Remission Remission

Hello all,

For any of you keeping up with my Lyme journey, you might have noticed that it’s been quite a while since I’ve posted any updates (like, over a year!) There are a few reasons for that. The primary reason is that, since my last post, there hasn’t been too many changes to my health, so there hasn’t been anything to update on. The second, and probably the more positive reason of the two, is that my posts began as a therapeutic way for me to document the journey of my health crisis. With my health improving as much as it has, and as I am now back in school (almost full-time) and working again, I haven’t had very much time to spare.

I have reached a significant milestone in my journey with Lyme disease – as of February 14^th, my doctor has officially declared my Lyme to be in remission. What this means is that, though some amount of the borrelia bacteria will always remain in my body, it is no longer actively attacking my cells. So that’s positive news! I am also no longer taking any antibiotic medication, which also a nice break for my body.

As great as this news is, however, my fight with this disease is far from over. Though my disease is in remission, the damage done to my nervous system will take several years to recover. I continue to experience my Lyme symptoms on a regular basis – tremors, lightheadedness, weakness, brain fog, dizziness, vertigo – though, the idea is that their severity will lessen as time goes on.

In addition to this, the Lyme bacteria continues to remain in my bloodstream, meaning that I could relapse at any given time. This is most likely to occur when my body undergoes extreme amounts of physical stress, such as what is inflicted during pregnancy. And since Lyme resides in the bloodstream, there is high risk of passing the disease on to unborn children while they reside in the womb. For this reason, family planning has been and will continue to be a bit more complicated for Sam and I, and we are needing to proceed with these decisions with much greater thought and care than most couples ever need to consider.

And while my Lyme is now in remission, the Epstein-Barr co-infection that I contracted along with it is still actively attacking my body. I am still taking medication to help fight off this virus, as well as many supplements to assist in my healing process.

There is still much I must travel along this journey with Lyme. And to some degree or another, it will likely impact me my entire life. But I have and will continue progressing towards a healthier Kenna, and for that I owe all the thanks that I can possess. The Lord has been so good to me during this trying time. I have come closer to him through this experience in a way that I do not think I could have beforehand. I have learned that it is through the good times, as well as the bad, that the beauty of life is realized. And for that, I am forever thankful.

Thanks to all of you who have shown support and concern over the years. I never get tired of hearing someone asking how my health is doing. Really, it means the world to me to know that, even though this trial has been going on for so long, there are still people out there who remember that I am struggling and who stop to check in on me. Your thoughtfulness does more than you could ever know.

Your healing friend,

Kenna

P.S. - Random, but I wanted to add a photo to this post only to realize that it's been MONTHS since Sam and I have taken a picture together. Definitely need to do better at that... In the mean time, here's a selfie of us of what we look like right now on our couch snuggling and watching LOTR. Look at this sweet guy! No matter what my health is like, with this man by my side, my life is always really great. :)

Managing Life with Lyme

Hello my dear friends!

I do think it is safe to say that I am not so good at this whole blogging thing. My health updates have been very few and far between, yet I suppose part of the reason is that there isn't much to update. When I began this health journey, I thought that it would be a quick and easy fix - everything else had been my entire life. Lyme disease has not been the case. In fact, it is a disease that, to some degree or another, I will deal with the rest of my mortal life. I suppose that's why it is referred to as a chronic illness. Though getting better, I still experience symptoms most days, and am sick and tired everyday. The key now (and, I suppose, forever) is learning how to manage it, which is something that I feel that Sam and I both have made significant progress with.

I started a new semester today taking 3 classes, 9 credits in total, which is one step up from what I've done this last semester. In addition, I am continuing work as a TA for BYU's American Heritage course, which I absolutely love. I drive with a handicapped parking tag, have accommodations with the University Accessibility Center, and carry a collapsible cane in my school bag with me so that, even if I am sick and my leg starts giving out, I can still get myself to where I need to be. I still am not cleared for strenuous exercise, which is a bummer, but Sam and I have worked out an arrangement where we will go to the gym together for Sam to run on a treadmill while I walk on one, after which we both do strength training. Exercise is something we would do together regularly before I got sick, so even though it's not exactly the same, it's so fun that I am finally well enough for us to resume one of our favorite couple activities.

I absolutely must give myself eight hours of sleep each night, at the very least, and go to bed no later than 10pm. I must eat healthy meals on a regularly basis and have plenty of snacks on my person anytime we go out somewhere longer than an hour. I must be on top of taking all the many medicine I'm prescribed and drink plenty of water each day. I swear, it feels as though I am a old lady already, but it's just how one with such a temperamental condition such as mine must live their life. Any matter of stress - physical, mental, or emotional - can cause my symptoms to act out and for my whole body to go out of whack. It's taken quite a while to get use to, but I think Sam and I have finally figured out the things that trigger my symptoms and learned how to avoid them from happening, and if they do happen, how to take care of me.

Probably one of the things I personally feel is most difficult with this disease is how unreliable it makes me. Integrity has always been a characteristic I highly value and though I want to follow through with all the plans or assignments I commit to, I sometimes can't, and that makes me feel so awful. I want people to be able to trust and rely on me, but how can they when I don't know how my health will be at any given time? It's a rare day when I can make it through all three hours of church, and I've had to cancel plans and postpone responsibilities far too many times than I ever wish to admit. I have the determination and drive to accomplish all the things I'm asked to, yet sometimes I can't due to the physical limitations before me. And that's frustrating.

For better or worse, I am grateful in this instance that God will not only judge us by our actions, but also by the desires of our hearts. I take great comfort in knowing that all I am asked to do is my best, and that my dear Savior, through His infinite atoning sacrifice, makes up all the areas where I lack. One day I'll be able to run and stay through all of church and live up to every commitment I make and work as hard as ever again; but today is not that day. Until then, I rejoice in the name of my God and his countless love and mercy that he bestows upon me every day - in my good times, and in my bad. He truly is the Messiah, the Living Christ, the Great Emanuel, the Good Shepard, the Prince of Peace. Let us all take a moment to rejoice in His great name and in the name of our merciful father who sent him. Take a moment to think of all the wondrous blessings they so freely bestows upon you and me every day, and let us be truly thankful to them. Even when things are hard, there is always an infinite amount to be grateful for.

Your blessed friend,

Makenna

Busy Again

Hi there everyone!

I suppose that it's that time again - time to write another update on how I've been doing. Things have been B.U.S.Y. lately and a lot of exciting things have happened since my last post.

First and foremost - we are back in Utah! Moving to Washington for the summer was an inspired decision and a much needed break, but it is oh so nice to be back in Provo; we definitely feel that this is where we fit in and belong. Not only am I taking a few classes this semester, but for the first time in over a year I am a working woman again! I've been prepping and working from home all summer long, but this last week was my first dressing up and coming in for work as a Teaching Assistant for BYU's American Heritage course. I cannot even begin to express how much I love this job! I am so passionate about this subject material and just the fact that I am busy and have a schedule again fills me with so much joy! Other exciting news is that my awesome, hardworking, talented husband made it through the first round of application into the Industrial Design program. Only 40 people make it pass the first cut, and he was one of them! He now gets to take a set of design courses next semester and turn in a portfolio, where they will then take the top 15 students into the program. It is very competitive, but if you follow Sam's Instagram account, you can see a glimpse of how hard he is working to make it in. I am very proud of him and have every confidence that he's going to achieve his dream.

                       (Me teaching my first lab! Sam insisted we take a picture.)


As great as it has been to be busy again, I am worried about the toll it's taking on my health. Being a working student requires a lot of physical and mental energy. I some how have been able to plow through this week without too much retaliation from my Lyme, but come the weekend I totally crashed. I'm worried that one weekend won't be long enough to recover for another busy week. Too much strain on my body can slow progress or even reverse it, so I do need to be extremely careful with how I proceed through this semester. Accounting for all my medical bills and the fact that I've been too sick to work for the past 15 months, things are quite a stretch right now to make ends meet. So even if it's too much of a burden for my body to be working and going to school right now, I don't really feel like I have a choice. We literally cannot afford anymore for me not to work, and I have to be taking at least 6 credits to keep my job, so we do what we need to do. Even though things are tight, we make it through alright because we pay our tithing, donate fast offerings, and communicate a lot about our budget and how to spend what we have. The Lord is good though and is watching out for us, so we make it through.  

I sometimes get discouraged with how slowly I am progressing through school. I dread the question "how much longer do you have until you graduate?" because I honestly have no idea. Technically I'm a junior, so I should have two more years left, but with my health being as it is, it's going to take me much longer. Life is hard sometimes, but that doesn't have to stop me from being happy! I am so full of gratitude that God has blessed me with enough health to return to school and work at all, even though I have to take it slow. I have a husband to love and a God to praise - that's really all I need.

If you take anything away from this reading, remember to be happy. No matter your situation, there is always something you can smile about. God is good and has given us everything! The mere fact that we have air to breathe is attributed to him and his love for us. So smile, be happy, and live with a heart full of gratitude for him whom all good comes. Thank you for all the continuous love and support!

Much love,
Makenna

Improvement!

Hey everyone!

Sorry that it's been a while. As my last post explained, Sam and I are temporally living with my parents here in Vancouver, WA so that we can have some extra help with my health; we've been here for about six weeks now. In all honesty, Sam and I were a little weary about coming out here. As great as our parent's are, it's never grown children's ideal to move back in with their parents. Although it has been a little difficult, overall it has been a HUGE blessing. We are incredibly grateful to my parent's for their hospitality and for doing such a great job at taking care of us. The emotional load we have been bearing on our own for this past year has been relieved substantially. We literally feel a weight lifted off our shoulders.

What's better, since moving here we've noticed substantial improvements in my health. Hoo-rah! I suppose the massive stress reduction did more good than we thought it would! I haven't had a seizure in months; dizziness and falling over have basically stopped altogether;  and even the tremors have occurred less and less over the past few weeks. I still get debilitatingly tired with ridiculous ease and need a lot more rest than a normal person, and concentrating is still difficult at times, but everything is  so much, much better than it use to be. I finally feel like I am becoming my normal self again, which is such a joyous thing to behold.
 
I had an appointment with my Lyme doctor the other week. I have reached a plateau in my progress. The Lyme bacteria originates in the blood stream, but can sneak its way into other parts of my body. Up to this point, my treatment has been focusing on getting rid of all the easy-to-kill bacteria that is directly in my bloodstream, and it has succeeded! But now the challenge is to get my immune system into those crevices of my body where the Lyme bacteria is hiding and kill those tricky guys off. So we have moved on to the next phase of my treatment - pulsing. With this technique I take a larger dosage of the antibiotics all at once, and then lay off for a few days, then take a large dosage, and back off again, alternating back and forth. The idea is that this will give a big rush of the medicine into my body and give my antibodies the extra kick they need to find and fight off the Lyme. The good news about this is that it means that I am getting better! The bad news is that, as always, when I switch up my medication, it makes me pretty sick for a while before it makes me better.
 
 
Some other news:
 

 
 
As many of you have probably seen via social media, my husband ran the Newport Half and my parents ran the Newport Marathon the other week. Something you might not know though is that I was actually signed up to run the half marathon as well. Sam and I signed up last September to run it, but I was later instructed my doctor not to exercise anymore and couldn't do it. Honestly, this made me SUPER BUMMED! Especially come race time when there's the excitement of all the people gathering together, getting their numbers, lining up to run - the whole thrill of it. Running has always been a coping mechanism for stress and an activity I've always enjoyed. Plus, not being able to exercise at all this past year has made me put on the pounds, which doesn't help with my already low self-esteem from not being able to do anything this past year. But even though I couldn't run it, it touched me that my family made shirts and ran in honor of me. And with May being Lyme Disease Awareness Month, it really meant a lot to me. Even though I wasn't strong enough to run this time, I know I will get better, shave off the weight I've gained, and be able to run again someday.

 
Thanks again for the love and support. I really don't think you know how much it means to me.
 
Your Sick Friend,
Makenna

We're Moving Out of Provo

Hi everyone,

Many of you already have been informed, but in case if you haven't heard, Sam and I have moved to Vancouver, Washington.

Surprised, are you? Well, you are not alone. In all honesty, it was quite a surprise to us as well. It's only been a week since we first had the thought that we needed to move.

It is an incredible blessing to finally have a diagnosis, and although I am on the right path, the road to recovery is a lot longer and rockier than I anticipated it would be. I'm finishing up with my third month of Lyme treatment, and as we have noticed improvements in my health, overall I am still very sick. With the semester finished up, Sam will be going back to work full time, leaving me home alone for 8-10 hours a day. On good days, that's not a problem. On my bad days, however, that doesn't work so well. There are sometimes where I am so shaky and fatigued that I can't walk or even stand on my own without falling over. Being home alone all day for weeks on end when I'm like that isn't very healthy -  neither physically or emotionally.

Although the decision was made quick, we just felt very strongly of what we needed to do - we needed to move to Washington for a while to be closer to family while we get this whole Lyme disease thing under control. We made the arrangements on Monday, had our apartment packed up by Tuesday, drove half-way to Boise on Wednesday, and pulled in to my parent's driveway by 6:00 Thursday evening.

So anyways, that's what's happening. It was really difficult to up and leave our home in Provo, but we know that this is the best thing for us. Until we get my disease more under control, we'll need some more support from family Hopefully we'll be back to our regular college-life routine in no time. Until then, we're just grateful for where we are now and praying that our God will direct us where he wants us to go.


- Makenna

It's Official!

Greetings everyone!

I have learned something recently that I am sure all of you have picked up as well - I'm really not so good at this whole blogging thing. I apologize for falling behind on my updates!

Well, I've got some big news - as of March 18th, I officially have been diagnosed with Lyme disease. And this is no April Fools joke, this is the real deal. YAY!!! Well, I  mean, not yay - it actually really sucks to have Lyme. But I cannot express how incredibly relieving it is to finally have a diagnosis and to know what the heck is wrong with me. All this began June 14, 2014, which means we have spent a little over 9 months in the dark, seeing doctor after doctor only for them to say that they don't know what's wrong. Although the road to recovery is a long one, I'm so grateful to have finally found the right road.

Even though 9 months seems like a long time, it's really nothing compared to what so many others go through. Because Lyme is still so new in the medical world, there are people infected with it who go years before they are properly diagnosed, which is so awful knowing that the longer one goes without treatment, the worse the disease becomes. I'd like to give a big shout out to my dear friend Craig Blair. He's the one who informed my mom about Lyme disease (who then informed me about it) and suggested that I get it checked out. If it weren't for him, only the Lord knows how much longer I would be searching for this diagnosis.

Now, I'm sure some of you are wondering what all the long road to recovery entails. Lyme disease is something that I will have for the rest of my life. The goal right now is to get the disease in remission, then worry about handling flare ups of the disease once I get to that bridge. It's too soon to know exactly how much longer it will take for my Lyme to be in remission. However, my doctor was optimistic about me being well enough to start school and work and maybe even strong enough to start exercising again come this fall (something which I have been banned from doing for the time being).

In the mean time, though, the most important thing for me to do is to rest, which sounds easy enough, but at least for me, it is the hardest thing I've ever had to do! I love being busy. I went from cramming my schedule to the absolute limit to having all the time in world with nothing to fill it all with. I haven't been able to work and I barely was able to handle six credits this past semester. And during my herx weeks, I'm so sick  and tired that I can't even get out of bed without help. Needless to say, I sometimes am bored out of my mind. Any recommendations of good books or activities to fill my time would be much appreciated (Seriously, please.)

The way I had always approached illness up to this point is that if I just shrug it off and push through it, it will eventually go away. I never let a little sickness get me down. Well, unfortunately, that is the exact opposite way I need to handle Lyme. If I don't give my body the time it needs to recover, I won't. I'll just stay sick. So although it is killing me to do nothing but rest, my good husband always reminds me that this is the treatment, this is how I'm going to beat this. So let this be a lesson to all you people out there reading this - take good care of your body. It's the only one you get, and as Jeffrey R. Holland, a man I know to be a apostle of the Lord, recently stated, "If we do not take time to be well, we most assuredly will take time later on to be ill".

Well, that's about all I got for today. I love you all so very much! Your love and concern really means the world to me and I am so incredibly blessed to have such an abundance of friends who are looking out for me.


Until next time,

Makenna

Herx da Herx

Hello my dear loved ones!

Today I would like to talk about an element of my disease called the herx reaction (which is a fun word to say - sounds like something that could be from a Harry Potter book).

As I explained in previous posts, the Borrelia bacteria that is the cause of Lyme disease only replicates every three weeks. When it does, it triggers my immune system to fight back. The Lyme bacteria tries to hide in my other cells, causing my immune system to attack itself and release neurotoxins to kill it off. I like to picture it as an epic battle going on in my body - with my anti-bodies and the borrelia bacteria each attacking one another. And, just like any battle, both the home team and the enemy face casualties and losses. Although it's ultimately a good thing that my body is fighting the disease so forcefully, it inevitably results in me getting a lot more sick before I get better. This is what the herx reaction is - the period of time where my body reacts to the battle going on and my symptoms get a whole lot worse.

Since I've only just barely started treatment, my hurx reactions usually last about two weeks. And since the bacteria replicates every three weeks, I basically have two weeks of really extreme herxing, and one week where I more-or-less feel normal. Repeat. And it's not necessarily entire days that are good or bad - it's more like hours in the day that are good and bad. It's unpredictable - I just have to roll with however I'm feeling in the moment. If I am fortunate to be feeling well, I know I need to savor the moment, because there's no guarantee how long it will last before I just collapse over with illness.

The good news is that the longer I undergo treatment, the less time my herx reactions will last. In a few months, hopefully I'll go to only one week of hurxing, and then two weeks of feeling well, and then half a week, until eventually I only have one bad day every three weeks. Now, many of you have asked me how long will this take? How long will I have to undergo treatment til I am basically normal again? The answer is unclear for the moment. It's too early to tell. The best situations take only three months - the worse take about two years. Although we are unsure for the time being, I imagine it will take at least another six months to a year for my disease to fully be in remission.

...

I try to stay strong through all of this, but sometimes it is too much to handle. Sometimes I feel so overwhelmed and burdened that I just feel broken and lost. The Lord promises that if we draw near unto him, He will draw near unto us (D&C 88:63). I try my hardest to keep his commandments and to do his will, yet so often when I feel I need him most, he is not there. In these moments of despair, my heart yearns for his companionship and the comfort of his love, and I think to myself, "Why, Lord? Why have you forgotten me?"

I had the opportunity to meet with my Bishop the other week and I shared with him this concern. He responded with an answer that comforted me so much. He shared the story of Christ found in John 21:3-6. Some of the Christ's disciples were out fishing. They struggled all night long with no success. It wasn't until morning that Christ showed himself unto them and blessed them with such a multitude of fish that they weren't able to draw them all in. It's not the Christ had abandon his friends or forgotten them, but sometimes we need to struggle before he can come to our aid. We want our God to be a first watch God, but in reality he is a a third watch God, knowing that there are vital lessons we need to learn in our struggle before he comes in and takes them all away.

A favorite quote of mine then came to my mind - "God does notice us, and he watches over us. But it is usually through another person that he meets our needs" (Spencer W. Kimball). I know this is true, because the very day that I had this discussion with my Bishop, I was visited by my lovely friends in the Relief Society presidency who talked with me and made arrangements for meals to be made for me. Right after they left, Sam's cousin stopped by to visit bearing a "Lyme Care Packages" from his family back in Idaho. And these instances are so plentiful. Sam and I both have so many good friends who constantly call and check on us, come over to visit us, make us meals, or those who are farther away send thoughtful cards. I have come to realize that a God who has put such wonderful, caring people in my life is a God who truly is mindful of me and is reaching out to comfort me.

So thank you to all you who are reading this. All the love and service you provide is an answer to my prayers, and you are truly angels sent from my loving God to be with me during this difficult time. God bless you all! And seriously, if you ever need me to return the favor, please don't hesitate to ask.

With much love,

Makenna