Novel Patient Community

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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© Novel Patient for Novel Patient, 2010. | Permalink | 7 comments | Add to del.icio.us
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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© Novel Patient for Novel Patient, 2010. | Permalink | No comment | Add to del.icio.us
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

Having a chronic illness can rob you of your independence.  Suddenly you find yourself dependent on other people to do basic things you had always taken for granted, and this changes your relationships forever.

Before I got sick I was a super independent person.  I always preferred to do things on my own and avoided asking for help even when I really needed it.  With the onset of my autoimmune diseases, especially the neurological symptoms and symptoms that limited my mobility, asking for help became an unavoidable way of life.

Now I need help with even basic things like getting dressed or washing my hair – things I have done on my own for most of my life.  Those were the hardest things to ask for and accept help with at first.  It was frustrating for me and it was frustrating for my mom who initially found herself as my only caregiver.  Suddenly she was caring for me in a way she hadn’t needed to since I was a small child.  It tested our relationship.

At the time I felt very hurt at her frustration.  I wondered why she didn’t just automatically understand how much I had to humble myself to even ask for help in the first place.  It hurt when she responded with questions about whether I really needed the help or if I was feeling as badly as I was saying.  We fought a lot at a time when I really just needed her support.  Eventually I came to understand that I was failing to communicate.  I was also blinded by my own experience.  I was so caught up in dealing with the implications of a chronic illness and how it had shaken my world that I failed to see how profoundly it was affecting her as well.

But when I started to communicate this to her – that I knew how hard this was for her too  and that I appreciated all she was giving up to take care of me and that I knew it was also hard to watch her daughter get sick – the fighting tapered off.  I also found new ways to help her in return  that I could still do – mostly various types of computer and technical help.

When my mom simply couldn’t do it alone anymore, my need for help blessed me with two beautiful friendships in the form of two wonderful caregivers.  Sarina, my first caregiver, is more than a friend to me.  Born exactly one year apart, we say we are twins separated by a year at birth.  But it was odd at first having someone – a stranger – my age helping me with the very personal things I needed help with especially since I had been abandoned by several of my closest friends over the prior year.  They simply didn’t want deal with my new found illness and subsequent dependency.  Some stopped being my friend because they didn’t even believe I was actually sick and some of them just found it too much to handle and some I will never know their reasons.  In any case it hurt.  A lot.  But Sarina came in and loved me and accepted me and my illness.  She was truly a blessing and still is.

After Sarina moved away to further her career and get married, Melissa, my current caregiver, came into my life.  She is an angel in my life.  She, like Sarina, is always there for me.  We laugh a lot.  And through both of them I found that though I was sick I could still be a good friend in return.  I could still listen and be there for people.  I didn’t just need help from them, I could give it in return.

But at the end of the day I am still dependent on other people.  And I still hate that.  I don’t think I’ll ever not hate watching my mom or Melissa assemble my back backbreakingly heavy wheelchair.  I hate that I can’t just do it myself.  Though in a lot of ways, my relationships have grown and been strengthened by my need for help, and for that I am grateful, I am still eager to find ways to lessen my dependency.

So I am VERY pleased to announce that I’ve taken a step in the right direction – nine of them.  Last week  I walked (with the help of my walker) nine steps.  It was the first time I’ve walked in over a year!  I was having a low pain day and just went for it.  It was incredibly painful but even more incredibly worth it!

This post is my entry in February’s Health Activist Blog Carnival. If you’re interested in participating too, you can read all about it HERE.

Recent Comments:

• 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
• Alison commented on Fear a little cry once in a while doesn’t hurt anything
• Sandra Lee commented on Fear My heart is with you! May you pull through without all the “what ifs” happening.
• amanda commented on Fear Girl you know the Lord is watching over you and you will be fine *hugs* love you <3
• Jeanne commented on Full Disclosure Hi Lauren, This is a great post. The vast majority of my 28 years (out of 41) living with chronic il

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© Novel Patient for Novel Patient, 2010. | Permalink | 6 comments | Add to del.icio.us
Post tags: autoimmune, autoimmune disease, autoimmune diseases, blog, caregiver, Chronic, Chronic Illness, disease, Diseases, friendship, frustration, health, illness, independent person, life, melissa, mom, neurological symptoms, new ways, pain, patient, relationship, relationships, Sarina, symptom, wheelchair

Tonight I wheelchair danced.

But that’s not where this story starts.

Once upon a time, I was afraid of dancing.  In fact, for most of my life I was afraid of dancing.  I never was super coordinated and I certainly lacked natural rhythm.  I was convinced I couldn’t dance and that I looked stupid trying.

Later, when I was old enough to have a few drinks first, I could get up the courage to dance a bit.  And when over a year ago now I ended up in a wheelchair, dancing seemed to be out of the cards forever.

But the world works in mysterious ways.  And someone named Jane McGonigal came into my life and with her eventually came her invention Top Secret Dance Off.  She and her games have changed my life for the better in innumerable ways and she has truly been a blessing to me, so when I heard about Top Secret Dance Off or TSDO I knew I had to be a part of it.

However, the way you participated in TSDO was by donning a disguise and submitting your video of you dancing to one of the dance challenges.  But I was in a wheelchair.  I could barely dance before.  How could I now?  But I am not so easily dissuaded from something I am determined to do.  So timid at first I made my first and then second video featuring Finger Dancing!

But then I began to joke to my fellow TSDO players that I would wow them with a wheelchair ballet.  Their response to the idea was so positive that I decided that it was something I had to do.  So I recruited my best friend and caregiver at the time Sarina (a real former ballerina) to help me.  The result wasn’t something either of us expected and the response to the video blew me away.  People laughed and cried and were moved and inspired.

For my wheelchair ballet video I won a mask.  The only condition of accepting the new mask as a reward was I had to make a video of me putting on the mask for the first time and dance whatever dance came out using a dance move known as “the solar eclipse” which I was told started in the elbows.  To this day I’m not sure what happened to me when I put on the mask, but my fear of dancing was conquered!  See for yourself…

So tonight I am unmasking myself to all of you because tonight while out to dinner and dancing with my dad and his girl friend I wheelchair danced without any mask at all and I didn’t have to think twice about it.  And although I didn’t see it myself, my dad said when I powered on my wheelchair to spin around on the dance floor, the people behind me watching applauded and cheered.

It occurs to me that the world is full of little miracles and hidden blessings like this.  Because without a wheelchair and Jane and TSDO I may have never challenged myself to get over my fear of dancing at all.

Recent Comments:

• Robby commented on Walk By Faith I’m so glad to hear you sounding so happy. It’s tough sometimes to live according to God’s will, but
• Debbie commented on Walk By Faith I found you through Twitter, and I just wanted to thank you for sharing your story. I barely know yo
• Genko commented on Box of Hope Hi Lauren: I’ve been reading your blog to see how you are getting along and particularly appreciated
• Diana commented on Box of Hope What a beautiful post. I haven’t done this, but I’m thinking I should. Those dark times can be very
• Alison commented on Box of Hope So great. I wish I had a box of hope right now. So tired though. Might have to settle for a list of

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© Novel Patient for Novel Patient, 2010. | Permalink | 6 comments | Add to del.icio.us
Post tags: art, ballerina, ballet, best friend, blessing, caregiver, challenges, courage, dad, Dance, dance move, dinner, disguise, drinks, Fear, games, Jane, jane mcgonigal, life, mask, mysterious ways, natural rhythm, response, Sarina, ssi, story, top secret dance off, TSDO, video, wheelchair

When you are sick all the time you often have to (sometimes unwilling) rely on the help and support of other people.  And that is something that should not be taken for granted.  So today, on the one year anniversary of this blog, I feel like I really have to thank all of you who have joined me in my journey as a novel patient.  During the ups and downs of this last year, your comments and support have been such a source of strength for me to draw upon.  And this blog has come a long long way since my first post.  Not only has its readership grown, but its pushed me to improve as a writer.  It’s even spawned the Novel Patient Community where every novel patient can have their own blog.

Though it has been a rough year in many ways, I am thankful for so many things.  I am thankful for a mom who not only lets me, her 26 year old daughter, live with her, but helps take care of me.  I am thankful for a dad who cares so much for me that he will always try and do what he thinks is best for me.  I am grateful for a caregiver who I also consider a close friend and a also for a best friend who I know will always be there for me when I need her.  I am thankful for a wonderfully supportive sister.  I am thankful for a cuddly dog that adores me.

I am also thankful for my doctors who have often gone out of their way to make sure I get the care I need.  I know I am a very complicated case to have to deal with.  This year I decided to make the five of my doctor’s I see the most handmade holiday cards to let them know how much I appreciate what they do for me.

Recent Comments:

• Dad commented on Walk By Faith Beautiful day to share with you… Love, Dad P.S. I really do have more hair than the picture shows!
• 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

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© Novel Patient for Novel Patient, 2009. | Permalink | One comment | Add to del.icio.us
Post tags: best friend, blog, caregiver, dad, doctor, Doctors, dog, holiday cards, journey, mom, novel, patient, patient community, readership, thanksgiving, ups and downs, year anniversary

On Friday I turned 26 years old!  And I really had something to celebrate!  The night before I got a call from my doctor letting me know that the lab tests were a mistake and I don’t have a blood disorder!  I was so relieved I almost cried.  So on Friday I was able to celebrate my birthday worry free!

Even being able to celebrate my birthday not in the hospital is something I’m grateful for as I spent my 24th birthday in the hospital and my 25th birthday recovering from just getting out of the hospital.

So this year I celebrated by giving myself a much needed pampering.  My mom and Melissa (my caregiver) joined me in getting our hair cut and colored.  I dyed my hair red with brighter red and golden highlights.  Then we went out for a birthday lunch at one of my favorite restaurants in the mall.  Afterward we went to Bare Essentials and got our make up done.  Then we went shopping for a while and Melissa bought me my birthday present – a new pair a jeans that actually are small enough to fit (another thing to celebrate – weight loss).  Finally we got all dressed up and went out for a nice birthday dinner!

When living with a chronic illness it can seem like its one bad thing after another.  So it’s especially nice to have something to celebrate for a change!

Recent Comments:

• Marti commented on Keeping The Faith I am SO happy for you Belle! What a splendid development indeed. I can see the joy already and you k
• amanda commented on Keeping The Faith This is wonderful! You never cease to amaze me! I hope my faith can one day be as strong as yours! L
• Alison commented on Keeping The Faith I love how honest this is. It’s hard to talk about faith. I never knew what to think when it came to
• Mela Eckenfels commented on Freedom Drive Hey, I would like to donate some bucks for your dream of mobility, but giveforward.org is a failure
• Kim commented on Wheelchair Dance That was fantastic!!!!!!!!!! First, my fingers were goin’ on the keyboard – I challenge anyone to lo

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© Novel Patient for Novel Patient, 2009. | Permalink | 5 comments | Add to del.icio.us
Post tags: 26th birthday, bare essentials, birthday dinner, birthday lunch, blood disorder, Candle, caregiver, Celebrate, Chronic Illness, hospital, illness, jeans, lab tests, melissa, mom, restaurants, weight, weight loss

Sometimes in the face of adversity you just have to stand tall.

My doctor woke me up on Sunday morning to tell me that I may have a blood disorder – Polycythemia. Unless there’s been a mistake either with the lab or the blood draw itself, I am making too many red blood cells and my iron is much too high. He was hesitant to tell me what might be causing it, but if the repeat test I got today still comes back high he wants me to go see a Hematologist. I looked it up myself and the possibilities of the causes are rather frightening… ranging from cancer to a terminal illness to kidney disease.  Needless to say I’ve been feeling rather anxious about it.

In addition, I’ve started tapering my Prednisone dose again post face drooping.  My neurological symptoms of my brain inflammation have been coming right back.  My tremor especially has been so bad I am having trouble doing simple tasks.  It’s so frustrating I just want to cry.

So this evening talking to Melissa, my caregiver, about it I broke down.  I’m so tired of it being one thing after another!  It’s two steps forward one three steps back.  So I decided to take a stand.  Literally.  I wanted to see how long if at all I could bare the joint pain I get while standing.

We turned my wheelchair around so I could use the back of it to hold myself up, and Melissa sat in the chair to help weigh it down so it wouldn’t tip.  Trembling I slowly pulled myself to my feet.  It was agony.  But I shifted my weight until I found a bearable “sweet spot”.  And then I stood there for a over a minute!

It was excruciating and exhausting.  I needed to lay down afterward and take some extra pain medication.  But the victory was well worth it!  I stood for longer than I’ve been able to in over a year! I showed my illness who is boss!

I still have high hopes that the Sjogren’s specialist I’m seeing on November 9th will have some new treatment options for me that will significantly help my joint pain and neurological symptoms.  But in the meantime, I will continue to take a stand against my illness.

Recent Comments:

• Mela Eckenfels commented on Freedom Drive Hey, I would like to donate some bucks for your dream of mobility, but giveforward.org is a failure
• Kim commented on Wheelchair Dance That was fantastic!!!!!!!!!! First, my fingers were goin’ on the keyboard – I challenge anyone to lo
• Alison commented on Wheelchair Dance What an great blog! I used to dance to that song (turn around) alone in my room in 7th grade. And yo
• WackyLisa commented on Wheelchair Dance You’ve reminded me of how much fun I had at a workshop put on by AXIS Dance during college. I don’t
• Heather commented on Wheelchair Dance That’s SO awesome!! I love it! Have you seen the Glee episodes with the wheelchair dancing? You’d ge

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© Novel Patient for Novel Patient, 2009. | Permalink | 4 comments | Add to del.icio.us
Post tags: adversity, agony, blood disorder, brain inflammation, caregiver, disease, doctor, hematologist, high hopes, hope, illness, joint pain, Medication, Medicine, neurological symptoms, pain, pain medication, Polycythemia, Prednisone, red blood cells, sjogren, sweet spot, symptom, terminal illness, treatment, treatment options, tremor, weight, wheelchair

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

Sometimes things come crashing down emotionally.  I didn’t realize what an emotional toll being so ill in the hospital with a double kidney infection had until yesterday.  I didn’t let myself feel it in the midst of the crisis.  I guess I was in survival mode.  Literally.

But yesterday gave me a chance to reflect on it.  I was at my regular monthly appointment with my psychiatrist (who I absolutely adore), and he was asking me the normal questions about my physical health as it affects my mental health and everything just sort of hit me.  And I started to cry.  All the stress I had been burrying so I could make it through the hosptial stay and infection and 10 days of at home IV antibiotics came bubbling up to the surface.  I didn’t shed many tears because my illness, Sjogren’s Syndrome, damages my tear production… among other things.  And that made me cry harder.

And then finally dealing with my immediate past made me think about my immediate and not so immediate future.  And I cried because the future is so unknown and that is just plain scary.  This round of IV immunospupressants – Rituxan – doesn’t seem to have worked.  That is enough to make me cry in itself.  It is just so disappointing.  I am unsure what I should do next?  Should I risk suppressing my immune system further and more potentially dangerous infections like the one I’m just recovering from and get another round?  Will it even work?  Should I try something even stronger?  Or should I not take the risk and learn to accept my life as it is.  Is my new “normal” getting around in a wheelchair and being in pain and exhausted all the time with dibilitating and life threatening symptoms?  Is that how I’m going to be forever?  If this is how I am at 25, what will my life be like at 50?  Will I ever be independent again?  Will I need a caregiver forever?  And the scariest of all… how long is forever if I continue to be this sick?  Will I die from my autoimmune diseases and not with it?

But after crying this out of my system I realized I need a “new look” on many levels.  I can’t LIVE my life if I’m thinking this way all the time, so I don’t.  But I did need to get it out of my system once and a while.  The rest of the time I am thankful for what I still do have.  I am usually happy.  I have a wonderful caregiver in whom I’ve found a great friend as well.  I have the most wonderful and supportive community of online friends a girl could ask for.  I have a sister who does everything she’s able to support me.  A dog who loves give me cuddle therapy.  My writing, creativity, faith in myself, and most importantly HOPE!

I also got myself a “new look” in a more literal sense.  A new haircut and a new outfit.

Recent Comments:

• 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
• Orphanus commented on My Own Advocate I wish I had something more enlightening to say than “amen sister”. I guess I’ll go with a simple “I
• J commented on Pain Scale My understanding is that the pain scale is *meant* for acute pain. It has been transferred to chroni
• Michelle commented on Pain Scale Well said..
• 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:

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© Novel Patient for Novel Patient, 2009. | Permalink | 4 comments | Add to del.icio.us
Post tags: antibiotics, autoimmune, autoimmune diseases, caregiver, dangerous infections, emotional toll, faith, health, hospital, illness, immune system, kidney infection, mental health, new haircut, pain, risk, sjogren, stress, survival mode, wheelchair

As I round out a total of TWO weeks spent in the hospital with this kidney infection nonsense, I thought I’d take a moment to share how I’ve kept myself from going insane with boredom.

1. My first line of defense is and will always be the computer/internet.  Chatting on IRC, AIM, gtalk, YIM, etc with my friends is the best way to spend hours and hours AND not feel lonely at the same time!  The best part is my friends live all over the world, so usually at least one of them is always available if I need to vent or just want to chat.

2. There is nothing like a good book.  Reading has always been a favorite past time of mine.  I’ve been immersed in the Dune series during this hospitalization.  Getting wrapped up in a good book lets me forget my own troubles for a while and be someone else and somewhere else.  When I finish Dune, I plan to read my first ebook on my iphone!

3. And now for some mindless entertainment… Computer games!  I love playing little free flash games especially of the point-and-click and escape variety found in vast quantities on sites like Jay Is Games and LazyLaces.  But I was feeling the need for something a little bit more hard core, so I installed Fable on my latptop and have been playing that when I’ve been bored.

4. Visitors are the best!  When you are in the hospital nothing can replace human contact.  It quickly becomes very lonely in those isolating hosptial rooms.  My mom, dad, sister, and caregiver Melissa have been here most days to keep me company.  Their presense has been a huge comfort and I am very grateful!  Also the hospital has volunteers who sometimes come around and talk to you.  I spent a half hour with a very nice volunteer the other day.  It was really nice to have someone new to talk to.

5. Yesterday Melissa lugged a TON of my scrapbooking stuff to the hospital so I could partake in my VERY favorite activity!  It’s so nice to be creative!  I was exhausted by the time I finished just two pages (even with lots of breaks), but it was well worth it!

6. Finally when I’m totally out of ANYTHING else to do, I can always write a blog entry… or heaven forbid work on my novel !

In other news, I was hoping to go home today, but it doesn’t look like I’ll have the IV antibiotics I need to recieve at home setup in time to go home today.  My doctor thinks I’ll at least be going home by Monday though!  Yay!Recent Comments:

• cannvan commented on 10 Ways To Stay Organized With A Chronic Illness This site is so going to enhance my life and my children and grandchildren as we are going down the
• Maz commented on My Own Advocate Hi, I just missed you on the site, Glad to hear you are up to doing your own research and making you
• Maz commented on My Own Advocate If you are at the ‘end of the road’ and nothing has worked so far why not look at another treatment
• Sympathizer with RA commented on End of the Road? Don’t give up. There is a road back. If you are open to it, you will find it.
• suzanne commented on End of the Road? The Roadback Foundation www.roadback.org Their forum – www.rbfbb.org

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© Novel Patient for Novel Patient, 2009. | Permalink | 3 comments | Add to del.icio.us
Post tags: blog, boredom, caregiver, computer games, computer internet, dune series, free flash games, hospital, hospitalization, human contact, kidney infection, mindless entertainment, scrapbooking