JMC VLOG Episode 39: An Update After a Long Hiatus

Topics discussed:

Return, Jeremy graduating college 2013 , Jeremy starting new contract job after college 2013 , Jeremy starts permanent job in March 2014, caregiver roles with Miranda's ailing health with Crohn's disease, Miranda's recent colon-rectal surgery.

Recovering From Colon/Rectal Surgery Due To Crohn's Disease

I'm writing this lying in my bed resting as I continue to recover from the rectal/colon surgery I had 2 weeks ago yesterday, on April 25 2014 at OSU East hospital in Columbus Ohio.

This surgery was my first official major surgery needed due to the crohn's disease. After 7 years of daily diahrea up to 10 times a day, the surgeon discovered I had 2 internal hemroids as well as fissure (tears in my colon/rectum) as well as a large skin tag (similar to a mole) on the inside of my colon/rectum. These things were causing me so much pain, to the point I literally could not sit down on my bottom and was in constant agonizing pain. So the hemroids n the skin tag were removed. And hopefully the fissures can heal on their own by getting the diarrhea/too many bowel movements, under control and brought down to a minimum.

Since the surgery however, I've had 2 slight set backs. After my surgery I stopped having bowel movements and became impacted in my bowels. On the 3rd day after the surgery and pushing an extreme amount of laxatives, my bowels finally moved, and it was the worst pain I've ever felt in my life to the point my grandma thought I was going to collapse on the floor when everything did break lose. She literally had to help hold me up on the toilet while my bowels moved. And I have gotten laryngitis again due to the anesthesia and my allergies and the fact my throat is so sensitive. I will more than likely be without a voice for 4 to 6 weeks again.

However, This week Wednesday night into Thursday, I became impacted again even though I was continuing to push the extreme amount of laxatives. After 12 hours of administering 3 enemas over that amount of time, Jeremy my husband finally got my bowels to move. Jeremy had to take an emergency day off work because I was so bad. We were very afraid we might have had to take me to the E.R if he hadn't gotten my bowels to move. What we have realized is that I'm not constipated, but that due to my colon/rectum being so inflamed from the surgery no solid stool even soft can get through so it starts piling up on top of the other until it's this mass. So I have to have complete lose stool until I fully recover. Meaning I'm on only soft foods and high fiber foods along with taking up to 12 tbsp.'s a day of laxatives and a dose of metamucil in a glass of water. That seems to work so far.

Then yesterday the scariest thing happened to me, something crohn's patients can have happen but I had never experienced before. Jeremy got up at 5 a.m. to get ready for work and was in the bathroom getting ready. I was in bed and felt I needed to have a b.m. so I went in sat down on the toilet, I pushed just a little to get the little bit of solid poo to come out. It did, and I stood up to wipe and when I did n looked in the toilet there was lots of red blood and some was on the toilet seat and I began to feel something running down the back of my leg...it was blood and quite a bit coming from my rectum. Jeremy nearly starts yelling and we both are scared to death. I sit back down on the toilet as jeremy calls my grandma, she answers the phone and if the bleeding doesn't stop in the next few minutes we've got to get me to the E.R. Luckily the bleeding only lasted 5 minutes. 

After consulting with my surgeons nurse they believe I tore my rectum/colon causing a new fissure when I did that little push to get the poo out. And that i've got to make sure I don't have any solid b.m.'s for at least another 4 weeks.

Thankfully I've had no more bleeding like that today. And I pray I never do again, my poor jeremy was so terrified, I'll never forget the look on his face when he saw the blood coming out of me. I'm crying right now just thinking about it.

Jeremy told me that this surgery n recovery along with fighting the disease at the same time, has been the hardest thing we have faced so far in our life together. For him, it has nearly broke him emotionally and mentally watching me go through all this, taking care of me and going to work 5 days a week all at the same time. But we just keep fighting because to us giving up is not an option. We just take everything one day at a time, and let God lead us.

I'm going to end here for now and will make another update in a day or 2.

Facing The Most Scary and Trying Time So Far In My Fight Yet

So much has happened in my and my husband’s life over the past month, that I just cannot write it all in one blog post.  And just to think about writing it down makes me so emotional that I just start to cry. So To allow you to know I will share my facebook updates from that past few weeks.  And then I will write a separate blog about tomorrow, as my mom takes me to OSU East Hospital for more Pre Op Testing. And also write about the results of my pre op testing and surgery when they come in.

Facebook Timeline Updates From Past To Present

7 March

Big celebration happening tonight in the caverley home. I'm not allowed to tell, but my hubby will be making a BIG announcement soon, and I will share all when he does. But for now splurging on some Ben and Jerry's ice cream for dessert and taking my honey out for dinner. — feeling proud.

9 March

This is the big announcement: My husband starts his new job tomorrow as a data analysis at McGraw hill education in blacklick Ohio. We hope to move closer to his job in the next 7 months. So, goodbye chillicothe, after 33 years of living here I'm ready for a new adventure and a change of scenery.

14 March

My husband just finished his first full week at his new job. So proud of him. Lasagna, garlic bread and pie for dinner to celebrate national pi day. Because I married a geek — with Jeremy Caverley.

27 March

At grandma's for the night, then heading to the hospital in the morning to have blood work done, and a echo cardiogram and if everything comes back normal, I'm cleared for surgery at the end of next month. Asking for continued prayers as I continue to fight this disease and against all the side effects that it continues to cause. — feeling ready.

28 March

Urgent prayer request: after 2 hours of having my blood work done, the doctor's office was calling me to inform me that my potassium level was dangerously low. The sad news is I'm already on potassium prescription strength pills and still my level is low. I told the nurse I wasn't surprised because of all the vomiting and diarrhea I continue to have and that there are days I can't hold the medication down especially the potassium Med because it is very hard on the stomach and can cause vomiting n diarrhea by itself.

So the nurse talked to the doctor and there are only 2 choices left for me and the last one I really don't want to have to do. The first option which we are trying is another form of potassium in tablet form that dissolves in water like alka seltzer tablets and I drink this 2 times a day, but if I continue to vomit and not be able to get my level up then we are faced with the last option. If I can't get this under control by pills, then I will have to have potassium infusions. Meaning, once a week at the least I will have to go to the hospital be hooked up to iv's and a heart monitor and have the potassium put into me that way either until the doctors can get my condition under control or possibly for the rest of my life.

This is a very serious situation I'm constantly fighting against because if my potassium level drops too low I can go into cardiac arrest and die. And or my kidneys can shut down just to name two of the things that can happen if this goes un treated.

Due to my limited diet due to this disease and my body not absorbing the nutrients in the food i eat properly, this is my constant battle. Battle against malnutrition, dehydration and the side effects of them like dangerous drops in my levels.

My only hope is that God heal my stomach/body so that I can hold down the medication so I am not faced with having to do the infusions.

What hurts even more is over the past few weeks I've actually had people tell me/write me that i'm pretending to be worse than I am and that i need to stop talking about my condition and asking people to pray for me. And now as I'm preparing for surgery i also find out about this. If I'm pretending then why are the doctors urgently calling me and scheduling test after test and prescribing medications and scheduling surgery!?!? Either I am really this sick or i'm the biggest con artist who ever lived oh and I'm the one footing the bill so really the jokes on me if I am.

So please also pray for the people who have said these awful things to me. And again thank you friends for praying for me, because God is the only one who can heal me, and your prayers I know make a difference.

28 March

This version of the song Safe And Sound is my go to song right now on days like today. I lay in bed and just wrap my arms around Jeremy Caverley and we hold each other and listen to this song and yes, I begin to feel safe and that everything is going to be OK and we hope that tomorrow will be better. And continue to believe God has a purpose in the face of all this adversity.

The movie in the video is "Now Is Good", and it is a really great but sad movie.

● tessa & adam | safe and sound [now is good]

www.youtube.com

WATCH IN HD! :-) Takes hours to make, seconds to comment :-) Hey guys .. this time i vidded for the first time a movie .. it's now is good. i love it sooooo ...

29 March

Rough morning....was woken up out of a dead sleep to up chucking and running to the bathroom. Going to attempt to hold down food and take the potassium tablet.

---Comment in response to how I’m feeling: Yes and No, even after taking one morning stomach Med, eating and forcing down the potassium, then an hour later taking another stomach med, I started dry heaving again and had to be given phenergan to try n stop the nausea. Now I'm sleepy from the phenergan and running to the bathroom with diarrhea (sorry if tmi). However, watching a person doped up and trying to rush to the toilet is kinda funny, I'm laughing at myself so laugh with me. This is why I wasn't forcing the Med down because I can't hardly keep it down. And I still have to take the potassium one more time this evening and at this point I don't know how it is going to go, bed rest, crackers, n water are my companions today. Along with praying God help me to keep it all down.

30 March

Really sick again today from pushing the potassium tablets down me to try n get my level back up. — reading Bible with Jeremy Caverley.

31 March ·

Update on potassium level.....after 2 days of force feeding the potassium and being very very sick from it and bed ridden, my level came up to the lowest a person can be without needing to have an infusion, but today I was unable to take any potassium or I would not have made it to the lab to get the blood test done. 20 bathroom breaks and 6 trips to the upchuck bin in 48 hours and another 7 bathroom breaks today, my bathroom breaks and upchucking has doubled what it normally is on a daily basis just due to crohn's alone.

The doctor realizes I can't keep forcing the potassium down me, but has not come up with a plan yet and is still trying to not do the infusions because it is so dangerous and only wants to do them still as a last resort. Yet tomorrow and the day after my level will once again start to drop and I'll be back in the danger zone once again.

Crazy thing is they actually asked me if I have tried eating bananas and drinking orange juice!?!? If I could eat and drink that stuff I wouldn't be in this situation. Maybe it was just one of those dumb questions they have to ask, but really!?!?

I'm not going to pretend I'm not scared, because I am but I know at the same time God is in control and I'm continuing to trust in him and lean on my hubby Jeremy Caverley who is doing an amazing job taking care of me through all this. And I also need to give a big shout out to my Dad, he stayed the whole day with me and even watched the movie Frozen with me. — feeling scared.

2 April

Today will be spent looking for a new doctor.....again. Got thrown under the bus by one of the doctors who has been caring for me even before I was diagnosed with Crohns and certain health problems that a GI doctor nor a surgeon can take care of. Family and friends are at a loss for words as to why I'm being treated this way, and so my Grandma and I will be on the phone most of the day today calling doctors to see if we can find one, that will take me under their care, and also calling my specialists to see what they can come up with as a care plan/preventive plan for these certain medical problems I'm continuing to face.

Because as of yesterday, this doctor told me to stop taking all medication that he prescribed and go back to my GI doctor because he isn't going to be handling these problems. Even though these "problems" are high blood pressure and high heart rate, which I have had problems with even before I was diagnosed with crohns and have been on medication for over 2 years and now I have no doctor to monitor this.

So let us pray my blood pressure returns to a normal level and also my heart rate, and that my potassium doesn't drop even one point because I don't have anyone to monitor these conditions until I can find a new doctor. — feeling beaten.

2 April

Prayer Request: Today prayer warrior friends, I want to ask you to pray for my husband Jeremy Caverley. He is literally at the end of his rope dealing with this disease that I continue to fight and also the fight we are having with the way one doctor and the nurses are treating me.

My husband literally cried for 30 minutes last night, and even questioned how he is suppose to continue to watch me go through this and go to work at the same time. I am very concerned that if something doesn't give to the lighten the stress and strain, that he may have a nervous break down.

Over the past 6 days Jeremy has broken down numerous times. And I just keep praying God help him to deal with the stress and chaos we are facing. Because I don't know what else to do. — feeling lost.

8 April

There's nothing better than watching a Disney movie when you are feeling yucky. — watching Bambi.

8 April

Heading to OSU East outpatient clinic next Tuesday morning....Surgeon has scheduled more pre operation testing for me to make sure my levels n everything are OK for him to do the surgery on the 25th. My mom is taking me, and luckily I don't have to do any preps or fasting.

Jeremy Caverley Wrote and tagged me

8 April

Sometimes you can't save people from pain, you have to go through it with them... — with Miranda Caverley.

9 April

I'm still here and i'm alive, i'm not ok, but i'm continuing to fight, for those that have been worried. — feeling beaten.

11 April

Very very sick today, at my grandma's stuck in bed. but this little kitty Miss Lily is always by my side when I'm here stuck in bed. She loves on me and keeps me company. I love this kitty 

Now you understand why I couldn't try and re-write and re-live all this over again.   It's absolutely heartbreaking and unbearable at times.  I still have not found a new Primary Care Doctor but my Grandmother and I are going to be calling more places this week. Our hope is to find a doctor who knows what Crohns disease is and can handle treating the side effects the disease and also medications at times can cause that the GI doctor can't take care of.

Overcoming Trials on Valentines Day and our 7th Anniversary

On Valentines Day Jeremy and I celebrated our 7th anniversary, of the day Jeremy flew from California to Ohio to meet me face to face after 3 months of talking through the internet, video chat and telephone while he served in the U.S Coast Guard.

 7 years we have made it and we are still in love and even more so than that day I saw him standing in the terminal waiting for me to pick him up, and I walked up to him and kissed him for the very first time and knew immediately....this was the man I was meant to spend the rest of my life with. 

Though at the time we didn't know what we were to endure to be together. Every step of our relationship has been a battle against forces beyond our control. Yet we have persevered.  Valentines day this year was the worst anniversary day we've ever had, so far in our life together.  I will not go into much detail, but on that day last Friday we had an emergency hit us and it was nothing we could stop.  Due to this emergency I was forced to cancel my upcoming surgery at OSU East with my colon/rectal surgeon, which I desperately need because I'm in such agony with the condition this disease has caused.

But there was nothing that could be helped to change it, and we even had to ask for help from my family to get us through and we still do not know if this calamity is over with yet.  

As soon as this "emergency" has been taken care of and is over, I will be rescheduling my surgery and the other heart test I need to make sure my heart is healthy enough to go through with being put under anesthesia.

On top of all this, due to the constant acid reflux/gerd/vomiting I have been been fighting for nearly 7 years now.  I have gotten laryngitis and have not had a voice in over 4 weeks now.  I went to a throat specialist and he sadly told me there was nothing he could do because until the GI doctor gets my stomach condition under control my throat will continue to be irritated. But amazingly enough the doctor was surprised to see that when he put the snake cam down through my nose and into my throat, that my vocal cords have ZERO damage to them after nearly 7 years of the acid/bile eating at my throat!  That to me is a miracle from God, because he has preserved my voice in the face of this disease/condition, so I can sing again once I get better.

Through all that I have been through God has continued to preserve my gifts/talents.  I can still sing, I can still play drums (when I have the strength), and I can still play piano and write and learn beautiful music.  Even though I cannot use them the way I desire to, playing in church and traveling playing for special events around ohio like I use to do.  From the age of 15 when I first began playing drums professionally in church, all my gifts I have given to God and made a covenant with him that I would always use my gifts to Bring Glory to Him and not myself.  For with out God I could never have learned to play the instruments I do and sing as I do without Him.  For I was never trained or given lessons on anything I play.  I taught myself and God blessed me with the knowledge.  Jeremy calls me a prodigy because he doesn't understand how I can sit down at the piano and just by listening to a piece of music, I can figure out how to play it within minutes!  No sheet music no nothing just listening.  My mother says that God made me very special and she has no idea how I do it either. 

Even though no one can hear me, I still continue to play and practice my instruments when I have the strength and as soon as I can get my voice back I'll continue to practice my vocal exercises and sing. 

As a gift to Jeremy for valentines day I learned a beautiful piece of Music Called "Two of Us" Written by the famous Japanese Composer Joe Hisaishi.  It is one of my favorite pieces I have EVER Learned and truly allows you to feel the Love Jeremy and I have for one another. 

Link To Valentines Day Video: A Song For Jeremy
https://www.facebook.com/photo.php?v=10151851743210286&l=5038259699561550152

Trusting God To Provide Part 2

As in my previous post I said I had some other things to share.

Part 2 is about what happened at my appointment with the colon/rectal surgeon appointment I had nearly a month ago.

The surgeon could not even do an examination of my bottom because he discovered I have 2 fissures in my rectum. Fissures are tears or open wounds on the colon/rectum and are extremely painful. And in my condition they are not going to get better says my gi doctor so I am to call the surgeon back after Christmas and make another appointment for another examination, but this time the gi doc wants the surgeon to put me under anesthesia so he can do a full examination and see what all is going on and if I may need surgery to heal these fissures and hemorrhoids.

My body is literally starting to fall apart due to have diarrhea and vomiting every day for the past 6 years straight.

The surgeon also said he believes I have another disease/condition besides crohns disease that is causing such extreme symptoms and problems. But they really don't know what that disease/condition is.

So we just have to keep leaning on The Lord and have faith that he will provide. Provide the doctors with the knowledge and answers to help me.

So now I have got everything out and I feel better for writing it and not keeping all this bottled up inside and sitting here worrying and not talking about it.

One day at a time is how I deal with everything. Make it through today and hope for a better tomorrow.

Trusting God To Provide

Since my last update just over a month ago, we've had some new developments.

First, I got a letter from Medicare/govt. Run health insurance that I no longer qualify for any kind of help to pay for the crohn's medication I'm currently on, because my husband now has a job since graduating from college. So to stay on my current medication I need to come up with nearly 700 dollars every 2 months to pay for the medication, and if I would go on a different medication it will be even more expensive and I still will not get any help. In the past year to help pay for the nearly 700 dollar copay every 2 months I got help through my health insurance and also a non profit organization. But both go by how much your income is and they also don't take into effect how many bills you have to pay each month either, and due to this life long disease we are so much in debt to medical bills, even with insurance that we have no money to save or to even help pay on the copay for the crohn's medication. 

I talked to my doctor and they have done everything they can to get me help and literally between the doctors office and me making calls myself to numerous charity organizations and even to the crohn's and colitis foundation locally and nationally, there is no help for me. And I also found out that there are many people in my same situation, they have health insurance but it doesn't cover enough to make the medications we desperately need affordable to us.

So as of January first I will no longer be on any medication to fight this disease. And the only medication that is affordable to me is a Med that I have already tried and hasn't worked, but it is the only thing we have to try if my health starts to deteriorate more than what it already has. We have to pray that some way some how the govt. Will change their ruling on giving people assistance for these extremely expensive meds and give people like me help. Pray that God heals me, and that doctors and scientists find a cure for this disease. Because no matter how rich you are no one can afford to pay out this much for medication for the rest of their lives.

There is also more bad news but I will save that for another day. It may seem everything is out of control, but I know God has it all under control and he will make a way for me and take care of me.

I'm Still Here And I'm Still Fighting

It's been just over a month since my last post.  So it's time to make a new update. 

Made it through Halloween without wanting to strangle someone with all the candy and food around that I can't eat. 

And to combat the depression that sometimes can come with celebrating Holidays that I can't partake in Jeremy and I had a Wizard Of Oz party last month!  We had family come over and had a wonderful time watching the 75th Anniversary Edition of the Wizard Of Oz along with a few Halloween show favorites like "It's The Great Pumpkin Charlie Brown" And "Garfield's Halloween Adventure"

Me In my Oswald The Lucky Rabbit Hat At The Party

A Big thanks to Jeremy for being the best host EVER. I was able to just sit and not stress or strain my body anymore than it was and I was able to enjoy having my family with me in my home all together for the first time. 

And Thanks To the new medicine the doctor put me on to help with my stomach spasms and intestinal spasms.  I have not been throwing up as much.  Instead of throwing up every other day.  I'm throwing up at the most 2 times for the whole week!!! And I don't dry heave like I use to constantly, I do that a few times a week now instead of daily.  But my other symptoms are still not under control, the daily running to the bathroom 6-10 times a day has not let up, the severe intestinal pains that double me over and lay me up in bed, and there are still days during the week I'm stuck in bed either due to side effects of the medicines or because of Crohn's Disease its self. 

Yesterday I had to break down and actually take a pain pill for the first time in over 4 months! For some reason that even the doctors don't know I continue to have severe intestinal pains, and yesterday was the worst I've had in 4 months.  For 24 hours I was in Constant out of control pain with no relief.  And by yesterday morning I was at the end of myself.  So I took to facebook and asked my friends to pray for me that God would ease my pain.  I spent majority of the day in bed in a fetal position, taking pain pills, and watching cartoons, because we all know watching cartoons when you're really sick always helps, or so I think. 

My friends started writing that they were praying for me and I truly believe in the power of prayer.  Because whenever I ask people to pray for me that God ease my suffering.  God always listens and my pain did subside enough to where it was bearable, and when Jeremy came home at 7p.m. last night from work I was able to be up out of bed and enjoy the evening with him.  And my pain level was manageable that I went to bed last night and slept the whole night!

And the only problem this morning was I threw up, so I took some medicine to stop the nausea and spasms and haven't had too bad a day I must say.  Even though another symptom decided to pop up this afternoon.  I don't know if it's a side effect from the meds or the disease. But every so often My hands and feet will break out in tiny blisters and after they pop my hands and feet look like I've had a bad sunburn because my skin starts to peel.  It doesn't really hurt it's just weird, then it goes away for a few months and then randomly it will pop up again.  Just like the boils/sores that have been popping up on my torso for over 3 years.  I use aloe vera to treat with and it helps heal it up. 

In 2 weeks from today I will be at Ohio State University East Hospital seeing a surgeon about what needs to be done about these hemorrhoids that this disease has caused and whether I need surgery or treatment to help them.  I'm nervous yes because no one wants to have to go through surgery no matter how minor or severe.  But my good friend and second Mom Dawn is taking me and she always is such a comfort.

But right now unlike the past 2 years I do not have any doctor's appointments until after the holidays and I really hope it stays that way.  And that this body will allow me to spend Thanksgiving and Christmas with my family.  That's what I want for Christmas to be well enough to spend it with my family, oh and for a Cure for Crohn's Disease. 

I guess that is it for now, I will give another update once I've seen the surgeon and we get some more answers as to what we are doing next.  God Bless