Thursday, May 28, 2015

I have WHAT??!!!

I haven't written a blog post since early May!  I think today's post will let you know why I have had my energy focused elsewhere and why I chose to remain quiet for the time being.

Until I could tell you more...answers.

First, let me say...
Other than that truth above, this is going to be a fairly educational post.  
That's what I do.  
Always. A. Teacher.

I don't talk/write/post much about my chronic health conditions for several reasons.  First, there is little understood about some of these conditions.  Real people walking around sometimes do not believe in certain conditions.  Some people treat these conditions as cop-outs.  I've even been questioned about my own sins as a cause for my conditions in the past by church members.  These conditions prove difficult to talk about and address also, because you can't see the conditions when you see me out and about.  I look "fine" or "normal."

Five or six years ago, I was diagnosed with Fibromyalgia.  Coming to this diagnosis took quite a process of seeing my internist, an orthopedic spine specialist, a neurologist, a neurosurgeon, a pain doctor, a physical therapist, and regular dates with the pharmacy as I went through medication after medication.  I also had regular dates at the surgery center having varying types of injections all over my back and hips, a rhizotomy, and also sought chiropractic help and massage therapy.

For your own reference point, this is the overview of Fibromyalgia from Web MD:

Fibromyalgia syndrome affects the muscles and soft tissue. Symptoms include chronic muscle pain, fatigue, sleep problems, and painful tender points or trigger points, which can be relieved through medications, lifestyle changes and stress management.

I did not start getting to the bottom of this issue and diagnosis until I began seeing a rheumatologist.  She diagnosed my fibromyalgia and put me on the only medication that has helped.  This med is also the only one that I've been able to take because I do not have any major side effects from it impeding my life.  I also quit teaching.  I cannot stand on my feet all day.  Sometimes, right now, I can't stand for 3-4 minutes.  Stress and illness and weather also complicate and negatively affect my fibromyalgia.  Listen, after the last 3 years of stress, it's a wonder I'm still standing at all!

My rheumatologist has said during all of this time that she fully expected that I would, at some point, test positive for another rheumatological condition. Many rheumatological conditions are hard to diagnose as there are lots of overlapping symptoms among rheumatoid diseases and because it takes a while for some of these markers to show up in blood tests. Until recently nothing definitive showed up on any of my tests.  As of today, I have another diagnosis after blood work, various other tests, and a biopsy of salivary glands in my mouth.  

Sjogren's Disease.
(sounds like you have a mouth full of crackers trying to pronounce the 1st word)

From the Sjogren's Foundation website, a basic definition:

Sjögren’s is a chronic autoimmune disease in which people’s white blood cells attack their moisture-producing glands. 

Although the hallmark symptoms are dry eyes, dry mouth, fatigue and joint pain, 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.

About half of the time Sjögren’s occurs alone, and the other half it occurs in the presence of another autoimmune connective tissue disease such as rheumatoid arthritis, lupus, or scleroderma.
Sjögren’s is a systemic disease, affecting the entire body. Symptoms may remain steady, worsen, or, uncommonly, go into remission. While some people experience mild discomfort, others suffer debilitating symptoms that greatly impair their functioning. Early diagnosis and proper treatment are important — they may prevent serious complications and greatly improve a patient’s quality of life.

Sjogren's is not curable, but it is treatable.  Treatment centers around trying to treat the symptoms.  For each person diagnosed, treatment is individually ascribed.  

My rheumatologist says the Sjogren's disease process in my body is most likely piggy-backing on the fibromyalgia. (Hopefully, that is all it will ever piggy-back on.)

For me, Sjogren's has completely dried out my mouth to the point of being painful. I never go anywhere without water, I wake up at night to drink water multiple times, and I use all of the dry mouth products available--gels, sprays, lozenges, etc..  These things make it barely manageable.  My tongue is cracked, develops sores frequently, and I cannot tolerate spicy foods or foods very hot in temperature.  In addition, my throat clearing, perpetually hoarse voice that I've had for about 8-9 months now, and dry hacking cough are also the Sjogren's disease.  It is also why I have been sick solid since December. 7 antibiotics and 3 rounds of steroids have ruled my life since December. In the last 2-3 months, my joint pain and stiffness has greatly increased. Sjogren's is the reason that it is phyically painful to get out of bed in the mornings, and some days I don't make it out of my chair in my sitting room.

Some days milk shakes are my best friends.

Bottom line = I have felt lousy for a quite a few months now.

All of these symptoms are what prompted more investigating, testing, and the lip biopsy--the only really definitive test for Sjogren's.  There are Sjogren's antibodies that can show up in the blood, but those only show up in 60% of those ill with Sjogren's.  I happen to fall in the 40% who have the disease, but no antibodies.  

Go figure.  
I'm never a textbook case.  
For anything.

My disease process is staged at Grade 2 per the biopsy results.  This means that we are catching it fairly early in the  grand scheme of things.  At Grades 4 and 5, there is usually organ damage and the sufferer is at high risk for problems listed above with the kidneys, blood vessels, liver, lungs, pancreas, etc., and are higher risk for developing lymphoma cancers.  At a 2, I should not have any organ damage.  However, my last chest x-ray did show some interstitial lung condition.  Unfortunately, interstitial lung disease is one of the complications/organs that goes with Sjogren's and which it seems I may have.  I am scheduled for a chest CT next week.  After that, I will know more about my lung involvement.  We will also be looking at the GI symptoms I started struggling with more than a year ago, for which we did not find a specific cause or explanation.

I also had some more blood work today to look for a specific gene.  If I have this gene, there is a medication I can take that slows the progression of Sjogren's disease.  The medication does help with symptoms to a large degree and is usually well-tolerated.  If I don't have the gene being investigated, then my body will not have an enzyme necessary for me to take the medication.  If I don't have the gene and enzyme, I don't know what my other options are just yet.

I will see the rheumatologist again to review my chest CT and genetic testing.  

To end again on a personal note, these conditions are still hard to talk about.  Although I might not be judged for having cancer, I am, and have been, judged at times for having a chronic condition--actually, now, I have TWO chronic health conditions.  UGH!  I try not to focus on them.  I do not want them to keep me from living life fully--especially where my kids are concerned.

I won't have them.  
NO time for that.

Things I've learned from dealing with chronic health issues:
1. NO is a complete sentence.  I don't owe explanations or apologies.
2.  Priorities become even more important and extremely pared down.  Only my husband and children are worth "overdoing it" for. (Mama and Daddy, too)
3.  I have to plan ahead.  I cannot have 2 really full days back to back.  I must schedule life, as much as possible, with built in breaks and time for rest.  
4.  When you want to empathize with a chronic illness sufferer, don't compare any of their pain to yours.  Debilitating pain, frequent illness, and life altering fatigue ARE NOT THE SAME as changes that come from aging, or a brief illness, or a stressful period in life.  Even though your intent may be to show empathy, to convince the sufferer you understand, or even to let them know others suffer things also, these tactics do nothing except to invalidate the feelings and experiences of the one suffering chronically.  Want to say something?  Say, "I'm sorry.  This sucks."  or "Anything I can do to help you today?" even "How is your pain level?" especially "Do what you can.  Don't worry about the rest."

AND.  SERIOUSLY.  I love all my "oily" friends, but please don't tell me I just need some essential oils--either to rub, breathe, or ingest.  Essential oils are not going to change my biology or the condition occurring in my glands and  white blood cells.  I'm looking for best practices, evidenced based treatments, and substances that will not cause more problems with my current medications, conditions, and allergies.  

There have been some recent articles posted that address chronic illness. Two articles in particular give a good idea, from my perspective, of what it's like for the chronically ill.  If you want to know what someone you love deals with daily, read and reflect on these 2 articles:

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