Sharing-Sand & Stone

Sand & Stone

Wish I knew the author; I would love to thank them!  What a beautiful sentiment for such trying times.  Sent to my by a dear Uncle…

TWO FRIENDS WERE WALKING
THROUGH THE DESERT.
DURING SOME POINT OF THE
JOURNEY, THEY HAD AN
ARGUMENT; AND ONE FRIEND
SLAPPED THE OTHER ONE
IN THE FACE.

THE ONE WHO GOT SLAPPED
WAS HURT, BUT WITHOUT
SAYING ANYTHING,
WROTE IN THE SAND:

TODAY MY BEST FRIEND
SLAPPED ME IN THE FACE.

THEY KEPT ON WALKING,
UNTIL THEY FOUND AN OASIS,
WHERE THEY DECIDED
TO TAKE A BATH

THE ONE WHO HAD BEEN
SLAPPED GOT STUCK IN THE
MUD!!! AND STARTED DROWNING,
BUT THE FRIEND SAVED HIM.

AFTER HE RECOVERED FROM
THE NEAR DROWNING,
HE WROTE ON A STONE:

‘TODAY MY BEST FRIEND
SAVED MY LIFE ‘.

THE FRIEND WHO HAD SLAPPED
AND SAVED HIS BEST FRIEND
ASKED HIM, ‘AFTER I HURT YOU,
YOU WROTE IN THE SAND AND NOW,
YOU WRITE ON A STONE, WHY?’

THE FRIEND REPLIED
‘WHEN SOMEONE HURTS US
WE SHOULD WRITE IT DOWN
IN SAND, WHERE WINDS OF
FORGIVENESS CAN ERASE IT AWAY.
BUT, WHEN SOMEONE DOES
SOMETHING GOOD FOR US,
WE MUST ENGRAVE IT IN STONE
WHERE NO WIND
CAN EVER ERASE IT.’

Charley-A New Patient’s Story

This month I have a guest!!!   Charley is a newly diagnosed UC patient; unfortunately–at the age of 16–she’s had a crash course.  She is open and brave enough to share her experience in order to educate others.  Thank you Charley for allowing me to share your story!!

Charley’s Story

December 16 th , 2010. This is a date that changed my life This is the day that
I was diagnosed with Ulcerative Colitis, and auto-immune disease of the colon.
This is the day that I understood that everything truly does happen for a
reason, and what doesn’t kill you can make you stronger.

All my life I have had digestive troubles, but during band camp my junior year,
I noticed running and carrying my snare drum, which was something that had never bothered me in the past, sent sharp pains into my lower abdomen. After

google images

numerous doctor visits, I was diagnosed with IBS and was scheduled an appointment with a pediatric gastrologist for December, almost 5 months from my when my first
symptoms showed up.

After my first appointment the doctor gave me an anti-inflammatory medicine to
take 3 times a day until the colonoscopy she had scheduled for the next week at Kosair’s Children Hospital, where I would have my procedure done. After waking
up from the anesthesia, I was informed that the doctor had found about seven
inches of inflammation and ulcers in my colon. This meant that about a third of
my colon was inflamed and was the cause of all my pain. The doctor then put me
on high doses of Prednisone, a steroid used to fight inflammation.

I was on multiple medications for my disease, but nothing seemed to help.

google images

Eventually, in February, my body had taken all it could take. I had gotten to the point to where I was constantly sick and could barely walk due to unbearable pain. After having my steroids increased twice, the doctor sent me to Kosair’s immediately.

My mind was spinning. What seemed like a few months ago, I was fine, and now I was headed to Louisville to be placed under hospital care. My mom was in tears, which scared me because I rarely saw her cry. This is when I knew I was seriously sick.

I spent 5 full days in the hospital, and was diagnosed with C-Difficle, an infection that was making my ulcerative colitis worse. I was put in isolation and given IV fluids, medicines, and countless pills. The doctor even mentioned that if I got much worse, my colon could need to be removed.

google images

After leaving the hospital I was put on over 30 pills a day to treat my colitis, and still receive IV infusions every 8 weeks. The steroids made me gain 25 pounds, become lactose intolerant, made me lose almost all of my hand function, and made my face swell to where I felt unrecognizable. My confidence was at an all time low.

Months later, I am slowly regaining a “normal“ life. I am off steroids and
slowly improving. I can do simple activities that were impossible in the past. Even though I am doing extremely better, every day is a struggle I will have for
the rest of my life. but this struggle has made me determined to be the best I can be as a person. Ulcerative Colitis had highly affected my high school experience, but I will by no means allow it to define who I am.

The Subtle Nuance of Female Speak

NINE WORDS WOMEN USE

DISCLAIMER:  This is not my creation and I cannot (and do not) take credit for the humor that follows. However, I wish I could.  With that being said–I AM  guilty of using the language. This was sent to me by a MALE friend.  I’m glad he’s finally taking lessons!

(1) Fine : This is the word women use to end an argument when they are right and you need to shut up.

(2) Five Minutes: If she is getting dressed, this means a half an hour. Five minutes is only five minutes if you have just been given five more minutes to watch the game before helping around the house.

(3) Nothing: This is the calm before the storm. This means something, and you should be on your toes. Arguments that begin with nothing usually end in fine.
(4) Go Ahead: This is a dare, not permission. Don’t Do It!

(5) Loud Sigh: This is actually a word, but is a non-verbal statement often misunderstood by men. A loud sigh means she thinks you are an idiot and wonders why she is wasting her time standing here and arguing with you about nothing. (Refer back to # 3 for the meaning of nothing.)

(6) That’s Okay: This is one of the most dangerous statements a women can make to a man. That’s okay means she wants to think long and hard before deciding how and when you will pay for your mistake.

(7) Thanks: A woman is thanking you, do not question, or faint. Just say you’re welcome. (I want to add in a clause here – This is true, unless she says ‘Thanks a lot’ – that is PURE sarcasm and she is not thanking you at all. DO NOT say ‘you’re welcome’ . that will bring on a ‘whatever’).

(8) Whatever: Is a woman’s way of saying *&^%$ YOU!

(9) Don’t worry about it, I got it: Another dangerous statement, meaning this is something that a woman has told a man to do several times, but is now doing it herself. This will later result in a man asking ‘What’s wrong?’ For the woman’s response refer to # 3.

Print and hang on the refrigerator so your fellow will ALWAYS have a reference tool!

On Track-mini update

I just climbed up off the floor from doing my few minutes of stretching.  My back & hips thank me for it daily and it’s such a small time investment.  I can’t believe I hadn’t done this sooner!!  I’m almost embarrassed….  Now I’m wondering what other mini-interventions I can discover that will have a major impact….  Maybe chronics have more choices than we originally thought…

Pain Management, Communicating with your MD & Public Perception

Chronic illnesses can cause chronic pain, and pain management is shrouded with problems.  Thus, the true pain patient has an unnecessary struggle for treatment.  Sad but true–it’s getting worse–and the pain medication tide is turning sour because the level of abuse is beyond comprehension.  Sadly, it’s true.

As patients, it is our job to be responsible, prepared, educated and cooperative–even when it sucks to do so.  Patients have to  educate themselves and jump through the necessary hoops–NOT to prove they aren’t addicts but to show the physician A. The patient is doing his/her part toward maintaining health & not looking for a cure in a pill -AND/OR  B.  He/she is sincere in the quest for pain management.  The problem with this is PATIENTS & DR’s SPEAK DIFFERENT LANGUAGES!! 

I am a chronic pain patient working in the areas of acute care, mental health and substance abuse–so I see the communication process fail every day, from all sides.  My goal is to close the gap a little and improve outcomes for pain management.  The more prepared a patient becomes, the easier it becomes for the MD to properly treat him or her & weed out the frauds.  Many times the doctor has a reason for the things they do and the patient simply doesn’t understand.  I’m not condoning bad treatment; my goal is to help patients understand there is a process in place that even good doctors have to somewhat adhere to, especially in treating new pain patients.  PLUS, it is critical to be open and honest.  We’ve gotta tell the bad with the good!

First, understand that there are different types of pain & they each respond better to different types of medications.  Learn about the different types of pain such as somatic, visceral, nociceptive and others.  Check out this EMedicine site for more information.

Next, learn to describe your pain effectively.  When, where, for how long, is it constant or intermittent,  what were you doing when it started, does anything help it or make it worse, what does it feel like-stabbing, sharp, aching, cramping??  Be objective and thorough; keep in mind-pain is a symptom and ALL physicians are required to find the source of the pain & try to fix it.  The Pain Resource Center has some great information. It is irresponsible to hand over a narcotic prescription without exploring for the source.  Period. Even if the exploration process hurts.

Also, keep track of what you take and when.  Keep an updated medication list in your purse or wallet ALL of the time. Keep track of when & why you take your pain medication. Document whether it helped or not and when you started having pain again.  It’s simple to do, just carry a pocket calendar or little notebook.    It is  our responsibility to do our part and keep track of our progress.  This is especially critical in determining a maintenance doses and in the titration process.  If the patient is unable to track it for cognitive reasons, a trust-worthy person has to step up and help.

And….No matter how much it sucks, the patient needs to go through the process of trial and error.  The physician is required to start with the treatment having the LEAST RISK.  What does that mean??  Tylenol, ibuprofen, heat/cold, stretching,topical agents, especially if you are new to the MD–Americans often scoff at and ignore these things.  If you want to be taken seriously, you’ve gotta do it.  Once again, it’s part of being a responsible patient.  Keep track of these treatments and keep in mind–refusing to try the lesser options is grounds for the MD to dismiss the patient.  The doctor is saying “You won’t cooperate then I won’t treat you.”  That is the correct thing for the Dr to do.  Sorry.

Another thing:  Remain open to the concept of adjuvant agents for pain management.  Proper use of these medications allow the MD to prescribe lower doses of narcotics–which is the BEST thing for us as patients.  Do not interpret these steps as “being blown off” or “not being taken  seriously”.  Certain antidepressants are very helpful as tools against pain, so don’t assume the doctor gave you an antidepressant because he/she thinks “it’s all in your head”; that is not the case.  It is actually the opposite.  Follow this link for more information about adjuvant agents! This list is older and doesn’t include medications such as Lyrica, Cymbalta or Savella, but it’s short, clear & concise.  For information on the newer medications it’s best to google them separately to get the skinny on each one.

Other tips:

*Do not doctor-hop, doctor shop or get pain medications/controlled medications from more than one doctor.  This is a red flag; there is a difference between being poorly treated and not getting the treatment you want. Think long and hard before moving on.

NOTE: Most states have linked systems in place to see what your last controlled medication purchase was–who prescribed it, how much,when & where–so don’t lie.  You’d be amazed at how much the MD’s know about us when they walk into the room….

*Do not refuse the Tylenol, ibuprofen, toradol, inapsine  they offer initially.  The MD is working through the continuum of care–it is the appropriate thing to do–so cooperate.

*Do be responsible with your medications & keep them locked up at home.  If you lose them or they get stolen, be prepared to suck it up and do without.  If you have family members stealing your medications, REPORT THEM & LOCK THEM UP.  I did it-you can too if you love them.

*Do not come into the MD’s office with an idea half-researched and refuse to consider other options.  70% of the patients I see have only investigated the favorable aspects of their desired treatment and refuse to acknowledge the inherent risks.

*RE-EXAMINE your list of allergies and make sure they are true allergies.  I see multiple patients a week reporting “allergies” to all non-narcotic pain medications.  Funny that they are allergic to acetaminophen by itself but NOT in hydrocodone/apap.  (apap is acetaminophen). Patients (unfortunately)will not be taken seriously if the  “allergic reaction” is “It upsets my stomach, it makes my mouth dry, it gives me a headache, it gives me restless legs” or other similar mundane symptoms.  Those aren’t allergic reactions and it is perceived as drug-seeking.

I’m hoping my post offers some insight into the “other side” of pain management and helps patients understand the situation from another perspective.  The whole process is endless, especially when we’re sick or in pain–but it truly is the only process we have..

Successful-esque

Since my last post I’ve sucked it up and started doing what I’m supposed to.  Barely.  I committed to ten minutes of stretching on most days.   Putting it in print makes it seem really small and pathetic and it also means I’m admitting to having done even LESS than that for a significant period of time…..  However, now that it’s busted out and on the table, it’s not so bad.

google images

Seriously, you guys knowing about it helps keep me accountable.  The thought of having to log in here and blog about failing leaves a bad taste in my mouth, so I’m opting to NOT have to go there.

So far, I don’t have much of a “schedule” or process in place; I’m getting a feel for what works. Right now, mid-morning, after the stiffness starts to wear off, works best so that’s when I’ll probably keep doing them. The important thing is to NOT get all wrapped around the axle about what & how.  The main thing is to move, slowly,purposefully and smoothly, for ten minutes.  I start at my head and work my way down.  Usually I’ll sit on the floor and finish my stretches there.  The devil is in the details, so don’t fall into that trap!

You know what the best part is??  My pathetic little bit of effort is WORKING!  SERIOUSLY!!  Apparently was Rheumy was on-track when he gave me the explanation about edema impinging on nerve fibers….  The numbness and tingling have decreased by 50% and the urinary retention is gone.  I’m at a do-able level now!!  This convinces me even more that I do have some control over how my health progresses & I can make a difference without another pill or surgery.

google images

Maybe things are gonna improve a little!  It’s kind of a double edged lesson:  YAY, I can make a difference by doing something simple!! ~AND~ Damn, now I have to add something else to the to-do list…..Yes, I get it. 

googleimages