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........

Wednesday, April 20, 2011

Fatigue, Fatigue and More Fatigue

Seems there is always something wrong these days. The joints are feeling pretty good but starting last week the fatigue hit me like a ton of bricks and nothing helps. Sunday I went to bed at 8:30 and slept till 6 and I still felt so tired I had to sleep another hour. All week I haven't been able to get up in the morning.  To moms out there,  I describe the fatigue as first trimester exhaustion to non moms and men you know that feeling when you got over a cold or it's starting and you just want to sleep all day? That is where I am right now.

Something interesting today, which I suppose I read before is to exercise. I have been doing pretty good the last 4 weeks but this week is cold and raining and not ideal walking weather. Has me curious if not walking this week has made the fatigue worse.  I love living in the midwest and the season changes. I would normally suck it up and grab an umbrella and get out there. I have even in the middle of winter while it was snowing sat in a hot tub with my friend Laura ( Laura if your reading I know that made you laugh)  But this weather has been crazy,  yesterday it was sleeting, raining, hailing and even a thunder storm.  The high temperature was only 32 out there. Not very motivating to get moving. With that kind of weather you can add an extra 20 min to my drive home and then it's get dinner going try to keep my 2 year old entertained so he doesn't tear the house apart and do this all the while in the back of my head just wanting to collapse on the couch and not move. By the time dinner is done any thought of doing an exercise dvd is gone out the window.

Theory number two is a flare is around the corner? My fingers feel puffy today and my wedding ring felt to tight to wear but besides that I almost made the 4 week mark, I haven't made it 4 weeks with no flare in to many months to count so I am hoping I can hang in there just a few more days.

This weeks goals have just been to make it through the week and stay on top of the eating. I need to take it easy this week and try not to add to much on to my RA fatigued brain. The eating is going pretty good my only downfall this week was not bringing enough snacks to keep the hunger monster away and then eating a big dinner but that can be a goal for next week after my infusion Monday and hopefully the sun decides to peak out at us here in the Midwest and I can get back to walking and eating right and grabbing control of Mr RA. He still hasn't won just because the fatigue is here I am still eating good and will be walking again soon enough!

Thursday, April 14, 2011

Better late then never

I waited to post this week thinking I would have good news about my appointment Tuesday but as it turns out they messed up my date and have me down for next month   I was a bit annoyed at first but then I thought maybe another month is better, I still have no idea my weight but I think my clothes are looser or maybe it's in my head but either way I have another month to really tweak my diet and exercise.
Since I was so close to the lake I decided to take advantage of the sun and took a walk by the lakefront on the beach. It was really nice to be alone with my thoughts and hear the water and the birds and it occurred to me to enjoy every minute of this walk,  if I was in an RA flare there is no way I could walk on the sand and I walked the entire beach and back and felt beyond awesome doing it!

 Being alone with my thoughts I realized I am already on week 4 of this new healthy lifestyle,  it really sunk in that I am doing it! I still have no pain and I really hope I am finally finding a happy middle. I really think some people can control their RA by eating certain foods and some can stop eating gluten and get relief. Some people can even control it by medication and not change their diet. I have really thought about this a lot and I think I need both. I don't believe I can control my RA by diet alone and the medication tries to work but not giving my body the healthy fuel it needs I am working against it.  My doctor said something to me that really bothered me, he said "I am sorry I have not been able to give you relief, but I'll figure it out"  it occurred to me if I don't do my part and lose this weight and move the joints and treat my body better I'll never get there and it's certainty not his fault. To be honest this did motivate me some because it really bothers me he thinks he is failing me when I truly believe he is a rare doctor that cares.
One of the awesome things about other RA'ers blogging is learning what works for them and twisting it to work for me. Last week I really found some great blogs that I can relate to and anyone out there whether it's an RA blog or your personnel life and obstacles, I thank you for sharing your life and experiences, you never know who you are helping.
So even though the week is almost over I'll still share the goals I worked on this week.

Goals for week 4
  1. Bring lunches to work this week.
  2. Walk two to three times a week
  3. Do dishes after dinner to get some increased activity in.
  4. If weather and time permit take my son for a walk.
**Weekly Reward**
Buy a book for my kindle on my wishlist.
Assuming the rest of the week goes good I can go buy new walking shoes for my monthly reward!  

"Above all, do not lose your desire to walk.  Every day I walk myself into a state of well-being and walk away from every illness.  I have walked myself into my best thoughts, and I know of no thought so burdensome that one cannot walk away from it. "   ~Soren Kierkegaard

Tuesday, April 5, 2011

Back to Normal

Felling pretty good again so how come I don't feel happy about it? I think I know it's a matter of time before ol Arthur is back. Sucks to feel this good and have it taken away and every month the bad days are outnumbering the good.  At my appointment last week my doctor asked me to call my insurance company and see if I would be approved for every 3 weeks, basically they requested this already and the letter the insurance company sent is really vague and not guaranteeing  payment. According to the insurance company I have been approved this whole time it's my doctors office that is not liking the wording. This really annoys me that I have been suffering the last couple of months and could have had treatment. When I called the billing lady and told her I was approved she still sounded unsure. So it comes down to this......if I flare this month I am done. They either give me the infusion or switch my meds because I can't do this anymore. DONE!

Some more promising news is the diet  I mean......healthy lifestyle is going great. Since my infusion I am walking 2 to 3 times a day and yesterday I did a workout DVD to get an extra workout in. Friday I took my son to the zoo and we walked around for almost 2 hours. The eating part is coming together nicely. I think my attitude has made a huge difference. Usually if I have a bad eating day I give up...failed. I am now realizing going out to eat and having something bad is OK, being good 95% of the time is the healthy way and having something bad once in a while is normal and even healthy. I also think hiding the scale was a good move. I know I am down at least 6lbs from my last weigh in but the next day I was up 3 and that's when I decided I can't be near a scale. So I won't know if anything has changed till my doc appointment April12th.

Goal for Week 3
  1. Keep on track with the healthy life style 
  2. Bring lunches to work every day 
  3. Eat a healthy breakfast 
  5. Increase lunch walk to 30min from 15min
  6. Add a workout DVD in or walk with son weather permitting  
                                                          **Weekly Reward**
                                                             Bingo on Friday

Almost a month in, I can't wait to get my new shoes lol  I'm learning to take it day by day and baby steps. It's all about mini goals to get to the end result :))

"I define comfort as self-acceptance. When we finally learn that self-care begins and ends with ourselves, we no longer demand sustenance and happiness from others."
Jennifer Louden

Monday, March 28, 2011

Counting Down

My infusion is in 25 hours and believe me when I say I am counting down! I wish it was Weds already and I would be back to feeling normal. It's been a crazy week. Mentally I feel a little better, I started to wean off  the Prednisone since infusion is tomorrow so I went from 20mg to 10mg. The sooner I can get off the better. Going down I noticed my mood is not so cranky.  My last post really was just my way of venting out the crabbiness, my husband said if he didn't know me he would of thought I was a total bitch lol  I really didn't intend for it to be so harsh but my blog is my way of venting and seeing a pattern to my thoughts and feelings so no offensive to anyone just my brain being cranky and needing to sort things out.  One thing it did for sure  was to help me realize how negative I was feeling so I put some of my CBT workbook into action and it really did help! I need to keep working on it to learn some more techniques!

Last week was a huge challenge for me. Not only was I battling a a horrible flare for almost 3 weeks but the Prednisone side effects cause increased appetite and crabbiness, add a little PMS in there and I had some huge challenges. Overall I think I did pretty good. I definitely can't say I failed at my goals. I didn't walk the last 4 days but as much pain as I was in I think I have to cut myself some slack and the most important thing is now that infusion is tomorrow, I have to recover and get back to the walking immediately.  Overall my eating was pretty good I need to tweak a few things yet but every failure is a lesson learned. I can honestly say in the past months I would have given up by now. RA would be in complete control.

Goals For Week Two 
  1. Keep on track with the healthy meals and snacks. 
  2. Keep on track with 2 to 3 walks a day and try to increase the time. 
  3. Start wearing a pedometer so I can increase steps in the day. 
  4. Try to incorporate some light weights. 
***Weekly Reward***
                                                  Get hair styled on Saturday for dinner night :)

So here we go with another week :)

“Most people give up just when they’re about to achieve success. They quit on the one-yard line. They give up at the last minute of the game, one foot from a winning touchdown.” H. Ross Perot

Wednesday, March 23, 2011

Dear Prednisone and RA

Dear Prednisone,

Thank you for the mood swings, acne breakout, and lack of sleep. At least you are taking the edge off the pain. After Tuesday we will once again part ways after a short weaning period because I just can't quit you cold turkey. I wish this time it's for good but we both know you will back.

Dear RA,
YOU SUCK!! Please include a gift receipt with this flare because I want to give it back!

  I can't express how much prednisone sucks, my RA buddies I know you know what I am talking about. This is the longest stretch in over a year I have been back on prednisone and I said I would never go on it again. I think that is a good indication how much pain I am trying to deal with. The prednisone is the only thing helping. Last week I started at 10mg in the AM by Monday I was adding 5mg in the afternoon and now I am up to 10mg in the AM and PM.  The acne on my neck is insane right now and I hate hate hate it!

I want to whine to every person I encounter but I  don't want to be known as the whiner or Debbie Downer,  so I resist as much as possible and because of this I feel myself pushing people away.  I'm suddenly annoyed at strangers and reading people's posts on FB and driving home is quite the ordeal when you hate all drivers in rush hour.
Trust me this is the prednisone talking.....I really am not that bitchy,  but this crabbiness is uncontrollable.  I feel like putting a warning sticker on my forehead  " Please don't joke with me, I lost my sense of humor" 
Worse yet is when the flare is this bad I feel like a horrible friend. I am suddenly the girl that is self absorbed. I can only think of me and  "My RA "   Hopefully I am getting better at recognizing it's happening and being a better friend and wife.  RA and balance is quite the challenge.

I hope in 10years I can come back and read what an adjustment living with RA was and how much wiser and in control I am with my disease. I hope my RA is in remission and weight loss goals were a success. I hope this last year is a learning process and it all gets easier as time goes on. I think everyone needs to hit rock bottom to learn from their mistakes and have the strength to make life changes. Perseverance!!
I really think I am there. I have finally admitted for the first time RA was winning and making me think negative, so lets try this instead:

Dear Prednisone,

Thank you for making my pain more tolerable. The side effects are a necessary evil to get through this flare but on Tuesday we wean off and say our goodbyes again. I hope this time it's for a good but we'll cross the next bridge when it comes.  The acne will clear up and lets be honest, I need to be more consistent on my skin care regimen.
The moodiness has been rough but I will take an extra 10 minutes to find some quiet time and take a breath. I will say hi to strangers and realize my friends are not all out to get me they just have different problems to tackle.

Dear RA,

I know you are trying to get the best of me this time around. But better luck next time, my will is stronger then you.

I hope whatever anyone is dealing with you can find the will to stay strong ♥

I am strong because I am weak.
I am beautiful because I know my flaws.
I am a lover because I am a fighter.
I am fearless because I have been afraid.
I am wise because I have been foolish.
& I can laugh because I've known sadness.

- Unknown

Monday, March 21, 2011

Happy Monday, it's time for goal setting!

And another new week begins. I'm feeling a little out of sorts today. Yesterday I slept the whole day away and still went to bed at 8:30. Not sure if this is RA fatigue hitting me or something else but even after all that rest I still feel like napping right now. Sometimes I think I can handle the RA when the fatigue isn't so bad but when I have them both it really sucks!   Last week I called my doctor and asked if there was any update on the insurance company approving the infusion early and it's not looking good. My doctors exact words were " I have to write a stupid letter to the insurance company" my guess is they will drag this out and it will be time for my infusion anyway,  I imagine my doctor is irritated he has the medicine to make me better but can't give it to me.  My next appointment is March 29th. This could be a long week. Friday I tried to take a walk for 15 min and barely made it half of the half  I did the day before. This is so incredibly frustrating to the have the motivation but my joints just don't want to play nice.
Overall I had an alright weekend my eating was on the bad side but I did get a walk in on Saturday and took my son to Betty Brinn that morning so there was also lots of walking there. I was feeling OK that night so I got some cleaning done, at least there was calorie burning going on :)  I have been trying to allow myself a cheat day on the weekend but 2 days wasn't good. Not even sure why I did it but the important thing is to recover and start the week out strong.and keep up the momentum.
I took my morning walk today and made the whole path, took me 5 minutes longer then usual since I had to go slower but I am feeling pretty good I got the whole thing in. Hopefully I can take an afternoon one also.

 I'm reading Jillian Michael's book at the moment "Winning By Losing" I'm hoping this will help with my desire to fail.  I'm at the chapter where goals need to written out by day, week, month and long term. And a reward system that is non food related.
So here we go!
Long Term Goal
  1. Weight in a healthy range for my age and height.
  2. Cholesterol in a normal range including HDL and LDL numbers in a  normal range.
  3. I want to feel energized and RA under control.
                                                         *** Ultimate Reward***
                                            Buy a new wardrobe to show off a new body and

Monthly Goal
  1. Go 4 weeks of walking at work on breaks and lunch. 
  2. Bring my lunch or buy lunch from fit food trainer. NO FAST FOOD!
  3. Cholesterol moving in the right direction. (appointment is April 12th) 
  4. Feeling better and clothes feel loose.
                                                     ***Monthly Reward***
                                                Buy a new pair of walking shoes.

Weekly Goal
  1. Eat healthy all week.
  2. Take 2 to 3 small walks a day.
  3. Bring fruit and veggies for snacks.
***Weekly Reward***
Either a pedicure or schedule a massage.

Daily Goal 
  1. Eat a healthy Breakfast, lunch and dinner
  2. Bring snacks from home
  3. Walk 2 to 3 times a day 
***Daily Reward***
Think I am going to stick weekly rewards :)

I think the goals are a really good visual to hold myself accountable and keep the motivation up. As you may have noticed I put nothing in there about the scale or numbers. I get very addicted to the scale and start to weigh myself 2 times or more a day. This needs to be about health and lowering my cholesterol and the weight loss will be an added benefit. I was recently told to take a tight fitting pair of clothes and put them in a bag and in 30 days try them on so we'll see what happens. 

"Goals are the fuel in the furnace of achievement."
Brian Tracy, Eat that Frog

Thursday, March 17, 2011

Another stepping stone in my journey

I had a physical late last year and the doctor felt my neck and went hmmmm "how long have you had this swollen lymph node?"  beats me didn't even know it was there.  RA meds increase the risk of lymphoma another fun fact about RA :)  So long story short she said I think you should talk to a surgeon to be safe and see what he says. He ordered a CT scan and 3 days later asked me to come back,  he said the CT scan showed numerous swollen nodes and wasn't really sure what to make of it,  I also had to do a gallbladder function test for a separate issue and he said he would review that when I had it done and decide the next step. I never heard back. I didn't have a good feeling about this doctor and I trust my rheumatologist completely so I decided to call him and see his take on it. He called me back immediately and said I want you to see an oncologist I recommend.......don't freak out this is just being cautious and getting a fresh opinion. This is the same oncologist who treats my aunt that had breast cancer, she praised him so I decided to follow his advice and call. He also is a hematologist. I once again had that feeling of he's going to say why are you wasting my time but I knew my rhuemy had called him so he seen the CT Scan which also scared me cause he wanted to see me!
I got in pretty quick and this guy really intimated me. Put me on the spot a few times and I was wondering why my aunt liked him so much lol  So he has his laptop and pulls up my chart and starts talking about my cholesterol and I am thinking ok I know he is hematologist also but he was really going on about my cholesterol. He even said your cholesterol should scare you more then a lymph node cause of your family history of heart disease. My family history is scary. My mom passed away at 49 from a massive heart attack. My grandmother was 55 also a heart attack and I recently found out my great grandmother was 34 which meant my grandma was 2 when her mom died.  This doctor was right I should be scared.  A lot happened at this appointment too much to get all the details straight but he did not sugar coat or pat me on the head and say comforting words he flat out said you will be the next in your family history to die too young if you don't change and if you don't die you will have diabetes. Wow this doctor just put an expiration date on my life. He said "I treat more then just cancer I treat the person. You want my help or want to keep on this path?"
You would think hearing this I would have made some crazy insane changes in my life. As for the lymph node he doesn't think it's anything to worry about but we are monitoring it and he wanted to see me in 2 months.

In this time I signed up for a woman's heart health program geared to prevent heart disease. I tried to eat right and diet. I failed and I failed again. This brings a lot of emotions out in me. I can't figure myself out mentally. In the back of my mind I know I need to do this my life is now depending on it, my son needs me here in 10 years as well as my husband and I still can't get it right. Once again I let RA win.
It kind of reminds me of being in a tornado, my life is spinning out of control and I can't grasp on to anything to make a difference. I get my infusion, I feel great! I eat right and I exercise and I feel good and 2 weeks later my meds wear off and I hurt. It hurts to walk, it hurts to cook it's hard to care. The flare is in control not me. This has been going on so long now that as soon as I have the first sign of the flare I am in shutdown mode, I start to eat bad, I stop exercising and my will to care is gone. There is a voice whispering you can't do it anyway so why care or even try anymore.
I had a follow up appt with the oncologist last week and I tried to explain this to him in a way he understood and in way he kind of went well when you fail we put you on drugs,  we will give you the chance to prove you can't do it. I was thinking at the time would it be so hard to say you can do it you just need to find the strength. But in a way I get why he did cause it really pissed me off lol  so I want to prove to him I can do it so I suspect he played a little mind game with me, but hey whatever works.  On the plus side to this appt he did recommend a workbook for cognitive thinking. He said this could be life changing and get me out of my negative thinking.

I took his advice very seriously and I ordered from Amazon that night and did 2 day shipping so I would have it while motivated.  I'll have to keep you posted since I just started,  but I can say that I already see a change.
A perfect example is when a flare is starting I immediately shut down. Today I started to hurt pretty bad at work and normally I would say no walk and I deserve a cheeseburger lol  Instead I thought what is not going for a walk going to accomplish? I'm going to hurt no matter what so how about a short one and go slow and I bet that accomplishment is going to feel better then a cheeseburger. Guess what? I did my walk, I went slow and took my time and yes I still hurt but RA took the loss this time. So if you have some really negative thinking like me I recommend this book.

"That which does not kill us makes us stronger."
Friedrich Nietzsche

Wednesday, March 16, 2011

So what is RA anyway?

Web MD explains it best: 
Rheumatoid Arthritis - RA for short, occurs when the immune system goes haywire and begins attacking joint linings. Rheumatoid arthritis is a chronic inflammatory condition that also affects other tissue, but the joints are usually the most severely affected. 
As rheumatoid arthritis develops, some of the body's immune cells recognize one type of the person's own protein as a foreign intruder.Cells called lymphocytes react to this protein. The reaction then causes the release of cytokines, which are chemical messengers that trigger more inflammation and destruction. With rheumatoid arthritis, the main target of inflammation is the synovium, the thin membrane that lines the joints. The inflammation also spreads to other areas in the body ultimately causing not only joint damage but also inflammation, chronic pain, fatigue, and loss of function.

  So there you have the medical meaning,  Let me further that explanation and say this is not your grandma's arthritis or the arthritis you think you have in your pinky finger. Tylenol or Alieve will not help me. My age has nothing to do with it, RA does not discriminate.  I can't take a magic pill and feel better. RA can affect any of my joints and during a bad flare it can affect them all at one time even my jaw, it can be so bad  I can't get up from the couch or pick up my son. The fatigue is usually the worst and no matter how many hours I sleep I just want to crawl back into bed and sleep forever. The pain can be constant and unrelenting. It messes with my head and I feel alone, hopeless and that no one understands.

  With all the bad I am still reminded I have a great support system. Other bloggers offer advice, facebook has some great connections to RA pages, my husband - I don't know how you put up with me half the time but I am thankful and blessed for the love and support that makes the good days that much better and of course my son who makes me laugh every single day no matter how bad I feel. My aunt that calls me weekly to check in and keep my spirits up and my cousin who texts me just to say how you feeling and my work buddy Wendy who puts up with my whining and is always there when I need her and of course my other work friends who take time to listen and my  facebook buddies who really mean it when they ask how are you :) and a huge shout out to to my RA girls Nikki and Charity you girls have been a constant source of understanding and support who take the time to listen even if you aren't feeling so great yourself. You know how I feel and accept the good and bad days and I hope I am as good of a friend!  This all reminds me I'm not alone with this horrible disease.

My RA story

I'm not even sure how long I have had RA. Officially I have been diagnosed for 18months but I suspect I had symptoms long long before. Even when I was 18 I had pain in my wrists and and my feet would hurt horrible after working but I thought this was all part of the hard restaurant life. Somewhere along the line it would get worse but a bunch of ibuprofen always helped. Eventually one of my fingers swelled up and doc said just take ibuprofen blah blah  the pain was tolerable and controllable. In late 2007 I got pregnant with my son and one day I noticed all my pain was gone, I thought wow pregnancy cured me!!  After he was born I felt on top of the world. Beautiful baby no pain and life was good.  Around the 4mo mark right before going to back to work I noticed one day I was really stiff in the morning and I couldn't get one of my sons bottles open and I knew things were coming back but it was still bearable. My boy slept through night pretty early on and for the most part I was ok but when I went back to work but the fatigue was something else I had never experienced and I was getting a good nights sleep.  I finally got to a breaking point and went to the doctor. Some initial blood work was done and at a follow up my vitamin D was determined to be at 9...30 is normal but 50 is preferred. She also said a test called SED Rate was high but nothing that raised flags. So she gave me a prescription  for vitamin D and said come back in 2 mo and we will recheck. Nothing got better but worse. At my next appointment still nothing improved and she thought I needed anti-depressants. So I agreed. Things got worse still and at every appointment I was told to come back and then at the last one she was pretty much dismissed me said vitamin D was up, Sed Rate was ok and other arthritis tests looked ok.  I left in a daze and thinking  nothing was accomplished and I feel worse!  That night I called my aunt and told her what happened and she said I really think you should see my rheumatologist. I debated and finally called and I really thought this guy was going to laugh at me and ask why I was wasting his time. A month later my appt came and he found joints I didn't even know hurt and said you have a lot of swollen joints and he put me on prednsone and re-did all my blood work. At my follow up he said to me you have rheumatoid arthritis there is no doubt in my mind.  I felt in a daze. He added methotrexate to the cocktail and another follow up..... no relief,  increase relief, switch to injecting the methotrexate instead of pills. NO relief.
4mo after diagnosed my doctor recommended Remicade the big guns. This drug is given by an IV called an infusion and takes 2 hours. I think this when I realized I have RA.  The first infusion came and that night I couldn't sleep. Ended up not being bad at all. I had to go back in 2 weeks for the next infusion and by that night for the first time in a year I walked down my stairs with no pain! The next infusion was 4 weeks later and then every 6 weeks. This was my miracle drug and I felt normal. Looking at RA message boards I felt like a fraud..... I felt normal and other people were in so much pain. Well my miracle drug started to wear off about 6months later. My doc increased the dose still had a flare that month. He had me come in every 4 weeks but the meds are wearing off after 2 weeks. This has been going on the last 6months. My doctor just called me last week they found the medicine was not staying  in my system when they did the last blood work which explains the horrible flares so soon and he is increasing the dosage at my next appointment and I am praying my miracle drug comes back to me!

"It takes a strong person to handle a strong disease"

Tuesday, March 15, 2011

Welcome to my journey

 So here I am with my very own blog! Where does one even begin?  I never thought I would be a blogger but lately I have been feeling bottled up inside and no outlet to get things out..... so here I am!

Some goals I have with this blog are to learn to deal with my auto-immune disease,  which has been a huge struggle lately. It's amazing how 2 letters "RA"  have completely taken over and controlled my life. I am no longer willing to let this disease win.
Secondly, weight loss has been a very hard struggle with RA so I hope to have a place to publish my goals and hopefully help others with the same struggles.
Third, expect random ramblings of the proudest mom to a healthy, happy and adorable 2 year old who has my heart unconditionally.

Lets talk about the title of my blog. Recently I had a conversation with a FB friend that I call my BFF (Best FaceBook Friend).  I'm not sure how the conversation got started but he knows about my RA and we were talking about weight loss and the word "perseverance" came up. For the heck of it I googled the official definition, I know what the word means I just wanted to see what the official meaning was and when I read the meaning I had a bit of epiphany and literally a light bulb moment where I thought I can do this! Why does RA get to win when it's me that suffers!!

So here I go with my journey of learning how to prevail with a chronic illness and accomplishing some goals I have failed at more then once and even more then a dozen times..... but giving up is not an option.
"Don’t be discouraged. It’s often the last key in the bunch that opens the lock."  - Author Unknown