So, this is unrelated to stuff I usually post about.
I made a choice months ago, that if a particular opportunity fell through... I was all done fighting for it.
It fell through.
It isn't God's will or plan. It isn't best. It isn't something that time will fix.
And it isn't something that can be ignored for a while and then readdressed.
This was the last chance.
And now it's gone.
I am numb, partly. And torn to shreds, partly.
So if you would be willing to pray for me... that would be good. Part of me says "No, don't give up." But part of me says "Enough is enough. No more money, no more pain, no more broken hearts."
And the second part is louder than the first.
So if you see me red eyed, don't be shocked. I've got a good reason to cry, a good reason to be angry. Don't try to fix it with words. Just let it go.
Thursday, September 22, 2011
Unrelated.
Tuesday, September 20, 2011
It's About Honor
Look at Matthew 7:6 with me:
Monday, September 19, 2011
Silence.
You may have noticed, if you're particularly observant, that there has been nothing aside from scheduled posts, for a while now.
I've been silent.
My whole life, I have wondered at the tradition known as "a moment of silence." It always seemed awkward, it seemed unnatural and unhelpful.
Then one of the Better Men... No, one of the BEST Men... threw off his chains and hurts and went to heaven. It was unexpected, to say the very least. It was tragic. It was heartbreaking. I wanted so badly to talk about it here, but... for once, I understood the silence. There are not words. What do you say about a man who is being buried not many years after his son, not many years after his granddaughter? Do you rejoice because Jim and Roy and Natalie are together? Do you rejoice because he has children and grandchildren there who never took a breath on this earth, and now he can know them? Do you rejoice because He is home and he is whole?
Yes.
And for so many... you mourn. Not for him. But for those who have the task of learning how to live now. How to exist in a world where he... isn't. For the memories that won't be made.
My heart hurts so much, for so many...
For his mother.
For his wife Rachel.
For his children and their spouses:
Eric and Toni, and their children Ethan, Katie, Emily, and Amanda
Roger and Amber, and their sons Evan and Gunner
Karl and Iris, and their son Israel
Marilyn and Ivan, and their children Trevor, Nicole, Devin, Wyatt, and Keegan
Judith and Craig, and their sons Luke and Ryan
For Carmen, who was his son Roy's wife, and their children Austin, Angel, and Garrett
And for so, so many more.
But I confess... tonight, the person on my heart the most is his youngest daughter, Judith. She is kind, and genuine, and has ready and quick smile, just like her daddy. Sparkling green eyes and a passion for her God and for her children. Gentle and humble.
It's not that Judith is the only one hurting... it's just that she is the one most like me. The one whose pain I can understand the best.
This song is for her. Because my words are all used up, and I need some time in silence.
Daddy Hung The Moon
~Jeff and Sheri Easter
We made the perfect pair
The best of friends
Daddy and me
I'd be walking on air
Every time he'd smile
And say he was proud of me
We said our prayers
He'd tuck me in then
I'd look in his eyes
I knew his love could fill an ocean
And light up an endless sky
Daddy hung the moon
Out-shined the stars
Put a song inside my heart
Daddy hung the moon
Oh I know it must be true
His smile could light the world
Of this green-eyed daddy's girl
God may have made the stars
But daddy hung the moon
His favorite words were
"I love you"
He always said
There was nothing I couldn't do
There's a world of hurt out there
Little boys and girls
Who've never known love like I do
If I had one wish
I'd wish to make it right
Oh I'd give them all a daddy
And make him just like mine
Cause daddy hung the moon
Out-shined the stars
Placed a song inside my heart
Daddy hung the moon
Oh I know it must be true
His smile could light the world
Of this green-eyed daddy's girl
God made the world
In seven days
The sun to shine and the clouds for rain
But when He made the sky
He saved one part for a little girl
Who knew in her heart
Daddy hung the moon
Out-shined the stars
Placed a song inside my heart
Daddy hung the moon
Oh I know must be true
His smile still lights my world
And I'm still my daddy's girl.
God may have made the stars
But daddy hung the moon
Sunday, September 18, 2011
NICIAW - Dissociative Identity Disorder NOS, PTSD, Depression, Anxiety
This is from an individual who did not provide a name to associate with his/her information.
1. The illness I live with is: Dissociative Identity Disorder Not Otherwise Specified, Post Traumatic Stress Disorder, Depression, Anxiety
2. I was diagnosed with it in the year: 1991
3. But I had symptoms since: I was a child.
4. The biggest adjustment I’ve had to make is: Making sure I feel safe.
5. Most people assume: I have my life together.
6. The hardest part about mornings are: waking up with hope about the new day
7. My favorite medical TV show is: MASH...an old one
8. A gadget I couldn’t live without is: computer
9. The hardest part about nights are: I have terrible nightmares.
10. Each day I take __ pills & vitamins. (No comments, please) 3 plus
11. Regarding alternative treatments I: am open to them
12. If I had to choose between an invisible illness or visible I would choose: invisible
13. Regarding working and career: I struggle to get by daily. I wear a mask.
14. People would be surprised to know: I was sexually, physically and emotionally abused from a very young age into adulthood.
15. The hardest thing to accept about my new reality has been: I will be healing the rest of my life.
16. Something I never thought I could do with my illness that I did was: have a professional career
17. The commercials about my illness: I don't know.
18. Something I really miss doing since I was diagnosed is: Not sure.
19. It was really hard to have to give up: Not sure.
20. A new hobby I have taken up since my diagnosis is: Not sure.
21. If I could have one day of feeling normal again I would: I don't know what "normal" is exactly.
22. My illness has taught me: to appreciate people and have compassion for others.
23. Want to know a secret? One thing people say that gets under my skin is: Why can't you just get over it?
24. But I love it when people: show care for hurt kids
25. My favorite motto, scripture, quote that gets me through tough times is: Philippians 4:13 "I can do all things through Christ who strengthens me." Also, "I yam who I yam." -- Popeye the Sailor
26. When someone is diagnosed I’d like to tell them: The diagnosis is not the total of who you are. You are so much more than someone with an illness.
27. Something that has surprised me about living with an illness is: not sure
28. The nicest thing someone did for me when I wasn’t feeling well was: Bought me and my family a Christmas tree one year when I was in the psych hospital.
29. I’m involved with Invisible Illness Week because: I was asked.
30. The fact that you read this list makes me feel: Cared about.
NICIAW - Interstitial Cystitis
Jay writes:
1. The illness I live with is: Interstitial Cystitis
2. I was diagnosed with it in the year: 2005
3. But I had symptoms since: 2002
4. The biggest adjustment I’ve had to make is: learning to quickly find restrooms in public places, and learning how to *politely* skip to the front of the line if it's there.
5. Most people assume: I don't know. I think most people don't assume anything, because I think most people don't think about it.
6. The hardest part about mornings are: waking up and feeling like my bladder is truly going to explode
7. My favorite medical TV show is: My family doesn't watch TV.
8. A gadget I couldn’t live without is: My computer, but that has nothing to do with the I.C.
9. The hardest part about nights are: being really sleepy and knowing I will have to get up in just a few hours to use the bathroom.
10. Each day I take __ pills & vitamins. (No comments, please) 1 Pill, Elmiron, 3 times daily.
11. Regarding alternative treatments I: believe in whole-body health, but I'm not aware of any alternative options specifically for the interstitial cystitis.
12. If I had to choose between an invisible illness or visible I would choose: visible. It would get me to the front of the restroom line easier.
13. Regarding working and career: aside from once having to explain to my boss that my frequent bathroom breaks were medical in origin, this hasn't impacted work or career at all.
14. People would be surprised to know: that this disease actually does hurt a lot of the time.
15. The hardest thing to accept about my new reality has been: I don't know. Reality hasn't really changed for me with this.
16. Something I never thought I could do with my illness that I did was: I have never thought my illness would hold me back from anything.
17. The commercials about my illness: There are commercials about I.C.? Really?
18. Something I really miss doing since I was diagnosed is: Again, it hasn't really changed my life. Though I do miss sleeping through the night.
19. It was really hard to have to give up: caffeine. When the doctor suggested it, I said "No way." But now, having finally done so... it does help.
20. A new hobby I have taken up since my diagnosis is: I organise bathroom races. Okay. No, I don't. I don't have a new hobby. I am hobby-impaired.
21. If I could have one day of feeling normal again I would: Go on a really long hike. And not pee in the bushes. I would hold it, until I was back to "civilization."
22. My illness has taught me: that self-pity is easy to do but hard to live with. Positivity and a good perspective are harder to maintain, but easier to live with.
23. Want to know a secret? One thing people say that gets under my skin is: Be thankful it's nothing worse, and it's just your bladder. "Just my bladder" actually really hurts and I really do not like being a slave to its whims.
24. But I love it when people: Graciously let me to the front of the line in the ladies' room without saying "You don't look pregnant, though"
25. My favorite motto, scripture, quote that gets me through tough times is: "This, too, shall pass."
26. When someone is diagnosed I’d like to tell them: Take your meds, stop drinking caffeine, and remember - this is not a death sentence or even a serious life-impairment sentence.
27. Something that has surprised me about living with an illness is: How resentful it makes me some days, and how even though it's not dangerous, it has made me contemplate things like a living will, what I want for myself when I get old, and what it's like for those who are seriously impaired by chronic illness that none of us can see.
28. The nicest thing someone did for me when I wasn’t feeling well was: My doctor said "You could take this medication - it will help."
29. I’m involved with Invisible Illness Week because: I read about it on someone's blog and realized that this could be my one chance to complain about explain what it's really like.
30. The fact that you read this list makes me feel: like this blog author actually does post submissions from other people.
Saturday, September 17, 2011
NICIAW - PCOS
This is from Dawn. She has polycystic ovarian syndrome (also known as PCOS).
In 1992 I had a period that lasted for 17 days. My mom, being concerned, took me in for my first ever "girly" doctor appointment. After the doctor examined me and asked me a few questions, he announced to my mom that I was still a virgin.. Oh, and that my body was producing a little too much testosterone. No big deal, he said and put me on birth control pills to help regulate my cycle.
NICIAW - Adult ADHD
This is from DJ.
1. The illness I live with is: Adult ADHD
2. I was diagnosed with it in the year: 1986
3. But I had symptoms since: 1981
4. The biggest adjustment I’ve had to make is: having to take medications. I have to consciously monitor what I am saying and how I am interacting, to avoid being obnoxious.
5. Most people assume: I'm just obnoxious, but I have no "real problems."
6. The hardest part about mornings are: waking up, of course.
7. My favorite medical TV show is: Grey's Anatomy; House
8. A gadget I couldn’t live without is: my Smartphone
9. The hardest part about nights are: winding down so I can fall asleep
10. Each day I take wellbutrin and ativan for anxiety, & occasionally vitamins. (No comments, please)
11. Regarding alternative treatments I: sought God and won, for a while.
12. If I had to choose between an invisible illness or visible I would choose: visible, because then people would understand and know what I struggle with. They wouldn't assume everything is fine, or that I just need to suck it up and deal with it.
13. Regarding working and career: I have to be careful how I interact with coworkers so I am not overbearing or obnoxious in opinions and decision making. Sometimes the ADHD causes me to "zone out" and I will spend several minutes staring at my screen, doing nothing.
14. People would be surprised to know: I'm a superhero at night. No, really, I am. Okay. They would really be surprised to know that I am actually a very gentle, trustworthy man.
15. The hardest thing to accept about my new reality has been: knowing that something I thought was gone for the rest of my life has come back
16. Something I never thought I could do with my illness that I did was: give up medication.
17. The commercials about my illness: are actually pretty honest.
18. Something I really miss doing since I was diagnosed is: watching TV without it becoming all-consuming, and having conversations without a driving need to control what's being said.
19. It was really hard to have to give up: caffeine
20. A new hobby I have taken up since my diagnosis is: computer programming.
21. If I could have one day of feeling normal again I would: finish at least one of the programs I have started.
22. My illness has taught me: patience.
23. Want to know a secret? One thing people say that gets under my skin is: "It was meant to be."
24. But I love it when people: recognize accomplishments for what they are.
25. My favorite motto, scripture, quote that gets me through tough times is: "I can do all things through Christ who strengthens me. Philippians 4:13
26. When someone is diagnosed I’d like to tell them: that they can still do everything they enjoy, and that they can still succeed and do very well at whatever they want
27. Something that has surprised me about living with an illness is: The amount of support I get from my wife.
28. The nicest thing someone did for me when I wasn’t feeling well was: a guidance counselor allowed me to drop a class when I was in high school, when the teacher was not going to allow it.
Friday, September 16, 2011
NICIAW - DID, PTSD, Depression, Diabetes, Asthma, PCOS, NCAH
G didn't fill out a survey, but did share the following:
I previously suffered from DID, PTSD, and Depression. I have no current mental diagnosis, but I will NEVER be totally "over it." My physical challenges are visual impairment, diabetes, asthma, and PCOS (but I suspect the PCOS was a misdiagnosis and I may really have NCAH-- "invisible intersex"-- but I have no way to find out because I have no job and therefore no access to medical care.)
I'm not disabled enough to receive any kind of assistance but not able enough to receive unemployment (because I left my last job due to disability.) I am scratching out a living doing the only thing I can do with the resources available to me: sell my books. I made $60 last month. The toughest thing to live with about having a disability is being POOR.
NICIAW - Dissociative Amnesia or Dissociative Disorder NOS
The name I use here is going to be "BlackFrog."
1. The illness I live with is: Dissociative Amnesia or Dissociative Disorder NOS (not otherwise specified). But, have had several diagnoses over the years.
2. I was diagnosed with it in the year: 2011
3. But I had symptoms since: at least since 1979
4. The biggest adjustment I’ve had to make is: Accepting the latest diagnosis and dealing with what caused it.
5. Most people assume: That I'm too healthy to be that - I function too well.
6. The hardest part about mornings are: Getting motivated to live and do the basic parts of living.
7. My favorite medical TV show is: I don't watch any.
8. A gadget I couldn’t live without is: Anything that plays music
9. The hardest part about nights are: Getting proper sleep
10. Each day I take _0_ pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: Am open to any that may pass my way.
12. If I had to choose between an invisible illness or visible I would choose: Invisible.
13. Regarding working and career: I am considered permanently disabled by the federal government, but am a stay-at-home mom.
14. People would be surprised to know: How well I can pretend to be okay.
15. The hardest thing to accept about my new reality has been: Is that it was caused by what my father did to me.
16. Something I never thought I could do with my illness that I did was: Survive this long.
17. The commercials about my illness: don't exist.
18. Something I really miss doing since I was diagnosed is: Being clueless as to why I am the way I am.
19. It was really hard to have to give up: the concept that my mental health problems were organic.
20. A new hobby I have taken up since my diagnosis is: N/A
21. If I could have one day of feeling normal again I would: Take my children and go do the fun, normal things families do together.
22. My illness has taught me: How much damage the brain can do to itself just to protect itself.
23. Want to know a secret? One thing people say that gets under my skin is: When they tell me that the things I can remember are wrong. They tell me because I cannot remember so much, that I twist the memories I do have into pure fiction.
24. But I love it when people: Accept me as I am.
25. My favorite motto, scripture, quote that gets me through tough times is: "A child who can count to 5, sees infinity in a dozen eggs."
26. When someone is diagnosed I’d like to tell them: Be who you are... no label changes who you are.
27. Something that has surprised me about living with an illness is: How little people believe that I'm capable of having a bad day.
28. The nicest thing someone did for me when I wasn’t feeling well was: Compose an entire music album about my struggles.
29. I’m involved with Invisible Illness Week because: I was openly invited to and maybe someone will hear us.
30. The fact that you read this list makes me feel: Like you already know... or you're willing to learn. That makes you beautiful.
Thursday, September 15, 2011
NICIAW - Pulmonary Fibrosis and Bronchiectasis
This is from Smurf.
1. The illness I live with is: Pulmonary Fibrosis and bronchiectasis.
2. I was diagnosed with it in the year: 2007.
3. But I had symptoms since: some symptoms present from birth which developed into above conditions.
4. The biggest adjustment I've had to make is: Regular hospital treatments/stays.
5. Most people assume: I have a bit of a cough, but otherwise am fit and healthy.
6. The hardest part about mornings are: Breathing.
7. My favorite medical TV show is: None, avoid them.
8. A gadget I couldn't live without is: Portable nebuliser that works in the car.
9. The hardest part about nights are: Breathing
10. Each day I take 30-57 pills & vitamins.
11. Regarding alternative treatments I: Try anything.
12. If I had to choose between an invisible illness or visible I would choose: Invisible. on the rare occasions I wear oxygen nasal tubes in public I can't bare the looks of pity I get.
13. Regarding working and career: I am lucky to have an understanding employer
14. People would be surprised to know: I am scared about my condition and when I wear lipstick, its to hide that my lips are blue through low oxygen.
15. The hardest thing to accept about my new reality has been: Life expectancy and transplantation prospect.
16. Something I never thought I could do with my illness that I did was: Snorkel in the sea
17. The commercials about my illness: I don't know.
18. Something I really miss doing since I was diagnosed is: Not worrying about medication and correct dosages and times.
19. It was really hard to have to give up: The partying lifestyle
20. A new hobby I have taken up since my diagnosis is: None
21. If I could have one day of feeling normal again I would: Go scuba diving and run everywhere
22. My illness has taught me: To take each day as a new one
23. Want to know a secret? One thing people say that gets under my skin is: I thought you were a smoker coughing like that.
24. But I love it when people: Don't underestimate my capabilities when they know of my condition.
25. My favorite motto, scripture, quote that gets me through tough times is: 'Thats life'
26. When someone is diagnosed I'd like to tell them: Don't just see a death sentence
27. Something that has surprised me about living with an illness is: The amazing people I have met along the way.
28. The nicest thing someone did for me when I wasn't feeling well was: Arrange a surprise birthday party when I was in hospital- everyone on the ward got involved and had fun.
29. I'm involved with Invisible Illness Week because: the saying 'don't judge a book by its cover' came to mind when reading about it.
30. The fact that you read this list makes me feel: Heard
NICIAW - Migraines, PTSD, Depression, Alcoholism, Fibromyalgia, Sleep Apnea, Graves Disease, Hypthyroidism
This post comes from Sola
1. The illness I live with is: Migraines, PTSD, Depression, Alcoholism, Fibromyalgia, Sleep Apnea, Graves Disease, Hypothyroidism
2. I was diagnosed with it in the year: Migraines: 1994, Alcoholism PTSD and Depression: 2004, Fibromyalgia and Sleep Apnea: 2007, Graves Disease and Hypothyroidism: 2010
3. But I had symptoms since: as long as I can remember.
4. The biggest adjustment I’ve had to make is: Learning to ask for help, accepting that I can't be totally self-sufficient, and lowering my expectations for what I can do in a day.
5. Most people assume: I'm young and healthy
6. The hardest part about mornings are: Getting out of bed when I'm in pain and my body doesn't want to move
7. My favorite medical TV show is: Grey's Anatomy
8. A gadget I couldn’t live without is: Pill Sorter
9. The hardest part about nights are: Being alone with memories of my abuse and convincing myself to go to bed when that's where I was hurt.
10. Each day I take __ pills & vitamins. (No comments, please) 22-32
11. Regarding alternative treatments I: get massage, see a chiropractor and meditate. I think it's frustrating that insurance doesn't pay for the things that help me the most.
12. If I had to choose between an invisible illness or visible I would choose: Visible
13. Regarding working and career: I haven't been able to work in 18 months. I miss my job, having somewhere to go every day where I felt useful and could help people. I'm in school, but I don't know if I will ever be able to work again. I hate it when people ask me how my job is going because I feel so ashamed that I am not able to work.
14. People would be surprised to know: I dream of hiking and rafting the Grand Canyon some day, but don't know if I will ever be able to.
15. The hardest thing to accept about my new reality has been: That I'm too sick to be able to hold down a job and show up every day.
16. Something I never thought I could do with my illness that I did was: Learning to stand up for my needs with doctors. Getting over my fear of needles and talking about really intimate body functions.
17. The commercials about my illness: make it sound like I could just take a pill and make it all better. Don't exist for PTSD, migraines, Graves disease or hypothyroidism.
18. Something I really miss doing since I was diagnosed is: Yoga, kayaking, hiking, swimming on a team,
19. It was really hard to have to give up: my job
20. A new hobby I have taken up since my diagnosis is: Knitting
21. If I could have one day of feeling normal again I would: Go White Water Rafting
22. My illness has taught me: To appreciate every day and the little things. Not to take anything for granted
23. Want to know a secret? One thing people say that gets under my skin is: That people on public assistance are lazy
24. But I love it when people: Listen. Sit with me when I cry. Give me hugs. Acknowledge how much I have been through. Tell me I'm a strong survivor, brave or that they admire me.
25. My favorite motto, scripture, quote that gets me through tough times is:
"Somebody told me that the darkest hour comes right before the dawn,
And I will find my way back to myself if I could just hold on,
Hold on,
To the light.
And it's going to be all right.
I know it's going to be all right.
Cuz love is on your side.
Don't fear your life.
Cuz it's going to be all right."
~"Dawn" by Gina Bredlove (it's a song)
26. When someone is diagnosed I’d like to tell them: Just live in today
27. Something that has surprised me about living with an illness is: that everything I go through makes me stronger
28. The nicest thing someone did for me when I wasn’t feeling well was: When my girlfriend tells me she loves me and wants to be in my life despite the fact that I'm not always able to do fun things.
29. I’m involved with Invisible Illness Week because: I want people to stop and think that every person you meet is going through something and doing the very best they can with what they have.
30. The fact that you read this list makes me feel: Hopeful that someone will work to make more resources available to struggling people.
Wednesday, September 14, 2011
NICIAW - MS and/or Lyme Disease
From Liz
1. The illness I live with is: Either Lymes Disease or Multiple Sclerosis. Not sure.
2. I was diagnosed with it in the year: January 2011
3. But I had symptoms since: worst symptoms in December 2011
4. The biggest adjustment I’ve had to make is: learning what I can and can’t do
5. Most people assume: that I am perfectly healthy
6. The hardest part about mornings are: knowing I have to get up and give myself a shot, every day!
7. My favorite medical TV show is: Greys anatomy
8. A gadget I couldn’t live without is: Autoject 2 that helps with the injections so I don’t actually have to stick the needle in.
9. The hardest part about nights are: Sometimes getting to sleep
10. Each day I take _0_ pills & 1 vitamins. (No comments, please)
11. Regarding alternative treatments I: have seen a homeopathic doctor for the lymes.
12. If I had to choose between an invisible illness or visible I would choose: visible
13. Regarding working and career: been trying to figure out things that I will be able to do
14. People would be surprised to know: that I am still as active as I ever was. Besides my eyes and fatigue, it hasn’t slowed me down a whole lot
15. The hardest thing to accept about my new reality has been: the fear of what the future might be
16. Something I never thought I could do with my illness that I did was: Continue being a wildland firefighter.. but have kinda decided to move on to something less strenuous.
18. Something I really miss doing since I was diagnosed is: having the freedom to eat whatever I want because of the drugs ive been taking for the Lymes
19. It was really hard to have to give up: Sugar
21. If I could have one day of feeling normal again I would: not want it to end and make the best of it
22. My illness has taught me: To be patient and try to do the best I can and appreciate the people around me.
24. But I love it when people: are just willing to listen to my complaints
26. When someone is diagnosed I’d like to tell them: it sucks, but just take things day by day and learn how you are going to move on and live with it.
27. Something that has surprised me about living with an illness is: how quickly symptoms show up and how long it takes for them to go away.
28. The nicest thing someone did for me when I wasn’t feeling well was: Wasn’t Able to drive for a while this summer because of my eyes acting up, so My mom drove to Northern Minnesota to pick me up, and my Father in Law took me back
29. I’m involved with Invisible Illness Week because: Its not fun not feeling good, and having vision problems for months at a time and no one else can see it.
30. The fact that you read this list makes me feel: Happy to know someone cares
NICIAW - Fibromyalgia
This is from Twich. Twich lives with Fibromyalgia.
1. The illness I live with is: Fibromyalgia
2. I was diagnosed with it in the year: 2010
3. But I had symptoms since: 1984
4. The biggest adjustment I’ve had to make is: trying to pace myself.
5. Most people assume: I'm just lazy and flaky.
6. The hardest part about mornings are: Not feeling refreshed and the pain caused by morning stiffness.
7. My favorite medical TV show is: Mystery diagnosis.
8. A gadget I couldn’t live without is: The iPod touch app that keeps track of my meds.
9. The hardest part about nights are: Trying to sleep.
10. Each day I take: 8- 12 pills & 2 vitamins. (No comments, please)
11. Regarding alternative treatments I: Use various types and believe in most alternative treatments.
12. If I had to choose between an invisible illness or visible I would choose: Visible.
13. Regarding working and career: I may have to quit, if I can keep on with my job, I've been told I need to have a "Modified work description" Meaning drastically less hours and responsibilities than I'm used to.
14. People would be surprised to know: My pain level is significant and constant, I just don't talk about it often.
15. The hardest thing to accept about my new reality has been: That it affects EVERY aspect of my life, both mental and physical.
16. Something I never thought I could do with my illness that I did was: maintain a social life.
17. The commercials about my illness: Don't really cover a fraction of what this illness is really like.
18. Something I really miss doing since I was diagnosed is: 4 hour walks with friends.
19. It was really hard to have to give up: Pushing my limits.
20. A new hobby I have taken up since my diagnosis is: It's not new, but I paint more.
21. If I could have one day of feeling normal again I would: Go got a run or long walk.
22. My illness has taught me: To slow down sometimes and take care of myself.
23. Want to know a secret? One thing people say that gets under my skin is: "But you look good!"
24. But I love it when people: say "I understand, that must be hard."
25. My favorite motto, scripture, quote that gets me through tough times is: Improvise, adapt, overcome.
26. When someone is diagnosed I’d like to tell them: Don't give up, it gets easier to live with.
27. Something that has surprised me about living with an illness is: How different it feels when you have a reason for feeling this way.
28. The nicest thing someone did for me when I wasn’t feeling well was: When my little sister drew me a get well picture
29. I’m involved with Invisible Illness Week because: It's important to spread awareness- Just because you can't physically see it, doesn't mean it's not just as debilitating.
30. The fact that you read this list makes me feel: Like I may have made a difference.
Tuesday, September 13, 2011
NICIAW - Anemia (Iron Deficiency)
This is from Niccy:
1. The illness I live with is: Iron Deficiency Anemia
2. I was diagnosed with it in the year: 2001
3. But I had symptoms since: 1998
4. The biggest adjustment I’ve had to make is: Getting regular blood draws, and having to miss school, work, and life in general on days when I'm just too tired
5. Most people assume: I am just lazy and whine a lot
6. The hardest part about mornings are: Forcing myself to get out of bed when just moving is hard to do
7. My favorite medical TV show is: House
8. A gadget I couldn’t live without is: My cell phone (what does that have to do with anemia?)
9. The hardest part about nights are: being so tired I cannot stay up any longer, but not being SLEEPY yet
10. Each day I take __ pills & vitamins. (No comments, please) It depends on what my levels are currently. Usually at least 3.
11. Regarding alternative treatments I: do modify my diet and I have tried "natural supplements" but I am skeptical.
12. If I had to choose between an invisible illness or visible I would choose: visible. I hate being called lazy. If people could see my illness, maybe they would be more understanding.
13. Regarding working and career: I take more sick days than many people. My bosses in the past have thought that because my anemia is caused by iron deficiency, I can fix that and be cured. They don't understand that this is a chronic issue for me.
14. People would be surprised to know: inside, I feel like an energetic, fun, very athletic person - trapped in a broken body.
15. The hardest thing to accept about my new reality has been: that sometimes, I just do not have enough energy to do the things I want.
16. Something I never thought I could do with my illness that I did was: run in a 5K with my friends.
17. The commercials about my illness: are depressing and not informative.
18. Something I really miss doing since I was diagnosed is: nothing, really. I felt sick for a few years before I was diagnosed, so that particular day didn't really change anything at all.
19. It was really hard to have to give up: there's nothing I gave up.
20. A new hobby I have taken up since my diagnosis is: I have gotten pretty good at doing Anime-style drawings.
21. If I could have one day of feeling normal again I would: spend the whole day doing things, without thinking about taking my iron supplements and without an afternoon rest period.
22. My illness has taught me: to not take simple pleasures for granted.
23. Want to know a secret? One thing people say that gets under my skin is: "My relative/friend/acquaintance had that, and they got better just by eating more meat." I wish it was that simple, but for some people (read, me) it's not.
24. But I love it when people: plan things that even tired people can do, and invite me to be a part of it.
25. My favorite motto, scripture, quote that gets me through tough times is: I don't really have anything like this.
26. When someone is diagnosed I’d like to tell them: keep your appointments to monitor your blood. Take your supplements. And be honest with your doctors about how tired you really feel.
27. Something that has surprised me about living with an illness is: that I can't just stuff it to the back of my mind. It seems like it's always there.
28. The nicest thing someone did for me when I wasn’t feeling well was: my boyfriend brought me soup and a pile of magazines one night when I was too tired to go out with him.
29. I’m involved with Invisible Illness Week because: I know there are other people with anemia who don't think it really "counts" as an illness. But it does. Maybe I can help them get the courage to speak up.
30. The fact that you read this list makes me feel: maybe it is okay for me to share that I just do not feel well
NICIAW - PTSD/Depression
This was submitted by Kay:
1. The illnesses I live with are: PTSD and Depression
2. I was diagnosed with it in the year: 2008
3. But I have had symptoms since: 1974
4. The biggest adjustment I’ve had to make is: realizing I have a disability
5. Most people assume: I am normal with a few quirks
6. The hardest part about mornings are: fighting with a huge amount of anxiety
7. My favorite medical TV show is: House
8. A gadget I couldn’t live without is: my coffee maker
9. The hardest part about nights are: sleeplessness and anxiety
10. Each day I take 3 pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: have done massage, reiki, acupuncture, and lots of others
12. If I had to choose between an invisible illness or visible I would choose: visible
13. Regarding working and career: it is very scary to think about it as I am often unable to cope with a regular schedule
14. People would be surprised to know: how hard I have to work to maintain a normal lifestyle
15. The hardest thing to accept about my new reality has been: how much my disability affects every single aspect of my life
16. Something I never thought I could do with my illness that I did was: travel by myself
17. The commercials about my illness: I've never seen one for PTSD
18. Something I really miss doing since I was diagnosed is: living without fear
19. It was really hard to have to give up: living without medications
20. A new hobby I have taken up since my diagnosis is: playing music
21. If I could have one day of feeling normal again I would: I have no idea. I can't imagine what that would be like.
22. My illness has taught me: that I have to take care of myself first
23. Want to know a secret? One thing people say that gets under my skin is: even the tiniest amount of stress
24. But I love it when people: are gentle with one another
25. My favorite motto, scripture, quote that gets me through tough times is: This too shall pass.
26. When someone is diagnosed I’d like to tell them: Hang in there, it can get better.
27. Something that has surprised me about living with an illness is: That others can be so unaware and so cruel sometimes
28. The nicest thing someone did for me when I wasn’t feeling well was: take care of me regardless
29. I’m involved with Invisible Illness Week because: It is so hard to live with an illness that others don't see or know about. Having to try and live a "normal" life when you are really messed up is so difficult and most people have no idea.
30. The fact that you read this list makes me feel: glad to know that you know more about it and maybe will have more compassion for others that you meet with this illness
Monday, September 12, 2011
NICIAW - Endometriosis
My name is Jenn.
The invisible, chronic illness I live with is Endometriosis, stage IV. Endometriosis, for me, is a disease in which tissue similar to the tissue that normally lines a uterus, grows elsewhere. In my case, that means my ovaries, my fallopian tubes, my bladder (inside and outside), my large intestine, my small intestine, all the spaces between pelvic structures, as well as my kidneys, ureters, my liver, spleen, diaphragm, and right lung. Each time my body cycles, those abnormal growths, which cause pain and problems by simply being there, start to bleed (just like having a period). Only they bleed heavily and intensely, and it drains me of all energy and makes me very ill. Not to mention the pain. The bleeding causes inflammatory responses which cause the formation of adhesions and scar tissue, which then creates more places for the endometriosis to grow, and causes pain and problems of its own. I also get cysts within my ovaries and what's left of my tubes, that get very very large and then rupture, causing loss of blood and bodily fluids, abdominal swelling, and sheer agony. The adhesions that formed prior to my last surgery effectively turned my abdominal cavity into a solid mass. There were new arteries that had grown and the adhesions weren't the typical filmy bits of scar tissue, but were thick, meaty tubes of tissue. My last surgery could not be completed in one procedure, and the second half had to be completed two months later.
I was officially diagnosed following a laporoscopy on March 23, 2007.
But I started having symptoms when I was 13 and had my first ruptured ovarian cyst. The ultrasound revealed that the cyst was denser than typical "luteal or hemorrhagic" cysts, and the word "endometriosis came up in conversation. It was dismissed as I was far too young. At the age of 18, I had my appendix removed as well as a large ovarian cyst that I was told was called a "chocolate cyst." At the age of 21, I had to have a biopsy done on my bladder due to the endometriosis that was growing there. And yet, no diagnosis was offered.
The biggest adjustment I’ve had to make is realizing I face life-long pain and knowing that conceiving without medical assistance is no longer possible, and that at the age of 27, I have reached the end of my ability to bear children.
Most people assume that I still have time to have children, but the endometriosis has destroyed so much of my body that I am out of time. If we get an opportunity this year to try, it might work. Otherwise... we are done. I am young, but that doesn't mean I have time. They also assume that Endometrios just means I have painful periods and probably sore ovaries and tubes.
The hardest part about mornings are not knowing if I will be able to stand up when I get out of bed. Will the pain be so severe that I cannot stand up? Will I throw up? If I do, will it be vomit or blood? What about my lung? Am I going to cough up blood? And the adhesions - will one tear free today, causing intense pain and bleeding, possibly even landing me in the hospital?
A gadget I couldn’t live without is my electric blanket. Sometimes, when I'm bleeding internally, I get anemic. And so very, very cold. The electric blanket helps me stay warm, and keeps me from shivering (which hurts even more).
The hardest part about nights are when I am so tired but I am in so much pain that I can hardly make myself breathe, never mind fall asleep.
Each day I take hydrocodone, naproxen, and elmiron pills, and at night I need ambien and ativan to help me sleep. I also take prenatal vitamins, fishoil, and evening of primrose oil. (No comments, please)
Regarding alternative treatments I have tried so many. Supplements, dietary changes, visualization for pain management, faith... all of those things have come into play, and have helped... a little. Also, I have done an experimental run of chemotherapy, which was effective in causing me to loose about 1/2 of my hair and while the disease did not progress, there was no remission. And as soon as the regiment was over, it started growing even faster than before.
If I had to choose between an invisible illness or visible I would choose invisible. I don't like sympathy, I don't like being the center of attention, I don't like "Aw... you look awful." But at the same time... there are days when I feel like I am being shredded from the inside out and someone will say "You look really great" and I will think to myself "NOT.POSSIBLE.GO.AWAY."
Regarding working and career, it has destroyed my career. Do you know people don't seem to hire you when you openly admit that there are days you can't get out of bed, unpredictably. And you have surgery 2-3 times each year, and each time could mean up to 1 month away from work, plus if you get a period you'll be missing at least a week for that, and if you ovulate, you might get a cyst requiring up to two weeks in bed.... they say they are equal opportunity employers, but.... how can anyone expect to be hired after disclosing such information? And I feel like it is the opposite of integrity to withhold it.
People would be surprised to know how much this disease really, really hurts. And how discouraging it can be. But life is still beautiful, still a gift, still something to cherish and live as fully as possible.
The hardest thing to accept about my new reality has been admitting that I really do hurt. I really am in pain, and I really could use your help.
Something I never thought I could do with my illness that I did was... well, we're still working on this one. I want to have a baby. I want to wait, but I can't. If I'm going to do it, it's got to be now. We will see if this happens.
The commercials about my illness... there are commercials about endometriosis? I've never seen any.
Something I really miss doing since I was diagnosed is dreaming about future babies - about finding out that we'd gotten pregnant this month. And I miss being able to be intimate with my husband without pain.
It was really hard to have to give up the idea that our children could be conceived, carried, and birthed 100% naturally.
A new hobby I have taken up since my diagnosis is blogging, actually.
If I could have one day of feeling normal again I would spar until my legs quit working, and then lay on my stomach on the beach and trace designs into the sand. To end the day, I'd be painlessly intimate with the person I love most.
My illness has taught me to take care of myself. To not say "I can" when I can NOT. To ask for help, and to not be ashamed when I need a time out.
Want to know a secret? One thing people say that gets under my skin is "If it's God's will for you to have a baby, you will... at just the right time."
But I love it when people give me a big hug and say "I remember" on December 17th, which is the day our little girl was supposed to have been born back in 2006.
My favorite motto, scripture, quote that gets me through tough times is,
"O Lord, My God, when I in awesome wonder
Consider all the works Thy hands have made
I see the stars, I hear the rolling thunder
I see Thy pow'r throughout the universe displayed...
Then sings my soul, my Savior God to Thee
How great Thou art, how great Thou art!"
When someone is diagnosed I’d like to tell them, it's a tough road. But not a hopeless one. Look for the beauty in your life... because it is still there. And now, it can mean even more than it ever did.
Something that has surprised me about living with an illness is how easy it is to get depressed and self-centered because of it.
The nicest thing someone did for me when I wasn’t feeling well was tell me to lay back down and rest.
I’m involved with Invisible Illness Week because I support others who have "invisible illnesses." I know many people who silently suffer, and I want to give them a chance here to be heard.
The fact that you read this list makes me hope maybe it touched something in you that will help either you or someone you love.
Saturday, September 3, 2011
It's Not Forever.
This life, I mean. Eventually, we leave this earth and enter heaven, or we enter hell. Death isn't scary if you are confident of your eternity.
But for those left here on earth after someone dies... it hurts. It often does not feel temporary. It feels like a giant hole has been ripped through you, a hole that will never heal. It DOES heal, at least some. It takes time, it takes faith, it takes hope, it takes support. But healing happens.
Today, one of the best men I know is dancing in Heaven. His son was there waiting, and his granddaughter, and so many others. He's without pain, without chains, without flaws. And I rejoice for him. I truly do.
And my heart is aching, tears are flowing, for his family. Because good-bye hurts, even though it's not forever. I remember how badly it hurt when my Gramma left my house healthy and happy, and didn't make it home. That's as close as I can come to understanding what my friends, my family, are feeling. Steven Curtis Chapman did a pretty good job of saying what's on my heart tonight.
This is not how it should be
This is not how it could be
This is how it is
Our God is in control
This is not how it will be
When we finally will see
We’ll see with our own eyes
He was always in control
And we’ll sing
Holy Holy Holy is our God
And we will finally really understand what it means
So we’ll sing
Holy Holy Holy is our God
While we’re waiting for that day
This is not where we planned to be
When we started this journey
This is where we are
And Our God is in control
Though this first taste is bitter
There will be sweetness forever
When we finally taste and see
That Our God is in control
And we’ll sing
Holy Holy Holy is our God
And we will finally really understand what it means
So we’ll sing
Holy Holy Holy is our God
While we’re waiting for that day
We’re waiting for that day
We’ll keep on waiting for that day
And we will know
Our God is in control
Holy Holy Holy
Holy Holy Holy
Our God is in control
Holy Holy Holy
Our God is in control
Holy Holy Holy
*This song was written and recorded by Steven Curtis Chapman.