I’ve been home from the hospital for 45 days today I just realized, and I somehow managed to not blog once this whole time!  I feel terrible, and I hope I haven’t worried anyone!  But I’ve been very busy recovering and living my life.  A novel thing!

I’ve made tremendous progress the last 45 days!  I’ve gone from having a feeding tube to clear liquids to solids to totally normal food.  I started out practically confined to bed, but now I’ve been going out and walking around with my walker again.  I even got my PICC line out last week!  Things are looking up!

And since I’ve been feeling so much better, I’ve been able to enjoy a social life again for the first time in a long time.  It can be really hard to make friends when you debilitated with a chronic illness.  I’ve had very little to no social life for years.  Partly due to pain and lack of energy but also due to lack of friends.  But when I was Baptized back in March into The Church of Jesus Christ of Latter Day Saints, little did I know that I would suddenly find myself with as much social life as I had the energy to keep up with.  It’s been a great blessing!

In fact, I’m feeling so much better that I’m actually leaving to go out of town on Wednesday to ARGFest – a conference for the kind of online games I develop and play.  I will be going for 5 days, and I will be taking my caregiver with me to help me out.  I am super excited and thankful that I am well enough to go!

Now that’s what I call progress!

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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Post tags: ARGFest, Baptized, blessing, blog, Busy, caregiver, Christianity, Chronic, Chronic Illness, Church, church of jesus christ, church of jesus christ of latter day saints, clear liquids, Conference, energy, feeding tube, games, hope, hospital, illness, jesus christ of latter day saints, Latter Day Saints, LDS, life, living my life, pain, patient, picc line, Religion and Spirituality, walk, walker, WALKING

I’ve been home from the hospital for 45 days today I just realized, and I somehow managed to not blog once this whole time!  I feel terrible, and I hope I haven’t worried anyone!  But I’ve been very busy recovering and living my life.  A novel thing!

I’ve made tremendous progress the last 45 days!  I’ve gone from having a feeding tube to clear liquids to solids to totally normal food.  I started out practically confined to bed, but now I’ve been going out and walking around with my walker again.  I even got my PICC line out last week!  Things are looking up!

And since I’ve been feeling so much better, I’ve been able to enjoy a social life again for the first time in a long time.  It can be really hard to make friends when you debilitated with a chronic illness.  I’ve had very little to no social life for years.  Partly due to pain and lack of energy but also due to lack of friends.  But when I was Baptized back in March into The Church of Jesus Christ of Latter Day Saints, little did I know that I would suddenly find myself with as much social life as I had the energy to keep up with.  It’s been a great blessing!

In fact, I’m feeling so much better that I’m actually leaving to go out of town on Wednesday to ARGFest – a conference for the kind of online games I develop and play.  I will be going for 5 days, and I will be taking my caregiver with me to help me out.  I am super excited and thankful that I am well enough to go!

Now that’s what I call progress!

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

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Post tags: ARGFest, Baptized, blessing, blog, Busy, caregiver, Christianity, Chronic, Chronic Illness, Church, church of jesus christ, church of jesus christ of latter day saints, clear liquids, Conference, energy, feeding tube, games, hope, hospital, illness, jesus christ of latter day saints, Latter Day Saints, LDS, life, living my life, pain, patient, picc line, Religion and Spirituality, walk, walker, WALKING

As the month draws to a close, I am reminded that April is Sjogren’s Syndrome Awareness Month.  Sjogren’s is my primary diagnosis, the overarching disease process that ties all (or most) or my symptoms together.

But what is Sjogren’s Syndrome?  According to Sjogrens.org:

Sjögren’s syndrome is a chronic autoimmune disease in which people’s white blood cells attack their moisture-producing glands. Today, as many as four million Americans are living with this disease.

Although the hallmark symptoms are dry eyes and dry mouth, Sjögren’s may also cause dysfunction of other organs such as the kidneys, gastrointestinal system, blood vessels, lungs, liver, pancreas, and the central nervous system. Patients may also experience extreme fatigue and joint pain and have a higher risk of developing lymphoma.

With upwards of 4,000,000 Americans suffering from Sjögren’s syndrome, it is one of the most prevalent autoimmune disorders. Nine out of 10 patients are women.

To make it more personal…

• Imagine you can’t eat crackers because you don’t have enough saliva to swallow them.
• Imagine you are so dry that it hurts to use tampons.
• Imagine your eyes are too dry and painful to wear contacts.
• Imagine you need to take 29 medications to keep your illness under control.
• Imagine the disease effects your central nervous system and causes difficulty concentrating and remembering things.  Imagine it sometimes even causes vertigo, seizures, numbness, facial drooping, and episodes of paralysis.
• Imagine the disease has spread to your pancreas in the form of autoimmune pancreatitis causing severe pain and making it difficult to digest food without the help of medications and sometimes a feeding tube.
• Imagine the disease causes such severe joint pain you are confined to a wheelchair for over a year and now use a walker to stand and walk.
• Imagine you are hospitalized several times a year for up to six weeks at a time.
• Imagine you have Sjogren’s Syndrome.

There are so many facets to it this doesn’t even begin to cover how Sjogren’s Syndrome affects me, but I hope this provides a glimpse into my world.

For more information see my post from last year on Sjogren’s Syndrome Awareness Month or visit Sjogrens.org.

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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Relationships are complicated enough, but adding chronic illnesses into the mix increases complications exponentially.  In fact, being bitten by the love bug leads to all sorts of symptoms, side effects, and potential complications.

It’s been a long time since I’ve let myself like a guy.  So imagine my surprise to find myself with a good old fashioned crush on someone.  But I have all the symptoms of a crush.  Fluttering in my chest.  Racing heart.  Warmth in my cheeks.  Funny feeling in the pit of my stomach when I think about if he might like me back.  But it’s also brought up a lot of confused feelings – some not so pleasant.

I feel so inadequate because of my illness.  Why would he want me when he could have countless girls who are whole and healthy?

Dating me would mean dealing with all my limitations that even I don’t want to deal with – side effects if you will.  It would begin with setting the date pending me feeling up to attending.  Not being able to keep plans because of my illness has caused problems even with my closest friends.  Breaking a date wouldn’t exactly be the way I’d want to start a new relationship, but the possibility is a reality that would come with dating me.  Then when he’d pick me up we’d have to lug my wheelchair or walker on the date.  The first thing I want to explain to him would hardly be how to assemble my wheelchair.  At dinner he’d get a full education on my eating difficulties as I filled the waiter in on my food allergies and took pills with dinner that would allow me to digest my food.  Sounds like a pretty mortifying first date in all honesty.

I worry that I wouldn’t be able to do his favorite activities with who ever I date.  I can’t even do my favorite activities anymore.  I can’t go hiking or horseback riding or play tennis.  What if physical activities are an important part if his life?  How would I ever share that with him?

And then there’s the issue of feeling inadequate due to my appearance.  I’ve put on 150 pounds from being on steroids (Prednisone) to control my autoimmune diseases.  Though I’ve now lost a small portion of it, I still feel so physically unattractive.  Not to mention the horrible acne and hair growing in strange places the same medication has also caused.  I so desperately want to be thin again and have clear skin again if only so I will be physically appealing to guys again.

Then if things do work out after the initial shock of dating someone with chronic illnesses, there’s still all the complications that can arise down the road.  What if he gets tired of dealing with the day to day struggle of my illness?  If we someday get serious and get married, the reality is that having children and even sex itself can be difficult with a chronic and painful illness.  If we did have children, would I even have the energy to raise them?

I know.  I know.  Now I’m getting way ahead of myself.  But I don’t really know what else to say.  It feels like nothing I can say will explain how horribly inadequate my illness makes me feel.  I barely have the energy to be a good friend sometimes let alone a good girlfriend.

I hope that someday I find someone who can look past my illness and see me.  But until then I can’t help wishing that the love bug didn’t even bite me in the first place.

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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Post tags: acne, Allergies, art, autoimmune, autoimmune disease, autoimmune diseases, Chronic, Chronic Illness, chronic illnesses, complication, Conditions and Diseases, dinner, disease, Diseases, Education, exponentially, feelings, first date, food allergies, funny feeling, health, help, hope, horseback riding, illness, illnesses, life, long time, Medication, pain, pills, place, Prednisone, racing heart, relationship, relationships, road, share, steroid, struggle, symptom, tennis, walk, walker, wheelchair

Before the wheelchair and the Prednisone, I could hide my illness in plain sight.  This is me right after a hospitalization.

Before I was in a wheelchair and now a walker, my illness was pretty invisible.  Though there are many downsides to invisible illness, one thing I did appreciate was that it gave me a choice of how much I wanted to share if anything about my illness.  If I wanted, I could mostly hide my symptoms, and no one had to know.  But my wheelchair became a physical sign of my illness and suddenly everyone, everywhere I went, instantly knew something was wrong.  And the big question that lingered in the air was “WHAT?”

I have always been a very open person.  Though like everyone I want to be accepted, I really don’t fear rejection.  Or at least I’d rather be rejected up front by someone I just met than a close friend far down the line.  So my policy about my illness has always been to share as much as the person I’m talking to in curious to know.  And the interesting thing has been that this has brought many blessings in itself.  When I share about my illness honestly and openly, I generally find that people respond with genuine empathy.

Sharing so openly has also given me the opportunity to help many people.  There are so many people out there going through similar experiences to me themselves or have a loved one or friend who is going through something similar.  I find that when I follow my intuition and share I find I’m speaking to someone who can benefit from what I have to say.

People are usually dying to ask me why I’m in a wheelchair or using a walker, but are afraid of being rude.  So I’ll steer the conversation that direction and put them out of their misery.  In this fashion, I often find myself sharing about my various illnesses with people I just met.  Sometimes I share the story of my physical illness and sometimes I share my struggle with mental illness.

Sometimes sharing doesn’t go very well.  Though most people are supportive and understanding, there will always be the ones who are judgmental or want to tell me what to do.  Either way I never regret sharing about my illnesses.

I find it’s important though that when I talk about myself, my illnesses aren’t the only thing I share about.  I am not my illness, and if I can communicate one thing that sticks with the person I am talking to I hope it is that people like me with chronic illness are so much more than the sum of their diagnoses.  I am also a women with hopes and dreams, talents and aspirations, fears and weaknesses.  I am human just like everyone else.  I am a graphic designer and a game designer and a novelist and a blogger and a scrapbooker.

I hope I never lose my desire to share fully and genuinely, and that I never forget to share the most important thing of all – what makes me who I am.

Recent Comments:

• Bruce commented on Seeing Double [...] Novel Patient shares thoughts on facing life’s difficulties and how to keep a positive attitud
• Maz commented on Hospital Update Just wanted you to know that I am really hoping this procedure lets the pancreas rest & recover.
• Mela commented on Seeing Double big hugs from me, Lauren! I can’t imagine how much courage it takes for you every day to maintain su
• Th. commented on Seeing Double . Good luck!
• Annie commented on Hospital Update I hope the feeding tube goes well – you are in my thoughts times 110! Annie

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Post tags: blessing, blog, blogger, Chronic, Chronic Illness, Conditions and Diseases, conversation, Disclosure, empathy, experiences, fashion, Fear, fear rejection, game, game designer, health, help, hope, hospital, hospitalization, illness, illnesses, intuition, invisible illness, many blessings, Mental disorder, mental health, Mental Illness, misery, novel, open person, opportunity, patient, physical illness, Prednisone, question, rejection, scrapbooker, share, sharing, story, struggle, symptom, understanding, walk, walker, wheelchair

Check out this video of me WALKING!  It has truly been a miraculous recovery process!

Recent Comments:

• 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
• Annie commented on Ladylike: Feeling Feminine in the Hospital These are great tips!! I’m sorry you are in the hospital! You should come visit me some time at It’s
• Shalunya commented on Ladylike: Feeling Feminine in the Hospital Great tips!! I swore I would never let some nurse sponge bathe me. But a day after having brain surg

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Post tags: disabilities, health, miraculous recovery, Recovery, recovery process, rehabilitation, video, walk, WALKING