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........


  1. I am happy to hear that you are doing better. I am still learning about this disease since be diagnosed in July of 2010. I get very scared when I am around people that are sick. I keep a bottle of germ-x in my purse & right at the front door of my home.

  2. Oh Genny, miss you day at a time. It isn't winning or losing or even giving up is knowing no matter what, you are going to have to pick yourself up and do..enjoy what you can, when you can. Prayers and love.

  3. you just described my day and my life.
    please help me, im a nurse but RA has won. please this is worse i have been. i took prednisone leftover from my sons hives he had one time.. i slept all day... couldnt do aannnnything but lift my head up and it was a nightmare cause pain still so bad. living on advil.. scared of meds.. enrel closed up my thought. but RA is killing me. depression i cant erase and i dont take anything. only thing left is my occassional sex drive. i cant give that up when i feel good. i need to work.. i have weekends off but can never catch up with anything. i weigh 106 lbs and dropping weight and muscle... letting the flare win. literally cry weekly if I can pain has my brain on emotional turmoil and i can never think straight. people jusst think Im lazy and dont get it.. until i found your blog... you get it. may I say Im so glad your here.. please know you are just like me. I hope you feel better sweetie. i never felt like this. Thank you for making me not feel alone. All I can do is reach out into computer land when i lift my head up next to my laptop and pray someone understands. I dont know if this helps you but you certainly helped me. Stay strong.

  4. Dutch- I hear ya, it's so scary every time I am around someone sick but when it's your own baby you don't even think about it :( Hope you are doing good also!
    Laura- I miss you too! It's so hard to pick up again after every flare but thank you for the encouragement!! xoxox
    Donna- your post made me tear up! It's so hard for non RA'ers to understand even when they think they do. I try so hard not to complain so I don't sound like a broken record and so thankful for my fellow RA buddies cause I can scream all day and they understand the need to vent. Are you seeing a rheumatologist? I understand you fear of the meds but my doctor put it to me this way....does the side effects of the drugs outweigh the pain you are in and affect your quality of life. I agreed to go on Remicade. I really think you should have a heart to heart with you rhuemy and find out the damage happening to your joints by not taking anything and really consider your options. Feel free to e-mail me anytime and we can talk more. Hang in there!!