The Journey

Well spring is in the air....the snow is gone, I have got the sunroof in the car open and wearing shoes with no socks!  Love to see the sunshine, it brightens up my world :)

And with thechange in weather, I've decided to have a shift in attitude to go with it.  I have alot to be happy about these past few weeks.  I have had luck with the lasix and can now wear my regula

I had to stop working right after New Year's.  It has been hard for me to lose that part of my identity but also hard in that I miss the social aspect of my job.  I had a good many friendsin my office.  I know that many of them miss me also.

I have had many phone calls and visits from co workers.  I am very grateful for their continued support.  Many have brou

I am sick and lots of days I am uncomfortable or in pain or scared or all of the above.  Lots of days I feel badly about this illness.  Lots of days it is hard to remember how I used to feel...healthy and energetic.

And then your 22 year old daugher calls you to tell you her very close 24 year old friend died in a car accident.  And now I remember why it can always be worse

Well I was sure it was ascities.  I have a distended abdomen and my general physician said she felt it must be fluid.  My other doc who sees me bi weekly noted an increase in my abdomen whenshe saw me last as well.

 I am not a large woman, never have been.  Oh sure I am bigger than I was in high school, but I can still fit into the earrings I wore then. (haha).  M

Well I guess the shock has worn off....but today I woke up and thought "oh I should call in sick"...then remembered I don't have to do that anymore.

A co worker packed up my personalthings from my office and dropped them off this weekend, it was strange seeing my work things here at home, and going through the boxes was surreal.  I keep thinking "but I can probably

Well, my workplace now knows I am not returning for an "indefinite" period of time.  The conversations I was not looking forward to have mostly taken place.

That was one of thehardest things I have done.  Giving up my work has been incredibly painful for me.  Knowing I won't be going back soon (barring a minor miracle) is very hard for me.

And now I know

Well this is week two of me at home.  Probably a good thing I don't feel so great...keeps me from being bored.  Doc on Wednesday sends me for ultrasound to check for ascities and whatto do about that....hepatologist at the end of the month.  However from phone and email conversations with all three docs, it appears unanimous (by them) that I should stop working now.

And

Well, for starters....
About midnight as 2012 rolled in, I had my head over the toilet bowl trying to throw up.  I have alot of pain now and doc thought hydromorphone may help to relieve it.  I have always had trouble with opiates unless they are IV, terrible stomach cramps, distention, vomiting, tenderness...very uncomfortable and not worth the price for any pain releif!

T

This is not such a good day.  Or good week I guess.  I love Christmas, it is my favorite holiday and the only one I really go crazy for...but this year I am having some trouble.

It's not that I didn't decorate or get gifts...I did.  But I am worried because I am so much more tired than last year.  My son is going to Panama for until December 23 and for no ratio

Today I spoke with my hepatologist.  He is six hours from me but very good to call.  He got the written reports of my recent CT scan and x ray.  He feels the enlarged lymph nodes andpain I am having are not cancerous.  YAY!  Finally some good news.  He does however, feel that the pain and enlarged nodes mean that the disease is progressing.  When I met him the

I have not wrote in this diary much but have been active on the site.  So much has happened...the biopsy, the results, feeling less well....being away from home for work, getting sick...being back at work....

 I realized today that a (big?) part of me is very sad that I have this illness.  I think I did not realize how a part of me is greiving for the changes that this brin

Today was my first day back at work since Christmas eve. It is so good to be back, I fear for the day when I won't be able to work anymore.  My job challenges my mind, keeps me alert and keepsme from thinking about this illness for most of the time I am  there.

Today however, I had to tell someone at work whom I admire and respect a great deal that I am ill.  A few peop

Well, it's been about 6 weeks since I found out I was sick.  I didn't know I was sick, I didn't know all those annoying things were "symptoms".  My doctor only has 2 otherpatients with PBC (primary biliary cirhossis) so we are learning alot together.  I am trying to keep in my head that I have this illness because sometimes I forget.  Not sure if that'