so, I saw the new doctor and the new med is happening but he doesn't believe in ports. The ONE thing that has truly helped me more than any med. My old doctor is a confusing situation. Basically she all of a sudden went to the VA 2 hours away. When she left we had 2 weeks to figure stuff out and she was still going to be there and help and she said she won't loose practicing rights so she can still manage my stuff. uhhh no. There is no contact information for her and I have heard various things on her practicing rights.
Now that you have that good old background, I will say the source of my struggle is that my port is being weird and it likes to leak the fluids out and it is painful and my nurse said it probably needs replaced. I am trying to trust God but yet my true feelings are still there no matter what I do. I can't make them disappear, I know all the truths in my head but it stops. There is no off switch to feelings that I have found. Yes, God gives peace and I shouldn't worry, but I do. It might not even go like I will write in a second but I'm scared that it will go that way.
The problem is if it needs replaced my new doctor probably won't allow anything other than pulling it with no PICC line or replacement because he wants it removed already. I have gone a couple of days before without the fluids and I felt horrible and almost passed out multiple times. Before the port was placed I was passing out 6 times a DAY and I can't help but to think how bad it will be if I don't do that at all. I am in what if land, I know but it is a good possibility that it will go that way and I just want someone to realize hey this does help her we can continue and replace the port but I have my doubts on this new doctor.
I am trying to give it to God but feelings still remain so please pray for me I am really struggling with this even though I shouldn't be cause God, but I do.
God's free hope in the chaos of life's trials
Thursday, December 24, 2015
Sunday, December 13, 2015
updates
1. I see my new specialist that wants to take my case on Tuesday at 10:30. Please pray for wisdom and peace. A part of me feels like this is my last hope but ya know there is Jesus so that isn't truth.
2. My birthday post: (late. shame.)
I feel incredibly blessed to have made it to 24 with so many close calls but God wants me here for something. When you are almost bed bound it's kinda hard to not feel useless. Insert Jesus here. My life has been pretty crazy but I am so blessed to be surrounded by a whole church family and friends! It means the world to me to just be prayed for given this situation that I am in...again. I'm good at it, obviously. It is so hard to bring myself to do things like birthday parties because of the crash that follows. Today I can barely walk, or move, or breathe, or do anything besides laying in a heap all day. Having said that being able to celebrate with some crazy people was absolutely worth it. I needed it. I needed to know that life still happens. God knew that so I was able to function for it all. He is awesome. I made it this far and that alone is amazing. Thanks for everyone who wished me a happy birthday, it really was the BEST birthday weekend I have EVER had, such a blessing.
Lastly,
I don't know what the next year holds for me but I know WHO holds it and blessing abound despite and through circumstances, we forget that a lot. It's been a very hard year but I am not alone and we shall see what the next year of my life holds.
2. My birthday post: (late. shame.)
I feel incredibly blessed to have made it to 24 with so many close calls but God wants me here for something. When you are almost bed bound it's kinda hard to not feel useless. Insert Jesus here. My life has been pretty crazy but I am so blessed to be surrounded by a whole church family and friends! It means the world to me to just be prayed for given this situation that I am in...again. I'm good at it, obviously. It is so hard to bring myself to do things like birthday parties because of the crash that follows. Today I can barely walk, or move, or breathe, or do anything besides laying in a heap all day. Having said that being able to celebrate with some crazy people was absolutely worth it. I needed it. I needed to know that life still happens. God knew that so I was able to function for it all. He is awesome. I made it this far and that alone is amazing. Thanks for everyone who wished me a happy birthday, it really was the BEST birthday weekend I have EVER had, such a blessing.
Lastly,
I don't know what the next year holds for me but I know WHO holds it and blessing abound despite and through circumstances, we forget that a lot. It's been a very hard year but I am not alone and we shall see what the next year of my life holds.
Thursday, December 3, 2015
Newest new
Well, to begin all this out let me just request your prayers as decisions are made and for divine intervention in it all.
My previous electrophysiologist moved to fort Leonard wood and I was slightly upset about it and how it is going to change things but I absolutely admire her decision to switch to caring for those that risk there very own lives to save the community and world so I can't be too upset about it but it did bring change.
On Tuesday I went and saw a new one and he was VERY honest which I appreciate but at the same time you don't want to actually hear it. He reviewed my records and basically said there is nothing that he or any doctor he could transfer me to can help. He said Dr.Q has done so much for me, more than he would have even done.
Then he said this is a complicated situation and diagnosis and there is no standard treatment. He said there is no cure, it is a lifelong thing and because you are so young and your quality of life is so poor the only thing I can offer you that might help is to go a special autonomic disorder clinic. Problem: he doesn't know how "getting into one" is achieved so I have to consult my primary care to get that ball rolling.
He would prefer for me to go to The University of Toledo Health and vascular center which has the leading specialist in this. I also did research on the like 4 mayo clinics in Arizona, Florida, or Minnesota. The issue right now after talking to a couple places that I am looking at YEARS to get in. Yes, years for my only hope outside of Jesus.
So thankful for the hope I have in Jesus I do not understand how people make it through this without it. Basically, they go from fad to fad hoping that maybe "this one will help me" and really the focus needs to be switched from the fads to the ONLY One that can help and heal you. Fads might work for a tad but in no time you will be searching for a new one if it is not from the Lord. Our peace should come from this:
Matthew 11:28-29
“Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls."
That does not say turn to fads. yes, I realize God puts things and people there to help us. I am not saying that some of these fads could really be given to you by God. He is big and can do as He pleases so it is not out of the question altogether but look at your motives because I have seen So many people who try out all this stuff but they are replacing God and not "consulting" and using God to guide you on what HE wants you to try not what YOU want to try in desperation. God can give you something that could heal you but you cannot rely on that you must rely on HIM.
I am preaching to myself hard core right now as I struggle with new information and what will my life be like if no cure is available and my desire to look for hope in all the wrong places. We all struggle with this in one way or another and I am putting this out there mostly, for myself because I have to do some serious self preaching right now. Lord Jesus, come quickly.
In conclusion,
please pray for me, my family and my doctors as we make decisions on what to do going forward. It is complicated and we need God's direction so much right now.
My previous electrophysiologist moved to fort Leonard wood and I was slightly upset about it and how it is going to change things but I absolutely admire her decision to switch to caring for those that risk there very own lives to save the community and world so I can't be too upset about it but it did bring change.
On Tuesday I went and saw a new one and he was VERY honest which I appreciate but at the same time you don't want to actually hear it. He reviewed my records and basically said there is nothing that he or any doctor he could transfer me to can help. He said Dr.Q has done so much for me, more than he would have even done.
Then he said this is a complicated situation and diagnosis and there is no standard treatment. He said there is no cure, it is a lifelong thing and because you are so young and your quality of life is so poor the only thing I can offer you that might help is to go a special autonomic disorder clinic. Problem: he doesn't know how "getting into one" is achieved so I have to consult my primary care to get that ball rolling.
He would prefer for me to go to The University of Toledo Health and vascular center which has the leading specialist in this. I also did research on the like 4 mayo clinics in Arizona, Florida, or Minnesota. The issue right now after talking to a couple places that I am looking at YEARS to get in. Yes, years for my only hope outside of Jesus.
So thankful for the hope I have in Jesus I do not understand how people make it through this without it. Basically, they go from fad to fad hoping that maybe "this one will help me" and really the focus needs to be switched from the fads to the ONLY One that can help and heal you. Fads might work for a tad but in no time you will be searching for a new one if it is not from the Lord. Our peace should come from this:
Matthew 11:28-29
“Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls."
That does not say turn to fads. yes, I realize God puts things and people there to help us. I am not saying that some of these fads could really be given to you by God. He is big and can do as He pleases so it is not out of the question altogether but look at your motives because I have seen So many people who try out all this stuff but they are replacing God and not "consulting" and using God to guide you on what HE wants you to try not what YOU want to try in desperation. God can give you something that could heal you but you cannot rely on that you must rely on HIM.
I am preaching to myself hard core right now as I struggle with new information and what will my life be like if no cure is available and my desire to look for hope in all the wrong places. We all struggle with this in one way or another and I am putting this out there mostly, for myself because I have to do some serious self preaching right now. Lord Jesus, come quickly.
In conclusion,
please pray for me, my family and my doctors as we make decisions on what to do going forward. It is complicated and we need God's direction so much right now.
Tuesday, November 10, 2015
one of those days....
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.
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.
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.
Saturday, September 26, 2015
Life (super long post of me spilling my heart out)
A lot has happened since I blogged before and I refuse to recap so if you want to know something something ask. Anyway, I feel like I am falling apart one body part/organ at a time. I lay here waiting for that next ball to drop and given my life, it will happen eventually.
My health update is well, im alive so that is good. I have spent too much time in the hospital lately and I still feel like crap and they can't do anything for me. It is always great when a doctor tells you they don't know what to f****** do at this point, we have exhausted options. So that is depressing.
Speaking of depressing, I have been struggling with so much anxiety and depression lately. Nobody panic, I am on meds and I have Jesus so nothing is going to occur. obligatory statement for all panickers. Happy now. I am tired and so worn down that sometimes I just feel so lost. I feel like in a blink of an eye everything was taken from me. It is beyond hard knowing it will be 2 years in December when I got sick originally and here I am almost 2 years later still so ill. I hate looking outside because it reminds me of the boating and stuff I used to do in the summer and now it is gone. I miss the gym, the outdoors, working (ok what I did not where I worked) and just feeling like I am a member of society.
Here is a glimpse of my daily life, it' grand:
1. wake up to find out what kind of a day I will have--rarely it's tolerable and I can do things for about 30 minutes without collapsing.
2.lay in bed ALL DAY so I don't pass out (lay if my day is bad)
3. remind myself to eat because I don't really get hungry anymore so I have to remember to eat. The coming up with something is the hardest because I don't WANT anything therefore nothing sounds good. It's a cycle.
4 hook up my IV for half a liter of saline to keep my BP up and pray that I won't pass out or almost pass out, especially if I am in a public location such as the Walgreens checkout lane. That was fun.
5. depending on how I feel I occasionally will get out but I usually feel too sick to do anything besides reside in my cave (room)
6. refresh facebook a billion times thinking that magically it will have a ton of new things. This is where I begin coloring or painting for the rest of my day before it is time for bed.
7. hook up the second bag of IV saline and hook up the process of getting my feeding tube working, the machine is stupid.
8. lay in bed and fall asleep and then wake up 3-4 times throughout the night leaving me a zombie.
I know this is depressing but I am going to be honest no matter what. This routine has been my life for almost 2 years and I cannot even describe how daunting it is that there is no cure and currently nothing else can be done for me so I am stuck like this. I feel like all of my hopes and dreams were taken away, I can hardly walk and as soon as a guy finds out I am sick well, there goes that. I just want to be normal again. Thinking about the future it ends up filling with dreams and hopes that will probably not get to do given my state. My life dream of having a family seems so far away and kind of impossible because people don't like other sick people. It is what it is but it still sucks. God is going to have to perform a miracle if He chooses to in my life because I have so much going against me.
Despite everything against me, I know God has my life in His hands and that conquers all. Amazing. I just need lots of prayers right now as I struggle with this trial God has allowed me to have and pray for healing but most of all pray I will fulfill His will regardless of how hard it will be. POTS and SATAN will NOT win. I am determined to cling to Jesus.
My health update is well, im alive so that is good. I have spent too much time in the hospital lately and I still feel like crap and they can't do anything for me. It is always great when a doctor tells you they don't know what to f****** do at this point, we have exhausted options. So that is depressing.
Speaking of depressing, I have been struggling with so much anxiety and depression lately. Nobody panic, I am on meds and I have Jesus so nothing is going to occur. obligatory statement for all panickers. Happy now. I am tired and so worn down that sometimes I just feel so lost. I feel like in a blink of an eye everything was taken from me. It is beyond hard knowing it will be 2 years in December when I got sick originally and here I am almost 2 years later still so ill. I hate looking outside because it reminds me of the boating and stuff I used to do in the summer and now it is gone. I miss the gym, the outdoors, working (ok what I did not where I worked) and just feeling like I am a member of society.
Here is a glimpse of my daily life, it' grand:
1. wake up to find out what kind of a day I will have--rarely it's tolerable and I can do things for about 30 minutes without collapsing.
2.lay in bed ALL DAY so I don't pass out (lay if my day is bad)
3. remind myself to eat because I don't really get hungry anymore so I have to remember to eat. The coming up with something is the hardest because I don't WANT anything therefore nothing sounds good. It's a cycle.
4 hook up my IV for half a liter of saline to keep my BP up and pray that I won't pass out or almost pass out, especially if I am in a public location such as the Walgreens checkout lane. That was fun.
5. depending on how I feel I occasionally will get out but I usually feel too sick to do anything besides reside in my cave (room)
6. refresh facebook a billion times thinking that magically it will have a ton of new things. This is where I begin coloring or painting for the rest of my day before it is time for bed.
7. hook up the second bag of IV saline and hook up the process of getting my feeding tube working, the machine is stupid.
8. lay in bed and fall asleep and then wake up 3-4 times throughout the night leaving me a zombie.
I know this is depressing but I am going to be honest no matter what. This routine has been my life for almost 2 years and I cannot even describe how daunting it is that there is no cure and currently nothing else can be done for me so I am stuck like this. I feel like all of my hopes and dreams were taken away, I can hardly walk and as soon as a guy finds out I am sick well, there goes that. I just want to be normal again. Thinking about the future it ends up filling with dreams and hopes that will probably not get to do given my state. My life dream of having a family seems so far away and kind of impossible because people don't like other sick people. It is what it is but it still sucks. God is going to have to perform a miracle if He chooses to in my life because I have so much going against me.
Despite everything against me, I know God has my life in His hands and that conquers all. Amazing. I just need lots of prayers right now as I struggle with this trial God has allowed me to have and pray for healing but most of all pray I will fulfill His will regardless of how hard it will be. POTS and SATAN will NOT win. I am determined to cling to Jesus.
Tuesday, September 22, 2015
23
When I think back, I remember dreaming and wondering what my life will be like at 23. I imagined that I would at least be married with kids and just being an adult. Well, as you can see none of that has happened and I am beginning to question if it will ever occur because of this disease with no cure. What man is going to want to take this on?!
I don't know I just have no direction in life right now. IF I EVER go into remission I want to fulfill my dream of being a paramedic. At the moment though everyday is the same fight, the same battle, the same symptoms. This gets depressing I am not going to lie. I want to live life, go boating, be around people, go see extended family, go on vacations exc. and just enjoy this amazing world that God created but I feel so trapped in this body that cannot do anything right and it is destroying my life. Now before I get a butt load of "butt jesus's" yes, He holds my future and my life and I trust Him but we have to do our part.
I don't know I just have no direction in life right now. IF I EVER go into remission I want to fulfill my dream of being a paramedic. At the moment though everyday is the same fight, the same battle, the same symptoms. This gets depressing I am not going to lie. I want to live life, go boating, be around people, go see extended family, go on vacations exc. and just enjoy this amazing world that God created but I feel so trapped in this body that cannot do anything right and it is destroying my life. Now before I get a butt load of "butt jesus's" yes, He holds my future and my life and I trust Him but we have to do our part.
pity party
I'm having a "I don't want to live with this anymore" pity party today. I am just overwhelmed and I can't help but to loose bits of hope as my doctors hit brick walls one at a time. Its hard but these lyrics are making me remember that God has a plan and I just have to hang on for the ride.
My Savior My God
By Aaron Shust
I am not skilled to understand
What God has willed, what God has planned
I only know at his right hand
Stands one who is my Savior
I take him at His word and deed
Christ died to save me: this I read
And in my heart I find a need
Of Him to be my Savior
That He would leave His place on high
And for sinful man to die
You count it strange, so once did I
Before I knew my Savior
My Savior Loves, my Savior Lives
My Savior's always there for me
My God; He was, my God; He is
My God; is always gonna be
Yes, living, dying: let me bring
My Strength, my solace from this spring
That He who lives to be my King
Once died to be my Savior
My Savior Loves, my Savior Lives
My Savior's always there for me
My God; He was, my God; He is
My God; is always gonna be
My Savior My God
By Aaron Shust
I am not skilled to understand
What God has willed, what God has planned
I only know at his right hand
Stands one who is my Savior
I take him at His word and deed
Christ died to save me: this I read
And in my heart I find a need
Of Him to be my Savior
That He would leave His place on high
And for sinful man to die
You count it strange, so once did I
Before I knew my Savior
My Savior Loves, my Savior Lives
My Savior's always there for me
My God; He was, my God; He is
My God; is always gonna be
Yes, living, dying: let me bring
My Strength, my solace from this spring
That He who lives to be my King
Once died to be my Savior
My Savior Loves, my Savior Lives
My Savior's always there for me
My God; He was, my God; He is
My God; is always gonna be
Thursday, August 20, 2015
Rainbows and promises
so, I am reading this daily devotional book and I noticed something that I didn't realize before, here is the sentence:
Whenever we see a rainbow today, we are reminded that God is faithful and His promises are binding. The reasons for the flood have not gone away, but we can know God will never again punish us like that. --A year with God
I have been wondering how evil the world had to have been at that time for God to wipe everyone out. Then it makes me curious as to how far society today has to fall before God says that He has had enough. I feel like we are a straight path right to evil. Naturally, when I think about the time of the flood, I just assumed that the people were as evil as they can be and we will never see anything more evil in life but the reasons for the flood have not gone away, people are still evil, living in a world with chaos. We could be just as evil as they were.
It makes me amazed that God will put up with us and the evil that we all have. Patience, compassion, and love like no human can fathom. patience in the company of pure evil is almost too hard to comprehend.
Whenever we see a rainbow today, we are reminded that God is faithful and His promises are binding. The reasons for the flood have not gone away, but we can know God will never again punish us like that. --A year with God
I have been wondering how evil the world had to have been at that time for God to wipe everyone out. Then it makes me curious as to how far society today has to fall before God says that He has had enough. I feel like we are a straight path right to evil. Naturally, when I think about the time of the flood, I just assumed that the people were as evil as they can be and we will never see anything more evil in life but the reasons for the flood have not gone away, people are still evil, living in a world with chaos. We could be just as evil as they were.
It makes me amazed that God will put up with us and the evil that we all have. Patience, compassion, and love like no human can fathom. patience in the company of pure evil is almost too hard to comprehend.
Tuesday, August 11, 2015
hospitals vs. prison war
I think that hospital stays are one of the worst things ever. Besides prison. Although they do have some similarities. Let's compare.
1. Prison: you have a toilet in your cell that is wide open for anyone to view and you have to share with your cell partner. Sounds like bowel movement torture to me. Poor cell mate
Hospital: you must push your call light and wait forever for someone to come and take you to the bathroom that is smaller than a sardine can to the point where your IV pole won't fit thus forcing you to leave the door open and at any moment someone could come into your hospital room.
2. Prison: violent and very loud inmates that yell all day even at night
Hospital: old people have been known to spit on people yell senile things at the top of their lungs so EVERYONE can hear it all night long.
3. Prison: food is hardly edible
Hospital: slightly upgraded food but at least you have choices on what you want
4. Prison: You obviously cannot leave prison and most of the time you are lockup in a cell
Hospital: your hospital room becomes your torture chamber because you can't even get out of bed without a "butt monitor" going off. (I will explain butt monitor soon)
5. Prison: frequent wake up calls all night due to "men" that are out of control and act like 2 year olds
Hospital: you get woken up every few hours for vital signs, inhalers, blood draws (at 2 and 4 am), medications exc.
6.Prison: you have a roommate and you better pray that they don't have a murder conviction and they have to be one of your own people so you don't get shanked or something.
Hospital: sometimes you do have a roommate and sometimes not but you never know what they are going to do or say or YELL. Yell a lot. Such as "aww Lordy forgive me for my sins" ALL THE TIME
7. Prison: you must be aware at all times to ensure you aren't stabbed
Hospital: they can legally stab you with needles all the time
8. Prison: you must shower in a room full of other naked people. Nasty.
Hospital: you have to have a tech in the bathroom watching you shower or in some cases like mine you aren't even allowed to shower at all while in the hospital
**there is more but let's stop now. You got the point**
1. Butt monitor is a feature of the hospital bed that makes an alarm go off if you get out of bed. If you even move in bed it will send it off. On the plus side, you do get to say your butt is going off and that is always a good time.
HEALTH UPDATE
For one, I AM HOME!!!!! 7 days in the hospital is just bleck. I have a feeding tube surgically implanted in my abdomen and I now do tube feedings at night and can eat as tolerated during the day. I no longer have to stress about it which is great. So that's that. I am in pain from my incision but overall I feel a little better with the nutrition in me.
I cherish everyone's prayers and they are not in vain. God is good even when we don't like how a process is going we just have to remind ourselves that the last step of any process is right into God's arms.
1. Prison: you have a toilet in your cell that is wide open for anyone to view and you have to share with your cell partner. Sounds like bowel movement torture to me. Poor cell mate
Hospital: you must push your call light and wait forever for someone to come and take you to the bathroom that is smaller than a sardine can to the point where your IV pole won't fit thus forcing you to leave the door open and at any moment someone could come into your hospital room.
2. Prison: violent and very loud inmates that yell all day even at night
Hospital: old people have been known to spit on people yell senile things at the top of their lungs so EVERYONE can hear it all night long.
3. Prison: food is hardly edible
Hospital: slightly upgraded food but at least you have choices on what you want
4. Prison: You obviously cannot leave prison and most of the time you are lockup in a cell
Hospital: your hospital room becomes your torture chamber because you can't even get out of bed without a "butt monitor" going off. (I will explain butt monitor soon)
5. Prison: frequent wake up calls all night due to "men" that are out of control and act like 2 year olds
Hospital: you get woken up every few hours for vital signs, inhalers, blood draws (at 2 and 4 am), medications exc.
6.Prison: you have a roommate and you better pray that they don't have a murder conviction and they have to be one of your own people so you don't get shanked or something.
Hospital: sometimes you do have a roommate and sometimes not but you never know what they are going to do or say or YELL. Yell a lot. Such as "aww Lordy forgive me for my sins" ALL THE TIME
7. Prison: you must be aware at all times to ensure you aren't stabbed
Hospital: they can legally stab you with needles all the time
8. Prison: you must shower in a room full of other naked people. Nasty.
Hospital: you have to have a tech in the bathroom watching you shower or in some cases like mine you aren't even allowed to shower at all while in the hospital
**there is more but let's stop now. You got the point**
1. Butt monitor is a feature of the hospital bed that makes an alarm go off if you get out of bed. If you even move in bed it will send it off. On the plus side, you do get to say your butt is going off and that is always a good time.
HEALTH UPDATE
For one, I AM HOME!!!!! 7 days in the hospital is just bleck. I have a feeding tube surgically implanted in my abdomen and I now do tube feedings at night and can eat as tolerated during the day. I no longer have to stress about it which is great. So that's that. I am in pain from my incision but overall I feel a little better with the nutrition in me.
I cherish everyone's prayers and they are not in vain. God is good even when we don't like how a process is going we just have to remind ourselves that the last step of any process is right into God's arms.
Sunday, August 2, 2015
tomorrow
Lord wiling I will be able to get some answers and a treatment or a diagnostic plan. I have barely held anything down all weekend and I lost another pound. Please pray that I don't have to do any doctor chasing and that I can get ahold of them right away and get this "plan" I have been waiting all weekend for. Also, please pray that both my PCP and GI doctors take things seriously and don't blow me off. Pray that God would give them wisdom on how to help me because this is getting bad. Pray that my doctor will follow through on everything and doesn't drop the ball.
I am nervous about this, not the treatment but being accepted and believed and not blown off or get passed back and forth between doctors. In all this though I know God is in control and I will cling to this as I face this trial.
I am nervous about this, not the treatment but being accepted and believed and not blown off or get passed back and forth between doctors. In all this though I know God is in control and I will cling to this as I face this trial.
Saturday, August 1, 2015
hurry up and wait
I am not going to give a lot of details yet but I really need extra prayers right now. Saw my doc yesterday and I am not in a good spot. My blood shows basically that my body has started breaking down itself due to malnourishment and I have lost 5 lb in 2 weeks. He is very concerned and contacted my GI doctor and said I would get a call from him by the end of the day yesterday. Well, I got the phone call and his staff said that "they" (whoever that is. Probably GI) will give me a call but if I don't hear anything by Monday to call his office back.
This whole waiting it out through the weekend is making me a wreck. I need peace to carry me to Monday. (I can almost guarantee I won't hear anything by then)
This whole waiting it out through the weekend is making me a wreck. I need peace to carry me to Monday. (I can almost guarantee I won't hear anything by then)
Monday, July 27, 2015
Chatham Bible Church
I am feeling so blessed to have such a support system in my life. Chatham Bible Church will ALWAYS have a special place in my heart. They walked the journey with me in the past and they are still walking right there as I battle for life again. The love and compassion that I received will never be forgotten and I stand amazed at how eager everyone is to help me in any way possible. They will bring me to doctors appointments and sit out in the waiting room (where nobody wants to be. yay so much fun!)with a selfless attitude.
Chatham has changed a lot lately and when the process first began I was so upset because church was supposed to be the only stagnant thing in my life. When my health was spiraling out of my control, I relied on the stability of the church. Well, God has a way of focusing us on what HE wants. I learned to rely on God, not church, not people, but God. He is the only thing that will NEVER change. I am amazed at how God worked through Chatham and what He continues to do in the hearts and souls of everyone.
I haven't even been able to make it to church in a long time but I feel the love and compassion in my soul to a whole different level since the changes, I really feel like people care and I think the "life is always happy' fake face is being lost, opening us up to a whole new level of companionship and comfort that we could never see before. When you face trials, even the simplest things are a big deal. They can make or break you if you let them. I cannot even say how uplifted my soul was when a group of people came to my house and prayed with me and sang hymns. Not only did I feel the love of the body of Christ but it pulled me back towards Jesus.
Bringing people to Jesus whether as new believers or old ones that veered off the track and need help getting back is what we are meant to do and I just want to say that I think the changes are pulling us toward God everyday as He continues to work in our hearts.
I am truly thankful for this group of people God has given me. Thank you to those of you that support me in any form.
Chatham has changed a lot lately and when the process first began I was so upset because church was supposed to be the only stagnant thing in my life. When my health was spiraling out of my control, I relied on the stability of the church. Well, God has a way of focusing us on what HE wants. I learned to rely on God, not church, not people, but God. He is the only thing that will NEVER change. I am amazed at how God worked through Chatham and what He continues to do in the hearts and souls of everyone.
I haven't even been able to make it to church in a long time but I feel the love and compassion in my soul to a whole different level since the changes, I really feel like people care and I think the "life is always happy' fake face is being lost, opening us up to a whole new level of companionship and comfort that we could never see before. When you face trials, even the simplest things are a big deal. They can make or break you if you let them. I cannot even say how uplifted my soul was when a group of people came to my house and prayed with me and sang hymns. Not only did I feel the love of the body of Christ but it pulled me back towards Jesus.
Bringing people to Jesus whether as new believers or old ones that veered off the track and need help getting back is what we are meant to do and I just want to say that I think the changes are pulling us toward God everyday as He continues to work in our hearts.
I am truly thankful for this group of people God has given me. Thank you to those of you that support me in any form.
Friday, July 24, 2015
Prayer Requests
As you know my body has a mind of it's own but I have some dilemmas and issues that I would appreciate prayers for:
1. That I will find a good rheumatologist because the one they referred me to can't see me for a month and considering my inflammation levels in my body are triple what they should be I really don't want to wait that long. SSM only has ONE rheumatologist so, I could use guidance as I start looking elsewhere.
2. I have been passing out more lately due to malnutrition and I am waiting to get a CT scan but my GI Dr has to talk to the neurologist to ensure I can do oral contrast with my faulty nervous system. It has been over a week and they still haven't spoke. I would like to start up physical therapy again but the dietician will not let me until I have a feeding tube. I told the GI Dr that but he wants a CT which is fine but please pray that it will all get sorted soon and I can't start to go forward.
3. back to the passing out issues: my blood is extremely thin right now so please pray that if I pass out I do not injure myself in any way.
4. Lastly, for my emotional state, I feel trapped and frustrated with everything right now. I want answers and help and Jesus's peace.
1. That I will find a good rheumatologist because the one they referred me to can't see me for a month and considering my inflammation levels in my body are triple what they should be I really don't want to wait that long. SSM only has ONE rheumatologist so, I could use guidance as I start looking elsewhere.
2. I have been passing out more lately due to malnutrition and I am waiting to get a CT scan but my GI Dr has to talk to the neurologist to ensure I can do oral contrast with my faulty nervous system. It has been over a week and they still haven't spoke. I would like to start up physical therapy again but the dietician will not let me until I have a feeding tube. I told the GI Dr that but he wants a CT which is fine but please pray that it will all get sorted soon and I can't start to go forward.
3. back to the passing out issues: my blood is extremely thin right now so please pray that if I pass out I do not injure myself in any way.
4. Lastly, for my emotional state, I feel trapped and frustrated with everything right now. I want answers and help and Jesus's peace.
Wednesday, July 22, 2015
facing the unknown
Today is just not a day I want to face my everyday life. This illness is really taking it's toll both mentally and physically. I am really just emotional today because I want this over with, I don't want to live like this anymore. I feel trapped with no end in sight. Do I really have to live my entire life like this?! I just want my old life. The life where I could shop for hours and drive and work and go to the gym. I am just missing it so much. It amazes me how one syndrome and one day can change your life forever. I can't even go to walgreens without passing out these days and I am just worn out.
I know God can heal, He has done it with me so many times but I just don't know how to cope with my life right now. What if He allows me to have this forever? What will I do? I already feel like I can't take it anymore. I know God will help me through this but I just feel so defeated and broken right now. Life is hard.
please note: before everyone freaks out I am not depressed, just having one of those days where I throw myself a pity party. It happens.
I know God can heal, He has done it with me so many times but I just don't know how to cope with my life right now. What if He allows me to have this forever? What will I do? I already feel like I can't take it anymore. I know God will help me through this but I just feel so defeated and broken right now. Life is hard.
please note: before everyone freaks out I am not depressed, just having one of those days where I throw myself a pity party. It happens.
Monday, July 20, 2015
but God
Sometimes this journey that I am on overwhelms me. Always waiting for the next ball to drop. I really don't know where to go from here and thinking about my future is just depressing. I seem to attract illnesses, like my whole life, I cannot do just one disease I have to do 2 or 3, I just wait for them to come because it's just what I do. Pioneer really weird diseases. Somehow God is using this for something that I am not aware of. He has too. We don't suffer needlessly.
The last couple of weeks have been really hard and because of that I have been dealing with flare ups of my anxiety and depression and I get whiny. A lot of but God's have been going on... but God I don't want this anymore has been my favorite one since finding out that I could have lupus to add to my disease inventory. I seem to have dwelt in but God land for awhile now but I was thinking today about that and I decided I need someone to follow me around and say but God every few minutes because there are good forms of but God and I have been looking at the wrong one.
...but God. I look back at my life and I have had my fair share of close calls but with each one God has brought me through and out so why would He stop now? "but God brought you through the last thing where we thought the suffering would never end and He made it happen" He is God and He is all powerful and I know He heals because I have seen it time and time again. I am not alone, despite what it feels like sometimes. I will leave off with but God is sovereign and love and hope and peace and comfort and trustworthy and an overcomer.
The last couple of weeks have been really hard and because of that I have been dealing with flare ups of my anxiety and depression and I get whiny. A lot of but God's have been going on... but God I don't want this anymore has been my favorite one since finding out that I could have lupus to add to my disease inventory. I seem to have dwelt in but God land for awhile now but I was thinking today about that and I decided I need someone to follow me around and say but God every few minutes because there are good forms of but God and I have been looking at the wrong one.
...but God. I look back at my life and I have had my fair share of close calls but with each one God has brought me through and out so why would He stop now? "but God brought you through the last thing where we thought the suffering would never end and He made it happen" He is God and He is all powerful and I know He heals because I have seen it time and time again. I am not alone, despite what it feels like sometimes. I will leave off with but God is sovereign and love and hope and peace and comfort and trustworthy and an overcomer.
Friday, July 17, 2015
sinking in and my thoughts on this situation.
The POSSIBILITY that I could have an additional illness is starting to sink in today. My blood work showed triple the inflammation markers in my body. It can be from so many things so now the task of finding a cause begins. I hate this process because I am afraid of the unknown, if they come to me and say it is this diagnosis I can handle but I fear another 'we don't know"
I just can't do the "we don't know" or the "let's blame it on some random thing because we don't know and all will be peachy" I have heard that a lot lately and each one is like a slap in the face. My current situation is tricky because my blood work showed really conflicting reports (my expertise)
My levels of everything are a little off including my liver and kidney function numbers. I don't know what that is all about but my body is crazy.
Please pray for my emotional status. I just want to live, not just exist and these test results being so unclear makes me confused because it shows positive and negative results for everything. Of course. I am anxious to get into the rheumatologist and hear his interpretation of everything so please pray that it will be soon, I am waiting for them to call me back. Also pray for my joint pain and my knees giving out on me because NO FALLS is what I was told.
Being 23 and going through this is worse than when I was younger. You realize more of your life drifting away and all of the things you thought would happen just crumble such as dating, schooling and working. I always thought I would be getting married by now but I can guarantee I am a hot mess minus the hot part haha so that isn't happening and my dreams of being a nurse are gone. I am left to figure out new goals! I don't know what that looks like but I will figure it out.
I know GOD is fulfilling HIS plan for my life despite me getting in the way. One day I will be freed from this earth and I cling to that in these moments where life is just well hard. I was up the whole night puking for God only knows what reason but I know He has one so let's do this.
I just can't do the "we don't know" or the "let's blame it on some random thing because we don't know and all will be peachy" I have heard that a lot lately and each one is like a slap in the face. My current situation is tricky because my blood work showed really conflicting reports (my expertise)
My levels of everything are a little off including my liver and kidney function numbers. I don't know what that is all about but my body is crazy.
Please pray for my emotional status. I just want to live, not just exist and these test results being so unclear makes me confused because it shows positive and negative results for everything. Of course. I am anxious to get into the rheumatologist and hear his interpretation of everything so please pray that it will be soon, I am waiting for them to call me back. Also pray for my joint pain and my knees giving out on me because NO FALLS is what I was told.
Being 23 and going through this is worse than when I was younger. You realize more of your life drifting away and all of the things you thought would happen just crumble such as dating, schooling and working. I always thought I would be getting married by now but I can guarantee I am a hot mess minus the hot part haha so that isn't happening and my dreams of being a nurse are gone. I am left to figure out new goals! I don't know what that looks like but I will figure it out.
I know GOD is fulfilling HIS plan for my life despite me getting in the way. One day I will be freed from this earth and I cling to that in these moments where life is just well hard. I was up the whole night puking for God only knows what reason but I know He has one so let's do this.
Wednesday, July 15, 2015
doctor appointments and test results
I went to see my GI on the 13th and he says that there is something wrong and he doesn't think it is what my previous doctor said "it is just one of your meds but I don't know which one"...He said a full workup has to be done and based on the results of a CT scan and lab work, we will make a decision about putting in a G tube (feeding tube)due to my weight loss.
I saw my PCP nurse practitioner yesterday due to joint pain and he got labs and just called and told me that all of my inflammation markers came back quite high so he is sending me to a rheumatologist with a suspicion of Lupus.
I don't know what I think so I shall just leave you with these nuggets of information.
I saw my PCP nurse practitioner yesterday due to joint pain and he got labs and just called and told me that all of my inflammation markers came back quite high so he is sending me to a rheumatologist with a suspicion of Lupus.
I don't know what I think so I shall just leave you with these nuggets of information.
Tuesday, July 7, 2015
Goals and prayer requests
The other day I was thinking about what my goals for my life are, long term and short term. Sometimes the gravity of my "situation" hits me like a ton of bricks. That happened while goal pondering was in action.
I have "normal" really long term goals of having a family and all that but as I was pondering I came up with the thing I miss the MOST and I want to be able to do RIGHT NOW more than anything: go out on the river in the boat with a trolling motor, with music players in plastic bags and just enjoy the scenery on the water. It is my favorite place to be (as long as I have sunscreen ahem bad story. Wear sunscreen people. 3rd degree burns are icky) I was explaining this HUGE goal to my dad I think it hit him too judging by the look on his face, I think we both realized in that moment how much my life has changed and how much I will have to fight to get anywhere close to where I used to be.
I currently feel defeated and so not ready to fight this hard and it will probably involve more and new doctors, specialists, tests and procedures, I can't stay stagnant like I am right now, it is time for the fight of my life to really begin and I am not ready but God will carry me and guide me in whatever I need to do.
Please pray for me that God will show me where to even begin because I am just overwhelmed and clueless.
Also, I have an appointment with a GI doctor on the 13th to discuss my weight loss, nausea, and lack of appetite that is making me weaker by the day so pray God will give him direction on what to do to get me nutrients and energy because I have to start with that.
I saw a dietician shortly after my weight loss stuff happened and she recommended a feeding tube which would be tons of fun as I am sure you can imagine and they never ended up doing it but it will be discussed on the 13th so big prayers for that decision.
If that is decided upon pray for wisdom on what kind to go with, I would have 3 choices with my least favorite being a torture device with a tube that goes down your nose to your stomach where they then give you baby formula. It'sjoyous traumatizing.
I have "normal" really long term goals of having a family and all that but as I was pondering I came up with the thing I miss the MOST and I want to be able to do RIGHT NOW more than anything: go out on the river in the boat with a trolling motor, with music players in plastic bags and just enjoy the scenery on the water. It is my favorite place to be (as long as I have sunscreen ahem bad story. Wear sunscreen people. 3rd degree burns are icky) I was explaining this HUGE goal to my dad I think it hit him too judging by the look on his face, I think we both realized in that moment how much my life has changed and how much I will have to fight to get anywhere close to where I used to be.
I currently feel defeated and so not ready to fight this hard and it will probably involve more and new doctors, specialists, tests and procedures, I can't stay stagnant like I am right now, it is time for the fight of my life to really begin and I am not ready but God will carry me and guide me in whatever I need to do.
Please pray for me that God will show me where to even begin because I am just overwhelmed and clueless.
Also, I have an appointment with a GI doctor on the 13th to discuss my weight loss, nausea, and lack of appetite that is making me weaker by the day so pray God will give him direction on what to do to get me nutrients and energy because I have to start with that.
I saw a dietician shortly after my weight loss stuff happened and she recommended a feeding tube which would be tons of fun as I am sure you can imagine and they never ended up doing it but it will be discussed on the 13th so big prayers for that decision.
If that is decided upon pray for wisdom on what kind to go with, I would have 3 choices with my least favorite being a torture device with a tube that goes down your nose to your stomach where they then give you baby formula. It's
One foot in front of the other
I am so fed up with this disease. If I didn't have God I would have given up a long time ago because it feels too hard to keep going and it is outside of God. I am overwhelmed, confused, exhausted, weak, frustrated and grasping for hope. Thankfully God knows when I need hope and shows me that He has a purpose in everything even though I don't understand it.
Under my renewed hope is a battle, one that I did not sign up for and one I am not thrilled by. I don't know what to do with myself anymore and my doctor said there is nothing I can do besides what I am currently doing. Although, when I called to tell her how bad my symptoms have been the last couple of days where I almost pass out 6 times and I lost my hearing only to have it return in the form of swooshing the response I got was "well, lay in bed since you are dizzy but don't lay in bed all day". Ahem. uhhh what?! regardless, I have remained in bed due to my malnutrition, weakness, and dizzy spells because blood thinners and passing out don't mix well.
My body has gone psychotic and woke me up at 5:15 with pain in every muscle of my body and in my ear cartilage (super weird) and I am shaky and nauseated and weak and dizzy, all grand things to wake up to. So, now I am doing a bag of fluids to see if it might help. This road is never ending and I feel like I am just waiting for the next ball to drop and have something more serious occur. My strength is depleted but throughout my whole life God has shown He is really in control, not doctors, not me, Him so onward I go, I just wish it wasn't at 5am!
Under my renewed hope is a battle, one that I did not sign up for and one I am not thrilled by. I don't know what to do with myself anymore and my doctor said there is nothing I can do besides what I am currently doing. Although, when I called to tell her how bad my symptoms have been the last couple of days where I almost pass out 6 times and I lost my hearing only to have it return in the form of swooshing the response I got was "well, lay in bed since you are dizzy but don't lay in bed all day". Ahem. uhhh what?! regardless, I have remained in bed due to my malnutrition, weakness, and dizzy spells because blood thinners and passing out don't mix well.
My body has gone psychotic and woke me up at 5:15 with pain in every muscle of my body and in my ear cartilage (super weird) and I am shaky and nauseated and weak and dizzy, all grand things to wake up to. So, now I am doing a bag of fluids to see if it might help. This road is never ending and I feel like I am just waiting for the next ball to drop and have something more serious occur. My strength is depleted but throughout my whole life God has shown He is really in control, not doctors, not me, Him so onward I go, I just wish it wasn't at 5am!
Monday, June 29, 2015
Taking things for granted and peace that surpasses all understanding
As a society we tend to take so much for granted and we whine about having to do the little things or chores. Imagine if all of a sudden you were incapable of doing any kind of chore or other little things. At first it sounds great (yay no chores!) but that doesn't last long and will eventually result in that whole whine with a bad attitude thing again. Here is examples of stuff that get taken for granted and I am unable to do most of them or they are very exhausting. Sounds weird to say but I am dying to be able to do chores again. example:
1. Drive- I cannot drive for 3 more months due to my seizure
2. Shower- they are the worst the heat from the water and the activity of doing it even with a shower chair drains all my energy
3. bedroom- I would love to be able to clean up the messes I make on my carpet but nope.
4. closet- I have been wanting to clean it since I moved back to my parents but I can't. This will eventually be my 1st challenge
5. Laundry- I am unable to do it at all so my dad has to do it for me.
7. clothing- I would love to hang my clothes up but world war 3 happened in my closet
8. Bed- Cleaning out under it
9. Sheets- putting sheets on my bed completely does me in
10. stairs- I literally have not left my bedroom for days at a time because stairs make my pulse 150ish
11. clothing 2- I would love to go through all of my clothes and get rid of the ones that I don't want
12. car sick- being in a car for 30 minutes or more sends my nervous system into "kill me now mode"
13. paint- one of the vertical dressers that is so not attractive
14 Gym-I miss going to the gym so much!
15. food- I have to text one of my parental units and tell them what I want to eat and drink and it is brought to me. Also, food makes me sick so that is a problem.
16. river- I miss going to the river and swimming or using the trolling motor and blow up boat. MISS IT MAJORLY.
please note: I am not asking for help, I am just reminding people that one day everything can be taken from you so enjoy being able to do laundry, walk up and down stairs, clean whatever your heart desires, make memories of going places with your family because our days are not guaranteed.
Please pray for trust, wisdom, patience, and faith. Everything is in God's timing which is perfect but we as humans want it now. Yeah, just prayers in general would be great because this "journey" is getting long and wearing me out with each issue or symptoms. I am just worn. That is what God is for though :)
1. Drive- I cannot drive for 3 more months due to my seizure
2. Shower- they are the worst the heat from the water and the activity of doing it even with a shower chair drains all my energy
3. bedroom- I would love to be able to clean up the messes I make on my carpet but nope.
4. closet- I have been wanting to clean it since I moved back to my parents but I can't. This will eventually be my 1st challenge
5. Laundry- I am unable to do it at all so my dad has to do it for me.
7. clothing- I would love to hang my clothes up but world war 3 happened in my closet
8. Bed- Cleaning out under it
9. Sheets- putting sheets on my bed completely does me in
10. stairs- I literally have not left my bedroom for days at a time because stairs make my pulse 150ish
11. clothing 2- I would love to go through all of my clothes and get rid of the ones that I don't want
12. car sick- being in a car for 30 minutes or more sends my nervous system into "kill me now mode"
13. paint- one of the vertical dressers that is so not attractive
14 Gym-I miss going to the gym so much!
15. food- I have to text one of my parental units and tell them what I want to eat and drink and it is brought to me. Also, food makes me sick so that is a problem.
16. river- I miss going to the river and swimming or using the trolling motor and blow up boat. MISS IT MAJORLY.
please note: I am not asking for help, I am just reminding people that one day everything can be taken from you so enjoy being able to do laundry, walk up and down stairs, clean whatever your heart desires, make memories of going places with your family because our days are not guaranteed.
Please pray for trust, wisdom, patience, and faith. Everything is in God's timing which is perfect but we as humans want it now. Yeah, just prayers in general would be great because this "journey" is getting long and wearing me out with each issue or symptoms. I am just worn. That is what God is for though :)
Thursday, June 18, 2015
gotta face the clouds to find the silver lining
Sometimes God gives you the perfect songs at the perfect times. If you need hope or a God reminder here you go:
https://www.youtube.com/watch?v=ur6Zznc407U
Everybody falls sometimes
Gotta find the strength to rise
From the ashes and make a new beginning
Anyone can feel the ache
You think it's more than you can take
But you are stronger, stronger than you know
Don't you give up now
The sun will soon be shining
You gotta face the clouds
To find the silver lining
I've seen dreams that move the mountains
Hope that doesn't ever end
Even when the sky is falling
I've seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That's what faith can do
https://www.youtube.com/watch?v=ur6Zznc407U
Everybody falls sometimes
Gotta find the strength to rise
From the ashes and make a new beginning
Anyone can feel the ache
You think it's more than you can take
But you are stronger, stronger than you know
Don't you give up now
The sun will soon be shining
You gotta face the clouds
To find the silver lining
I've seen dreams that move the mountains
Hope that doesn't ever end
Even when the sky is falling
I've seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That's what faith can do
Wednesday, June 17, 2015
waking up
This road that I never asked or imagined I would be on is getting long and tiring. December 18th of 2013 changed my life forever with no warning. God doesn't always gives us warnings but He does walk through it with us. The worst part of everyday is waking up. Waking to face the full reality that you are still sick and can hardly walk hits like a ton of bricks. You wake up not knowing if you will have a better day, or a day filled with light headedness, nausea, shaking and my newest and scariest thing of will I have a seizure. The unpredictability of everyday is exhausting and takes an emotional toll on you. This week has been rough (rain does NOT help FYI) I am worn down and so tired of literally having to fight for my life every single day with a conscious effort.
I have really been thinking about and missing my "old" life and everything I used to be able to do that I can't anymore and the list would be a 30 page document. Simply getting out of bed at all in the course of a day is a challenge. As I work through the emotions that tag along for the ride, I am trying to be thankful for what I do have and stop dwelling on everything I don't. It happened, it's over, looking back does not get me anywhere so I am pushing through each day the best I can and trying to be thankful, not bitter. I have no idea what each day of waking up will bring but I can say I can do it if God is with me. Hard but possible.
I have really been thinking about and missing my "old" life and everything I used to be able to do that I can't anymore and the list would be a 30 page document. Simply getting out of bed at all in the course of a day is a challenge. As I work through the emotions that tag along for the ride, I am trying to be thankful for what I do have and stop dwelling on everything I don't. It happened, it's over, looking back does not get me anywhere so I am pushing through each day the best I can and trying to be thankful, not bitter. I have no idea what each day of waking up will bring but I can say I can do it if God is with me. Hard but possible.
Sunday, June 14, 2015
young with chronic illness
When you are young and have a chronic illness your age makes it extra fun: (sarcasm warning. It's how I handle my life.)
1. you get to hear "you are too young for all this" ALL THE TIME. nah I am really 90. derp.
2. Most "men" are not mature enough to handle all that goes along with chronic illness and a relationship together.
3. The concept that your illness may follow you for the next 60 YEARS of your life is possible. That is a long time in case you forgot. Be sensitive to this fact. We don't like it anymore than you do.
4. Knowing that there is no set treatment course that works for everyone, it's just a trial and error journey which is not very fun in case you wanted to know.
5. The next 60ish years of your life are entirely unknown. Will I ever be able to work again? Will I have to do IV fluids everyday for the rest of my life? Will I continue to have seizures? Will the muscle pain from my bodies inability to regulate electrolytes ever stop? This is on repeat in my brain and many others who suffer from a chronic illness as well. We feel like we should be working and raising a family and everything that the "typical" women is "supposed" to do in life but the illness gets in the way of moving forward in life and that can be heart breaking so don't rub it in. Please.
6. It seems so wrong that not only do we have to deal with being in our 20's with passing out spells, muscle pain, immobility, daily IV infusions, and the many physical aspects that follow, it takes it's toll on you emotionally just not knowing anything. I am going to give you a glimpse into my psych for a second. I know scary. Just keep reading and you will find it.
7. I have noticed a lack of understanding and empathy that only goes with young people its as if they cant believe you are sick and then they switch and refuse to believe it because apparently you cant be young and ill. I didn't get the memo.
8. Yes I use a cane, wheelchair or rollator. Yes, I rely on them. You can say all you want about how we young people should not rely on them because we can't use it forever. Well, guess what? I won't have a future if I can't move around despite having these devices. It is the only way to go places sometimes. If it helps you get out and about then use it as much as you want.
9. Your illness and pain is real and don't let ANYONE tell you otherwise. Just because we are young and "ill" does not mean it is all in our heads no matter how hard it is for YOU to grasp, it is as real as anything else.
---If no treatment is found this is what the course of my life looks like at the moment. Yes, before I begin there is hope for change and I am well aware of that but if things continue like how they are now my life looks like this: Also enter Jesus here because He is the maker of my days.
ahem and this is my life: Continuous daily infusions of IV fluids with doses of Benadryl and an anti nausea med put in me to keep me from (usually) puking. Every week I have to have this needle removed from my chest and a new one replaced as well as a check of the consistency of my blood due to being high risk for blood clots. I cannot stand and walk without at least being shaky and at any moment BAM I could collapse. I live in a constant state of anxiety over having another seizure which the neurologist said is possible while we regulate my meds. It is scary not knowing if each time you stand up you might have a meeting with your BFF the floor. Waking up in severe muscle spasms because my body no longer regulates it's own electrolytes and I have a buttload of over the counter ones to try to replace what my body fails to produce on its own which only semi-helps. I have no appetite and ever since I got sick I am down 50 pounds due to a lack of appetite and taste bud changes. I cannot be in a vehicle for more than 30 minutes without feeling sick. A lot of days I can only make it to the bathroom and then back to bed, not because I am lazy or milking it or being dramatic but that is all my body will allow unless I go around passing out all over the place which is dangerous. blood thinners uuhhh yeah, no falls for me.
--In conclusion, most of the people with POTS have all inward symptoms which is why people tend to not believe us. Please tell me how you think I should look and I will get right on that. There is a massive war going on in our bodies that cannot be comprehended and people to step up and instead of showing anger, bitterness, and mistrust of the one struggling just because it isn't visible to you. Chronic illness for most of my life since I was 15 has given me a glimpse into the hearts of those who refuse to be compassionate and try to understand what others are going through instead of being like oh no they are too young, they cannot possibly be fighting for life. Well, we are, I am. It is a fight to get up everyday. Sometimes, just to open my eyes but it is real. Now that you have experienced a scary look into my brain I pray that this gives you a different perspective and a sense of compassion and love for those around you who are suffering more than you know. Please listen and support your fellow man but please please please don't throw out "try this it will cure you" oh look "here is this thing you can drink that will heal you and all the specialists in the world have not heard of this cure" Sarcasm again. I am very confident in my doctor and if there was a cure I am fairly certain she would know about it by now so just please don't even go down THAT path. It ends up being hurtful.
I hope this has given you a glimpse into how hard it is to be young and facing the above realities for decades. Jesus is our hope and strength but we can use encouragement from others just to feel less alone. Chronic illness is majorly isolating and I am down to a handful of close friends but I have lost most of them. I get a lot of support from the "older" crowd but only a handful of supporters that are my age. It is beyond hard to be young and ill so please pray for those around you that may be facing various trials in this life.
1. you get to hear "you are too young for all this" ALL THE TIME. nah I am really 90. derp.
2. Most "men" are not mature enough to handle all that goes along with chronic illness and a relationship together.
3. The concept that your illness may follow you for the next 60 YEARS of your life is possible. That is a long time in case you forgot. Be sensitive to this fact. We don't like it anymore than you do.
4. Knowing that there is no set treatment course that works for everyone, it's just a trial and error journey which is not very fun in case you wanted to know.
5. The next 60ish years of your life are entirely unknown. Will I ever be able to work again? Will I have to do IV fluids everyday for the rest of my life? Will I continue to have seizures? Will the muscle pain from my bodies inability to regulate electrolytes ever stop? This is on repeat in my brain and many others who suffer from a chronic illness as well. We feel like we should be working and raising a family and everything that the "typical" women is "supposed" to do in life but the illness gets in the way of moving forward in life and that can be heart breaking so don't rub it in. Please.
6. It seems so wrong that not only do we have to deal with being in our 20's with passing out spells, muscle pain, immobility, daily IV infusions, and the many physical aspects that follow, it takes it's toll on you emotionally just not knowing anything. I am going to give you a glimpse into my psych for a second. I know scary. Just keep reading and you will find it.
7. I have noticed a lack of understanding and empathy that only goes with young people its as if they cant believe you are sick and then they switch and refuse to believe it because apparently you cant be young and ill. I didn't get the memo.
8. Yes I use a cane, wheelchair or rollator. Yes, I rely on them. You can say all you want about how we young people should not rely on them because we can't use it forever. Well, guess what? I won't have a future if I can't move around despite having these devices. It is the only way to go places sometimes. If it helps you get out and about then use it as much as you want.
9. Your illness and pain is real and don't let ANYONE tell you otherwise. Just because we are young and "ill" does not mean it is all in our heads no matter how hard it is for YOU to grasp, it is as real as anything else.
---If no treatment is found this is what the course of my life looks like at the moment. Yes, before I begin there is hope for change and I am well aware of that but if things continue like how they are now my life looks like this: Also enter Jesus here because He is the maker of my days.
ahem and this is my life: Continuous daily infusions of IV fluids with doses of Benadryl and an anti nausea med put in me to keep me from (usually) puking. Every week I have to have this needle removed from my chest and a new one replaced as well as a check of the consistency of my blood due to being high risk for blood clots. I cannot stand and walk without at least being shaky and at any moment BAM I could collapse. I live in a constant state of anxiety over having another seizure which the neurologist said is possible while we regulate my meds. It is scary not knowing if each time you stand up you might have a meeting with your BFF the floor. Waking up in severe muscle spasms because my body no longer regulates it's own electrolytes and I have a buttload of over the counter ones to try to replace what my body fails to produce on its own which only semi-helps. I have no appetite and ever since I got sick I am down 50 pounds due to a lack of appetite and taste bud changes. I cannot be in a vehicle for more than 30 minutes without feeling sick. A lot of days I can only make it to the bathroom and then back to bed, not because I am lazy or milking it or being dramatic but that is all my body will allow unless I go around passing out all over the place which is dangerous. blood thinners uuhhh yeah, no falls for me.
--In conclusion, most of the people with POTS have all inward symptoms which is why people tend to not believe us. Please tell me how you think I should look and I will get right on that. There is a massive war going on in our bodies that cannot be comprehended and people to step up and instead of showing anger, bitterness, and mistrust of the one struggling just because it isn't visible to you. Chronic illness for most of my life since I was 15 has given me a glimpse into the hearts of those who refuse to be compassionate and try to understand what others are going through instead of being like oh no they are too young, they cannot possibly be fighting for life. Well, we are, I am. It is a fight to get up everyday. Sometimes, just to open my eyes but it is real. Now that you have experienced a scary look into my brain I pray that this gives you a different perspective and a sense of compassion and love for those around you who are suffering more than you know. Please listen and support your fellow man but please please please don't throw out "try this it will cure you" oh look "here is this thing you can drink that will heal you and all the specialists in the world have not heard of this cure" Sarcasm again. I am very confident in my doctor and if there was a cure I am fairly certain she would know about it by now so just please don't even go down THAT path. It ends up being hurtful.
I hope this has given you a glimpse into how hard it is to be young and facing the above realities for decades. Jesus is our hope and strength but we can use encouragement from others just to feel less alone. Chronic illness is majorly isolating and I am down to a handful of close friends but I have lost most of them. I get a lot of support from the "older" crowd but only a handful of supporters that are my age. It is beyond hard to be young and ill so please pray for those around you that may be facing various trials in this life.
Friday, June 5, 2015
HOPE: One day at a time
Hope appears on the horizon each morning in the form of a brand new day---C. S. Lewis
I never would have imagined that my life would be what it is right now. For whatever reason I always thought that since I overcame my nerve pain illness thing that it would be the last of my physical trials and I could continue on in life and have a family, be able to hold down the job I loved, and never have to go back there again. Obviously I was way off and have not managed any of those things. I don't know what God is doing with my life but I know He holds it in His hand and that I am here for a reason. My seizure on Sunday night that came out of nowhere was another wake up call to me showing that I am not in control but God is and He is allowing me to go through all of this for a reason but He is proving to me that He never leaves or forsakes. He has now brought me through 2 seizures that have not caused any permanent damage and that alone is a miracle. Yes, I have other issues and have had a lot of close calls but obviously God is not done with me on this earth and everyday He is right there giving me hope and peace when I feel like I can't keep going and life is too hard.
That does not mean that it is not a struggle. My current struggle is missing and almost forgetting what it is like to feel healthy, To get out of bed without having a date with the floor. The constant fear of having another ball drop such as another seizure, pass out moment, memory loss exc. is always present. If I look back on my whole life I truly stand amazed that I am alive today despite a handful of close calls.
It makes me ponder what God's plan for my life is sense there is no cure for POTS or autonomic dysfunction at this time. I truly don't know what that plan is or what the next day in my life will look like. Will I pass out, have a seizure, be relatively ok?! Everyday is unknown but with each new day I try to count my blessings and be so thankful that I am still here on earth and hope can be found in my savior who loves me more than I can even imagine. So despite feeling a little sad and missing my life I am reminded that each morning is filled with hope from Christ himself and that hope will get me through the good times and the bad.
Saturday, May 9, 2015
stares and passing out
I hate how when I go places people just stare at me. I would rather have you just simply ask what is wrong with me verses just staring at me and if you are going to stare in the first place don't make it so obvious. At least try to pretend that you aren't doing it instead of the deer in a headlight look. Last time I checked I am not a deer, or a car.
Also, I might have forgotten what it is like to almost pass out in public and rushing to find somewhere to sit that is not right on the floor or in a parking lot. It is like an instant panic feeling as the blood drains from your brain and things get a little "fuzzy". I was reminded when I came close to passing out in 2 parking lots, payless and Chili's so far today.
Also, I might have forgotten what it is like to almost pass out in public and rushing to find somewhere to sit that is not right on the floor or in a parking lot. It is like an instant panic feeling as the blood drains from your brain and things get a little "fuzzy". I was reminded when I came close to passing out in 2 parking lots, payless and Chili's so far today.
Tuesday, May 5, 2015
Old days
I have really been struggling these last few days with my reality. This is what my life has come to and it is depressing to realize I can no longer do most of the things I loved the most. I miss swimming and boating/fishing on cuivre river, late night drives to clear my head, being able to take mini vacations to get away, and being able to simply just go to fast eddie's whenever I want. There is so much more but you get the point.
I look back on how I got here and it is a giant pill to swallow when I feel like I am loosing years of my life again because my body cannot function correctly. I am longing soooo much for a vacation but I have no idea what that would look like. I just miss everything lately so I try to focus on the right here and right now but it isn't an easy task.
I look back on how I got here and it is a giant pill to swallow when I feel like I am loosing years of my life again because my body cannot function correctly. I am longing soooo much for a vacation but I have no idea what that would look like. I just miss everything lately so I try to focus on the right here and right now but it isn't an easy task.
Sunday, May 3, 2015
Love/hate relationship
I have a love/hate relationship with this weather. It is absolutely amazing out and I love the sunshine and having my windows open but it is also a huge reminder of what I can't do anymore. Summer used to be filled with trips to quiver river to swim or to take the boat and trolling motor out and spending hours out on the water. Trips to creve Coeur park to walk the track and then take a detour and be lost for hours enjoying the weather and the wildlife in the middle of nowhere. Long late night drives to "explore" St. Louis and learning new ways to get places in the process. Trips out to Fast Eddie's to listen to the live bands and watch drunk people being idiots.
All of this has been taken from me and the only way I enjoy the weather is to have my windows open while I lay in bed hooked up to bags of saline so my blood pressure stays stable. needless to say I have been a little sad lately, I don't know what God is doing but it is for an unknown reason so I cling to that since none of this makes sense to me.
All of this has been taken from me and the only way I enjoy the weather is to have my windows open while I lay in bed hooked up to bags of saline so my blood pressure stays stable. needless to say I have been a little sad lately, I don't know what God is doing but it is for an unknown reason so I cling to that since none of this makes sense to me.
Friday, May 1, 2015
future
I have no idea what my future holds. I know you are thinking "well, nobody does" which is technically true but most people at least know what direction they are heading. I know nothing and have no clue where I am headed. I try to avoid thinking about my future but today it is on my mind. Normal every day things that you don't even think about have become so hard.
My social security paychecks are such a blessing but I also know that I will not be able to live off of it or move out of my house. I have no idea if/when I will be able to work again. When you put everything together it equates to me 'never" or at least a long time from now before I will be able to have a normal life. It is depressing to realize that without a miracle I am stuck and I feel like the world around me is going on while I am busy trying to fight this syndrome.
Knowing that I might be stuck in my parents house has been such a hard pill to swallow. I love them and am thankful for them but everyday I think about how much I loved being on my own and living a different life that I loved. I am 23 and the thought that I am no where close to where I can move is so hard, I want it so bad but unless I am able to work again it will not be an option and who knows if I will ever be able to hold down a normal job, some people with this syndrome can but I know a lot of them can't.
The fact that I am young makes this that much harder. I wish so bad to be able to go out and do things, but it only occurs on a RARE occasion. I would love a family of my own but considering I am a mess God would have to just drop someone from the sky because nobody wants to be a caretaker in their 20's. The fact that I require a caretaker in the first place tugs on my heart as I realize this is what my life has become and there is no way out unless God chooses to free me from this.
I am really trapped in my room, in bed because my legs shake so bad that I collapse and I can feel the blood draining from my head and going to my feet where it doesn't belong putting me at risk of passing out. I just don't understand how I ended up in this physical state of chaos all over again. There are things in life that we will never be able to comprehend until we meet Jesus face to face and see how the puzzle pieces of our lives connect.
I'm just feeling a little hopeless as the days and months go by despite the progress that I have made but I know God knows exactly what is happening and has it all under control. The control may not look like what I want it to but I am really learning that God is doing something in my life and I need to step back and trust Him no matter how hard it is to do.
Monday, April 27, 2015
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.
Saturday, April 25, 2015
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.
Friday, April 24, 2015
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
Tuesday, April 21, 2015
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.
Thursday, April 9, 2015
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.
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.
Friday, April 3, 2015
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.
Thursday, April 2, 2015
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)
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)
Thursday, March 26, 2015
NOVEL warning. Suck it up and find Jesus
I went to see my neurologist today but let's takes a step back. Last night I had a total meltdown with hyperventilation and everything that comes with pure fear. I was terrified that I would not be able to make it to my appointment without collapsing and what if this is permanent? Everything went rampant in my brain. When you are young and have a lot of health issues most doctors tend to downside your issues and I really thought that would happen today. I felt like I couldn't handle being told "oh it's nothing to be concerned about, you are young enough for us to not have to really pursue things. It will go away on it's own,"
I have been told that more times than I can count as well as doctors saying I am faking things and honestly, once you have been treated that way it always stays with you and in the back of your mind "being crazy" just runs through it in everything. I have gotten to the point where it doesn't stop me from getting treatment like it used too but it is still hanging out back there. So, back to my mental breakdown: I was terrified to know that I would have to go down the stairs in the morning and get in and out of cars and it was all just too much and I was convinced I couldn't do it. My dad caught me in tears in my room because I felt like my body was giving out and I was just scared and couldn't do a thing about it.
My dad just sat there and held me and read bible verses to me until I calmed enough to breathe and talk about everything. This week has been sooo hard for me. I am tired, stressed, weak, fragile, scared, so done and losing hope. My inability to speak correctly has pulled me into an isolated corner because I just can't hold conversations. I can't walk without nearly collapsing, my speech has been stuttered with the occasional wrong word flying out of my mouth. I know what I want to say but the words were not matching up in my brain, facial twitches and complete involuntary movements.
I can't control anything, I like to pretend for most of my life that I can but really It's God's thing. Forever. I just got overwhelmed. My family has it's fair share of health issues and I have to say my dad has kept this house up and running and being there for me for everything. He just kept saying last night as I am in tears and shaking "it's ok. You are not alone, we are here for you and we will get through this. God has performed amazing miracles with you in the past so what makes you think He would give up now?!" My dad is my earthly rock. Dads, regardless of how old your daughter is she still needs to know you will always be there.
Anyways, I calmed down and was able to go to my appointment. I absolutely love my neurologist. So passionate and recognizes that I am a complex case and you cant just fa la la through my symptoms. He said he doesn't think it is from a medication so he has some other things he wants to rule out. (yay! my life)On April 2nd beginning at 1:00pm I will be having a brain MRI, EEG to test for any seizure activity, and an EKG to check on my heart. He is so thorough and with me that is what you HAVE to DO. If all of these are normal we will go back and look at my meds and see what could be doing it and play trial and error. I am thrilled about that one.
I would give specific prayer requests but that is too much so infer from everything about that.
I have been told that more times than I can count as well as doctors saying I am faking things and honestly, once you have been treated that way it always stays with you and in the back of your mind "being crazy" just runs through it in everything. I have gotten to the point where it doesn't stop me from getting treatment like it used too but it is still hanging out back there. So, back to my mental breakdown: I was terrified to know that I would have to go down the stairs in the morning and get in and out of cars and it was all just too much and I was convinced I couldn't do it. My dad caught me in tears in my room because I felt like my body was giving out and I was just scared and couldn't do a thing about it.
My dad just sat there and held me and read bible verses to me until I calmed enough to breathe and talk about everything. This week has been sooo hard for me. I am tired, stressed, weak, fragile, scared, so done and losing hope. My inability to speak correctly has pulled me into an isolated corner because I just can't hold conversations. I can't walk without nearly collapsing, my speech has been stuttered with the occasional wrong word flying out of my mouth. I know what I want to say but the words were not matching up in my brain, facial twitches and complete involuntary movements.
I can't control anything, I like to pretend for most of my life that I can but really It's God's thing. Forever. I just got overwhelmed. My family has it's fair share of health issues and I have to say my dad has kept this house up and running and being there for me for everything. He just kept saying last night as I am in tears and shaking "it's ok. You are not alone, we are here for you and we will get through this. God has performed amazing miracles with you in the past so what makes you think He would give up now?!" My dad is my earthly rock. Dads, regardless of how old your daughter is she still needs to know you will always be there.
Anyways, I calmed down and was able to go to my appointment. I absolutely love my neurologist. So passionate and recognizes that I am a complex case and you cant just fa la la through my symptoms. He said he doesn't think it is from a medication so he has some other things he wants to rule out. (yay! my life)On April 2nd beginning at 1:00pm I will be having a brain MRI, EEG to test for any seizure activity, and an EKG to check on my heart. He is so thorough and with me that is what you HAVE to DO. If all of these are normal we will go back and look at my meds and see what could be doing it and play trial and error. I am thrilled about that one.
I would give specific prayer requests but that is too much so infer from everything about that.
Sunday, March 22, 2015
nervous appointment coming up
Given the course of my life as a whole I know it is surprising to some to hear that I get frustrated by the medical field a lot but not as fearful as one would expect. I tend to just smile and roll through it, knowing God placed me there so that I can get help. God knew what I would face and allowed me to have no fear of the medical field or needles or anything related to medicine.
My tremors and speech issues are really bad tonight and I am scared. I have had brain damage in my past and although this doesn't compare to the seriousness of that one, the reality and memories of that fear and frustration come rushing back and it is scary. I tend to go right on through all of my other issues with frustration but not fear. This is different. I never know when a tremor is going to hit, when my face will twitch,when my hands will drop whatever I am holding because of a lack of grasping ability, when the wrong word is going to come out of my mouth even though I know what I want to say, when I am going to stutter or maybe all three together and it is scary. Brain issues have so many impacts on the body both short term and long term. Pray with me it is short term and they cam come to a diagnosis and treatment in a timely fashion and for peace while I wait. My appointment is 9am on Thursday.
My tremors and speech issues are really bad tonight and I am scared. I have had brain damage in my past and although this doesn't compare to the seriousness of that one, the reality and memories of that fear and frustration come rushing back and it is scary. I tend to go right on through all of my other issues with frustration but not fear. This is different. I never know when a tremor is going to hit, when my face will twitch,when my hands will drop whatever I am holding because of a lack of grasping ability, when the wrong word is going to come out of my mouth even though I know what I want to say, when I am going to stutter or maybe all three together and it is scary. Brain issues have so many impacts on the body both short term and long term. Pray with me it is short term and they cam come to a diagnosis and treatment in a timely fashion and for peace while I wait. My appointment is 9am on Thursday.
Friday, March 20, 2015
No mistakes
I know most of us know think we know that God does not make mistakes. It is the basis for faith. When we as humans face trials we tend to "forget" this fact and get all tangled up in our problems and question God, convinced that He made a mistake by allowing us to go through trials. Don't doubt that at least subconsciously you feel that way. We all do at some point. Have you ever thought that maybe He is allowing you to face hard things in life for a purpose? This song lyric really hit home today as I dread dealing with all my issues.
"I am a broken and fragile me
But I'm where You want me to be"
I don't believe God allows hardship for no reason. There is a reason for everything else so why not that. He wants us in that trial for a purpose, not to get back at you for anything but a reason wrapped in love, grace and mercy even if we have sinned to get there.
"I am a broken and fragile me
But I'm where You want me to be"
I don't believe God allows hardship for no reason. There is a reason for everything else so why not that. He wants us in that trial for a purpose, not to get back at you for anything but a reason wrapped in love, grace and mercy even if we have sinned to get there.
Wednesday, March 18, 2015
blessings
I have been thinking today about how blessed I really am. Yes, I have had my fair share of trials in this life but with trials comes mercy and blessings. My body might be going crazy with a rapid heartbeat, dizziness, tremors, passing out, shortness of breathe, nausea, vomiting, headaches and chest pain confining me to my bed but I am beyond blessed to have parents that can pay for my medical needs, run up and down the stairs bringing me various things, take me to and from so many doctors appointments, and sit 6 hours in the ER with me when my blood pressures go crazy. Not everyone is blessed with that luxury and I am realizing the extent of God's mercy in my life. With every trial comes blessings but you have to take a step back and look for it in order to find it most of the time.
Monday, March 16, 2015
What it means to be "alive"
The last couple of weeks have been exhausting. It has been filled with days spent just barely getting by. I almost passed out and then spent a good 6 hours in the ER just to get a chest x ray and some blood tests done, by the time I got to see the doctor my vitals had mostly stabilized thus making the day feel pointless. I feel trapped in my own body, I am stuck in this state of nervous system failure with no "cure" in site and unless God does a miracle, I think that I will have it forever. God does do miracles and that I know VERY well. Doesn't mean He will heal me but He is the giver of life so He can do whatever He wants.
I am very thankful for this beautiful weather but I have to say it makes the reality of my situation hits me when I think back to when I could go for walks outside, go on vacations, work out, and just everything that I used to love doing in the nice weather. I can't do it anymore. I have been feeling like a vegetable lately. Stuck in my bed and unable to get up makes me feel a little useless, like I am really not a productive member of society. God has been teaching me what being "alive" means; so much more to it than I tend to think. God doesn't look at me and see a vegetated person but He sees my heart and what His plan for my life is. There is a plan! To be alive means so much more than how we tend to box it up into a cute little package and if we aren't doing the 12 things in the package then we are failing and useless. God is showing me that I need to throw away my box and stop sulking in my life circumstances and rest knowing He is God and He is in full control, I am just along for the ride.
I am very thankful for this beautiful weather but I have to say it makes the reality of my situation hits me when I think back to when I could go for walks outside, go on vacations, work out, and just everything that I used to love doing in the nice weather. I can't do it anymore. I have been feeling like a vegetable lately. Stuck in my bed and unable to get up makes me feel a little useless, like I am really not a productive member of society. God has been teaching me what being "alive" means; so much more to it than I tend to think. God doesn't look at me and see a vegetated person but He sees my heart and what His plan for my life is. There is a plan! To be alive means so much more than how we tend to box it up into a cute little package and if we aren't doing the 12 things in the package then we are failing and useless. God is showing me that I need to throw away my box and stop sulking in my life circumstances and rest knowing He is God and He is in full control, I am just along for the ride.
Monday, February 23, 2015
new life
At one point in my life I had my life "planned out" but this disease has a way of taking one thing at a time from you and there is nothing you can do about it. Social life, job, friends, rental house, standing up, walking, driving, diet, and more. There is only one thing that is the same as it was prior to my seizure, God. This new life that I am trying to accept is not an easy one and I am learning how important the fact that God doesn't change in this journey that is filled with things unknown and paths less traveled. I wish I could say that I cling to God and rely on Him for everything but to be honest I struggle with that. Letting go of what I thought my life would look like and surrendering to what God has planned for me instead is not easy. I always thought that by the time I was 24 I would be a stay at home mom, ex-nurse, and living out all the desires of my heart. Perfect little package. I'm 23 now and I am nowhere close to any of this.
I have no clue what God is doing with me and what HIS plan looks like; I know He listens to my hopes, wishes, and desires even if they are not in His plan. Growing up I heard that He grants us the desire of our heart and assumed that since God gave me such a desire for a family of my own and a longing to work in the medical field and help others that my life would look like the scenario above. I realized that maybe I might be taking that wrong when I pondered why my life is what it is today; what if MY version of desires isn't what God means when He says that? He never says that on this earth we will get the "perfect package" that is built off of our wants. He does promise that He will never leave or forsake and for now I am working on accepting my new life and learning how to trust Him no matter what life holds and watching to see what He chooses to do.
I have no clue what God is doing with me and what HIS plan looks like; I know He listens to my hopes, wishes, and desires even if they are not in His plan. Growing up I heard that He grants us the desire of our heart and assumed that since God gave me such a desire for a family of my own and a longing to work in the medical field and help others that my life would look like the scenario above. I realized that maybe I might be taking that wrong when I pondered why my life is what it is today; what if MY version of desires isn't what God means when He says that? He never says that on this earth we will get the "perfect package" that is built off of our wants. He does promise that He will never leave or forsake and for now I am working on accepting my new life and learning how to trust Him no matter what life holds and watching to see what He chooses to do.
Tuesday, February 17, 2015
Reality
I literally thank God that the mind can be distracted. For the most part I really don't think about my situation and I just go through the day to day motions that keep me going. This is a huge blessing in disguise that never really occurred to me until today, I bet you can ask just about everyone with a chronic illness and they will say that the mental toll is so much worse than the physical pain of day to day life. Physical pain will eventually slow or stop at some point bringing much needed relief but mental pain is like the never ending, constant pain tugging on your soul all the time and leaving you broken, exhausted and running to Jesus faster than you ever thought you could. For me, my relief comes in the form of distraction, I can distract my thoughts and re-direct them and forget about how hard life really is.
Distraction doesn't always come, at times God allows me to face my reality for reasons unknown to me but I face it. Today has been one of those days where distraction doesn't come and the full weight of my life and what has changed since December 18th of last year and how hard this has been with no ending in sight. Every aspect of my daily life has been completely switched around and trampled on and the only thing that remains is my savior. I cannot be more thankful that He doesn't change and will always be the constant in my life even when it feels like everything is falling apart and my world is crashing in on me while I sit back and watch it crumble. I really have no idea where my life is going, I can only pray that it does not stay the same. The same is my worst nightmare and so much more than I think I can handle and it is. I can't handle it. I can't handle any of it but I know who can and it is the same One that has been dragging me through "the same" for over a year now. My only hope and peace can be found in Jesus's arms.
I face my reality today and I pray that tomorrow I can go back to distraction land but whatever may come good or bad my God will always be and that is more than enough. That sentence is on a loop in my brain. It is truth amongst all the lies that float around in my non distracted mind. Yes, reality is hard, I don't want to be in this condition, I want to live life and do things that a normal 23 year old would do but that isn't God's plan for me so I have to step back and surrender my version of my life to His plan. Not an easy task, the devil is sneaky and always has been there to plant a bad seed in my brain of how this will be my life forever and I should give up now because it is hard. You would think by now he would realize that he will not win, he may distract me for a time but Jesus will always kick him out. (I just pictured that occurring in my mind and it is quite hilarious)
"Every time that you wake up breathing
Every night when you close your eyes
Every day 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
If you spent your days just getting by
When you feel useless, He can use you
And show you what it means to be alive"-ashes remain here for a reason
My current reality could be forever it is a hard pill to swallow but as the song above says there is still purpose for my life, even if it is spent in a bed with a failing nervous system and each one of my "automatic" systems going crazy for the rest of my days. God takes nothing and makes it something. So, for those of you struggling to face your reality, I am right there with ya but there is room for peace within it all if you open your eyes and heart and search for it even when you have to say with reluctance that God is good all the time because He is and He will prove it time and time again.
Distraction doesn't always come, at times God allows me to face my reality for reasons unknown to me but I face it. Today has been one of those days where distraction doesn't come and the full weight of my life and what has changed since December 18th of last year and how hard this has been with no ending in sight. Every aspect of my daily life has been completely switched around and trampled on and the only thing that remains is my savior. I cannot be more thankful that He doesn't change and will always be the constant in my life even when it feels like everything is falling apart and my world is crashing in on me while I sit back and watch it crumble. I really have no idea where my life is going, I can only pray that it does not stay the same. The same is my worst nightmare and so much more than I think I can handle and it is. I can't handle it. I can't handle any of it but I know who can and it is the same One that has been dragging me through "the same" for over a year now. My only hope and peace can be found in Jesus's arms.
I face my reality today and I pray that tomorrow I can go back to distraction land but whatever may come good or bad my God will always be and that is more than enough. That sentence is on a loop in my brain. It is truth amongst all the lies that float around in my non distracted mind. Yes, reality is hard, I don't want to be in this condition, I want to live life and do things that a normal 23 year old would do but that isn't God's plan for me so I have to step back and surrender my version of my life to His plan. Not an easy task, the devil is sneaky and always has been there to plant a bad seed in my brain of how this will be my life forever and I should give up now because it is hard. You would think by now he would realize that he will not win, he may distract me for a time but Jesus will always kick him out. (I just pictured that occurring in my mind and it is quite hilarious)
"Every time that you wake up breathing
Every night when you close your eyes
Every day 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
If you spent your days just getting by
When you feel useless, He can use you
And show you what it means to be alive"-ashes remain here for a reason
My current reality could be forever it is a hard pill to swallow but as the song above says there is still purpose for my life, even if it is spent in a bed with a failing nervous system and each one of my "automatic" systems going crazy for the rest of my days. God takes nothing and makes it something. So, for those of you struggling to face your reality, I am right there with ya but there is room for peace within it all if you open your eyes and heart and search for it even when you have to say with reluctance that God is good all the time because He is and He will prove it time and time again.
Wednesday, February 11, 2015
faith
Trusting God when the miracle does not come, when the urgent prayer gets no answer, when there is only darkness, this is the kind of faith God values perhaps most often, this is the kind of faith that can be developed and displayed only in the midst of difficult circumstances. This is the kind of faith that cannot be shaken because it is the result of having been shaken already- Nancy Guthrie
This week has been so hard and at times I just want to give up and let my body malfunction and do nothing about it. The central nervous system controls everything which includes the amount of adrenaline it flings around causing my body to go into "fight or flight' mode over absolutely nothing. It ends in panic attacks from so much adrenaline and just all around one of the worst feelings. You literally feel like you are dying. If you have never had a legit panic attack then it is easy to say "well, just stop thinking that way" and other blah blah blah things I tune out. We are not talking a general anxiety here but a full blown attack that leaves me debilitated and unable to even think or move and leaves me in a fetal position in tears for relief.. It is all consuming. Those who have truly felt and gone through this know it stops life in it's tracks. Frozen for no rational reason.
While this horror has basically described my life for the last week and I am wearing out. The attacks have lasted for a minimum of 2 hours but more like 4-6 hours in a fetal position on my bed while trying not to puke. As I am sure you can imagine how hard this week has been considering the above scenario has occurred all day and all week. I came across this quote again and got a good dose of reality check. God is good. All the time.
This week has been so hard and at times I just want to give up and let my body malfunction and do nothing about it. The central nervous system controls everything which includes the amount of adrenaline it flings around causing my body to go into "fight or flight' mode over absolutely nothing. It ends in panic attacks from so much adrenaline and just all around one of the worst feelings. You literally feel like you are dying. If you have never had a legit panic attack then it is easy to say "well, just stop thinking that way" and other blah blah blah things I tune out. We are not talking a general anxiety here but a full blown attack that leaves me debilitated and unable to even think or move and leaves me in a fetal position in tears for relief.. It is all consuming. Those who have truly felt and gone through this know it stops life in it's tracks. Frozen for no rational reason.
While this horror has basically described my life for the last week and I am wearing out. The attacks have lasted for a minimum of 2 hours but more like 4-6 hours in a fetal position on my bed while trying not to puke. As I am sure you can imagine how hard this week has been considering the above scenario has occurred all day and all week. I came across this quote again and got a good dose of reality check. God is good. All the time.
Friday, February 6, 2015
control
I really struggle with trust in Jesus because let's be honest, I don't like not being in control. God is teaching me how to be still and trust that He has it all worked out. I can just sit back and watch it happen but I don't, instead I try to cut Jesus out and do it myself. With this disease I have absolutely no control over any of it's systems and I have had to learn to accept this fact all while knowing it is in my fathers arms. Here is a brief list of the things that should work correctly but don't:
I am accepting I can not do anything to solve the problems that arise in the different systems of my body. I think this is probably the best way that I will learn to trust in Jesus because man cannot cure this and I have nothing. I can't do anything about it when my heart rate is 130 and I can't breathe. There are so many things this controls that I am slowly giving it up to God because I realize how helpless I really am. Jesus created me and if it is His will He will put me back together again but if not I am in the middle of a hard reality check.
Please pray for my trust to be restored and that I will look to Him instead of my frail self. Yes, as I have been told I do have faith in Jesus even through all of this but trust and faith are two very different things and I pray that my trust will be restored and that I can and will let go of all of this with the realization that my savior will work everything out according to His plan.
I am accepting I can not do anything to solve the problems that arise in the different systems of my body. I think this is probably the best way that I will learn to trust in Jesus because man cannot cure this and I have nothing. I can't do anything about it when my heart rate is 130 and I can't breathe. There are so many things this controls that I am slowly giving it up to God because I realize how helpless I really am. Jesus created me and if it is His will He will put me back together again but if not I am in the middle of a hard reality check.
Please pray for my trust to be restored and that I will look to Him instead of my frail self. Yes, as I have been told I do have faith in Jesus even through all of this but trust and faith are two very different things and I pray that my trust will be restored and that I can and will let go of all of this with the realization that my savior will work everything out according to His plan.
Monday, February 2, 2015
fight
I'm just going to be real here, I am tired of this fight. Every day brings this battle to the surface as soon as I wake up and my symptoms start to hit me. Every single day. for over a year. I am so tired of all of it. It has been over a year and I'm still an invalidish. I am working on trusting God with my future; I had made plans and goals for myself but obviously they didn't match up with God's and slowly I am realizing that I will not be able to accomplish them. God is saying no at this point. I have no idea where my life is going and I know God has it and I just need to wait and see but the thought of being an invalid for the rest of my life is beyond what I can comprehend. I am thankful for my savior for taking over when I can't. Today has been one of those days where my current situation hits me hard. I don't want to loose years of my life to being sick again, I don't want any of this. I know that it is not about what I want but what God wants to do in my life and the lives of people around me but it is still a large pill to swallow and I am weak.
I KNOW everything is going to work out according to God's plans so that is where I am pulling my hope and faith from. God was faithful, is faithful, and will always be faithful no matter what my life looks like but pray for peace and trust while I wait on the Lord to guide me in this journey of life because I feel empty and worn down and my faith is slowly being hit hard and I am determined not to loose it and run away from God since I have done that before and it doesn't end very well but I am struggling right now so prayers are appreciated as well as verses and/or words of wisdom.
p.s yes it is a massive run on sentence. Deal with it.
I KNOW everything is going to work out according to God's plans so that is where I am pulling my hope and faith from. God was faithful, is faithful, and will always be faithful no matter what my life looks like but pray for peace and trust while I wait on the Lord to guide me in this journey of life because I feel empty and worn down and my faith is slowly being hit hard and I am determined not to loose it and run away from God since I have done that before and it doesn't end very well but I am struggling right now so prayers are appreciated as well as verses and/or words of wisdom.
p.s yes it is a massive run on sentence. Deal with it.
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