A facebook page and standing up for your children

A facebook friend of mine shared the following ‘fan’ page with a short post about how her child was almost ‘lost’ due to similar circumstances – https://www.facebook.com/JusticeForLucie

Yes, this story is heartbreaking. I couldnt even imagine losing a child, let alone in this manner.

However, there are some things I need people to be aware of if your child is in need of emergency care and is being ignored.

If my child goes to the ER, its usually a true emergency.

My daughter Amanda had alot of asthma related issues growing up. We spent so much time in the pediatric emergency room that the hospital staff knew us by name.

Instead of allowing physician or hospital staff ignore my child, and instead of allowing nurses or other staff chatter amongst themselves about unprofessional topics, go out there and DEMAND that they take care of your child. ESPECIALLY IF THEY ARE HAVING BREATHING ISSUES!

Do not take any of their crap. Dont let them attempt to tell you that some specialist is ‘on their way’. Make sure that someone is taking care of your child. NOW. No, not when they are done with their conversation….NOW.

You see Im what you call a loudmouth. Im not going to allow some ‘stranger’ to tell me some ridiculous nonsense when it comes to the health of my child.

Your child is your child. They cant be replaced. Your child is your priority. The medical issue that had you bring them into the emergency room, needs attending to.

Make sure the doctors and staff take care of your child as if she/he is their priority. And as much money that its gonna cost you for this emergency room visit, get your moneys worth and make them take care of your child!

 

Why I am happy the ACA was upheld

Wow, its been over a month since Ive blogged. Ive been really busy, but I will save THAT post for another time…..Today I want to talk about something else…..The SCOTUS and the ACA and how it was upheld this morning.

I am not going to act like this entire bill is wonderful….because there are parts I dont like. It IS a start.

I think I have to say that when the word got out that the Supreme Court upheld the ACA I felt like Erin did: http://queenofspainblog.com/2012/06/28/tears-and-thanks-to-the-supreme-court-for-the-affordable-care-act-ruling/

Erin is like me in many ways. We both have LUPUS. It is a chronic debilitating disease that can attack any organ in your body. Without treatment, many of us would certainly be worse off that what we are.

Today, I have seen posts online that have truly REPULSED me. On days like this, when posts claim that people who are happy about this are lazy, wont work, want things handed to them…..etc etc I get seriously sick to my stomach.

Ive  worked since I was 15. I have paid my share into whatever system should cover people when we need extra help.

If you are truly against paying for other peoples healthcare, maybe you should stop paying taxes. Maybe you should stop paying insurance premiums. And, perhaps maybe you should stop going to hospitals. Because you are paying for other people who dont pay into the system when you pay taxes, pay your insurance premiums and pay your hospital bills.

You wanna know why your tylenol costs more than 5 cents? Well, its because most poor people dont pay their medical bills. They pass the costs of that along to those who DO pay their bills.

So…..shut the hell up about what you pay for and what you dont want to pay for.

I hate to delete half my facebook friends because they post ridiculousness all over the place about how everyone is so entitled….blah blah blah.

You ALL look like selfish jerks.

Yes. ALL of you.

Deal with going to work EVERY DAY when just getting out of bed and getting a shower feels like death.

Deal with doing EVERYTHING right and then BAM being diagnosed with a debilitating disease and going absolutely broke because of that illness AND your then husband walking out on you and your kids. But you still go to work.

Deal with losing EVERYTHING because you paid all your medical bills off and then you get SLAMMED with another flare of said illness.

Try getting insurance when you have an illness like lupus. And IF you can get a policy, see how much that costs.

Try applying for SSI/Disability and waiting for a decision and then being turned down more than once. See how much paperwork is involved in that process.

 

For those people who claim some of us dont need the specialists we do…..yall can just delete yourselves.

Try this. Go to google. Look up how much some of the treatments I HAVE to get cost.

• * Albumin infusions
• * Remicade infusions
• * Benlysta infusions.

And in some cases, they arent even covered at all. It is only thru the tremendous work of social workers at the “Big Pharma” companies that I get these treatments at no cost to me. Guess what? Someone is paying for them. And no, I dont feel ONE BIT bad that someone somewhere IS.

In one case, one infusion treatment costs a MINIMUM of $3700.

That doesnt even include the medications Ive been put on…..or the medications I could be put on.

Im not asking for a pity party. I dont want your sympathy.

I dont even want your money….that obviously is way more important that helping a single mother stay healthy so she can remain a PRODUCTIVE member of society.

Im guessing from some of your posts, you would rather us unhealthy people be placed on some island somewhere to die or something….I dunno.

But heres the rub: If we are not healthy, we cannot work. If we cant work, we lose our homes, our vehicles, our children. Maybe some of us will have no choice but to go on welfare…..which Im guessing is worse than having some of your precious money help us out medically.

I guess losing everything due to an illness is all my fault tho. Cuz ya know…..screw us.

And for all the politicians out there boohooing and getting your panties in a bunch about this……guess what? I wont be voting for you. Especially when your posting about how youre gonna repeal this if elected. I WILL be working for your opposition.

 

 

More lessons learned

Consider me one of those people who have to learn things the VERY hard way. Its official. I am a doofus. Yea, that might sound a little harsh….but its the truth. I spent the majority of my life thinking I could do what I wanted, not listening to the doctors, and be completely fine.

Sure, it didnt start out like that….When I was first diagnosed with lupus in 95, I listened to what they told me to do. I changed my diet, changed my lifestyle, etc. But as I got better and went into remission, I fell back on those old habits.

Since the initial remission, Ive had several additional flares and subsequent remissions. And, while I would like to say that I changed what I had to each time, that would not be the truth.

I actually went a full homeopathic route until this last flare. I am VERY VERY VERY lucky to not have killed myself not getting the correct treatment. And to be honest, I could have actually lost my kidney.

I am still kicking myself for that stupidity.

Ive been in this most recent flare since November. Yes, November.

My current treatment has been at a standstill due to other health issues that have arisen….which, I could just kick myself for, since that is also connected with my unwillingness to do what Im supposed to be doing.

Since my last post, Ive been on rescue inhalers, inhaled steroids, nasal steroids, oral steroids, and antibiotics.

I am not getting better.

I still do not have my voice.

I still have issues catching my breath doing the most trivial of tasks

With one exception, this entire experience is MY FAULT.

And now, Im faced with the fact that my voice will never recover. I may get some vocal range back with intense speech/vocal therapy, but I will never have MY voice again.

My lungs may never recover. With some of the changes Im making NOW, I might get SOME of my lung function back…..SOME.

I am extremely mad at myself because I could have prevented these issues by making REAL lifestyle changes.

And, in case you were wondering just what it is Im going thru…..the diagnoses is two fold. My lupus has attacked my pulmonary system and due to the other factors mentioned above, I now am also diagnosed with emphysema and COPD.

This effectively means that I have NO choice now but to make lifestyle changes.

This is not the way it should have went down. If you are reading this and not watching what you eat and are a smoker (even an occasional smoker), MAKE THE CHANGES NOW!  Do NOT wait til you get THIS sick.

 

A few words on being a slut and prostitute

In case youve been living under a rock the past couple weeks, youve no doubt heard about Rush Limbaugh and Sandra Fluke.

In case you havent, heres the jist….Sandra Fluke testified that women need contraceptives (and not just for birth control purposes either). Rush Limbaugh went on a 3 day tirade of calling her a slut and prostitute……as well as being extremely mis-educated about who in fact IS paying for these services/medications AND being mis-educated about how birth controls pills actually work.

After a social media boycott several companies pulled their ads from his program and two stations pulled his show entirely.

There is no doubt that people do not understand the debate regarding womens health and the inclusion of reproductive services and medications. If women controlled this conversation rather than men, most of the mis-information would not occur so often. Anytime this conversation occurs on social media, its videos and articles written from a male perspective.

Why are we allowing the men to control this conversation?

I commend Sandra Fluke for speaking out on behalf of women, as well as specifically mentioning the medical reasons for the necessity of these medications.

And, as much as it surprises me that anyone would call this woman these names, I am not surprised.

Let me tell you about many conversations Ive had regarding the utilization of birth control pills to regulate cycles or the use of birth control pills to prevents cysts or endometriosis (both of which were reasons I used them) with hard-line Catholics.

During the time that the Obama administration announced the mandate on reproductive services, many discussions followed (both on my on page, as well as on others pages). The Catholics I spoke to usually said, ‘if there is a true medical reason for using these medications, you can speak to a priest and get -permission-‘

Yea, thats all fine and dandy. Let me talk to a priest (a male) with ZERO medical training about my female issues. But even if you were to seriously talk to a priest and get his -permission- what about the cost? If you work at a Catholic church, this insurance plan still wouldnt cover this medication.

Sure, you could tell that person to look for a job elsewhere…..but why should that woman suffer with the pain that occurs from this medical condition when her insurance should provide this medication?

The taxpayer doesnt pay for this womans insurance policy. All of those who have the same insurance company pay.

The lame outrage about taxpayers being stuck with the bill just doesnt ring true in this argument. Educate yourself about how insurance works.

Also……if you are a taxpayer claiming outrage in this argument, where are you in your outrage about where else your taxpayer money goes? Hey religious people-do you realize you pay for wars with that money? Isnt that way higher on your moral scale than women and their health rights?

I am literally sick over this stupidity.

Using birth control doesnt make you a slut. Using birth control doesnt make you a prostitute. Im sure those in a monogamous long term relationship or married couples using birth control can attest to that.

And ya know whats crazy? It isnt just Rush Limbaugh spewing this nonsense.

Besides that yahoo Rick Santorum, who quite honestly looks more idiotic the more he speaks, I heard from two of my (again) hard-line Catholic friends on facebook. Both of whom claim that women who use birth control are ‘loose’. Even after attempting to set them straight, they still maintain this line of thinking.

If I thought birth control pills made one loose, I would have never drove my then 16 year old daughter to a clinic to get em.

I am personally FOR the use of birth control. For any of the reasons given. Preventing unplanned pregnancies included.

That does not make me

• a slut.
• Or a prostitute.
• Or even loose.

That equally does not make me

• a liberal.
• A feminazi.
• Or a baby killer.

Considering just how many women use birth control in our country, I wonder why these men even feel comfortable using these words.

 

Has Susan G Komen lost sight of the cause?

Im sure by now youve heard that Susan G Komen has cut funding to Planned Parenthood. (http://jezebel.com/5881057/susan-g-komen-foundation-bows-to-pro+life-bullying-stops-contributing-to-planned-parenthood)

And I saw this article posted today that states that this decision is permanent. (http://www.lifenews.com/2012/02/01/komen-decision-to-yank-planned-parenthood-funding-is-permanent/)

 

In case youve been living in a cave, Susan G. Komen for the Cure is a leading fundraiser for breast cancer research and awareness. The grant Planned Parenthood received from Komen each year was responsible for 170,000 breast cancer screenings and 6,400 mammogram referrals each year. None of the money received from Susan G Komen went to any abortion services.

But those facts obviously dont matter.

It seems as though theyve hired Karen Handel, who ran for governor of Georgia in 2010 and lost. Shes been Komen’s senior vice president for public policy since April 2011.

Why is this important?

Well, on July 15,  2010, she put out this blog post (http://web.archive.org/web/20100921093610/http:/blog.karenhandel.com/2010/07/karen-handel-on-life-and-planned-parenthood/) Thank the internet archives, since the actual blog doesnt exist any longer.

And now…..Susan G Komen has this new ‘rule’ that states their organization bars them from donating to other organizations currently under investigation.

In fact, the ‘investigation’ being brought on by Republican Congressman, is so laughable, that its NOT funny.

Planned Parenthood cant use the money it gets from the federal government for abortions. (http://www.hhs.gov/opa/title-x-family-planning/) And the Hyde Amendment restricts Medicaid funding for abortions (meaning it only allows them in cases of rape, incest and for the life of the mother). (http://www.guttmacher.org/statecenter/spibs/spib_SFAM.pdf) Not only that, but the federal budget deal now bans Washington, D.C., from paying for abortions as well. (Source: The Washington Post [cannot locate link])

FACTS YALL

There is such misinformation regarding Planned Parenthood out in the ‘wild’. And  Arizona Sen. Jon Kyl claimed last spring on the Senate floor that “well over 90 percent of what Planned Parenthood does” is provide abortion services.

Sorry to tell yall, but that figure is totally inaccurate. Heres a pie-chart that represents the services Planned Parenthood provides:

For those of you who claim that Planned Parenthood is an (and Ill quote) ‘abortion mill’, you couldnt be further from the truth.

They also provide:

• anemia testing
• cholesterol screening
• diabetes screening
• physical exams, including for employment and sports
• flu vaccine
• help with quitting smoking
• high blood pressure screening
• tetanus vaccines
• thyroid screening

Services offered to men include:

• checkups for reproductive or sexual health problems
• colon cancer screening
• erectile dysfunction services, including education, exams, treatment, and referral
• jock itch exam and treatment
• male infertility screening and referral
• premature ejaculation services, including education, exams, treatment, and referral
• routine physical exams
• testicular cancer screenings
• prostate cancer screenings
• urinary tract infection testing and treatment
• vasectomy

Most Health Departments dont even cover some of these services, let alone for little to no cost to the patients.

I go from being incredibly sad that so many people are blind regarding Planned Parenthood to incredibly mad that their heads are in the sand. How many low income people will not find cancers early enough now because of this funding being cut? How many will die?

Quite honestly, some of the same people berating Planned Parenthood, are the same ones who probably havent had to find doctors who didnt need hundreds of dollars at the time of service, in order to receive their healthcare. Ya know…..those people with that fancy health insurance. Funny how the people making the decisions never have to deal with those decisions, huh?

 

ACTION NECESSARY

Should you wish to donate your money to your local Planned Parenthood, go here (https://secure.ppaction.org/site/SPageServer?pagename=pp_ppol_Directed_DonationFormOneTimeGift)

Should you wish to donate your money elsewhere, here are a few suggestions

• Black Womens Health Imperative http://www.blackwomenshealth.org/
• The Breast Cancer Research Foundation http://www.bcrfcure.org/
• Breast Cancer Charities http://www.thebreastcancercharities.org/
• Cancer Care http://www.cancercare.org/
• Cancer Research Insititute http://www.cancerresearch.org/

 

 

Womens Health Care gets a win – and so does the White House

Today is eve prior to the March for Life Rally held every year down in Washington DC. Thousands will march around the mall and to the Supreme Court building to protest the landmark Roe V Wade decision made 39 years ago.

I didnt plan on blogging about this topic. And most people know how I feel about the topic of abortion. However, there are some people who are pro-life in every sense of the word who are up in arms regarding a recent White House health care decision.

I point to this article for clarification: http://www.washingtonpost.com/blogs/ezra-klein/post/white-house-stands-firm-in-birth-control-battle/2012/01/20/gIQAtZu6DQ_blog.html

The most important sentence in this article is this and I quote: ‘The rule upholds a requirement for nearly all employers to offer birth control without a co-pay. What’s more, the White House won’t expand exemptions for faith-based hospitals and universities, as religious groups had urged.’

As well as this video: 

This is a HUGE win for women in the US, as well as the White House.

But you say, what does this have to do with the pro-life movement? Well, a large majority of this movement do not condone the use of birth control. One of my friends shared this article this morning: http://www.catholic-convert.com/2012/01/21/obama-gives-catholics-one-year-to-learn-to-violate-their-consciences/comment-page-1/#comment-313666

Im sorry, but no. You are not learning how to violate your consciences. You will learn that the majority of women need preventative health care and if  you insure your workers, you must provide ALL the necessary healthcare to them. You cannot continue to pick and choose thru and cross out the parts of what you dont like.

The hypocrisy of this situation is that none of the same people freaking out about this, freaked out when men were able to get that little blue pill.  Why the double standard? I dont know.

All I DO know is that women, no matter where they stand will remember that it took THIS administration to do what no other has done. And thats to make womens reproductive rights MANDATORY for every company that gives their employees health care.

 

 

Brain Fog – Yes, It IS real

 

 

Im one of those people who LOVES to make lists. I make lists for EVERYTHING. Lists are just part of my personality. Or so I thought.

I suffer from what us ‘spoonies’ call Brain Fog…..and yes, it IS real.

Read:  http://thelupusmagazine.blogspot.com/2010/08/kim-nault-lupus-brain-fog-lupus.html

Ive always been an over-achiever. That was one of the first reasons I started making lists. Now, I make lists so I dont forget to do things on a daily basis. I have a list for stuff to do at home…..and another for stuff I do at work. If I dont make the list, it doesnt get done.

People used to say that I had ‘too much on my plate’ and that I should do less. But that really wasnt the issue.

Those who are close to me used to make fun of me because I literally have to check things off as I complete them, or I would forget that I did them.

To cover the embarrassment, I would joke that I suffered from early on-set dementia. (I know that aint something to joke about now.) I was even too embarrassed to discuss this with my rheumatologist. (Yea, I know, its his job to help me.)

You see, when someone tells me that Ive forgotten to do something, my first reaction is to -quite honestly- deny, deny, deny. That doesnt help things either. And Im not one to shirk my responsibilities.

My system of making lists has been my go-to, but lately, I walk into rooms forgetting why I went there in the first place. Ive been forgetting my passwords to log-in to sites online and it is now making me angry.

I try to make jokes about my forgetfulness, but it gets harder and harder to do, as I struggle to attempt to remember things like:  Did I turn out the lights? Did I rinse the coffee-maker? Ive even been halfway to work when I realize that I forgot my work keys. And last week, I was so preoccupied that I actually forgot to get gas and ran out on my way home.

Most of the time my brain fog centers around non-trivial things, but this type of stuff frustrates me so much. It has gotten to the point where I have to see if I can get help.

 

 

Anger, stress, denial = lupus flare :(

As some of my readers know, I suffer from lupus and fibromyalgia. I was officially diagnosed in 1995 after several mis-diagnoses, including being diagnosed with juvenile arthritis.

Ive spent the last 16 years educating myself, changing habits that encourage symptoms, and educating others. Ive also spent the last 16 years playing flare / remission / flare / remission. Ive been pretty ‘lucky’, in that Ive been able to go several years at a time in remission before hitting a flare up period.

Last week I read this article ( http://www.prohealth.com/library/showarticle.cfm?libid=16638 ) that, if Im correct in understanding, theres a link between stress and symptoms.

When I attended my lupus and FM support group, almost all of our stories seemed similar. We all sort of agree that stress ‘attacks’ us and makes our lupus flare. Not that there isnt other things that make our symptoms worse, but stress is definitely a factor in the length of a flare.

Ive had a rough couple of weeks. Truly a high stress period. I could feel my body aching more and more. It got harder and harder to convince myself to get out of bed – and then…..I started losing weight, having really bad back pains, my Reynauds got worse. The list goes on….and even tho I did get lab work done, I dont need any doctor to tell me that I am, indeed, flaring up.

Part of me doesnt even want to see the actual doctor (esp my kidney doctor) because I know what hes going to say. I dont want to make weekly visits, I dont want to have to take time away from my job and I DONT want to feel this horrible.

Last year I participated in a clinical trial during one of my worse flares (my kidneys were failing) and I STILL WENT TO WORK EVERY DAY! Yes, I probably COULD have quit my job and applied for disability. But, not working and being productive would have made me depressed and stressed, which would have made my symptoms worse….

I have people in my own family who could really care less about how I feel, but expect me to feel pity on them for their minor aches and pains. They want to justify their laziness when, in all reality, if anyone had a reason to make excuses, it would be me.

It makes me SO angry that I fight thru my symptoms and am still a productive member of society-paying my own way, when other people just take advantage of the system.

 

What EFT can do for you

Disclaimer: I am not a doctor – I am not a scientist. This blog is posted based on my opinion only.

What is EFT? It is the Emotional Freedom Technique. It may sound wishy-washy, but this technique will do wonders if you let it. (If you click on the title, it will take you to the EFT wiki page)  http://en.wikipedia.org/wiki/Emotional_Freedom_Technique

I stumbled across EFT a few years ago, in the midst of one of those “self-help” crazes. I was struggling with personal issues as well as some major health issues. As someone who struggles with lupus, I know how important your emotional health is.

EFT uses some of the same accupuncture energy “spots” to target emotional blockages. These blockages can be anything. Sometimes we do not even know WHY we feel the way we do. This process can assist you in targeting your “problem” areas ~ However, this process wont work if you are not honest with yourself.

Some have labeled EFT as pseudo-science, however many individuals have gone thru this process and believe that it helps. Personally, I believe that it is a combination of the tapping along with the facing of whatever your problem is.

There is really no need to pay someone to go thru the EFT process. If you feel that you need professional help, by all means – do it.

So, if you clicked on the title, you pretty much have an overview with the exception of any details. So, without further addoo…

This is the front page to the FREE EFT Course on Dr Mercola’s site:
http://www.mercola.com/forms/eftcourse1.htm
NOTE: At the bottom of this webpage, click on the link that takes you to the next part. There are 7 pages in total to look at. Please do not skip these steps, including page 4.

This is a pretty comprehensive site. There is a little bit of everything here.
http://www.eft-therapy.com/

I hope that I have opened your eyes as to how EFT can help. It is by no means the ONLY way to solve some of your emotional problems, but positive thinking can go a long way.