Monday, October 31, 2011

not dizzy anymore

(click on pic to view source)
Have you ever had vertigo?  After a rough week last week on meds, I spent Saturday unable to stand up because of so much dizziness.  By the end of the day I was violently throwing up that we cancelled our plans to go to a costume party.  I was sad but it definitely was MY call because I knew I couldn't even lift my head without feeling like I was going to pass out.

This is my first taste of vertigo and I wonder if it is a common Lyme thing?  I'm just thankful it doesn't happen all the time!

Now I'm starting my second week of meds which involve two completely new ones that I've never had.  I wonder what my body will do.  Sunday I was feeling better after the vertigo on Saturday and this morning I woke up feeling a LOT better.  Just in time to pop some more pills.  Oh dear.  My mom is in town and she's been caring for my girls and the house so I really can just rest and let my body do it's thing to kill these "bad guys".

What do YOU do when you have a whole day of dizziness?

Wednesday, October 26, 2011

grouchy

OH my.  When I start feeling really ill I get grouchy.  And this week I am GROUCHY.  I feel bad for the family.  But they can tell with my snippy reactions.


So let's not talk about that :)


So the last two weeks that I was off of meds, I felt a lot of my creativity come back.  I've been browsing Pinterest and have gotten some inspiration there.  Here's what I've gotten done over the last two weeks!
I furiously set about to paint my daughter's crib the NIGHT BEFORE I started this week's meds.  My husband came in to help me for a bit and was asking me about my sudden surge of "projects".  I told him that since I feel better on "off" weeks, I get more creative and as the two weeks come to an end I feel like I have all these things to try and to finish before the dreaded day that the meds/bugs dying start slowing me down to where I'm trudging through sludge.  I told him I feel pretty useless those two weeks so I feel like I have to put all I have into these things I try to get done before my "on weeks" start.  He seemed to understand and stayed a few extra minutes to help me get the first coat of paint on the whole crib so that I could finish it up the next day.

Before:

After:

I also set about to decorate the house for fall.  I made a front door wreath:

A "thankful board":


My daughter's first grateful leaf: "God loving us" :)


Pumpkins :)



I decoupaged this foam pumpkin:

I took a cute mirror and turned it into a chalk board:


Anyway, I will now resume my place resting and feeling grouchy.


Monday, October 24, 2011

pleased

 Last week I managed to have enough energy to interact with my children more, parent them the way I always wish I had the energy for, and went on a walk with the kiddos.  It wasn't very far -- I'd say half a mile at most.  But I was pushing BOTH kids in the double stroller.  We walked to a nearby grassy area.  The kids LOVED getting outside since we've been cooped up too long.  They ran and ran like children should.

But I soon realized that pushing a 32 lbs and a 22 lbs girl in an already heavy double stroller was not a smart idea.  I may have overdone it that day.  I spent the rest of the day just waiting on the edge of my seat expecting a huge "fall".  Thankfully there wasn't anything major, but I did end up being quite a bit off my feet for the rest of the day.

Well, it was just so unfortunate that walks weren't going to work because we happened to get a snap of cooler weather, making being outside so much more bearable.

So I made a sweep of the backyard to make sure we didn't have any unscrupulous bugs that might hurt the kids (no we don't have ticks in the backyard, thankfully!) and then asked them if they wanted to play out there.  Sadly, I can't just send them out there alone.  My youngest would most likely get into too much trouble.  She needs supervision.  So I grabbed one of our reclining beach chairs and set it out there, resting the whole time, watching my kids play.  It was such a joy!

Sometimes I find that when I'm cooped up on the couch feeling awful, all I see are my children disobeying, being naughty, being unkind to each other, and not speaking to their mother as they should.  I can tend to focus on the bad they are doing instead of seeing their creativity and kid-life and the times they DO obey, treat each other sweetly, and speak nicely to me.

It was nice to remove myself from the couch (even if I did recline outside!) and get the reminder to really watch my children inside the house and out :)

*disclaimer* - just because I felt the need to rest this week, doesn't mean I was having a bad week; on the contrary, I was doing really well and doing extra stuff, and therefore needed to rest more :)

Wednesday, October 19, 2011

surprised

First off, I need to say that the previous post was not fair of me to post in the brief way to wrote it.  I didn't have energy to explain things properly and it could definitely look like I was a huge "conspiracy-theory" type person.  I'm not that person.  And I was trusting that most who read it understood the controversy that goes on between LLMD's and researchers and the CDC.  But those who don't know would probably just write-off what I wrote.

Also, the maps I used were probably not the best ones because the Vet's map included a few ticks that we don't know transmit Lyme to humans.  MOST of those ticks do and if you even just looked at the "Deer Tick" areas you'd see how different it is from the CDC's map.  Also, there's a better map here of what the CDC thinks about Lyme exposure.  STILL, very under-reported and not accurate.  The CDC says that Lyme may be underreported by about 6-12 times what is reported each year!

ANYWAY -- more importantly for me to clear up, it was brought to my attention that the CDC does finally say that you can contract Lyme disease in NORTHERN CALIFORNIA!  yay.  But it's hard to be excited for too long when you see that they don't believe it can be contracted in so many other places and not in as great a quantity as those inflicted with Lyme are proving!

I just wanted to be fair.  I don't want to alienate people from the reality of the disease just because I wrote something without explaining it when most people who don't know much about Lyme would probably  trust the CDC in most cases.

Like I wrote to someone recently -- I don't believe the CDC as a whole or even the majority of doctors are a part of some "conspiracy".  I just believe they are misinformed.

I believe the high up docs who set the guidelines for treatment and diagnosis of Lyme for the CDC are the ones to blame and that would be an entire essay to explain so what I'd tell you if you're curious enough -- read Cure Uknown: Inside the Lyme Epidemic.  This book explains very well and sites sources and stuff.

And I pray that SOON, the truth will become prevalent so that we can get better treatment and get insurance to cover our healing.  And I hope that when I am well I can help to spread the truth about the disease more than I can now.

Monday, October 17, 2011

like a dog is more important than me

Here's the CDC's map of where the Deer Tick can be found.  They basically say that if you're not from around those areas, there's NO way you could have Lyme disease.  Even this map is quite generous in my experience with doctors. (BTW, I was bit in Northern California and so were other dear ones I know who are very ill)

But look at this map.  This map is what Veterinarians' show as areas your dog can be bitten by a Deer tick and get Lyme and Lyme-related diseases.  They can use medicine on their pets to prevent Lyme.


*sigh*  Come on!

I've been feeling great since being on my first "off" week of meds.  I think I actually did too much so today I'm laying low.  I may go out tonight with my MOPS group to do some crafty stuff (which I love), but it will really be a last minute call.

So you know, I've been praying for you fellow Lymies a lot!  Especially if we've ever had email or blog contact.  You are on my mind!

Wednesday, October 12, 2011

well enough

....to do so many things.  My first outing in such a long time where I take both girls to the pediatrician by myself!

I can't believe how much better I've gotten since my lymphatic massage on Saturday.  By Monday my energy was up to a 60% out of 100%.  That is pretty darn good for me.  And today I'm up to a 70%.  Though this big (to me) outing may zap me more than I wish.

I am just thankful that God has allowed me to improve.  THIS is how they expect you to feel on "off" weeks of meds.  This is a good sign for my body.



The last few days, we went to church, went outlet shopping as a family, turned a mirror into a chalkboard, did mounds of laundry, and took care of two littles.  Quite a lot!  And I'm still standing.  Yay!

Saturday, October 8, 2011

relieved

I got a call at about 5pm on the dot last night and the nurse from the surgeon's office told me that the lump they removed was benign!  I asked her if there was anything about it that was bacterial or Lyme related and she sounded a bit unsure but said there was nothing abnormal about the lump.  So I suppose I'll get the full story at my appointment next week with the surgeon.    But I'm bracing myself to hear that, yep, this lump was not unusual in any way.  Which is fantastic! (just a part of me wanted them to find a Lyme related bacteria in it)




We are so thankful for all the prayers.  We let friends and family know right away last night and there was a collective sigh felt with each response that trickled in over the course of the evening.  It felt nice to know so many people were praying for us and were genuinely concerned.  We sighed too.

But I'll tell you what - as soon as I got off the phone, I sat for a second in silence and the first words I uttered were, "Thank you, Lord."  I didn't exclaim it.  I pondered it.  I know He was in control and that in either situation, whether it had been something ugly or whether it was benign, that God ordained it.  He takes care of us.

"Are not five sparrow sold for two pennies?  And not one of them is forgotten before God.  Why, even the hairs of your head are all numbered.  Fear not, you are of more value than many sparrows.  And I tell you, everyone who acknowledges me before men, the Son of Man will also acknowledge before the angels of God," - Luke 12:6-8

Then I said it again and again as I drove home to tell my husband.  I wasn't emotional or crying or anything.  In all honesty, the weight of trying to get my physical self back up to my "normal" took my mind off of being really apprehensive about my results. And I'm not quite at my "normal" yet but I think I'm close.  I have hopes that on my next two weeks "off" of meds I'll have more energy.

Thanks for praying for us!


Thursday, October 6, 2011

like I'm climbing the hill again

God has answered our prayers and I am no longer "miserable".  I still have energy issues but the lowest low that I was at has gotten so much better over the last few days.  Instead of 0% I think I'm about 40%.  That's a huge difference in such a few days!  It gives me encouragement that after a year of treatment, my body MUST be rid of lots of those pesky bugs that ruined my immune system.  It took me a year to go from 0% to 60% so to jump so drastically in a few days keeps me cheerful.  Today and tomorrow are "Flagyl" days and this drug does a number on me.  I know it's all good, but I am expecting to "fall" a little bit more in the next two days and on Saturday I'll finally get to go get that lymphatic massage that helps me so much with detoxing.

I was looking at pill boxes online yesterday.  I LOVE mine.  It's an AM/PM weekly box that's not huge but has ample room for all the pills I take every morning and evening.  It also detaches each day or a few days at a time if I'm going away for just a day or two.  I like that about it.  Anyways, it's getting old and worn and I thought I'd look for what's out there.  I came across this picture and it made me laugh.  It makes me thankful that I don't take THAT many pills in one morning.  I know some people might and in a lot of ways it DOES remind me of the large volume of meds I have to take in a day....but, gosh!  That is a lot of pills!

Tuesday, October 4, 2011

fallen

It's hard to fall when you've been so high for a while.  I had been feeling so much better as you have seen through my blog posts.  I had told my Lyme doctor that I was feeling back up to about 80%  And I was thankful for those days and trying not to take them for granted.  But after the surgery - WHAM! I have felt worse than I ever have.  I compare it to a time when my liver was all whacked up and I was jaundiced. I literally felt like death was near and just so miserable.  I went from 80% to 1% -- no exaggeration there.

I think recovering from anesthesia AND my body trying to heal an incision cut into my body AND trying to heal from all the dead Lyme&Co bugs just threw my body into a tizzy.  I'm still in the midst of the tizzy. But I'm better than yesterday.  I couldn't say that until today.  Today (or this morning I should say), I don't feel that bloated feeling near my liver/spleen that just makes you feel as though you wish you were in a coma so you could skip this physically awful part of your life.

So many things with my body started reacting after the surgery.  I can't pinpoint one thing that did it.  It will probably be a mystery since there were so many culprits.  But I think now that things are somewhat tamed down, I know that detoxing was the hardest part.  My body was just overloaded with work to do and my body wasn't a "normal healthy" body to begin with.  All my previous detox tricks just weren't enough.  It was like I was so overloaded that detoxing only sloughed off the tip of what needed to be taken away.  My lymph nodes are full of lumps once again.

I feel set back.  But I keep being reminded that it still hasn't been a week since my surgery so my body is still recovering from that, and I'm on a treatment week which is already hard on my body!  So I suppose the real test will be at the end of this week when I am through with antibiotics and get a break.  We'll see how my body rebounds.

It sure doesn't feel great, though, after you've been feeling so so so much better.  I keep focusing on how those good days weren't guaranteed for me and that yes, they were good, so just be thankful for them and focus now on each step.  I can't even focus on each hour -- that's how bad it is.  I can only take each step at a time.

I've been keenly reminded once again at how fallen and broken our bodies are and how in this life they will never be perfect.  And again brought back to the fact that I'm thankful for a Savior who says we only have to believe in His name to have eternal, PERFECT, life with Him in heaven.  My body won't be sick anymore; I won't cry anymore; and best of all I'll be with my God.

Still no results from the doc on the biopsy.  But I surely won't forget to update you on that.  Pray that my body will get ahold of itself.  I can't take care of my kids and really don't have any "good" parts of the day.  Pray that I'll get the help I need during the day until I feel well enough to get through a day by myself!  And pray my mind will stay heavenward and that Matt and I will trust in God's sovereignty in this situation in our lives.
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