Tuesday, June 17, 2014

Enbrel and The Currant Bush

Whelp, that didn't go quite as planned :)  I started Enbrel today.  I tried my best to avoid it: I have been following a gut healing program called the RepairVite Diet at a functional medicine clinic.  No grains, seeds, legumes, dairy, sugars, eggs, nightshades for 6 weeks.  Supposedly, by not eating any of these foods (and taking special supplements) it eliminates all inflammation in the body and allows for healing of your gut and increases immune function. It sounded great!!!  The whole idea is very similar to the Whole30 program. On top of this I was getting Immune Boost IV's twice a week.  How could this not work?  However, I baffled my doctors and immediately started flaring up?!? I grew this nodule on my finger and started having shoulder, wrist and hand problems immediately.  Thinking I was just detoxing I continued for the six weeks with no improvement.  I had to discontinue all supplements due to diarrhea for a month..TMI.  I'm still trying to understand what went wrong...too much meat?  Too many new supplements?  IV's?  May was a stressful, busy month with school wrapping up, too stressful?  Who knows?  I am still sticking to this diet 75% of the time because I believe so much in the reasoning behind the food I eliminated and why.  I am beginning to introduce foods slowly back in and believe I do have a problem with corn, dairy and obviously sugar.  I'll keep experimenting with that.  On a good note,  I didn't get one zit for the whole 6 weeks and so I'll take that as my victory.  I know I sound optimistic and ok now but this whole process devastated me.  It's been weeks of tears and frustration. It is always hard to go at something 110% with a desired outcome waiting for you at the end which never comes and isn't meant to be.  As I have been learning for the past 10 years, RA is a roller coaster of emotions.  This was a hard dip though.
I've been bitter and sad the past few weeks and I don't like being bitter or sad.  Nothing good comes from these emotions...ask my children or husband ;) I'm normally a pretty happy person and so it is frustrating when I get in a funk. RA has given me more funks than I would care to admit to. Most days I have to wonder what good, if any, is coming from this trial in my life? I still don't completely understand why I was given this disease to deal with at age 23.  I can't dwell on this question for too long, it makes me crazy. However, I was at church Sunday and received a beautiful message in my Sacrament Meeting by a young girl who recently lost her younger brother (10 years old) this year.  It is called the Currant Bush by Elder Hugh B. Brown:

You sometimes wonder whether the Lord really knows what he ought to do with you. You sometimes wonder if you know better than he does about what you ought to do and ought to become. I am wondering if I may tell you a story that I have told quite often in the Church. It is a story that is older than you are. It’s a piece out of my own life, and I’ve told it in many stakes and missions. It has to do with an incident in my life when God showed me that he knew best.

I was living up in Canada. I had purchased a farm. It was run-down. I went out one morning and saw a currant bush. It had grown up over six feet high. It was going all to wood. There were no blossoms and no currants. I was raised on a fruit farm in Salt Lake before we went to Canada, and I knew what ought to happen to that currant bush. So I got some pruning shears and went after it, and I cut it down, and pruned it, and clipped it back until there was nothing left but a little clump of stumps. It was just coming daylight, and I thought I saw on top of each of these little stumps what appeared to be a tear, and I thought the currant bush was crying. I was kind of simpleminded (and I haven’t entirely gotten over it), and I looked at it, and smiled, and said, “What are you crying about?” You know, I thought I heard that currant bush talk. And I thought I heard it say this: “How could you do this to me? I was making such wonderful growth. I was almost as big as the shade tree and the fruit tree that are inside the fence, and now you have cut me down. Every plant in the garden will look down on me, because I didn’t make what I should have made. How could you do this to me? I thought you were the gardener here.” That’s what I thought I heard the currant bush say, and I thought it so much that I answered. I said, “Look, little currant bush, I am the gardener here, and I know what I want you to be. I didn’t intend you to be a fruit tree or a shade tree. I want you to be a currant bush, and some day, little currant bush, when you are laden with fruit, you are going to say, ‘Thank you, Mr. Gardener, for loving me enough to cut me down, for caring enough about me to hurt me. Thank you, Mr. Gardener.’”

Time passed. Years passed, and I found myself in England. I was in command of a cavalry unit in the Canadian Army. I had made rather rapid progress as far as promotions are concerned, and I held the rank of field officer in the British Canadian Army. And I was proud of my position. And there was an opportunity for me to become a general. I had taken all the examinations. I had the seniority. There was just one man between me and that which for ten years I had hoped to get, the office of general in the British Army. I swelled up with pride. And this one man became a casualty, and I received a telegram from London. It said: “Be in my office tomorrow morning at 10:00,” signed by General Turner in charge of all Canadian forces. I called in my valet, my personal servant. I told him to polish my buttons, to brush my hat and my boots, and to make me look like a general because that is what I was going to be. He did the best he could with what he had to work on, and I went up to London. I walked smartly into the office of the General, and I saluted him smartly, and he gave me the same kind of a salute a senior officer usually gives—a sort of “Get out of the way, worm!” He said, “Sit down, Brown.” Then he said, “I’m sorry I cannot make the appointment. You are entitled to it. You have passed all the examinations. You have the seniority. You’ve been a good officer, but I can’t make the appointment. You are to return to Canada and become a training officer and a transport officer. Someone else will be made a general.” That for which I had been hoping and praying for ten years suddenly slipped out of my fingers.
I saluted out of duty and went out. I got on the train and started back to my town, 120 miles away, with a broken heart, with bitterness in my soul. And every click of the wheels on the rails seemed to say, “You are a failure. You will be called a coward when you get home. You raised all those boys to join the army, then you sneak off home.” I knew what I was going to get, and when I got to my tent, I was so bitter that I threw my cap and my saddle brown belt on the cot. I clinched my fists and I shook them at heaven. I said, “How could you do this to me, God? I have done everything I could do to measure up. There is nothing that I could have done—that I should have done—that I haven’t done. How could you do this to me?” I was as bitter as gall.
And then I heard a voice, and I recognized the tone of this voice. It was my own voice, and the voice said, “I am the gardener here. I know what I want you to do.” The bitterness went out of my soul, and I fell on my knees by the cot to ask forgiveness for my ungratefulness and my bitterness. While kneeling there I heard a song being sung in an adjoining tent. A number of Mormon boys met regularly every Tuesday night. I usually met with them. We would sit on the floor and have a Mutual Improvement Association. As I was kneeling there, praying for forgiveness, I heard their voices singing:
“It may not be on the mountain height
Or over the stormy sea;
It may not be at the battle’s front
My Lord will have need of me;
But if, by a still, small voice he calls
To paths that I do not know,
I’ll answer, dear Lord, with my hand in thine:
I’ll go where you want me to go.”
(Hymns, no. 75.)
I arose from my knees a humble man. And now, almost fifty years later, I look up to him and say, “Thank you, Mr. Gardener, for cutting me down, for loving me enough to hurt me.” I see now that it was wise that I should not become a general at that time.  I haven’t amounted to very much as it is, but I have done better than I would have done if the Lord had let me go the way I wanted to go.
I wanted to tell you that oft-repeated story because there are many of you who are going to have some very difficult experiences: disappointment, heartbreak, bereavement, defeat. You are going to be tested and tried to prove what you are made of. I just want you to know that if you don’t get what you think you ought to get, remember, “God is the gardener here. He knows what he wants you to be.” Submit yourselves to his will. Be worthy of his blessings, and you will get his blessings.

With this story in mind I had an appointment with my rheumatologist and decided to take the leap of faith to Enbrel. I had my first injection today. Methotrexate, Plaquenil and Sulfasalazine have given me 10 good years of life. We have had two more daughters since my diagnosis and I have been able to actively raise my four girls since. No doubt, I absolutely have to be thankful for modern medicine and the quality of life it has given me. I continue (and will forever) to research and work on new diet and exercise strategies that support the healthy lifestyle I long for. I am beginning to conform to the idea of my RA not going away...my doctors have told me this from day one, I just thought I was special. Some of us are not meant to be healed no matter what degree of faith and commitment are exercised. Some of us will keep fighting the fight by not letting fear and frustration keep us from living and wanting more out of life. I will continue on with optimism not bitterness. I found this little gem also this week and have looked at it often...

The worry of dying early from the side effects of my meds still consumes me. However, I can't live in fear of something that none of us have control over. When I die I have to trust it will be my time and I will be given the amount of days on this earth to accomplish what I need to. That is where my time and thoughts need to go...what can I do today...what do I want to accomplish? Things will work out. This is just a new chapter beginning in my RA adventure. How I wish this was a Choose Your Own Adventure book and I could flip to page 27 where my disease was mysteriously cured and I was living on some tropical island eating all the sugar cookies I wanted. Who knows...maybe?

Monday, March 3, 2014

I'm Fine...Really!

It has been a long time since the last blog session.  That is always a good sign for me.  When I feel good I'm busy out living life to its fullest but as soon as frustration or flares creep in... I'm back.  I'm actually coming off one of my best winters ever since having this disease...minimal flares,no steroid shots and no pneumonia like last year!  I thank my gluten free diet, juicer, Vitamix and change up in exercise for this wonderful year.  I am actually doing cross-fit classes at GPP.  Check out their website GPP Fitness  There have been many, MANY workouts I have finished and cried the whole way home because my body is doing things I was told I would probably never do again. I LOVE IT! I am gaining my confidence back and getting strong! I was feeling all good about myself when a few months ago my rheumatologist decided to check my hands with some xrays.  My xrays came back showing further damage occurring in my hands. Bummer! I was so surprised and have been on a mission ever since to try to convince my doctor that I'm fine and feel great!  She decided to draw some blood and run a fairly new test called the Vectra DA that would show us how active my disease is in my body.  It came back moderate to severe...WHAT THE?  I'm so confused.

So here I stand at a crossroads once again. Dr. Dames would like me to start on Enbrel right away and keep taking all of my other meds too.  Enbrel doubles the size of my ever growing list of possible side effects and I hate that!  I posed the argument to her that I am too young to take that chance of so many possible side effects because sooner or later I will get one of them...why not just live with RA and all the fun stuff that comes with that alone?  She argues back that because I am young I need to be proactive and do everything I can to avoid disfigured joints and disability. Awesome...one of those no win Jack Bauer 24 decisions huh?

Side note.  I argued with my rheumatologist!  That is a little victory in and of itself.  I actually stood up for what I was feeling and expressed frustration.  I've always just gone with what the doc says and vented to my husband and mom when I returned home.  I'm pretty darn pleased with myself. This is big people.

Back to my dilemma...I have 3 months and then I will retake the Vectra DA test.  My rheumatologist has increased my sulfasalizine dose to twice a day to see if that will help.  If results come back again in the high to moderate range I need to seriously consider getting on Enbrel.  If I was sore and hurting I would be all over this but I'm not.  I'm fine and actually feeling great: no morning stiffness whatsoever and full range of motion in all of my joints.  When big storms come in I do feel it in my shoulders...I hate those subtle reminders that yes I am sick and have a chronic disease that won't go away. Not to mention every Tuesday I get a reminder in the form of nausea from my methotrexate injection.  That stuff still makes me so sick.  I swear my body is trying to tell me "this stuff is bad...please don't put this in me!"

Plan of action: There is a man who lives by me who is controlling his RA by diet and herbs alone.  He swears by this tea concoction that he found and is convinced that first I must heal my gut lining and then this tea will eliminate all of the harmful inflammation in my body.  Heck what do I have to lose?  I'm pretty curious and excited to give it a go.  As I read through all of this info he has given me I will share this new part of my journey.  November 2013 marked my 10 year mark with this disease. My RA truly has been a journey...a journey of physical, spiritual and mental health, a journey of self discovery and reflection and a journey of appreciation and gratitude for the beautiful things in my life. I am happy and content with where I am in life...If only my body would get the memo that I am FINE!