Having a chronic illness can rob you of your independence.  Suddenly you find yourself dependent on other people to do basic things you had always taken for granted, and this changes your relationships forever.

Before I got sick I was a super independent person.  I always preferred to do things on my own and avoided asking for help even when I really needed it.  With the onset of my autoimmune diseases, especially the neurological symptoms and symptoms that limited my mobility, asking for help became an unavoidable way of life.

Now I need help with even basic things like getting dressed or washing my hair – things I have done on my own for most of my life.  Those were the hardest things to ask for and accept help with at first.  It was frustrating for me and it was frustrating for my mom who initially found herself as my only caregiver.  Suddenly she was caring for me in a way she hadn’t needed to since I was a small child.  It tested our relationship.

At the time I felt very hurt at her frustration.  I wondered why she didn’t just automatically understand how much I had to humble myself to even ask for help in the first place.  It hurt when she responded with questions about whether I really needed the help or if I was feeling as badly as I was saying.  We fought a lot at a time when I really just needed her support.  Eventually I came to understand that I was failing to communicate.  I was also blinded by my own experience.  I was so caught up in dealing with the implications of a chronic illness and how it had shaken my world that I failed to see how profoundly it was affecting her as well.

But when I started to communicate this to her – that I knew how hard this was for her too  and that I appreciated all she was giving up to take care of me and that I knew it was also hard to watch her daughter get sick – the fighting tapered off.  I also found new ways to help her in return  that I could still do – mostly various types of computer and technical help.

When my mom simply couldn’t do it alone anymore, my need for help blessed me with two beautiful friendships in the form of two wonderful caregivers.  Sarina, my first caregiver, is more than a friend to me.  Born exactly one year apart, we say we are twins separated by a year at birth.  But it was odd at first having someone – a stranger – my age helping me with the very personal things I needed help with especially since I had been abandoned by several of my closest friends over the prior year.  They simply didn’t want deal with my new found illness and subsequent dependency.  Some stopped being my friend because they didn’t even believe I was actually sick and some of them just found it too much to handle and some I will never know their reasons.  In any case it hurt.  A lot.  But Sarina came in and loved me and accepted me and my illness.  She was truly a blessing and still is.

After Sarina moved away to further her career and get married, Melissa, my current caregiver, came into my life.  She is an angel in my life.  She, like Sarina, is always there for me.  We laugh a lot.  And through both of them I found that though I was sick I could still be a good friend in return.  I could still listen and be there for people.  I didn’t just need help from them, I could give it in return.

But at the end of the day I am still dependent on other people.  And I still hate that.  I don’t think I’ll ever not hate watching my mom or Melissa assemble my back backbreakingly heavy wheelchair.  I hate that I can’t just do it myself.  Though in a lot of ways, my relationships have grown and been strengthened by my need for help, and for that I am grateful, I am still eager to find ways to lessen my dependency.

So I am VERY pleased to announce that I’ve taken a step in the right direction – nine of them.  Last week  I walked (with the help of my walker) nine steps.  It was the first time I’ve walked in over a year!  I was having a low pain day and just went for it.  It was incredibly painful but even more incredibly worth it!

This post is my entry in February’s Health Activist Blog Carnival. If you’re interested in participating too, you can read all about it HERE.

I don’t really know what to write.  I’ve been kind of a writing funk.  More precisely the stress of everything it getting to me.  I’m in trouble financially, my doctors aren’t currently doing anything to help me get better, and I’ve been doing a lot of “being there” for my friends and family which I am more than happy to do – it’s just that its emotionally draining.

It’s so important to stay stress free when you have any chronic illness but especially one that’s autoimmune related.  High levels of stress lead to flareups of my illness.

Once upon a time I was a cutter.  Since then I have found other ways to de-stress that don’t involve hurting myself.  Now I have a little chocolate therapy on occasion (or rather frequently), I watch a favorite movie (usually The Princess Bride when I’m not feeling well), I talk to a friend or my sister about what’s bothering me, I scrapbook, or I force myself to write in this blog.  I’m feeling a little better already.

What do you do to de-stress when the road gets too bumpy?

A page from my Peace Book.

Sometimes you expect one thing and get another… especially when living with multiple chronic illnesses. I finally saw the Sjogren’s specialist at yesterday.  He spent a good 40 minutes pouring over my records and taking notes on them.  He listened to my insanely long list of symptoms.

The interesting thing is he came to the conclusion that Sjogren’s probably isn’t my main diagnosis.  He really feels that I have some sort of autoimmune neurological disorder going on causing the seizures, episodes of paralysis, tremor, severe pain upon standing that has me in a wheelchair, motility problems, bladder problems, memory problems, and recent facial drooping and uneven pupil dilation.  He thinks the Sjogren’s is secondary to whatever is causing all of that.

He’s going to be coordinating with my normal rheumy to get me a lot more specific tests to work me up for this and try and figure out if this is originating in the peripheral nerves, ganglia, or brain.  He said he suspects that it is probably in both either the peripheral nerves or ganglia and also in the brain.  He also probably wants to me travel to John Hopkins to see a neurologist specializing in this there.  He said my case is one of the most unusual and complex and in my situation I need to go to the top doctor even if he or she is located on the other side of the country.

I’m not totally sure what to think and am still processing this.  I went to him expecting to discuss other treatment options for Sjogren’s and am now going to be pursuing an alternative primary diagnosis instead.

I’m also feeling pretty scared.  I feel like I’ve been thrown back out into unknown territory again.  Back trying to tread water in the deep end of the pool.  I also know that the kind of disease he thinks I probably have is not something that is good to be diagnosed with.  I’m also frustrated that no one has really seriously pursued the neuro stuff thus far and that I had to drive 3.5 hours to see a Sjogren’s specialist to figure that Sjogren’s probably isn’t my main problem.  Sigh.

I guess part of it too is that another whole year of my life has rolled by… I just turned 26… and now we are back at trying to diagnose me again which means its going to be even longer till we can start a treatment other than prednisone again which means its going to be even longer before I have some hope of having some semblance of a “normal” life back again.  Maybe its because it’s that time of the month right now as well, but I’m just feeling really upset and like this is a step backwards.  I know intellectually it is really maybe FINALLY a step in the right direction, but it sure doesn’t feel that way right now.  I’m 26 and I want my life back.  I’ve been too ill to have a “normal” life since I was 18.  I’m just so tired of it all.

I guess the worst part is the not knowing what’s going on or what to expect.  If the doctor were to just tell me I’m going to be stuck in a wheelchair for the rest of my life at least I could learn to live with that fact.  But I don’t have any facts right now to learn to live with so I can grieve and move on.  Yes I suppose that’s the worst part of all.

I feel so lost right now I don’t know what to do with myself really.

In the meantime, my mom and I are staying at my grandma’s since she lives by this new Sjogren’s specialist which was 3.5 hours away from where I live.  We’ll be driving back on Wednesday.  The Sjogren’s specialist said he’d get back to me in about 2 weeks  – after he has a chance to talk to my current rheumy and review all the neurological testing I’ve already had done, so that we don’t repeat any tests unnecessarily.  Then there are a bunch of specialized neuro tests that I’ll need to have done either around here or at Johns Hopkins.

Intellectually I know this is a good thing and that finally getting the correct diagnosis will lead to the right treatment that will eventually get me healthier and able to live more of a life.  Right now I’m just feeling kind of depressed about the whole thing.  I’ll be okay though.  Just takes a little time to process all of this.

In the meantime I’m staying more than busy.  I’ve been continuing on with National Novel Writing Month where you try to write a 50k word novel in 30 days.  So far I’m at about 12k words, so I’m doing fairly well.  I’ve been letting a handful of beta-readers read along as I write it, and the feedback has been extremely positive and motivating for me to keep writing.  I’m also working on designing two online games and working on a huge needle point.  So at least I’m not bored. 

It all really comes back to maintaining hope.  Emotionally this has been a bit of a setback for me because I was expecting answers and got more questions.  But I choose to maintain hope that this will lead me to the right treatment in time.  Ultimately I already have whatever I have.  The diagnosis — the label — won’t change that.  I am learning to live with whatever it is regardless.  And I have faith in myself that I will get through this.  As long as I don’t loose hope I haven’t really lost anything.  There are always new options and opportunities I can make for myself if I remain hopeful and open to them!

Sometimes in the face of adversity you just have to stand tall.

My doctor woke me up on Sunday morning to tell me that I may have a blood disorder – Polycythemia. Unless there’s been a mistake either with the lab or the blood draw itself, I am making too many red blood cells and my iron is much too high. He was hesitant to tell me what might be causing it, but if the repeat test I got today still comes back high he wants me to go see a Hematologist. I looked it up myself and the possibilities of the causes are rather frightening… ranging from cancer to a terminal illness to kidney disease.  Needless to say I’ve been feeling rather anxious about it.

In addition, I’ve started tapering my Prednisone dose again post face drooping.  My neurological symptoms of my brain inflammation have been coming right back.  My tremor especially has been so bad I am having trouble doing simple tasks.  It’s so frustrating I just want to cry.

So this evening talking to Melissa, my caregiver, about it I broke down.  I’m so tired of it being one thing after another!  It’s two steps forward one three steps back.  So I decided to take a stand.  Literally.  I wanted to see how long if at all I could bare the joint pain I get while standing.

We turned my wheelchair around so I could use the back of it to hold myself up, and Melissa sat in the chair to help weigh it down so it wouldn’t tip.  Trembling I slowly pulled myself to my feet.  It was agony.  But I shifted my weight until I found a bearable “sweet spot”.  And then I stood there for a over a minute!

It was excruciating and exhausting.  I needed to lay down afterward and take some extra pain medication.  But the victory was well worth it!  I stood for longer than I’ve been able to in over a year! I showed my illness who is boss!

I still have high hopes that the Sjogren’s specialist I’m seeing on November 9th will have some new treatment options for me that will significantly help my joint pain and neurological symptoms.  But in the meantime, I will continue to take a stand against my illness.

Lisa Copen joins us today for an interview as the founder of National Invisible Chronic Illness Awareness Week. This year it is September 14-20, 2009 and there are lots of ways to get involved, including a free 5-day virtual conference. Lisa is on a blog tour to help people know about the event and how it can specifically encourage you.

Thanks so much for joining us today Lisa here at my blog, Novel Patient.

LC: 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.

What makes you a “novel” (or unique) patient?

Actually, I don’t think I am unique at all. I see people every day who have experienced more disabilities, surgeries and medical complications than I have. Ironically, until last year I’d never spent an evening in the hospital, and then I ended up with the flesh eating virus in an ankle wound and my first stay was 7 days! It was quite an experience and even though it was not fun, the months afterward dealing with the IV antibiotics and home health care, etc., it certainly provided some new insight and an appreciation for people who go through this months and sometimes even years of that, like your self.

If anything, I guess I would say that I tend to become obsessed with new projects rather than getting depressed. My personality just won’t let me sit still long, so even when I am feeling terrible, I’m trying to figure out what I can do that is constructive. Even in the hospital I was taking notes for future articles and writing down things the medical staff did or said that I wanted to remember. I stay busy as a coping skill so when I really can’t “do” but just have to “be”, it can be hard to not feel my sense of purpose slipping away.

Speaking of staying busy, tell us about National Invisible Chronic Illness Awareness Week. That’s quite a mouthful!

LC: It is. A lot of times we just call it Invisible Illness Week. 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.

Explain to me what a virtual conference is.

LC: A wonderful opportunity to “attend a conference” without every having to get dressed! The main part of the Invisible Illness Week is our 5-day virtual conference–which is completely free–September 14-18. There are 20 speakers who are experts in their area and with chronic illness they will be giving a 40-minute presentation and then taking live calls. The seminars are M-F, 4 times a day on a variety of topics: going to college, marriage, applying for disability assistance, cleaning, finding the right job, faith, preparing for surgery and many more. All are free, listened to live or later, and even downloaded from itunes to your ipod or purchased on a CD.

That sounds amazing. So, do you have last year’s seminars available?

LC: They are available. Before 2008 we used a chat room for seminars so we had written transcripts, but now one can hear 2008’s workshops directly from a computer, at tunes, or on a CD.

I know many of us would love to opportunity to go to a 5-day conference but ironically, because of our illness, things like traveling, finances, sitting that long, etc. it’s just not possible, so this is an ideal solution.

LC: isn’t it? Ironically, we started our virtual conference years ago, but now with the economy more companies and organizations are making this a popular trend.

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

LC: For a few reasons. I began Fest 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.

I also saw lots of family members, caregivers, doctors, churches, etc. who wanted to reach out to people with illness, but they said all the wrong things.  Eventually they distanced themselves from their loved ones because they just didn’t understand illness or how to respond to it.

The fact that illness and pain is invisible to see can make it hard for healthy people to understand. And those with illness can easily become bitter when their loved ones believe it is being exaggerated. It makes for a sad situation all the way around and I thought communication could be a helpful first step.

I have experienced this kind of thing before, and I know many of my readers will find it sounds very familiar.

LC: It does, doesn’t it? Even those of us who cope rather well with our illness on a day-to-day basis can still have moments of frustration. We may park legally in a disabled parking spot and we get the look from someone walking by. A friend may ask, So are you all better now? People don;t always comprehend the difference between being sick and being chronically ill.

So this is what made you decide to start Invisible Illness Week? To start some communication about these different issues and emotions?

LC: Yes, I wanted to bring people together to encourage one another. I saw people bursting with joy when they had every reason not to and I knew they could encourage others.

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.

What illness do you live with, Lisa?

LC: 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.

I heard that you type with just a few fingers.

LC: Yes, it’s true. I use just three fingers and my two thumbs to type. One adapts. I think I still can type about 50 words a minute, but sometimes my fingers start to go numb. I have a voice program I can use, but I am a fast talker and tend to get impatient with its limitations.

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

LC: Thank you for asking because just by helping us spread the word, for example, sharing about this blog post or by linking to it or posting it on Facebook, is the perfect ways to help our grassroots cause. I probably don’t have to tell you that we don’t have a marketing budget! When people introduce their friends  or family to her virtual conference or tweet out our twitters or articles, they are making a significant difference. We also have some fun items to help spread the word like buttons, and tote bags, silicon bracelets that say “Invisible Illness, Visible Hope,” awareness pins, and of course bumper stickers.

Our theme this year it 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.

How has blogging and twittering and other forms of social media made a difference? Has it helped in how you’ve been able to let people know about Invisible Illness Week?

LC: Absolutely. Exponentially! For example we’ve done a series of tweets on 20 things not to say to a chronically ill person and 20 things to say. Our twitter hashtag is #iiwk09 to find Invisible Illness Week tweets easily. A lot of interesting conversations have been spurred by these tweets. Be sure to follow us @invisibleillwk on Twitter!

We have over 1600 people who have joined our cause on Facebook. And we have some amazing prizes we are giving away to people involved in these different outreach areas.

There are so many people who feel really alone, as if no one in the world can possibly understand how much they are suffering. What would you tell these people?

LC: If I could I would just give them a long hug and sit there beside them to listen first. Listening is one of the hardest things to do! I struggle with it myself! But I know that is what people need.

Secondly, I would also validate that they are right–no one really can understand what they are going through. Illness is a unique and lonely experience. That said, there are a lot of ways to connect with people who understand more than they may expect; they just have to find them. There are lots of ways online to connect when you can’t drive to a support group. Our social network is Rest Ministries Sunroom and I recently began Illness Twitters to connect people who Twitter about illness or health issues.

And lastly, since my faith is in the Lord, I couldn’t let them walk away without sharing how knowing God has a plan for my life, despite my illness, has kept me going. I would want to tell them that despite any bad experiences they may have had at churches or with other Christians, God still has a “Plan A” for their life. The illness hasn’t bumped them down to “Plan B.” That all may sounds cliche. I know that. But every day I hear people who say their faith in God is the only thing that gets them through it.

You have written a book that gives 505 ideas on how people can reach out to someone who is ill, right?

LC: I do. It’s called “Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend.” It’s actually a very helpful book because even though I wrote it, I still refer to it frequently for fresh ideas on how to encourage someone who is hurting. Too often I get stuck in the rut of not being able to think of anything other than another meal.  Food is a nice gesture, but there are so many more creative and memorable ways to show someone you care. We also have cute little JOY gift certificate cards that you can give a friend when you are offering to do something for them. JOY stand for “Just Offering You” and one can fill out what they are able to offer (errands, laundry, taking your child for a play date, etc.) and when the best time is for them to volunteer to help.

That’s a terrific idea! I would imagine that it would be easier to accept help from someone if it looked like a gift certificate.

LC: Yes, that’s the idea. The cards are a perfect addition for a women’s ministry, a support group, or really anyone who wants a way to say, “I’d like to help. Here is what I am able to offer to do.”

Thank you again so much for joining us today, Lisa. And thank you for starting National Invisible Chronic Illness Awareness Week. I know that you have your own health struggles and that you are also a wife and mother, so I know it can’t be easy to do it all.

LC: Honestly, it’s not, but it has always kept me going too and I couldn’t do it without my husband’s support. Thank you for hosting me at your blog today! I hope all of your readers will visit us at National Invisible Chronic Illness Awareness Week and let your friends know about our free 5-day virtual conference! We’re going to have a great time!