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.

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.