Tuesday, June 28, 2011

Figuring myself out :)

Lots has happened since my June 3rd post. Most importantly is my clean eating. I went no carb a few days to get a jump on good eating then after about a week I started eating good healthy carbs again. This is no way a no carb diet. What is clean eating? Nothing processed, no fast food, no alcohol, no bad carbs ( high glycemic)  and no sugar.  I realize I can't always be good and be perfect so I'm really trying to learn if I have something bad it's ok and I did not fail, just have to go right back to my good diet.
A special thank you to Tonya for letting me E-mail her and pick her brain. It's been a really big step for me to realize I need to eat for my health and not to lose weight through fad diets. This needs to be about me and health. Check out her blog and she has some recipes I really want to try:)  Happy Body Happy Life

I hit the 3 week mark on my new eating plan and had a mini family vacation. I had the best intentions to not eat bad and not fall off.  My husband ( I love you dearly) bought veggies and fruit to snack on for the car ride that Thursday to help me overcome temptation and I was going to allow myself a restaurant night and not feel guilty about it. All started off well and the restaurant was delicious. But the next day with the best intentions of staying on track I started to spiral. Saturday we cooked out with the neighbors,  pizza on the grill and ate way more then I should have. Sunday I told my husband enough is enough I need to get on track here but also said lets go to breakfast and made poor choices then another cookout with neighbors eeks really spiraling now. Monday I had another good intention thought but not prepared so I started snacking on sugary stuff then to tired and hurt to much to go shopping so ordered Chinese for dinner.
Last night I felt tired, bloated and swollen. RA was acting up with all the crap I ate. I decided I did not just invest 3 weeks into my health to give up so easily and 4 days is better to recover then not at all. Yay me...Am I actually figuring this out?
So this morning I made a strawberry smoothie with protein powder. I took a trip to the fitfood trainer and bought some snacks and lunches. Had a nice talk with the owner Sarah and she is having me food journal and we are going to go over it next week. It really motivated me to chat with her and also that she would take the time to go over my food journal  and help me tweak my eating is beyond awesome.  It's also nice to say I have RA and I am struggling like hell to figure this all out and I need help!  Hopefully I can get some workouts in with her very soon. Baby steps but it's on the goal list! 

On the RA front:
I started a new medication last Monday. This one is called Actemra. I was feeling a little nervous about switching. Even though Remicade stopped working I was at least getting a break in the pain. 2 weeks of feeling like me is better then no weeks. Nothing really exciting with the new med just yet. I was told it would take until the second dosage ( given every 4 weeks)  for any real relief but I should notice the edge is at least gone. I would agree that is an accurate statement. When I take prednisone in the morning it's kicking in faster and lasting longer. Better then being in so much pain I can't move so it's a start :)   On the plus side the Actemra IV infusion is only an hour long compared 2 hours with Remicade. Hopefully next month after my next infusion I will have more news. But I am staying hopeful this new med and eating clean is the answer!

Wednesday, June 15, 2011

Thoughts and prayers to RA superbitch

I'm starting this post with a heavy heart. Yesterday I seen one of my facebook friends comment on a fellow bloggers page leaving condolences to her passing. I was left feeling numb and shocked. I just recently found her blog and read back as far as it went. This was someone I could relate to a lot in her posts and who made me laugh. I think anyone that read her blog with RA could laugh. She talked about her pain in the way we could all relate and feel like we wrote it. 
Recently I have deleted a lot of RA pages I was on, I have even deleted RA friends that added me. Usually there is no connection. I had one girl who every single time seen me on FB would message me instantly and whine and complain. At first I did the supportive thing and tried to offer advice and suggestions and try to be there for her. Eventually my own flares started and not once did this girl ever ask how I was or listen when I needed someone. Deleted! 
RA Super Bitch was unique in her posts and outlook on RA.
I can't help wondering what happened. I know that probably sounds insensitive a little but this is really close to home. She was married and had a son and I believe close in age to me. I wonder if  it was something caused by the medications or the disease or something not related but RA caused complications. It's really scary stuff. I can't help look in the mirror and wonder if that could be me.
I pray her family and friends can find peace. I didn't know her personally but she will be missed by anyone that followed her blog in the RA community. 

Friday, June 3, 2011

RA you won this one, but I won't stop trying.......

Hello neglected blog!  I sure have had a rough month. One thing I have realized is I go in hermit mode when I am in pain. I was really bad about returning phone calls or answering text messages. I gave up my favorite games and stayed off FB.  I'm sure some of it was depression even though I take a little white happy pill when the depression first got bad but I don't think anything can combat the feelings when a flare is in full swing.

What went wrong?
It all started with my son getting a little cold. For anyone with an auto-immune disease there is no such thing as a little cold. I knew it was coming on that Monday and things stayed fairly mild all week and I thought ok this is do-able. Saturday morning I knew I was in trouble and didn't hesitate to go to urgent care. I even told the nurse I know this song and dance and I know I have a sinus infection. The doctor came in and  listened to my speech looked in my ears and said wow you have a nasty ear infection. She said probably an upper respiratory and sinus too but at this point we already know you are getting antibiotics. I asked for a shorter dosage since I can't get my infusion for 10 days after taking them so she gave me 5 days worth and strong lil buggers.
Then came the flare. And he wasn't pretty or nice.  I called my doctor practically in tears I still had almost 3 weeks till my infusion. What in the world am I going to do? He said the antibiotics caused the flare, they always make the RA worse.  What a catch 22 that is. The RA drugs make infections more likely to happen but the antibiotics make the RA worse I can't go without either one. SIGH   So back on Prednisone and hello Vicadin. Even this wasn't helping. The worst night I was in so much  pain I couldn't stand to be touched. I cried the whole way up the stairs and just laid on my bed, even the blankets hurt to be on me.

Everything goes downhill.......
 So everything went to shit...literally. This was by far the worst flare I have ever had and I have been consistently struggling for a year. Along with depression I had horrible feelings of guilt. Guilt is a really powerful emotion. I felt like a horrible mother and a horrible wife. If my husband even sighed I was racked with guilt that he was having to do everything.  My son wanted to go outside and play or for me to sit on the floor and play and I couldn't do it. I couldn't make dinner, clean the house, go shopping or take my son out for fun. Depression, guilt, anger, sadness and the list goes on.

And for the fail.....
I gave up on everything. I stopped eating right. Stopped all exercise ( that goes without saying why)  I let this flare win and take over my life. It's so hard to care when emotions are swirling one on top of another. I wonder if I ever will win this game and get it right.  As I write this,  I think no way but I feel ok again and it's easy to think I have a chance, it's also hard to stay positive.

What is coming up....
My doctor is switching my meds, I had to get my Remicade infusion last month the new med wasn't approved in time but I feel pretty good for now till it wears off. I hope it's close to the end and not so soon like last month. Again it's hard to stay positive.
Tomorrow I am starting a diet again with a concentration on foods that work with the RA so stay tuned hopefully Monday I can start with some goals again and get back on track here.

Tomorrow is a new day........