I would love to say I have a love/hate relationship with this doctor, but I don’t have the love. Within moments of meeting the man he starts dropping the acronym “BMI” at least once every minute. It was obvious from the moment he saw me that he knew that my weight wasn’t a symptom, but actually the source of all my problems. And my weight was all my fault because I was obviously not at all in control of what or how much I was putting in my mouth. Remember that he reached all these conclusions with one glance. Never asked me a question.

Now let me clarify that being treated like a no-good, useless, lazy, good-for-nothing, despicable, horrific, nasty, waste-of-air, less-than human being wasn’t new to me. All I have to do in my bloated Cushing’s body is walk around in any public place and I can get a lifetime of scrutiny in a few minutes. What was remarkable to me about this exchange was that in an instant he had summed up my problem and started talking about a gastric bypass – a very serious, dangerous and in many ways harmful surgery. Really? Don’t you think we should talk a few minutes and see if hand-to-mouth disease is my problem?

So after being blasted with BMI this and gastric bypass that for ten minutes, he did send me for blood tests. Everything came back negative. Next step was an upper GI scope to see if I had ulcers or other stomach issues.

This gastro guy is a very early morning person. So I show up at the outpatient surgery center before the sun graced us. I put my enormous Cushing’s body into a hospital gown and lay down on a surgical table waiting for this wonderful experience.

The nurses were very nice and caring. I’ve been blessed through my whole journey with wonderful nurses. The anesthesiologist showed up, and he seems to be a very popular man. He’s very friendly and kind. But then he starts with a speech:

Now honey, you need to take care of yourself. You are way too young to have all these problems. How could you let this happen? You need to do something about this. You need to turn this around before it’s too late.

Meanwhile I say nothing. How do I answer this? He is trying to be kind, but it’s not. He thinks he is compassionate, but this does not feel like compassion. I’m laying on this tiny surgical table in my little hospital gown and I have to listen to this speech. I just answer in my head.

I need to do something about this? What the heck do you think I’m doing? Do you think I’m laying here in this ridiculous situation for the fun of it? I know something is wrong, but I DID NOT DO THIS TO MYSELF. I’m sick of being blamed. And even when I am trying to get help, I keep getting blamed. People like me stop looking for answers. People like me stop going to doctors… because of people like you. Because of the doctors that gave me The Speech when I was there for something completely unrelated. I agree I am way to young to have these problems. I’m sick. I went to the doctor because I am sick. What else are you wanting me to do? You are in the medical profession. Isn’t it your job to try to help the sick? I guess if you are obese, it doesn’t matter what is wrong, you are the problem. Come back within the limits on the weight chart and you’ll get some care.

No ulcers. No stomach issues of any kind. As I lay in recovery and the gastroenterologist gives me this report, he has to do all his BMI and gastric bypass talk. Grrrrr. It’s getting really old.

My liver numbers have been off for a while now. It is not unusual for an obese person with diabetes to have a fatty liver. But since nothing else is panning out, maybe this is my problem. He wants to do a couple more tests before having a liver biopsy.

While we have been going through this step-by-step methodical process, I am getting sicker and sicker each passing day. Each day I wonder how I could possibly get worse, but somehow I do. But there has to be an end. I can’t get worse and worse and worse forever. At some point my organs will refuse to work. At some point I will be so swollen I will pop. At some point I won’t be able to move at all. At some point at the rate I’m going, I will die, and it’s not in the distant future.

The gastroenterologist’s nurse calls me to tell me that the last battery of tests all came back negative. She would like to schedule my liver biopsy IN A MONTH. The doctor is going on vacation for a month and doesn’t want to have it done until he is back. I feel my heart sink. I mutter through the arrangements. I hang up the phone, slump against the kitchen counter and cry. I can’t wait a month. I’m going to die. I have to find out what is wrong. I can’t just be in suspended animation for a month while this doctor goes on an African safari or whatever it is that he did for a month.

I call my primary care physician and leave the most pitiful message you can imagine on the nurse’s answering machine. This was Friday, and the nurse called me back almost immediately and apologized that the doctor was not in because his daughter was graduating. Could I come in on Monday? You bet! A weekend was nothing compared to a month.

I’d been working on a document. I had put all the medical events I could think of that had happened before and near the time that I seemed to get so much worse. I starting getting the idea this was hormonal in some way. Not mechanical.

When I gave my page to my primary care physician, he didn’t look at me like I was crazy or dismiss it. He said, “Maybe this is a crazy idea, but maybe we’ve been looking at this wrong. This would indicate that this is more of a hormonal issue. What would you think of going to an endocrinologist?” Sounded great to me. Then he added an interesting note. He would like to get me in to see the endocrinologist and give him enough time to have a stab at this before the gastroenterologist got back from vacation. He had made a face about the letters he had been getting from the gastro. I’m sure they were full of BMI and gastric bypass, which evidently wasn’t any more appealing to my primary care physician.

I started to think that perhaps the gastro’s month-long vacation may be one of the best things that had happened to me. I regained something I had lost for a good while – hope.

Beans, beans the musical fruit

I love beans, any kind of beans, but when my Cushing’s was at its worst, I couldn’t eat them. I had terrible bloating and gas without even eating anything, so I avoided any foods that had any gas producing potential.

I couldn’t eat anything for a few weeks after my surgery, but when I was finally able to eat again, one of the first things that struck me was, Hey, no gas! No belching. No gastronomical distress. It had been so long since eating almost anything caused me some level of discomfort, that I hardly knew what to think of having the world of food open to me once again.

I’ve been enjoying all kinds of beans prepared in all sorts of ways, as well as lots of other foods I had to give up during my darkest Cushing’s days – broccoli, cabbage, cream, grains, fruit. Now I can eat, yet I’m still losing weight at a rate of 2 or 3 pounds a week. During the Cushing’s dark days it got to where I could hardly eat anything, type or amount. Yet I was still gaining weight.

So to all the doctors that blamed me for this for the past decade – IT WASN’T MY FAULT. It didn’t matter if I ate or didn’t eat or what I ate. I was doomed from the inside. And you heaped your blame on the outside. Thanks for nothing.

Like the poor little frog in the pot of cold water that is eventually boiled because he didn’t notice the water slowly getting hotter, until 2013, I kept dealing with symptom after symptom and not realizing that I was essentially getting closer and closer to boiling to death. I knew I didn’t feel good, but blamed it on one thing after another that was going on in my life. Not knowing the source of my health problems I also didn’t know they were all stemming from the same cause and that they were beginning to snowball. The issues I had began to aggravate one another and get worse. I started feeling worse at a faster rate than before. And soon it was happening so fast that it woke me up and convinced me that I had to have an answer.

My diabetes increasingly worsened and got harder and harder to control. I had to take more medication. This was tough on my already stressed body. My liver started swelling and being sore. I started bloating in my upper abdomen after any activity to a point that I was almost totally incapacitated.

Adding to the complexity, I had been having out of control vaginal bleeding for a couple of years and during the last weekend of January 2013, that was so bad that I was bedridden for a week. This scared me into action. My primary care physician sent me to a gynecologist who did a biopsy and found pre-cancer cells. After all my difficulty I opted for a hysterectomy. I started to wonder if perhaps that would be the answer to my problems. Maybe an angry uterus was making me feel so bad all over. After the surgery it was hard to know what pain was post surgical and what pain was health problem x. As I neared my sixth week post surgery, I concluded that this was not the source of my agony.

My primary care physician next suspected my gall bladder. None of the tests indicated a problem, in fact, my gall bladder performed far above and beyond the standard. Still wondering if it was a problem of this nature, my primary care physician sent me to a gastroenterologist.

The usual pattern for a war is you fight many battles and eventually win the war. With Cushing’s Disease, it doesn’t work like that. On July 29, 2013, I won the war. I defeated a tiny tumor, smaller than a grain of rice that had wrecked my life. The surgeon, my hired soldier, cut off the head of my enemy. The war is definitely won, but the battles have just begun.

Diabetes attacks me every day, but I hold him at arms length. Visceral fat is in the midst of my camp. This one I have made very little progress with. It may be my last major battle. Muscle weakness sneaks up behind me again and again and again and bites me in the rump. Pain taunts me day and night.

But like all wars, prior battle victories urge me on to deal with the ongoing battles. Nausea that met me every morning with a blinding tenacity is almost totally defeated. My great opening fight with cortisol crash fatigue finally just ended by enemy surrender. Insomnia finally relented after a prolonged trench war.

I have some partial victories as well. Achiness still hangs around the camp, but he isn’t everywhere I look anymore. Face rash is still in my every reflection, but it’s numbers have been slashed. Extra weight is still ever present, but has been pushed back considerably.

There are more battles than I can document, some won, some in the heat of battle, some battles to come, but in all of this I know I’ve won the war.

I must go back to the front now, but knowing the war is won makes all the weariness, doubt, suffering and impatience worth it.

I’m taking a little detour from my story to talk about feet. I had always taken my feet for granted. After my Cushing’s onset (of which I was unaware) I started having a lot of trouble with my feet. I liked to wear sandals and my feet were always very dry and cracked. I started having regular pedicures to try to keep up with it.

After my son was born, that was the end of my job and therefore my pedicures. That was then also the end of sandals. As my Cushing’s got worse and worse, so did my feet. Then as I swelled and accumulated organ fat, I couldn’t reach my feet adequately to care for them. For the last year before my diagnosis, my feet were always caked in a crust of dead skin.

From my surgery until about 11 weeks later, I could not sleep through the night. I also ached from any sight activity I had attempted during the day. I received considerable relief from Epsom salts soaks. A welcome side effect of these soaks is that I could spend a little time on my feet that after surgery I could reach. After a while of soaking in the tub, I would just rub them with a washcloth and easily remove any dead skin.

It seems like such a simple thing, but to someone who had no access to her feet for months, it was an amazing luxury. It felt so clean and soothing to have maintained feet. I don’t think I will soon take my feet for granted again.

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