Searching for RA Answers

My tenth anniversary came and went last summer with little fanfare.  No cake cut.  No balloons blown up.  No congratulatory cards.  I doubt that anyone even realized the importance of June 2000.

Why was it important?  Because that's when I received a diagnosis of rheumatoid arthritis.

Rheumatoid arthritis isn't your grandma's arthritis.  You know, when she says it's going to rain in the morning because her knee hurts?  Nope, not RA.  That's probably osteoarthritis and is caused by a joint wearing out from constant use.

RA is different.  It's an incurable disease in which the body's immune system attacks the lining in most of my joints.  My immune system literally eats away at the lining which causes swelling, pain, and eventually deformity.

Chronic.  Incurable.  Pain.  Frightening words even for the bravest among us.  When the words come before babies do, they strike fear deep within a woman's heart.

In 2009 I wrote a series of blog posts sharing my rheumatoid arthritis story in detail.  I wrote to make sense of my story.  I wrote to help other women.  And I wrote so God can use my story.

I receive 5-10 visitors a WEEK who are searching for information about RA, pregnancy, breastfeeding and Enbrel (my medication).  That's a lot of women who are scared and searching for answers.

Sometimes they leave comments or email me and I encourage them.  But most of my visitors never contact me so I have no way of connecting with them further.  Even though they don't contact me I feel the fear and pain in their search engine keywords. 


Like the woman who found me by searching "is Enbrel safe during pregnancy."

What she's really saying is "Enbrel helps me function like a normal woman.  I don't want to give that up.  But I desperately want to have a baby.  I'm scared of the RA pain.  But I'm also scared to damage my baby.  Someone give me answers so I can make a choice and not be afraid of the consequences!" 

Oh, Friend, how I wish I could say "yes, Enbrel is safe for pregnancy."  But I can't because studies haven't been done.  I can only share the choices I made.  Which feels less than satisfactory in the face of such an important decision.

Then there's the woman who found me by searching "will I ever get off Enbrel."

What she's really saying is "I'm tired of giving myself a shot every week.  I'm tired of remembering to order my medication from the specialty pharmacy.  I'm tired of dealing with doctors, insurance companies and pharmacies.  Will I ever be normal again?"

Oh, Friend, how I wish I could say, "Yes, a cure is available!  You can throw away all the medicines and not think about doses and co-payments."  But I can't because most women never go completely inactive without medication.  I can only share how great the drug works for me.

Finally, there's the woman who found me by searching "my husband is taking methotrexate and I had a miscarriage is that why."

What's she's really saying is "I lost my baby.  I need answers.  I need to know what caused it so I can prevent it from happening again.  I need to know if it's our fault this happened!"

Oh, Friend, how I wish I could hug you and tell you it wasn't the Methotrexate (another RA medication)!!  But I don't know.  I've never taken Methotrexate.  I can only share that I've also experienced a miscarriage.  The loss is real and is always there, though the pain lessens with time.

The one search I've not received visitors from is "why did God give me RA."  This is a question I have wrestled with personally. 

What I really meant was "why did you let this happen?  Why did you give me a life filled with physical pain?  Did I do something wrong?  Was I not good enough?  Is there something I can do so you will heal me?"

Today I don't believe God gave me the disease but I do believe he has allowed it.  RA is not a punishment because I sinned nor is it because I failed.  God is able to heal me, if and when he chooses. 

This year I took 2 Corinthians 12:8-10 as my theme:  "when I am weak, then I am strong."  When I can go no further, then God steps in.  By sharing my story God can use it to encourage other women.  That gives a purpose to all my shots, aches and fatigue.

I'd love to celebrate my 20th RA Anniversary with a cake, balloons, and the women who've been encouraged by my story.  What do say?  Can you make it June 2020?

~~~~~~~~~~~~~~~~~~~~~

This post was entered in a contest at A Holy Experience in the hopes of winning a scholarship to She Speaks.  The She Speaks Conference is about women connecting the hearts of women to the heart of our Father God and that your heart is to serve Him and His daughters, as He leads.

5 Tips to Manage RA, Fatigue, and a Family

Have you ever gone to the beach and tried to run through knee-deep water?

It's pretty hard to do.

Either you keep your legs in the water and slog your way through or you lift your legs out of the water and splash wildly.  Regardless of the choice you make, your progress will be slow and tiring.

Running through knee-deep water at the beach feels a lot like going through my day with rheumatoid arthritis and chronic fatigue.

Chronic fatigue is one of the major symptoms of rheumatoid arthritis. The 'chronic' part means it doesn't completely go away no matter how much I sleep or rest.  The 'fatigue' part means extreme tiredness, lack of energy, or weariness.

Honestly there are days when the fatigue overwhelms me.  On those days we do the minimum amount house work and school work.  I generally lay on the couch resting while my children play in their bedrooms (and make huge messes!).

Thankfully I've learned a few tricks to lessen chronic fatigue so that those overwhelmed days are not the norm for us.

Here's how I manage chronic fatigue and a busy household:

1. Plan my daily routine.  Having a routine or schedule means I don't have to waste energy thinking about what activity we should do next.  We just follow our routine and do what needs to be done. 
2. Just do one more thing.  I frequently feel too tired to clean up a messy room.  But I can usually find the energy to 'do one more thing.' By breaking a task down into small steps I don't feel overwhelmed and get the job done.
3. Exercise.  I recently added exercise to my routine.  Right now it's only 30 minutes a day but I feel an increase in energy and decrease in joint stiffness.
4. Eat less (or no) caffeine and sugar.  I removed hot black tea from my diet in December and have experienced fewer headaches.  I also have a better sense of my energy level.  It wasn't easy to give up my tea but I feel better as a result. 
5. Rest after lunch each day. Following lunch all four of my children rest on their beds.  My 1 and 3 year olds nap for 2 hours, while my 5 and 6 year olds sit quietly and read books for an hour.  It is occasionally a battle to keep the big boys on their beds but it is worth the fight for me to have an hour of rest on most days!!

Dealing with chronic fatigue is an unfortunate effect of rheumatoid arthritis.  But by learning a few coping strategies I've made sure fatigue doesn't keep me from enjoying life with my family. 

*** This post is part of my Living with Rheumatoid Arthritis series.

Disclaimer: I am not a doctor nor do I pretend to be one on TV. This post is intended to tell my experiences NOT to serve as medical advice. If your symptoms sound similar, please consult a physician.

Disclaimer: I have not been asked by a pharmaceutical company or any related organizations to write these posts. I have not been compensated for these posts in anyway (including money, medication, or medical treatments).

Rheumatoid Arthritis (RA), Pregnancy and Enbrel

*** This post is part of my Living with Rheumatoid Arthritis series.

What do you want to be when you grow up?

Remember that question? All grown-ups seem to ask it once a child reaches 5 or 6 years old. Do you remember how you answered it?

I do.

I always said I wanted to be a mama. I usually added a few other occupations for good measure - a teacher, a librarian, or Wonder Woman. But these were always in addition to being a mom.

I've mentioned before that in 2000 rheumatoid arthritis was rapidly taking away my energy and the ability to use my hands. I feared how my disease would impact a pregnancy and daily life as a mom.

Well, by 2002 my energy and mobility had greatly improved thanks to Enbrel.  About this same time Joel and I decided it was time for us to add to our family (we'd been married for 5 years).  At that time data on Enbrel and pregnancy was very limited so we followed my rheumatologist's advice and I went off all medication.

About 6 months later, in full flare, I was pregnant.  O happy day!!  Thankfully I did not have a job at this time.  If I had, they would have fired me because I was sick and exhausted, and exhausted and sick, until about 12 weeks.  Around that time the exhaustion lifted (though the nausea hung around for a while longer).

I jokingly tell my husband I would always feel great if I could stay 2nd trimester pregnant all the time (puking is over but I'm not as big as a barn).  That may sound odd until you learn that for most women RA goes into remission (inactive) during pregnancy!

The funny thing is that after the baby's born RA usually rears it's ugly head again.  I'm no exception.  6 weeks after delivery I start feeling the old aches and pains and inflammation again.

With William (my firstborn) I again followed my rheumatologists advice and stopped nursing after 8 weeks so I could go back on Enbrel.  That was one of the hardest things I've ever had to do!  I did NOT want to give up nursing but what good was nursing if I could barely hold him.

We adjusted to life with a baby and about a year later decided to again add to our family.  I knew this time that I could NOT care for an infant and be in a flare (the term for when the disease becomes especially active).  I also knew that Enbrel leaves your body fairly quickly (because it is a live protein). 

So we took a risk.  I stayed on Enbrel until we knew I was pregnant.  I never expected that to be a month later!!  My fatigue was MUCH better this time around because I wasn't in a flare.  Once again my RA went away - until 6 weeks after Ben was born.  With him I managed to breastfeed until about 12 weeks before weaning and going back on Enbrel.

I repeated this story 2 more times - using Enbrel until I had a positive pregnancy test (usually by 6-8 weeks) and then enjoying remission for the remainder of the pregnancy.  And 6 weeks after the baby was born I would feel my RA waking up.

With Ellie and Sam (babies 3 & 4) I managed to stay off Enbrel until they were about 12-16 weeks old.  But, unlike with Will and Ben, I did NOT wean them.  I continued breastfeeding AND took Enbrel.

Let me say here that this was against the official advice of my rheumatologist and the makers of Enbrel.  My story is not intended to be medical advice.  If you are on Enbrel and considering pregnancy/breast feeding consult your doctor for what's best for you.

My understanding is that the data indicates Enbrel in pregnancy and breastfeeding is fine but no scientific research/tests have been done to be conclusive on this.

Ellie weaned herself by 9 months so her exposure was limited.  I nursed Sam until he was 13 months so his exposure was a little longer.  I'll be honest that my mommy guilt sometimes kicks in and I wonder if they will pay for my decision at some point in the future.  But for now they are both healthy and average kids.

So, ten years after my rheumatoid arthritis diagnosis I am living my childhood dream.  I am a mama - 4 times over.  I am also a home school teacher with enough books in my home to qualify me as a librarian.  Now if I could just find a pair of Wonder Woman's bracelets...


Disclaimer: I am not a doctor nor do I pretend to be one on TV. This post is intended to tell my experiences NOT to serve as medical advice. If your symptoms sound similar, please consult a physician.

Disclaimer: I have not been asked by a pharmaceutical company or any related organizations to write these posts. I have not been compensated for these posts in anyway (including money, medication, or medical treatments).

Living with Chronic Illness and Faith

This post is part of my Living with Rheumatoid Arthritis series.

I believe:

• God loves me.
• God created me for a purpose.
• God has a plan for me, which includes rheumatoid arthritis.
• my R.A. diagnosis did not take God by surprise.
• God can use this pain-filled disease for my best, if I allow Him to.
• praying for healing is OK.
• God can heal me this instant, or any instant in the last 10 years, but is choosing not to.
• my disease is not a punishment from God.
• God does not find joy or pleasure in my disease.
• God can handle my "why" questions, fears, anger, and frustrations.
• God wants me to tell Him my "why" questions, fears, anger, and frustrations.
• when I get to Heaven I'll have a new disease-free body!
• I may never understand the 'good' in my disease.

Do you have a chronic illness or some other overwhelming circumstance in your life today?  If you have a faith in God I recommend you also write down an "I believe" list.  I know it helps me when I feel overwhelmed.  

"My grace is sufficient for you, for power is perfected in weakness." 

 - 2 Corinthians 12:9a (NASB)

Disclaimer: I am not a doctor nor do I pretend to be one on TV. This post is intended to tell my experiences NOT to serve as medical advice. If your symptoms sound similar, please consult a physician.

Disclaimer: I have not been asked by a pharmaceutical company or any related organizations to write these posts. I have not been compensated for these posts in anyway (including money, medication, or medical treatments).

Living with RA: The Difference Enbrel Makes for Me

*** This post is part of my Living with Rheumatoid Arthritis series.

Do you remember my "Can't Do" checklist?

• Unscrew a grape juice bottle for the first time.
• Unscrew a pickle jar lid that had previously been opened.
• Peel a potato with a knife.
• Quickly descend a flight of stairs.
• Stay awake passed 8 PM.
• Open my mouth wide enough to bite into a hamburger.
• Get up off the floor by myself.
• Squat down to talk to a child.
• Kneel on the floor.

Enbrel helped change all of that.  Nine years after I formed that mental list I can now do everything on it, except peel a potato with a knife.  Unfortunately, Enbrel CAN'T reverse permanent damage that already exists.

In fact, my current rheumatologist and I have joked that I do so well on the medication that I should be a "poster child" for Enbrel.  And now I am!!  :)

So, what can I do now?

• Sit on the floor and play games with my daughter.
• Push my four year old son on the swing.
• Zip up my 1 year old's pajamas.
• Cut apples into quarters with a knife every day for lunch.
• Brush my daughter's hair into ponytails.
• Take hikes with my family into the New Hampshire mountains.
  

The list of "Can Do" is endless.  The main thing is that I can do all the normal ordinary "Mom Stuff" that most moms do without thinking.

Enbrel helps me be the Mom (and Wife) I want to be.

And that is priceless.

But it isn't without risks.  The pamphlet enclosed with each month's supply (see right) details the risks of this relatively new medication:

"serious infections including TB; nervous system problems, such as multiple sclerosis, seizures, or inflammation of the nerves of the eyes; rare reports of serious blood problems (some fatal); heart failure, including new heart failure or worsening of heart failure you already have; allergic reactions; immune reactions, including a lupus-like syndrome and lymphoma (a type of cancer)."

Never mind just having to give myself a shot once a week!!

For me this is a matter of what WILL happen versus what MIGHT happen.  I MIGHT have one of those terrible side effects.  But without Enbrel (or a similar medication) I WILL have deformed hands in a matter of a few years.  I WILL have no energy to play with my children.  I WILL be unable to kneel, or squat or sit on the floor.

And so I choose to take the risk.

Disclaimer: I am not a doctor nor do I pretend to be one on TV. This post is intended to tell my experiences NOT to serve as medical advice. If your symptoms sound similar, please consult a physician.

Disclaimer: I have not been asked by a pharmaceutical company or any related organizations to write these posts. I have not been compensated for these posts in anyway (including money, medication, or medical treatments).

Living with RA: 2nd Diagnosis

*** This post is part of my Living with Rheumatoid Arthritis series.

The hill before me looked insurmountable.  The gradual slope and half-mile walk from the subway station to the hotel should have been easy for my 25 year old body.  But exhaustion, fatigue, and pain threatened to overwhelm me.

Joel and I were returning to our hotel after spending the day exploring the Jurong Bird Park in Singapore.  We had enjoyed seeing vibrantly colored Toucans and other gorgeous birds in a lush, tropical zoo-like environment.

And we had walked.  And walked.  And walked.  And walked.

As we climbed the gentle hill to our hotel at the end of the day, my internal dialogue went like this:

"Come on, you can do it."  "But I'm so tired!" "Just a little further."  "If I could just sit down."  "You can sit in the hotel.  If you sit now you'll just have to get up and walk some more."  "I can't do this."  "Just take one more step."  "One more step." "You can do one more step."  "One more step." "One more step."  "One more step."

And so I "one more stepped" my way up the hill and to our hotel room.  I have never been so completely exhausted in all my life.  At the time, I blamed jet lag and the previous week spent snorkeling, hiking and sightseeing in Malaysia.

But a year later we would return to Malaysia for another week long vacation and my energy level would be vastly different.

What changed between the two trips?  My second arthritis diagnosis and a new medication.

Around the time of our first vacation to Malaysia and Singapore (I can't remember if it was before or after our trip), I visited a rheumatologist.

Upon entering the exam room, the doctor introduced herself and quickly examined my hands and wrists.  Then she explained that she had seen me walking down the hallway, saw the nodules on my wrists and my inflamed joints and knew then that I had Rheumatoid arthritis.

A thorough exam and blood work confirmed her diagnosis of Rheumatoid arthritis.  She went on to explain that it isn't curable but the symptoms sometimes lessen on their own (called remission) and/or can be helped with medication.  She said the cause for the disease is unknown but that some people (usually fair skinned Caucasian women) seem to have an increased susceptibility to the disease, though it is NOT genetic.

She also explained that a new medication had just been approved for treatment in newly diagnosed patients with moderate to severe RA.  And I fit the category!   So she started me on this new medication, Enbrel.

That was in June 2000.  Nine years later I'm still taking Enbrel.  I won't claim all the pain and fatigue are gone, because they aren't.  But they are manageable and small hills no longer look insurmountable to me.

Instead, they look like challenges.  Challenges that I know I can conquer one step at a time.

Disclaimer:  I am not a doctor nor do I pretend to be one on TV.  This post is intended to tell my experiences NOT to serve as medical advice.  If your symptoms sound similar, please consult a physician.

Disclaimer: I have not been asked by a pharmaceutical company or any related organizations to write these posts. I have not been compensated for these posts in anyway (including money, medication, or medical treatments). 

Living with RA: Getting Worse AFTER My 1st Diagnosis

*** This post is part of my Living with Rheumatoid Arthritis series.

The alarm clock went off, signaling the beginning of another day. I slowly climbed out of bed and shuffled down the hall of our second floor apartment to the bathroom. There, I turned the shower on as hot as I could tolerate and let the water wash over my inflamed joints. The heat usually helped take away some of the stiffness.

4 different medications and two and a half years had passed since my first (unspecified) diagnosis of arthritis. I couldn't deny to myself that my disease was worse. A growing list of things I could no longer do made that clear:

• Unscrew a grape juice bottle for the first time.
• Unscrew a pickle jar lid that had previously been opened.
• Peel a potato with a knife.
• Quickly descend a flight of stairs.
• Stay awake passed 8 PM.
• Open my mouth wide enough to bite into a hamburger.
• Get up off the floor by myself.
• Squat down to talk to a child.
• Kneel on the floor.

By this time Joel and I had been married for 3 years and I wanted to start having children. But I was afraid. Questions filled my mind:

• How could I care for a baby all day alone when I couldn't screw on the lid of a bottle?
• How I would I tie a toddler's shoe or zip up a coat when I couldn't kneel or squat?
• How would I keep up with an energetic preschooler when I was sleeping 8-10 hours a night and napping 2-3 hours in the afternoon and still felt exhausted?

In the spring of 2000, relief for my pain and answers for my questions came about in the oddest way.

Because of severe TMJ, my dentist sent me to an oral surgeon. The oral surgeon just happened to be knowledgeable about the different kinds of arthritis. After examining my jaw and seeing the joints in my hands, he suspected I had Rheumatoid arthritis, NOT osteoarthritis, the most common form and what athletes and seniors get.

He scolded me about not seeing a rheumatologist (a specialist in the field of arthritis and related diseases). He also explained that I probably had RA, which affected my immune system and needed very different treatment than osteoarthritis. He even went so far as to call my primary care doctor and tell him I needed to see a rheumatologist!

On the next visit to my P.C., he handed me a referral to a rheumatologist in my area.  And that was that.

Once again I had hope that the pain and fatigue would go away and that my "Can't Do" list would become a memory of the past.

Disclaimer:  I am not a doctor nor do I pretend to be one on TV.  This post is intended to tell my experiences NOT to serve as medical advice.  If your symptoms sound similar, please consult a physician.

Disclaimer: I have not been asked by a pharmaceutical company or any related organizations to write these posts. I have not been compensated for these posts in anyway (including money, medication, or medical treatments). 

Living with RA: The Beginning

*** This post is part of my Living with Rheumatoid Arthritis series.

It was August in Arkansas. And that meant heat and humidity. The air conditioner in the living room hummed day and night attempting to cool the small house to comfortable levels. Each morning I slowly rolled out of bed and gingerly walked to the living room where the temperature and humidity were at least tolerable.

My arms and fingers, swollen until I almost couldn't wear my shiny new wedding ring, remained numb for the first hour of each day. My ankles and feet barely squeezed into my sandals. Though only 22 years old, I moved as if I were 80. We (myself, my mom and my husband of 3 months) assumed that the swelling was a combination of birth control pills, heat, humidity and too many sodas. So, I stopped taking the pills, cut back on sodas and hoped cooler weather would make the swelling, numbness and pain go away.

We didn't know, then, that the weather, Pill and sodas were secondary causes. The primary cause of my mysterious ailment was Rheumatoid arthritis, a chronic disease in which the body's immune system attacks the lining in the joints. But I'm getting ahead of myself; a specific diagnosis wouldn't come for nearly 3 more years.

Later that fall, now 23 years old and living in Rhode Island, I visited a primary care doctor. He said that I had "arthritis," didn't specify which kind, and prescribed a medication to treat it.

Arthritis didn't seem all that bad. After all, my Grandma always talked about arthritis in her hand and my dad complained about it acting up in his knee when it rained. It didn't feel scary at all. I had a name for my illness and a medication to treat it.

I left the doctor's office feeling confident and relieved. I thought I would just take a little pill each day and my body would be back to normal.  That the inflammation in my hands would disappear and I would jump out of bed each morning.

Boy, was I wrong! But I'll tell that part of the story in my next post.

** Photo from 1998. Taken in Massachusetts.

Disclaimer:  I am not a doctor nor do I pretend to be one on TV.  This post is intended to tell my experiences NOT to serve as medical advice.  If your symptoms sound similar, please consult a physician.

Disclaimer: I have not been asked by a pharmaceutical company or any related organizations to write these posts. I have not been compensated for these posts in anyway (including money, medication, or medical treatments). 

Living with Rheumatoid Arthritis

I mentioned briefly in my photo shoot post that I have Rheumatoid arthritis.  That may have surprised some of my regular readers since I haven't written about my life with RA on this blog.  I'm changing that now.

As a newly diagnosed patient in 2000, I scoured the web for information about Rheumatoid arthritis.  Other than the Arthritis Foundation, I didn't find much.  And other than in their forums, I didn't find ANY personal stories.

So, for my regular readers and any newly diagnosed RA patients who have stumbled across my blog, I am sharing my story now.

Rather than create another label for RA, I'm going to use this article as a list of all my disease related posts.  As they are published I will link to them from here.

• Photo Shoot at My House!
• The Beginning
  
• Getting Worse AFTER my 1st Diagnosis
  
• 2nd Diagnosis
• The Difference Enbrel Makes for Me
  
• RA, Pregnancy and Enbrel
• Living with Chronic Illness and Faith
• Searching for RA Answers
  

If you have any questions feel free to comment or email me. 


Disclaimer: I am not a doctor nor do I pretend to be one on TV. This post is intended to tell my experiences NOT to serve as medical advice. If your symptoms sound similar, please consult a physician.

Disclaimer: I have not been asked by a pharmaceutical company or any related organizations to write these posts. I have not been compensated for these posts in anyway (including money, medication, or medical treatments).