Through my chronic illness, I have come to realize how crucial it is to have faith.  When most people think of the word “faith” they think religion, but there are so many other aspects to keeping faith alive in your life through dark and difficult times.  In fact, the word “faith” is merely defined as “confidence or trust in a person or thing.”

I have been blessed with always having a tremendous faith in myself.  Faith that I have the ability to get through anything no matter what life rolls my way.  But oddly enough, I believe my faith in myself stemmed from my childhood traumas.  As a child I was forced into the role of the third parent in my house.  As painful as it was it gave me an inner strength — a knowledge that I was capable of getting through anything if I just believed in myself.

This inner strength and faith in myself was strengthened as I battled depression.  Living for three years with intrusive thoughts on hurting myself or ending my life and yet not acting on them, save three minor occasions, gave me the faith in myself that I could get through anything if I was determined enough.

So when my illness struck, I’ve always had the faith that I can get through this as well.  Though it isn’t always easy… in fact it hardly ever is, I have kept the faith in myself that I am a strong enough person to deal with whatever I find in front of me.  And that faith has gotten me through the endless doctors appointments and tests, the six and half years of searching for a diagnosis, the prolonged hospitalizations, adjusting to life in a wheelchair, and the daily struggle to keep a positive attitude despite my pain and other limitations.

I have also learned how important it is to keep faith that things will get better, that I will get better.  I have to have faith that I will find a treatment or even a cure that will allow me to live a more normal life again in the future.  This faith that things will be more than okay — faith that things will get better sustains me during my darkest hours.

And then there’s faith that I have in others.  I don’t keep my illness private.  Through this blog, through the people I meet and share my story with, I share my journey with the world.  And I have to have faith in people.  That they will understand.  That they will be there for me.  And though I sometimes find myself disappointed, overall I find that when I put my faith in others they rise to the occasion.  It’s as if they were waiting for me to put my faith in them.  Waiting for me to put my blind trust and confidence in them, and they respond by being there for me in more ways than I can count.  And I am so blessed and grateful for this.

Finally there is the ultimate faith.  The kind you have despite the lack of evidence or proof.  Faith in God.  Though I try to keep this blog secular, I feel I would be amiss if I didn’t share this part of my journey.  Though I was raised Reform Jewish, it never really resonated with me.  It is a beautiful religion, but through it was hadn’t found the close connection to God I’ve so desperately craved especially in the last few years as I’ve struggled with my illness.  I’ve tried out several different churches over the years.  I was going to a Universalist Unitarian church for a while, and though I loved the people and how open they were, I still didn’t find what I was looking for in terms of a close and personal relationship with God.  Finally, two Sundays ago I went to a Church of Jesus Christ of Latter Day Saints or Mormon church with a friend.  There I finally found what I had been searching for.  I have found the faith in God that I had been seeking.  I realized I had it all along.  I’ve prayed for a long time to find this closeness to God that I now finally feel, but I never expected to find it through Christ, and yet there it is.  And as surprising as it is to my friends, family, and even myself, I am getting baptized in a month.    And so I am really excited to embark on this new journey of faith.

Faith is so important no matter what form it takes.  When you are suffering physical pain all the time what else do you have to turn to but some sort of faith that things will be okay.  Whether it comes from within or from others or from God, faith is what has sustained me through my battle with chronic illness.

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!

“You are basically out of treatment options at this point.”

My rheumatologist’s words were like a slap in the face.  The realization that I may be at the end of the road isn’t easy to accept.  The Rituxan didn’t work.  My rheumy doesn’t want to try anything else at this time.  Should I just accept that this is how my life is for the foreseeable future?

I’ve been in a wheelchair for just about a year now.  Perhaps it is time to stop thinking of it as a temporary thing and accept it as a permanent part of my life.  Doing so seems reasonable enough under the circumstances, so why do I feel like such a failure?  Is it wrong that part of me wants to stop fighting it all the time and just get on with living as things are?  Does that mean I’ve given up?

But there is a glimmer of hope.  My rheumy has referred me to another rheumy who specializes in my main diagnosis, Sjogren’s Syndrome.  I still am hanging on to the hope that he’ll have another idea for treatment for me, and that this time it will work.  But I’m kind of terrified that I’m just setting myself up for more disappointment.

1. The illness I live with is:  Sjogren’s Syndrome, but I also have Autoimmune Pancreatitis, Autoimmune Hepatitis, Hashimoto’s Thyroiditis, Fibromyalgia, and Arthritis.
2. I was diagnosed with it in the year: 2007
3. But I had symptoms since: I was a small child.
4. The biggest adjustment I’ve had to make is: to life in a wheelchair.
5. Most people assume: that I’m too young to have this many health problems.
6. The hardest part about mornings are: waking up way to early in pain and never getting enough sleep.
7. My favorite medical TV show is: House, I suppose, but I don’t really watch it anymore.  I have a hard time concentrating on TV.
8. A gadget I couldn’t live without is: my mac.  It is my connection to the rest of the world.
9. The hardest part about nights are: trying to get sleepy despite the pain.
10. Each day I take 28 different medications. (No comments, please)
11. Regarding alternative treatments I: am only open to trying ones that have been shown to work in some sort of clinical trial.
12. If I had to choose between an invisible illness or visible I would choose:  an invisible one.  Since I’ve recently started using a wheelchair, my illness has become move visible and I long to look “normal” again.
13. Regarding working and career: I am currently on disability.
14. People would be surprised to know: that I don’t remember what “no pain” feels like.
15. The hardest thing to accept about my new reality has been: that I can’t just push through the pain and exhaustion without making myself sicker.
16. Something I never thought I could do with my illness that I did was:  travel for pleasure, but I recently went to an alternative reality gaming conference in Portland.
17. The commercials about my illness: don’t exist (which could be why no one seems to have heard of it).
18. Something I really miss doing since I was diagnosed is: hiking and other physical outdoor activities.
19. It was really hard to have to give up: my independence, but I’ve had to learn to accept a lot of help from others.
20. A new hobby I have taken up since my diagnosis is: scrapbooking.  I’m completely obsessed and even do it from bed when I can’t sit up at the table.
21. If I could have one day of feeling normal again I would: backpacking through Australia.
22. My illness has taught me: that happiness is where you make it for yourself.
23. Want to know a secret? One thing people say that gets under my skin is: “You just need to exercise more.”
24. But I love it when people: Call or email me out of the blue to let me know they are thinking of me even if I haven’t been up to hanging out lately.
25. My favorite motto, scripture, quote that gets me through tough times is:  Everything might not happen for a reason, but you can make a reason out of everything that happens.
26. When someone is diagnosed I’d like to tell them: that life isn’t over and that they will find ways to cope and adjust.
27. Something that has surprised me about living with an illness is: how much opening up and sharing about my illness has given me the opportunity to meet new people who in turn share about themselves.
28. The nicest thing someone did for me when I wasn’t feeling well was: lug all my scrapbooking supplies to me in the hospital, so I could take my mind off being there with my favorite activity.
29. I’m involved with Invisible Illness Week because: I hope by raising awareness people will have more sensitivity and empathy for the people in their lives with invisible illnesses.
30. The fact that you read this list makes me feel: hopeful that my sharing about my experiences will make positive difference.

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com

As a Novel Patient, I have my fair share doctor hunting.  It’s taken me several tries to find a specialist who could help me.  Now I have a fantastic team of over 10 of them.  Some of the top doctors in their specialties, it is worth the sometimes five hour waits to see them because they have been able to diagnose and treat me.

The one type of doctor I was missing was an internist.  I’ve put off the search for them for months, but finally decided it was time to find someone to handle the things that didn’t fall under a specialty – my general health.  I needed someone to help coordinate my specialist, make sure things don’t fall through the cracks, and manage my care if, god forbid, I end up in the hospital again.  Since I left my pediatrician behind, I haven’t found doctor able to do that job for me, and between all the specialists, I haven’t had the time to look.  But having been out of the hospital for the longest stretch in the last year and a half, I decided to start the search.

So I researched some internists affiliated with the hospital all my other specialists are at.  One sounded promising, so I made an appointment.

Tuesday, the day of the appointment, arrived.  As I sat in his office giving my long medical history, I could sense something was wrong.  Finally, half way through the appointment time, he looked up and said, “You have so many specialists… what do you even NEED ME for?”  When I explained again what I was looking for in an internist, his objection became more clear.  I was “too complicated” a patient.  He was too old to take on someone as “challenging” as me.  Perhaps a younger doctor would be more able to deal with the “complexity of your case”.  And like that, he declined to take me on as a patient.

Up until this point I didn’t know that doctors even COULD decline to take on a new patient.  However, he kindly referred me to a younger doctor he felt might be more up to the challenge.  He even arranged for me to see him the next day.

So on Wednesday, for the second time that week I drove over an hour into the city to see a prospective internist.  Slightly wary but still hopeful, I arrived at his office.  But quickly he took me back into his office looking like a boss about to lay off an employee.  Apparently he had pulled up my records.  Again I was “too complicated” and he just didn’t want to “take on a patient as sick” as I am.

Rejected two days in a row was too much for me to handle.  I burst into tears when he told me.  Embarrassed, I tried to be polite and thank him for his time.  I then proceeded to cry the whole way home.  Not only did these rejections make me feel unwanted and uncared for, but they made me feel like I must be sicker than I go around every day thinking I am.  It made my illness seem more real, more unwieldy, more unmanageable, more scary, than any test result or diagnosis ever did.  So I cried and cried as Sarina, my caregiver, stroking my shoulder drove me home.

Yesterday, Thursday, I was due in the city once more.  This time for a followup with my Pancreatitis specialist.  At the end of my appointment, I hesitantly told him I’d been having problems finding an internist willing to take me and asked if he could recommend anyone who might be willing to take on my clearly complex case.  He had one name for me, but jokingly said, “I’m not sure he’ll thank me for referring your case to him.”  Luckily he said that in good humor or I would have cried again.

Before the city, I decided to take a chance and call the newly recommended internist.  Amazingly he had a cancellation that afternoon.

Trying not to get my hopes up, only to be crushed once more, Sarina and I made our way over to his office.  And I’m happy to report that this story has a happy ending.  I knew it was a good sign when instead of leading me into his office they took me right back to an exam room to take my vitals.  Then the fairly young doctor arrived and enthusiastically began by asking me what I was looking for an internist for.  He nodded in agreement as I explained what I hoped his role would be.  He said, “sometimes my role will be to corral all the specialists and other times I’ll just need to step back and let them do their thing.”  Then I knew I had a keeper.

He patiently took my whole history, making notes about what he’d be needing to follow up on himself.  Never did the question of me not becoming his patient come up.  He assured me that “medicine almost never happens between 9 and 5″, so I shouldn’t worry about calling him if problems arise after hours.  He sees his own patients in the hospital instead of using a hospitalist.  He does all electronic prescriptions.

We talked about my weight gain from the prednisone and getting me off of it eventually.  Getting a bone density done next fall.  Checking my thyroid on a regular basis.  And he wants me back in weeks to check me after I get my first Rixutin infusion and see how I’m doing.  He said he was very excited to see how that helped me.

In the end, I have found myself quite the novel doctor indeed.