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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.