Monday, November 23, 2009

16 down, 8 to go

I'm officially 2/3 of the way through my IVIG infusions now! I remember my doctor telling me, probably more than a year ago, that when he asks patients what one thing he has done for them that they would take with them to a desert island, most say the IG. I haven't gotten that result, and actually was about ready to throw in the towel before this last infusion because they seem to be making me feel worse rather than better...

Until yesterday. I know it's very early to really see how this one infusion will make me feel in the long-range, but when Rick picked me up from the hospital last night, for the first time I came home not feel totally and completely wrung out and done in by the infusion process. It had been a long day, about 6 hours and 3 doses of benadryl (pretreatment, then hives, then tight/sore/swelling throat) to get through the infusion, but as the saline started pumping afterwards, I actually started feeling realatively good!

I ate dinner with my family, took more benadryl and headed to bed. Rick said I flipped and flopped a lot and asked me if I had bad dreams because I had pulled the blankets all apart, but I just felt good, hard, more-restful-than-normal hard sleep. I had a really hard time waking up this morning, but have been up and going pretty well since about 9:30. I'm definately needing to crawl back in bed for a nap this afternoon, but am thankful to be functioning this well at all on a Monday!

Most of yesterday's hives have cleared up, though I've still got one patch of pretty nasty, oozy hives right next to my PICC line (we think I've developed an allergy to the skin prep treatment we have been using to keep the bandages from irritating my bandage site), that really burn and hurt. I'm quite stiff today, like the stiffness I've had in my hands since the beginning of the IVs has shifted through my whole body now, and my torso is sore, especially my lower back and abdominal area (feels rather like menstral bloating/cramping, but I had a hysterectomy a year ago, so know it's not that). Naproxen has reduced much of the pain and even a bit of my stiffness already this morning and I'm drinking a lot of fresh water to try to flush out the rest. I feel "puffy" and actually gained about 3 pounds yesterday, but am amazed that even with these things, I feel measurably better this morning than I do many weeks even several days after infusion. I am hopeful that maybe this last third of treatment will let me begin to see why so many other patients have found such benefit from IG!

Random Notes to Share:

- If you have been reading my blog for a while, you know I have a special place in my heart for identical twin girls, Addi and Cassi Hemple. These sweet 5-year-olds right here in Reno fight Niemann Pick Type C disease, a fatal cellular cholesterol disease that is often referred to as the “Childhood Alzheimer’s” and have lost many skills already, including the ability to talk. What makes the girls' case even more unique is that they have been fighting other unidentified health issues since 2005. Their mom, Chris, has maintained for a long time that she believed there to be an underlying issue with their immune systems, not directly related to the Niemann Pick Type C. Amazingly enough, these girls also both tested positive for XMRV and their non-Niemann Pick C symptoms are all consistant with neuro-immune illness. When I began following their story a few years ago, I had no idea that our worlds would end up intersecting on such a personal level!!! Read more about Chris' theory of Cholesterol's roll in XMRV.

- Yesterday, during the infusion, I was watching an interview on Fox and heard about the Manhattan Declaration. This "Historic Declaration on Christian Conscience" has been written by more than 125 Orthodox, Catholic & Evangelical Leaders and has already been signed by more than 50,000 supporters since its release on Friday! I want to take more time to really explore what this document is all about, but as I understand it, the basic premise seems to be a group of Christians who are committing themselves to fight for three basic principles - sanctity of human life, dignity of marriage as the conjugal union of husband and wife, rights of conscience and religious liberty - and coveneting themselves to uphold these areas even if/when our government makes laws to the contrary. I believe the intent is a promising to go as far as civil disobedience in the effort to obey God rather than man, if our government should make it come to that. Very interesting!

- I will be placing a Gurrlie Girl jewelry order Tuesday, Dec. 1. I have yet to make a final decision, but there is a very real possibility that this may be the final order I place as I am considering letting my GG consultantship expire. If you have had your eye on something and been holding off on ordering, you might want to consider Christmas shopping now. Feel free to email me with order questions - jsaake AT yahoo DOT com. :)

- Affordable Mineral Makeup™ has become even more affordable! In response to current economic struggles we all face, the owner of AMM has reduced prices so that all 5g sifter jars are now priced under $7, even our exclusive lines!

- Not sure if I will get a chance to post again later this week, so I close by asking you, "What are you thankful for?" My list is long, ranging from God's grace in salvation to my miracle family to employment for my husband and good insurance and medical care. That's just scratching the surface; I am truly blessed! I would like to hear from you about your blessings, even through the struggles, as well. Please share in the comments field here!

Tuesday, November 17, 2009

Christmas Shopping Bargain!

Then The Body Shop is currently offering holiday Grab Bags that promise to have at least $50, and up to $75, worth of products in each bag. They are selling for $15.

I am a member of eBates, an online shopping rebate program. Right now eBates is offering a 10% rebate for all The Body Shop purchases made through their link.

There is a limit of 2 grab bags per customer. If you spend $50 on their website, standard shipping is free. But then I happened across the coupon code WEL103 that gives FREE shipping on any size order.

I placed my order on my Discover Card that is currently offering a double cash back bonus for online puchases between now and Christmas! So, my total for 2 grab bags (anywhere from $100-$150 worth of stuff I can use for the Christmas gifts) cost me just $32 and some change (I did have to pay sales tax, thus the $2+). I'll get 10% of the $30 purchase price back from eBates, and get cash back rewards from Discover too, so in the end I'll have spent around $25 for the whole thing!

The Grab Bags go fast, so if you are interested you can use the free shipping code of WEL103 and go right to The Body Shop's website. Or you can stack your promotions like I did by joining eBates through my link (we each automatically get $5 into our eBates accounts if you join and make a $20 purchase through their links within 90 days) to take advantage of your 10% rebate too.

As for credit cards, I go to the Discover Card website on a monthly basis and check what special offers they have going. While we always get cash back on our Discover purchases, most of the special extra rewards are not automatic, but can be easily requested on the credit card website through opt-in options. It's well worth the minute it takes me to log in, look around and enter the extra programs that often offer additiona 5% cash back or something similar.

Hope this gives someone a fun Christmas. My eBates referal link is if you need it. :)

Thursday, November 12, 2009

Friday, November 6, 2009

Friday Joy :)

Been a long week with sick kids and a sort-of-fighting-something-sickish Mommy (nothing new there, just an extra layer added to my normal). Daddy's sleeping on the couch to try to stay away from all the contagious germs floating about our home. Had some success with homeschooling, but mostly just had a hybernation week here, with the 3-year-old having had enough of it all and creating ways to get himself in trouble yesterday.

Exactly how many different kinds of messes can one little boy make in any given 20 minutes? The morning started with a large tupperward bowl of raw rice poured through the dirty colandar all over the kitchen floor, then mixed with half-eaten smuggled candy, markers all over the schoolroom door, and the entire toybox turned on end and scattered across the house, all within a 15-20 minute timeframe. The day only went downhill from there...

I'm so glad it's almost the weekend. I'm ready for a fresh start. It's weeks like this that make me thankful for our infertility journey before motherhood, because if we hadn't fought and prayed so hard for these little miracles, these are the kinds of days that could otherwise lead me to forget what a true miracle and blessing it is to have them in our lives!

It's not quite the weekend yet, but today I choose to focus on the fact that This is the day that the LORD has made. I will rejoice and be glad in it!

There are many things I want to blog about, like how fun it is to watch our daughter asking for various things for Christmas when we already know that what she will find under the tree will far surpass any of those items she thinks she wants so badly. (Thanks to our local toy store's phone call earlier this week that we had won a very special prize there, something that would be far outside our typical Christmas gift budget.) She feels sure that these things she's asking for will make her little heart so happy and cannot begin to imagine that there is something far better in store for her. Gives me a glimps of how God must feel as we beg and pleed for the things we think will gratify, and He seems to sit back and "do nothing" when in reality his patient smile hides the quiet joy of all He knows He has planned for us, plans for our good, far beyond all we could ask or imagine.

There are about 600 unanswered emails currently sitting in my inbox, many half-written blog topics floating around in my head, a sale I should be promoting for my mineral makeup business, a new catalog about to launch for Gurrlie Girl jewelry, and so much more "stuff" that calls to distract my heart, but today I'm going to turn off the computer, walk away, take a shower (thanks to my hubby plastic wrapping my PICC line before he left for work), then just enjoy my kids! Fevers are mostly broken, we seem to be off to a better start emotionally and relationally all around, and I have a pile of jello boxes waiting to be built into a model of a Roman arch. Motherhood has it's very hard days, but thanks to infertility, I don't want to miss a single sticky day of this journey!

Since I'm not up to answering emails, a quick shoutout to my friend Jill here: There's absolutely nothing "lazy" about sleeping late, then working late. That's how my body typically works best and my creative juices best flow too! The fact that you can work enough to actually financially support yourself while living with chronic illness is a HUGE blessing, so I'm proud of you for what you can do and say "go with the flow" about how you get it done! {{{hug}}}

Tuesday, November 3, 2009

Chronic Fatigue Syndrome Advisory Committee

Both days of CFSAC meetings from last month, where both Dr. Daniel Peterson and Annette Whittemore testified, are now available for few view in full:

Day one (Thursday, Oct. 29, 2009) can be viewed at (6 hours, 43 minutes playtime)

Day two (Friday, Oct. 30, 2009) is found at (5 hours, 15 minutes)