Gone, But Not Forgotten

It has been a few weeks since my last post.  I’d like to say that things are good.  In some ways, they are. 

But there’s a “but” in there.  You knew it was coming, didn’t you?

Symptom-wise, I have been doing pretty well.  The Methotrexate injections seem to be working fairly well.  Given the cold weather, my pain has been pretty much in check. 

But for several months now, I’ve been having dizzy spells and headaches that I finally couldn’t ignore.  Now these are different than anything I’ve ever had before.  I tried to wait things out, hoping they would disappear, but no dice. 

So I went to my Primary Care Doctor.  She is very patient and kind, and very thorough.  It’s so hard to wind through the lupus-rheumatoid arthritis maze, trying to figure out if symptoms are a new manifestation of my disease or something else.  And she helps me decipher through it, which I appreciate.

There was nothing immediately glaring that could answer the question to why I am having these issues.  So she referred me to a neurologist, a neurologist that I won’t be able to get in to see until the end of March (but anyway…).

And she had some labs drawn.  And this is where the “but” comes in.

My thyroid, blood sugar, and hemoglobin were normal, so none of those explain the dizziness or headaches.

But my liver enzymes were elevated and my white blood cell count was low.  Both of these levels are worse than they were the last time they were checked.

Really?  Seriously?  Are you freaking kidding me with this stuff?

My Primary Care Doctor is sending me the results and told me I should probably contact my rheumatologist, because it could be a medication thing.

And I already know that is. 

So I’m just going to say it.

Fuck!

It’s the MTX. 

But I feel good.

So for now, since I’m finally skilled at MTX self-injection, I’m going to keep doing it. 

I feel good, dammit. 

What this new turn of events actually means, I have really no idea at this point.  I will e-mail my rheum once I get the actual results so I can provide him with some numbers. 

My liver enzymes have been chronically elevated for years now.  No one has been able to figure out why, really.  And the white count, well, I don’t feel sick, so…

Why does this always happen?  Why do we finally find a medication and administration form that works, only to find out that the medication is making me sick?  Healthier in some ways, sicker in others.

Honestly, I’m pissed off at illness right now.  There are other reasons, which I will leave for another post.  But why?  Why is this happening?   

I’m feeling pretty good these days, so why is it that the labs have to show otherwise?  Can’t things ever just be simple?    

Seems like I can’t quite ever catch a break.  And that’s really annoying.  I try to be a dutiful patient, but even when I am, it doesn’t get me very far.

Am I robbing Peter to pay Paul? 

If you go over to Health Central and check out my post on RA Meds And Pregnancy, which is by far the most depressing post I think I have ever written, I explore the issue of being on meds to stay healthy that may have other, not-even-considered negative effects.  

I guess in some ways, this is just the game we play.   We do the medication dance, and it takes a long time, sometimes too long, to find a regimen that works.  But what happens when you think you have one that works and find out that it’s doing other things it’s not supposed to do?  What then?  What now?

Patients For A Moment: The Year In Review Edition (2011)

The theme for this edition of Patients For A Moment is: The year in review.

I posed the following question:

What is/are your favorite/best blog post(s) of 2011?

Participants in this edition had the option of either submitting a post they wrote sometime during 2011, or coming up with a summary piece of their major happenings of 2011.

And it seemed like nostalgia was a pretty popular theme:

Aviva from Sick Momma stepped up to the challenge of writing about the past year in the post Looking Back At 2011.  While she opens the post lamenting her lack of memory, I think she does a good job of sharing her journey over the last year with us.

Oh My Aches And Pains!’s Selena takes us on a ride through the posts that her readers found to be the most popular in the post A Year In Review: Some of My Best Posts from 2011.  I’d love to know how she got those statistics.

Kelly from Fly With Hope shares an important post that brings awareness to the taboo topic of Migraine And Suicide.  In her own words: “[This post] was my best post because it drew the Migraine community together and gave them a chance to discuss a difficult subject without shame. Though I've been blogging since 2008, this has been by far the most read post […] So that it was not just my voice, but the voice of a community speaking out and supporting each other.”

Megan G of Sticks And Stones shares a poignant post she wrote in September of 2011, I Hate Stairs, in which she laments some of the limitations that come with Rheumatoid Arthritis.

Sometimes, it is Lupus’s Iris offers us a post she wrote in October of 2011 about not being able to wear high-heeled shoes as casualty of lupus.  In her own words: “Chronic illness affects all aspects of life - but sometimes it’s the ‘little’ things, like not being able to wear fabulous high-heeled shoes, that have the biggest effect.”  I’m sure many of us can relate to the post De Agony of De Feet.

Maria from My Life Works Today! shares a post that she wrote in August of 2011.  The post, Elevator Speech, explores the phenomenon of chronically ill spending a lot of time in elevators, and asks us to think about how this time can be an important part of our illness experience.  

Nip Pain in the bud & let your Soul blossom’s Shannon offers up two of her favorite posts from 2011.  The first is Turning the Kaleidoscope to Set Your Phoenix Free and the second is Faith Renewed by More than Coincidence.  A new edition to the blogosphere in February 2011, Shannon said of these two posts: “[T]hey really reveal what I’ve gone through in my chronic illness journey and also show how I have managed to overcome the darkest parts of my struggle and find hope.” 

Jamie from Chronic Migraine Warrior provides a nice summation of her year in the post

A Year In Review (2011).

Although putting myself last here, I got things in motion with my post 2011: The Year In Review.  Although 2011 was a year I’d rather forget, I still tried to be reflective about both the good and the bad.

I’m also taking a bit of liberty here and am providing the links of a few of my favorite chronic illness bloggers that wrote “year in review” posts, but didn’t submit them themselves to PFAM.  So be sure, along with all the other great posts I’ve mentioned thus far, to check out Laurie’s (A Chronic Dose) post On New Year's and Kerri’s (Six Until Me) post Year In Review: 2011.

Thanks to all who participated in this edition.  It was great to have old friends and new-to-me bloggers join in the fun!

Patients For A Moment is now monthly as of this edition (January 2012).  The February edition will be hosted by Aviva at Sick Momma.  Look out for her announcement, and remember that each edition will go live on the 15^th of each month. 

The Patient’s Checklist”*

 

Most of us know that whether we are dealing with our own health crises or that of someone close to us, it can be a stressful and overwhelming experience, to say the least.  

But there is a new book out, “The Patient’s Checklist,” by Elizabeth Bailey, that seeks to make the experience a little easier. 

Bailey, who is not a patient herself, but found herself caught in a medical minefield when dealing with the illness of an elderly parent, tries to idiot-proof what can be a complicated and scary maze; with too much information, provided too quickly.  

Bailey used to be a movie producer, and checklists were a must in that profession.  So she took inspiration from that, and created checklists designed specifically for patients and their families. 

And with the harrowing statistics about medical mistakes and mishaps she provides throughout the book, proves that doctors are only human and that while we need to trust them, we also need to pay attention, ask questions, and be attentive when there are seeming inconsistencies in care and treatment. 

The following are the checklists you will find in the book:

1.       Before You Go

2.      What to Bring

3.      During Your Stay

4.      Master Medication List

5.      Daily Medication Log

6.      Daily Journal

7.      Discharge Plan

8.     Insurance

9.      Doctor Contacts

10.  Family & Friends Contacts List

The book is easy to read, and it’s in a handy format that lets it do double-duty as both a reference guide and as a personal record keeper.

You could easily photo copy the lists and create your own health binder, or you can write directly in the book, as she provides several blank copies of all of the lists and logs she presents.    

Throughout, Bailey emphasizes something very simple, but very important: “The person first, the patient second.”    

So often, we are seen as our diseases first, and not seeing the whole person can set us up for critical mistakes and errors to be made.

This book helps put nearly everything you could possibly need for a hospital stay or health crisis right in front of you.  It empowers the patient or patient’s family to be an active member of the healthcare team. 

Bailey’s common sense, no nonsense approach should put anyone, whether patient or caretaker, at ease, that we have the power to take control of our lives and our health. 

* I received a free copy of this book from the publisher, Sterling Publishing Co., Inc.  However, the review presented here is solely based on my opinion of the book.

Patients For A Moment Is Here January 15th

I’ll be hosting “Patients For A Moment” on January 15^th.

The theme for this edition is: The year in review. 

What is/are your favorite/best blog post(s) of 2011?

You can participate in one of two ways:

1. Provide me with all of the required submission information on a post that you wrote sometime between January 1st, 2011 and December 31^st, 2011

OR

2. Write a post in which you wax nostalgic about the posts you wrote over the last year. 

In other words, you don’t actually have to come up with a special post for this edition, unless you want to.

If you would like to submit a post, e-mail the following to gettingclosertomyself@gmail.com:

Your name (as it should appear)
Your blog’s name
Your post’s title
Your post’s URL

* And also for this edition, tell me why it’s your favorite/best post, if you are selecting from previously written posts.

And make sure you put “PFAM” in the subject line of the e-mail.

All submissions wishing to be considered should be received by 11:59 p.m. Thursday, January 12^th.