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.
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