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 

(Chorus)
'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 

Chorus

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 

Chorus

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)

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.....

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!!

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!

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. 

 

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!

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? 

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. 

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. 

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!

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! 

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.

¹ I lift up my eyes to the mountains—
    where does my help come from?
² My help comes from the Lord,
    the Maker of heaven and earth.

³ He will not let your foot slip—
    he who watches over you will not slumber;
⁴ indeed, he who watches over Israel
    will neither slumber nor sleep.

⁵ The Lord watches over you—
    the Lord is your shade at your right hand;
⁶ the sun will not harm you by day,
    nor the moon by night.

⁷ The Lord will keep you from all harm —
    he will watch over your life;
⁸ the Lord will watch over your coming and going
    both now and forevermore.