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