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.

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!

Sunday, October 7, 2012

ODP12 Interruptus

Whenever I start an awesome project, I expect some interference. I went into the October Dress Project this year thinking I would be too tired to do laundry, that I would be sick with this whole spleen/mono thing and wouldn't be able to keep up the way I wanted to, or that I just wouldn't get out of bed and get dressed. But I wanted to do it for several reasons.

  • 1) I had SO MUCH FUN last year doing the project!
  • 2) Especially this year, I knew that not thinking about what to wear would be a bonus, even if I just threw on the same sweater every day. 
  • 3) I was hoping to show people, through my daily blog posts, what it is like to live with a chronic illness that causes me to to visit WAY too many doctors during a week than anybody ever should.
  • 4) I wanted to again remind my children that WE. HAVE. TOO. MUCH. STUFF!

Day 1 went off without a hitch! Day 2 began what I will refer to as "The Beginning of The End". Last week, I had a little one home with a fever and a stomach ache. We went to the doctor, and he was diagnosed with "a virus".
(As an aside, I am NEVER one to complain about wasting a copay to find out that my child ONLY has a Virus. I have had too many times where I find out that a child has a fever and then receives a scary diagnosis. Even Katie ended up having a "virus" that turned out to be a ruptured appendix. So I never mind paying for peace of mind.)

As we got settled in at home with some natural soda, popsicles, a movie and heating pad for my blasted spleen, I got a phone call. My Dad was having so much pain that the Home Healthcare Nurse was suggesting that he go to the ER to find out what was going on. He couldn't stand up, and they couldn't change his dressing.

Because I had fever boy at home, and was already feeling worn out, sick and nearing the end of an infusion cycle, we decided that I would stay home until they figured something out. He had just been there a few days ago, so we weren't expecting anything. 4 hours later, I received a call and my dad was on the other end. He said, "Do you know what it means to have a M A S S?" (this he spelled out). I tried to hold it together and we discussed that we would wait to hear from the doctor when he read the report in the morning. They were admitting him until that time, but the ER doctor was certain that something was going on with his spine.

Cliff note version: My dad has cancer. It gives me chills to type this. Because it was in his bones and 2 of his vertebrae were crumbling, they know it's stage IV. A CT on Wednesday showed that he has lesions in every organ in his body. Based on a mass that the doctor found, he is pretty certain it started in his lungs. My Dad is 70 years old, and no treatment will cure him. So we have decided together that we are going to keep him as comfortable as possible, bring the kids in to visit, and spend as much time with him during the time he has left.

Did I mention that Wednesday was my Anniversary? And I had an inflammation in my foot that had me hobbling to my doctor that same day and then going to the hospital for an ultrasound to rule out a blood clot? Thankfully, it was negative, but I did get to pop in to see Dad both before and after my procedure.

I almost threw in the "dress" on Thursday. But then I thought that I would have to think about what to wear, as well as all the other decisions that I have to make. And I had to be at the Children's Hospital at 7:30am for a gastro appointment with Topher so I didn't want to think about what to wear. I decided that this was a wonderful blessing the Lord has given me this year: One less Decision.

Please keep my family in your prayers. Please pray for my Dad. Please pray for his salvation. I was gone for 24 hours on Saturday to celebrate my Anniversary and he declined. (another aside: His doctor ROCKS!! I wasn't sure if we should go, and he was adamant that Dad wanted me to get away, and he wanted me to have time alone with my husband before we had some serious decisions to make. He also said, "You have a horrible disease, and if you were my patient, I would want you to be rested up before your next infusion and before you start this next phase. So get some rest, and some time with your husband." Another blessing in the midst of this trial.) I am worn out. 

So here are my pictures for Days 2-7.

Day 2: Dress, Gray Target sweater (4 years old), new silk scarf (gift from my friend/hairdresser Monique), OLD black Dansko sandals. (Took Topher to pediatrician, got my hair cut)

Day 3: Dress, purple pashmina gift from my Mom last year, favorite silver opal earrings, 
purple Alegria sandals, Lily Kate who kept jumping on me. Went to my doctor, had ultrasound of leg to rule out blood clot, visited Dad, felt guilty for leaving Topher with friend most of the day.
Day 4: Dress, super soft brown 3/4 sleeve cardigan, gold CZ earrings (gift when Topher was born), Bronze Alegria sandals. Taken at Children's Hospital gastroenterology department. Spent 3 hours there with Topher in the morning. Then came home and put on jammies and cuddled together. 

Day 5: Dress, purple ruffle scarf (gift from a friend), Zebra ribbon CVID awareness hat (Petal Chic Boutique, selected Zebra ribbon at checkout), purple Alegria Sandals (These are my very most favorite shoes right now!)

Day 6: Dress, Ford Warrior In Pink Race Bandana around waist (hubby got it at the Komen Race for the Cure in the morning), cordovan Dansko Clogs for walking at the Renaissance Festival. Sitting with Carl in the Cabriolet to get a ride back to the front because my leg/foot was terribly swollen. But we had a great time celebrating our Anniversary!

Day 7: Dress, black/white stripe sweater (was my Nanny's, has to be at least 10 years old), black tights, Alegria Paloma patent mary janes. Today we went to visit a nursing home where I almost had a meltdown, then the new Whole Foods in Charlotte on our way home. Katie and I visited Grandpa, and when she went to Youth Group I finally had a chance to REST! 

Monday, October 1, 2012

ODP12 Day 1

This morning I didn't want to get out of bed OR get dressed. I thought that I would be so excited to get started with the project that I would jump out of bed. Not so much. I was up half the night with pains in my leg, deep aches that would not allow me to get comfortable. I was also coughing. I knew that little man would be sleeping in since he was staying home sick, so I would be able to sleep in a bit. 

I had a Chiropractor appointment because I hadn't been in over a week, since before my surgery. So I got up, put on some makeup, and tried to get my photographer to feel well enough to snap a photo. Poor kid, he was really feeling shaky hence the slightly blurry pictures. 

The dress - by itself. Lands' End Cotton Modal Fit & Flare Dress, bought on sale with coupon and free shipping. Machine Wash & Dry (but I will probably hang it to keep it looking good).

Day One: Black/Ivory Pinstripe Flare jacket (TJ Maxx), Alegria shoes (super on sale), favorite CZ drop earrings, glasses, wedding ring and a spot of makeup.

I did come home and put my jammies back on to take a nap. Hoping to feel better tomorrow.... 

Sunday, September 30, 2012

October Dress Project 2012

Last year I was blessed to be involved with some amazing women in a project that changed how I look at both how I dress and how I consume. The October Dress Project was established when the founder was chatting with her grandfather and he made a statement about how girls in his day had one dress for weekdays and one dress for Sunday. She was inspired to try and dress around one dress for the entire month of October. Thus, the Project was born.

Last year, I started out with gusto! I found my dress, assembled my accessories, and embarked on the project with a flair for fashion and to see if I could do it. Strangely, it was not as difficult as it would seem. There were days where I wasn't as "into" getting gussied up as other days, but I enjoyed dressing around my purple dress. I did decide that a wrap dress, while quite flattering to me and easy to care for, is NOT necessarily an easy dress to pull off if you want to, say, grocery shop or carry items on a breezy day. 
See that hand in my pocket? It's holding my dress from flying away!!

So I chose a dress that is a bit less high maintenance this year. My dress still has a wrap-style top, however the's closed. For safety and modesty's sake! My life has changed so much in the past year that there are many days where I don't even GET dressed, so I wanted something that will not irritate my skin if my skin "hurts", I needed a dress were I would be able to access my port because I will have TWO infusions this month, and I needed something that would be a bring color that would make me look awesome because most days I just don't feel good right now. I am dealing with a post-sinus surgery infection, a possible secondary infection, and my spleen continues to bother me daily. However, thankfully THIS little bandage is gone...I was quite worried how my nose would look in my pictures this month. Yes, I am that vain person.

So today, I am lying in bed, trying to muster up energy to get out of bed tomorrow to start the project. Most days this month, I have doctor appointments. Good times. My anniversary is Wednesday, but we'll be celebrating this weekend, not sure how, but The Dress will be coming along. 

Tomorrow I shall unveil The Dress. Until then, here is an album of last year's photographs. Unfortunately, the link to the Fort Mill Times article and the clip from when I was on Charlotte Today are no longer on the web, but I hope my 2012 October Dress will allow me to touch as many people as my 2011 dress did. And I also have company, since one of my besties and Next Door Neighbor Laurie will be joining me. Follow both of us on Twitter to see our daily outfits!

Friday, September 14, 2012

Lucy, You've Got Some 'Spleening To Do!

I apologize for being "off the grid". About 24 hours after that cute picture in the previous post was taken, I came down with Aseptic Meningitis, a very rare but not unknown of reaction to my first infusion. Apparently my body did not like either the brand of IVIG or the rate at which it was infused, so I started with the worst headache I've ever felt, neck aches, and fever. My doctor had me to immediately to the ER and after the most terrible ER experience, including a doctor who was very condescending to me about my condition, another physician who was unable to do my lumbar puncture causing me to have to be sent to radiology where after 15 punctures they announced that "there was blood in the fluid" (ya' think!?!?) and they couldn't see anything, and then another nurse trying to sit me up after my spinal tap when I had to lie flat for 4 hours. 

I was admitted for 4 nights, had some very uncaring nurses, and a bed that started moving in the middle of the night and turned the TV off and on and changed channels while the bed was going up and down. NOT fun when you are trying to lie flat and you are nauseated. The nurses said that I must be dreaming or rolled over onto the control (it was nowhere near where I was sleeping), and it happened three times before Carl saw it while he was there and finally got me a new bed. I was never so happy to go home, especially since they didn't want to give me a shower because it was "too difficult" to do with the port. 

Anyway, I RECOVERED and have had several more infusions since then. Each time the side effects are less and I am infusing over 6 hours, hydrating and pre-medicating with steroids and some other medications. I have also found a wonderful online support group where I get some wonderful information. I was feeling so good that I was able to attend MOPS Convention in August. I will blog about that amazing experience before the end of the month. 

With my BFF, Neighbor and MOPS Field Leader Laurie

I started feeling pain in my side a few weeks ago, and I have actually been very tired, like I can't get out bed in the morning and have to take a nap tired. I attributed it to recovering from Convention, then to just the craziness of life after school started. This past weekend the pain got so bad, and I decided it wasn't muscular or back spasms, and I asked my Naturopath if he knew what it was while I was there. He palpated and felt around, pushing and making me yip like a poodle. He explained to me that what he was feeling was my spleen, not a muscle. God made our bodies with the spleen all tucked up under the rib cage, safe and sound from any harm. However, for unknown reasons, mine has swollen and expanded out beyond the safety of the ribs, and is hanging out, exposed and vulnerable. 

The spleen one of those organs that is not very necessary in a healthy person. However, in someone who is immunosuppressed, it has does some extra duty work sometimes. I had blood work done, and my labs were pretty normal. My urine had blood and some other proteins that did not make my doctor happy. I am spending a lot of time resting and doing nothing waiting on the Epstein-Barr Virus titers to see if I have active mono, because of the exhaustion that I am feeling, and I will see my immunologist on Monday. I will be getting my infusion as scheduled on Tuesday. 

As of right now I am still scheduled for surgery on Friday to repair my deviated septum in my nose, and "clean out the turbinates". I really am praying that this does not hinder my surgical status because I have gone off my meds to prepare for surgery and I am so miserable with a continuous sinus infection. 

Stay tuned as I will update as I have more information. And please pray for me once again. 

Proverbs 18:10 (NKJV)
The name of the Lord is a strong tower; 
the righteous run to it and are safe. 


Wednesday, June 20, 2012

Infusion: Day One

So far, so good. Mild headache, pre-meds helped to avoid migraine. Have a nasty taste in my mouth and as the day goes on I am getting more and more tired and a little achy. But everything seems to be going well! I know this is because of the prayers of many! Thank you all!

Working on the MOPS Convention Field Leader Volunteer Spreadsheet!

Saturday, June 16, 2012

A Bill I Can Pay

Usually when I get a medical bill, it goes something like this: 

I don't open it for at least 2-3 days. Maybe more. Maybe it even becomes overdue. When I open it, I cry. Then I calm down, and if it is within one of our networks, I call and add it to the ever increasing amount on our AccessOne card, which is a medical credit card of sorts where we make monthly payments. Then I cry and immediately feel guilty because I have caused our family to go into MORE debt, even though it's Medical Debt, but still. If it's NOT within that network, I calm down, and call the provider and try to set up some kind of payment plan that they don't want to do, then I start crying and begin to tell them my story, and end up with a payment that is usually at least $20 more than I want to pay but at least we won't be handed over to collections. 

Today, I finally opened the Radiology bill from the hospital because it's Saturday and I can't do anything about it anyway. It included all of the Radiology stuff from both hospital stays in May. 2x Chest x-rays, 2x CT Abdomen and Pelvis WITH contrast (they probably charge more for that nasty stuff and I KNOW they charged extra for the glow in the dark Gatorade they made me drink in the ER, but they were both the same even though I provided my OWN Sprite for the second one!!), and 2x Ultrasound of Abdomen. 

Here is a picture of what I saw: 

People, can you see this??? Our family's out of pocket for all these procedures, after insurance and writing off a ton of stuff because we have met my out of pocket for the year, is $5.51. Five dollars and fifty one cents. I whipped out my check book and wrote that check with a smile on my face, and it's ready to go. Praise the Lord for amazing insurance. We are still paying off the other thousands of dollars from last year and earlier this year, but this was the most amazing doctor bill I have ever opened and I wanted to share with my praying friends!

Where have you seen Jesus smile on you lately when you were least expecting it? 

Friday, June 15, 2012

Port Placement - Success

On Tuesday morning bright and early we trekked to CMC Main, or what Carl is now calling our second home. The car actually drove itself I think. We were blessed to have Topher going to VBS with Laurie and her kids, and Katie spent the day with the Kellers (Thanks Terri and kids!!). It is so much easier to relax when I know my children are well cared for and happy. 

When we arrived, like always, everyone took such good care of me. I was escorted to my little room, got changed, had my blood work done, and then the moment of truth: IV time. Now, I had asked my nurse if Carl could be in the room, and he said that he preferred to place the IV then bring family, so I started praying that he would get it on the first stick. I haven't had an IV on the first stick since Katie's birth, and I knew my veins were still tired from my hospital stay, but I was really hopeful. I just started praying, and my nurse Jason explained everything he was doing, including using a smaller than usual needle and placing the IV in my "elbow pit" (the inside part of your elbow, a horrible place to have an IV, but an easier stick especially for short procedures when not using a pump). 

Here's the miracle: I didn't feel anything at all. He made it on the first stick. My vein didn't blow. When he was done, he backed up, threw his hands in the air, and said, "Thank you, Jesus!" I immediately said the same, and told him that there were about 50 women praying for him that morning that he would get that IV on the first stick! He was amazed and said that when he looked at my arms he didn't see it happening but with my history he didn't want to have to keep sticking me. 

He sent for Carl, and we had a wonderful talk about MOPS and what I do for MOPS and how his wife was involved several years back when their children were little. I felt like I had an angel in the room with me, and everything from that point on was almost enjoyable, as pre-op questioning goes. 

The procedure went very well. Apparently after they gave me the Xanax I was a bit obsessed with telling them to place the port inside of where my tan line was so that my bra wouldn't hit the port. The surgeon was laughing when he came back to check on me in post-op and said that the whole way through the procedure I kept asking if it was clearly inside my tan line and telling him that I have sensory issues and didn't want my bra to touch the port. Oh, boy. He said they laughed every time I said it, and thankfully, everything is fine and  the port clears any straps I might want to wear. 

The pain was a bit more than I expected. However I also have a severe ear infection on that same side and the drainage is coming down the same side of my neck as the port so it all came together, Also, I had a bit of a reaction to the adhesive, so once I took the bandage off, I did feel much better. I am still taking it easy 3 days afterwards, but I did take the kids to the pool wearing a t-shirt to keep everything covered today. There is also some not so pretty bruising, but that will clear up I'm sure. I am quite anemic, so I bruise very easily.

Thanks for your continued prayers. Obviously I am still coming down with infections, so I am looking forward to starting my infusions next week. 

Monday, June 11, 2012

Nesting and Cuddling

Tomorrow morning, bright and early, I will wake my children, snuggle them a bit, and then drop them off and different friends' houses before my sweet man takes me to CMC Main to have my port procedure. On days before I have surgery, we get all cuddly around here, and we nest. This morning I woke up when Carl got up to go work out, and couldn't stop coughing. When I couldn't fall asleep, I read a little, watched some TV, and waited until it was time to wake Topher to send him off to VBS with one of my best friends. I got him up about 10 minutes early so he could come cuddle in bed with me. We snuggled and talked about all the crazy things going on this week, and he was off to get dressed.

5 minutes later Katie woke up and crawled into bed with me. She curled up in the nice warm spot he left, and we did the same thing. They both wanted to know the specifics of everything. Where were they going each day, what was I having done again, who is bringing dinner (Kids wanna' eat. Like every day!), what could they do to help get ready today? 

After we started the day by burning popcorn and simultaneously melting the thingie that you put on top of the food in the microwave so it doesn't splatter (I thought I turned the BACK burner on to melt the butter, NOT the FRONT burner!!), then cleaning it all up, we got moving.

We did 6 loads of laundry. Katie and I went to the chiropractor and returned a few things to the craft store, then picked up my prescriptions so I wouldn't have to send anyone out later this week to get them. Then we came home and she went to a friend and Topher came home and cuddled some more.

I love that I am able to assure them that I will be ok. They asked questions, and I answered them as best I could. I am getting a Bard Power Port, a purple port that will go into a vein in my neck and sit in my chest. Yes, it's PURPLE!! Too bad you won't see it. 
"The Bard"

Please keep me and my family in your prayers tomorrow. I am nervous, but I have a peace about this. I know that Katie is anxious, and Carl is my rock, but he will be at the hospital with me and it's never easy when your spouse is in surgery. I'm just thankful that Topher is so busy this week. 

Friday, June 8, 2012

New Jewelry

When you have a port in your chest, you need to make sure that people know about it. Not like I need to announce it wherever I go (unless you hug me too hard, then I might yip like a poodle), but ICE. In Case of Emergency. 

I have had a MedicAlert bracelet for almost 15 years. Because of medication I am on, my random medication allergies, and the fact that I am blind in my right eye and sometimes it does it's own thing. When we got married Carl got me a very pretty 14K gold ID bracelet, and we attached part of his Figaro Chain to it to make it pretty. I have worn that on my arm every day of my life, except for when they make me remove it for medical procedures. It goes right on after that. 

Well, with the port, I need a new one that says that I have a Power Port. I have also developed some new medicine allergies, as well as my fun new Immune Deficiency that needs to be on there. The 14K wasn't in the budget, but I did end up with this two tone stainless steel number: 
What I like about it is that it has enough gold tone that I can take it and have my gold Figaro Chain added back onto it with the lobster clasp. 

If you ever need a medical ID bracelet, I HIGHLY recommend MedicAlert. They keep track of all your medical issues, medications, surgeries, and there is a 24-7 number that is on the bracelet that a medical provider or EMT can call to get your whole history in case of emergency. Can't wait to get my new jewelry!

Thursday, June 7, 2012

Why #MyHusbandRocks

Yesterday was a major milestone in my husband's career. He celebrated 18 years with the same company, Maersk Line. In today's world, when some people change jobs so often due to relocation, being laid off, or just because they want to do something different, we have been blessed as a family with a steady job for our entire married life.

I remember the day Carl Irish interviewed at Maersk. He sat with my Team Leader, directly across from me. Our Manager introduced him to our little area as the guy who worked at his grocery store. The truth was that Carl was about to graduate from Rutgers with a Bachelors Degree and was working the night shift as the Front End Manager. He has always been a very industrious worker, and a great provider.

We became great friends, and at one point our desks were behind each other so we were back to back and could chat all day. We hung out at Happy Hours, were friends with the same crowds, and our first date was to a mutual friend's birthday party. A few months later my grandfather pulled him into the family photo at a family wedding, so he knew he was stuck with me. Several months later he asked me to spend the rest of his life with me, and I said YES YES YES!!

October 3, 1998, One of the Happiest Days of my Life

We were living in New Jersey, and as soon as we got back from our honeymoon Carl put his name on the transfer list for Charleston. The first time his name came up we turned it down after much prayer because his father was sick and we knew we needed to be available to his mom. What a blessing because during his father's last days we were able to be there and Carl's manager allowed him as much time as he needed to grieve and help his mom get things settled. 

A few months after that, we found out that his office would be closing. I was still in the Corporate Office, so my job was safe, but he was offered a management position. In Charleston! Our dream! We jumped on it and our new life began, and we celebrated our first anniversary in the Holy City. I began a part-time job helping with training and then working on a project in another department, and we found out that Katie was on the way. Our wonderful company threw us a baby shower that filled her closets and our nursery with everything we needed, and took care of us when I was on bed rest and had surgery a few days before she was born. Carl's department even came out in force and moved us into our new house when I wasn't allowed out of bed for more than 30 minutes a day!

The best daddy in the entire world December 2000!!

When Topher came along, Carl's managers allowed him to again make it to every OB appointment. He was there when we first saw our little rice baby at 7 weeks, and again when we got to see  his whole little self at 20 weeks. What a blessing to have my husband who had a job where he could put his family as a priority!

Our family is complete September 2002!!

Because of Maersk, our Daddy has been there for every first day of school, every program, every graduation, every major doctor's appointment, every surgery, every ER visit in the middle of the afternoon! 

When we found out, when Carl was out of town on business, that the Charleston office would be closing, I was home alone and he called to tell me before I saw it on the news. He had to interview for a new position and we were so blessed with a new job, a full relocation and a house buy-out when we moved to the Charlotte office. Maersk has taken care of our family in so many ways. Even our insurance rocks, and you know how much we need that!

The Irishes move into a green house in Fort Mill July 2008

Babe, thank you for taking care of our family. Thank you for always putting us first. And CONGRATULATIONS for celebrating 18 years with a wonderful company. Love you!!

Monday, June 4, 2012

A Different Kind of Port

Before I became a Mama, I was a young 20-something fresh out of college with a degree in hand and the owner of a brand new student loan. Being bi-lingual, I was approached by several companies while in college, and was even courted by AT&T to move to Peru for a position. I just couldn't leave my family yet, so I stayed here, and after a few months of jobs that paid the bills, I started my REAL job at Maersk Line in New Jersey. I spent my days talking about things like tariffs, commodities, and PORTS. I did that for a little over 7 years, during which time I met my sweet man at work, got married, and moved from New Jersey to Charleston.

Carl still works at Maersk, so we throw the term "Port" around a lot. We even lived in a "Port Town" before we moved inland. The word "Port" has taken on a whole new meaning in the past few days. After much prayer, and a very scary dream that included 6 different nurses with needles trying to find a viable vein on my arms, I spoke with my patient advocate today and it was decided that having a Port implanted before we start the infusions would be the most humane thing to do. 

I am so thankful that the doctor was on board with this, but she did see my arms last week when they still looked like pincushions. So next Tuesday morning (June 12th) bright and early at 7am Carl will be taking me to CMC Main to have my Medical Port implanted in my chest. It is a minor surgery, but I will be out of commission for at least 2 days as I heal, and I will actually be going back on Wednesday for my first infusion, Lord willing. It will take about 10 days for the site to completely heal, and I will need to take care of that area for a long time. 

But again, I have a peace about this. I have had a few friends tell me of their experiences, or their family member's experiences, and I know that this is the way I want to go. Now I just want Tuesday to come so that I can stop thinking about it! 

Saturday, June 2, 2012

MeatLove Dinner

I like to cook. A lot. One of the things that has upset me most about being sick is that I have not been able to cook healthy, delicious meals for my family every evening. We have been blessed by so many during my illness, and tonight was an unexpected surprise. One of Carl's co-workers informed him yesterday that she would be bringing us a meal. 

Tonight we feasted on a yummy meatloaf, roasted new potatoes, lemon asparagus, garden salad and ice cream for dessert. She even made a big mamma-jamma meatloaf which will allow hubby to have his beloved cold meatloaf and mayo sandwiches for lunch this week!

I was able to sit at the pool for a bit this evening and chat with some friends, was surprised by some special friends from Charleston who were in town and stopped by the pool to give me hugs and make me cry (Thanks Jennifer and Eddie!!!), and came home to a hot delicious meal followed by a nap. Thank you Lord for watching over our family. (Did I mention she brought along paper plates and plastic dinnerware so there was no cleanup? Thanks, Kalie!!)

Friday, June 1, 2012

Let's Start At the Beginning, A Very Good Place to Start

It all began in November 2011. Well, it actually began well before that, but this chapter began in November. I flew to Pennsylvania to help move my Dad into an Assisted Living home, and spend some time with my Nanny and Grandma. On my way home, I came down with a cold. It ended up moving into my chest. The following week, my dear, sweet Nanny passed away, and our family drove back to Pennsylvania. During that trip. everything moved into my chest, and I ended up going to Urgent Care while there because I was coughing so much I couldn't catch my breath. The doctor treated me for asthma, put me on steroids, and told me to follow up when I got home.

The following week, I had a chest x-ray and found out that I had pneumonia, the second week in December. It took me several weeks to get over it, and I ended up with a secondary infection in the middle. I took antibiotics and steroids. In January I came down with Bell's Palsy, and started another round of steroids. That same day, I went to the doctor and started planning some procedures to find out what was causing me to go to the ER with horrible stomach pains every few months. I had an upper endoscopy a week later, and my throat was so sore after that procedure and I started coughing again. A week after that, I had another test that showed that my gall bladder wasn't working, so we scheduled surgery for the second week in February.

Three days after my surgery in February, I came down with pneumonia again. After one round of antibiotics and steroids (4th time in 3 months), we saw no improvement, so we did a stronger antibiotic, inhalers, and narcotic cough medication. I felt like I wasn't getting better, so I did some research and made an appointment with an allergist/pulmonologist/immunologist. She took one look, said I STILL had pneumonia, a sinus infection, and put me on STEROIDS, even stronger antibiotics, and steroid inhalers. When I went back 3 weeks later, I still had the sinus infection, so we did a second round of the antibiotics.

During this time I cracked a rib, did not sleep through the night for 8 weeks, and was still trying to recover from my gall bladder surgery. In addition to this, I felt that something was just off. I don't remember much of March and April, I was so sick I didn't leave the house much. In April, my Immunologist also did some blood work to see why I kept coming down with these sinus infections and pneumonia. I also started my final round of antibiotics to clear up that infection. 

The week before Mother's Day I finished the medication, but I also felt awful. I couldn't stay awake, I felt groggy, and I just felt off. That Saturday I started having some stomach pain, but Topher had strep throat and we both always get tummy pains with strep, so I figured he had shared. I was going to wait until we got home from Charleston, but Sunday the pain got worse, so I called my doctor and she called in a Z-pack for me. On Monday, the stomach pain was so bad I went to bed early, but didn't sleep all night. Tuesday I told Carl I needed to go to the ER.

After x-rays, CT scans, ultrasounds and lots of bloodwork, it was determined that I was suffering from liver toxicity from the Biaxin that I had been taking for my sinuses. I spent a week in the hospital while my body worked to detox as well as recover from CDiff, another infection that had attacked my intestines. I went home on Friday. On Saturday, Carl was camping with Topher, and I started having another pain on my right side. It had started before I was discharged, but it wasn't bad. A friend took me to the hospital, and after x-ray and ultrasound, I was admitted. This time, I had a strep infection in my bladder. We also did a repeat CT scan and an upper endoscopy, and found some terrible inflammation in my stomach.

I had another week's stay, and came home on Thursday, May 24. On Friday I went to a previously scheduled appointment with a new Endocrinologist. After taking 3 pages of notes and not being able to find my thyroid, he did an ultrasound and looked at my blood work, and diagnosed me with Hashimoto's Thyroiditis, an autoimmune disease where the body attacks the thyroid and starts shutting it down. I had felt for months that something was wrong with my thyroid and this was an answer to prayer. I also thought it was  fitting that I was diagnosed on National Thyroid Day!

I processed over the weekend, and on Wednesday I had my follow-up with Dr. Swartz, my Immunologist. I had forgotten about the blood work she had done, so when she came in and brought a social worker with her, I didn't know what to think at first. She began by telling me that there were some things going on in my body that were not normal. Then she told me that I don't have AIDS, lymphoma, leukemia, cancer... I kind of shut down and started crying and tried to ask what I DO have. She began to explain HYPOGAMMAGLOBULINEMIA to me. Basically, it is an immune deficiency where the body's immune system can not make enough antibodies. She explained it that my body is attacking my bone marrow and shutting it down. Another name for what I have is  common variable immunodeficiency, or CVID.

What this means is that I have no immunity. The minimum low number is 795. My numbers were between 200-300. For the next few weeks I will be under "house arrest" until I start treatments. My treatments will be Infusions of IgG immunoglobulin, which is a product of donated blood. I will start treatments every 3 weeks, then after 6 months we will check my levels in my bone marrow and see if we need to continue every 3 weeks or if I can go to every 4 weeks. This will continue for the rest of my life. 

My life has changed. The lives of my family have changed. But the Lord knew this. He gave me a fight to find out what was wrong. When one doctor couldn't find it, He gave me leads on finding doctors who COULD find it. I have had excellent care, caring nurses, AMAZING friends who have cared for my family, and MOPS sisters near and far who have showered me with prayer and gift cards. The Lord has blessed me with this illness so that I can share my journey with others. 

This has been a long post. This is the beginning of my new life, my new journey. I love how David writes my thoughts in this Psalm that my dear friend Judith sent me when I shared my diagnosis: 

Psalm 121

A song of ascents.

I lift up my eyes to the mountains—
    where does my help come from?
My help comes from the Lord,
    the Maker of heaven and earth.
He will not let your foot slip—
    he who watches over you will not slumber;
indeed, he who watches over Israel
    will neither slumber nor sleep.
The Lord watches over you—
    the Lord is your shade at your right hand;
the sun will not harm you by day,
    nor the moon by night.
The Lord will keep you from all harm —
    he will watch over your life;
the Lord will watch over your coming and going
    both now and forevermore.