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 :)
God's free hope in the chaos of life's trials
Monday, June 29, 2015
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.
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