Follow up and making strides...

So the first round of test results from new comm health doctor show all good/okay - nothing standee outee - which is good news/bad news

I was on 25 mg prednisone at the time - which is the drug that calms those things down and had been on higher doses and on it for extended period of time -

So what the tests can’t show - is what would show if I were NOT on the prednisone

Its a catch 22 - if I come off prednisone I won’t be functional (even if I could cold turkey it without the slow taper)

So unless I had months to come off, and found some way to be under constant observation with a doctor (which no one does) there is no way for them to see right now what is underneath the prednisone

So the compromise we make so I can stay functioning - is to taper as much as possible and still function and then retest all these labs about july ish and see if anything flags/shows with a lower but not completely cold turkey dose

It’s a challenge because if I am functional the prednisone is working and if it’s working it has the potential to skew the results….

Tap dance requires balance

She is not crazy about being on steroids long term - and neither am I. She did write me a taper down dose.

She doesn’t NOT believe me, but she also has an ethical responsibility to follow medical standards of care in our current health system

So that is where that stands atm

Taper as low as possible without landing in ER, retest this summer.

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Taper is going well overall - breathing steady like I never had a breathing problem

Swelling weird stuff still happening - and dr lady wants me to take progressive pictures of the next few rounds - since insurance only wants her to spend 15 mins per patient and she can’t come follow me around to see with her own eyes… so we will document it - again she doesn’t not believe me but she needs something tangible to go on

Coming off prednisone is unmasking some hellacious low back pain. I had hurt my low back pretty bd with the tripping over chihua hua  like a year ago may or april - where the little beast scared blizzard and he hog tied me with my leash - it had gotten some better but when i rolled down the hill in feb it got slammed REALLY hard. I have had numbness in both legs, really symmetrically actually since feb - and my low back has been cranky even with steroids - but coming off em… holy shitballs….. I can’t lean forward from a straight stand without vomit level pain …. So she is sending me for xrays - I doubt much will show, its far more likley soft tissue diskee thingy  - and walking will help oodles with that.. But i am pretty sure it’s a permanent thing. Really odd not being able to feel bottoms of my footsiefooz - and if I lean forward from a straight stand about ½” at the waist - my whole bum goes numb - both cheeks… kazingers

We talked about foot and that it’s healing but I haven’t been to p.t. Cause… cars and timing (I am not worried about that part myself - with massage background - pretty good on self care there and mostly it’s just time - similar thing with soft tissue and left leg) I am already doing most of the things, and walking, again is my best friend. Foot with broken is only about a 3-4/10 and only when I step on it or when the doctor pushed on it. Soft tissue foot - into knee - cranky at a dull 3 ish ache with weird sounds and occasion pain spikes. Manageable though. Not like real pain - like cramps lol

Weight down 2 more lbs… not much  - but still going the right directions - still weird to hear myself say “I’m down to 192”.... Again, walking will help

I keep going back to the walking and I am physically able to walk - I can do the 3-6 miles - right now it’s nathan and I getting through that backlog of stuff as mentioned in my last novel - getting our morning pattern working and our sleep settled. Mori is still waking up to pee about 4 am - which is a short time to go back to sleep and be up @ 6 ishy to get ready for walks @ 8 ishy -

We have made a hella dent on house stuff and yesterday had help from happy good peeps - for both toilets (they are working) all house is draining right direction instead of shit literally trying to run uphill.. Our septic pipe had sunk in the freeze thaws this year and settled too low for water pressure to press right

Living room is almost all done set up in a way that we can now keep it clean - easily - we had help with getting wheelz on crates and hoses thingys outside and all the misc projects  - including helpers picking up the stuff at the hardware stores saving us drive time

Tomorrow - argo fixes the old blue roo and (knock on woodys and fingers cross to not jinx) we should have 2 cars by tomorrow or end of week

I have been getting massages and doing my showers to keep the detox going the right way - skin is feeling better after the bodywork and hot showers  in spite of aunt flo’s voodoo doll cramps and second period in a month

Today we had help - super much appreciated help - with a costco run and groceries allowing us to get to doctor and work on house stuff more

I am glad the time at house coincided with kramps so I don’t feel bad missing work

The things we are setting up are deep clean or the things that need to be done to keep the place kleen - so not just humdrum routine - the stuff that will allow us to keep going even with work kinda stuff

Nathan and I are working on healing the cross wise - and being kind and gracious to each other with sleep dep. And pain and physical challenges and money stress…. We are working on amping up the tenderness and compassion and as always fine tuning communications

For some reason I can’t seem to eat much lately - not sure what’s up with that - but I keep thinking the idea of food sounds good but not actually eating much - if it goes on for a few more days will have to figure that out - i think there is a chance I am in more physical pain than I am registering or willing to acknowledge and that may be impacting my foods input.

The dizziness is mostly better only a couple times a day - and shorter - and I can get back up and moving pretty fast… it also seems like may be partly pain related but also is the prednisone coming out of system

I touched on before -the doc was interested in the 6 benadryl a day - which is my low standard dose - actually - but she did say that hi doses long term can cause the not able to pee stuff - which is good to know so I can account for it

I think that’s most of the stuff….

Not much at all, right ? lol

Now, off to a dinner treat with a friendly friend :)

I also just want to say thank you to everyone who has helped with all the things this week - so many people helping and just hearing us and getting it … words don’t really cut it but we really couldn’t have gotten through this without the help this week.

HUGs - so many hugs to all .

Now, food!