Description

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.


Showing posts with label Topher. Show all posts
Showing posts with label Topher. Show all posts

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 sick...you 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 here....it 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!!