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Member
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Join Date: Jan 2015
Location: IL
Posts: 279
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Member
Join Date: Jan 2015
Location: IL
Posts: 279
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Quote:
Originally Posted by Littlepaw
There you go! You keep that fighting spirit. 
I know it gets tedious looking for a doctor but if the ones you have aren't helping then move on. The degree of function loss should be setting off alarms not apathy. And pain should be treated not accepted if possible. Definitely demand more from your doctors.
It may be worth looking at a rehab outpatient or inpatient program. The admissions people could let you know. It's their job to determine if patients are a good fit for their program. I am really surprised your wait has been so long on the other program you were on the list for. Ugh.
I think checking into the NS at Northwestern is a good idea too. It's just information and the Peripheral Nerve specialists like mine have a different approach and even different diagnostics.
Remember my mantra to 'start low, go slow'. If you start at two minutes on the bike and build to five that's just fine.
I  you too. |
To be honest, if my daughter wasn't willing/able to help me financially over this hurdle, selling/moving would be my only option and I wouldn't bother wasting time finding new docs.
As luck would (maybe) have it, one of the very local pain clinics I contacted a year ago, is now accepting my insurance and new patients. I spoke with staff there at length this afternoon. The problem (or solution) is that I need a referral from a PCP in their health system (my current PCP is not).
Conversation with my case manager got me to re-examine the role of the PCP with chronic illness. I guess I never pieced it together for myself but reflecting back on my son, it makes absolute sense. I don't care that my PCP doesn't prescribe pain medication in the big picture but, in the small print she is only the referral queen. She has not handled any real issue for me at all. In fact, what she attempted failed miserably (round 3 of gaba...wouldn't listen when I was telling her it wasn't helping, back tracked on what she proposed at the office visits, etc).
I'm angry. I'm angry that my lifelong dream is now not a possibility because of delays in my treatment. I'm angry that I am dependent on someone else for nearly everything now. I'm angry that my daughter has to use some of her trust fund to support me because my function has decreased to the point of not even being able to work as a receptionist. I'm angry that I have not been heard or listened to. I'm angry that I blindly doled out faith/trust only to have that not reciprocated and smashed.
With that anger, I am trying to find strength. I'm trying to think outside the box. I'm holding on for dear life.
Thank you for being here for me
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Believe in the Strength of Faith and Hope, within there is Peace and Love...Always ~pe
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