Therapy Or The Forum?

[firewatcher]

Howdy Y'all,

I've been considering asking my former psych for a referral to a therapist. Dealing with chronic illness/kids/family/etc. is frustrating at best. I'm having a hard time deciding how to divide my time between all the necessary stuff and feeling guilty when something has to slide. Has anyone had any success with therapists? I've got a bad track record with psychologists and the "Art" thing...they keep wanting to find some underlying personality disorder that doesn't exist (confirmed by my psych.) Is the forum more supportive? Am I setting myself up for failure by even looking? I am so sick of doctors, but there has to be a better way to cope!

[Noreen]

I'd have to say they go hand in hand. I was a blithering mess even with therapists before this forum. Theere is so much to the nervous system and not being able to recognize all the symptoms is rough. But to be able to say what the issue is briefly was beyond me before I got here. Of course, even still your therapist selection /search should be for one with experience with chronic disease (e.g. MS) and its ramifications on the family. However, the therapist won't have the keen insight into dysautonomia that the members here have.

Now if you have an excellent supportive spouse, maid service, a hair dresser with caring attitude and wonderful obedient children perhaps this doesn't apply to you. Me - I have a serious problem turning off the Mommy button.

You can put yourself first for an hour, have someone help you prioritize things, help you brainstorm solutions, let you know if you are acting loony. Vent when the kids are being kids but you can't deal with _______________insert sensory issue or additional energy drain here.

And, of course, the insights you gain from therapy will benefit the forum.

[firewatcher]

I'd have to say they go hand in hand. I was a blithering mess even with therapists before this forum. Theere is so much to the nervous system and not being able to recognize all the symptoms is rough. But to be able to say what the issue is briefly was beyond me before I got here. Of course, even still your therapist selection /search should be for one with experience with chronic disease (e.g. MS) and its ramifications on the family. However, the therapist won't have the keen insight into dysautonomia that the members here have.

Now if you have an excellent supportive spouse, maid service, a hair dresser with caring attitude and wonderful obedient children perhaps this doesn't apply to you. Me - I have a serious problem turning off the Mommy button.

You can put yourself first for an hour, have someone help you prioritize things, help you brainstorm solutions, let you know if you are acting loony. Vent when the kids are being kids but you can't deal with _______________insert sensory issue or additional energy drain here.

And, of course, the insights you gain from therapy will benefit the forum.

I do have the excellent supportive spouse, when he is here (travels a LOT,) but he really doesn't grasp the "medical implications" of POTS and why the doctors aren't looking for the underlying cause any longer. I've got one kid with ADD and the other has anaphylactic reactions to dairy so I have to KNOW what is in every bite he eats. My hairdresser has fired me due to the constant headache and scalp pain and my house looks like a bomb hit it! I really need an ear to whine to that can think logically and give me options. I'm not depressed, but I am very nervous about therapy.

[janiedelite]

You can put yourself first for an hour, have someone help you prioritize things, help you brainstorm solutions, let you know if you are acting loony. Vent when the kids are being kids but you can't deal with _______________insert sensory issue or additional energy drain here.

I started seeing a therapist (MSW, not psychologist or psychiatrist) when the burning skin pain really started, about 2 years ago. I was wearing out my husband with my anxiety regarding my new, painful, and unknown illness. My mom has her own illness to deal with and stress makes her sicker, and my friends were supportive but I was still oh so overwhelmed, and was mostly in so much pain! I started weekly therapy in order to develop tools that would help me cope with my pain, because the only other resource at the time was narcotics and I chose to try to use those very sparingly.

I saw her for about 8 months, and she helped me cope more effectively with the physical pain, but also with the losses that occurred because of my illness (disability, not getting pregnant, losing friends, feeling like I'm 87 and not 37...). My hubby and I also met with her together a couple times for marraige counseling, but mostly I just learned to deal with the pain and anxiety of having a rare neurological illness. I stopped seeing her after I got back from Mayo and had a treatment plan.

I do regret not finding a someone with a medical background who might be able to understand my illness a bit better. I had to spend a good bit of time explaining the physiological reasons behind my symptoms, and maybe a medical professional might understand things without going into such detail. But they might not have been as supportive and empathetic.

However, this forum has been the best resource for me overall. It's here in the middle of the day or night, there's always someone who can relate to my issues, and I don't have to explain my illness every time I need support. Still, a therapist who you see regularly can put undivided focus on you and hopefully help you to gain insight, lower stress, and feel more capable of handling your problems. I think it's worth going, if the cost doesn't cause more stress in the process!

[Noreen]

You knew I was kidding, right? I thought it may have may a case of nerves and that is why I went for my brand of comic relief - sorry if it didn't translate as such. Know what you mean about the hairdresser - it's pretty hard for her to put dye on a head that is moving about due to the torticullis. I've been dismiised from her service - my roots are 4 inches long. Is there a therapist for that? sorry, there goes my humor again.

You have many valid reasons to seek out a therapists. There are people with all the support systems in the world who need a therapist just to deal with an ADD kid.

Essentially you are entering a new relationship. Everybody gets nervous going into new relationships.

Noreen

[firewatcher]

Noreen, honey, I did get your humor. I was just expounding on my scope of difficulties. If you find a therapist for your roots, I'll let him/her cut my hair!

I am just Sooooo tired of explaining and explaining this whole d--- illness to my PT, my MD or friends I haven't spoken with in a while. I just don't want to go back to the days of "its all in your head" again. I also have that "artist" stigma where everyone thinks you are Van Gogh and have deep rooted psychological problems or underlying mood disorders as the root of your creativity!

[Noreen]

Boy do I understand that. If I have to be so sick, could I please have something that fits on a 3 x 5 card so I could just hand it out? Really it would make my life so much easier. We need a brief description to hand out. Then we could wear a card around our neck with one side green for asymptomatic and the other red for symptomatic. They'd just have to believe us not to talk to us when the red card was showing.

I think the thing that has saved my sanity is this forum as I wait and wait to find the right doctors - since that last 7 month wait to get into the teaching hospital didn't work out. The experiences of the members of the forum helped me tie together my dxs and realize that most issues are related to the underlying hereditary connective tissue disease dx- it just all makes more sense.

I know what you mean when you say they want to blame things on deep seated issues. It drives me nuts when therapists want to dwell on 'my major depressive episode' 20 yrs ago when my son was killed. It was painful, I dealt with it, I still miss him, move on people. I hhave chronic pain and an Aspy teenager and husband who was never dx until 4 yrs ago - I have more than enough to deal with in the present. My present therapist who I haven't seen in a while due to financial constraints uses humor a lot her dx - "Boy you must have been really bad in a previous life." LOL

[Guest tearose]

I have a support circle of friends, family and I do meditate and talk to the "universe". I started a "disability / chronic illness support group" too. I just never found a need for a therapist. I figured the good ones will teach us how to solve our own issues so I tried to help myself. I did choose to see a good psychologist to be sure I wasn't in denial over living with chronic physical challenges and the effect on my life. I saw her twice and she confirmed that I was using excellent coping skills and she could offer nothing better or else. It was a good feeling. She made me feel like I am able to manage living fully with physical disability.

[firewatcher]

I talk to the universe as well. As an introvert, I often self-reflect and I am aware that I have one really glaring flaw: I rely on my own intellect far too much to solve problems. I just want to have an outside opinion and an impartial sounding board. My husband says I'll never find what I'm looking for, but I think that I have to try. I've got a name of someone and I'll see if I can tolerate her.

[Guest tearose]

You are so sweet firewatcher.

I am not having a clear communication day but I will try to put into words what I am sensing.

It is good to use your own intellect. At least it is in tact! Use it or loose it.

The forum is a great place to share with people who we know understand our struggles.

Friends and Professionals are available too...

I think the issue you are dancing around is not where to go to find the support you seek but rather knowing that the answer is just simply inside yourself! No person, spouse, friend, Divine energy will give you the ultimate "you are okay". We must say this and acknowledge that we are all we can be in this moment. We may be bruised, some may feel broken...we are human and sometimes feeling small and weak. There is just no one right answer for you or anyone that comes from anywhere but inside ourself. As long as we are doing our personal best we should give ourself a big hug and appreciate where we are.

It doesn't matter about all the stuff, obligations, laundry...

You are beautiful, loved and appreciated. Just the way you are in this moment.

There are many around you who love you just the way you are!

Know I love you.

tearose

[Noreen]

That is wonderful, firewatcher.

She better live up to your high standards.

Take care,

Noreen

I talk to the universe as well. As an introvert, I often self-reflect and I am aware that I have one really glaring flaw: I rely on my own intellect far too much to solve problems. I just want to have an outside opinion and an impartial sounding board. My husband says I'll never find what I'm looking for, but I think that I have to try. I've got a name of someone and I'll see if I can tolerate her.

[erik]

...they keep wanting to find some underlying personality disorder that doesn't exist

There it is! Your problem is a lack of craziness. Most everyone has some. As the noted philosopher Seal Henry Olusegun Olumide Adeola Samuel said:

"We're never gonna survive unless we are a little crazy!"

Perhaps not axiomatic words to live by (though the song has some depth to it), but certainly worth contemplation.

[firewatcher]

...they keep wanting to find some underlying personality disorder that doesn't exist

There it is! Your problem is a lack of craziness. Most everyone has some. As the noted philosopher Seal Henry Olusegun Olumide Adeola Samuel said:

"We're never gonna survive unless we are a little crazy!"

Perhaps not axiomatic words to live by (though the song has some depth to it), but certainly worth contemplation.

Erik, Believe me! I would love to be diagnosed with some sort of personality disorder...it would be a good excuse for some deliberately BAD behavior!

[juliegee]

You are so sweet firewatcher.

I am not having a clear communication day but I will try to put into words what I am sensing.

It is good to use your own intellect. At least it is in tact! Use it or loose it.

The forum is a great place to share with people who we know understand our struggles.

Friends and Professionals are available too...

I think the issue you are dancing around is not where to go to find the support you seek but rather knowing that the answer is just simply inside yourself! No person, spouse, friend, Divine energy will give you the ultimate "you are okay". We must say this and acknowledge that we are all we can be in this moment. We may be bruised, some may feel broken...we are human and sometimes feeling small and weak. There is just no one right answer for you or anyone that comes from anywhere but inside ourself. As long as we are doing our personal best we should give ourself a big hug and appreciate where we are.

It doesn't matter about all the stuff, obligations, laundry...

You are beautiful, loved and appreciated. Just the way you are in this moment.

There are many around you who love you just the way you are!

Know I love you.

tearose

That is beautiful, Tea. When will your book be out? I want an advanced, signed copy!

[Guest tearose]

You made me smile Mack's Mom. If I start writing now maybe it will be done in twenty years!

It is very hard for me to write and feel like I am expressing what I want to. I think I do better just communication in the moment. That was a kind thought you had just the same!

As for the content, it was from my heart and all learned in the 19 years of managing dysautonomia and trying to live life fully while doing so. I suppose the "book" is already here. With many co-authors!

...with love to you too!

tearose

[juliegee]

You made me smile Mack's Mom. If I start writing now maybe it will be done in twenty years!

It is very hard for me to write and feel like I am expressing what I want to. I think I do better just communication in the moment. That was a kind thought you had just the same!

As for the content, it was from my heart and all learned in the 19 years of managing dysautonomia and trying to live life fully while doing so. I suppose the "book" is already here. With many co-authors!

...with love to you too!

tearose

See???? Another gem and so true. The book is here. We are all co-authors, but I elect you to compile.

With Love-

Julie

[mountain girl]

I saw a therapist once, because it is difficult living with a chronic illness like this and I just wanted an outsiders oinion if I was dealing with it in the healthiest way possible. He was nice and seemed to think that I was, and that being a part of this forum support group was a good way to cope. I didn't feel the need to go back. So for me, the forum is the therapy I need when I need it. Not only therapy, but company and so many people who truly understand this unusual disorder.

[Maxine]

It's difficult to comment on this, as forums can be supportive for many, but some people may get lost in the shuffle. I think a therapist is also needed to get us through the very difficult challanges with this illness, and any other illness that ANS dysfunction may be secondary to.

Tearose, you have been one of the most supportive people here, and I have always felt your words were sincere. I'm thankful for those who speak from their heart, and THINK FOR THEMSELVES--------not judging people......

Support forums can be a saving grace-----but, depending on who's running them, they can also break a person's spirit.

Forums are supposed to be a place where you can find comfort when all else fails you. Your therapist is a compliment to this, or very necessary when a "support" forum fails you.

There's some really good people out there who are broken--------broken hearts, brokens bodies, and broken spirits. They need really sincere, hopeful, mature, and kind hearted people to get them through this on going struggle with this illness, abusive doctors, cold hearted family and friends, and trolls who have nothing better to do then increase our misery even more.

We also have to rely on our inner strength and street smarts. I think a support forum can also make or break a good attitude.

Maxine :0)

[Noreen]

There's some really good people out there who are broken--------broken hearts, brokens bodies, and broken spirits. They need really sincere, hopeful, mature, and kind hearted people to get them through this on going struggle with this illness, abusive doctors, cold hearted family and friends, and trolls who have nothing better to do then increase our misery even more.

We also have to rely on our inner strength and street smarts. I think a support forum can also make or break a good attitude.

Maxine :0)

Maxine-

Wonderful post. Quick question -do insurance companies idjits fall into the troll category or do we reserve a special cretin category for them?

Any dealings with the worker's comp and/or disability system could seriously land you in need of therapy - if you have the energy to go.

Noreen

[Maxine]

Thank you--

Uggggg-----insurance companies, SSDI, stalker nurses.......... I think you can give them a category all their own... still thinking of that one...lol

I had a nurse from a trusted doctor's stalk me on this forum who tried to discredit me when I filed for SSDI. She read my postings on here. I have my suspicions on how the whole thing evolved, and I won't get into that here.........but never in my wildest dreams did I ever think THIS doctors office would employ a nurse like this, or the other nimrod that probably put her up to it. She basically tried to call me a malingerer in so many words. It was the worst thing that could have happened in my life at this time, and to this day I have developed major trust issues because of this. This is when I went back to my psychologist---I really needed him.

I worked for over 22 years in my life, and I loved working outside of my home. I like the type of work I did! It was a long and difficult decision, and the ironic thing is right when I was finally approved for my SSDI, I was offered a job that I had wanted for a long time at the same hospital this nurse worked at. The position was in financial counseling in medical billing. I was sick about it, but knew that I would have never been able to handle a regular working schedule. It's such a personal thing---filing for SSDI, and I was verbally attacked at one of the most vulnerable times in my life.

Thankfully the SSDI was approved, and that I had other supportive doctors in my corner. Why would I want to cut my usual salary to less then half of what I made if I could work?

Maxine :0)

[firewatcher]

Well, I've got an appointment. May 18th. We shall see if it helps, I have a list of questions ready for the first appointment; my best friend says that they are all "trick" questions, but I'm not spilling my soul to someone unless I can trust them. I've been burned by people I thought were my friends, so I'm overly cautious with my feelings. Respect is also a huge issue, and I need to know upfront where we both stand. I will not be treated like a hypochondriac nut and I will not tolerate a patronizing attitude!

[Maxine]

Good for you Firewatcher! I've been burned by people who you wouldn't imagine doing such a thing. This thing with stalker nurse was part of a collusion-----and the really sad part is the dingbats involved don't understand the seriousness of what they did. I will continue to speak my mind on this as long as I feel like it. It's like cleansing the garbage out, so I can put to good stuff back in.

I don't like seeing people getting kicked when they're already down. There's something seriously wrong with people who do this, and karma WILL get them.

Keep strong in protecting YOU------and advocate for those who are too weak and sick to do it for themselves.

Maxine :0)

[Guest tearose]

Well frewatcher, let's hope you have the right person!

I am curious and hope you will share...what you learn from a therapist that makes a difference for you.

I pray the answers you seek will be discovered with this new relationship.

hugs,

tearose

[Noreen]

I had a nurse from a trusted doctor's stalk me on this forum who tried to discredit me when I filed for SSDI. She read my postings on here. I have my suspicions on how the whole thing evolved, and I won't get into that here.........but never in my wildest dreams did I ever think THIS doctors office would employ a nurse like this, or the other nimrod that probably put her up to it. She basically tried to call me a malingerer in so many words. It was the worst thing that could have happened in my life at this time, and to this day I have developed major trust issues because of this. This is when I went back to my psychologist---I really needed him.

Maxine-

I somehow missed this post. Perhaps I have a bit of cognitive impairment - lol.

That behavior is unconscionable as well as unethical - I hope you reported her to her professional organization.

Like anyone would choose disability! - I still can't accept that I can't even type a post without problems and I have been typing since I took my mother's personal typing course in 5th grade (she taught high school) and have anxiety attacks due to not being able to spell -(part of my visual thinking - I have to see the word spelled correctly and I'm over 50 so I learned to spell everything correctly).

TTF - Thank The Forum - for teaching me what anxiety attacks were enough so I could recognize what was happening, associate the occurrence with hyration/meds and help reduce them, and locate my brain instead of beating up on myself for not being able to do something so simple.

Noreen

[Maxine]

Reen,

I did report her,but I ended up being micro managed from that office until some staff changes were made. That's what I get for standing up for myself. I reported her the same day, but coudln't rememeber her name. I was so upset because of that, but they said they would know who it was based on the time and date I spoke to her. They have a way of figuring it out. Now I know who is was, but they are still employed. The so called apology letter from the head nurse was so cold and sarcastic it was just plain ignorant.

My therapist was helpful, but I switched to my other therapist that I went to when I first crashed with POTS. They are both GREAT, but my insurance covered her better. Both therapists have gotten me through some rough times, and both validated my illness was real.

Reen, it's so much worse then I imagined-----the struggles I ended up with due to this incident. I thought it would be easier to get over, especially when someone else stepped up with a simular complaint. I still strugle with Trust issues, and I think it's obvious in some of my postings today. I couldn't live with myself doing something like that----especially to someone who is sick and vulnerable. I remember being on that hospital campus one day because I was hosting a patient who came to see the ANS doctor there. She was pulling some research from the library and I got disoriented while trying to find where I parked. I was such a mess. It was July, and hot out. I kept going the wrong way, and I don't know why because I had been on the campus 1000 times. When I finally got pointed in the right direction, I slowly walked to my car. My body started to shut down, and I had to walk very slow. A woman was coming from another direction, and I don't know if she was a doctor, but she must have noticed something because she looked at my face, walked by, and then started to turn back towards me, but I lokked at her and gave an, "I'm OK smile". I really wasn't OK, and I felt embarrassed.

I think about times like this, and wonder what this nurse must think about------how she ended up like that. That day is like many days I have dealt with, and I've struggled beyond that with other issues----like PAIN.

There's days when I'm angry and feel like hunting the troll down and telling her what a piece of work she is, and others when I just feel sorry for people like that who have to entertain themselves with stuff like this-------their lives have to be pretty unhappy to want to suck the life out of people like that.

Maxine :0)