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Posted on: Sat, Jan 26 2008 2:56 AM

Posted by: AshiyaKiecite Posts: 2

Hi..

I haven't introduced myself on the Newbie board yet, so I'll need to provide that info here to properly phrase my question. And sorry it's going to be so long, but I have trouble shortening first posts without putting the topic in.

So.. I'm 25yo, live in NY State (not the city) and I have a variety of problems: Complex PTSD with fear of strangers, crowds and people getting too physically close, and males.. Social Phobia with poor Conversation Skills and Selective Mutism.. DID.. Depression.. Cutting and very occasionally suicidal ideation. Severe Asthma with extreme chemical and environmental sensitivity.. Seizures and tics.. hypoglycemia, arthritis like symptoms in my knees, elbows, wrists, and hands.. and Sensory Issues.. In addition, I have like no real sense, apparently.. I can't figure out how to handle finances or fill out forms for services or understand things like leases and insurance and nutrition and stuff..

Some combination of the above combined three years ago to keep me indoors a great deal and led to Agoraphobia. 

I've been on SSD and Medicaid (and am now also on Medicare) since the required wait after that..

My therapist stopped being able to see me due to logistical issues over a year ago. 

I only have one person I really interact with (poor him) and we named him my power of attorney/health care proxy since he's been helping me navigate all the red tape and such and FINALLY I was given a case manager from a Mental Health agency appointed by the county I live in.

Unfortunately, she doesn't seem to be familiar with the problems that I am having.

1.  I am unable to talk on the phone to anyone but the one friend.. and sometimes not even him.. Even in person I have trouble with new people, upsetting topics/times, and such.. I have been getting around this by writing/emailing/IMing.. even using the phone keys when I need to respond to someone via phone (once for yes, twice for no type thing)   My CM says that she doesn't have email access or IM or text messaging so the only way I can contact her now is through my friend.. I have to have him call her, and she calls him to speak about me. I've tried to convince her to call me and leave a message on my phone and I would listen and then respond via i711 (TTY online).. but she says that I'm not allowed to call her via TTY..  After much fighting with her on this (mostly my friend doing the fighting and me being depressed because nothing was getting fixed), she agreed to put in a grant request to get text messaging on her work cell for six months.. but that won't even be considered for weeks yet.

      She has been trying to manage getting me a new therapist, and the center that has programs that best suit me says that I need an intake appt first. They want it via phone. My CM says that she will not approach them about doing it via TTY (which is the only way that I can see me being able to do it) because I am not hearing/speech disabled and therefore need to simply try harder and push myself further.

      I'm convinced that the center, being a major organization in my county, would allow me to use the TTY, but she won't even bring it up to them. She also gets very upset when I am unable to talk and end up writing everything to her during our in person meetings.

     Am I wrong in this?
 

2 .  I have been largely unable to leave my apt for three years, and have been without a therapist for one.. I am only allowed to see my CM once a week, and more than half of those get taken up with appts to medical doctors and social service required appts for medicaid and such.. She refuses to talk about other things on days we do those appts. I really want to get better and get better as fast as possible. I know that everyone keeps telling me just give it time.. but I honestly feel that certain problems like the agoraphobia and well all the phobias/anxieties.. only get compounded with time.. Unless I'm able to actively work on them and getting better, they seem to only get worse.. Plus all the downtime alone and stuck indoors just adds to my depression..

      I keep trying to convince her that what would help me the most would be if she would stop taking me to all the appts and spend some of her time (she has very little time when not specifically with me to work on my case) working on finding me other people to handle things.. I thought she was a case MANAGER, not the primary person that's supposed to do everything.. Lately she's been trying to be my therapist and work on my trauma and DID issues And work on getting me outside and to places to work on my phobia/anxiety issues.. all in the same session every three weeks..

I have a vague idea of what would best help IMO.. but nothing at all to back it up or even the real terminology for it..

I want someone to help with the DID/PTSD issues.. I figure that's the Therapist..

I want someone to help with the selective mutism, conversation skills, and possibly some of the social phobia, which the fews things that have really helped on that have been from social skills practice books for people with Autism and Aspergers..  I'm not positive, but I think that might be a speech/communication therapist..

I want someone to help me with understanding things like finances and nutrition and cooking and insurance and forms and all that.. I know from experience that when I go through each step involved and understand it in baby steps with knowing exactly what to do and what to do if this goes wrong or that happens or that changes.. when I go through those with someone repeatedly until I know exactly what to expect and what to do and can run through it in my head, I can manage that type of thing.  I'm not really sure who helps with that.. I've come up with anything from occupational therapists ro life skills coaches.. 

I want someone to help me with the phobias/anxieties.. like actually going and working on them with me a bit at a time and assigning me homework to practice and stuff.. at least until I'm able to manage a phobia/anxiety or social anxiety support group, which seems to be the preferred method around here.. I'd be okay with a regular therapist working on it.. but I've been told that I cannot get a therapist to work on both the DID and PTSD issues AND the phobia/anxiety properly.. that they prefer o focus on one or two things at a time..

I want someone who can accompany me to medical appts and on Para Transit (I can't manage the regular buses right now, I can't even manage THESE without someone with me) at least until I get familiar enough with it that I can manage on my own mostly..  It was my understanding that there are assistants/aides or some type that might be possible to do this with..

 I just feel that working on a lot of the issues at once and working with maybe 6 people a week is better than me only being able to spend one hour a week working on getting better and the rest downtime that I spend mostly depressed and frustrated and worrying about everything and stuff..

My CM says that unlike people with physical or cognitive disabilities, she doesn't think that people with Mental Health Issues are able to have more than one treatment provider at a time..

I don't know.

I think I can make a good case for each of these and it would help me get better so much faster.. and isn't that like the point? to get me functional again? Can I have more than one person helping me? 

And honestly, I'm really depressed and tired of all of this.  I just want to get better.. and yeah, I don't really know how on my own.. but I know what I'm the problems I'm having are.. and I know some ways to deal with some of it.. like writing or typing or using a tty or communication board or ASL to communicate because I can do it with any of those.. I just can't make my stupid mouth and throat cooperate most of the time. 

 like begging my friend to allow me to use a walker (the rollater kind with the seat) or manual wheelchair when he has to make me go out someplace that might be crowded.. it makes me feel safer to have the frame around me and it does help with the joint pain.. though the only times he's willing to let me do it are when I've been in so much physical pain that I can't make it down my stairs without crying..

 i look up things for people with other disabilities who are having the same problems.. likethings to handle the sensory issues (earplugs, headphones, a DSLite to focus on.. things to let my hands play with to keep the stimming more under control.. a solid color dark blanket to put over me when I can't stand the visual overload anymore.. weighted pieces for my arms, shoulders, and back of neck for when I need deep pressure..  i use workbooks for people with learning disabilities to understand things in a way that breaks down enough for me to really grasp it.. I recently managed that with medical care/health.. and it worked pretty well I think.. 

Is it reasonable to expect to be allowed to utlize things that are available to people with other disabilities if using them would help me in some of the same ways and would allow me to achieve functionality that much faster?

I mean, I know that using a TTY or communication board or ASL isn't going to help with the social anxiety/mutism issue.. I still want to work on things even if I find a way to manage for now.. I just..  

Alright, I'm done with my rambling/whining/ whatever this counts as.. 

 Sorry, I knew this would be ghastly long, and it is..

And if you actually read all that, thanks.. 

Ashiya 

Posted on: Sat, Jan 26 2008 6:49 AM

Posted by: randyswife Posts: 7

Hi Ashiya,

My name is  Angi, and I am very new to this site. First time on was today. I had read your letter, and I am very concerned for you. I have so many thoughts on this but I have limited time to write everything I would like to say since  I need to get ready for work soon.

I understand your frustrations with the systems and I have been there alot. I really feel that to help you with your social aniexties and phobias it has to come from within.  Or having a trusting friend to help you through this. I have always had social aniexties, always afrriad of people and what they thought of me but I have overcome this fear.  I have spina biffida, and I work as a manicurist  go to  college fulltime and have a wonderful husband, I never thought in a million yrs that I would be doing all of this in my life. Especially considering how I grew up feeling all the time. I really think you need to get away from the TTY thing.  You have to find the strength within yourself and stop hiding behind your fears. We all have them, some more severe then other for sure.  Have you ever tried medications for your aniexty? I take meds everyday for this and if I did not do this I would be hiding in my house and never be able to work or anything. I even lost a job because of this and I was so depressed that I hid in my room and never came out. You have to leave your comfort zone if your really wanting not to be depressed any longer. I know longer have a safe place.  My safe place is within my heart now.

You have listed so many different issues you have, most by abbreivations. can you please tell me what these are? if you need to contact me you can do so at honeydo89@hotmail.com.  I need to go for now. I will write again later this afternoon. take care and keep your chin up. things will get better. angi~

Posted on: Sat, Jan 26 2008 9:24 AM

Posted by: wendy50ech Posts: 47

GOD BLESS YOU, I THINK YOU ARE GOING TO BE VERY HELPFUL TO HER.

Posted on: Sun, Jan 27 2008 3:08 AM

Posted by: AshiyaKiecite Posts: 2

Hi Angi.

Thanks for responding.. 

While I do appreciate your response and thoughts on the matter, I'm not sure how applicable the advice is in my situation.

I understand that some confusion can stem from people not having a real knowledge about the various psychological disabilities.. particularly things like anxiety and phobia disorders.  Thus I'm going to assume that wasn't meant to come across as.. fluffy and bordering on unfair as it did..

So I really do appreciate your response, and I'm glad to hear that you were able to overcome your anxiety issues.

Unfortunately for me, its not that easy. I assure you that I want to be able to walk out my door any time I choose; to call up the friends I had before it spiraled downwards; to visit places the way I had planned to; to attend college; even to work and volunteer like I used to.

It isn't a matter of me pulling up strength from inside, or just 'stop hiding behind my fears' and such..

Social Phobia and Complex PTSD are not just mind over body conditions. Complex PTSD has caused me intestinal and stomach ulcers, caused a relapse of my seizure disorder, causes chronic pain and fatigue, and headaches that leave me in bed for days. With selective mutism for instance, in my case, I have a real physiological response where I cannot speak and have actually both damaged my vocal cords and caused myself serious asthma attacks by trying to physically force myself to speak when everything in me was screaming that I could not.

I have a disability that at this time in my life is truly limiting and disabling.

This is compounded by the fact that I'm not allowed to get therapy (which by the way means no meds) unless I do something that I literally cannot do (talk on the phone without an assistive device)..

---------

I do not know your particular level of disability and such.. so please don't be offended by the analogy I'm about to make. Its simply the best way I know to explain to most people what this situation is like for me.

To me, this is similar to someone who has been paralyzed from the waist down in a way that is not permanent, but will take intense, painful, long-term therapy and medication if they are going to be able to overcome it. 

Now imagine that person laying in a hospital bed after waking up for the first time to this scenario..

a nurse comes in and gives them their prognosis.. and says.. okay.. there is doctor that will help you get better three building over..

All you have to do is get there.

No, sorry.. we can't give or allow you a wheelchair or any assistive devices or even advice to get there, because that would be a crutch, and if you want to get better badly enough, you will find a way to get to the doctor. 

Most people would find this completely ridiculous..  But to me, that is precisely the equivalent of what is being asked of me.

 ----------

That I somehow get better so that I can get therapy. 

Now I know that you meant nothing of the sort. And I really am happy that someone at least responded, even if it did exasperate me slightly.

 Again, I suspect it just boils down to a lack of understanding of mental health issues..

Anyway..

Again, thanks Angi and Wendy for your responses..

and if anyone has any answers or comments for me, please write away.

I promise to try to write far less lengthy and hopefully less frustrated responses..

 Ashiya

Posted on: Sun, Jan 27 2008 10:50 AM

Posted by: randyswife Posts: 7

Hi Ashiya,

How are you today?  My name is Randy.  I am Angi's husband.  I read what you wrote, what she said to you and your response.  I think I can help.  I understand where you are coming from.  You are being asked to do things that to you, are impossible to do.  What would you say if I was to tell you that those things are not impossible and that I can give you proof?  Would you like me to try and help you?  If so, please respond and we will take it from there.  Randy

Posted on: Sun, Jan 27 2008 2:59 PM

Posted by: Kara Posts: 2,278

AshiyaKiecite:

My CM says that unlike people with physical or cognitive disabilities, she doesn't think that people with Mental Health Issues are able to have more than one treatment provider at a time..

You have many many issues to think about so I think it might be helpful (at least to me!) to address a few individually....

I'm Kara, by the way:-) WELCOME to Disaboom! I have a physical disability but I'm finishing my PhD in clinical psychologist. I work as a therapist in an inpatient and outpatient psychiatric unit of a Children's Hospital right now. I think your CM was referencing the fact that many, probably most, therapists will not see you if you are also seeing another therapist. This is because the therapeutic relationship is a very unique one and it's confusing for both patient/client and therapist if you are seeing more than one person---their approach, expectations, and support are bound to overlap and differ so it just gets complicated. This has become a policy for many because patient's have a tendency to "split" their therapists--meaning tell one some things, another some other things....Also, there are usually times in the therapeutic relationship where your therapist might tell you something that is hard to hear. If people have more than one therapist, it's tempting to just leave that one and side with a therapist who hasn't confronted them (yet).

That being said, it would be challenging but toally possible (depending on your area) to find someone who has experience/knowledge in all the concerns you mentioned. For the clearly OT/PT type things you mentioned, it's entirely appropriate for you to use those services in addition to a therapist as long as they are treating physical issues (like pain, throat/mouth functioning, etc.). It sounds like that would be a good addition to your treatment because you'd have the opportunity to receive training and get to practice these skills in a way that you might not get to with your therapist. Course I know all these suggestions are further complicated by the challenge it is for you to get out of the house and then if you live in a rural area-it'll be even harder! I wish you the best and hope you'll continue chatting here at Disaboom!

Disaboom moderator


My personal blog: If the World Had Wheels

Posted on: Sun, Jan 27 2008 4:00 PM

Posted by: AngelsWalk Posts: 1

Ashiya,

Good day to you.  My name is Amy.  I'd like to share a prayer that I learned today.

From my heart to yours..  for I am trying everything I can to heal.  Tho I have doubts and tears in my eyes, I know in my heart I can heal.  I hope that you will also.

These are prayers written by author Don Miguel Ruiz..

'Please take a moment to close your eyes and open your heart, and feel all the love that is coming from your heart.

I want you to join me in a special prayer to experience a communion with our creator.

Focus your attention on your lungs, as if only your lungs exsisted.  Feel the pleasure within your lungs, expand to feel the biggest need of the human body. to breathe.  Take a deep breath and feel the air as it fills your lungs.  Feel how the air is made of love.  Notice the connection between the air and lungs, a connection of love.  Expand your lungs with air.  Then exhale, and feel the pleasure again.  When we fulfill any need of the human body, it gives us pleasure.  To breathe gives us pleasure.  Just to breathe is enough for us to always be happy, to enjoy life.  Just to be alive is enough.  Feel the pleasure of being alive, the pleasure of the feeling of love...

PRAYER FOR AWARENESS

Today, Creator of the Universe, we ask that you open our heart and opne our eyes so we can enjoy all of your creations and live in love with you.  Help us to see you in everything we percieve with our eyes, with our ears with our heart, with all our senses.  Let us percieve with teyes of love so that we find you wherever we go and see you in everything you create.  Let us see you in every cell of our body, in every emotion of our minmd, in every dream, in every flower, in every person we meet.  You cannot hide from us because you are everywhere, and we are one with you.  Let us be aware of this truth.

Let us be aware of our power to create a dream of heaven where everything is possible.  Help us to use our imagination to guide the dream of our life, the magic of our creation, so we can live without fear, without anger, without jealousy, without envy.   Five us a light to foloow and let today be the day that our search for love and happi8ness is over.  Today let something extraordinary happen that will change our lives forever:  Let everything we do and say be an expression of the beauty in our heart, always based on love.

Help us to be the way you are, to love the way you love, to share the way you share, to create a masterpiece of beauty and love, the same way that all of your creations are masterpieces of beauty and love.  Begining todayand gradually over time, help us to increase the power of our love so that we may create a masterpiece of art-  our own life.  Today, Creator, we give you all of our gratitude and lvoe becuse you have given us life.  

PRAYER FOR SELF-LOVE

Today, creator of the universe, we ask that you help us to accept ourselves just the way we are, without judgement.  Help us to accept our mind the way it is, with all the judgement.  Help us to accept our mind the way it is, with all our emotions, our hopes and dreams, our personality, our unique way of being.  Help us to acfcept our body just the way it is, with all the beauty and perfection.  Let the love we have for ourselves be so strong taht we never again reject ourselves or sabotage our happiness freedom and love.  

From now on, let every action, every reaction, every thought, every emotion, be based on love.  Help us, Creator, to increase our self-love until the entire dream of our life is transformed, from fear and drama to love and joy.  Let the power of our self-love be strong enough to break all the lies we were programmed to believe-- all the lies that tell us that we are not good enough, or strong enough, or intelligent enough, that we cannot make it.  Let the power of our self-love be so strong that we no longer need to live our life according to other peoples opinions.  Let us trust ourselves completely to make the choices we must make.  With our self-love, we are no longer affraid to face any responsibilty in our life or face any problems and resolve them as they arise.  Whatever we want to accomplish, let it be done with the power of our self-love.  Starting today, help us to love ourselves so much that we never set up any circumstances that go against us.  We can live our life being ourselves and not pretending to be someone else just to be accepted by other people.  We no longer need other people to accept us or tell us how good we are becuase we know what we are.  With the power of our self-love, let us enjoy what we see everytime we look in the mirror.  Let there be a big smile on our face that enhances our  inner and outer beauty.  Help us to feel such intense self love that we always enjoy our own presence.

Let us love ourselves without judgement, because when we judge, we carry blame and guilt, we have the need for punishment, and we loves the persepective of your love.  Strengthen our will to forgive ourselves in this moment.  Clean our minds of emotional poison and self-judgements so we can live in complete peace and love.

Let our self-love be the power that changes the dream of our life.  With this new power in our hearts, the power of self-love, let us transform every relationship we have, begining with the relationship that we have with ourselves.  Help us to be free of any conflict with others.  Let us be happy to share our time with our loved ones and to forgive anyone who has ever hurt us in our life.

Five us the courage to love our family and friends unconditionally, and to change our relationships in the most poisitive and loving way.  Help us to create now chnnels of communication in our relationships tso there is no war of control, there is no winner or loser.  Together let us work as a team for love, for joy, for harmony.

Let our relationships with our family and friends be based on respect and joy so we no longer have the need to tell them how to think or how to be.  Let our romantic relationshipbe the most wonderful relationship; let us feel joy every time we share ourselves with our partner.  Help us to accept other just the way they are without judgement, because when we reject them, we reject ourselves.  When we reject ourselves, we reject you.

Today is a new begining.  Help us to start our life over today with the power of self-love.  Help us to enjoy our life, to enjoy our relationships, to explore life, to take risks, to be alive and to no longer live in fear of love.  Let us opne our heart to the love that is our birthright.  Help us to become Masters of Gratitude, Generosity, and love so that we can enjoy all ov your creations forever and ever. '

Thank you for letting me share that with you.  Things were feeling very dark for me before I shared that with you.  This is only the 3rd reading of this prayer in a few days.  I feel much better already.  Thank you again.

I will keep you in my prayers.  I wish you all the best.

Love, Light and Abundance,

♥Amy 

Posted on: Wed, Mar 5 2008 11:54 AM

Posted by: kellyanne1 Posts: 40

Hi there Ashiya (cant spell my apolls)

poor you i can understand to a degree,but what better way considering all youre going through you are  able to talk to us,so now youre not alone and you can actualy communicate with other people without having todo it in person or on the phone.this is where we can help you a little step at a time start to help you.cos ive been there i think the first thing you need todo is stop thinking about everything at once that you need help with.write a list, it can be as long as you want but little things you want to change.it could be from 1 to 100 it dont matter.put at the top the one that least bothers you down to the worst ever.

now cos i dont know the first on youre list forget about the rest and consertrate on that on,let the others be for now as they are there anyway.

so look at the the first one and write down how you feel about it ,ask youre self why,i think that reading through youre post that you should deal with the anxiety first.and thatshow i did it with my anxiety.it works ,do it every day write abou it and all the things that make you feel that way.but also question it as if it was someone els asking you questions and then try and answer them.then at the end of  the week read the weeks worth then write what you feel on what youve wrote.this works im telling you as im under the mental health doing cognital theropy.i cant go through all the things youre going through as you need to takle that one first.try it and please up date me or talk to me through this.god bless you kellyanne