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! 

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.... 

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 bottom....it'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!

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.