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...

The Spoon Theory

Please read this if there is anybody in your life that deals with chronic health issues.  It explains things so well to better help you understand what its like!

A bit better!  I'm not coughing near as much and I had a lot more energy today.

And wonder of wonders!  My wrist DID clear up on its own!  It's not perfect but it's good.

My hands and shoulder hurt.  And I'm back to the point of going to bed wondering what tomorrow morning will feel like.  But its not so bad that it's slowing me down and only slightly to the point of favoring my shoulder.

I had another vein procedure done on my leg.  Oh, how I hope this doesn't trigger anything else.  It didn't last time so I'm hoping I'm good for this time too.

I changed my vitamins and added Horse Chestnut and Olive Leaf Extract.  Olive leaf is pretty powerful stuff but I haven't taken it in about a year.

I also realized that I've been lazy with my food prep.  Relying on my GF vegan cereal for breakfast, falling to canned beans, and skimping on my salad veggies.  Time to step it up!

The other day I was in a moment of thankfulness and remembering how when we were moving into this rent house just 7 months ago there was a question in my mind if I would be able to fully participate.   The thought of that was so foreign to me b/c I have been doing so well.  I never doubt if I'll be able to do anything.

Then there is today.  And I'm reminded anew what disability means.  Dis-ABLE to do something.
It's been building up for about a week.  But this morning I work up with both shoulders and both elbows hurting.  Sloooow moving.  But it was nothing compared to my wrist.  And I cried my first RA related tears in a long time.

Shoulders and elbows tend to be a quick healing flare for me.  But the wrist is a downward spiral to shots.  And there is so much you can NOT do with a bad wrist.  It controls your whole hand.   So then I was back to needing help pulling food out of the oven.   And using 2 hands for a job that should require one.  Not wanting it to go farther I wanted to see Maggie to hopefully avoid a shot.  Not a chance.  She was booked tight.  Since a wrist flare has never gone away on its own I'm guessing I'll be texting her again tomorrow.  Sigh.....

Why??  I'm always looking for a reason.  What has set this off all of a sudden?
I've been sick for awhile with this icky cough that most of my family has been down with for the last month.  It's getting better but it's lingering.  It's my first sickness in 2 years and I'm guessing its triggered my RA.  At least that's all I can come up with.

I am trying to focus on thankfulness.  I have tons to be grateful for and I don't want to be caught up on what I don't have.  I wonder though if this is as good as it gets.  I feel like I've plateaued and I'd like to get to the next level of wellness and mobility.  But I do remember what it used to be and I'm so thankful to be here instead of there.   My next appt is in 2 months and I wonder where I'll be by then. 

~I have very few limitations.

~I don't need help with many things.  Maneuvering something heavy with one hand is nearly impossible ....like draining a skillet or pouring a full gallon of milk.  But it's easy enough to do with 2 hands. 

~I don't think twice about driving or walking or anything that used to be a big problem.

~I still find myself smiling when I turn on my lamp with one hand or pick up my Bible, or make my bed.

~I hope I never forget and always appreciate these little things I used to take for granted.

~I can snap with my left hand.

~My wrist continues to feel better.  Maggie's non-steriod shots don't work as quickly as the steriod ones.  This is good though. 

~I am praying that I can wear my ring on my right hand soon.  I'm to the point of asking Honey if I can get it re-sized.  I really don't wanna go there but I love that ring...the first one he ever bought me.  But for now I'm so thankful to wear my wedding rings.   My right fingers are ridiculously swollen so that contines to be my biggest problem.