feeling sad

[Guest guest]

Hi all,

I need a long vent and am hoping to do it here. It will be my first, aside

from my introduction so it might be lengthy but oh well here goes. My

daughter Carly is 31/2 years old and has OCD. I am pretty sure it is PANDAS

related but the jury is still out as she hasn't ever been diagnosed with

strep throat. Her symptoms manifest hard and strong and she very abruptly

stops functioning in many parts of life when she becomes ill with viruses

causing a high fever. Following an onset, very gradually over a period of

weeks she recovers and does GREAT with certain symptoms remaining but not

interfering with her ability to participate in life. We don't seem to

experience the usual sort of waxing and waning typically associated with

OCD. Just these very strong onsets usually about 4 days into an illness. We

have just been through a very long excellent period as her health has been

good not including the usual sniffles and colds. For the first time in her

life we contemplated pre-school for her and she voiced her interest. She has

always had severe separation anxiety and a strong fear of her peers so it

was never possible to have her in any daycare situation. Of course these

things existed long before we ever sought professional help or had a

diagnosis but it was real apparent to me that it went beyond the usual

developmental stuff. Anyway, as her mother I could tell she needed me and

needed something more to assist her in becoming more secure in the world at

large. She has come a huge long way and we have been so proud of her. It was

this progress that inspired the hope that pre-school might be a feasibility.

We have spent a great deal of time preparing her for it by hanging out at

the school numerous times prior to her enrollment and talking about what it

might feel like and so on. She succeeded at her first day of school!! It was

obviously a big stretch for her and there were some tears but her desire to

succeed won over her discomfort and she made it until our agreed upon time

which was to be after lunch. Unfortunately the day after her first day of

school she broke her arm at music class which is something that we have been

attending since she was about 1 1/2 years old and was the first group thing

that we ever did together to assist her in overcoming her fear of kids. Even

worse, the injury was caused by some rough play with two of the 5 year olds

and my daughter when my head was turned for 30 seconds. This has caused a

major set back for three reasons. The cast itself goes up to her armpit and

one always lingering symptom of hers is clothing sensitivity to anything she

views as tight or restrictive so you can imagine how she feels about both

the cast and the sling which she is supposed to wear. The other is her

strong fear of kids and in her mind the kids did this to her on purpose in

her own words. The last thing is her fear of pain or injury. Basically this

has shattered her long worked for sense of security and I am sure that even

after the cast is removed which is in one more week that the healing will

need to continue beyond the broken bone. After I got over the initial

helping her to deal with the pain and discomfort of the broken arm I felt

that we needed to refocus on school so that we wouldn't lose the momentum of

the first day of school and it's success. I thought that if I went with her

to school until she adapted better to her cast with the explanation that

mommy's don't go to school but that I would be her right arm until she was

more accustomed to her cast that we might still have a chance. Well today

was to be the day she would solo again. After much preparation and her

agreement we arrived at school where she proceeded to melt down and refuse

to go in or leave my car. I am not a believer in shoving her into situations

that she voices an absolute refusal to. I do however believe in gentle

encouragement which usually works unless she is truly not ready. So it is

with a great deal of disappointment that I get to the point of my venting

and accept the current reality which is that she is not ready and we'll try

to prepare her for the fall semester at which time we can try again. I was

just hopeful that she could go Monday, Wednesday and Fridays for a short day

so that I might have a little space. I am really in need of some and have

yet to find a remedy to this. It seems so unfair that we were so close and

now seem to be so far. I know you all know what it feels like to go back to

the drawing board. I just don't want to!!

Very sad Robin

[Guest guest]

Robin,

Hello. Just wanted to let you know that I can really relate to what you are

saying. My daughter was also diagnosed very young. At 3yrs old. She is now

7yrs old. Her problems are with clothing. We have been on a roller coaster

since the problems started (out of the blue). We also feel like her ocd is

PANDAS related. A lot of the things you said are the same things we have been

through!! Sometimes we feel like we have made so much progress, then we take

several steps back. You begin to feel so hopeless. But, we know we can't

give up. I would love to have just one day that is OCD FREE!!!!! I just try

to be thankful for the " good " days. I can't remember if you said that you

were going to the conference in DC. We (me, my husband & Meghan) are going. I

would love to meet you if you are going.

Good luck, Wanda

[Guest guest]

What is the information regarding the conference in DC?

[Guest guest]

Hi Wanda,

Thanks for your support. I am not planning on attending the D.C. meeting. I

am feeling better today as I have had a day to absorb the disappoint of

Carly's lack of readiness for school. I need to refocus and be thankful for

her other progress. At least she has finally adjusted to her cast!! That was

huge. I find it to be hardest when she has a long good period and we set our

sights on normal kinds of things and she can't do it. It's just a reminder

that she does have problems that need some work. I really need to

acknowledge the fact that she is doing well in general right now and not get

too impatient with the rest. Surely she will be ready to leave my side in a

group setting by the age of 18!! Anyway thanks again, Robin

[Guest guest]

Hi Wanda,

You wrote:

Sometimes we feel like we have made so much progress, then we take

several steps back. You begin to feel so hopeless. But, we know we can't

give up. I would love to have just one day that is OCD FREE!!!!!

It really is possible to be OCD-free! We are nearly there! Are you doing

CBT with your daughter? (I am sorry but there are so many on the list, I

can't remember your specific situation.) Anyway, for those on the list who

are new (my apologies to the rest of you who are tired of hearing me say

it!), my 7-yr old daughter was diagnosed last March with severe OCD. In

recent weeks, we have achieved a steady recovery. Life is pretty much as it

used to be with nothing coming up that I notice or that inhibits

activities, etc. She definitely has perfectionism and scrupulosity

tendencies that I hope to address, and says she has a counting ritual

occasionally that I do not notice. But this is a far cry from her

contamination issues that once affected food, clothing, new places,

washing/showering compulsions, re-writing and erasing, doing activities in

a certain order, etc!!

In fact, the OCD has so moved into the " not really noticable " arena that we

have shifted focus in therapy to addressing her social phobia. I would

never have believed we could have come this far from where we were. It was

not that long ago that things seemed so hopeless, just as you describe,

with good days and bad days. Kelsey has had the occasional relapse every

four weeks or so but they are quite mild and she always comes back to her

current level of recovery. (For instance, a few days after school let out,

she had one day where two new poison things cropped up. We worked on

wearing the bathing suit for 1 minute three days and then it was OK. A

poison toothbrush resolved in 1 day of CBT.)

Anyway, I want everyone to know that recovery is really possible because we

are living it. It's been a very bumpy road but we did it and your kids can

too!!! Persevere with the CBT, even if you have to start and re-start like

Kathy H has to get your kids' commitment or an accurate hierarchy in place.

Take care,

in S.D.

[Guest guest]

I am so happy that things are going so well for you!

This gives me hope that one day things will improve for

.

Take Care!

mary

Roman wrote:

> From: Roman <ChrisRoman@...>

>

> Hi Wanda,

>

> You wrote:

> Sometimes we feel like we have made so much progress, then we take

> several steps back. You begin to feel so hopeless. But, we know we can't

> give up. I would love to have just one day that is OCD FREE!!!!!

>

> It really is possible to be OCD-free! We are nearly there! Are you doing

> CBT with your daughter? (I am sorry but there are so many on the list, I

> can't remember your specific situation.) Anyway, for those on the list who

> are new (my apologies to the rest of you who are tired of hearing me say

> it!), my 7-yr old daughter was diagnosed last March with severe OCD. In

> recent weeks, we have achieved a steady recovery. Life is pretty much as it

> used to be with nothing coming up that I notice or that inhibits

> activities, etc. She definitely has perfectionism and scrupulosity

> tendencies that I hope to address, and says she has a counting ritual

> occasionally that I do not notice. But this is a far cry from her

> contamination issues that once affected food, clothing, new places,

> washing/showering compulsions, re-writing and erasing, doing activities in

> a certain order, etc!!

>

> In fact, the OCD has so moved into the " not really noticable " arena that we

> have shifted focus in therapy to addressing her social phobia. I would

> never have believed we could have come this far from where we were. It was

> not that long ago that things seemed so hopeless, just as you describe,

> with good days and bad days. Kelsey has had the occasional relapse every

> four weeks or so but they are quite mild and she always comes back to her

> current level of recovery. (For instance, a few days after school let out,

> she had one day where two new poison things cropped up. We worked on

> wearing the bathing suit for 1 minute three days and then it was OK. A

> poison toothbrush resolved in 1 day of CBT.)

>

> Anyway, I want everyone to know that recovery is really possible because we

> are living it. It's been a very bumpy road but we did it and your kids can

> too!!! Persevere with the CBT, even if you have to start and re-start like

> Kathy H has to get your kids' commitment or an accurate hierarchy in place.

>

> Take care,

>

> in S.D.

>

> ---------------------------

[Guest guest]

HI:

Hope is so important. Much of the anger I felt towards Steve's first

psychiatrist was due to not receiving any hope or encouragement from him

about Steve's prognosis. My husband was crying in the clinic waiting room

after talking to the doc about Steve's prognosis and he never broke down

before about other tragedies in our lives.

I would like to support what has said, even a very hopeless seeming

case can be improved incredibly. We never expected to get our lives back

from OCD to the extent this has been possible. Of course there is still

OCD around but it is more in the background and we have all become better

at coping.

Steve has even started to design his own E & RP and showed us how he was

reading an Eyewitness Book about the ocean shore to boss back his fear of

the beach and the ocean. He told us that the color blue is very fearful to

him right now. This was his favorite color before OCD, I guess the ocean

obsessions changed all that. There is so much blue here in Hawaii, the

sky, the ocean and many flowers. So many E & RP opportunities.

Take care, aloha, Kathy (ha)

kathyh@...

At 01:57 PM 6/25/99 -0500, you wrote:

>From: <maryth3@...>

>

>

>I am so happy that things are going so well for you!

>This gives me hope that one day things will improve for

>.

>

>Take Care!

>mary

>

>Roman wrote:

>

>> From: Roman <ChrisRoman@...>

>>

>> Hi Wanda,

>>

>> You wrote:

>> Sometimes we feel like we have made so much progress, then we take

>> several steps back. You begin to feel so hopeless. But, we know we can't

>> give up. I would love to have just one day that is OCD FREE!!!!!

>>

>> It really is possible to be OCD-free! We are nearly there! Are you doing

>> CBT with your daughter? (I am sorry but there are so many on the list, I

>> can't remember your specific situation.) Anyway, for those on the list who

>> are new (my apologies to the rest of you who are tired of hearing me say

>> it!), my 7-yr old daughter was diagnosed last March with severe OCD. In

>> recent weeks, we have achieved a steady recovery. Life is pretty much as it

>> used to be with nothing coming up that I notice or that inhibits

>> activities, etc. She definitely has perfectionism and scrupulosity

>> tendencies that I hope to address, and says she has a counting ritual

>> occasionally that I do not notice. But this is a far cry from her

>> contamination issues that once affected food, clothing, new places,

>> washing/showering compulsions, re-writing and erasing, doing activities in

>> a certain order, etc!!

>>

>> In fact, the OCD has so moved into the " not really noticable " arena that we

>> have shifted focus in therapy to addressing her social phobia. I would

>> never have believed we could have come this far from where we were. It was

>> not that long ago that things seemed so hopeless, just as you describe,

>> with good days and bad days. Kelsey has had the occasional relapse every

>> four weeks or so but they are quite mild and she always comes back to her

>> current level of recovery. (For instance, a few days after school let out,

>> she had one day where two new poison things cropped up. We worked on

>> wearing the bathing suit for 1 minute three days and then it was OK. A

>> poison toothbrush resolved in 1 day of CBT.)

>>

>> Anyway, I want everyone to know that recovery is really possible because we

>> are living it. It's been a very bumpy road but we did it and your kids can

>> too!!! Persevere with the CBT, even if you have to start and re-start like

>> Kathy H has to get your kids' commitment or an accurate hierarchy in place.

>>

>> Take care,

>>

>> in S.D.

[Guest guest]

Robin,

I just read your post about Carley. Is she only 3 1/2??? If she is, then

why push her towards school? Perhaps a play group would be more appropriate

for her?

If she is older, then I can understand your frustrations! I was the mom

that went to school with my daughter (now 13) from Junior Kindergarten to

Grade 1. We always knew that she was sensative, quiet, ... , but didnt

realize that she was depressed or had ocd until she was 10. At that time my

son, 12 now 16, was diagnosed, and my other daughter now 10, was 7yo and

also has ocd and depression!

I tried special toys, magical bicycles, all kinds of things to keep Adi in

school without me. Eventually it worked with leaving her to cry it out a

bit. Each year it took less time to adjust, I made sure the teachers

understood the difference between excessive anxiety, and normal childhood

development, and let them do their job. In seniour Kindergarten she was on

her own within one week. Grade one, she had two days. I did supply teach in

the kindergarten once a week because the teacher was on a course, and was a

parent helper in grade 1. I guess this helped too. I am a social worker now

in a youth agency.

Has Carley been to any groups, like camp, dancing, gymnastics, story time

at the library, ... without you? If she is in school in september, perhaps

this could be a goal for the summer?

Is she getting any cbt or on medication? What does her doctor suggest for

her school/seperation anxiety? Can your husband be the person who drives her

to the activity, and not you?

You sound a bit burnt out - big question in this group - what are you

doing for yourself??? Remember - if you collapse, everyone is in trouble!

take care, wendy in canada

[Guest guest]

,

I love when you say this. It helps me to appreciate

myself.

Thanks,

mary from La.

" W.Birk " wrote:

>

> From: W.Birk <wb4@...>

>

- big question in this group - what are you

> doing for yourself??? Remember - if you collapse, everyone is in trouble!

>

> take care, wendy in canada

>

> ---------------------------

[Guest guest]

Hi & All,

In response to 's post, I feel that a more appropriate word towards

Carly's introduction to pre-school is that of encouragement and of nurturing

her stated interest. Going to school. I don't believe in pushing my child

nor anyone else's for that matter. I do however believe in taking advantage

of any signs from Carly that she is ready to move a little further away from

me and possibly expand her world. I guess that in my long vent I didn't make

the greater problem clear. She succeeded in her first day of school without

my presence. It was the following day that she broke her arm and was put in

a full arm cast. Her humerous was broken through but not compound. Not so

humorous. Anyway, I did mention the depth of the problem outside of the

obvious physical discomfort due to the OCD symptoms and other phobias that

were affected by this trauma. I am burnt out after spending three weeks with

a very angry and frightened three and a half year old that HATES her cast

and HATES the doctors and HATES rowdy boys and on and on. I believe that I

also mentioned the music class which is a group setting mommy and me

environment in which the accident occurred. All in all it was very poorly

timed and very devastating to Carly and her family. I have done and

presently do many group activities with Carly and have seen a huge amount of

progress in Carly with respect to her social phobia and separation anxiety

in the one and one half years that I have focused on working on it with her.

My feelings are that if we can get through it now, as we do have a diagnosis

now rather than in primary school that it could make a huge difference in

Carly's future. It would however be easier to wait. I enjoy my time with her

and she with me. She has become very confident and secure in large groups

with her peers in my presence. The next step is to help her to realize that

she is o.k. without me. I am very tuned in to Carly and watch for her cues.

She will let me know if I am moving too fast. There is never enough " me

time " with our present situation but I am always trying to create the space

needed for some sort of personal time. Right now it is the brief period

between Carly's first sleeping hours and the long nights as she has alot of

night terrors. I am reading some good books. A far cry from what I need or

would want for myself but we can only take one step at a time. The purpose

for my long vent was primarily to howl my distress and extreme

disappointment at having come so close to achieving a critical and hard

worked toward goal and having such a tragic accident occur the day after her

first day of school which has certainly set us way back and possibly made it

something to put on the back burner for another day. I don't have the answer

to that today. I'll wait for my cues from Carly. Anyway hope this helps to

clarify. I have a great therapist that works with Carly with her OCD. She is

too young for drugs and the true form of cbt but we have an adapted version

of cbt which we do presented in a play therapy kind of way. It is adapted

each day as she grows cognitively. It isn't easy getting one so young to

face anxiety. She is a brave soldier and does her best. She is stuck with a

fulltime e & rp with her cast and it is driving her " crazy " . This is a very

difficult time in a series of ups and downs. As I previously stated, this

has followed a long six week or so period of extremely positive and

successful time and is very disappointing. I'm sure all you other parents

have been here and know how hard it is to go back to the drawing board.

Thanks for taking the time to read my post. - Robin

[Guest guest]

Hi Robin:

Thanks for sending this post. I am sorry to read how little time you have

for yourself while you are coping with Carly's social phobia and OCD. Has

her therapist set measurable goals for their work together? Social phobia

is a highly treatable disorder, and often progress can be made very rapidly

provided that the proper protocol is established and followed by the patient.

For Steve we had the proper protocols but at first getting him to follow

them was very difficult. That is where the meds came in to take the edge

off things. Without that I doubt he would have ever been successful as his

depression was too deep and his anxiety too high. Now he is on a dose of

1/3 of what he needed at first and in a few weeks he is going to try again

to titrate off his meds completely. This is all due to his success with

CBT which looked a very long shot at first.

Steve also broke his arm and had to wear a cast. We had to look on this as

a normal rite of childhood as so many children do break limbs and something

which would teach him the marvel of how he can heal himself. It is a

wonderful physical model of what they can do to heal from their OCD and

other alphabet soup. I hope that in time Carly can see her broken bone not

as a tragic occurence but as a rite of passage, part of being alive which

has ups and downs like everything else. Also she can see herself as a

survivor.

I love how you describe Carly as a " Brave Soldier " and this is a very good

foundation for the hard therapy that even one so young as her has to face

to get better. It is so hard watching all this struggle and our desire to

protect our kids and make things as non-anxiety and -fear provoking is so

natural. You are describing a lot of improvement recently and I am sure

that soon Carly will be on another upward trajectory in her recovery. Take

care, aloha, Kathy (Ha)

kathyh@...

At 10:05 AM 6/30/99 -1000, you wrote:

>From: " Dennis O'Donnell " <drcod@...>

>

>Hi & All,

>

>In response to 's post, I feel that a more appropriate word towards

>Carly's introduction to pre-school is that of encouragement and of nurturing

>her stated interest. Going to school. I don't believe in pushing my child

>nor anyone else's for that matter. I do however believe in taking advantage

>of any signs from Carly that she is ready to move a little further away from

>me and possibly expand her world. I guess that in my long vent I didn't make

>the greater problem clear. She succeeded in her first day of school without

>my presence. It was the following day that she broke her arm and was put in

>a full arm cast. Her humerous was broken through but not compound. Not so

>humorous. Anyway, I did mention the depth of the problem outside of the

>obvious physical discomfort due to the OCD symptoms and other phobias that

>were affected by this trauma. I am burnt out after spending three weeks with

>a very angry and frightened three and a half year old that HATES her cast

>and HATES the doctors and HATES rowdy boys and on and on. I believe that I

>also mentioned the music class which is a group setting mommy and me

>environment in which the accident occurred. All in all it was very poorly

>timed and very devastating to Carly and her family. I have done and

>presently do many group activities with Carly and have seen a huge amount of

>progress in Carly with respect to her social phobia and separation anxiety

>in the one and one half years that I have focused on working on it with her.

>My feelings are that if we can get through it now, as we do have a diagnosis

>now rather than in primary school that it could make a huge difference in

>Carly's future. It would however be easier to wait. I enjoy my time with her

>and she with me. She has become very confident and secure in large groups

>with her peers in my presence. The next step is to help her to realize that

>she is o.k. without me. I am very tuned in to Carly and watch for her cues.

>She will let me know if I am moving too fast. There is never enough " me

>time " with our present situation but I am always trying to create the space

>needed for some sort of personal time. Right now it is the brief period

>between Carly's first sleeping hours and the long nights as she has alot of

>night terrors. I am reading some good books. A far cry from what I need or

>would want for myself but we can only take one step at a time. The purpose

>for my long vent was primarily to howl my distress and extreme

>disappointment at having come so close to achieving a critical and hard

>worked toward goal and having such a tragic accident occur the day after her

>first day of school which has certainly set us way back and possibly made it

>something to put on the back burner for another day. I don't have the answer

>to that today. I'll wait for my cues from Carly. Anyway hope this helps to

>clarify. I have a great therapist that works with Carly with her OCD. She is

>too young for drugs and the true form of cbt but we have an adapted version

>of cbt which we do presented in a play therapy kind of way. It is adapted

>each day as she grows cognitively. It isn't easy getting one so young to

>face anxiety. She is a brave soldier and does her best. She is stuck with a

>fulltime e & rp with her cast and it is driving her " crazy " . This is a very

>difficult time in a series of ups and downs. As I previously stated, this

>has followed a long six week or so period of extremely positive and

>successful time and is very disappointing. I'm sure all you other parents

>have been here and know how hard it is to go back to the drawing board.

>Thanks for taking the time to read my post. - Robin

>

[Guest guest]

Hi Robin,

<.... I guess that in my long vent I didn't make the greater problem clear.

She succeeded in her first day of school without my presence. ... I have

done and presently do many group activities with Carly and have seen a huge

amount of progress in Carly with respect to her social phobia and separation

anxiety ....>

I was not in any way intending to criticize you. I was unclear to the

reason that she was attending school - and now that is clear to me!! I, too,

believe that children should be able to choose some of their activities. It

develops their understanding of cause and effect, among other things. A

child with social phobia and separation anxiety is definitely hard to

diagnose at that age, and to treat! I think that your approach to deal with

it now makes a lot of sense. You understand that the more she is exposed,

the more she will release her fear.

Robin, ME time is very important. We used to shift one night on the next

off, or according to schedules. Our son used to stay up banging on the

walls, crying, yelling,... anything to prevent sleeping. Because we were so

exhausted, we learned to sleep through his tirades! Do you have a similar

arrangement with Carly's father?

You are so fortunate to have found an understanding, and creative,

therapist for Carly. So many of us have had such a hard time trying to deal

with poor professionals. What does she suggest about night terrors?

Do try and find just a few minutes every day to relax and be alone. That's

what keeps me from drowning here.

best wishes, wendy in canada

[Guest guest]

,

You are allowed to mourn the loss of your 'dream child'. It is part of

realizing that the world can sometimes lead us to places we never expected

to go!

You can imagine what I felt like learning that all 3 of my kids have

ocd/depression (it was less than 4 years ago, btw)! It may reasure you to

know that I expect my kids to have meaningful relationships, to have

careers, to live independantly and to continue to be active members of

society. I have instilled in them the understanding that ocd is just

something they have to live with - and they have the ability to keep it

under their control. As they grow, and therapy continues, they are learning

just how powerful a tool they have!

big hug, wendy, in canada wb4@...

_________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.

Share information about yourself, create your own public profile at

http://profiles.msn.com.

[Guest guest]

,

You are allowed to mourn the loss of your 'dream child'. It is part of

realizing that the world can sometimes lead us to places we never expected

to go!

You can imagine what I felt like learning that all 3 of my kids have

ocd/depression (it was less than 4 years ago, btw)! It may reasure you to

know that I expect my kids to have meaningful relationships, to have

careers, to live independantly and to continue to be active members of

society. I have instilled in them the understanding that ocd is just

something they have to live with - and they have the ability to keep it

under their control. As they grow, and therapy continues, they are learning

just how powerful a tool they have!

big hug, wendy, in canada wb4@...

_________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.

Share information about yourself, create your own public profile at

http://profiles.msn.com.

[Guest guest]

Hi ,

A belated welcome to the group. I have been meaning to reply to your initial

post, but don't get to the computer as often as I'd like to.

I had to reply today to tell you that there is much to be hopeful about, in

spite of the sadness, grief and sense of loss that is overwhelming when your

child, your baby, still just a little guy, is diagnosed with such an awful

illness. It is good to read as much as you can, and I continue to recommend

it, but it can also tell you more than you want to know or need to know

about OCD.

Take heart! Many children with OCD have mild symptoms that are very easily

treatable, as long as it's treated correctly (CBT and meds, if needed).

Even though OCD is considered a lifelong illness, there is no fixed,

predictable or definite progression either in terms of severity or symptoms.

In other words, your son may never be a washer or a counter. The symptoms

do not necessarily get worse with time, although that can happen for some.

Suicidal behavior is rare with OCD, and is more strongly related to

depression, hopelessness and bipolar disorder. I believe that today, kids

with OCD have a pretty decent future, thanks to increased awareness, early

diagnosis and good treatment. So you have every reason to believe that he

could have as normal a future as any other child, if he learns how to manage

his OCD.

I would urge you to seek treatment early because it can't hurt, and because

it will potentially save you from much more grief in the future. I have

treated many young children with OCD, even as young as 4, who have responded

well to CBT (modified to their level of understanding, of course). It's

very important to have hope---hope will carry you through all the rough

times.

If you haven't already read about CBT and how to find a good CBT therapist,

I would encourage you to do that. After your son has been officially

diagnosed, the doctor and you should discuss how to talk to him about OCD,

because he needs to understand what's happening to him, but it's very

important to do that thoughtfully and carefully.

Take care,

Aureen Wagner, Ph.D.

> Can anyone here tell me if the symptoms of OCD get worse with time?

> Right now my son doesn't do the repetitive things such as washing

> hands or walking circles or counting. Is it just a matter of time

> before these things happen or is it possible that he will never do

> these types of things? I guess what I am asking is if there is a

> natural progression of things that people with OCD do or if it

> differs with different people?

>

> Thanks for reading,

>

>

[Guest guest]

Hi Pat,

I can understand exactly how you are feeling about having to leave your

job. I too, just had to do this in June of this year. I also worked

with those with developmental disabilities, but I did similar work to

what a CNA does. I worked with the same ladies for five years, and it

was very hard to deal with having to leave that job. I still to this

day am having to adjust, and it was only five months ago. I was and

still am, very determined to work want to get my degree someday. I

tried to go back to school at our community college, but I was so

overworked up until i quit my job, that I couldn't concentrate...nor

have the energy to fulfill the class expectations. Then, I started down

a rough psychological road of depression and overwhelmingness, and had

to drop my summer course. I was feeling so down about mot working and

having to leave my first job, and one that I knew I would be missed

terribly. Also, my pa flared up and still is as I'm trying to find the

right anti inflamatory medicine. Then, I developed bronchitis and

urinary tract problems, which I am now just getting over the sinus

issues, but still don't have to ut stuff taken care of. I knew that I

needed to get my health together and then tackle school or what ever it

was I was going to do with myself. I have actually been seriously

thinking about the idea of taking a medical transcriptionist course and

become certified to do transcription work. I figure that I have the

skills, as well as the want to learn anything I can about health and the

medical field. I used to say that if I could see, I'm legally blind,

that I would be a nurse! I've actually run into someone who was a nurse

that was blind so I can't say that anymore! We all know my body

couldn't handle that stuff again. Anyways my point is, I understand how

you are feeling, as well as the emotional roller coaster your going to

be dealing with. If you need a shoulder, I'm here and will

listen...cause I can relate to your situation. Feel free to email me

off list if you want. I will keep you in my prayers and that things

will be as positive as possible for you!

Hugs

Carla

---

Outgoing mail is certified Virus Free.

Checked by AVG anti-virus system (http://www.grisoft.com).

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[Guest guest]

i see this group has forgotten about my mom brenda its okay she is just a burden

on thisgroup thanks for giving up i never did, she has now had a stroke and ,

well im sorry for bothering you all , my mom was dedicated to this group and

others, when i tell her no one cares anymore its gonna break her heart im sorry

for dumping my moms health on this group i will not post again .. bjorn

[Guest guest]

Hi Fran,

As always thank you for your kind supportive words. I think perhaps

this was a good time of year to leave since the holidays are busy

anyways, even though I am not doing very much for them I am still

involved in the planning. My online courses in the Spring will help

keep my mind occupied, I love school and learning new things. I know

things will eventually work out and I will adjust. The hardest part

for me is trying to forget about the disease and not dwell on it. The

pain is just so bad in my hands and knees and hips that it doesn't

let me forget. I see the Dr again on Dec 8th so I hope perhaps he can

help with some of the stiffness and pain.

Do any of you know how Humara works on PA? The enbrel doesn't seem to

be doing what it should. The Rhuemy said he might switch me to humara

and put me back on the MTX.

Thanks Again

Pat

>

> Dear Pat, I understand how you feel about quitting work. When I

finally

> gave up going in, I was lost for days. The only thing

that " helped " me deal

> with it; I was too sick and in too much pain to care too much. In

the last

> 3.5 years, I haven't officially worked (my husband and I own a

insurance

> company that we ran together for 13 years), I haven't driven, I

normally

> use a wheelchair when I do go out for any period of time, and in

the last

> two years both my girls moved out so I'm dealing with the empty nest

> syndrome. I never worried about missing them too much, since I

knew my

> husband and I would be really busy working and hopefully taking

those

> vacations we planned together.

>

> Life doesn't always work out like we plan as all of us with PA are

well

> aware. I did have a grieving period when I stayed home. For a

long time I

> was depressed and kept trying to figure out how to heal myself,

since my

> doctor's didn't seem to have a clue. All that did was lead to more

> frustration. It' stood to know everything we can about our

disease, but

> when we try and play doctor to ourselves it only tends to depress

you more.

>

> Before when I had free time I always worked on stained glass art,

but I

> quickly found that my hands weren't strong enough to cut the glass

anymore.

> Then one day I was playing around on Ebay and came across some

mosaic art

> work and fell in love. I realized I could do this since most of

the glass

> tiles are cut already and at the most you only have to trim them

down. So I

> jumped in with both feet, since my hands are so bad...lol, and

didn't look

> back. I just love it. I now have my own web site and am selling

my things

> on ebay. It's slow, but Ebay is just slow right now. The only

thing I

> really want to do is pay for my supplies right now. I read

constantly, and

> try to watch as little TV as possible. I've found at least with

me, the

> move TV I watch the more depressed I get. I have no idea why, but

maybe

> it's because I'm just stuck in one place. I need to be busy with

something

> as long as the pain isn't too bad.

>

> Believe it or not my days go pretty quickly now, and I basically am

home

> alone the whole day. I don't have a lot of close friends since

when we

> moved here, all I had time for was my family and the office. Now

both are

> basically moving on and sometimes I wish I had taken the time to

make close

> friends here. It's not that easy to do when you are limited

physically.

> Luckily, I have two great girls who come home and see me all the

time. MY

> husband is great and very sup portative when he's home,

unfortunately he

> works way too much. I do get lonely from time to time, but the

Internet

> helps.

>

> I guess what I'm saying in a round about way, is your do adjust.

It's not

> easy and at times you want to scream, but all in all you can still

find

> happiness just about anywhere if you look hard enough. I hope your

> transition isn't too rough and you don't miss the kids and your

fellow

> workers too much. You are most likely doing the best ting for

yourself and

> hopefully the rest will give you more energy to face this stupid

disease.

>

> Take care and write me anytime. I hope things improve for you and

you

> adjust just fine. Keep in touch. Love, Fran

[Guest guest]

kath,

you had me laughing out loud with that one, peabrain!!! 15 cold and

chilly minutes it is! i'll keep you posted.......

LOL

karen (i wonder what the doctor's office is going to think as i

walk in with my frozen veggies! lololol! - do i care? NOT)

>

>

> ,

> Everything I've learned about shooting up, I've learned from here,

LOL,

> however the use of a box of frozen peas as a numbing agent is my

brainchild.

> Perhaps that makes me pea-brained? I usually keep the peas on my

injection site

> (my thighs) for about 15 minutes before injecting. Please let us

know if it

> helps you, too, .

>

> Best,

> Kathy F.

>

> In a message dated 11/19/2004 4:23:51 PM Eastern Standard Time,

> missionblondie@y... writes:

>

> Kathy,

>

> I'm not on Humira but get injected with gold every week and it is

> very well know for its major sting qualities. I get it in my hip

and

> always have to instruct where to put it in because of nerve

endings

> and the like - and yes, the rule of the day is SLOWLY please. The

> idea of numbing the site with frozen peas is brilliant - I will

have

> to give that a try.

>

> Thanks for the heads up.

>

>

>

>

>

>

>

>

>

[Guest guest]

Whether Bjorn is , is Bjorn...or they are 2 different

people...This person is mentally ill any way you look at it. Who

the heck would be so confrontational?...especially with a bunch of

strangers?...as if we all don't have enough of our own problems ! I

feel like I've been worrying about " " and praying for her ever

since joining this group. What more does a sane person expect from

a group of people they don't even know?!!? Give me a break !

Enough is enough...

I read your replys and agree 100%.

>

> i see this group has forgotten about my mom brenda its okay she is

just a burden on thisgroup thanks for giving up i never did, she has

now had a stroke and , well im sorry for bothering you all , my mom

was dedicated to this group and others, when i tell her no one

cares anymore its gonna break her heart im sorry for dumping my

moms health on this group i will not post again .. bjorn

[Guest guest]

fran,

as usual you have (in my humble opinion) said just the right thing -

and the message, though directed at mickey, reaches all of us.

sincere thank you's...

karen

>

> Dear Mickey, I don't know if we have ever corresponded, but I had

to write

> you now. First of all, thank you for the kind words you said

about me. All

> of this praise is going to go to my head, and it catches me off

guard every

> time. I simply do this because I enjoy it and because it helps me

feel good

> to help people. So in a way, I'm being pretty selfish at times.

>

> Please don't think that I am never at the end of your crevice.

I've been

> there often and still end up there from time to time. I think we

all do if

> we truly understand the scope and progression of this disease. I

got the

> impression from your email that you didn't want a bunch of " it

will get

> betters " or " hang in there's " so I'm not going to say that to you

at all.

>

> I don't know if you read a lot, but I'm reading a book now

called " A

> delicate balance, living successfully with chronic illness. " by

> Milstrey Wells. I got it on Amazon for about $12.00 I think.

Anyway, it's

> not a book full of mind altering news, but it does have a lot of

common

> sense ideas that seem to hit home with me. Try and read it if you

can and

> let me know if you think it helps you at all. I realize tomorrow

Mickey,

> you might be up again and not feeling this low. But it's still a

great book

> to have around if for nothing else, than quick referrals. Just to

give you

> a quick taste of what's in it...It starts out like all of us

with ... " the

> search for the diagnosis, to " is my illness really all in my

head " , to

> finding a doctor, a search for treatments, finding out what makes

us feel

> well, from denial to acceptance and back again, how to be sick in

a healthy

> world, changing the way we look at work, and finally the gift of

chronic

> illness. Needless to say, I've not made it to the end of the book.

>

> I do think so many times many of us are thinking of the chapters

up above.

> Sometimes we get stuck in a chapter and spend several years just

there

> alone. Right now you seem to be in acceptance. What hit home

with me on

> this is how often we change from acceptance, to denial, to

acceptance, and

> back again. Basically acceptance isn't about the future, it isn't

forever,

> it isn't about failure, it doesn't mean you are giving up, and it

doesn't

> mean denial. What acceptance means is adapting to change and our

constant

> searching for a balanced life. (Most of this is directly from the

book so

> please don't think I " m too smart here...lol) I wish you were here

right now

> Mickey and I'd just give you my book to read. I know it won't

make all your

> problems go away and it won't change your future. But it can make

you feel

> better about the time you have now, or the time you have that is

coming to

> you.

>

> No one ever really knows how long we have, or if they will end up

in a

> wheelchair or dependent on the their families. I've found for me

the

> healthiest way to live is to live for today. The future is too

unsure,

> unclear and not even guaranteed to any of us. We all have today

and what we

> do with it is what makes the difference. I hope I don't sound

preachy. It

> makes me sad to hear you so down, when normally you are the

positive one who

> is always giving great uplifting advice. I know you are just

having a rough

> time, and we all do from time to time. So I'll end there before I

tell you

> to hang on or it will get better...lol.

>

> I will say thank you for being so great in our group. You

contribute a lot

> and I always read your emails with great interest. Take care and

if I can

> be of any help in anyway, please write me. Love, Fran

[Guest guest]

---

Hi Micky,

I know you were writing to Pat, but your message really hit " home "

for me. Lately my bad days are becoming more often and my good days

are less. Today is a good day-Mon., Sun., Sat. were bad days-I was

so achey and felt like I had a flu I could barely get out of bed. I

was mostly sleeping these days and when I did get up my hip, legs,

knees and ankles hurt so bad I couldn't hardly walk. What got me

through these days? Looking for today-that good day, my two

children, remembering good times, this support group, hope....I know

you will make it because I know I will too.

God Bless, Sue.

In , " michael szczygiel "

<mickysz@t...> wrote:

>

> Hi Pat

>

>

>

> It breaks my heart to hear one of my fellow PA'ers giving up the

things she

> loves just because of this awful disease that we all suffer from. I

would

> love to say that it can be fixed and that you will find the cure

you need to

> get back to work, but as some on here are probably all too aware

of, the

> reality can be a lot worse than even what we first feared when we

are first

> diagnosed. Even the founder of this site is suffering in a

big way

> at the moment with various ailments that no normal person would

even begin

> to understand but despite this she continues to post as much as she

is able,

> and if any of us doubt what can happen to us we only have to

remember the

> posts that Gordon used to send in about the pain that was totally

unbearable

> for him, to the point where he had pretty much constant care. I

pray that

> Gordon is still fighting away over there in Australia and giving

the nurses

> grief as usual, but I fear that all may be lost for Gordon (I

really hope

> not but that may be the reality) Then we have Marti who is a great

person

> and who suffers with the worst form of this disease in such a way

that it

> makes me so proud of her and the way she is still able to joke

about it with

> us. We have Fran who although in a lot of pain herself is always

there to

> give people a hug or some beautifully written post full of real

compassion

> for complete strangers who have posted for the first time. We have

Orin who

> is on a one man mission to make us more knowledgeable about this

disease

> even though he has to bear his daily dose of pain. We have

who

> although in pain is still able to bring a smile into the group at

will with

> one of his one liners and finally we have Kathy who does an

excellent job of

> keeping the politics and religion out of our posts and makes it run

so

> smoothly that we forget that it can be difficult to be a moderator.

>

>

>

> The reason I say all this is because I have been thinking a lot

lately of

> what the future may hold for me and my family and to be honest I'm

quite

> worried about my prospects. I had started to jog recently and was

on such a

> high that it was almost as if I had never heard of PA, but to my

total

> despair and anger I have gone into another flare up of my ankles

and feet!

> Due to the fact that the jogging has made my joints and tendons so

tender

> that they have come crashing back into my life with a vengeance! I

really do

> think that I have come crashing down to earth with a bump and I am

starting

> to acknowledge that I am gutted! It's like a rollercoaster at the

moment

> and when I reach the top I just come down faster than I got up

there as if

> someone is telling me to just give up!! Forget it you're a loser

and that

> you cannot ever get off the ride no matter what you do and what you

take for

> it! I'm usually so upbeat that it really is a struggle for me to

feel like

> this! I exactly know how Pat is feeling right now because I am

there with

> her stride for stride ( or should I say limp for Limp) I know that

people on

> here will try and cheer me up and say that it will get better and

they are

> probably right, and I have said it to many people before on here so

I know

> that they are right but at the moment I just feel so angry that my

genes

> have caused this to me and that no matter what I try and do

eventually the

> bugger is going to get me ! An old age of Wheelchairs and Walking

sticks

> was not on the agenda when I asked my wife to marry me and I feel

so guilty

> that I have got this bloody disease, sometimes I think she would be

better

> off without me but then she says that is not true and that in

sickness and

> health is what she said and is what she meant. For that I am

blessed and for

> my children I am blessed but today my daughter said she had a pain

in her

> knee that just came on at school so again the guilt kicks in and I

curse

> myself for passing on my faulty genes to my children. It turns out

it was

> just a scrape she got at school but still the guilt is there like a

gnawing

> at the back of my head eating away at my soul ever so slowly. My

joints are

> slowly wearing out I feel and it won't be long before I may have to

give up

> work so another big part of my life will not exist anymore and I

get the

> feeling that if it ever came to that situation then I would be

inclined to

> think that there would be no point anymore in pretending that I am

going to

> live to a ripe old age and that I may miss the best years of my

> grandchildren's life or worse that I will be there but sitting in a

> wheelchair a burden to the whole family who has to be fed and

changed and

> helped in and out of bed! God that thought is so scary that It

doesn't even

> bear thinking about for me. I know the new drugs are supposed to

make me

> feel better and that yes maybe they will prolong my healthy

lifestyle for

> another few years but what then? What when they find out that these

things

> are more dangerous than first thought then what then? I would

rather die

> young and have had a great life than to die old and live as an old

shrew

> clinging on to life taking tablets by the bucket load just to get

out of my

> bed... Surely life was not meant to be like this? They say that

this is

> great test of character having this disease and as I feel right now

my

> character is starting to take a hell of a beating! I can only

admire the

> people I have mentioned and how they cope with this disease in such

a way,

> but I'm not like them I'm feeling that I'm standing at the edge of

a crevice

> that has no ending and I'm just about to fall off!

>

>

>

> I'm not looking for hugs and kisses I'm just in total shock at what

a nasty

> way the cards have been dealt out and I'm not looking for answers

or cures I

> just wanted to put down how I feel at the moment, and that like Pat

I just

> can't get my head around this disease at the moment, I will

probably perk up

> tomorrow when I get a cuddle off of my son or something.

>

>

>

> Thanks for listening

>

>

>

> Micky

>

> London

[Guest guest]

Such support from such wonderful people is so much appreciated; I feel I am

letting the board down by being so damn down!! But if I'm honest I still

feel that way despite such great ideas and support from my dear friends on

here. What I said yesterday and what I still feel today is so much bloody

anger .at myself, at the world and at this horrible, horrible disease!

I once wrote a poem about PA and I read it last night as I was posting and

it was so damn bloody true! The bit about being on a ride and wanting to get

off! The only people who understand what I am going through right now are

you guys.. I try and speak to my wife and It's the classic line of it will

get better with those new drugs, and yes it's not her fault that she does

not understand what I am feeling like at the moment, she's never had PA so

how would she know?. She tries to give me as much support as she can and I

love her for it, but what I'm trying to say is that I'm a human being I Feel

like such a failure.

I've tried all the usual routes with this disease like different drugs,

different outlook, different diet, different cream, different exercise,

different rest, different Alcohol intake, different shampoo, different

bloody everything, and at the end of the day nothing seems to slow down this

thing that we all endure on a daily basis. I'm not a quitter and from day

one have made that my number one rule with this thing, but I'm not superman

I haven't got magic powers that will take all this away from me. I'm a

simple bloke just trying to get through this life of ours and bring up my

children to respect their peers and elders. I really think I have reached a

crossroads in my life and that the old Micky that I loved has been replaced

with a sad old shadow of his former self.

Suicide is not an option. no matter how bad I get I know that I could never

do that to my family, but isn't it bizarre to think that I have actually

resented the fact that I have a family because in this warped state that

this PA brings on I actually think I would have done it by now if I was On

my own.. Maybe that makes me weak, I'm not sure and at the end of the day it

was only a thought. but god don't I just hate this disease for making me

even think like that!! Is probably right about the counselling thing

and maybe it is because I'm only 32 that this thing is dragging me down If I

had been say 50 or over maybe I could except it more and just take it in my

stride, and again like I'm not usually the touchy feely type poster

and hence why I said I didn't want a bunch of it will get better or hang in

there type responses

Maybe that is they key, maybe because of my age it's just so damn hard to

accept. I can't get the picture out of my head of Gordon and his suffering

without being so damn angry. Maybe that is what has prompted me to post

about all this, maybe people asking about Gordon has made me put two and two

together and get Five! I don't know. And the fact that is no longer

posting because of his own problems with this painful disease has made me

think as well.. He usually put me in my place if I ever got on the pity pot

like now. He's like a Sergeant Major who is for ever geeing up the posters

about the good things in life etc. I miss that...

I've taken on board Fran's kind words about denial and acceptance and denial

again and can't help feeling that I know she is right but it doesn't stop me

being so fed up! I do read a lot Fran, and maybe I will get that book but

just the fact of buying it is making me think that I'm losing the plot with

this PA or that I'm some kind of failure, and that I need to take some

Prozac or something. I do hope for the sanity of this board that I do cheer

up sometime soon, or I think I could find myself being kicked off for being

to bloody depressed and bringing everyone down with me. That's what I hate

the most. is that this PA has power over my emotions and how I feel on a day

to day and hour to hour and even a minute to minute basis. And maybe I

should just accept what the cards have dealt me and get on with it but at

the moment I'm actually happy being miserable and angry about this (if that

makes sense?) I'm usually the first one to argue for someone if I feel a

wrong has been done or if I think they need a kick up the backside. But

where does that leave myself with this PA who do I argue with? I'm not very

religious so I can't ask the man upstairs? I'm finding that I want to scream

and say no more!!! But what help is that going to be? I can't argue with

myself can I?

..so that leaves you poor folks and this message board where often I have

seen people Vent on here and I think I'm in the middle of a big one!

It was good to see that is back posting on this board that's one ray

of light in this dark chapter of mine and I'm sorry we meet again when I am

so fed up, and like I have tried to control this thing and not let it

get to me, but I feel like one of those big Dams that was holding everything

back and now I have a little crack in that wall and that the whole god damn

thing is going to collapse on my head. Does that make sense? Hope is a good

thing , and your words are up-lifting, but at the end of the day it's

only a word. Like I hope it doesn't rain tomorrow but it inevitably will or

like I hope the grass is greener when inevitably it isn't.. I'm sorry to

burden people with my feelings, but this is the only place I know that will

let me do that, that is apart from taking it out on my family and friends

and losing them as well in addition to all the other things I have lost in

my life recently due to PA.

Thanks for enduring

Micky