Thursday, January 5, 2017

Our Lady Undoer of Knots & Our Decision to Send Steve to Florida

When I started this blog a few years ago, the idealistic part of me assumed that it would be a place to share family stories, pics of our growing boys, favorite books and recipes, and maybe a tidbit here and there about homeschooling and farm life.

There's always something my mothering heart longs to write about, because writing has always been a special kind of joy, a therapy after long days of diaper changes and dish duty.

But, over the past couple of years, as the length of time between posts has widened from a few days, to a few weeks, to now a few months, I am accepting that the emptiness of this little virtual space may become something permanent, as the order of priority and charity in my heart for our family has far exceeded anything I've ever been called to in the past.

Many of you have been asking about Steve and his current situation concerning his health.  So, while the baby naps, I will attempt to piece together a somewhat coherent explanation of the latest happenings with him.

Three years ago, Steve was diagnosed with Lyme disease.  Early on, many of his symptoms pointed to a possibility of ALS and MS, but thankfully we were able to rule out those diseases as possible diagnoses.  Since I have already written about Steve's journey with Lyme and trichothecene infections up to this point (which you can read about here, herehere, and here if you are so inclined) I will not go into more detail, but will try to catch you up on where he is now.

Since his diagnosis, he has seen a number of doctors of different specialties who have attempted to rid his body of the Lyme bacteria (specifically borrelia burgdorferi and babesia) as well as the toxins from mold (trichothecenes) which have infected his body through his work with hay and wheat straw as well as from our home, which we discovered a year ago contained mold in a small area in our basement, but has since been remediated.

The infections and toxins in his body have compromised his immune and endocrine systems, which has made many of his symptoms worsen.  The specialists he has seen in hopes of building those symptoms back up have had little or no success with their prescribed treatments.

A year ago we heard about a clinic in Florida that specializes in treating Lyme disease, toxicity, and really every kind of illness imaginable.  At that time we seriously considered sending Steve south, but since the clinic would require a relocation for an undetermined amount of time, we decided to post pone it as an option because we were expecting our seventh child, and we didn't feel that it was a prudent option due to distance, separation from family and finances.

Instead we chose to exhaust all medical resources within close proximity, including the Hansa Center, which proved to be of minimal benefit to Steve.  After our son, Blaise, was born last May, Steve's symptoms, most of which are neurological in nature (severe headaches, pain behind the eyes, electrical frequencies in the brain at night which make it impossible to sleep) but also include muscle twitching, exhaustion, memory loss and an inability to concentrate, focus, or articulate his thoughts, began to worsen.
Papa snuggling with Blaise just days before his departure.

I could see and feel that he was becoming so discouraged, even depressed.  It took every ounce of energy and focus for him to keep our hay brokerage business and custom farming operations going, all the while he remained so devoted and present to our family, which brings me to tears just thinking about it.

Like most Lyme suffers, Steve looks pretty normal, and he has learned to cope with his symptoms so well, that people rarely realize just how sick he is.  When I visit with others who are in his same shoes, they also find that it's just easier to put on a smile and trudge through the day than to try to explain to others how debilitating the infection really is.

In early November I decided to pray a novena to Our Lady Undoer of Knots. I have sincere trust in her great desire to carry our deepest, dearest petitions to her Son. On the final day of the novena, Steve's symptoms were the worst I had ever seen. I can't describe how painful it is to see him suffer so much.  That night, I left for a couple of hours to attend a party, and when I came back we spent a long time talking about a webinar that he had watched which was presented by the head doctor of the Sponougle Wellness center, the clinic in Florida he had considered attending a year ago. The webinar just happened to be focused on Steve's very symptoms, specifically the ones affecting his brain.

At the end of our conversation, we both knew it was time for us to take a leap of faith and send Steve to Florida for treatment.  Thankfully, the clinic was able to accept him as a patient, but we didn't anticipate that it would all happen so soon - he would have to leave before Christmas.

On December 4th, Steve and I flew to Florida and immediately jumped in to meetings with doctors, nurses, and other staff at the clinic.  We also set up an apartment close to the clinic where he'll be staying for the duration of his treatments.

After over 40 blood tests, several UA's and a Pet Scan were reviewed, the doctors were able to pinpoint the causes of Steve's symptoms and put together a comprehensive treatment plan to heal his body of Lyme disease, trichothecenes, petrochemicals (from years of farm and mechanic work), blood parasites (which are carried by mosquitoes, ticks, and flies - more on that later), and a low functioning immune and endocrine system.

I returned home from Florida on December 8th, the feast of the Immaculate Conception.  When my flight landed in Kansas City, I received a text of this image from Steve with the message attached:

Stopped at a church on the way home from the airport to attend holy mass this morning.  
When I walked in, this image of Our Lady Undoer of Knots was the first thing I saw.  


I knew instantly that it was a confirmation of our prayers.

There's so much more to tell. I will try to write more in the coming days about Steve's treatment and also our family's trip to visit him in Florida over the Christmas holiday.

With all my heart I thank you for every single one of your prayers and sacrifices offered up for Steve, and for taking the time to reach out to us through texts, phone calls, and Facebook messages. Your love and friendship is sustaining us!

25 comments:

  1. Oh sweet Susan, God bless you and sustain you and Mary wrap you in her mantle. that picture he texted you made me cry. I will be praying for you, I had no idea (downside of social media pullback), and I am so thankful you have a team working with him who have concrete ideas and a plan!

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    1. I LOVE social media pull back! Don't ya miss the 90's?? Thank you for your prayers, Jenny. And, I want you to know that of the three blogs I continue to read, yours is one of them. Keep writing, my friend!

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  2. Susan, I am praying for y'all!! If you ever need a ride from the airport in KC please let me know!!! Owning my own business give allows me to set my own hours and I'm always good for a road trip!!

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    1. Thank you, KIM!! I will probably take you up on that offer one of these days. I've been thinking about you, wondering if you're still running, and also loved reading the post you shared on Chris' retirement. It was great!

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  3. So much love being sent your way!!!!!

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  4. This brings tears to my eyes! I have so long been a fan of your blog and your beautiful life! Prayers for you and your whole family. So glad God gave you such an amazing confirmation that this was where your husband was supposed to be!

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  5. Susan, I am so saddened and yet hopeful to hear Steve's plight. You are such an empathetic and strong wife. Is there anything your family needs right now, besides prayers? Can we set up a GoFundMe page or something to alleviate financial concerns? I want to help out a fellow mom of seven!!!

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    1. You are so thoughtful, Colleen! My sister-in-law set up a Meal Train online, so local people have kindly been bringing us meals, and also giving cash donations, which has been awesome help with covering some of Steve's meds and living expenses. Your prayers and virtual friendship may not seem like much, but are such a great help to me - I mean it!

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  6. I second Colleen's comments! Would love to help out your family. My mom has Lyme's very bad right now and cares for my disabled sister. It has been so hard to watch, and to feel so helpless. I love Our Lady of Knots and have prayed to her too about my mom and family hardships, and I love how you described your trust in her. Will keep your family in our prayers!

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    1. Hi Katie - I would love to pray for your mom, would you mind sharing her name with me? Lyme is SO overwhelming, my heart aches for her.

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  7. Prayers continue for you and your beautiful family, Susan. Thank you for being such a beautiful witness of a Christ-centered marriage. You are an amazing wife and mother - such an example for us all. May God bless you abundantly!

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  8. Susan, thank you for this update- your family will be in my prayers!!

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  9. Continued prayers for you at this time. I love Our Lady Undoer of Knots!

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  10. Oh Susan, I have been wondering about you & Steve. My heart goes out to you in a particular way. My little son (same age as Joey) had Lyme's last year. Thankfully we live very close to two clinics who erdicate many problems including Lyme's and were able to heal him. The clinics have helped so many people with Lyme & co-infections, including my Mom, sister, several cousins & friends. It's a hot bed for the disease here.
    I dearly hope you & your family (especially your hubby) find relief.
    Blessings!!

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    1. Hi Emily! I am so happy to hear that your son was able to receive help and healing. I think more people have Lyme disease than we realize, as it is often misdiagnosed as boing other illnesses/diseases. There are a few kiddos at the clinic where Steve is being treated, and they just break my heart. We must trust in God's mercy and pray for His wisdom in everything, including our health!

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  11. Susan, thanks for the update! I will be keeping all of you in my prayers-I can't imagine how difficult it must be to have him all the way in Florida, but I'm also so, so glad that Mary has been interceding and helping him!

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  12. Thinking of you, Susan. Thanks for sharing such a personal story - may it help others and may Steve heal completely!!

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  13. I will be praying for healing for your husband and for peace for you and the boys while he is away.

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  14. I think I told you this in a Facebook group (?) but my cousin spent time at the clinic in Tampa (5 months, with a return visit of 3 weeks later) and is so, so much better. Prayers for Steve’s healing, and your sanity holding it all together at home!

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    1. That is so encouraging! I'm praying that Steve does not have to stay for 5 months, but at this point, I'm in this for the long haul, so whatever God wants is what I want. Thanks for your prayers, and I'm so happy to hear that your cousin is feeling much better!

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  15. My heart goes out to all of you during this long, long trial. In our family the roles are reversed, and my husband had been watching me suffer. I pray for him daily- I cannot imagine how hard it is for the spouse to go through it. Your husband is not alone- others suffer and pray, and I believe our good and loving God hears us. I am just so, so sorry for all of you. The nervous system is not my friend right now either- I just prayed the undoer of knots prayer- thank you so much for sending that info out to those of us who did not know it! Hang in there and please keep us posted, and please let Steve know he has so many people cheering for him!

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