Wednesday, November 8, 2017

Breaking News. . . The AARDA Is Endorsing My Book!

I don't even know how to tell you just how excited I am about gaining an endorsement for MY BOOK from the American Autoimmune Related Disease Association.

Just in case you have not heard about the AARDA, here is their mission statement:

 Founded in 1991, the American Autoimmune Related Diseases Association (AARDA) is dedicated to the eradication of autoimmune diseases and the alleviation of suffering and the socioeconomic impact of autoimmunity through fostering and facilitating collaboration in the areas of education, public awareness, research, and patient services in an effective, ethical and efficient manner. The AARDA is the only national nonprofit health agency dedicated to bringing a national focus to autoimmunity. The need to bring a national focus to autoimmunity as the common factor in all autoimmune diseases is vital in order to bring a collaborative effort to research, funding, early detection, and eventually, prevention and cure for all autoimmune diseases.

The AARDA is listed as a four-star charity on Charity Navigator, earning over a 98 percent score out of 100.


Not only do I feel validated, I am incredibly happy that others can learn through my experiences.

Need to do my happy dance now!


Friday, October 27, 2017

I'm Scared

I'm here to tell you that - just when you think it couldn't get any worse - it will.

When you think that having two daughters with lupus and a third with arthritis is bad enough.. .

When you think that having Sjogren's, lupus, rheumatoid arthritis, and peripheral neuropathy yourself is about all you can take. . .

When you and your daughter have antiphospholipid antibody syndrome. . .

When you have worked through horrible bouts of depression and anxiety . . .

When you actually lived through septic shock brought on by an immunosuppressant?

When (thanks to Sjogren's) you have 13 cavities in the last three years?  When caries are found under three crowns which have had root canals and you end up having one of these teeth pulled?  When there is no option for a dental implant because you are on an immunosuppressant?

When you have been tested for every disease known to humankind? 


 DO YOU?????

One daughter gets weird rashes which are biopsied and then diagnosed as vasculitis.

Another daughter develops a problem with emotional issues herself.

And you?  A three-week bout of abdominal pain and the "D" word finally drive you to seek treatment and an abdominal CAT scan shows nothing wrong with your gastrointestinal organs but finds, instead, that there is something terribly wrong with your lungs?

I don't quite know if it's the start of interstitial lung disease connected with Sjogren's and lupus, or whether it is the beginning of Scleroderma (a disease we thought was ruled out by recent pulmonary function testing and an echocardiogram.)  And I know I shouldn't panic until I let the pulmonologist do his thing, but right now I'm scared.

That's right.

For the first time since I stepped on to this horror ride, I have to admit that I'm really scared.

Monday, October 16, 2017

I Wore Slippers to a Funeral

As you can see, the title of this post is "I Wore Slippers to a Funeral."

That's because I did.  I wore slippers to a funeral.  And I am very seriously contemplating wearing them to the next wedding I attend.  I've also worn them to church, bible study, to dinner, a lecture, the grocery store, the drug store, the dentist, a tea.

Now this is not the time to make fun of me for not having a "life", for we all know by this time I go nowhere of any significance.  But allow me state for the record that I also intend to wear them to a wedding shower, comedy show, and a ZZTopp concert on Halloween.

Talk about a Sharp Dressed Man!  (Well, woman, person, human. . . )

I told you a few weeks ago that I was looking forward to receiving my AllBird slippers and they have changed my life.

Move over UGGs.   There's a new ewe in town!

Monday, October 9, 2017


All of this.

Every day

All day and all night

To battle dry eyes.

And yet still I continue to rip my corneas each morning.


Wednesday, October 4, 2017


While glued to the television watching the coverage of yet-more senseless killings this week, I've been ruminating over something.  And it has to do with survivors.

We can all understand why they would grapple with a sense of guilt.  "Why did I get to live and tell my tale when others were cut down in their prime?  Did I do enough to help my fellow man?  Why them and not me?"

And I watch the news anchors respond with the reply,  "Because you were meant to go on and do something special with your life."

But I'm here to tell you that they've got it all wrong.  You didn't get spared because you were meant to do something special with your life.   You can do something special because you were spared.  Because you've seen horror, you can now bring beauty into this world.  Because you feel weak, you can now be your strongest.  Because you've seen the worst, you can work for the best.

Okay, I admit I'm not God, but I'm pretty sure he did not pre-ordain this violence.  This was senseless and random.  And only those who face adversity truly know what it is like to be strong.

You're a survivor.

I'm a survivor. 

Yes, I may be sick.  But I try to be the best darn sick person the Good Lord ever put upon this earth.

Wednesday, September 27, 2017

Let's Talk Feet

I love talking feet because I have so much to say about mine.

Yes, we all know they hurt and burn and that I simply cannot find any shoes that feel good on my feet aside from my UGG slippers, so I won't bore you with THAT information.  Let's talk instead about what makes them feel good.  And, believe it or not, it has nothing to do with piggies going to market, or staying home, or eating roast beet.  Nada.

 Turns out it has to do with a company named Allbirds who then turn around and then make it about sheep.

And thank the good Lord that they do; for I am in love with those sheep and their soft comfy wool which lines the inside of my UGGS and who now contribute their beautiful 100% merino wool in my soon-to-be Allbirds which I just ordered today..

 It's like my feet have now joined an on-line dating site and will be having their first meet-up in five to seven business days.

I'm prepared to fall in love at first touch.
Will let you know when the nuptials happen!

Monday, September 25, 2017

An Addendum

So if you were to read my post on my other blog titled, A Fall of Olympic Proportions, you might just think it was funny story about a fall.

I'm here to tell you all of the reasons it was not;  the things that that 100-voice chorus did not know about me and my circumstances as they watched that fall.

1) No one knew how I agonized over going to that event in the first place.  How I despaired about being with 1250 other attendees.  How I worried about having to stand too long during a cocktail hour.  And so no one knew that my plan was to arrive late and so that is how I came to notice that the valet parking was a nightmare; for certainly I could not walk the long distance from the self-parking area.

2)  Likewise, no one knew how I agonized over which shoes I was going to wear; for we all know that the ONLY footwear that feels good on my feet are my UGG boots and slippers and I certainly couldn't wear either of those to a fancy event.  And so I chose a sensible shoe with a bit of a chunky heel and - most importantly - extra padding on the ball of my feet.

3) And as the speeches were wrapping up and the time came close to retrieve the car from the valet service, no one knows how I worried that I was going to have to stand in a long and tiring line waiting for an overwhelmed valet staff to bring my car.  And so I begged my husband to hustle to the front door so he could be first in line - which indeed he was.

4) But no one noticed that as I joined him on that second step of that grand entrance, waiting for our car, my right foot was already halfway off of that step and I didn't sense it.  Hence, the momentum of the weight shift as I turned around to say something to a friend and turned around again, was more than my neuropathic feet and legs could handle and I fell forward out of the blue.

5) No one but my husband knows how upset I became on the ride home as he tried to blame my fall on poorly marked steps at a brand new venue.  But I knew what the cause of my fall was and it somehow upset me that it appeared that he - like so many others - wanted to minimize or explain away my ailments.

Nobody knows.

I tell you, nobody knows.

And so I told him that I didn't want to hear a million excuses about the size or construction of those steps.  I wanted - instead - for him, to say "Gee, Liz, I'm sorry that your freakin' disease has caused you to lose all feeling in your feet and so you couldn't gauge where you were and consequently fell on your ass in front of about 100 people."

Yes, I yearned for him to say, "I'm sorry that your feet made you look like an ass."

Then, and only then, I would know someone else knew.