The Negative Direction In Which National Healthcare and Insurance is Headed

I am going to apologize for what I am going to say. I have no intention of being offensive but this could potentially be offensive when read by some people. These are my opinions, & written by me. And I’m sorry if I offend anyone as that was not my intention.

Let’s discuss Insurance Companies for a moment. Every year the price we consumers pay seems to go up and up, in a way that many can no longer afford. How is this right?!??? I don’t have a problem paying for my Healthcare, because I was raised to always budget money every week, month, year to cover said insurance. But we are now coming to a point that the cost is becoming astronomical. Due to this people are being put more and more at risk for ending up in life altering debt, Due to the fact that they couldn’t get insurance at an affordable price point, but still needed medical care!!

Why should this be an option? When did it become okay for women, children & the elderly to not have medical coverage?!?! Pregnant women, young children and the elderly are typically the populations that need to be able to get affordable insurance. However, that is simply not always happening. Several years back a law went into affect saying that all had to have insurance or they would owe more on their taxes. Now those with low income have the option to turn down said coverage and get a letter from the government saying they will not be taxed because they applied for insurance but were unable to pay the monthly premiums. How backwards is this.

This month alone I have had two procedures and a Doctors appt for Botox for my migraines denied! Apparently this wonderful insurance co I have had decided that they will okay God. They will make decisions for others care while not taking the time see the whole picture. “Oh it says her lungs have likely become involved due to her lupus, since her doctor has done X-rays why would a CT be needed. Oh look at this back X-ray report that said further testing is needed to confirm diagnosis. Nope, she doesn’t need that either we will just start PT sand hope that her pain that she’s dealt with will just disappear!” The patient and old RN feels like she is going crazy.

The RN in me somewhat understands. I get that they want to save people from having totally unnecessary testing and procedures & costs. If they were being honorable to decrease costs for said patient I could stand behind that.

What I can’t stand behind is these big insurance companies who decide to play GOD. There is only some GOD and I’m pretty sure he’s not in the insurance business. They didn’t ask my drs any further questions to help them the decide if other mode of treatment or diagnosis is possible. They just said NO!!! This insurance issue is getting much to out of control for people with chronic illnesses. We are always going to require more medication, more testing and more procedures. It’s just the name of the game. I don’t feel like these big corporations want to take time to figure out what is better for the patient. They just care about what is best for their companies pocketbook!!

In closing, I am super uneasy at the this way healthcare in the United States is going! I like the way it is as headed a few year by requiring affordable for all US citizens. The key word there is AFFORDABLE!! Now in my opinion, Healthcare is heading in a really negative direction. Those of us who have to have insurance should not have to sell my first born, my right kidney, and my great toe to get affordable healthcare. I sure someone in the government has a great idea on how to fix the issue!! Until then, we continue to pay unacceptable premiums.

With Love,

Amber

The Grass is Always Greener 

You know the saying you’ve heard since you were a kid “The grass is always greener on the other side?” Well, I’ve realized in the past few months that this applies to more than just cows wanting to eat from the other side of the fence. That there really is more to it!! It definitely applies to working in the home vs working outside if the home. It seems like those that get to stay home or work from home want to work outside the home, and those outside the home want to be at home.  It’s a never ending battle. 

Once I graduated with my Nursing degree in 2007 I assumed I would work in some way up until retirement. I thought I might want to go part time at some point when I had babies. But I never thought that at ten years after graduation, at the age of 32,  I would no longer be working at all. Well, not at least outside of the medical field. But it’s happened!!!!!! I am no longer working as a nurse. But as an Indeoendant Distributor for a cosmetic company. Basically an MLM. It does bring in a little money and I am so very grateful to have found something that I can do from home. Heck, I can even do it in my jammies from my bed. However, this is definitely not where I saw my life going ten years ago. 

However, I know that I am not alone in saying it’s totally different when you choose to stay home with babies or your family. Then it is when are forced out of the workforce due to an illness or disability. Since the end of August I have had to stay home due to illness. I lost my job after totaling my car in a accident where it is likely that I had either a seizure or a cardiac event! The accident was just the icing on the cake, so to speak. I had missed more days than any other employer would have allowed. And this company was so gracious to work with me and did everything they could not to let me go but after the accident it was clear it was just what had to be. At first after losing my job it was kind of nice to be home, to not have to get up to an alarm or get dressed up everyday. However, that lasted about two weeks, and then I was bored out of my mind. 

I can’t tell you though the number of times, those of us who are unable to work and have to stay home due to illness or disability, hear how nice it must be to be able to stay home and not have to work.  What people don’t understand is that there is a large population of us who have been forced out of the work force would give ANYTHING to get back to work!!! And it’s not by any means that we don’t HAVE to work. It’s not like we chose to retire and are now happily traveling the world and getting to spend time with family.  Most of us who were forced out of our jobs by our health are doing quite the opposite. We are stuck at home, usually leaving mostly just to attend a multitude of drs appointments, go to the grocery store or maybe church. If we are lucky we might find enough get up and go to go out to lunch or dinner with friends or family. But usually those plans get rescheduled because of how we are feeling!!  So we are NOT living the life. 

I would give anything to go back to work. To be able to go back to working the Cardiovascular Step Down unit wher I worked the majority of the time before I left as a Charge Nurse. This was what I loved. I loved the kind of  patients we worked with, the body system we were working with and really most things about my job!! But then the Lupus monster hit!!! I could no longer physically meet the demands of that job. So it was time to move on to things less physically demanding. Since the Summer of 2012  I have worked several jobs,  but none of them were what I loved. And over the years my health continued to deteriorate to the point where I was calling in more than I was actually working due to migraines and pain and constant illness. So I was no good to any employer or fellow employees at this point due to my Lupus, migraines and adrenal insufficiency!  

What people don’t take into account is the risk for increased rates of depression when people are no longer able to work for whatever reason. Now that person may no longer have an income or a very small one, so that puts a huge stress on the person as well as the family. Due to the loss of job  they may have lost their health insurance. And this is really not an option for those with chronic disabiling diseases. Without insurance we could potentially get stuck with thousands and thousands of dollars of medical bills that you gave no idea how you were going to pay them. Or if they can get government insurance it may be to pricey for them to get!!. There is also the potential for lack of adult face to face conversation and a potential loss of friends all related to the disease and the the job loss. Both of which can also cause or deepen a person’s depression. 

I looked up some statistics on the Buteau of Labor Statistics Page. Per their site, “Adults age 21 to 64 with disabilities had median monthly earnings of $1,961 compared with $2,724 for those with no disability.” And that’s a median number. I know many people who only receive -$500-$1000 a MONTH in social security that they are expected to live off!! I also found this statistic that I found interesting.  “Only 17.9% of persons with a disability were employed.”
According to the U.S. Census Bureau “Nearly 1 in 5 People Have a Disability in the U.S., Census Bureau Reports Report. 
About 56.7 million people — 19 percent of the population — had a disability in 2010, according to a broad definition of disability, with more than half of them reporting the disability was severe, according to a comprehensive report on this population released today by the U.S. Census Bureau.”

Those statistics were not imperative to include but I thought it was a good look at just how many people are disabled in the United States. For me the take away of this blog would be that most people aren’t happy where they are. If they have to work to provide they wish they could be home with their families. While those of us who can’t work would give anything to get back into the workforce! I also want to people to understand that many of us who are disabled don’t want to stay home and not work. We would love to return to the careers we went to college for and loved. Not all people on disability are just living off the system and not working because they can. Personally, I WOULD GIVE ANYTHING TO BE ABLE TO WORK AGAIN outside the home. 

I hope this gave you some insight!

Amber  
References:

https://www.census.gov/newsroom/releases/archives/miscellaneous/cb12-134.html

https://www.bls.gov/news.release/disabl.nr0.htm

Working From Home…,,

Okay so I don’t have a “real” job anymore thanks to my Health. But honestly, what is a “real” job anyway?  Is it real because you have to get dressed, do your hair and look presentable? Is it real because you actually leave the house to do said job? Is it real because you have coworkers that you interact with in person, or because you have an office?  All those things don’t make a job “real.”  They are just things that happen when you have a job OUTSIDE the home.  So does working INSIDE the home make it any less real?!?  Not in my opinion. If you stil get paid and get the requirments met for your specific job it shouldn’t matter where you work. 

According to the Nee York Times last alone nearly 43% of employed Americans were working from home at least part of the time. So now you are probably thinking “Man I need to be one of those people!  But what kind of jobs allow one to work from home?”  Well according to the same article the following industries allow work from home. 

Finance/insurance/real estate, Transportation, Manufacturing or construction, Retail, Healthcare, Computer/information, systems/mathematical, Law or public policy, Arts/design/entertainment/ sports/media, Community/social services, Science/engineering/ architecture, Education/training/library 

Working from home sounds all wonderful and grand.  But it to has its fair share of downsides as well.  The biggest downside  being how easy it is to get distracted when your in your own home. Where the dryer may buzz or the dishwasher ding. Or that show you’ve been trying to catch is finally on when you can catch it.  And if you are a parent you may not have a babysitter on the days you are at home. So you may have children climbing on you, asking for food or a drink, needing a diaper changed. Etc.  Sure you think oh if I was working from home I wouldn’t let myself get distracted but that’s much easier said than done. 

Many say being a Stay at home MOM isn’t a job. But it’s a FULL TIME job in my eyes. When you are meeting every need of you child/children and your spouse. While keeping a clean house, cooking dinner, doing laundry and doing all the things that need to be done in the house. You are busy ALL the time. You may not get paid financially, but in hugs, slobbery kisses and I love you’s for the kids. In my mind having never been a mom those positive affirmations and love from your kids and spouse is just like a pay check (minus The money of course). That being said being a stay at home mom is in my eyes a full time job!!!!

I suppose selling Senegence/Lipsense via social media, co-managing an online chronic illness support group and  blogging are not considered working to some. But the cosmetic company is what pays my bills.  Since my accident I really haven’t been cleared to work and have no means to get to an outside job currently.  Due to the fact that I can no longer drive, and shouldn’t be walking long distances on my own. So I had to get creative. I had to find a way to pay the important bills.  Do I get the luxuries now that I did when I worked outside the home? Absolutely not! But I have the enssnetials and that’s what matters. 

The other bonus to working the jobs I do  are simple. I can rest when I need to and for as long as I need to. Because I am often totally exhausted and need to sleep a LOT. If for some reason I am hospitalized (which seems to happen at least 3-4x annually for me) my work will wait for me till I am better. And as corny as if may sound, One of the biggest benefits I’ve found is that I have found a true sisterhood with Senegence, unlike any other company I’ve worked for. The are so sweet and have the biggest hearts and will always help when I need it. It’s truly like anything I’ve ever experienced. 

Do I, or am I able to work everyday? NO, absolutely not.   There may be days or weeks when I don’t work. And that’s okay!! Because my health comes first. And some days I may only work an hour or less because I feel poorly. And that’s okay too. My senesister will make sure by business doesn’t suffer. My co/administrators will make sure the support group continues along without issue. And my blog….. well if I haven’t written in advance it will wait patiently until I return. 

Yes, working any job from home has its benefits but there are also disadvantages. What could they possibly be you are probably thinking.  To me the biggest disadvantage is that  you don’t have the daily interaction with people right in front of you like you do when working out of the home. You don’t have that comraderie that you build with your coworkers when you have a job outside the home.  And you may feel lonely or even depressed. There is a big difference in talking to people and building that team relationship in person as opposed to over the phone or internet. And you don’t get that a lot of one-on-one personal interaction when working from home. Simply because most of your communication is over the phone or internet.  But sadly, that’s just something you have to get used to when you are no longer able to work outside the home. 

Working in the home had its advantages and disadvantages like described above. And it’s not for everyone. But once you’ve lost the ability to work outside the home due to issues like health issues,  and still have bills to pay, you have to get creative. And you may even find yourself doing something you never thought you would. That being said working for Senegence has been such a blessing, even though it’s something I never thought I would do. When I was working outside the home, I signed up with Senegence just to get a discount off products. But then ended up needing an income of some kind and this fell in my lap. I would highly highly recommend any lady (or man) who enjoys or has a passion for makeup, and needs any level of income to look into Senegence. It’s not your typical MLM( if it was I wouldn’t be working for them) they treat everyone so great and they are not afraid to let it known that everyone could have a 5 figure monthly income if they work work their business right!  I am far from that and probably won’t ever get there, but I am just so glad I found this opportunity so I can work From home. 

Amber 
References:

https://mobile.nytimes.com/2017/02/15/us/remote-workers-work-from-home.html

My Senegence Page: https://m.facebook.com/groups/1426452860768009?ref=bookmarks

Senegence home page; https://www.senegence.com/SeneSite/Home.aspx

Support Group: Lupie Groupies on Facebook!

Where Did All The Money Go????Bills Pills Bills Pills…..

By Amy Nora
It is the never-ending cycle of what many of those with Lupus and other Chronic health conditions struggle with. The financial struggles that people with SLE face can be a challenge on many levels. According to the Lupus Foundation of America, the average lupus patient spends approximately $12,000 annually on treatments; however, many treatments cost several thousand dollars a month or every few months. There is also the problem of loss of income due to the inability to work full time or the need to go on disability. The average total annual breakdown cost per Lupus patient in the United States is $20K.  

This is an extraordinary amount of money to the average person or family. There are ways to help soften the financial impact though. First, drug manufacturers offer assistance programs for patients that are not on Medicare, Medicaid, or Tricare. If you are on any of those three programs, it is illegal for them to assist. These programs offer help with the medications that have copay’s of several hundred to several thousand dollar copays. Second, are organizations that have grants or funding available to assist with various costs associated with various conditions or drugs that are not associated with drug manufacturers so they do not fall into the prohibitive statues under the law. The most heard of and known one is the Healthwell Foundation to those in the Lupus community. Third, if you can meet with a financial advisor to work on medical expense planning. This is now just as important as retirement planning for those with chronic medical conditions. This is not Health Savings Accounts, this is not a specific type of account, this is a strategy based off expenses and potential length of ability to work.  

There are honest and hard financial discussions that must be had if you have a medium to severe case of SLE. I would encourage you to plan wisely. When those expenses come that none of us can plan for, let us make sure we use what resources we can to lessen the impact as much as possible.  

We already have to deal with pills, let’s do what we can about those bills…

 

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http://www.resources.lupus.org/entry/facts-and-statistics