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

I’m A Statistic

Hey!

I’ve joined the gazillion of others that have caught the flu.  I did get a shot but this strain of the virus outsmarted it.  I’ll post when I can.  I wish health and well being for each of you, friends.

Blessings,

Mimi

“Heal me, O LORD, and I will be healed; save me and I will be saved, for you are the one I praise.” Jeremiah 17:14

Leaves Of Three Or Is It Five?

Hey!

Today’s post idea comes as a response to help my friends who are in danger of unwittingly becoming the victims of a horrific case of poison ivy.

I’ve been the sufferer more times than I can count of a case of poison ivy.  The itching, oozing, crusty puffiness is miserable.  All the ointments in the world only alleviate the symptoms.  They don’t really get rid of it.  The dreaded affliction must run its course.

The worst case I had was when I went to summer camp. One night, our camp counselors wanted to give us the quintessential camp experience so they built a big bonfire for us to roast marshmallows and sing camp songs. Unfortunately for me, the tree limbs they burned had poison ivy on them which I inhaled in the smoke.  I developed a systemic reaction and became covered inside and outside of my body with poison ivy.  Misery — Pure Misery.  I had allergy shots after that experience and avoided the plant like the plague.

The best way though not to get a case of poison ivy is to recognize it and avoid it.  Poison ivy has three leaves.  A very common saying is Leaves of three, let it be” and “has been cited in print since 1907” according to this site I found.   The leaves can be very small when they first unfurl in the spring but can become quite large like the one below which is about the size of a salad plate.

poison ivyPoison ivy is a vine that will go up trees and send out runners across the ground.

poison ivy 2Virginia creeper is often confused with poison ivy but virginia creeper is not poisonous.  Although, the berries that form on virginia creeper are toxic.  Virginia creeper has five leaves and like poison ivy, the plant sends out runners and climbs trees, fences, and structures.

virginia creeperVirginia Creeper working its way up a tree.

virginia creeper 2Poison ivy on the left and virginia creeper on the right.

poison ivy and virginia creeperAdditional information

  1. Article from the CDC
  2. Article from Mt. Rainier Cabins
  3. Pictures of Poison Ivy, Poison Oak and Poison Sumac
  4. Photos of the rash
  5. Information about burning Poison Ivy

Remember ‘leaves of three, let it be ‘  —  I hope you have an itch free summer!

Blessings,

Mimi

“For the time will come when men will not put up with sound doctrine. Instead, to suit their own desires, they will gather around them a great number of teachers to say what their itching ears want to hear.”  2 Timothy 4:3 NIV Bible

 

 

 

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