It’s 4 a.m., and I’m having shortness of breath, esophageal spasms. It’s nothing new, but kinda freakin’ scary! Anyway, I went to YouTube and ran across this…

OMG!! I know exactly how she felt here…I’ve loved her since ‘Complicated.’ I’ve been there! You know, to hell an back…

Brings back some not so great memories…in the beginning. Wow…

I lived next door to a woman, her daughter and her son, Jesse, 2. They were struggling with Lyme disease…you know, before it hit the “airways,” so to speak.

There is nothing worse than being told, ‘it’s all in your head,’ or something stupid like that! You don’t know until you are there, ‘hell on earth.’

I have no more words…right now, anyway.

You go Avril!



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I wrote this back around 2006-07 and it basically covers what I deal with on a daily basis:

I am so tired of being sick and tired. The doctors, surgeries, procedures, ER visits, fighting insurance for medications and being permanently anchored to a pump for tube feedings. The list goes on.

 There are just too many things that go along with being ill, other than the fighting the disease itself, that make it seem unbearable too. For example, I just got off the phone with the pharmacy and I can’t get what I need so I have to call my insurance which I loathe. I’m the one who has to make the phone calls and get everybody on board so I can get my meds. The process sucks.

 Then there’s the doctor’s business side. Medicare will only pay so much for my visits to my therapist (Medicaid won’t cover it). I get this call about payment from the therapist’s office. I can only afford $10 per month and they say they will only go along with $25, or else it goes to collection and the doc’s could dump me! I’m on disability and have lots of other bills to contend with. Can you say “sucks?!”

There are the days when I struggle just to get out of bed and nights when sleep eludes me like those white butterflies my stepdad used to give us a quarter to catch but never could. There are the surgeons who think they are God and the nurses who can be downright bitches. All this and more, unfortunately, is a huge part of just staying alive and dealing with a rare disease or any disease for that matter. It’s not easy dealing, but here I am like many others I know, alive and kicking, even if only by the grace of God.

Everyone handles life’s setbacks in their own way. Some bravely and others not so much. Some become self destructive while others are all about self preservation. There are no right nor wrong ways in dealing with any disease, albeit some ways are more productive than others. Some good, some bad. Some drown themselves in self-pity, even I have been suicidal at times, when the physical and emotional pain seem overwhelming and seemingly unending. All I can do now is to tell my story the very best way that I know how, albeit in parts.

It ain’t easy, but I carry on and I will never surrender!!

(Copyright KLove, 2006)


To understand this, you have to really know me.

It’s been a long and rainy two weeks. This is one of the reasons I moved to the desert southwest and why I would never live in places like Seattle: Too much rain, doom, and gloom.

Yet, here I am in the midst of all the gloom, but here is also where my doctors are. Can’t have it all, as the saying goes. In life, it is all about choices. Choices and change.

I see the oncologist this week….

Enough said.


So, we’re pulling up to the hospital (yeah, yet another appointment), and the cell phone interrupts my attempts of calming myself. Yeah…

Anyway, it was the hospital asking about insurance, yada, yada, yada…as if?!!!

I wasn’t too happy and just yes, yes them. I didn’t have time to play their insidious games right at that moment.

Suffice it to say, my medicaid is in a “sanctuary” state and they were seeing potential problems. I assured them that was being taken care of, which it is. I see social services next week.

Okay, intelligent people will figure this one out all by themselves and for the not so intelligent, go online and just read about how illegals are given everything with NO QUESTIONS ASKED!!

I’ll bet anyone who wasn’t a legal American, without a doubt, did not get any sort of phone call like this. I guarantee it!!

This is what is wrong and so absurd. I’ve been on disability since 1995. I had my stomach removed and have a permanent feeding tube, because of an autoimmune disease. Plus, and this is the kicker, I was diagnosed with leukemia last fall!! And I’m the one they are after?!!

Think about it…enough said.


Spent all day at the hospital, am totally exhausted and what is in the news?! THIS: http://www.breitbart.com/news/judge-blocks-trump-order-on-sanctuary-city-funding/!!!

Okay, I am officially pissed and if I had known this before the hospital, I would’ve said something to that Hispanic family on the elevator who spoke NO ENGLISH! I would have said something like, “Oh hey, you know that summer is on its way so make sure you have plenty of I.C.E.!!!” No holds barred!! I’m taking no prisoners any longer! Enough is enough! This was my comment on BREITBART:

“Okay liberal judge who doesn’t give a crap about us Americans (don’t care what your name is), my Medicare and Medicaid benefits will plummet (I have cancer & a feeding tube), while illegals will continue getting my ‘paid for by my own taxes, withheld from my hard earned paychecks’ care, for free?! 

Want access to our healthcare?! Become LEGAL and pay your Social Security and other taxes!! If I have to go through this ‘system,’ so do YOU!!!

Last year I met a lady from Columbia and her mother was coming to live here LEGALLY!! Guess what?! She had to wait for a year or so, after being here, to get the health care she needed!! She had a feeding tube also.

I have no problem with this. So why is it these illegals get something for nothing over us?!


A good friend of the family, from Berlin, Germany, also here LEGALLY, sent me this note after reading my last post:

I sooooo agree, Karen! I also became American because I love this country and had to pass a test to become American and you are so right, you have the healthcare coming because you paid into it….and still do! What I really find “unfair” is how the pregnant women from Mexico come into the United States to give birth and the newborns are American—you figure! How are you doing? Bill is done with his knee-surgery, it has been 4 weeks now and he is s l o w l y   getting better.