My Journey With

Ehlers-Danlos Syndrome Hypermobility Type (H-EDS) ~ Chronic Pain ~ Postural Orthostatic Tachycardia Syndrome (POTS) ~ Epilepsy ~ Fibromyalgia ~ Chronic Myofascial Pain (CMP) ~ Painful Piezogenic Pedal Papules ~ Polycystic Ovarian Syndrome (PCOS) ~ TMJ Dysfunction ~ Bipolar type I ~ Migraines ~ Keratosis Pilaris (KP) ~ Bruxism ~ Irritable Bowel Syndrome (IBS) ~ Complex--Post-Traumatic Stress Disorder (C-PTSD) ~ Non-suicidal Self-Injury (SI) ~ Hashimoto's Disease (Autoimmune Hypothyroid) ~ Seasonal Affective Disorder (SAD) ~ Social Anxiety ~ Panic Attacks

Friday, March 22, 2013

Feelings hurt, in pain, no gas, & no money for meds

Where do I begin with this blog entry?  I guess I'll start with why my feelings are hurt.  I had a good friend with very good insurance insist that I should feel sorry for her because her co-pays are high at the pharmacy. The thing is, her parents pay her co-pays, and they always have enough money to do so.  She pointed out my low co-pays and acted like I was really lucky, when often a $1 or $3 co-pay is all my money or is more money than I have.  I have to pay my co-pays myself, and those "tiny" co-pays are a lot to me.  She knows all of this, so that's why it hurt my feelings so bad.  When she said it I actually cried, and I cried later that night, too.

Which brings me to another topic.  I'm out of one of my main medications, and even though the co-pay is under $3 I can't afford it, so that means I can't get it.  People who don't live in poverty don't seem to understand how much $3 can be if you just don't have it.  It might as well be $3 million dollars, because I just don't have it.

Which leads me to my next point.  We have no gas money to even get to the grocery store to buy food, though our food stamps came in today. It's 2:23 pm and I'm getting hungry.  Fortunately I have soda and another Powerade Zero in the fridge (not much else is in there!) so I can fill up on liquids.  There's been a lot of times in the past few years that I've had to go hungry, and the best thing I've found to keep hunger pains down is to drink lots and lots, to fill your belly with liquid.

Which brings me to my final point--pain.  I started off in pain, but then started feeling better.  Always one to overdo herself, I cleaned and now am under my heated blanket in lots of pain.  It's not a surprise that I overdo myself cleaning, I have been overdoing myself as long as I can remember.  I am happy, though, that I got something done.  Afterwards the pain was bad enough I ran to the bathroom, ready to be sick, and splashed ice cold water on my face over and over to keep from vomiting up my vitamins from the night before.

Sunday, March 10, 2013

Stuff I won in February blog contests

I haven't entered many lately, but sometimes I enter a lot of blog contests.  I won two contests in February, earrings and a Dramamine package.

The earrings are from the blog Mami Talks, it was described in her entry Stella & Dot Soiree Earrings {Giveaway} from the #3AmigasGuide.  It was the first time I'd read or entered anything on Mami Talks, and I really thought it was a cute blog.  I subscribed and will be reading it in the future.  It's bilingual, so I wish I'd seen it when I was trying to learn Spanish, but I switched my focus from Spanish to learning Italian.  The earrings are lightweight, which is really good, because I don't wear earrings often, so when I do my ears get sore easy.  I don't have that problem with these stella&dot earrings.  They're very pretty and would go good with jeans or dressing up.

stella&dot earrings
 
stella&dot Soiree earrings 


I'm wearing the stella&dot Soiree earrings I won!

The Dramamine package was from the blog Confessions of a Frugal Mind, and is described in her blog entry Travel Made Easy with Dramamine ~ Prize Pack Giveaway.  My favorite part of this giveaway is the bag, because it is large and has a zipper.  I put my crochet things in it: my books, hooks, yarn, etc.  I like to put my ball of yarn in it right under where the zipper closes, leave it open a little, and have a steady tension of yarn coming out of my bag, without worrying about cats getting in it, or it rolling off my lap.

Dramamine bag, 2 Dramamine boxes, & 2 Kids Dramamine boxes

My Dramamine bag with my crochet supplies inside

All this has reminded me that I haven't really entered any blog contests this month, which means I'd better start entering some if I want to win anything in March.

Wednesday, February 13, 2013

A cause for rejoicing

I'm so happy!  I just received a letter in the mail from my sister, and she had wonderful news.  For years she's been diagnosed with essential tremor, and has had the worst tremors I've ever seen.  In her letter she told me it was a misdiagnosis, and now her tremors are almost completely gone!  I cried when I read it, I was so happy.  I've missed my sister so bad and been so worried about her and her essential tremor.  I'm so thankful that she doesn't have it.

Wordless Wednesday: Cats are liquids?


Wednesday, February 6, 2013

Wednesday, January 30, 2013

Wordless Wednesday: A great Dollar Tree find

This is Vanilla and Milk Chocolate flavor and it's so good, I bet it could cause world peace...yummy

Tuesday, January 29, 2013

My favorite time of day ❤

My favorite time of day is the mornings, when DH (Darling Husband) and I first wake up, and we discuss the day ahead of us.  We play with the kitties, who are meowing loudly because they think they are starving to death.  We get in our first morning's laugh and we sit down together to check out what went on overnight on Facebook on each of our accounts.

My favorite time of day is the evening, when DH and I cuddle and watch Netflix.  We watch funny shows, or occasionally a funny movie or horror flick, cuddled up close.  We play with the kitties, as they've just woken up from their afternoon naps.  Sometimes we hold hands, and I love those times.

My favorite time of day is the nighttime when I'm the only one awake, and I'm lying next to a sleeping DH, reading an awesome book.  The cats come in and walk all over us while I read, and DH sleeps.  His face is so calm and serene in his sleep, even when he sometimes snores.  He's a snuggle-monster, too, so if I move a little bit, in his sleep he'll move to snuggle me closer.  It's so sweet!  I love to read at night, it's is the most peaceful, and fulfilling time for reading.

I love my honey so much.


Monday, January 28, 2013

Breaking Writer's Block

I hate to say it, but I've had writer's block for the past few weeks or so.  All my blogs have suffered, which includes Please Tape Me Back Together, Smart Fibro Chick, and my spirituality blog.  I finally decided the best way to get rid of my writer's block is just to write, and see what happens from there.

I am in touch with my mama!  I haven't heard directly from my daddy, so I don't know for sure if he still loves me or not.  My mom says he loves me, but I still have the fear that he really hates me on the inside.  I first wrote the letter right before Christmas, and they received it on Christmas Eve.  I wrote my sister as well, and she read hers on Christmas Eve, too.  I got the feeling that she is very angry and I'm so scared she won't want to be part of my life.  None of this went the way I planned, it went better.  I was hoping that they'd write back, but this is wonderful.


I love this picture, I don't look as pale in it as I usually do.  I got a cool catalog in the mail today.  It's called "The Stitchery" and it says "featuring Counted Cross Stitch."  Awesome!  Now I want to get more craft catalogs!  I'm sure Lion Brand yarn has to have a catalog and probably Red Heart yarn, too....as well as Hobby Lobby.  I like to do cross-stitch, and sometimes embroidery.

What is the difference between cross-stitch and embroidery, you ask?  Cross-stitch is is made by making tiny crosses, while embroidery uses many different stitches to create the design.  Cross-stitch needles are very dull, because they are not made to go through material, only to come up through the holes in the cloth.  The cross-stitch cloth with those little squares in it is called Aida cloth.  Embroidery needles are sharper, because they need to go through cloth.  Like all needles, both types come in multiple sizes.


Cross-stitch
Embroidery
                               

Cross-stitch needle
Embroidery needles


I am crocheting now.  What is the difference between crochet and knitting, you ask?  Crochet uses one stick with a hook on the end, while kitting requires two sticks.  Crochet always makes a loop that you work with, while knitting is different.  In crochet you work in rounds or in straight lines, while in knitting you can see that the yarn is worked straight up and down.

Crocheted
Knitted






                           
Crochet Hooks

                 
            Knitting Needles

Wednesday, January 23, 2013

Wordless Wednesday: Where, oh, where, can I find this tea?

I got this tea from a former Turkish pen pal and haven't been able to find it since. It is the best tea I've ever had.

Tuesday, January 15, 2013

Pushing everyone away

Lately I've been pushing everyone away from me.  I've been doing this for quite some time, because the time we had squatters in our house that wouldn't leave, and my brother-in-laws destroyed my hope and faith in humanity.  I'm angry all the time and only expect the worst from most people.  That's so different that how I was before they came.  I was happy all the time, even though I was always in severe pain.  I never got angry, and I always expected the best from people until they proved me wrong.  Our squatters and my brother-in-laws fucked me up.  I hate them very, very much.   I'm angry all the time and I have to force myself to think positively, when it used to come naturally.  I don't like being this person, I hate being this person.  I want to be who I was before they came, but you can't go backwards, you can only move forwards.  Don't leave a comment about forgiving them, because I never, ever, ever  will.

I need to purposely change this, and I think that socializing online will really help with that. My social anxiety doesn't cause anything except phones anxiety, these days.  I had found a great group of women online that I used to be part of, it was a group for [my religious path] headcovering.  However, since I am not involved in that practice anymore, and I only was for a short time, I don't have a spiritual group anymore. I can't leave the house often, so I can't go to any spiritual gatherings in person.  So, I'm looking for a spiritual group that "fits."
I want to make friends to have FUN with! Even if it is online, because I'm pretty much housebound.

I want to get active in two or three of my EDS groups again, too.  Not only does it help me stay up to date on what's going on with EDS research, who died, etc., but I have a lot of EDSer friends that I have ignored for a few months now.  I hope, after my long disappearance, they still want to be my friend.  One of the hardest things about having EDS friends is saying good-bye to them when they die young and unexpectedly.  Fortunately, so far, I've only known people in passing that have passed away.  I don't know how I'll handle it when someone I'm close to passes away from EDS, or a POTS related conditions.

A great website for those interested in the fiber arts
I want to also get involved in a crocheting group.  I think Ravelry is a good place to start.  I joined a few groups on it last night, including: Gay Crochet, The GLBT Disabled Support NetworkCrochet on RavelryChronic Stitchers, Hippie Crocheters, One Skein Crochet, Beginning Crochet, Queer Revelry, The Spoonies.

I don't want all of my day or all of my friends to be focused on health only.  I don't want to make only friends who share health problems or live with disability, though I treasure the ones that I know and still want to make more disabled women.  However, I'd like friends to be many types of women.  (When I say "meet other women" I mean online only, in a platonic manner, and have no intention of meeting in person.)    I'd like to meet women who are following the same spiritual path,  are other crocheters, like crafting, have challenges they deal with, too,  love pen palling, are the partner of someone with epilepsy, collects postcards, is a cat lover, are learning Italian...

I also have wonderful pen pals.  They are from the following countries: United States, UK, Italy, Belgium, Germany, AustraliaCanada, Singapore, Peru, and Spain.  If I can ever get all my letter writing under control, meaning catch up with it on a regular basis, I'd like to get some pen pals from Western Europe, the Middle East, and Israel.  I'd also like to have more Australian and Italian pen pals.

Because all lesbians are Superwomen!
I'd also like to be part of an LGBT group who emphasizes self-identity, rather other people labeling you, like "You are ___ because you are with such and such." and "You are bisexual because you are with DH."  I'm sick to death of being told my orientation, so sick of it I don't even correct it anymore.   I'm a freaking lesbian!  L-E-S-B-I-A-N.  Somehow my soul mate in this reincarnation ended up in the body of man, for reasons unknown to me.  And I love him very, very much.  His soul is entwined with mine, and will be every reincarnation.  He is the only man I'm attracted to, while women in general are the only ones I'm attracted to.  Have I made my point?  Accept it...DH is all man, and I am all lesbian and, altogether with our kitties, we make a wonderful family.
Yummy!

Aww, DH just brought me a can of full Diet Mountain Dew after I finished my Pepsi Max (it's Diet Pepsi with huge amounts of caffeine).  Isn't that sweet?  I'm going to go indulge in caffeine now.  Have a nice day!

Sunday, January 6, 2013

Horrifying pain

I'm trying not to scream, and can't stop the tears.  I'm in a black pit of pain, and it's shaped like a cone, so any progress I make immediately makes me slide to the bottom again.  My hands on the keyboard are excruciating.  I haven't thrown up from the pain today and am trying not to.  I feel like I'm going insane.  I can't keep living like this.  This is no life.  This is not living.  This is barely existing.  To exist is to hurt, to breathe is to hurt 100 times worse.  My hands, my back...my elbows, my knees...my neck, my feet...the list goes on and on until I've named every fucking body part I have.  I'm not sure this even makes any sense.  I'm in a pain induced haze.  I can't think, I can't talk because I'm afraid I'll lose the little bit of self control I have.  I exist, but I do not live.


Sunday, December 30, 2012

Review of 2012

January
In the first month of the year, I saw my endocrinologist and got great news. My thyroid looks like that of a normal person's! This means that my medicine is doing the job right. I also give myself thyroid massages about twice a week, and I suspect that may have helped, too. I was so, so happy to start the year off with just the two of us--DH (darling husband), our cats, and myself. In November we got a new kitty named Katya, who we fell in love with immediately. She enjoyed her first holiday season very much. One of the posts I did in January, that I was fond of, was Happy Monday! Let's do our ABC's!

Katya

Me
February
In February my estranged father had a birthday, I reviewed the book How to Be Sick by Toni Bernhard, and I reviewed various OTC topical pain relievers.  I got to go to Hobby Lobby, a crafts store, in another, bigger, town.  It was awesome.  I got some material and scrapbooking pages.  The only bad thing about Hobby Lobby is that it is a really expensive place.  For Valentine's Day, DH got me a whole bunch of stuff, and I loved it (and still do!).  I was so thankful to have our house just to ourselves and our kitties.

Me

Hobby Lobby

March
In March I posted awareness ribbons, I began the Behind the Blogger Challenge, and my best friend had major surgery.  Of the Behind the Blogger Challenges I did in March, some of my favorites were Day 1, Days 2 and 3, and Day 7.  In March we endured a lot of rainy weather, which was very painful on my joints.  I had many flares, with only a few days in between each flare.  I was still so happy to not have anyone living with us anymore, and still am happy about it.

Me, in a pale and in a painful flare

Me, feeling half-way decent

April
April came and went so quickly this year.  I planted my seeds for my garden and experienced many flare days.  I felt like I was the poster child for "but you don't look sick!" in April.  Unfortunately, whether I look sick or not, I am.  I found a group on Facebook that month that I felt like I belonged in, and loved the Sisterhood I found there.  I gained the experience of meeting others whose beliefs are different than my own,  as well as similar to my own, so I think in that respect it was also a good thing.  I love knowing how others believe, whether it's religion, politics, or something else.  It exposes me to new ideas and challenges what I believe.  I learned a lot from my Sisters in the now defunct Facebook group, Covered in Light.  The group disbanded a couple of months later, and I lost touch with many of the sisters, since I didn't have as much in common with them anymore, but I learned a lot from these fine ladies.  In my blog, I did the Behind the Blog Challenge and reviewed the book POTS: Together We Stand Riding The Waves of Dysautonomia by Jodi Epstein Rhum with Svetlana Blitshteyn, MD.

Me

DH and me




May
May was another month full of severe pain.  I flared a lot, but I tried to keep a positive attitude.  Still, I was very frustrated with the pain, as there was no end in sight, or any relief to look forward to.  I wrote about it in the entry Will there ever be some relief?, explaining what it is like to go through constant, severe pain.  I won quite a few things in blog giveaways, and I read a lot, including The Mists of Avalon, by Marion Zimmer Bradley.  It's a huge, but interesting, book.  DH's inguinal hernia got a lot worse, and I worried about him a lot.  He had a bad abscess in his mouth at the same time, so they couldn't do surgery because of infection risks.  I realized I'd lost enough weight I could fit into some of my old clothes, which made me very excited, to say the least.  I gave a lot of thought to PCOS and babies, and wrote about it in the blogs Fertility and eating healthy, and PCOS and Aldactone.  I finished up the Behind the Blogger Challenge and celebrated Memorial Day by remembering my Grandpa and Grandpa Ezra.

Me in my favorite shawl and trying out some new make-up

Me in a flare, smiling despite the pain :-)




June
Katya had her first birthday, and I had my 31st.  My birthday went well, I enjoyed it, and got to spend the day with my DH.  I started getting back into crocheting.    I wrote about how I feel when people try and be PC about disability.  The summer was getting very hot already, and I kept forgetting to water my seedlings, so they died soon after they sprouted.  Usually I do better than that, and plan to do better next year.  I started wearing my Medical Alert bracelet, the third one I've had since I got my first one 4 years ago.  I took pictures to show off my most recent finished crafts, my Togy [dog] stitch and my religious embroidery.

Me kissing Katya

Niki and Katya cuddling on the clothes hamper


July
My POTS became a huge problem for me as the hot weather kept getting hotter.  I stayed inside for the most part, but even with the air conditioning on, some places in the house were hot.  I made a no-sew fleece blanket for my best friend who was having surgery months ago, and finally put the picture and instructions up.  I talk here about my pen peeves concerning bipolar.  I write about a natural remedy for pain relief I use here, and you can see an awesome picture of thyroid art here.

Niki 

Me


August
My little girl, Niki, turned three years old at the beginning of August.  My pain continued to grow more severe, and I had many flares.  I got strep throat, something I've caught a lot as long as I can remember.  My symptoms of severe fatigue were back, along with grogginess, and sleepiness.  It frustrated me a lot because I felt like was passing me by as I tried to put together a coherent sentence and keep my eyes open and not crossing.  It frustrated me even more when people made jokes about something they don't know anything about, and said they wish they could just sleep all the time.  I just wanted to (and still want to) be awake!  Unfortunately, this is an ongoing problem.

Me


Me


September
In September, I admit, I was already looking forward to the start of the holiday season--Halloween.  I did a lot of reading that month, though one book was so boring it felt like it was never-ending.  I started studying PCOS in depth.  I knew some about it, but decided it was time I knew a lot more.  Because of my Seasonal Affective Disorder (SAD), I started getting more depressed, which is normal for me in winter.  I used graphics I found online to explain dysautonomia, while another graphic lists the symptoms of POTS.  I also write about trying to decide whether or not to write my abusive father, or if a relationship online is a good idea.

Niki

Me


October
I was so exited about Halloween this year.  The kitties got all dressed up, Sterling was a Zebra Lone Ranger, and Niki and Katya were both Princesses.  It was awesome.  I continued my reading and studying about PCOS, determined to find a way to lose weight despite my PCOS, among other things.  I got a lot of reading done.  I read a lot of WWII books this year, and the biographies I'd read about the Holocaust had really touched me, as they would anyone who wasn't made of stone.  My pain continued to be severe, and I flared a lot in October.  I shared Halloween cartoons/comics here, here, here, here, and here.  On Halloween I shared my favorite Halloween movie, Garfield's Halloween Adventure.

Katya playing

Niki playing


November
November was a month of many flares and a lot of pain.  In fact, I'm not sure there were any days in November when I wasn't in a flare.  My POTS was still not under control, and still isn't.  I had "baby fever" like you would believe, and still do!  I spent a lot of time working on my spirituality blog, and writing my pen pals.  Some letters were almost a year late, and I understood when one pen pal told me she needed someone who writes more often.  She was an awesome lady, and I'd be lying if I said I didn't tear up a little when she told me, no matter how much I understood.  We had a lovely pork roast for Thanksgiving dinner, with potatoes, carrots, and onions.  We also had rolls, and a friend brought over three slices of pie we split, as well as a serving of something Jim ate the next day.  I was studying PCOS still.  We were the recipients of good will this holiday season, and tried (and still do) to pass on the good will.  November was Epilepsy Awareness Month, and I informed people what seizures and epilepsy arewhat to do in case of a seizure,  and two pages of graphics explaining epilepsy that can be found here and here.

Me

Me with "baby fever"


December
This Christmas was a good one, much better than the last two years.  We didn't have much money, but having my family close and safe with me over the holidays meant more to me than anything else.  Not that having more money wouldn't have helped, but I was happy to have my family.  December was a month with a lot of pain, I had four flares that month.  That meant for the majority of the month I was in a flare, with only a couple days in between flares, at most.  I love Charlie Brown's Christmas, but I missed it this year.  Fortunately, I did get to blog it.  One of my favorite signs of the season are Christmas Trees.  We put up a little one this year, so when the cats knocked it over, it wasn't such a big deal.  I also blogged a bunch of Christmas tree pictures, because what is December without Christmas trees?  I spent New Year's Eve with DH and the kitties, though we had friends stop by during the day.  When it struck midnight we kissed, and have hopes for a better 2013.

Our Christmas tree

Me in a Santa Hat.  Ho! Ho! Ho!  Merry Christmas!