The Art of Busy

I am making an art out of being busy - that is, I juggle a million things with ease and manage to arrange them into one beautiful design, all with the grace of a dancer. Sort of.

What I really mean is that I have been trying to get a tremendous amount done while also being mindful of my health and energy levels first throughout the day. It's quite a shift for me from go-go-go.

I have been consumed the last two weeks with both our bathroom renovation (choosing, ordering, trips to hardware stores...) and starting the process of applying for long-term disability through work (paperwork, paperwork, paperwork!) Not to mention all of my regular stuff (pulmonary rehab on Tuesday and Thursday, acupuncture on Wednesday, getting my allergy shots 40 minutes from home, arranging oxygen delivery, renewing prescriptions, other appointments, a hockey game and time with friends here and there...) 

Oh, and I am also starting to plan a bachelorette party (I am the maid of honor after all!), trying to get my handicap tag from the DMV (urgh!), revisiting my physical therapist from pre-surgery to get my back pain under control (it's getting better) and making preparations to meet with a lawyer who is going to do our wills. WHEW!

And I am doing all of this while contemplating two of the biggest questions I will ever have to answer in my life: Is it time to stop working? and, do I want to pursue transplant? And the hundreds of sub-questions that go along with both of those.

But, I am pacing myself. Thanks to not drinking, my head is in the best possible place to make these hard decisions and tackle all of this stuff. And since I started ginseng/acupuncture I have had more energy which is awesome.

All and all things are going pretty well. My back pain is getting better thanks to PT, restarting my stretching and acupuncture. Pulmonary rehab is going awesome - I absolutely rock the place every time I go. I am needing a little less oxygen to get around - more for exercise than simple exertion. My PFTs...still bouncing up and down and pretty much the same as they have been.

But I would be lying if I said I thought it was possible for me to recover in a way that I have recovered from infection/exacerbation before. I am clearly in a new stage of my disease - I feel it, my numbers show it, people who know the most about me can see it. I might even call it "the coughing fit stage" because I have never had as violent of coughing attacks as I have in the past weeks. (By the way, for those who think I "look great!" Thanks for the compliment, but please remember that CF is an invisible disease.)

My lungs are decaying and there is no question: we are on the road to transplant. If I have my way, the road will be long and windy. I would love to go on disability and live for 10 more years before needing a transplant! If anyone can do that, I can.

So anyway, please wish me luck in this process of applying for long-term disability. From what I have read, I need to suit up in a coat of arms. I am NOT looking forward to defending myself for deserving this. That is incredibly hard when I have already needed so much external help to realize this is what I probably need to do, what is best for my health.

When it's all over, a huge celebration will be in order - maybe even including a Blue Moon or two. :)

p.s. I should say that I have not 100% decided about going on long-term disability right now. But my HR person has advised me to start the process to find out if I qualify. It will be good to know even if I don't end up needing it now. But lord the paperwork!

Week of Wow

This past week has been one of the most intense, rewarding, thought-provoking weeks in my life.

It started on Monday with my first appointment with a new, amazing acupuncturist (Lynnea, who is also a medical doctor.) I knew that the visit would prompt positive changes, but I had no idea how badly I needed them.

Here is how it went: I arrive slightly short of breath. Lynnea asks if that is normal for me, I say yes. She right away gives me about 10 needles in my neck and shoulders while we sit and talk for the next 30 minutes, which seems to help my breathing. Over the next 3 hours we discuss my entire life's medical history (illness, surgeries, mental states, drug experimentation - everything!)

When she finds out that I am a regular alcohol drinker, a 20-minute digression ensues into the harm that alcohol is doing to my body - liver, kidneys, brain, it's especially bad for people with diabetes.

This led to a minor breakdown - and I have to say that ultimately it was more helpful than any single session in my years of therapy. Lynnea hit upon very raw and sensitive spots for me - she has a knack for finding those from what I can tell. It's not about judging me, she is speaking up for what my body wants. And, she said, I am sometimes going to hate her for it. Tough love!

There is a Chinese saying:
people with a strong constitution 

tend to abuse it.

She spelled out how my fortitude - which has done so much to help me cope and manage my disease thus far - has also allowed me to 'plow through' some other issues without really stopping to let them sink in. As in, coming to terms completely with the fact that I have a chronic disease that is going to eventually kill me. Not just my brain, my brain and my heart. This stuff's not for amateurs.

It's hard to believe it, but I think that she's right: part of that rebellious teenager sneaking cigarettes outside my bedroom window (I know, right???) is still inside me. Alcohol - not always, I would argue, but more at certain times in my life and recent history is definitely one of those times - helps me to escape. It is my escape button.

How do I know she was right? Now that I have quit for 7 days, I see all of the mental energy it has freed up. Before, I was constantly caught in these cycles of wondering, how much is okay for me to drink today? Should I drink today at all or is that bad? Fuck it, I feel like drinking today! And then...   Did I drink too much yesterday? Because I'm feeling a little dehydrated this morning, maybe it's beer last night, I must drink extra water today!  ...My body feels tired because I have been drinking too much lately - bad me! ...I was good yesterday, I only had two beers. Etcetera, etcetera, etcetera.

All of that was just an illusion - a (very successful) game that my brain had invented to avoid sometimes having to think about how difficult and shitty it can be to navigate life with a chronic disease - in part. In part, it's just that I really really love Blue Moon (and beer in general.) Which is why it isn't my intention to never ever drink again, good lord. I honestly don't know how this is going to play out, all I know is that right now I need to not do it at all.

I could go on and on...  But to wrap up this story, Lynnea had a lot of other good suggestions of things for me to try and/or ask Dr Coakley about. I was impressed with her medicine/supplement/physiology knowledge about everything! After over 3 hours of talking, she finally examined me - taking several pulses, drawing a diagram of my tongue and its various markings, listening to my lungs. I finally got on the table (which prompted a small lung bleed - what a first impression!) for a little needling and electricity. And I rounded the whole thing off with a good coughing fit for which she adjusted my chi and pretty much instantly stopped the coughing.

So back to my opening statement. Now you see how this has been an intense week - a lot of realization and coming to terms with emotions that have been hiding below the surface. It has been rewarding because I have felt better, whether it's from not drinking, pulmonary rehab or all the other good stuff I've been doing - my lung functions were up some at my pulmonary appointment on Thursday which is great!

It has last but not least been thought-provoking not only because of my internal work but also because I am being forced to begin the process of researching my options for further disability assistance should I feel that is necessary. This is not only very tedious in terms of paperwork and bureaucracy, but also emotionally difficult as well. I love my job, I love my co-workers. I am incredibly fulfilled by my work. I do not want to give it up.

There is also potentially a huge effect on my health insurance - I'm not sure all the ins and outs of this yet, but if I were to lose my work insurance (hopefully not!!!) I would be in an entirely different situation when it comes to medical insurance, prescription coverage, and, especially, transplant. So that will no doubt be a big part of my decision. It would be nice to be able to make the decision based entirely on what is best for me, but unfortunately that is not the world that we live in, Obamacare and all.

So yes: busy week, crazy week. I didn't even mention that our dog Sam finally had surgery to remove some lumps, that we are Finally preparing to see a lawyer to get our wills done and that we are FINALLY planning on starting to renovate our bathroom next week!! Stay tuned.

Time to Get Down to Work

I am currently four weeks into being off work on short-term disability. The current plan is to be on for two more weeks and then reevaluate. I am taking this time to try to focus on my health and improve my lung functions and functioning (i.e. needing less oxygen). But what does it mean to "focus on my health?"

Well, I honestly am not totally sure. The primary thing it means is attending pulmonary rehab for 2 hours twice a week to increase my strength and stamina. I have completed two weeks of that so far. And not only that but pushing myself to be active between rehab sessions as well. I am trying to do something strenuous one additional time per week (I will tell you at some point all I do in rehab) as well as add in less strenuous dog walks. And maybe get back into a pilates classs at the Y.

But what else? Well, taking it easy, getting plenty of rest, spending LOTS of time with my kitties, trying to stay hydrated...staying connected with family, friends and the CF community, catching up/keeping up with things at home, documenting everything, of course.

But there is something missing... 

Let me back up. For months, two of my best friends have been trying to get me to see this Chinese doctor who is an acupuncturist and also an M.D. My two friends have both had amazing results with her. I have dragged my feet because, well, for a few reasons.

One, I have done a lot of acupuncture in my day and while it helped some, I'm not in a huge hurry to jump back into it. It's sometimes not the most fun thing in the world. Two, I knew it was going to be a big money and time commitment (one of those I have a lot of right now! The other, since I'm not working, not so much...)  Three, I knew that going in there would be sort of a life-changing experience and I honestly didn't know if I was ready for that.

See, Lynnea doesn't just treat what you supposedly go to her for, which in my case would be help with lungs, kidneys, sinuses, immune function, back pain, etc. She treats everything. And, to put it mildly, I know there are a lot of things I could be doing better to have a healthier lifestyle.

But it's so hard! I honestly do so so much and spend so much time to stay healthy: I am extremely compliant with treatments every day, I go to all my appointments, I am very proactive with my doctor and my CF care that I feel like I can cut myself a break when it comes to other stuff like how much coffee I drink, what kind of (sometimes unhealthy) snacks I eat, how much beer I drink. And to some extent I think this is okay. But there is this nagging voice inside my head that wonders - what if I gave it my all, what if I did everything possible to try to feel my best, how good would it be possible to feel? And what effect would that have on my lung function?

I honestly haven't had the will power to find out. Or maybe it's that I am afraid that if I did all of those things I would still be pretty much the same as I am now - I'm not wanting to put in all the time and effort for an unknown reward.

In any case, all of that I have just written about is me when I am accountable only to myself (and you all!) But starting on Monday, I am going to be accountable to Lynnea also. I intend to dive in and give it my all. No holding back, no exaggerating, no fudging.

I have at least two weeks off of work left. If I am going to do everything possible to be my very best self between now and then, I think I am starting down the right path.

Sometimes it doesn't pay to wait

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

Hello loyal readers!

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

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

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

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

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

Image taken from sodahead.com

In other news:

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

Image taken from kbosweeney.wordpress.com

Lost...and found?

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

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

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

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

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

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

Back saga, part deux

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

This coming week I am going to try a couple of things:

• I am going to see a new physical therapist, one who knows a lot about both herniated discs and how to exercise properly with them.
• I am going to see a woman who does massage/body work/energy healing. My friend has been recommending this woman to me for years, and now finally seems the time to check her out. I'm a little skeptical but at this point I have nothing to lose.
• I am also going to continue with my acupuncturist (yay!) and incorporate 30 minutes of massage before my treatment.
• Getting another steroid shot in my back. The last one didn't help but they are usually done in sets of two or three so maybe something good will come of it.

Additionally, I started a new medication this week called Neurontin. It was first used to treat epilepsy but is also used to treat nerve pain. It does seem to be helping - I've been taking a lot less pain medication since starting on it - and I haven't had any side effects with it yet. So it is promising.