Thursday, October 22, 2009

Feeling Normal

For the last three days I am starting to feel normal again - I am now remembering what that was like. It is strange not having to go to appointments every day. I know that I am taking a break from antibiotics maybe if I am lucky longer, but I feel good finally.

Saturday, October 17, 2009

The picc-line is out for now

Had the picc-line pulled on Friday just about the same time that I should have been flying out of here for the Pasadena trade show. I finally realized that it really was a good thing that I stayed home, the skin site under the dressing was red and irritated on it's way to being what they call "Angry" not a good thing. Hopefully, maybe, perhaps I won't need another one but maybe I will but for now they are giving me a break from the antibiotics and perhaps I can have a little of my life back and not always in the car driving to doctor appointments. maybe I can have time again to paint or do my instructional DVDs I am having more energy and am looking forward to it.

Thursday, October 15, 2009

Good thing I am not in Pasadena

It was a good thing that I canceled my trip to the Pasadena trade show
I got the CD57 tests back - they better ..I had them an hour apart and got two different results
one came back at 40 that was taken at 1:33pm and the other at 67 taken at 2:40pm (I was at 19) in both cases the numbers are better but the difference doesn't make any sense. This is suppose to be a cell marker and should be affected by the time of day or if I have eaten - we are looking more into it. In any case it is better and I do feel some relief.

The big problem right now is that I still have my picc-line and am not on antibiotics right now due to liver enzymes being elevated. On Monday I had a dressing change, we have only been using one kind of cleaning solution and this time they used two almost immediately my are started itching, I thought perhaps since it was a new dressing. but it was an allergic reaction- and most likely from the solution- it has been getting gradually worse as the week has gone on we decided to pull the picc-line to give my liver and arm a break.

So I made an appointment to have it pulled out and went to the hospital but the nurse never showed up, no one could find her, no answer to pages or calls and no one else could remove it - no ER doc's or nurses, the intensive care nurses were freaked and didn't want to touch it, almost the same thing happened last time and it just got worse from there on until the reaction became systemic (and this is happening when things are going well). I considered going to the next county but I didn't know if that would be any better - it didn't seem to make a I will have to go back to the hospital tomorrow.
I was just in tears - I am tough and handle it just fine until I see that no one knows what to do or where any one is - then I get overloaded and break down. It is suppose to be easy to remove but the big deal is to make sure that the whole line comes out intact. Good thing I am not in Pasadena.

Wednesday, October 7, 2009

The wind is out of my sails

It looks like I am having a major setback and might not make it to Pasadena after all.

I got some bad news from my doctor yesterday about my CD57 test it dropped back down to 19 after climbing to 57. What happened I thought I was feeling better in general, I have had headaches for the last week and joint pain so I did sort of feel as if I was in the beginning again so what happened?

I had more blood tests today ...same CD57 test in two different counties at different labs to see if the test was wrong or if we can find some inconsistencies.

I am seeing my doctor tomorrow and we will decide if I should cancel my whole trip, it just might be too much for me. I have been having a few issues but in general I thought I was doing really well. My attitude has been great - I believed I was on the winning side but the news just took me out and let the wind out of my sails.