Friday, December 31, 2010
I thought I was safe.
I should know better! I think my optimism is perverted beyond all redemption.
It started with a random wheeze one day.
Huh, I thought and went about my life. I was in the midst of muscle cramp hell so was a little distracted.
Last night a knot of snot took up residence under my breastbone and the hacking cough to nowhere started.
I woke up in the middle of the night with a cat purring in my lung. Just from breathing from my nose, which is bad ju-ju. Anything that shakes, rattles, rolls or whistles, whines and purrs with the gentlest of breaths is baaaaaaaaaaaaad news. Especially with an uproductive cough.
We'll see what happens. It's a bad infection for someone like me; strong and sticky in all the wrong places. I don't want to take any steroids inhaled or oral for it. I don't really want to start Singulair again. So let's cross fingers that it is mild for me and I don't need anything more than a rescue inhaler or nebulizer treatment.
I am not willing to lose ground on the steroid front. The adrenal glands are the priority, not my ability to breathe.
The muscle pain has finally stopped. Things have finally improved and I have successfully weaned down from 30 to 25mg. I am not going backwards. I refuse.
Wednesday, December 29, 2010
I was able to verify the test results with the endo today.
Baseline Cortisol: 13
30 Min Cortisol: Drawn too late to matter so it's not relevant.
60 Min Cortisol: 20.6
Now, there are about a million ways to interpret these results.
The endo I am seeing is being very conservative, almost rigidly so with this idea that I'm fine.
Some medical literature, well respected and well researched literature, would classify me as borderline and recommend further testing.
Other medical literature says I failed the test and need more testing to determine if I'm primary or secondary.
And even other medical literature would ask why the hell we are testing anything since the test results are invalid so long as I'm on any amount of steroid.
Adrenal Insufficiency (AI) patients (the real experts!) fall into three camps: I flat out failed the test OR the test is null because the timing was off and the test was so stressful OR it was not relevant unless I used another steroid for a few weeks before the test, one that doesn't affect the test like Hydrocortisone or Prednisone.
Endo #2, by the way, felt testing was pointless while on steroids.
Endo #3 feels that anything with a final value over 18 or 20 is fine, even though it was supposed to double to 26 and did not. The baseline of 13 is either low per medical literature or suspect, it is not actually as good as I had initially thought.
So pick your perspective. There's a study/data to support nothing being wrong, a borderline case of adrenal insufficiency (AI) or full blown AI.
What do I think?
Well, I am pleasantly surprised by the 13 baseline. Remember, I've had baselines of 1.9 and 5 so this is not without hope for me. So even though 13 is not great by medical standards, I'm actually pleased. Like I said in the previous post, I am hoping hoping hoping that I'm coming back from the abyss.
The thing is I don't know anything for sure and it is awfully hard to suffer through this muscle pain and not know if it's doing me any good.
Ergo, I would like another Cosyntropin Challenge when I get to a sub-physiologic steroid dose just to be sure. Because we really haven't established if adrenal function is recoverable or not and the fact that I had weaned and then couldn't live without steroids all of a sudden is kind of disturbing.
Although apparently I am the only one who is disturbed.
Endo #3 flatly refused to order another challenge test today. Instead what is happening is all my symptoms are being farmed out to other specialties as if nothing is related or derivative. As if my body is spontaneously having disparate unrelated problems.
I'm now scheduled for a tilt table test because that is apparently the key to understanding my bizarro blood pressure. Only I don't expect much because my blood pressure isn't wonky on a consistent basis, not enough so to perform properly for a medical test. I fully anticipate that test to show nothing.
Also the test appears to be used with fibromyalgia and chronic fatigue patients; throwaway diagnoses that garner even less respect and care than adrenal issues. NOT the direction I want to go! I am not running for the worst diagnosis to get medical care for prize.
As for the rheumatologist (sp?), I am holding off on that as I think the muscle pain will fade soon. It was triggered by the challenge test and I exacerbated it by splitting the steroid dose and also decreasing it by 5mg. Why I wondered why I hurt so bad, I don't understand. You would think I've never done this before.
I mean I knew it was steroid induced but it didn't occur to me until just now to wait it out and just reiterate with the endo that it's from the steroids. If it goes away, it's not a problem, right?
My hope is by the time I get down to 20mg of Hydrocortisone (which is sub-physiologic) that I can call the endo and basically throw myself at their feet and beg like a puppy for another challenge test. Given that the science is so wishy-washy on my results, it seems only logical to gather more data to see if a definitive conclusion can be reached.
I have been told not to stress dose. That if I have low bp, bilateral back pain, nausea etc... that it's not adrenal (that is kind of a dangerous statement, but ooooookay). That I am on enough steroids that I can't have a crisis (that is patently not true).
So as professional as endo 3 has been, I really haven't achieved much. I continue to feel like I'm the only one who ever has a clue and wonder why it is that patients are the only ones who seem to ever read the medical literature.
Let's hope it's the case that the HC wearing off and leaving me hanging (painfully so) for half the day is finally prompting my brain to do its job.
I've sent a request for my medical records so I can verify the actual test results. I managed to finagle the numbers out of a nurse, but can't rule out the possibility that they gave me wrong info.
If what the nurse told me is right, well yeah I am making some cortisol*, but the values didn't double and weren't high enough in total to rule out Secondary Adrenal Insufficiency.
Also, if the nurse is right, the endo maybe misread my results. So, yeah, I need my medical records.
Best case scenario, this test shows some recovery going on.
But I bet I will need another challenge for comparison to know that for sure.
I also bet the endo will not be happy that I want another test.
I am so tired of doctors. Over it.
The endo did not give me a taper schedule and actually gave no instructions at all. So I am over here playing around with things. Again. I'm experimenting with my dose because...
The muscle cramps are awful. They have been awful. All those times I mentioned that they were improving? Were when I had high levels of hydrocortisone in my system which minimized the cramps. Come 3 or 4pm, I feel like I'm being squeezed by a python.
It is incredibly painful and debilitating. It lasts for about 5 hours and then slowly improves (possibly a sign that my brain is realizing it needs to do something????).
The endo thinks I should see a rheumatologist (sp?) and is not connecting the pain to the steroids wearing off. Nor do they care. They are suffering from 'all your results are normal by my standards so you are fine and should go away now' syndrome.
Have I mentioned that I am SO Over It?
The endo also doesn't want me to split dose because then I will have too much HC in my system and not enough time with it out of my system.
While I respect and understand that position, it is not going to work for me. So I've been experimenting, trying to push back the muscle pain until 8pm or so. Most adrenal insufficiency patients do a morning and mid to late afternoon split dose. I don't need to do such a late second dose, I can do it around noon, which means I still have time with no HC in my system.
Unfortunately, that means the pain and muscle spasms hit right when I want to sleep. That's not going to work either.
Today I'm trying to delay the steroids as long as I can in an effort to push back the cramps. We'll see how that goes. As it stands right now, my brain is kind of not working well. If this post makes zero sense, that's why. Not enough steroids.
And I need to call the endo and point out that they really never gave me a game plan.
*See also how estrogen birth control pills and PCOS estrogen dominance can inflate cortisol. Which is a good thing for me I think. Some AI patients report baseline cortisol levels as high as 16 while on the pill. I was not that high, but it was respectable (I'm holding off on sharing values until I can confirm them).
By the way did you know that progesterone is a precursor of cortisol and that I don't really make any? Interesting, no? This is all so much more complex than one blood test.
Sunday, December 26, 2010
I went for a walk.
On Christmas Day.
A mile long walk in the snow.
With the dogs.
With the hubby (because we have a relative here who can watch the toddler while we do such wild and crazy things.)
It was marvelous.
Except I paid for it later by almost completely crashing. So disappointing.
And today my head is spinning and I'm having a hard time getting a grip on the day.
But the muscle cramps are better. Not gone, but much less intrusive.
My blood pressure tried to nosedive on Christmas Eve. I responded by face planting into a plate of cookies and that seemed to do the trick.
Despite the ever constant reminders that something ain't right, I do feel pretty good now on the Hydrcortisone. Soooooo happy to not have the anvil pounding head aches anymore. I just wonder if regular exercise will ever be possible anytime soon? I would love to go to a Zumba class this week, but that would be very unwise.
Blood test results will be in next week. Crossing everything I've got that there's some forward motion.
Thursday, December 23, 2010
It was not a happy insight, but apparently it was something my subconscious really wanted me to know.
I don't know if I was compartmentalizing too tightly or what, but it's behind me. For now.
Aside from the impact of my new super emo-ness, yesterday was the best day yet on the Hydrocortisone. No headache. BP didn't spike. The wall didn't bitch slap me. However, I did have some back pain and stomach pain as well as fatigue seemingly related to my drama-rama.
The muscle cramps are also intense once the HC wears off. I had a moment of concern the night before when just breathing set off all sorts of conflicting muscle spasms throughout the abdominal wall. Reminded me of Metformin's side effects, where everything contracted at the same time--try walking when that happens and see how it goes. It doesn't! So to have my stomach lock up from breathing made me a bit nervous.
It's not something I know how to fix anymore. I've stopped taking vitamins, even though that doesn't prevent the muscle cramps. I have no idea if I'm high or low in magnesium, potassium, calcium etc... and am afraid of making any imbalances worse. So I don't do anything except hope it passes and that the blood work comes back showing something that can be fixed.
1. Muscle cramps
2. Flank/back pain
4.Shortness of breath
5.Loss of appetite
6.Mild drop in BP
I didn't get the Hydrocortisone into my system until after noon which probably explains it. The challenge only administers 1mg of cortisol, which is not enough.
The cramps could just be from the switch back to HC from prednisone--my muscles are pretty cranky. My stomach feels like I've done a billion sit ups.
I wonder if this is why the IV/blood draw attempts were so painful? My hand actually throbs just from holding things due to the massive bruising. The pain seems excessive to me and I'm irritated with myself about how whiny I am about it.
But it huuuurts.
I was over myself about 5 hours ago, you?
Family starts arriving tonight. I hope to make sugar cookies among other things and have the neighbor kids over for an Xmas pizza play date. We wrapped the presents last night. All done with shopping both for presents and holiday food. The house is kind of clean if you don't look at anything too closely.
Wednesday, December 22, 2010
Previous stick record: 17
Previous time record: 1.5 hours
So guess how much butchery it took today?
45 minutes to get the IV, which promptly died after yielding one tube of blood.
20 minutes to get the next vial of blood.
Another 20 minutes for the last vial of blood.
Which they couldn't even fill all the way.
I have bruises that would make a heroin addict wince. Never has it hurt so much to give blood, but they kept trying to flush with saline so I got painful bubbles under my skin.
Plus I ruined my shirt running hot water over my arms. They clean the sinks with bleach so the water splattering my shirt had a touch of bleach in it. Glad I didn't dress up.
So basically, major suckage. I have terrible veins. The nurse told me she'd never seen someone so bad in 15 years (which I hope that is not a common experience because boy would that suck if my veins really were the most awful of awful).
When I'm a good stick, I'm a very very good stick. When I'm a bad stick, I'm very very bad. No in between.
Apologies to everyone working in health care.
Now let's pray the test results are meaningful. Although I'm a little concerned how valid the results will be given it's a timed test and they couldn't do any of the draws on time due to my crappy veins.
Tuesday, December 21, 2010
Right now the struggle is staying positive in the midst of a sea of negativity.
Did well yesterday on the Hydrocortisone. Hit the wall right around the time I had to go to work.
Murphy's Law of Chronic Illness: You will only feel good when you don't need to.
Oh the wall hurt. BP spiked. Major head ache. Wanted to lay down and never get up.
Today is so far so good, but it's not time to go work now is it?
In real big news, the toddler ate broccoli coleslaw TWICE. Yes, she ate vegetables. Call CNN and People Magazine. Toddler eats vegetables and...
ASKS for more.
World Peace is next!
Monday, December 20, 2010
I have not done that in way too long. This morning I am able to be the parent I want to be.
But I'm only a couple hours into the day so...
I tried to articulate to the endo how I thought two days of prednisone might help my body make the switch. Not sure if I stated it well, but here's hoping the break got me over the transition hump. Sometimes it seems if you take 2 steps back then you can take 15 forward.
Sleep would be nice. I go to bed early and can't sleep. When I do sleep my gut wakes me up at 4am pretty regularly--I am still having pain and, in the wee hours of the morning when it has me squirming, I swear I'm gonna call the doc first thing, but then the worst of it passes and I don't call.
I really need to squeeze in a GI doc, sooner as opposed to later. But I put it off and put it off because I just don't need anything else to do. At least I don't need an alarm clock.
As for the rest of the mess I'm dealing with, I'm working on my resume, contacting my references and hoping I can do this. The timing is for poop, but I'm not applying for everything and anything, there just happens to be one job for my skill set open. So I have to apply now as opposed to taking more time to deal with my stupid health.
The dearth of positions in my field, even in a good economy, makes the odds of me having to report to a job as of Jan 1 pretty low. On the other hand, I'm in a niche field where it's hard to find good people, which usually tips the odds in my favor. We'll see what happens and hope I can pull myself together to make it all work.
Won't know until I try.
Sunday, December 19, 2010
Multiple things deconstructed in bizarre ways on Friday.
Until my life looked like a sliced and diced Cubist painting; oddly formed, edges sharp as razors.
Nothing I recognized or wanted to be associated with.
Basically, Friday was when everything else started to suck too. It's not just my health anymore.
The timing is amazingly craptastic.
So no sleep at all Friday night. Between the stress and the toddler coughing most of the night, I couldn't sleep.
I did not volunteer at the pancake breakfast although the hubby went. The toddler had a great time. She actually talked to Santa, which is a pretty big deal as she usually tries to crawl back into the womb due to shyness.
I was tired due to lack of sleep but able to withstand it all due to the prednisone. Just couldn't hack the early morning volunteering gig. Definitely felt better on the prednisone. Big time.
Now, of course, the lack of sleep is hurting and lucky girl that I am, I get to start Hydrocortisone (HC) again tomorrow. I'm bummed I didn't get to take better advantage of my time with the prednisone but I guess I should be happy I was on it at all. With all the symptoms I had Friday, the subsequent implosion of my world would've caused problems if I'd been stuck on HC.
So to wrap this up, my life is now a mess and I have to get better asap or I'm going to drown.
Saturday, December 18, 2010
All I can say is I had one AI patient warn me that HC threw them into a crisis and landed them in the hospital.
They take prednisone now.
Adrenal stuff is the weird shiznit.
Or maybe it was just the BP meds. Maybe my high blood pressure has just gone back to normal. Which is also weirdness of the yo-yo variety.
Regardless of the weirdness, we agreed for the weekend I'm doing prednisone and then I'll go back to Hydrocortisone on Monday. If it doesn't go well, I call back.
Just so we don't have to worry about me totally crashing over the weekend.
Which is a blessing as I am volunteering at the preschool's allegedly 'free' breakfast with Santa Claus (since when did free mean I have to provide $20 worth of food?) and going directly out-of-town for the extended family Christmas/ Grandpa's 80th birthday party on Saturday. It is a go go go day.
Not a good time to be struggling and not the kind of thing I can survive without some steroid support.
Friday, December 17, 2010
Out of desperation because I actually don't care for pickle juice. Or pickles. Not anymore!
About a half hour later I felt alive again.
My blood pressure wasn't terribly low. It dropped from 125/81 to 100/65. Last night it was 90/60 again.
But I can't deny the salt is saving the day.
So I alerted the endo to the fact that I am now drinking pickle juice in order to function.
What they'll make of that I don't know.
I'm going to stop the BP med too because I'm sure that isn't helping. However I don't think the drops are from the medications, because I've been rock solid at 110/70 for over a week now with nil variation. Without the medication I suspect I would've had one of my 140/90 spikes followed by a 90/60 or worse crash. Now my spikes are just 125/81.
Of course I could be wrong, but my sense is that this is not the BP medication.
I also am formally retracting my Cushing's freak out of last night. One because it is not uncommon for me to have fluid fluctuations just by changing the steroid dose. Combine that with a lot of sugar consumption of late and I think it's understandable why I feel like I'm holding Niagara Falls in suspension.
Nor am I going to declare any stretch marks red until the hubby looks at them. Because now I'm not so sure.
My concern is that since the Hydrocortizone is only in my system for a short period of time when my body is used to a 24/7 prop up from prednisone, that there's a slow, cumulative degeneration of my situation.
Not that I know anything.
But something isn't right.
We'll see what the endo says.
The salt helped immensely.
What a difference.
It's kind of stupid typing it out, but do you realize how much better things are when you don't feel like you're going to pass out?
From fighting to keep my eyes open to just merely being tired.
I could remember where the remote was and able to realize I didn't know where my phone was.
You know, the ol' brain actually started synapsing again.
Of course, Hubby ignored the messages I was emailing him.
Of course, the toddler had swiped my phone and shoved it in her backpack (which she'd been lugging around all day) when I wasn't looking.
Good thing nothing bad happened.
It was shocking how fast it hit. How unaware I was of the decline until I was on the edge of not being awake anymore.
I have to do better.
Thursday, December 16, 2010
So I thought, well let me see if I can do 20mg of HG instead of 25mg.
That went over like a bug hitting the windshield of a supersonic train. In fact, I'm writing this post primarily to keep myself awake.
I don't know what to think. You can feel like a dead sloth with too much steroid and too little steroid, so maybe I'll give it another day and see if I adjust for the better before bumping back up.
At least my gut finally seems to be healing. I was able to sleep on my side without pain for a few minutes this morning.
Oh crap, just realized my blood pressure is way low. Hubby is at school. Toddler is running amuck and I am now drinking pickle juice.
And texting hubby that he might have to come home instead of finish his class and go play hockey like he planned.
Oh crap oh crap oh crap.
Now, if that is not a cure for all that ails a person, I don't know what is. I immediately felt better.
The dance recital was fun and funny. My old, shoddy camera couldn't get enough light for a good picture of the performance, but I caught a few candids of my girl busting a move before the show.
Reminds me of modern dance from the 60s. Very funky. I love it. She has great musicality even if she doesn't know how to plie or point her toes yet. By the way, the required costume was PJs if you were wondering about the outfit; it's PJs with a dance skirt.
Then we came home and I threw some cookies in the oven to properly commemorate the occasion. We read Christmas stories and then snuggled in our big bed watching a Christmas cartoon before packing her off to her bed.
It was nice.
I think I'm adjusting to the HC. I'm not 100% but I'm not too bad off either. Sometimes I feel perfect, other times I want to stop, drop and nap. The headaches aren't for the faint of heart either. Hopefully with time I can hit 100% like I did right before I switched from the prednisone. For now, I guess I just lay back and enjoy the extra sleep. Nothing I can do but accept it, right?
As you maybe can tell, I've been working on my game face.
Just yesterday was the Preschool holiday program. Which was fun. The toddler had a good time. Which is a polite way of saying she was allowed to eat unlimited amounts of sugar. Ugh. Mommy paid for that later.
She wore her skirt and got lots of compliments (even though it's too big as not only can I not sew, I can't measure waists either). I had a tough time getting a decent pic, the candy cane gangsta shot below was the best I could do, it's just been a rough couple of days for pictures.
And yes that's candy cane red smeared on her face. No, I don't know what happened to her legs. Apparently they are detachable?
Tonight we did more Xmas shopping. I did NOT feel up for it at all, which is why we went as a family. Didn't think I could handle driving and shopping. Pathetic I know, but this is my life. Luckily, the toddler was super super mellow and copacetic, killing us with the cute.
So coasting on her chill mood, we cruised the Christmas lights while listening to Christmas music. She loved it, every single light bulb was admired. Hubby and I got a huge kick of the people with skulls and scarecrows still on the lawn. One house owned just one single solitary strand of lights and they put them up anyway.
They looked lonely.
People are funny.
Wednesday, December 15, 2010
According to the toddler Santa is coming tonight, so if the big guy is changing his schedule, well, you've been warned.
I am taking 25 mg of Hydrocortizone now. I don't think that 1 extra pill is doing much. When it wears off it hurts. Big time. Ouch.
Today I will be cleaning house right when it stops working as we have the toddler's very first dance recital tonight (last night by the time this posts) and the grandparents will be visiting.
I'm in a weird mood that does not feel like me. Kind of down and out. Unhappy. Feeling pretty much ganged up on by my body and it's medicine that's holding me down so I can't even defend myself against the next sucker punch.
The drama with the damn cortisol test was the last straw and I've been having a bit of a break down. Even though they did squeeze me in this month still.
This is month 9 and I'm no closer to any resolution than I was back in March/April.
I've read some unpleasant things that I can't unsee. Did you know some of this hormone autoimmune stuff can be cancer?
I had no idea. I merely thought it was all about replacing hormones and going on your merry way.
Assuming I understand everything correctly, if it's an autoimmune thingie then I enter a category of ailments that could include cancer.
Now I really don't want to have Hashimoto's. Or nodules on my thyroid or anything at all growing in my lungs.
I need a time out, where all this just stops for a while but I don't know how to make that happen.
If I am lucky maybe I'll get a call that the CT scan couldn't find the growth or that, if it's still there, it didn't grow. Wouldn't that be nice?
Tuesday, December 14, 2010
Because I was too out of it to argue.
Then the pulmo gave me attitude in Nov saying they ordered the test and I didn't show up.
And I was like, nuh-uh, you told me wait two weeks and I couldn't wait that long.
Then the endo at the time didn't require a test as they were comfortable meshing my history, my symptoms and the sequence of events around them.
Plus I was too far gone to wait another day, in my humble opinion.
Now the new endo ordered a cortisol challenge test. The secretary tried to call me but the call didn't go to voicemail.
So they couldn't leave a message, but went ahead and set me up for a cortisol test yesterday and never tried to call me back to tell me about it.
Since I am not telepathic, I missed that test.
(I hope they don't bill for that. It wasn't my fault.)
Now I have to wait until 12/30 because they are completely booked to infinity and beyond.
No wait, they screwed up. Again. Now I will have the blood test on January 3rd which is SO awesome because it will be completely self-pay.
Clearly the world will end on that date because there is no way I am ever going to get a cortisol test. Or be able to afford one by the time they do get their act together.
Congratulations health care in America, you've made me cry.
I left a message with the secretary begging for them to see if they can do anything this month still. Anything.
As for the hydrocortisone, the 20mg is not so hot. The fatigue is excising options like going grocery shopping, exercising, driving competently, staying conscious and eating. So I have called to get the dose adjusted.
At least I didn't waste the snow day yesterday. The hubby took the day off to go to the parent-teacher conference, which was canceled due to weather, so I had him drive us to various stores because he grew up in E. Europe where hairpin mountain curves are never plowed*. He likes near death driving experiences in the winter. Also, his adrenal glands work.
I got a lot of Christmas shopping done so that was a positive. Even if I did take a nap on the hubby's shoulder while the toddler played at the mall playground.
*They don't mow the cemeteries either unless someone dies. Communism didn't do a lot of infrastructure maintenance.
Monday, December 13, 2010
2.I am no longer taking Singulair. There never seemed to be a good time to mention that, it never fit the narrative I had going at the time. It's now back to being an 'as needed' medication.
Only took 9 months!
3.Slowly realizing I have more problems with muscle cramps/pain than I have allowed myself to feel. To where I almost denied having them to then endo. Almost.
There are things I just ignore. I have almost daily neck pain. My gut is still painful from the cranberry acid. These are not things I dwell on, except maybe here on the blog. I am used to ignoring muscle spasms/cramps unless they are really bad because I've had them for years.
Luckily the toddler used me as a jungle gym the other day and the pressure of her hands on my legs was enough to make me yelp. I actually didn't realize I was in so much pain, it was kind of latent. Because of the toddler, I fessed up to the endo.
It doesn't help that I always like to blame the muscle stuff on steroid withdrawal. As in, now that I've gone back to 5mg, I feel good, but my muscles are all up in arms and very pissed off about it.
4.I am now taking Liosinopril daily. I don't get it and am confused. When did I switch from having high blood pressure that didn't respond to medication, to not needing medication at all, to suddenly using one medication for high blood pressure that seems to be working?????
Or has my body now decided to do it by the book and ramp up the BP with the prednisone?????
And how will the hydrocortisone affect that? It has more mineralcorticoid activity than prednisone meaning, from what I understand, it will influence blood pressure quite a bit more, but I don't know which way things will swing.
5.Bumping up to 10mg on Friday was fantastic. It worked really well and seems to have help flip the switch so that 5mg now is feeling pretty good. I think I underdosed whatever that episode was prior to Thanksgiving which is why I was dragging for so long. A one time booster dose worked wonders.
So today is day 1 of Hydrocortisone (HC), I hope it goes well. We also have a blizzard warning and I will be so bummed if pre-school closes. Parent-teacher conferences are today and I have been waiting since August to hear what's really been going on at p-school all these months.
I would call off my tutoring tonight, between the storm and the HC, but the last time I tried to call the family, I couldn't get through to anyone.
Saturday, December 11, 2010
I am "unusual" in presentation. American culture likes to celebrate the unique, but this is not the kind of unique you want to be. It's never good to be the weirdo patient. Ever. Doesn't end well for the patient. Ever.
The current diagnostic menu is:
1.Autoimmune adrenal whatchmacallit which hinges on whether or not I really have Hashimoto's. Believe it or not, the Hashimoto's diagnosis has been recalled pending further testing. This after two endos said I had it.
Medicine is weird.
Anyway, more bloodletting will hopefully determine the truth of my thyroid once and for all.
2. Steroid withdrawal. Which makes no sense, and the doctor agrees that it makes no sense, given that I weaned and was OFF steroids. However, this is on the table and I will be made to eat it, I assume, if none of the other testing shows anything.
3.Adrenal insufficiency. I believe the doc is thinking primary, but I think it could be either secondary or primary. From what I've seen in AI patients, the symptoms don't follow the textbooks. There are Secondary AI patients with a mish-mash of Primary AI symptoms that aren't supposed to happen.
A cortisol challenge test will be done sometime this month.
4.Sleep Apnea because why I don't know. Just to rule it out on the off chance snoring makes my hair fall out, kills my appetite, causes bilateral burning back pain, strange drops in blood pressure and discolors my skin. I am not thrilled about doing a sleep study. I have an uncanny ability to stay awake outside of my own bed. I hope they have horse tranquilizers.
I am being switched to hydrocortisone, one dose in the mornings, which has a shorter half life than prednisone. The idea is it will be out of my system so my brain has a chance to pick up the slack, a chance it doesn't have now with the prednisone. The problem is, because it wears off faster than prednisone this means I may be okay for part of the day and then comatose for the rest of it.
So not much hope of returning to exercise or being able to even work. After this batch of students, unless something changes, I'm going on hiatus so I can focus on my health.
My tapers probably were too fast. So whoever said I might need more than 5-7 days for a dose to 'take' was right. We are going to do a super slow taper of the HC (assuming further testing doesn't reveal a more permanent or different diagnosis). I'm told it won't be so bad, but I am skeptical that sunshine is going be blowing out of my ass while I'm tapering off my personal version of crack.
The last time I did the year long taper thing, it sucked hairy monkey balls. However, looking back I kind of wonder if the taper was mismanaged as I had Cushings for most of the taper, which means they were over-replacing steroids. That was a very very difficult year. I am not in my 20s anymore, I am not going to be able to just suck it up now like I did then.
I had really hoped that 2011 would mark an end to the suck of sick, but it looks like I'm on the two year plan, which may turn into the three year or more plan.
The important thing is I now have an actively involved endocrinologist who says if life sucks on 20mg of hydrocortisone that they will fix the dose. That is good news, although the cynic in me is harping on the fact that they say that now.... But at least it was said so there's a shot it will actually happen?
As I explained to the doc, the last time I went through this, I didn't have a kid, I didn't have to be functional. Now I do. I can't just be left to twist in the wind, I have to be able to drive, to function well enough to properly care for my child.
P.S. 10mg today felt good and blunted the stress impact of the doc visit. Unfortunately I didn't sleep much last night as the toddler had a bad night and I had a horrific headache that kicked in sometime after 2am along with cramps in my legs. So I feel good, yet manage to still be wiped. Ain't life a bitch.
Friday, December 10, 2010
Infertiles should all adopt, says the good doctor who has 2 children born of her own womb.
Apparently her special snowflakes don't have a carbon footprint, but us infertiles bemoaning our empty wombs are destroying the planet with our selfishness.
Yeah, me and my ONE kid to her two, are the problem.
I am not going to link to it because it deserves no traffic. The facts are antiquated and the truth is ignored in favor of this doctor's bias (the editor who gave this drivel a stamp of approval without checking the facts should be fired). The whole thing is incredibly offensive to infertiles and adoptive parents.
I refuse to pass the insult on.
But I did want to say, NO ONE on this planet may tell anyone to adopt a child unless they themselves have done so.
The ability to have biological children does not absolve people of any moral or ethical obligation to the orphaned children of the world. You may NOT burden infertiles with the idea it is their duty to adopt and no one else's.
In addition, if you then go so far as to place the blame for environmental destruction solely on infertiles, then everyone will think you are stupid and possibly mentally challenged.
Further, for anyone who happens to have biological children and has never dealt with infertility (i.e. this nutjob psychologist), keep your damn mouth shut. No one going through infertility wants to hear your opinions on IVF or any other reproductive procedure. You don't know jack, I don't care how edumacated you are.
Don't confuse reading the map with walking the walk.
I have a relative who is a Nurse Practitioner who asked me why we didn't "just adopt" when we were still struggling to conceive.
"Why didn't you?" I asked.
She shrugged and looked at her two kids outside playing football. "We didn't have to."
Yeah. Not cool. -500 billion points for her. Fertile people telling infertile people what to do is NOT the key to pleasant family get together.
I used to think I knew what this infertility stuff was about. What was right, what was wrong, what made sense. The hubby and I used to think IVF was crazy town and then we had to walk the walk.
Infertility is not the kind of thing you can judge from the sidelines. The morass of moral, ethical, legal, emotional, and social issues is so complex, I still haven't even unraveled it all and I've been at it for nigh seven years now.
For a PhD psychologist to do so on a national platform just fuels further stupidity and doesn't help anyone. What a waste of space, on many levels.
Thursday, December 9, 2010
But here I am.
There you are.
You know, this Wikileaks article is very interesting. I highly recommend reading it. I have found the whole saga absolutely fascinating and this article looks at the US face of Wikileaks.
A guy who risked his life to help people get anonymous internet access while living under repressive regimes. With Google and US govt funding no less.
A guy who provided internet access to Katrina victims so they could apply for FEMA aid.
Which is honorable and very freedom of speech.
But then he turns around and facilitates the release of documents betraying the privacy of the very populations he has worked so hard to protect. To the point where some people will likely face execution.
Is that anarchy? Sounds like an oxymoron to me. Weird but riveting to read. Much more interesting than me.
As for me, I am going to hurt myself today. Yep, that's right, I'm going to exercise.
After I do some baking and clean the house.
And then I will get up before God tomorrow and go to the doctor. If all that doesn't mess me up, then I'll be doing pretty good.
Send good vibes if you got them.
Also, I wish I had mentioned this earlier, but it's just not possible to give everything screen time, I had noticed when I was at less than 5mg that I had developed a bit of a tan. Very faint. Only the hubby and I noticed, any one who doesn't know me would not have seen it, at least I don't think so. However, since the hubby saw it too, I know it's not in my head.
With the prednisone, I'm once again glow-in-the-dark white (with polka dots!). In addition, I have had discoloration at pressure points since my 20s; around the waist, my elbows etc... The skin around my waist is now white too. The discoloration is gone although the elbows seem to be less improved, just a tad lighter.
That is really weird, no?
Wednesday, December 8, 2010
So exercise is still a problem. Although it's never been a issue while on prednisone so that is new.
Another strike in the prednisone is an 'upper' hypothesis.
Other than that I have nothing much to say.
The other day I was too tired to finish talking to the hubby. It didn't seem worth the effort.
Last night I went to bed stupid early.
Aside from my body's relentless stupidity, things are good. Christmas preparations continue apace. I walked the toy aisles of Target last night and was not moved to buy a single solitary thing for the toddler. Too many things are just not worth the money.
When did toys start to suck? I missed that transition.
Her Christmas outfit is adorbs though. Because the toddler is as tall as a 5/6 year old but with the toddler Buddha Belly (which waxes and wanes depending on her growth curve) she's hard to dress. I also am opposed to sleeveless Christmas dresses. As in they should be outlawed unless you live in Hawaii. So I got her this skirt from Etsy, which is very very very cute.
I have not so wisely invited family to eat with us on Christmas Eve which means more cooking than I want to do. It seemed like a great idea at the time...
I had the menu all planned out. Now there's a vegetarian in the mix so there will be two separate meals to cook. Luckily I am married to the Energizer Bunny. Which is kind of like having your own personal live-in super hero, so that will help.
Monday, December 6, 2010
Busy making cookie distribution flow charts.
Making a list, checking it twice...
No, I am not anal. I am a (former) hazmat supply chain person. Which is anal but it's okay, I guess, because someone pays you a salary to make sure those radioactive oxidizers don't blow up the plane.
If you're earning a salary, it's not anal, it's a job.
Even if it bleeds over into other areas of your life and gives your hubby a facial tic.
(We are kind of ignoring the fact that I'm not currently working in that field here.)
I am also wary of the upcoming endo appointment and the busy along with the terror that someone might take away the prednisone right when I'm feeling human again is just sort of taking my breath away.
That is the movie reel that plays in my mind. A whitecoat, crewcut guy telling me no more prednisone.
Which is kind of not all that serious as far as nightmares go because I have refills on my prescription. And the option of continuing on with the original endo.
So why I would let this movie go and go and fester, I don't know. But knowing how I tick, if that happened, I would try to quit cold turkey and probably hurt myself.
I don't want to hurt myself. I don't want anyone else to hurt me either.
As for the mixer, my family is more appreciative the cookies than I realized. I think it will be okay.
At least something is!
Sunday, December 5, 2010
Tired but good.
I have exercised twice.
Can't manage every day and don't know when I'll do more than 20 minutes of squats/kickboxing/zumba/random flailing.
But at least I'm getting my physical strength back.
The mixer is dying. I think I can finish out this holiday with it, assuming the overheating motor doesn't catch on fire*, however a new mixer is needed going forward.
If you are shopping on Amazon at all this year, would you mind using my affiliate link? It doesn't cost you anything, I don't know who orders what and it will help fund a new mixer, which my bum wrist relies on to do the heavy kitchen work.
No doubt, I am not the worst off in this world, but we can't swing a last minute Kitchen Aid purchase either so...if you are moved to do so, please use the link.
Just click and then browse and shop normally.
*This is not really hyperbole consider the motor is truly overheating AND I once had a treadmill spontaneously ignite while walking. I haven't used treadmills since. This is my karma, people. If I don't show proper respect, it kicks my a$$.
Thursday, December 2, 2010
I do enjoy it.
I try to keep it down to about 4 kinds of cookies.
Not trying to kill myself here.
I actually know someone who did 10 different cookies for dozens of people. Huge cookie trays. Once they had kids, that stopped.
Anyway, the toddler was helping me and accidentally dropped the entire salt shaker into the mixer.
Which promptly killed the mixer.
Because of my wrist, I really rely on the KitchenAid. Otherwise, baking is kind of painful.
My hand mixer, of course, has only one beater. I never did figure what happened to the other one.
Like socks in a dryer, these are the days of our lives.
How is it there are always people missing socks and random beaters but never people who have too many?
Has anyone done that math?
Hubby has found a replacement part and hopefully we can get by with a cheap repair as I already sent my list to
So I spent the better part of the day trying to be gracious about the mixer. It was an accident but that mixer was my 'walker', my hot rod, my mechanical muse, literally my kitchen aid. As in I stopped baking cookies until we bought one. As nice as I tried to be about it, the toddler knows that when mommy is really really quiet that means she's done something really really wrong.
Let's add a little momma guilt to the mix, shall we? Just for fun.
Despite the drama, I felt up for a workout which was pretty amazing since I spent about 4 hours on my feet making dough and forming cookies. So I ran around for 20 minutes doing a few squats and push-ups.
That tired me out pretty good.
Maybe it was a little too much.
I did a little boogie with a hoedown to Grandma Got Run Over by a Reindeer this morning.
This is what doctors call a 'positive dance sign.'
In the interests of full disclosure, I hadn't slept well for a couple days. One night I had insomnia pretty bad and the next I was assaulted by cranberries--I had to stay up until the burning stopped and then sleep sitting up. So maybe that was a factor.
I'm sure the roller coaster blood pressure wasn't without impact either.
I also weighed myself today for the first time since Thanksgiving. I have a strict no scale policy after eating the wrong things or too much of anything. The scale will never have anything good to say. It's a downer and who needs that? Better to focus my energy getting back to eating low carb than dwell the McDonald's meal I inhaled on the drive home.
Well getting back on track didn't go so well as the hubby decided to have a dinner party after Tday. A vegetarian dinner party involving a lot of carbs (and a certain fruit salad that was apparently made of battery acid). I did make my own separate meal but I still imbibed potatoes. And fruit. And dark chocolate mousse.
So I have no idea how I didn't gain weight between the food and fatigue induced lack of exercise.
But I didn't.
That's a nice way to start the day.
Now, off to make cookies and more cookies followed by even more cookies. Time to get everything ready for care packages for out-of-state relatives. I am quite pleased to say I'm up for a full day in the kitchen.
Maybe exercise will be next! I can dream, right?
Wednesday, December 1, 2010
2. BP tanked to 100/70 from a high of 150/100 (highest ever at home and my heart rate was an impossible 57) but I started BP meds anyway. Felt like my head was going to explode yesterday.
The drop in pressure didn't bother me like it has in the past, mostly I felt blessed relief. Still spent lots of my free time on the couch though, applying direct pressure to my brain in an attempt to squash the never-ending headache I seem to have of late. Watched the Rudolph the Red Nosed Reindeer special with the toddler sitting on me.
No back pain this time either.
3. I am irked that my body had a trend going and now this latest turn of the medical merry-go-round is doing something different. I guess consistency is too much to hope for.
4.Why am I still so so sooooo tired? I just feel wiped. I never got to 100% this time around although I was able to do things like grocery shop and feel optimistic. It reminds me of August when I never felt good, but was never bad enough to justify taking prednisone. Except I'm on prednisone so...?
Mostly I am just feeling deflated and like things are never going to improve.
I thought I would be exercising by now. Be back to my usual self. Instead, I feel like a sloth with mono.
Tuesday, November 30, 2010
Ow. Ow. Ow. OWWWWW!
My blood pressure is also being very bizarre.
I am going to try some BP meds to see if that helps bring it down as it is getting scary high.
I have lost weight. Then lost more weight. I was exercising until all the fatigue ate up my life. I cut out salt. Quit caffeine and all I have to show for it? Peak and valley blood pressure.
I did all the right things and I have this zig zagging blood pressure that, right now, is making me very nervous. Usually it spikes and then tanks. Usually it doesn't spike at all if I'm on prednisone so this is very much going against trend.
Monday, November 29, 2010
I don't really care how tired I am because I am just happy, happy joy, joy to have been up for anything other than my previous vegetative state. So...here are the fruits of my labor from the holiday weekend.
First up, roasted cranberries with orange zest and a little Splenda. Great with turkey.
But also good in a winter fruit salad. Lots of fruits are low carb such as any kind of berry or grapefruit and some have a few more carbs, but not too many like apples and pears. Then there are fruits like oranges which you want to avoid or use sparingly. All these fruits made their way into the salad, which was delish...in small portions.
Homemade green bean casserole which has been 'low carbified'. Also added chicken to make it a one-stop meal.
Scrambled eggs and pepper poppers stuffed with cream cheese for breakfast. A great way to avoid over eating on a holiday is to have a hale and hearty breakfast.
Yes you can eat that many calories and that much fat and still lose weight. That is what is great about low carb. Also, if you are recoiling in horror at the fat, I just want to point out there is a whole other world of science out there that thinks fat is not the devil. Low fat is mainstream nutritional advice, but not the only school of thought.
Pumpkin cranberry muffins made with almond flour and ground flax. Low carb and convenient for breakfast on the run during the week.
Lemon crackle top cookies. Full 'o sugar. Taste like summer; bright and cheerful with a crisp sugar crust. I take them to the family get togethers and leave the uneaten ones behind.
Molasses crackle top cookies. Another sugar bomb. These are what you eat if you want Christmas to actually run in your veins. They smell and taste like Happy Holidays.
These were not as photogenic as previous batches, but no one cared. People filched these by the handful and and hoarded them for later. Weird, yes, but people in my family really really really like these cookies. Some so much that all I have to do for their Christmas gift is box up a dozen.
Italian sausage, onion, mushroom and green pepper spaghetti sauce over low carb noodles
You could say I like to cook :)
Sunday, November 28, 2010
Done with the excesses of the holiday.
Back to low carbing.
Done with the excesses of prednisone.
Down to 5mg.
Waiting for 5mg to feel good so I can get back to exercise.
Done with the shortcomings of aberrant adrenals.
For the moment anyway.
Got a call from a mom friend whose little one has asthma and is not getting relief with the current treatment plan.
Clarification, I've been getting phone calls from this mom friend for a while now.
Because it's not been going well for her little one for longer than it should.
So now they are on the merry chase for the right doctor, the right medication, the right tests.
Call me crazy, but I think medical 'Chinese fire drills' are really the biggest problem in health care. Both in terms of costs and quality of care. When a child with asthma has to see more than 4 doctors to get proper care which, in turn, also forces them to use Urgent Care or the ER as the stop gap, it's costing everyone a lot of money.
No one wins.
But that's just normal for our medical system.
Friday, November 26, 2010
The tree should be going up today.
We made another pumpkin pie because the hubby loves it. The toddler helped me make it saying, "Mommy, I'm making Christmas," as she stirred.
Everyone's still in their pajamas, the house smells like cinnamon, the Christmas music is jamming and the sun is shining.
It's gonna be a great day.
But not perfect.
I've had some resurgence of the back pain as I've tapered, but I'm trying not to give it too much attention. I did find some patient accounts of having pain that persisted past treatment so the idea that prednisone must fix everything 100% perfect or else it is not adrenal is not borne out.
I have had back pain with tapering before. Based on past experience, so long as the BP is okay, it should resolve as my body adjusts to the new dose.
However, just because I want to be sure to I'm okay today, I tapered to 6mg instead of 5mg, which I'll do tomorrow. The last thing I want is to be zonked from tapering.
And now I have to go. The family is demanding lunch.
Thursday, November 25, 2010
I am sticking with 7mg today and will go to 5mg on Friday.
The BIG news? I went to the grocery store for the first time in a month on one of the busiest food shopping days of the year and I was FINE. Woot!
The hubby is doing a happy dance too. He hated going to the store, poor guy. He couldn't win. I would thank him and then tell him all the wrong things he did/bought all in the same breath. He is terrible at picking out produce--always always always finds rotting produce and buys it. How, I don't know. It's his gift. I'm sure Oscar the Grouch is jealous.
Also, I am very lucky the hubby thinks bitchy on me is very funny.
I don't get it either, but it certainly helps make our marriage work.
Anyway, today we are driving down to relatives while watching Bob the Builder on the DVD player.
I do not like Bob the Builder by the way.
While the Baaaaahb the Builder theme song becomes my personal earworm from hell, for your entertainment, here is this little vignette of the toddler's ongoing physical therapy...
The other night I was watching some random sitcom and the toddler was in the other room stacking dress-up clothes on top of our very patient black lab, topping it off with a pirate hat and then sitting on the dog.
That dog deserves something better than heaven when she passes. The toddler is no lightweight.
So the sitcom ended and CSI started. I couldn't find the remote to turn it off/ change the channel fast enough.
Of course the toddler wanders in just in time to see the corpse close-up.
The really bloody corpse close-up.
HUGE parenting FAIL anyone?
"What's that mommy?"
"CLOSE YOUR EYES! GO TO YOUR PLAYROOM!" I screeched, frantically digging between the couch cushions for the effing remote.
"What happened to that man, mommy?" she asked, eyes obediently closed and walking into a wall. (Note: Toddlers are very literal. They will do exactly as you ask, except for when they don't want to do anything you ask.)
Locating the remote, I shut off the TV and, thinking fast, said, "He didn't do his physical therapy exercises and he got hurt."
Would you believe, instead of ignoring me or arguing about it, she has done all her PT exercises since?
And I think I explained it well enough, in terms she understood, that she won't be scarred for life from violence on the TeeVee.
WIN for Mommy.
Now, where's the remote again?
Wednesday, November 24, 2010
It makes the most sense.
SAI is supposed to be common too, making it more likely than other things.
So all these forays into other ideas are nothing more than idle due diligence. Some other diagnoses kind of fit, but they don't have the sequence of events behind them that SAI has.
If I hadn't been in the hospital and on so much prednisone and not had SAI before, I would be singing a different tune right now believe you me.
Even if there is some other medical issue, SAI is still a problem given what's been going on. They still need to check my levels and develop a decent taper and monitor the withdrawal. SAI is not going to go away no matter what happens. There still has to be a wean.
Also, the chest x-ray came back clear. Can't even see the tumor. It is an itty bitty thing.
I bet it will either be gone or won't have grown. I hope it was just a byproduct of how sick I was in March if that is even physiologically possible.
I know one person who knows one person who had a similar tumor situation and their itty bitty tumor was gone on the follow-up CT. It doesn't mean anything but I prefer to think about that person rather than the hubby's 80something relative getting 1/2 a lung cut out this year due to a similar, albeit much larger, lung tumor. (They are recovering well, by the way, and still living at home.)
So I'm still in the SAI camp. Do I believe there is a broader underlying issue at work? Yes, but I don't believe science can do anything about it, much like PCOS was unheard of 15 years ago when I started being symptomatic (and I don't think I actually have true PCOS anyway, but that's a whole new post). If I ever find a doc who wants to do the work to really figure everything out, then we'll do it, but until then I will settle for...
1.Being able to parent and be fully present with my child and family.
2.Being able to exercise without having to quit half way through or give it up completely.
3.Cooking and cleaning my house.
4.Driving without hitting anyone or anything.
5.Shopping/Leaving the house whenever I want without worrying about whether or not I'll tank.
6.Returning to full time work when the toddler is a bit older.
7.Returning to a full load of part time work until the time for #6 comes.
1-7 can be achieved with a diagnosis of and treatment for SAI. So can we stop f*cking around and just git 'r done already?
Can I please just have my ability to live a life back? Sooner as opposed to later?
*The current situation is so surreal to me that I find myself questioning if I really ever had SAI and then doh! I remember I had actual blood work documenting it and I even have a copy of the lab results. I am not crazy, the doctors are!
P.S. 7 mg today!
P.P.S. If I seem all over the place, saying one thing and then another and zig zagging, it's because I am. I am all over the place right now with this. I'm not consistent. Sorry. The brain no workee and I'm really stressed.
Not to mention baking up a storm in preparation for Tday tomorrow.
Tuesday, November 23, 2010
I feel good. Awake. Conscious. Not lost in the murky fog of mental malfunction. I don't even want to tell you how bad my driving was before I started increasing the prednisone. More near miss accidents than I have had in my entire driving career compressed into a period of just a few days kind of bad.
The back stuff is weird still though, but now more in the kidneys. Like things are swollen or inflamed still. I wish it would go away. Or get bad enough to communicate properly with doctors via lab results. Either way, but could we please stop camping in limbo?
Contemplating the taper to come as the birth control pills run out tonight and that always seems to make me feel bad adrenally. An adrenal patient told me they read in a textbook that menstrual cycles = low cortisol which would really explain a lot. I told the endo back in August that things as simple as my period were stressing my body out.
I failed to impress the endo with that tidbit.
However, more than once, to the point of being a pattern, stress dosing needs have coincided with my cycle. As have the asthma and viral infections. It all likes to hit at the same time.
Conveniently the toddler seems to have boogies. So the monthly gauntlet should reconvene any minute now. Just when I need to drop the steroid dose.
I also got a chest x-ray today, ordered by the pcp because...you know, I'm not actually sure why. I think the idea was to get a better image of my lungs than when I was so ill as I did have some airway collapse in March that made for a less than stellar view of my innards.
I wonder if they will be able to see the tumor or not? It was originally discovered via contrast CT.
I have been reading about Hypercalcemia, Hyperparathryoidism, Pheochromocytoma, Sarcoidosis and Vitamin D Hypersensitivity.
Anything is possible, but not always likely.
I stopped taking Vitamin D just in case. You never know. Thanks to comments from Tracy that made me go back over all the vitamins with a critical eye.
Although I am not taking near enough D to have problems with it unless something else has gone wrong in my body first, but if there is a base I can cover, I will do so. I thought it was kind of interesting how Vitamin D Hypersensitivity intersected with Sarcoidosis, Hypercalcemia, and Hyperparathyrodism. Didn't think there would be a common factor.
I also stopped calcium supplements for the time being.
17 days until the next doc appointment. I need to work on lowering my expectations dramatically between now and then. For some reason I am hopeful and I know better than to think there will be any answers or help.
Monday, November 22, 2010
I beg to differ.
Yes, I've been hyper, manic even, on high doses of prednisone but I have not ever felt great. Weird. Out of my mind. A little crazy. Cranky. Edgy. Insomnia. Yes I do get that.
But super hero high to where I can power through anything? Nope. What I do get is relief. I get my regular energy back and I go live my life.
So to be told today that I only improved on prednisone because of its false sense of well being is frustrating. Their belief in this idea of prednisone as super charger is so strong I do not feel the pulmo really heard me. They were too busy listening to themselves.
You know that intense mid back pain radiating around the side and through my stomach along with shortness of breath and fatigue and headache that improves with prednisone?
Totally not adrenal. Couldn't possibly be.
I just had regular old back pain and got better because Prednisone will do that for ya. It's a super drug, you know, it just amps you up. That's all. I don't have anything wrong with me at all.
I am also a super model on the side and Taylor Swift writes break-up songs about me.
I would love to know on what planet someone with a documented history of SAI who takes high dose steroids for a month and then has problems upon weaning would be anything other than SAI?
Because that? Is the planet I want to live on.
Yeah, there are some differential diagnoses that could be worked through. I could maybe see sarcoidosis (sp?) on the table (a friend of mine had a brush with it which is how I know anything about it). Or something else. There's the lung tumor after all, but it is small, the odds are it won't have grown or it will have actually disappeared (I'm hoping for disappeared myself).
But you never know. I'm all for a thorough investigation.
The problem is I do not have a doctor who wants to do one. Or if they are doing one, they haven't told me about it.
The endo appointment is 12/10 and the CT scan will be shortly after. I really really hope I get some decent forward movement here. I'm due for a good turn.
As for prednisone, I am on 15mg and feeling better. No pain. Still kind of wiped out though and headache-y. My thought is I may have under-dosed,but, at the same time, I'm glad I didn't take more than 20mg. I don't want to make this mess any worse than it has to be.
The doctors are doing a fine job of f*cking it up all by themselves.
"These symptoms are not adrenal."
"I am not mad at you. You should not be mad at me." (I didn't say a damn thing to trigger this statement at all. I have no idea where it came from or what prompted it.)
I don't even know where to start on today's appt with the pulmo.
1. BP was 150/100. I tried to be cool, but I was very stressed. And angry, don't forget angry.
2.The whole idea that the symptoms aren't adrenal is just odd. Yes, there are differential diagnoses that could be explored but based on my previous SAI history and the current endo's opinion that I have SAI and the fact that no one is really doing anything about ruling other things in or out, there's no opportunity to entertain anything else.
There's no data either way. Until someone takes responsibility to break the stalemate, I'm sh*t outta luck.
I asked what I should do to rule out/in other things.
"Go see the other endo the PCP referred you to."
"What do I do after that? Come back to you?"
"Well..............if you need to." As in not really wanting me to come back.
WTF does that mean? Is there a plan to figure this out or not? If you don't want to buy the adrenal diagnosis, then DO something about it. Or just tell me you think I'm nuts and need Xanax, whatever, but don't leave me hanging. That is not cool.
3. Why do I have to push to get doctors to do what they said they were going to do? Why do they forget what they were going to do in between appointments? Can they not write it down?
This is a consistent problem across the board. Look, we agreed the CT scan for the lung tumor was going to be at the end of the year partly for financial reasons on my part, partly because every single other medical person I know and medical association I know says the follow-up CT scan should be at 6 months not 12.
8 months seems like a happy compromise, work with me doc. Because my family? Is not happy that you're making me wait 8 months and you do not want to go there. I don't want to go there. Order the f*cking test like you said you would and let's all hope the damn thing is gone.
Otherwise? My entire family is going to bring their very loud dysfunction to your office. I won't like that and I know you won't either.
4.Apparently the pulmo did order the cortisol test BUT I never knew about it. I don't know what happened. Maybe I missed something or if they forgot to tell me, but the last conversation I had with the pulmo before getting the current endo involved was "wait 2 weeks and then we'll test the cortisol." There was no way I could wait two weeks.
I suspect they put the order in for the test and told me "wait 2 weeks", but I didn't know I could take the test at any time.
Or I would've.
As I have alluded to time and time again. The lack of good medical care and, apparently, basic communication is going to screw me up. I have not had proper testing. I have an educated opinion with one endo, but no testing. Without testing all I am going to hear from the pulmo and likely other doctors is, "It's not adrenal."
Do you know what they do to people who might have adrenal problems and are on steroids but didn't have proper testing? They wean them cold turkey and, if that doesn't kill them, they run the blood work.
They don't care if you have a small child to care for. They don't care how much pain that causes. They don't care if it hurts or if you have to work. They don't care if you are competent to drive or that it is their dysfunction that made this mess, you get to suffer all the pain of the clean up.
Sunday, November 21, 2010
At 20mg yesterday, I just wanted to go to bed. I still am not sure if I took enough but was/am afraid to take more.
I don't know what I'm doing.
I began to question when is this an emergency? When I have to take 40 50 mg? How much steroid do I take by myself?
Please don't let me end up in the ER. Please not that.
This was bad. I am still not sure if I've completely turned around. Still not sure I should've stopped at 20mg.
But so far, just sitting on my ass after about 8 hours of sleep, the adrenal pain is about 95% gone instead of just 60% yesterday. I don't feel so dog tired, but we'll see what happens this afternoon.
We missed the dinner dance. Went to a movie instead. I spent most of the movie wondering is this a good thing or a bad thing for the adrenals? Am I making it worse?
I didn't feel up to a movie but it was Date Night. Come hell or high water.
The toddler was at the grandparents for the night. That's not gonna happen again any time soon. You know how it is, wasting a babysitter is a sin when you are a parent. Even if you do feel like death warmed over. Under parenting laws, you actually have to die to get out of Date Night.
I am glad I went. The movie was good. It made the hubby happy and he lets me snuggle and sleep on his shoulder during movies. Something I realized I do anytime my adrenals are for sh*t. Deja vu of the last time I had Secondary Adrenal Insufficiency.
So the next big question is when do I wean down from 20mg? Tomorrow is a stressful doc appt that, if I'd been smart, I would've canceled and rescheduled when I had the chance.
The last thing I need is more stress and I don't know what is more stressful than sitting across from the doctor who hurt you when you needed help the most.
So I'm thinking at staying at 20mg through maybe Tues. Weaning down to 15mg on Wed, Thurs. Down to 10mg on Friday and down to 7mg next Sunday and 5 on Monday.
From there I am no longer trying to get off steroids. I tried, it's dangerous either because I'm not tapering correctly (because no doctor will tell me how to do it) or because my adrenal glands are not ever going to recover. But since 5mg can be a little too much for me and 4mg was the best dose (not too much, not too little) this last taper cycle I will try to get back there and camp until I find an endo who wants to do something about what's happening over here.
Saturday, November 20, 2010
This was the first time none of my 'tricks' worked. Salt couldn't keep my blood pressure up. Sugar didn't help. More sleep or more steroids didn't help. The adrenal pain did not abate.
I tried to ignore it but last night it was painfully clear that I needed more steroids.
I took 2mg to start.
Then another 5mg for a total of 12mg that day.
The adrenal pain improved by about 60% with that. Which was a nice break. Finally some relief.
Although I was up in the middle of the night hunting down potassium for muscle cramps and thinking, 'Hmmm I wonder if this means my potassium levels are off.'
The fatigue seems to be better this morning but all I've done is get up and sit. The dinner dance is tonight, I doubt we will make it. Poor hubby will be doing the biweekly grocery store run too unless I dramatically improve soon.
The adrenals are a dull ache and it worries me that I can't banish it. How much prednisone do I need?
Crappy taper for asthma in March.
Suppressed my Hypothalamas-Pituitary-Adrenal-Axis.
Took me about 2 months to wean off steroids. From March through early June
But I did wean and I was off steroids.
Was fine for June and July, some 5 day burst dosing each month for asthma and adrenal symptoms with illness.
I was fine. Doing great. Working out hard. Losing weight.
August marked a long slow slide to hell. Had to stop working out, no energy and from here exercixe eventually became a problem in that it was suddenly too 'stressful' for my 'princess and the pea' body.
Saw endo. Got super stressed about it and had a mini crash after the appt. Did a 5 day burst as a result in early September.
Seemed to be fine until....
I 'crashed' about 5 days after that due to a 30 min elliptical work out and 2 hours of raspberry picking. BP 90/60.
Been on steroids ever since, mostly 5mg or lower. One brief uptick in dose for asthma flare, but right back down to 5mg.
Weaned down to 2mg.
That didn't go well.
Bumped up to 3mg.
That wasn't going great but I was trying to power through.
Encountered some strenuous emotional stress.
Friday, November 19, 2010
Went to tuck the toddler in for the night and found myself panting my way through Fancy Nancy (the latest toddler obsession. Also, great girlie girl books if you have one of those, which I do. They are packed with vocabulary so also educational.)
It was not asthma. Nothing like it. Just weird shortness of breath.
And as I said the last good night, a flare of electric heat spasmed over my kidneys. The mental image it imparted was one of a 4th of July sparkler. Fizzing, spitting heat, whipping across my back.
I really do believe it's possible to literally burn out your adrenal glands. Mine seem to spontaneously combust on a regular schedule. It continues to be one of the oddest sensations my body has ever produced.
Between the breathlessness and intensified adrenal discomfort, I didn't want to wait to see what was next.
So I took 2 mg. Perked up about an hour later and then started flagging again. Decided to ignore it and just take 5mg this morning. Which I did.
Based on past experience, this should be enough to turn it all around. But the adrenal pain is continuing and I'm not sure what to make of that.
I would be frustrated and angry, but I'm too wiped to get all that worked up about it. Here's hoping I'm up for a good rant sooner as opposed to later.
Thursday, November 18, 2010
It was too much after all.
I'm doing the long slooow slide down, very similar to August.
Soon I'll reach a tipping point that will force me to up the dose.
I suspect Monday will be a problem.
With the pulmonologist.
If you've read this blog for a while, you know why this will stress me out.
If not Monday, the dinner dance on Saturday could do it.
I suppose I could just throw in the towel and increase the dose now, but I keep hoping it's in my head. That I'm making it up. That I should sleep more. That it's not so bad. That people with 'real' adrenal problems wouldn't be able to wait and see, so my adrenals aren't really all that bad.That if I ignore it, it will go away.
We'll see how all that denial works out for me.
Wednesday, November 17, 2010
I am not a therapist.
I could never be one.
It's too much.
My student is emotionally troubled. A lot of the kids I see who have academic deficits have emotional ones as well.
Mom is at the end of her rope.
"What should I do?"
I am in the middle.
"I haven't found the answer."
The student, of course, confides to me they have done zero school work all year.
"Please don't tell my mom."
I didn't tell mom, but I made sure to suggest she sit with her kid as they go through all the online schooling stuff so she can see the gaps in the system and in her kid's work ethic.
I warned my student this would all catch up with them.
And last night it did.
Leaving me to try and placate mom while also maintaining what little credibility I have with my student.
Credibility is everything in tutoring. Kids don't listen if they don't like who you are.
I did very delicate emotional negotiations for an hour last night. For a scrapped tutoring session for which I will not be paid.
My job is to teach basic math and reading, but I spend a lot of time doing social coaching and navigating troubled emotions. If I don't deal with the psycho-social stuff, the student will never master long division. That's just how it is.
When I came home, a large amount of chocolate was consumed, my head was throbbing and I had to go lie down. I was spent. Aching for my student who is too young to know that what they do now matters. Terrified my kid is going to hate me too when they are 15. I see waaaaay too many teenagers with serious anger against their parents.
I don't know if it was the adrenals compounding everything or what, but God was that stressful.
Today, the aftermath hangs over me.
Tuesday, November 16, 2010
We'll see if I can pull this one off or not.
And for future reference, when your toddler tells you they are eating your soup, don't get too excited.
They are not eating your soup.
They are feeding it to the dog.
Along with a stick of butter.
So doing the happy dance in the other room because she's eating soup packed with vegetables is kind of irresponsible parenting.
Three year olds are a danger to themselves and others. They know just enough to get the lid off the probiotics supplement container, but not enough to realize eating them all may result in unpleasantly sh*tting their brains out later.
Your husband will not know what to do and when he calls you at work to ask, you will tell him it's probably fine, but call Poison Control just to be sure. And he will ignore you because why no one will ever know, however, your banshee shrieking upon uncovering this oversight will certainly ensure he doesn't do that again. Or so you hope.
Parenting: The only job you'll ever love with all your heart and never be good enough for. The performance reviews are bruuuutal.
Okay. Moving on. Let's answer some questions from yesterday's post.
Ezekiel asked: "If, hypothetically, your cortisol production doesn't wake up again is there an alternative to pred?"
Yes, but I don't know what the doctors would actually end up prescribing. But yes there are other steroid meds, some are considered better than prednisone. More detail on this when I answer the next few questions.
Anonymous wrote: "I think you're trying to taper too fast. I know most docs say to drop every two weeks, but for some of us it appears we are much, much more sensitive to the drops and the side effects of tapering make it soooooo hard to get through the days. I really think you need to stay at each dose longer and also go down by smaller amounts than 1 mg. Also, I've read that if you use your rescue inhaler more than twice a week, your asthma is not well controlled. "
You know, all the pulmonologists and endos I've seen all subscribe to the 5 day taper paradigm. I have heard of longer tapers, which is what inspired me to stick at 3mg for two weeks, but no actual medical professional has ever advised this.
As for the asthma, eh. It's annoying and unpleasant, but not impressive. I've seen worse. I'm not too worried about it. Once I get my adrenal glands going again, I will be willing to add in more asthma meds like Pulmicort, but I really don't want to muddy the waters with more steroids. They say the inhaled steroids don't have the side effects of the oral ones and true, it's not as bad, but I still react to them.
Yes, I am a special snow flake.
You may all applause. Delicately though, I am sensitive.
Edited to clarify: The asthma is the same no matter what I do. The amount of breakthrough symptoms and use of rescue inhaler has been steady so what's the point of more meds? I've done it both ways, there's no difference.
Tracy wrote: "Mayo's endos in Minnesota do adrenals just fine in person - we've seen them for secondary adrenal suppression among other things. In fact, Mayo has one of (if not the) top experts in the world in adrenal tumors.Why aren't they using hydrocortisone instead of prednisone? "
Either I am mis-remembering the info on Mayo or was actually on some other medical system website or didn't see the info you found. Or you got lucky (pass some of that luck over would ya?). The fatigue does kind of eat my memory similar to new parent sleep deprivation.
From what I have read, the steroid used for Secondary Adrenal Suppression varies. It can be either HC or prednisone. Several pieces of medical literature I've read prefer prednisone over HC for SAI but no one ever says why, which is kind of odd since HC is supposedly superior.
Badturns wrote:I'm certainly not pushing the Mayo Clinic because I have no experience there, but I went to their endocrine site and looked at the doctor's profiles http://www.mayoclinic.org/endocrinology-rst/doctors.html There are some with adrenal function/dysfunction listed under "interests" and in their list of publications. E.g., this guy: http://www.mayoclinic.org/bio/10024956.html
Yeah, my memory of what I saw or didn't see where may be flawed or I may have missed something.
However, I will say I'm wary of 'pituitary centers' which is where some of the endos who do adrenals end up. Cushings patients often report cold abuse and lack of care when they seek help from those specialty centers--these are people who actually do have tumors on the pituitary and the pituitary centers are refusing to test! They get their diagnosis from a 'not pituitary center.' It's that f*cked up. Not saying it would happen to me, but, given my record thus far, I am really good at finding doctors who could give a sh*t.
Honestly, I feel awful for endocrine patients. The stories I read online are heartbreaking. People are ignored, belittled and mistreated...by the uber specialists, the doctors who are supposed to be the endgame of medical perfection. It's horrific. Believe it or not, I am nowhere near as bad off as some people. There are people out there who have proven tumors on their pituitary and the doctors still don't care. Isn't that crazy? Shame on those doctors.
Run2WinthePrize posted a comment on the Methacholine Challenge test and I just want to respond here too so she is sure to see my response.
1. MCT negatives have about a 10% error rate from what I remember so with all your symptoms I would definitely go to that other lab for another MCT to rule out operator error or equipment failure. A negative MCT is not 100% accurate and someone has to be that 10%, you know?
2.I hope you find an answer soon especially since you are so symptomatic.
And that's it. Did I miss anything?
Monday, November 15, 2010
I'm going to try and stick it out as long as I can, although I can see how that may not be wise.
But I am determined to get off prednisone.
If I can.
I did exercise last night. It was fine. I would like to do it again tonight.
Today though is the fatigue and the nausea and all the other crap. Not sure if it was the exercise or all the errands I did this morning or both. It can't be withdrawal in the sense that I bumped up the dose, and, by definition, withdrawal is when you cut the dose. So my guess is I'm just not making enough cortisol for whatever reason.
All I know is suddenly I can't eat--the toddler is actually finishing up my soup as I type--and my energy is in the toilet.
Sigh. Will this ever end? Ever?
Sunday, November 14, 2010
On 3mg unfortunately.
Honestly, I'm having a hard time growing a pair to attempt 2mg again. I think I might just camp here at 3mg for a bit.
The asthma is mostly okay. I guess I was sick after all? The neighbor had the same thing, 2 days of sore throat followed by gunky asthmatic lungs. The hubby is now gunky too but without the asthma. So it must have been some kind of mild virus.
Anyway, not a lot of pics from this weekend.
I made protein smoothies for the first time.
They tasted like effluvia from dead fish after they exited a troll's ass. Even with organic strawberries, raspberries, and blueberries.
Apparently, protein powers are very idiosyncratic. What tastes like ass to me, might be delicious to you. Huh. Hope that doesn't mean I have to try every single protein powder on the market to find one I can stomach.
In addition, FYI, yes it is possible to make that puce-mixed-with-purple color without food additives. That weird color is actually all natural. Who knew? If you've ever had a berry smoothie made by natural food nuts, you know what I'm talking about.
As for why I'm even bothering with protein powder, just trying to expand my horizons and low carb options.
I figured out how to make low carb nachos, which was huge. I am going to be doing lots of wicked nacho things in the near future! Pictured are garden vegetable pizza nachos made after that crescent roll cream cheese pizza appetizer everyone used to make back in the 90s. Delish. Recipe here.
Also made Goulash Soup, low cost, low calorie and low carb. Very yummy. I didn't even realize how good it smelled until I left the house and came back. Wow. Good stuff. Original recipe can be found here if you want to try it.
Tonight I will be making lemon caper chicken and hopefully mixing up the first batch of Christmas cookie dough for the freezer.
Last night we went shopping. The toddler has her first pair of jeans. With pink butterflies on the butt. Damn cute.
We managed to buy some Xmas gifts for her under her nose too. Hubby and I make a great team.
It is hard to see the toddler getting so big. She's my first and last making all my firsts as a parent also the last time too. My heart cracked a little when we passed the itsy bitsy holiday dresses for newborns.
Lastly, I am impressed that no one yelled at me for not getting a flu shot. The topic is such a flashpoint, I wondered if I was going to find myself in trouble.
For anyone who wondered, I meant to include the fact that I had the H1N1 shot last year so I am protected there and that is the more serious virus. Ironically, last year, I was not considered asthmatic enough to be given an H1N1 shot from the pulmonologist's limited stash. I had to wait until the drugstores had it available, which was sometime in January. This year? They are all over my ass.
Have a happy Sunday!