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)

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"

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.

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

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)
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!

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!

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?