Another Week = What are we doing?

[SarahL2491]

Another week has started and as per our tradition, wonder what everyone is up to?

I've canning chores and count down chores to do, 2 weeks from leaving, which will fly by.
The good news is that so far (2 weeks and counting on Wednesday) I have had no side effects from my Tysabri this month!  Yeah!!!

Other than that, nothing going on here except anxiety/packing/leaving anxiety  

Everyone have a good week!

[kwarendorf]

I'm packing, and packing, and packing...Movers are showing up a week from Friday!

[rendean]

Sorry to hear about the kidney issues.
I wouldn't worry too much about the capsule getting stuck. Keep a good mindset and I'll keep all my fingers and toes crossed for you for good luck!

Keeping you in my thouhgts,
ren

[rendean]

Sorry to hear about the extra chemo!  aometimes I wonder how some of  these docs passed their board exams at all.

It sounds like you are making the best of a bad situation but it still could have been avoided. I won't use the words I'd like to but you and I know what they would be,lol.

keep your head on straight and let me know if I can help fill that brain of yours if it gets too lonely in there!
Hugs!!!

Ren

[Lulu54]

It is another interesting week for everyone from the sounds of it.  I'm hoping my schedule slows a bit so I can be around here more - there are a number of new or newer folks here who I have not met or followed- and I know catching up will be difficult.  

I messed up my back on SAturday, bending over a the waist to pick up something from the floor.  As soon as I bent over I felt the pop and knew it wasnt' good.  IT's one of those 'time will heal' deals.  Since I am on coumadin for the blood clot I can't take the normal anti-inflammatories and pretty much have to tough this one out.  Ice packs are my friend right now.

PT is going well and I am getting lots of good suggestions for ways to correct my balance and strengthen my core for my wonky gait. Now the key is for me to actually do these on my own.

Johnniebear - the sounds to me in the MRI are more like a construction site with jackhammers and other heavy equipment  and a really congested city, such as Hong Kong with cars and scooters moving everywhere making noise and honking horns.  Good luck with this next one- I hope this is the one.

my best to everyone - L

[anon07072023]

Alex, I'm glad that you switched doctors. I guess chemo is just a walk in the park to them. Now you have to do it all over again??!!  What's wrong with these doctors???

I went to the urologist today - maybe my first kidney infection or a kidney stone? Have to wait and see with the results show.

Wed heading up to Denver to prep for my capsule camera endoscopy on Thurs. I'm nervous. I hope it doesn't get stuck in me and they have to go in to get it out.  

And I'm trying to work in-between.

[SarahL2491]

Oh Alex, I so hope you get better.  You kick butt with these idiot doctors!
You are so right, they are losing absolutely no sleep over things that affect you!  Sending you hugs.

[SarahL2491]

My first infusion went fine until about 2 weeks out and then got strange respiratory and throat problem that no one could put a finger on, neuro put me on Decadron, a steroid, before each infusion and all was fine after that, except for other side effects which cropped up.  Neuro addressed them individually, patiently, and this last one has gone without any side effects so far!

When I am hydrated, I have veins, when I am dehydrated, they are a puzzle but good nurses can work wonders.  When I worked, they called me for difficult ones, sometimes it took me awhile to find the one I wanted, and a ton of patience, but always got them.  Make sure you are well hydrated and you'll do fine, they have great nurses in the infusion centers.  Keep us posted

[HVAC]

I went to Tea party on Friday and to a sculpture party on Saturday at a big farm. I spent the rest of last week in bed really sick.

Today I woke up really mad about the stupid Oncologist at UNC. I found out from the Duke Doctor, I was too sick for chemo so instead of giving me blood, getting me to a nutritionist, getting me on antibiotics, and otherwise getting me strong enough for chemo, they cut my chemo dose to 60% so they would not kill me and did not think this was important enough for me to know.  They never were going to tell me. Long story short I have to have the SIX CHEMOS OVER AT 100% when I finish my last in the series and am strong enough. This Rock Star Doctor at UNC is not losing sleep over this.

Today I took a Grateful Dead Mental Health Day. Better living through Science. I usually stay a way from my scripts but today I took all my drugs as prescribed no more, no less. It takes very little to do the trick for me especially since I do not use them much and I have not taken any lately.

It was nice for today to just not feel the pain of my cancer or the extreme anger for getting such bad medical care at UNC. I have years tacked onto my cancer treatment do to this idiot but just for today I was listening to "Uncle John's Band" which is my Cancer song and feeling no pain!

This week I hope to get to the barn, it has been awhile, work on training Grady, declutter the house, see some friends, paint pretty pictures, or stay in bed , sleep and "mellow slow".

Mostly in my life today, I stay in my cave, listen to audio books and music, and breath in  and out. A good day is when I am on this side of the dirt and I do not think and keep out of my head. My brain is a dangerous town to hang out a lone in.

Pain is necessary, misery is optional. You can keep the misery.

Peace, Alex

[tomas2729]

I am working and gearing up for an MS walk on Saturday. Other than that, things look pretty uneventful for this week.

Have a good week everyone.

[johnniebear]

On Friday my wife and I will travel to the Chicago area,  to  have my brain MRI ,   since I'm still in limbo land  and didn't really see the point in having  a MRI six months after that last MRI.  The Mslogist seemed fine with a delayed MRI.
I've had so many MRI'S I've lost track.


After they lock my head down for the umpteenth time.   Music piped though.

         I  can hear the tech now,
       "the first scan will last a minute or two, Ok we are set,  the next  
                scan  will last 10 minutes, how are you doing?
        
here's what the scan sort of sounds like to me
( boom-boom- boom-   thug-thug.. ding ding ding)
The sounds we all have  been a custom too..


This is the longest amount of time  I ever gone without having a brain MRI.   My last brain in was  at the end of Nov, 2011.


I follow up with MSlogist on 10/01..

take care..

[torikat32]

thanks sarah how was your first infusion any problems side effects? do you have good veins? my infusion center looks really nice they even invited me to take a tour but I passed figured I would be there on thursday for 2 hours is good enough for me

[SarahL2491]

clam back sounds great!
will cross my fingers for you on Thursday, think positive!
I have my 9th on the 3rd of October, absolutely no side effects
from the 8th one, hope that's a good sign of things to come
and neuro has conquered them.

housework, no thanks, closedown cleaning is bad enough!

[torikat32]

today and Wednesday physical therapy

Thursday first tysabri infusion I hope they can get a vein on the first try

rest of week catching up on house work and Saturday we are having a clam bake last hurrah for summer