Thursday, July 5, 2012

July 2012

A brief background for you before I get into the real motivation for this post. 

I have been off benlysta.  April 29th I learned I had bronchitis.  That afternoon I had symptoms of a kidney infection.  Sure enough I had one.  My doc thought the antibiotics would talk care of the infection, but two weeks later I still had it, but no symptoms.  She told me she is not too concerned but to follow up with my primary.  Since my schedule was so hectic I put it on the back burner.  She didn't sound too concerned so I wasn't either.  Then as I went in for my next infusion I got a call saying that because I had this infection I couldn't get it.  Great. 
So I saw another doc, got another antibiotic and this last Tuesday saw my PCP and was all cleared.  I partly wonder if he cleared me because I was having some serious issues with my ankles and he was confident it was Lupus... and at those words, I burst into tears.  I had finally seen the benefits of benlysta without a doubt in the world.

The last few weeks have been a consistant reminder of the role Lupus plays in my life.  My pain level was high, every inch of me ached.  Anytime someone touched me for a hug or something I seared pain through my body.  Chest pains at night that would wake me, exhaustion so strong that getting home from work was the only desire of the day so I could go to bed.  And guilt.  Guilt that I couldn't be a part of my family.  Guilt of not wanting to take my son to his class, guilt of letting him play video games the moment we walked in the door.  Guilt that my husband had to make and clean up dinner.  Guilt that staying awake after my ten year old went to bed so I could spend time with my husband was just too unbearable. And guilt that pain medication was the only thing I desired to make it all numb.


A feeling I haven't really felt this strongly in several months. 


A feeling I was choosing to feel.  But couldn't make a different choice for myself.

It's my fault.  I put off the appointment.  I was lead to believe it wasn't a big deal so I just didn't care.  I have learned that lesson a very important lesson.

But in all this guilt, yesterday may have been the biggest smack in the face for me.  I couldn't keep up with others around me.  I struggled with being in the sunshine. I struggled with standing for long periods of time and finally I had to distance myself from the fun and go inside to watch from the window.  I try desperately to disappear without being noticed, because I don't want a big deal made.  I don't want the fun to stop just cause I can't be there.  I ended up dozing on the couch to catch up on those elusive spoons I have been searching for the last month.
But it was the first time in months I really felt like I had pushed myself way too far. I sat on the couch looking out the window realizing that benlysta really did make a big impact on my life.  It really gave me more time with my son, more time with my husband and more time with my friends enjoying life.

Today I was studying Ruth for a weekly bible study I am in, and there is apart where the author talks about her friends pain:

"I can cope with the pain for the most part, but the despair of feeling forgotten by God's healing is overwhelming". 

To me, I don't feel forgotten by God, I feel that God has chosen this path for me and to me that is more overwhelming than to think He forgot me.  I know He didn't.  But I do consistently wonder why I was chosen this path, and these challenges.  But a paragraph later she writes "God love endures forever" and when I read that my mind is at ease.  Oh I still wonder why this is my cross to bear, but I know that God still in control, even through my pain, feelings of defeat He is there. And in my lowest point He is holding me.

Thankfully my rheumy can get me in tomorrow for my infusion.  I am ready for it.  And if the side effects return I am ready.  My body is reacting well to this medication and I thank the Lord for this gift he has given me. 


Anonymous said...

The way you describe feeling is how I feel most of the time, I am curenetly on Prednisone and CellCept, but I am now considering asking to switch to Benlysta.

Sara - apartamentos en venta said...

Very good article, your story with feeling good post

jennifer white said...

I just read some of your updates. I have exactly the same issues. It is hard to explain to someone who can't feel those little pre stings of pain when you know something is about to hit you hard.The depression will knock you down to. I get on my computer to read and correspond with all my lupie friends. Thanks for sharing. take care

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