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.

crushed, scared, helpless

for those that have been following my messy life, I wanted to update you on my situation.

My current palliative care service all of a sudden said that they will not be giving me any more pain medications because the  medical director physician changed his mind on giving me anything since my pain can't be proven (INVISIBLE ILLNESS PEOPLE ARE UNABLE TO GET HELP I GUESS) so the FDA "could"  look into it and the doctor does not believe my symptoms are that bad and require palliative care. pffttt

 (I don't get why this is happening right now considering they have been prescribing it for months) 

They tried to pawn it off on my primary but get this. MY PRIMARY IS WHY WE DID PALLITATIVE CARE IN THE FIRST PLACE SO I CAN GET HELP WITH PAIN AND OTHER VARIOUS THINGS.

I just spoke with the primary and it is true he will not fill anything because palliative is supposed to do it. That's why he sent me to them in the first place.

PROBLEM: the "comfort measures" aren't happening anymore so I have nothing to take for the severe migraines and other things. Everything was  ripped away from me and unfortunately without home meds it is very likely I will have to start going to ER's and having hospital stays for pain control all over again like I had to do in the past. I don't want to go through that again. Like really don't want to do that.

My last resort is a longshot but we are going to try it anyway. I am switching companies and going to SSM palliative care to see if they can help and are willing. My primary is sending a referral and I ask you to pray that it gets done in a timely fashion and the big prayer request is THAT THEY WILL ACCEPT MY CASE AND SEE THE NEED.

words cannot describe how I feel right now. I have been fighting this disease for almost 5 years now and I am tired. I am tired of the "I can't help you" answers, I am tired of feeling like a drug seeker asking for medications, I am tired of nobody believing my symptoms are bad because they can't see them, I am tired of being pawned from doctor to doctor, I am tired of having to rely on everyone for everything and so much more. I need all the prayers I can get.

going under

I haven't written in awhile because words just are not happening. I am going to try but if it doesn't make sense just pretend it does. mk. The decline was that I had two seizures, one day apart with no known trigger. My first seizure was witnessed and in God's perfect timing I had a friend over who knew what to do. She put me on my side and called my dad who was just running up to Walgreens really quick. I kept going in and out of consciousness for awhile. It is the weirdest feeling when you come to and everyone is staring at you and you have NO IDEA what is going on. I remember asking my dad what happened, he answered and the out again I went. It took awhile for me to compose myself but I came out of it and contacted my neurologist who said it is just going to happen at random with my syndrome and I am already on seizure medicine so it must have been a fluke and not to worry about it.

No fluke. The day after I woke up super confused and realized that my tongue was hurting and I went to look at it in the mirror and noticed spit up on my face. I had another seizure in the night and bit my tongue fairly hard but I am blessed to have woken up in the first place, God isn't done with me yet obviously. There are symptoms that occur after a seizure but in my previous ones it all was gone within about 24 hours. This is a different story. My usual symptoms include headaches, confusion, drowsiness, muscle soreness, memory loss, and weakness. Like I said this all usually stops within 24hrs but these symptoms are being persistent. My muscles lock up so bad that at times I cannot even turn my head and that escalates to an increase in the frequency and intensity of my migraines.

So I made an appointment and went to see my neurologist and he said that they were very violent seizures and the muscle pain and increase in migraines could last for months. We discussed pain management and I left that appointment feeling so hopeful that he will set everything straight and send letters to those doctors that are taking the hands off approach or not palliating like they should. Great right?

no. in typical doctor world what he said to my face is not what he put in my chart. He didn't write anything about managing my pain like we talked about or sending letters to the doctors saying they need to step up. Seriously he just put that we are increasing my seizure medication and to follow up with pain management. My heart is in a million pieces right now. I DON'T HAVE A PAIN MANAGEMENT DOCTOR BECAUSE 4 OF THEY STATED THEY CANNOT HELP ME. This is also why I went on palliative care because I ran out of options.  The problem is there is some reluctance to do things and I thought after this visit it would be worked out. I talked to my palliative care nurse for 30 minutes last night and she will speak with the doctor but it is not likely that anything will be done. This syndrome is relentless. I will continue to have pain popping up in various severities and places because that is what goes along with the ride of my syndrome.

unbiased comfort measures is what I thought would happen because it's palliative so it should be do whatever it takes regardless of my age or any other factor but it's not working out for me. I'm defeated. With God I do have hope though because He is all that is keeping me from going under.

overdue update

This last month ish is really teaching me that  all of my hope needs to come from God. I'm sure most people can remember a time when it feels like your whole life is falling apart and you can only sit back and watch it go down. I'm facing that right now, one day I want to have a cheerful blog post for  you all but that just isn't going to happen right now, life is hard.

About a month ago I saw the director of dermatology with Washington university and he told me he doesn't know what my issues are but he said we will figure it out and he said he will not pawn me off on another doctor because we will figure it out it just takes time. I left that visit feeling very hopeful that someone will really help me. He ordered some tests and stated we will start with the basics and then work from there. Sounds fantastic. I got a boost of hope.

Well, I got a call that I wasn't expecting and my heart dropped as the nurse proceeds to tell me that all the test found nothing other than confirmation that I have dysautonomia and that he doesn't know what is going on but he can't help me and told me to follow up with the immunologist. I told him that the immunologist has no clue and can't help me so sending me there is pointless. He just said he doesn't even have any doctor to send me too or any treatment measures to take so I don't need to see either one again.

To be honest I am devastated. I am all the way back at square one. As if that wasn't enough I contacted my pallitative care nurse to see if we can manage my pain better and I was told that the doctor is against helping me manage it better. Apparently from the very beginning he has said he wants to take me off ALL OF MY MEDICATIONS because he doesn't "know if we are treating the syndrome or the side effects from the medications I am on" ... he said "I don't understand your resistance to stopping meds that could possibly make you worse in the long run. I believe we all are after the same goal, to improve your health and quality of life."

I want improvement but I tried to go off things and it got bad fast and I am not doing that again. He seems to think I will "get better" . The problem is my body doesn't respond to things like everyone else does and this is why I am on as many medications as I am. It's been a trial and error process for years and right now I am doing better on the medications I am currently on than I was before. My concern in my self advocacy is that this condition is not well known and is very treatment resistant and I have exhausted those. That's why I was sent to palliative care in the first place. Without a miracle all options of truly making a major good swing in my health and "getting better" have been tried through a very very long 4 years of fighting to get me to where I am so after a discussion with the pallitative care nurse it looks like I have convinced them to just keep doing what we are doing, not what I was hoping for but I will take what I can get.

Even though I am confused, frusterated, lost, and discouraged I know God is doing things for His glory and I don't need answers to trust. My heart is not in it yet but I am working on that. p.s- God gave me a glimpse of His love today because it looks like my insurance company is admitting that they messed up and all of my bills are their responsibility so it would appear that we owe NOTHING. Happy tears went down today and God is good, I got my answer to a prayer request I have been depressed over for months. The war is already won.

"Day after day, night after night
I will remember, You're with me in this fight
Although the battle, it rages on
The war is already won
I know the war is already won

Surely my God is the strength of my soul
Your love defends me, Your love defends me
And when I feel like I'm all alone
Your love defends me, Your love defends me"-Matt Maher

struggling-prayers needed(novel warning)

For a multitude of reasons I woke up this morning just feeling lost. I don't know what I'm doing in life, what God is doing with me, what my future holds, and I'm battling with the "how did I get here..again?" sadness and defeat.  I feel so alone. Not the kind of alone from a lack of physical/prayer support  but the alone in a world I never wanted to enter, alone in the pain that no physical support could even touch, the alone in my day to day fiasco of keeping myself alive, the alone in the fact that nobody can truly understand how hard this life of mine is day by day. It's brutal in every possible way.


I feel like I'm not living but just existing.  I am caught up in the fact that my hopes and dreams appear to just be fading away. Everything feels like it's fading. It's just me and God. I know He is always me and God but the feeling of it is heavy hearted right now.(don't judge me) I know He is all I need and He will get me through this, I am just stumbling through life at the moment. It is an odd feeling when you reach the point of realization and reality that God is truly 100% ALL you have. Yes, I know He is all anyone has but the feelings that come along for the ride really mess with you.


Unless God decides to do a miracle (which would be #5,000 in the book for me!) this is my reality. I am still pretending it's not. My dad and I were talking and he used the phrase "disabled adult" and I almost lost it I don't want that label. It feels so final. Just typing it was hard. How do you even begin to wrap your brain (what's left of it lol)  around the fact that this might be it. I might be stuck like this forever. It scares me. I don't even know what it feels like to be healthy anymore, I can put on a brave face like at church and stuff even though it feels like my heart is crumbling. Someone please tell me where my life went.


I lost my ability to drive, my ability to go places or be outside, my ability to be left alone and my ability to pretty much do  everything that I loved. Just poof gone. I now spend my time in bed with tubes going everywhere to keep me alive. Again how did I get here?! I don't know but it is so defeating. Please God don't let this be my life forever and if you choose not to you gotta carry me because I got nothin'.