Drop It Like It's Hot

Did I just post yesterday? It seems like a week has passed already!

I forgot to say re: the toddler and her grumpy mornings that if I can make her laugh we're golden.

The only problem? I have NO sense of humor in the morning. None. And when I do finally pull something out of my ass, it can have unintended consequences.

Like the time I got her giggling over the idea of our clumsy yellow lab in high heels and a dress. I then caught her chasing the poor dog through the house, trying to put shoes on his feet. I saved the yellow lab only to turn around and find that she'd tied the black lab to some furniture with a jump rope, buried her under a heap of dress-up clothes and topped it off with an open umbrella set over her.

I walked into the kitchen to see my labby love looking at me with wide, anxious eyes, her tail thumping a plaintive plea of 'save me, please save me.'

So I need to be careful about what I say to her in the morning. Don't want to plant the wrong seed. Who knows? She might tie me up next!

As for me, Sunday was a good day overall. Didn't do much though, so it wasn't like I pushed any bars.

Today was kind of blah. I finally had a blood pressure drop while I was driving. It was mild in that I didn't think loss of consciousness was imminent, but I'd really rather not even have a mild drop while driving, you know? It lasted about a minute and I was grateful for every red light.

I thought about pulling over and having the hubby come get me, but by the time I was done dithering over what to do, the whole thing was over. I proceeded to yoga and then dithered about whether I should ask the hubby to bring me some pickle juice. But that seemed lame so I just sucked it up and mentally reviewed the sodium content of everything I'd eaten (as if that would help).

I was a little loopy and light headed at yoga, but was fine on the drive home.

I haven't been checking my blood pressure much of late, so my thought is to keep a better eye on it. The progesterone might change my blood pressure for the better. I am running a little lower than usual right now, for me at least, but nothing of note...108/78.

This Post Makes No Sense, Read at Your Own Risk

I am off steroids as of today. The today and tomorrow in the previous post are a day off. I try to keep the time line straight as I write so things don't get confused but sometimes I mess it up. Sorry. (Although I hope your life is not hinging on my ability to keep the day things happen vs. the day things post straight.)

So...it's the usual woozy and about two blinks from falling asleep where I sit. We will see how I do without steroids. I think I actually weaned a few days early. Unfortunately, my sense of time has been weird since the ER. Half the time I'm lost in a fog.

For instance, the hubby has given up trying to talk to me today. I can register he said something but not follow him. All he gets from me is "What?" He repeats himself and I'm still "What?" So now he's outside communing with the leaf blower until my brain comes back online.

If I need to updose, I will.

I did want to update though before I crawl into bed for what I hope will be a restorative nap...

Saw the pcp. Found out my bp unit is broken, which is reassuring since it was starting to give 140/100 readings. The toddler drop kicked it the other day which likely broke it.

My usual whitecoat hypertension couldn't muster much of a response today. I attribute that to the lack of steroids.

I've lost six pounds since last week. Vomiting with a side of adrenal appetite suppression is actually a pretty effective diet. Too bad it's not more fun.

Appetite continues to be a problem. I work very hard to eat but many times breakfast is two hardboiled eggs and lunch is a piece of cheese that I force myself to eat. By dinner I usually have some appetite, but not enough to make up the missing calories.

It's not nausea, it's this weird anti-hunger. I want nothing to do with food. Nothing. I just can't eat sometimes and then I get stuck in a cycle of low blood sugar making me feel worse. I also fail to meal plan because I just don't care about food, which means we've been living on cheap takeout lately.

I'm thrilled to lose weight, believe me, especially after a year of nothing, but what the loss of appetite signifies is worrisome. It should even out though, with time, right?

And today, I went from the pcp directly to the nearest restaurant and ate heartily aka kind of stuffed my face. So that was good.

My PCP, well I don't want to jinx it, so just think of good things you might say about a doctor and yeah, that.

I gave them this fantastic paper I found on Exogenous Cushing's and subsequent insufficiency. I read it and it was like someone was writing about my life. I kept thinking 'that's me, that's exactly what happens.' I wish this paper had been around in the 90s, it would have saved me so much grief.

The PCP was happy to have the paper. I was quite nervous over how to give it to them without seeming like a know-it-all patient or a medical paper pimp, but they were glad to read it.

My plan from here,which I shared with the PCP, is to just have the endo put in some standing orders for am cortisol draws and we are going to be updosing for illness/surgery in the future. If I keep going downhill, I need something to test the HPA axis which the ACTH challenge does not do.

Oh and I lost one of my jobs from being sick. Which sucks. Although I was struggling with meet all my commitments anyway and likely would've had to let something go. My hope is to focus more on the writing which is actually kind of panning out, I just need to get more books out asap.

Okay I tried to make sense. Sorry if some of the paragraphs don't work. At least there aren't a bunch of typos, right?

Tilted

Well that was interesting.

Not as boring or relaxing as all the nurses promised either.

First, the asthma has been a pistol. I'm not sick, but I have a cough and gunk in enough quantity that the asthma is flaring. So the pulse ox wasn't its usual 100 and I did not want to jack up my blood pressure and heart rate with albuterol right before the tilt table test. I just tried to breathe through all the tight gunk.

So I was wheezing and not feeling my best.

They did get the IV in one stick. Note of interest, it takes a couple weeks for blown veins to be stickable again. I thought they could stick me through the bruises. Not so. In fact, because of all the other sticks from the ACTH Challenge there weren't so many veins left to choose from. At least that's what I was told today.

The nurse got me in one stick though. In an odd location, but it worked. Awesome nurse.

Also, I did the heat pack in the car and I hope that helped.

I think, from here on out, I will be very verbal about how horrible a stick I am since my karma delights so in proving me wrong. Clearly that is the solution to my vein woes. If I am your patient, don't laugh at me on this one. It works.

Actually, I have no health problems whatsoever. Nothing wrong at all. Why I can just stop steroids cold turkey right now.

Ah, if only it were so simple, right?

The tilt table test did actually reproduce the peak and valley nature of my blood pressure. But I did not pass out, not technically. I had a lapse where I lost time, faded and was disoriented, but not a true state of unconsciousness.

The BP went from 141/89 to 128/59. That was brutal. I was short of breath, couldn't think straight and I didn't dare look at the floor. The lines on the EKG monitor went all squiggly too.

After that drop my body went into overdrive, my BP skyrocketed to 150/101 along with my heart rate at 101. I began to sweat and feel jittery. Very odd.

I had another drop too, but the diastolic (bottom number) was still relatively normal so I didn't 'feel' it as much. For me, it's when the diastolic is in the 60s or lower that I start to have problems.

I have no idea what this means or if it is relevant or if the doctors will even read anything into it. The nurse seemed nonplussed and they do this stuff every day so I guess I was normal.

Ha.

They actually told me it's rare for someone to pass out, which is what constitutes a 'positive' tilt table test and that I should not expect anything to happen.

I expected nothing, but it seems what I got was more gray, more in between health stuff no one will find relevant.

As for the test itself, in case anyone is looking for what to expect from a tilt table test.

You don't eat or drink before.

You get an IV, BP cuff and EKG and Pulse Oximeter.

They strap you to a table.

Have you lay at an angle, with the head down for a while ,maybe 10-15 minutes.

Then they move the table to a standing position and you stand for an hour.

All the while they are monitoring your blood pressure and other vitals.

It doesn't sound like much, but it was more strenuous than I anticipated. The blood pooling in my legs was uncomfortable and eventually I went numb.

When they tilted me back to a prone position after an hour, the blood rushing from my feet to my head was nauseating, I though I was going to throw up. And I was short of breath a lot (but the asthma was pretty active though). Then there was the flushing and sweating and pounding heart. So it's much more physical than just lying there like a rag doll.

When it was over, I wanted to take a nap.

So that is your body on a tilt table test. Any questions?

Down and Out

1. The cranberries are still having their way with me and they fight dirty. GERD pain is the worst and it's still hurting three days later.

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.

Cranberry Revenge

It seems that eating copious amounts of cranberries is not such a good idea if you have GERD.

Ow. Ow. Ow. OWWWWW!

That hurt.

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.

To the Moon

Let's talk blood pressure. I do not know what I am going to do. The second I walk into the doctor's office my heart starts pounding. I can feel it accelerating.

ThumpThumpThumpBaDumBump, OMG, OMG, OMG.

I tell myself to relax. To chill. To not let the anxiety get to me.

It doesn't matter.

The second they put the bp cuff on, this perverse little voice in my head starts wailing 'you have high blood pressure, you have high blood pressure' which then becomes a self-fulfilling prophecy.

So stupid. I am psyching myself out. I even do it when checking my bp at home.

Bp at the doc's office was 138/85 which is not bad considering the last time I was there it was 150/100. My heart rate was up too at 90 and I was sweating.

Doctors, even nice ones, stress me out. As I've learned this year, even nice doctors can hurt you. I don't feel safe, I don't feel empowered, I don't feel like I have any control over what happens to me at the doctor's office.

It's an awful feeling.

My first thought is, since I'm so good at driving my bp up, I can probably learn how to bring it down. That is on my to-do list to research and try.

The second thought is how do I stop feeling like a victim? This is part of the reason why I get so freaked out when I go to the doctor. What are they going to do to me now?

How do I empower myself when I'm without any authority? You can't make doctors take you seriously. You can't make them give you medication. If you're too squeaky wheel, you run the risk of getting a psych diagnosis that will haunt you forever (I have avoided this thus far, as far as I know, but it happens to other patients).

The only thing you can do is doctor hop, but that isn't as productive as one might think. Eventually you run out of money and doctors.

I feel like I'm pretty assertive and that I communicate clearly. If you recall, I've had the hubby come to appointments with me and give me feedback on my communication skills.

I went back to school and took premed classes until I figured out what was wrong with me. How extreme do I have to be to make this better?

Whatever I do, it doesn't seem to ever be enough to compensate for the problems in medicine and its practitioners.

It really feels like an abusive relationship. If I called a domestic abuse hotline and gave the medical system the name Dave, I would be told I should leave.

Who protects patients against medical 'abuse'?

No one.

And that is why my blood pressure shoots to the moon whenever I walk into a doctor's office.

Under Pressure

So the relative RN says to me "90 over 60 is normal for me. I am fine."

Yeah. I know.

Some people have naturally low blood pressure. I used to be one of them until this year.

I was 115/70 something for the longest time (Spring through July) and felt fine. Then my blood pressure started creeping up again despite continual weight loss and an exercise regimen that got my resting heart rate down to 60.

I cut salt. Did nothing, although if I eat salt it will increase my BP, but cutting it out didn't appreciably lower it. Yes, salt has a one way effect on me for some reason.

I cut caffeine, had a little slip and then cut it again. Did nothing.

My BP went higher still until I was in 140/90 territory.

So I started Liosinopril (sp?), per a pre-existing agreement with the PCP, which did nothing, just like the last time I was on it. Well, it does make me pee. A lot. Urgently.

I hadn't gotten around to adding the ACE inhibitor (which also does nothing) when the adrenals started crashing again.

While some people may feel great at 90/60, I would challenge them to stay upright as they dropped from 140/90 to 90/60 or even 80/50. Those drops threaten to bring me to my knees when they hit.

I don't know what is going on with my blood pressure. I really think there's something hormonal at play, but so far I can't seem to get anyone with a prescription pad to listen to me.

Repeater

So hey, I guess I should read my own blog before I post. I think I've said the same thing about prednisone and asthma three different ways over the last few weeks.

Sorry about that. My brain doesn't work anymore, not since that time I didn't sleep for a year.

Anyway, I have a sore throat today.

Not sure what that is about. I keep drinking more and more water. Then some diet pop thinking surely soon this painful lump will be washed away, but no. It's still there.

I would really appreciate it if the germs in my life would not do a Superbowl worthy pile on. Okay? Thanks.

The toddler is sick and coughing a tight, wheezy cough. I've been offering her the albuterol inhaler and she's been accepting, which means she must be feeling pretty rotten since we usually have to give her a roofie and then tie her down to get any meds into her (just kidding, about the roofie at least) (Also, it's her inhaler, prescribed by the ped,by the way, not mine). The cough seems to respond well to the inhaler, so another check in the yes-my-child-has-asthma column.

The timing is perfect, as usual. We have big plans this weekend. A road trip to Mammoth Caves in Kentucky. Turns out our houseguest has a thing for caves and he started drooling when I mentioned Mammoth Caves was well, not close, but doable by virtue of the fact that we like road trips around here.

But I have a sore throat and a distinct lack of energy. I am supposed to be in the kitchen cooking almond flax muffins and reduced sugar oatmeal cookies for the trip. Instead I am blogging and fantasizing about taking a nap.

At least I worked out this morning. A wimpy, lame-o half-assed workout, but I showed up and put in the time which has to count for something.

Oh, and here's a tip. Don't take your blood pressure while watching a really scary movie when you are a big fat scaredy cat. It will be sky high.

Cushings Round Two: Saved by the Krebs Cycle

Note 1:You can read about the first time I had Cushing's here.

Note 2: Today is the day I see a new endocrinologist. I am terrified that I will find no help. That no one will listen to me, again. My husband is coming with, to help keep everyone on track and so I don't just give up and walk away, again. Good thoughts would be appreciated.

Note 3: The picture above is from my actual lab result. I am not super tech savvy so that's why it's so funky looking. (Also I wanted to crop out my name.)




The second time I had Cushings was slightly better than the first in that it was diagnosed. I must add, that the diagnosis came after much pushing on my part. I had finally done some reading and knew that something bad had happened to me as a result of the prednisone in the past. I had no desire to repeat history and was emphatic about being tested.

The blood work came back at 1. Normal cortisol levels start at something like 8.

For a year, we tapered prednisone and did 2 hour challenge tests (have no idea what the official medical term was for the test).

I felt like shit, but having gone through it before, I marshaled my resources. I watched what I ate. I exercised despite some pretty significant muscle pain. I didn't lose weight, but I didn't gain either. I might have lost if I'd known about low carb eating (which is actually recommended for Cushings FYI).

And when they gave me the thumbs up to stop the prednisone, everything went to hell.

I had less energy than a corpse. Actually had issues staying conscious at times. Slept 15 hours a day. Went to work, fought to stay awake (passed out once at work), came home and went to bed. If I laid down, I would essentially pass out. So I had to keep moving as much as possible in an effort to keep myself from falling asleep against my will.

This may seem like exaggeration or hyperbole, it is not. This was literally my life.

God, it was awful. Thankfully, at least I wasn't driving--the hubby took me to work as our jobs were in the same area for the same company.

Dutifully, I presented myself to the doctor and they could find nothing wrong.

By this time, I had also enrolled in some basic anatomy and physiology classes. Doctors practice defensive medicine,right? Well I needed to put together my own special brand of defense. I couldn't count on doctors anymore.

While studying the Krebs Cycle in my A&P textbook, I stumbled upon a chart that listed important vitamins/nutrients related to the Krebs Cycle and ATP production.

A light bulb went off in my head.

If prednisone interfered with nutrient absorption?

And I had been on it for a year?

And on it intermittently for years before that?

And I had no energy, ergo maybe there was something going on with ATP production?

And I wasn't a big vitamin taker?

Given all that, what could pantothenic acid do for me? (Link goes to an article on the Krebs Cycle.)

I bought some that night. Took five pills, beyond caring about an overdose and figuring more was better.

80% improvement overnight. No lie. It was more than a miracle.

It took another two years to recover the remaining 20%--something I attribute to still not fully understanding how nutritionally deficient the prednisone had left me. (And also the incredible lack of awareness within the medical community about how prednisone and Exogenous Cushings could affect someone even after the adrenal glands started working again.) So between the first episode of Cushings and the second, Cushings consumed my life from the age of 22 through 30.

What were you doing in your 20s? Probably off having a lot of fun that was not even an option for me. I hate that about my 20s. Then in my 30s, I got hit with PCOS and infertility. I feel gypped.

Anyway, not once had a doctor thought to check my B levels or assess me for any other nutritional deficiencies. Oh, they checked me for diabetes. They checked my adrenals again, but they missed the obvious. Again.

(Doctors don't seem to know much about nutrition and it is hurting patients like me. A book I highly recommend, that I've even seen in some physician offices is Prescription for Nutritional Healing.)

This was also the turning point that marked my enduring interest in nutritional/alternative therapies. I have had really good experiences with vitamins. Now, I don't know if that's because I was chronically deficient from the prednisone or what, but they work for me. I am more likely to try a vitamin, natural remedy or supplement than a prescription drug, often with great results.

In fact, right now, I'm eating celery every day for my blood pressure (which remains low with the occasional higher reading, but I'm still on prednisone too). I read about its impact on blood pressure and, since I currently eat a lot of celery due to prednisone munchies anyway, I thought, why not see what happens?

What the hell? It can't hurt me any more than a doctor would.

Note: I've recently learned about steroid withdrawal which sheds new light on this story.