Thursday, December 19, 2019
Heartbreaking news
On Friday, December 13, Kim had the ERCP procedure done at the University of Chicago Medical Center. Sadly, during the procedure Kim experienced a bleed near her brain stem that caused irreparable damage. She remained on life support until her family could arrive - Robin and her family came from Florida, and her brother, Jeff, from Colorado. After heartwrenching goodbyes, Kim was removed from life support and passed peacefully surrounded by loved ones on December 15.. A visitation was held on Tuesday, December 17. Her nieces put together a beautiful video tribute that you can see HERE. On Wednesday, December 18, there was a service followed by an open house at her home. So many friends and family came to say their goodbyes, as she had touched so many lives with her beautiful spirit.
Thursday, December 12, 2019
Heading to the hospital and hoping to return to a normal color soon!
Kim is on her way to the University of Chicago Medical Center where she will be admitted and then undergo a procedure tomorrow called ERCP (endoscopic retrograde cholangiopancreatography). The procedure combines upper gastrointestinal (GI) endoscopy and x-rays to treat problems of the bile and pancreatic ducts. Your bile ducts are tubes that carry bile from your liver to your gallbladder and duodenum. As Kim explained in her last post, her duct is blocked causing bile to build up in her liver. Because of this she is extremely jaundiced. Hopefully they will be able to drain some of the bile during this procedure and decide what to do about her gall bladder. She is hoping that they will choose to remove it rather than insert stents like her brother's doctors did initially. He said they were very painful and did not ultimately solve his problem.
After she has the procedure, she will share results and next steps.
Saturday, December 7, 2019
Hoping for a fresh start
My CBD has not been good to me. In August I went to the skin doctor and found out I had three areas of basil cell cancer rapidly growing and the worst was on my foot. That Mohs incision went from the bottom of my toe all the way to my ankle. I was unable to walk on that foot or wear shoes for several weeks, and had to keep it elevated as they used what little bit of tissue I had remaining on the side of my foot to close the large hole. I was so afraid it would open up but I followed all their instructions, so it didn't.
I saw the eye doctor again and he didn't see any change in my eye even though I told him I see shadows sometimes (when I look straight, it's down to the left). He said it's because when my eye pressure in that area goes down, the shadows turn up. I wish the pressure would stay down because the shadows make me feel existent again, even with the little bit I can see.
I saw the neurosurgeon in October for a routine scan. When he compared them in his office he said there was no change, yet when I read the report online a week later, the radiologist had reported to him the tumor on the left side of my brain doubled in size and has edema (swelling), and my right-side tumor has increased by 50% and has more edema. They also both show more vascular changes, which is not good, because it's the blood vessels that feed the tumors. I also have two cysts that have enlarged as the tumors produce fluid. So, I was a bit worried about that result and called the doctor, and he told me he wasn't too concerned because neurologically I hadn't had enough change that he would open up my head. I mentioned that I get a lot of headaches and he said that's from the tumors and he doesn't want to mask them, but I should let him know if I notice any other signs like falling or balance. My balance sucks already so it's hard to tell if it's worse, unless he means when it's so bad that I tip over. I'll never walk straight because of my vision and hearing problems - together they make you walk crooked.
Next, I went for my routine checkup of my abdomen and pelvis to make sure there is no spread of my cancer, as I'm high risk still from my kidney surgery 2.5 years ago where they believed some cells were left behind. I was lucky enough that the cancer hasn't spread but instead I found out I have a clogged bile duct and enlarged gallbladder and liver. My liver enzymes in all my labs (bilirubin, etc.) are off-the-chart elevated. I hadn't had blood drawn since July so this problem could have been going on for quite a while. But I finally have a reason for all my weight loss (I've lost four more pounds). The symptoms are extreme fatigue, unexplained weight loss, loss of appetite, nausea, yellowing of the skin, itching, muscle aches, and gallbladder pain. I've had all of that.
The itching is making me crazy, I spend 3-5 hours per night itching from head to toe. Nothing helps and I can't sleep, focus, or even watch TV - it's horrible. It comes from my toxic enzyme levels and being jaundiced. This is a worse feeling than the itching problems I've had before.
The reason I have the clogged gallbladder duct is because my abdomen has become filled with cysts that are compressing my stomach and go all the way up to my sternum. There are so many cysts that they have clamped the duct shut.
So, I went to the infectious disease physician on Monday and we repeated the blood work, and since the prior week my labs have even elevated further. This Friday I will be seeing a general surgeon and I'm still waiting to find out what day I'll see the gastroenterologist. I have to discuss it with different people to make sure I'm doing the right thing, and I'm told the doctors can't do anything until my latest bladder infection is gone (I've had two since my last post but it's a different bacteria than I normally get).
My brother Jeff was shocked to hear my scan report. He has had the same issues since April and it's been nothing but problematic. He's been in the hospital 5-6 times and had sepsis and a severe gallbladder attack. They told him with this issue you'll start to produce gallstones, and they found more than 100 in him. Based on his experience, I am going to propose to the doctors that they just remove the gallbladder straight away, and put a stent in down lower. I have to convince them that it's too dangerous to do otherwise. I don't want to repeat what happened to my brother.
They say once you have the surgery or stent done, your levels will go back down and your energy, weight, itchiness, skin tone, etc. will all improve. Unfortunately, I already have liver damage, which apparently is what happens from the levels being so high. But, what really sucks is it'll really mess up my holidays if we can't get it corrected before then. To end my health summary on a positive note, my mammogram was fine. Let's hope my dental appointment next week is fine, too.
Summer went way too fast. It feels like we only got eight weeks this year. Thanksgiving was uneventful - just the three of us and our Boston Market dinner, plus I invited one of my friends to join us as she had no plans, and she and I also went to a movie.
I hired a girl named Chris to help me organize. She's best friends with my cousin Debbie, we get along great, and we are both good purgers so we're getting a lot done. She comes once a week and has been very helpful. We've been working very hard on packing and going through boxes. We had about 20 boxes of stuff on the garage shelf and I only have three left. Then, I'll start going room to room to make sure everything is organized. I'm so happy to find somebody that I trust because she'll help me when I move as well.
As for the divorce, our attorneys are just trying to come up with an agreement that's fair, yet it seems a bit one-sided as of now. We plan on putting the house up for sale in April. So much to do, so little time!
I got together already with the neighbors for my birthday and it was very nice. We brought in food, had lime martinis and wine, and my friend got an incredible cherry pie that tasted like my grandma used to make. Needless to say, there were lots of nice gifts like a sweater, nice shirt, Bluetooth speaker, and body spray. I'm getting together with my other group of friends next Friday the 13th and we'll again bring in food and just hang out. That's easier for me than going out because I can hear better that way. So if I do end up in the hospital over the holidays, at least we will have already celebrated my birthday. God forbid I miss the celebration!
I also did the race track with my sorority sisters this summer and we all plan to get together again after the new year. I went with Vivian to see Steely Dan on Sep 2nd. It was my sister Lisa's birthday so I went there in her memory because she took me to that concert about 20 years ago.
Tyler's job is going great; he's been there for over two years. It'll be nice when his friend Phil comes in to visit him around New Year's.
I can't wait to take care of my current medical issue so I can make a plan to go south and see my sister Robin, cousin Debbie, and possibly get together with Sheila and Barry. My other trip that I'm looking forward to is going to London and Paris in late May or early June, yet my friend who lives in London has been quite ill so I have not bought tickets yet.
I have not Christmas shopped at all yet. Steve will be going to Michigan prior to Christmas and Tyler and I will spend Christmas Day with my side of the family. This will be our third Christmas since Alyssa has passed but thankfully I still see her in my dreams.
I'm always thinking of anniversaries of my family members passing. Most of my family died rather young: Alyssa at 14, dad at 30, sister Lisa at 36, brother Steve at 49, and mom at 58 and 23 days. In 30 days I will have outlived my mother. It's hard to believe all their lives were so short, and here I am, looking to begin my fresh start at the age of 58!
Happy Holidays and Happy New Year to everyone! Many blessings in 2020.
I saw the eye doctor again and he didn't see any change in my eye even though I told him I see shadows sometimes (when I look straight, it's down to the left). He said it's because when my eye pressure in that area goes down, the shadows turn up. I wish the pressure would stay down because the shadows make me feel existent again, even with the little bit I can see.
I saw the neurosurgeon in October for a routine scan. When he compared them in his office he said there was no change, yet when I read the report online a week later, the radiologist had reported to him the tumor on the left side of my brain doubled in size and has edema (swelling), and my right-side tumor has increased by 50% and has more edema. They also both show more vascular changes, which is not good, because it's the blood vessels that feed the tumors. I also have two cysts that have enlarged as the tumors produce fluid. So, I was a bit worried about that result and called the doctor, and he told me he wasn't too concerned because neurologically I hadn't had enough change that he would open up my head. I mentioned that I get a lot of headaches and he said that's from the tumors and he doesn't want to mask them, but I should let him know if I notice any other signs like falling or balance. My balance sucks already so it's hard to tell if it's worse, unless he means when it's so bad that I tip over. I'll never walk straight because of my vision and hearing problems - together they make you walk crooked.
Next, I went for my routine checkup of my abdomen and pelvis to make sure there is no spread of my cancer, as I'm high risk still from my kidney surgery 2.5 years ago where they believed some cells were left behind. I was lucky enough that the cancer hasn't spread but instead I found out I have a clogged bile duct and enlarged gallbladder and liver. My liver enzymes in all my labs (bilirubin, etc.) are off-the-chart elevated. I hadn't had blood drawn since July so this problem could have been going on for quite a while. But I finally have a reason for all my weight loss (I've lost four more pounds). The symptoms are extreme fatigue, unexplained weight loss, loss of appetite, nausea, yellowing of the skin, itching, muscle aches, and gallbladder pain. I've had all of that.
The itching is making me crazy, I spend 3-5 hours per night itching from head to toe. Nothing helps and I can't sleep, focus, or even watch TV - it's horrible. It comes from my toxic enzyme levels and being jaundiced. This is a worse feeling than the itching problems I've had before.
The reason I have the clogged gallbladder duct is because my abdomen has become filled with cysts that are compressing my stomach and go all the way up to my sternum. There are so many cysts that they have clamped the duct shut.
So, I went to the infectious disease physician on Monday and we repeated the blood work, and since the prior week my labs have even elevated further. This Friday I will be seeing a general surgeon and I'm still waiting to find out what day I'll see the gastroenterologist. I have to discuss it with different people to make sure I'm doing the right thing, and I'm told the doctors can't do anything until my latest bladder infection is gone (I've had two since my last post but it's a different bacteria than I normally get).
My brother Jeff was shocked to hear my scan report. He has had the same issues since April and it's been nothing but problematic. He's been in the hospital 5-6 times and had sepsis and a severe gallbladder attack. They told him with this issue you'll start to produce gallstones, and they found more than 100 in him. Based on his experience, I am going to propose to the doctors that they just remove the gallbladder straight away, and put a stent in down lower. I have to convince them that it's too dangerous to do otherwise. I don't want to repeat what happened to my brother.
They say once you have the surgery or stent done, your levels will go back down and your energy, weight, itchiness, skin tone, etc. will all improve. Unfortunately, I already have liver damage, which apparently is what happens from the levels being so high. But, what really sucks is it'll really mess up my holidays if we can't get it corrected before then. To end my health summary on a positive note, my mammogram was fine. Let's hope my dental appointment next week is fine, too.
Summer went way too fast. It feels like we only got eight weeks this year. Thanksgiving was uneventful - just the three of us and our Boston Market dinner, plus I invited one of my friends to join us as she had no plans, and she and I also went to a movie.
I hired a girl named Chris to help me organize. She's best friends with my cousin Debbie, we get along great, and we are both good purgers so we're getting a lot done. She comes once a week and has been very helpful. We've been working very hard on packing and going through boxes. We had about 20 boxes of stuff on the garage shelf and I only have three left. Then, I'll start going room to room to make sure everything is organized. I'm so happy to find somebody that I trust because she'll help me when I move as well.
As for the divorce, our attorneys are just trying to come up with an agreement that's fair, yet it seems a bit one-sided as of now. We plan on putting the house up for sale in April. So much to do, so little time!
I got together already with the neighbors for my birthday and it was very nice. We brought in food, had lime martinis and wine, and my friend got an incredible cherry pie that tasted like my grandma used to make. Needless to say, there were lots of nice gifts like a sweater, nice shirt, Bluetooth speaker, and body spray. I'm getting together with my other group of friends next Friday the 13th and we'll again bring in food and just hang out. That's easier for me than going out because I can hear better that way. So if I do end up in the hospital over the holidays, at least we will have already celebrated my birthday. God forbid I miss the celebration!
I also did the race track with my sorority sisters this summer and we all plan to get together again after the new year. I went with Vivian to see Steely Dan on Sep 2nd. It was my sister Lisa's birthday so I went there in her memory because she took me to that concert about 20 years ago.
Tyler's job is going great; he's been there for over two years. It'll be nice when his friend Phil comes in to visit him around New Year's.
I can't wait to take care of my current medical issue so I can make a plan to go south and see my sister Robin, cousin Debbie, and possibly get together with Sheila and Barry. My other trip that I'm looking forward to is going to London and Paris in late May or early June, yet my friend who lives in London has been quite ill so I have not bought tickets yet.
I have not Christmas shopped at all yet. Steve will be going to Michigan prior to Christmas and Tyler and I will spend Christmas Day with my side of the family. This will be our third Christmas since Alyssa has passed but thankfully I still see her in my dreams.
I'm always thinking of anniversaries of my family members passing. Most of my family died rather young: Alyssa at 14, dad at 30, sister Lisa at 36, brother Steve at 49, and mom at 58 and 23 days. In 30 days I will have outlived my mother. It's hard to believe all their lives were so short, and here I am, looking to begin my fresh start at the age of 58!
Happy Holidays and Happy New Year to everyone! Many blessings in 2020.
Tuesday, July 23, 2019
Rolling with the changes
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.
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.
Sunday, February 3, 2019
My motto: I will survive
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.
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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