Merry Birthday New Year!

Simon!

Reading over my last post, I realized that it has been almost exactly three months since I last blogged. I had just been to my quarterly CF clinic check up, as I have again last week. The clinic visit went well!

• PFTs (pulmonary function test) were up - again! And my FEV1 (a particular measurement most looked at by CF docs to tell the condition of the airways) was the highest it has been since 2007.
• Since I was having some trouble on my experimental "off" months of inhaled antibiotics, we decided that I will only go 2 weeks off - it is still good in the long run to have some kind of break.
• Finally got some samples of Spireva, a COPD medication that some CF patients have had success with, so I'm excited to see how that goes. There is both a theoretical benefit and a theoretical drawback for this medication with CF so we'll just have to see.
• I didn't end up getting on the blood pressure medication because basically all of my readings at home are fine. I am happy about that.

I have to say, I was surprised my PFTs were up this visit. Let me tell you what happened. Last visit I was 50% and I had been exercising like crazy (literally, daily) for about a month. Symptomatically, I was also feeling great.

This time, my first attempt at blowing (doing PFTs) I got 51%. Blew again and I was 51%. The third time I was really trying for 52% but made it to 53%! Now the norm is to blow three times, as long as your numbers are consistent, but the technician wanted me to give it one more try to see if I could go higher. (For me, it's usually diminishing returns after 3.) I did and - wala! - I hit 54%.

Such is life with CF. Last visit, exercising like crazy, 51%; this visit, been more slack and doing less rigorous stuff (more walking), and I hit 54%. Could be the time of year (fewer allergens in the winter), could be just the randomness of CF. Who knows.

So that was clinic, now let me catch you up on everything else that's been going on for the last three months!

Some Cool Trips:

• Went to Cleveland for Thanksgiving with Todd to see my dad and family there. We had a great visit! Went to a minor league hockey game, drank good beer and ate good food. Oh, and on our way into town we went by the Christmas Story house (the house where some of the movie was filled is in Cleveland.) Above is us with the famous leg lamp.
  

• My mom and I flew up to Michigan for Christmas to see my brother and his family. It was incredibly awesome seeing sweet little Simon (my then 4-month old nephew)... at the end of our trip, we all went to Detroit for the night and Nate and I went to a Red Wings game at Joe Louis Arena! That was very cool. A great Christmas gift from Nate and JoEllen. :)
  Above, me holding Simon, in his coat of many colors.
  
• We are getting ready for a trip out west in about two weeks. We are going to Vegas with some friends, but are flying out early to visit Joshua Tree National Park in California and go see my friend who lives near Anaheim. AND! We found out that the Carolina Hurricanes are playing the Anaheim Ducks the very night that we are going to be in town. So that is very cool. We are going with my friends.
  (p.s. - I'm usually not as much of a fanatic about hockey as I have been the last few months going to all these different arenas. It has just worked out that way.)

A (hopefully) Short Update on my Sciatica/Herniated Disc:

Things have improved quite a bit since three months ago. At the time, I was having daily fluctuation in my pain level, but overall still a lot of discomfort. I went along like that for a while. Then over Christmas (no doubt partly because of carrying around my precious nephew so much! and lots of standing and sitting in hard chairs) my leg got way worse. So I decided to get a third steroid injection in my back (I was allowed to do one more before March.)

That went really well and helped a lot. I babied my back after that really trying not to lean and bend as much as possible. I've also been incorporating some other things I feel have helped over the last several months.

The other thing that I tried, and I actually started this before Christmas, was seeing an acupuncturist. I went to this woman who was highly recommended to me, but unfortunately didn't have much success with her. So I started seeing someone else last week. I hope that will be a more fruitful relationship.

Doc on spa day

This was a good weekend: Friday we went to an awesome Hurricanes game (they beat the #1 west-coast team 3-0!), had two good walks with the dogs in the brisk fall weather, and got to sleep in two days in a row! Tonight Todd's dad and aunt are driving here for a Monday appointment and I am cooking dinner for them and having my mom over, too. Looking forward to that.

In dog news, the boys got their second bath/hair trim of the year this week! They looked so adorable and were kissably clean. :)

In cat news, one of my cats (Diosa) has decided that she doesn't like jumping all the way up on top of the entertainment center to eat. (The food is there so that the dogs can't reach it.) So she sits at the foot of it and meows pathetically for some kibbles. It seems like she spends her days asking for either food, catnip, or to be let out! In her defense, she is 11 or 12, is somewhat visually impaired, and has never been the most coordinated of cats. All this is to say... we knew this day was coming. :) Hopefully we can find a solution to this problem soon.

In human news, I had a good CF clinic appointment this week. The highlights were:

• FEV1 was UP
• Decided to start taking a month off of my inhaled antibiotics in between cycling
• Started on medicine for high blood pressure, which I have (mysteriously?) developed over the past few months or so

My lung functions being up is no doubt a result of my almost daily exercising lately. I have been careful not to irritate my back (which by the way is doing poorly again - more on that in a minute) with pretty good success. It is so nice to be able to do something to feel in control of my disease. And nice to see results both in the numbers and in feeling clearer every day. Exercising really does seem to make my lungs work better. My doctor says that exercise is the most important therapy that we have.

The change in inhaled antibiotics is a BIG deal. I have been constantly rotating two antibiotics for three or four years. When I started doing this, it was because I was in the middle of a rough period of infections that I was having trouble coming back from. Because of this we wanted to do everything to prevent further decline.

Now, in light of just having finished an inhaled drug study in which I was off inhaled antibiotics for either two or three months, and the fact that I did really well, has led us to reexamine our strategy. Since the effectiveness of inhaled antibiotics decreases over time, hopefully using them less will make them effective for a longer period of time.

One interesting thing, and something I have myself thought for a while. My doctor says that while there are no studies to prove it, he suspects in the future CF patients will be rotating more antibiotics. Like, Cayston one month, then Tobi, then Colistin, then (the upcoming) levofloxicin, possibly with a month off in-between...so that your bugs are seeing different classes of antibiotics all the time. He said that he is not opposed to me trying this now, if I am interested. So I just may!

My high blood pressure is possibly the result of being on daily Prednisone (but I have been on that for years, so I don't see why now would suddenly be a problem), possibly because I am taking Aleve daily because of my back, or possibly another reason. I think that both of my parents are on or have been on meds for this, so I may be predisposed to it.

Anyway, I would by lying if I said it doesn't bum me out. Another freakin' thing to deal with. But it seems to be relatively minor. And if Aleve is the culprit, well, I won't be on that forever.

The deal with my back is that the first two steroid shots really helped. Then, the evening after my follow-up appointment for that, my back got irritated with a bike ride and was increasing bad the next week. I am back to having more regular pain and taking 2-3 Aleve per day and on top of that I am taking the tramadol pain medicine they prescribed regularly me for the first time.

Trips galore

Cutest family! My brother Nathan, wife JoEllen and Simon sleeping peacefully in the Mobey sling

I apologize for the gap in blogging. As always, a lot has been happening, but I will give you the Cliff's Notes highlights.

After two epidural steroid injections, my back and leg are doing much better. I have gotten two shots in the last month and each went pretty well. The first one got me about 60% better, the second about 90% better. Most of my day-to-day pain is greatly minimized or gone. At this point, still in the "acute" phase, I am supposed to take it easy with stretching, bending and twisting for the next month or so and then I can start phasing that stuff back in and see how it goes. Herniated discs can take 1-2 years to heal. The cortisone injections will help me deal with the pain/tightness/discomfort in the meantime. Hopefully I will not need too many more of them.

Sam and Todd at Ship Rock, off the Blue Ridge Parkway

We had a great trip to the mountains three weekends ago. It was the first time we had been there all summer long! We arrived just in time for a wonderful patch of fall weather. The skies were blue, temps were cool. We went on some awesome hikes in the Linville Gorge and off the Blue Ridge Parkway. Great exercise and great fun.

Me and Simon @ 8 weeks old

Mom (grandma!) and Simon, sleeping his favorite way (being held and on his belly)

Had an incredibly awesome trip to Michigan two weeks ago! I absolutely fell in love with my new nephew. He is so sweet and cuddly and kissable. I've never spent that much time around a 7-week baby. It was really amazing. All of his little grunts and uncontrolled movements and facial expressions... he's just a little ball of innocence. Looking so forward to going up there for Christmas.

On Saturday, we rode the train to Charlotte to see a Checkers (minor league hockey of the Hurricanes) game with some friends. We stayed right downtown - it was a lot of fun!

View from our room, downtown Charlotte

Sort-of surprisingly, my health and lungs have held up through all of this traveling. I say 'surprisingly' both because this is getting into my bad time of year for lung infections, and because I've had some hemoptysis over the last few weeks (which can be a sign of infection.)

Unfortunately for the inhaled levofloxacin study I was in, I had to start back on my inhaled antibiotic regimen, and also added in an oral antibiotic to give me a boost. With that, continuing to exercise, and trying to get enough rest, etc. my lung functions have returned to where they were before my recent slump. Yay!

What's up with my back?

Welcome to the newly named "L Word" blog. I'm not sure why I felt inspired to make the change except that during a brainstorm one night I found it to be particularly clever - that and I had been a little disenchanted with the name "Catboogie's Dream."

As most of you know, I have been experiencing leg/back issues for the last several months. Now that I have some answers about what is really going on, I wanted to fill you in more in-depth.

A herniated disc happens when part of the disc (in most cases already degenerated to some degree) pushes through the lining and, in my case, pushes on the sciatic nerve

First, to review, how the issue of how my herniated disc came to be:

• I have experienced lower back pain, with occasional flareups, for years (we're talking possibly since high school)
  
• For several years, I noticed what I thought was just a "tight hamstring" in my right leg, but really only during yoga was it noticeable.
  
• Last year, the issue became concerning enough for me to go to the doctor and pursue physical therapy (PT), but that fell through with a trip I had planned and other life stuff - and it eventually got better.
  
• April of 2011 - major flare-up; I wake up one morning and can barely walk, can't stand up straight for several days; eventually right foot becomes partially numb which prompts me to return to the doctor.
  
• Doctor does an xray, which is basically fine, and says my symptoms should go away with chiro and PT. I am loosely diagnosed as having "sciatica." I ask for an MRI but they say insurance won't approve it until I've tried the other things.
  
• My first step in recovery is to ice frequently, not exercise (which kills me), and I am officially banned from yoga for the forseeable future. Unfortunately, I can't take Advil or any NSAIDs because I am still on coumadin for my blood clot. I am finally cleared to start PT after a couple of months.
  
• After starting PT, I am improving. Yay!
  
• 3-4 weeks ago, I am standing at the sink and cough, and feel something happen in my lower back. At first it doesn't seem bad, but I now point to this as the straw that broke the camel's back.
• Things have been getting steadily worse since then. First back pain, then more leg pain: Now it hurts to stand for very long and sitting is also often uncomfortable. I am icing and taking Aleve like crazy.
• Finally return to my primary care doc and we decide to pursue the neurosurgical route, if nothing else than just to get a diagnosis.
• Neurosurgeon has me get an MRI, shows a large herniation. Brings me in and recommends trying local cortisone shots (also called epidural spinal injections) and then a revisit; says I am borderline for surgery. Gives me pain medicine. Tells me to stop PT, chiro, take it easy.

This is pretty much what my MRI looked like; a black disc means degeneration, lowest area (arrow) has a protrusion

That brings us up to now.

I liked the surgeon I went to see, who was recommended to me by my physical therapist (who I love, by the way) as the best guy in town. I was very glad that he wasn't trying to rush me into surgery. He understands it is a last resort, and that general anesthesia is especially hard on people with lung problems.

However, I am not feeling completely confident about the current plan because from what I have read about the steroid shots, there is such a varying degree of success. And sometimes they don't help at all! Not that I have anything better to suggest. [ I am so willied-out by the idea of a a spinal injection I haven't even been able to think about it, by the way. It's like flying. I just schedule it, then show up, and that is when I can start worrying. In this case, it will be Wednesday at about 2:30pm. :)]

There is a bit of a bright side here. I realized this week that this is really just a quality-of-life issue. I mean, sort of just. With my gallbladder issue, when I was facing surgery, there was a real risk to not doing anything. There was an added fear factor on top of the medical issue itself. However, there is no real danger that can come of this not being treated or getting worse besides pain and discomfort (as far as I know). This thing is going to heal on its own eventually, it just depends on how much time I can give it and how much help it needs.

Now, given that, with my CF, I need to be able to exercise (and, please universe, one day get back to yoga) and I will always be coughing, etc. And the fact that I don't like taking pain meds around the clock and being attached to an ice pack, there is an interest there to get this cleared up asap. I want to give this time, but it is hard to be patient when you are in pain.

Lastly, another bright spot. My lungs continue to be doing really awesome right now! (I actually have still been exercising a couple of days a week.) Possibly because of the new inhaled drug study I am participating in. Although that actually brings up another issue: in order to finish this drug study, I will need to hold off on surgery (I would think) until after it is completed, which is five weeks away. Hard to think of hobbling along like this for that much longer.

One step at a time. I go Wednesday for my injection, if that goes ok, I will get another one in two weeks and then go back to talk to the neurosurgeon. In the meantime, I am making a concerted effort to heal myself, and plan to read up a lot on all this stuff, and possibly pursue alternative treatments before surgery will really even be an option.

Photo 1: Herniated disc from Squidoo website
Photo 2: MRI of herniated disc from Peak Performance website

Roses are red, violets are blue

Roses are red

Violets are blue

Maybe if you've nothing nice to say

You're best off to wait and blog another day.

I'll admit this is how I've felt the last couple of weeks. When I recently told someone about my blog, I found myself saying, "I try not to write all about health stuff because I find it's kind of depressing and most people aren't really interested in reading about it." As soon as I said that I realized that my blog has been almost exclusively about my health adventures over the last year or so. (And that if someone didn't know me, they might think I was a total hypochondriac!) Which is not ideal, in my mind, but it really is the stuff I most enjoy writing about. It is therapeutic for me. So perhaps, in wanting to try to find a balance between keeping people informed and boring others to death, the thing to keep in mind is that my writing helps me. And maybe that is the purpose - I don't know.

In any case, in some ways it has been a hard couple of weeks. PT has dragged on helping only minimally while my leg has - for some reason - decided to start being in much more pain than ever before. Standing on it for even a minute or two will lead to pain sometimes so bad that it actually takes my breath away. Can you say not fun? The good thing is that as long as I stay moving, it is ok - took the dogs for a long walk downtown last night and it was basically fine. And, when I sit down, it almost instantly gets better, which I am also thankful for.

I had my initial visit at the neurosurgical doctor this week. I had zero nerve reflex on my right foot. I'm no doctor but that seems bad to me. The P.A., who I saw, said that means the problem is coming from the L5, the lowest vertibra. That there is something going on there affecting both the nerve signals and muscles in my leg and foot. Next step is an MRI. I had a horrible sinking feeling when I left the office. Like nothing good was going to come of all of this. Steroid injections? Surgery?? Not my idea of a good time. And by the way, why me?? With all this other shit I have to deal with.

But it is almost getting to the point where relief is welcome no matter the cost. I was thinking about how I used to be able to avoid irritating my leg during the first, I don't know, two years this was going on. But now, not so much - I can't avoid standing for god's sake! And when I think about the ways that it has changed the way I live my life, especially with exercise and yoga, well, let's just say that surgery (if an option) is no longer entirely out of the question. Which is a pretty huge thing for me to say. I really think that my goal of all this to to be pain free/minimal pain at least, to have greater range of movement, and to get back to yoga. Life just isn't the same without it.

In the meantime, I am (sometimes) barely getting by on Aleve, muscle relaxers and ice. I honestly don't know that the pills are doing any good. Oh, and my PT exercises. Still doing those. Sometimes they help. And others, like this morning, they seem to do nothing at all.

Drug Study: Even though I haven't been able to exercise my normal amount, I have seen my PFTs go up a little bit in this drug study I'm doing with a new inhaled antibiotic. I don't know if I am on the placebo or not. In any case, it is extremely awesome that even though the rest of me is sub-par that my lungs are totally hanging in there!!

Another great thing right now is that work is going awesome. I am busier and happier and more challenged than I ever have been. Also been doing a lot more writing and editing, which I enjoy (especially the editing.) I've been working more hours than usual and - being very conscious of getting enough rest at night - again, my body is holding up really well. And that's great.

Coming up: still waiting to see when a good time will be to go up north to see my new nephew Simon!! We are starting to think about planning some trips for next year. And, of course, hockey season is right around the corner. :)

Tonight we are going to celebrate my oldest friend Erica's birthday. Been looking forward to it all week!

Image taken from http://www.pictures-of-roses.com

A Change for First Friday

Our latest batch all ready for First Friday September

808 Soap has had First Friday, a downtown event during which art galleries stay open late and entice people in to browse with free wine and beer, on the third floor of a really old and quirky building downtown (Father & Son) for a year-and-a-half or so. We were all set for First Friday September with 25 new bars of soap and then... we found out that our normal place is still trying to resolve some issues before they can have big events again.

After a brief moment of panic, we decided to ask our friend who owns a bar downtown and, while 'selling bars in a bar' has a cute ring to it, we really weren't expecting much. It would be totally different than our normal crowd, would not get busy until later in the night after we were done, and who even carries cash anymore?

But it actually turned out really great! (Sadly, I got not a single picture.) Though the bar is the opposite of Father & Son in almost every way (3rd floor - basement; hot - cool; light - dark; cramped room - lots of space; limited alcohol selection - infinite choices of alcohol) somehow it worked. We sold 9 of our 25 bars in just over 2 hours of time, which is a good night for us.

So what is the future of 808 soap's First Friday? With the holiday season soon approaching, we definitely need to figure it out. Father & Son will likely remain a good place to sell during the rest of the month, but First Fridays there may never be the same.

Elaine and I at our display at Father & Son

Nephew!!!

Nate holding Simon

The big news around here is that my new nephew - Simon Delucia Smith - was born Monday morning, an entire month early! The good news is that his weight was fine and he was overall healthy; but they have kept him in the hospital this past week because of small issues that have cropped up. They are just being very precautious and hopefully he will be home soon!

Mom and I are trying to figure out when and the best way (fly or drive) to get up there and see him. Mom has continued to recover well from her hip replacement, but she still can't walk terribly long distances. So we will see. But we are both very anxious to get up there!

I had a really great visit up to the mountains for work this week. Four of us from our Durham office went up there and were shown around to some of our project sites in Hickory Nut Gorge (including Bat Cave - we felt the blow holes but couldn't actually go up to the entrance of the cave) and the Greater Roan Highlands (which was a trip up the marvelously beautiful Big Yellow Mountain.) We had great weather both days.

View from the top of Big Yellow

Those were the incredibly awesome extremely cool highlights from the week.

In less exciting news, my PT guy this week told me that he has done all he can do for me, and that it is time for me to see a back specialist (aka back surgeon) to get a full work-up, including an MRI. We were all (chiro, PT, GP, and I) hoping that it wouldn't come to this, that my issue would be able to be resolved with the combo of chiro, PT, and stretching/exercising I've been doing.

It's kind of funny to me because things would have never escalated to this point if it weren't for me getting a flare up a couple of weeks ago. (Pulled something in my back coughing.) I had been getting better, and I would have continued to get better and then go on my way; then at some point I would have gotten another flare up and had to start the whole process over again. So it is better that it happened now.

The years I've been dealing with this, the flare ups come and, ultimately, go. Last time I started PT, I went on vacation and had a course of IVs and by the end of that my leg was fine again. But this time is worse, I'm not sure why. And it has stumped the therapists. So stay tuned for the next chapter.

And as if I really needed something else to deal with, my skin has flared up with a strange rash. I'm not sure what caused it, but it is driving me sort of nuts. I am definitely thinking that if it isn't getting better soon I will need to see the doc or a derm doctor.

Lastly, here is a picture of me at UNC doing my first dose in a study for inhaled levofloxacin on Thursday. You all know how I am into documenting everything. :)