Well, I must say that I have never had so many doctors/nurses/ARNPs, etc in my entire life. In the past six (6) years, I have been seen by more doctors than I would love to even know. I really do not know quite how to address my utter feelings about all of this. While they know that we see a lot of medical persons, there is a wonder how they address that internally. What are their personal feelings about having to be seen by many other doctors who are less qualified than they, or even perhaps they are less qualified by these others?
First of all, let me tell you just who these persons have been. Primary, oncology, naturopathy, urology, OB/GYN, cardiology, urogynecology, orthopedics, physical therapy, endocrinology, neurology, dermatology, oncology social worker, ENT, audiology, and a host of RNs. For the most part, I have not seen them all at the same time. Some of these men and women I have been referred to because of just diagnostics. For the most part, many of these are stretched out far and wide. Some of them I do not see anymore and have refused to see them. I have been examined by more male doctors, internally, than I have had sexual relations with. This is just more frustrating than what I can honestly say. I hate the prospect of having to undress from the waste down and have multiple hands and instruments inserted inside of me. I had had one procedure that was just humiliating and horrible--urodynamics. While some may say that it is a wonderful way of determining how the bladder performs, I say that it is a vile procedure. Because of chemo, I am not thrilled to say that I have an overactive bladder. I have had many bladder infections and have had bladder spasms that have been so severe that I could be in utter pain and tears. Because of this, I had been referred to a doctor who specialized in urinary/gynecology--urogynecology. I had never seen this doctor before and then having a strange man examine me for the first time was not all that wonderful. I have not had sexual relations with a man in a very long time and having all these men examine me has been hard to deal with. I have not expressed this much because it is part of everything. Certainly, if I make a comment about it? I would be referred to another doc. Like I want that. No. I don't. These doctors cannot accept that fact that these exams are very difficult. I say nothing and I do not express my discomfort or malcontent. It would not matter if I did.
For the longest time, I had been trying to figure out how to maneuver myself with these doctors. If I do not want to be diagnosed with something different, I am careful to not add a whole lot of things. Oh, the frustration. I could write a novel on all of this. One thing that has aggravated me is when I am having a difficult day and at that point, I am working on low blood sugars and some anxiety that is associated with it. I must say, I do get very angry about it. I get very upset at all of the diagnostic codes that I see on my after visit summaries. It looks like I am a bloomin' basket case. When I look at all that I am dealing with, it really is quite a bit. On my primary's summary, I have about a page of things that are ongoing. So, I do my best to be very clear and concise in all of my discussions with my primary. He, however, is my biggest culprit. He likes to refer me out to anyone for any sort of procedure. I remember telling him about my chemo dreams and he danced around and said, "Oh my god, you need a psychiatrist!" Well, I told him that if he sent me to one, I would not go. One important reason was that they were "chemo" dreams and not ordinary dreams. That did not make me feel very welcomed or happy when he had done that. Since then, I have been working to diligently "train" him just as much as the other docs. Yes, they need training.
Over the past two years, I have been staying on top of my medical records and all. And let me tell you just how much fun this has not been. It has been exhausting and incredibly time consuming. Oh, to talk about that one! The medical records and their endless portals. There are more doctors than what I care to have and the portals. Keeping my files and my records in order has been a great drain on me. I sure wish that I had someone to help me with all of that. It is a full-time job just to keep an eye on my medical stuff.
And then the medical staff. Oh, let me tell you! A lot of these young ladies are very YOUNG! I really do not like to have these young women take the phone lines and just bee-bop their ways into my medical records. And then, too, reminding myself that when I call them, I must be very polite and express myself clearly and convey gratitude. All I want to do is to teach them some lessons on things. But, certainly, I cannot. I remember one time I was being seen by my urologist and had left a sample. When he had asked if I had left a sample, he was very upset that they had not run it for him. Well, I had to express that these young ladies needed to be taught as well. I certainly hope that they do.
On a great note, though. I have been told that I am very "compliant" (of course) and am in good tune with my body. I was told by my urologist that he wished many of his patients were like that.
I know that many things have been getting to me. How to address them has been one that takes great finesse. One thing, for certain, is that I am looking to get more education and experience. I look forward to doing it volunteer as well as paid. There are times that I just look at everything and feel so very inadequate. I am the only person taking care of me and at this point, I need to be very organized and very prepared for all of this.
Well, it is off to bed and la-la land. I look forward to more conversation. I will be adding more and more along the way and through the upcoming days. I am sorry that I have not had a chance to add anymore conversation over the last couple of years.
Wish me luck in my endeavors to keeping in step with the doctor's appointments.
Looking on. Looking forward. Needing translation.
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