Search This Blog

Wednesday, September 5, 2012

Atlantic Beach Vacation in Pictures - Mostly Simon :)

Morning visit to Fort Macon
 
Happy in the play pen
Me plus beach view
 Simon waking up from a nap in his carrier
Sometimes I steal Simon so I can take pictures of the two of us :)
 Rabbit!!
 Lemon face
 Evening walk on the beach
 Me and super longtime friend Erica
 JoEllen and Simon
 Family pose outside the Aquarium
All of us!

Thursday, July 12, 2012

My freaky clinic appointment





My last dose of antibiotics tonight...sa-weet!

I wanted to tell you about my appointment today. (Follow-up from being on IV antibiotics for 2 weeks.)

The order of things was a little strange. I actually saw my doctor before (and again after) I did my lung function tests because the PFT lab was backed up. We agreed that I had made the right decision to do IVs and were catching up on other things when the lab technician came to get me.

On my first blow, the absolute strangest thing happened...I was at the end of my expiration, squeezing every last bit of air out of my lungs, when I suddenly found myself not at all in my own body anymore. It lasted for 15 or 20 seconds. I was trapped in a semi-conscious state, heaven and earth collided and everything was one. In short, I came very close to passing out - which has never ever happened to me before.

I told the technician but she wasn't too surprised. She had some sort of name for it, "vageling down" or "a near syncopal episode" - which was a fancy way of saying you almost passed out: you get light headed, start seeing stars...  It can happen when the blood rushes out of your head too quickly, which can happen with forced expiration like during a PFT test, but it may be worse since you are continuing to push air/exert pressure on the vagel nerve. I guess it was like a gigantic mondo head-rush, the difference being that it lasted longer. In any case, I was relieved to know that I was not the first one to experience this.

When I asked WHY this could have happened, she asked if I had eaten - yes, I had a normal breakfast; She said that I could have been a bit dehydrated - but I have been drinking water like a fiend for the last week as well as mostly staying out of the heat and besides it's only 83 degrees today! In other words, both of her suggestions were extremely improbable, so I found myself trying incessantly to figure out what might have been different about today than other days. I still have no idea.
"deepbreath" from lamchop.wordpress.com

 Back to PFTs: I took it easy on the next two blows. As in - I stopped way before I was actually out of air so that I wouldn't come to the point of la-la-land. And all and all, my numbers were up about 5%, which is good but not spectacular. I am happy with it, though, given how I am feeling symptomatically.

Honestly, I was a little shaken after 'the incident' for the rest of the appointment. I had told both my doctor and the technician and neither of them were too alarmed. So I didn't feel in any kind of medical danger. But when something weird and unexpected like that happens, I automatically feel anxious and my brain goes into detective mode.

I just hope that it never happens again.

 P.A. bacteria in a petri dish, Harvard University

The second thing that was kind of strange: my bacteria cultures from two weeks ago (i.e. right before I started IVs) showed my bacteria concentrations lower than I remember them being in a long time. Usually they are all 3 + and 4 + (4++ is the max), but everything was 1 +, except for my multivorans which was 3 +. My doctor said that in his experience, over time one bug tends to win out over the other ones. Is that was is happening, or is this just an accident? Is this a new trend or just a fluke? There can be a lot of variability to these tests, so I'm not putting too much stock in it, but I will be interested to see what happens going forward.

One other note on that. Not that it is necessarily good or bad, but the multivorans is one of my better bugs in terms of antibiotic resistance. In other words, lots of antibiotics still theoretically work on it (unlike my other bugs that are more particular.) So like I said, I will be watching the 'Battle of the Bugs' closely.

And, finally, a bit of good news. I had a bone scan this morning and both my femur and hip bones were WAY UP in density - yay! I am not sure why this is - I had an IV-bone strengthener about a year and a half ago, but with all of the Prednisone I take and the caffeine that I drink -- let's just say that I consider myself very lucky.

Monday, July 9, 2012

Sometimes it doesn't pay to wait

My co-worker, Mike, and I at TNC's River Jam Tent at the US National Whitewater Center - June 2012


Hello loyal readers!

It has been some time since I felt inspired to write, and you know what that means. Time for a quick run-down of what has been going on!

The big(ish) news is that I am currently on a 2-week course of IV antibiotics. I had not been feeling spectacular for a while (more congested, coughing more than usual...) for a while, but I was totally hanging in thanks to exercising a lot and my trusty stop-coughing go-to pills, guaifenesen. The cards really started to fall the week that I had a grant writing workshop in Greensboro mid-June - I was feeling super tired and run-down. I got started on some oral antibiotics which worked really well for a week or so when I went to see my doctor.

At that time, my numbers were a hair below what they were last time, which was also a little lower than they had been the time before that. My real concerns were my energy dropping and also that I have two awesome vacations coming up that I want to be in tip-top shape for. So we went for the IV antibiotics. And I knew right away that I had made the right decision. (And, for the record, Todd knew like three weeks before then that it was time for IVs soon.)

The day after I started on them I felt really horrible: tired, achy, malaise, fever, no appetite. But since then, things have been going along pretty well. I haven't had any trouble with the Tobra (I had some tinnitus the last couple of times I was on it, which can correspond to hearing loss) except that they had to increase my dose because my levels were too low.

But the really weird thing about all of this? Unlike every other time I've been on IVs when I would totally beat myself up about missing work and always be trying to do more than I should, I have been totally enjoying my time off! I feel kind of guilty saying that. But who wouldn't love an unexpected 2-week vacation? Of course it's not all fun, but largely I have slowed down and taken time for myself to heal. And it feels really nice.

Image taken from sodahead.com

In other news:
  • I am finished with my PT for my herniated disc/sciatica! And I leave there having a solid set of exercises that work really well to control my symptoms. Still have not gotten back to yoga - that is the next step. Also still doing monthly acupuncture and weekly massage (which is absolutely fantastically awesomely paid for by my insurance.)
  • Todd's dad has been staying with us a lot lately - he is getting cancer treatment here in Raleigh and lives several hours away. He started chemo (for the second time) recently and he's having a bit of a rough time of it. His health has been really up and down, and it's hard on all of us. Especially him. All of us are focused on our trip to Montana right now.
  • I got out with Elaine to sell some soap last First Friday! We sold it at a friend of our's bar. I know it sounds weird, it kind of is, but it's fun. 
  • Super excited about going to the beach with my family during the third week of July. And also  for our Montana trip in August!
  • Work is going really well. I have an intern! Who is both awesome and really talented. This is my first time really managing somebody and I really like it. Also, I was doing a bit of traveling in June and July - two trips to Charlotte and then Greensboro for the grant writing class. It was nice to get away.
  • Probably not news to any of you that the weather here has been brutally hot! We just broke the record for the number of days in a row over 100. Between that and the holiday last week, it's as good a time as any to be missing work and just laying low at home.
Image taken from kbosweeney.wordpress.com

Sunday, May 6, 2012

Two great beach weekends

Spent the last two weekends at the beach with Todd's brother, father and our four-year-old nephew Sawyer. Three generations of Platts! We had so much fun. I thought I would show you in pictures.

 Roger and Brad made a stopover in Raleigh to pick up Sawyer and Jill from the airport. This meant FOUR golden retrievers at our house!
 Todd, Dan, Brad - We went down to Myrtle Beach to celebrate Dan's 50th with him.
 Todd, Sawyer, Brad
Todd and Sawyer playing frisbee at Holden Beach

 We went to a nearby TNC preserve - the Green Swamp - to look for Venus flytraps. Sawyer had a lot of fun but got tired at the end.
 Sawyer and Brad on Holden Beach.
 Sawyer loves his puzzles!
 Sawyer and I in the Green Swamp.
Sawyer's first time surfing - he's great at practically any sport he attempts.

Monday, April 23, 2012

Lost...and found?

Last week I had my 5th steroid injection (didn't seem to do a lot of good, unfortunately, same as the last one) and I had my first appointment with a new physical therapist. I really liked this woman.

She was quickly able to tell what was going on, and it is two-fold: My flare-up right now is more of an SI joint issue than a herniated disc issue, she thinks. Both things are at play, but the SI problem is predominant. And I agree. THIS IS GREAT NEWS! Because it means that surgery for a disc is far away from an option now - right where I want it to be.

But it is kind of a tricky thing because the treatments for the two things are kind of opposite: for a disc issue, you want to do back-bending type exercises and for the SI joint you want to do forward folding type of things.

The very first thing is to get my piriformis muscle to release. It runs through my glutial area and is SO unbelievably tight. Super super tight. It's really painful to stretch this muscle, but I'm hoping it will get easier over time.

Anyway, I really like this new PT woman and I'm hoping that she might be the person I've been looking for. I have gotten lots of pieces of the puzzle figured out from various people. My acupuncturist probably had a better idea of what's going on than anyone else before now. But no one has had as good of a grasp as this woman.

So we'll see. I'm hopeful...kinda. :)

Sunday, April 15, 2012

Back saga, part deux


For those of you who follow my blog, you may recall a post I wrote back in September outlining the journey of my herniated disc. (What's up with my back?) To summarize, my problems began a year ago and I have tried almost everything imaginable to treat it. While much of the past year things have been okay and the pain has been either manageable or, in some cases, completely gone, I find myself now in another fairly acute flare-up. I'm frustrated. I'm discouraged. I'm tired of being in pain. But I am not giving up!

This coming week I am going to try a couple of things:
  • I am going to see a new physical therapist, one who knows a lot about both herniated discs and how to exercise properly with them.
  • I am going to see a woman who does massage/body work/energy healing. My friend has been recommending this woman to me for years, and now finally seems the time to check her out. I'm a little skeptical but at this point I have nothing to lose.
  • I am also going to continue with my acupuncturist (yay!) and incorporate 30 minutes of massage before my treatment.
  • Getting another steroid shot in my back. The last one didn't help but they are usually done in sets of two or three so maybe something good will come of it.
Additionally, I started a new medication this week called Neurontin. It was first used to treat epilepsy but is also used to treat nerve pain. It does seem to be helping - I've been taking a lot less pain medication since starting on it - and I haven't had any side effects with it yet. So it is promising.



Saturday, March 31, 2012

Cutting back

I've been really lucky in that Prednisone has never had the "monster" effect on me - except for maybe a few times when I was on a really high burst. And even then it mostly manifested as having a lot of extra energy (i.e. an extremely clean house!)

Some history: During 2008, my lungs took a pretty big dive. Part of getting my lung function back - which turned out to be an incredibly long process - was adding Prednisone to my routine. It worked really well for me. Almost, it turned out, a little too well.

I say this because it's not uncommon for cystics to do a burst of Prednisone during an exacerbation - they'll start as high as 40 or 60 mg/day and taper off of it in a week or so. My problem was I responded so well to it that I was never able to taper off completely. I've tried though! Part of me starting allergy and Xolair shots in 2009 or so was to try to get me off of the oral steroids. I'm sure the shots have helped, but not enough to get me off the Prednisone.

I've spent a large amount of the last four years on 10 mg a day. This isn't a terribly high dose, but ideally I'd be somewhere around 5 mg. I honestly don't think it's realistic to be off it entirely. But steroid use does not come without consequences: Long term use is not good for your body - steroids depress your immune system and contribute to bone loss. That's especially bad for cystics because we have a predisposition to bone loss as it is from our malabsorption issues. I was diagnosed with osteopenia (a stage of bone loss less severe than osteoperosis) before I even started Prednisone.

So, since I have been feeling so awesome lately and I'm in an 'exercising like crazy' stage, I thought this was the perfect time to try to taper down. This happened in several steps - each one would make my body feel like total crap for at least a day - and the result is that I am now down to 5 mg! I am so happy and really proud of myself.

So far it is going well. I do notice a little less intensity of being able to exercise, but I'm hoping I can build that up in time. Go me!