Tuesday, August 5, 2008

Baby Bump, Nursery, and 32-week Ultrasound visit

Ok. Finally. At the request of many friends, Cushing's allies, and far away family members, I'm posting some photos of me pregnant with my little peanut pumpkin pudding pie.

It may seem odd to post baby things here on the Cushing's blog. However, we feel that we are blessed beyond measure with our little baby. Cushing's and pregnancy are thought to be mutually exclusive, meaning the medical community believes that a Cushing's patient's hormones are so messed up that the body cannot perform basic child-making functions. Luckily, I caught my Cushing's early and with the proper research and consultations, we decided to try for a baby before I have pituitary surgery.

We of course are thrilled, and we are super happy as we await the birth of our first little girl, now only 6 short Wednesdays away! We have a c-section scheduled for Wednesday, September 17th. I will be 38 weeks pregnant at that time. Because I had a 2 cm x 2 cm uterine fibroid removed in December 2007, my doctors feel that the contractions and pushing required to deliver naturally will put my weakened-from-fibroid-removal uterus under great distress. In fact, one said the uterus could 'rupture', the other said, 'explode.' I'm fine with the c-section!

In addition, sharing my pregnancy story here on this blog gives women with Cushing's a little hope about the possibility of having a child.


P.S. May I also proudly add that I have only gained 13 pounds with this pregnancy?! The baby is growing just fine. In fact, she is at the top of the growth charts at the 98 percentile when they measure her leg and arm bones. I have another ultrasound scheduled on WED August 3rd and nearly every WED until mid September. I'll have so much video and photos of this baby before she is even born! But each time we see her on that TV screen, we love her more and more!

P.S.2 Here's to the summer of the wild printed shirts! :)

Melissa, May 24, 2008 (21 weeks pregnant)

Melissa, May 24, 2008 (21 weeks pregnant)

Jonathan and Melissa, June 6, 2008 (22 weeks pregnant)

Melissa, June 15, 2008 on Father's Day (24 weeks pregnant)

Melissa, June 16, 2008 on the way to the ultrasound (24 weeks pregnant)

Melissa, June 16, 2008 on the way to the ultrasound (24 weeks pregnant)

Melissa, July 27, 2008 (30 weeks pregnant)

Melissa and Jonathan, July 27, 2008 (30 weeks pregnant)

Melissa and Jonathan, July 27, 2008 (30 weeks pregnant)

Melissa and Jonathan, July 27, 2008 (30 weeks pregnant)

Melissa, August 2, 2008 (31 weeks pregnant)

Melissa & Jonathan, August 2, 2008 (31 weeks pregnant)

Melissa & Jonathan, August 2, 2008 (31 weeks pregnant)

Artistic rendering of a baby at 32 weeks

Jonathan and Melissa share a love of geography and history. We want to raise a thoughtful and socially conscious child who is curious, giving, caring, loving, respectful and independent. We hope she will begin learning from her very first days in her nursery.

Baby Girl's nursery--view from the door

Baby Girl's nursery--general room view, moving left

Baby Girl's nursery--general room view, moving left

Baby Girl's nursery--general room view, moving left

Baby Girl's nursery--general room view, moving left

Baby Girl's nursery--general room view

Baby Girl's nursery--heritage maps. Countries where Jonathan and Melissa's families are from

Baby Girl's nursery--closet! Dresser was my great aunt's

Baby Girl's nursery--clothes hamper

Baby Girl's nursery--the French connection

Baby Girl's nursery--general room view

Baby Girl's nursery--toy chest. This was my cedar hope chest as a child. J & I added 3 inches of foam and recovered it, with help from my parents

Baby Girl's nursery--toy chest. See, it opens!

Baby Girl's nursery--shelves. Mixture of books, Filipino wood carvings, photos of the happy parents, and childhood memorabilia of Jonathan's

Baby Girl's nursery--the start of a great library

Baby Girl's nursery--the piggy bank. I made this and spent 15 hours plus on this one project. Silver money only, so we don't think we are rich on pennies!

Baby Girl's nursery--my mom made the drapes. Jonathan sanded and stained the rocking horse found at a resale baby store, and my niece added the finishing stains

Baby Girl's nursery--Jonathan sanded and stained the rocking horse found at a resale baby store, and my niece added the finishing stains

Baby Girl's nursery--general room view. This converts from a baby bed to a toddler bed to a day bed to a full size bed

Baby Girl's nursery--my niece Lisa painted these. She is so talented!

Baby Girl's nursery--the crib for our sassy little girl

Baby Girl's nursery--crib and changing table

Baby Girl's nursery--changing table and map of the world

Baby Girl's nursery--changing table. Thanks to Cassie for telling me I could find these cubbies for $5 each at Target!

Baby Girl's nursery--travel map. Why just learn ABCs when she can just as easily learn to spell Togo, Laos, Chad, Iran, Iraq, Oman, Qatar, Ghana, Gabon, Kenya, Benin, Niger, Yemen, Syria, India, China, Japan, Sudan, Egypt, Korea, Congo, Uganda, and Guyana while getting her diaper changed! Especially Djibouti! This map is mounted on foam board, and it will be a place to record her travels with map pins.


Melissa at the ultrasound, August 6, 2008 (32 weeks pregnant)

Baby's face at the 32 week ultrasound, August 6, 2008. She already has hair!

Our first ultrasound, January 29, 2008, 4 weeks pregnant. We've come a long way, baby! Click on image to make it bigger.

Our 5 lb 11 oz Baby at the 32 week ultrasound, August 6, 2008. Click on image to make it bigger.

Our 5 lb 11 oz Baby at the 32 week ultrasound, August 6, 2008. Click on image to make it bigger.

Our 5 lb 11 oz Baby at the 32 week ultrasound, August 6, 2008. Click on image to make it bigger.

Our 5 lb 11 oz Baby at the 32 week ultrasound, August 6, 2008. Click on image to make it bigger.

I've only gained 13 pounds. Doc says it is all baby, and that she will be a big one!

5 lb 11 oz baby
1 lb placenta
+ 2-3 lbs amniotic fluid
10 lb of baby
+ 3 lb in my breasts (he mentioned this too!)
13 lb of weight gain

I'm 32 wks 0 days today, baby measures 35 wks 4 days, so nearly a month bigger.

According to the profile of her abdomen, they see very little fat on her. She is a lean baby! Measurements of baby's bones (thigh, arm, foot, and skull) are all in the 90th percentile or higher. Abdomen is also 90th percentile. Doc said since all of these numbers are high, it shows that she is genetically disposed to being a big baby. He asked me to get data from our births and our siblings' births to compare. From what I know, big babies run in our family.

• Jonathan was 8 lbs. His sister was 7 lb 10 oz but 2 weeks early. J is 6 foot 1 inches and his sister is 5 foot 11 inches. Their maternal grandfather was 6 foot 4 inches tall.

• My oldest sister was 10 lb 5 oz but 3 weeks late. Her children weighed 7 lb 10 oz, 7 lb 10 oz, and 7 lb 10 oz. My sister is 5 foot 10 inches.

• My middle sister was 9 lb 6 oz. Her children weighed 8 lb 11 oz, and 8 lb 14 oz. Both were 11 days early. My sister is 5 foot 11 inches.

• I was 8 lb 6 oz. I am 5 foot 7 inches.

Based on data from the past visits and today’s visit, the OB projects that our baby will be 9 pounds 4 to 8 ounces by week 38 (c-section date) and 10 pounds 4 to 8 ounces by 40 weeks (full term!).

I was a bit shocked to think that I am carrying a baby that is already nearly 9 months big. The weight on my bladder is already so much… and she will gain another 3.5 pounds before delivery!

Baby was lying head down with her spine on my right side and facing my left side. She moving all around during the scan. It was the 1 hour after breakfast so she was doing her usual kallistinics!

She was chewing on her fingers and blocking her face with her forearms at various times of the ultrasound. They can see she has hair already.

Her internal organs continue to function as they should. Her stomach and bladder are full, so she is eating well. Her heart and brain look good, too.

The placenta is uniform and healthy, so she is getting the nourishment she needs. The amniotic fluid is normal. This is something to watch with a fast growing baby and a mother who may develop gestational diabetes. If the amniotic fluid were to rise while the baby continued to grow, it would indicate that the baby was becoming a little diabetic, too. Fortunately, that is not the case with us. See above where I detail our large family.

As for the big two that we are watching for me: gestational diabetes and pre-eclampsia. All looks good. He read my 3 hour glucose tolerance test as normal. I took myself off the diabetic diet, but we all agreed it would be good for me to moderate my intake of carbs in the last 6 weeks. I agreed… what a mom does for her baby!! As for pre-eclampsia, I have not experienced much swelling, I am not spilling protein into my urine. So this appears to be good for now. My doctors will continue to monitor me closely on a weekly basis.


Now we start on my weekly visits with both my high risk OB and my regular OB.

At my OB’s office last week, I had the first of the non-stress tests, or NSTs. This involved placing a fetal heart monitor on me and recording how the baby’s heart rate is affected when she moves or when I am having contractions. The nurse asked me if I was feeling contractions yet. I said no. I did enjoy this part a great deal. I was told to relax in the reclining chair for 25-30 minutes and hold the buzzer in my hand. After the nurse placed the fetal heart monitor on my exposed belly, I was instructed to press the button each time I felt the baby move. I felt like I was on a game show with a buzzer in my hand, or less glamorously like a kid in elementary school wearing Davy Jones-sized head phones during the hearing test. We had to push a button whenever we heard the different tones coming through the left and right sides. Does anyone else remember that besides me?! I digress. Anyway, the nurse confirmed that indeed the baby was fine and that I wasn’t experiencing contractions. They will do this test weekly at every OB visit.


I am relieved to have this much attention. I have gotten to the point where I worry about the baby. I made it through the hard part of the monthly appointments. Getting from weekly appointment to weekly appointment will be much easier. I am grateful for the relief I will feel as we move through these next six weeks!


Saturday, June 7, 2008

How did you find out about Cushing's?

I have been out of politics at the local level for far too long… since the November 2006 election, in fact. Many of you have wondered what on earth I could be doing for these 19 months. How could I be this quiet?!

First of all, let me start by saying thank you. I thank you for all the calls and emails. I do apologize for not being so good at getting back to you. I do have an explanation, and I hope you will indulge me a bit and read a bit further. I promise it is not your standard the-dog-ate-my-cell-phone excuse.

I also wanted to take a few moments to write down all of my thoughts and information in one place. I want people to be able to read my words, so there is no confusion about what this is or isn’t.

I hope that by telling about my experiences, I will help inform at least one person (or a dozen :) about Cushing's. I've included some resources that it has taken me over a year to find. I put it in one place to make things easier: photos, diagrams, videos, articles, etc. The videos on the left navigation bar are fascinating and very informative. I hope you will stick around and check things out. ~Melissa


As you know, I moved with my fiancé Jonathan to San Antonio in November 2006 for a job opportunity for him. I took some time off post election as we moved into our first home, geared up the wedding planning, and tried to enjoy the holidays. Very quickly, however, I realized something was wrong with me. I didn’t feel like myself. For the next four to five months, I was stressed still, confused, crying a lot, feeling depressed, posting high blood pressure, gaining a lot of weight, and missing menstrual periods (2nd time in 14 months where I missed 4 periods in a row). I had terrible pains in my whole body, muscles and legs. I was a mess. Thinking all the wedding planning stress was the culprit, we decided to move the wedding from April to October 2007.

A few months later, there was really no relief from my symptoms. In March 2007, I went to my primary care doctor who checked my thyroid levels. The tests came back normal. The doctor was nice but didn’t have any concern to continue to test me. I cried. I knew there was something wrong with me. I was determined to find out what it is. I took to the internet and within an hour I found my answer.

I will never forget that day: March 28, 2007 at 4:53 pm. A quick research of my symptoms brought me devastating news.

I suspected that I had Cushing’s disease. Nine months, $100,000 in medical bills (our portion was only $4,000), and countless doctor visits, two MRIs, tubes of blood for lab work, and more tenacity than I knew I had got me to the end. On December 20, 2007, I would finally hear my San Antonio neurosurgeon give that same diagnosis: Cushing’s disease.

My endocrinologist says that Cushing’s is the most difficult diagnosis in the field of endocrinology if not all of medicine.

Leave it to me to be so extraordinary!

I am devoting this blog to create awareness for Cushing’s disease. It is my little attempt to shed light on this disease by sharing my own struggles and experiences on the path to diagnosis and, eventually, surgery.

I hope you will take a moment to read further.

Cushing’s is underdiagnosed because so many of its symptoms overlap with other, more common diseases. Doctors treat those diseases while telling us that Cushing’s is far too rare for us to actually have. The doctors-turned-mathematicians tell us that it is nearly statistically impossible for us to have Cushing’s. Yet, patient after patient have proven them wrong—through pathology confirmation at surgery—but there is still many more doctors and patients to reach out there.



Cushing’s disease is a very rare disease that affects an estimated 10 to 15 people per million per year, or about 3,500 people per year in the US alone. Those of us with this disease feel like this number grossly underestimates how many undiagnosed people there are.

Cushing's disease affects women five times more frequently than men.

Cushing’s disease caused by a benign tumor located on the pituitary gland, the little bean size gland hangs just below the brain. Named the “master gland,” the pituitary gland controls every hormonal process in the body.

These tumors are benign, or non-cancerous, tumors of the pituitary gland secrete increased amounts of ACTH. Most patients have a single adenoma. After two brain/pituitary MRIs and consults with two different neurosurgeons, we now know that I have two pituitary tumors: a 5 millimeter tumor on the right side and a 3-millimeter tumor on the left side. While small—teeny tiny most would say—these little buggers are wreaking hormonal havoc on my body. Even a tumor of one cell can cause major upheaval to a person’s hormonal balance.

Cortisol performs vital tasks in the body. It helps maintain blood pressure and cardiovascular function, reduces the immune system's inflammatory response, balances the effects of insulin in breaking down sugar for energy, and regulates the metabolism of proteins, carbohydrates, and fats. One of cortisol's most important jobs is to help the body respond to stress. For this reason, women in their last 3 months of pregnancy and highly trained athletes normally have high levels of the hormone.

When the amount of cortisol in the blood is adequate, the hypothalamus and pituitary release less CRH and ACTH. This ensures that the amount of cortisol released by the adrenal glands is precisely balanced to meet the body's daily needs. However, if something goes wrong with the adrenals or their regulating switches in the pituitary gland or the hypothalamus, cortisol production can go awry.


  • Rounding of the face (moon face)
  • Facial redness (facial plethora or red cheeks)
  • Acne

  • Hump on back of neck (dorsocervical fat deposition), called a buffalo hump
  • Weight gain around the belly with thinner arms and legs (truncal obesity) despite efforts to lose weight (lifestyle modifications)
  • Pink or purple stretch marks (striae) on the skin of your abdomen, thighs, breasts and arms
  • Thicker or more visible body and facial hair (hirsutism)

  • Muscle weakness
  • Extreme fatigue
  • Thin and fragile skin that bruises easily
  • Slow healing of cuts, insect bites and infections
  • Bone thinning (recurrent fractures, osteoporosis)
  • Recurrent infections
  • Sleep disturbances (waking in the middle of the night)
  • High blood pressure
  • Diabetes mellitus
  • Depression, anxiety, crying, and irritability
  • Confusion, mind fog, slowed memory

  • Low self-esteem

  • Irregular or absent menstrual periods in females

  • Decreased sex drive

When I read this list of symptoms, I couldn't believe myself. I knew I had just diagnosed myself. I was in shock. I was amazed. I had to wait over an hour before Jonathan came home from work. I remember that I waited for him to enter the house. I gave him a hug, and then I said, "I think I have Cushing's disease, and if it is, there is a 70% chance I have a tumor in my brain or pituitary." He of course was shocked too.

Not only did I experience nearly all of the symptoms on the list, I knew when I read the words "buffalo hump" that this was it. I just knew this is what I had.

Here is the buffalo hump picture I saw on the internet:

Here is my buffalo hump.

I searched the internet to see what else could cause a buffalo hump.

  • Cushing's disease

  • Long term use of steroids

  • Morbid obesity

  • AIDS medications

  • Kyphosis

  • Pituitary tumor

  • Hyperinsulinaemia

I looked up all the unfamiliar terms, and I knew they didn't apply. It could only be Cushing's.

I set up an appointment to see a doctor that was listed as an endocrinologist in San Antonio who understood Cushing's. However, I couldn't get in to see him until May 9th.

So for the next six weeks, I researched. I read. I cried. It was so painful to watch my body get worse. The waiting was awful. I noticed weight gain, sleep loss and a sudden personality change. I felt like my life was spiraling downward. I recorded 40+ symptoms in a journal to monitor patterns in my illness.

I didn't feel like myself, and I remember the probability lessons from my math classes. If I only had a few symptoms from the above list, I couldn't say with much probability that it was Cushing's. But as my list of symptoms and health complaints mirrored nearly every one of the symptoms for Cushing's, I knew it made the diagnosis of Cushing's even more probable--and very improbable that it could be several other diseases all happening at the same time. A doctor later confessed that doctors are taught to find one diagnosis that fits the slate of symptoms. However, because doctors believe Cushing's is so rare and improbable, they often treat the symptoms. As a result, the patient rarely improves and years pass before the patient gets the help s/he needs and deserves.

So I pushed forward, sought out information and specialists, all trying to see if I had indeed diagnosed myself. If not, I was prepared for someone to tell me what else it could be. As the days and months passed, doctors scratched their heads about my high cortisol and ACTH test results but yet hesitant to say for sure that it was Cushing's.

I always knew. And I will always be happy to say that, I was right. Even with news this devastating, it was important to finally know what ailed me. To my dying day, I will always be proud of my ability to trust my instincts and move forward despite all that I faced. :)

If you don't receive prompt treatment for Cushing's syndrome, other complications may occur, such as:

  • Bone loss (osteoporosis), due to the damaging effects of excess cortisol
  • High blood pressure (hypertension)
  • Kidney stones
  • Diabetes
  • Unusual infections (some patients suffer from boils)

Luckily, I caught my case of Cushing's early enough that I don't have any of these long term complications. Unfortunately, I know many ladies and gentlemen who have these and are still struggling with doctors to get diagnosed. Over the years, the body becomes debilitated by the overproduction of cortisol, and the body's systems are compromised.