TheIcelandicPrincessNewNeck2022

  Hi I do feel I am making progress. Less need to nap, mostly good nights.  No Norco for quite a while but taking Tramadol 1-3x/day depending on pain. I still have some swallowing issues but I did eat a Beyond Meat Burger on a bun very carefully and slowly a couple nights ago so that is better! I did see a professional stylist last week who told me I could just trim up the shaved part and then let it grow under my other hair (which I will trim to shoulder length again).   Seems like it might work! It many be still a couple weeks before I want to sit in a chair with head tugged around though. (Hey did you notice BEYOND MEAT? Anyone saying Oh my what a woman she is cutting down on greenhouse gases and cattle? HAHA) Dr. N.(surgeon) says she is happy with my CT and my progress so I am relieved! That is great news b/c I was a bit worried re: my weird bone/modified screw.  But all is holding well.   I really feel so thankful to be able to have FOUND Dr.N (Dr.Henderson...

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. ...

YES. Things are getting better for me.  Only a couple short naps a day; I made a carrot cake with cream cheese frosting and I could eat it w/o blenderizing it.  Went in the car to now 3 different gardening places to look at plants. And being in the car is easier, and so that is good! I am off Norco the last few days and just taking tramadol which seems to work so that will make all the docs happy. I still so have to blenderize some food and still struggle to swallow but it’s not as bad.  My heart-rate POTS issues are better (tachycardia, weakness when standing up).  I can go part of the day w/o my hard neck brace but I put it back on when my neck gets too tired. Also I wear it always in the car and at night.  I still have some swelling on my left neck and shoulders and the one nerve and muscles twitch when I swallow.  Hoping that still will heal up but it may not.  Today is my two month CT.  So we will see how things are healing!

  Wow.  Went through my operative report which I had not done. That allowed me to go forward and send information to Kaiser docs and also to a former doc who left Kaiser and now practices in AZ.  I told him “you know some of the docs you left me with were downright mean.  I know they are your SR BBQ buddies but hey, they can be total A Holes to patients.” He has always said to me “Ruth you never leave anything to the imagination.” (I bet he’s going to say that when he reads it.) AND also to Kaiser I offered to educate the docs there. I wrote a big FB and LinkedIn Nurses Week shout-out to the Un of MD Capital Med Center nurses and the Metropolitan Neurosurgery team, and a long letter of gratitude to Dr. Narayanan. And, the operative report being what it is, reminds me my fascia is crap and also I am going to ignore that and do nerve ablations or injections or whatever I can! 

  OK for those EDS patients having my same surgery, it is important to remember that your basic disease is still there.    So today I awoke at 7 week mark with a great arthritis flare.  No issue with the weather (beautiful sunny 80 degrees) but every effing joint was achey and sore as I hobbled downstairs for coffee.   In any case, this also revved up the issues with the healing nerves etc in my head and neck and the swallowing and upper back, trapezius is just a sore and tight like a new bone muscle mess.  I realize I went to a grocery store plus cooked a bit yesterday but I really do not think that is the issue. It would not be like this.  Also please remember that you cannot be on anti inflammatory drugs like Celebrex, ibuprofen etc until after 3 months so you can heal better at the fusion.  In any case it is unfun to have a reminder of the bad days.  However, again I remind myself that the horrible head exploding pain is NOT there. It is ...

  OK everyone I realize this may not be the best photo (given I am sitting on deck with this on my legs but…) see all those pads? There are 3 pads which a person has to CHANGE EVERY DAY! They are $20/per pack on Amazon or whatever surgical supply you use.   Get at least 5 sets unless you want to do laundry every day.  I put them in washer and dryer and they are fine.   (They tell you not to) I have used this since late summer when I was told to go to a rigid collar.   This is not my original (Lost in hospital) but this was an adult medium they used after surgery.   Just be prepared.   If you do not wash these when you have to wear them constantly then you will get rashes, plus will subject your incision to nasty nasty bugs.    

  I WENT INTO THE GROCERY STORE (masked) AND SHOPPED!!! Albeit briefly and didn’t drive yet, BUT so excited!  Before surgery I could NOT shop b/c I would get dizzy just looking at the colorful food items and turning my head to look at things would send me into a clutching kneeling mode on the grocery cart.  This was amazing! Short but amazing look at real veggies and fruits.  Going over bumps in road is less problematic because now it is joint aching not the intense nerve pain. Getting closer to being off Norco too.  I floated a bit in pool (carefully) and also have been doing the very slow walks; 10 min on the stationary bike at lowest level to keep my left knee movable.  I really do finally feel like I may be getting to a better place in recovery!  I also MADE DINNER over the weekend!  Homemade pasta red sauce in crockpot and some quinoa pasta plus a baked fresh fruit compote w whipped cream.   I do notice the “no Celebrex” still because of...