Needing To Get a few things off my chest

I get so tired of dealing with this disease.  The Pain, the constant diarrhea/bathroom breaks, and of course the not being able to go anywhere because there is a Flu epidemic going on and if I catch the Flu I more than likely will be in the hospital because the Humira medication deteriorates my immune system so I can't fight off any illnesses.

I have been on Humira since September 2012 and I'm still in severe pain. Like last night after eating a new recipe I tried out I have been up sick all night and all day in severe pain because I ate some boiled veggies, grilled chicken and all put into a pot of cream of chicken soup to make like a chicken pot pie and you eat it with biscuits I have been none stop sick.  If I'm not just eating potatoes for my only source of veggies, then I am even more sick it seems, and more times than not it doesn't matter what I put in my stomach it all makes me sick.

I'm so tired of waking up 2-3 times during the night with severe stomach/abdominal pains to the point I'm vomiting or dry heaving every morning and even popping nausea pills I still sometimes throw up.    Every morning like clock work between the hours of 6-8a.m. I'm up dry heaving or vomiting and keeping Jeremy awake and having to take care of me. Getting me medicine, and crackers or the bucket to catch my vomit.

I keep reading my bible and trusting in God that he sees my suffering and won't allow me to suffer for nothing, but at times especially since we have been experiencing so many deaths lately I wonder why God keeps me alive even though he sees that I'm suffering to the point I cry for death to ease the pain from the Crohn's.  And no amount of pain meds even dull the pain that seems to spread over my entire body at times and is unbearable.

So many people have these ideas that they have this miracle drug or miracle "something" that will cure me. I get so tired of these people and I'm just going to be honest.  Because I have tried so many "Miracle" Drugs that NEVER work and we have spent hundreds of dollars on these "Miracle" Drugs and I will Not try any more.

We have tried diets, meds, "miracle" drugs and prayer and nothing is easing my pain.  The only thing I don't give up on is prayer because it is all I have left. For God is the only one that can heal me.

It seems the doctors really don't know what to do and are pulling at strings.  They say Oh you aren't bad enough to hurt to the extent you are. Yet they say I have active crohn's in my small intestine and I also have ulcers throughout my intestines, but I'm not suppose to be in pain.  YOU TRY TAKING A POOP ON A ULCER! Is what I want to say to them and have them tell me if doesn't hurt like Hell?

I go back to the doctor Next month for my 3 month check up and to see how I've improved, but yet I have not improved.

On top of all this I'm fighting to get help to afford my Humira injections, for without any help I will have to pay over 400 dollars every 3 months to stay on this medicine and I don't have that money.  I've applied for help but am still waiting to see if I will qualify and if I don't then I don't know what will happen to me.

And while trying to get his Bachelor Degree Jeremy is continuing to take care of me and do all the shopping, helping with house work and taking care of me when I am too sick to take care of myself.  It is too much at times for 1 person to handle but he continues to do an amazing job at juggling college, ministry work and me.

So today has been a really bad day, and I needed to get this off my chest and vent.  Sorry if this may have been to honest for some but this is what a person with Crohn's deals with every day of their life.

JMC VLog Episode 36: Smart Pills, Ministry, and More Car Wrecks

Jeremy and Miranda share:

Jeremy shares about being in another car wreck just 2 months after their first one.
Finishing Fall Semester in College

Being interviewed for local newspaper
https://www.facebook.com/photo.php?fbid=10151992112568912&set=pb.259240778911.-2207520000.1357789212&type=3&theater

Becoming a Blogger for the P.P. Simmons syndicated blog
http://www.ppsimmons.blogspot.com/

Miranda shares about her continued fight with crohn's disease.
starting on humira and it's side effects and going through what is called the "Smart Pill" Procedure.
And in all this having to miss the holidays with her family again for the 4th year in a row due to Crohn's.

The Results from the Smart Pill Procedure Are In

Today I returned to OSU Hospital to receive the results from the Smart Pill Procedure I had done last week. 

What we know, is that I still have active Crohn's Disease in the bottom part of my small intestines, and I have ulcers in my large intestines.  Luckily these ulcers are not very big and are not bleeding, but still are causing me pain 24 hours a day. 

The Doctor says the Humira injections are working and the Crohn's disease is getting better but it will take time to get me into complete remission.  He also believes all my symptoms are not just from Crohn's disease but also the Gastroparesis that I fight as well. 

So here is the what is happening to treat my Crohn's disease and Gastroparesis and try to get me to where I can live a "more normal" life again. 

1. I am FINALLY able to go off the dreaded Prednisone

2. The Doctor has increased my Prilosec (antacid) medicine to try and get the Gastroparesis under control due to all the acid reflux and stomach pains I've been having (this does not include the intestinal pains from the crohn's disease)

3. The doctor has put me on a new medication that is to try and help get my excessive bowel movements under control.  He hopes this medication will get me running to the bathroom only 2-3 times a day compared to the 6-7 times day.  The only thing about this medication is that it is actually an antidepressant medication, and there are ALOT of bad side effects that go along with it like.....Suicidal thoughts, violent behavior, panic attacks, extreme mood swings.  And the last time I was on an antidepressant I ended up having all these symptoms and had to be put in the hospital and detox for a month.  So you can imagine I'm am very nervous about taking another medication with these possible side effects knowing I get them every time I've been put on something like this and it turned bad. 

But with no other options right now I'm going to start this new medication tonight, but I've already said the moment I start feeling like I'm losing my mind, I'm not taking the medication anymore and calling the doctor right a way.  I don't want to end up running over Jeremy's foot with the car again like I did when I was on meds like this the last time. Let's just say that incident was horrible and Jeremy nor his foot will never forget it.

I'm praying that this new medication will work and that God does not allow me to have these "possible" side effects because they are terrifying to deal with to say the least, and I desperately need something to help me from running to the bathroom 6-7 times a day because I'm tired of living in my bathroom. 

But for now I'm still sick and spending my days either in bed or on the couch resting and trying to allow these medications to work and hopefully get me back to remission and I can start to live again.

I return to OSU Hospital for a follow up appointment in February to see how the new medication change is going.

That's all I have to update you on for now, just keep me in your prayers as I continue my fight against Crohn's and Gastroparesis and pray that one day scientist and doctors can find a cure.

You've heard of the Smart Phone, But What About The Smart Pill? Pill with a microchip that you swallow To fight Crohn's

Yes you read the title of this blog right! No you have not stepped into an episode of Fringe, or Star Trek. This is a reality The Smart Pill!

And Guess who gets to swallow this Smart Pill?! ME!!!!

Here is the info on this "Smart Pill"

Smart Pill To Fight Crohn's Disease, Colitis And Colon Cancer

The iPill (haven’t we had enough with the “i” yet?) by the newly acquired Novartis subsidiary Proteus Biomedical. The pill has embedded ingestible sensors which deliver valuable information to physicians. These sensors can track vital signs or even monitor a patients ability to stick to their medication regiment. Information from the pill is transmitted to a receiver placed on, or embedded in the skin of the patient. All this technology is powered by your own body using the energy of your stomach acid. Information from the receiver can then be sent to a patients mobile phone and then onto the Internet for your physician to view. Another key advantage of smart pills is their ability to effectively target specific areas of the stomach and intestine. This results in lower doses of drugs needed and therefore lowered side effects.

With the sale of Proteus Biomedicals, CEO Andrew Thompson will become this much closer to seeing his dream of “better, more affordable and more available” technology in the pills patients take every day. Hopefully, in the coming years. patients suffering from Crohn’s disease, colitis and colon cancer will find more effective treatments via technology.

So to put it in every day person terms, I will go to the hospital on Monday swallow this first pill to see if I have any kind of bowel obstruction, then the next day Tuesday go to have an x ray done of my abdomin to see if I pooped out the pill.  If I have passed the pill then we schedule my appointment to go and swallow the "Smart Pill" 

When I go to the appointment to swallow the Smart Pill it will be an 8 hour event. I go to the Gastro clinic swallow the pill, then wait 8 hours! Then after the 8 hours have passed return to the Gastro clinic where they will then finish the procedure. But during the 8 hours the pill will be taking pictures of my GI tract as it makes it way through my body which in turn sends the images to a computer at the Gastro clinic. 

Pretty Crazy Sci Fi stuff huh. All I can do is pray that this test is worth doing and that it will show what is going on and why I'm in so much extreme pain and whether or not the Humira Injections are working.  

As more information comes in on this procedure I will be posting more blogs and keep you all updated.  Keep praying for me friends, they are all I have to lean on as I continue my fight against this disease and the hope that God will heal me.

 

JMC Vlog Episode 35 Car Wrecks, Crohn's Disease, & Wedding Anniversary

Miranda gives an update on what has been happening since May.  Miranda shares about her continued fight with Crohn's disease, surviving a very bad car wreck, and celebrating she and her husband's 5th wedding anniversary in the midst of all of this.

Link To Miranda's Blog Site "Miranda Writes"
http://www.mirandacwrites.blogspot.com

Link To JMC LIVE Wedding Anniversary Special
http://youtu.be/z3yG4r9VvuE

Happy 5 Year Anniversary Darling

Tomorrow Sept. 22nd I will be celebrating my 5 year wedding anniversary with my husband Jeremy.  It is another milestone in our lives, every year we care together I count special because it's another year we survived this disease and have not allowed everything we face to tear us apart.

The stats on a couple like Jeremy and I are not good. 85% of all couples who deal with an incurable disease or Chronic Illness in their marriage end up divorced.  The Disease takes it's toll on the marriage and it falls apart in most cases. 

But only through faith in God and his unfailing strength and remembering the vows to made on our wedding day have Jeremy and I been able to survive these dark times we have and are facing in our life together. 

On Sept. 5th 2012 another horrible event happened in our lives.  While driving home from church that night we were in a very bad car accident. Jeremy was not injured other than a very badly bruised leg and chest from the seatbelt and the airbag.  I had to be taken in an ambulance to the hospital because it was feared I may have a broken left wrist and injured my neck. By the Grace of God I only had a severely sprained wrist and a contusion to my neck where the seat belt slammed into it.

The people in the other vehicle 2 of them were taken to the hospital and treated while a 3rd was life flighted to another hospital for her injuries. Luckily and thanks to God watching over us all, everyone will be ok and recover from their injuries.

But that night I was not sure right when the accident happened if this was to be the end of my life, Jeremy's life, or both our lives together.

But I am still here and so is Jeremy and we are celebrating another anniversary.  Clearly God is not done with me, and he has work for me to do. I'm just not sure what at times.

Yesterday Sept. 20th was another memorable day.. Because I started on Humira for my Crohn's Disease.  This medication is something I thought I would never have to be on in my entire life.

Humira is an injection shot I have to give myself every other week to try and suppress my  immune system so that it doesn't attack my intestines and keeps the Crohn's disease in remission. 

A nurse had to come out to our house and show me how to do everything. This made Jeremy extremely nervous and he didn't take this very well. Not just that but knowing the possible side effects of this medication is enough to scare you to death.  And it took it's toll on him. 

Jeremy just feels so helpless when it comes to this disease, because he's a problem solver and he just can't solve the problem of me and at times it makes him break down seeing me in so much pain.  Seeing me having to stab needles into my body to inject medicine that "might" help, being poked and prodded, having tests after tests run that have no good results over the past 4 years.  It's a lot for someone to deal with and I myself don't deal with it very well at times either. 

And Jeremy is not the only one that feels like this, it has taken such a toll on my family and when my Grandma found out that I was going to be put on Humira she was so scared, thinking of me giving myself a shot and not knowing how my body would react to the medicine and wondering if I would end up in the hospital from some very bad reaction. But after I took her my training kit over and showed her it and she looked through the information she calmed down some. But still knowing that a loved one is that sick they have to be on this intense of a medication is more than they can bare at times, I can see it in their eyes.

Jeremy tells me sometimes, he feels like he's losing me.  Because I'm not the Miranda he married 5 years ago, and met 6 years ago.  Back then I was healthy and full of life going here and there.  Miss optimistic Miss Independent. No Fear and living life to the fullest. 

That person doesn't exist anymore right now. I am Miss Dependent upon my husband and family to help me. I am at times full of Fear of the unknown, and I am NOT able to live life to the fullest as I wish I could.  I am at times just existing in this world without knowing why, other than God has some plan for me and there is a reason for my existence on this earth.

My Greatest joy in-spite of everything is that when I was healthy and when I have a good day without pain and have some energy, I did and do LIVE!! I have amazing memories I think back on daily when I am stuck in my bed sick.  I have known the love of a wonderful man and have made it 5 years with him and hope to make it another 5 years, 10 year 20 years and even longer with him for as long as God sees fit to have me on this earth.

This month and the past 4 years have been an uphill battle but we just have to keep fighting. Because I have faith that my suffering is not in vain. For that is what the Bible tells us, and I think of Jesus and his suffering how much more pain and anguish he went through than what I am going through now. And HIS Suffering was not in vain, for he saved the whole world from Hell, so surely if God would not allow his only son to suffer in vain then we surely will not either.

My Knight In Shining Armor

My Knight In Shining Armor

By Miranda Caverley

For My husband Jeremy

Pain envelopes me.

Tears fall from my eyes,

Screams escape my mouth

as once again the diseases attack my body.

Hands try to comfort and heal

that which there is no cure for.

As the pain continues to swallow me up

like quicksand.

My knight in shining armor stands watch

Trying to fight the demons that attack me.

He wipes a tear from his eye 

for he knows he is fighting a losing battle.

But yet he stands watch over me.

His love for me unfailing 

and forever faithful until the end.

My knight is my heart helping me to keep going 

even as I fight against the will to give up and die.

My heart keeps me alive and to continue to fight.

Fight the diseases and demons every day.

His love keeps me.....