Wednesday, May 15, 2013

Day six The Hardest Thing

My days are longer than most.  That is okay.  I am okay with that.

What is the hardest thing I have ever done?

Come to terms with the fact that I may never enjoy a pain-free day, a short jog, surf, hike or bike again.

And I did.  I came to terms with it.  I accepted it.

It may seem to you reading this now, knowing that I was able to come through and enjoy most of those things (pain-free day aside) that it wasn't that bad.  It was.  It might appear that because the 'worst of the worst' only lasted 18 months and then the second 'worst of the worst' only another 18 months after that it wasn't really that bad.  Let me assure you that it was that bad.

I put everything on the floor of my pergo-covered home.  Diapers, clothes, wipes, snacks, etc.  I would scoot around with Lily on my stomach.  During her naps I would lay down flat.  ALWAYS.  I would never clean or craft or anything else.  Often I would play with her while I lay on the couch.
Lily slept in our bed. . .until she was 3.  I couldn't get up to nurse her,  and by the time she was weaned she was so used to it and I was so so so so so tired all the time, it wasn't worth the effort to retrain her.

When Lily was 18 months old I was watching a friends kid.  I was (of course) sitting on the floor with the kids as they played.  The other child stepped across my outstretched legs and little baby Lily cried out in alarm:  "DON'T TOUCH MAMA KNEE!"

Sheets touching my knee would send me through the roof.

I couldn't drive for several weeks.  I could not move my foot from the gas to the brake.  Even after I could drive it was excruciating.

I took a stroller everywhere.  I had someone in Paia once tell me off for putting my kid in a stroller while I shopped.  I was a bad mom apparently.  My mothering guilt was already so sky-high, I never took Lily out in the stroller again.  I trained her to sit on my shoulder bag and cling to me like a baby koala.  The pain was out of this world.  Lucky she was light.

I had 2 different doctors on 2 different islands tell me I was a 'medical mystery'.  One gave me a Rx for extra-strength vicodin (I didn't know it came in extra strength either!) the other game me Rx for gabapentin.

I did craniosacral, acupuncture, rolfing, dieting, creams, vitamins, stretches, praying, MRI's, X-rays, and lots and lots of research.

I lived in Hawaii but I couldn't do anything.  Even when I made myself, I could barely enjoy it.
I was depressed.  I wish I would have taken something for that.  I think even the docs on Maui could have given me something to help with the depression.

I went through all the classic stages of grief, some took a long time, some not as long and I finally accepted the pain as part of my life.  I knew I would never run, climb, surf, play like I used to but it was okay.  I learned to sew and do a few other little crafts and I tried to find some other talents or interests to pursue.

 I am still not where I was before I had Lily.  I don't expect I ever will be.  I still have pain as a constant companion but he usually remembers to use his inside voice these days.  I have learned how to keep him quieter and I have learned to live my life with him as a cameo rather than a director.  I don't think that because I am running a marathon in 3 days it makes my past experience any less real.  I honestly believed, no I KNEW, I would never feel this good, and coming to that acceptance is the hardest thing I ever did.

A little note on running. . .even though no one cares. . .

I have been reading some running blogs lately and they often refer to runs as 'good' or 'bad' depending on a lot of factors like time, how they felt in general, speed, etc.  Sometimes I want to laugh, sometimes I want to roll my eyes and sometimes I want to shake them depending on a lot of factors on my part.  Mostly, though, I just count myself lucky because while I have had blood blisters, joint pain, sore muscles, seriously slow times and even thrown up along the way, I don't think I have ever had a bad run.

***Please note that I use the word 'run' is a very generous adjective for what I do when I lace up my Saucony's.  

I should also note that it is only because of the sincere caring and brilliant mind of Dr. Vonk coupled with fairly strong weekly injection (yeah for me!) and a daily pill along with a strict gluten-free diet (and a string of other small habits, I will list if anyone cares) that I am able to perform my life at the level that I do now.  My disease never went away, and it never will and because of that I am grateful that I had to accept it at it's worst.  I know it could go there again.  In fact, I am told it is likely that it will at some point.  But that is okay.  I have already accepted that full bore pain.  I have already accepted not doing all the physical things I love.  Any day that I CAN do those things is just a bonus.  I have a strange feeling this super good attitude might go out the window and I will have to repeat the whole 'acceptance' process again if things ever get really bad again.  I guess we will have to see.


Julia said...

Wow, so they still have no idea? Amazing how far we've come medically, yet still have so far to go. I'm glad you're able to . . . do things again. I can't think of a more elegant way to put that. I had no idea about any of this, makes me very grateful!

Erin said...

I've heard pieces of this before ( Hawaii), but you played all of it so close to your chest that I would never know or guess. I didn't know it was just as bad with Noli. In fact, I asked you about it and you kinda blew it off, saying that it was better than with Lily because you knew what to expect so could adjust for it. I wish I could have been there for you. I'm sorry.

Meg said...

Julia, they do know what it is now. It is Rheumatoid Arthritis. The docs in Hawaii just never could figure it out. Basically if it doesn't show up exactly on the bloodwork as it says in the book they are stumped.

Erin, it actually was a lot better after Noli. I was on a steroid as soon as she was born and had several cortisone shots to the knee until she stopped nursing. That helped a ton. It took me over a year to wean off of the stupid steroids but i think it was worth it, I never could have juggled two kids without it. And, no need to be sorry, I did play it close. I was scared and embarrassed. It feels good to write about it now, though. I am a lot more confident in my health now. I don't feel so vulnerable.

Claudia said...

Meg, you are amazing (I knew that before this blog post though). I didn't know you were going through all that, and I'm sorry. I'm glad that you've been able to figure out what works for you now, and that you will be able to do this amazing thing next week. I'm so happy and excited for you!

Ashley said...

Can't wait to hear about your marathon! You are the bomb dot com!