Living with Gastroparesis

Butterflies are the “unofficial” representation of the death of a loved one – sort of like angels. People die and shed the pain and other problems to become a butterfly – just like the real ones do. Especially those of children. They become our protectors, offering comfort and strength when we need it most. They are our cheerleaders and help guide us through our lives.

I have been particularly close to a few kiddos. I follow their stories through Facebook. They use fanpages to ask for help, guidance, prayers and to simply share their story and increase awareness.

This kid has gone through more things than 100 would in a single lifetime. He was the sweetest kid and I was there up until the early morning constantly refreshing my page for updates from the family when Eli unexpectedly went septic and in the end, it was too much. Stunned. No words. I always remember him. They called him tiny man. He is one of my butterflies.

Zach is now another one. My brother passed early; I was only one at the time, but I never leave him out. Another is Karen. She was my best friend I lost just a few weeks ago. If you remember. I’ve made so many videos; never thought I’d be making her final one to be shown at her celebration of life.

My last butterfly is my cousin. She died in a rollover accident almost taking her child with her. Luckily they were able to do an emergency c-section and get the baby out before my cousin died. The baby was far from ready to come, but she pulled through. I like to remember them. Always.

They teach us things we could never learn on our own and I feel sorry for those who aren’t exposed to people like them; “them” being those who are handicapped, chronically sick, with lives full of obstacles. It is through them, that we learn about ourselves and have the chance to make ourselves better.

I wanted to show you my butterflies that just came in. Nearly died putting them up. Victor didn’t like to hear that. Luckily I made it through yesterday with no signs of internal bleeding lol. Seriously, his chair broke my fall. It is a lot longer of a fall than I remember!

Pink – my cousin, Purple – Eli, Blue – my brother, Green – Zach, Yellow (she’s always been yellow) – Karen.

Of course I can’t forget the ones still fighting. There are so many and all pure angels. My buddy Ari has had it rough with open heart surgeries, including two surgeries in utero. He has another coming up in May as the valve isn’t quite right. You can read up about his crazy journey here: Echo of Hope. He’s a little buddy of mine I like to watch grow up. He’s my internet nephew and a handsome one at that!

These kids and their families are heroes. Every day is a battle but that’s life. I just wanted to share a little bit of the amazing people I fight with. If they can do it, I can do it. Our battles may be different and our ages may be years apart, but we fight together and for that, we are stronger.

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I don’t normally do this but this sweeter than life lady was so woven into every fabric of my life and those of her friends both with illness and without, I wanted to do what I could to make her wishes known.

A great GP sister and one of my most cherished and best friend (her handle on the original GP forum) lost her fight from complications due to GP and diabetes. An event has been created on Facebook in her honor, as she would want it to be – Pay it Forward (for Karen). She also has a board set up by her funeral home where people may offer comfort or share memories. You can find that page here: Karen Marie Simons.

Her and her family prepared for this day, they knew would come. She has been resuscitated too times to mention and she never seemed to bounce back. I think, after talking with her husband, during the last few years she never caught up to be who she used to be. It has been hard but she ultimately won. I know she will be our precious angel comforting all of us as we go through what we know will be an extremely difficult time; experiencing feelings words couldn’t even begin to describe. Know I am here should you need help.

*Also – if you have pictures of her, her husband requests you either send him the pictures so he can send them to me, or you can just PM them to me, directly.* It would be greatly appreciated as we celebrate her life. Below is a copy of her wishes as written by her husband. Please follow them. If you need help getting the organizations she claimed as her favorite charities, the donations you wish to offer, let me know. We can get something worked out. I know myself, without talking much to Victor, was to adopt a kitten from her charity. I think she’d like to see that. It is hard and sometimes all we need to do is talk. Just need someone to listen and for any of you needing that help, I’m here. Always.

Share this everywhere you can. I want to make her wishes true and for her to see all effort done because of her wonderful, sweet life. Thank you.

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* Karen’s wish was no flowers she wants Mason county Kitten rescue and diabetes to benefit. (Shelters are always in need of food, toys, beds, etc., even if you are unable to actually adopt a pet) Let others know and and let it go viral. This was her wish. I thank you for your prayers.*
Miles (her husband)

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Today is one of those days that I want to give up and give in. I’ve done everything I can while doing everything asked of me (by medical professionals, family and friends) and yet, I experience roadblocks I just can’t clear. Even when I have someone trying to help, they are cut off. I feel like a prisoner within the walls of my home and broken body. When someone sneaks something through the bars, they are quickly identified, removed and banished. I have no where else to turn. No where else to go. I’ve tried hard to push for different treatments, medications and procedures. I’ve done everything else, what is one more? And if it helps to any degree, is it not worth it? With every setback and lack of positive progression, the balance of risk continually weighs heavier on my side.

I try to put up a brave front. I try to go through all of this with a positive outlook. I go into everything believing it will work, not just hoping. I put on a smile, trying to shutout the extreme pain and hardships I experience every single second of every minute of every hour of every day. Does that smile make people think that I’m OK? Does my outward appearance somehow convey the turmoil I feel inside? Maybe. And maybe I created that connection because most of the time, I don’t want people to know. I don’t want them to see me as weak, whiny and exaggerated. I’d rather be in control, even though I know the reality is the opposite.

My focus is on the here and now. I am not afforded the luxury of looking towards the future because everything is too uncertain. At least, I’ve been told that much. Not just by my doctors, but by family as well. You never really think of dying. It isn’t common practice to see your life in any other way than continuing on. Sure, you may live in the present but you plan for the future. To be perfectly and utterly clear, I do not want to die. And I don’t want others planning on me dying prematurely either. It isn’t even their right to do such a thing. If I’m still doing things to try and get better (even if you don’t agree with them), then who are you to take away my belief that one day I might be better and I might achieve goals I once had?

To say I’m frustrated and tired would be an enormous understatement. I’m not entirely sure where I’m going from here but know that the next few days are crucial to my future. My only hope is that they make my life a little easier, a little better and a little more clear. Only time will tell; hopefully it doesn’t take too much time.

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I’ve been putting this video together for awhile now. It isn’t so much of an awareness video, as all the others have been; it is more of a “documentary” video. I made it to help those that I meet, to give them an understanding of my whole story; not just the small time-frame or situation they may find me in. I had some issues getting it to show up as a public video, so I re-uploaded it and it seems to be working now. Thanks to everyone for inspiration!

I hope everyone is having a good tummy night and that we get to start out the week feeling better than most.

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Well, looks like you guys are stuck with me for awhile yet. Suddenly and unexpectedly on Monday morning, I went into septic shock shortly after entering the ER for simply feeling “off.” I know my body. I know when something is or will be wrong. And sure as rain, it happened. I ended up with an admit to the ER with a temp of 101.8. No idea I had a temp. But from there it went from 0 to 100 in a matter of minutes. My BP tanked to 70/30, my temp skyrocketed to 104.8 with a heart rate of 170. My heart was beating so fast to keep up my failing blood pressure without the circulating blood required. I was shaking out of control, so much it hurt every part of my body. The ER worked ALL day, literally, all day, to get me stable enough to get me up to my room in the ICU. They even moved my ER room to one right next to the nurses’s station because my condition was so unstable and unknown.

No one thought I was going to be leaving the ER that day. Family was being called, special doctors were talking to me about life support and other life saving measures. I found out that none of my veins are usable anymore and for the first time, requiring ultrasound to find a vein usable as a PIV (at the time they didn’t know if my port was the culprit). It was the first time I also required a blood transfusion. That all coupled with massive amounts of fluid (They weighed me and I gained 15 pounds…I don’t eat…of just fluid), I was able to slowly over about 36 hours, get my blood pressure above 90. Only then would they allow pain medication. I was not happy with either of those things. So for the first few days in ICU, I was not pain-free.

For the first time, out of all close calls, I was scared. I wasn’t prepared (no one is but there are things you can do), I was alone and I didn’t know what was happening or how it even got to that point. I was just released not a few weeks ago from surgery in-patient for 7 days. But the ER team kept me focused even when I totally freaked out on them. I couldn’t be more grateful to the ER nurse assigned to my room for sticking with me and getting me through the roughest part of the whole “experience.” She knows who she is – seriously, thank you. Anyway, I was burning up so bad that the leads monitoring my heart, oxygen levels and blood pressure, didn’t stick. They had to re-enforce them with tape, tape and more tape. They kept me comfortable, listened and explained everything. They did all the testing necessary and after the results from the CT scans of basically my whole body, came in – I was moved up to ICU.

I stayed in ICU for only a few days. I had some wonderful and helpful visitors from my church. The turn around I made amazed even the physicians and staff who were working with me. I want to attribute that to faith. Faith I had in my doctors, staff, friends, church members and anyone else who kept me in their thoughts under whatever practice they use. I shouldn’t have made it, and it shouldn’t have gone from near death to walking around within days and a discharge in 4. It was the worst I’ve been but the fastest I’ve gotten through it.

For those wondering: it turned out to be intestinal bacteria (normally found there, good bacteria) that somehow hitched a ride out of my intestine and into my blood. It happened the same way last time so now I know, no matter what I do to keep things sterile, clean and safe, I can’t prevent these random attacks. Coming to terms with that has helped me relax a bit and accept it. Some things happen, and sometimes, there isn’t anything you could have done to prevent it.

If you knew this was happening via my personal page and sent messages of hope and healing, I thank you. I read them all but at the time was too sick to respond. This won’t be my first close call or my last, but for now – I’m feeling much better. Hope everything is going well for you all, and that you are having happier tummy days.

Finally out of the ER and up in ICU – my usual room, as you can see. For those wondering, the little monitor to the left of the TV is for continual monitoring throughout all Swedish systems and also used for conferences.

Obligatory balloons from my husband

Back on the floor, out of ICU!

Home!

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