A lot going on

My last post said some of it.  Here is an update: http://beepbeep.livejournal.com/1171657.html .  My family is going through a lot.  And I want to help where I can.

What frustrates me sometimes is how I can't will my body to do more than what it wants to do any more.  I have my birthday Sunday and I was born on "Boss's Day."  Well, my body is the boss.  The rest of me just has to go along.

I'm still here, but...

Do you know how it is when everything hits at once?

I've got some things going on including some legal and some medical.  For me, that is.

But one of my aunts got lymphoma of the brain.  She has RA.  She had surgery/treatment and she was to be recovered from severe dementia right now.  And she isn't.

Another beloved aunt has Parkinson's and is now coping with dementia.  She just broke her hip and responded well to surgery, but for some reason developed a terrible bedsore and possibly pneumonia as well.  I fought pneumonia myself after catching it in the hospital in late February, not as severe as hers of course, but it reminds me of how sometimes hospitals have bugs going around.  Incidentally (!) she is also blind from macular degeneration.

Anyway, I am praying for them.

Another aunt is developmentally disabled and I just received a call from the facility she is in because they needed a relative to give permission for her infected thumb to be treated.

My cousin and his wife had been the contact persons for aunt lymphoma and aunt developmentally disabled. But cousin himself had brain cancer a few years ago and now has leptomenginial carcinomatosis.  Not the greatest diagnosis.  His wife, who is a truly brilliant and strong woman who has been coordinating the responses to our family's current medical madness, has severe MS herself.  How does she do it?  I don't know but I am planning to go back east, where they live, and hope to help her out despite my own challenges.

My sister is being wonderful through this and I hope in some way I am helping her out.

Btw she and I both have SLE.

Our father died when we were very young.  I was six and sis was four.  We know little of his family.  Our mother's family is the one who is being affected by all of the above.  We don't have an endless supply of aunts and uncles and have already lost some.

All of this at once??? Maybe it is just the way of things.  In some way it helps keep me numb so I avoid a lot of searing emotional pain I otherwise would have.


Prayers for everyone.  Prayers for you, who read this.  Sending out love.  It is the only way to live.

Insecticides, No No

I've always been made sicker than the bugs from insecticides.  When I was in a serious flare one year, I was exposed to a formulation error in the pesticide used to spray my parents' house.  My mom and I both became very sensitive to chemicals for a long time...like not being able to walk through pesticide or cleaning product aisles in stores!  I was, in a way, lucky it affected her, or no one would believe me.  Both of us found the chemical smell in the house to be horrific, but I was sick enough to have to go to motels and running up a huge bill, until it became clear that I would not be able to go back home for some time and needed to look for an apartment which my parents had to pay for!  Needless to say, this did my lupus no good.

So headlines about pesticides and autoimmune disease do catch my eye:

Exposure to Insecticides May Up Autoimmune Disease Risk:

http://www.doctorslounge.com/index.php/news/pb/18307

Lupus Prayer Day, Sunday, June 12 · 7:00pm - 10:00pm

This is a Facebook event and I'm hoping this link works: https://www.facebook.com/event.php?eid=120598591357551

However, since it is a prayer day, I doubt Facebook attendance is required!

I'm assuming that any time of day, in your time zone, is fine.

Info:

Contact Jana at crossestocarry@live.com
On this day we are asking you and all your friends to post on your status, "Today I send prayers out to all that suffer from Lupus and for those we know and love that has Lupus, for those which has taken the time in their lives to help "US" to find a cure" Please spread the word among your friends, God hears us always, this day we pray for our mircle.

Resurfacing...again

I've had a weird year so far.  In January I kept having flu-like illnesses with fever over and over again. After these stopped, in February, I started getting weak and shaky. This finally got so bad I had trouble eating without spilling.  It turned out to be severe anemia and I had to have two blood transfusions.  I'm taking iron pills now but do not know what is causing the anemia. It could have something to do with the radiation treatments I had for the cancer.  

When I left the hospital after the anemia treatment, I had a pain in my chest. I ended up having pneumonia and severe bronchitis following the pneumonia for about 2 1/2 months.  Now I've been up and around a very short time and the things that have piled up, like email and paying bills and even laundry, are quite something!


Maybe one of these days I can do something more recreational, like writing in this blog...