For twelve years I was bathed in a flood of cortisol, that almost killed me. But cortisol does have it’s advantages, such as reducing arthritis inflammation. My Cushing’s years are like a dream world (nightmare) that I went into at 30 and came out of at 42. A lot changed during that time – I got 12 years older. I developed arthritis in many joints and didn’t know it.

The first six months after my tumor removal I was just in constant pain all over because of an overactive inflammation from my body once the cortisol was gone. After a trip to the ER when I couldn’t walk due to pain in my hip, I learned that during my 12 year absence I had developed arthritis. It’s like a new me (not better, just different) on the other side of a 12 year transportation portal trip.

During the first several months of severe pain I did come upon the best supplements for me to control inflammation – namely Turmeric and Boswellia. The arthritis pain needed more to control it. I started looking at food triggers. I could tie my bad hip incident to dairy. After cutting dairy out of my diet I started seeing other diet changes that would help me. All grains and beans caused bloating and bowel inconsistency. I also suspected they were contributing to a lesser degree to my inflammation problem.

Then it occurred to me that eliminating diary, grains and legumes was essentially the Paleo diet. What’s nice about that is that it is becoming more common so there is a lot of information about it. Almost three months ago I started to try to implement the Paleo diet fairly consistently. What a difference it has made.

– My arthritis flair ups are minimal. I can usually explain differences to diet slips or extreme weather changes.
– My digestive functions are regular and void of bloating, gas, and pain.
– My blood glucose numbers were reduced enough that I could discontinue insulin and Metformin
– After getting off the insulin and Metformin I started having a bit of an increase in energy level so that I could a bit of exercise.

Prior to my Cushing’s nightmare I controlled my weight with the Atkin’s approach. The things I didn’t like about Atkin’s was limiting vegetables and use of processed and artificial foods. Paleo is what I always thought a perfect diet would be. So Paleo… here we go.

A friend of mine posted on her blog about scars. She had seen this site, Under the Red Dress Project, about a woman and her scars that were from life saving surgeries. Her point was that her scars weren’t ugly, but meant she was alive. They were reminders that she had fought back and won.

I don’t have surgical scars, at least not any that can be seen. I have a hysterectomy scar, but not on the outside. I have a scar at the back of my sphenoid sinus where instruments were inserted through my nose, through a drilled hole to reach my pituitary gland to remove a tiny tumor. I have lots of scars, just not surgical scars. I have Cushing’s scars. My abdomen is covered in scars. They are stretch marks that are a symptom of Cushing’s. The excess cortisol depletes collagen from the skin, leaving it thin, brittle and unable to heal.

When my endocrinologist was trying to get my diabetes (Cushing’s caused) into check, he started me on a once nightly insulin shot. The nurse explained that I should give myself the shot in my abdomen and rotate the location each time. She suggested a clock type rotation. Then she explained that I should not give the shot in any scars (including stretch marks) since that skin would not absorb it correctly. I’m sure I must have had a very shocked look on my face.

Every night is like playing a difficult level of a video game. I’m running through a tiny maze, trying not to touch the sides. I have only little less than half inch paths of actual flesh in which to give a shot.

So now I’m thinking about what my scars mean. My visible scars don’t show the defeat of my illness, they show my lost battles. They show all my lost time, lost youth, lost health. They remind me of the time the disease was winning. The one scar that shows the battle I won, is deep inside in a place I will never see. I just have to know it is there. A commemoration in a dark, hidden cave. My visible scars are real reminders if my ongoing fight, especially trying to find a small spot of real skin every night for my insulin shot.

Maybe someday if I can ever defeat diabetes, or at least get it under control enough to no longer need the shots, the meaning of my scars will change. I hope some day they will mean a battle won. But for now, to me, they just mean a battle lost.

It has been seven months since my life saving surgery that removed a tiny tumor from my pituitary gland. I have been making steady albeit extremely slow progress since then. From day to day it is so subtle that it is not perceivable, but if I look back a few weeks or a few months, the changes are more obvious. I still have a very long way to go, but I still have hope. It is just taking so much longer than I had hoped.

This is me the day before my surgery and then at seven months after surgery.

My hair seems to have finally stopped falling out, but that may just be because there’s not much left to lose. I’ve always worn my hair long, but I just don’t know what to do with this thin bit. There is too little to hold a clip. I’ve been wearing a knit cap when I go out to hide my bald spots, but the long scraggly stuff coming out from under the hat looks ridiculous.

So today I just bravely stood in front of the bathroom mirror with a pair of scissors and WHACK. I don’t have enough hair on my head to bother with a professional cut. Short it is, and much better than the long scraggly mess.

When I got so sick, I really wondered if I would see another birthday. It was the getting sicker and more disabled at an ever increasing rate that was so alarming. At the rate it was going, I couldn’t survive much longer.

But five months ago, I had my life-saving surgery. Five months ago, a skilled neurosurgeon removed a tiny tumor from my pituitary gland, and gave me hope. I think I will see many more birthdays now. I don’t know how much of my health I will ultimately recover, but up is a better direction than down.

I gave the ax to Ernest T
And so survived to forty-three

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.