Friday, May 25, 2012

Cushings Disease?

This page is under construction, more information will be added, rearranged, consolidated, and edited as I have the time to do so...

Uncontrolled Cushing’s syndrome is among the most morbid and life-threatening diseases. 

Daniel M. Prevedello, MD,  Department of Neurosurgery at the University of Pittsburgh School of Medicine and with UPMC Presbyterian.


One of the health problems I'm being tested for is called Cushing's Disease.  Cushings Disease is part of the greater Cushing's Syndrome, which is usually caused by taking steroid medications and afflicts roughly 10-15/million.  I don't take any form of steroid, but my endocrinologist felt that I had enough signs and symptoms that we needed to rule it our.  Cushings Disease is usually caused by a benign tumor on your pituitary that increases your body's natural steroid production and it occurs in roughly 1-2/million.  Three of the tests for this, a 24 hour Urinary Free Cortisol (UFC) and 2 8am serum free cortisols, have come back high and are indicative of the over-production of cortisol Cushings causes.  I have 2 more 24 hr UFC's pending and one of 3 salivary cortisols still needing to be completed (tonight!) before I send those back.  None of them appear to be crazy high, but they are out of range and atleast "agreeing" with eachother, so if more of these tests come back high I will likely be diagnosed with Cushing's Disease. 

What is Cushing's Disease?

"Cushing's syndrome is a hormonal disorder caused by high levels of cortisol in the body. Cortisol is a hormone made in the adrenal glands that performs vital tasks such as regulating the metabolism of proteins, carbohydrates, and fats.
However, too much cortisol in the body can lead to such problems as:
  • Diabetes
  • Obesity
  • Depression
  • Cognitive dysfunction
  • Cushingoid appearance
  • Skin changes
  • Severe fatigue
  • Weak muscles
The production of cortisol typically follows a specific chain of events:
  1. First, a part of the brain called the hypothalamus sends corticotropin-releasing hormone (CRH) to the pituitary gland, which is located at the base of the brain.
  2. The pituitary gland then secretes another hormone called adrenocorticotropin hormone (ACTH).
  3. ACTH stimulates the adrenal glands, which are located on top of the kidneys, to release cortisol into the bloodstream.
  4. When there is an adequate amount of cortisol in the blood, less CRH and ACTH are released. This process ensures that the adrenal glands release just the right amount of cortisol to meet the body's needs.
However, if something goes wrong with the adrenal glands or the regulating switches in the pituitary or hypothalamus, cortisol production can go awry. This can cause excessive levels of cortisol associated with Cushing's syndrome.

Classifying Cushing's syndrome

There are two types of Cushing's syndrome.
The first type, endogenous Cushing's, occurs when tumors in the body cause the production of high levels of cortisol. These tumors are typically classified based on their location in the body:
  • Cushing's Disease. Caused by tumors in the pituitary gland, Cushing's disease accounts for approximately 70% of all Cushing's syndrome cases.
  • Ectopic Cushing's. Ectopic Cushing's is caused by tumors outside of the pituitary gland. These tumors can be either benign or malignant.
  • Adrenal Cushing's. Adrenal Cushing's is caused by tumors or abnormalities in the adrenal glands. These tumors can be either benign or malignant.
The second type of Cushing's, exogenous Cushing's, occurs when steroid medications such as prednisone are given at high doses for prolonged periods of time for the treatment of another disease, such as asthma or rheumatoid arthritis."

What are the signs and symptoms?

Although essential to mammalian life, cortisol at supraphysiologic doses provokes symptoms and signs such as decreased libido (100%), weight gain (90%), moon facies (88%), hypertension (85%), glucose intolerance, plethoric facies (80%), reddish striae (65%), hirsutism (65%), among others. Growth retardation is frequently seen in children. On routine screening, Cushing’s syndrome is found in 2% to 5% of patients with poorly controlled type 2 diabetes.

Drawing is reproduced from Mayo Clinic Family Health Book, 2nd Edition, 1996

Below are pictures from my photo album showing what would be my before/after (in a max of 1.5 year span) if I do indeed have this disease:

Before, age 13
Notice my super-thick hair.
Before, Age 14.5

After, age 15-16

After, age 17

This was about a year ago.  I don't seem to have many more recent pictures...I'm usually the one with the camera.
 My "buffalo hump" when I'm just standing normally.  I had assumed it was due to slumping and being overweight, yet I looked around in a crowded room of around 150 yesterday and even in overweight or those who share poor-posture with me, I didn't see a single hump in the room. 

  This is me trying to straighten my back/neck as much as possible lest "slumping" make it appears to be the opposite!

What testing is required for diagnosis?

It takes numerous tests to diagnose Cushing's disease or to differentiate it from other forms of Cushing's Syndrome and Pseudo-Cushings' states.  Cushie-Wiki gives a really simple flow chart followed by explanations of each type of test used, I will include just the flow chart and the link to view the rest:



How is Cushing's Disease Treated?

What does recovery entail?

Is there a cure?

For around 40-50% of those with pituitary adenomas, transphenoidal surgery is a "cure", for the rest it either had little effect or causes a remission for a brief period of time, sometimes lasting a few years.  Many in this group go on to have another transphenoidal surgery, many opt for a bilateral adrenalectomy (removal of both adrenal glands, trading untreatable Cushing's Disease for treatable Addison's disease, meaning their life literally now depends on medications they must take multiple times a day).  Some choose a sepcialized kind of radiation when certain parameters are met.

Here is a link to a page listing just a sampling of Cushing's patients and their various treatments (with dates) in honor of Cushing's Awareness Day (April 8th): 

Stuff I've posted elsewhere but haven't edited and consolidated for this page yet:

I actually haven't been able to figure it out...gut-feeling-wise...between the AI/Sheehan's and the Cushings that Dr. F is testing for. I've been feeling for a while like it was somehow both, but knew that in all reality the chances of that were next to nothing (I mean, pituitary adenomas are 1-2/million, Sheehan's around 5/ the chances of having both?). I was pretty confused but didn't want to sound crazy by saying what I thought. Both fit so well in so many ways, though not completely. So maybe this is exactly what it is and why both sounded so right? Dr. F did say that if I had Cushing's (or Sheehan's for that matter) that I would be an atypical case.

It would explain why at times I gain weight for no apparent reason, and why at other times I lose weight for no apparent reason (and I don't mean a few pounds here or there, but 1-4 lbs/week for multiple weeks or months) could have been up and down cycles messing with my metabolism. I've always accepted that my weight was my fault, but was always irritated that everyone assumed I ate poorly or was totally inactive (okay, well that part is true now!) when I stayed active and ate better than most people I knew, ESPECIALLY the twigy ones!

If I have Cushings, it'd probably be "episodic" (meaning at various times, days, weeks, months or years I'm high, and at various times I'm low...kind of random) or possibly cyclic (which from what I gather generally means high cortisol at night and low during the day), I'd assume mild most of the time (or how else could it have gone on this long, right, either that or my younger body has handled the high periods better?), and started about 15-16 years ago when I was in high school. I fit the Cushings scenario perfectly at that time, but it was a chicken vs. egg thing with the weight, depression, etc and being a teenager I accepted the blame from parents and doctors. About 9 years ago now Britton and I read up on Cushings (his mother died from it because she'd refused all treatment) and SO much of it fit, it is just that it wasn't an exact match at the time (mostly because my sex hormone-related functions weren't affected --and for the most part still aren't) so I read a bit but didn't ever see a doctor about it.

I've learned you can have false positives on high UFC's, though false "negatives" are very common if you have cyclical or episodic cushings. And thing also said that people wiith AI can frequently fall in the normal ranges despite proven dx, fyi. I don't have any known reason for a false high, though. Unless you have a REALLY high number, they want other highs as well before diagnosis...preferably in another form of test, but a good endo will continue testing till highs are proven, disproven over a long time (like a year!), or another diagnosis is made. Once you're dx'd, they move onto other testing (like supression tests, etc) to find where it is coming from (adrenal, pituitary, ectopic) and that further confirms the dx. Some 50% of tumors found via pit surgery weren't visualized on MRI. In those cases they get sufficient lab testing to show it's hypercortisol and the likely source and then move forward.

I've also learned that episodic or cyclic cushings can cause hypo-pit or AI symptoms in a low. It's pretty interesting stuff. For one, the hypercortisolemia affects the metabolism, production, absorption, etc of other hormones and can throw them off. But, in episodic/cyclic cushings disease (ACTH producing tumor) the tumor produces excess from time to time, and that supresses the pituitary's own ACTH production much the way inappropriate replacement can, and then when the tumor production cycles back down (not sure the mechanisms at play there yet), your pit is suppressed and you can have low cortisol (not just "normal") before your pituitary kicks back into gear sufficiently. That makes a lot of sense and could explain a great deal. 

Not that I want a brain tumor, but hopefully I'll get confirming results instead of conflicting ones so we can start getting some answers instead of more confusion. If it is cushings, I'd definitely be in a high right now so testing should show it (sudden insatiable appetite, 12lb weight gain in last 4 weeks despite no changees in diet and doing more physically than the weeks before, harder time staying asleep, higher bp, etc). I was really worried they left the urine sitting on the counter with the first UFC after I left and it should be refridgerated...the gal told me she was the only one at the lab that day. That would cause a false low though, so at worst it could have been higher and doesn't negate the results. Guess we'll see what the others all say...

Britt and I went through my photo albums the other night and it is a very drastic change between my 14 1/2 y/o pictures and my 16 y/o pictures. I can't really find any pictures that I know for sure are from when I was 15 y/o, but if pictures in the albums are of that age, then it just shortens the timespan that I made that drastic change as we can't see any between look that would suggest a slower transition. I went from about a size 11/12 to a size 18/20 and gained about 60lbs sometime within those 1 1/2 years. My face changed (red, round, acne, didn't have that for the 3+ years before when AF had started), my hair went from super-thick to thin and frizzy, I became depressed/anxious, I started having trouble sleeping, I stopped sports (used to be in softball, competetive jumprope on a state level, played almost the entire game of basketball in my league, swam in front of the house all summer long, etc) and took up music instead and I stopped doing things outside the house. I have the huge stretch marks (silvery now, not red) that go from almost my knees to my elbows and around my back. Britton says I had them when we got married (ie, not from pregnancy). I even have a fat pad that looks similar to the "buffalo hump", but I don't know if normal overweight people get those. Dr. F noted thin skin on the top of my hands in my charting, and apparently high cortisol is about the only thing that does that to young women. What I don't have is facial hair, menstruation issues (aside from maybe a heavier flow, so backwards), infertility, diabetes (though I will with time if I can't get healthy), chronic hypertension, and joint pain.

Britton thinks it can't be a fluke that this disease has been brought up twice for me now, and says the above pictures are not normal for a year and a half's time, even if I was depressed...

Anyway, if more of my current cortisol tests come back high (still waiting on 2 more UFC's, I'm doing my last salivary tonight then will send those 3 in, and the serum one), then Dr. F will probably order more labwork. Either more of the same in the hopes of just getting sufficient lab confirmation (don't know what he requires, especially since that first high was only a little high), or he'll move forward with testing like Dex suppresion tests (basically the opposite of the Stim tests), of which there are various types, or a petrosal sinus sampling, or more CT's/MRI's (to check adrenals or for ectopic tumors --though those are really rare) in an effort to figure out where this pesky tumor might be. Then I'd get approved for surgery. Chances are it is pituitary (some 80% of the 1-2/million), especially since my ACTH has been above 15 twice now...atleast that is what one study said.

Sorry, I don't know if I explained that "Cushing's Syndrome" is 10-15/million and the majority of those have steroid-induced cushings, meaning over-replacement or often from treating autoimmune disorders. "Cushing's Disease" is caused by tumors, is found in 1-2/million, and some 80% of those are pituitary adenomas (benign). The rest are either adrenal tumors or ectopic tumors (meaning anywhere else in the body) and can be malignant or benign...seems like they said usually found in the kidneys or lungs. It is my understanding that that minority often have severe disease, though, and are more likely to get a quick diagnosis with very high lab results.

So, anyway, they would do a trans-sphenoidal surgery where they go in through your nose, through the sinuses, and remove a part of the bone around the pituitary to gain access. They remove whatever tumor(s) they find there (apparently 50% aren't seen prior to surgery by MRI, but their tissue is easily distinguishable to the naked eye) and hopefully don't remove too much of the pituitary tissue. That is a definite risk, though treatable. There is also a moderate risk of a CFS leak, though I forget the stats. They re-seal the area around the pituitary with a fat plug from your own body, I think, and the bone re-grows.  

Most people go home from the hospital within a few days. You can't bend over for some 6 wks due to pressure increases, and there is some funky "blow your nose/nose picking" stuff as you could imagine. If you feel worse after surgery (being hit by a truck is the general description), then you know you're in remission. A cortisol of 2 is considered good news after surgery (I'm assuming immediately after, and serum). You go home with AI and on HC. Within 6 months -2 years you gradually wean yourself off the HC as your pituitary starts to kick back in. Some never do, but most are weaned by 12 months post-op. I was reading recovery info last night, and it sounds like it is a long road. Many have emotional symptom improvement immediately, though struggles with the recovery itself, which is understandable. You're weaning yourself from steroids, and apparently it is like being an addict deprived of drugs...the high cortisol has masked the pain of joints, injuries, and even muscle wasting and there can be a fair amount of pain involved (makes me think of Dr. House, though that's necrosis). Some people recovery physically rather quickly, most have to work hard to gain muscle strength back...and take it slowly in the process, doing things like swimming and yoga. I wonder if I could try karate again for the tai-chi like parts and just forgo the actual sparring for a while? I did enjoy that and it is GREAT for working various muscle groups and burning calories.

Few report making it back to "normal", but just about everyone is happy they did it and has major improvements. Some have to diet, some don't. The majority of the weight is lost in the first 12 months (with the average gain from cushings being 55lbs, say you lose the first 35 in 12 months, then 10 the next year, and 5 the year after that and so on till you're stabilized).

The mental issues (memory, etc) generally take years to resolve and some never do. I read articles about that last night, apparently with hypercortisolemia your brain actually shrinks and it lessens the synapses (think my brain hit overload by that point in my reading so I can't explain it better). The shrinking recovers over time but sometimes the synapses stuff doesn't...all depends and hasn't been studied too much if I remember right.

Remission is considered a "cure" after a few years. Sometimes the tumor regrows, or the disease comes back for whatever reason (an ectopic or adrenal tumor, they didn't get all the tumor tissue, they missed a tumor on another part of the pituitary, etc) or it just wasn't successful in the first place. The stats are all over the place on this one. Some say 90% cure rate, some say 40%, my guess is it depends on what you consider a "cure." If the tumor can be identified the majority of people go in for another pit surgery. Some opt for gamma knife radiation, though it sounds as though it is VERY few and has some really specific requirements for where the tumor is in relation to vessels, brain, etc. Some opt for a bilateral adrenalectomy at that point, chosing addisons over cushings. That sounds fairly common, and is the first choice doctor recommendation should a 2nd pit surgery fail, it seems. There is controversy over using a BLA for the 2nd surgery, though seems pretty evenly split among the doctors depends more on the patient and their understanding of what they're chosing.
Medical treatment for cushings is not used long-term and is only for those who cannot undergo surgery, and only if you have type 1 diabetes (cushings causes it) as well, due to the large numbers of high-risk side effects involved with the medications (I think only one is FDA approved, and there are two more, one not available in the states). So, surgery really is the only option and it explains more why people for whom surgery has failed move on to chosing a BLA and addisons. The mortality rate untreated is somewhere around 5 fold, whereas treated it is closer to the norm. It is still slightly elevated, but that is all individual based on how much damage the disease has done to your cardiovascular system already.

I don't have chronic hypertension, diabetes, or joint pain, and I'm young. While they say the same thing as you do with AI "takes as long to get better as you've been sick", I can't imagine it would be 15 years! The younger patients generally recover faster and easier (and 31 is young-ish), and because I don't have a lot of the complications if I do have Cushing's, I should do fairly well.

So, it appears that the norm is to start getting positive test results about 3-5 months before surgery is it'd be fall/winter before we got that far (IF we do).

Friday, May 18, 2012

Hands that lift

There have been a number of people who have shown us small acts of kindness during our struggles, often without any outside prompting.  These hands have lifted us up in times of need...without judgement, lectures or threats.  I've thanked them already in person, and though I don't intend to share this blog locally, I will express thanks to them specifically here anyway in no particular order.  I figure it is safe to share first names...

To Karleen who has helped us from the beginning, whenever able.  She's cleaned my kitchen, washed dishes, sewed Christmas quilts, folded laundry, vacuumed the floor, helped wrangel kids at church, traveled with me when I shouldn't do so alone, babysat so we could go out for an anniversary dinner, watched children so I could attend appointments and even stayed with them so Britton could travel with me for my MRI, taken kids on walks, driven me to meetings when I couldn't drive, attended meetings as a third party, called to asked how I was doing, brought meals, and has never questioned the validity of my being sick or the effort that Britton has made.

To Lorrie who watched kids for an ultrasound, took them to make Christmas crafts, and threw us a lovely baby shower.

To the sisters who made freezer meals when asked by Lily (and Lily for asking), though I only know of two of you...Sandy and Lily.

To Sydney and may have been paid to do your jobs, but we all know there are nurses and then there are nurses.  You take it beyond medicine and truly care.

To my aunt who visited me in the hospital during the days to help watch Millie so I could rest, who brought me my medication when I couldn't get to the pharmacy, and who took time from her busy schedule so that my mom can come see us from time to time.

To Camille who has become a good friend.  She's experienced first-hand the kind of fatigue issues I've had when her daughter was ill and recovering, and she's also experienced inappropriate judgement and conduct in ways similar to what we've been experiencing.  Being able to talk with her from time to time, email, and have her ask how I'm doing (and want to know the full answer) has been invaluable.  She has also brought us meals, washed and sorted baby clothes to help us get ready, stopped by to chat, and stayed with me a couple nights following my emergency cesarean in the hospital.  I couldn't care for my daughter by myself and she became a live-in grandma that offered emotional support and allowed me the opportunity to sleep!

To Karen who made us a meal after Millie was born, completely out of a desire to serve and on her own accord.

To my mom who talks to me on the phone daily though she cannot be here, helped sew the Christmas quilts, sewed some burp rags, sends meals off and on for us, gave us her air miles for travel, and always sends a treat up for the kids (much to Britton's dismay!).

To Aaron who has helped care for chickens and goats when Britton was out of town.

To Philip and Julie who cooked us a lovely Easter dinner, treated our kids to an Easter egg hunt, helped clean up while they were here, offered to help in whatever ways they could from the East coast, and are helping pay for the cleaning help we're getting one to two days a week.

To Ken who has allowed us to take his wife from him on many occasions.

To Valerie who took time out of her brief vacation to first visit me in the hospital, then volunteed to watch my 5 children so Britton could attend the priesthood session.  In the two hours she was here watching children she had our house cleaned from top to bottom!

To Ruby who stayed with me the other nights in the hospital to take care of Millie, and who also sent us a meal shortly after we went home.

To my visiting teachers, Jen and Stephanie, who organized the group of ladies that came to my house to clean for an hour, who each brought us a meal (one that night and one the next), did the dishes again in February, and originally tried to set up ongoing meals and help.

To Teresa who had the unfortunate luck of asking me how I was doing after a particularly emotional sacrament meeting in February.  She brought a meal the very next day, on her own accord, and then sent a frozen meal later. 

To MaryAnn who also watched our kids for an ultrasound and who watched them again so that we could go out for a lunch date.  She's frequently offered to watch our then-five children and if I'd had the umph to get them ready and drive to and fro, we'd have taken her up on that offer for sure.

To the sisters who came to clean my house that Monday in January...Jaylyn, Janae, Jen, Tina (Teana?), Kristen, and Stephanie.  Hope I didn't forget someone.

To Joy who sewed our fabulous newborn diapers after we cut them out, along with some lovely burp rags.

And lastly, to the people on the hormone-disorder forums and groups of which I am now a part, for sharing your own experiences so I don't feel so alone and abnormal, for your support and encouragement, and for sharing your collective wealth of knowledge.

Wednesday, May 16, 2012

Can I DO-over the over-DO? Diagnoses and Daily Life

I realized not enough of my medical background is on the blog for me to write posts without inserting a paragraph or three explaining things as I go, so I'll lay it all out for you here:
If you've read my profile and blog you know that I'm a homeschooling, stay-at-home mother of 6 children, the youngest born nearly 7 weeks ago. You'll know that I'm sick with a yet-undiagnosed illness that causes a myriad of crazy symptoms.  New to you will be that I saw three doctors and two midwives before I went to see a world-renowned Endocrinologist, "Dr. F", at roughly 35 weeks pregnant because I was so tired of being tired. 
While most of my hormones couldn't be tested at that time due to pregnancy, thyroid hormones could be and I was diagnosed with hypothyroidism.  My hypothyroidism is caused by Hashimoto's Thyroiditis (an autoimmune disease) and the lab testing is also suggestive of central hypothyroidism (meaning pituitary-caused).  Basically, my immune system is attacking my thyroid so my thyroid isn't producing sufficient hormones.  Normally if your thyroid hormones are too low your pituitary (which regulates hormone-secreting glands throughout the body) produces more "thyroid stimulating hormone" (TSH) to kick your thyroid into production.  In my case, my pituitary wasn't compensating for the deficiency suggesting diminished pituitary function, or hypopituitarism.  I've had a large number of blood tests to know exactly what pituitary-related hormones are being effected and how severely, with more testing yet to come.  The only result back thus far is my MRI which looks good (IE, a pituitary tumor is now far less likely).
What I consider my worst symptom is the near-debilitating fatigue.  I've had a constant level of fatigue (or is it a new drastically lower level of energy?) for the last 6 months or more that is very limiting as far as daily activity is concerned.  I've had a little improvement (and I mean little) since my delivery and emergency cesarean recovery, but it has proven to almost be a curse instead of the blessing it should be due to my own desire to just do.  Now I feel like I can do more, so I try, and then I inevitably over-do it and have what I call a "crash" that can wipe me out at least for the rest of the day, and at most for a few days or even weeks.  I'm still trying to recover from the weekend, and it is probably taking longer than it should because I have such a hard time just doing nothing. 
So let me share what a crash feels like.  First, it is nothing like regular tiredness or exhaustion that comes on gradually and can be relieved by a little rest relatively quickly, or avoided by slowing down.  This kind comes on with no warning whatsoever.  By the time the first sign that I've done too much appears, the damage is done.  The first sign is usually that my face flushes, regardless of the room temperature or my physical exertion at the time (it isn't like I'm running up stairs --I may even be sitting as emotional stress can be too much for me as well).  My cheeks become a lovely rosy color and they're noticeably warmer to the touch.  That is followed by the feeling of physical tiredness often accompanied by chills (again, despite the room's temperature, layers of clothing or even blankets).  Sometimes it ends there if it isn't too bad of a crash and I can go to bed that day and wake up my "new-normal self" the next morning...tired, but not exhausted.  When it has happened earlier in the day or I crash harder, my body goes from tiredness to utter exhaustion where my limbs feel like they're weighted down and I can literally feel the energy it takes to raise a finger or even to hold my head upright.  It can even be hard to keep my eyes open, and this phase is often when one of my other symptoms, light sensitivity, is at it's worst.  I can often tell how badly I crashed the day before by how I feel upon waking in the morning.  After a "regular" day I wake up tired, as if I never went to sleep.  The milder crashes don't tend to be any different.  A moderate crash and I wake up feeling exhausted already, like I just sat down from a long day of chasing kids.  If I do nothing this day and don't have to deal with much in the way of stress or strong emotions, I'll usually be back to my "new-normal" of regular tiredness the next morning.  A severe crash hits and I still feel like lead when I wake up --I have to convince myself to lift my arms, head, and legs off the bed to get up.  I'd imagine it compares to how one feels after having run a marathon and then sat down...not that I'd know.  ;)  This usually takes multiple days of almost no energy usage to return to my state of normalcy, if you can call it that.
I have to pre-plan my entire life right now by my energy level.  It is not a good thing to be couch-ridden and still have four hours of kid-watching before dad comes home, and if I over-do it too much, I may spend days trying to recover so I can just keep up with those "normal" minimums I do these days.  I have to try to ration myself so that I can have the energy I need for the emergencies around my house.  I haven't really been able to cook or clean for 6 months or more, I have to make sure I have the energy I need to make a bottle, change a newborn's diaper, and stop fights, etc.  I've had a number of days the past few weeks where I've woken up feeling okay and thought I'd try just one thing --folding laundry, cooking a simple meal (as in putting the fish sticks in the oven and chopping the apples and carrots, when I used to spend 1-2 hours a meal to cook everything from scratch before), or cleaning the breakfast dishes off the table.  I've crashed quite frequently lately thanks to doing just one simple thing like that before I knew what the day would hold for me.  This Sunday (or the Saturday before, actually) was a perfect example, and when I finally do type up my "Mother's Day" post, you'll get to live it vicariously in all it's chaotic splendor.  I'm still paying for it...

For a great explanation of how the "rationing" of energy works or feels, I'd suggest reading "The Spoon Theory" by Christine Miserandino; It is a great object lesson. 

Sunday, May 13, 2012

Mother's Day

"Happy" isn't the label I'd pick for today.  Before I made it to my 10am church meeting about 20 minutes late with 6 mostly dressed and mostly clean kids in tow, I'd already broken down in tears, yelled at my kids, and even spanked one.  Still despite the constant stresses, I'm amazed that I'm not as upset as I think I should be.  Right now thanks to the joys of the day my arms feel like lead, but I'll post this morning's crazy antics soon.  I promise it'll be a comedy worthy of "I Love Lucy" for those that didn't have to live it!

Friday, May 11, 2012

"Diagnosis seeking" and other comments

I've run into quite a bit of false logic, false rumors, and false assumptions with my illness these past 5-6 months.  I swear sometimes people do really forget to think about what they're saying before they speak.  Sometimes when that happens it is so hurtful that my gut says smack their heads together three-stooges-style, but that would only make me feel better in the short term and wouldn't actually improve the situation. 

There is usually some semblance of truth to what they're saying, but they're missing some vital points and thus their judgement is skewed.  One false assumption or idea seems to lead to more, so let us discuss a few examples to try to fix that: 

Doctors know best.
How wrong this is; let me count the ways.  I know this causes cognitive dissonance for many, but doctors are human too.  In general they know a lot about SOME things.  Each doctor is different, and sometimes they forget that each patient is different too.  Some doctors don't take the time to even listen to your complaints.  Others hold true to the "when you hear hoof beats think horses, not zebras" mantra even when they should be looking for zebras.  Others are good listeners and know how to do their job but also cannot know everything there is to know about every organ and system in the body.

Seeking a diagnosis is bad.
If you're sick and you want help, there is NOTHING inappropriate about finding that help. And really, who in their right mind wants to go through tons of testing, time, headaches, stress, travel, (don't forget doctors too!) and spend tons of money to be told you need brain surgery or life-long hormone replacement? 

As an example, I was asked by an OB why I was having non-stress tests weekly after about 32 weeks of pregnancy.  I told her that I was considered high risk (I have high cardiac output and am on medication to slow my heart rate), it was standard for my pregnancies, and that the midwife had ordered them at my last appointment.  She told me I was not high risk and asked why I wanted to be!  There are so many things wrong with that statement, but let us address the question.  I ended up being induced at 40 weeks, just a few hours after being diagnosed with Oligohydramnios by a more conscientious OB.  There was no "wait and see" option because it was so severe, and I ended up with an emergency cesarean.  Did I want to be high-risk?  HECK NO!  But I WAS high risk and wanted to be monitored carefully so that my baby and I could be safe.  The risks of oligo are IUGR (growth restriction) and stillbirth because oligo itself is caused by the baby not getting enough nutrients and blood flow from the placenta.  Sounds pretty risky to me.  My husband is convinced that had the first OB taken things seriously and been more cautious, they'd have caught the oligo earlier thereby allowing more leeway with an induction and hopefully avoiding the painful, lengthy recovery from a cesarean.  I hate to think what could have happened had the second OB not monitored us closely.

What sick person wouldn't gladly put forth effort and money to get well sooner if they could? Don't forget that this is life; you can't get time back.

If a local MD can't diagnose it then you must not have it.  (Add to that, if you have to travel to get a diagnosis, the doctor must be a quack who is only after your money)
You shouldn't have to travel to see a specialist and get diagnosed, absolutely! But the reality is that most people DO have to travel to see a specialist for rare, hard to diagnose diseases.  My endocrinologist has the CV to beat all CV's, meaning his medical "resume" is quite impressive --he is no fly-by-night, make-money-off-a-sucker doctor who'll hand out a diagnosis to line his pockets. (This was my mother's concern) He IS an expert in this field and deals with the most difficult of cases. Heck, he writes the textbooks and studies these other doctor's learn from.   Wouldn't you think going to a specialist would, in theory, make it HARDER to get a false diagnosis than an MD who hasn't treated the disease before, doesn't know how to test for it, etc?

You can't be sick because you look normal.
I wish this logic held true...then just by dressing in expensive clothes, I'd be rich! 

My fourth grade teacher learned this lesson the hard way when I asked to go to the bathroom because I felt sick.  She wouldn't let me.  Not only did I get to go to the bathroom in the end, but I got to go home for the rest of the day, and my classmates got the pleasure of a freshly-cleaned carpet. 

Sometimes sickness can be quite visible, sometimes people wallow in their illnesses (using a minor head cold as an excuse not to do anything they don't want to do), sometimes illnesses are known only to those that suffer, and sometimes those suffering do their best to push through it and live life despite illness, giving the false impression of wellness.

I look like my usual self, aside from being a bit more pale or flushing when I've overdone it.  Even when I'm in the middle of what I call a "crash" and can't physically do anything more that day (holding my head up becomes difficult), I still *look* pretty normal.

Didn't we all learn early on:  Looks can be deceiving.

Everything can be cured by exercise and diet (or the converse, everything is caused by poor diet and a lack of exercise).
I've come to realize that even IF someone's sickness is due to their own actions, judging them for that, refusing to help when they're in need, or putting them down because of it helps in no way at all. You're sick. You caused it. Let me make you feel worse than you already do! There's charity for ya.

Genetics, accidents, and life just happen.  There is much sickness caused by poor diet and a lack of exercise and taking care of yourself can help you avoid some illnesses and cope better with those you can't avoid.  The conditions I am being tested for are not caused by a poor diet or lack of exercise. 

I actually got sick while being quite active (singing and tap dancing in a musical while 18 weeks pregnant), and my first obvious downswing that I remember in my health before that was at a time I was doing about 4-6 hours of karate a week (which burns 750 calories an hour, FYI) and started eating an organic, whole foods, low-starch diet that was very high in nutrients in an effort to be healthier.

You can decide to feel better.
I can decide to feel better but if my body isn't well, it isn't going to work.  Right now if I "fake it till I make it" I end up pretty much bedridden for a couple of just isn't worth it.  I've been forced to be more of a realist in my day to day activities and health, and an optimist in my future, diagnosis, and treatment.  I WILL feel better some day, I'm just not there yet.

You're just lazy, not sick.
It is wrong that being sick should make someone feel guilty; it is even more wrong if our actions or comments encourage that feeling.  I hate not being able to do things and feel lazy (in the derogatory sense) when I can't do things even due to sickness.  It is bad enough that every time someone does come to my house or while I'm at church, I do more than I should and can end up exhausted for days. I've always pushed through to get the job done and it is a daily struggle for me now that my body doesn't cooperate and a good night's sleep won't solve everything. Everyone likes the opportunity to relax sometimes, but trust me it gets REALLY boring, the kids turn into Bedlamites, and your house turns into a garbage dump when doing nothing (even for good reason) becomes the norm. 

My guess is that most people haven't thought about what they're really saying, or they have some other emotion-based concerns and haven't yet been able to verbalize (or realize) them for whatever reason.  I think part of it can be that those who care about you honestly don't want you to be sick.  They may try to blame your illness on something they see as safer or more easily fixed (like diet or exercise) or even suggest that it is all in your head (thus there isn't really a problem).  Patients aren't the only ones who dabble in denial.  There are even others who try to be optimistic to the extreme, downplaying the reality of someone's very real struggles or not allowing them to talk about their illness or emotions.  And yet more hurt comes from people simply not understanding what someone is going please, just ask! 

Before you make statements following any of the above threads of logic, ask yourself if you really think the person you are speaking to or about would seek attention in that way? Are they that illogical that they'd beat their head against that brick wall without a reason?  Is that something a lazy person would do?  Is not doing your own housework a good way to get your house cleaned?  Are they that stupid? Are they that crazy?  If they could decide to make it go away, wouldn't they have tried that by now?  Is that really what you think of them?  Is that what you're really trying to say?  Are you wanting to show love and support, or are you trying to offend? 

While we often realize you don't mean what you say, it still hurts...and we've got enough of that already.

This post was inspired by a thread on the Cushings-Help website.  Someone was feeling unsupported by their family and the lack of logic (and charity) behind it got me on a roll...

Wednesday, May 9, 2012

MRI Results Update

I had a brief phone consult with my Endocrinologist last night, and he said my MRI results were pretty normal; That makes Cushing's (pituitary tumor) fairly unlikely, though doesn't actually rule anything out.  50% of surgically proven ACTH-producing tumors (that cause cushings) aren't visualized by MRI.  The next step is to wait for my labs to come back.

Okay, I have to add a funny.  Every time I see the title of this post or even just think about the MRI now, I hear my husband's best Arnold Shwartzenegger voice repeating "It's not a toomah!"

Tuesday, May 8, 2012

How are you?

Almost every time I am out in public, even multiple times in rapid succession, I get asked "How are you?" as a passing greeting.  I cannot tell you how much I have grown to hate that question.  And no, it isn't the question itself. 

Years ago my cousin had a very hard couple of months.  My father died and so did one of her friends from college, both unexpectedly and a short time from each other.  People would ask her "How are you doing?" all the time.  She disliked it as a standard greeting also and decided to answer with a blunt and truthful response; I can imagine some of the reactions that got from those unsuspecting souls.

When I was 20 years old a very dear friend of mine took his own life.  We'd met my sophomore year of college and despite having moved away (he had left on a mission for our church and I moved home to get my year of EMT experience required for paramedic school), he was my best friend and I held onto hopes of marrying him some day.  The months after his death were some of the hardest I've lived through and again I was repeatedly hit by that question: "How are you doing?"

Yes, I had the "Fine" answer well-practiced by age 20, but in my emotional state at that time it honestly made me feel worse to say I was "Fine" when I was anything but.  I felt isolated enough with few knowing what I was going through and that I was even hurting, why would I create a false front of happiness or well being?  Just to make others feel better?  And lets be honest --it was a lie I'd been telling, but I was not as brave as my cousin to just throw my emotional state out there for all to see.

I started answering the "How ya doin'?" greeting by saying "I'm alive." I don't know how or where I got the idea, but it was a great one.  See, it wasn't an answer in and of itself, really, but it was a tool by which I could sort out those who cared and were honestly asking from those who really were just using it as a passing address.  Those in the latter group would either miss the answer entirely as they went on about their business or give a little chuckle as if it were a joke.  Those who listened to my answer would stop and ask what that meant, and then I could decide how much and what to share of my actual state at that time knowing they cared and wanted to know.

See, while I really do feel the need for deep connections with people around me (and tend to talk too much), I am not interested in sharing the deeply emotional or personal details of my life with someone who doesn't want to hear them.  That can cause more hurt than not having someone to share with, I've learned.

I'm now in a situation yet again where I dread this question each time I leave home.  How do I answer?  I've been sick off and on for quite a while, but at some point shortly after Thanksgiving 2011 I had a downswing that I have yet to come back from.  I'm near bedridden energy-wise and have a long list of seemingly random symptoms, but I look like my usual self and people assume I am fine.  Do I tell the unsuspecting that my endocrinologist, an expert even among experts, is testing me for a pituitary stroke or tumor?  Do I tell them I'm "fine" since that is the answer they expect and is the fastest response?  It certainly requires the least of me up-front, but just like charging that credit card, it costs me more in the end. 

In February I took to answering that I was "About the same."  I have seen a small amount of improvement on thyroid medication, iron and vitamin D supplementation, but I didn't dare say I was feeling better because the assumption then is that I was back to normal again when reality is that I went from being constantly exhausted and bedridden to being able to talk and sing with the medications.  Now almost six weeks after delivering my daughter I'm actually able to walk around and do a little bit.  And by that I mean the things most take for granted, like clearing the table or making a no-prep lunch.  I still have to spend the majority of the day lying down or sitting and I've overdone it most days the last week or two because I've tried to do too much (it can have compounding effects causing me to be near bedridden again that evening or even for days afterwards).  So for the past week or so I've been answering "I feel like I can do things, until I try to actually do them."  I think it's funny, but I guess it isn't when you think about the reality of it.

Every now and then I'll play dumb and assume the other person knows something about what has been going on (usually in a more one-on-one situation) and give an update as to whether I've had my labs drawn, share that I just got back from my trip to LA to get the MRI, or speak of my upcoming phone consult to discuss test results. It is a sneaky way of informing others around me of what is going on but I am so tired of feeling alone and would love some encouragement or support.
I still get caught off guard at times and don't know how to answer.  Like Sunday morning at church while hanging up my kids' coats...I didn't answer at all because in the handful of seconds the one asking was within earshot, I hadn't figured out what to say.  Hopefully she didn't think I was beibg rude or ignoring her, I was actually concentrating on her question far more than most would...Sorry, Wendy.

I have high hopes of getting a diagnosis and then treatment, though the realistic expectation is that I will still be recovering for months to years after that point.  In time I hope that I can truthfully answer "How are you?" with a "Fine" or even a "GREAT!"  But for now when you ask me how I'm doing as you're passing me in a hall at church or...Hmm (aside from medical appointments that is about the only place I've gone in 5 months)...please either stop and listen attentively to the answer or don't ask at all.  I honestly don't want to be reminded of my current struggles over and over again, especially in public, and I am tired of faking it.