"It's never lupus. Thanks a lot House, MD, for your one-man led anti-awareness campaign."

I have to post this from my fav Lupus humorist Carla Ulbrich. She gets me through many funks.

http://lupusandhumor.blogspot.com/2011/08/13-diseases-that-are-difficult-to.html?m=1

13 Diseases that are Difficult to diagnose

Here we go again. Those of us with lupus are on another list of "diseases that are hard to diagnose."

Check it out:
http://www.insurancequotes.org/13-most-difficult-diseases-to-diagnose

The list includes:
- ALS (Lou Gherig's)
- Fibromyalgia
- Lupus
- Crohn's
- Cushing's Disease (which is basically the same effect as being on a lot of prednisone, only your body is creating the cortisol)
- Celiac Disease
- Chronic Fatigue
- Lyme Disease
- Parkinson's
- depression and bipolar disorder
- hypothyroidism
- MS
- Mesothelioma


IMO, this article, while interesting and a good jumping off point for debate, is full of excuses.
Patients are needlessly suffering untreated for years on end not because these diseases are hard to diagnose but because our system and its priorities are seriously messed up.

And now, my 9 *real* reasons these 13 diseases are hard to diagnose:

1- Assumptions. Doctors don't take patients' concerns seriously and assume they are "just depressed," so it takes several visits before they even start looking for an actual physical problem. This is markedly worse when the patient is female. If you aren't bleeding profusely, you're probably imagining your problems and you just want attention (oh yeah the doctor's office is where I go when I want attention. HA!)

2- Ridiculously short time with patients. The cost of overhead (rent, office staff, etc.) is so high and insurance companies put the squeeze so hard on doctors by discounting allowable payouts, that if doctors spend more than 8 minutes with a patient, the doctor is losing money.

3- Priorities are upside-down. Doctors do not realize or believe they are in the business of customer service, and that without patients, they have no medical practice. And yet, when we go into their offices, we are last priority. After the office staff, the insurance company, the pharmacist, the lab techs, the drug reps and the pizza delivery guy have all been taken care of... OK, now we can see you, Mrs. Jones. Oh she left? Well there's more where she came from. She's probably a hypochondriac anyhow.

4- Patriarchal CEO attitude. Most American doctors want to operate in a top-down, giving orders kind of manner, rather than a cooperative partnership with patients, even though the patients may have more knowledge than the doctor on their own condition. Some doctors are threatened by empowered knowledgeable patients and get angry when we go looking for answers in chat groups and on Web MD. I had a doctor fire me as a patient because she didn't like me "challenging her authority" by bringing in articles and asking questions. And she mocked me for trying alternative medicine. Many don't want to listen to us when we ask for specific tests or for them to consider we might have a certain disease. Look I've got all day to check it out and my life depends on it, so let me be involved!

5- Poor listening. American doctors (as a group, with some exceptions, but as a group) have terrible listening skills. How can you figure out what is wrong with me if you won't listen? I had doctors tell me I had bronchitis- and I wasn't coughing! I had no phlegm! I've had bronchitis at least a dozen times, and this was not bronchitis. But they wouldn't listen. Then they gave me antibiotics which made me even sicker.

6- Gadget-happy. American doctors rely so much on technology and fancy tests that they have lost touch with their intuition. They have a reputation among the international community of being test-happy and making every event far more expensive than necessary.

7- For-profit health care. As long as making a buck off people's suffering is the number one priority- and it is for big pharma, insurance companies, and even hospitals- the priorities are going to be screwed up. The kindest doctors in the world can only operate so effectively inside this system. If they want to be free of the demands of these hungry hungry hippos, they have to operate a cash-only, no insurance, no office staff (no overhead) practice. And then they can spend all the time they like with patients, relax, and let it be all about the patient's suffering and how they can ease or end it.

8- It's never lupus. Thanks a lot House, MD, for your one-man led anti-awareness campaign.

9- Reluctance to diagnose. doctors don't *want* to diagnose these diseases. Lately it seems to be harder and harder to get and to hang onto a lupus diagnosis. I can't speak to whether that is the case with MS or ALS or Parkinson's, but from what I'm hearing from other lupus patients, doctors seem to be going out of their way to avoid diagnosing people with lupus, and even trying to un-diagnose people with lupus who have been living with it for years. It used to be simple- if you have 4 of the 11 classic symptoms, you were diagnosed with lupus. Now it seems they want you to have all 11 plus certain blood tests (ANA, anti-DNA, C-reactive protein, etc.). It's like they've run out of room so they had to raise the standards. Like when a university has too many qualified applicants, so they raise the minimum SAT score.

I don't know if the government is pressuring doctors to avoid the lupus diagnosis so they don't have to give disability status, or if the CDC doesn't like the statistical trend of exploding rate of autoimmunity, so instead of making people healthier they tweak the numbers by refusing to diagnose... Call me a conspiracy theorist, but there's something weird and fishy going on here when the same symptoms that would have got you diagnosed 20 years ago are no longer sufficient for definitive diagnosis. I'd really like to know what's going on behind closed doors on this one.


And those, my friends, are my 9 reasons which these 13 (and many other) diseases are supposedly hard to diagnose.

Carla Ulbrich
The Singing Patient

www.thesingingpatient.com

Author of "How Can You NOT Laugh at a Time Like This?"
get the book! http://tinyurl.com/348hroc

Renovation Saga Begins

I’ve been running around in organized madness trying to accomplish as many projects as possible before my classes begin.  So, I haven’t written any journals or stories at all in days.  I feel guilty about that…so weird.  Anyway, my mind keeps running through the to-do and done lists and I’ve decided to cheat a bit and make my lists into blog entries.  Then I can look back on this time and remember the chaos while I appreciate the outcome of the labor.  I am dividing the lists/posts into areas for my mental organization.  Beware of scattered ideas and thoughts during the next several posts.  Also, feel free to offer suggestions & ideas.

First I want to explain that there is so much to do with our house.  We, my mother and me, bought the house from my grandparents as they were looking into going into care facilities at the time.  We knew my mom would stay in this home after she retired.  Also, my son wanted to continue to go to the neighborhood’s high school and stay with his 8^th grade friends.  The home is in a small incorporated town outside of Memphis, so it allows for more of a community mindset and a little more peace than the “big city” offers.  All in all, the purchase made sense. 

My husband and I have a home further out in the country that is a lot more rural – no street lights, neighbors are a ways down the road, the area just got its only McDonald’s 10 years ago. It gorgeously sits on a hill and is lushly surrounded by trees that surround the house and acreage like a cloak.  The greenery cloak opens just a bit and if you catch that slight opening you will find a tree-lined gravel path that leads up the hill to an opening of gorgeous green yard, a cute basic white house, a dirt worn basketball pad on the side and beyond there the swimming pool I saved for and love.  We have spent many wonderful weekends there.

The plan was always to move out there permanently after our son finished high school and left for college.  Funny, plans get made and plans don’t always pan out. 

Our son didn’t leave for college.  He received a scholarship here and decided to stay and take it.  He even decided to stay at home!  What 18 year old does that, I wondered?  I was so ready to get away at his age.  And honestly, at my age now, I was ready for him to get away.  Apparently, though, many more kids are staying home and even going to community colleges first to save on expenses these days.  My son is very frugal.  Seriously frugal.  Unreal frugal. It still blows my mind he didn’t run out the door the first chance he got.  He has since told me that his decision also stemmed from concern for his grandmother.  She retired as her mobility was getting more difficult and she has since given up driving.  His frugality and sense of responsibility awes me.  His hero was my grandfather and he has modeled himself after him, for sure.  That’s a story for another post, another day.

Anyway, it turns out that I like country living in the day time, but not so much at night, alone.  It totally creeps me out.  I tried and I tried, but I cannot do it.  Our house in the country is up for sale as I speak and our marriage has a foreclosed sign, as well. Back in May I made the decision to stay put with Mom in town and so I have jumped full force in to renovation. 

I have a ton of ideas and not so much work force and time.  I guess that's how these things usually go.  There is so much to be done with this house because the last 10 years have been difficult for my mother and for me.  I think I need to journal the outline of the past ten years to get it out of my brain and on paper, so to speak.

The new century started with my grandparents in their 90s and slipping into dementia and Alzheimers.  My grandfather was first and developed Alzheimers.  It was hard as he was the father figure in my life.  He was my son's best friend.  He was the one who always had the the answers, fixed everything and added stability to the lives of the 4 crazy women in his life-his 2 daughters, his wife and me, his grandaughter.  Off and on for the 30 years prior we had all lived under the same roof at various times. 

He passed and then my grandmother started having bouts of heart failure.  This lead to her residing in a care facility because she went in as a rehab patient and never left.  My aunt then started having blood pressure problems, mini strokes and cardiac issues.  This past January she had surgery  from which she never regained consciousness and I had to make the decision to let her go to join my grandparents in Heaven.  My mother had handled the day to day management and care of my grandfather and his passing.  We shared the tasks with my grandmother.  Mom was unable to help with Illa except what she could do by phone.  I'm really glad at this point as I don't think she could have handled my aunt's last few days.  Ten or fifteen years ago, my mom could do anything.  She was still Super Woman.  These days I have to put on the Super Woman cape and step up.

So, back to the house...it was my grandparents and while we have lived here for 8 years, my mother has not been willing to change anything.  Now that so many things are falling into disrepair, she is open to changes.  I also really believe it is because she feels some freedom finally.  As long as my aunt was alive I think my mom felt a responsibilty to keep up "my grandparents' house" rather than live in our house. 

I've started with small changes....now I am discussing bigger changes...next I will make big changes.  Bit by bit my mother is coming round, but bit by bit I find myself opening back up to me and what I want, what I like.  I am determined that lifting the depressive fog of the last several years for my mother begins with turning "my grandparents' house"  into our home finally.  I am on a mission of light and cheer and am no longer content to just be a superintendent of the past.