Transitioning to New Update Platform

Hi friends, 

I have decided to start using PostHope.org for medical updates and am retiring this blog. I also plan to try to keep major medical updates off of Facebook, other than possibly posting a link whenever I update my PostHope site, from time to time. So if you are interested in receiving regular medical updates, you can subscribe at PostHope. A new update is waiting for those who have been asking! So grateful for each one of you.

Scary Day. Faithful God.

Since I have fallen majorly behind again on blog updates, I am posting the most relevant Facebook updates from the past few weeks below. The first one is from today. 

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

Hi friends,

I don't have the ability to write too much at the moment, but I just wanted to thank you so much for your prayers today. I went ahead with the CT scan and didn't hear back yet on the results which most likely means that the scan didn't show anything remarkable. That's encouraging but also discouraging because I don't know what is going on, and the symptoms are scary. Last night, I had an episode very similar to one I had about six weeks ago...an intense, sudden throbbing/pulsing in my head, radiating throughout the entire head and leading to sudden weakness, dizziness, and a host of symptoms. This morning my vision was blurring, and my dizziness and "spacey" head feeling has worsened. The last time this happened it took about 4-5 weeks before the dizziness abated. I'm not sure what is going on, and I'm finding it incredibly difficult to even do the very basic things.

At the same time, my organ and GI pain/symptoms is at one of the highest levels, and I'm having difficulty getting in enough fluids. I'll have to leave off here for now, but I knew some of you were concerned, so I didn't want to leave you hanging. Thank you for carrying me through your prayers!

God has a way. It's just never the way I expect. So grateful today that He holds on when I cannot hold onto Him another second. He doesn't let go.

Did anyone see that green world out there after the rain this evening? It was so ALIVE-looking. Everything looked brand new and awake and growing. It was beautiful. I can't imagine how beautiful the New Heavens and New Earth will be one Day! 

Earlier Today

Hi friends, trying to make a wise decision right this moment regarding whether or not to have a CT scan of the head this afternoon. Just need extra prayer because I'm really torn both ways...thanks!

April 24, 2014

Dear friends, thank you for your prayers regarding my hands and the "locking up" spasms I was having this past Monday. My PT was able to treat them on Tuesday, and the difference afterward was remarkable. They were tingling and not working well, and immediately after treatment the tingling disappeared, and I regained better use.

Last Sunday, I played trackball with my little nephew which requires a repetitive strong flick of the wrist. My PT said I pretty much went from 0-100 in one thirty-minute session, so that is one reason why I was having so much trouble. A healthy person could use their entire body to launch the ball into the air, but I could only use my arm, so I put my whole arm into it and nothing else. It was fun, but I guess I went a little too fast. 

He suggested that I limit my typing and phone use for the next week and see if things improve. I'm still having some difficulty and tingling, but it tends to worsen with use and also with breathing and digestion issues. So, thank you for praying. I know God is answering. I am going to try to limit the use of my typing as he suggested, but I hope I can share more next week.

Grateful!

April 21, 2014

Hi friends, my hands have been "locking up" a lot today to the point where I have barely been able to use them. Using my phone or typing on the computer have been the hardest, so this update comes at a rare moment when I can get away with it for a second. I'm not sure all the reasons why, but it's very unpleasant and makes me realize that the use of my hands is yet another thing I've taken for granted!

I am hoping my PT may be able to help tomorrow, but I honestly feel a little silly posting this and almost didn't do it. What pushed me forward was realizing that letting you all know about this just provides us with another chance to give God glory when we see how He answers our prayers. Also, if you text me and don't hear back that may be why. Grateful for each of you!

April 20, 2014

So, Thursday was a tough one, but it was just amazing to watch how God met me in the midst of it. After a scary episode with a severely swollen tongue and mouth I ended up at my doctor who was concerned I had an abscess and wanted me to see a dentist immediately. Sitting in his office, I called my dentist who was heading out the door until Tuesday. He suggested I call an oral surgeon to see if he could help. I called and got the same story: "He's heading out but can see you Tuesday." After hearing my situation, the surgeon there recommended I go straight to the ER and have the oral surgeon help me. My doctor agreed, and was ready to give me an injection of Cipro right then and there because he was concerned that the infection was already going systemic.

I decided to call my childhood dentist (who my family still sees) as a last resort, and he said he would wait for me if I could come straight there. So I told my doctor I would wait on the injection and try to make it to the dentist. Once I got there, he got me in the chair and started poking around inside my mouth. Then he told me that it wasn't an abscess and taking antibiotics would have likely made things much worse because it was a fungal infection.

I was just so grateful and happy that I didn't have to go to the ER, have surgery yet, or take antibiotic injections. He put me on an anti-fungal medicine, and I'm no longer able to chew gum and have to be much stricter in keeping out sugar (which I was already supposed to do).

A lot more happened, but I just wanted to give you the basics so you could see how God used your prayers to make a way through the confusion and protect me from going down the wrong path. Thank you!

April 18, 2014

Thank you all so much for your prayers! God answered! It was a long day, but the short answer is that I have serious fungal infection but no abscess which was how it initially presented. So I didn't have to go to the hospital, just the doctor and the dentist, and now I'm home with medication. I am very grateful. Feeling sick and in pain but so happy to not be worse off. I will share more tomorrow because the story is worth sharing. Thanks again!

April 17, 2014

Hi friends, this is going to be quick, but I'm headed to the doctor with some type of severe swelling in my mouth that seemed to be an allergic reaction, but there is also an abscess-like area that is very concerning. My tongue was over three times its normal size this morning, and I could barely talk but some of that has gone down. I'm having to hold back on things I normally take in and am hoping that the doctor will have some answers when I see him today. This wasn't how I planned this day to go, but God is in control. I have been struggling with some anxiety and my normal symptoms are elevated today, too. Just wanted to let you know because I am asking God to increase my faith for what He can do, and I know that your prayers make a huge difference!

Thank you so much.

A Bunch of Updates

Hi friends,

Well, I just typed an update and lost it when the computer overheated. (My poor brother’s laptop has some issues, but he is so generous to lend it to me when I have a need.)

I know it’s been a while, so I thought I would just try to give summaries of the main health areas I’m currently focusing on:

Blood Clots – Praise report! I had another ultrasound of my left arm recently, and it appears that the clots have resolved. This was a surprise and huge answer to prayer! My hematologist doesn't want to take me off the blood thinner until he has determined that I’m not still at risk of further clots. I’m hopeful that this will be soon, as this is not a medication you want to be on any longer than necessary, and I’m nearing the 10 month mark.

Anemia – After three iron infusions, I began experiencing a level of dizziness and unsteadiness that was very difficult to live with, so I put the infusions on hold for a while. I will recheck my iron levels tomorrow and then we will decide how many more infusions I will need. I am hopeful it may be less than originally thought and that the symptoms will not return, but it is hard to predict at the moment.

Hydration – I have been ranging between 18-25 ounces of fluid each day, averaging about 20oz. This has been a difficult area to see progress, but I am so grateful to be line-free and to have avoided the ER since February.

Food – I will be meeting with my nutritionist next week to deal with a long list of things. Since I began seeing her last August, I have been able to implement about half of what she asked of me. A few of the things I have not yet had success with are tolerating meat and removing all sugar. I tried a small piece of white fish last week, and it didn't go so well. On the bright side, I have been daily taking in a flaxmilk/rice protein powder/walnut butter shake, boiled or steamed kale, hard-boiled farm eggs, and rice tortillas. I recently added gluten-free oatmeal. Sometimes I add in some nuts, and I've tried a few other things from time to time. After two years of no food or drink by mouth and five previous years of a very restricted diet, this is simply wonderful and amazing. I don’t ever want to take food for granted again. I’m so grateful I can swallow and taste food again. It still hurts and doesn't do what it’s supposed to do, but it’s still food. And I no longer have to worry about gaining weight as I've got it all back and more. (Strengthening is the main need now rather than weight.)

GI & Pain – I continue to deal with daily core pain and a host of symptoms of which I will spare you the details. It worsens with food but there really isn't any part of the day when I am not dealing with it - just better moments and worse moments. This is the main reason why I still use the crutch. I am still weak and unsteady, but the pain is the main reason I use it. I’m not sure how or when this issue will resolve. If you would like to pray for this area specifically, that would mean a lot. I feel like I could make a lot of progress if this area were to improve as it affects so many other things.

Another praise report – I made it through three days in a row without using my crutch before I had to revert back to it. I would love to increase this as I can, but it’s a hard one. I know it’s not an obstacle for God.

Last night, I was so determined to save the flowers in the backyard from the impending hard freeze that I managed to cover a third of them with buckets and boxes and staked-down-tarps by myself in the sleet, rain, and dark, all without my crutch. It was hard, but I just “had to do it.” Just over a year ago, I wasn't even able to sit up in bed or move across the room without help. I’m so grateful. This morning, the flowers were still alive (though somewhat flattened).

I cannot thank you all enough for all your prayers and the way you continue to cheer me on in this race. I would never have made it this far without it.

This week, as I think of all that Christ suffered for us on the cross, I am so grateful that He didn't stay there but was raised to life again for you and for me. I am alive today because of Him. And my hope for each day of the future is His resurrection power bringing life to what is broken.

May our faith increase as we think on what He is able to do in the days ahead.

Facebook Updates

Hi everyone,

Here are updates from Facebook from the last week. I'm still trying to get something together regarding the PICC removal. (If you read these, start from the bottom and work your way up.)

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

February 8, 2014

Made it home again. Thanking God for Katia and her sacrifice to not only go to the store for me but then take me to an urgent care. Wait. Take me to hospital. Wait. And wait some more. And some more. And some more...until she dropped me off at home after midnight. What a blessing! Also, grateful they got an IV in. I'll try to sort everything else out tomorrow. God knows what He's up to...feels like setbacks but He enables comebacks.

February 6, 2014
For those who really want to know, today's total was 23 ounces. Been hard to push higher, but "God will make a way where there seems to be no way!" 

"For there is no one like our God// There's no one like our God// There's nothing that can stand against You// There's no stronghold You can't break// No life that You can't save// Our God you NEVER fail..."

February 5, 2014
Total Fluids (Day Five) = 20 ounces

Today it was harder to see progress, but it's on these kinds of days when I have greater opportunity to "walk by faith and not by sight." Thank you all for praying and for helping me expect more. 

In light of all the challenges today, I especially want to take a moment to praise God for the following...ability to use my hands at all (some people can't like my little brother). a beautiful Canadian geese formation above me just as the moon started peaking out at dusk. the ability to make it to the doctor AND the ultrasound, too. that I took in 20 ounces instead of nine or anything less. stories of God at work in so many lives. the book of Acts. the beauty of the ice-covered trees. that greater things are yet to come.

February 5, 2014
Extra hard day...had an appointment with the hematologist and the nurse there was able to draw my labs the normal way (this is when you miss your PICC but probably one of the only times!) and ordered an ultrasound to check on the status of the clots. I overheard the technician giving the report, and it sounds like they're still there, but I know God is able to deal with these, too! Considering having iron injections next week and will hear at that point regarding my blood thinner.

The liquids are quite a battle today (and so is everything else)...feeling sicker and in more pain than usual, but I'm fighting to tell myself that this isn't how it will always be and NOTHING is impossible for our God.

Hoping to make it to prayer at church tonight, but I just want to say a big "thank you" to Ashley for not only taking me to my appointment in Bethesda but then tacking on the unexpected LONG wait for me while I had my ultrasound done across the street and then swinging me by the store to get water. So grateful.

One day, I'll get that post done about the hospital last week. It was really encouraging, so I want to make sure to share!

February 4, 2014
Total Fluids (Day Four) = 23 ounces

I had a more difficult time getting in the volume of fluids I hoped today. But maybe part of that was because I actually put six more ounces in just after midnight last night, so I'm not sure if that goes with yesterday's total or today's. 

Anyway, despite the slower progress today I want to thank God for...a good PT appointment. running into a friend unexpectedly. walking with Jenna. Psalm 23. having my sister hangout at our place. first time showering without the process of wrapping my arm in a plastic bag in almost three years. a kind word from an employee at the grocery store. the prayers of friends.

February 3, 2014
Total Fluids (Day Three) = 23.5 ounces

It truly is amazing to type these numbers out, and I continue to do so for several reasons.

1) It shows that "nothing is impossible with God!"
2) It encourages us to keep praying because our prayers are heard and answered!
3) It helps me to see some kind of progress when it's difficult to measure that by how I feel from moment to moment. 
4) It's just great to have something encouraging to share for once!

Thank you so much for praying! It's NOT easy. My stomach hurts a lot. I'm thirsty but can't handle the volume my mind wants to drink at once. I'm dizzy, weak, and things just don't work right. But I want to keep pressing on because that is where LIFE is found and God is able to do FAR beyond all we could ask or imagine.

I do still want to share how things went last Friday at the hospital and what comes next. Hope to get that post together soon.

Thank you all for rejoicing with me and helping me. I honestly was quite discouraged on Saturday and have continued to be tempted towards that, as I didn't believe this was much progress, but your encouragement has helped me to realize this IS something to be thankful for and reason to keep asking for more. Each day is a fight. But "I can do all things through Christ Who strengthens me" (Philippians 4:13).

February 2, 2014
Total fluids (second day) = 19.5 oz! ...and this despite many obstacles.
#thankgod #presson

February 1, 2014
Total fluids (first day) = 15 ounces 
One ounce higher than my record before the PICC came out.

Do.Not.Lose.Heart

February 1, 2014
Still can't seem to tolerate the computer screen without my head going wacky. Dizzy, headache, weak, lightheaded, etc. I had really hoped to be able to share more. In His time. Thank you, friends. Tempted towards much discouragement but I know He is able to overcome all of this...faithful always.

January 31, 2014

Sorry, friends, I wanted to update and share praises but having my first real migraine aura, and I can't look at this screen. My heart goes out to you who have these all the time! Good night!

January 31, 2014

Line is out. God is faithful. Now to climb this mountain and pray for Him to level it or take me over the top. #thankyouforpraying

The Line is Coming Out Today!

I'm scheduled for a 1pm procedure today to remove the PICC under fluoroscopy. Grateful for prayers for no complications and peace as they remove the line - eyes on Jesus and not the blood clots or anything else! And then for power to drink more than 9 ounces a day from here on out so that I can move forward without dependency on IV fluids. 

Thank you all so much! 

Jesus looked at them and said, "With man this is impossible, but with God ALL things are possible." - Matthew 19:26

Facebook Updates

Hi friends,

Once again, I haven't been able to keep up with blog updates. I'm pasting updates from Facebook below and then will follow with a short post.
--------------------------------------------------------------------
January 23, 2014

Hi friends,

Thank you so much for praying for me yesterday. It was a rough day, and I am grateful for how God enabled me to press through. My doctor was quite disturbed that my PICC had been in all this time. Apparently, there was some miscommunication between his office and the hematologists and interventional radiologists involved in my case. Some had said it was okay to leave the line in as long as I was using it and others had recommended it come out. Either way, he made it clear that it should not stay in any longer and is having it scheduled for removal as soon as possible.

He did not believe I should have another line or port placed which leaves me relying fully on the ability to drink. So I am looking at the reality of needing to go from 9oz/day to 32oz/day, knowing that if I can't make it for a few days it won't be the end of me, but it wouldn't be pleasant to add dehydration to the picture.

So here are the big prayer requests:

- Peace and safety during the removal of the line. It should be simple removal (my first one was), but this one has just been in a very.long.time. There is good deal of inflammation in the veins, and the line is wrapped up in multiple clots, so there's that added component of risk. (I'll tell you again when I'm actually scheduled.)

- Faith to keep pressing ahead with taking in more fluids and wisdom to know how to approach it in the most successful way.

- That God would make a way for me to drink sufficient fluids once the line is removed. Nothing is impossible for Him!

- Healing and relief from the unexplained right-sided pain that necessitates much of my crutch dependency. I know God can remove it if that is what's best!

- Sleep and rest for my mind and heart. Symptoms have grown more difficult over the past few days, and I am having difficulty breathing well.

Thank you so very much!
---------------------------------------------
"I know how to live on almost nothing or with everything. I have learned the secret of living in every situation, whether it is with a full stomach or empty, with plenty or little. For I can do everything THROUGH CHRIST, Who gives me strength." - Philippians 4:12-13

“The Lord is my portion,” says my soul, “therefore I will hope IN HIM.” The Lord is GOOD to those who wait for Him, to the soul who seeks Him. It is good that one should wait quietly for the salvation OF THE LORD." - Lamentations 3:21-26

January 21, 2014

Hi friends,
I know it's been a while since I've updated. I tried to "forget" about things as much as possible over the holidays and really put things off. Well, now things cannot wait any longer. This week is packed with appointments from Rockville to Frederick to Lutherville and places in-between. I missed one today because of the snow, but I'm grateful for a chance to stay home before the next two days.

Tomorrow, I will see my Hopkins GI doctor for the first time since May. He'll likely be encouraged at my progress, but there is not a clear answer for how to "fix" my hydration issue. My PICC line must come out. It had its one-year anniversary a few days ago, and some doctors say it shouldn't have stayed in past July. The line is wrapped up in multiple clots, and the veins are quite inflamed and tired of hosting an intruder for so long. There is still concern and hesitation that placing a port may not be the best course of action right now, and I feel the same way. I have been pushing myself each day to drink an ounce an hour and setting my phone alarm to remind me (let me just say that an hour sure goes by fast!). Some days I've hit 14 oz (including the flaxmilk used in hot cereal or a morning shake), but the average is around 9 oz a day (not even half-way yet). So, I'm facing the reality of not being ready for this line to come out in the hydration-realm but way overdue for it to come out in every other way.

I also met with my nutritionist yesterday for the first time since September, and she is not sure of a solution for the hydration either but encouraged me to do my best to keep up with drinking the ounce every hour.

I've been struggling with breathing difficulty, chest tightness, more pain, etc. over the past few days, and these are possibly additional reasons for the line to come out.

My labs also show that things are not improving too quickly, and I need additional iron infusions, among other things. Despite all of this, and the uncertainty ahead, there is so much to be grateful for...taking a walk by myself "for the first time in forever," continuing to press forward with swallowing, eating an egg and steamed kale every day, and the list goes on....

As I face tomorrow and the rest of the week, I would be so grateful for prayers for strength, wisdom, and faith to follow wherever He leads. God is able to make my body work again. Asking Him to increase my faith and display His power and goodness in new ways.
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

January 1, 2014

"God's delays don't make things worse. They always make things better." - Tim Keller 

Looking back on the year past, I am amazed I'm still here. God has preserved and kept my life. The path has been harder than I ever dreamed, yet He has never failed me. The mountains ahead are far too daunting for me to climb alone, but I know Who goes before me and who has promised to strengthen my weary frame. I want to praise Him tonight for His goodness and mercy, especially shown when I least deserved it.

Praise our God, all peoples,
let the sound of his praise be heard;
He has preserved our lives
and kept our feet from slipping.
For You, God, tested us;
You refined us like silver.
You brought us into prison
and laid burdens on our backs.
You let people ride over our heads;
we went through fire and water,
but You brought us to a place of abundance. - Psalm 66:8-12

I may not be in "a place of abundance" yet, but that Day will come, and while I'm waiting I can praise Him!

And I want to thank each of you dear friends. Where would I be without each of you? Your friendships are precious gifts to me! He has been so good.

December 21, 2013

Dear friends, thank you so much for your prayers yesterday. It's hard to describe what happened, but basically, I was standing in front of the computer trying to print something when I suddenly experienced a "lurch" feeling in my head and grew instantly weak, heavy, dizzy, hot, and had a difficult time getting words together and out of my mouth. My primary care asked me to go to the ER after I called his office to explain. I thought my blood might have been too thin, as I had just upped my dosage of blood thinner over the past few days, but it turns out I was okay in that area. Labs only confirmed that I am still seriously anemic. I'm not sure what caused the sudden shift yesterday, but I am grateful I was able to come home after five+ hours in the ER yesterday.

I am still struggling with similar symptoms and feel very weak and unwell, but I honestly feel this way quite often. It was just the sudden onset and dramatic difference that had us extra concerned. Anyway, I'm running out of words right now (or the strength to get them out), so I just want to say thank you again for all your prayers, and I hope to make it through Christmas before dealing with all the decisions that are awaiting me.

Love you all!

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!