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

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

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

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

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

To make it more personal…

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

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

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

Image by Stewf via Flickr

17

The number of diagnoses I’ve accumulated so far… Sjogren’s Syndrome, Autoimmune Pancreatitis, Autoimmune Hepatitis, Hashimoto’s Thyroiditis, Cerebritis, Neuropathy, Autonomic Dysfunction, Fibromyalgia, Raynaud’s, Erythromelagia, IgA Deficiency, Asthma, Sleep Apnea, OCD, Depression, Anxiety, and ADD.

7

The number of years it took to be diagnosed with Sjogren’s Syndrome.

26

The number of years I’ve been living on this earth.

28

The number of medications I take

150

The number of pounds I’ve gained from Prednisone.

30

The number of pounds I’ve lost recently.

3

The number of pants sizes I’ve dropped recently.

8

My pain level right now.

17

How old I was when I when I last felt at all healthy.

3

The number of surgeries I’ve had… appendix removed, gallbladder removed, bladder stimulator implanted.

2

The number of doctors appointments I have next week.

13

The number of doctors I see on a regular basis.

0

The number of days I’m without pain.

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).

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!

Tomorrow I am heading down out of town on a trip to see a Sjogren’s specialist.  My appointment is on Monday.  Since it is about 3 hours away we — my mom and I — will be spending two nights at my Grandma’s house which is in the area.

I have high hopes that he will be able to provide me with some new treatment options.  At the same time I am nervous about getting my hopes up too high.  I have been disappointed by doctors many times before.

It can be hard to maintain hope when living with a chronic illness especially when you are told by your doctor that you are basically out of treatment options.  But the alternative — falling into despair — is much much worse.  So I choose to maintain my high hopes knowing full well that sometimes I will be disappointed.  That’s okay.  Disappointment is a part of life.  I realized a long time ago that you have to take the good with the bad.

On a different note… Sometimes I surprise even myself with what I can do if I set my mind to do it.  Since the start of the month I have been writing up a storm on novel for National Novel Writing Month or NaNoWriMo.  As of this writing, I am up to 10,701 words which puts me about 700 words ahead of schedule!  You can go to my NaNoWriMo Profile page to continue to follow my progress and to read a synopsis and excerpt from my novel.  Since I started doing creative writing again, I’ve been on sort of a writers high.  I don’t remember the last time I was in such a great mood for days at a time!

I’ve also stood up another time for a another whole minute.  I haven’t been able to do it as often as I would like, but the fact that I’m doing it at all makes me very happy.

I think hope is self-perpetuating.  Hope gives you the strength to reach beyond what you think you can do which in turn gives you more hope.  And all these things give me hope for a good today and a better tomorrow.