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November 30, 2011

All I Want For Christmas is...My Lymph System to Empty

I recently saw my specialist in the Bay Area and was relieved with what he said.  He told me I was making good progress and had only one big thing holding me back, my lymphatic system. He told me my lymphatic system is completely congested and I need to work on emptying it...if I can clear it out I will be feeling much better.  I was so happy to hear this and left the appointment with a few things to do on my part.

1. Start stretching/exercising every day, but don't let my heart rate exceed a certain number to avoid the Lyme from crossing blood brain barrier.

2. Take all sorts of new homeopathic meds to help clean out my system

3. Continue infrared sauna (Did I tell you I own one now, I'm using it every other day pretty consistently)

4. Start dry brushing again

5. Change my diet..."if it's white it ain't right" this includes sugar, white flour, basically everything processed.

6. Continue with lymphatic massages

7. Continue drinking lots of water and doing IV hydration

8. Continue with coffee enemas / start colonics

I learned that my lymph system carries out a lot waste my body processes, and with all the drugs I've been on and bugs I've been fighting there is a lot that has been filtered through.  If I can get it to empty from my body I should drop some weight, but more importantly I should have way more energy! With enthusiasm to help my body shed all this crap, I took my measurements all over my body and wrote down my weight when I got home from my appointment and started implementing these changes.  It's been almost two weeks and so far I have noticed no progress.  I've done pretty good on all aspects of the new "protocol" except I am waiting for my heart monitor the be here today to start exercising better because I am scared to death to let the Lyme into my brain. But even cutting out 90% of processed food and sugar over the last week I have gained weight!  Ugh! My doctor assured me I had not gained much fat during this past year, but that it is mostly due to my completely full (think of a full sponge) lymph system. Needless to say I am discouraged, but I will carry on.

All I want for Christmas is my lymph to empty!  Never thought you'd hear that one, huh?!?

November 15, 2011

One Year (and a few days)

I have reached my one year mark of treatment and a diagnosis: November 9, 2011.  This past year has been one I never could have fathomed.  I have received more support from my family than I knew existed, I've been on over 70 different medications, become more in-tune with my body that I ever wanted to be and all to say I still have a long road ahead of me.  Originally, I was told August 2012 as a "done with treatment date", which is perfect because it would be in time for my sisters wedding.  But then, my body didn't totally  cooperate because we weren't able to identify all the bugs that were attacking my system.
Photo courtesy of www.harmonyhilderbrand.com


The war wages on, and I am trying so hard to be positive.  The truth is I feel a little beat up mostly because I don't see that I am moving forward, instead I feel like I am in a plateau.  I'm struggling with my friendships and I am having a difficult time knowing that this is the plan God has for my life. In Jeremiah 29:11 God promises, "11 For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future."  but a little voice inside of me keeps saying 'what good can come out of this'?


I have struggled with depression for a long time and I find comfort in knowing it is common for people with Lyme disease to also have this diagnosis.  I really think these thoughts are from Satan who is trying to weigh me down.  


I see my specialist this Friday and I am hoping to have a lot of questions answered.  I hope to walk out of there optimistic and with a plan.  


Above all, I guess I am just asking for prayer.  This road is a hard one, but it does not define me.  It cannot define me.  I'm just struggling to know who I am right now.  To my friends, I am sorry to drag you with me or neglect you.  Please know that it is not you but an internal struggle I am having.  I wish I could ignore it or make it go away, but the war wages on.


I started this blog to show you a piece of my life, and I think this entry is the most raw and confused one I've written.  But to you my followers, this is a twist of lyme.

October 19, 2011

Pushing Through Today So I Can Enjoy Tomorrow

Before I got my diagnosis, and I was extremely fatigued laying in bed I often thought about how scared I was.  I would lay there thinking "I need to figure out what's wrong with me or else this will be my life.  I will be confined to a bed, unable to care for myself, unable to walk, crippled and debilitated."  I could easily see my body digressing into a miserable state with very little quality of life.  I am so grateful I have a diagnosis.  Since my diagnosis I have spent so many days in bed, but I know if I push through today I will eventually come out the other side - a whole new human.  Oh I cannot wait to live my life without frickin' Lyme disease and it's accompanying co-infections!  


Here are the things on my Bucket List (in no particular order):


1. Wade in a cranberry bog (like the people on the OceanSpray commercial)
2. Spend a night in Safari West 
3. Swim with whale sharks with my dad and anyone else who wants to come - the day I am done with treatment is the day we book this trip! 
4. Be an extra in a movie
5. Get pregnant with a healthy, Lyme free baby (yes, I strongly believe that Lyme can be passed in utero.)
6. Repel down a waterfall
7. Go on a mission to provide medical care in Peru or some other country
8. Attend a game at World Cup
9. Learn how to use an espresso machine and make my own delicious lattes
10. Learn how to make jewelry 
11. Learn how to do a mosaic
12. Go white water rafting
13. Train to be in a Disney half marathon
14. Finish my BA degree
15. Zumba - I can't wait until I am allowed to do cardio...this looks like SO much fun!
16. Ride a horse (I rode as a kid, but I'd love to as an adult)
17. Get a tattoo symbolizing this obstacle in my life
18. Be an audience member on for a tv show
19. Go to a drive-in movie theater
20. Go whale watching and actually see a whale (it only took 3 or 4 tries!)
21. Fly first-class
22. Learn to blow glass


I have been sick my entire adult life.  I really don't know how to enjoy and live life to the full potential.  I can not wait to be a new human.  I will have so much energy that nothing will stand in my way.  Today sucks, like it literally is one of the worst days ever.  For the first time in my treatment, I am in excruciating pain all over my body.  The worst is the pain on the bottom of my feet - I can barely walk and the pain in my head/neck. So as I push through the awfulness of today I give thanks to God that I have a diagnosis and hope to enjoy the rest of my life.

October 11, 2011

Secret About Sickies


Long before I ever knew I was sick I heard of a special event for people who have cancer getting free makeovers to make themselves feel beautiful even with hair loss and all the treatment they were receiving.  I thought this was a wonderful idea and always remembered that great charity event whenever I saw a woman in public who was bald because of cancer.  I love the idea of embracing beauty and helping a woman to feel beautiful on her hardest, most sick days.  When a woman feels beautiful, nothing can bring her down!

I don’t want to downplay cancer at all, I think that treatment is very rigorous, but the truth is there are many “invisible illnesses” that exist in which the treatment effects woman just harsh as chemo.  These diseases include, but are not limited to, MS, Lyme, Lupus, ALS, fibromyalgia, etc.  These illnesses are called invisible because it’s not easy to detect them.  Most likely, someone with this diagnosis will appear tired, run down, often seen in their pjs if they make it out in public.  Others, who are having a good day, can be very sick, but appear completely “normal”.  You will hear of their diagnosis, but will not really understand it.  I saw a bumper sticker today that said, “Lyme…you will not get it until you get it”.  This is so true and applies to all invisible illnesses!

The point I am trying to make is, don’t limit the charitable makeovers only to women with cancer.  Last week, my mother-in-law paid for me to get a mani and a pedi as an overdue Christmas present.  Over the last seven or eight days I cannot tell you how many times I have looked at my French-manicured fingers and my bright pink toes and instantly felt a little better. 

Today has been an awful day, but I can honestly say I am so grateful for having pretty toes and fingers because it makes me feel beautiful.  I rarely have the energy to do my makeup, hair, or pick out a fierce outfit, but by-golly, while I sit in bed and fight my Lyme disease I am going to FEEL BEAUTIFUL and that is so important to the healing process. 

Please, I challenge each and every one of you to reach out to someone who has an invisible illness and buy her a new lipgloss, take her to get a nail treatment or makeover.   It doesn’t have to cost money, you could give her a manicure yourself. Seriously, you will make their month many times over because every time they look at their fingers or toes she will feel like the beautiful woman she is. You may not understand her diagnosis, but you can help her to fight a little harder in her treatment.  

September 21, 2011

Friendship is Important

Photo courtesy of my dear friend harmonyhilderbrand.com
My good days seem to be few and far between lately.  I will have a good hour or a good afternoon, but overall I haven't had very many really good days.  The day/night this picture is from is one for me to remember and compare how my body is doing.

*I had very little nausea, controlled almost completely by zofran.
*I had energy to laugh and help my husband prepare a delicious BBQ feast.
*I showered, straightened my hair, and even put on make-up (this takes so much energy!).
*I stayed up late laughing into the night enjoying the summer weather with a fire pit and great friends.
*I played a funny game and I think Alex and I even won!   It was a super fun night of catching up with the Johnson's who were in town from Kentucky and the Halls and Hilderbrands who we don't see nearly enough!
*I rejoice in the good times and am so thankful I could share an excellent day with such special friends.  *I love you all <3

September 19, 2011

Heavy on my Heart

Earlier this month was suicide awareness week and I have some thoughts that have been heavy on my heart.  I have been hesitant to write about suicide because I think it will stir up worry in those who know me. I hope my thoughts are clearly presented so you can see where my heart is. 


Suicide is something I take extremely serious.  In middle school I learned statistics about it and lost a few classmates over the years.  I served at a bereavement camp a few years working with kids who had lost loved ones to all types of death, including suicide.  In college, I took a class to know the signs of a suicidal person and how to talk to someone at a dark place in their life and do a suicide assessment.  I even have strongly considered volunteering for the Crisis Call Center in Reno, but because of my Lyme I have been too low on energy. Suicide to me is not a social topic to avoid, but to confront and understand.


Before I was diagnosed, I learned about the staggering statistics of people who are diagnosed with Lyme disease and the high numbers of them who take their own lives (I wish I could remember where I learned it).  I couldn't understand how life could get so hard, but now I can say with all assurance, I get it.  I consider myself extremely fortunate to have the support I do.  I am in a very healthy place in my life with understanding that I am very lucky to be going through my treatment with financial, emotional and spiritual support.  Without this support I know it would be very easy to slip into a place of deep darkness.  I feel for my fellow Lymies who do not have the support I have been blessed with. I hope to be supportive to those who have none to prevent someone from taking their life.  


I read a post recently from a fellow Lymie, they said, "Please tell me I'm not the only one who has the Suicide Prevention line on speed dial."  The comments that followed were supportive and I commend those people who are reaching out.


Here's what I have come to understand about the connection between Lyme and suicide...Lyme is not recognized by most doctors, many insurance companies, and is extremely controversial in the medical community.  There is no clear cure for Lyme. Testing and treatment are expen$ive! Most people with Lyme can not maintain a job.  Relationships are tested and many do not survive. Fighting Lyme is a marathon not a sprint.  No one knows if the finish line will be four months away or ten years away. What works for one person likely will not work for someone else. It is complicated, frustrating and scary.  The disease is painful. Mixing all this up over a period of time and it is a recipe for a person with Lyme disease, who feels awful, to see suicide as the only option.


Fortunately, there are organizations that want to help: 


National Suicide Prevention Lifeline 1-800-273-TALK (8255): Suicide hotline, 24/ 7 free and confidential, nationwide network of crisis centers.




www.save.org


Suicide AWARENESS Voices of Education







www.postsecret.com



Post Secret encourages people to send in their secrets via postcard or electronically through their app.  Don't keep your secrets to yourself. Get it out there. Confidentially. No one has to know it came from you, but please get it off your chest.




Thank you for reading...this blog has been weighing on me for a while...

September 15, 2011

My Compilation of Lyme Friendly Products

With a diagnosis of Lyme disease comes so many bizarre and strange symptoms that I couldn't even make up if I tried.  When a new symptom comes on I troubleshoot a lot to get it to go away.  The last thing I ever want to do is check myself into the ER and have the staff there fight with me about my Lyme disease treatment (For those of you who don't know, Lyme disease is controversial in the medical community. I recommend watching "Under Our Skin" if you are interested in learning more). I thought I would compile the products I have grown very fond of over the last year.


1. Alka-seltzer GOLD is magic for heartburn or stomach problems.  Regular alka-seltzer did nothing for me, but the GOLD made it magical in helping my symptoms.  My pharmacy did have to special order it, but the pharmacist was so great and even called me when it arrived at the store. It is an over the counter medicine and pretty cheap.

2. Coke. I am not a soda fan, but I have found on top of my zophran and all the other nausea medicines, this dark soda works to help me with the over drive of nausea about 7/10 times. I go to McDonald's and for $1 I get the largest soda they have!  It costs me a lot in calories, but I am able to get through the day usually if I have a fountain Coke.  (P.S. cans or bottles of Coke do not help me...something to consider for yourself...also, this is not a lasting solution for me and over time I cut it out of my life for a while and then try it again. When it works, it works well and when it doesn't, well it is a waste of empty calories.)

3. Castor oil. Castor oil is used in castor oil packs, which are flannel soaked in the oil applied over liver or kidneys, covered with plastic and topped with a heating pad for about an hour.  This helps the organs detox, which is important when there are so many drugs going through someones body.

4. Organic Coffee Enema. Yes, this one is gross, but oh my heck does it work!  First, buy disposable enema bags, I had to order them on the internet.  Once each week I brew about six cups organic coffee, let it sit out to cool it off to room temperature. Pour it into the enema bag...then start the enema.  You can research more details about it online. There are plenty of tutorials for this process. I recommend making your bathroom floor as comfortable as possible with a few towels.

5.  Epsom salts in bath water. These are general detox for the body.  Dump some epsom salts in bath water or shower water if you let the bath tub fill up a bit.  Let your feet soak.  This is one of those things that I'm not quite sure how it works, but it's cheap and can't hurt.

6. Calm powder. I have had some heart palpitations and anxiety over my treatment and I found a lot of success drinking this.  I happen to love the taste of the raspberry-lemon!  It tastes good hot or cold with ice. It has a lot of magnesium in it that is beneficial for a depleted body.  It's fine to drink on a daily basis too. Mmmm...I'm craving some now.

7. Oxy-powder. I have a few friends who are detox junkies and I guarantee you this is the best detox ever.  Forget all the grocery store detox products, this one regulates chronic bowel irregularity, cleans out the colon, and in the process most people lose weight.  This product uses bursts of oxygen to clean out the digestion track. Make sure the week you start this product, you are close to a bathroom and fairly mellow!

8. Hydrogen peroxide in bath water. I recently started doing this one when I have huge sweats from detoxing.  It is supposed to kill off anything that seeps out of the pores (parasites or whatever) because they can not survive in H2O2.  Again, I'm not totally sure if this one works, but it's cheap and doesn't hurt anything. I have learned that I can't do this one frequently because it dries out my skin really bad.

Added November 2012 when I found a new product to add to my favorite things for Lymies**:
9. The amazing Spoonk mat! It is a stress reliever and muscle relaxer along with many other things.  As a Lymie I am no stranger to stress, muscle tension and anxiety. I also could benefit from being energized and rebalanced when I get easily overwhelmed.  All these things can be helped by one brightly colored mat that can be used any time of the day for any duration of time and it takes no effort except unrolling it and laying down or placing it behind you! The mat uses the same theory as accupressure by stimulate nerve endings and stimulate blood flow.  It takes a little getting used to and I learned I have to commit to a position and not toss or turn or adjust once I'm on it.  It has over 6,000 white sharp stimulation points on it, and guess what, it's amazing! This is coming from me, with the uber sensitive back who at one point couldn't put a shirt on because it caused too much pain!  I have been so happy with my Spoonk mat and I am certain you will find it helps you in many ways as well.  Oh, and I'm not the only one in my house who loves it, my husband has been caught sneaking it to try it out! He loves it too and is definitely is a fan.  Check it out at http://www.spoonkspace.com/home. It was featured on Dr. Oz and sells on Amazon for $40 - $70 depending on the color and size.  They make a travel size as well to take in the car or whatever. It's very versatile and I think everyone needs one. It's become my go-to for almost any ailment or stressful situation. All this to say I give my Lymie stamp of approval on the Spoonk!


PS I am not a doctor or health expert. I am also not being compensated to endorse these products. Please make your own health decisions and consult your doctor before adding any new medicines, supplements or products to your health regiment. I am just a Lymie who has done some research for my own body and wants to share what worked for me :)

**I was promised a free travel size Spoonk mat for reviewing the standard size Spoonk mat, which I purchased, but I would have added it to this list with or without the incentive :)

September 4, 2011

Ten Months of Treatment

The last ten months have been extremely hard on my body.  I have followed my treatment by not doing any cardio, eating as healthy as I can despite feeling nauseas nearly every day, giving up drinking any alcohol, cut back on my coffee intake, and didn't let my body get tired by resting often and for long periods of time.  I feel like I have given it all I can.  Recently, a fire was ignited under me to kick this disease with more gusto then before.  I've committed to two lymphatic massages each week, weekly counseling, infrared saunas multiple days each week while maintaining my intricate medication regiment.

I keep thinking about how I have been off work since last November.  I feel like I have worked harder this past year than I ever did in school or in work.  Fighting a disease is stinkin' hard work!

I know battling these bugs will be worth it one day.  I want to have children one day and have the health and enough energy to keep up with my munchkins.  It is so exciting to watch some of my closest friends be pregnant and prepare to be moms, but part of me cannot help but be jealous.  I want to be in that place in my life.  Unfortunately, God has another plan for my life right now.  I am learning to be patient.  One things for sure, this disease does not define me, it does not have control over my life, and I will come out the other side!

September 3, 2011

Infrared Saunas Are Great for Lyme!

Yesterday I had an adventure to say the least!  I have been reading and researching the benefits of Infrared Saunas for treating Lyme disease.  I wanted to try one a few times before I invest a nice chunk of change on this large device.  I had a very difficult time finding one, but finally found an reverse aging clinic that offered saunas in northern Nevada.  I knew going into this place that it was going to be a little "woo woo" meaning natural-path type healing and I may be skeptical as to if it will work.  My good friend Harmony agreed to take me on our Friday Friend-sitting day so off we went.  This clinic that I found had the saunas and had other equipment that you could use too for the one day price.

When we walked in we were expecting to be greeted by someone very calm and see everyone in the "spa" walking around in white robes.  This was not what we experienced.  A very nice woman greeted us, told us to drop our bags on the floor and take a seat in massage chairs.  We hardly got introductions when we plopped down and had our feet on devices that send electrical pulses through our feet...it tickled so much and our toes were curling uncontrollably!  It was so funny. Then she introduced us to special tea from the Amazon and alkaline water.  I loved the alkaline water but I couldn't finish my tea...blek!

Next,  we had the opportunity to stand on these devices that had a moving plate that you stand on and it shakes back and forth very fast.  The woman told us this device was like doing ten exercises in one.  As we stand on this vibrating machine every part of my body that is flabby is slapping back and forth...this was hilarious too.  Harmony was able to engage her arms and legs while on the machine.  She did squats and free weights while standing there.  I just stood there and allowed my body to flap while trying to keep my body tight to benefit from the "10 workouts in one invented by NASA". I should mention, neither of us is sore so it probably is not a real workout device.

Then we each took turns laying on a hard mattress with infrared plates over our organs and our feet in a light spinal alignment device.  This machine put me to sleep almost because it was so warm.  Well one of us was laying down the other person was sitting with a belt around our waist.  The claims about this machine are "you can turn on a lightbulb with your negative charges going through your body (we actually could, kinda cool) and it was invented by the man who invented the EKG machine".  On this machine I felt nothing and didn't see any benefit of doing it, but whatever.


By this time we have been at the spa/clinic for about two hours.  We then decided to forego the water massaging bed and head straight to the sauna, after all that's what I came for!  The sauna was fantastic we sat down and set it to the temperature my doctor recommended.  We stayed in for thirty minutes and got an amazing sweat.  I could easily see doing this treatment every day for 30 minutes to an hour followed by a cold shower.  I would really like to invest in one...if anyone else wants to use one and wants to share the cost that would be awesome! Hint hint**

Overall, we probably won't be going back to this particular clinic because it was too woo woo for my preferences.  I would say the day was beneficial because I loved the sauna and we certainly laughed a lot!

August 20, 2011

Battle Scars

Last week, I went to the hospital again to get my fifth picc line.  Yes, you read that correctly...5 stinkin' picc lines have been placed into my body since December '10 with no definite end in sight.  Hopefully this will be the last one until we stop my IV treatment, but who knows!  Usually people can keep them in for a while, infact, I even have a friend who had one for a year.  Unlike my dear friend, my body rejects picc lines which causes me a lot of pain and forces me to get it replaced.  Fortunately I have not had any infections yet.  The inside of my arms is covered in small circular scars which I consider battle scars from my Lyme fight!~


July 29, 2011

Here Goes Nothing - It's Procedure Day

Today, I am freaking out a bit.  I have a strange bump on my back that I am having removed today.  The reason I share this, is this "bump" is the epicenter to all my pain on my back.  All the pain radiates from this one spot.  About eight years ago, before my family understood my pain on my back, my mom was convinced it was a blackhead.  She pinned me on the ground and tried to squeeze it out.  I screamed bloody murder and cried for a long time.  That awful day is a lasting memory for us but it confirmed that my pain was not typical. Yesterday, my mom described what she saw on that day come out of the bump as a thick hair or a nerve.

Fast forward to this month when we saw my specialist...Dr. Harris took a look when he heard about the bump and said "let's cut it out!" He thinks it could be the tick head still in my skin! Ew!

So today, I am going to a dermatologist to have this potential tick head removed from my back.  I would probably be nervous if a dermatologist was removing something on another part of my body, but this is my back...at the most sensitive part of my back! :(

Some of my family members have a theory that once this tiny foreign object is removed that all the pain in my back will magically go away.  I disagree, but that would be pretty cool.

Prayers are welcome today. Thanks friends.



7:00pm So I had my procedure today and it went well. My dad took me to the doctor and helped keep me laughing up until the procedure so I couldn't stress too much.  The staff at Sierra Skin Institute was very kind and they took good care of me.  They numbed my skin and then punched out an 8mm cylinder (about the size of a new eraser on a pencil).  When the numbing stuff wore off it started to be very painful, but at least it's over. It took four stitches and I have 1-2 weeks until I know the results of my biopsy from the lab.  Thanks for the prayers.

July 27, 2011

Nausea

Nausea seems to be my biggest symptom lately and it is one of the hardest symptoms to manage.  The moments that I am not nauseous are few and far between.  Most of my medications cause nausea so I am on a lot of anti-nausea medication to try and control the horrible feeling.  In addition to the side effects of my pills, when the lyme die and the parasites die they produce a die off gas which makes me feel awful causing me to be nauseous.  Nausea is also caused by dehydration, which my body is prone to.  It is a vicious cycle to manage.  Bleh!

Sometimes the only way to get through it is to hook up to a hydration bag and take some medicine and go to sleep. Needless to say, I have been sleeping a lot    :(

Doctor's Order for Disneyland

I am a little behind on updating my blog...so here it goes.  

I saw my doctor in Redwood City and learned that my Lymphatic system was backed up.  Dr. Harris touched specific lymph nodes all over my body and it was very painful. I think the lymphatic system is responsible for removing old cells from the body and other waste.  The doctor also noted that my eyes were yellow as a side effect of one medicine.  He ordered that I work very hard on unblocking this channel in my body by putting myself with big vibrating motions like roller coasters and car rides on dirt roads. He also gave me some new medications to help.  

I left the appointment on a mission and decided to go to Disneyland to hit some roller coasters and take a break from my normal routine.  My husband and I have season passes so it was fairly inexpensive to travel down to L.A. and spend a few days in Disneyland trying to clear out my lymph system.  We just celebrated our third wedding anniversary within days of the appointment which was perfect timing for the doctor to order me to do roller coasters! 

The trip was not what I thought it would be.  My body was much sicker than I hoped during the trip.  I was able to spend about three hours in the park and then needed to go back to the hotel room to rest.  Then I could go back for a little while longer later in the day. I spent my time in the park in a wheelchair, but we made the most of it.  Justin knows Disneyland and California Adventure like the back of this hand so he took me to places with uneven ground so the wheelchair would vibrate to try and hopefully clear out my lymph nodes. I felt like a little kid searching out the bumpy sidewalk!  I battled horrible nausea the entire time so roller coasters were NOT what I wanted to do.  I ended up only being able to do one over the four days we were there. Instead of rides, Justin and I enjoyed the food, people watching and time together.

Overall, it was nice to get away, but the trip was very telling of how sick my body still is.  I have motivation to get better so I can enjoy Disneyland to the fullest next time.  My family is going over Christmas, so I have a goal to be much stronger by that trip :)


July 10, 2011

In Sickness and in Health

Yesterday, I had the pleasure of attending a life long friends wedding.  The ceremony was beautiful, the decorations were great, the speeches made me cry and everyone was joyously excited to celebrate Ashley and Steve.  I enjoyed myself as much as I could and then my nausea dominated and I had to leave early.  This wedding really got me thinking about my own anniversary (which is tomorrow) and how grateful I am to have married the man that I did three years ago.  When we, as humans, say our vows, I think there is a part of each of us who skim over the "in sickness" part...hoping it will never come true.

I am so extremely blessed to have a husband who honors that vow each and every day.  Already this morning he reminded me to take my medicine, brought me breakfast in bed, hooked me up to IV fluids, gently reminded me that I had my days mixed up and today was Sunday.  Now he is in the shower so he can run to the store and pick up more of my medicine.  He encourages me to do what I can and helps me for the things I am unable to do.

For those of my friends who are married, I hope you will take a moment and tell your spouse that you will love them exponentially if sickness enters your marriage...and for those of you who are not married I hope you seek out someone that you can love deeply when they are sick...In return, I pray they treat you the same way.  But above all, I pray that if any illness enters your marriage it will bring you closer together.

Happy anniversary, Justin. Thank you for honoring your vows and loving me through this time. I love you more than you know.

July 1, 2011

Torture Chamber

Last year a doctor recommended I start doing massages twice each month and because my doctor wrote an order for it, my massages were covered by insurance.  I know right now you are probably thinking "lucky!" but that is the last thing I think!  There is a reason I titled this blog "Torture Chamber".  Massages to me are a discipline because I have to let someone touch me in all my most sensitive areas, like my back. My first massage was quite an experience...I spent fifty minutes on the massage table flopping like a fish every time the therapist moved her hand.  Since then I have noticed improvements.  Massages are still painful, but the therapy is working in addition to my medications and the rest of my treatment.

I went to my massage place yesterday and had a new therapist do my massage. I have been bad at following the twice each month order, but yesterday I had interesting results.  The massage was fairly standard, the therapist was nice, my back twitched a few times and we talked about my disease.  After the massage I felt totally fine, but about four hours later I was hit with a ton of bricks.  I was all of a sudden freezing cold, emotionally and physically drained...my body needed sleep.  I slept for two hours and woke up soaking wet in sweat.  I was ready to go back to bed when I woke up but I was starving.  I knew my body was doing some awesome detoxing!  The rest of the night was more of the same.  

I am so happy to report that today the surface area of my back sensitivity has shrunk again! I have a long way to go to being pain free on my back BUT I know it is working.  I have never had such positive outcomes after "torture chamber"  ;)

June 17, 2011

Summary from the Last Month

I have been majorly slacking on my blogging. Sorry. So in the last month I have had multiple doctors appointments and each appointment I have left with encouraging news.  I am getting better, slowly but surely.  My blood work has been inconsistent and jumping around a bit, but overall nothing to worry about.    My life is like a roller coaster where I go from extreme good moments to extreme bad ones.  I have had a lot of nausea :( but I have medicine to help me cope.  I am trying to prevent the big swings by resting a lot before I have an event (like hanging out with a friend or going to a graduation party). I am getting better at anticipating what will be taxing on my body and how much I can handle. It was really encouraging to know that I am improving. I am trying to stay positive and know that there is life beyond Lyme disease.

Today, I would like to introduce you to my sidekick during my treatment: my diaper bag.


This bag holds EVERYTHING I need. I have all my medicine, syringes, alcohol wipes, hand sanitizer, drink holder, ice packs, infusion balls, and who knows what else!  I love this bag! Early on in my treatment I was laying in bed dreaming of a bag that would hold everything I needed, be water resistant if I spilled something, hold water bottles and my list went on and on. After a few hours thinking about it, it dawned on my that I was dreaming of a diaper bag!  That night I mustered up all my energy and headed to Target.  My perfect bag was sitting on the shelf waiting for me AND it is even lined in lime-green (the official color of Lyme disease)!

May 19, 2011

Getting the Word Out

May is Lyme Disease Awareness month and I wanted to do something small.  I am doing my Lyme Disease Awareness event on Saturday for a few hours and am hoping for good weather.  I also found a website where I could order rubber bracelets for all my supporters and friends with Lyme.  
Photo courtesy of upcycledbyash.blogspot.com.

The bracelets say "SOMEONE I LOVE HAS LYME DISEASE" and are lime-green.  They are very similar to the Livestrong bracelets.  I will be handing them out on Saturday so if any of you want one, let me know so I can try and get one to you.  I have 200 in total and will take a donation if anyone wants to help me pay for the bracelets, but no pressure at all.  

I am so excited to distribute my bracelets and have them be conversation starters!  

Have a great day everyone. 

May 18, 2011

My Trip to Boise

Go Brooke! Wish I felt better this day.
I left Reno on Thursday to spend the long weekend in Boise, Idaho celebrating Brooke's graduation from Boise State.  That's right, Brooke graduated!!!  I was anxious about flying with my infusion balls because they resemble bombs (see picture below).  I had twenty balls, saline syringes, heparin syringes, iv zofran among all my other medicine.

I researched and my dad called the airline to find out if we would have any problems getting through security.  All in all, TSA was wonderful.  They didn't believe me that my diaper bag needed to be hand inspected because I had ice-packs covering the suspicious "bombs".  I made it a goal to not use the word bomb, but really in my day to day life that's what we call them.

So security took a long time, about thirty minutes longer than the rest of my family because I had to be hand inspected and all my medicines had to be tested for vapors.  I remain patient and kind with the TSA workers and they were great.

I did learn that you can't bring an ice-pack through security that is partially defrosted.  They must be fully frozen when you go through security.  If it has gel they have to throw it away.

I thought it would be fun to go through security and bring twenty "bombs" of infusion, but it was much less eventful than I was expecting.  I did learn some things about the job of a TSA worker and how meticulous they have to be for everyone who comes through the airport.  I had an educational experience and was able to travel with my thousands and thousands of dollars of medication and made it to Boise.

The rest of the trip was hard on my body.  The full moon was coming, which always makes my body act up, but I think the travel also took a toll.  I wasn't able to watch Brooke walk at graduation, but I did get to go to her party.  I spent a lot of the trip in my hotel room sleeping and getting IV fluids.  It was sad for me, but I just had to realize I am doing the best I can.

I'm so proud of Brooke and loved meeting her and her friends.  I hope to go back there soon and visit her when I feel stronger on a more consistent basis.
This "bomb" is the size of an apple (merrem). I have another the size of a grapefruit(zithromax). I do multiple each day.

May 10, 2011

It's Been Six Months!

Yesterday marked my six month anniversary since my original diagnosis! I had an appointment today in California with my Lyme specialist.  I have to say, with all my anxiety I have about going to a doctor's appointment, today's was really good.  I have hit my first medication plateau with fighting Lyme so I get to graduate to my next IV medication!  The doctor was very proud to see my progress and that made me feel really good.

Fighting Lyme disease is like running a marathon.  Today, I learned that I am doing well, my shoes are holding up well, my water bottle needs to stay full, and I need to continue to pace myself.  I am running the race and doing really well.  I am grateful for my support team cheering me on and for my "trainer" who keeps checking in on me throughout the path.  I have a long way to go, but after running for six months I am doing incredible well and on track to finish the race.

Two-lumen picc line with extension set.
Speaking of my "running equipment", this (pictured) is one of the most crucial pieces. It is called a picc-line. The line is on the inside of my left arm and has 41cm running through my vein from my arm all the way to my heart.  I have had to get a few of these placed for different reasons, but this current one is working well and super important to my continued success in fighting Lyme disease.


May 5, 2011

My Body Must Be Working Hard

Earlier, I had a conversation with my husband about how awful fighting this disease would be without the ability to play games on my cellphone and watch movies. He started singing the silly song about loving technology featured at the end of Napoleon Dynamite.  I decided to share it with each of you.   :)


My conversation with Justin got me thinking...my body works really hard and I thought I could give you a play-by-play of what my day typically looks like. 


 7:00am  While I am sleeping, Justin hooks up my first infusion of the day.


9:00am   Time to wake up, unhook my infusion and eat something with a high fat content (my waistline hates this part), then take mepron (bright yellow and tastes like paint) and alinea (we had to fight and fight for the insurance to let me get this medicine) Both of these meds fight parasites and one of them is absorbed with fatty foods.


 9:30am Go back to sleep - my body is already exhausted


10:30am Move out of my bedroom into the living room to enjoy the daylight and have more channels to watch while I am resting. The rest of the morning/early afternoon is resting on and off. I am usually very groggy and hard to function in the morning.


1:00pm My dad comes home and joins me for lunch. I eat something small, but the most important thing is I force myself to eat no matter what. We chat about his day so far and he reminds me what is going on for the rest of the day/evening. After I eat, I take eleven different medicines in pill form.


2:00pm Hook up my second IV infusion (antibiotics) of the day then rest...my body is yet again exhausted from fighting the fight and letting all these different medications work. If I have energy, this is the time I get ready and hope I will have something to do.  My favorite is going to Starbucks with a friend/family or getting someone to drive me to a store and walking around.  This is also an excellent time to educate strangers about the weird thing coming out of my arm (my infusion) and my Lyme disease.


4:00pm Unhook my infusion. Start infusion #3 aka Big Momma.  The third infusion is huge compared to the others, but takes just as much time. I have a hard time fitting this one in a sweatshirt pocket so I usually try to be home by this time.  I will often rest during this infusion if I went on an outing.


6:30pm Eat dinner. Low carb, no sugars. My current Lyme diet is a lot of fish (gulp, I am trying to learn to like it). I choke down dinner and unhook infusion #3. I also take another ten or eleven pills with dinner. After dinner is my prime time. I almost always feel my best after dinner and during the last part of the day.


8:00pm Family bonding over TV.  Almost every night we sit in front of the TV as a family and laugh over Biggest Loser, Bachelor, Survivor, Grey's Anatomy or some other show de jour. This is a great time of joking around and being a family.


9:00pm Eat something fatty, but healthy, to take with my mepron and alinea.


10:00pm Start infusion #4.


10:15pm Castor oil pack on liver or wherever doctor is instructing me to do it.


11:15pm Coffee enema (I only do once each week. This can be done at any time but I usually do it really late). Sorry if this is TMI! I have many Lyme disease followers who are using my blog for guidance.


12:30am Shower and go to bed. Now I am REALLY exhausted. My body is in full detox and ready to sweat out during my sleep.  I try to keep sweating as much as possible to give all this crap in my body every opportunity to get out as possible!




During all of this resting, infusing, and waiting for my body to get rid of the disease I am so grateful for my iPhone, hulu.com, and netflix.  I am also grateful for my support team (Justin, Janice, Dad, Mom and Harmony) who keep me on schedule.  The hardest thing is staying on top of my timeline, because if one mess-up happens early in the day we are up literally all night catching up because each drug has time and diet restrictions.  I seriously am not equipped to follow it each day on my own. My body is fighting me to go to bed so no clever ending for you today.  All I have is...alright, I am exhausted just thinking about what I did today. I am going to bed.  <3 you all.

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.