Sunday, February 5, 2012

Where the heck have I been? sure does fly by doesn't it?  My last post was in September!  Nearly 5 months ago! So here's the skinny on what's been going on with me!
     14 weeks until I graduate from Nursing school!  Whaaatt????!!:) Crazy, I know!  I can't wait.  Of course I have already applied for a BSN program that hopefully will start in 2013, so atleast I'll have a year off!  I will continue my education and eventually go for my Master's as well...but at least I'll be working when all that happens! This semester is all about organization and really taking on the role of the RN.  We also get to have some great community experiences outside of the hospital that will help us in discovering what interests us.  I am definitely leaning towards Diabetes Educator...but we'll see what else peaks my interest!
     Been living with RA (officially) for nearly 7 months.  In some ways it feels longer.  The methotrexate wasn't cutting it, as I was still relying heavily on Prednisone to keep the flares at bay.  I had a couple of bad flares around the holidays.  I took photos of my super swollen, red foot and took it to my Rheum and asked him what my expectations should be with the Methotrexate.  His reply (while looking at my photo)..."Um, NOT THIS."  So, needless to say, I wasn't surprised when he said he thought it was time to add a biologic on to my medication regimen.  Enter....Enbrel!  I wasn't upset at all, as I just want to feel better.  After my last flare on Christmas Eve (Merry Christmas to me), which left me unable to walk, I would probably poke a hot stick in my eye if you told me it would help with the RA...but I digress.  The thought of sticking myself in the thigh or stomach once a week doesn't really bother me.  Sure it's not ideal, but since I've been in school I've been giving injections to patients often in their abdomen, so I figured atleast I've had the practice.  And hopefully it will make me more compassionate to my patients, as I'll know what it feels like.  So, I've taken 2 doses of the Enbrel and am approaching the 3rd injection this week.  So far I think the only side effect I'm experiencing is headaches.  They aren't bad, so I'm hoping they will subside.  However, we did up the Methotrexate (I wasn't at the full dose of 20 mg) and that has been making me feel nauseous...which is how I felt when I first started Metho...I'm hoping that it will subside once my body gets used to the additional dose (because it did eventually subside in the beginning).  I have also been weaning down on the prednisone.  This is very exciting and scary for me, because every time that I've tried to taper down on the pred I have had a flare.  I've never been able to go below 10mg.  Well....I'm down to 5!  This is exciting for me!  I know at any moment it could change, but I am embracing the fact that I've been down to 5mg for 3 days now!  I feel pretty good!  I'm hoping to get down to 2.5 and then just take a small dose once a week or so...that is the goal that the Rheum has set for me.  We'll see.  I would love to be off Prednisone!  My father-in-law is on Plaquenil and does not need to take Prednisone. HOWEVER, I know that every BODY responds differently, but a girl can dream right?  So that's the RA saga:)
     My fitness has had some definite downs over the past 7 months.  My body is not as tight or lean as it was last summer.  This has been a real journey to "love myself" and be thankful for the body I have.  I tend to be a perfectionist and this has definitely taken me down quite a few notches.  I am always trying to be perfect "perfect grades, body like a fitness model, etc."  These are nice thoughts, but not if it makes you crazy!  RA has definitely told me to appreciate the days that I CAN workout, and to embrace them.  And to also be happy for the days where I can just be moving!  I do think moving is key, but I've always been an "All or Nothing" girl, which is hard, because RA forces the "NOTHING" on you, and I need to readjust that "Nothing" to "a little bit"...I'm definitely a "work in progress".  I am also cutting myself some slack as these last 14 weeks of school are intense.  I may sign up with my personal trainer again when I am finished with school, I'll definitely have more time and it will be nice to have that structure again!
     I've also been trying to cut "sugar" out of my diet as much as possible as I know many people with RA have had luck with this diet modification.  I've also hear that going "gluten free" has helped as well.  I definitely want to try this at some point, but want to give Enbrel a chance to get in my system and want to see if it works before I start throwing other things my way..and then I won't be able to know which is working!
   Well, I'm going to close, but I will try to post more often than not, as I've been partaking in forums, and looking at other RA blogs and have found a lot of comfort and support in these, and hope that others who read my blog will feel the same way.

Until next time....

Wednesday, September 7, 2011

New health?

It's been nearly a month since my last post!  Bad blogger alert!  A few updates.

1.  Started fall more semester after this one (WHAT????)!
2.  Celebrated my 14th wedding anniversary yesterday:) that guy!
3.  Dare I say it?  I think that the methotrexate is working???
4.  After 2 weeks of illness (strep followed by bronchitis) finally feeling great and back working out!

Let's start with major flare-ups.  There I said it.  I'm not sure if any of you other RA sufferers feel this way, but it is REALLY hard to say that sentence out loud.  It's like if I say it...I will jinx myself or something...silly but don't you know what I mean?  It's like your afraid to embrace it.  I almost started to think that I made myself feel some wrist pain because I was so nervous that I was going to flare.  Well...I stopped that nonsense.  I am embracing the good.

I started a new workout program with my trainer and am excited to get rockin' on it!  I actually started it in August but August was such a wash out with my flare-ups, etc...that it really didn't amount to much.  I would like to maybe take part in a competition if I can get this RA under control.  Maybe that would help get RA out there as well.  I'm not sure that I've seen any write-ups on any bodybuilders/figure competitors who have spoken out that they are RA sufferers.  I know this might be a big goal, but it could be a great goal and maybe get even more people informed about RA.  I know some might be skeptical but what the heck...why not!

Looking forward to this weekend as the hubby and I will no doubt go to dinner and have a fun day together (hopefully checking out a new vegan restaurant that just opened).

Have a busy day planned today as I have to get some homework/projects done for school.  Lucky it's very interesting....I am currently reading "Unbearable Lightness" by Portia De Rossi about her struggle with an eating disorder, and then have a day planned of movies that deal with psychological issues (ie. What ever happened to baby Jane, One flew over the Cuckoos nest, Temple Grandin, etc)...should get me geared up for my neuropsych class!

Let me leave you with a wonderful quote that I found in a magazine that I cut out and look at OFTEN!

"Life's challenges are not supposed to paralyze you; they're supposed to help you discover who you are." - Bernice Johnson Reagon

Love that quote:)

Thursday, August 11, 2011

The game of RA

Sorry I've been so's been a long time since I've blogged.  Time for some updates!

Finished the intense summer class of Med/Surg 3 AND did well!  It was super stressful but I have never been so thrilled to finish something in my entire life!  Looking forward to the fall semester and a bit of a lighter load.

Started a new job!  I am finally in the healthcare field!:)...I found an amazing place to start my work in healthcare and am enjoying this new journey thus far.

The only downside to this summer of bliss is my nemesis RA!  I have had many ups and downs this past month.  I have begun my medication but have had many flare ups.  At my last appointment I pretty much limped into the Rheums office and was close to tears.  He could tell that I was very frustrated and tried to reassure me and told me to not give up....reassuring me that the medicine wasn't completely in my system yet, and that of course we would reassess in a few months in case we needed to add a biologic to my regimen.  Also, he instructed me to use the prednisone in a more effective way.  I have been very nervous about using prednisone because of all the side-effects one encounters.  He reassured me that this was not a "long-term" solution, but merely something to offer me comfort while we let the methotrexate kick in.  Taking his advice I am definitely feeling much better.

Here's the interesting stuff I've learned though.  The weather DOES seem to affect my husband has become the "weather bunny" and alerts me when a low front is coming through...because that seems to mean a flare up for me.  Also, I am thinking that after I take the methotrexate I have increased joint/muscle pain for the next day or two.  I didn't put this together until I did some research online and found that a number of people experience this.  This will definitely be something that I discuss with the Rheum.

Something else I want to comment on is the stress I've encountered with the RA and training for my new job.  Training for a new job can be stressful in and of itself, but add a disease that will rear it's ugly head with no warning?  Now that's a level of stress that I can't even begin to describe.  I'm sure those of you who have RA can relate to this.  There was a day of training where we were going to be practicing patient biggie right?  Well....that was a day where my left wrist decided it was going to flare up and not function.  This sent me into a major panic.  How was I going to get through this? How could I fake it without letting anyone know?  It's one thing to share your condition with co-workers that you've worked with for sometime, but it's a whole other story to divulge this while TRAINING for a new about lack of job security!!  Long story short, I got through it.  I think my endorphins kicked in or the universe was just looking out for me, but I got through it and was even told that I was "strong"....ha, go figure!  Thank god, all those weight lifting days I had done was paying off:).

I had my latest scare just this week.  On Tuesday evening (the day I take my methotrexate), I was at work on my 3rd official "on the floor" training, when about halfway through my shift my left hand/wrist started to become "nonfunctioning".  To make matters worse, I was on the Ortho floor....lots of patients with knee replacements, amputees, etc.  Luckily I was working with a precepter, but we were still transferring patients, etc.  The fear that I felt for those 4-5 hours was unbelievable.  I barely got through it.  The pain was intense and I was trying desperately to hide the fact that I couldn't move my left hand.  It was a struggle to say the least.  I have such compassion for those that deal with this on a daily basis.  It was so very frustrating and frightening.

I've decided RA is truly a game, and I am just trying to learn all the right moves so that I can manage this.  It's a strategy like chess, I need to plan ahead my meds and the days that I may need more prednisone.  Or plan what days I will be home so that I can relax on the bad days and let my body do it's thing.

This is a game that is neverending with constant, everchanging rules...I just need to start winning a few rounds!

Until next time....:)

Sunday, July 17, 2011

2 more weeks...

I have 2 more weeks until this summer semester is OVAH!  I can't wait!  Finally got results of my 2nd exam back and I feel pretty good heading into the last 3, but I need to keep the momentum going!  After this little note I will be hitting the books!

Had a great weekend celebrating my hubbie's b-day early.  Went to the Chicago Diner for a late lunch yesterday.  De-lish!  Radical Reuben with a shared Peanut Butter Puck at the end.  It was so great...It's truly the best veggie/vegan restaurant in the city.  Topped off the evening with a little bit of shopping.  Got a pretty fun dress for my class reunion (in 2 weeks).  Now I just need to find a fabulous belt, take my old sandals to the cobbler (yep, I said cobbler...they do exist people!) and I'll be good to go.  I've been looking forward to that weekend for months now.  Less so for the reunion, but more so because I will be spending the evening with 2 of my dearest, oldest friends from high school.  We are actually sharing a hotel room and planning a fun evening together, topping it off with a late dinner after the reunion (so we can of course dish about said reunion event! LOL).  I need my girls and am so excited to catch up with them, so much to share.

I've been feeling pretty good lately as well.  I'm sure it's the Prednisone.  I am actually going to taper down a bit starting this week.  I just want to use as little as possible until this Methotrexate hopefully kicks in.  Thor my crazy thumb still likes to make his presence known usually sometime during the day, but my feet and wrists, etc. have been feeling pretty good...hope it continues.

I am making the hubby breakfast in bed this morning so I better close and get some studying in before I treat him to some yummy, blueberry/protein pancakes!  I am just going to throw something together and make it with oat flour and some protein powder to make it a bit more healthy (as he's been hitting the gym pretty hard lately, so I don't want to thwart his efforts).

Here's to another week closer to being done with this semester:)...

Friday, July 15, 2011

Lions, Tigers, and Methotrexate....oh my!

Yep, I said it.  The "M" word.  I'm new at all this but I have gathered that Methotrexate is a hot button topic.  I'm not an expert and I believe that every "body" is different.  It's already hard to make decisions about your health without everyone judging or dismissing your choices, and I know this drug garners a lot of talk/discussion.  I just wanted to say that because I know we all have different and various viewpoints on the subject, but I'm just merely sharing my experience on this crazy RA journey, and I respect and admire all the decisions each of us have to make with this crazy disease.

SO having said that.  I went to the Rheum on Tuesday and am now officially beginning "treatment".  When I first met with the Rheum I was dead set against Methotrexate and I really wasn't happy about the idea of taking Prednisone either.  He gave me his thoughts and info, and told me to research/think about it, but that he wanted me to start with Methotrexate.  He shared side effects, concerns, etc.  So I did research and slowly came around to the idea of trying it.  ESPECIALLY when on Monday I could barely move my hand at all...nonfunctioning pretty much.

So...I took my first dose on Tuesday with some low-dose Pred (to help w/inflammation until said Metho kicks in).  Let me tell you that I've never felt so serious about taking a pill before in my life!  I literally stood there with the pills in my hand and paused, took a big nervous gulp and thought..."here we go".  It's amazing to have hope and fear all in 4 tiny little pills.  It's really interesting but I know that part of my initial reaction to the drug was..."Chemo drug?  Heck no!"  But then I remembered that most drugs have awful side effects and really what was freaking me out was the label "chemo".  It also freaked my husband out.  He's had experience with Chemo drugs as he is a Hodgkin's Lymphoma survivor.  But then I remembered how I felt when he was going through his treatment.  I hated what that chemo did to his body, but I also felt that it was the key to keeping my husband with me in the future...and for that I'm grateful.

So now I wait.  I must admit I felt a wee bit nauseated the next day and a bit yesterday...but nothing unbearable.  Thanks to the Prednisone my hands have felt MUCH better, and my sore feet are slowly feeling better as here's to hoping for some relief.

All in all it's been an eventful month for me.  I've been very lucky to have a lot of supportive people around me as it's been so stressful dealing with this prognosis AND school (which by the way ends in 2 weeks! Woo-hooo!).  I am looking forward to a little break before my fall semester begins...catching up with friends, cooking for the hubby and just enjoying life.  Because even with all the STUFF going on in my life I am a lucky gal and to not get up and be grateful for my day is a day's too short, no?

Okay, enough procrastinating, time to get on the bike and get some exercising in...:)

Sunday, July 10, 2011

Me and my big thumb...

I've been studying all weekend.  Cardiology is intense.  Up next is Respiratory, which will be equally intense I'm sure!  3 more weeks until this summer course is over....3 more weeks!  That will be my mantra!

Did pause in the action to make the hubbie a delicious Vegan Un-beef stew.  Sweet potatoes, carrots, mushrooms, seitan.  Good stuff.  He very tentatively asked if I could make him "something" to take up with him (as he will be working out of town this week...he's often out of town during the week for work).  Poor guy, he hasn't had a home-cooked meal by yours truly in months.  Don't get me wrong, he can cook.  But as he says, "he doesn't like to, and he's not very good at it".  I on the other to cook, BUT with school we've agreed that all bets are off and I just won't be doing very much cooking.  It's a good thing we don't have kids as they would have to fend for themselves.  Ha!

Did manage to get a really good walk in this a.m with my little guy, Lenny.  Probably about 4 miles or so.  Took about 1.5 hours with all his piddling and breaks that he needed (It was rather hot, and I didn't mind the breaks either).  Am a little sore but all in all feeling pretty good.  Which brings me big thumb.  The thumb is just big.  I may have to nickname my thumb, and I don't mean thumbelina.  Like maybe Horst or Thor, or something big and burly sounding.  It's just so big!  The knuckle is like double the size of the other thumb.  The pinky has subsided but my right thumb is just plain stubborn.  Does anyone else have a perpetually inflamed big, swollen thumb or other digit that just likes to scream, "Mwahahahahah, I am RA and won't be ignored!"?

Yep, Thor it is.

Thursday, July 7, 2011

Muscle & Fitness Trainer: BodyBuilding Diet For Muscle Gain And Fat Loss

A good article:).  I'm a big believer in the 5-6 small meals a day (plus it's fun).  You don't have to starve to be in great shape...working out means your body needs those calories to lift all those weights, etc.  Win win:)

Muscle & Fitness Trainer: BodyBuilding Diet For Muscle Gain And Fat Loss