Sunday, March 1, 2015

a nice, calm, quiet and icy day

I woke up well this morning. I don't know exactly how to explain what that means.  I woke up to calm.  Nothing woke me up.  No dogs barking or people moving about the house.  I just woke up because my body said to.

It was so nice and I felt very calm and relaxed.  I couldn't believe how quiet the house was with nothing running.  No TVs or radios and even people.  Everyone was asleep.

It started to snow after awhile and switched to icy rain.  Bad stuff for walking or driving on.

I did get a shower and got dressed and did laundry today.  Nevertheless, it was a nice calm morning.

Not everyone who reads this knows about my thyroid issues.  I have a goiter, which, from what I understand, is the overgrowth of thyroid tissue,  I need my thyroid removed.

I will paste here what I wrote to some other friends.

 I have been to Washington Hospital Center in D.C. having tests and meeting new (to me) doctors.   Not sure if I told you about the endocrinologist I have seen there.  He came highly recommended by Kathy McCue, an IBCLC, PhD and nurse practitioner.   I met her an a Washington Area LC meeting.  She felt my goiter and said I needed to see her guy.  I couldn't get in with Dr. Burman because he is not taking new patients.  Kathy got me in and got me an appointment!

Dr Burman took one look at my goiter and said "why haven't you had that thing removed by now"!   He set me up for tests and sent me to a surgeon at the same hospital.   Friday I went in and had an ultrasound on my neck.  Met with a surgeon- who said I have multiple "nodules" in my goiter/ thyroid.  She sent me for a CT scan of my neck and one of my chest.  She is concerned that my thyroid may have grown down to my aorta.   That will effect how the surgery proceeds.

I really like the surgeon (can't recall her name at the moment).  She really explained everything in a way that made so much sense to me.  I really made me understand how so many of my other health issues could be related to my large thyroid.   She said that celiac and Hashimoto's disease (what I have) can be related.  She said she could see why intubating me for my brain surgery was so difficult. 

So I got back in 2 weeks to learn the results of the CT scans and at that point we will work on setting up a surgery date.  Because of my difficult airway, I will be intubated while I am still conscious, before surgery, then knocked out.

I am in a perverse way, happy about all of this.  If you have seen a TV show called "Mystery Diagnosis" you will understand.  In that show, you follow a person through all of the trails and difficulties in trying to figure out what their real health problems are.    I have been to numerous doctors who have just wrote me off for being concerned about my enlarged thyroid and just wrote me prescriptions.  This has been going on since 1995!

I finally feel like I have found doctors who listen to me and understand and help me find out what is wrong and how to treat it!

I am still having headaches.  I think partially due to stress.  I will make an appointment with my neurologist anyway, just to be safe.


Yesterday was Rare Gene Day, so I wore my jeans and special t-shirt for my grandniece 

Here's a picture of me in my Rare Friends t-shirt

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