Hello everyone!  I hope everything is going well your way.  In this post, I would like to give you an update from older posts as well as some new things that have popped up.

  This past week I found out from my last blood work that my iron count is still really low (28).  The normal range is 40-140. I’m not sure what is going to be done with this yet. During this time, I decided that I would try and decrease my Entecort steroids down to one capsule a day because I was feeling better and I don’t like to be on these any longer than I have to.  Steroids have many side effects and the longer you are on them, the more damage they can do.  Boy, was that a mistake!  From the day I dropped down to one capsule a day, I started feeling really fatigued and sluggish.  A couple of days had passed then all of the sudden it hit one day really early in the morning.  Let’s put it this way, I had to muster enough energy and strength to take Bella to school and afterwards I went straight to the couch and didn’t move for the rest of the day (until I had to pick her up).  I somehow figured out what went wrong and quickly took the maximum amount of steroids I could take (3 capsules a day).  The next day I was feeling a little better and by the day after that, I was back to my old self.  So now I realize that one capsule was not enough and to not do that again for some time now.  I was doing good with 2 capsules so maybe after I get better with 3 again I will try to get back down to 2.  This is a prime example of taking this disease one day at a time – you never know from day to day what this disease will put you through.

A couple of days later, I was to take my daughter to a basketball homecoming 3 hours away near my hometown.  Everything was going well until we were getting ready to leave.  We were on the gym floor talking to people and I just turned around and seen nothing but a basketball coming right for me.  I didn’t even have time to put my hands up to protect myself and the basketball was aimed right at my catheter of all places. It got me good!  I was scared to look at the catheter because in my mind, it had fallen out.  I asked my aunt and uncle to look for me and everything was still intact.  It hurt, but I think it scared me more than anything.  I went to my aunt and uncle’s house and texted my home health nurse to tell her about my incident.  She told me when I got home to flush it with my saline wash and heparin to see if I had damaged it in any way.  I did and everything went through okay.

May 2016

The next day, I hooked myself up to my TPN nutrients and everything went through fine, however, the next night when I hooked myself up to a dehydration saline bag, nothing went through.  The infusion rate is suppose to be for 4 hours and I finally took it off at 6 hours and there was still a full bag.  The next day my home health nurse came to draw blood from my catheter and she couldn’t get any blood out of it.  She tried everything she could but nothing would come out for her.  She ended up drawing blood from my arm instead.  When she left, she told me she was going to call the doctor and suggest I get a new one put in because she thought I may have damaged it when the basketball hit me.  Also, my heart rate was back down to 63 bpm.  I guess I should call my doctor and see what the plan is.

In the mist of all this, my TMJ has come back this week and I finally made an appointment with an oral surgeon.  After examining me, he told me he wanted me to get an MRI done to see where the cartilage is in my joints, if any.  He told me that he believed I had a dislocated jaw joint and believed I had this since I had orthodontics in my teen years!  I have been walking around with this all that time and had no idea.  I did know something was not right, and it’s been like this for years but didn’t know it was dislocated!  Never a dull moment here!

Monday morning I will go to Barnes in St. Louis and get a new Hohn catheter put in.  They told me that they are only going to numb me up.  I am kinda nervous about this because when I first got this one, they gave me a twilight where I was awake but didn’t care and now they are just going to numb this one?!  Please say a little prayer for me during this time.  I am so glad that I did not accept that job offer from a month ago.  I’m falling apart again!  Remember to take this disease one day at a time because if you don’t, you will go crazy and it will get the best of you!  Do not give this disease the satisfaction!

Chow for now!