Monday, August 31, 2009

30 Things About My Invisible Illness You May Not Know

Lisa Copen has started a list called, "30 Things About My Invisible Illness You May Not Know." She and her bloggy friends are filling it out and posting it on their blogs and facebook as a way to raise awareness of invisible illnesses and to spread the word about Invisible Illness Week coming up soon.

For those of you with an invisible illness, you too are invited to fill this out and post it on your blog or facebook. Then go back here and leave a comment with a link to your post. Two of the commenters will receive a prize. Gotta love those blog giveaways! :)


30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Dysautonomia, a dysfunction of the autonomic nervous system. Specifically I have been diagnosed with POTS and NCS, both of which are types of dysautonomia. I also have Gastroparesis, Joint Hypermobility Syndrome (formerly called Ehlers-Danlos Type III), Chronic Fatigue Syndrome, a few different sleep disorders, and possibly a Mitochondrial Disease.

2. I was diagnosed with it in the year: Diagnoses came starting in 1992. The most recent diagnosis came in 2007.

3. But I had symptoms since: around 1990.

4. The biggest adjustment I’ve had to make is: It’s impossible to just pick one big adjustment. There have been so many adjustments over the years. Most of them are hard at the time.
- realizing that dreams and plans I had for the future aren't going to happen, or will happen very differently than I had thought!
- getting used to my illness being "seen" when I go out in a wheelchair.
- learning to just lie down when I need to whether I'm in church, Wal-Mart, at a wedding, a restaurant, or wherever.
- giving up the independence of driving and shopping on my own
- learning to let Will help me with basic things like getting food, getting dressed, and showering.
- admitting that I need help from others.
- actually accepting help.

5. Most people assume: that when I’m smiling and sitting in my wheelchair or walking a short distance that I’m doing well physically. In reality, it is hard for me to sit in my wheelchair. It makes me very tired. Walking is tiring, too. It is never easy.

6. The hardest part about mornings are: moving, getting up, getting dressed, and getting my brain functioning and thinking clearly. My body is so slow in the morning. It just doesn’t want to work!

7. My favorite medical TV show is: I don’t watch any medical tv shows. I live the reality of it. When I watch tv it is nice to escape that world for a while!

8. A gadget I couldn’t live without is: Well, technically I could live without any of them, but I especially appreciate my shower stool, my wheelchair, and my walker. They make showering and getting out of the house possible. I also especially appreciate the computer and internet. It is my connection to the outside world and my many friends with dysautonomia.

9. The hardest part about nights are: not being able to fall asleep, waking up often in the night (due to sleep disorders, pain, and temperature regulation issues), never getting enough sleep.

10. Each day I take at least 7 different pills & vitamins.

11. Regarding alternative treatments I: have tried many. Some because I wanted to, others because I felt pressured to. In general, alternative treatments don’t work for someone like me who has dysautonomia. You cannot fix a broken autonomic nervous system. Peppermint tea can ease nausea. A healthy diet is beneficial in a small way. But nothing actually fixes the root problem. Most alternative treatments do nothing, or make things worse. Only God can fix a broken autonomic nervous system.

12. If I had to choose between an invisible illness or visible I would choose: I’d just leave this one up to God. Both are hard, just in different ways.

13. Regarding working and career: I don’t mind that I’m missing out on a career. I love being a stay-at-home mom. I just wish I had the strength and energy to do all the “mom stuff” I’d like to do.

14. People would be surprised to know: how lonely it is living with a chronic illness.

15. The hardest thing to accept about my new reality has been: being left out of activities because I either physically can’t do them or because people don’t think to invite me.

16. Something I never thought I could do with my illness that I did was: have a child.

17. The commercials about my illness: don’t exist. There are hundreds of thousands of people with dysautonomia, but we are all but completely ignored by the media.

18. Something I really miss doing since I was diagnosed is: walking by Will’s side and holding his hand.

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

20. A new hobby I have taken up since my diagnosis is: crocheting and knitting.

21. If I could have one day of feeling normal again I would: go hiking and camping in Alaska with my family.

22. My illness has taught me: how very, very blessed I am.

23. Want to know a secret? One thing people say that really bothers me is: When someone who is healthy complains about being tired or complains about sickness that lasts only a couple of weeks.

24. But I love it when people: say that my life encourages and inspires them.

25. My favorite motto, scripture, quote that gets me through tough times is: "For we know that our light and momentary troubles are achieving for us an eternal glory that far outweighs them all" (2 Corinthians 4:17, NIV).

26. When someone is diagnosed I’d like to tell them: that life with a chronic illness is hard, but that it can still be fun. There is real hope, and there is real joy in the midst of trials. That hope and joy is found only in the Lord Jesus Christ.

27. Something that has surprised me about living with an illness is: how very hard it is even when it looks easy from an outsider’s perspective.

28. The nicest thing someone did for me when I wasn’t feeling well was: offered help on a regular basis, but even more special - offered genuine friendship as well.

29. I’m involved with Invisible Illness Week because: there is so much that people don’t know about invisible illnesses.

30. The fact that you read this list makes me feel: like you care.

Sunday, August 30, 2009

Holy, Holy Lord God Almighty


Be Unto Your Name

We are a moment; You are forever.
Lord of the ages, God before time.
We are a vapor; You are eternal.
Love everlasting, reigning on high.

Chorus:
Holy, holy Lord God Almighty.
Worthy is the Lamb Who was slain.
Highest praises honor and glory,
Be unto Your name,
Be unto Your name.

We are the broken; You are the healer.
Jesus Redeemer, mighty to save.
You are the love song we'll sing forever,
Bowing before You blessing Your name.

Holy, holy Lord God Almighty.
Worthy is the Lamb who was slain.
Highest praises honor and glory,
Be unto Your name,
Be unto Your name.

Holy, holy Lord God Almighty.
Worthy is the Lamb who was slain.
Highest praises honor and glory,
Be unto Your name,
Be unto Your name.

----
Lyrics by
Lynn DeShazo and Gary Sadler
1998
----

Thursday, August 27, 2009

Interview with Lisa Copen



I am pleased to welcome Lisa Copen to my blog today! She is the founder of National Invisible Chronic Illness Awareness Week. This year the awareness week is September 14-20. Lisa is on a blog tour to share about the event and how it can specifically encourage you.

~~~~~~~~

Rachel: Hi, Lisa. Thank you for stopping by One Day at a Time to chat with us!

Lisa: Thank you for the honor of being here. I read a lot of blogs, but recently I've visited more than ever before and I'm amazed at how the quality and quantity of blogs on health and illness matters have grown over the last couple of years. Both the readers and writers of blogs have changed how people perceive different illnesses, because they reveal not just the symptoms of illness, but the daily lives of the people who live with them.

Rachel: Yes. Blogs have indeed helped to spread awareness of chronic illnesses, and speaking of awareness, tell us about National Invisible Chronic Illness Awareness Week. That's quite a mouthful!

Lisa: Yes. Often I refer to it as just Invisible Illness Week or NICIAW. Our mission is to have a designated time, worldwide, in which people who live with chronic illness, those who love them, and organizations are encouraged to educate the general public, churches, health care professionals and government officials about the affects of living with a disease that is not visually apparent. Through programs and resources, we seek to recognize the daily challenges of more than 100 million adults and children who live with invisible illness.

Its also a great chance for people with any illness to be involved in a national event to increase the understanding of their own particular disease. They can use our event to blog about the emotions of living with their illness, for example, how they often may look perfectly fine but are in deep pain.

Rachel: I have heard about the virtual conferences that happen during Invisible Illness Week. Will you explain what a virtual conference is to my readers?

Lisa: The virtual conference is a unique opportunity to "attend a conference" without having to get out of your pajamas! The main event of National Invisible Chronic Illness Qwareness Week is this 5-day virtual conference--which is all completely free--September 14-18. We have 20 speakers who are experts in chronic illness and their specific area and each will be giving a 40-minute seminar and then taking calls from our listeners live. The seminars are M-F, 4 times a day, and will feature a variety of topics such as going to college, the challenges of marriage, applying for disability financial assistance, cleaning and organizing, finding the right job, faith, preparing for surgery, parenting, and many more. You can listen to them all free live, or later on your computer, even download them from itunes. Or they can be purchased on a CD.

Rachel: That sounds great. I know a lot of us would love to attend a 5-day conference on how to better cope with chronic illness, but because of our illness, traveling, finances, sitting for so long, and other factors, it just isn't possible, so this is perfect.

Lisa: Isn't it? There's a certain amount of irony that we began doing the virtual conferences years ago, but now a lot of companies and organizations are choosing this option instead of an actual conference because of the economy.

Rachel: Tell us why you started Invisible Illness Week. What made you see this as necessary?

Lisa: For a few reasons. I began Rest Ministries in 1997, a Christian organization for people who live with any kind of chronic illness or pain, because I saw the need to connect with others who are going through a similar journey in their life. We are also the sponsors of Invisible Illness Week. I witnessed a lot of people who were very bitter and frustrated because they felt so alone and invalidated in their pain. Some people even had spouses who questioned whether the illness existed at all.

But I also heard from family members, caregivers, doctors, churches, etc. who really did want to know how to communicate better with those who had a chronic illness. They tried to say the right things, but it was usually the wrong thing, and so they ended up just withdrawing from the relationships.

When illness and pain is invisible it can make it extremely hard for healthy people to grasp the significance of how much it changes one's life. It's easy for one with illness to become bitter when the people they love the most may not even believe the illness exists or that it's being embellished. It's all very sad, and I felt more communication was necessary.

Even those of us who would say we cope pretty well with a chronic illness still have moments when our frustrations can get the best of us. It can be as simple as legally parking our car in a handicapped parking spot and someone walking by gives us "the look" of skepticism. Or maybe one of our dearest friends innocently asks, "So, you must be feeling all better now, right?" There is a big difference between being sick and having a chronic illness and most people don't grasp that difference.

Rachel: This is what motivated you to begin an invisible illness week? To increase the communication about all of these issues and emotions involved in living with an illness or pain that no one can see?

Lisa: Yes, I saw such amazing people who survive against all odds and still had hope and faith. I wanted to give them an opportunity to encourage others who were going through depression or hopelessness.

It really doesn't matter what illness we have, where we live, what age we are, how long ago we were diagnosed, etc. The fact that most of our illnesses are invisible and not seen by people gives us a lot more in common that most of the physical symptoms of our specific illnesses ever could.

Rachel: What illness do you have, Lisa?

Lisa: Rheumatoid arthritis is my main disease I struggle with. I was diagnosed in 1993 at the age of 24. A few years after my diagnoses I started having symptoms of fibromyalgia and was later diagnosed with that. Unfortunately, I've never experienced any kind of remission that all the doctors hoped for, so the last sixteen years have been a real challenge. I know I could be worse off now and that in some ways I've been very blessed, but I'm also going through the emotions of my illness becoming more visible. My illness isn't just painful every day now, but it's hard to do dishes or drive because my hands and feet are becoming more and more deformed. I take a lot of medications that have slowed the disease progression down, but I've been in a new season this last year and have many surgeries in the near future.

Rachel: I heard that you type with just a few fingers.

Lisa: Yes. I use about 3 fingers and my 2 thumbs. I have a voice program but I usually want to talk too fast and it can't keep up.

Rachel: How can people get involved with Invisible Illness Week and find out more information?

Lisa: I'm so glad you asked because just by getting involved in helping us spread the word, like by reading and sharing about this blog, is one way to be part of our grassroots effort. I hope its rewarding for people to know that they are making a difference just by introducing others to the virtual conference. Everything can be found at our web site National Invisible Chronic Illness Awareness Week , including some fun items like buttons, bumper stickers, tote bags, pins, and silicone bracelets that say, "Invisible Illness, Visible Hope." This year's theme is "A Little Help Gives a Lot of Hope."

We are also accepting blogs from people to be featured on our site as a guest blogger. And we have a place to sign up to commit to blog on the topic of invisible illness on one's own blog. You can join our cause on Facebook and share it with others, tell people about our video, our twitter facts about illness, things like that. Tell your doctor, counselor, pastor, colleagues; we have brochures available too.

Some people call their local newspaper and share about the week, their support group, or their illness experience. Since it's listed in Chase's Annual Events journalists can tie in the personal story with the annual event.

Rachel: We both know that there are thousands of people with illness who feel desperately alone and think no one possibly understands what they are going through. What would you tell these people?

Lisa: Truthfully, if I could I would just sit beside them and give them a gentle hug. I struggle with the ability to sit and not say anything, as I typically want to start problem-solving immediately. But I know most people feel that no one is ever willing to truly listen to what they are going through and all of the emotions involved with it. They don't have anyone to talk to or be vulnerable with.

Secondly, I would want to validate that the feelings that they are experiencing that no one understands--well, it's true. Unfortunately, their experience is unique and no one can truly know what it's like to be in their shoes. Illness can be an extremely lonely event. That said, though the illness may be a lifetime event, the isolation doesn't need to be. There are a lot of ways to build relationships with people who do understand more than they may expect, they just have yet to be discovered. If you are unable to drive to a support group, there are many online groups where you will find comfort. The social network I began is at Rest Ministries Sunroom and I recently started Illness Twitters in order to connect people who twitter about illness or health issues.

And lastly, since my faith is in the Lord, I would want them to know that regardless of what negative experiences they've had with churches or Christians, they may want to give God a try. He can give comfort that we just cannot get from any person. And they can still have God's "Plan A" for their life. The illness hasn't messed it up and bumped it down to "Plan B." I know that sounds cliche, but I hear stories of this every day and have found it myself to be true.

Rachel: What is something God has taught you that you would not have learned if it weren't for living with a chronic illness?

Lisa: The value of life and the ability to feel so carefree. I know that sounds cliché’ and my friends would even say they aren’t feeling carefree – they have lots of worries! But I see people my age who don’t understand how blessed they are to not have to worry about what their lab tests are going to say, how they will pay for medical expenses, who will take care of their children as they recover from their fourth surgery. They can make travel plans and know the odds of them going are pretty high. In the ministry, I see so many people with illness who also get cancer or lose a spouse from cancer. They are so blessed. My grandmother is 94 and has been in perfectly fine health most of her life. She is annoyed right now that her knee is a little stiff in the mornings but she could “out-walk” me in distance and speed any day. God has truly given me the ability to know how precious times are; to take time to enjoy the moments with my family. To know life has no guarantees and that we have to make the most of every moment—try to live without regrets.

Rachel: What advice do you have for other mothers who have a chronic invisible illness?

Lisa: Take an hour at a time! Seriously, I am learning this every day. My son is 6 and in some ways it’s easier now because it’s less of a physical task to get him up and ready every day for school. My husband helps a lot. It’s a lot different than when I was changing diapers and using the stroller for every outing. It can be exhausting, but just remember that every new mom feels exhausted. Yes, I know those of us with illness are more tired, but this is just what we’ve been dealt, and so we may as well enjoy the joy of being a mom.

Learn to accept help. Even if you are 23, ask the grocery clerks to put the groceries into your car for you while you put the baby in. Ask your friends to pick up milk at the grocery store for you. Buy bottles and diapers and pajamas (for both you and the baby) in bulk so the world won’t stop if dishes or laundry doesn’t get done.

And force yourself to get out of the house, especially if you are the mom of just one child. Look in your local city’s kids papers or magazines for outing ideas. There are coffee houses that have Thomas the Train sets; there are play areas that are enclosed; there is even hourly child care that can be a great relief on days that you are really sore.

I am working on a Christian moms with illness book now, so would love to hear all of your reader’s ideas!

Rachel: I'll ask them to share some ideas in the comment section, and I'll pass them on to you. Thanks again for joining us today, Lisa, and thank you for organizing Invisible Illness Week. I know with your own health issues and with also being a wife mom that it can't be easy.

Lisa: You are right, it isn't, but its more than worth it! The people I meet or email each day keep me going and I have a husband that is incredibly supportive. Thank you for hosting me here at your blog today. I hope your readers will head on over to National Invisible Chronic Illness Awareness Week and let their friends know about the free 5-day virtual conference. Its going to be a great time!



~~~~~~~

Do you have a chronic illness? An invisible illness? Please share about it with us in the comments section. I'd like to hear about the challenges you face each day. Let's encourage and inspire each other and help to spread awareness.

If you are a mom with an invisible illness, please share some advice you'd like to give to other moms with a chronic illness. I'll send Lisa an email and pass on your ideas. Maybe some will even show up in her book! :)

Thank you for reading and for letting Lisa and me share about Invisible Illness Week!

Friday, August 21, 2009

Outdoor Flower Pot Gardening

My indoor gardening this spring was pretty much a total flop. Seeds sprouted, but didn't have enough sunlight to grow. The other problem....


look closely...
...mold and mildew.

I couldn't even grow a cactus indoors without mold growing on top of the dirt. We run a dehumidifier 12 hours a day, but our apartment still grows mold. That was the end of indoor gardening. My gardening neighbors said they had the same problem with trying to grow plants inside.
I decided to get some outdoor plants once it was warm enough, but we don't get direct sunlight in front of our apartment until the end of June. My friend, Zona, gave me some advice about plants that do well in the shade. She suggested impatiens and begonias. I bought some of those, plus some other flowers that had tags saying they would grow in the shade. We also tried out some vegetables and herbs in the small area that gets some sun in the summer.
Here are recent pictures from our outdoor flower pot garden:


outside our apartment
These are Nasturtiums. Dorina sent some of these seed packets to me. She said you can't kill Nasturtiums. Yay! Just what I needed!



To the left of our front door we have Nasturtiums, New Guinea Impatiens, Begonias, Dusty Miller, and Impatiens.



To the right of our door we have a big pot of Impatiens.



The New Guinea Impatiens are my favorite.



Here are herbs, lavender, tomatoes, zucchini, lettuce, and gourds.



Tomatoes that started out in a topsy-turvy planter and had to be rescued and planted properly.



I have a very nice gourd growing.



We have lots of blooms on our zucchini, but the slugs keep attacking before they actually produce fruit.



My poor zucchini plant



But look! We did get one zucchini!!! I think this will be our only zucchini. It is still August, but the sun is pretty much gone from the front of our apartments. Very little sunshine left for the plant.

Thursday, August 6, 2009

POTS Documentary

The Dysautonomia Information Network is currently working on a POTS documentary. This has been in the making for a while now, and I am excited to announce that they have the trailer ready for preview!

For those of you who may not know, POTS (Postural Orthostatic Tachycardia Syndrome) is one of the types of dysautonomia that I have. Symptoms and severity can vary from patient to patient, but this documentary will give you an idea of some of the challenges that those of us with POTS face.



Changes: Living with Postural Orthostatic Tachycardia Syndrome

For more information on POTS or dysautonomia, visit http://www.dinet.org/.

Monday, August 3, 2009

What to Pray for, Beyond Physical Healing



As we pray for those with chronic illnesses, it is wise to pray not only for healing, as is our tendency, but to pray that God would accomplish His purposes through those illnesses.

I found this post on Randy Alcorn's blog to be very encouraging:
What to Pray for, Beyond Physical Healing
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