What a Lucky Person I Am

As I was leaving the hospital after the last of 3 medical appointments I've had this week I felt a huge wave of gratitude wash over me. It wasn't the weather- cold and pouring rain; nor the traffic which was stop and go all the way home. It might have been the chicken dinner that was waiting for us which cooked in the crock pot while I was out, but I'm fairly certain it was the fact that I have such awesome doctors.

Cardiology was first on Monday. They were a tad concerned because my blood pressure was on the low side, something that was the norm until the past 18 months. I was instructed to lower my blood pressure medication if I had dizziness or if my BP is consistently below 100 systolic. Otherwise, they are very pleased with how I am doing and encouraged me to keep up with the exercise and yoga.

Next I went to the CF clinic. Amazingly, my PFTs weren't down as much as I thought they might be, which was great news. My physician thought that there might be some residual systemic inflammatory response after my root canal/extraction adventure and that made a lot of sense. In addition, it's allergy season for me on top of the fact that I have let myself get run down over the past several weeks. Ten days of Levoquin and a month of inhaled antibiotic with more rest and exercise. I left with my instructions feeling a huge sense of relief that I wouldn't need intravenous antibiotics. Whew!

The third, and final, appointment was with my PH doctor. He'd like to try me on a once a day anti-PH medication instead of the 3xday pills that I'm currently on. Popping an extra couple pills three times a day isn't a big deal in the scheme of things, but the fact of the matter is that it's a challenge for me to remember that mid-day dose. Taking the pills with meals doesn't help me much because I often eat 4-5 times a day and don't stick to a 3-meal a day schedule. I did  buy a medication alarm which helps tremendously, as long as I'm within earshot.

So, one dose per day with the same (or possibly better) effects will be a huge plus. The down side is that there can be more side effects, but thankfully they are short-lived for the most part. I've had some muscle/joint aches on the increased dose but as predicted they did resolve within 2 weeks. There isn't any official data on how this medication works compared to my current one, but both the doctor and nurse thought that people tended to notice more benefit and did better on it. Sign me up! It will take several weeks to get insurance approval and receive the medication from my mail order pharmacy, but at least things are underway and I should have it by mid-November.

The doctor mentioned that there are several more CF patients who have been referred to him in the past 6 months, confirming his suspicion that this type of PH is indeed linked somehow to CF. This is an area that will need to be explored and studied and is certainly an area of CF medicine which will be expanding in the future as the population ages.

My feeling of extreme gratitude on the drive home was because my doctors (all 3 of them!) and I were able to figure out what was going on and - the best part- are able to treat it. Yes, I still need oxygen for strenuous activity, but for routine things and just strolling around I'm able to get by without it.  If not for this dream team of doctors and their (and my) persistence I might have continued to decline and nobody would have thought it extraordinary- after all CF and shortness of breath in a 46 year old- not a huge shocker.  I know there have been patients who came before me who never had an explanation for a sudden decline. I am incredibly thankful to have been given my life back and to have an answer to my sudden change in health. I am very lucky indeed.

Cold Cream Recipe

Yet another home made recipe I want to hang on to and I know if I put it here I'll easily be able to put my hands on it when I want it. Not that I'll need to make it again for quite some time, mind you, but it's always good to keep it in a safe place.

Rose Water Cold Cream


0.5 oz stearic acid
0.5 oz palm oil
4 oz. sweet almond oil
rose hydrosol (rosewater)

Melt hard the oils and combine with almond oil and rose hydrosol. Stick blend until combined, allow to cool and pour into jar. Great for removing makeup!

Cleaning House

Fall seems a great time to make changes in life. I think the Jewish calendar is definitely on to something with this being their New Year. There's something intuitive about nature and the gardens closing up shop, setting in for the winter months of hibernation. Spring brings freshness and renewal, but fall is a time for clearing out and paring down.

Mother nature assisted us this past week, whether we wanted it or not, by surprising us with a 5.5" rain storm - all in a matter of 3 hours. The sump pump we have in our basement was incapable of keeping up and we accumulated 9" of water in our basement and garage, a first in the 20 years we have been in this house. Sure, there's been an inch of water after a huge snow melt or week of rain, but it was really bizarre to see things actually floating around when I descended the basement stairs.

 I should have known something was wrong even before I went down there; Gracie was head-butting my leg while I was washing up in the upstairs bathroom, something she never does. Both she and Millie were quite perturbed at all the water, so much that one of their litter boxes was afloat.


We were very fortunate that the sump was able to remove most of the water within a few hours; the rest was able to be mopped up with towels wrung into a bucket and emptied outside. Fans and the dehumidifier took care of the dampness over the next few days. Amazingly we didn't lose any major appliances- the washer/drier/furnace all worked after the water receded. The things we lost were just things we were storing - mostly because we could - some old doors, screens, carpeting and the like, all of which was tossed on trash day.


Will we miss any of it? I doubt it. None of it was being used and we probably would have gotten rid of it years ago had we not had the storage space in the basement. There may come a time in the future when we'll say: "oh, too bad we don't have such-and-such, it would have come in handy right now" but it really isn't a practical way to live life, hanging on to things "just in case". Maybe this was Mother Nature's way of reminding us that it's better to let things go and not hang on to stuff for which we have no need at the present moment.


The basement does look a lot better without all the junk laying around and it's nice to be a bit less cluttered. In the next couple weeks I'm hoping to do more work down there, getting rid of things we don't use (unless they are things Wilson will need when he sets up house) and donating them. That way, if and when we have another reminder from Mother Nature we'll already be prepared.

To Market, to Market

The day couldn't have been any more beautiful; when we arrived at 7:30 the air was chilly but it soon warmed up with the sun on our backs and by noon we were perspiring. The weathermen had predicted 80 but it was difficult to believe when the previous day had been only 60.

This was the first farmer's market we had ever attended and it was a lot of fun. The traffic seemed a bit lighter than usual but it may have been because we were tucked over in a corner next to the tennis courts. We were, however, placed between a highly successful bakery (the aromas were intoxicating!) and a jam/preserve-maker. We bought a sticky bun and a loaf of olive bread from the bakery, both of which were amazing.

Sales were sporadic but good-enough, and it was fun to see some friends stop by. All in all, a good (but tiring) four hours. I'm looking forward to the next one in 2 weeks! Off to make some more soap......

Last Piece to the Puzzle

During the painting process we ended up shifting some of the furniture around, which left a space next to the fireplace. I knew exactly, in my mind, what size/style of chair I wanted to put there, but it was a matter of waiting for the right situation to come along.

Then, a post on Craigslist: free chair, the next town over. I quickly replied and somehow managed to shove it into the trunk of my little hatchback. Eventually, it will get new upholstery, but for now, it's exactly what I was looking for!

Finally we have enough seating in our living room to have company. C'mon over!