Miranda Writes

In Remission, But Still Struggling

2012-03-09T12:01:00.002-08:00

3 weeks ago I got the results back from my latest blood test to see how good or bad my Crohn's was.....the results showed that my white blood cell count was normal and that I am in remission.

However, due to having Gastroparesis on top of the Crohn's, I continue to struggle daily with stomach pains, nausea, and diarrhea.

Last weekend however, I was well enough to go and help Jeremy as he spoke at the Delivering Hope Rally to raise awareness about homelessness and poverty. We had a table for JMC Ministries and handed out lots of Free stuff. But sadly it seemed many people showed up to criticize and instead of support us. One person took a copy of our Music Demo CD listened to it then came back and told Jeremy that the music was good, but we were not good enough to win American Idol! Then another person came up at the end of the event after Jeremy spoke and shared his testimony of being homeless and how God helped him through and how he and I started JMC Ministries. This person after taking one of our brochures was very critical of us and kept asking questions that were already answered if they had just read the brochure.

These people were suppose to be Christians but acted anything but....some friends of ours who were there helping at our table saw and heard how we were treated and were very upset that people would be that rude....However, I told our friends that after 30 years of abuse like that from people from around this area, I've grown to expect it and that if someone was Not disrespectful or mean when we went to do Ministry in this area i would think something was wrong.

As I have said many times, Jeremy and I don't have to make people look bad...Because they just open their mouths and place their foot in it and makes themselves look bad on their own, they don't need any help from us.

However, I will say that the event was a success despite the mean people, and Jeremy has already been asked to speak at a church in Portsmouth Ohio next month for another event. This one will be about the drug epidemic that has hit our area of Ohio and how Jeremy is helping people with Drug addictions through a facebook group called Straight Forward...To Help Victims Of Pill Addiction.

Just because Satan puts people in your way to attack you and discourage you doesn't mean you stop doing what God has called you to do. We have more people saying that we are doing great work for the Lord than we do saying we are bad people and not good enough to win American Idol.

Now lets come to the present....

Yesterday i could tell something was not right with my body...I was extremely fatigued and tired. I slept most of the day and then last night it hit...

Out of no where I had severe intestinal pains hit me and even went into my back. I was screaming out in pain. jeremy had to get medicine to help stop the pain and got me to bed. But sleep never came.

All night I tossed and turned in my sleep and cried out in pain. Then today the pain has continued even after taking all the medicine I can to help. And every time I go to the bathroom I hurt so bad having a bowel movement I cry.

It seems my Crohn's is not in remission any longer....I have not felt this bad in over a month and have not had pain in my abdomen and intestines either. So today I'm bed ridden, watching Anne Of Green Gables Movies and trying to continue to do Ministry work from the bed.

My prayer is that this is not a full fledged flare up (how many f words was that? Wow) and that it is only a minor one and will not last long. I'm trying to stay calm and not get upset because that can cause the Crohn's to act up more, but it's hard and especially seeing my husband staying up until 5 a.m. in the morning to watch over me praying and begging God to ease my suffering. It just brings me to tears every time...even now as I write this.

I still don't know why I have to suffer, but as Joni Ereckson Tada said about her swimming accident that left her paralized for the rest of her life...."if one person comes to Christ through this accident, then the wheelchair will be worth it all." All i can say is I hope the same for the Crohn's, Gastroparesis and Auto Immune Deficiency Disorder I fight every day.

The 6 Month Wait......Happy Valentines Day

2012-02-17T12:16:00.000-08:00

Since I last wrote nearly a Month ago, my health in some ways has improved, and in other ways it has not.

I'm still running to the bathroom 8-10 times a day on a regular basis, still struggling with vomiting at least 2 days a week. However, I do seem to be having a little more energy than I use to have. I'm spending more days out of bed than in bed. I'm not having extreme pain as often, but I'm still having pain nearly every day but it is manageable with my pain meds and also some new bath stuff and pain relieving lotions, and pain patches Jeremy bought me. But there are still days every now and then that the extreme pain hits and I'm in bed all day. But I'm so thankful that those days are much fewer and farther in between.

Yesterday was the first time in 2 years that I was able to a movie theater and see a movie. I did start to get fatigued and my body started to ache but Jeremy just put his arm around me held me and rubbed my shoulders and neck during the movie and it helped. We went and saw the Vow, it was honestly one of the most heart wrenching movies Jeremy and I have ever seen together....The reason? Because it was as if we were watching ourselves every emotion and struggle that couple went through to try and stay together and keep their marriage intact is exactly what Jeremy and I have been going through.

These diseases that have attacked my body have nearly broken the bonds of our relationship and marriage....But they have not succeeded and the only reason is God. Every day we fight to make it through another day, and when we do we just hold on to hope that the next day will be a little better than the day before. That is sometimes the only way we make it through.

On Valentines day Jeremy and I celebrated our 5 year anniversary of the day Jeremy flew from California to ohio to meet me for the first time after we had been talking online and the telephone for 3 months. That day 5 years ago was, magic. The moment I saw Jeremy standing there at the airport I walked up to him and kissed him for the very first time and felt his arms around me, I knew....I knew that this was the man I was going to spend the rest of my life with even though we had only just met face to face for the first time and we had only known each other for 3 months. He took 2 weeks of leave from the Coast Guard to spend with me, and by the end of those 2 weeks we knew we wanted to be married and spend our lives together. Just a few months later on Sept. 22, 2007 on the last day of summer Jeremy and I were married, and then just 12 days later I was in the hospital sick and that was when our journey with my health problems/diseases began.

Our life together has never been easy if it were I think I would worry myself to death that something was wrong. But here we are 5 years later still together and still in love, though very battled and bruised and at times broken. However, we are still together and we still love each other very much.

I go back to see my family doctor on Feb. 23rd for a follow up from the ultrasound test to check that ovarian cyst and also the doctor visit I had with a gynecologist. Everything shows that this cyst has NOTHING to do with all my symptoms of severe stomach/intestinal pains, vomiting, diarrhea and etc. the doctors and the tests shows that it is the crohns, and gastroparesis that is causing all my problems. And proved that my "former" gastro doctor didn't know what he was doing and that I clearly need a new doctor.

So already my family doctor's office has referred me to see a Gastro doctor at Ohio State University that specializes in Inflammatory bowel diseases. The bad news about this is that I can't get in to see this gastro doctor for 6 months!!! My appointment is in July! I'm praying this doctor is worth half a year wait and all this pain and suffering I'm going through. This will be the 3rd gastro doctor I will see in 4 years! I need a good doctor who is willing to take care of me and not shuffle me around and say "I don't know what is wrong with you" after I've paid them hundreds of dollars. I can't afford another doctor like that, and if I do have another doctor like that I think my husband is going to punch someone in the face.

My family Doctor has also taken over all medications that the "former" gastro doctor had prescribed so I won't have to deal with that gastro doctor again, until I see my new gastro doctor.

Luckily this winter here in Ohio has been very warm and mild so far. We have only had one real snow and we got 2 inches and in less than 48 hours it was all melted. I'm thankful for a mild winter because I need the lovely sunshine we have been getting. It is so depressing to be stuck inside for nearly 5 months with no sunshine.

I'm continuing to make the hats and scarves for the homeless project for next winter, and I'm also making some items to start my Miranda Dawn Creations. Right now I'm working on a crocheted summer tote bag! It's going to be so cute and I can't wait to get it done and share photos of it. I have a few more items to make for promotional and then I can start to take orders and make some money to help pay for my medications and doctor bills that seem endless at times. I'm not expecting to get rich but at least it will help a little to help pay for what I need.

I will write again after my appointment next week with my family Doctor.

More Tests, and New Doctors

2012-01-22T09:49:00.000-08:00

After my last Gastro appointment on Dec. 23rd 2011 and the gastro dr. telling me yet again for the 2nd time since Sept. 2011 "I don't know what is wrong with you" he tells me yet again "I don't know what is wrong with you, but I don't think all your diarrhea, stomach and intestinal pains are from Crohns disease, and you need to go back to your family doctor and have him refer you to a gynecologist and possibly other specialists because I don't know what to do for you."

This gastro dr. has only been my dr. for 4 months and this is what he is telling me! I'm ready to find a New gastro doctor and NOW!

So, on Jan. 19, 2012 I go to my family doctor for a follow up from the what the gastro doctor told me to do. My family doctor didn't have any kind of paper work or any of the test results from what the Gastro Doctor did right before Christmas! My Family Doctor really didn't even know what was going on until I told him everything. His reply was, "we need to find you a new specialist, do you have any in mind."

My family doctor also believes all my symptoms ARE because of Crohns because my Crohns is NOT in remission. My family doctor then asked me, "so what is the gastro doctor doing for you right now?" I had to tell him NOTHING other than keeping me on medication for Crohns which doesn't seem to be helping. He was upset to say the least.

My last CT Scan in December, showed I have an enlarged cyst on one of my ovaries, and this is what the Gastro doctor thinks is causing all my problems. However, my family doctor doesn't think so, but to be on the safe side, and to rule it out, my Family Doctor ordered a ultrasound of the cyst on January 31, 2012. He isn't referring me to a gynecologist right now because he thinks that would be jumping the gun before he would do any other tests to see if I even need to be referred to a gyno doctor.

Then my family doctor also ordered a blood test, to test me for ciliac disease because that sometimes goes hand in hand with Crohns and he wants to rule that out as well. And he ordered another stool culture because I'm showing signs of having Cdiff again....yuck!
I am desperately praying that I don't have either especially ciliac disease. I already have 2 diseases and I don't want to have to add a 3rd to my life, these 2 I already have is bad enough.

The good news I have to share is that after 20 days of being on the steroid predisone, I did NOT gain Any weight. However I did not lose any, praise God for that. I had never been so excited to get weighed at the doctors' office ever in my entire life.

Even after taking the predisone my days/weeks are still consisting of chronic pain (as my family doctor calls it) switching from diarrhea to constipation every other day, and still being very weak and some days bed ridden from pain and weakness. Yesterday however, was one of the best days I've had in over a month. I was able to do house cleaning through out the day by working about 10-15 minutes at a time, then sitting and resting for 20-30 minutes. Then getting back up and working 10-15 minutes again. It was a great feeling to be able to do that after so many weeks of Not, even if it did take me over 5 hours to do house work that use to take me 1-2 hours by myself. Jeremy did help me by sweeping, mopping the kitchen and doing the dishes because by the time I got everything else done I had no energy to finish the kitchen. I thank God for him and that I am blessed to have a husband who isn't afraid to do a little "woman's work". If he hadn't done that it just would not have gotten done, thank you Jeremy for helping me.

Now after getting the blood tests and stool culture done, we are playing the waiting game until we get the results and also playing the waiting game until I go and get my ultrasound on my cyst. Then another possible waiting game to get in to see the new gastro doctor once i get referred. I have to call my family doctor with the name of the gastro doctor I want to be referred to at the Ohio State University Gastro clinic and then he will get the ball rolling for me. I will be calling me Monday to tell him the name of the Gastro Doctor.

This past Monday, Tuesday, and Wednesday I went and spent those days with my Grandparents so that Jeremy could have a little break from taking care of me. But over those 2 nights I spent with them, my poor grandmother didn't get much sleep because I was so sick. The first night was the absolute worst. I didn't get to sleep until after 3a.m and was awake every 1-2 hours waking up in pain. Grandma kept getting up and checking on me every hour or so to make sure I was OK and also didn't go to bed until I did. the difference between Grandma taking care of me and Jeremy taking care of me, is that Grandma doesn't have to go to work or school, and can sleep as long as she wants. So she did get caught up on her rest and she said she enjoyed having me come over despite my health problems.

While I was Grandma and Poppy's I read the book "Heaven Is For Real" if you have never read this book it is a must. It is about a little boy's experience going to heaven. I read the book in less than 2 days it was so good.

So now I am back home for a few days before heading back to Grandma and Poppy's (weather permitting) to spend a couple days with them again. So that I won't be alone when Jeremy is in class in case something should happen with my health. This looks to me the norm for me at least for the winter quarter of college. I hate being away from my husband, but right now it is for the best until we can get my disease into remission and get me feeling better.

Starting 2012 off With Prayer

2012-01-02T13:19:00.000-08:00

Even though I'm bedridden and in a 8 out of 10 level of pain even with taking what little pain meds I am allowed to take now. I wanted to try to write an update myself, no matter how long it may take me.

The Gastro Dr. put me on Predisone after my appointment Dec. 23rd. I took 4 pills a day for 5 days and now have down graded to 3 pills a day for 5 days and then day after tomorrow will down grade to 1 pill a day for 5 days and then 1/2 a pill a day for 5 days and then go off the predisone. However, my Crohn's is not getting any better since my dr. visit and I'm an continually bed ridden and in so much pain I'm near collapsing when trying to walk and go to the bathroom.

Jeremy has been my night in shining armor through all this. Even going as far as sleeping on the floor for 4 nights so I could have our big bed to myself. But after seeing him lying on the floor for 4 nights and seeing as I am not getting better. I called my dad and asked him if we could borrow his spare twin bed for Jeremy just until I can get better where Jeremy and I can sleep in the same bed again.

My dad brought the bed over yesterday, he and Jeremy set the bed up right next to my bed so we won't be so far apart from each other. I keep telling him this is only a temporary thing until I can start to get better and then we will send the bed back to Dad's. But only being married 4 years to each other it is very hard for him and I not to be able to share the same bed we have shared with each other since we got married.

In the midst of all this my Grandma (my dad's mom) created an event a prayer event on facebook for me here is the link to it so you can learn more http://www.facebook.com/events/156251371145256/

My Grandma called Jeremy and told Jeremy that she feels led by God to start this Prayer Event and have as many people as we can possibly get to pray for me that God will heal me from Crohn's Disease, Gastroparesis, and the Stage 2 Damage to my Esophagus. So tomorrow Jan. 3rd 2012 starting at midnight tonight people who have accepted the invitations to pray for me and my healing will be through the entire day tomorrow. People as far East as South Korea and as Far West as California have accepted the invitations to pray. People from all over the world have written saying they are praying and fasting for me.

But as I write this post I just got a horrible phone call from Grandma who made the prayer event. She and my dad took my Grandpa/Poppy to the hospital with Chest pains. They did a CT Scan and blood work and found his pancreas is severely inflamed and infected. He right now is being admitted to the hospital to start Antibiotics and to have more tests run to see what is causing the infection. There are signs it may be his gallbladder and he has gall stones but they don't know. And he is at too high of a risk for this to get bad quickly to let him go home. So now my Grandma is spending the night at the hospital and they don't know how long he will be admitted to the hospital until they can get more tests run.

This is just too much.....I'm bedridden with this disease and my Poppy is in the hospital and I can't see him. And in a week it will be the 3 year anniversary of the Death of my other Grandpa my Papaw! DEAR GOD I CAN'T TAKE ANYMORE!!! My Family needs a miracle with this prayer event.

On a side note from this Jeremy has spent the entire day making phone calls to the Gastro Dr. on the update on my condition and how it is NOT improving at all. And made my follow up appointment with my Family Dr. as requested by the Gastro Dr. and we will be asking my family Dr. about whether or not he thinks we should try to get a home health Aid to come in and help take care of me until I can start to improve and get back to where I'm not bedridden and can do more for myself while Jeremy is away at School full time every week.

I must go now and make some phone calls to friends and family about my Poppy and get more people to pray for us. Because prayer is the only thing that will help my family and I.

Miranda's Christmas In Pictures 2011

2011-12-28T10:50:00.000-08:00

Miranda At Gastro Dr. office December 23rd. She was in so much pain she nearly collapsed and we had to get her into a wheelchair while she filled out paper work.

Miranda in examining room at Gastro dr. office as you can see she was in A LOT of pain. Gastro Dr. took one look at her and started ordering a special CT Scan, blood work, urine tests, stool culture etc. and sent us across the street to Mount Carmel To have all of this done the same day.

Miranda drank 1 and a half bottles of this horrible barium drink for her CT Scan. I didn't think she was going to be able to hold it down because she was in so much pain and nausea's but some how she did and they got the CT Scan done.

After being at Mount Carmel West Hospital and Gastro Clinic from 9:20 a.m. till 3:00 p.m. we finally made it home. Her arms looked pretty horrible from all the blood they had to draw for the blood tests along with hooking up her IV for the CT Scan. But we made it through and will know something this coming week. The Doctor also did another med. change, put her on predisone and took her off the Entocort. The Dr. also officially diagnosed her with Gastroperesis. Along with the Crohn's Disease and the Stage 2 Damage to her esophagus

Miranda Christmas Eve day smiling through the pain. The Couch became her little haven for Christmas Eve and Christmas Day as family and friends came to visit and exchange gifts
.
Miranda Christmas Day. She was still in pain but not as much as the 23rd and the 24th
She is smiling because a friend donated nearly 15 pounds of yarn Christmas Eve, for her ministry project "The Smitten Mitten Expedition" Where she crochet's and knits hats and scarves for the homeless in our area. Miranda was trying out her new Knitting Looms for the first time and was so excited at how easy they were to use, and it helped her work through the pain that the Crohn's seems to constantly have her in.

Please Continue to pray for Miranda and the Doctor's that some how some way they can find a way to put the Crohn's into remission and that Next Christmas Miranda will be able for the first time in 4 years be able to spend it with her family and travel to see them.---Jeremy Caverley

In the Altar of Affliction: How God Uses Me While I am Sick in Pain-Top 10 List

2011-12-19T09:46:00.000-08:00

1. I can crochet items for homeless people.

2. Write inspiring cards to people.

3. Pray

4. Write letters of encouragement.

5. Play piano.

5. Talk on the phone to people and encourage them.

7. Make cookies and food for people as I can't eat much of anything anymore.

8. Write poetry and short stories.

9. Write funny puppet skits and live action dramas to teach about Jesus.

10. Write songs for the Lord

TOP 10 Things That I Am Thankful For

2011-12-19T09:37:00.000-08:00

1. That my house is clean and I have a husband who helps keep it that way when I'm not able to.

2. I was able to take a shower and clean myself up.

3. I am able to spend quality time with my husband as limited as we are in what we can do.

4. That I'm able to pray for people who are in need.

5. That I had a small bowel movement, and it helped ease my pain in my abdomen.

6. My grandma offered to do my laundry.

7. That Jeremy and I have enough money to make it on our own.

8. Jeremy and I have been together 5 years and the future holds many more.

9. My Jeremy cries and is a real man to love me that much.

10. I still have my Poppy because Papaw's gone.

Condition Critical: Our Hands Are Tied

2011-12-18T21:01:00.001-08:00

Written by Husband Jeremy Caverley

This last week has been very trying as we have gone without sleep as so many things have happened.

It got really bad these last 2 days as she has collapsed in pain twice now, and was up for over 24hrs in pain several days a week.

She has only been able to keep down 2 or 3 Ensure and a sandwich or so. Making the grand total of calories a day about 800 to 1000 or less.

Every day she is either in bed or her chair resting, trying to deal with an upset gastro tract and all is so difficult.

We have been keeping track of everything for the past two weeks. From calling the doctor, medicine, pain, fever, bathroom visits, etc.

The doctor in Columbus isn't available to see her as often as needed. They told us to find a new specialist that is closer!

Along with 2 changes in local doctors and this also being the 2nd gastro specialist to begin with, it is becoming a common problem for us.

We are running out of options to find a closer specialist. Because in reality there isn't. The only place closer is another in Columbus, Cincinnati, or Cleveland, along with out of state!

So we are on the search for a new gastro specialist if her appointment this Friday doesn't amount to anything and if the local doctor can't help us either.

Many have told us to try an ER, but they have consistently given us a wrong diagnosis and told us to just do a follow up with the doctor the next day and just gave a shot for the pain.

As of right now our hands are tied as both the local doctor says to call the specialist and the specialist says find a local doctor....

LORD please give us the right sign....which way to go....

UCVlog: Inflammatory Bowel Disease PSA

2011-12-04T23:41:00.001-08:00

It's Crohn's & Colitis Awareness Week!

2011-12-04T16:37:00.000-08:00

Ask Your Legislator to Join the Crohn's & Colitis Caucus!

December 1st-7th is Crohn's & Colitis Awareness Week, use this opportunity to ask your legislator to join the Crohn's & Colitis Caucus and help raise awareness for these devastating diseases. Congressmen Ander Crenshaw (R-FL) and Jesse L. Jackson, Jr. (D-IL) launched the Congressional Crohn's and Colitis Caucus in March 2011.

Senate Supports Crohn's and Colitis Awareness

2011-12-04T16:33:00.000-08:00

Thanksgiving Day Wish Come True

2011-11-30T18:58:00.000-08:00

Despite all the terrible things going on with my health some good things have happened over the past few weeks since I last posted.

The day after my last post Saturday Nov. 19th with the help from my Grandparents, Dad, his fiance' and my husband Jeremy. I was able to go to the event "One Night Without A Home" that was held in our town of Chillicothe Ohio to raise awareness about homelessness.

We had a booth for JMC Ministries and gave away lots of stuff about homelessness. I got to talk to many people about the "Smitten Mitten Expedition" where I make hats and scarves and fleece baby blankets with the help of my friend Dawn. I shared about my diagnosis with Crohn's and how through this disease I started making the hats and scarves to try and still make a difference in my community despite the fact I'm home and bed bound many days.

My husband Jeremy got to speak at the event about how he was homeless for 2 years in Houston Texas when he was just 19 yrs old. And through the help of many was able to make to where he is today.

We also held a raffle at our booth and raffled off 18 books about homelessness written by our good friend Dr. Jeremy Reynalds who is the founder of the largest family homeless shelter in New Mexico. We raised over $83.00 to help the local homeless shelter in Chillicothe Ohio.

The only sad thing about the entire event was that I really paid for it the next day. I got even more sick despite the weather being nice and was down sick with the chest cold for over a week and due to my immune system being so shot I'm still not over the cold and because I'm still on my antibiotic for the Cdiff I can't take anything to get rid of it.

I was suppose to go to my Gastro Dr. appointment the day before Thanksgiving day, but because I was so sick and I'm so prone to catching any virus that someone may have in an inclosed space like the dr.'s office my Doctor Cancelled my appointment to keep me safe and try to give me a chance to get better.

So, with that news we were able to breathe a little easier and I got to stay and bed and rest the hold day before thanksgiving. And Thanksgiving day even though I was still sick my Grandma told Jeremy to bring me over to have Thanksgiving with them since it was only going to be just her, grandpa, and my Dad there. The only thing that went good on Thanksgiving was the fact that everything I ate from the Turkey to the mashed potatoes and noodles did NOT mess up my Crohn's! I'm thankful I got one day to enjoy without abdominal pain.

But since the Gastro Dr. cancelled my appointment to allow me to get better, they rescheduled my appointment for Dec 23rd. As of right now I don't know what they are going to do other than talk about how I'm doing and see if they need to try something new to help my Crohn's get into remission faster.

As of today though I'm still fighting this cold and though it has gone out of my chest I still keep sneezing, coughing, achy and running a low grade fever nearly every night for a few hours. I can't take any antibiotic or stuff for it because I'm still on the antibiotic to get rid of the Cdiff until at least Friday. And I'm sure after that the Dr. will want to do another test to see if the Cdiff is gone or not. Not knowing which is causing it between the Cdiff and the Crohn's but I've been having severe abdominal pains over the past 3 days the other night Jeremy and I were literally up for over 24 hours because I was in so much pain and no amount of pain meds would help it. So by 8a.m. Tuesday Morning we were exhausted and Finally the abdominal and stomach pains eased up enough where I was able to sleep until 4p.m.

Some people are saying that I'm hurting because of my diet....Well I hate to them, but they are wrong. How can it be my diet when most days I'm living on Ensure drinks, and eating either boiled or grilled chicken, ramen noodles and toast and crackers because I can't hold anything else down? Even my family is starting to believe that it doesn't matter what I eat or not eat between the antibiotics reeking havoc on my stomach and intestines and the Crohn's Disease reeking havoc as well. I'm in a lose lose situation until the medications start to really work.

There are days like today I can't make it through on my own and I have to just pray and ask God to carry me through today and hope and pray tomorrow will be better.

What It Means To Be Broken

2011-11-18T14:58:00.001-08:00

This week has honestly been the worst I've endured yet fighting Crohn's and today it got even worse.

Since last week I have been fighting to get new medication for my Crohn's Disease because, the medication "Lialda" I was on my prescription drug plan is refusing to cover it and so forced my Dr. to switch me to what is called "Asacol". I got this after a week and 2 days of fighting between the pharmacy, the doctors office and the prescription drug plan company. And That's just one fight.

In the midst of fighting to get the medication, I was to have a stool culture done to check and see if I have any kind of infection in my stool because where I contracted Cdiff 2 months ago. Well we had to fight 3 days to get the fax sent to the hospital lab we use. Because the dr.'s secretary was sending it to the wrong lab.

Then today I wake up and I am coughing up infection out of my chest. So now I've caught the beginning of an upper respiratory infection/chest cold. So I'm in bed all day today running a fever, aching all over, taking mucinex D to try and cough the infection out of my chest before I get too bad. I'm thinking about calling the doctor to make an appointment to get medication to get rid of this infection. Because my immune system is so shot and I'm malnourished from not being able to eat good nutritious foods because of the Crohn's Disease and I don't see any other way I'm going to get rid of it.

This evening around 3:00p.m. everything came crashing down on me and my husband.Less than 24 hours after turning in my Stool Sample for Testing, the Gastro Dr.'s office called. I knew something wasn't right because the person who called was actually another Dr. that works in the same office as my Dr. when normally it is the Dr.'s assistant who makes these calls.

The Dr. tells me "Mrs. Caverley, your stool culture came back and I have bad news. You have Cdiff again. We are calling you in another round of antibiotics but this time instead of being on them for 1 week you will be on them for 2 weeks and taking these pills 4 times a day."

That's when i started to cry on the phone and apologized to the Dr. for crying but told him that why I'm crying is because i woke up this morning with what seems to be an upper respiratory infection, and now I'm being told I also have Cdiff and I'm still fighting to get my Crohn's Disease into remission on top of it all.

He felt so bad for me and tried to console me on the phone. But honestly there really isn't anything anyone can do. Crohn's is also an auto immune deficiency disease and so I am more susceptible to getting all kinds of infections as well as any kind of communicable diseases like the flu, colds, STAPH, MRSA etc.

We have been told to look into buying surgical masks for me to wear when I have to go out in public to the stores, hospitals, dr. offices etc. because if I don't I might keep getting sick constantly. And that makes me feel really bad because I know if people see me wearing one of those masks they're going to think I'm capable of giving them something which in reality is the opposite. I'm trying to keep "them" from giving me whatever they have. Just one more thing to make me feel like a FREAK!

To try and put what I'm going through into words is so hard because honestly you can't grasp the enormity of the situation unless you are sitting here with me hearing me say it to you. As someone told me once a few weeks ago when they called. They said, "When I read your posts and blogs I didn't grasp the severity of your situation until I heard you tell it over the phone.

I guess it's just one of those things you have to experience it to understand it.

So no happy, inspiring things to share today because I'm truly broken and my faith is actually wavering. I keep asking God WHY!!!!!! Why do you keep allowing me to suffer more and more when so many are lifting me up in prayer to either be healed or have my suffering decreased so that it is more bearable. I myself have reverted to one line prayers like "God help me to get through this day." "God ease the pain so I can eat and not be malnourished." Those kinds of prayers I've given up on the prayer of healing because I prayed that prayer for 4 years and there has been no healing. So I have accepted that God is not going to heal me and for some reason wants me to go through this. I don't know anymore.............

Trying To Make A Difference In The World While Fighting Crohn's

2011-11-13T03:49:00.000-08:00

It has been over 2 weeks since I last shared anything, and with it being 6:51 a.m. and I've been up all night in severe pain again from the Crohn's I thought I would write.

This coming Thursday was to be the end of me taking the Steroid to help put my Crohn's disease into remission. Sadly I will Not be going off the steroid because I am still very sick with the Crohn's and it hasn't gone into remission.

I talked to my Gastro Dr. last Monday and they scheduled more blood work to be done, to check my levels and see how bad the inflammation and infection still is and how high of a dosage of the Steroids I should be on. I went to have the blood work done on Wednesday, then Nov. 23rd the day before Thanksgiving I have to go back up to Columbus for an appointment with my Gastro dr. about the results from the blood work and possibly see what other medications he wants to try to get my Crohn's into remission.

Sadly though if I continue to get infections like the urinery trac infections I've been fighting along with the reoccurring outbreaks of the sores and have to keep being put on antibiotics I will not get my Crohn's into remission. Because every time I have to be on antibiotics it flares up my Crohn's worse.

As soon as we can get some of my current medical bills paid off, I'm going to be referred to a dermatologist about my reoccurring outbreaks with the sores and see if there is a different option out there to treat them other than keep putting me on antibiotics. Like perhaps a topical medication of some kind that would heal them.

Next Saturday Nov. 19th Jeremy and I are participating in the event "One Night Without A Home" that is happening in our town of Chillicothe Ohio to raise awareness about homelessness. Jeremy has been on committee over this event and we are even going to have a table for JMC Ministries! We will be handing out FREE brochures about our ministry, audio cd's of our interviews with 2 homeless shelters one right here in Chillicothe that just opened up a month ago called Daughter's of Ruth, and the other interview is with Jeremy Reynalds the founder of Joy Junction the largest family homeless shelter in all of New Mexico. We will have 15 copies of each interview to give away.

We will also have 20 FREE copies of JMC Ministries (Jeremy Caverley's) essay he wrote for is English Class in College about his experience being homeless for 2 years in Texas due to domestic violence at home and the death of his mother.

Along with all this we will have brochures about JMC Ministries and what we are doing to "fullfill the great commission" And lastly we will be raffling off 18 books written by Jeremy Reynalds of Joy Junction about homelessness. All the proceeds of the raffle will go to the homeless shelters that will be present at the "One Night Without A Home" event.

This event is a great opportunity for Jeremy and I to help raise awareness about homelessness and to not just share JMC Ministries experience with homelessness but others as well and how we all can make a difference even if we have a debilitating, incurable disease like Crohn's.

Because this week I went to Daughter's of Ruth homeless shelter here in chillicothe and a Women's domestic abuse/homeless shelter in Circleville along with my Friend Dawn and we gave away all together 10 fleece baby blankets Dawn had made, and over 20 sets of hats and scarves that I had made. for our Smitten Mitten Expedition as we call it to help keep homeless warm for the winter. This was the 2nd year Dawn and I had done this and we had twice as many items this year compared to last year.

I am praying desperately that God will grant me a good day next Saturday on the 19th to be able to go to this "One Night Without A Home" event so i can share my story and also try and get more people to get involved with the "Smitten Mitten Expedition" and either help make items or buy items like mittens or gloves. Or to want to donate yarn and fleece so Dawn and I can continue to make more items for the homeless. Because every hat and scarf I have made over 2 years has been made with yarn that was 100% donated! I have not had to buy one roll of yarn thanks to generous donations from people in my community.

So as you can tell it is my greatest desire to be well even if it only for that day so I can go to this event. Even if I have to trade being well for he Holidays to go to this event I pray God grants me this pray and desire because I want the world to see how God can still use a person who is home bound and bed bound most of the time and suffering with an incurable disease, to still make a difference in the world we live.

Feeling Like Job In The Bible When He Had The Painful Sores On His Body

2011-10-28T08:09:00.000-07:00

Yeah this is how I feel most mornings. Thought I would share this gross yet funny pic since Halloween is right around the corner.

That past few days have been another fight. Sunday October 23rd I woke up with a horrible pain in my neck. I went to the bathroom looked in the mirror and there at the base of my neck was this large sore!

It was hot to the touch as if it had a fever in it and very red and infected. So the next morning on Monday I called the doctor right a way to make an appointment. Because I've had sores like this popping up on my body for 2 years now every 2-6 months and the only way to get rid of them is to go to the doctor and get put on an antibiotic.

I make my appointment to my family Doctor and he takes one look at this horrible sore on my neck and tells me, that this one has him worried. Because I'd never gotten one on my neck before and there are lots of complications that can arise with a sore like this on the neck. He said he was happy that I came in right a way to have it treated, because if not it could have turned to something really bad in just a couple of days. So, he puts me on another round of antibiotics, and prescribes me also a antibiotic cream to put on the sore and other sores that might pop up to heal them. He also took a culture of it, which came back negative for STAPH or anything which is good but doesn't really explain why i keep getting these sores.

I'm on the antibiotic until the middle of next week, and already it is causing problems with my Crohn's. As all antibiotics do. Last night was the worst.......Literally Jeremy and I got 0 hours of sleep, even after I maxed out my pain meds I would dose off for a few minutes and then wake up with horrible intestinal and stomach pains. By the time the sun was coming up this morning and it was going on 8 a.m. I just broke down and cried. Because of no sleep, pain, and most of all it was time to take another round of the antibiotic. Which in turn repeats the vicious cycle.

My Gastro Dr. thinks I need to be referred to a dermatologist because neither him nor my family dr. know why I keep getting these horrible sores all over my body. However, if you look up symptoms/side effects of Crohn's disease it says that Crohn's can cause painful large sores on the body and even inside the body of a person with the disease. But for some reason when I tell the doctors this when they ask me why I think I keep getting these sores and I tell them I think it's because of the Crohn's they just look at me with like they aren't sure. Don't get me wrong I love my doctors, it's just I am really tired of having to take antibiotics every 2-6 months to fight these nasty sores. I also would like to know why I keep getting them, but it seems there are more questions than answers right now.

So it looks as if I'm going to be going to a dermatologist in the very near future. Which means more tests to be run and more bills to have to pay. Oh Joy!

Along with all this I have another fight with Medicare! I just received yesterday the bill for my Gastro Emptying Scan I had done over a month ago at Mount Carmel West Hospital, and Medicare is refusing to pay anything on this bill! Now Monday I have to call Medicare and try to talk to them and see why they won't pay anything and are leaving me with a $115.00 bill to pay. I have my suspicions as to why and it has to do with the Oh Great Adena Hospital that I talked about in my last blog about how they have been billing medicare for bills they shouldn't be.

The only good news this week I have so far is that I am now on A prescription strength generic version on Prevacid to help with the Damage in my esophagus. it is affordable and cheaper than buying the over the counter version of Prevacid.

I did go to my Grandparents and spent the night with them on Tuesday to give poor Jeremy a break so that he could get some much needed rest. Taking care of me day n and day out is very tough for anyone, especially when you sleep in the same bed with them and they are crying and whimpering in pain in their sleep waking you up. I had not been to my Grandparents in over a month from being so sick. It was great to just have a change of scenery and talk to my Grandma and my Poppy. It is so hard on them to watch me struggle and fight this disease, especially my Grandma because she is the type of person who wants everyone to be happy. And it's clear that I'm not happy most days especially a day like today. She's told me "I've prayed some nights when I know you are in so much pain, that God give me your pain. I'm old and I have been through more than you and I can handle this better than you can."

Sadly she is not the only one who has prayed this prayer. My Jeremy at times has laid next to me holding me and stroking my hair as I cry out in pain. Yelling, "God GIVE ME HER PAIN PLEASE TAKE IT FROM HER AND GIVE HER A BREAK FROM THIS! I CAN HANDLE THE PAIN GIVE IT TO ME!

But for some reason God chooses Not to take my pain away and I have to go through it even if it lasts hours or days on end.

Having To Fight Every Inch Of The Way

2011-10-21T08:05:00.001-07:00

The past few days have been really rough.

First After suffering through for nearly 5 days with severe abdomen and stomach pains from the upper endoscopy, the pains have finally stopped. That was the worst pain I've felt in over 4 months.

Monday was literally the worst day. I was on the phone 5 times with the Gastro Clinic about my Crohn's Med's. Because when we went to the pharmacy they told us the Entocort (steroid to treat crohn's disease) was going to cost me $385.00 with my prescription drug plan. We were FREAKING OUT! So we called the gastro clinic, and they got busy calling the pharmacy asking why the medicine is costing this much even with the generic brand?

Then while dealing with this the mail comes and I get another medical bill that I'm NOT suppose to be getting, from the worst hospital in my opinion in the entire south central Ohio area "Adena" I don't even know why they have a billing department. Here is why I ask this question....

I go to Adena to have a test done or in this instance I went to the ER. I wait sometimes up to 3 months before I get a bill. The hospital is located in Chillicothe Ohio, but the bill comes from Michigan! Then when you are to mail the bill back and make your payment to "Adena" in chillicothe Ohio you mail it NOt to Chillicothe Or To Michigan where the bill came from, NO you mail back to Cleveland Ohio! However, when you have a complaint like we always do because we are getting bills from Michigan that we aren't suppose to be getting or we are getting double bills and they may just be double billing Medicare and screwing them over too. We have to call the phone number listed on the bill. The phone number is to Chillicothe Ohio Adean Hospital, not Michigan where the bill came from. So then you get the opportunity to talk to people who have no idea why we are getting the bills we are getting and they have to then go into their billing department computers that seem to be in Chillicothe Ohio but are being printed in Michigan and then processed in Cleveland Ohio to try and get this all fixed!

So upon receiving a bill I'm not suppose to and now reading the above story that we go through nearly every month. And dealing with possibly having to pay $385.00 for one prescription you know I'm freaking out completely!

At the same time all this is going on, my Friend Dawn comes over to try and cheer me up by giving me 2 Jeremy Camp T-shirts her and Gary bought for Jeremy and I at the Concert on Sunday that we had to miss because of the Crohn's acting up. I'm so thankful she was there for a short time because she saw what I was going through and I was having to deal with it all on my own because Jeremy was in class.

So after 5 phone calls from the Gastro clinic they finally some how some way got the Entocort prescription down to $85.00 from $385.00. The lady from the Gastro clinic even said she doesn't understand what the people at my pharmacy were doing and how they got the price of $385.00 for that prescription.

I can work with $85.00 because we still don't know how long I'm going to have to be on this medicine before the Crohn's goes into remission and this prescription will last me over 3 months.

Everything got worked out after nearly 8 hours of fighting and my stress level finally started to go back to normal.

But let me vent a little more about "Adena" Hosptial.......

So after reading all that we go through nearly monthly just to get a bill from them, oh it's not over.

This happened about 4 months ago....
One month when we mailed our bill to them, they say they never received it and without warning a month later when our next bill was do instead of a bill saying they didn't receive the previous months bill, we receive a letter saying they have turned us over to a collection agency! My bill for this hospital is over 10,000 dollars and now that they have turned us over to collections they have added on over 2,000 dollars of interest!

My husband Jeremy was on the phone fighting this for nearly an hour. First off we weren't receiving a bill every month from Adena to pay our monthly payment sometimes we wouldn't get a bill for 2 months and then we'd get one double billing us because they didn't send us a bill every month. Then there was the other time we didn't get a bill for over 3 months and then we called and told them about it now mind you we are calling Chillicothe Ohio the bill is being sent from Michigan. So they say they will send a bill out right a way to us so we can pay.

Now that we are dealing with them turning us over to collections because some how the bill that was sent from Michigan and then we mailed to Cleveland Ohio didn't make it and got lost some how. My husband brings this up and how their billing department is completely a mess and this isn't our fault and we shouldn't be turned over to collections because we are trying to pay our bills.

So to make things right and get out of collections my husband pays 3 months worth of payments when he only had to pay 2 months just to be safe. But here is where it gets ugly...the person on the phone in Chillicothe Ohio says, "it is not our responsibility (meaning Adena) to send you a bill every month, and if you don't pay your bill monthly we will turn you over to collections again!"

HOW the heck are you to pay a bill if you don't receive one and know how much you are paying and how much you have paid? My husband was fuming mad! This person was threatening us!
So to stop this from ever happening again and the bill we mailed getting "lost" we now call every month and pay the bill over the phone, but guess what that doesn't work either.

Because, just a month later after going through this and paying the 150 dollars and being threatened by this "billing department person" who in my opinion is nothing but a con-artist in a cubical we find out when we call the next month to pay our bill, (that we actually got a bill in the mail for dispite what that person said about not having to send bills out) that the 150 dollars we paid was in the computer system but was never credited to our account!!!!!! So this new billing department person we're dealing with has to not only add the 150 dollars to our account that should have been added a month ago but also add on our new payment for the current month!

Luckily since then we have been getting regular bills, but now we are getting double billed and receiving bills we should not have even been billed for because Adena messed up AGAIN! This is the worst hospital billing department EVER!

one day last month while fighting to get a bill removed that I wasn't suppose to have been billed I for asked the "billing department" person on the phone, "I have a question, why is it that when I get a bill it comes from Michigan, and when I mail the bill out it goes to Cleveland Ohio, but when I have to talk to someone about the bill that came from Michigan I have to call and talk to someone in Chillicothe Ohio?" The lady on the phone says, "ma'am I honestly don't know."

Ok, my question is how do these people get this job? Because you have to have a college education to do this job, yet every time I have to deal with someone in that dept. they don't know what is going on or why things are happening to me and my bills? This has not been a year fight, I have been fighting with this hospital for over 4 years now! 4 YEARS!!!! And still people (and different people) in that department don't know what is going on! Holy Crap I think it's time to get a new billing department!

This is why I refuse to go back to this hospital. The last time I was actually admitted to this hospital and stayed there, they tried to give me the wrong medication!!!! THANK GOD I have worked in the nursing field because if I hadn't looked in that pill cup and questioned what was in it, I could have possibly died. When I found out what one of meds were that they were trying to give me I said, I'm not suppose to be taking that I don't have that wrong with me. And immediately I said I wanted patient advocate in my room NOWWWWWWW!

Come to find out that not only were they trying to give me the wrong meds but nurses had been signing off that they had been giving me a medicine that they HADN'T! Not only did the hospitals pharmacy mess up but the nurses were also negligent. And because of this I got one out of the 3 days I was in that hospital written off because if they had been giving me the right meds I would have been out of the hospital sooner. Oh and while all this was going on there was a fire that broke out on the floor above me and that floor had to be evacuated. Luckily I haven't had to stay in a hospital since then and that was the beginning of 2008.

To anyone that stays in a hospital be proactive with your care! I can never emphasis this enough. Never take things at face value, if you are brought a pill to take, ask what it is for and why they are giving it to you. Because asking just might save your life! Remember nurses and doctors are human and humans make mistakes. So don't play Russian roulette with your life. And if you feel you or a family member isn't being treated properly at a hospital or nursing/rehab center you have the right to ask for PATIENT ADVOCATE! You have rights so use them.

Ok I'm done venting about hospitals now....

To get back on track I'm doing better after 5 days of suffering through horrible abdomen pains and sleepless nights and maxing out my pain meds.

I'm still not completely better, and wont really ever be but at least I'm getting back to my "normal" self. Still taking all my meds, but luckily not any pain meds.

It's always a good day when I'm not in severe pain, no matter what I may be dealing with.

Missing The Jeremy Camp Concert NoThanks To Crohn's

2011-10-16T11:40:00.000-07:00

I wanted to share something uplifting because, I'm not feeling so "uplifted". Yesterday I began having severe abdominal pains. Nothing helped, and they were so bad that I maxed out on my pain meds. I suffered through the night and today is not any better.

I didn't get to sleep until after 4 a.m. this morning, then I woke up at 7 a.m. in pain, then at 10 a.m. and was awake crying and screaming out until Noon until my pain meds took effect. I slept for 2 hours and woke up at 2 p.m. in more pain, so I thought I would try and write.

Today I've been on a liquid diet only Ensure and water to drink. My husband and I believe where they filled me with air from the upper endoscopy it's has given me very bad gas and to be frank, I have not stopped farting ever since the upper endoscopy, and the only time I feel a little relief from the pain is when I fart. But now after having solid bowel movements for weeks and doing good, I'm starting to have diarrhea again on top of all this going on.

Welcome to another day of a life with Crohn's.

Tonight I was suppose to go to see Jeremy Camp (He's a Christian Rock Artist) at a church in Grove City Ohio. My good friends Dawn and Gary got Jeremy and I tickets nearly 3 months ago as a Birthday present for Jeremy. This was before my diagnosis and everything, and they and us even thought by this time I would be better and able to go to the concert.

Jeremy Camp is one of my favorite Christian Artists his music is biblical and inspiring. Below is my favorite song of his and it is also one of the songs that has helped me through over the past 4 years dealing with what we now know is Crohn's Disease.

I have seen Jeremy Camp in concert before I got sick. However, I'm upset that I can't go this time because I've not been able to go do anything like this in a long time, but I have to accept the things I cannot control and accept the things that i can. I may not be able to see Jeremy Camp Live tonight but i can put in any one of his CD's and listen to all his music.

Today I'm thankful for that, even though right now it's so hard to willingly find something to be thankful for right now. I'm thankful for Jeremy Camp's music and the technology so I can listen to these inspiring songs to help me as I lay in my bed sick and just trying to make it through today.

Because "even when I don't see, I still believe"

Upper Endoscopy And A Good Gag Reflex

2011-10-14T19:29:00.000-07:00

ABOVE PIC IS OF THE DIAGNOSIS FROM THE
UPPER ENDOSCOPY DONE TODAY
(Click To Enlarge To Read)

As you can read from the image above, there are more things wrong with me due to the Crohn's Disease. Now I have damage to my esophagus because of the acid and bile build up in my stomach, along with vomiting 1-2 times a week over the course of 6-7 yrs.

The good side to this is the Dr. was able to see that the inflammation in my small intestine had gone down quite a bit from the Crohn's Medication I have been taking, and he was finally able to take a biopsy of it.

However, the Upper Endoscopy didn't quite go as planned. During the procedure, they didn't give me enough medicine to sedate me and my body woke up and I began choking on the tube/scope in my throat. I could feel myself choking and trying to throw up but I couldn't get fully awake. I honestly thought for a few seconds before they quickly shot me with a double dose of sedatives and totally knocked me out, that I was going to choke to death. I couldn't breath and was trying to gasp for air but the scope was in my throat.

The only thing I heard someone say clearly was, "she has a very strong gag reflex" then I was out and the next thing I remember was being told that I was back in my room and needed to wake up and drink something.

Yeah right! It took me over half an hour to be able to open my eyes completely and sit up on the side of the bed. I had never been that knocked out except for when I had surgery, It took me quite a while to even be able to get back into my regular clothes.

Jeremy took a before and after pic of me. The after pic I have no recollection of him telling me he was going to do it, even though he says he did. Looking at them now that I'm awake I laugh at myself. Because honestly what else can you do? After the procedure and I was starting to wake up I was seeing little children or midgets (not sure which) running in a field and I at one point thought I was some where else other than where I really was. I saw glitter falling from the ceiling (again) for some reason I always see glitter falling when I get shot up with these sedatives or pain meds. And pictures flashing fast before my eyes like I was looking through a photo album or slideshow on a computer screen. WEIRD!

So I made it through another day, a little doped up still in the head, but at least we have more answers and within 10 days the biopsies will come back and we'll have an official diagnosis as to what else is going on with me.

Miranda Before Sedation
looking a little nervous but alert and ready to go

Miranda After Sedation
Screwed The Heck Up! Wow!

What Inspires Me To Make It Through Another Day

2011-10-13T09:24:00.000-07:00

As I read my bible daily, I also search out for many of the scriptures and passages that I've marked or underlined that seem to help me through the bad days. The Psalms are always my first to turn to, then I make my way through the rest of the books that I've marked in to remember. And after reading a few of them, I find myself saying, I can make it through this day because God has heard my cry, God has seen my suffering, and God is carrying me through.

Psalm 116 1-4
I love the Lord for he heard my voice; he heard my cry for mercy. Because he turned his ear to me, I will call on him as long as I live. The cords of death entangled me, the anguish of the grave came upon me; I was overcome by trouble and sorrow. then I called on the name of the Lord. OH LORD SAVE ME!

Psalm 118: 17, 18
I will not die but live, and I will proclaim what the Lord has done. The Lord has chastened me severely but he has not given me over to death.

Psalm 121: 1-8
I lift my eyes to the hills--where does my help come from? My help comes from the Lord the maker of heaven and earth. he will not let your foot slip--he who watches over you will not slumber; indeed, he who watches over Israel will neither slumber nor sleep.
The Lord watches over you--the Lord is your shade at your right hand; the sun will not harm you by day nor the moon by night. The Lord will keep you from all harm--he will watch over your life; the Lord will watch over your coming and going both now and forevermore.

Romans 8:15
For you did not receive a spirit that make you a slave again to fear, but you received the Spirit of sonship. And by him we cry, "Abba Father."

Romans 8: 37-39
No, in all these things we are more than conquerors through him who loved us. For I am convinced that neither death nor life, neither angels nor demons, neither height nor depth, nor anything else in creation, will be able to seperate us from the love of god that is in Christ Jesus our Lord.

2 Corinthians 4: 8, 9
We are hard pressed on every side, but not crushed; perplexed, but not in despair, persecuted, but not abandoned, struck down, but not destroyed.

2 Corinthians 12: 7-10
To keep me from becoming conceited because of these surpassingly great revelations, there was given me a thorn in my flesh, a messenger of Satan to torment me. Three times I pleaded with the Lord to take it away from me. But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.

I Won't Let Go

2011-10-12T09:01:00.000-07:00

Being musicians my husband and I knew we had to find "our song" for this time in our lives as we go through this journey together. "I Won't Let Go" has become our anthem, my Jeremy has literally had to hold me and "not let go" of me and has carry me to Jesus so many times. Jesus is my rock but Jeremy is sometimes the vehicle to get me to the rock when I am took weak to carry myself.

I hope to one day be able to play this on the piano and sing it without crying. My thoughts are, that if I can get to the point where I can listen to this song, sing it and play it without crying that means I have made it through the pain and have made it to the end of this darkness that I'm walking through and I'm back in the light.

I Won't Let Go lyrics

It’s like a storm
That cuts a path
It breaks your will
It feels like that
You think you're lost
But you're not lost
On your own
You're not alone

I will stand by you
I will help you through
When you’ve done all you can do
And you can’t cope
I will dry your eyes
I will fight your fight
I will hold you tight
And I won't let go

It hurts my heart
To see you cry
I know it’s dark
This part of life
Oh, it finds us all
But we’re too small
To stop the rain
Oh, but when it rains

I will stand by you
I will help you through
When you’ve done all you can do
And you can’t cope
I will dry your eyes
I will fight your fight
I will hold you tight
And I won't let you fall

Don’t be afraid to fall
I’m right here to catch you
I won't let you down
It won't get you down
You're gonna make it
Yeah, I know you can make it

Cause I will stand by you
I will help you through
When you’ve done all you can do
And you can’t cope
And I will dry your eyes
I will fight your fight
I will hold you tight
And I won't let go

Oh I’m gonna hold you
And I won't let go
Won't let you go
No, I won't

I Have Questions But Still Searching For The Answers

2011-10-12T08:12:00.000-07:00

Since my diagnosis is so new, there are a lot of questions, and doubts that go through my head daily. I am a Christian but sometimes when I'm in so much pain that I can't bare it, I question God and why he is allowing me to go through this, and why after so many years of people praying for my healing has it not come? Even those praying for my healing are asking the same question.

But the the main question running through my head over the past few days is this......

11 years ago I married a man who I thought loved me and truly wanted to spend the rest of his life with me. But after just 4 months of marriage it was clear that was NOT what he intended for our life together.

After 4 months of marriage he became abusive, and over the next 6 months he beat me, raped me, and held me against my will in his grandparents home, who also enabled him to abuse me because they wouldn't do anything to stop him. His grandparents even kept me from using the phone and or answering the phone when my family called and being able to reach out for help.

After 6 months of enduring abuse daily from my ex husband, one night in late October 2000 everything came to a head. After being told so often by my ex husband that he was going to kill me and if I ever tried to leave him and he would hunt me down and kill me, I knew there was no escaping alive from him unless God made a way for me to escape. So I began praying every night for 2 weeks and told God "Lord if he won't let me go, then you have to make so that every time he looks at me he sees you. Because evil cannot stand to look upon the face of God."

So I prayed this every night and 2 weeks later I was sitting in the livingroom, my ex husband comes in looks at me and yells, "GET OUT! GET OUT OF THIS HOUSE, GET OUT OF MY FACE, I CAN'T STAND TO EVEN LOOK AT YOU!" When I heard those words I knew God had heard my prayer.

In just a few minutes my ex husband was throwing me out of the house. All I had was a small bag of clothes and what I was wearing. He finally allowed me to call my family so that they could come and get me.

I had survived and I thought my life was going to get better after that.

But now 10 years after the divorce has been finalized and I have tried to move on with my life. I'm now diagnosed with an incurable disease.

And the question I've been asking God lately is.....

"Why didn't you let him kill me? Why, knowing that I would end up suffering with Post Traumatic Stress Disorder from the abuse I endured at his hands, and now Crohn's Disease?! WHY!? Death would be the end of all suffering and I would be at peace at last.

Since I'm on this honesty kick I might as well keep being honest. I actually sometimes when I'm in so much pain from the Crohn's Disease, and the endless sleepless nights from the night terrors and flashbacks I have every now and then from the Post Traumatic Stress Disorder. I have actually cried out for God to just let me die.

I'm sure I'm not the only person with a debilitating disease or disorder who has cried out the same way in these kinds of moments in their lives at one time or another. Sometimes this life just becomes unbearable and we cry out for relief.

But then I make it through another day and once again I try and find reasons to keep going. Because even though my faith at times is weak, I do have enough to trust God that tomorrow will be a better day.

People have asked me what i see for my life in the future....Honestly, I don't look into the future any longer. All I'm trying to do at this point until we can get this disease under control, is making it through today. Yesterday is gone and tomorrow is not here yet, and God is in control of tomorrow. Today and making it through and staying a live and trying to get through all the pain, questions, and doubts is what I'm focused on right now.

Oh yes I had plans for my future and they were plans I thought God had for me to, but I'm not focusing on them anymore. If they come true, ok then they come to pass, but if they don't I have to accept that they won't. My life is literally in God's hands now. The doctors, my family, my husband, and friends are not in control. No one can heal me or take a way this disease they can only treat it and support me through this new journey in my life. Only God has the power to heal me and I have to totally give my life to him.

So many questions, but still waiting on the answers. Answers that may or may not ever come. That's why Faith is so important even if it's as small as a mustard seed at times.

Miranda You Have Crohn's Disease.........

2011-10-10T16:34:00.000-07:00

I never thought I would be writing a blog. Normally I keep a private journal and don't share it with anyone. But on Sept. 7th 2011 I received a letter that changed my life, and I would never be the same again.
As a result my husband Jeremy feels I should write a blog about my journey.

My journey living with Crohn's Disease.
The Above letter is what I received in the mail on the morning of Sept. 7th 2011. It reads as followed...
Dear Ms. MIRANDA CAVERLEY,
Your colon biopsy does confirm crohns disease. The gastric emptying scan shows intial delayed emptying but at the end of 4 hours the emptying was normal. Let's see how you do on the entedcort and lialda, please call with a progress update in 2-3 weeks. If you are not improved, we will need to go to prednisone. Given the initial delay in emptyingon teh GES, and the new diagnosis of crohns, I think it is important to eventually perform an upper endoscopy to ensure nothing else is going on. We can wait a month or so to do so.

Timeline: End of 2007-Present
For 3 1/2 years I have been in and out of the hospital. Test after Test run (but not the right ones) and on all kinds of different medicine to try and help my "symptoms" But finally in May 2011 I got a new family doctor, one that actually cared about me and didn't just toss me off with a quick look at and write me another round of meds that were only temporarily taking care of the symptoms.

My new doctor right away referred me to Dr. Garuda at Ohio Gastroenterology Group at Mount Carmel West Hospital in Columbus Ohio. Dr. Garuda saw me and started ordering every kind of blood test that could be ran, and a gastric emptying scan (I'll explain what that is later)

So I went and had another Gastric Emptying Scan done to see whether or not I really have Gastroperesis. This test is pretty weird. I had had it done 3 years ago by another gastro dr. and it showed I had gastroperesis which means the nerves in my stomach are damaged. But that was all that Gastro dr. did he gave me a prescription of Reglan and this powdered medicine I was to drink and that was all. My new family dr. was NOT impressed with him either so here I am 3 years later and I'm in worse shape than before. And going into have another Gastric Emptying Scan done

Now before the the "GES" (as we will call it) is done, you can not have anything to eat or drink 6 hours prior to the procedure. You arrive 1 hour before your scheduled time to "prep" your prep is a Nucleur Medicine Tech comes out and takes you to this room where they prepare a meal. They fix you scrambled eggs, here's the kicker....the eggs are radioactive! You eat the eggs making sure you don't get any of the eggs on the floor or table and "contaminate" it. After that you are taken to a room where you will either depending on the way the hospital does their GES tests lie you done on an x-ray board with a little bit of padding and you lie there for 2-4 hours while this machine hangs above your belly and scans your stomach to see how fast or slow the radioactive eggs digest. Or the hospital may have you after eating the radioactive eggs they will have you stand in front of a type of x-ray machine and take a picture of your stomach every hour for 4 hrs. I've had both ways done and let me tell you the picture taking every hour is WAY easier.

So after the test is complete you are then given a paper you must carry with you for 3 days. The paper says you have participated in a test where you ate radiation because say if you are going travel on a plane or go through a security point, you will set off the alarms and scare everyone out of their wits....just kidding.

This time around the test came back that there was a delay in the digesting of my food but that after 4 hours all the eggs had digested. So Dr. Garuda did not diagnose me with Gastroperesis.

However, not long after we got the results back from the GES test, all the blood work I'd had done came back.....It was Not good at all.

At 8:30 a.m. At the end of July 2011 I get a call from Dr. Garuda's secretary Brenda. When I saw they were calling that early I knew something was up. This was the phone call every person prays they never get, and it had just came true for me.

I answer the phone and Brenda tells me she has bad news.
She says, "Miranda your blood work came back and your intestines are severely inflamed, it looks like you may have an intestinal disease. Dr. Garuda wants to get you scheduled for a colonoscopy as soon as possible."
She tells me to give her a call tomorrow after talking with my husband and family about it, to schedule the day for the colonoscopy.

It was like a dream, did I really hear her right DISEASE? I look at my husband Jeremy and tell him everything and I break down and start crying. Immediately I call my Mom, and Grandma and tell them the news. After that Jeremy drives me to my Grandma's to stay the day while he goes to his college classes. It was like someone had punched me in stomach as hard as they could and knocked the breath out of me. I was in total shock...DISEASE!

They next day Brenda calls me and we schedule my colonoscopy. The earliest they could get me in was August 31, 2011 and that was 3 weeks away.

So I suffered through until then, but before then I had to be rushed to the hospital with severe abdomen pains, and found out I had a severe Urinery Trac Infection On top of the vomiting, nausea, stomach and intestinal pains from the possible at this point intestinal disease. The hospital puts me on the antibiotic Cipro and a week later I'm prepping for my colonsoscopy.

The night before the colonoscopy I had to drink 64 oz of Gatorade with a 7 day supply of Miralax in it to clean me out. However, with me already sick to my stomach and having pains in my intestines drinking this stuff didn't work out very well.

I was so sick I was only able to drink half of the 64 oz and the rest I threw up. I was so sick and in so much pain I actually passed out on our couch. My husband Jeremy got no sleep that night and by morning neither of us had had any sleep.

The colonoscopy was scheduled for 9 a.m which meant we had to be there at 8 a.m. and we had an hour and a half drive to columbus. So we met my Mom and she drive us to Columbus and at 8a.m. they called me back to prep me.

The nurses could tell I was very sick and right a way started taking my vitals. I was in so much pain my pulse was 100bpm and my blood pressure was 151/90. As soon as they could they got me to the Operating Room and got an IV started, the moment they gave me a shot of Zofran (anti nausea med) my stomach stopped hurting and my nausea went away. But it wasn't until they gave me the Muscle relaxer did I start to feel good. The moment I got the shot I was in heaven and I didn't care about anything because I was in no pain.

The next thing I know I'm waking up and the colonoscopy is over. The nurse comes in to tell me I have to FART! Yes Fart because until I do I can't leave because they filled me with air. Boy you should have heard all the other patients ripping off. It was like a massive Farting party going on in that clinic...I had to laugh!

But even with that funny moment the nurse had a very worried look on her face. I asked her, "is it bad?" She says, "yes." I say, "Is it something that can be cured?" Her eyes look very sad and she says, "No."

After that my Mom and Jeremy come in to sit with me as we wait for Dr. Garuda. It didn't take long and Dr. Garuda comes in and tells us the news

He tells us that he could not even finish the colonoscopy because when he got to the small intestine he had to stop because the small intestine was so inflamed that he could not even get his little scope in it. He says that it looks to be Crohn's Disease but that they won't know for sure until they get the biopsies back in a week or so. But he said that he is starting treatment now so he put me on Entocort (a steroid specifically for Crohn's Disease) and I will be on that until the middle of November 2011 and he also put me on Lialda (it is used to treat Crohn's Disease and Ulcertive Colitis). I am to also start eating a Crohn's Disease style diet and or drink liquids and soup until the inflammation gets under control so I won't be in as much pain. I got my prescription and a bunch of free samples of the medicine so we could start them right a way, and we headed home.

On Sept. 7th 2011 I received the above letter officially diagnosing me with Crohn's Disease. 3 1/2 years of doctors, tests, meds, being fired from jobs and having to quit jobs because of my health, having a nervous break down and being officially disabled, we now have a diagnosis.

Now it is October 10, 2011 and here I am writing my first blog. Why? Honestly I don't know at this point, my husband believes that through my writings, it may help and inspire others. Will it? Only God knows.

This Friday Oct. 14, 2011 I go have an Upper Endoscopy done because not only do I have Crohn's Disease but Dr. Garuda thinks there may be something going on as well in my stomach like ulcers, hernias etc. and he wants to make sure he has checked every end of me out.....literally. I'm not worried about the Endoscopy because I had this done right before I had my gallbladder surgery 4 years ago. What does worry is what they may find.

On top of having this Endoscopy done, I'm also fighting another Urinery Trac Infection. Which we think is actually the old UTI I had back at the end of August but never got over fully, and has back with a vengeance. I was on the antibiotic Macrobid to fight this UTI and after taking my last round of pills and going for another Urine Test to see if the UTI is gone, I know it isn't. I'm still in pain in my abdomen, and around my kidneys and if I don't go to the bathroom right a way when I have pee pee it hurts like H.E double Hockey Sticks! So I'm also waiting for a call from my family Dr. about the pee pee test results and whether I need another round of antibiotics, I'm opinion YES I DO!

This is my life, and it's only been a month and 3 days since my diagnosis and it's still unbelievable and I'm struggling to come to terms with the fact that I have an incurable disease that I will have to live with for the rest of my life! That's a tough pill to swallow and right now I don't want to, but this is my journey and I am sharing it with you.