Friday, October 16, 2015

Acceptance and After Shocks.

The 5 stages of grief are denial, anger, bargaining, depression and acceptance.  And I think I'm coming to an understanding of acceptance now...finally. 

It doesn't mean I am by any means happy with my health and abilities.  I still REALLY want to do so much better than I am, to feel better, to be active, to get my mental abilities back, my physical ones, etc.  But for the most part I have stopped expecting more of myself than I can give. 

It also doesn't mean that I have stopped trying to get better, to seek help, and to progress past my current limitations and level of health.  I just can't let that drive rule all my thoughts and actions.  I have some very serious health issues still (empty sella syndrome, hypopituitarism, hypoaldosteronism, hashimoto's thyroiditis, low vitamin D, liver damage from medication to treat Cushing's, etc), any one of which could cause severe fatigue, but we have yet to find the magic bullet to get me on the upswing.  I'm still looking for answers, still testing, still adjusting hormones, and I still carefully test my physical limits to see if I can move forward (it still backfires, sadly).  I just can't let this desire be my entire focus because I already know from experience that the lack of timely progress will swing me right back into that dark head space I was in before. I can't spend my life in that place.  No matter how limited that "life" may seem, I need to live it better than that.

So I have not come to the point of accepting that where I am is where I will always be.  But I do have to keep a positive outlook, and that means accepting it may be a really long road (already has been) to recovery, and having realistic expectations of what "better" might look like for me.  From the outside looking in, the improvements I've already had may appear rather minimal.  From my perspective, some of them have been huge.  I wanted more, I still want more, but I have to be grateful for those changes I have seen, and realize that any improvement gets me one step closer and gives hope for more.

I'm no longer depressed daily by the thoughts of everything I've lost and everything I am missing (luckily that one went away early on in this path).  Though sadly, with a chronic condition, I'm not sure that the stages of grief are ever final and gone.  I think they just show up less often the more we accept our illness.

My life is still so different from the lives of friends, I don't know that it is even possible to bridge that divide of understanding.  Some times I just don't have the energy to try (and especially to fail) at explaining some aspect of my life.  Few people want to spend the time and energy to truly understand, and sometimes I think people just can't fathom it even if they try.  I get it.  Where I am now is so foreign to where I was 5 years ago.  It is really hard to believe I ended up here when I think about it...and I've lived through it! 

But this gap can mean that in the course of totally normal conversation and events, I am hit with a reminder of how different my life is.  For the most part now I choose not to even mention it, and try not to think of it much or dwell on it.  If I share my reality with those who love me and want to know, it comes across as depressing, overwhelming, and sad.  There is just no way to sugar coat it so thoroughly to not have that happen.  And I don't want to be constantly going on and on about how bad my life is.  I've done that.   It doesn't help me feel much better, and by no means helps them feel better!  

My life is actually fairly good, despite all the horrible crap, because I choose to feel that way about it.  Each day is different, and some days are horrific, but I choose not to dwell on those and each day truly is a unique experience, no matter how "same-same" it appears on the outside.  I do feel a need for others to understand still, to connect on a deeper level, but I choose not to force it.  I don't know that I could have done that before, while in the midst of such difficult struggles.  I do know I didn't do that.  I was so desperate myself, that my need to share and be understood came first.  Huh, maybe it is all about my needs still, but my needs have changed to a need to keep friends, to interact with them as "normally" as I can, and to not dwell on the hardships so that I can endure in hope.  Guess it's all still selfish motivation!  Dang it.

My point is, there are still things that bring the grief cycle back to my present, forcing me to work through it all again.  It could be as simple as hearing a song and wanting to jump up and dance to it, a recipe I want to cook, seeing an advertisement for a musical I wish I could participate in, reading a meme about getting away from electronics, sunshine out my window, sorting through sewing fabric, or the desire to go shopping or to just leave the house.  It's always something unexpected, frequently something common, and often something I have already grieved over at some point.  But for some reason on that day, it strikes my grief cord and I have to go through the grieving process yet again.  The difference is now I know I can work through it, and I can do it so much faster than before.  It's almost like after-shocks.  The big grief-quake is over, these are just leftovers -reminders of what I went through, releasing smaller bursts of energy that still remain.  These grief after-shocks seem to be dropping in both intensity and frequency, so hopefully that improvement will continue, and it will not be contingent on my recovery.  I hope I will get a LOT better, I WANT to, and I'm still working on it, but I can be happy now.

Thursday, July 23, 2015

Things do get better...

I'm down 28lbs since my Cushing's Disease symptoms went away. I've been steadily dropping a few pounds a month without effort. Crazy how much damage high cortisol can do! And crazy how much improvement bringing cortisol into normal range can do!

For the record, the weight is only one in a large list of symptoms, and while it is the most visible, it is by no means the most dangerous or problematic -most of us "Cushies" would take plain old fat over the disease any day.

There were so many years of judgment and blame (this readers theater monologue can give you an idea of just how hard that is/was). The credit for the weight gain wasn't mine, and neither is this loss.

As of a month ago I was still only able to walk about 200 steps a day and I haven't been dieting one iota. This loss is pure hormone balance and healing.

Today I went looking back through my symptom tracking and I am back to a weight I haven't seen since November 2013! I have had some improvement in energy finally this past month (though overdid it a Magic and am still paying for that). I have a long way to go, but hopefully I can start building back muscle, start cooking and cleaning and doing things I enjoy again, and maybe even start burning fat and building muscle faster WITH effort soon.

Saturday, May 30, 2015

HOPE! A recap of where things stand plus an update

After more than a decade of Cushing's Disease taking a heavy (har har) toll on my body, I had brain surgery last February at MD Anderson Cancer Center in Texas.  They definitely got the tumor, but pathology said it was "hyperplasia" meaning spread out, random cells throughout my pituitary were slightly overgrown (think buckshot), instead of a solid, encapsulated tumor...these had just had long enough to grow together into a visible clump.  Surgery didn't fully resolve my Cushing's Disease symptoms or test results, but it all appears to have gone away when I developed empty sella about 9 months later (ie, my pituitary is now being smushed by the CSF that surrounds my brain).

That empty sella both killed off what was left of my Cushing's, and some of my pituitary's own function.  I can no longer produce growth hormone (bit of a misnomer) and that deficiency made me feel almost as bad as Cushing's did.  I have been replacing growth hormone with a nightly injection for about 4 months now, and am getting close to what will likely be my ultimate required dose (titrating up also made me ill as it catabolizes cortisol and my body's HPA axis is still trying to recover from Cushing's).  I am on the low end of normal for the next hormones that generally are affected following pituitary damage, which affect the female hormones.  I will be starting transdermal estrogen soon (insurance doesn't want to pay for the brand my Endo specified in the rx).  I also started oxytocin (a posterior pituitary hormone) a little over a week ago.

I am once again back on fludrocortisone too.  Aldosterone (that fludro replaces) is another adrenal hormone that regulates sodium and fluid balance in the body.  Aldosterone deficiency has some pretty nasty symptoms and signs, such as nausea, dizziness, loss of appetite, headaches, low blood pressure, high pulse, etc.  BUT, very long story short, we found out I was on too much sodium and not enough of the hormone to help me retain it.  I was adding an extra 2,500-5000+ mg/day on top of what I ate to keep my blood pressure high enough.  And, guess what, it doesn't work as well as enough hormone with just a touch of extra salt dose.  So, I went off the sodium for a few days to try to flush it out of my system before upping my dose.  That was nasty, but with the first dose of fludro my symptoms disappeared.  I'm now taking 1/2 of a fludro twice daily, eat normally, and at most have to add in one or two grains of coarse sea salt (but almost never).

We'll keep testing every month or two to make sure my current hormone replacement is appropriate, and to watch for further losses in pituitary function.  The next hormones in line are generally thyroid (TSH) and cortisol (ACTH).  But so far my thyroid is holding out.  Don't ask me how since I already have hashimoto's?!  But, I haven't even needed thyroid replacement for a couple years.  Most of the hormone replacements I'm on increase your need for cortisol, so we're watching that closely and I have a very low-dose hydrocortisone prescription to use with dosage increases so that I avoid adrenal crisis.

All that medical mumbojumbo said (I swear that was the condensed version), I think we've finally figured out my roadblocks!  As I keep telling people this week, I went from "sick and tired" two weeks ago, to "plain old tired."  I mean, I'm still hypopit, and hormone replacements aren't perfect.  I still have to adjust doses depending on temperature (fludro is a PITA), exertion, stressors, etc.  And I still have to recover from Cushings' extensive damage, but I FINALLY feel like that is actually possible!  

Since the fludro/salt changes, I've been able to do more during the day and not be deathly ill by nighttime.  Yesterday I even did "Easy Yoga for Beginners" from amazon prime streaming.  It was basically stretching, and probably 75% of it was on the floor.  I couldn't even hold my arms up straight for the warrior pose when we got to it, which was a bit disheartening.  Yes, Cushing's and AGHD did THAT much damage.  

I did have to stress dose by taking some hydrocortisone late last night (but that's as much about the GH dose increase I'm adjusting to as the extra exertion).  I didn't feel sick exactly, but my bp was low, my limbs felt like lead, and it felt like I didn't have the physical energy to breathe...rather literally.  I took the hc to be safe.  My BP didn't even hit 120/70 with it and I slept great so it appears that was a wise choice.  

I'm SO sore today, so I'm not going to let my muscles rest a bit, lest I injure myself, but hopefully tomorrow I can do it again.  I really want to get back to an active lifestyle.  I WANT to be able to cook and clean.  I want to be able to turn on music and dance around the living room with my kids, or go on a walk, go shopping, meet up with friends, etc.  I still have to be a bit careful, but things are looking up.  I am really hoping that my muscle, stamina, and energy increase quickly.  Exponentially would be great!  ;)  

Saturday, May 2, 2015

The Magic Foundation Adult Convention

The adult program and registration details are now available here!  

I'm so excited!  I'm planning to attend.  My endocrinologist is speaking Sunday, and some of the topics I look forward to most right now are things like dealing with insurance, oxytocin replacement, how hormones interact, hormone testing and replacement in hypopituitarism, and solu-cortef pumps!  YAY! 

Thursday, April 30, 2015

Why I Think I'm in Remission, and why this isn't the end.

A friend of mine requested I write this post. This is a question everyone asks, and often repeatedly: "Am I in remission?" or "Is this symptom I'm experiencing the start of Cushing's coming back?"  I mean, lets face it: this disease is a mess from start to finish.  Nothing about it is easy.  Nothing is straight forward.  Nothing is black and white and nothing is clear and obvious.  Heck, I sat in a conference room full of Cushing's Patients a year ago and listened to a top endocrinologist in the Cushing's world tell us that one of his doctor-friends had recently said to him "If I had to deal with Cushing's all day every day, I'd kill myself."  Now, this was said somewhat jokingly and we all laughed, so don't take that the wrong way.  He was discussing the ins- and outs- of testing and how complex it is, with high recurrence rates to boot, and that it is complicated for the doctors and confuses them too.

I am pretty sure I'm in remission.  I see more and more signs of that for sure and very few signs of Cushing's now, even though I struggle every minute with the damage it has done.  My life is still a mess.  My health is still a mess.  My symptoms and labs STILL confuse my doctors constantly.  I'm still confused daily by what my body is doing.  No two days are alike, and yet the symptoms caused by various hormone imbalances are...and trying to tease out which hormone is causing which symptom, and whether it is high or low, is just a blast.  A blast, I tell ya.  I still have to watch for whether Cushing's will come back and I am still walking my "tight rope" but it does look like I am in recovery from Cushing's itself.

There is not one diagnostic test nor one symptom by which to judge.  It is not that simple.  Again, it's a weight scale like that of diagnosis.  Even the specialists are informed by the tests, but rely heavily on what *we* report for signs and symptoms, almost more than the testing. So, I'll go through some of what has informed my opinion on the matter for my own remission:

Sleep/Insomnia  I am able to sleep now.  I think I could even nap during the day if I didn't have 6 kids running around.  Before I started my growth hormone replacement, I still had issues with sleep, woke up frequently, didn't feel rested when I woke in the morning, and I had difficulty falling asleep, but it just had a different flavor to it.  I was tired but couldn't sleep instead of wired and couldn't sleep.  It wasn't like I was "bouncing off the walls" with racing thoughts, etc and signs of high cortisol, I simply couldn't sleep well.  Luckily, once we diagnosed my AGHD and replaced that hormone, I started sleeping better from day 1.  Now I have no insomnia or sleep issues.  I can fall asleep at a reasonable time (that adjusted gradually), and I wake up at a reasonable time...kind of.  lol  I'm still tired a lot, but that's recovery.

Appetite/Craving  I can skip multiple meals a day.  I shouldn't, because it messes with my blood sugar which messes with my liver, growth hormone/IGF-1, and can cause some adrenal insufficiency if I'm on the edge, but I have to actively remind myself to eat most days.  I also can't eat even half as much as I used to.  I didn't think I ate too much quantity before, but now some days I have difficulty finishing a small home-made burger (and I do mean small) or I can only eat half of a sandwich.  I'm full.  It is like my stomach has shrunk, except it didn't have a chance to do's literally that my cortisol is lower so my appetite is lower.  It's that direct of a connection.  I also crave carbs and sweets a lot less.  I wasn't a huge carb eater before because my body always seemed to have a greater need for protein and vegetables, but I did crave them sometimes.  Now I can't even eat any form.  I have a hard time eating bread, even freshly homemade bread straight from the oven.  That too was a gradual change, but it's a pretty obvious one.  I can skip the icecream even when others around me are eating it, and I don't feel like I'm missing out.  It just doesn't interest me.  I'm still a chocolate fiend, that hasn't changed.  But you know what I crave these days?  The only thing?  Melted, salty, fatty cheese.  I mean, I liked it before, and loved Pizza, etc...but this is constant.  Weird, eh?  I know my body needs the salt, but perhaps it's my body's way of saying I need the fat too.  Time will tell.

Acne  I still have acne issues.  It's still obnoxious.  I have scars everywhere and I still get big, cystic acne, but I think it is slowly, very slowly fading.  Maybe that just takes time (it's been about 6 months since I switched from symptoms of failed surgery to symptoms of remission), or maybe the growth hormone replacement is helping with that too (when I became hypopit at 6 months post-op, I lost 100% of my GH production).  I can say that the cystic acne doesn't show up at specific times in my maybe it is just working it's way out of my system.  The acne I get that is related to my cycle is MUCH more normal.  I've not experienced it in so long it is weird, but I simply get more blackheads or little whiteheads around PMS time and they disappear quickly without becoming massive and cystic.  It's crazy.  Hopefully the trend of the cystic acne dissipating will continue.

Weight Gain/Loss  I've mentioned before that in my high cortisol cycles I could gain around .5-2 pounds in a day, and in a low cycle I could lose .25-1 pound in a day (something like that?) without any changes to my diet or activity, it was pure hormones.  So, I would go up and down over the course of a month, but I gained faster than I lost and it was an obviously upward trend.  Now I still have some ups and downs in the weight when I increase my GH dose and that causes swelling, or when we went on our trip to Seattle/OR a few weeks ago and ate lots of yummy food, or my fondu-birthday gift we indulged in for a few days, or when my period starts...but I'm on a definite losing trend.  I'm down 19+ pounds from my highest weight, again without any changes to my diet or activity level.  I'm still pretty much chair-bound (one step up from bedridden), and my appetite has changed as stated above, but I still eat the same basic foods and still indulge in my chocolate cravings.  I'm at the point where I desperately wish I could physically cook and exercise (or simply be active) like I once did.  I bet the muscle would pile on and the weight would fall off.  I think I've gained just enough energy in my 3 months on GH to *want* to be active and do things even though I still can't, whereas just 2-3 months ago I was so physically exhausted I didn't even consider it an option, so it is actually a bit more irritating and depressing right now!  lol  Talk about an odd turn of events.

Tests  My post-op cortisol testing was too high, but wasn't horribly convincing.  The neurosurgeon had obviously removed the bulk of the problem, but there was still some residual something going on.  I went on cortisol lowering medication, which I couldn't seem to get stable on (despite having taken it before surgery and doing relatively well on it).  All in one month, we found out that medication was causing me liver damage (it's a known problem, thus the reason I was being screened...but this was the least problematic of the possible medication options), an MRI showed that I had developed empty sella (my pituitary was being smushed by CSF coming from the space surrounding my brain above --this can cause a loss of pituitary hormone production), and my IGF-1 (a marker for growth hormone deficiency/excess) had suddenly dropped by about half, to below range.  I left that appointment with a lot of lab work to do.  I was still testing for Cushing's Disease re-diagnosis, and also adding in more pituitary hormone labs to see if and how the empty sella was affecting my hormone levels.  As it turned out, from a GH stim a few months later, I had severe adult growth hormone deficiency (my body failed to stim at all), and we then began watching the other pituitary hormones to see if they would follow suit.  The jury is still out on that one.  I have "low-normal" results on various hormones, with accompanying symptoms, so only more time and tests will tell.  But, I dutifully did a few more of my Cushing's tests, but then stopped about half way through those (again, it was a good 8-12 total serial tests, so it takes a while).  I just didn't feel "high" when I should have, so stopped testing.  My endocrinologist didn't require me to keep testing to confirm it was gone, he trusted that I knew what I was talking about.  (I *may* need to retest when the AGHD is fully treated, but I doubt it at this point.)

Vitamin D and Ferritin  These were surprising and unexpected.  Some of it may be due to the liver damage (that can affect these results), but after over 3 years of high-dose replacement with 50K iu's of D3/week and 6 ironsorbs/day not getting me into the "normal range", those results suddenly were fine.  I backed off on my D3 and iron per my endocrinologist's request, and the D did fall somewhat, so I'll stay on that (I mean, I DO live in a rainforest in Alaska, and sit indoors in my chair all day!), the replacements work!  My iron has been stable since, despite my ferritin having been at a 4.8 when I started - ie, I needed infusions...and badly.  I think this is another sign that the excess cortisol has left my body.  I may not be suddenly "cured" from these deficits, but the replacements for them actually do what they're supposed to.

Buffalo Hump  This one I didn't notice until my husband pointed it out.  He was rubbing my neck one night, about 5 months ago, and said that my hump was suddenly soft and squishy instead of hard and solid.  My hump had always been a smaller one, but it was there.  Now, a few months later, I just have regular fat skin there.  It may always have a slight hump-like appearance, or it may fade as I lose weight, I don't know...but I'm happy.

High/Low Cycling  This is the biggy.  I still feel like total crap during my period...I still have lower cortisol then, but I don't get highs any more.  There were two days total at some point about 2 months ago where I was able to do more, but it still didn't feel "high", I just felt kinda human again.  And it never came back.  Instead I feel pretty low most of the time, to the point that we are watching me for adrenal insufficiency.  I stray into the "may need a cortisol stim test" range some times, and will continue testing that every so often.  I don't seem to have any adrenal reserve at this point, and when I do much of anything (and I mean anything), I start developing symptoms of adrenal insufficiency.  When I started my GH replacement shots, I had a nasty reaction that my endocrinologist feels was due to the GH catabolizing cortisol, making my cortisol levels drop too low.  Luckily I didn't go into crisis, but it did mean it took me 3 months to get onto the dose my endo wanted me to start at with GH.  We don't know how much I'll need in the end, but I have to be very careful increasing my dosage now because it will lower my cortisol further each time.  I have the feeling I will be panhypopit eventually (lose more pituitary hormone production), thanks to the empty sella, but you never I'm trying to be very careful and not take hc unless I absolutely need it (when I go AI) in case there is a chance my pituitary and adrenals will recover.  I appear to have no adrenal reserve (just enough to get by if I don't do anything, but not enough if I exert myself, am ill, go through a period of stress, etc) and have been trying not to surpass my limits which really is a bit of a crap shoot, to be honest.  (Again, the tight rope analogy from earlier this month.)  But, back to the cycling.  I'm not cycling.  I'm not high.  This is THE most clear reason I don't think I'm dealing with active cushing's any longer.

All that said, being in remission from Cushing's is obviously not the end.  Do I sound like I'm healthy?  I still can't be active.  I still feel ill in one way or another most days.  I've traded Cushing's for hypopituitarism.  And, frankly, I'm good with that.  It is still obnoxious and complicated, but it is far more treatable (if/when my hormones stabilize and we are able to figure out precisely which I need to replace and how much).

Who would have thought that some measly CS fluid would have killed off what was left of my Cushing's?  It's a major blessing; a totally unexpected and unusual one.  The rest of the damage that has caused (or is still causing) will still be a lifelong struggle, but hopefully I'll get some stability and some semblance of a life back, becoming active and relatively healthy again.  I will always have to keep an eye out for the signs and symptoms of Cushing's to return, and many live in fear of that with each symptom that pops up.  I will worry about that when I have reason to worry, but right now I am enjoying that I no longer have to fight that battle. 

I've not experienced a return to what and where I was before, that rarely happens, what I am experiencing is a new body, with different needs, limitations, etc.  It is a new day and I will be a new me. 
Now my job is to learn about this new body, to help it recover and be healthy in it's unique challenges, and to make the best of it.  It'll take some time.  It's intimidating, daunting, and tiring, but I think I've moved through the grieving process to an acceptance that that previous life and previous me is gone.  I've buried her and mourned her loss.  Like any other loss, grief can return unexpectedly, but it is generally momentary.  I know she's gone and won't be coming back, and I can be grateful for what she taught me and enjoy the memories.  What I have now is discovery.  Who is this Cushing's-Free Catherine?  What are her limitations?  Her strengths?  Her abilities?  What brings her joy?  I look forward to meeting this new Catherine, and learning all about her.  It makes me nervous because it's all new, but it is also exciting.

Wednesday, April 29, 2015

Testing for Cushing's, MN Saliva

Oh my goodness!  I just realized I forgot salivary cortisol levels in my previous posts about cortisol testing for Cushing's Disease!!! 

Midnight Salivary cortisol levels are checked guessed it...Midnight, and use a sample of (You guessed this one too, didn't you?) saliva.  Yep, spit.  This is another "Gold Standard" test used today by endocrinologists to diagnose Cushing's.  It's a simple test you can do at home, freeze, and take with you to the lab when it's convenient to you.  It is especially helpful for cyclic patients.  You can wait till midnight (really, it is often done at 11pm) and if you don't feel high, you don't have to test and can save it for another night.

Because cortisol should be at its lowest at night, at nearly zero, and because Cushing's frequently causes high cortisol at night (flipped diurnal rhythm), it is a great time to test for abnormal highs  Anything above 0.09 on a midnight salivary cortisol is diagnostic for Cushing's, assuming you didn't accidentally contaminate the sample (via bleeding gums, cosmetics, etc).  Generally contaminated samples are sky high, though, or are marked by the lab as contaminated. 

The collection containers may be little plastic tubes you spit into, but more often now they are little cotton swabs that fit inside those tubes.  (Think of a mini-tampon, and you've got the right idea.)  You don't eat or drink (or brush your teeth) for X amount of minutes before the test, and then you put it in your mouth and let it absorb as much saliva as you can.  Then you place it in the tube, seal it, label it, place it in it's bag, and then in the freezer till the next day you go to the lab.  I don't know how long these hold, so I wouldn't wait forever, but you can definitely go a few days.  LabCorp seems to be using a newer collector model that to me looks like a mini lol.ipop with a plastic handle.  Whatever the method, it's all quite similar. 

*Note that there are a number of saliva testing labs online that do it via the mail...these results are generally not accepted by doctors, better to get a doctor to order the test and do it through a standardized lab if you want to use it for diagnostic purposes*

Need-to-Know Cushing's Basics

Here are some posts that I made last year that I think would be helpful to review for basic info (and some in-depth info), if you don't already know your way around a Cushing's Diagnosis:

Symptoms of Cushing's 

Types of Cushing's Syndrome

Cushing's Tumors

Distinguishing Cortisol Highs and Lows

Treatment for Cushing's

And there is a series of posts I made this month that goes through commonly-used tests starting with: "Testing for Cushing's, Introduction"

And, if you want to get a feel for what the struggle is like?  Here's a monologue I wrote that was preformed readers-theater style locally: A Big, Fat Target