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