GI ... Jane

There always seems to be something that really upsets the apple cart. But, keeping moving along. I wonder at times at how some people manage to get into healthcare and stay there. Monday, I had my follow-up appointment with my GI, Dr. KK. It was good to see him; he looked thinner than what I had seen him last. I had asked if he was well and the LPN had said that he had been very busy because of the COVID issue. So, it is colonoscopy time and we have to determine what will be done to prepare for it. So, this was a storm. While I have had diarrhea for years and have done my best to keep it from worsening, I have had two GIs and neither one had made any suggestion about what to do to prevent it. So, I had decided to take psyllium husk. You would imagine that someone might have given me some direction. When I asked the doc about this, he smiled and apparently had been quite happy at this. So, humbly, I had indicated that I would like to remain on the product for as long as I can because it has done a great job and reversing the diarrhea. Oh, by the way, when you are being asked about the symptoms of COVID, never admit because if you have had this condition for YEARS, that is NOT NOT NOT COVID. I had asked the LPN why neither doc could have told me about this years ago? No answer but a quiet nod. This spoke volumes. At times, I feel that they view me as human detritus. So, managing through is what I am doing.

So, the colonoscopy is on the way. I have time to prepare because I will need to isolate myself when I am preparing. The procedure for the colonoscopy now is: five days prior to the exam, I must have a COVID test and then await the results. IF it is positive, then the exam is rescheduled and then I must wait for the test to come back clean. Mind you, and did you know that this is now becoming the standard for many clinics and hospitals. Prior to tests, surgeries, and etc, a COVID must be conducted. With clinics opening up and more hospitals taking patients for procedures, this adds to the raw data for the tests. If you are tested positive, the test can be done multiple times which in turn adds to the raw data appearing that the virus is spiking when indeed it has not.

So, more things are coming out from this. I am not looking forward to the test, but it is just a matter of nothing. So, I am telling myself. I am going to have this done at the hospital because I am a difficult start. I had an exam last year which left a huge bruise on my forearm. I showed the nurse this and so it was proven that I need to have better prep, which of course, it done at the hospital. So, my colonoscopy will be done there. This does not bother me a bit. I just do not want a COVID test with a cotton swab that is about 18 inches long. Oh, I need prayers!

As always, I will keep you posted.

Speaking up

Yesterday, I had a conversation with the direction at the clinic. I have had some lingering questions about many things and I need to continue to press forward. So, yes, I did speak up and asked about matters. Since my Oncologist had told me about their survivorship, I have had a change of heart regarding how I look to the provider for direction. Too, when Naturopath used profanity with me, it changed matters altogether. What to do? Do I just continue to ask questions or what do I do? Yesterday morning I told the director that I was going to keep studying and continue to port out my care elsewhere. I no longer get labs done at the clinic as well as go elsewhere for my CT. Many things have happened at this clinic and I just want to be free to be seen, ask questions and to continue seeking answers to things that the doctors will not explain. When I was told that I had slipped through the cracks, I decided then to make a difference in my health and to study.

How do I conduct myself in the doctor-patient encounter? If I am quiet and removed, then they will diagnose and move along. I do not want to have any more diagnoses in my chart. The providers certainly do not ask questions about what is going on but are very quick to add things to the chart. I do not like that. Not one bit because it takes a lot to discuss things with them. I have experienced this twice before, with one that discharged me because I confronted them. It is upsetting to me and I have no idea how to move forward to avoid this from happening again.

How do I proceed? Why proceed? I really have lost my thoughts of generosity towards these men. How can they do this? Why are they doing this? I want direction and I did not get it from the clinic manager. While we discussed many issues, a conversation of about 30 minutes was not long enough. I hope that I was concise enough to say what I wanted. I had just finished a 13 hour shift and I was tired. I had emailed him in April of this year and he had not responded. He did apologize for not responding. Well, what is the purpose of sending an email only for it to be ignored? He did say, however, that he did look into it and sounded to be in favor of what the nurse had responded in my emails. Interesting, he had the emails in front of him.

This is bothering me for certain. I want some direction and I am hoping to get it. I have my appointment with the Naturopath in August and I would like to know how to move forward without risking another diagnosis in my chart.

We shall see.

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.