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September 27, 2012

Battle Scars and Motivation

Don't worry, that is betadine...and I'm
 not naked! Lol!
It's been a while since I had all my picclines removed, but I still have scars on the underside of my arms.  I feel like each of my scars are battle wound that show how strong I am.  To date, I have had seven picclines and one power port. I did 13 months with seven picclines, then my powerport since February. This disease has left me with a lot of physical scars and emotional scars, but above all it has shown me how strong I am.  The scars on the insides of my arms are healing really well and are really only noticeable if you are looking for them. I had a hard time taking a good picture of the piccline scars...which is a good problem to have!  The first picture you see, is a picture of my port when it was de-accessed and cleaned earlier today by my nurse (the stuff on my chest is a betadine, not blood...I know you were thinking it, Brandon! lol). Then the second picture of me is when I showered and put on make-up for the first time since my sisters wedding (6 weeks or so).  I assure you I've showered, but haven't done anything about dressing nice or putting on make-up since then. I enjoyed a nice outing to the world famous JT Basque restaurant in Gardnerville, NV.  I ate really well and successfully wore myself out in just a couple of hours.

Me heading to the JT.
Then the next day I attended a baby shower for baby Walker. Here is me holding him soaking in all the baby loves I can.  I look at this picture and it gives me motivation to get better and lose my port (right by Walker's head) so I can have my own bundle(s) of joy! I'm not sure if that is a year away or three years, but hopefully my time will come soon! I love babies and can't wait to have my own!

Lately I've been comparing myself to a lot of my friends who are completed with college, buying houses, working in their career, having babies.....and I am learning a very different lesson and my timeline is very different then my friends and family. I hope one day I will be able to look back on this time and understand it better.

Here is me holding three week old Walker.

In other news, I've been thinking a lot more about getting a tattoo.  I love dark tattoos on people with darker skin and I love white tattoos on people with white skin.  I love this shoulder piece because it is so subtle and can easily be covered up for work.  All growing up my mom has been a "doodler", which doesn't really explain how cool her art style is.  I will incorporate my power-port scar to be incorporated into this tattoo. I think I will also add in scripture and other little things into the feminine tattoo. I'm hoping my mom with help me design it in the future. I've been thinking about this for a long time and know I will get it as one of my celebrations when I am done with treatment.  I have so many things to look forward to!

September 25, 2012

I Am Grateful Today

Today has been a hard day.  My port was de-accessed, cleaned and re-accessed just like it is every Tuesday, however, I am experiencing more pain with each needle dressing change. I have had a lot of pain, nausea, some blacking out, just overall blah. But, I am right on track with feeling like crap as the full moon comes closer.   In a previous post, I mentioned how crazy the full moon can cause all sorts of bizarre symptoms. For the second day in-a-row I haven't really made it out of bed all day. Today has been extra rough because my pain and nausea are up, but that does not stop me for being grateful for the life I have and the support from friends and family.

Sometime in our early marriage, Justin and I had a pastor speak truth into our relationship.  He taught us we needed to be grateful for the life we have and give thanks for everything even when we can't find the positive in the situation.  This is so key to understand, particularly with a sick spouse or a difficult life circumstance it is important to think positive because none of us deserve the life we have.  Jesus died on a cross and took on all the pain and sin we deserve and he washed us clean...meaning there is eternal life for those who believe in Christ Jesus.  For me, especially on hard days, I try to remember this verse in Ephesians 5:20: "And give thanks for everything to God the Father in the name of our Lord Jesus Christ"

Here is my dad in Miss Deon the Neon.
This verse specifically says to give thanks for EVERYTHING. All the good and all the bad.  It seems so strange, but it is so relieving to think this pain and sickness will not last forever.  I will have a day when this is going to be better.  Either because I will die and go to heaven or because I will beat this disease and enjoy life to the fullest!

Today, I have one huge thing to be thankful for! A new car that will keep me safe and will be a great little car to re-learn how to drive again in.  I have not had my license taken away from me, instead I just listened to my body and knew that if there was a pedestrian, my brain signals would not make it to my foot in-order-to put on the breaks before hitting the poor person in the crosswalk.

I have driven occasional short distances over the past 1.5 years so it is exciting I am even thinking about driving again. Thank you so much to my Aunt Robin and Uncle Dave. Also, thank you Dave Rikalo and Justin for driving the car down from Seattle for me.  Now when I feel safe to drive I will have a small car to do so in!

September 19, 2012

So You Just Found Out You Have Lyme Disease?

First of all, I want to share in you the now have an answer to all of your bizarre symptoms! When doctors told you it was all in your head or you were making it up, they were wrong! Mysterious symptoms that no one can really address actually have a root cause!  The answer is Lyme and if you have been searching for weeks/months/years it is so refreshing to have a name and reason for everything going on and everything you've been through.  You are not crazy! You have Lyme disease!

Now, I want to tell you this is not going to be an easy ride.  It is extremely scary and the medical community often doesn't recognize Lyme disease. I am so sorry that you have become a fellow Lymie.   Please know that you are not alone! There are hundreds to thousands of people online and all over the country who help each other through this treatment. You need to know that this disease is extremely controversial and expensive.  But, again, you are not alone and you will get through this battle.

Here is Information I Wish Someone Told Me When I Was First Diagnosed:

1. This site will provide you with a lot of educational resources that are trusted by the Lyme community.  The Center for Disease Control (CDC) and Infectious Disease Society of America (IDSA) have not supported the Lyme community well so be careful where you get your information from.  As you or your loved ones begin to read and educate yourselves on Lyme you will find some big gaps in treatment protocols.

2. Find a Lyme Literate Doctor (LLMD) through the Lyme Disease Association Doctor Referral Program. The Lyme community is very protective over these doctors because many of them have faced time in court/jail fighting for providing necessary patient care.  Most of these doctors do not accept insurance so they can go by what is best for you (the patient) and not by what insurance says is the proper treatment (max of 1 month of oral antibiotics....this is not enough if you were infected over two weeks ago). The doctors you will be linked to may require you to jump through some hoops to make sure you are legitimately looking for a LLMD. You will be grateful for this process down the road when your doctor is being protected from others.

3. If you haven't already, make sure you get a positive lab test from Igenex. A doctor will need to order this for you and your LLMD will have no problem with this.  Often they will order it for you so you have the results before seeing them in their office for the first time. The test is very expensive, but it is SO important to get the clinical diagnosis to get any help from your insurance. If finances are a huge struggle for you there is an organization that is hoping to help people nationwide get diagnosed.  The patient must show true financial hardship based on household income and insurance status.  You can learn more about The Lyme Test Access Program (Lyme-TAP).  I believe Lyme-TAP reimburses you after you pay for it (if I remember correctly the test is around $900 out of pocket). It is expensive but EXTREMELY crucial for proper treatment. Labs like LabCorp and Quest offer Lyme disease tests, but those are only reliable if you have been bitten recently (about two weeks). It is important to know the bulls eye rash that is so stereotypical of Lyme disease only occurs in 40%? of cases, I can't remember the exact statistic, but just know it is not a reliable indicator, especially because you could be bitten on your head or genital area where you would never see it. One Lymie reported seeing the statistic only about 15% of cases will see BOTH the tick and the rash (something to consider).

4. In the medical community there is no one way to treat Lyme.  So many factors go into treatment including when you got the bite (if you know, many don't), how far back your symptoms went undiagnosed, what else is in your body like co-infections and/or parasites that are compromising your body even more, your personal philosophies, etc.  Insurance does not cover the majority of most Lyme treatments so you must choose a doctor whom you can trust and a treatment plan you can agree with. Some Lymies choose to go a natural route using herbs and tinctures for treatment, others use Western medicine of antibiotics and some Lymies choose a combination. There is a program, Bridges to Access, that can help cover medications if you qualify.

5. In order to recover from Lyme you will have to do a lot of detoxing to rid yourself of the toxicity. Look up any or all of these things to become familiar with what is available to you and what your LLMD may recommend for you. If you don't not believe it will work for you, then it won't work for you so I strongly recommend having an open mind when told to do a certain treatment like: Far Infrared Sauna, Hyperbaric Chambers, Rife Machine, Epsom salt bath, Moore mud bath, Foot Detox Bath, Dry Brushing, Lymphatic Massages, various cleanses, Colonics, Coffee Enemas, Valkion, Earthing, etc.

6. You may also need to eliminate foods that make detoxing more difficult. Generally, it is a rule to eat plenty of organic fruits, organic vegetables and organic clean meat. Dairy is a problem for some lymies as well as gluten.  No two people are the same so it is best to talk to your LLMD.

7. Lyme treatments can take months to years. Some people are able to work through treatment while others are unable to do so. If you are needing help paying for your medication you should check out NeedyMeds. This site is a great resource of all the medicine assistance programs by state and nation wide that are available.

8. There is differing opinions on whether Lyme disease can be passed sexually and also from mommy to baby in utero.  It is my personal opinion that this can happen as I know Lymies who are living with these instances right now, but the medical community hasn't done enough research to make it official.  My advice, use protection and do everything you can to not get pregnant. Better safe than sorry.

9. Another thing you should know is Lyme has extremely high suicide rates of people who are diagnosed.  I think this is mostly from having unrealistic expectations about the treatment. Don't be a statistic! You can beat this disease! I hope and pray your friends and family rally around you to support you in the marathon of a treatment (not a race).  You will always have the support of the Lyme community who you can find on Facebook like Lyme Disease 101, Tired of Lyme, Lyme Teens.

10. I hope this list helps you as you begin your journey. I encourage you to read other postings in my blog and other Lyme blogs, but don't consume yourself in Lyme. Do not let Lyme define you. You are a wonderful person with so much more to you than being sick.

But You Look So Good
What is Lyme Disease?
- Getting the Word Out
- Battle Scars
- Infrared Saunas Are Great for Lyme
- My Compilation of Lyme Friendly Products
- Another Lymies "Lyme Kit"
- Heavy on my Heart
- Secret About Sickies
- Double-Edged Sword
- Update and Understanding My Port
- All in One Place - Lyme in the Media (Books, TV, Movies, Documentaries)

If you have anything else to add or information you would like answered please post a comment and I will make changes. 

September 16, 2012

All roads point to Lyme

This is me, 18 years old, just before my symptoms snowballed
My Lyme story is not unique. It is actually very similar to other people diagnosed with Lyme. In the documentary Under Our Skin it is mentioned that a majority of people with Parkinson's, Alzheimer's, MS, Fibromyalgia, Lou Gerugs disease actually came up positive when tested for Lyme disease. The more I meet people who have been misdiagnosed and undiagnosed for many years it makes me think that the same bacteria that causes Lyme could be the culprit for many other diseases too. It has made me strongly wonder if the medical community has grouped similarities and called them all various diseases. All of these things have one thing in common: they stem from the nervous system. It's not to say that these diseases do not exist but I do think it is very interesting and something to consider. Here is a list of all the symptoms Lyme can cause. I think you will see why it is often diagnosed as other diseases because the Lyme bacteria can cause so many symptoms. It is important to note that no two Lymies are the same and even people with similar symptoms are never identical....the common thread is where the symptoms come from. If your brain controls it, it can be altered by Lyme. Symptoms caused by Lyme: Brain fog, Insomnia or excessive sleep, Memory loss (short and long term), Joint pain/swelling/stiffness, Poor coordination/ataxia, Difficulty reading, Slow or slurred speech, Unexplained chills and fevers, Rash, Sudden abrupt mood swings, Continual infections, Poor concentration, Decreased ability to spell correctly, Tremors, Disorientation, Burning/stabbing pain (I find this symptom especially in my clients feet), Facial paralysis(Bell’s Palsy), GI distress/abdominal pain, Poor word retrieval/Aphasia, Shortness of breath, Anxiety, Heart palpitations/chest pain, Difficulty swallowing, Sore throat, Swollen glands, Nausea/vomiting, Anorexia, Cough, Vasculitis, Muscle pain or cramps, Loss of muscle tone, Changes in taste or smell, Twitching of muscles (face or other), Obsessive-compulsive symptoms, Panic attacks, Changes in cerebral blood flow/brain waves, Peripheral neuropathy/tingling/numbness, Number reversal, lightheadedness, Headaches/migraines, Light sensitivity, Menstrual irregularities, Change in hearing/buzzing/tinnitus, Trigeminal neuralgia(TMJ), Unexplained hair loss, Dilated cardiomyopathy, Visual disturbance, Loss of temperature control.

For me I had bizarre sensations to touch, especially on my back. The sensation started when I was about 14 right under my shoulder blades and continued to grow and expand across my entire back and even around my sides. The sensation is similar to someone with shingles. Only I never developed a rash and the pain never went away. I would avoid hugging people at all costs and some days I couldn't get dressed because it hurt so bad. When I was 18, I went through a super dark period of depression and I remember crying because my shoe wouldn't stay tied. That was a rough patch for me but I got put on another drug and continued with my life. Probably six months later, my eyes stopped working together. It was so hard to describe what I was seeing and I was scared to death to drive because I couldn't tell which lane I was in and which lane other cars were in. It was such a blessing when one of my doctors figured out my eyes weren't tracking together. It was awful. By the time I was 20 I had seen nearly every neurologist in Northern Nevada and had a referral to UC Davis. I had medicine for the sensitivity in my back to dumb-down the nerves, medicine for my eyes to work together, and depression medicine. None of the neurologists found anything as the cause to my symptoms and would just symptoms manage my pain and sensitivities. I had one doctor tell me I would never be able to have children because of all the medication I was taking. This was the last straw for me but I was more brokenhearted about never having kids than anything. I privately arranged to talk to each of my parents to tell them I would be able to give them grandchildren and cried as I told them the reasoning. For them, the was a huge wake up call. They knew I had pain and strange symptoms but never imagined it would impact my life like it was. They were in alliance to team up and get me the help I needed. We had to find the root cause to all these issues.  

My symptoms seemed to be getting worse as I was more stressed with finding a cure. I also had taken on a huge promotion and was full-time in school. None of these things helped, but I was able to manage my life enough to keep all areas of my life happy. Any moment I was not at work or school I was in bed exhausted and sleeping. I had no social life. I was giving 100% and was running out of steam. My boss was great though, because If I woke up and didn't feel safe to drive into work yet, he was totally supportive and would have me work from home and come in as soon as I could. One morning I clearly remember laying in my bed starring at the ceiling fast-forwarding my life and seeing that I would be stuck in bed in the next few years if my body kept going downhill like it was. I had to find a reason to all this.

A couple of weeks after that realization, my balance started being all messed up. I got out of my car wearing heels, like I had multiple times each day for the last two years, but this time was different, I couldn't quite walk right. All I could think was "You've got to be kidding me....I have to make it inside to my matter what." I used to be a gymnast and really thought I had good balance, until now. And when I lost it, I lost it fast. So I switched to flat shoes for work and just did my best. Later on that week I had another new doctor to see who would hopefully give me some answers. I didn't have much faith in her because I was really waiting for my appointment to get into UC Davis, but I agreed to let my mom and step-mom each take me to a doctor that "was a miracle worker" for someone else we knew. I walked into Dr. A's office with my big binder of test results, doctors notes, symptoms, and timeline. She sat down and looked over my stuff for about a minute. Then she very sweetly and softly looked me in the eyes and said, "Elizabeth, I want to run some tests, but I think you have Lyme disease." I had never heard of it before but she provided me and my mom with a little education and I left the doctors office crying tears of joy. I actually had an answer and it made sense! I started my Lyme treatment that day November 9, 2010 with oral antibiotics. We proceeded with the blood work through Igenex and I tested positive for Lyme. All my bizarre symptoms had a name! I wasn't crazy!  I was angry at my other doctors for not knowing about Lyme, but I learned that it is considered an "East coast disease" so most doctors aren't trained or educated about it, therefore, I couldn't be too upset with them.

The next thirty days were scary. I lost about 10 pounds because the medicine made me extremely sick. I couldn't leave my house. I remember a phone call with my mom where I told her I really needed to go grocery shopping and she assumed it was because I couldn't afford groceries so she offered to pay for them.....I told her it wasn't a financial issue it was that my body was so weak I literally couldn't get out of bed to go to the grocery store. I called in sick many days at work and finally just used FMLA to stop going to work. My co-workers didn't really know what was going on with me but they were all very concerned and everyone donated PTO to me so I would receive a full paycheck even if I wasn't working. It was such a huge blessing. As a family we all decided it was best for me to move back to Minden to live with my parents. We still had our rental house in Reno which Justin stayed in during the week to go to work and school and he would visit me on the weekends. I had multiple people helping me get my medicine in and helping me to eat regularly. As December rolled around I was Christmas shopping from a wheelchair. I was very sick, but finally everyone now understood. It breaks my heart that anyone else would have to go through this disease. Justin has told me many times that I can't just disregard years and years of medical research and not everyone has Lyme disease. I understand that, and I really agree. On the other hand, people all over the world go years without a diagnosis that have any combination of these symptoms and the one commonality between them is often the Lyme spirochete, Borrelia burgdorferi. I don't wish this disease or any similar disease on anyone.

September 14, 2012

How on Earth Am I Supposed to Sleep Like This?

I can't remember if I've written about all the things I am supposed to do each day as my treatment, but just now when I woke up I felt like I was in a comedy routine. I decided to draw some pictures for you of my last couple of hours. I was unable to show the castor oil packs, but just imagine the second image plus hot, oily itchy wool wrapped around my torso with plastic and velcro straps--it's pretty suffocating feeling.

So each day I am supposed to do each of the following (not including doctors appointments or anything else that happens in day-to-day life:
1. IV Antibiotic infusion
2. Eating 3x day
3. Taking pills 4x day
4. Making/drinking a protein smoothie 1x day
5. Taking binding meds twice (each require no food intake 45 min before or after drinking mixture)
6. Wearing oxygen while I sleep
7. Hydrating with water, ginger tea, and saline bags
8. Coffee enema every night
9. Castor Oil packs on front and back of torso

In this first image you see me here laying on the floor in my bathroom with my coffee enema hung up on a towel rack. The coffee has no effect on my sleep when inserted into my body this way so I find night time to be the best time to do it. I usually play on my phone or listen to sermons while the 8 cups of organic coffee are going in me. About every 5-10 minutes I roll over to encourage the coffee to make its way through my large intestine. Then when nature calls, I jump up and run to the toilet. It's like a 2 hour process and it makes me feel like a lab rat or something.....whatever the opposite of a sexy woman would be that's how it makes me feel. P.S. have I ever mentioned I AM SO READY FOR THIS PART OF MY LIFE TO BE OVER?! Well, in case I haven't there you go.  Then...

When my enema is done, it is bed time. My husband can fall asleep pretty easy but I've still got a lot of stuff to do. He usually helps me set everything up but the he falls asleep and I'm on my own to wake up to remove the castor oil pack, take more medicine etc.
Here you can see my IV pole with saline drip that connects to my port, my oxygen concentrator that makes annoying noises constantly, my cell phone frequently going off to tell me to take medication or drink a binding med drink. I have so many tubes and wires and straps on/around and near me I find it nearly impossible to sleep. So even though all this is crazy I am actually happy to do it, first because I think it is working overall and two, I get to share all my bizarre treatment with everyone. I'm going to return to this madness and try to go back to sleep. I'm thankful I have my knockoff snuggie to keep me warm and as comfortable as I can be!

September 11, 2012

Guest Post by Someone Who Loves Me

This week I have the privilege to share with you a guest post from someone very close to me who wishes to remain anonymous. This person is someone I hold very close to my heart and am honored and blessed by what was written:

I have watched Elizabeth in many roles. I have seen her take her vows to become a bride, as a friend, as a devoted follower of Jesus, a daughter, and a sister. I also , unfortunately, watched her in the role of someone fighting Lyme's disease. I observed as she was told by multiple doctors things ranging from the possibility that there was nothing wrong with her to the possibility of a pituitary tumor. I remember that the idea of a brain tumor was in some ways comforting to her because it would mean that there was something wrong, something concrete, and finally an explanation to prove that she was in no ways making things up. 

I wrongly hoped that her experience was unique and that others did not have to face the same obstacles as her. After watching the documentary Under Our Skin, following others seeking or undergoing treatment for Lyme's, I realized that Elizabeth was sadly, far from original in her battle. After watching this documentary, Elizabeth asked me to share with her blog readers an outside perspective and reaction to the Lyme's battle and controversy. 

I was shocked at the battle surrounding the treatment and diagnosis of Lyme's. I would not have believed the intensity of our medical community's reactions to the illness if I had not seen this documentary and seen it in Elizabeth's journey. My hope is that through better research, lobbying, and education that our perspective and understanding of Lyme's Disease will be expanded. Not only for Elizabeth, but for the future treatment of all individuals and families. 

2006 I was desperate for an answer to what was going on with my body.
I still don't view Elizabeth as a ''sick person''. She is battling Lyme's Disease, but she is so much more than that. I know that she will continue in her other roles and that those defining characteristics of who she is cannot be robbed or altered as she fights this disease.