Oh Snow!

I realize I'm no different than the rest of the population in the Northeast, save those who have escaped to warmer climates, but the weekly snowstorms have become a tad tiresome. It is, however, a good opportunity to be Zen about it and accept whatever comes our way with equanimity. Still working on that one!

Processing

As my grandmother used to say when we were looking for something and finally found it: "it's always in the last place you look!" It didn't dawn on me until I was an adult that her statement was in jest: I just thought it was funny that it was true- you always found something in the last place you looked- what a coincidence!

Such was the situation with figuring out the somewhat confusing results of the Level 3 Baird test I had last August. After seeing several different specialists to interpret the results, all of whom said they really couldn't make heads nor tails of it, I finally found someone who told me that it made perfect sense to them. And yes, there is a diagnosis!

After my initial response of relief and and happiness that *finally* there is an answer; a name for this, and treatments, the reality started to sink in and I felt my spirits settling into a funk. Another serious, chronic illness to contend with. It's true that even with CF there are new symptoms from time to time and things I haven't yet dealt with, but for the most part, it's something I'm very familiar with. I have a lot of learning to do in order to bring myself up to speed with this latest issue.

I have a mild case of pulmonary hypertension, also known as exercise induced PH. The reason that none of the other specialists were able to figure this out is because it's rare and a very small specialty. Most physicians, even pulmonary and cardiac specialists, aren't familiar with it. Only a PH specialist would be able to interpret the results and make the diagnosis. So there is is, at least we finally know what it is and it can be treated.

I asked if this is secondary to the CF lung disease or a separate entity altogether and the answer was: "It's difficult to know". Obviously, the lungs and heart as well as the major vessels that oxygenate the blood are all very closely connected and what affects one part of the system will affect the others. However, this doesn't appear to be as a result of CF, but more something that is occurring in conjunction with it. Will it get worse? There isn't an answer for that either. Some literature indicates that exercise induced PH is an early or mild form of PH, but Dr C said his opinion was, after having treated patients with this for 20 years, that it is a milder form and may never get any worse. No guarantees, of course.

The treatments are oxygen and some oral, inhaled and IV drugs. At the moment I'm only requiring O2 with exercise so am doing all I can on that front already. There is a drug, sildenafil, which helps some patients to feel better and lessen the symptoms of fatigue and shortness of breath - more commonly known as Viagra- which they are going to try me on. As the NP said, I don't really want to know how it was discovered that Viagra helps patients with PH, but there is clearly potential for a very funny story there. Drug companies being the considerate entities that they are, the brand name has been changed to Revatia when used for PH. Thank goodness I don't have to walk into CVS to hear them announce: "Your Viagra 'script is ready!". At least there is that.

The PH clinic nurse has pointed me to the PHA, which has a very helpful website with lots of teaching materials and information for the newly diagnosed. With the snowstorm which is coming for this week it looks like I'll have plenty of time indoors to get myself up to speed. I'm fortunate that chronic illness isn't something foreign to me, but as with anything new, it's going to take some adjustment and a bit of time for me to come to terms with this latest bit of information.

Under Construction

And now for some photos of the progress. It has been 9 days since the bathroom was demolished and although it doesn't look like much has been done, there have been plumbers, electricians and carpenters here all day every weekday.

This wall, where the shower used to be on the right and the pedestal sink on the left will be the home of the new 4' vanity and linen tower.

Cats do NOT like construction. Or any disruption in their home or routine, for that matter.

Millie checks out the new shower base.

This wall seems solid and plumb. Excellent for scratching!

Shower valve.

Caution: no shower here yet.

This is where the new dual-flush toilet will go. For those who are not familiar- a smaller amount of water is used for liquid waste and..... well, you get the idea. There is going to be a storage cabinet above the toilet in the eave space and the shower is to the right.

This last photo was 2 storms ago. You get the idea.

Groundhog Day

Today we receive another 10 inches of snow, this winter I could probably copy and paste my last post each week and it would be true. I was never able to watch the entire Bill Murray movie Groundhog Daybecause I found it entirely too annoying to watch them repeating the same day over and over. I realize I was missing the "bigger message" of the movie, but there it is. And now, in a way I don't need to watch it; although the plot differs, we're living it out this winter.

Each week has provided its own significant snowfall. I've actually lost track if we are on our 3rd or 4th blizzard. Does it really matter? We've run out of places to put the snow and this year I do think that plow drivers are intrinsically evil people. I'm convinced they wait around the corner to see when we finish shoveling or snow-blowing before coming down the street again and dumping a fresh mountain at the end of the driveway. On the news they said one town actually has police escorts for the plow drivers to protect them from irate homeowners. Imagine!

On a brighter note, the upstairs bathroom is progressing well. I have to hand it to the workmen; they show up and work despite the weather.

This is the bathroom before the demolition started:

Love the knotty pine!

Joe's closet on the left and the catch-all closet on the right. Ripping this area out will give us much more space in the bathroom.

View from in the closet. Toilet at the left, small pedestal sink and the is shower on the right.

Our little shower - 32x34". The new one is going to feel so spacious!!! No more bruised elbows.

This is the view into the bathroom from the hallway. The old shower is behind the wall on the right. It has always been impossible to have more than one person in the room at one time due to the layout. Now it will be that much bigger and easier to share the space. I'm a bit sad to see the wallpaper go, it's a Waverly print that I got on sale because it had been discontinued (just before my 30th birthday.... yep, it's been up for 16 years!) I love the colors and pattern as much as I did the day we put it up, but I know saying goodbye to it will be totally worth it.

Snow Job

After the Wednesday blizzard it seemed almost miraculous that Thursday dawned sunny and blindingly bright after the previous day's darkness and storm. I couldn't resist taking a walk with my camera before the roads got too busy.

I love the way the house looks covered in snow, so cozy and charming.

The sun shining through a snow-covered tree.

The big oak in front of our house was creaking and groaning with the coating of ice and snow. I will neither confirm nor deny the fact that I got nailed - not once but twice!- with falling snow while snapping photos. Some opportunities are just too good to pass up.

Day Off

Yesterday I did something rare, self-indulgent and bad for me: I skipped both morning and evening treatments. (I did take a 1-1/2 mile walk, which was basically the only "good-for-me" thing I did all day.) What a treat! I probably should have used the time constructively, to accomplish some great task, but instead the it was used to completely sack out on the couch watching a Mad Men marathon. Say that 10 times fast!

Joe made me promise that it would be the only time I'd skip a treatment all week, which I readily agreed to. From time to time I'll take the evening session off if we have plans or have had an especially busy day, but skipping both morning and evening is as rare as a blue moon, for good reason. Omitting a neb or vest session here or there isn't going to kill me, the same way not brushing your teeth one evening isn't going to cause all your teeth to fall out, but getting into the habit of not brushing isn't a good path to go down. Same with nebs and vesting: one missed treatment does not a habit make, but it is a slippery slope. Aaah, the freedom! For that reason I try to avoid skipping more than 2 per week. Two out of 14 isn't horrible, and that is a worst-case-scenario; ideally I have a 100% compliance rate. Although I probably won't miss 2 in a day for another year, I can look back on the sweet laziness of yesterday until that next time I have a day off.

Pair Four

This pair is my favorite so far. The yarn is soft, not too stretchy and is a delicious mint color. The lace pattern was a challenge, but once I got the hang of it wasn't difficult. The fit on this pair is the best, also. My only complaint is that the leg part could have been a bit longer; I did have extra yarn but wasn't sure I would have enough to complete the foot if I knit them further up the ankle.

My next pair is going to be in a pink multi-color using the same pattern (lacy days clouds in Knit Socks!) and I will do an extra inch on the leg. The past 2 Christmases were Years of the Slipper; quite possibly the Christmas of 2011 will be the Year of the Sock.

Felted slippers ready to be wrapped as Christmas gifts.

Not Just One Fork

"Another turning point, a fork stuck in the road. Life grabs you by the wrist, directs you where to go" - Green Day

On this last day of 2010 it's fun to reflect upon the past year and there is always the temptation to put a label on it as if we were able to qualify it as good or bad. There are good events and bad events; scary, satisfying and joyful events, all of which make up each moment, day, month and year in our lives. How can anyone term a moment, month or year "bad" or "good"? Each moment simply is.

We are offered many amazing opportunities on a day to day basis and I am incredibly lucky to be able to take advantage of so much life has to offer. Everyone has limitations; some are mental, others physical, monetary or time-based. The trick is to learn how to work around the things that limit us and capitalize on the areas we are able to explore. I may not be capable of being as active as I would like to be, but I'm dedicating this next phase in my life to using my mind (what there is of it!) in different ways.

What to do? Learn another language? Study an interesting subject? At times I'm so overwhelmed with the possibilities I feel a bit paralyzed; there is an endless display of forks laid out before me and I'd like to go down each one. Maybe the biggest challenge for me is to choose which avenues to pursue and which to bypass, and not my physical limitations, after all.

Stretching

The first time my grandmother R held Wilson when he was but a week or so old she commented on the way he stretched as he slept, arched back and squirming: "that's how they grow", she said. I've always remembered that moment and her wisdom. I'm not sure if that really is how babies grow, by stretching, but it's a piece of old-time wisdom that makes much sense. How else to explain the miracle that is life, growth and change?

Even when we are finished physically growing, we can still stretch ourselves in order to grow. Having new experiences, trying new things, going out of our comfort zone and learning. Sometimes it is uncomfortable, for me anyway. How much easier it is to stick to the old, familiar, tried and true path. Yet there is something inside that prompts me to want to learn new things, no matter how uncomfortable it makes me. There is frustration at not mastering something immediately; it would be much easier to do something the way I've always done it. Yet the challenge beckons.

I've found it best for me to acknowledge the discomfort and frustration and push through it. Eventually, with practice, whatever it is I'm trying to master becomes easier and more familiar. The key is not to avoid new things because of the sensations they bring up. If I was to make a New Year's resolution, that would be it.

May 2011 be a year of stretching beyond old levels of comfort and full of new and exciting experiences.

Socks Appeal

The second pair of socks, which I'll hopefully finish up this weekend. I love the self-patterning yarn, it keeps things interesting because the pattern unfolds as I knit, I never really know what a given section is going to look like.

Yarn: Schoeller Stahl self-patterning sock yarn. Pattern: Classy slip-up on size 0 needles.

Giving Thanks

The Before....

Table set, flowers arranged, food prepared, waiting on the turkey to finish up and family to arrive.

And The After:

Great food contributed by everyone and nuclear family: Mom, Dad, Wilson, Joe, Scott, Carrie and Day. Thankfulness all in one room!

Reprieve

Everyone deserves a special treat on Thanksgiving, even Baby, the late-season squirrel pup who has cleverly figured out how to hop on to my "squirrel-proof" bird feeder. Normally I'd chase him off and re-apply the butter I put on top to deter him, but today he will be allowed to stuff himself like the rest of us.

Enjoy, Baby, for tomorrow you will be relegated to scrounging on the ground, like the rest of your kind!

The Importance of Being Earnest

As someone who is old enough to remember days before the internet and online communication, it's interesting to think about how dramatically things have changed. We now have access to each other 24/7; we can see what friends are doing at any given moment on FB or Twitter; research a topic at any hour of the day or night and get up-to-the-minute information on our bank accounts and stocks. We are able to look up friends we've lost touch with, find others who share similar interests and meet people from across the globe. The world is at our fingertips.

Written communication is now the norm. No longer do we need to sit down, put a pen to paper and drop it in the USPS mailbox. We don't even need to pick up the phone and speak directly to a person: for a short communication a text will suffice and letters have been replaced by emails.

With this ease of communication comes a host of problems. When things are put into writing much of the context is lost: there is no face-to-face interaction which gives a large part of meaning to the words that are said. Something that might obviously be a joke when told in person could come across as a nasty remark without the hand and facial gestures that would have accompanied a verbal exchange. Misinterpretation is easy when reading others' comments.

Another tendency is to put everything out there: every emotion, feeling, interaction. What used to be saved for a personal journal with an individual's most innermost and private thoughts is now published on the web for all to see. Is this healthy? Who's knows? I do think that because we're typing into a computer and not having a conversation and looking into another's eyes we tend to overshare and say things that might otherwise be saved for a private personal conversation.

I've also noticed that we don't hesitate to put into writing things we would never say to someone in a face-to-face conversation. It's much easier to be blunt and honest to the point of rudeness when you're not looking at the person you are "talking" to. Perhaps it's just because I am of the generation that is accustomed to communication prior to the internet that my skin is a bit thinner than those who grew up with this technology. It could be that in another 20 years everyone will be telling each other "like it is" and nobody will think much of it, and I just need to evolve with the times.

Personally, I'm going to try to make it a point to not say anything over the internet that I wouldn't say to someone in a face-to-face conversation. Call me old fashioned but I'd rather not have every detail of my life flapping in the wind for all to see, nor would I like to be someone who is blunt and inconsiderate of people's feelings by telling them things about themselves that they probably won't acknowledge anyway. Walking away is still a good option, even if it's a virtual walk-away by clicking the "close" button.

New Skill Set

I'm proud of my mom; she's someone who has, for the larger part of her life, not had any medical issues. I think she has done amazingly well in mastering the skill of how to navigate the medical system under challenging circumstances.

My parents are part of the generation which saw their own parents live out their lives only visiting a doctor if there was a dire issue: Broken bones, surgeries or a catastrophic illness. Most things either resolved on their own or the person died, simple as that. No routine screenings for colon cancer, no yearly pap smears or mammograms. It's no wonder the medical system can be difficult to navigate- many illnesses, tests and reasons to visit the doctor have come into being only in the past 40-50 years. My parents' generation has had no modeling for this aspect of their lives and are now having to set precedence for the rest of us.

Just knowing when to call the doctor is a challenge. What symptoms are concerning? What is normal, what's not? How does one find the best care for their particular situation? What makes a good doctor and how does a patient find one? None of this is taught to us and, unfortunately, it isn't something that comes naturally to most people.

Medicine is 75% science and 25% art, in my opinion. It's more than just looking at lab values, numbers, test results. It takes some creativity to weave all the information together with the information gleaned from the patient: how they are feeling, how their illness affects them, treatments that are going to fit in with their life. It's not a one-size-fits-all kind of thing. Two people may have the exact same diagnosis, but with very different presentations and treatment plans.

Over the past few years my mom has faced an increasing number of medical issues, which she has handled with grace and good humor. She's a medical challenge requiring numerous experts and specialists, all of whom really need to work together since one change in medication can cause disastrous results. The learning curve has been steep- it's not easy to go from a healthy, active person to someone who needs to see a number of doctors, sometimes on a weekly basis.

I'm so happy she has a good care team in place, with most of her doctors at one facility, which both my parents are truly impressed with. Cooperation seems to be the key there, and an effort is made to accommodate the patient. For example, if tests are ordered they are scheduled at the time of other appointments, saving the patient a trip back in.

It's never easy navigating a change in circumstances, especially in terms of health, but I feel confident that my mom is in very good hands and can add that she is a top-notch patient. Definitely one of the more challenging aspects of life to master!

Acupuncture Part Deux

The acupuncturist I see is located in the town next to mine, on a dead-end, narrow street in a home from the 1860s. Parking is non-existent so cars must be left on the street prior to turning onto the short road. As I walked down the street I saw 2 men standing outside the acupuncturist's home; one was holding a dog on a leash. I smiled as I approached and said hello.

The older of the 2 men asked why I was smiling and if I was there to be massaged or poked. Poked. He asked why. Did it help? Why was I going? In the past I might have felt put on the spot or even tongue-tied, but I honestly didn't mind his questions. I told him being poked was something I was open to and I wanted a complement to traditional medicine. Yes, I thought it did help. This was my second appointment and I probably wouldn't have come back if I didn't think I was going to benefit. He made some joke about needles being placed in my face to make me smile and I said "who knows?" as I knocked and entered into the office.

Office sounds like too formal of a word, though. The entryway is more like a comfortable foyer with nice scents, soft music and 2 low chairs. Shoes are taken off. Tammy led me into a second treatment room, this one different but just as lovely as the one I was in last time. We discussed how I have been feeling since my first session. I gave her a list of my medications, something I had forgotten last time. We reviewed them together; she asked quite a few questions and explained my medical problems from an Eastern perspective.

The table was just as inviting and comfortable as the one in the other room. Needles were first placed on the back side of my body and left for 20 minutes. About half way through the time I felt an urge to lower my shoulders, a very natural feeling. I was in a deeply relaxed state and hovered just above sleep while remaining aware of my breath and the music.

Flip over and then the front with another 20 minute rest. This time I felt a clear sensation of my sinuses opening up. Very cool! I hadn't been having any pain or pressure but they felt much more open, as if there was a lot more air moving through them. There was some post-nasal drip following this sensation.

At the end of the session I was again left with a sense of peace and well-being. I'm not sure whether it's simply the amount of time gone by that has helped my acceptance of the new medical issues or if the acupuncture is somehow contributing. I'm just happy I feel more at peace with things. Tammy mentioned she feels that I'm following my true path and that the universe wants me to be around for a good while. Now that is a diagnosis I like!

My next appointment will be in 3 weeks because of the Thanksgiving holiday and already I'm looking forward to it.