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.
Thursday, October 24, 2013
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.
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.
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
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!
Friday, September 27, 2013
Don't let your illness define you!
I keep seeing various meme's about how we shouldn't let our illnesses, struggles or tragedies define us. And while I understand the meaning behind that, every time I read one of those "uplifting" thoughts, it just hits me wrong. I've spent some time thinking about it, and I think I know what it is: While "Me" will never fit in a neat little box with just one definition, my disease by all means has become essential to defining who I am.
It appears the onset was approximately 17 years ago. More than half of my life has been spent living with this illness, and it became a part of me before I ever finished puberty or became an adult. I gained approximately 60lbs in one year despite not having changed my eating or exercise habits. My hair went from thick and straight to almost balding-thin and wiry. I developed bright red stretch marks from my elbows to me knees. I became bogged down by depression and anxiety for no apparent reason, and wen...t from being an early riser to being wide awake at night. Things have progressed slowly since then, and I am lucky (in some ways) that I do not have florid disease or I would not be alive, though it's toll increases the longer I am untreated.
This disease really does affect every process within my body and it affects every aspect of my life...My digestion, my energy, my bones and muscles, weight gain and distribution, my ability to sleep, my kidney function, my liver function, it literally shrinks your brain, my skin, my immune system, my veins and arteries, my heart, my ability to heal, my emotions, my pain tolerance, my teeth, my hair, my insulin (and thus blood sugar), my vitamins and minerals, my cravings, all other hormones in my body, my memory, and even my ability to communicate. And this is the simplified version!
I have Cushing's Disease. It has been so much a part of me for so long that I do not know what "normal" is, I don't know what is just "me" and what is the "cushings." I feel certain I will achieve a cure and at least come close to knowing, but I won't ever get back to the "me" I would have been without it. I will forever be a "Cushie" and that doesn't have to be a bad thing.
It appears the onset was approximately 17 years ago. More than half of my life has been spent living with this illness, and it became a part of me before I ever finished puberty or became an adult. I gained approximately 60lbs in one year despite not having changed my eating or exercise habits. My hair went from thick and straight to almost balding-thin and wiry. I developed bright red stretch marks from my elbows to me knees. I became bogged down by depression and anxiety for no apparent reason, and wen...t from being an early riser to being wide awake at night. Things have progressed slowly since then, and I am lucky (in some ways) that I do not have florid disease or I would not be alive, though it's toll increases the longer I am untreated.
This disease really does affect every process within my body and it affects every aspect of my life...My digestion, my energy, my bones and muscles, weight gain and distribution, my ability to sleep, my kidney function, my liver function, it literally shrinks your brain, my skin, my immune system, my veins and arteries, my heart, my ability to heal, my emotions, my pain tolerance, my teeth, my hair, my insulin (and thus blood sugar), my vitamins and minerals, my cravings, all other hormones in my body, my memory, and even my ability to communicate. And this is the simplified version!
I have Cushing's Disease. It has been so much a part of me for so long that I do not know what "normal" is, I don't know what is just "me" and what is the "cushings." I feel certain I will achieve a cure and at least come close to knowing, but I won't ever get back to the "me" I would have been without it. I will forever be a "Cushie" and that doesn't have to be a bad thing.
Wednesday, September 25, 2013
Cushie Steph makes an AWESOME music video!
This is AWESOME! A Cushing's Disease music video:
(Just be warned it has a little language.)
Monday, September 23, 2013
Dr. Oz Cushing's Surgery Video with Lori
I've asked on face book Cushing's groups for first-hand experiences, good and bad, with Dr. Prevedello, and I've heard NOTHING but good thus far! One of the people that messaged me privately was this woman, who appeared on Dr. Oz as they followed her surgery with Dr. P.
It was so touching, I thought I would share. And now that this might be my surgeon and hospital, it hits home even more. There are 3 parts:
http://www.doctoroz.com/videos/out-control-obesity-one-womans-struggle-cushings-disease-pt-1
http://www.doctoroz.com/videos/out-control-obesity-one-womans-struggle-cushings-disease-pt-2
http://www.doctoroz.com/videos/out-control-obesity-one-womans-struggle-cushings-disease-pt-3
It was so touching, I thought I would share. And now that this might be my surgeon and hospital, it hits home even more. There are 3 parts:
http://www.doctoroz.com/videos/out-control-obesity-one-womans-struggle-cushings-disease-pt-1
http://www.doctoroz.com/videos/out-control-obesity-one-womans-struggle-cushings-disease-pt-2
http://www.doctoroz.com/videos/out-control-obesity-one-womans-struggle-cushings-disease-pt-3
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