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.
Tuesday, November 13, 2012
Thursday, October 18, 2012
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"
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.
Sunday, October 7, 2012
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
Friday, September 21, 2012
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.
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.
Thursday, July 19, 2012
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.....
Friday, July 13, 2012
Meeting My New Gastro Doctor At OSU Hospital
This week has been nothing but being sick and going to doctor appointments and having more tests done.
On Tuesday July 10, 2012 my good friend Dawn took me to my first appointment to see my new Gastro Doctor at Ohio State University Hospital in Columbus. I was so sick the entire time and so weak Dawn had to push me in a wheelchair through the hospital because I couldn't walk very far.
I see my new doctor and he looks and listens to my stomach and intestines. Puts me on a higher dose of the Crohn's medicine I'm already on, has about 15 vials of blood drawn to test me for anything and everything he can think of. Then Schedules me to have a CT Scan of my abdomen. And has me sign papers to have all my records and test results from my last Gastro doctor released.
My friend Dawn is so much like a Mom to me, and she has so much love and compassion for what I'm going through, Because both of her children who are around my age have been diagnosed and fighting Ulcertive Colitis for some years now which is like Crohn's Disease.
I thank God for Dawn and her husband Gary, I couldn't ask for better friends and spiritual parents.
Now lets go to today...
Luckily my appointment for the CT Scan today as in the afternoon so Jeremy despite me being sick all night did get enough sleep to make the over hour drive back to OSU hospital. I wasn't as sick as I was on Tuesday, but that all quickly changed when they had me start drinking the barium for the CT Scan. I told the woman I get sick every time because they make me fast for 6 hours, no water or food. So I can't take my medicine to help my stomach.
The moment that stuff hit my stomach, I was sick. They wanted me to drink 2 full bottles of that stuff, I told them they'd be lucky that I got 1 down me. I got 1 1/2 bottles down and started throwing back up. They weren't happy that I only drank that much and started saying that they won't get a good enough reading. But hey what am I suppose to do when they won't let me take my medicine.
So they went ahead with the test any way, and I was so sick they gave me a barf bag and then the guy doing the test says, "maybe your doctor should have you on medicine to keep you from being nausea's and vomiting"
I told him, "I'm already on medicine for that, but when you guys tell me I have to fast for at least 6 hours no food, water nothing. I can't take my medicine, so I'm gonna be sick"
Needless to say the guy shut his mouth after that and trying to act like he knew all the answers to my problems.
Immediately after the test was over and they told me I could go, I wen to the bathroom and threw up. Then made my way back to the waiting room where I had crackers, water and of course my medicine waiting for me to take.
The crackers, water and medicine helped some but it wasn't until I got a meal in me that my stomach started to calm down.
On our way back from Columbus when I have to go to the hospital, Jeremy and I always treat ourselves to a nice meal at Bob Evans restaurant in South Bloomfield. It's now become our little tradition, and at times it's the only nice thing we get to do the whole day when we've had to be at the hospital. It's so worth the money spent when we get to have some time together to just relax and eat a good meal, even if it does make me sick hour later.
So now we play the waiting game, waiting for the test results to come back, and waiting to see what this new Gastro doctor will do to help me. When I find out the results I'll let you know.
Until then, just gotta keep focused on making it through today and hope tomorrow will be better.
On Tuesday July 10, 2012 my good friend Dawn took me to my first appointment to see my new Gastro Doctor at Ohio State University Hospital in Columbus. I was so sick the entire time and so weak Dawn had to push me in a wheelchair through the hospital because I couldn't walk very far.
I see my new doctor and he looks and listens to my stomach and intestines. Puts me on a higher dose of the Crohn's medicine I'm already on, has about 15 vials of blood drawn to test me for anything and everything he can think of. Then Schedules me to have a CT Scan of my abdomen. And has me sign papers to have all my records and test results from my last Gastro doctor released.
My friend Dawn is so much like a Mom to me, and she has so much love and compassion for what I'm going through, Because both of her children who are around my age have been diagnosed and fighting Ulcertive Colitis for some years now which is like Crohn's Disease.
I thank God for Dawn and her husband Gary, I couldn't ask for better friends and spiritual parents.
Now lets go to today...
Luckily my appointment for the CT Scan today as in the afternoon so Jeremy despite me being sick all night did get enough sleep to make the over hour drive back to OSU hospital. I wasn't as sick as I was on Tuesday, but that all quickly changed when they had me start drinking the barium for the CT Scan. I told the woman I get sick every time because they make me fast for 6 hours, no water or food. So I can't take my medicine to help my stomach.
The moment that stuff hit my stomach, I was sick. They wanted me to drink 2 full bottles of that stuff, I told them they'd be lucky that I got 1 down me. I got 1 1/2 bottles down and started throwing back up. They weren't happy that I only drank that much and started saying that they won't get a good enough reading. But hey what am I suppose to do when they won't let me take my medicine.
So they went ahead with the test any way, and I was so sick they gave me a barf bag and then the guy doing the test says, "maybe your doctor should have you on medicine to keep you from being nausea's and vomiting"
I told him, "I'm already on medicine for that, but when you guys tell me I have to fast for at least 6 hours no food, water nothing. I can't take my medicine, so I'm gonna be sick"
Needless to say the guy shut his mouth after that and trying to act like he knew all the answers to my problems.
Immediately after the test was over and they told me I could go, I wen to the bathroom and threw up. Then made my way back to the waiting room where I had crackers, water and of course my medicine waiting for me to take.
The crackers, water and medicine helped some but it wasn't until I got a meal in me that my stomach started to calm down.
On our way back from Columbus when I have to go to the hospital, Jeremy and I always treat ourselves to a nice meal at Bob Evans restaurant in South Bloomfield. It's now become our little tradition, and at times it's the only nice thing we get to do the whole day when we've had to be at the hospital. It's so worth the money spent when we get to have some time together to just relax and eat a good meal, even if it does make me sick hour later.
So now we play the waiting game, waiting for the test results to come back, and waiting to see what this new Gastro doctor will do to help me. When I find out the results I'll let you know.
Until then, just gotta keep focused on making it through today and hope tomorrow will be better.
Friday, June 22, 2012
College Degrees, STAPH Infection, and Crohn's
On June 8, 2012 my husband graduated with his Associates Degree From College. This week he began his classes for his Bachelor's Degree In Communications. I could not be more proud of Jeremy.
The only down side, is that I am still sick and fighting day to day to deal with the diseases that attack my body.
At the End of May Beginning of June I had a Knot show up on one of my breasts. Immediately I called the doctor because in just a day and a half it grew to the size of a quarter. The doctor took one look at it and said, "It's another STAPH Infection."
I've been fighting with STAPH Infections and MRSA ever since I got Crohn's Disease. After this current round of antibiotics I was put on to fight off the STAPH Infection. I have now in just over 2 years, been on antibiotics 9 times to fight these horrible sores. The other bad thing about these sores is, every time I get one on my body when it goes away, it leaves a scar that looks like a small bruise.
I have numerous scars from these sores and sadly I am stuck with them for the rest of my life, and if I continue to get STAPH Infections I will just keep getting more scars.
For a few weeks after I was off the antibiotics I had been having more good days than bad. I even got to go and visit the Chillicothe Bikers Church one Sunday and a Wednesday for their bible study. And even got to attend their Hog Roast for a couple of hours Last Saturday.
But during the Hog Roast I began getting sick, and had to leave after 2 hours of being there. Ever since last Saturday I have continued to deteriorate . To the point that for 2 days this week, I have been bed ridden, and have had to go back to taking my anti vomiting medicine and pain pills to just function some what normally. The other day while Jeremy was in class I was alone and working in our bedroom to put laundry away. Suddenly I had a pain in my intestines hit me and I nearly collapsed on the floor. I grabbed the phone, called my grandma and had her to stay with me on the phone until the pain and diarrhea passed. I hadn't had that happen in nearly 4 months, and to be alone and nearly collapsed is one of the scariest things.
Jeremy has not had much sleep in 2 days from staying up late and trying to comfort me and help me as best he can.
I'm praying that the Crohn's is not coming out of remission already, because I don't want to be bed ridden again for God knows how long.
I go back to my family doctor next Friday, and I have less than a month until I see my new Gastro Doctor at OSU.
Depression has been fighting me very hard lately, and I'm trying desperately to stay positive but there are days I just break down and cry out to God to help me make it through today. Because maybe tomorrow will be better.
The only down side, is that I am still sick and fighting day to day to deal with the diseases that attack my body.
At the End of May Beginning of June I had a Knot show up on one of my breasts. Immediately I called the doctor because in just a day and a half it grew to the size of a quarter. The doctor took one look at it and said, "It's another STAPH Infection."
I've been fighting with STAPH Infections and MRSA ever since I got Crohn's Disease. After this current round of antibiotics I was put on to fight off the STAPH Infection. I have now in just over 2 years, been on antibiotics 9 times to fight these horrible sores. The other bad thing about these sores is, every time I get one on my body when it goes away, it leaves a scar that looks like a small bruise.
I have numerous scars from these sores and sadly I am stuck with them for the rest of my life, and if I continue to get STAPH Infections I will just keep getting more scars.
For a few weeks after I was off the antibiotics I had been having more good days than bad. I even got to go and visit the Chillicothe Bikers Church one Sunday and a Wednesday for their bible study. And even got to attend their Hog Roast for a couple of hours Last Saturday.
But during the Hog Roast I began getting sick, and had to leave after 2 hours of being there. Ever since last Saturday I have continued to deteriorate . To the point that for 2 days this week, I have been bed ridden, and have had to go back to taking my anti vomiting medicine and pain pills to just function some what normally. The other day while Jeremy was in class I was alone and working in our bedroom to put laundry away. Suddenly I had a pain in my intestines hit me and I nearly collapsed on the floor. I grabbed the phone, called my grandma and had her to stay with me on the phone until the pain and diarrhea passed. I hadn't had that happen in nearly 4 months, and to be alone and nearly collapsed is one of the scariest things.
Jeremy has not had much sleep in 2 days from staying up late and trying to comfort me and help me as best he can.
I'm praying that the Crohn's is not coming out of remission already, because I don't want to be bed ridden again for God knows how long.
I go back to my family doctor next Friday, and I have less than a month until I see my new Gastro Doctor at OSU.
Depression has been fighting me very hard lately, and I'm trying desperately to stay positive but there are days I just break down and cry out to God to help me make it through today. Because maybe tomorrow will be better.
Thursday, May 31, 2012
May 2012 Update: Update From Doctors Appointment
Miranda gives an update on the latest doctor appointment
Saturday, May 26, 2012
Updates From April 2012: Heart Monitors And Drums
April 13, 2012 Miranda gives us an update on her heart monitor and the various testing to be done. Easter highlights and other news.
April 22,2012 Miranda gives an update on her tests she just had.
April 28, 2012 Miranda Caverley of JMC Ministries playing drums at Crohn's/Colitis Awareness Event In Chillicothe Ohio. Miranda has Crohn's Disease and due to her illness has been unable to play drums and perform publicly in over 2 years. It was a dream come true to be able to play for an event especially an event for the disease that she has.
Miranda talks about the Crohn's & Colitis Team Challenge Event in Chillicothe, OH. How she got to make a dream come true again & play drums!
Wednesday, March 28, 2012
Finding Gladness In All Situations
Since my last post, my health has again taken a turn for the worst. After only 3 weeks of having the Crohn's in remission, it has come back with a vengeance. My family doctor put me on Predinsone (my second round of it in 2 months) to try and help with the inflammation and severe pain. But alas, yesterday I took my last pill and I am not getting better.
I am back to eating ensure and soft foods, which doesn't give me much energy. And so far has made little difference on my pain. The other worry now is that my blood pressure is continually staying Very high due to the pain. I've been having chest pains and my pulse will sometimes go up to 111 beats per minute just when I am lying in bed. While my blood pressure is in the 140's/90's.
Jeremy and I are monitoring my blood pressure and if we don't see changes in it in another day or so we are calling the doctor to see what he wants to do next.
Just before I was put on the Predisone, it showed on the weight scales that I had lost 3 pounds of the 5-10 lbs I had gained from my last round of predinsone. I can only pray that I haven't gained more...because that will also have an effect on my blood pressure and heart if I continue to gain weight.
So how do you find gladness in all this? It is very hard at times, but after reading the book "Pollyanna" of which I'm sure many of you have seen the movie with Haley Mills, I began to play the "Glad Game" As Pollyanna calls it. I do recommend reading the book (it's in some ways better than the movie) especially this part I'm about to share with you. If you have a kindle or the app for the kindle you can download Pollyanna for FREE. I recommend it especially since it's free.
Anyway, I was reading Pollyanna one day when the Crohn's had me bed ridden, and I came towards the end of the book, after Pollyanna was hit by a car and paralyzed. Everyone was trying to get her to play the Glad Game that she had taught them. They were trying to think of something to be glad about her being stuck in bed and not being able to walk. Now how anyone could find something glad about being paralyzed and bedridden is very hard to comprehend, but Pollyanna did.
And what she said, my me cry so hard, and even cry now....When asked what she could be glad about being stuck in bed and paralyzed, Pollyanna said, "I can be glad for the times I had my legs."
She was able to be glad for the time God allowed her to have her legs, and all that she did with them and all the lives she as able to touch and change when she had the use of her legs!
And at that moment, being bed ridden because of this disease that is wreaking havoc on my body, I was able to be glad.
Maybe one day I will be able to get better, just as Pollyanna did after having a surgery to repair her back. And then be able to go out again and be able to do ministry, play music and help in churches and my community again as I use to.
But if I can't, I can still be "Glad" for the times I was able to go out and make a difference in people's lives, just as little Pollyanna did.
I can be glad for the time I had the strength to play my drums and travel. Even though now they sit in the corner of our Office collecting dust for over a year. But I believe one day I will get better enough to sit down and play again as I use to. With all the energy I use to have. I can't imagine God giving me a gift at the age of 3 years old, to only take it away when I am 30.
I can be glad for all the times I was able to go and do puppets and teach children about Jesus and how he loves us. And I can be glad that I can still even from my bed be able to sit here and type this despite the pain I'm in. For maybe just maybe it will help someone else, to find gladness in the face of their adversity.
In my life I never imagined at the age of 30 years old I would be many days bedridden and confined to the upstairs of my home. But here I am......The journey i envisioned my life to be on was not anywhere near where it has gone. But looking back over the past 4 years I thank God for the good times and the great adventures I have been able to have before I got so sick with Crohn's and Gastroparesis.
I continue to hold out on faith that God will heal me. Whether it come directly from him touching me or from the hands of the doctors that he will point me towards to help me. God did not create me to be an invalid without a purpose. And I know some way some how he will still fulfill that purpose even through this broken vessel that I am now.
I am back to eating ensure and soft foods, which doesn't give me much energy. And so far has made little difference on my pain. The other worry now is that my blood pressure is continually staying Very high due to the pain. I've been having chest pains and my pulse will sometimes go up to 111 beats per minute just when I am lying in bed. While my blood pressure is in the 140's/90's.
Jeremy and I are monitoring my blood pressure and if we don't see changes in it in another day or so we are calling the doctor to see what he wants to do next.
Just before I was put on the Predisone, it showed on the weight scales that I had lost 3 pounds of the 5-10 lbs I had gained from my last round of predinsone. I can only pray that I haven't gained more...because that will also have an effect on my blood pressure and heart if I continue to gain weight.
So how do you find gladness in all this? It is very hard at times, but after reading the book "Pollyanna" of which I'm sure many of you have seen the movie with Haley Mills, I began to play the "Glad Game" As Pollyanna calls it. I do recommend reading the book (it's in some ways better than the movie) especially this part I'm about to share with you. If you have a kindle or the app for the kindle you can download Pollyanna for FREE. I recommend it especially since it's free.
Anyway, I was reading Pollyanna one day when the Crohn's had me bed ridden, and I came towards the end of the book, after Pollyanna was hit by a car and paralyzed. Everyone was trying to get her to play the Glad Game that she had taught them. They were trying to think of something to be glad about her being stuck in bed and not being able to walk. Now how anyone could find something glad about being paralyzed and bedridden is very hard to comprehend, but Pollyanna did.
And what she said, my me cry so hard, and even cry now....When asked what she could be glad about being stuck in bed and paralyzed, Pollyanna said, "I can be glad for the times I had my legs."
She was able to be glad for the time God allowed her to have her legs, and all that she did with them and all the lives she as able to touch and change when she had the use of her legs!
And at that moment, being bed ridden because of this disease that is wreaking havoc on my body, I was able to be glad.
Maybe one day I will be able to get better, just as Pollyanna did after having a surgery to repair her back. And then be able to go out again and be able to do ministry, play music and help in churches and my community again as I use to.
But if I can't, I can still be "Glad" for the times I was able to go out and make a difference in people's lives, just as little Pollyanna did.
I can be glad for the time I had the strength to play my drums and travel. Even though now they sit in the corner of our Office collecting dust for over a year. But I believe one day I will get better enough to sit down and play again as I use to. With all the energy I use to have. I can't imagine God giving me a gift at the age of 3 years old, to only take it away when I am 30.
I can be glad for all the times I was able to go and do puppets and teach children about Jesus and how he loves us. And I can be glad that I can still even from my bed be able to sit here and type this despite the pain I'm in. For maybe just maybe it will help someone else, to find gladness in the face of their adversity.
In my life I never imagined at the age of 30 years old I would be many days bedridden and confined to the upstairs of my home. But here I am......The journey i envisioned my life to be on was not anywhere near where it has gone. But looking back over the past 4 years I thank God for the good times and the great adventures I have been able to have before I got so sick with Crohn's and Gastroparesis.
I continue to hold out on faith that God will heal me. Whether it come directly from him touching me or from the hands of the doctors that he will point me towards to help me. God did not create me to be an invalid without a purpose. And I know some way some how he will still fulfill that purpose even through this broken vessel that I am now.
Friday, March 9, 2012
In Remission, But Still Struggling
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.
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.
Friday, February 17, 2012
The 6 Month Wait......Happy Valentines Day
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.
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.
Sunday, January 22, 2012
More Tests, and New Doctors
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.
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.
Monday, January 2, 2012
Starting 2012 off With Prayer
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.
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.
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