My Two Favorite Dorks

My Two Favorite Dorks

Sunday, October 30, 2011

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.

Sunday, October 23, 2011

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!

Saturday, September 17, 2011

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

Saturday, September 10, 2011

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

Monday, September 5, 2011

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

Sunday, August 28, 2011

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. :)


Sunday, August 21, 2011

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!

Saturday, August 13, 2011

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.

Saturday, August 6, 2011

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.

Sunday, July 10, 2011

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 :)

Saturday, July 2, 2011

Home Stretch

Mom with Dr. Comstock - er, Dr. Clooney - at her appointment this week

I would be lying if I said I haven't been really down and missing Todd the last week. I am ready for him to be home. I feel so disconnected from him having not seen him for two weeks and only talking briefly on the phone every other day or so.

At first I was engrossed in making the best of "the single life" - and, truthfully, I do fine by myself. I enjoy alone time, it's nice to not have to plan for or think about other people... but it does get lonely.

I was also not looking forward to this loooong weekend during which most people will be out of town or are doing fun stuff and I have no plans. I do, however, have one very fun house project planned: painting my office purple! It's going to be a lot of work but I have three days to do it. If I finish the walls I also have two bookshelves I want to paint. Stay tuned.

Me update: leg is doing about the same, which is to say continuing to get better. Had a (painful!) massage this week and it helped loosen things up and I subsequently had my best adjustment yet afterward.

The run-down feeling from last weekend fortunately didn't escalate to anything. yay!

Had a dental cleaning this week and I'm going to need my first crown. boo! I think the cause is actually the way that I hold my nebulizer cup in my teeth - go figure.

I was really dreading my pulmonary appointment on Thursday because I haven't been able to exercise like I want with my sciatica. I kind of got let off the hook, though. I did my PFTs and then my doctor had to run somewhere for some kind of emergency, so we agreed to talk on the phone in an hour or so.

The basic story with my lungs right now is that they are fine (FEV1 46%, up from 43% last time, which was down from 49% previously.) Not awesome, but the numbers are ok at least. (I exercised right before and I really think that made a difference because I checked them the night before at home and they were only so-so.)

I have been coming down sloooowly off of a Prednisone taper since my last appointment three months ago and I haven't been able to get lower than 7.5 mg/day. I have gotten down to 5 before when I was feeling good - which is a daily amount I am comfortable with. (Let's just say my mom's hip-replacement surgery has inspired me to really try to take care of my bones...I already have osteopenia and I'm only 32!)

I just don't understand why my allergies/asthma could continue to be an issue with all of the stuff I am on for it! Just to review:
  • Advair 500/50
  • Singluar
  • Allegra
  • Prednisone
  • Allergy shots
  • Xolair shots
I seriously feel like we are throwing everything at it and it's still not great, which is very frustrating. We talked about a few things to try: upping my Prednisone temporarily, having me do a bronco-dilator before my treatments, and, possibly, trying an inhaled medication for emphysema that is being used for some CF patients. (Spiriva.) I'm going to try to get some samples next time I'm in clinic. Dr. C says he has another patient very similar to me that has done well on it. Leave no stone unturned...

We also talked about my continuing to be on coumadin... ugh. He thinks I should go off of it and is going to see if the hematology folks can get me in any sooner than the end of August. He said that I am a unique situation in the clinic, that there aren't really other patients they've had in this situation. That seems crazy to me because a lot of CF patients get ports and some of them must get clots. But the majority of clots they see are with picc lines, which are removed, so they don't continue to have the foreign body in them. So it is a whole different ballgame.

And lastly, I may participate in a trial for a new inhaled antibiotic for CF: levofloxacin - it is in the same family as Cipro. Very cool that we may soon have another inhaled antibiotic for CF!

My mom continues to do well although she's been a little down since getting home. I'm not sure why, I think she is just processing all that has happened - it's a lot! The picture above is from mom's appointment this week, her 3-week follow up, which went very well. Her doctor is not only awesome with exquisite bedside manner, but also very handsome - so we asked to take his picture. :)

Saturday, June 25, 2011

Lots of good news

My dad and I at my commitment ceremony, May 2009

The big news around here is that my father, who has emphysema/COPD, was approved for a single lung transplant this week! He made it through all the tests and appointments and was given the green light by the committee. I can't tell you how happy we all are at the prospect of having dad be able to do all the things he hasn't been able to.

My mom continues to make great progress from her hip replacement surgery 2.5 weeks ago. She is going to be released from the rehab facility on Monday. She is going to have PT people come to her house during the week for a while still. And, while she will still need help with some things she should be able to get around relatively well. And she will be home!!

My leg/back (sciatica) has really improved in the last couple of weeks. The numbness is finally gone from my foot. My chiropractic adjustments have gotten easier - as he said they would if I did what he said and was patient - and my leg is a lot less painful. Unfortunately, the healing process is not super close to being over because my back was so messed up even before the sciatica, so there is a lot of ground to make up. I was approved to start PT this week, which is another positive step, and should help me to improve even more, and sustain the changes I've made.

Coumadin update: met with my coumadin doc last week and we decided that he is going to refer me to a hematologist. I am happy with this decision. It does mean that I will stay on the coumadin until then, which will be about a month or so. But we needed another perspective in order to make the decision of staying on coumadin for 3 or 6 months.

I have made a lot of positive changes in my life in the past week. The biggest is that I quit drinking soda. It has been way harder than I thought, because even before when I would cut out Diet Coke (which I think is probably the worst of the sodas that I drank), I would still drink stuff like Sprite Zero, Diet 7-up, Fresca, Diet Sunkist. Oh god, I was a total soda junkie.

The reason for this change is that diet stuff (in particular artificial sweetener and caffeine) is not good for you. I wanted to "detox" from artificial stuff (sweetener) and soda is the biggest culprit for me.

Also, Diet drinks are particularly bad for me because caffeine deteriorates your bones (I already have enough help with that having CF and being on steroids - double whammy) and dehydrates you. So I have been drinking a lot more water, which is another thing I've been wanting to do for a while. Pretty much juice, water, coffee, tea, and beer...the last three in moderate amounts.

Next to health there are the environmental reasons. Not wanting to have Diet Coke at the house, I would often stop and buy one after work. Drinks in plastic bottles really aren't good for the environment. Even if you recycle them, they are still a petroleum product. And the smallest reason was money - while cases of soda in cans are relatively inexpensive, those trips to the convenience store paying $1.50/drink are not.

Enough about soda.

Todd has been in Montana for a little over a week. He is having a great time. Lots of fishing. Seeing a lot of cool wildlife (he saw a moose a few days ago!) And getting to hang out with our little nephew. I am jealous of all these things.

Here at the house, Todd being gone has put me into full "project mode." I have straightened up, cleaned up (here as well as at work and some at my mom's house with the help of her awesome neighbor) - made 3-4 trips to the thrift store in the last week. My friend Jeff is power washing our deck. After that, I hope he'll do the house, and then maybe clean the outside of the windows. We are also gearing up for painting my office which I am very excited about (purple!!)

However, I fear that I may have pushed myself too far even thought I was trying to be conscious of my limitations and energy, and I hope that it is not too late - meaning I hope this doesn't turn into a CF-exacerbation requiring IV antibiotics. Thursday afternoon and evening I was very tired, even after a nap, and though I went to bed early that night, I woke up on Friday feeling pretty terrible. What I call my CF-I-did-too-much-and-stressed out-my-body-yuk. My whole body was sore, my skin actually, almost flu-like, and I was very tired. And my lungs were hurting (strange, I know) and suddenly more congested than usual. Went into work late, napped after work, and went to bed early again in an attempt to get back on track. So far I am feeling better today, but I still plan to take it easy this weekend.

Saturday, June 11, 2011

What a week - whew!

Front of Little Duke Hospital

My mom's hip replacement went really well this past week! As in, so far there no complications with the surgery, her pain seems relatively well controlled, and she is making slow and steady progress every day.

The hospital her operation was at is very nice, Duke Raleigh hospital - Little Duke I will call it. They have an entire floor of all orthopedic patients, everyone is competent and friendly. It's a pretty plush place for a hospital.

They decided to release my mom to a rehab facility on day 3 after her surgery. I was never quite sure what went into that decision. In retrospect, we probably would have pushed to have her stay at Duke for another couple of days and then maybe she could have gone home or at least spent less time in the rehab facility.

She was transferred to the rehab facility yesterday. The place is basically a nicer than usual nursing home, not what we were expecting. (The case manager had told my mom it was "the best place" with this and that and the other...I'd hate to see the other places.) They didn't have a phone for her, a walker, the right kind of bed, her pain med lapsed several hours when she first arrived. Needless to say, it was a bit of a stressful day for her.

Anyway, this is my blog, but I thought at least some of you would be interested in hearing about my mom's surgery. There is obviously a lot of other details, but that is the overview. She seems great for having had major surgery four days ago! Which isn't to say the recovery will be easy.

What else... we had a house guest this week, Todd's awesome cousin. We went to see a concert Wednesday night downtown. The band was Mumford & Sons - I love their CD but the concert was just ok. In part because of the sweltering heat (over 90 degrees after the sun set!)

My leg is making a small amount of progress in the right direction. I was given some stretches to do each night and we hope that will keep my back open between adjustments and speed things along a bit. I can't WAIT to be cleared for more exercise. As it is right now, I've basically given up doing much of anything. Which is sad. I see my pulmonary doctor soon and this is not the ideal build-up for trying for awesome pfts, but whatever.

Lastly, I think sort of by default, my docs and I have decided to keep me on the coumadin for another three months. Ahhh...summer. Summer and blood clots.

Sunday, June 5, 2011

Friends are the greatest

My friends Jacqueline and Brian and me, circa 2003

This has been a week of catching up with friends. Wednesday night, I had dinner with my friends Jacqueline and Amy. I hadn't sat down with Jacqueline in probably three years so it was really nice. Thursday, I had my friend Jeff over for dinner. He is always good company. And yesterday, I went out with two of my best female friends (and my two soap partners) Elaine and Maura. These kinds of days are so good for the spirit.

I spent a good bit of time yesterday going shopping for and helping my mom to prepare for her upcoming hip-replacement surgery on Tuesday. I think we both know what a huge thing we have ahead of us, but we are trying to roll with it as much as possible. My mom has gotten to the point where she is in a good bit of pain just walking around the house, so it will definitely be a big change for her to be more mobile again. Lunch out this week and a short shopping trip wore her completely out!

Todd's dad is coming for his second chemo treatment on Monday, just coming to Raleigh for the day. I hope that he continues to not have a difficult time with side effects. He and Todd are leaving for Montana in two weeks. Sadly, I don't think I'm going to be able to join them for part of it. We have had so many expenses this past month, and tickets out there are not cheap. I hate to miss it, but think the best thing for me to do is stay here.

My leg is doing about the same...not very good...although it did get a teeny bit better this week. I managed to get some lidoderm pain patches, but I'm not sure how much good they are doing (yet?) My turtle-paced progress continues to frustrate the hell out of me. And I am now gaining weight from my lessened schedule of exercising and the recent stresses which have made over-consumption sort-of inevitable.

Lastly, we have not for sure decided whether or not this week will be my last week on coumadin or not, but I have a feeling I am going to end up taking it for an additional three months. I am disappointed, but it is not the end of the world.

Tuesday, May 31, 2011

Sinking in

Roger blows out birthday candles with help from the little ones

Todd and I were back at Holden Beach for the long weekend (which also coincides with his father's birthday!) This trip was much more enjoyable than the last one. Roger has been back at the beach for over a week and is doing really well - seems back to his baseline not having too much pain or side effects from the chemo. He is, however, starting to lose a bit of his hair.

Birthdays and holidays have an added weight when family members have health issues. It was really great that Roger got to spend his birthday with three of his four sisters, Todd and I, and other members of his extended family. Roger seems to fit in at the beach like he's lived there forever.

For me, I don't really think it was the birthday that sent me into a phase of melancholy. It was, honestly, seeing how our dog Doc follows Roger around everywhere. Even if the other three dogs are hanging out together, Doc will be with Roger, always. It made me think about how much Doc is going to miss Roger when he is gone...how much we all will miss him...how much of a void there will be. I truly hope that he has several more good years ahead of him, but when someone is starting chemotherapy and we don't know the prognosis, it's unavoidable to think about sometimes.

I spent a lot of the weekend recovering from my extremely busy week, lots of appointments and an out-of-town work retreat left me zapped. But I also think that I was a bit depressed now that things are sinking in. When Roger and Brad were here a couple of weeks ago, I was just in survival mode - we would do anything and everything to make him comfortable and help him to feel better. And there wasn't room for the emotions that go along with that: sadness, uncertainty, helplessness. So now I am processing some of that.

Part of Roger's collection of sea shells

Also, in the spirit of enjoying the moments of Roger's health and feeling good, I have been tempted to see if there was a way I could get out to Montana with he and Todd and Brad in a few weeks. And I want to see Sawyer, our little nephew, as much as possible, too.

Finally, I will update you on my leg. I suspect that a good evening walk on the beach this past weekend was enough to set me back about 3 or 4 weeks. I am more than frustrated. I had been on a really good recovery course at the end of last week, although I was having a bit of pain and tightness crop up - even a bit ahead of schedule, my chiro said - and now I have regressed. He says to not get frustrated, but how can I not? My leg is really bothering me. My glut and back of my leg are really tight and painful. I am not limping anymore, but bending down or doing certain things where I twist or lean are really painful.

The sciatic nerve - I have an issue with my L5 vertebrae (labeled) pressing on it

Someone commented on my last blog that they hadn't heard about my leg. Frankly, I have become so tired of things going wrong with my body that I have tried to keep it to myself unless someone asks and is really interested. Anyway, for those who want to know: this issue first started with what I thought was hamstring tightness over a year ago. It came and went, but mostly got better until I started biking a lot this spring. I must have set something off in my back. Back - glut - leg - they are all connected.

In any case, I have sciatica in my right leg - the main manifestation was a partially numb foot, which has improved since my treatment started - thankfully not the terrible pain some people have. My primary care doctor recommended an excellent chiropractor, who I have been seeing twice a week for the last 3-4 weeks; eventually I will start PT as well, once things are not so "locked up." I am icing it 2-4 times per day, and, hardest for me, I've had to curtail my exercise to only elliptical, stationary bike, easy stretching (no yoga), and short walks. Humph.

And to pile on one more thing, my coumadin doc is now being wishy-washy about whether or not I can go off the coumadin in three months (coming up next week!) or whether I should continue on three more months. I am bummed about this as I am so ready for some Advil to help my leg (not allowed on coumadin) and to not have to be so mindful about the amount of alcohol I consume.

I wish there was more good stuff to report! But unfortunately, it's just this way right now. Also on the horizon is my mom's hip-replacement surgery next week. I am the only family member who lives here, so I imagine it will be a bit of work for me. How much isn't really clear yet.

Wish me luck with all of this!

Sunday, May 22, 2011

Day by Day

Me and my Sam

What could have been a very difficult and stressful week ended up not too badly in the end. Todd's dad has been with us since last weekend. He had to start on chemotherapy for his prostate cancer that has metastasized to his bones. Fortunately, he tolerated his first dose very well and his pain is under much better control than it was last weekend.

Todd's brother Brad was also here for a good part of the week but has since returned to the mountains and will soon be on his way out to Montana for the summer. I enjoy having Roger and Brad here. We all get along well and they are easy house guests.

Guess who thought the new guest bed was especially for her? Miss Squeek!

This has also given us the opportunity to furnish our much talked-about guest room (aka Todd's office). I wish we had more space! But we are making do well with what we have for now. We got a really great twin bed and all the accouterments for a comfy stay.

As for me, my problems seem really minor right now but since this is my blog I will say that my leg is finally doing a tiny bit better. I think the numbness has improved in the last day. My doctor told me to be patient; my chiropractor told me to be patient; and my inner yogi told me to be patient. But it wasn't until today that things seemed at all better. I have modified my exercise and tried to be very mindful of anything that was uncomfortable. I hope this is a sign of good things to come.

Doc is handsome as ever. :)

Probably the most exciting thing that happened this week was getting the dogs groomed for the first time. Oh my gosh they look so incredibly cute, adorable and handsome!! We wanted our Sam to be cooler for the summer, and I thought that if I didn't take Doc too, he would look like a raggamuffin. They both look so so so good.

There is probably more to tell, but I can't remember right now. Life is intense; life is awesome; life is ever-changing. Happy to be here for it. Glad you joined me for the ride.

Saturday, May 14, 2011

Raleigh - Holden - Raleigh

Doc and Sam laid out in the back of the Subaru coming home from Holden Beach (they were nice enough to share part of the back seat with me, too)

Me: went to the doctor on Monday about my leg pain - she prescribed me muscle relaxers, sent me to a really great chiropractor, and referred me for PT. I am glad because I finally feel like I am on a path to fixing this problem so that it won't keep cropping up. But I am also frustrated because I have been exercising a lot and the chiropractor told me to lay off exercising (and yoga!) for a week or two. Patience is not my best quality.

When I last wrote, I thought that the virus I caught weeks ago had settled into my sinuses. I decided to call my doctor and start on an antibiotic sinus rinse, which has worked wonders before. This turned into a week-long battle between the nurses at my doctor's office, my regular pharmacy, the compounding pharmacy that I newly elected, and my insurance company. When it was all said and done, I paid a mere $15 for the prescription and - this is the kicker - my sinus infection had basically cleared up on its own. As of now, my lungs and sinuses are feeling almost back to normal, which is great. Couldn't have done it without exercise!

Now to the real drama of the week. Todd's dad switched to a new hormone therapy for his cancer recently. It disagreed with him pretty badly, so they gave him some meds to treat those symptoms but then eventually took him off of the original treatment. Problem was, he started to get pretty out of it, really badly confused about things, and just wasn't himself, so we were all concerned.

Todd and I drove down to the beach where his dad is staying last night, thinking we would stick around and help him out, keep an eye on him for the weekend. But things were concerning enough that we turned around today and brought him back to the ER at Rex hospital in Raleigh, where he has been getting his cancer treatments. I am glad we did that, because they were able to rule out the most serious things like stroke, heart attack, dehydration, low oxygen saturation. But unfortunately, we still do not know the cause of his confusion.

So here it is Saturday night and I'm totally exhausted. I feel bad even saying that because I know that Todd and Roger must be ten times more tired than me. Family health drama can really take it out of you. But I tell you what: there is no place I would rather be when something like this is happening than with them. I hope that Roger is feeling better soon.

Sunday, May 8, 2011

Not great, not terrible - somewhere in between


It is hard to describe how the week has been without sounding complain-ey, which is about my least favorite thing in the world. I will try to be brief on that stuff. But let's start with the good news!

808 Soap had a really successful First Friday. Several of our friends came out, and we had a really good time hanging out with everyone at Father & Son. We are doing a fundraiser for the Cystic Dreams Fund (founded in memory of my good friend Paul Mooney) giving 20% of our sales this month.

We also had a Kentucky Derby/Poker Tournament party yesterday that was a lot of fun. My horse was ahead until the very end! Such a tease. Really, we know next to nothing about horse racing but it is fun to get into it one day a year. Todd ended up winning poker! And I came in 5th place out of 20 people.

Also, had some really nice bike rides this week, continuing to enjoy the spring weather. On Monday, we rode to J. Betski's, a Polish and German restaurant not far from our house, and enjoyed an array of kielbasa, bratworst, pierogies and a strudel for dessert. It was good. :)

In less exciting news, my leg has continued to give me problems. I have been limping around now for over two weeks. I don't even notice it anymore, which is kind of sad. I was too busy to make it the chiropractor this week, but I was beginning to think I wasn't going to solve the problem there, anyway. I think this is an issue with my sciatic nerve, and I have an appointment with my primary care doctor tomorrow to start getting to the bottom of this. Biking or doing my elliptical machine don't seem to bother it, but walking a lot will irritate it. Fortunately it's not painful most of the time, for which I am thankful.

Also, the cold that I've been messing around with recently dropped into my chest sort of suddenly and I ended up taking Tuesday off work just to sleep all day. I did feel better after that. By about Friday I began to realize things might actually be settling into my sinuses, and I called my ENT to get on the antibiotic rinse we talked about. He was in surgery all day, and then when something did get called in, there was a problem at the pharmacy, and then my insurance didn't want to pay for it (that is very unusual.) So it will be Tuesday at the soonest before I can get on that.

I have mentioned here before about my father's respiratory problems and his pursuit of a lung transplant. He is now almost through with the evaluation process, and then his case goes to a committee to decide if he is eligible or not. Things are looking pretty good at this point. It is exciting, and also scary.

What I haven't mentioned is that my mom is also having some health issues right now. She has been off work on disability for the past couple of months not able to walk around easily. After this and that it was determined that she will need a hip replacement surgery. I hate that she has to make a decision like this, but I also believe that it can help her not only to be in less pain but also to get around more easily - she needs especially to be able to go see her new grandson when he is born in September (yay!). I'm also hoping that it will help get her into a better routine with being more active and being able to enjoy (hopefully soon!) her retirement.

Todd's dad is also having to deal with some progression in his cancer. But I think they've figured out another type of hormone treatment that might help him - after that they would have to try chemo. In the meantime, he and Todd are planning a trip out to Montana in June for two weeks. We hope the new hormone treatment will help, and that he can enjoy another good stretch of health.

So yes, I have a lot going on both with myself and my parents right now. As for me, I'm not really sure where I'm at. I am certainly not out of the clear as far as needing IVs. I have an eye to next weekend's camping trip, and I really want to be able to go - of course, only if I am feeling well. Maybe treating my sinuses will calm down my lungs. My lungs aren't terrible so I have some wiggle room.

My plan for the week is to get on the antibiotic sinus rinse and continue to push myself to exercise as long as I have the energy. And just take it day by day.

Monday, May 2, 2011

A special day


Today is a special day. I have been thinking all day about the best way to capture it, to express my happiness and gratitude of being committed to Todd for two years.

I am thankful for Todd every single day... For his support, encouragement, ability to set me straight when I am feeling lost, for his willingness to help and uncanny ability to know when I don't want help, for his intelligence and meaningful insights on the world, for my favorite person to sit down and have a beer with, or watch a movie with, to go for a bike ride with, to have silly imaginary conversations between our pets with...I love you lots, T! And I am lucky to have you. Here is to many more years.

Sunday, May 1, 2011

Good, active, yet gimpy week


I am officially off the lovenox shots since Monday and I have to say...it is a little anti-climactic considering how much I was dying to be off them the past six weeks. Nonetheless, one week of no pokey is definitely a good thing.

The du jour happening for the week has been the issue with my leg that I spoke about in my last blog. I was able to get things loosened up but the pain and stiffness in my leg and glutes has continued. Two visits to the chiropractor later, I am able to walk almost normally and my muscles have loosened up to the point where at least I feel I can stretch them productively on my own, which is good. I'm hoping for a massage this week to continue loosening things up. The muscle twitching I was having has stopped, but - somewhat alarmingly - my heel and part of my foot are still partially numb. I am keeping a close eye on that.

Anyway, the other fun thing from this week is that I ended up catching Todd's cold. Fortunately, it has not really slowed me down at all, seems to be affecting me mildly. Which is really awesome. I am still feeling really good overall.

It has been so nice out this week - 70s and low 80s, sunny - that we went for a couple of really good bike rides downtown. It is so fun riding downtown - makes me feel so urban. :) Friday night, we rode downtown to dinner, then to a show; Saturday we sat outside and had lunch, did some much-needed yard work, then met friends out for a birthday celebration. Today, I am going to go back to yoga (took the week off because of my leg), wrap up soap in preparation for First Friday, and then grill out. I'd say that is a very good weekend!

Saturday, April 23, 2011

Unexpected weekend at home

Diosa was being especially cute the other day and several photographs were taken

Since I am stuck this afternoon sitting on a heating pad, I might as well write my weekly blog entry. I am sitting on a heating pad in an attempt to get my glutial and hamstring muscles to ease up a bit. I have had issues with my right hamstring for about a year (not continuously.) But I woke up today and it is much worse than I ever remember it being. I am hoping that my muscle relaxer kicks in soon. More on this in a minute.

When I last wrote, I was optimistic that Sunday night would be my last lovenox shot. My coumadin clinic appointment on Monday did indeed bring good news: while not yet in therapeutic range, my INR was going up, and since I was out of the six week post-clot danger zone, my doctor said I could go ahead and stop the shots. I told him before we decided that, I needed to tell him something: I had been having wrist pains exactly like when my clot was diagnosed on Thursday and Friday. It wasn't as bad or for as long, but it was definitely consistent and had the same pattern as six weeks earlier.

The doctor left it up to me and we decided on the cautious route of doing shots for another week until my coumadin level is therapeutic. Incidentally, he wasn't too alarmed about the pain. (Here I was thinking I would be dropping a big bomb telling him...that it could mean my clot had reformed or in some way worsened.) He said it's common to have residual pain or swelling even after treatment. I still didn't think it was a great sign, and I asked if this meant there would not be any way I would be on this treatment for three months. He said three months was still completely feasible and that we'd just have to see.

Anyway, the good news is that the shots have not been as painful or left as bad of bruises for whatever reason this week. So yay for that. And I have not had any more bleeding incidents, so hopefully that one was just a fluke.

I lied: there is more good news. I have been feeling really good this past week, lung wise and mentally, too. I went for three or four bike rides and went to yoga twice. Also walked the dogs a couple of times. I have been tapering my prednisone down from the 20 mg upped dosing that I was on for a month or so to try to get my pfts up. It has made me a little short of breath, and, the frustrating thing is, my pfts never really went up. But I feel great! So I'm thinking I will have to taper slowly - my lungs may just be suffering some seasonal strain from allergens even though I'm not having typical allergy symptoms - and possibly stay at an increased dose for a while longer.

So yes, I am very happy having had a normal and active week. Plus, I have been getting a lot of compliments lately about how I look and my new haircut, which is nice. :)

Now I am feeling a little restless... Todd and I were supposed to go to the beach this weekend but he came down with a nasty cold and was not feeling up to it. Then I woke up today with this super-tight muscle issue. I'm wondering if it is because of all the activity I've been doing? I'm not sure if there is evidence for that except for the timing of an active week and, now, a very tight muscle. Also, I thought the initial flare-up a few weeks ago was because of having gotten out of my exercise and stretching routine for so long. Who knows.

Supporting local craft makers at the Handmade Market!

But I decided it wasn't going to ruin my day, so my soap partner Elaine and our silent partner Maura and I went to check out the Handmade Market downtown this afternoon. It was really great to see all the things there - jewelry, t-shirts, stuffed animals, metal work, glassware, pottery, body products...of course we were especially interested in the soap! We were also getting ideas for how to set up our own stuff if we do this event, or an event like this, in the future.

Sunday, April 17, 2011

Mother Nature is a Bitch

My inner kid wants to do some complaining about what a pain in the ass it has been dealing with this blood clot. There continue to be issues getting my coumadin levels in range and I had one bleeding incident this past week. Fortunately, it resolved itself and I am fine now - except I am left with the near constant dread that something could happen or go wrong at any moment. It's not fun.

Bruises from the lovenox (the other thing is the insertion site for my insulin pump); what you can't see are the speckles from every single shot I've had to give all around my abdomen.
My doctor: "I've seen worse."

But I am also tired of complaining about all this, so that's all I'll say about that.

Couple of things I wanted to talk about:

1. We had some CRAZY storms come through the city yesterday - crazy as in tornadoes, many trees down, lots of power outage, etc. I was actually in Durham when it happened. When I came home, at first I didn't even realize much had happened. There was some debris and small branches in the street but nothing major. Then I took a walk around the neighborhood... the streets behind us got hit really hard - a giant tree tipped over and crushed a pick-up truck; a tree fell across the road; a tree crushed a storage shed and another fell over a big power line. It was pretty crazy.

Big tree that fell over and crushed a pick-up truck about a block from our house

Fortunately, my nagging Todd to get our trees trimmed last January really paid off. We had no major limbs down in our yard, no trees, and, luckily, we did not lose power. (See my FB page for more photos from the 'hood.)

In a neighborhood a couple of miles from us, some of our friends were not so lucky: one friend had a tornado come through her back yard. Two trees fell on her house but she was okay. Another friend had trees down, a storage shed flipped over, fence destroyed and neighbors on both sides had damage to their back decks (one almost destroyed.) Everyone I know over there is without power.

2. I spent Thursday, Friday and part of Saturday attending the Full Frame documentary film festival in Durham. I LOVE documentaries. Our friend works on the committee and has generously given me or me and Todd passes for the last several years. Unfortunately, two years ago we either had our ceremony or were in Ireland; last year I went to go visit my dad after he'd gotten out of the hospital; so I hadn't been able to make good use of the pass until this year. I really experienced the festival - went to 3-4 movies on Thursday, 5 on Friday, 1 on Saturday (I was getting very tired by then.) :) There were some amazing documentaries and I am so thrilled that we have a festival like this so close to where I live.

3. After my Saturday movie, while Raleigh was getting pummeled with storms, I had a chance to meet up with a long-time online friend with CF named Melanie. I have probably known her for 6-7 years I would guess. She lives in CO but has moved to Durham for health reasons in the last year. I think we both knew that we would hit it off, and we totally did. We had a really enjoyable, relaxing time together. I look forward to seeing more of her now that we have connected.

I usually don't like to make my posts super long, but I had to tell you all that stuff! What I was originally going to write about was my "Goals for 2010" that I created last year on the sidebar of this page:

  • Paint all the rooms inside my house
  • Clean out the attic
  • Exercise or yoga 5-6 days/week
  • Simplify! Don't buy stuff I don't need
  • Be punctual
  • Check out other yoga studios around Raleigh & save for yoga teacher training
  • Start selling our soap!
You will notice the list has been replaced by a new list for the coming year. However, to reflect on these a little... I did not paint all the rooms in my house; however, I did paint our bedroom an amazing shade of blue that makes me very happy. I have a plan for our bathroom, which is the next target. I still want to paint my office purple. I am formulating a plan for the house - like what to improve/in what priority vs. do we fix up basic stuff and then someday move - but I am making progress on that as well.

After I painted the bedroom

Attic: this is something that simply must happen soon. The reason is that one of the next home improvement things I want to do is add insulation to the attic, and all our stuff will need to come down to do that. So I want it to be as organized - and paired down - as possible. I would call Todd a pack rat, but it's really just laziness..he's a lazy rat lol. But I love him. :)

Exercise: certainly this goal has waxed and waned. Suffice to say that when I am feeling well, I usually do a pretty good job with this. Right now I am staying really active, I am happy with my weight - I have not ballooned up since my last infection - and it feels great.

Simplify/Punctual: I still have room to go with simplifying, but I have been a lot more conscientious about it - and I think as a result of that I have made better purchasing decisions. My punctuality has improved a lot. I am hardly ever late for work; appointments I could still be better about.

Yoga: I did find a studio that I like - yay! But I have not attended as many classes there as I would have liked. Still need to work on finding a weekly class that fits into my ever-changing schedule. The teacher training I have decided to hold off on. It's not a commitment physically or financially that I am willing to make at this time. Plus, I just don't feel the desire like I did before. Maybe sometime.

Elaine's awesome marbled bars

Soap: Well I think you all will agree that I have knocked it out of the park on this one! Our soap selling at Father & Son has been a big success. We have been able to make a small profit which surpasses our original goal of being able to break even. We have met some great people that are part of the Raleigh art scene. Most importantly, we have remained true to our motto of "Keep it fun!" There were definite moments of feeling out the best direction for us to go in order to keep it fun for both of us. What can I say, Elaine and I are great partners and work really well together. We respect each others' wants and needs and we have been able to maintain an operation that provides us both with a much needed creative outlet.

Here's to a great 2011!

Thursday, April 7, 2011

Weekend with family

Brother Nathan, me, Todd, mom, Uncle Roger, Cousin Anne and her daughter Miranda on my back deck

In the interest of trying to blog more regularly - here I am!

Last time, I held off talking about my mom's 70th birthday weekend. A couple of months ago, I had the idea that with mom turning 70, we should do something special. That turned out to be a very successful gathering of her fairly small family that is very spread out (Florida, Pennsylvania, Virginia, Michigan).

My brother and I told my mom that we and Todd were going to take her out to a nice dinner at a surprise location. That gave me the flexibility to find a place that would fit everyone who could come. We ended up at this family-owned Italian place downtown - the food was good, the wine better, and the wait staff was top notch. We had a private room, which was cool. And boy oh boy was mom surprised! We had a really lovely evening - and weekend - with family and one of my mom's oldest friends from Michigan.

The weekend was a MUCH needed reprieve from my slugging around here.

Basically my health stuff has leveled off, although I have still not been able to get my coumadin levels to where they should be (which means I'm still doing the terrible nightly shots.) Today marks approximately the month anniversary for discovering my blood clot. Risks start to taper off increasingly after six weeks, so I am well on my way. And I FEEL good, which is always great.

But I have still been having some mental struggles. My anxiety over this situation (I hope) peaked on Sunday... I had my first real panic attack in a long time (I'm talking years.) It was scary. While I've had a lot of small incidents, I really had a hard time calming myself down from this. I was convinced there was a problem with my heart, which was racing and pounding - I even started to pack a bag for the hospital.

I think what happened was a perfect storm of being at the beginning of a Prednisone burst (can make you feel speedy, or can make your heart race), starting on a new medicine that was making me feel a bit funky, being at the end of a week during which I had experienced a lot of off-and-on anxiety, and, possibly, watching an intense hockey game. :)

Without publicly divulging too many details of my mental health, I will say that I had an appointment with my psychiatrist that week - timing of that could not have been better. And he started me on a new medicine, hopefully temporarily, to help with my funk and anxiety of late. So far so good with that, although I hated the idea of it. He also told me to not hesitate to use my Xanex, and even suggested I take one regularly before bed to help a bit with the next day.