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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.

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

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© 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

I don’t really know what to write.  I’ve been kind of a writing funk.  More precisely the stress of everything it getting to me.  I’m in trouble financially, my doctors aren’t currently doing anything to help me get better, and I’ve been doing a lot of “being there” for my friends and family which I am more than happy to do – it’s just that its emotionally draining.

It’s so important to stay stress free when you have any chronic illness but especially one that’s autoimmune related.  High levels of stress lead to flareups of my illness.

Once upon a time I was a cutter.  Since then I have found other ways to de-stress that don’t involve hurting myself.  Now I have a little chocolate therapy on occasion (or rather frequently), I watch a favorite movie (usually The Princess Bride when I’m not feeling well), I talk to a friend or my sister about what’s bothering me, I scrapbook, or I force myself to write in this blog.  I’m feeling a little better already.

What do you do to de-stress when the road gets too bumpy?

Recent Comments:

• Marti commented on Better Enough? Way to go Lauren! You know what to do. You’re doing it! With help from above, within, beyond and all
• Lairosiel commented on Better Enough? you’re probably one of the strongest person I “know” I really hope for you to getting BEST! the last
• Alison commented on Better Enough? I’ve been asking myself this a lot these last few days. I know next month when I see my doctor he is
• ~ Dad commented on Better Enough? “All that man needs for health and healing has been provided by God in nature, the challenge of scie
• Heidi commented on Better Enough? You are an inspiration!!! I love the last photo of you, standing tall with a big smile on your face

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© Novel Patient for Novel Patient, 2010. | Permalink | 4 comments | Add to del.icio.us
Post tags: Add new tag, autoimmune, autoimmune diseases, Chronic Illness, Conditions and Diseases, disease, Doctors, faith, hard time, health, illness, illnesses, Management, mental health, Princess Bride, stress, Support Groups

Part of dealing being chronically ill is learning to smile through the hard times.  But right now though I’m having a hard time doing even that.

On Monday night, when I went to take my DailyMugShot, I wasn’t satisfied with my first, second, or even third attempts at my picture.  My smile was crooked in all of them.  Finally I realized that no amount of retakes would correct the problem.  I couldn’t make my face smile evenly on the left side.  In fact, the whole left side of my face was drooping slightly and my pupils were unevenly dilated.

I tried not to panic.  I looked back at my older daily pictures and noticed that this had been going on all week and getting worse with each picture.

A visit to my neurologist confirmed my suspicions that as I’d been trying to taper my dose of Prednisone my brain inflammation was returning.  So now I’m back up on an even higher dose of Prednisone to try and get it back under control.

In the meantime, I’m trying to continue to smile through the hard times.  Even if my smile is a crooked one.

Recent Comments:

• Lelia Rose Foreman commented on The Unexpected My website is in the process of being built. I am extremely slow at such things. On the other hand,
• Katgirl commented on Seeking an Accessible Vehicle Perhaps, don’t think of it as a permanent wheelchair. If this chair helps you be more comfortable, c
• Marti commented on Blogiversary: A Belated Thanksgiving And we are grateful for your upbeat willingness to give this battle your all and stay true to your c
• Britta commented on The Unexpected It sounds like you have Chronic Lyme Disease! There is hope…even though it is a big controversary
• Jeanne commented on Visualizing Symptoms Lauren, Thinking of you! Jeanne

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© Novel Patient for Novel Patient, 2009. | Permalink | 8 comments | Add to del.icio.us
Post tags: brain, brain inflammation, Chronic, crooked smile, DailyMugShot, hard time, mugshot, neurologist, picture, Prednisone, pupils

It’s hard to stave off the boredom that sets in when you are sick all the time with multiple chronic illnesses.  I have hard time focusing for long on things like TV and movies.  I can’t read for hours and hours like I used to.  The brain fog gets in the way.  And as big of a computer nerd as I am, I can only spend so much time on it.  So I have to find other ways to fill my time, and I mostly fill it with arts and crafts.

I have a huge passion for scrapbooking!  I do it almost everyday.  I even do it from bed to conserve energy which is in short supply lately.  My caregiver Melissa is also obsessed withscrapbooking , so she helps me with the things I have trouble with.  Cutting straight when my tremor is bad or my the arthritis in my hands is acting up.  Not only doesscrapbooking give me something to do, it’s extremely therapeutic to exercise my creativity.  I’m also making something I will treasure forever.  It can be bittersweet looking back on times when I was healthier and just plain sadscrapbooking pictures from long hospitalizations, but its a part of my life and it’s good to remember.  The good and the bad and the in between.

I spend a lot of time in my room being ill, so I also enjoy making items to decorate it with.  Over the last few days Melissa and I decoupaged my lapdesk I use to put my keyboard and mouse on while I work at my computer from bed.

Finally I enjoy painting.  I usually use watercolor-colored pencils because they are neat enough to do even from bed.  I like to paint things that symbolize my internal process.  It helps me process the experience of living with a chronic illness.  My often abstract and surrealistic art makes it more tangible.  I think this one I did earlier this week speaks for itself.

Recent Comments:

• Lu commented on Dreaming Big You are so inspiring to us all! We are all rooting for your novel!
• Shannon commented on Taking a Stand Yo sissa I am so proud of you and how you always reach that next level of courage and persistence. O
• Katgirl commented on Taking a Stand Congratulations on standing! That is a huge obstacle to overcome. Hopefully it will become easier wi
• Denise commented on Taking a Stand God Bless You! Stay strong and fight!!
• Pixie commented on Taking a Stand Proud of you. Always.

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© Novel Patient for Novel Patient, 2009. | Permalink | 2 comments | Add to del.icio.us
Post tags: art therapy, arthritis, arts and crafts, boredom, brain, brain fog, caregiver, Chronic, Chronic Illness, colored pencils, computer nerd, creativity, hard time, health, hospital, hospitalization, illness, illnesses, lapdesk, life, movie, pain, painting, picture, scrapbooking, surrealistic art, tremor

1. The illness I live with is:  Sjogren’s Syndrome, but I also have Autoimmune Pancreatitis, Autoimmune Hepatitis, Hashimoto’s Thyroiditis, Fibromyalgia, and Arthritis.
2. I was diagnosed with it in the year: 2007
3. But I had symptoms since: I was a small child.
4. The biggest adjustment I’ve had to make is: to life in a wheelchair.
5. Most people assume: that I’m too young to have this many health problems.
6. The hardest part about mornings are: waking up way to early in pain and never getting enough sleep.
7. My favorite medical TV show is: House, I suppose, but I don’t really watch it anymore.  I have a hard time concentrating on TV.
8. A gadget I couldn’t live without is: my mac.  It is my connection to the rest of the world.
9. The hardest part about nights are: trying to get sleepy despite the pain.
10. Each day I take 28 different medications. (No comments, please)
11. Regarding alternative treatments I: am only open to trying ones that have been shown to work in some sort of clinical trial.
12. If I had to choose between an invisible illness or visible I would choose:  an invisible one.  Since I’ve recently started using a wheelchair, my illness has become move visible and I long to look “normal” again.
13. Regarding working and career: I am currently on disability.
14. People would be surprised to know: that I don’t remember what “no pain” feels like.
15. The hardest thing to accept about my new reality has been: that I can’t just push through the pain and exhaustion without making myself sicker.
16. Something I never thought I could do with my illness that I did was:  travel for pleasure, but I recently went to an alternative reality gaming conference in Portland.
17. The commercials about my illness: don’t exist (which could be why no one seems to have heard of it).
18. Something I really miss doing since I was diagnosed is: hiking and other physical outdoor activities.
19. It was really hard to have to give up: my independence, but I’ve had to learn to accept a lot of help from others.
20. A new hobby I have taken up since my diagnosis is: scrapbooking.  I’m completely obsessed and even do it from bed when I can’t sit up at the table.
21. If I could have one day of feeling normal again I would: backpacking through Australia.
22. My illness has taught me: that happiness is where you make it for yourself.
23. Want to know a secret? One thing people say that gets under my skin is: “You just need to exercise more.”
24. But I love it when people: Call or email me out of the blue to let me know they are thinking of me even if I haven’t been up to hanging out lately.
25. My favorite motto, scripture, quote that gets me through tough times is:  Everything might not happen for a reason, but you can make a reason out of everything that happens.
26. When someone is diagnosed I’d like to tell them: that life isn’t over and that they will find ways to cope and adjust.
27. Something that has surprised me about living with an illness is: how much opening up and sharing about my illness has given me the opportunity to meet new people who in turn share about themselves.
28. The nicest thing someone did for me when I wasn’t feeling well was: lug all my scrapbooking supplies to me in the hospital, so I could take my mind off being there with my favorite activity.
29. I’m involved with Invisible Illness Week because: I hope by raising awareness people will have more sensitivity and empathy for the people in their lives with invisible illnesses.
30. The fact that you read this list makes me feel: hopeful that my sharing about my experiences will make positive difference.

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.comRecent Comments:

• Donna E commented on Pain Scale I, too, live with several chronic pain conditions: rheumatoid arthritis, fibromyalgia, raynaud’s, ch
• blog about health and medical devices commented on Pain Scale health care is much better before the disease, whatever its scale
• alan m rogers commented on Dreaming Big It’s awesome to see people with chronic illness taking up NaNo – and other challenges. I had to leav
• Steve commented on Dreaming Big Go for it! I’m rootin for you… keep your dreams alive… always! Here’s some food for thought to h
• Grandma commented on 10 Ways To Stay Organized With A Chronic Illness I appreciate you doing this blog…you have put alot of work into it and it shows. As I am reading t

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© Novel Patient for Novel Patient, 2009. | Permalink | 3 comments | Add to del.icio.us
Post tags: alternative reality, arthritis, autoimmune, autoimmune hepatitis, autoimmune pancreatitis, diagnosis, Disability, exhaustion, fibromyalgia, hard time, health, health problems, hospital, illness, illnesses, Medication, pain, scrapbooking, sjogren's syndrome, symptom, treatment, wheelchair

In an effort to stay constantly busy and stave off boredom (every Novel Patient’s ultimate enemy), I tend to take on a lot of projects.  And lately I think I may have taken on a few too many.  I tend to have a hard time finding that balance between bored and too busy.  Lately I’ve been tipping the scales towards the too busy side.  And then comes the stress which isn’t good for me.  Stress can make my diseases worse.  And I definitely don’t want that.

But being bored is a much worse evil.  My body may be sick but my brain doesn’t have to atrophy.  Nothing makes me more depressed than feeling like my mind is turning to mush.  That I am wasting my life.

So I’ve found ways to do something with my life despite being sick in bed most of the time.  The computer is a god send.

But my constant question is: how to find that balance and be just busy enough?Recent Comments:

• Lisa commented on Invisible Illness Week – An Interview With Lisa Copen Thank you so much for hosting this today on our first day! And seeing the comment already made makes
• Amanda commented on Invisible Illness Week – An Interview With Lisa Copen This is totally awesome!!!
• Katgirl commented on Rough Patch I find it difficult to rouse myself out of the doldrums when I am feeling horrible, too. I hope you
• Novel Patient commented on Rough Patch Thanks SirQuady! It means a lot to have your support! *hugs back*
• SirQuady commented on Rough Patch I don’t have much to say except *HUGS*, and I’m praying for you!

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© Novel Patient for Novel Patient, 2009. | Permalink | 3 comments | Add to del.icio.us
Post tags: atrophy, balance, boredom, brain, Busy, Diseases, hard time, mind, novel, patient, question, stress, wasting my life