So, I haven't been very open to everyone regarding what's going on with me- except for the symptoms that I post here and there on facebook. I have told family of course and my close friends--But, I am currently being tested for Cushing's Disease. I had my first appointment with the endocrinologist yesterday and he confirmed my suspicions. He is doing a full work up to rule out other diagnoses and then from there, he will tell me to go ahead with the Cushing's testing if need be. I got 11 viles of blood drawn today for various tests and on Monday, I will find out if I need to go ahead with the Cushing's test. It's scary. Cushing's is a tumor typically found in the pituitary gland (in the brain) or the adrenal gland (above the kidneys). It's fatal if left untreated and needs surgery to correct. Just what I need going into an unpaid internship!
It's very rare and not many physicians have experience with it nor would they even know it if they see it. So, I was lucky to get a start on it. It can also come from pregnancy. I read that, it's estimated that 10-15 of every one million people are newly diagnosed with this syndrome every year in the US and an estimate of 20,000 people have Cushing's in the US. Just a thought.
I've been getting a lot of my info on this website:
http://www.mayoclinic.com/health/cushings-syndrome/DS00470/DSECTION=symptoms
That will give you an idea of what I'm going through. To put it one way, I get a laundry list of symptoms that make no sense. Muscle Aches, Fatigue, Joint Aches, Swelling, Nausea, Weight Gain, Headaches, Dizzy Spells, Hot Flashes/Chills, Sweating, Acne, High Blood Pressure, Irregular Periods, Mood Changes- irritability, anxiety, frustration. What's frustrating is how it affects your cognition. I have difficutly with short term memory, speech production and formulation of thoughts. I know what I want to say, but I can't express it verbally. It gets lost on the way is the only way I can describe it. I have become very forgetful as well and my coordination sucks. I drop things and can't seem to move my hands the way I need to. My processing speed has been impacted greatly in general as well. It's scary because I am entering a field where I test children for these things. I need to be able to do them myself. I often worry if I am going to fail at this job because of this disease. On a physical note, I've got the noted and dreaded"buffalo hump" which is totally embarrassing. I've got the moon face and the weight around the torso. In this society, things like this, can make ya or break ya. It often makes me sad. I wonder if I will ever look the way I used to.
I am the one that actually suggested it to my kidney doctor, who in fact, agreed and sent me to the endocrine doctor. It's weird how you have to do your own research. She admitted that I would have been dismissed if it weren't for me showing her the back of my neck/back. She gave me the number for a Dr. Rita El-Hajj at Mainline Endocrinology in Wynnewood, PA at Lankenau Hospital. She was actually a fellow of the Mayo Clinic and is a member with the foundation currently. It is strangely, close to PCOM (my graduate school)- very close to City Ave. I saw a Dr. Williams, since Dr. El-Hajj was booked through to December. He was wonderful. He said he will get me "fixed." Let's hope they can.
Friday, August 27, 2010
Sophia's Update...A year later- YIKES!
So, I know this is supposed to be a blog dedicated to Sophia, but I was awful and didn't post anything for a year on her! And now, I have some more news to share. I think it will help me deal emotionally if I share it via Blog. But, let's first update on Sophia.
Sophia is doing well. She is getting so big. Just about 21lbs. She just turned ONE a couple weeks ago and time is flying by too fast. We have had a busy year. Primarily because I am working, going to school and taking care of Sophia. Sal works very late nights. We have also been dealing with the fact that she is delayed in her gross motor skills and is currently receiving Early Intervention. She was late to roll, sit, stand- and doesn't crawl (even though that's not a milestone technically). She is doing well now and is doing all of the above (but crawling- just scooting instead). So, hopefully we can progress quickly.
She is doing really well in other areas and it's nice to see that, since I primarily work with children with different disabilities. Sophia's receptive communication skills are blossoming and she is able to clap when asked, do hiphiphorrays, splash when asked, wave byebye, sign all done, etc. We are working on high five's and the sign for more. She is imitating up a storm- shaking her head yes and no when I do and looks for a reaction. She is also getting herself into trouble, even with just scooting around, she is quick to look for what she can get into (like chewing on the end of the rug or touching the candle pilars)! She babbles and jargons- tells us stories. She is a social little thing and loves peek-a-boo and any songs with hand gestures. Sophia loves chewing on books...oh- i mean looking at them ;-) She really does like flipping the pages and has begun to use an isolated index finger to point at the pictures while looking up at me. She points to things in the room as well. Sophia's favorite thing to do is dance. This child loves music! I am thinking of doing a mommy and me class this fall- depending on our situation. Sophia's new love- the swing. This summer she really enjoyed her new pool. Sophia's favorite thing to do is splash!
Sophia transitioned well to milk products and also is just about off her binky! She is using a sippy cup during the day now as well and is on all table foods! She doesn't gain much at a time, so the doctor wants to see her on Carnation Instant Breakfast for night time bottle. She loves the taste of that-- French Vanilla. Smells good.
Anyways- I'm sure there's more that I'm forgetting but for now, this is all that I can remember- as I've had a lot on my mind.
Sophia is doing well. She is getting so big. Just about 21lbs. She just turned ONE a couple weeks ago and time is flying by too fast. We have had a busy year. Primarily because I am working, going to school and taking care of Sophia. Sal works very late nights. We have also been dealing with the fact that she is delayed in her gross motor skills and is currently receiving Early Intervention. She was late to roll, sit, stand- and doesn't crawl (even though that's not a milestone technically). She is doing well now and is doing all of the above (but crawling- just scooting instead). So, hopefully we can progress quickly.
She is doing really well in other areas and it's nice to see that, since I primarily work with children with different disabilities. Sophia's receptive communication skills are blossoming and she is able to clap when asked, do hiphiphorrays, splash when asked, wave byebye, sign all done, etc. We are working on high five's and the sign for more. She is imitating up a storm- shaking her head yes and no when I do and looks for a reaction. She is also getting herself into trouble, even with just scooting around, she is quick to look for what she can get into (like chewing on the end of the rug or touching the candle pilars)! She babbles and jargons- tells us stories. She is a social little thing and loves peek-a-boo and any songs with hand gestures. Sophia loves chewing on books...oh- i mean looking at them ;-) She really does like flipping the pages and has begun to use an isolated index finger to point at the pictures while looking up at me. She points to things in the room as well. Sophia's favorite thing to do is dance. This child loves music! I am thinking of doing a mommy and me class this fall- depending on our situation. Sophia's new love- the swing. This summer she really enjoyed her new pool. Sophia's favorite thing to do is splash!
Sophia transitioned well to milk products and also is just about off her binky! She is using a sippy cup during the day now as well and is on all table foods! She doesn't gain much at a time, so the doctor wants to see her on Carnation Instant Breakfast for night time bottle. She loves the taste of that-- French Vanilla. Smells good.
Anyways- I'm sure there's more that I'm forgetting but for now, this is all that I can remember- as I've had a lot on my mind.
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