Thursday, January 12, 2012

Things I Miss

In being sick for such a long time there are some things I discovered. I miss things. Not physical things but life things. Here are the things I'm missing after 3 years of dealing with Lyme and co-infections.
  1. Making my own decisions. Oh sure I make hundreds of small decisions a day but in reality I've had much taken away. I had no choice but to give up my nursing career of almost 20 years. I miss the adrenaline rush and I miss helping people. Decisions should be mine.
  2. I've had no real choice in my treatment plan. Even now, my LLMD tells me what she thinks is best, I may get a choice on which path but reality is if I don't do this, this disease might kill me.
  3. What I feel I can and can't do on any given day. Somedays I feel well enough to venture to a store. Other days, putting on socks exhausts me. I don't get to decide that. My body does. I'm merely there to cooperate with it or suffer the consequences of poor self care.
  4. Keeping a facade. Lyme patients have to have a facade. In a sense it keeps me sane because for a few moments I get to be normal and like everyone else. People look at me and say, "You don't look sick." Sometimes I am grateful for that. If I sit and think about the magnitude of this disease and what it's done to my family, life and relationships I can get very depressed. But my kids and husband need me and if I spend every waking moment crying I'm not much use to them. They do see me cry and struggle and see me at my most raw moments. But there is still life to live. My facade is holding up just fine thank you.
  5. I miss thinking. Lyme fog is awful. Cognition is non existent at times. I live my life by sticky notes and wonder some days if my thoughts will make it from my brain, down my arms and onto the keyboard or paper. If it does-will it make sense? What did I forget today? I'm still volunteering at church and in the homeschool community (by computer mostly) because it keeps my brain active and people still value my opinions (I hope). It makes me feel like I'm still contributing in some way and that my brain still has a few active cells left.
  6. Playing. I miss playing ball and running (any physical activity really) with my kids and being able to go see their activities.
  7. Traveling. Anywhere.
  8. Being spontaneous. Not that I was every really spontaneous. Those that know me know I am the well planned out girl. But sometimes it would be nice to just get in the car and go without having to worry about when the next dose of medication is due or to take the kids out for icecream instead of knowing that the trip will be too much for me. With being spontaneous comes planning ahead. I can't do that either because I never know how I will feel.
  9. I miss my hobbies. Gardening especially. Digging in the dirt is very cathartic and meditative for me. Growing the food is providing something for my family.
  10. I miss being trusted. Trusted to know that I was/am ill, trusted by my doctors, trusted by family and friends to know that I am making the right decisions for me at this very moment.
At this moment, it's all I can do.

Sunday, January 1, 2012

Lyme Update

I thought I would post this photo of my what my Friday morning routine looks like when the IV nurse comes to draw blood and change my PICC line dressing.

I'm holding my own for now. I saw the Lyme specialist on Friday. We (she) is doubling my dose of IV Doxycycline and adding in 2 more oral antibiotics. Since I had such a bad Herx reaction a year ago on IV Rocephin she is taking it slow. We did a few months of oral antibiotics, eased into the IV and now we pull out the big guns. I learned my brain lesions were in my frontal lobe. Well that explains a lot. She told me to prepare for some days of suckiness.

A few things have improved. My pain level is a bit better, I'm walking a bit better and I don't get chest pain and palpitations 24 hours a day now. I haven't had a Bartonella/Lyme rash in over 2 weeks. Small blessings but at least I know the meds are starting to work. And my kidneys and liver are so far holding their own and not protesting too much from all the meds so I guess that's good too. How frustrating though that it's been 5 months of various treatments and the meds are JUST starting to work.

Things that have worsened are my headaches and I'm having tremendous difficulty with processing, word finding difficulty and following conversation. I forget words and transpose letters in typing. Yesterday I could not make a coherent sentence. It was kind of frightening in a "I'm having a stroke" sort of way.  My typing skills have also deteriorated. Blog posting is painful and tiring. My vision has also significantly worsened, much worse after my IV dosing. My brain feels swollen.

 It perhaps is.

I'm tired.

 It's a tired I can't explain to people other than to say, "Run a marathon...then do it again as soon as you finish."

My family is feeling the stress of doing what I cannot. Laundry, chores, running errands, my crankiness and mood swings. It's a life change for all of us. I'm grateful for them.

2012 has arrived. I am fighting this. I have to. It's taken up too much of my time and my life. I will endure what ever suckiness it feeds to me. I am stronger than this. I will be stronger than this.


Brussels Sprouts delux

This is my favorite recipe for Brussels Sprouts. Even if you hate sprouts you will love this recipe.
  • 1 large stalk of Brussels Sprouts or a frozen bag will do.
  • 1/2 pound of bacon
  • Salt and pepper
  • Chopped garlic
  • 1/4 head of shredded red cabbage
  • 2 lemons

 This Christmas I found these great Brussels still on the stalk.

 To prepare the Sprouts, snap off each head and place in a bowl. Give the rest of the leaves and stalks to the chickens. They need a Christmas treat too.

 Give them a good wash and peel off the outside waxy and damaged leaves.

 Shred the cabbage and cook it with the bacon in a cast iron pan. Seriously, invest in a good cast iron pan because it makes all the difference in the world.

 Cut off the end core of the Sprouts and discard.

 Add the garlic to the pan and continue to cook until the bacon is crispy.

 Really crispy.
I mean I guess if you were vegetarian you could omit the nevermind.
 Don't make this if you are vegetarian.

 Score a cross hatch in the core end of the sprouts. Don't cut all the way through or you sprouts will fall apart. The scoring helps them cook through.

 Add the sprouts to the bacon, cabbage, garlic mixture in the cast iron pan.
Cook until bright green.
Sidenote: if your mother used to cook sprouts, broccoli and cabbage until it was gray in color and mushy please note that this is gross and not the correct color.
 Green vegetables should still be bright green after cooking. You will need to cook the sprouts for about 10 minutes on the stove top.

 Add 1/4 cup of water and a lid. This will help steam the sprouts a bit.

 Place the whole pan of sprouts in the oven at 350 degrees for 10 minutes.
Pull them out and they are all toasty roasty good.
I could have let mine roast a bit more but I actually like them a bit harder and greener.

When you take them out of the oven-give them a squirt of the juice of one whole lemon. They need the lemon to help with a the bit of bitterness in the sprouts.
Give each person a small wedge of lemon to put on their sprouts as well. Hot sprouts absorb the lemon juice that you added and they will need a bit more.

My kids devoured these.
You will too!