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!

Friday, November 23, 2012

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.

Thursday, November 1, 2012

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.....

Sunday, October 7, 2012

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...

Tuesday, September 25, 2012

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!

Friday, September 21, 2012

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.

Friday, July 13, 2012

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 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. 

Thursday, July 5, 2012

A Good Appointment

I saw my rheumatologist today and I'm glad to say that we are finally in agreement! 

He said...

You're blood work looks perfect.
The swelling might continue to go down.  (I hope so!)
Keep doing what you're doing.
Come back in 9 weeks. 


Tuesday, July 3, 2012

Joints? What joints?

This has never happened.  Well never as in the past year and a half since my diagnosis.  I woke up and I didn't notice how I felt. 

Like I didn't even think about it. 

I got up to make Honey's breakfast and I didn't notice my hands until I was in the middle of it! 

Usually I will immediately make 2 fists to see how close I am and how much it hurts.  Then I will manipulate different joints to see what the day will bring.  Sometimes I even do this in the middle of the night. 

So to wake up without even thinking about it makes me feel so NORMAL!! 
Praise God!

Monday, June 25, 2012

RA I hate you. 

I hate the way my hands look. 

I hate the fear that sets in.  .

I hate the tears.

I hate doubting myself.

I hate wondering what the morning will bring.

I hate dressing around my abilities to maneuver zippers or buttons.

I hate not being able to do everything I want to do.

And I especially hate the fact that my gratitude for my good health is completely overshadowed by my bad health. 

Saturday, June 16, 2012

I Can Play!

I played wiffle ball with my family tonight!!

You never realize how much of your body goes into a game like that....or kickball or skating or soccer or whatever.   I am super thankful to be feeling this good. 

The particulars....
Wrist is sore when moved to the extreme. 
I can make a left handed fist in the morning.
My right hand is not great this week. 
I can jump, run, and stand on my tippy toes.
I've been walking nearly every morning, stretching, lifting, crunches, and squats

fish oil
Vit C, D, and E
Milk thistle
PB8 (probiotic)


Wednesday, June 13, 2012

So after a week or so of going back to my regular foods I was feeling much better.   And still am.

I did have an issue with my wrist that was getting pretty bad.  Maggie worked on it for me but couldn't do anything.  However, the morning after I could actually move it a little more than the night before!  Oh happy day!  So she worked on it every day after VBS until it was finally at a place where she could put a shot in.  She does not do steroids and I appreciate that. 

That all meant that I did not have to go to TX to visit my family in a brace.  My wrist is not perfect, but I would call it very good.  With time I'm thinking it'll get better.

I'm exercising a ton more.  I'm going to ask Dr. B if there is some case study I could be involved in that deals with nutraceuticals or exercise. 

Monday, June 4, 2012

It Didn't Work

I guess if I could just live without food I'd do pretty good.  I thought the chicken day would work out ok but when I woke up this morning my hands were terrible. 

Very disappointing.

I didn't just pick chicken to start with out of the blue.  I was trying to go closer to a candida diet and also eating for your blood type.  Thus chicken.  I don't even like chicken that much.  I especially don't like it now. 

I suppose the die hard would just place it on the suspect list and go to the next food.  But since my first attempt bombed so badly I'm pretty discouraged with the whole thing. 

So I give up.

Back to my vegan-ish fare which is a very comfy place to be. 

Sunday, June 3, 2012

The Results Are In

Let me start by saying that I'm very impressed with how well I feel.

It's not perfect.  All the inflammation is not gone.  My wrist is still flaring. And waking up on day 4 was actually a little worse than day 3.  But here's the thing....this is the best I've felt in a loooong time.  I really think that if my cysts were gone then I could make tighter fists.  The cysts seem to be holding everything up.

I also noticed more popping yesterday.  I don't like that.  Popping doesn't hurt, I just hate the sound of it. 

So it wasn't the miracle I was hoping for but it sure did help.  A lot.

The next step is trying a rotation diet.  Today I ate chicken.  All day.  And I still feel great. 
My man is not happy with the results and wants me to get my meds back on board before I start to go downhill.   I took them for 3 weeks and nothing changed so that is not my favorite idea.  But I try to listen to him I started them back up. :-(  My doc thinks it might help with the cysts.  Well see.  If so, I'll be a happy girl. 

A thought:  I hardly slept at all last night.  I woke up at midnight and stayed up til 5am.  That never happens.  It takes so very little change in my body to affect RA.  So that might be the reason that day 4 was not as great as day 3.  (?) 

Saturday, June 2, 2012

The Home Stretch!

I'm hungry, grumpy, snappy, and about to cry. 


Not perfect, but great.  And I'm so thankful. 

I'm officially done but will carry it over to the morning b/c the mornings are the true test.  Then my man told me he'd bring me some chicken in bed for breakfast.  Is he a love or what?  I'm just wondering if he knows how early breakfast might be! ;-)

We spent the afternoon touring a farm.  I was outside, in the heat (which wasn't so hot), and on my feet the whole time.  Usually this would be a situation that would bring some big swelling.  Temporary and not too painful, but big.  Today my hands were very minimally swelled by the whole thing! 

My wrist is my worst joint right now and that surprises me.  But even that is ok.  And when I say worst, I mean that extreme bending brings mild pain.  Not that it's slowing me down or putting me in a brace.  There is no noticeable swelling.  Maybe the morning will bring even more freedom. 

I am perfectly aware of the temperamental disease that RA is.  People can do great, even go into remission for years only to have it come back when you're least expecting it.   I am holding all this loosely and just concentrating on thankfulness knowing that tomorrow could bring something entirely different.  As for now I am praising the Lord "who heals all your diseases" (Ps 103) and still asking for a miracle. 


I went to bed last night praying for a miracle.  That the Lord would indeed bring me out of this with a mighty hand and an outstretched arm.  As as far as food goes, that the boundary lines would fall in pleasant places.

6 am on the morning of day 3.  Every morning starts the same.  I immediately move certain joints to see how bad it's going to be today.  But today!!......I can make a fist with my left hand!  And not just any fist but a TIGHT fist with strength!  My right hand makes a closed fist, not as good b/c of the cysts, but even so the swelling is not first-thing-in-the-morning-swelling, but the much better swelling of the middle of the day.  My left wrist is a bit sore (that's been going on for about a month now) but still nothing like it usually is first thing in the morning. 

Guess who got woken up to celebrate with me?  I couldn't resist.  And if you're reading this, you're lucky I'm not calling YOU and waking you up to hear about it too!  I'm SOOO excited. 

And that's with storms thrown in the mix, ya'll. 

Here's the site I'm following where I'm getting most of my info....

Other than waking up shaky and obviously being hungry, I feel great.  I have good energy and a happy mood. 

3pm is my ending time of the 3 day fast.  I was going to carry this through to the morning but I'm waking up shaky so I'm considering eating dinner.  Chicken.  I bought the Smart Chicken instead of my usual $.88/lb chicken from Aldi. 

As I incorporate foods, one of my main objectives is also eating as clean as we can possibly afford.  And closer to the source. 

We have a farm close by that sells fresh cow and goat milk, goat cheese, butter, cream, eggs, and other stuff.  Today we are taking a tour.  Doesn't that sound like fun? 

Friday, June 1, 2012

Fast Day 2

It's not that bad.  I'm trying to keep busy and stay out of the kitchen! 
Picking blueberries today was a challenge b/c I sooo wanted to pop a few in my mouth!  But its ok.  And the time is flying by. 

The mornings may or may not be better.  I think they are but I'm also aware that it could be my imagination.  One thing is for sure.  Right now it's not worse..and that's without meds and supplements.  So that's good!

I'm going to carry this until Sunday morning since the mornings are the hardest.  It'll give me one more morning on the experiment. 

Thursday, May 31, 2012

Fast Day 1

I'm an hour and a half away from completing day 1 of the water fast.  Other than a slight headache its going very well.  My knee is clearing up and my hands have been pretty good all day. 

My Verse I'm praying...
"Let the favor of the Lord our God be upon us, and establish the work of our hands for us; yes, establish the work of our hands! 

Oh how I'm praying for the Lord's favor!

Time For An Update And Trying Something New

Wow!  It's been over a year since I've updated this blog.  Actually I thought I deleted it and was surprised to find it still up and running.  So here's the upate in a nutshell.... (copied from my other blog.)

~meds were affecting my liver and kidneys
~switched meds
~some things are better, some are not
~everything remains unpredictable
~more popping, more cysts
~my options are becoming more limited
~having a harder time maintaining a good attitude

I've been doing some more research and I'm trying something new.  It's a 3 day water fast followed by a 4 day rotation diet.  The premise behind it states that it takes 3 days for a food to clear your system.  Clear the foods.  Start over by introducing one at a time.  Chart the progress....blah blah blah.  

So I've been food free since 3pm yesterday.  My reading tells me to expect detox flares.  Sure enough I woke up in the middle of the night with a throbbing knee.  My experience is that knees and shoulders don't last long but are pretty intense.  This one is not so intense, but I won't be walking my neighborhood today. 
Is it a detox flare?  Or would it have happened anyway?  I don't know. 

So my plan is to lay low for a few days.  Drink gallons of water.  Pray.  And smile. 

And yes, it would've made more sense to wait until after VBS, after Texas, and after our Colorado visit.  But I figured, why wait?  By next week, I'll be eating again and maybe even feeling better. 

In the meantime I want to be sweet to family and not go off on the person standing the closest or melt into a puddle of tears.  Both of which are entirely possible. 

Will you pray for me?  And if you have any experience with rotation diets can you pass it along?