IVIG 4, heading to Stanford, and a Busy September

While this will be a long post, it covers many things. It is not a reflection of my energy level, but rather a collection of things I've coppied/pasted here over the past several days, not having the energy to make a coherant post out of any of it until now. So thank you in advance for bearing with my bullet-point method today and I hope you find something of use or interest in my collection of "stuff".


- I'm so excited! My fundraiser for the Whittemore Peterson Institute benefit tickets is about 90% funded now. When I set up that link I really had no idea what to expect, but my friends have been so generous and I'm so thankful! Does anyone else want to "Help Me Dance" on Sept. 12?


My infusion Sunday was "exciting" and I'll share details in a moment. Here are Tweets I posted yesterday moring (12 hours post infusion) in 140 or less word chunks:

- Insomnia thanks to #migraine meds

- 4th IVIG included pounding chest & need for oxygen tank but benadryl kept throat from swelling. Hope it helps in the long run. #cfs #mecfs

- PICC line made yesterday so much better. No 1/2 hour digging for IV veins! #mecfs #cfids #cfs #chronic #illness #infusion IVIG

- I've been awake since 2AM. If I try to go back to bed at 5 will I just make myself too groggy to function by 7 or help later???

- Decided 2 take a shower rather than get groggy going back 2 bed. Was pretty funny plastic wrapping my PICC arm! #mecfs #insomnia #infusion


------------------------
So yes, I had my PICC installed on Friday. The process of getting to the hospital, registering, getting set up in a sterile room, double checking everything for latex-free, and getting my arm ready for the doctor was all rather lengthy, but the instalation itself was over in about 5 minutes. I had a little vertigo entering the room and was quite dizzy sitting back up after the procedure (reminded me of the Tilt Table test when they uprighted me afterwards), but overall it was pretty easy. My body didn't like the stress of having a tube inserted from my arm to my heart, or maybe it reacted to the mild anesthesia (?) but I ran about 102 temp most of Friday afternoon.

A sweet friend watched all three kids from 7AM to nearly noon while I got the PICC, went up to infusion for training on homecare and jumped through the hoops of trying to get homecare supplies. Sarah even fed me lunch when I got back to her house to pick up the kids! When my homecare supplies and insurance process were finally ready about 4, my mom (just 10 days out from her knee replacement surgery) drove me to my appointment to pick up supplies and we spent another 90 minutes their receiving their training along with a "sale's pitch" of why we should be doing infusions through their center rather than at the hospital that our insurance approved. (Um, yeah, I'm just happy to have insurance approval on this. I am NOT rocking the boat by telling my insurance that I want to change anything! And as long as I'm as reactive as I am, I really feel safer having my infusions in a hospital setting in case something goes really wrong.)

Amazingly, and all I can think is that this is testament that the IVIG is doing SOMETHING positive for my body already, by the time I got home from the supply clinic and normally would have fallen flat on my face, my fever had broken and I felt good enough to join my family for a couple of hours at the state fair! This is so far removed from anything in my normal reality that I can't even put it into words. Friends, I didn't even use a wheelchair!!!!!

At the infusion on Sunday we started off with benadryl in hopes of offsetting the tight chest and burning/swollen throat and tongue I had experienced the previous week. It was so nice to walk in, hook up my PICC and not have any pokes! I did OK for the first while of the IV, then started getting a tight chest again and broke out the inhailer. That helped, but only for half an hour or so. I got a sore throat again, but not nearly as bad as the previous week and it did not progress to feeling swollen or involving my tongue. Then my chest started getting tighter and tighter and hurting more and more, with aching down my left arm as well. (That was also the arm with the fresh PICC and big bruise, so hard to say exactly what pain was coming from what.)

My nurse was working with chemo for another patient, so I couldn't immediately get her attention when I started having trouble breathing, but the moment she noticed my distress she ran over to flip off my IV and stuck oxygen in my nose. I don't have a very clear memory of nearly half an hour there (I know the timeline only because a show was just starting on Food Network when I started feeling like I was in real trouble and it was ending when I became more "aware" and stabalized again). At some point she was able to finish the chemo start and get back over to me to monitor my vitals and she said my heart was racing pretty hard. It's a scary process, but we are hopeful and prayerful that in the end it will prove worthwhile.

I think one of the hardest parts of the day was having my husband and kids get there to pick me up at the end and seeing them trying to process walking in on a very sick looking Mommy still hooked up to the last few minutes of my IV drip, the blood pressure, the pulse/02 monitor, and oxygen still in my nose. I am always sick, but I don't "look sick" most of the time, so this was something new for all of us to process.

A migraine hit at bedtime that night but we got on top of it right away, including meds and sleeping on an ice pack and when I woke up at 2AM I felt much better (but then could never get back to sleep). I ended up going into my sons' room about 10:30 yesterday morning to help our little one put away his stuffed animals and closed my eyes "just for a minute" and woke up about 1PM to a ringing phone! The kids had been good as gold, with the little guy curled up asleep with me and the older two quietly entertaining themselves and not even making any messes. I had no idea I had konked out like that!!!

For the next several hours I felt just a touch dizzy and a bit narcoleptic (every time I sat down or tried to read anything I either couldn't keep my eyes open to focus or actually did fall asleep again) and my throat was sore and raspy. There is absolutely no way I would have even thought of attempting to drive under those conditions as I could have easily fallen asleep behind the wheel before even getting to the end of my own street. My husband talked to me over the phone about 1:30 and said I "sounded drugged" but I really felt pretty good other than the sleepiness. I do know I have some cognative stuff going on as I'm having problems getting out words at times or typing the right words (this post has been edited and re-edited more times than I can count, just to be readable), but I felt some of the sweetest more "rested" feeling I have felt in a long time yesterday afternoon. I can't remember the last time I just felt "sleepy" - that warm cozy, "I want to curl up like a cat and take a lazy nap" feeling - rather than truly "exhausted" - that kind of pain and fatigue and extreem tiredness that can't be slept away and doesn't feel the least bit cozy. Yesterday I actually felt "sleepy" for the first time I can remember in litterally YEARS!!!!

I did have a bit of trouble getting back to sleep last night (finally crashed about 11) but once I got to sleep I slept soundly. This morning I gladly could have kept sleeping probably for several more hours, but our 3-year-old had other ideas and I've been up since about 7. I'm feeling more on the tired end of the spectrum again this morning rather than just sleepy, but still feeling better than many days. I am pretty sore today, all over, but again, certainly not my worst day. It's only 9AM, so it's hard to say how the day will unfold, but I'm hopeful that we will get back on track with school today since yesterday I couldn't focus to read.



- For all our family is enduring, I am continually reminded of just how easy we have it, how blessed we are. My heart is heavy for many, but if I could especially ask your prayers for two families, I would greatly appreciate having you join me before the Throne of grace on behalf of the Evans and the Schneiders.

Dan and Barb Evans are missionaries with Cadence International (the orgization my parents have ministerd with for 37 years) and Barb has just had surgery for a brain tumor that they are now saying will take her life within about 4 months. She has two adopted miracle children, I believe about ages 5 and 10 with the older one having some developmental delays of his own. I'm following Dan's updates on Twitter.

The Schneiders are a family from our homeschool co-op. Their older daughter was in a class with our older son about a year ago and their daughter, Erica, was in a class with our daughter when they were both 5. Erica has been undergoing treatment for Lukemia ever since. It has been a brutal year for this family. Erica is about to enter the most harsh stage of her treatment and will have a double course (typically only given once) but if this does not completely wipe out the cancer with the double course, there will be no more options and she will have less than 5 more years to live. I watch the cancer patients come in and out of the infusion center each week and know a bit of what they go through - I simply cannot imagine the pain and fear any child must process to endure all that or what it would be like to be a parent helpless to stop the horror for your baby.


- This Friday is my final appointment in follow up for the foot I broke last May. I'm doing well enough that I think I will just cancel the appointment. It's so nice to have something actually healing well! :)


- I'll have my 5th IVIG infusion on Sunday the 6th, then we leave the next day for the tedious drive to Stanford to meet with another specalist there on the 9th. If I'm at all able to still function by then, we will be back in Reno for the I Hope You Dance institute dinner on the 12th, though I will be thankful even to be functional enough to attend in a wheelchair after the trip to the Bay and back!


- We are still looking forward to our RV trip (the free rental I won by blogging) the end of the month and hope that works well as I can lay in bed as much as I need to while we travel. I have three articles I'm needing to write for September deadlines, two as a Natural Beauty Expert for Dr. Mommy and one I'm really excited about for (In)Courage on the topic of hope, and a radio interview for Rest Ministries National Invisible Chronic Illness Awareness Week (NICIAW) at noon on the 15th. It's a big month and I appreciate your prayers for wisdom in knowing my priorities and strength for each step God calls me to take.