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.