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Things that make patients want to give up

I haven’t posted here in nearly a year, but I’m hitting a bad patch and I need to vent. Yesterday was a really bad day. I’ve recently lost my main specialist for autonomic dysfunction. He was an excellent and intelligent electrophysiologist with 30+ years of experience. We argued quite often. Nearly every appointment for 4+ years. However, we had mutual respect and he didn’t treat me like an idiot. When I failed autonomic tests and/or other doctors said my case was too complex he at least tried to help me. He was replaced by a new grad with no experience and no lapse/orientation period. He was gone, I went months without a cardiologist, and ended up in the ER again for the first time in years because my feet lost circulation and the rest of the office didn’t care to help or listen to me whatsoever when I called to explain.

I then met with the new replacement. He doesn’t seem to care whatsoever. My last appointment in particular was very very disappointing. I had told him several months earlier that I was losing control of my blood glucose. My blood sugar ranges between 29 to nearly 300. He referred me right away to endocrinology. I went and I confirmed my problem on their two week implanted glucose monitor. I had 34 episodes in two weeks down to or under 40. Many provoked episodes up to 300 every time I ate carbs or sugar. It was clear from the second I set foot in the endocrinology office that he didn’t want anything to do with me. He told me it wasn’t possible to have both hypo and hyperglycemia, I was too young for all these problems, and then insulted my past profession. When I pressed him for treatment he told me my brain function isn’t affected until under 40, take some prednisone (I’m not doing that) and refused to acknowledge or address the high blood sugar after many attempts to ask him.

I told the new cardiologist and he also blew me off. He said he’ll try and call him but that if the endocrinologist doesn’t think it’s a problem then maybe it isn’t and that IS an answer. A 29 or 300 isn’t a problem for me but it is for every other human being on earth? Why is that? Why am I again heldto a different standard? I then tried to call around to get another opinion and was denied appointments at 3 endocrinology offices again due to the complexity of the case.

After several months a Dexcom CGM was approved. Nobody watches it but me. So I see my glucose dropping into the 40’s or rising to 300 and can’t do anything about it.

Getting my bimonthly pacemaker reset has been another problem. They are stretching it out for 3+ months and sending in a rep who has never met me and thinks she’s going to come in and dictate to me changes she’s making or tell me that wiping the data off the programmer is the same as a hard reset on the device (it’s not). She talks over me so much that even the nurse points it out and tells her to ask the patient. Then the new EP decided to cancel yearly echocardiograms because people don’t need that just because they have a pacemaker. I explained that I was getting them due to excessive pacing and excessive tachycardia to monitor for tachymyopathy. No response. My beta blocker hasn’t been working. My feet are so swollen and blue that none of my shoes fit. Every time I run my heart soars and the pacemaker drops my rate out. I’m losing my ability to run. I needed to switch it. He wanted to double it and have me prove that I get sicker first. I did. But I’m coming to the realization that no matter what I prove it’s never enough. I’ve been lying in bed the last several nights awake with the following rhythm. I’m pacing to my max rate in the ventricle at rest and it’s likely due to the increased medication causing hypotension and increased heart block. However, nobody respects my opinion or cares what I say so no matter how much proof I have it makes no difference.

Then I get a call from a case manager from insurance questioning and interrogating me about every med and doctor I see. As if I don’t already feel like a burden and guilty for even being alive because all I do is cost everyone money for an illness that has no cure. It was great to reiterate that through an insurance employee who has never met me and has no idea of how complex this case is or how difficult it is for me to function.

I was running this winter but it was abnormally physically difficult for me. I have kept that for years. It has kept me alive and out of the hospital. I’m losing my running now. My stamina since February is very very poor. I don’t even have the energy to attempt it nor do I desire to. That’s very abnormal for me. Nobody cares as usual. When you’re chronically ill you are also seen as a Chronic complainer so when you get worse nobody investigates or helps. If my healthy relative runners noticed a sudden decline in ability they’d have a thorough investigation into the cause. With me nothing is ever done. Just deal with it yourself.

So last night I became very very frustrated. I disconnected my medication pump, stopped all my meds except the one that I cannot stop suddenly without stroke risk, biked for a while and started a fast because I want the meds out of my body and I want a clean slate for my glucose. I’m tired. Completely tired of fighting with every doctor and random insurance employees over blatant facts, and tired of having an unusual case that won’t get better, nobody can treat and apparently isn’t even deserving of management to preserve any quality of life whatsoever. Would a cancer patient be interrogated over their use of cathflow for a port? Would a carcinoid case be asked about their use of a med for their condition? Would a diabetic be interrogated about why they have a Dexcom for a 29 blood sugar?

I have no specialist that is capable of helping me advocate for the heart and blood pressure medications I need to function so now that they are clearly being threatened I am weaning off them myself. I don’t think people realize the tremendous guilt patients have. I didn’t choose this. I didn’t want my life to be ruined by a condition nobody has ever heard of, seen or believes in. Of COURSE I feel like my life has become useless and I’m only costing everyone money for an impossible to cure situation. Why wouldn’t I feel like that? Especially after getting calls that nearly flat out tell me so?




This post first appeared on If Happy Ever After Did Exist, please read the originial post: here

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Things that make patients want to give up

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