How the diagnosis of an autoimmune immune deficiency disease filled me with more Grace
than I ever imagined and how I am now living in that Grace each day.

Thursday, March 14, 2013

Falling Apart

This morning I was in a DEAD sleep when a not so little boy came bouncing on my bed saying, "Mama, it's PI day!!" Why do they think that I want to be awakened to the shock of yelling, or jumping, or fighting every morning? It's not that I wasn't a little excited myself for Pi day...I had plans to surprise the family with sausage, potato and corn pie for dinner. That's what happened this morning. 

Right now I am dealing with severe pain in my feet and ankles, and pain and some swelling in my hands. We found a medication that alleviates some of the pain, but by morning it has always worn off and I just hurt. I need to wake slowly, stretch slowly, and take inventory of how I am feeling before I try to move in the morning. I get morning stiffness and if I do it wrong, I get pain that lasts all day.

So today was a rough day. But I dropped the dogs off at the groomer and made it through Trader Joe's before coming home to put my feet up until the kids got home. Then we picked the dogs up and came home so I could start dinner. 

On my way home from grocery shopping, I was praying and listening to the radio. Josh Wilson's song Fall Apart came on, and I started singing along. Then the words hit me, and I ugly cried for the next 5 miles until I got home. Which wasn't so easy since not only was I crying, but it's allergy season and I HAD NO TISSUES IN THE CAR!! And I think I scared the guy in the dump truck who was beside me at the light, but I really don't care, because I needed to hear these words: 

Why in the world did I think I could 
Only get to know You when my life was good
When everything just falls in place 
The easiest thing is to give You praise 

Now it all seems upside down 

'Cause my whole world is caving in 
But I feel You now more than I did then 
How can I come to the end of me 
And somehow still have all I need
God, I want to now You more 
Maybe this is how it starts 
I find You when I fall apart 

Blessed are the ones who understand 
We got nothing to bring but empty hands
Nothing to hide and nothing to prove
Our heartbreak brings us back to You 

And it all seems upside down 


I don't know how long this will last 
I'm praying for the pain to pass 
But maybe this is the best thing 
That has ever happened to me 


Wednesday, March 13, 2013

Steal My Show

In January we took the kids to Winter Jam. Actually, it was beyond my expectation because we thought we were going to have to show up early, wait in line all day, and then hope and pray that I didn't get sick as we piled into the sold out venue. At the last minute, we found out my bff's husband had tickets to his company's box, and as it turned out, their family and our family were the only ones. We stayed healthy, danced around, ate WAY too much pretzels and popcorn, and worshiped our Lord and I didn't get sick! The kids had a great time, and I left there feeling so full of the Spirit since I haven't been in church in many weeks. 
 Oh my goodness, can you see how much fun they are having?
Check out my Hot Hubby!

 Matthew West

 TobyMac. I think he's wearing Topher's hat!

There were a lot of sick people on the train on the way home. This is how I travel on public transportation. 

TobyMac performed their new song "Steal My Show." It is just now starting to play on the radio, although it's been on my heart often since Winter Jam. Katie got the CD for her birthday and I've been listening to it off and on. Yesterday, I was leaving a particularly difficult doctor appointment. The Lord has used songs many times over the years to speak to me, and when I have gotten bad news, or when I am dealing with trying circumstances, He never lets me down in speaking to me. So I pulled out of the garage parking garage in tears, and these words came on the radio: 

If You wanna steal my show
I'l sit back and watch You go
If You got somethin' to say
Go on and take it away
Need You to steal my show
Can't wait to watch You go, oh, oh
So take it away....
~Steal My Show (TobyMac)

Let it sink it. It basically says....IT'S NOT ABOUT ME! It's God's show, and I want whatever I do to be a reflection of HIM in ME! 

Yesterday, I found out that the crazy symptoms that I have been feeling over the past few months and the extreme pain I am in right now is not in my head. (off topic...actually, my HEAD is doing better lately, mostly due to a change in preventative medication....) I was given the results of over $3000 worth of blood work, about 11 vials of blood taken from my body. And what my blood said is that I have severe Sjogren's Syndrome and am in the midst of a Lupus flare. While I have known about the Sjogren's, I did not know that it was affecting organs other than my eyes and mouth. And the Lupus diagnosis, while not a total shock since the hospital doctors had mentioned it, still has me a bit numb.

Because I have several severe AUTO-immune diseases as well as a Primary Immune Deficiency, treatment will vary compared to someone with just auto-immune illnesses. We decided to hold off on treatment until I have been evaluated at the Mayo Clinic next month. More on that later.

But, my main goal is to let God steal my show. This isn't about me. This is about how I can use these illnesses to be Jesus to others. There are days when I just want to slink into my doctor's office and not speak to anyone, slink back out and wallow. But I decided that I will be intentional in not allowing this or any of my other diagnoses to define me. Which is good, because which one would I pick? If nothing else, I have a great idea for my next tattoo...a zebra ribbon inter-twined with a purple ribbon as the body of a butterfly. Because that's who I am. I am a Lupus/CVID/Fibromyalgia/Sjogren's SURVIVOR!

A dear friend share this with me this morning before my doctor appointment, along with a beautiful prayer. I was scared and nervous, and after reading her words and this passage, my blood pressure was lower than it has been in weeks. 

Do you not know?
Have you not heard?
The Lord is the everlasting God,
the Creator of the ends of the earth.
He will not grow tired or weary,
and his understanding no one can fathom.
He gives strength to the weary
and increases the power of the weak.
Even youths grow tired and weary,
and young men stumble and fall;
but those who hope in the Lord
will renew their strength.
They will soar on wings like eagles;
they will run and not grow weary,
they will walk and not be faint.

(Isaiah 40:28-31)

Tuesday, March 12, 2013

Long Lost Blogger...

Dear faithful readers, 

Sorry it's been so long since I last posted. I think I was suffering from severe grief, depression and illnesses that kept washing over me like waves. It has taken me several months to get over saying goodbye to Dad. I was kind of out of it this weekend and I realized that it had been a year since the weekend that we moved him down here. I thought things would be different now. I have times when I miss him dreadfully, like on my way to infusions early in the morning when we used to talk on the phone. And there are times in the grocery store when I see something that he enjoyed and I get this feeling in my stomach. 

We were able to get away for a few days at Thanksgiving and see Carl's sister and family at his Mom's house. The kids had fun playing with their little cousins, and we all had a good time staying up late and catching up after 5 years! Of course, when we got home, the dogs were so excited to see us! Lily was running around and all of a sudden she was hop-scotching on 3 legs. After a trip to the vet the next day, we found out that the poor thing had torn her ACL. Yep. Add another surgery to the Irish family this year! Doesn't she look cute in her little sunflower cone of shame when she was reunited with her brother Charlie? 
In December after having strep 8 times last year Topher had his tonsils out. On the day before Katie's birthday. He had a very tough recovery but he is feeling much better since. However this weekend he came down with asthma related bronchitis and has missed days 20 and 21 of school. Oy!

Last year we didn't really go all out with decorating because we traveled to PA and then I was so sick. So this year we really tried to get into the Christmas Spirit. 

January found me with a resistant sinus infection so we added a second antibiotic. Unfortunately, my body did NOT like it, and I broke my New Year's Resolution of avoiding the hospital on January 10th with my first ER trip of the year. I was having tendon issues caused by a rare reaction to the antibiotic Avelox. We treated that with steroids and pain medication, and 9 days later I had more pain, this time in my chest. My doctor thought it was a possible infection in my port, so she sent me to be evaluated. BUSIEST night in the ER in over a year. Awesome. After about 16 hours, I was finally admitted with pericarditis, or fluid around my heart. They also diagnosed secondary costochondritis, inflammation in the connective tissue in my rib cage. I can't even tell you how much pain I was in. Thankfully, I was able to go home in 48 hours after they made sure that I didn't have any abnormal heart rhythms. 

The Friday before the Super Bowl I woke up and was unable to put any weight on my foot. After about 2 hours the pain subsided but didn't go away. Saturday it was worse, but again let up after a few hours. By Sunday, the pain was constant, and I could not even walk to the bathroom by myself. Guess where we ended up. If you say the ER, you get extra points. Even though I hadn't taken the Avelox in a month, it was still attacking my tendons and had gotten to my achilles tendon on my right foot. I was given some hefty steroids, pain medication, a cute little shoe, and instructions to follow up with my doctor. We did get good service and since there was that blackout we actually only missed one play of the entire game since it happened while we were driving home!

The next day I got in with the orthopedic doctor, who said that little shoe doo-hickey wasn't going to cut it, so I got "booted" and ended up with a rolling knee walker. Which I don't have a picture of, but since the tendons in my hand and  elbow were affected I couldn't use regular crutches. And thankfully after about 2 weeks the pain let up and I was able to walk on it more. 
Quick aside: They brought me a "knee boot" which came about to my hip. I looked at the nurse and informed her that I didn't have enough real estate for the size of that boot. She blank stared at me. I asked if I was supposed to be able to bend my knee, and she said, "Yes, of course." I asked her to put the hip-wader of a boot next to my leg. So I finally ended up with what they call an "ankle boot" which came to about 1.5" below my knee. I haz short legs, y'all!

So there is a short update of the past few months. I have been dealing with severe fatigue, the kind where getting out of bed is exhausting. Carl is holding down the fort, which is what he does now. He is still running, and I was so proud of him when he completed the Susan G. Komen Race for the Cure and then the Turkey Trot on Thanksgiving Day. 

Stay tuned...more to come.....

Friday, November 16, 2012

A Personalized Country Song

This week has me feeling like I'm living a Country Song. You know, where the dog gets fleas, the kid gets sick, the other kid comes home from school with crazy news, you get know, the great songs that Country Music is known for.

Let's start our story last Thursday. I dropped the fleabags adorable but sorely neglected dogs off at the groomer early in the morning. The past month has been miserable for me. I have been dealing with grief, and inability to wake up and get out of bed most mornings, and blowing through my IVIG at record speeds. So when the groomer told me the dogs had fleas, and I hadn't even noticed, I felt like the WORST doggie mommy and immediately freaked out and panicked. Because when you are dealing with grief, you blow things out of proportion.

Anyway, the fleabags poodle and maltipoo were safely being deflea-ed and I was frantically vacuuming every square inch of my disastrously cluttered home. Stripping beds, washing every throw rug, blanket, pilow, and dog bed in scalding hot water and tumbling dry. My amazing friends Caren and Laurie showed up before I even got home and started the process for me. I got this sweet smelling all natural flea busting powder, sprinkled, let it sit, and vacuumed it up. It made the house smell really yummy, all essential oil-like.

Picked up the dogs, brought them home, let them go potty, brought them inside...THEY HAD FLEAS!! Not many, a few, but enough that I made a quick call to the exterminator and scheduled service for Saturday when I had help with cleaning. After all that, it turns out that the fleas were most likely in the yard, because once we had the yard treated, no more fleas. I finally slept through the night. With these cute de-flead cuties curled up with me. 

On Monday Topher came home from school crying. He fell on the floor and said he couldn't get up. He said he had pain. I asked where. He said, "Down there." Of course, being the sane mother that I am, I FREAKED OUT. I called the pediatrician, he sent us to the Emergency Department. 

Now, this ER at Levine's Children's Hospital is top notch. When we got there Topher could barely walk, but he saw the little kid masks and as I was filling out paper they called him back to do vitals. He asked if they had any grown up masks because, "My Mama has an immune problem and I don't want her to get sick again." Say it with me....AWWWW!! I love that kid! They did, and that little sentence got us fast tracked to the other side of the building where there were NO SICK KIDS, we were the only patients, and we got our own PA and Nurse. They sat down and talked to Topher on his own level, and explained everything to him. We had to go for an ultrasound, and they waited 10 minutes until Daddy got there. Thankfully they did give him some Motrin first so he was a bit more comfortable by that time. 
Thank the Lord the ultrasound ruled out what his doctor had originally thought and he was diagnosed with Epididymitis. Yes, we had to ask him to say and spell it several times, and even then weren't sure what it was. Click the link...I don't want those words to be searchable on my blog for obvious reasons! So we were home with ice packs, antibiotics, Motrin and bed rest for the rest of the week. Of course, MY CHILD started running fevers so we were back to the doctor today for more tests which are pending. 

Meanwhile yesterday Katie comes home yesterday telling me that she's developed an allergy to her shampoo or conditioner because her scalp was itchy. Paranoid Mama raised her feelers and immediately pulled out the fine tooth comb and the magnifying glass. Yep.....all plans for the evening were cancelled as I put my exhaustion aside and stood on shaking legs for almost 5 hours to nit pick through my child's incredibly thick hair removing every trace of those nasty vermin. At times I did have to stop because my hands were cramping or my arms or back were spasming, but when Katie went to the nurse this morning, she saw NOT ONE SIGN that Katie had ever had even one single nit in her flowing locks. She suggested I could have a career of it. I suggested she was CRAZY and I never want to see another louse again as long as I live. See, I'm not talking THIN hair took ALL. NIGHT. LONG!!

So several days this week I had heard "swooshing" sounds in my right ear, and last night I started feeling very dizzy as I was working on the hair. I could touch my jaw and would get a sharp shooting pain through my ear. So off I went to my immunologist this morning. As it turns out I have a severe sinus infection (thought it was allergies....), and a double ear infection with a collapsed ear drum on one side and a bulging ear drum on the other side. So antibiotics for me along with an antibiotic / numbing ear drop. 

So that was our last 8 days. I am going to bed and praying that the Plagues are over and we can begin to get ready for the Holidays with some health creeping back into the house. I have an infusion on Monday with a brand new Pre-medication protocol, so we'll be praying that I will have fewer side effects this week. 

And if you were laughing while you read this, that's ok. By this afternoon, I had to laugh, too! In the middle of all this craziness we were blessed with FREE tickets to Kaleidoscope on Ice, an Ice Show sponsored by Levine Cancer Institute and attended by many Cancer Survivors and others who have been touched by Cancer. We drove in with our friends and I was able to laugh and giggle and totally embarrass my girl by dancing to Kool and the Gang and SCREAM for Scott Hamilton and Nancy Kerrigan as they took to the ice. Set your DVR's for Sundy after Thanksgiving at 5pm on CBS for this amazing show. This is just a snippet for what you can look forward to: 
The guy in the purple shirt is Scott Hamilton. He amazes me!!

Monday, October 29, 2012

Dancing with Jesus

On Monday, October 15 at 12:25 pm my Dad, Grandpa to my kids, went home to Jesus, 12 days after being diagnosed with Cancer. We know that he passed right from this life into the arms of Jesus, and his passing was as peaceful as could be. I was holding his hand, Carl was holding me, and my Aunt Noni and cousin Andrea were in the room. 

I had to go to the doctor to get a stitch in my nose removed because it had become infected, and right as I got off the exit in Rock Hill the nurse called to let me know that I should get there as quickly as possible, that his breathing was very labored and that his fever would not come down anymore. She told me that she told him (in her adorable Korean accent), "You hold on for you little girl, she be here with you very very soon!" 

My doctor was amazing and moved the person before me so I could run in and out, and Carl met me there. He was breathing with 3-4 seconds between breaths, and with every breath we were on edge waiting for the next. We talked with him, reminding  him of all the good times, and telling how much Katie and Topher love him. The Hospice nurse got there and just as she put the stethoscope on his chest to listen, he took his final breath, and she looked at me and shook her head. 

I prayed that the Lord would give him a peaceful passing, with no pain, and that he please give me one more sign so I would know he was in heaven. Right at that very moment, the sun came out. It was a very dark, rainy, dreary morning, and all of a sudden, the sun shone into the room. Carl and I spent some time with "him" before we left, but in all my sadness, I knew he was with Jesus. 

It has been two weeks today, and I am still processing. I am numb at times, angry that I didn't get to spend more time with him talking about the Lord, regretful that I had the nose surgery when I did because if I wouldn't have had it when I did, I would have been able to spend more time with him..... But the Lord knew what was going to happen, and I did not. I have boxes in my front office right when you walk into my house that I need to go through, a storage unit room that I need to sort and empty, and financial things to handle and bills to pay. I am over the lay in the bed or lay on the sofa and watch TV stage, but I am still mourning. I think I am also mourning my Nanny and Grandma again, too. I am also mourning my health, since I have had so many health crises since Dad moved here and it seemed I was either sick or taking care of Dad since March, and we didn't get time to have any fun. 

Please continue to keep our family in your prayers. We need it. I need it. 

R. Michael Jackson 
June 22, 1942 - October 15, 2012

Saturday, October 13, 2012

Feeling Jesus in the Pain

We are nearing the end with my Dad. It is so hard to sit at his bedside, watching him labor with each breath. But I am thankful to be here for those rare moments, like earlier this afternoon, when he held my hand and said, plain as day, with his eyes closed, "I love you!" We were all in the room, Katie, my cousin Andrea, my Aunt Noni, and me. On Thursday he was moved to a skilled nursing home and is under Hospice care now. He has become all but unresponsive, and it pains me to see him like this. 

Pastor Johnny Caruso, one of Katie's youth pastors, came and prayed with Dad this morning. The nurse was about to give him his morphine and I asked her to withhold it until we prayed. Johnny talked with him, and he grunted and said Katie's name and Topher's name. I told him Topher was with Daddy, but that Katie was here. She was standing with her arms around me, holding me. She is such a strong girl. I gave her the option of going with Daddy or coming with me, and she wanted to come see Grandpa. Johnny asked if he could pray, and Dad tried to nod his head. So Katie held his hand and I put my hand on his arm, and Johnny explained that he was going to pray and Dad could just think the words in his heart. 

When he was done, Dad tried to smile. Johnny asked if he prayed with him and if he knew for certain that he would be going to Heaven, and he nodded his head slightly and tried to smile. Katie and I were sobbing, and Johnny said to me, "That's a smile! He's at peace. Your daddy's going to heaven." Katie just had tears running down her face, she has been praying for her Grandpa since she knew to pray. I was just crying, because I have been praying for my dad since I was 6. I know he believed in Jesus, and he prayed, but I needed a sign that he knew for certain that he knows where he will be spending eternity, and when Caren and I talked with him last week he still wasn't sure.

It was the prayers of all my faithful friends that softened his heart. I know that the Lord prepared this time just for me and Katie. We told him after he received Jesus that he can go now. We know he's done fighting. I told him that he did a good job with me, and that I am a woman now, and between Carl and God they have this covered (and all my friends, because, let's face it....I honestly need help in so many ways...but I didn't tell him that!), so he doesn't have to hold on for me or Katie or Topher. We don't want him to suffer, we want him to dance on healed legs with Jesus. He used to love to dance, and would dance around with me to music on the record player in the living room of his apartment. He will have a perfect body, and will no longer be in pain.

I am peacefully sitting here with him as he struggles with his breaths and is heavily medicated, because I told him I wouldn't let him be alone. But even if I am not here, I know now that he will not be alone. Because when he takes his final breath here on earth, he will be taking his first breath in Heaven, and he will be welcomed by My Jesus.

Please keep praying for us. Because even though we have our sign, this is still hard. 
Grandpa with Katie & Topher at a picnic in the Spring. One of the last times he really wanted to go outside because it was "too hot in the South" over the Summer.

Wednesday, October 10, 2012

ODP12 Days 8 & 9

It has been one of those weeks. Monday was what I refer to as Hydration Day. It is the day before my IVIG infusion when I drink more fluids, mostly water and Gatorade, than I think is humanly possible. Of course, that also means I pee more than a woman who is 9 months pregnant, but it helps me avoid the worst of the side effects (migraine, nausea, rash, chills & shaking, increased blood pressure) that I tend to suffer from. This is easier said than done, especially if I am running around, taking care of children, and visiting my dad at the hospital. All of which I did on Monday.

Before I left Dad on Friday, he asked me to bring him a Dairy Queen Blizzard with Pecans. I put my dress on, ran to the mall to the DQ, and brought him a Blizzard. When I walked in, I told him that I had his Blizzard. He was happy to see me, but in a panicked voice told me to open the window. I opened the curtains, and he said, "I don't see any snow, be careful driving!" He talked about it snowing for the next 15 minutes, until he asked my why his hand was cold. I told him he was holding his "milkshake" (didn't want to alarm him about snow again!), and he was convinced that the bats were cold and that they shouldn't be playing baseball in the snow. He's very disoriented, but he did tell me he loved me and knew that I was in the room. I did have to laugh, he told me to be careful driving in the snow when I left.

Day 8: Dress; brown cardi (5 years old), brown tights, brown tooled Dansko clogs, jade cardigan from Target. Double chins are for your entertainment only....I was laughing at my photographer.....
My photographer wearing her dress; brown cardigan from Target, tights, brown cowboy boots from Target, beautiful scarf as a belt on loan from her BFF neighbor, and necklace made by women in Africa, gift from MOPS Field Leader Training.

Went to bed saying I wasn't going to wear the dress to infusion, but decided that I really should. Dress + layers actually kept me warm in the 57 degree room, and I knew I wouldn't be wearing it on the 10th, recovery day. 

Day 9: Dress, grey & ivory striped tee from Target, 4 years ago, grey leggings, charcoal cardigan, Infusion zebra slipper boots (gift from the Ah-mazing Tracey Solomon), and IV pole that was going to the potty with me when this shot was taken. I also had my Alegria patent Mary Janes on when I took the slippers off. Dress is actually perfect for accessing my port.

There are three of us who have these boots. Three of us who pray for each other, who are dealing with physical illnesses and other crises, three of us who lean on each other when we feel like we can't do it on our own. At MOPS Convention this year, Tracey found these in the gift shop. She bought them for me, Athena and herself. When we wear them, we look down and know to pray for each other. They are Zebra print for my CVID, they are Cowboy boots, for Athena who lives in Montana, and they have blue designs on them, for Tracey's husband Kyle who is courageously kicking Prostate Cancer's Butt!! 

So today, I did not don the dress. I slept until noon, argued with a Case Worker that she NEEDS to keep me in the loop, fought with my Dad's 401k company, and slept in between with a major headache but no chills or shakes. Tomorrow, I will re-assess and decide if I am going to continue with the project. I have so few days to be with my Dad, and I am not sure if I want to deal with the Red Dress and making it look presentable. 

Oh, and I made several of my friends giggle when I put out an APB for Toilet Paper on Facebook tonight. Mama can't drive, we have a dead battery in the van, and my sweet hubby has been running carpool and Boy Scout errands since he got off work, And Topher is on MIRALAX!! We need Toilet Paper, people!