Life with Chronic Illness

People have been posting this on Facebook so I thought I'd do one!  (I stole some others' answers though because I couldn't have said it any better)

1. The illness I live with is: Cushing's disease then Adrenal Insufficiency. I had Cushing's disease for 7-10 years and had unsuccessful pituitary surgeries in December '09, and February '10. I had a bilateral adrenalectomy in September, which left me with adrenal insufficiency obviously.

2. I was diagnosed with it in the year: 2009

3. But I had symptoms since: 2000

4. The biggest adjustment I’ve had to make is: saying no.  To work, friends, family.  It's been hard not being able to do the things I would like to do.

5. Most people assume: that I am just fat and lazy.  My body is still getting used to lower doses of steroids and it will take time for me to loose the weight and build up my strength again.

6. The hardest part about mornings are: EVERYTHING.  I am in pain when I get up every morning and it ta…

This is the MRI that set it all in motion for me.

From Road to Recovery

See the little area that looks like it's a little bit darker than the rest of the bright white pituitary gland? That's the tumor they never found. You can see it even pushed the right carotid artery out of the way (the black circle above it). Now, two and a half years later, I am finally done with this disease. That half of my pituitary gland is gone, there are still tumor cells up there and all I can do is hope they don't grow too fast, since they can't do any more damage to my body.

before having to call out sick.  I spent all weekend sleeping, went back to work on Tuesday ready for a longer week, felt a little "off" at the end of the night and fell asleep before midnight.  I woke up in the middle of the night super congested and with a very sore throat and a nasty cough.  Of course I would get a cold!  I called out Wednesday and decided to take a trip to the doctor's office to see what they had to say about this considering it was my first illness post BLA.  The NP I saw was incredibly nice and very sympathetic when I burst into tears when she told me I had to stay home at least another day.  (Who cries about not being able to go to work?  Something is wrong with me...) I spent Wednesday and Thursday sleeping, monitoring my temperature, taking Advil, and sleeping.

This morning I woke up feeling a little bit better so I decided to go to work.  Of course things like "How are you feeling?" made me cry about 12 times before I had a chance to …

8 weeks post op and I went back to work last Thursday.  I started out slow, a 6 hour day on Thursday and a full day on Friday, then 3 days off.  Thursday night I was tired and achey but I was surprised that it wasn't as bad as I thought it would be!  I had a horrible time waking up and getting ready on Friday, and was dizzy and nauseated most of the morning.  By lunch time I thought I was going to collapse so I went and sat in my car and tried to regroup before our notoriously crazy Friday afternoons.  
It was as busy as I remembered it being a few months ago and I struggled to keep up.  We finally finished and I had planned to meet my dad for dinner.  After driving home, I got into bed and just collapsed. My whole body hurt, I was exhausted, and I slept for 13 hours straight.
Yesterday I spent most of the day in bed.  I was still exhausted and in a lot of pain.  Today was a little bit better.  I slept most of the morning/early afternoon then managed to get up and get dressed and go…

It's been a little over 6 weeks since my surgery and I feel like I'm just getting more and more tired as the days go on.  I can't function on anything less than 10 hours of sleep, and I am still having trouble getting to sleep before 2 or 3am (sometimes even later!).  The sleeping a lot doesn't help fix that problem either.  I have tried a few days to make myself get up early but find myself extremely nauseated and having to lie down again.

I am going back to work in less than 2 weeks and although I'm excited to get back to a routine and have some purpose, I'm dreading the actual WORK part of it.  It's not like I'm going back to a desk job with 9-5 hours!

I am seeing a cardiologist on Friday to try and figure out what's going on with my heart.  I have a feeling it's probably related to everything else going on and my body trying to adjust to it's new "normal", but we're being safe and exploring other options too.

One of the cra…

Nothing is ever easy!  Last night I was feeling a little off and felt my heart racing.  I checked my pulse and it was over 140 (Normal is 60-100), so that had me a little worried.  I called the endocrinologist on call who said with a heart rate that high I needed to go to the emergency room.  We decided to go to the hospital across the street instead of driving into Boston, which was fine for last night but remind me never to do that again.

My mom and I got to the hospital and I went to check in.  The waiting room was full so I was dreading the long wait but hoping my situation would get me in fast.  After some convincing, I got into the actual emergency room where they took my vitals again.  My blood pressure was up to 156/110 (Normal is BELOW 120/80).  My pulse was down to 120, which is still too high.  They did an EKG which shows that my heart beat wasn't irregular, and hooked me up to some fluids after they checked my electrolytes and a few other things.  The doctor I saw was…

It's OVER!  My surgery went great - my surgery was on Thursday and I got to come home on Saturday like I wanted to.  I've been home for about 10 days now and I'm starting to get bored.  I've lost 10.5 lbs in 13 days though!  So that's encouraging that I'm losing weight that fast while I spend my day in bed or on the couch.  

I have found it really hard to wake up in the mornings, I have been falling asleep around 1 or 2am and waking up around 8 or 9, when I take my medication and watch TV for a while, but the last few days I've been falling back asleep until 12 or 1 in the afternoon.  I am getting really exhausted after doing small things, like going to the hospital across the street for lab work or going to the store just to get out of the house with my mom.  I am VERY achy like I have the flu but that's all normal, even good signs that everything worked and my body is not making any cortisol.
I go for my first post-op appointment with the surgeon Friday…

I don't have much to say except that I am terrified.  Not really for the actual surgery, but the aftermath.  I have been ready for this twice in less than 9 months and for some reason, this time I'm not ready.

A few months from now I'll look back and think this was nothing compared to the relief of no more Cushing's, but right now it's overwhelming and scary.

Hopefully I'll post an update at some point this weekend - otherwise call, email, text, facebook, whatever.  Can't wait to be able to say I'M CURED.

I totally missed the 2 week mark until my BLA until just now.  People have been talking and asking more about it at work, which is kind of nice.  I feel like the people I work with don't necessarily get the full picture of what I'm dealing with, how long it's been going on, and how difficult it is.  I have been thinking about printing out the letter for family and friends of Cushing's patients that Kate wrote for the Cushing's Help website and just telling people they can read it if they want to, but at the same time it's almost easier at work to have people just not ask questions because I am still so emotional about the whole thing.

I have a lot to accomplish in the next two weeks!  The pre-surgery nerves are starting.  All summer I've been wanting the day to come sooner, and now that it's coming up I want a time out.  I had my pre-op telephone screening today.  Apparently when you have had 3 hospitalizations already this year they don't make you …

My BLA is scheduled for September 2nd.  It's real now!  I will finally be trading up - getting rid of Cushing's Disease in exchange for Addison's Disease.  Nothing else too exciting to say about that.  It seems so far away but too soon all at the same time.

Recently I've been wanting to steal every single one of Melissa's blog posts :)  Go check out her blog at Cushing's Moxie - Fighting the Worst Disease You've Never Heard Of

This article made me really sad - the emotional and cognitive symptoms of Cushing's have definitely been some of the hardest for me to deal with.  Academics came easily to me throughout middle and high school, but once I got to college I started having trouble focusing and couldn't seem to wrap my head around complex concepts.  I couldn't study for tests, I felt like I had no memory.  It didn't help that my messed up sleeping pattern made me too tired to go to class some days.  Everyone (myself included) assumed that t…

I had my consults today with the adrenal surgeon and the radiation oncologist.  Both went well, I was preparing myself to have a hard choice with lots to think about, but instead my mind was almost made up for me.  I have been leaning towards having an adrenalectomy but everyone keeps trying to scare me out of it (doctors, family, friends).  I was prepared to give radiation a fair chance but the radiation oncologist basically made a case to have a BLA instead.

He thought it was a very obvious choice given my age and how long I've had to deal with this.  Waiting 3 years for something to MAYBE work while it probably damages the rest of my pituitary seemed like a stupid idea.

I haven't really processed any of this too much yet.  It's overwhelming to think I'm going to FINALLY be done with Cushing's, but at the same time trading it for another lifelong disease.

I had my followup appointment with my endocrinologist today.  It went MUCH better than I was expecting.  I thought I would go in, have her tell me to do more tests, and we'll wait to see what the tests show.  Instead, I will be having consults with a radiation oncologist and an adrenal surgeon so I can weigh my options, I scheduled another MRI to check to see if we can see any more tumor, and I was prescribed a new medication that might help while we wait.  The medication is usually used to treat prolactinomas, which are also pituitary tumors but instead of secreting ACTH like mine, they secrete prolactin, which causes irregular periods, infertility, and lactation.  My doctor has had 2 patients with Cushing's on this medication and one saw great results from it.  It has very few side effects and I only have to take it 3 times a week, but the one (pretty big) side effect I have to watch for is any change in my depression status.

One of my biggest struggles with Cushing's ha…

So I'm not doing the clinical trial.  My midnight salivary tests have been too low to qualify me for it.  Everything else was there, I just needed 1 high but my body was not cooperative, as usual.

I go back on May 10th to see what we're going to do next.

In other news, I've developed another symptom.  I noticed at work last week that my forearms were covered in tiny red dots.  They didn't blanch, so I asked one of the doctors I work with about them.  She said they were petechiae, which is little burst capillaries under the skin, and told me to call my doctor ASAP so they can run some tests.  I went the next day to my PCP's office, and the doctor there was great.  He was very interested in my whole Cushing's journey, and agreed with the doctor from work that they were petechiae and ran some tests.  My blood counts were good, (they look for low platelets or other abnormal counts) and I found out today that I don't have vasculitis, which is an autoimmune disea…

Today is Harvey Cushing's birthday, which means it's Cushing's Awareness Day!

http://en.wikipedia.org/wiki/Harvey_Williams_Cushing

Hopefully someday soon I will be a Cushing's SURVIVOR instead of a Cushing's patient.

Monday I had my official 6 week post op appointments with my endocrinologist and surgeon.  They went pretty much as expected.  My cortisol levels keep rising, and while not abnormally high yet, this is not a good sign and we will consider me not cured of Cushing's.  My surgeon said that since I am past the 6 week mark, I would officially be the longest delayed cure he has ever seen if my cortisol levels started to drop, so I think it's safe to say that the second surgery was not a success.  I could tell he felt bad about it, because he seemed interested and engaged in our conversation, where before surgery he was Mr. Business and didn't have a warm, fuzzy personality.  We discussed my options, and I managed to just make it into a clinical trial of a new drug.  I just have to have a high 24 hr UFC first, and hopefully the one I brought yesterday broke that normal limit so I can get started.  The medication should take away or improve all of the symptoms of Cushing's.  I…

Then I woke up on Monday morning with a fever of 104.2 and a sore throat.  Since 90% of the kids we've seen in the office this week had strep, I figured that's what it was and called my mom to come to the doctor's with me.  On the way up I had a bad feeling, and felt like I felt TOO sick if I just had strep.  Turns out my bad feeling was totally right.

We got there and my heart rate was around 140, combine that with a positive rapid strep test and my recent pituitary surgery and they sent me in an ambulance to MGH.  Of course, this is the one week that my endocrinologist is on vacation, so I talked to someone else who seemed very confused as to why I was going to the ER.   We got to the ER, my mom beat the ambulance (anyone who's ever driven with my mom shouldn't be surprised by this) and that started 36 hours of scary hospital stuff.

My heart rate wouldn't come down, even after tons of IV fluids, and a chest x-ray showed that I had a pretty bad case of pneumoni…

Tomorrow will be my first day back at work since December 15th.  I have VERY mixed feelings about it.  I'm super nervous, because my job is pretty physically demanding, so I'll be on my feet all day and I'm not sure how my body will handle it, seeing as small tasks like going to the grocery store or over to my mom's seem like a big deal these days.  I was hoping that when I went back, I would at least have good news to tell everyone.  Unfortunately, that's not the case.  I don't necessarily have any BAD news yet, but I definitely have been noticing more and more since I've come off the dexamethasone that I still feel like I have Cushing's.

As some of you may know, I'm not the best at holding it together (I cry if someone looks at me funny...it's a problem).  I'm really nervous for everyone to ask how I'm doing and why I was out for so long because I don't think I'll be able to answer those questions without tears, and I HATE cryi…

I did an interview last week for Cushing's Blog Talk Radio!  You can listen to it HERE, or find it on iTunes by searching for Cushings Help under podcasts.   It was really fun to do, thanks for having me Mary O!

I had my post op appointment with my endocrinologist today.  We pretty much got no news.  My 8am cortisol levels for the first 4 days after surgery were a little bit higher than she'd like to see them, but then I had two 24 hr urine tests later in the week that had low cortisol levels.  I had low levels after the first surgery too, so we're going to do some more tests and wait and see.  We discussed what my options were if this surgery turns out to not be a cure for me.  They're a little bit better than I had originally thought, but not ideal.  I would rather not rely on medication and wait for radiation to work or have an adrenalectomy and also be dependent on medication forever.

As far as how I'm feeling, I feel pretty good.  I'm not sleeping well, which could be due to the medication I'm on or because of the Cushing's, it's hard to tell.  I never felt the immediate weight off my shoulders like I did with the last surgery.  I felt so different even a …

No news yet, but I just wanted to thank everyone for all the calls, emails, and texts.  It really means a lot to know how many people out there are rooting for me!  Hopefully things continue to get better and this will be the end of Cushing's for me.  I'm so grateful to have such a great support system.  Happy Valentine's Day everyone!

I had my pituitary surgery Thursday.  We went in at 11 and I was in the PACU by 3.  Total surgery time - 2.5/3 hours.  I was in a different PACU this time, and what a difference!  After the last surgery, I was wheeled into a huge room lined with patients who had just come out of surgery.  No curtains, bright lights, very noisy, and there didn't seem to be enough nurses to go around.  Not the kind of thing that's helpful after someone goes digging around in your head.  I was there for way too long and it was the worst part of the last surgery.

This time, I woke up in a private room, with the lights dimmed, and one nurse who seemed to only have me to worry about.  My bed on the neuro floor wasn't ready, so they brought my parents back to see me here and said I would be there for a while.  It was fine with me!  THe two nurses that took care of me were great, and let me get up to go to the bathroom (which was a nice change from the other PACU).  I quickly realized that I had d…

On February 11th, my tiny tumor will finally be served an eviction notice. No extensions this time :)

I have not been sleeping at night the past couple weeks.  My body has decided to become nocturnal.  That leaves me many hours with nothing to do!  Cushing's causes a loss or disruption of your circadian rhythm, so the excess cortisol at night is keeping me awake, and the lower levels during the day make me tired.

I've been listening to a lot of the interviews on Cushing's Blogtalk Radio, they're all on iTunes.  It's been really interesting to hear other people's stories and doctor's opinions.  Listening to one of the interviews with Kate, who is also has Pituitary Cushing's, she brought up the idea that Cushing's patients are zebras and that makes getting a diagnosis so difficult.

One of the things that people always say in medicine is when you hear hoofbeats, look for horses, not zebras.  Cushing's disease is a zebra.  The symptoms can be explained by any number of other conditions, including diet, lack of exercise, polycystic ovarian disease, th…

This isn't fair has been the theme of the week.  I had a high 24hr urine, which is great because I still feel like I have Cushing's, but it also sucks, because it means I still have Cushing's.  I thought by now I would be done with everything, but instead we are starting all over again.  The past week has been interesting.  My body has rejected a semi-normal sleeping pattern in favor of staying up until 6 or 7 in the morning and sleeping all day.  I've been trying not to make the cycle worse by making myself get up at 11 or 12, but I definitely need more sleep than that!  I've been exhausted but unable to sleep.

So because I still have Cushing's, I have some options.  I'm not really a huge fan of any of them though.
1. Radiation.  I could elect to have radiation to try and "kill" the tumor.  This risks damaging the normal pituitary gland and could take up to a year to work, if it works at all.  I can't wait a whole year for something to work, …

I will need to have a second surgery sometime in the near future, but before they will schedule it I need to prove that I still have Cushing's by testing some more.  This means daily midnight salivary tests and a couple 24 hour urine tests.  The salivary tests are nice because they are quick and easy, but they are NOT fun!  You have to chew on a cotton tube for 3-5 minutes.  I've probably done at least 50 by now and still can't do it without gagging the whole time!  The urine tests are a pain, but for me they have been the best diagnostic test.

To make sure I test when my cortisol levels are highest, I've started tracking my symptoms the last few weeks.  The week after surgery, when I felt like I had been cured, I realized what having low cortisol felt like.  It's now crystal clear to me what my highs and lows are.  I had cyclical cushing's for probably 10 years, and I realize NOW that I was always testing when I had low cortisol because I felt worse!  I am pret…

Today I saw my neuroendocrinologist and my neurosurgeon.  After going over my test results for the last 3 weeks, we decided that a second surgery is probably the way to go at this point.  I am overwhelmed by all of this, but a little bit relieved too.  I have noticed the last week especially that I feel worse than I did before the surgery as far as my Cushing's symptoms go.  I have had high blood pressure, more weight gain, swelling, and I haven't been sleeping at night.  All of these symptoms seemed to be enough information for the doctors to go ahead with the surgery before we get the next results.  It's nice to know that I'm not fighting for a diagnosis anymore!

My surgery is set for January 28th as of right now, and as soon as we have an updated MRI and some more test results we'll be good to go.

So I had my first post-op appointment today with my Neuroendocrinologist. I went in expecting bad news - I've had a bad feeling that something isn't right the last few days. I had a dream last week that the pathology of the tumor came back negative, meaning they didn't take the tumor out. I brushed it off, because I tend to think worst case scenario, but it turns out I was onto something.

My endocrinologist said that the neurosurgeon was very pessimistic about the first surgery being a cure. He had trouble seeing a defined tumor in the gland, and he took out a piece of questionable tissue that turned out to be nothing significant, so that means the tumor is still there. The weight loss after surgery was probably due to disturbing the tumor enough so that it shut off, but now the tumor is recovering from the trauma of surgery and is working again. My legs are swollen, my face is puffy, and I've put back on 7 of the 11 lbs I had lost. My blood pressure was high and…