Every year I make a resolution to be better at updating this site. I receive so many emails with hopes to reply to many more than I actually get to. I feel guilty when I continually push this site to my "to do" pile. The reason I started this was for the many reasons you all swing by. Fear, confusion, hopelessness, and more. The bad news, RA sucks and I am a slacker. The good news, I am not updating this site as much as I would like because....................I am busy living my best life! And so will you:)
I cant believe how long it has been since I have updated this site. I want to let everyone know how things are going and where they are headed. In the last year I quit my hospital job and began travel nursing. This had always been a dream of mine but I had so many fears. What if I get a flare up while I am away, what if I cant handle it, what if no one likes me, what if I make a mistake, what if, what if, what if. Well, All of those things happened and I survived! So number 1# DON'T LET RA HOLD YOU BACK!
I am ashamed at how long it has been since I have written here, but sometimes life just gets in the way. I wanted to share some updates on how things have been going on my end. Life has been great!!!! My RA flares have been few and I am living a very active life. I graduated with my BSN last year and am working on my masters. I have altered my diet a great deal which has allowed me to stop my medications. I have went vegan. Never in my life did I think that would happen but here I am! Sugar, alcohol, and dairy are the hardest on my joints. When I indulge on occasion I pay for it. But a girl has to have a little fun! I hope this finds all of you well. I am trying to respond to emails slowly but surely. When my semester ends I will be doing a much better job here I promise. Take care!!
So, yesterday was my
6 month check up with my Rheumatologist.
I was dreading it. I had not been taking my meds like I should (I was taking them every other week). I knew I had gained allot of weight after a bought of seasonal depression, a demanding semester of nursing school, terrible premenstrual syndrome and a new boyfriend. I thought she was going to lecture me. I was wrong.
She took me off it! Thank you god I am off that stuff. It was causing me to lose two
days a week to fatigue and grogginess. I can not afford to lose that while in school. I no longer have to worry about all those side effects!!! I am elated. She now has me on weekly Enbrel only because I am doing so well. I am so grateful. This has given me a serious burst of motivation, which I desperately needed.
The last few months my premenstrual symptoms have been off the charts. for about two solid weeks I eat from sun up
to sun down, suffer from depression, my moods are all over the place, my joints hurt, and I am always nausea's and have GI issues. I don't know why the change but my hormones are wiggity wack! I am hoping birth control will regulate this. I see my NP next week and am going to see what kind she suggests as I really don't want to gain anymore weight.
Does anyone have any input on birth control, hormones and RA????
When I was weighed yesterday I was shocked to see how much I had gained. It slowly made its way on my body on my body quietly, pound at a time. I had the worst case of seasonal depression I have had in some time, but I didn't want to face it and just kept eating. I started dating someone and you know how that goes, dinner dinner dinner. Combine this with being in nursing school and I am now a house. I have always struggled with weight, it is my curse. My way of punishing myself for reasons I don't know. I will now, like always, find my way to the treadmill and start to rid myself of this weight. Next year, I will hopefully have better insurance, I will get phrophalactic antidepressants and some cognitive behavioural therapy and hope this doesn't happen again.
HAVE A PAIN FREE WEEK!
Life. It seems to get in the way sometimes. Trying to juggle school, friends, family, work, illness and everything in between, I sometimes forget what it is all for. My purpose. This week I recieved a lovely e-mail from a mother whose daughter has been suffering for many years. It could not have come at a better time. It reminded me of how I felt not too long ago. Scared, alone, desperate for answers. I had this disease but couldnt find anyone to relate to. My head was spinning. That is when I decided to start this site. To provide a place were other girls like myself can find hope. Without hope I would not have gotten through all this. I feel more and more like my old self everyday. It is not without sacrafice and sick Carrie is a completely different person than healthy Carrie. I dont get it right all the time, I sometimes do things to my body that I know I shouldnt. But this is how I live a life that still feels normal. A life that is not filled with pain and fatigue. I hope that you all know, we will survive, we must. There is no other option but to go forward. When those around us dont understand what it feels like to writh in pain. To want nothing more than to wake up in the morning with energy. To live a day where the smallest amount of stress doesnt send waves of pain thorough your body. Those moments when you struggle to breathe from inflammation but say nothing as you fear just speaking of it will send you into shock. If I have learned anything, I have learned that only the sick understand what it is to be sick. Others can say they understand, but they dont. It was hard for me to not fault others for this, but now I have learned my purpose. My purpose is to care for the sick in any way possible. Be it as a nurse, as a friend, or as someone who will for the rest of my life, be sick.
I just passed my first nursing class of the semester and I have learned a few things about being a student with RA.
1. If you have RA you should avoid stress. I dove in head first! Nursing school equals stress. I am managing well, but the pain is a bit more noticeable these days.
2. Homework KILLS my hands:( I need someone to write for me. I take breaks constantly to relive the pain, however this leads to me taking double the time to do homework.
3. We covered RA in a chapter this semester and I was asked to speak to my class. It was great to share! But, I was reminded how little people know about this disease and how everyone compares it to their grandmothers hip pain or their own knee pain. If it were that easy.
I am still struggling explaining my disease to new people I meet. I feel like carrying a pamphlet:) i know it could be much worse. I am grateful how well I am doing, despite the stress and abuse I am putting my body through. Thank you body for bearing with me lately. I will be gentle:)
Have a pain free week!
I don't recall much from this week but I do recall saying I would be back to normal by Friday and I was right! If someone would have asked me on Sunday how long it would take me to feel better, I would have said weeks. However, I woke up this morning feeling good as new. Steroids are my life savers. I learned from this flare to not take small doses and wait till I can't sleep from the fever and pain. Next time I am firing off the big guns from the start! I am grateful to be feeling good again:)
On another note, I am starting a belly dancing class to add a different routine to my cardio. I have NO desire to shake it in front of anyone but I realize I must find creative ways to workout. Until all my inflammation is gone belly dancing and swimming it is. I may sneak a kayak session in, shhhhh don't tell my shoulders, they ate gonna be pissed:)
My first significant flare up since diagnosis and I have now reached the stage of being pissed, which hovers right over depression. If I could punch my flare in the face I would, but I would only be punching myself. This flare up is like a house guest that has over stayed his welcome. I am glad you stopped by to remind me that I do have a chronic illness and I must take good care of myself, but I get the point and it is time to leave. I will celan up the mess you are sure to leave behind, just go.
Here are just a few examples why I am now at the pissed stage.
1. I had a date during the week right around when my flare up was starting. I didnt want to cancel becuase I was pretty excited and my body was still doing ok, my mind however was on a whole other planet. You know what I am talking about, it is like being high, but not the funny laugh at your cat kind of high only a teenager knows, but the holy crap I am paranoid, are those the cops? So, I didnt cancel my date, and I am sure I made a fool of myself. The brain fog is the worst! I would keep this pain any day if my mind would just be clear.
2. "You dont look sick". I hear this at least 5 times a day. God Damn it! I know I dont look sick, but my joints are on fire, I cant sleep and am pretty sure that if you ask me to spell anything with more than 3 letters in it, I will fail.
3. I screwed up at work all day today. I was making orderst that were not even close to the order the customer gave me, I could not lift more than 2 plates at a time, dropped 1 out of 3 things I picked up, mumbled and looked at customers like they were from another planet when they asked me a question that my RA fogged brain could not process.
4. Hello, is my Doc around? I dont know what to do. I called my Doctor, but while I wait what th heck do I do? I am working to the best of my ability, getting small stuff done, trying to resemble my normal self as much as possible, but what else can I be doing? Do I just wait? Should I pray? Drink some weird potion? Do a tribal dance? Sleep? Guess I will just keep taking steriods until I here from my Doc or the roid rage begins, I wonder which will happen first? ;)
So, I have decided I am going to rest, because I really need it and while I am not sleeping I am going to develop a serious plan of attack against this flare up. I will snort steriods if that is what I have to do to get rid of this thing. Cross your fingers my Doc gets back to me stat so I can get this taken care of.
****excuse misspells or typo's, I am much to tired to copy paste and spell check*****
I cant believe how long it has been since I have update information. Life just likes to get in the way sometimes. I am back! I hope this finds everyone well.
First, I would like to talk about medication dosing. I currently take my Enbrel injections and Methotrexate once a week. I feel like I am in remission and would like to do an every other week dosing. Has anyone had luck with this? My Rheumatologist wants to keep me dosed how I am, but my previous rheumatologist was going to take me off the Enbrel eventually. If anyone has any feed back on this it would be greatly appreciated.
If you are on Facebook check out the page Athletes with Rheumatoid Arthritis. This is awesome! I cant belive what people are able to do living with RA. It is a reminder of how strong the human spirit truly is.
Have a pain free weke