My Journey With:

Hypermobile Ehlers-Danlos syndrome (hEDS) ~ Postural Orthostatic Tachycardia Syndrome (POTS) ~ Focal Impaired Awareness (Complex Partial) Seizures ~ Fibromyalgia ~ Chronic Myofascial Pain (CMP) ~ Polycystic Ovarian Syndrome (PCOS) ~ TMJ Dysfunction ~ Bipolar Disorder Type I Rapid Cycling With Psychotic Features ~ Migraines ~ Gastroesophageal Reflux Disease (GERD) ~ Obsessive Compulsive Disorder (OCD) ~ Keratosis Pilaris (KP) ~ Complex-Post-Traumatic Stress Disorder (C-PTSD) ~ Panic Disorder ~ Generalized Anxiety Disorder (GAD) ~ Social Anxiety Disorder (SAD) ~ Nonsuicidal Self-Injury (Self-Harm) ~ Piezogenic Pedal Papules ~ Hashimoto's Thyroiditis ~ Irritable Bowel Syndrome (IBS) ~ Seasonal Affective Disorder (SAD) ~ Specific Phobias ~ Chronic Daily Headache ~ High Cholesterol

Saturday, June 30, 2012


Something is bothering me.  I read the blog of an ex-pat woman living in Saudi Arabia on a regular basis.  However, her attitude that she is better than Saudi women is really getting old.  She also has no respect for the laws there, and refuses to cover her hair.  Do I agree with the Saudi laws?  No.  But that doesn't mean you can just do what you want and not follow the law, then get irate if the religious police stop you.  When you are in a foreign country you have to follow their laws, whether you agree with them or not.  Also, because you have a college education that doesn't make you better than Saudis that don't.  When people try and tell her this, she just makes fun of them in her blog entries.  I swear, I have no idea why I keep reading it.

Thursday, June 28, 2012

"DIfferently-abled?" Shut Up. Just. Shut. Up.

Spoonie. Disabled. Crippled. Gimp. Handicapped. Out of Commission. Burden. Deffective. Bedridden. Broken. Damaged. Enfeebled. Housebound. Lame. Laid up.

 Some of these words I call myself, but if I were called some of these words I would offended to no end, not to mention angry. It angers me just as much, though, when someone corrects me and tells me I'm not "disabled," I'm "differently-abled." I haven't had someone tell me I'm not "handicapped," but "handi-capable," yet, but it will piss me off just as much. I probably haven't heard it because I don't refer to myself as handicapped. I do, however, call myself a spoonie and disabled. Those words don't offend me, but when someone who has no disabilities thinks they'll somehow change my life by using a stupid made up word, well, that pisses me off. When someone who isn't disabled corrects me, I feel belittled, annoyed, and angry. If you're not living my life, and aren't even disabled at all, you don't have a right to correct me. Yes, I have abilities that I've always had, such as writing, crafts, and scrapbooking. That has nothing to do with being physically disabled, though, or disabled with mental illness, as most of us have some ability, whether it's a physical, mental, or spiritual one. It's like that person thinks just because I'm disabled my life must suck so they need to give me a bit of hope, because, of course, it is their duty as an able-bodied person. My life doesn't suck, and I don't want anyone either feeling sorry for me or thinking that they have to rescue me from my sucky life by giving me advice. Maybe this doesn't bother some people, but it does me. I know people don't realize they aren't being helpful, but perhaps they need to stop, think, and put themselves in the shoes of a disabled person's. I've thought before about saying "Ooo, wow, I never thought of it that way! You just changed my life!" I would say this sarcastically, of course. I have a feeling, though, that most people would totally miss the sarcasm and say "You're welcome. Glad I could change your life [with one made up word]!"

Am I the only one annoyed by this?

Tuesday, June 26, 2012

Togy stitch

I finished this in December of 2010.  I had it sitting around forever half finished, when I finally said to heck with it, and finished it.  It was hanging on the fridge but it kept falling down and I didn't want it to get ruined so I put it in a drawer.  I got it because it looks like my baby Togy, who I had to leave behind at my parents' house, where he is very happy.
Mini Togy

The real Togy

Sunday, June 24, 2012

Sometimes it really gets to me

I am in so much freaking pain today.  This is my second day without Celebrex because I don't have the money to pick it up at the pharmacy, even though my co-pay is only a $1.50.  We have two sets of sheets we use, with one set of really old, don't fit right, lowest thread count possible, super thin, sheets, that are also see through, for "backup."  One of our nice sets of sheets now has a big rip down the middle.  So now I have to figure out whether I want to patch the sheet, or try to sew it.  I don't know how to sew, really, and don't have any sewing thread.  I think I do have a sewing needle somewhere, though.  I thought since the edges of the rip are frayed I might just do a satin stitch, which is an embroidery stitch I can do.  I think it would be better than patching it, though if my "sewing skills" were able to fix it.  Of course, if they aren't able to fix it, I can always patch it then.  I know we have an iron somewhere in the garage, or at least I think we do.  I think we don't have our ironing board anymore, but we could always use the part of the table that isn't broken.  The good news is that we have plenty of food in our shelves and fridge.

I obviously won't be able to get all these things, but my list of things I'd like to get next month are: collars for the cats, flea drops for the cats (we will definitely get those), books (I doubt I'll get that), an EDS ID card, business card paper to make a dysautonomia/POTS info card for my wallet (I doubt I'll get that one, either), new wrist braces, a walker pouch (another that I doubt I'll be able to get), soft knee braces for support (no way I'll be able to get that), a wrist blood pressure monitor (I really need that, but it's unlikely I will be able to get it), and extra links and a new clasp for my medical ID bracelet (that one is very important).  Sometimes I get so tied of living in poverty.  I'm usually not a jealous person, but I was on tumblr today and saw a girl complain about only having a $300 clothes budget for next month, and I had to force myself not to write a snarky comment about how nice it would be to have that much money.  I'm getting bitter, and that isn't the person I want to be.  I want to a positive person.  I am thankful for things that seem little to others that are a big deal to food and toilet paper.  Do you know how it feels to know you have a ask a charity for toilet paper because you don't have any?  And then they give you only one roll, but it's another week until we get paid?  I don't want to be a bitter person.  I never saw myself at 31 years old on a walker, unable to drive, unable to take a shower alone in the house because of fall risks, not knowing if I can eat day to day, patching sheets, no new shoes in 4 years, no new clothes in 2 years, having an 18 year old car, homebound, not a mommy yet, ruined credit that only a few years ago was perfect, afraid to answer the phone because of bill collectors, and with more illnesses than I can remember in two minutes.

Sometimes being disabled and living in poverty just really get to me, more so than other days.  This is one of those days.

Front of my medical alert says:
AMY ██████

Back of my medical alert says:
DOB ██████

Thursday, June 21, 2012

Embroidery for MIL

I made this in December of 2010 for my MIL (mother-in-law), who passed away less than six months after giving this to her.  She was a very religious woman, so I used a Christian embroidery kit my mother gave me years ago.  I was very happy that she liked it.  I gave it to her in the hospital, which was the last time DH and I saw his mother.

I finished it up and it took it out of the hoop and put it in the frame.  This is me holding the finished product.

I put the frame down on the desk and stepped back to take another picture.

Tuesday, June 19, 2012

Reoccurring nightmares and interesting blogs

I keep having these nightmares that my sister and I are being held captive.  I know what the nightmares mean, but it doesn't mean they are stopping.  I dream that we are held captive.  I'm starting to have a panic attack just writing about the nightmares.

...Okay, panic attack over.  I have a lot to do today, I want to do research and write an entry on another blog I have, and I want to write back my pen pals.  I owe a lot of them letters.  I also want to crochet, but I think adding that to my "to do" list would be a bit delusional, considering my hands are already in a lot of pain.  I really want to talk to my best friend today online, and I can't do that if my hands hurt too bad to type.  Unfortunately, I've had a lot of days like that in the last few weeks.  That's the main reason I've been falling so far behind on my blogs, and my letters to my pen pals.  It hurts really bad to crochet, but sometimes I can stand the pain--just not often.

Ehlers-Danlos Syndrome hurts my hands! (This really is my hand, and it's very swollen.)

I've got a lot of pain in my hips today, and aspirin and my regular meds are just not cutting it. The pain is still pretty severe, but I can walk, though it hurts like hell. As I'm fond of saying...pain sucks big green donkey balls!

I wanted to put together a hodge podge mix of blog entries I've enjoyed reading this week. Some of them are from spoonies, some of them aren't. Some of them were written this week, some weren't.

Felicia Fibro: IMAK Arthritis Gloves & Pill Bottle Review

Enjoy reading!

Sunday, June 17, 2012

Bipolar crocheter

DH (dear husband) and I both woke up last night and this morning bathed in sweat.  I've napped today and woke up like that again.  Strangely enough, it's kinda chilly in here and the air conditioner has been on, since it's so hot outside.
Bipolar Disorder: Peace, Love, Cure

My bipolar has been giving me crap lately.  I've been rapid cycling for days, and I hate it.  Rapid cycling is defined here, and in layman's terms here.  I think sometimes people with depression might think that it's much more fun to be bipolar than just depressed.  I can only answer for my situation, but my depressions are severe, my manics take me from euphoria to psychosis (I cannot stress enough how scary it is), and my "normal" is a low to medium grade depression.  People with bipolar have a higher suicide rater than people with just depression.  I am not trying to say that people with depression have it easy, or that people with depression can't have severe depression, they most certainly can, I'm just saying while it sucks to have depression, it also sucks to have bipolar.  I brought up this topic because I used to be very involved in a mental illness organization as a teacher, group leader, speaker, and office administrator.  I was a volunteer there, and I am so glad I had those years of experience.  I just remember sometimes the people I knew at that organization would tell me I'm lucky to have bipolar, and it angered me, saddened me, embarrassed me, and showed me that people obviously didn't know how much bipolar sucks.  Fortunately, since I left that organization (because I moved away) I haven't ran into anyone who has said that to me.  Again, I am not trying to say people with just depression have it easy, I'm just saying that those people had no freakin' idea how much bipolar SUCKS, it isn't fun.  

I lost my freakin' wrist braces somewhere and can't find them.  I found two old ones, but they are both for the left hand.  DH and I have looked everywhere we can think of, but still, no wrist braces.  So, it's hard for me to talk online or to type much.  

Earlier this month, I ordered the ergonomic crochet hooks I'd been wanting from Amazon.  They were a birthday present.  They are Provo Craft Crochet Tools.

Provo Craft Crochet Tools I Medium Crochet Hook

The two pieces of plastic weren't lined up correctly in the trigger handle, and the way you had to hold it is very uncomfortable.  It is also cheaply made.  I'm going to try one from this list next.

I've been trying to catch up on all the many blogs I'm behind on, but it's a lot of reading.  I am subscribed to a lot of blogs, though a good many of them don't have regular entries.  Well, I do believe I'm going to try and get caught up on my blog reading, and do some entries in my other blogs.  I hope everyone is enjoying the warm weather, though I know us POTSies probably aren't.  I'm not, anyway.  I am so thankful for air conditioning!

Thursday, June 14, 2012

Short entry

Yesterday was my birthday, I turned 31.  I had a high pain day, but I did have an hour, after a nap, of lesser pain, which was really nice.  Right now I'm trying not to throw up, I'm so very sick to my stomach.  I think I have a stomach flu starting to take effect.  I feel bad.  I've been in bed all day long, most of the day pretty out of it.  I took my temperature once, but it was my normal.  My normal temp is always lower than the average, since I had such a high fever with scarlet fever as a child.  I am the only person I know under 70 who's had scarlet fever.  Sorry this is such a short entry, I wanted to get something out, but I feel too sick to type much.

Friday, June 1, 2012

Happy 1st Birthday Katya!

Happy 1st Birthday Katya!

October 2011
November 2011

December 2011

January 2012
February 2012

March 2012

April 2012

May 2012

Happy First Birthday Katya!
June 1st, 2012


My World for the blog "Will There Ever be Some Relief?"


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