NICIAW - Depression, PTSD, Arthritis, Ligament Damage

Ruth writes:

1. The illness I live with is: Depression, PTSD, arthritis and serious ankle ligament damage/foot bone spur from an old injury.

2. I was diagnosed with it in the year: 1995 onward's, various things diagnosed over the years. Injury happened in 1990, or 1991, can't quite remember.

3. But I had symptoms since: With the depression, looking back I realize I've suffered for as long as I can remember.

4. The biggest adjustment I’ve had to make is: Not being able to hold down a job.

5. Most people assume: There is nothing wrong as none are immediately visible, although I use crutches a lot more these days.

6. The hardest part about mornings are: Getting up and getting motivated, especially if I'm in a lot of physical pain, it does have a knock on affect.

7. My favorite medical TV show is: n/a.

8. A gadget I couldn’t live without is: My computer, linked to the internet, as they provides me with a way of connecting with people. Also, reading and music, so my Kindle and iPod.

9. The hardest part about nights are: Dealing with the insomnia, nightmares and pain control.

10. Each day I take __ pills & vitamins. (No comments, please) - Two types of anti depressants, pain killers, one of two types depending on the level of pain. Sometime I also require sleeping tablets.

11. Regarding alternative treatments I: Have found Reiki useful in helping me relax.

12. If I had to choose between an invisible illness or visible I would choose: visible!

13. Regarding working and career: I had to give up work back in 1995, and again in 2006. I really miss it, and wish I could do more.

14. People would be surprised to know: How much physical and emotional pain I am in every day as I have got used to hiding it very well.

15. The hardest thing to accept about my new reality has been: Not being able to work.

16. Something I never thought I could do with my illness that I did was: Have to courage to try and spread awareness by doing things like filling in this form.

17. The commercials about my illness: Can't say I've really seen any.

18. Something I really miss doing since I was diagnosed is: Riding horses.

19. It was really hard to have to give up: Work and riding horses, and I had worked with animals professionally ..

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: Treasure every moment.

22. My illness has taught me: To be patient with myself.

23. Want to know a secret? One thing people say that gets under my skin is: 'It doesn't look/seem that bad.' Or a Doctor that once said. 'It could have been worse.' ... I think the only thing that is worse than being subjected to child abuse would have been if they had killed me!

24. But I love it when people: Say something spontaneously that make me realize I'm not 'lazy' and that I am justified in feeling like I do. Especially when it comes from somebody I have a huge amount of respect for. Happened last year, and whenever I need to remind myself that I am allowed to feel like this I remember what they said. was a very affirming moment.

25. My favorite motto, scripture, quote that gets me through tough times is: A quote from the After Silence store. 'You thought you'd destroy me, but you only made me stronger.'

26. When someone is diagnosed I’d like to tell them: It does get easier to live with what you are going through, it takes time, be kind to yourself in the meantime.

27. Something that has surprised me about living with an illness is: How much people can wrongly assume what you are capable of.

28. The nicest thing someone did for me when I wasn’t feeling well was: Provided me with a safe haven.

29. I’m involved with Invisible Illness Week because: It's time the barriers of ignorance were pulled down, and the only way to do that is to debunk the myths by speaking up about our experiences so people don't have the grounds to assume.

30. The fact that you read this list makes me feel: Hopeful that slowly people are recognizing that illness covers more than they perhaps realized before

NICIAW - Fibromyalgia, Meniere's Disease

Izebell writes:

1. The illness I live with is:
PTSD, Fibromyalgia, Meniere's Disease, Tinnitus, Joint Hypermobility, Carpal Tunnel, Arm/hand nerve impingement, DDNOS, chondromalacia

2. I was diagnosed with it in the year:
Meniere's, tinnitus - 1995
Fibromyalgia - 2000
PTSD - 2005, 2006, 2011 (different docs)
the rest 2012
Chondromalacia - 1979

3. But I had symptoms since:
Fibro - Not sure
PTSD - 1970
Meniere's/tinnitus - 1995
Joint stuff - 1974
Carpal tunnel/nerve issues - 2006
DDNOS - 1976 (not really sure)
Chondromalacia - 1973

4. The biggest adjustment I’ve had to make is:
Giving up the things I enjoy doing and making sure I have a few days of rest built in after a busy day.

5. Most people assume:
That I am either just fine or complain a lot

6. The hardest part about mornings are:
Waking still feeling exhausted

7. My favorite medical TV show is:
Untold Stories of the ER

8. A gadget I couldn’t live without is:
My braces

9. The hardest part about nights are:
Not sleeping and being too exhausted to interact with My Beloved. There's nothing left for him.

10. Each day I take __ pills & vitamins. (No comments, please)
8 RX and 6 vitamins

11. Regarding alternative treatments I:
I have tried herbs, chiropractic, massage therapy, acupuncture, diet

12. If I had to choose between an invisible illness or visible I would choose:
Visible as people can then see something wrong and are more willing to help out

13. Regarding working and career:
I am probably going to have to stop working soon as my hands can't do it any more. Because of the fibro, it takes about 2-3 times longer for me to heal from surgery and I am having my right hand/arm fixed later this year.

14. People would be surprised to know:
How many illnesses I have.

15. The hardest thing to accept about my new reality has been:
The loss of social interaction due to the inability to participate in my favorite hobby

16. Something I never thought I could do with my illness that I did was:
Go on almost all rides at Disneyland - Tower of Terror is the best! (the virtual reality ones are out, however)

17. The commercials about my illness:
Don't exist

18. Something I really miss doing since I was diagnosed is:
Bowling but my body just can't do it any more

19. It was really hard to have to give up:
Quilting as it kept me sane and brought me joy.

20. A new hobby I have taken up since my diagnosis is:
Haven't found it yet as most involve my hands

21. If I could have one day of feeling normal again I would:
Hike a local mountain - 4 miles up and I did it once

22. My illness has taught me:
That God is in control and my strength and support come from Him. All others will fail me.

23. Want to know a secret? One thing people say that gets under my skin is:
You just need to exercise

24. But I love it when people:
Say "You don't look it!" when I tell them my age. I also like hearing "I understand".

25. My favorite motto, scripture, quote that gets me through tough times is:
I can do all things through Christ who gives me strength." Phil. 4:13 My life verse

26. When someone is diagnosed I’d like to tell them:
It can get better and you won't always feel like this.

27. Something that has surprised me about living with an illness is:
That pain is just a part of life and it's usually in the background except right now.

28. The nicest thing someone did for me when I wasn’t feeling well was:
Bring us meals

29. I’m involved with Invisible Illness Week because:
Millions of people suffer and the public needs to be educated so they will stop saying stupid stuff.

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

NICIAW - Bipolar II and PTSD

Emily writes:

1. The illness I live with is: Bipolar II and PTSD

2. I was diagnosed with it in the year: 2002 (and PTSD again dx in 2006 after knee injury)

3. But I had symptoms since: 1985ish

4. The biggest adjustment I’ve had to make is: Unsure of how to respond to this

5. Most people assume: I'm normal, until they see it on paper, then assume I'm insane and should be locked away

6. The hardest part about mornings are: Waking up

7. My favorite medical TV show is: (used to be) ER

8. A gadget I couldn’t live without is: vibrator (yep--no men in this girl's life! ha ha) and Android phone

9. The hardest part about nights are: shutting off my mind to go to sleep

10. Each day I take __ pills & vitamins. (No comments, please) 4 RX and 2 OTC

11. Regarding alternative treatments I: have VERY recently started to do chiropractic and massage therapy (big hurdle letting people touch me!!)

12. If I had to choose between an invisible illness or visible I would choose: Visible: The general public seems to be okay with broken limbs, but not broken hearts or minds.

13. Regarding working and career: I get through

14. People would be surprised to know: They know pretty much all of it -- I have AMAZING coworkers and a great support system Monday-Friday!

15. The hardest thing to accept about my new reality has been: It's not new, been dealing for quite a while

16. Something I never thought I could do with my illness that I did was: go into public without panic attacks

17. The commercials about my illness: ARE there commercials!?

18. Something I really miss doing since I was diagnosed is: n/a

19. It was really hard to have to give up: NOT trusting people (I'm working on it!)

20. A new hobby I have taken up since my diagnosis is: being more social... not so much a "hobby" per say, but trying to get out and do more things in general

21. If I could have one day of feeling normal again I would: Pee my pants with excitement

22. My illness has taught me: how to be stronger and that I am more of a fighter than I ever thought I was

23. Want to know a secret? One thing people say that gets under my skin is: oh there are too many to list!

24. But I love it when people: Go out of their way to help others, big or small

25. My favorite motto, scripture, quote that gets me through tough times is: “I believe that everything happens for a reason. People change so that you can learn to let go, things go wrong so that you appreciate them when they're right, you believe lies so you eventually learn to trust no one but yourself, and sometimes good things fall apart so better things can fall together.” ~Marilyn Monroe

26. When someone is diagnosed I’d like to tell them: Never been in that position

27. Something that has surprised me about living with an illness is: how close-minded SO many people are

28. The nicest thing someone did for me when I wasn’t feeling well was: my sister got me groceries so I didn't have to go out and deal with the world

29. I'm involved with Invisible Illness Week because: Jenn asked me to be

30. The fact that you read this list makes me feel: a little less alone

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 - 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 - 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.

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

Last Day?

This could very well be my last day here in the hospital. That would be fantastic, you know. I'm not sure what will happen tomorrow, though. I may go home to resume all activity, or maybe I'll go home for more bed rest. If it's the bed rest thing, I'm going to stay in the same place I spent my high school years, simply because everything is on one floor. Or maybe I'll stay here on total bed rest still. Or stay, but with "bathroom privileges." Really no idea.

Today has been a rough one as far as feeling just... crummy. I ache everywhere - all my muscles and joints. My head is pounding, stomach rolling. Foot has gone completely numb to the touch, but still feels constant pins and needles. Donor site is super sore - had to rip the bandage away so it isn't getting brushed, and even then... my skin twitches and it almost makes me yelp.

Yes, I used the word yelp.

Have been being a jerk today as far as company goes - haven't wanted any. A friend who works here stopped in, and it was good to see her, but... over all, I want to be alone. Completely left to my own devices and quiet and peace.

I have to figure out supper, and to be honest... I think I just want oatmeal and strawberries and yogurt and bacon. Not a typical "supper" but it's about the only thing that doesn't turn my stomach at the mere thought of eating it.

There is also that hot fudge and marshmallow sundae down the hall in the freezer for me. But that's not "healing food," it's just yummy.

The nurse just came in and did a "mental health assessment." She doesn't seem to know what to do with the answers I gave her (honest answers). Is it really that unusual for a patient to come in with PTSD and also be in the middle of some serious depression?? Here's to hoping she doesn't page some random on-call person for me to talk to. Blech - who really wants a stranger to talk to, ya know?

Prayer requests today - I don't want to stay here any longer than absolutely necessary. I don't want these aches and sweats and chills and new pain and new numbness to mean anything actually bad. That this is just a normal healing progression. Otherwise, I'll check back in tomorrow and let you all know the verdict - home, here, what can I do, all that jazz.

Leap of Faith. Again.

A year and a half ago, I said here that I was going to be taking a leap of faith. Back then, I was terrified. Afraid it would hurt, be uncomfortable. Drag me down. Be difficult. Challenge me more than I wanted. Be too much to handle. And tonight, if I am going to be completely honest, all of those things I was so afraid of have happened.

I've wrestled with what to post here for so long... and instead of doing anything with it, I've stared at a blank text box wondering what to write.

Tonight, I am taking a leap of faith. I have been talking a lot lately (in "real life") about how much I admire those who are totally transparent. The people who let their lives - faults and all - shine for Him. Those who are raw and honest, and want God glorified more than they want to protect their own reputation.

So instead of just talking about those people, I am going to try it myself. Take a radical leap of faith, so to speak. Do what I believe God would have me do - and be real. Be raw. Be honest.

Truth is folks, I've been so close to falling completely apart. I've been struggling with the symptoms and manifestations of Post Traumatic Stress Disorder. The nightmares, the flashbacks, the constant "hyper vigilance." The inability to fall asleep, and after I finally do, waking up easily and then being unable to go back to sleep. Unexplainable rage. Irrational fear. Inappropriately intense emotion some days, and some days no emotion at all. And that is just the tip of the ice burg. I am no longer employed by my previous (amazing) employer, as I was hospitalized for quite some time.

Just admitting that is so hard to do. Fear is telling me that "my readers" will judge me. That some will say I'm making it up. That there will be nay-sayers and put-downs. I can't really share details pertaining to the cause of this disorder, other than to say it stems from multiple childhood events. This diagnosis is new, but the problem has been persistent for the last twenty years. I'm twenty six. Do the math - I can't remember ever being any different than I am now. The symptoms have been mild, and I have been able to hide them, up until last year. And things didn't get out of control until this past December.

I am not crazy, by the way.

Since coming home, I'm almost never home. I have Dialectical Behavioral Therapy (DBT) for two hours every week. I also meet with a private therapist once a week, who is taking a two pronged approach as he supports the DBT as well as works in the realm of Cognitive Behavioral Therapy (CBT). I underwent EMDR for nearly five months. It helped immensely in some areas, and in other areas, it stirred up things that probably should have been left alone. Once a week I see a different therapist to address one very specific issue. I can't really share that here - legally, not allowed. I also work with a psychiatrist, who is helping to figure out if we can use medication to control some of the issues.

Lest this all seem gloom-and-doom... I do have some good news. First, a new heart med (new to me, not new to the world) has been working really well to control my heart rate. Second, one of the meds from the psychiatrist has enabled me to get an average of 4.5 - 5 hours of sleep every night. I was previously getting between 1 and 3. No exaggeration. I am quite sure that the lack of sleep contributed very much to the major increase in symptoms. Also, I have been blessed with a husband who stands by me through all of this - even when he has no idea what to do. My church has been unspeakably helpful. Always there. Always helping. Always good. My dad, my step mom, friends... so many people have shown themselves so faithful. God has provided financially as well. He just never stops blessing us.

I have gotten back into Martial Arts. I never stopped being a Martial Artist, but I had been skipping class for years. And now, my husband happens to be hooked as well. Which is of course fantastic. :) It's great for the soul (mind and emotions) and helps the body as well. One of my best friends is the head instructor there. It has been such an amazing gift to spend more time with him. I first met him almost 15 years ago. He has been one of my closest friends for 14 of those years. It is amazing how much one single person can do for another, by merely existing. But that's a whole other post.

Now... if you have read all of this, I expect you to have questions. Please feel free to use the "E-mail Me" button over on the left-hand side of the screen. I will do my best to respond to every question, even if that means letting you know that I can't give you an answer.