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 I Rapid Cycling With Psychosis ~ Migraines ~ Obsessive Compulsive Disorder (My OCD is currently in remission except for hoarding) ~ 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) ~ Piezogenic Pedal Papules ~ Hashimoto's Thyroiditis ~ Seasonal Affective Disorder (SAD) ~ Multiple Phobias ~ Chronic Headaches

Tuesday, April 22, 2014

Happy Earth Day!


The first time I became aware of "saving the earth," recycling, and conservation, I was eight and it was 1989.  A lot has changed since then.  The products we use are safer, cities don't smell as bad, the air is cleaner, we recycle more, etc.  Today being "green" isn't just a thing a few people do, but something everyone tries to do.

I try to do my part, by buying the most responsible products I can afford, using less chemicals, not using foam containers, recycling aluminum cans, reusing old paper, lower the level of water in our toilet, and other things.  I can still do more than I am, though; we all can.

What do you do to help the Earth?  Plant a garden, pick up trash, go organic?  Let me know in the comments!



Sunday, April 20, 2014

A doctor who listens and Happy Easter

Ah, snot.  The remains of a cold that stay with you for a couple of weeks after everything else goes away--snot.  We finished off our box of Kleenex a few days ago, and have sense gone through two rolls of toilet paper blowing our noses.  I'm still waking myself up at night coughing, too.  Hopefully it will be gone soon, though with allergy season starting I doubt it.  I'm allergic to tree pollen more than anything else, and, well, Spring, the time of tree pollen, is upon us.
Hoppy Easter!

Today is Easter, so for anyone who celebrates, Happy Easter.  We want to color eggs sometime this evening, and I already got my chocolate Easter bunnies from DH.  He got me a Reese's Peanut Butter Cup bunny, and a Dove chocolate bunny.  The Reese's bunny was filled with peanut butter.  Admittedly, the Reese's bunny has already started traveling to my tummy.  I haven't tried the other one, yet.  I want to eat it tomorrow.  DH is so sweet to me!

A big theme in my blog is  mental illness.  I have mental illness, as well as every person in the family I grew up with.  At least I recognize my mental illness, which is more than I can say for some people.  I have a new pdoc, and she is taking my depression from my bipolar seriously.  Finally!  With my last pdoc, I constantly told him how depressed I was (though I admit I let on it wasn't as bad as it is), but he still refused to do anything about it.  He even made me feel stupid for asking for help.  His advice was to get out of the house more.  I told him it is very hard for me to get out often because of my pain, and he said that I needed to do it anyway.  Easier said than done!  Now, this new pcod I have has changed two of my medications.  I feel like I can talk to her better than my old doctor, possibly because she's a woman.  While I certainly don't "hate all men," I do feel uncomfortable around most men.  I don't know exactly why, I just do.  I've always been that way, all my life.  Or since I was four and my cousin hurt me, anyway.
MaxHeat by SoftHeat Heating Pad Moist/Dry

I got a heating pad when my money came in this month, and I've been using it a lot.  Right now it is on my lower back and tailbone.  Lately I've been having a lot of upper and middle back pain all the time, as well as tailbone pain when I sit or walk.  My heating pad is SoftHeat brand.  It has three settings and they are all hot.  It's really big, but I kinda wish I had two others; I'd put them on my right hip and upper back/shoulders.

I've found that heat really helps me, and when pain is in my head or neck, ice helps me.  What have y'all found helps you?

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.

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