What Pain Can Look Like

pain meds

Soon, I celebrate an anniversary of sorts. Not the kind that you really want to celebrate, but a definite life definer. I was diagnosed with a chronic illness almost twenty years ago. Autoimmune diseases take all shapes and forms and my particular one, rheumatoid arthritis, doesn’t always reveal its affects on the body to the unobservant. To many, I look healthy and fine when many times I am anything but the picture of good health.

With an arsenal of tools from pills to wraps and ice packs like others with chronic pain and swelling issues, I spend much of my time in recovery or preparation for the absolute essential activities of life. We miss out on many of the everyday moments that we, given the choice, would want to experience. No one chooses to spend 50% or more of their life resting or sleeping. But at times, this reality is part of the life of an autoimmune patient. We miss friends and we lose friends because, often, we can’t participate so we struggle with loneliness and depression. A light switch didn’t turn our memories off. We remember and miss our old selves and the abilities we once had, the activities we once enjoyed, and, in my case, the cute shoes I once wore. Real energy sacrificing effort is required to keep from becoming marginalized. Energy, I, often, only have in limited supply. Adapting to a new self or a changing self, as in my case because of my particular disease, takes time, love, and patience on the part of the patient and those that care for them. A somewhat normal and generally pain-free life is possible when the right combinations of drugs and/or therapies are working.

Several months ago, I took an incredible test. Incredible, in the sense, that science and technology has actually developed the ability to determine the activity level of my disease by markers in my blood. Knowing my score on that test made decisions concerning my medication easier for my doctor. The test also comes with an incredible price tag for a blood test, but in the scheme of all things medically related not that bad. The Vectra DA test confirmed what I and my doctor have suspected for some time. The drugs weren’t working. My activity level is high.

I’m not surprised the test came back high. I’ve been dealing with swelling, joint pain, brain fog, and incapacitating fatigue. Some might say they didn’t know. I didn’t look like I felt bad. I have to admit that’s part of my ruse and plan. Maybe, I should share more how I’m feeling but experience has taught me differently. (And that issue, my friends, is for another post.) Forgive me for the missed calls, the condolence and congratulation cards that didn’t get sent or are terribly tardy, and the lack of presence. Please don’t mistake my bad manners for a lack of love, care, and support towards you. I may not be there but my prayers have been.

And if you haven’t realized how I am : How do I make my public life look normal? I choose to be happy and joyful. I attend the things and see the people that are essential to me. Then, I go home and collapse. Somedays, I just can’t go. Those days are the toughest. So for now, I’m saying goodbye to Remicaid and hello to Humira for the next six months. Then, I take the test again and we see.

Blessings,

Mimi

February’s Viewpoint And Lessons Learned

Hey!

I had a rough February.  Actually, the entire winter has been difficult.  Case in point, Sunday was near 80 degrees and yesterday, I drove to bible study with snow flurries.  Crazy!!  These extreme weather changes have caused my rheumatoid arthritis to flare.  I spent a good portion of February laying on the sofa dealing with flares and with stubborn hip bursitis in both hips. My viewpoint for most of February was this angle.

feb 1

I did learn a few lessons I’d like to share from my February viewpoint.

  1. Ice packs are your friend.
  2. Receiving physical therapy is not wimping out.  Don’t grin and bare it.  Get treatment.
  3. Being cooped up in the house makes raking the yard sound like fun.
  4. Renovation really seems to creep along when you’re staring at it e-v-e-r-y day.  I’d equate it to watching a pot boil.
  5. I need to dust more often.
  6. Ask for more prayer when you need it.
  7. I need interaction with people so I don’t verbal vomit on the first humans I finally see.
  8. When I hurt physically, it’s really hard to read and think.  I know this, but it’s still something worth remembering.
  9. A meal given, even when it’s not a devastating physical illness, shows true friendship.
  10. Be patient in affliction

The last lesson was one I know but hadn’t ever given considerable thought.  The lesson came from a bible verse I was memorizing.

“Be joyful in hope, patient in affliction, faithful in prayer.”  Romans 12:12

I was fighting and struggling against the constant pain and the up and down fatigue caused by my rheumatoid arthritis, the lack of a good night’s sleep, and the domino effect that is created when one area hurts, then another is affected and begins to hurt, and the cycle goes round and round. This little verse really struck a chord with me.  God used it to teach me and I wanted to share what I learned about it with you.

Patient was the word that caught my eye and grabbed my attention in the verse.  I did a little detective work into the original language to discover what word choices Paul used when writing this verse.  He chose to use a verb tense that indicates the action is to be done continuously.  Meaning, I’m to continually be patient in affliction.

The Greek word for patient means; to remain under, to endure, to sustain a load of miseries, adversities, persecution, or provocation in faith and patience.   I was surprised to discover that the word does not refer to patience towards others.  A different word is used for that meaning.  Therefore, Paul was not talking about the problems I have with others when they cause me misery or frustration.  This patience needed is to be applied toward another source.

The root of the Greek word for affliction means to break, to crush, to press.  Symbolically, the word means grievous affliction or distress, pressure or burden on the spirit and is related to narrowness and the idea of confined spaces.  I can attest that affliction feels exactly like this definition.   The visual imagery of confined spaces for me was powerful when associated with affliction.

Restructuring that phrase into my own words, I recognize that I need to remain under God’s loving care when a crushing load of misery is pressing on me in order to sustain continuously in faith and patience. I can redirect my energies and struggles to Him.  I can continue to honor God in the manner in which I endure.  As I was studying this verse, another one from Matthew 11:28-30 also came to mind.

“Come to me, all you who are weary and burdened, and I will give you rest.  Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls.  For my yoke is easy and my burden is light.”

I can continually sustain through my difficulty because He is there with me to help carry the burden of it.  I need only be patient in affliction.

Blessings,

Mimi

Here it is…

Here it is…

Hey!
I kept waiting and putting off posting in the hopes that things would turn around but unfortunately, I’ve been having one of those weeks.  I’ve felt awful and have struggled to find energy to blog this week.  I really feel like I’ve let you down not having something wonderful (or otherwise) to read.  I almost chose not to write at all but I stopped and thought that if I’m going to write about the good things, maybe I should write about the bad, too.  Maybe writing about the journey will help someone else.  
So, here it is… Arthritis is yucky.  

Winter is really hard on me and this one, in particular, has been difficult.  The weather has been like a roller coaster ride which has really affected me.   My joints are swollen, some are red with fever and I feel a bone-weary tiredness from which no amount of sleep can cure.  When I taught bible study this week, I had such a hard time focusing on leading discussion.  I came home feeling like a failure to God and my ladies because I wasn’t able to give 100%I know in my head that was the tiredness talking but my heart feels different. 

I hate the disease’s imposition and interruption in my life.  I don’t want it to take over by keeping and stopping me from doing what I’m capable of doing.  I want to draw a line in the sand and say, “No More!”  Then, the disease takes control and lays me out.  

I take an IV every six weeks.  The day wipes me out since the procedure takes a good portion of the day.  I take my blanket, my pillow and my book, sometimes my Honey Do and I brace myself for those needles that I still hate to this day and then I pause and think … I’m grateful for medicine and the quick work of needles in the skilled hands of the nurses.  I’m reminded in that moment that others have a far more difficult health journey than I, but the moment is hard when the pain, stiffness and fatigue peakThen, the true test of gratitude is at its toughest.  

I remember the day I read this passage; 

 “Some time later, Jesus went up to Jerusalem …in Jerusalem (is) a pool, which in Aramaic is called Bethesda …Here a great number of disabled people used to lie—- the blind, the lame, the paralyzed.  One who was there had been an invalid for thirty-eight years.  When Jesus saw him lying there and learned that he had been in this condition for a long time, he asked him, “Do you want to get well?”” Sir,” the invalid replied, ” I have no one to help me into the pool when the water is stirred.  While I am trying to get in, someone else goes down ahead of me.” Then Jesus said to him, “Get up! Pick up your mat and walk.” At once the man was cured; he picked up his mat and walked.” John 5:1-9 NIV Bible

 I realized I didn’t want my life to be defined by my disease.  I didn’t want to be an arthritic woman.  I wanted to be a woman who happens to have arthritis.  I want to say, “I can do” rather than ” I can’t do.My hope and prayer is always that my journey and struggle would be a blessing to someone else
Thank you, dear readers, for your patience today in letting me share the bad.  

Blessings,

Mimi
 

“When the sun was setting, the people brought to Jesus all who had various kinds of sickness,
 and laying his hands on each one, he healed them.”  
Luke 4:40  NIV Bible