Life With Chronic Illness: The Spoon Theory

If you have a friend, loved one, or are just trying to understand what it’s like to live with a chronic illness, take the time to read the wonderfully written Spoon Theory, by Christine Miserandino. It’s the only article that I’ve ever seen about chronic illness and pain, that is really able to convey the feelings of constantly trying to balance what must be done to survive on a daily basis, work, preparing food, affording your medications, tests, going to weekly sometimes daily doctors appointments with the lack of energy and the constant companion of pain.

Until people really understand the daily stress that the chronically ill face, we will continue to have a medical system that is severely and painfully lacking, as well as a medicare program which ignores the fact that much of it’s population is not the older retiree, but young people who are very ill and must be cared for very differently.

Could you do it? Could you balance being in pain, having a family life, working, affording a home, as well as thousands of dollars a month in medical bills? I know I couldn’t do it while having Central Pain Syndrome, Fibromyalgia, PseudoTumor Cerebri, Mild Kidney Nephritis, and a history of Lupus.

Now I’m one of the lucky ones. After two years of fighting, I get federal disability and was approved for medicare, though it’s coverage rates are easily three times as expensive as our current insurance. With my husbands current insurance our out of pocket medical expenses range between $1100-$1400 a month. I think everyone should imagine what would really happen to them if they were diagnosed tomorrow with a disease like Lupus, what would you need to help you survive, and could you fight it without radically changing your lifestyle?

Click here to read: The Spoon Theory By Christine Miserandino

Because of the Pills and the Funny!

So I haven’t really been sleeping lately. No matter how much I try to do everything the doctors tell me to do for insomnia; some how I find myself awake at 4 am staring at the ceiling with my skin on fire. Ok, so my skin is not literally on fire, there are no actual flames. But since I have Central Pain Syndrome, when I wake up at 4 am real flames or not, I feel like I’m being torched. (If you are nice and want to find out about CPS go here http://www.centralpain.org/. It will make me smile, and feel like people care about the world! ) I think I have less insomnia, then you know, fire demons that like to dance all over me  and keep me awake.

Usually  waking up like this results in one of two things happening, either I stumble around the bedroom for a few minutes at  time, trying to walk it off, and man up, or  I just give up, acknowledge that it’s going to be really bad, and retreat to the living room where I plan on marshaling my defenses.

That’s how I found myself the other night, tiptoeing down the stairs while Rich and the dogs where still asleep. I was wrapped in just my extra super soft brown blanket; that I save for when my skin feels like burning hot oil’s frying it. Don’t you just love my descriptions. Nice and gory and just like what it feels like! Anyway, I had managed to sneak out of the bedroom with out waking anyone up; which I was convinced was a minor miracle, since not only were the dogs in there but our cats Houdini and Bella as well.

I made my way downstairs to the fireplace, switched it on, and laid down in the pile of comforters. But I was shaking really bad from the pain, I find it kind of amusing when I get shaky, it’s like I could make a milk shake just by holding the glass. I decided to take some extra pain meds, and then a little more,  and after a while even a little more. My thinking being if I can handle this at home, it be so much better then at ER that will just fry me with the fluorescents, and make me sicker for another few weeks.

On top of the medicine, I was doing anything I could to simply distract myself from the pain. Watching reruns on Bravo, and trying desperately to focus on my new FAVORITE BLOG Hyperbole and a Half, which everyone needs to read right now! Or after you finish reading this post. It had helped distract me through a few other flare up’s, and I thought it would be a great idea.

Luckily after about an hour of waiting for the meds to kick in, and reading the same line over and over again, I started to feel a lovely light relaxation going through me. After a few minutes the burning was still there but honestly I couldn’t have cared less. As it worked it’s magic, I could finally follow what I was reading, and was cracking up like crazy. I will admit that the medicine may have made me relaxed enough to both start dozing while laughing, and maybe even to laugh laud enough to possibly wake up the dogs.  Who may in turn have woken up Rich. That being said, I don’t blame myself for my husband groggily descending the stairs at close to 6 am, with the most confused look on his face. He just stood there for a second as if he was coming to and then said “for someone who feels bed enough to go all the way downstairs, it sounds like your having a good time.”

And I was because of the pills and the funny!

This is my life – My experience with chronic illness

I was granted disability yesterday. It’s a blunt hard statement for me; one that reeks of failure and giving up. I’ve been fighting against being sick; being handicapped since I was 12 years old. While I know this is for the best I really can’t help but feel like I’m letting the 12 year old version of myself down.
I think to understand my story you need to know a bit of history. I was born to a pretty normal family in Northern NJ, yes that where the Real Housewives of NJ are from. My Mom was a single parent; my father was completely out of the picture and she was responsible for everything. She did a great job. Our house was really creative, my mother is an elementary school art teacher so we were always doing crafts. It was a really good childhood and there was a lot of support and time spent with my grandparents both of whom taught me things they thought I needed to know about.