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.

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.

Belize and Beyond

It's a cold, rainy day - perfect for catching up on my blog.

Sunset over the swimming pool

We made it to Belize! Hard to believe that was already almost a month ago. Belize is beautiful and we had a good time. Unfortunately, the weather was very rainy (yeah, I know it's a rain forest!) and I got a little stir crazy. But it was probably what I needed to have lots of time to lay around sleeping and reading.

We had absolutely amazing food - fresh fish and seafood every night, lobster!! - drank lots of Belikin and rum drinks. Todd went fishing. We had one amazing day of snorkeling where we saw sea turtles, tons of fish, beautiful coral and swam with the (harmless) nurse sharks. The resort was very nice, the staff were all super friendly and the rest of the company there was enjoyable.

Backing up just a little bit...

Had a pulmonary check-up/re-check from IVs three days before we left for Belize. It was an incredibly intense appointment. After three weeks of going into the hospital for Colistin and all the crazy side effects, switching meds around and exercising my numbers were still crap: 34% FEV1 at 34 years old is NOT where I want to be. I think that was even a little lower than before I went on IVs. Ugh.

When Dr. Coakley walked into the room, I was crying, so disheartened by the numbers and feeling so frustrated and hopeless. Todd was with me. The three of us talked for a long time. In true Coakley fashion, we went through what we had done and concluded we had taken the best steps. Did we get the results we wanted? Absolutely not. But had we done the right things? Absolutely.

And as much as transplant and declining health feel like they are creeping up on me, he assured us that we aren't there yet. And, like always with this disease, you just have to keep trying things to find something that will work. Things are just getting trickier, but that is no reason to dispair.

We both walked out feeling extremely positive and, if it was even possible, even more impressed with Doctor Coakley than ever before. I love this man!!!

The Best Thanksgiving Ever

Chef Jay carves his masterpiece

I have usually gone to Cleveland for Thanksgiving in recent years. And I usually drive. The only way I could make it happen this year (with my aging car and not wanting to take extra time off work) was to fly up on Wednesday and come back on Saturday. The visit was short but sweet.

Child labor: the girls haul my backpack up two flights of stairs to my room in the attic

I seriously had one of the best Thanksgivings ever. My step-sister and three nieces (age 9 and 7-year-old twins) came to pick me up from the airport. "Hi Aunt Laura!" They were so cute and excited to see me. By the end of the day they were crawling all over me and sitting in my lap, and of course trying to recruit me to play the game of the hour. So sweet. They crack me up.

Then there was SIMON, my brother's 2-year old. My brother, his wife and Simon arrived Wednesday as well. We all met up at my dad's house before dispersing for the evening. Simon is amazing. It is no surprise that both his parents are professors. He is so smart and talks and talks what seems way above what normal kids his age would. He has the biggest most beautiful blue eyes. And he is so careful and gentle with things, and very polite and well behaved. Love love love!

So what made this the most amazing Thanksgiving ever? For one my dad was doing pretty well health wise, better than when we saw him this summer. That was awesome. Secondly, I got some one-on-one time with almost everyone, and lots of niece and nephew time. Thirdly, the food (compliments of my step-brother, the amazing cook Jason) was absolutely phenomenal. To top it all off, we had the prettiest snow, falling in big flakes, covering things just enough to be perfectly picturesque. Enough to make this ex-northerner a little sentimental.

Amazing Annual December Soap Event

We again participated in the Raleigh LGBT Center's First Friday event last night. It had been a while since we did a soap display so we were kind of scrambling around a lot this past week. Our soap looked so so good. I think I was most proud of this display than any other one we've done. There were no bars that looked amateur. We rocked it!

Wintergreen tree, lemongrass scrub, cinnamon clove gingerbread man, lavender star

That All Sounds Great, But How Am I Really Doing?

So glad you asked! As you have read, I have a lot of awesome things going on in my life and am surrounded by amazing friends, family, pets, doctors...what more could I want?

Well, I want to be able to sweep my house, walk up stairs and carry groceries to the car without getting short of breath. Getting out of breath sucks, it really does. It has made exercise so much more difficult for me; I've had a very hard time motivating myself to do it. I know I need it more than ever, if I am going to recover my numbers that is how it will happen. But I can't seem to get over the hump.

I have been working on acceptance. I need to accept where my lungs are at, adjust my life to work with how they are, and realize that I am going to have to let some things go. It sucks but I am not the only one to ever have to go through this. But while I am trying to accept things, my sadness and frustration is still very much alive below the surface...I've been having a very hard time with my new position in life.

I have more outwardly becoming a "sick person." It is harder for me to control my coughing during the day, at places like work, I'm congested, my voice sounds like I'm sick but I'm not, my shortness of breath (walk too quickly and also talk? not anymore). I know I've talked before about handling health decline with grace, but damn this shit is hard.

Bad choices

Spoof cereal boxes

I spend a great deal of my life making good choices when it comes to my health. I am definitely better than the average bear when it comes to self-care, compliance and pushing myself (some people probably think I push myself too hard but I say you can't have one side of that coin without the other.)

But sometimes when you are sick, you feel like it gives you the right to make bad decisions. Example: last weekend (after a week of coming down with a cold, feeling crappy, being frustrated with my health, being slightly depressed and knowing that I would be starting IVs again soon) I stopped by the beer store on my way home from work and bought an inordinate amount of craft beer, which I intended to enjoy mostly by myself throughout the weekend. And I did enjoy it. (Passed my "morning after" test of not feeling guilty or overindulgent.)

Sweet Potato Lager is so delicious this time of year

So I can't say I have regrets about that particular situation, but it is a perfect example of me feeling entitled to make a bad decision. Ideally, I should have been drinking as many clear fluids as possible and making sure I got good rest (alcohol can also affect that) at the very least. By the way, the weekend was not a total throw-away, I took two good walks with the dogs, which was about all I had energy for exercise-wise -- but I was proud of myself for doing it. I also kept up with all of my normal stuff and stayed very well hydrated during the daytime hours. :)

Another example of feeling entitled, I LOVE sugar cereal. I love it so much that I have not allowed myself to buy it for the better part of many years - it is like CRACK to me. When there is a box of sugar cereal in the house, my eyes pop open in the morning and I am immediately thinking about Corn Puffs or Golden Grahams. Seriously. Having diabetes, sugar cereal is one of the worst things you can eat because of the fast and furious spike in blood sugar.

I'm not sure where this feeling of entitlement comes from in me. I know that pretty much forever, when I would go to a doctor's appointment or have to get a shot or anything, there would always be a special reward afterward: Taco Bell for lunch, McDonald's ice cream. So maybe my brain is wired that way. And I'm not saying that is a bad thing; as a child it was nice. 

So, last time I was on IVs (a meager six weeks ago), I went to the store to stock up on some things and decided to buy a couple of boxes of Crunch Berries (because of the fact that I had to be on IVs for two weeks and was feeling totally crappy.) I ended up having slightly better control over the Crunch Berries - maybe because my appetite was so sparse now that I think of it. But unlike with my sweet potato lager last weekend, I did not pass the "morning after" test - I felt guilty every time I ate them.

Now some of you might say (my mother amongst you) that I deserve a break; that I should treat myself because of all I have to go through; even that I deserve it. And what I'm saying is, maybe I don't. Or, maybe I deserve something else. Don't get me wrong, this doesn't mean that I'm not planning to indulge ever again. But it does mean that maybe I will start to look at my reasoning a little more closely.

This time starting on IVs, I had a realization somewhere in between buying the Ho-Hos, really wanting a beer last night and just now: Just because life is hard does not give me the right to beat myself up over it; just because I go through difficult things does not mean that I necessarily deserve a reward. I am the only one who suffers - both in the long and short run - as a result of my poor choices. Hmph. Going to need to think on that one for a while. Clearly there needs to be some balance between sainthood and over-indulgence. Ah, the ever-elusive 'happy medium.'

Taking it one step further: The thing about doing something wrong over and over is that it gives you a false chance to reconcile with yourself every time. (It's what I call cyclical addictive thinking.) It's the 'I had Crunch Berries this morning but I will not have any more refined sugar for the rest of the day/week/year!' and the little feeling of elation that comes with it. Most of the time, you end up breaking that promise because - I think - we get addicted to the elation that comes with pledging to do better in the future. (Conversely, or possibly concurrently, I think that people get addicted to the 'beating themselves up' that comes with making poor choices.) I definitely have some of the former in me.

But I also wonder if I am addicted to the "morning after" test itself - I kid, sort of - the always wanting to recount and assess how I feel about things that I have done. I sometimes wonder: what would my mind and body feel like to be totally free and clear? - I think deep down that is a goal that I am afraid to attain. Like life, while idyllic, would be too boring or something. But how would I know?

I read a piece of advice in O magazine a while back that has really stuck with me: Do more of things that make you feel good; do less of things that don't. So simple, yet so brilliant. But it's a good goal for me to strive toward.

Adventures on IVs

Sometimes it seems like every day on IVs is an adventure. Here are some of the highlights and lowlights of the past week.

• Last Saturday, I had my first Tobra levels which were, thankfully, right on target. That means my dose was good and, more importantly, no rechecking necessary after a changed dose. (Tobra levels require two sticks, pre- and post-Tobra.)
• On Sunday night my arm started getting really red (partially) under where my dressing was. This required a visit from the nurse Monday morning (the third in four days). We discovered that I was probably allergic to a new type of cleaner they use in the dressing change kits. To be safe, we went back to the old cleaner and also used a new kind of dressing for people with sensitive skin. It has been better, but still a bit itchy under there. I think it's just the dry weather.
  
• Tuesday evening was the second evening in a row that I noticed slight ringing in my ears, more like a high pitch sound, actually. It only lasted about 10 seconds. Ringing in the ears can be a side effect from Tobramycin and can lead to permanent ringing - yikes! Tobra can also cause temporary or permanent hearing loss. Unfortunately, it is has happened to a good number of people I know in the CF community. I've had the "ringing" happen before sporadically, but never consistently. My doctors and the home care company were quite concerned...they wanted to know the exact details. Luckily, I had Tobra levels scheduled again for Wednesday so we could make sure my dosing was correct. Unluckily, I've found out hearing loss/permanent ringing is something that can happen even if your levels are in check.
  
• Second set of Tobra levels on Wednesday also ended up being good. Yay! Unfortunately, the second poke hurt like hell. In fact, it still hurts. I admit, I can be a baby about blood draws, but ugh. Sometimes it just hurts like hell. Fortunately, not very often. Question mark on where they are going to draw my next set of levels now that my good vein is out of commission for a while.
• Mid-week was when I really started feeling better from the meds. The biggest change is that my energy is so much better. But my temp is also down, lung pain gone, appetite WAY up...now I'm just waiting for things to look a bit better with my lungs. Still, it's so much easier to deal with all this shit when you are feeling halfway decent.
• Both Wednesday and Saturday, we went to see two good Hurricanes games. Not health related, but still exciting. :)
• Friday night - I had my first beer in a really long time. It tasted really good. Recently, I have basically cut out drinking and caffeine - just to give my body and my mind a break. I like it.
  
• Last night and tonight, I got an "itchy arm" in the arm my picc line is in. It started with a "scratch me" feeling and before I knew it, my arm was all red. No idea what caused it but I hope it's not related to any of the medicines I'm on.
• Did I mention I'm not looking forward to Tobra levels on Wednesday?
  

I guess that's all for now.

Update: Monday am - discontinued Tobra due to overnight ear-ringing (tinnitus). While I am happy to have one less thing to do and not get levels drawn anymore right now, I am a little freaked out about what this may mean for the future. It sucks to have complications with (what might be) the only thing to really kill one of my bugs.

I tried to talk Dr. C into half-dosing until Thursday (which will be the 2 week mark) but he didn't think that was a good idea. He cited some study that shows most people get all the clinical benefit they are going to get after 10 days on IV antibiotics, and I am at 10 days now, so not the worst thing in the world. Honestly, I would be more freaked out right now if I wasn't feeling better. In the future, he said, we may either do Tobra or Tobi, but probably not both at once anymore. And I am to follow up with the ENT for a hearing test in a couple of weeks. Many hearing complications during IVs can be reversed, but some, sadly, cannot.