My Journey With:

Hypermobile Ehlers-Danlos syndrome (hEDS) ~ Postural Orthostatic Tachycardia Syndrome (POTS) ~ Focal Impaired Awareness (Complex Partial) Seizures ~ Fibromyalgia ~ Chronic Myofascial Pain (CMP) ~ Polycystic Ovarian Syndrome (PCOS) ~ TMJ Dysfunction ~ Bipolar Disorder Type I ~ Migraines ~ Obsessive Compulsive Disorder ~ 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) ~ Painful Piezogenic Pedal Papules ~ Hashimoto's Thyroiditis ~ Irritable Bowel Syndrome (IBS) ~ Seasonal Affective Disorder (SAD) ~ Multiple Phobias ~ Chronic Headaches

Friday, November 26, 2010

Lightbox Time

Tomorrow I plan to start my light therapy for my Seasonal Affective Disorder (SAD).  I really hate doing it, even though it isn't hard at all.  I just hate sitting in front of it; plus it gives me a headache.  I do believe it would be worth it, though, if I could stop cycling my moods into depression.  Lately I'm been cycling fast, with periods of semi-depressed to periods of very, very depressed.  I've been sleeping a lot and I cry all the time.  I really don't see the reason to get out of bed anymore, but I'm trying.  I really, really am trying.  My struggles with bipolar, SAD, Complex-PTSD, and my daily struggles with self-injury are something I don't typically talk about much.  Though I rarely self-injure anymore, I do struggle with it still.  I've been a self-injurer since I was 14.  In nearly every case of self-injury, especially cases that involve years of self-injury behavior, are a result of trying to cope with abuse.  My case is no different.  While it seems acceptable to have physical disabilities, mental health disabilities is still very stigmatized.  I struggle on a daily basis with both the physical and mental health issues I have.  I am lucky that I do know most of my triggers for flashbacks, depression, and mania.  Of everything the bipolar depression and flashbacks are the worst.  So, the depression, anxiety, and flashbacks are my biggest problems at the moment.  I wanted to show a picture of my lightbox on and off, and then take a quote from Mayo Clinic's article on light therapy.  I also want to mention that my lightbox is 10,000 lux.
Light therapy is a way to treat seasonal affective disorder (SAD) by exposure to artificial light. Seasonal affective disorder is a type of depression that occurs at a certain time each year, usually in the fall or winter.
During light therapy, you sit or work near a device called a light therapy box. The box gives off bright light that mimics natural outdoor light. Light therapy is thought to affect brain chemicals linked to mood, easing SAD symptoms. Using a light therapy box may also help with other types of depression, sleep disorders and some other conditions. Light therapy is also known as bright light therapy or phototherapy.

Thursday, November 25, 2010

Emptiness

Each day I'm emptier and emptier inside.  Today if it wasn't for DH getting his feelings hurt I just would have stayed in bed all day.  I just don't see the use of getting up.  I mean, what for?  Why would I care to get out of bed?  I just want to lay in bed, staring at the ceiling, with my mind millions of miles away.  I want to be millions of miles away.  I don't want to be me, I don't want to live in a broken body with a mind in danger of breaking at any moment.  With so many people in the house the only way I've been able to cope is to "shut down" a part of myself.  I feel like more and more of me is shutting down without my asking.  I'm not even sure that's a bad thing.  I just want to cease to exist sometimes.  Each day the wind howls through my soul, yet it doesn't blow away the clouds of mist which shroud myself from even me

Saturday, November 20, 2010

"Cat"











"Cat"

What crosses a cat's mind?
Chasing fuzzy red mice,
sleeping in the sun.
That's what a kitty things about.

What does a cat dream about?
Warm milk and full tummies,
chasing fast grasshoppers.
That's what a kitty dreams about.

Why can a cat jump so high?
Strong little kitty feet with ears pulled back,
wondering what is up there.
That's what kitties jump for.

What is a cat like?
Angle paws and soft tails,
sunning furry bellies, giving kitty kisses.
That's what a kitty is like.

by Lady of the Ozarks (myself)



Thursday, November 11, 2010

Lack of Patience with Apathetic Bitches

“Lack of Patience with Apathetic Bitches”
Saturday, November 06, 2010
9:06 pm

Sometimes I know I’m just supposed to smile and take it when someone is an apathetic bitch but I’m angry.  I’m angry that my life has been ripped from me and into the arms of PAIN, who devours me, regurgitates me, and then devours me all over again each day.  I live in fear, so, so much fear.  Would life be worth living if the pain never gets better?  What is the point at which life is definitely not worth enduring any longer?  

God forbid someone in agonizing pain finds pain relief!

Two days ago I went with DH (Darling Husband) to the dentist.  He said he wanted me to go back with him in the room when he talks to the dentist to see what the dentist has planned.  It was a really bad pain day for me; when we were halfway down we had to pull over and DH put both my ankles back in.  So when we got there and the dental assistant led us back to the patient’s room I sat down one on the stools.  She said that one stool was for her and one was for the dentist.  Oops, okay.  I asked her if I could have a chair because DH wanted me with him while he talked to the doctor.  She said no.  By this time I was crying in pain from the short time I’d been standing.  I was hoping snot wouldn’t start running out of my nose when I pleaded again to have a chair.  Again she said no.  By this time the snot was running down my face while I wiped at it the best I could.  It was hard to do while wearing glasses and crouched over, grasping at my cane as if my life depended on it.   I asked her once more and for a third time she said no.  That time I’d explained about my ankles.  At this point she turns around without saying a word.  The dentist walks in a minute later and I beg him for a chair because Jim wanted me to be there just to hear what the dentist had planned for his teeth.  I don’t think DH said anything at all during this whole thing.  I felt really stupid by then, but dammit, DH told me he wanted me there and until he said different I just wanted to hear what the doctor has planned for his mouth.  At that point I burst into tears hard;l the pain was excruciating and I started making this bizarre hiccup noise when I tried to stop sobbing.  DH told me to go back to the waiting room; the dentist already said what I needed to hear anyway.  I felt so stupid.  I mean here I am demanding a chair to this apathetic bitch and I should have just stayed in the waiting room or in the car.  When I got back to the front the receptionist told me that I shouldn’t have walked back there if I couldn’t stand.  I was making my way slowly toward a seat in the waiting room and crying my eyes out from pain when she said this.  I couldn’t help but say “If she could have gotten me a chair that wouldn’t have been a problem.”  When I said that statement she got up and walked quickly away.  What is it with these people? 

That night DH told me (and I don’t blame him) that I need to be careful to not cause people to get mad at me and thus him when the doctor is going to have his hands in DH’s mouth.  I completely understand, but for some stupid reason I felt ashamed, embarrassed, and confused; not to mention guilty.  I’m going to stay in the car next time.  At least there I can lay the seat back and not have to face any apathetic bitches. 
Oh, and I thought I’d mention that 1) I really want to have a wheelchair for times like this, and 2) the dentist office is not wheelchair accessible at all. 

Living in Pain

“Living in Pain”
Sunday, October 31, 2010
3:46 pm

**WARNING: COULD BE A TRIGGER TO SOME PEOPLE***





I am so tired of living in pain.  What does someone do when the pain won’t stop?  I’ve actually found myself wondering if it hurts to die. It can’t hurt worse than this.  I’ve even thought about slicing my wrists as a last resort.  No, I’m not suicidal, but I have to admit that when I really hurt I sometimes think about it.  The pain is constant, never ending.  I have endless ways to describe my pain.  I hate it.  Pain has invaded my body and set up residence throughout.  I want to bleed it from my body, let it drain out.  I just wish I knew how.

I’m so tired of living in pain. 
the pain won’t stop
the pain won’t stop
the pain won’t stop
Does it hurt to die?
Will a razor blade be quickest?
Will the pain even be noticed?
My body, my nerves, my cells
scream in fiery agony,
overpowering the sound
of my blood in my veins.
I can’t go on like this.
I can’t live like this forever.
the pain won’t stop
the pain won’t stop
the pain won’t stop
It’s invaded my body,
set up residence,
slowly destroying my life.
Can it even comprehend the damage?
I hate this pain,
I want to cut it out,
rip it’s roots from me.
the pain won’t stop
the pain won’t stop
the pain won’t stop
What if it never stops?

I want to repeat, though, that I am not suicidal and haven’t been for many, many years.  The feeling that comes with being suicidal; the emptiness, the endless pain, the knowledge it won’t get better and the incredible fear, are present.  Any wish to act is absolutely not there, and DH if you are reading this you haven’t anything to worry about.  There, just wanted to add that disclaimer there.

Remember, if I can’t write my feelings on my blog I’d rather just not have one, so please blog readers, don’t get upset.

When it rains it pours…or leads to hurricane!

“When it rains it pours…or leads to hurricane!”
Friday, October 29, 2010
3:46 pm

When it rains it pours…the rain leads to a hurricane…then leaves deathly flooding.  I think that about sums up the last week.  My mother-in-law (MIL) was in the hospital since last Sunday; which was the reason for our visit to Springfield.  We got there Monday.  We were surprised at how sick she was.  I knew from the phone conversations with my brother-in-laws (BILs) that she was really sick and could be on her deathbed.  Even though we knew what to expect it was entirely different seeing it with our own eyes.  There were times she was incoherent and I was really worried.  Then once she did her breathing treatment she was a bit more like herself.  That shows what lack of oxygen can do to the body.  My Aunt Gloria had hours of severe oxygen deprivation during her bout of lung cancer.  She has never been the same sense.  Now she acts like she’s had Alzheimer’s for years.  She’s been like that for ten years.  The doctors warned my cousins that after she woke up from the coma she may start acting as if she had Alzheimer’s even though she didn’t.  I hope nothing happens to my MIL like that.  From how she sounded in the hospital I afraid that her situation will be the same as my aunt’s.

I used a wheelchair the whole time I was in the hospital visiting my MIL.  I can’t walk very far at all with my cane, plus I went into another flare.  The first wheelchair I used fit perfect.  Then we went back to BIL #1’s and BIL #2’s house.  When we went back to the hospital my BIL #1 gave me a larger wheelchair.  That one was hard to maneuver because it was so big.  I couldn’t push myself far at all because of my wrist pain and both wrists subluxate very easily (usually 4-6 times a day).  I’m just glad that my wrists don’t dislocate (yet).  The second time I came back to the hospital after going to get BIL #1, BIL #2, and BIL #2’s wife, I got a wheelchair that fit perfect again.  I wish I could have taken one home.  I could push myself in the small ones just a little, while I couldn’t push myself in the big ones at all.  It would be really nice to have my own chair that fit me.  I have a pen pal whose boyfriend got her a wheelchair off Amazon.   I wonder how much it costs. 
I saw all of MIL’s children that were there break down and cry during her hospital stay, including her daughter-in-law, me.  I really love DH’s mom.  (By the way “DH” stands for darling husband.)  We ended up staying four days and three nights.  I’d only been out of a flare for a few days, so I went back into one in the flare.  I almost (DH doesn’t know this) asked DH to push me down to the ER because I was in so, so much pain.  I was so afraid to take any attention toward myself because, well, my MIL was dying down the hall.  I cried and cried I hurt so bad, but I was lucky enough to not draw too much attention.  I don’t think that anyone realized I kept crying in pain except for one older lady and maybe a couple of times I couldn’t hide it from DH.  I felt so guilty, but my mind and nervous system were filling full of pain signals.  I didn’t want DH to have to give me any extra attention but he later told me that taking care of me was helping him.
My MIL ended up going to a nursing home.  They still have a lot of work to do, but I really feel that it is the best situation for her, because I can’t bear to think of my DH’s mom dying.  I don’t really have a mom anymore and in a way I think that makes me love her even more.  All Jim had to tell me long ago was that his mom and BIL #1 were awesome and I loved them just because he does so much.  My MIL, BIL #1, BIL #2 and his wife have made me feel welcome and like family.  It means a lot, especially when my own family doesn’t feel the need to treat me like a human being. 

By the way, hospital food not only sucks, it’s also really expensive.

Is the ‘W word’ really that bad?

“Is the ‘W word’ really that bad?”
October 22, 2010
2:26 pm

I’m looking out the window and I can see some teenage boys tossing a ball around in the street.  I am ashamed to find myself jealous of these boys.  I used to move like that.  I used to toss a football, run in track & field, jog in the mornings, throw discus and shot put, think nothing of being tackled in a friendly game of football, walk barefoot to the park…  The thing is that when I did all of these things I didn’t appreciate my ability to do so.  Am I out of shape?  Definitely.  That isn’t my problem though.  The pain and loss of balance are my hurdle.  I would, though, love to be that way again.  I notice myself flinching when the boys catch the ball, as if it was aimed at and caught by me. 

I’m feeling a bit melancholy, usually I try to have an excellent outlook on life, but today it is really hard for some reason.  DH seems keep telling me I will be in that shape and in a lot less pain again soon.  I feel like if I don’t then I will be greatly disappointing him.  I know he doesn’t mean it that way, but that is how I feel. I have accepted the possibility of being in good health again as well as the possibility of a wheelchair, and of course anything in between.  I can usually look forward to each day knowing it could be better than today, but lately I feel like a failure because I can barely walk and must use a cane.  Sometimes I need both my cane and DH to even help me to the bathroom.  Every time we have a talk about my future health I just want to cry because we’ll have the same discussion once again.  The doctors said that there is no possibility of me ever being in a wheelchair but then again most of the doctors I have seen are quacks, yet DH believes them, asking each doctor to tell me I will never be in a wheelchair.  Right now I just want to be happy and whether it will happen or not isn’t a big concern for me.  I’m too busy trying to get through today.  I was very afraid of what would happen when I was first diagnosed with EDS.  I am happy knowing that whatever the future brings I can handle it, no matter how good or bad my health gets.  What DH is so afraid of is that I’ll no longer want to try and the whole wheelchair thing will be a self fulfilling prophecy.  The thing is, I feel best knowing that I am doing my best, rather than trying to avoid mentioning the “W word” and worrying about what DH will think of me if I fail.  He said that he doesn’t care that I’m disabled because he loves me very much.  I just feel like if he’d accept that whatever the future brings we can handle and that life does not revolve around negative prophesies but rather positive ones  (and that I am aware and know all of this) then we’d both be at ease.  I try my best, I clean house while I am often crying in pain.  I try my best, I really do.  I don’t like being afraid of failure, when in my eyes it isn’t even a failure.  I’d like to get a wheelchair for when we go on trips and so that I can go outside more than a few feet away from the car before hobbling back in extreme pain.  I’d rather use one once in awhile for long distance walking to save the energy levels I have and to reduce my pain.  If I got a “W word” I’m afraid DH would see it as throwing in the towel and that I gave up.   That is the opposite of how I feel.   I feel like I’d be saving some spoons so that I can use those spoons later.  I thought about having DH read my blog but I think he’d still see it as me giving up.  I wish I could make him understand but every time one of us brings up the subject we both fight.  He talks a lot about whether my EDS causes me pain or not.  He thinks my pain is just fibro pain.  I’ve tried telling him that fibro and EDS cause the constant, unrelenting pain.  I’m not sure if fibro or EDS cause the worst of my pain, but I do feel it’s likely that they work together to cause it.

I’ve been so lonely lately.  I can’t talk to my friends online because I have no internet. (I’m typing this in Word to put into my blog when I can get online.)  I can’t hear from my pen pals because I can’t mail the response letters I’ve written because we don’t have the money for postage.  I feel so very alone.  I’ve been watching some movies and trying to lose myself in books.  It only works some of the time.

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