Happy Roller Coaster Day

I call today Roller Coaster Day because it is a day of ups and downs for me. For decades, I celebrated May 5 because it was my last chemo day as a child and each year was a year of survival. Then in 2020, another high was include when I earned my doctorate degree, something that had been a huge goal of mine. Unfortunately, May 5, 2020 was also the day I was diagnosed with Mesothelioma. Two ups and one down.

As I sit here today in 2024, I have a lot to celebrate:

• I am 41 years out since my last Wilm's Tumor chemo treatment.
• I am a doctor for the past 4 years.
• I am still alive 4 years after my diagnosis.
  
• I am feeling the best I have felt in a long time.
  
• I am surrounded by an amazing mom, loving family, snugly fur babies, and fantastic friends.
• I am part of a great professional network.
• I am an active contributor to my community and my profession. 
• I am living every day.
• I am laughing every day, mostly at myself.
• I am looking forward to the future.
  

For a rare disease, whose survival rate is low, I am kicking its......

While I am battling a lot of different things, I have found a way to balance things in order to ensure I can do the things that are important to me and find ways to have fun. 

I truly believe attitude has gotten me to this point. I am a fighter who tries to see the positives and not dwell on the negatives. I believe this is the secret to survival.

To celebrate Roller Coaster Day, mom and I are going to see Steel Magnolias, which I think is fitting because it is a movie that causes a roller coaster of emotions. We have been going to the movies a lot lately, which is a good return to normal. It is the one activity I missed most during the height of the pandemic.

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

So Much To Catch Up On

It has been a long time since I blogged, which is never my intent. As my favorite musician once said, it is because I have been out living and enjoying life.

In good news, I am currently feeling the best I have felt in the past 18 months. That wasn't quite the story at the beginning of year and ended up with a quick trip to the hospital in February. I had been sick to my stomach for about 8-10 days and it wasn't going away. Mom suggested I check my blood sugars and they were over 600. We went to the ER where I thought they would give me insulin and send me home but they decided to keep me for a couple of days. My A1C was 12.4 and I had another infection; however, this time there was no sepsis - yay!!!! Two days in the hospital. The coolest part of this hospital stay was running into the parents of two children I had in child care almost 30 years ago. The kids are doing amazing things, clearly because of a solid preschool education.

The urogynecologist doctor told me he never said to come off antibiotics, which is a lie. The new infectious disease doctor does what urogynecologist suggests. Very frustrating. I left them both saying I would have to think about it. The urogynecologist told me I am not to use the portal to contact him nor can I talk to his nurses, I can only talk to him. That is a red flag to me of a doctor trying to cover his ... Needless to say, to date I have opted not to take the antibiotics and I am doing good (knock on wood). 

The endocrinologist wanted to me start insulin right away. I wanted to reduce my numbers through diet alone. Since, it took weeks to get the order straightened out and by that point I had made significant improvements in my blood sugars doing it my way. I was told I would not see improvements for months. The reality was within 1 month I reduced my A1C by almost 3 points. I anticipate I will see even more improvements when I go back in two months.

Mom and I have been going to the movies quite a bit. We recently saw Gone with the Wind, my namesake. I had never seen it. I think considering when the movie was made, it was amazing what they were able to do. Mom and I both laughed at the curtain scene, remembering the Carol Burnett spoof. 

We celebrated my brother's 40th birthday with a lunch for him as we was on his way to his vacation. It was good to get out. We have been trying to do that a bit more.

My pulmonary embolism, which they said would never go away, seems to have dissolved. Since then, my coughing is reduced. My shortness of breath is now back to just on exertion, which is still frustrating but it could be worse.

I have been trying to walk. The oxygen does not do anything for the shortness of breath but it seems to help with the blood oxygen level, a little bit. I do not know that it is worth it. I have a virtual visit with my pulmonologist coming up to see what he thinks.

Work keeps me busy, which is good. I feel thankful that I love what I do and who I do it. Mom is able to focus on retirement more this year, which is good. The house is slowing getting worked on. I have about 100 things I want to do all at once but trying to figure out the priority. The cats are a trip. Pancake has become obsessed with being near me. Flap cannot get enough and he is obsessed with one of the Lego men, he is always trying to get to him. Marmalade just chills but lately she even wants to be be in the recliner. Three cats and me - it is quite a sight.

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

Saying Goodbye to Lynn

Last Thursday night, my stepmom Lynn joined my dad. She had been battling several illnesses for a long time so this passing brings her peace and comfort. 

Lynn entered my life over thirty years ago when she met my dad. She had a small business and did interior design work. That is where she met my dad. She was painting a space and he was doing construction. They came from different worlds but found love in each other. They eventually got married. We embraced each other immediately.

I always remembered that Lynn was always put together. She loved clothes, shoes, and jewelry. She gave me a beautiful cat ring several years ago so that I would remember if something happened between my dad and her. She loved her engagement ring from my dad wanted me to have it so I had a piece of their love. There were lots of times I wondered why she loved him so much because he wasn't always the nicest but she saw past that. We used to talk a lot about my dad. 

Throughout their relationship, her and I shared lots of stories about family, the Island, her past, and her love of animals. She had a love of cats that was larger than life. She had an orange cat, like mine, named BC (birthday cat) for years. She loved BC. Eventually BC passed but was never forgotten. When they moved to Knotts Island, she fed all of the stray cats. And there were hundreds. She loved them all. No one loved cats more than Lynn. She was so compassionate for animals and would feed the cats over herself. Lynn loved her granddaughter. She brought so much light into her life. Family was important to Lynn. She was a private person but never around me. She was honest with me and we had lots of candid conversations. 

When my dad passed, she and I were able to console each other. It was very hard on her. She cared for him in his final months, which wasn't easy but she loved their time together. I was grateful he had her. She missed him every day so I know she is very happy to be with him now. Her heart was broken when he passed. We always connected on his birthday and on his passing day. 

I will miss Lynn but I have wonderful memories of our time and I am glad she is finally at peace.

These pictures were from one of the last times we were all together. It was right before my dad began his final months. My mom took the picture. All six of us had a wonderful afternoon together.

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

Happy New Year...Published a Little Late

It has taken me some time to post this blog. I have been extremely fatigued lately so there have been lots of naps.  I look forward to saying goodbye to 2023. It was a year of frustration. It was another year of facing the end of lift but fighting hard to come back. After 2020, each year I thought would get better but that has not been the case yet. I have high hopes for 2024. 

Mom and I spent the holidays just the two of us but embraced the days with yummy food and lots of laughs (two of my favorite things):

Thanksgiving

Christmas Eve

Christmas Morning

Christmas Dinner

 

New Years Eve

Medically, I am doing OK. The pulmonary embolism seems to have added the cough back into my life and made my shortness of breath worse as well as my blood oxygen levels. We tried an inhaler but that did not improve anything. We are going to try oxygen for when I am doing activities that exert me, like walking, doing dishes, unpacking, just about anything outside of the recliner. In terms of the infections, we are now in a wait and see mode as December 31, which was my last dose of antibiotics - will twelve months of antibiotics do the trick?

The thing I am most thankful for in 2023 is my mom. She fights for me every step of the day and without her, I would probably still be on a machine. I hate that she has to watch me be so sick. We are determined to have a 2024 filled with fun and positive activities. We did accomplish unpacking all of the kitchen boxes that were in the house. There are a handful of things that were not in those boxes so I suspect there is a box or two in the garage. We will see! The guest room unpacking has started so people have a place to stay that want to visit. 

I had a year of wonderful friendships....old and new. There were lots of laughs with family and friends, which I think keeps me moving forward. I am so blessed to be so supported. I watch the world around me with so many people who have no one, I feel so bad for them. I do not take any of my relationships for granted. Let's not forget, the lots of snuggles with my fur babies.

 

As I go into 2024, I have decided to try to reduce my screen time and take up hobbies like puzzles, diamond art, and Lego building. I did centerpieces for both Thanksgiving and Christmas.

My mantra for 2024:

2024 looking forward to what's in store!

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

Happy 2023 Festivus!

This is one of my favorite holidays....Festivus.

 There will definitely not be feats of strength for me but boy do I have grievances to air:

• Lack of compassion or interest in the medical community

This year stunk! Six hospitalizations, countless doctor appointments and tests, two weeks on a vent, more antibiotics and medicines than I have ever been in my life. At almost $1 million in bills, there are still no answers. To be honest, they stopped looking after just a few tests. No one seems to care about finding an answer. No one seems interested. The doctors are so focused on their only area of expertise and no one is willing to open their mind to new ideas. They barely get to know the patient or what is happening. My mom and I have had to work so hard to keep me alive this year that I am still waiting for our paychecks. It is amazing to me how many medical people complained to me this year about how rough it was for them and everything going on with them. Seriously?!? It is time for people in the medical profession to begin listening more, caring more, and paying better attention.

• Lack of customer service and the waning work ethic

Where do I begin? How hard is it to put the items you ordered into a bag? If it is food, include a few napkins and straws. It seems that across the board it is getting more difficult to find people who care about their job. As an identified workaholic, this is just something I do not understand. It is time to demand good service. We have to stop accepting this as "it is what it is." It doesn't have to be this way. 

• Lack of values in politics

It is said in the new Wonka movie, "The greedy beat the needy every time." I told my mom, we need to create a shirt that says, "Stop the greedy beating the needy and Vote!" Congress should be ashamed of going home this holiday season, they have accomplished very little. It is time to put their agendas first. Our founding fathers created a structure based on a balance of power and representation of the people. While it wasn't perfect, it was done with good intent. It is time to return to governing for all people, not just a few. We must demand more from our elected officials. It is not too late to get back to a country united and living up to our pledge.

Amongst all of my grievances, I have not lost faith in humanity. I am surrounded by so much love and support, which is never lost on me. This love got me through some very dark and stormy days this year.

One of my favorite pictures of Mom and me! This picture speaks to the strength of our relationship. Not every day is unicorns and rainbows but we are undoubtedly connected deeply. We are always there for each other. I wouldn't want to go through this journey without anyone else. We have endured all of these grievances together this year but never stopped being able to laugh and find joy throughout the way.

 

My mantra for 2024:

2024 looking forward to what's in store!

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

December Medical Update

The last few weeks have been a whirlwind with doctors. Overall, things are stable with me. 

The cancer is relatively stable. There is evidence of small growth but it is within the margins. I continue to ask and stay on top of them because while it is tiny, I know this is a slow growing cancer so we will most likely not see big growth but I do not want to be blindsided ignoring the small growth. 

The kidney stone is still there but it has not grown or moved. The doctor increased my medications and added a new one. 

The lungs are causing lots of coughing and shortness of breath. Palliative care added a new medicine, which is the first thing that has helped my coughing in three years. Pulmonary is trying to get oxygen approved by the insurance to see if that will help.  

The diabetes is starting to be elevated.  It has been slowly ticking up this year. I am working to get that number down. I am on two steroids, which I think are contributing to this. Additionally, antibiotics can also impact the numbers.

The infection is still under control with the two antibiotics. I come off antibiotics at the end of next week so we will see. I am concerned because my blood work has shown elevated white counts  the last few draws but no one seems to worry about it. My most recent blood work also showed a decreased red blood count. I am very fatigued but there are several factors that could be contributing to that so we are just watching everything closely.

I will not lie that mom and I are anxious to come off the antibiotics but we will just take it one day at a time. Meanwhile, the cats are taking good care of me. They do not leave a lot of room for me in the chair but I am bendy so it works:

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

Thanksgiving 2023

As the Thanksgiving weekend comes to a close, I wanted to take a few minutes to post to the blog. Mom and I answered our annual question of what are we most grateful for - this year we were more thankful than usual to be able to celebrate the holiday together. I am very thankful for my mom, family, and friends. 2023 has been rough but in true fashion, we keep fighting to see another day. 

This year I took on creating the centerpiece. I have been trying to do more things that are not in front of the screen so I built the Lego centerpiece. Next up is two Wonder Woman Lego sets and then the alligator. Mom cooked a delicious meal, which we both ate too much. She also made her apple pie, which is the best in the world! Her Christmas tree is up and ready to go. Next weekend, we may tackle mine after I put the Halloween decorations away. We have one last thing to unpack and then the kitchen/dining room will be done. After that, we will take the orange guest room. Slowly but surely we are getting the house organized. 

This week we head to Mayo for a day of appointments. Then two weeks off and we are back there for more. Never a dull moment around here but it beats the alternative.

  

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

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