Friday, March 26, 2010

Between my current flare of lupus and the chaos surrounding the brand spanking new US health care reform bill...

I'm ready to drop.

All I could put together tonight is here. Forgive me!

I'm only awake now thanks to prednisone-caused insomnia...doesn't mean I'm coherent...

Friday, March 12, 2010

Alliance For Lupus Research Video: Faces Of Lupus II

Dear family and friends,

I've been asked to pass on this latest video about lupus from the Alliance For Lupus Research ( .)

Lupus is still in desperate need of publicity in order to raise awareness of the disease, which would:

* encourage early diagnosis which is associated with better disease outcomes

* make life easier for those of us who already have the disease (and to help us be better understood by others whom we encounter in life)

* raise badly needed funds for research.

I know there are people with lupus who will want to share this video with others.  

But if you do not have lupus, and if you would still take a moment to watch this video and pass it on to anyplace people might view it, or to anyone whom you think would benefit from watching it...then you are doing something to help a patient population which doesn't, in general, receive a great deal of help.  

Thank you so much for this.

Love and peace
diagnosed with lupus in 1985

Thursday, March 11, 2010

LFA's Lupus Advocacy Day March 16, 2010

The Lupus Foundation of America is sponsoring an Advocacy Day on March 16.

The website for the event is HERE and lets you know what to do to get involved.

In my opinion, the website makes a strong case for why we should all be participating--along with those who care about us who have lupus!
Quoted from the site:

If you can’t join us on Capitol Hill for LFA’s Advocacy Day, there are still lots of ways you can band together for lupus and make your voice heard.

Tell Congress We Need Increased Federal Funding to Bridge the Gaps in Lupus Research, Awareness, and Education. Here's Why.

  • It has been 51 years since the U.S. Food and Drug Administration approved a drug for lupus. Current therapies have unacceptable side effects that can be worse than the disease.
  • Research has consistently shown that 80 percent of young women say they know little or nothing about lupus.
  • According to surveys of people with lupus they experience symptoms for four years and visit three or more doctors before receiving an accurate diagnosis of lupus. Early diagnosis is critical to preventing the life-threatening consequences of the disease."

Lupus Walk In Los Angeles September 2010

I have very mixed feelings about "lupus walk" fundraisers because I see patients who shouldn't be in the sun, who are very weak, or who are otherwise not suited to participate, force themselves to do something which harms them just because it is one of the few opportunities to raise money for this underfunded cause.

But if people who can safely walk would do so (or maybe someone would do so FOR us?) then the walks do certainly help raise awareness of lupus as well as badly needed funds.


Walk For Lupus Now
sponsored by the Lupus Foundation of America
Saturday, September 25, 2010
Exposition Park
details on website HERE

Monday, March 8, 2010

Remember "do not stop taking corticosteroids abruptly?

I always wondered what would happen in a natural disaster, with so many of us who are on medications which cannot be stopped abruptly on rigid no-margin-for-extra renewal schedules imposed upon us by our insurance coverage.  How would we get the medicines we need in a hurry?  I have more than one which cannot be stopped on a dime, so I assume I would get very sick and/or die.  Admittedly, this bothers me a good deal.

Recently I haven't been getting my own meds together.  I have a lot of them and post-cancer-surgery I wasn't up to counting them all out.

A few days ago I started to feel quite sick.  I wondered why it seemed like arthritis in every joint was flaring up badly and also I had so much pain with breathing.  My asthma flared up also, and I was wheezing, which could just be seasonal.  But I was also very tired.  I was so confused that I was worried I was having some long-term dementia from the anesthesia used on me on Jan 22 for surgery.

Yesterday I woke up to a rush-to-the-bathroom for vomiting.  I even vomited after breakfast.  I got sicker the rest of the day and thought I either had vomited all of my meds and thus skipped doses, or were coming down with a virus that somehow caused intolerable joint pain as one of its symptoms, or if I were having a very sudden flare of lupus with an unknown cause.

I got even sicker throughout the evening.  Symptoms:  severe pain in many joints, severe pain with breathing, headache, a feeling of being totally exhausted, nausea, chills, weakness, dizziness, loss of appetite.  I could only pick at a truly amazing homemade meal.  I shivered through the Oscars, except when I was having a major hot flash, which have been showing up since my ovaries were removed.  I was impaired everywhere but my hands were almost useless and I couldn't type answers to my email, let alone do a blog entry.

I woke up this morning far worse.  I thought my right hand was injured since it was so painful and swollen.  My left hand was a bit better but not much better.  There are joints in the body from head to toe and I knew where they all were since they were all screaming at me.  I've felt this way before and I remembered one particular stretch of time before my diagnosis of rheumatoid arthritis, later changed to lupus.

Since I was so tired I took a nap after a small breakfast.  I eat when I'm not hungry when I have to take meds which have to be taken with food.

When I napped I had a dream that I had been given no prednisone and that was why I was feeling so sick.  It was an odd thing to dream of so when I woke up I checked where my meds were being kept just for the heck of it.  This was no easy feat with almost useless hands, but when I got through all the bottles:  no prednisone.

I called the pharmacy to renew and sent my poor visiting mom out in the cold to get the med (I am not yet cleared to drive post-surgery.)  When the med arrived there were not many pills and those only 5 mg.  So I took 20.  I also emailed my rheumatologist.  His office then called in a prescription for more pills and so I was able to take 10 more mg.

I began to feel a lot better.  Mind you, I still feel like crap, and have a long list of miserable symptoms.  My hands still hurt (although no longer useless), as do other places.   But I am not in what truly seemed like some kind of mortal agony before death.

Of course, this being me on prednisone, I immediately experienced the severe emotional lability which many of my fellow lupies also are unlucky enough to have as a side effect with steroids.  Managed to have upsetting communications with two different people as a result.  Thank goodness I don't work at the UN.  Explains why I don't have a lot of friends left, too :*(

Mom and Don went out tonight to get the new prednisone prescription.  The pharmacy gave Don a bag of pills and then slammed their shutter down in his face announcing their closure.  When they got back home, I checked the bag.  Several medications I had renewed last week.  But no prednisone.

Hope my pharmacy enjoys phone calls from moody hyper borderline-hysterical bitches on prednisone, at 8 am when they open.  I am being taken to LA tomorrow for a postop so they had better solve this fast.

Tonight mom noticed that where I had pulled off some tape holding gauze in place over stitches put in at my primary care doc's last Thursday (where he removed an extremely painful boil that would not go away for months), there are a lot of small and very dark purple spots. Special.

I am wired from the steroids, but still sooooo tired.

I don't have words to describe how awful my recent days have been and how scary this whole drama still is.  Kids, do not try this at home.  Don't mess with prednisone.

About Me

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I've travelled the distance from an Ivy League college to decades of enforced poverty--because I've needed to qualify for government health care in the U.S., since being diagnosed with lupus at the age of 23. I have a personal blog at that I've had so long I'm probably stuck with :) My other blogs are here on blogger...