RANT: HELP YOURSELF!

A health related rant coming on.  Don't read it if you're not interested in health and/or rants!

I find it absolutely amazing how many people go to a doctor and just expect him/her to come up with all the answers in a ten minute meeting.  I'm not sure how you can expect someone to figure out what's wrong with you in such a short period of time.  No doctor can do this unless you've got a broken bone sticking out of your skin.

You have to help yourself to get the medical care you deserve.  You have to do WORK.  You can't rely on someone to know all of your complaints, medical history and family history without laying it out for whomever you are seeing to get a diagnosis or follow up for a disease.

You might argue that if you give a doctor too much information, he/she will think you are a hypochondriac.  If you are NOT a hypochondriac and the doctor thinks you are, you have several options:

• You can walk out of the office right then and there.  This doctor is not the doctor for you.
• You can fire the doctor after the appointment.
• You can file a complaint with the doctor's office and the State Medical Board.

There is no reason for a doctor to dismiss you or treat you as a hypochondriac because you are acting like you want to get well.

Homework before an appointment.  Get a binder and compile the following information.

• I can't stress enough that making a clear comprehensive list of your symptoms in a logical order (top down or body system) will help your doctor.  Date this list and keep a copy.  Make a copy for your doctor.  Stay away from mental symptoms specifically if you're female.  Depression is a catchall.
• Personal heath history, list diagnoses that you already have, head injuries, body parts that have been removed.  Date it, copy it, put one copy in your binder give the doctor the other copy.
• List all medicines and supplements you take.  Note the times you take them and doses.  Date it, copy it, put one copy in your binder give the doctor the other copy.
• Family history of causes of death and diseases.  Date it, copy it, put one copy in your binder give the doctor the other copy.
• Most important page:
• Make a list of the three most important questions for your doctor.  Leave plenty of space to fill in the answers. 
• List the meds for which you need refills.  
• Name of med
• Dose
• How taken
• How many day supply
• List the tests you would like to have run and the CPT code if they are unusual tests.  It might be helpful to list why you want them as well.  Some of us get a little nervous and can't remember things when push come to shove.  Know if the tests (like renin and electrolytes) need to be done fasting so they don't just heard you into the lab.  As a general rule, I like to have all of my tests run at 8 am, fasting so I am ALWAYS limiting as many variables as possible and trying to get the most accurate test results that I can get.
• Date it, copy it, put one copy in your binder give the doctor the other copy.
• Get copies of all of your medical records and labs as far back as you can.  If you reside in the US, you are legally entitled to all of your medical records.  If you are refused your medical records, you need to file a HIPAA Complaint.  I keep mine in a binder arranged by year.  Bring the binder to your appointment!  All the doctors that I think are great have appreciated the binder.  All the most horrible doctors have attempted to put me down because of it.  
• Have your copies of your papers in your binder.
• Leave the doctor's copies loose.  If you have an advocate with you, allow the advocate to handle the distribution of the paperwork to the doctor AND take notes for you.  You take notes as well.

During the appointment, breathe deeply and relax.

• Allow the doctor to enter the room and make whatever small talk needs to be made.
• When the doctor asks about your symptoms, hand over the Symptoms page.  When the doctor asks about your meds, hand the Med List over.  History, do the same.
• When he or she asks if you have any questions, hand over the "Most important page".  You deserve to have all three of those questions answered if they haven't been.  Go get 'em tiger!

A friend to all Addisonian's over the years, Dick Loeppky

I apologize for not posting this sooner.  

Our friend and fellow Addisonian passed away from a combination of atypical Parkinson's and some Addison's complications (I have no details).  Dick was known on Addison's forums for being supportive, generous, explaining scientific things in simple terms and for being kind.  He was loved by many and will be missed.  I feel very fortunate to have met him in person when he passed through Teton Valley in 2004.  We had dinner, drinks and some laughs.  Dick played a big role in my diagnosis in 2001.  

Richard Loeppky, 1937-2012

Sunday, April 29, 2012

Richard Norman Loeppky passed away on Saturday, April 21, 2012. He was cherished by his family and friends and appreciated by his colleagues and students.

Loeppky

Richard was born in Lewiston, Idaho, on Aug. 2, 1937, to Norman and Helen Loeppky. He received his Bachelor of Science in chemistry from the University of Idaho and his Ph.D. in organic chemistry from the University of Michigan. After finishing his post-graduate work at the University of Illinois, he spent his entire academic career as a researcher and organic chemistry instructor at the University of Missouri.

A very generous man, he dedicated most of his life to cancer research. His work led to several discoveries that identified cancer-causing chemicals in retail products.

For his excellence in cancer research he received international recognition, the Founders Award for Outstanding Scientific Achievement from the American Chemical Society and was inducted into the University of Idaho's Alumni Hall of Fame and College of Science Academy of Distinguished Alumni. Recently, he worked with the European Union on the construction and revision of regulations related to cancer-causing chemicals.

He also had a passion for teaching the next generation of scientists and received the Purple Chalk Teaching Award, which acknowledges teaching excellence of select faculty members, from the College of Arts and Science Student Council. This was the award of which he was most proud.

He loved to travel the world, meet new people and take photographs of his surroundings. He had a very inquiring mind and was a gifted individual in so many ways.

Richard is survived by his daughter, Ann Loeppky-Finn (Robert); son, Greg Loeppky (Nicole); granddaughters, Keira Finn and Emma Loeppky; sister, Marilyn French (Carter); niece, Katie (Joel) Yates; and nephew, Ryan French.

He was truly loved and will be deeply missed. A memorial service will be held at 1 p.m. Saturday, May 5, at Central Lutheran Church in Everett, Wash. In lieu of flowers, please donate to the charity of your choice.

This article was published on page A11 of the Sunday, April 29, 2012 edition of The Columbia Daily Tribune.Click here to Subscribe.

Disappointment and recovery

It's been over six months since surgery.  Recovery, mental and physical, has been painfully slow.  I'm not exactly the type of person that expects quick results or miracle cures.  I worked for nearly five years to accomplish my first 100 mile race.  I set goals every year and plan how I can accomplish them.  I have approached this shoulder no differently.  Slow, incremental changes and daily practice.  The son of a bitch (my shoulder) can lift my hand to wash my hair, I can sleep without pain, and I can put a coffee cup into the cabinet although I am not graceful at it.  I have to think about nearly every movement of my arm over shoulder height.  I have to cheer on the shoulder like it's a three year old child.  WTF?!  I hurt it doing kips, pull-ups and push-ups (on top of 20 years of abuse) and now it needs to be tended to like a child.  This is a very disappointing feeling.

I am grateful that I can lift my arm.  I am grateful that I can reach up to the bar for the Gravitron at the gym.  I sure wish I could adjust my ponytail on the fly but I can't.  I'm SO GLAD I can wash my hair two handed and with regularity.

I think the hardest thing to accept with this whole recovery is that I failed at the Addison's aspect of it.  Trust me, I have learned from my failure but it's hard to accept that I think I know so much and can't even manage myself properly.  Without proper management of Addison's, brain fog sets in, pain is greater than it ought to be and there's a lot of crying.  I did great with surgery and immediately post surgery.  In the days that followed, it was hard to determine how I was "supposed to" feel.  I have only had surgery a few times and never since Addison's.  I didn't know what was normal.I didn't take enough HC.

What I felt mentally and physically was NOT NORMAL.  I thought I was taking enough hydrocortisone (hell, I was taking much more than suggested but I was freaking symptomatic-no appetite, weight loss, brain fog from hell, inability to think straight, crying about freaking nothing and watching Jerry Springer) but I clearly was not.  I was unable see all of the symptoms.  A couple of people kindly suggested I take extra HC (Thank you C :) ) but I didn't feel it was necessary.  In retrospect, I should have doubled my HC intake even though it would have caused a heart attack if most doctors knew how much I would have taken.  It's entirely possible that I might have only needed crazy high amounts of HC for a few days or a week before I leveled out to an "acceptable" amount of HC but I never gave myself the opportunity to know.

The result of not taking enough HC was devastating to me mentally and emotionally.  I was unable to handle much of anything.  It didn't help that I was kicked off the Parrot Outreach board two weeks after surgery and we moved cross state three weeks after surgery.  With my arm strapped down for six weeks, I was basically unable to do anything that was a coping skill for me (cleaning, running). I'm a person who needs my space and for three MONTHS, I slept on the living room couch.  I wasn't taking enough HC.  I was a fucking mess.  It's been a slow recovery from the mental damage that I did to myself.  I got so far behind in life that I felt I would never get back to it being normal again.

The first thing to come back were my legs.  I was able to run and walk which also meant I was able to get out and explore and get dirty so I could cry about taking a shower.  Taking a shower was way harder than adventuring.  I was able to run a couple of races so I was able to socialize again.  Unfortunately, my brain took a long time to recover.  It got better slowly but until after Christmas (surgery was early August) I was unable to think very clearly and I was unable to accomplish things, even basic tasks.  Christmas was a disaster.  I was unprepared and didn't give a shit except I did want presents!

In the last six weeks, I've accomplished more than I have in the last six months combined.  I am thankful for that.  It's nice to know that I don't have a drawer full of lists to sort and complete.  I have revised my website and started my business Addison's Support Advocacy, LLC.  The house is clean, the animals are tended to and I'm ready to start plowing through my 2015 goals.