The Pain Chronicles: Take 1

One of the goals of my blog is to create an outlet for me to share what I experience with EDS with the people who care about me.  

I've mentioned before that Melanie Thernstrom's 2010 book, The Pain Chronicles was a wonderfully uplifting and informative book.  I thought it would be interesting to share some of the parts of it that spoke to me and what it meant to me.

Here are a few quotes from the beginning of the book. 

(page 5)
To be in physical pain is to find yourself in a different real--a state of being unlike any other, a magic mountain as far removed from the unfamiliar world as a dreamscape.  Usually, pain subsides; one walks from it as from a nightmare, trying to forget it as quickly as possible.  But what of pain that persists?  The longer it endures, the more excruciating the exile becomes.  Will you ever go home? you begin to wonder, home to your normal body, thoughts, life?  

I know this feeling all too well.  Sometimes I feel like the pain has consumed my life.  It can make me feel like I would rather be alone than to have to somehow explain the pain to someone else or experience it in their presence.  When I feel like it's been a while since I've felt like myself, I start to wonder when my life will possibly become familiar again.  I do maintain though, that no matter whether the good days out weigh the bad or the other way around, that the not-so-painful days are my familiar days.  I hope I never get to the point that the painful days are what feel normal.
                                                                         
This may seem dreary, but it's comforting to know that these feelings are a normal part of this process.

(page 6)
In one survey, most chronic pain patients said that their pain was "a normal part of their medical condition and something with which they must live."  One-third of the patients said that their pain's severity was "sometimes so bad [they] want to die."  Almost one-half said they would spend all they have on treatment if they could be assured it would banish their pain.

Again, it's nice to see numbers like one-third and one-half.  Feels less lonely or like "exile."  It's been a tough pill to swallow that, in my twenties, I cut down my hours at work and started letting someone else clean my house.  This is my equivalent of throwing all my money at treatment-since less physical work means better quality life.  

There was a lot of self-worth wrapped up in doing things for myself.  That's something I have come to realize that I just need to do in order to feel better.  What good is working all the time if I feel like half of a person when I'm struggling through the work-day and less of a person than that when I finally make it home in the evening.  It is getting easier to accept this feat.  It certainly helps that there is a notable difference in the way I feel. 

I look forward to more posts from this book.  I think she did a great job of blending enough personal information, like the above quotes, with scientific information- which will be coming soon.

Avoiding Medication Errors At Your Local Retail Pharmacy

I want to share a story with you in the hopes that the same thing does not happen to you. 


I used to take a medicine that is a mild pain reliever and it worked so well for me.  With EDS, pain is a constant battle and anything that works is a blessing.  


About a year and a half ago, I began having miserable side effects to my medicine.  I had been taking it for 2 years prior to that without any complaint  even of expected and common adverse effects associated with it.  One day I took my usual 2 or 3 pills (well within the normal dosing limits) and my sinuses closed and I became extremely drowsy.  It was on the same day as a dear friend's wedding and happened to be when my boyfriend had family staying with us for the wedding.  I was so miserable that day.  I recall driving and thinking that something had gone awfully wrong because I could not keep my eyelids open.  I feared the fatigue associated with EDS and my demanding work schedule, combined with stress had gotten the best of me.  I took my medicine again the next day and the same thing happened.  I didn't yet associate anything with the medication, thinking only that I had overextended myself.  It may sound odd that I made no connection at that point, but I did take it because I was having pain and I thought perhaps my own pain and fatigue were just worsening.  I can remember thinking how awfully I felt and looked and that I hated that other people saw me in that situation.


I did, after a few doses, make the connection to the medication.  Since it is possible that the medication can cause dizziness and drowsiness, I decided it must just be from the med even though I had not had these symptoms before.


Recently, a year after discontinuing the medication, I cleaned out the medicine cabinet as part of my pre-move house cleaning.  I came across my medicine and thought, 'Why do I still have this?  There's no way I can take this anymore.'  Since it used to work so well, prior to any of this, I decided to look up the med by the markings to see if there had been any issues reported with that particular med and manufacturer.


The medication turned out to be a completely different med- TRAZODONE.  -Which is definitely not what was prescribed to me.  Trazodone is an anti-depressant that is sometimes used as a sleep aide.  One can imagine the consequences that could have occurred from taking a few of them and getting behind the wheel of a car.  


How does this kind of mistake happen?


Well, pharmacies do make mistakes.  They do have a rate of error that is to be expected.  With baby-boomers getting older and taking more medications, the retail pharmacy industry is growing.  If there is an expected and unavoidable rate of medication errors that will occur, errors will happen to same part of the population.  The key is to catch the errors before any adverse events happen.


How do we as consumers avoid medication errors happening to us?

• If your prescription is new for you, open the bottle at the pharmacy and have the pharmacist check it before you leave.  If you have had it filled before, check it against the old bottle for the dose and instructions and check the pills against each other to make sure they have the same markings and appearance.  Some pharmacies will put a written notification on the bottle or the materials given to you to notify you when the markings or appearance have changed, but not all of them do.
• If you can wait, fill your prescription after the first week of the month.  Why?  Social security checks go out on the first of the month.  Many people have to wait for these checks to come in to fill their prescriptions.  With the surge of business, errors increase during this time.
• Don't be in a rush at the pharmacy.  Checking the pills will ensure against human error and errors that may occur outside of the pharmacy like the Opana pills that were found in bottles of Excedrin.

In my case, the name and appearance of the pills were similar.  The only way to tell was, of course, the crazy side effects and the markings.

I have since been able to get back on the right medication and gain some pain relief.  Things are getting back on track, but I did suffer unnecessary setback for the year that I went off of it.  

It is essential to understand that the medical field itself and the people who carry out services to us are fallible.  Often times we would like to place blame when the focus ought to be on how to avoid and anticipate mistakes that most certainly will occur.  

Awareness Month

It's May 31st and another awareness month has come to an end.


I know my blog has been MIA for a while, but I hope that with the start of my blog, my friends and family have learned something new about EDS.


Mostly this is just a cathartic way of sharing my story and organizing my thoughts on EDS, but I am always here to answer questions/ interests about EDS.


Hopefully when things settle down after moving and switching jobs I will have more to share.  For now, the conversion of paper charting to EMR at my current job has me pretty swamped and exhausted from head to toe.

PT continued...

Still working on PT.  Yesterday I had the PT assistant working with me.  I have a cold or something and I really didn't feel like explaining EDS to her.  I also think that's the PT's job.  I scared her when I was doing an exercise with my back against the wall.  I didn't like the way my shoulder was articulating, so I pressed my shoulder blade against the wall until I felt my scapula snap, pretty hard, back into place.  She said, "Did you just pop your shoulder back in place?"  She seemed really startled and said she had never seen that before.  Oops. Maybe I should have warned her.  I forget that other people can be squeamish about that stuff.

Crushed Another Run

Well, crushed my second attempt at a run this year.  It's a good start.  I actually found my second wind this time.  You know, that moment in your run that you stop feeling like it's too hard and you think you could keep going for a while.  I still stopped at 1.55 miles though.  My asthma was kicking me in the chest the whole time.  I can't wait for it to get hot outside, so that isn't such an issue.  Fingers crossed for no dislocated ribs this time.  


I used to get at least 3-4 good distance runs in every week.  Once I quit doing it consistently (during recovery from shoulder surgeries), I started with the dislocated ribs after runs.  Hopefully if I can learn to be patient with myself and stick to the slow runs, I can build up to a good 5 mile run.  What a release those long runs used to be.  I'd love to have that end-of-the-run feeling again.

Back to the Grind

Still haven't been back to PT since vacation.  Finally taking a few days off work to get back in the game.  Lately I have been researching dysautonomia.  It's been rough the few warm days we've had so far.  Not sure how I'm going to make it this Summer.  It seems like the cause is up for speculation as well as the method of treatment.  This is rather discouraging to me.  I'd rather put it off than start a new med based on speculation.  Looks like I'm going to have to be a little more open minded if I want to be more comfortable this Summer.

How does EDS feel to me?

This is difficult for me to write.  I don't see myself regularly as a line-up of symptoms.  It's never as bad as the list might seem since I don't experience the whole list at once.  In general, I think I do pretty well.  Most of the time, I make it through my work day without any serious issue.  Some days, I get in a good workout.  Many of these things don't even bother me much because I don't remember life without this.




EDS is...


Reaching to grab something and my fingers bend backwards, refusing to hold it.


Suddenly dropping something that I thought I had a good hold on.  Note that many of my dishes are cracked.  -Just yesterday, I was washing out my pyrex dish at work and, in front of all of everyone in the break room, I dropped it (forcefully) and full of water.  Dirty water went everywhere!  Doing dishes is the worst!  That happens every time.


Neck pain that encompasses my entire head, jaw, eyes and shoulders.  I have no words to describe the pain that makes me throw up repeatedly for hours.  It's the worst thing I have ever experienced.


Muscle spasms that feel like rocks to the touch and twitch like a TENS unit.  I have a few that never release, no matter how much muscle relaxant I take.


Shoulders that dislocate several times a day.  It's always surprising when I sneeze and basically jerk them out of the socket while trying to cover my mouth.  As if a sneeze wasn't surprise enough.


Collar bones that snap into place first thing in the morning when I roll over to turn off my alarm.


Ankles that seem to separate when my feet leave the ground while I jog or run.  This sends a searing pain through them.  I still ponder running a marathon one day.  Maybe... Probably not :) that's crazy.


My low back and hips are so loose, I'm not even sure how to comment on them.  It's been an ongoing task to keep it at bey for the last 11 years, so I don't think I could do it justice in a few words.


Elbows that need to be yanked back into place when they get stuck in a bad position.


Dizziness.


Fatigue.


So, in case you didn't know much about EDS or how it affects me, this is some of what it is to me.

What have I learned from EDS?

I have learned...


... to give people a chance.  For instance, when someone is crabby, short tempered, quiet, or anything else that could be off-putting, I find myself thinking that I shouldn't really judge.  I don't know what brought them to that point today.  Overall, I am much more gentle with people than I used to be.


... to live today.  If it is a bad day, I will make it through and hope for a better day tomorrow.  If it is a good day, cherish it.


... that certain things one might not have thought are a privilege.  Being able to work, working out, going out and being among friends.  These are all things for which to be thankful.


I'm still working on trying to do what I can and not push myself for reasons that are not as important as I think.


These are the major lessons for now, but I'm sure if I gave it some time, there are plenty more to add.

What is EDS to me?

Feeling like others think you are a flake because suddenly 'you have to go' or 'you aren't yourself today' and 'you just aren't up to going out tonight.'


Wishing everyone could see and understand what was going on with me, while at the same time wishing nobody could see.


Working hard to make sure I am supporting myself, but not sacrificing my body by overextending myself.


Being sad or angry every time I have to cut my hours at work or change my schedule because I simply can't manage it anymore.


Giving up on one thing at a time and telling myself that it is not a big deal- just one more little thing I can't do.


Working to accept that my body has limits.

A Simple Thought...

It's tough to be a zebra in a pack of horses.  Especially when I feel I am the only one who sees my stripes.

Travel

Arrived home a few days ago from a Caribbean cruise.  The cruise was amazing!  4 excursions over one week.  Glad to be back though.


Does anyone else feel like travel is incredibly overwhelming?


I had my own pillow, but the bed was less than adequate.  I feel like a hard bed just pushes against every joint in my body and causes everything to dislocate/sublux.  It's a nice surprise to wake up and at every movement feel something pop.  I describe my shoulders and clavicles popping back in like, "being punched in the shoulder from the inside."  I always worry beforehand about those kind of accommodations.  All-in-all, I think it went well.  By the 3rd excursion day, we nixed the kayaking and snorkeling for a day of lounging at the beach and I got a massage by one of the locals.  We did the same thing the 4th day, although I probably should have resisted flinging myself onto and inflatable and racing to the top.


Today, I'm topping off my vacation with a raging sinus infection and I can't tell if the dizziness is from the sinuses, my neck, the baseline dizziness that I've always had worsening or the ship.  Let's call it the ship for now and not worry!


Lots of rest before back to work this week and then, next week, back to my usual PT and workouts.

The Pain Chronicles by Melanie Thernstrom

Has anyone else read the book The Pain Chronicles by Melanie Thernstrom?  I found it to be informative, objective and uplifting.  I would recommend it to any EDSer out there!


The Pain Chronicles

ZUMBA!!!

Long story short, the trip back home was a mess.  Long car ride by myself really made for a lot of knots in my neck and shoulders.  Back home now.  Rest, cleaning, PT -mostly massage and TENS and I'm back in the game.  Today I was brave enough to try some Zumba videos on YouTube.  I can't do all of the moves like they do- no throwing my arms up like I just don't care, but it was fun.  I'll look as silly as I want to in my living room.


Here are the videos I did:

Aprons for Zebras

I really like to sew and my mom recently asked for an apron that doesn't tie at the waist.  Neck pain- blah.  So, I crossed the straps at the back and tied them at the waist.  Here is the result.

I would love to sew and sell more things to make life easier. Please let me know if you would be interested in an apron or if you have any other ideas for stuff you need an altered version of.

Massage and EDS

I need a massage!  I heard an ad on the radio for a school of massage having cheap cheap massages.  I know everyone has to start somewhere and I needed ppl to practice on while I was in nursing school, so could it hurt?  If I just did a swedish massage and no deep tissue, would it matter?

PT day 2 (e-stim vs ultrasound)

I'm feeling better today!  Woo hoo!


I tried ultra sound today and I didn't really notice much of a difference.  I used to love it.  Maybe I should have asked her to do it longer or just stuck with the e-stim.

PT day 1

I found a great physical therapist.  Well, at least, she seems knowledgeable.  Day 1 started with a few exercises that I have done before.  I tried electrical stimulation and it went far better than my last (traumatic) experience with it.


Went home and while lying in bed at night, my right shoulder fell out of the socket.  I had to put it back.  Subsequently, I was sore for 3 days.


Not sure if I overdid it because it was the first good day I had in a while or if it was the exercises.  Probably a combo.


How do you all feel about e-stim?  Is it better than ultrasound?