Skip to main content

Posts

Showing posts from 2014

Adrenal Crisis

I woke up Saturday morning not feeling well.  I had been shaky all night, but didn't know why.  I woke my mom up and asked her to take me to the ER after vomiting.  Instead of driving 45 minutes to Mass General, I decided to have her take me to a closer hospital that I usually go to for things like kidney stones, that are easy to deal with and not life threatening.  I also had my appendix out here 3 months ago.

I had a fever of 102+, and they immediately started giving me fluids, steroids, and zofran for nausea.  My blood pressure has been below 90/50 the entire time I have been here except after eating for the first time last night.

Of course, as things usually go when I end up in an ER, I was admitted.  First, I had a roommate that didn't stop coughing, but when she did, she would feel the need to fill in the silence with talking, and not just your basic roommate small talk, but how she was hallucinating.  My mom asked for a different room and now, I have a big room to myse…

Spoons and Handicap Permits

Recently, after many mornings of being out of breath and out of energy after walking from my assigned spot 0.4 miles away, I asked for a handicap permit so I could park closer to work.  I have had chest pain, stiff joints (especially in the morning), and shortness of breath, all due to Lupus.  I have not told a lot of people that I work with, simply because I know that judgement that will come from it.  No, I will not use my permit to park closer to the grocery store when I am feeling fine.  Yes, I may use it on days that I am having a hard time getting around, or when I am especially short of breath.

When a friend asked how it helped me, I tried explaining that it gives me a more positive start to my day.  I don't start the day feeling sick, I start it feeling a little better, and with more energy to give to my job.  The best way to explain this?  Spoons, obviously.  If you are not familiar with The Spoon Theory by Christine Miserandino, you can read about it here.

Generally, o…

GOODBYE APPENDIX

This past Friday morning, I woke up later than usual, and also felt very tired.  My chest hurt, and I had some minor abdominal pain.  Once I got to work (about 1/2 hr early), I decided I should probably go to the ER.  I dropped Huck off with my dad and headed to the closest ER.  I was taken in almost immediately, there are not so many emergency patients at that time of day.  I had my own room and had lots of labs and exams throughout the day.   My dad joined me when he got out of work, and finally, at 5pm, had a CT scan.  My appendix has been noted to be mildly enlarged on every CT, MRI on my abdomen in the last 5 year.  It was 1 mm bigger this time.  It was also harder to visualized and harder for me to feel pain because it was behind my colon, not in front.
The surgeon decided waiting could be more harmful to me than having surgery on Friday Night/Saturday morning.  We did not want to risk infection or rupture.  
When they opened me up, they found my appendix which definitely needed…

4 YEARS SINCE MY ADRENALECTOMY

Four years ago, I had a bilateral adrenalectomy.  When talking to other Cushing's patients who are contemplating surgery, I often tell them I would choose this 100 times over, I wouldn't ever make a different decision, but that's easy for me to say because I didn't have another option.  I was probably 300lbs, or close to it. The last weight I recorded was 285 at my last endocrine appointment, I knew I did not want to see 300, so I did not weigh myself for the weeks before my surgery. I was close to having a stroke, or heart attack, and either would be hard to recover from in my fragile state. My blood pressure was always very high, the morning of my surgery it was 160/100.  The radiation oncologist who I had a consult with mentioned that he didn't think I would live long enough to wait for radiation therapy to work (3-5 years).  I failed the test to get into some last minute medication trials to buy more time.  I literally had no choice but to have this surgery.  S…

July Update

I took a little blogging hiatus recently, as my life seemed to turn upside-down.

Earlier this month, a little boy who was near and dear to me passed after a brief, but serious illness.  It shocked everyone that knew this family. I worked for them for 2 years right after college, and was even present when their daughter was born.

Huck has now been with me for a whole year!  We took him home July 27th last year, and he is about 20lbs heavier, 8 inches taller, and a whole lot smarter. Here are some recent pictures of him!




And of course, it wouldn't be a blog post if not for some more health problems.  I have become increasingly jaundiced, with my liver function tests rising each time I have them checked.  This may be caused by one of the medications that is being used to treat Lupus.  Heading to MGH every 2 weeks for labs and appointments has not been so fun.  I am also getting back to testing for rest tissue, as I have not needed florinef for a few weeks, which I usually would nee…

A New Day, A New Diagnosis

I wrote recently about the crazy weird things that have been happening lately, including jaundice, hemolysis, chest pain, a weird rash that made my eye shut because of the swelling, swollen lymph nodes, and mild leukocytosis.  I saw the rheumatologist on Monday, but first saw the resident (or fellow, I'm unsure which she was).  She took my entire medical history, which is always difficult to go through, and remember every tiny, and major thing that has happened.  When the rheumatologist came in, he was already pretty convinced that I had Lupus.  I have a strong family history of Auto-Immune diseases, I have about 8 out of the 11 qualifying symptoms needed to make a diagnosis, and for once, this diagnosis was pretty straight forward.

Unfortunately, because I had to have my adrenal glands removed in order to treat  Cushing's Disease, the usual initial treatment of predisone to stop the flare up was not a good treatment for me.  Instead, I will take plaquenil, or hydroxycloroqui…

Sick and Tired of being Sick and Tired

The past few weeks have been a little crazy.  First, I turned yellow, then less yellow, then more yellow (repeat x5), we figured out that was caused by hemolysis (a breakdown of your blood cells), tests results come back relatively normal.  A few weeks later, I notice weird swollen glands.  Fast forward 2 weeks and I go back to the doctor for chest pain.  All tests, X-rays, EKGs come back normal.  Follow up with hematology reveals that I may have Lupus (cue tears).  Now, I have a big, red, angry rash on one cheek and a swollen, painful eye and face, maybe periorbital cellulitis?

So I've been just a little busy trying not to end up in the hospital.  After many tears, one sick day from work, and a grand total of 3 visits to my PCP's office just this week, I'm ready for a timeout.  A vacation not just from work, but from my other full-time job of trying (and failing) to stay healthy would do the trick.



Confusing Doctors

This year, FINALLY, I had a few months appointment free over the summer.  I took the summer off because constantly using days off for appointments and trying to figure out what's going on inside my body is exhausting.  It takes up my mind every free moment.  It's just hard to do for 9 years without a break.

This fall, things were kind of quiet.  A few appointments here and there, but mostly good things were happening, weight loss, researching growth hormone replacement (more on that later), and trying to improve quality of life, instead of fixing problems.
That changed big time this winter.  I started having this dull, intermittent abdominal pain.  I was falling asleep every afternoon, even after sleeping 10 hours each night.  Something just felt off.  
Then, I turned yellow.  I noticed it a month or two ago, but no one else seemed to notice.  I mentioned it to a few people, and then one of my coworkers mentioned that the whites of my eyes were yellow.  I saw a nurse practiti…

Why I Blog about My Health

As you may have noticed, I have chosen not to do 30 blog posts in April for Cushing's Awareness this year.  I had a lot going on, and found it difficult to not repeat so many posts last year.

I am asked why I blog about Cushing's a lot.  Why would someone post so many personal details (especially health related details) out for anyone to see?

I blog about Cushing's, and the aftermath because it has totally taken over the last 10 years of my life.  I blog about Cushing's because no one should have to wait 6, or 10, or 20 years for an answer.
I blog about Cushing's because when I knew what was wrong, no one else had ever heard of it.
I blog about Cushing's because it's not a small, easy thing to conquer.
I blog about Cushing's because there are people that I see every day that likely should be tested for Cushing's.
I blog about Cushing's because even some of the endocrinologists I've seen didn't know what the best tests were for Cushing…

Where Do You Follow Me?

Now that my beloved google reader is long gone, I have had time to experiment with a few different sites to follow all my favorite blogs.  I tried The Old Reader, which I liked because it was almost identical in the way that it works as Google Reader.  I tried a few others that I didn't love, and then I saw someone using the bloglovin app on an iPad, and knew I needed that in my life.  I loved the visual impact, and started using it that day.  I have found new blogs to follow, and was easily able to import all my RSS subscriptions.

What reader do you use for blog reading?  Where do you follow me?  Do you still miss Google Reader (I finally don't anymore!)





Educating Medical Students

A few weeks ago, I had the opportunity to speak at Harvard Medical School about my disease.  My endocrinologist does a lecture on pituitary disease, and I went with another patient of hers and talked about Cushing's Disease, and my adrenalectomy.

Of course, I was about to cry before I even opened my mouth to say anything, but that's pretty normal for me these days (stupid hormones).  I talked about my dreams 10 years ago before I knew I had Cushing's, how I had planned to be sitting in their seats, in medical school or even finished with school by now.  I went through my whole story, from seeing 5 different endocrinologists, to testing for more than 5 years, to how it was not one of those endocrinologists but my gynecologist who really diagnosed me with a pituitary disease.  I talked about getting so many parking tickets because my legs were too weak to walk up the hill to class, and how it's so hard to be a good friend when you are sick, and that was probably the har…

Rare Disease Day

Yesterday, 2/28 was International Rare Disease Day.  Most rare diseases are genetic, chronic,  serious, and debilitating.  You can watch the 2014 video below, as well as check out the Rare Disease website here and find out if your disease is rare.



My rare disease is Cushing's Disease.  I am a survivor of Cushing's Disease.  Many of these rare diseases are treated in help with the Orphan Drug Act, which gives pharmaceutical companies grants to develop drugs that can help people with rare diseases.  You can read more about the Orphan Drug Act here.

Unfortunately, I did not do a whole lot to raise awareness of Rare Disease Day this year.  Of course, I shared this video and posted some information on Facebook, but I did not talk about it much. Part of that reason was work, I am trying to limit talking about Cushing's and everything else going on medically.  Many people have different opinions on what is going on and what you should do about it and it's become an issue wher…

Olympic Obsession

I am definitely not a viewer of televised sports.  Sure, if I am offered a ticket, I love going to a Red Sox game, but I will not voluntarily stand in the cold rain or snow to see the Patriots play in person.  I will watch the Super Bowl if the Pats are playing, or the world series if the Red Sox are, but other than that, I would rather watch Friends re-runs.

There is one exception to this rule - THE OLYMPICS.  I love everything in the Olympics, summer or winter, this is my every 2 year sporting event.  I watch the prime time coverage whenever I'm home, sometimes I even DVR it if my favorite events are on, I'm a huge fan.

I have been watching pretty non-stop for the last 10 days.  I love it.  I have laughed, cried, and clapped along when someone lands an impossible run.  My brother walked in on me crying my eyes out watching men's moguls (I might be aging myself with that term, I think it's called Freestyle or something now).  He was seriously confused, but those of yo…

Remember that time I had Cushing's Disease?

My Cushing's Dreams are finally coming true - in 2 days (!!!) I get to speak at HARVARD Medical School!  My endocrinologist teaches a session on pituitary disorders each year, and this year asked me to come along.  I have a brief presentation prepared, mostly pictures of me over the years, gaining more and more weight and becoming more symptomatic.  I will answer questions at the end also!  I have done this once before, as you may recall, but other people did the speaking for me.  My friend in PA school did her final group project on my Cushing's journey, so it's nice to have a little experience under my belt.

I mean, really though, I talk about Cushing's all the time.  It's not like there's a week that goes by where someone doesn't ask me about it, or I talk to someone about how I was once 285lbs.  I find myself mentioning it all the time.  Just recently, I showed a coworker a picture of myself close to my highest weight, and she couldn't believe it.  …

Happy 2014!

Happy New Year everyone!  I hope you all got to celebrate with friends and family.  I obviously spent it here in my friend's vacation house looking up at a ski resort.  (Although, we didn't ski.  It was too cold). 
2013 was another roller coaster year.  It started in the hospital with adrenal insufficiency, and ended with hormone craziness that left me on the verge of tears for 2 weeks.   I managed to fight through an adrenal crisis, kidney stones galore, hemiplegic migraines, and never ending strep throat.  I got some attention from boys (nothing serious though), spent more time with great friends, and managed to sneak in 2 vacations, one to Martha's Vineyard and one to New Hampshire. The biggest, greatest part of my year?  Huck, of course.  He's been my constant companion, my guard dog, my walking buddy, and my couch cuddle buddy.  Hands down, best thing that will probably ever happen to me aside from having/adopting a baby someday. 
I don't typically do New Yea…