Adult with SPD in AZ

by Miranda Kay Smith
(Phoenix, AZ)

My name is Miranda and I am a 26 year old suffering from Sensory Processing Disorder. This disorder has nearly killed me, literally. Although it may not be a disease such as cancer it is very much like a cancer. If left untreated it gets worse and bigger as time goes on. If no one knows what the problem is it can not be treated. And if a disease is not treated, what is the result? I am the result.

I have had SPD since before I can remember. Only my mother can tell me when she first noticed there was a problem. She says that I would make faces and cry at the dinner table with my family when I was just a baby because of the noise they would make eating. I would only wear dresses and tights because pants and socks "hurt". My mother took me to my pediatrician after several days of going directly to the nurses office after my arrival at the grade school. The school nurse and principal told my mother that if I was that sick I must go see a doctor before coming back to school. My mother explained my symptoms to my doctor and he simply said that whatever the problem was, I would grow out of. Well, I didn't grow out of it. It just got worse and grew bigger.

In junior high school I would go to the bathroom and just cry or sit in class and whenever a noise would irritate me I would dig my fingernails into my skin on my sides. The sniffling of my classmates would do hurt me so much that I felt like hurting them but instead I would hurt myself and pretend that I was hurting them. At home, the sounds of forks or spoons on dishes drove me crazy. I would go in to my room, cry and blast my music to cover the noises. I would lay in bed at night and scream and cry because my parents were watching tv in the room below mine. I would have to make sure that the sound was completely down before I could go to bed but even after that I started to hear the high pitched noise that a tv makes when on and that drove me just as crazy.

By high school nothing had gotten better. The "disease" had grown so much and I became completely hopeless. I didn't care about anything anymore. I began hanging with the wrong crowd and was given LSD. After I took the drug I felt better than ever before. My use of LSD and other drugs lasted throughout the rest of my high school days until a narcotic conviction finally stopped me. But I still suffered from the pain of SPD.

My family and I moved from our hometown of Chicago to Phoenix, AZ. Just before I had left Chicago I saw an Occupational therapist who said that I definitely had SPD but I could not afford more than the one session. She said that my case was so extreme that I would need therapy at least 2 times a week. When in Phoenix I got on the states medical insurance. I went to an evaluation to see if I was sick enough to get coverage for the therapy I needed. I was told that it was not considered a disease and therefore they would not cover it. I appealed and got the same answer. Over the course of my teenage years I had seen a number of Psychiatrists and Psychologists. I was diagnosed with Generalized Anxiety Disorder, Bi Polar Disorder, Obsessive Compulsive Disorder- you name it they said I had it. Name a Psych medication and I have been prescribed it. Nothing helped but an anxiety medication that I have been on for over 6 years to take the edge off.

I am getting more and more sick. The disease is getting bigger. I hear the annoying chirping of birds, the constant sniffling of my coworker, the clicking of the keys on the keyboards at work. The banging of the dishes being put away at home. The sounds of food being chewed and the popping or cracking of gum. Even the sound of the blinds slapping together from the fan blowing them. All these noises hurt so bad. It has gotten to the point where even if I can not hear it, I can see it and it is just as irritating. The blinding sun. Someone chewing their food, twisting their hair- anything that is repetitive is so obnoxiously irritating and painful. My husband touching my arm makes my cringe unless I down a few of my pills. There is so many more things that irritate me that I know I am leaving out but I think you get the idea. It's everything.

I wear earplugs so often that my ears are so sore. They hurt so terribly but I have to wear them. I need help. I feel helpless and hopeless. This has gone on too long. I am not a selfish person and don't like to be felt sorry for but it is not fair! Why was I born like this? What did I do to deserve this pain and irritation every damn day of my life?? I have tried to have faith but why would god do this to me? It's not fair to my husband to have to put up with my dirty looks and the curse words that I mutter under my breath when he makes normal noises accidentally. It is not fair for those of us with SPD to have to handle this. For SPD to not be recognized as a disease is so completely ridiculous. All of us that have SPD are sick with this never ending hell that may seem like nothing or weird to others but it is what it is. It is awful. I hurt. We hurt. We as the sick people can not make ourselves better on our own. We need help. Please. I do not want the children who have just begun their journey of life to have to be like me. To never ever be fully relaxed or ever really feel happy and fulfilled. I just want to be happy. I want to feel good. I always feel bad. I don't want this disease anymore. I have prayed and begged for it to be taken from me. Something has to change. I am tired.

Physically and mentally worn out completely. I don't want to have to try to stick it out the rest of my life. Everyday I live for my children, my husband and my family. I just don't want to have to just deal with it anymore or just stick it out anymore. I will not give up and will not live like this!

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Mar 17, 2013
Any Suggestions?
by: Anonymous Arizona

Hi everyone... I can so relate to some of the comments... does anyone know of a therapist occupational or otherwise, in the Phoenix AZ area that works with adults with SPD?

Dec 27, 2012
Sensory Defensiveness
by: Anonymous

I have Sensory Defensiveness to all 5 senses.

Anything squishy feels like suffocation. Anything gooey or slimy feels colder than ice. Anything soft on my skin feels like i'm getting serious burns and scalds.

I cannot hold a Kooshie ball without it's rubber strings poking my hands like sharp needles. I cannot walk on any texture without it hurting me.

Rocking motions can't help me because I can't even notice them. The Willbarger brushing protocol scares me half to death just thinking about it.

This is just the sense of Touch. I have four other senses that are oversensitive.

I am also self-abusive and I hit myself as hard as I can, poked the palm of my hand with a pencil until I had no feeling in my hand, and had a priority of killing myself.

Dec 25, 2011
Why won't it stop?
by: just__one__me

I really am so sick of living like this. I was diagnosed with SPD when I was 9; I am now 21. We tried therapy. A lycra 'cocoon' helped, but the brushing made me cry.

Nearly everything seems to bother me to the point where I either feel like I am literally going to explode, go crazy and start running around and screaming, or fold in on myself and implode.
Light touches 'hurt.' If something/someone touches a part of my body, I must scratch/firmly rub that area and the corresponding area on the opposite side of my body. Clothes must be tight. Wind bothers me. Feather are torture. Sometimes I want to rip my skin off because it is 'touching' me. Life hurts. I'm continuously uncomfortable.

I can only remember two instances in my life where I felt completely comfortable. One was when I was learning to use SCUBA equipment an was underwater, perfectly buoyant, 'weightless,' and still. Unfortunately, the feeling (or lack thereof) only lasted for a split second.
Seeing movements bothers me, as do lights, sounds, textures, and activity around me. Being in stores is overwhelming. I usually seem to be cold, but when the air is too hot I feel as if I am suffocating. Falling asleep has been a tremendous challenge since I was a few months old. My mind and heart rate won't slow, and it is incredibly difficult to get comfortable; everything is touching me and is uncomfortable. I have to toss and turn. I have to move or I feel I'll scream.

I become so easily overwhelmed. The quickest way to get out of it is one I cannot recommend: self-injury through cutting. The sharp pain seems to help reset my body and allow me to function again (it doesn't always work nor does it usually completely 'reset' my system). Having someone 'squish' me helps, but to a smaller extent.
The overload I frequently face sometimes seems insurmountable and hopeless. I try to cope, but it is just so difficult.

While it is nice to know I'm no alone, I wish none of us had to deal with this debilitating disorder. God, help me.

Jul 23, 2010
me too!!
by: Anonymous

wow...I am so grateful having just been diagnosed at 44.. I really thought I was the only one in the world with this...well except for my mother who I am pretty sure has it too...Only up from here

Oct 29, 2009
by: nicole

I am in tears right now after reading your post. I am at the end of the circle again, as I call it. My life seems like a never-ending cycle of these awful circles. It starts with something positive...I overcame a fear, had a good therapy session, or gained some new insight into my life (although I forget quickly) Then begins the journey 'round, the downward spiral that leads me to this all too familiar place. This place where I am so overwhelmed with life and the world around me. A place where I become convinced that I was just not meant for this world. After all, life shouldn't be so hard.

I want to relax. I want to be happy go lucky. I want to go to school...I hunger and thirst for knowledge, but I seem to lack the tools necessary to achieve these luxuries of life. Why don't I seem to "get it" and why doesn't anyone see the confusion and pain that plague my world.

I've seen therapists and many psychologists, but like you, have been (what I feel to be) misdiagnosed over and over again...a guinea pig for the newest upcoming psych med. Each time I see a new psychiatrist in hopes that will discover the root of the problem, my hopes are crushed as I refuse each drug they offer, as they have all failed me in the past. Like you, anxiety medication was the only thing that takes a bit of the edge off, but even that they now deny me in fear of dependency.

I have been diagnosed with ADHD and am now on medication for that; however, although it has helps control my impulsivity (if thats even a word =) and my ability to focus (combined with a lot of self-discipline), I seem to be overly sensitive in so many other areas. Areas that have always been a problem in life, but I am now noticing as I struggle to keep up with life.

I am a twenty-eight year old, single mother of two amazing children. Both of my children are showing signs of attention disorder and/or learning disabilities. Through my observations, and my search for answers,I have stumbled across this website. I feel like this is where I belong. It is frightening how many symptoms I have, how intense they are and have been since as early in my life as I can remember, and the impact it has had on each and every area of my life. I don't know what to think right now. I am at a place where I want to give up. I feel hopeless that I will ever find answers to the questions of who, or better yet, 'what' the hell I am. I feel like living with whatever plagues my body is just too much. I hate feeling the way I do...and I'm scared that noone will ever hear me and what I am trying to say.

But now I know that there are others out there that not only sympathize with me, but empathize as well. It is refreshing to be understood in a world where I feel so out of place. Thank you for sharing. I apologize for rambling...I have a very heavy heart, and no one who cares to help me find my way

Jun 04, 2009
know the feeling
by: Sandee

I think these symptoms begin as a child and are probably more mild. If not corrected they manifest in us and as adults they become worse. i have the issues with sound, whispering under my breath about the noise of someone eating or scraping the silverware on the plate or on their teeth. so many sound irritate me. rustling sounds. I feel like I'm being a jerk. I hate light including the sun. I always joke that I'm a vampire. I hate the way certain things feel. Certain sounds and the way some things feel make my teeth hurt. I am a very picky eater. My mind races at night so I do not sleep well.

what you were saying about the TV volume when you are trying to sleep and gum chomping and cracking, drives me insane. Hearing someone crunching on hard candy or chips, etc. had to take a battery out of a clock from the ticking and there is a bird that I've been threatening. it never shuts up. i could go on forever with more than the sound stuff.

Just wanted you to know, I know exactly what you mean.

Apr 12, 2009
a friend who cares
by: Anonymous

I am so sorry. I have a child who is showing signs of this and my husband struggles with it as well. Certain tones of voice drive him crazy and the sun is blinding to him. We prayed for you. We know God does heal our afflictions. He has gotten our son through alot so far. Please don't give up. I know for me the sound of balloons rubbing is excruciating to the point I have a phobia of them.

God bless you and heal you in Jesus's name.

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