Is it me or is it me? Silly question but I will explain. I have a chronic illness. When it first hit, I became almost immobile. I can remember crying because I could not get out of my car, I could not step up into the house, and my hands were curling into claws. I finally got diagnosed with Psoriatic Arthritis. It is a funny little bugger of disease. First of all, people have no clue what it is, even medical personal. I have had to explain it often to the clinicians I work with. Worse was the time I had to explain it to a Doctor. People think it is just arthritis, much like osteoarthritis, which affects joints. This monster destroys the surrounding tissues like ligaments. But that is not the worst of it. The inflammation caused by it is unreal. This inflammation settles in joints like a sticky fog. Again, not necessarily the worse of the situation either. It is what is happening inside to my organs that is more worrisome for me. But the thing I want to write or should I say vent about is the health system we are in and where we are heading. But wait….. I work in the field. HA!
I guess that is what bothers me the most. One of the things I am supposed to be in charge of is Patient Satisfaction. I take my role very seriously. I do not think many places do. For example, after waiting forty-five minutes to be brought back to a visit room, I asked the nurse tech at my primary if they were following Patient Family Centered Care practices like all the affiliates are supposed to. She had no idea what I was talking about. When the Doctor came in after another half hour wait, I asked him. Can you guess what he said? “Patient what?”
But the worse culprits are the pharmacies, especially the big specialty pharmacies. I have to get my shot from Accredo which is possibly the worse company in the world. I won’t bore you with the details. But it took me three months to get my order straightened around with multiple threats last year. I have been getting the same medicine for eight years, but from Express Scripts. Why it was so badly screwed up was beyond me. This time, I am changing to a new medicine. I have a lot of trepidation about the potency of this drug, but I have no choice. This is all stressful.
And this is where I am headed in this short rant tonight. I am in too much pain to type much. First of all, no one ever told me where this disease was going to take me. Someone might respond with, well, they did not want to worry you or no one knew for sure. Well that is a lie because they do know. They know full well what the progression of my prognosis is. Everyone is so focused on my weight and have always tried to pin everything on it. They just never said that PsA will get into my intestines and cause a reaction similar to Crohn’s. Doctors: “Oh wait, have you not been telling us that you have been having chronic issues for a while? And we told you to take a probiotic. Did we forget to tell you that the reason your uric acid levels were so off the chart was due to the overabundance of cell production caused by PsA and that it changed your pH levels…and has probably eroded you gut… oh and wait, we forgot when you were diagnosed with three (now five) .06 kidney stones, all uric acid, that we said you will never pass because they are too big”….. and I have passed over 30 stones…. “That you will have significant increase of having monosodium urate crystals…also known as gout which cause severe joint pain”….. which is what is happening now “Oh and so we are giving you a drug to help with the uric acid production but it will increase your weight” which it has……see where this is going?
So now they are trying to put me on a new drug that is supposed to work better on my particular symptoms. Fortunately, my psoriasis is not bad. The plagues do not look like “normal” psoriasis and so it hindered being diagnosed with that by a top dermatologist. It was not until the PsA presented they figured that out. But what is going on inside is pretty bad. It just started getting really bad last spring after I passed a kidney stone that semi-blocked my urethra for almost a week and put my acid level at 12. (normal is 4 -6) And when your fluids in your body are like battery acid, well it is not too good. I have returned calls three times to Accredo to get my new drug shipped, and every time it is screwed up. Thankfully, I do not need it to live, but I sure hate the stress.
As so this is my wrap around for this rant, this pathetic bitch, this sad tale of “poor me.” I hate the medical field. I work in it and that is extremely stressful. I have to deal with it which is even more stressful. As we age, medical attention is a probable experience we will all have. I did not get sick at all until I went through the very stressful situation(s) of my divorce and presented with PsA. I was in my early 50’s. It got better for many years, and now is back with full vengeance. Now, the doctor did tell me that it would come back. He said I was very lucky to be in remission for so long. Hopefully this new drug can kick me back into remission. But one of the things that makes disease present is stress….dis…ease…there is a reason it is called that. But dealing with the medical field is bad now, but trust me, it is going to get worse when we get ACOs. Sigh……too tired to go into it all. I am not feeling well at all. I get robbed of my sleep as even just lying there is uncomfortable. I hate this. I thought writing might help. Nah…