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.

Remicade, Crohn's, and Christmas

On Dec. 5th 2015 I had my first Remicade infusion.  Thus beginning my long journey into the life of remicade infusions and hospital visits every 4 to 8 weeks for the rest of my life or until the remicade stops working.  And it also is the beginning of my journey into insurmountable medical debt due to the remicade infusions costing me over 1,100.00 every time i have an infusion and I can't get any help from the remicade discount plan because I am a medicare patient and I also can't get any help through a medical grant because my husband and I make too much money. So the only option we are looking at is to apply for medical bankruptcy in the next couple of years.  Because the remicade alone not including all my other thousands of dollars in medical debt will be in just one year over 13,000 dollars!!! We are too rich to be poor but we are too poor to be rich.  We are the middle class in America.

Jeremy and I in our Very First Remicade Selfie and Me in my purple (Crohn's Awareness) Santa Hat

 The Crohn's Disease continues to ravage my body and the first infusion has not shown any signs of relieving my pain and suffering.  I am in continuous pain in my intestines, stomach and now joints and bones due to the recent Crohn's induced arthritis that has decided to ravage my body as well.  Many days I fight just to walk across the hall to the bathroom and literally have to will myself and tell myself to get up and do a little bit of house work ever day so I don't get behind on it and the chores start piling up.  

In the face of all this, I have chosen to enjoy the Christmas holiday and make the best of it. Jeremy and I have baked lots of cookies and handed them out to our neighbors, and family.  mailed out and handed out lots of Christmas cards, and when I am too sick to do anything I have started working on 2016's Smitten Mitten expedition's items with the yarn that has been donated. 

The Caverley 2015 Christmas Tree

I go back to see my GI doctor on Jan. 5th and I'm not sure how that is going to go, and then I am suppose to also have my next Remicade infusion that week also.  Just taking deep breaths and reminding myself to breathe and let it all go because I have no control over all this.  Only God does and He is better at this stuff than i am. 

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