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.

Tears Today

The mountain-top emotional high of finally having answers has led me to exhausted tears today. Don't get me wrong. I'm still so amazed and thankful about the discovering of XMRV and it's link to CFS / XAND. I am still every bit as thankful for the diligent work of the Whittemore Peterson Institue (WPI).

But today the tears finally come. Tears of thankful release after years of pent up frustration over lack of answers. Tears of exhaustion on all levels, from physical to emotional. Tears of feeling overwhelemed at the road ahead - it feels like the past 19 years of my illness have simply been walking the road to find the starting line, and now that we've finally found it, now there is still the whole marathon to run ahead.

What have I exposed my family to? What will be the long term impact for all of them because of every decision I've made thus far? I'm glad I was blistfully ignorant when I choose to marry my husband (and obviously to engage with him in a sexual relationship) or when we set out against the uphill battle of infertility. I was ignorant of the fact that I am positive for XMRV (and yes, I was part of the test study, and yes, I did test positive). I'm so glad I didn't know, when I choose what I believed to be the healthiest possible choice for my babies, to breastfeed them, that the retrovirus XMRV is passed through bodily fluids.

Had I known, would I have made any different decisions? That's an impossible question to answer, for I look at the 4 most precious loves of my life, and I cannot imagine any different path than the one we chose; I cannot imagine not having any of them or the wonderful memories we have built together. So I'm thankful I was never in the position to make that choice, though I did try to break our engagement long ago (because of my fears over my health) and my husband would not hear of it, so for the question of marriage, I know he has no regrets and I find that so amazing! I do find myself grieving anew Noel, Joel and Hannah, our three precious babies who did not survive to live birth, and wonder again, with this new information, what role my health played in their tragically shortened lives.

For those earlier on the path than I am, I feel for you in those major life decisions that still lay ahead of you while so much unknown still lies on the table. I am very thankful to know that XMRV is not airborne nor is it passed through casual contact such as touch. While I can't help but wonder, and we obviously need to pursue testing for them, we do not even know for a fact at this moment that any of my family members will even test positive for XMRV. (If they do, that will be their story to tell, not mine, so I will not be posting medical information about any of them unless they some day ask me to.) It is simply the very fact that they need to be tested at all, because of their intimate relationship to me, that breaks my heart, and for that I also find myself in tears today.

If I have cause them harm already by what I did not know, what can be undone by what we discover now? I have to see this whole "starting line" as a wonderful window of hope, not only for me and the millions living with active neuro-immune illness already, but also for those who may have been exposed through our ignorance, that they might be spared our trials in the future because of where we stand today! Should XMRV prove to be the underlying cause of fullblown CFIDS and even possibly other neuroimmune conditions, then this discovery could mean a significant chance for a normal life in their futures!

It's so easy to feel undone, overwhelmed, anxious about all the what-ifs and could-becomes. Instead I simply must take one day at a time, watch this process unfold, and pray for great wisdom for the wonderful people who have dedicated their lives for seeking our answers and offering us hope. Tears come with the territory of CFS / XAND. My hormones and emotions can take wide swings and fluctuations by the very nature of my illness. Today is a tearful day and that's just the way it is.

More About XMRV and CFS

This article at http://www.oslersweb.com/blog.htm?post=638469 was so helpful in helping me sort through some of the rumors and "backstory" I've heard over the year about Chronic Fatigue Syndrome research, the CDC and various CFS organizations. It highlights what a huge breakthrough this is and why. I might not agree with all of the author's word choices, but her overall message really resounded with me.

I woke up yesterday morning with blurry vision (something I've been struggling with, but much more intense than normal) and in so much pain that I could hardly move without tears, couldn't let my kids even touch me (and we normally are big snugglers in the morning). It took a full hour and a half after pain meds before I could move enough to even get out of bed, then I was still in a lot of pain all day long. My dad had to drive the kids and I to their homeschool co-op and I had to use my big wheel chair that I haven't broken out in months (usually I use the smaller "transport chair" even though we refer it it as a "wheel chair" too). Don't know if this was finally the backlash from my trip, or still recovering from the scary reaction I had after Sunday's IV, or "just becuase".

I'm still hurting more than normal today, but significantly less than yesterday and my brain seems to be less foggy than it was when I was grasping for words and concepts continually yesterday. My vision is better again today, but this reminds me that I really need to get in for another eye exam, though I really have the feeling glasses aren't going to be the whole fix here and that I'm overdue for another MRI and brain spec scan.

Emotionally I'm on a "high" with the news of this research breakthrough, but that caused me to stay up til after 9:30 reading all over the internet, so I'm paying for my late night now and hope I don't have an additional "crash" as the adrenaline from the excitement begins to wear down. But how could I be anything but excited about such amazing and potentially life-changing news!

HUGE NEWS for CFS research!!!

Today's announcement of the discovery of the XMRV retrovirus' link to a debilitating neuroimmune disease that affects more than one million people in the United States, Myalgic Encephalomyelitis or Chronic Fatigue Syndrome (ME/CFS), is of particular personal signifcance to me, offering such hope for answers and eventual development of reliable treatment for those of us living with neuro-immune illnesses like CFS.

I will be posting more on my own involvement with this research study and why I am so excited in coming days (today has been a very bad day for me physcially, and I'm just not up to posting much at the moment) but in the meantime, please find out more about this amazing breakthrough research at http://www.wpinstitute.org/xmrv/index.html and be sure to read through the excelent FAQs they have posted for you there on the Whittemore Peterson Institute website.

Other links related to this research:
NIH press release

95% of ME/CFS Patients Positive for XMRV, with More-Refined Test

Virus Isolated in Chronic Fatigue Sufferers

More links to come...

Insomnia & Hives

I've been WIDE awake for the past two hours. Feel drained and exhausted and want to sleep, but not happening. Finally got up in hopes of letting my hubby get some sleep as I've been flipping and flopping like a fish!
Also have a few hives. Just small ones, but SO itchy. Noticed the first one inside my elbow just as I was falling asleep last night, now I have one on the oposite hand and one on my side. Three doesn't amount to much, but they are kind of blistery looking and I've been running a fever this week, so don't know if this is something triggered by the IG or it's own little viral bug or just another flair of my crazy immune system...

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. :)