It’s a terrible thing to live in fear.  I make a point of not letting my fear overcome me.

When I was a very young girl a fear of guns ruled my life.  I was afraid of being shot wherever I went.  I never wanted to leave the house for fear of being gunned down.  I was especially afraid of going to McDonald’s because I had overheard on the news that a little girl was shot and killed at one.  But even as a 5 year old, I knew that my fear was irrational, and kept it a secret.  I eventually conquered my fear years later when I was forced to participate in riflery at sleep-away camp.  Afterward, I vowed I’d never let a fear rule my life again.

But fear still creeps up now and again.  And it has certainly crept up today.

Today my doctor told me that he is concerned that if we don’t stop and reverse whatever is wrong with my liver, I will end up in liver failure.  My declining liver function may be a result of either Autoimmune Pancreatitis or Autoimmune Hepatitis or both or something else entirely.

I am, frankly, terrified.  But I refuse to let my fear rule me.  As a child I was so embarrassed of my fear that I suffered in secret silence.  But today I reached out and told all my friends the news and let them be there for me.  They more than rose to the occasion, and I am so grateful for them.  And now I am blogging it out.  Sometimes it makes it feel so much better to get it all written down.

I may still be afraid, but it doesn’t control me.  I can use coping mechanisms like these to control it instead.

Image by Jody Art via Flickr

Recent Comments:

• amanda commented on Scrapbooking My Illness Journey great idea! see my blog for my take on scrapbooking your illness, too! {hugs}
• Laura H. commented on Definitions: More Than Just a Novel Patient I've been thinking about what you've written here for a few days now, but I'm still s
• Selena commented on Scrapbooking My Illness Journey The story about your sister really touched my heart. I also love your scrapbook pages! Thanks or sha
• Nikki commented on Complaining About Complaining Sometimes a friend of mine will start to tell me of his or her physical afflictions or how they are
• Nikki commented on Complaining About Complaining Thanks for writing and posting this. When we are in heaven, Lauren, you and I 'will run and not

Related posts:

1. Fear Fear and OCD are a bad combination. It's bad enough to have a fearful thought...
2. Patience in the Hospital Though I am a Novel Patient, patience isn't my strong suit.  But patience is what...
3. My Illness By The Numbers 17 The number of diagnoses I've accumulated so far... Sjogren's Syndrome, Autoimmune Pancreatitis, Autoimmune Hepatitis,...

I hoped for the best, but prepared for the worst, and unfortunately the worst won out this time.

I’m back in the hospital again.

I woke up Thursday morning feeling pretty horrible.  Fever, chills, dizziness, and worsening kidney pain.  After three days of oral antibiotics, my kidney infection was getting worse not better.  I called my doctor who agreed it was time to head to the hospital.

By the time I got the ER, fever, pain and dehydration had conspired to give me tachycardia (racing heart rate).  I suppose one of the upsides of being really sick is being seen right away.  Despite the crowded waiting room, they found me a bed in the ER straight from triage.

They ran some tests.  Not surprisingly my white blood cell count was way up due to infection.  The ER doctor quickly explained that though they send home 95% of patients with kidney infections, there were multiple reasons he felt I needed to be admitted.  I’m immunosupressed from all the Prednsione I’m on, I have multiple chronic illnesses, the oral antibiotics at home didn’t work, and so on.

So I was admitted.

I received two different IV antibiotics over the next several days.  My veins weren’t happy about it and I went through 6 IVs in as many days.  But overall my stay has been uneventful.  Mostly I’ve been too tired to do anything but sleep.

I had several visitors who helped break up the monotony.  My mom and dad spent the most time here with me.  Sunday I was pleasantly surprised by a visit from two friends from church, Liz and Halee.  Then yesterday an old friend from high school Jenny paid me a visit followed by Christy and Brad from church.

I’ve been waiting this morning to find out the results of my latest tests and was just told they are good to go.  I’ve been discharged!  Yay!

I will go home with oral antibiotics which I will stay on long term to hopefully prevent yet another one of these kidney infections I seem so prone to getting.  It’s getting old – ending up in the hospital every few months from these things.  I’m hoping that these long term antibiotics will do the trick and keep me out of the hospital.

Recent Comments:

• NovelPatient commented on The Unexpected I'll check it out thanks! Hope all is well with you!
• sandie commented on The Unexpected http://www.thecodeoflife.info/pages/The%20Code%20…. I don't know yet if this has any merit. I
• NovelPatient commented on A Place For Him Thanks!
• Alison commented on A Place For Him Not bad for ten minutes! The Dog looks so cute.
• Genko commented on Shattered Trust Hi Lauren: Sorry this has been an additional stress for you. I think it must be almost impossible fo

© Novel Patient for Novel Patient, 2010. | Permalink | One comment | Add to del.icio.us
Post tags: Antibiotic, antibiotics, Better, blood cell count, Chronic, Chronic Illness, chronic illnesses, Church, Conditions and Diseases, dad, dehydration, doctor, ER, fever, fever chills, Genitourinary Disorders, heart rate, help, hope, hospital, illness, illnesses, infection, ivs, Kidney, kidney infection, kidney infections, kidney pain, Medicine, mom, mom and dad, oral antibiotics, pain, patient, racing heart, sleep, tachycardia, triage, waiting, waiting room, white blood cell, white blood cell count

Image by Stewf via Flickr

17

The number of diagnoses I’ve accumulated so far… Sjogren’s Syndrome, Autoimmune Pancreatitis, Autoimmune Hepatitis, Hashimoto’s Thyroiditis, Cerebritis, Neuropathy, Autonomic Dysfunction, Fibromyalgia, Raynaud’s, Erythromelagia, IgA Deficiency, Asthma, Sleep Apnea, OCD, Depression, Anxiety, and ADD.

7

The number of years it took to be diagnosed with Sjogren’s Syndrome.

26

The number of years I’ve been living on this earth.

28

The number of medications I take

150

The number of pounds I’ve gained from Prednisone.

30

The number of pounds I’ve lost recently.

3

The number of pants sizes I’ve dropped recently.

8

My pain level right now.

17

How old I was when I when I last felt at all healthy.

3

The number of surgeries I’ve had… appendix removed, gallbladder removed, bladder stimulator implanted.

2

The number of doctors appointments I have next week.

13

The number of doctors I see on a regular basis.

0

The number of days I’m without pain.

Recent Comments:

• Shalunya commented on Patience in the Hospital I am blessed that recently I have found myself on the light side of the hospital bed. So I will send
• Ariana commented on Patience in the Hospital Hoping my visit will help with the monotony tonight!!!
• Jeanne commented on Sjogren’s Syndrome Awareness Month Lauren, Thank you for this informative post about Sjogren’s Syndrome. I am so sorry you are still in
• Rachel commented on Ladylike: Feeling Feminine in the Hospital Loved the shampoo caps for my first hospital stay. Helped me feel fresher and cleaner than the brief
• maureen commented on Ladylike: Feeling Feminine in the Hospital Love your blog….so pretty! First time I’m here, but I will be back. Love those hospital gowns you

© Novel Patient for Novel Patient, 2010. | Permalink | 3 comments | Add to del.icio.us
Post tags: ADD, anxiety, appendix, Appointment, appointments, asthma, autoimmune, autoimmune hepatitis, autoimmune pancreatitis, Autonomic, autonomic dysfunction, blog, Cerebritis, Conditions and Diseases, depression, depression anxiety, doctor, Doctors, Dysfunction, erythromelagia, fibromyalgia, flickr, gallbladder, Hashimoto, Hashimoto's thyroiditis, health, iga deficiency, illness, Medication, medications, Numb, number, OCD, pain, Prednisone, raynaud, sjogren, sjogren's syndrome, sleep, sleep apnea, stimulator, surgeries, Syndrome, thyroiditis, week

Appearances can be deceiving with a chronic illness.  Looking at a person you usually can’t even begin to see what they are going through.  Sometimes even your doctor can’t see what’s right in front of them.  Sometimes you have to spell it out for them.  Especially when you have a lot of symptoms and medical problems, I’ve found it extremely helpful to bring your doctor a printed list summarizing your medical history and list of symptoms broken down by category.

This serves another purpose as well.  When you have an unexpected and most unwelcome flare of autoimmune pancreatitis pain, you can distract yourself by making it into art while you wait for your pain meds to kick in!

Head over to Wordle to try it out for yourself (and feel free to link me in the comments).

Recent Comments:

• alan m rogers commented on Walk By Faith Fantastic and amazing. I was baptized (in a hot tub, no less!) just over two years ago. I have fibro
• Jen Fryer commented on Walk By Faith What wonderful news. I cannot tell you how happy I am for you.
• Alison commented on Walk By Faith I know it can be hard to talk about your faith in this kind of forum, but I’m glad you did! The best
• Annette commented on Walking: The Power of Positivity and Prayer I heard about the insanely slow taper from someone else, and she had the most success of anyone in a
• stephanie commented on Walking: The Power of Positivity and Prayer That is wonderful! Keep up the great work. Stephanie

© Novel Patient for Novel Patient, 2009. | Permalink | One comment | Add to del.icio.us
Post tags: Allergies, anxiety, Appendectomy, art, autoimmmune, autoimmune, autoimmune hepatitis, autoimmune pancreatitis, Cholecystectomy, Chronic, Chronic Illness, concentration, Costochondritis, depression, distraction, Erythomyalgia, Fatigue, fever, fibromyalgia, flare, Hashimoto, hospitalization, Hospitalizations, Hospitalized, iga deficiency, illness, intolerance, involuntary muscle, kidney infection, medical history, medical problems, meds, memory problems, muscle weakness, numbness, obsessive compulsive disorder, Osteopenia, pain, pancreatitis, pupils, seizures, severe pain, sjogren, sleep, sleep apnea, stomach pain, symptom, symptom list, tag cloud, tremor, wheelchair, word cloud

“How would you rate your pain on a scale of 1-10?”

I detest this question.  But I get asked it all the time from my doctors.  How can you apply a pain scale to chronic pain?  I don’t even remember what no pain feels like.  So the whole scale seems to shift.  Pain is so relative.  I have gotten used to being in pain all the time.  I’ve gotten used to the constant stomach pain from the Autoimmune Pancreatitis and the debilitating joint pain that keeps in the wheelchair.  Not something you want to get used to.  But it’s amazing how much I can even take my normal level of pain for granted.

The last 3 days I was without my pain medication due to a major pharmacy mess up coupled with a significant insurance snag.  My stomach hurt and my joints seemed to be screaming with pain.  In more pain, I was more drained, more cranky, more emotional.  I couldn’t sleep well.  I’m yawning even now from the last few nights of poor sleep.  But strange thing was, I didn’t let myself realize how much pain I was really in until it was over… after I finally got my pain meds today again.

The sudden relief from pain was dramatic.  It’s amazing what you can live with when you have no choice, but I won’t be taking my “normal” level of pain for granted so quickly again.

Recent Comments:

• sally in norfolk commented on De-Stress Thankfully i dont have much stress in my life at the moment but when i did i de-stressed by going ru
• Gilly commented on De-Stress I de-stress by spending time online, mostly with my support group members and chatting with friends,
• amanda commented on De-Stress You r a great friend for being there all those times . I do a lot of writing or actually chatting
• 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

© Novel Patient for Novel Patient, 2009. | Permalink | 4 comments | Add to del.icio.us
Post tags: autoimmune, autoimmune pancreatitis, Chronic, chronic pain, Insurance, joint pain, joints, Medication, meds, pain medication, pain scale, pharmacy, relief from pain, sleep, stomach pain, wheelchair