Tag: chronically ill

Appeals and Faith

Post 2 of until I get my stem cell transplant

Song of the day: Even If – MercyMe

Verse of the day: […] and who knows whether you have not come to the kingdom for such a time as this”

Esther 4:14

If it is not already known, I am a Christian. Meaning I have a personal relationship with God, Jesus is my Lord and savoir, and I have the Holy Spirit living in me. I don’t like to say I am one group of Christianity or another, as I know that regardless Christianity is a relationship between yourself and God. The Bible is the word and the word is Jesus.

This morning I was reading out of the book of Esther. Many people know the story of Esther vaguely Christian or not. But for those who do not – here’s my quick summary:

There is a King Ahasuerus who rules over this huge Persian area decides that he wants to throw a celebration lasting half a year. At the end of the celebrations he commands the Queen Vashti to come to be shown off to the province leaders. She refuses and King Ahasuerus throws a hissy fit – then his court advises that he de-thrown Queen Vashti and find a virgin, “someone better” to be the queen. The king, in his anger, listens to his advisory along with decreeing that all men are the masters of their own households.

The King also declares that all provinces send their most beautiful virgins so that he may choose a new queen. Enter Esther here and the uncle who raised her Mordecai; both of whom are Jewish. Mordecai tells Esther to hide the fact that she is Jewish for her own safety. She is chosen to be the next queen because the King likes her so much. Mordecai stays out of the Kingdom gates and is able to save the King overhearing a coup by the men of the court; message delivered via Esther.

Fast forward, Harman – one of the king’s close advisers – wants to hang Mordecai. They will not bow before the king and his royal subjects. He wants to hang Mordecai and has a decree that all Jewish people be slaughtered. Esther risks her life and tells the King she is Jewish and asks for an appeal to the law. The King is appalled by Harman’s doing but cannot revoke his decree because of some weird law back then; but he could decree another law that the Jewish people may fight back the genocide/purge Harman’s law. This ends up saving the Jewish people in all of the provinces.

Now, I left out a lot here and there’s definitely me condensing the story. If you want to read the full story it is only nine short chapters in the old testament. So why is this story important?

I feel as though a lot of people take this story to say “be like Esther” but that is not the case. People in the bible are not there to make us want to be like them, they are there to point to Jesus and God. Something Jesus is trying to say here is that even in extreme circumstance, there is only one true God, follow him and stand strong in your faith in him. Maybe you were placed where you are now for a moment like this.

So reading this and seeing the bravery, faith, and high stakes of dying, I can’t help but be reminded that even in the worst of times, God can use you. Jesus will never lead you wrong and is sovereign over all things. The tricky part is having that “faith of a mustard seed” type of trust in him.

This is where I struggle sometimes, because I have personally been afflicted with a mast cell disease. Insurance finally denied my stem cell transplant a couple weeks back. I am now sending off letters to appeal to them; I will likely start getting sicker and dying soon if I don’t get this covered. Knowing this, in the iconic words of Esther:

[…] If I perish, I perish

Esther 4:16

I have contentment in my heart about the appeal to insurance, but that doesn’t mean I am not scared during this process. I would be the first for mast cell activation to get a stem cell transplant. There are a handful of people that would benefit or even have their life saved if I am able to be the “lab rat” so to speak and survive this. Given I honestly should be dead right now (heart failure, chronic kidney disease, RA/lupus-like/auto-inflamatory/immune arthritis, adrenal failure, anaphylaxis more times than one can count, lung failure, high blood pressure, beating sepsis twice, bone marrow failure and mast cell disease to name a few). The hospital is almost like my second home. I can’t eat without risking the use of an epipen. I need a new immune system. I am not finished yet. I relate to this verse so differently now.

If I perish, I perish.

but also; maybe I was placed here for such a time as this. I get the stem cell somehow, and it not only saves my life; but others who suffer severely. I can proudly and boldly state that my healing is from the Lord. And if I die, my story still preaches and glorifies God’s name for what can be learned from my illness. This is my testimony.

A doctor’s appointment guide

a guide to help take the stress away from doctors appointments and allow for optimal care

Whether you are chronically ill and practically a professional patient, or simply see your PCP every so often or specialist for that one health issue; preparing to get the most out of your appointment can be daunting. Often enough, patients usually find themselves leaving appointments with more forgotten questions than answers to what they truly need. Here are some of my personal tips to mitigate that.

Pre-appointment preparation

  • verify time and date of your appointment – some doctors will want you there 15-30 minutes before the appointment actually is. Typically this is to fill out paperwork and account for the doctors running behind schedule. I always personally aim to be able 10-15 minutes early unless asked to come earlier or specifically on time.
  • Account for traffic/transportation at the time of day of your appointment – is your appointment at 8:00 am in the morning? Is it close or do you have to battle traffic to get there? Is it during rush hour? How are you getting there? All questions you should answer before either scheduling the appointment or the day before the appointment.
  • Expect to fill out generalized paperwork. – this typically includes insurance information, a review of systems, your PCP information if seeing a specialist, main complaints/why you are at the appointment in the first place, pharmacy information, current medication list, and current symptoms. Make sure you have all of this information on hand and ready.
  • Water – always bring water, regardless of where you are going
  • a notebook, pen/pencil, and any current labs if the specific doctor has not seen them, did not order them, and the labs are related to the specialty. The notebook and pen are to record important information, have questions written down to ask, and general updates for the practitioner pertaining your condition.
  • Top three issues – this ensures that you stay on track with your practitioner, and that you remember to ask and get answers for all your symptoms and questions. This focuses the appointment overall.
  • a mask, especially if immunocompromised

During the appointment

  • start with health updates – this could be improvements, drugs that are helping, overall feelings, things that have not been working, concerns.
  • be HONEST – if things are getting worse or you have a concern, EXPRESS THIS. “I’m okay” or “I’m fine” are NOT good enough answers if you are having symptoms and things that are problematic.
  • focus the appointment on your top three list – start with the most pressing issue, this should be the number one reason you are there.
  • advocate advocate ADVOCATE – you are the ONLY person that knows what your body feels like. You are the expert on your own body. If something feels very wrong, PRESS ON THIS ISSUE.
  • take notes on any med changes, medical advice, or new diagnosis – hence forth bringing a journal.
  • if possible make sure to get a visit summary and doctors notes – this should go into a binder of visit summaries, or doctors notes, so that you can refer to them if need be in the future.
  • ask questions – doctors speak medicine and have to translate to what they call “living room language” for the general population. This isn’t because the general population is dumb or stupid or beneath the level of intellect of a doctor. It is because we haven’t dedicated years of our lives to learning this language and then practicing it. So if something is not understood, ask them to explain again differently. ASK questions about the diagnosis, the medications, the prognosis. You are literally paying this person to give you the best medical advice possible, this includes explaining said advice and answering questions about it in a way YOU understand.
  • If you have done research into something you think you might have, don’t be afraid to ask about it – a lot of diseases, especially autoimmune, take a long time to diagnosis. We are talking 6+ years on average. If the doctor refuses to look into it and you still feel strongly that there is something there, call them out on it. How? ask them to state in his/her note that they are choosing not to look into the possibility of a certain illness or run a certain panel of tests. More often than not they will change their mind quickly and just run the test.
  • At the end of the appointment – so long as the doctor isn’t a total jerk to you but even so, thank them for their time. Thank them for seeing you.

Post appointment

  • Review the visit summary and doctors notes on your appointment
  • pick up or drop off any prescription medications
  • research any new diagnosis
  • get labs done if labs were ordered