Health Update and Fun Visiting Family :)

It’s been awhile…I keep putting an update on my to do list and it keeps getting put off for other things. Life has been crazy, but good. The amazing news that I shared very briefly in my last update from the doctor’s office was that my lung function (PFT’s) increased with the use of my new machine, the Volara. It’s a combination of the metaneb and the IPV machines that are in hospitals. I had never used a metaneb, but I used the IPV machine anytime I was hospitalized at UAB and it was much more effective for my lungs. The crazy thing was that insurance denied multiple appeals and even a second claim. The machine costs $20,000—which is a lot of money. However, when you consider how much one day in the hospital costs, it would behoove the insurance companies to pay for the home machine as it keeps us out of the hospital longer and we avoid picking up other bugs while we are there. A single hospitalization for me is well over $20,000—I think one of my most expensive stays was over $200,000 in 2016. Thankfully the company that makes the machine, Hillrom, has a financial aide program and we qualified for it so we were able to get it for a fraction of the cost, for which I’m praising God so much for! I can do a 10 minute treatment on it and I feel better than doing my 30-40 minute treatment on my old machine. I’m still using both, but if something comes up and I can’t get a full 40 minutes in, I can do 10 and still know I’m taking care of my lungs. As far as the vestibular injury goes, I have made a lot of progress, but I still have a long way to go. I’m able to drive when I’m well rested during the day as long as I’m not on busy two-way roads. I can get on the freeway because the traffic is all going in the same direction. I still use a LOT of coping skills to do this—I’m most comfortable driving our 1985 corvette that we have the top off of and so it’s a lot more open and I can focus on things far ahead if I need to. Night time driving will be a very long time—I’m still EXTREMELY light sensitive. My ENT explained the reason that fluorescent lights are so difficult right now is that they are actually a pulsating light and not a steady light. It’s not enough to where the eyes pick it up, but my brain is reacting to that. I still wear sunglasses inside a lot of public places and if I have to turn on overhead lights at home. Standing on a piece of foam with my feet in a wide stance for 30 seconds still makes my brain think I’m on a roller coaster. My brain fatigues from being inside a lot and I’m pretty sure I explained why male voices are harder for me to listen to—in case I didn’t my ENT again said that the audio wave-length of male voices is longer so it hits my nerve longer and makes me dizzy and nauseous after a bit. Father’s Day was the first time I was able to sit through an entire church service without having to walk outside and drink a lot of sparkling water and eat ginger chews. If I’m fatigued church can still be hard to sit through. I have a vestibular test scheduled for August 14th—I scheduled it in March when I first had the injury as it was the first available at UAB. I tried to get in with an office in Huntsville but the morning of my test the office called at 7:30 and canceled my 8:00am appointment because the doctor was stuck in New York due to a canceled flight. It was frustrating, but my trust is in my sovereign God who knows all things and at that point I just decided to keep the test at UAB and not try to squeeze things in. It will be a miserable test as they will do things to exacerbate your symptoms and then measure your brain’s response. My ENT at UAB really wishes they had a vestibular lab so they could have tested me right when it happened, but all in God’s timing. I figured out last night that I can listen to Jim Newheiser’s counseling training through the IBCD to continue making progress towards a certification through ACBC or the Association of Certified Biblical Counselors because his voice is familiar from a marriage conference he did at our church and the other counseling training I listened to prior to my vestibular injury, and I just need to be doing something like cooking so that my brain is not solely focused on his voice. God continues to place people in my life that are walking through very difficult valleys and He continues to redeem my pain and suffering and some sinful choices I made and the seasons of depression to be able to empathize with people that I might not otherwise be able to. Obviously, God’s Word is all-sufficient and a biblical counselor does not have to experience the same thing to counsel someone, but it’s 2 Corinthians 1:3-11 at work: “Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction so that we will be able to comfort those who are in any affliction with the comfort with which we ourselves are comforted by God. For just as the sufferings of Christ are ours in abundance, so also our comfort is abundant through Christ. But if we are afflicted, it is for your comfort and salvation; or if we are comforted, it is for your comfort which is effective in the patient enduring of the same suffering which we also suffer; and our hope for you is firmly grounded, knowing that as you are sharers of our sufferings, so also you are sharers of our comfort. For we do not want you to be unaware, brethren, of our affliction which came to us in Asia, that we were burdened excessively, beyond our strength, so that we despaired even of life; [Paul was taken to the end of himself and thought he was going to die, but God was there!] indeed we had the sentence of death within ourselves so that we would not trust in ourselves, but in God who raises the dead; who delivered us from so great a peril of death, and will deliver us, He on whom we have set our hope. And He will yet deliver us, you also joining in helping us through your prayers, so that thanks may be given by many persons our behalf for the favor bestowed on us through the prayers of many.” I’m very excited to be able to continue down this path and be better equipped to help those around me that are deeply hurting. I’m gonna sign off for now…I’m actually in the Dallas airport typing this on pages to post later because I’M HEADED TO TUCSON TO VISIT MY FAMILY AND FRIENDS!!!!!!!! To say I’m excited is an understatement! :) By the time I’m able to post this I will add the welcome pictures! :) :) :) :) :) I've been here for about a week now and it's been so much fun, but there have been some challenges and I'd love your prayers for some unspoken prayer requests. Thankful God is in complete control reigning on His throne now and always and the He never changes!

PFT’s increased!!!

I'm still waiting to see Dr Solomon, but my PFT's started at 60, then 66, then 70!!! I havent hit 70 since before 2018!!! I recently got a new machine fir hime called the Volara, and its helping!!!! will do a more detailed update, but wanted to share!

Been a Bit

I just wanted to hop on and give y'all a short update...we've been on a staycation with Faith and Jonathan this week, and while its been a lot more staying because of me and Faith not feeling the best this week, its been so nice to not have doctor's appointments and to spend time together and have Jord home. Im actually in the waiting room to get my hearing aide programmed, so after 5 years of going without one cause I lost it in the craziness that was the summer if 2018, I will be anle to hear again! Im super excited!! We did a day trup to Nashville Tuesday with Jonathan, and that wiped me out pretty good so thats why I crashed Wed and Thurs. I hot some good sleep last night--actually slept til 7 which is late for me lately! Gonna run so i can post this before I get called back!

Life is Crazy, but Thankful to be Living it! :)

Whew! So much has happened since I last wrote....I had vestibular rehab today and I was telling my PT all the things that had happened just this morning and she was like, "That all happened this morning?! And you made it here??" LOL So backing up...I can't remember exactly where I left off but after going to the ranch on Wednesday I spent time with my puppies, was supposed to have an appointment with a Nurse Practicioner at an office here that could do a vestibular test (VNG) to figure out exactly where my brain is at and my appointment was at 8 and I got a call at 7:27 saying the doctor was stuck in NY as his flight didn't go out so they needed to reschedule...it was a voicemail because they called in the literal minute I walked out to the garage with Jord to tell him goodbye for work. Mom T. was already headed my way so we just went to breakfast instead of going to lunch like we had planned and I spent some time with her at her new house. Friday I had accountability group with my friends Sarah and Mary Ellen--two precious sisters here. We've been meeting on Skype every other week for an hour for almost two years or probably over two years now and it's truly been a blessing in my life getting to know these sisters better and having a place we can share and encourage and just live life together. I was able to get a few things done around the house, but mostly I rested from Tues-Thurs being busy days. Then Saturday I ended up helping watch 7 kiddos with my 17 year old niece, Zoey. We were on a time crunch and had to run to WalMart before heading to watch the other kiddos so I came up with an idea of me and Zoey each taking one of her younger sisters and teaming up and racing to see who got done first so it would motivate Zoey and her sisters to move faster. We let the girls pick and Neriah picked me (she's 9) and Lily wanted to be with Zoey anyway....it was raining and Lily grabbed the only umbrella and we all got soaked but Neriah and I won by a longshot. Before we got out of the car Lily said, "we're gonna lose" and was ok with that so when they got back a brilliant idea struck--"Sorry Lily but loser loses the umbrella!" I'll share the picture we took in the car because even with the umbrella we were all soaked cause it was a good old fashioned Alabama storm and Lily's face was not happy, but hopefully she'll try next time she has to race! :) Life lessons come in all shapes and sizes lol and it's fun being an Auntie. We got to the friend's house and it was a crazy but fun couple of hours. Their youngest was not sure what to think of my machine and I got to meet their new crested gecko, Oscar, and their new parakeet, Amy. We had a lot of fun and then headed to Neriah's dance recital....I thought I would be ok cause I envisioned something totally different than what it was....so two dances into it I was so dizzy and nauseous I had to escape out to the lobby and eventually outside because when people would come from other things (it was at the Von Braun Center so the lobby hall was super echo-ey) and stood to talk, I would spin even more. I was downing ginger candies and bubly and this was even with hydroxixine on board cause I knew it was going to be hard, but very much underestimated it. I was able to watch Neriah do one dance and then I went with Brandon and Lily to get food and had Jord meet me there to take me home. It was very disappointing for me and I was in tears at one point, but God is faithful, He was with me and comforted me. I literally got home and crashed HARD...I fell asleep at 6:30 without doing evening treatments and slept until 5:30 in the monring--I really needed that sleep. My brain was still tired and overstimulated from Saturday so I was able to be in the sanctuary for worship but couldn't listen to any of the sermon so I spent most of the church service walking around outside. I was so grateful to be there though--I walk in and immediately feel refreshed and like I'm HOME. What a sweet foretaste of heaven our church family is--so very blessed to be here!!! Yesterday was a bit crazy cause I got Jord off to work but he wasn't feeling good so he ended up coming home and crashing after two hours, so I was taking care of him and trying to catch up on house stuff because nothing go done around the house all weekend. He needed meds from CVS and since I was doing ok with my morning dose of hyroxixine he okayed me driving the corvette the back way to CVS that's 5 minutes from our house. The corvette is an 85 and so you can take the hard top off so I can see a lot easier and pick focus points and so I did get a focal migraine and was super nauseous by the time I got there, but it resolved when I got home so this is a HUGE victory. Definitely not driving far anytime soon, but at least I know I can get meds when we need them. Then this morning I had rehab at 9 and I was taking care of Jord and trying to get out the door and turned water on to fill a bowl to rinse my nebulizers after treatments and then walked off and forgot about it......and started getting ready. I remembered I might need my swimsuit cause my driver, Sarah T (different Sarah from above) was taking me to rehab and then we were going back to Mom's to help her watch kiddos with a kiddie pool while Kayla went to her first OB appointment to get an ultrasound etc. I stopped getting ready and walked out to put my swimsuit in my backpack and our kitchen and part of our living room were flooded.......I started grabbing towels and cleaning up and was very thankful Jord was so sick that he wasn't going to walk in and see the mess. I got it all cleaned up and then walked in teh office and was like, "Please don't kill me but......" Our flooring is LVP and isn't supposed to get wet and there was one spot where it was already kinda split a little and the water seeped in there and around one portion of the wall. I'm really praying it didn't seriously damage it and I'm thankful Jord didn't get upset he just asked me to slow down and think. We got him some Prednisone today and I gave it to him before I laid down for my nap and he was like a different person when I woke up--it was all inflammation in his lungs that was hurting him the most. Thankful he can take it! After all that, I made it to rehab, told her all that had been going on and she was amazed I was able to do all that I had been doing and so because I was already a little nauseous from cleaning up the water she just had me stand on a foam pad and focus on a cross she drew on a paper so I had a focal point to focus on. Yesterday it popped up in my facebook memories that 10 years ago was my first vestibular injury with one of my favorite pictures of Crash...I was in a wheelchair because I couldn't even sit up on my own because I had no coping skills and had no idea what was happening. Jord brought Crash to the hospital to see me and she buried her head in my lap and someone snapped a picture and it's one I will treasure forever. In my memories today it I shared how one of the kids from our church at the time (Grace Bible in Phx) had drawn me a picture of the cross (It was James Kershaw....and he's not a kid anymore lol!) and when my therapist Wendy, came to see me, she told me about focusing on one spot visually and moving your body without changing your gaze. I talked about how focusing on that cross reminded me that I needed to keep my eyes fixed on Jesus to make it through that valley--and oh how true that is! Then we head to Mom's (sufficiently dizzy and nauseous and brain tired from rehab) and a worker broke a window at Mom's trying to replace it so she had to really quickly send the kids to another friend from church's house that lives in their new neighborhood so Sarah and I pulled a wagon over to the Apperson's to pick up Alice and Knoble. Knoble fell asleep in the wagon as we were getting back to Mom's house so I grabbed him real quick and put him on me and he was out. Kayla said he wouldn't transfer and I knew he'd be a bear if he didn't get some sleep, so I got baby--well toddler--snuggles for 30 minutes and it actally was good cause it forced me to lay down with him on me and listened to soft worship music and patting him to keep him asleep helped my vestibular system calm down. We ate lunch, saw the ultrasound pictures of the baby on the way, and then ran by CVS (yes, again...it's seriously like my home away from home--I know all about on of the guy's dogs that works there lol!) to get Prednisone for Jord and then I came home, got him more meds, did treatments, and then crashed HARD again--big surprise! Got a little over two hour nap and then got up and Jord was doing so much better. I walked the dogs, watered plants, got some dinner, and here we are finishing up treatments and updating all of you. :) So now you know why I haven't updated in a few days LOL. I so appreciate all the prayers and people checking in and loving us and supporting us. I have nothing planned for tomorrow morning but then we have a high school graduation for Micah Payton and then on Thursday we have Zoey's graduation. Lord willing, Friday will be another crash day. In the midst of all of this, I've also been getting updates on my dear friend, Candy, who had her second chemo last Tuesday, and it has been really rough for her so if y'all would be praying for her and her family I'd very much appreciate that! I'm also incredibly grateful that through all this craziness, I've been exhausted at times, but I was able to sleep and recoup and my new machine is making a huge difference in the way I feel already--very thankful! Here are some pictures and then I'm off to bed! Oh yeah--my nephew Ryker, also had his tonsils taken out and had some rough days so Aunt Shel sent him a stuffed dinosaur he named Bluey lol...its the little blue one...this kid is crazy about dinos lol.

Yahweh-Jireh—The God who Provides

It's been a couole days...somce getting off IV I've been getting back into a routine at home. Ive been able to walk the dogs for at least 2 miles and then go to vestibular rehab yesterday. Monday I tecovered from the weekend--after Saturday's celebration, we had church and Mother's Day so I was wiped. Today, after trying many times, I finally was able to get to the ranch! Victory Alliance Ranch is a ranch that specializes in working with veterans with PTSD and other injuries and also children with disabilities. They are going to compete in the state Special Olympics show this weekend. My friend Fathom drove me and we cleaned out stalls and swept the aisle and then I was able to help bring the mares in for feeding time. The owner, Karen, rescues horses--she has 73 equines, including a handful of donkeys. Her most recent rescues from a kill pem had all their teeth pulled...sin is ugly and evil! So thankful I serve a just and holy God who will judge every sin One Day! It was amazing to just be around the horses--oh! She has a Russian Buddony mare who had a colt recently named Yuri--we gave him butt scratches abd he absolutely loved it. I had never heard of this breed until I went to the ranch yhe first time a few months ago. It was bred to be a strong molitary horse from 1921-1940's in Russia. It was so sweet to escape from all the doctors and rehab and feeling cruddy and just breathe in horses and love on them. Horses are truly one of God's greatest gifts! Now to the title of the blog--my God who provides--Since getting home from the hospital I finally hot the Volara--a lung machine that is $20,000 and insurance denied both times. Hillrom, the company that makes them, approved me for financial aid for a mere fraction of the cost so I have it and have been using it and could immediately tell it gets the medicine deeper and just helps me clear out mucus better. Im SO thabkful for this! Then, insurance approved my bearing aide upgrade request and it came yesterday!!! I just have to make an appointment with my audiologist to program it and theh I'll have a hearing aide again for the first time in 5 years...I lost my old one in 2018 after Grandma passed away and life juat went crazy. A lot of people dont realize i have 80% hearing loss in both ears, but lip read and its amazing how your brain pieces words together from hearing parts of words. Tomorrow I see a new ENT murse practicioner in an office that does a special vestibular test. I couldnt just get the test--I had to see one of their docs first so I have that in the morning at 8. Enjoy some pictures from the last few days!