Short but sweet

Save The Date: February 4, 2012

Hello Family and Friends!

An amazing group of people have gathered to host a fundraiser for my little family. It sounds like it is going to be a truly enjoyable evening out! Silent auction, live entertainment, dessert, drinks and more. It is also a great opportunity to gain awareness about this preventable disease.

When: On February 4, 2012, from 7:00 pm -10:00 pm

Where: In the O'Leary Hall at St. Joseph's Basilica, 10044-113 Street Northwest, Edmonton, AB

RSVP: If you are interested, you can buy tickets for $20.00/person or $150.00/table of 10

Contact Megan at (780) 249-0416 and leave a message

If you can't make it and would still like to make a donation, they have set up a Paypal account here:

https://www.paypal.com/cgi-bin/webscr?cmd=_s-xclick&hosted_button_id=LDUGHYPW65BFQ

And since I am not involved enough to answer most of your questions (like, "what do I do if the Paypal link Kate installed on her blog doesn't work?" or, "what should I wear?") you can direct them to whenlifegivesyoulyme@gmail.com and one of the coordinators can help you out! You can also get more info on the Facebook page here.

And last but not least, a small update on my travels and surgery: it has as of two days ago been post-poned until we can find a doctor in Edmonton who has priveledges at a hospital that can monitior and flush my picc line weekly (the catch is they must be willing to work with a long-term Lyme patient!) Any leads in that area and prayers that we find the doctor/hospital we need are greatly appreciated!!

 

Blessings and love!!

 

Kate

"Let the morning bring me word of your unfailing love,
   for I have put my trust in you.
Show me the way I should go,
   for to you I entrust my life."

~ Psalm 143:8

This comes long overdue, although I am sure with Christmas and such that you all were at least as busy as I was and didn’t notice the lack of update.

To be honest, these are getting harder to write (less motivation for some reason) but I do feel bad for keeping you all out of the loop.

Most recent updates: The month of December was very busy, with us making the long drive to Southern Alberta to see our doctor again and get updated prescriptions, exams, etc.  We again were hosted by the Denis family, and I can’t say enough kind words of praise or gratitude towards them. We spread the trip out (as was necessary; I could barely move to get into the car for the trip home), but it was time well-spent. We were able to connect with their son more this time, and get real and valuable advice from him. Sometimes it is hard to hear; sometimes it is just what I want to hear; most of all, it is the truth about what I need to hear, and for that I am glad to have a source like him. Jack, as always, charmed his way into everybodies hearts while we were there, directing his audience to participate at his whim.

Upon returning home, I began my heparin shots. Derek’s advice to freeze the area beforehand continues to be much appreciated; as the area was so numb when my mother-in-law performed the first injection, I didn’t even feel it! Talk about a confidence-booster. Here: give yourself a needle—don’t worry, it doesn’t hurt one bit! In truth, it was one part freezing, two parts skilled nursing hands (of which I do not possess), so the next one didn’t go without pain completely.  With shaky hands I learned the gross truth about just how hard you have to push on a needle to get it to go into your skin (which was a lot harder than I anticipated!) They since have become routine and easier, but not yet to the point where I don’t get nervous and queasy whilst sticking myself!

Next week we make the long trip out to Lethbridge  to  get my PICC line inserted; we will stay for a few days or so after to learn proper care and how to give myself IV treatment, and then backtrack over to see our doctor and make sure all is well before returning home. I’m feeling really nervous about the surgery, and the commencement of IV antibiotics. I think my fear lies in three places; first being the unknown; second, the amount of pain and worsening of symptoms that is to come with the stronger drugs, and bacteria die-off; and lastly, an ever-greatening relinquishment of abilities and control. Time will clear up all three, I suppose.

This song has been stuck in my head and my heart for the past week. I struggle a lot with feeling stuck where I am, worrying that life will always be this way. Yet I know God is in this: He is in ALL of it. And He will be Lord over it, and beauty will rise from it, and I will be made new. Just like the song says. Here it is:

Beautiful Things-- Gungor

All this pain
I wonder if I’ll ever find my way
I wonder if my life could really change at all
All this earth
Could all that is lost ever be found
Could a garden come up from this ground at all

You make beautiful things
You make beautiful things out of the dust
You make beautiful things
You make beautiful things out of us

All around
Hope is springing up from this old ground
Out of chaos life is being found in You

You make beautiful things
You make beautiful things out of the dust
You make beautiful things
You make beautiful things out of us

You make beautiful things
You make beautiful things out of the dust
You make beautiful things
You make beautiful things out of us

You make me new, You are making me new
You make me new, You are making me newYou are making me new

Happy New Year, everyone!

A Grateful Heart

Tomorrow Advent begins! The time of prayerful anticipation as we wait to re-live the birth of Christ; hopefully, learning new ways to seek and love Him in the days leading up to Christmas and beyond.

In preparation, Jack and I have been “reading” the book, ‘Three Gifts for Baby Jesus’ about the three Wise Men and their journey to pay homage to the new King. I say “reading” because it consists mostly of me quickly paraphrasing the overly long text, while Jack excitedly says, “Horsey, horsey, klop klop klop!” as he points to the camels on each page, until we reach the last one with the manger scene.  At the end, I have been explaining to Jack that the kneeling Wise Men offering gifts are there to say, “Jesus, you are God, and we love you so much that we want to give you our favourite, most  important things—the things we love the most.” Then I tell Jack that he would probably give Jesus Ellie (his well-worn elephant lovey), because she is his favourite thing; and that I would give Jesus him, because he is MY favourite thing.  If I were to reflect further, there are many more important things I can offer: the plans I had for my life, my will, my marriage, etc.

Over the course of my illness, I have been blessed with wonderful people who have offered me and my family their gifts.  A great many of them have offered us their greatest gifts; time, in this oh-so-busy world; money, when they could have used it themselves; friendship, in magnitude I have never in my life been so blessed with; and finally, their hearts—whether it be in prayer, a card, a visit, a birthday party, or the gift of insight into their own life that I may have only scratched the surface on otherwise.

We pray each night for “all the people that help us out so much” as we kneel by Jack’s crib. I also pray that you would be blessed for all of your efforts, no matter how big or small they may seem to you. God knows the heart with which you offer them. And what you do for us-- you have done for Him! God’s blessings, and a prayer that you would know the peace that this season can bring; one outside of shopping malls and wish lists; one only found in Christ our King!

“Then the King will say to those on his right, ‘Come, you who are blessed by my Father; take your inheritance, the kingdom prepared for you since the creation of the world.  For I was hungry and you gave me something to eat, I was thirsty and you gave me something to drink, I was a stranger and you invited me in,  I needed clothes and you clothed me, I was sick and you looked after me, I was in prison and you came to visit me...’
“The King will reply, ‘Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me.’   ~Matthew 25:32-36,40

Waiting, Seeking, & Healing

Well here we go! Our appointment came and went, and here I am, trying to piece everything together so as to comprehend what is to come.

First off, we were an hour ahead of schedule. That is the tricky thing when you are attending an appointment in a different time zone! We called back an hour later, only to find the doctor running late. So, we waited 45 more minutes for her call. But you don’t want to hear all this.

The juicy details came rather monotonously. She listed off ALL of the 35 tests she took that came back negative (I think to make me feel better about what was to come), lacing in only a few positives (tests, that is). The summary?

I have Lyme Disease. (Are you surprised?)

 I also have Bartonella, a co-infection. My test for Babesia (another co-infection) came back negative, but the doctor thinks I still may have it based off of the many symptoms I display, and it’s tendency to hide from the immune system, providing a false negative (which means, it may pop up later, once other things are healed). They found Biofilm in my body, which is not only protecting the Lyme BUT...(cover your eyes if you are easily grossed out) aiding an intestinal parasite as well. Are you totally disgusted? I know I am. I actually don’t know how to nonchalantly lead into this next sentence, but here we go: I have low progesterone, which we already knew based off of my NFP charts, and that it is being caused by the Lyme. The tissues around my thyroid are out-of-whack --those are fancy medical terms, for those of you who don’t understand them, send me an email ;); yet another contributor to my fatigue.

None of the genetic factors that can make it especially difficult to treat are present, which is great news.  The activation of clotting is high in my blood though,  blocking the capillaries, creating hiding places for the Lyme spirochetes, and depleting my body of oxygen; consequently causing the seizures; also, affecting my circulation and ability to eliminate waste (and in turn, toxins) very well; and last, and but not least, contributing to my pain levels.  Oh yeah, and those weird dreams that I couldn’t wake up out of? They weren’t hallucinations: they were a type of seizure. Strange, isn’t it? Anyway, the result of these...results (ha!) mean I get to learn how to give myself shots of Heparin twice daily, until I am completely better. And while this still freaks me out, I have had roughly 6 weeks to process the idea, so I am slightly more accepting of it (key word being slightly).

My vitamin B12 is also so low, so I have to get injections in my butt three times a week. My mother-in-law was all too ready to offer to do that for me...funny (she later claimed it was from all of her previous nursing experience, but I still think it might be payback for all of my crankiness!) My folic acid gene is mutant (sounds cool, eh?) which means 50% of my cells aren’t working as they should to heal my body. The remedy is a supplement which bypasses the gene problem to provide my body with what it needs to heal. My adrenals are bottomed out, which causes all sorts of problems, from healing very slowly to severe fatigue. Another test showed I have no good bacteria in my body, a small amount of yeast, and low levels of bad bacteria. All of which aren’t as bad as they could be, and treatable.

And lastly, my body is carrying around viruses,  including high levels of Influenza A, something called Coxsackie, and a mild case of Mono.

All along the Doctor would say one result, and then, “that’s where your pain (and/or fatigue) is coming from,” or, “that is what is causing you so much pain” over and over again with each new result. She actually said there was no question as to why I can’t get out of bed anymore. And as bad as all of this sounds, it’s incredibly validating. Like many other Lyme patients out there, I bounced from doctor to doctor having the severity, source, and even the existence of my symptoms questioned.

My supplements and antibiotics were tweaked, new ones were added, and then the question I can’t stop asking came: “what about IV antibiotics? When are we going to start those?” She said that we should give the heparin two weeks to thin my blood first, so the antibiotics could perform at their finest. Just as she began to reassure me that she believed it was the best choice, the fear began to kick in, and make me second-guess myself. I decided that my desire to get better was larger than my fear, and dove in.

So that is the plan. We won’t treat for everything at once, of course. We will kill off a few things at a time, making sure my blood is thin enough to efficiently get the antibiotics where they need to go, that my body can handle the treatment, and that I have the vitamins, minerals, and supplements to keep my body strong enough to fight this off.  She said she is expecting the classic Lyme to be able to get treated in one year (vs. the original projection of two!) And even though I have all of this other garbage going on in my body, it is less complicated to treat than some of the initial possibilities, so the timeline for those might be shorter than we were initially looking at as well (Praise God!)

Matt had his appointment next. The good news first: he does NOT have Lyme! (I thanked God out loud for that one!) He does, however, have an even more serious case of Bartonella than I do. One of the tests showed that he has had it for more than two years; so, it may have been caused by a cat scratch when he was younger, and it wasn’t until now, when put under all this stress, that it reared its ugly head. The main symptoms: high levels of anxiety, and low levels of energy, which cause problems with concentrating and organisation. He also has huge amounts of Biofilm protecting it. He is going to require 6-9 months of medication (antibiotics and supplements), which will cause Herx reactions in him as well (flu –like symptoms, and/or the worsening of what he is already experiencing: anxiety, lack of energy, and insomnia); to what degree, we don't know.

As for Jack, our sweet little Jack...his blood test to Germany failed to get sent. So, we wait another 6 plus weeks to get the absolute confirmation; BUT, all of the tests that the Doctor has used for years to find markers for Lyme showed nothing; as did the blood work we sent to the States initially. So, while I am not absolutely sure, I have strong hope that we have that blessing headed our way. It was recommended that he get referred to an ear, nose and throat specialist as his tonsils were severely enlarged when we were down in the states, and there was no reason they could find for it. Tests did find four different infections in his GI tract though (including E.Coli and a type of pneumonia); I asked how he got this, and the answer was: from being a baby; crawling on the floor, having a dog, putting toys in his mouth, people not washing their hands before preparing his food, etc. In addition to this, there is a problem with his bile functioning properly (making his poop too acidic, and causing him lots of painful diaper rashes). He isn’t digesting fats properly either. So, the plan for Jack is three months of antibiotics which will simultaneously kill all GI tract infections; a probiotic to add good bacteria to his system; an immune system booster; and finally, some vitamins and supplements to fix his bile issues. Until all of this is cleared up, he is to hold off on getting his 18 month vaccination (she said that anyone with a virus should wait until it is cleared up before they get vaccinated for anything anyway!)

We will receive our prescriptions by mail sometime next week. Matt figures it will take some time to get them processed, which means by the time we get the heparin two weeks underway, it will be closer to Christmas when we start the IV treatment.

I am scared; I feel as though I am not ready to jump into this right away (for once in my life I am grateful for processing delays!)

 I also feel a lot of peace about things. That this is good news; that we are following the right path.

I wonder what Christmas will be like for our family this year? 2010 was a time of waiting for our baby to be born; 2011 a year of seeking answers to my health problems; And, as painful or difficult as it may seem at the time, I think this upcoming year of 2012 will be a one of healing for me and my family. Please pray with us as we grow through this. 

Thank you for all of your prayers and kind words, as we entered into the unexpected, with a bravery not our own. We couldn’t do any of this without the support and love we have poured down on us each and every day.

^“ Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day.

   For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all.

  So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal."

Corinthians 4:16-18

Well I thought I should touch base before the BIG DAY on Wednesday. That's right! Our doctor's appointment via telephone is just two days away!! When you are sick, and stuck at home, time lingers on; days run together; now, it feels like this is pressing upon us so suddenly. That which I have been putting off in my mind is so close. Potentially life changing information awaits: our test results. ALL of them. And as dramatic as all of that  sounds, I am feeling quite calm.

When we were down in the States, as much as we learned, I sort of expected...more. More in the sense that I thought drastic changes in treatment would come immediately after. Knowing now that it didn't work out like that then, and that I have no control over the outcome of what lies ahead (or the timeline in which it will unfold), I have a sense of peace. (Kind of the "ignorance is bliss" type, perhaps?)

I recently read an article about a man who lost a fighting battle with cancer. It was heart wrenching, and enlightening. He missed so many major events in his final days; and, while I could identify with a lot of what he was saying, it helped me to realise this: I am not dying. At one point I may have been; without treatment, that could've be the direction I ended up heading. But I have hope that we are on the right track, on the road to recovery, and to be able to see the big picture again is a gift that man left behind for me: that this is not forever. This is not forever.

You never know who's going to touch your life, or whose life you will end up touching. But I am so grateful for that gift from a stranger.

We are also still on the hunt for the perfect live-in-nanny. Is there such a thing? I am struggling so much with the fact that I have to take this whole "letting go" thing to the next level. I don't know how to reconcile who I want to be as a mother with who I have to be.

Please pray for us? That our hearts may be prepared for what is to come, that God leads us to the person who is just right for our family, and that we may have the strength to keep on fighting for our lives as a family-- no matter what.


  "But you, LORD, are a shield around me,
   my glory, the One who lifts my head high.
  
   I call out to the LORD,
   and he answers me from his holy mountain.

   I lie down and sleep;
   I wake again, because the LORD sustains me. 
   I will not fear though tens of thousands
   assail me on every side."

   Psalm 3:3-6

I don't know how hard this is going to be to write; I have been sleeping 18+ hours a day for the past few days, and fighting off a fever, chills, nausea, and dizziness. A couple of days ago, about 8 hours too early, I got the most intense feeling that I was detoxing from my pain medication; a feeling I used to get from Percocet when I would wait too long between doses; a gnawing inside my bones; restlessness; extreme anxiety...only one thousand times worse than with Percocet. We chalked it up to the sweat from the fever making the drugs less effective, and changed the patch a few hours earlier than specified.

Today, it happened again. Only this time, an entire day before the patch required changing. We contacted the doctor in the States, and she said my symptoms sounded consistent with a Herx reaction; to drink lots of water, and do everything I was instructed to do to battle a herx (anti-histamines, lots and lots of water [which is hard to consume when you are sleeping and nauseated!], taking this pill that helps flush your system out [which didn't come in the mail until today!], etc.)

So, here I am, going between being blazing hot, to a completely frozen drug addict with the flu, feeling like I'm detoxing from extremely strong narcotics. I've had better days, to say the least.

We have been on the search for a live-in caregiver, mostly for Jack, partly for me, and lastly for our poor, is-almost-never-clean-but-for-the-goodness-of-others, home. It has been interesting, stressful, and difficult on so many levels. Stressful for Matt (he wants someone in place before he leaves for his next out-of-town shift), difficult for us to find candidates at all, let alone someone that I would deem an appropriate replacement for, well, ME. I have probably said this before, but my entire life I have dreamed I would be a stay-at-home mother, (and as a friend so cheekily put it the other day, I am ;)), yet this is not in the way I ever would have hoped it would be.

In the process of this illness, I have gone through a journey of acceptance. Of letting go of taking care of Jack full-time; of learning that this is not a minor illness, but a lifestyle change; of giving up my home, my evenings alone; of losing the ability to bathe in private, or drive a car. I was explaining this (to the same friend I mentioned earlier) that I find illness embarrassing; personally, I find weakness in myself at all, embarrassing.(This is a pride issue, I know. Believe me, God is stripping me of that pride constantly!) I said that I guessed I had a hard time admitting my illness for such a long time to others, because I didn't believe it reflected my personality, or who I am inside. She said she thought the contrary. That I wouldn't be experiencing this, or fighting this, or responding to this in the manner that I am if I wasn't still "me" underneath; that my personality is shining through more than ever in light of what I'm going through. And even though God knows I struggle with pride, He knew I really needed to hear that, too.

It is people: their prayers, their comments, their devotion, their friendship that make me love my life. Despite the garbage that this illness throws our way, those people show up, with their strength of personality, and show me that I am not alone; I am not without strength in their numbers; and, that God is love, through them, whether they intended to be witnesses of it or not. And I am so grateful.

And it is in my husband, the unsung hero, the quiet rock that keeps letting Jesus glue him back into the chaotic sculpture that is our family, who keeps pushing me to be my best--sick or not; who teaches me and shows me everyday what real love means, even when he doesn't know it.

So yes, I am sad. I am sicker than I have ever been. I am angry at Lyme disease, and the fact that I still have it. But I am grateful too. For everything good that God has brought out of this. And man, is it good!

Please pray that we will find the caregiver that is right for us, and that our family will continue to find strength in our weaknesses.

"Therefore, in order to keep me from becoming conceited, I was given a thorn in my flesh, a messenger of Satan, to torment me. Three times I pleaded with the Lord to take it away from me.  But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.  That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong."

2 Corinthians 12; 8-10