Life with Chronic Illness

As many of you know, things haven't been that great with my health lately.  I just had an appointment with my endocrinologist at MGH that was very informative, although not very exciting.  My ACTH levels have increased dramatically since a few months ago.  This is to be expected after a BLA and since I likely have tumor tissue left in my pituitary gland, this wasn't too surprising.  She seemed a little concerned about this recent increase and took a look at my MRI from July.  I hadn't actually seen the images, I just read the radiologist's report that said everything looked normal considering the 2 surgeries.  She thought my pituitary stalk looked pretty enlarged (the stalk comes up vertically from the gland and connects it to the hypothalamus).  This could be because I have tumor growth, which would make sense because of the increased ACTH.  She is going to have my neurosurgeon look at the MRI to see what he thinks, at the very least this increases my MRI intervals to…

It's hard to believe that tomorrow will be a whole year since my BLA.  I definitely think my expectations were high, and no, life post-op has not necessarily met those expectations.  Despite the many speed bumps (and brick walls), I still feel as though I made the right decision.  (Keep an eye out for upcoming posts about making tough medical decisions!)

To summarize the past year, I thought a pro-con-pro session was in order. (Thank you, Tri Delta for teaching me this important life skill of starting and ending on positives)
Pro: I have lost 42lbs, bringing me back to my pre-pituitary surgery weight.  About 70 more to go!  I got into school!NO OVERNIGHT HOSPITALIZATIONS!!!!!!I finally got to visit my bff and biggest supporter in Brooklyn - 3 apartments and almost 3 years after he moved to NYCCon: I still don't feel "well".  I have a hard time doing anything strenuous, I am still dealing with crazy swelling issues, I don't feel anywhere close to what I would imagine …

The National Institute of Health is conducting a quality of life survey meant for patient's who have or have had Cushing's Syndrome.  Please fill this out if you are a diagnosed Cushie!  I can't stress how important it is that big institutes like the NIH get accurate pictures of what life looks like before and after treatment.  A surgery to remove a tumor does not necessarily mean we "go back to normal".  In order to get help and support throughout the recovery process, healthcare professionals need to know what areas we need help with.



Information about this survey and your consent to participatePatients with Cushing's syndrome report decreased quality of life before and after surgical treatment. We are investigators at the U.S. National Institutes of Health who care for patients with Cushing's syndrome. We want to learn more about the patients' experience during the post-surgical recovery phase with particular reference to quality of life. We are inv…

Reading this again, I thought it was worth re-posting. Coming up on my 1 year anniversary of my BLA, I am still overwhelmed with the long term issues that Cushing's Disease and subsequent pituitary surgeries have left me with. This is a good reminder to me that I deserve to be here, I have the right to have others believe and support me, and I have the right to be healthy. You can read more about the PNA at http://www.pituitary.org

The Pituitary Network Association (PNA) is an international non-profit organization for patients with pituitary tumors and disorders, their families, loved ones, and the physicians and health care providers who treat them. PNA was founded in 1992 by a group of acromegalic patients in order to communicate and share their experiences and concerns. PNA has rapidly grown to become the world's largest and fastest growing patient advocacy organization devoted to the treatment and cure of pituitary disorders.

PNA is supported by an international network of…

Great NYT article about what to do/say for someone who's sick. I think you can apply it to some degree to any scary or chronic illness - some things are of course, meant for the extremely ill, but for the most part, I agree with pretty much everything on this list. (Except for "I should be going" - I took all the company I could get in the hospital and once I got home from each surgery!)

‘You Look Great’ and Other Lies
By BRUCE FEILER
Published: June 10, 2011

MY friend sat down and ordered a stiff drink. I didn’t think of her as the stiff-drink kind. An hour later, after our spouses drifted off into conversation, she leaned over the table. “I need your help,” she said. “My sister has a brain tumor. I don’t know what to do.”

Three years ago this month, I learned that I had a seven-inch osteosarcoma in my left femur. Put more directly: I had bone cancer. That diagnosis led me down a dark year that included nine months of chemotherapy and a 15-hour surgery to reconstruct my…

I read this just now after a very emotional day. Very strange. Thanks mom, Elaine, Adam and Andrew for being there for me today - I love you!

Aries Horoscope for Sunday, July 17, 2011
There is one very simple rule that you need to follow today: Ask for something, and you will get it. This includes attention from people you might think are too busy or too important to have time for you. Well, you're wrong about that -- right now, you may have an inaccurate idea of how you rank among your people. So if you need any type of support today, just ask for it -- you will get the help you need with little if any hesitation.

So far, July has not been a good month for me. As it turns out, I will NOT be going to school in August. Due to financial and ongoing health issues, I guess now is not the right time. It's been extremely hard to face that reality because it was one of the few areas in my life where I saw forward motion - it would've gotten me out of Plymouth and it was something I could be proud of and actually use my brain.

Instead, I'll be hanging out at my mom's while we figure a few things out.

In the last few weeks, my health has taken a nosedive. I started gaining weight again (seriously?), was diagnosed with asthma, and have not been able to sleep the last few weeks. I have TONS of swelling in my legs (and everywhere else) that I had been able to get rid of with salt and medication adjustments but now it's not going anywhere. Walking to my car at work results in increased swelling and shortness of breath. Not a good thing.

Because of all of this, I decided to see an…

With so much going on the last few months, this blog has been severely neglected. Events in the last week or so have inspired me to be better about blogging.

For those of you who don't know, possibly the biggest news in my life recently is....

I GOT INTO SCHOOL! I will be going to school in Maine to finish my biology degree and then continue onto medical school. I couldn't be happier about getting in. I have felt like most aspects of my life recently have been out of my control. I don't feel like I am where I thought I would be when I started this journey, now many years later, I was forced to move back in with my mom due to financial reasons, I'm not exactly thrilled with my job situation, I miss having friends around (I have no social life whatsoever...) and I feel like all of these things are finally starting to turn around with this little glimmer of future coming my way!

In other exciting news, I have some upcoming appointments. I've been at a standstill…

Today I logged onto the Cushing's Support Facebook group and heard some horrible news. A fellow Cushie from our community had lost her battle with Cushing's. Sarah was 28 years old, and has had two pituitary surgeries to attempt to cure her of this horrendous disease. Story sounds familiar, right? She posted on Saturday in our group begging for help, her doctors weren't listening to her when she said she still felt sick and that something was wrong. Days later, she is gone.

I have spent the past half hour in shock. I'm devastated for her lost life and her family's loss, I'm angry at her doctors for not listening, I'm frustrated with the medical community as a whole for not taking this FATAL disease more seriously, and I'm relieved, because it wasn't me. I feel guilty for feeling that, but it could've SO EASILY been me at this exact time last year. After my two pituitary surgeries, my illness and complications grew exponentially. I was g…

I'm way overdue for an update but I haven't had much to update anyone on! I started thyroid replacement and have worked my way down to 15mg a day, which seems to be a good dose for me. I'm down more than 20 lbs which is very exciting!

Yesterday was quite a scare for me. I woke up at 5am feeling horrible, and spent the next hour in the bathroom. I knew things were getting worse pretty fast so I called my cousin who lives next door, but he was at work and couldn't help me. My aunt who also lives very close was away in Florida, my mom and sister are in Colorado, so I called my dad who lives about 30 minutes away. He jumped in the car and stayed on the phone with me the whole way. I called my poor endocrinologist and woke her up, and she said to give myself an injection and get to a hospital ASAP. I felt my mind and body slipping, and by the time my dad got here, I was getting very nervous. I managed to give myself an injection of steroids and was soon on my way t…