Most of you are already out enjoying the start of your summer. The Gillespies have three more days of school and then we will be there as well.
Tyler only has to take two finals and then he is through. He'll graduate Friday from Libertyville High School. He is scheduled to start college in the fall at the Univ. of Wisconsin Whitewater with the major being undecided. He is very excited and really looking forward to college, and knows at least six guys attending his school this fall. It's also only a 45-minute bus ride to UW Madison so he can attend their football games, and he has several friends attending there as well. As for his plans for summer, he still has been playing soccer and is planning to try out for the college team. Hopefully he'll make it as his last year and a half he's been unable to play in high school due to sports injuries.
Alyssa will be attending a bible day camp for a week and will do a one-week overnight camp in Wisconsin with six of her friends, with her focus being on horseback riding. She is thoroughly excited as each girl will be given a horse to take care of for the week, including grooming, feeding and everything. Every day they get to ride their horse for an hour. She will also get to do archery, wall climbing, and high-tension ropes. They have a lake, row boats, arts and crafts and a big campfire area. The food is incredible. They even offer Panera soups, salad bars, ice cream, slushies, soda, juices -- I could live there for a week. It's awesome. All the kids will stay in a cabin with bathroom facilities and a shower with seven girls and a counselor. She will probably also pool-hop, do arts, and lots of reading this summer.
As a family we plan to take Tyler's graduation trip June 21st for six days to Marco Island, FL. We have several free nights at a Marriott beachfront resort. I can't wait. It will be therapeutic for everybody as it has been quite a stressful few years.
I finally had someone come from the State last Wednesday who came with a blind rolling cane. OMG, I swore I would never hold one of these as long as I lived. My palms were sweating as she told me how to navigate my way through the house. She told me that after my next lesson or two, I would be able to walk several miles a day independently. Unfortunately, she did not bring me a cane to keep, and said it would take 4-6 weeks to order one, which is when she will come see me next. Whoever thought the process could take so long? I am on a search to purchase my own cane as a backup as she said they break easily and sometimes don't even last a year. Medical supply stores around here only carry cheaply made versions with a hard tip at the end, so you need to lift it continually to find your way, whereas the roller one you just push. I might just get one like that because I can get it quickly.
I had an appointment also last week with the Lighthouse for the Blind and was quite impressed with their services, except that I need to go to them for any assistance or training because they will not come to my house. In addition, all of the equipment is available for purchase only. They do not have a budget to give any equipment free of charge or discounted. I even had to pay for the appointment, even after Medicare and our health insurance. I will definitely return, yet I'm glad that I'm already hooked up with the State.
My caseworker from the State is scheduled to return this Tuesday. Hopefully she will have some of the equipment the State has ordered for me, yet she has much less memory due to multiple strokes and has been having trouble remembering what to bring and even how to use the equipment. If this visit goes as usual, I've decided to ask for a different caseworker because I have not learned much from her and I only have until October to complete all of my training.
This past week has not been very kind to me. I have had dizzy spells, headaches every day, and just to top it off, my sutures popped from my gyne surgery and my prolapsed bladder, etc., has returned. I am thoroughly depressed because I was finally able to go to the bathroom like a normal girl and now it's all back to the way it was for the past year and a half. Sadly, I have to have another surgery in another six weeks to try again. The next surgery will be a lot more involved as he will have to use a different technique, but hopefully it won't be too bad. I guess I was bragging too much about how easy everything was going and how finally I had a surgery without complications. I saw my doctor for my post-op five days prior and he said, "I hope you didn't just jinx yourself." Little did I know, I should have kept the thought to myself.
With regard to my headaches and light-headedness, it's hard for me to tell if it's coming from my eye or my brain. My vision has been even worse this past five weeks and I spent at least three of my last seven days in the dark. I see the eye doctor on June 10. Hopefully my tumor has not grown or changed and he will have an explanation. When I had my pressure checked at the Lighthouse again, it was high, and they're worried that I need to add more medication to treat the glaucoma. They told me the pressure could be damaging my optic nerve as well.
I spoke with my new internist, Dr. Jain, who ordered me a full set of MRI scans just to rule out any changes, so I will have full brain and spine and abdominal scans the week of the 17th, before we take our trip. Six hours in the MRI machine -- that should be fun. Then it's off to Florida.
Another added bonus the last five weeks, as my vision has worsened, is that I have been falling more -- a total of three times. I have torn my rotator cuff, hurt my elbow, sprained my wrist and thumb, and hurt my right hip. I've had two steroid injections in my left shoulder and two in my right hip. It's possible that my left ear deafness is also making my balance much worse and contributing to my falls as well. Dr. Jain took me off Coumadin after these falls, as he was worried I could fall, injure my head and cause a bleed -- which is much more dangerous than a blood clot. Also, we stopped all the weekly lab work. He had a physical therapist come out to do an evaluation on balance and safety of my home. The PT noticed my balance to be off, and in addition found some areas of concern at my house, e.g., areas of cracked sidewalk in the front walkway, wires laying on the floor across the family room, multiple shoes and backpacks strewn around, chairs are not pushed in, cabinet doors and the dishwasher door left open. She said it would be helpful to keep our home more organized as it is very important for blind people to know where everything is so they can navigate their home safely. This is an area that we are still working on improving.
In terms of organization, if anybody knows anyone in the Libertyville area on a personal level who wants summer work to help me with organization or be a personal aid this summer, I am looking for help and want to hire somebody that I can trust, as I'm afraid to let a stranger into my home who could walk out with whatever they want and I would never know it.
Also, if anyone knows of someone with a recumbent bike that they want to sell, I am very interested in buying one. I tried walking on the treadmill and did okay as I hung on, but it makes me somewhat dizzy with the motion and nervous to do it when no one is home. My doctor feels I need to be active due to my history of blood clots and recommended a recumbent bike. I'm completely down to taking the amount of steroids that my body would make on its own, but have not shed any of the 20 pounds that I gained over the last year. My endocrinologist said it could take months, if not a year, to lose the weight because I've been on high-dose steroids multiple times in my life, which makes it harder to lose the weight. She also said due to my weight, height, and level of inactivity, to maintain my weight, I can only eat 800 calories a day. Therefore, I really need to start moving.
I did receive a small gadget, two times the size of an iPhone, that plays books and has the capability of playing computer files, podcasts, MP3s, magazines, etc. And, the nicest part is, the books I upload from the computer (with the help of some friends) are free. I no longer have to wait for library books to come in. I have been very busy reading, or shall I say listening, to books. It's really nice. The device has a sleep timer, you can hook it up to external speakers and, in addition, the State can send me tapes from their library that I can play on it. I just got the first of a series of 20 books that is really good.
As for Tyler's cough, I spoke with a pulmonologist in Vernon Hills. Sadly, their office is closing on Friday and he does not know where his next office will be, but they are going to squeeze Tyler in sometime this week. He has a really good reputation. Alyssa's stomach has been doing really good, with no more stomach aches or throwing up. Things have quieted down, and hopefully it will not return if it was anxiety provoked.
The next few weeks, we have a lot of graduation parties to attend. My cousin Stacey is getting married on June 28. Her mother, Aunt Winnie, had a total knee replacement this past week and is now in a rehab center for a week, so she should hopefully be able to dance the night away at the wedding and walk Stacey down the aisle.
Thank God for my neighbors because I have had a very busy month of doctor appointments, on average at least 3-4 times per week. In addition, they have been very helpful with driving Alyssa to the school in the morning and picking up groceries and doing errands for us while they are out. My friends know how stressful things can be. As I've been mentioning monthly in the blog, this has been the hardest thing our family has had to go through, and not only do I need your prayers to save my health, but I need your prayers to bring our family closer together as we go through these difficult times. Sadly my vision will not return, so we all need to find a way to cope with it. We all look forward to the vacation to de-stress for a week and hopefully make some happy memories.
Hopefully sooner rather than later we can all get together this summer. Maybe we can meet at the Arlington Race Track or at a beach, restaurant or whatever, and get a group together to catch up. Time passes much too quickly and if you don't put something in the calendar, before you know it, summer will be over. Please email or call. I recently learned how to respond to an email (woo hoo!) so, surprise, I might even answer you back. Half the problem is finding the right button on the screen, but it works.
Enjoy your start of summer. Hopefully the rain and clouds will soon pass and I look forward to seeing you soon.
