After the post I made yesterday, I thought yesterday was the worst day I'd lived through so far with so much bad news coming in from numerous phone calls. But today started off even worse than the whole of yesterday.
At around 10:30 a.m. I received a phone call from my Gastro Doctor's nurse with the worst news imaginable. She tells me that the company Abbott that makes my Humira injections just contacted her and told her that they are refusing to give me assistance on the $656.09 co-pay medicare part D thinks I can afford to pay. The nurse believes the main reason isn't my income why I was denied help, but the fact that I have insurance already and they won't help people who have insurance even if their co-pays are hundreds of dollars. The Co-pay for my Humira Injections are More than the rent I pay for my home!
So the nurse was literally freaking out with me on the phone, she normally has all the answers but she was seriously telling me that she didn't know what we were going to do if we couldn't find help. Because It's Humira or Remicade to help me fight this disease and that is the end of the line on medications and then they start cutting out my intestines. And if you can't afford the meds to help you then what do you do?
The nurse gave me one last number to try, but when I contacted my pharmacy to get the exact amount I would be paying out of pocket they gave me a number to try. Well to make a long story short, that number couldn't help me but sent me back to The Health Well Foundation that I had gotten my previous help for my Humira injections for because they heard that they had gotten new funding in for Crohn's patients, and THEY DID!!!
After 8 phone calls and being on the phone for 4 straight hours (and me sobbing, and praying for God To help me in the background) My husband Jeremy finally got through to the Health Well Foundation and we have been pre approved for a Grant of $2,500.00 for the 2013 year. Because my information is already in the system from my previous Grant with them they believe they can get me help in time for my next Humira Injection in 2 weeks!
The Down Side to this, is that the Grant will NOT cover my Humira injections for the entire year and I will run out of Grant money around July, and then we have no clue how we will get help to cover the $656.09
So now we are playing the waiting Game, Waiting for the papers to get here from the Health Well Foundation so I can fill them out, then mail them back and wait for the news that i can go get my medicine.
In the midst of all this chaos I was still having to run to the bathroom, and fight off nausea and vomiting along with severe chest pains. Which most of all this was more than likely caused by the stress I'm under not to mention the diseases.
I have cried, vomited and had diarrhea so much over the past 24 hours I became dehydrated and had to drink lots of liquids to try and get me re-hydrated. I literally could not drink enough water to satisfy my thirst it was that bad.
How many times a day do I cry out to God for help? So many I can't count, I cry out for him to stop the chaos, to stop the pain and heal my broken body and mind. And at last I got a break for a while with the help through this Grant, but after such a long fight of nearly 2 months trying to get help I'm too broken and weak to celebrate this victory. So if you are reading this celebrate for me, because in my life victories are few and far between and rarely last. But when they come I am so grateful for the peace that comes even if it only lasts a short time.
This day is only 4 hours away from being done, and I am close to having survived another day. And then waiting to see if I will survive the next.
Thursday, January 24, 2013
Wednesday, January 23, 2013
"Beautiful, Beautiful" The Song That Got Me Through Today
While Listening to this song today after so many bad things happened between phone calls to Doctors and The State Of Ohio about my disability and dealing with the Crohn's Disease, Gastroparesis and Post Traumatic Stress Disorder. I felt God wrap his loving arms around me and comfort me while this song played and I just cried. Cried because I was in pain, cried because I was broke and cried because I didn't feel Beautiful because my hair is falling out and I had to cut it off very short.
But in the midst of everything a peace that surpasses all understanding came to me for a short time and allowed me to just breathe and find that peace.
It's Days Like This I Wish God Would Take Me Home To Heaven
Too much bad stuff happened today.
First, I woke up again at 5 a.m. nausea's and throwing up, diarrhea, and stomach pains.
Second, I call the Abbott Company who makes my Humira Injections to see why they haven't contacted me on whether or not they will give me help paying for my injections so I can continue to take Humira and they say I need to call back on Tuesday to see if they are finished reviewing my files. The Bad thing about this is, tomorrow I take my final injection then I have no more and no way to afford any more injections unless Abbott gets off their bums and makes a decision. So I was then told by Abbott to contact my Gastro Doctor and inform them that I will be out of injections tomorrow.
Three, I call my Gastro Doctors nurse and talk to her about the Humira injection problem, as well as about my hair falling out, my non stop nausea and never ending diarrhea and intestinal pain despite being on Humira for 4 months. So the nurse takes down everything going on with me, and then calls me back after she talks to my doctor. My doctor is ordering lots of blood work to be done on me to check my levels again to see if I'm lacking and that is the reason why my hair is falling out, and he is also checking me for Lupus. and I swear if it comes back positive for Lupus I'm begging Jesus to take me home to heaven NOW! I don't need another disease
And Four, I get a phone call from the State of Ohio because they are evaluating me on whether I am still disabled and should continue to receive SSDI. Their problem is that I haven't seen a psychiatrist in over a year for my Post Traumatic Stress Disorder and Depression, and they want me to have an appointment with a psychiatrist that they choose to reevaluate me and this psychiatrist will decide whether I am still "disabled" or not.
For those who don't know about my struggle with PTSD I have had this since I was 17 yrs old when first a young man who went to the church I was attending began stalking me and even threatened to bring a gun to church and shoot me in front of everyone as I was playing my drums for a service because I refused to date him. I ended up having my first nervous break down then, and I had to have a restraining order placed against this man which didn't work and he ended up finding me a year later and want to see me. But after that visit and making it known I didn't want to see him he finally left me alone.
Then at 18 yrs old I married a man who I thought loved me, but ended up being a drug addict and alcoholic who beat and raped me off and on for 6 months and held me against my will. Told me if I tried to leave him he would kill me. And only through the grace of God did I get away from that Man with my life, but not my mind.
And after I got away from my ex husband that was when the PTSD symptoms started until finally 4 years ago I had my 2nd nervous break down and finally put a name to what I was dealing with. While finding out I had PTSD I was also dealing with Crohn's Disease and Gastroparesis, which we did NOT know I had at the time and which led to my mental problems and depression even more.
The reason I haven't been seen by any counselor or psychiatrist is because the place I was going to had me on an assistance program for payment, and guess what, they ran out of funds. I received a letter telling me I was NOT allowed to return to the mental health facility for treatment because there were no more funds to help me. So I had no where to go and being so sick with Crohn's and Gastroparesis I wasn't even able to go to an appointment if I tried.
So now this psychiatrist will hold my life in his or her hands and whether I will continue to get help and stay labeled disabled or be told I'm well enough to hold down a job and go back to a normal life just like everyone else. And this scares me to death that someone has this much control over my life. Because the last time someone did have this control they abused me for a year and nearly murdered me. So you can understand my anxiety and fear.
Even though the abuse happened over 10 years ago, in my head it's as if it happened just yesterday especially when I am triggered in to a flashback or have a night terror while sleeping. Like I said my body may have escaped the abuse but my mind didn't and I can only pray that one day I will be healed from this as well.
Reliving beatings and rapes for the rest of your life is not what anyone wants, and to have to fight Crohn's Disease and Gastroparesis on top of it is too much to bare at times.
It's days like this I don't even know how I'm still alive and haven't had a heart attack or stroke from all the stress. I don't wish anything I go through on my worst enemy. I am really broken tonight and just asking God to help me through this day, because I don't know how i'm gonna make it through.
First, I woke up again at 5 a.m. nausea's and throwing up, diarrhea, and stomach pains.
Second, I call the Abbott Company who makes my Humira Injections to see why they haven't contacted me on whether or not they will give me help paying for my injections so I can continue to take Humira and they say I need to call back on Tuesday to see if they are finished reviewing my files. The Bad thing about this is, tomorrow I take my final injection then I have no more and no way to afford any more injections unless Abbott gets off their bums and makes a decision. So I was then told by Abbott to contact my Gastro Doctor and inform them that I will be out of injections tomorrow.
Three, I call my Gastro Doctors nurse and talk to her about the Humira injection problem, as well as about my hair falling out, my non stop nausea and never ending diarrhea and intestinal pain despite being on Humira for 4 months. So the nurse takes down everything going on with me, and then calls me back after she talks to my doctor. My doctor is ordering lots of blood work to be done on me to check my levels again to see if I'm lacking and that is the reason why my hair is falling out, and he is also checking me for Lupus. and I swear if it comes back positive for Lupus I'm begging Jesus to take me home to heaven NOW! I don't need another disease
And Four, I get a phone call from the State of Ohio because they are evaluating me on whether I am still disabled and should continue to receive SSDI. Their problem is that I haven't seen a psychiatrist in over a year for my Post Traumatic Stress Disorder and Depression, and they want me to have an appointment with a psychiatrist that they choose to reevaluate me and this psychiatrist will decide whether I am still "disabled" or not.
For those who don't know about my struggle with PTSD I have had this since I was 17 yrs old when first a young man who went to the church I was attending began stalking me and even threatened to bring a gun to church and shoot me in front of everyone as I was playing my drums for a service because I refused to date him. I ended up having my first nervous break down then, and I had to have a restraining order placed against this man which didn't work and he ended up finding me a year later and want to see me. But after that visit and making it known I didn't want to see him he finally left me alone.
Then at 18 yrs old I married a man who I thought loved me, but ended up being a drug addict and alcoholic who beat and raped me off and on for 6 months and held me against my will. Told me if I tried to leave him he would kill me. And only through the grace of God did I get away from that Man with my life, but not my mind.
And after I got away from my ex husband that was when the PTSD symptoms started until finally 4 years ago I had my 2nd nervous break down and finally put a name to what I was dealing with. While finding out I had PTSD I was also dealing with Crohn's Disease and Gastroparesis, which we did NOT know I had at the time and which led to my mental problems and depression even more.
The reason I haven't been seen by any counselor or psychiatrist is because the place I was going to had me on an assistance program for payment, and guess what, they ran out of funds. I received a letter telling me I was NOT allowed to return to the mental health facility for treatment because there were no more funds to help me. So I had no where to go and being so sick with Crohn's and Gastroparesis I wasn't even able to go to an appointment if I tried.
So now this psychiatrist will hold my life in his or her hands and whether I will continue to get help and stay labeled disabled or be told I'm well enough to hold down a job and go back to a normal life just like everyone else. And this scares me to death that someone has this much control over my life. Because the last time someone did have this control they abused me for a year and nearly murdered me. So you can understand my anxiety and fear.
Even though the abuse happened over 10 years ago, in my head it's as if it happened just yesterday especially when I am triggered in to a flashback or have a night terror while sleeping. Like I said my body may have escaped the abuse but my mind didn't and I can only pray that one day I will be healed from this as well.
Reliving beatings and rapes for the rest of your life is not what anyone wants, and to have to fight Crohn's Disease and Gastroparesis on top of it is too much to bare at times.
It's days like this I don't even know how I'm still alive and haven't had a heart attack or stroke from all the stress. I don't wish anything I go through on my worst enemy. I am really broken tonight and just asking God to help me through this day, because I don't know how i'm gonna make it through.
Friday, January 18, 2013
A Visual of My fight With Crohn's Disease
The Song "Death Of Me" By The Christian Rock Band "Red" I feel is a lyrical vision and so is the video of what my fight with Crohn's looks like. If you want to understand my fight then watch this video
Crohn's, It Takes Everything From You And Yet It Demands More
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| My New Hair Cut Thanks To Crohn's Disease |
This is the shortest my hair has been since I was in kindergarten! I didn't cry at the beauty salon until after my hair was cut and i was walking to the car for Jeremy to take me home. My hair was to be completely honest, was the only thing I ever liked about myself and now that is gone too.
No matter if it grows out I'll have to cut it again once it starts to reach my shoulders because that is the length when my hair starts to really fall out. It's as if when my hair start to have some weight to it, it just breaks off in handfuls.
I can't tell you how many balls of hair I've found on the carpet and every time I find one it's scary because you aren't expecting to pick up your hair. Because the balls look like dirt or that someone has spilled something on the carpet but no it's my hair.
To try and help stop this from continuing to happen, Jeremy is going to go get me some Prenatal Vitamins and see if that helps. But for now I'll just have to stick to cutting my hair off every few months.
When I said Crohn's Takes Everything and demands more, here are a few things it has taken away. But then I will share what it hasn't in a hope to still stay positive despite all the negative
Things I can't do
intimacy with my husband
going out in public
going to church
play the drums
Going for long hikes in the woods
Bike Riding
Playing Softball
having people wanting to come visit you (before i was sick i had people come to visit and i would go visit them, but not so much now)
enjoying a meal
getting enough nutrients to feel healthy
waking up in the morning feeling refreshed and awake
getting to places without having to pack a big back pack full of meds, food, water, vomit bags, tissues, hand sanitizer and doctor masks (incase I go into a place where people are coughing alot and are sick then i will have to wear a mask)
Going on Vacation with my husband or loved ones
Going for a drive out in the country
(I could keep going on but i won't, you get the picture)
Things I still can do
Read/Read my bible
spend time with my spouse and enjoy his company
write
crochet
draw
watch movies
take short walks around the house for exercise
play video games with my husband
help my husband do some of the house chores
listen to music
play piano
sing
help my husband with ministry work, when i can
Take bubble baths
If you are wondering has Crohn's effected my mind? Yes it has, it is so easy to be depressed any normal person would be. and I am. But I still continue to fight I get up every day and put on clean clothes brush my hair brush my teeth and clean my self up take my medications and try to make the best of things
I will share this story with you before I end just how quickly I can get sick and not know it is going to happen .
Last night while trying to take a bath, I suddenly got violently sick to my stomach and had not the trash can been sitting next to me I would have thrown up in the bath tub and all over myself. Jeremy had to come running up the stairs when he heard me. Had to help me get out of the tub, dry me off, get me my anti vomiting medicine get me dressed and help me to bed.
Jeremy had been working on homework for college when I suddenly got sick and because of this episode with me and him having to take care of me, he was late turning in a paper for school and was up most of the night watching over me because I was so sick.
This disease doesn't just effect me it effects Jeremy too and at times like last night he broke down and was very upset. To take care of a Crohn's patient you have to have a great deal of love for that person because you deal with some awfully disgusting things at times and it's quite embarrassing to have to have your husband or family members take care of you and see you in this kind of state
Cleaning up vomit, diarrhea and applying creams and ointments to the body parts I can't reach because the disease has created horrible sores on them and the only time you get to go anywhere with your spouse for the day is to take them to doctors appointments, hearing me cry out all day and all night in pain at times with no way to re-leave it, is not what someone signs up for when they get married.
But because Jeremy loves me so much he does these things for me and I don't know what I would do without his help to make it through.
So now you know the dirty truth behind this disease let us fight to find a cure because without God's healing touch all who fight this disease will suffer with it until God decides we have had enough and calls us home.
Wednesday, January 16, 2013
Needing To Get a few things off my chest
I get so tired of dealing with this disease. The Pain, the constant diarrhea/bathroom breaks, and of course the not being able to go anywhere because there is a Flu epidemic going on and if I catch the Flu I more than likely will be in the hospital because the Humira medication deteriorates my immune system so I can't fight off any illnesses.
I have been on Humira since September 2012 and I'm still in severe pain. Like last night after eating a new recipe I tried out I have been up sick all night and all day in severe pain because I ate some boiled veggies, grilled chicken and all put into a pot of cream of chicken soup to make like a chicken pot pie and you eat it with biscuits I have been none stop sick. If I'm not just eating potatoes for my only source of veggies, then I am even more sick it seems, and more times than not it doesn't matter what I put in my stomach it all makes me sick.
I'm so tired of waking up 2-3 times during the night with severe stomach/abdominal pains to the point I'm vomiting or dry heaving every morning and even popping nausea pills I still sometimes throw up. Every morning like clock work between the hours of 6-8a.m. I'm up dry heaving or vomiting and keeping Jeremy awake and having to take care of me. Getting me medicine, and crackers or the bucket to catch my vomit.
I keep reading my bible and trusting in God that he sees my suffering and won't allow me to suffer for nothing, but at times especially since we have been experiencing so many deaths lately I wonder why God keeps me alive even though he sees that I'm suffering to the point I cry for death to ease the pain from the Crohn's. And no amount of pain meds even dull the pain that seems to spread over my entire body at times and is unbearable.
So many people have these ideas that they have this miracle drug or miracle "something" that will cure me. I get so tired of these people and I'm just going to be honest. Because I have tried so many "Miracle" Drugs that NEVER work and we have spent hundreds of dollars on these "Miracle" Drugs and I will Not try any more.
We have tried diets, meds, "miracle" drugs and prayer and nothing is easing my pain. The only thing I don't give up on is prayer because it is all I have left. For God is the only one that can heal me.
It seems the doctors really don't know what to do and are pulling at strings. They say Oh you aren't bad enough to hurt to the extent you are. Yet they say I have active crohn's in my small intestine and I also have ulcers throughout my intestines, but I'm not suppose to be in pain. YOU TRY TAKING A POOP ON A ULCER! Is what I want to say to them and have them tell me if doesn't hurt like Hell?
I go back to the doctor Next month for my 3 month check up and to see how I've improved, but yet I have not improved.
On top of all this I'm fighting to get help to afford my Humira injections, for without any help I will have to pay over 400 dollars every 3 months to stay on this medicine and I don't have that money. I've applied for help but am still waiting to see if I will qualify and if I don't then I don't know what will happen to me.
And while trying to get his Bachelor Degree Jeremy is continuing to take care of me and do all the shopping, helping with house work and taking care of me when I am too sick to take care of myself. It is too much at times for 1 person to handle but he continues to do an amazing job at juggling college, ministry work and me.
So today has been a really bad day, and I needed to get this off my chest and vent. Sorry if this may have been to honest for some but this is what a person with Crohn's deals with every day of their life.
I have been on Humira since September 2012 and I'm still in severe pain. Like last night after eating a new recipe I tried out I have been up sick all night and all day in severe pain because I ate some boiled veggies, grilled chicken and all put into a pot of cream of chicken soup to make like a chicken pot pie and you eat it with biscuits I have been none stop sick. If I'm not just eating potatoes for my only source of veggies, then I am even more sick it seems, and more times than not it doesn't matter what I put in my stomach it all makes me sick.
I'm so tired of waking up 2-3 times during the night with severe stomach/abdominal pains to the point I'm vomiting or dry heaving every morning and even popping nausea pills I still sometimes throw up. Every morning like clock work between the hours of 6-8a.m. I'm up dry heaving or vomiting and keeping Jeremy awake and having to take care of me. Getting me medicine, and crackers or the bucket to catch my vomit.
I keep reading my bible and trusting in God that he sees my suffering and won't allow me to suffer for nothing, but at times especially since we have been experiencing so many deaths lately I wonder why God keeps me alive even though he sees that I'm suffering to the point I cry for death to ease the pain from the Crohn's. And no amount of pain meds even dull the pain that seems to spread over my entire body at times and is unbearable.
So many people have these ideas that they have this miracle drug or miracle "something" that will cure me. I get so tired of these people and I'm just going to be honest. Because I have tried so many "Miracle" Drugs that NEVER work and we have spent hundreds of dollars on these "Miracle" Drugs and I will Not try any more.
We have tried diets, meds, "miracle" drugs and prayer and nothing is easing my pain. The only thing I don't give up on is prayer because it is all I have left. For God is the only one that can heal me.
It seems the doctors really don't know what to do and are pulling at strings. They say Oh you aren't bad enough to hurt to the extent you are. Yet they say I have active crohn's in my small intestine and I also have ulcers throughout my intestines, but I'm not suppose to be in pain. YOU TRY TAKING A POOP ON A ULCER! Is what I want to say to them and have them tell me if doesn't hurt like Hell?
I go back to the doctor Next month for my 3 month check up and to see how I've improved, but yet I have not improved.
On top of all this I'm fighting to get help to afford my Humira injections, for without any help I will have to pay over 400 dollars every 3 months to stay on this medicine and I don't have that money. I've applied for help but am still waiting to see if I will qualify and if I don't then I don't know what will happen to me.
And while trying to get his Bachelor Degree Jeremy is continuing to take care of me and do all the shopping, helping with house work and taking care of me when I am too sick to take care of myself. It is too much at times for 1 person to handle but he continues to do an amazing job at juggling college, ministry work and me.
So today has been a really bad day, and I needed to get this off my chest and vent. Sorry if this may have been to honest for some but this is what a person with Crohn's deals with every day of their life.
Wednesday, January 9, 2013
JMC VLog Episode 36: Smart Pills, Ministry, and More Car Wrecks
Jeremy and Miranda share:
Jeremy shares about being in another car wreck just 2 months after their first one.
Finishing Fall Semester in College
Being interviewed for local newspaper
https://www.facebook.com/photo.php?fbid=10151992112568912&set=pb.259240778911.-2207520000.1357789212&type=3&theater
Becoming a Blogger for the P.P. Simmons syndicated blog
http://www.ppsimmons.blogspot.com/
Miranda shares about her continued fight with crohn's disease.
starting on humira and it's side effects and going through what is called the "Smart Pill" Procedure.
And in all this having to miss the holidays with her family again for the 4th year in a row due to Crohn's.
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