For the last week, I have desperately been trying to blog, and I cannot seem to put anything that is on my mind in writing. I think, for the most part, I am struggling with issues that have come in my life as result of living with an autoimmune disease that causes me to live with chronic pain everyday of my life. My blog is my outlet for dealing with that and understanding is something that most “normal” people in my life cannot offer. I look at the comments of those who read my blog, and I understand that I AM NOT ALONE when it comes to this disease or any invisible disease. I have made it a point to reach out to those of you who are struggling with this disease because I know that when I hit my low points that kind words make all the difference in the world.

I guess, if anything, I know that having RA and FMS have changed me in both bad and good ways. At the same time, I have become numb and sometimes, my lack of sympathy is not something I am not proud of.  Sometimes, I just want to feel something (compassion, love, hate, etc.) and it is getting harder and harder everyday.  I used look at the world optimistically and I believed that small gestures could change the world. Now, I am just glad that my children have a roof over their heads. I used to care about things like charity work, small gestures to make someone’s day better, and even keeping a smile on so as to promote a positive outlook for others. There are two quotes on my blog that I live my life by and more and more these days, I find I have to remind myself.

LIFE IS TOO SHORT

Life is too short to wake up in the morning with regrets. So love the people who treat you right, forget about the ones who don’t, and believe that everything happens for a reason. If you get a chance, take it. If it changes your life, let it. Nobody said it would be easy, they just promised it would be worth it.

THE LAW OF THE GARBAGE TRUCK

“Many people are like garbage trucks. They run around full of garbage, full of frustration, full of anger, and full of disappointment. As their garbage piles up, they look for a place to dump it. And if you let them, they’ll dump it on you. So when someone wants to dump on you, don’t take it personally. Just smile, wave, wish them well, and move on. Believe me. You’ll be happier.” David J. Pollay

I am constantly reminding myself that “life is too short” and that I am not a garbage truck and I refused to let garbage trucks ruin my day or my life. It can be hard sometimes to stick to those quotes when people don’t understand how sick you are. I find myself telling them “I get to be sick everyday for the rest of my life. You get your health.” Maybe I am wrong for taking that stance but people shouldn’t take their health for granted or somehow assume that people with invisible conditions are somehow “lazy.” I know that I am not lazy but on my bad days, I am entitled to be.

I am no stranger to toughness and nor am I a stranger to difficulties. I have always been a tough person and I have always forced myself to be tough through the worst of storms. For a long time in my life, I knew that getting through a crisis meant getting up when you fall down, and it meant getting up right away. With RA, I don’t always have the strength to get up right away. In the beginning, I did. Then my health got worse, and it was harder to get up right away. These days, I need time to feel sorry for myself because I eventually do get up, not right away, but I do.

The Arthritis Foundation says that 1.3 million Americans live with RA and 70% of those are women. Many women who stricken are as young as 20, and many are mothers. I don’t really know my heritage line when it comes to RA, but my mother tells me that her father had rheumatoid arthritis. I have never watched anyone struggle with a chronic pain condition so for me, my life is like a movie playing in slow motion.

If anything scares me the most, it is the fact that my children watch me struggle with this disease. It is for them I get up when I fall. Sometimes I worry about the complications of living with this disease and it scares to think that my kids could lose me because of RA. That is another reason I fight. My kids are entitled to a mother, healthy or not, who will be around for a long time.

I was very active before RA, and now I am lucky to just to be able to run after my kids. I keep praying for remission, for strength and for guidance. Mostly, I pray for the courage to find the strength to be tough. It is not always easy, but so many people in my life tell me that I do it in seemingly easy manner. I have to remind them that they do not know what it takes to make it look so easy.

My husband thinks that my accepting this disease means I have given up. See, part of having this disease means that you are fighting a battle every single day and accepting only means that you’ve stopped grieving for your misfortune. It also takes a lot of energy and emotional strength to fight.

For anyone who sees a family member struggling with a chronic pain condition, the only advice I can offer is to learn more about the disease. Knowledge is power and the more you know, the easier living with this disease is. Emotions play a big part because watching someone struggle takes a lot of empathy, and it does not come natural for everyone. In my life, the two people who try to get what I am going through are my sisters. My husband and my mom – they don’t quite understand but I have faith that they eventually will.

My fears about this disease sometimes cripple me emotionally. Crying is hard for me these days. I am too numb to cry and sometimes, I am too numb to care. When you grieve for so long, you eventually stop grieving. I hope that I have not become a cruel person, but I used to turn on the waterworks on over the silliest things, and now, I have very little sympathy for the world. I have learned that that is what it takes to find the strength to be tough. I don’t have time to sweat the small stuff.

I am one of those people who tries to maintain an optimistic composure even and especially when it comes to having rheumatoid arthritis. However, lately my RA has a mind of its own, and for whatever reason, it has taken attack to my hands. This is frustrating and has left me a bit depressed.

First of all, I am a legal assistant and what I do for a living is type, and with the problems I have been having with my hands, I am not sure how long I will be able to continue working in my current position. Second, my husband is in management so he works all the time, and he is usually not home when I am preparing meals and doing other household chores in the evening. Basically, I have no one to ask for help when it comes to things that require hand precision. I ask my ten year old for help, but there are things I would prefer not asking him for help in, i.e., using a knife.

Some mornings, like this morning, I wake up with my hands curled up. I literally have to pry them apart to get them apart and it is very difficult to keep from dropping things when my hands are acting like this. This morning, I could barely hold my toothbrush. It is worse in the morning, but I still have problems doing the day. For example, the other day, I tried to tighten some screws in the hinges of a closet door. Needless to say, I did not have any luck. I became so frustrated with my hands that I started to cry.

The next time I see my rheumatologist I will be discussing the issues that I have been having with my hands. Despite my current treatment regime, I am still having pain and swelling in my hands more than in any of my other joints. Second, I have pain when bending or straightening my fingers. I have also have numbness, tingling and cramping. It is like my hands have a mind of their own, like they are possessed or something. Sometimes, they are stiff or they lock up.

I am looking at arthritis gloves and hoping that by using them, maybe it will slow down the degeneration in my hands. Even though my rheumy insists that my typing for a living is not damaging my joints, a part of me wonders if she is wrong. The one thing that I have forced myself to believe is that RA cannot stop me from living my life, but at some point, I will be wrong, and I wish it wasn’t my hands that were paying the price.

The malaise fairy paid me a visit today, as did the pain troll. My feet and my toes feel like someone ran them over with a big monster truck. Needless to say, I have not been pleasant company. It took me four hours to clean my living room and kitchen today due to a lack of energy. It took my toddler and tween twenty minutes to tear apart both rooms. For someone who hates stopping and can’t sit still, today was a simply a waste of a day. Now, at 11:30 p.m., it is hard to fall asleep because the pain and the extreme exhaustion aren’t allowing me to sleep.

RA and FMS definitely make for an uncomfortable day and life. I find that my bad days are my most vulnerable days. There are the days when I break down in tears easily and turn into a raging mad woman. Expect for telling my boys repeatedly to “calm down” and to “sit still,” I think I did pretty good. Oh yes, and I yelled at my husband for being so lazy. Otherwise, I think I kept my cool. I even managed to get out of the house briefly and get some things from the store, in slow motion of course. It was like watching a movie in slow motion. I needed to get some fresh air and being coped up in the house wasn’t pleasant for me or the boys.

Well, hopefully tomorrow is better. One thing I have learned about my conditions is that patience is a virtue. Stress turns into flare-ups so I don’t plan on making myself worse on a day like today. I think taking it easy is best solution on a day like today.

Now, if I could keep the malaise fairy and the pain troll away. You think a Brinks home security system might help?

For anyone who is diagnosed with a chronic condition, the decision to slow down is one that can be emotional. It is a gradual process, but you eventually find your comfort zone and make the best of it.

Living with Rheumatoid Arthritis has forced me to make changes in both my personal and professional life. I was the type of person who was running 100 miles per hour in multiple directions. Between my family, my job, my education, and even volunteering, I had my hands full. Then, RA sent me to a screeching halt. I had to learn the hard way what it meant to be burnt out. I had to learn what it meant to break commitments due to my health. I had to learn that not everyone in my life would understand. I had to learn how to ask for help. I had to learn to accept what I could not control.

I wasn’t supermom nor was I perfect mom, even though I tried to be all those things until it wore me down. If anything, I did not have time for RA in my already hectic life nor did I have time to ignore it. I have had to make changes to my lifestyle, which involved staying active, stressing less, eating healthy, taking my meds, etc., all in an effort to relieve my symptoms and keep them from getting worse. I learned that a healthy lifestyle was the only recourse I had against fighting RA and diseases that are a result of having RA.

I discovered that having RA meant slowing down. I had to stop stressing myself about being the best at everything. I often joke how I am my biggest critic. I used to think that being my biggest critic was a good thing because it forced me to push myself to be better. Because of RA, I learned, one day at a time, I didn’t always have to be constantly trying to be successful in my career, at motherhood, preparing my children for the future, having a clean house, helping out anyone and everyone who asked for help, and anything else that I though I needed to be the best at. It took RA to make me realize I didn’t have to be the best at everything.

I look at having RA and FMS as just another part of my life, a part that I have to be successful in. I am not saying that I don’t have my moments (I have pity parties more often than I would like to), but RA has definitely forced me to slow down. RA forced me to stop and smell the roses and if anything, it has been a reality check. I try not to stress so much about things I have no control over, I rest when I am tired, and I take care of myself by protecting my joints, exercising on my good days and stretching on my bad ones, and eating healthy.

The people who read my blog have noticed the stance I have taken against RA, and I am glad that it has been a positive one. I often joke that my life’s experiences prepared me for RA. Needless to say, it is a journey of self-discovery and one I never expected would change me so much. I am in the process of making some other lifestyle changes on a professional level and for the first time in my life, I am content with the person I am and that I have become, and if it wasn’t for RA, I don’t think I would have found that person.

The Beginning

For as long as I can remember, I have been sick, never “normal.” I remember, as a child, my mother took me from doctor to doctor trying to figure out what was wrong with me because I never really felt healthy. The doctors always told my mother that I needed to eat better and take vitamins and my mother did the best she could to heed the doctors’ advice.

When I got older, I had many horrible winters where my muscles and my joints ached because of the cold weather. I also was sick all the time, not really sick, but sick enough that life was always difficult. In my preteen years, the doctors told my parents that my sickness had to be related to anxiety and then later in my teen years, I was told it was all in my head. This was too much for my mother who did not believe that it was in all my head so she gave up and hoped that whatever was wrong with me would somehow work itself out when I got older.

In my 20s, I battled the medical community alone trying to figure out what was wrong with me. Some doctors tried to diagnose my symptoms while others told me it was all my head. After my diagnosis two years ago, the first person I told was my mother. I remember the look in her eyes when I told her. It was a look of relief because if anyone believed in me, it was her. My mother and I have never seen eye-to-eye on anything, but she was the only person who really believed that my illness was not in my head. I remember her arguments with my doctors who insisted that I needed to see therapists and psychologists because there was no explanation to how I was feeling.

My mom, for all her flaws and all our disagreements, was the only one who understood how sick I was and that it wasn’t all in my head. My first marriage ended because my ex-husband never understood and I had many failed relationships and friendships because there were so many people in my life who never understood.

Normalcy

At some level, I have never known what “normal” is. I have never lived day without the reminder of my invisible conditions. Even today, with treatment and medication, I don’t feel so-called normal. I have a headache at least once a week and it usually lasts several days. I feel tired most of the time no matter how much sleep I get. The dizziness, weakness, and that feeling of “not feeling right” follow me everywhere, and the pain, of course, that is a whole different story.

For so-called “normal” people, there is this belief that if someone struggling with an invisible disease gets out bed everyday, then they are doing well. However, for someone who has never known “normal”, the belief that staying in my bed will somehow make me better means that I would never leave my bedroom and I would miss out on life. So, I get out of bed everyday despite how much of a struggle it can be, and I live my life, like every “normal person,” or anyone with an invisible condition, does.

My normal

As a person who does not know “normal,” there are times where I just want to live a normal life, but at the same time, I still want the people in my life to acknowledge my pain. I have never really known what “normal” is, and if anything, this is my normal. Just because I suffer from two invisible conditions doesn’t mean that my life has suddenly stopped. I walk alongside with my conditions and sometimes, they stop me or limit me, but they don’t dictate my life or my decisions.

Since my diagnosis, I went on to pursue my master’s degree despite my already busy life. I am always asked how I do it all. Many of the people who ask won’t even know that I have RA and FMS. Could you image the reaction if they knew that in addition to my already busy life, I suffer from two chronic pain conditions? Honestly, I have my moments where the pain, the fatigue and the exhaustion takes a toll on me and sometimes on my family. Those are the times where I turn into a raging mad woman. (That happens at least once a month.) The fact that my family is slowing learning to understand my conditions is the only saving Grace I have.

I may not know what “normal” is, but I know what my normal is. I suppose, if anything, my “normal” helps me make through everyday.