What Do I Really Enjoy?

Today I am writing about the things in my life that I really enjoy.  There are a lot of negatives in my life because I deal with daily pain, depression, mobility restrictions, etc.  I need to surround myself with as many positive things as I can.

One thing that I love is watching TV shows.  I love a good sitcom.  I have a close family member who believes sitcoms are horrible, useless, male-feminizing, and boring.  I disagree and feel that if there is something that’s going to make me smile, I’m going to embrace it.  When you suffer from depression, you need to find something, anything, to help you smile.

Another thing I enjoy, but with much difficulty, is gardening.  I love to take care of the plants and eating fresh produce from my garden.  I have a hard time pulling large weeds and navigating through dense plants to find the fruit, but I try to do as much as I can and as much as my kids will let me do.  I’ve been trying to teach my kids that not everybody has the ability to grow a garden and they have to buy all of their produce in a store.  The other day my daughter was eating a carrot that we had just pulled from the ground and washed off.   I told her how fun it is be able to come outside to our garden and get food to eat.  She said to me, “But we’re just in our backyard.”  Hopefully it will sink in.

The last thing I will mention today is when my kids are happy.  I still love them when they’re fussing and ornery, but it’s pretty blissful when they’re both happy.

Thanks P&G Photography for a great photo shoot

I guess my from takeaway today is find something you enjoy and hold on tight. #RABlog Week!

Riley

Exercise and RA

I used to love to be incredibly active.  I grew up on a farm with plenty of opportunities to be outside, run around, chase sheep, move sprinklers by hand, and many more awesome farm duties.  On top of that, I played all kinds of sports all year long.  I wanted to play college sports, I had a goal to run a marathon, I really enjoyed weightlifting.  I was fit and happy.

Hiking in Utah

 Running was never my favorite exercise, but I loved how good I felt afterward.  My heart, my lungs, my muscles all burned with glorious fatigue like they were thanking me for a birthday present that would magically extend their lives.  My health and fitness status changed dramatically after I was diagnosed at 17 years old.  I can remember trying to go for a jog just weeks after I got on prednisone and I was feeling almost normal.  Before I started feeling sick I could run a few miles with no issues.  That day, I could barely run 2 blocks before my knees were killing me and I was extremely fatigued. 

There are some people who don’t really enjoy running.  I kind of feel sorry for those people.  I usually pass someone out jogging when I am driving to work, and am envious.  I miss jogging and the feeling afterward. 

I don’t know how many times it can be repeated.  Exercise is beneficial for people with Rheumatoid Arthritis.  The ArthritisFoundation has this to say regarding exercise and RA.

“Research shows that exercise helps to relieve rheumatoid arthritis (RA) symptoms and improve day-to-day functioning.”

My doctors are all aware of my pains and mobility limitations.  It's impossible to jog, it hurts to walk very far, my knees don't bend well to be on a bike, I can't get up and down from the floor.  I'm a wreck.  We crossed off bike riding, yoga, walking (for long), hiking, pretty much anything they can throw at me, except swimming.  Swimming is my prescribed exercise.  Well, my arms can't do a full rotation at the shoulder, so swimming for me is more like holding onto a kickboard and kicking my legs but I usually don't go anywhere. Now my question is, when am I supposed to find time to "swim"?  I have a full time job, two kids who I miss terribly during the day, and weekends packed with household chores that I don’t have time or energy for during the week.

I’m not trying to complain.  Ok, maybe a little.  But I can sit here and read all of the information I can find about the benefits of swimming or any exercise for people suffering from RA.  Now how about someone tell me how to apply that information in my busy life so I’m not missing work, sleep, or time with my kids.

Sorry for the angry post today, but as you can see, I’m frustrated with this topic.

Till tomorrow,

Riley

5 Things...

Today, the prompt for #RABlog week is to write about 5 things I have learned while dealing with RA.

I will get right to them.

1) I’m not alone.  I have a great support system in my family and friends.  But sometimes I need to act like I’m alone.  There may be a day in my life when I don’t have somebody to lean on and I don’t want to get accustomed to having someone always be there to help me.  Whether it’s getting something from a high shelf, watering my lawn, cooking a meal when I have zero energy, opening jar lids, or even not having that shoulder to cry on.  I feel like I need to be as independent as possible for as long as possible so I don’t feel like my world is coming to an end when there is a day when everybody is on vacation.

2) I’m not the same person I was 15 years ago.  I was just telling somebody yesterday that it won’t be very long before I will have lived more years with RA than without.  RA has changed me not only physically, but my personality has changed dramatically since I was diagnosed.  I have different hobbies, different interests, a different sense of humor.  I walk differently, I talk differently, I think differently, I even write differently.  I have lost relationships because of my differences, but I have also gained relationships. 

3) Try to have a positive attitude, but don’t brush your struggles aside.  A smile, even if it’s forced or fake, can mean the world to somebody.  There have been countless times that someone has come up to me and told me how inspirational I have been to that person.  Maybe they are about to have joint replacement surgery, or they are dealing with their own chronic pain.  Maybe they are dealing with an unruly child and see my attempts at motherhood with pain.  Whatever the case may be, they don’t see me when I get home and the smile is gone because I have an ache that just won’t go away.  Or I sit down on a chair and don’t get up for 30 minutes because I’m exhausted.  They don’t need to see that side of me because it won’t do anything except bring somebody down.  I’m a Debbie Downer by nature, and I have to try extra hard to have a positive attitude.  At least from the outside.

4) I have learned a lot about the world of doctors, medicine, hospitals, medical equipment, and much more.  I don’t get upset anymore when I show up on time for a doctor’s appointment but don’t get seen for an hour or more.  When my doctor comes in, he is dedicated to me and my needs and questions.  I realize I’m not his only patient and I am happy to wait for him to give his other patients the same attention he is giving me.  I don’t know what the other patients are going through, and maybe they need some extra assurance about their condition or upcoming surgery or other medical event.

5) The last thing I will mention today is never ever turn away from our Savior, Jesus Christ.  He is there for us to lift us and help us through our trials.  There is a saying that God will never give us more trials than we can handle.  I personally don’t believe that.  I believe that he will be with us as we struggle and he will allow us to be pushed farther than we are able to bear.  But when we are pushed that far, we need to turn to him and let him know that it’s just too much and we need him to take some of the burden.  If we turn to him, he will help us in our trials.  If we turn away from him, we will be alone as we are pushed farther than what we are able handle, and that’s when terrible decisions will be made.  If you don’t believe in Christ, try to have faith in your god, or faith in hope, and trust that things will get better.  If things don’t get better, at least you will get better at handling them if you keep faith alive.

He has suffered all that we have and more. Photo source LDS.org

There are countless things I have learned while having RA.  These are just five of the things I am mentioning today. 

This has been an amazing experience to write during #RABlog week.  I have learned a lot from others who are participating.  No one is ever completely alone.  I’m glad to have met more people to reach out to.

Love,

Riley

 

#RABlog Week Day 3

It’s day three of #RABlog week.  Today we are asked to explain our RA.  It’s kind of a perfect day for this because I had a really rough night and morning. 

I found this on FB yesterday. It's so true! Sorry, I don't know the original source.

 Some people with RA or other chronic pain issues claim that their pain worsens when there is a storm coming.  I hadn’t really noticed whether or not I was affected by that because it seemed like I would have a flare for many reasons.  Too much stress, too much activity, too little activity, not enough sleep, eating the wrong food, being cold, watching a scary movie, petting a dog, changing the TV channel… Ok those last few are a bit of a stretch, but that’s kind of how I feel.  Sometimes I get a flare for what seems like no apparent reason.

Well, last night, I feel like there was a reason.  We had a rainstorm last night and I had a hard time sleeping and I woke up in a lot of pain.  It took several minutes to stretch my limbs and move my joints to be able to even stand up. My question as to whether or not the weather affects my RA was answered.  Very loudly.

I used to call Rheumatoid Arthritis the stupidest disease ever.  It causes pain in the oddest of places at the most inconvenient times with ridiculous mobility restrictions that takes a normal person and turns him/her into an incredibly awkward klutz.  As if that wasn’t enough, then a doctor will prescribe medications to weaken the immune system to try to prevent damage from the mechanisms that are supposed to keep the body healthy from harmful invasive diseases, making the body MORE susceptible to harmful invasive diseases.  Ugh, it’s exhausting.  Oh yeah, did I mention that there’s extreme fatigue to go along with it all?  And it all intensifies when there’s a storm. 

So how’s your day going?

Riley

Oh the FATIGUE!!!

As I said yesterday, fatigue is one of the hardest things about having RA.  I am ALWAYS tired! 

My three year old daughter is extremely strong willed.  Even more than a “normal” three year old would be.  She tests her mom and dad’s patience several times an hour.  Last night was particularly trying.  Let’s just say I was not displaying my best parenting moments, nor was my husband.

After an hour of trying to get her to get ready for bed, yelling, threats of discipline, rough hair brushing, tears, and screams, I was lying with my little girl in her bed, snuggling her close and explaining to her why Mom and Dad were so frustrated this evening.  I told her that we were all tired and sometimes when we are tired, we get pretty grumpy.  She agreed and told me that, yes, “at night when it’s bedtime you get grumpy, and also in the mornings when the sun is out, you are grumpy then too.” 

As much as I don’t want to admit it, she is absolutely right.  I’m grumpy in the morning, evening, afternoon, night, late night, late morning, early afternoon, all the time.  Because I’m so tired.

The prompt for today’s blog is, “How do you manage fatigue?”  Well, I don’t, really.  I just push through it to get through the day.  I guess the one thing I do, is try really hard to get a good night’s sleep.  I unfortunately have to use pharmaceuticals to help with that because, along with the normal aches and pains associated with RA, I also have Restless Leg Syndrome.  As soon as I lie down in bed and try to get comfortable, I feel tingles and twinges all throughout my body and the only way to get them to go away is to wiggle and move.  Yeah, that doesn’t work when I’m trying to fall asleep.  So now, I take more meds to deal with that.

Another thing that I do to help sleep well at night is I bought a sleep mask.  Yes, one of those goofy things that go over your eyes.  I’ve only had mine for about a month, but I have to say, It Is Awesome!  I’m naturally a very light sleeper.  I wake up to slight noises and lights and have a difficult time going back to sleep after I’ve been awakened.  The sleep mask has helped at least with the light part.  My husband and I like to watch TV right before bed (yes I’ve heard all of the tips to avoid watching TV before bed, but it works for us), and usually I am ready to turn it off and go to sleep long before he is.  The sleep mask helps block out the light from the TV and I am left with a soothing background noise to lull me to sleep.  Well, at least I can go to sleep.

I bought this one from Amazon.com

My lifestyle is quite busy, so I don’t feel like I can sit and rest very often, unless I’m at work.  When I’m at home, I feel like I need to clean and keep my house in order (which I fail at miserably, but I still try hard), take care of my kids, feed my family, and make sure my surroundings aren’t in absolute chaos.  It’s hard work, and I’m awfully tired, but I push through it knowing that my kids will grow up and become more self sufficient, and I will get to rest when I’m dead.

Riley