Tuesday, September 4, 2012

30 Things You May Not Know About My Invisible Illness


Next week (September 10-16) is Rest Ministries Invisible Illness Week.  A few years ago, Lisa from Rest Ministries put out the challenge to fill out the following meme.  I took her up on that challenge.  This year, she answered hers again (you can find it here) and then compared the two.  I decided to follow suit.  My 2012 answers are below:

1. The illness I live with is:

Rheumatoid Arthritis and Fibromyalgia
2. I was diagnosed with it in the year:
RA in Augusts, 2005, Fibro in 2008-ish
3. But I had symptoms since:
Early 2005 on all counts
4. The biggest adjustment I’ve had to make is:
Limiting myself in terms of how much I can do in a day.  Chronic fatigue is a very real part of living with both of these illnesses and it's an evil cycle.  The more tired you get, the more pronounced the pain.  Pain in turn saps your energy.  Ten years ago I was go-go-go constantly, now, not so much.  
5. Most people assume:
A LOT of different things but the two biggest are:  A- Rheumatoid Arthritis is just like its very common cousin Osteo-Arthritis.  I cannot tell you how many times I have heard "Oh! I have arthritis in my _____________!  It's not so bad.  You should just___________!"  and B- I have a significant amount of medication related weight gain.  Long term medications like Prednisone and biologics can do that.  People assume that I am "just" getting "fat".  If it were as easy as diet and exercise- years of Weight Watchers would have helped me lose.  
6. The hardest part about mornings are:
Gathering enough energy and flexibility to get ready and go to work.  Most days just drinking coffee and throwing on something comfortable and then making lunch is all I can manage.  Especially since I have to wait for the flexibility in my hands to prep my fruits and veggies and in my knees and hips to get back upstairs to my clothes and such.  
7. My favorite medical TV show is:
I don't watch medical shows but if I see an ad for an interesting episode of Dr. Oz, I will DVR it.  
8. A gadget I couldn’t live without is:
My iPad. It keeps me connected to the world no matter how I am feeling.  When I have the energy I can write and interact, when I am sick I can watch Netflix or a movie.  Lisa answered similarly and she is SO right.  
9. The hardest part about nights are:
Getting comfortable and staying comfortable so that I can sleep a full night.  
10. Each day I take __ pills & vitamins. (No comments, please)
2-3 Tramadol, 2 Neurontin, 3 Flexeril, 1 Lunesta, 2 Tums, and 2 Vitamin E and a multi- so; 13 different pills and vitamins.  Plus my Orencia injections every Sunday.  
11. Regarding alternative treatments I:
I would love to try accupuncture- and my doc is okay with it, but there are no practitioners in my area who are on my health plan.  
12. If I had to choose between an invisible illness or visible I would choose:
Invisible. I don't handle pity well.  
13. Regarding working and career:
I never thought I would see the day when I was ready to give up work- EVER, but now I can see that in my not so distant future and it no longer scares me.  
14. People would be surprised to know:
Again, parts of Lisa's answer were perfect so I will borrow on hers:  How much pain I am in and how many parts of my body do not work all that well.  Many people assume because I do what I do, I must not be in that much pain. I am blessed I am not worse, but after 7 years of RA, I have never experienced a day of remission and every day I want to go to bed and stay there, but I never do. My brain is wired to keep on keeping on. 
15. The hardest thing to accept about my new reality has been:
Any limitations.  I am not good at limiting myself in any way and have a tendency to overdo it by just pushing a little further . 
16. Something I never thought I could do with my illness that I did was:
Accept and work with my illness.  When I was first diagnosed I felt like I had been handed a death sentence.  
17. The commercials about my illness:
Make me crazy.  They are completely misleading.  Though medications can help to slow down the illness, everyone in the RA community knows that there is no cure.  Let me repeat that:  There. Is. NO. Cure.  No matter what Phil Mickelson says or what the commercials show some actor doing- you will likely never see me able to walk 18 holes of golf carrying a golf bag or running on a beach.  I am lucky if I am able to bend over and tie my shoes without it taking half of forever to do the task and then get back up.   Also- no matter how well a specific treatment works for one person- it won't work for many more.  I have been through ALL of the DMARDS and most of the biologics.  Methotrexate worked wonders until it started damaging my liver.  Then it was back on the search again to find something that would work again.  
18. Something I really miss doing since I was diagnosed is:
Walk around the Zoo, a museum or any other place where there are stairs or hills without the assistance of a cane.  
19. It was really hard to have to give up:
Pretty much everything that requires that second burst of energy.  Things like, working all day and then going out with my hubby or friends.  After working all day, I just want to curl up and rest.  
20. A new hobby I have taken up since my diagnosis is:
Seek and find games to keep my brain active.  
21. If I could have one day of feeling normal again I would:
I don't like this question.  One thing that I have learned is that we gain a new " normal" and accepting that is a big step in not allowing our illness to consume us.  
22. My illness has taught me:
Gratitude.  I can be grateful for all of the supportive people in my life and all of the things I am still able to do.  
23. Want to know a secret? One thing people say that gets under my skin is:
"You would feel better if you just exercised more."  and "OH- my grandmother had arthritis in her_____"  
24. But I love it when people:
Truly want to learn about RA and Fibro rather than making assumptions about it from what they see on TV.  
25. My favorite motto, scripture, quote that gets me through tough times is:
"Gratitude unlocks the fullness of life. It turns what we have into enough, and more. It turns denial into acceptance, chaos to order, confusion to clarity. It can turn a meal into a feast, a house into a home, a stranger into a friend. "  Melody Beattie

26. When someone is diagnosed I’d like to tell them:
Do not listen to someone else's idea of where your illness will lead you.  If I listened to my first Rheumatologist I would be in a wheelchair right this moment.  You can make your own reality.  The important thing is to go through the stages of grief and then decide what you want out of your life and go for it.  Finally- DO NOT let everything you read online affect you.  You will find that some folks allow  their illness to be the only focus in their lives- that does not have to happen to you.  
27. Something that has surprised me about living with an illness is:
How much a positive attitude can affect your illness and how you live with it.  
28. The nicest thing someone did for me when I wasn’t feeling well was:
Built me a "nest" in my bedroom so I didn't have to leave if I didn't feel like it.  
29. I’m involved with Invisible Illness Week because:
It's so important that people understand that just because we look "okay" doesn't mean that we are.  Day to day, hour to hour how we feel can change and the more people that understand that, the more acceptance there will be.  
30. The fact that you read this list makes me feel:
Grateful that you care and would take the time to understand what changes my life has undergone.  

If you are not someone who lives with in Invisible Illness, I welcome any questions that this has raised.  If you ARE someone who lives with one of these illnesses, I encourage you to copy this meme and answer it on your own and then link us to it.  I would love to see your answers!  

4 comments:

Barbara Allan said...

Dear Julie,

I am touched by how honestly and lovingly you are able to describe living with RA. You have a strong spirit to be able to hold such a strong space of compassion for yourself and others in the midst of this difficult disease.

ConqueringArthritis said...

Dear Julie,

I am touched by how honestly and lovingly you are able to describe living with RA. You have a strong spirit to be able to hold such a strong space of compassion for yourself and others in the midst of this difficult disease.

ConqueringArthritis said...

Sorry about the double post, I'm still learning how to leave comments.

Julie Faulds said...

Thanks Barbara! It's tough at times to appreciate the "good" things" that have come from living with this- but they are there!