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Today I walked ten whole feet!!!  It was only my second time walking in over a year!

It is something that for a long time I was afraid to even pray for.  But with a lot of prayer recently, I’ve come to realize that with a lot of faith in both myself and in God, anything is possible.

It’s also taken willingness to put up with significant pain.  But reflecting back on how much pain I was in while attempting to even stand a year ago (which is why I was in the wheelchair to begin with – very severe joint pain), the joint pain is significantly less than it once was.  I’m not sure what the final factor in the lessening of my joint pain is.  Maybe the Rituxan finally kicked in after all these months.  I just don’t know.  But I am so thankful that I have the opportunity to try to get up and out of my wheelchair again!  I decided to think that it wouldn’t hurt as badly as it once did, and so far it hasn’t!

My goal is to walk three days a week – Monday, Wednesday, Friday – leaving at least a day inbetween to rest, so I don’t completely over do it.

In the meantime, I’m trying to taper my Prednisone dose very very gradually.  In the recent past, every time I would try to taper the dose my neurological symptoms would flare – face drooping, increased tremors, numbness, and so on.  And I’ve been afraid that this would happen this time.  But so far it hasn’t.  And there are only three differences this time to which I can attribute my success so far.  Tapering insanely slowly, prayer, and the decision to think positivity.  Some combination of the three would be my best guess at the reason.

Though for years now I’ve considered myself a very positive person, it never ceases to amaze me what the power of positive thinking can do.  And now I’ve added prayer and a faith in God into the mix.  I feel a sense of inner peace I have never known.  And perhaps that is the most healing thing of all.

I have a long road ahead of me.  But I plan to take it one step at a time, one day at a time.  That is how I take all of life.  One step at a time.  One day at at time.  With a positive thought in my head and a prayer in my heart.

Recent Comments:

• Renee (aka Shalunya) commented on Love Bug When the right one comes along, he will see past the illness into the heart of the woman he’s fallin
• Alison commented on Love Bug You pretty much said it all. Even if it doesn’t work out, I say enjoy your crush! Don’t wish it away
• Heidi commented on Love Bug I honestly believe there is someone out there for everyone. There are plenty of people who will look
• Alex commented on Love Bug I would point out that whilst you think you may be getting ahead of yourself, from a logical standpo
• 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

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© Novel Patient for Novel Patient, 2010. | Permalink | 9 comments | Add to del.icio.us
Post tags: Faith, faith in god, flare, God, Handicapped, healing, inner peace, joint pain, life, long time, neurological symptoms, Numb, numbness, opportunity, pain, patient, Positivity, power of positive thinking, Prednisone, rituxan, step at a time, symptom, tremor, wheelchair, willingness

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

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© 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

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:

• 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
• Mel commented on Walking: The Power of Positivity and Prayer Congrats!!! I remember the first time I walked. Keep that faith……..God can work miracles!
• Heidi commented on Walking: The Power of Positivity and Prayer Look at you – all up and about!!! You GO girl! You’re an inspiration, and despite your illnesses, an
• Alison commented on Walking: The Power of Positivity and Prayer Awesome accomplishment, and that’s great you’ve set a goal for yourself with walking, something I ke

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© Novel Patient for Novel Patient, 2009. | Permalink | 8 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

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

Today is the first day of National Invisible Chronic Illness Awareness Week, and it has me thinking about thinking about both the visible and invisible aspects of my illnesses.   Nearly a year ago now my invisible illnesses became a lot more visible.  The pain from my arthritis became so severe I could no longer walk or even stand.  I was forced to use a wheelchair for my mobility.

Before the wheelchair (and the walker that came before it), my illness was completely invisible.  At the time I found it completely frustrating that no one could see that I was sick.  People assumed that what they couldn’t see couldn’t possibly be serious.  Sometimes people assumed that what they couldn’t see wasn’t even real.  Now I wish I could ditch the wheelchair and still pass myself off as “normal” when I wanted to.  I feel like now my first impression always inevitably includes my wheelchair.

But despite this very visible symbol of my illnesses, I feel more invisible than ever.  It is very hard to go out in a wheelchair, and I am usually too tired and in too much pain to do so.  As a result, I am mostly home-bound.  I am literally invisible to the people in my life I used to see in person.  Out of sight.  Out of mind.

But though I am invisible to most people in the physical world, I am very visible in the virtual world.  Through this blog my illness is not invisible at all.  It is there for people to see plain as day.  Through this blog the invisible becomes visible.  Here I can let you see the things that most people can’t.

Here the joint pain, the numbness in my left side of my body, the severe dryness, the low grade fevers, the debilitating fatigue, the pain when I swallow, the nausea, the stomach pain, the rib pain, the muscle weakness, the tremors, the migraines, the involuntary muscle moments, the memory and concentration problems, the seizures, the sleep apnea, and the obsessive compulsive disorder all become visible.

Here too, the emotional toll is no longer invisible.  The worry, the loneliness, the anxiety for my future, the grief for how things once were, and the sadness for the friends I’ve lost along the way all become visible.

And I especially hope that lessons I’ve learned, the inner strength I’ve found, the faith in myself, and hope for the future are not invisible here either.

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National Invisible Chronic Illness Awareness Week is held annually in September and is a worldwide effort to bring together people who live with invisible chronic illness and those who love them.

A virtual conference in held at www.invisibleillnessweek.com and the blog is updated a few times a day during August and September.

Bloggers are welcome to participate anytime, but are encouraged to unite efforts during August and September to increase awareness online and share their experiences as well as encouragement. A badge is available that says you are blogging during the actual awareness week.

Start a blog on Novel Patient Community today and blog about your chronic illness in support of the awareness week!

Recent Comments:

• enaxor commented on Celebrate! So glad you had good news and what sounds like a wonderful day for your birthday.
• Kim Alcala commented on Celebrate! It sounds like you had a great day!
• labfly commented on Celebrate! Yay Belle! Happy happy Birthday!
• Katgirl commented on Celebrate! Fantastic News! Happy, Happy Birthday!
• Marti commented on Celebrate! Yay!

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© Novel Patient for Novel Patient, 2009. | Permalink | One comment | Add to del.icio.us
Post tags: anxiety, arthritis, blogging, Chronic, Chronic Illness, concentration, concentration problems, emotional toll, experiences, faith, fever, first impression, illness, illnesses, impression, invisible chronic illness, invisible illness week, invisible illnesses, involuntary muscle, joint pain, life, mind, moment, muscle weakness, Numb, numbness, obsessive compulsive disorder, pain, patient, patient community, rib pain, seizures, sleep apnea, stomach pain, tremor, tremors, virtual conference, virtual world, 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