North at a snail's pace 9/8/2017

I4 Traffic--Woohoo!!

For the last 2 months we've been planning to travel once I could dispense with weekly, biweekly and even monthly doctors' appointments. We cleared the month of September with the idea that we would head north to visit with friends and visit some interesting spots on the way. What we hadn't counted on was that our departure date would coincide with "evacuation days" from Hurricane Irma for the states of FL, GA, and SC.

We packed up the RV and headed out at what for us was an early departure: 9:15 a.m. Our destination for the day was Charleston, SC where we had a campground reservation for a few days. We were very pleasantly surprised to find that I4 through Orlando was a breeze to navigate--usually, it's a slow slog through heavy traffic as it inches through the city. Yesterday, we were able to keep up a steady 55 mph. Wow--COOL! That feeling of euphoria soon dissipated as we approached I95, as we came up against the wall of FL residents that were fleeing the state ahead of Irma. For 280 miles, we endured constant stop and go traffic that should have taken about 4 1/4 hours, but actually took 7 hours. To say that Ray's blood pressure was extremely elevated would be an understatement. To make matters worse, we ran into a swarm of lovebugs that were plastered on the front of the RV when we arrived at the campground. It wasn't as bad as the last time, but still not great. That was the worst drive we have ever taken--and that's saying a lot, since we have driven thousands of miles.

When we finally arrived at the campground, we were told that they would only accept payment for one night, since they were evacuating on Saturday a.m., and were going to evaluate whether they would allow people to stay tonight (Friday) in the morning. Charleston is expecting a significant storm surge.

So where we go today, tomorrow and for the next several days will be completely determined by the path that Irma  is expected to take. So we'll be watching the forecasts.

Savannah History 7/31/2017

Just after we arrived at our campsite yesterday, I stepped out of the RV to check on our position relative to utilities. (It is important to make sure that the water, sewer and electric site connections are reasonably close to the RV connections.) Within a minute of my exit, my feet felt like they were on fire. I looked down and  then saw the problem: a fire ant colony occupied the corner edge of the concrete pad on which our picnic table rests. Fortunately (??!!) I only got about 15 bites on my feet. A call to the campground office brought someone who doused the area with ant killer.

Today, after our usual leisurely morning, we set off for Savannah. Our first stop was the Owens-Thomas house, an elegant residence built over a 4 year period and finished in 1820. Our tour guide highlighted many of the home's unique features like an incredible trompe l'oeil  ceiling in the sitting room, a beautiful geometric design amber window in the dining room,

Owens-Thomas House: The design in the wall above the table is cut into the wall and faced
with amber glass to allow more light into the room. The effect is stunning.
The table below was made for the space and is original to the house. 

and brass ornamented stair rails. This home had running water and flush toilets in 1820! We thoroughly enjoyed this tour.

Our next stop was Telfair Academy, within walking distance of the Owens house. It is a former mansion (across the street from the birth home of Juliet Lowe, the founder of the Girl Scouts), now an art museum. It was built 1818-1819.  We were fortunate to have the docent there all to ourselves. She gave us a personalized historical tour of the house/museum. This was originally a family townhouse that became a free art museum  in 1886, one of the first 10 art museums in America. There are some unusually shaped room here: an octagonal drawing room, a round-ended dining room, and a long drawing room with rounded ends.

Next up was the Jepson Center, a contemporary art museum across the street from Telfair Academy and opened in 2006. I must confess, I am not one who "gets" much of contemporary art, even with

the explanations of the artists' intent.Much of his art leaves me cold: a painting of a parquet floor, an installation of multiple TVs running videos of a woman expressing emotion, paint splashed on a canvas etc, etc, etc.

From Jepson, we headed back to the RV for a glass of wine (now

permitted for me now that my kidneys are behaving well), as we relaxed on a perfect evening.

Fort Frederica 7/30/2017

Heading north towards Savannah, we stopped at Fort Frederica National Monument on St. Simon's Island, a place that preserves the archaeological remnants of a fort and town built by James Oglethorpe between 1736 and 1748 to protect the southern boundary of the British colony of Georgia from Spanish raids. In 1742, the British successfully repulsed the Spanish from invading the island. From then on Spain ceased to be a threat in the area. By 1758 Fort Frederica had been mostly abandoned. What is left of the fort has been excavated and marked for visitors to explore.

Since we stopped here on our way to our campsite in Hardeeville, SC, we drove to St. Simon's Island

Street in St. Simon's Island

in the RV.  Like Jekyll Island, the streets are lined with old gnarly live oaks that create a living tunnel through which to drive. While it is truly lovely, the tree trunks and branches looked to be very close to the street and very low-hanging, making the drive to the fort in the 12-foot high RV an interesting one.

As usual, the National Park Service has done a wonderful job laying out the Fort's history and explaining its importance. We spent several hours strolling the grounds and learning about the Fort and its people. We spoke with a historic "interpreter" dressed as a colonist of the Fort's time period, who showed us many of the rudimentary but useful tools the colonists used in their daily lives there.
We found her inside a thatch hut, a common first dwelling at the fort when it was settled. As we were

talking, we heard a rattling from the palmetto leaf roof of the hut, that turned out to be a swarm of hornets. This was probably not an uncommon occurrence, even back in the 1730s... The woman was dressed in a long dress and hat that were typical of the time period. With temps in the high 80s and low 90s, with high humidity, I asked her if her garb was uncomfortable. She remarked that she was "soaked".  How easy it is to forget the trials and tribulations our forbears went through to settle this country.  More photos here.

We thoroughly enjoyed our time here, and then set out for our campsite in SC.

Just a little adventure: Jekyll Island 7/30/2017

Faced with the prospect of a couple of weeks without a doctor's visit or test, we decided to set out on a little RV trip.

Our first stop was Jekyll Island, off the coast of Georgia. The island was developed in the late 19th and early 20th centuries for private vacation homes of wealthy American businessmen and was evacuated during World War II by order of the US government. In 1947 the state of Georgia acquired all the property, for security and preservation.

We weren't prepared for how absolutely scenic the island is. Huge live oaks dominate the island, and line the streets, arching over them. Dripping with spanish moss, they give the island a lovely "southern country" feel. If you didn't know it, you might not think that this is an island off the Atlantic coast.  Even though Jekyll is a state park, because of its unique origins, there are private homes here, most of which are located on the island's interior.  From a conversation with a few of the island residents, we learned that all the land is leased from the state.

We were surprised to discover that the beaches were quite muddy. The water  at the southern end of the island (Glory Beach) was cloudy with sand. And the beach at Great Dunes was fouled with what looked like dirt. When we emerged from the water there, our lower legs were covered in dark brown crud. Yuk!

The bike paths that circle and criss-cross the island look like a great way to explore when the weather is cooler.

The power of personal contact 7/6/2017

I had a regularly scheduled follow-up appointment with the rheumatologist yesterday, which I used to discuss the issue of continued care without Medicare's final decree regarding payment for services. My rheumatolgist doc (RD) told me that there are strict Medicare prohibitions to taking money from Medicare  patients while a claim is being handled, and severe penalties for fraud. We had a good discussion regarding the possibility of having my hematologist take over infusions, and follow-up care. After all was said and done, he agreed to continue rituxan infusions, with the proviso that if, for some reason Medicare denied coverage, he would bill me. (He couldn't have made that decision a week ago???) At any rate, I'm not sure whether my considerable sales skills 😉 convinced him, or whether I just appeared incredibly pathetic, but he agreed to continue infusions this week and next.

I am also elated that my prednisone dosage will be substantially decreased over the next several weeks.

I see an RV trip in our future....

And the hits just keep on coming 6/29/2017

I saw the neuro-ophthalmologist this morning, with the thought that, based on our last visit, he would fit me for fresnel lens glasses if my eyes were not completely recovered from double vision.

His evaluation showed that....my eyes are worse. Fresnel lenses may be too heavy to wear. So he wants me to see another doctor in his office for evaluation for surgery. Unfortunately, the soonest I can get an appointment is............... August 15th. After calling around to several other ophthalmologists who treat adult strabismus, this may be the best I can get. Other docs are scheduling into September and October.

So, barring some kind of miracle, I will be chauffeured around by Ray (or trapped in the house), watching TV with a patch, and seeing the world go by in double, at least until September.

Unbelievable 6/26/2017

I started Rituxan treatment (infusions) 2 weeks ago, with the regimen set at one infusion per week for 4 weeks. I had one on the 12th, and one on the 21st. Everything seemed to be moving along. I had minimal reactions to the drug. Then came the call from the Rheumatologist's office: it seems that they had screwed up the billing to Medicare and Medicare at first refused payment. So they were calling to cancel my next treatment until they got a promise of payment. I called their billing office to tell them that I would give them a check for $13K (the list price for the 2 treatments). They will not take it. I called Medicare to find out what the issue was, and was told that the provider has to contact them to find the correct billing code.

This morning, I called Genetech, the manufacturer of Rituxan to find out what, if any, ramifications there might be for changing the dosing schedule from the once a week schedule. They told me that clinical trials for this vasculitis were done based on once a week dosing, and that they did not have any data on anything else.

So, I have no more treatment until the Rheumatologist hears from Medicare. Unbelievable.

Counting the days 6/3/2017

I finally have a start date for chemo: June 12th. Each IV infusion will take 4 hours (the first one may take up to 6 hours) and I'll get 1 every week for 4 weeks. I'm actually counting the days til then, because this will hopefully be the beginning of some kind of remission from this disease. While some symptoms have abated with the prednisone, the vasculitis is progressing, and now the nerves in my right hand are getting numb and unresponsive, to match my left. Yikes! I also look forward to reducing my prednisone dosage. In addition to a bunch of other issues, it keeps me from sleeping more than 4 hours at a time.

On another positive development, in preparation for the infusions, I had a battery of 17 blood tests that showed that my kidney function has continued to improve by over 50% from when I was first diagnosed. Even my anemia seems to be resolving.  And next week I don't have even one doctor's appointment! Woo hoo!

I know better than to wish the days away, but the 12th can't come soon enough!

Disappointment--and more waiting 5/26/2017

Today's doctor of choice was the Neuro-Opthalmologist to whom I was referred by the Opthalmologist. My appointment (the soonest I could get) had me arriving at 7:40 a.m., after a drive of slightly more than an hour. No problem.

I had anticipated that this guy would test me and determine that what I needed was fresnel lens glasses (see previous post), prescribe them, and send me on my way. What actually happened is that he wants me to wait a month to see if my eyes improve, at which time, if they haven't, he will prescribe the glasses. It doesn't sound like a big deal, but it sure was to me. Another month of seeing 2 of everything. Another month of having to be driven around by Ray. Another month of watching TV with an eye patch...which I will do, and hone my patience skills. 

19 and Counting... 5/18/2017

Finally went to an Opthalmologist today to address the double vision issue. I see fine out of each eye individually, but when both eyes are open, I see two of everything at a distance. Close up, I see one image with both eyes, so at least I can read. I'd really love to be able to drive, so I'd like to get this cleared up. I had been hoping that vasculitis treatment would take care of the eye issue, but that may not happen. So today I went to a well-regarded opthalmologist to see what could be done.

After having my eyes dilated like a startled owl:

(see the likeness?--This was taken at least 2 hours after the exam...)

bright lights shone directly into my eyeballs, and multiple other tests, I finally met the esteemed doctor who essentially said that I need to see another specialist for a strabismus evaluation. This guy wants to look at the Ophthalmologist's clinical notes before he will agree to see me. If I am worthy, I will get an appointment with him. The probable outcome would be that I would get fresnel prism glasses similar to those Hillary Clinton wears (click to see a larger image):

So, the waiting continues. I'm still waiting to hear from the rheumatologist about timing for chemo. Oh--and the reference to 19 and counting is the number of doctors I have seen since coming to FL, most for the vasculitis issue (one is my dentist, though...)

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!!