Happy New Year! Hopefully most of you received a Christmas card from me this year. Steve couldn't find addresses for everyone, so if we missed you and you still want one, please let me know.
Everything went as planned over the holidays. We had a great extended holiday period. Tyler was home for almost a month and Alyssa had two weeks off. Santa brought everything they wanted. Over the break, we attended all the family get-togethers per our usual routine, and it was great to "see" and catch up with everyone. It seems everyone is growing up, yet we are all still young-spirited. We played all the kid games and exchanged gifts like we've done for years. This year the highlight was that all 10 kids brought a bathing suit to my cousin's for the Jacuzzi, and as it snowed, they took turns lying on the freezing cold patio making snow angels. It was so funny and cute.
As you know, this winter has hit us with not only 60+ inches of snow but absolutely bitter temperatures as well. We still managed to get in our ski/snowboard trip to Alpine Valley. It was like 15 degrees and windy. Sheila and I stayed in the resort for the whole time and found an excuse to visit the bar. The rest of our families took turns hitting the slopes and warming up. Even the big boys, Barry and Steve, got out there and skied. We had dinner and spent the night in Elkhorn, and the next day Tyler and the other kids braved the cold again and spent the day in downtown Chicago, where they even fed the hungry.
I avoided doctors throughout the entire Christmas season until Jan. 13, when I got a bladder infection. I had my third eye injection and laser treatment in January and I told my eye oncologist, Dr. Mieler, that I've had more days with improved shadows, yet I haven't seen anything in color lately. He was again pleased that I was having progress. My eye pressures have been 18 and 19 over the last month, which are very good readings for me. When he looked into my eye, he said, "I'm not just saying this to make you feel good, and I don't just say things to my patients unless I really feel something is changing, but looking into your eye, I think we may have a miracle happening." He added, "Since we started this treatment, not only is there improvement as to what you are seeing, but we are seeing the tumor size shrinking and getting flatter, and the fluid is being absorbed. If this continues, eventually the flattening of the tumor will cause the retina to reattach itself." I asked if surgery is needed but he says he doesn't know yet, but a lot of times the eye can form the cells needed to reattach. If the tumor keeps shrinking every month, and it takes the weight off that optic nerve, that's what's preventing light from getting to the retina. He seems fairly excited. He said, "I can't tell if you'll get complete vision back or color, but I know that your vision will get better." There has been more progress since that visit and I'll see him again on Wednesday for treatment #4. We'll continue this monthly as long as the progress continues.
Regarding my hysterectomy, at my six-week checkup, everything was good. I am now back to starting a series of six-month follow-ups. I just scheduled March 14 appointments with my neurologist and my GI/pancreas physician, and I have an appointment this Thursday for a kidney MRI and blood work.
I'm also scheduled on Thursday for a seminar at the Lighthouse for the Blind to meet with an eye surgeon and some engineers who are putting together an eye transplant for people who only have light perception. I qualify to be on the focus group and will get $75 to share what I think about this idea and offer suggestions. In addition, I somehow got hooked up to be a tester of films that will be available in my home. It's a streaming service like Netflix, but it's talk flicks for the blind. I'll get a headset of some sort to listen to TV shows and movies with extra narration, and it will not affect my family's viewing because I'll be the only one hearing it. I'm excited about being on the test panel and I'm waiting for the first kit to come in the mail so I can get started.
This week I also did a phone appointment with the endocrine doctor. I had told her of my situation regarding my skin, fatigue, achiness, swelling and joint pain, and she read up on all of my case notes. She thinks I should not change my steroids until I go to Mayo Clinic. She highly recommends I go there because everyone else is quite stumped. It appears to be NSF but my skin is not as thick as normal for NSF because I have been on steroids for so long.
I'm now doing physical therapy at home for my right arm, shoulder, and hip for bone and muscular pain. The therapist thinks it's a combination injury caused from being visually impaired, because it's not a typical injury. I'm either falling and hitting random areas, or I have something systemic going on. We're doing a combination of exercises and massage. She also recommends having this checked at Mayo Clinic.
I have a new social worker. Marsha works for Second Sense in the city. They have programs for the blind and their families. Patients and family members can go online and connect with others like them and read and learn about coping with vision loss. Marsha and I talk every Tuesday. Last week she wanted me to ask my family how my vision loss affected them. At least Alyssa was open and honest. Marsha feels my family is still in the denial phase and not accepting of it yet. I don't understand why that would take so long, but she said it's because it has so much of an impact on them. She said everybody is different and so we are talking through ways to handle it. Another girl at Second Sense offers classes and one-on-one sessions; for example, she can come to my house and teach me to cook a certain meal so that I'm not afraid of the stove or of cooking in general. I signed up for a very small, four-hour iPhone/iPad training class on March 22 that will be very comprehensive and include handouts. I'm so excited for that because I've been having trouble with my devices.
There's a park district service available for disabled people that offers a number of athletic classes that include a one-on-one coach/guide. For example, they offer swimming, running, skiing, track and field, judo, weight lifting, canoeing, sail boating, tandem bike riding, basketball, etc. They even have a variation of soccer where the ball makes a noise so you can hear it coming. Most of these classes are offered free of charge. I'll wait to sign up until the winter is over and I'm in better shape. I'm using the treadmill about five days per week now and walking 1.5 miles each time. My PT says I should get hand and ankle weights as well. I'm also trying to eat better.
I went to the support group last Wednesday and got about 20 podcasts uploaded from Hadley School for the Blind. They are hour-long seminars on different tech topics like PowerPoint, Facebook, etc. One guy is going to send me some iPad game apps for the blind, and I shared information with the group about the eye transplant seminar.
Tyler now has a 3.2 or 3.3 GPA at school, which is good. Alyssa has As and Bs just like Tyler. They are neck and neck. Alyssa's biggest highlight now is that she tried out for the play Oliver, and she will be singing five songs and playing the role of a doctor with some talking parts, so she's excited. The show is in March. This improv group is in addition to her soccer, girl scouts, and tap dancing. She seems happier lately. Tyler is coming home next weekend for his job interview at Great America. He wants to work there for the summer and take a family vacation to Disney World. I think my son is the forever child, like me.
Steve has been nice and that makes life so much nicer. He got me two Starbucks coffees this week, he got me my favorite Fannie Mae chocolates for Valentine's Day, we went out to eat alone for the first time in a long time (I'm not talking months, I'm talking years), and we even had some bottles of wine together. I bought him a massage in return. It was a good week. He's still working out about five days a week, eating healthy with no fast food, and he's lost 15 pounds already. He wouldn't even eat the heart-shaped pizzas that we got for Alyssa for Valentine's Day at Lou Malnati's.
My social worker said my job this week is to talk with my friends to see how my vision has affected them. This is something that has weighed heavily on my mind because I had never had a blind friend in my entire life either. I know most people are afraid of or uncomfortable with blind people. I used to be, but now I'm not scared of myself. I know some people are worried about feeling responsible for me, and I understand that it's harder and more time consuming for them. I'd love to hear your thoughts.
I can't wait for this winter to end. I look forward to sunnier and warmer weather. I wish we were traveling for spring break but we will probably take a June or July vacation. I've been listening to audio books and have really found that as a good escape this winter. If you have any good books to recommend, let me know.
