Living with RA

Mt Baker (2)

This picture has nothing to do with RA but this weekend we got to house sit for my brother and sister-in-law. This picture was taken from the back yard. Beauty took it early Sunday morning. She spent the night with us and woke up early. She grabbed my phone and took this picture. It was a great surprise when I woke up. One of the local coffee shops is having a photo contest and it was suggested that I submit this for it. I did but got an email back saying they needed a higher resolution copy. Unfortunately, I don’t have one. Oh well, I like the picture anyway. Those of you who are Facebook friends have already seen it but I just love it so thought I’d share here too!

I’ve mentioned before that I have Rheumatoid Arthritis. I was diagnosed in February 2006. I had spent a year with what I called “The Amazing Traveling Pulled Muscle”! I was at the doctor nearly once a week with pain in a different location every time. The first was my right shoulder. My brother, Beauty and I made a quick trip for my uncle’s memorial service. A very quick trip. We were gone a total of 20 hours and about 15 of that was spent driving. I went to work the next day and couldn’t lift my right arm. My shoulder felt like someone was stabbing me with a red hot poker right in my shoulder joint. Any movement at all was excruciatingly painful. That was the first time I went to the doctor and was told “You have a pulled muscle. Here, have some narcotics!” They didn’t work. Three days later I was sitting at work and watched my left hand swell up and turn red. My left arm started hurting as well. You may recall that my dad died when I was 12? He had a massive heart attack. My mom? She’s had 3 open heart surgeries and a mild heart attack. Pain radiating down my left arm? You can bet I headed for the ER. Interestingly enough they didn’t even check anything with my heart! They ended up telling me “You have a pulled muscle” and giving me more narcotics. Really? And we wonder why so many people are addicted to pain pills???

Over the course of the next year, like I said, I was at the doctor multiple times only to be told that I had a pulled muscle. Finally after doing some research on my own I called and asked for a referral to a Rheumatologist. I ended up going in to my doctor’s office but saw a different doctor who FINALLY ordered lab work! Yes, I had been in this much pain for a year and my doctor never even did any labs! The very last time I saw the man who kept blowing off my very real pain he actually said to me “I got you in here on an emergency appointment. I don’t have time for this.”!!! Needless to say, that was the very last time I saw him. He’s still practicing. He’s even in the same office my girls and I still go to. But I’ve made it VERY clear that none of us will EVER see him again. I would rather take my chances at spending 12 hours in the ER than see him again. Lucky for us we now have an AMAZING primary doctor who actually listens and seems to genuinely care about what is going on with us. I was able to get in with a Rheumatologist that I really like. He understands that I haven’t had insurance for the last couple of years so he works with me for my appointments. He also has been instrumental in helping me get the most expensive of my medications ($2400 a month?!?!?) for no cost.

Now, 6 years after my initial diagnosis and 7 years after the onset of my symptoms, my life is mostly normal. Yeah, I have to take it easy some days and the cold generally hurts. Now that I’ve been on this most recent medication my flares are not as frequent (maybe 1 a month unless I completely overdo it) and aren’t nearly as severe as they were. When this first started I didn’t know how I could live my life with this horrible disease. Now I know I just do. Yes, it’s still horrible but I’ve learned that my body has certain limitations and as long as I remember that, I do ok. I have been blessed with a great job where it’s not overly stressful on me (which causes flares really bad!) and it’s physically not a difficult job. My last job before this was at a big box store and I walked 6-8 miles every single day.

Interestingly enough when I started writing this I was feeling great. This morning I woke up and could barely open my mouth because I’m having a flare in my jaw. Let me just tell you how much fun THAT is! If you have ever suffered from TMJ this is pretty similar. I can’t open my mouth all the way and I can’t bite down all the way. Makes eating interesting for sure! Today was the busiest day of the week at work and all I wanted was to take a nap! That’s what happens when I take my meds before work. Luckily I don’t get all of the common side effects associated with Chemo medicine, mostly because I take such a low dose. I just put a reminder in my phone to take meds on Friday night or Saturday morning so this doesn’t happen again. We’ll see how that works…

But you’re so strong!

Recently someone told me that they thought I am a very strong person. Not the “I can lift a car” kind of strong either. That made me think. Am I really strong? Honestly, I don’t think so. I just do what has to be done. I don’t have a lot of time to sit and cry about things and wait for someone to come rescue me. You see, I’ve been a single mother for 19 years. I know that might night make sense to you given that I have 2 children and the oldest one is the 19 yr old.

Lets see if I can help make some sense of that statement.

When Beauty was born, her father and I had been together for about 2 years. When she was about 3 months old, he left. His loss. He lost out on the most amazing thing I have ever experienced. When Beauty was 5 I met someone and ended up getting pregnant. We weren’t “together” when I was pregnant but after she was born I decided to give it a chance with him. It lasted less than 6 months. To be fair, that wasn’t all his fault. I just didn’t love him the way I thought I should love the person I was planning to spend the rest of my life with. So I broke off the relationship and took my own path. I knew it would be hard but I had to do what I believed was the right thing for myself and my children.

So that’s the cliff notes version. Hope it helps.

Was it my strength that made that decision? I don’t think so. I just knew that I couldn’t live the rest of my life feeling the way that I did. MiniMe’s father now has a baby with another woman and I’m happy for them. I wish them all the best and we love that baby because she is part of our family too.

My amazing brothers have tried to be positive male role models for my girls. For this, I can never thank them enough. When the girls were little they would make “Uncle’s Day” cards for my oldest brother because for all intents and purposes, he was the main father figure in their lives. I don’t know what I would do without my family. They may not agree with all of my choices but they still give me love and support no matter what.

When I was 12, my dad died. I’ve posted about that before. I survived because I didn’t have a choice. I just did what came next. I could have chosen to spend the rest of my life making a long string of dangerous choices and using that as an excuse. I chose not to. I may not be proud of all of the things I’ve done but I like to think that my dad would be proud of who I am today. Does that make me strong? Maybe. Or maybe I just did what came next.

Six years ago I was diagnosed with Rheumatoid Arthritis. I had no idea what was going on with my body. I could hardly move most days and was in so much pain that I would just lay in my bed and cry. I started doing some research online and reading stories of other people who had RA and ended up in the worst depression of my life. Seriously, 90% of the stories I read were about how debilitating this disease was and long lists of things these people couldn’t do anymore! I ended up quitting my job and spent weeks crying over my sad life and the supposed death sentence I had just been handed. But I had one person in my corner rooting for me. Some of you will know who he is but Mister J probably saved my life. I know for certain he saved my sanity! Mister J is someone I’ve known more than half my life. We went to high school together. He’s a great friend, an amazing dad to his 2 girls and a great man. He pretty much told me that I needed to stop crying, get out of bed, go to the doctor, and do what comes next. And stop reading those people’s stories! He was right! I went back to the doctor and insisted on more bloodwork and a referral to a specialist. I got them. Six years later, I still have pain but through some amazing people who I will never meet in person, I am functioning and living my life! Since that time I have graduated from college and landed an amazing job! Does that make me strong? Again, I don’t think so. I had a great friend in my corner who helped me more than he will ever know. I just did what came next.

I could spend my days wallowing in self-pity for all the things I don’t have but where would that get me?

I chose to live each day as best I can and just do what comes next.