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? 

SIGN UP FOR RACES WHICH ONE IS UNPREPARED (at the moment) TO RUN! What else?!?!

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

And the troubles they've had

To keep me from thinking of mine

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 moon has a face

And it smiles on the lake

And causes the ripples in Time

I'm lucky to be here

With someone I like

Who maketh my spirit to shine

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

  

May is Lupus Awareness Month

Bringing awareness to the disease

click the link to watch an informative video

May is Lupus Awareness Month. Some of my fellow lupus warriors and I have committed to share openly about just how seriously lupus affects our lives. I’m sharing my story, not for pity, but to raise awareness, which is KEY to finding and funding better treatments and, ultimately, a cure. Lupus is a disease of the immune system which occurs on a cellular level. While a normal functioning immune system works to attack invaders like germs, viruses, bacteria, etc., the immune system of someone with lupus cannot recognize good tissue from bad. My immune system attacks my healthy tissue, and any part of my body is fair game. Lupus is a disease of flares—periods of higher disease activity and severity, along with quieter times of less activity and severity. The goal of treatment is to keep flares to a minimum, hopefully stalling the progression of organ damage. Currently, 1.5 million Americans live with lupus. 16,000 new cases are diagnosed each year. Thousands of Americans die of Lupus each year. Almost 37% of SLE deaths are among people between 15 and 44. 

 Lupus has affected my…

-joints (arthritis, pain and swelling –there are times I must use a cane to be mobile, times I cannot make a fist or hold a pencil due to swelling) 

 -connective tissue (pain, easy injury, poor healing, inflammation, especially costochondritis, a painful inflammation of the jointure of the breastbone and ribs)

-skin (rashes and photosensitivity—too much sun exposure is toxic for me) 

-hair (yes, I’ve lost a good portion of my hair at times)

 -eyes (I have retinal damage/toxic maculopathy with some vision loss, including a small, permanent dark spot in my vision)

 -lungs (I frequently get pleurisy, a painful lung inflammation and recurrent lung infections like bronchitis and pneumonia)

-blood (I have anemia and low blood counts –red and white blood cells, hemoglobin, hematocrit, lymphocytes, etc., and clotting tendencies)

-circulatory system (I have Raynaud’s, a painful circulatory disorder affecting my feet, hands, face and small vessels in my brain, which also causes horrible headaches, and livedo reticularis, a circulatory problem which causes a mottled/spiderweb-like pattern to affected skin, and clotting tendencies)

-autonomic nervous system (which causes tachycardia, low blood pressure, low blood sugar, dizziness and other issues. My pancreas is also affected as I have hyperinsulinemia—I produce WAY too much insulin, the opposite of diabetes— though we are still investigating the connection between this and lupus.)

-brain and central nervous system (lupus headaches, memory loss, unexplained fevers, fatigue, cognitive difficulties such as trouble with speech, word association, blurry vision, vertigo, etc.) In 2012, there was a period of several months when I was unable to drive or go out alone due to CNS issues. I was constantly dizzy and could not remember words, places, faces…sometimes even forgetting how I arrived at locations or how to get home or the location of items I purchase every week in the supermarket. I couldn’t hold regular conversations. This was an especially difficult time.

 -heart (palpitations, irregular rhythms, tachycardia)

 -digestive system (mouth and nose ulcers, dryness of the digestive tract (and other areas like eyes), chronic constipation, nausea, unexplained weight loss and gain.)

 -kidneys (thankfully, my kidney involvement thus far has been mild. I sometimes pass protein in my urine, and have frequent UTI, bladder and kidney infections.) 

How does lupus affect the kidneys?

click the link to read an article from the LFA

 I have tried several medications to control the activity and progression of lupus. These include steroids, anti-inflammatories, anti-malarials, immunosuppressants, biologics and chemotherapy. Currently, I’m taking low dose daily oral steroids, along with higher doses by IV, aspirin, high dose vitamin D, vitamin b-12, metformin (for hyperinsulinemia), plaquenil, CellCept (an organ rejection medication) and Rituxan (biologic chemotherapy) every 4-6 months.

 I believe lifestyle choices make a difference in how I’m feeling as well. I follow a healthy diet, get as much rest as possible, try to pace myself, and when I’m able, I exercise regularly by walking, running, swimming, and light weight lifting. 

 My faith in God is also a key to dealing with this disease. I am humbled by how many folks pray for me. My wonderful husband is also incredibly supportive. I also have a small circle of faithful friends who I greatly appreciate.

Ten things you should know about lupus

click to read the article from "The World According to Lupus"

Part of my efforts to help raise awareness of lupus was...

Running in the Capital City Quarter Marathon on May 3, and raising over $1,000 for the Alliance For Lupus Research! 

Those of us living with lupus need more options. There are several drugs being developed specifically for lupus, and some of them are in the trial stages right now. The mission of the Alliance For Lupus Research is to find better treatments and ultimately prevent and cure Systemic Lupus (SLE). Since its founding, the ALR has given more money to lupus research than any non-governmental agency in the world. Because the ALR Board of Directors pays for all administrative, operating and fundraising costs, 100% of donations go directly to lupus research. You can read more about ALR at www.lupusresearch.org. Your donation to the ALR will help provide funding for research into treating and curing lupus. All donations to the ALR are tax deductible.

 Donating through this FirstGiving website is simple, fast and totally secure. It is also the most efficient way to support my fundraising efforts.

Thanks to those who made donations! I appreciate your support and encouragement!

Before the race

In the corral, before the race

Nearing the finish line

If I collapse, pause my Garmin...

Last mile

Finishing strong

Just after the race

Suck it up Buttercup

Although I was disappointed that I couldn't run the half marathon (13.1 miles, like I did last year), I'm kind of amazed that I was able to complete the quarter (6.55 miles). I was still recovering from a lupus flare, bronchitis and gastroenteritis, and I wasn't able to spend very much time training. God was certainly with me and blessed me to be able to cross the finish line. I ran slowly for some of the race and walked quickly for the rest. 

HOWEVER...

When you live with lupus, things can change quickly...

On May 5, I had my gall bladder removed. A second surgery was performed to clean up and remove a large amount of scar tissue from a previous surgery. I spent two days in the hospital. Then I was home for 3 days before being re-admitted with pneumonia and a UTI/kidney infection. My improperly functioning immune system, along with the immune suppressing medications I take for lupus and the stress to my body from the surgeries made it easy for the infections to take hold and become serious very quickly. I received IV antibiotics, breathing treatments, and more IV steroids than I've ever had before. 

I also had a diagnostic CT scan with iodine contrast (to diagnose the pneumonia). I had a very scary reaction to this test! My entire body became numb and felt like it had electricity pulsating through it. My heart was racing. I had horrible, deep pain in my legs. Due to the stress of the reaction, I hyperventilated (which I've never done before.) Thankfully, my ER nurse, was right on top of what was happening, gave me oxygen, steroids and got me calmed down. The reaction was gone in about 30 minutes.

I have to credit the Lord for two things that happened while I was in the hospital the second time (although I'm sure I've missed MANY other ways God revealed Himself during those days). The day I was to be discharged, my IV infiltrated (not good) during the infusion of IV antibiotics. This was the third time it had infiltrated, one of which caused a painful thrombophlebitis. This time, the medication was collecting under my skin instead of flowing into my vein. It was also leaking and running down my arm. My arm was itching, swelling and HURTING and BURNING. After finally getting the nurse to come and help, an attempt was made to find another vein...which was unsuccessful. Just then, a man stuck his head into the room and asked if there was anything the nurses needed. Enter...Fred (name changed for privacy), the IV angel. Fred works in the ER and has a reputation as the best IV nurse in the facility. What was he doing on the third floor? What prompted him to pop into my room? GOD SENT HIM TO ME! He was gentle and reassuring and completely professional...and he got the IV in a small vein in my hand on the first try! YES! 

On the previous day, another nurse was the RN assigned to my wing. As she was checking me over that morning, we somehow got to talking about running. She shared that she has been on a journey, getting fit and losing 100 pounds! Suddenly she looked rather familiar to me, but I hesitated to pursue that. I said, "Well, if I ever get straightened around, maybe we can run together sometime, but I'm slow." She told me she was slow, too. I said, "The road where I live is a great place to run. It's a long, dead end street, and a loop on the street is about 3 miles. The road is Dark Hollow Road." She paused a minute and said, "You're the people with the long driveway." My skin started to tingle! "You're that girl," I said, "who we've seen running every single day for months. We talk about you! You inspire us! You've come so far! You should be really proud!" DIVINE APPOINTMENT! It was great to meet her. She was so encouraging and kind. And she was a great nurse. I hope we can tear up the pavement (slowly) together soon!

One morning while I was in the hospital, I tried to read the newspaper. I read the obituary of a young woman who died from overwhelming infection due to complications from pneumonia. I gave up on reading the paper after that! I pray the God will be with her family and friends as they grieve their loss.

That's a rash!

My late night companion, Sir Barf Bag

After four days in the local hospital, I was discharged to recover at home. At that point, the hospital was actually a more dangerous place to be than home, due to the risk of infection with c-diff, mrsa or some other resistant bug. I'm slowly recovering my strength. I'm dealing with more severe anemia, low lymphocytes, trouble with blood sugar regulation, lingering cough, nausea and flaring lupus symptoms like fatigue, headache, nose sores, and joint pain. 

Dreaming of running from my hospital bed

I know many, many people have been praying for me. I'm really and truly humbled by that. My loving, self-less, patient husband has been so wonderful, too. Friends have sent cards and called to check on me. I've been able to spend time in prayer while confined to bed. I'm thankful for the presence of the Lord with me. 

I'm still scheduled for two chemo infusions of Rituxan in June, as long as I'm free of pneumonia or other infections. I'm also still awaiting being fitted with my continuous glucose monitor, which will help to monitor my low blood sugar more effectively. My hematologist consulted with the head pharmacist at UPMC and they have found an IV iron preparation which we have not yet tried. I have had allergic reactions, one of which was really serious, to 5 other IV iron preparations, so we had given up hope for finding one I could use to help raise my ferritin levels. I'll be trying this new infusion in late May. Please pray for no allergic reaction! This would help my red blood cell level to rise and hopefully eliminate the need for a blood transfusion. 

As part of Lupus Awareness Month, POP (Put On Purple) for lupus day was held on May 16. Lots of my friends and family wore purple to support those with lupus and spread awareness. Here are some photos from my 2014 POP:

THANK YOU FOR YOUR SUPPORT AND LOVE!

Totally unrelated to lupus, but super cool for me... 

I got to hear one of my favorite musicians, Pierce Pettis, live in concert recently. Ben and I have heard him play live once before. He was fantastic! Afterward, we got to meet him and chat for a few minutes, and Ben snapped this photo: 

Here's a link to one of my favorite Pierce Pettis songs: 

That Kind of Love by Pierce Pettis

Click the link to hear the song

Can't be bought or sold or faked

 That kind of love

 Always gives itself away

 That kind of love

 Wiser than the wisest sage

 It's innocence makes me ashamed

 Til I'm not sure I can take

 That kind of love

 Pride and hatred cannot stand

 That kind of love

 Greater love hath no man

 Than that kind of love

 Won't be kept unto itself

 Spreads it's charm, casts it's spell

 No one's safe this side of hell

 From that kind of love

 Love rejected and ignored

 Held in chains, behind closed doors

 Stuff of legend and of songs

 Deep down everybody longs (for)

 That kind of love . . . oh, that kind of love

 Some people never know

 That kind of love

 Though it only takes a child to show

 That kind of love

 Widows smile and strong men weep

 Little ones play at it's feet

 Deaf can hear and blind can see

 That kind of love

 Love triumphant, love on fire

 Love that humbles and inspires

 No conditions, no restraints

 That kind of love . . . oh, that kind of love

 How could anyone deny

 That kind of love

 Every heart is measured by

 That kind of love

 Even stars fall from the sky

 Everything will fall in time

 Except those things that cannot die

 That kind of love

 Oh, may you be remembered by

 That kind of love

This song is my prayer for all of us...may we be remembered by that kind of love. Thanks for joining me on my journey. I'd be honored to pray for you. Please leave your requests in the comments section below (be mindful of others' privacy in your requests). 

Until next time...