"Dear Rachelle,
Thank you for the update. We are sorry to hear you have had a balance system injury and neurological tremors as a result of treatment.
It is not easy to face health issues day after day, and we are encouraged by your determination to praise God. We trust "Beside Bethesda" will help! If you have any mornings when you wake up and need courage we are praying Colossians 1:11 from the Message: "We pray that you will have the strength to stick it out over the long haul--not the grim strength of gritting your teeth, but the glory-strenght God gives. It is strength that endures the unendurable and spills over into joy, thanking the Father who makes us strong enough to take part in everything bright and beautiful that He has for us." May you know the nearness of God today!
Blessings in Christ,
Madeline
Joni and Friends
I immediately dove into the devotional "Beside Bethesda"...it is phenomenal! The card sits on the table with my plethora of health stuff right next to my bed so when I'm struggling I can look over and be reminded that God WILL give me the strength for each step of this journey called life. Sometimes I have to fight a little harder for those steps, but He always provides exactly what I need when I need it. Sometimes that means Jordan is there to hold me when I get overwhelmed by the pain and sick and tired of being tired and just need to cry--Roxy has even let me hold her while I sobbed--in fact I was crying so loud one time Jordan's sister heard me next door and came running in and held me and just told me it was going to be ok and then she prayed for me. Sometimes when the tremors overwhelm my body during vestibular rehab it means I pause, take a deep breath, close my eyes, and pray for God to give me the literal strength to take those last few steps even though my head feels like I am on a small boat in the middle of a storm tossed sea. Whatever I truly need, God is there every second of every day--answering little prayers and big prayers and it's truly a joy to see Him work in all the tiny little ways that aren't so tiny to me in those moments. I truly serve a God who hears the cries of the afflicted, holds you close in His everlasting arms, and whispers comfort in your ear and providing "exceedingly abundantly above all we can ask or imagine." (Ephesians 3:21)
So how am I doing physically you ask? Not the best. I'm getting better at managing the symptoms and knowing when to stop before the tremors kick in or how to cope better when they do come on or when my brain gets overstimulated. Rehab and horseback riding is helping a lot though. Looking down (like to put food on a plate) is still really difficult--that position just sends my brain spinning in a storm for some reason. I had my ears cleaned out by my regular ENT this morning, but after Jenn and I stopped at Sprouts and armed with sunglasses on inside because my eyes are super sensitive to light, a cart to lean on, my gait belt to help with the sense of touch, and focused eyes (don't look down for sure and don't move my head but pick a spot far away and focus on that and ignore all the stuff around you so your brain doesn't get overstimulated) I was able to do some of my own grocery shopping--and it was fun! It's funny how errands that usually are just another to-do item that is annoying when I'm feeling well is something I look forward to and wish I could do more often. Jenn had to unload my cart into the car and into the house and I had to rest a lot when we got home, but that is my victory of the day.
Back in February before I got sick, on Jenn's birthday, Landon, her, and I hiked part of Picacho Peak with the dogs. I have never been to the top so I called my brother that day and told him I wanted to go to the top. He said to work on getting in shape and we'd go. That afternoon I came down with the first of two colds that led to my BAHA being infected the first time and the rest is history as you know. He also broke his ankle in three places and had to have surgery...we were also supposed to go dancing. Obviously, neither of these things are happening right now, so I told him Saturday that when we get better we are having a dance party on top of Picacho! He thought that might be a little dangerous (I haven't been to the top so I'm oblivious) but I told him he could catch me if I fell. ;)
It's been neat to see the response we have gotten through the various fundraisers and the prayers, love, and support we have gotten from all of you! People I don't really know are contributing to the GoFundMe and leaving really encouraging messages. Others are sending checks/cash in the mail and that is a huge answer to prayer as there are some very immediate needs we have as Jord had a lot of unpaid time off work over the last several weeks caring for me. And today, my State Farm agent who I haven't met yet called and said that one of the ladies in the office had forwarded my blog to him. (I got to know her real well when there was confusion with the computer system switching our stuff back over from Montana to Arizona...one of the joys of moving out of state!) He said he'd love to meet us and see how he could help and is talking about getting some agents together to help out. Wow! God truly does "provide all our needs according to His riches in glory in Christ Jesus." (Philippians 4:19)
As I've been talking to friends and family about different options for the big awareness event I want to do in February it's really starting to sound like the best idea is to start my own foundation to help others in similar positions as me. There are foundations for Cystic Fibrosis patients for help with out of pocket expenses. I even found an Orphan Disease Foundation at one point but they only helped people with 5 or 6 specific rare diseases and one of my biggest frustrations has been falling through the cracks all these years. The PCD Foundation is focused on trying to get clinical trials and research on the medical end that will ultimately help improve our quality of medical care. There is a foundation that a PCD family is starting called One Breath One Hope but they are just getting started and don't have a lot of funds. As I've prayed about it, I've been burdened for people with rare diseases that don't have foundations or help. There is a guy, Noah Coughlan, running across the country (yes, you read that right---RUNNING) for the Third time. The first two times he did it to raise awareness for a rare disease called Batten Disease. This time, he's running for all rare diseases. He's coming through Phoenix in June and I'd love to get a group together to cheer him along his route as he's heading to San Diego to finish on the 4th of July...I'd REALLY love to be at the finish in July but we'll see how God provides! Anyway, you can find Noah on facebook and follow him there or go to his website Run 4 Rare to find out more about his efforts to raise awareness for rare diseases. Noah is doing a lot to help raise awareness, but there are still thousands of people--maybe more--in this country alone that don't have access to the best medical care for them or there is simply not a lot known about their disease as Big Pharma does things by numbers and the sad fact of the matter is that if there aren't enough people to make money selling pharmaceuticals too they don't spend their research time and money there.
I am currently in my physical condition just for that reason. Because I had to reapply for the Cayston patient assistance program and hadn't done that and my doctor's office didn't get the right paperwork to me in time, I ended up in the hospital in severe pain on IV antibiotics that damaged my balance and neurological system--for the fourth time. There are lots of others just like me that don't have access to the best medical care, largely due to financial reasons, so they have to settle for second best and all drugs have side effects--many of them nasty. In 2010 I was 10-12 hours from DYING due to the medications I was taking to combat a lung infection. You can read the details of that story HERE and HERE. In June of 2012 I took one dose of Levaquin and had irrational fears, insomnia, and the beginnings of psychosis. In May of 2013 I had my first severe vestibular injury from the IV antibiotic Ceftazidime and subsequently went into my third psychosis. (My Psychosis episodes all involved hallucinations, saying I was healed, I was pregnant, suicidal thoughts and a lot more...I LITERALLY went crazy...not once, not twice, but three times and all three times were directly linked to antibiotics used to treat PCD.) I am currently going through a second severe vestibular/neurological injuries due to antibiotics. Each time, the damage is worse, and the brain is a very sensitive organ and there may be permanent side effects from the damage. I will know more after I have the tests the neurologist ordered done.
Suffice it to say I know there are a lot more families struggling to make ends meet and going into debt to get the care their children and family members need. This not only takes a toll on the person that is affected by the disease, but everyone around them that loves and cares for them and sees them suffering. One of the hardest parts of walking this road with a progressive disease is knowing that your loved ones ache and hurt for you and hate to see you suffer and there is nothing either of you can do but pray and cling to Jesus and love each other through it all and enjoy every little moment. Living with a rare progressive disease means you have to deal with your mortality--this life is not forever, but there is an eternal life that depends on how you respond to the question "Who is Jesus Christ?" I am thankful I know He is my Lord and Savior and died on the cross to pay the penalty for my sins so this life here on earth is just the beginning of a wonderful beginning. This life is short and will be gone in the blink of an eye--treasure those moments with your loved ones because tomorrow is not promised to any of us! Jordan and I talked the other day about being so incredibly grateful we know we get to spend eternity together. Between his heart attack and my lung disease only God knows who will see Jesus first, but Jord said the other day we should be racing to get there. And he asked me to mourn for a month and then promise I would move on with my life if he goes first. I teared up and he tenderly held my hand and we talked about how painful it would be to be apart, but in light of eternity it is just like a blip in the screen. We aren't being morbid, but he loves me enough that in a way he hopes I go sooner so that my suffering will be shortened. Obviously we know God numbers our days and we are to be wise stewards of the time He has given us and live for His glory and Kingdom, but at the same time we are to yearn for THAT DAY when Christ comes back or takes us home and sorrow and sighing shall flee away!
Since I'm crying anyway, I'll share a song I discovered last night from Steven Curtis Chapman's latest album "The Glorious Unfolding." He wrote it for his wife of 29 years. Five years ago their 5 year old little girl was killed in a driveway accident when her 17 year old brother didn't see her pulling into the drive. The song seems like it was written for Jordan and I...10 years ago we married with joy and looking forward to starting a family. Our plans were definitely not God's plans for our lives and the last four years have been particularly difficult, but God has seen us through it all. I hope you enjoy this song, but get your kleenex out!
I'm gonna sign off for now, but look for more info as plans come together and once again, thank you for praying us through these valleys!
In His Mighty Grip,
Rachelle
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| Brother Sister Love |
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| Sunset at my parent's house! |
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| Short video of a ride :) |
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| Roxy and Momma resting after a long day |
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| Riding Buddy |
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| Purple Mountain Majesty from my Deck |
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