Almost 3 weeks post op!

Hi I am so happy to be home! I am sleeping A LOT.   This seems to necessary but also the way I tend to heal, of course.   I am finding now that I can get thru a whole night w/o pain meds and also I have been able to eat by chopping up food and/or blending it. Still cannot swallow well.   Had to go to bed at 7PM (of course we were on East Coast for 3 weeks) But i was just tachycardic and weak.  Today was able to walk slowly a half a mile, average HR 87.  It is getting some better. Basically just day to day and seeing some small improvements.  Ataxia way better, balance way better, brain fog better! Nausea better also. 

It is SO nice to be at home! Matthew is here helping and doing chores and getting groceries, food, dishes etc. etc. It is also great for me to have someone to babysit me while Phil does his thing b/c he has had to be completely watching over me constantly! 

I cannot believe we are almost 3 weeks out from surgery! I go see primary care tomorrow.   (PS I don’t care if no one reads this this is for me to remember the progress for anyone else having this procedure!)



Comments

  1. Jackie NagelApril 5, 2022 at 7:22 PM

    I’m going to read your updates and celebrate every milestone with you. Your progress is A BFD! Keep going. Rest. Move. Rest. Move. What a difference each day makes.

    ReplyDelete

Post a Comment

Popular posts from this blog

9 Weeks! Update

Image
I decided to add a photo of one of our flowers with a bee to be positive and fun.  SUMMER!  My neck incision looks better all the time but still healing to do.  I had the CT last week and the report seems like everything is in place but the calcification is just starting, but I have no idea what it should look like until I get the info from the doctor.  Which could take while! And why?????  I will tell you! The IRONIC thing here is that for the past year I have dealt with so much crap from our HC system: delays, depersonalization, to the point of tears.  And I know the system?  And I have a PhD in Healthcare Administration! (I guess it helped now and again though!)  Here is the sequence of events to get a CT result to my MD surgeon.  CT done 5/12: Report already in my Epic chart an hour later. I try to give MD office two ways to access my EPIC chart but they do not have EPIC and of course do not allow any outside links for fear of viruses. ...
Read more

MADE IT HOME~!

Image
YIPPEEE SKIPPEE DOOOO! Made it! And we cannot thank all our neighbors and friends enough for the warm reception! We have a fridge full of food and also dinner(s)! AND house was decorated (seems cleaner too than I left it but….) and flowers etc! So so sweet! It was a bit brutal getting home a few times but mostly I just clicked my heels together hoping for Dorothy to kick in.  We got in about 10 PM Pacific so we were tired (like 0100) and just hit our lovely bed and we were so thankful for it.  Matthew gets here in a few hours so we shall soon have extra help too.   We appreciate you all so much! I will rest up from the journey after a couple of days and reignite that healing process.  As an Icelandic Shield Maiden Princess Should.  
Read more

Notes to EDS Patients having this surgery

  Here are a few things to know ahead of time: 1) you will have to go off of your NSAID or Celebrex for 3 months postop. I had zero idea how much my daily Celebrex was helping until I did not have it. Every joint hurts.  Especially those more prone to dislocation.  2) You will have really shitty days post op (especially immediately postop) but I had way more weeping days from pain prior to the surgery.  (It was daily hell) BUT I think what I am learning now at one month as I ebb off the anti inflammatories that all of those previous joint issues are clearly present. 3) ALso; I need to let people know, because I am pretty positive overall and that I tend to be hopeful, that this is NOT how I am EVERY DAY.  I am no fakey “all is well when it is clearly NOT”  type person. Over the years with EDS I have been in despair many times. BUT  I am lucky that I have excellent support systems and so many lovely people in my life, and those that will help me get thr...
Read more