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.)

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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.
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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!
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"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!

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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.
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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....