Novel Patient Community

I’m scared about tomorrow.  Tomorrow I have to get a feeding tube put in.  But let me back up.

My liver function has been declining.  But now my GI doctor thinks that my liver problems might be from the oral antibiotic they had me on for my kidney infection, so I of course stopped that.  (My kidney infection seems to finally be better at least.)  With the liver my doctors want to wait 2 weeks to see if the levels normalize with me off the antibiotic.  If not then I’ll need a liver biopsy to determine what is causing it be it Autoimmune Hepatitis or something else, and we’ll go from there.

Over the last couple days, I’ve tried to eat clear liquids again and all I get is more pain and nausea.  I tried for the last time today, and I still had the same horrible nasuea and pain.  So tomorrow I’m going to have a feeding tube put in.  We are going to keep me on tube feeding for a WHOLE MONTH!!!  Why?  To really give the pancreas a chance to rest and calm down.  That means no eating for a month!!!  Ugh.

In the past, we would have just upped my dose of Prednisone to calm down the Autoimmune Pancreatitis, but now the side effects of the Prednisone are causing me too much harm and my doctors are afraid of raising it even more.

So tomorrow I will get a Nasojejunal Tube (or NJ Tube) placed.  It will go up my nose, down by throat, through my stomach, and into my small intestines.  It will allow me to get nutrition without aggravating my Autoimmune Pancreatitis.

So why am I so afraid?  Well for one thing you have to be under anesthesia for it.  Secondly, last time I had a feeding tube placed I woke up afterward into a nightmare.  I had somehow been exposed to latex which I have a life threatening allergy to.

I woke up feeling like I was drowning.  I couldn’t breathe and I thought I was going to die.  I kept coming in and out of consciousness, but each time I awoke there were more doctors and nurses around me.  They couldn’t stabilize me in the Recovery room and had to move me to the ICU and put me on a machine to help me breathe.  I spent the day and night in the ICU recovering from the incident.

Since I found out that I was getting another feeding tube I have been having flash backs to the incident.  I am very nervous something similar will happen again.  Luckily the hospital is a lot more latex free than it was when this happened a few years ago.  But even so, I am having a hard time staying calm about it.

But if all goes well with the feeding tube, and I am able to tolerate the tube feedings well, they might be able to send me home from the hospital on Saturday.  If not, then I don’t know when I’m going to make it out of this place.

It’s already been 14 consecutive days and 20 total days that I’ve spent here in the hospital, but I’ve got to keep the faith!  I know I will make it out of here eventually.  In the meantime, my friends and family have been wonderfully supportive.  I owe them so much.  And when things are at their worst, I’ve been calling upon God to help me through.  He has been such a constant source of strength, comfort, and support.  I lived so long without God in my life, but now I don’t know how I’d get by without Him.

In the end, I just have to deal with things as they come.  Things are what they are, and I know that with my own inner strength and God’s help I can get through anything.  I could cry about it (and sometimes I do), but I’d rather laugh and make the best of things.  Because life is too short.

My growing collection of flowers from friends and family.

Recent Comments:

• Dana Marton commented on Progress! Congratulations, you are one of my picks for the Versatile Blogger Award! Go to my blog post to see
• Diana Lee commented on Progress! I'm grateful to hear you're doing so well. You truly look wonderful.
• cattie commented on Progress! Aww, so happy for you, Lauren, and thanking God you're well. I hope you have tons of fun, an
• Ariana commented on Progress! Yay! So sad I won't be going to ARGfest I love the picture with you standing! Your skirt is
• David F. commented on Progress! Beautiful to see your amazing progress! Congratulations! Have fun a ARGFest… Wish I could be there

© Novel Patient for Novel Patient, 2010. | Permalink | 5 comments | Add to del.icio.us
Post tags: allergy, Antibiotic, autoimmune, autoimmune hepatitis, autoimmune pancreatitis, Better, clear liquids, comfort, Conditions and Diseases, consciousness, couple days, Digestive Disorders, doctor, Doctors, doctors and nurses, ER, Faith, family, feeding tube, feeling, flickr, friends and family, general anesthesia, God, hard time, healing, health, help, hospital, ICU, inner strength, Kidney, kidney infection, latex, life, liver, liver biopsy, liver function, liver problems, machine, Nasojejunal, nasuea, nausea, nightmare, novel, nurse, nutrition, oral antibiotic, pain, pancreas, patient, place, Prednisone, Recovery, Small intestine, small intestines, time today, title, tomorrow tomorrow, tube feeding, week

Arise, walk through the land in the length of it and in the breadth of it; for I will give it unto thee.
Genesis 13:17

He answered them, He that made me whole, the same said unto me, Take up thy bed, and walk.
Then asked they him, What man is that which said unto thee, Take up thy bed, and walk?
And he that was healed wist not who it was: for Jesus had conveyed himself away, a multitude being in that place.
John 5:11-13 (King James Version)

Sunday was a small miracle in the grand scheme of things but not so small to me and a miracle none the less. It was a day that I thought would never happen on many levels. One thing that I thought would never happen was get Baptized, but Sunday was my Baptism. Another thing I thought would never happen was walk at my Baptism, and yet I have gone from not walking from for over a year to no longer using my wheelchair at all in the last three weeks.

I’ve been hesitant to talk about my faith here as its a touchy and divisive subject for some, but I figure this is my blog and my faith has become a major part of my life. I share every other aspect of my life here. I would be remiss if I left something so close to my heart out.

But my faith wasn’t always so important to me. I was raised Reform Jewish, and though I was Bat Mitzvahed, Confirmed, and even assistant taught Religious School at my Temple, I never felt connected spiritually to that faith. So in my more recent adult years I’ve been searching for a faith that helped me feel close to God. For a while For a while I was going to the Universalist Unitarian Church in my area, and though I liked the people and the services very much I still didn’t feel that closeness to God that I so desperately needed.

So when Melissa invited me to join her for services at her at our local Church of Jesus Christ of Latter Day Saints, I thought it was a long shot but worth at least checking out.  I had already learned a lot about being Mormon from her during the time she’s worked for me, and she had suggested I could get a blessing for my health when I went to church with her.

I was totally unprepared for what I experienced; I felt God for the first time in a very tangible way.  I knew right in that moment that my search had come to an end.  That I had found what I had been searching for.  I decided to start investigating the church and taking my Missionary Discussions that I would need in order to covert.  My blessing also said that through faith I could be healed.  It has been amazing how true that has been.

Over the following week I started feeling better than I had in a long time.  I decided to capitalize on the opportunity and try walking again for the first time in over a year.  I started with just a few steps.  I expected for the recovery process to be slow going.  I expected that it would take months to build up enough strength to walk more than a few steps at a time after over a year of being in a wheelchair or bed full time.  But I have been praying every night and the improvements to my walking have been exponential!  And in just three short weeks, I went from my first steps to ditching my wheelchair completely!

So Sunday I was Baptized, and I walked the whole day – including down the steps into the Baptismal Font and up again.  My Dad and his girlfriend Wendy were there which made my very happy.  My Mom chose not to attend which was the only sad thing.  It was one of the very best days of my life! And with it I have found such peace and happiness the likes of which I had never known.  Words cannot describe how grateful I am.  It has been such a relief and such a comfort.  I truly believe that through faith in Christ I have begun the healing process!  And I am so thankful to Him for this and for the closeness I now feel to God.  Through Him I have found what I was looking for and more than I could have ever imagined.

Recent Comments:

• Alison commented on Ladylike: Feeling Feminine in the Hospital I’m sorry you’re back in the hospital. Way to make the best of it though. Maybe I should invest in s
• Renee (aka Shalunya) commented on Love Bug When the right one comes along, he will see past the illness into the heart of the woman he’s fallin
• Alison commented on Love Bug You pretty much said it all. Even if it doesn’t work out, I say enjoy your crush! Don’t wish it away
• Heidi commented on Love Bug I honestly believe there is someone out there for everyone. There are plenty of people who will look
• Alex commented on Love Bug I would point out that whilst you think you may be getting ahead of yourself, from a logical standpo

© Novel Patient for Novel Patient, 2010. | Permalink | 7 comments | Add to del.icio.us
Post tags: baptism, Baptismal Font, blessing, blog, Christianity, church of jesus, church of jesus christ, church of jesus christ of latter day saints, closeness to god, comfort, dad, Discussions, divisive subject, Faith, Genesis, God, grand scheme of things, healing, health, help, Jesus, Jesus Christ, jesus christ of latter day saints, King James, king james version, Latter Day Saints, life, local church, long time, melissa, mom, moment, Mormon, opportunity, peace, place, Religion and Spirituality, religious school, share, small miracle, spirit, universalist unitarian church, wheelchair

Today I walked ten whole feet!!!  It was only my second time walking in over a year!

It is something that for a long time I was afraid to even pray for.  But with a lot of prayer recently, I’ve come to realize that with a lot of faith in both myself and in God, anything is possible.

It’s also taken willingness to put up with significant pain.  But reflecting back on how much pain I was in while attempting to even stand a year ago (which is why I was in the wheelchair to begin with – very severe joint pain), the joint pain is significantly less than it once was.  I’m not sure what the final factor in the lessening of my joint pain is.  Maybe the Rituxan finally kicked in after all these months.  I just don’t know.  But I am so thankful that I have the opportunity to try to get up and out of my wheelchair again!  I decided to think that it wouldn’t hurt as badly as it once did, and so far it hasn’t!

My goal is to walk three days a week – Monday, Wednesday, Friday – leaving at least a day inbetween to rest, so I don’t completely over do it.

In the meantime, I’m trying to taper my Prednisone dose very very gradually.  In the recent past, every time I would try to taper the dose my neurological symptoms would flare – face drooping, increased tremors, numbness, and so on.  And I’ve been afraid that this would happen this time.  But so far it hasn’t.  And there are only three differences this time to which I can attribute my success so far.  Tapering insanely slowly, prayer, and the decision to think positivity.  Some combination of the three would be my best guess at the reason.

Though for years now I’ve considered myself a very positive person, it never ceases to amaze me what the power of positive thinking can do.  And now I’ve added prayer and a faith in God into the mix.  I feel a sense of inner peace I have never known.  And perhaps that is the most healing thing of all.

I have a long road ahead of me.  But I plan to take it one step at a time, one day at a time.  That is how I take all of life.  One step at a time.  One day at at time.  With a positive thought in my head and a prayer in my heart.

Recent Comments:

• Renee (aka Shalunya) commented on Love Bug When the right one comes along, he will see past the illness into the heart of the woman he’s fallin
• Alison commented on Love Bug You pretty much said it all. Even if it doesn’t work out, I say enjoy your crush! Don’t wish it away
• Heidi commented on Love Bug I honestly believe there is someone out there for everyone. There are plenty of people who will look
• Alex commented on Love Bug I would point out that whilst you think you may be getting ahead of yourself, from a logical standpo
• Alison commented on Reporting from the Hospital Hurray for going home! Good job on waiting it out. Sorry I haven’t been in facebook/twitter contact

© Novel Patient for Novel Patient, 2010. | Permalink | 9 comments | Add to del.icio.us
Post tags: Faith, faith in god, flare, God, Handicapped, healing, inner peace, joint pain, life, long time, neurological symptoms, Numb, numbness, opportunity, pain, patient, Positivity, power of positive thinking, Prednisone, rituxan, step at a time, symptom, tremor, wheelchair, willingness

After spending a total of 2 weeks in the hospital, I finally made it home on Friday!  Yay!  I’ve still been getting IV antibiotics at home twice a day for a total of 10 days.  But it is GOOD to be home.  There’s nothing like your own bed after the horribly uncomfortable hospital ones.  There’s definitely nothing like cuddling with your dog in that said bed.

The power was out yesterday and I found myself struggling (sadly) for something to do.  So I painted this picture of a Healing Growth Tree.  Rather symbolic.

Recent Comments:

• J commented on Crooked Smile I just wanted to let you know I gave you a couple of blog awards You can find them at this post:
• J commented on Crooked Smile I’m sorry to hear the inflammation is back. ((Hugs)) Glad you caught it early. I’m very glad you are
• Katgirl commented on Crooked Smile AGH! I wonder how long it might have gone on had you not done the daily mugshot? Good catch. But sor
• Christy Dena commented on Crooked Smile The best forms of happiness and love come from those dark and difficult times. The fact that you smi
• Denise commented on Crooked Smile Crooked smile or not, you are a beautiful person. Inside and out. Keep you head up and hang in there

© Novel Patient for Novel Patient, 2009. | Permalink | 4 comments | Add to del.icio.us
Post tags: antibiotics, dog, healing, hospital, painting, picture