Saturday, July 30, 2011

I'm not sorry I can't eat that

Text from my friend: "Snickers and captain crunch. Snickers awesome, captain crunch mushy. They added marshmallow, so it didn't slow us down much." 

Wednesday, July 27, 2011

And the results are in...

So I met with my team of doctors today to go over all the results from last week and discuss options. I used to attend summit meetings/grand rounds like these for my patients, so it's always interesting to be on the other side now. Humble much?

To make things fun and to get an idea of my standing (and because I'm an overachieving teacher's pet) I made them give me grades on a letter scale.

Here are my scores...

-Candida level is less than 25% and should hopefully be eliminated in the next 6 months!
-Aspergillosis is 65%, down from 80% in December. Hey, I'll take it :)
-My average plasma glucose concentration over prolonged periods of time is staying stable
-The immunoglobulin levels have decreased (auto-immune response is lessening)
RAST scores:
-Dates got a 1 on the RAST (low level reaction) --> can eat on occasion!
-Agave got a 2 " (moderate) --> still can't eat, but it used to be a 3.5, so maybe soon...
-Butter got a 0 " (no reaction) --> I can eat small amounts!
-I didn't pay attention to the others bc they were all firm NOs...

Way to go blood!

***Side Note: I have been wanting to eat butter and dates for months, so I could eat some of the health nut desserts I've seen around and bake some sugar-free, gluten-free recipes, so I am SUPER excited about this!***

-Colonoscopy/ultrasound looked really good with only a few spots of old growth remaining
-No new growth detected
-GI tract is healing
-Gut Flora is replenishing

Great job GI!

-Xray/Fluoroscope looked great
-MRI showed no new growth; old growth shrinking
-No more growth or swelling in brain!
-Electrical responses properly being sent from brain
-No more growth in eye orbits (I would like to express a YAY! for not bleeding from my eyeballs anymore!)
-Cerberospinal fluid (brain juice) clear of infection

Way to rock it, Neuro!

*Big fat F
-My "compound muscle action potential" is very low. I don't really know what that means, but it's not good...
-Messages sent from brain are getting lost or altered before getting to foot
-Primary muscles are losing function from lack of mobility
-Secondary muscles are taking up slack and altering gait and skeletal structure (overcompensating)
-Site of nerve damage unknown

I'm really disappointed in you, PT :(

-Bone density is great (Years of drinking milk by the gallon pays off!)
-Toe joint protrusion/hammer toe is getting worse with nerve problems
-Surgery to restructure toes is inevitable

You may have failed, but the important thing is that you tried

-The ole Ticker is doing awesomely!
-Doing a fine job of pumping
-No signs of fungus at all
-Staying in normal ranges and not overworking itself

Cardio, you're a rockstar!

-Lungs still pretty necrosed, but healing
-No purulent sputum present!
-No fluid!
-Fungal balls are not recolonizing; a few sections were able to be removed :)
-No bleeding
-Nasal passages still inflamed but not infected; muscosa has thinned
-spirometry volume and velocity is improving, with my peak expiratory flow is at 300, up from 200 in December (average for my age/height is 430)

Lungs, you win for most improved!

RENAL *Grade incomplete (waiting for results)
-Looked good on MRI, scans and xrays
-No signs of fungal growth
-Pee tests show healthy filtering
...waiting on blood results

Overall, I scored a C+! Barely passing, but passing nonetheless."It doesn't matter if you win by an inch or a mile; winning's winning."

Things are looking pretty good aside from my stupid foot.

As far as my jaw pain goes: I wasn't supposed to have any prescription pain meds after 5pm yesterday, or any ibuprofen or aspirin after midnight last night, before the bloodwork today, which made last night one hell of a party. This morning I felt like a trainwreck, but by the time I was done at the doctor and could have taken something, the pain had dulled to an ache. Thank you!

Today was a really good day and to top it off I get to go to Vegas in a couple weeks, by means of some divinely calculated events. My Dad texted me this morning saying he'd be in Vegas for 5 days on business. I was able to go last summer (read about it here, here, and here) and it was really good medicine. The catch is that he's there during the week and, unlike last time, I have a job. Then, my boss informed me at dinner that she's taking that week off work to spend time with the girls! (Which is better for them, since they've been rotting their brains lying in bed watching movies with me all week) *Cue phone call to Dad* Thus, just a mere 8 hours after my Dad suggested I come stay with him, I was booked for 5 days in Sin City. It's gonna be so hot. I can hardly wait :)

*I meet with the infectious disease doctor tomorrow to talk about the results and make a decision about course of treatment, medicine, possible clinical trials, etc.



"How long the night seems to one kept awake by pain." -Bernard Joseph Saurin

Last night was rough, like a wrecking ball to the face. My last pain pill was yesterday around 4 and by 11 pm I thought a cannon was going off in my jaw. I took some Ibuprofen but that just made my gums bleed and my jaw throb.

Thank you to my newest addiction to All My Children's Marissa/Bianca(Minx) storyline for pulling me through.

I have watched every clip of these two from December to now in the past couple weeks and last night I spent several hours watching fan vids. What did we do before YouTube?! Nothing like a cute couple to take your mind off your pain.

This morning I feel like a train ran through my face, but I'm not bleeding or puking, so I'm going to consider my position to be favorable to yesterday. Gratitude, Dude!

Now I'm off to find out test results from last week and have blood drawn...

Tuesday, July 26, 2011

From Vom Fest to Nom Fest

I'd say the pendulum swung from suck to smile by day's end

Jaw breaker update

Back in April I had a dental disaster that has resulted in a dozen trips to the dentist and oral surgeon for: a bone biopsy; two root canals; three crowns; lengthening of an existing crown; five fillings; three deep cleanings; and the latest and greatest, a gum flap removal and abscessed bone extraction (the mold caused the abscess to grow & eat away part of my jawbone).

I find joy in knowing I'm putting my dental teams' children through college.

All the dental hulabaloo happened right before I was originally supposed to have all the medical tests I had last week and has been a damper on that moving forward the past few months. Finally, my mouth was healed enough that we could moved forward with the tests, before diving back into the oral ordeal, which is what I had the pleasure of doing today.

I still have at least two more appointments and then, FINALLY, I will be fitted for my new mouthguard and done with this entire ordeal.

Yesterday was the gum/bone extraction to rid the decayed section caused by my jaw being infected.

(You can right click, "open in a new tab" to read it)

So I was originally told that they would only be taking out a small section of gum, and possibly part of a tooth (I should know by now nothing's ever easy) but they ended up taking more gum than expected once they got in there. They also decided to take out a piece of bone between/around the two affected teeth, too. Which I was thrilled about, of course.

Fun times

This is my mouth after, with cement over the affected area to keep the stitches in place and the wound clean (this later proved to be a false security).

I made it through all the tests last week without pain meds, but when they're sawing a chunk of your jaw out, you bet your gold fillings, your hand's out when they offer drugs. I swam through the rest of yesterday in utter bliss.

Then today my mouth kept bleeding and bleeding and bleeding so I had to go back in. Apparently I'd ground the cement in my sleep in a way that it had popped a stitch. (No surprise there) They put in a few more stitches and more cement, gave me another pain pill and sent me on my merry way.

Only this time, when I got home I didn't immediately get in bed and stay there for 16 hours like yesterday (big mistake), but instead decided to eat some cantaloupe (big mistake #2) and stand around for no good reason (mistake trifecta). This boded well for me when I projectile vomited all over the white rug.

I was supposed to have more bloodwork done today but obviously if you're bleeding and barfing it can't happen, so it might happen tomorrow.

"To a person with a toothache, even if the world is tottering, there is nothing more important than a visit to a dentist."
-George Bernard Shaw

I have my summit meeting with the whole medical team tomorrow to go over all of last week's results!
*Fingers crossed*

Sunday, July 24, 2011

Saturday, July 23, 2011

This update is brought to you by my left lung

My lungs, though wounded, have chosen to deny The Dark Side and step into the light.

My left lung, the smaller, weakling, runt of a respirator is really pulling his weight lately. It's about time, dude!

The fungal balls do not appear to have any new growth and they were able to nab a few, (can you believe that they wouldn't let me keep them?!) and the scar tissue looks to be healing. The biopsy results are still pending, but my pulmonologist seems hopeful.

Monday I go in for what I really hope it my last dental procedure.

Tuesday I'll have more blood drawn for 57 (facetious overestimation ) more tests.

Wednesday is a summit meeting with my medical team to go over this weeks findings.

Thursday meet with infectious disease doctor to discuss possible clinical trial.

Friday sleep. Lots and lot of sleep.

Thursday, July 21, 2011

Update THIS

Today was rough. Really, really rough.

For starters it was the anniversary of the death of a very dear friend. 3 years later and I still haven't completely let myself feel the entire weight of it: the sadness, the tremendous feeling of loss, the anger, the guilt. Today those feelings finally broke free and I was able to truly grieve entirely and fully; and in doing so process and begin to make movement towards acceptance.

Along with those feelings came a flood of other moments of loss from this past couple of years- and wow, once that floodgate was opened the losses rolled in like a river. If I hadn't taken a moment to pay gratitude to what I've gained, it surely would've swept me away.

The stress test went alright. The bike was pretty hard to do with my damn foot, and I got really frustrated, but I didn't pass out or cough up a lung (which makes me hopeful for the bronc tomorrow). I did what they wanted me to do and I'm pretty sure the results are good.

The EMG & Nerve Conduction studies were a total bust, though. They basically electrocuted the bejesus out of me for over an hour. No seriously they sent electrical waves through my body. I'll take 50 colonics over having to do this again!

So basically, the nerves in my foot failed the test horribly. When they manually send an electrical current to my muscles they reflexively function, but if I try to manipulate them myself they don't. My brain is sending the message, but my foot isn't getting the message. It's like someone took the phone off the wall.

They think there is a weakspot along the line, probably some nerve endings that got irritated by swelling from the fungi overgrowth (most likely problem areas from old injuries). Hopefully with time and therapy they'll recover. *Fingers crossed*

Also, the steroids have weakened my muscles significantly, moreso than expected. Gee, thanks

Furthermore, my Extensor hallucis longus tendon (top of foot) is overstretched; my flexor hallucis longus tendon (big toe) is tight; my posterior tibialis tendon(arch) is shortened; and my flexor digitorum longus tendon (bottom of foot) is tight. In layman's terms: stuff's f-ed

This makes sense, considering my foot looks like this:

But, I didn't realize the extent of damage that the muscle weakness was doing to my tendons.

It was a deflating appointment after everything else this week looked so promising.

My loss of mobility has been really hard on me (Almost as hard as losing pie) and coupled with really missing my friend, it was an ugly-sob-in-the-middle-of-the-clinic-making-everyone-extremely-uncomfortable kind of day.

I'm glad my heart & colon have forgiven me, at least, since my foot so obviously hates me. My blood is still Switzerland. Tomorrow my lungs will choose sides...

Wednesday, July 20, 2011

TMI: The Barium Experience

It's about to get real intimate.

Now, I've already posted pictures of the inside of my butthole, so really I feel we're pretty close, you and I...

I'm about to give you insider information that hasn't yet made it to the streets (As far as I've ever heard anyway).

If you ever have the opportunity to have a colonoscopy, you will know that you have to clean your pipes beforehand. For me, this meant being on a liquid diet of veggie broth for 2 days prior to the procedure, and a few rounds of laxatives... I'll let you fill in the rest.

The day of, the doctors are kind enough to give you a thorough cleanse via an industrial strength enema...How people enjoy douches or bidets is beyond me.

You also need to let your colon forgive you the day after, which, again, for me, meant veggie broth.

Today I had my first real meal since Friday, so as things go, tonight I had to, to put it politely, make.

By golly, my colon is so pristine and heavenly that my poop was an ethereal WHITE!

There, now you're privy to insider info. Do with it what you will.

My week, some more...

- Nasal probe (My chronic fungal Sinusitis is finally clearing out)
- MRI (They played show-tunes while I was in the tube (I'm on a show-tunes kick this week) which was awesome!) My new fillings were pretty angry about this procedure, but other than that it was another positive day.

Things are looking really good so far!

- Stress Test
- Electromyography
- Nerve conduction study

-Broncoscopy to test Bronchiectasis
-Possibly a Mediastinoscopy

- If steroids made any changes to nerve regeneration/foot muscle strength
- If/when I will have foot surgery
- Heart function
- Presence and locations of fungi

*Waiting on bloodwork results from:
-Glycated Hemoglobin
-Immunoglobulin E (IgE)

Tuesday, July 19, 2011

My week so far...

-Colonoscopy to check how my Gut Flora is regenerating and look for the pressence of Candida and Aspergellius.

Last year


There is still a bit of growth (white patch near back of left pic & left forefront of right pic) & some raw spots (yellow areas)...but wow, I've got a good looking poop chute, if I do say so myself!

- Barium enema

What a good-looking gi tract!

- Abdominal ultrasound


- Barium swallow
- Chest X-rays

Things look so much better compared to 7 months ago

- Chest & GI Fluoroscopy
. (Things looked really clear and no Bronchospasms were detected)
- Dual-energy X-ray absorptiometry (to see if prolonged steroid use is affecting my bone density)
- Full blood work-up

-If the steroid has aided in healing my GI tract and lungs, as hoped
-If I will need to continue intramuscular Steroids (Methylprednisolone); move to oral steroids; or stop them all-together
-If the sterioids/antifungals are causing severe side effects to my body
-If I will switch from IV Voriconazole to oral...with the possibility of trying out Posaconazole (if we decide no more steroids)

-Having a colonoscopy without sedation isn't so bad, but makes me appreciate the fact that I'm not a gay man, or a straight girl with an adventurous boyfriend
-Singing show-tunes with your x-ray tech is really the way to go and I highly recommend everyone try it
-Watching soaps with your phlebotomist makes getting stuck totally worth it (Minx storyline on AMC, anyone?!)

So far, this has actually been a pleasant experience and even allowed me some time to hang at the beach!

Wednesday, July 13, 2011

Help find a cure for Aspergillosis with a simple click

An organization in Vermont is giving $10,000 to non-profits and we're hoping to get some of it to fund Aspergillus research.

Please click on this link and then click like. Then choose "other" and type in "Aspergillus Association of America."

We could really use the support. As a little known illness with a very small organization we need all the support we can get to help find a cure.