As much as this has been a tough year, I realize I still have a lot to be thankful for. My latest good news came Wednesday. Suzanne and I went to see the eye oncologist, Dr. Mieler, for my monthly visit. We took photos to monitor for changes, then proceeded with laser to both the retinal and optic nerve tumor, and then I had an eye injection of a chemo drug to prevent further vascular growth of tumors. Unfortunately, my glaucoma pressure was 28, which is somewhat high, so I had to have an additional needle inserted and fluid withdrawn (good thing for numbing drops). The best news was that in addition to my seeing some better shadows in the last 10 days to two weeks, I had an episode 2.5 weeks ago when I saw color for the first time in 15 months (since Sept. 13, 2012, to be exact). It was definitely not imagined because the colors I saw matched the colors people were actually wearing and they verified that my perception was correct. The doctor did not expect me to notice much of a change after just one treatment, and is now very hopeful that I will continue to have improved vision as we continue the monthly treatments.
I'm also thankful about finally having my hysterectomy on Nov. 22 and there were no complications...knock on wood. It was my first surgery I think ever without a glitch, which is amazing.
In addition to those two blessings, I'm thankful to everyone who helped me throughout the year - friends, family, and therapists - who have been trying to make my life easier and get me through this most difficult time. I still think God made a mistake when he picked me to be blind because I don't adapt to this disability very well.
Yesterday I saw yet another dermatologist to hopefully, finally, determine what is wrong with my skin, but I left very frustrated. I'd seen two dermatologists and two rheumatologists, had eight skin biopsies and at least 50 tubes of blood drawn. I know what I don't have, but in terms of what it is, if it's not NSF, the doctors are baffled. Definitely they ruled out a rheumatology-based diagnosis. My skin continues to worsen as well as my joints being more painful. My bone pain, fatigue, and all the other symptoms also continue to worsen. So, I was excited when I heard about this new dermatologist who is at Northwestern and comes highly recommended by the NSF Foundation specialists from Yale. However, at my appointment we found out that she is very elderly, set in her thinking, and didn't seem to have any suggestion as to what I have. She was quick to discount NSF because I walked into the office, and she said she has never seen anyone move who has NSF. In order to diagnose it, she wanted my skin to be attached down to the bone level so I would be stiff and couldn't move. She then thought it was prophyria, but I've already been diagnosed with pseudo-prophyria. She has also never heard of VHL. She recommended I see her again in two months but in the meantime I'll decide whether that would be worthwhile. When you research NSF, it says it's a gradual progression, so if I have it I want to know soon so I can try to stop it.
I have one more appointment with the glaucoma specialist next week about my pressure, and then I'm going to try not to see any more doctors for the rest of the year, if I can do that.
This month I've found so many helpful new resources. I have recently gotten involved with the Lighthouse for the Blind in Glenview and I'm taking iPhone and iPad training. I work in addition with a girl in occupational therapy there who deals with the basics of everyday cooking, organization - things that are easy for the sighted to do but are not when you can't see. There's also an entertainment lady there named Pam who puts together trips to the movies, theater, art institute, dinners and seminars for blind people, and she invited me to their Christmas party and cookie exchange next week. It's nice that I'm finally meeting people who I feel can relate to me and I can ask them questions without feeling stupid or whatever. They have lots of resources to offer that I never heard of or would have found without them.
In addition, they put together a little packet in printed format that I can read at home on a new machine that I got just last month. It's called the SARA, it looks like a mini copy machine (8x11), and on the top arm is a camera that copies the page and reads it to me, as long as the words are typewritten. I can read my mail, magazines and any book or other literature, but nothing handwritten, and newspaper columns and ads are awkward. But, overall, it's really handy. You can set it to continually scan the pages and read it all at once, which is good for books especially. It stores an unbelievable amount of memory and computer files. Everything on my computer screen I can put on my SARA and it will read it to me. It's worth like $2,000 but I got it for free from the State.
I still attend the Mundelein Center's support group for disabled people and they had a Christmas gathering last night, which I attended with my neighbor. I have become friends with my coffee buddy from the Mundelein Center, who I call Blind Judy, and her seeing eye dog Winter. She has been incredibly informative for me. She's been losing her vision since she was five years old and the bulk of it was lost in the last 10 years. She got her first seeing eye dog then, and Winter is now her third. She's taken tons of classes at Hadley School for the Blind and she gave me the information to get a catalog and sign up for their online classes. You can learn all sorts of things like Spanish or French, scrapbooking, drawing, etc., and it's all geared for blind people. You get credit for it that could potentially go toward a degree. She also hooked me up with Second Sense, which has seminars for the blind and they do a lot of things for the families as well, such as a 24-hour experience blindfolded and I SO want my family to do it. Another girl gives me podcasts and I listen to them like a book.
I recently had a most wonderful week of accomplishment. My sister Robin flew in from Pennsylvania on a buddy pass from Brian and Darlene Schick (thank you!) for nearly a week. We spent numerous hours both cleaning and organizing the kitchen, files, clothes, closets, and in addition we went grocery shopping. She made and froze seven family meals. We threw out seven garbage bags of stuff from the kitchen alone (e.g., iced tea that expired in 2009). She ordered me all new storage containers where the lids attach to the base. We donated 20-some sweaters to Goodwill and she helped me throw out clothes that I didn't know were stained. She took me to two appointments and we went out for a couple breaks as well. For six days straight, we started working between 10AM and noon and were up until 1-2AM working. It was very intense and I have to say it was probably no fun for Robin, honest to God, but she was so much appreciated and so much was accomplished in such a short time, that I can't thank her enough. Compared to the girl I paid to work here for 16 hours, Robin did that much work in one hour. Not only did she give up time with her kids, but she could have been with her husband and father-in-law who was in critical condition if she were not helping me. She never complained. Now I'm wracking my brain for an ever-so-special, thoughtful gift for Robin.
Christmas Eve and Day we'll spend with my whole family as we always do. It's a 48-hour good time. My neighbor is having a New Year's Eve party. We had our annual book club Christmas party on Tuesday with an ornament game, and I got a really good one. I also had a couple cookie exchanges, so I need to get better at blind baking. I got a lot of early and online Christmas shopping done ahead of my surgery and I'm almost done with that. Sheila's family is coming in town from Atlanta and we're all going to Alpine Valley for a couple of days of skiing and snowboarding right after New Year's.
Tyler finishes his finals on Monday and hopefully he'll keep his As and Bs. Alyssa also has As and Bs and we're trying to spend more time on consistent study habits with her. They're both looking forward to the break and Alyssa is excited for Christmas. She has a few parties herself to attend. Steve had his 51st birthday and decided to make a big change to his life and joined the Park District health club. He's been spending about 4-5 days there per week working out and he's watching his diet. Hopefully this will assist in destressing him so that he will be a little less tense, and more lean and hopefully not so mean (ha ha) for the new year. My birthday is later this month and I'll probably celebrate it with the girls next month.
I'm worried about my brother Jeff because he's really not doing very well. He has had on-and-off pain for about two months that is increasing in his back and stomach, although his tumor has not changed in size (16cm). He has also lost a great deal of weight and is getting dizzy spells and headaches, and one of his brain tumors has developed a cyst. When it changes again in size, he will most likely require surgery. So, he has been kind of down for the holidays and wasn't able to enjoy any food for Thanksgiving. I'd like him to go to the Clinical Care Center here for an evaluation. Please send your thoughts and prayers Jeff's way, and continue to pray that my eye has further miraculous improvement.
Wishing you the blessings of the season and a happy and healthy 2014!
