Saturday, December 22, 2012

The Inner Battles

When it comes to chronic pain like Rheumatoid Arthritis, the inner struggle with yourself can be the worst battle. The feeling of losing control over your health, the fear of what the doctor will say, what the blood tests will say. I get the most anxious in the waiting room to see the many doctors I see. Always wondering if they will bring good news or bad. But I also become anxious while sitting at home. Even before the RA set in i battled with anxiety, but it has gotten worse since being diagnosed with RA. The ever lasting fear of being out of control with your body is a hard thing to grasp for people who are healthy. But its also a hard thing to grasp for those us that do deal with it.

Trying to maintain a normal life has become rather difficult. Relationships of all kinds become harder to maintain as some people do not fully understand why someone with a chronic illness cannot do the things they once did, or do the things that normal people their age can do. I sometimes get angry when I hurt. And take it out on the ones I love the most. And they have done nothing to deserve it. But it just happens. My life was turned upside down in nearly a single day. Who wouldnt be angry? But I've learned that I cannot be angry all of the time. When you are dealing with a constant pain everyday your way of thinking completely changes and your life takes on a whole new meaning. The struggles you deal with are not what most people would consider a normal thing to deal with, especially at my age. Numerous doctors, never ending appointments, prescription refills, new medications, needles, self injections, failed infusions, blood tests, counting out pills in the mornings, mid day and evenings, fatigue, and the ever constant pain in nearly every joint hell I could go on forever. But my biggest struggle, is that I still cannot fully grasp that I am not as strong as I once was [physically]. I still tell myself that I can do certain things that I once could, then I do them and end up hurting myself and become angry&rather frustrated. Mentally I am more strong then I ever thought I could be. I've had people tell me to just stop talking about, stop over thinking. Well, I tried doing that and it only made matters worse for me. We have to mentally prepare ourselves on a daily basis before we even wake up. Take a deep breath before doing something that is so simple, but causes a deep pain in the joint we are using. 

As hard as it really is to imagine what it is like to have a chronic pain condition those with out it will never know the struggle. 

I am not asking anyone to understand, but to just listen.

-Little Wurmie-

Monday, December 3, 2012

Think before you speak...

So, alot of people who suffer from RA or any kind of chronic illness always do lists of "Things not to say to the chronically ill" so I decided to do a little list of my own. The ones I hear a lot that always seem to annoy the shit out of me and make me want to slap the person. So with out further ado, here is Little Wurmies list of things not to say to a chronically ill person.

1) You are to young to have that.
    -no shit sherlock, you don't think I know that? But just so you know, it affects children as young as 10 months of age

2) You should just smoke weed everyday all day. It will dull the pain and help it.
   -You are a stoner, I hate stoners. I hate weed. Dont ever say that to me or I will beat you with my cane.

3) I know how you feel, my feet hurt all of the time.
   -You have no idea how I feel, or what I deal with. Only ones who suffer from RA know how I feel. You can go suck a pine cone.

4) Just take lots of painkillers, thats what I would do.
  -Well i'm glad you would do that, but that is not me. Painkillers DO NOT help the underlying cause of the disease. And half of the time my pain is so severe that even the highest dosages of them do not work on me. So why put my stomach and liver through more bullshit just so I can get high? No thank you.

5) I know someone who has it and they are not as bad as you. I think you just over think it and complain to much.
-You are a asshole. If you really think that RA is the same with every person, you need to do your research. RA is different with everyone who has it. Some cases are more severe then others. Let me compare my case and my mothers case. We are blood, meaning you would think our disease would be similar. FALSE. She was diagnosed at age 40 I believe. I was diagnosed at 21. She has pain in her hands, feet, shoulders, wrists and some other odds and ends. Mine is nearly in every joint and also I have severe chronic back issues. She has NO back issues. My knees swell up and have cartilage damage i'm almost certain. Hers do not bother her as much. Her hands are less curvy then mine. I suffer from stomach ulcers from my biologic treatments and methotrexate, she does not. She has an easier time walking in the mornings then I do. She can work longer hours then me, because if I work more then 5 hours at a time I am worthless for 2 days after because my body becomes so stiff and achy its hard to move. Only thing that is more severe in my mothers case are her hands. Her hands bother her more then my do. Yes, mine hurt a lot. They are weak. But hers tend to hurt her more then mine do. My mother is a strong, hardworking woman and I love her to death. But one should never compare RA to another ones RA. Its simply cannot be done.

6) But you look fine.
 -Why thank you, but I feel like I got hit by two buses at once.

7) Why are you limping?
-I really dont want to explain it to you. I have Rheumatoid Arthritis, lets just leave it at that.

8) You used to be so active and full of energy, how can you have arthritis? You are only 23.
    -RA can happen at anytime. Your immune system decides all of a sudden, "well i'm bored so i'm just going to destroy all of the healthy tissue in your body and cause you severe chronic pain every day, all day and completely flip your life upside down." It has a mind of its own, and if it wants to ignore all of the will.

9) Maybe you should not talk about it, and just accept it.
  -I will NEVER ACCEPT THIS DISEASE. EVER!!! If i accept it, I am giving up the fight. I will battle, argue, spit, scream, and go out bloody fighting this until the day I die. I will not let this disease take my life from me. I will not stand down to it. I will not "accept" that I have it because that leaves NO ROOM for fighting it. It's like accepting that you have a sucky life and doing nothing about it. You have to fight to change it. You have to battle the hard times, you have to stand up to the evils in life. You cannot just sit around and say...okay...I accept that my life sucks so i'm just going to keep letting it suck. NO! I dont think any strong person would do that.

Yup, so there are some things that I have run into over the past years of dealing with RA. One of the downsides to it is peoples stupidity of not thinking before they speak. I do get a lot of positive things from people also. More positive then negative. But everyone who suffer from a chronic condition has their little list of "phrases that piss me off" so I thought I would share mine :)

-Little Wurmie-