Wednesday, August 28, 2013

I'm home!

I've been home for about an hour and I'm still feeling fine! I'm a little tired but That's nothing out of the ordinary. I'm gonna go lay on the couch for a bit while Nola's napping and see if I can catch some ZZZs. Thanks for all your support and prayers! Let's pray this medication is the answer to getting my life back.

I'm all done!

Just waiting for my saline to finish and then sit here for another 30 min to be observed for a reaction and I'll be on my way! I was seated in a room with a nice German lady named Barbara who talked to me most of the time and helped me from getting too nervous. She said she'll be praying for me tonight that this is the miracle drug for me, how sweet! I am feeling just fine and didn't have any side effects during the infusion either, so I'm hopeful this will keep up and I'll be feeling fine tonight, tomorrow, and on and on. Yay, I'm so hopeful for a good outcome, keep praying!

Benlysta #1

Well I'm here! All checked in and just waiting for the medication to get mixed at the pharmacy and sent over to the infusion clinic, which apparently can take up to 90 min. Then the infusion itself should take 60 min but thats at the 'suggested' rate of 250cc/hr. I asked if I could start at 75cc/hr and up it 25cc every 15 min if vitals are good. This is what was recommended to minimize side effects from the people on benlysta buddies on Facebook where the main admin is an RN who has taken benlysta since its first clinical trial 8 years ago. The nurse here said they have to follow the manufacturers guidelines. However I'm beginning to like my nurse more and more because she not only called the pharmacy to check but also my rhuematolagist. He agreed to start out at a half dose of 125 for 15 min and then increase to the full dose to at least make sure I tolerate the medication ok before doing it full strength. So yay for a small victory!

Monday, August 26, 2013

T-2 days...

...Until I get my first Benlysta infusion.  So far I've raised $650 on my fundly page and learned that if I receive checks from people who would rather do that than make a payment over the internet I can go in and manually add it onto my page so that it is reflected in the running total.  I started researching what to expect during and after the first infusion and how to prepare for it.  I got a lot of interesting information, some helpful, some that sounded awful too.  I joined a group on facebook called 'Benlysta Buddies' which has a wealth of good tips and tricks in case you get hit with some side effects from the infusions.  I also posted on there asking if anyone had good experiences with their first infusions (or any thereafter) and if they'd share them with me.  There were a lot of people who spoke up saying that they had no ill-effects from the infusions at all.  Some that said they were fine except for being tired afterward.  And then a few who said they had some side effects, but that they only lasted a few days and then for the weeks in-between treatments they felt so much better that it was definitely worth it for them.  I also asked how long it took for them to notice a benefit to taking Benlysta.  Some said it helped right away, some said it took a few weeks to notice any difference, and a lot said that they saw minimal improvement for a while but then after a few months they saw a notable change in their lupus symptoms. 

I called my rheumatologist about getting prescriptions for anti-nausea meds and something in case the infusion triggers a migraine (which I'm prone to anyway).  I just wanted to be prepared in the event that I had these side effects so I don't have to go calling drs and waiting for calls back etc if I'm already not feeling well.  He called back while I was at the gym so he left a message saying that none of his patients have ever complained of nausea or headaches while receiving Benlysta and so he doesn't expect me to feel any side effects from it either, but if I do I should call him and he can address it then.  Not exactly the answer I was looking for, but it does *kind of* make me feel better that all his patients have had good experiences with the drug.  I'm praying I'll fall into that category as well!  Please pray that this all goes as well as it can and that I'm not a ball of nerves going in to get the infusion because that will just make it all worse.  I'm looking at it as 90 minutes of uninterrupted reading time, woohoo!  :) 

Monday, August 19, 2013

Benlysta = Approved!

 I got approval from my insurance for the first 8 Benlysta infusions, woohoo!  Please pray this works to improve my quality of life, I'm so hopeful that maybe with this I can feel 'normal' once again!   I did take the leap and start a fundly group to try and raise $ to help cover my copay costs, so if you're able to help out, Great!  If not, then prayers would still be greatly appreciated!

Sunday, August 11, 2013

Tony Turns 28 and Benlysta

Tony's 28th birthday was kind of a bust.  He took the day off work on Friday and I got up with the girls.  Embry was fine to begin with and then she laid on the couch while I made breakfast and eventually started saying her tummy hurt.  After she had a few bites of food and refused the rest I crushed up half of a left over anti-nausea pill I had and mixed it with sugar and water and gave it to her with a medicine dropper.  Immediately upon swallowing it, she started throwing up.  :/  So we cancelled our plans to go on a date to see 'Wolverine' and by 10 she was acting like her normal self again.  We ended up getting 'The Hobbit' from redbox and I bought kettle corn from the kettle corn food truck and we stayed home.  On Saturday morning I had the MOPS leadership retreat which was from 8-2 and my friend Niki came over with Gabe and took the girls swimming in the pool while Tony and I went out to see 'Wolverine'.  It was pretty good and it was nice to go on a date when we hadn't been on one since my mom broke her shoulder.  I feel bad though because I didn't even get to make Tony a rum cake, which is the one thing he really wants on his birthday because honestly we don't have enough money to buy the supplies for it.

Tony was told about a week ago that IBM is sending his department on a week long furlough with 1/3 the pay either at the end of august or beginning of September.  After paying to fix our termite infestation last month and having to pay for our car registration renewals this month, our savings is running dry and I'm not entirely sure how we're gonna work it out with only 1/3 salary for a week.  I'm sure we'll figure something out as God always provides, but that doesn't mean it's any less stressful in the meantime.

While we're on the topic of money let me say that I got a bit of bad news.  Here's the deal:  I've been trying to convince my rheumatologist to let me try Benlysta since it came out last year.  I've been on lupus forums on facebook where many people say how much it has helped them (mostly with quality of life like more energy and less joint pain etc).  So when I was in there last time I asked him about it once again and he said that he's sure it would help me and he'd put in a request for it.  Also that he was almost 100% sure that my insurance would deny it since it's $35,000/year just for the medication (which wouldn't include the whole administration process).  I got a call from the rheum office saying that the prior authorization through my insurance is still pending, but that my copay for each infusion would be $125.  Each infusion takes about an hour and is administered at a hospital (in my case, TMC) and the first 3 infusions are every 2 weeks and then each infusion after that is every 4 weeks.  Strange, but I really don't have an extra $1750 a year to spare.  And all this is even if the insurance approves it, which is unlikely.  If it gets denied then the rheumatologist will appeal to the drug manufacturer and he said that it goes through that way sometimes.  Anyhow, I thought if it did get approved then maybe I could start up a fundly page or something of the sort to see if I could round up any donations to help pay my portion of the cost.  Then there's always the possibility that it will give me horrible side effects or I'll be allergic to it or it won't make any difference at all, in which case I'd stop taking it all together and just continue on as I am now. 

Monday, August 5, 2013


Wow, it's been over a month since I posted!  I've been insanely busy and haven't had a whole lot of down time.  I guess I'm long overdue for an update so here goes! 

Weight loss challenge:  Complete!  I lost a total of 19 lbs and I can really tell a difference!  I did not win the challenge but my best friend Anna did, so if it wasn't me then I'm glad it was her.  Although the payout would have been mighty nice.  ;)  One of the perks of losing 19 lbs is that my lower stomach no longer hangs down over my pelvis, sounds gross, but hey it's just the reality of the situation!  This also means that the waistband of my underwear doesn't roll under my fat roll anymore, so I'm not constantly trying to pull it back up, woohoo!  And finally, I can actually feel (and sometimes see) some muscle definition appearing.  I was very excited to go try on shorts because I through for sure I'd be down a size or 2, but no such luck.  That was very disappointing, but I'll keep plugging along.  I'm still tracking my calorie intake/output with my fitness pal and managed to still lose a few extra pounds after switching to a lower dose of thyroid medication so I'm cautiously hopeful that I can continue to lose lbs.  

And After! (disregard the fact that I'm not smiling, I was caught off-guard by shutter happy tony!)

Pantano MOPS Community Fair:  Complete!  It took place on July 27 and for the 2 weeks leading up to the fair I pretty much lived at church with the kiddos.  We had a great turn out and the rain held out until after the fair, so all in all, it was a great success!  We raised funds to support our childcare program for the year and hopefully some extra to go toward the convention team but income/costs are still being added up so we'll see where we are when all is said and done. 

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MOPS Convention = a LOT of fundraising!  Luckily the fundraiser I headed up (which was 4 buncos throughout the last MOPS year) is over and done with so I don't have to lead anymore fundraisers, but I still need to participate and help with everyone elses fundraisers.  There are 8 of us trying to raise funds to go to convention in Kansas City in October, and at about $750 each, that means we're doing a lot of fundraisers!  It's time consuming, a lot of work, and sometimes hard on my body but I'm really excited to be going to the convention again this year! 

 Mom:  she's healing, yay!  My mom was over watching the girls about 3 weeks ago and slipped after swimming and broke her shoulder in 3 places.  She's been in a lot of pain but my brother and his youngest daughter were out at my parent's house for the past 3 weeks to help out.  She went to the orthopedist a few days ago and he said that it looks like the bone is healing as well as can be expected and that he hopes to have her arm out of the sling in 2 weeks.  I'm sure she'd love to get the sling off, but I'm sure it's still going to be a long and painful process and I wish there was more I could do to help her.  It's kind of hard to help though with 2 little ones because I'm sure if all 3 of us went out there, we'd probably more of a bother than a help.  :/