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 ~ Generalized Anxiety Disorder ~ Non-suicidal Self-Injury (NSSI) ~ Social Anxiety ~ Hashimoto's Disease (Autoimmune Hypothyroid) ~ Seasonal Affective Disorder (SAD)

Tuesday, August 26, 2014

National Dog Day!

I miss you all so much! 

Our family dog Lucky in the snow
Rest In Peace
about 1989
Our family dog Lucky posing with my sister
Rest In Peace
about 1989
My sister dressed up our family dog Lucky
Rest In Peace
about 1988
My sister's dog Nippy and my dog Togy getting married
May You Both Rest In Peace
about 1994

My sister's dog Nippy and my dog Togy playing
May You Both Rest In Peace
about 2001

My sister's dog Nippy and my dog Togy playing
May You Both Rest In Peace
about 2001
Togy lying in the shade on the cool grass on a hot summer day
Rest In Peace
about 2001

Togy when he was  puppy and playing with his first toy
Rest In Peace
about 1997

My dog Togy with a dazzling smile
Rest In Peace
about 2004

My sister's dog Nippy
Rest In Peace
about 2003

My sister's thirsty dog Nippy
Rest In Peace
about 2001

My sister's dog Nippy eating food from my dad's hand
Rest In Peace
2007
Our Border Collie Ophelia curled up on her fleece Harry Potter blanket
Rest In Peace
2008

Getting hugs and kisses from the Daddy
Rest In Peace
2008

Our Border Collie Ophelia getting lovin's from Mommy
Rest In Peace
2008

Our Border Collie Ophelia and her toy pink bear
Rest In Peace
2008

My mom's dog Lady in a coat and puppy mittens for going out into the snow
2005

My mom's dog Lady with her special Disney Princess blanket
2006

My mom's dog Lady wearing her green dress
2005

My mom's dog Lady with her special Disney Princess blanket
2006

My mom's dog Lady in one of her many beds
2006

My mom's dog Lady helping decorate the Christmas tree
2005


Thursday, August 21, 2014

Experiences with accidental mustard gas

Today I was thinking about the time when I was living by myself, after I got the Order of Protection against my parents, in 2008.  It was before I met DH, and I had a few friends, and many more acquaintances, only two of whom I allowed to know where I live, much less what town I lived in.  Remember, at this time I was trying to keep where I was living a secret from my parents, who I got the Order of Protection for.  So, basically only my social worker, AW, and AG knew where I lived.  (After I came out to AW I found out she not only outed me to my mom, my mom's friends, AW's friends, and even AW's grandma, but years later I found out she also gave my address to my parents.)

I always picked one day out of the weekend to clean my house from top to bottom.  I cleaned everything on weekends, and cleaned every day throughout the week.  You could eat off my bathroom floor, because it was always immaculate.  Though you would look kind of silly eating off the bathroom floor, so I don't actually recommend it.

One day I was cleaning the bathroom, really scrubbing it down, when I mixed a cleaner that I knew had ammonia in it, with what I was sure did not have bleach in it.  It wasn't long until I figured it out, but by then I was really ill.  I found myself crumpled on the living room floor, barely conscious and terrified.  I was only about five feet from the door, but I wasn't sure if I could get there.  The thing that kept me going, as I scooted my body across the floor was the thought that no one would find my body for a week (it was summertime) and I would be a stinking carcass by then.  The thought of me being found rotting and stinking was the one thing that kept me going.  Needless to say, I made it to the door, and crawled out onto the front steps.  Once I started getting fresh air I started feeling better, but I was shaking like hell.  I wasn't sure if the shaking was from the anxiety of the whole experience, or residual effects of being in a house filled with mustard gas.  It was really scary.

What did I learn from this experience?  Before you let two cleaners mix, read the damn bottle, because there might be ingredients you don't know about!

Monday, July 14, 2014

"Music Swims Back to Me" by Anne Sexton

Anne Sexton (November 9, 1928 - October 4, 1974)
Anne Sexton (November 9, 1928 - October 4, 1974)

"Music Swims Back to Me"
BY ANNE SEXTON

Wait Mister. Which way is home?  
They turned the light out
and the dark is moving in the corner.  
There are no sign posts in this room,  
four ladies, over eighty,
in diapers every one of them.
La la la, Oh music swims back to me  
and I can feel the tune they played  
the night they left me
in this private institution on a hill.

Imagine it. A radio playing
and everyone here was crazy.
I liked it and danced in a circle.  
Music pours over the sense  
and in a funny way
music sees more than I.
I mean it remembers better;
remembers the first night here.
It was the strangled cold of November;  
even the stars were strapped in the sky  
and that moon too bright
forking through the bars to stick me  
with a singing in the head.
I have forgotten all the rest.

They lock me in this chair at eight a.m.  
and there are no signs to tell the way,  
just the radio beating to itself  
and the song that remembers  
more than I. Oh, la la la,  
this music swims back to me.  
The night I came I danced a circle  
and was not afraid.
Mister?

Anne Sexton, “Music Swims Back to Me” from The Complete Poems of Anne Sexton (Boston: Houghton Mifflin, 1981). Copyright © 1981 by Linda Gray Sexton and Loring Conant, Jr.

Anne Sexton quote

Wednesday, June 25, 2014

Slightly better today

Italy
Italy
I finally fell asleep last night around 4:30 AM.  I still have a bit of the electric currents in my skin, with a restless body.  It's driving me a bit insane.  I don't know what the problem is, either.  I mean, I haven't gone without any of my meds, so I'm not going through medication withdraw, which is kinda what it feels like.  I feel a bit stressed and insane over it.  At least the feeling isn't as strong as it was last night.


I plan today on writing at least three letters to my pen pals, and doing some time on my recumbent bike.  For anyone who doesn't know, a recumbent bike is just a stationary bike with the seat being more like a real seat with a back, and you put your legs out in front of you, rather than down from a small hard bike seat.  It's the kind they use in physical therapy.  I got used to doing it in physical therapy when I took it.

So today I plan on writing a pen pal in Michigan, one in Oz (Australia), and one or two in Italy.  The letter to Michigan should take the least time, so I may be able to get four letters done.  I hope so, my poor pen pals have waited long enough for my letters!  I feel bad that lately, actually the last two years, I've been so bad at getting letters back on time.  That used to never be a problem.  In the last two years I've been real depressed, had hands hurting, and have had my whole body hurting too bad to write.  I don't know what my excuse it on my few good days.  I just don't have one.  It isn't that I don't care, I care so, so much about my pen pals, and consider them true friends.  I don't know what my problem is.  Sometimes I want to kick my own ass.  After those four, I have two pen pals in Germany I need to write, and one in Singapore.

Australia (Oz)
Australia
Someday I'd like to learn German, and I'm learning Italian now.  I still can't believe how many people there are in this world that speak many languages, while most Americans only know one, or maybe two, in the case of immigrants and highly educated people.  Well, someday I know I'll be able to at least say I know Italian, even if it takes me 15 long years until I can write, read, speak, and hear it with understanding.


Skin like electrical currents, body restless and insane

I'm going nuts.  It's 3:30 a.m. and I'm up out of bed blogging.  My whole body seems to be going crazy.  My entire body is going through what I imagine people with restless legs syndrome go through with their legs every night.  But instead of just my legs feeling like I have to move, it's my entire body.  My skin feels like it has electric currents running through it.  My whole entire body keeps moving, from arms, to legs, to torso.  I've done stretches, but it didn't help any.  Right now I have a heating pad on my back in hopes it will both help with my pain and calm my nerves..  I took two Benadryl, so hopefully it will kick in soon.  Between the heating pad and the Benadryl, I will be able to lie down long enough to fall asleep.  I think I may be calming down a bit, and that the Benadryl is working.  I've tried meditation quite a few times, but I'm not in the daily practice of it anymore, so I wasn't able to do it as well.  Well, I'm going to try lying down now.  Wish me luck!
Benadryl
Benadryl

Monday, June 16, 2014

Getting older

I turned 33 on June the 12th. Thirty-three. I've been alive for 3.3 decades. Well over a quarter of a century. The 80s were a long time ago, longer ago than it seems possible. I have a tiny crease under my eyes, and since experiencing severe stress in the fall of 2007 until early 2008, I have dark circles under my eyes that never go away. The veins in my hands and feet have become more prominent, and my skin no longer has the glow of youth. I am forgetting stuff all the time, as I believe years of heavy psychotropic medications, along with medication for other medical problems, have affected my brain. That's not to mention the decrease in white and gray matter in my brain from fibromyalgia; white and gray matter abnormalities in the brain, also from fibromyalgia; and the shrinkage of my overall brain mass from my bipolar. The longer you have bipolar and fibromyalgia, the greater the shrinkage and decreased white and gray brain matter. Depressing. It's been 15 years since I graduated high school! I'm in shock. It won't be long until we celebrate the 100th anniversary of D-Day, VJ-Day, and V-E Day. Wow. I'm going to see the 2020s before long! It seems to have hit me in the last few days. My neck is no longer slim and beautifully sculpted. I'vie gained weight, and my collarbone isn't very visible anymore. I still like what I see in the mirror, but now it is now the face of a woman who has been through hell, not the youthful, bright face that I used see. Age is affecting how hard it is for me to lose weight, as well. Having an irregular diet contributes to it. Well, that's all I want to say now, but I have some information links below this paragraph that you might be interested in.



To learn more about the decrease in white and gray matter in the brain of a fibromyalgia patient, click here.

To learn more about white and gray matter abnormalities in the brain from fibromyalgia, click here.

To learn about shrinkage of overall brain mass from bipolar, click here.

To learn more about how antipsychotics cause brain shrinkage, click here. Antispychotics are typically used to control bipolar, schizophrenia, schizoaffective disorder, and depresssion, among other things. They are widely prescribed for many conditions. Today it is most common to use the safer atypical antipsychotics, rather than older, more dangerous, antipsychotic medicines like Haldol (haloperidol). Examples of atypical antipsychotics are Zyprexa (olanzapine), Seroquel (quetiapine), Geodon (ziprasidone), Abilify (aripiprazole), Risperdol (risperidone), Latuda (lurasidone), Symbyax (olanzapine/fluoxetine), and Clozaril (clozapine).

Does anyone else know about any physical brain damage from fibromyalgia, Ehlers-Danlos Syndrome, PCOS, or mental illness? Feel free to comment if have information, and please leave a link to your source so I can check it out. It may end up having a blog entry dedicated to it., with giving you credit for some of the research, of course.

Thursday, May 15, 2014

Appointments, appointments, appointments...

I have a ton of appointments coming up.  I'm getting tired just thinking about them!  Next week I have my Well Woman exam (minus the PAP test, I've already done that), the week after I see my psychiatrist, and the week after that I see my rheumatologist, a genetic counselor, and have a consultation with a Fetal Medicine Specialist.  No, I'm not pregnant but my regular OB/GYN said that he wants me to meet with this doctor before I actually get pregnant.  So, that's five doctor appointments in just three weeks!  I'm going to be so exhausted after the last three, because they are all so close together.

Do you get as worn out as I do when you have so many doctor appointments right in a row?

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!