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Adjusting Again! (take two)


Guest tearose
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Guest tearose

Hi everyone! This is actually a second try...I originally posted in chit and chat and as the moderator went to move it into Dysautonomia Discussion it disappeared! (kinda like I disappeared for awhile, eh? :huh: )

Anyway, hello to all friends, old and new...I will try to remember what I wrote and also I guess I have to learn what goes here and what goes in chit and chat..

So, last I posted, I was addressing two of my most problematic dysautonomia symptoms.

* For the physical low blood pressure and high heart rate issue: I had been actively using compression from my toes to my waist and sometimes on my torso too. I continued using electrolytes as needed for proper hydration. I began and continued to use Magnesium and Potassium along with daily vitamin and calcium.

*To improve mental clarity I had been listening to mozart for the mind, doing puzzles and most amazingly helpful in my opinion...teaching myself how to write and do things with my non dominant hand.

(I also was regular enough with floor exercise and walking to maintain conditioning)

After about four months of this combined stronger approach I was feeling improved enough to put down my seat cane and get out more. I managed to enroll in a refresher class at the graduate level (I have a masters degree). I managed to land a full time job!

The reality of life with my physical challenges was that the "cost" of working full time was too great. I would come home from work and be unable to cook, clean, food shop, post here, email, phone...I had no social life except that one class a week. I was so tired and wiped out that my body would just fall into bed! I am glad I only had class once a week and I did get an A and the greatest gift from this was to see that my brain was firing up again and I felt a big boost to my self esteem.

The hard part was that I was kinda forgetful and tired at work, and really it was too much for me. ;)

I know I take pride in the fact that I mustered up the courage and willingness to try to work, but I am kinda ashamed that I seem to never learn and am embarrassed to have put myself out there so vulnerably again!

Darn it, I try so hard sometimes.

I just wanted to see if maybe, just maybe I could do it!

I wanted the joy of bringing in some income to my family and have some sense of mature satisfaction that I was a good, contributing member of society. Oh, well. I hope I get over this soon.

It gets me frustrated that not only did social security turn me down for coverage, but they never offered to help re-train me to find a way to work with dysautonomia. It just seems so hard and unfair sometimes.

Sorry to sound so grumpy right now...it's just that when you have to fight for good medical care, fight for your own place in society....well, thanks for letting me share.

Well, now I have to gain my composure and confidence and re figure out what I may be able to do and I think part-time and flex hours are going to be a must!

I am sorry to have been away for so long. I never forgot any of you! I know if anyone understands it would be here, that I was totally unable to eek out any energy for anything else at the time.

That was a big price to pay, I hope you all are doing okay, and I will certainly come around more now.

It hurts to think that I will finally have to admit that a full time job "costs" too much for my physical body.

I love being around people so I don't want to work from home...

I guess I'm just feeling a bit lost right now.

talk to you again soon,

tearose

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Tearose,

I think you are great and amazing!!! I hear what you are saying and I can tell by your post how frustrated, sad and disappointed you are but you deserve a lot of credit!! It's hard to fight like you have had to do and it's so admirable that you gave all of this your best shot and did what you could.

I think it's the nature of chronic illness sometimes to have the ebbs and flows of wanting/wondering if you can do more, trying to do more and when you aren't able or are faced once again with the reality of your limitations there is a period of sadness and readjustment.

I wish I had some great words of wisdom for you. I am in many ways in the same shoes you are. Trying to figure out what I can do (which seems to be very little & I'm not satisfied or happy with it). I've not worked for nearly two years now and I miss it so terribly much yet I also know there is no way I could work anything close to what I could support myself on.

Please be gentle with yourself and know that those of us on this board do understand and we applaud you and your accomplishments as well as support you through the tougher times.

In regards to Social Security...can you re-apply using your last attempt at working as "evidence" you are not able to work? Of course you would need your Dr's support for this as well. Maybe you can discuss that with your Dr's.

Hang in there!

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Guest tearose

Thanks for the welcome back futurehope. Yeah, I know the drill, wipe off the smutz from my knees and elbows and face and pick myself back up. :huh: I just think I spend too much time on the ground with scrapes and bruises! I want to fly again!!!!! It has been so long since I was productive and able to contribute to my family in a way I wish! How much compromise must one do?

I guess after these bruises heal I'll find out...

Hi pooh! ;)

You are so kind. Your words were soothing and helpful.

I'm relieved to hear that others are dealing with work and dysautonomia cause I really can't figure what job I can do with my skills and limitations. Tell me more as you figure it out okay?

I already appealed to disability and they said "NO" in a hearing. I don't have the energy anymore to pursue that. I just may want to go back though and say "okay, smartypants, here I am, YOU guys find me a job I can do!" Really, I just want to do something using my skills and abilities without getting sicker!

Again, after I am feeing stronger I may see things a bit clearer. Now my eyes are a bit clouded.

thanks friends, tearose

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Hi Tearose,

I am happy to see your post but sad that it is because you are feeling sick. It would be nice if we got all healthy and kept posting! Anyway, I have missed your posts because you have such wisdom.

I understand what you mean when you talk about being a useful member of society. I have not really worked in 5 years and I still don't accept it. When people see me they tell me how lively and healthy I look. Even when I am lying down in my wheelchair at the hospital, doctors tell me that I look so healthy. I tell them that the inside is rotten!

What were you teaching?

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Guest Belinda

You know at least you can say you gave it you all and did your best..and to go back to school..GOOD FOR YOU.

Sometimes I feel like giving up completely but hearing your story is what gives me hope..even though you realized you couldn't physically do it all what you did give was your heart /mind into it.

Maybe there will be something you can do..you definitley have the will power and that matters.

Keep your head up and keep it up maybe when your not looking something will take yyou by suprise and be the job you are able to do!!

Hugs-Belinda

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Welcome back tearose. I am amazed by your strength and determination. Maybe full-time is still too much for you for now. Until maybe a year ago, it would have been too much for me too. I am still working three days a week. I hope you can find a way to work without over-doing it. Does your current job require a lot of standing? I know I still could not handle that. And I consider myself "recovered".

Congratulations on your stellar academic performance and for all of your hard-won accomplishments over the recent months.

I've been thinking of you and so glad to "see" you again!

Katherine

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I think giving it your all and finding out that it's too much is alot better than always wondering what is possible.

When someone has a chronic illness its scary to push to hard and I give you alot of credit for trying.

Don't beat yourself up.........reward your self for you efforts. You tried to contribute to the family financially and that shows your love and commitment to them. I'm sure just being you is contribution enough.

Hang in there

Dayna

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Hi Tea..it's so good to see you on the board again!! I'm sorry things got to be overwhelming but you should be very proud of yourself...you clawed your way outa' the POTShole and didn't let it stop you from trying..you are such an inspiration :) !

I know you are frustrated right now but I think it's great that you know you CAN do the work thing...even though working full time took up ALL your energy.

At leaste now you know what you're capable of and this time you can look for opportunities that won't stretch you too thin...

It's good to have you back! :)

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Hi Tearose,

You really gave it the "college try". I think it is great and inspirational that you picked yourself up and worked at it and were able to do what you did. Don't be so hard on yourself. It may take many times of falling down and getting up but it may just be that the times in between will be longer.

Don't give up hope! :)

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Guest tearose

You all make great suggestions, mostly about accepting my limits, not beating myself up, and acknowledging the fact that I at least tried....again.

Thank you for the group hug!

Intellectually I know a lot of this, I guess. I just still can't come to terms that since 1991, I have never been able to return to a regular type of job and just won't let the idea go! Losing at my disability hearing did not help me in this area either!

It is a deeper issue that returns to me when I feel inadequate about helping my family financially because of the permanent changes dysautonomia gave me!

As I figure things out I will share more...

Pooh, thanks for the great link.

Ernie, I've missed you dear! How do you spend your time these days? Are you able to do any hobies or activities with your time? Also, it was not a teaching job I had, it was a job in a medical center.

Belinda, thanks! I hope I find what I am meant to do. It keeps eluding me.

Katherine, thank you for the compliments. I just can't figure the right formula for me yet. It wasn't a standing job, but is was 9 hour days. Way too much!

Dayna, Yeah, I think we push too hard because we allow ourselves forget our limits to survive. (Is that a healthy kind of denial?)

wareagle, Hi! Yeah, I own a potshole suite! Thanks for the encouragement, I am hoping for the "right opportunity" once again!

mom4cem, thank you! I guess I will hold onto the hope but I am starting to think I should purchase a commercial quality set of knee pads and elbow pads to cushion me from my next "college-try".

more than I can express, for letting me get it out and for being there, thank you!

tearose

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Guest Julia59

Hi Tearose!

It's so nice to see you posting.

The only thing you could do was try----you tried your best, your body just can't take working full time, especially with all your other responsibilities. I am proud of you for giving everything you had to stick with it until your body told you it was time to think of other options. Don't over think this, just take what you have to work with, and try other avenues.

As far as social security goes----well let's just say i'm so upset with the SSDI system that I still continue to write my local congresswoman, the state senators---and even Bill & Hillary Clinton. I have been denied twice, and now i'm in the hearing stage. I have an attorney also. SSDI sent me to one of the "appointed" SSDI Doctors. Basically an occupational Doc who has no experience with POTS or any other form of dysautonomia, nor does he have experience with chiari, and chiari related conditions. He lied throughout the whole report. I wrote a letter of complaint to SSDI---and to all the above politicians.

I won't give up! This is what I use all my precious energy for. I'm not even able to grocery shop with help anymore---I am so limited now I could never even imagine working part time. It takes everthing I have just for a social outing of a couple hours.

In my opinion SSDI does everything in thier power to deny us the benefits we earn-----including hiring their bull dog docs to lie on their medical reports. Well, i'm doing everything in my power to have that physician who lied on his report to be removed from the SSDI payroll.

If your gut tells you that even part time work is too much----hire a good attorney and let them do all the work to refile your SSDI. You don't need to use your energy---let them do it.

It is my choice to continue to voice my concerns and opinions to whatever political parties necessary to stop the barbaric and purposefully slow driven practices of the Social Security system. They work slow because they WANT us to give up, so we can go back to work sick and have no quality of life because all our bodies precious resources are sucked dry.

Your a positive person and I applaud you for doing everything in your power to be true to yourself----meaning that you tried everything in your physical/and mental power to prove to yourself that you gave it your all---and then some.

You have to listen to your heart---and your gut. Be good to yourself---and don't beat yourself up for trying your best.

HUGS and BLESSINGS,

Julie :0)

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Tearose -- welcome back! I am sorry the full-time thing didn't work out for you. But please be happy that you can work part time and don't feel as though you aren't contributing to society and to your family income. I work part time and bring a fair amount of money in. Obviously not as much as my husband, but I also take care of our daughter and my husband never has to lift a finger around the house -- I manage to make almost all meals, clean, do laundry, etc. I don't think I will be able to work full time anytime soon, nor do I want to, for that matter!

Just try to figure out what you enjoy doing, what tools you need to do it, and come up with an innovative idea for a job or for a way to work part time -- whether that be job sharing, working from home, etc. You are a determined and gutsy woman, so I know you will make it happen!

So nice to see you're back here.

Amy

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Hey Tea, love,

I think you're awesome for doing what you did- never gve up trying! If it's any consolation- I've just fallen flat on my face again today too- walking like I'm drunk, unfit to go to class, going anyway then sitting like a statue just desperately trying to stay upright...you know the score.

We can dust ourselves down together and pick up the pieces.

It's always better to regret doing something than to regret NOT doing it.

I know that one o these days you'll be back to work in a way that suits you, and have back that independent life you want so much.

Keep in touch :)

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Hi, I understand how you feel about the whole working thing. It's great that you work part-time though. I wish SSI/SSDI would still give benefits if a person works part-time. I wonder if I could ever work full-time again, but in reality no one can live off of working part-time unless they are married,etc.

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HI Tea,

Boy did I miss you. :D However, I knew you were off doing good things and tackling the world! I just hope the world didn't tackle you back too much! :P

I know it's disappointing to realize that a full-time job might be a bit much to handle, but you gave it the old college try and that's what matters most. I think you're amazing for doing all of the wonderful things to improve your body, your brain, emotional well-being and self-esteem. You should be very proud of yourself.

Well, I want to chit chat some more, but it's getting late here, so I'll sign off for now and catch up with you later.

In the mean time I'm sending you some scrumptious cookies and soothing tea. (The cookies are healthy of course, but taste absolutely sinful! Ha! :D )

Hugs,

Gena

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