"Tenacity is more than hanging on, which may be but the weakness of being too afraid to fall off. Tenacity is the supreme effort of a man refusing to believe that his hero is going to be conquered....Remain spiritually tenacious."

 

-Oswald Chambers, My Umost for His Highest

Often, I see the body o Christ put so much into pursuing God or healing. With great boldness and passion and persistence, we cry out to God, begging for physical healing. And in these prayers, there is often a tiny P.S. added at the end where we say, "If it be your will."

 

But shouldn't we switch that around?

 

Shouldn't we cry out to God wit boldness and passion and persistence in a prayer that says, "God, would you please accomplish your will? Would you give me a willing heart to embrace your plan and your purpose? Would you mold me into a vessel that you can use to accomplish what you have in mind?" and then, perhaps, we could ass a tiny P.S. that says, "If that includes healing, we will be grateful."

 

- Holding on to Hope by Nancy Guthrie

Falling down, being still, then moving forward.

First off to update you, I lost another baby. I was 22 weeks pregnant when we discovered that our daughter, Claire Lillian, had passed away. We had family around when I gave birth and everyone present was able meet and spend time with her.

 I did not, by any means, have a simple pregnancy. I was put on 40ml of lovenox once a day with a baby aspirin even before I was pregnant. I was on that for a majority of my pregnancy. A few weeks into my second trimester I met with a neonatal specialist. He increased my dose to 100ml once a day and put me in contact with a hematologist who is a expert in APS. I called and was able to schedule a appointment for a few weeks later.

During this time, I got sick. Very sick. I couldn't keep any food or water down. I had terrible pain in my stomach and back and had to go to the emergency room twice for fluids and morphine to handle the pain. They did blood tests and my liver enzymes were dangerously high. They also tested my gallbladder which came back fine.

When Tony and I went in for my hematologist appointment, I had JUST started to recover. My hematologist told me that my dose was too low and that I needed to double my dose to two shots of 100ml.

We had a follow up appointment with my neonatal doctor immediately after the hematologist. During the ultrasound they discovered that Claire was not developing. She was 3 to 4 weeks behind. Our doctor told us that there is a slim chance she will bounce back, so we needed to prepare ourselves. When we came back two weeks later, she had died.

After dealing with the chain of events that comes with giving birth to a stillborn, I started to revisit my doctors. My obgyn stated that they found blood clots in the placenta. He said that although APS had a role in what happened, we can't ignore how sick I got.

My next appointment was with the hematologist. She stated that I was no where near the dose that I needed to be on of Lovonox. That, in her mind, it is a clear fix. I needed more medicine. The interesting factor is that apparently my APS only acts up when I am pregnant. This means that I only need to take baby aspirin on a daily basis, no warfarin.

We then visited my neonatal doctor. This was the appointment I was the most nervous about. The rest of the my doctors said that he will determine my risk and probability, and if it would be wise to try again. Tony and I had been praying like crazy for clear direction. When we sat down with him he was very clear and to the point - we should try again. He said that it was definitely worth trying again and that there were so many contributing factors that could be addressed. On top of having a increased dose of Lovonox (200ml and a baby aspirin), I would need to be very "low key" during  pregnancy and it would be wise to wait close to a year to try again, for emotional and physical reasons. These doctors are some of the top in their fields, and I trust their wisdom and insight. But, what looks like a clear and simple course of action on paper, means life changing decisions and preparations for Tony and me.

That was in February. Since then, Tony and I have tried to use every moment in this season of recovery to get healthy and safeguarded- our marriage, our finances, and physically. For me, this means taking care of things that, since I was pregnant, went on the back burner. One of these was going to the chiropractor. After Samuel I had started to have lower back issues, and with Claire, they only got worse. A friend of mine's father is a chiropractor, so I met with him and have been receiving treatment. One of this interesting things that was discovered was that I had a shifted 3rd lumbar, which is connected to the reproduction organs. This has been linked to issues with miscarriages. It is another piece of the puzzle, and having this fixed might help in having the Lovenox work better and potentially a smoother pregnancy.

We have our follow-up (potential pre-conception) appointment with both our neonatal and hematologist in a few weeks. Feels so surreal how quickly time is passing.

So here I am again, at the bottom of another mountain, looking back at the area I just climbed and realizing that it was just climbing the base of Everest. We know there is a clear path to the top, but we still need the stamina and faith to climb it. Our prayer is that, however God decides to lead, He may receive all the glory.

Taking a breath....

After being on the move this past month, Tony and I are both in Tulsa trying to get back into the beat of life. During the craziness we were able to sneak in a visit to my hematologist who went over my lab results with me. First off, she confirmed my diagnosis- which is always good to hear that the treatment that you have been receiving was necessary. She then went on to tell me that even though my APS spikes due to hormones, I still have a very high chance of clotting, so that she would feel more comfortable if I was on some form on anti-clotting medication. After a moment of pouting, I sucked it up and realized that she only wanted to prevent me from getting a clot in my lung and having a stroke. She prescribed 40ml of lovenox and a baby aspirin. I can get on board with that.

She then went on to show me something that was a bit of a puzzler. APS means that I have a abnormal amount of Lupus antibodies (I don't have lupus, but it is what they are called) and the new lab results show that I also have a low factor 8 score, which means I am prone to bleeding. So, I am at risk for bleeding and clotting... which you would think would just cancel each other out. Apparently though, your factor 8 can fluctuate, so she ordered another lab to be done to see if it is a consistent number. This doesn't affect my current treatment, but might mean a different approach if I get pregnant.

I will say, the most amazing thing is that we are in a place that we have been praying face to the ground for. We have a cabinet full of medicine- that was impossible to have in Milwaukee - and we have a team of doctors all giving us the green light to start trying. It's so surreal to see how quickly God can change your circumstances if you surrender to it. I am learning so much about steadfastness in this season.

"Rejoice in hope, be patient in tribulation, be consistent in prayer." Romans 12:12

Base Camp

We have been in Tulsa for 2 months now and my schedule has been packed with doctor appointments and labs. My Hematologist referred me to a Rheumatologist who specializes in APS, who was booked until August. Thankfully there was a cancellation and I was able to go in. She did physical examination (looking for rashes and any other abnormalities-which sometimes come with APS) and ordered blood tests. The labs she ordered would take a deeper look into what antibodies are in my system and see if I have any other autoimmune disorders such as Lupus. After about a week I got my test results back and they were all negative! Praise the Lord!

After visiting the Rheumatologist, I still had to wait a week till my OBGYN appointment. Since I am taking coumadin I need to have my INR (which is a blood clotting test) tested regularly. I have been on this drug since November which means I have had to get labs done now for 7 months. Coumadin is not safe to take if you are planning on getting pregnant since it crosses into the placenta and could cause birth defects. Our appointment with the OBGYN will determine what course of action needs to be taken to get me to a physical place where we can start trying to conceive.

Tony took a half day off and we went to the OBYGN appointment. I felt so anxious that I could feel my heart beating out of my chest. We sat in the exam room and our Doctor called us into his office. He stated that after looking at all my tests and history my APS is brought on by hormone changes. This means that I should only need to be on treatment when I am pregnant. Which also means no more coumadin, no need to take unnecessary shots, and that I have a 90% of having a healthy baby with no complications. He said that I will need to take shots of Lovenox when I am pregnant, but instead of the 2 shots of 90ml each a day, he said I will only need 1 shot of 40ml with a baby aspirin  This makes a HUGE difference. It means different sized needles and less medicine which means less pain. 

On top of this- (which I was already a weepy mess)- he told me that although I have APS, a million things could have caused Samuel's death. He said that since I went into labor so early in the pregnancy, there was nothing that he could have done. Translation: this is not my fault. He said nothing I did caused it and there was nothing I could do to stop it. 

This is when he handed me the tissues. 

The past 7 months I have been so attacked by the thought that my first child was doomed to die. That I was a walking time bomb that needed to be fixed. I have carried such guilt over this- especially for Tony, guaranteed to lose his first son. I thought about all of my mistakes that I made- that maybe I had done something to cause this by being reckless with my body. I had the most terrible comments made to me- saying this was my "penance", saying that God only blesses the righteous with children; all things that I knew were complete garbage, but still hit me where it hurts. My doctors never had told me what caused this, they only strongly alluded to the fact that people with APS usually have miscarriages. This was the first time a doctor, someone not connected to me, told me it wasn't my fault. That was so freeing.

My sister Rebekah sent me Proverbs 12:25 after I told her about my appointment...

"Anxiety in a man's heart weighs him down,

but a good word makes him glad."

I am floored by the power that a truthful- honest- uplifting word can have. And how devastating a careless word can be. Lord make me ever mindful of the words that I speak!

My OBGYN called my hematologist and they both suggested doing the panel of labs first done on me (that diagnosed me) again. They both wanted fresh data before moving forward, so again, I went and got some labs done. I am at the point where all my doctors are starting to resemble this...

I did find it interesting that they wanted me to fast before the tests, which last time the panel was taken I did not. They scheduled the earliest appointment possible and I went in to get my blood drained...

 

So.. 13 vials later and a little lightheaded, I hopefully took my last lab test for awhile. I am feeling inspired and motivated- praying face on the ground that these tests come back with good news. Can't wait to see what God does in this next season! To Him be the Glory!

The adventure begins...

One of the greatest lessons I am learning in this season of my life is to embrace fully the trials and blessings that God has given me. This seems like such a simple thing in theory, but I have trained myself to have a spirit of sympathy for those around me who are going through, in my mind, greater seasons of trial or heart ache then I am. The problem with this is that I then take what God had placed in my life for just me and him and begin comparing it with what God is doing in others lives. I begin to think that my different seasons of heartache aren't worthy enough to be mentioned. That I haven't suffered enough to have a story worth hearing. There is a fine line between over-sharing and inviting people (people who love and care about you) to  walk with you on a journey. I have been guilty of over-sharing to the wrong people, and have been burned. My faith journey has been scrutinized as well as praised by people who don't know the whole story. This has caused me to take a step back - to be selfish with my story when in truth, this is God's story. What God has permitted to happen in my life, what trials, what consequences to my sin, and what crazy blessings and opportunities he has given are all for His Glory. I am dust. Unworthy of the grace that has been given to me through Christ. Anything good that comes out of me is solely from the Lord. 

"For I know that nothing good dwells in me, that is, in my flesh. For I have the desire to do what is right, but not the ability to carry it out." 

Romans 7:18

Without Christ I am wretched. I have hurt people, I have made terrible choices, and I have been selfish in ways that had made my heart hard. I have been in the deepest pit, but also experienced mountain top experiences that changed me to my core. 

I feel like I need to confess this to set the tone for this blog. Tony and I are going into a new season of trying to become pregnant. When I first discovered I had APS (antiphospolipid antibody syndrome) I went online to see what the process would be like.  I was so hungry for stories from real women who had experienced what I was about to. Unfortunately I found a good amount of medical information with speckles of real life testimony.  Thankfully I heard stories through friends and family of women with APS who have experienced success and others dissapointment. But yet, still was wanting to know the dirty, gritty, real facts about the process - I hit a dead end. I realized that I was again comparing my story to others and God just wanted me to walk with him through it. 

So here I am, not knowing what type of season I am entering into- but knowing, without a shadow of a doubt, that whatever happens in this next season is all for the glory of God. 

My verse for this season is one that God gave me during the darkest part of our last 6th months.

 

"This illness does not lead to death. It is for the glory of God, so that the Son of God may be glorified through it."

 John 11:4

We have met with my new hematologist - who I love. I have a appointment with a new OBGYN that has experience with APS on June 10th. Until then I have weekly lab appointments to make sure my blood is stable on my medication before I switch over to daily shots. Ball is rolling...here we go! 

Thank you Lord for this opportunity to trust you and give you the glory for what you have done and what you will do in this season. May I ...."Walk in a manner worthy of the calling of which I have been called." Ephesians 4:1