My CBD continues to work for me. I no longer need to take my narcotics or blood pressure pill, I sleep better, and I'm more calm. CBD also returned my glaucoma pressure to normal (it used to be high) and if I can get it to go lower, the doctor will let me stop taking the eye drops.
In terms of my vision, I'm convinced I am going to remain blind because I've not seen shadows in a long time, and I'm starting to get pain in my eyelid and shooting pain in my eye (it's reminding me of what happened when I was losing my other eye). My eye is still bleeding into the pupil and the iris, and it gets bloodshot more frequently and very irritated. It's all side effects of the radiation I did.
Another good CBD effect is that I had my first perfect dental checkup in about 20 years - no cavities! They say it keeps the bacteria level down in your mouth. I hear they are now trialing CBD on dogs for various conditions. I'm really hopeful it will get covered by insurance soon. I could be their spokesperson - it really works for me.
Regarding my neuro status, everything was unchanged in my brain and spinal scan, although there were two small growths in my cerebellum. That can explain some of my headache and balance issues, but they said it'd be hard to determine which growth is causing the problems so he wants to just watch it for a while. I haven't noticed it worsening much and the headaches are not bad.
My pancreas was drained several times but the last few times it bled during draining. My cysts are becoming more complicated, where there are septations between them, which makes them vascular and causes the bleeding, so I may not have it drained again. The goal was to relieve pressure and nausea as my abdomen is filled with cysts where my kidneys used to be.
I've had continual bladder infections for about nine months. A specialist had me on a regimen of probiotics, antibiotics, cranberry pills, and super vitamins, yet I continue to get the same infection. My body became immune to that protocol after a year and a half. A week ago I had a CT scan but she didn't see a kidney stone or abscess. She wanted to see me in three months, but four days later I got incredible bladder symptoms again. Tomorrow she will be calling with a plan. She wants me to see an infectious disease doctor but before that she wants me to have a cystoscopy to look at my bladder and into my kidney and take specimens from both to see if they can figure out is going on. Then, the infectious disease doctor may start me on home IV antibiotics with a pic line, but I'm hoping he'll find a miracle pill that will change my urine to be less acidic or alkaline or whatever. In the meantime, I'm just miserable waiting for them to give me something.
Unfortunately, I learned the only antibiotic that had been responding causes arthritis and tendinitis. I was at a pain clinic recently and brought up the pain in my knees and three finger joints, and they said it was arthritis from my antibiotic. I was there to treat a pain that recurred from a few years back when I walked into a truck in my neighborhood; it shoots from my butt cheek up into my back. They gave me an injection of Lidocaine mixed with a steroid that isn't working yet, but I certainly hope it will. The last time it worked instantly.
I was doing well with my skin but then they found an area on my right arm that they biopsied and it came back positive, so they took a 3-inch excision from there. They also used a lot of cryo spray to freeze precancerous lesions on my arms, legs, and feet. They did one foot so much that I could barely walk on it. When I went in to get my sutures out, they told me I need more Mohs surgery on my lip. I'll do that on Feb. 28 (if not sooner), and then go to plastic surgery, and then I'll put a bag on my face for a week. It's hard to eat or talk or anything while it heals.
I started a pill for my "itching" which is actually a worm-like crawling in the layer under my skin. Anti-itch lotion has not worked and my skin doctor couldn't figure it out, but my neurologist did: I have very severe cervical stenosis (meaning the opening where all my nerves go in and out is very narrow), and my nerve sends these signals that there's something under my skin. Now I take about six pills a day and it seems to be the way to keep it under control.
My weight is still down 10 pounds and I still don't know why. They didn't see any cancer in my chest xray - I was worried the weight loss was due to that. On the bright side, it'll be a full two years in March since my last kidney removal. They have me doing abdominal and chest scans every six months for five years because I'm at high risk for recurring cancer, and two years are almost over! Another birthday is coming: in three days my new kidney ("Gladys") will be three years old.
Now for the fun stuff. In October, for Halloween, we went away with the girls to Galena for Suzanne's birthday and had a blast going shopping, to restaurants, a parade, and wineries.
In November, our family went to Lindsay William's family home for Thanksgiving dinner. It was so much fun that Tyler and I didn't get home until 11:30 pm, but Steve left earlier as he was leaving town the next morning.
December started as a bit of a wash, mostly just Christmas shopping, but the weather wasn't bad - very mild. Christmastime was very nice, especially after last Christmas. We went to church (that was important to me), and exchanged gifts in the morning, and it was like we were a family again. On Christmas Eve, Tyler and I went back to the Williams'. On Christmas Day, we all went to my cousin Curt's house in Naperville and had a fun-filled day there. We did 12 Days of Christmas, Must Be Santa, took pictures by the tree, and it was a nice and really relaxing day.
The week of New Year's, Sheila and Barry came in town and we all got together for dinner at a piano bar and were joined by some other friends, and we also went to our annual neighborhood NYE party at Angela's and Ron's, which is like a game night with fireworks and lots of food and good fun.
I went to see my sister in Florida from January 12-20. The weather was pretty sunny and nice, we went to the beach a few times, saw some movies, and went to a state park with all different types of palm trees and a swinging bridge. One day at the beach I wanted to hear the ocean waves so my sister walked me out to the end of the jetty. It was a fun challenge because the rocks were so crooked and she had to direct me with every step. We also went to another drum circle - it was the biggest they've ever seen. We danced like free birds, feeling the rhythm and having it move you. It's very fun and a kind of spiritual feeling.
Of course we went to my favorite bar and had my key lime colada that I like so much. The bar always has live entertainment and you can dock your boat right there. It's huge with tons of seating and big couches. One night it was cold there but a fire pit kept us warm. (Since I've been back from Florida, we've had several inches of snow and bitter freezing temperatures. I don't ever remember the weather being like this.)
This year for Christmas we sent to all of Alyssa's friends and female cousins necklaces that were angel wings and purple stones on a chain, with a letter telling them they can wear it or hang it on their wall to remind them of her. First I heard from Jeff, who by the way is doing well, and his two girls who called specially to thank me for the necklaces. We also sent Anthony a separate gift so he would not feel left out. Unfortunately, Cindy had a tough six months after losing both her mom and dad and turning 50.
Robin's girls, all three of them, got necklaces and they called as well. Brittney is a secretary to an owner of a landscape firm; Taylor is a freshman in college now studying business (her dream is to open a cafe with live entertainment and call it Rosanne's); Olivia is finishing her senior year of high school and working at Taco Bell; Robin works at a grocery store; and Jordan continues to race and build race cars for a hobby and he does NASCAR marketing for work.
Steve is doing the same sales position and his territory changed so he now covers Wisconsin and Chicago (no more Minnesota). Tyler was recently promoted in his company. It was bought out by another company and he's dealing with bigger and higher quality customers now. He was one of a few chosen to stay on from the old company. He's still with Lindsay, who finishes her Master's in August.
This past Friday I went to a concert with Tyler, Lori Pritchett, and her boyfriend to see American English (a Beatles band) and Abbamania. I'll also see Elton John on Feb. 16 with my neighbor Tabitha and two sorority sisters, Carrie and Vickie. I'm sad to know Elton will tour no more but I'm so glad I'm going to this concert. The tour is supposed to be the best he's ever done.
Every night I dream about Alyssa. The two year anniversary of her passing is this month on the 27th. It's hard to believe that it's been this long. Not a day goes by where I don't think of her or get reminded of her, and I continue to dream of her every night since the day she passed. If I truly am having heavenly dreams, we are all going to love heaven. Everyone that has passed is in my dreams, but also those who are living are there, and the best part of it all is anyone who ever looked sick or aged prior to death now appears young, vivacious, and the best I ever remembered them looking.
The bereavement process, I think, never ends when you lose a child because it's like losing a piece of yourself, like an amputation. It's like you're a new person but lacking a large part of your past. When we went to the piano bar before New Year's, the pianist played the song "I Will Survive" by Gloria Gaynor, and I realized that would be my motto.
On a good note, I'm hoping the groundhog is right and we do get an early spring, as spring makes me a happier person. Once everyone is out and about more, I'm hoping to get together with more friends. I'm starting my kickoff with a neighborhood Superbowl party today. My plans for travel this year include Florida, London and Texas, a I'm looking forward to that. And this is my year to get fit. I started walking three miles every day and now I'm getting hand weights to help with balance.
Big thank you to all of you who helped with all of my driving (you know who you are). Always know I couldn't do it without you.
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