crushed, shattered, defeated, all the things

I have been struggling to put into words the news I got today but here goes nothing. Due to an insurance saga my home health nurses that manage my port and fluids had to re-open my case.  I was informed a week ago that I need a different doctor to sign for my infusions because the doctor who put in the order originally now works at the VA hospital 2 hours away. SSM went ahead and called all of my providers including palliative care and they ALL refused to do it because they "aren't comfortable ordering that she needs to see an electrophysiologist"

I have thus far seen 6 electrophysiologists  and I was told by all of them that they cannot help me and will not keep me as a patient as long as I am doing IV fluids. Pallitative care gave me a couple recommendations but the odds of them agreeing to sign off on the orders is close to 0. My original doctor that moved even said I will probably not find someone who will agree to it. It doesn't seem to matter when I tell them that fluids changed everything for me, they helped me more than any of my medications ever have.

Where does this leave me? My old doctor said I can go to the infusion center at St.Marys where she has privileges but I am not sure how that works because I currently get 500ml twice a day and I can't move into the infusion center. So daily is off the table. I don't know what is on the table besides my entire life.

 I am scared. My heart is so damaged from defeat. As tough as I seem to be I have my breaking points and this is a HUGE one. I am scared of  passing out 6 times a day, I am scared my heart rate won't stabilize, I am scared doctor's won't believe me, I am scared of  hitting my head and bleeding out and so much more. I am kind of in shock at the moment and trying to process this but I need all the prayers I can get right now.

I am not ready for symptom roulette.

A little broken

Today has been nothing short of a nightmare that I can't run away from and my faith is taking a hit. I'm at my breaking point. Just when I feel like things are going to get better it all seems to fall apart on me. I don't know if it is just because I'm still learning how it works but this palliative care thing is not going like I expected. I was so excited and peaceful over it because it seems like for the first time in this long journey I was going to have someone who believes me and will advocate for me and do what it takes to manage my symptoms.  I didn't feel like a drug seeker and they didn't treat me as one for once and I felt more hope than I have felt in awhile.


Well, all of that is crashing down on me. They said as far as pain management goes "if I need it then take it and don't worry about the quantity" when I started this program. Music to my ears right there!!
So I did... and now apparently I am  drug seeking because I took more than originally prescribed. Yes, like I was told. durp durp. 


 They also said they will manage correspondence with other doctors with a COMFORT FOCUS regardless of what comfort measures may need to be used because they are there to help me be as comfortable as possible. These words were exactly what I needed to hear. I have been fighting an incurable disease for years now and I am so far beyond weary. It felt like a miracle. Didn't last long.


I guess I'm in the fight again. I was born fighting for my life, my junior and senior years of high school were spent in a hospital fighting for someone to believe me and help me as I practically lived there, I fought through both and I conquered with Jesus by my side.  I went to school and worked for 3 years, helping other people fight their own battles and I never imagined I would be the one fighting again for myself but it shows how not in control I am. If there is anything that I learned the last few years, it's surrender. Learning and doing are two separate things. It is so hard to do despite my knowledge and experience of God's faithfulness but I will keep at it until Jesus takes me home.

"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 

I know You're able and I know You can
Save through the fire with Your mighty hand
But even if You don't
My hope is You alone
I know the sorrow, and I know the hurt
Would all go away if You'd just say the word
But even if You don't
My hope is You alone"--mercy me even if

valleys

The last few months have been hard and they still are, I won't deny that I have pulled the "give up" card many times but especially the last month. Every word of this song sums up my thoughts in a nice little package and I could post it by itself but that's so impersonal.


I caught myself wondering if God could see me down here in my self induced lonely valley afraid and crushed. It just feels impossible to lay this life down. How do you lay down something so big and scary? Then while listening to this on repeat for days I got my answer. "let him show you how you  can lay this down" I can't and will never be able to lay this down but I know someone who can enable me to do it in faith. "There's a place where fear has to face the God you know" yeah that one God I know...that one who can see me and keep me from going under. The one who can make beauty from ashes.  "He is breathing on your dry bones and there will be dancing, There will be beauty where beauty was ash and stone. This much I know"


The only God who can sustain me, comfort me, save me, and help me. My soul needs that help. My faith might be thin but I am so in awe of how Faith can be restored when enabled by the source.

surgery is complete-thanks

Well, that was rough. The surgery itself took quite a bit longer than expected so they had to nasal
intubate and do a foley cath part way through the surgery.




I then a spent a couple of hours in recovery tackling my drug resistant self. I think I was conscious for maybe 1 hour out of three to wake up because I am always bad with that. It took awhile for me to get the pain under control but eventually they figured out a good combo and I was sent to recovery #2


(kind of like a step down unit) where I stayed for almost an hour before being released.


I am so thankful that it is over but we all know we have to have side effects of course, I have a very sore throat and a bleeding nose from the nasal intubation, urinary retention, stitches in my mouth, and coughing up the blood from my throat.


I am weak (as usual) and not very steady on my feet  and woozy at times. I will be calling my surgeons office tomorrow because my current pain medication is barely effective. Story of my life.










I want to thank everyone for the prayers that began during my battle in 2015 and through the  journey that has forever changed my life. Your support through the ups and downs, spending nights in ER's, providing transportation, financial support, advice, company, phone calls, visits basically all the little things that remind me that I  am still very alive and not just existing and taking up oxygen. Your support has shown me that I have worth and God can still use me even if I leave my bed twice in a day. He can use my sorrow and pain and the tears that at times don't stop for His glory and for other people, He can use me as I peacefully..or not... pass out on the floor at walgreens, because God caught me in His arms and protected me,  He provides me with the ability (I fail at this like everyday of my life ) to witness to all 5 billion doctors and medical staff I have seen. We all get so many chances to reach out to others and save the lost from the depths of hell and we fail. We fail the lost, we fail ourselves, and we fail GOD. Thankfully He has the power to redeem, save and restore DESPITE US. A MERCY WE CAN'T COMPREHEND AND A GOOD GOOD FATHER.

mixed emotions

My immunologist called and said the good news is I don't have Mastocytosis because apparently it is a very deadly disease. So that is a plus. Dying is usually frowned upon. BUT we still don't know what my body is trying and failing at doing. so my next step is seeing a  SLU dermatologist/immunologist...I also have 2 heart doctors to make appointments with.

While I am so grateful for the god news I am still in pain for no known reason and I am left with no answers. I just want a diagnosis because you can't do anything without that. This process is really discouraging and just know that sometimes I have to pull away and re-group so if I vanish that is why. Well, outside of some medical emergency but that would spread like wildfire.

My pallitative care nurse saw me yesterday and is just as confused as I am but she said that basically every Wednesday the whole team meets and talks about patients and how they as a company can help and she is putting me at the top of the list ( yay me) She said they will establish a plan and work together to help me out.

lastly, I like the word "team".

peace

 I just saw my immunologist and she said she is not sure exactly what is happening so she drew blood tests for mastocytosis and she is sending me to a clinic with SLU that specializes in this kind of thing. Also, I am banned from tape anywhere close to my chest since tape appears to be a trigger.


I am  asking for your prayers because as you know I have dental surgery on Friday and I am having anxiety issues which only make things worse. . I ask for peace, comfort, and pain control afterwards. I also ask for prayers because there is a chance that having a "wound" in my mouth could trigger a worse bodily attack. but  for this moment I need peace that God has this under control and my worries  are pointless, I just simply need to trust that this is out of my hands and I serve a mighty God who has a plan in all this.

palliative care-NOBODY PANIC

I had my palliative care evaluation today. Let me explain why you don't need to panic. I am not dying, this is not hospice. Two very different things. So stop it.
Palliative care by definition is specialized medical care for people with a serious illness. This type of care is focused on providing relief from the symptoms and stress of a serious illness. The goal is to improve quality of life for both the patient and the family. I so far have 3 illnesses with no cure and each one carries with it a different set of symptoms. My new care team is composed of my own nurse practitioner...(NP), social worker and a physician they have on staff. They work together with my current doctors on symptom management but they also can prescribe new medications that have the potential of helping me be more comfortable. There main focus is helping me manage all this.
This evaluation could not have gone any better than it did. God has His mighty and gentle hand on my life, guiding me through this journey and it is extra special when you can obviously SEE IT go down. One of my diseases is mast cell activation syndrome which is an autoimmune disease that is not well known and when I said I have an appointment with an immunologist on the 23rd about it my nurse practitioner said she used to work for an immunologist and is familiar with it and the treatment options so we discussed those a little bit  but we won't try any treatments until I see the doctor. BUT SHE KNEW WHAT IT IS GUYS. Providential much?
As we discussed things we had the radio playing in the background to Joy FM and the NP said she loves this station. Something so simple sent a wave of hope and peace over me that I haven't felt in a long time. This is the help I have been waiting for. Someone who loves Jesus and is devoted to making the best of this situation by being "in my corner"  in the medical world. Someone to stick up for me and will do whatever it takes to help and be here for me, even trying new medications that my current doctors won't touch as they are experimental. I have been thrown around to so so so many doctors that either say they can't help me or develop ego's and think  everything I have been doing is all kinds of wrong and should never have happened and they will only accept me as a patient if I do what they say.
Help. I have help jumping through hoops, sifting through doctor opinions, and making educated choices. I have been putting everything I have into being my own advocate and fighting for every part of my life and treatment for so long that I didn't know the toll it was taking on my already fragile body. A weight that I didn't know existed was lifted from me today. It may have taken 3 years for me to begin to give this to God all while I ignored the fact that He has been waiting patiently for me this whole time. My soul was reunited with the God of this valley no thanks to me. Faithful.


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.


He wasn't lying when He said this. He just proved it.  I'm clinging to it right now as I share with you the other part of my day that contains a prayer request. About an hour after they left I got a phone call that my blood work I had drawn the other day came back showing a potential infection somewhere in my body and I have to have further testing tomorrow. I have my pre-op done on Wednesday and I ask for prayer that whatever my body is doing does not prevent me from being cleared.

"I know You're able and I know You can
Save through the fire with Your mighty hand
But even if You don't
My hope is You alone

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"--mercy me