(Pictures in this post taken from a car ride in January)
Happy Friday Friends! I hope that this finds you doing well. First, I want to apologize for my lack of regular posting regarding my health I have received so many kind emails asking about various things and I do apologize that it hasn't been more consistent. It is crazy how the days are so filled with a million different things (you can read my current daily routine here) and the days seem to pass so slowly until I realize it has been weeks without an update. I do apologize. I treasure and covet your prayers and I will try to update more consistently. Thank you so much for your understanding and support!
Second, if we are connected on instagram or Facebook you know that this week was filled with celebration as I reached a HUGE milestone on this journey. On Monday, we celebrated ONE year since my last ER hospital trip, last anaphylactic reaction, and one year since having to receive unplanned emergency room/hospital care! This is a HUGE answer to prayer and something that I thought a year ago as I started with a new medical team would never be possible!! It is also the first time in 7 and 1/2 years since contracting Lyme Disease that I have not had to go the hospital, have surgery, visit the ER for "strange and weird symptoms", or have a hospital stay due to "one more" infection. The only time that I have visited the hospital this year has been for planned visits. It is still something that as I write this I am overwhelmed with tears about. HOW gracious of the Lord to give this gift!! THANK YOU for rejoicing with me and for all of your prayers! TRULY the Lord is answering! "Oh the joys of those who trust the Lord!" (Psalms)
If you remember from the last Notes on the Porch Update, my doctor put me back on one of the drugs that I was on last summer. I mentioned that the first few days were difficult with this round of treatment. To be frank, it still is. This drug wipes me out (with the little energy that I have), makes me incredibly sick, and gives me a very nasty headache. The flip side is that it is killing a bunch of the Lyme and so my strong-willed nature is actually a blessing in this instance. *smiles* One of the prayer requests that I have is that these side effects will minimize so that I can stay on this particular drug (at the full dose) for at least another month. Currently I am at week 8 (as of today) and really would love to get 12 weeks out of this. Your prayers are so appreciated for this!
Another component that I mentioned in my last update was that my doctor was putting me on a specific herb to help me with Lyme cysts that have been causing me a ton of issues. I am so thankful to share that I started that herb and am already at 1/2 of the full dosage! This is a HUGE step forward as typically it would take me 6 months to get to this kind of marker! Please pray as I continue to work to get to the full dosage that this will help!
One of the prayer requests last time was that the decision was made to add a very expensive (even with insurance) medication into the treatment plan on top of the other medications that I am on. If you remember I mentioned this drug was $3,000 a month. THANKFULLY, a huge answer to prayer is that the assistance that I asked you to pray for DID come through for at least one month. I will be starting this particular medication on Monday and as always covet your prayers for no serious reactions.
I have a very neat story to share that brings me to tears. Sometimes in this journey the Lord is so good to show how He has been working behind the scenes. As many of you know, I had been prayerfully and diligently walking through the disability assistance route for about two years now. As y'all know I was "finally" rejected after my second appeal in the fall. I was honestly devastated. I had hoped and prayed that this would be a way to help with the extreme financial costs of this journey. When I was denied I was so confused at why the Lord would allow that to happen. I knew that I wouldn't be able to receive much (I had been told that I might be able to receive $100 at the most each month, but most likely $75) but EVERY single penny is a HUGE thing on this journey so I was hopeful! When I was rejected I just cried out to the Lord asking Him why He had allowed this. Well this past month I have learned two important answers. First, the pharmaceutical company that gives the assistance for this particular medication asks if you are receiving disability assistance. If you are, you are rejected. Because I am not receiving assistance I was able to receive this amazing gift. I cried. The difference between $75 and $3000 is HUGE and the Lord already knew that. Second, a huge thing that has been hanging on my head has been my student loans that I am currently still paying off. When I made the difficult decision to take time off of finishing my second masters degree this year, my payment for my loans were going back into affect in January. There was absolutely no way I would be able to make any payment on them. Again, I found out that I am allowed a temporary deferment for the loans due to my health situation and the fact that I am not on disability. Had I been on disability that money would have to go right into the student loans. I shake my head and marvel at how the Lord is watching over every single detail on this journey, even the ones that are in the future and I don't know about.
I had my scheduled phone consultation with my doctor last week. What a blessing that entire medical team is to my life. I cried as I shared what a blessing this past year has been. This journey is long, there are days of tears and frustration, but to see where the Lord has brought me in this journey from a year ago till now humbles my little heart. We are continuing on the things that I mentioned above and have added in a couple of more supplements/herbs and medications.
I would ask for prayers for my upcoming required trip out to the office in California in March. There are two main prayer requests: (1) Due to finances I travel alone to these appointments and they take a lot out of me. I am sure you can imagine how much energy it takes and to be frank as a seriously ill person it can be a little nerve-wracking to travel across the country by yourself. (2) Would you please pray for the financial resources to come in for this trip? I am so grateful for the donations that come in and to those of you who ask how you can financially contribute. My "Go Fund Me Page" is on the left on this website and that is the best way! Thank you.
I appreciate all of your prayers for this journey. To be honest, it is not a lot of fun. *smiles* The other day I was moaning and complaining to the Lord and saying, "hasn't there been enough pain?" "hasn't there been enough sickness?" "haven't I endured enough on this journey?" And the Lord quietly replied, "My child, I love you. When you pass through the waters I will be with you; and through the rivers, they shall not overflow you; when you walk through the fire, you shall not be burned, neither shall the flame scorch you." (Isaiah 43:1) I am humbled by the Lord's love that so graciously puts up with my complaining. How great His love is for His children. BUT... even in the midst of this I have been dealing with some silent grief behind the scenes. Recently I have felt such a tug-of-war about wishing that I was back in the classroom teaching instead of being forced to spend my days primarily in bed. I have cried many tears about wishing that I was back being "useful" to the Lord. If you know me at all then you know that my biggest dream is to be married and to be a mama. I have wanted that since I was 6 years old. *smiles* But as I spent my single years teaching, I felt that I was following the Lord's calling. I loved my teaching days. The Lord was so good in letting me spend my days pouring out His love to students. I haven't talked about it much on this blog but it has been a death ... a relinquishing of that dream in this journey. There have been many tears that have been spent on this and the knowledge that I may never go back into the classroom. Many more tears wondering if my greatest dreams of being married and being a mama will come true. Even writing those words and reading them is difficult as I surrender to the Lord.
But I was reading something the other day by Robin Jones Gunn that the Lord used to tenderly wrap my little broken heart in His love. If you are struggling through the weight of broken dreams and shattered plans, I pray it encourages you as it has encouraged me:
"Have you ever counted how many of your dreams were dropped and shattered into pieces? It's not a good exercise for your spirit on most days. On some days, like today, you might wake up and discover that the broken pieces of your dreams have become something complex and beautiful. Their irregular edges had to be reshaped through the breaking in order for them to fit perfectly with other pieces in your life. You are a stained glass window in the making. And so am I. (The) mysterious handiwork of God is so beautiful and complex that when His light shines through the fragments of my many shattered wishes, I see Him. I see His glory. I am a stained glass window. And so are you. May you see the beauty today that God is crafting from your shattered dreams."
God is crafting a beautiful story from our shattered dreams friends that only He can see. Sometimes, like I shared about the rejection of disability assistance, we can see these workings quickly and sometimes like many questions and life's trials we may not see until Heaven. Either way, He is good and working and in the fragments of my many shattered wishes and dreams I see Him and His glory. Hold fast to this beautiful truth today!
"Wrong will be right, when Aslan comes in sight, at the sound of his roar, sorrows will be no more, when he bares his teeth, winter meets its death, and when he shakes his mane, we shall have spring again."
-CS Lewis, The Lion, The Witch and the Wardrobe-