RA and other things

I’m sorry that I’ve been AWOL from my blog.  I haven’t felt like writing and don’t have much to say about my RA.  It’s there.  It doesn’t really impede on my life these days.  I’m managing it, even though I’ve had some blood work that has shown my inflammation markers to be high.

No wonder.  This year has been about Mr. Phat who started having issues last year with mobility and numbness and tingling in his extremities.  We have done the medical tour, as he likes to call it, seeing our primary doctor, a neurologist, a lyme “specialist,” the cardiologists, my rheumatologist, the pain management doctor, the orthopedic surgeon, the infectious disease clinic in 2017.

Things were ruled out, and more tests were done and he had a spinal fusion in March.  It has been a difficult recovery and the end result is that it did nothing.  Well that’s not true – it left him with severe pain in the lumbar region that he didn’t have prior to surgery.  The surgeon states that he could be one of the 5% of patients who come out of surgery with more pain than going in.  That said before he dismissed us because at this point Mr. is no longer a surgical candidate.  We had explored having cervical surgery as well for degenerative discs, but have decided that we need to explore an underlying neurological issue before we do any more surgery.

Which lead us to a new neurologist who built up our confidence because he said he wouldn’t stop until he found out what was wrong.  He ordered some tests and actually called Mr. twice after receiving blood work to discuss the results.  We were impressed with his diligence.  He scheduled a test with his partner for 10 days ago and we got there only to learn that the test needed to be done in the hospital because Mr. has a defibrillator.   This fact was disclosed and discussed at our initial meeting, but somehow got lost.

No follow up phone call from the neurologist this time, which was incredibly disappointing.  The hospital called to schedule the test and the earliest it can be done is January 29, 2019!  That’s two and a half months away!!!  Totally unacceptable but what choice do we have?

I have always preached on this blog about being your own medical advisor and asking all the questions, and I’ve followed that with Mr. and his unknown condition but it’s been frustrating.  No, it’s beyond frustrating. It’s demoralizing too.

We are continuing to search for answers and going out of our network for better answers and we are thankful for a good health care plan, but we sure could use a break.

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7 thoughts on “RA and other things

    • PAP – I have many coping skills, a good support network, friends and family but it’s still difficult at times. But as you’ve experienced the medical community can be a struggle!!!!!! Aaarrrggggghhh

  1. Leigh, I’m glad to hear your RA hasn’t been an issue for you right now. But am very sorry to hear about Chris & all his health issues. I had no idea. I knew about the spinal cushion. But not of all the other complications he’s had to deal with. I hate that you both have to go through this. It sounds awful & frustrating to say the least. I pray that they find the source of his pain soon. No one should have to live that way. I know you are a great support. If anyone knows about living with pain, it is you, my friend. You are both in my thoughts & prayers. Keep up the good fight! ❤

    • Thanks Trese. It’s been a long trying year but I’ve kept it quiet, hoping each day he would be better. Hopefully we will have some answers soon. Happy Thanksgiving to you and your sisters! ❤

  2. So sorry to hear about Mr. P. He has a great patient advocate-You! That is no small thing. Take good care of yourself during this time. You do not need a flare. Thoughts and prayers coming your way. Cathy

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