Thursday, May 31, 2012

10mg Dance Party

Tried 5mg on Wed and it wasn't enough. It hit me better than it did on Monday, but I was still somewhat sleepy with lots of limb heaviness. Took a while for the second 5mg to hit my system, but, once it did, all was right with my physiology.

Almost. Still a teeny bit of limb weakness, but nothing that could stop me.

I lived the dream.

I vacuumed!

I dusted!

I argued with the steam cleaner and gave up!

I sat and just gloried in the feeling of well-being as opposed to that of death warmed over. OMG. I felt fabulous. Like I had woken from the dead.

Then I put on some music and did the bare minimum of squats and push-ups, something I've managed to do, by some miracle, every 2 to 3 days while sick. I am pleased because this was one of my goals--not to give up on fitness even when I'm sick. It wasn't easy, but I did it and I suspect the only reason I managed it at all was because of the IV nutrition therapy.

Of course Wed was easy due to 10mg. With steroids, my life is possible. I hate that it's true, but it is. I don't know how to get past this, how to help my body move forward. It seems impossible.

I also saw my shin bones on Wed for the first time in...months? The shin bone sighting (the Yeti of my body!) made realize I kind of have edema at some level all the time now. I have mentioned it before to my pulmo because they ask, but they don't seem to see it, which means, of course, that I'm a lying liar who lies, right? So it's been dismissed. However it's progressing and I need to advocate more strongly.

As far as I know, my heart is okay. I had an EKG at the ER and it wasn't exciting for anyone. Well, except for me as I'm rather fascinated by the texture of the adhesive on the patches. I also peel rubber glue off magazine offers. Now you've met your TMI quota for the day. You're welcome.

Wed was also the toddler's award ceremony and party for Tae Kwon Do. Thanks to steroids, I was able to make a cake. Gluten free, high protein, packed with fiber and very low sugar. It's delicious despite being so healthy. Slowly, but surely my baking talents are transferring over to a whole new approach to food. ('Course I can't eat it, what,with chocolate triggering massive heartburn and all. Sigh.)

Click this pic to enlarge and then tell me you don't want a piece. I dare you. The kids were scraping the crumbs off the plate and I got requests for the recipe. High fiber, high protein low sugar cake y'all, it's really that good.

Wednesday, May 30, 2012

10 mg

I felt horrid all weekend. Ended up with that 5mg dose on Sunday and tried to do without the next day. Monday was okay-ish so long as I sat on my ass, which I mostly did. When I perked up a bit at night, I decided to go for a walk.

Ha.

That's rich. Me? Exercise? Only if the sad zombie shuffle counts as aerobic activity. Made it four blocks on weak legs and called it quits.

Tuesday, was worse than Monday. Ostensibly due to my zombie workout. Had a hard time staying awake, my eyes kept closing. My legs were very weak, like a weight was pressing me down, demanding I kneel. I couldn't handle the stairs without stopping to wait for my legs to recover and had to sit a lot. Gait was slow and stumbling. The last time it was this bad was right after the adrenal crisis last year, so it really got my attention.

Breathing was fine. No shortness of breathe. No chest pain or pressure. Any asthma was mild, still reacting to the tomato pepper 'poisoning.'

Since I had an IV appointment with Dr. Alternative, I held off on steroids. Yes, I drove with eyes that would not stay open. I'm going to try not to do that again.

Dr. Alternative was not in the clinic so I threw caution to the wind and took 5mg with the goal of improving my driving. That opened my eyes, but my legs were still very weak. So I did another 5mg and that did the trick.

My theory is I probably underdosed the stress dosing while I was actively ill and I'm in the hole. I need to stress dose for a while to climb back out. I'll be starting with 5mg and see how that goes. The goal is to get me functioning at a level higher than the sentient vegetable I've been of late.

Although we'll see what Dr. Alternative thinks--maybe they have a trick or two up their sleeve.

Oh, how was the Meyer's Cocktail? Yesterday's IV infusion was the first where I've been healthy enough not to have an acute asthma response. It still kind of wiped me out despite the steroids though, which I don't think it's supposed to do. I don't know.

I got a hug from another patient though. I must be scoring high on the pity index. That has not really ever been my life's goal.

Tuesday, May 29, 2012

Still with the Allergies

The asthma has remained activated since salsa Sunday. My nasal passages are inflamed and swollen, similar to how I couldn't breathe through my nose after an allergic reaction to Cipro a few years ago.

Energy is in the toilet (when is it not?) with lots of weakness. I was not seriously considering sleeping on any flat surface yesterday like I had been on Sunday, but I was only a hair above that. I really probably should've stress dosed, but I didn't.

Take that, adrenals.

Here are some pics. I'm still working on a food project and I have cute dogs.

This is our beloved black lab. 12 years young and wise beyond her age. Best dog I've ever known. It was 90F+ on Monday so we got the pool out for the dogs.

Here's our yellow lab. Yeah, he looks cute, but his beauty regimen consists of eating poo.


This was breakfast a few days ago. Sauteed kale and onions topped with scrambled eggs and seasoned with tumeric and paprika. It was good.


Vegetarian taco salad: salsa, guacamole, beans, peppers, lettuce, cheese. I took this before I realized I can't eat tomatoes or peppers anymore.


Wild blueberry sorbet. Delicious. I was going to add low carb ice cream, but it didn't need it. Incredibly decadent for a one ingredient dish.

Monday, May 28, 2012

Allergic Asthma?

Yesterday was full of surprises.

My energy was low and it took me a while to figure it out.

I forgot to take my nightly dose of licorice. And my body really cared about that. It missed it like some people miss Bill Clinton's presidency.

By the time I was a slumped lump with the toddler in the church nursery, literally unable to keep my eyes open and trying to figure out where on the floor I could lay down without anyone seeing me, I realized I probably should stress dose.

There was a lot of breakfast and my morning vitamins in my stomach so it seemed like it took forever for 5mg to hit me, but ever so gradually, I could keep my eyes open.

Yes, that was the big battle of my day. Not sprawling across frayed church carpet and staying conscious. I still konked out later, in my bed, at home, without any public drooling, which I count as a win.

It's interesting to note that my am cortisol a few weeks ago was 15. Not too shabby. Quite good in fact. I continue to believe it's an issue of responding to stress--that I don't have the full spectrum of functionality. Which is almost impossible to measure with blood work. I would need an ITT or OMM to even come close to understanding the failures in my HPA axis.

Anyway, from there, I had some salsa. Tomatoes are an iffy food for me these days, sometimes okay, sometimes not. This time not. Or rather, I think the big chunks of pepper were the problem.

The interesting thing, it caused an asthma flare. I began hacking, my throat began to itch (an itch I've known to be asthma in the past) and I got a little flash of heart burn (although, thankfully, no eruption of Mt. Acid).

Okay, so now I want to say I don't think I've had food allergies all along. I think this is a new development. That I had GERD, which is currently controlled with the enzymes, but now allergies are coming up. I've had some sensitivity to peppers off and on since my 20s, but food triggering asthma is completely new, never experienced before.

The reason I back track is I was remembering when GERD started for me and I ate no trigger foods for weeks and weeks and it didn't improve. So the GERD is not as simple as never eating another tomato or pepper.

I think I have new food allergies, which is not great news. It would've been better the way I originally took it, that they'd been there all along. The last thing I need is an even more hyper-sensitive system!

Now what do I do about it? Avoid the offending foods and what? Am I really never going to eat chocolate again? Or tomato bisque? Or cucumber salad? Ever?

I did test some organic cocoa powder in a smoothie. It did not cause heartburn, but I did have some nausea. I want to try it one more time with a smaller dose.

My mind is just boggled by this. I don't want any allergies!

Sunday, May 27, 2012

The Slow Come Back

I'm tired. I think it's the Melatonin I've been trying at night to sleep. I suspect 5mg is way too much and now I want to sleep all the time.

But then I have the 'pushing through jello' weakness in my limbs.

My lungs have been raw and I even had some wheezing, which has been rare this flare up.

I'm very cranky. Don't even look at me or I'll hurt you. Seriously. It's a low cortisol irritability but I don't plan to stress dose for severe bitchiness.

It's hard to tell what's up when there's just so much feedback. My body talks too much.

We did not make it to the graduation. My breathing got bad and I just decided to take it easy. We are pretty good at never missing big family events so hopefully people won't give me too much grief about it.

We are going to church today and down to a swim date, which I will probably sleep through. Or possibly stay home from, not sure yet.

I'm wearing new pants. I ordered them online in one of my oxygen deprived shopping sprees. Remember the ones that were too tight before so I didn't buy them? These are those. With the weight loss from being sick (which is slowly coming back, I think) they not only fit but are loose.

Loose is kind of bad because it means I need to find a new store. There are no more plus sizes for me.

Aside from the social impact of weight, fat is easier for me. Easier to dress. Better health. My most serious asthma flares the last six years were preceded by rapid weight loss. Nor does my cholesterol ever improve with weight loss. Or my blood pressure--that actually got worse.

But I do want to look nice in my kamikaze body. At least I can achieve that.

Saturday, May 26, 2012

My Email Address and Newly Discovered Allergies

For the reader who asked, my email is pissedoffpatient AT gmail DOT com.

Energy was okay yesterday. No steroids. Tried to take it easy, but probably overdid it judging by how pooped I was at the end of the day. We went to the park and I had a mom friend over. Chatting with her, I didn't get lunch until almost 2, with only 1/2 cup of yogurt for breakfast and it being the first day without steroids this week (which means even lower blood sugar than normal). I finally had to come clean that if I didn't eat,I would probably pass out. I offered her a salad, but she ran away when she saw how many greens were involved.

Later the hubby drove me around for some errands. Gah. I HATE THIS FATIGUE! I also dislike the heat edema that came to the party and failed to take a picture--just put my legs up and tried to stay cool which helped.

I have continued to work with the digestive enzymes with good success. Any failures are due to, I think, food allergies/sensitivities. So far on the list: chocolate (sob), peppers, cabbage, cucumbers and tomatoes (yet they are sometimes okay). Some of these I've had issues with even on Nexium, but I attributed it to GERD. 'Oh, the GERD is just bad today.'

With digestive enzymes to treat the GERD, I'm fine so long as I don't eat any offending items--this is the distinction that makes me consider it a food sensitivity or allergy.

Well.

Knock me over with a feather.

I had no idea that I had any food sensitivities, but it is becoming very clear that I am reacting to several foods the second they hit my stomach. When that happens, I have to resort to Nexium and even then it takes hours and hours for it to kick in and give me any relief.

Huh. My body can still surprise me.

This news article about a nurse who denied medical care to a student in the throes of acute asthma brought back memories. None of them good. I had one asthma attack in High School. The gym teacher ignored me. The kids laughed at me. The school nurse rolled her eyes.

I marched into the doctor's office the next day and demanded to be excused. Even at 15, I was incensed and the doctor handed a letter over no problem (I note that because it's somewhat unusual for any physician to listen to me, let alone give me what I ask for, I must've been quite persuasive).

For years, I worried they would come take my High School diploma away because I didn't have any gym classes. But I'm glad I did it. I could've easily been that student, gasping for air as a nurse locked me in the room, not even bothering to call 911 let alone dispense any medicine.

Ironically, I had an ER experience that was a lot like that once.

Today we are going out of town for a graduation party. I'm packing a picnic because I don't want to eat any crap food that might make me sick. The few restaurant meals I've had recently have not gone well. Processed restaurant food has actually been burning my mouth.

Wish me luck that I have good energy today. I need it!

Friday, May 25, 2012

And Just Like That, It's Cocktail Time

I woke up yesterday, after writhing with nausea until 2am, and was fine.

No need for albuterol or nebulizer.

So farking weird. I want to accuse myself of making it all up, but I was there! You would never know I had intractable asthma the entire day before--nothing I did worked. And to go from the narrow edge of an adrenal crisis to not,in what seemed like the blink of an eye, was just...bizarre. Did my body run a Hail Mary pass at the last minute or what?

Fatigue was okay, with some adrenal burning in my back. If I hadn't needed to drive, I would not have taken any steroids yesterday. Since I had places to go, I did 5mg to play it safe.

Got my vitamin IV and boy, did it stir the pot.

This was my first official Meyer's Cocktail. I don't know what the others are called. Anti-oxidant infusions? But they weren't Meyers from what I know.

Here's the list of what was in my Meyer's Cocktail:

-Vitamin C
-Magnesium Sulfate (with more added later.)
-Calcium Chloride
-Pyridoxine
-Dexpanthenol
-Vitamin B-12 (ah, no wonder I feel so frisky despite being tired from lack of sleep!)
-Vitamin B complex
-L-glutathione
-Glycchrric Acid (that looks misspelled to me, but it's what they wrote down.)

For a second time in three weeks (OMG I've been sick forever), the IV infusion went in and 'broke' the congestion in my lungs loose. I became acute very rapidly and my BP plunged. Hence the additional magnesium, which helped quite a bit.

At the start, the IV hit me like a Mack Truck and took me down. By the end, I was better. Again, better than the ER. Better than the nebulizer. Even if it was the initial trigger, although all that gunk would've caused problems sooner or later anyways.

So I'm tired and wiped and just blah.

Going backwards a bit...the ER visit last week. I filled out the survey for the ER. Not sure if I'll mail it in though. My only criticism is they really didn't pay close attention to my O2 levels and I really needed the doctor to ask me how I felt since it would've triggered me to say 'not better.' (I was too out of it to communicate well, something else that was missed. I think I was just perceived as quiet and no trouble vs. sick.)

In the end, it all worked out, I guess. They were so slammed and I looked better than I was, so I know it wasn't intentional. On the other hand, I feel like maybe it would help to say 'Hey, you discharged a patient whose O2 dropped to 90 after rolling over and sitting up. She left just as bad as when she came in.'

I don't know. I'm conflicted about it. It's also amazing how uneven ER response is to asthma.

Thursday, May 24, 2012

Damn

I had to take 10mg yesterday.

Asthma flared pretty significantly over night and into the morning. My entire rib cage was sore from being so tight. Sticking with albuterol via inhaler though. It's just easier. Ended up two-timing the inhaler with the nebulizer and still...yucko.

The fatigue was killer. And my body started acting out with that adrenal complex of sore throat and general malaise with weakness.

I gave it a few hours and added some caffeine, but things just were not improving so I caved and did 5mg. Then another 5mg.

Work was bad. I started with diarrhea which I hope was just Augmentin messing with me, but, regardless, the adrenal piece came alive with generalized stomach and back pain, increasing weakness and fatigue replete with clumsiness resulting in a cut finger and a bruise along my spine. I also lost time, zoning out and coming to with no memory of things that were said to me or that happened.

I am not sure what I should do today regarding everything.

Hopefully it's just that I did too much the other day and will settle down now that I've had a good night's sleep stayed up most the night with abdominal pain and adrenal inflammation in my back. I have another IV today and I'm looking forward to its assistance with the mess that is my body.

It's not that I get sick, you know. Bugs happen. It's that I can't seem to get better. If I feel better and act accordingly, I get sick again. Over and over again this pattern manifests, usually with adrenal strain, but now with asthma and adrenals together. It needs to stop.

On the upside (my life is not one long downer no matter how much it reads like it) I have a 'date' with a new friend and the families liked my photos. I like taking photos and it looks like I have an eye for it, if not the actual $5,000 camera needed to do it well.

I did 'silly face' photos with all the kids and it was gratifying to hear everyone laughing and enjoying the pictures at the 'graduation' party. To think I had a hand in that creating that moment just blew my mind. One family wants me to come take photos which will be fun.

As for the comment on the previous post regarding if I ate paleo. I do. Pretty much. Here are photos of lunch and dinner from Tuesday (I'm working on a food project). Breakfast was a 'green' smoothie, which I drank, but didn't care for so much.



Wednesday, May 23, 2012

Rush

I woke up yesterday, very clear in my lungs. No tightness. Didn't need any albuterol and, as a result, I decided to stop the steroids. Still congested in my nose though with a productive cough, but I think I'm winning the war. Finally, 20 days later.

Since I felt so much better, I did the 'Rush' Zumba workout which is 20 minutes. I didn't go full force, kept it light but worked up a sweat.

Being sick reinforces my decision to do the DVDs over signing up for a class. It's vital that I go at my own pace, in my own time. Strict schedule adherence is impossible for me still and sometimes I modify things in a way that would make me very awkwardly stand out in a group class.

It feels so so SO good to use my body again. I hate being sidelined (doesn't everyone?). I think a lot of my ability to even do this much so soon stems from the IV nutrition therapy. I'm a total convert, about to become a zealot.

By the way, I did find one study on IV therapy for asthma. They hyped magnesium but there's also mention of nutrients like B12."Patients who received longer-term therapy (average duration of 12.58 months) for chronic asthma demonstrated an overall average improvement of 95%." That's pretty interesting. If there's a way I can better manage this stuff with less disruption of my life, I'm all for it.

As for the rest of the day post-Zumba... I overdid it a little bit. Ran three errands and my lungs got a bit raw and reactive. That tired me out and I was happy to go to bed.

Tuesday, May 22, 2012

Better Than Expected

I only made it to one store yesterday and then I had to rest a bit. However, my legs were strong and I didn't feel overly strained by the trip to Costco. I was happy to sit down after, though.

Then I did a very very very low key, low impact Zumba work out. It seems the asthma accumulates overnight and I spend most of the day trying to recover,and by evening I start to improve, just in time to start the cycle all over again.

I don't know if anyone reading this recalls that I tend to buy things when I don't feel well? I call it retail therapy for asthma.

I feel so godawful, that buying things is a welcome distraction and source of pleasure--it brings me outside the prison of my body. Hence the Zumba dvd.

This latest episode, I have also bought:

1.Clothes for the toddler.

2.Shoes for the toddler.

3.A zumba DVD set (which was planned, I just hadn't gotten around to it).

4.Books.

5.Vitamins for the toddler. Fancy ones.

Do I have the money for all this? No, not really, but it made me feel better and I just can't see beating myself up about it right now. Of course, I really need to get better before I talk myself into a new car or some other financial stupidity.

You know, I could totally see myself doing that. Buying a new car. Just because I can't breathe.

How strange.

I think the hubby needs to take the credit cards away when I'm sick in the future.

Monday, May 21, 2012

Tired Monday

I must be getting better if my body can finally muster the energy for PMS. I'm about a week late, I assume due to the stress of illness.

Breathing is still not super great. Lots of pressure and tightness--often can't 'pinch an inch' on my chest. I continue to need to go slow--that includes not talking so much because that makes me pant. But I'm trying to stick with just the albuterol inhaler and not do the nebulizer. So far so good.

In the name of stupidity necessity, I plan to hit 4 stores later today to get some errands dealt with while the hubby is home to drive me around and pick me up if I fall down.

Hallelujah the hubby is home. OMG. So glad to have another sane adult (we have a surplus of crazy living with us) home to help out.

I haven't weighed myself, finding that to be counterproductive during PMS, but my stomach is quite flat and I would estimate about a 10lb weight loss. I have no appetite. Even being on steorids. None. I even forgot to feed the toddler a few times--I just don't care about food. So it's back to forcing myself to eat at regular intervals. Fortunately, my appetite likes salad this time.

Sunday, May 20, 2012

Sunday Pictures

Warning: Images of completely unphotogenic feet ahead. Prepare yourself.

First, the irises from what passes for a garden in our front yard. We've been putting the stalks that fall over into a vase. So gorgeous! I feel like doing a Van Gogh painting of them or something.


The toddler had her first Tae Kwon Do exam yesterday. SHE BROKE A BOARD! For the first time OMG! I am so proud of her.

Here she is warming up.




And here are my feet. They are much more slender in person. I'm trying to document the edema, but the camera adds so much fat that it's hard to capture photographic evidence. I probably need to change the angle so the image isn't so distorted, because, truly, my feet look totally different in real life.


And no, I still can't breathe. Going to bed now that I've posted this. Grandparents have the toddler today.

Friday, May 18, 2012

Please Just Stop Already

I still can't breathe.

But there's nothing I can do about it.

I hate the fact that I'm on my own as a parent right now. I've called in family and sitters to help so I can rest. But I wish we had cancelled the hubby's trip. I thought I would be fiiiine though. Instead I'm no better than I was yesterday and I'm using the nebulizer and taking steroids--I'm not playing around.

Took the toddler to the park twice today. I can't push her on the swing, can't walk around the duck pond and it's hard for her to understand WTF is wrong with mommy.

It's frustrating.

Being Mommy never stops.

Being sick never stops.

It's impossible for me and unfair to her.

Thursday, May 17, 2012

I Need More Rest

Ended up back in Urgent Care, this time one with an x-ray as I was advised. They turfed me to the ER, which was hosting an 'I-cut-my-head-open' playdate with the three and under set. I entertained myself trying to peg the drug seekers.

My main complaint was extreme weakness with shortness of breath. I caught my eyes closing as I was driving to the ER, which is not normal. I did not think it was asthma, but a nebulizer treatment (in the waiting room) really helped.

O2 was 100% but dropped into the mid and low 90s whenever I moved which led me to the insight that I need more rest.

I keep thinking I'm getting better and so I push push push. I dance with the toddler. I take her to school. I go to the grocery store and suddenly feel like I'm going to pass out because my oxygen has tanked.

The problem is the toddler won't let me rest and the hubby is not great about letting me rest. It's not that he doesn't help, he does but it's hard because he's in school and I'm the center of the home--he has no idea what to do. This is something we really need to work on as it's a fine line for me to stay out of the hospital any more.

I'm also having more asthma than I realize. I don't know why I'm so disconnected from my asthma symptoms. Is it just that I'm so used to not being able to breathe? Was it that I didn't wheeze much or have much congestion? That it was more chest pain and pressure making it off-pattern for me? I don't know, but I really was not in touch with how bad I was breathing.

The resolution from here is to take more steroids for a while. I'm a single parent for the weekend (of course!) and I need to be on top of my game and manage things more proactively. I've also added 'weakness' to my list of asthma symptoms that warrant a nebulizer treatment. I need to start smoking first, dithering second.

Of course this is all going to suck monkeybutt for the adrenals. I am so screwed there.

The Latest Flavor

The antibiotic is working. The drug-induced diarrhea is brewing. And I firmly believe I stayed out of the ER and hospital because of all the alternative woo-woo stuff.

Even if it does all taste like sun-dried bull testicles with a delicate and flavorful cat vomit crust.

The clinic had some 'bars' for sale that included greens powder.

"Have you tried these?" I asked, wondering if it was indeed possible to make greens powder palatable.

"Oh yeah, they're great."

"Which one would you recommend?"

"The lemon is really lemony, but good. I like this other one best."

So I selected the bar the staff said they liked.

Ha!

It tasted like ass.

I didn't even chew it, just spit it back out.

To date, there is no known way to make this stuff not taste like ass.

The search continues.

(I really question whether the people who make this stuff even like food or if they've ever had any good food, like ever?)

Of course, my daughter, the sugar fiend, spotted the bar when I got home and begged daddy to "split it with me please, please, please." My husband had some inkling that the bar was not going to be great, but gave it to her anyway.

Predictably, she hated it.

It was rather comical watching her expression change as she realized she had not scored a free cookie, but rather something that tasted like ass. She spit it out right quick.

I was also given some licorice syrup on Tuesday. They set the ginormous bottle on the counter and my eyes went wide as I murmured "And how bad is this going to taste?"

For the record, better than greens powder, but still not great. No wonder they make candy with it, you need a ton of sugar to make it go down.

For those who don't know, licorice has some impact on adrenal function (and causes circulatory issues which I suspect I'll be vulnerable to, but we'll deal with that when it happens). I am interested to see how well it works for me.

Wednesday, May 16, 2012

The Thermometer Has Been Fired

I'm pretty sure this post is full of clunkers. Enough to make a writing junkyard. Sorry. You'll understand when you read it.

So I don't feel better. Yesterday was not great. I tried not to stress does and ended up driving so erratically, I hit a curb on a straight road. Had a hard time responding to changes in lanes. Just really out of it with fatigue.

And oh, lookey at who else showed up? Asthma. Big time. Felt like an elephant sitting on my chest. It's possible I wasn't fully oxygenated on top of everything else.

I took 10mg while the toddler was at OT and my breathing eased almost immediately. The energy bit lagged, but at least I didn't feel like I was armed and dangerous behind the wheel.

At preschool drop-off, my daughter's teacher greeted me with "You don't look great. Are you okay?" And she was not the only one who asked me if I was okay, apparently, I had the death-warmed-over look down (which I thought was strange because I dressed up in pretty fancy clothes--people would ooo and aah over my skirt and then tell me I looked awful. It was weird.)

From there, it dawned on me that this is/was a lot like walking pneumonia. Ah, a clue! I got one!

I began making phone calls trying to get into a doctor. Set up an appointment for today and then realized I could not wait that long, my breathing had deteriorated to the point of no return--the asthma had become acute.

(Pauses to glare at magazine containing 'you will die of antibiotics' article that convinced me to hold off seeing my doctor.)

But I had another alternative medicine appointment, an anti-oxidant infusion.

And I so did not want to go to the ER. Please, not that.

By sheer force of will, I hauled my gasping lungs out to the far East side of my town for the alternative medicine infusion. I was breathing so badly, I didn't have enough air to talk even if I wanted to, which was unfortunate as I managed to alarm everyone at the clinic. I could only take panting, shallow breaths. Faking normal was not possible. Bad ju-ju. Very bad.

Basically, what I'm saying is, I really should not have been out in public yesterday in any capacity other than seeking immediate medical care to ensure I continued to breathe. Duh. Live and learn.

I began to think I'd made a terrible mistake and toyed with leaving to go straight to the ER. Especially since it took them almost an hour to get a vein.

But I stayed. Mostly because the idea of more people trying to find a vein was just too much.

And, to my surprise, the infusion helped. Immensely. It saved me from an ER trip. It wasn't a cure, for that I needed antibiotics, but it was a huge huge OMG huge help and game changer yesterday. For the better. It was way better than a nebulizer treatment too.

So, take that, mainstream medicine.

However, one of the things I don't like about my alternative care is there's not much proactive disclosure. If I don't ask what's in the IV bag, I won't be told. That bothers me. I don't think that's a 'best practice'.

However, of course, I asked and it was Alpha Lipoic Acid and something-something-choline. I never made it to the L-glutathiamine (I think that's spelled right) because I 'over-oxidized' or, in other words, my system was full up on anti-oxidants and didn't need any more. You know when this happens because you turn red somewhere on your body. I got a hive-y rash on my arm near the infusion site. Other people get red faces, ears or necks.

I also had a B12 shot.

For the record, I have taken oral Alpha Lipoic Acid for years without coming even close to the positive effects of receiving it by IV. It even helps my blood sugar--if I eat bad, I don't get woozy sugar highs.

From the infusion, I went straight to urgent care, because I knew this bug wasn't dead without antibiotics and once the anti-oxidants wore off it would be ER time.

Turns out my thermometer at home isn't working properly because I did have a fever. And maybe walking pneumonia. For now my label is bronchitis, but I have to go back if I don't get better, to one of their sites that has an x-ray machine.

Just to make it more miserable, the antibiotic is Augmentin, which has been known to chain me to the toilet in the past. The doc said I might avoid that with a probiotic and some yogurt. I hope they're right. I'm due for a little less misery. I've been fighting this bug for 15 days now (I realized the day I had immense sinus and ear pain was the warning shot, so this started a little earlier than I began complaining about it).

Tuesday, May 15, 2012

Survivor

Yesterday I had about two hours where I felt like I was going to kick this bug and then I started feeling like poo-poo again. I went to an event where everyone introduced themselves one-by-one, but I have absolutely no memory of people saying their names. None. So farking loopy from being sick.

But it's two more hours than I've had since this thing took over my body 12 days ago. So we'll see.

Took 5mg. Wished it had been 10mg, but I'm trying not to get carried away. Steroids won't kill this bug and it's serious enough that steroids can't compensate for it fully either. I could take 100mg and it wouldn't do anything, I don't think.

Tried the green powder in a strong black tea with coconut oil. That seems to be doable. The yogurt wasn't working anymore for me. I don't know that I'll ever get up to the 2 tbsps. 'prescribed' for me, but I am trying.

And also still wiping green slime from the walls. Apparently I evicted it with some force.

Mother's Day was okay around these parts. Did you know that the day after Mother's Day is the day women sign up on affair sites en masse? It is the busiest day of the year for those companies. I did not have that compulsion this year (or any other year, for the record), but this cold just makes everything hard. I almost cancelled everything to go to Urgent Care instead.

Our big tradition is that we avoid restaurants (crazy crowded, not my thing) and just stay home, planting flowers and eating take out/grilling.

But somehow we got sucked into a restaurant meal. Mine was awful as all the broccoli tasted like greens powder.

Thankfully, we had time to go buy flowers and plant them afterwards (which is to say the hubby did all the work), which made my day. Once they are in full bloom, I'll take a picture. We have a gorgeous wall of irises in the back (blooming two months early thanks to climate change) and then annuals in front of them.

Monday, May 14, 2012

Green Vomitus

One of the 'things' I'm supposed to be doing is using green powder. What is green powder? Basically every vegetable no sane child would ever eat, dried and ground into a fine silt.

It tastes like ass. One infected with C. Diff.

Most raw foodies mix it in with their veggie/fruit juice, using the sweetness of the fruit to mask the taste. Other folks dump this stuff into smoothies.

Since I am trying to limit sugar consumption, I mixed it in with my tea.

Which is a pretty terrible way to consume the stuff.

(How is the health benefit of this stuff affected by the level of sugar required to make it palatable? Inquiring minds wonder.)

So, lucky me, I started throwing it right back up the other day. My body had had enough ass thank-you-very-much. I tried to catch it in my hands and ended up sliming my face up to the eyebrow and leaving a spray pattern across the kitchen wall.

When I say it tastes like ass, I really mean it. I don't know that I've ever had such a strong reaction to a 'food'.

In fact, I would rather lick my dog's ass than ingest this stuff.

Instead I mixed it into yogurt and that was moderately better.

Of course, I still haven't stopped gagging when I eat actual vegetables now. This swamp mold is ruining real food even.

On the sick front, I wanted to go to the doctor today and get antibiotics, but now I feel guilty. What if I don't need them and instead contribute to the rise of flesh eating bacteria everywhere? I read a magazine article Sunday on how we're killing ourselves with antibiotics, and it was sufficiently scary enough that now I think I'll wait a few more days.

Maybe my miracle will come, right?

As for steroids, tried 5mg and nothing. I only got 4 hours of sleep, though, which did not help. 10mg got me moving finally, but it wasn't great. I hope this bug leaves me alone soon.

I'll do 5mg today and try to step down.

Sunday, May 13, 2012

Sunday Pictures

The toddler had her dance recital.


She did great despite being very nervous.


Here's a picture of the orange-mint water. (Like you care, I know, but I'm really excited about it still.)



And a picture of Kombucha. It's an interesting drink. Like a fruit beer. (I don't like beer, which is why I don't drink, but this was okay. It made me think I could eventually graduate to beer someday.)




As for how I feel? Eh. You know the answer. Like poop. 5mg wasn't enough. I need more. Not sure if I'll be brave enough to take 10mg today or not, but I probably need it.

I've lost about 5lbs from not eating either due to lack of appetite/heart burn. It's not new weight loss, just a swing down on the waffle range. New weight loss will be next.

For extra fun, on Saturday some passing cigarette smoke exposure triggered an acute asthmatic reaction.

Then I got to the point where, if I sat too long, I started to fall asleep. I'm just really tired and I can't seem to wake up.

Saturday, May 12, 2012

Failure

Yesterday, my stomach realized it had been remiss in its duties to provide the free world with acid. Acid for everyone! That's my stomach's motto.

By the time I took Nexium, it didn't even work.

So I'll ask and see what the alternative medicine people say. Not too hopeful that there's anything they can do. The alternative paradigm is that heartburn is because you have too little acid or lack enzymes, but my problem has always been that I overproduce.

Then, I could not get up. Just could not wake up on Friday. I was really down for the count. I had to call for help with the toddler because I just couldn't do it.

I did not stress dose, figuring maybe if I stayed in bed all day that things might improve. I rested all day, felt semi-human by the evening.

Of course, today, same problem. I'm so fatigued, I'm fighting to stay awake. And I just don't have time for this. May is probably, literally, the busiest month of my life (and the hubby's life, it's really insane). We have three different events going today alone and I have to be able to cope. So I took 5mg.

This chest cold turned head cold is not helping. I'm at that tipping point where I'll either get better or need antibiotics. Either way, it's pure sinus pain misery.

Friday, May 11, 2012

Going the Wrong Direction

My chest is mostly clear from this cold BUT now it's moved UP to my sinuses????? I thought bugs followed the laws of gravity? Sinuses first, chest second. Or have I caught a new one?

I think the CDC should hire me. I am clearly an expert bug catcher.

Today is much much worse. Mostly, I think, because I couldn't breathe last night, I was so clogged up. I probably had cold apnea.

I am so annoyed by this bug. I've been sick since last week!

Shoo! Go away.

Also, please cross your fingers that the toddler lets me rest. I am not going to be able to rise above so much today. I'm down for the count now. Send Mary Poppins STAT.

Thursday, May 10, 2012

Alternative Medicine Update

So while the raw vegan vitamins and supplements still taste like ass, they do seem to work.

I am using a digestive enzyme supplement in place of Nexium. Get this, it actually works. I am shocked. I was very skeptical. I do have some breakthrough heartburn, but, as soon as I take the next dose...relief. They need to add this stuff to Pepto Bismal, that might actually make the pink slime effective for once.

I have never been able to miss a dose of heartburn medication without vomiting acid and acid diarrhea since I was 23 years old. So this is pretty significant.

I don't know that I'll never, ever take Nexium again. I have a sneaking suspicion that, if you drink crap like Coke Zero and eat a bunch of junk food, you can outpace natural medicine (or any medical treatment, for that matter). Also my GERD is genetic, it's not lifestyle and I'm sure it will cause me problems again down the road.

So, if I need Nexium, that's okay with me. If I have to use it intermittently, that's fine. Or if this enzyme effect is limited and I go back on it full time, that's also fine. My goal is to feel better, however I get there, not to necessarily never use mainstream medicine again.

The only thing is digestive enzymes are more cost effective than Nexium (insurance doesn't want to cover it), with fewer side effects, so it would be a win-win all around if they are effective long term.

My blood pressure medicine has also been switched to a medicinal herb formulation. I looked them up. They're legit. These herbs gave rise to prescription medications, only the herbs don't seem to have the side effects of their 'processed' pharmaceutical counterparts. I am checking my blood pressure frequently and it's fine, so far.

Controlling BP with herbs, however, is not cost effective. If I need continual medication, I'd rather go back to the pharmaceutical stuff. My only complaint with BP was that I've lost all this weight, yet need ever increasing amounts of medication. I find that really annoying.

One of the (many) other supplements I am taking is Maca root. Google told me it's the 'Peruvian Via gra' which, Good Lord, not the effect I was going for. I have no idea if the Maca is actually doing anything at all, but I thought it was funny. Me? On a Vi a gra like substance? Hahahaha.

And I've decided I do like the Myer's Cocktail. It's hard to really sort out its effects since I had the overlay of a chest cold, but I did not stress dose, despite being decently sick. I had the reserves to keep me going. There were moments where I wondered if I would be able to do it, where I was sure I would need steroids, but they passed and I'm almost to the other side, steroid free. That has happened almost never, so I am excited.

It's interesting to me that there's a perception that it doesn't seem to have value (at least from what I've read). No one disputes the effects of a B12 shot or the impact of other anti-oxidants, but put them in an IV and boo hiss? That doesn't make sense to me.

I am not sure it helped my chest cold much. The feedback I felt in my body was that I'd just dumped a ton of stuff in my blood stream for it to process when it was already busy fighting the bug. In that sense, I think it slowed down my immune response, but once the infusion was integrated into my system, I believe it was helpful.

With the Myer's Cocktail, my body felt very 'active' like it was super busy doing important things. I have no idea what that work was, but the sensation was very 'buzzy' on the macro level. It reminded me of the 'activity' of my body working to make milk after my daughter was born. I could tell something major was going on then and I have that same feeling now.

I don't know if any of this will work long term, but short term it's had a positive impact. I have some criticisms of things too and I hope to write a post on that once I've formulated my thoughts.

Wednesday, May 9, 2012

High as a Kite

Nine times out of ten, vitamins kick the bug's ass.

The tenth time?

The bug kicks my ass.

Even if I just had a mega IV infusion of vitamins.

I feel like I'm floating, a ghost in my own life. Loopy and swirling like a kite trick.

I don't think the doc believed me Monday when I said I was sick. It wasn't overt, in-your-face-sick. Yet. It was all gummed up in gooey lumps in my lungs, held in suspension.

By Tuesday you couldn't miss it since I'd lost my voice and had begun hacking like a lab pig forced to smoke 24/7. (They use smoker pig lungs in Anatomy and Physiology classes around here. Poor piggies.) My lungs feel like glass about to shatter every time I cough.

The asthma is a bit more serious than it's been, although I have hope it will resolve without any drama.

I am becoming progressively more tired and weak. Since I have to work tonight, that may mean steroids.

Which are not alternative medicine physician approved.

Ha.

I love the irony of my medical care. Mainstream medicine thinks there's nothing wrong with me, but since they can't empirically rule out adrenal weirdness and I have a decently documented medical history, they give me steroids just to be safe (after much complaining on my part).

Alternative medicine totally agrees with my view that the steroids royally messed me up and my system is not right. But they don't want me to take anything mainstream medicine has to offer.

Neither extreme partners with me or values my feedback. They all just want mute compliance from their patients--no matter the personal cost to the patient.

I feel like Goldilocks. Too hot, too cold, and never just right.

By the way, vegan and 'raw' vitamins taste like ass. Why is that? Is raw food veganism a masochism thing?

Tuesday, May 8, 2012

Shoot 'Em Up

I had my first Myer's Cocktail yesterday. It's an IV infusion of vitamins. Lots of vitamins. Then I had shots of B12 and D, right in my butt. I'm dipping my toe into the alternative medicine pool. I'm not quite sure yet how I like the water.

Oddly, the Myer's Cocktail triggered the asthma, which was on the edge anyway. I would start to ramp up into an acute attack and then it would fade away and then it would repeat over the course of the infusion. It was strange.

As usual, no one could get a vein, but they had some hot packs on hand and I drank some water. So, after three sticks and two IV solution bubbles under my skin, they finally got a line in.

I feel/felt pretty awful as a result. I don't know if that's because I'm fighting a bug or just because I'm me. When I had my first massage ever, it gave me such a terrible hangover, I was sick for two days. Sometimes when you stir the pot, you get yuck stew.

I spent most of the afternoon in bed just resting. And wheezing.

Monday, May 7, 2012

Lowering Expectations

Just when you think you know a pattern...

I've had significant GI weirdness now for three days. Surely one round of bad dairy would be done with me now?

The edema has gone from pretty much resolved to completely resolved and back again. At least my shoes fit though, which is the important thing.

The sore throat stuck around and is trying to be an actual illness. Even riling the asthma up a bit.

While I am very tired with some weakness, I feel no pressing need to take steroids.

Huh.

Sunday, May 6, 2012

Looking at Am Cortisol Tests

I have a sore throat.

Of course.

That's very consistent with how this all goes down.

Still, I busted a move to Maroon 5. Beyond that, I spent most of the day resting and taking it easy and feeling progressively better. Okay, to be completely honest, I got a little heavy-limbed and fatigued dancing, but I persevered. No one ever called me a slacker on the dance floor.

All that remains is the cold-that's-not-a-cold. Let's hope that will be gone tomorrow, or, rather, today by the time you read this.

I was going through my test results today, trying to organize the data I have. Something interesting caught my eye.

My am cortisol in February of 2010, before I was hospitalized and swallowed the steroid equivalent of a WMD was....8.

Which is not great. It's normal by most lab ranges, abnormal by others. I, personally, think it's low given how shitty 6 felt in 12/10*. If my system was trending low when the asthma hit, no wonder I suppressed so impressively in March 2010. I didn't have far to fall.

*That 6 is with 10mg of prednisone in my system, the actual, unadulterated value was likely below 5.

For comparison, the severe asthma episode of 2006 did not lead to suppression. Was the difference a higher baseline cortisol? The world will never know.

I've also been trying to get a hold of my 1998-99 ACTH challenges, believing they are an important point of comparison. I thought I had the starting values for the three that were done, but I just realized, I actually have one complete ACTH test from 7/99, about 3-5 months before they booted me off cold turkey.

As you review them, keep in mind, I was diagnosed as suppressed in Fall 1998 with an am cortisol of 1. By 7/99, we've got over ten months invested in waking up my HPAA.

Draw One: cortisol 1.3

Draw Two: cortisol 5.4

Draw Three:cortisol 7.17

Pretty crappy, eh?

Like I've said before, I don't think the 98-99 taper was all that well managed. I had pretty overt Cushing's the entire time. So maybe my system is crap or maybe the medical care was. Hard to say.

I would really like to get my hands on the other two ACTH challenges and maybe even see what my ACTH values were as well. So far, the Medical Records Department has stonewalled me even though I know for a fact the pulmo can pull them up in their system still.

But what I take away from this is I have a lot of movement in the HPA axis. I might be 8. I might be 18. Who knows? This is consistent with my complaint of feeling like my energy is a yo-yo handled by a psychopath.

Saturday, May 5, 2012

Loop-de-Loop

So, weak and loopy today. Still having some GI symptoms along with abdominal pain.

I wasn't going to type 'abdominal pain' because I don't want it to be true.

Anyway, I will try to out-rest this, but if tomorrow still sucks, I will do 5mg. But OMG that will be such a f*cking pisser! Geez Louise, this is just not fair. I was feeling so good too!

As for the edema, I've been doing some knee lifts and squats throughout the day just to keep fluid moving around. I also slept with my feet up again, as I've been doing all week. The weather is cooler today which helps, I think. Plus, I keep slamming back water followed by more water, trying to flush my system. It has to even out soon.

Tried Kombucha today as fermented foods aren't really part of my diet and that's something I'd like to change. It's kind of a weird taste. Like a fruit wine. It's also pretty low carb, just 7g per serving which was a nice surprise.

Hubby took the toddler this morning so I had some time to work (although, let's face it, me getting up and out in the world is so not happening today anyway). Re-wrote the set-up for a short paranormal story. Didn't like the first attempt. Now I'm happy and excited to finish the story.

I also made this in Photoshop. I'm trying to learn how to do this stuff as I actually really enjoy it and it saves me money if I can do my own graphic design.



And this was an exercise I did in 'warping'. I thought it was cool at least.



PS: The fridge is still broken. Ha. Fortunately, it works for the most part so we can use it, but it leaks water constantly.

Friday, May 4, 2012

Me and My Silly Expectations

I am sick. It hit me while I was walking, trying to exercise. Gah. I cannot win! However, I don't think it's adrenal because my body is not trying to vomit simultaneously, which is what it usually does.

Of course, since it's 'stress' it triggers some adrenal badness anyway. It remains to be seen whether this will escalate into something requiring steroids or not. I hope not (as always).

I think the refrigerator repairman made me sick. He heated the fridge up to 80F with the blow dryer and it took over 24 hours for the temperature to go back down. Even with ice packs in the fridge.

The cottage cheese smelled okay, but I had a feeling it was going to cause trouble.

In fact, I can't even type the words or think about it without nausea.

Let's talk about something else, shall we?

How about the edema in my legs? I seem to have gained quite a bit of water weight all of a sudden. My shoes are too tight. My stomach is pretty bloated. Just what I've always wanted...to feel extra fat! Thanks universe!

I'm drinking tons of water, putting my feet up and asking Dr. Google for help. I'm fairly confident this is nothing serious as I felt great up until I got sick just now. I suspect it's a delayed circulatory reaction to the steroids I took... last week? The week before? I lose track of time. I've had delayed reactions like this before, usually at higher doses, but never say never.

Coincidentally, I have a doctor's appointment Monday. In the interim, if I turn yellow or become short of breath, the ER will have the joy of dealing with me.

Oh good Lord, does it ever end?

Thursday, May 3, 2012

Stressing

We are on attempt five to repair our refrigerator. I am stressing because the last three repair teams from the Best Buy Geek Squad said the entire plastic backing would have to be replaced because it's frozen to whatever is behind it and can't be removed without cracking.

Today's Einstein is trying to melt the ice with a blow dryer.

Which I had to provide.

Because he didn't have the tools to do his job.

He also doesn't have the backing piece, which I know was ordered. At least twice. But still hasn't arrived.

Because Best Buy and Samsung are run by monkeys who've had their frontal lobes removed.

So I guess he's just trying to make do.

But I have this awful feeling that it will be at our expense. That we will be buying a new fridge anyway. That I will be throwing out food because it's going to be 90F today and he's going to take an hour to melt the damn ice. The cooler will only hold so much.

As for the adrenals, I had great energy yesterday. Awake, alert--the ever elusive normal that I crave. I had a Coke Zero too and wow! Can I get a ZOOM ZOOM? I love caffeine. In pop. Not so much in tea because it just doesn't hit my system the same way.

I was wired yesterday in the most delicious way. I would love to do that every day, but I truly don't believe that pop in any form is really all that good for you. Not that the anti-pop science I've seen has been all that convincing. However, I do think, if they keep looking and graduate to double-blind placebo type investigations vs. the weaker observational studies I've seen dominating the media, that, eventually, the evidence of diet pop's badassery will be irrefutable.

Meanwhile, I will attempt to keep my caffeine-in-pop addiction confined to one or two indulgences a week. And maybe try harder to get hooked on coffee (blech).

Wednesday, May 2, 2012

Speed Typing

I have two minutes. Why am I here? Procrastinating! Say it with me now! Pro-cras-ti-nating.

Yesterday was the first day I didn't have to take a nap. I had one wave of weakness and fatigue and that was it.

Here are things I think about.

What do people in Asia do about soy sauce and high blood pressure?

What do Italians with GERD do about all the tomatoes?

I wonder how culture influences medical treatment/advice in those cases.