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.....