My Journey With:

Hypermobile Ehlers-Danlos syndrome (hEDS) ~ Postural Orthostatic Tachycardia Syndrome (POTS) ~ Focal Impaired Awareness Seizures (Complex Partial Seizures) ~ Fibromyalgia ~ Chronic Myofascial Pain (CMP) ~ Polycystic Ovarian Syndrome (PCOS) ~ TMJ Dysfunction ~ Bipolar Disorder Type I ~ Migraines ~ Obsessive Compulsive Disorder ~ Keratosis Pilaris (KP) ~ Complex-Post-Traumatic Stress Disorder (C-PTSD) ~ Panic Disorder ~ Generalized Anxiety Disorder (GAD) ~ Social Anxiety Disorder (SAD) ~ Non-suicidal Self-Injury (NSSI or SI) ~ Painful Piezogenic Pedal Papules ~ Hashimoto's Thyroiditis (Autoimmune Hypothyroidism) ~ Irritable Bowel Syndrome (IBS) ~ Seasonal Affective Disorder (SAD) ~ Multiple Phobias ~ Chronic Headaches

Friday, September 30, 2011

Lonely

Today I took a nap and cried myself to sleep.  I was so lonely, so tired of hurting, and so tired of being broke that I just couldn't help but cry.  I woke up when DH got home with BBQ chicken chunks from Wal-Mart deli.  They are so very, very good.  I was going to get my hair cut today but I didn't get to.  I did get to go to the dollar shop and get lots of awesome stuff for $1 per item.  I got four baskets to rearrange the bathroom stuff in.  It didn't take me any time, to put the bathroom stuff in the baskets when we got home.  I got two rolls of wrapping paper, it is Elmo and Tinkerbell. I also got two bags of bows.  I've got all these ideas in my head regarding Christmas and what I want to make for my friends, but I don't have the plans written down yet.  Only one friend do I know for sure what I am making her.

Well I guess I'll go now.  DH is getting back home and we are going to watch Netflix.

A Wal-mart Deli

Sunday, September 25, 2011

Need feedback from readers

I just woke up from a nap.  DH is still asleep.  He probably won't wake up before I go back to bed for the night.  I had a dream that I wrapped up something and put it inside a balloon, then floated it over to DH to protect him. I really wonder what was in the balloon.  I'm writing it here so I can tell DH when he wakes up tomorrow morning.  


Today for class I had to interview someone and write a report.  I was fortunate to find two writers to interview via email; one author has been publishing for years and the other writer is just getting started in the business.  I thought that my paper turned out exceptionally well this time.  I also thought it was much more interesting to write about, rather than more about rhetoric.  I have a feeling there will be more papers about rhetoric before I get my degree, though!

I want to do a weekly post that is just for the enjoyment of my readers.  Some things I have in mind:
  • Freebie Friday (I've already done this twice but haven't got any feedback)
  • Blog Loving Sunday (best blogs of the week)
  • Creepy Friday (creepy, yet interesting, stuff from the web)
  • Awareness Monday (cover a different awareness campaign each week)
  • Famous Spoonie Saturday (cover a different famous spoonie each week)
These are some of the ideas I've come up with.  The thing is, until my readers tell me what they want to read I have no idea, and can only guess.  Can you guys please comment on my blog, FB message, FB comment, or tweet me what you are interested in?

Friday, September 23, 2011

Happy Equinox...and I'm in a lot of pain!

Happy Autumn Equinox!
Happy Autumn Equinox everyone!  (Here are some Autumn Equinox traditions around the world.)  We are now out of summer and officially in fall.  The trees haven't changed colors yet, but I'm waiting for them to.  I don't get to go outside much anymore, but I'm going to start forcing myself, no matter how much it hurts.  We'll see how long that lasts.

I am enjoying classes a lot, but my pain levels have been much higher than normal and are greatly interfering with my concentration.  I have been having problems getting my discussion posts and assignments done on time.  I feel like things are going so fast.  I did email my professor and explain what was going on, though.

My right shoulder and both wrists keeps subluxing over and over.  I wish I could somehow glue the damn things in right, but they wouldn't work as joints, then, would they?  It sucks that it's my right shoulder that's the worst, because my hips and back like it best when I lay on my right side.  I can only lay on my back so long, and without two pillows under my knees it hurts my knees to lay on my back.  Keep in mind our mattress is really broken down.  It sinks in the center, so we put a pillow there and sleep on top of that.  I love how doctors and health articles recommend a comfortable bed if you have trouble sleeping or if you are in too much pain to sleep.  A comfortable bed?  I never would have thought of that!  If I had the money for a comfortable bed would I be sleeping on this one?  No, I would not.  That's almost as dumb as when they recommend brushing your teeth before bed to set a routine and sleep better.  Brush my teeth?  Cause, you know, I wasn't already doing that.  Grr.

I'm so achy and we both missed our medicine last night.  The pain in my shoulders is incredible, especially the right shoulder.  I'm blogging now, because I'm not sure I'll be able to blog much longer.  My shoulder might prevent me from doing anything today but reading my textbook and watching The X-Files.  DH is always saying we should switch from Netflix to Amazon Prime or to Hulu, but even with all the stupid changes, I'd much rather keep Netflix.

I'm eating All Bran (the shredded cardboard looking stuff) for breakfast and it is making my jaw hurt so bad.  There really isn't anything else to eat for breakfast, because I sure as hell don't feel like fixing an egg.  We didn't eat supper last night, either, so I'm really hungry.  I just have a jaw ache from hell now and half a bowl of soggy cereal.

I ♥ The X-Files 
 
I went to the rheumatologist and talked about my neck.  I didn't mention Chiari, which I think is a possibility.  Most neurologists have problems with understanding Chiari, there's no need for a rheumy to.  She took X-Rays of my neck and hasn't called back yet.  She mentioned sending me to a neurologist or neurosurgeon if nothing came back on the X-Ray, and we don't expect anything to.  Her office is really incompetent so just because they haven't called doesn't mean she didn't schedule an appointment or something.  I need to call today to find out.  Otherwise some doctor may expect me one day that I have no idea about.  I like her, but like I said, her office is really incompetent.  In between appointments there is no way to get a message to her.  Well, let me rephrase that.  In between appointments I've called a million times since I started seeing her and not once did she return my call or even have her nurse return my call.  I don't know if it is her office, her nurse, her, or a combination of the three.  Either way, I hope that I can get my referral appointment.  I don't want to (and can't) wait the six months until I see her again.

I haven't got much of a response about the Freebie Fridays I did here and here.  Freebie Fridays took about four hours to put together (each Friday) so I am not going to do them if no one wanted them.  If you miss Freebie Fridays let me know and I'll be glad to take them back.  Today I'm going to try Blogs of the Week.  In Blogs of the Week I plan on picking my top ten favorite blog entries of the week.  I'm going to try for a variety of blogs and blog types.  Is there something else you'd like to see instead?

I have a lot to be thankful for.  I'm thankful for my DH, the love of my life.  I'm thankful for our kitties and I love being a Kittymommy..  I'm thankful for toothpaste because I get freaked out when I don't have clean teeth.  I'm thankful for food because going without this winter gave me an appreciation I never had.  I'm thankful for my car still running because even though she leaks oil, she runs great.  "Sexy Bitch" is fifteen years old and doing awesome! ;-)

It helps to remind myself of this when I'm in a lot of pain. 

Thursday, September 15, 2011

Invisible Illness Week: What is it like to receive a diagnosis of mental illness?

The first time I went to a therapist I was 13 and had been severely depressed since I was 10.  Two things happened to bring me into the depression that hit me when I was 10.  First of all, the hormones in my body were starting to go haywire, as I was starting puberty.  Secondly, age 10 is when the bullying I would experience throughout middle, junior, and high school, began.  I also began self-injuring when I was 12, though my doctors still don’t know I did before age 14.

Before my mom took me to my first appointment she explained what depression was.  My dad said to pull myself up by my bootstraps, but I just  couldn't.  (Later, through NAMI, he would learn to understand mental illness just isn't like that.)  I didn’t have many questions about what depression was, it seemed straightforward at the time and I was glad there was a name for what I’d been feeling.  I was mostly nervous to meet my therapist.  How was I supposed to discuss what was going on in my mind to a complete stranger?  When I met Judy, though, I instantly felt comfortable around her.  We had to travel an hour away from our small town to see her each week.  I was glad to miss school.  While I was an ‘A’ student, I was being bullied at school and every second I was gone was more than fine with me. 
After the first three sessions or so, Judy had my mom sit in the waiting room while she talked to me.  I was nervous all over again, but she made me feel at ease when we started talking.  I met Dr. L after seeing Judy a month.  Dr. L diagnosed me with Major Depression and said to watch for bipolar.  We didn’t know what bipolar was, so he might as well said “watch for flying spaghetti monsters,” we still would have just smiled and nodded.  He prescribed an anti-depressant and told me he wanted to see me again in a month. 
So things went on like that for awhile.  I would see Judy once a week, and Dr. L  once a month.  Eventually Judy said she could do no more for me, because she thought I was in a really good place.  I was very confused; because I knew in my head I wasn’t in a good place but had no idea how to tell anyone.  I never spoke up for myself at that time in my life and I was always very terrified (and still am, to a point) of authority figures.  After I talk with an authority figure, doctor, police, lawyer, preist, ect., I get so nervous I often cry either during or afterwards still today.  I continued to stay on the anti-depressant.

We moved to a different town when I was 14.  I hated it.  The move was really hard on me.  The bullying started right away.  The therapist my mom found for me had a huge personality clash with me, and vice versa.  I went through many years of therapists, doctors, wrong diagnosis, and pain, both emotional and physical.  Now skip forward five painful, depressing, years…

I am 19.  I was failing my classes at the university I was going to because I didn’t ever go to class.  Or do homework.  Or study.  Or show up for tests.  I was very, very manic.  My brain was moving so fast, and the rest of the world was going so slow.  It was maddening.  After months of mania I finally went into psychosis.  Maybe it was happening a lot more than I remember, though.  Psychosis is one of the scariest things anyone could imagine going through.  I’m not going to go into a lot of detail about it, because there still is a lot of stigma out there.  Once you hit psychosis you no longer have any grip on reality.  I absolutely cannot describe how scary it is.
During that time I was also self-injuring worse than I ever had in my life.  Let me add that mania causes hypersexuality, which basically means you become very sexual, often having many partners and put yourself at risk because of it.  I didn’t have a lot of sexual partners, though I do have regrets.  One day I was in the university computer lab looking up stuff completely unrelated to school, when I came across the word “bipolar.”  I read about what it was and I was amazed.  This described me.  I was still on my dad’s insurance, so a couple of days later I made an appointment to see a psychiatrist.  I told her what was going on, and I told her I suspected bipolar.  She told me she did, too.  She diagnosed me Bipolar NOS.  NOS means Not Otherwise Specified.  It is a common diagnosis until the doctor figures out which type of bipolar you have.

This is a side note, I feel compelled to include.  Bipolar is spelled like this: "bipolar."  It is not hyphenated, there is no word called bi-polar.  That may have been an old way of spelling it, I don't know, but bipolar has no hyphens!!!  Also, my second pet peeve is the way people abbreviate bipolar.  Bipolar is abbreviated BP, not BPD.  BPD is Borderline Personality Disorder, something very different from bipolar.  So, please write "bipolar" or "BP" when referring to this illness.

How did I feel once I received the diagnosis?  Relieved!  I wasn’t the only one going through all of this and I wasn’t the only one who knew what this felt like.  There are others like me!  Not all people feel this way upon diagnosis, but this is how I felt.  I would eventually get the diagnosis of Bipolar I ultraradian rapid cycling.  I’ll explain that later in another blog.   It is hard some days.  I mean it is really, really hard some days.  I have two failed suicide attempts under my belt, one of them I changed my mind on and the other I must not have taken enough pills because I fortunately am still here.  I know, though, that I’ve already proved to myself that I can make it through a hell of a lot.  Sometimes it’s hard to see I’m strong, but I am.  I know that I am a strong woman who can make it through (almost) everything.  

Wednesday, September 14, 2011

Invisible Illness Week - things you may not know about Bipolar


I just found out that this week is Invisible Illness Week. I have a few invisible illnesses. I am going to cover EDS at my EDS blog, Please Tape Me Back Together. I will be doing fibromyalgia at my fibro blog, Smart Fibro Chick.

I'm a bit frustrated right now, because every time I get my subluxed wrist back in, typing knocks it right back out. So I have to type with one hand or type with one wrist subluxed. So. for now, I'm typing one-handed.

I've got quite a few invisible illnesses, other than EDS and fibromyalgia. My other invisible illnesses include: PCOS (Polycystic Ovarian Syndrome), Chronic pain, Epilepsy, TMJ Dysfunction, Bipolar, Migraines, Bruxism, IBS (Irritable Bowel Syndrome), SAD (Seasonal Affective Disorder), SI (Self-Injury), social anxiety, panic attacks, C-PTSD (Complex-Post-Traumatic Stress Disorder), and Hashimoto's Thyroiditis. I have a lot to pick from (more than I'd like) but I still want can't decide between two of them. I've only recently started talking more about Bipolar. So, without further ado...




1. The illness I live with is: Bipolar I ultraradian rapid cycling (learn more about Bipolar I here and more about rapid cycling here and more about ultraradian rapid cycling here)

2. I was diagnosed with it in the year: 2000 - the year I went on disability

3. But I had symptoms since: age 10

4. The biggest adjustment I’ve had to make is: everything! My goals changed, my performance in school changed, I quit being able to work. I have to deal with people acting like I'm stupid or crazy because I have bipolar, as if they are better than me. It is even more frustrating to be talked down to or treated like I'm stupid when my IQ is much higher than the majority of people's.

5. Most people assume: that people with mental illness are violent. That is far from the truth. In reality, people with mental illness are more likely to be the victims of violence that the perpetrators.

6. The hardest part about mornings are: knowing I have another day ahead of me. Sometimes that is hard, but most of the time that is a good thing.

7. My favorite medical TV show is: Scrubs. I used to watch House until they did the two part episode with House in the mental hospital. It gave me horrible flashbacks and I haven't watched House since.

8. A gadget I couldn’t live without is: the computer. it's my link to the outside world. I can't leave the house often because my pain levels are so high-I'm nearly homebound from EDS and fibro. I get a lot of support online.

9. The hardest part about nights are: the way my mind can suddenly turn dark, my thoughts racing downwards, into a nightmare from hell.

10. Each day I take __ pills & vitamins. (No comments, please) 27

11. Regarding alternative treatments I: Meditate, take fish oil, write. I don't want to mix my meds with anything herbal.

12. If I had to choose between an invisible illness or visible I would choose: Almost anything if I didn't have to deal with mental illness anymore.

13. Regarding working and career: I went on disability in 2000. I cannot work from my bipolar, EDS, C-PTSD, epilepsy, and fibro.

14. People would be surprised to know: That the majority of the most artistic people in history-writers, poets, artists, actors, actresses, etc.-are or were bipolar.

15. The hardest thing to accept about my new reality has been: not being what I could have been. There are a lot of doors that are closed to me because I can't handle the stress that goes with them.

16. Something I never thought I could do with my illness that I did was: go to grad school!

17. The commercials about my illness: make it sound like you pop a pill and your bipolar is okay. What a lie! Bipolar is a constant internal struggle. Medicine and therapy help, but it's always there.

18. Something I really miss doing since I was diagnosed is: I don't know. I've been bipolar since age 10 and was diagnosed at 19. I'm 30 now.

19. It was really hard to have to give up: my dream of a really good school

20. A new hobby I have taken up since my diagnosis is: crocheting helped my hands have something to do in the past when I was manic. I took up writing right at the beginning.

21. If I could have one day of feeling normal again I would: I don't know what normal feels like. :-)

22. My illness has taught me: No one is better than anyone else.

23. Want to know a secret? One thing people say that gets under my skin is: when they joke about someone who is moody and say something alone the lines of "Well isn't she acting bipolar?" Bipolar isn't a joke. Bipolar can destroy almost every life it touches. I think in that way I was fortunate that my bipolar started so early, because I've learned how to handle the ups and downs better that some.

24. But I love it when people: Just say something like "Oh, I heard that Bipolar is pretty rough. Hope tomorrow is a better day for you."

25. My favorite motto, scripture, quote that gets me through tough times is: "Tomorrow's another day, and I'm thirsty anyway, so bring on the rain." ~JoDee Messina

26. When someone is diagnosed I’d like to tell them: I'd like to say that it gets better, but with a lot of people it doesn't. For me it did get better. The best thing you can do is to educate yourself and learn your symptoms of mania, depression, and a mixed state.

27. Something that has surprised me about living with an illness is: How uncomfortable people still are when you mention mental illness

28. The nicest thing someone did for me when I wasn’t feeling well was: Sister Renita visited me once when I was having a very hard time. Her visit meant so much.

29. I’m involved with Invisible Illness Week because: So many of us have invisible illnesses yet no one wants to talk about them, especially mental illness. I think this should change.

30. The fact that you read this list makes me feel: honored! I hope that when you meet someone who is bipolar you realize a few things you didn't know before or if you are bipolar, know that you are not alone!

Throughout the week I will be doing blogs on Bipolar for Invisible Illness Week.

Wednesday, September 7, 2011

Holy Smokes Batman!

I looked at my stats on my blog today.  A lot of the links to my blog are from my very awesome friend's blog, Mama Sick.  I noticed today that since I last checked a lot of the old Google searches that led to my blog aren't there anymore.  I'm glad!  Last time I looked there were four or five Google searches for "hand job" that led to my blog.  This is the first time I've ever said the words "hand job" on my blog.  Why on earth would that lead to my blog?


Some of the other words that people searched for and came to my blog are: sister, the l word, female genital mutilation, thunder and lightning, bullying, the l-word, female genital diagram, mayo clinic lupus symptoms, bullied girl, bullying emotions.

Of my all-time stats "referring URLs" Danielle's blog Ehlers-Danlos Syndrome-Deal With It has sent 222 people my way.  I love Danielle's blog.  Mama Sick has sent 39, and twitter has sent 206 people my way.  (Yay twitter!)  One of my favorite blogs A Day in the Life of a Freg, sent 38 people my way.  Feminste has sent 26 my way.  On the all-time "referring sites," Google has sent 1, 074 people my way.  On referring sites Mama Sick has sent 99 people my way.  I'm not sure what the difference is between referring URLs and referring sites.  Either way, thanks Mama Sick!  Facebook sent 209 and Networked Blogs sent 194.  Ehlers-Danlos Syndrome-Deal With It on referring sites has sent 260 people my way.  Thank you Danielle!

I think networking is really awesome.  I recently put a blog list on my blog to both drive other readers to blogs that are really worth it, and to help those bloggers of those awesome blogs get more traffic.  So go check out my blog list.  You'll find some awesome blogs with a variety of topics.  Happy reading!

Saturday, September 3, 2011

Mixed state

My thoughts have been racing the past week, and today I could no longer ignore or deny that I'm cycling again and in the throes of a mixed state.  My mind is racing, yet dead at the same time.  I've had muscle twitches and panic attacks all day that just recently calmed down during a long talk with my bestie Vanessa.  I've always been a loner, and I tend to have a few very close friends rather than many friends.  My friendship with her came along at just the right point in my life when I really needed someone.  She's been there for me and I hope that I've been as good of friend to her as she has to me.  There are only a few people in this world I really trust and she is one of them.  I think only another zebra can really understand another zebra (person with a rare disease, meaning EDS).

I've completed my first week of grad school but my financial aid is messed up.  I have to get it straightened out by Tuesday.  I found out it was messed up on Friday afternoon and didn't have time to get it fixed.  So far I've got my assignments in, I've passed the introduction to the university's online program, Moodle, and I've got my book highlighted and marked up.  I couldn't read any today.  My brain is just going too fast and is too dull at the same time.  I can't concentrate.  Speaking of concentrate...why was the blond staring at the glass of orange juice?  It said concentrate!  Okay, so I learned that in fourth grade and it isn't exactly new, but I still break a smile when I hear it.  It was the first joke I remembered enough of to retell that wasn't some kid's knock knock joke.  I felt so important when I told that joke in front of all the grown-ups.  :-)

You know what gets on my nerves?  It irritates me when people act like just because I have a mental illness, I am stupid.  Mental illness and IQ are two different things.  I've also had the opposite happen, people act like I couldn't possible have problems if I'm smart.  My IQ is well above-average, but that doesn't mean I don't have mental illness.  Many bipolar people throughout history have been artists, writers, leaders, and everything else known to (wo)man.  Some famous people with bipolar are: Jim Carey, Patty Duke, Carrie Fischer, Ned Beatty, Rosemary Clooney, Vivien Leigh, Jean-Claude Van Damme, Tracy Ullman, Tim Burton, Ludwig von Beethoven, Vincent Van Gogh, Ted Turner, Buzz Aldrin, Jimi Hendrix, Jeannie C. Riley, Sylvia Plath (it is also theorized she had Borderline Personality Disorder), Anne Sexton, Robert Lowell, Darryl Strawberry, Patricia Cornwell, Edgar Allan Poe, Mark Twain, Virginia Woolf.  There is a book by Kay Redfield Jamison called Touched With Fire: Manic-Depressive Illness and the Artistic Temperament that I want to read but haven't yet.

Just a side note I thought I'd add on semantics; bipolar and manic depression are the same thing.  Manic depression is the old name for it, and bipolar is the name used now, and is also the name is the DSM.  I prefer the old name, manic depression, because I feel it better conveys the seriousness of the illness.  Also, bipolar is abbreviated BP, not BPD.  BPD is the abbreviation of Borderline Personality Disorder.  For my final point, bipolar is not hyphenated.  It is not spelled "bi-polar."  It is spelled "bipolar."

Anyway, I thought I'd end with a self-portrait I did a few years ago.  It's called "Manic Depression."

"Manic Depression" by Amy

Thursday, September 1, 2011

A long day ahead

Blogger changed their interface quite a bit.  I switched to it, then switched back.  The publish button and preview buttons don't work on the new interface.  It obviously still has quite a few bugs to work out!  It's much harder to find things and I really don't care much for it.  I imagine there will be a lot of changes before they force everyone to change.  I really like the old interface because I've been using it so long I know where every single thing is.  When I do eventually switch and stay I will have to learn a new interface.  I know I can, I just get frustrated easily.  Patience is not one of my virtues!

I didn't do all of my schedule I had written yesterday, but I did get a lot done.  I also got my textbook in the mail.  Yay!  I was really worried because Chapter 1 reading is due today.  I've got a lot of reading/studying/writing to do today.

We've got a lot to do today in town, too.  We have to get my car's tags renewed, go to Wal-Mart, and pick up some papers at the courthouse.  Discover card is trying to garnish my wages, even though I've told them 1,043,893,064,293,784,208,001  times I don't have a job and am disabled.  They know they can't garnish disability money, so I'm not sure what the deal is.  They told the judge (when they sued me-this was in the summary judgment) that I never once contacted them to talk about payment plans.  I wrote them, I called them, Jim called them, I took their calls, and Jim took their calls.  Now how is that not contacting them?  One guy even made me cry because he made me feel like shit for not having money.  I told him I pay rent and electricity first and he said I should put Discover card before my electricity bill.  I started crying and cried for ten minutes before we hung up.  So, anyway...I'd had the Discover card account since 1999, I had trouble for one year, because we were supporting other families with our money, and they took me to court.  If you are looking for a credit card, remember, Discover card is made up of assholes.

So, we've got a big day ahead of us.  A few days ago I woke up like normal and then pain hit hard and suddenly and didn't leave that day.  I really hope today is a good day pain-wise.

Well, I've tried out Google+, and I must admit, it sucks ass.  I can't figure out how to meet new people on it, or to really do anything at all, other than fill in a profile, look at a status message feed, and +1 things online.  Doesn't Facebook do all of that and a lot more?  I can't understand what the appeal of Google+ is. There must be something I am missing.  I know they have games, but I have all the games I want to play on Facebook already.

I wish I wasn't so sleepy.  Things would be easier if I wasn't.  After visiting sponsored tweets, checking my facebook, twitter, and email I will start on my day.  That shouldn't take long and hopefully after that I will be packing my little head full of knowledge and writing until I have stubby index fingers.  (If you've seen Evil Roy Slade with John Astin you will get the reference.)  Evil Roy Slade is one of my favorite movies of all time.  It's a made for TV movie from 1972 starring John Astin, Henry Gibson, Mickey Rooney, Dom DeLuise, and Milton Berle.  It's just like one of the most awesome movies ever made!






Anyway, I will leave you with the awesomeness of Evil Roy Slade.  Have a nice day!

LinkWithin

Related Posts Plugin for WordPress, Blogger...