More Tests Tomorrow

Hi everyone, today was scheduled full, but I was just too worn out to make it so I had to cancel my appointments. Some of these things can just be done back home. Tomorrow, I have a 10am follow-up with my neurologist, followed by another GI procedure from 12:30-2:30. Can't wait to be done.

Yesterday I had my first iron infusion, and the side effects have been difficult. I will have 3-4 more of these over the next several weeks even once I'm home again. It may take a while before I feel the benefits but they will eventually come.

So grateful for each prayer. My picc line is no longer clogged. Thank God for answering that prayer.

Needing endurance for these final days. Geri flew home this morning, and another wonderful friend has taken over assisting me. God never stops providing. He is an unfailing Anchor in the stormiest of seas.

Still in Arizona

(Update copied from Facebook-sorry it's so brief and there are gaps.)

Hi friends, I cannot thank you enough for your prayers. God has answered more of them! A friend in the area who happens to be a nurse has some time off work beginning Thursday, so she has offered to come stay with me after Geri leaves this coming Thursday morning. I had an appointment with nutrition today and just received a phone call about a potential cancellation opening for tomorrow with allergy/immunology (the first available had been June 5th). Friday I have another unpleasant GI procedure/test, and I am still awaiting results from blood cultures. It's looking like I will stay through the weekend, but I have not yet booked my flight home.

Every day there are new mercies for the things I think "impossible," and God's faithfulness is amazing to watch. I also would not be honest if I failed to acknowledge how incredibly difficult it is to fight onward each day. Today was especially hard but His grace truly IS sufficient - again and again and again. It never runs out. Soooo grateful for each of you and your prayers. There are no conclusive new findings yet but God knows what He's doing. I sure don't. :) So glad He's in control!

Many Helping Hands

I just have to take a moment to list some of the ways I have experienced God’s mercy and provision through the care of others over the past few days.

• Geri’s husband, Mike, drove us to the airport after just finishing a two-day drive a few days before to bring his daughter home from college.
•  Hannah, Geri’s daughter and my friend, coming along for the ride to the airport and helping us with all the luggage.
• Mom packing until after 2am yesterday morning and then getting up early to do more.
•  Mom training Geri how to do my TPN.
• Geri investing all the time to learn. 
• My friend, Sarah, taking the time to help me go through clothes, taking me to CVS to get a new cane when mine started causing a blister, and then coming by before I left to fix my crutch with a new tip and grip support for the handle.
• Geri altering clothes so I’d have some things to wear in AZ.
• My sister, Tiffany, coming by last night to help me with my hair and say goodbye.
• My dad driving around to find me a new phone when my old one hit the wall yesterday.
• My friend, Rhoda, creating a prayer sign-up for me. My brother, Michael, helping me up and down the stairs.
•  My friend, Kathy, stopping by to say goodbye even though she has her own health struggles.

And at the airport yesterday...

• Geri was struggling with pushing our carry-on’s and handling my crutch and pillow while also supporting me.  After realizing that it probably would have been better to keep a luggage cart we suddenly came upon one that someone had left behind. God is so kind.
• When pre-boarding, one of the pilots offered to help us by taking all the carry-on’s we were struggling with himself so Geri could focus on just supporting me.
• Though the flight was supposed to be completely full, God gave us an open center seat so I could shift positions more easily.
• God gave me a VERY kind flight attendant.  Once she heard that I have trouble breathing while sitting and would need to stand as much as possible, she said that if the air pressure made me too uncomfortable, just to let her know and she would ask the captain if he could fly at a lower altitude. J  I never knew that was something they would consider doing. She also allowed me to keep my crutch for support right up until take-off. Then she stored it for me and offered to get it down whenever I needed it.
• The flight was long but uneventful, and God truly gave me grace to get through. When we landed, several of the flight crew told me they would be praying for me, and a kind member of the airport staff wheeled me to the baggage claim and then helped us get the luggage into the car.
• And the list goes on.... :) Thank you for praying! These are a direct result of your prayers.

Heading to Scottsdale

As I write these words, I am presently flying somewhere over the Midwest on my way to Scottsdale, Arizona. I did not anticipate this trip to the Mayo Clinic, but God surely did. And He has gone before me and ordered each step. For years, my grandfather has encouraged me to go to Mayo in Rochester, Minnesota, but I just didn’t feel it was the right time to travel somewhere else while I continued working with Hopkins. It has been almost two years since I had to move to feeding tubes and TPN and almost 12 years since my health struggles first began. A few months ago, I began considering whether it was time for me to look for additional medical help at Mayo or elsewhere and thought the Jacksonville, Florida Mayo Clinic might be the easiest of the three, but I wasn’t sure if it was the best medical fit for my situation or not. And now, through an amazing chain of events, I find myself headed to Scottsdale.

How did this happen? A doctor friend spoke very highly of the GI motility doctors at Mayo in Scottsdale and kindly talked with them about my condition. This past March I was able to get appointments with these doctors for this very week in May (it usually takes longer!). A kind friend from church offered to pay for my flight. Another friend began contacting friends in Arizona regarding help with housing and transportation. I was offered a place to stay with a wonderful family only ten minutes from the clinic! (They actually were active members of my church for over 20 years and had moved from Maryland to Arizona about six years ago, but I hadn’t kept in touch with them.) When I connected with them, I heard that they had recently been considering asking me if I wanted to come out to Mayo and stay with them but had thought to wait, knowing how many suggestions come my way. Then they heard I was actually looking to come! So God had already been making a way for me before I even knew it.

The final big piece was who could travel with me, prepare my TPN each night, and help me with daily needs. My parents both wanted to go, but the multiple needs at home between my handicapped brother, their own health, and more were just so great that it wasn’t going to work. We knew that if God wanted me to go, He was going to provide someone. A few days after it was determined my mom couldn’t go with me, another mom, Geri Carroll, offered to be my traveling companion. I was amazed once again at God’s specific care and provision for my needs. And it didn’t stop there! My church covered the cost of her flight, the Nam family offered us rides and the use of a car, and my dad helped me pull together all the medical records I needed to take.

I don’t know what God has in store for this week, and I wouldn’t be honest if I didn’t acknowledge that I’m afraid at times. Sitting for five hours on the plane is almost impossible with my pain, and I’m not excited about doing a ton of difficult tests or sharing my story again and again with new doctors. But God has said “this is the way, walk in it,” and so by His grace, I am seeking to do that. I am overwhelmed at the way each of you has sought to carry me in prayer and continue to help me fight and not give up. This road has been long and hard and oh so wearying, but we have a God Who never fails us. And He is greater than all. I am excited to see what He has in store this week. 

Brief Update

Hello friends,

I had hoped to put together a more detailed update, but my strength is already gone. Tomorrow morning I have a 12:15 follow-up appointment with a doctor I saw a few months back to look more closely at the possibility that I'm still dealing with one or more of the coinfections that come with Lyme Disease, along with other things that could be the underlying cause of my gastroparesis and GI/neurological issues. I have a lot of questions for him, and I will need much strength to communicate.

I recently saw a new motility specialist at Hopkins and am considering having a few more tests done, but he was not able to provide me with anything too encouraging at the moment. 

As some of you know, I have been seriously praying about going to the Mayo Clinic to get a fresh look at everything. They are the best in the country for GI issues. Well, God has recently opened up a door at the Scottsdale, Arizona location, and they have scheduled me for the week of May 13th. I don't know if they will have answers, but it appears that God is leading me to walk forward in that direction and see what happens. I will share more of the story as I can. It is so encouraging to see how He has gone before me to make a way. At the moment, I have not yet booked flights because I need to find someone who can travel with me and help me during my time there. My parents would love to go, but there are significant needs at home right now, and my brother, Nathan's seizures have worsened.

One praise report is that I have been consistently sipping 3-6oz of chicken broth each day and hope to keep this up. On the other hand, my pain, GI, and neurological symptoms are increasing and worsening by the day, so it is very difficult to fight through. I have also been very anemic, so I am trying to take iron supplementation to see if I can avoid intravenous iron but that will be determined at some point this week. When I focus on how hard it is I always start to sink, but God never lets go of me even in my most overwhelming and fearful moments.

Thank you all for your prayers which continue to carry me from moment to moment! I look forward to sharing more of His faithfulness in the days ahead. Right now, I would be so grateful for prayers for peace, sleep, hope, relief, endurance. Whatever God lays on your heart.

He is good.

New Appointment Tomorrow Morning

Hi friends,

I'm sorry for the long pause in updates again. I have been so grateful to be out of the hospital for the past three weeks, but my symptoms have been so severe that it has often been a moment by moment endurance battle.

I have not yet made a decision about the surgical j-tube and still need to learn more about it. I continue to receive my nutrition through nightly 12 hour TPN which has been very difficult. It has been a nice blessing to not be connected to anything during the daytime, though.

Tomorrow morning, I leave the house around 7:15am for a 9am appointment with a new motility specialist at Hopkins. I would be grateful for prayer that God would give wisdom through this appointment and strength to communicate clearly and know what questions to ask.

Depending on the outcome of this appointment, I am seriously considering going to the Mayo Clinic there are several more pieces yet to fall into place before that can be determined. I hope to have more clarity through the course of this week.

God has been helping me sip a few ounces of chicken broth each morning for the past week, and I am fighting to continue that and eventually increase. Right now, it is not working too well, but I'm able to get it down, and I am grateful.

It has been wonderful thinking this Easter weekend on how much hope we've been given in Christ because of His death and resurrection. One Day all this will end, and my body will be able to eat, and drink, and run, and dance, but until that Day, I want to grow in trusting Him more and loving Him more than anything else in this life.

Thank you all for your prayers. They have been a constant source of sustaining power.

Grateful.

Home Tomorrow?

Hi friends,

Thank you so much for praying for me today. My parents came up to be a support, and we spent most of the day waiting for my doctor to meet with us. He eventually did late this afternoon and said that he would like me to have a j-tube surgically placed. This is different than what I have had before. All of the prior procedures have been done by endoscopy and have not required sutures, a surgeon, etc. He says that my anatomy has changed and the tube being threaded down through the stomach and into the jejeunum is no longer working even though he tried to anchor it in with clips this past Thursday.

I need some time to pray about this and learn a little more before moving ahead, so I let him know I wanted to wait. In the meantime, he plans to pull out the messed up tube tomorrow morning at 8:45 and replace it with a G-button which will still give me access to my stomach. I will be going home from Hopkins on TPN for my nutrition again. After a few days of cycling, I just reached my regular night cycle of 12 hours last night.

Apparently, one of the reasons I felt so much sicker following the procedure last Thursday was that my doctor had so much trouble trying to get the tube to stay down where it was supposed to be, and it required more anesthesia and jiggling around. At least there was a reason for why I felt that way!

The past few days have been especially challenging as I have had the tube taped up and not functioning, while trying to adjust to the TPN again and fight through escalating symptoms and pain. Through all the desperate moments, God has not failed me, and He has sent the help I so desperately need. Sometimes it doesn't feel like that, but He never allows me to utterly sink beneath the waves.

So tonight, I need rest and then courage to continue to walk ahead after being discharged tomorrow. No one wants me to stay on TPN again. The risks are high, and I feel awful on it, but it keeps me alive. I will need wisdom to consider the j-tube surgery and if so, whether to have it done at Hopkins, etc. It is hard to think about going through with it, knowing that there is no guarantee that it will be successful on the other side, but if it was successful, it would be better for me than TPN.

All that to say, I have constantly been longing for freedom from all of this and am no hero. I don't want to keep fighting. I just want it to be over. I want to be free. It IS more than I can take. But it's not more than HE can take. He can enable me and promises to never stop doing it. Thank you for helping me not give up again and again.

So grateful. I love you all.
--------------------------------------

"For NOTHING is impossible with God." - Luke 1:37