I am really trying to be more disciplined about posting to this blog. Really. No - really. I am. I just suck at it! I should be better at it. I'm always home and I have a huge amount of time on my hands. I'm housebound rather than bedridden, but I have such a hard time walking or even standing in one place for longer than a few minutes, that once I do get downstairs to the living room/kitchen area of my small house, there isn't much I'm able to do. I'd love to be able to spend more time with my husband and family and I would, but it's just too hard.
I am one of those who suffer from an invisible illness every day. Well, okay ... my primary condition isn't all that invisible because I'm quite a bit overweight, and when I do get the rare opportunity to go outside of my house, I drive a candy-apple red mobility scooter. When I do walk I use a rolling walker or 2 canes, so I'm hard to miss! I have been "officially" disabled since 2000 with crippling degenerative joint disease of the spine. Also, the knees, shoulders and most other joints. The last bone-guy I went to took a look at the x-rays and MRI and declared my right knee "totally destroyed." The left knee is following along quickly. In a medical Catch-22, I can't have my knees replaced until I lose more weight. I need weight-loss surgery, but I am not a good candidate for such surgery. When I am out with my husband and I get out of our car, - with it's handicapped license plate - which we park in a handicapped space, other people know right away that I am handicapped. I have other conditions or illnesses - diabetes, high blood pressure, glaucoma, cataracts and neuropathy; all of them invisible illnesses. For people who suffer from invisible illnesses, it is not as clear.
Those who suffer from diseases like cancer, Chrons Disease, diabetes or MS don't carry signs around. You'll never see anyone carrying a sign that reads: I have cancer. Or: Give me a break - I just got out of the hospital.
People just don't do that. Healthy, able bodied people would be made to feel uncomfortable. Of course it's not done! People who suffer from those diseases and other invisible illnesses don't want pity. They don't want to say that the reason they are being so slow in front of you in line at the grocery is because the chemo therapy they just had that morning made them feel so weak.
I find the statistic pictured here mind boggling! It reads in full: "People do understand, we just don't know who you are."I know that most people want to be able to help those in need. What those who suffer invisible illnesses want most of all is understanding. The person who gets out of the car that's parked in the handicapped space might not look handicapped to you and perhaps you feel a sense of righteous outrage. Hell, when I see someone who looks able-bodied walk from the car into their destination, sometimes I get so mad, I want to make a citizen's arrest.
I should be ashamed of myself. I, of all people, know that there are those who don't look ill, but are, and they need that parking space. That's why we have the placards or the handicapped license plates. Because we deserve to have them. They may be perks, but we need them.
You know, those placards should not be easy to come by.
In order to get one, I had to fill out a form saying that, in my case, I wasn't able to walk more than 100 feet without pain. Then I had to have to signed by my doctor. I'd like to believe that all doctors are honest and trustworthy, but I've learned not to be naive. That's because it took me three years to finally get disability. I finally had to hire a lawyer. That cost me $5,000.00. I was not as crippled then as I am now, but several years ago, I had to go to a physical therapist rehab center so I could prove that I needed a mobility chair. The PT said, "Well, this shouldn't take too long. I've already seen you walk."
But there are people all over the place who have disability. It's not for me to decide who really needs it and who doesn't. I certainly should know better than to assume that someone isn't handicapped. How would I know, anyway?
One invisible illness besides my own that I know about from personal experience is ESRD, which stands for End-stage Renal Disease. Once a person’s kidneys stop functioning a person has to undergo treatment on a kidney dialysis machine. They have reached the point, the end-stage, where, without the assistance of the kidney dialysis machine, they would surely die. Back in 1969, when my Dad learned that he suffered from End-stage kidney disease or ESRD (End-stage Renal Disease) it was what my Mother refers to as “the pioneer days” of kidney disease treatment.
Medically, things that have to do with the kidneys are fall under the topic: renal. Once the doctors figured out what he had, it became clear to my Mom that her husband had contracted an incurable disease. A person with kidney disease can be kept alive by being “run” on a kidney machine, an apparatus about the size of a washing machine that cleans the patient’s blood, but their quality of life has undergone a drastic change for the worse. Such invisible illnesses may be invisible to outsiders, but once the sufferer goes inside his or her home, the illness usually becomes all too apparent.
With a kidney patient, there is this medical procedure where a vein and an artery are surgically joined together, because the kidney machine requires arterial blood for it to work. The place where they are joined is called a “shunt.” The blood comes out of the shunt, which is above the patient’s left wrist, goes through the tubes leading to the machine where it gets stripped of the poisons that had built up in the blood (and which are otherwise filtered by a healthy kidney) and then is returned to the patient’s body through a vein in the crook of the left elbow. That’s a vastly simplified explanation of what the kidney machine does. The kidney machine is also hooked up to the water line because water, is necessary. In March, 1972 Dad went on the kidney machine at St. Barnabas Hospital in Livingston, New Jersey. My Mom, a stay-at-home mother of 7 children - at that time, the oldest was 25, the youngest, 9 - took lessons at the hospital on how to run her husband on the kidney machine. In May of 1972, my Mom began running my Dad on the kidney machine in our home. Of the 8 people who took the classes to learn how to run the machine, all other 7 died in less than 2 years. My Mom ran my Dad on the kidney machine, which was set up in the finished basement of our home, with Dad seated in a leather recliner, for and ran him for 16 years and 7 months. My Dad’s doctor told my Mom that he didn’t know why my Dad lasted so long, but he didn’t think it was anything that he personally had done. It was the quality of care my Mom provided for my Dad. A doctor friend of my family told my Mom that it was “a miracle” that my Dad had been on the kidney machine for more than 16 years and had never had an infection. I want to stress that my Mother had never had any medical training except the 3 month-long course she took at St. Barnabas Hospital in 1972 on how to run a kidney machine. She found out that my Dad had an incurable illness on Christmas Eve, 1969 and knew that she couldn’t tell her seven children anything about it; she didn’t want to spoil our Christmas. She bore the knowledge that her husband was going to die, perhaps soon, all alone that Christmas Eve. In the days, months and years that followed, my Mom gathered her formidable strength and, as is her way and repeating often what is one of her life’s guidelines, she “did what she had to do.” Once she began taking care of my Dad, all the while running the household and raising 7 children, she set up a routine. My older sister (by a year) and one of my younger sisters, (3 years younger) were old enough to help my Mom with our younger brothers and sister. My Dad died of end-stage kidney disease in 1988, at the age of 68. He is my hero for what he endured during the 19 years he suffered from his truly awful “invisible illness.” He tried his best to go to work every day, even when he was so weak, it was hard for him to walk. My Mother, who is now 84 years old, is my hero now and forever.
What can you do to help those who suffer from an invisible illness? For a person who could be your next door neighbor or one of the teachers at your child’s school?
At the above link, you’ll find ways you can help.
September is Pain Awareness Week. At this link: http://www.painfoundation.org/take-action/action-network/about-us.html you’ll find information about how many people suffer from pain and how it affects all of us. The American Pain Foundation is sponsoring a Virtual March on Washington to raise awareness about pain and those who have to deal with it. The people at Invisible Illnesses have joined forces with the APF about this important subject.
I have used the word “suffer” over and over in this particular blog. Many people who have an illness or condition, apparent or invisible, have little or no quality of life. For some of them, life is something to be endured rather than enjoyed. A doctor, a pain management specialist whom I saw because of my own chronic pain, told me that eventually, every person who suffers from chronic pain gets to the point where even narcotic pain relievers will stop working. That’s quite a grim statement, isn’t it?
There are ways any one of us can do something to provide aid for those who need it.
Find out how you can help. I’m just sayin’.
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