Did you know that the Lupus Foundation supports a wolf sanctuary? I was actually going back to refresh my knowledge regarding the behavior of wolves, when I was pleasantly surprised by the discovery.
When I was diagnosed with Systemic Lupus over fifteen years ago, I learned that the word 'Lupus' was the name of the doctor who isolated the condition, and I was a little surprised and offended that the word actually means 'wolf'.
Since that time, I have made my peace with the characteristics of the elusive wolf.
The wolf is loyal for life, and their means of communication are uniquely their own. I can relate to the similarities of my condition.
My wolf is only trying to protect my body from potential harm. My wolf communicates with my body in several different ways. All of which range from uncomfortable to extremely painful.
The butterfly is the symbol for The Lupus Foundation.
I have a butterfly tattoo that reminds me of my new beginning as well as my survival..
When I was initially diagnosed, I took my time embracing all of the feelings that are present when you realize that you have a medical condition that has no cure, and will forever be a part of your life. I was not afraid, but I was sad. I knew enough about the condition to know that my lupus was considered 'moderate' by normal standards.
My actual diagnosis was almost by accident. I was 47 years old, and any symptoms I had were attributed to my aging process. I was blessed to have a watchful doctor who seemed determined to find out why my ANA readings were off the charts. It was later that I felt relief in finding out the real cause of my fatigue. The achiness of my joints was something I had chosen to ignore.
He informed me that I probably had the condition for several years before the diagnosis.
During the first few years, changes in my life resulted in extreme levels of stress. Since I happen to have a peaceful and laid back personality, I shudder to think how difficult it would have been for a hyper personality.
I woke up every morning exhausted.
I felt as if I had been running a 15 minute mile over and over again.
The stiffness in my body was actually painful.
The screaming of my joints moves from one spot to another.
The achiness never goes away.
I have not slept eight hours in 20 years. I am supposed to sleep nine hours.
I actually wake up every two hours; every night.
As bad as my pain often becomes, I fully understand how blessed I am. My vital organs, such as my kidneys seemed to be spared the 'protection' of my self- appointed ' protector'.
Even before I shared my condition with my family, I became active in the Lupus Foundation.
I trained to become a facilitator for a support group, but after making the four hour one-way drive alone, on my return the following day, I ended up in ICU. Driving has never been an issue for me, but the life changing events in my life at the time, only added to the stress. I drove myself to the emergency room. Both of my doctors wanted me to quit my job, but I could not do that. I had to be able to take care of myself. I quite simply had no choice
I had to stay off work for six months, but thank God, I was finally able to go back to work.
My 35 year marriage was over and my life had completely changed forever.
I learned to love myself, I tapped into who I am, and my body quieted down enough for me to breath again.
The howl of my wolf was not silent, but much like a deep, attentive whisper.
I could finally hear my voice..
During that time, October was Lupus Awareness Month. I decided against starting a support group, but I did participate in the Lupus Walks. It was nice to be around people who could understand this journey. Honestly, not many people do understand; not even family.
Up until a few months ago, I seldom read blogs focusing on Lupus. I realize that even when I write a piece about illness, I focus on the generalities of chronic illness.
I am forced to admit that I still had lingering feelings left over from years of programming. I have put together several forums addressing the genuine, often gut wrenching feelings, of a person who has a serious medical condition.
Shame and Guilt
For me, the shame and guilt seem to go hand in hand.
I have always been active. I was not interested in running marathons or competition weight training. However, I have always preferred running over walking because you could quickly get the experience over with. The problem arose when my spouse told me that running a 15 minute mile was not good enough; I needed to strive for a 5 mile run. A serious head game, that had a few lasting effects..
I was toned and my weight was perfect, but I simply did not understand the truth.
I take full responsibility for not being connected to myself.
Since society has given people the right to make rude comments about another person's weight, it is often pointed out to me that my lupus would probably improve if I exercised more.
I no longer explain that each person's experience is uniquely their own.
When I went to the gym 3-4 days a week and walked 3 days, my pain and fatigue remained the same. Only the stiffness did seem to lessen.
Therein lies the guilt.
For the last couple of years, my fatigue and level of pain has become more pronounced.
This is to date, my longest flare. I have declined the use of steroids to control the pain.
I can function well, but the tiredness can be very emotionally frustrating. I learned how to pace myself years ago, so my life is a blessing. Challenging, but no less a blessing.
There are still many days when I am so very tired of being tired. There are just as many days when I wish I had a switch to turn off the pain.
Overall, you quickly learn to fully appreciate the 'good' days.
I would love to be able to once again walk every day...
Hopefully, one day soon.
Last week, I read a blog post written by a Lupus patient that struck a chord. She was married to someone who was not willing to pay for a drug that could ease her pain. She has insurance, and would be provided with a reduced rate because she had participated in a trial. He said no.
I admire her because she did not sugarcoat her feelings.
She was not having a pity party, she was stating her facts. There is a distinct difference.
I have met few people who use their illness as a weapon or a means for attention.
Yes, I am blessed.
I have children, grandchildren, family, and friends who love and support me.
Many, many people have to face this journey alone.
I have a very special gift.
I spend my days with my 2 yr.old granddaughter.
She is the youngest of my four amazing babies.
She is intelligent, beautiful, feisty, and gentle and loving to her Nana.
I am her Nana; she is my Twinkle.
I love children and they seem to love me. But...
This baby seems to be instinctively tuned in to how I am feeling.
She picks the days for us to dance, sing or play ball. Or, the days when I simply need her to snuggle in my lap as I read her a story, or she watches her favorite television show
On the days when I suppose I am moving slowly, she paces her steps as we descend the stairs.
She tells me she loves me several times a day.
When she is close enough, she will sometimes lean over and gently kiss my cheek; without saying a word.
She makes my heart smile.
I have shared these types of inner feelings with very few people.
I always seek and embrace the positives of life.
However...
There is no weakness or negativity in being ill; there is always strength, whether it is visible to others or not.
So, my life will go on.
My faith, and God's grace and mercy, keep my hopes and dreams alive.
I am finishing up a play that I plan on presenting in the fall.
I love and enjoy this life that God has blessed me with.
I can smile, laugh, and be thankful.
I can also accept the fact that sometimes, tears are both cleansing and comforting.
I accept my feelings, whatever they happen to be.
My wolf and my butterfly have made peace with each other.
They are both are part of me..
Thankfully, God has always been, and will always be..in control.
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