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-

Thursday, November 29, 2012

tis the little things...

So i'm feeling inspired to write tonight. So I figured why not? Today was another painful day. But I had my first chiropractor visit and it went very well. Although he said I do have a lot of issues with my spine, hips, neck and my jaw, he believes he can help me. As soon as he shook my hand I could feel the positive energy and hopefulness in him. He kind of reminded me of my boss, whom is a great man and I thank God for him everyday. As we started talking he was looking at my charts and was stunned at how much of a burden I have to carry on a daily basis at such a young age. But then he said that he could just tell by the way I smiled and the way I talked that I didnt let this burden make me bitter and angry like it does to most people. I then smiled and said "if i let myself become bitter&angry what kind of life would that be? in order to get better, you have to think better&positive" I cannot lie, at times, I do become bitter and angry. I am human after all. And having to sit back and watch myself be over taken by a disease is very hard thing to watch. That is why I have learned that in order to remain hopeful and positive I have to look at the little things in life. Every sip of hot cocoa, bar of chocolate, candle light, to the sound of rain on my roof, I appreciate and bask in those kinds of things in my life. When you lose something so valuable to you, like your health, its hard not to feel sorry for yourself. It's hard not to ask "why me, what did i do to deserve this?" But now I'm starting to see the bigger picture. I would not have this disease if I could not handle it. I do have those days and even weeks when I start to feel sorry for my self, and I do get depressed. But I have to remember, I am blessed with so many wonderful things and people in my life so I cannot remain bitter all of the time. I see no problem feeling down, or upset. Sometimes one just needs to cry. It makes you feel better, at least for me it does. Emotions are what makes us human. Feelings are what make us alive. With out struggle, with out happiness, we are nothing. Every battle, every fight will only make us stronger for the next one. We have to keep pushing, we have to keep fighting, and we have to have hope. With out those things, we will dwindle away into nothingness. 

Remember, even though life can be ever so hard, upsetting and negative, you have to remind yourself of the little things. Because its the little and even simple things we take for granted in life. Health is one of them. Some people don't really even think about it. But when your health is stolen from you, or threatened you then realize how precious it can be. And when it does happen, you realize that you cannot take anything for granted. Because it can be taken away from you at any moment with out any warning. Keep you're heart open to those little things in life that you over look everyday. Smile, because you have lived to see another day.

-Little Wurmie-

Tuesday, November 27, 2012


within our weakness, is our strength. through our weakness we learn that we can battle the unthinkable. and from weakness grows something that not only inspires others, but ourselves. take you're weakness and turn it into strength. keep fighting the battles you are up against. charge forward with every breath you take. never give up on yourself. for you are stronger then you will ever realize.-Little Wurmie

The past week has not been an easy one for me. Last tuesday 11/20 I had to go to the ER because the severity of my lower back pain had become to much for me to handle. Living with RA, i've grown a high pain tolerance level. To understand what chronic pain feels like, you have to imagine living in constant, stressful, achy, stiff, swelling pain every day, all day. Every waking and sleeping moment, I am in pain. My body hurts, my hands become stiff, my knees burn, my feet sting, elbows are swollen, wrist hurts to bend, my back feels like there is a knife lodged in it, and of course the ever dreadful fatigue.  To some people they see me as a person who complains about the pain, about the suffering. But you cannot imagine what its like, unless you live with severe chronic pain or severe Rheumatoid Arthritis. 

RA is different with every person who has it. Some people can get by by taking painkillers and/or aspirin. Others use anti-inflammatory medications along with pain killers and can manage. There are also drugs known Bio-logics. you can learn more about them with that link. Biologics are given to those with moderate to severe RA and are taken with Methotrexate which is a chemo medication but is used is lighter dosages for RA. Each biologic works in its own way. But the main focus is to slow down the progression of the disease and help the person live [or at least try to] a normal life. For some, those drugs are a answer to the pain and everything that comes with it. To others like me, it becomes a check list. In a span of less then 1 year, I have been put on 3. 

Now for some a certain biologic can work for years, but for the less fortunate they only work for months or not at all. Remicade worked wonders for me for 8 months, then my body rejected it. Which is common for biologics. Then I tried Rituxin which is known to work well for people when TNF blockers like Remicade fail. But it didnt do a damn thing. Now I am taking Enbrel which is a weekly self injection TNF blocker. So far i've seen minimal results, but slowly I hope that it will work better.

Now along with my RA I am suffering from chronic back pain. According to my ER doctor my para-spinal muscles are spasming and causing severe pain in my lower and mid spine. There is no known cause for this. I had 6 shots to my lower back [three on each side of my spine] full of cortisone and local antithetic. Which worked wonders for the following 3 days. They also gave me an anti-inflammatory injection through an IV which did seem to help [before the shots were given]. At first they gave me a dose of morphine, but it didnt do anything to ease my pain. Morphine has never had any kind of effect on me. So I knew that was going to be a bust, but i figured it would be worth a shot. But after they 6 shots to the back i was feeling much better so they sent me home w some Valium and Vicodin. I do not like painkillers, nor have I ever. They dont do anything but numb my pain for a short time and do nothing to help the underlying cause. I find them rather useless. But the Valium, has seemed to help more then just relaxing my back muscles from spasming, its helped my anxiety which I am truly grateful for.

As of now, my back pain is back in full swing but it lesser then it was a week ago. The Valium is helping a lot and tonight I did have to take a little bit of the Vicodin because it was becoming unbearable to sit, stand or walk. I had my first day of physical therapy this morning and they taught me some stretches to do throughout the day to help ease my ever tightening back and muscle issues. Next week I start aquatics therapy which is known to help people with RA immensely, so i'm looking very forward to that. 

Although I deal with a lot of pain and suffering I am still thankful for what little bit of health I have, hell i'm still alive aren't I? Each day is a new challenge for me. Never knowing if I will be able to get up out of bed, how my back is going to feel, how my knees are going to be. But some how I manage to pull through it. It's not easy, i can say that for sure. But its the biggest challenge I will ever face, and I face it daily. And each day I get a little more stronger.

Some people see my willingness to talk about my RA as a weakness. As a way to complain. Everyone has there way of coping with RA. Some people do not like to openly talk about it. And that is fine. But, I for one cannot sit in silence. This is a disease that not many people know about. I am an Advocate for Rheumatoid Arthritis. Through the Arthritis Foundation and also through Arthritis National Research Foundation. It is my job to raise awareness.  I am not ashamed of my disease and what comes with it. I share my story so that others like me can have a better life knowing that they are not alone! I share my story in knowing that one day, there will be a cure. And by raising awareness, the hope for a cure is closer.  

My strength is Rheumatoid Arthritis.
My strength is knowing that I can over come my pain.
My strength is awareness.
My strength is my inspiration from others.
My strength is fighting to live another day.  

-Little Wurmie-

Monday, November 19, 2012

with every ending, becomes a new beginning.

So, today marked a day in my lifes history when my whole world was turned upside down. As i just realized what day it was. November 20. To be more exact, Nov. 20, 2010 was the real day. That was the day that I was diagnosed with Rheumatoid Arthritis. I will never forget that day, its a day that I will remember forever. One that really sticks out like my sore thumb. But it also brought in new light to my life. As i have learned over the 2 years, although it truly seems much longer then just 2 years, you cannot take simple things for granted. Ever! Because they can be ripped from you at any moment and at anytime. Maybe slowly, maybe quickly. But when it happens, you wont even be able to grasp what has happened because it happens when least expected. And maybe thats why it happens, to MAKE you listen. To make you feel. To prepare you for the next battle. I've been telling myself a lot lately that with every struggle, with every tortured step, its only preparing me for my next battle. I become stronger with every word of bad news, or every new joint affected by this dreadful disease.

This is my first post. I'm going to keep it simple. So I can get into more detail about my former battles and my future ones over my next posts. So take a trip with me. Step into a world of a small person, with a debilitating disease that is trying to take everything from her. Learn from my mistakes. Learn from my strength. But most of all listen to what is being said. Not for me, but for millions of other who suffer just like me, but are to afraid to show the world. Its not easy talking about RA, or talking about any kind of ugly disease. But some people are put into this world to STAND UP and rise above the fear of being judged or being torn down. Let me show you what a small voice can do, with just a little bit of hope in her heart!! <3

Open you're eyes, open you're heart and open you're mind!

-Little Wurmie