My Journey With

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

Sunday, April 13, 2014

Pizza and cat treats

DH made home made pizza last night and it was so good.  We each had a leftover pizza a few minutes ago, and it was as awesome cold as it was hot.  Yum.  Home made pizza has been my favorite food as far back as I can remember.  I used to beg my mom for it all the time when I was little...and when I was a teenager...and when I came over to her house as an adult.  My mom is a great cook, and so is DH.  I'm lucky that DH cooks so good, because I can't do much in the kitchen with this awful pain.  I want to start making some simple things with a chair in the kitchen, but we don't have a chair (like a bar stool with a back) yet.

My tummy hurts so bad today.  Some days my pants are loose on my waist, while that night or the next day they are so tight I feel like I'm being squeezed to death.  I kind of suspect I may have a food sensitivity that causes all the bloating, but honestly if I do I don't want to know about it.  I'm rather go on uncomfortable than have to give up milk products or whatever.  My sister is lactose intolerant, and she can't eat cheese, milk, ice cream, yogurt...ugh, it's horrible on her.  When I lived with her we made our home made pizza from imitation cheese that didn't have any milk in it.  It doesn't melt well, and it doesn't taste well, either.  I feel so bad for her, because the girl's favorite drink is milk, and she loves cheese and ice cream.  Sometimes she takes a Lactaid, it helps her digest milk, but they are so expensive she doesn't get to often.  Sometimes, though, she'll eat or drink a milk product anyway, because she misses it so bad.  I think she weighs her options and decides that it's worth being sick now and then.

Our cat's favorite treats are Temptations brand, and I just found out that they came out with a new kind with a cheesy middle.  It's called Whiskas Tempations Cheezy Middles.  Sterling, our Maine Coon boy, absolutely adores cheese.  I can't wait to get it for him, he will be so excited.  I saw the ad in "Us" magazine.  I get "Us" and "Glamour," free from RewardsGold.  I found the link online, and both started coming in only a couple of weeks after I ordered the free subscription.

My ribs on my right side hurt every time I breathe.  My upper back hurts when I breathe, too.  I am so very sick of pain.  I have been in pain every day since I can remember, but it didn't get severe all the time until right around the time DH and I met.  Today I'm just at normal-high levels of pain, but for the past few days I was in major pain.  I had a really bad headache for a week, but today the pain finally went down to my normal daily headache pain level.  I am very thankful for that, because of obvious reasons.  So, as I end this post, I want to ask my readers...

...what are you thankful for today?

Friday, April 11, 2014

Sharing Germs

Ugh. I'm sick with a cold. DH had it first, then I caught it from him. At least I think it's a cold. I woke up this morning feeling bad with a cough and a really sore throat.  My nose isn't running, though.  I have no idea if I have a fever, because we don't own a thermometer.  I'm pretty sure it's just a cold, though.  DH still has his cold still, and he's still coughing a lot.  I don't usually get sick, but DH gets sick easy and passes the germs to me.  Only when that happens I get sick.

Right now I'm getting ready to watch South Park with my sweetie.  The kitty girls are all asleep, and only Sterling is walking into the living room every few minutes.  Most of the night he's been following DH everywhere, and howling when DH is out of site.  He's such a sweet baby, and he's so attached to his Daddy he can't bare to be away from him.  I have the most awesome family: DH, Sterling, Niki, Katya, and me.  

Me this past Christmas with my Eric Cartman doll that DH got me

Tuesday, April 8, 2014

My MOM just got diagnosed with Chiari!

Chiari Malformation
Chiari Malformation
Yes, it's true.  My mom, who does not have Ehlers-Danlos Syndrome (EDS), just got diagnosed with Chiari Malformation type I.  (The previous link is directed at my EDS blog Please Tape Me Back Together.)  Her doctor said that her Chiari is genetic.  I told her that I at one time suspected Chiari in myself, but eventually came to the conclusion that it was my Postural Orthostatic Tachycardia Syndrome (POTS), once I got diagnosed with it, that was causing all of my strange symptoms, including my daily headaches.  I never got tested for it, because, well if I do have it frankly I don't want to know.  I don't think I do, though.  The MRA (Magnetic Resonance Angiogram) she had also shows that she's has had a lacunar stroke, and has some plaque build-up in her carotid artery.  Her neurologist said that often you can see brain damage from having diabetes (she has diabetes type II) but because she's so good at taking care of it, her brain doesn't have any diabetes damage.  Yay for that!

I had my A1C tested recently for diabetes, and it was really good.  DH just had his A1C tested, and it showed that he has elevated blood sugar and is at risk of diabetes.  The levels were out of the normal range, they were too high.  I'm at high risk of diabetes because I have Polycystic Ovarian Syndrome (PCOS), I'm overweight, and my mom and Grandma have diabetes.  My doctor told me once, that considering my high risk factor, I have "one hell of a pancreas."  I've also been told before I have "one hell of a liver," because once I had a chronic Tylenol overdose, and lived.  They expected me to die or need a liver transplant.  It was a chronic overdose because I read the bottle wrong and had been taking five extra strength Tylenol every four hours for 72 hours.  That's a lot of Tylenol.  I realized something was wrong when I started losing fine motor control.  I looked back at the bottle and realized my mistake.  I was taken by ambulance to the hospital because I couldn't drive, and I was in the ICU (Intensive Care Unit) for three days.  Somehow I ended up with no liver damage at all!  I was very happy.  At the time I only told two people I was in the hospital, and neither even called to see if I was alive, I had to call them when I got out.  That was back in September of 2008.  It was the scariest time in my life, because I was all alone and so, so very sick.
Location of Liver and Pancreas
Location of Liver and Pancreas

Well, I think I'm going to end here.  If you are familiar with Chiari, please leave in the comments anything I might be able to tell my mom to reassure her.  I've done research on my own, but appreciate any new information.

Monday, March 31, 2014

In lots of pain, with loud asshole neighbors

From "FB You Know You Have EDS When"
My pain levels have been horrible the past two days!  I'm not at the level of a flare, but I was stuck in bed most of the day yesterday.  I'd wake up in pain, and all sweaty, and then I'd somehow fall asleep again, only to wake the same way again.  Today I've been lying on the couch, reading and napping.  Sometimes I'm at a loss, and wonder why my life is this way, what I have done wrong, so that I can fix it.  Unfortunately, there is no "fixing."  There's only surviving, or giving up.  I don't ever want to give up.  I've been in my wheelchair a lot this past week.  Our house isn't very handicap accessible, and my chair won't go everywhere.  Actually it only goes a few places.  It can't get all the way through the living room, and it can't get in any doorway, like the bathroom or the bedroom.  So I use my cane to try to make it the rest of the way, often DH helps me stand and lets me lean on him until I get to the bed, the couch, etc.

I was in extra pain lately anyway, but it really stepped up hard after a shower I took that left me so fatigued I couldn't even move a finger, or lift my head.  I've only been that fatigued a few times before.  Then that same night, when I was feeling better, I got dizzy and almost face planted into the glass top table.  After a moment of panic and leaning to my right side, I was able to miss it, but barely.  I barely missed falling on our elderly cat, Sterling.  I ended up hurting my wrists, but that was the extent of my injuries.  Then the next day (yesterday) the pain was incredible, and I was in bed all day.  Today I've only been off the couch three times, it hurts so bad to move.  Typing hurts, but I think writing helps get my mind off the pain.

Our car has been broken down for over a month; it's twenty years old and would cost more to fix than it's worth.  Still, we have to get it running again.  We can't afford car payments at this time, so getting another car is out of the question.  We are both really worried about it.

I love this sign!
Our neighbors are these drunken jerks who play their loud salsa music so loud it rattles the windows, and reverberates in my chest and jaw.  They play every single day.  On weekdays they usually start around 3:00 pm and go to 10:00 pm or 11:00 pm.  On weekends they start around 10:00 am and go until 3:00 am.  They are violent assholes, and everybody in the neighborhood is scared of them.  DH is the only one brave enough to walk up to their house and ask them nicely to please turn the music down.  Sometimes they pretend to turn it down a tad, then as soon as he is ten feet away, turn it up higher than before.  Other times they say "What music?"  Still other times they straight out threaten violence.  We can't call the police for a noise complaint, because the police wouldn't be here forever to protect us from their retaliation.  I even asked DH the other day if he thinks it would be prudent to move, but he said that we'd run into problems everywhere we lived.  It's not like we could afford to live in a nicer neighborhood than this, anyway.  It isn't a really bad neighborhood, but it isn't good either.  We get our car broken into on a regular basis, and things stolen off our front porch a lot.  Still, I've never run into this particular problem in my life.  Loud music is one thing, but this??

DH just got home, so I think I'm going to end.  Hopefully tomorrow will be a better day!

Thursday, March 27, 2014

A rambling, painful day

I'm not sure where to start this bog entry, after so much time since my last one.  So I'm just going to write, and see what happens.  Today is a nasty rainy day, and my joints know about it.  Lately I've been having a lot of back pain, way more than usual.  I think it's from our bed, though.  The bottom left corner of the bed frame was broken by a friend who just plopped down on it.  I'm not sure how it happened, but I think she hit it in just the right way, and it completely broke.  It now drags the ground.  Once that happened, it wasn't long until the middle of the bed sunk in.  So now when you lie down by yourself it sends you rolling to the center.  If I lie down with DH then we both roll into the middle and balance each other's bodies in the sunken middle of the bed.  DH is also having back and neck problems.  Needless to say, we wake up in more pain than before we went to sleep.  So until we have enough saved up to buy a new mattress and box springs, our back, neck, and my hip pain will continue to get worse.  I can't help but be just a tad jealous of people who can just go out and buy one, especially those who can buy a nice one, like Tempur-Pedic.

I would like just one day without severe pain.  I want just one day where the pain isn't so severe it moves me to tears.  If I could have a day like that it would be easier to handle the bad days.  I've had low pain days before, but they don't happen often.

I got my pink recumbent bike!  Keep in mind it's hard for me to walk, so three minutes starting out was my max.  Then I moved up to five minutes, and today I did seven minutes!  I'm so excited.  My first goal is to do ten minutes.  Eventually I want to only have to use my walker on bad days and maybe in huge stores, like Wal-Mart.

There is hail coming down now.  My joints, muscles, collar bones, neck, feet, and shoulders are all extremely painful.  Lately I've been kinda pissed that not only do I have to deal with EDS, but so does my best friend.  My DH doesn't deserve to have seizures.  He doesn't deserve to be beaten up by his own body regularly during seizures.  My best friend not only has EDS, but POTS and fibromyalgia, too.  She's had to have two serious back surgeries and numerous eye surgeries.  It  breaks my heart.  My other best friend has psoriasis, and has to deal with both the embarrassment and anxiety that accompanies it.  Why is that?  Why do these things happen to such good people?  My DH, both my best friends, and myself as well; we don't deserve this.  I try to be a kindhearted spoonie, a loving partner, a kittymommy worthy of my kitties, and an empathetic and helpful person.  I've often wondered if I was a bad person in my previous life, and am being punished for it in this life.  I know it sounds whiny, but what did we all do to deserve this?

Friday, January 17, 2014

To my best friend, Togy: I miss you so much my heart cries

Togy Angel
Dear Togy,

You would have been twenty today.  The last time I saw you was November 5th, 2007.  Situations beyond our control parted us, and my heart has been breaking since.  Growing up is hard to do, and growing up bipolar, when both parents already have mental illness, is no picnic.  Sometimes you were the only thing that kept me alive, because I knew you'd miss me and I didn't want to break your heart.  You've saved my life so many times, Togy.  I was a clumsy, from the time I was a kid on.  When I'd hit myself in the head or fall over, I'd always open my eyes to your standing over me, staring in my face.  If I didn't open my eyes and talk to you soon enough, you would bark for help.  We had a mental and spiritual connection on many levels.  We both would get depressed at the same time, even, even if we hadn't seen each other.
My stuffed animal Togy from my sister
You put up with me dressing you up like such a good little boy.  You were so good at playing "give me your paw," it was your favorite game.  It made me angry when people yelled at you.  They actually expected me to do the same, and when I wouldn't, yelled at me, too.  On the few occasions I did crumble under their pressure, I am so sorry, please forgive me.
My sister's dog and Togy on their wedding day
When Aunt Gloria came down with cancer the first time, you sat in my lap, and licked away my tears as I sobbed.  There were so many times you licked away my tears.  You had the best little doggy kisses, and I miss your dog breath and big black wet nose so bad.  I still have the ear of your first baby doll, your elephant, and your first collar.  I'm crying so hard writing this that I keep wiping my eyes so I can make out the letters on the computer screen.  I love you, Togy, so much.  In my next lifetime, please reincarnate with me; I want to be your best friend in every lifetime.

Togy Puppy Pictures

Playing tug-of-war

Being pretty with my baby

Togy's 1st day at home - 3 months old

Togy's first hunt - a tame rabbit, and the rabbit was not harmed in any way

Togy and his Mommy

Togy puppy

Togy's first toy - I still have the elephant's ear he ripped off

Togy looking beautiful under the Tulip Tree

Togy relaxing in the sun and shade

Togy Dog Pictures

Togy taking it easy after a haircut
Togy giving pitiful eyes and smiling

Togy looking all hunter-dog

Togy getting a bath

Togy giving his Grandpa (my dad) his paw, which was his favorite game

Togy on the roof of his huge dog house

Monday, January 13, 2014

So much, so much pain

I feel like a broken record lately saying..."OMG, I hurt so bad...This pain is horrible...I can't take it anymore...I'm gonna lose my mind if this keeps up...OMG there has to be something I can do...I hurt so bad...OMG it hurts!"  I say at least half of this through tears.  Even if I don't say it out loud, it plays over and over in my head.  The thought of coming off my meds eventually, when we are ready to start trying for a baby, terrifies me.  I'm trying this Turmeric Curcumin Gold made by Nutrigold, right now.  I don't know if I've seen any difference yet, it might be too soon to tell.  I got it for free for a site I review items for.  I've tried three other versions of Turmeric Curcumin.  I think one was Spring Valley 500 mg Turmeric, and the other two were Jarrow name brand.  When I took the Spring Valley 500 mg Turmeric, I was also taking Doctor's Best 1500 mg MSM.  With first Jarrow one I tried, Jarrow Formulas 500 mg Curcumin 95,  noticed a difference, but was taking Jarrow 1000 mg MSM at the same time.  With the second combination I tried, I noticed no difference in my pain levels.  The third Jarrow kind I tried , Jarrow 500 mg Curcumin Phytosome, I noticed no difference, and I didn't take MSM with it. It was a little different kind than the first Jarrow one I tried.

I'm trying to keep my life full of things that don't revolve around EDS, fibro, PCOS, or any other illness.  I've been reading more lately, and I've been watching a lot of movies.  I've also been learning about herbs; I'd like to someday become proficient with many healing herbs.  Healing others is something I'd really like to do.  I want to work more on my Italian.  I am going to draw up plans for a fantasy garden sometime in the next few days.  I've been concentrating a lot on my spirituality.  I started writing some of the many pen pal letters I owe.  I've been spending extra time with the kitties.  Lately my hands have been hurting, but when they aren't, I like to crochet and cross-stitch.  I'm getting really tired now and still need to do our taxes.  Enjoy this picture I took today of Niki.

Wednesday, January 8, 2014

I feel so stupid

Today, on Twitter, some people I follow but don't really know, were talking about how they were so glad they were not one of the "stupid people who only speak one language."  They were all from large, East Coast cities.  I feel like such a stupid country bumpkin right now.  I am learning Italian, but I'm still a beginner, I definitely would say I know Italian yet.  It's very slow going, because when I get depressed I don't study much, and my mind turns to mush.  I've been crying a lot; I've been really depressed today anyway.  I recognize that our school systems need to change and start efficiently teaching foreign languages at younger ages, rather than jokingly doing so in high school.  I took two years of Spanish in high school.  Most of what we did would be considered "arts and crafts."  We did things like make Day of the Dead puppets, hollowed out and decorated eggs, and made papier-mâché piñatas.  It was such a joke that some boys made theirs of a pair of huge boobs, and made a good grade on it.  The class was like a circus, and I was literally beaten up during class more than once, by the star (and very male) football player/wrestler.  Needless to say, the only thing I know how to say in Spanish is ¡Hola!, biblioteca (library), and garage (garage).  DH taught me lo siento (sorry) so when I bump into people in Wal-Mart who only speak Spanish I can be polite.  I'm always afraid to say it though, because I don't know if I'll sound racist by speaking Spanish to someone who may know English.  Then again, will I sound racist to say sorry in English when they may only speak Spanish?  I don't know what the right thing to do is.  Anyway, that's beside the point of this entry...

I feel pretty stupid, since I only speak one language already.  Since reading that on Twitter, I really feel stupid.  DH was fluent in thirteen languages before he had a severe head trauma that resulted in epilepsy.  Now he "only" knows five.

I don't want our child to be struggling to learn his or her second language in their thirties.  I don't want him or her to be as dumb as me, so at least half of the baby board books and children's books I've already collected are bilingual.  We've decided our child should at the least know Spanish and Arabic.  We plan on homeschooling, so teaching foreign languages will definitely be part of the curriculum.  DH doesn't know Arabic yet, but he picks up languages fast.  Of course, he picked up languages faster before his head injury.

I know eventually I'll get Italian down, and when I do, I someday want to learn German, too.  Since English is a Germanic language, and it would make my personal WWII studies easier and I'd able to study more in depth, I think German would be a good language to learn.  After all, I have the rest of my life to keep learning.  It's just that reading that conversation on Twitter really got to me.  I've been feeling depressed and stupid anyway lately, and I guess it was just the straw the broke the camel's back, in a way.