February Update

In general, life is really really good right now. Work is going better than ever, my lung health has been excellent, I have finally gotten back to yoga! and we have been making a lot of trips up to the mountains.

On the flip side, my back/leg problem has once again become a daily pain maintenance issue for me. We have also been learning to live more frugally and I am trying to tackle what I consider to be some ongoing personal demons with a new therapist. That's it in a nutshell!

Work has been incredibly fulfilling, and very busy. I just had my mid-year review (and my 5-year anniversary, coincidentally!) and I feel more than ever now how my personal goals align with those of the departments I work for and the organization as a whole. I continue to do a lot of writing and web work (my passions) and I have a couple of projects in the works. Most importantly, I am creative, ingenuitive and able to use my web/writing talents at work and I am very appreciated by all of those around me. Oh, and we moved into a new office space which is an incredibly cool, hip environment to be working in on the American Tobacco Campus in Durham.

Pictures of the American Tobacco Campus - a renovated area of 1950s tobacco warehouses that were abandoned in the 1980s. The original buildings have all been renovated and a central courtyard area has a man-made river and a grassy area where concerts are put on during the summer. The Tobacco district is right across the street from the minor league baseball team the Durham Bulls. ATC's most famous resident (to me) is none other than Burts Bees!

The current story of my lungs has a couple of facets. I have been lucky enough to not catch any viruses lately. Because I was feeling good, I decided to start tapering my elevated dose of Prednisone a few months ago (I had been at 20 mg/day since August and my baseline is 10 mg/day.) Also, about 4-5 weeks ago I started keeping track of calories again to lose a few pounds and that has made me increase my exercising a lot (so that I can eat more than I otherwise could.) Because of my increased exercise and (an initial surprise to me) my lowering Prednisone dose, my back/leg again started giving me trouble. I guess I didn't realize how much the Prednisone had been helping my herniated disc issue.

I once thought my disc issue would get better, but I now know it is going to be something I have to live with forever.

In response to this, I am trying to do my PT exercises (or core work) every 2-3 days; icing; and I am back on a (relatively) lot of pain medicine (Alleve, Tramadol and the muscle relaxer Soma are all a part of my daily routine.) I am currently at 12.5 mg/day of Prednisone and, honestly, I don't see how I'm going to be able to get any lower than that. I might even have to go up - I will talk to my lung doctor next week when I see him about this trade-off I am experiencing.

After several months of "restorative," "yin" and "relaxing" yoga classes, I decided to try a normal yoga class in January. I was very careful and made a lot of modifications. Fortunately I have been doing yoga long enough that I can participate in a class without feeling the need to be competitive. (Yoga teachers always say "it isn't a competition - do what is best for your body!" but I don't care what anybody says, that is a hard lesson to learn.) Anyway, the regular yoga class was GREAT and I had absolutely NO adverse effects from it! I was thrilled, and since then I have been going to 1-2 classes per week. I am also starting to do a pilates class because that will give me core work (like my PT exercises) without having to do my same old exercises at home. Boring!!

Pilates, like yoga, is done on a mat. But the focus is on your core muscles, or the muscles that hold your spine in place.

On another topic, we cancelled our Europe trip that we were going to be going on with a group of friends in March. We have spent a LOT of money on dental work over the last year...we need a new fence...there are always unexpected things that come up...we need to get in a better place financially. I am happy to report that I have been very disciplined in only spending money on things that I need for the past several weeks. My tendency otherwise is not to run out and buy things just for fun, it is getting into this state of mind where I am always thinking, "what do we need right now?" or "what does the house need right now?" while I am out running errands. And then I end up thinking of things we don't necessarily need (now) or putting myself in situations where I find irresistible bargains...  So I am working on that.

I have also started seeing a new shrink. My old shrink just didn't challenge me! Also, he is close to my old office but not close at all to my new one. The new woman is in Raleigh, and sees patients on my day off, so I hope that she will work out.

Mountain house: I would be lying if I didn't say that in all the difficulty of being in and dealing with the mountain house (where Todd's dad lived, he passed away in August...) it also has been a lot of fun to clean, straighten and organize the house into a place of our own. We have been going up there about once a month. We both really like it. It is so enjoyable to be there.

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. :)

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.

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

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. :)

Figuring it out

Allergy testing

My goal for last weekend was to chill, chill, chill. And chill I did. It felt strange, but was very nice. :) Finished a book, napped, went to a movie, caught up on my trashy TV. I need to do that more often.

This week has, as usual, been go-go-go. The highlight of the week, appointment wise, was my allergy re-testing on Wednesday. We tested all 108 (a very auspicious number, no?) environmental and food allergens, and the only things I was allergic to was ragweed and...cats. Sadly. This is actually amazing, though, because when I was first tested in 2007 I was allergic to - seriously - the large majority of environmental allergens that we tested. This means that the allergy shots have been doing their job. Yay! We are going to beef up my serum for cats and ragweed and hope that will help me be able to cut back on my Prednisone dosage, which is now 10 mg per day.

My leg has continued to be bothersome and painful at times. My PT has been going along well but also feels like a bit of a crapshoot. I mean, on Saturday, after I've been going there for a month already, the therapist says to me, "I'm still trying to figure out just what's going on here." I know I have only seen her three times, but really?!? I go through 30 mins of 20-questions -"does this hurt?" "what is your pain level for this?" "if you do this, is it better or worse?" - I walk out feeling a bit better, but wondering why in the world it takes that much maneuvering just to feel a little bit better. It just doesn't seem fair. Actually, I am really frustrated and I hate it right now.

Onto merrier things: this weekend, our friend started refinishing our deck. So far, awesome! Can't wait to see the final result. Last night, Todd took me to a concert of a band he saw a bunch of times in the 90s but who hasn't played for a long time and I really enjoyed it. Today, Elaine and I made soap, working around her upstairs which has been inundated with stuff from her basement which flooded two weeks ago. It was good to make soap after so long of a break. Had some really cool ideas today. I'm lately feeling like such the 'ideas' person lately, and it is a role which I really like.

Ta-ta!

Kitty week

The cat forever to be known as "kitty"

I had a pretty interesting week. Went to a Bulls game with some co-workers on Wednesday night - it was a perfect night for a ball game. Got some pool time in with my good friend on Thursday. We used to go a lot but this is the first time we've gone this summer. And yesterday I had a friend over and we grilled out pork chops (which turned out really well, not dry!) and then played a pretty intense strategy game at which I lost badly. But it was still fun. :)

I found a kitty on Sunday! She was a very friendly black cat who was so hot (it was 100-degrees out) that she was panting. She was also bald on her hind legs and rear end and had scabs around her neck, it turned out, from being allergic to fleas. I was worried about her and ended up taking her to the emergency vet.

$330 later she had been given fluids, de-flea'ed, her respirations were down, she tested negative for all communicable diseases, and they had given her shots of antibiotics and steroids. Long story short, it ended up that her owner was on vacation and she had escaped from her house. He got home two days later and they had a happy reunion. While it seemed he might not be taking the best care of her, the flea issue was recent and he'd been trying to get it under control, and the cat supposedly had a micro-chip since she doesn't keep collars on. So it was a happy ending.

I had a good session of PT on Monday, except that my leg tightness, which is the main symptom I've experienced since this has been going on for the last two years, doesn't really seem to be getting better. However, other good things are happening and in general I feel like I am progressing well. Then on Tuesday night I was standing at the sink coughing and irritated/reinjured the problem area in my back. At first it seemed minor, but it has turned into the same thing as before - really tight, keeps feeling like I need to stretch it but that doesn't really help, painful to turn certain ways. Ugh.

I was pretty much "over it" even right after that happened. As in, I'm tired of this messing up my life. So I went ahead with my elliptical that night - that was OK but probably wasn't great for it. Thursday I swam some laps at the pool, again, seemed OK. And Friday I was back at PT for my first "acute" visit since I started going. This morning it again feels tight and irritated. So I'm going to try to take it easy this weekend.

This week's appointments: (ha! I have so many appointments, I could probably have a category like this every week!)

• Monday, PT (above)
• Tuesday a.m., endocrinologist (diabetes): went well! A1C was 7.0 which is great, means my sugars have been under good control.
• Tuesday p.m., rheumatologist (allergy doc): I have been on allergy shots for 4 years now, and the Xolair shot for 3. The goal of these is to try and reduce the amount of steriods that I am on (both inhaled, Advair, and oral, Prednisone.) I have had a good year in terms of infection, but a bad year as far as Prednisone use. I am currently on the equivalent of 10mg a day, which is more than I want to be on. (5 would be ok.) So we decided to re-allergy test me. The thought being to see what I still react to even though I'm supposedly being treated for the things I am most allergic to. We are doing that on Wednesday and I am excited to see the results.
• Thursday - ok, this one was voluntary. I went to a screening visit for a clinical trial for a new inhaled antibiotic, levofloxacin. This is a drug that has been used for a long time in oral form, Levaquin, but the inhaled form is new. This is a stage II trial to test safety. If I get into the study, which I should, I will start it (or placebo) in two weeks. I will go back then, and then every two weeks for two months - the idea being that they follow me while I am on it and for the month afterward. To get into this trial, I have gone off my current regimen of inhaled antibiotics, and that is, fortunately, going very well.
• Friday - PT (above)

No big plans for the weekend, just going to take it easy.

Great Northern Adventure

My uncle Matt, Aunt Judy, me, Nathan and JoEllen

It's about time for some catching up here on Catboogie's Dream.

Basically things are going very well. I just got back from a wonderful vacation which I will tell you all about. And mom is doing ok despite a couple of setbacks. She had to go back in for surgery on July 14 to have her incision cleaned out. There appeared to be some infection at the surface, but the doctor wanted to confirm that it hadn't spread any deeper.

The post-surgery news was great - he had seen no indication of any infection, but he sent away some cultures anyway. However, when the cultures came back a few days later, they showed some mild staph. What was supposed to be a quick stay in the hospital ended up being four days. But she recovered well and was again back home.

Things have progressed slowly although in the right direction since then. The unfortunate part is that mom developed an allergic reaction to the oral antibiotic they sent her home on, and she has been quite miserable dealing with that for the last couple of weeks.

Vacation:
I left on the 21st to drive to Cleveland. On Friday, my step-mom and I hit some of our usual second-hand spots, and then again on Saturday. We had amazing fresh fruit and corn, and went out for Thai food one night with the best coconut ice cream I've ever had (ok, you got me, the only coconut ice cream I've ever had. But it was delicious!!) Dad seemed to be doing pretty well; amazingly well despite the heat and humidity which are often treacherous for him to deal with considering his breathing problems.

This was my first time in Cleveland since my dad has been officially listed for lung transplant. I have to say, as relaxed as everyone there seems, it was a bit strange. There is that thought of 'what if' every time the phone rings. And there is a split reality in the sense that things could either go on as they are for as long as possible, or else that something will drastically and life-alteringly change - possibly at any moment. I hope the lungs come sooner rather than later.

After a couple of days, I headed to Michigan, first to visit an old friend and then onto my brother and his wife's new house in Mt. Pleasant. I have serious house envy of their turn-of-the century home, complete with gorgeous woodwork, beautiful hardwoods, plentiful working windows and lots and lots of space.

My brother's house

The next day, our uncle and aunt came up from Indiana to see the house, visit, and we had a small little baby shower during which we Skyped in dad & Mary Ann in Cleveland and mom in North Carolina.

In general, Mount Pleasant is a very cute and sleepy town. The downtown, while small, is thriving with shops, some galleries, a few restaurants, a yoga studio. It's about a 10 minute walk to downtown. There is a food co-op, a soda shop and a hardware store. Everyone was out enjoying the nice weather, but I can imagine the speed during winter is a lot slower.

I went back to Cleveland for a couple of days before returning home. I bought a beautiful cherry wood lingerie dresser that I had not been able to get out of my head since being there which *just* fit into my back seat. And then I got a crazy idea - instead of driving home Saturday, I would drive to my aunt's house in Pennsylvania, which I have been wanting to see since she moved there a couple of years ago, and then drive home from there on Sunday. The drive was very pretty, especially the last hour which was on a very windy, rolling and beautiful historic highway.

Scenery in rural Pennsylvania

It was nice seeing some more family and exploring a new place. It has been many years since I've driven on the Pennsylvania Turnpike, which my mom and I used to always take to visit family in NC and VA. The PA Turnpike is filled with 24-hour Starbucks (heaven!)

It was also nice to drive a different way home. Lord only knows how much I have driven I-77 in the last few years!

And then...I was home!!

Couple of quick updates from this week:

• My chiro said my back was doing very well and cringed when I told him I had driven almost 2,000 miles since I saw him last. He then said my back was doing especially well considering that!
• Had two more sessions of PT this week. I really like it. I am surprised how many yoga stretches are involved. The PT person reiterated how bad driving is on your back (but I was very conscientious of my posture) and gave me some special after-driving stretches to do.
• My lungs are beginning to feel a bit heavy from being off the inhaled antibiotics in preparation for a study for a new inhaled antibiotic. It isn't terrible, but it is noticeable. I now know the antibiotics do help (hard to tell when you are just on them continuously.) And it has really forced me to stay on top of my exercise, which is good.
• Had the much-anticipated hematology appointment on Thursday for the doc to weigh in on my stopping coumadin. GREAT NEWS - I AM OFF OF COUMADIN!! I am going to start on a daily low-dose aspirin, which should give me some protection from clot reformation. Overall, the appointment was great - great doctor (who, of course, my ever-awesome CF doctor had already prepped via emails back and forth). Bottom line is that he thinks my port will be fine. But if I do develop another clot, we have a plan for how to handle it. The not so good news is that the stenosis (narrowing) in my sub-clavian vein, which showed up on the ultrasound only after the clot had cleared, is scar tissue from all of the picc lines that I have had. So no more piccs or ports on the right side of my body. However, anything done on the left side should be fine. I have another whole side to mess up - yay!
• Lastly, the Cystic Dreams Fund, for which I sit on the Board, gave out our first four grants this week. I have to say I really enjoyed being a part of that process. It is great to know that we are helping to make peoples' lives a little bit easier. And I know that Paul, my friend who passed away and for whom the foundation was started, would be very very happy.
  

Purple!

The much talked about and anticipated purple office has arrived! Spent three days last weekend prepping, painting, and putting back together. I was not quite done by the time Todd and Roger got home Tuesday night: I had not anticipated my stained bookshelves needing so much time to air out before bringing them back inside. Everything looks great! And it makes me happy happy.

Newly stained bookshelves

Aside from a small backtrack with all of the moving of books and furniture last weekend, my back and leg have been doing really well. And I started PT this week! Which is both exciting and daunting. I know it is going to be a long process. Now I trade my twice-weekly chiro appts for twice weekly PT. But hopefully it will all be worth it.

So yes, Todd made it home. Roger had another chemo treatment and as far as I know has continued to tolerate it well.

My mom is getting better walking every day. I was over at her house yesterday and she is almost able to walk without a limp, which is excellent. She will be transitioning to the cane next. Yay mom!

Anyone who wants to see more home improvement pictures can check out my album on facebook. You do not need to have a facebook account to do so, and doing so will not sign you up for facebook.*


*disclaimer for my mom :)