Dear Betti, maybe you' re packing your bags or checking out the last details before your departure...it must be hard. I wish Bob the best of luck with his check up and I wish you some peace. I won' t be there in person, but I promise, I will follow you in my thoughts and prayers.
Thank you for your thoughtfulness. I managed to lose my ring at my office, so hopefully there, spend one hour trying to find my wallet with driver's license etc that I need tomorrow, but found it where it fell out of my purse and into the space between the seat and the cardoor, just about an hour ago.
So now back to finishing packing and getting things ready to leave in the morning. As long as I have Bob that is the main thing, but without that ID I would have had to put him on the plane alone.
Bob is fine and washed the TWO circulating water dishes for him, and put fresh food and dry food out, and helped me look for my wallet.
As I said as long as I have Bob on the plane our main goal is accomplished. How a ring can slip off your finger into your office somewhere is beyond me, but it should be somewhere to be found when we return. I is an old ring bob gave me years ago, a tourquoise and silver...not my wedding ring, so that can wait too.
I am hoping Bob has a good checkup, and being very tired and wanting to have a great checkup for him, I hope that everything they are doing looks just peachy and we won't have to chance even one thing for him this time.
We are looking forward to the WALK, but I best go find my tennie shoes for that ...as I said Bob is fine, maybe we can get some rest if the planes all go as planned tomorrow and we get in in time.
Thank you and please update us on how you are doing, so I can read it all when we get to the hotel when they have one of the computers avail.
Hope to get to meet you someday. My friend is in Italy visiting, but I am not sure where all they are going.
thank you for replying. I don' t know how you can loose a ring...sometimes strange things happen but I hope you' re going to find it. I' ll keep my fingers crossed for Bob. I promise to keep you updated about my eye situation and everyday life...It would be wonderful to meet you and Bob in person someday. Who knows?.
I tried to post a couple times while we were in Boston/Cambridge, but the computer at the hotel would freeze up when you tried to pull up the site. It did not seem to be working well at all. You can tell they are being hit by this economy. Just see cutbacks everywhere, and they really look like they mean it these days when you check in and they say they appreciate your loyalty. Hope they make it thru this economy.
Bob had such a good checkup that I hate to even share it, bc with his ups and downs with his eyes and other health problems, you kind of wait for the other shoe to drop when things look good.
The Walk for vision was a delight, and the weather was beautiful. I liked walking after we ate, as I am so tired after walking thata it is just not the same, and also it gave you more energy to make it around the 5K. Bob and I start out near the beginning on those walks, but we are usually the last or near the last to push ourselves in. I really need to start walking again during the year instead of trying to change from a half miler to a 5 k like I did this year.
I think I told you all that Bob had been accidentally taking the Lotemax in his left eye when he was on it for the right eye for two years helping the right cornea hold on as long as it could bf the transplant. I caught him taking it twice in the last three months. I had taken one bottle and hidden it, but it seems he wound up with a second bottle from somewhere even after he quit taking it for the right eye.
I have been charting all the interventions for the left eye's CME bc Dr. Foster said it is important Bob has a few Avastin shots as possible bc he is at risk for some problems if he has to have them frequently. The charting shows that from Sept of 08 til March of this year he managed to keep from having the shots while on Dolobid 500mg twice a day, SAndostatin shots once a month 20mg LAR, Nevanac or Xibrom drops, and Avastin as needed.
Well there were no variables I could find that showed why there was a lag, but then it started needed the shots every month or two again lately. I starting going back of medications not for the CME to see if I had enough data to see if something not intended caused the differences. That was harder bc I was not tracking them as carefully.
Bob noticed that he thought the eye did better on Xibrom, than on Nevanac, but he did not know for sure, and since we were always told by everyone they were equivalent, but take three drops a day nevanac and two a day of xibrom I had not tracked that.
Dr. Foster had him switch to Xibrom, and we were going to see if that helped slow the need for Avastin down. That was a month ago. That evening as we were in hotel last month, it popped back into my head about Bob taking the Lotemax by accident recently. I started wondering if he might have been doing that awhile too back when he needed less Avastin. I had no way to chart it as I had no way of knowing when he took it accidently. It gets confusing for him when he has different drops for different eyes, on top of frequent changes in drops.
I wrote and email to Dr. Foster asking if he thought it would help, hurt, or make do difference to the CME. He told Bob to take the Lotemax twice day in that left eye now. He took it all last month, and he had a better CME OCT result than we have EVER seen in that eye, since we first starting going to Boston in 2004. Of course he is still on the Sandostatin and Xibrom and Dolobid and had an Avastin shot last month, but he has never had a normal range, all blue on OCT. It was such a lovely surprise, bc Bob has been having lots of light sensitivity and trouble seeing after the last three Avastin shots, and the other option of Acetozolamide, was similar to a drug that made Bob confused and unable to remember how to do things, and kind of out of it, so I was very afraid for him to try the medicine.
Anyway, we are hoping that will all the interventions, including the Lotemax, that it will slow down need for the Avastin again. It would be a blessing if with all of these things it would keep him from needing Avastin again. I guess we will have to wait to see, but Bob has been seeing better with his better eye the last few weeks.
The new transplant cornea on other eye has a triangel shaped scratch, so he is on refresh pm for it three times a day and at night. Dr Foster said it looked beautiful though, even tho he only has vision of counting fingers, we were never hoping for vision in that eye, just hoping the transplant will work and he wont' get a painful blistered eye that he would lose completely.
It was great to see everyone we were able to see at the WALK, but so many were either missing or we never got over to see them. It is such a treat when we do get to see others for the WALK. We sat at a table with Jen, and her boyfriend and Mom, and Greg (I am sorry I never remember last names, maybe you all will know as first names?) Greg is always at the art actions and seems to be very active in fund raising and is starting a local chapter. Maybe if Greg reads this he can fill in details about how the chapter is going.
We are disappointed that with Bob having no income, and mine being really down bc of travel, that we were not able to contribute much at the Walk, but we were so grateful for others who backed us. We hope for our sakes and for the Walk for next year that things pick up for us workwise soon.
So, to sum up, we were so pleased with Bob's OV with Dr. Foster that we really are praying that things can stay that way a while for Bob.
We are indeed fortunate, like so many others that Dr. Foster is so dedicted to helping so many. I don't know if I ever mention it, but it is also such a blessing that he always sends letters out to our local physicians who help Bob based on what DR. Foster recommends, from Bob's rheumatologist to his gastroenterologist, internal med doctor, and his eye doctors, many of his doctors here go out of their way to do all the can to help Bob based on what Dr. Foster recommends, even tho most if not all of them treat no other uveitis patients and have no background to do these interventions other than they trust Dr. Foster and work with him to help Bob, by trusting and following Dr. Foster's advice. They all seem to pleased with being including in the treatment plan and progress that Dr. Foster shares with them, and so willing to do whatever they can to help Bob, as long as Dr. Foster will take the time to share with them what is needed and what the results are for Bob overall.
I am still aching from shoulders to toes to head from that WALK, gee I have to get back to more regular longer walks than I have been.
IWelcome back! I' m so pleased and thankful to God to hear these good news about Bob. I pray and hope that things can stay that way for a long time. Wishing you the very best,
Federica.
Ps. Now, try to get some rest before starting a more serious training for next year walk for vision. 5 km it' s not bad at all.
Well, you know I used to be able to just walk 3 to 5 miles without any problem, even if I had quit doing long walks awhile. I may be because I am coming up on 62 now that I notice the aches if I have not been walking more than a half mile a day for a year, then head out on that stretch. I wa actually surprised that I had not problems with my knees or hip joints this year as I have had in the past, but as soon as I sat down when we got back it hit me. I just wondered if I could get up again, but after resting awihle was fine. Just those aches got me the last few days. So by tomorrow I think the aches will be gone...yeah.
I did not have any more bad or anxious dreams about bob's illnesses the last few nights, so I am relieved. Yet that dream about the places the fixed on the house starting to leak again go to me and woke me last night. I have that one a lot, which is normal at the one year anniversary time of the hurricane that took out most of our home. I am always relieved to wake and see no leaks. Seems pretty strongly rebuilt, but I will probably get a look over for the roof and attic once more by someone that does roofing just to be sure.
I wanted to tell you I found my ring today too. It was a bit loose, and I was working in file cabinets with tightly packed folders and also in a brief case with lots of papers etc. So it got pulled off by some papers into the brief case. I knew it had to be someplace like that. Just forgot to reset my watch so I thought my patient was an hour late for the first appt. I was still on Boston time, an hour ahead.
Should be back in sync by tomorrow. Bob says he is still doing well with his eyes,but finally admits he has been really tired since the walk. He has almost 14 years on me and never complains and refuses to do the short route, but I knew he had to be aching too bc he walks less than I do.
With his eyes being better, and more tolerant of light, he might get to do the yard again, and I will a little rain dance or something of happiness if he takes that back. He will have an appt with his glaucoma doc in a couple weeks and every two weeks until Dr. Foster sees him again in 8 weeks. I hope that he and I get some work and pay put back again bf another trip. Those trips really add up.
Keep us up to date on how you are doing, and I will let you know where my friend went in ITaly when I next hear from here.
Got a ton of prof meetings this week. I have meetings of two peer groups this month, as well as several one to three hour professional meetings that have CEU info included. So will be a bit busy this week and next catching up etc.
I will let you know how Bob does, but for now, I am relieved I can rest a bit, even a few days helps. Dream of something not related to hurricanes and medical issues would be great. I have put off two appts for myself that were needed a few months ago, bc they are follow up to things that were a bit stressful for me last year. I think I need until early Nov bf I face them, just a bit of rest, plus Bob's birthday is on halloween.
I' m glad you' ve found your ring. These "little things" thatmaybe to other people could seem priceless are very pecious to us. I' m also glad to know that Bob is doing fine and I will keep my fingers crossed for him during the next 8 weeks. I can only imagine how shattering should be leaving in an hurricaine area. I bet you0 re having trouble sleeping. Work is work and it seems to me that you' re going to have a pretty tough time but...I hope you and Bob could have alittle rest together very soon.
Wishing you the very best,
Federica.
Ps. My OCT scan is scheduled for tomorrow. I' ll let you know ho it goes...
So good to hear your news about your OCT. Trying to catch up here on jobs, work is behind, so working late this evening, but thought I would send a hello.
Topic Commands
Click to receive email notification of replies 
Click to stop receiving email notification of replies