Sunday, October 31, 2010

40 Days of Thankfulness: Day Seventeen


Today I am thankful for my dog, Mimi.  She's a beautiful dog, sweet, loving and usually very mild-mannered, but she'll bark her head off whenever she hears someone in the driveway.

Tonight, she barked at potential trick-or-treaters and we have lots of candy left over.  :)

Thanks, Mimi!


Posted via email from Cushings Help

Saturday, October 30, 2010

40 Days of Thankfulness: Day Sixteen


Today I am thankful that the skunk already passed by when  I took Mimi out for a walk!

It's so not fair!  I can't smell lots of flowers or perfumes but I can smell a skunk blocks away.

Posted via email from Cushings Help

Friday, October 29, 2010

40 Days of Thankfulness: Day Fifteen


I hope I'm not jinxing myself but today I am thankful that I haven't had any migraines for a long time.

It's not "just" not having migraines, but the fact that, should I get one, there's nothing I can do about them anymore.

I used to get migraines quite often, a hormone thing probably.  I spent lots of hours in a completely dark room, blocking out sound, trying to keep my head from pounding.

There was a long period of time that I had a migraine 6 days out of the week for several weeks.  By accident, a friend asked me on a Monday if I had one that day and that started me thinking - why do I have them every day except Mondays?  I figured out that it wasn't a migraine at all but an allergy headache - I was allergic to the bath oil I was using Monday-Saturday.  I gave that to my Mom and those headaches went away.

I still often get allergy headaches.  Since my Cushing's transsphenoidal pituitary surgery, I can't smell things very well and I often don't know if there's a scent that is going to trigger an allergic reaction.  In church and elsewhere, my Mom will be my "Royal Sniffer" and if someone is wearing perfume or something scented, she'll let me know and we'll move to a new location.

There's a double whammy here - since my kidney cancer surgery my doctor won't let me take NSAIDs, asperin, Tylenol, any of the meds that might help a headache go away.  My only hope would be that coffee from Day Fourteen. And that's definitely not usually enough to get rid of one of these monsters.

So, I am very thankful that, for the moment, I am headache/migraine free!


Posted via email from Cushings Help

Wednesday, October 27, 2010

40 Days of Thankfulness: Day Fourteen


Today, and every day, I am thankful for coffee.  Without it, I would have a daily headache and I'd have even less energy than I have now.

I first started drinking coffee when I had my first job as a waitress at a Hayes-Bickford in Boston, MA.  This was a summer job.  A bunch of my college friends had gotten an apartment near Fenway Park in Boston and most of us were waitresses in various places.  Hayes-Bickford was marginally better than a dive. 

[[posterous-content:pid___2]]I was fortunate that I was the youngest waitress at that Hayes-Bickford, so I got the best tips. This was a l-o-n-g time ago - I'd get out of work sometime after midnight, take the Boston subway alone to our apartment, with an apron full of my tips, mostly in jangly change.  That could never happen any more!  Even without the money, I still wouldn't wander around the Boston Common area of Boston alone after midnight.

The food at HB wasn't so great.  Sometimes, a patron would order some type of meat and the chef would say we were out of it, to put gravy on whatever-we-had and tell the diner that it was what he had ordered.  We were usually out of a lot of things.

But the coffee was good and I learned to drink it, lots of it, and black, something I still do today.  If I could do the IV thing, I would!


Posted via email from Cushings Help

Sunday, October 24, 2010

40 Days of Thankfulness: Day Thirteen

Today I am thankful for my church choir.

I've had a long history with singing from the time I was a kid singing in the choir at my Dad's church.  In High School we had a great choir and it was the time before "political correctness" would have banned us from singing such wonderful classical music like Brahms' German Requiem.  In college, as a music major, there were choirs and when we finally got to our current home, I joined Sweet Adelines.

I was a member of Sweet Adelines for 10 years, before Cushing's robbed me of that particular pleasure.  SA takes  lot of energy between rehearsals, performances, competitions, travelling.  I just loved it but I couldn't keep up.

For a few years, I belonged to a local woman's group but even that got to be too much after a while.  There wasn't the travelling or the competitions but rehearsals and performances cut into that energy.

Last year, our choir director opened up the opportunity to sing for just the Christmas Cantata.  No long term committment and only half the rehearsal time for about 10 weeks.

I hadn't sung anywere outside my car for about 10 years but, with trepidation, I signed up.  Because of my bell-ringing and work with children's choirs, I knew most of the other choir members and that made it a LOT easier on shy-me.

Christmas came and singing with the choir and orchestra was just fantastic.  There was the invitation to stay, to become a part of the choir for good but I had my Cushing's Interviews on Thursday nights and I couldn't see how I could work all this in.

Last spring the choir sang How Lovely Is Thy Dwelling Place from Brahms' German Requiem and I was hooked.  How could I not join?

So, I moved the interviews to Wednesday nights and Thursdays are free for choir rehearsals.




Posted via email from Cushings Help

Out back on one of our last nice fall weekends

Saturday, October 23, 2010

40 Days of Thankfulness: Day Twelve


Today, I am thankful for Saturdays.  It' the one day of the week I don't have to be anywhere, do anything.  I can do webwork, if I want, but I don't have any deadlines. 

I never have doctor appointments on Saturdays, no medical testing.

No piano students.  I don't even talk to prospective students on Saturdays.

It's a day for maybe brunch, a trip to the farm, maybe a little TV, maybe (most assuredly!)  a nap.

Saturdays are family days, even though our family is smaller than it was.

Saturdays are always full of promise.

Off to see what today's promise is...

Posted via email from Cushings Help

Friday, October 22, 2010

40 Days of Thankfulness: Day Eleven

Today, I am thankful for Lisa.  Her photography studio ( ) held a Girls Night Out fundraiser which benefitted Cushing's Help.

Last night's raffle raised $600.00 and that will go a long way to keeping the message boards up and running for another year.

You, too, can be thankful for Lisa here.  :)




Posted via email from Cushings Help

Monday, October 18, 2010

40 Days of Thankfulness: Day Nine

I am so thankful for all my doctors but today I am thankful for Dr. Amir Al-Juburi who saved my life by removing my kidney cancer (renal cell carcinoma).

In 2006 I picked up my husband for a biopsy and took him to an outpatient surgical center. While I was there waiting for the biopsy to be completed, I started noticing blood in my urine and major abdominal cramps. I left messages for several of my doctors on what I should do. I finally decided to see my PCP after I got my husband home.

When Tom was done with his testing, his doctor took one look at me and asked if I wanted an ambulance. I said no, that I thought I could make it to the emergency room ok - Tom couldn't drive because of the anaesthetic they had given him. I barely made it to the ER and left the car with Tom to park. Tom's doctor followed us to the ER and became my new doctor.

When I was diagnosed in the ER with kidney cancer, Tom's doctor said that he could do the surgery but that he would recommend someone even more experienced, Dr. Amir Al-Juburi.

Dr. Amir Al-Juburi has been so kind to me, almost like a kindly grandfather might be, and he got rid of all 10 pounds of my kidney and cancer.

I owe him, the original doctor, and my Cushing's doctors (who will be featured later!), my life.

Posted via email from Cushings Help

Sunday, October 17, 2010

40 Days of Thankfulness: Day Eight

I called our son today, just to see how he was doing. I am thankful that he's doing so well for himself, has a good job, good friends, is a fine musician and that he's not afraid to say he loves his parents. :)

We love you, too!

Posted via email from Cushings Help

Saturday, October 16, 2010

Last beans of the season

40 Days of Thankfulness: Day Seven

Weight Watchers.

Yesterday, for the first time that I can ever remember, I bought size 12 pants. Even before Cushing's, I was bigger than this. Maybe it was just the company that makes them, cuts them more generously than others but still.

I've been a *bit* off-program since the summer but this will inspire me to get back with it.  I want to buy more 12s...and maybe 10s sometime.



Posted via email from Cushings Help

Thursday, October 14, 2010

Wednesday, October 13, 2010

40 Days of Thankfulness: Day Four

Today, I'm thankful for my "Cushie Car".

Since I started attending Cushing's events, I've always tried to rent a PT Cruiser. There's just been something about them that I liked.

A couple years ago, after my son was out of school, I was getting tired of driving the Mom-Carpool-Van everywhere. I think my mom was getting tired of stepping up into it, too. She doesn't drive anymore, so she relies on whatever vehicle I'm driving to get her to appointments. So, I was delighted when she offered to pay for part of it. She didn't realize it was going to be bright blue, though. I think she was thinking of navy or something more dignified.

Anyway, I had the car picked out, and the exact color I wanted and set off to the car dealership with my specs. They told me that the Cruiser didn't come in this shade of blue. I'm sure that they wanted to sell one of the colors they had on the lot.

I got back to them and told them that I found this car online and I could go get it myself. Suddenly the dealership was able to get it for me, too, so I won out. WooHoo.

I'm just loving this car. :)

From a Cushing's get-together in Columbus, OH, 2007, the yellow version :)

Posted via email from Cushings Help

Tuesday, October 12, 2010

40 Days of Thankfulness: Day Three

I am thankful today for our CSA farm, Great Country Farms.  We've been members there since our son was young, since 1995.  We just love being out in the country, picking whatever is available seasonally, having fresh fruits and vegges delivered.  The Zurschmeides are the nicest people you could ever want to meet, too.

From their website:

The goal of Great Country Farms is to offer a way for everyone to experience farm life and enjoy the benefits of its bounty.

Great Country Farms is a 200 acre working farm situated at the base of the Blue Ridge Mountains outside the village of Bluemont, VA. Great Country Farms offers produce as well as the farm experience to its customers. 

The Zurschmeide Family has been farming in Loudoun County for over 35 years and Great Country Farms was started by the second generation of  Zurschmeides in Loudoun in 1994. The farm started with a Community Supported Agriculture Program (CSA) which has grown over the years and delivers produce to homes as far as Alexandria and Arlington.   In 1996 and again in 2007, the Loudoun County Chamber of Commerce voted Great Country Farms, "Agribusiness of the Year" for its unique efforts to farm in a difficult climate through innovation, rather than selling out and growing houses.

We owe it all to Farmer Bob for instilling a love of farming in us. He still visits the farm regularly on weekends to continue that tradition for the new generation of farm visitors.  Be sure to look for him on your next visit. As our farm grows, we are thrilled to welcome the next generation of Zurschmeides in the fields, behind the counter, making Kettle Corn and as the Pumpkin Princess of course!

We are thrilled to still be a family farm in our growing county and welcome you to visit our farm, pick some produce, create some memories and begin your own farm adventure as part of our farm family.



Other pictures from one of my blogs.

Posted via email from Cushings Help

Monday, October 11, 2010

40 Days of Thankfulness: Day Two

I am thankful that today is Columbus Day and that it is a holiday where I live.  So, today is a "bonus day"!

I am thankful also that Columbus discovered this land making it possible for my Dad and grandmother to come here after my grandfather was killed in Peshawa, India during World War I.

Thanks, Christopher!


Posted via email from Cushings Help

Sunday, October 10, 2010

40 Days of Thankfulness: Day One


I am thankful, believe it or not, that I had Cushing's.  Mind you, I wouldn't want to have it now, although diagnoses and surgeries seem "easier" now. Having Cushing's taught me a lot, including how to stick up for myself, how to read medical books to learn more about my disease, how to do web design, how to navigate NIH.  It taught me patience, how to make phone calls.  It brought me a lot of new friends.

I am also thankful that people are becoming more empowered and participating in their own diagnoses, testing and treatment.  This have changed a lot since my diagnosis in 1983!

When I had my Cushing's over 20 years ago, I never thought that I would meet another Cushing's patient in real life or online. Back then, I'd never even been aware that there was anything like an "online". I'm so glad that people struggling with Cushing's today don't have to suffer anymore thinking that they're the only one who deals with this.

Because of my work on the websites - and, believe me it is a ton of work! - I have had the honor of meeting over a hundred other Cushies personally at local meetings, conferences, at NIH (the National Institutes of Health in Bethesda, MD where I had my final diagnosis and surgery). It occurred to me once that this is probably more than most endocrinologists will ever see in their entire career. I've also talked to countless others on the phone. Amazing for a "rare" disease!

I don't know what pushed me in 1983, how I got the confidence and self-empowerment to challenge these doctors and their non-diagnoses over the years.  I'm thankful that I didn't suffer any longer than I did and I'm glad that I have a role in helping others to find the medical help that they need.

Posted via email from Cushings Help

Saturday, October 9, 2010

40 Days of Thankfulness: Day Zero

I have decided to try Facebook's 40 Days of Thankfulness and I'm going to post all 40 days here since I know that it will auto-post to Facebook and my blogs.

More info about this can be found at!/event.php?eid=151092964927873&index=1

Although I have had several problems in my life (and who hasn't?), I'm sure I can come up with at least 40 things I'm thankful for. So starting tomorrow, I'll be posting them here.

Posted via email from Cushings Help

Friday, October 1, 2010

Apache Trail

We were on the Apache Trail today. Click on the cactus image above to view the whole album of pictures!


Old Apache Trail Tour - Superstition Wilderness by Tom Kollenborn

The Apache Trail's famous Circle Route begins and ends in Apache Junction, Arizona. This 120 mile scenic route is America's oldest roadway and Arizona’s first Historic Highway. The Apache Trail received that honor on February 25th, 1987. In fact, the Apache Trail has the distinction of being the only recognized Historic and Scenic Highway in Arizona.

apache3 The Apache Trail scenic tour will take you through deserts, mountains, by cliff dwellings, along lake shores, through old mining towns and through beautifully eroded canyons. This popular route has been used by tourists since 1915.

The State of Arizona, under the leadership of Governor George P. Hunt in 1919, decided to build a transportation link between Phoenix and the cities of Globe and Miami. Governor Hunt wanted to open the Globe and Miami copper industry to the Phoenix market. The only road in 1919 linking these two important economic centers was the Mesa-Roosevelt Road (Apache Trail) or the long rail route through Tucson, Bowie and Safford.

apache2 The Apache Trail was not an efficient roadway for moving goods from place to place. The roadway originally was built as a haul and service road for the construction and maintenance of Roosevelt Dam. For the most part the Apache Trail was a single lane road with occasional pull outs; however the roadway fascinated tourists who visited the area.

In 1919, there were several stations along the Apache Trail that serviced the tourist making the long journey by way of motorcar. There was Government Well, Mormon Flat, Tortilla Flat, Fish Creek Lodge and Snell's Station between Mesa and Roosevelt Dam. The completion of the Phoenix-Globe Highway through Superior in May of 1922 completed the famous Circle Route that allowed drivers of automobiles to circumnavigate the entire Superstition Wilderness Area, an almost road-less region.


Goldfield Ghost Town (Youngsberg, Arizona) by: Kathy Weiser

Situated atop a small hill between the Superstition Mountains and the Goldfield Mountains on the Apache Trail, the settlement of Goldfield got its start in 1892 when very rich, high grade gold ore was found in the area. A town soon sprang up and on October 7, 1893 it received its first official post office.

This “official” find, coupled with the legend of the Lost Dutchman Mine, which had been circulating for years, led plenty of new miners to the area and in no time, the town boasted three saloons, a boarding house, a general store, brewery, blacksmith shop, butcher shop, and a school. For five years the town boomed until some 1,500 souls were residing in the burgeoning city.

Goldfield Ghost Town - Apache TrailBut like other gold camps, Goldfield’s bustling days were quickly dashed when the vein of gold ore started to play out and the grade of the ore dropped even more. Just five years after it began, the town found itself quickly dying. The miners moved on, the post office was discontinued on November 2, 1898, and Goldfield became a ghost town.

However, some prospectors clung on to the area, sure to find the elusive Lost Dutchman Mine or perhaps, a brand new vein. Others tried to reopen the existing mines, but all attempts were unsuccessful until a man named George Young, who was the secretary of Arizona and the acting governor, arrived on the scene in the first decade of the 20th century. Young brought in new mining methods and equipment to recover the ore and the town began slowly come alive once more. Also built was a mill and a cyanide plant. A second post office was established on June 8, 1921 and the “new” town was called Youngsberg. However, the town’s “rebirth” would last only about as long as it did the first – just five years. Finally, the gold was gone, the post office was discontinued on October 30, 1926, and the town died once again.

But Goldfield was obviously not destined to die permanently. In 1966, Robert F. “Bob” Schoose, a long time ghost town, mining, and treasure-hunting enthusiast made his first trip to the Superstition Mountains and instantly fell in love with the area. He moved to Mesa, Arizona in 1970 and soon began to dream of owning his own ghost town. He had heard of the old site of Goldfield, but upon inspection, he found little left other than a few foundations and rambling shacks. He and his wife, Lou Ann, then located another five-acre site that was once the location of the Goldfield Mill and decided with to rebuild the old town. Purchasing the old mill site in 1984, they first reconstructed a mining tunnel, which included a snack bar and opened for business in 1988. Next came a photo shop, the Blue Nugget, a General Store, the Mammoth Saloon and the Goldfield Museum.

apache1 Today, Goldfield is filled with authentic looking buildings, includes underground mine tours, and the only narrow gauge railroad in operation in Arizona. Numerous shops and buildings include a brothel, bakery, leather works, a jail, livery, and more. The authentic looking street is filled with people in period costume, horses and wagons, and sometimes authentic gunfighter presentations.