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.

I’m well on my way on the road to recovery.  I’ve been doing more and more things independently, and I’ve been walking up a storm.  But I’ve been asking myself how much better is better enough?  What risks am I willing to take to achieve a complete recovery?

Since my Baptism three weeks ago, I’ve only used my wheelchair twice – once to attend an all day Transmedia Conference at USC and once to go to the Santa Barbara Zoo for the day with the Singles Ward at Church.  Though I’ve been doing fabulously with increasing my stamina for walking, I’m still a long ways away from being able to walk around all day at a hilly zoo.  The conference and the zoo were both a blast, but it amazed me that I already feel so weird being back in my wheelchair for short periods.  It’s hard greeting people’s belly buttons again when I’ve finally been able to look people in the eye for the first time in over a year.  I also feel more visibly disabled than when I’m just using my walker.

And I’m worried I’m headed back to my wheelchair.  The more I walk the more my joints have been hurting me.  But I’ve been pushing through the pain anyway which probably hasn’t been the best idea because I have now given myself an overuse injury in my left knee.  Now I need to get a knee braces and I’m considering getting ankle braces to prevent further injury.  I’m also supposed to start physical therapy.

So though I’ve been doing great at increasing the distance I can walk, it has come at a cost.  So that is one part of the equation.

The other part of the equation is the question of how I’ve been able to reach this point.  I believe it is largely a miracle.  A gift from God that has allowed me to recover my strength so quickly.  But my doctors feel (and I agree) that it is also that the Rituxan that I did all those months ago has finally shown some benefit.  So the question becomes would another round of Rituxan would get me even farther?  And is that worth the risk?

Those Rituxan infusions were no walk in the park.  I had problems with low oxygen during the infusions themselves followed by weeks of needing to be on extra Prednisone to counter an adverse reaction involving horrible back pain, fevers, and a rash.  And that was relatively minor compared to the other risks involved which could rarely include life threatening complications and infections.  But if the Rituxan helped reduce my joint pain this far, how much more could I be helped by further infusions?  That is a question I will discuss with my Rheumatologist at my next appointment.

In the meantime, I’m left to ponder if this is as pain free as I can get without further risk, can I live with that?  Am I better enough?  But even as I write this, I think I know the answer.

No.

I want my life back.  I want to live without pain every moment of every day.  I want to be able to go hiking and play tennis again.  I want to be able to make plans and not worry about how much energy I’ll have.  I want to be able to accept jobs and not worry about ending up in the hospital in the middle of them.  I want to be able to go back to school and not wonder if I’ll stay healthy enough to make it through the semester.

So NO I don’t want to be better enough.  I want to be better!  And I’m willing to risk a lot to get there.

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.

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.

“How would you rate your pain on a scale of 1-10?”

I detest this question.  But I get asked it all the time from my doctors.  How can you apply a pain scale to chronic pain?  I don’t even remember what no pain feels like.  So the whole scale seems to shift.  Pain is so relative.  I have gotten used to being in pain all the time.  I’ve gotten used to the constant stomach pain from the Autoimmune Pancreatitis and the debilitating joint pain that keeps in the wheelchair.  Not something you want to get used to.  But it’s amazing how much I can even take my normal level of pain for granted.

The last 3 days I was without my pain medication due to a major pharmacy mess up coupled with a significant insurance snag.  My stomach hurt and my joints seemed to be screaming with pain.  In more pain, I was more drained, more cranky, more emotional.  I couldn’t sleep well.  I’m yawning even now from the last few nights of poor sleep.  But strange thing was, I didn’t let myself realize how much pain I was really in until it was over… after I finally got my pain meds today again.

The sudden relief from pain was dramatic.  It’s amazing what you can live with when you have no choice, but I won’t be taking my “normal” level of pain for granted so quickly again.