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!