TheIcelandicPrincessNewNeck2022

  I have been attempting to do more “normal life” but talking to a relative on the deck (meaning I was sitting up for about 5 hrs w/o stopping) was too much for me. The next day was a couch laying day.  I have been able to get some referrals set up though.  Still waiting for the swallow assistance (it is still an issue…so eating out is not very easy for me!).  But I do have a July 14 UCSF neurosurgeon meeting.  This gentleman was chosen by the docs there to be mine b/c he evidently has experience with EDS.  SO does my new ophthalmologist! I could not believe it! I was so excited to have someone understand me! My left eye cataract can/should wait til I am more recovered. Shooting for next year maybe.   PT is set up for early July.  I am following the east coast PT’s advice for now. A mile walking is much easier (most days) AND I can swim carefully as the east coast PT has recommended.   Ahhhh!!! So I AM making progress! It is important for me ...

  I was approved for PT so I met via zoom with the DC specialist who is also an OT, Emily Jeter.   She has a protocol for the rehab of these surgeries and will oversee the local PT who will be working with soft tissue and on site care.  She knows EDS. I am not sure I can find anyone who does know EDS here but I am hoping that she and also Zingman’s group can advise local people.    I am happy to see I am on normal target for recovery and realizing this is no overnight process.  I had my ear repiercecd, my hair trimmed, and a pedicure so I am feeling more normal.  ( As if that would ever happen!?) I do still have to rest several times a day.   If I do not pay attention to my body it makes me pay attention later.  I am attempting to get all the various therapists and appointments scheduled over the next few weeks.  This means a lot of calls and even those I have to space.Swallowing some better but PT said there is still some swelling due t...

  OK! Great visit w Doc. She is very happy with my progress.   I am too! She is giving me referrals for PT, both in WA DC and also locally, a neurosurgeon locally to know what has been done already; a speech therapist to work with my swallowing, speech, singing too. (Because I seemingly cannot!) and also to do a cardiac eval for my murmur which has been there since kids born (Kirk is 40 in fall!) but to be sure that my vessels are not any problem due to the EDS.   She is definitely thorough so that helps for sure! I have been doing SO WELL but I have to admit that going to the doc really exhausted me so I had to sleep and also rest today.   It’s lovely hot outside (93 at this time!) but that feels good.   Doc says to put heat on the knots in my upper shoulders and ice on neck.   This should help some!~ YIPPEEEEE I am doing better! 

  I’ll update tomorrow or soon after the doc visit but I am so happy to be at 3 months! I can start back on my antiinflammatories! I feel I can walk a mile now (after resting) with a normal 85 pulse instead of over 100. This shows great progress.  Also I have noted that the cerebellum issues (ataxia) are SO much better. Although I realize I do have gaps in my memory and unclear if this is from the cerebellar pressure or from Norco! BUT am still having some struggles at times with verbal fluency (which is also from this) but the word searching and fluency is better.  So maybe that will continue to get better. I also contacted my special PT in WA DC and she will do a zoom call next week so that we can get started that way. I will need to get a referral tomorrow at the doc. 

Hi everyone I am sitting on our Creekside Deck with an ice pack to my neck b/c the Left Trap and neck constantly nerve charges with a swallow or whatever.   It does help. I am hoping it all goes away but I am still sooooo soooo much better than before surgery. This week I had a couple ankle and knee dislocations or out of alignment so that slowed me down.  Yesterday I was able to walk 1 mile with a pulse under 90 most of the time which is better POTS. But today was later, less hydrated possibly. In any case closer to 100.   I had lotsa conversations with ppl today and my friend Pat L;’s Birthday! She was w us at the hospital as my extra nurse! In any case to be honest I have to rest maybe 1-3x a day.  And my swallowing is better but still not where I would like it to be. Next week:  doctor plus haircut!