To Live More Fully

As I am healing, and not feeling so sick constantly, I am able to have more choices.  For years, my "free time" was basically non-exsistant.  If I did do something fun for a bit I was in recovery, on bed rest, for days.  In this last year that has slowly been changing.  I am becoming more normal.

I feel like others, "normal", in that when I get a few minutes, what do I do with it?  Do I stay in touch with an old friend?  Or a new one?  Play games on the computer?  Organize paperwork?  Draw or be creative?  Watch TV?  Play with my kids (what they want to play)?  Meal plan?  Detox bath?  Ect....?....?....?   My mind gets cluttered with these choices, and I end up choosing the laziest.  I don't want to waste time, I want to treat myself as more important than that.

I was talking with a friend the other day who was sharing about the struggles of being a mom and keeping balance within herself, the kids and her home.  But before long, she stopped sharing because she said she felt like it was whining compared to me dealing with my health problems.  In no way did I feel like her struggles were whines.

The thing I realize is struggle is always there for each person.  We each have our own Sh#t to deal with and in that struggle we can all relate.   When we take a look at our day to day life, we all share a desire to be more than we are currently being.  We see where we are damaged.  At times it can weigh us down.  We feel isolated because it is OUR issue(s) that we have to figure out how to muster up the strength to respond to.  We realize life is valuable and we have to be sure we are making the most of it.  Everyone has a story, a story of how they are trying to make the most of this life, and a story of why they try hard or try just a little at living.  Your story is as important as mine.  I tell my story to live more fully.  Please tell me yours so I can live more fully.    

Turning Up the Heat

    I really enjoyed the snow during the winter and now that it is spring I am loving the sun and heat!    With the season change also comes changes in my treatment.  The spirochetes continue to look for weakness in my body and want to take over as much as they can.  The spirochetes are also tricky lil buggers, so we've got to outwit them.  I had another doctor appointment last week and after a hour of questions and tests, it was decided to turn up the heat.  I was told it HAS to get worse before it gets better so these next 2 months will be rougher than the last 2.  At least I get to have my treatments at home!  

     I am staying on the same 2 prescription antibiotics (just doubling the dose of one) and 5 herbal antibiotics.  Then I am beginning another prescription and 2 more herbal antibiotics. 

     It hurts to kill off the Lyme & co-infections.  All kinds of strange, annoying, and painful symptoms come up.  My mouth has tasted like metal for a week, my sleep has much disturbance the , off and on sore throat and swollen glands and for a whole week for the last few months I will feel as though I just got whiplash.  I also have overall weakness.  I just went out in the beautiful sunshine with my dog for a walk and had to turn back after 5 minutes.  Those were some calm, painful, enjoyable minutes. 

      The way I look at it is this is the part of my life that is my struggle, everyone has something.  I am where I am supposed to be...healing.  Reaching goals is not easy, it is work.  My goal is 3 years to heal (doctor said 3-5 years) so I have another 1 1/2 to go.  

     I feel incredibly lucky and grateful to have a great support system (My doctor, Heather-My doctor visit driver, note taker & support, Tim-my husband who has set up the house for me to be able to heal, my kids-who are encouraging and helpful to help me stick to my goal, my mom-listens, organizes my medications, finacial, JP-my couch buddy so I am not so lonely being homebound).  Also for Angel Flight who flies me to & from Seattle every 2 months, helping the trip be a little less exhausting!  

Burdens & Blessings Today & Each Day

Being sick can be just downright icky!!  There are moments, or longer, when I forget how sick I am.  The reminder comes like a punch in the stomach. Oooofta!  Wait!  What?!  Oh yeah, I am sick.  Really sick.  It is like having the flu all the time.  You just want to get better.

In my last post I shared about my treatment changes and how it was expected for me to herx.  Yes.  The herx has come.  It took a hold of me terribly for over a week and had me on bed rest (or bed pain).  Then let up but has left me with muscle cramps, stomach upset, occasional nausea, fatigue, insomnia (lying in bed for hours feeling like I am only a second away from sleep.  It is quite a not very funny joke that is being played on me!), headaches, migraines, joint pain and others I can't think of at the moment.

It is frustrating to have so much pain with any movement.  It hurts in each part of my body within the muscles and joints.  My mind wants to do so much from chores to hanging out with friends and family to reaching bigger goals.  I get energized/excited to be with people then feel something like the flu, slam into my body, screaming "GO LAY DOWN NOW!".   I grudgingly say, "geez okay, okay.  You didn't have to throw such a fuss!".  In return I hear, "That is the only way you will listen!".

I succumb, to this point in life where I find myself, experiencing peace and joy in the midst.  Each person has their own burdens and blessings.  Above are some of the burdens, below are some blessings:

-long weekend visits from both Keri and Heather
-getting lots of time to sit and talk with my kids
-our house with big windows & being next to a field, park and my kids schools
-going for walks with my dog (even if they are only 5 minutes)
-getting to live where it snows
-getting to live where there is sunshine
-getting warm summers
-I get to have lots and lots of Sea Salt
-I can have fruit
-understanding, helpful husband and kids
-having so many similar interests as my kids and hubby
-for a loving family
-for help to pay for my treatments so one day I will be well
-for the hope for a NEW & IMPROVED me!
With this joy and hope I am motivated to continue on with my busy day of treatments, today and each day.   

Doctor Appointment Yields Hope

My doctor apt went well.  I am in a very hopeful place in my healing journey.  My health has been a downward spiral for so long that it is so comforting to know what   is wrong and what to do to get better.

My doctor asks many, many questions at my appointments during our hour together.  This time I was able to tell her about a couple break throughs.  #1 My family went on a weekend vacation together.  #2 We have had a couple people over for potluck dinners.  Although I was still in pain, and experienced so many symptoms from my Lyme, my body allowed me to be part of these things.  A year ago there was no way!  

These were great clues to show us I am refreshed enough to go into the next steps of my treatment.  My doctor is changing up my antibiotics to target different areas of my body.  I am stopping all current antibiotics and starting 2 new prescription, and 5 new herbal antibiotics.  As these get a hold of the varies Lyme within my body and kill them off there will be a worsening of symptoms for a period of time.  A few of them are Headaches, night sweats, shortness of breath and chest pain.  This is another reason why detoxing is very important.

My pill schedule continues to be (I can't think of the word...) frequent & alot of pills.  8 times a day taking nearly 100 pills.  This is nearly overwhelming but it is part of my treatment and the more I look into what each does the more grateful I feel to have a doctor who is wise enough to treat all the different problems throughout my body.  I am also so grateful for the help from my mom to pay for these!

Another reason I am ok with taking all I do is because it is giving my organs support while being on so much antibiotics.   Each visit, I learn that my blood work is coming back saying that my kidneys & liver function is great.  That is wonderful because it is another indication we can keep going full force killing off those little mutha ruckers!          

Lastly, I also am gaining a bit of weight back!!!  I have gained 5 #s in the last 2 months.   I am proud to say I now weigh 100#s!  My goal is at least 5 more by my next doctor appointment (2 months).

I am revitalized and focused on doing my weekly schedule of pills, healthy foods, juicing, infrared sauna, baking soda baths, coffee enema, dry brushing, walking (with my dog), nap and more water than I think my body can handle.  I am also wanting to do more meditation & art and focus on learning more about the co-infections I have Babesia & Bartonella.  And hopefully in the midst of this I will be able to make connections with friends through lazy visits and in person and on the phone!

Rolling Lyme Derby

I am a person who gets energy from being with others.  I love to engage those I am around.  I love to connect with them.  I become relaxed and happy interacting.  But when it comes time to go home, I usually realize I used a bit too much energy for this fun.   How do I, a people person, be with people and not become drained?  How do I, a woman still very sick, be part of a community?

Last night I helped run the NSO's at our monthly bout.  If you don't know those terms you haven't yet been introduced to the amazing world of Roller Derby.  The first Roller Derby bout I ever went to was in LA at the Doll House watching the LA Derby Dolls.  They own/rent a huge warehouse.  As you walk in, you can instantly tell these women are some organized, creative, strong lady's!  The place is packed with confident volunteers telling the long line of spec taters where to get their tickets, and what to do next.  The walls have DIY paint & posters.  To the right through the bleachers, I could see glimpses of the black and hot pink banked track.  To the left I see another huge room with vendors and a small stage in the very back for the band at their half time show.  I loved the energy within the room and as the bout began I fell in love with this sport.  However, I am not one to be able to process details quickly so I really didn't know what the girls were doing on the track but I love their outfits, their clever edgy names, and seeing them be feisty knockin each other down.  Periodically, the screens would show a lil diagram explaining the game and the comedian announcers made it fun to learn about the rules.  I was hooked.  It is for sure a great night out.

When we moved out of state we looked into a local team and found a brand spankin new flat track roller derby team right here in our home town. It didn't have that same production value as the Doll House, but how exciting to help be part of something from the near start and help them grow.  Right away my husband began to skate with them as a referee and I became a NSO (non skating official) at their once a month bouts.

Last night there was a bout where I was Head NSO.  I love it.  That same energy I felt at the Doll House was in the air.  I love getting there early when the place looks like a regular skating rink and getting to see volunteers doing all the tasks it takes to transform it into a bout.  I love seeing different girls from my team and giving em a nice cupping slap on the hinney and exchanging silly words.  I love setting up the NSO's in the their job for the night and making sure they understand the details of their job, I love learning more about each of the NSO positions, I love stopping and meeting a spectator, finding out who they came to support or how they found out about us and telling them Thank you so much for being here.  I love seeing big floppy falls on the track.  I love seeing the jammer break through the wall.   I love checking on all the NSO's throughout the game and helping fix any glitches.  I love making sure all the NSO's get a "Thank you gift" out of the basket and watching what they pick! I love any chit chat that happens through out the night.  I do not love the feeling when I get home when The Sick hits me again.

You know when you are not sure if you are getting a cold/flu and then all of a sudden it hits you?  It's like that.      Oh yeah, sh#*, I am sick.  The really sick, long term sick.Sick. Oh what a nuisance.  No annoying.  No infuriating.  No, it is confusing and frustrating.  As I realize I have done way too much physically for what I should be doing, I wonder how to be me while dealing with this 3-5 years of healing.  I am beyond grateful for the prognosis of health in as little as 5 years but on the flip side I don't know if I can stand waiting that long.  How do I be me in the mean time?  I love chocolate chip cookies, pizza, volunteering, making art/crafts, being impulsive, hiking, jogging, skiing, skating, staying up late, dancing, going out with my hubby and friends, hosting friends for dinner and games.

How do I be part of a community in a sedated way?  Do I ask for friends to sign up to be put on a list for me to call last minute for movie watching at my house?.  (Since some days I might end up needing to go back to bed depending how my sleep went the night before).  Do I invite friends over to bring dinner and hang out?  Do I ask friends to invite me over to their house to make a no sugar, no carbs organic meat or beans + veggie dish?   Do I ask friends to get together and get the materials for us to do art/craft and they clean up?  Do I ask friends to call me on the phone to chat?........"Hi friend!  Can you be a sedated friend for me?"

It is definitely not my first choice.  But it is a choice for community and friends.  

Between Sleep and Awake

I go back and forth between being so ecstatic that I am actually starting to see improvement to being shocked at how much damage there is in my body.   I spend an evening out and that night or the next day am reminded about how fragile my body still is.  Normal things are hard on my body.  All of the functions do not work properly yet.  It is incredible how damaging Chronic Lyme Disease is.
      I had spent the last 10 years becoming sicker every year.  Now I can look back to a year ago and see improvements.  It is so hopeful.  It helps me to dream for my future.  It helps me relax about today.  It also makes me slack.  I have been eating things that make my body swell and have had a pregnant looking belly for the last month.  I know I should tighten up my diet but don't feel like putting in the extra work.  I am tired of it.  Lazy about it.  Unmotivated.  Then there will be days in a row I am so disciplined.  Part of the problem is I am also trying to eat eat eat to try to break the 100# mark.  I have been 95 pounds since at least last summer.    It makes it very hard to only eat veggies and meat (avoiding red meat except 2 times a week) and gain weight.
      In Peter Pan he says "You know that place between sleep and awake, the place where you can still remember dreaming?".   That is how I feel, stuck between 2 places, a bit disorientated, but excited.
I love being with friends and become energized.  Recently I have been well enough to spend time out with friends/family.  New Years eve playing games with friends, a birthday party watching friends play a dance game, indoor waterpark with my kids, end of the year celebration with our team with dinner and dancing.  All of these have in common: foods that don't quite match my diet, me standing and turning my neck frequently.  It is amazing how those little things can take so much out of me and leave me in a recovery mode for days after.
       Balance in life is what everyone toils with.  I am thrilled that I can get to make choices and dream of making even more choices in my future!   

Reality Check

My doctor appointment is in 2 days.  I leave tomorrow.  I am fortunate to be getting a quick ride on a lil airplane thanks to Angel Flight.  My trip home isn't scheduled yet so hopefully I am not stuck in Seattle.  Beautiful city, many friends but it wouldn't be a vacation (when they are all working) and I wouldn't have my meds.  Plus, I have a  friends Bday party Friday night that I gotta get back to!  Even if I am just sittin and hanging for a bit, I AM going!
 
Anxiety always fills me before my doctor appointments.  It is a reality check.  I can float along and for moments here and there try to forget how sick I am.  But it is like I am on salary for a demanding boss, I really can't ever forget my work.  I know I should have been making some different choices since my last doctor appointment.  That is how I measure things, every 2 months.  But I have been distracted, weak, unfocused, fighting with the reality of my days.

 I am still on the band wagon but have sure tried to hop off a few times.  I have been cheating and eating sugar in the form of my addictive enemy: The cookie.  I have not been going for my small walks unless I feel up to a longer walk.   I have been having daily conversations/arguments with my meds 5 times a day.    

New year brings new chances.  In the small, daily moments, I want to be more at peace with living with Chronic Lyme Disease.  I need to go back to cooking healthy huge batches of soups and freezing them.  I need to use some type of simple schedule to remind me all the different health/detox things I need to get in throughout my week.  I need to remember to nap in the afternoon and not push through to try to DO something around the house.  I want to meditate in the mornings and calm and focus my body and mind.  I want to stand up to that conniving lil bastard, sugar, and say NO WAY, I don't need you and you have no power over me, and be able to walk away.  

The good thing about seeing my doctor every 2 months is I re-evaluate my health and refine what "I" can do to help myself heal.  The bad thing is I am reminded I am sicker than the way I want to live.  My mind and body are filled with desires of things to experience and do but the reality is, I am too sick.  One of the my favorite things in the whole world is skiing.  I haven't been able to go for 12 years.  My kids are now learning to snowboard and I can't be up on the mountain with them.  It is a loss I have to mourn.  It is a hope I have for the future, to go down the hill someday with them.

The wonderful thing about having this particular disease is that I CAN heal.  It is slow, and a hard trek, but it WILL happen if I keep on keepin on!  And of course continue to get the incredible wisdom of my doctor!