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Thursday, May 8, 2014

I wasn't sure it had been worth it.

If you're "just tuning in" this post may leave you wondering what the heck I am rambling about, I hope you take the time to go back and review my earlier posts so you can catch up with our story.

I wasn't sure it had been worth it.

I had spent most of the night researching; I read everything I could find about MAC (Mycobacterium Avium Complex).  I read the bad and the ugly; there was no good to be found.  When I first started reading I wondered out loud how in the world my mother could have contracted an infection that was mostly associated with HIV/AIDS; the answers was embedded within the first couple of paragraphs.  The words “ubiquitous”, “opportunistic” and “immune-suppressed” glared at me as I began reading; once exposed (which could have been from a number of sources), mom hadn't stood a chance of the infection not invading her severely suppressed immune system.  Although the many years of various treatments for moms’ Rheumatoid Arthritis had given her a number of years of (at least some) relief, at that moment I wasn't sure it had been worth it.

I have heard for years that Rheumatoid Arthritis won’t kill you, but the complications, not only from the disease itself, but also from the many drugs used to combat it, could.  I finally fell asleep with the computer in my lap and had fitful dreams about what life would have been like for my mother had she let her over active immune system continue to cripple and ravage her body vs what it was like now as she fought for her life (and limb) following years of suppressing the immune system to lessen the effects of the symptoms.  I can tell you that both scenarios fell in to more of a nightmare category.  I woke less than three hours later knowing it was time for me to practice some suppression of my own; I needed to devote my time and energy to things I could control.

I laughed at myself as I tried to make a list of exactly what the “controllable” things were in my life; my paper was blank.  Who was I kidding?  I knew who was in control and it certainly wasn't me!  I prayed for guidance and the next thing I knew I was doing my laundry; funny, that hadn't even crossed my mind as needing to be on my “to do” list.  By 8:30AM I was digging around for quarters to finish drying my last load of clothes when my cell phone rang.

My mother doesn't usually call me early in the morning unless she really needs something (she knows how much of a morning person I am NOT), but her voice didn't sound urgent when she said; “I didn't wake you, did I”?  I told her I had been awake long enough to have done three loads of laundry and asked if everything was OK; mom said everything was “fine”.  I asked how her breakfast had been; “fine”.  “How did you sleep”? I asked; “fine” was the answer.  I could tell by the way she was answering that something was NOT fine and wondered if she was going to make me ask 20 questions before telling me what it was.

I got to about question number twelve when the dryer buzzed and mom said “I’ll let you go honey, I really didn't need anything”.  I told her I would be there within the hour and asked if she needed anything from the store; she didn't.  As we often do, before we actually hang up the phone, we chatted about several more insignificant things and then I asked one more question - lucky number 13, “Did they tell you what time you were going to get that shower you've been waiting for”?  Bingo!  I guess I now knew where I was being guided next!
These things are great
in a pinch!

Since mom had been told her shower was going to be put off for yet another day, by mid- morning I had given mom a good sponge bath and used a “no-rinse” shampoo cap that I had picked up at the drug store to at least get her hair clean enough to style.  I nearly dropped the styling brush when mom said, “Well, I guess nothing has grown from the culture, huh”?  Mom knew that I checked for anything new in her medical records almost daily and I often knew the results were available even before the doctors did.  I hadn't yet decided how or when I was going to tell her about it, but I guessed the “when” was NOW and the “how” was with honesty; the problem was I was terrified and I didn't want to terrify her, so I fibbed…… a little.

I told mom that something had shown up on the culture, but that I didn't know what it was, “We’ll know more when we go to the doctor next week, I’m sure”.  I don’t know why I always forget that my mother knows me so well; she wanted to know what my “research” had turned up about whatever it was.  I reminded myself that honesty was the way to go and related to her the information as I understood it.  As I was telling her about the various symptoms and the many possible complications, the past couple years all the sudden made sense.

Unfortunately one of the characteristics of my mothers’ Rheumatoid Arthritis has been the lack of clinical symptoms needed for proper diagnoses or other medical conditions according to medical guidelines; she might display one or two symptoms, but three are required.  From what I had been able to understand in my one night of research, the MAC could be responsible for a number of afflictions mother had suffered the past couple of years; her lungs, her heart, her knee, her back, her eyes and ears – there was some evidence supporting the idea that all we've been through could be attributed to this horrible infection that I’m certain would have never been found had we not left the beautiful valley we call home in search of answers.


Tanya said...

Thank you so much for sharing your story. Until I started treatment for RA I was never sick, now it is literally one infection after another. I do hope she has recovered from this infection.

healthcare hostages said...

Tanya, thank YOU for taking the time to read our story. I do hope you have a good RA doc following your condition & watching for some of the negative impacts that some of those treatments can have. Unfortunately, moms' RA doc just kept adding more & more meds when she started feeling so poorly........had this infection been caught sooner we might have avoided some of this horror.