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...