forward to sharing 2013 with all of you!


And if you’re interested, here’s what I read this year:

1.       “Pictures of You” by Caroline Leavitt (F)

2.      “You Know When the Men Are Gone” by Siobhan Fallon (F)

3.      “Dwarfism” by Betty Adelson (NF)**

4.      “The Magic Room” by Jeffrey Zaslow (NF)

5.      “Against Tall Odds” by Matt Roloff (NF)**

6.      “Dwarfism” by Short Stature Foundation & Information Center, Inc. (NF)**

7.      “Life is Short” by Mark Trombino (NF)**

8.     “Little People” by Dan Kennedy (NF)**

9.      “Private: #1 Suspect” by James Patterson (F)

10.  “Dwarf’s Don’t Live in Doll Houses” (NF)**

11.   “Private Games” by James Patterson (F)

12.  “MWF Seeking BFF” by Rachel Bertsche (NF)

13.  “The Boy Who Came Back from Heaven” by Kevin and Alex Malarkey (NF)

14.  “Nothing Short of Joy” by Julie Genovese (NF)**

15.   “The Pioneer Woman” by Ree Drummond (NF)

16.  “Me and the Ugly C” by Becky Dennington (NF)*

17.   “Downtown Green” by Judy Christie (F)

18.  “White Coat, Black Hat” by Carl Elliott (NF)**

19.  “True Strength” by Kevin Sorbo (NF)*

20. “Heft” by Liz Moore (F)

21.  “Hunger Games” by Suzanne Collins

22. “Guilty Wives” by James Patterson (F)

23. “Skinnydipping” by Bethenny Frankel (F)

24. “Dream New Dreams” by Jai Pausch (NF)*

25.  “Limb From Limb” by George Hunter and Melissa Preddy (NF)

26. “11th Hour” by James Patterson (F)

27.  “A Slaying In The Suburbs” by Steve Miller and Andrea Billups (NF)

28. “Bloom” by Kelle Hampton (NF)*

29. “Fifty Shades of Grey” by E.L. James (F)

30. “Fifty Shades Darker” by E.L. James (F)

31.  “Fifty Shades Freed” by E.L. James (F)

32. “What Remains” by Carole Radziwill (NF)*

33. “I, Michael Bennett” by James Patterson (F)

34. “Shoe Addicts Anonymous” by Beth Harbison (F)

35.  “Secrets of a Shoe Addict” by Beth Harbison (F)

36. “Hope in a Jar” by Beth Harbison (F)

37.  “Thin, Rich, Pretty” by Beth Harbison (F)

38. “Always Something There To Remind Me” by Beth Harbison (F)

39. “Mortality” by Christopher Hitchens (NF)*

40. “Still Alice” by Lisa Genova (F)*

41.  “Left Neglected” by Lisa Genova (F)*

42. “Gone Girl” by Gillian Flynn (F)

43. “Having Epilepsy” by Joseph Schneider and Peter Conrad (NF)* **

44. “The End of Your Life book Club” by Will Schwalbe (NF)*

45.  “Passage Through Crisis” by Fred Davis (NF)* **

46. “Happier At Home” by Gretchen Rubin (NF)

47.  “Grow Your Handmade Business” by Kari Chapin (NF)

48. “The God of Driving” by Amy Fine Collins (NF)

49. “The Dog Story” by Matt Cavallo (NF)*

50. “When In Doubt, Add Butter” by Beth Harbison (F)

51.   “In Sickness As In Health” by Barbara Kivowitz and Roanne Weisman (NF)*

52.  “Handmade to Sell” by Kelly Rand (NF)

53.  “Brain on Fire” by (NF)*

(F) – Fiction
(NF) – Non-fiction

* Books specifically of interest to chronically ill readers
** Academic books/books for my research/dissertation