Invisible Illness awareness week Meme - 30 Things About My Invisible Illness You May Not Know

The following is a meme I've filled out for Invisible Illness awareness week. Which is Sept. 14th - 20th. To find out more about this meme, or to fill it out for yourself click here.

30 Things About My Invisible Illness You May Not Know

1. The illness(es) I live with is: Rheumatoid arthritis, Fibromyalgia, & Poly Cystic Ovarian syndrome.

2. I was diagnosed with it in the year: PCOS - 1999, RA - 2005, FM - 2009

3. But I had symptoms since: 1994?

4. The biggest adjustment I’ve had to make is: How I pace myself, and what actually does get my attention and energy.

5. Most people assume: That I'm lazy, an over eater, and unorganized. None of these are true.

6. The hardest part about mornings are: Moving. I'm so stiff and sore and tired in the mornings. I rarely make plans until afternoon, and I miss many church services due to morning troubles.

7. My favorite medical TV show is: Scrubs. I'm not really into the drama based ones. Too much gore. But Scrubs is funny, and actually still teaches the viewer a thing or two about health too.

8. A gadget I couldn’t live without is: Bathroom handrails. And I'm angered by how many public places don't adequately clean the handrails in their handicapped stalls.

9. The hardest part about nights are: pain induced insomnia.

10. Each day I take 4-20 pills & vitamins. Depends on the level of pain and vitamin deficiency. (No comments, please) I also have a couple creams I use as needed, and an injection I take every other week.

11. Regarding alternative treatments I: Know a very small handful that are actually helpful. Like ginger & MSM cream for arthritis, and cinnamon for insulin resistance (as part of PCOS). But the vast majority of it all is snake oil and of no help.

12. If I had to choose between an invisible illness or visible I would choose: Well, this is a tough one. PCOS is partly visible as it's caused me to gain a considerable amount of weight in my lifetime. And people are wicked and judgmental when they see an overweight person. On the other hand, I often think, if people could see the pain I'm in maybe I'd be believed more. So I really don't think I have an answer for this one. I think both are hard struggles to live with.

13. Regarding working and career: I don't think I'll be re-entering the work force. I'm struggling enough to keep home and need more support.

14. People would be surprised to know: That on my best of days I still feel the need to limit myself, because when I don't, I pay for it the next day.

15. The hardest thing to accept about my new reality has been: The cost of medications and the lack of income. I struggle with the idea of contesting a case to apply for SSI. I didn't work long enough before becoming ill to qualify for disability benefits. So all this is a very real strain on our income.

16. Something I never thought I could do with my illness that I did was: Participate in the Arthritis Foundation fundraiser walk! I didn't do the 3 mile plan I had hoped. But I still raised around $200 AND made it around the 1 mile course!

17. The commercials about my illness: Are really out of touch. The medications for RA help, but I've yet to be on one that fully gives me my life back as they seem to display. PCOS doesn't really have any commercials for meds anymore. For a while there was Vaniqua... I tried that - it did nothing for my facial hair growth & caused my skin to break out horribly.

18. Something I really miss doing since I was diagnosed is: LONG hikes. I still love to go on nature walks, but can't do anywhere near what I once could.

19. It was really hard to have to give up: The idea of carrying a child. It still breaks my heart. But my PCOS symptoms make this a very small possibility, even with the best of treatments. Plus. My husband and I agree, when it comes to growing our family, funds will be better spent for adoption than for infertility treatments that will most likely fail.

20. A new hobby I have taken up since my diagnosis is: Social networking. I'm here on FB and Blogger to meet and connect with others who have the same issues as me. It's been hard to find friends who have these same problems. So connecting on line has become a major support for me. I also really want to get into digital scrapbooking since working with my hands is hard. I've given up on a lot of physical crafts, but still enjoy being artistic.

21. If I could have one day of feeling normal again I would: Shop the mall, walk on the beach and hike the full trail to Wallace falls.

22. My illness has taught me: To ask others for help (still teaching me that and kicking my butt doing it.) To rely on God for EVERYTHING! And to draw closer to Him!

23. Want to know a secret? One thing people say that gets under my skin is: "Try this!" or
"Have you tried this?" To be honest, I'm working every day to find ways to better my quality of life. Often things others have suggested have already been tried, and with failed results. It just brings up the whole frustration of hoping and failing all over again.

24. But I love it when people: Help me with my physical needs. A kind young man holding open the grocery store door means the world to me!

25. My favorite motto, scripture, quote that gets me through tough times is: 2 Cor. 4:7-18

But we have this treasure in jars of clay, to show that the surpassing power belongs to God and not to us. We are afflicted in every way, but not crushed; perplexed, but not driven to despair; persecuted, but not forsaken; struck down, but not destroyed; always carrying in the body the death of Jesus, so that the life of Jesus may also be manifested in our bodies. For we who live are always being given over to death for Jesus’ sake, so that the life of Jesus also may be manifested in our mortal flesh. So death is at work in us, but life in you.

Since we have the same spirit of faith according to what has been written, "I believed, and so I spoke," we also believe, and so we also speak, knowing that he who raised the Lord Jesus will raise us also with Jesus and bring us with you into his presence. For it is all for your sake, so that as grace extends to more and more people it may increase thanksgiving, to the glory of God.

So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.

26. When someone is diagnosed I’d like to tell them: Get connected. Don't let yourself feel like you are alone in this. Find others on-line or in your community through support groups, who have what you are dealing with. You'll learn loads for how to cope, what to expect, and you'll have support of others who know what you are going through when those around you don't.

27. Something that has surprised me about living with an illness is: How bad and apathetic some doctors can be. When you need to make appointments all the time, you start to really scrutinize the quality of your care.

28. The nicest thing someone did for me when I wasn’t feeling well was: Make meals & bring them to me, or buy food and bring it over. On my worst of days I miss meals because it's too hard to cook.

29. I’m involved with Invisible Illness Week because: Rest ministries has become a valuable ministry to me. I've been able to connect with so many others and share prayer requests and stories with others. There is HOPE; both in faith in Christ, and with fellowship with others. Even if that fellowship is over the computer.

30. The fact that you read this list makes me feel: Valued. You took the time to read what this all means to me and my life. Thank you! Thank you for caring for me as a human, and the needs, both physically and emotionally that I have as a result of the illnesses I have.

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

When others don't understand invisible illness.

One of the most frustrating things about having an invisible illness is when others look at you and think you should be completely capable because you look fine. Some days, living with RA, that can be completely true and I can do a lot. But most days I'm happy to eat three meals, spend some time on the computer and go back to bed. What can I say, it's not an easy thing being ill, and the lack of understanding sometimes really makes life trying.

Recently I've started using the power carts when I go to the grocery store. It's been a good thing, but I still feel eyes on me as people see me walk in and then sit down on these cars. Having my cane at my side still doesn't seem to deter the stares. I remember when I was really little I was watching someone using their wheelchair with a basket attachment in the store and my mom saw me watching and told me not to stare because I could hurt their feelings. I was fascinated with the functionality of the basket on their chair and didn't get the idea of hurting their feelings then, but I so get it now that I deal with it myself.

One of my matrons of honor (I had two) at my wedding has arthritis as well. She was one of the youth leaders when I was a youth in the church we used to attend. As a group we'd go to concerts and amusement parks and I always loved hanging out with her, but would prod her to come along with me to various places in the park, to just walk with me. Sometimes she was a sport and other times she'd wrap on her knees and tell me something along the lines of "Arthritis, need rest" at least that's all I'd remember. And now that I deal with it myself I feel the need to apologize to her for pushing her as much as I did. Yes, it's good to keep moving, but I'm sure I've made her feel bad about not being able to keep up with a kid (when I was a teen). If I had the understanding I have now, I would have just sat along side her and enjoyed the wonderful conversations we always have when we're together. Dear Liz, I miss you & I'm sorry I didn't just sit with you more.

On to another aspect of this topic. There needs to be real understanding awareness raised around society today. I think one of the biggest ignorance is when people assume that someone is lazy when they use a walker, cane, wheelchair, etc. They think that as long as all limbs are there and useable that any aid is just laziness. It's sad, if only they could see what life feels like with needing these things, maybe they'd think twice before making such a false and hurtful assumption. This issue happened to a teen who recently went to a drive up restaurant and was turned away because she used the handicapped spot. She rightfully has a placard and special drivers license, and yet they turned her away. You can read about it here. It's just a classic example of someone thinking "she looks young and fit, so they must be lazy and lying." And yet this young woman had every right to be there. I don't think it's an issue to boycott over, which is why I'm leaving the link to mention where this happened. I think the issue is with the employees who are ignorant. I do however think they have a case to make to corporate that those employees need to have some training or disciplinary action done. It's just sad that in a day and age where we're supposed to be so aware and accepting of so many things that when someone can prove their disability they are still denied the proper service they deserve.

Invisible Illness Week Facts to Tweet About

This link takes you to a list of affirmations and stats about chronic pain and chronic illness. I've tweeted a few of them (posted them on my twitter account) but haven't done all of them, so I thought I'd post them here real quick.

RT @invisibleillwk #iiwk09 Fact #1 Nearly 1 in 2 Americans (133 million) has a chronic condition. Not U? It’s someone U luv! http://ow.ly/6Otw

RT @invisibleillwk #iiwk09 Fact #2 About 96% of illnesses are invisible. No visible signs and no assistive device used. http://ow.ly/6Otw

RT @invisibleillwk #iiwk09 Fact #3 The significance of one’s faith has shown to help one handle a stressful medical event better http://ow.ly/6Otw

RT @invisibleillwk #iiwk09 Fact #4 Sadly, the divorce rate among the chronically ill is over 75 percent http://ow.ly/6Otw

RT @invisibleillwk #iiwk09 Fact #5 Plp with illness are young! 60% are between the ages of 18 and 64 http://ow.ly/6Otw

RT @invisibleillwk #iiwk09 Fact #6 By 2020, about 157 million Americans will be afflicted by chronic illnesses. http://ow.ly/6Otw

RT @invisibleillwk #iiwk09 Fact #7 90% of seniors have at least one chronic disease and 77% have two or more chronic diseases. http://ow.ly/6Otw

RT @invisibleillwk #iiwk09 Fact #8 Depression is 15-20% higher for the chronically ill than for the average person. http://ow.ly/6Otw

RT @invisibleillwk #iiwk09 Fact #9 Sadly, physical illness or uncontrollable physical pain are major factors in up to 70% of suicides. http://ow.ly/6Otw

RT @invisibleillwk #iiwk09 Fact #10 About one in four adults suffer from a diagnosable mental disorder in a given year. http://ow.ly/6Otw

RT @invisibleillwk #iiwk09 Fact #11 Invisible illness includes #autism, #bulimia, #migraine pain, #arthritis, #bi-polar disorder #depression. http://ow.ly/6Otw

RT @invisibleillwk #iiwk09 Fact #12 More plp need pain treatment than those w/ cancer, heart disease, stroke & diabetes combined. http://ow.ly/6Otw

RT @invisibleillwk #iiwk09 Fact #13 Less than 2 hours is spent on pain management in most medical school curriculum http://ow.ly/6Otw

RT @invisibleillwk #iiwk09 Fact #14 Most people prefer illness mgmt advice from health professionals before their spouse http://ow.ly/72fO

RT @invisibleillwk #iiwk09 Fact #15 19 million of plp who are severely disabled do not use a wheelchair, cane, crutches or walker http://ow.ly/6Otw

RT @invisibleillwk #iiwk09 Fact #16 4 in 5 health care dollars 78% are spent on people with chronic conditions in USA http://ow.ly/72g4

RT @invisibleillwk #iiwk09 Fact #17 Patients with a deep faith recover faster from depression,even when illness doesn’t improve. http://ow.ly/6Otw

RT @invisibleillwk #iiwk09 Fact #18 Faith reduces stress, loneliness, pain, & anxiety according to American Cancer Society http://ow.ly/6Otw

RT @invisibleillwk #iiwk09 Fact #19 Over half of the chronically ill say the worst thing someone can say is “you look great.” http://ow.ly/6Otw

RT @invisibleillwk #iiwk09 Fact #20 34% of respondents said the person closest to them with a chronic illness is a parent. http://ow.ly/6Otw

RT @invisibleillwk #iiwk09 Fact #21 Most medical residents leave med school believing that 80% patients R addicts seeking drugs. http://ow.ly/72gP

RT @invisibleillwk #iiwk09 Fact #22 Over 75 percent of patients with depression complain of physical pains. http://ow.ly/6Otw

RT @invisibleillwk #iiwk09 Fact #23 The # of plp in the US 65 > will double in the 25 yrs to 20% of Americans = more illness. http://ow.ly/6Otw

RT @invisibleillwk #iiwk09 Fact #24 Depression can predispose patients to chronic pain due to chemical imbalance it creates. http://ow.ly/6Otw

RT @invisibleillwk #iiwk09 Fact #25 Faith gives plp w/ health challenges peace of mind & will to live http://ow.ly/6Otw