Watching my daughter live life through Lyme

I have recently told my husband that I feel like we are living a “bipolar” life—when it is good, it is very good indeed; but when it is bad, it is like being in the depths of hell. . . .  The first 3 months of this year were great for the most part.  For whatever reason, around the first of April and the first 2 weeks of May, Caity took a nosedive—new symptoms, worse symptoms, more pain than ever.  It felt like we were back at square one, only worse even.  Recently, again, for whatever reason, things have begun to get a bit better.  Still, a lot of pain, but at least a little more energy. 

Which brings me to this topic.  CHOOSING to LIVE with Lyme.  Even through the pain.  Deciding to go to the lake after 1 1/2 years of putting it off because of Lyme.  Choosing to think about going on a vacation that does not involve a doctor visit, in SPITE of Lyme.  Watching Caity do something that she LOVES, CHOOSING to do something she loves, even though she knows she will “pay” for it later.  

Caity has always loved the lake, the water, and being out on a tube being drug around at high speeds by a boat.  This weekend, she could not bear to simply watch the action.  I cautioned her.  I warned her.  But she was determined.  I said, ok, but only a short slow ride.  She knows the signals:  “thumbs up” means faster.  “thumbs down” means slower.  “Hand back and forth” means stop, I’m done.  7.5 mg hydrocodone in.  She hops out of boat and onto the tube.  Took a few tries to get comfortable.  I am watching every second.  Thumbs up.  We start slowly.  Thumbs up again.  We go a bit faster. Thumbs up again.  Hmmmmm. . . .  A new signal---“S shape”.  Meaning give me a few times over the wake.  Thumbs up!!!  I watch my daughter LIVE LIFE.  She did not stop smiling.  Over the wake, and again back to the other side.  Big smiles.  A great ride.  We decide to end her adventure, and the first words out of her mouth were “That’s the most fun I have had in a year and a half!!!”  BIG grins. Tired, sore, but happy girl.   

Sadly, with Lyme, there is always, ALWAYS a price to pay.  Luckily, we have Valium—reserved for the worst pain, and plenty of hydrocodone.  Was it worth it??  Afterwards, she says no.  But for that few minutes, it WAS worth it.  And a lesson in LIVING!! 

I believe with all my heart that she will beat this disease.  It is taking longer than any of us anticipated.  But we are still learning lessons.  All of us.  Learning what is important in life.  Learning to have faith in God’s sovereignty.  Learning to lean on God’s Word, and not worldly values.  Life has been brought down to the most basic level for us.  A good day is no longer one in which we got a lot accomplished, or the house cleaned, or chores done.  A good day is one in which our child has CHOSEN to LIVE despite Lyme, when we are all together smiling, alive, and giving thanks for a simple moment. 

“And we know that in ALL things God works for the good of those who love Him, who have been called according to His purpose.”  Romans 8:28

--Joni

Random Musings

Well, hello!!

I haven't been blogging very much lately and I think that I should, because it's good to get my feelings out, and my mom is counting blogging as a high school elective if I can keep up with it. :P

Lately I have been thinking about how God works. He works in ways that we could never even begin to understand. I never thought that I would be thanking God for my illness, but so many doors for me to help people have opened.

I have lost so many people, but I have gained new friendships, and new relationships I have never thought possible.

I would not change anything, I wouldn't go back in time and not get bit by a tick if I had the choice. Sure, I still have bad days, LOTS of them, but I hope that someday I would be able to look back, and hope that people see that through my strength they can do anything, and get through anything.

Another thing I wanted to bring up was the 20/20 episode where there was a Lyme segment. This girl reminded me so much of me, with her symptoms, and being asked if she was faking.

The thing that bothered me about this episode, was that they put Lyme in this episode of all these weird things. And yes, Lyme is a weird disease, but people with Lyme don't eat rocks, or get mad when our mothers sigh or swallow. Did this bother anyone else, or just me?

Anyway, I don't really know what else to say. SO I am going to leave it at that!!

Have a good night!

What happened to me...

Well... It's 1 am and I am bored out of my mind. Today's been one of those days...

One of those days when I am wondering what the heck happened to my life.. I mean I was supposed to be going to prom next weekend, going to parties, going to school, and now where am I..There have been many blessings during this whole thing, don't get me wrong, but I sometimes wish that I could be normal. For at least one day.

Lately I have been so sick.. I haven't felt this bad in months. I have ALL my symptoms back plus a lot of new ones, that are pretty severe. It's frustrating to me cause I felt like I was starting to get better. My pain wasn't any different but I had more energy. I don't really know what happened.. But let me tell you, it's not fun. In fact, the other day, I was just laying down watching a movie, about to text my mom and I picked up my phone and instantly it fell out of my hands and both of my hands went completely numb for 2 minutes.., I couldn't feel them and I couldn't move them... That happened SIX times!

Because of this, we feel it's important that I go get the CCSVI scan(read back in my posts to know what that is).. I could have something damaged with my spinal cord and it's important to find that out. So my dad and I are going to fly out to Vegas soon and get the scan done.

Oh yeah, to make matters worse, we have BED BUGS. So I've been "sleeping" in my parents room cause it's the only room without bugs. Therefore, I have been sleeping 2-3 hours a night.. And today we are getting the house fumigated and so I can't leave my moms room at all and all the windows have to stay open. In fact right now I am laying on the floor in my moms closet cause of the smell... Super fun.

I am trying to remember that God has a plan. And I know this is making me a stronger person. But I am ready for it to be over. I don't enjoy being in pain every second of my life. I don't enjoy missing out on a bunch of stuff.

Though I do have to say, I have a couple new people in my life that I am big time thanking God for. These people have really made a difference in my life more than I can say.

Okay I'm done for now. Hope yall had a good day.

Hansa Round 4 (Mom posting)

OK, so we did not mean to abandon this blog!!  But have been busy with living life and continuing to battle with Lyme.  So time for a quick update.

Caity has been going back to Hansa frequently for doctor visits as well as Life Vessel treatments.  The LV treatments are recommended every 3-4 weeks.  We decided to continue after seeing the results from them---after each trip to Hansa, she comes home with tons more energy.  Her life has become a bit more full, with occasional trips out of the house and having friends over.  Unfortunately, she still has a lot of pain and if she does go out, she usually comes home and has to soak in an epsom salt/peroxide bath and take hydrocodone.  Also, she is still having to rely on sleep meds, and even those do not work very well. So, lots of energy, but still pain and insomnia. 

Rand and I have been encouraged and delighted by this increase in energy, in seeing Caity out of the house and doing some things with friends.  To us, these are huge steps in the right direction.  We know that fighting Lyme can take years, so we were pretty happy with the way things were going.  However, our wonderful doctor here, Dr. Jernigan, has not been happy with the progress.  He feels that more of her pain should be decreasing, and so he has been trying some different things to that end, looking for the "missing pieces" to the puzzle. 

One of the things he has recommended is having her veins scanned for CCSVI  (Chronic Cerebrospinal Venous Insufficiency).  It is a new direction, though it has been around awhile and it is showing very promising results.  If the veins are occluded, an angioplasty can be performed to open them.  We are still praying about this and have not ruled out the possibility of having Caity scanned.  

Another test he recommended was a blood test done through Genova Diagnostics Lab called a detoxigenomic test.  It basically tests her genetic ability to detox or remove toxins from her body.  We did this, and received the results last Friday.  It showed that she is missing the major gene that is responsible for manufacturing glutathione--an antioxidant that is primarily responsible for liver detoxification.  So, the toxins have been building up in her body and have finally reached the tipping point.  It explains why she could not tolerate antibiotics, and why her pain levels remain so high.  It was a God timing, that we had planned on being here at Hansa the Friday after finding out the test results.  I love seeing all the ways God has worked through this entire experience--even seemingly small "coincidences" such as this!  Not only that, but Caity's Lyme doctor in Texas, actually had already agreed to prescribe Caity glutathione cream on a trial basis ---and when Dr. Jernigan told us that this is what she needed, we were able to go and pick it up at the pharmacy and begin immediately!

Soooo, today at Hansa, Dr. J gave Caity several things that she will most likely have to take the rest of her life.  This is a small thing, if it gives her her health back!!  We have a plan, and a new direction.  Already this evening, she is coming back to life.  It is an amazing thing to watch. 

Thankful, oh so thankful.. ..   For God's hand in our lives.  For the amazing ways He sustains us and buoys us.  For Hansa and the doctors and people here--Dr. Jernigan and Dr. Jowdy are amazing people and God uses them mightily.  I am thankful for their willingness to let God work through them--they are both kind, compassionate, patient, excellent teachers ( a LARGE part of their job!!), encouragers, and have so much wisdom and perserverance.  I respect them both so much!  For the staff here at Hansa, who continually love and encourage Caity and I.  For the divine appointments that I always seem to meet and make while I am here in the waiting room or at the hotel--the amazing people with amazing stories and the willingness to share.  I am blown away.  Another story today from a lady totally healed of Lyme years ago at Hansa.  She has been healthy for years now.  Sweet precious new friends who we see some of every single time we have been here.  Thankful for the beautiful lady who's neck I got to hug today!!!!  Precious fellow Lyme warrior and fighter.  God bless these people!!  Who fight for their lives from a disease that so many doctors will not admit exists in the chronic form.  I am so grateful for the financial means to be able to be here at Hansa. . . . Ok, I will stop, but I am eternally grateful and amazed at the way God has orchestrated our Hansa experiences. 

Tomorrow is a new day, can't wait to see what it will hold.  Love being here, missing all my boys though!  Grateful also for a respite from work and "real life", little time away is a blessing itself. . .  Looking forward to seeing some Hansa friends who are flying in from Calif tomorrow evening, but missing some of our other Hansa family---you know who you are and you know we love you!!!!!

We are SO blessed

So tonight I have just been thinking about so many things. I don't know if ya'll realize it but we all have SO many blessings in our life. I think that many people don't fully realize how blessed they are because they are focusing on what is wrong in their life and what other people have that they don't have. Now I could be completely wrong, but I know that when I got sick, that's all I could focus on. Correct me if I'm wrong, but when a lot is going wrong in your life you tend to focus on the negative, yes?


The past couple months I have realized how AMAZING God is and how He blesses us each in our own way. I think it is amazing how he brings people in and out of your life as HE sees fit. Looking back a couple months ago, when I lost many of my friends, I NEVER thought that good could come out of that. I mean, who would?! But now, as months have gone by, He has brought SO many people into my life that have changed it dramatically for the better. 


I know for me, when I first got sick, I felt abandoned by God or like he was punishing me for something I did. I have really spent a lot of time praying and reading my Bible and every single time, I would feel God telling me "Hold on a little bit longer. Good will come out of this I promise. I have not forgotten you or forsaken you. You are MY child, MY beloved jem, and I am always by your side". This is the first time I have ever told anyone that before. A verse that ALWAYS comes to mind when I'm feeling discouraged is Isaiah 41:10 and it says "So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand."


Some times in the middle of our little mess, we forget how BIG we're blessed.

<3 I feel amazingly blessed by my family and the many sacrifices they have made for me. The countless hours of research, money spent, and support and encouragement. Amazing. 

Here we go again..(:

Wail, here we are in Kansas at my first day back. It's been three weeks since I have been here, and am glad to be back. We are only going to be here for three days this trip, and then back in three weeks again.

Today I started with an appointment with Doctor J. None of my symptoms have really improved and I have actually had a few new symptoms. But I had stopped taking my remedies last week, so we think that may have been why I have been feeling so bad lately. So Dr. J did all of his testing, and I got lots of new remedies. If this round of treatment doesn't show any improvement, he wants me to go to Vegas to get an MRI to see if I have CCSVI which means venous insufficiency in my neck veins. Basically the blood in my head doesn't drain sufficiently out of my head. So we are hoping and praying that this round I show better results.

Then I went and did the Life Vessel. It was the same as last time--my heart went crazy for a couple minutes and then stopped. One thing different happened and it was that my legs were shaking so much. It was weird. But that stopped too. Oh, and my face got really hot.

After my Life Vessel, I did the sauna. I still am not sweating in it, so he gave me homeopathic things to hopefully make me sweat, and I did. But only a tiny bit. And I never could get a fever..

After the sauna, I did the ST8.

And then I did the Ion Cleanse. Except instead of making foot soup, I made hand soup. It was different than I am used too, and a lot more lymph came out from my hands. It was kinda cool. Maybe. Or not.

Then I was done for the day, and so we came home and I really wanted chocolate covered strawberries for valentines day. ( I haven't had sugar in 2 weeks) and so we wanted to find sugar free chocolate, but we couldn't find any without artificial sweeteners in it, so we just got chocolate with the least amount of sugar we could find. Then we went to dinner with some new friends at PF Changs. SO good. and gluten free. I could eat there every day. :) Target did not have strawberries, and so we went on a journey to find some strawberries.

As we were leaving the store, my mom was backing out, and this lady wasn't paying attention and so she backed out right into our car and it was icy. It was kinda scary and i slammed into the door. But everybody is okay so it's all good. The person that hit us was this little old lady and she was so upset that happened. But not too bad damage to the car, and we're all fine. :)

Then we got back to the hotel and my real adventure started.

Dr. J wanted me to do a coffee enema last time I was here, and I refused and refused. It sounds terrible. You are supposed to enjoy coffee and that is NOT sounding like something I would enjoy. SO yeah. Well, this time he said he wanted me to do it.. and i waited the whole day and then I did it. and it was terrible. and I will NEVER do it again. Horrible stuff. But it's done and over with Thank GOD.

I still fully believe in what they do here and I fully believe God is going to heal me. My timing is not His timing.

" O LORD my God, I cried out to You, And You healed me." Psalms 30:2


"Have mercy on me, O LORD, for I am weak; O LORD, heal me, for my bones are troubled." Psalms 6:2


"He sent His word and healed them, And delivered them from their destructions." Psalm 107:20


" But He was wounded for our transgressions, He was bruised for our iniquities; The chastisement for our peace was upon Him, And by His stripes we are healed." Isaiah 53:5


"Then your light shall break forth like the morning, Your healing shall spring forth speedily, And your righteousness shall go before you; The glory of the LORD shall be your rear guard." Isaiah 58:8


"'Behold, I will bring it health and healing; I will heal them and reveal to them the abundance of peace and truth." Jeremiah 33:6


"James 5:14-16 Is anyone among you sick? Let him call for the elders of the church, and let them pray over him, anointing him with oil in the name of the Lord. And the prayer of faith will save the sick, and the Lord will raise him up. And if he has committed sins, he will be forgiven. Confess your trespasses to one another, and pray for one another, that you may be healed. The effective, fervent prayer of a righteous man avails much." James 5:14-16


"And He said to her, "Daughter, be of good cheer; your faith has made you well. Go in peace." Luke 8:48


(: okiee byee(:

My Lyme Story