so little time

I wish I was writing more here, but time is not permitting it. Also feeling a little block, I hate to admit. Started going through boxes of my mom's stuff that I couldn't deal with last Fall when I stuck them in the garage. Here are a few things that have sparked my interest and that I would like to blog about:

!. my mom's career in healthcare. I found a notebook she kept full of accolades she received for her work as a trainer of paramedics in the mid to late 70s. This was also the time that my mom and dad served on a volunteer ambulance service in teh town we lived in. Not surprisingly, I remember that period as the happiest my family ever had together. This backs up the saying that "when the mama's happy, everyone is happy". That was definitely true in my family because my mom had the strongest personality. The flip side, as you can imagine, was that when my mom was having a hard time then everybody suffered. That sucked, now that I think about it. Anyway, looking at my mom's notebook of career accomplishments made me realize that the best part of her work life was over when we moved to Vienna. She never found that mixture of teaching, healthcare and leadership that she thrived in when she was working for Area Ambulance. My heart breaks a little to realize this, and to remember that she turned just 40 when we moved to Vienna in 1980.

2. My mom's brown wallet. Full of interesting tidbits from the early 60s, like pictures of a gay guy who called her "lil sis", and pictures of a military man named Sam Durbin, who I've never heard anything about. All I know is that I found a stash of letters from my dad to my mom before they were married, and an empty envelope postmarked 1961 or 2 from Sam. So where is the letter? did she take it out because she didn't want us to find it, or did she put somewhere special that was closer to her heart? I don't know, and I never will I suppose, but my money is on the second possibility.

3. pictures. Tim has a scanner and I would like to scan a few things onto my blog. Like my mom's 1962-3 permit to buy liquor in Iowa! It's a goofy little book she kept in her wallet, and apparently one had to have the liquor store attendant fill it in for you everytime you bought liquor? The month of March 63 looks to have been a party time for my mom and her young friends. She was just 22.

Sacred Ordinary

The above link is to my new favorite blog. I am finding blogs by middle-aged women that I find very inspiring. Women who are artists and writers and mothers and grandmas. Women who are ahead of me on the road of living creatively. Role models! I need them, they make life seem more like an adventure.

I found a link on Sacred Ordinary that is all about the art of journal writing. An interesting perspective that I hadn't thought of.
If you like this blog, you will like her links to the right.

what doesn't kill us makes us stronger?

"I am not at all convinced that life without conflict is desirable. There's not much conflict in the grave, but while we're alive the only creative choice is the choice of conflict."

Madeleine L'Engle

side-tracked

I have a number of posts that are in the works for this blog, but trouble is I cannot find time to finish them. Hope they don't evaporate, but we shall see.

Got a new part time job, which is going to take more time out of my hide. Also started a new blog in response to decision to hold off on starting RX for Urso for a few months. Want to try something else before I start shelling out for another non generic drug. Healthcare costs are a scandal, and with 5 people to pay for the bills start to add up. Anyway, tune in hereif you find alternative healthcare interesting.

time to stop and take a deep breath...

I just got a somewhat alarmed email from my friend who heard from another friend that my liver is messed up and that I might need a new one. She offered me part of hers if Mike or my dad are not able to supply some, so I thought I better put this little fire out before it gets completely out of hand!

Tim and I went and talked to another gastroenterologist about the results of the biopsy and labwork that point to PBC. This was not the doctor who called me and suggested that I could need a transplant within 10 years, but another more seasoned doctor who works more specifically with biliary problems. Here is what we now know:

a detailed reading of the biopsy results suggest that I am more stage 2 PBC than stage 3. M.D. number one didn't get that when she spoke to me, apparently. Stage 2 means not much scarring or inflammation. That is good! There is also a drug called ursodeoxycholic acid that PBC patients can take that appears to slow down the progress of the disorder. My mom was taking it for about the last 10 years of her life. I talked to the doctor about my mom having the same condition, and about the fact that she died from something completely unrelated. I pointed out that I have two grandmothers who show no signs of being anywhere near death and who both have reached beyond the age of 90. Dr. said that I could well be looking at a similar future: living a long life and dying of something that has nothing to to do with my liver. I will probably still hike to Mayo at some point and get more expert opinions on this matter, but otherwise it's really not on my mind much and I'm not feeling much need to spend time on it.

On the brighter side of things, I just got a part-time job at my kid's school starting in a week, so I will have even less time to devote to worrying about anything besides how to get everyone out the door by 8 a.m. every day. yikes.

results

So much for not discussing biopsy results over the phone!

The gastroenterologist called me last week to give the the news that yes, I have PBC. This was confirmed by the biopsy. Also that I am at stage 2-3, which means between stages 2 and 3 out of 4. 4 is when you get a liver transplant if you can find a liver.

I was surprised that the disease is so far along, but after a few days of thinking about it I'm feeling more at peace. I've gone from crying because I think I won't be around to see my children graduate from college to figuring that some medical advances will happen within the next decade or so that will cure auto immune disorders like this one. Also the doctor gave me info that at my stage I could expect a transplant in 8-10 years, and I'm pretty sure she is wrong about that. Which is why I'm going to find a hepatologist, and am seriously considering going to Mayo. Why not? It's close and it makes sense to be in with the people who know the most about this weirdo disease. And the ones who might possibly figure out a cure.