Yes, I should be grateful. I am grateful. Another trip to Houston for a followup consult and a plan is in place. This afternoon I got a call from Home Health Care and a 5 day IV steroid regimen will be sent FedEx to the house. Hopefully when the five days are up, life will be as it was.
What happened that would have dampered such glorious news? My neurologist broached a subject that I am ultra sensitive to – anxiety inflicted symptoms. Clearly I am biased on what I am experiencing which I have mentioned in previous posts – I’ve questioned how much of the fatigue is “real”. I cannot explain how or why nerves seem to be affecting my muscles as they have. I would expect blood pressure, lung capacity or oxygen levels – but nerves? I cannot say definitively how much is self inflected and how much is CIDP. I do know that in a span of less than a month after being relatively healthy – I now struggle to walk and I am completely washed out by the end of the day.
I think that one of my problems is that I have been trying to compensate my struggle to walk with more oxygen. Any distance other than room to room feels like I have run a mile. In my mind either consciously or subconsciously I have been breathing heavily thinking that it will help strengthen my muscles. From now on — feel the urge to breathe more — fight it. Lack of oxygen isn’t the problem.
It amazes me that the diagnosis is based on my ability to apply upward pressure for 2-3 seconds with my right leg and right arm. Is it within the realm of possibility that fatigue cannot be measured with this methodology? Certainly over a long period of time a doctor could comparatively surmise that degradation has occured, but not just after two visits.
No doubt I am super sensitive to the suggestion and I will get over it. It’s just not something that I expected to deal with. I left the consult feeling that my symptoms were not taken seriously, the doctor at times joked and even mocked me for my questions. It was a demoralizing session. I have been encouraged by several that Houston is the place to be. Treatment will continue to be the focus and Houston (with this doctor) is where I need to be. The doctor quoted his experience for CIDP is 20% never take treatment and it just goes away; 70% with treatment – CIDP goes away or goes in remission.
Grateful that the end is in site, grateful for the odds and trusting that God is in control and nothing else matters.
Life is good.