We go to Cambridge for Bob to see Dr. Foster this next week. Fly all day WEd, see Dr. Foster Thurs Fly all day Friday.
Bob has had lots of photosensitivity. He has not been able to mow even the middle of yard bc he cannot see where he has or has not mowed even tho the grass is about a foot high. I mowed the edges around the trees and bushes and where there are still holes where the tree roots were from the trees we lost last year in hurricane. After stepping into a fireant hill and getting lots of stings, and falling flat on my back trying to back up with the mower, I ran out of daylight and had to leave the middle of yard to Bob or to another day that I have time to try that work again. Glad Bob likes to mow when he can see.
It is about time for him to need another Avastin shot in to left eye. It was at 350 for CME at the 26 day point after it was 300. So with an avg increase of 2 um per day swelling, he should be at about 40um increase on day he sees Dr. Foster, so about 390 if there is any consistency to the rate. He gets shots between 387 and 403 so far, so it will be in that range while we are there most probably. It has been three months on Sept 8th, so he has made it almost three months between shots this time.
I am hoping the eye is healing from the cornea transplant, the tube movement pars plana and the vitrectomy in that right eye. The glaucoma doc here removed the big contact that covers the transplant and stitches, and measured the pressure which was better now that he is back on gluacoma meds. He put the contact back on and we are hoping it holds on there until we get back to Cambridge for him to see Dr. Foster. The fellow told us that if it stays on he has to keep taking the vigamox 4 times a day, and he is on the durazol and nevanac 4 times a day to in that eye, and then lumigan once a day and combigan twice a day. for both eyes. Systane and Restasis both eyes. I can see why he gets confused on his drops bc he is often on different drops in each eye and they are all on different frequency. I took away the lotemax bc he had used it so long in the right eye he was taking it in both eyes now and he is not prescribed to have it for either eye. It sure must be hard to keep all those meds straight, but we check in together on it now while he is taking them. That seems to help.
I hope the eye is healing. He says the vision has varied every day, and he has been glum and he wears dark wrap around sunglasses even on cloudy days, but I asked him to let DR. Foster know any symptoms, bc I understand it gets stressful for me to ask him about the symptoms when they are stressful.
Well, got to go, I cannot remember if I told you all that I had to quit taking armour thyroid that I have been on since i was 18 years old, as the pharmacies cannot get the meds as they are backordered indefinitely, so they switched me to synthroid. The phar said it may be noticable bc it supplies one hormone instead of two, but I hope that won't be a problem. It seems the company that makes the powered thyroid extract (it comes from pigs) is not making enough to supply the companies who make armour thyroid and two other kinds of the natural thyroid. So it seems this is meant to be. I have the new med and will be switching sometimes this weekend. Rebecca, I think you said you take the synthroid and that it works well for you?
Take care you all.
Bob is looking forward to seeing DR. Foster, and I am so pleased the operations he did for Bob went to well. I am trying not to expect the cornea to hold or not to hold. I got so down when Bob had hope on the last tube movement, and then he lost vision over the next 22 months, that I try not to have any expectations anymore. Yet the three surgeries Dr. Foster did at once for Bob were quite amazing. They were a true miracle no matter what happens next.
Betti,
I wish Bob the best with the upcoming visit to see Dr Foster. I hope his vision will come back so that he can mow the lawn and be able to do a bit of reading which would help allot with the meds issues.
I hope those fire ant bites that you got mowing the lawn heal quickly for you so that you aren't in allot of discomfort. those have to hurt quite a bit.
Re: Bob sees DR. Foster Thurs
Betti,
It is so good to hear from you. I hope as well that Bob's appointment goes well and his photosensitivity goes away. Maybe the avastin shot will help improve his vision.
You really don't need to be mowing. I wish yall could hire someone to do your yard, but I know money is tight. Fire ants-yuck. I hate those buggers. I still remember when I was four and put my foot right in a pile. I was wearing church shoes that exposed most of my foot-wasn't supposed to have them on. But they were new and I couldn't wait to wear them.
I have been following your posts about Bob's operation and I am wishing you both all of the best.
We are going to see Dr. Foster on 9/24 for my husband's eye problem, I think, so if you and Bob will be there for a follow-up appointment on that day, which I think is Thursday, let me know. I would like to meet you both -- as I do get a great amount of inspiration from you, Betti, as sometimes I am feeling very frustrated.
So if you are in boston around 9/23 - 9/24 or so, let us know and we can meet for wine or oysters or something. (We spend lots of tme at legal seafood due to the proximity of it with MERSI.)
sO WISHING YOU the best and Bob the best along with a speedy recovery, deb
Thank you so much for your replies. Bob's left eye is still seeing enough he can read computer, so that is mostly what he is doing. The right is just in such bad shape that if it can just hang on and get even that spot of tiny vision he really cannot use it will be more than I would ever allow myself to hope for. I know it will be a long shot for the cornea to hold, but if it would, even if the vision is not usable, they could treat his eye and we could hope for regrowing the optic nerve a bit if that every becomes possible.
Yes, right now I try to save everything for travel, as there are only a few jobs comeing in from offshore for Bob. I am just staying away from anyplace that requires money unless it is for his med travels. I usually store up food on sale for hurricane possiblities so I have been able to use that all month and prob can get thru one more, except for bread or maybe some milk if I run low on the powdered milk I got for the hurricane days.
Fire ant bites don't seem to heal much at all, darn things all over my feet and legs. So I am going to go soak them in some H Peroxide. Yet it was a relief to get that really high grass and weeds down. I can get to my muscadine grape vines now.
We put out a message that we will do the Walk. IF something comes up then we can do it here, that is if we have to go back bf the Walk for Bob's eye and then after the WAlk. Whatever Bob needs is the most important. I will change the email to say we will still walk here if for some reason the timing is not right. I don't know what we can contribute right now except the change I have been saving all year for the Walk. Usually Bob or I or both have something to give. If he gets a lot of jobs we give a lot, but this year we have brought in less than 1/4 if the income we normally bring in. On top of Bob's med stuff I had a $3,000 dental bill last month, and the insurance found a loophole not to pay their 1/3 that they would owe. I will appeal, but I don't always win. I always try though.
We are grateful though for each moment and for all we have. The only reason Bob has not given up and is still here with me is that he got his reading vision in left eye back with DR. Foster's interventions. We will hope the shot to the left eye and the operations to the right will give him more days and years to work and read and enjoy life, and that he can at least keep the right eye alive and not have it dye painfully. At least not this year. That would be such a nice miracle, but no matter what we have already had 6 years of miracles, since he first lost all his sight.
Well, I best go try to figure out why the darn vacume won't work. Really need the thing to work to live with these rugs in four rooms of our house.
Buster our cat is fat and happy since we have been home with him a couple of weeks. He will be glad we will only be gone three days this time. I don't know yet when we go back, but we hope that if it is supposed to be in a month after this visit that we can get it to coincide with the WALK. We will have to wait and see what DR. Foster wants Bob to do. If we can set it for the same week we will see if he can see him on Friday or if he will need to be there for Thurs. Whatever is the best for Bobs eyes.
I appreciate you all being there for us, and please keep up the good work you all are doing. Deborah I hope we will be there at the same time and can meet. Rebecca I hope we get to see you again soon.
Re: hi yall
Betti, I will miss you by one day...I have an appt at MERSI this afternoon. Safe travels to you and Bob and hope he gets a good report from Dr. Foster.
Mary, I am sorry I missed seeing you while there. Mike I will try to be brief in case my computer or monitor is going out. It keeps flashing off and on.
Bob's right eye was doing very well. The transplant looked good Dr. Foster told us. The left eye, the one he depends on, was worse than I though. I had thought the swelling would be about 390 to 406 um, but it was 435. Dr. Foster gave him a shot of Avastin.
We talked about any other thing to add to decrease the macular swelling in that eye. We decided against Diamox as a try for now, bc a similar tablet, methazolamide caused him to have cofusion, odd behavior, perhaps a bit of dilerium when he was on it and it had to be stopped.
I remembered that Bob has been taking lotemax when he was not supposed in in the left eye. We are not sure how long he was confused and taking it. I asked Dr. Foster if it might help or hurt the CME. He wants Bob to take lotemax 2 times a day in that left eye, and he also changed him from nevanac to xibrom, bc Bob thought he was on that when the long stretch of 6, almost 7 months without needed Avastin occured.
The great surprise was that the RIGHT eye that was not able to be scanned for about a year managed to NOT have cme. Now that we found out about the lotemax we wonder if that is one reason it is so beautiful on the oct. He was on everything in both eyes except the avastin shots. We certainly do hope that the xibrom and lotemax might slow done the frequency of need for shots. Since Bob's eyes are so problematic we hope this will elp him.
It is driving me nutty trying to type while the computer is black but it does work to do so, so I suspect it must be a problem with the monitor.
We plan, God willing, to go to the WALK, We do not have much to pay for groceries these days of the trips, but I do have the change I collected all year, and we have some friends and relatives who have sent us checks this last week since I emailed we are going to the WALK. Bob's next follow-up on the cornea and also his left eye is set for the Friday bf the WALK.
WIll write more later, but thank you all for caring about how Bob is doing, and for your support.
We go to Boston/'Cambridge on Thurs Morning, leaving at 6am. Get there in the late evening probably. He sees DR. Foster for followup on Friday the 25th. Be there early morning. Anyone else be there at same time??
Now, back to dreams Mike. I guess my mind is listneing to you telling me to take care of myself too, and so it made another living color action film of it.
Dreamed that friends and my minister were talking with me as I woke one morning. I don;t know why they were all here at the house for some reason over night. They were telling me I had "been out a while."
Our minister told me "yes your heart stopped awhile, but not long, and we thought we lost you, but you are going to be fine now. She said very sternly "you have to take care of yourself, slow down, you have had a warning, and now it is up to you to put yourself first when you need to do it.
Anyway, I guess I will have to heed it bc the dreams seem so real sometimes that you have to take them more seriously that things you know or others tell you.
So even tho the grass is growing tlall again, and Bob not feeling like mowing, and any light still makes his eye bleach out somehow and he cannot see where it need mowing, I left it alone. SAme with lots of other stuff I wanted to do tonight. Just rested and petted the cat and watched a movie I like. REALLY HARD TO DO IT, but I guess dreams get points across. Will have to be more like the turtle than the hard.
Glad I am not that MEDIUM lady on TV, on of my favorite shows, bc usually mind are not real, just ways for my mind to make me take care of myself.
Wish we would see you on this trip. I would love for Bob to meet you. Maybe offshore work will pick up if Obama does not keep Gulf taxation on drilling and stuff to keep the Gulf drilling shut to less than half one year ago.
Re: hi mike and all
I am glad that you are slowing down a bit, perhaps you could see if someone at your church could stop by and do some yard work for you. maybe you could do something in exchange to repay them since monies are so very tight right now for you.
maybe someday we will meet. the main thing is to keep seeing doctor Foster for Bob's eyes right now as this is such a critical time in his care.
yes, i guess i thought i was balancing things well, the dreams usually come from a wiser part of me though. so i take things like that seriously.
well, for several months the money after taxes on jobs, since about march or april i guess have paid mostly for the insurance which we have from the job. also a bit on living expenses or travel.
mostly been using savings and now IRAs to pay bills and almost all of the travel, same for my income.
so have been trying to keep food bills down to less than 60 a week, was able to use what i had back for insurance to keep them for zero for a month.
so there is no money for extra help. bob is doing better most days on exams and reading up close and things he loves like his work when he has it.
even with dark wrap around sunglasses he cannot usually see outside in the light enough to do lawn or other work. been that way most of last 3 or 4 months. was that way off and on, mostly off the last 6 to 8 months. no reason we can find. he is doing well with all we know for him to be tracking. so will have to see what his docs say. when he does well on all he is tracking and all they know to check we make this a low priority bc he is doing well in all the tons of things we all track. he can do the work he loves if he had it, and he can read and that makes him happy.
i really don't feel comfortable asking for help yet. i will have to learn to live with tall grass unless it gets to point he or i cannot get out to do it bit by bit and it gets too tall to tackle or critters move in.
if that starts to happen then i will see what i can do. will ask for help or will think it over and see what else can be done.
i have always, since we found dr. foster, put travel to see bob's doctors first. usually when things get tight like this it eases up after a while. usually bob gets to where he can do more, or he makes enough money we can get help somewhere, house or yard. sometimes i am here more bc we travel less so my income goes up and also i have more time to help in yard and get house and bills and things done.
we are not at the point that is the worst. that was in 2004 to 2005 when there was no insurance and we were paying 1200 a month cobra, and there was no company and we were managing to travel and pay bills and pay that cobra on a total of 25, 000 income that year. I have no idea how it worked that long, but by balancing using IRA savings and working when i could tho we traved for two surgeries in Boston, somehow we got it done. I think the refund on the taxes from all our expenses for medical helped a lot the second year.
anyway, if God plans for it to be done, we find a way.
so what i have to do, and do not want to do, is keep letting things go more than i want to let them go, and do what i can in a more balanced way. no one is going to die bc we have two foot high grass in our curb area that collects the soil from our yard and a few neighbors. we managed to do the yards last month, and so it is mostly that area starting to grow and an area in one corner of the yard, growning about afoot or two.
either bob will get a high cloud day or i will have a spot bf we travel or after. i am just not going to let it bother me, and we will get it done, or if we catch a break like both getting more work then we will get caught up again.
anyway....we are on the right track. just have to prioritize. Bob's eyes and his health always come first, but I am putting my health as equal, and the rest of the stuff gets done when it gets done. my work comes almost equal bc there are people depending on me there, tho those are my three priorities.
i let myself wake without a clock today, so i know that will help, so now i have to go write out the top things we have to do and forget about grass. maybe we can create a natural habitat for wild animals for our yard effect. I have a friend who did that bc they just WANTED it that way. our humming bird is back, at least one, and i let his need for a feeder go yesterday bc i saw he/she was nurtured by some of our flowers in the garden, a bit neglected so the bushy flowers are really abundant this week, so i put off the feeder til today but that will get done too.
got to go, and see if bob thinks he can catch a cloudy time today and let him know the yard is not my prority if he needs to do something this weekend.
Do you have a Landscaper as a client of yours in for counseling that you could 'trade' with? you give him like time for his taking care of the Yard? it would take one of those troubling life events and would put it on a real back burner if you could get the yard cleaned up. it really needs to be mown weekly or bi monthly if at all possible. forget being too proud to ask for help from the church as well. the old saying 'ask and you will receive' holds true.
Well, my neighbor came over this morning as I was leaving for church, and she asked if I would let her bring her riding mower over and do our backyard for you. She ran over the back and some big weeds at the front curb while I was at church. Bob loves to try to work on the yard when he can see, but the light is so bad he tries, but even on cloudy days with his dark wrap around sunglasses he cannot do the yard. She left most of the front for him, and places near trees and bricks and air conditioner etc, so he can feel good about doing something if he has a good cloudy day, or if it is not so cloudy that he cannot see with his sunglasses on. Even light comes thru on very cloudy days so he has to get it just right where he can wear the sun glasses, but mostly a cloud cover. He still hopes to get a day like that before we leave.
There is a restriction on us that we cannot trade work with clients. There are times it would benefit the client, and this time it would help us, but it is restricted. We seem to go more by the letter than the spirit of the law on that, so it takes any chance of making a mistake and taking advantage of a client, yet we violate the spirit of the law sometimes this way unless we can find someone who can help them. Just a problem with our profession.
Anyway, Bob used to get upset if someone offered to help with the yard bc it means so much to him to be able to do it, but he really appreciated the help this time too.
Also found out the leaking washer is still under a 5 year warranty, so when we get back, we are going to call and see if we can get that fixed too. So we feel very blessed today.
Re: hi mike
That's great that your neighbor came over and did the lawn for you. maybe you could bake he a pie or something to show your appreciation to her. it doesn't have to be anything big or a card etc.
now you can relax a bit as the lawn has been bothering you for months now.
Getting the washer fixed is great too. do you have a copay with this insurance?
Re: hi mike
Hi Betti
Just wanted you to know that I totally follow your threads on you and Bob and today I took a deep breath for you because you have been handling this for a very long time. I hope your trip to Dr. Foster is a fruitful one and I will be thinking of the both of you.
Ronni
Thank you, and I am sure it will go well. He is very fortuante to have Dr. Foster and also his other dedicated doctors who have done everything in their power to help him. We are very blessed.
Made some brownies and shared some with our friend next door and wished I could share some with you all.
I wish I could see you on this trip. Wish we could meet in person.
Re: hi ronnie
Hi Betti,
I really wish I could hop in my car and come to Boston for the day but I am in treatment this week and am constantly keeping an eye on my mom at the home. Sometime when you are coming to Boston I may surprise you--meanwhile have a good productive trip and enjoy the walk
Ronni
I hope we do get to see you on one of the visits. I am sorry you have so much on your shoulders now. You have such a load to carry right now.
We had a surprise in the mail. A dear lady I think so higly of, and have known for more years than I can remember, sent us a lovely card, and also a check that she said she wants us to do something special for Bob and myself. Isn't that such a sweet and caring dear soul?
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