an overview of my appointment that I just couldn't do before

As many of you know I had gone to see a new heart doctor who put me on a med that actually helped and then he changed his mind because I don't "meet the requirements"

He then said every doctor has there own treatment plan and he told me his would be to pull the port and the feeding tube and play with a bunch of my meds to see what works. He said to be honest I really don't know how to treat you exactly because they always send pots people to me when in reality it is not a problem with the signals in your heart but the signals in your brain so it should really be covered by a neurologist. Which I have done (he was less than helpful.) He also said my "old" doctor Quattromani really has way more experience and she is so much smarter than I am and the BEST IN THE STATE on how to treat pots and that is what you need. He said even though it is a 2 hour drive and that messes with your system it really is your best bet.

I asked him what he thought of a clinic and he said he has no idea which one to even send me to. Here is the kicker for me. He said to be brutally honest you are so young and I know it is hard but honestly there really isn't anymore treatment options. You can see Dr.Quattromani but really all she can do is continue what you are already doing and it would be that way with a clinic as well because we can treat symptoms but there is NO cure at all for your nervous system and despite medical advances (insert Jesus) we will never ever be able to cure a nervous system. It just isn't possible. (insert Jesus again)

So in conclusion he basically said we need to focus on quality of life instead of frantically searching for a cure that doesn't exist. Stop letting the fear of a flare up dictate everything I do but of course be smart about it, if it is a bad day then don't go out and be passing out all over the place. Your body will tell you when you can, should, or shouldn't. For now we are just taking it one day at a time but appreciate all of your prayers because this has been really emotionally hard on me.

I just don't know what to do.....Also people want answers. it's what we do. SO HERE

I went to my second appointment with the new electrophysiologist. I feel so defeated and scared that this will always be my life. Let me explain, every doctor has their own ways of treating things which I am quite aware of. He said "to be honest I don't really have the expertise to treat this because it is more related to brain signals so a neurologist should see you because it's really the brain that signals well, everything to malfunction and there is no cure. I already have a neuro who doesn't know what to do. If I stay with him he is going to do a whole bunch of changing med stuff, that sounds so scary, and so much can go wrong and given my history, it will. He also said that even though it is a 2 hour drive to see her,it might be my only chance outside of God.

Now I have the task of calling her and please PRAY WITH ME that she is willing to help all of us left behind. I have yet to find a new one ; where you don't want to throw shrapnel at there face because they said stop meds and go to the gym. He said the old doctor is the best in the state and is an expert in POTS so I really should stick with her even if it is a long drive.


I just can't write anymore but maybe soon. Here is your requested glimpse into what is going on. My body is so not stable at the moment so please pray for that too!

Thanks Chatham family,

I realized how thankful I am to be surrounded by compassionate hearts. Seriously guys, you guide me back to Jesus, drive me everywhere, go in hospitals to see me even though nobody likes the repulsive "sterile" smell pray for me and keep me out of a giant depression hole. Although, I will say there is nothing like face to face conversations that soothe the soul. So normally visits are welcome.

shattered

"You're shattered
Like you've never been before
The life you knew
In a thousand pieces on the floor
And words fall short in times like these
When this world drives you to your knees
You think you're never gonna get back
To the you that used to be"

"Beginning
Just let that word wash over you
It's alright now
Love's healing hands have pulled you through
So get back up, take step one
Leave the darkness, feel the sun
Cause your story's far from over
And your journey's just begun"
-Danny Gokey tell your heart to beat again

God knew I needed this song yesterday. and today. maybe everyday. If you have never heard it then listen right NOW. Reminders that He can repair my shattered heart and my whole life. I struggle with missing my old life so much but it is true my life is just beginning. I have survived more close calls than the majority of people ever will, love's healing hands have pulled me through You would think that I would just realize that I am here on this earth despite me and I could just look back on everything I have been pulled through and have complete peace about my current life. You would think. But no. I have very little peace with my circumstances, I struggle to find purpose and joy while I lay here stuck in bed because my heart likes to take breaks and then go flying to 140 for no reason.

What do I do with myself? why can't I work? Why do I have to do this? again? How did I get here? again? Will I be in this state forever? I have so many questions that I would love answers to but the reality is that I don't need answers. He has no obligation to give them to me. I could be like this forever. I think that is the hardest part, I don't know maybe it is His will for me to deal with this my whole life. As much as I try to not think about that possibility, I realize that it is there even though I can hardly cope with the thought.

I can't cope. No really, I can't cope with any of this. This is exactly why I must be pulled through each and every day. I am really not a very willing participant in the world and would much rather be with Jesus and away from all of this health stuff that I have been happily given. I know that He is allowing all of this for a reason but accepting it and finding joy in it is really something that I have to work on. My life is not ALWAYS that bad. I do have good days thrown in and I am so thankful for them. This life would be so much harder if every single day was just as bad as the last bad day. I GET to have good days. Not everyone gets those. I have had saeed abedini on my mind a lot lately. Could I do what he has done? Could I have that attitude and deep faith through all of that?? I would like to think yes but I seriously question my ability to not turn my back on the Lord if I was beaten, tortured, and dragged away from my family and the life I knew. Honestly, I never thought he would ever be released. Oh ye of little faith over here in my little world.

It goes to show how much power, love, peace and comfort can be found in the name of Jesus. He can enable us to get through each and every day NO MATTER WHAT. So much power in His name. He loves us. Always. Even in our doubt and fear He will never turn away from us. When all is said and done as believers we can't even pluck ourselves from the savior. That is love. A love I will never understand but I have seen exhibited in my shattered everyday life. He puts the pieces back together FOR me. My puzzle is just beginning and even though life is hard, I am so thankful to have Jesus. What would we do without? We have seen how that goes in our human ability to mass murder each other. Living in a sinful, shattered world is not pretty. Thank you God for your son so that we can have all of our puzzles pieces of shattered lives put together again.

feelings on chronic illness and this life that we all live

This will probably be one of my most depressing posts but it's real. Raw but real feelings happen in life to everyone but it's the "let me shove this in the closet reality" that we let people see and hear. Well, guess what? we all face trials of various degrees but we don't talk about them. I know anyone who reads this has a life trial, let's be open and real and say it, I can guarantee no one is alone in their specific trial. God made us to encourage each other through tribulation but if we can't be honest with ourselves and then humble enough to reach out, it doesn't go like God intended.

I am struggling so much physically, emotionally, and spiritually. The hardest part about having a chronic illness will probably surprise you. Emotionally. It takes such a toll on you to fight a disease every day and it drains you when you wake up because EVERY MORNING you have to wake up and make a choice on how that day will go. My choices are based on many things, it goes like this:

1. can I maintain my safety if I try to function and roll off the bed and walk
2. My will to not give up and just say I am done and not care if I waste away in bed
3. Can I fight Satan and roll out and just give life a try even if it fails I can say I tried
4. Choose to truly trust God to care for me as I try to live

That is just a glimpse, there are so many choices a person with a chronic illness has to think about before even making it out of bed that others just don't think about.

People. People are hard. It is hard to hang out with people and hear about life events such as engagements, pregnancies, and accomplishments they make and what their path, hopes, dreams,and realities look like. PLEASE don't feel obligated to not talk about these things around me, I care and I really do want to know! My struggle lies in the fact that I want all of that too, a spouse, kids, even a job. I want to live life and not just exist within it. I want that more than anything so it's hard.

I always feel like the world is just going on without me and really the truth is, it is going right on past me while I sit or really lay here and search for doctors that will say they can't help me and pass me on like a hot potato to the next doctor who says the same thing.

This is my everyday life, yes, it is hard to maintain a sense of love for your patients and their well being because you are running around like a chicken with no head but when you as a medical professional can put yourselves in their shoes it opens a whole new world full of realities; some good, some bad but realities you knew nothing about. Your perspective and attitude changes. This occurs for all really, not just medical people but for anyone. Put yourself in the shoes of those suffering and your heart will soften and change over time.

I know I have a purpose in life even as a non civilized human being but it just looks so different than what MY hopes and dreams and thoughts I had planned. It goes to show we have no control, we pretend but in reality we don't. We do have a God that promises to get us through the hard times but He says they will still occur.

In conclusion, as we battle this sinful world and how hard it is we have hope.

John 16:33 "I have said these things to you, that in me you may have peace. In the world you will have tribulation. But take heart; I have overcome the world.”

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."

If you struggle with depression like I do and it's flared up, do your best to read and focus on what is true. I am trying to practice this as I type, it's hard but with God all things are possible.

Life is hard

so, I saw the new doctor and the new med is happening but he doesn't believe in ports. The ONE thing that has truly helped me more than any med. My old doctor is a confusing situation. Basically she all of a sudden went to the VA 2 hours away. When she left we had 2 weeks to figure stuff out and she was still going to be there and help and she said she won't loose practicing rights so she can still manage my stuff. uhhh no. There is no contact information for her and I have heard various things on her practicing rights.


Now that you have that good old background, I will say the source of my struggle is that my port is being weird and it likes to leak the fluids out and it is painful and my nurse said it probably needs replaced. I am trying to trust God but yet my true feelings are still there no matter what I do. I can't make them disappear, I know all the truths in my head but it stops. There is no off switch to feelings that I have found. Yes, God gives peace and I shouldn't worry, but I do. It might not even go like I will write in a second but I'm scared that it will go that way.

The problem is if it needs replaced my new doctor probably won't allow anything other than pulling it with no PICC line or replacement because he wants it removed already. I have gone a couple of days before without the fluids and I felt horrible and almost passed out multiple times. Before the port was placed I was passing out 6 times a DAY and I can't help but to think how bad it will be if I don't do that at all. I am in what if land, I know but it is a good possibility that it will go that way and I just want someone to realize hey this does help her we can continue and replace the port but I have my doubts on this new doctor.

I am trying to give it to God but feelings still remain so please pray for me I am really struggling with this even though I shouldn't be cause God, but I do.

updates

1. I see my new specialist that wants to take my case on Tuesday at 10:30. Please pray for wisdom and peace. A part of me feels like this is my last hope but ya know there is Jesus so that isn't truth.



2. My birthday post: (late. shame.)
I feel incredibly blessed to have made it to 24 with so many close calls but God wants me here for something. When you are almost bed bound it's kinda hard to not feel useless. Insert Jesus here. My life has been pretty crazy but I am so blessed to be surrounded by a whole church family and friends! It means the world to me to just be prayed for given this situation that I am in...again. I'm good at it, obviously. It is so hard to bring myself to do things like birthday parties because of the crash that follows. Today I can barely walk, or move, or breathe, or do anything besides laying in a heap all day. Having said that being able to celebrate with some crazy people was absolutely worth it. I needed it. I needed to know that life still happens. God knew that so I was able to function for it all. He is awesome. I made it this far and that alone is amazing. Thanks for everyone who wished me a happy birthday, it really was the BEST birthday weekend I have EVER had, such a blessing.



Lastly,
I don't know what the next year holds for me but I know WHO holds it and blessing abound despite and through circumstances, we forget that a lot. It's been a very hard year but I am not alone and we shall see what the next year of my life holds.

Newest new

Well, to begin all this out let me just request your prayers as decisions are made and for divine intervention in it all.

My previous electrophysiologist moved to fort Leonard wood and I was slightly upset about it and how it is going to change things but I absolutely admire her decision to switch to caring for those that risk there very own lives to save the community and world so I can't be too upset about it but it did bring change.

On Tuesday I went and saw a new one and he was VERY honest which I appreciate but at the same time you don't want to actually hear it. He reviewed my records and basically said there is nothing that he or any doctor he could transfer me to can help. He said Dr.Q has done so much for me, more than he would have even done.

Then he said this is a complicated situation and diagnosis and there is no standard treatment. He said there is no cure, it is a lifelong thing and because you are so young and your quality of life is so poor the only thing I can offer you that might help is to go a special autonomic disorder clinic. Problem: he doesn't know how "getting into one" is achieved so I have to consult my primary care to get that ball rolling.

He would prefer for me to go to The University of Toledo Health and vascular center which has the leading specialist in this. I also did research on the like 4 mayo clinics in Arizona, Florida, or Minnesota. The issue right now after talking to a couple places that I am looking at YEARS to get in. Yes, years for my only hope outside of Jesus.

So thankful for the hope I have in Jesus I do not understand how people make it through this without it. Basically, they go from fad to fad hoping that maybe "this one will help me" and really the focus needs to be switched from the fads to the ONLY One that can help and heal you. Fads might work for a tad but in no time you will be searching for a new one if it is not from the Lord. Our peace should come from this:

Matthew 11:28-29
“Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls."

That does not say turn to fads. yes, I realize God puts things and people there to help us. I am not saying that some of these fads could really be given to you by God. He is big and can do as He pleases so it is not out of the question altogether but look at your motives because I have seen So many people who try out all this stuff but they are replacing God and not "consulting" and using God to guide you on what HE wants you to try not what YOU want to try in desperation. God can give you something that could heal you but you cannot rely on that you must rely on HIM.

I am preaching to myself hard core right now as I struggle with new information and what will my life be like if no cure is available and my desire to look for hope in all the wrong places. We all struggle with this in one way or another and I am putting this out there mostly, for myself because I have to do some serious self preaching right now. Lord Jesus, come quickly.

In conclusion,
please pray for me, my family and my doctors as we make decisions on what to do going forward. It is complicated and we need God's direction so much right now.