emotions

Being sick like this produces a whole lot of different emotions at different times. Today I am just sad and slightly defeated--which I feel super guilty about. I hate having to go to the infusion center everyday but yet I know it was an answer to prayer and a blessing God provided when we didn't think things were going to work out. This is why I feel so guilty for feeling like I do.

I am longing for my life back. I want to go back to before all this. Back to the times when work and moving out were my achievements. I never would imagined being an almost 26 year old, on disability and debilitated. I guess God has other plans for me but I'm going to be blunt and real in saying I don't like it. I know God gives and takes away and is still Lord over it all and He wants everything for my good and for His glory. It is just hard to see that in the middle of the pain and heartbreak.

Jeremiah 29:11 For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.

I know the root of this is my identity. What AM I REALLY PUTTING MY IDENTITY AND HOPE IN? Doctors, treatments, medications, social status, functionality, friends, money, healing, joy, happiness, self-reliance, finding a husband, a family, friends, and abilities?

Honestly, all of the above. I know I have to chisel those away to get to the only way in which any sort of healing can begin. It begins with the blood of Jesus Christ that saved me and sustains me to this day. There is safety in the hands of God. There is nothing but heartbreak in what I listed above.  I know this and now the work begins of trusting. Easy to say, hard to do.

We pray for wisdom
Your voice to hear
We cry in anger when we cannot feel You near
We doubt your goodness, we doubt your love
As if every promise from Your Word is not enough
All the while, You hear each desperate plea
And long that we'd have faith to believe

When friends betray us

When darkness seems to win

We know that pain reminds this heart

That this is not our home

This is not the end. I will be healed. This pain is not forever. God is good even when we don't understand His ways. This all has not played out like I expected it too but God's pulling me through and for that I am thankful. I could not be in better hands.

Blessings - Laura Story (with lyrics)

I finally have some good news to share with everyone! I got a call from my primary care and he said he spoke with a heart doctor that I saw in the past who at the time  would not take me as long as I had this port and feeding tube. My primary spoke with the heart doctor again and it turns out that he has been working with the doctor who diagnosed me and she is a big support on infusions. The heart doctor I saw now believes in infusions for certain cases BUT he is uncomfortable with me doing it in my home.

He was able to get me set up with the infusion center at Christian hospital Northeast! The hard part is I have to go to the center every day for around 2 hours while the saline infuses. Rides are going to be a huge issue for me. My first one is on Monday at 9am and at that point I will learn more about the process and the different times that are available. Although, this is not ideal I am so thankful for God’s faithfulness and this is a huge blessing and answer to prayer. It didn’t play out like I expected and I know going to the center daily is going to be hard but God will work it all out. He is faithful.

                                                                  We pray for wisdom

Your voice to hear
We cry in anger when we cannot feel You near
We doubt your goodness, we doubt your love
As if every promise from Your Word is not enough
All the while, You hear each desperate plea
And long that we'd have faith to believe

This song has been on my mind all day long, it is a good reminder of the truths that can be found in hardship.

the whole story of what you are praying for

I know I have a lot of people praying for me and I was convicted to share what I need prayers for. So this is my story.

As you may or may not known, I was put on pallitative care because I have exhausted all treatment options. Well, that went really well at first, they got my pain under control and were really supportive but then it fell apart. I got an email from them saying that they have to prove that I am in pain in order to do my pain meds and since my pain is like “invisible illness” they cannot prove it and told me they will no longer fill anything and I have to go to my primary care for meds not them.

Here is the thing…my primary care sent me to them for pain management because that is what they do. Comfort measures. Primary care does not do that. My medications were stopped immediately and you are supposed to wean off of them and as my primary did say “they cannot just stop them all of a sudden” I called pallitative care stating that they cannot just stop it without giving me time to find a new doctor. I was told I was wrong. I called again and asked for management to call me. That took 2 days. She called and said I am still in their care and looking at my records she couldn’t see where anything I just wrote occurred and said she would do investigating and speak with the doctor and call me the following day.

Surprise surprise nobody called. While I was dealing with that I also got stuck in the middle of my primary and neurologist disputing what to do because they both claim it is the other individuals job to figure out how to help. Nobody wants to do anything. I did an evaluation with a different pallitative care but no doctor will cooperate. I have communicated with 3 other companies and I am getting turned down everywhere. My doctors are giving up because they don’t know how to treat my severe case and I can’t find new ones that are willing to try.

My last effort is trying a pain managemnt doctor vs pallitative. I have seen and/or spoken with 5 of them and they will not take me as a patient. Right now I am waiting to hear back from washington university and it’s the last lead I have.I am not in a good situation here. Ever since it was stopped I have already landed in the hospital for 3 days, I don’t know how my body is going to keep reacting.

Also the HUGE concern is that if the original pallitative care company drops me as a patient I loose my IV fluids. It was hard enough to get them to sign of on fluids in the first place and my other doctors refuse. That could get bad really fast. They also are saying I have to have an electrophysiologist to manage all this. 6 of them later…”they can’t help me”. Yeah I would be glad to have them manage it if you can find one to take me. What am I supposed to do?!

All of this leaves me without a willing physician to turn to since nobody wants to touch my case anymore, the potential for loosing fluids and making my blood pressure plummet is scary, and I could end up in and out of hospitals again for pain management. I would appreciate prayers for this last lead with Washington University.

faith

I am fairly sure my dad has told me "you gotta keep trusting" like 5 times a day for a week. My hysterical breakdowns are frequent these days. So is me saying I don't understand what God is doing, like what in the world is your plan here cause I am not so sure I like this one. I cannot even explain what I am going through right now, it's like walking in a pitch black tunnel just waiting for the light. This tunnel walk involves no light right now and it is so heartbreaking.

BUT


They say it only takes a little faith
To move a mountain
Well good thing
A little faith is all I have, right now
But God, when You choose
To leave mountains unmovable
Oh give me the strength to be able to sing
It is well with my soul

My faith is lacking but I'm clinging to it because it is my only hope, my only chance at seeing that light, my only source of strength. My everything. With this knowledge I do not give up but let me tell you it is so hard not to loose that faith! Really really hard.