"Ah-Ha"

I was thinking about the first moment after surgeries when I realized that life was truly getting better.  It wasn’t the day that I took a first step on my new knee implant.  It wasn’t the day I went home from the hospital.  It definitely wasn’t the first day of physical therapy.

My first “ah-ha” moment when I knew that life was getting better, was on a Sunday at church.  I belong to a church that, one Sunday a month, members of the congregation are invited to come up to the pulpit and say a few words (or testimony) of Jesus Christ, an inspirational thought, or other inspirational church related stories or incidents.  I remember arriving at church with my walker and sitting alone on a bench.  They opened up the time to the congregation to come up.  I didn’t know I was going to get up, but I had a feeling that I should go up and say a few words about how well things were going and how I was able to see the positives through this trial.  I started to slide over toward the aisle.  For a moment, I thought about taking the walker, but it seemed like it would be more of a pain to get it out and maneuver around everything, so I just stood up and walked toward the front of the room.  As soon as I started walking toward the front of the room where the pulpit was, I started to cry.  There were a couple of steps to get up to the microphone, and by the time I conquered those, the tears were flowing and I was barely able to speak.  It had been so long since I was able to do anything like that.  I had walked without the aid of crutches, and relatively pain free for about 25 feet, and truthfully, it felt like I weighed nothing.  All I could say at first was, “I made it!”

After a few moments, I was able to get calmed down and I said a few words about how blessed I felt because of the success of my surgeries and urged people to see the good in their lives and not be blinded by the small trials in life.  Yes, I said small trials.  To me, the physical pain was a small trial.  The emotional pain was, and is, the big trial. 

Yes, I still have pain.  Even after 5 surgeries to fix damage caused by RA, there is still a lot of pain.  RA is a non-discrimination disease.  It doesn’t limit damage to one or two joints.  It’s everywhere in my body.  And not just my joints. 

Even though I still have a lot of pain, I am at a point in my life where I can see many positives and I’m not blinded by the few negatives I am facing.  At least I’m trying really hard to not be blinded by them.  The negative mind is a tough foe to conquer.  But with the help of Jesus Christ, I have been able to see the progress that I have been trying so hard to achieve.

I would urge you to turn to God through your trials, whatever they may be, and he will help you through.

Riley

Weight and RA

Body weight can be a sensitive topic under any normal conditions.  When you add RA in the mix, in can get even more sensitive, touchy, very confusing, and very, very important.

I had always been fairly thin as a kid.  It’s not surprising since I was active with sports and farm life.  When I moved out of my parents’ house my second semester of college, I gained the typical freshmen 15, but I think I was more like freshmen 20, in only a few months.

When I started to feel the aches and pains that would ultimately lead to my RA diagnosis, I started to lose weight.  My appetite had decreased because I wasn’t feeling well, I was constantly cold and shivering, and every move I made used extra energy because it was so strenuous.  I lost those 20 pounds plus some very quickly.

Even though that kind of weight loss was extreme, my weight was one of the last things on my mind at the time.  I was too busy being in pain, trying not to flunk out of college, trying to keep my job, and taking many hot showers to try and get warm. 

Once I got diagnosed and began taking several medications to ease my pain and other symptoms, I was able to stop my weight loss and stayed at a pretty steady weight for a few years.

My husband took a college course from a professor who claimed he “cured” his RA by adjusting his diet and using certain supplements.  I was very interested in how he did it, because, well, it’s obvious why I was interested.  He subscribed to the “yeast syndrome” idea and followed a candida diet.  I did a bit of research and, being a nutrition major, I had some doubts about an extreme diet like that, but I figured I could at least try it out.  I started eating a diet of meat, eggs, vegetables, and yogurt, and avoided sugar, dairy (except for yogurt), flour, yeast products (breads, aged cheese…), and fruits and fruit juices.  After a few weeks of a very strict diet, I was able to begin incorporating other foods such as grains and fruit, while still avoiding sugar and yeast products.

There were a few RA and non-RA issues that were alleviated while I was on this diet (about 18 months).  Before the diet, I craved sugar and bread all the time.  My body and joints were very tender to the touch.  If I bumped a joint, I would burst into tears because it hurt so badly.  I had a lot of stomach issues that were embarrassing and that’s all I’m going to say about that topic.  I was also having a lot of headaches and migraines.  If you have never had a migraine before, let’s just say they’re terrible.

Shortly after starting that diet, my joints weren’t so tender.  It was great to not want to wrap my body in bubble wrap to avoid bumping into things.  My stomach issues were alleviated which was awesome.  I still craved sugar and bread in the beginning, but the cravings subsided after several months.  Probably the greatest improvement I saw, was that my headaches and migraines went away!  I went from having 4-5 headaches per week to 1-2 headaches per month.  And I went from 2-3 migraines per month to 2-3 migraines per year!  It was heavenly!  Even though I am no longer on that diet, I still get very few headaches and migraines.  If I start to feel one coming on, I stop eating sugar and bread for a few days and things calm down.  Now, back to my diet and weight…

As one might expect with an extreme diet like that, I lost some weight.  I was quite thin to begin with, about 120 pounds.  At 5’7” I didn’t have a whole lot to lose but my body found some anyway.  I got down to 100 pounds before I realized that things were going too far.  I started drinking Atkins shakes to help me gain weight, but it didn’t work.  It stopped my weight loss, but didn’t help me gain.  I was drinking 3-4 shakes a day plus eating my regular meals and snacks of eggs and vegetables.  I started to get bone spurs from all of the calcium I was getting from the shakes, so I decreased to 1-2 shakes a day.  

 

Scary thin

When I looked at myself in a mirror, I didn’t notice how thin I was.  I definitely saw it on the scale, but my reflection didn’t show what other people could see.  It wasn’t until I saw a photo of myself that I was able to see what others could, that I was scary thin.  People would constantly ask my husband if I was ok because I looked sick.  I started incorporating more grains and fruit in my diet which helped me get back up to a whopping 115 pounds.  I was still thin, but not scary thin.

 

Scary spider sculpture, not scary thin

There were definitely benefits of that diet that my body appreciated, and I found some awesome foods and recipes while on that diet, but my love of sugar and bread started overpowering things, and I didn’t get the “miracle” results that the books and articles I read were promising me.  I don’t really remember what got me off of that diet, but I know it wasn’t instant.  I slowly started eating things like regular bread, a piece of chocolate here and there, milk with meals, getting very tired of eating eggs all of the time.  All of those things combined got me back on a “western” diet, which is very tasty, but quite unhealthy. 

Fast forward a few years, lots of prednisone and other meds with weight gain side effects, a couple of kids, and a sedentary job, and I am currently at my highest weight ever.  I need to lose some weight, and I need to do it fast!  I scheduled a photo shoot for next April.  I’m doing it for a project I want to do for this blog and I’m super excited!  But there’s no way I feel comfortable doing it while I’m at this weight.  I’m hoping that will give me a deadline and help me be more dedicated to losing this weight.

Do I dare reveal my weight?

I hope you will follow along with me and help me be accountable for what I do and eat.  I already know that I won’t be “cured” of my arthritis, but I hope that losing weight will help me feel a bit better and help my joint implants last longer. 

To be continued…  

Riley

Surgeries #4 and #5

I will say it again, getting all of these surgeries has been difficult, but the end results have been amazing!  After my knees and first hip replacements, I had a few years of awesomeness!  I could walk, I even tried running a little bit just to see if I could (and I did!), I went hiking, worked in my garden, had a baby, and things were going well.

More on this to come :) But isn't she precious?

While I was able to pretty much do what I wanted to, my other hip was bothering me a little bit.  It wasn’t anywhere close to the pain I was having with my other hip, but it would give me grief once in a while.  I knew it needed to be replaced too, but it wasn’t unbearable yet.  I struggled to make the decision to get that surgery because I was still able to do things.  I wasn’t walking on crutches, it wasn’t aching all of the time, it didn’t hurt with every step…  But I knew it had to be done sometime, so it might as well be now.  I was even still questioning whether or not I should get the surgery when the surgeon met me outside the operating room.  I expressed my concern that it wasn’t unbearable yet and do I really want to do this?  He was so sweet and told me it was completely my choice and it wasn’t too late to back out.  I told myself to quit worrying about it and we went ahead with the surgery.

My baby was about 6 months old when I scheduled surgery.  I decided I wanted to get it done before she got too mobile and I didn’t want to be incapacitated when she decided to start climbing on things and causing trouble.  So, surgery number 4 went down.  I can honestly say that it was the easiest surgery I’ve had (well, RA related surgery, anyway).

I went in for surgery on a Tuesday, was up and walking Wednesday and getting in and out of bed by myself (much to the surprise of the nurses in the hospital), went home Thursday, and by Saturday I could carry my baby and hobble around the house without my walker.  I even went back to work after only a couple of weeks.  I didn’t do outpatient physical therapy, I just walked, and walked, and walked.

So by 28 years old, and 11 years after being diagnosed with RA, I had 4 total joint replacements!  And my first rheumy said it was a “mild” case.  I’m so glad I finally left him!

So, remember those hikes I told you I went on at the beginning of this post?  One of those hikes I went on was a 6 mile round trip hike to Calf Creek Falls in Southern Utah that I originally thought was going to be a 3 mile round trip hike.  Let’s just say I was more than bushed after that day.  Well, my left foot was hurting after that hike.  A lot.  And it was a different pain that normal.  I thought maybe it was a stress fracture.  I went in to get it x-rayed, and they said there’s no fracture and the only damage the doctor could see was typical arthritis damage.  Well, ok, that was good news.  It took a really long time for my foot to stop hurting.  The pain would come back every once in a while, but it would go away.

Calf Creek!

About a year ago, the pain wouldn’t go away.  My foot was aching constantly and I decided it was time to do something about it.  I had met with a foot surgeon before, and his suggestion was a fusion on one of the mid-foot joints.  He had me try to move my foot and rotate it a certain way, but it wasn’t going far.  He explained that there was just enough movement in that joint to cause pain, so he said we will fuse it together so it wouldn’t move anymore and wouldn’t hurt anymore.  In April 2015, I had my FIFTH surgery to fix joint damage caused by Rheumatoid Arthritis.

Foot before

While my foot surgery wasn’t necessarily the most difficult surgery I’ve had, it was very different from my other surgeries.  With knee and hip surgeries, I was encouraged to get up immediately and walk.  But with the foot surgery, I was restricted to absolutely no pressure on my foot for 6 weeks!  The only way I could get around was on a scooter that I knelt on.  Oh, did I mention that I had a 3 year old and a 10-month old at the time?  Yeah, it was a really long 6 weeks.  Then when the 6 weeks did pass, I had to very slowly begin to put pressure on my foot, so I stayed on the scooter for another few weeks.  I was so ready to be done with that thing, but I tried to be patient.  I knew it would all be worth it.  I had a walking boot that they put on right after surgery, and I loved that thing!  It seems so strange to me the difference the boot made as I was recovering.  I went to outpatient physical therapy for my foot, which was very helpful and fun, and now I think things are going great!

I am currently 6 months out from my foot surgery.  My foot still gets swollen, but it doesn’t ache constantly.  I’m not planning on running, walking in stilettos, or anything else crazy, so I think this surgery has accomplished what I was hoping for. 

Foot After: Look at those sexy scars

Five surgeries down.  How many more will be in my lifetime?  Who knows?  I do know that I’m not a world record holder by any means.  There are people who have been through more surgeries than I have and at younger ages.  I also know that surgeries are a part of my life, and while I was scared and depressed in the beginning, I have accepted them and embraced them.  They have been a great ice breaker, and I have met many good people because of them. But more importantly, they have been very helpful in improving my quality of life so I can do more with these:

Lovies! Thanks P&G Photography!

Until next time, 

Riley

Surgeries Part 3

When I talk about my joint replacements, I am talking about total joint replacements.  Total knee and total hip replacements are more invasive than partial joint replacements or other joint surgeries.  Just to clarify...

The first day of outpatient physical therapy after my knee replacements was pretty tough for me.  I wasn’t anticipating staying for a full session/workout that day, I hadn’t taken painkillers in over 24 hours, I had no idea what to expect for PT, and it had only been one week since I had been released from the hospital in the first place.

 

The first exercise I did was called wall slides.  I was lying on a table with my feet against the wall, knees bent about 90 degrees, and I slid my feet down and up the wall for several minutes.  The goal was to get my feet as low as possible so my knees could bend and stretch, hopefully increasing my range of motion each day.  My left knee still had staples in it, but they still wanted me to work it.  The skin was being pulled tight as I slid my feet up and down.  My knees were still terribly swollen and my incisions were so new, I felt like they were going to pop open and the staples were going to fly at me.  Enough of that image…

Staples holding things together

 

I don’t remember every exercise that I did, but I do remember there was a lot of bending and straightening my leg.  The worst part for me was when the physical therapist pushed down on my knees while I was lying on the table.  As if that wasn’t enough, immediately after that, they put ice packs on my knees and prop my feet up in “swiss cheese” blocks, putting the bend of my knee at zero degrees, hook up the electrodes, and let me hang out for 10 minutes while the backs of my knees were yelling at me to stop the madness!  And!  I did those exercises twice a day at home!

Time went by, I got the staples out of my other knee, I continued to go to physical therapy three times per week, did exercises at home, walked around with a walker for several weeks, had a birthday, increased exercises, increased range of motion, decreased the need for pain meds, went back to work, and finally was able to walk without crutches or a walker.  For a couple of weeks…

One day at physical therapy, I was lying face down on a table with my legs hanging off the back.  The physical therapist added weights to my ankles to weigh my legs down and increase the stretch on the back of my knee.  My hip started hurting during that exercise.  I guess it was just stretched a bit too far that day.  I expected the pain to go away, just like other pains when I overexert myself.  But, weeks went by and it didn’t.  I started to hunch over again and walk with my knees bent which hindered the healing process of my knees.  Scar tissue was building up behind my knee and I couldn’t straighten them again.  I started walking with crutches full time again.  I saw my orthopedic surgeon again, and in October 2008, I had my first total hip replacement.

Most people who have experienced both hip and knee replacements will say that the hip replacements are much much much easier to recover from.  There isn’t much range of motion that needs to be gained or exercised.  The best physical therapy you can do with a hip replacement is walking.  Walk, walk, walk.

I wish I could say that my first hip replacement was “easy”, but it just wasn’t.  I would almost go so far to say that it was the worst surgery I have been through, and here’s why.  My knees were replaced just 4 months earlier and because I was walking hunched over and scar tissue had built up, that scar tissue needed to be “broken up” so I could straighten my legs and walk normal again (or at least as normal as someone with RA deformities in their legs can walk).  It’s a simple process.  The doctor or physical therapist simply pushes down on the knee as hard as possible to break that scar tissue.  It’s extremely painful.  Sometimes the patient will even pass out from the pain.  My physical therapist told me many times that if I pass out, he will just push harder on my knee and get ‘er done.  I never passed out and I always told him to stop before it got to that point.  I usually ended things in tears, but not unconscious. 

While I was in the operating room and under general anesthesia for my hip replacement, the surgeon popped my knees and broke the scar tissue while I was out and not able to feel it or remember it.  Now that I had my hip replaced and the scar tissue broken up from my knees, it was like I was restarting knee replacement recovery all over again.  The physical therapist in the hospital did the same exercise as before, except I couldn’t bend my hip more than 90 degrees for fear that it would pop out of place because the ligaments around the hip had been stretched during surgery and they weren’t holding things in as well as they used to.

One problem I had with hip surgery was with a drain tube in my leg.  They insert a drain tube near the surgery site to help any residual fluid and blood drain into a collection bag.  In order to empty the bag, the nurse needs to clamp off the tube so it doesn’t make a huge mess.  After one of the nurses emptied the bag, she forgot to unclamp the tube, and I felt a lot of pressure and buildup after a couple of hours.  We didn’t notice that the tube was still clamped until after I had already been in an increased amount of pain and we couldn’t figure out why.  Even though the tube got unclamped, it didn’t relieve any of the pressure or pain associated with it.  I had to have a portable toilet brought in my room and 4 nurses had to help me go 2 feet from my bed just so I could go to the bathroom, the entire time I was screaming in pain.  This went on for 2 days in the hospital.

Before that, I was able to stay on top of my pain with Lortab and Percocet, but it was just too intense and I had to take Morphine just to get through the next 30 minutes.  I couldn’t sleep.  I couldn’t eat.  I was feeling sorry for myself that I was a 24 and had already gone through three total joint replacements.  I was absolutely miserable.

I was released from the hospital and went home on Halloween in 2008.  I continued to go to physical therapy for my knees.  I went back to work after only a couple of weeks, and even though I was on pain meds and not feeling like my best self, I was still able to accomplish all I needed to.

My doctors and physical therapists stressed the importance of doing daily exercises to increase and maintain the range of motion in my knees.  Especially keeping the ability to straighten my leg to zero degrees.  I have a friend who had a total knee replacement (well actually total knee and thigh bone replacement were done because of a tumor), and her physical therapist didn’t stress that enough.  She has scar tissue built up behind her knee so she is unable to straighten her leg to zero degrees and she walks with a limp because of it.  I am grateful that I had such wonderful physical therapists that helped me achieve the goal of zero (or nearly zero) extension in my legs.  I didn’t appreciate them at the time, but I definitely do now.

I will say it again, I sound like surgery and physical therapy are horrible things.  While I admit, they are very difficult for a short time, the long term benefits have been absolutely magnificent!  I can walk upright.  I can bend over.  They have given me a much better quality of life.  I just had to get through those first few months.

I can smile about it now :)

Riley