What My Life Is Like with Illness

Fibromyalgia is invisible, so most people obviously don't always remember that I even have it.

I in no way blame them for that. But I do admit to getting grumpy {yes, I get grumpy!!} when family forgets, specifically my husband and my father.

I have more sympathy when other people tell me they're in pain than I used to, but when it's someone I'm close to I honestly struggle with it. I feel an innate need to speak up and remind them what I'm going through and how much daily, all over pain I have every moment. Every day. It never goes away. It flares up and settles down, but no matter what it is always, always there.

So... it really bothers me when Tim or my dad forgets {or at least they're forgetting from what I can tell}. I've always had this thing in me that made me feel like I needed to prove myself to the men in my life. That if I didn't, they'd leave and get sick of me.

Behind every fake smile, behind every genuine smile... no matter what I'm feeling like that day, I never have a 100% pain free day. Every single part of me hurts constantly.

I know that's a hard concept to grasp. Sometimes it still baffles me.

But what I love is that it never baffles or surprises God. He knows. He understands. And that still, small voice of his that speaks into me when I'm quiet enough to listen... He always gently reminds me that He knows and is carrying me through this time.

That doesn't make it automatically easier, but it settles my hurt and anger. It settles my frustration when I'm ready to lash out and tell people to stop complaining about their pain. If they only knew what I was going through.

And if I only knew what other people with worse pain were going through.


Ouch. Whenever God speaks that into me, I'm reminded to not be so quick to speak. After all, I have no true idea of what's going on in someone else's body. The reality is, I'm just speaking up because I'm being selfish. I'm being blind to the needs of others and only caring that I make sure they understand me.


I find this really {really, really} hard when it comes to my marriage. I know Tim has had to wrestle with a lot as a result of my Fibromyalgia too. I know that neither of us are the same person we were when we got married. I know that we both have days where we are ready to throw in the towel. I know that he's got a good heart and that he loves me, but sometimes, in my most sinful moments... I actually feel myself refusing to draw close to him as a defense mechanism.

Because why would anyone want to persevere with me in this life-long journey with Fibromyalgia? I don't want it, why would he? He didn't choose this. 


We are learning what "for better or for worse, in sickness and in health" really means.

We know that with God, all things are possible. We know that if God is for us, who can be against us? We know that He will give us the strength and ability to get through this.

But in our dark days, when the Fibro is too much for me to even get up out of bed... we have our moments. When the Fibro has me glued to the couch while he's stuck doing all the housework... I feel more guilty than I ever thought possible. And there's nothing I can do about it.

It's awful. It's demeaning.

And yet, I know that in the end, God will redeem this too. He'll redeem every battle we fought in our marriage. He'll redeem my Fibromyalgia so that the world will see that He is God... for His glory & His name's sake.

He has poured out His grace on us, and I am unceasingly baffled as to why Tim is still even standing next to me. God's grace is sufficient for the least of these. And right now, I for sure feel like the least of these.


For other Chronic Illness Awareness Week topics, visit this website, go to their Facebook page, or visit Bloggers Unite for Chronic Illness Awareness. 

Sick, Fibro Flare, & Thankful

Last night I got weird sick.

It was pretty random. I was feeling off with some Fibro stuff throughout the day, but otherwise pretty good. I'd swung by a couple of friends houses after work to help bring them some cheer, and then headed home. Upon arriving home and the adrenaline wearing off, my Fibro pain was flaring up like crazy.

Later I realized it was not all Fibro related, as I began to get delirious and totally crazy. I don't remember all of the details but at one point I realized I was laying on the bathroom floor screaming for Tim. It was awful and so bizarre.

Tim helped get me set up in the spare bedroom that has a spare TV around 9 or so, that way if I got bored or couldn't sleep, I could prop myself up easily and watch. It was really helpful to help me not focus on how delirious I was feeling {which was making me freak out and have anxiety}, and be able to fall in and out of sleep.

Unfortunately, I had a really fitful night of sleep, tossed & turned like crazy, was exhausted, had really vivid dreams that I woke up feeling were totally real, spilled my water all over the bed & myself at 3 am, and finally managed to get several hours of sleep just before it was time to decide whether or not work was in the picture for me today.

It was definitely not. I slept some more, checked in at work about some urgent stuff, slept again, and finally awoke around 11 feeling better. After lunch I was feeling much better and spent the rest of the afternoon working from home.

And then randomly around 7 or so tonight, the same wave of weirdness fell over me. Nausea, dizziness, weakness, fatigue, horrific pain, etc. I'm starting to think it must all be Fibro related after all. Oh Lord, get me through this flare-up!

I'm so thankful for Tim's help last night in taking care of me, I could not have gotten through it without him. Thank you sooo much honey!


I've been wanting to post for this year's Invisible Illness Awareness Week, but I just haven't had it in me yet. Please find other information about this here at the Invisible Illness website.

National Fibromyalgia Awareness Day - Part 2, Delayed

National Fibromyalgia Awareness Day lands every year on May 12th. This year, it snuck up on me a bit because of our vacation. I thought I'd spend little blips of time throughout the day posting a few, short posts about Fibromyalgia.

Instead, Blogger went down in the morning, my original post was deleted and then resurfaced sometime late yesterday, and I wasn't able to post again until yesterday. It was weird. Then I didn't trust it much and didn't want to post much until it seemed to really be back up and running.

So here we are now. A delayed post, but still one I very much want to write.

Fibromyalgia for me has been quite the journey. It was one I fought & struggled with for the first couple of years. I was in denial, depressed, walking around like a zombie, so sick of doctors and tests, ready to give up, wanting to die, feeling so badly for my husband because I felt awful that he was stuck now with a very sick person not something he deserved, and was really mad at God for allowing it to happen to me.

I tried chiropractic care, accupuncture, different vitamin regiments, rheumatologists, and a handful of ideas people kept sending my way. It was stressful and exhausting. I was losing all hope. Nothing was working.

I met a lot of people in the blogging community who were really struggling. And no matter where I was at in my relationship with God, I always knew he was in control and wanting to grow me as a person. I was challenged with a lot of questions, gave advice the best I could or was just a listening ear, and in so doing, was immensely helped myself.

And then somewhere along the way, God really got a hold of me. Things changed, God opened some doors for me, and the depression and denial lifted. I started regular exercise and nutrition counseling. It was like a whole new world.

I know it's different for each of us fighting Fibro. Some can't do much, some can. I don't know why I have this or why mine isn't as bad as some {the people who see me daily consider me pretty high-functioning for what they know Fibro could be}, but I do know that God is in control. I'm thankful it's not worse. I'm thankful for the blessings I do have. I found hope by realizing I had to start clinging to what I was given instead of what had been taken from me.

Instead of sitting around sulking, I've decided to truly live my life and enjoy it while I still can. I'm not going to let Fibromyalgia rule my life.

I am more than Fibromyalgia.

I am a crazy, weird, fun-loving, nice, genuine, kind, upbeat, excited, sometimes cranky, thankful, sensitive, sweet friend to many. I have to look at the positives, I choose to focus on the good instead of the bad. I am a follower of Jesus Christ who has the strength of the Lord in me.

I am more than my illness. I am more than a woman in daily pain and fatigue. I am more than my list of symptoms.

I am Rochelle. I choose each day to serve and honor God and bring him glory in whatever situation I may face. He's allowed this in my life for my good and his glory.  If I can bring him one iota of glory through my Fibromyalgia, then I have served his purposes.

With Fibromyalgia, I can still lift my head high and proclaim to the world...

To God be the glory! 

Fibromyalgia Awareness Day 2011 - Part 1

I'm never quite sure how to start talking about Fibromyalgia Awareness Day.

It's different than Breast Cancer Awareness, MS Awareness, etc, because everyone knows about those things. Fibro is not known by everyone nor is it treatable like many of the others. But it's also an awareness day that many people don't know about so it's still at the awkward stage. And those who do know about it just know it as the "pain illness".

Most of us with Fibro feel like it's somewhat useless because we're spending so much of our lives trying to help spread the word anyway. Educating people about how it's more than just being in pain all the time. How it's a whole host of things, and how that's such an individualized list.

It's hard not to feel defeated or like we're those "condition that's all in the head" people. We get labeled instead of sympathy by so many still in the medical community. It's frustrating.

I still get the oddball questions and "what on earth is Fibromyalgia and how do you really pronounce it" questions. These by the people who know I have it and know it's pain-related. Their knowledge of what it really is remains minimal.

I do want to help in that. I just don't know really how to go about it because most of the time I start to feel like a broken record.

But I still think it's a good day to have. Just not sure how to go about spreading the word. So while I think about it, this post just is what it is....

Here's an awareness day post that I found to be really helpful:
Fibro Haven

Invisible Illness - Some Info about Fibro

Did you know:

1. It is pronounced fy-bro-my-AL-ja.

2. It affects an estimated 10 million Americans.

3. Most people with Fibro tend to look completely healthy on the outside.

4. Fibro comes with a host of other symptoms, including but not limited to: moderate to severe fatigue, sleep disorders, irritable bowel or bladder syndrome, acid reflux, problems with cognitive functioning {some of us affectionately refer to this as Fibro fog}, headaches and migraines, anxiety and depression, environmental sensitivities {depending on the day I'm super sensitive to spicy smells/foods, flowers, lights, loud noises, temperature swings to the very high or very low, etc}, skin sensitivities, dry eyes and mouth, ringing in the ears, dizziness, vision problems, neurological symptoms, impaired coordination, and so on.

5. There's no real known cause. There are guesses like it might be genetic and that it appears to be brought on more often than not by a physical trauma of some kind.

6. There's no known cure, so treatments focus on helping to relieve symptoms and improve function.

7. It is generally not a progressively worsening, debilitating syndrome although it can be.

8. It affects mostly women (about 80%) but it hits men too.

9. Fibro was once thought to be a mental disorder.

10. The term Fibromyalgia is taken from Latin and Greek words:

• Fibra (Latin) means fibrous tissue and has to do with painful tendons and ligaments
• Myos (Greek) means muscles
• Algos (Greek) means pain

Information taken from the National Fibromyalgia Association website and Fibro Center. For more information, please also visit these Fibro sites.

Invisible Illness - Thankful

I am thankful for my thorn. My Fibromyalgia.

Not every day. Not every moment. But overall, I truly am thankful for it.

On another note, I'm really tired and drained. I'm doing better than I had been {because of this}, just spent. So to do another post about Invisible Illness Week, I decided to link to a couple other posts I've done that help to explain some things for me.

Grocery Shopping, Part 1
Grocery Shopping, Part 2


 

30 Things About My Invisible Illness...

...you may not know.

Read last year's post first. A few things have changed so I thought I'd point those out:

4. The biggest adjustment I’ve had to make is: last year I said "not lifting/moving things". That is for sure no longer true. This year it's been trying to get on an organic, all natural, whole foods diet. It was tough at first, but now when I'm following it like I'm supposed to be, I feel amazing!

11. Regarding alternative treatments I: am focusing on regular exercise, strengthening my core muscles, and eating healthier. I feel so much better when I'm doing this consistently. With my workout schedule, it's much harder to get to a chiropractor regularly. But I'm okay with that; this is what I've chosen to concentrate on for now.

15. The hardest thing to accept about my new reality has been: learning my limitations all over again. Each time I am able to move forward in feeling better, I'm reminded that I'm still limited and have to figure out my limits again. If I push way too hard, I fall down even harder. But I'm always having to relearn that new line that I cannot cross without getting extremely ill.

16. Something I never thought I could do with my illness that I did was: a kickboxing class. Oh yeahhhh baby!!! Totally empowering. I couldn't do every move or the intensity, but oh wow. It was so great to be able to once again do something I loved that I thought I might never be able to do again.

17. The commercials about my illness: see here.

18. Something I really miss doing since I was diagnosed is: having a life without any repercussions.

19. It was really hard to have to give up: my pride.

21. If I could have one day of feeling normal again I would: clean my house inside and out, go through every cubby hole and get rid of a bunch of stuff, dust like crazy; go for long bike rides with hubster; and run around in circles with my nieces and nephews, lifting them into the air, and playing at the playground with them.

22. My illness has taught me: to be kind to strangers more often, to help people in stores who look like they could use a hand, to not be afraid to ask questions that might make me uncomfortable if it looks like a person really could use encouragement or help.

23. Want to know a secret? One thing people say that gets under my skin is: if you just would have exercised & eaten right from the beginning. Gahhhh!! You wanna be punched?

24. But I love it when people: tell me how much healthier and happier I look.

25. My favorite motto, scripture, quote that gets me through tough times is: Isaiah 43:2 and "Life isn't about waiting for the storm to pass. It's about learning to dance in the rain."

26. When someone is diagnosed I’d like to tell them: Hang in there. Fight for yourself when no one else is.

27. Something that has surprised me about living with an illness is: it's made me so much more empathetic about general life trials too.

28. The nicest thing someone did for me when I wasn’t feeling well was: absolutely insist that I lay down and not move while a million things needed to be done and he was already exhausted himself. Thank you hubster. :) You rock!
 
 

Invisible Illness Week, Post 1

For those who have been around here a while, you know that I'm overall positive and thankful for my Fibromyalgia. It took a long time for me to get to that point, but I did.

Those new to my site, please check out My Fibro Story.

Overall, the way for me to best keep my pain and fatigue at bay is to exercise regularly and eat more organic, natural, whole foods.

But I have to admit the reality for me right now.

I'm really struggling. I think I might even be a bit depressed.

Not the oh noooo she's depressedddd and needs medicine kind. No, just the I'm in a funk, sorting things out, I'm tired of so many bad things happening, struggling with my faith, this will go away soon kind. 

I have really been analyzing a lot of things in my life lately. Going through a lot of difficult things. But when I look at or hear about other people's lives, I can't help but stop and think shame on me. My life really isn't bad. I know it could be so much worse.

But this is my life. This is my viewpoint. And for right now, from this angle, my life really stinks. I'm so thankful for so many things, but the hard things are really at the forefront right now. I know that means I'm concentrating too much on the negatives, I know.

I think I just have to right now for processing and analyzing some things. That's where I am. This is my reality. It is hard. I know it will pass. I know there are only good things on the other side. I know that sometimes we have to go through the bad stuff to get to the great stuff. I know that I need to be strong. I know that I am weak and only in God's strength can I truly be strong.

It's just a very slow climb out of this valley right now. My fingers and toes keep slipping on the rocks on the side and every time I try harder, I just seem to fall harder.

Every time I cry out for God's help, I feel ignored. Abandoned.

Even though I know that's not true.

Because I feel him pursuing me in little ways all around me.

I know "Every day of rebellion is another plank kicked out of the bridge back to God" but then why do I have to feel this way every day? Why me? Why this? Why now?

God, I am sooo overwhelmed!!!!! Please help me!

My Fibromyalgia reality. My life reality. My faith reality. My sin reality.

I will get to the other side. I can do this. But only by the grace of God. I know He's got my back... I just am not feeling it at the moment.......

National Fibromyalgia Awareness Day

In the past I've been very involved with this day and creating awareness on my blog, and helping with other blogs.

This year, I got the date wrong. The National Fibromyalgia Assocation was promoting an event in CA for May 15th. And somehow I got it stuck in my head that was the date.

Oops.

It's actually today and I'm not prepared with any posts, any collaboration with other people, nor do I have the time or energy right now to go about it. Arghhh.

But then I remembered that Fibromyalgia awareness is a big part of what I try to do somewhat regularly around here.

So instead of smacking myself on the head, I'll just share with you a previous post on 30 Things About My Invisible Illness You May Not Know. I just ask that you link to me from your own blogs to help us spread the word about Fibromyalgia {and let me know in the comments if you did, please}. Thanks!

I also wanted to share with you this great post today about Fibro and her experience. I really appreciated this perspective!

And to my fellow Fibromites: know that you are LOVED! I appreciate you and this community we've built sooo very much. All my best to you as you fight this Fibro bear. I pray that we will all have better days, and that whether we are healed fully here on earth or not, may we always find ways to give God the glory!

Invisble Awareness Week, Post 3: Things I Like...about My Chronic Illness

Okay, as you know by now, this is Invisible Illness Awareness week. I've joined forces with Bloggers Unite and Invisible Illness Week to help spread awareness about Fibromyalgia and the hosts of other chronic invisible illnesses.

So to those of you visiting for the first time from one of those sites or elsewhere, I wanted you to know my usual Tuesday ritual around here. I post a "Things I Like Tuesday" post listing at least 5 things I like. In the midst of the mundane, the negativity that usually surrounds living life chronically ill, and the otherwise dull work-week Tuesdays, I joined with my friend Monica and started posting these each week to focus on positive things.

For this week I decided to put a positive spin on being ill, naming this post "Things I Like...about My Chronic Illness".

Yes, you read that right.

1. I like the additional time this gives with those closest to me. People who aren't fully committed to you are hard to find when you're ill. They run. Fast. Blindly. Scared. And you're left with those who truly care about you. And I love to spend time with those around me who aren't afraid, who dive right in, want to learn more about what I'm dealing with, and care despite the hardships. It shows quickly who your real friends & family are.

2. I like that I've learned a lot more about pain/fatigue and invisible illnesses. Prior to this, the main one I thought about was cancer but that's so well known (generally speaking, maybe not each specific kind) and also MS because I've known people with it. But otherwise I didn't have a clue about pain issues or invisible illnesses! I've learned soooo much from this experience and am so grateful.

3. I like that I've learned more compassion. Granted, I have my moments of "what, you think YOU'RE in pain? what, you really think your fatigue is bad?! haha! try living in my body!!!" But generally-speaking I'm now more attune to the needs/issues of others and what they are going through. I'm not so quick to think automatically that people around me have it so good and if only they knew. I could be walking past someone with an invisible illness, not be aware of it, and think they have it "so good". The grass always seems greener on the other side, until we learn the reality. Now that I'm living that reality, I understand it so much more.

4. I like learning more about seeing the sunshine through the clouds. Learning not to take things for granted. Learning to love others more. Learning to rely on others more. Learning God's sovereignty in the midst of a great storm.

5. I like it because I know God meant it for me. God is using it to mold me and shape me into who He wants me to be. I want to be used for His glory, after all that is what I was created for.


No matter what the future holds, I am trusting God and am thankful for Fibromyalgia's role in my life.

Invisble Awareness Week, Post 2: Lyme Disease

Whenever I start to feel blue or question God's purposes in my dealing with Fibromyalgia, I am gently reminded of some friends going through much worse. And that ultimately helps me remember there are many out there who are worse, also struggling with chronic illnesses, and/or laying on their death beds.

I know it can be a bad thing to compare, but at the same time, I like to keep in mind those I know personally who are dealing with much worse. It helps keep me grounded, not so whiney, keeps me focused more on the Lord & helping others, and helps get my focus away from what I'm going through.

My friends Spencer and Melody (whom I've never meant in person but feel like I know well now through a mutual friend and on blogging & Facebook) are BOTH fighting a vicious bout of Lyme Disease. I can't even begin to describe their pain, agony, helplessness, defeat, or just how very sick they are. Melody has a pretty severe case, while Spencer's isn't quite as bad and at least he's been able to find some work, but it's still pretty bad. They had to move to be closer to family since they just couldn't do it on their own anymore. They are both very ill. Both. Every time I struggle or think woe is me, God sends them into my brain. I pray for them. Weep for them. Cannot possibly imagine the immense heartache there. Cannot possibly imagine my husband also dealing with a chronic illness. Asking God to give them strength when they are too weak to even think for themselves.

I've learned a lot from Melody and her fight with Lyme, starting with originally being diagnosed with Fibromyalgia. She's helped me out a lot with resources and ideas for getting me tested for Lyme's, even while she was so sick she could barely breathe, much less type me an email. Please read their story here.

I write this email not for you to feel sorry for us in any way, but to help spread the word about Lyme's, Fibromyalgia, and other chronic illnesses.


For more information on Lyme's, visit the International Lyme and Associated Diseases Society.

30 Things About My Invisible Illness You May Not Know

30 Things About My Invisible Illness You May Not Know:
 
1. The illness I live with is: Fibromyalgia

2. I was diagnosed with it in the year: Jan 2008

3. But I had symptoms since: Aug 2006

4. The biggest adjustment I’ve had to make is: Doing less, learning flexibility, not lifting/moving things, and having to cancel on friends/family in ways I never thought I'd have to.

5. Most people assume: I'm exaggerating, am just a wimp, and/or can't possibly be in that much misery. The thing is, I'm often way worse than I even let on. More often than not, I hide it completely outside the home.

6. The hardest part about mornings are: Waking up and pushing my way out of bed through the stiffness.

7. My favorite medical TV show is: None. Out of regular, current TV shows, Smallville, Heroes, Chuck, and NCIS are my favs.

8. A gadget I couldn’t live without is: My heating pad and new wrap-around-the-neck-microwaveable-made-of-rice-thingy. Furniture I couldn't live without is my recliner. *Edited to add: The headset for my home phone. I can't talk on the phone anymore at length unless I have the headset on.*

9. The hardest part about nights are: Lying awake, staring at the wall, pleading for an ounce of sleep.

10. Each day I take 6-20 pills & vitamins. (No comments, please) - The vitamins depend on what treatment I'm on at the time.

11. Regarding alternative treatments I: look forward with hopeful anticipation. I know that alternative treatments can work with the right specialists, regimes, hard work, and determination. Too bad the only good chiropractor/acupuncturist I have found is 30-40 minutes out of my way (one way). With an already bad commute, that makes it virtually unbearable and very, very stressful and exhausting. So what can do me some good, ultimately does a lot of harm too. Right now though, I am concentrating on some other things and hope to get back to alternative treatments maybe sometime next year.

12. If I had to choose between an invisible illness or visible I would choose: visible, I'm guessing. When I have something visible like the flu, I get more attention/help. People don't know/understand what they can't see and therefore often forget you have it, thereby treating you normally and not doing things for you. For your mental health, sometimes that makes you feel good, but physically it's the pits.

13. Regarding working and career: I'm sooo thankful to work for such a great place and great boss where I have some flexibility. And I'm so thankful for the ability to work! I know not every Fibro person is able to. I do what I can to be the best I can be for work, and sometimes that means not being able to be who I need to at home. Or I can push myself too hard at home, and be unable to get to work. It's so frustrating...but again, I am thankful I can even do that.

14. People would be surprised to know: I have a lot of fear, anxiety, and insecurities. I try to smile even when I feel like I could die.

15. The hardest thing to accept about my new reality has been: Disappointing people. No longer feeling like myself. Feeling stuck in a stranger's body. Feeling more depressed and anxious than ever before because I'm so miserable physically. Feeling lonely even when I'm not alone. Feeling afraid I'm going to die from the pain & severe fatigue. Struggling with why people can't accept invisible illnesses and love in spite of it. Not being able to get those closest to me to understand. Being told by others what to do to help my own illness, all the while I'm probably way more up-to-date on it than they are, and they can't understand that with such a limiting illness, you can't go after treatments with all you've got. It could mean not walking for a week. I just want to be loved, encouraged, and supported in spite of the illness.

16. Something I never thought I could do with my illness that I did was: Weight lifting. I was told by someone a while back that Fibro people aren't supposed to lift weights. My trainer said otherwise. And despite the pain, he was right. I can do it. It'll actually really help me to keep doing it. But pushing through the pain is incredibly difficult. Without a trainer, I don't think I'd be able to continue.

17. The commercials about my illness: get muted in our house very quickly...they are very irritating! I know all other Fibromites I've talked to about this also feel the same way. Those commercials do not shed the best or most accurate light on Fibro. And the people making the commercials clearly do not have Fibro.

18. Something I really miss doing since I was diagnosed is: kickboxing. I sometimes watch the other ladies at my gym who are doing it and I admittedly get a bit jealous. I miss it. a lot.

19. It was really hard to have to give up: living. having fun. It's hard to do either in so much pain. cleaning. cooking. grocery shopping. Even if i didn't give them up fully, I did in part, and they lost any sense of fun or enjoyment because doing them usually brings onslaughts of horrific pain.

20. A new hobby I have taken up since my diagnosis is: blogging, researching other chronic illnesses, and helping increase awareness. 

21. If I could have one day of feeling normal again I would: celebrate, kickbox, take a long walk or bike ride or both, clean my house upside-down, go shopping, play pitch & catch or frisbee with hubster, and/or go into Chicago and wander all over downtown.

22. My illness has taught me: to be more compassionate and understanding when others are going through pain or illness. Sometimes people-watching at church or just out and about I'll glance around, wonder who all walking or driving by me is also fighting an invisible illness or cancer, and I'll say a prayer for them. You never know.

23. Want to know a secret? One thing people say that gets under my skin is: "Why don't you just take some Ibuprofen?" - If it was that simple believe me, I'd be doing it! But being on Ibuprofen at incredibly high doses for the rest of my life isn't realistic. Also when they ask "Are you getting better?" or "Do you still have that Fibro problem?" - The answer is DUH! ::smack yourself on head:: - I love what JessiBee says on Fibro Blog: "Please, please don't ask me if I'm getting better. Once I figure out how to manage my pain and other symptoms, the entire world will be the second to know. Until then, everything changes from day to day, minute to minute, even second to second. It's all about learning how to manage the pain and other symptoms when outside stressors, the weather, and sometimes nothing at all can change where it hurts, how it hurts, and how much it hurts."

24. But I love it when people: Offer to help and just go right at it, without making me try to come up with an answer to "can I help you with anything?" Well, yes you can, but I don't want to respond with a yes and make you feel like you have to, and I wouldn't even know for sure what it would be even if I do need some help. Just do it for me.

25. My favorite motto, scripture, quote that gets me through tough times is: Isaiah 41:10 and "Make time for the quiet moments as God whispers and the world is loud." ~Unknown

26. When someone is diagnosed I’d like to tell them: research a lot and be your own advocate. Know the most as possible about your own illness. Stay strong.

27. Something that has surprised me about living with an illness is: how misunderstood invisible/chronic illnesses can be.

28. The nicest thing someone did for me when I wasn’t feeling well was: When a dear coworker of mine (who was relatively new and I didn't know really well) was with me at a conference, where I had to carry a heavy backpack around because of the distance from our room (I have too many things I need close by and accessible like meds, water, etc), she just took it from me. Anytime we were walking around together, it was on her. Thanks Amy, you are a darling. I will never forget that gesture, it meant the world to me. And the sweet, nonjudgmental way you did it was so great. Also back in July when Tim's sister and her family stayed here, and she helped with so much stuff around the house and also put her kids to work...we caught up on gardening, cleaning the attic, she helped with all the cooking, and so on. It was so incredibly sweet of her.

29. I’m involved with Invisible Illness Week because: I have an invisible illness and want to help draw awareness to it and other invisible illnesses.

30. The fact that you read this list makes me feel: happy. Thank you for reading!

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