Miranda's Music


Listen To Miranda's and her husband Jeremy's Music and Download Many of the songs they have recorded over the years

Monday, July 14, 2014

Heartbreaking Is What It Is

I haven't made an update in over a week.  Because some very heartbreaking stuff has happened, and I'm glad it's over with. 

For 2 weeks now I have not been able to go play drums again at my church.  It seems I'm starting to go backwards instead of forwards in my health, and Crohn's is really kicking my butt again. 

I have begun to randomly hemorrhage from my rectum and passing blood and blood clots. All signs that I have a new Fissure (tear in my intestine/colon) and the fatigue, weakness and intestinal pains have been hitting me out of no where with ferocious vengence.  I was laid up all weekend. 

I attempted to go to a Family Reunion on Saturday and even took my drums because my dad wanted to play music with me, but just after eating what was my first meal of the day at the reunion, I became so sick I felt like I was going to pass out.  So Dad, and Jeremy quickly packed me up (drums and all) and got me home. I didn't even get to play my drums. 

Then this past Thursday, I got the scare of my life.  My friend Heidi who has battled Crohn's since she was a pre-teen and is now in her 20's nearly died.  Heidi has been on Remicade (Chemo) treatments for years and this is the only medication that helps her crohn's. But on Thursday while getting her infusion at the hospital, Heidi had a dangerous allergic reaction to the remicade and nearly died. As she posted in her facbook status after the doctors and nurses saved her life she says, "I was seconds away from dying". I have never met Heidi in person because she lives all the way down in Florida, but she is one of my best fb friends, crohn's friends, and also my sister in Christ. And I love her and her family so much.  And to know I nearly lost her due to this disease and the side effects of the meds, really hit me hard.  Because with Crohn's that's how fast things can change for the worst. One moment we are fine and the next we are fighting for our lives.

But Heidi is doing well now and is back home and even got to celebrate her son Zion's 4th Birthday over the weekend.

I myself will not be on any medication to fight my crohn's disease very soon, because the Entocort (steroids) medication I have been on for the past 6 weeks is not working again for the 2nd time.  So once I am off this I will be having it put in my medical record that this medication does not help me and to not prescribe it.  And because I'm coming off these steroids, my mood swings are out of control and I am even hallucinating at times, and still having my feet swell up with fluid, but that is getting better as I tapper off.  The side effects of these drugs they put us on to fight this disease are worse than the disease itself at times.  And so far in 2 1/2 years I've been put on 5 different meds to try and get me in remission and nothing has helped.  So in October when I go back to my GI doctor it's back to the drawing board on what to try next and if my insurance will even cover the medication they want to try next.

However, in the face of all this, I'm taking up crocheting again and making hats and scarves for the homeless in our area of Ohio.  I call it the Smitten Mitten Expedition, and this will be the 4th year I've done it.  Already I've received yarn donations and even money donations to buy yarn, and so far in 2 weeks I have made 2 sets for men and 3 sets for women.  And on the first week of November I take the items to local homeless shelters and give the items away.  So even if I can't go play drums right now and things are bad, I'm still fighting and continuing to do what I can for the Lord and to make a difference in the lives of people.

Here is the link to see the items I have made so far SMITTEN MITTEN EXPEDITION ITEMS 

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