theme faithful

It has been a really rough week  month for me,  I'm tired of being sick and tired and that little pesky defeat thing just always finds a way to creep in. I am desperately seeking redemption from the extreme guilt I am carrying around. Like hello God JUST did a whole pile of miracles on my behalf . I am thankful for these miracles but apparently that's not good enough for me. He just rescued me when I felt like I could go no farther, showing me His never ending faithfulness and devotion to me and I want more..


This is kind of embarrassing to say but I will do it anyway. It's kind of like ok thank you God but um I'm not content because yeah you enabled my treatments and all that but you didn't take it away and that is what I REALLY wanted so I am going to go visit pity party land again instead of rejoicing in your devotion.


The level of devotion here is obviously not equal. I struggle and fail. My heart needs some work I would say but faith abounds with Jesus and He is pretty darn good at changing hearts. There is hope.





 I opened up my prayer journal in desperate need of Jesus to put these shattered pieces of my heart and life back together and this is the page I opened up to: I have no more words.

mmmmm today

I knew today was going to be tough but I wasn't expecting this tough.  It feels like "if it could go wrong it will" and I am battling with the feeling of pure defeat .. I woke up so sickly and it all went downhill from there.


My nurse came to "discharge me" today and if that isn't enough she went to put the new needle in and it wouldn't go in right 7 times. Yes 7. I even tried once and it wouldn't go and lets just say these needles ain't tiny. She gave up and after letting it heal a bit I was finally able to get one in after 2 tries . pain. pain. pain. I have it in but it's temperamental leaving me in a spot where despite my allergy I HAD to wear tegaderm to keep it stable. I have leftover supplies that I am using to see how far I can get without home health, I already know how to change the needles and such so I will be doing that myself every week. If this needle I put will stay working that would be great. What also would be great is if I don't react to tegaderm.. All in a perfect world (Jesus Come Quickly, pleaseeee)

I then went to see the dermatologist who still won't do a biopsy and she is sending me off to a clinical study thing at wash u called the itch center. This burning and tingling and redness is APPARENTLY nothing but my normal skin tone and the pins and needles feeling that takes over my entire body and is oh so painful has no origin and this clinic might have an idea to make me more comfortable because "none of this is medical"...pain is real though. Imagine the pins and needles that occur when a limb falls asleep..take that and put it over your entire body even the eyeballs.




please pray that this needle will continue to work, my pain to be under control, and that my blood pressures and heart rates won't get too bad because my fluid supply is limited and if yesterday is any indication of how my body will handle it, it's not pretty. BP  80/40ish Pulse: 140
POTS-3
ME 0000000

verses for the valley--possibly my final update for right now

well this is it... I got my FINAL notice that my nurse will be here on Thursday for me to fill out infusion discharge paperwork because I don't have an "acceptable" doctor treating me and giving orders. I have done everything I can to fight it but It's happening and there is nothing I can do about it. I have spent so many hours calling all over the place to get someone to help me and with each call came the blow of we can't help you. In the last week I have called 15 physicians. I have even called "find a doctor" phone lines and no go. Every time I think someone is going to help it gets shot down. Needless to say I feel pretty discouraged (that word doesn't even cut it right now) because no doctor=no treatments.


THERE IS SOMETHING YOU CAN DO TO HELP ME though. I need your go to bible verses when it feels like life is crashing down and you are dangling with no where to turn. Also, if you are comfortable doing it I could really use your testimonies/examples of God's faithfulness and providence that brought you through some hard times. or in general really. I am so thankful for this church and everything they do to support me through prayers, visits, phone calls, rides,  and the most important thing of drawing me back to Jesus when I feel abandoned.


I am also thankful for those that call me randomly (like today RIGHT when I needed it most)  and share with me the trials they faced or continue to face and how God worked in their lives in providential ways.


please note that I might not always answer the phone or I could decline your offers to visit if I feel bad. Please don't let that stop you from asking or calling just don't take it offensively if I decline the day or don't answer the phone. I find some comfort in the fact that you are thinking about me enough to ask. You are however more than welcome to leave me voicemails of encouragement, hope, and peace or even leave me a prayer to keep me God focused cause that my friends is a hard thing to maintain.

update

God works in mysterious ways that don't make any sense to us. I got a call from home health and they presented me with 3 choices:


1. go to the ER and demand that they hook me up with a doctor that will sign for my infusions--so not a fan of that one and I doubt they would know who to send me to since everybody else didn't


2. call the infusion company and try to get one of their doctors to do it---did that and no go awhile ago


3. They provided me with the name of the doctor who signs off on saline infusion therapy for their other POTS patients.


I jumped at the possibility of #3 settling it all. I called just to be told he wasn't taking new patients but they have residents in the practice that can consult with him when needed. I have an appointment to see one of those on the 22nd so you can be praying that works out.


I then called my home health department and left a voicemail stating I had this appointment scheduled and I never heard back so for now it would appear that they will continue services until that point. I could be totally wrong though so I am not assuming I am in the clear quite yet. I could also encounter a bunch of insurance issues that could be a roadblock as well. Literally, God only knows.


I did finally get into see an immunologist today and this doctor is fantastic. After explaining my skin issues and what led to them he was so confused and said he didn't think he could help me because it's not plausible to test for every part that goes into various adhesives. I explained how my face turn red and he said this is very interesting and because I am only "allergic" on my upper chest but nowhere else he walked over and scratched his pen on my skin and almost instantly a welt began to form. He made me stop talking so he could think and then said he really thinks the cells that compose that are a group of mast cells.


This would make sense then that it's not a contact allergy because that would not be isolated to one spot so the reaction I have is from damage or irritation to the skin itself not an allergen. Everything began to add up because I first developed this issue during a port surgery which is major damage to the skin obviously and every time my port needle is changed I have issues as well. The tegaderm was the suspect because it reacted but what really is going on is it kind of tugs on my skin damaging it and when I take it off it is even more damaging to the skin.


He said he knows nothing about Dysautonomia so he is going to do a lot of research on my situation but he is determined to figure this out because it is a challenge and apparently he likes those. He hooked me up with a dermatologist to get my skin biopsied and tested for mast cell congregation and we will go from there but all of the symptoms add up. I have this appointment on THURSDAY at 3:30 and I ask for your prayers because I am a tad nervous about it.


"Let every heartbreak and every scar be a picture that reminds you who has carried you this far Cause love sees farther than you ever could and In this moment heaven's working everything for your good"-DG

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.