30 things about my Invisible Illness

1. The illness I live with is: Juvenile Dermatomyositis is the diagnosis that is the most debilitating and the one that I’ve lived with the longest. I also have some fibromyalgia, and was more recently diagnosed with primary aldosteronism and PCOS/insulin resistance.  On top of my illnesses, I also have high sensitivity to medications making it much harder to treat my illnesses.

2. I was diagnosed with it in the year: I was diagnosed with Dermatomyositis in 1993, at 9 years of age.

3. But I had symptoms since:  I had symptoms of dermatomyositis for at least two years before my diagnosis, although looking back I showed some minor indications even before then so it’s hard to tell exactly when it started.  There is no doubt that I’ve been sick since seven years of age, meaning that I’ve lived with dermatomyositis for at least 24 years.

4. The biggest adjustment I’ve had to make is: honestly, I’ve lived with this so long I can’t even remember what my life was pre-sickness.  I’d say the most difficult adjustment I have to make, generally speaking, is living within my limitations.  They do not stay the same and can vary greatly, even within the same week or sometimes the same day.  It’s a constant balancing act to attempt to not overextend myself while also doing as much as I can to preserve the strength I do have.

5. Most people assume: Wow, I could write a blog on what people wrongly assume about chronic illness (and one day I may).  I’d say one of the biggest lies that people assume is that you have some control over your health, and if you are sick, you’ve done something to get yourself there, or your not doing enough to get well.  That is completely untrue.  Sometimes the body retaliates and you have little control over your own health.  Just because I’m not “healed” yet, doesn’t mean than I’m not doing the best I can.  I face battles the majority of people know nothing about, and I do with it a smile.  If you are healthy, thank God for it, because it can literally be taken away from you in a moment. 

6. The hardest part about mornings are: Everything is hard in the morning!  My fatigue is always the most overwhelming in the mornings, and my pain is at it’s highest in the morning.  Most mornings I have to rest, because my body didn’t recharge enough the night before.  Insomnia is a common problem for us with chronic illness, and we struggle to keep going on little sleep.

7. My favorite medical TV show is: Please.  I have enough medical headaches without watching TV about it.  I don’t watch any medical TV, and instead watch stuff that makes me laugh or lifts my spirits.  Give me a sitcom like Laverne & Shirley, Andy Griffith, the Facts of Life, etc any day over a medical show. 

8. A gadget I couldn’t live without is: My phone & my computer are two things I really am thankful for because I have the ability to connect with others through them.  I’ve also grown extremely thankful for the medical equipment I have—my wheelchair allows me to go out of the house, my handrails allow me to shower independently, my toiler riser allows me to use the restroom unassisted.  I’m thankful for all those things and more because they make my life much easier.

9. The hardest part about nights are: Getting to sleep and staying asleep.  The nights can also be difficult emotionally, as if anything is bothering me, it is the night that I tend to think too much about it.

10. Each day I take __ pills & vitamins. (No comments, please)  19 (I think, if I counted correctly!) Many of those are the same pill, I just have to take more than one a day or take a higher dosage than one pill allows.

11. Regarding alternative treatments: I think you have to do what works best for you.  I will say though that “alternative” or “natural” does not equate “side effect free.”  I have had to discontinue natural supplements because of terrible side effects, sometimes due to the drug itself, sometimes due to inactive ingredients, and sometimes because the dosage is too high.  I also have to be mindful what I take in combination with the pharmaceutical medications I must take—if there are interactions I usually opt to continue with what is already working and what has been proven to be successful for my problem.  If I do add vitamins or supplements to my regimen, I always do it slowly.  I have found a few vitamins that have been overall helpful, but they have not provided a cure for my illnesses.

12. If I had to choose between an invisible illness or visible I would choose: Honestly, I know both worlds.  For years, my illness was “invisible” –it was very hard to see from the outside.  After I went downhill four years ago, my illness became more “visible.”  I miss the anonymity of having the “invisible” form because there were times I could just go shopping or do something “normal” and not having anyone notice I was sick.  Yet, sometimes it’s nice to not have people question that you are sick when it’s obvious that you are sick.  That said, if I could choose which I had, I would choose the invisible because that means I’m stronger and able to do more. 

13. Regarding working and career: To this point, it hasn’t been in the cards for me.  Sometimes that is hard, especially because I feel very judged for it. I know though that most days I just have the energy and strength to survive and very little left over.  If God chooses to grant me enough strength and energy one day to have a career, I will have a career.  If not, His purpose for me is different than the “typical,” and I am at peace with that.

14. People would be surprised to know: They only see a snapshot of my life.  Many times, when I’m out in public, I do my best to enjoy myself and not complain or draw attention to my illness.  I’ve always been this way, at both the best and worst times of my illness.  Because of that, I feel like people don’t see or understand that chronic illness is one of the hardest things anyone can go through.  The majority of the pain and suffering goes on behind closed doors, and so making assumptions based on the snapshot is unfair and unrealistic.

15. The hardest thing to accept about my new reality has been: Chronic illness is very lonely, and I still struggle with that to this day.  Visits and good friends are scarce, and sometimes that is what I struggle with more than anything.

16. Something I never thought I could do with my illness that I did was: Everyday, I’m reminded of things I thought were lost forever.  At my weakest point, I was as close to quadriplegia as I ever want to be.  I required help for even the most basic tasks and those abilities were gone for a long time, so I really thought they were gone for the rest of my earthly life at one point.  Everyday when I get out of the bed, walk more normally, open the refrigerator, reach down to pet my cats—I remember there was a time I couldn’t do those things.

17. The commercials about my illness: Don’t exist. My diagnosis is considered three in a million, and no one advertises for three in the million illnesses.

18. Something I really miss doing since I was diagnosed is: It’s hard for me to even remember life prediagnosis, but I think I miss how easy simple tasks use to be.

19. It was really hard to have to give up: When I started going downhill, I had to give up teaching preschool classes at my church.  It was an incredibly difficult decision, and to add insult to injury, some people even made snide and hurtful remarks about my leaving the position.  Even more difficult, I’ve not been strong enough to faithfully attend a church in the last few years.  I hope if my health continues to improve, those things will change in time.

20. A new hobby I have taken up since my diagnosis is:  Painting.  I haven’t painted in awhile, but I need to do that again soon.  I love when I can have a few minutes to create and make something beautiful out of my imagination.  Painting reminds me that we all bear the image of God, and God is the greatest artist who ever existed. 

21. If I could have one day of feeling normal again I would: Goodness, there are just too many choices!  My first thought was “go to Disney world” but then I think I should use that energy and strength for something more meaningful than Disney World.  Taking my niece and nephew to Disney World to have the best day ever is meaningful though, right?  I’m really not sure what I would do.  I would want to do something special that would encourage others and me for years to come that is for sure.

22. My illness has taught me: So much more than I can write in one blog, or answer to one question.  I would say more than anything, it has taught me compassion and given me the ability to minister in a way I would be able to without it.  Sharing in the suffering of Christ allows me to also be able to comfort those who suffer, and it’s a huge gift. (2 Corinthians 1:3-5)

23. Want to know a secret? One thing people say that gets under my skin is:  “You aren’t trying hard enough.”  I hate that phrase with a passion.  In reality, I try harder than anyone can imagine.   Living in a body that constantly attacks you, is really, really hard and if I wasn’t trying, I wouldn’t even be here.  On top of that, many times I’ve caused myself to have a setback by pushing past my limits and trying TOO hard. 

24. But I love it when people: See me as a person and not an illness, and allow me to be a part of their lives as well.   

25. My favorite motto, scripture, quote that gets me through tough times is: And lest I should be exalted above measure by the abundance of the revelations, a thorn in the flesh was given to me, a messenger of Satan to buffet me, lest I be exalted above measure.  Concerning this thing I pleaded with the Lord three times that it might depart from me. And He said to me, “My grace is sufficient for you, for My strength is made perfect in weakness.” Therefore most gladly I will rather boast in my infirmities, that the power of Christ may rest upon me.  Therefore I take pleasure in infirmities, in reproaches, in needs, in persecutions, in distresses, for Christ’s sake. For when I am weak, then I am strong.

2 Corinthians 12:7-10

26. When someone is diagnosed I’d like to tell them:  One day, I hope to write a blog on what I would tell the newly diagnosed.  If I could give them only one thought about chronic illness I would tell them, this will one of the hardest things you ever have to live with and one of the most rewarding.  You will learn so much through your illness, and if you allow it, it will refine you and strengthen you into a better individual. Life with chronic illness is hard, but it can still be meaningful and joyful if you allow it to be.

27. Something that has surprised me about living with an illness is: Once again, it’s hard to compare my preillness life to my illness life when I was so young—but I’d say the biggest surprise is how long it has gone on.  When you are first diagnosed, you never expect or think about the fact that you’ll still be fighting that illness 22 years later.  When I was typing this and realized I’d been sick for at least 24 years, my mouth dropped open.  It seems impossible that it has been that long in many ways. 

28. The nicest thing someone did for me when I wasn’t feeling well was:  Anytime you do anything to make me feel like you still know I’m here—whether it’s a call, an email, a card, etc—that means more than you know.  My illness may be mostly invisible, but I appreciate it when people do not make me feel invisible!

29. I’m involved with Invisible Illness Week because: I’m involved for two reasons. The first reason is that we are to be the light of the world and comfort those who are suffering, in hopes that they will come to know Christ.  There are so many people out there with chronic illness who do not know Christ, and who are getting a very poor picture of Christ because of the lack of awareness and compassion people have for those suffering with chronic illness.  The second reason can be summed up in Galatians 6:2-when we bear one another’s burdens we fulfill the law of Christ.  I am above thankful for those who have come along and helped bear my burdens, but that hasn’t always been my experience.  In fact, many Christians I know have not helped bear my burden, but in fact they’ve made that burden greater.  My hope is that with more awareness, it will increase understanding and compassion, and Christians will live more as they were called to live.

30. The fact that you read this list makes me feel:  I’m very grateful!  Reading through this shows you care, and I appreciate it!

I answered this meme three years ago as well.  I didn’t read it until after I answered these questions again.  I found it pretty interesting that some answers were very similar and others very different.  If you want to read what I wrote then, click here to be redirected to it.

Fighting your own invisible illness?  Find the template for your own meme here.

Invisible Illness Awareness Week

Today is the first day of invisible illness awareness week.  I had hoped to have a blog per day, and even started jotting things down to write about over six weeks ago, but I never got further than the brainstorming stage.   The last month seemed to be a month of setbacks. Invisible illness awareness week is here and it looks as if the blog per day thing will not be happening.  At least not this year. 

That is the life of chronic illness.  You make plans. You think you have a reasonable enough amount of time and energy to accomplish said plans.  Your body attacks you.  Your plans get pushed aside for more appointments or for more resting time.  Things that are not absolutely urgent have to wait, and blog posts fall into the "not urgent" category.

I felt pretty frustrated when I realized that once again, I was not making my goal to blog every day of invisible illness week.  It's been something I've hoped to do for the last several years.  Yet, August and September inevitably come and seem to be months that are covered up with doctor appointments and sickness.  Yet, as much as I wished that I had been able to reach the goal of one blog per day, I realize how incredibly appropriate it is that I missed that goal due to my illness.  

There is so much about invisible, chronic illness that people can't not even fathom unless they've lived it.  I know many people probably read this and think, how hard can it be to write a blog?  I only have a few hours of productiveness a day.  In those few hours, I have to try to everything I'd want to do or have to do.  Sometimes things like doctors appointments take priority.  Sometimes I'm fatigued and don't have the concentration to write.  Sometimes I'm discouraged and don't have the heart to write.  It seems so easy, but it's not.

Yet even in this I know there's most likely a reason.  Maybe God hasn't fully revealed to me what to say on a subject.  Maybe someone out there doesn't need my blogs today but will need them later.  Regardless, life goes on.  And I'm grateful, because even though there are still so many things I am not able to accomplish right now, I'm still able to do so much more than I was able to do four years ago.  

I still hope to have a few blogs this week.  The beginning of this week is pretty busy, but hopefully by the end of the week, things will slow down enough for me to catch my breathe enough to sit and write.  If not, well, I'll just write when I can.  Perhaps I need to start writing for next year now! ha!

#MyInvisibleFight

“Everyone you know is fighting a battle you know nothing about.  Be kind.  Always.”

Everyday I’m greeted with a reminder of a battle I’ve already fought and won.  It’s such a simple thing, something most people probably don’t give a second thought about as they do it. 

It’s simply having the ability to get out of the bed in the morning. 

There was a time I couldn’t do that, that one simple action that starts everyones day.  I lost the ability for well over a year.  The blankets felt heavy and consuming, and I couldn’t lift them off my body.  I would try to sit up, but my abdominal muscles would refuse to pull me up; even if I somehow found a way to sit up, then having the ability to rise off of the bed with weak legs was yet another impossible challenge.  I had to sleep with my cell phone, just so that I could call if I needed to get out of the bed. If for some reason the cell phone failed, I felt helpless.

I feel extreme gratitude for every ability I regain.  There are so many things I’m doing now, that were once impossible for me.  I don’t look at the world the same way that I did before losing everything.  I still have more battles to fight; but the battles I’ve won are met with an extreme joy.

The theme for Invisible Illness Awareness Week (September 28-October 4, 2015) this year is “My Invisible Fight.”  It’s an incredible relevant name to what chronic illness sufferers everywhere endure daily.  We are fighting, in various ways, against our bodies and what they’ve done to us.  Some chronic illness sufferers are fighting small battles, and others are literally fighting for their lives, but we are all fighting for something. 

Many people outside of the chronic illness community look at the lives of those with severe chronic illness and think by their lack of abilities and accomplishments they must be lazy and not trying hard enough.  That’s one of the biggest lies I’ve ever heard.  In reality, we are sometimes fighting the hardest for things that healthy people take for granted.  Things that are huge obstacles for our bodies seem so ordinary.  For instance, getting out of the bed in the morning, opening up jars, putting on clothes, styling our hair, or taking a shower without feeling like we’ve just run a marathon.  We aren’t lazy--we are warriors.  We are fighting against bodies that have betrayed us on a moment-by-moment basis.  Healthy people don’t understand the fight, because they don’t see the person in the midst of the war.  They don’t see the frustrations, the tears, or the disappointments.  They don’t experience the full out grief one feels when they can no longer do something that is seemingly small.  It’s heartbreaking.

We also fight for our emotional health.  When everything is taken from you, it’s easy to become bitter.  Yet, some of the most inspiring souls I know are those who have literally fought for their lives and yet not stopped smiling.  We fight for joy.  We fight for contentment.  We fight to stay grateful in the midst of searing pain and crushing disappointments.  We allow what could completely defeat us to become better, more compassionate and loving people.  We allow what could drive us away from God, to strengthen and solidify our faith. 

By the great grace of God, I’ve won battles that once defeated me.  I still have so many more battles to face, to conquer.  I still have great fatigue, and there are still abilities I have yet to reclaim.  Low chairs are my enemy and handicap accessible bathrooms, aren’t accessible to me.  I can’t go up stairs, and many of the things I can do, I do with great effort and sometimes pain.  I won’t let my body defeat me though, because everyday I start my day with the reminder of what I’ve already overcome.

I don’t know who all is reading this blog; maybe you are also fighting a chronic illness; or maybe you are completely healthy.  Maybe you are at a point where you can’t physically get out of the bed; if so, I want to remind you not to give up, that you are doing a good job, and that you are a warrior.  If you can physically get out of your bed in the morning--then please remember this blog and praise God for that blessing.

September!

It’s September, which means there are many important days for the chronically ill community coming up.

First of all, September is chronic pain awareness month.  Chronic pain refers to any pain that lasts for 12 weeks or longer.  I’ve dealt with chronic pain everyday for over twenty years now, and I can say it can be completely disabling and difficult to live with day in and day out.  Healthy people cannot truly relate to chronic pain, as it is a pain you only understand if you actually experience it.  It’s exhausting and ongoing.  Chronic pain does not just “go away” and cannot be solved by simple pain medication; it’s often something you just have to learn to deal with.  I’ve lived with pain for so many years now, that even on a “good” day, I’ve had to accept that I’ll most likely be in pain for the rest of my earthly days.  There does need to be more awareness, because so many people with chronic pain have felt their pain minimized and ignored by friends and family members, making the physical pain become emotional pain as well. 

Another important day to me and my fellow myositis warriors is September 21^st, Myositis Awareness Day.  I am hoping if my body allows to blog a little more about what a life with myositis can looks like. Myositis awareness day refers to awareness for Inclusion body myositis, polymyositis, and dermatomyositis.  I have the form of juvenile dermatomyositis.

And finally, September 28^th -October 4^th is Invisible Illness Awareness week, where people fighting multiple invisible illnesses come together to increase awareness of the many invisible illness that a person may fight.  This week includes ANY illness that people would not know, just by looking at the person, that they have a illness.  This can be any illness, from diabetes to depression to lupus to myositis.  Every person’s story is different, and some my have mildly affected quality of life issues, while others may be fighting for their lives.  The point is, a person doesn’t have to “look sick” to be sick, and often invisible illnesses are all that more frustrating because they are not validated by others, and those with invisible illness lack the proper support from their peers and feel isolated.

Because of all of this, my hope is to blog more this month.  I’ve actually been wanting to blog more, in general, but some days it’s all I can do to survive.  I’m thankful to be continuing to improve, but even on my best days I only have a few hours where I can function and keep up with stuff like my blog!  I am hoping though, as I continue to gain strength, that blogging will become more consistent! 

Thanks for reading, and I hope all my readers enjoy the upcoming entries!

Embracing the beautiful

For You formed my inward parts;
You covered me in my mother’s womb.
 I will praise You, for I am fearfully and wonderfully made;
Marvelous are Your works,
And that my soul knows very well.

 My frame was not hidden from You,
When I was made in secret,
And skillfully wrought in the lowest parts of the earth.
Your eyes saw my substance, being yet unformed.
And in Your book they all were written,
The days fashioned for me,
When as yet there were none of them.

 How precious also are Your thoughts to me, O God!
How great is the sum of them!
 If I should count them, they would be more in number than the sand;
When I awake, I am still with You. – Psalm 139:13-18

Do not let your adornment be merely outward—arranging the hair, wearing gold, or putting on fine apparel—  rather let it be the hidden person of the heart, with the incorruptible beauty of a gentle and quiet spirit, which is very precious in the sight of God. – 1 Peter 3:3-4

I read not so long ago that we can tell what we deeply care about by what grieves our hearts.  There are many things that come to my mind, but one thing that entered my mind after I read this was the epidemic I see today—women who are chained to poor self-esteem and low self worth. 

One doesn’t have to look far to see it.  Sometimes their words are filled with self-doubt and self-hatred, and other times they say nothing at all.  Sometimes it is seen in their eyes, you can tell just by the way they look at you they are afraid to be seen and to be known.  It is a look I know well, because many times, I’ve seen it in my own reflection. 

The lies of the enemy

Every woman’s journey to such a dark place begins with a single lie, a lie that comes from the enemy of our souls.  He’s been targeting us since the beginning of creation, using his sly words to weaken us and draw us away from our Creator.  Don’t believe me?  It’s all there in the Bible--read Genesis and see who Satan set out to deceive first—Eve. His lies may be different now, but they are still lies.

I don’t believe I was born with low self-esteem.  In fact, if anything I was born with vanity.  I never seemed to doubt that I was beautiful.  It didn’t occur to me in the first years of my life that I was anything except beautiful.  While I’m thankful to let go of the sin of vanity, somehow I’ve found myself at the other end the spectrum.  It’s a sin to hate, so any form of self-hatred is a sin.  But do we really have to live in either extreme?  I don’t think we do.

The first lie I remember wrecking my confidence came after my diagnosis.  I went from a thin, frail and beautiful young girl to one whose body was completely changed and swelled up due to prednisone.  I doubled my body weight in six months.  I had no real control over this, as the medication causes the body to not just gain weight, but it also causes redistribution of body fat to places that are undesirable, particularly the face, back of the neck, and abdomen.  In other words, you don’t just gain weight, you gain it in a very odd, unnatural way.  My skin was also red, due to my illness, another factor I had absolutely no control over.  The doctor I was going to at the time was pretty heartless.  In effort to “motivate” me she told me that “you need to do sit ups more because little boys don’t like fat girls with cherry tomato cheeks.”  That moment, one comment, began a lifetime struggle with my body image and self-esteem.  How I wish I could go back now and tell my former self, “Stephanie, what she said is not a reflection of who you are, but it says a lot about the cruel person she is.”  But at the time, I didn’t have that wisdom and just took her cruelty as truth.  It was the beginning of many experiences that would send a message to my soul that I was worthless, unwanted, and ugly.

Finding the truth

My three-year-old niece is into all things princesses and dress up.  She is confident and radiant and secure in who she is, and it’s a beautiful thing to watch.

“I look wonderful!,” she exclaims. “I’m a princess!” 

I realized the other day that in her three-year-old wisdom, she’s living closer to the truth than I have been.

She is wonderful.  She is fearfully and wonderfully made.  And one day, we all hope she’ll come to know Christ, making her a daughter of the King of Kings, a Princess.  I love to watch her embrace and believe in herself.  The thought of her one day battling the lies that I’ve battled all my life, completely breaks my heart.  I don’t ever want her to lose her confidence, her light.  More than that, I don’t want to be a bad example to her in form or fashion.  I’m her “Aunt Stephanie.”  How I live has the ability to affect her. And I know it’s time for a change.

I refuse to continue living in the shadows of the lies I have mistakenly believed all of these years. 

Embracing the beautiful

Women were created as the crown of creation.  We were made in the image of God.  We are a special reflection of God and His character.  We represent His heart, His beauty.  We have value and worth.  We have immense value and worth.  Anything less than that—it’s a lie.  I may struggle with the lies for the rest of my life, but I’m going to do all I can to seek healing in this area.  I’m tired of living a life that is less than the best God has planned for me.  I’m not sure exactly what all God has planned for my life, but I’m certain that I can be much more effective in my purpose if I start embracing who He says I am, if I allow Him to take those broken parts of me and heal them into something beautiful.  I’m tired of embracing the lies; For the first time in my life I'm embracing the truth; I’m embracing the beautiful.

To all the ladies who are reading this—if any of this resonates with you, I strongly encourage you to seek healing.  It may be a long road.  I know I still have a long way to go, but I’m not giving up.  Actively seek healing.  Find every Biblical resource you can to overcome this area of your life.  I highly, highly recommend “Captivating” by John and Staci Eldredge.  Don’t forget, you are loved, you are special, and you have value and worth.