Search This Blog

April 30, 2011

Amazing Day

I am so happy to be feeling well today. It has been over two weeks of me feeling miserable and laying in bed 90% of that time.  My appetite has been lousy but these last two weeks have flown by because I slept most of it!  I guess I can be grateful for that.  


So today was fantastic. I wore my new birthday hat from sister Molly in Scotland <Thanks Mol!> and actually got dressed in real clothes, meaning I wore jeans and a real bra. Then I was greeted by my mom and sister with my favorite Starbucks drink.  We grabbed all my medicine in my diaper bag and headed out to get pedicures. More about my diaper bag another time...After pedicures we went shopping in a couple of stores.  I loved walking in and out of the store today because the sun was out and we had bright blue skies...I think Spring is finally here. 


My mom and Amy dropped me off at home and I hung out with my current caretaker, Kathi.  Side note, over the past two weeks my dad and step-mom left me at home with four crazy dogs to escape to the on a private sailboat with eight friends in the British Virgin Islands.  I am certain they would have invited me if I didn't have my picc line in my arm!  Anyway, so I have been at home resting most of this time, but today with my spark of energy I decided I would redo the guest bathroom in the house as a surprise to them.  I am really hoping they are not reading this during their day of travel so it doesn't ruin the surprise.  


Over my time of living with my dad and step mom I have learned many things about them including the fact that they are so sick of our guest bathroom being bright pink.  When we had four teenage girls in the house the bright pink was a decision that made sense. I personally still love the bright pink and I know Amy does too, but after all the complaining, the lipstick color has got to go. I think the bathroom is such an issue because the most visited room in the house is the computer room which happens to be just past the infamous bathroom drawing more attention to the eyesore.  


As a nice welcome home gift I decided to redo this bathroom in a nautical theme.  The pink is now 'sailboat blue' and has accents of an anchor, rope and other nautical accessories.  It is pretty much perfect for the house. So today Kathi and I went to buy some paint and started on a fun project.  There is no way I would be able to accomplish this on my own, but she had the energy and the drive to help me so we are going to have it all done before they get back tomorrow night!  All in all, I had an excellent day full of energy and smiles.  I think days like this are a glimmer of what my future will be like after treatment and I am so excited for that time to come!

April 26, 2011

Birthday

My 23rd birthday is tomorrow and I have never been less excited for a birthday in my entire life.  I feel so pathetic because I don't want to celebrate because I am so low on energy!  




Well, today, my grumpy not feeling well self was kidnapped by a few friends and we celebrated my birthday.  We went to see an ultimate chick-flick, Water for Elephants, and then we went for a quick lunch at In-N-Out before the girls had to return home for Fania to go to work.  I had a great few hours out and spent the rest of the day catching up on sleep and resting in bed.  It was a wonderful celebration with some of my favorite people.  They showed me I am able to still celebrate and enjoy things in my life, even when it is for a short amount of time.



April 18, 2011

Thinking About Lyme Awareness Day

Today I am very low on energy and motivation for anything except thinking about my upcoming Lyme Awareness Day.  I was born and raised in Minden, NV and in my gut I know I was infected in this town with Lyme disease.  I had never heard of the disease during all my time searching for a diagnosis for what was causing all my strange symptoms.  If I had heard of Lyme, I would have diagnosed myself many years earlier.

With the support of my family, I am planning a Lyme Awareness day in Douglas County on May 21, 2011.  We will stand on the side of the highway wearing lime green (national Lyme color) with signs saying "Lyme Lives Here" or something else catchy.  I want to cause a commotion and hopefully be published by the local newspaper where my story or other Lyme sickies can share their stories to education the public.  I have heard from many, that Douglas County has outrageous numbers of people sick with Lyme disease, some are diagnosed and many are not.  I want to help those who are sick and have lost hope for getting better and encouraging them to research Lyme disease.

If anyone is interested in being part of this day, please let me know. I would love to have as many people as possible to draw attention.  The event is currently scheduled to run from 11am-2pm.

April 17, 2011

Sacrifice of Being Sick


Today I was hit with extreme sadness over the sacrifices I am making with being sick.  Justin and I had to end our lease of our adorable NW Reno house and start moving out this weekend. Financially it did not make sense to keep a house that only he was living in.  Now we are one of those couples who had to move in with our parents.  I always judged couples that moved back in with family and now we are one of them. 

Sometimes, in a selfish way, I think about how much I am getting punished on top of my body being so sick.  Why did I have to get sick? Why couldn't my treatment be easier on my body so I could work and bring in income? Why is this treatment so long and hard? What did I do to deserve this? 

Easter is just around the corner and I am reminded of Jesus rising from the dead and proving that he was man and God in one.  When He was brutally beaten and died on the cross He said it was for all sin everywhere in the world.  Jesus will come back again and remove all sin everywhere, but until then sin can only be forgiven by accepting Him and repenting of our evilness.  

Everyone always questions, 'why do bad things happen to good people?' The answer I believe is because sin is present in this world and it caused genes to mutate, people to fall short and hurt one-an-other, disasters to occur, diseases to exist and pain to hurt all of us.  In a sense, me being sick is me bearing the fact that sin exists in our world.  My sickness includes all of the sacrifices I have to make and the pain I am experiencing. One day, I will be pain free and that is the day I go to heaven.  Even if I am able to win this battle against Lyme disease I will still experience loss and pain as more evidences of sin in our world.  

Being sick and going through treatment is so humbling and makes one thing for sure...I have hope.

April 14, 2011

I Love Hugs

All my life, okay the majority of my life that I can remember, I have dodged being hugged for fear of it hurting.  Now that my medicine is working and my most obnoxious symptom is getting better, I love giving and receiving hugs. As humans we are designed for the need to be touched by other humans and feel love.  I have deprived myself of this joy for so long and it is such a blessing now to be hugged!  

I do still have some pain in my back and the slightest touch will cause my body to twitch in weird ways, but that awkwardness does not outweigh my restored ability to share a hug!  

Some of the best huggers I know ;)

April 6, 2011

"But You Look So Good"


This photo was taken earlier this week. Me and Liv.
This is the hardest thing I have heard time and time again from those who do not understand my Lyme disease.  The past eight years I have been very sick but doctors, family or friends could not identify the distress my body has been under.  This disease is not like jaundice or chicken pox where your skin indicates the sickness from within.  This illness is much more hidden and displays itself through fatigue and bizarre neurological symptoms.  

The most deceiving thing about my disease is I look the same as anyone else only I am extremely sick on the inside.  I have antibiotics flushing through my veins nine hours each day, a limited diet, 20 pills to take, nasty drops and liquid medicine, time-consuming exercise regiment, the inability to drive or take care of myself independently, but, yes, I do look pretty much the same.

I love this excerpt written by my Lyme specialist because I feel like he really understands me and my sickness. 

The Biggest Challenge for People With Lyme Disease
People with Lyme disease are generally really sick, and have been this way for a long time, but their families, doctors or friends sometimes don’t believe that they are unwell and their insurance companies often won’t pay for their care. As a result, they feel isolated, as if they have been living in a twilight zone, or are going crazy.  So they develop a mistrust of others, and even themselves, and they start to question whether they are legitimately sick.  The second-guessing and this burden of guilt that people develop from being so pushed aside, is the number one most difficult aspect of having Lyme disease. But truly, people with Lyme disease are some of the sickest people on the planet, and treatment regimens are some of the most complex that I can imagine in medicine.  I have had patients on up to fifty different medications and over one hundred and fifty herbs at different times during their treatment.  Treatment regimens are so complex, but often, Lyme patients can’t even cognitively “get it together” enough to listen to instructions about what they need to do to get better.  They aren’t healthy enough to manage their own care, but the only way to heal from Lyme disease is through a lot of self-management, so they are stuck in all of these catch 22’s, and there are just a few ways out.  So it can be very beneficial to have friends and family members who can help them through it all.”
- Dr. Steven Harris, M.D. Insights into Lyme Disease Treatment

April 5, 2011

COMMON QUESTION: What is my life like post-diagnosis?

So I was diagnosed on November 9, 2010.  The first month of my treatment I was on a common antibiotic that caused me to be the sickest I had ever been.  I had to start a medical leave from my job and give in to the sickness of my body.  For so many years I was going by the "fake it 'til I make it" motto and now I had the amazing truth of all my weird symptoms actually having a name!

My doctor at the time told me I had to get worse to get better so I was just fighting the fight.  I was living in Reno at my adorable little house while my husband was in school and working 60+ hours each week.  I was alone and spent most of that first month on the toilet or in bed.  I lost 10 pounds almost right away and was so weak I couldn't shower on my own.  I remember talking to my one day and I told her how upset my stomach was. She was concerned and offered to pay for some groceries for me to help soothe my stomach. I told her finances were not the problem, but making it to the grocery store was the real problem.  I couldn't stand or walk much less drive! I was sick and not safe to be home alone.

Me with my amazing and supportive husband <3
It was at this point that my husband, Justin, and I had a very difficult conversation.  We decided that I needed to move in with my parents house while he continued his schooling and work, not to mention he was leaving for Peru in a week and I was going to need a lot of support during his four week internship.  The next couple of days were spent preparing to move back in with my parents (NOT an easy decision to make, but a necessary one).  With a couple of extra eyes on me, my parents began to see how sick I really was.  After only a day or two they had me back in to see my doctor to switch my medication around.  I was only tolerating one saltine cracker each day and felt so weak.  The doctor ordered for me to get my first picc line (a line that is inserted by a radiologist in the inside of my arm with a 40cm line that goes almost into my heart) and this allowed my medicine to bypass my stomach so I could eat food more regularly.  It took me a long time of forcing myself to eat three meals each day before I was much healthier.  I was even offered medical marijuana to help stimulate my appetite.

I also started physical therapy in my house from a local home health company (Yes, this exists and it is amazing!). I did simple exercises that helped me to regain my muscle strength.  I had a few sad moments in my early treatment, like my only day Christmas shopping was spent in a wheelchair getting all sorts of judgemental looks. I also did not have my husband around when I was so nervous about my picc line procedure because he was still in Peru.  All in all, I made it through the first two months.

Justin came back home on Christmas Eve and he spent quite a few days getting used to my new medicine routine. It was much more complex than my original few pills each day.  I now had a nurse visiting me each week, I did infusions in my house and I was able to be a little more active.  We had a family discussion and all concluded that I made so much progress during the time Justin was in Peru that I needed to stay living with my parents where there were so many more family members around to keep and eye on me and help me stay on track with my medications.

This is my shower chair.  I am in love. Ha ha!
Fast-forward to the current time...I am still using a shower chair because I get really light-headed in the shower with all the medication my body has in it.  In addition, my reaction time is slower than I feel safe to drive with.  I am still living with my parents and don't see this ending any time soon.  I have not worked since November and I miss my job and work family so much. I have a new doctor in Redwood City, CA and he has been wonderful to me. I was prescribed a workout routine for me so I started doing private pilates classes every four days to help build my body up slowly while the medication is breaking it down (Side note - with Lyme, any cardio is not allowed, it actually can make a person much sicker). Also, I am infusion medication about nine hours each day and taking so many oral medications. Justin and I are still living apart and we see each other twice each week.  I am still sleeping a lot each day and my symptoms change at a moments notice.  I can no longer predict my body, which makes it extremely challenging to make plans with anyone.  All the people who spend time with me have had to learn that I am way better to make last minute plans with than making a date on a calendar (this is the opposite to my A-type personality...I used to love scheduling things!).  Oh, and I even own an IV pole to give myself some of my medicine!  It was so funny when I got it...I keep making jokes that I want to pole dance on it when I get better!

The biggest change in my life, above all, is the mentality to feel productive after doing only one thing each day.  Sometimes that is going and walking around Wal-Mart or sitting in a coffee shop with my mom and talking, or on a really good day doing a craft project.  It is no longer a reality to do more than one thing each day! This is incredibly humbling~

April 4, 2011

COMMON QUESTION: What is Lyme Disease?

Age 14: When I started having symptoms
So many people do not understand what Lyme Disease is. In fact, I had never heard of it before I was diagnosed.  Lyme gets its name after Lyme, Connecticut, no it has nothing to do with the citrus fruit or the build up in your shower.  

Basically, there were a ton of sick people in this town and they connected everyone to having the same bugs in their bodies (Borrelia burgdorferi).  These bacteria, known as spirochetes, are transferred into the body by deer ticks.  The tiny critter, which is the size of the period ending this sentence, finds its way onto a person or animal and backwashes (ew!).  During the process of filling its belly with delicious blood, it shares bacteria with the human or animal it is preying on.  

Many ticks bite people but only some of them carry the bacteria that cause Lyme disease, however most ticks share some type of bacteria with their prey.  In my case I was given the borrelia burgdorferi (Lyme), babesia, and bartonella.  The second two are known as co-infections and are hard to kill, but not nearly as stubborn as the Lyme.  So basically, I had three different species of bacteria partying in my body multiplying and penetrating my brain, nerves, and tissues for the past 8 years. 

And if you are thinking..."what were you doing when you got infected?" The answer is...I have no idea! I have never really been an outdoor girl.  Eight to nine years ago I was playing soccer, went to summer camp, but most of my time was spent inside doing art projects and hanging out with friends (not a typical Lyme victim, but somehow I was bit so I finding a purpose in that.  Oh, and yes I am still extremely grossed out to think of a tick backwashing into me!  


The four stages of a tick. 
Let me dispel a few myths for you: 

1. Lyme is all over the United States and all over the world.  The infected ticks are not quarantined to specific states or countries no matter what doctors or the CDC say - more on this controversy later.

2. The red rash that supposedly occurs after being bit by an infected tick only happens for a small number of people.  (Even if you were bitten and did get a red rash, you may have it in an area on your body that you wouldn't see like you scalp or genitals.)
3. Ticks are tiny and their bites are painless. You rarely will see them-see picture.  The tiniest ones do the most damage from what I have learned.
4. Douglas County has really high numbers of infected people...if my story sounds anything like yours, you might want to consider being tested.


P.S. I do not claim to be a scientific genius, but I am trying to understand this disease to the best of my ability. 

April 2, 2011

THE MOST COMMON QUESTIONS: What was life like before your diagnosis?

I get asked the same questions over and over again by friends, family and strangers who want to understand my disease better.  The most common one by far is "what was life like before your diagnosis?".  This was my life...

I was a wife, mom to two dogs, had a full time job and slept about 14-18 hours each day.  I could never get enough sleep!  I was always failing in one area. If I was good at work I would be a horrible wife or a horrible student. This was so sad and frustrating as someone who puts 100% into everything. My 100% was not good enough.  I would wake up and take a shower and want to go back to bed.  I had been to MANY doctors in the Northern Nevada area and no one knew what I had. They gave me simple answers like it was all in my head or I needed to take medicine to manage all of my bizarre symptoms.  I would take seven pills each day and two-three of them had side-effects that sometimes did more harm than help.  My symptoms consisted of really weird sensation to touch on the back of my body.  The slightest touch on my back would cause me to burst out in tears uncontrollably...because of this I avoided hugging people. I would get so anxious when it came time to meeting or leaving anyone because I hated the dreaded hugging part.  I never knew if I would be in pain so instead I would leave or greet someone and come off a snob! It was the better of two evils at the time.  The hardest thing about this weird sensation on my back was some days it would be so bad and painful that I couldn't even wear clothing. I would have to call into work or cancel plans because I couldn't get dressed! How ridiculous, right?!

Another strange symptom I had was the nerves in my eyes didn't work together.  I took one medicine that helped to dumb down the nerves so they could work together. While I was waiting for a diagnosis I had to stop driving and get rides everywhere because I couldn't tell if cars were moving into my lane or what was going on.  I included a video of my eyes when they were bad.  If you look closely at my right eye it "jumps" when it tries to track my finger.  This slight movement of my eyes not working together made life miserable.

I also had some weird things, like my body was extra sensitive to medication. When someone my size would take 200mg of a pill I would respond to 50mg of the same medicine.  Doctors looked at me like I was a freak. It was embarrassing that I could not take normal people medicine and have it work for me.

Close to the time I got my diagnosis, I lost my balance. For work and play I would wear heels all the time because I am so short.  One day I woke up and I just couldn't walk while wearing them.  It was so depressing.  I had laid in bed so many days thinking if my body continues on this path and my back sensitivity continues to spread, it won't be very long until I am stuck in bed or in a wheelchair.  When I lost my balance this truth was quickly becoming a reality.

Something to keep in mind as I disclose my story and my life with Lyme - not all Lymies are created equal.  This disease attacks the nervous system and it doesn't ever act the same in people. The list of symptoms for Lyme disease includes almost any symptom you can think of. The best way to find a person with Lyme disease is look at their symptoms and see if it can all be traced back to the nervous system of the body (this includes that brain and everything else). A blood test is the true determinate of Lyme disease.

I'M EXPOSED

My first infusion in the Infusion Center.
I have been diagnosed with Lyme Disease since November 9, 2010...approximately four months.  My life has been twisted upside-down with this diagnosis.  Really early on in my treatment I was encouraged to write a journal, keep a diary, log my symptoms and none of these were appealing to me...until now.  I think I am finally at a point where I can share where I am at with all this disease has to offer.  Give insight to my friends and family on how I am handling all these changes in my life.  I have never really been much of a reader nor a writer and it is even worse with my "lyme brain" or as I call it "brain fog".

This blog is going to be very challenging for me to expose myself to the world and be okay with showing my unclear thinking patterns and poor word choice because it is a process of me not trying to impress you or anyone else reading this, but really to track my progress and push myself to get better.