New today: joint and nerve pain.
I finally got some sleep last night……after I finished reading my new book (that might be the fastest I’ve ever read a book in my life). I was thinking that the recent Neulesta shot was no big deal and I made it through with no side effects…….but then this morning I woke up feeling like I got hit by a truck. It’s mostly joint pain in the thigh, hip and lower back……but the most surprising is the jaw pain. I went to take a bite of a cake donut and the pain radiates from my teeth all the way out to my ears. I’ve never felt anything like it. I took some Tylenol and my mom picked up some Claritin which was recommended to alleviate some of the pain.
But…..a little pain never kept me from eating a donut.
The Nuelesta shot stimulates the growth of “healthy” white blood cells so I imagine the pain is from my white blood cell factory working overtime….so it’s not a bad thing:
I held my morning meeting with Lisa from bed and showed her a new “when I grow up” dress I want them to make today……something super bright and cheery. I want Brett to take me to L.A. next week so I can pick out some new fabrics that I need to round out our Spring line coming at the end of February.
I think the most exhausting thing for me right now is insurance companies and medical bills. When you don’t feel well, the last thing on your mind is opening up an envelope and writing a check. The worst feeling is getting a letter in the mail saying that they decided not to cover something and then you have to go through the appeal process and pray they cover it. And then there are all the phone calls trying to get payment plans set up…..it makes my head hurt. I haven’t even balanced my checkbook in 3 months….how on earth can I figure out a payment plan that makes sense?
Oh, last night all I could feel was my scalp and hair! It feels like little tight ponytails. I told Boo I was thinking about cutting my hair again and she was really upset.
My mother changed her flight to mid-January so she’s staying another week to help out with Boo. I’m so thankful. She’s been such a huge help already. She took Boo to the desert zoo yesterday and Boo is her kindred spirit because my mom likes to read every single plaque of information at each exhibit and Boo loves that. They were both full of new information last night at dinner. If I feel well enough next week we might make the 2 hours drive to the San Diego Zoo. My mom helped Boo write some Christmas thank you notes last night too…..she writes out the present and the names and Boo copies them onto the thank you card:. It was so sweet to see how excited Boo was to write and send mail to everyone:
Lisa and Brett have been moving the office to it’s new location. It’s going to be pretty awesome once we get to paint and decorate….my in-laws gave us a hand-me-down chandelier that will add some “shabby chic.” Right now they are just clearing out the old office so it can become a writing room / playroom. We need a place for the 3 foot Barbie dream house and Boo’s kitchen. With the girls out of school they’ve been making great use of the new space and had their OWN morning meeting…..I imagine one day these two girls will take over:
Insurance issues… bills… It’s all coming back to me now. Had the same issues. Delegate the bills/collection calls as much as you can. You don’t need this kind of stress.
After the second call from my insurance company trying to convince me to stop treatment, and the first bill collecting call, I refused to deal with them because it took my focus away from my baby and from fighting the cancer. I delegated to my husband, but there are actually companies that you can hire to handle this for you.
My husband set up a spreadsheed to track what days I received services and from whom (lab, radiology, neurology, infusion, doctor, hospital, etc.). He had a column for when the service was rendered, when we got the bill, when we submitted to insurance, when the insurance determination came and what the amount was, and when we paid the remainder. He had one of those portable file things and a folder for each provider. This was helpful when we had to dispute bills and payments. The radiology place had crappy bookkeeping, so my husband’s records saved us money. It also helped at tax time.
I used to sing that song when I worked at the YMCA. Now it’s stuck in my head!!! 🙂 Love reading your blog, you are an inspiration. 🙂
Angela Jerman says
I am a golf friend of your sisters and I thoroughly enjoy all of your posts, especially the crafts. I read your most recent post and a statement of yours triggered a suggestion I was once given from a higher up at Blue Cross Blue Shield. She told me that they don’t take appeals serious until around the 3rd round, so keep appealing until they give in, so … keep pushing just like you always do. You make me want to Live for Joy everyday! Thank you.
Love in Christ,
This may or may not apply for you. At a point when the bliss are higher then your income, there are “hardship” forms that can be filled out to document your income and what you have outgoing. Some providers will settle for less, some will write-off a bill entirely. Agree to the lowest possible payment, you can always pay more when/if you can but it’s nice to have that option. Medical bills do not carry interest so this is in your favor. Hope that helps.
(PS-keep making those doughnuts!)
alex m says
We sang that song in elementary school!
Susan Sutherlin says
There should be rule against insurance companies bugging you when you feel like you “got hit by a truck”.
Praying forthe joint pay to go away and lots of donuts in your future.
So sorry about the joint pain. My dad gets 7 days of those shots once a month after 3 days of chemo. He said after the first one he felt like he was having a heart attack. I’m so glad there is something to help the immune system but wish with all of my heart it was easier.
Amy N. says
As someone who grew up in San Diego, I’d have to say if you are making the drive, I’d go to the Safari Park (formerly known as the Wild Animal Park). When I was home from Christmas, I went to both, and I still think that the Safari Park is better. The animals have much more room to roam around and the look a lot healthier and are often wandering around. It is a bit more walking but I would recommend it. Although, I must say, it would somewhat depend on what animals you want to see. They aren’t all at both parks. Anyhoo, just my opinion.
I’m sorry about the whole insurance/med bills thing. It’s such an awful factor to deal into an already hard situation. Been there done that. Hubs and I have had our fair share of med issues & ins./billing battles. I follow along with you, read your posts, pray for you, say my thanks for you. You are so inspiring! I have enjoyed your site for some time now. Love your tutorials, your wickedly naughty humor (at times), your spirit, creativity, I could go on and on and on! I don’t always take the time to comment as I see your list is always full. Just wanted to drop in, send some love and let you know that (for what it’s worth), even if I’m not always commenting, I’m always reading and praying (as I know many others are as well). Good luck with the Claratin! You are a Super Hero!
You are so inspiring, I wish my husband had of had your blogs to read to inspire him as he was going thru this. Love to read you every day. We were so fortunate that our oncologist office was on top of all the insurance dealings even with experimental drugs. Don’t worry about the bills, you can pay them 25.00 a month til you get them paid off and doesn’t effect your credit rating. Just keep on your path and positive attitude. I pray for you, you are such an inspiration! Just try to eat even if you can’t taste it!
Mandy Stonehocker says
I’m choosing the joy, Ashley! Thank you for being such a great inspiration! Love, Faith, Prayers, and Hugs to you and yours!!
Michelle T says
I’m sorry you have to go through the joint pain-it sounds crummy and I hope it subsides soon. Regarding dealing with your medical bills-does your husband’s work maybe have any type of resource to help employees dealing with a crisis that could help? Some companies do, and that may relieve some of the stress. Are you planning on painting your writing room yourself?
The thank you cards you’re having your daughter write are so sweet-I love that!! Hang in there and feel better soon. You and your family are in my prayers.
Nicole Dein says
I’m sorry about the insurace company issues! That’s the last thing you need to worry about! By the way, I think you are instilling a life long lession for Boo by having her write thank you notes! I have my children do the same thing. I think it helps them appreciate the things they have more:) I love the button factory song…I teach Kindergarten and we sing that song by Dr. Jean at least once a week!
I Choose Joy for my New Years resolution!!
Happy New Year!
you continue to inspire me with your strength and spirit. it is beyond unfair that in addition to dealing with cancer you have to deal with insurance companies and financial hardships. if at all possible,lean on someone that can assist you with the insurance companies,etc. every ounce of fight that you have in you should be directed toward the cancer! STAY STRONG!
if boo hasnt seen this yet,you may want to have her watch the arthur episode about cancer.it deals with hair loss and other things when dealing with cancer. the episode is the great macgrady….http://pbskids.org/arthur/video/index.html
Heather Hillier says
Ashley; Sorry to hear about your joint pain. I did not have any pain relating to my Neulasta shot. I was one of the lucky ones but I did hear a number of people in the oncology department mention Claritin but I think they all took it before they actually got their shot. Hopefully, one shot does the trick.
The hip pain may also be from just sitting around and lying down. I still have hip pain related to treatment and stiffnesss in my joints but it beats the alternative. Keep up your positive attitude, it truly makes a world of difference in your treatment. Also wanted to mention the BEST eye brow product to use for when you lose your eyebrows. My daughter is an actress and her best friend is a makeup artist and she recommend the Dual Eyebrow powder by Anastasia at Sephora. To apply it, buy one of their Sephora brand lips brushes (cheap) and use it.
Also, ask your onc about taking COQ10 to help with the joint pain. I take 300 mg per day and it has helped me.
Take good care, Fondly, Heather
If you decide to come down to San Diego, I have zoo passes for you! We get free passes with our zoo membership and since our membership needs to be renewed today, I was going to go next week so I’ll have at least 2 free adult passes, plus discount coupons. I would love to give them to you and your family. I kind of agree with the comment about the Safari Park being better, however, I feel like my kids like the zoo better because the animals are easier to see. Whenever we go to the Safari Park, I spend a lot of time trying to point out the animals to my kids and if they can’t find them, they get frustrated. Let me know where I can send the tickets!!
My dad had a hard time with the neuelesta also. Wish I had heard about the Claritan to give it a try. When his hair fell out it was uncomfortable too but I am so surprised at how quickly it is growing back after his chemo ended. I expected it to be months without hair but he started to grow it back as soon as chemo stopped. It’s only been a few weeks so we don’t know if it’s going to look different than before. I’m hoping for curly! Happy New Year. Wishing you a wonderful 2012. You are an inspiration.
Denise Burridge says
Happy New Year!
Sorry to hear about you feeling discomfort. I hope that the claritin works. Amazing that an allergy med would be the remedy. I missed reading the blog for a couple of days. Your post in ref to no “Oral Sex” after Chemo about made me spit my soda all over the computer. lol In ref to crochet hats. Let me know if there is a particular pattern you would like. I’ve been crocheting now a year and for the most part I actually get the patterns correctly 😉 I would love to make you a hat =) If there isn’t a particular pattern then let me know what your favorite color is. I’m so glad that your Mom was able to stay longer with you and the family. I could see them in my mind when you were describing them playing barbies. I saw the new color for the office! Love it. In ref to insomnia, I can definitely relate. I take meds for that. If not I can be up til crazy times like now. Its 2am. Forgot to get my meds refilled before the holidays. Maybe they can give you something so that you can rest. So happy to hear that your WBC count is up!! Okay Sweetie, I have to try to go to sleep now before I get a second wind. May today be full of lots of love and peace! Sending you lots of positive energy for the WBCs! Big ((hugs))
So sorry about your pain, mama. I hope it subsides soon and the Claritin will work for you. Ugh…insurance companies! We’ve had our share of all of that in the past and it = no fun.
Hugs to you and wishing you a healthy, cancer free (soon) 2012!!
Team Ashley!!! XOXO
Susan Sutherlin says
Thinking of you and keeping positive thoughts 🙂
Debbie B says
Sorry to hear about the bone pain, I hope the Claritin will work.
Just between you and me, did you not take the senior seminar for the math major where you find out that we aren’t supposed to know how to balance a checkbook? I can’t for the life of me balance one. Can do all sorts of stats equations and code with the best but checkbooks? Naaa.
All joking aside, 2012 will be great because, I Choose Joy.
I dont know if anyone posted this yet but with my experience as a oncology nurse the joint pain could be from the neulasta but the jaw pain might be from the vincristine (i think you said that was part of your regimen). make sure you talk to your dr. if it gets unbearable. hang in there 🙂
Lisa Freeman says
You need to take the Claratin D before your shot and for three days after the shot. I found out that starting the day before the shot worked for me.