Saturday, October 26, 2013

New GP!

This week I returned to being treated by a GP I had had about 6-9 years ago.  He is very experienced, keeps up-to-date, and takes on the more difficult cases in town.  I needed someone who would not be intimidated by all the intricacies of a Cushing's Disease diagnosis and the ins/outs of surgery and recovery (since that is very much a long-term process), and I especially needed someone who would learn about my illness and needs during recovery, so that in an emergency he could make quick decisions.  If I show up in the ER in adrenal crisis, I can't have a doctor that will wait around for a response from Dr. F (my endocrinologist 3 states away) before acting...I want to live!  So, I set up an appointment, and it took about a month to be able to get in to see the doctor himself (others in his office could have seen me sooner), but it was well worth the wait!

I was worried that he would question my diagnosis, question my endocrinologist's credentials, not understand the breadth and depth of it's effects, not anticipate the long recovery time and need for continued monitoring and treatment post-op, etc...BUT I WAS WRONG!  I guess you get used to the nay-saying, judgmental doctors who automatically assume you're just fat and lazy, read too much on the internet, saw a quack, or are simply mad that you'd seek a second opinion, so when you see a "good" doctor that is both knowledgeable AND supportive, it is like a window opening from heaven, replete with golden beams lighting their face and the heavenly choral "Aaaaaaah!"

He did initially ask about my endocrinologist, but was more than happy seeing the positions included in his signature to ask no more (he has a CV of GOLD!).  He stated that he LOVED the thorough, well-organized dictations from my endocrinologist.  He did ask about my symptoms and wanted lots of detail (symptoms at time of onset, symptoms now, what signifies a high and a low, etc), but it really wasn't coming from a place of doubt, and honestly didn't even feel like he needed to know that to be able to treat me in the *felt* like he just wanted to know more, to have more information about a rare disease and what it looks like in real life.  He even went so far as to say, with compassion, that I must have been through a lot, with doctor's wondering what was wrong with me, people treating me like there wasn't anything wrong, etc.  !!!  If I weren't trying so hard to keep my brain and words in check (the fog, memory, and word recall/saying the wrong words are SO hard at times), I probably would have cried right then and there.  Yes!  I told him that years ago, he actually tested me FAR more than anyone else, looking for CAUSES for my unexplained bruising, CAUSES for my unexplained tachycardia...when other doctors rarely saw more than one symptom and generally tried to treat just that, if anything.  He was the doctor that gave me the typical "when you hear hoof beats, think horses not zebras," after having done the testing above, but I was nice and did not remind him of that.  (Now, if it were the OB I dealt with 2 years ago...LOL!) 

Then he asked what I wanted from him (not in a challenging way), and I explained Dr. F's unconventional practice, that I really need a good GP at home for emergencies and the day-to-day that understands the complicated nature of this disease, and we talked about adrenal crisis post-op.  He knew enough to make sure I knew there was a chance I would be adrenal-insufficient permanently post-op.  We talked a little about being hypo-pit (losing hormone production from pituitary damage -- either due to the tumor itself or the surgery) post-op, and even that there would be no way to know how much they might have to remove till they actually get in there, nor how my pituitary will react till after surgery and some healing.  We discussed that often multiple surgeries are required with my kind of tumor(s).  AND, since he is the medical director of about 2/3rds of the EMS in town, he did say they don't carry the solu-cortef that I would need in an emergency on the ambulances, but that if I had my emergency injection kit, they could call him directly and get legal permission to administer my medication (You often lose cognitive ability or go unconscious with an adrenal crisis, so we cannot assume I will be able to give it to myself...and while my family will be taught how to do so, we cannot assume I will always be with them).  I actually know the medical director (and EMS lieutenant) for the ambulance crews in my section of town, and would have to bring my emergency letter to them so that they are aware of my case and what to do, as again the medical director would need to give legal permission allowing the EMT's to administer the life-saving medication.  That was good to know. 

And I left with him asking for the before/after onset pictures and detailed symptoms list I made up for the surgeon.  He also wants to see my most recent MRI.  In the end it cost a boatload of mula, but it was SO worth it.  I feel like he is one that will enjoy the challenge and love the rarity of my case, and will thus SEEK the knowledge needed to treat me.  I feel like I will be in good hands in my home town of "Nowhere, AK."

Friday, October 25, 2013

Magic Foundation Convention

The Magic Foundation's Cushing's Convention's location and dates have been announced! 

April 24-27, 2014 in San Antonio, TX

There are more details yet to be ironed out, but every year they have medical professionals speak and educate about Cushing's disease, it's diagnosis, treatment, recovery, even living with it and the changes it causes.  Last year Dr. F (my endocrinologist) and Dr. McC (possibly my neurosurgeon) both spoke and I'm SO sorry I missed it!  I don't know who it will be this year, but I am SO hoping that everything will work out for me to be able to attend!  And as amazing and needed as that education is, what is drawing me even more is the chance to meet other be surrounded by people who just get it.  I've "met" many online, and it would be amazing to finally get to actually meet them in person.  Bring on the zebras!

Thursday, October 24, 2013

The Hormone Storms of Cushing's

You wouldn't expect someone who just drank alcohol to not react to it, would you?  No, that'd be silly.  It is a chemical in their body, and once there, they have no control over what it does to them.  Someone used to the effects of alcohol over time would acclimatize to it to a certain degree, but they cannot fully stop it's affects on their body or their actions.  Now imagine not having control over when the alcohol is introduced into your system, or how much is introduced, or how often.  Imagine not knowing it was coming until you were already tipsy or drunk.  Imagine not knowing how long you would stay drunk and not knowing when to expect the crash and hangover that would inevitably come.  Imagine getting to the point where physically you are always in one state or the other --drunk or hung over.  Now, tell THAT person they can choose not to be affected by the chemicals raging through their system.  Imagine how that person, force fed alcohol, would feel to be told it was a simple choice they could make to not allow themselves to be drunk or hung over? 

I was told a few days ago that the emotional upsets I feel due to the hormone cycles caused by Cushing's was something I could control.  "It is just like PMS, so you can recognize it and just not give in," is what I was told.  At the time all I could really say to this person is that it is like 100 times that of PMS.  They obviously still have not learned about my illness and don't seem interested in doing so, which hurts.  But the reality is, PMS isn't a very good comparison.  While both may be hormonal, that really is where the likeness stops.  It isn't natural, it isn't predictable, it isn't controllable, it is an instantaneous storm that sneaks up on you and flies away just as quickly, but when it is gone there is still no "relief," just a different set of symptoms and emotions.  There is no "calm" in this storm, you are either at one extreme or the other.

Monday, October 21, 2013

My first zebra print

I've been contemplating making/buying some awareness jewelry to go along with my two Cushing's Disease T-shirts, but just can't seem to find the perfect thing at the perfect price.  So, I'm probably going to order some of the yellow/blue awareness ribbon charms and figure it out as I go.  Jewelry made with them could be great "thank you" gifts to those who've helped in this journey (assuming I make them!). 

I also started considering zebra print items...I REALLY want a pair of crazy heels, but I know that there is no way I could walk in them so they would never get worn (Perhaps that'll be my "recovery" gift to myself in a few years?).  So, I've looked at a few purses but I don't want to buy a cheaply made one.  I rarely wear sunglasses in Alaska, so that option isn't worthwhile either.  BUT!  While shopping recently I DID find a zebra-print scarf and ear muff band!  They'll only be useful on the cold days of winter (we get mostly rain here), but I'm excited to add them to my outerwear wardrobe to show support for those who suffer from rare diseases.

Some hoof beats are made by zebras.

Saturday, October 19, 2013

Update 10-19-2013

I haven't updated in a while, so here's what is going on right now:

I'm still awaiting a surgery date.  Dr. P's endocrinologist has to go over my paperwork and decide if I'm ready for surgery.  He said I would hear back within 1-2 weeks, and Tuesday will be the end of week 2, so any day now, in theory.

Because of the feeling I got from him on that phone call (and all the negative reviews I've heard of this endocrinologist --even from his own mouth-- about his experience with and understanding of Cushing's Disease), I decided to come up with a "plan B", which then led to a "plan C" as well.  ;)

Dr. F (MY endocrinologist) sent a second surgery referral to a neurosurgeon in Texas at MD Anderson.  Dr. McC was my first pick, but surgery with him would have to wait until January 2014, when I have insurance coverage.  There are various reasons this might be the best scenario, but I'm not closing the door on Dr. P in Ohio yet.  Dr. F told me this week that Dr. McC accepted my referral and said he would be pleased to help me.  (Oh, and he has already fought and won the battle to be able to decide for himself whether he will preform surgery without outside oversight, so that means that I wouldn't have to play this waiting game).

Dr. F also had me schedule a phone appointment for this week to discuss going on medication while I wait for a surgery date.  I started 400mg daily (200mg at 8pm and 200mg at 10pm) of Ketoconazole on Tuesday evening, and so far so good.  It is taken at night to try to flip my diurnal rhythm back to where it should be (ie, low at night, high in the morning).  I have not needed a morning dose of hydrocortisone yet, but have them on-hand should I swing too low or my body not be "high" enough in the mornings.  I have noticed a few improvements so far, the earliest and most noticeable being my ability to sleep.  Many have said that it took a while for the medication to really kick in, and that they often felt worse for a while (with increased intensity of "low cortisol cycle" symptoms) until their body adjusted to the new levels.  I'm in a high cycle right now and hopeful yet more improvements will come, though I am a bit leery of the aches, pains, etc increasing.  I'm hoping it'll all go well and I can stay on this medication, getting my body in better health for my surgery and recovery.

Tuesday, October 8, 2013


Zebras (and their stripes) have come to symbolize rare diseases.  There is a common phrase used among medical personnel that goes something like this:  "When you hear hoof beats, think horses, not zebras."  And it is meant to remind them that the most likely cause is the one they should test for first.  BUT, far too frequently this phrase is used as an excuse by medical professionals not to take our concerns or opinions seriously, and instead of working their way up to testing us for those "zebra" conditions, they tend to treat all symptoms separately and fail to look for a common cause.  This can lead to years of frustration, heartache, and worsening illness for those of us zebras that are trying to survive in a world full of horses. 

I used to think animal prints were somewhat tacky, but I must say, I now find zebra print full of meaning and plan to add it to my wardrobe.  Stripes are sexy!