Frustration Mounts

Today was another of frustration and I’m sad to say I am back to battling the doctors. As you know, I have been having problems and complications with my steroid taper and trying to get my adrenal glands to work properly. I called my endo again today and she blew me off essentially telling me “it’s all in my head.”

Over the weekend my blood pressure spiked again and my fatigue and pain became even greater than before. I spoke with my pain specialist and he reassured me it was due to the steroids and my adrenals not working properly. He is sending me another prescription so I don’t need to travel and I have a follow up appointment in two weeks to make sure all is working well.

So I was prompted me to call the endo hoping for some tests to get the answers I needed. I had called her last week and she basically told me to suck it up and stop the taper until I felt well again. Apparently I was wrong as she told me we ran blood work a couple of weeks ago and she won’t authorize it again. It was more than a month ago! I explained to her about my blood pressure (bp) and increased fatigue, nausea, insomnia, skin infections, etc. and she told me it was not likely to be related. Meanwhile, I had done my own research and know that these are all signs of complications from surgery and a bad steroid taper. She told me to get off my steroids and I would feel better. I commented that she had me stop the taper. The doctor agreed and told me they were my problem…didn’t she just tell me that the steroids weren’t related and not my problem? She was very confusing and I am not sure she understood herself or was listening to what she was saying. She was only annoyed that I had called again this week. Afterall, this is what she had asked me to report when I saw her last time - these are all signs of an adrenal insufficiency that could land me back in the hospital. She told me to get a physical from my primary care doc and double my bp meds…then she told me to just double them…mind you I’m on very high doses of these drugs…I’m not doubling them until I speak with a doctor who will see me first! That’s insane and I could make my bp go too low! And then she told me not to see anyone else - she would take care of me! Yeah right!

I called the primary care doc who originally diagnosed me and scheduled my physical for next week as well as just to chat and see what she thinks. At least she listens! I figure that if I have the physical and prove that I don’t have another tumor or other problems I can tell the endo to bite me! II have found another endo that has dealt with pituitary patients in the past and have an appointment with her in the next 10 days. I should at least check her out and make sure that she knows how to treat people like me…then I can dump that moron who wanted me to double meds without checking me! My primary care is amazing and I hope she will still listen to me. She should be able to help me out like last time.

Tomorrow I start physical therapy. I’m not sure it’s a great idea since my bp has been so high but I figure at this point it can not hurt. At least if I had a heart attack they would listen. I am going a couple of times and see what they recommend and try to keep it cheap. But then again, I don’t want to kill myself by doing something stupid either.

I can not even begin to tell you how frustrating it is having to fight with the docs again. I had surgery and I’m supposed to be getting better – right? I do not have the energy to wage these battles! But knowing me and my stubborn streak I will…I am just exhausted! It was hard enough the first time. I just can’t imagine having to go through all of this again! I am emotionally drained and just want to get better so I can get my life back. Is that so much to ask?

For now I’m self-treating and will take a small dose of bp meds if I get really bad and hold out on the steroid change for another day or so. If I don’t feel better soon I’ll increase the steroids since I know I feel better but it is like taking a huge step back! My head is spinning thinking about all these things I have to do all over again and all of the complications I’m having. I wish my body would show some sign of progress!

There’s always tomorrow, I guess…