what child is this/greensleeves performed by miranda caverley

My rendition of What Child Is This/Greensleeves
Download song for FREE at
https://www.reverbnation.com/jmcministries/song/27062763-what-child-is-thisgreensleeves

JMC Vlog Episode 51: Some things are just too hard to talk about

Update on fight against Crohns disease. Going to a new GI doctor and all I have gone through since my last vlog 7 months ago.

Song From A Secret Garden Performed By Miranda Caverley

My Version of Secret Garden's Song "Song From A Secret Garden"
I dedicate This song to my sister Autumn

Surviving My 2nd Anaphalixis Reaction To Crohn's Meds In 6 Months

The last time i made a post/video I was getting ready to start on Entyvio, because I had had a horrible reaction to Remicade.  Well, after having my 4th Entyvio infusion on July 16, 2016 I started having a SEVERE allergic reaction to it.  My whole body started swelling up with fluid, and i was in excruciating pain through out my whole body.

I had to be put on an even higher doses of lasix medications than I was on before while going through the reaction to Remicade.  I have severe vertigo and have horrible dizzy spells. It's been just over a month since I had the reaction and my reactions symptoms sadly are not really any better.  The only symptom that is, is the crushing pain feeling through out my whole body, that has gotten a lot better.  The doctors say I literally have to wait for the medication to get out of my system before I will see any improvements in my symptoms.  Sadly this can take months,  so for now I sit in my house next to my bathroom going to the bathroom about 10 times a day peeing the fluid off my body and also going another 10 times a day because of the Crohn's disease causing diarrhea. 

My GI doctor ran blood work and it shows that the Crohn's disease is NOT in remission even though they tried to keep telling me it was after my ct scan results from June came back inconclusive.  But I knew better and I know my body.  But sadly I am literally at the end of medications the doctor can try to stop this disease from continuing to eat me alive, and surgery looks to be in my future sooner than later.

In the face of all this, my mental health has taken a HUGE hit and I am just not the Miranda everyone knows right now.  But every morning I get up and keep trying and keep fighting. 

I've even kept up my music, I just recorded a new song I have been working on for months called "Song From A Secret Garden" it is written by the group Secret Garden

It is a beautiful contemporary classical piece and i love playing it, it is so soothing to me.
If you would like to listen to the song and download it for free click on the link below
https://www.reverbnation.com/jmcministries/song/26499036-song-from-secret-garden-cover

With everything going on with me, it has really taken a toll on my husband.  I mean I came close to death 2 times in 6 months due to reactions to the meds.  I have not been able to go anywhere outside of the house other than to go to doctors appointments in a year!!! A year!!! I have lost an entire YEAR OF MY LIFE!!!!

My husband was laid off from his job 2 months ago because the the contract ended, and he is currently on unemployment looking for work and trying to take care of me all at the same time.  the stress is so bad, it has caused my husband to get high blood pressure and he has had to be put on blood pressure medication. His doctor and nurses do believe that his problem is situational and more than likely will be fixed when the stress go down.  My husband is healthy and now my disease is causing him to have health problems.  The guilt is sometimes unbearable, and I feel at times I am ruining the lives of everyone around me.  But in reality it is the disease and I don't have control over what happens to me when it comes to Crohn's.

We are in survival mode, and most anything that has nothing to do with out surviving this season in our lives we just do NOT care about.  I have literally said "the world could be burning and I would light a match and throw it on to the fire" I hate being like this but if I don't think this way I'm mentally going to lose it more than I already have. 

That's all I can bring myself to write for now.  I hope to write again soon or do a video log. 

JMC Blog Episode 50 Entyvio Infusions and Crohns disease

Started entyvio infusions yesterday to try and get this crohns disease under control. This is my 9th med change in 4 years

JMC vlog episode 49: Walking the darkest valley of my life so far

What has been happening in my fught against crohns disease since November 2015 to the present day. Anaphylaxis reaction to remicade, and GI doc wants to start me on Entyvio

River Flows In You Performed By Miranda Caverley

I recorded my version of Yiruma's "River Flows In You" for my husband Jeremy as a gift for valentines day. Hope it blesses you.

Random Rambling thoughts for feb. 4th

I have really become a hermit compared to my usual self.  Talking through fb chat or text is all I want to do. Some may understand some may not but thankfully my family does.

I don't want to talk to or see anyone because I feel so terrible. My mind is just so jumbled with gobbly gook that I can't carry on a in person conversation even Jeremy doesn't talk to me much other than to come in and see if I'm OK and if I need anything every so often. In a text message or private chat I have time to get my thoughts together and then respond.

I have 29 days until I go back to see my crohns disease specialist and see where we go next in this fight.

I actually had a anxiety attack last night because I was so worried about all my close friends I usually call weekly or monthly frightened they may think I'm deliberately avoiding them or that I just don't care about them anymore because this person I am right now just isn't me, it is truly the disease taking over at times and the real me is getting pushed to the back of the line.

These are just some of the things that go through my head on a daily basis since my health has been in rapid decline since the remicade reaction almost a month ago. I question if I'm even a good wife and try to do the best I can even though I'm feeling so bad.

This is really just a venting post where I needed to get this off my mind. Welcome to the thoughts of a chronically ill person.

Miracles, Allergic Reactions and Crohns Disease

Since my last post some very scary things have happened in my fight against crohns.

After my remicade infusion in December I had continued to go down hill with the crohns and new symptoms suddenly started popping up on my body.

I was suppose to go back n see my GI doctor on Jan. 5th but I was so sick and literally stuck in the bathroom that I could not make the hour and thirty minute one way drive to Columbus so I rescheduled for march 1st.

I went in for my 3rd remicade infusion on Jan. 9th and right st the end of the infusion my body started swelling up with fluid at an alarming rate. We got me home and I immediately took my water pills and other emergency meds to help with the reaction. However the reaction symptoms continued to get worse and more symptoms started showing up over the next few days so bad that I immediately went and saw my primary care physician who told me that I was having a severe allergic reaction to remicade and that if I had not been prescribed these emergency meds that I have at home that I would have been in the hospital. He upped the dosage of my water pill to combat the never ending adema throughout my body and told my to take another emergency med daily instead of 2 or 3 times a week because this reaction is going to take 3-6 weeks to get over because the remicade stays in the body for so long. 

He also told me that I can never take remicade again because if I did I could die because this reaction was so severe.

So since Jan. 9th I have gone through literal hell suffering from the crohns and the allergic reaction so much so I am isolating myself and literally cont want to be around anyone and that is not me for those who are close to me.

My days consist of just surviving and praying the pain eases enough so I can at least get out of bed and make myself dinner and bathe myself. I pass the time crocheting, coloring/drawing and watching old TV shows n movies.

I have no independence right now my husband has to do most of the house work and all the shopping and Also all the driving because I'm just not able to right now.

We all realize it was a miracle the allergic reaction was not worse because if I would of had one more symptom I was going to be in the hospital fighting for my life in full on anaphylaxis shock. Because I had every symptom of it except the swelling of my throat where I couldn't breathe. God is not done with me and still has work for me to do in the future. There is still someone out there I have not shared the love of Jesus with and all he has done for me.

Every day I write on Facebook accomplishments and no matter how small or insignificant they may seem to a healthy young adult to a chronically I'll young adult they are mountains I have climbed that day and I just keep swimming as dory in finding memo says.