I am glad I got to experience that

Have you ever looked back on your life and thought, wow, I'm glad I got to experience that? I have, especially now that there is so much I might not get to experience. I truly am so thankful for my life, even though I now have RA, I still remain very thankful.

I am glad I've experienced so much already and look forward to whatever things I still have to experience. I also mourn for the things I'm missing or know that I'm going to miss out on. That is how RA changes your life. It steals your independence, your mobility, your freedom to just come and go so easily.

I'm going to share with you what my days were like before RA and what they are like now Living with RA. I don't want pity, sympathy or anything like that ... I want to educate people to help raise awareness and understanding. Living with a debilitating, deforming and chronically painful disease is hard enough as it is, but the uninformed comments and misconceptions I often hear coming from others is painful as well. Other than the disfigurements you might be able to see on my body, RA is unseen. You can not visibly see the excruciating pain I am feeling in my jaw, neck, shoulders, elbows, wrists, fingers, hips, back, knees, ankles and toes. You can not see how my shoulders or hips are 'locked up' and don't want to move. You can not see the extreme fatigue I feel. I may outwardly look fine to you, but believe me, I am not fine.

Let's go back 3 or 4 years ago (2006/07) when I was running around like a Spring Chicken full of energy and life!! I would get up at 5 a.m. and hop in the shower, get myself ready and then get the kiddos up. Four kids with 4 different schools/places to go!! I had one going to one High School close to home, another going to an IB High School across town, another going to middle school and the youngest in elementary. They all had extracurricular activities or events to attend, one was in JROTC, the other in Band, one in Chorus and one in plays and programs at school. Whew, that sounds so exhausting now :) I sure do miss those days!!

I got to work about 6:45 and worked until 5:30 M-F and 12:30 on Saturdays. I was an Assistant Manager for a local paint store and loved my job. I could carry a five gallon bucket of paint in each hand, lift those same buckets up as high as my chin and or pull them down from that same height with such ease. It was a very physical job that kept me in shape. As I was leaving this field of work, I knew I felt tired all the time and I would get so stiff during the ride home from work. I could barely get out of my car and then limped into the house. But I kept on truckin'.

I did all the errands and bill paying back then too. I got all the groceries without assistance and I ran the kids to all their events most of the time. I was always on the go. I had a social life hanging out with my husband and friends, going places with my kids, going to the flea market, company parties and dancing. I am so glad I got to experience all of that.

Now it's August 2010, just 2 years after I was diagnosed with RA. My mornings, days, my entire life are different. Some of you might want to get the Kleenex if you haven't done so already. It is not my intention to make you cry, but you might.

If I've had any sleep at all the night before, I usually wake up around 4 a.m. with my hubby so that I can have a few quiet minutes alone with him. On a bad day he will usually have to help me to sit up, watch me cry and get used to that position, then gently put his arms around me to help me stand up. I cry again. Once I get stable on my feet he then helps me get to the bathroom, pull down my clothes and sets me down on the toilet. I cry again. He then puts his arms around me again to help me stand up, pull up my clothes and hear me cry out again. He then walks me back to the bed and helps me sit down and then pulls my legs back up into the bed while pivoting me to lie me down. I cry again. He has to help me adjust my pillow and pull my blanket over me, my hands hurt so bad I can not bear to touch anything with them. I cry again. The pain is unbearable.

Some nights I sleep in spurts or not at all. Either the pain is so throbbing and intense I can't sleep or I doze for short periods lasting no more than an hour or two. I have to depend on everyone else for just about everything. I need help to get up, go to the bathroom, getting back into bed, for food and drinks, to brush my hair and to dress myself. Those are those days I dread the most. I don't like having to ask anyone to help me take care of myself.

On a 'good' day, after maneuvering myself in a similar fashion as to a 3-point turn, I have to 'rock' my legs to get the momentum to set up. I can't use my elbows or forearms to lift myself thanks to all the Rheumatoid Nodules on them or my wrists or hands to push myself up because of the pain and I just don't have any strength in them. After I get myself set up I slowly try to stand. I never know what my knees, ankles or feet are up for until that very moment. If all goes well I scoot to the bathroom because my ankles are stiff and don't want to 'cooperate', as I usually say. I do have a six inch toilet seat riser so that I don't have to 'fall' down onto the toilet. I scoot back to the bed and get out my NSaids and pain pills. I lie back down for a while waiting on the pain to become somewhat more tolerable, if there is such a thing.

On these 'good' days I might try to put a load of laundry in. That is about all I get done because I usually need someone to pull the heavy wet clothes out and into the dryer and then get them out of the dryer because I can't get down into there myself. If I do actually fold a load of clothes I'm so exhausted afterwards I feel like I just ran a marathon or something. The fatigue wins out and I have to take a nap.

If I do venture out it is usually to the Dr., the pharmacy and maybe the grocery store. I usually have someone drive me as I don't feel strong enough or safe enough most of the time to handle a moving vehicle. I also need someone to go into the grocery store with me. Although I am able to use the electric carts while grocery shopping I am unable to reach some items (shoulders won't let me) or lift some items. I can't lift a gallon of milk to put into my cart and two liters are quite heavy and awkward too. All of that is exhausting and usually requires a nap afterward too.

Just sitting here typing this blog up is wearing me out. My fingers hurt, my wrists are screaming at me and my back and hips aren't too happy about sitting here this long. I know I will pay for this tonight and into tomorrow, but I had this overwhelming need to get this done and posted. I am glad I got to experience this moment. Sometimes the mind won't shut off until I either write something down or type it up. As long as I can, I will continue to write and blog ... it's my own outlet from RA. It is the last bit of me I can still fight with, my mind, it still works fine like a well oiled machine!!

Yes, I am truly glad I got to experience the life I have and even the moments like this where I feel a sense of accomplishment.

{Pain Free Hugs} to All :)