Field Trips and realities

sometimes I forget that I'm sick. My dad took me on a field trip on Saturday (Some people are crazy and willing to take me in public even with my declining social skills.) we went to pere Marquette and stopped at a lookout, we get out of the car and went to walk and then my dad and I just look at each other and he was like oh you can't do the stairs can you? nope. So he went and took a few pics and then we spent the rest of the time driving through the park to look at the beautiful leaves. It was amazing to be out in God's creation vs. my bed! Yes, it makes me crash later but sometimes you have to choose to get out and do things even though a crash will follow. It is good for the soul.

I still just can't wrap my head around the fact that my life has changed this much and just walking up stairs leaves me ready to collapse. It was such a sudden change that I don't think I really absorbed it. Now I get frequent disappointing reality checks such as the one above. Prior to my seizure I did not even know that conditions of the nervous system exist in the first place and the toll they take on every part of your body; Everything is affected. It is a brutal and unpredictable disorder that there is no cure for. Treatments? yes but no cure. God is all powerful, I will never say there is no hope for POTS and an unknown diagnosis because there is always hope in Him. Without Him I don't know how people get through this. The peace and comfort that Jesus gives keeps me going. If I didn't have that my life would seem pointless and my sufferings would be for nothing.


Job 11:18
You will be secure, because there is hope; you will look about you and take your rest in safety.

Job 36:15
But those who suffer he delivers in their suffering; he speaks to them in their affliction.

Jeremiah 15:15
Lord, you understand; remember me and care for me. Avenge me on my persecutors. You are long-suffering—do not take me away; think of how I suffer reproach for your sake

Psalm 4:8
In peace I will lie down and sleep, for you alone, Lord, make me dwell in safety

Psalm 62:5
Yes, my soul, find rest in God; my hope comes from him.

Without all these promises and the best kind of support from Jesus. I would be very lost and hopeless. Hopeless is such a strong emotion to feel and it slowly eats at your heart and changes the person you were meant to be. In God there is an infinite amount of hope. More than you would ever imagine you just have to seek it.

faithful

I have never been good in things that have a waiting time.I have been very nervous and anxious and everything under the sun when I saw the POTS as the result of the tilt table. My heart had dropped thinking here we go again, he is going to tell me it is only that and my blood pressure drops just come along with it and we can't do anything about it. Obviously, I have been told a lot in my life that things are all in my head and I was terrified that was happening again. God never gives up on us and wants us to hand over this "control" that we think we have. I like control. God reminded me to just trust despite what you think is going to happen and the following message took my worry away and reminded me how important it is to give things over to God. This is the response from my doctor that I have been waiting for and freaking out over:

'We have not yet ruled out AAG. Lets see what the antibody shows.
It cannot just be POTS with low BP, despite the tilt results."

Basically, I do have POTS but I have something else as well that is making my BP drop. That is what we are testing for. So, yes I have 2 syndromes because just having one is not allowed. God gave me this peace despite my previous lack of trust and for that I am so thankful.

Confusion

Apparently my neurologist is out of the office till Monday but he still answers emails. I asked for my tilt table results and his response has me all kinds of confused and discouraged. "tilt confirms POTS" ummmmm I have like 5 papers from you that say it cant be due to my blood pressures. Like this: "I can not make a diagnosis of POTS in the setting of OH" (low bp) and this "The original Tilt test showed hypotension and tachycardia, not clearly POTS".......I sent him an email about all this and probably won't hear till tomorrow. This left me feeling so worn and defeated.

There is a possibility that he is not engaged in what he is doing and wasn't looking at my chart because he is out of the office. he doesn't have to be so focused. Please pray for me for peace until I hear back because as of now it is going to be a tough night. Pray for the right answer whatever that may be and acceptance on my part.

God's funny

God is trying to teach me to be patient and rely on Him; knowing He is in control. I have been waiting for my package from Athena and I got a call today saying that they will schedule me for next week in the hopes that the package arrives. I got so frustrated because this is for the antibody test and that's the most important thing. In my discouragement God is amazing and the package arrived right after all this and I got squeezed in for tomorrow instead. They draw blood at home and then we ship it and it takes from 3-5 weeks to get the answers.

reality checks when you don't want them

Last week and verging into this week all of my symptoms have hit full force. I try to just go about my day and go with the motions but today I was given a reality check that I don't want to hear. I was at my pulmonologist today and we were discussing my quality of life (really bad)and disability things. He said that there is almost no way they can deny it because "there is not a job in the world where you can just keep passing out" It's true and I am grateful for disability but it also hit home hearing I won't be back at work for a long time, if ever, because even with treatment they only expect you to function at 50%.

He asked me if I am driving I said no and then he asks if I am still living at home and when I answered both questions it was like someone hit me with a brick. The look on his face was a look of sadness that I am having to go backwards in life. He then just said "oh man but maybe if you could get disability you could live on your own" It got quiet for a second and he proceeded to realize that I wont be able to live alone because I could pass out and injure myself. He is a great doctor and seeing his facial expressions for my life circumstances made me realize how different my entire life will be from this point on.

My illness is not curable and I will be struggling with it my entire life. So hard to face and comprehend, I don't know what God's plan is in all of this but I know He has one. I am just feeling defeated and tired of living the way I have to live. I don't know why God allowed me to have this trial that won't end until Jesus does a miracle or I am in heaven. I don't have a single clue what my future will look like, I just pray it changes because having to live the way I am now isn't living it is more like existing. I need strength right now because honestly I feel defeated, lost, and worn down. I just want to know if this will ever end here on this earth.

Having a chronic illness brings you down to some dark places that linger for awhile and we need the strength only God can provide to keep on going even when our hearts are heavy and our mind is done.

Athena

Today I have felt so sick and haven't really moved all day mostly do to my blood pressures so I am anxious to keep moving so I share this request with you:
Please pray that my blood work kit is delivered tomorrow. It is the all important antibody test kit. There is a lab called Athena that sends someone to your house to draw the blood and then you are responsible for packing and shipping it to the lab itself. (super weird process, I know)blood can't be drawn without the kit so pray it comes soon. I should have the results of my neurological tilt table on Tuesday.

strength

Legit vulnerable moment: Today has been defeating and particularly hard. honestly, I am broken down and the daily struggle of getting out of bed seems out of reach some days.

I get the "you are so strong" comment a lot but I am so far from it but God is strong. There are a lot of raw moments where I sit in tears because of what my life has become and what is yet to come (the unknown). Today has been hard; filled with muscle spasms at 4am, constant nausea that NEVER leaves, heart racing,and every time I stand up I can feel the blood just draining from my brain.

My cheerful attitude that I try so hard to portray is taking a beating. The waiting on test results and possible treatments is eating at my heart and mind and leaves me in a state that most of my life has been composed of, waiting. Sometimes you have to be vulnerable so people know what to pray for.

From the outside it may look like I have it together but I don't. Yes, I still love Jesus through this and He is the only one pulling me through but I would be lying if I said I am spending time with God even though I have infinite amounts of time to do so. I would be lying to say things between God and I are good. That does not mean He isn't there He is just waiting for me to fully rely on Him and I am not there yet due to sin.

There is a lot going on with my health right now...two doctors debating on what my diagnosis actually is and tests to come of course. So that's cool. Sometimes you have to be vulnerable so people know what to pray for and to break the whole Christian pleasantries of "life is great all the time" because...Jesus. It's not always great, we all have our struggles. Today has been especially rough. I woke up at 4:00 am with severe muscle spasms and bouts of nausea. I was basically walking like a nauseated penguin which I can only imagine how attractive that was.(remind me to youtube that and see if it has occurred) I was able to get a couple more hours of sleep before waking up with so much nausea and I have had to have escorts just to go the bathroom due to weakness and the threat of passing out since this brain blood loss is causing chaos.

Yes, I have my savior by my side but life can still be hard. I opened up some of my deepest thoughts and allowed myself to be vulnerable to you all instead of hiding my "bad/hard" thoughts to just fester because you never know what you say can impact others and I have been blessed to read other blogs that sound bad but are also a reminder and an encouragement.

waitingggg foreverrrr

I am feeling completely defeated right now, like I have nothing left to fight mentally. My emotional self is just shutting down into one huge confusing rollercoaster. There are always ups and downs but now there is different paths that showed up. After being treated for POTS for 7 months with all of the top treatments including 1 liter IV saline a DAY, medications, and using the Levine program to condition my heart, I did not get better like I should. Yes, my heart rate does not go as crazy anymore and my shortness of breathe is a little better but I have a buttload of symptoms that didn't react to the treatment at all.

After seeing this new neurologist on Tuesday I might have some other answers. Not the kind of answers anyone wants but you have to do what you have to do. He said that I don't have POTS because if I did my BP wouldn't be constantly low and have such severe drops. POTS BP issues aren't quite like that.
I also have a fixed and dilated left pupil, nausea, vomiting, involuntary movements, don't sweat anymore, brain fog, body pain, and dry mouth and eyes. There is more but I refuse to type it :)


The diagnosis I received(if the tests come back positive) is autoimmune autonomic ganglionapathy. Say that 5 times fast, really I would be impressed if you could say it once. Anyways, it's an immune disorder where my body is attacking itself. It is the reason for my eye issues (it is beginning to attack my brain fibers) and the reason for my tachycardia by attacking my heart and as it spreads and more and more of the antibody builds up the worse things get and then more organs become affected.

The treatment for this is immune suppressants, plasma exchange (looks kind of like dialysis), other meds and absolutely worse case scenario would be chemotherapy. This illness has NOT been confirmed yet. I have tests to do that could show something totally different so I am not set on this, we just don't know right now. (story of my life)

This is my current, scary, situation. To quote my doctor "The story of acute onset tachycardia and orthostatic hypotension (low BP) associated with seizure following respiratory illness, and recent 20 pound weight loss as the result of an intense physical conditioning program is suggestive of a primary autonomic disorder. I can not make a diagnosis of POTS in the setting of OH (low BP). The pupillary delay is highly suggestive of autoimmune autonomic ganglionopathy.

IF AAG is found by antibody testing, consider cellcept and prednisone, Plex vs IVIG.

POTS vs. NOT

I have been told that I do not have POTS but something else that is in testing and here is why:

1. some doctors disagree and go back and forth about it but I was told that my major BP drops mean that I do not have POTS because all that diagnosis is and means is in different positions I get tachycardia. I do have that but I also have a dilated and fixed pupil, major orthostatic hypotension (low BP), nausea and vomiting, migraines, and abdominal pain. Even on every possible treatment regimen for POTS for 8 MONTHS the only thing that got better was my heart rate. I did and am doing the Levine program and I attribute it to the success of getting my heart rate controlled but that is all it did. If I had POTS months of getting a liter of fluid every day, being on ALL possible meds for POTS, and doing the conditioning process should have done more than just getting my pulse controlled, I should be feeling better to some degree.

2. I am not saying I have AAG because I don't know what I have but the reality is that it is time to start looking for something other than POTS. Not just an underlining cause but something new altogether. My symptoms just don't fit in the little POTS box or I would be much better.

3.I know people are trying to help but I don't want your opinions on what it is or is not since nobody is a doctor. I don't mind advice within limits and I definitely don't mind prayers but I don't want a people provided "answer for everything" At this point I would be thrilled if it was "just POTS" and I could continue doing what I am doing and get better, that'd be great but after 8 months, I don't think it is going to happen. Everybody has a solution for me in their head and if I just "do this" it will all be peachy. My life has never been normal and I go against the normal in every way possible so it is not a simple situation.

4. All I want is your prayers for the correct diagnosis and treatment plan that can make my quality of life improve. I appreciate everyone's support and love as I deal with whatever God does in my life and try to move forward and prayerfully in the right direction.