Katie - Chronic Illness
If
I were to tell myself something before this earthly life, knowing what I
know, I would say, “It’s so worth it. There’s so much more. This
earthly experience is so fleeting, but the things you learn will be
invaluable. You will meet people and do things that aren’t possible
anywhere else. This will make you a better person. There will be moments
when you wish you could just come home, but hold on. Talk to the Father, and He will be with you. Relax. It will all work out, and you will be home soon.”
My name is Robyn, I'm a wife and mother of two. I am active in my church, and my relationship with Heavenly Father and Jesus Christ has carried me and IS still carrying me through the trials in my life.
My name is Robyn, I'm a wife and mother of two. I am active in my church, and my relationship with Heavenly Father and Jesus Christ has carried me and IS still carrying me through the trials in my life.
In
2015 we were re branding our business and we hired some people to help
us expand our business. It was a super stressful time with our business
and I was still dealing with a few health issues like the
endometriosis. As a fitness instructor you try to push through things
and get stronger, and I feel like we all have a super mom complex so my
attitude has always been to push through. What doesn't kill you makes you stronger right?
We were going on vacation and I got sick like 2 weeks before and felt so tired, but you can't just cancel family vacation so I pushed through my exhaustion and we went.
I remember getting up one morning and just wanting to go back to bed and we went to the park and my husband took our kids on the roller coaster and I felt super dizzy and tired. We made it to a table over at the wine garden and I just slumped over it and I couldn't move. My brain was going in circles and my muscles were twitching.
I felt like cement, I couldn't lift my arm or my leg and I didn't even realize it had been 2 hours that I had been collapsed like that. Thank goodness my sisters were there and they had taken the kids, and my husband was texting them trying to figure out how to get me home.
They called the paramedics and they came and poked and prodded me and they all thought I was drunk because we were sitting in the wine garden. I could hear everything, but it felt so far away and I couldn't answer. They got me in a wheel chair and took me out to the park and we went back to the hotel.
My family was more worried then I was, I just thought I was tired. My sister got me a flight back home and she came with me and I was so tired I laid down on the airport floor which is disgusting, I'm a total germaphobe, but all I could think of was "I just need to lay down".
We were going on vacation and I got sick like 2 weeks before and felt so tired, but you can't just cancel family vacation so I pushed through my exhaustion and we went.
I remember getting up one morning and just wanting to go back to bed and we went to the park and my husband took our kids on the roller coaster and I felt super dizzy and tired. We made it to a table over at the wine garden and I just slumped over it and I couldn't move. My brain was going in circles and my muscles were twitching.
I felt like cement, I couldn't lift my arm or my leg and I didn't even realize it had been 2 hours that I had been collapsed like that. Thank goodness my sisters were there and they had taken the kids, and my husband was texting them trying to figure out how to get me home.
They called the paramedics and they came and poked and prodded me and they all thought I was drunk because we were sitting in the wine garden. I could hear everything, but it felt so far away and I couldn't answer. They got me in a wheel chair and took me out to the park and we went back to the hotel.
My family was more worried then I was, I just thought I was tired. My sister got me a flight back home and she came with me and I was so tired I laid down on the airport floor which is disgusting, I'm a total germaphobe, but all I could think of was "I just need to lay down".
They
ran a so many tests and they couldn't find anything! I was starting to
have tremors and shakes, I'd go through episodes of not being able to
physically move, but I could hear.
They tried everything, they tried drugs, that didn't work, they tried to send me to the epilepsy lab, negative, they even thought I was a psychiatric patient. Everything was coming out negative. It was so frustrating! I wanted to scream "I'm NOT crazy! I have so much to do I don't have time to be tired!"
I finally got diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome) a year and a half ago which was such a blessing to finally have a diagnoses, but I've been home bound and almost bed ridden ever since.
What happens with POTS affects all the things you don't have to think about, like your breathing, blood flow and your heart rate is just going crazy. For most people when you stand up your blood goes to your feet but your body quickly brings the blood back up. For me when I stand up, or sit up my blood goes down but it has a really hard time coming back up which causes me to have a hard time getting enough oxygen to my brain. I get really brain fogged because of this.
My body also produces a lot of adrenaline and I get overwhelmed really easily. Light, movement, sound, everything is just so overwhelming. When I go out in public I have to wear sound canceling headphones, I go out in a wheelchair and I wear compression sock. I feel so self conscious going out in public.
I had one guy come pat me on the head and slowly say "You're such a pretty girl." And I just thought "I'm not retarded!"
I don't leave the house very often, 1. because it's embarrassing and 2. its a lot of work.
They tried everything, they tried drugs, that didn't work, they tried to send me to the epilepsy lab, negative, they even thought I was a psychiatric patient. Everything was coming out negative. It was so frustrating! I wanted to scream "I'm NOT crazy! I have so much to do I don't have time to be tired!"
I finally got diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome) a year and a half ago which was such a blessing to finally have a diagnoses, but I've been home bound and almost bed ridden ever since.
What happens with POTS affects all the things you don't have to think about, like your breathing, blood flow and your heart rate is just going crazy. For most people when you stand up your blood goes to your feet but your body quickly brings the blood back up. For me when I stand up, or sit up my blood goes down but it has a really hard time coming back up which causes me to have a hard time getting enough oxygen to my brain. I get really brain fogged because of this.
My body also produces a lot of adrenaline and I get overwhelmed really easily. Light, movement, sound, everything is just so overwhelming. When I go out in public I have to wear sound canceling headphones, I go out in a wheelchair and I wear compression sock. I feel so self conscious going out in public.
I had one guy come pat me on the head and slowly say "You're such a pretty girl." And I just thought "I'm not retarded!"
I don't leave the house very often, 1. because it's embarrassing and 2. its a lot of work.
Those
first few months were horrible. I couldn't walk from the bed to the
bathroom without collapsing. I had to have someone come help me to go
to the bathroom. And it was hard because we had just started revamping
my business and what do I do with that?
We all deal with grief and loss in some way and I feel like I went through the stages of grief a few times.
It was almost like someone had died because my life had changed so drastically. We loved to travel, hike and go places as a family, I was working and growing my business and now I can't do anything. Like I can't even have the TV on because its too much commotion.
This last October when I hit my year mark with POTS and I went through another cycle of grieving. The statistics of being healed aren't that great, less then 20% ever heal from POTS. I thought I was going to overcome it, but when I hit my year mark it really hit me that this is long term and probably for life.
My life had become so hollow and empty. This new life was killing me, it was such a lonely place.
We all deal with grief and loss in some way and I feel like I went through the stages of grief a few times.
It was almost like someone had died because my life had changed so drastically. We loved to travel, hike and go places as a family, I was working and growing my business and now I can't do anything. Like I can't even have the TV on because its too much commotion.
This last October when I hit my year mark with POTS and I went through another cycle of grieving. The statistics of being healed aren't that great, less then 20% ever heal from POTS. I thought I was going to overcome it, but when I hit my year mark it really hit me that this is long term and probably for life.
My life had become so hollow and empty. This new life was killing me, it was such a lonely place.
My hope came from Christ. Christ knows exactly what I'm going through.
He is the only one that has felt what I have felt. I don't know how
people and get through hard things without knowing Him. Because when no
one else can help and you hurt so bad you can't even function and you
can't sleep because you're shaking so hard, but you are just so tired,
He's the only one you can turn to and you can turn to Him anytime. Focusing on Jesus, my Savior, has gotten me through this.
I was worried about my business and one day a friend of mine said "You know what? Jesus is really smart. He knows what you need to do with your business." I knew she was right, I prayed and my husband and I decided to descale and just focus on the contracts we had.
My church held a big fast for me last February and I really thought I was going to be miraculously healed..... and I wasn't. But I feel like that fasting helped me in so many ways. One of the things that I had been praying for was for my business, that I would have the strength to manage it and keep it functioning and that I could have time to spend with my kids. It was so hard because all of the sudden I couldn't go to any of their programs or do their hair, or anything. But I feel like that fast helped me with my emotional and spiritual healing.
I was worried about my business and one day a friend of mine said "You know what? Jesus is really smart. He knows what you need to do with your business." I knew she was right, I prayed and my husband and I decided to descale and just focus on the contracts we had.
My church held a big fast for me last February and I really thought I was going to be miraculously healed..... and I wasn't. But I feel like that fasting helped me in so many ways. One of the things that I had been praying for was for my business, that I would have the strength to manage it and keep it functioning and that I could have time to spend with my kids. It was so hard because all of the sudden I couldn't go to any of their programs or do their hair, or anything. But I feel like that fast helped me with my emotional and spiritual healing.
The
idea for this book definitely came from God. When all of this started I
was hurting, but my kids were also hurting. Every night at dinner we
go around the table and say what's our good news and whats our bad news.
And every night I would come to dinner and for months my kids would
all say "My good news is mom made it to dinner, my bad news is I miss
mom." It hurt to hear that because I was sitting right there. But they missed who I was, and I missed who I was.
A year a go I measure a good day if I could do 4 things in a day. And those 4 things might be 1. a shower 2. washing my hair 3. coming out to eat dinner with my family, not make dinner, just sit at the table and eat. After I did 1 thing I would have to rest for 3 hours before I could do the next thing.
I can do more things now after a year, but compared to what I used to be....I'm nowhere near that.
A year a go I measure a good day if I could do 4 things in a day. And those 4 things might be 1. a shower 2. washing my hair 3. coming out to eat dinner with my family, not make dinner, just sit at the table and eat. After I did 1 thing I would have to rest for 3 hours before I could do the next thing.
I can do more things now after a year, but compared to what I used to be....I'm nowhere near that.
I
wrote this book and a dear friend illustrated it for me. This book
starts with all of the things I used to do with my kids and after
becoming sick all of the things I can do with them now.
I wanted something to help explain to them what was going on, but also let them know that they are still loved.
I wanted something to help explain to them what was going on, but also let them know that they are still loved.
I think my kids feel helpless a lot when it comes to me, so one thing I
wrote in the book and tell them all the time is "Hugs make me feel
better." So they hug me a lot.
We called this little guy Huggy Monkey because he has become a proxy for me and my kids. If my kids are having a bad day and I can't be there for my kids to give them hugs, they'll ask to hug him, or sleep with him. I also have him near me when when my kids gone so he can be a proxy for them and give me hugs.
We called this little guy Huggy Monkey because he has become a proxy for me and my kids. If my kids are having a bad day and I can't be there for my kids to give them hugs, they'll ask to hug him, or sleep with him. I also have him near me when when my kids gone so he can be a proxy for them and give me hugs.
There are a few things that I have learned from this trial so far.
1. Focus on what matters most.
There were so many things I worried about and stressed about before that now I realize don't really matter. I mean when you have only 4 things you can do a day you really have to pick THE most important things, and some days showering is the most important because it's been a few days. But I try to spend time with my kids, work on my business, exercise because I know it helps with my condition, but it's hard because I know that if I do this then I can't do that. Like I can only do 4 things. So throw out the extra fluff, especially things you can't control, don't stress about them and focus on what matters.
2. Finding Joy.
Elder Nelson gave a talk about Finding Joy and he talked about how finding joy has less to do with our situation and more about what our focus is in life. I really found that to be true. The first few months were so depressing, but I really found that we can be happy no matter what is going on. This doesn't mean I'm happy every day all the time, but there are so many things that we can find joy in. Like finding joy when I get snuggle time with my kids or make it outside, or that the sun is shining. There is joy and happiness to found everyday no matter what is going on around us.
3. Have more Empathy for others
Going through this experience has helped me have empathy for people. I've realized everyone has trials and struggles and they are all different. I am sick, but I have an amazing and supportive husband and my kids are so sweet. I know there are people who has dysfunctional marriages, or stresses with children or other trials that I don't have.
People will say to me "Oh I don't have any room to complain because of the situation you're in." But its not a competition of who has the worst problems, we all experience hardships in our life. We are all here to love and uplift each other.
1. Focus on what matters most.
There were so many things I worried about and stressed about before that now I realize don't really matter. I mean when you have only 4 things you can do a day you really have to pick THE most important things, and some days showering is the most important because it's been a few days. But I try to spend time with my kids, work on my business, exercise because I know it helps with my condition, but it's hard because I know that if I do this then I can't do that. Like I can only do 4 things. So throw out the extra fluff, especially things you can't control, don't stress about them and focus on what matters.
2. Finding Joy.
Elder Nelson gave a talk about Finding Joy and he talked about how finding joy has less to do with our situation and more about what our focus is in life. I really found that to be true. The first few months were so depressing, but I really found that we can be happy no matter what is going on. This doesn't mean I'm happy every day all the time, but there are so many things that we can find joy in. Like finding joy when I get snuggle time with my kids or make it outside, or that the sun is shining. There is joy and happiness to found everyday no matter what is going on around us.
3. Have more Empathy for others
Going through this experience has helped me have empathy for people. I've realized everyone has trials and struggles and they are all different. I am sick, but I have an amazing and supportive husband and my kids are so sweet. I know there are people who has dysfunctional marriages, or stresses with children or other trials that I don't have.
People will say to me "Oh I don't have any room to complain because of the situation you're in." But its not a competition of who has the worst problems, we all experience hardships in our life. We are all here to love and uplift each other.
I (Stephanie Bagley) wanted to share Katie's link for her book and blog. Katie sells her book on Amazon and all the proceeds from this book will be donated to Dysautonomia International to help fund the research and advocacy of disautonomic disorders.
You can purchase her book at:
http://buff.ly/2s6OGsN
Or you can follow her blog at:
http://buff.ly/2s7kVYP
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