praise for a new doctor

I confess....I've talked about doctors before. Between my chronic health problems and the fact that I've moved a good bit as an adult, I've seen a LOT of doctors. So I consider myself something of an expert.

I'd booked an appointment for a sleep specialist a while back. I have never slept well. I honestly didn't know that it was abnormal to need at least an hour from pillow-time to sleep-time until I got to college and had roommates. I'd had escalating trouble in the past few months though, often getting up and reading in the living room around 3AM b/c it was frustrating to lie awake. I often got only an hour or so of sleep for several nights in a row.  This would sometimes persist even if I took a prescription sleep aid.  In the past couple weeks, I gave in and took Ambien nightly...previously I only allowed myself to take it twice a week but sleep has been the only "break" from my high pain level and I've needed it. I also added an additional medicine to my routine that helps patients cope with pain.  The new medicine, the Ambien, and two Tylenol PMs have been working really well but I kept the appointment because I wasn't sure it was a great longterm approach.

Anyway, that's the history that brought my to Dr. A.R.K. It was probably the best experience I EVER had with a doctor. She spent a good 45 minutes with me. She actively listened and asked questions, both her standard ones and questions that followed up on what I said. She expressed concern for my level of pain, noting she'd like to meet me when I didn't look like every muscle in my body was tense.  She suggested raising a minor change with my GP that might help take more of the edge off the pain.   She praised me for managing to wean off pain meds, noting it was always hard but clearly worse when the pain was still there. She took my overall health into account when making the recommendation that I go ahead and use the "cocktail" that's been working and suggested another change in timing that might help me skip the Tylenol PMs (it did work last night). I was concerned that it wasn't good to take every night but she said it was fine and noted she couldn't fathom not having me do what works so that I at least get the break from the pain when I sleep. She said that she would be happy to work with me over email (she's with Geisinger and they have a good online health mgmt system) to talk about trying to sleep without the medicine but that I shouldn't worry about it until after the pain was under control.   She offered to talk standing when she noticed I was propping my weight on my arms/hands to keep the pressure off my low back.

This is rambly. Blame the fact that I'm still in pain.

But I really appreciated the level of true patient care....especially when I feel a bit left to suffer by the neuro (he IS referring me to pain management folks but hasn't offered much help during the wait until I can get in). I remarked to the doctor that I think she spent more time with me in one appointment than I've spent with my surgeon in a year. She noted she'd been a general practitioner previously and that one hires a surgeon for their hands, not their manner. I sent a note to the health system praising the doctor. It was tough to go to the appt since it clearly meant getting out of bed and moving, neither of which has been easy recently, but she made it such a good experience. I want to clone her (and get her to take just one patient as a GP...mine is thorough but not nearly as kind).

Thank you, Dr. A.R.K. You made me feel listened to and cared for and the world would be better if there were more doctors like you.

Endo Awareness Month: Mental Impact

I confess...I'm not doing much better.  Ironically, I have another specialist scheduled for today.  I've actually been managing to sleep decently with the help of a the medicine that is supposed to help one deal with the pain, but I still need Ambien or I'm up so kept the Sleep Doc appt. 

Anyway, this week's topic for Endo Awareness Month is the mental impact.  For me, this is all about how chronic pain impacts me (so a LOT of this applies to chronic back pain too).  It is draining.  When you are in pain constantly, you are also tired constantly.  A deep bone tired that isn't about needing sleep but rather about just being out of energy.  I can put on my "people face" when I need to but that takes a LOT from me.  I need a lot of downtime.  I do love going out to dinner on the weekends but if I've had to put on the people face a lot then I often opt for more quiet nights at home.  The pain itself stops me in my tracks and makes me yearn for bed and the weight of the constant pain just adds to that.

The added wrinkle on the mental side comes from the fact that endo is an invisible illness.  I remember being in pain on the train once and practically jumping at an open seat only to hear two women deride me, suggesting they were tired and needed it more.  I'd sometimes make a phone call and mention that I was in pain in the hopes someone would offer me a seat (I was too shy to ask).  I've had people toss out the phrase "well, at least you have your health" and wanted to reach in and squeeze and twist everything below their belly-button and then ask if they wanted to repeat the comment.  I've also had people who doubt and question my pain since I look like a pretty healthy person from the outside.  I want to scream from the rooftops that you can look healthy and still be crying inside from pain.

A final issue on the mental side is guilt.  I have talked before about "ribbon envy"...the jealousy that other diseases get much more attention even though endo impacts so many lives.  I get a bit mad when I see so many pink ribbon fundraisers.  And then I feel guilty.  Of course, I want breast cancer cured.  And I know my illness is not a fatal one.  I feel guilty about the jealousy, but it is honest.  I was once at a winery that sold shirts with a donation to endo and I nearly cried happy tears (they had NO smalls or mediums so I couldn't get one, they weren't sleep-shirt friendly or I'd have bought an XL).

because being bed-ridden entitles me to a whining post

I confess....I am angry.  And exhausted.  And frustrated.

I'm still spending most of the day in bed, where I've been for the better part of two weeks.  If I stay perfectly still, the pain is manageable.  But even moving to use the bathroom shoots it back up.  I'm stubborn and tried to sit with MM for our nightly Daily Show and Colbert Report reruns (they show the prior night's episodes at 6 and 630) the past couple of nights...it feels like I'm sitting on a pole that's going in just above my butt and travelling along my lower spine.  The rest of the time it feels like there's a knife in my back and someone is slowly twisting it.  The pain often hits an 8 on the doc's beloved pain scale (1 to 10).  Staying still can knock it down to a 6 but it is has been so constant that I'm just overwhelmed by it.  It is often so overwhelming that I can't even really watch TV.  FYI -- the ceiling above the bed is boring, the fan's a little more interesting.  This post is being written in 15 minute increments since that's about my attention span.

I'm a bit at a loss of what to do.  I've never been bed-ridden for more than a day or two (that was endo related and I usually knew it was coming).  I've struggled through my errands....including an annual Gyn appointment which is what every woman wants to do when she's already in pain and which always means kicking up the endo pain too.  The doc is giving me medicine that is supposed to help mentally deal with pain but doesn't want to give me more pain meds.  I was so happy to be entirely free of them and part of me wouldn't want to go back to medicines, but that's outweighed by wanting to feel human.

I guess it is good that I don't have a job so don't have to worry about the time off.  I did have to give up my law blog ghostwriting for the past two weeks which makes me feel pathetic.  I covered a small event for Friday's edition of the little freebie paper (page 4 of the 3/9/12 edition if you are dying to know about the Bellefonte Math Family Fun Night).  Luckily I could cover that in only about a ten minute visit.  Tonight I have a bigger event for the paper and I'm nervous.  I was really excited to be asked to cover it since it is a benefit dinner for the Bellefonte Education Foundation.  Now I'm just plain nervous about getting through the event (2-3 hours).

I had the surgery.  I went through the recovery.  I worked hard at PT for four months.  I did the x-rays and they showed my bones were growing.  I did it all.  Yesterday marked seven months.  It wasn't supposed it be like this.  I really thought I was improving and was doing okay as I stepped down my medicines.  I guess I knew it was coming back whenever they wore off but it was very manageable.  Now that the pain is constant, it isn't. 

I have an MRI scheduled for the 19th and am meeting with a pain specialist on the 29th....I need a fast-forward button to get me there.

Two Reviews, Because I'm Tired of Staring at the Ceiling...Started Early, Took My Dog (Atkinson) and The Winter Sea (Kearsley)

I confess....I'm not doing well at all.  My back pain is really bad....like spent the past week and a half in bed bad.  I've never been bed-ridden before, not even the weeks right after surgery.  I haven't been on any pain meds and the pain is overwhelming.  If I stay perfectly still, it's a 6 of 10 but trying to even just go to the bathroom can knock it up to an 8.  The pain is simply winning....at times I can't even focus on stupid daytime TV and I've spent hours just staring at the ceiling.  I had to hand off my ghost writing posts this week which makes me feel really useless.

These were written in pieces but I stubbornly want to get two reviews done.  I've largely read in fifteen minutes snatches recently...that's about my attention span.  Won't be my "deepest" reviews but I feel a need to get them done.  Then I shall go back to examining the ceiling fan.

•  Started Early, Took My Dog by Kate Atkinson

I don't read many detective stories but an online friend introduced me to Atkinson's series of Jackson Brodie books.  They revolve around a private detective with a messy personal life and each one includes several different stories that inevitably meet in some fashion.  Started Early is the latest in the series and includes stories related to a woman seeking the truth about her identity, an old cover-up, an aging actress, and a mysterious young girl that a former cop buys (that's not a euphemism) from a prostitute. 
I enjoyed the book, although I definitely felt some of the storylines dragged a bit.  I like that Atkinson builds interesting, imperfect characters and particularly enjoyed the story of the former cop and the little girl.  I was less interested in the parts about the aging actress...they bored me a bit and I wasn't invested in them.  Still, it was a fun read.  A bit on the mind candy side for me but that's good in the right dose.  3.5 stars, rounded up because it simply did what I expected it to do....it was an enjoyable read and I liked visiting it each night but didn't get or expect anything deeper.

• The Winter Sea by Susanna Kearsley

I've become a big fan of books that have books within them and that's what drew me to this one.  Carrie is an author who focuses on historical fiction and finds she writes best when she is in the setting of her novel.  Her work on a book about a failed attempt by in 1708 Scotland to take back its independence and return the country's own King to the throne.  Her novel is embedded and is largely a romance but has a lot of (heavily researched) history and politics.  Carrie finds her writing often matches historical facts that she hadn't known about and she ponders whether she has "genetic memory" and is recalling events that happened to an ancestor.  She also has her own love story.

This simply wasn't what I'd hoped for when I bought it.  I like what I term "literary mysteries" where the embedded stories help develop a mystery storyline and this just wasn't that sort of book.  It is a historical romance and those have limited appeal for me.  I think people who like sweeping romances with a large dose of history would enjoy this but it only hits three stars for me.  I'd felt a bit bad by how much my own bias was impacting my rating, I do think she does her genre well, but I strongly disliked the way the book (esp the embedded novel) ended so feel firmer in my rating.  Recommended for lovers of historical romance...just stop reading about 40 pages from the end and you'll like it!

Endo Awareness Month: Physical Side

I confess...I'm not really feeling up for writing these days.  Which says a lot.  I've been having intense lower back pain and am really upset by it.  I'd stopped all pain medication and it became immediately clear that my pain was managed but not truly fixed.  I'm waiting on a referral to a pain management doctor and spending much of my day in bed.  I didn't even do that in the immediate post-op period so it says a lot that I'm skipping workouts and spending most of my time lying down.

But that's not what I'm coming to talk about.  As part of Endometriosis Awareness Month, I'm participating in a group effort to educate the blogosphere about the condition.  Each week will have a topic and I'm going to try to post on Mondays.  I apologize that this post is not better written...it deserves more energy than I have to give right now.

This week's topic is the physical impact of endometriosis.  From the time they started, my periods were always very heavy.  At first, there was minimal pain but it seemed to creep upwards each month.  I began to find myself with severe pelvic pain each month but I simply assumed it was "normal" and something I had to live with.  The pain got severe and eventually became all month-long but I still didn't speak up.  And then it got bad enough that I passed out in my office.  I was put in a cab and taken to the doctor.  Endo was suspected from the start and I simply knew it was the culprit but we ran countless other tests first since endo can only be diagnosed via surgery.  I remember coming out of surgery and feeling a mixture of relief and fear when the endo was confirmed.  I wasn't crazy and I had a name (a huge mental comfort), but it was an incurable condition and one I'd be facing for many years to come.

Endo can be managed, but not yet cured.  I've been on continuous birth control for years.  I don't take the week of placebo pills and thus don't get a monthly period.  For a while, I did take the break week once every four months but I'd end up bed-ridden for at least a couple days.  Finally, my doctor said to just abandon it.  I've had three surgeries which have provided some relief in the short-term but it seems determined to come back. The pills do help control things but the pain still breaks through sometimes.  I can't really predict when it'll happen but I usually have pain at least once a week.  If I miss a pill for any reason, I know the pain will follow.  Even when I take the active pills daily, the pain can rise to an eight on a scale of one to ten.  I've described it as a giant hand reaching inside me and squeezing and twisting everything below my belly button.  At times, it gets bad enough that I essentially pass out....sometimes I actually start hoping for that last notch of pain so I can "go away."  It isn't quite fainting and isn't quite sleep, it is just my mind giving in and escaping my body.   

I can't fully explain chronic pain to anyone who hasn't loved with it.  I can put on a "people face" and look normal when I have to but it takes a lot of energy.  Living with the menace of pain is exhausting and hard.  It helps to know I'm not alone and that I have many other women fighting by my side.  We tend to look perfectly normal but we're coping with a lot.  I hope for all of our sake that we can one day find a cure rather than simply managing the symptoms. 

Endo Awareness Month

I confess...I don't really own yellow.  Well, I have an old shirt from college when I worked on a congressional campaign but that's def sleep-only material. 

But March is endometriosis awareness month and March 1 is Wear Yellow Day for Endo Awareness so I will at least share a yellow ribbon here.  As most of my readers know, I deal with this painful condition as a regular part of my life.  It is under-researched and there is no cure, despite it affecting millions of women and causing them severe, chronic pain and often fertility issues (not likely an issue for me). 

I will be posting other posts in the coming weeks talking about my endo journey in an effort to help the blogosphere become more aware of this health issue. 

Hopefully I can make this link to the blog group set up by Jamee play nice:

Book Reviews: The Boiling Season (Hebert) & Boys Keep Being Born (Frank)

I confess...since we've seen that I do more than read, it is clearly time to return to books.

• The Boiling Season by Christopher Hebert

This is another book that was provided to me by the lovely folks at Harper.  They are an unemployed book lover's dream.

The Boiling Season is set in the Caribbean, on an unnamed island that bears much in common with Haiti.  The protagonist is determined from an early age to escape from the run-down slums of his childhood and his shop-keeper father.  He finds his way to a stint of employment with a Senator and then spends most of his life as a caretaker at a lush, secluded resort.  He is determined to ignore his roots and the growing political unrest in his country in favor of the lavish life at the resort and the magical oasis it provides.  His determination to ignore the realities of his land's politics continue even as the world eventually comes knocking at his door. 

I greatly enjoyed this book.  The narrator is well-drawn and beautifully flawed.  The reader is not allowed the solace of his blindness but continues to have some degree of sympathy with his desire to see only a paradise.  Hebert's characters are vivid and well-drawn, many of them more complex than secondary characters are usually permitted to be.  I do think that the novel could benefit from some editing, it did drag in points, but I'm still giving it four stars.  A good read for people who like a bit of political complexity lurking behind the curtains.

• Boys Keep Being Born by Joan Frank

I picked up this collection, along with another book, after immensely enjoying Frank's Make It Stay.  This is a series of short-stories, most focusing on or involving middle-aged women contemplating the meaning and the content of their lives.  I don't tend to love short stories, but many of these pieces overcame my usual objections with beautifully crafted characters and emotional depth.  I particularly loved a piece where a woman is attending the ninth birthday of her long-term boyfriend's son.

In the end, I did struggle a bit and push to get through it because the format just isn't for me.  3.5 stars, rounded up to 4 since I think my rating was tempered by an unfair bias.