I am a terrible procrastinator. Anyone who knows me would agree with this. I am a Pisces, I have huge ideas, and a room full of projects that were started and never finished. I am terrible about sitting down and writing, but I really want to make an effort with this blog. Even if only one or two people read my posts and are more informed about Cushing's then I consider that a success.
I have felt for quite sometime that I have had a recurrence of Cushing's but I was told by my doctor that it was just taking my body longer than normal to recover from my Pituitary surgery. I even read a chart note that said "patient is unhappy with her life and is just looking for something to explain her problems." That really hurt, as I actually respected this doctor. So after that experience I resumed working with the specialist that diagnosed me in California.
I have been doing scores of 24 hour urine collections, salivas, and midnight blood draws. My fridge has been full of orange jugs of pee and my freezer stuffed with vials of spit. My family loves it! It has finally paid off. Two weeks ago I had a phone appointment with my doctor and after evaluating my labwork he agrees that I am having a recurrence. I had hoped he would say let's move on to a BLA (bi-lateral adrenalectomy), where they remove your adrenal glands and you essentially trade Cushing's for Addison's. But unfortunately he felt I am "early" in a recurrence and he wants to try a medical approach first.
I have been wary of trying a medical approach (it doesn't always go so well for people with Cyclical Cushing's). One of the local doctors in Arizona wanted to try a medical approach before my pit surgery but I would rather take the surgical option which has a chance of cure or remission than just suppressing the effects of cortisol with medication. But now I am at a place in my journey where I don't really have a choice. I take the medication and hope for the best or watch and wait as the Cushing's symptoms all return and get worse.
Luckily I belong to a wonderful support group of amazing people who gave me lots of great suggestions for starting this medication, Ketokonazole. And I am also surrounded by a wonderful faith community who is lifting me up in prayer. So far (3 days into it) I have only experienced some mild nausea and fatigue, and a slight increase in my chronic pain. I am expecting it to get worse as this week I only started out at half the prescribed dose, so ask me next week how I am doing.
So what is the plan? I am going to take the Keto, keep putting one foot in front of the other, and hope that either my neurosurgeon sees a surgical target (new tumor growth) on my most recent MRI, or that my Endo decides my case finally meets the criteria for a BLA. I just pray for the faith, strength, and trust in God to just walk my path with an attitude of gratitude each and every day.
Wednesday, December 5, 2012
Thursday, April 5, 2012
The List
1. My youth
2. My independence
3. My girlish figure
4. My memory
5. My identity
6. Time
7. My health
8. Money
9. Freedom
10. The ability to have children
11. A normal life
12. Sanity
13. Relationships
14. My IQ
15. Sleep
16. Physical strength
17. Stamina
18. My hair
19. My ability to enjoy food
20. My life....
Cushing's Awareness Challenge Day 3: Educate yourself and save a life!
Tuesday, April 3, 2012
Cushing's Awareness Challenge: Day 3
One of another wonderful thing about chronic illness is that when you have to get into your hidey hole because there is a tornado coming towards your house you have to make sure you have 1.) all your medication, 2.) emergency medication,s 3.) medic alert information, 4.) water (to take said medications), 5.) oh and everything else you are supposed to have in your emergency preparedness kit! Just one more way Cushing's livens up my day. Now back to my hidey hole...see everyone tomorrow!
Monday, April 2, 2012
My Story
Day 2 of the Cushing's Awareness Challenge: My story
I was 13 when I first started having medical problems, although it would be over 10 years before I would ever hear the word Cushing's. When I was in junior high I started having severe headaches and GI issues. My pediatrician told my mother that the headaches were because I didn't drink enough water, and my stomach issues were from drinking too much soda. (Even though neither of these were problems for me we doubled my water intake and eliminated like the one soda I was allowed to drink a week). The headaches and stomach issues continued. Then in high school I developed cysts on my ovaries. The doctor's explained to my mom that this happens sometimes and at 15 they started me on birth control to try and prevent the cysts. It didn't work.
I went away to college when I was 17. I was doing really well, but I began to gain weight. I was just about 100lbs and 5'4" when I went to school, so everyone attributed the weight gain to the dreaded "freshman 15." Over the next three years my weight would balloon up to 180lbs, I would develop high blood pressure, off the charts cholesterol, and I had a new infection every few months. I saw campus doctors for all sorts of ailments but the thing that finally got my parents involved and had me sent home from college was a psychotic break, essentially. I was placed on a student's in crisis plan my junior year and sent home for treatment.
I was diagnosed as being bi-polar and for the next 5 years I would go through medication after medication to treat the anxiety, depression and sometimes psychosis, but nothing really worked. And when I would complain about other ailments, fatigue, muscle weakness, infections, headaches, pain, weight gain; all of it was dismissed because I had been diagnosed with a mental illness.
After a few years I got into a routine and learned to live with all the symptoms I was experiencing. I saw so many doctors to try and figure things out but either they didn't believe me or they couldn't help me. Eventually I was accepted into medical school at the age of 25, something that had always been my goal. I had been doing fairly well, but the stress of medical school and the long hours and constantly being surrounded by sick people sent me spiraling into a tailspin medically. When we learned about Cushing's in class a lightbulb went off for me. I had nearly every symptom that was a hallmark of the disease, and I actively started seeking out an Endocrinologist.
It would take me two years and 4 Endos before I would get a confirmed diagnosis, and another six months after that before I made it to surgery. There were many times I wanted to give up. So many doctors, friends and family who told me I was crazy, lazy, depressed, attention seeking, or that it was all in my head. Well, it turned out it was. I had a pituitary tumor causing Cushing's Disease, which is what was causing all of my symptoms. If I had not been like a pitbull in pursuing a diagnosis I might not be here today. That is why Cushing's awareness is so important to me. There are many people out there undiagnosed, and I hope by bringing attention to this disease that people will find help like I did.
I was 13 when I first started having medical problems, although it would be over 10 years before I would ever hear the word Cushing's. When I was in junior high I started having severe headaches and GI issues. My pediatrician told my mother that the headaches were because I didn't drink enough water, and my stomach issues were from drinking too much soda. (Even though neither of these were problems for me we doubled my water intake and eliminated like the one soda I was allowed to drink a week). The headaches and stomach issues continued. Then in high school I developed cysts on my ovaries. The doctor's explained to my mom that this happens sometimes and at 15 they started me on birth control to try and prevent the cysts. It didn't work.
I went away to college when I was 17. I was doing really well, but I began to gain weight. I was just about 100lbs and 5'4" when I went to school, so everyone attributed the weight gain to the dreaded "freshman 15." Over the next three years my weight would balloon up to 180lbs, I would develop high blood pressure, off the charts cholesterol, and I had a new infection every few months. I saw campus doctors for all sorts of ailments but the thing that finally got my parents involved and had me sent home from college was a psychotic break, essentially. I was placed on a student's in crisis plan my junior year and sent home for treatment.
I was diagnosed as being bi-polar and for the next 5 years I would go through medication after medication to treat the anxiety, depression and sometimes psychosis, but nothing really worked. And when I would complain about other ailments, fatigue, muscle weakness, infections, headaches, pain, weight gain; all of it was dismissed because I had been diagnosed with a mental illness.
After a few years I got into a routine and learned to live with all the symptoms I was experiencing. I saw so many doctors to try and figure things out but either they didn't believe me or they couldn't help me. Eventually I was accepted into medical school at the age of 25, something that had always been my goal. I had been doing fairly well, but the stress of medical school and the long hours and constantly being surrounded by sick people sent me spiraling into a tailspin medically. When we learned about Cushing's in class a lightbulb went off for me. I had nearly every symptom that was a hallmark of the disease, and I actively started seeking out an Endocrinologist.
It would take me two years and 4 Endos before I would get a confirmed diagnosis, and another six months after that before I made it to surgery. There were many times I wanted to give up. So many doctors, friends and family who told me I was crazy, lazy, depressed, attention seeking, or that it was all in my head. Well, it turned out it was. I had a pituitary tumor causing Cushing's Disease, which is what was causing all of my symptoms. If I had not been like a pitbull in pursuing a diagnosis I might not be here today. That is why Cushing's awareness is so important to me. There are many people out there undiagnosed, and I hope by bringing attention to this disease that people will find help like I did.
Sunday, April 1, 2012
Cushing's is no joke!
Today is April Fool's and the first day of my 30 day blog challenge. I am going to write a post everyday for the next 30 days talking about my life with Cushing's. And while I love a good joke, and especially a good prank (as long as I am not on the receiving end), Cushing's is no laughing matter.
Cushing's Syndrome is caused by an excess of cortisol and can be caused by tumors on the adrenal gland, tumors on the pituitary gland (which is specified as Cushing's Disease), ectopic tumors, or exogenous use of glucocorticoids.
Symptoms of Cushing's Syndrome include:
-Rapid weight gain (especially around the abdomen and in the face)
-Distributions of fat specifically around the collarbone and at the back of the neck (supraclavicular fat pads and buffalo hump)
-Purple or red striae (stretch marks)
-Thinning of the skin
-Easy bruising
-Acne
-Proximal muscle weakness
-Excessive sweating
-Hair loss
-Hirsutism (growth of facial hair)
-Insomnia
-Reduced libido
-Amenorrhoea (cessation of menstrual periods)
-Psychological disturbances (anxiety, paranoia, depression, and psychosis)
Cushing's can also cause:
-Hypertension
-Hypercalcemia
-Insulin resistance
-Diabetes mellitus
-Heart disease
And without treatment Cushing's Syndrome can lead to DEATH!
It took 10 years, but I was lucky enough to finally get treatment. I am still sick and still fighting this battle but at least I have allies now. Education about this disease is so important, so if I reach even just one person in the next 30 days then this adventure in blogging will be worth it. Cushing's Syndrome: Get Educated, Save a Life!!
Cushing's Syndrome is caused by an excess of cortisol and can be caused by tumors on the adrenal gland, tumors on the pituitary gland (which is specified as Cushing's Disease), ectopic tumors, or exogenous use of glucocorticoids.
Symptoms of Cushing's Syndrome include:
-Rapid weight gain (especially around the abdomen and in the face)
-Distributions of fat specifically around the collarbone and at the back of the neck (supraclavicular fat pads and buffalo hump)
-Purple or red striae (stretch marks)
-Thinning of the skin
-Easy bruising
-Acne
-Proximal muscle weakness
-Excessive sweating
-Hair loss
-Hirsutism (growth of facial hair)
-Insomnia
-Reduced libido
-Amenorrhoea (cessation of menstrual periods)
-Psychological disturbances (anxiety, paranoia, depression, and psychosis)
Cushing's can also cause:
-Hypertension
-Hypercalcemia
-Insulin resistance
-Diabetes mellitus
-Heart disease
And without treatment Cushing's Syndrome can lead to DEATH!
It took 10 years, but I was lucky enough to finally get treatment. I am still sick and still fighting this battle but at least I have allies now. Education about this disease is so important, so if I reach even just one person in the next 30 days then this adventure in blogging will be worth it. Cushing's Syndrome: Get Educated, Save a Life!!
Friday, March 30, 2012
Moving sucks!
I don't know anyone that likes moving, especially the packing part. I hate it, always have. But having a chronic illness makes all the frustrations, difficulties and headaches of moving magnified by a hundred. And to make things even worse I am doing it alone. This is the first time my parents have not helped me pack and move. (I know I am 32, but you gotta love family. It is cheap help!) And my fiance is already in Dallas because his job there started a month ago. So I am left with an 11 year old and a dog, which more times than not are way more trouble than help.
It takes me about one hour to sort through and pack just one box. Generally that one task leaves me so exhausted that I need to rest for about 2 hours. And then after a morning of packing, cleaning, sorting, etc. I need a few hour afternoon nap just to be able to function! I am 32 years old I should be whipping through this, even though the work sucks. But instead my body is that of an 80 year old, and I am extremely limited in function. I actually look forward to a day when I can pack my house and move without pain, fatigue and everything else that comes along with being sick.
It takes me about one hour to sort through and pack just one box. Generally that one task leaves me so exhausted that I need to rest for about 2 hours. And then after a morning of packing, cleaning, sorting, etc. I need a few hour afternoon nap just to be able to function! I am 32 years old I should be whipping through this, even though the work sucks. But instead my body is that of an 80 year old, and I am extremely limited in function. I actually look forward to a day when I can pack my house and move without pain, fatigue and everything else that comes along with being sick.
Saturday, March 24, 2012
The last two years...
I have decided to accept a challenge to blog for 30 days straight about health, illness and the impact these issues have had on my life personally. So when I logged into my blog and realized it had been almost two years since I had written anything I was pretty sure that I was not going to make it a whole 30 days. But I am determined to give it a shot.
I have spent the last two years fighting Cushing's Disease. On April 7th, 2010 I had Pituitary surgery to remove a tumor causing Cushing's disease. I had high hopes that this would be a one shot cure for me, but like so many other things in my life this hasn't worked out quite like I planned. Two years later I am testing for Cushing's again, and I am just as bad off as before. Except, because of my illness I met the love of my life and his wonderful daughter. And when I thought I would never have things like marriage and children in my life I am now a mother to a beautiful young lady and I am planning a wedding.
I can't promise that this will be the most interesting or witty blog; or that I will have amazing life changing insights, but I encourage you to take this journey with me for 30 days in April as I attempt to bring awareness to Cushing's Disease in particular and illness in young adults in general.
For more information on Cushing's Disease visit: http://www.cushings-help.com/
For more information on cancer in young adults visit: http://www.masskickers.org/
I have spent the last two years fighting Cushing's Disease. On April 7th, 2010 I had Pituitary surgery to remove a tumor causing Cushing's disease. I had high hopes that this would be a one shot cure for me, but like so many other things in my life this hasn't worked out quite like I planned. Two years later I am testing for Cushing's again, and I am just as bad off as before. Except, because of my illness I met the love of my life and his wonderful daughter. And when I thought I would never have things like marriage and children in my life I am now a mother to a beautiful young lady and I am planning a wedding.
I can't promise that this will be the most interesting or witty blog; or that I will have amazing life changing insights, but I encourage you to take this journey with me for 30 days in April as I attempt to bring awareness to Cushing's Disease in particular and illness in young adults in general.
For more information on Cushing's Disease visit: http://www.cushings-help.com/
For more information on cancer in young adults visit: http://www.masskickers.org/
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