Monday, March 5, 2012

Does your RA define you?

My RA defines me. I live it everyday. I think about it everyday. It's there when I wake up, when I go to bed. It's there when I feel sorry for myself and it's my never ending excuse for any and all diet and exercise failures.
I don't know how to break this cycle. I try and try and never really get anywhere. I went from being so motivated 2 months ago to not giving a shit.

 I know I don't do good with stress.  To much in my life started spiraling and I just let it scoop me up.  After 13 years my husband was let go from his job. We work(ed) for the same company so I can't get into details but it shook us. We have never had to deal with one of us not having a job. In all reality we are doing fine but it's one of those things that shakes you up and tilts your world.

I lost my walking buddy pretty much at the same time.  I gave bad advice on my last post about this. Not bad in finding a friend but bad that I let this be my biggest motivation. Days I didn't feel like going I had no choice, there was a knock at the door.  I should have found my own motivation and counted on myself.
 My neighbor said she didn't want to walk anymore since she gets a better workout on the treadmill. I have RA I can't go fast and I did the best I could. I can't be mad because someone doesn't have a disease for life and can get fit a lot faster.  It sucks. My disease. My reality.   I would have continued to walk on my own but my husband said no way I could go out at night alone, can't blame him for being worried, we live in a safe neighborhood but you never really know what can happen.  Fatigue is still my enemy so waking up early is out of the question. I tried to walk on lunch but it was hard to get out there on my own when it's cold.  One day turned to two, then three and it's months later.  I did get a free treadmill ( thanks Krisi!) but by the time I got it I was off the boat and sinking fast.

I quit weight watchers to save the money.  Eating pretty bad again. I have tried twice to get going on at least eating good and I just don't have the motivation to run with it.  I just can't break the cycle. I took a 10 minute walk today and all the pain I went through 3 months and had to fight is back again. I know I have to walk through it and go slow.  Spring is coming, it'll be light out longer and I can walk at my own speed. Just need to start with some mini walks now so I can get back up to 2 miles a day.  Really is sad I can't even walk 10minutes now.  I am so angry at myself for going backwards.  How many times do you have to feel like you hit rock bottom and start over for it to stick?

I'm trying to remind myself as I type this things could be worse. I have the insurance so my $8,000 a month treatments haven't been affected. It's new year, flex spend started over and I don't have to worry about medical bills since I put double the money in as I did last year.

To recap: I am feeling a bit lost at the moment. RA is defining me. RA is my excuse to not care. I am trying hard to break the cycle and I don't know how.   My goal this week is to take mini walks of 10 minutes. It doesn't matter if it's only one a day or two but  have to move and I have to break the cycle.

PS *Any advice greatly appreciated*

Saturday, December 10, 2011

The Curse is BROKEN!

Back in September,  I described my life based off the movie Groundhog day " Enough is Enough"   I really felt every day was the same. I waited and waited for things to get better or even a glimpse of hope. I felt hopeless and defeated.  I looked at the picture yesterday I talked about in that post and it doesn't even look like me anymore.  I'm to chicken to post it yet :)  Maybe when I hit my goals I will,  right now it is horribly embarrassing to me even if I don't look like that anymore.
Last month at my rhuemy appointment, my doctor said to me, "I haven't seen you look this happy and good in a really long time."  I didn't see what he did. But..... yesterday,  I did.  

It's amazing to me I broke the cycle 2 months ago and just now realized it. Maybe it took 2 months for the good effects to start to show and to really feel it.  It wasn't easy. I had to walk through the pain and discomfort. One week I had the eating down perfect but no exercise. The second week I had the exercise down but not the eating. At some point I started to do both.  I'm on week 10 of walking with my neighbor. We are doing 2 miles in 45 minutes and it's cold here!!  I'm extremely proud of her also, having her help me stay motivated is extremely important. I hope I help her in the same ways. Also going on 4 weeks of weight watchers, I really am following the plan this time around and the results are showing!

I have zero pain. Did I say that correctly?? Yes, ZERO  pain! I want to scream it from the roof tops! I feel fantastic and happy and alive again.  I learned a lot this past few months. Sometimes you have to hit rock bottom before you can pick yourself up again. Perseverance isn't a race. I pray the so called RA remission is on the horizon and this feeling lasts a long time :)   Stay tuned!!!

Thursday, November 10, 2011

I really missed October?

I am a bad bad blogger! I can't believe a whole month slipped by me. Nothing to write about or laziness? Maybe some from column A but mostly column B :) 
I feel things are starting to fall in place for me finally. I won't lie I struggle every day. I'm off the Prednisone and the pain came back. Such an evil pill that gave me 20lbs as a present this time around. Ugh,  seriously went backwards and having a hell of a time getting this weight off.  

I started walking with my neighbor, we walk 6 days a week and go swimming on Sunday. The first week my lower back hurt so bad I wanted to quit. I kept pushing through it. I have since learned it's hip pain causing the discomfort.  The first week it took us 30 min to do a mile, by week 3 we made it 20 minutes. We are now on week 6 and walking 1.6 miles, hopefully 2 miles soon. Last week we even ran intervals. Yes, you heard correctly " I ran" haha  we ran for a minute and would walk for 3  we did that for a mile. I haven't been able to do that very often but a month ago I couldn't at all. I'll take what the RA demons give me.  I think the biggest challenge is the lower back pain and feet hurt a lot.  I keep telling myself the more I do the more the endurance will build up. I really hope it's soon.

I recommend a walking buddy. I don't think I would still be walking if it wasn't for my neighbor. Having someone with similar goals is a huge advantage. We end up talking the entire time and before I know it we are home, even if I hurt talking takes my mind off it.  We walk rain or shine. Last night was rain, wind and cold and we still did it. It's an incredibly good feeling. I assume soon it will snow. We may be crazy but come on we live in the midwest, a little snow isn't an excuse!

So all this walking surely you lost weight? It's not that easy. I initially lost 5lbs my first week and I was eating no carbs, I don't want to be on a no carb diet.. I just wanted to jump start things and cold turkey the sugar and bad carb cravings.  Once I added the healthy carbs back in the weight loss stopped.  I have to tell myself the walking is more then weight loss, It's kicking RA in the balls and giving it the big middle finger!  So I am not dwelling to much however I'll admit it is starting to annoy me.  My doctor says patience. Patience can bite me. I'm tired of being patient. Everything with RA is patience.  Lets just stick with perseverance. I need to keep going and one day turns into one week, one week is now a month. Perseverance was the reason I started this blog and it's the reason I will succeed.

Saturday I am joining weight watchers. My neighbor joined last week.  I have been on it before. It's a great program but I never last more then a couple months. I'm also going into this time with a different attitude. The last few times I went in overwhelmed and even feeling like I hit rock bottom.  This time feels different. I have my neighbor as support and we have been so good for each other on walking, I just feel having that support and cheerleader for weight watchers is really going to help.
I'll write more on that next week or next month.whichever comes first :)

Saturday, September 3, 2011

Enough is Enough

If I had to describe my life based off of a movie it would be "Groundhog Day."  That sums it up perfect. How did I get in such a rut?  I had so much motivation and good intentions a few months ago but everyday went exactly the same. Days turned into weeks, weeks into months.  Enough is Enough!  I'm going back to the basics to get myself on track and break this cycle.

I feel horrible. Crazy part is it has nothing to do with my RA. My eating healthy went right out the window and things really got out of hand. I realized last week my jeans didn't fit....eeeks not a good sign! I finally got the nerve to weigh myself,  really really really NOT good!  I'm still on Prednisone, this is where the downfall began, it's an evil drug and I am ready to get off.    I went from 10mg to 7.5mg last month and currently on 5mg. I am hoping my next appt we can finish of the ween and I won't have that working against me any more
My son turned 3 last Monday, we had his birthday party on Sunday and I was looking at pictures tonight and I was looking at someone who was not me.  What a wake up call. I had plans already to start eating healthy this week but wow seeing those pictures really made me look in the mirror. How did I let this happen?

Enough of the pity party. Time to fix the damage.  No excuses.

My RA is doing pretty good, Actemra seems to be doing it's job. So it's time to stop living like it's bad. It's time to get moving again.  Small walks to get the joints going is my first goal this week  I'm going to aim for 2 15 minute walks a day this week.

Bad eating habits. Sadly it's cheaper to eat bad. Amazing to me that you can get something from fast food cheaper then an organic salad.  Second goal this week is no fast food. Meal plan for the week and bring my lunch to work.

Third goal this week: Drink a pitcher a day of Dr Oz's Tangerine Weight-Orade
Sounds pretty good to me and easier then drinking plain water.

So good-bye to my groundhound day life.

Finish every day and be done with it. You have done what you could. Some blunders and absurdities no doubt have crept in; forget them as soon as you can. Tomorrow is a new day; begin it well and serenely and with too high a spirit to be cumbered with your old nonsense. This day is all that is good and fair. It is too dear, with its hopes and invitations, to waste a moment on yesterdays.
Ralph Waldo Emerson

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........