Running With Hope (Hebrews 12:1-3): May 2013

Hello!
I wasn't able to update yesterday as I had a really rough day. It started Monday night with the Scopalomine patch they gave me to help with the dizziness. It's pretty much like a Dramamine patch for sea sickness. The two days I had it on, the dizziness virtually disappeared unless I moved really fast. I started to have bladder issues and felt like I had a UTI (Urinary Tract Infection for you non-medical lingo peoples). My vision started getting blurry and I was super drowsy and dreaming a lot throughout the day. I talked to the nurse and she talked to the doc and we determined that these were all side effects of the patch...so off it came. It wasn't until yesterday morning that I realized just how much it helped with the dizziness. I'm back to constantly on the verge of spinning, and the tiniest head movement makes me spin. This adds to the nausea so I threw up multiple times yesterday and last night even with Zofran (major anti-nausea med) on board. Yesterday afternoon I had some of the pleuritic pain in my left lung and then all of a sudden a sharp stabbing pain in my left ovary area. I was in such excruciating pain I was sobbing. I called Jord and he left work and came to be with me. I am so incredibly thankful to John, the owner of Sullivan Motor Company for truly making family a priority and allowing Jordan the freedom to drop everything and come be with me when I need him. :) They asked the "On a scale of 1-10 what is your pain level" and I was like, "12". They got me some morphine and the ovary pain or whatever pain in that area immediately went away but I still had some lingering lung pain and then for some reason I get this "on fire" pain right below my sternum in the center of my chest that radiates out and feels like "the pains" I've had for years. The Vestibular Therapist said my somatosensory system is just on overload so my body is going to do weird things. I knew I was anxious and was trying to take deep breaths, but when deep breaths send sharp stabbing pain through your chest, it's not very soothing, so I got another breathing treatment in the middle of breathing treatments. With Jord there and the Vestibular therapist, Wendy, I was able to calm down and set some new goals like pull up my own pants instead of having the nurses and family do it for me when I use the restroom. Yep, that's how minute my goals are these days. It's pretty humbling to be so dependent on others...knowing myself, I know there will be many frustrating days ahead, but I'm praying that my heart would be quick to remember that Jesus is still reigning on His throne in heaven and still in complete and utter control of every aspect of my life...right down to the very itty bitty components of every cell in my body. NOTHING escapes His attention. I know that in my head, but there will be times when I will need you, my dear friends and family, to gently remind me of this truth when I get angry or prideful or lean towards idolizing what I "could" have or sinfully compare my situation to others or go down the path of "if only" that Jord and I can both be so tempted to do. "If only I hadn't gone on Prednsone in 2010, if only Jord hadn't had a heart attack, if only we could have gotten inhaled antibiotics, if only fill in the blank." That is a very dangerous road to start down for your heart because it breeds discontent and bitterness and anger at God.

Instead, we need to remember the evidences of God's grace in our life--to "rejoice always, pray without ceasing, and in EVERYTHING give thanks, for this is the will of God for you in Christ Jesus." ~1 Thessalonians 5:16-18

The plan right now is to try and get me transferred to an in patient rehab facility where I will get more intensive rehab therapy and run a lower risk of catching something nasty from the hospital. The docs were not going to treat my sinus/lung infection as I was pretty stable but yesterday I woke up and my sinuses were fluorescent green and my lungs were a lot more thick and a dark yellow headed to yellow green. They took another sputum culture but the results will take a couple of days. We are in a very delicate situation. We can't ignore the infection if it gets worse, but at the same time we don't really know the exact antibiotic or drug that caused the Vestibular Injury. At this point we aren't even playing the "risk vs benefit" game its the more scary version: What do we absolutely HAVE to do, what med can we use that is likely to cause the least amount of damage and dizziness and what will insurance cover. Don't even get me started on insurance companies and the FDA labels...there is an inhaled antibiotic, Cayston, that is designed to fight the Pseudomonas that I grow but because I'm not a Cystic Fibrosis patient and no studies have been done on PCD patients (uh, there is ony 400 of us in the world and drug companies won't do clinical trials unless there is typically a large enough patient population that they can make their R&D money back...sad but true, it all boils down to the almighty dollar.) it is considered "off label." I was able to apply for an exception in 2011 but it took me 6 months of fighting tooth and nail to finally get it. When I did get it, I wasn't sick but I had fought so hard for it, I used it and then had a thrush infection so bad that it wouldn't go away for months, even with multiple courses of nystatin and fluconazole.

Bottom line: pray for the doctors to have much wisdom in discerning what to do and how to proceed and that finances wouldn't get in the way of going to the inpatient rehab and the best course of action for my care.

And as always continue to keep my sweet precious hubby in your prayers...he loves deeply and hurts deeply...and all my family and friends that are watching me suffer on a daily basis. I came in here walking and just had some typical green junk and now I cannot even sit up without support. It is super painful and discouraging to watch as my body gets fatigued or emotional and I lose motor control and my legs and body shake uncontrollably. At those points I have to make a conscious effort to tell my legs to "knock it off". Yes, I am talking to my legs, but don't worry yet, I've been getting plenty of sleep and talking to my psychiatrist on a regular basis so I'm not crazy yet! :)

Words can't express how much love has been poured out to us these last 21 days. Yep, 21 days and counting. The therapist noticed that when she is talking to me I am a lot less anxious and that company seems to be good for me. It's true--I hate being alone, and I especially hate it when I am sick. As a child, I would recuperate on the couch in the living room with live being lived all around me so I could still feel like I was participating in life, although I've had to say no to so many things I would absolutely love to do. The times I say yes anyway, I pay later with ear infections from water skiing, or PCD hangovers from pushing through and skipping treatments to go on a road trip or have a day of fun with friends without stopping to rest or do my treatments. Those are the "spoon" choices I have to make every day and Christine was right...we have to make constant choices on how to spend our energy or "good hours" so when we change plans last minute to do something fun with friends or family something else is sacrificed. A lot of times that is laundry, dishes, dinner, vacuuming, picking up the house etc. I am so thankful for a husband who is laid back and only cares that he has food to eat and clean underwear and clothes to wear to work...often times he finds them in the dryer as he has allowed me to spend my spoons serving others at church or spending time riding my horse with my family or doing tea parties with my Mom-in-law. So the next time I change plans and choose to spend an extra amount of "spoons" on you, be sure to thank my hubby for the unseen sacrifices he is making because he would rather have me fellowship and do something fun that have the house be clean. Ideally, he would like both, but he knows I can only do so much and chooses to look the other way at the clutter and the dust and when I worry about it not being clean he pushes me to fellowship and hang out with friends because he knows what a people person I am and how isolated I can feel at times. I could go on and on about how perfectly God made us for each other, but I probably should rest my eyes and brain and sign off for now before I make myself nauseous again!!

Thankful for my Greatest Earthly Treasure, Jord!
Rachelle :)