Short Update

Posted: June 20, 2012 in Uncategorized

****Day 2 Pain-Free****

Today I ventured outside for a follow-up doctors appointment. I never imagined just a short trip would exhaust me so much! I slept until 11:30 when Steve called just to make sure I was coming to reality in order to get ready to head out. The boys were home early too…so I'm sure that added a bit to the energy drain.

My follow-up was so encouraging. I absolutely LOVE my primary care physician! She is the glue that holds the rest of my medical team together. After each hospital visit, I am required to follow-up with her and she makes the necessary arrangements with everyone else (avoiding unnecessary appointments). You know you are in a good place when your doctor gives you a hug! We talked a bit being she was overseas and was not able to see me at the hospital. She already met with cardio and neuro and shared with me what the consensus seemed to be at this time. long story short, because my arteries are smaller around my heart, when I get really busy and choose not to stop, right around the time my CIDP decides to act up if I let it go…my heart works extra-hard to pump the needed blood through these small veins essentially making my pacemaker kick on, making my heart rate cycle over from low to high. When this occurred before my pacemaker was installed, I passed out which immediately stopped the cycle. When this occurs now I end up in the ER requiring fluids, IVIG and morphine. They are looking at a medication I can take if it gets to this point again that will prevent my heart rate from getting to the point that kicks my pacemaker on to lower it back into the cycle. Oh the joys of technology…but this made SO much sense! She also mentioned that my pacemaker kicked on over 153 times, recycling constantly. Good point here is that my pacemaker IS working. Negative point, my body is exhausted from overworking. She compared my exhaustion to those of heart attack survivors. My mind was blown…she did not dare to make that comparison?! I'm learning to notice the early stages of CIDP and warning signs that I need to rest. I now fully realize the consequences of putting my health below other priorities. I'm still on rest until Saturday. I have permission to “work” and “resume activity as tolerated” effective Sunday! Let's see if I can start slow this time (PBCC readers, hold me accountable to this!).

A friend emailed me the picture associated with this post. She told me it reminded her of my blog. Can you relate to this picture? Can you think of anyone in your life that you can send this to? I sent it off to three very important people that have shared their life with mine (hence the importance of authentic relationships). Feel free to pass it on to someone special in your life!


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