30 Years Have Come and Gone

It's hard to believe that this day marks my 30th year on Earth.  I've had so many amazingly wonderful memories over the years and I'm hoping for many more to come.   I hate to harp on my near death experience once again, but having an event like that happen really does change you, or at least it did for me.  Now when I do something, I want to have the fullest experience possible and I want to leave a lasting impression of someone who truly enjoys life.  Whether or not I'm accomplishing this, I don't know, but I truly hope I'm making this world a better place to be. 

 I am so blessed to have traveled the road I have in this life.  Even though there were some hard times, I have been refined and come out on the other side with a thankful heart.  I am surrounded by people who love me.  Family and friends who have stuck by my side when the going got rough and have laughed during all the fun too.  I have a truly amazing man for my husband and God has given us two beautiful and wonderful children.  I can't imagine the years to come being any better than the last 30, but I know God has great plans.  ;)

Final Approval

So I received the final approval from the Healthwell foundation today saying that I have a $15,000 grant waiting for me to use on my copays.  It looks like the way it works is for me to pay the cost upfront and then submit it for a reimbursement from Healthwell.   This is amazingly fantastic news and I'm so utterly relieved that I don't have to worry about this issue any more (at least for the next year).  It looks like a reimbursement program where I would pay the upfront copay and then submit a claim form to healthwell to get reimbursed for the cost of the copay.  I'm not entirely sure that's the case but I plan on calling them tomorrow to iron out all the details.  And now it's time for a collective sigh...Aaaaaaaah.  :)

Oh, Praise Jesus!

If you know me at all, you know I'm a 'thinker' and not a 'feeler' which means that me having shed tears over a piece of mail is a big big deal.  Well that just happened! 

I spoke with the person in billing who is working on my case at the hospital today and she said that she is going to contact my insurance and figure out why they are not considering it an outpatient service when an infusion is clearly an outpatient service.  She said she thinks they might just be interpreting the coding incorrectly and she's hoping she can get it straightened out, but she made it clear that all insurance companies run things differently and that she wouldn't be able to say for sure if it would be $125 or $917 until they actually had a payment in their account...which could take who knows how long. 

So then I pick up the mail on my way home from a fundraiser (at Culvers, which was super fun btw) and I open up a letter from the Healthwell foundation.  As I said in my last post, the lady at the rheumatology office thought the foundation paid up to $7200 in copays per patient per 12 month period....which would leave me with about $4k out of pocket if the infusions are in fact $917 each.  Well, the letter from Healthwell is a pre-approval letter which states that my grant amount is $15,000!!!  The grants are also retroactive for 30 days prior to your application, which technically would not cover my first infusion, however this states that my coverage period is from 8/28/13-8/27/14.   Guess what date I had my first infusion???  That's right, 8/28/13!  How incredibly amazing is God?  I mean seriously, he deserves a shout out for this one!!!

Prayers Please

Well to make a long story short, the hospital billing department has billed my infusions in such a way that my copay will not be the $125 that I had been told but instead it is 20% of the medication cost which would be $917 per infusion.  I am currently trying to talk to the billing department to get them to bill it as an outpatient service (which has a flat fee copay through my insurance of $125 per infusion) instead of billing it as a part B medical coverage (which is a 20% rate of about $5k per dose of medication).  The last step I made today was to leave a message for the billing person and I'll call them again tomorrow to bug them, but I'm really praying they can change it to the outpatient service fee instead. 

I did get preapproved to get a grant to help cover copay costs from a non-profit foundation called Healthwell.  However the rheumatology office believes that they cover up to $7200/year for copays and if they are $917 each then in a normal year (without loading doses) that would still leave me with a difference of $4,721 to make up somehow.  Please pray that they will change the billing method and this will be an easy fix!  

Benlysta #3

Well Benlysta dose #3 happened on Wed, Sept 25!  I experienced much of the same joint/bone pain that I did after #2, but it only lasted the night of the infusion and then was pretty much gone the next day.  This led to a tough night trying to sleep on Wed however I survived and the girls survived having a rather cranky mama on Thursday.  Not that they weren't doing their fair share to make me tired/frustrated/enraged, but let's just say we know it's been a rough day when the moment Tony walks in from work I say 'bye' and escape on a 'fun' jaunt to the grocery store for some alone time.

Anyhow, the infusion went well except for not getting the meds from the pharmacy for 3 hours.  Normally it'd be about 90 min to get the meds mixed but this particular time there was a stubborn chunk that wouldn't dissolve and since they can't shake it, they just had to wait and watch it.  I was fine because they a) have cable, b) I brought a good book ['Shift' by Hugh Howey], and c) I was ALONE.  Oh sweet relief!  

Great news!  I surpassed my goal on fundly https://fundly.com/leatrice-s-benlysta-infusion-fund with the Premier Jewelry party being a huge success thanks to all my amazing friends and family who supported me (and got some awesome jewelry out of the deal)!  Now we're up to $2414, woot woot! 

Benlysta #2

Everything went swimmingly with my second infusion! They did have to stick me 3 times to get the IV started, which didn't feel very good, but once it was placed everything was fine. If benlysta seems to help then I will seriously think about getting a port placed to avoid all these difficult IVs and blood draws. At first I thought a port was like the pic line I had when I was in the hospital, but it's nothing close to that...except for the fact that it serves the same general purpose. It would be like a little button they insert under my skin into a vein/artery (not sure which) and then when I need to have an IV or blood draw they just poke into the port under my skin and they're in. Seems easy enough and probably a lot less hassle in the long run. Anyhow a funny thing happened today! I posted a link to my fundly page on this Rita ranch and vail community board on Facebook a few weeks ago and one of the people who commented on it said she was an infusion nurse at one of the infusion centers in Tucson. Well today after the first nurse couldn't get the IV placed she called in another nurse and that one goes, 'hey I think I commented on your post on the Rita ranch and Vail board on facebook about Benlysta!'. I was like, 'no way, that's crazy!'. So then we got to talking and it turns out she used to be in a small group with the coordinator of my mops group and that we both went through the foster care class at Arizona baptist children's services (not at the same time) and that her case worker was my Mops mentor mom Julie's daughter. That's so crazy right? What a small world! Anyhow it was great getting to chat with her and I'm hoping to see her in the infusion center again sometime. My mom watched the girls today while I had my treatment, first time babysitting since her accident and it seems that all went well. Even though I asked her not to clean the house, of course she couldn't resist! I really do appreciate the help, but I don't want her to over exert herself. Her physical therapy really seems to be helping her gain back range of motion and strength in her arm which I'm so happy to see. I know it's hard for a parent to see their child in pain but it's also hard for a child to watch their parent suffer. So I'm glad she's recovering well! Anyhow, my appointment today went from 8:30-12 so that's an improvement over last time. Yay! I felt pretty good afterward, a little tired and my mom let me take a nap after I returned some phone calls. I actually was wanting to go to the gym tonight but then opted for taking a bath and reading instead. I think I probably would have been ok working out but I don't want to take the risk this early in my treatments. I'll go to Zumba tomorrow morning and resume my workout routine then.

Round 2 Tomorrow

My second dose of Benlysta is tomorrow morning at 8:30!  Which really means I should already be in bed, but I wanted to get one blog entry in before tomorrow.  I'm not nearly as nervous as I was for my first infusion, so I'm already ahead of the game.  For the first few days after the last infusion I was feeling better than normal, not a lot better, but a little better is good.  Then I had some different symptoms for a few days, which could have been from the Benlysta, or not, who really knows?  I had a lot of leg pain one day although I did ride 12 miles on the stationary bike at the gym that day.  Then I also have had quite a few headaches the past week, but only one bad one, the rest are just annoying.  I slept really well at night for a few nights after the dose, but that's lessened and I'm back to tossing and turning and my shoulder is hurting again.  I guess we'll see how it goes after tomorrow's dose.  A lot of people on the Benlysta forum have said that their 6 month mark is really a milestone in improving their quality of life.  I'm hoping it doesn't take that long, but I'm in this for the long haul!  Keep praying that this will help me.  :)

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!

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!  :) 

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! 

http://fundly.com/leatrice-s-benlysta-infusion-fund

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. 

Happenings!

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.  

Before

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.  :/ 

Admission

When I was in college I was really sick with lupus symptoms and side effects of the lupus medications.  I was constantly worried that I'd get sick in public and have to suffer the embarrassment of that, so I started having panic attacks.  Eventually I told my doctor who put me on an anti-anxiety medication.  I took that for 7 years.  Then I decided to switch to a different medication that was supposed to do the same thing but also helps fibromyalgia patients with pain and I figured I could kill 2 birds with 1 stone.  Well it was fine, except one of the side effects was extreme sweating and they weren't kidding!  I went through last summer on that medication and dang, I was constantly dripping with sweat (plus it didn't help my pain).  So I told my dr and she was going to put me back on the old med, but then I thought, well it's been so long since I've been worried about getting sick in public that I might as well see what happens when I don't take anything.  That was about 6 months ago.  Let me tell you, I found out what happens...I'm a mean person.  I am frustrated, annoyed, impatient, hostile, and just plain mean.  I'm no fun to be around and it sucks.  Although, then I think, well if this is me without the meds, then isn't this really what I'm like?  Deep down I'm truly a mean, no-fun, and generally upset person.  That is really horrible and I don't like it, but should I take a medication that changes who I really am?  I don't know.  It's not what I used to be like before I started the anti-anxiety meds, but it is definitely apparent since I stopped them.  In the end, I'm back on the first medication and I'm supposed to go see the counselor to prescribe something better suited to my nasty temperament.  Bummer.

Weight loss update:  down 15 lbs total, woo!  But the biggest bummer of all is that I'm fairly certain that none of it has to do with me and all the hard hard hard work I've been doing.  I found out that my thyroid meds are too high which would have meant that I was hypERthyroid recently (aka lose weight) instead of hyPOthyroid (aka become a fatty).  What does this make me?  Meaner, sadder, in more despair, and completely unmotivated.  I wish I would have never told my dr that I wanted my thyroid levels checked again and I could go on in a world of ignorance and bliss at becoming the semi-thin person I once was.  I only told her because my hip had been hurting more than normal, but really, what is a little hip pain to a thin person?  I'd much rather be thin and have some extra hip pain than fat without hip pain...ARGH! 

Weight Loss Challenge

Well, we're in week 6 of my 12 week weight loss challenge.  I have so far lost 8lbs which brings me down to 182.  This makes me happy, however, I just watched a video of myself in a swimsuit playing with the kids in the lake when we were camping this weekend and holy cow, that could drive someone to drink.  I guess I don't think I look too bad until times when I see myself like that and then it's just so incredibly depressing.  It's almost as if 8lbs doesn't matter at all if you started out at 190lbs.

I started tracking my calories with the myfitnesspal app.  I'm leatricefay if  anyone wants to be 'friends' on there.  I've successfully stayed under 1200 calories/day for 4 days but we had camping inbetween and believe me, I did not count calories while I was camping!  Compared to what a person normally eats in a day, staying under 1200 calories is cutting your food intake at least in half, probably more.  Needless to say, it's pretty boring.  I'm constantly telling myself that I eat to live, I don't live to eat and therefore can exist on the 'bare minimum' just fine. 

I'm pretty confident that I will not win this challenge as I'm only at 4.5% of body weight lost and we're almost halfway through, but I'll keep plugging away and hopefully someday I won't look like the Michelin Man when I wear a swimming suit.   

Here are a few pics from camping: