Too Sick and Weak To Go To Church And It's Driving Me Mad

To say that I'm upset about not being well enough to go back to church and just enjoy being in church and the fellowship of my brothers and sisters over the past month, is an understatement.

My body is continuing to fight me tooth n nail right now, if i attempt playing my drums and getting my heart rate up i feel like I'm having a heart attack because my heart rate is so out of control I cannot get it below 103 bpm when I am awake and only when I sleep do i get my heart to go down to the upper 90's.

The good news is my new primary care doctor is aware of this and he is going to be getting me on some new meds to try and help my pain which is the main cause for my high heart rate or putting on a med to control my heart rate.

This whole weekend i have been completely exhausted to the point that my friend who came over today for a quick visit, took one look at me said, "Miranda you need to go to bed you look really tired" she knows me way too well I can't fool my Mama Dawn no matter how hard I try. So that is exactly what i did when she left and have been there all day.

So yeah I'm mad as heck because I have no strength and can't find the strength to climb out of this bed, take a shower, put on nice clothes, pack my drums and go to church. And I feel like I'm worthless because I can't go out and do ministry and fellowship with my brothers and sisters

New Doctor Means New Plan Of Action To Battle The Side Effects Of Crohn's Disease

I'm finally back home after my 2 days stay with my Grandma and Poppy's. My first appointment with my new primary care physician went extremely well. He knew what Crohn's disease is and even what he had to keep an eye on. And he even said he would be working together with my GI doctor because all my health problems that he has to manage are side effects due to Crohn's disease and or side effects from the medications I'm on due to Crohn's. I was at the doctor's office for 3 hours!!! I never had a doctor take this much time with me in my entire life. I'm not the kind of patient you can just see for 10-15 minutes and then rush me out the door. The nurses and office staff were shocked at how sick i am being so young, they were clearly affected let's just put it that way.

The doctor talked with me for 30 minutes or longer reviewing my monstrous pile of medical records that I have accumulated in just 4 years. He was overwhelmed to say the least with all the paper work on me. But he has a plan and is going to be running regular blood work on me every 3-6 months as needed to check my levels that the GI doctor won't normally check. So I get to have double the blood work done every few months between the 2 doctors, but that is ok, I'm so use to it it doesn't bother me. Thank God I was never scared of needles or blood.

So the plan right now is to keep me on the same meds my old primary care doctor had me on and we are waiting for the blood work results to see if he can change my heart/blood pressure meds and if I need to be on any prescription strength vitamins/minerals due to malnutrition/malabsorption because of Crohn's.

Yeah sometimes I actually get malnourished even though I'm over weight. The weight is due to the steroids not because I eat too much. I don't eat enough and or enough of the right kinds of food because my body rejects it. I told a lady yesterday, that if I didn't have to eat I wouldn't because food=pain and the longer I can go without eating the less pain i am in. The funny thing is, every time i go to the doctor since i was first put on steroids 2 years ago i can never lose this weight but i never gain anymore which i am so thankful for, but even though the scales say no weight loss all my jeans are too big for me now, i'll take losing the inches at least i'm losing something. The doctors don't get on me too much about my weight because they know i'm not doing it to myself, they know it's the meds they have prescribed. And they clearly see i'm not gaining anymore so that to them is fantastic that i have not gained a pound it nearly 3 years. 






So, to see how many inches I have lost on my waist, I put on a pair of old jeans I have not been able to fit into in 3 years since I was first put on steroids. And amazingly, they fit perfectly!!! I now have 6 pairs of pant/capris that are too big for me and have to be put back in storage....hopefully forever!!

And for the next week I am to keep track of my heart rate because I am not on anything for it and my heart rate goes sky high a lot due to Crohn's pain and it feels like my chest is going to explode sometimes. And in a week call him back with the results and if my heart rate is still a problem then he will put me back on medication for that.

 

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 

Miranda Playing Drums At Plug Run Church

Sunday June 29, 2014

Video Of Miranda Caverley playing Drums for the First Time Publicly in 5 years.

Songs Performed
Instrumental
Just Over In The Glory Land
Oh I Want To See Him
A Little Talk With Jesus

Miranda
has been playing drums since she was 3 years old and professionally for
the past 18 years. But due to Crohn's disease, Miranda has not been
able to play for 5 years.

However, after having surgery on
April 25, 2014 and then an extensive recovery over the past 2 months,
Miranda is finally well enough to play again professionally.

Miranda
will be playing every Sunday night at Plug Run Church In Chillicothe
Ohio. Miranda also hopes to also begin playing with other musician
friends in the near future as well, as long as her health continues to
improve.

Making A Joyful Noise Unto The Lord

Last night, I did something I have not been able to do in 5 yrs.....I played my drums at Church!

My church has been asking me for 2 years to bring my drums and start playing for them because they have no drummer.  But due to Crohn's I have not had the physical strength to play, until last night!

I have playing drums professionally for 18 years, I started playing for churches, revivals, and songfests locally when I was 15 years old.  But my love for the drums and a hunger to play started when I was just 3 years old!

Me age 4 or 5 years old with my sister Autumn Age 2 or 3 years old playing on my Aunt Lori's Drum set. This is the drum set I cut my drumming teeth on

One of the last videos of me performing was taken back in 2008 at The Salvation Army's Divisional Women's Retreat those videos are on my youtube channel. The next year I was too sick to play and have not played professionally since that time, that was until last night!

Me at my home church Plug Run last night playing for the first time in 5 years. The set up may look a little strange but with this set up I can have an entire drum set, toms, cymbals, and all with out taking up alot of space

I had so much fun just making a joyful noise unto the Lord, and the entire church was so blessed they told me to have me play for them.  To look out in the audience and see my Grandma, Grandpa, cousins and my husband all watching me with such big smiles on their faces was just so awesome.

My Cousin Richard playing the Guitar, His wife Cookie,and my Grandma singing a special song, and me backing them up on drums.  It was so great to play with my family.

Not only did I get to play for the congregation singing but my cousin Richard sang and His wife Cookie and my Grandma sang with him while I backed them up on the drums. I love playing with my family, we all are very musically talented, Especially my Dad's side of the family, music is in our blood. I'm the only female drummer on my dad's side of the family and I'm the 2nd female drummer on my mom's side of the family.

It was very special to see my husband Jeremy in the audience just watching me with the look of, "yep that's my baby up there play those drums!" He just beamed with pride for me.  I call him my roadie hehe haha.

We had no idea if my body could last the entire service because I have not played this long straight since before I got really sick, but my body held up and I made it through the whole service without getting sick!

My whole life all I've ever known is music and church, and that's what I love to do. I love to play music for the Lord. Even if there would be no one in the audience I'd still be happy to play, because the Lord is there and He is the reason I play, being a blessing to others is just a perk to me. 

Without Jesus I could not do any of this, and He gets all the glory.  I am just a vessel to be used by Him to help inspire and lead people to be saved.  I always tell people, do look at me, Look At Him! Because without the Lord none of what I have accomplished could have happened.

Jeremy did take video clips of me playing, and we will get those clips into a video and upload them to my youtube channel in the next couple of days. 

Spending Time With Friends Is The Best Part Of Living

Accomplished more on my "Living List" today, actually I accomplished everything I hoped to do today and only had 3 hours that the crohn's took me out!

Went and had breakfast at our fav cafe with our "second parents" and also my Dad! Our "Second Parents" had gone on a trip to Ireland last week and while there they bought us some authentic Irish Buscuits!

Real Irish Biscuits flown all the way to Ohio from Ireland by our awesome friends

Then went to the Chillicothe Bikers Church's Annual Hog Roast and Bike Show for Lunch, this was for Dad and Jeremy really, I skipped the food but enjoyed hearing Pastor Foot and Pastor Critter share their testimonies and messages the Lord put on their hearts. 

Me and my Dad at the Hog Roast. Yeah you can tell I'm his Daughter, we look like twins.

Me and a VERY Sweaty Jeremy taking a selfie At The Hog Roast, it was very humid out.

 

 

Jeremy Just Had to take a picture of the HOG! Dad and Jeremy Said it was AWESOME pulled pork!

  I Got sick at the Hog Roast and Dad and Jeremy had to get me home quick.

And after resting for 3 hours the pain and extreme fatigue passed enough to go to Pike Lake with Jeremy, my dad, and a family friend, to their Music Festival to See My good friend Stephanie Stanley perform, and there I ran into my Aunt Linda and her Husband Justin and had a good chat.

I was brought to tears when in the middle of her set Stephanie looks up and says, "I just want to say I to Miranda and Jeremy!" and waves at us. Stephanie knows just how much I've fought to be able to come and sit and listen to her and support her tonight. I just didn't expect her to call me out like that. 

Our Friend Stephanie Stanley Performing with her friend Chad. I love Stephanie's Guitar Bright Cherry Red

I lasted through Stephanie's Set, but had to leave not long after because my body was giving out again on me. Oh and I Got to drive for the first time today in over 6 months!!!! I drove to pike lake and drove home!!! YAY ME!!!!

My body is screaming now and I'm completely exhausted, but to see my friends Pastor Foot and his wife, Stephanie, and our "Second Parents" Dawn and Gary and also spend time with Jeremy and My Dad all day is worth the pain, because tomorrow is not promised and I have to LIVE and do what I can for as long as I can. 







Hope to do more and see more friends I haven't seen in a long time soon.

Now I am going to go take a pain pill and see if I can get some sleep, and see what tomorrow holds.

Things I Have Accomplished On My "Living List" Since Recovering From Surgery

It's 1:30 a.m. here in Chillicothe Ohio. It's quiet and all i can hear is the sound of my husband softly breathing....and occasionally farting in his sleep. (He may kill me for that but admit it even you ladies, we all fart in our sleep)

I'm lying awake completely doped up on anti nausea and pain meds but can't sleep due to the painful itching in my feet caused by very bad swelling I had earlier due to steroids I'm on trying to get this Crohn's disease in remission, that doesn't seem to want to work again. Yes again because I was on this steroid (Entocort) 2 years ago and it didn't work then and it obviously is not working now. And all it is doing is making me retain lots of fluid in my feet and ankles to the point they hurt even though I'm taking a diurectic/blood pressure pill to combat the swelling. So double the pain now which means I'm miserable and back to not being able to do much.

But this is NOT what I got on here to write about in the middle of the night.  Below I'm listing some of the things I've gotten to accomplish over the past 3 weeks since I recovered from rectal/colon surgery to repair damage crohn's had caused. And giving me back part of my life and taking care of 50% of my pain/problems.

Now some of the things on this list may seem TMI (Too Much Information) For some but when you are battling a life long debilitating disease you want to share everything you've gotten to do. So here is what I've accomplished so far in the past 3 1/2 weeks.

--Ate At A Restaurant with my grandparents for the first time in 6 months
--Went To Church for the First time in over 6 months
--Walked in the park for the first time in over a year
--Went Grocery Shopping For the First time in 4 months
--Went Fishing with my husband for the first time EVER in our entire 8 year relationship/6 1/2 year marriage
--Had Sex with my husband like a normal person for the first time in 5 years!
--Made a pineapple upside down cake for the first time EVER
--Went to a local cafe and had breakfast with my hubby and Dad
--Had a day with my dad, We ate at a restaurant then watched a movie together. First time in 5-6 years we've done that together.
--For the First Time EVER, Went to our local library and got my library card and spent a few hours at the library just reading.
--Grilled out on our patio for the first time in over a year
--Went to 3 doctors appointments in less than a month and didn't get violently sick riding in the car to and from the appointments for the first time in over 3 years.
--Started making Video logs on my youtube account after nearly a year of being too ill to do them
--And Finally achieved a Green Thumb! Taking Good care of my Flowers my Grandma bought me for my birthday, I love smelling them and watching them grow and bloom.
--Cleaned my upstairs bathroom for the first time EVER living in this home without getting sick! It normally takes me over an hour to clean our little bathroom upstairs but I did it in 15-20 minutes and didn't even have to take a break or lie down afterward!
--Walked From our house down the street to the grocery store, walked around the grocery store, then walked home. FIRST TIME EVER since we've lived here.  That was really pushing me and I nearly collapsed after but I DID IT!

And this is not the end I keep adding more and more to my "Living List" and I hope to share more that I have accomplished soon