Pruning privileges!

I had a wonderful, busy weekend and did not feel worn out at any time.  I did feel very very sore.  Friday I had a meltdown that required a couple of crosswords for recovery.  Mindless solving to stop thinking.  Meltdowns usually happen for a reason (one hopes!) and provide impetus to act.  Action going forward is more pain medication.  Pills Pills Pills.  Tylenol, which is not so great for a bad liver or ocycodone which is not so great for driving.  You will have to ask to find out which one I'm taking, because assuredly I will be taking something.  The constant pain was just working on me.

Thursday I saw Dr. Abhyankar, always rewarding.  I can't think of the exact word.  I trust him, he has lots of ideas and he is honest.  (Ironically, he is the doctor who told me twice in the hospital "we're running out of things to try.")  It's just a big YES! when he walks into the room.  We talked about the joint pain and restrictions and he recommended Cellcept which is an immune suppressant.  He said we could also try Revlimid before we resort to Prednisone.  I had 2 bottles of Cellcept left in my pharmacy so I fished them out and started taking them.  Expecting to feel results in a couple of weeks.

He granted rights to prune and collect debris in the garden.  "Just wear gloves!"  So I bought some latex dipped gloves to wear over my latex gloves from the clinic and I've been out twice.  I can deadhead too.  This is very cool.  I feel like I belong in the neighborhood now.

No big dental work, like replacing a 20 year old crown, til after the 1 year mark...coming up soon.  Two more months.  About enough time to plan a very fine party.

I went to a very fine party Saturday night, an Irish Catholic wedding.  Nobody remembered me!  I had to announce myself to everyone.  I do look different but golly!  These are people I partied with 3-4 times a year but I haven't seen them for a couple of years.  Guess that's just how it goes.  Didn't stop me from enjoying myself.

Dr. Abhyankar said the pain I'm having is inflammation not only in the joints but also in the muscles.  This would explain why when the physical therapist had me do a stretch and asked "can you feel it here?"  I was always feeling it "there."

I have not had the liver biopsy yet, nor have I had the pulmonary function test (see first paragraph above.)  I don't even have the full results of my labs from Thursday.  I am hoping the labs will show low Vitamin D and taking prescription vitamin D will be part of the pain relief regimen. 

Since I am no longer on the critical list, I really have to be my own advocate.  The clinic staff is focused on the more seriously ill, as they should be.  It's up to me to keep reminding them what I need.  Mondays are tough days anyway, so no answers today.

Baby Ella is scheduled to arrive next week, May 4th.  I'm planning to be in Chicago for that event.  Annie's mom is going to take the Harrison duty so I can be in the waiting room at the hospital.  How wonderful is that?  She has much more grandma experience than I so I will be watching her with HB and taking notes next week.  Annie has provided us with a lengthy list of dos and don'ts and howtos.  I'm very happy to have this list, but it is a bit amusing in its thoroughness.  Her dad is having a fine time with it.  I am just so excited to be able to be there when Ella is born and be able to hold her in the first few hours.  I tear up every time I think about it.

Mom is starting her second week of radiation and is doing fine.  She has cancelled a trip to California to see her grandson perform in a school musical which is near the end of the radiation schedule.  She is hugely disappointed.  I doubt if anyone she tells that story to understands more than I how she feels.  I appreciate the basics of life in a different way than I did before my long isolation.  Perhaps next year we will go together to watch the boy in the musical.
~Cathi