Friday, July 29, 2011

Gastro Appt

Super wiped right now. Stressful day. Hour and a half at ped doing the annual check up, which was draining for a variety of reasons. Then a mad dash home to get the toddler set up with a sitter and off to the gastro.

The deal is, I have pain but no relevant test results. There should be no pain. It's frustrating. I am on board with the idea that there's nothing wrong, but my body does not care and persists with this RUQ pain.

I will have an endoscopy with ultrasound. The GI Doc worded it very delicately and was super polite, but I gather that I was just too fat for the RUQ ultrasound they did earlier, so we'll do another one.

Ultrasounds must not be very sensitive because I ain't that fat no more. Or maybe my lard is just impenetrable.

I don't have IBS. There are no issues on the exit end, but I was prescribed an IBS anti-spasmodic anyway. I probably won't take it because the issue for me is not the pain, but that there is pain at all. I can mostly live with the pain so long as the GERD is controlled.

But there shouldn't be pain. Or heaviness.

My spidey sense feels strongly that there is something not right, but I have no idea what to do when the endoscopy and ultrasound come back normal. Push for a colonoscopy? Look at the ovarian cyst in there (although how it would make my gallbladder jerk like it was in a mosh pit, I don't know)?

Both the PCP and GI docs mentioned something about a surgical consult, which confuses me. Don't you see a surgeon to cut something out or is there some diagnostic angle that I am unaware of? Will they be able to find what the tests have missed?

What do surgeons do with patients with no diagnosis? Randomly remove organs?

I am in no hurry to have any surgery. I haven't even been off steroids for 2 months. If it's not an emergency, I'd rather just wait. My main concern is to be sure I'm safe, that this pain is not indicative of a serious pathology. It is so specific and chronic, it's hard to accept test results saying everything is fine.

Thursday, July 28, 2011

Shock & Awe

So the toddler's PT and I are pretty chatty. Actually, I wouldn't mind staying in touch with them beyond therapy, but we'll see.

Anyway their kid was in the ER for a decently serious allergic reaction to an OTC that no one is ever supposed to be allergic to. So they ended up on steroids, a five day burst.

The ER doc took the time to explain how the steroids would impact the kid's appetite and weight.

At that point, my jaw hit the floor and I lost consciousness from the shock.

Wow.

Basically I'm pre-diabetic, overweight and having all sorts of medical fun because not one physician ever attempted to educate me on the impact of steroids.

I was never even given the chance to take personal responsibility for my health because medicine didn't do their part. Over and over and over again.

Of course, I did get shaming lectures on my weight from the ped who was prescribing the bulk of the steroids between the ages of 15-18. Medicine totally wins at hating fat people.

Monday, July 25, 2011

All Over the Place Update

I'm still here, just absolutely consumed with my goal of getting 2 novellas and a novel ready for publication before the end of the year. (Actually, yesterday would be ideal.) If you've ever written seriously, you know this is a huge task and it is very time consuming.

The cover came back for one novella and it is stunning. The response has been overwhelmingly positive and it has garnered attention in the best way. So #winning. (Yes that is a Twitter hashtag, I am now a Twit too.)

Right now, the novella is with an editor (the most affordable one I could find, crossing fingers they are as good as their sample seemed to indicate) and I expect to release it late August/early September.

For the next two weeks the toddler is going to Vacation Bible School to learn about Jesus while I write sex scenes. (That makes me giggle.)

I feel okay. Here is the interesting thing...

The weight loss has screeched to a halt and reversed itself a bit. My blood pressure has ratcheted up to 130/90 and I don't feel particularly adrenal. My energy is pretty even which is the only nice thing I have to say about my body right now.

So I would guess that when I was running 100/60, feeling woozy and dropping weight and feeling adrenal, that there really was something funky going on.

The physiology has shifted again and not in my favor.

It irks me to no end that I show up, I put forth the effort, I exercise, I watch what I eat, I take the medications I'm given and nothing changes. Hell, I took how many years of pre med classes for what? Chronic health impotence. Where's the Viagra for that?

When can I write #winning when it comes to my body? When does the application of intelligent effort actually get me somewhere health-wise??????

Thursday, July 21, 2011

ACTH Results

I finally got the ACTH challenge results.

-Baseline: 13.6

-30 minute:26

-1 hour: 28.7

Pretty good. I'm pleased, although will re-read all my info to be sure I'm not missing anything. What a difference from the last one, which started at 13 and never got past 20!

I asked why I was feeling adrenal in and out and if I should be taking steroids in those moments. The endo said there was no way to know if my system was wobbling or not, but that taking 5mg every few weeks wasn't going to hurt me.

I really think the exercise is a problem. I have cut back. I'm alternating days, making sure I give myself a longer recovery time. I take naps if I need them too.

But this is an active time of year. We swim. We walk. We bike. We play tennis and badminton. Active things just happen.

It's hard to just sit on the sidelines, but I'm trying.

My hope is that, with time, the balance will shift. I'll feel less and less adrenal and do more and more.

Tuesday, July 19, 2011

Updates of Varying Importance

Still don't know my test results.

Didn't take more steroids, but I feel the lack. Since I haven't exercised since Sunday, it's not so bad. Fatigue and muscle spasms is all.

However, I plan on exercising today. Just 20-ish minutes of squats with this dvd. (I did find a new Zumba class to try, but not until August.)

I have lost 2 more pounds and seem to be dropping 1/2 lb a day. In total I've lost about 10 lbs in the last 20 or so days, but I think most of that was water weight from the steroids.

I'm only counting weight loss from my last known weight unaffected by steroids. If that makes any sense. So I mark it as 4lbs lost.

The publisher passed on my novella. That's pretty much how it goes: Manuscript always requested, but never published. However, I am excited about self publishing and have been focusing on...

-establishing a twitter presence
-setting up a blog
-getting book covers together
-hiring an editor
-networking with readers and authors

Yesterday I did a lot and today I'm at loose ends. I want to finish the next novella but haven't been able to focus. I think that's the fatigue. I'm just not able to center when I'm tired and writing, even writing badly, is not a passive art.

Sunday, July 17, 2011

Following the Clues

First clue, the pill pack ended last week and the adrenals have never liked major hormonal changes. This time they were copacetic for a few days until deciding that oh, yeah, I really did need to hit the wall at 60mph.

Bam. I was down for the count.

Second clue, headache that would not go away. Couldn't touch it, not even alternating Tylenol and Advil (in large quantities). Sleep only provided marginal relief.

Third clue, eye burning fatigue, but no heavy limbed-ness. Quickly dismissed as Doing Too Much and Being Too Busy.

Fourth clue, when the toddler touched my leg, I just about screamed from the pain. Fatigued muscles that would not recover, even with rest. Sad zombie shuffle was the default gait. Only the adrenals make me hurt/walk like that.

Fifth clue, the small muscles of my feet began to painfully spasm. This is a classic sign of adrenal weirdness for me.

Sixth clue, blood pressure was being weird. Not the huge zig zags I've have before, but I had some 20 point drops that made me symptomatic and went lower than feels good for me.

Final clue, my life was getting smaller, not bigger. Napping for the better part of the afternoon while the toddler watched cartoon after cartoon. Just letting everything slide, except exercise, which I dragged myself through by sheer force of will.

Based on this, I took 5mg to see what would happen. Wow, what a difference. I felt awake and alert. My legs stopped aching. Still struggled a bit with exercise, but it was 95F out, which doesn't help. However, the exercise didn't tank me for the day like it had been.

Now I don't know if I should take more tomorrow or stop or what? I would bet money that the ACTH challenge was normal. So I should not even need steroids. Right? I should be free. Right?

5mg isn't even a physiologic replacement dose for Hydrocortisone. I can't be doing that badly if that's all it takes to turn me around, right?

So why can't I live my life without the steroids?

Is it the exercise? Should I stop? I'm not doing much because of the knee problem. Mostly walking, but it's been very hot. I slowly walked 2 miles today and played 30 minutes of light tennis (i.e. we can't really hit the ball well enough to get a real game going, so spend most of our time picking up the balls). Is this really too much?????????

Friday, July 15, 2011

Holding My Breath

Waiting on test results.

Waiting to lose more than two pounds.

Waiting for my knee to implode.

Waiting to see if this wacky ice therapy thing I'm trying helps me lose weight (so far, no).

Waiting for the weather to improve so the toddler can go swimming.

Waiting, waiting, waiting.

Wednesday, July 13, 2011

Day of Rest

Had the ACTH challenge this morning. It's over. No more frenetic working out. I can take a day off and relax. Except for one day when my knee was really painful, I have exercised every. single. day. leading up to the ACTH test.

Yesterday, I walk a mile, biked 2 miles and swam 1.5 hours with the toddler. It was exhausting and I was completely wilted by low blood sugar/lack of calories, which turned around with a small piece of cake at my sibling's Bon Voyage party. (They are going Down Under to study PT for a few months.)

So today, I'm wearing my comfiest knit pants and a soft t-shirt and oh yes I will go out in public like an under-dressed hobo. I don't care. My legs ache. Both knees hurt. My lower back aches. I'm going to lay low for a day or two before getting back on the hamster wheel.

If the ACTH challenge comes back normal, then based on the wringer I put myself through, I think it's safe to say it's pretty much over. Hello, Normal, here I come.

Tuesday, July 12, 2011

Stabbed in the Back, but Otherwise Fine

So my perfectly healthy gallbladder has taken to stabbing me in the back. For no good reason other than it can.

Sigh.

I really hope an answer or solution (a simple, easy one) can be found because this is just getting ridiculous.

Other than that, I perked up a bit on Sunday and had a pretty full day. 2 hours at the pool where I gave myself a sunburn via incompetent sunscreen administration. I'm pretty sure the dermatologist is going to disown me when they see how tan I've gotten.

Despite my garish sun hat, which I wear everywhere, I need to step up my sun game. I haven't been outside so much on such a regular basis in years. Not even last year, when I had a very active summer. The introduction of the pool into our routine has had more of an impact than anticipated. However, it is very good for the toddler and her motor/sensory issues, which is why we go almost daily.

After the pool, I rode my bike all over the neighborhood for about 20 ass-kicking minutes (wimpy, I know, but I'm starting from like a -10 on the fitness scale). Then I did some jump squats to start easing back into strength cardio work outs.

I also went to the grocery store. So a rather busy day for a former adrenal zombie. A wave of fatigue took me out at the end, nixing another store run, but I kept it together with lots of water and a few pickles.

Monday, I did Zumba. I hated it. It was hard on my knee, which is still recovering from the Amelia Bedelia-esque fall at the pool. I did however get a good workout and, as a result, was quite the space cadet on the way home.

Sunday no nap, I tried, but couldn't sleep. On Monday I konked and that was before Zumba. I've also had some adrenal pain, which makes NO sense, but it is what it is.

Hopefully all this 'stress' is prompting my body to get a clue and make more cortisol.

Really good news...I have lost about 2 pounds so far. Which is the first weight loss I've seen in about 7 months. So major progress even though the number is teeny tiny. Let's see if I can get to 10lbs lost before vacation in August.

Monday, July 11, 2011

Teaching the Toddler About Food

We don't have true junk food in the house all that often, but a recent house guest has a weakness that I tried to head off by putting a basket packed with single serving bags of various chips in their room. Otherwise, they would fill our cupboards with large bags of Doritos and Tostitos etc... and we all end up eating a bunch of crap no one needs to eat.

The hubby, of course, found the junk food stash (like a Red Dye No. 5 bloodhound, that man) and got into the Cheetos. He offered one to the toddler.

She took the neon orange stick and looked at it, suspicious. She had never seen anything like it before. "What is this? A carrot? Yuck!"

"No, it's not a carrot," we told her.

"YUCK! I don't like carrots."

"It's not a carrot. Try it, you might like it."

She tentatively put it in her mouth, ready to spit it out at the first hint of carrot-ness. As it turned out, junk food is not an acquired taste, it's pretty much addictive from the first bite. She loved it and now knows what a Cheeto is.

By the time our houseguest arrived, all the Cheetos were gone and we'd had several conversations about how junk food is fun food, but not good for you.

Based on that incident, when she spotted someone at the pool with the same snack packs, she pointed and very loudly shouted, "Look over there, mommy. They have junk food! It's junk food! That's baaaaaaad, mommy."

Ah yes, my girl, the budding food police.

Then yesterday, we had the following conversation at the pool.

"Mommy, I'm hungry."

"We fed you. You are fine." (I say this a lot as 'I'm hungry' also means 'I'm bored' or 'I'm tired' or 'You aren't paying enough attention to me' or 'I want something but I can't tell what so I'll just ask for food'.)

"No, I'm huuuungrrrry," she wailed.

"Well Daddy ate all the extra kielbasa he supposedly made for just this moment." I gave Daddy the hairy eyeball and he smiled innocently. "How about we have some ice cream when we get home?"

She looked at me, horrified. "Mommy, there's too much sugar in ice cream. We can't eat that!"

I laughed. "It's low carb ice cream, babe. We can have it."

"No, we can't. It's not healthy."

"Well, FYI, that cookie you're eating is no better. It's not healthy either."

"But," she went into a tirade that I couldn't interpret ending with a crescendo of, "Too much sugar!"

Properly schooled, I capitulated. "So what would you like instead?"

"Ice cream!"

Saturday, July 9, 2011

Current Adrenal Status

It's hard for me to remember what normal is these days. I've been saying 'I'm fine' to myself all week, but then I realized...

-I'm napping every day.
-I'm not working.
-I'm not cooking or cleaning or doing much of anything.
-I'm tired all the time with intermittent limb heaviness.
-My blood pressure still trends low despite adjustments in BP meds.
-I forget to eat or have no appetite when I do eat.

But there's not much muscle pain and I am exercising.

At the expense of everything else and not that I feel up to it, but I can force it, which is a good sign. Full on adrenal meltdown removes all ability to power through.

Things are a far cry from normal still. You'd think my inner optimist would shut up already.

The goal now is to continue to work out and increase intensity markedly as the ACTH challenge nears. I want this to show up on the test. If everything comes back normal, then fine, I'm just recovering still, but, if there's any chance this is adrenal tankage, it needs to be documented.

After the test, I can back off and slow it down a bit.

Friday, July 8, 2011

For Jenni

Jenni left the following comment:

"Hi. I stumbled on your blog posts while Googling for info on HPA axis suppression due to long-term steroids...

I've been on prednisone for for about 18 years now, for severe RA. At some points I was taking 20mg a day, but the past few years I've hovered at 10 - 12mg per day. Prednisone has absolutely ruined my life: DEXA scans equivalent to an 80 yr old woman, three major joint replacements, fused wrists, cracked and broken teeth, not to mention the emotional aspects of having the face of a 500 lb circus freak.

I'm 30 now, and I have not had much luck with physicians as an adult -- a series of rheumatolgists either wanted me to taper at an insanely slow rate, or they informed me how bad prednisone is for my body and ordered me to immediately drop to 5mg, not giving a shit that at that dose I basically couldn't walk or dress myself. I gave up on docs (except pain management) and have been freewheeling for a few years.

At this point, nearly all my pain and mobility issues are caused by the damage done to my muscoskeletal system by pred; there's very little active inflammation -- so I decided that I need to get OFF this stuff once and for all. I don't want to die at 50, inhabiting the body of a debilitated 90 yr old.

I tapered by 1mg a week. On July 1st, for the first time since I was 12, I stopped taking it entirely.

I was Googling because I'm worried about going into adrenal crisis without knowing it. Tapering has been easier than I'd feared, but I already had almost all the symptoms before I began tapering. My knees are so bad I can't walk much anymore - I know I need replacement surgery or I'll be in a wheelchair by Halloween. I spend most of my time in bed or on the couch, and sleep a lot. I've never been a big eater and as my pain level and depression\frustration increase I eat even less. (I also have some serious dental issues due to the pred eroding half my teeth, which makes eating painful to begin with).

So, conclusion? I'm already experiencing extreme joint pain in knees and elbows, I sleep 14 - 16 hours a day and lay around the rest of the time, I barely eat enough to sustain a bird. That was all true before I began tapering the pred. How the hell would I know if I were in adrenal crisis? I'm adamant about never ingesting the foul stuff ever again UNLESS it's a life or death emergency. I just don't know how to tell if it is.

After 18 years of HPA axis suppression, I don't know how my body could be able to just start pumping out its own cortisol again. Isn't there a point where the atrophy is too much to recover from?

I took 1mg of prednisone last night because I couldn't sleep and was feeling light-headed and nauseated -- not unusual, as I'm on narcotic painkillers, nausea is something I live with. Feeling dizzy is also a familiar state of being, particularly when all I'd eaten in the past 24 hours was one slice of Kraft cheese and a couple Pixie sticks.

I'm just afraid I won't recognize adrenal crisis until it's too late because the symptoms are all so commonplace for me. I've been fighting the horror of prednisone for so many years there's a part of me that can't believe I could actually be free of it.

I'm not asking for medical advice. I have a rheum appointment on the 4th. Maybe I'm wondering if you could fill me in about HPA axis suppression and recovery, and adrenal crisis. Pred has a half-life of about 24 hours, I know. I was taking 2mg for about a week, then 1mg for a few days, then I stopped taking it entirely for five full days. If my body isn't producing enough cortisol, wouldn't I be dead by now? Is there any way to measure cortisol level at home? Based on your experience, what would you do in my place?

I hope I haven't imposed myself -- I've never met anyone who's fought prednisone the way I have, and I think a lot of frustration just sort of came pouring out, lol."

Okay. There were a lot of questions in there, here goes.

1. Your situation is different from mine in material ways, so much so that I don't know how much help I can be. Have you tried networking in the RA community? You can also talk to adrenal patients, but their situation is different enough that it will be difficult for them to know what to tell you. They can however, point you toward studies and information as well as share their experiences.

The two adrenal boards I suggest are here and here.

2.Slow tapers are safe tapers. Fast tapers can be dangerous, which is why I keep ending up in trouble. So I would not take that as a black mark against the rheums you've seen, they're trying to keep you from ending up like me.

3.The rheums that cut you to 5mg with no taper? RUN screaming. The 1mg a week taper you did may have been okay, or you may find that it was too fast. The thing is, I wonder if your ability to 'feel' symptoms is stymied by a) a high tolerance due to chronic illness or b) masked by medications (you say you're still going for pain mgmt). I know my sense of normal is all messed up, so I worry you might be in the hole and not realize it until it's too late.

4. " If my body isn't producing enough cortisol, wouldn't I be dead by now?" Not necessarily. I had an am cortisol of 1 and still drove a car and went to work. I wasn't terribly productive at work and I sometimes drove with my eyes closed, but I kept going through the motions of life. I slept 15 hours a day and never felt great, but I functioned. Of course, I was also in my 20s, which, youth helps.

Now at almost 40, I think an am cortisol of 1 would have me on the floor waiting for someone to find me and call 911. The am cortisol of 6 I had this episode, I felt it. A lot. So it varies, but you may not necessarily be down for the count.

5. " Based on your experience, what would you do in my place?" I would get an am cortisol draw, even if I had to go to an independent lab and pay out-of-pocket to do so. Better safe than sorry. A crisis hits very fast. Because your baseline is already so like a crisis, you may have trouble catching it early. Getting actual blood work so you have an objective measure is critical.

After the blood draw (which should be done asap), I would start some alternate day dosing. Maybe 5mg every other day, but you should experiment with the dose. For the HPA axis to come back (and it may not, you are right to be concerned), you should pursue a switch to Hydrocortisone, which has a shorter half life.

Make sure your family knows what to do and what to tell medical personnel if they find your unconscious (i.e. adrenal insufficiency/long term steroid use, needs 100g of prednisone in an emergency). You should get a Medic ID bracelet if you don't have one.

I would get a rheum I could live with and try to foster a long term relationship. Same goes for PCP, a good PCP would probably be invaluable as your body starts to manifest all the various complications involved with RA and its treatment. But maybe RA patients would have better advice on that front.

Also an endocrinologist to run the testing to determine whether your HPA axis is recovering or not.

You should not be doing this alone. I know how frustrating is to go to the doctor and go to the doctor, especially when they aren't connecting with you and your needs, but you really do need a doctor in your corner.

Unfortunately, you're at the point where not seeking medical care is just as bad as crappy doctors, if not worse. Find the right doctor for you. It may mean an appointment a week or whatever, but if you can find the right fit, it will be worth the effort. Other RA patients may be able to pass on recommendations to cut the search short.

Good luck. I hope that helps.

Thursday, July 7, 2011

Work Out Report


So I'm back to trying to kill myself with exercise. It's genetic. One of the parental units does insane things like run 10 miles with pneumonia (while calling me to tell me about it). I'm not that crazy, as evidenced by a distinct lack of exercise induced injuries compared to my parent who is a hot mess of injury, but I can push myself into a pool and muck up my knee pretty good.

(I did not jump, I sat on the edge and entered that way, somehow slamming my knee to the bottom of the pool. Now I walk funny and can't go to Zumba class.)

This (sufficiently anonymous) picture is from when we were doing the Strength Cardio work outs (aka Lactic Acid training, aka Metabolic Conditioning). I wonder where I would be today if a)I could've kept up with those work outs and b) been able to lose weight?

Here's a front view. I almost want to say how much I weigh as I think I look pretty good given the ginormous number on the scale, but I can't bring myself to be that honest. Let's just leave it at, I'm dense and weigh more than anyone expects.

By the way, a good quarter of my ass was muscle growth from those work outs. NOT what I was going for as I have enough junk in the trunk, thank you, but, if anyone has a flat butt, this work out method will fix that right quick.

My hope is to start working my way up to those workouts again. Now that the steroids are done, I seem to be able to lose weight, although I did get side tracked by birthday cake for a while there. It would also be nice to feel strong and competent in my own skin as I've spent quite a lot of time not feeling like that.

My next goal is to drop 20lbs. If my health cooperates, I should be able to do that this summer.

The only thing missing? Push up motivation. I just don't want to do them. No interest whatsoever. Don't know what that's about. If you see the push-up fairy, send her my way.

PS. As of today, I'm not longer radioactive. Sadly, the police never stopped me to inquire as to why I was tripping their geiger counters, so I never got to whip out the little card I got from the HIDA scan explaining I was not a nuclear device.

Wednesday, July 6, 2011

HIDA Scan Results

Ejection Fraction: 62%

The fact it took 2 hours for the contrast to enter my bowel? A non specific finding that occurs in approximately 20% of patients and merits further investigation with a Right Upper Quadrant ultrasound to rule out a bowel obstruction.

H. Pylori Test: Negative.

Liver Blood Work: Normal (which I am SO relieved to hear as the fatty liver thing worries me).


Number of phone calls it took to learn this? 6 back and forth over 3 business days.

Amount of time on hold with the doctor's office for the last call? Long enough to complete a work out.

So why does it hurt so much? I can live with pain, up to a point. The past month or so started to cross the line for me, especially with the GERD flaming high. It's hard to believe that level of pain is completely benign.

I also would be shocked if there's a bowel obstruction, everything seems to be moving along just fine in there.

Next steps will be the ultrasound, which will show nothing. Then the GI appointment and, if necessary, the PCP has offered a surgical consult to see about having the gallbladder yanked anyway.

On the one hand, I am relieved that there is no need to rush to surgery, especially with the HPA axis being so mercurial. On the other, I'm frustrated by this body that hurts for no good reason. Even less fun, I believe the test results put me in a category where even if I have the gallbladder removed it may not alleviate the pain.

Sigh.

At least now when I'm up at night due to the pain, I can do so with confidence that there is nothing wrong.

Tuesday, July 5, 2011

Playing Dr. Google or How People Find this Blog

  • "prednisolone withdrawl and hot back and kidney"

You're f*cked. Welcome to my world. Go to the doctor now, but keep your expectations low, they won't know what to do with you.

  • "how to avoid corticosteroid crash"

Don't take steroids. Too late? Read here.

Cliff Notes version: Don't stop taking steroids. Increase dose as necessary. Drink lots of water, eat salt and some sugar. Find a doctor who remembers reading the adrenal section of their medical textbook.

  • "adrenal insufficiency will it fix itself if it is from prednisone treatment"

No it won't fix itself.
Drink lots of water, eat salt and some sugar. Find a doctor who remembers reading the adrenal section of their medical textbook.

  • "steroid withdrawal pain" and it's cousin "steroid withdrawal and muscle pain"

Hurts like a mofo. But you know that already. Hang on, it will pass. No, the doctors don't care so don't even bother calling them. Take over-the-counter stuff, if you can, to cut the pain--that'll take it down from a 6/7 to a 4. Also, stop exercising until the pain is gone.

  • "adrenal insufficiency & pain all over the body from steriods"

Yep. It happens. See above. Been there, still doing it, myself. No, doctors have no idea how painful it is.

  • "steroid withdrawal when will it end"

It usually takes roughly a week for steroid withdrawal to pass, give or take. You should feel progressively better as time passes, if not then you should be evaluated for potential HPA axis suppression.

  • "can't find gallbladder in HIDA scan"

Not an expert, but, from what I've read, this generally results in your gallbladder being given an eviction notice. Call your doctor and get the official results.

  • "can 2 months on prednisone cause addrenal suppression?"

YES. Please see a doctor to be evaluated asap.

  • "steroid withdrawal doctor"

Good luck with that. If you find one, send me their name.

  • "Roller Coaster and Tilt Table Test"

Doctors only order that one for the bad patients. What did you do?

Monday, July 4, 2011

Fire on the Fourth

Let's take a moment to review our multiple brushes with fire.

Last July we discovered a serious electrical problem that could've burned the whole house down. Instead the breaker tripped repeatedly, protecting us, but also ruining a fridge full of food. It took us a month of frustration before we figured out where the exposed wire was.

This Spring, I managed to set a hand towel on fire and saw, first hand, the gaps in how smoke detectors work vs. how smoke really travels. Even with smoke detectors it would be really easy to die in a fire. In fact, smoke detectors only cut the death rate in half. You still have a 50/50 shot of dying in a fire. Did you know that?

In June, this year, my husband entered the Darwin Awards competition by placing Tupperware in the oven and not telling me. I pre-heated it to 400F, completely unaware of the hazard until I went to put the chicken in the oven. Thankfully, I was right there and ready to use the oven, not off doing something, i.e. dawdling not really worrying about when I was going to use the oven (which would have resulted in melted, smoking plastic).

Then our basement started to smell like something was on fire. We never found a source, but the smell was strong enough I was touching the walls looking for hot spots. We unplugged some lamps and electronics and I go down and sniff on a regular schedule, still trying to uncover the source of the problem.

Last night, a smoke detector went off. We thought the beep-beep was a weather advisory, but nothing ever came on screen. The beeping intensified and we realized it wasn't from the television. So we turned everything off and listened. A full 10 minutes after the beeping started, we finally clued into the fact it was a smoke detector going off. Except we couldn't tell which one was beeping.

Hubby went to check the basement, while I stood, poised at the foot of the stairs, ready to dash up and grab the toddler. Even then, I couldn't immediately tell it was the smoke detector upstairs that was going off.

Once I realized it was, 'heart in my throat' does not even begin to describe the terror I felt as I ran to her room. All that time wasted as we remained clueless and then the inability to tell which alarm was going off, both factors meant certain disaster in a fire.

Thankfully, there was no fire. Just another valuable lesson in fire safety.

Please check your smoke detectors. Be sure you can hear them if they go off-- especially in the summer when everyone has fans and a/c generating lots of background noise.

The belief that we can slap a few of those suckers up on a wall and we're protected is false. The truth is, if there were a fire in our basement, by the time smoke reached upper story detectors, the odds would not be good for us, even if we use a fire ladder to climb out* . This is the reality of fire safety as it is practiced by the general public.

And you better believe I am about to get all kinds of anal about it at our house. Too many close calls.

*First we'd have to wake up the toddler, which is nigh impossible, the alarm last night didn't even come close to waking her. Then we'd have to get her down a ladder, which, with her motor issues, not a recipe for success.

Saturday, July 2, 2011

5mg

Haven't heard back yet on the HIDA scan. Doc didn't call me on Friday. I may have missed a call from them Sat morning per the 'Restricted' flashing under missed calls on my cell phone, and no call backs, so I'm SOL until next week, after the holiday.

The 5 mg helped. Slowly. I suspect it was so slow because a)I maybe needed more than 5mg and b)I should've gone to bed for the day (yes, it was that bad) and instead I kept going.

Sitting outside in 90F heat is not really going to help you when your adrenal system has gone haywire. I supervised the toddler at the pool for 2 hours, laying on the concrete during each 15 minute swim break, scrabbling for every little bit of rest I could find.

Then we went swimming again later that day. Basically, I just plowed forward (well, not so much plowed as lurched unevenly). Went to bed early. Slept in a wee bit today. Got up and felt like I was trying to move through Jello, but decided to forgo any more steroids.

Sat morning was rough, but I caught the low blood sugar early, fed it a Godiva truffle (at the mall), and spent the day shopping with my parental unit. It was mildly embarrassing to insist that we stop to eat at 2pm as all I'd had was a flax/almond muffin and that truffle and the blood sugar was NOT happy about it.

Everyone else that has a body that works, they just go without worry of interference. I have to cater to the stupid things my physiology does and it can be awkward because no one understands. I had to get kind of forceful about "I need to eat. I'm going to be sick if I don't eat" and people looked at me weird when I said it. I wanted to melt into the floor.

The good news? I was hungry today. Really hungry. The Jello fog lifted by noon and I felt pretty okay. Like it was a good decision to not take steroids again.

Friday, July 1, 2011

With a Little Help from My Pills

Took 5mg steroids today because...

-exhausted
-weak
-no appetite for the last several days (ate only one meal yesterday and am forcing myself to eat)
-loopy
-BP trending low but not bottoming out per se, just feels like it is
-irritable
-muscle cramps
-HIDA scan was way stressful

Other possible solutions to explore include...

-Tinkering with BP med dose or discontinuing altogether
-Putting more carbs in low carb
-Staying far, far away from medical procedures of any kind
-Never seeing doctors again because they order said medical procedures
-Stop complaining about anything because that means I see doctors who order said medical procedures

Still can't say yet if the 5mg helped but I'm waiting for it to kick in aaaaany second now.

I also hit my head harder than anyone should this morning, which is known as NOT HELPING. We have a small house and the concession we made to have a dining room, (teeny) family room and (tiny) play room on the first floor was that we shoved our bed in the dormer nook upstairs, which has a vicious widow's peak.

Yes, we sleep in a hallway that occasionally attacks our skulls.

Note to self: Never jump out of bed.

The HIDA scan results are in. Just waiting for the doc to review them and call me back. Still time to place your bets. Yay or nay on gallbladder removal? Since I seem to specialize in symptoms that don't test well, I say nay. Also, I have learned that GERD meds totally jack up the gallbladder.

Now, if you'll excuse me, I'm going to self medicate with chocolate and then take something for my aching head.