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- ----------------

What does fatigue feel like to someone wiith Lyme Disease?

Meet Lyme Survivor Jennifer Crystal, she has PERFECTLY described how fatigue feels to a "lymie" (lyme disease patient), so I thought I'd pass on her eloquently written words because they fit my life perfectly.

(Article from LymeDisease.Org)

"A few weeks ago, there was a small fire in my apartment building which necessitated three separate evacuations between the hours of 2:00 and 5:00am. Needless to say, it was a long night, and no one got much sleep. The next day I felt buzzy and glazed over, the same feeling I used to get in college when I stayed up too late writing a paper. I was tired, but it was normal tired, not sick tired. It’s a difference Lymies can recognize all too well, but one that’s hard to distinguish when we talk about a general symptom of fatigue.

Fatigue can mean a lot of things. It can mean muscle soreness after a bike ride. It can mean feeling drained after a long day at work. It can mean droopy eyes, the desire to take a nap, the need for an extra cup of coffee. It can even mean the buzzed feeling I experienced after a night of little sleep. All of these descriptions fit into the category of “normal tired.” What makes them normal is the base level of health underlying them. If a person is otherwise healthy, they are able to push through symptoms of normal fatigue because their adrenals are working properly and their bodies are not worn down from fighting infection.

“Sick tired” is another story. The fatigue of tick-borne diseases is not a general malaise that can be fixed with a nap or a cup of coffee. It is a crippling flu-like exhaustion, one that leaves muscles not sore but literally unable to function; one that makes the body feel shackled to the bed; one that makes the effort of lifting one’s head off the pillow seem like a Herculean feat. There were times, at my lowest point of illness, when I literally felt too tired to breathe.

It’s hard for someone who has never been that sick to understand what a person with chronic tick-borne illness means when she says, “I’m so tired.” I’ve had well-meaning friends say, “I’m tired a lot too,” but in the next sentence they tell me that they’re going to the gym or planning a party. This means they are “normal tired,” and while I sympathize with that, I wish there were more specific nomenclature to distinguish between our two very different definitions of fatigue.

This lack of distinction is especially unfair to patients with chronic fatigue syndrome, a nebulous umbrella under which many Lymies fall. “Fatigue” is hardly a strong enough word to cover what it feels like when your adrenals are shot, your nervous system has gone haywire and your body refuses to function. Even as a writer, it’s hard to articulate exactly what I mean when I use the word exhausted. My best effort at putting “sick tired”—specifically, the sick tired of chronic tick-borne disease—in layman’s terms is, Imagine you’ve partied all night and wake up with the worst hangover you’ve ever had. Your head is pounding. You’re overly sensitive to light and sound. You stumble to the bathroom and barely make it back to bed. Whatever you originally had planned for the day—work, homework, a run—is out of the question. You’re not sure if you’ll even be able to manage basic tasks like bathing and eating. You roll over and go back to sleep. Then imagine you wake up the next morning with all of the hangover symptoms still there, but now, you also have the flu. Not just a mild case of the flu, but a full-on bout of intense fatigue coupled with aches, fever and chills. Imagine this feeling goes on for days, and then weeks, and then months, sometimes even years. That’s Lyme disease.

It took years of medication, alternative therapies and hard work for me to get out of the rut of “sick tired” and battle my tick-borne diseases into remission. However, I still have to be very careful about pacing myself, or my “normal tired” can quickly slip into “sick tired.” The day after the fire alarms in my building, I had to cancel everything on my schedule and just sleep. Some may say it was a luxury that I was able to do this, but I see this one day “off” as a preventative investment against the weeks or months of them that can come back if I’m not careful.

By the same rationale, I take a nap every afternoon, without exception. If I don’t, I hit a physical, mental and emotional wall, melting down like a small child. Pushing through naptime causes me to go into a state that I call “pulling”—a feeling of having to pull myself through the rest of the day, and perhaps the following day, until I can get adequate rest. Without it, I am too tired to walk distances that are otherwise easy for me; I can’t think straight and mix up or forget my words; I overanalyze everything and become emotionally off-keel. Napping for me is thus not a luxury, but a necessity. In essence, I heed the alarms of my body, putting out the small fires before the blaze becomes out of control. And that makes nights with real fire alarms manageable."

Lyme survivor Jennifer Crystal is pursuing a Masters in Creative Writing at Emerson College, in Boston. Her website is jennifercrystal.com. Email her at jencrystal5678@gmail.com.

- See more at: http://lymedisease.org/news/touchedbylyme/jen-crystal-fatigue.html#sthash.HD8BEMWj.dpuf

The Unpredictablity of Lyme

Yesterday after only sleeping 3 hours the night before (leg cramps that I get from time to time) I had a burst of energy and decided to do a load of laundry, since we need clean underwear, and a trip to the nearby grocery store. I thought I wasn't doing too much and pacing myself, but waking up this morning in pain tells me otherwise... How frustrating! I really do try to pace myself, but my "pace" right now is slower than a slug, it sure is testing my patience and humility. I hate Lyme! It royally sucks! Just had to vent that... Now I feel better psychologically at least today. We will see how I do physically, looks like pain meds and ice are in my future today.

Deer, family Reunion, and I'm still alive... Sort of

This past weekend after my picc line procedure and dr appt Thursday evening for a dressing change, my family got on the road late and started driving towards our family reunion in Utah. I gave myself a dose of glutathione just before leaving, in hopes that it would help me survive the trip. It sure was nice not having to find a vein and give myself an IV. As annoying and sore as a picc line can be, it's very convenient when needed. 

Within the first few hours of our trip we hit a deer on the freeway going about 70 mph, it hit our right front side of the van. My father inlaw kept driving until a little later when we pulled into a well lit gas station where we found the damage to be worse than expected, and the radiator dead. So we were stuck for the night. We slept a few hours in a motel nearby and then by a miracle we were able to rent an SUV with a trailer hitch (we were hauling a trailer) and were able to continue on our journey. It was a VERY long car ride and I took alot of pain and migraine meds to survive. But grateful to my parents for helping get my son and I (and our things) down to Utah to meet up withy husband and spend the weekend with grandparents, aunts, uncles, and cousins. I admit I put on my "fake" face too much all weekend, and in some ways I see it now as being prideful and selfish, not wanting anyone to see me sick or have to help me. I'm still learning how to accept help, even after all these years of chronic illness, you think I'd learned by now! My husband reminded me that when I am trying to do everything and not let anyone help, that its really hard on him and others in the family who help. Humility is definitely a lifelong lesson for me, right alongside patience. 

So as of now, I am home in my own bed. As soon as I hit my pillow, my body let go and now I feel like I've been hit by a Mack truck, muscles are stiff, joints are burning and sore and I feel like I have a hangover from all the large amounts of big medications I took all weekend to survive. I am on my own this week with my son for the first time in months and My sweet husband has arranged help so I can rest, which I'm extremely grateful for, considering I slept most of today and I know tomorrow and Wednesday will be similar for sure. 

During the reunion my picc line dressing was in the crease of my arm and so irritating, so I asked my sister and mom (both nurses) to change my dressing and reposition it higher on my arm, all while giving my husband a big lesson on how to change sterile dressings, etc. just I'm the 2 days I had my picc dressing into elbow crease, my skin started to break down! 

When I saw that, I felt justified for feeling so sore, bit it was also surprising. My sister did a really nice job and its out of my elbow and already way less irritating, thank you Ran! 

I also have been experimenting with crocheting a cover for my arm. So far, it's either, too big, too short, or the holes are too big... 

I may break down and buy a nice little cover off etsy so I don't have to make it myself. I'm totally into making everything easy right now. Till next time!

Picc Line... A Definite First For Me

Well I had a PICC line put in today so I don't have to give myself anymore IVs. It was an interesting procedure (my medical side always piques with new procedures I haven't seen or done). Thankfully, the staff was very cool about showing me and telling everything they were doing. I got to see what veins and arteries look like on an ultrasound and how to decipher between the two, I watched as they cleaned and cleaned and draped my arm to keep everything clean and sterile. The doctor gave me a shot of lidocaine and then made a very small incision in my biceps area were he then proceeded to feed a wire into the vein (this felt weird and a little painful in the chest), all while looking at it through X-ray to make sure placement was correct. Then he fed the catheter, which is made of silicone through the wire and then pulled the wire out... And Ta Da! All done. Then there was alot of clean up, sterile dressings, and then I got changed. But while I changed I started bleeding more than usual, so I had to go back and have a second dressing change. I will also be meeting up with my Dr tonight in Seattle where he will change my dressing again and teach me and family how to properly clean and keep the area clean and dry. Then the plan for us is to head home to Idaho, so a long road trip ahead once again... I'm resting today, my arm is sore and irritated, but I'm grateful it's not worse. I can handle sore...

(The blue smurf look is just from their cleaning prep, I haven't washed it off yet)

A little bleeding, but hopefully that will stop soon. Looking forward to not having  to give myself anymore IVs. Just hope it stays clean and free from infection or blood clots.

PICC Line

Life with Lyme sure can be whiplash. I saw my Dr last week and he was happy with my progress, but we also discussed my concerns and problems I was continuing to have. So, many meds and supplements were changed. It's really embarrassing to go to the pharmacy and pick up 7 prescriptions in one day, after picking up 6 prescriptions less than a week before. Of course, one of the changes was an antibiotic, and we are having to slowly start from scratch and increase the dose, which is causing herxheimer (die off) reactions. They are mild, but still no fun. I ran out of glutathione this last week (and waiting for it to arrive in the mail) and so it made things even worse to the point that I went back in to the office today to have them give me IV glut in office because I was feeling so terrible. My dr saw me in the waiting room and took one look at me seeing how much I had changed (good to bad) in just a week. We talked about how I can only go a few days without IV glutathione and that it's getting harder and harder to stick myself, and that my veins are not healing fast enough. We discussed how the body is supposed to naturally produce glutathione on it's own, but some people have a mutated gene, last week I had a DNA analysis to see if I have the mutated gene that would be keeping my body from producing glutathione on its own, we are still awaiting results. In the meantime, I was put on a supplement called Methyl-gaurd that is supposed to help my body produce Glutathione. I told him I had increased the dose over the week and hadn't seen any improvement. It was then that he decided a picc line would be the next best option for me. It will make giving myself glutathione easier, and if we eventually go to IV antibiotics, there will already be a line in place. I politely told him I was leaving for Idaho on thursday and he muttered under his breath "shit", and then nicely made phone calls to try to get me into a the radiology clinic as fast as possible. So I have an appointment on thursday to have a picc line placed in my arm before I leave town. I'm nervous, I don't know what to expect and I worry about keeping it clean and keeping it from infection. But I know it's for the best right now. I just hope I can get the procedure done, a dr appointment in the evening to have a dressing change and learn from my doctor how to properly change the dressing site, and then leave for our road trip and ride all night back to Idaho and not have too much repercussion from the trip or the procedure. I just keep reminding myself to be strong, keep fighting, I can do this! I have to do this for my little family because they need me! and I love them more than anything in this world!

10 Scary Facts About Lyme Disease

1. Only 1 in 2 patients develop the classic bull's eye rash.

This means you have a 50% chance of not getting diagnosed correctly after a tick bite. As many as 64% patients with Lyme Disease do not remember being bit by a tick. 

2. Standard blood testing for Lyme has an estimated sensitivity of less than 50%.

This means diagnosis through current antibody serology is as accurate as a coin flip. A bill was passed in Virginia which requires doctors to tell patients a negative result does not mean you do not have Lyme Disease. 

3. Most ticks carry multiple disease causing pathogens called co-infections. 

A tick can host up to 30 different pathogens. Species that are not tested by current CDC guidelines are Babesia, Bartonella, Mycoplasma, Ehrlichia/Anaplasma and more. Many of these co-infections do not respond to standard Lyme treatment (Doxycycline), Yikes! 

4. The average Lyme patient takes 2-3 years to get diagnosed correctly. 

That's a really long time for Lyme Disease pathogens to get comfortable in your body! Late stage treatment increases the risk of treatment failure and Lyme Disease becoming chronic. 

5. Lyme Disease can cause over 300 different symptoms. 

Lyme Disease pathogens can affect multiple body systems and produce a range of symptoms. Symptoms so diverse that lyme patients often get wrongly diagnosed. 

6. A tick nymph can be smaller than the period at the end of this sentence. 

This means it's very easy to miss a tick bite if you don't inspect your body on a daily basis! Be alert, an estimated 25% of all ticks carry Lyme Disease. If you spot a tick, remove it as soon as possible. This reduces (but doesn't negate) the odds of contracting Lyme Disease. 

7. Lyme Disease is more epidemic than Aids, West Nile and Avian Flu combined. 

Lyme Disease is a global epidemic. The CDC estimates that there are nearly 325,000 new cases each year in the USA alone. Yet, this is only a faction of the actual numbers, due to inaccurate tests and underreporting. Each year, thousands go undiagnosed or misdiagnosed, often told symptoms are all in their head.

8. Lyme Disease bacterium can survive short-term antibiotic treatment.

The current international treatment guide-lines recommend a 2-4 weeks course of oral antibiotics. This treatment however, does not guarantee eradication of all Lyme Disease pathogens. New studies show that Lyme Disease pathogens are highly adapted: They evade destruction by antibiotics and subvert the adaptive immune system. 

Large scale patient surveys show that short term treatment fails for over 90% of patients with Chronic Lyme Disease. 

9. There are 12 strains of Borrelia that are known to cause Lyme Disease, standard serology only test for one. 

The agent known to cause Lyme Disease is called Borrelia. This bacterium has many strains causing different symptoms. Current standard blood testing only looks for a single laboratory strain! This means you have a big chance of going undiagnosed with a less known strain, like the newly discovered Borrelia Miyamotoi.

10. Lyme Disease transmission might not be limited to tick bites. 

In addition to ticks, Lyme Disease may be carried and transmitted by fleas, mosquitos, and mites. Lyme Disease is not exclusively vector-borne. New theories suggests transmission could take place through the placenta, by contact with breast milk, blood, raw food, and saliva. 

Thank you to my friend Jenna over at http://livininthelymelight.blogspot.com/2013/07/10-scary-facts-about-lyme-disease.html for sharing. I am getting so big on awareness, I want to do all I can to get information out to all. 

What I'm Like without Glutithione... Meltdown

I didn't realize I was down to my last dose of glutathione, and it takes about a week turn around or more for my Dr to send the prescription to the special pharmacy who then sends it by mail. Well I am on about a week of no glut... The longest I've ever gone, and it's not pretty. One good thing out of it all is knowing that my body needs IV glutathione every 4 days, and then I'm usually doing pretty good afterwards. Without it, I lose my balance, trip over everything including my own feet, drop everything (almost as if my brain doesn't quite tell my hand to grip the object hard enough), I become very shaky, nauseated, sometimes headaches and migraines, and I get very emotional. I call it my "meltdown". I've realized when it happens that I over react about everything and I'm overly sensitive and emotional about everything. So I have to say to myself "is this my thoughts and feelings, or is this the Lyme speaking?". 

So the other day I was on the verge of a meltdown and usually I want to go for a drive when this happens to be alone, so I got in the car, turned on my music and drove. I was feeling a little more put together a little later, until I noticed a Motorcycle Officer with his lights on and I passed an apartment complex full of multiple ambulances, fire truck and police...a firefighter walking by the open back of an ambulance with a patient in the back... And then I lost it, I just started to cry. I feel like never again will I be apart of the family/brotherhood that I had worked so hard and loved being apart of with all my heart and soul. I keep thinking it will get easier with time to let my dream go, and maybe it will. But for now it feels like every time I drive by a fire truck, an ambulance, drive past a station, see medics, EMTs, and fire personnel, or watch movies about fire/ems, it's like ripping off a bandage and ripping a piece of my heart out every time. It's still a very fresh painful wound no matter how hard I try to hide it. That's my rant for the day... I can really tell my body needs glut because I feel terrible physically and feel like crying about everything. 

Energy

I'm back in Washington for a few weeks. The drive was long and hard on my body as usual. It took me about 3 days for my muscles and joints to not be in so much pain and so stiff. On the plus side though, I continue to still have more energy and I'm continuing to be able to do more each day. I suprise myself and my family with what I'm able to handle. I still have a long way to go in order to get back to becoming a full time mother and wife, and constantly have to remind myself not to overdue things, but for the first time in many months I can recognize improvements in myself, and that's huge for me! I continue to have to give myself IVs twice a week, be in and out of a wheelchair (though less and less), and take handfuls of pills a day along with vitamin shakes to keep me going, and trying my best to stick to a good food diet. But in the mean time, I am enjoying the small moments of happiness such as doing the laundry, doing a load of dishes for the first time in 5 months, puttting ethan in the bath, putting him to bed, going grocery shopping and not always having to use the zippy carts, and being able to walk up and down stairs more often without being out of breath so quickly. Every little bit counts to me and I pray for continued improve.

Serving Others

I feel that God has truly helped me these past few days by giving me the strength I've needed in order to serve other loved ones in need. I have come home each night feeling exhausted and sore, and wake up that way too, but it has felt so nice to help someone else for a change. I wish no one had to suffer and need help, but that is all part of mortality, and so is serving and helping others, and also being willing to accept help when you need it, and I know that can be difficult on your pride. though it was taxing, I feel happy. I am grateful my Heavenly Father gave me extra strength this week. I truly thank him for that.

My Sweet Husband

I had this whole "woe is me" post planned out... it's been that kind of day today. But then I saw this new video that was just put out by my Church (The Church of Jesus Christ of Latter-Day Saints), they put these "Mormon Message" videos up every once in a while (if you go back to post #1 on this blog, it's a Mormon message that explains my inspiration for the title of this blog). Anyways, I love these short videos they produce, they always end up making me cry and always seem to be something that I need to see at this particular moment in my life.

 

I watched this and just cried because even though we are not old, and my husband thankfully does not have to suffer from such shaky hands, we both relate to this very much right now. Never did my husband and I as teenage sweethearts in sweet bliss ever think that at 27 he'd be pushing me around in a wheelchair, carrying me up and down stairs, spoon feeding me when I am most ill, getting me food, ice, water, whatever I ask for, helping me in and out of the shower so I don't fall, helping me in and out of my clothing so I don't fall and so I don't have to work so hard, etc. But he has and still continues to do all that and much much more and he never complains. So here's to my Forever Sweetheart, thank you for being the amazing selfless man you are, I love you and I'm so blessed to have you in my life!

On My Way Home... I'm home!

Well I'm on my way home! I'm wrapped in a blanket, sitting on a body pillow with my legs elevated on the dash (so they don't swell), my bed pillow behind my head, neck pillow just in case, lots of fans, spray fans and ice packs too for along the way. We have no AC, but we might get lucky and have pretty mild weather

, which would be a blessing for my body! There are tons of water bottles filled with water, water jugs, and a lot of Gatorade and powerade to get us home alive and hopefully feeling somewhat well. Well, as well as you can feel on a 12 hour drive with Lyme disease.

We've been home a few days now and getting settled. The drive was surprisingly cool, it was a true miracle catered just for what my body needed to survive the drive. My sister and kids are angels helping us get comfortable. The house had already been mostly decorated by my other sister and my mom, family sure is wonderful! It took my body a good 2-3 days to recover from the drive, though sometimes I feel I'm still recovering. I have had a lot of problems with edema in my legs lately, so I am concerned how my liver and kidneys are holding up. I'm having to keep my legs up a lot, I also have to rub lavendar oil on them every night or I end up awake in pain till 4am. I am frustrated at my body, I still have many or most days when I try so hard to be normal, and I end up tripping and falling on my face (usually right when I step out of bed) and remember I can no longer be the girl that goes 150mph. My last glut treatment was aweful, my veins are not happy with me.

But I'm happy to be home with my little family in our own home again for a few weeks.

Still Sick and heading home

I'm in the midst of getting ready to head back home to Idaho. I am nervous and excited. I made this decision for many reasons. One of which is that I am doing better. But when I say that, I don't mean that I am better. I am reminded daily of how sick I still really am. Take today for example, I really needed to wash my hair, that is one task that I can only do every 3-4 days because it takes up so much of my energy. So taking a shower, washing my hair, and if I want to try to dry my hair and put any make up on... well I'm pretty much spent the rest of the day. Forget any plans I had, they all go down the drain. So I end up laying in bed looking "pretty" and can't move because I'm too tired and in too much pain.

My liver is inflamed again and my spleen feels enlarged and painful, which isn't unusual since my Epstein Barr Virus titers were high and when a person has active Mono, you usually have an enlarged spleen. Either way, it has been painful. I am on a lot of heavy duty medications that can damage the liver, and I am also on a lot of supplements that are trying to help the liver clean itself out, so I keep praying that I won't permanently scar it in the process. My last blood tests showed high liver enzymes, but that was about 3 months ago. I'm awaiting new results to see what they say. I'm also having more and more acid reflux and can tell my stomach lining is taking a real beating from the minocycline. My yeast is coming back (even though I'm taking Diflucan and Nystatin to fight it), I see it every morning very clearly on my tongue (thick white patches and bad breath in case you are wondering). So there will be a lot to discuss at my next appointment with my Dr here in Seattle. I have delayed increasing my dose of Biacin this week because of my liver pain, seems I need to give my body a few more days to rest and I figure waiting till I get back to Idaho where I'm not in a car, is probably a better place to be when I increase my antibiotic dose again and await any herxheimer (die off) reactions.

There are many things having to be put in place in order for me to come home, some things I have to do when I get there, others like ordering my own wheelchair so we have one at the house when I need one is an example. Also ordering some pre-made meals from companies like Schwanns, that delivers to your home, looking for someone to come help clean the home once a week or so, etc. Until I can get back to doing it myself. The hard part is not knowing how long it will be before I can do all those things on my own again. Until then, life at home is going to be very different for us and very simplified. I have to be very aware of what my body is telling me at all times. For example, if we are out and about at church as a family and my body is telling me "you need to lay down" then I need to listen, leave, go home, and rest. I won't be able to have people over to visit often at my home for quite awhile until I can handle it. It's just a lot of adjustment for all of us.

Gratitude

I am going to make this short and sweet tonight. I have a Blogger app on my iPod that helps me be able to write quick posts, it's really great.

I have made the decision to head back home to Idaho to be with my husband as a family again. I can't remember if I said all this already, but I'm both looking forward to it and scared of how I will handle things. But tonight I just had a random thought that I am really grateful that these past few months (ex out the first month) I haven't had to go to the ER or be a hospital patient. I am grateful to my LLMD (Lyme Literate MD) for this. He has been so willing to work with me on whatever problems arise. So thank you Dr. Martin Ross! I look forward to going home and being able to work with him long distance. 

Savior, Redeemer of My Soul

I'm Just having one of those days again... The kind where I feel like I've been dragged and beaten. But all is well, I know things will get better. It's days like today that I really miss my husband and my home. I can't wait to be back home again and get daily hugs and kisses from him no matter how good or bad I'm feeling. But it is also these days that make me stop and really reflect on my Savior Jesus Christ and try to remember that he knows and has felt all I am feeling. It's hard sometimes to imagine there is someone who knows you better than yourself and has felt everything you are feeling. I have to remind myself that he is my Brother in every definition of the word, and my Savior who died for ME so I can live with my Heavenly Father again. He is there for me when no one else is, when I find myself in the fox holes and trenches of life, he is always there beside me ready to help, all I have to do is just ask and allow him into my heart. There are two beautiful songs that I want to share this Sunday. They are songs I listen to that help get me through some of my darkest hours. The first is called "He'll Find a Way" By Dallyn Vail Bayles

 

 

The second is called "Savior, Redeemer of My Soul" Also performed by Dallyn Vail Bayles (excuse the Spanish in this video, I loved the pictures though).

 



 

(For anyone wondering: Dallyn Vail Bayles is a member of the Church of Jesus Christ of Latter-Day Saints, he also played Hyrum Smith in the most recent Joseph Smith movie. He truly has a beautiful voice. These videos are not mine, the paintings are mostly done by LDS artists.)

 

I wonder sometimes why it is so hard to let the Savior in our hearts and our lives. It is one of the hardest and yet one of the easiest things we can do in our lives. But I believe it's hard for us as mortal beings because we have to take that blind leap of faith and TRUST him that he will help us, that he won't hurt us, that he won't let us down. I think in the easiest definition, trust is what makes it so hard. I also wonder how we can have these moments in our lives when we come so close to the Savior and feel his presence near us, and can bear true witness of his divinity because we have felt it... and then within months or years later when all is well again in life, we can forget those feelings and easily forget him and shut him out of our lives. To all who are reading this and struggling, let Him into your heart and life, he is waiting to help you:

 

Let him hug you and hold you in your time of need:

 

He is always there to wipe away your tears:

 

 

 

 

 

IV Glutathione in Photos

Well it's IV Glutathione day for me. Most Lyme patients have to go into the Drs office to have this done once or twice a week, which is expensive! Lucky for me, my Dr trusts my medic skills and has allowed me to do this at home. I thought I'd give you a photo view of how it's done... Granted, I was doing this all by myself ad taking the photos by myself, so sorry for the bad shots and blurriness.

The supplies out on my bed:  

Paramedic Liana (just having a little fun)

Pulling up Glutathione in the syringe

Glut and Sterile Water mixed and ready to be infused

Tourniquet on and seeing a good AC Vein...

Butterfly needles I use (really different than what I'm used to using as a Medic)

It's a 25G (tiny) so it really just pinches)

And we are in the vein...

Infusing by myself is a juggle!

And bummer... The vein was bad (too damaged from so many sticks in the past) so I had to re-stick a second time in the wrist

Fun stuff... (Being mostly sarcastic... Though grateful for the practice of my medic skills)

This is embarrassing to a Paramedic, we pride ourselves in getting it on the first "stick"

Oh well! Such is life when your veins are shot!

Well in all, I'm really really grateful I can do this myself, it saves money, gas, time, and I don't have to go into Seattle twice a week. Another great thing... I've gone 5 days without glutathione (usually I can only go 3 or 4), so I'm praying I'm starting to turn a good corner on fighting this Lyme. Till next time!