I'm so happy to see that spring has finally arrived, although somedays I feel like it's an April Fool's joke as our temperatures have been extremely cool. At least with the time change and the days being brighter longer, it feels more like springtime.
I'm looking forward to testing out my new cane in my subdivision. So far I've not yet left my cul-de-sac. I still require more cane training as I've only had two lessons from the State thus far. I really could use some help with how to get around in open areas as well as in restaurants, stores, and in general.
I still, believe it or not, get lost in my own house. It even happened yesterday. I have major trouble if I'm not completely focused. I cannot even talk and walk. I need to re-learn how to multitask if that is even possible. I'm told that as time goes on it will get easier and I will have fewer accidents, but this past month I've fallen off my front porch and I walked into a brick wall. Mind you, I had my stick with me both times. The first incident, I was focusing on holding my iPad and sitting on the front porch, but I missed a step and decided save the iPad and kill myself instead. Following that bloody episode, two weeks later, returning from the mailbox, I lost track of how many steps I'd taken and crashed into the corner of the brick wall and garage door. Those are my major aches. In addition, I have countless episodes when I smack my face or shin into open cabinets, dishwashers, boxes left out, etc. Being blind, I have realized, is a painful thing. I'm a walking bruise.
Following up from my last post, I have a lot of good things to announce. I have had a brain MRI, three spine MRIs, an abdomen and pelvis MRI, a mammogram, and my teeth cleaned, and all of these results came back with good news. My brain and spinal cord tumors remain unchanged. My kidney tumors also remain unchanged or questionably/slightly larger. They found two ovarian cysts that they will watch with ultrasound. The boobs are good. My teeth are nice and clean and my gums are healthy, although I had to get a crown. So, my general maintenance once again has been completed before summer. I have one last set of appointments this Friday for an upper GI and to see the pancreatic specialist and endocrine doctor. Then, it is my intention to only see the retinal specialist for my monthly eye injection and laser treatment.
A new issue has arisen during the winter (or I just became more aware of it). I have major sleep issues. I am up almost hourly during the night and have difficulty falling back asleep. I lay on my bed a total of at least 12 hours per night, yet I sleep probably half of that. I saw a sleep specialist who diagnosed me with this new Non-24 sleep disorder, which is common when you are completely blind. Basically, my circadian rhythm (do I sound smart?) is off as I do not perceive daylight and darkness like everyone else, and have trouble telling when it's a.m. or p.m. In addition to this problem, I get out of bed very late in the day and spend most of my day feeling terribly exhausted and fatigued, with no appetite or desire to do anything. I am unable to focus. I have tried drinking more coffee, pulling all-nighters, and tricking my body into getting into a normal sleep cycle, but have yet to get a positive result. I recently started on melatonin and low-dose Ridalin (ha ha) to give me a jump-start in the late morning/early afternoon, to attempt to normalize my day.
I am pushing myself to be more active. After getting out of my routine of walking every day on the treadmill, I have just restarted it this last week. I'm walking 4-5 times per week for 30 minutes. I now believe I understand (ding ding ding) why I have never lost weight; it's because I do not move. It is hard to move anywhere fast when you are blind. I really struggled mentally with my extra steroid weight, but I have resolved to the fact that it is nothing I can control right now. I just wish my body would go back to normal.
Still more good news: Regarding my eye, even though I remain blind, my retinal and optic nerve tumors are in fact getting slightly smaller and the fluid has lessened following my monthly treatments of laser and Avastin injections. The retina is almost reattached as things have progressed so well. My shadows remain black and white and I get them intermittently and more frequently every month. Yet, it's very random and some days I see no light perception at all. I feel encouraged, yet I still am not 100% sure that I'm going to get the vision the doctors were hoping for. But I'm so happy with the progress. At this point, I will take anything.
Regarding the chronic skin achiness, fatigue and swelling issues, we are assuming this is a mild case of NSF as my skin will never be as thick as the required diagnostic level, yet there is no other diagnosis they could label me with. My question is, should I pursue this with a trip to Mayo Clinic or not, because if it is not NSF, and there is something else that could be treated that they are missing, it would be to my benefit to go. My pain in my arms and legs and joints worsens by the week and I have no plan for what I'm going to do when everything becomes intolerable and I can't get out of bed or something. I still require pain pills to get up in the morning, although I still have pain because I feel no different. I'm having trouble getting my doctors to write this in my charts because they are afraid of being connected with a lawsuit. They don't want to diagnose this. My kidney function continues to decline, so one doctor is speculating that it is causing my skin problem, but my kidney doctor argues that my function would have to be so much worse before I'd be getting the symptoms that I have. So, I'm kind of caught between a rock and hard place and have stopped looking for an answer, after seeing so many doctors and having so many biopsies and still not getting a diagnosis. Their only advice for me is to continue to wear sunscreen and avoid the sun. So I wear SPF 99 sunscreen.
As I just realized that this is my 100th blog post, I decided we must celebrate. How nice, I just happened to have planned a family trip to sunny Ft. Lauderdale with our friends, Sheila and Barry and their kids Austin and Devin. This will be as usual a much-needed break, and hopefully our Marriott Resort and Spa will come through for us with great amenities and poolside drinks and lovely weather. We bon voyage in June. Perhaps I should start doing a few sit-ups.
Alyssa had her Oliver stage debut and did a wonderful job. She really comes alive on the stage and did a British accent throughout her performance. It was so cute. She loves performing. Since then, she has signed up to be in the talent show, and she will again be on stage next Thursday. This time, she will be singing and dancing to Counting Stars with a few of her friends. Perhaps I can get a video and put it on my Facebook page like my niece Emma did of her performance. Other than that, Girl Scouts has wrapped up for the year; she has gone camping; and she plans to attend a one-week overnight camp this summer in Wisconsin. It is the non-denominational Camp Timber-lee. It is incredible. They have a zip line, high rope wires, archery, horseback riding, water slides into a lake, a pier that they swim to that has a mini bouncy trampoline so you bounce the person in front of you into the water. They sleep in cabins with bathrooms and showers. The meals come from Panera, I believe. It's hard to bring Alyssa home after a week - she doesn't want to leave.
Tyler asked if he could go there and why we never sent him before, but I said his passion was soccer. Then he wanted to work at the camp. Instead, he will be working full time this summer at Great America. He will be operating one of those games you hate your kids to play, and I'm sure enjoying about 1/10th of the experience - that being the paycheck. He comes home from college next Thursday, May 15.
Steve is looking forward to his Las Vegas trip with his father and brother at the end of May, which will be followed by the family getaway in Florida with us. So, if he complains of being stressed after that, I will just put my earbuds in.
As for myself, I've spent my winter learning how to be blind, which sounds crazy but true. There are so many resources I have found and have yet to find. I have learned a lot more than I thought possible on an iPad and iPhone, yet still need to learn the computer system. All the commands and systems are completely different for the visually impaired, and it takes a lot of practice and education to know how to operate everything. I continue to listen to podcasts and attend seminars. I recently got accepted into the Hadley School for the Blind, and once I write a paper and they critique my basic level of knowledge, they will let me enroll in a class. They offer all of their classes for free to the blind as well as free to their families. So, hopefully, I can get that started this summer. Lastly, I continue to go to a monthly support group in Mundelein. It's a great outlet for me presently. In addition, I have found a social worker that deals with just blind clients, and she has been wonderful and a good resource for me. I read about three books a week, so if you have any suggestions on books or authors to read, please let me know.
As always, thank you to everybody who has helped me since my last post, but special thanks as usual goes out to my number one helper, who I could not do without, Suzanne, who spends 12-hour days with me at least weekly at the doctors without complaining and without food or drink, and it always ends up being the nicest weather day; to Delynn for all her driving, grocery shopping trips, and hours of help weeding through a living room full of clothes to sell, return, or donate (she's my catch-all person); to my college friends Lori P., Jeryl, Missy, and JJ the puppy who came over for a day, and it takes them almost 90 minutes to get here; to Mindy, my college friend, who takes me out every week; and to Angela who is reserving a day each month just for me.
I know everyone tends to be busy with school coming to a close. Please keep in contact or call soon so we can put a date in the calendar to get out and do something over the summer. Perhaps we can all meet at Arlington Park Race Track for a day.
