Finding the team

Another great article from Kelly 🙂

Zebraontheside

Finding good doctors is so frustrating. The one that is good for one person, may not be good for another person. I have also found that sometimes a friend will rave about their doctor and then I find out later that they had serious problems that their doctor was ignoring. I have also found that some of my best doctors were “the worst doctor” someone else has ever seen. There have been times that I have asked for a referral from a doctor only to find that it was not a good choice at all. There are so many things that come into play here.

One of the things that I have found to be the best approach for me is when I look at what my needs are and then try to figure out which doctor has the best approach for that problem. This requires a lot of work…

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Rally for Medical Research Hill Day

Held every September, this Capitol Hill Day event continues the momentum established in 2013, and includes nearly 300 national organizations coming together in support of the Rally for Medical Research.

The purpose of the Rally is to call on our nation’s policymakers to make funding for National Institutes of Health (NIH) a national priority and raise awareness about the importance of continued investment in medical research that leads to MORE PROGRESS, MORE HOPE and MORE LIVES SAVED.

The next Rally for Medical Research Hill Day is Sept. 22, 2016.

Sign up to receive updates, including a link to register once it becomes available.

It is more than amount

Taking hydrocortisone – seems like a lifelong thing for so many of us! I’ve been taking it for over 20 years, every day.

Zebraontheside

I have been taking hydrocortisone for almost a year now and I have to do a 24 hour urine free cortisol. This is old hat *boom boom chick* for me. I went to the lab yesterday to pick up the jugs. Yes, you heard right – JUGS. Plural. I did these all of the time when I was testing for Cushing’s and after. I usually try to restrict how much I drink but I am really uncomfortable on tests that I get it all in 1 jug. I really need 2 and could easily have done 3 before. The technician was shocked when I asked for multiple jugs and told me that I could just bring it in something else because she really only needs to know the volume and can take the aliquot out of the one jug with acid in it.

*thoughts about the other times that I…

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Nominations Now Open for RareVoice Awards

rare-voice

Rare Disease Legislative Advocates is pleased to open nominations for the 5th Annual RareVoice Awards, a celebration to honor advocates who give rare disease patients a voice on Capitol Hill and in state government.

Wednesday, November 16, 2016
Arena Stage in Washington, DC

If you know of someone who has been a “Voice” for the rare disease community and should be honored for their work, please click here to submit your nomination.

RareVoice Award nominations are open to the public.  We encourage the community to nominate individuals and organizations who have gone above and beyond to become rare disease policy leaders and political advocates in their state and our nation. We have nominations open for the following categories: Congressional Staff, Patient Advocate or Patient Organization (at the state or federal level), and Government Agency Staff.

Deadline to submit nominations is July 31, 2016.

Pituitary Patient Support Group Meeting

pituitary-meeting

Pituitary Patient Support Group Meeting, Saturday May 28, 2016.

Neuro Endocrine expert Dr. Pejman Cohan will be speaking. “From Diagnosis to Treatments”

There will be time for Q&A and lunch served after the meeting.

Meeting 10:30am-11:45am Lunch 11:45am-1:00pm

Location: John Wayne Cancer Institute- 2nd floor conference room, 2200 Santa Monica Blvd. Santa Monica, CA 90404

Free parking with validation, behind building in the JWCI parking lot.

Please RSVP to Sharmyn at pituitarybuddy@hotmail.com

Download flyer here.

RDLA’s May Legislative In-Person Meeting

RDLA Congressional Caucus

Rare Disease Legislative Advocates in coordination with Rare Disease Congressional Caucus Co-Chairs: Representative Leonard Lance (R-NJ), Representative Joe Crowley (D-NY), Senator Orrin Hatch (R-UT), and Senator Amy Klobuchar (D-MN); and the Office of Senator Mark Kirk (R-IL) will host a briefing on:

 The NIH and FDA: Vital Agencies in the Fight Against Rare Diseases

Wednesday, May 18th, 2016

2:00 pm – 3:00 pm

Senate Capitol Visitors Center Room 201, Washington, D.C., 20004

   REGISTER   

Moderator:  Ellie Dehoney, Vice President of Policy and Advocacy, Research!America

  • The Undiagnosed Disease Program at the NIH
    • William Gahl, M.D., Ph.D, Clinical Director, National Human Genome Research Institute (invited)
  • Precision Medicine – The White House & the NIH
    • Matthew Might, Strategist, Executive Office of the President, The White House, Associate Professor, University of Utah, Associate Professor, Visiting, Harvard Medical School, Founder, NGLY1.org (invited)
  • The Value of Patients to Clinical Innovation at the NIH
    • Kayla Martinez & Dorelia Rivera, NOMID Patient
  • The Role of NIH Funding in Kickstarting Biomedical Innovation
    • Christopher C. Gibson, Ph.D, Co-Founder & CEO, Recursion Pharmaceuticals

Come and enjoy an array of refreshments  or have coffee and snack break while learning about the role of our health agencies.

The MAGIC Foundation’s Annual Adult Convention

Lots of Cushies go to this meeting. Dr. Theodore Friedman (Dr. F) will be one of the speakers.

The MAGIC Foundation’s Annual Adult Convention

July 21 – 24, 2016

Program

Download the 2016 Convention Program by Clicking Here.

Location

The Westin Lombard Yorktown Center
70 Yorktown Center
Lombard, IL 60148
(630) 719-8000

Hotel Room Rates and Reservations

$104 per night ($115.44 with tax) All rooms have refrigerators!! A limited number of roll-a-ways and cribs are available at no cost so if you need one be sure to request one when making your hotel reservation. To make hotel reservations call the Westin at 888-627-9031, and mention The MAGIC Foundation guest room block, or book online at:https://www.starwoodmeeting.com/events/start.action?id=1602112093&key=3A0B99EE

Airline Transportation

Please contact your local travel agent or search the internet for the most reasonable price. Be sure to search often and book early as great fares sometimes become available. The airport of choice is O’Hare (ORD) which is located closer to the hotel. Midway (MDW) is in Chicago also but a distance from the hotel. Please read “hotel transportation” below before booking a flight to Midway.

Hotel Transportation

Free shuttle service is provided by Windy City Limo’s to the Westin Lombard from O’Hare Airport only! The shuttle schedule is as follows: O’Hare Airport to the Westin – Thursday – 11 am, 1 pm, 3 pm, 5 pm and 7 pm Westin to O’Hare Airport – Sunday – Pickups at 8 am, 10 am, noon, 2 pm and 4 pm Shuttle buses will have a MAGIC sign in the window and will pick up at the following O’Hare locations: Terminal 1, Door 1G * Terminal 2, Door 2E * Terminal 3, Door 3G * Int’l Terminal, Door 5E Pick up will be in the middle aisle when you exit the doors from baggage claim. If you are unable to find the shuttle, you can contact Windy City at 866-949-4639. You may choose to arrive at Midway Airport but there is no free transportation available and a taxi will cost approximately $40.

NOTE: If you use a power wheelchair/scooter or other device which cannot be folded and need wheelchair accessible transportation, you can contact Special Needs Chicago at (630) 668-9999 or visit their website to make arrangements online, specialneedschicago.org

Register here: https://www.magicfoundation.org/annual-adult-convention/

How Cushing’s has broken my body

It isn’t April anymore, but 2014 week’s events have inspired another post by Catherine trying to explain a few specific limitations and misunderstandings:

From http://muskegfarm.blogspot.com/2014/05/how-cushings-has-broken-my-body.html

 

I was planning to take a decent break after the whole “post every day in April for Cushing’s Awareness Month” thing, but I somehow woke up knowing I needed to get this thought (and information) out there…

When my exhaustion comes up or people are around me a while, I continue to be told/asked things like:
“Have you tried walking?”
“If you did a little extra each day, you’d build muscle.”
“Stress hormones are the problem?  Well, stop stressing!”
“I know you’re tired, but if you don’t exercise, you’ll lose muscle and gain weight.”
“Are you counting calories?  Not doing much, no wonder you’re gaining weight.”

I know these questions stem from ignorance about the disease and some people really are wanting to be helpful.  But it really is counter-intuitive, I’m not making that up. And when people feel the need to say these things to me it still hurts my feelings a bit even when I remember that.  It just reminds me that they haven’t learned the basics about my disease, and it still feels as though they are blaming my symptoms on me again…like I’m a fat, lazy, idiot.

Who doesn’t know you exercise to maintain and gain muscle?  That you lose it if you don’t use it?  That eating too much (or incorrectly) causes weight gain?  That in healthy people, expending energy in the form of exercise can actually increase your overall energy in the long-run?

Seriously, my body is broken.  These “normal” systems just don’t work.

Cushing’s causes the demineralization of bones.  Cushies break bones very easily.  Ever heard of someone waking up to a broken ankle with no trauma?  Yep.  Breaking ribs just rolling over in bed?  That too.  Imagine that isn’t an 80 year old, but a 35 or 45 year old.  We develop osteopenia and osteoporosis as part of the disease process, and sometimes that is the first time doctors take notice that something abnormal is going on in our bodies.  I have a friend who is paralyzed because of broken vertebrae thanks to this disease.  It’s horrible.  And it isn’t his fault.

Now, imagine that your body also metabolizes your own muscles.  Really.  No amount of exercise can stop that, only curing the disease can…and then you have the long, daunting task of trying to rebuild amidst pain, exhaustion, and weakness.  I have a supplement that *might* help SLOW it but cannot stop it.  This is why people with my disease tend to have skinny arms and legs.  The first muscles to go (dramatically, anyway) are the quads and biceps.  It becomes difficult/impossible to walk up stairs, to stand unassisted from a squat or to get up from a seated position without using your arms.  And as far as the biceps go, one of the first things people notice is the inability to open lids…that requires your upper arm muscles more than you’d think.  As an example, I can’t open about every 3rd Gatorade lid these days.  It is absurd!  Something so simple, and I can’t do it.  And trust me, I open those bottles multiple times a day, every day, yet I am still losing that ability.  (I NEED the salt to raise my BP due to the lack of another hormone, that’s a diagnosed need and I will die of dehydration without it, so don’t even go there; I’ve already had that lecture from strangers in Wal-Mart or friends at a dinner table in public.)

At the same time, imagine your disease is CAUSING extreme, uncontrollable weight gain.  That’s one of the most obvious symptoms –it’s not the disease, it’s a SYMPTOM!  It doesn’t matter how many calories you cut or how perfect your diet is, the weight just keeps piling on.  At very best you can maintain (not lose), but even that isn’t possible for most.  It centers around your face (moon facies), your neck (sub-clavicular fat pads, buffalo hump, big chin), and your abdomen.  It is both firm on top (almost hard like a pregnancy belly) and soft on the bottom and hanging down (pendulous abdomen).  You CAN eat low-carb, low-starch, low-sugar to try to slow the onset of diabetes and weight gain, but you cannot stop what the chemicals in your body are doing.  Cortisol is directly involved in blood sugar within the body, and it can be catastrophic when either too high or too low.  For example, I eat roughly the same diet.  It isn’t perfect by ANY means, and I have variations, but in a high I gain between .5-2lbs a day and on that same diet in a low, I lose .25-.5 pounds a day.  It isn’t my diet, it is my cortisol levels…and the highs are outstripping the lows.  I’m in a pattern of slow gain, but it is very disheartening to see.

I mean, we need to use reason here.  If you are able to continue to exercise (strenuous is NOT recommended, I was flat-out told not to do that anymore), obviously it is a good idea to maintain as much muscle mass and strength as you can.  That said, I do NOT gain more energy if I use what I have.  Backwards perhaps, but true.  I don’t get rejuvenation from sleep either…often waking up feeling as tired as when I went to bed (Cushing’s messes up your sleep cycles, if you can get sleep).  Obviously it is wise to eat well, but remember most of us are dead broke with all these medical bills (and healthy food DOES cost more) and in my case, I am unable to cook any more.  I used to cook from scratch and eat a very clean diet, now even the energy to put a frozen meal in the oven, then remove it and dish it up later is too much most days.  We know that eating better is good for our bodies.  But, the reality is that being perfect in these things will not stop the disease nor it’s effects on our bodies.  Even if you mean well, please don’t say things that suggest we could stop it if we just tried harder or made a little change ourselves –it is hurtful and even if you don’t mean to, pushes blame onto us.

Now, I really need to explain the “broken” thing.  Our hormone systems (at least in the pituitary) generally work in feedback loops.  Parts in the brain take in information about our body’s condition, external environment, emotions, etc.  It interprets that information and makes judgments about what our body needs more or less of and sends the appropriate signals to other parts of the body (like the pituitary).  The pituitary then sends out stimulating hormones (in the case of Cushing’s, ACTH – Adrenocorticotropic Hormone) that tell other glands to produce their various hormones for use.  Again, in the case of Cushing’s, ACTH stimulates Cortisol specifically.  When there is sufficient cortisol in the body, it “feeds back” to the brain and pituitary that there is sufficient and the production of ACTH stops/drops.

With Cushing’s, that loop is broken.  Really broken.  There is a tumor getting in the way and throwing everything off.  The tumor produces ACTH on it’s own, stimulating cortisol production by the adrenals.  That in turn shuts down the pituitary from producing it, because there is already enough or too much.  It means that our bodies don’t react normally to internal nor external stressors.  We have FAR too much cortisol at night, when it should be almost non-existent in the body to allow for sleep.  We can have low cortisol during the day when we need it to be active.  We can be “revved up” like we’re running a marathon while sitting on a chair, resting.  But it also means that when we are stressed, ill (just a cold, even), in pain, or exerting extra energy, our body does not have the feedback to produce more cortisol to allow us to function appropriately.

This is why even in a high cortisol day, if I overdo it, I can crash so hard I can’t keep my eyes open.  Why I can become so cold that blankets, warm clothes and a wood stove (on an already warm day) cannot warm me up.  Why I can become nauseated (another low symptom) and that can lead to serious danger (Look up adrenal crisis).  You see, if I use up whatever my tumor is producing, generally speaking, my pituitary doesn’t fill in the gap because it is suppressed (asleep).  It doesn’t say “She’s doing too much, let’s produce more hormones so she can get through it.”  I’ve noticed this happen in cortisol highs and lows.  Generally I’m FAR more careful in a low because I already know my body cannot handle much of anything, but there were times when I would push myself in a high to get a job done, and then I would crash and burn.  It was bad news and I didn’t understand how dangerous it was at the time (okay, I still do it sometimes, but I REALLY try not to).  And sadly, unlike the normal progression of tiring while exerting yourself, it generally didn’t come with any warning signs.  I was capable, then I wasn’t.  It was sudden.  I cannot tell when I am coming up on that wall, but once I hit it, it is too late.  I am ill, not just a little tired.  And because sleep only does a little in my Cushing’s situation, I don’t start fresh tomorrow.  Now I’m in the whole…one I might not recover from.  This new level of exhaustion at times has become my new “normal.”  It’s bad news, but it’s my life.  So if I say something as silly as driving in “Nowhere, Alaska” is too stressful, I mean it.  It can make me physically ill, and it doesn’t mean I mentally stress over it..it is my body recognizing the energy drain.  I cannot lose any more of what I currently have…there just isn’t enough left.

I know this sounds so negative and depressing.  It is.  It wasn’t my intent to end that way, but the reality is, this disease hurts us so much already, we don’t need misunderstanding (even misguided desires to help) causing us more.  And seriously, just ask!  We would love nothing more than to educate others about what we’re going through.  We know it is so convoluted and overwhelming and that you can only handle little tidbits at a time, but any understanding is better than none.  It can be so hard for us not to do those things we used to, especially things we consider necessary, simple, or things we love and enjoy, and it helps to have someone understand that and not pressure us into doing more than we should or judging us for not reacting like we used to.  We still want to be friends and would love nothing more than to help you or go do those fun things with you…we just know our limits.  Stick by us and please don’t take it personally.