Novel Patient » brain

A Place For Him

Novel Patient — Mon, 24 May 2010 05:34:00 +0000

Things have been emotionally rough and raw lately. Lot’s of things are in transition. Relationships in flux. And I’m still stuck in the hospital (33 consecutive days and 39 total days in the hospital by my count). I’m trying to think of it as being 39 days closer to being released from the hospital. It doesn’t work that well though. But cheery flowers like these ones I got from my Great Aunt and Cousins brightened my room and my mood.

Tests a trickling in and no definitive diagnosis concerning the cause of my brain stem inflammation is yet emerging.

So I was especially pleasantly surprised to receive this cuddly visitor today. It was just what the doctor ordered.

In the midst of confusion, I often turn to poetry to help capture my thoughts. I wrote this one in about ten minutes, and I rather like it. An emotional moment forever frozen like a bug trapped in amber.

A Place For Him

by Lauren Soffer

Life can be wild
Wonder is lost on this child
So she goes it alone
As she makes her way home

But the time she tripped
And she didn’t fall
A silent scream
Yet He heard the call
Still She goes it alone
As she makes her way home

Not ready
Not ready to let go
Not ready
For a hand to hold
Cause even crying all alone
At least she knows
It’s all she knows

Life can be wild
Wonder is lost on this child
This girl must
Grow up
Not a child anymore
Stand up
Reach out a hand
Lift up
Her heart till it holds
Always
A place for Him

EDIT: Last night my friends Spencer, Kristi, and I had a blast in my hospital room writing music to my lyrics. Here’s a REALLY rough take of it – complete with my voice still completely hoarse from an allergic reaction and nasal from having a feeding tube up my nose. Hehe. So forgive my lack of ability to hit any of the notes right now, but I at least wanted to give you the idea.

Recent Comments:

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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: amber, art, Aunt, blog, brain, brain stem, cause, center, confusion, consecutive days, count, cousins, definitive diagnosis, Demyelinating Diseases, diagnosis, doctor, emotional moment, ER, Faith, flowers, heart, help, hospital, inflammation, Lauren, Lauren Soffer, LDS, life, midst, mom, moment, Neurological Disorders, patient, place, poetry, relationship, relationships, script, silent scream, soffer, time, title, transition, type

Shattered Trust

Novel Patient — Thu, 20 May 2010 00:15:59 +0000

I’m Daddy’s little girl all grown up, but I still need my daddy. I want to bask in his strong embrace. Instead he gives my heart a chase. He pushes me away into the wrong kind of space.

My dad and I hold polar opposite believes when it comes to the treatment of medicine. I believe in studies and the scientific method. He believes in testimonials and isolated case reports. But that it is neither here nor there. In our differential beliefs we are at in impasse. And no matter how I beg and plead I can’t get him to respect my wishes.

I even tried a different tact. I recently agreed that once I am recovered from this current hospitalization I would agree to spend two sessions with an alternativie medicine worker of his choice and fully hear them out and what they think I should do for my health. But then, my dad went the very next day against my will and set up a consultation between an alternative medicine doctor out of state and my current internist. This is only one recent example of what has gone on over the years as I have struggled to find my path to health and he as struggled to get me to follow a completely different path.

Feelings are hurt, boundaries has been crossed, trust has been broken. I am left unsure if I want him in my life at all right now. As much as it would hurt to cut him out when I need his support the most, he doesn’t seem capable of giving me the support I need anyway. So much trust has been broken. I just want him to hold me and tell me it it will all be okay. Instead he hold me at arms length and tells me what I’m dong wrong.

And the stress from this has been tremendous. I can’t stop crying. Between the being sick itself (34 total days in the hospital and counting) and the fear of the great unknown – all we really know so far is that my problem is with some kind of inflammation in the brain stem – it might be MS (multiple sclerosis) or something like it. And then there’s my dad making it worse. Telling me the treatment I’m choosing for myself is going to kill me. He needs to respect that its my body and my choice and he just can’t for whatever issues he has gong n his inner psyche.

So in the meantime… I will get by without him.

EDITED: to include clarification about my willingness to see certain alternative medicine practictioners.

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: ADD, alternative medicine, art, blog, boundaries, brain, brain stem, case reports, chase, Conditions and Diseases, dad, different path, differential, doctor, ER, Fear, feeling, feelings, gong, great unknown, health, health an, hospital, impasse, inner psyche, Internal medicine, internist, isolated case, life, little girl, Medicine, medicine doctor, multiple sclerosis, Neurological Disorders, novel, patient, Physician, scientific method, stress, struggle, title, treatment

The Unexpected

Novel Patient — Tue, 10 Nov 2009 23:39:06 +0000

Sometimes you expect one thing and get another… especially when living with multiple chronic illnesses. I finally saw the Sjogren’s specialist at yesterday. He spent a good 40 minutes pouring over my records and taking notes on them. He listened to my insanely long list of symptoms.

The interesting thing is he came to the conclusion that Sjogren’s probably isn’t my main diagnosis. He really feels that I have some sort of autoimmune neurological disorder going on causing the seizures, episodes of paralysis, tremor, severe pain upon standing that has me in a wheelchair, motility problems, bladder problems, memory problems, and recent facial drooping and uneven pupil dilation. He thinks the Sjogren’s is secondary to whatever is causing all of that.

He’s going to be coordinating with my normal rheumy to get me a lot more specific tests to work me up for this and try and figure out if this is originating in the peripheral nerves, ganglia, or brain. He said he suspects that it is probably in both either the peripheral nerves or ganglia and also in the brain. He also probably wants to me travel to John Hopkins to see a neurologist specializing in this there. He said my case is one of the most unusual and complex and in my situation I need to go to the top doctor even if he or she is located on the other side of the country.

I’m not totally sure what to think and am still processing this. I went to him expecting to discuss other treatment options for Sjogren’s and am now going to be pursuing an alternative primary diagnosis instead.

I’m also feeling pretty scared. I feel like I’ve been thrown back out into unknown territory again. Back trying to tread water in the deep end of the pool. I also know that the kind of disease he thinks I probably have is not something that is good to be diagnosed with. I’m also frustrated that no one has really seriously pursued the neuro stuff thus far and that I had to drive 3.5 hours to see a Sjogren’s specialist to figure that Sjogren’s probably isn’t my main problem. Sigh.

I guess part of it too is that another whole year of my life has rolled by… I just turned 26… and now we are back at trying to diagnose me again which means its going to be even longer till we can start a treatment other than prednisone again which means its going to be even longer before I have some hope of having some semblance of a “normal” life back again. Maybe its because it’s that time of the month right now as well, but I’m just feeling really upset and like this is a step backwards. I know intellectually it is really maybe FINALLY a step in the right direction, but it sure doesn’t feel that way right now. I’m 26 and I want my life back. I’ve been too ill to have a “normal” life since I was 18. I’m just so tired of it all.

I guess the worst part is the not knowing what’s going on or what to expect. If the doctor were to just tell me I’m going to be stuck in a wheelchair for the rest of my life at least I could learn to live with that fact. But I don’t have any facts right now to learn to live with so I can grieve and move on. Yes I suppose that’s the worst part of all.

I feel so lost right now I don’t know what to do with myself really.

In the meantime, my mom and I are staying at my grandma’s since she lives by this new Sjogren’s specialist which was 3.5 hours away from where I live. We’ll be driving back on Wednesday. The Sjogren’s specialist said he’d get back to me in about 2 weeks – after he has a chance to talk to my current rheumy and review all the neurological testing I’ve already had done, so that we don’t repeat any tests unnecessarily. Then there are a bunch of specialized neuro tests that I’ll need to have done either around here or at Johns Hopkins.

Intellectually I know this is a good thing and that finally getting the correct diagnosis will lead to the right treatment that will eventually get me healthier and able to live more of a life. Right now I’m just feeling kind of depressed about the whole thing. I’ll be okay though. Just takes a little time to process all of this.

In the meantime I’m staying more than busy. I’ve been continuing on with National Novel Writing Month where you try to write a 50k word novel in 30 days. So far I’m at about 12k words, so I’m doing fairly well. I’ve been letting a handful of beta-readers read along as I write it, and the feedback has been extremely positive and motivating for me to keep writing. I’m also working on designing two online games and working on a huge needle point. So at least I’m not bored.

It all really comes back to maintaining hope. Emotionally this has been a bit of a setback for me because I was expecting answers and got more questions. But I choose to maintain hope that this will lead me to the right treatment in time. Ultimately I already have whatever I have. The diagnosis — the label — won’t change that. I am learning to live with whatever it is regardless. And I have faith in myself that I will get through this. As long as I don’t loose hope I haven’t really lost anything. There are always new options and opportunities I can make for myself if I remain hopeful and open to them!

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, 2009. | Permalink | 10 comments | Add to del.icio.us
Post tags: autoimmune, autoimmune disease, bladder problems, brain, Chronic, Chronic Illness, chronic illnesses, diagnosis, disease, doctor, Faith, ganglia, health, hope, illness, illnesses, john hopkins, johns hopkins, life, memory problems, national novel writing month, neurological disorder, neurologist, novel, pain, paralysis, peripheral nerves, Prednisone, seizures, severe pain, sjogren, sjogren's syndrome, specialist, symptom, treatment, treatment options, tremor, uneven pupil dilation, unknown territory, wheelchair, Writing

Dreaming Big

Novel Patient — Thu, 15 Oct 2009 06:22:22 +0000

When you are faced everyday with a chronic illness, it is easy to find your life suddenly defined by the things you can’t do which is why its why its all the more important to remember to find things you can do.

It can be little things you still can take pleasure in. For me it is things scrapbooking, writing this blog, reading a good book. But sometimes you have to dream big and push yourself. Sometimes you have to WRITE a good book.

There are a lot of things I really can’t do. So many things I gave up due to my illnesses. I no longer can go hiking or play tennis. I can’t even go out in the sun much due to sun sensitivity. Before I got sick I dreamed of being a filmmaker and was attending University of Southern California’s film school in pursuit of that dream. Sadly illness and the financial hardship that often comes with made me a college drop out. I used to love acting and community theater… another passion I’ve had to let fall by the wayside.

But it hasn’t been all giving things up. My illness has made me push myself to find new ways to stimulate, entertain, and express myself. I discovered my passion for scrapbooking and other crafts. With nothing to do but sit at my computer all day long, I learned I had a knack for the technical . Now I can build websites and social networks from bed. I got involved in alternate reality games as a player and later as a game designer. Through these games I found an online community of the most supportive, caring, and talented people I know who I feel fortunate to call my friends. Friends that have accepted me illness and all. I started writing this blog and rediscovered my passion for writing.

Which is why next month I am going to push myself once more. Next month is National Novel Writing Month, and I have signed myself up for the second year in a row. And along with the other participants, I am going to try and write an entire novel in a month.

It is scary to announce this here on this blog because now I am in a way accountable to someone other than myself. But I think that will be a good thing as last year I barely managed to write 1000 words. Last year, I was fresh out of a 6 week hospitalization, but my novel succumbed to the pain and the fatigue and the brain fog. I am worried that I won’t be able to concentrate this year. That the pain will be too distracting. That I’ll be too tired. But then I remember all the things I have already given up and all the things I have gained since this illness began and decide that if I give up trying and I give up the DREAM then I have already lost.

If I don’t end up writing a novel in a month, so be it. Frankly I would be happy to make a big dent in a rough draft. Even that would be a huge accomplishment for anyone. But I’m dreaming big, so I’m going for the whole thing.

During the month of November, I invite you to track my word count as I write on my NaNoWriMo page. I invite you to cheer me on, or even join me! If writing a whole novel in a month isn’t you’re thing, I hope you’ll think about the things you’ve given up along the way due to your own pain (physical or otherwise) and all the things you’ve gained along you’re own journey, and still remember how to dream big.

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: alternate reality games, blog, brain, brain fog, Chronic, Chronic Illness, crafts, Fatigue, film, film school, financial hardship, game designer, hope, hospital, hospitalization, illness, illnesses, life, nanowrimo, national novel writing month, novel, pain, patient, scrapbooking, social networks, sun sensitivity, university of southern california, Writing

Crooked Smile

Novel Patient — Sat, 03 Oct 2009 21:45:29 +0000

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:

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: brain, brain inflammation, Chronic, crooked smile, DailyMugShot, hard time, mugshot, neurologist, picture, Prednisone, pupils

My Own Advocate

Novel Patient — Mon, 28 Sep 2009 04:05:33 +0000

Right now I’m waiting for some extra pain meds to kick in. I’m trying to tapper my Prednisone dose down from 25mg a day to 20. It doesn’t seem to be going well. After dinner that telltale Autoimmune Pancreatitis pain started up for the first time since I was in the hospital last. Not good. I’ve also been running low grade fevers in the afternoons. I suppose I’ll be putting in a call to my Rheumatologist tomorrow.

I also need to call my Internist for an appointment to check out what seems suspiciously like a sinus infection.

And I have a handful of other medical related calls to make (including some especially dreaded ones to my insurance company). It’s enough to make me want to go hide under the covers and go back to sleep.

I always tell people that you have to be your own advocate, but it can be downright exhausting under the best of circumstances let alone when you are sick.

But I, like so many others, don’t have anyone else to do it for me. So I have to be my own advocate. I have to stay on top of these phone calls and appointments and lab results and new symptoms. But lately it just wears me down and out. It’s a lot of stress and a lot of effort. Mentally and emotionally. It’s all in the details, and so much is at stake.

It shouldn’t be this way though. When people are sick they should be able to just focus on getting better and not navigating through medical bureaucracy and red tape. It scares me to wonder what would happen if I became completely to ill to do it for myself. Who would advocate for me then? There are so many people already in that very situation. I shudder to think what kind of care they are getting.

There must be a better way.

In the meantime, I do what I have to do regardless of the brain fog making it hard to think straight and the fatigue making it hard to keep my eyes open. Because I’ve learned that even though being a professional patient is a full time job, you don’t ever get to call in sick.

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: advocate, appointments, autoimmune, autoimmune pancreatitis, brain, brain fog, bureaucracy and red tape, circumstances, Fatigue, fever, hospital, Insurance, insurance company, internist, low grade fevers, meds, pain, patient, phone call, Prednisone, professional patient, Rheumatologist, stress, symptom, waiting

Art Therapy

Novel Patient — Mon, 07 Sep 2009 01:38:30 +0000

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.

[View with PicLens]

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:

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, 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

Venting…

Novel Patient — Fri, 14 Aug 2009 04:33:35 +0000

I just need to vent. Feeling a bit sorry for myself. I’m just so frustrated and tired of how things are going! I’ve been in the hospital a total of 2 weeks with this kidney infection now. I’m only 25 years old but my health is just completely in the toilet. I’m so ill I need a full time caregiver and am in a wheelchair. I can hardly get out of bed most days. I feel like the example for every possible complication of Sjogren’s! Between the AI pancreatitis and the AI hepatitis and the brain inflammation wreaking all sorts of havoc. Then there’s the arthritis which has me in a wheelchair that I wonder if I’ll ever get out of.

I’d say I’m too young for this, but obviously I’m not.

I’ve lost most all my friends to being sick. None of them wanted to deal with it. They are busy leading their lives and don’t have time or the desire to see or talk to me.

I’m tired of being such a financial and time burden on my mom. I feel so physically helpless and I miss my independence terribly.

Most of the time I put on a cheerful face and make the best and even find the positives of this bad situation, but right now I just am feeling really angry and frustrated and needed to let it out. So thanks for listening.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, 2009. | Permalink | 8 comments | Add to del.icio.us
Post tags: arthritis, bad situation, brain, brain inflammation, caregiver, complication, health, hepatitis, hospital, kidney infection, pancreatitis, sjogren, Venting, wheelchair

Busy Busy Busy

Novel Patient — Wed, 20 May 2009 04:52:37 +0000

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:

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, 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