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!"

Decorating the Moon

When you get a flare-up of an auto-immune disease one of the first things the doctor prescribes is more prednisone until things get back under control. Those of you who have had this miracle drug know that with it comes a few negative side affects. One of them might be that you find your face has lost its natural contours and is now round until you taper back off the prednisone. This side affect is called "moon-face". All of a sudden, almost overnight, you look like you've put on several pounds and your face is all puffed up. Gosh, I wish the doctor would prescribe me my own make up artist!

But seeing how that is NOT the case and life must go on, I need to get ready to face the day. I've worn make up for years and for those of us who use these wonderful products it means on occasion we have to "decorate the moon". First, I study my face in the magnifying mirror - an added horror as I observe the swollen cheeks and sunken eyes, but a magnifying mirror is necessary at my age due to reduced vision! Oh well, on to the make up...after I put on foundation its time for some special affects. Where are those cheekbones for the cosmetic blush? Let's see, they should be about right here an inch or two under the eyes; which are sunken in a bit by the swollen flesh of my moon-face, but I forge on! After some deliberation I carefully place the blush to define some cheeks and create definition. (By tilting my head up and slightly to the side I can imagine I've succeeded in achieving the desired affect). Now it is time for eye make-up. Oh oh, with those sunken in eyes and dark circles it means I need to resort to a little concealer magic. Finally, a bit of lip color, add earrings and voila! I'm ready to face the day.

Recently I bought myself a great pair of sunglasses. Isn't it great that large sunglasses are back in style? Now if I could just see where I was going with them on indoors that would be terrific!

Maybe what I need to work on isn't my make up but instead is...I Peter 3:4 "Do not let your adornment be merely outward—arranging the hair, wearing gold, or putting on fine apparel, rather let it be the hidden person of the heart, with the incorruptible beauty of a gentle and quiet spirit, which is very precious in the sight of God."

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!

Our day in Court

Living in the mountains we burn our wood burning stove all winter long. Mike likes to get his permit every year and get out in the woods with his chainsaw bringing in the wood to keep us warm. Men and power tools (i.e.chainsaws) is adrenaline pumping good clean fun! Until...Mike recently got in trouble with the forest service for chopping down a dead tree - a federal offense. He had thought the law stated "dead or down" trees but it was dead AND down trees. So off to court we go. Thankfully the court was lenient and Mike received a $75 fine and court fees of $35. A total of $110. Ahhh! We both breathed a sigh of relief on that one!

After we left the courthouse we happily headed to our car where I noticed something sticking under the windshield...and you guessed it, a ticket! We were parked in a handicap space and my handicap placard had expired 3 days before! The ticket was for $360! Good grief! We headed over to the office that had issued the ticket and pleaded our case. I thought it was good through the end of October! An honest mistake on my part so we wanted to try and see if we could get a lesser sentence. We will find out in 2 to 3 weeks what the verdict is.

I told my sisters, Mike and I try our best to stay on the right side of the law but here we were in one day dealing with two offenses. Who were we Bonnie and Clyde? My sister, Marcia said, and I quote: So let me get this straight....you are envisioning that Bonnie and Clyde would have gotten OLD enough to even want to cut down a DEAD tree and then get CAUGHT chopping down said dead tree and that Bonnie would have WANTED to go to the courthouse with senior Clyde where she gets CAUGHT with an expired HANDICAPPED sticker in the getaway car...

Well put it that way I guess we are still good law abiding citizens who are enjoying the warmth of a nice wood fire while our 'getaway car' is safely parked in the driveway in full view (minus the handicap placard of course!).

Clutziness and RA

Do any of you with RA deal with a newfound level of clutziness? I have always been quite the clutz but wow, have things gone south in that direction quickly!

I grab something out of the fridge and watch helplessly as it slips through my hands and onto the tile floor. Should I consider carpeting my kitchen floor? Well, maybe not, but I must remember to get a better grip on things, that's for sure. Now to remember that thought when I need it...maybe short term memory loss is hitting me too! Yikes, I don't even want to go there right now!

Yesterday I was going to pour some grape juice into a glass. All of a sudden the half gallon container fell to the floor. Of course the lid was already off and the lovely purple liquid spilled everywhere including under the fridge! So what are you going to do? Laugh or cry? This is always my first thought when these things happen. I'm trying to choose laughing but there have been occasions I'm tempted to burst into tears as I realize my hands just can't do what they use to. When the RA is active in my hands I have nicknamed them "flippers". You can still do stuff but you might have to get more creative on how to do things with flippers instead of fingers! Thankfully, usually I don't have flipper hands!!

Lessons learned: 1) Try to slow down and be sure I have a firm grasp on things before picking them up 2) From now on my shopping trips for kitchen ware will be in the aisle featuring plastic options! And a word to the wise, don't let me hold your baby!

The $800 mistake!

In the blog about medications I mentioned that the directions for using Humira was overkill. Well folks, there has been an event to humble me on that score. A couple of weeks ago when I was preparing to do the Humira injection, I felt so confident. There was nothing to this at all. So the directions were set aside and I pressed on with the task at hand. Yup, easy as pie...got it covered...could do this in my sleep - you get the drift.

So as I lay down on the couch to do the injection procedure, I took off the two caps confidently and pressed the WRONG END ONTO MY FLESH, and as this was the release button for the medication and not the end with the needle, I watched as the Humira shot up into the air about 4 feet in a fine stream of fluid. You know how it is when your mind doesn't quite grasp what your eyes are seeing and you think, WOW what is that stuff going up into the air? And then BAM you realize what the stuff is that is shooting up into the air and not into your body and you say to yourself, 'its your medication, goofball'! Thankfully my thumb never made it onto the other end, the one I had assumed was the release button but was actually the shot end, or my thumb would be trying to absorb all that medicine and with my luck I'd be swollen up like a tick!

A little side note here: on the box of Humira it says the cost is $3200 for four shots without insurance. Can you even believe that! With insurance it is thankfully $30 a month! So when I told my daughter what had happened, she said - "you just made an 800 dollar mistake!" In my case it was a $7.50 mistake but still! Then she said, "That would be a great title for your next blog!"

So here it is, a mistake that will hopefully never be repeated. In fact since that little incident,  those detailed instructions will be reviewed before moving ahead with the dosage!

Earlier I said it was easy as pie...make that humble pie.  A taste I've grown familiar with!