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.