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. 

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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.)

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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.