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.

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.

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.

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!

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.

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!

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.