A neverending story....maybe....

Part I: A Neverending Story

I really am not a doctor basher. Oh dangit...I don't want to be, anyhow. But I know I'm not the only one who seldom finds a doctor who sees the whole picture. Yes, it's "just" a sinus infection. But it's more than that to me. Here is the letter I wrote today about my experience, with names hidden to protect the not-so-innocent:

I am a patient of Dr. M. This is not about her. However, I did see her on June 13 for a sinus infection which included a very bad headache and sore, painful areas below and above my eyes which worsened when I chewed, plus pain all the way to the back of my head. She did concur and prescribed 5 days of levaquin. Since I had transsphenoidal endoscopic surgery to remove a pituitary adenoma several months ago, a sinus infection is doubly concerning. I have fought sinus infections for years, and use preventive measures. However, I feel I need to be seen by a professional when I can’t get rid of it or control it with no antibiotics.

The levaquin did work for me, but it took about 4 days before my sinuses loosened up enough for a little of the “crud” to start coming out. I went out of town for several days, and returned late yesterday (Friday). My sinuses have closed back up, are very painful, and my terrible headache is back. I thought it would be better to see someone today rather than wait until Monday to try to catch this before it got worse. I felt like, and still feel I did not have a long enough course of antibiotics. I am not trying to play doctor, but I do know how my body acts and am not stupid.

I saw Dr. X at the urgent care on ***** Avenue. I went there because it is also where Dr. M works during the week and thought it would be a continuance of care rather than starting all over. Dr. X said my right sinus was very congested and my left was fairly congested. However, since the levaquin didn't work, he said it had to be viral and I needed to use Flonase. I refused the Flonase and told him I knew I could not use it but could not remember why. He then wanted to put me on sudafed and steriods. I politely refused both telling him I could not take the sudafed due to blood pressure issues and I was already on steroids due to adrenal insufficiency from my pituitary surgery. I am trying to wean off of those, but adrenal insufficiency, especially when magnified by an infection, makes it tough. Well, he was very unfriendly/antagonistic, did not want to listen to my explanation, and told me I could just wait and see Dr. M. I was in tears. I told him the levaquin was starting to work, but I just needed a longer dose, I thought. He said I didn't need to "just be taking antibiotics to see if they might work". I was furious but courteous. I told him that I never "just took antibiotics" and took very few of them compared to most folks. He was not interested in any of my history. He walked out on me! He said, "You can get dressed and leave." I was never discourteous and I did not deserve that type of management.

As for the Flonase, GlaxoSmithCline, Inc. include the following in their studies:

Like any other nasally administered corticosteroid, acute overdosing is unlikely in view of the total amount of active ingredient present. However, when used chronically in excessive doses or in conjunction with other corticosteroid formulations, systemic corticosteroid effects such as hypercorticism and adrenal suppression may appear. If such changes occur, the dosage of
fluticasone propionate should be discontinued slowly, consistent with accepted procedures for discontinuation of chronic steroid therapy (see DOSAGE AND ADMINISTRATION).

(As a sidenote: All the studies of the effects of Flonase on the HPA-axis have been done with “normal” patients, not those with a compromised HPA-axis and/or Cushing’s Disease.)

I do not want to mess with my HPA-axis more than I have to. The repercussions are normous and obviously not understood by Dr. X. I am already dealing with a tenuous balancing act trying to replace all the hormones lost due to a pituitary adenoma that was not caught for over 20 years. (Thank you, Dr. M for saying “endocrine” to me when I first saw you.) Each of these affects the other, and adrenal insufficiency is just one price I pay if these aren’t balanced properly. I realize this is a lot to understand in one office visit, but he should have treated me with more dignity and understanding. And he could have listened.

GlaxoSmithCline also says that Flonase is contraindicated with viral infections (which Dr. X said I probably had), yet he wanted to put me on it. I am at a loss to explain this, but perhaps would understand if he had taken the time to explain.

To summarize, I am in pain, will have no treatment until Monday when I can reach Dr. M, and I feel Dr. X was out of line.

---

Part II: Persistence Pays

I used to invariably expect the best from people, and that included doctors. I used to wear rose-colored glasses. Now, I invariably hope the best but expect the worst. But every now and again I get fooled. Today was one of those days.

After writing that letter, I hung over a steaming pot, took ibuprofen and mucinex, and prayed to the steam gods to loosen my sinuses so I could sleep. The next morning, with the feeling of umpteen hangovers I was wondering when the party ever started. When my phone rang, I contemplated ignoring it, but did pick it up.

"This is [Lulu]. Dr.M wants to know if you can come in this afternoon. She's double-booking just so she can see you. She got your fax."

"What fax?" (Did I send that in my stupor??)

"The fax you sent about your visit to the doctor on Saturday."

"I didn't send a fax."

"Will you hang on a moment?"

As I was "hanging on" it dawned on me. Ah ha! SOMEONE had sent it. I suspected the recipient of the letter who works for customer service in the medical organization to which the urgent care belongs.

She returned. "Yes, well, Dr. M. is talking about you. She said she got the fax and it's about you. Can you come in this afternoon?"

"I'll be there."

I did go, wishing I had a chauffeur so I could close my eyes against the glaring sun. Oh, my pounding head. Dr. M was a dearheart. She apologized mightily for Dr. X's treatment of me and said, "Off the record, we've had a lot of complaints about him." She professed delight in my letter. I hope she wasn't trying to make me feel better. No, I think she really meant it. BTW, I got a big hug from Dr. M to go with it. She does hug....that's good medicine, too.

A shot of rocephin, two prescriptions for 14 days of levaquin and some percocet later, I was off to sell my soul to Walgreens. Since it took 45 minutes, I found a cup of Starbucks and a place to rob wireless internet while I waited. Oh my aching head. (Have I said that already?)

I'm hoping my letter does some good, but I'm doubtful. I was even second-guessing myself after writing it and asked my good friends if I was over-reacting. I asked my parents the same thing. They assured me I wasn't, but that's what chronic illness does. It beats us down to the point we are almost apologizing for being ill, and then when we do react...well, we second-guess our reactions.

I have dreams of educating our local medical profession about my type of illness, but then reality hits when I meet a Dr. X. How do I overcome that God complex? And where do I find the energy? How do I make them read the new research? And frankly, how much time do they really have for that? The Doctor Will See You for Exactly 7 Minutes....

My head is still pounding. I just took a percocet. I hope it helps. Wonder if I should send Dr. X one?

---

These were originally posted on June 21 and June 23, 2008, respectively. I wanted to include them in Grand Rounds which has a theme this week, so am posting them together again. Thank you for your understanding.

---

Well, Dr. Rob did it again, and I just had to put in my two cents worth.

Sorry, Dr. Rob. Ok, not really, but I don't mean to be a thorn in your side. Do you trust your doctor? What a question and you have no clue how I reined in all I wanted to say. The short answer: NO.

The long answer: read my blog. Ok, I can get you started:

Vituperation [vahy-too-puh-rey-shuhn, -tyoo-, vi-] is.......

What did I say to Dr. Rob? Well, really to all the doctors who read his blog, not just him. (He just has the guts to bring up the tough stuff.) I tried to convey a lot in as few words as possible. Obviously, I was pretty wordy anyhow.

I used to believe doctors were infallible. Ok, close to it, anyhow. But my battle with Cushing’s disease (excuse me for bringing it up again, Dr. Rob, but it’s what I know) tainted my belief in just about all doctors. I won’t go into details. You don’t need that. You didn’t cause it. But, I believe, like all people in all walks of life, there are good and there are not-so-good practitioners. That goes for doctors, too. And I believe a person has to be well-informed and take charge of her medical knowledge in order to prevent inadvertent negligence.

I doubt you trust all auto mechanics, computer repair persons, or hair dressers/barbers. Why should we, as patients, trust all doctors? We can’t. Peggikaye has some excellent points above. Just as you have to have some knowledge about your vehicle, computer and what you think your hair dresser should or shouldn’t do, so should we about our doctors.

I very much understand why doctors would be upset with “know-it-all” patients who don’t listen to them. But perhaps the same is happening in reverse. Isn’t half of medical care actually listening to the patient? And what makes doctors think that we are so stupid we can’t learn, too? (Present company excluded, of course.) Just because I chose a different path in life does not mean I can’t study and learn what they learn. Perhaps I know more than many doctors on some subjects. I guarantee Peggikaye and I do on certain subjects, especially when it comes to our bodies and illnesses.

How often do doctors really read the new research and keep up with new diagnosis and treatment options? I believe the answer is “not nearly enough”. That is why the patient has to research and then find a doctor who has or who is willing to learn. That’s what I did. I found a specialist all the way across the country who knew what was wrong with me. I found a PCP who was/is willing to learn. It’s a good combination, but I suffered a lot until I did. And the delay almost cost me my life. Am I angry. You bet. At you, no. At many doctors I saw in the past? Yes. At doctors in general? I don’t know. I don’t know with whom to be angry. Medical schools? The “system”? What? Whom?

What is the answer to the above? I’d love to hear it. I know I’m only seeing it from my side, but no doctor has been willing to share with me from his/her side. I’d like to suggest some posts on that from the doctors on these medical blogs.

(As a sidenote, I have never been disrespectful with any doctor. I have been angry, however. I have never minded paying and always pay what is asked, but I do mind when I don’t get anything for the expense. And that is the difference. I had to learn to be assertive and proactive.)

Respectfully posted.
Robin

P.S. I forgot to mention that I've also thanked the doctors who have helped me. And I've always tried to "pay it forward" with any help I get.

P.P.S The rose picture was taken by my mother. It's a old-timey rose that she has propagated from one her mother had. Her mother propagated it from an ancestor, but I'm not sure which one. It's my favorite rose of all time. Nothing fancy, will grow anywhere, and it signifies the beautiful roots of my family. (I love my family, can you tell?)

Meeee...meeeee...meeeee..........meeeeeeeeeeeeeee

No, I'm not warming up for a choir rehearsal. And you don't want to hear that, anyhow! I'm having a "me" week of posting. Had you noticed? I don't have time to do much research or read the news, so I'm slipping my posts in between events/functions/instruction/etc. And, the most readily available topic is "ME".

I'm out of spoons.* Wednesday truly is hump day for me. I remember when I used to be able to go and go and go...oh wait, that was the energizer bunny. I ran out of spoons right before my class ended today. My "students" (all adults) were getting tickled at me with my words. It was obvious to them I was tired. They were so good about it and we made jokes at my expense. I started the jokes, so they were comfortable egging them on.

No, they have no clue about my journey. Unless they notice the medicalert bracelet on my wrist, they don't even know I deal with a problem other than obesity. But they do sense the times I need support. What is it about people you don't even know who do that? I always seem to get the support I need in groups of people. Maybe I look pitiful, but I don't think so. I hope not!

And what is it about going all the way across the country to meet someone from your home town? Better yet, three someones! Oh wait, one of them had his wife with him. Four someones!! What are the odds?

Well, I just bowed out of a planned dinner with a group of co-workers. When I told them I'd run out of spoons, they didn't get the pun. Oh, well! I thought it was pretty punny myself. (Now, I know you know I'm tired.) But that's ok. They've seen me when I was at my sickest, and they know part of the journey. They understand enough. And they care. That's what counts.

My pillows are calling. Hear them?? Meeee...meeeee...meeeee..........meeeeeeeeeeeeeee.....

*"The Spoon Theory" is an excellent explanation of the life of someone with chronic illness.

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.

---

Speaking of "googling".....

It's not just a proper noun anymore. "Google" is a verb. To google, googling, googled, have googled, will google, am googling....

Google had revolutionized information. Wait, let me rephrase. Google has revolutionized the usage and dissemination of information. Among other things, I teach database programming and design, and I often emphasize to my students how useless information is until it's properly organized and is retrievable in an understandable fashion. This is very true and an axiom that Google's designers took to heart.

Nowhere has Google transformed the huge repository of information collection, dissemination, and organization more than in the health industry. Do you want to save your health information and share it with your health care professionals? Try Google Health. But wait... Is Google good for your health records? My insurance company must think so: Google Health Signs on First Insurance Partner. So does my pharmacy: Walgreens (WAG) Partners with Google (GOOG) Provide Pharmacy Patients Access to Prescription History.

Looking for health resources? Try Google Directory. Or better yet, just "google" your symptoms. Something is sure to pop up. It did for me. That's how I found http://cushings-help.com/ . And it was with the support there that I found doctors who could help me.

Speaking of doctors. Yep, they "google", too. Doctors using Google to diagnose illnesses is an article based in Australia which says:

...a team at the Princess Alexandra Hospital in Brisbane identified 26 difficult diagnostic cases published in the New England Journal of Medicine last year, including obscure conditions such as Cushing's syndrome and Creutzfeldt-Jakob disease.

They selected three to five search terms from each case and did a Google search while blind to the correct diagnoses. Google gives users quick access to more than three billion medical articles.

The researchers then selected and recorded the three diagnoses that were ranked most prominently and appeared to fit the symptoms and signs, and compared the results with the correct diagnoses as published in the journal.

Google searches found the correct diagnosis in 15 (58 per cent) of cases. Respiratory and sleep physician Dr Hangwi Tang, who led the study, said: "Doctors adept at using the internet use Google to help them diagnose difficult cases."

Before you go bashing Australian doctors, you might want to read Googling Medical Topics Returns Decent Results by two US doctors. (Dr. Fink is an emergency physician at St. Barnabas Medical Center in Livingston, NJ. Dr. Miller is an emergency physician at Clara Maass Medical Center in Belleville, NJ.)

And although physicians are secretly Googling difficult medical situations, many aren't thrilled that we're doing the same thing . They have even coined a new term: Cyberchondriacs . I bristle at that a bit. I was asked by a physician one time if I was causing all my problems by "reading too much". I asked her if she had that problem in med school. I made my point.

While the media has made the term demeaning, the Harris Poll thinks otherwise: "Data from other Harris Interactive research show that, increasingly, cyberchondriacs are using the sites of established organizations – academic, governmental, pharmaceutical, etc. – rather than using "pure ehealth" sites."

But back to "Googling"...... Some physicians have bridged the gap between patient "googling" and their own "googling". They are saving time with smarter googling.

"When FP Jeff Pearson in suburban San Diego wants to teach a patient about the characteristics of a suspicious-looking mole during an office visit, he types a phrase like "malignant mole" in a little box on his computer screen, and a click later, an array of images appears."

There is something for all of us when we go "googling". Information is always valuable. There are information Nazis who would prefer to keep it to themselves to dole out at will, but D-day has come for them. Or is that G-day? Health information for all is here, and that includes "googling for all".

I wonder if "google" is now in the dictionary........

Persistence pays.......

I used to invariably expect the best from people, and that included doctors. I used to wear rose-colored glasses. Now, I invariably hope the best but expect the worst. But every now and again I get fooled. Today was one of those days.

After writing that letter, I hung over a steaming pot, took ibuprofen and mucinex, and prayed to the steam gods to loosen my sinuses so I could sleep. The next morning, with the feeling of umpteen hangovers I was wondering when the party ever started. When my phone rang, I contemplated ignoring it, but did pick it up.

"This is [Lulu]. Dr.M wants to know if you can come in this afternoon. She's double-booking just so she can see you. She got your fax."

"What fax?" (Did I send that in my stupor??)

"The fax you sent about your visit to the doctor on Saturday."

"I didn't send a fax."

"Will you hang on a moment?"

As I was "hanging on" it dawned on me. Ah ha! SOMEONE had sent it. I suspected the recipient of the letter who works for customer service in the medical organization to which the urgent care belongs.

She returned. "Yes, well, Dr. M. is talking about you. She said she got the fax and it's about you. Can you come in this afternoon?"

"I'll be there."

I did go, wishing I had a chauffeur so I could close my eyes against the glaring sun. Oh, my pounding head. Dr. M was a dearheart. She apologized mightily for Dr. X's treatment of me and said, "Off the record, we've had a lot of complaints about him." She professed delight in my letter. I hope she wasn't trying to make me feel better. No, I think she really meant it. BTW, I got a big hug from Dr. M to go with it. She does hug....that's good medicine, too.

A shot of rocephin, two prescriptions for 14 days of levaquin and some percocet later, I was off to sell my soul to Walgreens. Since it took 45 minutes, I found a cup of Starbucks and a place to rob wireless internet while I waited. Oh my aching head. (Have I said that already?)

I'm hoping my letter does some good, but I'm doubtful. I was even second-guessing myself after writing it and asked my good friends if I was over-reacting. I asked my parents the same thing. They assured me I wasn't, but that's what chronic illness does. It beats us down to the point we are almost apologizing for being ill, and then when we do react...well, we second-guess our reactions.

I have dreams of educating our local medical profession about my type of illness, but then reality hits when I meet a Dr. X. How do I overcome that God complex? And where do I find the energy? How do I make them read the new research? And frankly, how much time do they really have for that? The Doctor Will See You for Exactly 7 Minutes....


My head is still pounding. I just took a percocet. I hope it helps. Wonder if I should send Dr. X one?

A neverending story....

.....

I really am not a doctor basher. Oh dangit...I don't want to be, anyhow. But I know I'm not the only one who seldom finds a doctor who sees the whole picture. Yes, it's "just" a sinus infection. But it's more than that to me. Here is the letter I wrote today about my experience, with names hidden to protect the not-so-innocent:

I am a patient of Dr. M. This is not about her. However, I did see her on June 13 for a sinus infection which included a very bad headache and sore, painful areas below and above my eyes which worsened when I chewed, plus pain all the way to the back of my head. She did concur and prescribed 5 days of levaquin. Since I had transsphenoidal endoscopic surgery to remove a pituitary adenoma several months ago, a sinus infection is doubly concerning. I have fought sinus infections for years, and use preventative measures. However, I feel I need to be seen by a professional when I can’t get rid of it or control it with no antibiotics.

The levaquin did work for me, but it took about 4 days before my sinuses loosened up enough for a little of the “crud” to start coming out. I went out of town for several days, and returned late yesterday (Friday). My sinuses have closed back up, are very painful, and my terrible headache is back. I thought it would be better to see someone today rather than wait until Monday to try to catch this before it got worse. I felt like, and still feel I did not have a long enough course of antibiotics. I am not trying to play doctor, but I do know how my body acts and am not stupid.

I saw Dr. X at the urgent care on ***** Avenue. I went there because it is also where Dr. M works during the week and thought it would be a continuance of care rather than starting all over. Dr. X said my right sinus was very congested and my left was fairly congested. However, since the levaquin didn't work, he said it had to be viral and I needed to use Flonase. I refused the Flonase and told him I knew I could not use it but could not remember why. He then wanted to put me on sudafed and steriods. I politely refused both telling him I could not take the sudafed due to blood pressure issues and I was already on steroids due to adrenal insufficiency from my pituitary surgery. I am trying to wean off of those, but adrenal insufficiency, especially when magnified by an infection, makes it tough. Well, he was very unfriendly/antagonistic, did not want to listen to my explanation, and told me I could just wait and see Dr. M. I was in tears. I told him the levaquin was starting to work, but I just needed a longer dose, I thought. He said I didn't need to "just be taking antibiotics to see if they might work". I was furious but courteous. I told him that I never "just took antibiotics" and took very few of them compared to most folks. He was not interested in any of my history. He walked out on me! He said, "You can get dressed and leave." I was never discourteous and I did not deserve that type of management.

As for the Flonase, GlaxoSmithCline, Inc. include the following in their studies:

Like any other nasally administered corticosteroid, acute overdosing is unlikely
in view of the total amount of active ingredient present. However, when used
chronically in excessive doses or in conjunction with other corticosteroid
formulations, systemic corticosteroid effects such as hypercorticism and
adrenal suppression may appear. If such changes occur, the dosage of
fluticasone propionate should be discontinued slowly, consistent with accepted
procedures for discontinuation of chronic steroid therapy (see DOSAGE AND
ADMINISTRATION).

(As a sidenote: All the studies of the effects of Flonase on the HPA-axis have been done with “normal” patients, not those with a compromised HPA-axis and/or Cushing’s Disease.)

I do not want to mess with my HPA-axis more than I have to. The repercussions are enormous and obviously not understood by Dr. X. I am already dealing with a tenuous balancing act trying to replace all the hormones lost due to a pituitary adenoma that was not caught for over 20 years. (Thank you, Dr. M for saying “endocrine” to me when I first saw you.) Each of these affects the other, and adrenal insufficiency is just one price I pay if these aren’t balanced properly. I realize this is a lot to understand in one office visit, but he should have treated me with more dignity and understanding. And he could have listened.

GlaxoSmithCline also says that Flonase is contraindicated with viral infections (which Dr. X said I probably had), yet he wanted to put me on it. I am at a loss to explain this, but perhaps would understand if he had taken the time to explain.

To summarize, I am in pain, will have no treatment until Monday when I can reach Dr. M, and I feel Dr. X was out of line.

Metamorphosis

.....

I haven't always been fat. In fact, I haven't always been sick. And since, in my case, those two go hand-in-hand, it's obvious to me that one caused the other. Noooooooooo.....the fat didn't cause the sickness. It's the other way around.

"Yeah, right." I can hear the remarks now. I hear them all the time. On the news, in the grocery store, walking in Wal*mart. I see it in the faces of those I meet and with whom I work. And I am not upset with them. How could they know? My family and friends who have known me for a long time still have a hard time accepting it. Actually, I think my family is relieved there is a medical reason. Me, too!

There is a lot of guilt associated with being overweight. The psychiatrists would tell us that's what drives many to overeat. Compensation. But for those of us who suffer with endocrine maladies which led to the excess weight, it's almost insufferable. Even when we did everything right, we still gained the weight. It has to be my fault, right? The doctors say it is. Of course, it doesn't help when a bariatric surgeon tells you to lose 30 pounds in order to have the surgery just to show commitment. "Man, if I could lose 30 pounds, I wouldn't be here!" But that's another tale for another time.

I was actually pretty cute at one point in my life. Ha! Seriously, though, it is hard to tell when I was first affected by the pituitary tumor which was discovered years later. I know it was always very tough for me to keep the weight off, but with my mother's very wise advise, I did for many years. It always seemed harder for me than for anyone else. I know in my teen years and on into college, the harder I exercised, the more I hurt. I never seemed to be able to push past that and get my muscles "toned" like everyone else. I sure did try, though.

I managed to stay fairly slim during my teen years and into my twenties, although at 5' 2", that wasn't always easy. And with the inherited hips and thighs, even tougher. I remember feeling self-conscious about those. I wish I knew then what I know now. I would have been a lot happier with myself. Funny, I probably am more at ease with my body now than then, although it's not nearly as pretty.

Not realizing for years that I had a pituitary tumor or that it as the cause for many of my mostly ignored health issues, I managed to live an active, healthy lifestyle raising my two daughters, working, and staying active in my community. Although an eventual divorce put us pretty much on our own, I kept up the pace. But it finally caught up with me and I was no longer able to ignore what the doctors assured me was "normal" and I just needed to "eat less and exercise more".

Without getting into the specifics of what was wrong, let me say that I eventually changed tremendously physically even though I fought hard against it. The physical aspects of Cushing's Disease are probably as outwardly devastating as the biological terror that is wreaked within the body. I was virtually unrecognizable to those who hadn't seen me in a while. As you can see, the night before my surgery I was like a pufferfish in a company of guppies. It has been 17 months since that surgery. The surgery didn't fix everything overnight, but it did make my life better. Every day there is change. Every tweak in hormone adjustment brings change. The metamorphosis continues.