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.