I now wear my new lenses from about 7:30 am to 10 pm. My life has dramatically changed. I am once again exercising 6 days a week, yoga 3 times a week and jogging 3. Yes, I'm determined to build up my strength, not to mention courage, to run the Manhattan Half Marathon in April.
My new eyes allow me to entertain with ease. Last night we hosted guests and tonight we will, too. As Mariel would say: woot.
Thursday, December 15, 2011
Friday, December 9, 2011
Graduated with Honors
After 4 days at the Boston Foundation for Sight, I have graduated. I haven't felt successful in a long time so I'm basking in the glow of accomplishment.
The Foundation is an amazing place. It's no wonder my insurance company covered me there and not somewhere else. This is where the PROSE device was invented. They make the lenses on-site, so you get them within hours of your fitting. If you need a different lens, no problem. They made about 15 different ones for me, not giving up until they felt the comfort and corrected vision were perfect.
You have to be trained to remove, insert and care for these pricey babies, which are made of hard plastic and shaped like stemless margarita glasses. I got the hang of it pretty quickly and so was dismissed after Day 4. They want to profile me in their next newsletter, so they took photos and will interview me via email to get my story. There's always a story.
The margarita simile made me want to have one. No, not a simile. My friend Sue and former library colleague drove up from Rhode Island and we went to a Mexican restaurant. I had a chance to show off my Spanish to the waiter. The food was delicious--I had chicken in mole sauce, something I will never cook--and the margaritas were on special. Catching up with Sue on library gossip was fun, too.
Today, I pack up and take a train to New Hampshire to visit Patty and Jeff. I look forward to a nice quiet weekend among friends.
The Foundation is an amazing place. It's no wonder my insurance company covered me there and not somewhere else. This is where the PROSE device was invented. They make the lenses on-site, so you get them within hours of your fitting. If you need a different lens, no problem. They made about 15 different ones for me, not giving up until they felt the comfort and corrected vision were perfect.
You have to be trained to remove, insert and care for these pricey babies, which are made of hard plastic and shaped like stemless margarita glasses. I got the hang of it pretty quickly and so was dismissed after Day 4. They want to profile me in their next newsletter, so they took photos and will interview me via email to get my story. There's always a story.
The margarita simile made me want to have one. No, not a simile. My friend Sue and former library colleague drove up from Rhode Island and we went to a Mexican restaurant. I had a chance to show off my Spanish to the waiter. The food was delicious--I had chicken in mole sauce, something I will never cook--and the margaritas were on special. Catching up with Sue on library gossip was fun, too.
Today, I pack up and take a train to New Hampshire to visit Patty and Jeff. I look forward to a nice quiet weekend among friends.
Tuesday, December 6, 2011
Day 2 in Boston
Yesterday, I arrived at the Boston Foundation for Sight and had my first consultation. After much measuring of my vision, the doctor inserted the PROSE lenses for the first fitting. They were not my prescription--that would take a day to make--but they had me wear them for 3 hours to assess the comfort level.
The right lens fit perfectly; the left irritated my eye. They inserted another lens in my left eye and that was better. I wore them for another hour, was evaluated by the doctor, and told to return tomorrow morning at 9.
I waited and waited for the hotel shuttle. I called and told them I was still waiting. Finally, an hour and a half later, the bus showed up. I was angry, but when I got back to the hotel, the receptionist apologized profusely and said she took $20 off my rate for the night. I used the money to pay for dinner at the Asian restaurant connected to the hotel. I was too exhausted to go any further. The food was surprisingly good.
This morning I had my first training session on insertion and removal of my new prescription lenses. It is not easy. So far I've been wearing them for an hour and I can see better than I've seen in years. The left lens is somewhat irritating. Once the doctor examines me, an adjustment can be made and I'll have the new lens tomorrow.
The computer gives me no vision problems; to read a book, however, I have to wear reading glasses. I'm not complaining. I've been wearing them for years.
The right lens fit perfectly; the left irritated my eye. They inserted another lens in my left eye and that was better. I wore them for another hour, was evaluated by the doctor, and told to return tomorrow morning at 9.
I waited and waited for the hotel shuttle. I called and told them I was still waiting. Finally, an hour and a half later, the bus showed up. I was angry, but when I got back to the hotel, the receptionist apologized profusely and said she took $20 off my rate for the night. I used the money to pay for dinner at the Asian restaurant connected to the hotel. I was too exhausted to go any further. The food was surprisingly good.
This morning I had my first training session on insertion and removal of my new prescription lenses. It is not easy. So far I've been wearing them for an hour and I can see better than I've seen in years. The left lens is somewhat irritating. Once the doctor examines me, an adjustment can be made and I'll have the new lens tomorrow.
The computer gives me no vision problems; to read a book, however, I have to wear reading glasses. I'm not complaining. I've been wearing them for years.
Tuesday, November 29, 2011
Great News on the Eye Front
The Boston Foundation for Sight called last Friday and left a message: we'd like to schedule you for a fitting. The woman I have to speak with was out sick yesterday, but I hope to speak to her today. All I can say is hallelujah.
Friends, family, doctors, and readers of this blog know that severe dry eyes have been my Achilles heel for some time now. Of all my symptoms, my eyes have prevented me from doing so many things. They also make me clumsy. And did I ever mention that they hurt?
I'll know more later but I'll be staying in Boston for about 2 weeks. I'm hoping to find an inexpensive room near the hospital, and I'm hoping that my Boston area friends might come visit me in the evening. Special shout out to New Hampshire and Rhode Island buddies.
On the doctor saga, my NY doctor never received a report from the Boston one. I think it's an administrative issue, so I named names. I don't usually like to do that, but my health is at stake. Anyway, we left it that she would contact him and they'd make a plan. But it won't be implemented until after I return from Peru in January. We're going to visit Mariel at the end of December.
My blood counts were impressive (normal) except for the reds, which remain on the low side (HG:10). I feel pretty good, though, and everyone says I look good. Today I get the stitches taken out of my cheek and hopefully get the green light for exercising again. I'll update soon.
UPDATE: The stitches came out and I'm healing "beautifully," as the doctor put it. I have an appointment in Boston for my lenses on Monday, December 5th.
Friends, family, doctors, and readers of this blog know that severe dry eyes have been my Achilles heel for some time now. Of all my symptoms, my eyes have prevented me from doing so many things. They also make me clumsy. And did I ever mention that they hurt?
I'll know more later but I'll be staying in Boston for about 2 weeks. I'm hoping to find an inexpensive room near the hospital, and I'm hoping that my Boston area friends might come visit me in the evening. Special shout out to New Hampshire and Rhode Island buddies.
On the doctor saga, my NY doctor never received a report from the Boston one. I think it's an administrative issue, so I named names. I don't usually like to do that, but my health is at stake. Anyway, we left it that she would contact him and they'd make a plan. But it won't be implemented until after I return from Peru in January. We're going to visit Mariel at the end of December.
My blood counts were impressive (normal) except for the reds, which remain on the low side (HG:10). I feel pretty good, though, and everyone says I look good. Today I get the stitches taken out of my cheek and hopefully get the green light for exercising again. I'll update soon.
UPDATE: The stitches came out and I'm healing "beautifully," as the doctor put it. I have an appointment in Boston for my lenses on Monday, December 5th.
Thursday, November 17, 2011
Mohs Surgery for Melanoma
Early yesterday, I walked to the surgeon's office to have a bit of my cheek sliced away. Two months ago, a tiny melanoma was found there by my dermatologist. The worst part was the lidocaine pricks, but I'm used to that.
The procedure took a few minutes; the bandaging took longer. I have an inch or more of oval shaped white bandaging under my right eye, sticking out a quarter of an inch. I have to return today for either more scraping or stitches. I'm banned from exercise of any kind for at least a week. This will be difficult.
My NY doc still hasn't gotten back to me about the second-opinion findings. I call and leave messages every day. I want to march over there and confront her. I probably won't do that though. I'll call again today and try to be patient. Grrrrr.
The procedure took a few minutes; the bandaging took longer. I have an inch or more of oval shaped white bandaging under my right eye, sticking out a quarter of an inch. I have to return today for either more scraping or stitches. I'm banned from exercise of any kind for at least a week. This will be difficult.
My NY doc still hasn't gotten back to me about the second-opinion findings. I call and leave messages every day. I want to march over there and confront her. I probably won't do that though. I'll call again today and try to be patient. Grrrrr.
Thursday, November 10, 2011
Time to Get Agressive
I took the train to Boston Tuesday, where I was able to see Ronni for lunch. It was a beautiful day to sit outside and compare war stories. She escorted me to Dana-Farber and the new clinic. Ronni went off to the Museum and I waited for my blood draw and my appointment with Dr. Antin, my transplant doctor. His advice: double the prednisone, double the Cellcept, add sirolimus back in, and start Rituxin, a B-cell inhibitor. In other words, lets get aggressive with the graft vs. host disease. Let's try to control it instead of it controlling me. The prednisone will be the first to go if I improve significantly.
This is what I wanted to hear. Dr. Antin is going to send a report to my NY doctor with his recommendations. I suspect she'll go along with them.. Dr. Antin recommended a bone density scan (I had one a year ago) to see if the osteporosis has improved or not. There's another stronger med I can take for my bones. Really, I feel I have a rubber coating protecting me. I fall a lot and haven't broken anything but my spirits.
I asked Dr. Antin about altitude medication since I'll be going to Peru to visit my daughter in December. There is something I can take, but he said I can chew cocoa leaves and that will control some of the symptoms. Where do I get those? Oh, they just give them to you. You can also drink tea made from it.
Is there any doubt why I love this doctor?
This is what I wanted to hear. Dr. Antin is going to send a report to my NY doctor with his recommendations. I suspect she'll go along with them.. Dr. Antin recommended a bone density scan (I had one a year ago) to see if the osteporosis has improved or not. There's another stronger med I can take for my bones. Really, I feel I have a rubber coating protecting me. I fall a lot and haven't broken anything but my spirits.
I asked Dr. Antin about altitude medication since I'll be going to Peru to visit my daughter in December. There is something I can take, but he said I can chew cocoa leaves and that will control some of the symptoms. Where do I get those? Oh, they just give them to you. You can also drink tea made from it.
Is there any doubt why I love this doctor?
Thursday, November 3, 2011
Dana-Farber Appointment
I return to my old stomping grounds next Tuesday. I never thought I'd be so excited to go to a Cancer Institute. Dana-Farber is one of the best places to go for a stem cell transplant. They do a lot of them, and do them well.
Having survived two transplants there, I am biased. The nurses and support staff are terrific, but it's my doctor who I believe is the best person to evaluate my pesky graft versus host symptoms. He's also great to talk to, about baseball, travel, fiction and of course transplant science. He's the director of the transplant unit at Dana-Farber, and it's easy to see why.
Enough fawning. I'm taking Amtrack to Boston early on Tuesday and have an appointment at the end of appointments which means I'll have a goodly amount of time to discuss and get input on my health. Maybe I can join clinical trial. Maybe my meds just need adjusting. It's a second opinion worth receiving.
I'll spend the night with friends in Providence and then take the train back on Wednesday. I can't leave Marty and Turbo alone for long because they get confused and can't find things.
Having survived two transplants there, I am biased. The nurses and support staff are terrific, but it's my doctor who I believe is the best person to evaluate my pesky graft versus host symptoms. He's also great to talk to, about baseball, travel, fiction and of course transplant science. He's the director of the transplant unit at Dana-Farber, and it's easy to see why.
Enough fawning. I'm taking Amtrack to Boston early on Tuesday and have an appointment at the end of appointments which means I'll have a goodly amount of time to discuss and get input on my health. Maybe I can join clinical trial. Maybe my meds just need adjusting. It's a second opinion worth receiving.
I'll spend the night with friends in Providence and then take the train back on Wednesday. I can't leave Marty and Turbo alone for long because they get confused and can't find things.
Subscribe to:
Posts (Atom)
