My People

My People
My matched set of grandchildren - Oliver and Cosette

Thursday, March 26, 2015

Gut Pain Update

This will be a quickish update regarding the crazy/evil gut pain. No cute kitty pics or grandbaby updates this time. Just wanted to catch you all up/record this in case I forget because I go to too many dr appointments and Pain Brain is a real thing.

As I mentioned previously I was able to get approved for charity/indigent care with the local hospital. This also, fortunately, covers the doctors in their system. My primary care doctor is in their system so I was able to go back to him after two years of not being able to afford to go see him. Here's the thing: when you have multiple health issues and receive your medical care piecemeal through several different caregivers you have to be a strong advocate for yourself. If you have multiple pain conditions, especially if those conditions include back pain and fibromyalgia people don't take you seriously. There's this disdain as if you were lazy / low life / drug seeking. It's hard to be an activist for your own health without feeling like THAT woman that doctors hate to see coming. It makes you reluctant to be pushy. That's why it was such a huge relief for me to be able to go back to the doctor who has been treating me over a long period of time and has witnessed the multiple issues and conditions I have because he diagnosed many of them.

I am extremely grateful that there is a free clinic in our town that fills in the gap for people who have chronic illness combined with low incomes. The people there are nice and I'm always mindful that they are donating their time. The truth is, however, that they primarily deal with people who are not well informed about their health issues. If you ask about your recent lab work they'll tell you things were "fine" or "a little high" but not give you the actual numbers. When I asked once for a copy of my lab results the nurse said, "I don't think we can do that." Which, of course is ridiculous but it's just not in me to be assertive with someone who is a volunteer. I literally asked three different people before I got a copy of my ultrasound results last week. The point is that they're not in a position to be a primary care giver. They treat very specific chronic illnesses and ... that's just what they're able to do.

I'm also grateful to have been able to continue to see my pain specialist over the past few years even if it's been costly to do so. They have been the only constant throughout all of this. I appreciate that they have been willing to cooperate with me even though I've been unable to do any addition testing or new treatments due to a lack of insurance. Am I one hundred percent certain that they've handled my issues as well as they could be? No. That's my fault as well as theirs, though. They haven't pushed me or made me feel bad about not being able to do anything different. They've been supportive and encouraging about the disability process and I truly need their input to be able to win my case.

I went to my primary care doctor today and basically caught him up on the past two years, especially the crazy gut pain details. He evaluated the information we have - still no results on the MRI or x-ray - and laid out a game plan for finding out the cause of the pain. I had some additional blood work done today and he is scheduling a CT scan for me. Once we have those results - and hopefully the results of the MRI and x-ray - he'll be able to determine which way to go next. He was very reassuring and told me that any specialty I need to see is available to me under the charity care program. It is a HUGE relief to feel like the burden of self-advocacy is no longer on my shoulders. I don't have to visit Dr. Google (which I do every time I go through a bad flare up), I don't have to worry about what we're missing. I can just be a normal patient and rely on the doctor to do what needs to be done. It's life-changing for me!

And another thing... I just love how friendly and welcoming everyone is in that office. It's a large practice and fairly busy but nobody makes you feel like they're rushing you through. They called me back quickly even though I arrived about fifteen minutes early. Their records are done on a computer system (which may be very common nowadays but it's not that way at the pain doctor or the free clinic). At the end of the visit they give you a printed summary of your visit including things like your weight, blood pressure and the reason for your visit. SUCH a help for people like me who see too many doctors and can't remember from one visit to another those little details.

The only hiccup in my visit was trying to give a urine specimen. It took four attempts! I was so embarrassed! I was drinking gatorade when I got there and the nurse brought me a solo cup of ice water to see if that would help. They sent me to the lab and the lab girls refilled my cup and let me try again. I sat there FOREVER and it just would not come out! I go to the bathroom more than anybody you've ever seen. Seriously, I woke up six times the other night to go the bathroom and I only slept seven hours! I went and sat back out in the lab waiting room playing sudoku on my Nook until I thought I *might* finally be able to go. And what's really embarrassing is that I have to ask for those little "hats" they put to collect urine because I can't contort myself to catch it in the little specimen cup. I wasted all those hats! At any rate... I was finally able to go and then barely made it home because all that stuff I had been drinking finally hit my bladder.

So that's the latest. They're usually quick about scheduling testing so I'm sure I'll have the CT scan in the next week or so and we'll just go from there.

ALSO.... the plane tickets are purchased for the Gant Girls to go to New York for our new inductee's bridal shower. We're doing a quick turnaround - only away from White County for about 36 hours WHICH, just in case Cosette isn't here yet will drastically reduce the time frame where I might not be here when she's born. I truly believe she'll be an April baby but just in case.

And that's my Thursday. Time to get some mango italian ice and tuck the kitties in for the night. Love and hugs, y'all!


Karen said...

Has it been brought up with your doctors of the condition called Diverticulitis? It's evil gut pain that can bring you down to your knees and curl up into a ball on the floor. Pain so bad it overwhelms you. Something as small as a tomato seed or teeny tiny seed on a strawberry can put you on the floor. Google it and see if you can identify with the symptoms.

When I was diagnosed I didn't believe the docs. Something so small had me begging to be put out of my misery?? Pain medication doesn't work either. Enough of me but seriously look it up and ask your doctor. If it's not that, I hope you find relief and they can find out what's wrong. Take care Karen