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:

Tuesday, May 5, 2015


My first Mother's Day, I took 2 week old Jerica to church for the 1st time.  My mama and my Toomama were with us.  It was a bittersweet day in some respects.  I was finally a mama after a lot of waiting, our precious gift, our yes, our hope.  I was also grieving at that time.  I was grieving for a young woman who chose to give her baby a family she could not provide--roots, God, both mom and dad, extended family.  Our baby girl wouldn't have had all of those things if it weren't for the plan her birthmother put in place for her.  We explain the mixed feeling that can go along with an adoption sometimes with the analogy of an organ transplant.  If my loved one needs a new heart and gets one, getting a 2nd chance at a full life, someone else had to lose their family member.  While we are joyful and hopeful, that family is grieving a loss.  It's similar in an adoption.  A young woman spent my 1st Mother's Day, healing from a delivery--no baby in her arms.  And my arms were overflowing.

An oldie, but goodie in a more innocent time. <3

There are other bittersweet feelings related to Mother's Day.  Not only do I think of my baby girl and son (!) at Mother's Day, I think of  my dear friend, Lynn, and her baby girls.  I'm thankful that they have a mom now after losing their Mommy Lynn as little bitty girls.  I also think of my dear friend, Janabeth.  The week that Jerica was born, and the day Lynn's first baby, Sally, was born, our friend Janabeth lost her daughter Denae who was 5.  Mine and Lynn's 1st Mother's Days, Janabeth's arms and home were emptier.

These rushes of emotions 
that seem so conflicting
--joy and grief--
are a part of the experience for me.  

Other women also.  
Many others.

The last few years have added another layer of mixed feelings related to Mother's Day.  Since Keith has become an atheist and will no longer attend a service with us, Mother's Day has been sadder for me. From the time we had children, Mother's Day and Father's Day did include some small gifts, but was much more about spending the time together as a family--beginning at church and then at a park, having a picnic, going to the movies, going to the zoo, etc.  Lots of moms are sitting in church surrounded by their husband and children.  And I'm sitting without my husband, with one child that hasn't always wanted to be living, and the other who has at times argued greatly about going to church when Dad isn't there.  The 1st Mother's Day he didn't go with us was also one I'd been asked to take care of the Mother's Day gifts for the mothers in the church. So, I worked spending time on other moms, went by myself, and it was not a warm, fuzzy, special day for me. So, the last 2 years, I just haven't gone to church at all on Mother's Day.  My only opportunity to be with all of my nuclear family is to stay home, missing any words, blessings, or honorings for Mothers in church on this day.  (And I came from a family that celebrates everything well--birthdays, holidays, and days like Mother's Day and Father's Day.)

From our NAMI parents support group, we know that there are also days like Mother's Day that are hard for these parents--even if their child is living and is stable and in the home.  Mother's Day can be hard, at the least a mixed bag, because Motherhood is HARD.  And when you are walking through crises with a child and life is upside down and not going like you thought/imagined/hoped/prayed for, it's not always a happy day.  And it is hard for most moms to admit this, because we love our children, we wouldn't trade them for all the tea in China, and we want/always wanted them, and so that mommy-guilt piles up on our shoulders.  When you have a child who struggles with life, needing special intensive help, medication, and even hospitalization, you blame yourself.  And truth be told, we know that there are others who blame us as well, communicated in attitudes and also in hurtful words and actions sometimes.  To my moms in this situation, sometimes it helps to admit it to other moms in the same situation and to know that these moms struggle with the same feelings.  We can do this together without judgment, and that is so important.

Below is a letter that was penned to Mothers who have children of all ages struggling with their mental health conditions.
Read this, Moms, 
for whom motherhood is often a struggle, 
an experience in grief, 
a call to advocacy.  
Take it in.

The following was taken from an online NAMI discussion board in May 2009.
To all the mothers in our group,
Let me take the liberty of representing the men of the group in wishing all of you a blessed Mother's Day this Sunday. I'm sure the other guys will chime in. So, for just a moment, please let me speak to you what I believe your kids would say to you special mothers if only they could.

Dear Mom,
First, thank you for never letting me go. I know I am sometimes hard to love and hard to deal with. My mind just isn't working right and I can't tell you always what is really on my heart. Mom, this is a scary world I live in. The only sanity to it is my deeply ingrained knowledge of your love for me. I know it at the depths of my soul, even though I can't always express it on the outside. You keep pulling me back to reality. Your touch, your voice, and your being calm my soul at the foundation. I will never in this life be able to repay my debt to you and I know that you will never stop loving me no matter what. I know it hurts you to think of all the things you wished for me that may never be. That's okay mom. I don't need all that. I have you. If only I could, I would tell you all these things myself. I would do things for you that others do for their moms. I so want you to be proud of me. I am doing my best. That is what you taught me to do. I did listen to the things you said.
Mom, you are the most loving, kind, gentle, and good thing that I've ever know in this world. Please know how much I love you. Please know how important you are to me. Please know how much I still need you. I am so sorry that my illness prevents me from being able to tell you all of this directly - but you, mom, you know my real heart. You can see into my soul. You always have. Look deeply within me and you will see all that I have said here. Mom, you are the greatest mom in the entire world. I love you with all my heart. Please forgive all the things I can't control and know that even if they make me say things I don't mean, that I love you anyway. Thank you for never leaving me and never letting me go.
Your Son/Daughter

So moms of our group: I am confident that what is expressed above is truly the way your kids feel. As you read it, put their voice to it in your mind. I wish you a blessed Mother's Day. You deserve it. You are all the most incredible mothers I've ever had the privilege to know. Each of you is in my prayers.

Take care, James

This year as Mother's Day approaches, I feel shattered and the tears flow easier than normal.  Because there is a mama in Irving, a mama I've known for nearly 10 years who is burying her only child this Saturday.  And she will have to face Mother's Day.  Without her girl.  Without Lacie, who is the spitting image of her.  Lacie, 19, was the victim of a shooter this past weekend, just as she was about to head back to Irving for the summer.  Lacie, a beautiful spirit, a lover of animals, in the wrong place at the wrong time.  A senseless act.  A thug.

Pray for this mama this Sunday, as she faces life without this child of hers.

I do not know if I will be up for church this Sunday.  I have been feeling like I might be this year, simply because Keith won't even be in the country this Mother's Day.
So maybe it will feel better? 
But now.  
I have to get through the next few days.  I'm going to a funeral for a young woman who should not be dead, who just wanted to be a veterinarian and save every animal.  I'm going to hug a mama who has to say good bye to the only child she's been able to carry.  I don't know how Lacie's mama will even be able to pick her head up off the pillow this Mother's Day.

And I am completely undone.  
And none of this is ok. 
Fellow Moms, especially those whose lives don't look like they had hoped, dreamed or planned, keep looking for the stars even as you sit in the rubble.

And take in this song.  
A place I understand.  
A place I hope to still reach.

A prayer for you and me...

So, if you see women alone this Sunday, hug her.  She might be missing a child, her own mama, her husband, or the life she thought she would have.  Hugs.  Just hugs.  No platitudes or empty statements.  Just love.  Tears are allowed to.  Just let them flow.

Hugs, physical presence and tears heal a lot more than words.

If you know a single mama, take her kids for a few hours.  Give her a respite and take her kids to pick something out for her on Mother's Day--something she didn't have to plan, pull off, or even pay for if you are able to help monetarily.  These mamas often get overlooked.

And should you feel moved to continue the legacy Lacie hoped to leave as she cared for all of the animals, please visit this Gofundme site for Lacie's Legacy.  The funds will be used to establish a non-profit foundation--For the Love of Lacie's Animals.