Thursday, December 29, 2011

thoughtful

This holiday season has gone a lot better than last year's (seizures and basically incapacitated the whole holiday vacation).  I've been on treatment these two holiday weeks, but we've been visiting family so it sort of sticks it to me even more the stuff I'm not ABLE to do while fighting this disease.  We are so thankful for the improvements we've seen over the years but I've found myself getting discouraged only to remind myself "Someday, you'll be able to......"

So here are my "somedays":

Someday, I will be able to,

-sit IN the room where the whole extended family is as they laugh and cajole instead of sit in the room nearby because all the "noise" is making me feel yucky.

-sit at the dinner table with the whole extended family instead of in my room as we all eat dinner because the noise of all the kids is making me feel overwhelmed.

-get through the fun that is Christmas morning without getting overwhelmed by the sound, movement, and squeals of delight.

-go to the museum with nieces and my own children instead of canceling because that outing would take away too many "spoons".

-not take time out of precious extended family time to go get a lymphatic massage to help my body be able to withstand and detoxify from little Lyme "bugs".

-eat all the holiday sugary treats without feeling awful (lethargic and joint pain) the next day.

-do my routine for the annual "Talent Show" without having to spend the entire next day locked away in a quiet bedroom unable to move much.

-not be phased by clutter (this seemed to only come on since I've been diagnosed with Lyme; heavens knows I didn't care about clutter before!).

-not limit my time with my visit to my hometown to JUST family because I can anticipate how my body will react if I start doing a bunch of outings with friends.

-sleep in a guest bed without all the pillows and padding around my body.


There are more....

oh-so-close to the Pacific ocean!
But like I said, I've seen so much improvement since last year.  And we do truly feel that traveling has sort of taxed my body more than just doing these types of things at home would have.  We still have real "plans" for next year and THAT is something we have not been able to really say we have since my sickness began.

So conversely, here were the things I was able to do:

-go get a gluten free cupcake at Sprinkles Beverly Hills :)

-go to Malibu and sit with my husband across from the ocean while he ate a special seafood lunch.

-go out on a few much needed dates with my husband while grandparents watched the littles.

-ENJOY time with extended family

-enjoy watching my girls enjoy their relatives.

-spend relaxing nights watching movies with the family.

And more :)

I hope you've all had a wonderful holiday season so far!  Happy New Year!!!

Wednesday, December 21, 2011

BAM!!!

V E R T I G O

...again.  I think it's a herx.  Because last time it happened I was on this same week of meds.

Ughitty-ugh.

Saturday, December 17, 2011

not labeled

Lyme Disease does not define me.

This is a post I've been trying to put together for a long time; a post I've been trying to "work out" in my own life for at least a year.

It's hard to not feel defined when such an all-consuming disease like this one doesn't leave any facet of your life untouched.  But just because it consumes just about everything in your life, doesn't mean it sucks all the other things that defined you away.  I like to think of them as on hold.

The things that are on hold for me, that used to be a part of me when people would ask, "So, Heather, what do you like to do?" are:

-hiking
-getting my Masters degree

I thought the list would be longer honestly.  I would sort of have pity-parties every once in a while, lamenting what Lyme has taken away from me.  Sure, it's taken some of the joy, energy, and "zip" from my physical life, but here are the things I still get to do that were part of who I was before Lyme took over (albeit differently than I did them before):

-Pursue godliness
-Photography
-Cultivate friendships
-Play with and nurture my children
-Spend time and go on dates with my husband (and best friend) *wink*
-Enjoy good movies
-Love animals (zoo, wildlife, wish for a dog, and love and make fun of our own cat)
-Encourage others

I'm sure there's more.  These things are done differently now because of my energy reserves, but I am still able to do them.  I think I used to lament how much Lyme had devastated my "plans".  But really, they weren't my plans to begin with - GOD had planned it long before I could have seen what was coming.  And so why fight it and feel sorry for myself when this is what God placed in my life for NOW.  He wants me to be cheerful and learn patience, and when I stop crying over what I've think I've lost, I see clearly that I'm still able to do so much of what I used to....just a little differently than I used to.

I often would lead a conversation with a new person with, "I have Lyme disease, so I really can't do much other than lay around."  But that was a lie because if I had thought about it, I could have told those new acquaintances that not all my days were filled with JUST laying.

And who I was before Lyme is still who I am with Lyme, although I'd say I'm a little more worn, wiser, and stronger for it.  I'll tell you what, once you start looking past your life being defined by your disease, a whole other world opens up for you.  There are so many opportunities you can sieze even if you are on the couch; so many other lives you can touch and encourage, friends you can hang out with without bemoaning your existence trapped in your house and a body that doesn't always cooperate.

It's hard at first but when you decide that you don't want people to think of you as "that girl who always talks about how hard her Lyme disease is", you'll find that you can make friendships stronger and richer and in my experience, they still know you have Lyme and they respect you more for it.  It's a very mysterious disease; all of my friends know how debilitating it can be at times.  So I usually get the genuine, "How are you doing TODAY."  And instead of going off on how my wrists hurt so much last night I couldn't sleep, and my energy was spent taking a shower this morning, I usually say, "I've had better days but at least it isn' as bad as my worst days!"  And then I turn the conversation on them and we start having non-disease discussion.

Non-Lyme conversation is SO nice.  Now it doesn't mean I don't "Lyme-it-up" with my Lyme friends.  Sometimes you do need to vent and it helps to see how others are dealing with their disease and even encouraging to find out your very VERY weird new symptom is pretty common with other Lyme patients :)

So I guess all I'm trying to say is that I am more than my disease.  I'm a child of God, a wife, a mother, and a woman who has many passions and hobbies (that for a time might be altered to fit my lifestyle now).  I'd rather be known (outside this blog) as those things than, "that girl with Lyme disease."


P.S - safely made the travel across the country and my body is doing so much better than it did last year. We are so encouraged at the progress I've made.  Onward and upward with treatment!

Monday, December 12, 2011

fantastic!

I am on my second "off week", but I have been feeling fantastic!  Energy levels through the roof and a very joyful heart.  I've been enjoying it so much as we near my next two treatment weeks (which just so happen to be the week of Christmas and New Year's) and I hope I can be just as grateful if I feel terrible during the holidays.

We are so encouraged as I have been dealing with my "bad" days a lot better than I had been.  I generally have about one or two days on a "bad week" where at some point in the day I feel like I need help.  But I haven't had any and I've made it through at no more harm to my body than if I had had help!  We are so thankful that this treatment plan is working to clear my body of Lyme&Friends.

It makes us feel more like we can start thinking about future plans.  We have some travel time in the beginning of the year and while they are on "off" weeks, we do feel like it most likely won't stress my body out as it has in the past.

In a word, we are HOPEFUL.  We know the disease can be so up and down so we haven't really let out a sigh of relief yet, but we are so encouraged at what we're seeing.

I'm taking advantage of all this feeling good to love on my husband more and love on my children more. And seeing as we're nearing the holidays where things tend to stress us Lymies out, I'm just hoping I can take it easy and make sure to listen to my body so I don't overdo it.  Seeing family always tempts me to do more than I should.

Praying for all you other Lymies as we get closer to the holidays!!

Monday, December 5, 2011

not worried

I realized I've come to a point in my sickness (and in life) where I now try not to worry about how my house looks when friends come over for a casual hang out.  And I don't worry as much about how I look.

When you don't have the energy, what can you really do, except stay holed up in the house, not leaving any room for friends who would LOVE to come visit.  My husband usually takes care of food and such so that I can rest.  But what was happening before was that I was not having people over because I didn't have time to pick up the house.  Or I didn't have the energy to put on makeup and what not.

Since moving to our new place (been here a year), we've realized just how important getting together with our friends is to my health and to my husband's sanity.  On my worst worst days, I obviously can't entertain or keep up conversations so we do say no at those times.  But when it's just a matter of not having energy to clean or to put on makeup, we try to say yes.  Our friends make us laugh; our friends encourage us; our friends understand.  We always come away from time spent with friends feeling refreshed, even if it doesn't physically "heal" me.

We also started using our "good" dinnerware every day.  Someone once said (and I don't remember who) that you should use your good dinnerware with your own family and friends instead of saving it for a special occasion.  Now, we don't own fancy fancy china, but we do have two sets of dinnerware.  One I use during the day with the kids and for myself, and the other I used to just keep away until guests would come.  But then we decided to just use it because it is cheerier and by golly, it's OUR dinnerware.  We also started eating at the table each night.  On very bad days, I eat on the couch still, but I love that my husband still eats at the table with the girls.

Now, back to makeup.  I used to wear makeup and do my hair every day.  Not overly dramatic or anything, but every day I put on makeup.  When I got sick, that went out the window.  I mean, who has energy for makeup and hair when you can barely take a shower without having to sit out the whole day.  I would say that now, 80% of the time, I do not wear any makeup.

I'm one of those people who goes out without makeup and strangers ask, "Are you sick?"  And that was BEFORE I was sick too!  I guess I don't have a good complexion and my eyes need a bit of help to pop instead of looking sickly.

These days I save makeup for when I'm going out with my husband.  That means church, dates, and shopping with him.  And I put the extra touch on when it's a date.  We had the privilege to go on a date recently and as I was getting ready, looking a little "fancier" than I usually do, I realized that most of the pictures of me are "sick on the couch".  I decided from now on, when I wear makeup and dress in anything other than sweats, I'm going to take more pictures of myself.   I want my girls to be able to see pictures of their mom NOT looking like a frump all the time.

My oldest daughter LOVES when I put on makeup and dress up.  She sits in the bathroom just watching and asking questions about the various things I'm doing to my face and ooohing- and-ahhhing about how "pretty" my lipstick is or how "lovely" my shirt is.  I love it.  I also want to teach her to look nice....especially for her husband.  Whenever she says, "You look so pretty today!" I say, "I'm being pretty for Daddy!"

5 years ago
I was lamenting to my sweet husband about how I saw pictures from 5 years ago right before I got really ill and how just a bit more facial "fat" made me look so much more healthy and now I'm just "gaunt".  But he assured me that he thinks I look just fine now and that some day I'll gain some healthy fat again.  I know my husband loves me and still calls me beautiful even with my chicken legs and sallow face -- even without makeup or dressed up clothes, but I still hope for the day when I'm well and can spend some energy to wear some makeup and wear something other than sweats for him and my family EVERY day :)

This is your Mama, girls.  When she makes an EFFORT to look nice :)