Wednesday, December 17, 2014

Because Sometimes an Illness is the Very Best Reason to Party -Unfolding the Story of Steve's Struggle With Lyme Disease


The week before Thanksgiving I (with the help of many generous souls) threw a dandy of a surprise party for my husband, Steve, in honor of his 40th birthday.

Throwing parties is not one of my gifts. Just thinking about it makes me sweat profusely with stress. But, with a lot of help, I mean a lot, we did it, and it was awesome! I wanted to take many more pics of the day we spent cooking and decorating in preparation for the festivities, but we were all running around like crazy trying to pull everything together, so I had very little time to get behind the lens.
Steve's sister, Jennifer, and her daughter Brianna worked their magic in the kitchen.  Bri is the baby-sitter extraordinaire.  Joey is in love with her.  Deep, deep love.
My friend, Susan, who happens to be the amazing mother of nine precious souls (so you know she has tons of free time) came to help me decorate for the party. She possesses the rare, yet precious, talent of figuring out how to unravel a mess of tangled balloons!

Both my mom and Steve's mom did SO MUCH to make all of the carefully thought out plans a reality.  They seriously moved at lightening speed, and I wish I had photo evidence of all their generosity and effort!
My goal was to keep the decorations masculine yet simple, but ya'll know that with Pinterest, anything that looks simple is never really simple. Ahem.
My mom was incredible during the weekend of the party. She was right beside me all weekend helping at home with the kids and the entire day during the set-up process being much more attentive to the little special details that I didn't have the time or energy to focus on.
Steve's mom generously gave me her time and assistance for two solid months making phone calls, digging up pictures, advising, watching kiddos, running errands. It was a gift to bring the event together for her son, whom we both love so much.  I was really touched that her entire family was able to be at the party!
Steve with two of his best college buddies from Farmhouse fraternity, Steve and Scott.

One of the most fun decorations we put together was a big 40 that we covered with photos from Steve's life from birth to present.  Watching guests gather around the pics to catch a glimpse of his life was such a treat.
A supremely talented friend from our parish agreed to make Steve's birthday cake.  She did an amazing job, didn't she?? She not only made the cake for Steve, she gave it to him as a gift!

Friends came from far and wide, and those who couldn't come sent loving messages and sincere wishes for fun - and fun did we have!
Our friend, Sara, came from out West and, let me tell you, she was the life of the party!
Stephi and Joe were my picture takers - without them this would be a pictureless post!

Over one hundred people came to celebrate with my guy.  He was truly touched by all of the sacrifices and efforts that so many people made in order to be there with him that night.
Our amazing friends, J.P. and Elizabeth traveled from KC for the party!
These two...oh, my gosh, these two!! They kept us on our toes all night, and we were so happy that they made the long drive to spend the evening (and early morning *eek!*) with us!
Several of Steve's fraternity brothers and their beautiful wives were able to make it to the party. We are so blessed to have been able to stay connected with them over the years since graduating from KSU. His brother, Scott, agreed to give a toast, and it was one that we will never forget.
There wasn't a dry eye in the room as Steve's dad also shared a toast. At least my eyes weren't dry, but that's because crying is something I'm really good at. I should be in a sad movie, because I can cry on cue.
Watching our parents dance together is such a supreme joy!
Annie Up = Most awesome party band evah!
We ate, drank and danced - yep, I hired a band, and they were crazy good! Steve and I have always loved to dance.  We secretly dream of being wedding crashers. (Did I just admit that??) Getting a wedding invite in the mail, especially if the wedding festivities include dancing, is like the supreme gift.  Hiring a band for the party was the easiest part of the surprise planning.
Joey was an absolute trooper. He enjoyed being passed around between the guests, adorned with hugs and smooches, and even twirled around on the dance floor a time or two!

So how did all this craziness come to be?? Last fall, when I realized Steve would be turning forty in December, I knew that I wanted to do something really special, not just because he would be reaching one of those landmark birthdays, but for reasons much bigger than that....

It was almost exactly one year ago when, on an ordinary afternoon of school and chores, I found my husband, whom I thought was in his office fielding business calls, on the bathroom floor completely overcome with uncontrollable anxiety. I immediately dropped to my knees, reaching out to wrap my arms around the broken man who fought desperately to hide his swollen tear-filled eyes behind the cover of calloused hands.

I had hoped and prayed that this day would never come.  Just six months earlier, Steve began experiencing sensations of numbness and tingling in his hands and occasionally his feet.  The symptoms were sporadic, so we both gave it little attention until one day he came home from work bothered by uncontrollable muscle twitches on the backs of his legs, and a disturbing inablity to concentrate or focus on daily tasks.

I'll never forget the look in his eyes as he explained to me how bothersome the twitching and foggy brain symptoms were.  It was a look of both worry and fear.  That day was the beginning of a long and arduous process of researching illnesses that might be associated with Steve's symptoms. Eventually, we narrowed the symptoms down to what we believed could be Multiple Sclerosis, ALS or Neurological Lyme Disease.

After weeks of appointments, phone calls, more research and tests, Steve was given the Lyme diagnosis.

The past few months have been filled with many ups and downs physically, mentally, and emotionally for my love.  At times it feels as though he is adjusting well to this new way of life, a life that requires Steve (and myself) to be much more attentive than before the diagnosis to his day-to-day habits that affect his health. Being attentive to a healthy diet, regular exercise, proper rest, remembering medications and supplements, tracking and journaling symptoms, and embracing the reality of physical limitations that were simply never there before has been an adjustment for everyone.

Once we put a treatment plan in place (last winter), Steve began to experience some relief from his symptoms, so we were very encouraged and felt as though we were on the right track with regards to his medical protocol.  Unfortunately, late last summer, some of Steve's symptoms began to escalate, and new ones popped up with a vengeance. He began experiencing terrible sensations of pulsating frequencies in his head, especially at night time, which often left him completely unable to sleep. Naturally, his ability to concentrate, to remember the names of friends and family, or even simple objects became terribly difficult.

He was exhausted and worried that these new symptoms the Lyme was presenting would not be remedied and could even get worse.  The worry was nearly consuming.  Nothing can prepare you, as a wife and mother, for the great amount of strength and fortitude required to truly care for a sick spouse, and manage the needs and lives of all the little ones too.

If you are reading this and have dedicated your life to caring for a sick child, spouse, parent or friend, I wish I could reach out and embrace you this very moment.  I offer you my deepest empathy. Words cannot possibly describe the weight that presses upon the care-taker's heart, and I know you understand what I am saying and feeling.

Steve's doctor, who was very concerned with his new set of symptoms, recommended that he begin testing for Multiple Sclerosis. Many of the symptoms that Lyme disease can present are similar to symptoms for M.S., Fibromyalgia, Parkinson's, ALS, and a number of other neurological diseases, which is why those very illnesses are often misdiagnosed.  The doctors believe a patient has M.S. or some other neurological disease, but he or she actually has Lyme disease.

The days of waiting for his testing to begin were filled with terrible anxiety for Steve.  He couldn't help but worry about what the future held for him as the provider and protector of our family.  To say that my heart was completely broken for him is an understatement.  I simply cannot explain the intensity of my desire to take away all of the pain and worry from him.

I've never prayed as hard as I did during those weeks when Steve was suffering most.  It's funny, but I've never been one to enjoy getting up at night with our babies for multiple feedings, but I am truly thankful that Joseph has been waking often in the night to nurse, because I want to be up, ready to help Steve in case he cannott sleep and, if nothing else, just to pray over him again and again and again.

When Steve's doctor encouraged him to begin testing for M.S., I knew right then and there, that I wanted to do something significant to celebrate his upcoming birthday.  At the present time, he still possessed a good amount of physical strength and mobility and was trying to carry on through the days as normal as possible.

I couldn't help but think that a year from now, the picture of life could look quite different than the present.  Would he be confined to bed or to a wheelchair?  Would it be necessary to send the boys to school so that I could dedicate myself to caring for Steve full time?

These were all frightening questions, yet very strong possibilities that we wrestled with day after day as we waited for Steve's test results.  During the wait, I decided to move forward with my idea to host a party.  I booked a band, locked in a great venue, and gathered Steve's family together to see if they would join me in the planning and execution of the event.

Just days after diving into the party plans, I received a call from a very emotional and relieved husband who called to share the wonderful news that the results of his M.S. tests were negative. I cannot tell you what an enormous relief this was to both of us!  Now the question was, what can we do to step up his treatment of the Lyme?

Everyday we are devoted to researching possibilities and opportunities for potential treatments of the disease. Steve's symptoms continue to change from week to week and their frequency and severity is often unpredictable, which makes understanding the disease a monumental task.

To watch someone you love so much, someone who has always been in perfect health, suffer so greatly is a mighty cross to bear.  And, yet, as I say that, I can also speak with complete confidence that Lyme disease is not something that has happened to Steve, but rather something that has happened for him.  Our crosses are often a gift, a mercy meant to bear a particular fruit in our lives if we are willing to offer ourselves unreservedly to the Father, trusting in his great plan and purpose.

We pray daily for Steve's healing, but we pray even more that he might be a docile and loving servant of the Lord, submitting himself freely to accept with humility the greatest good that can possibly come of all of this.  If it be healing than praise the Lord, and if it be to suffer the terrible pains of mind and body as well as the physical limitations that the Lyme brings, then Praise Him Still.

Looking back, I'm truly happy that I decided to surprise Steve on his 40th.  There's something so beautiful about friends and family coming together for a celebration.  I believe that celebrations can open our eyes to glimpses of heaven, the supreme eternal party, and that glimpse has the power to infuse a deeper sense of hope and encouragement into the heavy hearted, the broken body, the tired soul.

I know that's exactly what the surprise party did for Steve (and for me as well).

If you could be so kind as to keep Steve in your prayers, I will be eternally grateful.  We are thankful for your friendship and support, and promise to keep you posted on any new developments concerning Steve's condition.

21 comments:

  1. I love you both so much! Be assured of prayers everyday!!!!!

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  2. Dear Steve and Susan,
    We did not know of this and will certainly keep you all in our prayers. Please keep us up-dated. We consider the Husband family special friends and will join you in prayers for healing and peace.

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    1. Thank you for your kind words and prayers, Joanna!

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  3. what an amazing looking party, and we will be praying for you all.

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  4. Oh, Susan....I'm so sorry. I know how strong you are but I hope that you will let others help you, too as you continue to stay strong for Steve and your entire family.
    I am praying for Steve, for you and for all of your sweet boys!!!!
    And - that party looked like a complete success!!!

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    1. Deep down, I know that you are right, Kim...it's difficult to find a balance with life right now. I'm trying to take care of everyone, and taking care of myself feels selfish, but I know it's necessary. Thank you for your prayers!

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  5. Wow. Thank you for sharing this deeply personal story with us. I am so sad to hear about all your family has been through and will definitely keep all of you in my prayers.

    Too often lately I have been worrying or getting angry or upset over various challenging situations that have presented themselves. Instead of spending so much time fighting these situations, imagine if I had spent that time praying and trying to allow God to use it for good. It seems like that would be more productive. Thank you for setting an example for me that I might learn how to do this.

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  6. Susan, I am crying for you! I remember you asking for prayers for your husband; I am so sorry I never appreciated the weight of his and your cross. Thank you for sharing all these details with us.

    And the party! The party looked fabulous! I'm so happy for you guys.

    Prayers and hugs.

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  7. I will definitely pray for your husband. I have MS but luckily it has been in remission for the last year and a half. Prior to that I suffered from pain for ten long years. But the Lord is good and I am finally pain free!

    Your party looks beautiful (yet manly!) and I'm so glad you got to celebrate with family and friends!

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    1. Beth, I visit your blog often, and didn't realize you have MS. You are absolutely amazing!! How do you manage to care so beautifully for your family with the weight of the disease on your shoulders? Be assured of my prayers for you as well!!

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  8. I know so many people who have been affected by Lyme disease. It is so scary becaues it's so hard to diagnose and treat. Many prayers for your husband.

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  9. OH Susan, I am so sorry to hear about this. I know how devestating Lyme symptoms can be, I have two very good friends that have lyme. In fact, one of my friends Jen has come so far from the dark days at the beginning. If you are interested she has a blog called Predominantly Paleo. She believes she has gotten better from diet and is now thriving. She also has a FB page as well, if you ever wanted to reach out to someone who has gone through it. My thoughts and prayers are with you and your family. Hugs.

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    1. Thank you, Sue, for sharing this info. with me. I believe we're headed in a permanent direction toward Paleo, because it really does help keep the inflammation in the body at bay. I can't wait to read Jen's blog for tips and inspiration. Merry Christmas, sweet friend!

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  10. I'm so glad you went ahead with the party. It looks like you all had loads of fun.
    There are so many things I want to say, but I just can't put the words together. Just know that I am praying for both of you and your boys.

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  11. This was so beautiful. Thank you for sharing a glimpse of the immense weight you've been entrusted with. You and Steve are in my prayers.

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  12. Susan(and Steve),

    You are in our prayers. I/we can very much relate to what you are going through. Each situation has it's own details, but we have been suffering a very similar cross this year. We had the great blessing of building a new house together. for our beautiful family of 9, after living in a very old and truly falling apart mobile home until we could afford better. The new house is an incredible blessing. But, it seems to have brought an incredible cross with it, as well. My husband, oldest daughter, and myself have all suffered varying and often debilitating symptoms of reactions apparently to the chemicals used in building materials, cabinets, carpets, etc. Just like you said, the symptoms change, multiply, seem to get better, return with a vengeance, etc., etc., etc. From earaches, constant cold-symptoms, constant dizziness, nausea, shakes, headaches, etc. to finally to the most debilitating symptom of very bad anxiety attacks, it has been a roller coaster. The worst was the anxiety my husband and daughter had on top of the other symptoms. They couldn't leave the house to go even to church for 11 weeks. My poor husband has had the worst of it, we figure it must be because he was the one doing most of the building of the house, sawing, etc. breathing everything in all the time. This has been a very, very difficult year, but, by the grace of God a year of growth in many ways. A year to learn the depth and meaning behind offering up crosses(better to suffer these crosses than time in purgatory, right?), a year to truly live out "in sickness and in health".

    You will be in our daily prayers. And if I may ask it, can you guys pray for us that we may figure out exactly how to (hopefully) heal our family, if it be the will of God. We will bear this cross as long as God asks of us. But we do worry for our children that we finally come out of this, the youngest 6 of them are all 7 and under, so they need even more constant care and "damage control" than if they were older.

    Keep the Faith, keep your chin up, and God bless you all! We know well the difficult road you are on. You have a beautiful family!

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    1. Oh my, Sarah! Steve and I are both in tears right now just thinking of all of you and the terrible burdens you are enduring. Please be assured of our prayers for your entire family. God bless you!

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  13. Many prayers for you and your family! So much grace you have! Thank you for taking the time to share a part of your journey with us. I can't imagine how challenging this past year has been. Things that just make my heart hurt for you both, but the strength you both share is just beautiful and inspiring. God bless you all and so many hugs and prayers!

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  14. You and your husband will be in my prayers, Susan. Your faithful perspective on this cross is such a beautiful witness. May God bless you all!

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  15. Dear Susan, I'm so sorry to hear of all the suffering your husband Steve, and the rest of the family have had to endure. I will keep your husband in my prayers for God's healing, and continued strength and grace from HIM for you all!

    Beautiful pictures! You planned a lovely party--everyone seemed to have had a wonderful time!

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