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!


Heather said...

Hello Jenni!
Best of luck with the IVIG treatment. I underwent the same treatment several years ago. What exactly are the doctors hoping the treatment will do for you?
I sure do hope you continue to see improvements!
You are in my prayers.
love, Heather

Heather said...

Hello again.
I just got your comment on my blog. I tried the IVIG to see if it would help with fatigue. I didn't have any luck with the treatment. In fact, it set me back quite a bit and I had to recover from having it done. (So sorry to leave such a "down" response!) I will most certainly be praying for you and this treatment and I hope you continue to see positive results from it!

Amanda said...

Good luck!!!!

Post is going up tonight!