Video Blog

Day Ten and All is Well

I got to the point that I thought, "well, this is now my life. It's all downhill from here". And then I crammed two thick needles of every thick liquid into my upper leg.  That was ten days ago.  I have tracked how I'm doing on the medication in a logbook:

• Day One: 
• No change
• Day Two:  
• What?  I'm walking with little pain?  What's up with that?
• Day Three: 
• I just spent two hours cleaning the garage.  Bending is an issue so I'm being careful but wow, I can actually grasp things with my hand.
• Day Four: 
• I got right out of bed today. No need to go back to bed. Energy level is up, pain levels are down, significant reduction in swelling.  Hip and lower back still hurt
• Day Five:
• Tired.  Exhausted. Can't think straight.  Brain fog.  Going back to bed.
• Day Six:
• Still having bad hip and lower back pain - could be the kidney stones moving but i doubt it.  I can't bend over and when I do it's right to the floor I go.  Tired.  So very tired.
• Day Seven:
• Joint stiffness lasting all day.  Tired but energy enough to focus on some tasks
• Day Eight:
• Foot hurts like hell.  Hips and lower back have seen absolutely no change, in fact, I wonder if since the inflammation has gone down, more nerve and bone are exposed and that is causing more pain?
• Day Nine:
• Again spent most of the day in bed.  Went to visit friends and got very stiff and started limping again. Foot got heavy.  Pain increasing all over the body.  
• Day Ten:
• And here we are.  Ten days.  I went back to bed after seeing Robbie off to work as I usually do but got up two hours later.  I could have slept till noon, easily, but I was actually able to force myself to get up (the cup of coffee helped, too).  

Each day I do a mental systems-check.  Today's results:

Toes: swollen, red, but able to wiggle them ever so slightly which is something new in several years.  Still, painful to put on and take off shoes and socks - forget it - wow those hurt coming off.

Ankle:  weak, crunching when it moves, not very steady on my feet

Legs:  weak and I don't trust that they are going to be there for me to keep me upright.  I spend time using walls and furniture when navigating around the house.  Not a nice sensation

Tailbone:  wow - en fuego - seriously painful and hips.

Hands: major reduction in swelling - grasping ability adequate; functional

Shoulder:  easier to reach above my head today - I supposed that means I can start dusting things higher than my nose now.

Eyes:  scratchy, dry, blurry...just not pretty

Voice: this ever-present "frog" in my throat, swallowing is intentional and deliberate, not automatic like it should be; tried singing a few notes - sound like I've been smoking for thirty years and my once 3+ octave range is now sitting at a VERY difficult one octave...

Today is a Diamond

There is a John Denver song my mother used to quote all the time.  Of course, in my Mom's style, she wouldn't speak it, she would always sing it.  It's called, Somedays are Diamonds, Somedays are Stone.  Today...it's a diamond and its about time as the past couple of months have been very rocky!

I took my Cimzia shots on Saturday, and on Sunday I felt okay.  Nothing major.  Then I woke this morning and without thinking I immediately got out of bed and was halfway to the other side of the house before I realized I was in very little pain and was walking fine.  I had to laugh a bit, actually, and wonder if I was having a dream.

I still have pain but I've already seen a good reduction in swelling and mobility in my hands.  I'm cautiously optimistic.  This is supposed to get me through an entire month before my next dose so we'll see what happens.

As I listen to this song and focus on the diamonds vs stone I am reminded of the immense pressure that is involved in making a diamond.  Did you know that it takes up to 1 Billion years for a diamond to form?  And scientists believe they don't come from coal as we have come to accept (http://geology.com/articles/diamonds-from-coal/).  But the pressure that it takes to form a diamond is incredible (yes, I'm also reminded of that great line in Ferris Bueller's Day Off but I'll let you reference that one in your own minds).

We've all been under pressure throughout our lives and there will be other times.  And I am convinced, as I have always been, that it is part of the refining process.  When the pressure is relieved for a bit we have a little more clarity, a little more shine to our spirit.

One of the great pressure-releasers in my life has been the love and support of people.  Through the years they have changed names and faces and some of them have gone and some of them remain.  I recently reconnected with someone who was very dear to me during the last half of the nineties.  What a blessing to reconnect with her and know that our mutual respect and love for one another is still as strong as ever.  It is those simple acts or reaching out that bring me more comfort from the pain than medications can.  Reach out to someone today and share the love with someone, won't you?  who knows - maybe through that simple act you'll turn someone's stone day into a diamond day.

Life - Dismantled

I recently read an interesting article on chronic pain.  It attempted to relay to people the differences between chronic pain and the pains experienced when growing older, or temporary pain.  I don't try very hard to explain to people what it means to be in the type of pain I experience.  Generally speaking I try to keep my mouth shut and act my way through it as if all is fine. But truth is, the pain varies from day to day and through-out the day.  From the inability to brush my teeth to being bed-ridden, it varies with the changing winds and weather. But one truth is, well, painfully clear:  it's always there.  And then there was this quote:

"...unless the pain is severe enough to completely dismantle the person's life, it is far from the same experience, physically and emotionally"

As I speak with my friends around the world who live with chronic pain, there is one particular idea we all agree on.  We don't want to tell people about our pain - we simply want others to stop telling us things that aren't true.  "It will get better" or "hang in there, things will turn around" is akin to telling a dying patient on their deathbed, "you've got a lot of life still in you" or "keep fighting, you're winning this battle".  It's an insult to the one receiving your words.

The people around us, the ones who care and love, are also experiencing a certain type of pain. It's the pain of being a witness.  Those very close to us see the day-to-day attacks on our bodies and our minds and are so frustrated knowing they are powerless.  Communicating through words is what we do yet finding those right words is not always easy.  All to often we choose the wrong words, thinking at first that they are offering encouragement and comfort.

So what are we to do, then?  Remain silent?  Go on as if nothing is happening?  Of course not. Both sides need to come to an understanding that our language is limiting us.  But we can take a few extra moments to come up with softer words and words that reflect truth and not false hope. We need to understand that for the life of someone living with chronic pain, their life has become completely dismantled.

Some things that people in chronic pain wish others to know:

1. Please understand that being sick doesn't mean I'm not still a human being.
2. Please understand the difference between "happy" and "healthy".
3. Having chronic pain means dealing with multiple issues, many of which are invisible to you.
4. Chronic pain is variable.
5. Understand that sometimes getting out and doing something does not make me feel better, and can often make me feel worse.
6. If I say I can't keep walking/riding/socializing...I mean it.  I'm not being mean, I'm just 'done'
7. If you want to suggest a cure to me, don't.  Remember that I'M the one who wants to get better and have spent countless hours researching and talking to this specialist and that one.  Chances are if you've heard of it, so have I.  If something out there works, we will know about it.  Thanks to social media, those of us in chronic pain are very well connected
8. If I seem a little touchy or moody - it's because I am and if you tell me to snap out of it I'll probably mentally snap on  you.
9. We depend on healthy people to be around us.  

Here are some helpful things to say to people who are being torn down every day with chronic pain.

1. This must be so difficult for you, I can't imagine.
2. I wish I had something to say that would help/take away the pain but i don't.  But I am here to listen.
3. I hope that today you are feeling as well as possible.
4. You are in my thoughts and prayers.
5. You look good today, but how are you actually feeling?
6. I love you.
7. Do we need to cut our visit short so you can rest?
8. Would you like to hear about this crazy adventure I had yesterday.

Oh and one more thing:  we still have a great sense of humor.  We don't necessarily appreciate jokes at the expense of our chronic pain...but we do love to laugh.

A Temporary SetBack

It started the night before.  I'm never sure if it is a sore throat, an ear ache/infection starting, or the arthritis.  

Rheumatoid arthritis affects the cricoarytenoid joint.  When I first learned this I was absolutely devastated.  I had just completed a concert and was overjoyed that I was actually able to make it through the rehearsals and the show.  The show was a success and it was to be the mark of a major vocal comeback for me after being away for almost thirteen years.  But the very next day I thought I had a sore throat or an ear infection or that I had perhaps just a really tired set of vocal bands from the concert.  I was careful to sing correctly and take care of my voice (I'm a classically trained singer so I have the right tools and I know how to use them).  But no training at all could have prepared me for the diagnosis.  The cricoarytenoid joint is the joint between the cricoid and arytenoid cartilages in the back wall of the larynx.  The Cjs are rotated by the vibration of the vocal cords, thus changing the tone of the voice ¹  This can cause hoarseness, a sense of pharyngeal fullness in the throat when speaking and swallowing, pain in the ears and dyspnoea (difficulty in catching your breath). 

Today I'm battling these symptoms but stubbornly treating it like an ear infection. I'm taking in more fluids and zinc supplements and warm tea and putting myself on vocal rest.  I had to cancel future engagements and let down some ticket holders.  I cancelled anything that required singing or talking and sadly said "not now" to a chance to sing at a church of a college friend.  I had to say no to an opportunity to preach recently as well.  You just never know how much you depend on things like your voice until that is taken from you.  I could teach a course on this now.

However, what I need to do is come to grips with this and seek the advice of a specialist and touch base with either my current vocal coach or my undergraduate vocal professor who, to me, is the guru of all things vocal.  This disease has so far stolen my enjoyment of walking, dancing, organ playing, and now seems to want to take any hopes of a revitalized singing career away as well.  Now, many of my friends and family will say things like, "it'll get better" or "stay strong it'll all work out" but the truth of the matter is, there is NO CURE for this damned disease.  We have medications that we're trying that will mask it and take away a few annoying side effects but remember that when you get rid of a side effect you typically trade one for another (you've heard those annoying Rx ads on tv that go on for ten minutes discussing the side effects).  

Today I was to start my cimzia injections but now I need to wait another week.  It must be taken on Saturday as it is timed with my mid-week injectable methotrexate.  I'm waiting because I'm not 100% sure if what I'm experiencing is a sore throat, ear infection or swollen Cjs.  I can't start this medication if I have any type of infection going on.  All I know today is that I'm angry - very angry - at the thought of loosing yet another love in my life - singing.  But also focused on not giving up and praying for a miracle.

We all experience set-backs.  Some are temporary and, as this quote says, launches us into something great.  Some are permanent and some even lead to death (which we all hope is also launching us in to something great and wonderful).  I would love to hear from you on how you can now look back at a set-back and see how it launched you into something wonderful.  Please share with me on either facebook if that link is how you got here, or an email (info.orcvirtual@icloud.com) or by posting a response to this blog.  

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1  (Stringer SP, Schaeffer SD. Disorders of laryngeal dysfunction. In: Paperalle MM, Shumrick DA, Gluckman Jl, Meryhoff WL eds.  Octolarygology, edn 3. Philadelphia: W.B. Saunders, 1991:2257-72)

If It Doesn't Challenge You - It Doesn't Change You

I slept in until around noon, waiting for the nausea to get to the "I got this" stage.  It's a battle between my stomach and my head as to who will win the great dizziness race.  Usually my head wins, even now feeling like it is swimming inside my skull.

I saw this quote and it motivated me today to get up - shower - get dressed - and go out.  We spent time walking in the mall, having lunch, and doing some light shopping.  I spent a good portion of the day reaching up and holding either my forehead or the back of neck to maybe settle down the swimming sensation I had from the meds.  It's a mental thing but sometimes it actually works.

I WANT to lie down - to just ride it out the easy way and sometimes I have no choice.  Sometimes my body shuts down and I have no other option but to lie down but today I pushed it.  Robin was constantly checking to see if I needed to return to the car or return home.  But I kept pushing it. Right now as I type and look at the computer monitor I feel dizzy and I'm sweating.  I'll go lie down for a bit now, start to unwind.

But today I faced the challenging side effects of methotrexate and I feel I have won.  But how has it changed me?  It gave me a little extra dose of that "I can do all things through Christ who gives me strength" feeling.  As long as I do my part, I know the Spirit will do the rest.

May All Be Loved...Healed...Sheltered...and Free From Pain

Every Wednesday night its the same thing. I generally forget (conveniently) that it is Wednesday and then around 9:00 p.m. Robin informs me that its shot night.  AHHH!!!!  I have to fill a syringe from the bottle and inject it into my leg.  They say you can use the stomach but yeah, no WAY am I going to do that.  People tell me its no big deal and painless but I'll stick to the leg, thank you very much.

I'm in a good mood today. I've been listening to Michael Buble and Frank Sinatra and singing at the top of my lungs.  I sat at the piano and made up a few songs and played some old ones.  I spent time with the cats and enjoyed the sunshine on my face for a brief few moments.  My pain levels are tolerable but in 12 hours I'll be curled up on the couch in the fetal position with a bucket next to me just in case and a cool cloth on my head. Robin comes out and checks on me frequently during the night and he knows that getting up in the morning is going to be really hard for me.

I'm still waiting for my blood work to come back that will tell me if I can start the new medication this weekend.  I'm nervous because I have no idea how my body will react.  

I tried calling my Dad throughout the day today.  He has no idea of my battle and he doesn't need to know.  Besides, he will forget anyway - Alzheimer's will see to that.  But I like to hear his voice the day I take my medication.  It grounds me and prepares me for the next 42 hours.  

As I take on the next day I am reminded that the day after is not far off.  I will drink lots of water, keep my head down and try to watch movies most of the day if I can.

May all be loved.

May all be healed.

May all be sheltered.

May all be free from pain.

May I be loved.

May I be healed.

May I be sheltered.

May I be free from pain.