Life goes on...

It is a strange reality to be faced with a chronic illness diagnosis.
But here is what I have decided.
On days where I am able, I am going to keep on living.
So yes I will go camping, hiking, play with my kids, sell our house, build a new one, and take advantage of every second I can because there are too many days where I can't get out of bed.
It may mean that I have to take a 2 hour nap after the hike, or I may have to pace myself with activities and rest a whole lot more but it's worth it.
I had the PFO heart closure procedure done a few weeks ago. Everything went so well. And recovery has been better than I thought. My heart rate which was hanging out in the low 50's is now up in the 70's.  The docs said to give it 6 weeks to totally heal and then 6 months to be totally covered with scar tissue and essentially seal the hole. The only down side has been having to take plavix and aspirin so I look like a bruised banana. I tried to go off the headache preventative medication and started having the intense nonstop migraines again. So I went back on it for now.
I am waiting to hear back from my headache specialist because they found cysts all down my spinal column. He thinks that my spinal fluid is leaking into those cysts causing the pressure on the spinal fluid to be low thus causing my brain to sag into my spinal column. There is a procedure called a blood patch that is pretty painful but could fix the leak. I'm waiting to see when that gets scheduled. This could be a big part of the migraines...I've said that before right?
As always there is no easy answer for any of this.  So I'm taking it a day at a time. A dear friend of mine gave me such  an encouraging gift recently.  It said "God is within her she shall not be moved."  The idea being God is in our midst in the middle of whatever circumstance.  He is not some
vague  onlooker, but instead there enduring it with us. In the midst of debilitating pain he is there, in all our joy, he is there caring for us, comforting us. Despite the pain of this world He has us in his grasp. I found comfort in being reminded of that. And while these circumstances have threatened to make me crumble I have not been crushed.
Let's be honest, Most days I could use a major attitude adjustment. I am so thankful for my husband who jokes and laughs and makes things lighthearted even when it's terrible. He has been a constant support and partner through all of this. Never giving up on me and never letting me give up either.  He has been steadfast in caring for me and our children. He has been patient beyond belief. While all of this has been so taxing on our whole family I have found that it hasn't driven a wedge where there could easily be one. We have weathered our fair share of storms and this is just one more that we will make it through together one step at a time.
So here's to living, and camping, and playing, and not taking sweet moments forgranted.

Life goes on...

It is a strange reality to be faced with a chronic illness diagnosis.
But here is what I have decided.
On days where I am able, I am going to keep on living.
So yes I will go camping, hiking, play with my kids, sell our house, build a new one, and take advantage of every second I can because there are too many days where I can't get out of bed.
It may mean that I have to take a 2 hour nap after the hike, or I may have to pace myself with activities and rest a whole lot more but it's worth it.
I had the PFO heart closure procedure done a few weeks ago. Everything went so well. And recovery has been better than I thought. My heart rate which was hanging out in the low 50's is now up in the 70's.  The docs said to give it 6 weeks to totally heal and then 6 months to be totally covered with scar tissue and essentially seal the hole. The only down side has been having to take plavix and aspirin so I look like a bruised banana. I tried to go off the headache preventative medication and started having the intense nonstop migraines again. So I went back on it for now.
I am waiting to hear back from my headache specialist because they found cysts all down my spinal column. He thinks that my spinal fluid is leaking into those cysts causing the pressure on the spinal fluid to be low thus causing my brain to sag into my spinal column. There is a procedure called a blood patch that is pretty painful but could fix the leak. I'm waiting to see when that gets scheduled. This could be a big part of the migraines...I've said that before right?
As always there is no easy answer for any of this.  So I'm taking it a day at a time. A dear friend of mine gave me such  an encouraging gift recently.  It said "God is within her she shall not be moved."  The idea being God is in our midst in the middle of whatever circumstance.  He is not some
vague  onlooker, but instead there enduring it with us. In the midst of debilitating pain he is there, in all our joy, he is there caring for us, comforting us. Despite the pain of this world He has us in his grasp. I found comfort in being reminded of that. And while these circumstances have threatened to make me crumble I have not been crushed.
Let's be honest, Most days I could use a major attitude adjustment. I am so thankful for my husband who jokes and laughs and makes things lighthearted even when it's terrible. He has been a constant support and partner through all of this. Never giving up on me and never letting me give up either.  He has been steadfast in caring for me and our children. He has been patient beyond belief. While all of this has been so taxing on our whole family I have found that it hasn't driven a wedge where there could easily be one. We have wethered our fair share of storms and this is just one more that we will make it through together one step at a time.
So here's to living, and camping, and playing, and not taking sweet moments forgranted. 

Third time is a charm

I have a huge amount of anxiety going to Houston this time. I keep trying to identify why, and I think it is because I am hoping that this procedure is a solution to all or at least some of my symptoms. Here is why I decided to go ahead and get the procedure done to close the PFO.

The theory is that tiny micro embolisms are going through my PFO (hole in the upper chambers of my heart) and going straight up to my brain. This is possibly the cause of the migraines, dizziness, vertigo, blurred vision etc. It feels eerily similar to a TIA or small stroke for whatever reason, just one on top of another at times. There are also doctors who have said that serotonin is usually broken down and processed out of your blood when it goes the right way through your lungs. But because my blood is not doing that correctly and going through the hole to the wrong side there is too much serotonin getting through to the brain which also causes it to go haywire, thus intractable migraines. Unfortunately there are lesions in my brain which show the impact of the migraines as well. 

The latest combo of drugs is helping a lot. I was able to participate in my brothers wedding, travel with my family, walk longer distances, help out at tball practice and so on. All of this feels like a huge win because before this I was pretty much bedridden. These medications are specifically targeting the issues with the PFO which is why I think they are working. One medication is working to make the blood less sticky this dissolving a lot of those micro embolisms. The other is working to block the serotonin receptors so that all that serotonin is not being absorbed. The third is a GI med that is helping to heal the lesions in my stomach. Diet and exercise have been paramount in helping me to function better. Even a trace of gluten and I have a migraine for days. Interesting how the brain and gut are so connected. I think it has something to do with minimizing inflammation in the body. But that's just my theory. So I try to keep from being "glutened" as my friend Sara calls it and it makes a huge difference. My diet is a bit crazy at the moment and I am still figuring it all out. 

The other piece to this puzzle is the POTS diagnosis. And this one has been puzzling. I tested positive for PoTs after a tilt table test. I bet you are wondering what the heck is POTS sounds like some sort of random diagnosis. Postural orthostatic tacicardia syndrome is an issue with the autonomic nervous system. This system controls all sorts of things in your body like....sweating, heart rate, blood pressure, breathing, pupils, digestion, body temperature regulation. 

There is no cure for POTS and it seems to still be fairly new in the medical field. 

It basically means that when I am sitting or laying down my blood pools in my legs or pelvis. When I stand my heart starts racing trying to work super hard to pull that blood up so I don't pass out. The problem is my heart is working too hard. So they put me on a beta blocker which opens up all the veins and arteries and slows down my heart. Once I started on a beta blocker to help slow down my heart I noticed a huge improvement in my energy and the vertigo lessened significantly. Thank the Lord for relief from the vertigo.  Since there isn't a cure for POTS I have to be super aware of how much I water I am drinking and I take salt pills. I also have to exercise even when my heart is crazy all over the place. All these things help to alleviate the intensity of POTs. I am thankful I have not been one of the people who passes out from POTS but it is very common. I stumble a lot and feel close to passing out but I haven't yet. 

So the question is will this heart repair help to alleviate the symptoms of POTS?  The doctors say the two aren't connected. But who knows. 

Maybe if we plug the leak my heart will be more efficient and won't have to work so hard. 

I have been waking up daily with the most blinding throbbing migraine. Once I am up and moving it lessens but every day I have to press through the pain and start the day regardless. One foot in front of the other. 

So here we go. Back to Houston for a third time to close the PFO. In an attempt to lessen or stop all those bad things from getting through the hole and to the brain. Eventually getting me off some of these medications. We are hoping beyond hope that this procedure goes smoothly, with no complications, and on the other side of it that there is some improvement. Even if there is no change by getting the procedure done I significantly reduce my risk of stroke. Win win. 

People ask me a lot how I am doing. I usually shrug and smile and say ok. But the truth is I am thankful to be able to be out and about more. I am excited to have been able to drive for the first time in months. I am relieved to have had a break from the vertigo. I am grateful to know what to feed my body to help it to be the strongest it can be.  This has all been such a crazy journey and there are certainly days when I am so fricken pissed at the weakness and frailty I feel. But if any of you know me you know I am one stubborn lady and as long as there is something left for me to do to try to improve I will keep fighting and working towards that. 

So here we go...I'll see ya on the other side. 

How I'm doing now...

Time for a much needed update.

Since being back from Houston I have been on several medications which have been helping me to get energy back.  I also started exercising again which entailed riding a stationary bike, doing band workouts, light weights laying down, and core work.
The POTS postural orthostatic taycardic syndrome diagnosis has been really accurate in pinpointing my symptoms. The medication for that has really seemed to help as well as increasing fluids and salt intake.  The vertigo has leasened a lot as a result of these changes so I have gotten to drive again. Hooray!
Gluten still remains a big trigger for the migraines. I had some accidentally and had a migraine for three days. I have been really focusing on being grain free, egg free, dairy free, and gluten free but it's been a tough regimen to stick to. When I really stick to it I feel better though and anything to lessen the migraines is a good thing.
We found out this week that the PFO closure procedure was approved so we will be flying back to Houston to have that done this month.   The idea is that the PFO is allowing tiny micro embolisms through that hole to where they shouldn't be and that is part of what is setting of the intractable migraines. It also is allowing large amounts of serotonin through to the brain which makes the brain overloaded and this migraines. If we have the hole closed it will at least leasen the amount of stuff getting through or stop it completely. It's not a guaranteed fix and is still considered experimental but my headache specialist agrees it's worth a shot to see if it helps relieve the migraines at all.
I also had a spinal MRI done this week to check for a spinal fluid leak because apparently my brain is sagging into my spinal column. This is called chairi malformation and even though I don't present with all the classic symptoms I am showing enough signs that my headache specialist is looking into it.  If they find a leak somewhere in my spinal fluid then there will be more things to decide from there.
We are going to my brothers wedding and I can't wait to celebrate such a lovely couple.  I am so thankful that I am healthy enough to go and participate and not bedridden like I have been. I am feelings so so thankful for every little improvement and bit of relief. Nothing puts life into perspective more than when your health is taken away. I have gotten to go to james' tball practice and Ellie's dance recital, have mommy days with my kids, drive to my own appointments, go to the grocery store, and take my kids to the lake.  So many things I took for granted before all this have been so precious to me. So I'm going to soak up every sweet moment I can with all our family and friends during this time. When we get back there are some really exciting changes on the horizon so I am going to keep looking forward with hope. 

Medical anomaly

I was told in 2008 when they found I had pancreatic cancer that less that 1% of people have the type of cancer I had.

I'm not a fan of being in the 1%.  But here I am again...in the land of new science, being a medical mystery, one that I hope has a solution but for now the solution is pretty unclear.

Here is what we found out on our second trip to Houston.

The PFO--hole in my heart-- is most likely the cause of the chronic migraines.
It is 2mm but is considered a Grade 4 which means its a small hole but its letting the largest amount of blood through to where it shouldn't be.  That blood is unfiltered because of going through the hole and it goes straight to my brain.  All those unfiltered things in my blood are making my brain go haywire, thus chronic unbreakable migraines...

The PFO can be closed in some cases--usually they will not close it unless you have had a stroke. (Stroke is a big risk for people with PFO).  This closure procedure is still a possibility for me but its not an easy road to choose that path.  The idea is if you fix the hole, stop the bad chemicals from getting through, maybe stop the migraines--but there is no guarantee that this will be the solution.  The procedures have had mixed results in regards to it helping migraine suffers.  We are basically waiting for science to catch up.  I was told by one neurologist that even 5 years ago they didn't even realize there was a correlation between PFO and migraine.  

The PFO problem left us with the option to try more medications to try to stop the migraines and start taking an aspirin a day to avoid a stroke.  Everyone should learn the signs of a stroke...
http://www.strokeassociation.org/STROKEORG/WarningSigns/Stroke-Warning-Signs-and-Symptoms_UCM_308528_SubHomePage.jsp

Then to further complicate things they also found that I have something called Postural Orthostatic Tacycardia Syndrome or POTS.  This is probably one of the sources of all the dizzy, lightheadedness.  Basically my heart is working too hard when I am standing or sitting up to try to keep my blood pressure up.  Three things contribute to POTS--blood pressure, blood volume, heart rate.  So my job is to increase fluids, salt intake, build muscle doing exercises that are done laying down or seated, and take a beta blocker.  So I pretty much have a holey, ineffiecent heart...thank you very much.

We also saw a really brilliant gastroenterologist while we were there and he was doing some additional tests to confirm the celiacs diagnosis.

So now here are the stats since Jan 31, 2016:
I have seen 20 specialists
I have had a PET scan, 2 MRI's, a CTA, a sleep study, heart rate monitor for a day, tilt table test, TEE, Transcranial Doppler TCD, Upper Endoscopy, and had more IV's and blood drawn than I can even count--one test was 12 vials of blood.

Don't worry I wont leave you with only doom and gloom...in the midst of this we have been met with remarkable amounts of kindness and compassion.
Friends and family who have made specialty gluten free care packages
Homemade cards and notes
Gift cards to help with the cost of GF food
Offers for playdates for the kids
Friends and family sending emails, texts, and calls letting us know we aren't alone and they haven't given up on us
People offering to cover Jeremy's shifts for free so he can be in Texas with me
An envelope of cash to help cover the cost of parking, food, and gas in Texas
A free room in our relatives home, wonderful home cooked meals, and a car to borrow to get to appointments, along with countless hours of listening to us retell each doctor visit, and helping us to sort through it all
Plane tickets
Connections to get in to doctors sooner, emails and phone calls to specialists insisting they see me immediately and not in 2 or 4 months
Hotel points
A listening ear, suggestions and ideas to try
Someone to care for our kids, making them feel loved and supported while we were gone for two weeks, keeping them distracted so they didn't worry, providing endless fun and activities, letting them be kids...
We are truly and overwhelmingly blessed by all the love and support.  There are no words for what it has meant to us.

The road ahead is not crystal clear...it pretty much matches the color of the Texas flood waters we lived through.

I feel very much like the man clinging to the side of the dump truck as it charges ahead.  I imagine he was just hoping to make it through to dry land.  In many ways that is my hope.  These illnesses have wiped out my ability to control and choose how I want my life to be,  it has robbed me of many things, and yet I am still looking ahead.  I am hoping for a solution so I can be on dry land again...