In a word

Sometimes, events in a day can be quite annoying. I recognize when I am annoyed and I am just that. Annoyed. It seems that this is discussed once again but it is discussed. COVID had created a situation and scenario that is more than what anyone had expected. The social distancing is met with medical distancing. I do not mind the distancing of the appointments as much as I do not like the distancing of communication. We must all communicate. So, what to do?

First of all, there was little communication from providers regarding what to expect. All of my appointments were canceled with the explanation that when things started to open up, there would be the opportunity to have appointments. Of course, this has been strange beyond all compare. During this time, communicating to the providers has been minimal. Talking to my oncology team has been nothing shy of impossible and quite distasteful, it has been quite upsetting. My oncology team is sparse to discuss anything. Labs completed, there is no discussion about what is going on. I really like communication and there is none. I am left to figuring things out for myself and while I have been doing that, there is no reason why a provider should not feel it necessary to communication to their patient. It is a good thing that I am studying my labs and staying informed. What is very sad is that I should have to.

So, appointment setting has been the fun thing. We have a certain protocol for appointment setting. This is a challenge. For a while, there was nothing heard from the providers and so getting in touch with them meant that it was a consistent waiting game. SO, the game is on. We wait. And wait. When the appointment is here, we have several choices. As the phases of the opening have been set, virtual appointments were available. In a word ... aggravating and quite saddening and disheartening. While many may have been able to communicate with their providers via telemedicine, I opted out. I opted out for two reasons: my phone freezes up and I have no privacy. Too, at the time of the lockdown, I did not have good cellular or WiFi reception that I could do a virtual visit. The options for me was limited. This made little difference. So, I have waited.

I have had several appointments since the re-opening. They are very interesting. In a word? I really have not just a word. Not all of my providers have appointments set. I have to be sure to get them updated and set. My PCP and I will meet in January, I have told these "people" that their fear over all of what is going on needs to be taken care of first. I simply have no confidence that they are able to care for me. With this level of fear, apparently, they can wait to care for me. ARGS! A lot of this is on my mind.

I have expressed that I will medically distance because of the issues. What is very frustrating and what remains, is that the lack of communication is quite upsetting. I love communication. One of my providers has canceled appointments a few times--my orthopaedist. At the point of the shutdown, my appointments were canceled. There was no communication about my test results and so when everything opened up again, an appointment was set. Then! of course, the appointment was canceled again because the provider needed to have that day off. So, I have let my referring provider know that if this happens again, I will not return to the provider. I will let it go. AND! my referring provider did not respond to that. Yes, he does know how I feel and has not made any effort to try and soothe the situation about what I feel or what is going on.

In a word ... I want some change. And so, I am working toward it. Change. I do not like how things have been and I would like a different direction. I have no idea how things are going to be with the upcoming appointments with my providers. I have one coming next week and will see how things go. I have my colonoscopy coming up and we shall see how things go with that. I am hoping change will come but I am afraid that things will not. SO, I must be prepared to accept things as dysfunctional as they are. I must be willing and I am not willing. I need to seek a different way.

In a word ... daunting!

Today is PT tomorrow is ...

Today is another appointment with PT. I have been seeing a podiatrist for my plantar faciitis. Yea, what fun. The first time that I had had any issues with that was right after chemo. Wow! My feet hurt quite a bit. Over the past year, I have had quite a bit of foot pain and going to the fitness center was really not helping at all. Being on my feet and the treadmill was not all that helpful. So, I had gone to my physiologist (this a doctor, that a doctor, here a doctor doctor) and he had recommended a brace. Oh, I tried that and it was just ridiculous. So, I asked for a referral and there ya go! Podiatry. What a thing. I have orthotics now and am at PT. Because of COVID, I have not been able to get to the fitness center as I would like and work out. Yea, working out at home is not ideal and it just does not happen. So, off to PT. I think the doctor just does not have a great inside view on things. As a cancer patient, I have seen some very interesting doctors--some that need to have their heads examined and others that should have never been allowed to be a doctor. I have had others that work poorly with patients and are best as researchers and teachers. We just get the best of somethings not ok.

So, off to PT today. I have several more weeks of PT and then ready for a new set of docs, I am sure. The clinics are opening up more but our Gov has been hesitant to open up the state all the way because there are "too many cases" of COVID. Amazing! He does not realize that things are going to be this way and it is called infection rate. Things will never be the same, I am afraid. My PCP's office is another that really has been frustrating to me as well.  All my appointments with providers were canceled at the beginning of the year and so getting back to the mainstream of appointments will take some time. This will be nice when things get back to something we recognize. 

I have been working a lot at the new job and a wee bit tired. 

Moving forward. Checking my list. Seeing who is naughty and nice.

So what am I doing now ...

So, what am I doing now? Well, for one, I am not giving up. I have had many additional experiences that have caused me to take a stance--a position of qualified care and promotion of health. One experience that has really changed me was when my Oncologist shared with me that he too was a "survivor". This was completely unexpected and not invited. I had had labs completed a couple of years ago and my regularly scheduled CT. At the most recent appointment, I had been told that a phone appointment from the doctor was important. So, labs and CT were completed, the phone appointment canceled from the doctor and then the events began. I had been emailing the nurse and then one day, she called and said, "please hold for the doctor". Well, I had not expected that and of course, out of respect, you do not hand up on the doctor. One thing that really upset me about that was how does anyone know what I might be doing at that moment? "Please hold for the doctor". That is something I really did not want to hear or expect to hear. So, in the conversation, the doctor used a set of logic that was not founded. He started to comment that the reason why he would like to discuss the labs is because ... then his voice lowered and he stated that "he too was a survivor". Well! I did not expect to hear that. It makes no difference in the professional relationship that the doctor to share his or her own cancer diagnosis. What cancer? I do not know. But, according to the American Cancer Society, the most common cancers with men are colon, lung and prostate. SO, these are the three top picks. Just the same, it is not appropriate to try and create a therapeutic alliance through the premise that one cancer patient can understand another cancer patient. He is the specialist and of course, he knows what the patient is going through. HE IS THE DOCTOR! Yes, I called the clinic and spoke to the clinic manager and asked about how to approach this. So, of course, what did he say? I had to talk to the doctor myself. Oh, great! So, I had to practice how to address this with the provider. Oh, I did not want to have this conversation and this was not something that I was looking forward to. SO, the day came with the provider and I had to address it carefully. And I mean CAREFULLY! I practiced I statements and no "you" statements. The decision to do this was not overnight. From the time that the Doctor decided to tell me this, he had made other comments about how he had experienced treatment. One appointment, I tried talking to him about my leg cramps. He piped up and started to say how he still go those too. I continued to discuss me but changed the subject very quickly. Another time, he was talking about how he had referred to an event that put him to the emergency room, vomiting. I thought that was humorous at the time, but did not realize it was related to he chemotherapy. So, I addressed it. When I had addressed it, I used I statements. "I trust you are taking care of yourself." "I trust that all is well." "I am not privy to your healthcare". "I would appreciate that we not discuss your health". This was met with him throwing his hands up in the air and said, "ok, ok!" So, how is a patient supposed to have confidence in her care provider? Not this patient. Not at all. So, I had decided to not communicate with the office as much. I emailed less and less and then asked for my labs to be done elsewhere. I had gotten the lab request in print, took it to another clinic and stayed informed that way. The Doctor has not responded back to the labs as he did when they were done in his clinic. On my last CT, I had the test done out of clinic. I know that he can see that I am not pleased with the clinic and I really have put up my protest. So, this last appointment, he had offered a six month follow-up. I asked for eight months and he agreed. So, I will see him only once a year instead of multiple times a year. I do not send any email requests unless if it is important. With COVID now, many things have changed and so seeing our providers is done through portals, webcams or over the phone. As far as I am concerned, I would love to never see this man again, but it just is not happening.

I have continued to study to take care of myself. I have continued to post in my Breast Cancer Warriors group and continue to press onward for others as well as myself. Now? I want more. When I was told that I had slipped through the cracks, I said that I wanted to do more to prevent this from happening. I have studied long and hard and continue to press forward with all things. Today? I am studying to take the RNs exam. I want to do more and to make a change in Administration and how providers conduct themselves. Pushing forward with my RN may help me with that.

I want change. Change for my patients and change for myself. I am not excited about the events that have happened in the past years and I want this to be a motivator above all things!

Please continue to be with me while I work on this next saga of how I am caring for myself and others.

Seeking. Pressing. Studying.

Why we continue

I am sorry that I have not been getting to my blogs. There has been quite a bit that has happened over the last three years that I have not been able to get to my blogs.

My last entry left off where my provider had received the assessment regarding my diagnosis of PTSD. From that point, my provider had discharged me from the clinic and I was left to look for a new provider. I was told that doctors do not like being corrected. Well, it is safe to say that patients do not like being maldiagnosed/dysdiagnosed/misdiagnosed. When the provider does not do their due diligence on matters, it can create great harm. I remember the email that I had received regarding this assessment and I was very sure to let the provider know that I was not happy that I was seeing so many specialists. When the provider was wondering why I refused the first refusal to go to a Psychiatrist, I reminded him that it was not my intent to be seen by yet another specialist. When I had shared about my chemo nightmares, he turned, with hands lifted in the air, expressed loudly, "Oh my god, what you need is a psychiatrist!" So, what part of that is welcoming and accepting of a referral? what part of that makes a patient feel they are valued and listened to?

So, I had called my insurance company and told them what had happened. I had gotten another provider with a different healthcare system. This provider was very good. We had discussed the PTSD diagnosis where he commented that there was nothing wrong with being diagnosed with PTSD. I agreed. There is nothing wrong with the diagnosis and it is an ample way to explain behavior. However, this diagnosis also says to other providers the psychiatric need, which may not be amply understood or properly cared for. There is a bias and that bias will be experienced by providers who do not understand or know how to treat. I did express that the diagnosis was in error and that I was not going to be improperly diagnosed for more incomplete care or direction. I have experienced so many disastrous things.

Currently, there are a lot of bad medical appointments that have accumulated to my attitude. I want things to change and I want to be part of the change.

Forgive me for not getting my blog completed these last three years. I am here to keep going.

Moving on. Pressing on. Being more.

The next step

Well, a couple days ago, I got the note from my assessment and it was copied and given to my doc. It has been copied and scanned into the system. So, now, what to expect from Dr. Primary? I checked the system and my Dx is still there. I will take some opportunity to think about how I will be addressing this with him. Honestly, I am battling within myself about leaving his practice and looking for another primary. What will I get if I go to another PCP? This is a great worry that I have. But, staying with this doctor worries me just the same.

So, what is this appointment going to look like when I see Dr. PCP? There will be some discussion, of course. Will he be on the defensive? Will he be agreeable? Will he ask questions? How will I prepare for this? Do I trust him anymore? Certainly, I am worried about this and I need to keep discussing this to see how this is going to work and progress.

We shall see how things go. I don't know what to expect and I need to really be in prayer about this.

Seeking. Believing. Praying.

Remembering what I remember

I have to say that this is the first time that I have decided to look him up online. I looked on Facebook and I found him. I remember my Pastor telling me that someone called the church to say that he had died. According to my Pastor, this anonymous caller sounded much like him. Mr. D.L.A is still alive and he has a Facebook page. No, I would not send a friend request. No, I will not make any attempt to contact him. Looking at his picture is enough because I want to know what he looks like now, nearly 23 years later and to know what he looks like today.

This makes things very interesting. I am not exactly sure how I feel but I do know that looking at him is not as menacing as I thought that it would be. I am very frustrated but not to the point of breaking down. I feel odd, but not sure exactly how to explain it. This person changed my life forever and I don't want this to be over my head.

I will see how I sleep.

Looking. Seeking. Thinking.

I dreamed a dream

Well, it has happened again. I dreamed a dream that is one of my stress-dreams. I do not usually have those types of dreams, but when I do, I know what they are and why I had it. Stress? Yes, I have a huge amount of stress on me right now and I am looking forward to getting this stress reduced as much as possible.

So, what is going on that I have a lot of stress? I am so glad that you asked me about that. I have had these types of dreams since I can remember. But, they are as far and few in between. The stress that I have been experiencing is on many fronts. First of all, I have so many medical appointments. And, of course, with these appointments, you must be very careful about how you conduct yourself. Always, that is a concern. We do not get to mistreat the medical people who are willing to accept us to care over us. Too, they are not just there for abusive treatment; they are there to guide us through. But, what happens when they lose that mission statement? I have a very interesting problem with Dr. Primary. From the very beginning, he has been very demonstrative with his behavior. He is not afraid to openly express how he feels and will laugh at inappropriate times. When I had told him about these stress dreams, he laughed. Oh, sure. That is welcoming. I know when I have had enough of things and when they seem to be very burdensome, I have these dreams. So, I shared it with him. That is not ok to laugh at the patient unless the patient is laughing as well. I was not and so, I do not want to be laughed at.

Secondly, I have been trying to fight this PTSD diagnosis in my file. So, I had referred myself to a Psych eval; I did not want to ever do this and so, I had to do the only right thing. So, I took the assessment and inventory, and of course, no PTSD. NO borderline personality disorder. I am fit as a bass fiddle. So, after a month of fighting to get the results of this, I have been told that this is on the way. I have been wanting to fight this Dx so that it can be removed from my file. Too, that when it is time to go to another provider, I will have that in my records as well. Even if Dr. Primary does not change it, the record will show an assessment/evaluation and the appropriate Dx. Waiting on this document has been bothering me very much. More than I would like to say.

Thirdly, I have been having longstanding problems with my ears. I have been in a lot of pain and the pain has been through the roof. The last time that this happened was when I was initially given the hearing aids (HAs). I wore them for about three weeks and then the pain was so intense, that I could not wear them any longer. So, I took them out and from there, did not wear them for nearly four months. I am at that point again. I cannot wear the HAs because the pain is that intense. I went to urgent care because of the pain and was given new Rx for the ear infections. Counting the left ear as well, I have had 6 ear infections. Why am I having so many? We do not know. Mr. Dr. ENT has told me that he believes that I have been misdiagnosed every time. So, that means what? When I see him next week, we will get down to business. Too, I have asked for an evaluation of the HAs from the tech who helped fit them for me. I have been wanting to know if the molds/domes have been a contaminant for recurring ear infections. I have been treated for bacterial and fungal infections. So, why wouldn't it be natural to assume that the molds/domes might have a problem? We shall see. No one seems to think that there is a problem. Dr. Primary told me that hearing loss is not painful. Well, I beg to differ. I have been told that HAs do not cause ear infections. Well, the device itself may not, but the molds/domes may very well be causing the trouble.

Too, I have several procedures coming up that I am not thrilled about. I have a colonscopy, another nuclear test for Dx of gastroparesis. How fun! I have my next CT coming this month and this has been on my mind immensely. My labs are fine and they have been. But, no matter how many of these I have, I will always have to worry about the outcomes if they are not good. What is really bothersome is that we patients are not supposed to have any qualms about the procedures. They are a procedure and if we display any difficulties, or that we are not willing to have the procedure done, then there "must be a problem". We simply cannot just experience overkill with the amount of exposure to all the doctors. So, as it stands, I see Dr. Primary, Urology, Oncology, Naturopathy, Mental Health, Gastroenterology, Endocrinology, Cardiology, Acupuncture, Massage Therapy, Orthopedist, ENT, and Audiology. Cardiology is on a as needed basis. I had a stress test done and passed with flying colors. That is 14 different providers with 14 different appointments with 14 different potential tests and the like. Sure, Massage Therapy and Acupuncture do not do tests. They are for my overall health and elective.

There are a lot of demands. But, the most part, this pain I am not trying to get used to.
And then work. How do I look for new work and stay on top of these things? I need to relax and I need to be able to calm down and breathe!

Resting. Relaxing. Dreaming.