Well This week, my new primary care doctor put me on a new blood pressure medication and so now I will NEVER have to be on Potassium pills with this new med, and this medication actually will help increase my potassium level, which I'm always struggling to keep up due to diarrhea and mal-absorption because of Crohn's. He isn't putting me on anything for my heart rate because he believes my heart rate stays high due to my chronic intestinal pain due to Crohn's Disease and he hopes that my GI doctor will be able to get my Crohn's pains under control so my body isn't in so much distress.
However speaking of diarrhea, today has been the worst day I've had in 4 days! Literally it looks like I have taken the prep for a colonoscopy, I'm not absorbing anything I've eaten over the past 24 hours and I'm pooing straight water diarrhea, so far today I've had 5 hits of that and my poor bum is screaming in pain and bleeding. Needless to say, I have done nothing but sit in my chair, sit on the toilet, or lie in bed waiting for this horrible rollercoaster ride to stop.
I'm just praying tomorrow will be better, because my dad and his fiance' are coming over for the evening so I can help them print up some invitations for their wedding in October.
Next week is going to be VERY busy. Next Tuesday I'm returning to my colon/rectal surgeon so he can examine me and maybe figure out why I keep bleeding from my rectum when he told me that the rectal bleeding should have stopped 2 months after my surgery. Well, it's been 4 months since my surgery and I'm still bleeding and I know it's partly due to the Crohn's and the diarrhea, but I'm having blood running out of me randomly and even passing small blood clots at times, even if I don't have a bowel movement! Yeah that scares me and everyone else when this happens.
Then on Friday I go to my Grandma's house for the day to do laundry and spend the day with her and my Grandpa
But Saturday is my REALLY BIG DAY!!! I'M BEYOND EXCITED OVER THIS!!!
NEXT SATURDAY AUGUST 30, 2014 WILL FOR EVER LIVE IN INFAMY FOR ME! BECAUSE I GET TO SEE "THE WIZARD OF OZ" MOVIE IN A MOVIE THEATER FOR THE FIRST TIME IN MY LIFE!!!!!!
The Wizard Of Oz is my favorite movie and I'm a fanatic over it and the Oz books! Our local Historic Theater is showing it Only One Time!!! So my mom, Jeremy and I are extremely lucky we got tickets, and truly the reason we got them was because I have a friend who works for our local Chamber Of Commerce and she had the inside info on this event and the moment she found out they were showing the movie, she immediately thought of me and wrote me about the event. So the day the tickets went on sale was the day I got mine. And the tickets are only 5 dollars a person!!!
We already have a game plan of getting me to the theater and where to sit so if I do get sick during the movie we can get me to a bathroom easily. The plan is to sit all the way in the back of the theater in the last row closest to the doors so if we have to make a quick exit no one will be in our way. I'm praying I have the best day ever with this disease and NOTHING stops me from having this once in a lifetime chance to see this movie as it was viewed back in 1939 when it first came out.
We are already planning to shoot a video of us going to see the movie and taking LOTS of pictures. I'm hoping to possibly find some costumes for us to wear because they are encouraging people to dress up and they are having a costume contest!!!
I can't wait to share with everyone, all my friends are so excited I get to go because they know how little I do get to go out and of course they all know I'm an Oz fanatic. I've told my family, that when I die this will be one of the main thing I will always be remembered for "That Miranda Caverley, I remember how, she loved the Wizard Of Oz" I think that is a pretty awesome thing to be remembered for.
I'll be writing again next week as I find out the results from the surgeon appointment and of course I'll be sharing those pics from the Wizard Of Oz event!
Thursday, August 21, 2014
My Dad Is Getting Married!!!
So I have some great news!
My Dad is getting married on October 4, 2014! And I could not be more happier for him, He is marrying an amazing woman named Diane who my dad and his parents have known since she was a little girl when her parents attended a church my Grandpa was the pastor of back in the 60's. And now all these years later, Diane starts coming to the church my Grandparents and my husband and I attend and my dad came a few Sundays to our church and they met and immediately liked each other. Now just a few months later, they are engaged and preparing for their wedding.
I have not seen my dad this happy in decades let's just say, and Diane is to me another Mom NOT my step mother. She is so loving and caring and has truly brought the best out of my dad, I haven't seen this side of my dad since I was little and I'm 33 years old now! Even my husband Jeremy calls her Mom when we spend time together, Jeremy says Diane reminds him so much of him mom (Jeremy's mother died in 2000) when he was little, and before his mom began drinking and using drugs. Jeremy tells me it's as if God has given him his mom back in a way, and Diane loves Jeremy and me like we are her own children.
My Grandparents are just as excited to see my dad and Diane together. My Grandma says it is an answer to her prayers so that if/when she and my grandpa pass away my dad won't be left alone. My Grandparent's healths are declining, especially my Grandpa's, and we don't know how many more years we will have with him. They both are 76 years old. My Grandma told me today, that one of two of her prayers have been answered, and now God just has to answer the other.....That I be healed from Crohn's disease before she dies. She says she just can't deal with the thought of leaving me here on earth to suffer with this disease and she not be here to help me through these bad days the disease puts me through. I'm holding on to her prayer and know that God will heal me one day whether I stay here on earth or whether I go on to heaven I'm a winner either way and I will be healed.
Jeremy and I will be doing the video and photos of the wedding and our whole church is helping put the whole thing together. Our pastor's wife volunteered to make the cake! And the ladies of the church have decided to put on the reception!! I can not express how much I love the people of my church, they are such loving and giving people.
So that is my good news and I guess the end of this update since it is so long. I'll make this subject it's own post and write another one to share about all the other things that have happened this week and getting ready to happen next week.
But let us pray that God allow me to have a good day so I can help with the wedding and help capture this special moment in my family's life.
My Dad is getting married on October 4, 2014! And I could not be more happier for him, He is marrying an amazing woman named Diane who my dad and his parents have known since she was a little girl when her parents attended a church my Grandpa was the pastor of back in the 60's. And now all these years later, Diane starts coming to the church my Grandparents and my husband and I attend and my dad came a few Sundays to our church and they met and immediately liked each other. Now just a few months later, they are engaged and preparing for their wedding.
I have not seen my dad this happy in decades let's just say, and Diane is to me another Mom NOT my step mother. She is so loving and caring and has truly brought the best out of my dad, I haven't seen this side of my dad since I was little and I'm 33 years old now! Even my husband Jeremy calls her Mom when we spend time together, Jeremy says Diane reminds him so much of him mom (Jeremy's mother died in 2000) when he was little, and before his mom began drinking and using drugs. Jeremy tells me it's as if God has given him his mom back in a way, and Diane loves Jeremy and me like we are her own children.
My Grandparents are just as excited to see my dad and Diane together. My Grandma says it is an answer to her prayers so that if/when she and my grandpa pass away my dad won't be left alone. My Grandparent's healths are declining, especially my Grandpa's, and we don't know how many more years we will have with him. They both are 76 years old. My Grandma told me today, that one of two of her prayers have been answered, and now God just has to answer the other.....That I be healed from Crohn's disease before she dies. She says she just can't deal with the thought of leaving me here on earth to suffer with this disease and she not be here to help me through these bad days the disease puts me through. I'm holding on to her prayer and know that God will heal me one day whether I stay here on earth or whether I go on to heaven I'm a winner either way and I will be healed.
Jeremy and I will be doing the video and photos of the wedding and our whole church is helping put the whole thing together. Our pastor's wife volunteered to make the cake! And the ladies of the church have decided to put on the reception!! I can not express how much I love the people of my church, they are such loving and giving people.
So that is my good news and I guess the end of this update since it is so long. I'll make this subject it's own post and write another one to share about all the other things that have happened this week and getting ready to happen next week.
But let us pray that God allow me to have a good day so I can help with the wedding and help capture this special moment in my family's life.
Tuesday, August 12, 2014
Laugh Out Loud Funny! 29 Things Only Someone With Crohn's Would Understand
I found this on Healthline.com and laughed so hard I nearly pooed my pants because it is sooooooo true.
29 Things Only Someone with Crohn’s Would Understand
1. Baby wipes aren’t just for babies.
2. It’s possible to clog a toilet bowl without paper.
3. “Fast food” describes the speed at which it will come out of your butt.
4. Italian food puts a hit on your small intestine.
5. Public restroom, private nightmare.
6. It’s wise to only purchase brown or black underwear.
7. Matches burn away shame.
8. Sometimes you’re on so many meds that the pills are a meal on their own.
9. Remicade is for readers.
10. When you obstruct, you understand the pain of childbirth.
11. There are many ways to prep an H.
12. If they love you despite the smells that come out of your butt, they’re the one.
13. Your colon is a cave of mysteries. Be prepared for spelunkers.
14. Barium is like a McDonald’s vanilla shake, except without the flavor or the happy.
15. Small talk is largely annoying during a colonoscopy.
16. We find bathrooms the way Indiana Jones finds treasure.
17. Solid poo means it’s going to be a good day.
18. The more ingredients it contains, the more reasons you have not to eat it.
19. Great outdoors, awful bathrooms.
20. Aisle seat, dude. Aisle seat.
21. Steroids make your muscles bigger, mostly the ones in your face.
22. Obstruction + salad = the opposite of healthy.
23. Speeding tickets can be less costly than dry cleaning tickets.
24. Mike McCready is a rockstar for a whooooooole different reason.
25. Mexican food makes you run for the border of the nearest toilet.
26. If Gandalf had Crohn’s and encountered popcorn, he’d yell, “You shall not pass!”
27. Drinking to forget your pain will only make you remember your Crohn’s.
28. IBD is worth it just to get out of jury duty.
29. Crohn’s makes people interesting, deep, intelligent, and cool.
"Winter's Tale" Is My New Favorite Movie To Watch When I'm Really Sick
The Plot of Winter's Tale Is....
Every person on this earth holds within them a Miracle that is meant for only one person, and before we die we must share that miracle with the one person it is meant for, and only then can we go up into the sky and become stars. But be warned for as we draw closer to accomplishing our miracle the devil and his demons are out to stop us, but at the same time God (or as they call it the "universe") steps in to help us accomplish our miracle. And neither time nor space can stop our miracles.
This movie is not biblical based it is a fairytale/fantasy, but when fighting a life long incurable disease sometimes you need a bit of fantasy to escape from the terrible reality we face.
But at the same time, when we know Jesus as our personal Savior and he saves us from our sins we are a walking miracle and even through death we experience a miracle....heaven, eternal life, where there is no more disease and death and we can live forever.
And I literally watch this movie once a day when the Crohn's Disease has
me knocked flat on my back and I need a miracle from God to take away
my pain because there is no cure for it. Sometimes we need a fairytale to help us through the day. I hope you get to watch this movie and it helps you believe that God still works Miracles even today.
Every person on this earth holds within them a Miracle that is meant for only one person, and before we die we must share that miracle with the one person it is meant for, and only then can we go up into the sky and become stars. But be warned for as we draw closer to accomplishing our miracle the devil and his demons are out to stop us, but at the same time God (or as they call it the "universe") steps in to help us accomplish our miracle. And neither time nor space can stop our miracles.
This movie is not biblical based it is a fairytale/fantasy, but when fighting a life long incurable disease sometimes you need a bit of fantasy to escape from the terrible reality we face.
But at the same time, when we know Jesus as our personal Savior and he saves us from our sins we are a walking miracle and even through death we experience a miracle....heaven, eternal life, where there is no more disease and death and we can live forever.
And I literally watch this movie once a day when the Crohn's Disease has
me knocked flat on my back and I need a miracle from God to take away
my pain because there is no cure for it. Sometimes we need a fairytale to help us through the day. I hope you get to watch this movie and it helps you believe that God still works Miracles even today.
Sunday, August 10, 2014
Too Sick and Weak To Go To Church And It's Driving Me Mad
To
say that I'm upset about not being well enough to go back to church and
just enjoy being in church and the fellowship of my brothers and sisters
over the past month, is an understatement.
My body is continuing to fight me tooth n nail right now, if i attempt playing my drums and getting my heart rate up i feel like I'm having a heart attack because my heart rate is so out of control I cannot get it below 103 bpm when I am awake and only when I sleep do i get my heart to go down to the upper 90's.
The good news is my new primary care doctor is aware of this and he is going to be getting me on some new meds to try and help my pain which is the main cause for my high heart rate or putting on a med to control my heart rate.
This whole weekend i have been completely exhausted to the point that my friend who came over today for a quick visit, took one look at me said, "Miranda you need to go to bed you look really tired" she knows me way too well I can't fool my Mama Dawn no matter how hard I try. So that is exactly what i did when she left and have been there all day.
So yeah I'm mad as heck because I have no strength and can't find the strength to climb out of this bed, take a shower, put on nice clothes, pack my drums and go to church. And I feel like I'm worthless because I can't go out and do ministry and fellowship with my brothers and sisters
My body is continuing to fight me tooth n nail right now, if i attempt playing my drums and getting my heart rate up i feel like I'm having a heart attack because my heart rate is so out of control I cannot get it below 103 bpm when I am awake and only when I sleep do i get my heart to go down to the upper 90's.
The good news is my new primary care doctor is aware of this and he is going to be getting me on some new meds to try and help my pain which is the main cause for my high heart rate or putting on a med to control my heart rate.
This whole weekend i have been completely exhausted to the point that my friend who came over today for a quick visit, took one look at me said, "Miranda you need to go to bed you look really tired" she knows me way too well I can't fool my Mama Dawn no matter how hard I try. So that is exactly what i did when she left and have been there all day.
So yeah I'm mad as heck because I have no strength and can't find the strength to climb out of this bed, take a shower, put on nice clothes, pack my drums and go to church. And I feel like I'm worthless because I can't go out and do ministry and fellowship with my brothers and sisters
Thursday, August 7, 2014
New Doctor Means New Plan Of Action To Battle The Side Effects Of Crohn's Disease
I'm
finally back home after my 2 days stay with my Grandma and Poppy's. My
first appointment with my new primary care physician went extremely
well. He knew what Crohn's disease is and even what he had to keep an eye
on. And he even said he would be working together with my GI doctor
because all my health problems that he has to manage are side effects
due to Crohn's disease and or side effects from the
medications I'm on due to Crohn's. I was at the doctor's office for 3
hours!!! I never had a doctor take this much time with me in my entire
life. I'm not the kind of patient you can just see for 10-15 minutes
and then rush me out the door. The nurses and office staff were shocked
at how sick i am being so young, they were clearly affected let's just
put it that way.
The doctor talked with me for 30 minutes or longer reviewing my monstrous pile of medical records that I have accumulated in just 4 years. He was overwhelmed to say the least with all the paper work on me. But he has a plan and is going to be running regular blood work on me every 3-6 months as needed to check my levels that the GI doctor won't normally check. So I get to have double the blood work done every few months between the 2 doctors, but that is ok, I'm so use to it it doesn't bother me. Thank God I was never scared of needles or blood.
So the plan right now is to keep me on the same meds my old primary care doctor had me on and we are waiting for the blood work results to see if he can change my heart/blood pressure meds and if I need to be on any prescription strength vitamins/minerals due to malnutrition/malabsorption because of Crohn's.
Yeah sometimes I actually get malnourished even though I'm over weight. The weight is due to the steroids not because I eat too much. I don't eat enough and or enough of the right kinds of food because my body rejects it. I told a lady yesterday, that if I didn't have to eat I wouldn't because food=pain and the longer I can go without eating the less pain i am in. The funny thing is, every time i go to the doctor since i was first put on steroids 2 years ago i can never lose this weight but i never gain anymore which i am so thankful for, but even though the scales say no weight loss all my jeans are too big for me now, i'll take losing the inches at least i'm losing something. The doctors don't get on me too much about my weight because they know i'm not doing it to myself, they know it's the meds they have prescribed. And they clearly see i'm not gaining anymore so that to them is fantastic that i have not gained a pound it nearly 3 years.
So, to see how many inches I have lost on my waist, I put on a pair of old jeans I have not been able to fit into in 3 years since I was first put on steroids. And amazingly, they fit perfectly!!! I now have 6 pairs of pant/capris that are too big for me and have to be put back in storage....hopefully forever!!
And for the next week I am to keep track of my heart rate because I am not on anything for it and my heart rate goes sky high a lot due to Crohn's pain and it feels like my chest is going to explode sometimes. And in a week call him back with the results and if my heart rate is still a problem then he will put me back on medication for that.
The doctor talked with me for 30 minutes or longer reviewing my monstrous pile of medical records that I have accumulated in just 4 years. He was overwhelmed to say the least with all the paper work on me. But he has a plan and is going to be running regular blood work on me every 3-6 months as needed to check my levels that the GI doctor won't normally check. So I get to have double the blood work done every few months between the 2 doctors, but that is ok, I'm so use to it it doesn't bother me. Thank God I was never scared of needles or blood.
So the plan right now is to keep me on the same meds my old primary care doctor had me on and we are waiting for the blood work results to see if he can change my heart/blood pressure meds and if I need to be on any prescription strength vitamins/minerals due to malnutrition/malabsorption because of Crohn's.
Yeah sometimes I actually get malnourished even though I'm over weight. The weight is due to the steroids not because I eat too much. I don't eat enough and or enough of the right kinds of food because my body rejects it. I told a lady yesterday, that if I didn't have to eat I wouldn't because food=pain and the longer I can go without eating the less pain i am in. The funny thing is, every time i go to the doctor since i was first put on steroids 2 years ago i can never lose this weight but i never gain anymore which i am so thankful for, but even though the scales say no weight loss all my jeans are too big for me now, i'll take losing the inches at least i'm losing something. The doctors don't get on me too much about my weight because they know i'm not doing it to myself, they know it's the meds they have prescribed. And they clearly see i'm not gaining anymore so that to them is fantastic that i have not gained a pound it nearly 3 years.
So, to see how many inches I have lost on my waist, I put on a pair of old jeans I have not been able to fit into in 3 years since I was first put on steroids. And amazingly, they fit perfectly!!! I now have 6 pairs of pant/capris that are too big for me and have to be put back in storage....hopefully forever!!
And for the next week I am to keep track of my heart rate because I am not on anything for it and my heart rate goes sky high a lot due to Crohn's pain and it feels like my chest is going to explode sometimes. And in a week call him back with the results and if my heart rate is still a problem then he will put me back on medication for that.
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