Monday, October 28, 2013

babies

I have never been one to dream about having kids or even feel particularly drawn to being around them.  many of you know, I'm an old person kind of person.  I have always felt drawn to being around the elderly and have geared my life and my career in that direction - the opposite end of the spectrum, some may say.  being pregnant has never been something I've looked forward to or even given much thought to.  raising a family has always been a vague thing that I know may happen in the future, but by no means has ever been a priority.  pretty much the only thing that John and I disagreed on while dating was the fact that he wanted five kids and I wanted zero.  in the spirit of compromise, I remember saying something like I'd be ok with two or three.  maybe.

but a funny thing happens when someone tells you that you probably "can't" do something.  most people get a fire in their belly and a resolve to prove that someone wrong.  I can't say that's exactly what happened with me, but having Dr. J tell me about the difficulties, even the impossibilities, surrounding pregnancy and child rearing when you have rheumatoid arthritis made me reflect, search, think, and pray. a lot.

pregnancy with RA is something you have to plan for, calculate, discuss extensively with your doctor, and is essentially void of all mushy love excitement and romance.  instead of just John  and me deciding we'd like to have children, it'll be John, me, and Dr. J.  how romantic.  I'll probably recite some poetry and light some candles.  maybe even bring some chocolates in a box shaped like a heart.

you see, the medications I'm taking are nothing to be messed with.  they're potent and they are toxic.  those are good things when you're trying to battle an autoimmune disease, but not so good when you're trying to grow a tiny human being inside of you.  these meds will either deform or abort any little guy or gal that tries to take up residence in my uterus.  these meds also take a year to completely leave my system.  that means we need to tell Dr. J a year or more before we try conceiving and then wait another year for my system to be hospitable to a baby.  or, if I get pregnant before having this well-calculated conversation, I rush to the hospital to be pumped full of another medication that will flush my system of the toxic medications.  I'm thinking of including that cute little story in the baby book.  maybe even include some snap shots of my panicked face or the IV stuck in my arm.  ah, memories.

and then there's the inflammation.  even on my current medication regime, I still have flare ups.  take away those meds and I may go back to square one.  if I can't even comb my own hair, how am I supposed to lug around a belly with a baby in it?  my knees are pissed at me already.  and then, how am I supposed to get up in the middle of the night to care for a crying baby?  will I be able to hold my little darling while I feed him or her?  will my fingers be able to manage securing a diaper?

so, while I may never have dreamed about having kids and I don't even volunteer in the church nursery or know how to talk to my friends' toddlers, I do want to have a family with John and I do want to experience the miracle of pregnancy and giving birth.  the female body is badass, and I want to be a part of that.

just another reason to praise and thank our sovereign and gracious God.  He knows what the future holds, how many children are in it, and exactly how this whole process is going to go.  hallelujah! because I'm sick of worrying about it.

ps: and yes, we are open to adoption.  we'll let God make the call on that as well.

Sunday, October 6, 2013

medication dependence

I have become even more painfully (literally) aware this past week of how dependent I am on prescription medication to control my rheumatoid arthritis.  this past week brought two changes in my medication schedule - one purposeful, one accidental.

on Tuesday I cut my Celebrex intake in half, per Dr. J's instructions.  I have been on Leflunomide for over a month now, and it should be doing its part to stop the disease progression by now.  if it is, I shouldn't need to take so much Celebrex to control the pain.  Tuesday also marked the first time I didn't take my Methotrexate on schedule.  I get my medications through my insurance's mail order system, and it failed me this time.  my refill wasn't here on Tuesday, so I missed my weekly meth pill popping.  my local pharmacy was able to help me out with a "bridge," or a one time, one dose refill that would tide me over.  the meth returned to my system Thursday evening.

so here we are on Sunday.  the morning stiffness has been out of this world the past few days, reminding me of those mornings seven months ago when I couldn't even throw back the covers to get out of bed or walk down the hall to get some coffee.

now I'm no doctor - I leave the doctoring to the good Dr. J - but I have to believe there's a connection here.  my medication regimen changes and boom, I'm back to square one.  well, it's a little better than before treatment started, so maybe square three or four.

what I do know for sure is that these pills are what's keeping me going.  as annoying and sometimes disheartening it is to choke down dozens of pills and shell out the cash for them, they have given me back a quality of life that was lost completely when RA started kicking my butt.  and by butt, I mean joints.

I wrote some weeks ago about wanting to be medication-free.  there are many RA sufferers out there who are able to control symptoms with dietary changes and different vitamin and supplement cocktails.  sure sounds good to me, but it just might not be my reality.  definitely not now, and maybe not ever.  so, dreams and courses of treatment and visions for the future change, and that's ok.  the naive RA patient I was months ago did not know what the only slightly less naive RA patient I am today knows -- that doctors are smart, Dr. J is the man, medications can be life changing, and sometimes it's worth a more intrusive course of treatment so that I can throw back the covers to get out of bed and walk down the hall in the morning to get a cup of coffee.

hats off to all you med-free RAers.  and my heart goes out to those who can't seem to find a medication regimen or other course of treatment to their symptoms under control.  this is a cruel, cruel disease and also a very unique one.  keep on keeping on, my RA friends.

Tuesday, October 1, 2013

Sjogren's syndrome

Praise the Lord, my emotional well-being is back on track and I've regained my positive outlook.  I really fell into a slump after experiencing so much pain, swelling, and overall scary symptoms in New York.  But God has been oh so gracious, blessing me with support, encouragement, and reminders of His faithfulness and sovereignty all over the place.  I am one thankful gal!  He is with me through all things and gives me amazing folks to lean on, confide in, and just laugh with because it hurts (here's looking at you, Jennie).

Moving on.

One of my latest concerns is a little autoimmune disease called Sjogren's syndrome.  It's actually not little at all, but instead extremely annoying.  At least it's annoying and not crippling like the RA.  Anyways, Sjogren's syndrome is an autoimmune disorder that impacts moisture-producing glands, such as the eyes, nose, and mouth.  Many people with RA also experiencing Sjogren's.  As if we didn't have enough to worry about.

A few weeks ago I was walking through the halls of the local senior independent living community where I work, and it felt like I was walking through a wind tunnel.  To my face, at least.  My eyes were extremely dry and sensitive, the Sahara desert relocated to the inside of my nose, and my mouth felt like I hadn't had a sip of water in a year.  Allergies, I thought?  Seriously, denial and an everything-but attitude when it comes to autoimmune disorders is the way to go.  Wink, wink.  Then I remembered the pamphlet Dr. J gave me on this silly sounding disorder.  I flipped through it, did some online research, and then called Dr. J's nurse.  She gave me the deets, told me they'd add some Sjogren's panels to the blood work I have scheduled for later this month, and then sent me another pamphlet.  Education, people.

The fact of the matter is that Sjogren's can't be cured, like RA, and the only thing to do is manage symptoms.  You can go the prescription route and get fancy (and expensive) lubricants (that word is gross), or you can just go to the CVS down the street and grab some dry mouth tooothpaste and mouth wash and all the saline spray and eye drops you can find and start a continual flow into your face.  I chose the latter.

In addition to the uncomfortable nature of Sjogren's, it kind of makes me look like a crazy person.  I have to squint when I walk because of the wind tunnel feeling, and the redness from the dryness makes it look like I've either been crying or am allergic to everything.  I also blink a lot.

Now you're all caught up on the health soap opera that is my life.
Thanks, once again, for the support and encouragement and thoughtful questions!

PS: Venus Williams also has Sjogren's syndrome, so we're as good as best friends now.  I'm sure I'll start getting invitations to play tennis with her any day now.