I would really be ok with this day ending right now. Sometimes I just feel so lost, discouraged, and helpless. My doctors aren't really sure what to do with me, I am not getting any energy back from my virus's and pulmonary embolism thus leaving me bed bound most of the time. I have a cough that makes it hard to sleep and the doctors are clueless as to why, they are also clueless as to why my EKG changed and what it means so they just send me to other doctors to get me off their hands. I have had heart palpitations and extreme pulse levels (160) when I walk up stairs lately and my cardiologist says it really needs to be dealt with by an electrophysiologist. Mine moved and I can't see the new one until the 24th. My nurse was here changing my port needle and she asked me who we would call about it all and I don't even know. I have a ton of specialists but the one who could really help is out of town until next week sooo basically no one would know what to do since it is so complex.
I am feeling so lost and discouraged today, I don't want to live like this anymore but that's not my call. There is a reason the call-maker has me battling this so now I am going back to head knowledge. God didn't allow this in vain, He didn't leave me, He has a plan, He is my creator, He loves me, all this I know and I am clinging to it because my heart is not in the same place. I just have to tell myself all of the truths all the time cause Satan comes up with some crazy stuff.
God's free hope in the chaos of life's trials
Tuesday, November 10, 2015
Tuesday, November 3, 2015
no words for a title
There is nothing quite like waking up at 6:15 and feeling horrible for the 3rd time in a row. Well, let me try to explain it to you.
1. you instantly wish the rapture would come right now
2. you determine what symptoms you will be dealing with
3. you realize again how your life actually is
4. you shut down and pretend that everything is normal
5. but it's not
6. you take drugs that most likely won't help
7. you realize that bathrooms exists for a reason
8. you become old and use your walker to get back and forth from said bathroom that exists.
9. you collapse with pure exhaustion
10. you realize that the simplest tasks are SO hard
11. you realize you have bid farewell to your old life for almost 2 years
12. you realize how long that is to fight
13. you want to give up
14. you have a mental breakdown because there is no cure
15. you beg God to let you go back to sleep since that is your "break"
16. you acknowledge that you have been basically completely bed bound
17. mental breakdown #2 cause you "could" be this sick for all of your time on earth
18. you wish for the whole rapture thing again
19. you long to be in the real home God has destined for you if you believe
20. you daydream about how great it will be to say goodbye to your diseases that have no cure and be made whole again in the best place you can ever imagine times 1,000 WITH the one who saved you.
21. you realize whether you like it or not God is keeping you around on this earth for His glory
22. Sometimes you pull yourself together and other times you give in knowing its not safe to even get out of bed
23. you proceed to stare at the ceiling feeling sick but not knowing what to do with yourself, ceilings are pretty cool, just in case you didn't know.
24. lay in bed forever until that bathroom calls you again and you become old again. Maybe do some coloring but mostly lying like a veggie
25. discouraged
26. but Jesus
27. repeat
All in the span of 2 hours. It's fun.
1. you instantly wish the rapture would come right now
2. you determine what symptoms you will be dealing with
3. you realize again how your life actually is
4. you shut down and pretend that everything is normal
5. but it's not
6. you take drugs that most likely won't help
7. you realize that bathrooms exists for a reason
8. you become old and use your walker to get back and forth from said bathroom that exists.
9. you collapse with pure exhaustion
10. you realize that the simplest tasks are SO hard
11. you realize you have bid farewell to your old life for almost 2 years
12. you realize how long that is to fight
13. you want to give up
14. you have a mental breakdown because there is no cure
15. you beg God to let you go back to sleep since that is your "break"
16. you acknowledge that you have been basically completely bed bound
17. mental breakdown #2 cause you "could" be this sick for all of your time on earth
18. you wish for the whole rapture thing again
19. you long to be in the real home God has destined for you if you believe
20. you daydream about how great it will be to say goodbye to your diseases that have no cure and be made whole again in the best place you can ever imagine times 1,000 WITH the one who saved you.
21. you realize whether you like it or not God is keeping you around on this earth for His glory
22. Sometimes you pull yourself together and other times you give in knowing its not safe to even get out of bed
23. you proceed to stare at the ceiling feeling sick but not knowing what to do with yourself, ceilings are pretty cool, just in case you didn't know.
24. lay in bed forever until that bathroom calls you again and you become old again. Maybe do some coloring but mostly lying like a veggie
25. discouraged
26. but Jesus
27. repeat
All in the span of 2 hours. It's fun.
Monday, October 26, 2015
life is hard but blessings abound
It just sunk in today that what I had could have killed me. This might be number 20 times that God has chosen not to bring me home yet. I get close and God says nope not yet, I am not done with you. Countless times. I don't know what His plan is for me and why this had to be apart of it. Close to My whole life I have had to rely on God to save me from situations that look like I might go to Jesus but He is all powerful and pulled me through every time.
I feel God's blessings for allowing me to stay on this earth and saving me. I was just reminded of this as I had a pulmonary embolism which can and more often than not is fatal but God allowed it to be in my lower lung where less damage occurs. Yes, I was very sick with low oxygen and blood pressures but you know what? He saved me again. I have had a lot of complications but none of them were as serious as they could have been and usually are but Once again God.
Being alive is a blessing we take for granted but nobody is guaranteed anything. This current journey is way harder than I let on. I try to be positive when inside I am crumbling. Right now I am gathering the crumbles and preparing for my next fight. life looks a thousand times different than it used to and I am still trying to accept that but I know God allowed it so HE HAS A PLAN. This would be so much worse if we suffered in vain and that this earth is all there is. Devastating. Thanks to the good Lord, one day all afflictions will be gone and I will be in my forever home. Getting to see why everything happened and how everything connects, I know it will all make sense but it sure doesn't right now!
I'm going to be vulnerable in saying mentally and emotionally I am struggling to accept and cope that this is my life and most of the things I used to do for fun have been stripped away. Fun is different now, I can have fun but it's not true fun because there is always a symptom going on that I am pushing through and trying to hide. Having said all that guys I AM ALIVE and that is hard at times because of medical crisis but I am here and Jesus's plan is still rolling right along and He is there to comfort me on it as we go.
I feel God's blessings for allowing me to stay on this earth and saving me. I was just reminded of this as I had a pulmonary embolism which can and more often than not is fatal but God allowed it to be in my lower lung where less damage occurs. Yes, I was very sick with low oxygen and blood pressures but you know what? He saved me again. I have had a lot of complications but none of them were as serious as they could have been and usually are but Once again God.
Being alive is a blessing we take for granted but nobody is guaranteed anything. This current journey is way harder than I let on. I try to be positive when inside I am crumbling. Right now I am gathering the crumbles and preparing for my next fight. life looks a thousand times different than it used to and I am still trying to accept that but I know God allowed it so HE HAS A PLAN. This would be so much worse if we suffered in vain and that this earth is all there is. Devastating. Thanks to the good Lord, one day all afflictions will be gone and I will be in my forever home. Getting to see why everything happened and how everything connects, I know it will all make sense but it sure doesn't right now!
I'm going to be vulnerable in saying mentally and emotionally I am struggling to accept and cope that this is my life and most of the things I used to do for fun have been stripped away. Fun is different now, I can have fun but it's not true fun because there is always a symptom going on that I am pushing through and trying to hide. Having said all that guys I AM ALIVE and that is hard at times because of medical crisis but I am here and Jesus's plan is still rolling right along and He is there to comfort me on it as we go.
Saturday, October 24, 2015
the rundown
so, for those of you who are curious here is the results of my hospital stay. I will do my best to not "medicalize" (new word) it so all can understand.
1. my blood levels showed heart damage and clotting activity despite being on blood thinners
2. Dr. major ego said and I quote "none of this makes any sense and it is his job to find something that can kill me but he doesn't have the time to figure it all out, that's the job for the doctors upstairs"
3. Given your cough and your dependence on oxygen we are going to do a CT scan to look for clots in your lungs
4. CT done.
5. 2 clots found in lower lobe
6. the heart damage could be a heart attack not originating from the heart quote: "I just don't know"
7. more idiots come and say scary and contradicting things such as blood thinner failure and no matter what I will have to be on thinners for the rest of my life
8. my hematologist comes and says it is his job now to un-do and un-say everything they said. The clots caused the fever and low oxygen and put extra work on the heart making the blood test show heart damage even though that is not exactly what is happening and there is for sure NO heart attack. I am not in blood thinner failure we just couldn't keep the dose regulated enough to prevent clots thus I got them and now Coumadin is not the right med for me so we are switching to an injectable once a day that does not have to be regulated, I can eat whatever I want and take whatever medications I want.
9.He said I could go home over the weekend and here I am and I love him. One of the best doctors ever. I love how he has no fear of coming and proving to their face everything that said that was wrong. The best. So a shot a day and bam all is well.
Started out super scary with really low oxygen levels and ended fantastic. ohhhh life.
1. my blood levels showed heart damage and clotting activity despite being on blood thinners
2. Dr. major ego said and I quote "none of this makes any sense and it is his job to find something that can kill me but he doesn't have the time to figure it all out, that's the job for the doctors upstairs"
3. Given your cough and your dependence on oxygen we are going to do a CT scan to look for clots in your lungs
4. CT done.
5. 2 clots found in lower lobe
6. the heart damage could be a heart attack not originating from the heart quote: "I just don't know"
7. more idiots come and say scary and contradicting things such as blood thinner failure and no matter what I will have to be on thinners for the rest of my life
8. my hematologist comes and says it is his job now to un-do and un-say everything they said. The clots caused the fever and low oxygen and put extra work on the heart making the blood test show heart damage even though that is not exactly what is happening and there is for sure NO heart attack. I am not in blood thinner failure we just couldn't keep the dose regulated enough to prevent clots thus I got them and now Coumadin is not the right med for me so we are switching to an injectable once a day that does not have to be regulated, I can eat whatever I want and take whatever medications I want.
9.He said I could go home over the weekend and here I am and I love him. One of the best doctors ever. I love how he has no fear of coming and proving to their face everything that said that was wrong. The best. So a shot a day and bam all is well.
Started out super scary with really low oxygen levels and ended fantastic. ohhhh life.
Tuesday, October 20, 2015
give up
Sometimes I have a really hard time not giving up as all the balls are dropping around me. I feel defeated and I just don't want to deal with this anymore. A syndrome with no cure and a billion complications has me feeling like it's all too much, wasn't what I went through in the past enough? I'm clinging to the fact that we never suffer in vain and my brain knowledge of my savior's love. Regardless, it will be all be gone one day whether in this life or not. That is such a sweet thought. I think when you face so many trials on this earth, heaven gets a whole new meaning. The incurable will be gone, dysautonomia and all of it's complications will be GONE. It's hard to imagine that I could have this forever but I know that there is a reason. A song just came on and these lyrics remind me that I can't give up "That's the only way to go, fighting the good fight until the good Lord brings you home."
Home. Man, am I ready for home but I have to fight until the Lord calls me home, giving up isn't an option, He isn't done with me yet even though I am crumbled into a thousand pieces, He will use every one of them.
Home. Man, am I ready for home but I have to fight until the Lord calls me home, giving up isn't an option, He isn't done with me yet even though I am crumbled into a thousand pieces, He will use every one of them.
Tuesday, October 6, 2015
fight
Man, fighting my own nervous system is not an easy task. I have to change what my daily life looks like because I have no cure and I simply cannot live like I have been for the rest of my life. Not an option. I had given up without realizing it but God has a way of making us face our reality. It was just like a sudden epiphany that THIS is my life, without a miracle it is not going to all of a sudden change so I have to learn a new way to live WITH POTS and not just be POTS. I have to fight my fatigue and dizziness and get out of bed and live, not just exist. God is enabling me to do this but it is so hard. Basically what I have to do is do as much as I can outside of my bed every day while fighting against the crash in order to re-condition my body. It is a very very very slow process but it works. Of course, I have to be smart about it. I have to try to learn when I should not do anything to avoid anything bad happening like passing out. I still have my days I do nothing but I am slowly incorporating reality into my existence. It is so hard to feel horrible during the crash but getting up and fighting against it anyway. Please pray for me in this. I now I can do it and I have set my mind to it and I know God is leading me but it is still not going to be easy.
With each crash my body tries to re-condition itself and over time that works it is just slow and exhausting and taking EVERYTHING out of me. Conditioning is my new way of life instead of laying in my bed and I have a lot of hope and I feel like I actually can have a future as long as I keep fighting. Pray for me to be able to listen to my body and know when to push myself and when to give it a break. That might be one of the hardest parts because the whole point is pushing my bodies limits but I also have to be super careful because I can also make it worse if I try to re-condition too fast and hard and that is not what I am aiming for. I will do this. I need everyone's thoughts and prayers though to get through this. I have been going out places and as much as my body will let me and just trying to do more daily activities. Thanks for your support, this will be a long journey but I made it through my past by the grace of God and this will be no different.
With each crash my body tries to re-condition itself and over time that works it is just slow and exhausting and taking EVERYTHING out of me. Conditioning is my new way of life instead of laying in my bed and I have a lot of hope and I feel like I actually can have a future as long as I keep fighting. Pray for me to be able to listen to my body and know when to push myself and when to give it a break. That might be one of the hardest parts because the whole point is pushing my bodies limits but I also have to be super careful because I can also make it worse if I try to re-condition too fast and hard and that is not what I am aiming for. I will do this. I need everyone's thoughts and prayers though to get through this. I have been going out places and as much as my body will let me and just trying to do more daily activities. Thanks for your support, this will be a long journey but I made it through my past by the grace of God and this will be no different.
Monday, September 28, 2015
The struggle is real. What my life looks like.
That one moment when you wake up at 3am feeling like death all because you did something the day before. Yeah, that is my life. Right now I am feeling the struggle. I want to live life, not just exist there I mean c'mon I sat on a couch doing a bible study and went to dinner and now I feel horrible and probably will feel that way for a couple of days. This is when the tears come as reality sets in again. This struggle is real, hard and scary. I don't know what God's plan is for me in the long term but for now I am trying to keep it together. It may appear that I am doing so on the outside but in reality I am crushing and having to bring my heart that is in a million pieces to the throne of God because that is all I have left. I am beyond done with being sick and I am fearful of what the rest of my life is going to look like and whether any of my hopes and dreams will ever happen.
It is my reality and it sucks. Every dream and wish I have feels like it's falling apart like a collapsing jenga tower. I know God can do miracles and I pray for that but I also know that He let's us face hard trials to bring us to Him and to others. Frankly, this trial may never end and that terrifies me but I have made it through almost 2 years with this syndrome so I know my God will bring me through whatever I have yet to face regardless of how long and daunting it may be.
I know it is going to take a direct miracle from the Lord for me to get better, I can't put my hope in doctors because they are helpless and hit a brick wall in treating me. It is a wall that God could send crumbling but He doesn't promise that. There is no magical cure for this syndrome; No matter what, outside of a Godly miracle, I will have to face the struggle every single day and it breaks me. Forever people, no end in MY sight. It's like taking the wrong road when you are driving at night and you get lost in the darkness surrounded by corn fields and you wonder if you will ever be able to find your way out. Will there ever be a way out for this syndrome? I don't know but I am certain of one thing, I will never be alone because God is walking with me even though I feel lost, broken, and afraid. Almighty God lets do this, no trial is bigger than You.
It is my reality and it sucks. Every dream and wish I have feels like it's falling apart like a collapsing jenga tower. I know God can do miracles and I pray for that but I also know that He let's us face hard trials to bring us to Him and to others. Frankly, this trial may never end and that terrifies me but I have made it through almost 2 years with this syndrome so I know my God will bring me through whatever I have yet to face regardless of how long and daunting it may be.
I know it is going to take a direct miracle from the Lord for me to get better, I can't put my hope in doctors because they are helpless and hit a brick wall in treating me. It is a wall that God could send crumbling but He doesn't promise that. There is no magical cure for this syndrome; No matter what, outside of a Godly miracle, I will have to face the struggle every single day and it breaks me. Forever people, no end in MY sight. It's like taking the wrong road when you are driving at night and you get lost in the darkness surrounded by corn fields and you wonder if you will ever be able to find your way out. Will there ever be a way out for this syndrome? I don't know but I am certain of one thing, I will never be alone because God is walking with me even though I feel lost, broken, and afraid. Almighty God lets do this, no trial is bigger than You.
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