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!!
Thursday, March 31, 2011
Monday, March 28, 2011
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!!
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!!
I love the "The Lord is at hand" part!!
Sunday, March 27, 2011
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?
Saturday, March 26, 2011
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!
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!
Tuesday, March 22, 2011
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.
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.
Saturday, March 19, 2011
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.
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.
Monday, March 14, 2011
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
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
Sunday, March 13, 2011
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.
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.
Thursday, March 10, 2011
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!
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
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
Monday, March 7, 2011
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.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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.
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.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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.
Saturday, March 5, 2011
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!
~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!
Friday, March 4, 2011
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!
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!
Thursday, March 3, 2011
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.
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.
Tuesday, March 1, 2011
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!
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?
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!
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