Sunday, October 31, 2010

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.

Thursday, October 28, 2010


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.

Tuesday, October 26, 2010

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.

Sunday, October 24, 2010

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.

Saturday, October 23, 2010

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?