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

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.

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?

Tuesday, September 28, 2010

Fixed up


This was definitely one of the most rewarding refinishes I've done to date. Although on the back of the domed case there is a broken area the rest of it came out beautifully. I'm not sure what type of wood the base is- the top is just a veneer but it did develop a nice rich color when treated with a bit of linseed oil.

The machine needed a couple parts to be functional and fortunately I was able to find a 1927 model 99 on Ebay. Once they were installed I took the machine for a test drive and was completely amazed that it sewed perfectly: no tension issues, just perfect, evenly spaced stitches. I was anticipating the need to bring it to a repair shop to work out any issues but evidently that isn't going to be necessary.

Talk about being built to last!

Friday, September 17, 2010

Fixer-upper

Although I have a beautiful, state of the art, sewing machine that Joe gave me for my 40th birthday, I've been coveting an old Singer for some time. I've been keeping my eyes open at garage sales and flea markets for a Featherweight: a small, portable Singer that is a functional and durable antique, as well as a collector's item.

Along came a Freecycle posting offering up an old Singer. I responded, never expecting to be the first one, as most people receive updates to their cell phones and put their dibs in on good items quickly. Nevertheless, I was the first one and promptly drove to Lynn to pick up this old machine. The case is a bit banged up it will need rewiring. Otherwise, it is missing the knee lever that makes it go and the bobbin plate. No matter, I'm was still thrilled! This is my equivalent of an old car that needs to be fixed up. A labor of love.

After a bit of research online, I discovered it is from 1924, a model 99, one of which only 15,000 were made. Not a Featherweight, but the next best thing. It is portable and still functional but will need a knee lever and eventually new wires. I picked up a spare machine for parts on ebay and voila! She runs beautifully, even after 90 years.

I'm not intending to cast aside my beautiful Janome, which I love to sew with. It does everything I need it to do, and more. Technology has advanced to the point that I could never do any repairs on it, other than to remove the lint that accumulates around the bobbin. It's computerized and this Singer is more of a toy that I can play with. I can take it apart, see how it works, put it back together and it is no worse for the wear. No computer parts here!

Monday, September 6, 2010

Freeze Frame

Joe's weekend project, which turned out to be a much bigger deal than I anticipated, was to build me a cold frame for the garden. Hopefully I'll be able to put my seeds out much earlier next spring since they'll be protected. The top opens and can be propped up to allow for ventilation on warm days.

The best part of this project is that it is made from 100% scrap wood and repurposed objects. The windows were from our living room. The hinges from 2 doors we had removed and the rest was scrap lumber Joe had been saving. No longer am I allowed to be critical of his saving every little thing! Apparently, I just need to give him more projects in order to put his hoarded items to good use. Thanks, Honey!

Sunday, September 5, 2010

Miscellany



Dahlia from the garden. They seem much happier now that the heat wave is over. I know just how they feel.










Faux stone trough that I planted this morning with some sedum and hen-and-chicks. Faux is such an awesome word; who else but the French could think up such a classy way to say "fake"?

Little Miss Muffet




Little Miss Muffet sat on a tuffet
eating her curds and whey,
when along came a spider
who sat down beside her
and frightened Miss Muffet away!

Role reversal! As I was snapping a few photos of this big spider I accidentally nudged her web and she was the one frightened away. She hid, ironically enough, under the "welcome friends" sign we have on the back deck.

I wish the camera was able to capture her intricate web, it was huge and perfect. Sadly, the winds of tropical storm Earl demolished it and it appears Ms. Spider has moved on. She was in a great spot, bugs are always flying into that window.

Friday, September 3, 2010

PFO No Go

After enduring one of the most torturous tests ever invented by a sadistic doctor, I got a call with Dr P's opinion yesterday. The cardiac nurse said that the results aren't finalized, but since the he is going to be away for 10 days she didn't want to leave me hanging. Based on the preliminary results, he feels it would not have any benefit to repair my PFO. Disappointing, definitely, but I'll wait for the final results before totally bumming out. In the meantime, I'll call the pulmonary folks and get some more details.

So, it seems like R2D2 and my portable tanks are here to stay. I wonder if I can mosaic the O2 concentrator?

Thursday, September 2, 2010

Backlogged

I have had so many topics floating around in my head for the past couple weeks, but not the desire to sit down and actually write about any of them.

This photo is from our trip to Rangeley, some black and blueberry muffins we had one morning. Being fairly late in the season there were but a few blueberries, but oh! the blackberries. Combined they made a wonderful muffin. Nothing beat
s sitting at the counter, looking out the window with a steaming mug of coffee and a hot-from-the-oven muffin.


It just doesn't get much better than that!










Tuesday, August 24, 2010

BCE

BCE or Before Cat Era there was Dog Era. We had 2 during my growing-up years, both of which were poodles. My parents never liked cats; they walked on the cars in the driveway and left paw prints in addition to hiding under the shrubs next to the bird feeders. My only exposure to the neighbor's cat ended with a scratch when I decided to help kitty into my wading pool. How was I to know cats didn't like water?

CE

Shortly after setting out on my own, with an apartment and nobody but myself to consider, I came across a small kitten after work one evening in the middle of Chinatown. It scurried across the street and under a pile of boxes at the side of the road, waiting for trash day. Concerned it might be injured, I stopped to check that it was alright. Although I knew nothing about kittens, this one appeared to be rather young; no momma cat in sight. Ah, well, certainly it didn't belong to anybody, else it wouldn't be out at 1 am unsupervised. I'll just bring it home and drop it at the shelter in the morning so it can find a good home. The 7-11 was still open and I picked up a litter pan and some food to make sure kitty was taken care of until I could get to the shelter. I set her up in the bathroom with food, water and her own toilet and went to bed.

The next morning I could hear her mewing behind the bathroom door. She had curled up in the sink and gone to sleep but now she was ready to get out and explore her surroundings. So cute! How could I bring her to the shelter? I made the somewhat impulsive but never regretted decision to adopt this little stray. Her name was officially Tyler, after the street she was found on, but for her entire life, she was really just called Miss Kitty.

A quick trip to the vet revealed that Kitty was a She, about 6 weeks old and in seemingly good health. She had her shots and all the other routine things a cat needs. True, she wasn't the easiest pet to have: slightly feral (though I didn't know enough about cats at the time to realize that) and she never liked to be touched. I probably didn't socialize her enough when she was a kitten, working a crazy schedule and not knowing that cats, like all creatures, need a good bit of attention. Out the window with the myth that cats don't need interaction. True, they can survive without it, but they do much better with plenty of it. Lesson learned.

She moved 3 times with us, first when Joe and I got married, then to a second apartment and finally to our house. Sadly, she didn't live more than a couple years once we had our home, collapsing suddenly at 6 years old of a presumed heart ailment. She was a bit wild and very difficult for any vet to vaccinate, let alone examine, so she never had a proper physical. She had a short, but hopefully happy life with us. Surely, it must have been better than being a feral cat in Chinatown?

Once I got to know a cat on an intimate level I realized how complex and interesting they are. How affectionate, intelligent and personable. Yes, each one has a very unique personality. Shocking! More wary than dogs, it's hard for a casual observer to discern a cat's uniqueness.

After Miss Kitty's untimely demise Wilson and I made a trip to the shelter and adopted 2 adult cats, Benji and Charlotte. A year and a half later, a third joined the ranks when we brought Gomer home. Joe's only stipulation to the adoption was that the name given him at the shelter remain intact. The shelter was right-on, Gomer turned out to be a lovable, goofy, affectionate cat.

Benji was a gray long haired boy who was an alpha cat if there is such a thing. He had no tolerance for any other felines trespassing in his territory. He had a particularly scrappy summer when a white Tom moved in down the street. Numerous trips to the vet were required to repair his constantly injured ear; he didn't seem to come out on top of these fights and would pursue White Tom down the street if he caught a glimpse of him. Thankfully, Tom disappeared as suddenly as he arrived, but his memory remained in Benji's thereafter deformed ear.

Charlotte was a true lady. She loved being carried around the yard as I checked on the gardens. She'd sit contentedly in my arms and survey with me. She slept with me at night and had the loudest purr of any cat we've had to date. Both she and Benji were lap cats and would settle down with us in the evenings to watch television. Sadly, both are gone now, but they lived into ripe old age, for cats anyway. Benji was around 15 and Charlotte 18-ish. They are now resting in their favorite spots in the yard. Benji under the burning bush and Charlotte under the bench she used to love to sit on.

The girls, as we call them, came into the house as 8 week old kittens. Much wiser and with more time available, I was able to spend plenty of hours playing with Millie and Gracie during their formative youths. The effort paid off in that they are delightful, sweet, very social and love to be petted or played with.

Millie, it turns out, is the more adventurous of the two. She has been known to sneak outside if the opportunity presents. She's a terrific fly catcher, able to grab one in just a paw and eat it up with one swift motion. She will visit at night but won't sleep with us, preferring to come for some scratching and a snooze, then returning to play downstairs with Gracie.

Neither will sit on our laps on the couch in the evening, no amount of cajoling will entice them.

Gracie will, however, sit on my lap while I do my morning and evening treatments. She has a certain way she likes to be petted (right hand only on her head, left hand cradling her two back feet as she lies on her side or back). Any deviation from this preferred method results in getting kicked with 2 hind legs. I may not be brilliant, but I do catch on after a bit. Sometimes I wonder who is training whom?

Tuesday, August 10, 2010

Dirty, Pretty Things

The last time it rained enough that the garden didn't require hand watering was probably back in June, so the daily routine has been: cup of coffee, water and weed the garden, then pick whatever is ready to be harvested. Saturday it was our first eggplant. Last week there were the first cherry tomatoes and cucumbers. Today there are carrots!

The routine takes anywhere between 15-40 minutes, depending upon how much maintenance is needed. Admittedly, I enjoy lingering; seeing what has grown since the previous day and admiring the fruits (well, veggies) of my labor. Even on the most uncomfortable, humid days it's still a pleasure.

Wednesday, July 28, 2010

I Need A Spoon-full of Sugar

Although I hate to dwell on medical issues they are an inescapable part of my life, so I will include an update here. Just the facts, please, ma'am.

Let's see, where was I? Oh yes, the echocardiogram results of a PFO back in June. After consulting with a cardiac surgeon last week (the head of the department, I might add) it was determined that I could skip the lengthy and involved approval process for PFO closure because of my CF and hypoxia (low oxygen levels). Skip to the head of the class. The only drawback being that I would need one or possibly two additional medical procedures prior to being able to have the PFO repaired.

Medical test number one: TEE or trans-esophageal echocardiogram. Basically the same test I had back in June, but a bit more detailed than the previous echocardiogram. For this one they need to do the ultrasound from within your esophagus, which gives a much better picture of the heart structures. Sedation is used as most people tend to not enjoy having an ultrasound scope inserted down their throat, and because of my history of CF I'd need to have general anesthesia in case of the need for a quick intubation. They'd give me light anesthesia so I'd still be breathing on my own, but were ready to step in should there be any difficulties. Ready, set, probe!

The test was actually quite simple, I had a nice sleep and woke up feeling not too much worse for the wear, only a slight sore throat and fuzzy feeling in my head. I actually found it easier to recover from than the sedation they usually use for such procedures. The results came in yesterday and indeed, it is a PFO with a trace amount of blood shunting from one atrium to the other. Next stop: cardiac cath/pulmonary lab to verify how much of a shunt there is on exercise to see if that is the cause for my hypoxia. If it is, then the PFO will be closed. If not, they won't fix it and we'll need to do a bit more medical detective work.

Apparently the Level III Baird test is so popular there is a 3 month wait time to have it done. A date should be confirmed today and I'll be put on the waiting list in case there are any cancellations. Part of me wants to have it over with and the other part would like to put this off as long as possible.

Cardiac catheterization is a procedure where a small incision is made either in the groin or above another large vein and a catheter introduced up and into the right side of the heart. During the level III baird test, not only is there a cardiac catheterization, but also arterial monitoring of the blood to detect oxygen levels, usually done in the radial (wrist) artery. Neither of these aspects of the test sound like much fun to me, but the icing on the cake is that the patient is required to exercise while all this is going on. I would like to wish the physician and other staff the best of luck in advance for this one.

After the results are in from that I'll have a much better idea of the plan. If there is significant shunting from the right to left atrium causing less blood to pass through the lungs then they will go for the repair. There's a part of me that is wondering if all this is worth it. Using the oxygen isn't that bad... sure, it's inconvenient but I'm much more used to the odd looks people give me. Is it really worth going through all these unpleasant tests without a guarantee that this is the cause of my low oxygen saturation? I suppose it is, but I can't pretend I won't be disappointed if the level III baird doesn't yield some helpful information. Being poked, prodded and probed has to have some benefit, doesn't it?