the public shame of invisible illness

I learn new things every week with this whole Sjogren's thing.  A few weeks ago, I was convinced my spleen was enlarged and so when the pain was pretty bad with my pain meds, I moved up my Rheumatologist appointment one day (they had a cancellation- i got lucky!).  The pain wasn't too horrible when I arrived or during the appointment, but when I explained that it wasn't gas or chest pain, he began to poke around.  It hurts here and not here, right?  um yea.  and here, but not here, right?  um, yea, that's weird, I swear, it was like under my rib cage, but it feels like my chest cavity hurts.  So, of course I don't remember the name for it, but I officially have inflammation in my chest.  Yea, wherever there are joints, I'll have pain.  And if it can hurt like almost a 7 on the pain scale AFTER a pain medicine, I'm afraid what it'll feel like some day unmedicated.  But, I wasn't really that embarrassed to tell my Rheumatologist that my spleen is enlarged.  He understands my need to research my symptoms, educate me on sjogren's, and even allow me to start and stop medications when I feel I need to (that was another part of the visit- i started back on methotrexate and then informed him during the visit and asked for refills).  

But here is where last weekend Sjogrens took over my life for a second.  I mean, my life is chaotic anyway.  I play many roles and coordinate many schedules.  That's what Pastors do. That's what parents do.  Coaching tee ball has taken over my life for almost three months.  And so when another parent was willing to plan our end of the season party, I was so grateful.  I had researched a few trophy places, but hadn't ordered them yet.  Last week, I realized the party would be on Sunday and that meant I should have had trophies ordered weeks ago.  I had been waiting on parents for some help with 'superlatives' so we could engrave them on the trophies, but then realized I couldn't wait any more.  After visiting two different shops in person last Tuesday, I returned to my favorite on Wednesday and met the owner.  He had coached little league for 28 years and was so friendly, helpful, and even willing to get the trophies done in two days so we could have them for our party that weekend.  

So Friday, I picked them up.  Nope.  That's not how my brain works anymore.  Instead, I spent the morning getting the antibiotics and steroids to take care of the chest cold my immune system can't get rid of because I've taken too much methotrexate lately.  Instead, I remembered to bring tape to the booth where I had promised to volunteer a few months ago.  I spent a mere two hours sitting in while the all day volunteers had lunch.  Instead, our family did end up in the Johnson City Press at the Blue Plum Festival!  And when we returned home, I finally figured out why I felt that nagging feeling all day long.  That piece in my brain that was there, but I couldn't grasp it.  It's like when there are words that I can't find.  Or when names are lost.  But somehow I remember numbers and street addresses.  I can probably stalk someone quite well.  But at 6:30pm Friday evening, I realized I had forgotten to pick up the trophies for our tee ball party.  I called the shop and let it ring about 20 times till their machine picked up and left a joyful message, hey, if you are there on Saturday...

Our last tee ball game was Saturday morning and so I decided one last time, to ask about our numbers.  We expected a good turnout and so I confided in a trusting parent (the superstar that planned the party).  As I began to tear up, she said, do you have the number... and the phone number rolled off my lips...282... like, how the hell can I remember a freakin phone number, but forget to pick up a box of trophies that I ordered two days prior with a bunch of hoopla surrounding it?  

I walked to the car defeated, like this was the part of being the coach that I was so excited about from the beginning.  My memory/brain fog, my sjogrens brain continues to lose 'function'.  I feel as if I should identify as a 70 year old...this is a part of sjogrens that is so difficult to prove, but that on all patient support sites identify as a primary symptom.  But it isn't who I am.  I do not live in brain fog all the time.  My eyes are not bone dry all the time.  My mouth is always dry.  My joints hurt all the time, but not horribly all the time.  

Maybe someday, I'll be able to say I have Sjogrens.  Sometimes I can forget very important details and I apologize for that.  I'd love to volunteer or lead this, but could someone help remind me?  

And as far as the trophies go.  I went with the right trophy place.  Choosing a place where the owner is also a little league coach pays off when you need to get your trophies on a Saturday evening.  It also pays to trust others and let them help you when you've forgotten something or messed up.  I don't think she realizes how much of a sjogren's hero she became for me last weekend, but it's why I share with you all.  Thank you to others who have been heros for those of us with autoimmune disorders and other invisible illnesses.  

"Healing may not be so much about getting better, as about letting go of everything that isn't you--all of the expectations, all of the beliefs--and becoming who you are."---Rachel Naomi Remen

Faith and the illness gift

It's been awhile since I've updated and I've been feeling a need to write more lately.  After reading a blog that CNN highlighted, I've been thinking about faith a lot.  I've also been quite embarrassed about my faith as well.  About how I've 'used' it in the past and how I've isolated people throughout my life.  I'll try to be general about this-- but I've even tried to catch up with those I 'evangelized' in high school so I could apologize for the pressure and stress I created instead of just being their friend.  However, all routes I've taken for contact are dead ends.  

I've posted on a blog about raising one's children without God.  While I decide to parent differently, I was able to leave an honest response and receive a heartfelt thank you.  Other Christians were not so eloquent with their words and the proselytizing began.  What are we so afraid of when others believe differently?  Do we believe that because they claim to 'not' believe due to really shitty circumstances that they will be sent to hell?  One of the blog responders had lost two daughters, and a few other family members.  While she held her dead 8 month old, a chaplain shared with her about his faith.  That's pretty shitty chaplaincy.  We wonder why people question God's existence.   

God/ess/divine does not need more angels in heaven and God/ess/divine does not have a plan for the death of your child.  

I am able to sit with these questions of why... usually with a knot in my stomach, but I can sit with them.  I'd like to punch God in the face or privates if I ever 'get to heaven', but for now I still believe even though shitty things happen in the world.  I'm not sure what I would do if a really shitty thing happened to me, but for now, I stay grateful and remind myself to live.  

Which brings me to why I've included a rant about faith on my 'illness' blog.  I have Sjogren's Syndrome.  The syndrome does not fully clue one into the amount of organs and body parts affected by this 'syndrome'.  It is a full autoimmune disease.  Disease.  As my tears and saliva dry up, my joints are too.  The inflammation leaves me paralyzed most days and the issues with my 'brain fog' as Sjogren's patients call it are incredibly embarrassing.  (that's another very horrible story)  I mix up words, use wrong words, and have an even bigger challenge thinking on my feet.  (it's never been a talent of mine)

But, a wise older minister explained his 'illness' as a gift.  He is a very seasoned Pastor, Chaplain and even a Professor of Pastoral Care.  I trust his words and his journey.  So, I've started to see my illness as a gift.  I've become a sort of 'wounded healer' in many ways- but my neck surgery scar does that for me anyway.  Why do I need another pain or illness as a gift.  This is a pretty shitty gift.  And who is the gift giver?  

I hope to explore this idea of illness of gift, but it'll take some words and prayers and meditation.  I've already opened the gift and thrown out the receipt so if you don't mind, I'll continue to read the instruction manual for awhile.  

Transitions

Today is the continuation of a month of transitions in our household. I finished my part-time ministry at the end of July with St. John's and next week will begin a Chaplain Residency at the Mountain Home VA.

But, today my five year old started kindergarten. And today...three years ago... I gave birth to my son. And that was the beginning of my journey of chronic, invisible pain.

Today also marks my first higher dose 'fog' day. I took two more little orange pills last night to round my dose to 15mg of methotrexate a week. And strangely, I feel fine. Maybe it's the adrenaline of sending the oldest to school or the youngest celebrating a birthday, but I don't have the splitting headache or the inability to function like I did the first few weeks. I got out of bed and took a shower, got two kids ready and one to school by 8:30am. Success.

A few weeks ago I decided I couldn't take it anymore and rescheduled my rheumatology appointment for an earlier date. I wasn't sure what was going to happen, but I knew I needed another push in my fight to feel better. Once again, my symptoms aren't visible and insurance companies don't like to pay for things unless you've tried the cheaper version first, so we just upped my dose of my existing medication.

But, two weeks ago, I finally had a complete malfunction. I had to lay in bed and that's all I could do. No sleeping, just laying. And a few pills to get rid of the pain. My shoulder, elbow, and wrist hurt so bad it felt like I'd broken them. A little rest and a lot of pills later, I was able to function and move forward.

With all this, I realized something lately. Our pain scales change over time. The worst pain I had ever experienced was a dog bite, then a tooth ache (i ended up having such a bad infection- it landed me in the hospital for IV antibiotics), then my neck and that lasted almost 13 years. Finally, I had the curse and privilege of pitocin induced labor (thanks to my love for food and fast growing kids). I lasted till the early stages of transitional labor with both. I thought I felt pain with my first child, till I had my second child. That pain was pretty bad, but it's also the placement of pain that gets me. It hurt and will forever be 'off' the charts on my pain scale.

So, when I started having 'joint pain', I thought this isn't bad, but something is wrong. And then it got worse and then it got worse. So, how can pain be a 5 months ago and now a 7? When, really, looking back-- it was probably a lower amount of pain months ago... I'd just never experienced it before.

We continually have to change our perspective throughout life. I used to think that all adults were mature until I became an adult. I used to think that well, we won't go there...but it is amazing how we change, especially when we have the ability to look back at ourselves. My first instinct is to kick myself at the days when I thought I couldn't function, but really, couldn't grasp my pain level.

I'm finally at the point where I'd like to use the little cliche...when life gives you lemons, make lemonade. The problem is. I can't really squeeze the lemons. It hurts and I don't have the strength.

I start a new full-time job on Monday. The first since Maggie was little and both kids will be cared for by someone else. I will have to wake up EARLY to get everyone to school and work. Then, I'll have to have enough energy to 'work' a full day and still have enough energy left over to pick the kids up and make dinner, then put them to bed. This is terrifying because I don't think I can do it.

But, with my perspective changing, I know I'll be able to fight for my normal. Along with life's transitions, come new perspective. I hope to gain a little more.

Coming out of the Arthritis Closet...

This is my 'coming out' of the arthritis closet. Most of you know that I share WAY too much information sometimes and so it might be surprising that I've been able to hide my experience for a good while. I want to share with you my experience this past year so that 1. you'll know what i've been going through and 2. you might be a little more compassionate (in case you weren't) to others who have chronic pain issues (especially ones that are NOT visible).

My reasons for staying 'in the closet' (sorry gay friends if this offends you) are that I don't have a confirmed diagnosis and I've been avoiding the 'helpful' comments. This is my story and it is long. It is unique to me and so if you happen to have similar experiences- make sure you research and get yourself to a doctor, a good one, that will listen to you and stay up to date on research.

After Isaac was born in 2008, I had terrible headaches. I also had back pain that started at the 'bottom' and traveled up the spine to my neck and head. The headaches didn't go away for months. We never got an explanation, but I was able to get to a good D.O. Neurologist and score a prescription for migraines that come and go (after trying the migraine diet which sucks- i love cheese). He was the one who first listened to my 'complaints' about my hands and did an MRI for MS. My hands would get 'stuck' in a position if I was scrubbing something or holding on tight to something for more than a second. It would come and go, but it began getting worse. Dr. Holt then did some bloodwork last summer. I was quite surprised to get a phone call asking me to return for more blood work. This made me nervous. I didn't know what we were dealing with, but only that I didn't feel right. The results were 'normal' so I went on my way without answers. I had been assuming my hand issues were from my neck (reminder: i had disc replacement surgery on my C5/6 disc six months before this)-- I had some spinal cord damage and so we sort of blamed my hands on that. The other joints that were starting to hurt-- I just blammed it on bad diet and being fat. I had lost a little weight before my surgery, but gained it all back in July of 2010 while taking meds for my neck and nerve pain. I'm out of shape and unhealthy. That's why I thought I hurt. But that wasn't why (at least the only reason).

I went back to my neurosurgeon to make sure my disc was positioned correctly and that there wasn't anything else going on. My recovery from surgery was VERY slow. I had begun to have low back pain. I remembered when Isaac was born that there were periods of time when I had to put him on the floor, kneel down on my hands and knees just to sit down to change his diaper. Getting up was the same routine. My back was so stiff and hurt so bad I could hardly move. And this was the low back-- the healthy part of my spine. (i have scolosis in the mid section and well my neck is a mess) At the neurosurgeon, I asked about my low back and mentioned my joint pain and other numbness and tingling in my legs and feet. I had a new Dr. since mine had a stroke and wasn't practicing and he did a blood workup on me that was so big, JCMC (the local hospital) had NEVER seen it. I had 25 viles of blood taken and was tested for EVERYTHING. I do not have lyme disease or lupus or anything else connected to joint pain that a blood test could tell us.

I do have a slightly elevated RA (or RF) factor (one of the first tests for Rheumatoid Arthritis) and a positive HLA B27 gene. I was referred to a Rheumatologist. I went in November which was just in time because by this time, my joint pain was getting worse. I was ALWAYS tired and couldn't stand for more than 5 minutes without my low back hurting. I was taking between 8-12 advil a day-- something that I'd already been on for my neck for almost two years. (long term NSAIDS can kill the stomach)

All my other blood tests were normal and I didn't have the classic 'RA' symptoms of inflammed, red, swollen joints. I had an x-ray of my pelvic area and there was no evidence of AS. I made a six month follow up appointment and went on my way with a 'come back if you need us' comment.

Side note:

AS is ankylosing spondylitis. It is a genetic disease that usually runs in males, but females do get it and it presents itself a little different. Most of the time, AS will fuse the low back all the way up. It will decrease breathing ability, it will affect the eyes, and many times the colon. It will eventually kill, if a side effect or other symptoms doesn't first. (RA patients usually die from heart disease-- one of it's lovely complications)

Weeks went by when only my hands or feet hurt. And then my knees and elbows and shoulders and hips started hurting. Then my jaw. My jaw was so inflammed, the TMJ doctor couldn't finish his evaluation. (part of it might have been from grinding my teeth while sleeping- in case you've been lucky enough to hear that)

I went back in February/March and was put on an actual medication. All these meds have serious side effects, but my quality of life, ability to raise my kids and continue working well was being affected. I needed more help to get me off the chair to help care for the house, or kids, or myself. The medication, I believe, gave me some strange vision symptoms. One of the rare side effects was vision problems and I decided I couldn't live with that side effect. Thankfully, I was on the medication just long enough to get me through Easter weekend (and the egg hunt)-- something I couldn't have done without help.

During this time, I returned to pilates. I hadn't been since before my surgery. Two days later, my back pain was unbearable. The shooting stabbing pain was just as bad as my neck pain had been, but not as bad as petocin created stage three labor pains (just for comparison). I now had a new friend in the form of narcotics. And another excuse to stay away from the gym. (i didn't need anymore excuses!) Time, rest, stretching and a chiropractor have all helped my back pain go from unbearable to challenging. And 29 days out of the month, I don't need extra pain meds. I am thankful to avoid surgery. So far, I only have dengenerative disc disease and a small buldge. Nothing like my neck.

BUT, during all this, my joints continued their journey of pain. Some days the NSAIDS and narcotics masked the pain, some days they did not. I started a new med called methotrexate and a steroid to help 'bridge the gap' till the mtx started/starts working. I take a low dose sterioid in the morning and my methotrexate on Wednesday nights. It gives me bad nausea and a horrible headache. I have a 'fog' on Thursdays and have to battle getting out of bed and staying out of bed. (this is my fog day-- and woo, i don't like thursdays- except i look forward to the weekend!)

So, I write this today, and even though my hands hurt I wanted to share this with you. If you've been around me in the last year and have thought, dang she's lazy- you are partly right and partly wrong. Yes, I'm lazy, but I'm also being challenged every day, every moment of my life with my new friend, arthritis. Whether it be Rheumatoid Arthritis or Ankylosing Spondylitis, I don't know. It may take years to find out. I'm not sure which I'd rather have. Neither of course. Thankfully, both are treated the same way-- with steroids, DMARDS, and biologics (you see commercials for these all the time--humira, enbrel, etc.)

I don't want sympathy or really kind words, just prayer and understanding. If you are are a Hazelwood or Ward family member and are experiencing anything like this-- get checked out or if your child complains-- listen to them. This stuff runs in families.

We all go through hardships and journeys throughout our lives and sometimes they make sense, but most of the time, they do not. I don't know why things turn out the way they do. I know this is not a punishment from God, nor it is an opportunity that God gave me to minister better. I do know that God has already given me the tools to face this without fear, with peace, and with love. I'm slowly learning how to care for my kids with this challenge and it is a challenge. They have to do things that most kids don't-- like get a sippy cup, a lid, a valve and the gallon of milk they desire or pull a chair to get the crackers off the fridge. I should be able to do those things, but some days-- I just can't.

Some days I can only go to a store for about 15 minutes before I get so tired or hurt so much, I have to leave. Some days it is a HUGE victory when I can take my kids to the park or take them shopping without help. I NEVER imagined that life would be like this, but it is.

So, I finally conclude this and just say thank you in advance for your prayers. Thank you in advance for your understanding-- not just for me, but for the millions of others that deal with some sort of chronic pain. I've almost let this define me, but I refuse to. I will, however, slowly begin to speak out and share my journey with others. I've written this today for myself and for you. It is helpful to tell my story to those I've kept it from and I hope it is helpful to you.

love you all,

grace and peace,

Deven