Any time I run my fingers through my hair I’m collecting pretty big amounts of hair in my fingers. It’s a bit concerning. With the cortisol drop, although my cortisol amounts are now normal, they are not normal to what my body adjusted to for the past twelve years. My body is behaving like I have Addison’s disease, or very low cortisol. The muscle weakness and pain are consistent with that. So the hair loss isn’t really a surprise, but I had hoped it would be slowing down at this point four months later.

Will my hair come back? I’ve always had very thick curly hair, and I’ve not really known what to do with my hair being so thin. I’ve knitted a lot of chemo hats for charity, and I’m beginning to wonder if in the near future I will be knitting them for myself.

Let me explain something about being double the weight you should be – it is not fun going to see a new doctor. Any time I know I’m going to be seeing a new doctor, that date looms in front of me like a grim specter, filling me with dread. Seeing a new doctor is just another opportunity to be treated like garbage. It is yet another opportunity to be blamed for my condition. I could feel The Speech coming on, and I can just never get in the mood for it. To someone that doesn’t know me, I am just a number. A number expressed in pounds.

As grateful as I was to go to an endocrinologist to perhaps get a little closer to an answer, I was still going through my usual nervousness at meeting yet another doctor, and the humiliation that must necessarily entail. I practice my opening lines. I’ll throw in a little humor. Maybe that will make me a little more human. Maybe he might like me just a little bit and then that will delay the inevitable dehumanization that is coming.

The lady at the front desk is not exactly friendly. I almost forgot my practiced lines. Then the nurse comes. She is extremely pregnant. That throws me off my game. I didn’t prepare for this. I’m going to completely mess this up and he will just think I’m a complete loser. The nurse is going through all these routine diabetes questions. Everything here seems to be diabetes geared. My heart starts to sink. All he is going to want to talk about is diabetes. And of course I have to lose this weight to help my diabetes and the weight is all my fault and the weight is causing all my problems. I don’t know why I even bother going to doctors. I already know the answers.

Then the doctor walks in. I nervously use my very practiced opening line. He doesn’t seem to notice. Oh no! This is going very badly. I hand him my list of hormonal triggers with dates in a timeline. He does study that. He doesn’t look like I’m crazy. He looks at my neck, arms and ankles. He leaves so that I can change into an examination gown. Now I really don’t know what to think. What in the world will an endocrinologist be looking for in a physical examination? I don’t even remember to tell the truth of the matter now, but he seemed to spend a lot of time on my liver and was concerned that it was enlarged and swollen.

He said a couple of things during the exam, but he is not a man of many words (and he has not been in my subsequent encounters with him). The only thing I really remember is he pointed out the dark skin on the back of my neck. He explained that is was called acanthosis nigricans and was caused by insulin resistance. That one sentence was more information than I had received in years. I had a little glimmer of hope. He seemed to be taking my condition seriously.

After the exam he sat to mark up the lab sheet for blood work that he wanted done. He said that he was going to test for several things but he suspected I had Cushing’s Disease. I was just stunned. Not because I knew anything about Cushing’s Disease or what that implied or entailed but that he ventured a diagnosis. This was a completely new experience.

He was concerned about my uncontrolled diabetes. He asked if I could do any exercise. No. Don’t I wish. That’s why I was there. I’m totally disabled. I tried not to feel frustrated. He wants me to start insulin. Ugh. My heart sank again. My body was less me and more Big Pharma as the days passed. But he seemed to have a concrete strategy. He wanted me to gradually increase my metformin and take glucose readings twice a day. He had a definite plan. I can certain follow rules.

Next the sweetest nurse that has ever graced the planet took me to a training room to outline a diabetic diet and to show me how to use an insulin pen. I left there with a sack of samples and instructions, and was taken to have my blood drawn before I left.

I didn’t look at the lab sheet so didn’t know what to think. The phlebotomist had already been studying it. She said that she thought I might be breaking a record. The only way she could see to do it was to take NINE VILES of blood. What!?! Wow! He really is taking this seriously. I didn’t care if it took every drop of my blood in my body if it just yielded some answers. Send in Dracula! She also gave me a big plastic jar to collect my urine for 24 hours. I didn’t know what for, but hey, this was some serious scrutiny. Bring it on.

Is it wrong for me to complain? I think people think that since I did find an answer and did get a “cure” that I should just shut up and be happy. I’m having a hard time doing that. I am so far less than what I should be. I am suffering and miserable. I’m watching the train wreck that is my life.

So much that needs to be done, and I can’t do it. I can’t even do the very basics. I have to get a lot of help, just to get through each day. My house is a wreck. I’m embarrassingly behind on any financial recording/filing etc. I have a hard time thinking and planning. My brain just doesn’t work like it should. And what works is preoccupied with discomfort and pain.

But I shouldn’t complain because I’m alive, I have the help (although they are also worn and weary) and I have at least a better prognosis than my current condition. So I need to just suck it up and deal. I guess I’ve done so much sucking up and dealing for the past 12 years, I’m just all sucked out.

It’s not that I’m not grateful. I’m extremely grateful for the medical help I finally got, for the family that has kept me alive and for God that provides for me again and again. I have a hard time showing and expressing my gratitude because I am having a hard time right now showing or expressing anything. Ever since my surgery it has all felt like an extended out of body experience. I don’t know myself anymore. I’m experiencing feelings and physical pain and limitations I’ve never known before. I’ve had to relearn how to do almost everything.

I sincerely hope I will get better than I am right now. I really don’t know how I would cope in this state of being for years. Just months is enough to make me want to request a medically induced coma until I’m through this stage.

I know, I shouldn’t complain. How about I strike a deal. Anyone who thinks I shouldn’t complain can do a day long shift in my body. I’d love a break from it anyway.

Yesterday marked 15 weeks since my pituitary surgery. I have been through a lot since then – insomnia, weakness, nausea, face rash – but the thing that is relentless, the thing that never lets me forget is pain.

I sleep through pain. Any time I wake in the night, I’m in pain. I wake in the morning in pain. I am in pain if I’m sitting, laying, standing, leaning, bending, squatting or whatever other positions. In some ways I’ve gotten used to it and cope with it. What else can I do?

In other ways, I’m not myself. Things I usually would care about, I don’t, or at least not as much. The pain clouds some of my usual personality and usual reaction.

Except when I injure a muscle, I don’t have sharp pain. This is a constant ache in every inch of my body. This is so different than anything I have ever experienced before. I’ve had pain in specific places, even several places at once. But this constant and entire body pain is just unreal. I really don’t know how I cope other than just not having a choice.

I recently saw a large group of people that I had not seen in years. I was in a hurry, so that was part of my problem, but I didn’t say anything to anyone. My ability to converse was numb. The overwhelming pain robs me of the ability to do other ordinary things. It interferes with my ability to think and reason. It obscures my capability of planning and organizing. I don’t feel like myself at all.

In general it almost feels like I came out of the OR with someone else’s body. I feel completely different. I act completely different. I live completely different. I’m having to relearn how to do everything in this bizarre state of being.

I tell myself that the pain will pass. I hope that is true. It has been true for others, on a six month to two year time table. Please don’t let it take me two years. I’m not sure I have the ability within me to cope with this pain for two years, but before this I wouldn’t have believed I had it within me to cope with this pain for 15 weeks, but here I am, pain and all.

I am not meaning this to in any way be sacrilegious or in any way disrespectful and I hope I do not offend.

My son loves to be told Bible stories (“Tell me about God.”) and his favorite account and most requested is the creation account (“Tell me about when God made everything.”) So in retelling this again and again, it is never far from my mind and I can breathe the details of the story.

When I was diagnosed with Cushing’s Disease, I didn’t know anything about it. I started researching it before my surgery, but with the lack of material on it, and with the poor condition I was in, I still had not scratched the surface when I was wheeled through those OR doors.

My research after the surgery became more desperate. The cortisol crash was worse than I could have ever been prepared for. I could not sleep at all for two weeks. These things launched me into a desperate search for answers to how long this would last. During my quest for information I unearthed more and more information on all the terrible things cortisol does to the body. Thing after thing after thing was just so terrible and bad, and it seemed that the reaches were to nearly every organ and system of the body.

In my mind, this was in such contrast to creation, where each new day brought more order, perfection and completeness. Each day ended with God looking over His creation and saying, “It is good.” I kept discovering new cortisol issues and ending each day with, “This is bad.” So that is where my little Cushing’s creation story comes from. I wrote this during my darkest and bleakest days following my surgery.

The Creation of Cushing’s Disease

On a particularly vile week, Satan created Cushing’s Disease. And he said, let them have high blood pressure. And he said, this is good. And that was the first day,

And he said, let their growth hormone be suppressed so that their bones become weak and brittle. And he said, this really is getting good. And that was the second day.

And he said, let their skin be dry, and fill it with scars, stretch marks and discolorations. Make it lumpy and uneven. And he snickered and said, this is getting really good. And that was the third day.

And he said, let them be tired and weak all day and unable to sleep at night. He laughed and said, this is better than good.

And he said, let their muscles from head to toe be full of holes so that they are weak and easily injured. He let out a big laugh and said, this just gets better and better.

And he said, let them be insulin resistant and develop diabetes. Then he thought, a person with this will need companionship and support. With a shout he said, Let them be FAT, so people will find them ugly or even repulsive and they will be blamed for the symptoms because of their laziness and lack of control. And he held his middle and laughed and laughed and said, this is so good I can’t stand it.

And on the seventh day Satan looked at what he created and just laughed all day.

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.