Tuesday, January 25, 2011

Mondays are never good days!

Monday was a rough day.  Not sure if it was because it was so cold outside, stress or both.  I have been going back and forth in my head about what to do about medicine and breastfeeding.  I wanted to breastfeed my son as long as possible without taking medicine, but I am to the point now where I know I need to try and stop the progression of this disease. I am having more frequent flares and feeling tired again.  I research every chance I get about the safety of the medicine options I have been given. Funny I  never seem to find anything concrete.  

My rheum doctor has given me the 2 options if I want to continue breastfeeding.  Both drugs pass to the breastmilk and then to the baby.

  • L1 (safest)
  • L2 (safer)
  • L3 (moderately safe)
  • L4 (possibly hazardous)
  • L5 (contraindicated)
  • A (controlled studies show no risk)
  • B (no evidence of risk in humans)
  • C (risk cannot be ruled out)
  • D (positive evidence of risk)
  • X (contraindicated in pregnancy)
1. prednisone (L2, C drug)
Which she says is safe to take while breastfeeding. This is what screams out to me in my head "its a steroid!" 
2. Plaquenil/Hydroxychloroquine (L2, C drug)
My rheum doctor says I can take this while breastfeeding but she wouldn't recommend it.  Hmmmmm...well is it safe or not?  In my opinion NO! It is used for treating Malaria and is an immune suppressant.  

A couple of months ago Advil and Tylenol weren't helping to manage my pain so I researched Naproxen.  I found a couple of different sites that all told me different things. "safe", "absolutely not safe".  So I called my pediatrician who told me that the American Association of  Pediatrics said it was safe to take while breastfeeding. My pediatrician told me to air on the side of caution though and if he acted lethargic or started to vomit to stop. So I debated a few days and then decided since they say its safe I will give it a try.  My poor little man slept the whole day away and when he was up continuously spit up.  So needless to say I stopped.  This is why I am so apprehensive to take medicines.

What I have realized is this is really a decision I have to make myself.  I can ask 10 doctors what they think and they can all tell me something different.  I can read 10 articles and have the same outcome.  In the end I will take what I want from it and hear what I want to hear.

Here are some informative links I found...

If anyone else has gone through this and taken the medicine while breastfeeding or made the decision not to breastfeed I would love to hear from you.  Looking for support.

Saturday, January 22, 2011

Good news!

Good news this am.  In bed last night I was searching on my wonderful NookColor and discovered a blog http://rheumomtoid.blogspot.com/ which then lead me to more RA blogs.  I have been focusing on one thing and one thing only which is why I have been unable to find support out there.

I have been focusing on looking for other nursing moms with RA who are taking medicine.   I have to remember that nursing is only a short period in my struggle with RA.  I have to take a step back and remember this is about me.  I have been focusing on my family and how it is going to affect them. This is of course important but I can't be the best me without focusing on me first.

I am going to spend my day looking at these blogs and reading everyones story.  I will post back later.

Friday, January 21, 2011

Does diet affect Rheumatoid Arthritis?

That's the million-dollar question.  From my research and my rheum doctors opinion, no conclusive evidence exists to show that particular foods make RA symptoms flare up or decrease.  My rheum doctor told me that they have found people who suffer from rheumatoid arthritis have intestines that are more permeable to certain antigens, allowing these antigens to invade the body, stimulating the symptoms. Although most experts are not ready to endorse major changes in diet, they are cautiously acknowledging that certain foods may affect painful joint inflammation, which is the main symptom of this chronic and sometimes crippling disease. 

After seeing my rheum doctor and discussing what I could do until I decided to go on medicine, we decided to try diet.  She does not believe it will stop my disease but she did think it might help with the symptoms.  I began by slowly cutting one thing out at a time.  First eggs which was easy because their are so many substitutes. Then milk, not all dairy I had to cut out cheese slowly. I then cut out soy which is by far the hardest since soy is in absolutely everything. Once I mastered these 3 things I slowly cut out all dairy which was easy because I took it slow.  I am not a big bread girl so it has not been to hard to cut out gluten.  There are also many substitutes for flour and other mixes. It took me 2 months to totally cut soy, dairy, gluten, and eggs out of my diet. After being on this diet I have found that I seem to be most sensitive to soy and egg.  Which is interesting since my sister just found out she is allergic to soy and egg. Allergies do run in families. I have to say I feel great.  I have energy without coffee which is pretty amazing with two kids running around.

The diet was really working for a while and I thought maybe just maybe I had food allergies that were causing these issues. Then I would wake up with a swollen joint or sore feet and I knew that wasn't the case. Most doctors will  tell you it has no effect on the way you feel but it did for me almost immediately.  Diet will not stop the disease but I do believe it will help to keep the flare ups away and bring back energy.  Whenever I cheat I pay for it.

I went back for a follow up visit and talked to my rheum doctor about how I was feeling and how the diet was going.  She still wants me to start medicine as soon as possible but is still working with me on investigating all options before medicine. She is sending me to have allergy testing done to see if I have any allergies or sensitivities.

It's smart to consider how your lifestyle might play a role in the ups and downs of rheumatoid arthritis. Take control of your health and do as much as you can to make yourself feel better.  Medicine is not always the only or immediate answer. 

Wednesday, January 19, 2011

Go shine your sink!

This has been a rough week for me where pain is concerned but on a positive note I have been so happy and relaxed this week. I think it's because I shined my sink! My friend had told me about this site http://flylady.net/ and Monday I decided to start something I think may change my life!

This is her question...
OVERWHELMED? DISORGANIZED? LIVING IN CHAOS? The FlyLady's Simple FLYing Lessons Will Show You How to Get Your Home and Your Life in Order--and It all Starts With Shining Your Sink!

Day 1 Shine your Sink
This took a good 4 hours but well worth it in the end. It wasn't 4 hours of cleaning! I took an hour to clean up the kitchen and area around the sink and 2 hours of soaking and an hour of shining.  It was amazing how good I felt about my sink.  I wanted everything around me to shine this bright.  

Day 2 Get dressed to lace up shoes.  
I think this was the turning point for me and how I feel this week.  My normal routine is to get up about 30 minutes before my kids and take a nice warm bath.  It is the only way to get me going in the am because of the pain and stiffness from the RA.  Then I throw on my PJ's and shoes yes shoes not slippers.  I have to wear shoes because my feet hurt (feels like I am walking on the bones in my feet or rocks). I grab the kids feed them and then me.  Her plan is not much different but I need to get dressed not back in my PJ's. So Yesterday I did just that.  I took my bath and got dressed did my hair and face and put on my shoes.  It was amazing how good I felt.  I had a little extra energy in my step and I am sure it was because I had officially started my day. Oh and I shined my sink! 

Day 3 Do what we have already done
I did just that!  I got up took my warm bath and got dressed.  I feel so good about me and the house. I will be sure to shine my sink before bed!

I think the biggest thing for me is to keep moving.  The more I move and do the better I feel.  I think this goes for any SAHM. From talking to other Moms the most common thing I hear is that they feel better through out the day when they get up and get dressed.  I can't wait to see what else she has in store for me.  I haven't looked ahead because she says to take baby steps.  This is what I am doing with my own life taking it one day and step at a time!

Tuesday, January 18, 2011

Anyone else out there?

It has been 8 months since I was "diagnosed" with RA but it is now official.  I have Rheumatoid Arthritis.  I have 5 out of the 7 symptoms on the checklist for RA and you only need 4.  Over the last 8 months I have really watched my disease progress. I have not taken any medicine because I have been nursing my almost 9 month old son.  My Rheumatologist was pretty sure but not positive I had RA so I  wanted to see how this all progressed and research research research. I believe you are your best advocate when it comes to your health. 

When I first saw my Rheumatologist I only had 3 of the symptoms high RF blood count, morning stiffness and joint pain in the hands.  I can now add swelling in joints and nodules to the list. Thinking I might have it compared to actually having it is very different.  I was really hoping it would all magically disappear maybe turn out to be a really bad virus. Every time I think I have come to terms with RA something new happens and the fear sets back in. One thing I know for sure after watching family members struggle with heart disease, diabetes and high cholesterol. I will take the next step and take control of the disease it WILL NOT TAKE CONTROL OF ME!

What is so amazing to me is that there is so little support out there for people with RA.  There are a ton of sites on the disease its self but not much else. I was really looking for an RA Mommy group but found nothing. I have had such a great Mommy support system with my daughter and son. I found a few forums with people asking questions and never getting answers from years ago.  How can this be?  I know there are other Moms out there!  I am trying to build something for people like me who just have questions and want answers from someone who knows.  A doctor can answer questions but they haven't lived it.

Right now I am taking control of my life by doing things that make me feel better and keep my house and family in control.  I get so overwhelmed if a room is a mess or needs to be cleaned that I'm almost paralyzed. I can't tackle it because I don't know where to start.  I am taking it one step at a time and making small goals for myself.

Anyone else out there?