Tuesday, January 31, 2012

resting on the Rock

I guess just about every Lyme mom or dad has to come to this part of their life at some point or another.  Ours is rearing it's head now.  We've put it off for a year just watching and waiting and taking copious notes and getting no answers from our regular doctors (at no surprise to me).

The more I've learned about Lyme, the more my husband and I have been convinced that both our children probably have the bacteria in their body.  But the wisdom of my Lyme doctor told us to wait....watch...."you'll know".  So that's what we've been doing.  I'm not one to jump up and take my kids in to the pediatrician or ER for every little thing, so maybe this has been a bit TOO long in waiting.

Our oldest has definitely shown signs and symptoms for the last year or so and we did get her tested.  Tomorrow we fly to D.C to have our appointments.  Mine, a regular check up (if anything is "regular" about Lyme), and my little darling, to be diagnosed (or maybe get a clean bill of health....I hope!!!).

So please pray for our appointments and pray for Matt and me as we are resting on the Rock (our God) and just hoping against all hopes that our little girl somehow did not get Lyme disease in utero.

Thanks!  I'll give an update when we get back, but I will say that this blog will not be about my daughter.  It shall remain almost solely about my joys and struggles with Lyme.  Your faithful prayers deserve an answer about my little girl, though, so you will get that!

Wednesday, January 25, 2012

like I have a second wind

....after seeing this picture:
Via


Keep on going!   Just around the corner might be your sparkling new, WELL beginning!

Monday, January 23, 2012

breaking for air

I was feeling fairly good for it being my first week of meds last week and then my little one showed some signs of a minor (but could be major if not taken care of) infection.  I thought our pediatrician would tell us to come into the office and do a quick test and then send us home with antibiotics.

I was wrong.  Their office was just closing (at noon!) so they told me to go to the ER.  All of the sudden I felt dragged down with the possibility of pulling along two little monkeys in the germ infested ER.

Thankfully my husband was able to get off early and take our oldest with him since they had to go to AWANA with her that night anyway.  I thought it would be a simple ER visit with the little one and so I packed for such and held her.....for some time....and then it all started crashing down.

Poor thing did NOT have an infection like I thought but had something else entirely.  It wasn't all together terribly serious but it was enough to warrant an admission to Children's Hospital overnight and for the next day.  So from noon to midnight I was comforting a very uncomfortable little girl until my husband could arrive to take over.  And during that time I was very concerned for the little wee one and mentally trying to figure out where our oldest should go overnight.  All the details were worked out on an almost-dead cell phone.  That is a pile of anxiety!

And by the time all the blood was drawn and I.V was placed and baby was calm and at peace that Mommy and Daddy were by her side, I could feel myself needing to just remove myself from the place and re-charge.  I would have stayed overnight with her but the wisdom of my husband and my gut feeling were both telling me that I needed to go try to get sleep in my own bed to be ready for round two the next day.

And so I did.  When I hit the bed I was shaky and weak and in pain.  The pain, I think, was mostly from holding my little girl all day and in all different positions.  I took my evening meds and slept.

I got up early to try to go relieve my husband before it got too late into the morning and by the time I sat through traffic to get there it wasn't as early as I had hoped.  But things were good.  She wasn't ready to be released yet, but my husband had gotten rest and so had she overnight.  Good news.  He told me to figure out what needed to be done that day that couldn't be rescheduled.  One thing was a routine doctor visit for my eldest.

So I did that but raced through it and raced her back to her gracious babysitters and was anxious about the littlest.  When I got there she had done what she needed to do to even think about getting released so we were all a bit less apprehensive.  She was happy to see me but now was also more perky and was needing of someone to lean over the hospital crib and be with her.  It hurt my back so!  But I wouldn't have NOT done it in a million years!

It was so nice when some of the tubes came out and I was able to sit down and hold her!  We were finally released and our little girl was as good as new.  We took her home and felt exhausted; both of us. I felt so sore, but still, I felt it was from all the holding and uncomfortable chairs.  We've been catching up on exhaustion for days.

It's been 5 days since that all began and I would say the last two days, even though at home, have been really tough on my body.  I tried a mud bath detox (more on that in another post) but ended up feeling awful the next day.  When I went to bed last night I had that feeling where all your organs seem to be inflamed and it took me a while to get into a good deep sleep.

This morning was the first day that I felt I wasn't drowning under water.  Whew!  Thank you, Lord!  I started week 2 of antibiotics today.

Even though I've had some down time and feeling pretty bad, I'd say I'm still thankful that with how much stress all of the long weekend was on my body, I'm bouncing back a lot faster than I used to.  This type of deal a year or two ago would have set me back 2 weeks at the least.

Good job, immune system!  You're learning....and that's precisely what we've been trying to teach you.

I sometimes wish that I could "speed heal" - no distractions, nothing - except the meds and me.  I sometimes wonder what it would be like if maybe I could just heal without the stresses of life.  But that would make me a hermit, right?  You know what?  Healing that way would probably be a lot harder and so much more discouraging.

The way it is now, even though there are set backs and things might not be going as fast as I'd like them to, at least I have loving friends and family to cheer me on and pray for me.  I get great cheer-me-up interaction with my silly kids and funny husband.  I think this is the way to go to heal from this disease :)

Thursday, January 19, 2012

well....considering

...considering for the last month I've been traveling. I flew to my hometown to spend 3 weeks there with my girls and husband, and then boarded another plane to go all the way across the country to visit my grandparents.  Then finally flew home.  Home-Sweet-Home!

Now, I had 2 weeks of treatment - smack dab on Christmas week and New Year's week.  With traveling and all we were sort of holding our breaths waiting to see how my body would handle it this year as opposed to the bad last year.

I did so much better!  I definitely had some down days but they were few.  The thing that excited us the most was how my body reacted to travelling.  I didn't need any recovery time!  The next days following being on a plane were normal and I didn't suffer from lagged energy.  We are so thankful to see this progress!

I even got to have pictures taken of me by my brother-in-law (and sister with a second camera) who is an awesome photographer.  And as I look at them, I see that my body is looking healthier.  We are thankful and continuing to pray for complete healing.

My brother-in-law is talented:


Now I am trying to focus a lot on detoxing.  I think that's where most of my problem lies lately.  I feel like the stuff I do isn't enough.  Based on some other Lymies reviews, I am going to try mud baths.  And then of course discuss things with my doctor in a few weeks.

Praying for my fellow Lymies!

Friday, January 6, 2012

wiped out

So some of you know that just two days ago I was admitted to the hospital.  I hate going to the hospital, probably like many of you.  Lymies hate going because a lot of the time we know better what our bodies are doing than the doctors do.

I usually wait and wait until I think it's a serious enough problem to be seen.  Well, this time I didn't want to mess around.

I had very intense chest pain that spread into my left arm.....um....hospital time for sure. Lyme disease can cause heart problems and I wasn't about to just ignore it (okay, I tried to ignore it overnight and then succumbed and went the following morning).

I was out of town, though.  So my mom took me to the nearest ER and thankfully it was empty.  They brought me in and thought for sure the problem would be solved and for sure I couldn't be having a heart attack.  That made me feel better.

Then they did an EKG.  Doctor looked at it and walked away.  They gave me some Torredol for the pain (which didn't do anything) and then the doctor came in and said they'd be admitting me and doing a number of other tests.

They moved me to another room and did another EKG.  Then they gave me Morphine for the pain....it was pretty bad.  Morphine took the pain down to a five.....honestly I wasn't there for pain meds, just there to make sure I wasn't having a heart attack.

While waiting to be taken for an echocardiogram (ultrasound of the heart), I had a "seizure".  One of my half body twitches where I'm sort of coherent.  It got pretty bad and the nurses and doctors were buzzing and then it was decided (as if it weren't before) that I would be spending the night.  Thankfully they got all the tests done before the doctors left for the day.

What they didn't know yet was that I had to get on a plane in two days.  So spending the night and possibly spending a whole day at the hospital the next day was bad because I wasn't NEAR ready to go (packing and such).  One doctor even said I was be there for a FEW days!  Gosh, this whole ordeal was turning into a nightmare when I was pretty sure I was fine since they seemed to indicate my heart looked good.

But still -- echocardiogram.  It was FUN to see my heart from all different angles!  Not something most people get to see in their lifetime.  The tech said "unofficially" that I probably had nothing to worry about.  You know how they aren't allowed to say anything to the patient about whether the ultrasound is bad or something....she was nice, though and tried to get me a dvd of my ultrasound so I could watch it whenever I please :)

Next up was the EEG.  This is wear they measure your brain waves to see if there is seizure activity.  They put a weird cap on and put tons of gel (that is hard to get out afterward) and then for like 20 minutes you lay still and close your eyes.  Well it just so happened for me that my arm
started doing it's violent twitching during this.  I KNEW it wasn't a seizure per say, but I'm happy I was actually twitching when they had my brain hooked up.


And then the MRI with AND without contrast.  That wasn't so bad. I've done it before....twice before.

Then all the docs went home.  No reading of tests, nothing.  Just me left to stay overnight.

The next day we had to scramble to beg them to please let me go; to please get the doctors to come read the tests because I needed to leave the next day to fly out of state.  The nurses were wonderful and I thought we were getting somewhere and then the questions came.

New doctors came in.  Each one asked, "WHERE were you bit by a tick?"  And I told them Northern California.  "WHEN did you get diagnosed?"  "WHAT meds are you on?  NOT doxycycline?  THREE antibiotics at the same time and none are Doxy?"

Oh dear, it was too much for them to handle.  One said I might need to stay longer.  But couldn't tell me why.  Yikes.  I had thought I breezed through without the judgmental stares and questions but here they were.  Then, as soon as they came, they left and finally, the cardiologist and neurologist came to give me the go ahead to leave.

Apparently my heart had some issues but they were NORMAL issues and I needn't be concerned.  My MRIs were normal and my EEG was normal!  So she said that twitching must be stress related seizing.  I could have told her that but I was glad she was concerned to do the EEG.

My whole issues (chest pain and seizing) they decided to attribute to stress.  I KNOW it was stress, I just had never felt that intensity of pain over my heart.  There was a particularly stressful moment while on holiday that I am fairly certain just pushed my body over the edge.

But here I am, on the second phase of vacation visiting grandparents and I have bounced back considerably. I've had the chest pain on and off when things here get a bit stressful with the children but for the most part I have 60% of my energy.  I don't feel awful and I'm not on a treatment week.

So there was my adventure.  And sorry I couldn't think of anything else to write about.