struggling with everything

Guys, I will be honest. I have not written in awhile because  I am struggling. I don't really show it but inside it's a war zone. I am overwhelmed by every little thing these days.

As far as my health is concerned, it's complex:

first of all, My port was not working right so I went to a dye study at barnes which turned into a 3 hour very difficult surgery and I was told if I ever need another one it will be an invasive surgery with one implanted on my hip. Lovely. I then got a major allergic reaction from something used on my skin in surgery causing hives galore and a trip to get it looked at for possible infection but it ended up being "just" a raging allergic reaction to who knows what.

I think the last time I wrote something the word "remission" was being discussed. Well, I have increased near pass out spells to multiple times per day. My home health nurse said she has noticed a rather large decline as well. My endurance has greatly diminished and I struggle sometimes to do absolutely anything. I was taking a shower a  weeksish ago and I felt super faint, I barely made it out of the shower and to the floor before passing out. A decline is not what we want but it's what I got.

To add to that I have severe migraines caused by the dysautonomia. My mom called my doctor for me last week because I was in too much pain to call myself. They made me an appointment for October 9th with my neurologist and said to go ahead and go to the urgent care and if there are any issues they can call him. This is the doctor that has stuck with me and fought for me from the beginning so I thought I was covered. Well, the urgent care doctor refused to give me anything besides anti-nausea medications and Benadryl so I had her call my doctor. She returned and to my shock he said no to any other medications. This was a huge blow. Not only is my body betraying me but now the one doctor that I thought had my back turned on me. I was devastated and cried for the whole time we were there. Pure defeat. It is hard to even explain the feeling, I felt like he has given up on me and I had/have no where else to turn. Even going to the ER would be pointless if I don't have a doctor to back me up.  I have not felt so alone and helpless in a very long time. I know it is not hopeless because Jesus but I sure felt helpless and I still do.

I also found out I have to have a ridiculously expensive amount of work done because apparently dysautonomia also affects your teeth. (I am pretty sure there is nothing that isn't affected by dysautonomia.) but this will be done in 3 costly appointments. I oddly enough have dental PTSD from when I was a child and I have survived one of those appointments but I had a massive panic attack, freaked out and it was just bad. Now I have 2 more sessions and I am already petrified of it.

 finances are incredibly overwhelming. I seriously cannot comprehend how people live off of social security. I am beyond blessed that my dad is willing to let me take financial loans from him to avoid interest and I could not be ANY MORE thankful that I have that because I know a lot of people don't but it is daunting because healthcare, dental care and vet care are insanely expensive and incredibly overwhelming. It's just hard to be an adult and want to pay your own bills or even just help with them and you can't.

so, in conclusion please pray for me and my doctor's appointment on the 9th. I'm very nervous about it because I'm not in a mental place to deal with rejection. Also, that my symptoms will stabilize and that I will be disciplined in saving as much as possible so I can contribute to bills. I know most I simply can't pay in full but I need to be more diligent  above saving as much of my social security as possible to at least help and that it will not overwhelm me so much. Pray that my dental appointments will be smoother and that they will be able to figure out what's happening with the cat and that it won't end up costing an arm and a leg. I do have an appointment with my trauma therapist the day before the doctors appointment so Lord willing she will be able to give me guidance on that appointment specifically and basically my whole life.

HEALING IS HARD/GRACE

For those of you who actually read this you may have noticed I have not made a post in way too long. I usually have no problem being vulnerable but lately that has been a different story. Sharing and facing my improvements has actually been really hard for me. This has been my life for 5ish years, I had accepted and come to terms with it but that came with a cost and a lot of loss, shame and guilt. For those who have an illness I hope you learn from my mistakes

 I had to accept not being able to drive and sold my car. I lost my job, I lost financial independence. Chronic illness  doesn't just disable your body it disables your mindset. Leading to poor choices in that regard because I get disability but it is not a lot and I got stuck in this phase of just doing things whenever I could because I didn't think I would get better so why not enjoy what I can. Wrong. I am in NO way asking for money I am just sharing some of the struggles people with debilitating illness deal with. This has left me with so much guilt and shame because the improvements in health made now see the hole I dug for myself and jumped in. I am so blessed to have my parents help me through everything but despite the warnings I am left with no savings and with physical healing comes reality that I am getting the life back that I thought would never happen and that reality snapped me out of that bad mindset really fast. Into the realization that driving again requires money, medical bills are a thing, and adulting after loosing my mind is going to be oh so challenging.

A healthy life is now a reality and to be honest it's daunting. I don't know if I will be able to work again but if so I can't just jump back into my career field, healthcare is demanding and with continued issues I just don't know if I could do it again. It's the only thing I ever wanted and still ever want to do so I am a little lost with that one. I feel lost in general just from loosing everything and not knowing what to do with myself at this point. I had accepted my life and now I am realizing I have to start all over again. I am thankful, oh so thankful but also it's new and new can come with a lot of struggles.

BUT GRACE GUYS, GRACE. God has given me so much of it, I am getting better and although it's scary for me I know God has it under control and He has a perfect plan. He is doing miracles and giving me my life back but throughout it he gave me grace in having parents that have been able to support me and forgive me for mistakes, financial donations for treatments, rides to ER's, infusions and urgent cares, an army of prayers and support and love. Life would be unbearable without the grace God gives out in abundance every single day through the hills and the valleys and even in sin and poor choices.

John 1:16 

Out of his fullness we have all received grace in place of grace already given.

With undeserved grace and forgiveness I will get through these unknowns on the other side because I know God has a solution before I had any problems, this life journey is a marathon, not a sprint and we learn lessons as we go and I can say I'm learning a lot of them but I am also being restored to life and I have to give it back to the one who gave it to me in the first place and trust in His promises of hope and a future. It may be slow but it's happening.

CRISIS

I am something. I don't even know what. I know everything is in God's hands  where it should be but it FEELS like my whole world just crashed in on me. My worst case scenario is actually playing out and I am crumbling. As of this morning I was fired from home health due to a medication discrepancy. Home IV's? gone. home nursing? gone. Port access outside of a hospital? gone. It's all gone. Every part of me wants to throw my hands up and give up but I am well aware that is not an option. I'm fighting every second of everyday and sometimes things like this happen and it boils over and I feel lost and 100 percent helpless to do anything but watch it fall apart in like slow motion. AGAIN. For the 5,000th time.

*the problem lies in a miscommunication on medications from  both parties*


Going forward,
1. I have to let God in and guide me as I try to find a new home health care agency that is willing to do things the way my doctor wants. I have been told the odds of finding that are slim to none.

2. I could go back to the clinic 3 days a week for 3-4 hour infusions but due to the nature of the problem my doctor and staff are completely not happy people about everything and just the thought of stepping foot in there makes me want to cry and run away.

3.Done. I'm just over it, everything. I have no desire to even deal with this at all.  Literally Jesus take the wheel here because I can't. I CAN'T.


4.My doctor could easily try to blame this on any number of my medications and take them away.

MIA

I think this is the longest I have gone without an update. I have LITERALLY been trying to type  this for WEEKS. The truth is I don't have words, I don't know how I feel or how I am. I have so much floating around in this little brain that I begin to feel like I can't take one more thing. I have to block everything out and avoid distractions  in order to focus on  seeking God as my source of the  mercy, love, truth, promises, strength, and hope that I need to keep fighting. It's too much to put any sliver of the strength God gave me into anything besides literally staying alive. Which is a full time gig! 

 I'm an advocate for letting yourself have a pity party with the knowledge that tomorrow you get up and keep fighting.  When you have a chronic illness a mental illness is bound to come along for the ride. The battle of mental health is seriously so much worse than the physical side. I have been feeling really down lately even though nothing drastic is happening and it is just another day in the life with POTS and pity parties happen all the time,  but this time right here is different, I'm struggling to get back up again.  

The mundane stuff that shouldn't and normally wouldn't bother me is bringing me down. It's hard because  I feel like I shouldn't complain about the little bumps in the road considering how far I have come and should instead be grateful for the drastic improvements god has given me over the past 5 years. but yet here I am in my despair pit feeling SO MUCH GUILT for having such a hard time even though nothing major is happening. I'm just discontent to be real and feeling guilty over it. Then I read this this morning

"Maybe you are having a really hard day or Maybe like I have a lot, a mundane hard day like this is feeling really hard and maybe its kind of over a small thing but it’s still hard. it’s ALL  valid. Life is hard. This is why we have Jesus. SO WE DON'T HAVE TO GIVE UP when it does get hard."

Mundane hard. That sums it up. Despite nothing major I am still having to fight with all of me to keep going. The fight doesn't take breaks, it's always there, maybe the severity will change from time to time but for now just my daily  POTS battle is feeling particularly hard. The day to day tasks feel harder, coping feels harder, all of it. The struggle to get back up is real and raw.BUT POSSIBLE so here we go.

2 Corinthians 1:7

And our hope for you is firm, because we know that just as you share in our sufferings, so also you share in our comfort.