I'm happy to say I found something even better than CBD. It is a hemp product from Feel The Reaction and I started using it about six weeks ago. I use a lotion called Relief Pain Cream on my skin twice a day for itching and pain, and I also put a drop of Full Spectrum Extract tincture under my tongue for pain, to reduce pressure on the optic nerve, and hopefully to reduce tumor size. Tyler also started taking it. I like the products so much that now I'm a distributor (more on that later).
I started seeing shadows again after I started using this product. The last time I saw them was before I started dialysis. I've seen shadows probably about 15 different days since early June. When I have them, if I look straight it appears I'm seeing light downward and I can count fingers, see the flashlight on the phone moving around, a head moving around, and anything flashy like the nozzle on the sink. This can really help me navigate better if it improves, and it's helped me with anxiety, stress, and sleeping. I'm looking forward to getting my next set of scans to see if anything else has changed. I'm hoping for tumor shrinkage. At least I found a product that helps and is not an opioid. I think this will be our future.
Neurologically, I was getting some headaches but they seem to be under control now that I'm on Full Spectrum Extract. I did have a few episodes recently, like falling, because of a nasty antibiotic I'd been taking for a bladder infection.
Bladder infections are my continuing issue. I never realized how severe they were until I found out the bug that I was getting in my urine each time is a superbug worse than MRSA, because it's fatal if it moves from my bladder, and now I'm immune to all oral antibiotics to treat it. That scares me.
The latest episode started last month. After 10 days of symptoms and calling my doctors, awaiting an antibiotic or a plan of what to do, they finally put me on something to cover me for the weekend but I did not make it until Monday, unfortunately. I woke up that morning (June 17) with a 104-degree temperature, severe headache, confusion, and what felt like brain spasms. I called my infectious disease doctor at home (it was Father's Day) and he told me to have the doctors call him as soon as I got to the hospital. Steve was out of town so Tyler drove me to Lake Forest ER.
It was very scary not only for myself but for Tyler as it was either a quiet morning at the hospital ER or they were very concerned with me, because I had seven people in my room working on me all at once. There was one on each arm trying to draw blood, one putting a catheter in, one was taking my blood pressure, and others - it was just crazy. I had a lot of different scans to make sure the bug hadn't traveled to my lungs or outside my bladder-kidney area, and was admitted for 5-6 days for antibiotics through a pic line.
Coming home, I felt good until the home health team arrived and started an even more toxic antibiotic. After four days I made them stop - I was falling, walking crooked, crossing my legs over each other, mumbling, had a horrible headache, and I was lost in my house - it was so weird.
I went back to see the infectious disease doctor and my blood came back negative, so I'm not on any antibiotics now as it appears the infection is gone, for now, so that's good. Unfortunately, the next time I have a bladder infection, I have to go to the hospital and they'll have to figure out a different drug for me. I'm kind of aggravated it got to this point after nearly three years of continual bladder infections with the same superbug.
I updated my neurosurgeon on the neurological problems I had, and I just got signed out of PT on Saturday. I'd been doing OT and PT for three weeks to strengthen my balance and motor skills. Also since the toxic antibiotic, my memory is not as sharp as it used to be. I'm forgetting things now and I always used to have a great memory. I need to start using brain games on my phone or something. I'm still not 100% neurologically and I'm going to ask my doctor about that.
This past Wednesday I went to the pain clinic and got another injection to treat recurring pain from an injury I had a couple years ago (walking into a truck). They told me that my sacroiliac joint (in the pelvic area) is so small that when it inflames, I get severe nerve pain. The injection is working great so I can get back to exercising again. Before that I had been exercising and active until the beginning of June, but had to stop when they thought I was aggravating the joint by exercising so much.
Interestingly, the pain clinic said they no longer prescribe any opioids; they would rather give medical marijuana, which will be legal in Illinois in January. I've been off opioids since the end of May 2018, a week after I started on CBD, and I'm still off them with the hemp product.
One concern is I've now lost six more pounds and weigh around 90 lbs. I don't know if it's from my stomach shrinking and I feel like I can't eat as much, or what. But I still eat what I normally eat, or more, so I don't get it. That's 15 pounds lost in a year. It's another question for my doctor.
Now for the fun part. I was able to take my vacation to Florida in June starting with attending my niece Olivia's high school graduation. I was so proud of her as she graduated with a 4.4 GPA and got $80,000 in scholarship money. Then I spent a week with Sheila and Barry in Clearwater Beach. My brother Jeff was able to join us for part of that visit, too, and then he and I went on to my sister's house in North Port.
It was such a great, relaxing vacation in Clearwater. We walked every day about 2.5 miles on the beach, and I was even able to walk by myself by following the shoreline, without holding on to anyone, because the sand was so flat and clean. It was awesome! And we would jump in the pool and tread water and just talk and stuff. The condo was just perfect and we went out for dinner several nights. My nieces came out one day and Alan and Barbi joined us another day. I was glad to meet those two because I'd planned to see them (with Sheila and Barry) in London for a few days in July while I visited Michele, but unfortunately I had to cancel that trip when I got my bladder infection. Thankfully I had trip insurance so I got a refund. So I have to plan another trip to London, and I would still also like to go to Texas this year.
I finally went to see Elton John in February. Vicky, Carrie, Tabetha, and I started the evening with dinner and then spent an hour in traffic trying to cross the street to the concert, but the concert was amazing. We wore a variety of Elton John glasses (mine lit up) and he dressed his flamboyant part. He put on a phenomenal show - about three hours long with no break.
I'm always searching out a good concert and plan to go to Ravinia still at least once this season, but definitely for Steely Dan. I've also seen some local entertainment and I'm going tonight to see a Beatles band called Kaleidoscope Eyes. And, I have a date planned at the race track in August with my sorority sisters - an annual event that's so fun. Lori Pritchett, Carrie, Vicky, Jeryl, Patti, and I will sit in a booth with a table there, and I'm hoping to get together with them one other day this summer. I get out any chance I can after being cooped up so much over the winter and spring - I don't say no to anything!
The big news is from March. Steve went to Hawaii with Tyler and Lindsay first class for a week, and I went to file for divorce. When he returned, I told him I thought it was easier for me to be the one to initiate the divorce because it would not make him look bad leaving a sick, blind wife. I told him I thought it was best for us to part ways and hope that we can find happiness. It's been a long 10 years of medical issues, then blindness, and then the tragic loss of Alyssa.
So, as for now, we're busy going through boxes and purging the incredible amount of crap we've collected over 20 years. As it gets closer we'll paint and re-carpet and put our house on the market, and I plan to stay local in an apartment. I've actually found one that I really think would work for me but I'm not sure what the money would allow at this point. I just take one day at a time because it's going to be a long year, waiting for the divorce to be finalized, and I can't control all the fine details for the future.
Tyler turned 24 earlier this month. I felt so bad telling him about the divorce but I know he knew our marriage was not a normal one. He pretty much stays neutral but I feel like he's lost his sister and now with his parents splitting, he must be very sad. As for therapy, I still remain the only one that sees a therapist regularly though Tyler has gone several times.
My sister Robin, the healthy one, has been ill lately. Back in June, when we were visiting her in Florida, she was having a lot of stomach pains and nausea. It kept getting worse and she couldn't eat anything as it would cause her to double over in pain. She changed doctors 2-3 times trying to find a diagnosis, and she ended up in the ER. They did a CT scan and told her she had a perforated bowel and needed emergency surgery, so they took her by ambulance to a bigger hospital. The doctors told her it was very risky, she would most likely wake up with a colostomy bag, and if any stool in the bowel leaked out into the abdomen, it could be fatal. She was freaking out and her husband was out of town. Now for the good news: When they opened her up, the bowel looked perfect. It was as if there had been a miracle because they have absolutely no explanation for it (unless they read the wrong scan). She woke up three hours later with an incision from her sternum to her pelvic area but to good news. But, she's still having the pain and has lost like 17 pounds. She also hasn't smoked for about five weeks, so her girls and I are so happy about that. She calculates she would have spent $160 on cigarettes in that time. Now they're doing workups as the doctors are convinced there is still something wrong. They will do an endoscopy and colonoscopy, and she's waiting on a new CT scan report. She's been unable to work but is happy that all her girls were home this summer as she needed all the help. Taylor and Olivia leave for college next month.
My brother Jeff feels good, so he's happy. He had been having problems with his gall bladder duct as his pancreas is so large it was pushing the duct closed, so they put two stents in and his numbers are now better than they've ever been. He has been getting some weird headaches but there has been some stress in their household lately so he's postponed looking into that. Otherwise, he's been having fun taking the kids around to the water parks, movies, bike riding, and hiking this summer.
Regarding the hemp products from Feel The Reaction, see their website, www.feelthereaction.com, and then call me as I have more testimonials about it than you can imagine for issues like aches, pains, high blood pressure, anxiety, itching, MS, fibromyalgia, any autoimmune disorders like Chrone's disease, any inflammatory disease, sleeping issues, and tumors. You can order directly as a "guest of Kim Gillespie" from www.mylifessimple.com/dragonfly.
Thank you to those who helped me start the process of going through the house and boxes and purging. My cousin Debbie wrapped up my entire china cabinet and my friends Rianne and Lisa have also offered their time, for example. Thank you to Adeline for being my home IV infuser - she was so excited because she's a nursing student. Thank you to everyone who has driven me to therapy and other appointments. Fortunately there have been fewer this summer. And of course I thank Suzanne, who is not only my great friend but also my #1 right arm.
Good luck as you send your kids off to school and college and with your graduates finding employment or developing in their careers. Hope we have an Indian summer since the season started so late this year. Otherwise, anytime I'm called, I'm free to get out. I'm up for anything.
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