Brave

Dreams... It's important to keep dreaming, my Dad told me recently over the phone as I gave him a list of things I'd like to eventually do when I am feeling better. I've had a few good days this week and it's been a nice reprieve from constant pain and misery. But no matter how good, I still feel prisoner to my body. I spend endless hours dreaming of the day I will be able to run, play soccer with my little boy, ride bikes with my little family, go rock climbing with my husband, finally learn to snowboard and love it! I dream about breaking free from the chains and weight that hold me down EVERY SINGLE DAY! So today when I was able to do 10 minutes of a very watered down version of zumba in my basement, I cheered. But then I yearned for more, I wanted so badly to hop on the treadmill and run, only I knew I can't right now. So my moment of excitement turned into another moment of feeling imprisoned once again. But I have dreams, and because of that, I will keep trying and keep going.

One day I will walk a 5k (hopefully sooner than later!), and then one day I will run a 5k wearing a shirt that proudly states that I am a Lyme Disease Warrior. I am proud to state that. So I will keep fighting everyday, no matter what may come.

And those that know me, know I LOVE music, so heres a favorite right now:

                                                                  "Brave"
                                                           By Josh Groban

Wake up, wake up, the sun cannot wait for long
Reach out, reach out before it fades away
You will find the warmth when you surrender
Smile into the fear and let it play

You wanna run away, run away
And you say that it can't be so
You wanna look away, look away
But you stay 'cause it's all so close
When you stand up and hold out your hand
In the face what I don't understand
My reason to be brave

Hold on, hold on so strong, time just carries on
All that you thought was wrong is pure again
You can't hide forever from the thunder
Look into the storm and feel the rain

You wanna run away, run away
And you say that it can't be so
You wanna look away, look away
But you stay 'cause it's all so close
When you stand up and hold out your hand
In the face what I don't understand
My reason to be brave

Go on, go on

You wanna run away run away
And you say that it can't be so
You wanna look away look away
But you stay 'cause it's all so close
When you stand up and hold out your hand
In the face what I don't understand
My reason to be brave

So all of you out there struggling with your own trials, hold on to your dreams, be brave and just keep going, one small step at a time. Till next time...

The Refiner's Fire

Today while sitting in Church, a friend shared a story that I'd like to reshare because it hit home so deeply for me. This story was shared in a talk by Linda S. Reeves called "Claim the Blessings of your covenants" http://www.lds.org/broadcasts/article/general-relief-society-meeting/2013/09/claim-the-blessings-of-your-covenants?lang=eng&query=provo+tabernacle+fire

"Almost three years ago a devastating fire gutted the interior of the beloved, historic tabernacle in Provo, Utah. Its loss was deemed a great tragedy by both the community and Church members. Many wondered, “Why did the Lord let this happen? Surely He could have prevented the fire or stopped its destruction.”

Ten months later, during the October 2011 general conference, there was an audible gasp when President Thomas S. Monson announced that the nearly destroyed tabernacle was to become a holy temple—a house of the Lord! Suddenly we could see what the Lord had always known! He didn’t cause the fire, but He allowed the fire to strip away the interior. He saw the tabernacle as a magnificent temple—a permanent home for making sacred, eternal covenants.

My dear sisters, the Lord allows us to be tried and tested, sometimes to our maximum capacity. We have seen the lives of loved ones—and maybe our own—figuratively burned to the ground and have wondered why a loving and caring Heavenly Father would allow such things to happen. But He does not leave us in the ashes; He stands with open arms, eagerly inviting us to come to Him. He is building our lives into magnificent temples where His Spirit can dwell eternally."

Provo Tabernacle Fire 2010
Provo, Utah

The only thing standing was the exterior walls

Beginning to build the new temple using the old exterior walls

It will look even more beautiful like this when finished

My friend went on to say that sometimes when we are in the midst of trials it is easy to cry out to our Heavenly Father "why Lord? why me? why have you burned me?" If we look at ourselves as a temple, the Lord is refining us, and we do go through a refiners fire making us better, stronger, more prepared for what is to come. But you can also learn from this story that he see's further than we can see in our own lives. He knows what is best for us.

So today, when I feel gutted out inside from a bad week of suffering from excruciating pain, feeling low in spirit, and in body, it was a beautiful reminder that no matter how hard things get, the Lord is there with out stretched arms. 

If I were an artist, I would paint a picture depicting how I feel. I would paint a girl sitting at the steps of a burned building, her clothes tattered, torn, and soot on her face. In the corner, I would paint a beautiful depiction of the Savior with outstretched arms, reaching and bidding this girl who is tattered, torn, bruised, exhausted, and defeated to come into his loving and protective arms. 

Until next time...

Long needed Update

It's been a while since I've posted. I'm not sure why, life has been busy since being home, getting used to my new life of having to not push myself too hard each day. But still try to keep up on house chores when I am able to. My son started Preschool in September, so now I am a school mom, taking and picking him up two days a week. He loves it and I enjoy seeing the love of learning in his eyes. He also ended up being hospitalized for pneumonia, but I will post on that in my family blog later.

As for the Lyme front, by the beginning of August I was showing symptoms returning of bartonella such as increased anxiety, insomnia, pain in my feet when I walk, etc. I had an entire list to tell my doctor, but didn't have to even tell him, because he already was asking me the exact questions like he was reading my mind. It was showing that the oral antibiotics for Bartonella had stopped working, so we decided to try IV antibiotics through my picc line. I was nervous at first. IV antibiotics are rough and harder on the system, I was scared I'd relapse and have symptoms I had in the very beginning that put me in the hospital. But for the most part everything went smoothly. It mostly just made me extra tired every day. The infusion took 4 hours a day.

first round of Antibiotics before I recieved my nice pump, I was hooked to a pole for 4 hours a day before the pump.

Trying to keep it clean, uninfected, and no clots!

Laying in bed, my favorite place to be

The view of the end of our bed - oh so gorgeous! ;)

At one point I formed a clot at the end of my picc line, which can be a bad thing. If the clot can't be undone, the picc has to be pullled out and I'd have to have a new one eventually put in. So a home nurse came and for the afternoon we worked with tPA (a drug used to get rid of clots- used alot in patients with strokes, etc.), thankfully on the second dose, it worked. It was stressful, but I was so  glad it worked. So we were back in business and my doctor increased the dose of my antibiotic. So instead of dripping my med into my picc, I recieved a pump that I carry in a fanny pack that I sling over my shoulder and it infuses a large pack of meds into me while I can go about my day and be mobile.

In September, my anxiety continued to worsen and skyrocket. I was getting nervous. Usually when my anxiety increases, my sleep decreases, and then the depression hits me. By October the depression hit me like a brick wall within just a few days. I was a weepy wreck and I couldn't figure out what the heck was wrong with me! I hate that feeling, I've felt it so many times before over the past 5 years and it scares me every time because I have no control over it, or when it will happen. So I had another appointment with my doctor to let him know what was up and he decided that with all these new symptoms and symptoms that were worsening, oral antibiotics just weren't cutting it, so we decided to go IV antibiotics all the way. So right now I infuse 2 antibiotics through my picc line every day, it takes about 5 hours. I feel exhausted, both from the medications, but also from the severe insomnia I'm dealing with at the moment. More on that in a moment. So I drip one med into my picc by IV pole over 1 hour, and then my larger bag of medication I infuse through a pump over 4 hours. So I'm only hooked to a pole for an hour, so it's not so bad. Side effects of the meds have been mostly nausea, pain (joint or nerve), and diarrhea if I don't eat enough yogurt. Yay! so fun...

As for the insomnia, it is BAD! And I'm really scared. I am to the point where I don't rememeber when I've had one good night of sleep. I think it's been weeks, maybe months. I'm really not sure. All I know is that most nights I am either up all night, or part of the night, and get 2-4 hours of sleep. When this has happened in the past, I eventually have a mental breakdown. And to be honest I feel the mental fracture in my mind already that I'm trying so hard to keep together and praying so hard that I can find some combination of medications that will work to put me to sleep all night. My medication tolerance has increased quite a bit and that's been a challenge for my doctor. So we shall see how things go. I just really hope I don't have to go through ECT (Electroconvulsive therapy) treatment again, like last year for severe depression/psychosis, which is where I was headed when I had that treatment. So, many prayers my way would be greatly appreciated that I will have lots of GOOD NIGHTS of SLEEP! and my sweet Hubby too, he is struggling with sleep and being the main caregiver of our family, being both mom/dad has been extrememly hard on him. He is truly the strongest man I know. So when I see him falter and struggle, that is when I know I need to hit the floor hard with my knees and pray like no other wife asking for as much help as possible.

We get asked by friends and family sometimes why we are going through such tough trials when we are so young. We have been through so much in just the almost 7 years of our marriage, more than many people go through in 20 years of marriage. The only thing I can say is that it has been HARD for us, but it has brought us closer together as husband and wife, and as a family. We are strong in our faith. I have a very strong testimony of my Savior Jesus Christ and what he went through just for me, and I know that he is here with me every step of the way, I am not alone. I have felt his presence in my life many times, I have felt him walking next to me during hard times such as this, and I have felt him carry me during times when I could not walk. I know there is a reason God has given me this trial of my faith and physical and mental health. I know that it will be a way to help others someday, I already have seen this in small ways. I've been able to help others in very small ways to understand that they are not alone in their struggles. If that is why I am going through all this, then so be it, I will do it, so I can be more sympathetic, helpful and be his mouthpiece to help others around me. I just keep praying that my back stays strong enough as I carry this burden through my own life.

As Elder Jeffrey R Holland recently said in General Conference "may we live by faith, hold fast to hope, and show “compassion one of another". http://www.lds.org/general-conference/2013/10/like-a-broken-vessel?lang=eng

Update

It's been a while since I've posted. I'm not sure why, life has been busy since being home, getting used to my new life of having to not push myself too hard each day, and dealing with the repercussions of when I push myself too hard (which happens all too often). But still try to keep up on house chores when I am able to. My son started Preschool last week, so now I am a school mom (feels so weird! I don't feel old enough!), taking and picking him up two days a week.

As for the Lyme front, by the beginning of August I was showing signs that yeast was back in my gut full force, even though I'm on two anti-fungals (Nystatin and Diflucan). So I made an appt with my doc and he decided my body has become somewhat immune to these meds and we went to bigger guns and started a round of Ampotericin-B (known to be used only as IV for patients who are septic and can be very toxic to organs such as liver and kidneys, but this is compounded into oral form so it's only absorbed in the gut). I didn't notice any die off reactions in August that he had warned me about. Meanwhile I was having more daily headaches, increased migraines, increased daily sweating (I would have to change all my clothes after walking through walmart for groceries, or the library... and forget putting on makeup! there is no point! I would sweat it all off within the hour). I also noticed that when I stepped out of bed in the mornings and through out the day, the bottoms of my feet would hurt (pin prick pain and heel pain)- symptom of Bartonella (co-infection of Lyme that I'm being treated for), along with my anxiety and panic attacks starting to come back (I haven't had problems with my anxiety and haven't had to take anxiety meds in about 4-5 months. So when I had my recent appointment with my doc, he started listening to my list of symptoms, and stopped me. He then said he wanted to ask me a few questions first. He began to ask me questions as if he were reading my list that I had written! He would say "have you had worsening of this...." "well yes, actually I have"... so, come to find out my Bartonella treatment doesn't seem to be working any more. It's coming back! oh Joy! I also have figured out sugar causes me headaches and nerve pain up and down my spine and in my joints. Chocolate also causes me pain. IT TOTALLY SUCKS! I LOVE SUGAR and I LOVE CHOCOLATE! But I have decided I am tired of week long migraines and daily headaches and nerve pain that can only be treated with morphine, so I have cleaned out the cupboard with what is tempting to me, and I am now Gluten free and sugar free (well mostly sugar free... low sugar or sugar substitute- though I have to be careful of certain substitutes because some can add to my headaches). I've read of other lyme patients who have to stay gluten free, sugar free, chocolate free, caffeine free, etc. throughout life, because it can cause symptoms to come back, and relapses to occur. So I fully expect that this may become a complete lifestyle change for me. But if it makes me healthier and helps me feel better, and helps me loose the weight I've gained, then I will try my very best to stick to it. I have fallen off the wagon once, it's hard to stick to this type of diet. It is strict, it takes alot of energy because you have to make alot of things by scratch, and most store bought items that are healthy and gluten free are EXPENSIVE and hard to find in the area I live. Needless to say, our food bill this month was a gouger! ouch! It's going to take some time to build my gluten free reserve of food in our pantry and get used to no sugar. But it also keeps me from wanting to "over eat" or snack when I'm not really hungry because I just have to think about how expensive it is, and I decide, I'm not that hungry, I think I'll go chew some gum instead.

So in summary, I am at a standstill in treatment. My gut is full of yeast, my bartonella is coming back, my lyme treatment has hit a wall. I am up most days and able to care for my son (though I have help from my angel sister a few days a week so I can rest), I do have to take 1-2 naps a day, and I have to really decide what I want to spend my energy on each day... for example do I want to take a shower and do the dishes? or do I want to do laundry and sweep the floors? I can't do it all. And other days I can't do any of it.

So, my doc and I decided to go for the big guns... IV antibiotics. In a few days I will start IV antibiotics in my PICC line. I am scared to death! I'm scared that I will have severe reactions like I did months ago, severe Herxheimer (die off) reactions, I know it means it's killing the bacteria, but it is beyond miserable and I don't want to go through that Hell again.

I also found out a few months ago from a blood test that I have a gene mutation that means my body under-produces Glutathione (the IV med I give myself every 2-3 days). Since my body doesn't produce enough of it on its own naturally, that is most likely the reason why I still need so much of it this far into treatment through IV. It also means I will need to find supplementation for the rest of my life after my picc line is removed. I've also learned that it's probably also the reason why I've also always had problems with endurance when it comes to sports and running, getting sick often and taking longer to recover from illness, etc. It's been very interesting to learn about. It has made me wonder if my son also has the mutation, he gets tired faster than other little kids his age when he's out playing, so I do worry. But with this knowledge, I hope I can help him to not have the same health problems I've had.

As always, this continues to be an eye opening and huge learning experience for our little family.

Lyme Disease Warrior

Oh I forgot to show the sticker that I've had specially made for the back of my car:

"Warrior" makes me feel stronger than something like "survivor", especially since I'm still fighting. I do hope it brings out questions from people around me. I'm wanting and trying to spread awareness slowly.

Lyme in the Spotlight... Homefront news

I've been happy to see some video segments done about Lyme disease on places like Fox News last weekend:

 http://video.foxnews.com/v/2584466440001/living-with-lyme-disease/?playlist_id=930909749001

I enjoyed that it was true facts, just wish it were longer.

As for myself on the homefront, well things are up and down as usual. It is nice to be home with my little family again Some days I'm able be up walking around taking care of Ethan and doing laundry, maybe sweep the floor or do the dishes, either way, I have to remind myself to rest in between each chore. My competetive edge gets me almost every time though and I always try to push myself too much and pay for it later. It's like a never ending lesson in learning how to slow down after living so many years going a million miles an hour. My sister has been here this week, she has been a true angel cleaning, unpacking the last of our boxes, and getting everything organized for us. Ethan is stuck on watching Mythbusters at the kitchen table all day now, which I'm not happy about, I want him to play and move, but as most days are still spent in bed, it's hard for me to keep tabs on him all of the time. He has been able to play with cousins every couple of days and that has been great for him. I'm glad we live close to family.

Last week I had Jordon bring my bike out and told him I wanted to take it for a short ride to see how I handle things. I keep hoping I can slowly work back into strengthening my cardiac, lungs, and leg muscles. He was really worried, but he pumped my tires and held the back of the bike as if I was a child helping me until I got my balance back, I rode down our street slowly and then back. I was very short of breath and knew I should stop, but of course my stubborn side was saying "no, keep going!", but I stopped and said to my husband who was waiting for me "one small step at a time right?" I haven't gotten back on my bike since, but hope to again soon.

Yesterday was a day I felt locked in my body like it was a prison, it just wouldn't move and my brain wasn't working right (brain fog). When that happens, I can't read books, if I watch movies, they have to be ones I've seen before so I don't have to think so hard and focus so hard on them.

Since my picc line, taking showers and baths are harder, I tend to go days without one (I know, ewww), mostly because I'm still too tired and it takes too much effort. I have to suran wrap up my arm and tape it up good and then keep my arm up and out of the way of the water while I wash one handed. I prefer the help of my husband, but by the time he gets home at night, I'm usually spent and have no energy to take a shower.

I've been learning more about Glutathione and what it is, and what it does in the body, especially since it's my medication that literally keeps me going. I also found out recently that I have a gene mutation that in short terms means my body underproduces glutathione on it's own (yes, your body produces glutathione in the liver, it's like the mother of all antioxidants and helps cleanse the liver and other organs of toxins), apparently my body underproduces, which explains why I'm still having to give myself IV glutatihone in my picc line every 2-3 days 7 months into treatment to keep my body stable. I'm on a supplement that is supposed to help the body produce glut, but so far nothing. So the next step will be to "explore genetic testing for other detox abnormalities" as stated by my doc.... still not sure what that means yet, but I will learn more soon. Either way, life is still difficult, there are days when I wonder to my heavenly father "why does life have to be so darn hard?!" and other days when I am able to brush it off and put one foot in front of the other, taking things one very small painful step at a time, reminding myself that life is a journey of learning and of being perfected and polished. I guess I have alot of polishing to be done...

Meet Rebecca Barnett and her fight against Lyme

Meet Rebecca Barnett

I saw this video of Rebecca's fight on my friends blog http://livininthelymelight.blogspot.com/. I watched it and cried because it hit home so hard for me. Her seizures she would have brought back so many memories of my first few weeks of treatment and how I always told people how I felt as if I was having a seizure but conscious, to this day, I truly believe I was having seizures. Especially as I do more and more research and watch other's in their fight against Lyme.
(Its definitely worth taking 6 minutes out of your day to watch.)

Thank you, Becca, for sharing your journey with us. 

"My name is Rebecca and I'm sharing a part of my story with you in hopes that this increases your awareness and may even help you. I guess you could say it all started when I was nine years old. My family decided to go to the park, which was surrounded heavily by woods. That evening my mom noticed a tick on the back of my neck. We got tweezers and removed it. We did not go to the doctor because at the time, we were uneducated about Lyme Disease.

 I don't remember being truly effected until I was eleven. I would get headaches everyday and I would feel sore. We thought it was dehydration, but no matter how much I drank, the headaches continued. The time gaps between my symptoms were very odd but we do believe I got bit more than once. Our theory is that I was bit and the illness remained dormant until I was bit again at a fall retreat when I was thirteen.

My last year of junior high is when it all unraveled. Right after a fall retreat, I showed symptoms such as; jaw pain, fever, headaches, paleness, stiffness, stomach aches, fatigue, joint pain, and a rash on my head. Never once did Lyme disease cross our minds. The Dr.'s made excuses for every symptom. Jaw pain was my braces, the pains and aches were from track, and the fatigue and moods were normal for a growing teenage. I later went to the doctor for the fever and the rash (not a bull's-eye). My Diagnosis? " Sweetie It's viral, and did you change your shampoo?"

Later that same year, my vision started to go and I needed glasses. I also got my wisdom teeth out and it took me about a month to recover instead of the usual week. In school I was very moody and quiet. When I was in the halls I felt as if I was walking in slow motion. Everything seemed to bother me; the people, the color of the rooms, the light... My menstrual cycle also was so painful and irregular, I had to stay home in bed. We saw many specialists and doctors and got no answers. A few weeks after school had ended, I went out for Ice cream with friends. As I ate my ice cream, I had excruciating stomach pains. The whole right side of my body was numb but my left side was not. My mom rushed me to the hospital and they discovered my spleen was slightly enlarged and they tested me for mono. They sent me home telling us it was fluky and nothing was wrong.

Here's where the ironic thing happens. My parents posted on Facebook about our hospital trip. My mom being Facebook friends with my brothers doctor, contacted my parents about the possibility of me having Lyme disease. This doctor treated my brother for early stage Lyme, and she is currently under scrutiny for treating Lyme. I was tested for Lyme disease and was positive. Tests for Lyme are very inaccurate, so we also sent my blood across the country to IGNEX. My blood work for a co-infection called Bartonella was found to be slightly raised and I was clinically diagnosed for Babesiosis as well.

I had the diagnosis, but now what? I was put on oral antibiotics for about 9 months. After no improvement and only getting worse neurologically and physically, we sought out further treatment somewhere else. At this point I was in a wheel chair, I had been to the psych center multiple times, had seizure like episodes almost everyday, and was sleeping all day long. A good day for me was when I could get up to go to the bathroom. Sometimes I didn't even recognize my own family members.

 After getting significantly worse, we called a Lyme Specialist in desperation and were immediately scheduled for an appointment the next day. We drove three hours and the doctor said I was one of the worse cases he had ever seen. He immediately requested a PICC line insertion for IV treatment. Just when I thought I couldn't get any worse, I DID. With Lyme Disease, when bacteria dies off, you feel worse. This is known as a herxheimer reaction or herx for short. Some of my worst symptoms at this point were dramatic weight loss, and not being able to talk, eat, walk, hear, or see. I literally had every symptom of Lyme and the symptoms that came with the co-infections. We thought I was going to die.

For 7 months I was treated with IV. After a few months, I started to notice improvements physically. Being able to walk is something I will never take for granted again. After missing my entire freshman year of high school, I was ready to go back to school. Every day more of my symptoms went away and the better I got. My PICC line was pulled and I continued oral antibiotics for two more months. I missed my sophomore year for about 4 months. I had my gall bladder removed because of gall stones which was a result from the IV treatment. If I had to choose my life over my gall bladder, well, it would obviously be my life. Towards the end of my sophomore year I noticed symptoms returning. I had a small relapse but nothing compared to the previous year. We treated it with a few months of oral antibiotics and I'm currently in remission again. Yay!

 Lyme disease ruined a part of my life I cant get back. We had to move and sell our house and I lost many friends because of my neurological state. My family is not the same and our lives have done a complete 360. Neurologically, I have been greatly impacted due to the Lyme Infection reaching my brain. I now deal with anxiety, depression, and bipolar disorder. Who knew a little tick could have such a big impact? Lyme disease can impact the body so much, it has been known to kill people. 

Writing this story is very difficult. It's hard to think all this had happened to me when I'm feeling so great right now! In fact, I've forgotten most of what happened. This is because I believe my brain was protecting me from the trauma I experienced and also the fact that memory loss is a symptom of Lyme. My family helped me write this because they lived through it with me. In a way I'm glad I got Lyme, it opened my eyes to how precious life is. It really has helped me grow as a person spiritually and emotionally. I wish more people knew of the damaging and dangerous effect it can have on their lives. Thank you for taking the time to read this! "

 

 

---------------- -Becca- ----------------