Wednesday, December 31, 2008

Happy New Year!

I haven't been feeling up to keeping my blog current, many apologies. ;) I wanted to wish everyone a Happy New Year!

I'm actually doing quite well right now. Have you ever been afraid to say something out loud just in case the world might hear you and everything would go to hell in a handbasket? *ducking*

Right now I am in enrolled in a medical study on heart disease in women with low estrogen and I'm hoping that my participation helps. I also enrolled in the genetic study portion. Do people really refuse that on a regular basis? They seemed delighted that I agreed to join in. ??? I have two daughters and anything I can do to help resolve this mystery medical nightmare is a "good thing".

Have a happy and safe New Year!

Sunday, October 26, 2008

Martha's Story

The Cushing's community recently lost Martha. In her honor, please read a post about Martha at Robin's blog. Much love and heartfelt sorrow for her partner Stacey during this difficult time. (((((Stacey)))))

Friday, October 17, 2008

Aspirin Allergy

I just looked at the clock and wondered: "Why am I up so late? Arg! Why, why... oh. I took 30mg of hydrocortisone today. That's why." Oops.

It started out innocently enough. My youngest daughter loves to cook with me, and baking? Even better!

We made a blueberry pie yesterday. Well, we intended to make a blueberry pie. If you don't add enough sugar to the blueberries, guess what you get? More like, a blueberry tart.

Guess who loved to bake *blueberry tart*, but didn't like to eat any? That would be my youngest daughter. So Momma ate some. Then some more, because tart or not, it was good. :)~

I couldn't figure out why my face was so red and felt sunburnt last night. It was sooo weird.

I woke up this morning with a face *so swollen* there were actual creases between my eyes and my nose. My cheeks were chipmunked out and it was hard to see out of those slits for eyes. ACK!

Benadryl only made me pass out and drool. Claritin didn't do much. Then my lungs started getting wheezy, so I went straight for the steroids.

I must say, nothing will put you off going to the ED or Urgent Care like having a 4 year old in tow. I think that could resolve ED *over-crowding* in one fell swoop. Just hand over a 4 year old that needs to be entertained and, most importantly you must answer every question they have to their complete satisfaction while you wait. Ha!

The hydrocortisone worked a bit, mostly stopped the wheezing that I was most worried about. [I have an epi-pen, so I wasn't completely crazed by staying home. ;)]

What on earth does this have to do with *aspirin*? Well, my dears, aspirin is a naturally occurring substance and if you are allergic to aspirin? Most likely, you'll have a reaction if you touch or eat:

fruit juice
fruit-flavored drinks
wine, rum, port or liquers
olive oil, peanut oil or sesame oil
tomato paste
spices, vinegar, mustard
honey, jam, liquorice, mints
almonds, water chestnuts
nuts, seeds
sweet potato

You can have:
peeled pears
bamboo shoots
white peeled "new" potatoes
poppy seeds
maple syrup
white sugar
sea salt
garlic (whole, peeled)
decaf coffee
soy milk
homemade pear juice
butter, margarine, canola oils
gin, whisky, vodka

Just a public service announcement.

Time to take some sleeping pills. And my pupils are this.big.

Tuesday, October 14, 2008

"But I Am Not That Smart"

The new specialist mentioned that during my appointment in August. He was referring to rare diseases or complicated ones, I suppose.

Is that a heartening statement? I implore you; if you wield any power in your life over people that need your services, do not say that to a client. Especially one that will be billed regardless of your capacity for thought. Egads. For goodness sakes, you are billed as a research scientist and scholar.

So, I did manage to make it two months hormone-free and finally went to the lab for some blood tests.

TSH elevated, T4 low ~ secondary hypothyroidism still there

low Estradiol, LH and FSH ~ hypogonadism persists

8am cortisol & ACTH normal ~ woohoo! but without midnight serum & salivary results. I don't want to waste time doing any tests until there is some sort of agreement on what a "valid testing procedure" entails.

fasting insulin level is high ~ 20uU/mL on a range of 0-17

DHEA is low *insert adrenal mumbo jumbo*

RCDW high ~ ?

IPTH is high 80 on a range of 10 to 65, with 45 being a commonly considered high result for people under the age of 60 but a useless result in some senses since the Calcium level is currently pending

Bicarbonate is my only low electrolyte result, which is common for me.

All of that means... absolutely nothing to me! ;) Ok, it probably means something to someone somewhere.

I am not sure which way to go. One of my specialists better start coughing up answers, or handing out more lab slips, or Googling for me, or something...

Once again, it points towards something genetic, endocrine and usually an autosomal dominant trait. Which scares the beejeesus out of me, with two small children.

Saturday, September 06, 2008


I had some major oral surgery this past Wednesday afternoon. After years, I'll finally admit to it. One of the loveliest and most embarrassing side effects of chronic overexposure to steroids? Tooth loss.

I am a chronic flosser and brusher, so I really can only attribute the demise of one, or *maybe* two, teeth to personal neglect. The loss of 14 others, all molars, I'm not sure who to thank. Osteoporosis? My teeth look fine, then break off at the gumline with no warning. Such beauty. *rolleyes* I cannot have implants due to bone issues, so partials will be ordered when my gums calm down.

Something strange happened after this surgery. It has happened before after my pituitary surgeries, but I explained it off as a sort of post-op *reset* to my system.

Less than 12 hours after the oral surgery, iv sedated then minus 5 teeth, I felt GREAT. Not good, but really great. I dropped 10 pounds of water. My feet stopped hurting. Lots of energy and I'm in a great mood. The only thing I need for pain, if at all, is Aleve (like usual).

WHAT ON EARTH IS THIS FRESH HELL? I thought I knew why this has happened previously, but now I don't have a clue.

I'm not smart enough to put it all together, but it does have me wondering what elective surgery I can sign up for in order to have a *real* scheduled vacation. A guarantee of feeing awesome?! WOW. What can we cut off next? =:)

I wish there was a supah-schmart medic that could piece this together for me. What does IV sedation, which all of these have in common, do for my system?

Is this a vasopressin situation? Side affect of an unknown Aldosterone antagonist? (my aldosterone measures super low)

I am stumped.

Monday, August 25, 2008


I don't see how they think that hormones "enhance" Cushing's levels, because it seems the opposite for me.

I am back to how I felt before I ever knew "Cushing's Disease".

Eight days without estradiol, testosterone and both thyroid meds and I am on a Cushing's high from h-e-double-l. Yikes!

I'm greasy, acne'd, can't sleep, super energy at night, OCD, heartburn from hell, weight fluctuating up to 10 pounds in a single day, sprouting hair everywhere (TMI)... fah-reak! Good grief.

The only up side to all of this is that I have some energy from the high. I've de-cluttered the entire house, ordered a dumpster, filled it, and did all of the laundry in the past three days. Any single one of those things would have been impossible for me 9 days ago. Good heavens.


Three more weeks without hormones before they hospitalize and do 48 hours of tests. Threeee weeeeeks. It seems like forever from now. Time used to pass by in a flash. Not so much right now. Like when you were a kid and the days seemed to be a lifetime and there was no way that Christmas would ever get here.

Thursday, August 14, 2008

Here we go again

I'm still crying from my appointment this morning. A new specialist on my new insurance.

I think I hate 99% of these specialists. Maybe it is just Cushing's specialists that act like this? Each one of them thinks that they have the proper testing protocol and anything but what they do - exactly as they do it - doesn't count. So, all of my sky high results from the tests I did in April? In the trash.

I've been through this before. And to some extent I understand it. But I am very fragile right now, and I could do without the drama and starting from scratch.

Let me give you an example of what I am saying:

Dr. X in OopaLoopaVille believes that midnight serum blood draws are the "it" thing for diagnosis. But he also thinks that they have to be done with central line placed, an IV line threaded to your heart. He doesn't care how many highs test results you have from going to the ER for midnight blood draws, they don't count to him and those results go right into the trash. Now mind you, I'd have to drive to the hospital for them to draw my midnight blood labs - but out of the central line IV.

Dr. Y in Rainbow City thinks that this central line stuff is a bunch of hooey, and exposes immune-system-compromised people to infection and is just a bunch of crap. He wants to you to go to your local ER at midnight and get your blood drawn with a needle stick. He doesn't think that being stuck with a needle affects your cortisol levels to the extent that you would get a false positive.

NOW TODAY, the Dr. Z of Smitzville says all of the sky high lab results I worked so hard to get, from April, are crap. Throw them in the trash. He thinks that driving to the ER at night throws off your levels and that none of those results are worth the paper they are written on. He also thinks that you cannot take any hormones of any sort while you are testing, because it'll give you false positive results. So, to test with him I need to stop taking thyroid, DHEA, testosterone and estrogen - and I am already not taking the growth hormone. I have to be off all of those for ONE MONTH then he'll admit me to the hospital to run tests. No mention of whether it'll be a central IV line (to the heart), a regular IV line, or just regular blood draws.

Are we slicing some mighty fine hairs here? And does everyone on hormone replacement have some sort of pseudo-cushing's disease?

What I have found consistently over the years is that 99% of these specialists are SO FREAKING COMPETITIVE that they just rejoice at the chance to trash the others' methods.

I hate it, I hate it, I hate it.

Oh, and he DID NOT tell me that 2 pit surgeries were a mistake for me to have done. Has he ever had a three year headache and double vision??? Even if it didn't kill the source, I especially NEEDED that first surgery. The second surgery, well - the tumors showed right on the scan, all of the evidence was in, it seemed like the right thing to do to all parties involved. Mistake? Probably not. I've regained ACTH and have not lost any additional anterior hormones.

I'm so emotionally fragile when it comes to being tossed around and torn down over these minute differences in testing protocol. I broke down and cried like a baby.

I'M SICK. Dammit. Fix me.

I'm going to play along with the rules du jour. I'm marking the calendar for the 1 month free of hormones and we'll go from there.

Mark my words, not only did I have the tumors that have been removed from my pituitary - but my adrenals have their own issues. I've been showing symptoms of Cushing's Disease since the age of TWO. Who grows a pituitary tumor at TWO YEARS OLD, yet not grow to massive proportions by age 36?

I have a friend with two daughters having a form of Carney Complex/Cushing's Disease; it is called iMAD. Both had diseased adrenal glands with pigmentation. The older daughter also has a pituitary tumor. Her doctor is saying that the pituitary tumor doesn't mean anything.

On my side of the equation, I have symptoms of Primary Pigmented Nodular Adrenal Disease. But I had a pituitary tumor, so the PPNAD symptoms don't mean anything.

It's a crazy, freaky world let me tell you.

I am sooo tempted to bypass all of the "cover my ass so I won't get sued" CRAP I have to go through to prove again, and again, and again, and again that I HAVE CUSHING'S DISEASE. Do you think I could pay cash in India or Mexico to have my adrenals out? It'd be worth it at this point. I am so done with this guinea pig stuff.


What other disease in the world makes you go through SO MUCH for a cure? I can't think of one. Can you imagine if diabetes was diagnosed the same way?

"It only counts if you eat two apples, standing on your head, then test glucose levels with a finger stick of your left pinky finger."

"No, no, no! You need to not eat any apples for a month, then lay upside down with a fork in your neck and test glucose levels at 1:23pm global-adjusted time."

"Oh, you have it ALL WRONG. Eat thirty pounds of angel food cake, three diet cokes then go to the lab at 8am. They'll jab you with a 10 gauge needle in your RIGHT pinky finger. At a 20 degree angle."

Repeat the above over and over, until all of your toes fall off from gangrene and the new dialysis clinic can fit you in.

Friday, August 08, 2008

Veteran Patient Gripes

A long, long time ago I used to date a doctor. Now, I know that he has this blog address and so does my husband, who are not one and the same, so I won't divulge more info than that. It was the first shocking revelation when he admitted to me that he sometimes dreaded seeing his patients. The second shocking revelation was that one time he met an 80 year old patient with perfect (and preserved?) breasts. None of those tidbits made me think any less of him, but they intrigued me.

Before then, I hadn't thought one way or another about how doctors feel about their patients, or that they would notice something about them other than being a patient. Of course, that was very naive.

During my second pregnancy I knew something was quite not right with me. During my extended tour of bedrest I searched for answers. I hadn't found blogs yet, but discovered an old listserv archive with many writings from a doctor formatted in a Q&A style.

At some point during my long and ongoing illness it occurred to me that it might be a fault of my own for not getting answers for my ailment. Maybe I wasn't communicating properly? In the end, I found medical blogs and plenty of information on how NOT to approach doctors. It was eye-opening. I quickly learned that nurses, doctors and even pharmacists are greatly annoyed with their clients. Some of the posts were vicious and full of hatred, even. I made it my priority to see things from their side of the equation, with the hopes of better rapport & problem-solving my illness with my doctors and their staff.

But I haven't really seen a patient's perspective laid out bare. As a frequent-flyer in the medical community I have lots to share. :)

~ Impromptu GYN exams are not a welcome surprise. During a visit to a new 'specialist' a discussion of my odd pigmentation came up. I have weird pigment spots all over my body, mostly concentrated to my lips, eyelids, ears and a whole rash of them around my genital area. It never crossed my mind that I'd be asked to drop my pants and show them on the spot. Uh, traumatized? Table for one! YIKES.

~ Either you want me to be smart, or you don't. I always have problems talking to doctors. My mind goes so fast sometimes that I can't put my thoughts together. Intelligence of the rambling sort doesn't mean I am dumb or that I am trying to be annoying. I have resorted to writing a checklist to refer to during our visit. I'm also afraid of annoying you with my lists. Sorry.

~ Know when you are out of your realm. One time I got into a stand-up, fists clenched argument with an "Endocrinologist" that didn't understand the nuances of secondary hypothyroididm. "Those ranges are there for a reason! That's why we use them!", said he as he angrily poked his finger at the lab results sheet. Uh, said I; "Those ranges are there for reference on the common form of the disease hypothyroidism. Central Hypothyroidism requires careful interpretation of the entire set of results. Hormones work on a feedback system and are influenced by one another as they are a feedback system, not just standalone entities. If you exam them carefully it'll show you the source of the deficiency. Do you want to interpret the nuances of a complex hormonal system, or just be an accountant? Because then maybe Diabetes might be your forte." {He was fired, from me. Gladly I'm sure :)~]

~ I have small children at home, so if they aren't with me I don't mind waiting when you are late seeing patients because no one is screaming or climbing on me. No apologies necessary. And I don't even need a magazine, the quiet white room with the reclined exam bed will do just fine for some r&r. I have the baby sitter a few more hours, do you want to skip me and catch up on some other patients first? :)

~ I don't want to tell you what pain meds I have taken in the past. I know that Fentanyl, Fioricet and Percocet et al raise your eyebrows. Personally, I enjoy being able to poop. Trust that I won't ask for narcotics unless I really do need them.

~ As a chronic patient, I know that my history is long and confusing. I prefer you ask me what those weird meds are that I take, because I might not be taking them for what you think they are for. Cytomel is an odd little thyroid drug and not prescribed often, Ketoconazole is an anti-fungal but also shuts down your adrenal system, DHEA replacement is sometimes necessary when your adrenals don't work right. The Topamax I used to take for migraines and seizures, but if I could stand the tingling fingers and being dumb as a rock, I'd hop back onto it so I can fit into a smaller size. The effortless weightloss was awesome.

I have so many symptoms and so many meds, heck it is hard to know what symptoms are even relevant. I'm not playing games and hiding any of them, I swear. Lead me with some questions if you suspect something. I have symptoms that don't even register with me, kinda like how I keep forgetting to have those cataracts checked ~ time flies when you are sick ~ or why I haven't followed up on my high urinary protein levels. I have bigger fish to fry while I try to stamp out the source of my excessive cortisol production. If I don't keep on track and get the underlying source fixed, we can both sit back and be amazed at how much more can go terribly wrong.

~ Don't prescribe Effexor unless you have to. Just throw those damn 'free' samples away because it is impossible to get off of that stuff, Which is somewhat of the point from Wyeth's marketing point of view. Yes, I take Effexor but only because I can't stop taking the damn stuff and weaning is a joke when you have two small kids and an absent husband... unless you like walking around with waves of electric shocks in your head and feeling the whole room spin when you barely move your eyes. Consider the long-term impact, people. Can I go to rehab for Effexor? Because I might need to. That panicky feeling they were medicating was resolved on proper thyroid medication. *rolleyes* All I can say is while I am stuck on 150mg XR is that I am really, really not depressed. ;) Just apathetic, which is not the same thing.

~ I managed to gain 75 pounds in one year. Giving me advice on exercise isn't going to help. My body is hurting and tired for a reason. My feet hurt to the point of tears, all of my joints hurt sporadically & spontaneously and I fight like crazy to stay awake between the hours of 11am and 2pm. My body is desperately trying to get someone to listen, or at least force me off my feet to rest. No one in their right mind can gain 75 pounds in a YEAR. I can't imagine what I'd have to eat to pull that off, like DUDE, on purpose. I feel tired and weak because I am. My husband broke my sternum just giving me a hug for heaven's sakes. Two days ago I stood up from the couch and broke a rib. *faint* I wonder what a trip to the gym could really do for me.

~ Don't like the health insurance system? Then break out on your own and go back to being a physician.

That is what my favorite doctor does. I pay him, he gives me a 'superbill' to submit to my insurance company. I am fine with that. I don't want $10 co-pay visits. I want results with someone that focuses on their practice and not the billing. I'd like to communicate follow-ups via email. It's no problem for us, as it is included in his initial fee - and if we need more followup emails, I'm happy to pay to further our discussion to make a plan of action. That's what I need.

Maybe adopting this type of service, upfront, and patient self-reimbursement would lighten up the moods out there, because it seems to me that doctoring isn't as happy and gratifying as it used to be. That makes me sad. Not that my thoughts matter on the whole, but because I know that you went to school, med school and survived residency and deserve to do what you do well without a heap of crap piled on it.

Tuesday, August 05, 2008

The Usual Dilemna

Ow, ow, ow.

I went to stand up from the couch tonight and something happened. A huge heart-dropping *CRUNCH* in my back. Sounded like a few upper vertebra.

It hurts, more chest pressure/pain from coming around from the back area. *shrug* Do I have it looked at? And by whom? And how long can this go?

The longer you are exposed to high levels of steroids the more likely you can break ribs & vertebra by normal movement. A few years ago my husband broke my sternum by giving me a hug. >:o By the looks of the stretchmarks ripping up my underarms and breasts lately, I'm hypercortisol'ing. I hope I am wrong.

I wonder if Scalpy or GruntDoc are working tonight? LOL I'd be a favorite pt to see, for sure. ;)

*edited to add*

Yup, it's a broken riblet ~ right next to the spine. Niiiiice. And a UTI to add insult to inury. I do love my local Urgent Care docs, they always take good care of me :)

Friday, July 04, 2008

Not dead yet!

A recent anonymous comment asking if I was dead has me stopping by...

No, not dead yet. ;)

I'm at a weird low point right now and don't have much to say to anyone. Yes, the Cushing's is back - err, never left or who the hell knows. I'm not feeling confident about the chances for a forever-cure in my future. I guess that might shut up anyone. ;)

A few months ago a fellow-Cushing's patient passed away. She was my age, has children the same ages as mine, had all of the same surgeries as I have had. She never seemed to recover after her bilateral adrenalectomy, didn't feel well and laid down on the couch after reading her children a bedtime story. She never woke up. :(

The cardiac aspect of Cushing's is terrifying. You putt along for twenty-some years to get a diagnosis and then grind out a slow path getting sliced & diced. Every scheduling takes 3 weeks or more, every blood test, 24 hour urine collection, picc lines, trips to the local ER lab at midnight for bloodwork, chewing on cotton swabs for salivary levels... all tests and procedures to get to the end, to the goal of a successful cure. All of that snail's pace progression is outmatched by the horror the disease wrecks on your body. A snowball of morbid medical decline picking up speed [severe cardiovascular damage, bone loss, muscle wasting, disfigurement, and have I mentioned cardiac?] . While doctor after doctor carefully dots their i's and the never ending tests and waiting for the results, then back to square one. It all tosses in roadblocks that cost days, weeks, month and makes for years of delay. Five abnormal/diagnostic value test values are not enough, and one normal result can outweigh them all in a single bound. You need a chart to keep track of the myriad of results and the algorithm is always changing.

The news of Natalie's death broke my heart. And also the sweetest woman I have ever met; SuziQ, who we lost a few years ago stemming from decades of Cushing's damage.

I'm still convinced that I have PPNAD [primary pigmented adrenal disease] or something similar. Of course the last case scenario cureall for Cushing's, for me at this point, and for PPNAD are one and the same. Bilateral adrenalectomy. Put'em in a jar.

It is too bad my last extension of COBRA insurance ran out in May. I finished testing to prove that the recurrence (or never-cured) remains to be dealt with. *POOF* Endgame. Uninsurable. High risk insurance pool only covers 70k. My pituitary can poop bigger than 70k!

Now I am one of those people. The uninsured. The chronically ill. The unemployed and too apathetic to bother hiring a lawyer to go after my 5+ years off work with Social Security.

Apathy. Yes apathetic, I think that is where I am.

Even if I get to have a BLA, even if we force a cure, even if I end up on every hormone pill/patch/shot or gel in the world. Well, who says I won't lay down to rest and die? :( :( Poor Natalie. Poor Natalie's children and husband.

I suppose if I find a chance to get a shot at it; I'll do it.

But only if they promise not to touch my freaking nose. Egads. If I had known what I know now, post-op pituitary x2, I'd have asked them to put down the specialized endoscope and just cut through over my eyebrow. Or something, anything. Just leave my sinuses out of it, for heaven's sakes. Good grief I don't care about scars anymore. I did appreciate having my impromptu nose job during the last operation ~~~wheee~~~ all deviation is gone and my schnoz is straight as can be. But the misery of sinus complications just goes on and on. Spinal leak, Bacterial infection, scab hunks falling out in chunks out of my nose (from the surgery site), then a flourishing fungal infection just ties it all up like a neat bow on a Xmas present. Ew. Phhhhhhfffft.

I'm managing to get along, in the meantime, while I sit calmly in limbo. I've slimmed down my medications. No growth hormone, I don't know what the precise mechanisms are but I did gain energy but on the downside; 45lb very rapid weight gain and arthritis pain to boot. I can't afford growth hormone shots anyhow, as I am one of those people. The uninsured. The chronically ill. The apathetic. And unemployable. You know.

That's about all there is here. And since I cannot cure myself; despite years of research and medical community involvement -- with the best doctors -- I just feel as though even if I have a say; it is not a contribution. More likely a liability. Could you continue to encourage & guide other people to seek treatment of a disease you cannot cure for your own self? I can't.

Encouraging doctors to learn about this crazy disease and to know it when they see it, or at least retain a high index of suspicion? I always have time for that.

If you sense some silence and want to know the score, just cough or something and I'll check my pulse, m'ky? :)

Tuesday, April 08, 2008

I wonder if he wonders why

I spoke to my general doctor tonight about my CSF leak test results and headaches. The test came back clear, but it is likely that I periodically leak if I am too active, blow my nose too hard, if the wind blows in the wrong direction, or if my husband pisses me off. [I could be kidding about one of those.]

We talked about his septum surgery, neti pots, saline rinses, nose-blowing, kids. I love my doctor. :) He mostly sees Veterans at his clinic and I really appreciate him. I hope he knows it.

Oops, where was I?

Oh yeah! At some point I had to confess that I had thought about the potential for a leak and decided that no matter what the results, I do not want or need any additional surgery in that area of my body ever again. So I'll live with it, try to take it easy and have it heal up on its own.

He asked me if I wanted any pain meds. I hmm'd and haww'd because, dammit, it really does hurt. My headache, that is. You know you are not an addict when: the thought of opioid-induced constipation makes you come to your senses and say, "Uh, no. That's ok."

He either thinks I am a pain loving super freaking hero, or that I am stupid. One of those. ;)

Happy National Cushing's Disease Awareness Day

Today is National Cushing's Awareness Day.

I asked a few local papers (ok, is LA considered "local"? ) to do an article about Cushing's. Long story short, only one Cushing's article in the entire USA, that I can find.

Regardless, in doing my search I found an article about a new veterinarian in-house lab machine that will do endocrinology tests while the patients wait.

MEANWHILE, I had my post-op gallon of blood drawn on Saturday. It is Tuesday and I am checking my online fax account for the results umpteen times a day.

Allow me to repeat this, because I do not have enough swear words in my vocabulary:

I give up. I give up. I give up.

I'm going to schedule an appointment with a veterinarian. Canine cushing's disease: They get all the press, no one doubts them and now they can get their results in the office. WTF???

Friday, March 21, 2008

I'm a big weaner

I've managed to wean from 60mg of hydrocortisone to 5mg in less than 7 days! Yay! Yippee. Actually I think I could have skipped the 5mg today, but I took it just for the hell of it. One tiny ping in my adrenals and I dropped 5mg, you know, just in case.

Ok, honestly? That isn't good news in the Cushing's world. My body shouldn't be able to compensate for that rapid of a drop in steroids in such a short time. I suppose it means that the source of my Cushing's is finding a way to come back to life. *fingers in ears* LA LA LA LA LA

I saw my primary doctor's assistant today to see if they could order a radiological test to find the source of my leaky brain. They were pretty stumped. I don't want to bug them, but they haven't called me yet. They said they would. I'm afraid he'll drop me as a patient if I keep 'coming down' with questions and problems that they can't deal with. I really like him and his staff; I try to send them goodies for the office whenever they help me through situations like the one I am dealing with. He must really like people with strep or UTIs after my visits. ;)

I made an appointment with an ENT surgeon for Monday, just to cover my bases. Once again, I hope I don't scare the bejeezus out of him and have him send me packing. It was already suggested that I go back to Houston for the leak repair. No. Freaking. Way. is my non-verbalized response.

I know a neurosurgeon in Los Angeles, but I don't think a neurosurgeon is needed for this - more an ENT problem. I think. I don't know. Which brings me to my most recent thought: wouldn't it be nice to just have NORMAL PROBLEMS? How about that osteoarthritis I have in all of my left-side joints. Couldn't that be my only cross to bear? Wouldn't that be nice?!? I try not to talk about my medical issues out loud to normal people any more. I scare them. *ducking*

Wednesday, March 19, 2008

I've had it. Up to my neck, err - brain.

My brain is still leaking. Dammit.

"My brain is leaking! My brain is leaking!"

Friday will mark four weeks since surgery and I am spitting mad that they didn't believe me when I told them I had a leak at the hospital. Sorry, dear city of Houston, I don't think we have a future together. We don't seem to mesh well. ;)

I've tried laying flat on my back every night when I sleep and it isn't helping. Can I just say I deserve a medal for even sleeping like that for one night, let alone four or five? Yes, I do. I've had to resort to sleeping on the couch so that the width of sleeping area discourages my sleeping self from turning.

I'm trying to arrange for the radiological tests to determine the exact location of the drip, and have an appointment with an ENT/surgeon on Monday. There is no way I am going under without them knowing exactly where to stick in a plug. *sigh*

I started the daily growth hormone shots seven days ago. It is really starting to help. Now I can almost actually lift my feet when I walk. Yeehaw!

I'm making an effort to get off of the steroids so that I can start testing again soon. I managed to drop from 60mg of cortef to 20mg in less than five days. *blowing on knuckles, rubbing on chest* Holy wean, Batman! :)

Sunday, March 02, 2008

Life Is But A Dream, Sweetheart

I've had a perfect weekend, and perfect day today. Everything is going so well that I am afraid I'm going to die in my sleep tonight. *blink* Just kidding!

Husband came home last night and cleaned the whole house! He mopped and did other stuff I can't do right now. :)

My mother-in-law came over this morning and watched the girls while I napped. Then our babysitter came over this afternoon and I went out to do my stockpiling. I know I should rest, but honestly being home listening to screeching children tends to be more stressful to me.

I cleaned up at CVS and Ralphs, with free razors and toothpaste and I found lint rollers for freeeeee (after the coupons I happened to have on me) on clearance at Ralphs. My second trip to the grocery store did me in though, as I forgot to get the rabbits their food and veggies and I started bleeding out of my nose. Oopsy. Ok, ok, ok - I'll slow down.

I'm just afraid that this "feeling good" won't last and I want to spend every minute "doing" and "going", because it has been so long since I could. I'll rest tomorrow.

My growth hormone starter kit should be here tomorrow or the next day. I can't wait to start!

Life is rolling along!

Friday, February 29, 2008

Back from MD Anderson

Surgery went well. 

I'm home now, resting in bed. Physically I feel much better than before surgery. I can walk and go upstairs with ease. I feel very well except the head hurting. 

With Cushing's Disease it is not necessarily good news to feel so wonderful post-op, but I am taking it as confirmation that I can't take my six week reprieve from Cushing's lightly. The last time I had surgery I had a wonderful 6 weeks of feeling great, so I am presuming the same this time.

Shame on me for coming here with great news and turning it towards the bad, but I am going to get off of hydrocortisone as quickly as I can and get to testing my adrenals. I still suspect Primary Pigmented Adrenal glands or abnormal hormone receptors in the adrenals .

I still needed this surgery very badly, as the surgeon (who ROCKS, btw) found a pre-existing CSF leak in the sella area. IMCC couldn't find the exact "hole" so he used a liberal amount of "brain spackle" to seal it up. There was a whiteish lesion on the left side of the pituitary and he removed a lobe because it looked funny. The leak makes sense, or lack thereof now, because my ears no longer ring 24/7 and my left ear has stopping hurting. Pathology returned as normal, like last time. He doesn't know what the lesion was, but I am glad to be rid of it.

My 3 day post op numbers were excellent: 4.5 cortisol and ACTH at the bottom of range

After they removed the nasal packing I had some sort of leak, but with the brain spackle they say it is isn't possible for it to have been from inside the pituitary area. Laying flat helped, taking Aleve helped get my pain down & wits back.

Quite a few of us Cushing's patients have had problems with the nursing staff on the Brain & Spine floor.  I want to band together and write a letter reaching out to the Pain Specialist department and see if they will work in conjunction with IMCC's office to take pain management out of the nursing staff's hands for the first two days after surgery. We have to do this so that future Cushie's don't suffer what we have been through.

If I were given the option of living through those first two days again, or death - I'd ask for stationary. Because I need to write some letters before I go. It was that bad.

For Cushing's there is a hormonal interaction aspect with pain management and I believe we may have to step up for Cushing's at MDA, since their expertise is cancer. I want any one that goes to IMCC, such an excellent surgeon, to not have to encounter difficulties in the post-op period.

Anyone that makes me cry for 8 hours, laying flat with my mouth open and tears streaming out of the corners of my eyes, and makes my father cry with me usually gets special attention in the letter department. This time, however, an intervention & new alliance between the Pain Specialist & future Cushie patients may have the best impact.

The pain issue goes beyond your average nurse and hospital stay problems, I feel. I think that having Cushing's our incredibly jacked up hormonal system creates problems that cannot be anticipated. I have researched the underlying reasons for this previous, finding that the precursor hormone to ACTH also makes peptides that are involved in beta-endorphins.


Right after surgery I would have to expect that our pituitary is "shocked" at the insult of being toyed with and that ACTH is low or none; of course being low due too a lack of the precursor hormone:

"The major attributes of the hormones other than ACTH that are produced in this process are summarized as follows:

Lipotropin: Originally described as having weak lipolytic effects, its major importance is as the precursor to beta-endorphin.

Beta-endorphin and Met-enkephalin: Opioid peptides with pain-alleviation and euphoric effects.

Melanocyte-stimulating hormone (MSH): Known to control melanin pigmentation in the skin of most vertebrates."

To me, it makes sense like nuts and bolts, if you keep throwing nuts at a problem it won't fix if you do not have any bolts to hold them. Am I making sense? I'm trying to say that people enduring pituitary surgery need specialized management for their pain. This should be recognized and dealt with by removing nurses from the decision role in immediate post-op pain management. 

And the nurses. Arg. They wouldn't even let me talk to a pain specialist OR the neurosurgeon on call, I begged them. I had to call the hospital and have him paged to call ME directly. Then everything changed. It was a complete blockage by the nurses. And they just kept closing my door so no one could see me in there crying. Nice. Real nice.

When the doctor got ahold of them, after our conversation - if you call weeping silently and barely managing to speak a conversation - the nurses were reamed for a few hours. Yowza! They came to me and yelled at me for calling the doctor. "You do not call the doctor directly!" and "How did you get his number?". *"Uh, because I am smarter than you are - bitch. Ding. Ding. Ding." After interrogation, I ended up crying out like Richard Gere in "An Officer And a Gentleman", with spittle and tears and raw emotion: "That's not my problem! That's not my problem!"

I know they felt that I was extra whiny. Extra dramatic. But in reality Cushing's Disease calls out for special monitoring and treatment by qualified medical doctors that can treat us.

I got the diladid pump after I managed to see the Pain Specialist, but it made me retain my urine. They refused to put a catheter back in, but also yelled at me for being up (to attempt to go pee) because I was pouring fluid out of my nose (and I did the halo test on a paper towel - very positive). I would have to get up every hour, go and sit & sit & sit forever on the potty and could NOT go. I also had an IV drip going, which added to the urine that was accumulating. Thank heavens for a friend that called the charge nurse for me. My regular nurse refused to check my bladder with a scan, she insisted that I wait another 6 or 8 hours!!! The charge nurse made her do it, and when it showed urine, the nurse did a straight catheter. A whole liter came out. !!! Even then I wasn't empty, I could tell.

My surgeon's assistant took me off of the diluadid pump and put me on Norco. By that time the pain wasn't as SEVERE as it had been, that spike going through my left eye like it had been before, so I was ok with it. They showed up every 6 hours to give me the Norco no problem. When I found out that I was getting out the next day, and after my mandatory lay flat day, I got up and took Aleve without telling the nurses. I was too scared of them to take it without telling them previously, but by then I didn't care. Aleve took away 100% of my pain, go figure.

Anyhow, back to bed for me. My head hurts, but in a good "healing" sort of way. :)

Saturday, February 16, 2008

Here we go again

I'm off to Texas this coming week for a second surgery. This surgeon is more "aggressive" than the first one and I expect that he'll remove half of my pituitary gland. I'm a bit nervous, but like most things medical I try to keep myself from thinking about it until it comes time.

My specialist prescribed Ketoconazole to halt my overworking adrenal glands, I flunked the growth hormone stimulation test, and I have cataracts on both eyes. I'll be happy to be off of the Ketoconazole and replacement steroids. Thyroid tests showed that T4 to T3 conversion isn't working, so there are two meds for thyroid replacement now. I'm a bit insulted that my thyroid has decided to gang up on me, on top of the panhypopituitarism.

Pfizer is working to get the growth hormone meds approved and I can't wait to start on it. So far the diabetes insipidus symptoms are somewhat manageable without medication, and I hopeit stays that way. I'm realllly sick of the constant pee breaks. If you have to think of where the bathrooms are before you make a trip to buy groceries or take your kids to the park, and you aren't pregnant, you have problems. Walking is difficult and I always wonder if I'll get shot looks for being lazy if I were to grab a motorized chair in the stores. I haven't done it yet. I'm too chicken. Instead I plod along and sweat through my clothes, my hair soaked. I don't know why I care more about what people think than how I feel.

Regarding surgery: If the tumor wasn't right up against the ICA and showing on my field vision tests, then I'd prefer a good ol' Bilateral Adrenalectomy. *sigh* Maybe radiation and a BLA are in my future, but not just yet.