Return to Standord Update:
On August 4-5 I went back to Stanford. We drove from WA.
I had a CT scan as my insurance did not pay for a repeat MRV---well the first one was 8,000 so I understand that as a CT is like 1 grand. SO I had to take high doses of benedryl and steroids again to tolerate the iodine dye. That is 50 mg benedryl at 6 pm, bedtime, and the morning of treatment. that is a LOT of bendryl, total 6 times as much as a sleeping pill dose.
Big change there: when I got the benedryl for the venograms/surgery 2 months ago my bladder shut down I had to get a catheter as soon as I got in to the admitting.
THIS TIME; My bladder worked well all night long. No problem! I slept great woke up like 3 times to go to the bathroom then went back to sleep. I was totally surprised as I EXPECTED to be miserable and to need to self cath. I was shocked in part because I had not noticed anything in my daily life to suggest big changes were happening there.
As far as walking, Stanford trip one on may 18; I made it to MRI by myself with my rollator but only just barely. Later in the day I got an orderly to push me in a chair to dopplers and Angela came and got me for Dr Dake in a chair.
This time I was prepared to get the orderly, but I decided on the spur of the moment to try it and get one if I needed one. I walked to CT, at least as far as the MRI had been, and I was OK.
Then it came time for the lab, again got there with the rollator no trouble. Then walked out front for Hubby to get me...... and we immediately went shopping at Safeway for groceries and I PUSHED A CART... in the store.... for half an hour! Then we returned to the room and unpacked our food rested for literally only half an hour and then I was dropped off at the front of the hospital again for the after noon tests. Doppler was first; third floor across from f unit, I got there with the rollator again.
I had assured myself I could use an orderly-- but I was fine even though this was like the 4th big thing I did that day. I did not walk fast but the leg just kept working its same bad way instead of quitting on me. I felt tired and disabled as I walked, per usual but I was able to keep going.
after that test--I had a wonderful guy who had read the Z papers and understood what we are on about here (dopplers were normal BTW)-- I went to the cafeteria and got a soy yogurt and sat in the sun in the courtyard to eat. Sharon called me on the phone and we had as lovely chat...using up the battery.
Then it was time for the MRI and it was in the Blake Wilbur building. I saw a building out the door where the sign poipnted and thought that was it....
Noooooooo. Blake Wilbur is through the courtyard, past the building you see, through the parking garage, across the street and down. If I'd have realized I'd have gotten an orderly cause I'd have assumed I could not go that far, but by the time I realized the building I had thought was it was not, and I had to go across the parking garage, I was partway there so I decided to go for it.
This was outside, in 80 degree heat at 5 in the afternoon.
I did it with an even but slow pace, feeling disabled and like it was hard but the last step of that walk was nearly like the first so in other words not stumbly and risky walking as I would have expected.. Bill estimated the walk at 1/4 mile and the total day's walking at at least a mile. He's a track jogger so I believe he is probably close. It FELT like 5 miles but that's just me
the next morning I walked to dr Dake's office as well. From the front of the hospital it is probably 1/4 mile. I walk slowly and with effort--sort of DELIBERATE if that makes sense, but there just seemed more assurance and almost none of the feeling that "I am going to trip any second".
Everything was normal and I am off coumadin, follow up in 10 months. The office is BUSY. we were kind of a squeeze in...he had a guy on the table (in the OR) and had just gotten out of an emergency staff meeting....
Back at home, I took the opportunity to drive myself to the lab. I put on shorts expecting afternoon sun though it was only 68 and cloudy as yet. I got in the car and was all the way to ALbertson's, 11 miles before I realized I DID NOT HAVE THE HEAT ON IN THE CAR....FURTHER IT WAS BLOWING COOL AIR ON ME THE WHOLE TIME....AND i WAS NOT FREEZING!!!! or spasming or anything. I felt cool but I was keeping my body warm.
This has been one of my "100%" symptoms. Get in the car, freeze, so turn on the heat no matter how anyone else feels about it....unless it is 90 and I already got too warm, then demand the AC
. I just could not regulate my temperature. SOOOooo much better now.
I get asked if I feel lke my MS is "gone". I don't FEEL that different and these changes are subtle. MY Bill thinks I walk better and obviously the distance I CAN walk with the rollator (a walker type device) seems greatly improved , but I do not have a FEELING of being "cured" nor do I feel like I am less disabled. I still walk badly, but I have to tell you; the last time I tried the mall a year ago it was awful, I am thinking I may try it again soon. I think I might be able to do it.!
I am also thinking of the walk aide or bioness, that process got cut short for stanford so I may be ready to take that on now. I used a walkaide in the office and for a day at home, it was OK, but I kept knocking the tilt sensor off. I may try the bioness too before making a decision The goood thing about that is that the bioness uses a tilt sensor on the shoe and I can rent it for a w hole month and see IF I like it.
my insurance paid them off already at Stanford!!
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics