Appointment Today

Today was my appt with Dr. Baker.

Honey went with me, which was great. It's like an out-of-town date!

Anyway, he mentioned that it's only been 9 weeks since we've started this treatment. That doesn't sound like long at all does it? And so much improvement in a short amount of time!

There are some tweaks we are doing with the hormone cream b/c my symptoms are so cyclical. He is also starting me on a low dose Nystatin for awhile for Candida.

I was really hoping that he'd say we were done with all the LGS/Candida business and that I could start re-introducing some foods. But no. We're looking at a good 2 years.

And while that kinda sounds like a long time, it's ok. I'm finding more and more foods that I like. Besides, its worth it to feel better. And most of the time I'm feeling pretty good.

Lately...
~I opened a bag of chips!
~I don't doubt whether or not I can walk during tutoring.
~I can almost wear my wedding ring.
~I've discovered that I'm pretty good at making smoothies.

Seems like any type of fluctuations in my body affect RA.

I think I have a urinary tract infection. No big deal b/c those tend to go away very quickly with lots of water and blueberries. But I'm up earlier than need be for 2 mornings in a row. I feel it.

Last night I asked Honey if he thought there was improvement. He wasn't very encouraging. He said that I'm just coping better. I didn't agree. But now that I think about it, I see how we each view this differently. He will not be satisfied until it's gone...completely and totally gone. I tend to settle for "at least it's not like it was". I need to aim higher...and pray to that extent.

Better!

When asked, "How are you doing?"

I can now say with all sincerity, "BETTER!"

Not just better spiritually, or better emotionally, but better physically too!

Something else I've noticed is that it does not take as long for the morning woes to wear off. Like I can't turn on my lamp first thing. But in about 15 minutes I can. And I'm no longer wondering how much clappers cost.

This week there is a positive difference. And it's lasting! I feel better. I don't hobble as much. And I have more mobility in my fingers! And it's been a few days in row!

I have noticed a pattern. The first one. If I don't sleep well, it'll be a painful day. If I do, the day is usually good. I've been trying to be careful about going to bed on time. Strangely enough though, sometimes even if I sleep all night long I still wake up tired. Haven't figured that one out yet.

The weather doesn't affect me at all.

This is weird. All of a sudden my hair and skin are oily. I've never even had issues with this before. Could it be the hormonal issues? I don't know.

I'm trying to exercise. I don't feel strong. I think with the weight loss came muscle loss as well. Gotta get that fixed. But tonight I carried ZBoy from the car to the house in the rain w/o a lot of effort. That was nice.

What I'm looking forward to...
~wearing my wedding ring
~making a fist
~doing Bird's pony tail as tight as I want it
~opening a bag of chips by myself

With so many little kids I've spent years sitting on the floor. I like sitting on the floor. But a couple of days ago I needed to sit on the floor and my first thought was "how?"

And then I realized that I hadn't been sitting on the floor. I've preferred chairs.

That made me mad. Mad that this has robbed me from the joy and ease of sitting on the floor with my kids. And it was so gradual that I didn't even notice.

But I did sit on the floor. And I'm going to keep purposing to sit on the floor....just b/c I can. Even if it isn't as easy right now.

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There are good days and bad days and they are pretty even. I fluctuate between a 2- 4 1/2.
I can't find any pattern or commonalities.

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I've been contemplating on the sovereignty of God. The fact that God is in total control, gave this to me Himself for my good and His glory. And the minute that it is no longer useful for my good and His glory, He will take it away. So even though I don't feel grateful, I'm choosing to give thanks by faith b/c trials bring us closer to God. And there is no place I'd rather be.

Currently

"How are you feeling?"

It's hard to know how to answer that question. And for awhile I would say, "It's not getting worse."

But this morning Honey told me that it is getting worse. He watches the way I move. He takes note of my increasing limitations. He doesn't "get used to it and adjust" like I do.

I can't decide if I agree or not. True, it's not been as aggressive as initially predicted. But I can't say that there is ever improvement to speak of. This morning I found that I could straighten 2 fingers that I haven't been able to for over a week. But I could not turn on my lamp. That's never happened before. While the lamp is an issue every morning, I can always adjust and use different fingers to do it. But this morning it took awhile before that happened. So as one thing appears to improve, another gets worse. At least for a time. It's like waking up every morning to a surprise. An unpleasant surprise in one way or another.

The popping comes and goes. But now it's in my fingers. Not the audible popping of my shoulder, but the internal popping that I can feel. There have been a couple of times that my thumbs have locked. THAT is a weird and scary feeling!

I don't know anything else to do differently. I'm following the treatment plans for candida and LGS. Now it's just wait and see. I need to exercise more.

The worst part is the way it affects my husband. He handles it well on the outside, but I know it's a burden.

The one word to sum up this year would be "broken". So many things are broken...
~the computer
~the glass stove top
~various dishes
~the water hose timer
~the garage door opener
~the car
~the cookie jar
~the salad spinner
~me

Emotionally I think we're doing very well. There is a difference between waiting and being patient. We have no choice in the waiting, and we need to work on the patience.

Candida

I tested positive for candida.

I figured.

From what I understand, it goes hand-in-hand with LGS.
So I'm on a 10 treatment plan for that. But since I was already well on the way to most of those things before the test came back, I'm hoping I'm at least a little ahead of the game.

Glad to have another piece of the puzzle.

A Setback

The morning after my great day I woke up and realized it was over. The goodness didn't last. In fact, it was quite a crash compared to my recent progression.

My walk was slooooow. I couldn't turn my neck. Or straighten my fingers on my right hand. It was actually in every joint that is typically affected by RA. Swelling, popping. I hate the popping.

I spent the day confused. What happened? Why the huge set back? What on earth could've changed? I prayed for answers and tried to guard against self-pity.

And in the afternoon, it was clear. And to avoid too much information, suffice it to say it was totally cyclical. Completely hormonally related. And I had no idea.

This was great news! First of all, b/c it was an answer..with an end. And also b/c it's sort of another piece of the puzzle. Something else to track, to expect, to talk over with my Dr. And it also validated in my mind that we are approaching this the right way.

Progressively the week is getting better. The walk is faster and more steady. I have more energy. I can turn my neck farther and almost straighten my fingers.

I'm guessing by Saturday, I'll be back to the low digits!

Ask Me What My Number Is

Go ahead. ONE AND A HALF!!

I know!! And what does a one and a half mean, you ask?

It means I can...

~Spend hours in the kitchen trying new failures experiments.

~Spend more time making something people could actually swallow.

~Spend some time outside.

~Open something that Jes couldn't. BOOYAAH!

~Walk all the way from the bedroom to the living room to get my blanket without rolling my eyes.

~Fill up the humidifier all by my onesie.

~Roll hair.

~Have full range of motion in both shoulders!

1 More Thursday!

Thursdays are hard days. It's day 2 of the 2 days a week I take Flagyl. I hate it!

I took a 3 hour nap in the middle of day today and the kids had to continue school and fend for themselves. (Great job kids!)

But this is week 5 of 6.
Just one more left to go!!

Oh How The Lord Answers The Prayers Of His People!

Thank you all for praying for me. It was a great day!

The good news...
~My body is handling the RA very well.

~Even though it doesn't feel good, medically speaking my inflammation is very low.

~I have no nodules.

~The ultrasound on my hands show no damage and very good blood flow.

~I lost 10 pounds.

~I don't go back for 10 more weeks.

~I found a quarter in the parking lot!

Praising God!!

In The Regular Course Of My Reading This Morning..

"The Lord is at hand, do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus." Phil 4:6-7

I love the "The Lord is at hand" part!!

Tomorrow

Oh I don't wanna go tomorrow. Like not AT ALL. I dread it. And I hate not looking forward to future life. I don't wanna hear that my case is exceptional or words like "irreversible damage". I don't wanna cry in his office again. 1pm tomorrow. Will you pray for me?

I had a great drive and lunch with a couple of friends down to NWA to visit Dr. Baker this week.

We talked about Leaky Gut (LG) for awhile and he started me on Nystatin and probiotics.
And since they usually go hand-in-hand, I probably have Candida too. :(

He tested for that but since I'm down to about 12 foods I can't imagine that the course of action will be much different.

He stressed again how low my hormones were and added additional DHEA. We will test this again in 6 weeks.

But this was the disappointment. He said that it might be a good idea to start the Plaquenil that my Rheumatologist gave me (but I threw away). It ought to be short term b/c we are working from the other side to "pull it out by the root", as he put it. In the mean time, it will help symptoms and help to protect my joints. He said the side effects to my eyes were pretty low and felt like it was risk worth taking.

I've been praying about this. And I do think he's right. It is a step I was hoping not to have to take.

I have a Rheumatologist appt Monday. This guy is not the bearer of good news so I'm not looking forward to it. But I am concerned about a couple of joints in my hands so it must be done. Plus I'll have to confess to throwing away the Plaquenil script and ask for another one. :)

One thing that Dr Baker said that has stuck with me is that the fact that we have stopped the momentum is an initial measure of success. This disease hit hard, fast, and aggressively and it will take time to stop the train and put it in reverse.

And while I wish it was done (obviously) at least it makes sense that it's not something to happen overnight.

My hands are not better. At all. I think my feet are, a little bit. My stomach is often queasy. BUT I have noticed that the mornings are not as bad. I remember a couple of weeks ago before I went to bed, thinking how I dreaded waking up in the mornings b/c I never knew how it would be. I don't think about it too much now and I don't know if it's b/c I'm used to it, or b/c it is actually better. In any case, it's nice to not think that way anymore!

Waiting

My pastor told a good story Sunday. I won't re-tell it as well, but you'll get the idea.

It was an interview with a released POW. The interviewer asked him how he managed during the 8 years he was held captive.

He said that he just held on to the hope that he would be released and always trusted.

The interviewer asked, "But what about the ones that didn't make it?"
His answer, "They were too optimistic."

"They kept thinking that they would be released next month. When next month came, they were broken hearted. They the set their hopes on the following month. And they were broken hearted. They were naive and too optimistic without facing the facts of the brutal reality."


Oh wow, did that hit home!

I read success stories of ppl being well in 12 days. I hold on to the hope of feeling better in the morning. I set goals and measure.

And I'm disappointed.

But the fact is, I will be healed in His time. Not mine.

And I need to wait patiently w/o losing heart.

Update

It's been a week of good days and bad days. They all seem to be with no real pattern.
But some of my blood work has come in....well all of it now I suppose.

1st - Rheumatologist #1 called to say that my abnormalities were not a fluke. It was just as high the second time around.

2nd- My hormone levels are very low. The goal being between 300-400 and mine is 45.
I started a hormone cream once a day. Probably explains my miscarriages and I'm wondering why my OB/GYNs didn't test for this after the first one.

3rd- The food sensitivities were the unwelcome mail of the day and I broke my record of not crying for several days in a row. Turns out Dr. Baker thinks I have Leaky Gut Syndrome. Does that sound like the grossest thing you've ever heard? I know.

I've heard of it before but assumed it was people with bowel issues like diarrhea. Apparently not. But here's a good definition I copied from the internet.


"Leaky gut syndrome, or intestinal permeability, is a condition in which the intestinal lining is more permeable than normal, which means there are unusually large pores or spaces between the cells that make up the intestinal wall. This additional space allows toxic substances such as bacteria, viruses, parasites, and other harmful factors to enter the bloodstream and reach every part of the body. In a healthy gut, these toxins are eliminated. "

From what I gather right now, the best thing to do is to cut out the foods that I'm most sensitive to. In my case....dairy, wheat, corn, grapes, onions, garlic, etc.

I've been on a strict gluten free, sugar free, vegan diet minus nightshades for 3 weeks. And let me tell you...I am mourning the loss of the onions and garlic right now. And extremely disappointed about the wheat/gluten and oats. But oh well. I was also hoping to see some quicker results but now I read that it will probably take months for my digestive tract to heal.

I go back Wednesday with my friend Renee and a whole bunch of questions.

My Prayer Today

"You hear, O Lord, the desire of the afflicted; you encourage them, and you listen to their cry, defending the fatherless and the oppressed, in order that man, who is of the earth, may terrify no more." Ps 10:17-18

Lord, I need your encouragement!

His answer:
"'Because of the oppression of the weak and the groaning of the needy, I will now arise', says the Lord. 'I will protect them from those who malign them.' And the words of the Lord are flawless."
Ps 12:5-6

A Pattern

This is the first pattern I've noticed...

Wednesdays and Sundays are the worst. Church days.

Interesting, no?

It's more of a set back with my hands than I've had in awhile. It was hard to turn on my lamp and that's not something I usually even think about anymore. I've noticed it's also becomming more symetrical, which is typical, but more than it used to be.

It's morning though so I know it'll get better as the day goes on.

I tried almond flour yesterday. Loved it! But is it contributing to the pain of the morning? I'm not ready to say so yet b/c those muffins were yummy, but I'll give it a few days and see.

Boring Blogging

Reading over this I see that this is NOT a very fun blog. And it almost bothers me that I made it public because it is not encouraging or uplifting or edifying at all. And I'm sorry!

It's boring and depressing and I hate posting things that will have no value to absolutely anybody else. And in an effort to chart this honestly, I feel like I come across complaining or whining. That's not my intent!

So please don't feel obligated to visit or keep up with it. Use the time to visit other sites that will encourage you and help you grow. But I do need it to chart my progress...and who knows? Maybe when I'm on the other side of this, and completely healed, my journey will help somebody else!

Yesterday

Maybe it was too many cloudy days in a row.
Maybe it was something I ate. Or didn't.
Maybe it was b/c I didn't sleep well.
Maybe it was a spiritual attack b/c it was Awana night.
Or maybe it was b/c I had to eat asparagus for breakfast.

Whatever it was, yesterday was not so hot. And when I wake up not feeling well, there seems to be a downward emotional spiral that accompanies it. Makes for a crummy day.

But today is better! And the sun is shining!! Oh praise God for the return of the sun! And cereal was made...and that makes a good difference.

I go back and forth between being ok with how I'm eating and hating it. I'm so thankful that we've taught our kids not to talk about other ppl's food. And I hope I've never been insensitive to anyone on a restricted diet. I really don't think ppl eat this way unless there's a very good reason. But I AM feeling better...even on a bad day, so it's worth it.

Today I noticed that I could easily turn the knobs on the stove with one hand. And the car ignition wasn't too hard. Progress! I still hate shoes.

Foods today..
Cereal with soy milk (I like rice milk better)
broccoli and cucumbers with dip, banana
vegetable soup

Too Much To Think About

Hey ya'll, I've heard that it was hard to comment so I changed my settings. Hope this helps!

I found a knot on my foot last night. I almost freaked out. But Honey thought it was just swollen and I was fine with that. But it hurts and was still there this morning so I researched RA nodules. He's right, I don't think that's it. At least I'm not calling it that yet.

But the thought has been rolling around my mind today... "What if this is as good as it gets?"

And I don't mean that in a bad way. I'm so much better and I AM thankful. But I wonder if I'll ever be able to pick up my Bible with one hand again or pull out a full pan of food from the oven by myself, or open my own stuff. Will I ever wake up and be able to walk easily again? I don't know.

If not, I guess it's ok. But I still hope not. In any case, it doesn't matter. It is what it is and it doesn't matter today. Today is good.

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Charting

~Slept all night and didn't even hear the alarm!

~No reactions from the new foods.

Foods... cereal with rice milk, broccoli with dip and hummus, mushrooms, green beans, salad.

~Still hard to walk in the morning or when I've been sitting awhile.

Charting

I'm behind on my charting and I ate some new foods so I especially need to do it.

~Slept all night and napped!
~New foods - egg whites and mayo

Foods today - refried beans, broccoli, cucumbers, dip I made from a mayo base, egg whites, juice.

I'm wondering how tomorrow will be with the juice at night. It's 100% juice but still a concentrated amount of sugar before bed. Plus I'm sure the mayo had more fat in it than I've eaten all week (plus the eggs). I did NOT drink enough water today. I even bought myself a fancy cup so why can't I remember to use it?!

~Pain level 2. Seems to hold steady around a 2-4 all week. That's good.

~It's still impossible to open anything. I'm thankful for all my strong openers eager to help. My feet are still touch and go. Sometimes ok, sometimes harder to walk. But it does seem like it's better than in the beginning.

~Getting dressed has not been a problem since last Sunday. Though sometimes the buttons on jeans are not so easy. My man seems to delight in tying my shoes even though it's unnecessary. Oh I love him!

Oh my.

Dr Baker put me on antibiotics. Safer ones, he said that did not destroy the good bacteria. He also said that I may have some reactions after a couple of days and that would be good. Kinda a detox effect.

Boy was he right! I woke up not feeling so great and it went south from there.

I got the ball rolling on school and went back to bed at 10:30. I just got up. At 4:00! PM!!
I slept, shivered, and threw up for 5 hours. Good grief.

But ya know what was happening in the rest of my house? My kids were finishing school, playing happily, feeding their daddy lunch, cleaning up and making supper. Eldest is in the kitchen with pizza crusts in the oven, a vegan pizza recipe underway, and muffins made just in case the pizza is gross.

I am one blessed momma!

Victory!!

I had a follow-up appt with Rheumatologist #1 this afternoon. I saw it on my calendar first thing in the morning. So I called and...

CANCELLED it! And the receptionist was like, "Would you like to reschedule?" And I'm all, "NO thanks!!"

Nope. No talking about shots. No talking meds. No X-rays. No leaving my family to wait in a waiting room, then in an office, then to come home disappointed. Nope. None of it.

And it was weird how excited I was to do that one tiny thing. But it felt so good.

The day got even better. I made some bread for my gluten eaters and when it was time to roll it out, I was able to GET MY RINGS OFF!! Just one hand. But yesterday there was no way that would've happened. They were getting tight and my knuckles were too swollen to even pry them up. And Honey had even mentioned the possibility of having to get them cut off at some point.

But no! Then later in the day I was able to get the rings off my other hand too! Oh yes.

I have more mobility in my thumb and the knuckles on the back of my hand are more pronounced. A couple of days ago they all kinda blended together, puffy and swollen. But not today!

Small victories but so significant! Praise the Lord.

Dr Baker

My man took the day off and we headed to NW Arkansas this morning. I felt so silly sitting in the car and looking forward to the long drive with just the 2 of us. There and back! And what a pretty day too.

We liked Dr Baker. And he took an hour and a half with us! Talking, answering questions, asking questions, looking over lab work, explaining.

He actually wants to get to the root of the problem and not just fix the symptoms! Thank you Lord.

He thinks there's a strong possibility that it is hormone related due to my miscarriage history. So more blood work. And some more (different) food allergy testing.

He increased my SAM-e and Vitamin D3
Nixed the cod liver oil and glucosamine chondroitin
Added 2000mg of Fish Oil and MSM
Plus a 6 week prescription of something that I don't have in front of me now so I can't type it.

He agreed that a vegan diet was a good plan as well as steering clear of the nightshades...tomatoes, potatoes, peppers, and eggplant.

No eggplant? yay! Rats.
But no tomatoes? Or spaghetti sauce, or pizza sauce, or salsa, or.......? Oh well.

I go back in 3 weeks. As for now, we're both encouraged!

Let The Appointments Begin...

Rheumatologist #1 did a thorough exam. Lots of questions. Yes and no. Does this hurt? X-rays and (gasp!) the dreaded gown! Then off to the lab for 10 tubes of blood.

I was told that if all was good, I'd get a letter in the mail. If not, they'd call. A week passed. No call. No news is good news, right? But no. The call came. Very matter-of-fact and not at all what I was expecting. The nurse wanted me to come in for 120mg of Depo-Medrol injections right away.

No thanks. Not yet. And if I could've drowned this out with a flood of tears, it would've happened that day.

But let me tell you the neat part. Mid morning and Honey was home! He's never home that time of day. But this day it happened. And God had provided for me long before I needed it. I didn't have to face that stupid phone call alone.

Doctor #2. There are only 2 in town and this guy has a long wait. But his family is in my homeschool group and his wife helped to set up an earlier appt for me. So grateful.

He looked at my bloodwork and basically told me it was as bad as he's ever seen. I'm facing a very debilitating disease and I need to move quickly. Grim prognosis. More tears. Lots of fear. We talked meds and side effects. But which is worse? The disease or the side effects? Both.

He wanted to repeat my labs just to make sure and I'm still waiting on that. I left with a script for Plaquenil and an appt with an eye dr for a base line b/c of the serious side effects to the eyes.

It's still in my planner.

But God to the rescue again! It was Wednesday and that meant Awana. And if you don't know how much I love my Awana peeps then hop on over to Celebrating Life and read all about them.
It was time to move on.

For those of you who might have RA or are familiar with this sorta thing, here are my numbers...

CCP - 250+ (normal = 20)
Rheumatoid Factor - 407 (normal = 14)
Sed rate - 26 (normal = 20)
C Reactive Protein- 3.19 (normal = 2.99)

The last 2 don't look so bad huh?

I wake in the night and can't go back to sleep. So I start some more researching and find some very encouraging accounts of those who were healed with diet manipulation. That fits a lot better with my way of thinking. And Honey agreed.

And for the last opinion I got an appt with the natural med doctor in Springdale. Only it was weeks away. But ya know what? Today they called to fit me into a cancellation!!! Coincidence? I think not. Sounds like a direct result of my friends and family praying to me!

So tomorrow morning Honey and I will enjoy a drive to Springdale and a visit with Dr. Baker.
I'll let ya know....

So Loved!

I can't believe how many people are praying for me! I feel so loved! And so thankful to be blessed by all of you. Thank you!

In A Nutshell

At least I'll try.

During the week between Christmas and New Years I would wake up with achy feet. All of a sudden it hurt to get out of bed and I'd hobble around a while before I loosened up. It was better during the day.

Then it got worse. And my feet would hurt during the day as well and especially after sitting awhile. A couple of days later my hands started hurting. Then swollen knuckles.

And I was pretty sure I needed to turn back the clock to 2010 .... or the good ol' days...as I like to call them.

I have always been healthy. And with the exception of having babies, I could count on one hand the number of times I'd been to a doctor with an actual illness. This was weird.

So I searched the internet and was sorry to find that I fit the symptoms for Rheumatoid Arthritis. Especially b/c there is nothing good that comes from that diagnosis. But what do I know? I'm no doctor.

Then...OH MY! My shoulder was killing me. Like don't-even-think-of-touching-me pain and I'd rather you not talk or look at me either. No driving. No cooking dinner for my family. No anything except sitting on the couch with my rice bag and praying this goes away. My hands and feet still hurt and it was only getting worse.

I had to do something.

I made an appt with my doctor. She ordered a lot of lab work and told me she thought I fit the profile for RA.

As I waited for lab results, the pain grew worse. It was hard to turn on lamps, or the lids to my contact case, or the can opener. I could no longer guarantee I'd make it to church or piano lessons or anywhere else. I'd wake up and it'd be something new. A wrist, another finger, an elbow, the other shoulder. Always tons worse in the morning but never going away.

Lab results confirmed that my rheumatoid factor was high. My doctor referred me to a rheumatologist.

Let the journey begin....