Grief is an interesting emotion that can be felt for any number of reasons. To most people, grief is associated with the loss of a loved one, or the loss of a marriage or relationship. Most wouldn’t think that one would grieve what they’ve had to give up. Or the loss of a life once lived. But that’s exactly what I think of when I think of grief. I think about the fact that I am mourning the life I once lived and the goals I once had. The life I had before Chronic illness rocked my life.Read More
Disability......Has almost become a dirty world for those who are trying to gain disability due to some life altering condition and have been denied. Filing for disability is a long and arduous process at bestRead More
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!
Man….. you don’t think about how one situation can totally mess up your whole system until it happens. I realized that a week ago today when I was in a car accident. It was nasty. But nothing broken. Just a concussion and a torn up knee. And lots of bumps and bruises. (And the other person wasn't hurt either.)Then the realization set in yesterday that I am now in a lupus flare. And my adrenal glands are on their way to sending me into an adrenal crisis!!! I wrote my rheumatolgist to see if I could do steroids or anything to prevent the worsening flare. And she told me LIGHT STRETCHING was the only thing I could do. Really?!?!? You hurt as bad as I do everyday and then get on the floor and stretch. If I could even get to the floor there is no way in hades that I could get up. With my knee in an immobilizer and my arms so sore from crutches and the accident I’d be stuck. And they weren’t kidding when they said day two and three would be worse. Holy moly! It’s insane. The scariest part of this whole ordeal wasn't the accident itself. Simply bc I don't remember it. But THAT statement is the scary part. I have absolutely no idea what happened. The ambulance came quickly and whisked me away to the Emergency Room. That's when everything stopped. Apparently they didn't have any rooms in the back, so they set me in wheelchair with my c-collar, crying like a weirdo in the WAITING ROOM. This is where I sat for about two hours before I saw a nurse or dr. Ya I get they were busy. But one would think that a car accident with loss of consciousness would trump other things but I guess not. The whole time I was at the hospital I sat and balled. Like sobbing. I just couldn't quit. But I am so glad my mom was there with me the whole time. I wasn't always nice to her,but we blame the pain meds and the accident on that. But she stayed right there with me. Even at 32 it's nice to have your mom around when you need her!!
I'm a cryer yes. But I never sit and cry inconsolablely for a hour. That's not my norm. So, I can only assume that it was the shock of the accident and concussion I had causing all those tears. The ER Dr told me I had no broken bones or major injuries. Put an immobilizer on my knee and gave me some crutches and sent me out the door. I was glad to go home but the really pain and soreness was just setting in. Man you never believe how much everything is going to hurt for days following an accident until it happens to you. I am still sore and very bruised and it's been a week today. And I still can't bear full weight on my leg. Sigh. We are doing some medical tests and will give my knee another week go see if it heals on its own.
So not only am I deal with my pain and emotions from the car wreck. I am now dealing with the fact that I lost my job. I understand where they are coming from. My absences make it hard to count on me. And now that I can drive or work until the dr clears me. (We are going to test my heart and do an eeg to see if I'm having seizures.) That means I have no idea how long it will be before I am cleared to work or drive. I am not mad at my boss as I know she is looking out for her patients. And right now they need someone who can be there all the time. She did say that if I ever want to come back I can. That I've not burned any bridges. This company was fantastic to work for. And they went above and beyond to make sure I had what I needed. And gave me more chances than anyone else would have with my absences. But It still sucks because I have to go pick up all my belongings thatbwere in my office. Which is sad bc I loved my job and I'm sad that part of my life is over.
Now the question is what am I going to do for money $$. Because sadly we can't live free in today's society. I have become a distributor for the makeup company Senegence. And in doing so have been able to make decent money. So I'm praying that I can continue to grow my buisness and that I can do this and not have to go to work again outside the house at least not right away!! If not I am not sure what route I will go. Only time will tell!!
So many emotions and thoughts are swirling through my head. Who would have ever guessed that losing your car in an accident could be so emotional. I guess for most it's probably not. But buying that car was the last thing my grandpa and I did together before he passed several years ago. So I feel like that car was my last earthly connection I have to him. And that's hard. Because I miss him so much everyday.
Anyway, I'm a little rusty on this whole blogging thing if you can't tell. My thoughts have been all over the place. Which for a Lupie isn't that strange but usually my writing is better than this. But I wanted to share my thoughts and what has been going on in my life. I promise I will now be getting back into blogging now that I have a little more free time!!
Love always ❤️