Thanks all of you for such a fast response. It brought tears to my eyes.
To answer a few of the questions
My husband is the most supportive, loving and caring man. He knows mornings are really bad for me. He will set the alarm at 3 am to get me my pain medication and water. I just don't want him to worry.
I have 2 referals to a PM clinic. Its been two weeks with no call with an appointment. I see my PCP every 10 days for a refill on Lortab 10's. I take three a day. Just to get me through until I see a PM. I'm afraid to state it isn't enough maybe codiene isn't the one for me.
I was raised with a mother who was an RN. She took care of everyone and neglected herself and died at 50 with a condition they could of prolonged. I know what your thinking why do a repeat? I just can't help it. Since she died now everyone comes to me for answers and support. When she died I helped everyone else with there grief including my three children that loved their grandmother dearly. After 6 months of being strong I fell apart.
I'm just going to have to learn to be on the receiving end. Its not part of my nature.
Bleak for me is I have no control over the progression of the diseases. I can only take it step by step. I will lose the kidneys don't know when but it will happen. All my issues are labeled progressive and will get worse over time. The PKD will cause the pain to get worse every year. I have felt this over the last 5 years. Went from pain medications a few times a year to daily now.
I have so many doctors they all disagree with my medications and restrictions. Cardiologist wants restricted water intake, Urologist is fighting that one. I deal with mixed messages from doctors monthly. I take 19 different meds a day. I have tried to remove some of them but each one is needed.
I think I am just starting to feel the weight of all the stress, pain doesn't make it any easier. Sometimes I feel the pain is in the forefront, if I'm in pain I can't seem to get all the details worked out with where to go from here. Some might call it depression. I take meds for anxiety, to help maintain the blood pressure its also stress induced.