advice

I have something on my mind lately that I would like to share and I mean everything I say in love.

When facing any kind of illness it is a mental and physical uphill battle. The worst thing that someone with POTS or any other illness really is to be told they are faking it, or using it to their advantage and don't really need help. Coming from experience being told any of that completely crushes and leaves you in a state of depression because nobody will believe you. People are really quick to say hey do this or try that or push through your symptoms and get moving when they have no ground to stand on. For those with pots it is not that easy. You can't push through your symptoms much because you end up doing more harm than good.

People with POTS are often told by peers or family that they just need to push through the pain and go out and live life just like they did before and everything will get better. I will say I have seen this happen but it was in someone with very mild POTS. People tend to think this syndrome is not as bad as we make it out to be and we don't need canes or wheelchairs and all they need to do is exercise and you will go into remission and they be cured. This is completely not true thee is no cure for POTS and dysautonomia, there are things you can do to help yourself such as exercise but that has to be done insanely slow because basically you are retraining your brain to adjust to temperatures, blood pressure changes, postural changes and any kind of movement. That takes time. If you aren't educated in the disease it is not okay to say what people need to do and how they SHOULD FEEL as if they are an expert and living with this disease in itself.

In conclusion just think before you speak. Saying any of the above is soul crushing and from experience can cause mental breakdowns because you feel alone and not believed. Show love, comfort, peace, understanding and just a listening ear instead of being quick to think you know the solution to it all. This is hard enough without the negative comments we all receive.

choice of trials

I get asked all the time how I do this everyday and my answer will always be that I don't have a choice. We don't get to pick what trials we face and when we face them. I did not choose to be 23 and on disability for a disease that has no cure and effects every little bit of my life. I can't change the fact that I have this but what I can control is how I respond to it. I can choose to give up on God (I tried but I learned really quickly that it was not a good idea) or I can use Him for my hope, strength, peace and understanding. No matter what the specific trial that you are facing is it always comes down to what you choose and how you respond. I just do one day at a time and try to keep my focus on God. Don't give up, everyone is here for a reason even though it is hard to see sometimes.

worn (run on sentence alert. Deal with it)

These last 2 weeks have taken everything out of me. My body is wearing down more and more everyday leaving me so weak and with an exhaustion that can't be explained. My life feels like it is falling apart one thing at a time especially now that I have these neurological symptoms that come from an unknown something, leaving me frustrated as I try to speak. Why on top of everything else does my cognitive ability have to fade?! I am tired, I want it to end; I want to work, walk in a store, go to the gym, and just participate in life. Despite this I will pull it together with Gods help and move forward.


My sense of hope and peace is that God is in control of this situation and He will give me exactly what I need whether physically or emotionally to push through another day. This will not be forever. If there is one thing I know, it's that God does not leave or forsake, He walks side by side with us in good times and bad. I may be fragile and broken right now but that could be where God wants me to be. There is a purpose for everything.

'There will be a day with no more tears, no more pain, and no more fears
There will be a day when the burdens of this place,
Will be no more, we'll see Jesus face to face
But until that day, we'll hold on to you always" --Jeremy camp


"And I'm falling apart As I carry my heart to Your throne
I am completely surrendering Finally giving You everything
You're my redeemer, I run to the cross
Because You are more than enough
Lord complete me
Cause I'm Yours completely" --among the thirsty


"Every time that you wake up breathing
Every night when you close your eyes
Everyday that your heart keeps beating
There's purpose for your life
So don't give up
Don't lay down
Just hold on
Don't quit now
Every breath that you take has meaning
You are here for a reason"-ashes remain

hospitals and unpredictabe days

spending 4 nights in the hospital is plenty for me! I am so glad to be home. My nervous system went psychotic leaving me with urinary retention and let me just say that is a whole new level of uncomfortable. I have never been so happy to pee in my life! I am glad that God listened to my plethora of prayers involving pee and He took that burden from me.


I have had a migraine ever since Thursday as well and I was put on IV steroids, pain meds, and a few other IV meds to try to get it under control, I am now at a level 5 of pain vs. a level 7 like it has been so that is an answer to prayer.

The worst part of all of this is how unpredictable it is. I never know what and when something in my body will just fail so, it is like always walking on eggshells, and waiting for the next ball to drop. I am blessed to have such a support system in my life, I don't know where I would be without all of you.

Test Results

I know a lot of people have been asking about my test results and all I have heard about is the MRI. EEG and EKG are pending but I will hopefully find out today or tomorrow. The MRI came back clear (Thank God) but that's not the main tests that they wanted for my symptoms because they could be seizure activity and/or a heart related long QT interval. A long QT interval is basically my heart takes pauses, I have had this 3 times throughout my life thus far so who knows what my body is doing right now but I am still dealing with the involuntary limb and face movements and twitches, voice slurring, saying the wrong words, collapsing and dropping things.

I will let everyone know as soon as I know anything. If all tests are normal than they are going to look into my pharmacy of heart and BP meds to look for a side effect issues.

gravel road

We all end up on a dark road at some point in life where you can't see more than a few feet in front of you, there is no turning back so you go, one step at a time knowing at any minute something could go wrong. You can barely see directly in front of you let alone what is at the very end. Fear begins to creep in as you walk, all the unknowns are flooding into your brain like wildfire when all of a sudden a trial hits you dead on. You know this is only the beginning and more trials are to come and you search for hope and peace when you see a hand reach out to walk with you until the end and guide you and comfort you. The road seems suddenly less scary, dark, and cold. You have help.

We all face hardships and trials of various severity that are real, scary, and unknown. I really struggle with the unknown on "my road." I just want to know what is in front of me and at the end, I feel so lost as to what my future looks like because right now I can't even go there. Will I be in a semi-functional state forever? Will I get better and have to make decisions about jobs again? so much is unknown and I am learning that God has his hands reached out for us, to guide and walk with us as we each walk our roads and face the gravel as it comes. I really don't like my road right now but there is no turning back, I have to press on all while holding the hand of God and just keep on walking.


Isaiah 41:10-
fear not, for I am with you;
be not dismayed, for I am your God;
I will strengthen you, I will help you,
I will uphold you with my righteous right hand.

tests

Hospitals are not known for having timely services which I expect from an ER but for outpatient testing it should be a lot better. SHOULD. Thank you God for not letting me have anger management issues because you might have seen me on the news. First, I had to register which takes about 10 minutes then I was sent over to cardiology where we sat for an HOUR and a half before I was called back for the EEG thus making me super agitated.


Once called, the slowest and most unprofessional tech I have ever met proceeds to draw on me with markers and all kinds of fun for another HOUR and a half. (should have been 30 minutes) Ahem. Making me so late to the MRI that they almost closed up by the time I arrived. I am beginning to pray for the rapture at this point (c'mon God don't you think we are killing each other too much?! Let's call it a day and go prance in heaven. Pleaseeee)

MRI begins and sets my nervous system off making me twitchy and have a migraine weeee. Then we got to leave. finally. We ended up being there from 12:30-5:00. Thank God for my dad and his willingness to sit for hours to let me get everything done! I probably won't know anything until Monday or Tuesday and no lives were hurt in the process (barely)