Test Results....Finally

It took two weeks and a call to the Patient Experience department but I have finally received information about my tests.

Two weeks ago, I went to Mayo for a heart catheterization, pulmonary function test, and a liver biopsy. 

They determined from the liver biopsy that we will keep watching it but there is nothing we need to do now. There is some thought the damage could be related to my 2023 adventure of lots of medicine and episodes of sepsis.

While it was no surprise, the pulmonary function test showed that my lungs are trash. I have with severe restriction on total lung volumes, which is not ideal. This explains the shortness of breath. My doctor says we can try a few things and see if they work. He isn't completely optimistic but as we both agreed, we will not know unless we try. In two weeks, I am also going to talk to Palliative Care about some other interventions as well. Of course with everything, the insurance company gets to decide, which is definitely a good idea. We are going to keep watching. It was disappointing that I had to reach out to help get an answer after two weeks but the doctor did not seem upset, which was good. 

I have lots of appointments between now and mid December but then hopefully we will get a break for a few weeks.

For tonight . . . I'm just sayin' XOXO

Feeling Frustrated Rant

This week I headed to Mayo for one test, to meet my new pulmonologist, and then came home and had a virtual visit with a doctor today.

In my last post, I ranted about the challenges of working through the medical system. This blog post continues that rant.

The test I did on Monday was to check the status of my liver. Over the last several months, I had noticed my liver enzymes rising. I had asked my oncologist about this for the last few visits. He wanted to wait and see. I finally decided to reach out to hepatology. When I met with them last week, they decided they wanted to start with a test that is minimally invasive. When they scheduled the test, they also scheduled the follow-up appointment to review the results. The problem is those two things are three months apart. The good thing is the tech who did the test shared the readings so I could do my own research for next steps. I messaged the doctor yesterday (after giving them one day to reach out) to ask them for the official reading and next steps but still nothing. 

On Tuesday, I met my new pulmonologist. My last one was a fellow and he graduated. The first thing I asked the new doctor was if he would be there for a while, he responded, "I hope so." After going through my history and my chart, he is very concerned about my blood clot combined with my shortness of breath and cough. This is a 180 from the direction originally.  He has ordered three tests so that is another trip back to Jax. I knew he would want one of the three so I do not understand why they didn't do it before I saw him. I am glad he is checking things but why wasn't I sent to this office. I requested the appointment myself.

Then my follow-up visit today was with my urogynecologist. The appointment was about four minutes. He changed his mind about my course of treatment twice, not because of new information but seemingly randomly as he began to remember more details of my case. Additionally, I sent him a copy of my blood work because it showed elevated white blood counts. He immediately told me he wasn't the one to send them too. He was the fourth doctor I shared the results. I shared with him because he is treating me for recurring UTIs that have presented with no symptoms. When I sent the results to my infectious disease doctor, he said with no symptoms just keep watching. It seems that everyone keeps forgetting that my first four hospitalizations presented with no symptoms of an infection. I agree it may be nothing but given my year, I would think someone would have ordered a urinalysis but what do I know?!? 

Today, I reached out to my original palliative care doctor. In the past year, they have added two new doctors to his office and I have been assigned to them. While I like the two doctors, with so many things going on right now, I really wanted to talk to my original doctor about some very specific things. His nurse, who I have never been a fan of, basically told me the new doctors are good and I should stick with them for continuity. With that theory, I should have never been assigned to new doctors because my original one has been seeing me since 2020. I cannot stand people who use in the moment arguments rather than being consistent.

Two of my doctors this week answered their phone while meeting with me. I am over phones interrupting meetings, meals, and conversations. It is one thing if there is an emergency but seriously can the texts and calls wait 15 minutes?!?

If doctors do not want patients to use Dr. Google then they need to do better responding to messages and getting patients in before three months away. In addition to myself, so many people I know get told the next available appointment is three months or more away (people and pets). This is ridiculous and unacceptable. Doctors need to do better. 

A few weeks I decided to start moving forward with the specialists who I need to see me and this week proved that was the correct decision. I really do not care who it upsets. When I look and see that I am at almost $1 million in medical bills that my insurance company and I have paid, I have to say it is significantly disappointing that I am no closer to answering the question why am I so sick this year. The best we have done is medicate me so much that I have stayed out of the hospital. While I am very happy to be out of the hospital, I want to know what is the problem and assurances it won't happen again. 

As I wrap u this blog, I got a notification of another mass shooting in America. This has to stop! I am reading a fantastic book right now about this epidemic and it includes so many logical steps that should be taken, many of them no or low cost. Maybe like my medical treatment, it is time for the everyday citizen to take a stand to minimize these situations and stop waiting for "leadership" to do something - they are too busy inflating their egos and being self-serving.  

I am so thankful to my family and friends who are on this journey with me, fighting this fight.

For tonight . . . I'm just sayin' XOXO

The World Is a Dumpster Fire....Time to Put It Out Rant

For weeks, months, years at this point, the world has been spiraling into despair. Unfortunately, every system is in a bad way. The hate in the world is exponentially increasing. This is not the world that I grew up in. It seemed for a long time there would be one area in despair but there were other areas that were going well. I continue to be ever hopeful the world will turn around. I believe in the good of people and know that love can win against hate. I trust that we can find leaders at every level who are in it for the right reasons and will govern for the people not themselves. 

The good thing that has come out of the writers/actors strike is that the talk shows are talking about human interest stories, organizations people are involved in, and giving authors time to highlight their books. I wish that we see more of the good things happening in the world because I know in small pockets there are amazing things happening. It is time that we see that on a grander level.

It seemed that everything I have tried to do recently took far too much effort than it should have. 

1. Trying to get my medicine has taken almost a dozen phone calls and I am still not sure that I will have two prescriptions waiting for me next week.
   
2. Trying to retain my BiPap machine has turned in several phone calls between four agencies and to be honest, I really do not know where we at but I was told there was an authorization until February 2024, hopefully that was correct information. How are people supposed to navigate a system and work. I was on the phone for hours handling this issue.
   
3. Trying to get a simple order delivered from anywhere. I have had two issues with Target this week and my Instacart shopper left a lot to be desired. 
4. Trying to get doctor appointments in a timely manner. I am tired of hearing that the next available appointment is in 3 months. How are people supposed to be proactive about their health when they are continually pushed off to some future time.
   
5. Trying to get baked apples to eat with cinnamon graham crackers. Who knew this would be so challenging. While I know they are not difficult to make, I am in no shape right now to accomplish that so I tried to buy them frozen - no luck. I tried to buy them from the dairy case - no luck. I ordered them tonight from Cracker Barrel and they left them off my order. Seriously, what is the universe trying to tell me.  

In positive news, mom and I went out to dinner Thursday evening to honor my Nana, Uncle Michael, and Aunt Karen - all of whom were taken too early. The weather was beautiful so we ate outside. It was nice to go out but my breathing and coughing is elevated, which makes going anywhere exhausting. The coughing and shortness of breath is getting worse when I exert myself. This week I see the pulmonologist, the urogynecologist, and get a fibroscan to measure my liver. It will be a busy week!

My favorite time is not disappointing. Mom took this picture the other night when she got home from my house.

For tonight . . . I'm just sayin' XOXO

September Medical Update....Finally

I know it has taken me a while to do the update from September 21, mostly because I have been physically and mentally exhausted.

The Mayo trip did not go as well as we would have hoped. The cancer is showing signs of slight growth. I have been lucky to have the slow growing version of this cancer. Since my body has gone through it this year, Dr. M didn't want to overreact with putting me on treatment right away. We will evaluate in December. In other news, we are adding one more thing to the list of aliments, I have a blood clot in my left lung. It appears it has been there since the end of August. It is considered a chronic clot and will most likely not go away. His plan is to put me on blood thinners for the rest of my life to prevent future blood clots. I have gone from a person who was on NO meds to know having to use a chart to track everything because it is too much. Everything is becoming too much, Mom is frustrated trying to figure out dinners that will not impact me negatively. I am taking the attitude that I do not eat enough of any one thing for it to really matter and most importantly, I will live a life without good food. If I truly followed all of the do not eat foods, I would be eating air, which is no way to live.

My colonoscopy overall went well. The anesthesiologist patient shamed me for not knowing what my stress dose of steroids was if I got in trouble in the operating room. I have had at least six procedures in that hospital this year and no other anesthesiologist question me - they seemed to know what to do. When I asked her if she could look up their notes, she said no. I said, "So once again the patient has to do everything." She replied, "Yes, it is your responsibility because you are the only one who knows you - my mother had a letter she brought with her and you need to do the same." After the procedure I ask my endocrinologist for a letter, she informed me at Mayo they have never been asked to write a letter. She gave me a letter but it really doesn't say anything more than what the anesthesiologist already had access too. I did have one precancerous polyp removed, amazing anything can grow in my body. I am cleared for another five years. During the endoscopy, he did say my throat was still pretty raw. I wonder if it is more from being on a ventilator for two weeks or the aggressive removal of the ventilator. I see him this week so I am going to ask more questions.

Because Pancake was hiding, Flapjack went with Marmalade to the vet for the annual visit. Flap does not like this Vet Clinic so we were not sure how this would go. It didn't take him long to let them know he wasn't happy. Then they continued to patient shame him about his aggressive behavior. I finally had enough and told the vet we didn't have this trouble at our other vet. I am just over patient shaming! Both cats had good check ups. Marmalade will need some dental work, she has a genetic disorder that causes her teeth to decay. Poor Marmalade and Pancake (heart murmur) have bodies as flawed as mine.

On Tuesday this week, I had a coughing fit which lead to breathing causing pain. Since it did not go away on Wednesday, I reached out to my oncologist. He advised me to immediately go the ER for evaluation of the blood clot. The ER doctors felt the blood clot was not in a dangerous position and really didn't know why this pain started this week. They sent me home, which was the first time I got to go home from the ER. They said if it didn't go away or if it got worse, come back. I saw my primary doctor the next day, which is protocol when you go to the hospital. She was not happy to see but was happy it had been 15 weeks. She continues to feel bad that someone my age is having to deal with all of this but is amazed at our overall attitude and spirit. When I told my primary doctor this week my body was very flawed, she told me, it is the body I was given so I need to honor it. 

Meanwhile, the cats are taking good care of me and trying to enjoy our shift in weather (under 100).

Pancake making sure I was OK

Marmalade trying to find the right spot

Flapjack cuddling with me

For tonight . . . I'm just sayin' XOXO

Incompetent Local Medical Care Strikes Again

I do not know why I am surprised by the incompetence of the medical system. It is a wonder that any of us make it through alive.

I was supposed to have my colonoscopy on Thursday to follow-up on the blood in my stool seen in during my May and June hospitalizations. I mean, why would we prioritize a procedure to see if a chronically ill person has internally bleeding. During the May hospitalization, I was told by the GI APRN that my case wasn't critical so I could just do it outpatient. When I saw GI in late June, the soonest they could do the colonoscopy was August 31 and there was no sense of urgency. At that time, I told them about my adrenal gland insufficiency and hypoventilation issues and inquired if the GI Center would be able to handle this or not. It is an outpatient clinic so I had concerns. I was assured by both the GI APRN and the scheduler, it would be fine. 

Yesterday, the GI Center called yesterday to ask some questions. While I had her on the phone, I asked if they had a vascular team because it is difficult to get an IV in me. She told me that they had nurses who could get a hard stick. I reiterated that the VAT team appreciates the heads and have had to be called every time since April. She dismissed my concerns and said their nurses could do hard sticks. Today, I got a call from the GI Center who said their anesthesiologist determined it wasn't safe for me to have the procedure there and I need to do it at the hospital. Shocking! 

When I called the scheduler with this update, she said she felt bad for me (but did she really?!?) and she could get me in on September 19. I said it could be any doctor not necessarily the one who I was supposed to have, to which she said September 19 was the first appointment. If I wanted the doctor I originally had, it would be January, which she agreed was too long to wait - you think!?!

I told her that I did not think it was fair to punish me since I had given them a heads up in June. I could have been spending the last two months getting to the bottom of this. I knew they couldn't handle it; why wouldn't they listen to me. She said that they were not over the anesthesiologist and when asked who is, she could not answer, then she wanted to explain the safety risks to me and why this was a good decision by the anesthesiologist. I stopped her and explained that I know the risks which is why I brought this up two months ago. I told her I ended up on a ventilator after a similar procedure in the past so I am always proactive. I told her to put me down for the appointment but I was still undecided if I was going to keep it since no one seemed to really care if I was bleeding internally or if anything else was going on. 

The local hospital system tag line of the moment is "Heal well. Live well." This couldn't be farther from their truth based on the service they provide. One doctor has no urgency to resolve anything and another has basically told me to go home, stop coming to the ER, and enjoy hospice. None of those responses fall into the "well" category. I have a few "well" statements I can think of but for now, I will refrain to keep this PG-13.

Right now, I am waiting for the hurricane to hit Florida and my primary doctor to weigh in on her thoughts. Why should I have to cancel my plans for their incompetence!

Meanwhile, two of cats are guarding me well and working hard: 

 

 

Update 8/30 AM: I talked to a supervisor at the GI Center today to find out why they do not review charts until two days before when a patient has expressed concern and found out that was not true. She called my doctor's office to educate them that they should have sent my chart when I expressed concern. She is working to get me a sooner appointment. My primary has responded to me as well.

Update 8/30 PM: The scheduler asked the doctors if they would be willing to add an extra procedure to the schedule and they said no so my new appointment is on 9/26.

For tonight . . . I'm just sayin' XOXO

Celebrating the number 7

As Sesame Street would say, this post is brought to you by the number seven!

I am happy to report that with a lot of antibiotics, which does not make me happy, I have been out of the hospital for seven weeks and counting. Additionally, July (the seventh month) is the first month I had zero overnight hospital stays. 

I am looking forward to reporting many more weeks and months without a hospital stay. I am currently trying to plan my next self advocacy move to push the doctors to look for why this continues to be a problem without getting fired by any of them. The next hurdle in this journey is to ween off the antibiotics and see if I can remain out of the hospital. A year of antibiotics cannot be good for the kidney and liver or actually just anyone in general. 

Meanwhile, I am enjoying life to my fullest. There have been two spectacular night rocket launches and of course, my babies.

For tonight . . . I'm just sayin' XOXO

2023....What a Year! I Had No Idea

When I posted my 2023....What a Year! blog on January 15, I had no idea what was ahead for me. 

Today, I celebrate my 48th birthday and I am very happy to see this day. 

Brief summary of 2023:

• 01/04: Mayo Acute Care Clinic for testing because I did not feel well and could not shake it
• 01/05 to 01/10: Back to Mayo to be admitted for a blood infection and UTI; during this stay they removed my port because they were afraid it was the cause of the infection - it wasn't
• 01/10: Released to Home Health Care so I could administer the remainder of my IV antibiotics
• 01/30 - 01/31: Excruciating pain hit sent me to the ER, which turned out to be a kidney stone and kidney and blood infection; they admitted me
• 02/01-02/02: I was admitted to Hospital At Home, which is a program where you are still a hospital patient but the nurses come to your house and the doctor videos with you (it seemed like a good idea but with a catheter and IV, it was very challenging)
• 02/08: Met with urologist to remove the catheter and talk about a plan
  
• 02/14: Lithotripsy to remove the kidney stone; urologist only got one stone because she said, "My kidney was gunky and the stent was crusty." Instead of admitting me to the hospital, she sent me home and went on vacation telling me to go to the ER if anything gets worse
• 02/20 to 02/26: It got worse....back to the ER and admitted with a severe kidney infection, UTI, and blood infection
• 02/26 to 03/02: Released to Hospital At Home, again
• 03/02: Went back to the urologist who still did not have the culture results from the Lithotripsy; she said she wanted to wait eight weeks before she did anything else to give my body time to recover
• 03/03 to 03/05: Released to Home Health Care so I could administer the remainder of my IV antibiotics
• 04/01 to 04/21: At midnight, I was in terrible pain but I wanted until 6 AM to reach out to mom (big mistake) to go to the ER; after a series of events I ended up on a ventilator for two weeks followed up by a week in the hospital (there is a lot to this story, which I will add later) and then rehab for a week because I was so weak; while on the ventilator the urologist released me from her care because she said, "I was too complicated"
  
• 05/04 to 05/12: Back to the ER with another UTI and blood infection; evidence of a possible internal bleed, which GI will follow-up with by doing an endoscopy and colonoscopy at the end of August (yes, end of August - no urgency)
  
• 06/03 to 06/09: Back to the ER, admitted to ICU (there is a lot to that story too) with a UTI and kidney infection

To recap: 5 ER visits, 6 hospitalizations for sepsis/septic shock, 2 weeks on the ventilator, 1 week of rehab, countless tests....I could never imagine when I started feeling ill around Christmas that I would be close to the end of life because of a kidney stone, kidney infection, and/or UTI. My cancer is literally the least of my issues - it remains stable. 

During this time, I also lost my grandpa. He was an amazing man. Separate post to come.

The cats were not sure what to think with me coming and going. They did not love me being gone for an entire month. They definitely are definitely happy that I am mostly home again.

Fortunately, my oncologist and his amazing nurse worked with Mom and I to get a consultation at Mayo and I am now in the hands of several specialists (nephrology, urogynecology, urology, infectious disease, cardiology, endocrinology, oncology plus GI and primary care locally and my wonderful psychologist), to figure out why I cannot shake the infections (they are different types of bacteria each time) and go into sepsis so quickly. 

As I celebrate my 48th birthday, I am so grateful to be alive. I am thankful for 

• My mom who is always with me. She advocates along side of me and for me when I cannot. 
• My family who shows up to support me through all of this. 
• My friends who are always there sending me positive thoughts, visited me in the hospital, rehab, and at home, as well as sent flowers, cards, and treats for me to enjoy.

This has been my hardest year of my life but I am confident that we will find a solution. To celebrate my birthday, my mom and I went to see Barbie. It was nice to do something that was not medical. We laughed a lot, which we have done a lot of that this week. It feels like we might be turning a corner this year...

For tonight . . . I'm just sayin' XOXO

2023....What a Year!

As previously noted, I wasn't feeling great at the end of 2022. Mostly I felt lethargic. I just felt ick and under the weather. I could not put my finger on what was wrong but I knew something was off. The pain in my arm was something I had not felt before. By Tuesday (1/02), I did not feel well enough to work so I knew after not improving for five days, I should reach out to my oncologist to see if he thought my port was having an issue and thus the new adventure began...

January 4, 2023: Mom and I got up early and drove to Mayo so I could be seen in the Acute Care Clinic. We had never been to this part of Mayo before. It turns out, this was set up a year ago for oncology patients who were having issues. When I got there, they hooked me up for fluids and took six vials of blood from the port as well as blood from each wrist. Yes, I said wrist. It is very challenging finding good veins to retrieve blood from me and lately the wrist seems to be the best place. They had to take blood from three locations to run blood cultures. Additionally, they gave me a nose swab and did a urinalysis. They ran an IV antibiotic. I had a reaction to the antibiotic but it went away quickly and felt we were headed in the right direction. As results started coming in, it was discovered I had an UTI, which is interesting because I had no symptoms but craved cranberry juice the week before. The nasal swab tested for 19 diseases, I had none: no COVID, no flu, no RSV, no pneumonia, etc. The last test to run was a CT scan to look for inflammation and disease. I had a CT scheduled for the following Thursday so we decided to move this up because the PA did not feel that it could wait. It was about 2 PM at this point. We were waiting on the insurance company to approve moving the scan. This didn't make a lot of sense to me because they had already approved the scan and we were just moving the date but we waited. And waited. And waited. By 5 PM, we decided to pick up my antibiotic from the Mayo Pharmacy (in a different building) and go home. We were hopeful it was just the UTI making me feel so lethargic. We went to the other building, got my prescription, and went back to the car. As we were starting the car, the PA called to say the insurance company finally approved my scan and they could get me in at 7 PM. We decided to stay and get the scan. We finished at about 8 PM and then had to decide - go home or stay the night. Ultimately, we decided to go home so we could sleep in the next morning and rest. We got home around 11:15 PM.

January 5, 2023: First thing in the morning, I got a call that said that I had a blood infection. It grew pretty quickly. Mom and I got back in the car and headed to Mayo. In retrospect, the signs were telling us clearly to stay but we were not paying attention. We arrived at the clinic so they could admit me. They ran an antibiotic and fluids while we waited for my room to get ready. Transport came and got me, which meant I got to ride in the tiny on-campus ambulance. They took me in through the ER, which was busting at the seams - 44 patients for 24 beds. We went up to the floor and they decided to change my room number. After about 15 minutes waiting in the hallway, they decided to put me in the original room they assigned me. Once I got checked in, they put in an IV in my arm because they said we could not use the port due to the infection. They started another round of antibiotics again. 

January 6, 2023: They scheduled a cardio ultrasound to see if the infection impacted my heart. An infectious disease doctor was called in to meet with me. After meeting with me and reviewing all of my tests, they were able to determine the type of bacteria that caused my blood infection. Apparently, it is a very common bacteria we all have on us but unfortunately, it got inside of my blood. The port was scheduled to be removed so it did not become a source of additional infection. I was very sad to lose the port. This means no more hydration therapy. It means my three month checkups will include the hunt for a good vein for blood draws and contrast for CT scans. We waited all day for the port removal. At about 5 PM, two people came to take me down for the procedure. They were funny and we talked how the best part of the hospital is the warm blankets. One of the guys told me they had good robes too. I had no idea. While I was gone, he brought me a robe to my room. The team of guys in the procedures were very funny. We talked about movies and TV. The doctor was very good. The worst part was the lidocaine shot. Once I was numb, the doctor proceeded with removing the port. He said the port was clean as was the pocket the port sat in. I figured the port was not infected because it did not hurt nor was showing signs of infection. I was happy to see it was not the source of the infection. It still had to come out because when there is a blood infection they remove foreign objects in the body to avoid places for the bacteria to hang out and make things worse.

January 7, 2023: The entire infectious team came to meet with us....they filled the room, it made me feel like I was patient zero. They think the bacteria entered through my port but were not sure how long it had actually been in there. We asked about the risk to mom and the doctors said none. However, once they left, my room was tagged isolation and anyone who came into my room had to gown up and dietary wasn't allowed to bring in my tray. I was put on ten days of IV antibiotics plus three days of a different antibiotic for the UTI. The plan was to leave the hospital with a midline so I could continue IV antibiotics at home, which made me happy because being in the hospital was not restful. I was on a bed alarm, which meant anytime I had to go to the bathroom, I had to call someone. They waited outside the door for me. They woke me up throughout the night for vitals. Finally, Saturday night my nurse asked the doctor if they could stop waking me up. 

January 8, 2023: Mom and I hung out all day. They scheduled my midline to be put in during the afternoon but they never came to get me. The nurse said she didn't know why they didn't come nor why they canceled the procedure. This was standing between me and going home so we were ready to have it put in. They did turn my bed alarm off for the day, which was a win.

January 9, 2023: The doctors changed so I started with a new doctor this morning. He told me that they would put the midline and then I could go home. We were due to go to Mayo this week for my three month checkup, a meeting with palliative care, and an echo that my pulmonologist order. I emailed my pulmonologist to see if the echo in the hospital could be used. He said yes but he wanted me to see cardiology because there was one finding he wanted a consultation on. Overall, my heart is in good shape so hopefully this is just nothing. My oncologist agreed to switch my appointment to telemed. I called palliative care to reschedule my appointment and she told me to have the doctor have the person come see me in the hospital. That turned out to be all sorts of bad advice because it opened up a whole can of worms of misunderstanding. I will just reschedule that appointment for a later day. We waited all day. At about 5 PM the VAT (Vascular Access Team) team came. I told them I had given up on them. They said the doctor put in I was going home on Tuesday so they did not prioritize my PICC line in. I told them I thought I was getting a midline. They had talked about both. A PICC line is more invasive. Both would be usable for the IV antibiotics. Ultimately, they talked to the doctor and went with the original plan of a midline. The women on the VAT team were great. My line was put in. Mom and I talked it over and decided it would be best for me to stay one more night so I could get my 10 PM and 6 AM meds. I told the nurse to let the doctor know I needed to be discharged by 9:30 AM so I could meet home health care to get my 2 PM antibiotics. The doctor came in to see me and he agreed that I could go home that early. He was concerned about my high heart rate. I explained that is just me and I would be seeing cardiology in March. They allowed me to have the bed alarm turned off for the night so that was a win!

January 10, 2023: The doctor did come to see me early in the morning. Mom and I were able to get on the road by 10 AM. We made it home by 1:30 PM. My meds and home health care showed up around 2:45 PM, which got me just in the one-hour window to get my 2 PM antibiotics. My nurse showed me how to do the meds. She explained that she will come on Tuesday to do blood work so we could determine if I can come off antibiotics. I will meet with the infectious disease control doctor on Wednesday via telemedicine. Hopefully, I will get the sign off to end antibiotics on January 20 and have the midline removed the following day.

The cats are so happy to have me home and I am happy too. I have spent this past week sleeping and working and then sleeping some more. It is amazing how tired I still am. The last doctor I saw told me studies show for every day in the hospital, it takes one week to recover. I am trying to be patient but I am tired of losing time to being sick. I have so many goals to accomplish and sleeping does not achieve them. That being said, I am giving in to self-care, realizing it is the only way to get better!

One a good note, the scans show my cancer is still stable! The nodule in my lung from the last scan seems to be resolved. There is a new very small lesion on my liver that we are watching but the doctors are not concerned with it right now. We will see what the next appointment shows. 

For tonight . . . I'm just sayin' XOXO

Happy New Year!

I am looking forward to 2023 for many reasons. With the exception of the last few days, I am feeling better than I have felt in a long time. I am settling into my new house and it is coming together. It has been nice living close to my mom. I do not believe in resolutions but I do make goals for myself every year. For this year, I have two personal goals:

1. Take more time off of work
2. Go through all of my boxes

These are big goals but I am going to work hard to be successful with them.

I hope 2023 is the year of "we" around the world. I am hopeful 

• we spend time with people with lift us up
• we invest in self-care
  
• we have the power to take back our planet to make it a world we all want to live in
• we protect the safety of community
• we put people ahead of profits

Take the time to give your time, treasure, or talents to making it a good place. we collectively fight for human rights around the world

For tonight . . . I'm just sayin' XOXO

Happy Festivus!

Festivus could not have come at a better time! I have been collecting my thoughts for this post for a while so here it goes... 

My overall grievance for 2022 is the lack of accountability existing in the world. 

I think this is a good representation of my Festivus pole for 2022.

1. Delivery Services: It should not matter why someone uses a delivery service, they should be reliable. When you order something, it is reasonable to expect it will arrive by the date/time it says it will arrive. When it arrives, it should be what you ordered. Especially because in most cases, I have paid the subscription cost and then I also pay a markup on each item. Companies do not realize some people use delivery services because they have limited options. As a person who does not drive because of the side effects of my illness, I rely on delivery services to bring me everything from the essentials to the indulgences. I pay to have a number of delivery services because just like streaming services, there is not a single company who meets all my needs. I keep hoping I will find a company who gets customer satisfaction but not yet. 

• Walmart - I typically do not shop this store but more and more I had been hearing positive things so I decided to give them a try. Mistake number 1. They seem to think delaying an order without a communication is acceptable. My order was supposed to be delivered between 9 and 10 PM.  Then I got a text it was delayed and should be here within two hours. At midnight, I got a hold of a customer care rep who said he called the store and it would be here within thirty minutes. I finally gave up on waiting. It was delivered at 7 AM. There was one item missing, yet I was charged for it and a poor substitution. I had to hunt down a customer service number. The number the midnight guy gave me when to media relations and they never answered. Customer care refunded me the money for the item I did not get and half of the poor substitution. He acted like he was doing me a favor. He said refunding the item I did not order was all he could do. Serious lack of communication and customer service. This is the Walmart I am most familiar with - shame on you!
• Uber Eats, Door Dash, and Grub Hub - Even though all three of these services have told me to report issues through the app, Uber Eats recently said, "It looks like you’ve recently made several refund requests—many more than most other customers typically make." Door Dash has said something similar as well. Maybe I make more requests than a typical customer because I use the service more than most customers. If restaurants would take the extra minute to double check the order, I would not have to report issues of paying for food I didn't receive either in whole or part. Trust me, I would rather have the food I ordered. When my order doesn't arrive or is missing a part of it, I am left with having to make the decision to risk a second order for the evening or figure out an alternative option.
• InstaCart and Target/Shipt - It is frustrating to know items exist in the store but I cannot put them in my cart to order them. It is frustrating to have delayed delivery times because they do not hire delivery people directly. At Thanksgiving, I had to wait two days for food. With Shipt, they failed to have their two systems communicate and told me it was my fault the shopper could not contact me.
  

Call to Action: Hold the restaurants responsible for putting together correct orders. Start employing people so there is accountability for the schedules and quality of delivery. Stop punishing the customer who does not get what they ordered. Charge either a subscription rate or up charge each item but stop doing both. For those of us who need to use these services because we have limited options, it is very costly. 

2. Drive Thrus: Mom and I will go through drive thru windows on nights we do not cook or use delivery services. It seems simple enough, you order your items, they put them in a bag, and you get food. Nope! For an industry increasing their hourly wage to more than I made as a teacher, it baffles me how they struggle to put the correct items in the bag. Take a minute and double check, no one will mind. My other grievance is when a restaurant, most particularly McDonald's, runs two drive thru lines with a single employee. Stop it because you are just overwhelming your employee and frustrating your customers. If you do not staff both lines, do not have them!

Call to Action: Take a minute to check the order. Smile and stop making the customers feel like we are bothering them. 

3. Social Media: I am appalled with the irresponsibility of the social media companies to promote hate and harm by not enforcing a simple set of ground rules for their online communities. People are dying because of online bullying and attacks on their self-image. People are dying because of the amount of hate promoted. People are dying because of misinformation. People are dying because access to weapons of mass destruction and human trafficking is just a click away. People are dying because they are being catfished and/or blackmailed. 

Call to Action: Do a better job monitoring user activity for harmful actions and implementing rules of conduct. Social media is a privilege not a right, it should be taken away when it is causing harm to others. 

3. Fast Paced, Instant Culture: This relates to the problems above. It seems our society has stopped seeking high quality or accurate services being provided or information being shared. It seems the goal is to just get things done fast regardless of the outcome. It used to be a big deal to have to retract false statements but not anymore. The new trend is thirty seconds or less. Is our attention span really that short? This will be the downfall of our society. This includes the medical world. The insurance companies pressure doctors to get patients in and out. When this happens, doctors cannot get to know their patients and things are missed. We are seeing a trend of many younger people dying from terrible diseases, which if caught earlier may have been able to be reduced. 

Call to Action: Slow down! Taking an extra minute or two to ensure quality will ultimately take less time than rushing and having to redo it. My wish is for us to return to values and ideals that once guided our society to strive for excellence.

4. Lack of the Sense of Community: For a world connected 24-7 without boundaries, I think we are the most unconnected we ever have been. This is apparent when we are willing to allow children to be murdered at school, shoppers to be murdered picking up dinner, commuters to be murdered headed home from work. Watching the news, it is clear people have lost their sense of community. When people feel like they are part of a community, they are less likely to commit crimes against each other, steal from each other, and ignore people in need.

Call to Action: Reach out and become part of one or more communities. Get to know the real people. Understand the issues impacting those around. Give your time, treasures, or talents to help others. If everyone gives a little, we all benefit. When we are part of a community, we hold each other accountable to do better. 

5. Giving False Information: When a company tells you something, you should be able to believe it. I am tired of companies who say or claim something but then it isn't what it they say. AT&T gave me two pieces of information, which turned out to be incorrect. Instead of making it right, they just said there was nothing they could do but they agreed I should have been given correct information. 

Call to Action: Honor your word.

Hopefully, next year my list of grievances will be less. I truly feel pausing for a minute and caring about others would resolve 99% of the world's problems.

Happy Festivus!

For tonight . . . I'm just sayin' XOXO

Christmas Meets the Cats

Over the weekend, I helped mom start to decorate the tree. We got through three of nine boxes of ornaments. We have some work left to do.

Last night, she brought a little tree to my house that her best friend gave her in 2020 when things were rough for me and my uncle so my whole family was spread out. She put the tree together and then we decorated it. We ordered some new lights because where we wanted to put it didn't have a plug. Once it was, the cats began exploring. 

All three cats are in this picture...zoom in to find them.

For tonight . . . I'm just sayin' XOXO

Remembering Bob McGrath

This past weekend the Earth lost a treasure when Bob McGrath passed away. He was in the original cast of Sesame Street and was on the show for 47 years. Sesame Street stills brings a smile to my face. I grew up on this show. I always remember how kind and caring he was on the show.

In 2011, I had the honor of meeting him. He was speaking at a conference I was attending. I had a long conversation with him about the importance of music education. It was so exciting to meet him. I have treasured that conversation. 

I know that he has been reunited with Mr. Hooper, Caroll Spinney (Big Bird/Oscar), Jerry Nelson (Count), Matt Robinson (original Gordon) , and of course, Jim Henson. I am sure there is a lot of singing this week as they catch up.

For tonight . . . I'm just sayin' XOXO