Running With Hope (Hebrews 12:1-3): Rare to the Nth Degree :)

Hey everyone!
So I haven't had a chance to do an update since I got discharged from the hospital. It's been pretty crazy trying to coordinate care, deal with insurance issues (so fun...not!), scheduling appointments, getting rides to those appointments, etc.

The biggest update is that I had another reaction to the IV antibiotic I was on several days after being home. It felt like my head was being crushed under water and my legs started with real bad tremors and my blood pressure was sky high. We discontinued all antibiotics and are working on getting the inhaled antibiotic approved to finish fighting the infection. Thankfully I was able to be on the IV for 10 days before having the reaction so it got the majority of the infection under control. My mucus is still thick and I am still having more pleuritic pain than normal so I feel like something else is going on but right now getting the vestibular and neurological symptoms under control are our top priority.

A recent thread on the PCD facebook page I am a part of asked about how bad pleurisy type pain can be. I was intrigued to hear other people's answers. Here are some of their descriptions: "It felt like my lungs were wrapped in barbed wire." "It feels like someone is holding onto your lungs and squeezing them." From someone with a lung function around 30% that is close to needing a lung transplant: "Pleurisy is the worst (lung) pain I have ever had." "I spent 8 days in the hospital because of it." "...is a 6'4" firefighter marine and it knocked him flat." I was astonished at these descriptions as I live with some type of pleuritic pain in my left side every single day of my life. That pain was radiating throughout my entire chest and up into my shoulders, which was what finally sent me to the ER...I guess that high pain tolerance thing is real. ;) When I was 3, I fell off of one of our horses and landed on my right hand. It bruised and I was guarding it a few days later so my Mom took me into the doctor...I'm told the doctor pressed on my hand to which I replied, "It hurts a little." They went ahead and xrayed it and it was broken. The doctor said I should have been on the floor in pain...later on my ear drum burst as a child and I didn't even complain to my Mom. I always use my high pain tolerance as a lead in to the Gospel with, "I'm thankful God blessed me with a high pain tolerance because He knew how much I was going to need it." I live with so much pain everyday that I don't even think twice about a lot of it, so when I see these threads on facebook with fellow PCD pals and their descriptions it takes me by surprise, but is also comforting to know that it's not all "in my head" as doctors and managers and people that can't "see" my pain that hides behind the smile and bubbly personality have made me feel in the past.

I saw a neurologist yesterday and after going over all my symptoms he says, "Well you definitely have issues." Tell me something I didn't know! :) I came out of that one appointment with 4 tests and a follow up appointment. He wants me to have an EEG (Electroencephalagram or test that measures electrical activity in your brain), an MRI of head and neck to determine cause of tingling down left arm, and nerve studies of upper and lower extremities to look into the tremors. Those tests have to be done on different days and he prefers a testing facility in Phoenix, so I will be needing a place to stay overnight and more rides around Phoenix. :)

A friend is coming on Friday to help me get some things organized. Top priority will be an online sign up so I can add rides I need to different appointments and people can sign on and see what fits into their schedule and that way I don't have to spend hours (literally!) on the phone expending energy figuring out last minute rides. It's been a little extra crazy for my family as my brother broke his ankle in three places playing kickball and had to have surgery yesterday so between the two of us we are giving Mom (and everyone else close to us) a run for their money...life's never boring in our family, that's for sure!

Candy is also going to help me organize a "Go Fund Me" account as many people have asked how they can help, and lots of them are far away, so this is one way we could greatly use help. Jordan's paycheck was only $200 last week from all the missed work, so we definitely have some immediate needs. Thankful to know we serve a big God and He always provides, but often He uses friends and family around us--for those of you that can help in this way, THANK YOU!! For those that can't--PLEASE do not feel obligated or guilty as there are many ways to help us, first and foremost being praying for us. God accomplishes much through the prayers of His saints and we greatly covet those prayers now--and He is answering. Jord and I are both in a great place spiritually even though life is kinda in turmoil right now. Funny how God usually shines brightest when we are at our weakest.

We are also going to look into a local fundraiser of sorts for the more immediate needs--thinking about getting some Tshirts made which would serve two purposes--raising awareness for PCD and more immediate funds to help with the immediate needs. I'm also working on plans for a big fundraiser/awareness next February. February 28th is Rare Disease Day and my birthday is the 23rd, and purple is my favorite color and Amythest is my birth stone so it makes perfect sense to plan something big and fun then, so keep a look out for those plans as they come together. :)

Finally, a fun statistic. As many of you know, Jord's Dad is a statistical engineer--I was talking to him this morning and gave him the stats of how likely it was my parents would even meet, let alone have a child with PCD and that out of the 500 in the world diagnosed, I am one of 9 that they can't figure out WHY my cilia don't work because they have all the parts and have good movement, it just does washing machine instead of stair-stepper. I recently signed consent for some research Dr. Knowles is doing on my genes, so it will be interesting to see what comes of that research. :) Anyway--ready for the statistical probability that my parent's would meet and conceive me???

3.3 in 100 QUADRILLION...that's 3.3 with 14 zeros behind it...

Mom and Dad...you should have bought a lottery ticket!!!!

I need to sign off and get some rest now but have lots of blog post ideas wondering around in this brain of mine so hopefully I'll get in some sort of routine and be able to keep you all updated. Hugs and prayers to all from Arizona!

In His Mighty Grip,

Rachelle