Fighting Companion

Some people feel alone in the fight against rheumatoid arthritis.  It is difficult to explain the type of pain that is brought on by the flares and inflammation.  But, I am no longer alone in my fight.  In November 2016 my mother-in-law was diagnosed with rheumatoid arthritis.  I have someone who I can talk to now who understands my pain, my mental anguish, my strengths, and my weaknesses. 

I feel that my mother-in-law has ended up here like so many others, through years of being misdiagnosed.  She really has been in pain for a long time, but she has had a back injury and has survived a few automobile accidents so most doctors related her pains to effects of traumatic injury.  Needless to say, she has been getting worse over time.  She has experienced the same pains and debilities that I have had.  When your hands hurt so much that just the sheet from your bed is enough to send you through the roof, or when you cannot articulate your fingers enough to prepare a meal.  I feel sorry that it has take this long to get a diagnosis, but relieved that she finally has an answer.  Might not be the answer she wanted, but now she doesn't have to go through this alone. 

It's funny how we grown up looking to our parents for support and advice.  I get to be the source of support and advice for my mother-in-law.  I was overwhelmed when I was first diagnosed and I did a lot of research on my own.  I can help answer her questions and help address her concerns on a personal level. 

We are awaiting her first appointment with a rheumatologist.  The only blood work she has had so far is basic labs and a rheumatoid factor.  Anxiously awaiting the first set of labs and x-rays from the rheumatologist here in the near future.  I am very curious as to her CCP levels, which reflect how aggressive the RA is in a person.  Mine categorizes me as moderate to severe and I am praying she does not have as high of a level as I.  The sooner she gets her appointment, the sooner she can start treatment. 

I am pretty close to my mother-in-law.  I have actually known her most of my life.  This disease will only bring us closer.  We don't even need to speak to be able to know the pain each other has endured, and will possibly continue to endure. 

She is just now starting her journey.  It will last the rest of her life.  We will fight it together.  All we can do is be there for one another, support one another, love one another, and hope for a cure. 

Sources of Strength and Support

You could say I am a religious person, of the Christian faith.  I do not go to church regularly nor did I really grow up in one.  I grew up with the morals and teachings of Christianity, I just do not follow “organized religion” per se.  I have my beliefs.  I do believe in God and my relationship with Him is personal and how I choose.  It’s not perfect, I do not claim it to be.  This works for me and I feel truly, deeply that God is present in my life.  One of my greatest beliefs is that everything we go through, good and bad alike, is meant to be.  The people in our life are in it for a reason.  God DOES NOT give us more than we can handle.  He tests us through everything.  Finding the meaning and teachings behind it is the difficult part.  I do not know why I survived a life threatening illness at age 16,  or why I battle infertility, rheumatoid arthritis, and autoimmune hepatitis.  I just know that for some reason I am meant to. 

The presence of God in my life is a source of strength.  An even greater source of strength is the people that I have in my life.  Those ever present, those who have come and gone, those whose lives I touch and don’t even know it, and those who I am yet to meet.   At first, I did not want people to know when I was suffering and needed help.  I felt slightly defeated and inadequate.  I should be able to clothe myself and make dinner.  It shouldn’t be difficult.  I should not have to ask my husband to tie my shoe , clasp my bra, or cut up ingredients for dinner.  I shouldn’t need an arm for support during a hike.  As the time has passed since my diagnosis, I have become unashamed of needing help.  I am very open about my condition.  I decided that I will not let it control me.  I will not let myself fall into depression (although I have to admit I have had small episodes here and there).  At the same time, I listen to my body and know to recognize when I need to take it slow or ask for help.  It can cause more damage than good pushing through the pain.  My joints are important.  My body is important.  My health is important.  The people in my life who are closest to me are amazing!!!! I could not be more blessed.  They are very attentive to me and do not hesitate to help when needed, asked for or not.  

The greatest blessing, my husband.  He is the one who gets the see the bad and ugly of rheumatoid arthritis.  He is the one who has chosen to stand by my side through sickness and health.  The first time he stepped in was when I was struggling to make dinner and it made me cry.  I did not ask for it.  I was pushing through, keeping back the tears.  Without hesitation he jumped in and made me go sit down and rest.  I pushed back at first, but I gave in.  He is right there for me to talk to when I get gloomy and the first one I see in the morning to tell me today is going to be ok.  He is truly the love of my life and I am so eternally grateful for his part in it. 

Through everything my parents have been there to support me.  My father and mother are the best.  They listen to me and encourage me.  My mother is a nurse, and since I moved out of the house at age 18 she is the person I usually call for medical advice.  Without her, my life would be dull.  She fills my world with color, light, and laughter.  My father is the first man I loved and has always been the center of my heart.  He taught me about the world and literally gave me it as well.  I am always and forever be grounded in my family.  Whenever everything in life fails, my family will not and will be there for me always. 

My family and friends keep me going.  My heart beats for them as they are what fill it with love and happiness.  I keep going for them.  I keep going for God.  I keep going for myself.  This life is too great to sit back and watch.  I live it with them by my side to experience all the joy, laughter, love, happiness, heartaches, tears, and tragedy. 

Pills, Pills, Pills and an Injection Too!!

Life with rheumatoid arthritis and how it takes over your medicine cabinet!

Madness in the Medication

Unfortunately, there is no cure for rheumatoid arthritis.  The goal is to reduce your symptoms to bring back the quality of life you desire and to ultimately put the disease into remission.  There is an overwhelming amount of information to absorb when working with your rheumatologist to find the right medication or combination of medications that work for you.  Each person diagnosed with rheumatoid arthritis needs an individualized, frequently monitored drug regimen as the disease affects each person differently. 

My biggest piece of advice for anyone dealing with an autoimmune condition or other forms of chronic illness is to be an active participant in managing your health.  If you don't comprehend what your rheumatologist is telling you, ask him/her to slow down and explain to you what they are trying to say in laymen's terms.  Some physicians get caught up in all the medical jargon and need to be informed when their patients need them to explain things in a different way.  I am fortunate enough that I work in the medical field and have a little more understanding of medical terminology, procedures, and medications than the average person.  If I don't understand something, I already have the resources at my finger tips to do the research and talk to my rheumatologist in more detail on the areas I have questions. 

There are two kinds of drugs used to treat rheumatoid arthritis, they are classified as DMARDs, disease modifying anti-rheumatic drugs.  DMARDs are either non-biologic, or biologic.  Click on the link below for information regarding traditional and biologic DMARDs.

http://www.arthritis.org/living-with-arthritis/treatments/medication/drug-types/disease-modifying-drugs/drug-guide-dmards.php

It has been a year-and-a-half since my diagnosis.  In that time, it has been challenging to find a drug regimen that is right for my body.  For the moment, how long is uncertain, my rheumatologist has found the magical combination the keeps my symptoms to a minimum and allows me to return to the activities I love. 

In June 2015,the day I received the call from my physician with the diagnosis of rheumatoid arthritis, he sent a prescription for methotrexate to my pharmacy and that I should follow up in one month.  I started on 10 mg once a week.  I was glad this medication wasn't daily as I have high blood pressure (hypertension) and am already taking a daily medication that I already don't want to be taking.  More on methotrexate and how it is used to treat rheumatoid arthritis click the link below.

http://www.arthritis.org/living-with-arthritis/treatments/medication/drug-types/disease-modifying-drugs/methotrexate-side-effects.php

In September of 2015 I was having some abdominal pain that was more intense than my usual, enough cause for concern for me to go to the emergency department.  I have a long history of abdominal issues as a results from a medical emergency at age 16 that almost took my life.  But, being that I was on methotrexate, I had more cause for concern than usual with abdominal symptoms and pain.  The ER physician found nothing acutely wrong that warranted admission, but my liver enzymes were very high indicating an issue with my liver.  Normal lab values for AST are 2-54 and ALT are 7-39 .   My AST was 554 and my ALT was 343.  I have had high liver enzymes in the past, but the physicians just brushed those occurrences off as fatty liver disease.  Every time my liver enzymes were high I had a hepatitis panel drawn and was always negative so no further investigation was done as I was a young and relatively healthy adult (at that time).  This time was different, being that I had RA and was on methotrexate.  I was to follow up with my primary care physician in a few days.  On follow-up with my primary care physician regarding my liver enzymes her ordered repeat lab work.  This time my AST was 754 and ALT was 428.  There was something going on and it needed to be investigated.  Being that I was on methotrexate at the time it was considered to be a possible etiology for my elevated liver enzymes, but with my history of elevated liver enzymes with no clear cause, there was the possibility of an underlying, undiagnosed condition that could be exacerbated by the methotrexate. 

One month later, I underwent a liver biopsy.  There was cause for concern of autoimmune hepatitis.  After the results came back, again I received a call from my primary care physician with a diagnosis, I have autoimmune hepatitis.  Yet again, I thought I already was going through enough and was proven wrong.  The thing is, when a person has one autoimmune condition, there is a significant chance that they may have more than just one autoimmune condition and it's only a matter of time as to when a second autoimmune condition will arise.  It only took 6 months after my diagnosis with RA to be diagnosed with another autoimmune condition.  Actually, in that 6 month time frame I was diagnosis with 2 additional autoimmune conditions.  Between the RA diagnosis and autoimmune hepatitis diagnosis, I had a condition known as Raynaud's phenomenon develop.  It is yet another autoimmune condition that can be brought on by RA or as a disease all its own.  Fortunately, I had secondary Raynaud's and not the more serious diagnosis of primary Raynaud's.  Nonetheless, upon the diagnosis of autoimmune hepatitis, I was to immediately stop the methotrexate.  The additional damage to my liver was not worth taking this particular drug.  Therefore, I started on Plaquenil 400 mg daily.  Plaquenil is an anti-malarial drug that is also used to treat rheumatoid arthritis.  Most cases patients take both methotrexate and Plaquenil, but I could not.  For more information on Plaquenil and how it is used to treat RA, click on the link below.

http://www.rheumatology.org/I-Am-A/Patient-Caregiver/Treatments/Hydroxychloroquine-Plaquenil

After starting Plaquenil in late November, early December 2015 my symptoms were slightly more manageable, but my quality of life was still greatly affected.  I had various hobbies I enjoyed that were proven difficult at times and sometimes I was not able to carry them out at all.  I love photography, jewelry making, watercolor, crafting, cooking, baking, and quilting.  I grew up being outdoors.  Fishing, camping, kayaking, hiking, exploring is in my blood.  My life was slowing losing these activities or they were difficult.  I pushed myself through the pain sometimes, when I know I shouldn't have.  It is our responsibility to listen to our bodies and I did not want to at times.  I guess it was the denial and depression at times.  Here I was, a 27-year-old woman in the 21st century and I had difficulty tying a fishing knot, putting a bead on a string, pulling a needle through a piece of fabric, and cutting up chicken for dinner.  One of the most disheartening things to happen to me was when I could not even hold a cup of water.  I could not grasp the cup well enough and I had tremors in my hands that required me to carry the cup close to my body and with both hands.  I mean seriously, a cup of water was too much. 

From the end of 2015 to mid 2016 I had good days and I had bad days.  But, I still did not have long term relief from my symptoms.  I don't think I went more than 3 weeks in between visits to my doctor or the emergency room.  Sometimes, multiple appointments in one week.  I was not getting back the quality of life I desired on the Plaquenil.  This was difficult for me.  Steroids was out of the question for me.  It had been mentioned the option of taking steroids for immediate, yet possibly short lived relief of my symptoms.  For me, it was out of the question.  My body does not like steroids.  I gain weight on steroids, which is a common side effect, but not one I was willing to endure.  I had been trying to lose weight and was successful up until I had an allergic reaction at a restaurant, my food was contaminated with avocado.  Yes, I am unfortunately allergic to avocado.  Benadryl did not take away the burning rash from my body and was given high dose steroids to counter act the reaction.  I put on 10 pounds in what seemed like the blink of an eye which lead into a short period of depression. 

Finally, in April 2016 my primary care physician said it was time to refer me to a rheumatologist.  The next step in my therapy was to advance to biologic DMARDs.  This is something my PCP was not comfortable with overseeing and therefore it was time for me to seek specialized medical supervision/treatment.  After establishing care with a rheumatologist and undergoing lab work as well as x-rays, despite almost a year of drug therapy, I still had moderate to severe rheumatoid arthritis.  My CCP level was still very high and my rheumatologist informed me it is time to get more aggressive with my therapy.   The imaging of my hands and feet revealed some changes happening in the joints of my feet/toe with evidence of bone erosion.  All this combined, high rheumatoid factor, high CCP, and visual changes in imaging of my bones/joints, the recipe for crippling deformities and pain were already brewing within my body.  It was a scary thought to think I could be one of the patients with RA who's hands and feet were deformed to the point I couldn't work, walk, do the activities of daily living as essential as getting dressed by myself.  If I did not take action now, I was certain to fall into the category of disabled due to complications of rheumatoid arthritis.  I am not ready for that.  Although rheumatoid arthritis does not discriminate against age, I feel and still feel I am too young to be going through this.  

I had two options available to me: first, was to add low dose steroids for a few weeks to months on top of Plaquenil; second, was to start on a biologic DMARD.  For me, this was an easy decision.  My mind was already made up that I did not want to be on steroids.  With this decision, I began therapy with Humira in June 2016.  This is a once every two weeks self injection long term drug.  Getting the drug and the information regarding it is slightly overwhelming.  It's a specialty drug and it is very expensive.  It took 3-4 weeks to get everything sorted out and get my first injection.  Through the Humira drug company, I am participating in the ambassador program which helps alleviate most of the anxiety and stress of the entire process.  From getting your prescription filled, to demonstrating the proper technique of self injection through an online video or a certified nurse coming to your home for hands on training, to your first injection, and even being your resource for any questions and concerns you have regarding side effects, the ambassador program is such a blessing.  You even qualify for copay assistance to help with the financial burden of such an expensive specialty medication.  For more information regarding Humira and how it is used to treat RA, click on the link below. 

https://www.humira.com/rheumatoid-arthritis

(Humira 40mg self injecting pen, photo of my first injection pen)

 

I currently take Humira in combination with Plaquenil.  This seems to be the drug combination that my body needs.  I am back to doing ALL the activities I love and enjoy.  My symptoms are minimal.  I hope and pray that this is a long term trend and that I am on my way to remission.  At the moment I am going 4 months between appointments with my rheumatologist.  Still having issues with my liver enzymes going up slightly here and there, but nothing as alarming as they were in September 2015. 



The Diagnosis That Changed My Life

June 1, 2015 will be a day I remember my whole life.  That is when I received my official diagnosis of rheumatoid arthritis.  It took 5 months, which is a very short period of time.  There are many people with rheumatoid arthritis who go undiagnosed and or misdiagnosed for years before receiving a diagnosis of rheumatoid arthritis.  I was misdiagnosed in the beginning, but I listen to my body very well.  I knew it was more.  Fortunately, my primary care physician listened to my concerns as well.  He didn’t brush off my symptoms.  He didn’t tell me it was all in my head.  He didn’t throw a diagnosis at me without doing any kind of workup.  It makes a world of difference when you have a great primary care physician like mine. 

My story began probably much earlier than I realize, but when my health regarding my joints started to concern me was in February 2015.  Some of our close friends had moved to a different part of the state, about three hours north of us.  We hadn’t seen them since they left about 9 months prior.  In early February, my husband and I  planned a weekend trip to go see them.  It was so much fun.  We are always cracking jokes and laughing so hard our stomachs hurt.  They have three wonderful, beautiful children that we adore.  There is never a dull moment when we visit with them. 

We were having a great weekend.  I believe we smoked a huge piece of pork that weekend, we drank, we laughed, and just had a great time.  On our last evening there, I developed a pain in my right wrist.  Did I hurt myself?  I am clumsy so I very well could have.  As the sun set and the stars came out, the pain was getting worse.  It had moved up my arm and I could feel pain to my elbow.  Seriously, what the heck did I do to myself?  I was concerned.  I had to go to work in a day or so and my job is 100% computer based.  I wanted to go get seen and within a few hours I could not move my wrist, but I was not going to pay out of network costs for wrist pain.  I decided to suck it up and I would get seen when I return home the next afternoon.  Just when I thought the pain could not get any worse, I was proven wrong.  By the time it came to go to bed I couldn’t move my wrist or my fingers.  I was in so much pain and the inflammation/swelling was the worst I have ever had.  It was so bad, the touch of the sheet on my wrist/hand only exacerbated the situation.  A sheet, really? I was really concerned, but I was dumbfounded because I did not injury myself. 

Upon our return home, I went to the emergency department.  I had to work the next day and that was impossible if I could not move my hand, fingers, or wrist.  I was seen by a doctor who just looked at me and diagnosed me with tendonitis.  The doctor had given me a sling to immobilize my wrist and told me to take Ibuprofen for the pain and swelling.  At the time, this seemed like a very probable, legitimate diagnosis for me.  I am a medical coder, and prior to that I was a medical transcriptionist for 5 years.  Computer work is the foundation of my career.  Tendonitis, carpal tunnel, something I would not be surprised with given my career.   I followed up with my primary care physician.  Some x-rays were done and he agreed with the diagnosis of tendonitis. 

That was February 2015.  After that, the flood gates opened.  I ended up having similar symptoms develop in both wrists, neck, right shoulder, right hip, both knees, and both feet.  This was not tendonitis.  I would be more inclined to believe it was if it was just my right wrist and no other joints were involved.  I knew something more was going on.  My physician started to think the same.  I couldn’t suffer any more at work.  It was agonizing to work through debilitating pain and swelling.  There were some evenings I could not prepare our dinner because I couldn’t cut through a cucumber to save my life.  My husband was such an amazing support through this time.  He learned to identify when I was having issues and he knew I wouldn’t ask him for help and that I would just suck it up.  There were many times he came behind me and took the knife out of my hand and made dinner.  I was disheartened by my struggles.  I was a 27-year-old woman, why is my body doing this to me.  I couldn’t do the things I loved anymore.  I couldn’t hike, fish, make jewelry, and had trouble cooking.  Fatigue and tiredness just overwhelmed me and I was falling asleep at 7/8 in the evening most nights.  During the day I felt like I could take a nap just by putting my head down.  I am the type of person who cannot take a nap so this was surprising.  There was more going on and I knew it was time to do more tests. 

In late May 2015 my doctor decided to run blood work for rheumatoid arthritis.  He mentioned that they would take a lot of blood, and by golly they sure did take a lot of blood.  It was around 12 vials of blood that the lab drew and sent off for testing.  Then, on June 1, 2015 I received a call from my doctor diagnosing me with moderate to severe rheumatoid arthritis.  I went back to see him a few days later to discuss the diagnosis and start medical therapy. 

Quick...What Is Rheumatoid Arthritis?

Below is a quick and easy look at what rheumatoid arthritis is and some facts associated with the disease. 

from http://www.availclinical.com/news/what-is-rheumatoid-arthritis/ click to read more

Hello

This life is hard.  Every day is filled with uncertainty.  How you greet each day is totally up to you.  I choose to greet each day a new.  Yesterday has come and gone.  Tomorrow is yet to be.  Today is what matters.  What are you going to do to make today a good day?  How are you going to spread love and kindness?  We need more of that in this ever changing world.

I have come to feel passionately that happiness is a choice.  It is through many trials and tribulations that I have come to feel this way.  I do not always choose happiness.  I have had some bad days.  The good days, they always outweigh the bad ones. 

I thought I was going through enough with my ongoing infertility journey.  (More on that struggle to come later.)  Dealing with infertility has been a huge emotional struggle that I have been enduring for close to 7 years now.  Little did I know I was meant to go through more.  The test of my strength and courage was not over.  I am one of the 1% of the population who suffer with an autoimmune condition known as rheumatoid arthritis.  My diagnosis was made in June 2015.  I was very fortunate that my diagnosis was made early and that I did not have to suffer being misdiagnosed or undiagnosed as so many others have.  When I was diagnosed, I told myself that I would learn as much as I could about this disease and how it affects me.  I told myself that I would not be defined by my illness, but I would embrace it and not hide from it.  I would not be ashamed of it.  I would not let it consume me.  It is part of me, it is part of who I am. 

Through the ever changing journey to manage my disease, I have become moved by one word: Courage. 

The Merriam-Webster dictionary states that courage means the mental or moral strength to venture, persevere, and withstand danger, fear, or difficulty.  It’s a powerful word with a huge impact.  It all started when I was listening to a song by and Australian female rock singer/guitarist Orianthi.  Part of the lyrics of her song Courage is as follows:

Courage is when you’re in pain

But you keep on living anyway

 

I was moved by this song, especially this verse.  It is the foundation of my life.  Through all I have been through, and all that I am still to face, I choose to be happy and to keep finding courage.  Some days it might just be the courage to get out of bed, others it might be to try something new, or to reach out and show someone love or kindness.  It takes courage to live this life.  I want to share my story, my ups and downs, my feelings, my heart, and my knowledge from my journey with rheumatoid arthritis.  It’s not an easy road to find myself on, but it’s my road.