Dear World....

Hello world! This one is for YOU!! No matter how hard we try there are always going to be some level of judgement within. But most of us keep that judgement to ourselves, and don't stare people down or make comments when we think they shouldn't be using that wheelchair, or parking in a handicapped spot or even just wearing a mask out in public. That being said many people don't keep those judgments to them self and they make the rudest comments. Today this post is directed to those who can't keep their judgments to themselves.

Yes, I know what you are thinking when you see me get out of the car that I just parked in a handicap spot. You look me up and down and then proceed to think, "There's nothing wrong with her why would she park there!" And some will even glare or make comments. By looking at me all you see is what looks like a healthy lady in her thirties who's only issue is that she is overweight! However, you CAN'T see my Illness! It's INVISIBLE!! Meaning you may not be able to tell I have anything wrong by seeing me or even talking with me, unless I'm wearing a mask, or limping or even wearing sunglasses inside or using a cane or wheelchair. Otherwise there is no physical manifestation you will see!

You don't know that even getting out of bed is hard. Getting dressed and ready is exhausting. And could take several hours just to get to point of walking out the door. Due to needing to take multiple periods of rest! By the time we finally make it to wherever we are going, whether it be a restaurant or a place to shop, we have no energy or spoons left AT ALL! You can't see that it's hard to breath, and my heart is beating way faster than it should. You can't see the HORRIBLE migraine I am suffering from. Or know that the lights in the store or from the sun are making my head hurt that much worse. Or that the urge to vomit from said headache gets stronger with every step and movement!! But yet you continue to whisper and make comments and stare me down.

You don't know that I woke up with a pain level of 8 and even after taking my prescribed dose of medication. I am still at a 7. You can't see that every step is agony and every time I have to grab the cart to push it in the grocery store, that pain radiates through all my fingers, hands and up my arm! You can't see the pain that is in my back and pulsating with every movement. Yet you still continue to stare and make comments and judgements.

You also don't understand pain meds. You don't understand that we would all rather do anything else than take pain meds. And NO most of us are not addicts and should not be treated like we are. If 99% of you were in our shoes you couldn't do half of what we do. Because we have gotten used to the pain and know that I can't stay home in bed just because I hurt. Because, if I did that I would never leave the house!!

I love when you see my mask and you turn around and go the other way because you are fearful for CATCHING WHAT I HAVE. Well, in this case the JOKES ON YOU!! The situation is actually the opposite. I wear this mask to prevent CATCHING what YOU have! You don't know and can't see it, but my immune system is to busy fighting off my body to worry about fighting off any germs i in contact with. What you may think is a just a small cold for you, could potentially put me in the hospital or even kill me! So I have to protect myself from you and the world!

And you will never understand what it's like to have to stay in your home for weeks on end because the flu is running rampant in your area! What it's like when you see people on social media and wish you could be out having fun. While instead you are stuck in your home because the flu for someone like me with Lupus could KILL ME!

The public will never understand the invisible illnesses. In general people will forever think that if there is no outward sign of illness, or pain (like a cast on a leg or a person on oxygen) they will most like assume that you are fine.....JUST LAZY! Which couldn't be further from the truth. That has been the thought process for many many years and it will be hard to change. In general, the public doesn't understand any illness that they can't see. And we understand that. What we don't understand is the need to make hateful and judgemental statements. How does that help in any situation?!?

I'm going to wrap this up with a few statistics for you regarding the invisible illness. And give you something to think about. Approximately 10% of Americans have a medical condition that could be defined as an invisible disability. And 96% of people with chronic medical issues, live with a condition which is INVISIBLE!! And most of those people don't use a cane or assistive device that would show they are ill.

Perhaps after reading this someone will think before they judge! Hopefully, they will hold their tongue before making a rude and hateful comment. I know that's wishful thinking, but I would hope that seeing this Information would make them think. If this reaches just ONE person who will change their thoughts about people using handicap spots or a wheelchair than I've done my job!!

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