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 

How Long, O Lord...?

...Will You forget me forever?
How long will You hide your face from me?
How long must I wrestle with my thoughts
and every day have sorrow in my heart?
How long will my enemy triumph over me?

Look on me and answer, O Lord my God.
Give light to my eyes, or I will sleep in death;
my enemy will say, “I have overcome him,”
and my foes will rejoice when I fall.

But I trust in Your unfailing love;
my heart rejoices in Your salvation.
I will sing to the Lord,
for He has been GOOD to me. - Psalm 13

Sometimes we feel forgotten. Sometimes it seems like the sorrow will never end. That it has taken up a permanent lodging place inside with no intention of leaving. Sometimes it seems that the enemy will never be vanquished. That the tormenting thoughts that all is lost, hopeless, or doomed to only worsen will erode us to the point where we feel powerless to wrestle with them one moment longer.

What do we do when it is so dark we cannot see? What if the darkness is so great that our enemies rejoice in our downfall and we never see the light again? What do we do when all inside and around us screams out:

Give up!
Stop believing!
It's hopeless...

We sing.
We sing of the Lord's "unfailing love."
We sing of His endless goodness.

Once again, it's Thanksgiving, and Christmas is waiting around the bend. I never thought that a year later I would find myself still unable to share in the meal, drink a cup of tea, or decorate the house. But this is where I find myself again. I could curl up and dwell on how much I'm missing out, or I could sing. I could recount His goodness. His mercies. His endless, unfailing, unrelenting, steadfast love.

Love. Unshakeable and immoveable. That is what has marked this past year. Yes, pain. Yes, suffering. Yes, questions. But also a love which has pursued me through it all. Which has never stopped providing just what I need. Which has proven to be unchanging even when I forget it's there. Even when I fail to acknowledge its existence. I truly have more than "10,000 Reasons" to praise Him. 

And so this Thanksgiving, I am looking back on a year filled with the unfailing love of the Lord, and because this love has never left me yet, I can trust it will not leave me tomorrow, or the day after, or the day after that. It was a love that cost the very life of God's only Son. Do I think He could ever forget the ones He purchased at such a high cost? How quickly I forget but He does not.

And so I am asking Him to help me sing these words today and each day to come:

The sun comes up, it's a new day dawning
It's time to sing Your song again
Whatever may pass, and whatever lies before me
Let me be singing when the evening comes

Bless the Lord, O my soul
O my soul
Worship His holy name
Sing like never before
O my soul
I'll worship Your holy name

You're rich in love, and You're slow to anger
Your name is great, and Your heart is kind
For all Your goodness I will keep on singing
Ten thousand reasons for my heart to find....

Sing to Him, sing praises to Him; Speak of all His wonders.
- 1 Chronicles 16:9

November Update

Hi friends,

I am sorry that I have allowed these updates to fade away lately. I just have not had the physical ability to write much and have been relying on Facebook for sharing updates, since it is easier, but I know not all of you are on there, so I wanted to try to put something up here so you wouldn't be out of the loop for so long. Thank you for your patience.

A lot has happened since I last updated. I have seen my new doctor in Virginia a few times as well as her nutritionist, but my body has just been too sick to implement all the things she has suggested, which include a number of supplements to deal with pathogenic bacteria in my gut as well as healing inflammation and restoring a good balance of healthy flora.

She also thought I could have a rare mitochondrial disease that matched all my symptoms, so she sent me to a neurologist at Children's Hospital who specializes in this disease. The tests recently came back normal. I am grateful for that, but they would like to look into some other mitochondrial diseases at my follow-up appointment in January.

The past few months have been filled with learning more of the meaning of endurance, and I my sole source of nutrition has been through my TPN (intravenous nutrition) which runs for 12 hours each night. I am grateful that God is using this to keep me alive right now, yet many of my symptoms and pain have only increased with it. My weight is holding and making small, gradual gains, but I am feeling worse in so many ways.

My Hopkins doctor does not have any answers for me, and as I have prayed about what to do, God has brought several other practitioners across my path. One in particular has been able to help people who have tried everything else with no success, but she is incredibly busy (working 120+ hours a week), and we have not yet been able to connect. In the meantime, I continue to believe that implementing the GAPS Diet would be beneficial to me, although it is unlikely to solve all my issues. Unfortunately, it's hard to tell if my body is ready for it yet, as I have not been able to tolerate broths or anything for the past month or more. Despit this, a kind friend spent a great deal of time researching various certified GAPS practitioners around the country/world, and she compiled all that information together for me. I had a wonderfully encouraging conversation with one of them earlier this week, and she has offered to help me at no charge by phone & email. I am so grateful for this provision and for her care for someone she does not even know. I am trying some of the steps she has suggested and hope to be able to make some progress with her. At the same time, I am still praying that I would be able to get in touch with the other practitioner to see if she will be able to help prepare my body to be successful with something like GAPS, but if that door doesn't open, then God will provide another way.

When I was in the hospital this past August, I had my G-J tube removed and replaced with a simple G-button tube which could be used for crushing supplements and flushing them into my stomach, etc. The tube developed some type of bacterial/fungal overgrowth a month or so ago, so I went to Hopkins at 6:15 this morning to have that replaced. It was challenging but went fairly smoothly, and I am grateful to be back.

(Interjection - I know this is a very disjointed post, and I apologize for that. So much has happened since May when I last wrote a real update that I'm finding it difficult to know what to say and how to say it.)

The bottom line is that I'm basically at a place where I am dependent on TPN to stay alive since my J-tube feedings grew too difficult for me to tolerate, but I am finding the majority of my symptoms continue to remain or worsen with each passing day. My TPN is high in dextrose (corn sugar) which was found to be one of the foods to which I am most intolerant/sensitive, but they are not able to adjust this unless I am able to start getting in extra calories by mouth. I had thought to be on TPN for two weeks at most and hoped to begin tolerating broths/foods with the help of my new doctor, but that hasn't materialized, so I find myself in a place of continued waiting on the Lord's deliverance while also fighting each day to do what I can to make progress in any way possible.

I have been amazed to see His sustaining power, day after day, especially in the moments when I didn't see how another step would be possible. He is so very good. He provides again and again.

I continue to greatly need your prayers for endurance, hope, healing, and practical wisdom for the path ahead. Thank you for how you help lift the weight and carry it with me. I know that one day all this will be a distant memory or not even remembered when compared to the glory that will be revealed (Romans 8:18). He will help me hold on until that Day.
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"Now I know that the Lord saves His anointed; He answers him from His holy heaven with the saving power of His right hand. Some trust in chariots and some in horses, but we trust in the name of the Lord our God." - Psalm 20:6-7