The Beginning

I’ve been writing on this blog for a few weeks now, maybe I should tell you a little bit about myself before I get too carried away.  Umm, by the way, ignore the dates on some of these photos.  Someone didn't see it necessary to change the date on the camera :)

I was raised on a farm.  I grew up a tractor-driving, calf-throwing, sprinkler-moving, thistle-spraying farmgirl.  I’m the youngest of five hard-working, athletic kids (1 boy and 4 girls) who were all extremely active.  All of my siblings, their spouses and kids, my husband and girls are all still extremely active.  Except me…

 

My brother was the oldest, so obviously he was the first to leave home.  For several years, it was just us girls helping out on the farm.  My dad was always so proud of his tough, athletic, farm girls.  He would tell people, “I would put my girls up against any one of these in the valley, no problem.”  And I understand his confidence.  All summer, every summer, we were moving sprinklers (no pivots, just handlines and wheellines), cutting and baling hay, herding livestock, walking EVERYWHERE, spraying or digging weeds, and many other jobs that needed doing.  In the winter, we got bundled up and drove tractors, moved hay bales, fed livestock in the corrals, mucked out the sheds, and so much more.  I guess we were pretty tough.  On top of working on the farm, we all loved sports.

Starting in elementary school and continuing in junior high and high school, I played a lot of sports.  I was on championship little league softball and basketball teams, played volleyball as soon as I could, and tried a season of soccer.  I seemed to get seriously hurt or sick about every other year of playing sports and had to sit out part of a season  Beginning with 5^th grade, I had to miss part of my little league basketball season because I had Scarlett Fever.  Sixth grade sports were great.  In 7^th grade, I (or rather my sister) broke my arm, again, right in the middle of little league basketball.  After a couple of weeks off, they just wrapped a bunch of ace bandages around my cast so I didn’t injure anyone with my injury, and I went on playing.  Eighth grade, fantastic!  Well, not quite.  I did break my nose at the last softball game.  At least I didn’t have to sit out J  In ninth grade, I sprained my ankle during a basketball game and sat on the bench for a couple of weeks.  Tenth and eleventh grade were a bit different…

At my high school, volleyball was played in fall, basketball in winter, and we ended the year with softball in spring, all of which I played.  Every year, school athletes were required to get a sports physical.  As I was at one, my doctor noticed an inflamed gland near my throat that concerned her.  She wanted me to get an ultrasound to see if it looked like something that needed further attention.  It must not have been anything too bad because I don’t remember hearing any more about it.  Come to find out, swollen glands or lymph nodes are common in RA patients.  That was my earliest sign/symptom of RA.

I pretty much forgot about the swollen lymph node for a few years.  But other things started happening.  In 10^th grade, I sat out the last few weeks of softball season due to extreme pain in my side and shoulder.  I was a pitcher, so I thought I strained something and needed rest.  Well, after a summer of rest I started volleyball again.  I really loved playing volleyball.  But again, after a couple of months, I was experiencing a lot of pain in my shoulder and back.  I tried to push myself to do the best I could do in sports, but I don’t feel like I ever pushed so hard as to injure myself. 

10th grade after sitting on the bench already for a couple of weeks

I can remember one day of practice, I had some pretty intense pain in my shoulder and lower back that was completely exhausting me.  I was trying to be tough and push through the pain.  I hadn’t done anything more strenuous than normal and I didn’t understand where this pain was coming from.  We just finished one particular drill that ended with a sprawl on the court, and then the coach dismissed us to go get a drink.  I could hardly move I was in so much pain.  Everyone left the gym to get a drink and I just laid on the floor for a minute.  Finally I rolled over and got up to get some water.  After practice, I look at myself in the mirror, trying to figure out what I had done that would leave me in such agony that I couldn’t finish a two-hour volleyball practice.  I knew if I went to Coach, she would bench me for yet, another half of a sports season.  I was so tired of that, but I was in such terrible pain, I didn’t feel I had a choice.  I asked my coach about it and she suggested I see a sports medicine specialist.

After an appointment and some x-rays, all he could determine was that I had a curvature in my spine, probably due to carrying a heavy backpack on one shoulder, but nothing that hinted to the reason I was in such pain.  I sat out the rest of the season and decided that my sports career was probably over at that point.  I was so frustrated about not being able to play and enjoy the sports I loved so much.  I was baffled at these aches and pains I was experiencing.  I was asking, “why me?” a lot.  My friends and siblings didn’t have problems like these.  Why me?

My dad gave me a pep talk that ended with the question, “how about early graduation?”  I hadn’t considered graduating from high school early, but with all of the sports and other extracurricular activities I did, I almost had enough credits.  He told me that he really enjoyed watching me play sports and if I couldn’t do those, what was the point in sticking around?  He took me to the school counselor and we determined I needed 3 ¼ credits to graduate by the end of my junior year.  I enrolled in an online concurrent English class through a local university which gave me 3 credits, and I joined stage crew for a quarter.  Was it really that easy?  I took the ACT, got accepted to a local university, finished the last few quarters of school and walked the walk with  the senior class.  Again, was it really that easy? 

By that time, I wasn’t experiencing any odd pains.  That season of volleyball almost seemed like a fluke accident.  But I had already made my decision.

One of the things I needed when I was applying to college was a letter of recommendation.  I asked my volleyball coach for one.  But, I didn’t tell her why.  When I went to pick the letter up from her, she asked me what I was going to use it for.  I told her that I was planning to graduate early and wanted a letter of recommendation to include in my college application.  She got a bit upset about that news.  She told me that she thought I was making a big mistake by missing my senior year and I would regret it.  I don’t think she was trying to be mean or hurtful.  I felt a lot of love and concern from her.  I don’t want to tell her that she was wrong and I don’t regret it, but I feel confident that I made the right decision.  There are so many things that happened to me and positive choices I was able to make as a direct result of my decision to graduate early from high school.  Including meeting, dating, marrying, and having kids with this guy right here.  I met him in my very first college class in my very first semester.  But that’s a story for another day.

Swoon

 

Even though I hadn’t been diagnosed yet, there were a few signs and signals that something wasn’t right with my health.  It would still take a few more months to get it figured out, and a few more YEARS to get it even slightly under control.  However, now that I look back, I can notice many small things that hint to a future of chronic illness.

I don’t want to leave this post on a down side, so here’s a pretty picture from my house growing up.  I love that I grew up on a farm!

Riley

Are My Bones Bendy?

A few years ago, some door-to-door salesmen from Latvia came to my home with a series of children’s books that they were selling.  My husband and I sat through the presentation but didn’t feel like they were something we wanted to invest in at that time.  I’m not sorry that we didn’t buy the books, but there is one book that has stuck in my mind called Are My Bones Bendy?  I broke down and bought that one because I like how it asks questions and gives the answers in a way that kids can understand.  Here’s how the book answers the question, are my bones bendy?

I finally went to the doctor because of my fall last week.  The pain was getting more intense and I wanted to see if they could help figure out why it wasn’t improving.  The doctor gave me some (more) medications to help and asked me to get an x-ray.  After looking at the films, they decided that (thankfully) they weren’t broken.  Finally, after a few days of medication and light activity, things are feeling much better and I am on the mend.

Knowing that my ribs were not fractured gives me great peace of mind, not only because I don’t have to deal with a possible longer and more difficult healing time, but it also means that my bones are still healthy and osteoporosis hasn’t started kicking in yet!

Wait a second…why is a busy 31-year old dairy-product-loving woman who spends a lot of time chasing 2 kids worried about bone loss and osteoporosis? 

Here is why I’m concerned: “Studies have found an increased risk of bone loss and fracture in individuals with rheumatoid arthritis. People with rheumatoid arthritis are at increased risk for osteoporosis for many reasons. To begin with, the glucocorticoid medications often prescribed for the treatment of rheumatoid arthritis can trigger significant bone loss. In addition, pain and loss of joint function caused by the disease can result in inactivity, further increasing osteoporosis risk. Studies also show that bone loss in rheumatoid arthritis may occur as a direct result of the disease. The bone loss is most pronounced in areas immediately surrounding the affected joints. Of concern is the fact that women, a group already at increased osteoporosis risk, are two to three times more likely than men to have rheumatoid arthritis as well,“ (webmd.com).

Another article I found regarding RA and bone loss says, “RA’s inflammation contributes to bone damage, possibly by stimulating osteoclasts -- bone cells that deplete bone minerals. Prednisone, a corticosteroid drug used for decades to control inflammation, is one of the notorious culprits in bone mineral density loss,” (arthritis.org).  Many RA patients have been able to control their RA symptoms with little or no Prednisone.  In the 14 years I’ve been treating my RA, I have only gone 3 years with no Prednisone.  I am currently taking it and trying to taper off of it, but I haven’t had good results lately.  My heavy Prednisone use is another reason I'm so concerned about my bone health.

One way that I try to combat my bone loss is by taking alendronate (Fosamax) supplements.  Other ways to prevent and treat bone loss can be exercise (especially weight bearing), consuming dairy products, taking calcium AND vitamin D supplements, and practicing general good health and lifestyle habits (no smoking or drinking alcohol, eat healthy foods, no junk food...).

You don’t have to wait until you fall and are worried about a bone fracture to find out if your bones are healthy.  A bone density test (DEXA scan) can help determine the level of damage that inflammation and medication may have done to your bones.  This is what the National Institute of Arthritis and Musculoskeletal and Skin Diseases has to say about this: “A bone mineral density (BMD) test measures bone density in various parts of the body. This safe and painless test can detect osteoporosis before a fracture occurs and can predict one’s chances of fracturing in the future. The BMD test can help determine whether medication should be considered. People with rheumatoid arthritis, particularly those who have been receiving glucocorticoid therapy for 2 months or more, should talk to their doctor about whether a BMD test is appropriate.”  Easy, right?

While I may have difficulties with osteoporosis later in my life, it appears that I am good to go in that department, at least for a little while.  Yay!!!!

Lots of smiles :)

Riley

I Have a Phobia

Photo source: commons.wikimedia.org

I have never felt like I have ever had a phobia of any kind.  I mean, spiders (arachnophobia) and mice (musophobia) creep me out, but I don’t curl up in a ball and have an anxiety attack when I see one.  I just go get a big shoe and try to take care of it.  I don’t necessarily enjoy tight spaces (claustrophobia), but I don’t have panic attack when my daughter closes the door while I’m in my closet.  The movie IT made me sure that I will never hire a clown (coulrophobia) for ANYTHING, but I’m not going to scream and run away from a clown trying to give me a balloon at someone else’s party.

I’ve often wondered how people could be so afraid of something that they become completely incapacitated.  According to the Mayo Clinic:

“A phobia is an overwhelming and unreasonable fear of an object or situation that poses little real danger but provokes anxiety and avoidance. Unlike the brief anxiety most people feel when they give a speech or take a test, a phobia is long lasting, causes intense physical and psychological reactions, and can affect your ability to function normally at work or in social settings.

“Several types of phobias exist. Some people fear large, open spaces. Others are unable to tolerate certain social situations. And still others have a specific phobia, such as a fear of snakes, elevators or flying…

“No matter what type of phobia you have, it's likely to produce the following reactions:

• A feeling of uncontrollable panic, terror or dread when you're exposed to the source of your fear
• The feeling that you must do everything possible to avoid what you fear
• The inability to function normally because of your anxiety
• Physical as well as psychological reactions, including sweating, rapid heartbeat, difficulty breathing, a feeling of panic and intense anxiety
• Often, the knowledge that your fears are unreasonable or exaggerated but feeling powerless to control them
• In some cases, anxiety just thinking about what you fear
• In children, possibly tantrums, clinging or crying

“These factors may increase your risk of phobias:

• Your age. Social phobia typically develops early in life, usually by age 13. Specific phobias first appear in childhood, usually by age 10. Agoraphobia occurs most frequently in the late teens and early adulthood, usually before the age of 35.
• Your relatives. If someone in your family has a specific phobia, such as a fear of spiders or snakes, you're more likely to develop it, too. This could be an inherited tendency, or children may learn phobias by observing a family member's phobic reaction to an object or a situation.
• Your temperament. Your risk may increase if you're more sensitive, more inhibited or more negative than the norm.
• A traumatic event. Experiencing a traumatic event, such as being trapped in an elevator or attacked by an animal, may trigger the development of a phobia.”

Yep, a traumatic event.  That’s me.  Because of Rheumatoid Arthritis, I have developed barophobia, or the fear of falling.  I will say, my case is not entirely debilitating.  In serious cases, people will do whatever it takes to prevent a fall, including refusing to stand.  At all.  Ever.  I’m happy to stand, walk (shuffle is more like it), but I try to be extremely cautious.

I have fallen maybe 4 times in the past 13 years, and all of them have been pretty traumatic to me.  Not only do I get bruises on the part of my body that lands on the ground, the jolt my body gets from landing makes all of my joints more tender and sore, regardless if they actually hit the ground or not.

My latest fall was just last week. 

A short back-story:  I had a foot fusion in April of this year which I am still doing physical therapy for.  One of the exercises of physical therapy that I can do at home is standing on one foot to gain balance and work the tiny muscles in my foot that weren’t used for 6 weeks.

I was in the bathroom, standing on my one foot with my other barely off the ground.  I can usually put my other foot down if I start leaning to recover, and then I will lift my foot up and try balancing again.  This time, I started leaning the wrong way and I was a little too close to my bathtub and  I couldn’t step over far enough to catch myself.  I tipped over and landed on the side of the tub with my ribs.  I had the wind knocked out of me, my ribs got bruised, I knocked the shower curtain down, and I scared the #$%& out of me.

I have seen many people fall for various reasons, and they usually hop right back up and continue what they were doing.  Not me.  It’s a pretty big ordeal.  When I fall, I’m down for several minutes.  It takes me that long to catch my breath, stretch my muscles, move my stiff joints, and evaluate what exactly happened and where I hurt.  Needless to say, it is not fun at all.

Hence, my fear of falling.  And I’m not alone.

According to an article I found on Medscape, 1 in 3 people with RA will fall in a given year.  The article looked at a study that was published in February 2013 where many RA patients were evaluated regarding falls they have had.  It said:

“People with rheumatoid arthritis (RA) are at high risk for repeated falls and for fall-related injuries, including fractures and head injuries…

“The authors found that a history of falls was the most important predictive factor for future falls. Therefore, they argue, clinicians should ask their patients with RA about falls at every office visit. Risk of falling tripled after the first fall for people with RA. Other risk factors included swollen and tender limb joints, fatigue, and the use of psychotropic medication for anxiety, depression, or sleeping problems.”

I feel like I’m in Groundhog Day with Bill Murray, saying me, me, me, me, me also with all of those risk factors.  No wonder I’m afraid of falling.  Just being me seems to be a risk factor.

There are cautions and preventative measures that I can take, and these can be applicable for anyone with RA, foot problems, those who are elderly, or anyone who may have balance problems.  The first one that I would suggest is practicing caution.  Duh, right?  Keep your home clean and your floors picked up and dry.  Next, I would exercise and practice balance building skills, such as standing on one foot.  Just make sure you have a spotter or something soft to land on.  You may want to consult with a physical therapist to help give you an exercise regimen to do at home that will be better suited to you and your capabilities.  Lastly, just keep moving!  If you refuse to stand or move at all because you are afraid of falling, when you do have to get up, you will have a much greater risk of falling because you are weak. 

Ok, so maybe I don’t have a full-blown phobia, but it’s enough to be on my mind every time I stand up and walk.  While I haven’t fallen very many times, they have all been pretty hard on me and my psyche.  And a little word to you who may witness a fall from someone like me, please come see if the person is alright, but don’t immediately try to help them get up.  But don’t leave yet either!  Sometimes we need a little recovery time before we’re actually ready to stand up again.

Thanks for visiting and keep smiling!

Riley

Choose Wisely, My Dears

About 4 years after being diagnosed with RA, I started having a very intense, sharp pain in my knee when I walked.  It was a very different pain than what I was used to with my normal inflammation.  The pain was alleviated greatly when I bent my knee and walked around.  I told my rheumatologist about it and he mentioned that it sounds like I had a tear in the cartilage of that knee.  He advised me to see an orthopedic surgeon to see how extensive the damage was and to get recommendations for surgery, cortisone injections, therapy, whatever would help my extreme knee pain.  I made an appointment with the orthopedic surgeon and in the meantime, got some forearm crutches that helped immensely with my ability to get around.

It took several weeks to get in to see the orthopedic surgeon.  When the day of my appointment finally came, the technician took x-rays and I gave a short explanation to the medical assistant that my rheumatologist said it sounded like a tear in the cartilage.  The doctor came in with my x-rays and said, “Riley you have the knees of an 80-year old woman.”  (I was 22 at the time)  “Your knees are bone on bone.”  I was a bit shocked, to say the least.  A couple of years after I was diagnosed, I had the thought that I would probably be in a wheelchair by the time I was 30.  For some reason, I hadn’t considered joint replacement surgeries.  I didn’t think that it wasn’t an option for RA patients, I just plain didn’t think about it at all!!  More on my joint replacements later.  Yes, replacements, multiple.  Again, later.

About 5 months before my rheumatologist said I had a tear in my knee cartilage.  You can see my right knee is extremely swollen, my pants are tight around it.  I can barely straighten my knee because of pain and swelling.

I was a bit upset at my rheumatologist.  A tear in the cartilage?  Ummm, there was no cartilage left to tear!!!  I knew that RA could be aggressive, but my rheumatologist told me I had a “mild” form.  Well, if I had a mild form that depleted the cartilage in my knee after four years, I really felt bad for those with an aggressive form.  I have since changed rheumatologists – multiple times – and have declared that I have an aggressive form of RA.

I will say, part of the problem may have been my fault because for a few years I didn’t have very good insurance and couldn’t afford expensive, aggressive therapies to treat my symptoms.  I lived on Tylenol and Prednisone for a couple of years because I just didn’t have any money and they seemed to be the best treatment for me at the time.  My rheumatologist never talked with me about my status, improvements, digression, anything that made me feel like I needed to do more.  He did mention studies for biologic medications that he felt I would be a “good candidate” for.  I would get medication at no cost and they could possibly help.  Well, I saw the side effects and said no way after I saw the word “death”.  I wasn’t about to inject myself with a medication that could possibly work and could possibly have a side effect ending in death.  Sorry, I just wasn’t comfortable with that.

The thing that cracks me up now, is that I stayed with that rheumatologist for another 5 years!!!!  Why did I do that?!?!?  I have no idea.  I did try to break ties and try another doctor in Las Vegas at the recommendation of my orthopedic surgeon.  Ummm, that was a little scary.  I temporarily decided that my previous rheumatologist wasn’t so bad after seeing the one in Vegas.  Buuuuuttt, then I remembered what a robot he was and I started looking around again.

There is a serious lack of decent rheumatologists.  Especially in my neck of the woods.  I was able to find one only 60 miles away instead on 250, so I started going to him.  He was worse than the other two I had seen combined!  Thankfully, the only thing I really needed from a rheumatologist was prescription refills.  I had stopped taking biologics and methotrexate for a couple of years while I had my two girlies.  But this guy really drove me nuts so I went on the hunt again for a new rheumatologist.  I knew I would have to be on a waiting list for a long time to go where I wanted to (University of Utah Rheumatology Clinic), so I called them up.  They were a couple of months out on scheduling new patients.  I was pregnant with my younger daughter when I was finally able to see someone.  Hallelujah!  He is amazing! 

Why did it take me 12 years to find a great rheumatologist?  When I was diagnosed at 17, I feel I was quite independent.  I was going to college and living in a college apartment with roommates.  I had a part time job and was trying to make good financial decisions.  But I was also inexperienced, vulnerable, timid, and unsure of my options and my ability to make decisions related to doctors and treatments.  I just didn’t know any better.

I’m here to advise you that YOU HAVE A CHOICE!  For whatever ailment/situation you may have, you can be the one to choose.  The reason I went to that one in the first place is because that’s why my general doctor advised me to see.  I truly thought it was because he was the best and that’s why I was being sent to him.  It was probably more like he’s the first one who had an opening the next day after I went to my general doctor with large amounts of swelling and pain all over my body.  I needed help fast.

I’m sure you need help fast too, but after the initial appointment and diagnosis, it’s OK to look around for someone who will be great for you.  Really search, ponder, and investigate someone who may be your amazing doctor.  You are a wise person; use that wisdom to improve your situations.

Now, a call to anyone who is thinking of going to medical school: may I suggest that you consider specializing in rheumatology?  I tell that to everyone I talk to who is going to medical school, but so far it seems like oncology and pediatric oncology is the popular choice.  I will say, I recognize that there is a growing need for good oncologists, especially pediatric.  It a very noble specialization that I’m sure can give great fulfillment.  But so is rheumatology.  It may not sound as glamorous, but remember that I said there is a serious lack of decent rheumatologists.  Many of the good ones are aging and there aren’t many interested in filling their spots when they retire.  If you become a good rheumatologist, just think about how many people will look to you for relief from every day pain for years and even decades to come.  Chronic diseases like rheumatoid arthritis aren’t going anywhere, and we need you to help us.  And not just for RA.  Scleroderma, Lupus, Vasculitis, Psoriasis, and many more conditions that rheumatologists are trained to treat!  If you don’t help us, who will?  We can’t live off of Tylenol and Prednisone forever. 

 

 Riley