Finally--the Rheumatologist 5/16/2017

The picture doesn't have anything to do with the post, it just makes me smile to see Grayson!

Back at the end of March when I was diagnosed with vasculitis, I was referred by the treating nephrologist (kidney doctor) to a rheumatologist.  I wasn't crazy about the guy he recommended, so I found another one that I liked, and made an appointment. The soonest I could get in was May 16th. I looked forward to that appointment with great eagerness, because, while the nephrologist could treat me for my failing kidneys, the rheumatologist could prescribe the best treatment for the actual vasculitis condition. BUT!!! On May 11th, I got a call from the doc's office with whom I had the appointment for the 16th, telling me he was cancelling all new patient appointments and moving them out to early July. JULY!!!!!! After making calls to several other rheumatologists, I found that the news from them was even worse: either they didn't take my insurance, or they were now booking out to the end of July. In desperation, I called the original referral, and he squeezed me in for today, a blessing.

While I can't say I''m thrilled with the doctor, I am greatly relieved that I am now on a course that will get me the drug I need to treat the vasculitis.

That drug is an IV infusion, given once a week for 4 hours over 4 weeks (at least that is what I gathered from my visit today). If  it can knock down this condition, one month of nastiness is a small price to pay.

Here's hoping that my upcoming blood work shows that my kidneys are continuing to improve, and that my anemia is receding! I see an RV trip in my future.....

Gym again! 4/29/2017

I have decided that wearing a patch on one eye is more disconcerting than seeing double, so I didn't wear it at all today, and it felt better. Seeing double is better than losing depth perception.
For the first time since December, I went to the gym with Ray. I did .4 mile (woo-hoo! --gotta work back up to at least 10 times that!) on the treadmill, and did some recumbent bike, stretching, and a few upper body weights.
The free weights are hard, because I can only hold them with 2 fingers of my left hand-- my right hand is OK. I feel so pathetic hoisting 3# weights. But, as the saying goes,  a trip of 1000 miles starts with a few steps. Ray monitors my form as I lift.
I even went in the pool today--it felt great! pix at https://goo.gl/photos/4rjXhdSmXYpH6hA56. I'm still losing weight (the vasculitis) and look like a stick (or as Larry would call me "Bones"). I feel like I'm always eating (thanks Prednisone)...
Anyway, I've got to say that it feels good to be getting out again...

Another bump in the road 4/21/2017

I haven't posted here in a while because our travels have been limited. The long and short of it is that I've had some health issues. Back in December 2016, I started to feel tired and lacked an appetite. There were a couple of times when I almost passed out just to stand. A trip to the ER in early January confirmed that I had a blood clot in each lung. Yikes! Where'd they come from? There was no ostensible reason for their appearance. Prior to the PE (pulmonary embolisms), I was walking 4 miles a day at a 4 + mph clip. Post-PE, I was a Tim Conway "Old Man" clone--(https://www.youtube.com/watch?v=z-QqmJimv_U), walking in a shuffle!

So for the first 3 months of 2017, the $64,000 question was where'd the PE come from? I bounced from one specialty doctor to another,  none of whom seemed to have an answer. And in the meantime, I was developing a compendium of seemingly unrelated symptoms: My hands were frequently numb, my feet had shooting pains, my stomach felt awful, and I was losing weight. I was anemic, my sinuses were always clogged, I had night sweats... What the hell????? Towards the end of March, in the evening, I mentioned to Ray that all of a sudden I was seeing double. I decided that maybe I was just tired and would go to bed and that in the morning I would be better. Not so much. With the double vision persisting in the morning, we trucked over to the ER, where after a battery of tests and blood work, I was admitted to the hospital, because it appeared that my kidneys were in failure. (Holy crap!!) Several days, tests, (renal biopsy) and blood tests later, the answer became apparent to the doctors. I have vasculitis. 

Vasculitis is a really screwy "condition" where inflammation can be present in the entire body.  My version (there are several) affects the upper (sinuses and nose), and lower (lungs), respiratory system and frequently involves the kidneys, lungs, eyes, ears, throat, skin and other body organs.  For unclear reasons, blood vessels in affected areas may become inflamed, and clusters of certain cells  may occur. Back in the 1970s, this was almost always fatal. But God is good, and there are now treatments that can put me in remission. I am now taking Prednisone, and soon will get chemo infusions of an auto-immune drug.

I still see double and my left hand doesn't work very well, but otherwise, I'm feeling better. I can walk better as the PE resolves (I can walk 1/4 mile) I'm the lightest I've been since my 20s. What a crappy way to lose weight! (I don't recommend it!!!) Hopefully, Ray and I will be back on the road in our RV very soon!!

Visiting an old friend 10/25/2016

500+ mum flowers all from 1 plant, and on 1 stem!

Whenever we're in the neighborhood (within 50-100 miles), we take the opportunity to stop in to Longwood Gardens in Kennett Square, PA (just north of Wilmington, DE). Every season, every year is different and a sensory treat. This year, we had looked forward to seeing a somewhat revised version of a nighttime light and sound show here that we had seen twice last year. Unfortunately, we discovered that the light show was only offered from Wednesday through Sunday, and we were visiting on Monday. But this was the start of Longwood's Chrysanthemum Festival in the conservatories, and we had never seen that, so we went anyway. Wow! More than 17,000 chrysanthemum plants were grown into ball, spiral, column, and pagoda shapes, and other forms as well. The amazing thing is that these forms are all trained from single stems! Longwood has one of the oldest chrysanthemum collections in North America, consisting of 230 different types. Since we were there early in the festival run, many of the plants were not in full bloom, and the 1000 + bloom chrysanthemum (on 1 stem in ball form) had not yet been put in place. It was going to be delivered from the greenhouse on the next day.

While in the Conservatories, we stopped in to see the fabulous Orchid Room, the Acacia Passageway, the fern wall room and the Chrysanthemum Bonsai (you have to see them to believe them).

One Chrysanthemum plant  that has been wrapped around a column. We were told it would be in full bloom within a week or 2.

Outside, we took a few hours to stroll among the trees, which are for us some of the most interesting features of Longwood Gardens, home to many National

and State Champion trees (the largest of their species). It is such a blessing to be able to walk among these perfect giants in the quiet of such a beautiful setting.

More photos here: https://goo.gl/photos/Vqj8g5bCyN5kVFm29

Minnewaska State Park 10/25/2016

Although the day was blustery and threatening to rain, we headed to Minnewaska State Park in the Shawangunk Range of the Catskills, with the goal of hiking to Sam's Point and the Ice Caves. Sam's Point is an overlook of thOn this day, the mountains were in peak fall color, and gave a spectacular display. From Sam's Point, we continued on up Ice Cave Road to the Ice Cave Trail. we had done this trail a few years ago and toroughly enjoyed it. This time, the road was lined with blueberry bushes in bright red fall foliage. In April of this year, there had been a 2000 acre fire that destroyed much of the tree cover here.. But the fire allowed the blueberries to thrive in the increased sunshine, resulting in carpets of red on both sides of the road. Gorgeous! The ice caves trail is an easy hike that takes you through a rock fall that created caves along the side of the mountain. Although the trail is very narrow and steep in places, it is a fun walk.

Here are some more pictures: https://goo.gl/photos/AAHS8Bgopr2P6SHt8

NY--Walk across the Hudson and Storm King 10/25/2016

I'm so glad we decided to come back north in October. By the time we got here, all the foliage was at

View from the Walkway: The Mid-Hudson Bridge

peak color, providing us the experience we would never have had this year if we had stayed home.
Since we had never done the walk across the Hudson, we headed there first. The Walk across the Hudson is a former railroad bridge that has been converted to a walking/biking trail. The bridge runs between Highland and Poughkeepsie NY and offers fabulous views north and south. Another day in the 70s made for a delightful stroll.

Pictures are here: https://goo.gl/photos/vXYDm33DEBYaX4Xu9

Alternative Landscape Components

We then headed over to Storm King Art Center, an open air museum in Mountainville, NY. It purportedly has the largest collection of contemporary outdoor sculptures in the US. It is about an hour drive north of NYC and sits on 500 acres. The sculptures are situated in locations all around the landscape: some in the woods, some on hills, some in open grassy areas, and all situated exactly per the artist's wishes. Although the landscape looks natural, each installation was carefully crafted according to the wishes of each artist. Truthfully, my taste and understanding of art had me scratching my head at some of the works. One of those was a piece called "Alternative Landscape Components", trees, rocks, and bushes made of plastic pipes, and steel drums.

In the visitor center, we experienced the Dennis Oppenheim exhibition "Terrestrial Studio", which included a piece called "Two Jumps for Dead Dog Creek", an installation of 2 x 4s and sand

Two Jumps...

imprinted with footprints. I may be obtuse, but this does not compute as art, unless art is whatever the artist says it is. Hey, at the MOMA in NYC, we saw the iconic blank framed canvas. Brilliant art, or big joke? In another room of the center museum, a video screen showed a video recording of Mr. Oppenheim walking in the woods and attaching sticks and brush to his body. Title of the piece was "Toward Becoming a Scarecrow". Yaaaaaaaaaawwwn.

But many other works were interesting. "Sea Change", 2 curving stainless steel poles that turn slowly in opposite directions, was mesmerizing. Another work, (title unknown) was composed of 3 giant frames mounted on 10-12 foot high poles. When you lie on the ground under each piece, the sky is the framed piece of art.

There are so many monumental sculptures, it's hard to see them all as you wander throughout the Storm King property. It's definitely worth a visit.

There are more pictures here: https://goo.gl/photos/3zP1ckEh6QWojphCA

Short trip north--Smokies 10/25/2016

We left Florida on the 10th on a little jaunt north to see family and friends, and get a taste of autumn. Mission accomplished! Our first stop was Smoky Mountain National Park. While the park was not at peak for autumn color, it was beautiful as usual. Mountain ash had lost their leaves and were sporting large clusters of bright red berries. The skies were bright blue and temps were in the 70s, and the hiking was fabulous. We walked up Clingman's Dome and then took the hike to Andrews Bald, the highest grassy bald in Smoky Mountain National Park, and a ridge that offers amazing views of the mountains. We stayed in a campground in Pigeon Forge, TN. Pigeon Forge, like Gatlinburg is a succession of dinner theaters, restaurants, gas stations, and every national chain establishment ever established. (It is also the home of Dollywood, and is Dolly Parton's home town.) Driving down the main drag in town, you pass, in rapid succession, Wonderworks, The Titanic Museum, Hatfields and McCoys show, Hollywood Wax Museum, Dixie Stampede, Biblical Times, etc. etc...

Love the mountains, Pigeon Forge and Gatlinburg--not so much. Traffic is horrendous.

Here are some photos we took on our visit there.