"The people who survived the wars have found favor in the desert. The LORD appeared to me in a faraway place and said, “I love you with an everlasting love. So I will continue to show you my kindness. Once again I will build you up, and you will be rebuilt, my dear people Israel. Once again you will take your tambourines, and you will go dancing with happy people. Once again you will plant..."
-Jeremiah 31:2-5-
As I watched the calendar days slowly slip by and May fade into June I have to admit that I became a little apprehensive. These past few weeks have been incredibly difficult with pain, changes of meds, some reactions to new things, etc. that instead of the bravery I was feeling a couple of months ago with getting a port placed, I had instead emerged from May and approached June with a cautious fear. The verses above from Jeremiah 31:2-5 have brought great comfort to my heart. Truly the Lord appears to us in "faraway places" and in the desert times. And yet, I admit that I feel that my typical brave spirit was wounded.
And yet today and this month of June is upon us. Today that calls us to trust the Lord in new ways, to ask for mercy and grace, to once again pray through scripture for healing, and trust this day, like every other to the one who holds our future.
As I mentioned in my last Notes from the Porch update, these past several months since March 13th (when "Nic the PICC" developed a serious and life-threatening blood clot) have been intense, difficult, and have provided lots of changes to my fragile system. Since March 13th I have dealt with thirteen different medicine changes, added additional supplemental therapy that required us to travel over three hours several times a week to receive, started a new "mini-round of treatment" to prepare for the "Mort the Port" being placed (yes, that is the only name I could come up with so I am open for suggestions *smiles*), and have tried to take one day at a time. *smiles*
These weeks have been extremely intense. There are numerous shots, numerous IV therapies, new oral meds, and new supplements and new protocols that have truly taken my fragile body to the breaking point. To be frank I have spent a good half of the last several weeks in tears due to extreme pain and extreme nausea. I have spent a lot of my days praying and asking Jesus for mercy in these difficult moments and I am so so grateful for precious friends and loved ones who have been lifting me up in prayer as I stumble through this time. I have received so many sweet messages from people asking me how things are going and telling me that they are praying for me. You have no idea what a blessing that this has been to my little heart during these days of weeping.
So ... I continue to press forward with 13 more days of this treatment until we fly out to California on June 14th. I have an appointment on June 15th with the hematologist surgeon who will "officially" evaluate my case and then will give her recommendation on the best way to proceed. Some of you have asked if there is a chance that we will do another PICC line... at this point the answer would be "no". With the months that I have left in my suspected treatment rounds for my case of Lyme and the way that I can only handle a certain amount of drugs at one time (due to Mast Cell Disease) a port is a better long-term solution. Another factor that has brought us to this conclusion is that when "Nic the PICC" was originally placed we found out that it is impossible for me to have a line placed in my left arm and with the right arm developing a serious clot another line would most likely not be placed there (unless it was under extreme circumstances).
I would ask for continued prayers as I am not looking forward to this surgery and with this past month being so difficult ... I am kind of dreading it.
Thank you friends!
Some of you have gently and tactfully asked if this past year of living in a different state have been worth the upheaval and expense and if the decision was a good one. I appreciate your kindness in asking so gently and lovingly. As a sick person I often struggle with guilt at the long length of this journey, the cost of this journey, the fact that Lyme Disease is not a "quick fix" and the stress and inconvenience that this brings on everyone that knows me. I have expressed so many times how grateful I am for every one's sacrifice and love this year (you would NOT believe all that my parents have done to help and so much that my other family members have sacrificed in order for us to be here this year!!) and I continue to well up with tears at the love that has enveloped me in this journey.
I am grateful to say that the Lord has answered our prayers exceedingly beyond all that we could have asked or imagined after this past year. Here are just a few of the many beautiful blessings that the Lord has given:
(1) As I shared on instagram and facebook last week we received joyous news for the first time in seven years! Over the years I started to dread bloodwork as lots of things started to go from bad to worse, and continued to show "one more issue" after another as I was finally and accurately diagnosed with Advanced Late Stage Lyme Disease, Cancer and many other health issues. After years of searching for answers, years of slow and steady treatment with my fragile body, and lots of encouragement and prayers we have joyful news!! About 10 months ago my bloodwork started to slightly and slowly improve. About 5 months ago it started to stabilize. And then today... finally today ...we received the beautiful gift of for the first time in SEVEN years one very important area of my bloodwork is completely NORMAL!!
(2) Despite all of the medicine changes in the last several months and the fact that I have struggled, I have also never had to be hospitalized for any issue associated with this. For a gal who was going to the hospital emergency room 3-4 times a week just a couple of years ago this is a HUGE answer to prayer!
(3) There are NO new Cancer spots which is a blessing that we have cried many thankful tears over!
(4) In the past year my sleep, which is something that I was struggling with has returned almost to normal. At one point in this journey it was difficult for me to get more than 30 minutes at one time of sleep and now it is common for me to sleep 6-7 hours at one time.
(5) My joint pain which has been severe these past couple of years, has decreased amazingly.
(6) I have now been able to walk consistently (every.single.day) for a 1/2 of mile. This is HUGE as just a couple of years ago I couldn't even get out of bed without assistance and using a wheelchair. Last summer when I tried to start a walking program I eventually crashed. This year I started so SO slowly in October and for the past six months have added little bits every single week until we are at this point. My body has loved this and I am so incredibly grateful for this new addition to my healing journey.
(7) I have been able to return to 98% raw vegan. This one right here has been one of the HUGEST accomplishments and help in my healing journey. Before I got sick I chose to eat raw and vegan for a number of different health reasons but after I got sick and Lyme attacked my digestive system I could hardly eat at all. Being able to return to almost a normal diet for me has been an incredible blessing and is helping me heal!
(8) Being able to return to driving. This has been an incredible blessing that I didn't talk much about on the blog because it was painful but this past year I have been able to return to driving and it has been an incredible gift.
(9) Being able to travel alone, speak at a conference, and dream of the future. While I still have a LONG way to go till I am completely healed, the trip to Phoenix showed me how far the Lord has brought me this year and that we are truly moving forward in this healing journey. What an incredible blessing!
These are just a few of the things that I could share about this past year, but are nine of my favorites! *smiles* Thank you so much for your continued prayers. Here are the immediate prayer requests that we have:
(1) Prayers for peace as this trip to California approaches and for the placement of this port.
This is the next step. It's my next step... a step that will bring me closer to healing and closer to the end of this incredibly tough journey, but I would be lying if I would say that it is an easy step. Anyone who is having a port placed is obviously having it placed for serious reasons and the IV treatment is not a picnic. Hearing the details that are in front of me has left us all feeling quiet and sad, with a few tears.
(2) For relief of pain.
This mini-treatment round has caused a ton of pain (which is unfortunately normal) and I have been struggling a great deal. Please pray that the Lord relieves this pain as I face these remaining two weeks. It is quite intense and very uncomfortable.
(3) For soothing of my digestive system.
This mini-treatment round has caused a ton of stomach and digestive issues again (which is also unfortunately normal) and I would covet your prayers for this to be calm again.
(4) For Nausea to be relieved and my appetite to return
This mini-treatment round has caused a ton of issues with nausea and sickness and my apetitie has been completely wiped out. I am not going to go into details, but would appreciate prayers for this area.
(5) For Finances to Be Met for this Trip
I mentioned above the guilt that I feel as a sick gal needing to ask for prayer for this area and yet I know so many of you faithfully cover me in prayer so I do need prayer for this area.
This is the next step. It's my next step... a step that will bring me closer to healing and closer to the end of this incredibly tough journey, but I would be lying if I would say that it is an easy step. Anyone who is having a port placed is obviously having it placed for serious reasons and the IV treatment is not a picnic. Hearing the details that are in front of me has left us all feeling quiet and sad, with a few tears.
(2) For relief of pain.
This mini-treatment round has caused a ton of pain (which is unfortunately normal) and I have been struggling a great deal. Please pray that the Lord relieves this pain as I face these remaining two weeks. It is quite intense and very uncomfortable.
(3) For soothing of my digestive system.
This mini-treatment round has caused a ton of stomach and digestive issues again (which is also unfortunately normal) and I would covet your prayers for this to be calm again.
(4) For Nausea to be relieved and my appetite to return
This mini-treatment round has caused a ton of issues with nausea and sickness and my apetitie has been completely wiped out. I am not going to go into details, but would appreciate prayers for this area.
(5) For Finances to Be Met for this Trip
I mentioned above the guilt that I feel as a sick gal needing to ask for prayer for this area and yet I know so many of you faithfully cover me in prayer so I do need prayer for this area.
Due to a variety of factors (that I will not bore you with here) my mom (who needs to be with me for medical reasons) and I will be flying out and staying for nine days in California (June 14th- 23rd) and it will be an expensive trip. While we are there I will have the port placed and then will start the rounds of different IV medications in my doctors medical practice so that I can be carefully monitored in case of any reactions. As it was for the October trip, this trip is quite expensive and we would covet your prayers for all of the funds to be provided. If you are interested in financially donating you can find my "Go Fund Me Page" on the left side of the blog and I so appreciate your prayers as I humbly mention this need:
Here are the breakdown of costs for our California Trip:
Lyme Doctors Appointment, Nurses Instructions and Appointments, and IV First Round Meds (None of which are covered by insurance)- $800
2 Round Trip Airline Tickets - (approximately) -$1500
Hotel Stay (8 nights)- (approximately) - ($2500 but is now) $1500 (This number is reduced as we have been offered points by a generous friend and had some points saved up for our Hyatt Stay. THANK YOU THANK YOU THANK YOU to those who have donated your points for this!!)
Rental Car- $250
Food for the 9 day stay- (approximately)- $300
Total Cost- $4350
2 Round Trip Airline Tickets - (approximately) -$1500
Hotel Stay (8 nights)- (approximately) - ($2500 but is now) $1500 (This number is reduced as we have been offered points by a generous friend and had some points saved up for our Hyatt Stay. THANK YOU THANK YOU THANK YOU to those who have donated your points for this!!)
Rental Car- $250
Food for the 9 day stay- (approximately)- $300
Total Cost- $4350
Due to some generous donations earlier this year, orders from my shop, book sales, a few other things we have been able to do the total that I am now needing is:
Total Cost- $3000
Most of all thank you thank you thank you for your incredible love and prayers that continue to carry me through this journey. I am reminded by so many of you that we have a God who continues to meet us in faraway places. He is so incredibly good. Despite the hard, despite the pain, God's character never changes. Thank you for crying with me friends, rejoicing in the good, and all of your prayers that continue to help carry me each and everyday through the very difficult. You are a blessing that words can not describe,
With Love,
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