Pushy? Nope, just self-advocating!

Back in January, my Rheumy and I spoke about the possibility of increasing my Remicade infusion dosage.  She wanted me to see how I did after another infusion.  My flare got worse and as I have already documented...I feel crummy.  Prednisone is not enough, though it is helping some.  My Rheumy is now on maternity leave so I have been going back and forth with a nurse in the office and the doc that is taking care of her patients while she is out.

I have been updating them on symptoms and ended up with an increase in prednisone...blargh.  It is helping, but not as much as I would like.  So I asked about the increase in Remicade... "no" they said, increase Celebrex to 200 mg/daily...

Sorry, already on 200 my daily, plus the steroids!  I have had two infusions that did not help me feel any better, I do not want to wait.

Wait until your doc is back and you can discuss it then.

No.  We discussed in it January and February, I have had 2 infusions with no relief and have another scheduled for this month, a full month before my doc returns and I will see her.  I want the increase in Remicade.

No, we need to discuss with YOUR doc.

I already discussed with MY doc.  I want the increase.


Okay, your next infusion will be the increased dose.

So frustrating. It shouldn't take emails over three weeks for this.

At least my next infusion in 3 1/2 weeks will be an increased dose, hopefully that'll help with all this.

I was so bummed last night, unmotivated and exhausted.  I haven't done yoga since last week.  My energy is low and I am hurting.  Last night I realized that my scalp is all inflammed again which means more hair loss...awesome.  Nothing like hair loss to make me feel even more bleck about myself right now.  I am giving myself this moment.  I can feel annoyed, frustrated, pissed off, and mad at my immune system for causing inflammation, swelling, pain, hair loss, rib pain, sterum pain, hand and finger pain, leg cramps, foot cramps, low energy, and fevers.  GRRRRRRRRRRRRRRRRRRR!

I am going to go home, meditate and try to do some slow flow or yin yoga for immune health.  I will refocus and make the best of how I feel.  I will rest tonight knowing that I was able to advocate for my medical needs and hopefully that will make a difference.



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