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!

Sunday, March 24, 2013

I'm Baaack!

Seriously...December 2011?  Geesh, where has the time gone? I have really missed my blogging and am recommitting myself. Let's catch up...2012 brought on tough business and financial changes for our family.  My husband sold a company and switched jobs.  I started running a little side business called Apericots in our basement which has been fun but BUSY!  After 12 years of focusing only on raising my kids I have loved something to call my own. There is something about receiving that paycheck with my name on it that has been so rewarding! Don't get me wrong...being a mother has its paydays...they are just spaced a little further apart and come very sporadically...but oh so worth it!  Adding a work schedule into my busy life of gymnastics, piano, soccer, dance, preschool, field trips, carpooling, homework, church calling, playgroups,etc has had its challenges. It has been a challenge to stay balanced. Unbalanced life in the past has usually led me into a flare up of my RA in one way or another.  I was pleasantly surprised that I kept it together for so long.  Exercising became a priority.  I always feel better when I exercise.  I was actually back to working out hard...I found a cross fit class that kicked my butt 2 days a week and I was putting on muscle.  Yoga has become a staple on my stressed out days...LOVE IT!  Overall I had a busy, wonderful 2012 and was actually cutting down on my Methotrexate and had also switched to the oral pill vs the injection.  The injections still make me so nauseous the day after my shot but the pill form not so much.  Then I got pneumonia in October and totally went downhill.  I had two courses of heavy antibiotics which left me with yeast infections to cope with for months...yuck! Note: Never take antibiotics without a pro-biotic of some sorts!
Enzymatic Therapy Acidophilus Pearls Probiotics, Capsules - 30 ea
 My ribs hurt for months after from all of the coughing and I just could never get going again.  Then I started having problems with my shoulders and wrists and wallah I was back on my MTX injection again going up in dosage...not down.  BUMMER!  My Dr. thinks that I don't absorb the pill form of MTX as well which led to the flare up and so I'm really on a mission to increase my absorption in my gut.  I've been studying topics like Leaky Gut Syndrome, Gluten Free Diets, and Juicing.  I've always had stomach issues since I was a baby.  Some doctors have called it gastritis, leaky gut, irritable bowel, etc. I'm still unsure what is up with my gut but am CONVINCED it is linked so closely with my autoimmune problems.  My husband read the book Wheat Belly and has encouraged me to go gluten free to see if it helps heal my insides. 
Front Cover
I started eating gluten free as of January 1, 2013 with only minimal slipups :/  It hasn't been too bad but I have not noticed anything drastically yet.  What I have learned about my diet is how carb heavy my diet was.  I realized that I always turned to crackers, granola bars, chips, pretzels, toast, etc for my snacks vs veggies, fruits, proteins or nuts.  That has been eyeopening! The thing that has helped me the most is juicing.  Every morning the first thing I give my body is a nice kale, cucumber, spinach, apple, beet, carrot, ginger, and celery juice from my Jack LaLanne juicer...Delicious right?  Believe me, your body gets used to it and you will see results quickly.  I'm a believer. I watched a documentary Fat, Sick and Nearly Dead on Netflix and it was crazy!  These two guys were really overweight and had urticaria, an autoimmune disease.  Surprisingly they were on my exact meds and were off all of them with no flare ups by the end. So this is where I am at currently: juicing, gluten free, trying to exercise and get back to my cross fit class soon...still researching...still medicating...still sore but hopeful.  My RA has truly been a journey.  Every little discovery about my self, every high point/low point, every person I meet with this disease, every book I read, every yoga class, etc is leading up to something right? I believe so!

Thursday, December 8, 2011

Yoga Anyone?

If RA has taught me anything it is that life is a constant journey of discovery and that journey is full of highs and lows. One moment you are full of inspiration and on top of the world, the next discouraged, scared and pessimistic. That is exactly what happened after writing my last post...thinking I had this all figured out, only to discover after publishing that post, that 2 people on my blogroll of 20 had died from their diseases. I am no mathematician but even I know those are pretty scary odds for us. This stuff is real. Gitz and SuperB*^ch thanks for sharing your lives with me.
Something I have discovered lately is yoga. It really has helped me in so many ways. First, your body feels terrific after gently stretching and bringing warmth to all of your joints. It brings oxygen and energy to every part of your body. I really am feeling good and feeling stronger. Second, yoga is teaching me how to live in the present. Focusing on my breath and bringing all of my awareness to the present moment has made me realize how much of my time is spent worrying about the past or future. Live in the present, its the best place to be! Next, it provides a peaceful atmosphere where I am free to discover myself and let my thoughts flow freely. Yoga teaches respect for one another and honors a divine power/light in each of us. There are no feelings of competition or judging, it is just you and your mat. I am loving it and I challenge you to try it. There are some great free videos on the Yoga Today website. Start in your own home or find a studio with classes.
With the holidays upon us I am trying to stay grounded. Simplify, simplify, simplify! It is always a struggle for me to schedule only those things that are worthy of my time and to let the other "fluff" go. It is a tricky balance that comes with discovering your true and deepest intentions. Until I find that balance (hopefully one day)...I will enjoy this journey and be patient with myself. A happy holiday season to you all! Namaste

Tuesday, September 27, 2011

New Beginnings

Things are good. I have had some incredible things happening in my life lately that I must share. Sorry for neglecting my blog all summer. BUSY!!! I have missed many of my blogging friends and have been thinking of you. With the kids back in school and somewhat of a fall schedule settling in, I turned to my blog roll one afternoon. I now have two kids in school, 1 in preschool and 1 baby who is still napping at that same time which equals 4 hours of me time a week!!! Slowly but surely a new world is opening up to me. Anyhow, I came across a comment from 'Mommy with Rheumatoid Arthritis' where she suggested a book to me. It is called When The Body Says No by Gabor Mate. I ordered it immediately. It arrived on September 20 and I can't put it down. It is changing the way I look at everything in my life!
One thing I have always noticed when I meet others with RA is that they are the people whom I would have least expected live with chronic pain. They are happy and bubbly and seem to have everything under control. They don't complain. I've often wondered if a certain personality is prone to getting RA. My doctors have always asked about my family history but never wanted to know much about me as a person. I don't have any relatives with RA anywhere. One aunt did just pass from Scleroderma but that is it. It has always left me feeling like there is more to this disease than just unlucky genetics but I've never been able to find anything supporting these feelings...until now.
This book addresses insights into how disease can be the body's way of saying no when we cannot or will not and teaches steps to start healing. It has forced me look closely at my life and the dominating personalities in it. Who can I not say no to? What feelings am I constantly repressing? I've lived a life full of pleasing others...which is funny that I mentioned that in my last post. Everything in my life lately has been leading up to me receiving this book. I was being carefully prepared for this time.
It is amazing as I look back at my RA history... When my RA has flared up, without fail, they are times full of unimaginable stresses that I put upon myself and strong repressed feelings, usually of anger. They are times where I have perceived myself as having no control over anything in my life. It's as if I'm a pawn in a game, totally at the mercy of others. When I went into remission for 5 years it was when I moved away from all family, friends and anything familiar. I knew nobody and I thrived in that environment. It was a new beginning where I was in charge and living my life according to what I felt was best for me and my family.
This has been a very hard discovery because I have always seen my family and extended family as being good support and full of good advice. However, it is so obvious now that I've read this book, that so many times the things I do in a day are for them and not me. We once again live close by both families. Including all of our brothers and sisters...6 kids in my family and 6 kids in my husbands family! We all live within 20 minutes of each other! Why do I feel so dependent on them? It is not a coincidence (nothing in this life is) that the day I received this book in the mail was the day my parents left for a religious service mission to Sweden. They are gone for 18 months. I have been very nervous about them leaving. My mom and dad have been a huge help with my health. They have helped with my kids on days I just could not face alone. What would I do without them if my health was to take a bad turn? Could I really survive without them? YES I can and I will! This time is a gift for me to discover myself. Everything in my life has been for others and its time to find me and connect with my voice and find the courage to follow that voice.
I have been on fire with energy and clarity since reading this book. At the same time I am scared to death. It is hard to look at the very foundation of your life and have to question "Is this good for me?" Things like religion, family relationships, hobbies, goals, etc. are being examined and I feel empowered. I feel strong. It is no coincidence I just received an email informing me of a National Campaign that launched today called Managing RA: The Strong Woman's Approach. www.HealthyWomen.org/RA I feel like inspiration and knowledge is flowing freely to me right now and every direction I look, my questions are being answered! It is a new beginning for me and I can't wait to share my journey with you! God Bless!

Sunday, July 10, 2011

Summer Update

We got a puppy! My husband caved and we became owners of a morkie puppy (Maltese and Yorkie mix) Her name is Bella. House training a puppy is hard but house training a puppy with giarrdia is IMPOSSIBLE! She is really starting to grow on me now but we had a rocky start. On top of that we had a really wet spring with lots of storms and changes in pressure going on. May was a rough month. I didn't feel that great. Bummer because I went into spring with such high hopes. My rheumatologist and I decided to add Sulfasalizine to my regimen in April. I was hoping that would be my magical medication since I did so well on it before. I haven't seen much improvement. My summer eating habits haven't helped either I'm sure. It is so hard to eat well with all of the kids home. I'm toying with the idea of going to see a nutritionist. Any thoughts? Her name is Ursula...should I be nervous?
Summer is in full swing and passing much too quickly. The kids have me going, going, going and I hardly have time to assess my condition. My hands, wrists and shoulders alternate in flares. Swimming has been wonderful and I have found some new aerobic and yoga classes that I LOVE. I do so much better when I stay active. Overall I feel that I am pulling off a great summer this year! As I watched fireworks this year on the 4th I had a flash back to last years fireworks...I could hardly pick myself off the ground afterward because I hurt so badly everywhere. I was filled with gratitude for my improvements and was motivated to keep fighting!
Life is good, not perfect by any means but good and I'll take that. I think the thing I struggle with most lately is reconnecting with myself. I feel like I have lost touch with who I am and what I enjoy doing. I think children have a lot to do with that. It has been a long time since I could make a decision based on what I would like to eat, watch, listen to, do, etc. Don't get me wrong, I would never change the fact that I am a mother. It's what I've always wanted to be. My children are my everything! They are making me into a better person. But what happens when they are grown and leave? Who am I then?
I am also realizing that I am a major people pleaser. I have always lived my life to please others, parents, teachers, friends, neighbors. It is hard for me to say "no" when that is what I really want to say. I make every decision with everybody else in mind and how this decision will effect them vs me. I can't even make a playlist on my ipod without thinking "what if so and so hears this? Would they approve?" When my husband and I go out to dinner I always say "Oh anything sounds good, I don't care, you choose." when in the back of my mind I always have somewhere I want to go. I know these are stupid little examples but they are bugging me lately. I have decided to make a list about things I truly like and enjoy. It has been harder than I thought. Wish me luck in my adventures of 'Finding Kelli'. Until then we'll take some advice from Finding Nemo and "just keep swimming, swimming, swimming" Things always work themselves out, right?

Tuesday, April 26, 2011

Aunt Joyce

This is my Aunt Joyce who just recently passed away. She endured a LONG battle with scleroderma and fought with grace. It was so hard to watch her body wither away from this terrible disease. I know her body is free now and she is in a better place with no pain. She is the only relative close to me with an autoimmune disease. I felt a connection with her and I honor her today.
Of course this leaves me pondering on my own fate. Will I live to be 62? How many grandbabies will I be leaving prematurely? Will I be able to hold my grandbabies and be a part of their lives? Such questions and inquiries can leave you down and discouraged and I try to avoid them when possible. My visit to my rheumy today, along with a nice steroid shot in the knuckle, surfaced these questions and emotions in me. I come to my blog today trying to convince myself to focus on today and the beautiful things around me. I know this diagnosis is not the end and I can still enjoy life...right?
I am a religious person but initially didn't want to bring religion into this blog. However, I have been so uplifted by the scriptures and uplifting messages posted on others blogs. I find so much strength from you women who are choosing to stay positive and fight this fight. I don't know how anyone copes with something like RA without a bigger picture and higher power in mind. I recently heard an address on pain by Kent F. Richards who is a physician. He says "None of us is immune from experiencing pain. I have seen people cope with it very differently. Some turn away from God in anger, and others allow their suffering to bring them closer to God. As Elder Dallin H. Oaks has taught: “Healing blessings come in many ways, each suited to our individual needs, as known to Him who loves us best. Sometimes a ‘healing’ cures our illness or lifts our burden. But sometimes we are ‘healed’ by being given strength or understanding or patience to bear the burdens placed upon us.” All that will come may be “clasped in the arms of Jesus.” All souls can be healed by His power. All pain can be soothed. In Him, we can “find rest unto [our] souls.” Our mortal circumstances may not immediately change, but our pain, worry, suffering, and fear can be swallowed up in His peace and healing balm."
In honoring my Aunt Joyce today I also want to honor each of you enduring RA, scleroderma, lupus, fibromyalgia, etc. Keep fighting! Keep living!