Wednesday, May 6, 2015

Positive Western Blot... I have Lyme

I kept feeling guilty for not blogging, for not reading blogs, for not doing things.  My world was getting smaller.  I was having more neuropathy.  My midwife with A thought that I had MS, everyone else just talked about my Fibro dx.  I knew I was getting worse, I was forgetting more, having more trouble getting the right word.  I didn't know where to turn. I prayed that God would lead me and heal me.

November 16, 2014 I cracked a tooth on some truly yummy granola.  That tooth just happened to have an old amalgam filling in it that should have been replaced years ago.  I saw a biological dentist the following Friday who wanted me to get a full work up from a doctor in town who's knowledgeable in chelating heavy metals and also to do some blood work to test compatibility with different dental materials.  So the Monday before Thanksgiving, I had the blood draw for the Clifford Materials Reactivity Testing.  Wednesday I saw the new doc who ordered a whole battery of tests.  The night of Thanksgiving that crack turned to a break while I was brushing my teeth.  My black Friday was spent trying to find and open lab while fasting and finally having the largest blood draw of my life.  I felt fine that afternoon but things changed quickly soon after dinner.  By bedtime I was unable to stand by myself and was pretty sure that my liver was the biggest problem.  I made it through the night somehow and was able to talk with my primary doc the next morning.  She prayed with me and encouraged N-acetylcysteine.  Luckily I had some and within a few hours was starting to feel better.  There was some mix up with the lab work and it was about a week and a half before I got the results.  Alas the blood work didn't shed any light on why I was in so much pain.  By this point I was pretty much living on N-acetylcysteine and definitely knew when it was time to take more.  I continued to work with the dentist on a plan to have all of my amalgams out but after too many condescending comments I fired him and started looking farther from home for care.

Around the same time that I fired the first dentist the doc that I had initially gone to for chelation made a comment that unless I had Lyme that all my issues were probably just due to my body not tolerating the amalgam fillings.  So we tested me for Lyme and there it was...  Positive Western Blot.  I meet the NY state criteria for Lyme Dx.  My doctor was strangely excited.  That was in February.  I've been busy dealing with my teeth, trying to find a Lyme Literate Doctor that seemed like the right one to start with and it the middle of all this we realized that our house had mold.  So not only was I dealing with heavy metal toxicity, lyme and what ever co-infections but I was also dealing with mold toxicity.  Crud.

Well I think I've finally found the right doctor to start with.  She's young but she's only 3.5 hours away and is trained in everything that I'm dealing with including the MTHFR that I've known about for years.

So there you go.  That's where I've been.  The rest of the family will be seeing docs for the mold as well.  S is already scheduled for the next available appointment with the doc we picked out for her.  Alas that isn't until July.

I've cried, I've watched way too many horrible stories of Lyme and some cautionary tales of hope.  The thing I understand is that this will be a long road.

Thursday, January 10, 2013

It all turned out really good!

I'm so sorry that it's taken me so long to get back to blogging.  Our second daughter "A" was born August 9 and turned 5 months yesterday.  The week of her birth got a lot more scary after I blogged.  I ended up being airlifted two hours away to a hospital with a higher level NICU to deliver.  We don't know if three different doctors at three different practices were just wrong or if we experienced a true miracle but there ended up being no need for the NICU and we were both discharged the next day.  Breastfeeding challenges have plagued A and me but I am so happy that despite the issues A has never had a drop of formula.  After ended up an exclusive pumper that had to supplement with S, I am so grateful to God for my nursing relationship with A.  It is still hard though, at 5 months I still have to sit upright and use two hands to nurse her.  Therefore, getting two hands to type with is rare.  I'll post a link to our Christmas card shoot on my other blog.  I pray that all of you have a great end to the Christmas season!


P.S.  To those who asked for prayer.  I absolutely prayed for you during labor and I continue to pray for each of you when I'm at my wits end with breastfeeding.

Monday, August 6, 2012

Urgent Prayer Request

Things went haywire this morning.  My midwife will be calling OB's this afternoon to see about transferring care. I'm worried about how S is going to handle this.  She has never even been put down for a nap by anyone other than E and me.  I'm worried that I won't be able to birth vaginally in the hospital.  I'm worried that something is really wrong.  I'm worried about my ability to advocate for myself and my baby as I tend to shut down when stressed.  St. Dominic, please pray for me and my baby.

Wednesday, July 25, 2012

Unpacking Blessings

I got off track on the story of 3 years ago.  Honestly that was on purpose.  There were some things that happened 3 years ago that I'm just not ready to fully talk about yet.  I guess sometimes miracles take time to fully unpack.

Here I am though, hopefully about to deliver this new little one, and I can't help but reflect on what I was doing 3 years ago.  Honestly, I'm not sure exactly what I was doing 3 years ago today but I know that generally I was preparing for a very important trip.  It was a trip that would change my life.  It was the weekend that I was to meet up with 7 other Catholic IF bloggers (4 of which I had never met before).  I had already met AYWH, FT and LH during my surgery trip in late May and early June of that year but I was about to meet TCIE, Sew, FJIEJ and JB for the first time.  I was also about to visit TN for the first time.  I had no idea 3 years ago today how much I was about to fall in love with TN and how important that state would become to me.

Hopefully this little one is as eager to meet me as I am to meet them.  I'm still collecting prayer intentions for labor.

Monday, July 2, 2012

Good News

Thank you for the prayers.  My AFI was in the normal range!  It is still in the high end of normal where most OB's will watch you closer, especially for signs of pre-term labor, but I only have a few days left in the "pre-term" window.  Sunday I will be far enough along for home birth.  So it looks like as long as this baby waits until at least Sunday (with my history that shouldn't be a problem) and I don't have any more really wonky fundal measurements that we're okay.  I don't have the official word from the midwife on that but just knowing that the AFI is lower than it was made me very happy.

I guess that means that it's time for me to ask for prayer requests.  Please feel free to submit prayer requests in the comments of either of my blogs or by e-mail (any e-mail you have for me is fine).  Just like last time I will compile the prayer requests and pray for all requests I have during labor.

Urgent Prayer Request

There are so many times that I should have typed the above title over the last few weeks.  Yet, every time I came here to try to blog, I couldn't remember what the last password I made up was.  This morning I finally reset it again for about the 10th time this year.

The mom that was about to start chemo that I mentioned in my last post passed away on June 12.  It was sudden and unexpected.  She just went to change clothes after a doctors appointment so she could be more comfortable lying down and collapsed.  Her memorial was Saturday on what would have been her 39th birthday.  She leaves behind a husband of 17 years and 4 children ages 4-13.  Then the little boy who I said was recovering from major heart surgery...  Well he passed away on Saturday.  The little girl who is going through chemo is hanging in there but her mama was close to the mom that passed away and the mom of the little boy who passed.  So needless to say, it's been a tough month on my little parenting group.

With all the real tragedy going on around me, it seems silly in a way to be so stressed about my own situation and yet here I am begging for prayer for me on top of prayer for those mentioned above.  I thought I had figured out some of what was contributing to the polyhydramnios and had taken steps to keep my AFI lower.  It was working pretty well.  I could tell on Wednesday that it was lower and then I was not as on top of things Wednesday night and I could tell it was way up on Thursday.  Then I analyzed the heck out of Wednesday and came up with a plan to try to get it back down.  It worked.  By Saturday I could tell that it was back down and it stayed down yesterday.  I thought I was doing things right yesterday and then DARN, I woke up a little bit ago with it back up?!?!  I need it to be down today.  Today I have an ultrasound at 10:30 am to determine if I'm risked out of home birth.  My midwife said that if my AFI is 6cm over normal or more that I'm risked out and have to find an OB.  Granted the last time I had an ultrasound, it was only 1 cm over, but this has still been very stressful on me to say the least.  I'm obviously not against hospitals when truly needed but the idea of having to birth in one is scary to me to say the least.  Also it proves that I don't have this all figured out which scares me.

Last night during the Eucharist a lady came up behind me that I don't remember ever seeing before and whispered in my ear that she was praying for me to have a healthy baby.  It felt like a sign from God in some ways as I had been praying the whole Mass that the baby and I be healthy enough for home birth.  On the other hand it felt sort of like an attack as I hate it when people only talk about the health of the baby and mean alive rather than mentally, physically and spirituality healthy which would mean that ideally you have a calm birth where the mother is free to follow her mama gut without having to defend herself or her baby.  Here that kind of peaceful birth is difficult to obtain in the hospital.

Anyway, here I am stressed out and praying that we're healthy enough to attempt home birth and at the same time trying to trust in God's plan.  I'm also feeling very superstitious.  I've been putting off going to Reconciliation for so long that I've not been receiving Eucharist.  In a way it's been an odd kick start to my faith as the Mass has taken on a new meaning for me and yet of course technically I' m outside the church right now and feeling that I need to be in a state of grace for this baby.  Anyway, with the ultrasound being on Monday, I knew it was a good idea to make it to Reconciliation on Saturday but then I didn't.  So here I sit shoulda, woulda, couldaing my self, wondering if I'd made it, if I would have woken up with my AFI higher again...  I know it's silly.  I know God is not punishing me and that if I'm risked out it is because God is taking care of me and the baby in a way that I don't see yet.  And yet I come back to what if.  Anyway, please pray for me and the baby.  Obviously I'm going to need prayers to make it to Reconciliation and I would really love to still be able to birth at home in a peaceful loving home.

I hope this makes sense.  Here's it's about 4:45 in the morning and I'm fading fast.

Saturday, June 9, 2012

Well crud... Prayer request

Polyhydramnios is not what you want to see on an ultrasound report and transverse oblique is something that you don't want to see past about 26 weeks of pregnancy.  Actually this baby seems to have come up with every malposition all at once.  Sunny side up, head to the upper left and bum in my right hip.  This kid may well be the most stubborn one of us yet.  I still have a few weeks for this baby to turn before it becomes truly worrisome but of course with the high fluid levels, the baby might not have much incentive to turn.  I'm praying that the fluid levels are the same or preferably less in two weeks and that the baby's position is better.

I feel silly for even being stressed about my situation when friends of mine are dealing with much bigger crises. One of the children from my parenting group is recovering from major heart surgery where he almost didn't make it.  Another child from the same group is going through chemo.  And one of the moms from the same group is about to go through chemo.  So thank you Lord for my worst problems being polyhydramnios, a malpositioned baby and a serious lack of energy.

Please pray for good results in two weeks and please pray for the families in my parenting group.