There's nothing nice about this "doctor" blog...

A Nice Way of Saying….

As you can see from the comments when you read the linked post on the blog "ER Stories - Shocking, Hilarious, Bizarre, and Sad Tales from the Emergency Room", it struck a nerve with the Cushie community. Frankly, I'm appalled that these so-called professionals talk this way openly on the web. I read quite a few posts. If I were one of their patients, I'd be suing the socks off of them. And I've never sued anyone.

Where does one draw the line with medical blogging? Is this a violation of HIPAA? Will other medical professionals condone this or condemn it? It's a gray area and one I'm afraid will become an issue if blogs like this continue. I am not for regulation of blogging, medical or otherwise. In my rose-colored world, professionals are professional in all aspects of life, including their blogging. But I am of the firm opinion this is unprofessional and inappropriate.

Physician, heal thyself.

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FYI, if you want to read some ER doctor/nurse blogs which I think are good blogging:

http://edwinleap.com/blog/

http://gruntdoc.com/

http://www.emergiblog.com/

http://www.impactednurse.com/

Traveling as a recovering Cushie....

The first section below was written yesterday while I was traveling. I have more to add after it.

Yesterday:

Can you tell I'm stuck at a major airport waiting on another flight out? Argh..... I managed to make the short leg with no problems, but our destination was covered in fog and backed up. Long story short version: Missed my connecting flight.

I'm so proud of myself. Why? I didn't need a ride, or any help, navigating either airport. Last year at this time, that was not true, although I was much better than during the previous trip! No wheelchairs, no hitching a ride on the glorified golf carts, no sitting down halfway down one terminal while trying to get to the main hub and to another. Nope...I walked it all, lugging my laptop and big purse-wannabe-a-tote-bag-a-ma-jiggee. Now, I wasn't as fast as some, but I DID IT!!

Hey, no stress dosing today, either! Not yet, anyhow. I'm feeling a little nauseous, but part of that is due to the fact I didn't get any time to eat until a few minutes ago. I think I'll be ok. No pains, no swelling (!!!!!) today, and most of all, no anxiety.

The little puddlejumper I came in on was about 3/4 full. I mention that because it has a bearing on my meandering tale. I was at the exit door on the right, and was supposed to have a seat mate. The other set of seats across from me was facing me, and there were two folks assigned to those two seats. The funny thing (and it really was funny) was that we were the 4 of the larger folks on the plane. There were others with probably the same size, but the logistics of the 4 of us was beyond hilarity. 4 of us sitting together.

Well, the flight attendant (FA), without being a bit rude, realized the situtation. Mind you, I wasn't complaining. The lady beside of me was, though. And her butt was bigger than mine. The dear lady across from me was a novice flyer (more about her later), and the gentleman beside of her was not. However, he was very uncomfortable. He was at least 6 feet tall, and at least 350 pounds.

FA started moving folks around. But she didn't move the four of us, first. She said to one young man, "Honey, if you want to go sit with your grandmother, you can." He went. She moved another person beside a friend/business partner so they would be
together. Then she moved the gentleman who was in our group of 4 with a "There will be more room for you to stretch out over there." The lady beside of me never quit complaining. Finally, FA looked at the complaining lady (CL) and said, "There
is a set of empty seats. Take your pick."

Mind you, our flight was all of 38 minutes long. I could handle it if CL could. Don't tell me FA was trying to balance the plane. There were plenty of folks on there as big as the 4 of us. They just didn't have to sit with another one who was their size. FA
was marvelous, though. She had a wonderful sense of humor and was very courteous the whole time.

Back to the lady who was flying the first time. She was Cushie. Love her heart. She
had all the signs and symptoms. And I didn't bring my cards with me! YIKES! She didn't have email, her purse was stowed and she couldn't remember her own (new) cell phone number. My purse was stowed, I had no way to write anything. When we landed, I decided I'd write down some info for her and hand it to her. I wanted to be
tactful, but I also wanted to help her.

It wasn't to be. When we landed, she had 15 minutes to catch her next flightand they whisked her away on a golf cart. Me, I had all the time in the world............. I didn't see her again. I'm so sad. She was such a nice, sweet, lady. I hope someone, somewhere will help her.

Today:

Things didn't go quite as smoothly as I'd hoped. The nausea got worse before I got on my 5 hour flight, I got very cold and shakey, and my head was hurting. While walking to get to my gate, I lost my balance and a dear, elderly lady stopped and asked me if I was ok. I said yes. I was not. I did have it together enough to know to take some cortef. Which I did. And ibuprofen for my head. That and a bottle of juice really did help, though, and by the time I boarded the plane I was ok. Not great, but ok. I got a great seat, though! Exit row seating! Stretch my short legs out seating! No getting up to let folks out seating!!

I don't know about y'all, but those airplane seats do not fit me right. I'm too short. My head hits the wrong spot, my spine is out of whack, and the small of my back is not touching anything. So, I have to grab a pillow, use a blanket, my jacket and whatever else I can find to "adjust" so I don't get the headache (a worse headache this time) and the backache. Still, once I do that, my seat cuts into the back of my legs. Yes, I'm short. I need a footstool to prop my feet on.

And yes, I get cold. I've learned to fly with enough clothes layered to handle that. And a trusty, small blanket that fits in my wannabe-a-totebag purse .

Soooooooooo, I read a whole book on the flight ("Protect and Defend" by Vince Flynn), did umpteen leg, ankle, and foot stretches, slept a couple of times, listened to my mp3 player, and chatted with the nice young man from Russia sitting beside me. He was reading one of Dan Brown's older novels ("Angels and Demons") and we discussed his books for a while, and then some others we'd both read.

Once I made it to my destination, I was tired. Very tired. At that point, I'd been up and going for 20 hours. That was tough for me. I know it's not for some of you reading this, but it was for me. My muscles ached from head to toe and I was bone-tired. When I got to baggage claim, I think someone must have realized this because a nice USAirways gentleman was standing there with my one big piece of luggage! I could have kissed him! The other luggage was just starting to be unloaded. I don't know how/why he had mine, but I didn't care. (I think the FA I had on the long flight had something to do with it. I helped her out with change and such, and she and I had a good conversation, too.)

I love my luggage, btw. It's an e-bag called the "Mother Lode", and it's so easy to pack, versatile, easy to roll and great for a Cushie without much muscle strength. I can't deal with two pieces of luggage. I can't handle it. I can strap my laptop case to it when I roll through the airport.

Speaking of luggage....you know that the new regs allow only one piece 50 pounds or under or you have to pay extra. Since my ticket was booked before July 9, I didn't have to pay the $15 fee for checking that one piece. When the dear man wrestled my luggage on the scale, it was moving between 49 and 51 pounds. Finally, it came to rest. 50.00 pounds. ON THE DOT! The fellow looked at me...looked back at my luggage....looked at me...."I have NEVER had a piece of luggage hit the fifty-dot-oh-oh exactly before." I never batted an eyelash. "That's what you call great packing, isn't it?"

(Added note: Man, am I ever sore today!)

My legs are killing me....

I know...another whine. But it's really not. It just another day in the life of a "Cushie". A (hopefully) cured Cushie. I woke up this morning with my shoulders hurting so badly I could not manage to get out of bed. No strength, lots of hurt. My left shoulder started bothering me last night but I shrugged it off ‘cause I’d carried in groceries and done some major house-cleaning. Ok, major for me, but probably not for you white-glove folks. Thankfully, none of my friends own white gloves.

Back to this morning. Since my surgery to remove the pituitary adenoma which caused my Cushing's Disease, I have been adrenally insufficient although now at 18 months out, I am producing some cortisol on my own. But, I have had enough bouts with adrenal insufficiency (AI) to be prepared. My good friend, Linda, told me to be a good Girl Scout and keep cortef (hydrocortisone, the replacement I take when I don't make enough on my own) beside my bed at all times. I do. Therefore, I was able to reach over and take a dose. What would be non-effort most of the time was tough this morning. Just reaching. Frankly, I was waiting on my merit badge to put on my sash after that.

Ok...so what does that have to do with the legs? Just bear with me. The pain moved down the course of my body. The other time I remember this progression was when I "crashed" after surgery and my cortisol level fell 28 points in a very short time. Yep...that hurt. And I don't mean crash as in falling. I mean my cortisol level crashed. I was sore for days.

So, it took me 2 hours to this morning to be able to function. And later, I had to take more to stay functioning. I was hurting, cold, dizzy, and my ears were ringing.

Just to be safe, since I have bouts of hypokalemia (low potassium), I took extra potassium (prescribed). I took ibuprofen. Nothing worked except cortef. It eased things. I have been able to wean down, for the most part, to 5 mg of cortef a day. Since this sinus infection, that hasn't been so. But I thought I was on the mend with that and haven't had to take as much the last couple of days. I guess it caught up with me. As we jokingly say in the Cushie community, I overdrew at the cortisol bank. I guess.

That's the problem. It's a guessing game. I think that's what happened. Since I've had to dose extra twice today to make it through the day, and that is all that has helped with the pain, it makes sense. Short of going to the ER to have bloodwork done, I really have no way of knowing otherwise. I did/do have symptoms other than the pain. I'm cold, and was freezing at an outdoor reception in 90 degree heat today after going to a wedding. My face and head have hurt. I haven't really been nauseated, but I have not wanted any food, except I've been craving salty foods. That's atypical for me unless I'm AI. I even passed up the buffet and wedding cake!!

I feel like I've been run over by a Mack truck. Flu, you say? That's exactly how my endocrinologist described how I'd feel when I started into AI.

For more information on AI, see the following links:
911! Adrenal Crisis, Addison's/Adrenal Insufficiency
Adrenal Insufficiency: What Pharmacists Should Know
Drugs and the HPA-Axis
Guidelines for Stress-dosing
Life-threatening Electrolyte Abnormalities
Anterior Pituitary Hormone Replacement Therapy

Now, my arms and shoulders hurt again....

Where's the cheese??

What is Cushing's Disease?

I have been asked that umpteen times by folks who care about me. Other folks just look at me like I'm from an alien planet, and even others just nod and go on like they already know. I'm sure they go right home and google it. Ok, maybe some of them do.

When you get right down to it, I've become a walking library of sorts with facts and figures most medical students and doctors don't know. It's a matter of self-preservation, but you already know that if you are fighting any illness.

So, what is Cushing's? There are two terms used with Cushing's: Disease and Syndrome. They signify the source of the illness, although the presentation is pretty much the same with both. Cushing's Disease is hypercortisolism due to a pituitary source of stimulation. Cushing's Syndrome is hypercortisolism due to an ectopic or adrenal source. There really is a third type of Cushing's called iatrogenic Cushing's which results from the overuse of corticosteriod medications. And actually another type called pseudo-Cushing's.

I want to discuss Cushing's Disease/Syndrome (CD/CS). CD/CS is an endocrine disorder caused by chronic exposure of the body's tissues to excess levels of cortisol - a hormone naturally produced by the adrenal gland. Pituitary adenomas, usually benign, secrete increased amounts of ACTH (adrenocorticotropic hormone), a substance that controls the release of cortisol in that feedback loop I mentioned the other day. It typically causes an overproduction of cortisol. Tumors of the adrenal gland and ectopic ACTH producing tumors can cause similar problems with cortisol overproduction.

What are the symptoms? The most common symptoms are:

• Striae
• Buffalo hump
• red-faced all the time
• sweaty or hard to control body temp
• High blood pressure (often hard to control even with medication)
• High blood sugars and/or insulin resistance
• Insomnia
• Fatigue
• Altered diurnal rhythm (See previous post)
• Secondary hypothyroidism
• Low hormones such as FH, LSH, testosterone, growth hormone
• Low Vitamin D
• Low ferritin
• Unexplained muscle, bone, and joint pain
• Easy bruising
• Difficulty when drawing blood
• Upper body obesity
• Muscle weakness
• Increased facial hair/body hair (hirsutism)
• Loss of hair on head
• Loss of menstrual cycle and/or ovulation
• Loss of libido
• galactorrhea

Not everyone has all the symptoms. And the weight gain can vary by individual. Some folks don't gain a lot. Others do.

Without 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
• Hypothyroidism

When the cause of Cushing's syndrome is a pituitary tumor (Cushing's disease), it can sometimes lead to other problems, such as interfering with the production of other hormones that the pituitary controls. It can also affect the optic nerves and carotid arteries if large. The majority of pituitary tumors that cause Cushing's disease are small (less than one cm in size).

Long-Term Remission Rates After Pituitary Surgery for Cushing's Disease: the Need for Long-Term Surveillance says:

Morbidity and mortality are higher in patients with Cushing's disease, with vascular disease a frequent cause of death.[2,32,33] Cardiovascular complications, including coronary heart disease, congestive heart disease and cerebrovascular events, contribute to the morbidity and mortality of patients with undiagnosed or untreated Cushing's disease.[34,35] Early diagnosis and successful treatment of Cushing's disease is therefore most important.

Now, diagnosis....that's a whole 'nuther ballgame. To mix metaphors, it is no walk in the (ball)park.

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