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.

Unchartered Territory

You're never too old to feel left out apparently- it's not just for awkward middle school moments! As a rule I don't usually feel like an outsider when amongst my friends, but lately I'm more aware of the rift. I'm not one to bring up medical issues unless asked, assuming that unless there is some invitation to share that people would rather not hear about it. That is just my style and I'm not about to change things at this stage in the game. Anyone who knows me well understands this, I figure.

I truly understand that it isn't always about me. Just because I have serious medical issues that nearly always trump whatever others have going on, doesn't mean that my problems are worse, per se. I'm empathetic (I hope!) and try never to say "oh yeah, you think that's bad? listen to this!" In all honesty, I'd much rather listen to friends' problems which I consider much more interesting my own. That being said, I am somewhat sensitive to the fact that there is frequently no inquiry into my health, what is going on for me even a "how are you feeling today?"

I've reached a point in my life where I'm not able to easily participate in many of the activities that others in my social circle find fun. It's more difficult to get around with the O2. I can't be as active and my energy is lower. I need to avoid smoke. I'm ready to go to sleep when, by most people's standards, the evening is just getting interesting.

So what's the answer? I don't want friends to have to alter plans in order to include me. Why should their social lives and fun be penalized because I can't keep up? So do I politely smile and say "no thanks" when invited, or would I rather that they didn't mention activities I can't be involved in at all? Not sure. It's easy for me to see that isolation and pulling away is the path of least resistance, being around others who can understand first hand what this feels like is much easier and more comfortable. I know many people who wrestle with this issue and have yet to come across a good answer to the question.

As with most things, a work in progress. Here ends my mental dump and sort.

Porcupine

From time to time I've considered acupuncture in the past, even making an appointment with a practitioner in Salem who came highly recommended. After having a brief chat with her on the phone I realized I didn't feel completely comfortable with her and I called back to cancel, never going through with it.

I was given the name of another practitioner by a trusted health care provider and this person sounded much more up my alley. I felt comfortable when we spoke on the phone and took a last minute cancellation opening (must be my week for that!) yesterday.

This acupuncturist has a MS in Oriental Medicine and has years of experience. A fluffy dog and petite kitty greeted me as I walked in the door. Oh yes, this feels right, nothing like animals to make me feel comfortable. She asked me question after question, wanting to understand my complex medical history as well as my home life, personality, beliefs and body. She explained how the acupuncture session would go and we got started.

The space was truly lovely and the first word that comes to mind is serene. Painted a soft spring green, the room was perfectly square with an open cupola in the ceiling with a window on each of the 4 sides. There were full length windows on 2 sides of the room with opaque shades which allowed privacy with lots of soft, natural light. A wind chime produced soft music from outside in the background of my favorite chanting CD, Eternal Om. The wall which provided backdrop for an Asian cabinet covered with Buddhist artifacts also had a large painting of a field of flowers in soft whites and blues. I could have stared at it for hours.

The table was similar to a massage table but had a warming pad on it and was like the most comfortable of beds: soft and cozy while still being supportive. I had needles placed in my legs, arms and back and some acupressure done on my shoulders, which made my legs extremely jumpy. This, she explained, was old wind leaving my body. Anybody who knows my sense of humor will envision how difficult it was for me not to make a play on words with that, but I restrained myself.

Half way through the session I was turned over and the process was repeated on the front of my body, face (!) and ears. The needles didn't hurt, but there was a slight sensation of tingling as they were inserted. She left the room for the last 15 minutes, allowing me to relax. From time to time I would become aware of a sensation of warmth or tingling in one or another of the needles, but for the most part I was completely unaware that they were there. After they were removed I was left with a feeling of peacefulness and deep relaxation.

Today, though I'm anxious to feel something - anything- different, I don't notice anything. We agreed to connect by phone to see how I felt and set up a treatment plan if I decide to continue. I didn't expect to wake up feeling cured of all my ills today, wanting to try this as a complement to my current treatment regime and medications. I'm interested in continuing to see if there is any benefit, even if it's just psychological. I figure at this point in my life, I can use all the help I can get! I'll continue to document future sessions as objectively as possible in order to mark my progress.

Cardio Workout

Today was my appointment with the cardiologist for a second opinion. What a long, strange trip this has been- starting last April when I failed a 6 minute walk test and was started on oxygen. The first cardiologist, Dr. P, interpreted the results of the level 3 Baird test completely differently than my pulmonologist. In fact, I preferred his interpretation: you're fine, just out of shape, that's why you are so short of breath. Try taking a baby aspirin each day and come back to see me in a couple years.

Whoa! Very different than what I was told by my CF doc: you have exercise-induced pulmonary artery hypertension as well as left ventricular failure. Easy to see why Dr P's diagnosis was preferable, no?

After hours of online research and asking questions of basically every medical professional I came across, I had the name of another cardiologist: Dr S. who runs the heart failure and transplant clinic at MGH. He conducted a study involving the level 3 Baird and cystic fibrosis patients several years ago which was published in the medical journal Chest. The down side is that he is extremely busy and difficult to get an appointment with. Needless to say, his secretary and I are now on a first name basis; I called at least once a week to try to get into a cancelled appointment slot. My persistence paid off and I snatched up today's opening.

Basically, he said he didn't have a clear picture of what is going on with me. I've stumped the best of the best! He was concerned about my blood pressure, especially when I exercise, when it topped out at 210/112, much higher than a normal person's. The pressure in my pulmonary capillaries is much higher than normal as well, 50, when it should be around 12. As if this wasn't enough, my left ventricle doesn't pump or relax properly and this in turn affects the right ventricle. Cardiomyopathy or heart failure. Oh, and a small PFO.

However, despite all the cardiac abnormalities, he doesn't think my shortness of breath is heart related; if it was, I wouldn't feel better using the oxygen. Not only do I feel better, but my O2 saturation is much higher when I use the oxygen. He's going to need to confer with my pulmonologist in order to discuss this and come up with a plan.

As frustrating as it is not to have a definite cause for what is going on at least I feel that I have the very best minds working together to figure it out. I suppose in the end it doesn't really matter whether the root cause is cardiac or pulmonary; my personal theory is that it is a combination of the two. In the meantime, I'll continue to use the oxygen for activity; I'll keep up with exercise, and (this is going to the the tough part!) cut down on my salt intake. I'll wait to hear back about anti-hypertensives and just keep on keepin' on.

Sock it to Me

Technically, 2010 has been the year of the slipper. Although I started in 12/09, I went a bit slipper-happy and made some 10 pairs of felted slippers, thus completely wearing out the fun in that particular pattern.

My goal for 2011 was going to be to learn to knit socks. I've always fancied handmade socks and since I mostly wear clogs, exposing my own, I thought it might be a fun thing to learn. Joe bought me a book on sock knitting and I ordered a bit of yarn. I was ready to go.

Then came the surprise middle-of-the-night admission. Whoa! Nothing was packed, no bag of things to keep me busy and sane. Once again, Joe to the rescue: he brought in my new book and the yarn and I went to town. Since I was only in for a week, I didn't finish the first pair I started, but I did one sock and 2/3 of the second. I finished them up during Sunday afternoon football and now Joe's piggies will be super-cozy. Amazing! They actually look like real socks!

Pattern: simple ribs with 1 skein Northampton jade size 2 needles.

Like a Hole in the Head

While walking by a garage sale today on the way to the post office we saw an old portable Singer sewing machine in excellent condition. The lady running the sale was friendly and I remarked how nice her machine was; she proceeded to tell me a bit about it and said she was asking $20, even offering to let me plug it in and try it out. Ah, that's ok, I have one already, I was just admiring. As we walked away, Joe whispered, "would you like it?"

It took me about 2 seconds. I thought it might be nice to have a case that is in perfect condition. Even after refinishing mine, there is still a large break in the domed case that I wasn't able to repair. I could refinish this one and swap out the machines. We walked back and paid for the machine, which we would pick up on our way home from the post office. It weighs 35 lbs.

Once home I tried out the machine and was instantly enamored: the bobbin is quite different than any other machine I've owned, a tiny shuttle. Unfortunately, it wouldn't sew, something in the mechanism was sticking and wouldn't allow the needle to complete its up and down cycle. A partial dis-assembly, some 3-in-1 oil, and a bit of tinkering with the upper and lower tensions and it sews like a dream. It's not as pretty as the 1924 model, a bit more utilitarian- without the gold scroll-work and fancy embossed plates- but a good, old machine nonetheless. A quick check on the serial number tells me it was made in 1951 in Elizabethport, NJ.

I took the machine out of the case and started in on refinishing the case; after the linseed oil/turps/stain dries I'll do the 3 coats of urethane. I needed this like a I need a hole in the head, but I have to say I really love the new machine. How could I not after Joe lugged it the 3 blocks home?