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Riley  

Sympathy...and RA

I frequently meet people who want to share their pain with a stranger.  But the problem is, when they see me, they don’t realize that they’ve chosen the wrong person to share pain with if they're looking for sympathy from a stranger.  It's not that I don't sympathize with people and pain they're going through, it's just that I kind of feel like they're repeating the story of my life.  I've heard that one before, yep.

After my foot surgery, I was walking in a store with my boot on, and I was looking at something on the shelves.  A lady came by and saw my boot and just started gushing about how she sympathized with me because she had a knee replacement (probably years ago), and she knows just how I feel…  I have learned to keep my mouth shut at moments like these when I really want to say, “Oh, you’ve had a knee replacement?  Well, honey, I’ve had TWO knee replacements!  A week apart from each other!  And I’ve had BOTH hips replaced!!  One of them 4 months after my knee replacements!!  And this latest surgery was a joint fusion in my foot that has been an extremely painful recovery for me.  And!... I will need to have both shoulders replaced someday, and my knees replaced AGAIN, someday, and more fusions in my feet and hands.  Wait, what were we talking about?  Oh yes, tell me again how you know exactly how I feel?”  

Photo credit: Petite Magique

I don't want to be "that person" that always one ups the "two wisdom tooth tale."  But sometimes I just want to let everyone know exactly what I think of their "tale."

I recently read a book called David and Goliath by Malcom Gladwell.  It’s a collection of true people, events, and studies that have been conducted that show how underdogs and misfits have overcome adversities to defeat “giants”. 

There’s one story in particular that really struck me as fascinating.  It follows a man named Emil “Jay” Freireich, a doctor who helped develop successful modern chemotherapy treatments by using unconventional and (then) dangerous practices and testing them on children undergoing treatments for leukemia.  He grew up in a rough immigrant home.  His father passed away when he was very young and after 7 years of being raised by an Irish nanny whom he loved, his mother remarried, left work in a sweatshop, and returned home to “raise” her two children and one stepchild.  His mother was very distant, though.  He doesn’t recall any affection given to him as a child.  He spent a lot of time on the streets.

Back then, physicians were typically from upper-middle-class backgrounds.  They were gentle people who were able to sympathize with patients.  Freireich came from a very poor background, and he was a large man who spoke loudly and had a bad temper.  Defying many odds, he became a physician and was assigned to the children’s leukemia ward at the National Cancer Institute in 1955.  It was a terrible place filled with children with a terrible disease that many of them bled to death from.  The doctors were supposed to cure the children, but their time was spent cleaning up and trying to prevent the kids from bleeding to death.

Dr Freireich made several discoveries and advancements trying to find cures for leukemia, including blood transfusions using silicone needles and plastic bags instead of metal needles and glass bottles, which gave the kids blood platelets to help stop bleeding.  This was a groundbreaking discovery, because now the doctors could focus on curing the disease, instead of trying to stop the bleeding.  He also found that combining several medications together, instead of using them one at a time, worked better and was able to treat and heal the patients.  In the 1960’s, this type of treatment was considered extremely dangerous and irresponsible.  At the time, they would give dangerous medication (methotrexate, 6-MP, and prednisode) one at a time and in small doses.  Freireich thought that combining the medications and giving them in higher doses would kill the cancer cells more effectively.  Other people thought that the drug combinations would kill the patients.  Freireich figured why not try something different to see if we can get different results, and if they die, they were going to die anyway, so it’s really not his problem.  Heartless?  Yes, but there’s more…

After the doctors could focus on treating the leukemia, Freireich was seeing a problem of children being “cured” of leukemia under his care become sick again because the chemotherapy treatments hadn’t killed every single cancer cell.  He realized that he couldn’t completely tell if a patient was cancer free by looking at blood cells, he had to look at bone marrow.  The way he extracted bone marrow was to grab the child’s leg and stick an 18-gauge needle right into the shinbone with nurses and parents holding the child down.  The procedure was quick, and it was very painful, but Freireich knew that the kids could handle the pain, because he himself, had been through pain and darkness.  He knew that the children would get over it.

Freireich was boisterous and pushy in his medical career.  He was fired from his job several times because he went against what others felt was safe and normal practices.  Because of his defiance, he helped develop treatments and practices that are used today to save thousands of lives.  But he was rough and unyielding on this road to medical success.

Why am I writing a book report on my blog?  It’s because this story struck me right in the heart.  Not only do I personally benefit from Dr Freireich’s accomplishments (with using chemotherapy drugs to treat RA), but I can relate to him as someone who is emerging through tough times to (hopefully) help someone else.  I don’t mean to sound self-serving and vain, but I have been through a very long grieving process with my Rheumatoid Arthritis, and I feel like I am able to be in a position to help others who may be just starting their grieving period (more on that to come).

I can remember something my mother said about pain several years ago.  My brother had surgery to remove his wisdom teeth when I was 8 or 9 years old and had kind of a tough time recovering from it.  One day, my mom and I were just getting out of church when we came across a member of our congregation who had been through brain surgery.  I don’t remember the details of his situation, but I remember seeing him with his fresh scar and his hair shaved off the side of his head.  He asked my mom how my brother was doing.  She said that he was having kind of a tough time.  The man told her that if my brother wanted to know what pain was like, he should come talk to him and he would explain what real pain is.  That bothered my mom.  Afterwards, she explained that just because he has been through a lot of pain, doesn’t mean that no one else ever experiences pain. 

I am here to combine these two thoughts.  I have a lot of pain in my life.  Just because I have a lot of pain that many other people don’t and won’t ever experience, doesn’t mean that no one else ever experiences pain.  A stubbed toe is still painful for someone who doesn’t have RA.  Recovery from knee replacement surgery is still hard and painful for someone who doesn’t have RA, and I sympathize with those people.  Having said that, I do know that it’s possible to recover from and “get over” painful situations.  I have gone through knee replacement surgery, twice.  I know that if I meet someone going in for a knee replacement, I know that person is going to be fine and recover from that surgery (barring any mishaps and assuming the person performs physical therapy as he/she should).  So, I may sympathize, but probably not for long because I personally know what pain is, under normal and extreme conditions.

If you would like to tell me about your pain and suffering, I would be extremely happy to lend an ear and possibly help you get over any fears you may have.  But don’t expect me to tell you what a strong person you are to be going through this trial and hold your hand every step of the way, because now you know that I already know that you are a strong person.  You don't need me to tell you that.  You need to realize that you're a strong person and you need to find your own ways to handle the pain you experience.  Your way of dealing with things may be different than mine.  I had to find my way, now let’s find yours.

Riley

Weight Update

Remember a while back when I said I needed to lose a lot of weight by the end of April?  It sure is taking it’s sweet time to go away.  I’ve been cutting calories big time, taking stairs more often, drinking more water, and I’ve even tried some “cleansing” supplements.  It’s time to kick things into high gear.

Enter: the Reboot.

A few months ago, my sister asked me if I had seen the documentary “Fat, Sick, and Nearly Dead.”  It claims to have the secret to improving your health.  If you are overweight, have an autoimmune disorder, are constantly fatigued, and just want to kick start your road to better health, this movie may be for you.  Here’s the synopsis:

“100 pounds overweight, loaded up on steroids and suffering from a debilitating autoimmune disease, Joe Cross is at the end of his rope and the end of his hope. In the mirror he saw a 310lb man whose gut was bigger than a beach ball and a path laid out before him that wouldn't end well— with one foot already in the grave, the other wasn't far behind. FAT, SICK & NEARLY DEAD is an inspiring film that chronicles Joe's personal mission to regain his health.”

Joe turned to juicing to help get his health back on track.  He called his juice diet a “reboot”.  I don’t want to spoil the ending, but I’m sure you can all guess that if the documentary was able to be produced and distributed, it probably had a very happy ending.

Joe’s goal was to get off steroids, lose weight, and lead a balanced lifestyle.  My goals are very similar.  Lose weight, decrease or get off prednisode, get my gut balanced, and feel healthy.

After my sister watched the documentary, she said she wanted to do her own reboot because she is always so tired.  When she told me that, I thought, ok, she’s thin, goes running frequently, and she eats fairly healthy (except for soda).  She’s also a full-time plus working mom of 4 energetic boys.  Of course she’s tired!  But it’s something she really wanted to do and I said I would do it with her.  We decided on a 10-day reboot.  We got juicers, stocked up on kale and celery, and started juicing.  For about 3 days…  For some reason, we didn’t last long. 

I’m going to try again.  And here’s how it’s going.  On work days, I drink a lot of herbal tea and some Naked Green Machine smoothie for breakfast, then I try to drink fresh juice for lunch and dinner.

I bought this awesome juicer from a friend, and she threw in some thin paper filters that are completely awesome!  You put them on the screen and it catches all of the pulp, making clean ups much easier.

Thanks Cathy!

Seriously, so awesome.

I don’t follow Cross’s recipe exactly.  I’ve decided to merge Cross’s blend with another that I came across.  Now that I’m writing this blog, I can’t seem to find it… But it was something like Pederson Diet.  It is named after a man of the same name who treated and somewhat cured his rheumatoid arthritis with a very strict and careful diet.  He starts off with 3 days of a juice with only celery and cucumber.  So today, I took celery, cucumber and carrots for my juice.

Looks so healthy!

Here it comes!

Once it’s all juiced, I top off my glass bottle with some POM wonderful pomegranate juice.  I love this juice and I feel like all of the antioxidants are especially beneficial for women.

Pomegranate Blueberry!

Tasty!

I haven’t been as strict with this diet as I need to be, largely because a lot of my pills that I take should be taken with food.  Really, it’s because I don’t have the self-control that I need, but I prefer to use my pills as an excuse, lol!

My goal is 10 days on this diet.  I’m on day 4 and doing ok.  I’m hungry, but I know it will be worth it.  I will keep updating you!  Anyone want to try this with me?

Riley

Shopping...with RA

Wow, I can’t believe I slacked off last week.  Wooops.

Back to reality!

I used to really enjoy going shopping.  I could walk for miles around a mall or shopping center and smell all of the new clothes, shoes, trinkets, kitchen items, candy, oh boy, I could go on and on.

Now, I get tired very quickly if I even enter the grocery store, let alone a mall.  I have turned to online shopping a lot.  The problem with online shopping is that I can’t try things on to make sure they fit.  Nor I can compare cosmetic shades to my skin.  I have had many fails of getting the wrong color of foundation, lipstick, eyeliner… It’s so frustrating.  I feel like I have to choose between my back and feet hurting as I browse cosmetics, or ordering online and getting the wrong color which either forces me to stand in line at the post office to return the products, or lose money buying the wrong products.

I have found something awesome to help me, at least with the cosmetic problems.  I have subscribed to a few beauty subscription boxes to see if I can find some items that I love.  I get to try many different items, and it’s so fun getting surprises in the mail!!!

I decided to start small and I began with the Walmart BeautyBox.  It was so perfect!!!  The best thing in there was this L’Oreal True Match shade finder.  You peel off the stickers and put it on your skin to see which one matches the closest.  Apparently I am a W1.  This was awesome because I would have chosen a different color if I was looking at this online.  So fun!

This is genius!

I have gotten a couple of other boxes, and while there has been some fun things, this L’Oreal True Match shade finder has been the most helpful in my quest to make life with RA a little bit easier.  Oh, and if I end uo getting something I absolutely don't like, I can try to swap it here.

Happy thoughts and Smiles!

Riley

Would You Choose to Live Forever?

It’s time to answer another question from Garry Poole’s “Complete Book of Questions.”  The question for today is:

If you could live forever on earth, would you choose to do so? Explain.

My answer: Absolutely Not!  Especially not with this body.

I believe that our entire purpose for this life on Earth is to grow, learn, experience, and then die and return to our bodies to the ground and our spirits to our Heavenly Father.  Click here for more info.

I can understand why someone might answer “yes” to this question.  We live in a glorious world.  There are so many beautiful things to see, places to visit, and adventures to experience.  It would take many lifetimes to accomplish all of the goals and ambitions that I have ever had.  I have whittled down my list of goals because of many things (or lack of) that have gotten in my way, and because I know I only have one limited lifetime and I want to utilize it to the best of my abilities.

Photo credit: Romi

For example: I took “Running a Marathon” off of my list because my joints are so damaged that it’s painful to even walk, let alone run for any distance.  I am ok with crossing that one off my list of goals.  I will leave this one up to my sister and brother-in-law.

Another: I used to dream of being a professional singer.  I don’t have the time, money, resources to put forth any effort for that.  My training and experience is very limited and I don't have the confidence that I would need.  I won’t ever be on Broadway or even play a big role in community theater because most roles require a lot of dancing and movement.  I get exhausted quickly and I am unable to make attractive lines with my body to be a dancer.  I can’t even straighten my elbow…  Could I still make singing professionally work?  Maybe, but I have other things occupying my mind.  For now, I'm perfectly happy watching Josh Groban sing for me.

Last one: I dreamed of raising one of my kids to be an Olympic gymnast.  I have always loved watching gymnastics and I thought it would be so awesome for one of my kids to be able to do the things those men and women do.  Training to be in the Olympics in any sport is a huge commitment of time and money, and I believe it requires a huge amount of self-discipline.  There are a couple of major issues trying to accomplish this goal.  First of all, that’s not really a goal that I can set for myself.  It’s not even something I can set for my children.  They need to have that desire and set that goal for themselves.  Second of all, training to be an Olympic gymnast takes a lot of training that costs time and money that I just don’t have.  Another issue is, my husband and I are both quite selfish people, and our kids, yep, very selfish as well.  Don’t get me wrong, they’re great and I love them tons, but already I can see that it would take a lot of personality training as well as physical training to get them in shape for the Olympics.  I have also thought about taking them to LA to be in show business, but I don’t think directors would put up with their stubbornness.  I want my kids to succeed and do well in whatever they choose.  I don’t want to be one of those parents who tries to live vicariously through their kids.

Life can pass by quickly at times.  I see how big my girls are getting and I can’t believe how much they have grown in such a small time.  I think most parents will definitely agree that time flies when it comes to your kids.  It won’t be long before they’re grown up and gone from my home to start families of their own.  There are hundreds of quotes to explain how important it is to cherish your little ones while they’re little because they won’t be that way for long.  I try to not let my RA get in their way, but unfortunately, it happens.  Quite often.  

Photo credit: Kelly at The Pretty Bee

On the other hand, life can pass by very slowly when you’re in pain.  It won’t be long before I will have lived more years with Rheumatoid Arthritis than without.  It has seemed like an eternity, and yet it’s only been 14 years.  I struggle to think about living another 14, 25, or even 30 more years with the body and the pain that I have.  So no, I would not want to live forever, possibly thousands of years, with this pain. 

Thanks P&G Photography!

Someone might say, "but think of all of the wonderful things to see and adventures to have!"  These are the only adventures I need in my life: my kids, books, writing, and a big garden.  

Riley