Choosing Thanksgiving?

Will I choose to give thanks? Even when my heart is breaking? My life (and yours) may be filled with disappointment, unspeakable heartache, and physical pain and brokenness, but there is always reason to choose thanksgiving. Choosing thanksgiving is the path to survival.

To overcoming.
To pressing on through the bleakest of circumstances. 
To not. giving. up.

When I give thanks my heart remembers that despair is not my only friend, that goodness exists, that love is real, and that
there is always hope.


Choosing thanksgiving when loss, pain, confusion, brokenness, or deepest grief speak loudest in my heart is sacrificial. But the irony is that in doing so, in fighting and choosing to search out and embrace what is beautiful and good. To grasp onto those things and say, "thank you." I push back the darkness. Right here, right now, in this dark place the light is breaking in, and I find meaning, life, hope - all things which seemed lost just moments ago.

Giving thanks is not pretending that everything is okay or that the pain is good.
No.
Far from it.

It is a reaching down beneath all that mess and muck to discover that the Everlasting Arms are still the Everlasting Arms. That they are still there.

Firm.
Secure.
Not letting go.

And I give thanks because I am safe. Held. And that security comes to me as a gift. Something I could not buy. Not with all the money in the world. But it cost someone else a great price. Far more than I could ever pay. And because that someone else paid, I am headed toward a Day when all my pain will be eclipsed by glory.

There will be Life. In all its fullness.

Unbroken Joy. Forever
and ever
and ever. 
And for that I cannot help but give thanks.

Where Do I Go From Here?

Hi friends,

A lot has taken place since I last posted, and I haven't been too good at linking my Facebook world updates to the blog world. I have put too many doctor's appointment updates up there over the past few months, so I'm just going to do my best to simply summarize the latest for now.

After visiting two different hematologists and two interventional radiologists (doctors who put in ports, PICC lines, etc.) the following things have become clear:

- My current PICC line should have been removed by now because of the amount of clotting and inflammation that is present. There doesn't appear to be any infection, so the line is still working and safe to use, but it is irritating the vein and preventing the clots from improving.

- A port placement was suggested by the hematologists but highly discouraged by others including the interventional radiologist who regularly puts these in for patients. If the port were to get infected, it would be a whole different story than an infected PICC line, which can be immediately pulled and IV antibiotics started. Not so with a port.

- An attempt to place a new PICC in my right arm was made this past Friday but had to be cut short due to the level of pain and resistance that my body put up. We could try again, but it is not clear whether or not my arm will accept the line until the shoulder region is seen and that only happens once the line placement is already in process. 

Today, my CBC showed concerning blood levels and lowered immune function. It is difficult to know how best to approach my anemia, but I may just need to have an iron infusion this week despite the risks. I'd like to avoid a blood transfusion if at all possible. Tomorrow I will see my hematologist and confirm whether these levels are really accurate or not. In the meantime the doctor says to limit my activity and rest more so my body can keep up.

Thank you all so much for your prayers! I especially need power from God to be able to tolerate drinking more fluids. Without progress in this area I am unable to go without a line or some type of venous access. It seems like a huge mountain, but I know it is not too big for Him! He continues to keep my life.  And I have so much to thank Him for!

------------------------------------------------------------------------------------------------------------

Out of the depths I cry to you, Lord; Lord, hear my voice. Let your ears be attentive to my cry for mercy. I wait for the Lord, my whole being waits, and in His word I put my hope. I wait for the Lord more than watchmen wait for the morning, more than watchmen wait for the morning. Israel, put your hope in the Lord, for with the Lord is unfailing love and with Him is full redemption. - Psalm 130:1, 2, 5-7 

And More FB Updates

So sorry friends that I'm only cutting and pasting from Facebook at the moment. I hope to do more in the days to come.
---------------------------------------------------------------------
September 30, 2013

Hi friends,
Thank you for your prayers! To keep things as brief as possible, my appointment with the doctor who is working on getting to the underlying causes of my condition went well. I was exhausted and feeling sick, but God gave me the strength to communicate. He wants to prioritize building up my bone strength by doing what I can to begin calcium/vitamin D/vitamin K and trace minerals supplementation and introducing simple exercises. He believes that much of the pain and tightness is connected to the state of my bones which he described as "fish bones." Not so comforting. I will likely have additional iron infusions sometime in the near future because the hematologist says I am at 6% of where my iron levels should be.

I saw another doctor this past Saturday (the one who treated my past Lyme), and he is starting me on treatment for my osteoporosis and anemia as well as inflammation throughout my body. He warned me that I will likely feel much worse before I feel better. At least I'm forewarned.

I met with my nutritionist today, and she is helping me put together supplements for the osteoporosis as well as continue working on being able to digest, assimilate, and tolerate foods. It is more complicated being on blood thinners (as many of you know).

My PICC is still intact and being used nightly for hydration, but it has grown very sore and swollen and is showing signs of infection. I may have to get it pulled and have a midline put in which would enable me to continue to get hydration and would not go as far into me as the PICC does. The concern is what will happen with the blood clots if the line is pulled. I need to talk with doctors further about this....

So there continues to be much to pray about and seek wisdom regarding how to proceed. Tomorrow morning I have an early test, followed by PT. I will need much grace, but it always comes at the right time.

I would like to share more, but it's getting late, and I need to run. Thank you all for your care. So grateful for each of you!

September 23, 2013

Thank you everyone! Felt your prayers. The doctor today felt I could leave the PICC in as long as I need it, but I feel like I may need to get a second opinion on that. I'll keep you updated! My arm has been getting sorer lately, but once I adjust my blood thinners it may improve. We'll see...so grateful God is bigger than all of this!

Facebook Updates

Today

Hi friends, I would be grateful for extra prayers today. I have been experiencing increasing issues with my PICC line, and there are differing opinions amongst doctors as to whether it should be pulled or left in longer. The results of my last ultrasound last Wednesday are yet to be confirmed, but it seems I'm still dealing with a serious issue with blood clots around the line. Today, I will see my hematologist at 2:30 and will learn what her opinion is regarding how to best proceed. If we pull the line there is a risk of the clots breaking off and going to my lungs or heart. Then I would likely have to put another line in my right arm in order to get my daily hydration which would likely develop its own clots, and I would have to stay on blood thinners...but leaving the current PICC in also seems to keep the clots from resolving.

I also had a Dexa scan done last Wednesday which labeled me at "extreme risk" for fractures based on the severity of my osteoporosis. This means I need to be extra careful to avoid the smallest falls or accidents.

So, to keep this brief, I would be so grateful for prayers for healing, protection from bone fractures and breaks, and wisdom for what to do with the PICC line and my need for hydration. I don't k now the way through all of this, but I know God isn't surprised and is still at work.

So grateful for your prayers that help me press on....

"And what if trials of this life // The rain, the storms, the hardest nights // Are Your mercies in disguise..."

September 6, 2013

 

Thank you all for your prayers! God is answering them. Still waiting on blood cultures (24-48 hours) but I was discharged around 11:30. My white blood cell count isn't elevated so they think it is just a reaction and not an infection. Praise God!

They did find two clots in my arm and are recommending I have the PICC pulled if they don't show signs of improvement within a week. I also have to call Hopkins tomorrow to see what they want me to do. So I'm still facing some scary things-pulling the PICC could dislodge the clots but leaving it could keep them from resolving-but I know God is watching over each detail and I can lay it in His Hands and trust Him.

Wait on the Lord: be of good courage, and He shall strengthen thine heart: wait, I say, on the Lord. – Psalm 27:14

Thank you again! So grateful.

September 5, 2013

Heading to the ER again with some type of infection in my PICC line. Grateful for prayers. Hard to face more antibiotics and another potential PICC placement. Grateful God has a plan for all of this....

Keep on Keeping On

That's what I'm trying to do these days. It's hard to put one foot in front of the other and keep plodding forward when life doesn't seem to be improving as quickly as you would hope. It's not easy to drag your body out of bed when every part hurts. It's not fun to spend half the night in the ER again. No, none of this is easy, but this life isn't all about easy. It's about pressing on when you can't imagine how you're going to get through another hour. It's about remembering that this life isn't all there is...that this pain isn't forever.

That's what I've been trying to do since I last posted over seven weeks ago. But there are also some amazing things to rejoice in - answered prayers! The two major ones are 1) after a long season of impaired swallowing that would often have me choking on the tiniest sip of water, I am now able to swallow liquids again (and even some tiny pills!) and 2) my weight has increased by 25-30 pounds since May. Many of you might not recognize me, that's how dramatic the change has been. Two years ago, I weighed 65 pounds and was just beginning tube feeds, unable to eat or drink. Now, I have surpassed my goal weight and am no longer on a feeding tube but continue to rely on TPN and hydration through my PICC line each night. I have also been attempting to eat some foods over the past few months and recently met with a nutritionist who would like to help me do my best to transition off of the TPN completely. 

So, this probably sounds very exciting to you, and I do find myself needing to stop and remind myself just how significant and amazing it is that I can attempt these things at all. These things are definitely the result of answered prayer and more! God has brought me so far. So what's next? Well, the reality is that I still have a severe motility disorder which keeps the food that I take in from being digested properly and then moved on through my GI tract. It can be very discouraging to wake up in the morning still full from whatever I ate the previous day. My body is just not able to digest, process, and assimilate my food properly, but I don't want to give up trying. Because my weight is now more than stable and I am able to swallow, I may be able to transition off the TPN and away from the constant risk of infection it presents. But even if I do this, my system is not able to handle the volume of water or liquids I would need in order to stay hydrated, and so I would need to continue that through my PICC line as long as necessary. For the past month or so I have been alternating TPN and hydration from night to night and have developed a significant issue with fluid retention and swelling which does not seem to be resolving too quickly. 

What's the plan? Well, the nutritionist that I recently met with gave me a sample diet to implement as well as some supplements and plans to make adjustments as I go along. It's a very rigid diet that excludes all corn, soy, dairy, gluten, yeast, and sugar which should be pretty easy for me since I haven't had much of those things for five years or more, but my body has grown used to living on sugar (it was the main ingredient in my tube feeds and now my TPN) and as much as I want to get off of it, I think it's going to be a tough transition period. 

I am still on a blood thinner and recently learned that I have a genetic predisposition to form clots. I also have serious osteoporosis and therefore these are two big reasons to avoid falls and injuries. For those of you who are curious, this is why I still ride in the back seat of the car.

I am doing both PT and OT each week and seem to have 2-3 appointments of some sort every day of the week. I'm so grateful for so many of you that serve me by giving me rides. I know it's a lot!

This past weekend, I took the train to visit my brother in Virginia and ended up in the ER for much of Friday night with my PICC line dressing off and the catheter coming out.My chest x-ray showed that the line was still safe to use but it had pulled up more than normal. Basically, its days are numbered. It would be amazing if the day it stops functioning would be the day I no longer need it. Anything is possible for God! But if not, He must have something better in store.

So there is much to be grateful for, much to rejoice in, much to give thanks about. Yet, my present reality is still quite difficult. In many ways, I am less dependent on others than I was even earlier this year - I am able to get around the house and yard with the support of a crutch, make it up and down the stairs in my house, prepare my TPN, and other things, but I am still quite dependent in other areas - I don't drive, can't clean my room, have difficulty making my bed,  I drop things, I can't do much for others, and it is difficult to pick things up from the ground, bend over, or sit for very long. And yes, it has been absolutely amazing to be able to eat some things again, but the steaming peach crisp my family is eating after dinner seems to taunt me. I continue to experience a constant level of pain and complexity of symptoms including severe weakness/heaviness, joint pain, body aches, and strange neurological symptoms. Over the past few days, I have felt like I am regressing in many ways, and it can be so difficult to continue to eat through the scary symptoms or force myself to swallow when I think my throat is going to lock again, yet I don't want to go back. And God keeps calling me forward. 

Practically, this means getting myself on a strict schedule and regimen that will give me the best chance for success with this diet as well as my medicines, sleep, and physical and occupational therapy to build strength. I don't know if it will be successful, and there is no promise that my motility disorder will resolve, but I do know that God is still in control and still up to something better than I can imagine in the midst of it all. 

If you've stuck it out this far, thanks for reading such a long update. I continue to be so dependent upon your prayers. Thank you.

There and Back Again

Hi friends,

Thanks for being so patient with my lack of updates since Wednesday. The past few days feel like a whole week.

To start with, I'm home from the hospital again and grateful. Now backing up to Thursday morning...we decided to leave my PICC line in because it was still functional, and there was some concern about the possibility of dislodging the blood clot if the PICC were to be pulled out. After an iron infusion, a visit with the nutritionist who formulates my TPN, and my first Lovenox shot, I was discharged that evening. Diane Kummer and Patti Brown drove all the way up to Baltimore to pick me up which was so helpful for my family, as they have a number of medical needs right now.

I was told I would have to take Lovenox injections twice a day and then eventually transition to Warfarin (oral blood thinner) which I would stay on as long as I had a PICC in my arm. This presents a whole new set of challenges and mountains to climb, but I'm asking the Lord to give me faith that He IS ordering even these details for good. He knows how it will all work out.

I arrived home around 10:30 Thursday night and after my TPN had been running just a few short minutes both my lines completely clogged. They had been working fine a few minutes before, and I was at a loss as to what to do. I couldn't drink enough to hydrate myself and now had no dependable way to get in my nutrition and hydration. I also started experiencing a small amount of bleeding under my skin (a concern with blood thinners), so I had to call the doctor on call, but she said to just watch it for the present.

Friday morning I tried flushing the lines again but to no avail. My doctor's nurse told me I'd have to come back to the ER since having a clot added a greater risk to everything. So I started packing again, not knowing how long I'd be there.

God truly provided for me by giving me a triage nurse who used to be a PICC nurse and was able to work with my lines to see if she could get them working again. After several unsuccesful attempts, she put in another IV and sent me to x-ray. My mom eventually arrived, and we found ourselves in the exact same room where we had spent Tuesday night. The PA on the other side of the desk did a double take when she saw us. The nurse injected a declogger into my lines which did its work for an hour or so and after that the PICC was once again functional! She also helped me with my Lovenox shot, and we talked with the ER doctor about beginning Warfarin.

I was discharged once again, and my mom and I arrived home around 10pm last night. So grateful I didn't have to stay longer. Despite the drama of the past four days, this has actually been my shortest hospital stay yet.

Today I have had a difficult time getting myself to take my injections, but God has been so patient with me as well as others who have to bear with my emotional messes. Lately, it has felt like every time I start to make progress with something I hit another wall or fall off the horse again, and it's hard to believe I can keep going and find a way through all the added complications. Yet, somehow, in the midst of all this mess, God is here, and He isn't caught off guard or surprised by any of it. How can THIS be the plan? My heart asks this a lot, but He asks me to trust Him still because He knows the way, and He is the best Guide.

Thank you all for your prayers. I cannot thank you enough. They will continue to be such a help in the days ahead as I try to navigate through these stormy seas. It's a good thing I have a Captain who knows where to take me. Just pray I don't go kicking and screaming.

Love you all!

Facebook Updates from Hopkins

July 9, 2013 at 1:10am · I am in a bed in the ER but am still waiting to see a PA or doctor. In the meantime my g-tube decided to pop out so now we have to stick something in so the stoma doesn't close up until we decide what to do. I had a traumatic experience with this at Mayo so grateful for prayers.
-----------------------------------
10 hours ago · Hi friends, thank you for all your prayers. I haven't slept yet and am getting ready to have my gtube replaced bedside. Prayers for this to be successful and not too difficult are much-appreciated. I'm on IV Heparin now but still waiting to hear about the PICC. My GI symptoms have been very challenging, and I've been teary but God is sustaining me. Thank you for praying.
----------------------------------------
30 minutes ago · Thank you all so much for praying. The g-tube was not able to be re-inserted as too much time had passed since it came out so the stoma has begun to close and is no longer big enough to hold the tube. I could have a procedure to put it in again but I am going to hold off on that at the moment since it would require a new incision, etc.

Tomorrow morning the doctors will be meeting to decide whether or not to remove my PICC line or keep it in. Apparently there are some doctors who believe it should come out because of the clot and others who believe it is safer for it to stay in as long as I remain on blood thinners.They are running labs quite frequently to get me to the right therapeutic dose of iv heparin. Then when I go home I would have to initially continue with blood thinner shots until I could take enough of a blood thinner pill to transition off the injections.

At the moment, I am facing a number of hurdles...increased pain that seems to be connected to the heparin, no longer having a g-tube to use for venting, no sleep, the potential of being on blood thinners for the unforeseeable future, unsure if my PICC is still functional or not, unsure where my nutrition will come from, and the list goes on.... Much is unsure but there is also much that IS SURE. God has carried me this far, and I know He is not going to leave me now. He is my Hope.

Thank you for helping me be strong in Him when I have nothing left. I am just so aware of how much I need your prayers to hang on and persevere. Let's keep trusting Him! He knows what is BEST especially when I can't see the next step.
---------------------------
"...my hope, LORD, is in You."- Psalm 25:22

“Blessed is the man who trusts in the Lord , whose trust IS the Lord." - Jeremiah 17:7

Heading to the ER

Hi friends, I'm on my way to the ER at Hopkins with a serious blood clot and my PICC line has to come out.

Prayer requests:
- Wisdom to know whether to put another PICC in the right arm (if I could eat and drink enough I wouldn't have to have it!)
- Grace for the removal of the clot, the blood thinners, etc.
- That they could also determine what's wrong with my g-tube and fix that.
-For a safe removal of the clot, peace, and wisdom for all involved.

Thank you so much! God knows just what He's doing and it will be for good.

Brief Updates

Here are a few Facebook updates...real posts coming whenever I can. 

July 1, 2013

Hi friends, Still coughing but getting through that virus. I've scheduled my first HBOT session for next Monday at 11:45. Praying I can go through with it and then do it consistently over the next month. I had a PT evaluation last week and plan to continue with that as well. Unfortunately, my g-tube accidentally got yanked last week and it may have become displaced. It has been giving me a lot of trouble ever since, and I may end up having to have it re-positioned. I'm still seeking clarity and direction on the next steps, especially when it comes to trying to get off TPN. I upped one of my meds the other day and plan to start another one this week.

There is much uncertainty, and I am so quickly tossed about, but God is an unshakable Rock. All else may shake and fall away, but He remains, firm, steady, immovable. My faith is small, but He keeps it. Thank you all for helping me press on again and again.

Today I want to thank Him for...the kindness of a friend who switched her PT appointment with me last minute when I was running late so I could still have an appointment. watching Epic with my sister, Tiffany. being reminded that we have a promise-keeping God. the assurance that nothing is wasted.

June 24, 2013

Well, this was going to be the week that I started HBOT treatments, new meds, and began focusing specifically on whatever I can do to get stronger. But I came down with a virus a few days ago and that has put everything on hold. Sometimes it seems like every time I try to implement a plan and press forward I have to go 20 steps backward first... you all have experienced this, haven't you? Right now it's quite discouraging, but I need to remember that it's all still going according to HIS plan, and His is so much better than mine. I can trust Him with all the setbacks, too.

What Happened at Mayo...

The Lord will keep you from all harm— He will watch over your life; the Lord will watch over your coming and going both now and forevermore. - Psalm 121:7-8

This was my experience over the four weeks I spent in Scottsdale, Arizona, May 11 through June 9th. I expected to stay for a week or two at most, but it turned into almost a month, as I watched God make provision after provision for me to stay longer and complete various tests.

 

What did I do there?

I spent most of my days at the Mayo Clinic seeing specialists, having tests done, and then having more tests done. Everyone was very friendly and kind, and the volunteers at Mayo were wonderful, along with all the doctors and nurses. I saw a GI motility specialist, a neurologist, an infectious disease specialist, a psychologist who taught me biofeedback breathing techniques to cope with pain, a dietician, a complementary medicine doctor, and an allergist/immunologist. I had at least 10 or more tests done in addition to labwork. There were so many mornings and moments when I couldn't imagine how I was going to make it through the next ten minutes, let alone a day full of tests and appointments, but every time, God was so faithful to pull me through to the next step. Each night, I'd find myself at the end of the day once again, amazed at His unfailing faithfulness once again.

What did they find?

 

Well, there were several things that came to light but nothing too surprising. One of the most significant discoveries is that my small intestine has a significant motility issue and is quite slow (not a surprise to me but now it's actually documented). The emptying study that revealed this was also supposed to give information on the colon, but since the capsule of the radioactive material that was supposed to coat the GI tract never left my stomach, they were unable to collect data on that portion of the test.

My autonomic nervous system has some neuropathy but that's to be expected with whatever is causing my underlying condition.

I am allergic to cats, grasses, ragweed, dust mites, and mold and have asthma symptoms so they'd like me to start using a daily inhaler. This may be part of the reason for my shortness of breath.

I was told I was anemic, had Chronic Fatigue Syndrome, and Fibromyalgia, but none of this was new for me. I had two iron infusions during my time there and am scheduled to potentially have two more at home. I continued to stay on TPN for my nutrition for 12 hours each night (intravenous feeding), but they replaced my g-button to my stomach with a longer g-tube for the purpose of venting (releasing air/pressure from the stomach).

Thankfully, other things were ruled out through the tests such as a more serious muscle disease, immune dysfunction, etc., but they were unable to determine the underlying cause for these conditions.

Where do I go from here? 

I was encouraged to take every step possible towards better health, including using a recumbent exercise bike for a few minutes a day, doing breathing exercises, taking a drug that may help with motility, getting better sleep, and trying to see what my tolerance is for sipping liquids (an ounce per hour) and building up from there. These are all great things which will definitely help me if I am faithful to implement them, but I believe there are other things I need to add to this list as well.

Although I have been ruled out for some of the most common mitochondrial diseases, the neurologist recommended I seriously consider having a muscle biopsy to test for other mitochondrial diseases or have one of my siblings do the biopsy. This is something we could consider down the road.

I had a follow-up appointment with Dr. Mozayeni here in Maryland this past week, and he believes he can help me move towards health with some very specific treatments. The first thing he'd like me to do is to have Hyperbaric Oxygen Treatments (HBOT) three times a week for several weeks to a month. The hope is that the extra oxygen that is made available to my cells while I spend time in the pressurized chamber will bring healing to organs, cells, decrease inflammation, and possibly increase my GI motility. He believes I have some type of protozoans in my system which most likely came with my original Lyme disease and babesia infection and are continuing to make me sick. There was evidence of this on a blood test I recently had done. I also may have a fungal infection. With either one, I would need to be treated with strong drugs, and my system is not strong enough yet to handle these. In the meantime, he wants to do all he can to build me up by doing the HBOT, improving my sleep, regulating my thyroid, and getting more protein into me.

I am also praying for clarity and faith to step out in a specific path when it comes to trying to get my body to accept food/drink and determine what diet could be the most successful/healing. I am still leaning towards the GAPS diet, but diets high in fat are very difficult for people with motility disorders. I have been trying some baby food squash and other non-dairy and low fiber foods and am so grateful that I've been able to swallow these things, but it has been very difficult for my system to take them. I've gained a good ten pounds or more lately, and haven't been at this weight since prior to 2008. Now I need to get physical therapy going and get some muscle back.

I could keep going, but I think this post is already getting quite lengthy. There is simply no way I could begin to thank you all for the countless prayers that you have lifted up on my behalf. I hope you know that they truly sustained me and were heard and answered!

It has been hard to consider the path ahead as I realize just how long it could be, but every time I begin to crumple and despair, I hear Him reminding me that I only need look at this present moment. There will be strength for the next one when it arrives. The quote below has been a great source of hope for me lately. I pray it encourages you as well.
-------------------------------------------------------------------------

It doesn’t matter how complicated, how desperate, perhaps even hopeless your life has become. No matter how overwhelmed you may feel by your problems, if your trust is in Jesus Christ, you can be sure that he is praying for you now and through that prayer he will provide for you the resources to bring you relief or enable you to carry on.

The most important thing that you and I need to learn about prayer is this: first of all and ultimately, prayer is not something we do but what Jesus does for us.

— Richard B. Gaffin
"Christ, Our High Priest in Heaven"

*I'll try to write a separate post on some of my non-medical highlights from the trip. :)

Home Again

Dear friends,
I am looking forward to sharing with you all the things I experienced and learned over the past four weeks in Arizona. Thank you for your patience with me. Understandably, everyone wants to know what the doctors at Mayo had to say and if they found anything new. Your care and support over this long journey mean more than words can say.

There is much to pray over as I seek to find the way forward. In all honesty, I have not yet been able to go over all my doctors reports or share details with my family. I need some time to process things and determine where to go from here. So, if you see me and want to know all the details I may not be quite up to sharing it all just yet, but please know how grateful I am. Your prayers have helped carry me through this past month.

If you want a brief summary then here it is: Mayo was not able to find anything dramatically new or necessarily "breakthrough material," but I didn't necessarily expect that to happen either. They found some neuropathy in my autonomic nervous system, allergies, and most significantly, a severe dysmotility of the small intestine. I will try to put together a more detailed update as soon as I can.

In the meantime, your prayers for endurance, wisdom, grace for transitioning, and more would be much appreciated. The same God Who provided for my time in Arizona is the same God Who will provide for every step to come. Thank you for helping me press on.

It is better to take refuge in the Lord
than to trust in humans.
I will not die but live,
and will proclaim what the Lord has done. - Psalm 118:8, 17

Facebook Updates from the Past Week

Sorry, I haven't been able to write lately. Here are my Facebook updates from the past week:

June 8, 2013
Packing...has it really almost been a month? Going to miss so many dear faces here and grateful for the ones waiting back home.

June 7, 2013
Hi friends, back at Mayo for my second iron infusion. Larger dose this time over the next two hours. Didn't feel well with it last time but God always gets me through. I get weak, dizzy, short of breath, queasy, etc. but grateful I'm not having an allergic reaction. Going to track down records after this and then I'll be finished for now. Hope to fill you all in more in the days ahead.

June 6, 2013
Sorry for not updating yet but back at Mayo now for an appointment and then two back-to-back pulmonary tests. Feeling pretty horrible and need His strength to communicate and go through the tests. He always gives just what is needed! Love you all.

June 5, 2013
On the way to Mayo for two more tests that they were able to squeeze in today. Answered prayer! Struggling with pain from Monday's procedure but God is sustaining me.

June 4, 2013
"With Christ in the vessel, I smile at the storm." -Streams in the Desert

Christ said, "Let us go to the other side" -- not to the middle of the lake to be drowned. -Dan Crawford

Thank you all for praying. I felt like the waters were going over my head this morning, but once AGAIN, God was faithful and brought me to "the other side." Am sore and worn out from the procedure and still facing all my symptoms, but now I have a new tube in for better or worse. Not sure what I am going to do from here but just taking it one moment at a time. Can't fly out tomorrow but sometime soon. So grateful for each of you and amazed at His mercies today in the midst of it all.

June 3, 2013
Hi friends, had an unexpected issue with my g tube this morning and am headed to the hospital for a procedure to have it replaced. So grateful for prayers as this is all quite unexpected and difficult to press through. Thank you!

More Tests Tomorrow

Hi everyone, today was scheduled full, but I was just too worn out to make it so I had to cancel my appointments. Some of these things can just be done back home. Tomorrow, I have a 10am follow-up with my neurologist, followed by another GI procedure from 12:30-2:30. Can't wait to be done.

Yesterday I had my first iron infusion, and the side effects have been difficult. I will have 3-4 more of these over the next several weeks even once I'm home again. It may take a while before I feel the benefits but they will eventually come.

So grateful for each prayer. My picc line is no longer clogged. Thank God for answering that prayer.

Needing endurance for these final days. Geri flew home this morning, and another wonderful friend has taken over assisting me. God never stops providing. He is an unfailing Anchor in the stormiest of seas.

Still in Arizona

(Update copied from Facebook-sorry it's so brief and there are gaps.)

Hi friends, I cannot thank you enough for your prayers. God has answered more of them! A friend in the area who happens to be a nurse has some time off work beginning Thursday, so she has offered to come stay with me after Geri leaves this coming Thursday morning. I had an appointment with nutrition today and just received a phone call about a potential cancellation opening for tomorrow with allergy/immunology (the first available had been June 5th). Friday I have another unpleasant GI procedure/test, and I am still awaiting results from blood cultures. It's looking like I will stay through the weekend, but I have not yet booked my flight home.

Every day there are new mercies for the things I think "impossible," and God's faithfulness is amazing to watch. I also would not be honest if I failed to acknowledge how incredibly difficult it is to fight onward each day. Today was especially hard but His grace truly IS sufficient - again and again and again. It never runs out. Soooo grateful for each of you and your prayers. There are no conclusive new findings yet but God knows what He's doing. I sure don't. :) So glad He's in control!

Many Helping Hands

I just have to take a moment to list some of the ways I have experienced God’s mercy and provision through the care of others over the past few days.

• Geri’s husband, Mike, drove us to the airport after just finishing a two-day drive a few days before to bring his daughter home from college.
•  Hannah, Geri’s daughter and my friend, coming along for the ride to the airport and helping us with all the luggage.
• Mom packing until after 2am yesterday morning and then getting up early to do more.
•  Mom training Geri how to do my TPN.
• Geri investing all the time to learn. 
• My friend, Sarah, taking the time to help me go through clothes, taking me to CVS to get a new cane when mine started causing a blister, and then coming by before I left to fix my crutch with a new tip and grip support for the handle.
• Geri altering clothes so I’d have some things to wear in AZ.
• My sister, Tiffany, coming by last night to help me with my hair and say goodbye.
• My dad driving around to find me a new phone when my old one hit the wall yesterday.
• My friend, Rhoda, creating a prayer sign-up for me. My brother, Michael, helping me up and down the stairs.
•  My friend, Kathy, stopping by to say goodbye even though she has her own health struggles.

And at the airport yesterday...

• Geri was struggling with pushing our carry-on’s and handling my crutch and pillow while also supporting me.  After realizing that it probably would have been better to keep a luggage cart we suddenly came upon one that someone had left behind. God is so kind.
• When pre-boarding, one of the pilots offered to help us by taking all the carry-on’s we were struggling with himself so Geri could focus on just supporting me.
• Though the flight was supposed to be completely full, God gave us an open center seat so I could shift positions more easily.
• God gave me a VERY kind flight attendant.  Once she heard that I have trouble breathing while sitting and would need to stand as much as possible, she said that if the air pressure made me too uncomfortable, just to let her know and she would ask the captain if he could fly at a lower altitude. J  I never knew that was something they would consider doing. She also allowed me to keep my crutch for support right up until take-off. Then she stored it for me and offered to get it down whenever I needed it.
• The flight was long but uneventful, and God truly gave me grace to get through. When we landed, several of the flight crew told me they would be praying for me, and a kind member of the airport staff wheeled me to the baggage claim and then helped us get the luggage into the car.
• And the list goes on.... :) Thank you for praying! These are a direct result of your prayers.

Heading to Scottsdale

As I write these words, I am presently flying somewhere over the Midwest on my way to Scottsdale, Arizona. I did not anticipate this trip to the Mayo Clinic, but God surely did. And He has gone before me and ordered each step. For years, my grandfather has encouraged me to go to Mayo in Rochester, Minnesota, but I just didn’t feel it was the right time to travel somewhere else while I continued working with Hopkins. It has been almost two years since I had to move to feeding tubes and TPN and almost 12 years since my health struggles first began. A few months ago, I began considering whether it was time for me to look for additional medical help at Mayo or elsewhere and thought the Jacksonville, Florida Mayo Clinic might be the easiest of the three, but I wasn’t sure if it was the best medical fit for my situation or not. And now, through an amazing chain of events, I find myself headed to Scottsdale.

How did this happen? A doctor friend spoke very highly of the GI motility doctors at Mayo in Scottsdale and kindly talked with them about my condition. This past March I was able to get appointments with these doctors for this very week in May (it usually takes longer!). A kind friend from church offered to pay for my flight. Another friend began contacting friends in Arizona regarding help with housing and transportation. I was offered a place to stay with a wonderful family only ten minutes from the clinic! (They actually were active members of my church for over 20 years and had moved from Maryland to Arizona about six years ago, but I hadn’t kept in touch with them.) When I connected with them, I heard that they had recently been considering asking me if I wanted to come out to Mayo and stay with them but had thought to wait, knowing how many suggestions come my way. Then they heard I was actually looking to come! So God had already been making a way for me before I even knew it.

The final big piece was who could travel with me, prepare my TPN each night, and help me with daily needs. My parents both wanted to go, but the multiple needs at home between my handicapped brother, their own health, and more were just so great that it wasn’t going to work. We knew that if God wanted me to go, He was going to provide someone. A few days after it was determined my mom couldn’t go with me, another mom, Geri Carroll, offered to be my traveling companion. I was amazed once again at God’s specific care and provision for my needs. And it didn’t stop there! My church covered the cost of her flight, the Nam family offered us rides and the use of a car, and my dad helped me pull together all the medical records I needed to take.

I don’t know what God has in store for this week, and I wouldn’t be honest if I didn’t acknowledge that I’m afraid at times. Sitting for five hours on the plane is almost impossible with my pain, and I’m not excited about doing a ton of difficult tests or sharing my story again and again with new doctors. But God has said “this is the way, walk in it,” and so by His grace, I am seeking to do that. I am overwhelmed at the way each of you has sought to carry me in prayer and continue to help me fight and not give up. This road has been long and hard and oh so wearying, but we have a God Who never fails us. And He is greater than all. I am excited to see what He has in store this week. 

Brief Update

Hello friends,

I had hoped to put together a more detailed update, but my strength is already gone. Tomorrow morning I have a 12:15 follow-up appointment with a doctor I saw a few months back to look more closely at the possibility that I'm still dealing with one or more of the coinfections that come with Lyme Disease, along with other things that could be the underlying cause of my gastroparesis and GI/neurological issues. I have a lot of questions for him, and I will need much strength to communicate.

I recently saw a new motility specialist at Hopkins and am considering having a few more tests done, but he was not able to provide me with anything too encouraging at the moment. 

As some of you know, I have been seriously praying about going to the Mayo Clinic to get a fresh look at everything. They are the best in the country for GI issues. Well, God has recently opened up a door at the Scottsdale, Arizona location, and they have scheduled me for the week of May 13th. I don't know if they will have answers, but it appears that God is leading me to walk forward in that direction and see what happens. I will share more of the story as I can. It is so encouraging to see how He has gone before me to make a way. At the moment, I have not yet booked flights because I need to find someone who can travel with me and help me during my time there. My parents would love to go, but there are significant needs at home right now, and my brother, Nathan's seizures have worsened.

One praise report is that I have been consistently sipping 3-6oz of chicken broth each day and hope to keep this up. On the other hand, my pain, GI, and neurological symptoms are increasing and worsening by the day, so it is very difficult to fight through. I have also been very anemic, so I am trying to take iron supplementation to see if I can avoid intravenous iron but that will be determined at some point this week. When I focus on how hard it is I always start to sink, but God never lets go of me even in my most overwhelming and fearful moments.

Thank you all for your prayers which continue to carry me from moment to moment! I look forward to sharing more of His faithfulness in the days ahead. Right now, I would be so grateful for prayers for peace, sleep, hope, relief, endurance. Whatever God lays on your heart.

He is good.

New Appointment Tomorrow Morning

Hi friends,

I'm sorry for the long pause in updates again. I have been so grateful to be out of the hospital for the past three weeks, but my symptoms have been so severe that it has often been a moment by moment endurance battle.

I have not yet made a decision about the surgical j-tube and still need to learn more about it. I continue to receive my nutrition through nightly 12 hour TPN which has been very difficult. It has been a nice blessing to not be connected to anything during the daytime, though.

Tomorrow morning, I leave the house around 7:15am for a 9am appointment with a new motility specialist at Hopkins. I would be grateful for prayer that God would give wisdom through this appointment and strength to communicate clearly and know what questions to ask.

Depending on the outcome of this appointment, I am seriously considering going to the Mayo Clinic there are several more pieces yet to fall into place before that can be determined. I hope to have more clarity through the course of this week.

God has been helping me sip a few ounces of chicken broth each morning for the past week, and I am fighting to continue that and eventually increase. Right now, it is not working too well, but I'm able to get it down, and I am grateful.

It has been wonderful thinking this Easter weekend on how much hope we've been given in Christ because of His death and resurrection. One Day all this will end, and my body will be able to eat, and drink, and run, and dance, but until that Day, I want to grow in trusting Him more and loving Him more than anything else in this life.

Thank you all for your prayers. They have been a constant source of sustaining power.

Grateful.

Home Tomorrow?

Hi friends,

Thank you so much for praying for me today. My parents came up to be a support, and we spent most of the day waiting for my doctor to meet with us. He eventually did late this afternoon and said that he would like me to have a j-tube surgically placed. This is different than what I have had before. All of the prior procedures have been done by endoscopy and have not required sutures, a surgeon, etc. He says that my anatomy has changed and the tube being threaded down through the stomach and into the jejeunum is no longer working even though he tried to anchor it in with clips this past Thursday.

I need some time to pray about this and learn a little more before moving ahead, so I let him know I wanted to wait. In the meantime, he plans to pull out the messed up tube tomorrow morning at 8:45 and replace it with a G-button which will still give me access to my stomach. I will be going home from Hopkins on TPN for my nutrition again. After a few days of cycling, I just reached my regular night cycle of 12 hours last night.

Apparently, one of the reasons I felt so much sicker following the procedure last Thursday was that my doctor had so much trouble trying to get the tube to stay down where it was supposed to be, and it required more anesthesia and jiggling around. At least there was a reason for why I felt that way!

The past few days have been especially challenging as I have had the tube taped up and not functioning, while trying to adjust to the TPN again and fight through escalating symptoms and pain. Through all the desperate moments, God has not failed me, and He has sent the help I so desperately need. Sometimes it doesn't feel like that, but He never allows me to utterly sink beneath the waves.

So tonight, I need rest and then courage to continue to walk ahead after being discharged tomorrow. No one wants me to stay on TPN again. The risks are high, and I feel awful on it, but it keeps me alive. I will need wisdom to consider the j-tube surgery and if so, whether to have it done at Hopkins, etc. It is hard to think about going through with it, knowing that there is no guarantee that it will be successful on the other side, but if it was successful, it would be better for me than TPN.

All that to say, I have constantly been longing for freedom from all of this and am no hero. I don't want to keep fighting. I just want it to be over. I want to be free. It IS more than I can take. But it's not more than HE can take. He can enable me and promises to never stop doing it. Thank you for helping me not give up again and again.

So grateful. I love you all.
--------------------------------------

"For NOTHING is impossible with God." - Luke 1:37

Unexpected Things

Hi friends,

I learned upon waking yesterday that I would have to be admitted to the hospital following my procedure so that my electrolytes and things could be monitored once TPN was restarted. I hadn’t anticipated this, so it was definitely a struggle for me. I felt so sick that I couldn’t imagine going through a procedure and then staying in the hospital again with no sleep and all of that fun stuff, but God was merciful and gave me the power to take one step at a time. He is strong in our weakness.

I had a harder time with this procedure than anticipated or than any previous ones. For some reason, I was more nauseous, weaker, foggier, and in greater pain on the other side than I’d ever been before, but part of that was probably because they intubated me for safety and took some additional biopsies. I made it up to my room around 6pm yesterday. I have a sweet roommate with pneumonia who likes to eat and watch lots of TV, but I get to be near the window.

This afternoon I was still struggling a lot when my mom arrived and helped me go downstairs to walk around a bit. We had only barely escaped when my tube starting shooting out of my stomach at an alarming rate. We managed to push it back in most of the way and returned to the room to page the doctor.  When he showed up many hours later, he confirmed our suspicions that the balloon which anchors the tube inside the stomach was not inflated with water as it should be, and there was no way to be sure of the j-tube’s current location any longer. They had clipped the tube in place with three metal clips, but it is unlikely that they are still in place because of how far the tube came out. This is a temptation for anxiety in wondering where they’re at now. My doctor is presently out of the country, and the attending fellow said they will be discussing things, and then my doctor will decide what to do this coming Monday.

In the meantime, they have started cycling my TPN tonight. I will be on it for at least 24 hours straight, and then they may move the infusion rate up and the hours down a bit based on how I’m responding. There have been a number of differing opinions and some confusion regarding putting me on tube feeds while I’m in the hospital at the same time as the TPN, so that has been a challenge for me to work through today, but for now, I first have to just get through fixing the tube once again.

So, it has been tough. I have been asking a lot of “why” questions. Why a hard procedure that got me nowhere? Why do I have to go through it all again on Monday or maybe even something worse? Why all these hard symptoms with the TPN, too, that returned tonight? And the list could go on and on. But I don’t have to have the answers. I belong to the One who knows them all. His ways are higher than mine. He’s up to good things that I just can’t fully see right now.

That is the truth, but I need your prayers. I need hope. I need light in this dark place. I was encouraged by that theme today. God kept bringing up darkness and light again and again. The words of Psalm 18:28 that a friend texted me this evening have brought me hope when mine was almost gone – “You, O Lord, keep my lamp burning; my God turns my darkness into light.”

I am waiting in hope for His light to come in greater fullness. I may only have a tiny match right now, but I can trust Him to keep it burning when I can’t.

Procedure Tomorrow

Hello friends,

God was so faithful today. Thank you for your prayers. My parents and I headed up to Hopkins at 7am and made it there in time for my fluoroscopy at 9am. The study didn't take very long, and it confirmed that the j-tube is in the wrong location - my stomach and not my jejeunum. :) This explains in part the increased amount of stomach pain and symptoms over the past few weeks. 

We met with my doctor, and he scheduled me for a 2pm procedure tomorrow to have the tube repositioned. He plans to fasten it in this time so that it doesn't pull back up at any point. He also agreed to start me back on TPN for the time being while I also continue to use the j-tube (for more details, see the post prior to this one). I got home just in time to hop back into another car and make it to the second half of my PT appointment in Frederick. Then I was able to spend some time doing errands with a few friends.

As I mentioned in my blog post yesterday, the path ahead isn't completely clear or encouraging, but I have so much to be thankful for - in particular, a gracious God who gave me the strength to get through today and provided clarity on the next steps to take. I have been greatly encouraged hearing about all those who continue to pray for me, especially at the times I am most discouraged or just don't want to keep fighting. He always knows what I need.

Thank you all for praying for my procedure tomorrow. I arrive at 12:30, and it should take place at 2pm. It should be fairly simple, but I never enjoy going under. I am sure that He will carry me through once again. Didn't get too much sleep last night, so hopefully, tonight will be a bit better.

I am going to need much perseverance and strength to return to TPN while also trying to work on the GAPS diet through my j-tube, but there is always hope in Jesus.

Love you all.
------------------------
"Be still and know that I am God." - Psalm 46:10

Hopkins Tomorrow Morning & TPN Again?

Hello friends,

Early tomorrow morning I'll be heading up to Baltimore for a "PEGogram" to determine the actual position of my peg-J tube. Ever since the tube was placed this past January, it has been a constant battle not only to find a formula I can tolerate but also to simply tolerate running anything through the tube. Whenever I do, I experience pain, shortness of breath, and a number of strange neurological symptoms. This is what happened last summer and was the reason I moved to TPN (arterial feeding through my veins) this past August. It seems that the peg-J tube was either not placed in the correct location or became dislodged, so this imaging test will give a more definitive picture of where the tube is presently positioned. After the 9am imaging, my parents and I will meet with my doctor at 11am to discuss the results and decide whether to schedule the procedure to reposition the tube. We will also discuss whether to return to TPN as the main source of my nutrition/caloric intake.

At the moment, I am continuing to stay on my feeding pump and do all I can to take in homemade formulas, but my weight has been gradually slipping.  I cannot tolerate an increased flow rate on my pump or running my feeds more than 14 hours at a time. Returning to TPN is one of the last things I want to do for a number of reasons:

• The high risk of a bacteremia infection (1 in 6) which is what put me in the hospital this past January and on the subsequent month-long course of IV antibiotics.
• Having to rely on "chemical nutrition" in my bloodstream and also lipids which are difficult for the liver to process.
• Having to take in corn dextrose again (my body is highly intolerant to this).
• Running it for 12 hours at night and disrupting sleep.
• How sick it makes me feel.

And I could go on, but there are also hopeful things with this approach. This time around, I would seek to use my GI tract while I am on TPN, and do my best to work with a nutritionist in Alabama who would be helping me implement elements of the GAPS diet which seeks to heal the lining of the gut. I would hope to do this through my feeding tube and possibly small amounts by mouth as well. We have also been told that the liver can function better on TPN if you are still using your gut in some way.

My doctor still has to approve these things tomorrow, but for now, this is where it looks like things may be heading. It does sound feasible and worth trying when you lay it out there, but I would not be honest if I didn't acknowledge that there is no guarantee that this path will be successful or most likely will not bring quick results. One other new development is that (through the incredible generosity and kindness of friends) I have also recently seen a new doctor who is running tests for adrenal/thyroid function, along with some of the Lyme coinfections such as Bartonella and other bacterial/fungal issues. He believes that addressing my adrenal/thyroid function could make a difference in my motility issues, and he is also concerned that I take in omega 3 for brain function. I still have a bunch of labwork to do for him and would be grateful for prayers that we would be able to get the necessary amount of blood drawn which has been quite difficult lately.

And so, I am grateful that there are still specific things to do and try in order to keep fighting for progress and some kind of breakthrough, but even so, there is not a clear path to success or healing laid out before me. I continue to desperately need the strength and wisdom of the Lord for each step.

Thank you all for each and every prayer. I could not do this without you. You are God's gifts to me in a very dark valley. It is amazing how He always has people pray at just the right times. Each moment is incredibly difficult right now, but the hardest times usually come as the day progresses (the longer my pump has been running) and into the evening. I will be having a blood draw done at 4pm today and then to recap, will be heading to Hopkins early tomorrow morning for the imaging study.

So grateful He is in control!

------------------------------------------------------------------------
Show me the right path, O Lord; point out the road for me to follow. Lead me by your truth and teach me, for You are the God who saves me. All day long I put my hope in You. Remember, O Lord, your compassion and unfailing love, which You have shown from long ages past. - Psalm 25:4-6

FB Update from February 25th

Hi friends,

God has been so kind. The waters are deep and the way ahead unclear, but I have been blessed by His continued sustaining help.

Today is a big day. Have had calls and emails in to my Hopkins doctor since last week to ask him to reposition my jpeg tube so we can discover whether proper positioning will make a difference in the severity of my symptoms and ability to tolerate the feeds or not. It is looking like I may need to return to TPN with the PICC line I still have in my left arm because I am just not able to take in enough calories through my feeding tube at this point. My mom has heroically been making experimental homemade formulas out of everything from kale to rutabagas, and I have continued to try prepared formulas, but it's incredibly difficult to endure the feeds. By the end of the day, it can be near unbearable, but there has been grace to keep fighting.

I don't know if my doctor will agree to TPN because it means returning to living with the risk of bacteremia/sepsis again and just isn't good for the body by any means. I honestly don't want to even think about starting it again, but the hope is that I would use that to gain weight while trying to take in smaller amounts of healing broths/nutrients through my tube with the goal of restoring healthy gut function (that is my non-Hopkins nutritionist's hope). I am also praying that if there are other tests that should be run, that I would be shown through another doctor, etc.

And so, we will see what this week brings. I wish I could make the tube work but it's just not improving. Thank you for each prayer. It has helped me endure this far. If I try to figure it out or think about what will work I am quickly on the edge of despair, for there is really no hope in the natural. But praise God that He is not limited by any of the "impossibilities" before me!

I thought the story would be different by now, but He's still on schedule. One day I will be free. I don't know if that will be tomorrow or 50 years from now, but that day WILL come.

So grateful for each of you.
------------------------------------
For God alone my soul waits in silence; from Him comes my salvation. He only is my rock and my salvation, my fortress; I shall not be greatly shaken. - Psalm 62:1-2

Recent Updates from FB

Saturday, February, 9, 2013
 
Hi everyone,

I'm sorry it's taken so long for me to update. It's just been so difficult to get through the moments these days. Thank you for your prayers for my appointment at Hopkins last Wednesday. God gave me the strength I needed to talk and go through that time.

My doctor believes that my x-ray from my last day in the hospital shows that my j-peg tube is not in the correct position but he is not concerned even though it is further up than the intended and ideal location. This is difficult for me because moving the tube further down could possibly decrease some of my symptoms and make it more functional or it might not make much of a difference. At the moment, I am not sure what to do, so I am praying about it and trying to move forward.

My antibiotics will finish later this coming week, and he said I could have my PICC line removed at that point.

The biggest challenge I am presently facing is finding a formula that my body can tolerate and fighting through how sick it is making me. Over the past few weeks I have been experimenting with homemade formulas with the help of a nutritionist outside of Hopkins. I am so grateful for her knowledge, ideas, and the ways she is trying to help me, but neither one of us know what will really work in a j-peg when it comes to the functional side of things. It has been so good to be off of the canned formulas that are full of all the things that I am either allergic or intolerant to and from which I haven't been able to absorb much nutrients. But the "experimental formulas" just aren't working for me either. They consist of lots of oil and sugar (in the form of either corn-free dextrose, agave, or honey) along with amino acids, gelatin, and various supplements. None of us are food scientists, and we haven't been able to find a way to get the oils emulsified well and are continually running into difficulty with the tube clogging either due to supplements clumping or a change in temperature from a cool room or just going to the car.

I've been so blessed to not experience much nausea over the past few years (amazing) but now it is almost a constant companion, and I am hitting a wall as to where to go next. None of the options look pleasant - trying a canned formula again that makes me sick, returning to TPN, or coming up with another type of homemade formula that won't clog the line and pray I can tolerate it...not sure where to go and am so weary of trying to figure it out.

I have other updates on new doctors and things that have happened over the past few weeks, but I will have to save them for another time.

I'm sure this was much more information than most of you were looking for, but I'm not too good at simplifying things. :) I would be most grateful if you could pray that God would lead us to a next step and make a way for something I could begin to tolerate. It is so difficult to press on right now.

So grateful for each of you! And I am so grateful that I have a God Who is much BIGGER than all of this! My faith is small, and my hope is flickering, but He can sustain it.

Thank you for praying.

Saturday, February 8, 2013
 
"I know that You can do all things, and that no purpose of Yours can be thwarted." - Job 42:2

And those who passed by derided Him, wagging their heads and saying, "You who would destroy the temple and rebuild it in three days, save yourself! If you are the Son of God, come down from the cross." So also the chief priests, with the scribes and elders, mocked Him, saying, "He saved others; he cannot save himself. He is the King of Israel; let him come down now from the cross, and we will believe in him. He trusts in God; let God deliver him now, if he desires him. For he said, "I am the Son of God." And the robbers who were crucified with Him also reviled Him in the same way. - Matthew 27:39-44

He had all power, yet He surrendered it. For us. He stayed upon that cross. He knew the glory that would come from the most horrific suffering ever known...welcoming us into His glory. He stayed. For me. For you.

I know He could rescue me tonight from this suffering. But He hasn't done so yet. I don't know why that is, but I do know that NO purpose of His "can be thwarted," and if He brought beauty and glory and life for millions out of the death of His own Son then I can trust Him to bring beauty out of my pain and questions and heartache.
 
Wednesday, February 7, 2013
 
Dear friends,
I'm on my way to a 1pm follow-up appointment with my Hopkins doctor right now. In need of much strength and grace for discussing where I'm at right now and if there's anything to be done about the current placement of my tube. Thanks so much and I'm sorry for the lack of updates. Been very sick lately but God is faithfully keeping me. Grateful for you all.

"The Lord is my strength and my song. He has become my salvation." - Exodus 15:2

Hopkins Update, Day 8

Hi everyone,

Thank you for all the prayers and for continuing to walk this road with me. Here's my attempt at an update on the past few days.

SUNDAY EVENING
Sunday night was great because the Raven's won, and I got to hang out with my new friend, Chamara! :) The night was especially challenging because I couldn't sleep and my tube feeds continued to run at the goal rate, but Monday morning was a new day, and the doctors gave me the news that I should be released at some point that day.

MONDAY
On Monday afternoon, a nurse from the home health program stopped by my room to teach me how to use the pump for my antibiotic infusions. It's a smallish bag that runs continuously and gives me my main doses every four hours. I will be on this for another three and half weeks or so. Chamara stopped by to say hello and help me pack up a bit. Then she surprised me by inviting me to go to Disney on Ice with her and her little boys. What a treat that will be! My mom came up with my brother, Robert, and we went through the discharge papers, got packed up and began saying goodbye to a bunch of the staff and new friends that I already miss.

During this time, I began noticing a growing difficulty breathing and much chest congestion and coughing. We decided to head out anyway, but by the time we were just outside the city I had to have my mom pull over and help me get more air. It seems that I was having an allergic reaction to either the dairy in the formula or something else (Children's Hospital confirmed dairy allergies last summer), so I decided I'd have to find another one. We considered going back to the hospital, but I really wanted to go home, so we headed back to 95, and God gave me grace to keep hanging on.

TUESDAY
It was such a blessing to sleep without interruptions, but when I got up the next morning (afternoon really) to contact my nutritionist and work on finding another formula I suddenly realized something was very wrong. I couldn't think straight, felt extremely weak, and collapsed onto the bed. I suspected my blood sugar had taken a huge dive after going from constant sugar infusions to zilch for 24 hours. I really didn't want to go back to the hospital, so I had my mom put diluted lemonade through my g-tube, and we began tube feeds with my old formula from last year. I started trying to track down a glucometer and a few hours later my friend brought over her sister's extra one (thank you, Liz!). My sugar was 67 so not too bad. I continued on the tube feeds and by the time bed came, I was at 80, so God definitely provided and carried me through that little crisis.

In the midst of all this, God sent even more encouragement. Two packages arrived in the mail - one was a beautiful, cozy blanket with blue and brown sparrows that my Wheaton friend, Charlotte, had made for me. The other was a book titled, "Braving the Storm," by Eric Gaudion, a pastor in the UK who has walked a very painful road and learned much about how to comfort others. The doorbell also rang, and there was a beautiful flower arrangement for my family from our sweet neighbors, Paul and Kaylan. So blessed. Then Paula came and braved the subzero temperatures and my two bags to help me move around a bit and pick up a few things from the library at Lakeforest Mall.

TODAY
At the moment, I am continuing on my old formula because I have to have some source of nutrition, but it is very difficult. I am experiencing a number of symptoms from before including brain fog, GI distress, weakness, additional pain, etc. but am grateful that I can breathe. :) My hope is to find a formula that I could make at home that would be better tolerated but it's complicated because the formula has to be a particular viscosity in order to be put through my tube. I have honestly been quite overwhelmed by it all today, and my heart has been heavy and weary and struggling. In the midst of it all, God has been very patient with me, and He continues to send hope and encouragement.

This post has turned into a book, so I'm going to wrap it up for now. Thank you all for every prayer. The best way to pray at the moment is that God would shine His light on ONE next step for me to take. There are so many good ideas out there, but I just don't know how to implement them.

Love you all.
------------------------------------------
I lift up my eyes to the hills.
From where does my help come?
My help comes from the Lord,
Who made heaven and earth. - Psalm 121:1-2

Hopkins, Day 7 Update

Dear friends,

I greatly missed being at church this morning and with so many of you, but God has blessed me greatly even inside this hospital.

Last night, I had the privilege of meeting, Jessica Rehn, a true hero and someone I so greatly respect for her endurance, joy, faith, and trust in the Lord through the dark valley of cancer. God miraculously healed her of stage four breast cancer this past year. She came to visit me last night even though it was quite late, and we had a wonderful time laughing and sharing stories of God's goodness in our lives. She is a fighter and I learned a lot from her faith.

After Jess left early this morning (it was after 1am!), I got to know one of my lovely nurses from Cameroon a bit better, and learned that she was a Christian. We got to talk about all our favorite songs.

I was able to get some sleep last night, and the tube feeds have continued. I was bumped up to 30 this morning and have been at my goal rate of 40 for about two hours now.

This morning, I enjoyed listening to the songs that I was missing at church back home and started watching a Piper sermon on joy amidst suffering. I was pretty desperate for a way to move around and even hoped for a chance to see the sunlight and get some fresh air for the first time in a week, but it didn't look like it was going to happen. I asked the Lord to send me someone, and soon after, my tech came by and offered to take me. My nurse kindly unhooked me from my IV and pump, and I got to take a walk and go outside a bit. It was so encouraging to talk with Listra. She loves God and told me to keep asking and believing and I will see God answer my cries. I was so blessed by my time with her. We even ran into my new friend who put in my PICC yesterday morning!

Hopkins has a huge statue of Jesus in the historic part of the hospital, so we took time to visit it and took a few pictures. It's beautiful, and underneath are the words from Matthew 11:28, "Come to Me, all you who labor and are heavy laden, and I will give you rest." When I got back to my room, I discovered that the same verse was on my desk calendar today. :)

At the moment, I'm getting ready to have a Raven's party in my room. One of the girls from housekeeping is going to join me, and I'm grateful for the company. Anyone else is welcome! :) I'm afraid the TV is only a 12-inch, though. We'll still have fun.

So, more to come later, but for now I would be so grateful for continued prayers that I could endure through these tube feeds and know how to continue fighting and moving forward while believing in hope that He will rescue me at the right time.

Love you all!
--------------------
But as for me, my prayer is to You, O Lord.
At an acceptable time, O God,
in the abundance of Your steadfast love answer me in Your saving faithfulness. - Psalm 69:13

Hopkins, Day Six Update

Dear friends,

There are many things for which to thank Him for today. I felt your prayers last night. It was difficult getting to sleep, but I noticed that the nurse and tech were more sensitive and did their best to stay out of my room as much as possible. I actually got little chunks of sleep during the second half of the night! :)

This morning, I got up to prepare myself for beginning the tube feeds, but the PICC team showed up and told me I had been bumped up in the queue, and they were ready to put in my line. This was a surprise but a good thing as well. After some back and forth regarding whether to get a single or double lumen, they got me under the sterile tent and began working. Last August, my line went in immediately, and things were very smooth, so I was hoping for a similar experience. Not to be...they had difficulty getting it to go in the first vein, so they moved to a second. That one failed as well. On the third try, it worked! I didn't enjoy getting stuck with Lidocaine three times, but there was grace, and they were so kind. The x-ray confirmed that placement was correct, and I now have a very sore left arm with a brand new PICC attached. My antibiotics, IV fluids, and electrolytes are now running through it.

The tube feeding was delayed due to the absence of an available pump and eventually began this afternoon. I started with a small amount of water for an hour or so and then moved to formula at a slower drip rate. The plan is to bump up my rate by 10 every six hours until I reach the goal rate of 40. During this time, they have to watch for refeeding syndrome (basically complications with electrolytes and other metabolic functions due to the reintroduction of food after a period of not eating). If I am functioning alright by the time I reach my goal rate then they will release me Monday. I will then have home care services which will help facilitate the antibiotics as well as tube feeds.

God's grace has truly been sufficient for each moment. Presently, I am especially in need of endurance and help for persevering with the formula and tube feeding. Even though the rate is quite slow right now, I am experiencing strong neurological and GI symptoms and find myself far weaker and unable to do as much as I could before this began running. (It is also a little unnerving to have four lines going into you at once.) :)

On the bright side, I was immensely blessed by a visit from dear Rhoda and Jane this afternoon. They brought me the cutest pair of socks (much nicer than the hospital ones), and we got to talk, read Scripture, and pray together. It was so sweet.

My parents came by for part of the afternoon, and my mom got me out of my room for a short bit. I didn't make it outside, but I caught a glimpse of the sun through the windows for the first time in a week. It was so beautiful.

A few other highlights...

This morning, one of the nurses who put in my PICC turned out to be a Christian, and we had a wonderful conversation. I was so encouraged to hear how God had worked in her family and transformed her marriage and so much else by His power and love. It was a beautiful story. She brought light into my day.

I had another sweet conversation with my tech this afternoon, and she reminded me that EVERYTHING happens for a reason and to never stop praying. It's always amazing to me how God sends people to remind me that He's still here just when I most need it.

This has been a long post, and I'm sorry for if it's there are too many details. You can always skip over whatever's too much. :)

It's not easy. I want it to end. I don't know what tonight holds. Or tomorrow. But I know Who walks with me, and that is enough. Thank you all for each and every prayer. He hears. And just think...so many of the things that happened this very day were the direct result of your prayers! All these blessings and strength in the difficult moments. Thank you.

----------------------------------
Let him who walks in darkness
and has no light
trust in the name of the Lord
and rely on his God. - Isaiah 50:10