Tag Archives: invisible illness

A Day in The Life

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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.

I needed to see someone who looked like me.

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Wednesday, January 11, 2006

“Your x-rays still show no new bone growth on either foot so we can rule out a stress fracture.  Your bloodwork, however, was much more revealing.  Your rheumatoid factor is a 68; it should be less than 20. Your CRP and ESR are also elevated.  These results, in conjunction with symmetrical joint swelling in your feet and hands all point strongly to rheumatoid arthritis.”

Blink.

“I’m going to start you on several medications today.  Celebrex for pain. Prednisone is a steroid that we’re going to start you on a high level and taper you down.  This will reduce the inflammation while the other medications start to work.  Methotrexate is a chemotherapy drug.  It can have some pretty nasty side effects so we’re going to start you low and build you up to 8 a week.  I’m also giving you a combination folic acid and vitamin B to help combat the side effects.”

Blink.  Chemo???

“We’re going to do this for two months and then re-evaluate to see if you need a biologic.  How do you feel about giving yourself shots?”

Blink.  Giving myself shots?  For what?  I don’t even know what it is that I have. Please just let me get out of here.   

I’d never even heard of rheumatoid arthritis.  When I thought about any sort of arthritis, all I could picture were the elderly folks my church youth group would visit with at the holidays and my great grandmother.  I mean, think about it: that’s generally what’s shown in advertising. At the time, I had no clue that there were many types and that they could affect people my age.  

To make matters worse, after getting home from the doctor that day, I decided to “educate” myself on rheumatoid arthritis.  How, you ask?  By using the END ALL BE ALL most reliable and authentic source of all information in the entire universe: ye merry olde interwebs.  Needless to say, I was much better off “uneducated.” I had no idea at the time that there was such a general misconception of what RA is.  To this day, I see pharmaceutical ads on TV and in magazines that are just wrong.  Hello Enbrel ad from 2009- I shall never forget you. But at the time, I took them as fact.

So I cried for hours and then took my raccoon eyed self to the mall where I dropped $200 on the cutest pair of incredibly fugly orthopedic dress shoes.  I remember thinking ‘so, I guess this is life now. So long running.’ Then I decided my best course of action was to hide this from everyone and would continue to do this for over 2 years.

Let’s just say this was the worst decision I could’ve ever made a decision that made everything harder and based on my own uninformed ideas and leave it at that, ok?  

So, what does Rheumatoid Arthritis look like?

Specifically, Rheumatoid Arthritis was 26 on that day.  A friend, a daughter, a sister, a coworker.  Loves running, kickboxing, reading, dancing. Very reluctant to let go of any of these things. Very sensitive and self conscious when she received  a diagnosis that she didn’t think she was representative of thanks to horrible misconceptions.

Except that she was.  Right on the money actually.

Demographically, RA is 20 – 40 at onset and two to three times more likely female than male.  Rheumatoid Arthritis is an autoimmune disorder in which the immune system attacks joints.  It is chronic yet also very treatable through combinations of very strong medications with many patients (yours truly included) able to eventually return to almost normal.

Yet the arthritis the public generally attributes to ALL autoimmune arthritis conditions is osteoarthritis- the condition caused by wear and tear  from aging or overuse and the ONLY one where “just go take a Tylenol” may yield positive results. 

That’s frightening.

“Buckle Me Up!” International Autoimmune Arthritis Movement is an up and coming non-profit dedicated to helping those suffering from autoimmune arthritis conditions by increasing understanding and awareness through education, partnerships, and support.  We are trying to raise money to finance legal fees and startup costs associated with filing 501(c)(3) paperwork.  

I can’t imagine how much this would’ve helped me when I was newly diagnosed.  Having information and support and people to talk to would’ve made everything so much easier and less scary.  And believe you me, it was a very scary and lonely time.  

It would mean the world to me if you would visit www.bucklemeupmovement.com/donate to read more about this and to donate $1.

The answer is YES.

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Normally, I get a huge kick out of reading the search terms that bring people to my blog.  Some of them are absolutely hilarious and  strangely inappropriate.  But today, I wish I had contact info for the one I just saw.

“Does RA ever get better?”

Yes, my friend, it does.  

It is such a shock to get a diagnosis like that.  I could expound on that forever but you all know exactly what I’m talking about.  

My first reaction to it was deny, deny, deny.  And then take a long boat ride down my favorite river in Egypt.  And then more denying!  

But eventually, once the shock wears off and the treatments kick in, you get some relief.  And once you start to get the physical relief, you can begin to search out the emotional relief.  

It is entirely possible to live a very fun and full life with rheumatoid arthritis.

So yes, it does get better.  Virtual hug!

H1N1 Vaccine

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I laugh that I can keep up with the world by simply looking at my friends’ Facebook status updates.  A few recent favorites include “Jeff intercepted a memo reminding Delhomme that he plays for the Panthers” and “Megan is beginning week 3 of (f)unemployment.”  

Today, I noticed probably 8 updates about the H1N1 vaccine.  They ranged from the funny (Jack SAYS GET VACCINATED DAMMIT) to the mundane (Rebecca is going to her 24 week OB appt and getting her H1N1 shot).  It is the latter which really upset me.  I am upset because, within 20 minutes, she had 4 nasty comments from people berating her for putting her child at risk, implying that she’s a bad mother, and then it quickly spiraled into a discussion about vaccinating children.  No, discussion is not the term. Virtual flogging is probably more appropriate.  It was cruel and I can’t imagine how she felt coming home from her appointment to read that.

Then I thought about some of the reactions I’ve had from people without RA to  the medications I’ve taken.  My favorite was when someone asked me what I took and then, in front of people, shook his head and said “poisons!”

To medicate or not to medicate: that is the loaded rheumatoid arthritis question.  And a very personal one at that.

I will be the first to say that I’ve been on some pretty hardcore medication for over 3 years.  I have also tried going med free and using alternatives.  At the end of the day, I simply have more success on the medication.

Do I read RA blogs that advocate little to no medication?  Yes.  Do I find value in them?  Absolutely. To be completely honest,  I’m quite jealous of people who are successfully med free.  But after reading the research on the long term effects of uncontrolled rheumatoid arthritis (uncontrolled by meds OR uncontrolled by alternatives),  I have decided that, for me and me alone, I need to take the medication and supplement with alternatives.  

Same concept with the H1N1 vaccine. For me (and obviously for my friend), benefits outweigh risks.  I’m not telling anyone what to do (although I have made the blanket statement at work that anyone who doesn’t get the vaccine, comes to work sick and gives it to me, if it kills me, I will come back and haunt you.  Poltergeist style. I say this even though I am getting it.  I just have luck like that.)  

I will say that I think everyone in the at risk groups should seriously consider getting the H1N1 vaccine.  That’s my opinion.  Doesn’t mean it’s right. If you choose not to, that’s your decision and I respect that we are all different people.  

But, at the risk of hateful comments, I ask that you make an informed decision.  That’s all. RA Guy has some great links explaining more.

Traveling with RA: Success! Finally!

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Traveling with RA can be a pretty unpleasant experience for me. Once, I went to the beach on methotrexate and got so nauseous at dinner that I had to leave.  I got sick and cried myself to sleep.  Then I went to the mountains and was so stiff and uncomfortable with the cold and snow that I ended up leaving early.  Again, tears.  It’s just so unfair that I can’t always enjoy the same things that everyone else gets to.  Sometimes I even dread it.

Last weekend, I went to Baltimore for the wedding of one of my favorite people and to hang out with a lot of my other favorite people.  I was absolutely determined that RA was not going to get the better of me.  And…it was an absolute blast!  Someone told me earlier this week that “everybody just looks so happy in the pictures” and they are right- and that was the whole weekend, not just for pictures.  I could tell you story after story about how much each of these ladies means to me….but that’s a whole separate post about support systems. They mean the world to me. Sorry I’m gushing but seriously, they rock. Wedding 

 

I slept well both nights- which is unusual for me in a strange bed.  I was able to still be comfortable even with pouring down rain and cold- I was really stiff Sunday night but that could’ve been from sleeping on the plane.  I haven’t restarted my methotrexate yet (did this on purpose so I could have alcohol) so I didn’t have much trouble eating.  Dancing?  No sweat.  Flip flops in my purse!  Scariest part of the weekend- walking down a steep hill in spike hills in the pouring down rain.  I had visions of my butt hitting the cold, wet concrete and somehow hurting my hands….but I didn’t.  I will admit that I did hit a little bit of a wall on Saturday night after the reception- but I think someone without RA would too after flying, staying up late, dancing like crazy, and just having a lot of active fun.  And it wasn’t the bone crushing mental fog inducing fatigue I usually experience but more of a I MUST EITHER SIT DOWN IMMEDIATELY OR GO TO BED IMMEDIATELY.  

Sure, Monday was hard.  I got up late and went to bed early.  But this is the most successful trip I’ve had since being diagnosed.  No crazy “I just don’t have the energy to get out of bed but did anyway and spent the rest of the day in a hateful mood”, no pain, no vomiting, no having to skip out on things because I just don’t feel great.  Whew!

What did I do differently?  I actually planned for all of these things to happen. Seriously- I convinced myself that I was going to feel like crap.  I started taking Airborne, Vitamin C, and Zinc supplements several days before.  I even considered getting a B-12 shot the day before I left.  (I didn’t though- didn’t have time.  But may in the future.)  The night before I left, I went ahead and started taking Aleve.  I had Thermacare heat packs, Biofreeze, and Prednisone with me.  I don’t know if it was the whole immune system jolt I gave myself or the whole “if you wash your car, it’s going to rain” thing that seems to be true of my life, but someway somehow I was able to finally enjoy myself in spite of RA.

Now, if I could only see my peeps more often.  Hint, hint.

A picture speaks a thousand words…

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So, out of curiosity, what goes through your mind when you see this picture?

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On the surface, I bet you would say 5 pretty girls who had dinner, drinks and went dancing to celebrate a 30th birthday.  And you would be correct.

But what do you think if I tell you this picture also illustrates the following:

  • 1 case of Rheumatoid Arthritis.
  • 1 case of Celiac Disease.
  • 1 case of ADHD.
  • 1 who has a good friend with bipolar disorder.
  • 2 who are close to people  with PTSD.
  • 3 who have close family members who have severe depression.
  • 2 who have lost close family members struggling with depression to suicide.

Bet you weren’t expecting that.  

Is this some sort of invisible illness support group?  Nope, although we did go to a martini bar named Therapy.  I hope you’re appreciating that little nugget of irony like I did.

This is merely a cross section of life.  And I imagine that this would be fairly representative of all of us.  Just because you can’t see these illnesses on our faces or bodies doesn’t mean that they don’t exist.  In fact, I’d wager that because you can’t see them, it makes  existence harder for those who suffer from them because there is no sympathy or understanding because there is no cast or stitches.  Nothing visual to suggest anything is out of the norm.

On the flip side, because you can’t see these illnesses, you can hide them and only disclose them to people you feel comfortable with.  

And it still lets you take great pictures with your friends in bars named Therapy.

Aren’t they pretty? :)

Get Ready for Invisible Illness Week: Beginning Sept 14th

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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.