RA Patients Still GOT IT!

My sisters and I have had the discussion on what Edward Cullen finds sexy. For instance, Edward was supposedly drawn to Bella by her SCENT and not her looks. So does that mean that RA sufferers out there could have experienced a similar draw from Edward? Maybe "draw" isn't the best word to use as he strives to be a vegetarian vampire but might fall off the wagon at any moment and need the real deal!

Hey Edward, You like to dance but not Bella, so much! Good news big buddy, I still have some moves going for me...yup, you should see me dance to my favorite music... "doing the shuffle, the RA shuffle". It looks and is a little painful but sometimes the music just MOVES me! You know what I'm talking about! There is often a bit of noise involved coming from creaking joints that scream, "What the heck are you doing to us now?!" But, as I've never been one to listen - the DANCE goes on! Oh, Yeah Baby! And Edward, another big plus for me...I really LOVE baseball!

More good news - aging doesn't seem to be a factor for Edward where true love is concerned - he thought Bella's granny looked pretty hot in Bella's dream. Does Edward have xray vision or is that just Superman? (I wouldn't want him to see my lovely knee braces). Oh and hey Edward, I could carry your extra things in my walker basket for you. Then again you are incredibly strong so don't need any help in that department. In fact you could carry ME wherever I want to go. Which reminds me, I sure wouldn't mind seeing the views you showed Bella from the top of those huge trees in Twilight :-)

Isn't it fun to dream?

Walkers and Leg Braces

It has been over three years since the RA diagnosis. My new normal is so different than it use to be...I can't help wondering: Where will I be three years from now? Will I still be going to work everyday? Will I still be mobile and walking?

I fell a few weeks ago and ended up in the ER for xrays. The nurse when she checked me in gave me a special bracelet to wear that said "fall risk". I asked her if I could have a box of them so I could wear a fresh one everyday...she laughed like I was kidding.  They prescribed a walker for me to use as needed. Instead of one of those clunky silver things we purchased a fancier version from the drugstore. It has a seat, is bright red (my favorite color) with big wheels, and brakes thankfully! It has allowed me to feel safer taking walks in the neighborhood. If I tire there's a place to sit down...All of a sudden walking the mall won't seem such a daunting task - plus I have a little basket under the seat! Shopping, anyone?

A few days later I was sent to an orthopedic doctor to examine the xrays. He showed me that my kneecaps have moved towards the outside of my knees. It was shocking to see those images. They took me off guard. The doctor said physical therapy wouldn't help. It was how the disease was progressing in my case. NOW I understood the increased discomfort and why my knees feel so unstable.

My RA doctor asked me to start wearing knee braces in the hopes of holding the knees in place and perhaps keeping the kneecaps from displacing further. After the first few days, I adjusted to the bulk and feel of them AND they are helping. Because of the size of my knees I needed large braces but the poor nurse searched everwhere for two in size large but could only find one - so until my next visit I have one large and one extra large. I've discovered that when I wear them on bare skin they grip well and feel supportive but add quite a bit of bulk under my slacks or jeans. I tried wearing them over nylons with a skirt but the texture of the nylons allowed the extra large one to start slipping south - Wouldn't that make a lovely picture and a new way to fall down...I fell over my knee braces!? Explain THAT to the ER nurse or your friends!

I regret to say that the knee pain is not fun and often wakes me at night when my knees pop and move. It is easy to feel anxious over this new development. I have to remind myself that "in everything give thanks to the Lord". Everything means everything...He is holding me fast and if I cleave to Him the fear subsides. Fear is such an enemy to us and pulls our vision away from our Savior and onto the circumstances. "So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand." Isaiah 41:10

You are a woman to LOVE

says Jack...And Diane Keaton, with a perplexed face, asks herself "what does that mean?"

(whine) I wanna go walking on the beach with my sweetie and pick up rocks - white, black or otherwise. Let's go! Hmmm....spontaneity - what a wonderful word. Just BEING together with the one you love. There is nothing quite like it. Especially if that person really "gets" you. Mike and I have had to learn to re-think spontaneity - its called spontaneity with forethought added in :-). Outings take more planning to accommodate my physical challenges. Keeping a sense of humor is very helpful but in all honesty we have both had times of mourning what is lost and what our new reality has become.

Those of you who know my husband Mike know that I am blessed. He is the dearest of men. We are best friends on this journey called life. Sadly, when you have RA, or any autoimmune disease, it doesn't just affect you. It affects your spouse too. Mike has had to take days off work to drive me to the doctor; he helps with housework chores that I can no longer manage (i.e. scrubbing the tub); he does the majority of the grocery shopping and has cooked many meals. He has managed to sleep beside me on my worst pain filled nights - loving me and praying for me. Maybe it is harder on the caregiver, when a flare is occurring, than the recipient of that care. I don't know the answer to that but sometimes I fear it is true.  But Mike has set his mind to accept the things we cannot change and to let God 'grow him up' through life experiences. He faithfully reads his Bible and encourages me daily and He still feels "I am a woman to love". What does that mean to me? That His love for me is a reflection of his love for God. It means that he has loved me through all the changes and we are still Valentines. For always and forever.

In this blog I just need to express my gratefulness for my husband. For this wonderful gift God gave me in His provision for my life mate. Thank you Lord!  My husband has such a courageous heart for You, Lord! I am truly blessed! ...Honey, I love you!

Put Down the Donut and Stop the Train Wreck!

Well, time to 'fess up'. Since the beginning of October, through sister reunion and on, my eating plan has been a train-wreck! The good thing about this is that there are so many lessons to be learned. For instance, discipline, self-control and responsibility. What had happened is I had gone back to the "diet mentality" which translates to: good times (eating according to plan) versus bad times (being out of control and eating whatever whenever). UGLY!

For several months I was cautious with what I ate. Did the food decrease inflammation? Then it was a good choice. Did the food cause inflammation? Then AVOID at all costs. I felt better with less swelling, more stamina and energy. So good eating and foregoing culprit foods was well worth the sacrifice. The rheaumatoid arthritis wasn't cured but it was more manageable. Here was the natural way to add to my healing and health.

Then, within a short time on the Humira, I discovered something wonderful - it was working! YES! AWESOME! I also found that when I ate a forbidden food it didn't cause me to flare up with pain. YAHOO! So, consequently, one bad food choice led to another and to another...until the train derailed! My body started suffering and inflammation and pain grabbed hold again. Ouch!

So what have I been learning? That now is the time to learn balance. Its great that there are times when I can enjoy sugar, wheat or dairy but beware of my old mindset that causes the train to derail - that old "all or nothing" mentality with eating. For years this was how I was with weight loss diets - This isn't about that anymore. It is about feeling better and experiencing less pain. Thankfully, the foods that reduce inflammation taste great. They are healthy, nourishing foods that heal and build the body. They are the foods that should make up the majority of my diet.

BUT - When there's a special event then enjoy - participate but don't be a train wreck! Get back on track and move forward. I'm in my late 50's and only God knows the number of my days. Wouldn't it be great to know that good choices dietarily could mean I would have the best health possible as the years progress? The answer to that is a resounding YES!

"Blessed is the one whom God corrects, so do not despise the discipline of the Almighty" Job 5: 16

Exercising - My Way

Every RA article you read includes a reminder to exercise. In the days prior to my life changing diagnosis, lengthly walks were one of my favorite pasttimes. There was always so much to see and hear as you walked along enjoying the view and fresh air. If someone asked me what I miss most prior to RA, it would be my solitary walks. It was therapuetic thinking and praying time for me. It was restorative, energizing, and the list goes on...Ahhh!!!!

So now I'm encouraged to continue exercising but I am learning how to modify traditional exercise to an RA friendly version that can be effective for me now. For example:

Exercise #1: Morning stretches- Several years ago, my chiropractor taught me some preventative stretching exercises to help my lower back. I still do these stretches every single morning before getting up. Although the location has changed from the floor to the bed (I'd like to get on the floor but that would mean I'd have to get UP from the floor! Now, THAT would be heart pumping exercise!).

Exercise #2: Standing up straight - who'd of thunk it but that is exercise for me. Getting and keeping my shoulders properly positioned and my back erect takes more effort now and "muscle memory" throughout the day. Anyone who has dealt with chronic pain knows it makes you curl forward - sort of in a self protecting stance. To straighten up with correct posture takes effort and even more effort to maintain. So to me this is exercise to work at throughout the day. "Sit up straight", yup, Mom was right!

Exercise #3: Walking - I still go for walks but sometimes I might need a cane. Now I walk with a slow, deliberate pace instead of fast and energetic like the old days, but believe me I'm still expending a lot of  energy. When time allows I will walk a bit on my lunch hour. There is an area near my office building that is fairly flat and easy for me to handle. The hills of Idyllwild are presently too difficult for me. Strangely I can handle the "up" pretty well but the "down" side is painful on my knees and legs.  AND what goes up must come down!

Exercise #4: Yoga for Arthritis - My younger daughter gave me this great DVD and I can do a few segments of it pretty well. I love the reminder to breathe through every movement. Just breathe! Such a restorative thing to do as I fill my lungs with good air and in the exhale, release tension and pain. Wonderfully restful yet energizing!

It is a treat when we plan a shopping day and I can manage the walking that entails but I have learned now more than ever that we live just one day at a time. I try and enjoy the day out, and though there might be a few rest stops needed, it is wonderful to be with a family member or a friend for the day.

I'll try to keep focusing on God's amazing wonderfulness and see the gift of each day as it is precious and not to be squandered. OOPS! I should add Exercise #5 which is the most important! Keep the Faith!

Learning to deal with Stress

What had caused the RA gene inside of me to activate? Was there anything I could change in my lifestyle? How about stress? RA is very stressful due to the pain, swelling and demands on your physical and emotional self. And stress is an inducer to flare ups so one of the first things I focused on was how was I handling stresses in my life?

Everyone has issues that cause stress - family dynamics, our job, finances and life in general...but was I internalizing stress or was I truly a prayer warrior AND trusting in the Lord for His faithfulness? Go to the Word - that is where all answers can be found. I started challenging myself on whether I was a hearer of the Word or a doer of the Word. Now that I was faced with dibilitating health issues it challenged my faith on a whole new level. I must continue to stand on the promises of God. This doesn't just happen it takes practice and perseverence and continual reminding to yourself. Did I grasp that suffering was not something to fear but a way to draw me deeper into fellowship with my loving Savior? His Word IS truth! So the scriptures that I read began to take on stronger deeper meaning. What did I have to fear? Fear is a huge stressor. Fear of the unknown. We all deal with this but we can grow more and more victorious through this. God never fails. He is never surprised at what is happening. He never says - "Whoa, what happened here?" He is omnicient, omnipresent and omnipotent. Did I realize that I control very little in my life but He controls everything all the time! There is a saying "focus on your problems and God seems small, focus on God and your problems are small". This is so true.

What is helpful to me that you might want to try if you haven't already, is to write down scriptures that speak to your heart. Tape the verse on your mirror or put it in your pocket to take out and reflect on several times a day. How helpful these steps proved to me because pain makes you forget quickly and pulls your focus. Fight the good fight of faith and use tools that are helpful to you on the battleground. We can know victory and peace - HIS peace that passes our frail human understanding. Of course I continue to pray for physical healing but nearly three years into this I can truly say, "Thank you Lord! I am grateful for the journey you are taking me on!" We can learn so much that we could never grasp during easy times. How fresh is the fragrance of the air after a storm, and rain and storms are necessary to keep things cleansed and watered. He has been cleansing and watering my soul - calling me to fellowship in His sufferings. This suffering of mine is small and insignificant in comparison to what He did for me on the cross. Yet He is always present and guiding me through every challenge.Thank you Lord!

The next thing I started trying to be aware of is to relax as much of my body as I could. Pain causes surrounding muscles and areas to tighten and I realized I needed to work on this. Good old Lamaze! BREATHE - deeply - BREATHE and release my muscles. This is challenging when there is pain but extremely helpful to aid our bodies towards rest.

SIMPLIFY - 'Keep it simple' is one of my husband's favorite sayings. Just ask our two daughters! Learning to simplify is key to dealing with RA. There have been days that getting through a work day uses up all my strength. So that means resting as soon as I get home and heading to bed with the chickens! Thankfully, my husband has been super understanding about picking up dinner on his way home or stopping at the grocery store if necessary. He is my hero! 

Another way to simplify is learning to prioritize family, church and work events. I love my grandchildren so much! But some days I must watch them play and love them from the armchair rather than playing a game on the floor. (Wait, what was I thinking? I can't get up from the floor without leaving all grace and dignity behind) So, thank goodness for books and that all three of my grandkids love to sit and read.

Be flexible with your lifestyle - My husband and I now leave functions early or beg off events entirely if my body is not up to cooperating. I had always been an avid walker prior to contracting RA and now there are days where walking through the grocery store feels like I have accomplished a great physical feat! I appreciate grocery carts in a whole new light - they work as excellent walkers!

The last thing I want to share is to give yourself permission to mourn, cry and lament when absolutely necessary and then get back on the trail of acknowledging God and His call on your life as soon as possible. Remember there are so many people who are in similar, and sometimes far more challenging battles than you are. Count your blessings my dear sisters and brothers and never ever give up!

Adventures in Medication

As all of us with RA know the medication aspects of the journey is fraught with trial and error. I am one of those awful people who didn't write all the medications I've tried down. What I can tell you is there have been several and for some reason all the meds have 3 or 4 syllables and are full of q's and x's and z's. What are the drug companies thinking?

The medications that have remained constant through the journey are methotrexate and prednisone in varying dosages. The prednisone ups and downs are challenging and, for me, I'm one that has to withdraw extra slowly. Sometimes half a mg. at a time for a few weeks, and then drop another half a mg. Currently I'm at 7 and hope to get down to 5 which is suppose to be my maintenance dose (if I can't successfully go lower). My goal for a long time was to hit 0 mg of prednisone but that has not been possible so my attitude has changed. 5 mg. sounds fine now and that little pill really work wonders despite the many side effects. It has proved to be a necessary evil for me.

In fact that's mainly the lesson learned that I want to share - my medication attitude adjustment. All my life I had not been one to take OTC medications except on rare occasions. Now they were prescribing things I couldn't even pronounce with long sections on side effects the pharmacist hands you. Wow, how things had changed. Don't you love the commercials for medications that show a person running through the field with balloons and flowers, while the announcer is telling you all the horrific side effects? So for some time I have been trying to reduce medications and dosages with the hope that medications would be entirely done away with because those side effects sound as bad as what you're taking the drug for! However I have had to learn that, for me, RA with medications WHILE doing all I can dietary wise is OK too. After all, functioning and maintaining my life is one of my main goals. It isn't about the medications. It is about continuing to trust in God. He is ALWAYS in control. Haven't I been striving to practice living in Thankfulness? "In everything give thanks for this is the will of God in Christ Jesus for you" (I Thess 5:18). The RA, the medications, the whole experience was to be enfolded in thankfulness to God. Counting my blessings can only improve my spiritual vision.

Now for the two medication biggies: Enbrel and Humira. I was on Enbrel for the past year. At first the Enbrel was hugely helpful but gradually it helped less and less and the flare-ups were very active and long. Recently the doctor switched me over to Humira and I've had two doses of that so far (once a week). She said it might be 3 - 6 months to know if Humira would be successful for me and so far so good.

When the doctor switched the prescription she assured me that Enbrel was just like Humira and I would have no trouble administering the injection. However, when I picked up the Humira and saw how different the "pen injector" looked, my confidence didn't equal the doctor's so I requested a nurse visit for assistance. No problem! The nurse could see me right away. Together, we looked over the numerous instructions (Enbrel had 4 steps this one has like 17!). The nurse said this was new for her too and pretty soon we were laughing at the over-kill on the steps! For instance, 'hold injector pen purple side up and check if fluid is full'. The next step said 'hold injector pen gray side up and see if fluid is clear'. Were they serious?! Who edited this instruction pamphlet? By now we were really losing it and started dramatizing the steps so it only got worse from there. At last, through the giggling, the shot was administered.

When I came out of the nurses office, my daughter (who had driven me to the appointment due to my hands being 'out of order' because of an RA flare up) looked at me incredulously and asked "what were you doing in there? I could hear you laughing". So to end this blog I will say that,  if its true that laughter is the best medicine I should be feeling GREAT! I promise to keep you posted!

The Discovery

Nearly three years ago I developed a bad case of the flu that lasted longer than any other bout of flu I had ever experienced and it left me extremely weak and lethargic.  After recovery I continued to feel ‘slightly off’ and in need of lots of rest, etc. Then it hit again. This time I could hardly move in bed. The bed covers felt like they were made of lead. Getting up and down to the bathroom took huge effort. What was happening to me? Every movement was both painful and challenging. My husband had to assist me in the simplest tasks. Time to go to the Doctor!

The blood tests revealed I had Rheumatoid Arthritis. My immediate thought was – how bad can that be. Arthritis? People live with that everyday and this is not bad news at all. But after spending time with the doctor and doing my own research into the illness I began to realize that my life, as I knew it, may forever be changed.

Now came the trial and error of medication after medication. Every new med was to be given 3 – 6 months to determine if it was effective. This meant possibly 3 – 6 months of near immobility and challenging pain as the diagnosis advanced quickly to ‘moderate to severe RA’.

I was still working as an administrative assistant in a private school. Rising very early in the morning I would laboriously get ready for work. Miraculously I missed very little work and this is with great thanks to two dear co-workers. These dear women were so sensitive to my challenges. My office was upstairs and we rigged a way for me to pass papers down to the first floor when copies needed to be run, etc. If I was too weak to go to lunch they would bring me something from the cafeteria. Thank you to these dear women that I couldn’t have done without at this difficult time of adjustment.

Speaking of adjustment, anyone who has faced physical illness or chronic pain knows there are times of great fear. We also mourn for life as we knew it; having to deal with the learning curve on how to get things done with this uncooperative body and then, at last, the peace of acceptance. This cycle repeats itself again and again. Yet we steadily see that as a Christian, God’s Word is our anchor. I learned to memorize scriptures to repeat to myself during the long nights as I struggled to sleep through the pain. Psalm 34 and Psalm 103 were among my favorites and I worked to memorize these passages. Without God as my strength where would I be? He suffered for my sins and He was with me in this dark valley. I learned to hang on tight to His hand and focus on Him as Lord of my life and even as I continued/continue to pray for healing, I discovered afresh that HIS GRACE IS SUFFICIENT! I will trust and submit and rest in Him.