Tuesday was my oldest baby's birthday. 16!! So, Hannah and I enjoyed a pedicure to celebrate. I had a minor migraine that day too which put a damper on things for me, but we had a good time anyway. Cindy got a taste of parenting a tough child as she graciously took Thomas for me while we got our pedicures done. While I was getting hot paraffin wax treatment on my feet, Thomas was keeping Cindy on her toes. :)
Afterward, we all four ate at Pho Van in Beaverton. Portlander's---go eat there.
Awesome food, excellent service, inexpensive and healthy. I don't know who wouldn't love that place. I can't recommend it enough. Order a #50 or #51 and you won't regret it! :) Also, try the banana bread pudding or ginger creme brûlée for dessert. I am going to miss Pho Van!
Today, I got a crash course in all my IV treatments. I learned how to mix my IV's which will save me a ton of $$ at the compounding pharmacy. Doing my own IV's at home saves me $100-150 a pop too. I've spent a fortune at this clinic getting treatments 2-3 days a week, but their prices are reasonable for what they do and they are graciously haggling with insurance for me and getting some of my treatments covered. Maria has had to negotiate every single bill since they have no contract with insurance company. She showed me her notes on one bill today and told me that she called three times for that one alone to argue and finally got them to cover that bill at 69%. Yeah! Her willingness to argue with them when she has nothing to gain by it is a huge blessing to me. This kind of care above and beyond has been par for that clinic and I am so impressed. So, hopefully because of Maria, money should trickle back to me from the insurance to help continue treatment at home and my family really needs that!
I accessed my port myself today. The nurse helping me has been an RN for 40 years and has never seen someone access their own port. She was nervous about the idea of it, but the doctor wanted to give it a shot so that I can continue treatments at home and he trusted in my abilities having done my own picc care with two picc lines. It wouldn't be possible to get these treatments done anywhere else as Dr V doesn't have prescription privileges in Kansas. So, it's important for continuing treatment that I learn to do it myself. I accessed the port with a curious audience of onlookers without any trouble at all. I was amazingly calm and ready to do it. I honestly wasn't sure about it a week ago after the port was placed and today I was thankful for the gift of a steady hand and cool head as I essentially stabbed myself in the chest with a 90 degree bent huber needle and drew out a half bag of my own blood for a blood ozone treatment. A little bit nerve-wracking and gruesome, but amazingly, I wasn't even the slightest bit nervous. We used the access for 3 IV bags today. It worked great! My nurses bragged to every patient and person that came in the clinic about how amazing it was that I did it myself.
I've had more success with a few weeks of treatment here than in years of battling this with antibiotics. I'm not sorry for the treatments I did at home, but this is a more comprehensive plan and has been more successful because of that. I've gained a lot of functionality back in a short time. We have figured out the root of several symptoms and are working to fix the problems. We are still trying new treatments and testing the results with frequent blood work and clinical symptoms to see how I respond. We've only really touched the tip of the iceberg of my health problems, but the few weeks of treatment has resulted in incredible gains for me. This is a marathon and will take a long time to complete. I'll be following up by phone every couple of weeks and will fly back every few months for a week at a time for a face to face. I had lost hope this year that I would ever be well again, so it's nice to have hope restored alongside some quality of life. I cried as I left the clinic today. ;(
I learned last week my Lyme doc at home has left the practice he was working with. This is bad timing for me as well as many others. He hopes to be set up again soon somewhere else but everything is in limbo and I can't rely on him for treatment until he's up and running again. I am glad I have a second Dr now!
Please continue to pray for healing as I'm not well yet, just improved.
Pray for safety of the treatments and management of side effects so far away from Dr V.
Pray that my doctor at home would get set up in his practice soon and that he would be able to help me continue treatments by prescribing the things I need there to reduce the cost and hassle of shipping it all from Oregon.
Pray that insurance will kick in and pay for a good portion of my treatment as this has cost thousands and thousands of dollars and we have paid out of pocket up front for it all. I'm looking at 2-3 more years of treatments and need our money to stretch as far as possible to be able to complete all that needs to be done to regain what has been lost.
Pray for all the many loose ends and details I have to wrap up tomorrow. We fly our Sat early. I have 101 things to do to be ready to go. We also will be traveling home with more medical supplies including tons liquid. We need TSA to let me through again without too much hassle. Pray that we might get a whole row together on the way home and that we can fit all of our things in our bags as well. I am going home with A LOT more than I came with!
I know that's a lot to ask. Thank you all for the many prayers and words of encouragement. I'm so thankful for those who sent random gifts that have helped so much financially as well as the meals that kept my family fed. We appreciate the thoughtfulness of you all more than we can say.
The pictures below: the one with Tom was taken in the airport on the way out a month ago. The coffee one was done 2-3 weeks ago and the other one last week. The difference in my skin tone, premature aging, facial wrinkles and hair is amazing really. The clock has been turned back a little! People are saying how I look too young to have a 16 year old/5 kids again. Those comments had stopped the past two years as I have aged in appearance quickly. It may be hard to see in photos, but Jim is amazed when I send pictures since he doesn't see me everyday and that makes the changes more evident. People will accuse him of robbing the cradle again here pretty soon! :D
I can't wait to go home! Honestly, I don't miss Kansas. I just don't, at all. I do miss my husband and kids and church family....and my bed! It won't be long now...
"He that spared not his own Son, but delivered him up for us all, how shall he not with him also freely give us all things?" (Romans 8:32)
It stands to reason that He who has already done the most difficult, yea, infinitely difficult thing for us out of His great love, will continue to manifest that love to us, especially now that we are of His family. As our text tells us, He will "freely give us all things." With our best interests at heart, He will see that "all things work together for good for those who love the Lord." (Romans 8:28)
"What shall we then say to these things? If God be for us, who can be against us?" (Romans 8:31)
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