Classic Rock

Thought you guys might get a kick out of seeing the kids dancing the night away. Mom, Dad, the kids and I went to eat this weekend in Kemah at a wonderful new Greek place - next to The Monkey Bar. It was such a nice day we ate on the patio. As luck would have it, a live band was playing on the patio of the Monkey Bar next door so we got to enjoy it was well. I took 3 different videos and each one is worth the viewing I promise. The first one is of Alex and it's very short. He love love loves to dance and here he is dancing HARD and then hits his head.... HARD. He was fine as you will see in the video to follow - it was the same song just to prove he did not have a severe head trama.

As you can see in the next video it's Alex again - only this time I moved his chair out away from the table :)

The last video is Grace in all her dancing glory. One word... WOW!

Hope you enjoy cause we had a blast watching the two if them.

Me "two"

Hey there - yes I too got the "I need to separate my blog fever" from Kristi and Kristin. I have had the Doing it the Wright Way blog all year now and until recently I had been updating it with cute family stories and pics of our lives and then I started getting sick. Once that happened I feel like my blog is a sad spot so here's my solution : Under Construction - my new blog http://donthavealltheanswers.blogspot.com . You can read about my life dealing with Lyme, living and the process that is my life. So if you want update that are about me look there - not just health physically but also emotional and spiritual as well - all the fun family stuff will be left on Doing it the Wright Way. Hope you enjoy one or both :) Until next update.

And the doctor said....

No more monkeys.... jk - Have that in my head today guess cause people are asking what the doctor said. Anyhoo - I did get a call back from the doctor yesterday evening. He went over most of the labs - however the Lyme Panel will not be back for 2 more weeks - which we knew. He wanted to check my thyroid again to make sure it was not too low... it was fine. He wanted to check my B12 again... it was fine so now only one shot a week not two :). As well as all the other things like liver, kidneys, white blood counts and more but you get the idea I think... everything looked fine. He also ran a test called CD57. This test is a standard blood draw with LabCorp - not Quest - and yes it makes a difference. It is not a diagnostic test but is used as a marker for Lyme being active. So the doctor wanted this one ran before the others came back as bonus info. If this test is positive, then it is Chronic Lyme Disease. He said he's never seen a case where it was a false positive. .....If your results are above 200 then no need to worry for Lyme. 0 - 60, is seen in chronic Lyme disease. If you're 20 or less this shows a severe illness. And if you are 60 or higher that means Lyme activity indicates improvement - the meds are working. They tend to perform this test many times during the treatment process to see how the lyme is reacting to the meds and to see if once "cleared" you will have a relapse. My level was 20 for the CD57. I asked what that meant for me and he said we had a big fight on our hands but we're taking the right steps to win. He did say he thought there were co infections along with the Lyme but more info on that will come when the Lyme panel comes back from CA. Co infections are very common for Lyme - the tick usually does not carry just one type of bacteria. So we will figure out a new game plan once we have more results. For now.... I am taking my meds and start the new antibiotic today.
What i feel you need to know....
I know this is going to be ok.
Please know this and dont read this with sadness.
I am not putting these updates up here for pity or fear.
I am updating for the most part because I do not really want to retell this over and over again. I'm happy to talk about it with anyone who wants to but it's just easier not to have to "retell" the whole story each time.
I am also updating this because knowledge is power friends.
How many of you or your friends or family have been bit by a tick?? lots I'm sure. And again I will say... No not every tick carries this bacteria you're right BUT this is a tricky tricky little bug! Not everyone gets the fever and rash after a bite. Not everyone knows they were bitten. Some get sick right away and others like me have it for 25 years and never know that's what's been wrong all along. Im not saying run out and get tested or stop going camping or anything like that. Im just saying be smart about it. Look up the symptoms, be aware of the bugs you come in contact with and dont take no for an answer when it doesnt feel right in your core if you are not well.
I also want you to know that on these meds I will have good days and bad days.
So if I make plans and then cancel please know it's the last thing I want to do - trust me. I have a hard time saying no, feeling like I've let someone down or taking a break - but I will be doing it more often now - which will be super hard for me. The one sure way to know if the meds are working is to make my symptoms worse - NOT better. The meds will slowly kill off one bacteria cell at a time and then that cell will break off into smaller pieces and then my body will fight those smaller pieces. All the while toxins will be released into my body as they break apart - this is why I will feel worse because the meds are working. So I honestly do not know what to expect from day to day. So when I say yes I want to go do a 5K with you on Monday - come Tuesday my body might be giving me a different answer. (LOL 5K who am I kidding) you get the idea :)
Lastly have Faith for me and with me :)
This too shall pass and who knows who I'll get to help along the way :)
More updates to come Im sure

Update and then some

For those of you wondering about the outcome of our latest doctor trip, I thought I'd try to fill you in. It was a very long day and a lot of information was thrown our way. So if I'm all over the place with this please understand :) We spent the night in Crosby on Sunday so that the kids would not have to get up at 3:00 am like we did. So we left the kids in great hands with Nana and headed out by 4:00 am to the small town of Pineville LA. We were told when we made the original visit that we needed to plan on a 2 day trip - so we were ready and packed.
The drive up was nice - thanks to my poor husband whose line of work trained him well for a sleeping wife who did not aide in keeping him awake for the ride. Hey I made it to the TX - LA state line - if you've ever ridden in a car with me for any amount of time you know that's pretty good!! We stopped for restroom and coffee at Mac D's but other than that we made it to Pineville without any stops. We made good time - arriving an hour early so we ate a yummy meal of Sonic and then went back to the office to wait for 9:00 - my apt time. Looking back when they asked if I wanted the first apt time I should have thought about the fact it would take us 4 hours to get there - 9:00 am not the best time - sorry Shane :(
So we didnt have to wait long and met with a nurse who asked several background questions, then a few tests then a video of the doctor meeting with a group to explain Fybromialiga, Chronic Fatigue and Chronic Lyme. I knew I did not have either of the first 2 he talked about but I was there to rule in or rule out Lyme Dieases. After the video we meet with the PA who was very very knowledgeable. He not only asked questions I knew he'd ask, answered questions I had; he also asked and answered questions I never knew I had - if that makes any sense at all. For the first time I felt like a doctor was really hearing me and not judging me or getting offended by my questions or threatened if he did know the answer. Doctors are just people to but when they dont have the answer they often refuse to say "I dont know what's wrong with you" and they surly dont take it a step further to say - "But we'll figure this out." I have had doctors say - You're just too stressed - You're just tired - Labs show every thing's fine maybe it's just in your head see you in 6 months - and Maybe you're just depressed. UNREAL!!!
Sorry got off track there -
So after the PA looked at the last labs I had brought with me he found 2 things that that doctor did not - and had questions about others. He said my B12 was lower than he wanted it to be and that my Thyroid was lower than he thought it should be. He also questioned how they diagnosed my Lupus and my PCOS. So 11 vales of blood later and a Lyme panel kit we are waiting for the results.
He also did a vision test that showed I had toxins in my brain - do not ask me how it works or what the toxins are I could assume to answer you correctly but I am not a doctor and by that time my head was swimming with info. So he said we needed to clear them. We also will be putting our growing family on hold. We do not want the meds to affect the baby in anyway so we will wait for that blessing to come later. I left there with sleep aides - he said that's the first line of defense of fighting Lyme - is good rest. And no I do not sleep well at all so this should help with my energy level. I also left with B12 shots, folic acid (different than what you would take for pregnancy), a cleanser type herbal thing, .... i don't remember it all am Im not sure that you care to know lol - 11 "things" total.
Now the big question you have is .. Is it Chronic Lyme? All signs are pointing to yes. He wants to check out the blood first but he seems to believe yes it is Lyme and I have had it for 25 years - not that it was "active" for all those years but it was there. Next question.... How do we get rid of it? ... You really dont get rid of Lyme. You try to kill enough of it way but you're never really cured. To kill it away, you take antibiotics - lots of them for a long time. Treatment is different for everyone.
How long is long?..... He seems to think it will take 1 1/2 to 2 years to "fix" me :) Not as long as some. He said the "treatment" they had me on the the Lupus all those years made it worse.
When do we go back? .... we call on Monday to talk then again in 2 weeks to talk and then in 1 month from then we will either go up for another visit or go back to see him in his office. This is how good I feel about this, you know how hard it is to get a nurse much less a doctor to call you back with anything?? Well he gave us his cell number and told us to text him day or night. Pretty awesome. They also have scriptures on the handout and they call this their ministry - not their job or even calling - pretty cool!
So that's the update so far. Now here's my soap box:
Lyme is under treated and under diagnosed. Doctors are not trained in finding or treating it. The Texas Medical board DOES NOT believe in Chronic Lyme and you will not get proper treatment in Texas. This is a serious disease and a dangerous one! It is called the great imitator. Look up the symptoms and pay attention. No not everyone who gets bit by a tick will get Lyme that's true. But for those who do, please check it out and dont just believe the doctors word on it - cause they dont know everything.
If you want to know more watch the video below - thanks again for all the prayers, well wishes and happy thoughts :)

Hope Now

To the side of this posting you will find my new "theme song" - below are the words. It's true everything in life rides on Hope - wherever you may find your Hope is your call - but Hope is what makes you take that next step no matter how difficult it is. Hope is what gets you out of the bed each morning and why you still smile even when you don't feel like smiling. Hope/Love/Faith all blend together in my head most days to be honest. I have Hope that things will work out as God has planned. I have Faith that even my miss steps can be put back on track. And I know that Love is God - not just an emotion. It seems as if most of my latest blog have a faith based theme. I have not come to some new conclusion about my spiritual life that I didn't have before - I just think that for me, I've come to the part in my life where I cant just "hope" my faith is enough. I need to feel it, breath it, live it and exercise it daily. It's not for all people - heck it wasn't even for me a few years ago. But look at all I've been through - there is NO WAY - no way it was me dusting me off and standing me back on my feet after some of this stuff - no way! Higher power - faith - GOD - whatever it is you believe in, believe in it and hope it's enough. As a Christian this is where I should be telling you my way is the way??? God is the one true GOD - that's my belief and I'd love to share that with you but I'm not going to shove it in your face and make you take it. I'll share my story if you want it. I'll shed a few tears and laugh a lot of tears as I tell it but it's always your call - how you believe and how you live. I'd be lying if I said if you're reading this blog then you're not on my prayer list - you are by name most likely. On the list for Hope in your life situation or Faith that God will bring you through or LOVE - that I want you to know the LOVE GOD has for you. Life just gets too busy - too messy if were being honest. I'm tried of mess. I know days are not always rainbows and butterflies - trust me I know - but they can be full of Hope. Just a little bit of Hope can bring forth some amazing things in our lives. Listen to the song :)



If everything comes down to love
Then just what am I afraid of
When I call out Your name
Something inside awakes in my soul
How quickly I forget I'm Yours

I'm not my own
I've been carried by You
All my life

Everything rides on hope now
Everything rides on faith somehow
When the world has broken me down
Your love sets me free

When my life is like a storm
Rising waters all I want is the shore
You say I'll be ok and
Make it through the rain
You are my shelter from the storm

I'm not my own
I've been carried by You
All my life

Everything rides on hope now
Everything rides on faith somehow
When the world has broken me down
Your love sets me free

Everything rides on hope now
Everything rides on faith somehow
When the world has broken me down
Your love sets me free
You've become my hearts desire
I will sing Your praises higher
Cause Your love sets me free
Your love sets me free
Your love sets me free

Gotta have RAIN if you want RAINBOWS

I tend to not got on here when what's going on in my life is not sunshine and giggles - or at least close to that. You can see the pattern Im sure if you go back. So this post will be as sunny as I can make it and please read it as such. Most everyone now has figured out something is a miss health wise with me these day. Still no answers but walking in that direction. Thank you for the prayers and support - they seem to come in at the right time to lift me that little bit I need at the right moment. So far what we do have figured out is that I do not have Lupus as once thought and treated. But that's about it. I am still having pretty poor feeling days and hope this will fade off like it has in the past in the near future. However this time I will require more info instead of just being thankful the symptoms have left.
Quick catch up incase you haven't been caught up. At 20 I was diagnosed with Lupus and treated for it for about 3 years. Had Grace went into remission and stayed that way for a few years. About 3 years ago started feeling these different symptoms (numbing of face, neck, back, weakness in limbs, headaches and fatigue) and went to the same doctor who treated me for Lupus. He informed me that either the Lupus was in complete remission or I had been misdiagnosed and had something in the autoimmune family and just had to wait for more symptoms to pop up. He ran mRI and blood work - no answers just glad I started to feel better. Fast forward to now - same symptoms coming back as 3 years ago just stronger and a little bit scarier this go round. Blood work is clear, MRI clear - back to no answers to the main questions but have cleared up what it's not rather than what it is.
For the most part I'm good - I have had a day or two where I was a tad grumpy but I'm trying my best to keep positive about this whole thing. I'm not all doom and gloom - I've come a long way in 10 years lol! Whatever it is will not beat me! I have a wonderful support system and I am learning to use them : ) I have found what looks to be a fantastic doctor that I will go see on Wednesday. Im sure many of you are wondering what can I do? How can I help? And that's because you love us. SO for that thank you! All I know to ask for is prayers and encouragement through this all. We will be great! I have Faith!
What I've learned in the past 3 weeks:
1. You never really understand how amazing the body is until it stops doing what you need it to do.
2. If you allow the "Whys" to run free in your head, you'll need more than a few blood test ran. : )
3. You know people love you but it's times like these that you KNOW people love you.
4. Sometimes the plans we have mapped out for us are not the paths we are to follow.
5. Family is NOT just blood!!!
6. There IS a GOD!!! And HE is AMAZING!

Party time

It's been a few weeks since I've blogged to I thought I'd type a bit. Tonight I went out with the ladies for some Bunko fun. I really enjoy going - this was my 3rd time to be a part of this group and what fun!! Tonight I even won most Bunkos : ) yay me! With me gone, that left Shane home with the kiddos. They ate pizza for dinner and the smell of pop corn hit me the moment I walked in the door so I do believe fun times were had by all. Grace was excited for "date night" with Daddy but was a little grumpy that I was going out "again!" - yes yes I know 3 times in 3 months is a bit much but what can I say I am a party animal like that. As I walked into the quite house all are sleeping sound. It's nice to have a quite full house! The weekend is pretty full with baby showers, birthday parties and school projects with Grace. Looking forward to the family time we'll have and hope to take it easy :)