A Wild Shieldmaiden of the North: June 2014

What do you call a person who sees things that aren't really there, hears things that aren't really there and smells things that aren't really there?

Jonella ... you call her Jonella.

It's a scary admission. I've been having hallucinations. Visual, auditory and olfactory hallucinations. The brain involvement seems to have increased in severity during the last 45 days or so. I see things that are not there, like scrolling numbers across my field of vision, words flashing in my field of vision. I hear things that are not there, like bells, music, screams, animal sounds, doors slamming. I smell things that are not there, like burning electric wires, animal waste, rotten eggs. (These smelling episodes could actually be a type of seizure.) I've also had trouble with simple computations. For example, when I was trying to pay the bills last month, I had to stop and make myself a chart detailing how many zeros were in 10, 100, 1,000, etc. I forget complete conversations. I show up for appointments only to find that I have no appointment scheduled. I make up other conversations, decisions, purchases that never actually took place. I've had headaches that cannot be relieved, except with high dose steroids. I've also had some times where I seem to "space out" and feel like I'm watching my life from outside myself, if that makes sense--like it's a movie and I'm a spectator.

This is lupus when it affects your brain.

Lupus and brain involvement

Click on the link above for more detailed information about how lupus can affect the brain.

Since being released from the hospital last month (when I had pneumonia following a surgery), lupus has been making its presence KNOWN. I've now lost 25 pounds since the middle of March, without trying. I'm glad for the weight loss, but will soon be at the point where enough is enough. I've had periods of extremely high fevers--103+--along with severe chest pain, night sweats, hair loss, dizziness, diarrhea, pitting edema, nightmares, joint pain, etc.

Lab work confirms increased lupus activity, although for now my kidneys look okay, with only mild involvement.

Of course, it was right in the middle of this lupus flare up that "life" happened... An example: My husband had to be out of town overnight for a family obligation. Naturally, my dog, Jack, chose THAT night to run away and my kitty, Fflewddur, chose THAT night to have numerous asthma attacks which required a breathing treatment! Thankfully my brother-in-law, Tim, hauled Jack out of the neighbors' creek bed and brought him home, covered with creek muck and stinking like you know what! He had a good time, though! And my niece, Sara, came to the rescue, administering the breathing medication while I held Fflewddur still (which, if you know Fflewddur, is a monumental feat in itself!) We all slept really well that night!

We also had a BIG week here in the Hollow in early June. My father-in-law, Ed, turned 95, and all the Williamsons came out of the woodwork! :) We had around 80 people at Dad's farmhouse for a day of eating, visiting, eating, visiting and more eating! It was a wonderful time. All 6 of Dad's children were there, as well as all of his grandchildren and great-grandchildren! Thankfully, my family was very understanding about my limitations right now. I appreciate them so much!

My Father-In-Law, "Big Ed"

I had my first of two infusions of Rituximab on June 16. My next infusion is June 30. This medication works in the bone marrow to reduce the number of B cells (a type of white blood cell) which often malfunction in lupus. The infusions take approximately 8 hours, plus about 3 hours travel time round trip. LONG days.

Ben and I in the waiting room at Magee Women's Hospital in Pittsburgh, at 6:50 a.m., just before being called back for my treatment.

Me, about 30 minutes into my infusion of Rituximab (Rituxan)

The infusions begin with premedications, to help control the reaction I have to Rituxan. I get 50 mg of benadryl and 150 mg of steroids in my IV. I take Tylenol and anti-nausea meds orally. Then, the Rituximab begins flowing...slowly. The flow rate is increased in pre-set increments, starting at 50 ml/hour until a rate of 200 ml/hour is reached. The drug can be infused at a rate of up to 400 ml/hour, but my heart starts doing the diggity dance at anything over 200 ml/hour, so the drip is done slowly. A total of 1,000 mg of Rituximab is infused. Even with the premeds, I still get itchy, my chest gets tight, and my nose gets very stuffy feeling, although it's not really congested. It's just the airways reacting to the medicine.

RITUXAN FOR CNS LUPUS

Click the link for more information about Rituximab

After the infusion, I'm usually pretty sleepy for the rest of that day and the next day. THEN...I really feel unwell for another 4-8 days. I'm weak, very fatigued, my stomach "gets involved," my large bones ache and I'm very pale. It's important to avoid places where there could be lots of germs or sick people while you're getting rituxan infusions, and for about 2-4 weeks following infusions. When I must go out, I wear a surgical mask (with which I frighten many children, unintentionally.) It's better when the children actually ask what's wrong with me. Then I can tell them I'm just trying not to get sick from other people because my body can't fight things like colds and tummy aches very well. I think most people are afraid I have something they could catch, when it's really the other way around. One little girl at church asked me about the mask, and after I explained it, she said, "Oh, it's like my dentist. He wears a mask so my spit doesn't get on him." EXACTLY! From the mouths of babes...

I also have a very short hair cut--a pixie cut. In the 80's I had BIG hair...LONG, BIG hair...like one can of Aqua Net a week LONG, BIG hair! I've had it shorter at different times, but I lost a good portion of it once after getting sick, and decided to try a pixie and have stuck with it ever since. During times when lupus makes me lose some of my hair, it's not as noticeable with this cut. But, when people hear I'm undergoing chemotherapy to fight lupus, many of them assume that I've lost all my hair and now it's growing back in and that's why it's so short. I get compliments like this: "Oh, and your hair is coming in so nicely! It doesn't look bad at all!" I don't contradict them...after all, they are trying to make me feel better, and there might come a time when their words ARE true. So far lupus has only made me lose part of my hair, never all of it at once, thankfully.

I've also received two infusions of Injectafer, an IV iron preparation. And...I'm glad to report that my reaction to it was MILD! Woo-hoo! Nothing like the anaphylactic, cardiac and hivey reactions of the past! Again, I just have to have it dripped much slower than normal, and be premedicated well. Hopefully this will help with my chronic anemia and improve my energy levels soon.

The Alliance For Lupus Research recently celebrated its fifteenth anniversary! Here's a link to a short video which describes the work that they do:

Alliance for Lupus Research is 15 years old!

Speaking of anniversaries...Ben and I celebrated our nineteenth wedding anniversary in early June.

What does one do while one is stuck in bed with a lupus flare/recovering from pneumonia/regaining strength after chemotherapy?

Here's the plan...

June 30 Rituxan infusion

July 15 Begin walking regularly (jogging ASAP)

August 1 Begin strength training

September 29 Run the Ocean City, NJ Half Marathon

October 4 Sole Sisters Five Miler AND Breast Cancer Awareness 5K in Wildwood, NJ

November 9 EQT 10 Miler in Pittsburgh

EQT 10 miler

December 14 Jeff Galloway 13.1 in Atlanta, GA

(Tentatively...I haven't entered this one yet...we'll see how it's going when the day is closer.)

Speaking of Jeff Galloway, I recently entered a "shoefie" contest through his facebook page. What's a shoefie? It's just like a selfie (a photo you take of yourself) only it's a photo you take of your running shoes. We were to supply an answer to the this question: I love my running shoes because ______________, in addition to our photos. Here's my entry:

#Shoefie #Jeffgalloway131 I love my running shoes because purple is the color of lupus awareness and I AM A LUPUS WARRIOR! Battling this disease sometimes makes running difficult or impossible. But each day I can wear these shoes is another day I can stick it to lupus and regain some of the control I've lost over my life. These shoes remind me that every run is a blessing! I LOVE THESE SHOES!

And guess what...I was a runner-up winner! :) There were a lot of entries, so I was excited. And the news that I'd been selected came on a particularly crappy day, so that was a nice blessing!

If you're not familiar with Jeff Galloway and his run/walk method, you should check it out, especially if you're just getting stared with running (or are interested in starting) or you're coming back from illness or injury...which is the story of my running life! Here's a link to his website:

JeffGalloway.com

A former classmate of mine sent me a beautiful encouragement related to running, too:

"Today I ran a 5k today and when doing so saw a post of my FB friend and Former Classmate who loves to run , but today was receiving her Rituxin Infusion with a caption that she is looking to get back to running in July. Well Jonella Williamson I ran my 5k and then I ran another for you!!!!!! You are the bravest warrior, lupus advocate, and sister of the road,,, may you dream of the many miles that stretch ahead of you!!!!' Take care......."

Thank you Dani!

Another friend encouraged me to seek out and claim for myself Bible verses pertaining to God's strength being our strength. When I couldn't attend church on a recent Sunday, I spent time doing just that. It was a refreshing time in God's word! Thanks, Mag!

Here are some of the verses:

"I love you Lord. You are my strength." ~ Psalm 18:1

Psalm 41:3 "The Lord will give them strength when they are sick, and He will make them well again."

Exodus 15:2 "The Lord gives me strength and makes me sing..."

Psalm 118:14 "The Lord gives me strength and a song. He has saved me."

Isaiah 28:29 "He gives strength to those who are tired and more power to those who are weak."

Jeremiah 31:25 "I will give rest and strength to those who are weak and tired."

Habakkuk 3:19 "The Sovereign Lord is my strength! He makes me surefooted as a deer, able to tread upon the heights."

Colossians 1:11 "God will strengthen you with His own great power so that you will not give up when trouble comes, but you will be patient."

Philippians 4:13 "For I can do everything through Christ, who gives me strength."

Ephesians 3:16 "I ask the Father in His great glory to give you the power to be strong inwardly through His Spirit."

Another former classmate sent me several verses on this list. I hadn't heard anything of him since high school, so it was really great to have him chime in!

And, I received this encouragement from another dear friend. It's a cup cozy with a purple ribbon for lupus awareness! It was made by Jennifer at Mogo Made. Here's a link to her facebook page...she takes orders!

Mogo Made Crochet

This was my first Father's Day without my dad, and he was certainly on my mind.

I feel like I've babbled long enough for now! My head hurts from concentrating this long anyway! I'll leave you with a song that my dad and I both love...

"Don't Let Us Get Sick" by Warren Zevon

Click the link to hear the song

Don't let us get sick

Don't let us get old

Don't let us get stupid, all right?

Just make us be brave

And make us play nice

And let us be together tonight

The sky was on fire

When I walked to the mill

To take up the slack in the line

I thought of my friends