A Bumpy (Lumpy) Ride!

What is this ugly lump on my hand? The first time I found one of these new strange lumps it was on my palm so I thought it might be a ganglion cyst. It wasn't painful except when I bumped or pressed it. I asked the doctor about it but she really didn't have any comment to offer me at that time. She just looked at it and gave a slight nod then wrote something on her ever-present computer. A friend of mine who is a nurse said in the olden days the treatment for ganglion cysts was to smash it with a heavy book. OUCH!

Shortly thereafter a lump appeared near my right elbow and at the same time my left elbow started to grow a twin. Good grief! This meant I could no longer comfortably lean on my elbows. Time for researching on the intenet. I discovered these lumps were a side effect of RA that many of us deal with. Since that time I have developed a few more nodules, especially in the joints on my hands. I no longer feel a sense of panic. Sure I don't like them but what can I do?

Sometimes I say to my husband "Why...?" followed by whatever is concerning me at the time (why this lump?; why am I so tired?, etc.). He answers patiently, "Honey, you have RA and this just comes with the territory." So I guess we are blazing new territories in our lives and will just have to figure it all out as we go along! It is called LIFE. Time to remind myself that "THIS is the day that the Lord has made, let us rejoice and be glad in it!"

My Profit and Loss Margin

Is my glass half full or half empty? I was thinking about some of my losses and gains through the experience of dealing with RA and I wanted to share my reflections on the subject:

Here's what's lost:


long walks
the ability to get up easily from a chair
getting down on the floor to play with grandkids
some of the grandkid games that grammas play with them
energy and stamina to cook a big family meal
energy and stamina in general

Here's what I still have:

I can still walk - just not as far
I can still sit in a regular chair
I have grandkids and they love me (the feeling is moo-choo-wul)
There are plenty of games and activities I can still do with them
They take naps so I can take one at the same time
I am blessed with a dear husband, my family and dear friends
I can still cook and there is always "take out"

Here's what I've gained:

Realizing how many people love and support me
Increased creativity
Drawing closer to our dear and loving Lord
More compassion for those who are down and suffering
Deeper understanding of the Scriptures
Better realization of what really matters
More appreciation for each new day
More thankfulness for the day that has passed
    (as I retire for the night in my comfy bed)
Realizing that a merry heart really is like medicine (Prov 17:22)
Deeper love for my family and friends
More grace for how others, and myself, journey through life
     (and to have patience with the process)
Learning to trust the Lord more

So looking at these lists and seeing how much longer the last two are brings a tear to my eye and gratefulness to my heart. If these lists were placed on an old fashioned scale it would tip in the favor of GAIN!! I may have lost certain things but am so grateful for the lessons I am learning. Thank you Jesus that You are always with me and You have promised to "Never leave me or forsake me".

Please share a comment on your profit and loss margin - I would love to hear your thoughts. HUGS!

Bless the Lord oh my soul! Let all that is within me bless HIS holy name! Psalm 103

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

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.