Tag Archives: Exercise

A Day in The Life

Standard

6:45 AM:  Alarm starts buzzing and gets a swift (albeit soft due to RA fingers) whack to the snooze button.

6:55 AM:  Alarm buzzes again.  Swift soft whack repeated.

6:59AM:  Cat slinks into room, jumps on bed, and meows to say “for real, already, I NEED FOOD.”

7:05AM:   Combination of alarm and needy cat avert whack to snooze button and I groggily rise and assess cat bowl situation. I catch myself walking gingerly because I’m not sure how my feet feel yet to see that there is plenty but she demands a top off.  Occasionally, opening the lid of the container hurts. But what can I say…she’s a little diva.

7:10AM: Shower – problems opening shampoo and conditioner bottles which has influenced brands that I buy. Initial daily assessment of my aches and pains. 10 fingers, only 2 or 3 sore  = success. 10 fingers, 8-10 hurting = bad mood. Same with toes, knees, shoulders,wrists although I only have 2 of the last three mentioned.  Having 10 of the last three would not be bad mood but rather inevitable reality show stardom.

7:15AM: Hair drying, makeup application, clothing selection, longing glances back at the bed.  Minor difficulties with sharpening eyeliner with little pencil sharpener, sometimes picking a different pair of pants or shirt depending on condition of fingers and tightness of buttons.  Occasional difficulties on bad mood days with opening and squirting out toothpaste.  On really really bad days, it hurts running my fingers through wet tangled hair.  Thankfully, that hasn’t happened in quite awhile. Knock on wood.

7:30AM:  Breakfast time.  Usually soy yogurt.  No difficulties here unless you consider the lack of variety of soy yogurt available in the Charlotte metro area a difficulty.  (I would like flavors other than strawberry and blueberry and I hate fruit on the bottom.  But that’s all I can ever find.  In 3 different grocery stores.)

7:45AM: Time to head to work.  Minor difficulties in locking both front and back door.  When it’s cold, I can’t lock the deadbolt on the back so I lock the switch on the outer back door (which is actually more secure- found this out the day I locked myself out and a locksmith couldn’t get it open) and always difficult to turn the key in the deadbolt on the front.

7:55 8:05AM:  Arrive at work.  If I’m the first person there, opening this lock is always difficult.  Luckily, I’m never the first one there. 

8:00AM – 12:00PM: Meetings with clients, sales calls, admin work, conference calls.  Occasional problems on bad mood days with the following: typing, assembling presentation handouts, sending emails on Blackberry, fatigue, walking long distances on client site tours.  Minor difficulties every day with pulling and putting files up into tightly packed file cabinets, discomfort caused in knees by sitting in same position for too long, aching shoulders from sitting at desk.

12:00PM – 1PM: LUNCH.  No difficulties here.

1PM- 5PM:  Meetings with clients, sales calls, admin work, conference calls.  Occasional problems on bad mood days with the following: typing, assembling presentation handouts, sending emails on Blackberry, fatigue, walking long distances on client site tours.  Minor difficulties every day with pulling and putting files up into tightly packed file cabinets, discomfort caused in knees by sitting in same position for too long, aching shoulders from sitting at desk.

5PM- 6PM:  End of day meetings/conference calls/ occasional networking events/ drive home.  Occasional problems on bad mood days with peeling and sticking name tags on myself at networking events and also fatigue.  Minor difficulties every day with unlocking front door.

6PM- 10PM:  Dinner with friends, Happy Hour, dinner at home, gym, and other miscellaneous events.  A lot of times, the gym gets cut.  I’m most comfortable on the elliptical- good range of motion exercise for joints if you take it easy on resistance.  Difficulties with grasping free weights- I’m learning how to use the machines. Still afraid to try classes. Minor difficulties with cooking- it’s uncomfortable to grasp a knife to cut, inability to exert force to open jars, nervous to lift heavy baking dishes in and out of oven with hot pad due to not feeling like I’m able to grasp baking pan as well with hot pad. Fatigue is an occasional problem with all above except Happy Hour.  There is no fatigue in Happy Hour.  (Said with same intonation that Tom Hanks uses in A League of Their Own when he says ‘there’s no crying in baseball.”)

10:15PM: Wash face, take meds.  Minor difficulties opening pill bottles. 

10PM:  TV time in bed with feline.  Occasional problems getting comfortable with shoulders and wrists depending on if/where cat chooses to lay on me.  Occasionally discomfort caused by this makes sleeping impossible.  End of day assessment of aches and pains. 

Wash, rinse, repeat.

I’m a little sad that I can’t remember any other way now…

But I still feel very blessed.

The 4-1-1

Standard

Long time, no write!  

I’ve been busy…working, playing, traveling….living!

Until I can get something meatier up, I will give you a little list of some things going on:

1.  Doctors- I have (finally) found a new primary care doctor here.  I’m picky about all doctors unfortunately but have found a good one who asks the right questions and doesn’t roll his eyes when I keep asking mine.  I am scheduled to see a new rheumatologist tomorrow am….fingers crossed that I like this one as well.

2. Work- I have been swamped.  I don’t post many specifics about work for obvious reasons but I’m in outside sales and my territory was expanded a couple weeks ago.  So I’ve been all over the place trying to strum up business- and actually got a commission check this past month.  (Yay- I haven’t lived on just base salary in years and it SUCKS.)

3. Fun- oh gosh, where to start!  

-I went to the lake for a long weekend for a friends birthday.  It rained the whole time and we ended up playing marathon games of Cranium  in front of the fireplace which sounds super dorky but was hysterical!  

-I went to watch a whitewater kayaking competition here in  Charlotte which was fascinating.  I’d love to try that someday but even without RA, I’m sure I’d end up leading off the 6 pm news (Woman drowns in freak accident etc.) Ha!  

-I went on a ropes course AND a zipline.  Obviously, the ropes course had to be modified some but it wasn’t too bad although my hands hated me for several days after.  The zipline was AWESOME and I’m so mad I don’t have pictures.

-I went back to SC this weekend to see a friend and had a blast.  We were going to a birthday party and, unclear on which house the party was at, had the wonderful experience of walking into the WRONG party in the WRONG house.  We were a street off….oops!

-Next weekend, I’m going to Baltimore for a wedding and am so excited to see my college friends.

So now that you’re all caught up, I’m going to try to not be such a slacker!

Get Ready for Invisible Illness Week: Beginning Sept 14th

Standard

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Rheumatoid Arthritis

2. I was diagnosed with it in the year: 2006

3. But I had symptoms since: May 2005

4. The biggest adjustment I’ve had to make is: slowing down, cutting back on physical activities.

5. Most people assume: that I’m being lame or lazy when I cancel plans or skip the gym. I’m not- it’s because I hurt.

6. The hardest part about mornings are: my body needs sleep. The mornings in flares where I haven’t had enough restorative sleep- waking up in pain doesn’t bode well for the day to come.

7. My favorite medical TV show is: Grey’s Anatomy. No RA reasons- McSteamy reasons.

8. A gadget I couldn’t live without is: my TENS machine.

9. The hardest part about nights are: getting comfortable during a flare.

10. Each day I take __ pills & vitamins. Right now, 3. At my worst, it’s been upwards of 11.

11. Regarding alternative treatments I: have tried a lot of them but unfortunately, my body responds best to traditional medication supplemented by alternative treatments.

12. If I had to choose between an invisible illness or visible I would choose: invisible all the way. Being in pain makes you feel very exposed- being able to hide that anything wrong is a comfort.

13. Regarding working and career: hard to balance sometimes but something I could never not do.

14. People would be surprised to know: I’ve learned a lot about myself through having RA.

15. The hardest thing to accept about my new reality has been: accepting that it’s forever. Forever is a very long time.

16. Something I never thought I could do with my illness that I did was: continue running. In 2007, I did 5 5K’s back to back! 

17. The commercials about my illness: generally tick me off. They’re generally off base in every way you can be off base. They feature older people playing tennis. Hello- twenty somethings get this too!

18. Something I really miss doing since I was diagnosed is: the ability to be completely spontaneous.  Not having to plan for rest or take medications with me.

19. It was really hard to have to give up: boot camp classes and high heels.

20. A new hobby I have taken up since my diagnosis is: um, blogging.

21. If I could have one day of feeling normal again I would: go wild.

22. My illness has taught me: not to sweat the small things. We all have struggles. Be sympathetic to everyone- you have no idea what they’re dealing with inside. 

23. Want to know a secret? One thing people say that gets under my skin is: “but you’re so young.”

24. But I love it when people: say “please tell me more.”

25. My favorite motto, scripture, quote that gets me through tough times is: “Pain is temporary, quitting lasts forever.” -Lance Armstrong.

26. When someone is diagnosed I’d like to tell them: it’s going to be ok.

27. Something that has surprised me about living with an illness is: there are ways to modify virtually everything to make it something you can do. 

28. The nicest thing someone did for me when I wasn’t feeling well was: bring my friends to me one time when I felt awful and couldn’t go out to see them. 

29. I’m involved with Invisible Illness Week because: it’s so important that people understand us!

30. The fact that you read this list makes me feel: cared for. I appreciate that you want to know more about something that affects me everyday.

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com.

A little Labor Day post on my labors

Standard

If I’d known ten years ago that I would have rheumatoid arthritis today, oh the things I would do!  I would spend a small fortune on couture 5 inch hooker heels and prance around in them EVERYDAY until I started having problems.  Going to the carwash?  Awesome- silver 4 inch Loubatin’s just to make a spectacle.  Church?  How about some conservative 5 inch black polka dotted Jimmy Choo’s?  Going dancing with friends?  Prada, Prada, Prada! Doesn’t that sound magnificent?!? Yes, these are the things that this 29 year old RA patient who has, at times, been accused of being slightly vain fantasizes about.

 Then there are things that I chose for myself before this whole RA thing that I’m clinging to like a madwoman.  Things that are very important and self-defining; things that I can’t just let go of like a pair of shoes.  Things that if RA messes with, I say “sorry, dude, these are non-negotiable.”  Running would be one of these- I still do very infrequently- but relish the moments when I can.  My job would be another one of these things.

I love that my job is very fast-paced, stressful, and completely the result of MY efforts.  In today’s environment, I have to triple my activities to yield 50% of what I’ve produced in years past.  To which I say:  Awesome. Bring it.  Rock on, Type A.

I do not love that my RA, when in flare mode, sometimes does not work well with a job that is very fast-paced, stressful, and completely reliant on MY efforts.  In a flare environment which is generally twice a year, I have to sometimes cut back on my activities which (somewhat embarassingly) still yields 50% of what I’ve produced in years past. To which I say: Suck it, you traitor. Leave me alone.

I know, I know.  You can say it.   It’s weird as heck that I am more ok with the whole financial debaucle of late making me have to work harder than I am with the whole RA/flare debaucle of late making me have to chill out some.  

If I’d known ten years ago about my RA, would I have chosen the same career path?  Most likely, yes. But in all honesty, IF I’d known, I probably would’ve tried to go to med school.  I feel like a part time rheumatologist most of the time anyway, why not get some initials to match?

New Way RA

Standard

Go on over here and check out New Way RA, a great new resource for those of us who won the auto-immune lottery and for our loved ones.  This is an online talk show hosted by Deborah Norville, whose mother had RA, and features several chats with experts on nutrition, activity, the emotional side of it, and even career coaching.  I’ve seen the DVD and think it does a great job of breaking these things down in layman’s terms…..YAY for good RA PR. :)

Thoughts…

Standard

I’ve been pretty reflective lately about a bunch of things; amongst them, the events and circumstances surrounding my diagnosis, and how I’m just kinda shocked about where I am in my life right now.  Don’t get me wrong- I’m doing good- it’s just if you’d told me ten years ago that today I’d be dealing with all of this, I would never have believed you.  In fact, sometimes I still am shocked and in a lot of ways, I still haven’t really dealt with a lot of the things I feel about my RA.

10 years ago, I was 19.  I was super active and probably too skinny.  I took dance lessons still (ballet and jazz) and I went to the gym to watch the hot guys play basketball.  I was kinda flighty and spacy, emotional and sensitive, and more interested in having fun than much else.  I hadn’t discovered running yet.  I’m pretty sure I thought that those aspects of my personality would still be there today.

10 years later, I’m trying so hard to be active. I have 10 pounds to lose although I’d love to lose 15.  I do lots of run walks.  I want to dance again so badly but I’m not sure if my feet can handle it.  I still go to the gym to watch the hot guys play basketball. Flightiness and spaciness has turned into sarcasm and witty banter.  Overly emotional and overly sensitive- things that would’ve upset me several years ago really hurt me today.  I think that’s actually the worst part.  

Don’t worry- I’m not in a bad time right now.  I’m just trying to process things.  I really miss the Amanda of 10 years ago. Heck, I miss the Amanda of 5 years ago.  I don’t think I’ve ever really stopped to mourn that loss so I guess that’s what I’m trying to do now.

Feeling good…I think

Standard

I’m afraid to say definitely because the past few months have been like being on a roller coaster with a stomach full of candy apples, corn dogs, and blue slushy.  Blllleeeeecccchhh.  Don’t you appreciate my visuals?

I like my job.  It’s nice to have a job where I don’t have to manage anyone, have measurable goals that don’t change by the hour, and don’t wonder on my drive in if I’m going to get there to find the doors chained shut. 

I love my condo.  It’s in an old neighborhood- very Gone With The Wind esque with gigantic gracious trees, old massive houses, and (what I’m most excited about) A PARK that I can walk to in less than 5 minutes that has free outdoor concerts several nights a week.  I do not love having to fit a 3 bedroom house into a 2 bedroom condo.  But I do love the $500 I’ve made on Craigslist in the past 2 weeks.

My RA is doing better.  I’ve spent the past few months feeling like I was getting ready to flare and then nothing would come of it.  And then feeling like I was getting ready to flare and then nothing would come of it.  Rinse and repeat. I still feel a little bit of it but not as badl.  I live next door to a friend from college who has celiac disease and she’s teaching me about gluten free diets.  I’m thinking about giving it a whirl but probably won’t.  This girl loves her carbs!  My friend is also super into yoga and I’m probably going to try that, if I can find a class that isn’t competitive.  The last class I went to felt that way so that’s why I haven’t gone back.

 I’m a little worried because my new health insurance doesn’t kick in until Sept 1st and I have exactly enough Humira to get through as long as I stick to bi-weekly.  Knock on wood please!

All in all, off to a good start.  I think.