What's Next?

I had just finished loading up my car with some stuff to take to the thrift store yesterday when a neighbor walked by with her dog and started to chat. She knows about my transplant and was asking how I was doing, if I was feeling stronger every day. I told her I was still doing rehab and, yes, getting stronger every day.

At that moment I felt something missing. What else am I doing that's worth while? What's next for myself?

Yes, I still need to take the time to do my rehab (physically, I still need to get stronger) and to make sure I'm giving my body plenty of rest. But then what? Part of me is ready to jump back into life! Although, admittedly, I'm not quite sure what that would look like right now.

The Complications aka The Trouble With Returning To Work

The problem with returning to work - even part time as I was working before - is that I would lose my federal disability. The disability that took me eight months to get approved for. Yeah. I am not taking that lightly. I got free help getting approved with a CF Foundation-sponsored lawyer the first time around but I don't know if that would be available to me again - and you need a lawyer to cut across the BS for this kind of thing.

I am allowed to work a little while still receiving federal disability, but it isn't much and it's "frowned upon" - I guess if you're disabled they want you to truly be sitting around not doing anything at all. (Well, of course with transplant it's different.)

Assuming I did not return to a paying job, I would ride out the rest of the two years left on my work long term disability (until Dec 2015) and keep my Aetna work insurance. At that point, there would be a gap I'd have to cover before the 2.5 year federal disability waiting period for Medicare would be up. So I would need to get Cobra or look for private insurance before my insurance would switch from Aetna to Medicare.

Any way you slice it, things ain't gonna be as easy insurance wise as they have been for me so far. (By the way, I received an "itemization of services" in the mail from Duke the other day. I have been saying all along that my transplant was free but I lied; out of about $555,000 of defined costs during transplant I end up owing $266. Not bad. And thank you, dog!)

Finding a Job That Fits

So what if I were to go back to work and lose my chance for Medicare after the time I would qualify for it? (In any scenario I keep my Aetna insurance until Dec. 2015.) For one I would need to find an employer who offered me insurance. This could be tricky because I do not see myself working beyond part time at this point. In addition to those reduced hours, I would need to find an employer who was understanding about me needing time off for doctor's appointments, health flare-ups, and who allowed flexibility to work from home when needed. The place also needs to be somewhere with not too many people and where I feel comfortable about people not coming in sick.

I'm not saying that would be impossible, just difficult.

The alternative is for me to find a place to volunteer on a regular basis - it would have to be a regular basis (i.e. job like) because already I can feel myself starting to go crazy not having something like that to do! Maybe I would go in a couple of days per week, possibly work from home some. Maybe even work for more than one place.

Now for the exciting part, thinking about what kind of work I would want to do!

Things I Can See Myself Doing (a bit of a brainstorm)

I'll bet this list will come as no surprise to any of you!

• Working with animals - while this is my first love, when it comes down to details it's not as neat as I wish it was. I always saw myself volunteering at Safe Haven for Cats (a really great no-kill shelter that I volunteered at long ago.) The problem with the "hands on" aspect of this is that I am not supposed to be around kitty litter. (It's one of THE big no-nos post-transplant because of a bacteria you can pick up.) Each kitty cage contains a litter box at Safe Haven, and, similarly, other places I assume. Also, I need to be super careful about cat scratches, so any strange cats could be iffy. So what about doing some kind of volunteer office work? Writing or website help? That would definitely be possible but, let's face it, it's far less fun when you can't be around the furry ones!
• Pet sitting - this is something I could do (cash under the table) for friends at first and maybe more as word-of-mouth spread. Again, no scooping kitty boxes so that would be limiting. Work would be sporadic and, probably the biggest problem, we want to start doing stuff on weekends and we like to travel (and want to travel as much as possible this year!)...all the times people would need me. 
• I could be more like a dog walker - someone who would check in on pets during the day, maybe even walk them. That would be good exercise! And checking in on kitties requires no kitty box scooping.
  
  
  
  
  
• Volunteering for an environmental organization - ah, my second love. I can see myself volunteering for an environmental organization. Again, I would love to offer my writing, website writing and design skills, organizing or any other help that didn't involve direct solicitation or too much other front-line work to either The Nature Conservancy or another local group. 
• Volunteering for another good, local organization whose cause I agree with. This gets more outside my comfort zone. Of course I love places like the women's shelter, but I'm not sure I would feel comfortable volunteering there.
• Becoming a Big Sister - this is something I've always thought about doing but never had the time to commit. I think it would be awesome to be a positive influence on a young person! I could maybe even stretch my brain and be able to help some with school work. :) The problem with this kind of work - any kind of work with kids - is that kids are germ factories! If they aren't sick they could be carrying something from one of their school mates. I can't avoid kids forever, but maybe this is something better left for after I'm not quite so immune compromised. 
• Nanny - Many of you know I nannied for years during college and for a couple of years afterward. I liked the work because of the families I worked for. This is something I could do again (again, for cash) but it would have to be the right situation. Again, there is the germ issue - I would not be able to work if the kid was sick. Ideally it would be a kid who was not also in daycare or school yet so not exposed to so many other germies.
  
  
  
• Lung Transplant Foundation/Donate Life NC - I've already reached out to Donate Life NC. They expressed interest in sharing my story, and I would like to offer them my help possibly as well. A lot of other post-transplant folks also become involved with the Lung Transplant Foundation, another great organization. I joke they are the post-transplant version of the CF Foundation because so many transplanted cystics raise money for them.
• I just looked on the City's website for volunteer opportunities and found a few other cool possibilities: Parks & Rec volunteer program, Recycling Block Leader (this has my name all over it!), and the Greenway Volunteer Program. More possibilities!

Photos: Universe of Possibilities, doklab.nl; Businessman, shutterstock.com; Work/Life Balance sign, lifeaftermaternityleave.com; Woman with Kitten Painting, tennysonlee.com; Dog Walker, thumbtack.com; Donate Life/Done Vida, donatelife.net.

The New Normal

There are many steps in recovering from a major surgery: the number of things you are hooked up to decreases, you get released from the hospital, slowly get strength back that was lost while sitting around in a hospital bed.

Also, in my case, there's been the small steps toward being able to eat normally again (still working on that), getting various tubes/stitches/staples removed (everything is gone except for my feeding tube) and completing 23 grueling sessions of pulmonary rehab in order to graduate - which I did the week before Christmas - yay!

Along the way, little slices of normal life start to insert themselves into the medical routine and they are oh so very welcome. Going out to dinner or a movie? Awesome! Putting up the Christmas tree? Hell yeah! A trip out shopping instead of buying on Amazon? What fun! (All of course done with my mask discretely in my pocket book ready to be deployed if need be.)

Are We There Yet?

Recently I have had some people ask me if things were getting back to normal. The answer to that is not straight forward. 'Normal' to me before surgery was days of fatigue, doing treatments and dragging myself to rehab. Rewind to a little over a year ago before I had to stop working and life consisted of mornings of drinking coffee and reading the paper while doing my therapy, going into work, coming home to do therapy and exercise, cooking dinner, watching some TV with Todd, doing my final treatment and going to bed. 

So what will life look like with no treatments and only having to remember my medication times throughout the day? (I am still getting used to that.) The answer is I have no idea and the possibilities are incredibly exciting to me!!

I would like to go back to mornings of reading the paper and drinking coffee before doing some kind of work (what that will look like, whether actually going into an office as a paid job, doing some freelance writing, volunteering somewhere or doing something else at home.)

Exercise will continue to be a big part of my life - I want to get back to being able to go on bike rides with Todd and go to yoga classes!! I might even finally be able to complete yoga teacher training like I had wanted to (not to teach but just to get deeper into the practice.)

I want to have an active social life again, going out with friends - I miss that! (Although I will have to continue to adapt to a basically alcohol-free lifestyle, regrettably.) I want to be able to go on trips out of town on the weekend at a moment's notice. I miss our mountain house so much I can't even tell you! And I miss going down to Todd's aunt's beach house at Holden Beach - it is so beautiful down there.

Speaking of Getting Away

Speaking of getting away, before any of that happens I want to plan a couple of trips. I want to go to Atlanta for a weekend to see my good friend who's moved down there. And I want to go to Cleveland to see my dad/step-mom and family - and hopefully my brother can also drive down from Michigan so I can see his family too (nephew Simon!!)

Todd and I are also starting to plan summer vacations. We have a friend's wedding in Vegas in April. We want to go to Montana sometime. And we are starting to think longer out (next year) about a trip to Belize or some place like that on one of Todd's brother's fishing trips. (That would require a lot of planning and preparation from an infectious disease standpoint but the docs have said that with enough advanced time it should be fine.) We also have good friends in Ireland that we would love to visit. So much to do!

So what am I waiting for? That's easy - two things: I'm waiting for my rejection (discovered during my bronch a month ago and subsequently treated with a large blast of steroids) to clear and for my Nissen stomach wrap surgery to be done. For the rejection, I had a follow-up bronch on Monday and I am awaiting the results. If I remember I will update this with them. If I am clear, plans will start being made! [Update: I am still showing mild rejection, although less than last time - this makes sense because my Prograf (my main anti-rejection medication) levels have still been low. My treatment will again be I the steroid treatment. This is also good, in my opinion, because it means they didn't think an escalated type of treatment was necessary.]

For the Nissen, I am supposed to get a consult with the surgeon soon and I am hoping that surgery will follow fairly quickly. The recovery from the Nissen seems to vary a lot between patients. Although the surgery is done laparoscopically, I am hoping that the pain will be lessened by the fact that my chest is still numb from the belly button up to my collar bone.

Anyway, that's the deal with me right now. I am awaiting the endless possibilities of what my new normal could be.

Oh, and I almost forgot: Happy New Year y'all!

 

Photo Credit: Egg @ doctor, www.andertoons.com; Amazon boxes, www.techlicious.com; Yoga hands, www.yogavibetenerife.com; Belize, www.belizethisway.com.

Full-time Patient

A few of my online CF friends have "full time patient" or "works at CF" listed as their careers on facebook. I used to kind of snicker when I saw that. Like, seriously, I've been the patient for years and I still manage to have a very full and productive life that does not revolve around CF - spare me the drama.

It's the same for some healthy people who may see "full time mom" listed as a career and think, seriously? That's all that defines you now? That is your life work?

But now I understand. Because CF really and truly has become my full time job. It takes me a minimum of 2 hours to get out of the house to do anything in the morning - and I'm often late to everything these days. I am trying to get a fourth vest treatment in every day. On the days I have pulmonary rehab (Tuesday and Thursday every week), it is amazing if I can get anything else done that day...doubly amazing if I have the energy to BOTH go to the grocery store and cook dinner. I used to run "errands" but now it's more like "errand."

But my home is still my castle. And even though things may pile up for a couple of days, I still manage to keep things looking decent, especially for visitors. Really, I have to or I would go insane.

And I have so many appointments...  I try to give myself Mondays off, a day to catch up on phone calls and house work. For example (and this past week was pretty light) Wednesday, had I not started on IVs, I was going to see my shrink and acupuncturist. Friday, I had both Tobra levels and a gynecology appointment at the same time! (first time for everything) Then in the afternoon, I drove to Chapel Hill to have a Doppler scan to make sure the pain in my arm wasn't another blood clot (it was not - thank god!!)

Oxigination

Sometimes I try to step back and see how much my life has changed in the last three months. Coincidentally, this is the amount of time I have been on short-term disability from work. I SO wished the extra time dedicated to my health would have me in better, not worse, shape than when this all started. But sadly that's not the case.

Probably the most obvious changes are a constant nasty cough and the need to wear oxygen more and more of the time. Well, and my depleted energy, but that's not always noticeable to people if I'm acting like my normal bubbly self. I am trying to embrace this new roll, but it isn't always easy. And I've learned pretty quickly that I have to let a lot of things go - whether it be house work, a non-essential errand, or that thing I've really really been wanting to get done but just haven't had the time or energy.

My biggest challenge right now is the mental game, though. I continue to research everything and visualize the possibilities that lie ahead for me - both good and bad. I want to try to prepare myself as much as possible. I know that things are going to get much worse still, and I want to be able to accept things as they happen.

I am aware of all the scary possibilities, but that doesn't mean that they have to happen to me, or, if they do, that they have to be scary. Not sure if that makes sense. I am training my inner Zen master.

A Litte Less Intensity...and Snow!

Doc (aka Crazy Dog) has a dog version of a snow angel that he likes to do. Here he stops for a moment to pose for the camera.

Sam chewing on a snow ball - literally his ball covered in snow! Doggie heaven.

My last few blogs have been pretty intense but this one's going to be a lot lighter.

It was a good week overall, filled with all of my new normal things - pulmonary rehab, paperwork, appointments. We were pretty much Olympic-watching junkies all week long. I enjoy most everything except for curling - check out this video to find a much better version of curling involving cats.

Is that your final answer?

Monday was a bit of a sad day. It was the day that I told my bosses that I would not be coming back to work. It was extremely difficult, but I know that it is the right thing for me to do. Still some processing to do, but I took that first difficult step. I have given myself a working title of "Stay-at-home-fur-kid-mom."

I am also finding my way quite well with all of the disability stuff. I got some much needed free legal help with my long-term disability and am officially in the queue to get free legal help from another place to apply for SSDI. That is my next big project.

*     *     *

I am hoping that this round of IVs will only last for two weeks. Things are going really well - my lungs have improved quite a bit, my kidneys are handling the meds well and I think that I managed to not catch a cold that Todd caught mid-week. This coming week I see both my pulmonary doctor and my ear, nose and throat doctor to test my hearing and check in about sinus issues.

Other than that, I have been six weeks without alcohol and it has never been more difficult not to drink than when we were snowed in for two days! But I did it. I have actually been a little tempted since then, just wondering to myself why it is I'm doing this and what exactly I hope to get out of it. I'm not sure the answer, but something tells me I need to stick with it for now. And so I will.

This Is (Explicative) Insane

It's as if I've woken up and suddenly realized how insane my life is, how sick I really am. How did I last this long working and essentially living a normal-ish life?

My days are nearly completely consumed by taking care of myself: doing treatments, refilling medicines, ordering oxygen, going to doctor's appointments, handling insurance issues, boiling nebs, taking pills, going to pulmonary rehab. If going on disability is akin to retirement, this is not seeming very 'golden.'

The Disability Reality

The process of applying for disability really makes you face reality.

Here is me on paper: an incredibly sick 35-year old woman with terrible lung function who may not have long to live without a transplant. Sobering. And quite a different picture than I normally have of myself. The lawyers tell me this means I shouldn't have any trouble at all getting approved for disability. I wish that made me happy.

Where I Am Now

I am trying to come to terms with where my health is, where it is going, how much time I might have...and whether or not I want to pursue transplant. I am having a hard time picturing what life would look like after transplant. What would I want to do that I haven't already done?

Here is part of what I posted in my CF group, Older & Wiser, yesterday.

I can't shake the thought of what if I do it [transplant] and then it goes horribly wrong? And then I am dying all over again. Except that I have no idea what's going on because I only half still have CF. And I've had to go through this major fucking surgery to boot.

...When I think about what I would want to do I think of spending time with my family, especially my little nieces and nephews - OF COURSE I want to be around for them as long as possible. But they are going to lose me eventually anyway. What difference does a few years really make?

I feel like I have already done a tremendous amount with my life. I have traveled all over, I have amazing friends, I am a talented writer and I have had a relatively successful career.

There is nothing (or not much) I am eager to do that I haven't already done...although I would certainly like to spend more time doing the things I already love doing. But that will ALWAYS be the case. There will never be enough time with the people I love - ever. So I'm wondering...is this it? Am I done? Is it greedy to want more when I've already had so much?

I have progressed a little more past what I wrote yesterday. Todd and I sat down and talked about things we'd like to do if I had new lungs. That was nice. There are some things we haven't been able to do, and some things we want to have more time to do.

But the truth is, I feel like I'm running out of time to make this decision. And I'm starting to get a little bit scared.

I'm Sick - Again 

And no, I'm probably not in the best state of mind right now. I'm down, depressed, feeling mopey and defeated. I woke up yesterday with a headache, fever, chills, aches - got tested for the flu just to rule that out. I had been feeling sick/run-down off and on for the past few days. Last night I woke up with a pain in my left lung that kept me up off and on during the night. (When the lungs get inflamed, sometimes air can get trapped in the little air sacs and make certain positions and deep breaths uncomfortable.) Blah blah blah blah blah, right?

I am starting on IVs today - again - I made it a month and four days since last being on them. My doctor is increasingly hesitant to start IVs unless absolutely necessary because of my resistance (I now essentially have two virulent bugs that are resistant to almost everything.)

This is INSANE. This is what a person looks like on paper when they are getting to the point of needing a lung transplant. I am what a person looks like on paper when they are getting to the point of needing a transplant. Me. ME. Me??? It's not how I've pictured myself, but here I am.

 

Oh, Canada

Me and a tree: self-portrait

Went to Vancouver, British Columbia, the week before last for a three-day marketing conference. I was with two of my co-workers and it was so much fun! Flew out on Saturday and came back Thursday. Long days of travel but totally worth it.

Vancouver is very beautiful when the sun is shining which, from everything I gather, is not often the case in the fall as it was for us. Here are some cool pictures.

The view from my room...on the 16th floor! Practically the pent house.

The cutest sea otter I have ever seen, at the Vancouver Aquarium - a fantastic place.

Moose Mountie!*
*Mouse Mountie remains unpurchased in Canada :)

Waterfall at Capilano Suspension Bridge park

Cool old tree in the walkway at Capilano Suspension Bridge park. There were tons of boardwalks, tree canopy walkways, a cliffwalk (below) and other various look-off spots throughout this very beautiful (temperate) rain forest.

Three Amigos. These are my unbelievably cool and awesome friends from work that I went with to Vancouver. Kristen (left) is our philanthropy manager and is the most amazing supervisor ever; Debbie (middle) is our marketing/communications person and is wonderful as well. We had a great time traveling together.

Me on the cliffwalk!

Planes docked at Vancouver's water plane airport, a few blocks from our hotel on the harbor (or 'harbour' as they would write). It was so cool watching them take off and land.

View across the harbor on a very pretty day.

While in many ways, it seems like you are not in another country in Vancouver (going through customs - really??) in some ways it does - those are the things I most enjoy about traveling. It was cool using the different money, and hearing people say "loonies" and "toonies." I liked being able to strike up a conversation with an average Canadian person about hockey and have them actually know essentially what was going on with their local team. And the people there seemed very friendly for the most part. But geez was everything expensive!!

Switching Gears...

Now I know you all are dying to know (not really) how my back did through all of this with my having neglected PT for quite a while and how my lungs did while I was out there. The easy answer is that my back gave me a lot of trouble, mostly because of the awful chairs at the conference, but was easily controlled with Tramadol (my non-narcotic pain medicine that has basically become my best friend over the last two years.) My lungs did okay...

I like this map of Vancouver because you can see what a water town it is! It also makes it easy to imaging how beautiful the scenery is. By the way, the green area under where it says "Unique Media" is Stanley Park, kind of like their Central Park. It's a really lovely place with windy roads, lots of huge trees, walkways and people.

Expanding on that a bit, I did a lot of walking around in Vancouver - my lungs really like that - and rode the recumbent bike once at our swanky hotel, so I did get some exercise while I was out there. My coughing was well controlled with my go-to guaifensen "blue miracle" pills.

As far as oxygen on the flights, I did not use it or arrange to use it on the way out partly because I didn't think I would need it (sats had been running 97 or so), but really because it just slipped my mind that I would have to make arrangements to actually use it. (Turns out, you are not supposed to put a POC in your checked luggage because it uses a lithium ion batter - oops!)

However, I did have my pulse oximeter with me on the flight out and my sats dropped well into the 80s, so I knew I had to make arrangements for the way home. I will spare you the details, but suffice to say it ended up being a giant mess - there was about an hour of time when I was furiously making phone calls back to the States and was afraid that I would have to both push my flight back and shell out hundreds of dollars for either another portable oxygen conentrator rental, an extra battery, express shipping, another hotel room night, etc. but it worked out amazingly that I was able to use my own unit. Live and learn.

Yes, I missed you guys, too...

Now I am back home. I can never believe how much I miss my cats...if I had ten million years to spend with them, I would want ten million and one. My dad is still in the hospital in Cleveland, unfortunately - that has been worrisome. And I am getting back into doing my PT to see if it will help my back and I am exercising a lot and being more mindful of what goes into my body. I am going to see my pulmonary doc soon - maybe even this week - to make sure I'm in a good place going into our Belize trip in early November.

But most important of all - and for those of you who know me this will come as no surprise - it's hockey time, baby! Time to start cheering for those Canes.

Until next time,

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.

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. :)

"There is beauty in an organized closet."

TNC's Green Swamp Preserve in Brunswick County - visited during our trip to Holden Beach last weekend

To tell you the truth, I've been a little lost lately for what to blog about. Or maybe I was just saving all my thoughts up for one big moment.

Things with me are going really, really well. I am back to doing some kind of yoga or exercise almost every day, I am cooking more than ever (and trying new things, too), I have gotten a lot of long-overdue straightening and organizing done around the house, and I am working a ton.

At work I have been in the midst of a large project for a while now, migrating The Nature Conservancy's state chapter website to a new platform. It has been an incredible amount of work, and especially this month as I am trying to wrap things up. It's been really good - the work is very rewarding. The website is my baby! I have had a bit of help, but largely it has been just me choosing pictures, editing text, adding links, and updating content. And I want it to look the best it can for when it goes live mid-February.

Today I am taking a day off. It is the first work day I have not worked in many weeks. It is much needed and feels nice. Hockey game tonight!

But anyway... When I last wrote I believe that I had a lingering sinus infection even after I had stopped antibiotics. I went to the ENT and was set to start on some antibiotic nasal rinses after my culture results came back when - miraculously - the infection cleared up. Just goes to show that time (and patience) is the best medicine sometimes.

About that time, in late December, with much of my sick leave used up, I decided to apply for FMLA (Family Medical Leave Act - protects your job when you are out sick for an extended period) for the coming year at my boss' suggestion. Not that anyone at my office would fire me, but I work for a large organization, and we don't want to raise any flags with the higher-ups. So I did it (special props to my doctor who finished the paperwork the night before his two week trip to Ireland for the holidays!) And I was denied. Turns out there is a federal mandate that you have to work 1,250 in the previous 12 months to qualify, which means working ~25 hours/week. (This is absolutely crazy to me...if anyone needs FMLA it is me; I am only working 20 hours/week right now and working much more than that would be difficult.)

I decided, with my boss' approval, to up my hours to 25/week. This is good for a number of reasons: I have too much to do in 20 hours at my job (especially right now with the website stuff); if I need to go on disability, it is better that I be working as close to full-time as possible; it will allow me (eventually) to take on more at work, further securing my value as an employee; and the extra money is nice, too. Because I am not willing to give up my day off (need that day to rest and for appointments, phone calls, etc.), that may mean a couple of hours working at home each week. But that is okay with me.

But this extra work time means sacrifice elsewhere. After all, I only have so much energy each day. It means that social time is even more limited during the week, and I'm trying harder than ever to get to bed earlier. One thing that has been good is that I have been experimenting with doing exercise instead of (rather than in addition to, like before) my mid-day treatment. It saves about an hour of time. I can't say the two are always equivalent, but if I exercise and make an effort to get some good coughing in, I feel no worse for the wear come my evening treatment.

The only complaint with my lungs right now is a persistent wheeze that worsens when I exercise (I'm also having pain when I exercise vigorously.) The wheeze was really mystifying me. I'm still on an elevated dose of Prednisone (I haven't been able to get lower than 10 mg/day) from my last exacerbation, which should stop me from wheezing. But I think I finally figured out what is causing it. I ran out of my Singulair a month ago or so. Now that I have started back on it (just today), we will see if I improve. I hope so, and that I can again continue to ween off the Prednisone.

D.C.

The always beautiful Union Station, Washington, D.C.

I'm a little behind in blogging... *sorry* I really do love writing and keeping you up on the latest happenings of the Catboogie. So I hope it isn't too discouraging.

Week before last I had to go to D. C. for some work training on Monday and Tuesday. I decided to ride the train up - it's about six hours from Raleigh by train; 4.5 to drive; and I hate flying, so it seemed like a good option. The ride up was smooth although I was a little panicked because I'd left the office on Friday in such a haste that I forgot to print out the information about the meeting time and place! I had emailed various people asking, but they were not answering over the weekend. I thought I figured out where the training was held; and I thought it probably started at 9, but decided to arrive at 8:30 for good measure.

So let me back up a bit. The hotel that was booked for me by our national office was called Hotel Rouge. Usually when one goes to D.C. for work they stay near the World Office proper, which is in Arlington, VA, so this was truly a treat. The Hotel was near Dupont Circle, a sort of newishly gentrified part of town (by newish I mean the last 20 years). It used to be sort of ghetto but has since turned into a thriving gay and hipster community. I was right at home. :)

I checked into the Hotel Rouge about 4 pm on Sunday. I quickly got settled and decided to set out for the National Gallery because I had never been there and they had an exhibit of Allen Ginsburg photographs. I have always loved the beats so I was super excited about it. I browsed through the main gallery, checked out the Ginsburg photos (which I loved!) and then crossed the street to the Sculpture Garden - a block large exhibit of different modern works set along a gravel path.

When I was done with that, I decided to head back into the vicinity of where I was staying and stopped at a restaurant near Dupont Circle and got two appetizers and a couple of beers. Fortunately I was not hungry because of the incredible heat - they were the smallest appetizers I have ever gotten!

The next morning, I got up and arrived by 8:30 at the alleged meeting place only to discover a locked door and a receptionist downstairs who had no clue of what I was talking about. Fortunately, around the same time, I received an email from the training coordinator who informed me that the training actually did not start until the following day. Not quite sure how that mistake happened! Pretty embarrassing, actually. But in any case, I returned to my hotel, changed clothes, extended my stay an extra night, and then changed the return ticket for the train.

The downside of the mix-up were obvious: I'd messed up the dates of my training, I needed more clothes and would be slightly short on a couple of my meds. But the good side was that I had an entire unexpected day of sight seeing in D.C. I decided to go to this new place called Museum - a museum of news. It sounds kind of weird, but it was really cool. Some of the highlights: part of the Berlin wall, part of one of the World Trade Center towers, Ted Kaczynski's cabin (the actual one!), among many many other cool things.

Section of the Berlin Wall

Ted Kaczynski (aka The Unabomber's) Cabin

After that, I headed to Madame Tussauds wax museum. I had never been and thought it would be a good way to kill some time so I didn't get stuck riding the subway during rush hour. All in all a very good day in the city.

Waxen Obamas

Tuesday morning, my training began. It was really good - we were introduced to TNC's new website platform, and talked some about web writing in general. That night, they provided dinner for us at a restaurant near there. No time for sight seeing that day. We finished off the training the following day at noon. I made my way back to the hotel, got my stuff, and took a taxi to Union Station. I love the feeling of just being in the city - you can pretend like you live there, fantasize about the urban life, and no one knows differently.

The train ride back was more crowded than the ride up had been. Every seat in our car was taken - many people were aboard for a long haul (the train runs NY to Miami). Because of various delays, I was two and a half hours late getting back to Raleigh.

It was good to be home. It was even better that I had the next day off work to just chill, unpack, rest up and regroup. Only seven days until Todd and I would set off on another trip - to Cleveland to see my dad for the Fourth of July. More on that to come.