The Timeline

I look back now and wish it was just a few short months ago when there was hardly a sign of my Rheumatoid Arthritis. Life was manageable just a couple of months ago, and now it's overwhelming.

I had my daughter, Haley, Sept. 2007. I didn't work out during the pregnancy because I felt like crap all the time, through the whole thing. It was the first time in my life where I neglected a lot of my healthy lifestyle. I want to mention this because I gave this as an excuse for the changes that were brewing in my body.

Feb. 2008: Went to see Doctor because my wrists and shoulder joints hurt after I did certain exercises at the gym. Dr reccommended me to specialist for possible overuse, frozen shoulder syndrome, etc. My insurance didn't cover that so I ignored the problem and compensated in the gym and everyday activities by not using those areas as much. I also convinced myself that these aches were because I had been out of the gym for so long- easy excuse. This went on for a while- I ignored how weak and sometimes painful my wrists and knees were when I played with Haley on the ground. Again, I blamed it on being overweight and underexercised from the pregnancy.

July 2009: One or two of my fingers seemed to swell up on and off. My feet sometimes are swollen and hurt too, but not more than a couple times a week. I make the excuse that it's lifting Haley more and she is getting heavier. Not sleeping well either, but for no reason, not because of pain.

August 2009: I had a massage and the therapist said I had swelling in all my fingers and toes, and one knee. She said to get it checked out. I still made excuses.

September 2009: The swelling and pain in a couple of areas doesn't go away anymore so I see my Dr. She does bloodwork and it comes back positive for Rheumatoid Arthritis and Lupus. I'm scared but she explains there are more tests. More tests are done and come back as high positive for RA. Lots of Advil until I see a Rheumatologist, which took a month!!!

Mid-September 2009: The pain and swelling went from bothersome to life changing, especially at night. When at rest, joints freeze up, swell up, and get painful when you try to move at all. Almost impossible to explain the night pain. I would cry trying with all my might to turn over in bed or just lift my head. It felt like being trapped in a coffin of pain- I didn't want to move. My Dr. gave me Vicodin to sleep- it works decently- I sleep so I can't complain. I saw a Naturopathic Dr and follow all guidelines suggested, but it's been 3 weeks and nothing!!!

October 2009: I finally see a Rheumatoligist and more tests confirmed I definitely have RA. It was a long appointment; x-rays, bloodwork, and vaccinations that mostly elderly and kids get because my immune system will be depressed from the meds I am starting.

Hope In A Bottle

Doctors are very optimistic about the methods of helping people with Rheumatoid Arthritis with the current drugs available. My optimism is slighted when I read what the drugs do and the side effects. I'm also someone who hates drugs and medications- never took drugs as a youth and you could have hardly talked me into taking Tylenol for a raging headache or a sports injury.

When I found out I had RA I went straight to a Naturopathic dr, but after 3 weeks none of the reccomendations have worked- I have lost 10 pounds though so not all is bad. But I'm less optimistic about the choices I'm faced with, which is not a choice anymore. I have to releive my pain and inflamation through some scary meds that suppress my immune system along with a long list of side effects: eye damage (I have to get an eye test every 3 months, liver damage or kidney damamge(another test every 3 months), lower bone marrow and red blood cell formation, susceptible to infections like colds, flu's, staph, TB, etc.

There is hope for me in a bottle and I will be starting 3 different medications, but there is a fourth that is highly reccommended for complete therapy, but I've opted not to take it because it can cause infertility and birht defects even if I went off of it several months before conceiving. I am almost 35 and I don't want to completely give up on a having a little sibling for Haley. There is a 70% chance of my symptoms going away during pregnancy. God I hope so in my case if we decide to have another. Pregnancy lowers a woman's immunity and that's a good thing for people with RA.

Why Me God?

This isn’t the first time in my life I’ve asked this question. Sometimes I feel like I’ve gone through more than most people do in a lifetime. I keep asking why because I know there must be a lesson or something God is trying to show me. God may not want me to know his plan yet, but if I don’t find out why then it’s too easy to become angry with God.

Luckily, I’ve found lessons, and reasons, for the major hardships thus far in my life; the early deaths of 2 close friends and one boyfriend, my parent’s divorce, my dad’s sex change, 2 cancer scares, and an abusive relationship, just to name a few. On the flip side, I count my blessings often and try to learn the lessons.

Recently being diagnosed with Rheumatoid Arthritis, I have to ask "why"? I've prayed on this and the resounding answer is because I’ve always been too independent and never ask for help. “I can do it myself” has been my life’s motto when handling anything physical or emotional. I realize now that had to do with not feeling worthy of help. I’ve never asked for help because it seems like everyone else has so much on their plate, I don’t want to be a bother. Also, I don’t want to feel rejection if I ask for help and get turned away. In other words, I don’t deserve people going out of their way to help me. I hated asking for help in school too- I felt dumb. My friends from childhood are shocked that I got married because I've always been so self sufficient- I reaked of "I don't need anyone else". Although, an old friend of mine, who is coincidentally now a pastor says that things can happen, even my RA, for no reason. So there may be no lesson, it just simply may be that I have RA. I almost like this answer because it's simple and I tend to get too deep sometimes and look for something where there is nothing.

Lately, I’ve been branching out because I have to (that’s my lesson. I hear you God). I ask my husband and my mom for help on an every day basis (it's a start)- a big step for me. I’ve also felt the rejection when they can’t (or won't) help me, possibly because I need too much right now. My RA journey has made me go from 100% self-sufficient to a very meager percent.

In Sickness and Health....

"In sickness and health" is the verbal promise when we get married, but there is a silent and ugly caveat to that promise that lurks inside, perhaps, many of us. It goes like this: In sickness- when it's convenient, not untimely, and can't interfere with other expectations of you. Such as, you can be sick or ill, but it must not interfere with taking care of the children or other duties, even working outside the home.

When I worked in restaurants, the bosses would practically chant "I don't care what is going on with you in your life, just leave it at home and put your game face on." Same thing in a marriage- there is a status quo that is secretly supposed to be be intact. You may think you've been through a lot with your spouse, but having kids, difficult job, and deaths in the family, etc. are escapable, and eventually end. Your spouse knows how to react to those things- comfort or argue when needed. In my case right now, I need more than my spouse can give and it effects that status quo balance.

I am at the very beginning of my journey with Rheumatoid Arthritis (RA) and already it has taken it's toll on my marriage. Let me explain...my husband has always been the injured one; he's had 3 knee surgeries and 2 other surgeries since I've been with him. It's always been me taking care of him. The tables have turned- our roles have been reversed. I am the one in pain, and a lot of it. This isn't an easy or obvious task for my spouse to take on.

The bum deal about RA is you can't see it. You can only see what I let you, meaning I can kind of hide it, but I'll be in a lot of pain doing it. Otherwise, I sometimes walk, more like shuffle, around like an old person. Sometimes I limp to ease the walking on my joints and people just think I am injured, not something worse like a prematurely old body. If you get close, you will notice my fingers and feet, and other joints are so swollen they look recently broken.

It's hard for my spouse, or anyone else, to care for someone who isn't visibly deformed or handicapped. I understand, but it still hurts emotionally. The other day my husband and I were late for a movie and walking through the parking lot, he says "You can't walk any faster than that?" I don't think he intentionally meant to hurt my feelings. Sometimes he thinks I'm lazy when I don't get all the chores done, but I have never been lazy in my entire life, not even close.

There is resentment on my side too. My husband smokes, never exercises, and eats horrible, but I know that if he got a lifestyle related disease he would expect me to care for him- and he should, and I would. But I have a non-lifestyle illness for life that I did not inflict upon myself, and the care isn't there. RA is random and doesn't matter how healthy a person is, it strikes.

My husband is frustrated at how many little things I now need help with. The only task he really enjoys is undressing me at night- a luxury for both of us. And yes, undressing and dressing is really hard for me. I'm sure my husband is thankful I can wipe my own ass though.

My Little Inspiration

My nickname for my 2 yr old daughter, Haley, has always been “Little”. It may sound odd, but now it has meaning to me; my little inspiration.

I will be crying my eyes out while writing this entry. Haley is the best thing in my life right now and it makes me emotional just thinking about her. I think of all the things I can’t do with her anymore and it breaks my heart. She is a very physical girl and I’m not able to run around with her, take her to the park, or even lift her without killing my joints for the day. She doesn’t understand yet what‘s going on with her mom and I hate not being able to explain it to her so she doesn’t feel one ounce of rejection from me.

Not too long ago, we considered breaking the habit of her sleeping in our room, but after the pain of my RA became excruciating for me at night, I realized I couldn’t get through the night without being able to look over at her sleeping. It gives me a reason to get through the night and just barely diffuse the pain.

Just the other night we were snuggling in bed and I was about to read a story to her, but I was having problems just lifting my pillow into place and pulling the covers up- because of the RA it's hard to pull, lift, or grasp anything no matter small and inconsequential (a pillow can feel like a ton). My Little was watching me and blurted out "I'm proud of you" and smiled at me. I realized she probably didn't know exactly what that meant other than I was struggling with something, but doing my best to do it anyway. I should be proud of me- I awlways try do to what I can even if it's painful.

Their Defnition of Rheumatoid Arthritis

WHAT:
Rheumatoid arthritis (RA) is a long-term disease that leads to inflammation of the joints and surrounding tissues. It can also affect other organs. There is no cure, only methods and medications to releive symptoms and hopefully major joint deformation.
Fatigue
Loss of appetite
Morning stiffness (lasting more than 1 hour)
Widespread muscle aches
Weakness
WHY:
The cause of RA is unknown. It is considered an autoimmune disease. The body's immune system normally fights off foreign substances, like viruses. But in an autoimmune disease, the immune system confuses healthy tissue for foreign substances. As a result, the body attacks itself.


WHERE:
Eventually, joint pain appears. When the joint is not used for a while, it can become warm, tender, and stiff. When the lining of the joint becomes inflamed, it gives off more fluid and the joint becomes swollen. Joint pain is often felt on both sides of the body, and may affect the fingers, wrists, elbows, shoulders, hips, knees, ankles, toes, and neck.

WHO:
2 million people in this country are effected by RA; much more common in women than men. Women ages 25-50, mostly childbearing years.

My Definition of Rheumatoid Arthritis

My personal definition: Being 34 and feeling 80- I’m not kidding or exaggerating. My mom, who is 63 and disabled, can do more than I can on most days.

I’ve always been an active person and people who know me, know that I’ve always taken care of myself health wise so Rheumatoid Arthritis (RA) has changed the definition of who I am. Basically, I’ve got to invent a new definition of myself- who am I now? I’m not who I used to be, and the pain, well, pain changes a person.

I guess my personal definition of RA changes on a daily basis when I wake up in the morning and survey the damage- Can I get out of bed quickly or is it a slow-start day? Can I eat or is my jaw too swollen that day? Can I drive or are my hands too painful, or worse, can I even get my daughter in her car seat (that is the most painful, emotionally and physically). Every day I have to assess what joints are painful and swollen and that’s how I determine what I can do that day. If it's a bad day, I try to stay positive and in my bathrobe.