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