If I Could...

Today's  #NHBPM topic suggestion is “If I had more than 24 hours in a day… (Or unlimited spoons or funds)."

So many choices, time, energy or money. Each would be an incredible blessing. Oh, the possibilities!  I think I'm going to daydream a moment here, about funds.

If I had unlimited funds, I would take care of two big bills first. I would love to be able to pay off our house and medical bills (estimated to be between a million and a million and a half for my lifetime).

Next, I would like to replace our cars with hundreds of thousands of miles (and lots of "issues" between the two). My minivan is easier for me to climb in and out of than most other vehicles I have ridden in (because I just back up to the seat and sit, no door jam to climb over), but has more quirks than our car. We bought it, used, nearly 7 years ago, so even though the back window won't close and it leaks oil and/or other fluids regularly (transmission and air conditioning problems too - but we've done all we can there), we are thankful that it is still drivable. It will probably die first.

Rick's car is getting up there in miles too and just started leaking some sort of fluid a bit too. It hasn't had air conditioning in years (not a problem in winter, but nasty in Nevada summers) so I would love to replace this for my husband and no longer have him coming home so sweaty he's sick from heat!  But they both get us around and are paid for. Right now, that's what is important!

About $7,000 would go toward hearing aids if further testing showed any kind could improve my hearing.

And if I'm really dreaming here, I would love to own an RV so that I could travel with my family and not have to worry about special needs in a hotel room.

Another dream-list item would be a recumbent trike like Terra Trike since balancing on a regular bike is no longer in my foreseeable future.

Also I would look at several educational options for our kids, both for now and for college.

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I am thankful that God promises to supply all our needs. Maybe not every earthly wish, but I am thankful that each true need is always supplied by Him. Sometimes I get nervous or antsy and wonder why He isn't giving in my ways and according to my timetable, but He is never late and often very creative in how He answers prayer!

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First Published Book: Hannah's Hope : Seeking God's Heart in the Midst of Infertility, Miscarriage, and Adoption Loss

Book-in-progress on drawing on the fruit of the Spirit in times of trial: Harvesting Hope from Heartache

Next book-in-progress: 6 strokes at age 39, Stroke of Grace

Future manuscript in the plans: Given Me a Thorn, the apostle Paul's story as applicable to living with chronic illness

birthdays and Stanford

Happy birthday to my Baby Bear who, in 5 minutes, will celebrate four years of life outside my womb. Here's the adorable magazine cover Rick designed as his birth announcement.

And since I will not be here to post on Monday, an early Happy Birthday wish to our sweet Princess who is turning 7 almost to the exact minute, 48 hours after her little brother's moment of celebration. :)

We are off to Stanford this weekend. Hopefully I'll have an update to post from our visit with Dr. Montoya next week. We would appreciate your prayers for safe travels over snowy mountains and for the physical impact of travel to have minimal negative impact on my health. Thanking the Lord for a wonderful husband who is taking time off work to get me there and home again, and for my parents who will be moving in to care for our sweet babies while we are away.

Checking In

IVIG #10 was blessedly uneventful. It took several hours and my nurse commented on how, "This process really beats you up!" as she observed the dramatic change from the "bouncy" (her description based on my generally smiling personality, not my physical feeling) happy me, to the girl who couldn't even walk across the room unaided, within 20 minutes of the start of the IV. An hour into it I was so miserable I was actually moved to the only bed in the infusion room because I didn't have the strength to "sit up" in the recliner anymore.

But thankfully I had no dramatic reactions afterwards, like I did after the 9th infusion, so it looks like adding zertec to the mix was helpful afterall. I'll have my 11th infusion two days from now, then see one of my specalists, Dr. Peterson next Tuesday. It has yet to be decided if I will continue with another round of infusions after #12 or not. I have very mixed emotions about what I hope the final decision will be. It has been a hard go, but if we are going to go for another 12, I really would rather just keep moving forward now, with my existing PICC line and established schedule, rather than having to try to start over sometime down the road. We'll see what the experts say...

I still haven't really recoved from our RV trip (or from the trip to Stanford before that) and it took more out of me that I thought it had in the beginning. I'm hurting a LOT the past couple of weeks, and while last Monday was amazing good (typically the day after an infusion is really bad for me), I'm not seeing a huge bounce toward feeling better toward the end of the week these past two weeks, as I had been seeing in prior weeks. Travel just takes a whole lot more out of me even than I realize when I first get home.

Prior to the trip, I would typically have a very hard Monday, so-so Tuesday and Wednesday, then often start feeling fairly decent by Thursday or Friday and on through the weekend until my next Sunday afternoon IV. The past two weeks, Thursdays have actually been my hardest days rather than the day I start noting improvement, and today I'm still really dragging. It is so discouraging to feel that I can never get "caught up" or "rested up" enough to get to a level playing field. I have been fighting a fever all week and just plain feel rotten!

My doctor in Stanford wants me to come back there for bloodwork next week and that simply isn't possible. I cannot even begin to imagine how I could cope with another trip right now and fear it would land me in bed hard for a long time to come. It's crazy that Dr. Montoya in Stanford tells me it is critical to "reduce stress" (including physical, emotional, mental...) then my insurance dictates that he's the only specalist they will cover and it takes a 3 or 4 day trip for me to see him (1 to travel, 1 to sleep once I get there, 1 for the appointment itself, 1 to travel home again), not to mention the physical aftermath of trying to recover from the trip. The whole insurance situation and denial of coverage for my local specalist itself is pure stress! RVing was a much more gentle option for me than a standard car trip, but as I'm finding out the hard way still two weeks later, still not the answer I had hoped it would be.

Happy Memories

After my post earlier today about tears, I'm thankful to share some happy memories. All our pictures from our trip to Monterey are now live on our RV travel blog. Enjoy!
P.S. Even if you visited earlier this week, there are a lot of new ones just posted tonight.

IVIG 9, Our Freezer Mess and Trip News :)

Our trip was wonderful. All the updates are now live at Adventures in an RV and pictures should be added by the end of the week. We came home to find the power out in our garage and all the food in our "outside" freezers lost (we had been stocking up on sales and had a lot of frozen meat, so it was a significant loss) and a horrible mess and smell to deal with as we cleaned it all out. My mom came over for moral support and we documented the whole clean-up process with a camera for our insurance claim. In the end we had to throw away two large garbage cans filled to the brim with stinky, rotting, fly-swarmed food. Knowing how many people are struggling to put food on their tables at all right now, it was heartbreaking to see such waste, but we are thankful that our home owner's insurance is going to cover $500 of our losses.

Physically I did surprisingly well on our trip, I think in large part due to the IVs. Usually I have IG treatment ever 7 days (on Sundays), feel pretty bad the first day or two afterward, then often start feeling noticable improvement by about Thursday or Friday - I still wouldn't go so far as to call these "great" days, but many weeks they are encouragingly "better" days toward the end of the week.

Before our trip I had infusion #8 on Friday, just 5 days after #7, and it was a miserable experience, lasting nearly 8 hours and putting me in bad shape on Saturday and even the day we left, Sunday. But I was alseep before 9 just about every day of the trip (some nights as early as 7:30) and napped in the big bed in the back of the RV ever time we traveled, so between all the sleep and the ability to not be strapped into the confines of a car seat, I did not suffer many of my common phyical issues with extended travel. We used my wheel chair a lot and specifically chose not to do certain things in hopes of being able to more fully enjoy the things we did attempt. I only felt truly let down by my body once, when I was unable to join my family on a hike to try to get to the California tunnel tree, but overall, we just took it slow and focused on having fun as a family. Even with my pressure point bands and bonine, I was pretty miserable (nausia, feeling like I just couldn't take another moment in a moving vehicle) by the time we got to Monterey on Sunday afternoon, but that was the worst of it.

I did not have IVIG #9 until this past Sunday, putting 9 days between infusions this time around. Not only did I have a couple of extra "better" days at the end of the week because I didn't have to jump right back into another infusion so quickly, the infusion itself took only 2 1/2 hours with no complications during the IV!!!

While the infusion itself went quite well, I did have a pretty scary reaction after coming home (about 5 1/2 hours after my benadryl and maybe 3 hours after the end of the infusion) where I began struggling to breath to the extent that we were debating between going to the ER (but were afraid they really wouldn't know what to do with me not understanding my whole history) or simply calling 911 if it got any worse. After a double dose of my inhailer and another round of benadryl, it took about about 45 minutes for the frightening episode to begin resolving, allowing me to breath more freely again. In the meantime I was dealing with violent shaking (I think from the albuterol), ended up eventually hyperventalating (actually what I think finally allowed my body to settle down as I super-oxygenated), my PICC line started bleeding again (got that stopped pretty easily with a sand bag pack) and I had to fight from throwing up due to sever nausia.

The whole time I just kept thinking, "What I wouldn't give for a home oxygen tank right now!" as this felt like almost an exact duplicate of the reaction I had had during one of my early infusions when we first realized the need for oxygen through the infusion process, but without the safeguard of medical care readily available. My primary care physician suggests that it may be because we did such a fast infusion (the only other times I've been able to do it in 2 1/2 hours have been with saline co-pumping, something we learned is a medical no-no) and that next week we slow it back down and that I take zyrtec the morning of the infusion along with the benadryl just prior to infusion. Zyrtec is 24-hour acting and is a different kind of antihystimine so can be paired with the benadryl. All I know is that I hope I don't have another reaction like that one! Only 3 infusions left, they we evaluate if I go for another 12-week round or not.

Our Vacation

I've posted daily updates from our trip at http://classicRVadventures.blogspot.com/. Would love to have you "journey along" with us and leave your comments, maybe with childhood memories of your own. :)

IVs, Stanford, travel, homeschool, Dance fundraiser

Wow! I just keep falling farther behind in posting health updates, so I'll do a quick overview and you can skim for the topics that interest you most. Each topic here probably should be it's own blog post, but I'm just not up to that, so I'll bold the topics and you can pick and choose what you read. :)

Weekly IVs 5 and 6
I've had 3 more IVIG infusions since I last posted about them in any detail, infusions number 5, 6 and 7. The 5th and 6th both went amazingly well. We thought we had found just the right combination of things to keep me from being reactive:
- IV drip of normal sailine during entire transfusion:
- 50 mg benadryl beforehand
- excedrin beforehand
- oxygen during the entire infusion
Both infusions done with this combination were over in only 2 - 2 1/2 hours with only minor discomforts!!!

PICC line issues
Then my PICC line decided it needed to start bleeding this week. I went in for midweek dressing changes on both Thursday and Saturday with blood dripping down my arm. Not fun. :( Thankful the PICC continues to be serving its purpose well and there is no sign of infection. The skin around it is getting rather chapped from the dressing changes, but we packed it really well with the weight of a heavy sandbag after yesterday's dressing change, and so far no signs of leakage yet today. (It had begun oozing last Monday morning after the IVIG #6 infusion on the prior day.) Hopefully we are past all that now.

Yesterday's IVIG (#7)
Well, maybe you caught onto the fact that I only mentioned 2 of the 3 past IVs going so well and that we had thought we had the right concoction? Yesterday we got there (Rick has a tummy bug, so my parents took me) and had a different nurse than we had for two prior treatments. Gave her the rundown on what was working and she informs us that IVIG is never to be dosed in conjunction with anyting else, including saline. Saline can interupt some of the effectiveness of the IVIG. Uggg.
So she agrees to give me a heafty dose of saline before hand to get me really hydrated, still lets us do all the other stuff, and will follow-up the IG with more saline, but even pulls out the fine print on the package paperwork and points out that she can't run the saline with the IG. I actually did realatively well with no dramatic reactions, but it made for another LONG infusion, getting there at 1:30 and barely finishing up before they turned out the lights at 7PM! Mom stayed with me the whole time so it was nice to have the company, but it was discouraging that after we thought we had it all figure out, we had to take such a backward step. Thankfully though, still no major reactions, so I'm striving to be content in that. And despite all the frustration and inconvience, I am beyond thankful to be receiving this treatment and life-giving medication at all!!!

Our trip to Stanford
I guess it's already been two weeks since our trip to Stanford. We left early on a Monday morning, after just having had the IVIG the afternoon before. I was throwing up by the time we reached Auburn (about 2 hours drive) even with a double dose of motion sickness meds and my pressure point "sea bands". I was very uncomfortable and exhausted. Fell into bed as soon as we got to the hotel and only got up again for a quick dinner. My family went sightseeing on Tuesday so I had the quiet hotel room to myself and slept a good portion of Tudsay and quietly read between naps - that felt wonderful to have such quiet!
Wednesday morning we had to be to Stanford by 8AM. Dr. Montoya didn't make it in to see us until about 9:30, but then he spent a full hour and a half with us! We were stunned that he took so much time. We really didn't learn anything new there, basically just confirmed that everything we had already been doing with Dr. Peterson was exactly what he also felt we should be doing. I guess our main "take away" from that appointment was Rick's better understanding of how stress negatively impacts my body and how basically anything and everything can cause some level of stress in either the emotional, mental or physical areas and that we need to limit as much of any type of these as we can. We came home and had to take a hard look at our lives and have cut out many commitments this year. As I posted in my Cutting Back thread, that includes my time spent on the internet.
I did better on the trip home, but have had a hard time getting out of bed each morning since the trip and my muscle twitching that had noticably diminished since starting the IVIG treatments has come back pretty significantly ever since the trip. That kind of travel is just SO hard on me. It's ironic that I'm told to "cut stress" but in order to get that advice my insurance sends me on a trip that is very stressful on my body!

I Hope You Dance fundraiser
Our highlight of last week was getting to attend the Whittemore Peterson Institue's I Hope You Dance fundraiser. Thank you, again, to all who enabled us to attend!!! I went in my wheelchair and did great for the first part of the program, but with so much stimulation (music, 500 people eating and talking, lights, sounds) I was pretty overwhelmed after about the first speaker. We did hear some very exciting things about upcoming announcements on Chronic Fatigue Syndrome research, so keep your ears open to the news in mid/late October when significant medical reasearch hits press release stage. I'm so hopeful about what's unfolding right here in Reno!

Homeschooling
We are still homeschooling this year. People ask me how we do it with my illness, and my answer remains that I simply cannot immagine trying to do a traditional school schedule with this illness! We have a flexable schedule, can start as late in the day as my health dictates, we can "bedschool" whenever we need to and I don't have to pack lunches or drive carpools. When you throw homework into the mix, I figure I would be putting just about as much effort into "schooling" my kids at the end of the day when everyone's already spent as I already do when I have the joy of working with them fresh in the day. So for me, homeschooling's really the only viable option I see right now, and I've very thankful for the opportunity to learn with my kids each day!
We are using My Father's World with Big J. in 5th grade, R in 1st. and Little J. still just coming along for the ride. :) The kids are also involved in Eagle Co-op and loving their classes there!


RV Trip
This week's going to be interesting. Rick's got a tummy bug, I'm trying to get back on my feet from yesterday's IV, then my next IV actually comes around on Friday morning. (I typically start feeling "better" from an IV about Thursday, so this week there won't be much room for rebound.) On Saturday we pick up our RV for our long-awaited family vacation. This has been in the planning for many months, since long before IVs or the Stanford trip or anything else and will be our first ever family vacation with all five of us and no one else. We are excited, but I must admit to feeling nervous too. This week Rick will do all the shopping while I work on packing. (Both my mom and a friend have offered to come help with the packing and I'm definately taking them up on their offer!)
I'm so praying this will be a time of wonderful family memories and that Rick and I will be able to be a true blessing to our kids next week without compromising my health farther. It's one of those decisions that we know comes with risk, and yet it's a choice we are making based on the needs of our whole family, for once not just making our family flex and stretch around my health limitations as they so regularly must do. We are going by RV so that I can rest in bed as much as I need to during the travel time and we are keeping our plans very simple, intentionally not trying to fit in visits with friends along the way or pushing through an activity-laden agenda. We'll be packing ready-to-eat foods and will do our best to simply "be" and focus on enjoying one another. Feel free to follow our adventures on our travel blog next week.
I'm praying my handcap license tag gets here this week. (I've had a plate for years, but as we won't be taking our van, I won't have handicap parking access if the window hanger tag doesn't come on time.) We realized on our trip to Stanford (Rick's parents drove us, so not our own vehicle) how important this tag would be for our trip, so my primary care doctor requested it for us the very next day. After her knee replacement surgery my mom had her tag within a week, so I'm hopeful it will come on time. Would you please join me in this specific prayer request?

Family Vacation...

We haven’t taken one in over two years. My health has been a huge factor as extended (or even not-so-extended) car trips are physically taxing on my body and air travel is too costly for a family of five. There are many places we would love to visit, but like everyone else, we are mindful of the economy and know that even if we can find a way to our destination, we will still face lodging expenses on the other side. So, beyond the simple “stay-cation” concept, is there any realistic way for our family to enjoy a memorable summer trip together?

When watching the evening news last night we realized that RV rental might be a great solution for our family travel plans! Because we would have the freedom of a “home on wheels” the travel part sounds much more doable both for my physical limitations and our budget restrictions. No need for extensive packing and unpacking as we lug suitcases in and out of expensive hotel rooms! No grumpy-from-hunger fussy kids due to waiting for overpriced (and often high-fat, lower-nutrition) restaurant meals or junky fast food.

My hubby likes to drive but gets easily frustrated with “kid noise” in our minivan. RVing would mean he could be up front and happy behind the wheel while the rest of us could enjoy family interaction farther back in the vehicle, not strapped in like ducks in a row, but able to read and play together without being a safety distraction to Dad.

RV vacationing is sounding more and more attractive by the moment. So I’m entering this blogging contest at Classic Adventures RV and will keep you posted if we take to the road in an RV later this summer! :)