Tag Archives: invisible illness

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.