Sunday, July 13, 2014

I choose courage


It's been a stressful week and since it's summer and my kids are home I have had no time to process things or to take a few quiet minutes and find peace. I can't even think anymore because there is always a kid yelling "Mom!!" every second of every day. I don't think I've gone to the bathroom without being harassed since school got out on June 6. I'd really like to go to the bathroom without children shouting at me through the door or children trying to kill each other. Even now I'm being peppered with questions and my stress level is heading through the roof as I can't even write one paragraph without interruption.

What does this word vomit have to do with courage? I don't really know, I started this post with one idea in my head and it morphed into another as my seven year old was whining about not being able to watch tv. Still, I think that courage can be found in these moments. Courage is not always big or obvious, courage is waking up every day and continuing on even when your body won't cooperate. Courage is listening to your kids whine when every muscle in your body is screaming.  Courage is finding ways to live even though your life isn't what you thought it would be. I choose courage even though it's not always ideal or pretty. I choose courage because I refuse to let my body defeat my mind.

Wednesday, July 9, 2014

I'm jealous of you, again




This is an update on a I wrote a post a few years ago "I'm jealous of you."


If you can have a normal social life... I'm jealous of you.

If you can maintain normal friendships with give and take...I'm jealous of you.

If your ability to function is not based on whether or not the pharmacy will fill your prescription... I'm jealous of you.

If you don't constantly worry about medical expenses... I'm jealous of you.

If people don't treat you like your invisible... I'm jealous of you.

If you've never heard "if you would just get off the couch you'd feel better"... I'm jealous of you.

If you don't have to base your whole life around your health... I'm jealous of you.

If you wake up every day feeling refreshed...I'm jealous of you.

If you don't think you need medical insurance because you're young and "never get sick"... I'm jealous of you.

If you can work... I'm jealous of you.

If you think illness can be controlled by just eating the right foods... I'm jealous of you.

If you still think that doctors are able to help sick people... I'm jealous of you.

If you've never been told "it's all in your head"... I'm jealous of you.

If you don't get referred to in a whispered voice as someone you know, she has those "health problems"... I'm jealous of you.

If you don't feel like you constantly have to defend your lack of achievements due to your health... I'm jealous of you.


There is no magic switch you can flip that turns off your hopes and dreams when you get a chronic illness. It's a cycle of grieving that you go through again and again. Most of the time I'm fine, I've accepted things, I'm making new goals, and I'm okay with the way things are. Sometimes something happens to remind me of the life I lost and I go through the cycle of grieving all over again. I don't think jealousy is something that will ever go away. The important thing is that it is something that I need to work on and not let it get in the way of relationships.





Monday, July 7, 2014

1/3 of ME cases wrongly diagnosed

"Third of ME cases 'wrongly diagnosed': Experts says thousands thought to have chronic fatigue actually have similar condition that can be treated"

This article is a bit scary, but misdiagnoses is a real issue (even though this article is about the UK and not America). When it comes down to diagnosis of ME/CFS and Fibromyalgia which involve excluding everything, it's important that physicians actually exclude EVERYTHING. Too many doctors use the diagnoses as wastebasket diagnosis so they don't have to use up their "valuable" time. Make sure your doctor doesn't do this to you!

"Truth be told" book review

"Truth be told" is the story of Amelia Wagner who after her father's death takes over his newspaper in Granite Springs, Arizona. Amelia quickly gets caught up in the troubles of Granite Springs and the investigation her father was pursuing before his death.

I found Amelia to be a very likable character. She is independent, smart, and willing to do the right thing no matter what the cost (which causes her some problems along the way). She tackles a large mysterious corporation in her effort to defend the town and the people that she care about. My only complaint about her character is that she seemed a little too perfect. She was a little too good and never seemed to mess up. Without any flaws she just didn't seem to be a fully developed character.

This book is a good mix of romance, historical fiction, and mystery. I found the plot to be very predictable but I also found myself eagerly reading till the end to find out how everything went down. I don't know that I would read this book again, but it was definitely worth reading once if you need a quick enjoyable read.

I was given this book by Bethany House for my review and was not required to give a positive review.


Monday, June 30, 2014

Insurance hell

I shared here about the nightmare of dealing with insurance and Lyme disease and that was only a very small part of that whole nightmare. Now that I'm no longer being treated for Lyme you would think my insurance problems would be better. Not so.

Last week I didn't sleep the entire week, want to know why? Because my insurance decided to in order for me to get my generic basic sleeping pill I had to get special authorization from my doctor. Apparently my prescription is not actually authorization (what the hell?) even though it was just fine the first time I filled the prescription. Apparently the REFILL was offensive to my insurance company.

So my pharmacy requested this special authorization from my doctor because my pharmacy is awesome (I drive 20 minutes one way to go to this pharmacy because they will actually do things like this). My doctor's office is staffed by morons, so here I am more than a week later without my refill. After not sleeping for a whole week and having my health majorly decline as a result I finally bought two pills with my own money. I've used those two pills and still there is no sign of my prescription being approved. I have no idea how I'm going to sleep tonight. Over the counter medicine does jack squat for my sleep.

This is just one small snapshot of the insurance nightmare that goes along with chronic illness and my insurance is actually more cooperative then most. They at least generally pay for the stuff they are supposed to pay. Though don't get me started on the difficulty of getting a narcotic prescription filled. STOP THE INSURANCE MADNESS.

Sunday, June 29, 2014

Moving forward




Sometimes it's not helpful to focus on the positives or the negatives, sometimes you just need to focus on moving forward in whatever way you can manage.  Sometimes I get too caught up in what I can't do that I find myself stuck. I get stuck on focusing on the "can't" and not on the "can." I don't always manage it, but my goal is to keep making forward progress. Not necessary health wise because that is beyond my control, but spiritually and mentally. Life is a learning process and that learning process hasn't changed by my health crisis.

Friday, June 27, 2014

Health vs chronic illness

Healthy People: I'm so tired from staying up late last night
Chronically Ill: I'm so tired from lying on the couch all day

Healthy people: I hate working, it would be amazing to stay home all day doing nothing
Chronically Ill: I'd give anything to be able to work.

Healthy people: I'm so excited about going out tonight!
Chronically ill: Okay, if I want to go to the party I have to cancel all the plans the day before and the day after. Do I have any doctors appointments? No, I'm okay. Is there anything I have to be at in the time frame? No, okay I might be able to go if I rest up. I wonder if there is an elevator or if I have to climb the stairs? Is the parking lot a long ways away from the building? Note: check website to make sure there is convenient parking. If the parking is close, I might be able to go as long as nothing else comes up and my body co-operates.

Healthy people: Why can't you get up off the couch, you're so lazy.
Chronically ill: Why can't you try to understand that my body doesn't work the way yours does? It's not for lack of wanting that keeps me here.

Healthy people: Why do you only think about yourself?
Chronically ill: I'm in so much much pain and I'm so exhausted it's all I can do to survive and yet it's not enough for you. I wish you knew what it felt like to fight this fight.

Healthy people: Why aren't you exercising more? If you exercised you wouldn't have health problems.
Chronically ill: Every time I exercise it puts me in bed for three days straight.

Healthy people: Anyone who takes regular pain killers is an addict.
Chronically ill: I have to take pain killers just to survive. I wouldn't be able to function at all without the occasional lowering of my pain. If you could take the burden of my pain for one minute it would knock you over with it's strength .

Healthy people: I don't even have a doctor only old people get sick!
Chronically ill: I have four different doctors for the four parts of my malfunctioning body and I have to see each one of them every three months. I spend my life juggling doctors appointments and dealing with indifferent doctors offices and ignorant pharmacists.

Healthy people: If you really wanted to feel better you would try harder.
Chronically ill: I've tried so many things and spent so much money and nothing works. There is no cure for my condition, I can only cope.




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