Growl......

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.

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. 

Shouting It From The Roof Top!

I AM FEELING SO MUCH BETTER!!

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!

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!

Well THAT Didn't Work

2 weeks off my meds and I was doing ok.  So I went 3.

And that was NOT ok.

It didn't help.  I'm still losing gobs of hair.  And now I'm hurting too.

So I started back on my meds.  1/2 dose like he suggested.  Although, if it didn't work then I might as well go back to full dose I'm thinking.  I'll give it a couple more days and see if the flares clear up.  Obviously, I'd rather stay on 1/2 dose, but I'm to a point of needing to feel better.

My thoughts:  Arava did fine for me for 6 months without hair loss.  3 weeks out of my system and I'm still losing hair.  So it must be something else.  Time to check hormones.

I went back to my wrist brace but today Maggie worked on it.  She's amazing.  She really does wonders with my wrist, and shoulders, and feet, and everything. My wrist isn't great, but it is up to about 65% and that's workable without a brace.  Unfortunately, she's moving a little farther away.   Still doable though.

AND there's a naturopath is town too.  Hmmmm.........

Here's the low down:
Mornings hurt more than anything else.  But the rest of the day hurts too.  My feet hurt and I'm slower and hobble a little, but not too bad.
I wake up in the night when I move a certain way that hurts my wrist or elbows.
I'm going to push for a shot in my right middle finger in Dec.  It's gone too long...well over 6 months.
Emotionally I handle it pretty well, it's just a constant disappointment but there are worse things in life.
I'm glad it's me and not someone else.

I HATE appt days.  Especially when we have to talk about the hard things.  Like why all of a sudden I'm in competition with the family dog to see who can shed the most hair at once.    Sigh.....

But it wasn't that big of a deal.  He doesn't know either.  It could be my meds.  Hair loss is a known side effect of Arava.  It could be the fact that I was pretty sick, had vein procedures, planned a wedding, didn't sleep much, and moved all at the same time. 

Problem is that I'm at the end of the road as far as oral meds go.  Super expensive injections are my next option and the Arava has worked well for several months.   Not wanting to jump ship on that just yet, he suggested I stop my med for 2 weeks then start back every other day.  Good plan!  I've been doing the every other day for about 2 weeks and can't tell much of a difference. 

Then he said something that got my attention.  Kind of in passing he says, "You have a thin frame, it could be that 20 mg was too much anyway. 

AH HA!  So I got to thinking.  When I was sick I lost about 10 pounds.  I'm still there.  A move, a wedding, no sleep, and over medicated seems a logical reason to loose hair.

2 weeks.  We'll see.....

I'm so hoping that October turns out better than September!
I'm pretty much over this annoying cough.  Yay!

But I'm still hurting.  un-yay.

AND I started losing a ton of hair out of the blue.  I have no idea why.  And that pretty much freaked me out.  Soooo, I decided to cut my meds back a little and up my vitamin E.

My sleep is not stellar.  Today I slept all the way until 6:30 and that was sleeping in big time.  I've been up around 4:30 every day this week.  (???)

I don't know how long I can cut back on the Arava.  Especially with a move and wedding in the next two weeks.  We'll see...