The wait for a consult with the Rheumatologist is wearing on me.  Though the prednisone helped, it seems to be doing so less as the days pass.  I have never been a patient person, and though I have lived with chronic pain and fatigue for many years, feeling physically ill for months and months on end without reprieve, is a new record.  But worse are the emotional aspects of trying to advocate for myself.  Since the neurologist had planned to do a muscle biopsy at one point (and I never understood why he stopped short) I decided to call and see if he might consider going ahead and doing it, thinking any head start we could get toward a difinitive diagnosis would be helpful.  It takes me a long time to bounce back under the best of circumstances and it’s clear there is some new disease process, so my thought is, “lets get the ball rolling”!  In the course of that phone call the nurse informed me that the neurologist had written in his notes that he recommends that I follow up with my PCP and seek a consult with a Rheumatologist.  Thing is, that is not what he said to my husband and me.  So there was a whole wasted month before I even was advised to do that as a next step.

Now I ask you.  What good does it do for him to write that in my chart and not say it to me, the patient?  What he said to my husband and me was that I should follow up with my sleep doctor and “find ways to be more active“.   Well I was active until I started having weakness so profound that I was afraid to go for a walk for fear of not being able to get home!   I was stunned speechless by the fact that he did all these tests, had no answers for me, and that his only advice was to try and be more active, and go back to the sleep specialist.  And it was even scarier when in the ensuing days and weeks I became much more incapacitated.

I can’t understand what has happened to the practice of medicine in this country.  The “system” is definitely breaking down.  So very many cracks to fall through and get lost in.

Oh, I do now have the appointment with a rheumatologist 3 months down the road, but that was at the recommendation of my Primary Care Doc.

So now….. we wait some more.

After some tears of anger and frustration, I turn to the Lord and His Word and am comforted by the words of the Psalmist that remind me of the bigger picture and that my God is bigger than all of it.

Psalm 46

¹God is our refuge and strength, a very present help in trouble.

²Therefore will not we fear, though the earth be removed, and though the mountains be carried into the midst of the sea;

³Though the waters thereof roar and be troubled, though the mountains shake with the swelling thereof. Selah.

⁴There is a river, the streams whereof shall make glad the city of God, the holy place of the tabernacles of the most High.

⁵God is in the midst of her; she shall not be moved: God shall help her, and that right early.

⁶The heathen raged, the kingdoms were moved: he uttered his voice, the earth melted.

⁷The LORD of hosts is with us; the God of Jacob is our refuge. Selah.

⁸Come, behold the works of the LORD, what desolations he hath made in the earth.

⁹He maketh wars to cease unto the end of the earth; he breaketh the bow, and cutteth the spear in sunder; he burneth the chariot in the fire.

¹⁰Be still, and know that I am God: I will be exalted among the heathen, I will be exalted in the earth.

¹¹The LORD of hosts is with us; the God of Jacob is our refuge. Selah.