Despite all the terrible things going on with my health some good things have happened over the past few weeks since I last posted.
The day after my last post Saturday Nov. 19th with the help from my Grandparents, Dad, his fiance' and my husband Jeremy. I was able to go to the event "One Night Without A Home" that was held in our town of Chillicothe Ohio to raise awareness about homelessness.
We had a booth for JMC Ministries and gave away lots of stuff about homelessness. I got to talk to many people about the "Smitten Mitten Expedition" where I make hats and scarves and fleece baby blankets with the help of my friend Dawn. I shared about my diagnosis with Crohn's and how through this disease I started making the hats and scarves to try and still make a difference in my community despite the fact I'm home and bed bound many days.
My husband Jeremy got to speak at the event about how he was homeless for 2 years in Houston Texas when he was just 19 yrs old. And through the help of many was able to make to where he is today.
We also held a raffle at our booth and raffled off 18 books about homelessness written by our good friend Dr. Jeremy Reynalds who is the founder of the largest family homeless shelter in New Mexico. We raised over $83.00 to help the local homeless shelter in Chillicothe Ohio.
The only sad thing about the entire event was that I really paid for it the next day. I got even more sick despite the weather being nice and was down sick with the chest cold for over a week and due to my immune system being so shot I'm still not over the cold and because I'm still on my antibiotic for the Cdiff I can't take anything to get rid of it.
I was suppose to go to my Gastro Dr. appointment the day before Thanksgiving day, but because I was so sick and I'm so prone to catching any virus that someone may have in an inclosed space like the dr.'s office my Doctor Cancelled my appointment to keep me safe and try to give me a chance to get better.
So, with that news we were able to breathe a little easier and I got to stay and bed and rest the hold day before thanksgiving. And Thanksgiving day even though I was still sick my Grandma told Jeremy to bring me over to have Thanksgiving with them since it was only going to be just her, grandpa, and my Dad there. The only thing that went good on Thanksgiving was the fact that everything I ate from the Turkey to the mashed potatoes and noodles did NOT mess up my Crohn's! I'm thankful I got one day to enjoy without abdominal pain.
But since the Gastro Dr. cancelled my appointment to allow me to get better, they rescheduled my appointment for Dec 23rd. As of right now I don't know what they are going to do other than talk about how I'm doing and see if they need to try something new to help my Crohn's get into remission faster.
As of today though I'm still fighting this cold and though it has gone out of my chest I still keep sneezing, coughing, achy and running a low grade fever nearly every night for a few hours. I can't take any antibiotic or stuff for it because I'm still on the antibiotic to get rid of the Cdiff until at least Friday. And I'm sure after that the Dr. will want to do another test to see if the Cdiff is gone or not. Not knowing which is causing it between the Cdiff and the Crohn's but I've been having severe abdominal pains over the past 3 days the other night Jeremy and I were literally up for over 24 hours because I was in so much pain and no amount of pain meds would help it. So by 8a.m. Tuesday Morning we were exhausted and Finally the abdominal and stomach pains eased up enough where I was able to sleep until 4p.m.
Some people are saying that I'm hurting because of my diet....Well I hate to them, but they are wrong. How can it be my diet when most days I'm living on Ensure drinks, and eating either boiled or grilled chicken, ramen noodles and toast and crackers because I can't hold anything else down? Even my family is starting to believe that it doesn't matter what I eat or not eat between the antibiotics reeking havoc on my stomach and intestines and the Crohn's Disease reeking havoc as well. I'm in a lose lose situation until the medications start to really work.
There are days like today I can't make it through on my own and I have to just pray and ask God to carry me through today and hope and pray tomorrow will be better.
Wednesday, November 30, 2011
Friday, November 18, 2011
What It Means To Be Broken
This week has honestly been the worst I've endured yet fighting Crohn's and today it got even worse.
Since last week I have been fighting to get new medication for my Crohn's Disease because, the medication "Lialda" I was on my prescription drug plan is refusing to cover it and so forced my Dr. to switch me to what is called "Asacol". I got this after a week and 2 days of fighting between the pharmacy, the doctors office and the prescription drug plan company. And That's just one fight.
In the midst of fighting to get the medication, I was to have a stool culture done to check and see if I have any kind of infection in my stool because where I contracted Cdiff 2 months ago. Well we had to fight 3 days to get the fax sent to the hospital lab we use. Because the dr.'s secretary was sending it to the wrong lab.
Then today I wake up and I am coughing up infection out of my chest. So now I've caught the beginning of an upper respiratory infection/chest cold. So I'm in bed all day today running a fever, aching all over, taking mucinex D to try and cough the infection out of my chest before I get too bad. I'm thinking about calling the doctor to make an appointment to get medication to get rid of this infection. Because my immune system is so shot and I'm malnourished from not being able to eat good nutritious foods because of the Crohn's Disease and I don't see any other way I'm going to get rid of it.
This evening around 3:00p.m. everything came crashing down on me and my husband.Less than 24 hours after turning in my Stool Sample for Testing, the Gastro Dr.'s office called. I knew something wasn't right because the person who called was actually another Dr. that works in the same office as my Dr. when normally it is the Dr.'s assistant who makes these calls.
The Dr. tells me "Mrs. Caverley, your stool culture came back and I have bad news. You have Cdiff again. We are calling you in another round of antibiotics but this time instead of being on them for 1 week you will be on them for 2 weeks and taking these pills 4 times a day."
That's when i started to cry on the phone and apologized to the Dr. for crying but told him that why I'm crying is because i woke up this morning with what seems to be an upper respiratory infection, and now I'm being told I also have Cdiff and I'm still fighting to get my Crohn's Disease into remission on top of it all.
He felt so bad for me and tried to console me on the phone. But honestly there really isn't anything anyone can do. Crohn's is also an auto immune deficiency disease and so I am more susceptible to getting all kinds of infections as well as any kind of communicable diseases like the flu, colds, STAPH, MRSA etc.
We have been told to look into buying surgical masks for me to wear when I have to go out in public to the stores, hospitals, dr. offices etc. because if I don't I might keep getting sick constantly. And that makes me feel really bad because I know if people see me wearing one of those masks they're going to think I'm capable of giving them something which in reality is the opposite. I'm trying to keep "them" from giving me whatever they have. Just one more thing to make me feel like a FREAK!
To try and put what I'm going through into words is so hard because honestly you can't grasp the enormity of the situation unless you are sitting here with me hearing me say it to you. As someone told me once a few weeks ago when they called. They said, "When I read your posts and blogs I didn't grasp the severity of your situation until I heard you tell it over the phone.
I guess it's just one of those things you have to experience it to understand it.
So no happy, inspiring things to share today because I'm truly broken and my faith is actually wavering. I keep asking God WHY!!!!!! Why do you keep allowing me to suffer more and more when so many are lifting me up in prayer to either be healed or have my suffering decreased so that it is more bearable. I myself have reverted to one line prayers like "God help me to get through this day." "God ease the pain so I can eat and not be malnourished." Those kinds of prayers I've given up on the prayer of healing because I prayed that prayer for 4 years and there has been no healing. So I have accepted that God is not going to heal me and for some reason wants me to go through this. I don't know anymore.............
Since last week I have been fighting to get new medication for my Crohn's Disease because, the medication "Lialda" I was on my prescription drug plan is refusing to cover it and so forced my Dr. to switch me to what is called "Asacol". I got this after a week and 2 days of fighting between the pharmacy, the doctors office and the prescription drug plan company. And That's just one fight.
In the midst of fighting to get the medication, I was to have a stool culture done to check and see if I have any kind of infection in my stool because where I contracted Cdiff 2 months ago. Well we had to fight 3 days to get the fax sent to the hospital lab we use. Because the dr.'s secretary was sending it to the wrong lab.
Then today I wake up and I am coughing up infection out of my chest. So now I've caught the beginning of an upper respiratory infection/chest cold. So I'm in bed all day today running a fever, aching all over, taking mucinex D to try and cough the infection out of my chest before I get too bad. I'm thinking about calling the doctor to make an appointment to get medication to get rid of this infection. Because my immune system is so shot and I'm malnourished from not being able to eat good nutritious foods because of the Crohn's Disease and I don't see any other way I'm going to get rid of it.
This evening around 3:00p.m. everything came crashing down on me and my husband.Less than 24 hours after turning in my Stool Sample for Testing, the Gastro Dr.'s office called. I knew something wasn't right because the person who called was actually another Dr. that works in the same office as my Dr. when normally it is the Dr.'s assistant who makes these calls.
The Dr. tells me "Mrs. Caverley, your stool culture came back and I have bad news. You have Cdiff again. We are calling you in another round of antibiotics but this time instead of being on them for 1 week you will be on them for 2 weeks and taking these pills 4 times a day."
That's when i started to cry on the phone and apologized to the Dr. for crying but told him that why I'm crying is because i woke up this morning with what seems to be an upper respiratory infection, and now I'm being told I also have Cdiff and I'm still fighting to get my Crohn's Disease into remission on top of it all.
He felt so bad for me and tried to console me on the phone. But honestly there really isn't anything anyone can do. Crohn's is also an auto immune deficiency disease and so I am more susceptible to getting all kinds of infections as well as any kind of communicable diseases like the flu, colds, STAPH, MRSA etc.
We have been told to look into buying surgical masks for me to wear when I have to go out in public to the stores, hospitals, dr. offices etc. because if I don't I might keep getting sick constantly. And that makes me feel really bad because I know if people see me wearing one of those masks they're going to think I'm capable of giving them something which in reality is the opposite. I'm trying to keep "them" from giving me whatever they have. Just one more thing to make me feel like a FREAK!
To try and put what I'm going through into words is so hard because honestly you can't grasp the enormity of the situation unless you are sitting here with me hearing me say it to you. As someone told me once a few weeks ago when they called. They said, "When I read your posts and blogs I didn't grasp the severity of your situation until I heard you tell it over the phone.
I guess it's just one of those things you have to experience it to understand it.
So no happy, inspiring things to share today because I'm truly broken and my faith is actually wavering. I keep asking God WHY!!!!!! Why do you keep allowing me to suffer more and more when so many are lifting me up in prayer to either be healed or have my suffering decreased so that it is more bearable. I myself have reverted to one line prayers like "God help me to get through this day." "God ease the pain so I can eat and not be malnourished." Those kinds of prayers I've given up on the prayer of healing because I prayed that prayer for 4 years and there has been no healing. So I have accepted that God is not going to heal me and for some reason wants me to go through this. I don't know anymore.............
Sunday, November 13, 2011
Trying To Make A Difference In The World While Fighting Crohn's
It has been over 2 weeks since I last shared anything, and with it being 6:51 a.m. and I've been up all night in severe pain again from the Crohn's I thought I would write.
This coming Thursday was to be the end of me taking the Steroid to help put my Crohn's disease into remission. Sadly I will Not be going off the steroid because I am still very sick with the Crohn's and it hasn't gone into remission.
I talked to my Gastro Dr. last Monday and they scheduled more blood work to be done, to check my levels and see how bad the inflammation and infection still is and how high of a dosage of the Steroids I should be on. I went to have the blood work done on Wednesday, then Nov. 23rd the day before Thanksgiving I have to go back up to Columbus for an appointment with my Gastro dr. about the results from the blood work and possibly see what other medications he wants to try to get my Crohn's into remission.
Sadly though if I continue to get infections like the urinery trac infections I've been fighting along with the reoccurring outbreaks of the sores and have to keep being put on antibiotics I will not get my Crohn's into remission. Because every time I have to be on antibiotics it flares up my Crohn's worse.
As soon as we can get some of my current medical bills paid off, I'm going to be referred to a dermatologist about my reoccurring outbreaks with the sores and see if there is a different option out there to treat them other than keep putting me on antibiotics. Like perhaps a topical medication of some kind that would heal them.
Next Saturday Nov. 19th Jeremy and I are participating in the event "One Night Without A Home" that is happening in our town of Chillicothe Ohio to raise awareness about homelessness. Jeremy has been on committee over this event and we are even going to have a table for JMC Ministries! We will be handing out FREE brochures about our ministry, audio cd's of our interviews with 2 homeless shelters one right here in Chillicothe that just opened up a month ago called Daughter's of Ruth, and the other interview is with Jeremy Reynalds the founder of Joy Junction the largest family homeless shelter in all of New Mexico. We will have 15 copies of each interview to give away.
We will also have 20 FREE copies of JMC Ministries (Jeremy Caverley's) essay he wrote for is English Class in College about his experience being homeless for 2 years in Texas due to domestic violence at home and the death of his mother.
Along with all this we will have brochures about JMC Ministries and what we are doing to "fullfill the great commission" And lastly we will be raffling off 18 books written by Jeremy Reynalds of Joy Junction about homelessness. All the proceeds of the raffle will go to the homeless shelters that will be present at the "One Night Without A Home" event.
This event is a great opportunity for Jeremy and I to help raise awareness about homelessness and to not just share JMC Ministries experience with homelessness but others as well and how we all can make a difference even if we have a debilitating, incurable disease like Crohn's.
Because this week I went to Daughter's of Ruth homeless shelter here in chillicothe and a Women's domestic abuse/homeless shelter in Circleville along with my Friend Dawn and we gave away all together 10 fleece baby blankets Dawn had made, and over 20 sets of hats and scarves that I had made. for our Smitten Mitten Expedition as we call it to help keep homeless warm for the winter. This was the 2nd year Dawn and I had done this and we had twice as many items this year compared to last year.
I am praying desperately that God will grant me a good day next Saturday on the 19th to be able to go to this "One Night Without A Home" event so i can share my story and also try and get more people to get involved with the "Smitten Mitten Expedition" and either help make items or buy items like mittens or gloves. Or to want to donate yarn and fleece so Dawn and I can continue to make more items for the homeless. Because every hat and scarf I have made over 2 years has been made with yarn that was 100% donated! I have not had to buy one roll of yarn thanks to generous donations from people in my community.
So as you can tell it is my greatest desire to be well even if it only for that day so I can go to this event. Even if I have to trade being well for he Holidays to go to this event I pray God grants me this pray and desire because I want the world to see how God can still use a person who is home bound and bed bound most of the time and suffering with an incurable disease, to still make a difference in the world we live.
This coming Thursday was to be the end of me taking the Steroid to help put my Crohn's disease into remission. Sadly I will Not be going off the steroid because I am still very sick with the Crohn's and it hasn't gone into remission.
I talked to my Gastro Dr. last Monday and they scheduled more blood work to be done, to check my levels and see how bad the inflammation and infection still is and how high of a dosage of the Steroids I should be on. I went to have the blood work done on Wednesday, then Nov. 23rd the day before Thanksgiving I have to go back up to Columbus for an appointment with my Gastro dr. about the results from the blood work and possibly see what other medications he wants to try to get my Crohn's into remission.
Sadly though if I continue to get infections like the urinery trac infections I've been fighting along with the reoccurring outbreaks of the sores and have to keep being put on antibiotics I will not get my Crohn's into remission. Because every time I have to be on antibiotics it flares up my Crohn's worse.
As soon as we can get some of my current medical bills paid off, I'm going to be referred to a dermatologist about my reoccurring outbreaks with the sores and see if there is a different option out there to treat them other than keep putting me on antibiotics. Like perhaps a topical medication of some kind that would heal them.
Next Saturday Nov. 19th Jeremy and I are participating in the event "One Night Without A Home" that is happening in our town of Chillicothe Ohio to raise awareness about homelessness. Jeremy has been on committee over this event and we are even going to have a table for JMC Ministries! We will be handing out FREE brochures about our ministry, audio cd's of our interviews with 2 homeless shelters one right here in Chillicothe that just opened up a month ago called Daughter's of Ruth, and the other interview is with Jeremy Reynalds the founder of Joy Junction the largest family homeless shelter in all of New Mexico. We will have 15 copies of each interview to give away.
We will also have 20 FREE copies of JMC Ministries (Jeremy Caverley's) essay he wrote for is English Class in College about his experience being homeless for 2 years in Texas due to domestic violence at home and the death of his mother.
Along with all this we will have brochures about JMC Ministries and what we are doing to "fullfill the great commission" And lastly we will be raffling off 18 books written by Jeremy Reynalds of Joy Junction about homelessness. All the proceeds of the raffle will go to the homeless shelters that will be present at the "One Night Without A Home" event.
This event is a great opportunity for Jeremy and I to help raise awareness about homelessness and to not just share JMC Ministries experience with homelessness but others as well and how we all can make a difference even if we have a debilitating, incurable disease like Crohn's.
Because this week I went to Daughter's of Ruth homeless shelter here in chillicothe and a Women's domestic abuse/homeless shelter in Circleville along with my Friend Dawn and we gave away all together 10 fleece baby blankets Dawn had made, and over 20 sets of hats and scarves that I had made. for our Smitten Mitten Expedition as we call it to help keep homeless warm for the winter. This was the 2nd year Dawn and I had done this and we had twice as many items this year compared to last year.
I am praying desperately that God will grant me a good day next Saturday on the 19th to be able to go to this "One Night Without A Home" event so i can share my story and also try and get more people to get involved with the "Smitten Mitten Expedition" and either help make items or buy items like mittens or gloves. Or to want to donate yarn and fleece so Dawn and I can continue to make more items for the homeless. Because every hat and scarf I have made over 2 years has been made with yarn that was 100% donated! I have not had to buy one roll of yarn thanks to generous donations from people in my community.
So as you can tell it is my greatest desire to be well even if it only for that day so I can go to this event. Even if I have to trade being well for he Holidays to go to this event I pray God grants me this pray and desire because I want the world to see how God can still use a person who is home bound and bed bound most of the time and suffering with an incurable disease, to still make a difference in the world we live.
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