Friday, December 27, 2013

Humira Woes

Well Dr. B decided that Embrel wasn't doing enough and to change to Humira.  I was good with that. I'm good with whatever at this point...though I can't believe I say it.

Humira has done nothing.  At all.  This has been a hard holiday season because I have felt so terrible.
The itchy rashes did not go away, but in fact, got worse.  The pain and stiffness are worse.
I can't sleep through the night.  Either because of shoulder pain or because I'm just awake.
I can't sleep in any position because of neck pain..and shoulder.
I am sooo tired and need a nap to make it to a 9pm bedtime.  Actually 2 naps would be awesome.

Soooo, I go back Monday.  And I don't know what I hope he will say.
Go back to Embrel?  That's an option.  But it wasn't fantastic anyway.
Up the ante and try something like Remicade?

And where will it end?
Will I get to a point where nothing works?

I just don't know!!

Monday, September 9, 2013

It goes like this.

Never ever EVER tell someone with a crappy scary disease that she is in the condition she is in now because of unwise medical decisions she made like 2 years ago.  Not only is it mean and thoughtless but it sets in motion a panicky meltdown equal to the early days of diagnosis.

So yeah, I'm done with Maggie.  And it is one appt that I can scratch off my to do list forever freeing me up for truthful and helpful appts that might actually shed light on this mess.

Oh AND.  When you're watching tv and one of those commercials come on for some drug that makes the patient look well and fine but then rattles off a looong list of side effects, don't judge.  People that say they'd rather have the disease than the side effects have not felt the desperation that caused the decision in the first place.

Big waste of time (again) that ended with her telling my daughter how lucky she was she has her Daddy's bones but my temper.  Another indication that she knows nothing about Rheumatoid Disease.
And Lane does NOT have my temper.  She's far too sweet.

So tonight I am fuming mad.  And scared.  And mad that I'm scared.  And furious that I could let her bring me to a point like this when I KNOW that its a lie and she has NO IDEA what she is even talking about.   And why am I so scared again all of a sudden after feeling ok with it for so long?   Where do these emotions come from?

And I wanted to call Tracy b/c she understands the crap that Maggie dishes out.  But I figured she had better things to do on a Monday night than listen to me fall apart.  So instead I opened my Bible.

Now there has been this idea rattling around in my head....I think it was some sort of Pinterest picture that said something like "Today instead of asking God for what you need, thank Him for what you already have."
At first that might sound like good advice.  Or maybe it sounds too packaged and cutsie....which is what I thought.  But then again, thankfulness is a good thing and maybe I spend too much time asking begging God to take this away.

But here.
"But I call to God and the Lord will save me.  Evening and morning and noon I utter my complaint and moan, and He hears my voice."  Ps 55:16-17

HE HEARS MY VOICE!!  Even when I'm coming undone.

Now I don't think the Psalmist is saying that he was only griping 3 times.  But more like an ongoing plea for mercy to the God that doesn't get sick of hearing about it.

Praise God that he is always the same...especially when I'm not.

Tuesday, May 21, 2013

Paleo Experiment Here I Go

So I played around with the Paleo diet for about a week.  Just got my feet wet and decided I could live with it.  But then I ate 1/2 of a vanilla ice cream cone and it was all my man's fault.  That meant I totally screwed up counting that week so I'll start with this week as week 1

The tricky part is adding the auto immune protocol which eliminates nuts and eggs.  Potatoes too, but I can't tell that I've ever had problems with potatoes so I'll just go light on those.  Same thing with other night shades.

I REALLY want a cookie!!  Some grain free egg free cookie maybe.....probably not.
But oh well, it's just for a short while to see I will have any significant improvement by my next appt.

I'm adding consistent exercise.  Walking mostly, but also squats, sit ups, and so forth.  I'm working on push ups but my wrist can't support much weight at this point and my elbows are both intolerant.

So here's the low down to chart from the beginning....

Problem areas..
slight wrist
left hand but mostly left index finger
right hand is worse but I can usually make a pretty good fist sometime during the day even if its not until later.
feet are sore after sitting for any short period
I can walk forever but my knees can't do a lot of hills

Sleeping pretty good and I'd like to gain about 10 pounds.

Thursday, April 25, 2013


I hate appt days.  And I kinda like them at the same time.  I hate them because there is plenty to hate.  But then again, I want to see if Dr. B agrees with my opinion on how it's going.

My opinion:  Doing good.

His opinion:  LOOKS like I'm doing better.  Xrays don't agree.  But b/c I am feeling pretty good most days, then maybe the Xrays will look better next time....which will be 6 mo instead of 1 yr.  It may be time to switch meds and up the ante.  Expensive injectables are next.

Soooo the Xray thing kinda freaks me out.  But since he put my appt back at 4 months and not sooner I feel a little better.  My inflammation markers were down and my WBC was acceptable but not great.  I'll take it. He's not changing my meds yet so that's good.

No shots.

4 months gives me lots of time to pray for more healing.  I'd really like to have better Xrays next time.
I'm thinking of trying full-blown paleo for 4 months.  I can tell that eliminating grains is a good thing.

Monday, February 11, 2013

My Paleo Experiment

While I haven't had huge flares, I certainly have felt better than now.  
That usually sends me into serious search mode looking for anything that I haven't already tried. 

Enter the Paleo experiment. 

I read quite a bit about the Paleo diet and all it can do for autoimmune diseases.   It sounds sensible and even way better than where I was.  And for me, it would actually mean adding in something.  READ: FREEDOM!!    So I gave it about 2 weeks adding in beef, chicken, and eggs. 

It didn't work. 

I feel worse than when I started.  Also I feel that heavy feeling after eating meat that I forgot about when eating vegan.  No thanks. 

Sooo back to the drawing board.   And my vegan fare that I grew pretty comfy with. 
While I don't care so much that it didn't work, I DO care (a lot) that both Maggie AND my acupuncturist are not practicing anymore.  They have helped me more than anyone else in these 2 years and I will miss them so very much.   And I'm ok with where I am now, but if I let myself think about it too much....I'm not ok thinking about the future without them.  So I try not to go there. 

As it is, I feel like I achieved a measure of success (though not remission) with my natural methods since I have not yet had to go on the "severe" drugs even though my blood work clearly shows I could easily be there. 

But God knows.  So I'm looking forward to whatever better solution He has in store. 

Sunday, December 30, 2012

Shouting It From The Roof Top!


After an entire month of horrible flares, all of a sudden they stopped.  Almost overnight even.
I am feeling better than I have in 2 years!

I had a dr. appt this week and I don't go back for ....not 8 weeks.  Not 12 weeks.  But FOUR months!!  I've never gotten to go that long before.   He gave me a shot in my finger and I'm still trying to decide if it's going to help enough.  It's a little better, but not what I hoped for.  Still there's time, so we'll see.

I can snap with both hands, raise both arms over my head at the same time, and sleep in any position I want.   My left hand almost feels normal and my right one is pretty good.  I can make one tight fist and one decent fist. 

Why the good news?  What changed?  The only thing that I've added is acupuncture.  But I don't attribute it to that.  I count it all to the glory of God.  Every single joint.  Every movement.  Every good night's sleep. 

Thank You God!

Sunday, December 9, 2012

This has been a rough spell to say the least.  December has not been my favorite.
I'm not sleeping great and have been up a couple of nights heating up my rice bag for my shoulder.  LOVE rice bags!

I taught CT to work on my wrist.  Well, I taught him as far as I know how just guessing how Maggie really does it.  It worked last week and kept me out of a brace.  Getting dressed is hard.

But...and I hate this....I was hurting bad enough to take the full dose of Arava for most of this week.  We'll see how this affects my hair.  And I can't say that it has helped a ton, but then again idk how much worse it would be w/o it, right?

I'm thankful that I'm still at a point of being able to push through it.  I have good energy during the day and I'm still doing whatever I want.  For the most part, I think only the ppl I'm closest to can tell....I hope anyway!