Monday, May 16, 2011

Not an Option...Yet

As parents of children with significant needs, we've learned to adjust to the lack of sleep, the endless hours lost from work due to doctor appointments and such, and the stares of people who don't understand. But there is one thing that I, and some of my friends, are finding hard to adjust to.

As we lift, roll, turn, and steady our children who are unable to do those things for themselves, we are wearing down our bodies. At first, it comes as a general ache, a dull pain that over the counter pain relievers can help. Then it becomes more severe, and our doctors prescribe muscle relaxers, prescription pain killers, and such. But what happens when those things no longer work?

That's where I am right now. That's where my friend, Lynnette, and several others are also.

I have carpal tunnel syndrome. Lynnette has a problem with her bicep tendon. Another friend has intense back pain. And all our doctors recommend surgery. But surgery is not an option.

My surgery for carpal tunnel can't be done arthroscopically. It would involve an incision from the middle of my palm to about 4 inches down my inner arm. It's my right hand. The hand that hooks up Ashley's G-tube for medication. The hand that draws the medication into syringes. The hand that helps feed her - wash her - dress her. A surgery that would put me out of commission just isn't an option.

The same goes for Lynnette. She, like me, is the sole caregiver for her daughter, Brooke. She is the one that feeds her through her G-tube - the one who changes her trach - the one who hooks her up to the ventilator at night - the one who lifts and turns and bathes and changes. Surgery is not an option.

Yes, I realize that we may get to a point where there is no other option but surgery, but we hope and pray that we don't get there. In the meantime, we live with the pain, knowing it won't go away but hoping it will.

The people who don't really 'get it' say isn't there someone who can help you? Well, if there are, we haven't found them. People come and go in our children's lives, but their committment is to a job - 8 hours a day and then a trip home. We're just lucky if they show up for the 8 hours (which they sometimes don't).

Family? - nope, not in my case or Lynnette's case. Hiring a nurse? - nope, already losing so much time from work that money for nursing care isn't there. I just don't know the answer.

I'm not looking for pity, and I know Lynnette and my other friends aren't either. We deal with enough pity already. But if you do have some emotion to spare, understanding would be good.

Just in pain - just sharing - just wanting a little understanding...


mommy~dearest said...

I have CRPS (Complex Regional Pain Syndrome) and totally "feel" you. Pun slightly intended.


Anonymous said...

It's the suckiest of damned if you do, damned if you don't situations.

Do cortisone shots help? I have tarsal tunnel (carpal tunnel in my ankles) and cortisone helps a lot, as do orthotics (they brace for carpal tunnel, don't they?).

I hope you feel better soon; emotionally as well as physically. You're an amazing mom, and even though it hurts, it's worth it in the end.

Molly said...

have you tried kinesio tape? My chiro used it on my for my crazy messed up feet.

Rubypat said...

I can empathise with you - I have just found out that I have two full thickness tears in two of my shoulder tendons, fraying in another, and the biceps tendon is thinning. Luckily I still have a full range of movement, although it is painful, and am booked in for a cortisone injection at the end of this week. I am lucky in that I can access respite care for my totally dependent daughter (8 year old) for the weekend so that I can rest up, and then will request additional hours of home help for the next couple of weeks so that tasks such as showering, dressing, etc, are taken care of.
I have put off a lot of self care because I cannot/do not wish to be out of action for a long time. I am just hoping that I do not require surgery at this time; however, continued lifting is not likely to prevent further damage. I wish there was some scheme for you to get some help in your home, as living with pain is no fun.