Six weeks after giving birth I was tested for diabetes again. Most of the time, women who have gestational diabetes return to normal at this point. I did not. I was told to go to my primary care physician for follow up. Again, I suspect I didn’t have gestational diabetes, but just at that point undiscovered diabetes.

With my health being poor and my baby being complicated (probably due to my cortisol levels), I didn’t immediately go to my doctor like I was supposed to. It was not until my son was nearly two and a half that I finally felt I could manage to go.

My blood pressure was too high, and at a level that needed attention. My A1c was 6.8. My doctor took a wait and see approach with my diabetes but immediately addressed my blood pressure. I tried several medications and ended up cycling back to the first one my doctor had tried. I gave it longer the second time around and the side effects settled and the medication was effective. I started taking 200 mg of CoQ10 a day and that lowered my BP an extra 10 points and got me to a great level.

My A1c started to creep up. I didn’t want to start taking Metformin, but eventually it was unavoidable. But my A1c still kept increasing. We added Amaryl. Still my diabetes was not under control. We doubled my Amaryl in December 2012. Metformin helps the body utilize insulin. Amaryl urges the pancreas to make more insulin. I believe that this increase in insulin was the catalyst that made me so much worse that I started my quest for answers that eventually led me to find out about my Cushing’s Disease.

I say that with a question mark, because I can really only guess, but the evidence was there. Looking back at pictures and thinking about symptoms and how I felt, I believe I had a remission from Cushing’s Disease from July 2008 to February 2009.

During this period I lost weight and kept it off. My face wasn’t swollen. I felt achy in my arms which would have been inflammation with the absence of the excess cortisol. In February 2009, my son contracted RSV and so did I. We both had it for several weeks, and my best guess is something about this triggered the return of my CD. After this I rapidly gained weight again. My face was swollen again. My achiness resolved but instead I had muscle weakness and started having a lot of trouble with foot pain. I started having reoccurrences of shingles to the point of nearly keeping a chronic outbreak.

Only now do I know that most women with Cushing’s have difficulty becoming pregnant. I also know now that those that achieve pregnancy often miscarry. I definitely became pregnant with full blown Cushing’s and was in full blown Cushing’s for my entire pregnancy.

At the age of 36, with relatively little effort, I became pregnant in August 2007. Because of my age, I kept it under wraps for the first trimester, but I had to start adapting before that. Luckily I had already gotten permission to work three days a week. After only a few days of pregnancy I was exhausted for the entire nine months. I would work three days and sleep the majority of the other four.

Within two months I was very swollen around my middle. I had to leave my pants unbuttoned and had difficulty bending over. As soon as I formally announced my pregnancy at the end of 13 weeks, I transitioned to maternity clothes.

Throughout my pregnancy, I swelled more and more. My blood pressure was already high and just continued to rise. I had to wear very loose, flat shoes, and by the third trimester could only wear flip-flops.

I tested positive for gestational diabetes at the beginning of my third trimester. I had not been to the doctor for about three years before pregnancy and I suspect I already had diabetes or at least borderline diabetes before I was pregnant.

One of the odd things late in my pregnancy was that the baby was turned head down, but never moved down and started any contractions or dilation. My OB started warning me as my due date approached with no signs of change, that I would probably have to be induced. I have since learned that CRH is involved in setting off those final birth preparations, and cortisol suppresses CRH, so I wonder if that was the culprit.

At 10 days before my due date my water broke. I was not in labor nor went into labor. The water breaking actually dissolved the cervical plug, which is usually lost much earlier in pregnancies because there is usually at least a bit of dilation.

When I got to the hospital, I was given Pitocin to induce labor. I also tested positive for pre-eclampsia, so was given intravenous magnesium. With all of this, I wasn’t going to be allowed out of the bed, which put to an end my pain coping strategy of pacing, so I opted for an epidural. Between the magnesium and the epidural, my blood pressure dropped from the 170/100 level it had crept to, to a more normal level, but since the baby was accustomed to the high blood pressure, this put him into distress. I was given adrenaline twice during labor to raise my blood pressure.

I now understand how high cortisol caused all these issues with my pregnancy and birth. I now also understand how these high cortisol levels caused issues for my son before and after birth.

My baby had colic like none I’d heard of. Instead of having colic a few hours a day, there were only a few hours he didn’t have it. From noon to afternoon he was cranky, and increasingly disturbed until 11 or midnight. From then until 4 or 5 in the morning, he cried non-stop, with nothing consoling him. From 6 in the morning until noon, was the only part of the day my son was almost normal. I now suspect this cycle was created by my high levels of cortisol which were passed to him in breast milk. The morning when he felt his best was the time of day that cortisol is naturally higher anyway, so he could better cope.

My son has other continuing issues which I suspect are related to his cortisol soaked beginnings, which I may document in separate posts. But he is a wonderful boy, sweet, smart, outgoing and charming. He is my beautiful little miracle, a marvel that beat the odds.

Cushing’s Disease is so rare and little known, I think it is a common experience for many to live with it and not know they have it. It can come on slow or fast. I think for those that is comes on fast, so that they have a rapid weight gain or some other sudden health issue, they tend to start seeking an answer faster than someone like me.

CD had a slow start with me. Looking back, I’m pretty sure I did not have it in 2000, but that I definitely had it in the spring of 2002. My onset was somewhere in that timeframe. It was subtle, so I didn’t note any alarming change that caused me to note the day or go to a doctor seeking answers.

For a period of over a year around this time, I had increased nausea, but it wasn’t severe enough for me to note exactly when or mention it to a doctor. In the spring of 2002 I had what seemed like a never ending sinus infection. It is not unusual for me to have a sinus infection in the spring due to pollen allergies, but one round of antibiotics had always cleared it up. This time I went through rounds of increasing strength antibiotics and nothing seemed to touch it.

Looking back into that doctor record, my blood pressure was about 30 points higher than it had been. I was 31 years old. It wasn’t high enough to merit treatment and was probably attributed to “white coat syndrome” so two clues passed without notice.

A year later I went back to my internist feeling tired. He thought my Zyrtec had backfired on me, which it can do, and advised me to drop it and see if that helped.

A year later, in 2004, I went back to my internist still feeling tired. He sent me to a pulmonary specialist, suspecting sleep apnea. I underwent a sleep study and was diagnosed with sleep apnea and prescribed a CPAP for use while sleeping. I was 33 years old. Another missed clue.

I went on and on like this. Like the poor frog who is boiled in the pot because he doesn’t notice the slowly increasing temperature of the water, my symptoms increased so slowly, and my life was so busy, I didn’t notice or at least think any of my issues were of medical merit.

I slowly gained weight with more of the mass in my middle. The back of my neck turned dark. I scrubbed and scrubbed it and resorted to wearing scarves all the time. My elbows and knees turned dark. I either wore very long skirts or pants and always wore at least 3/4 length sleeves, even in the hot summer.

I started feeling more stressed and less able to deal with stress. I blamed this on things going on in my life and at work. In June 2007 I had a breakout of shingles on my left temple. This served as a stress wake up call to me, and I requested a part time working schedule.

Hi, I’m Mama. I’ve always taken care of everyone, sort of being everyone’s Mama, long before I became a mother five and a half years ago.

Just a short while ago I was diagnosed with Cushing’s Disease. It is such a rare condition, that I realized I may go my whole life never meeting anyone else with it. One of the things that has given me comfort through diagnosis, surgery, and now recovery, is reading other’s accounts of their experiences in blogs and forums. It is my turn to give back. Maybe someone I will never know about will be comforted by my experience.

So here I give you my account and thoughts of Cushing’s Disease.

Mama