[Karen]

Hi! I guess I might as well introduce myself. I started checking in on this forum periodically a few months ago, but never had the guts to post anything until very recently. I guess I have become such a recluse that I haven't had the confidence! I have had TOS for at least 6 years now, but in retrospect, have had symptoms for almost 15 years. I have had surgery on left and right brachial plexis, radial nerve in both arms, and denervation on 6 places. (removal of "trigger points") I had a wonderful surgeon, Dr. Orenstein, in Dallas, but he pretty much said that any more surgery was pointless. He recommended that I quit my job and just try to take care of myself. The pain was so bad, and I was so tired of it, that I finally took his advice. I quit last February and have at least had some good days since then. I think it has been at least 6 years since I had a good day!!! I really appreciate this forum because I lost my good insurance when I quit... now I have TRICARE and not many specialists take it! Just in the last week or so, I have gotten some excellent ideas. I have already found several of them to be very helpful, and they are greatly appreciated. I feel like I have gained a little more control over my life and my TOS. I am guessing that most of us are not working...If anyone IS working, what do you do for a living that doesn't aggrivate things? Any ideas, anyone?

[redjpwranglergirl]

Hi Karen!
Welcome to the forum from a fellow Texan. You'll find some people here who are very knowledgeable about TOS. Some have had surgery and some haven't (I haven't and hope to never have to) and there are lots of helpful hints here too. I used to work as a massage therapist but had to leave my job several years ago, after I FINALLY got a diagnosis. The pain became too much to deal with every day after work. I've been dealing with this pain and these symptoms since a car wreck in 1975 (I was 17)- I'm now 49.

[Karen]

where do you live? Do you have a good doctor?

[redjpwranglergirl]

Originally Posted by Karen

where do you live? Do you have a good doctor?

Our 4 yr. old gr'son is on his way down to visit (RUN KITTY! Find a hiding place!) But I'll PM you later with some information.

[DiMarie]

Hi Karen,
I had to retire from police work. I started as a patrol officer and then promoted up the ladder to Chief. I was so thrilled my dreams were a reality. Then an underage DUI hit my cruiser and I had to throw myself from being trapped in the cruiser door. I had retired and decided to go to finish my BA in criminal Justice at almot 50 years old.

So as a grandma, my family was there when I graduated with honors, top 1 % and many honor societies with degrees in Criminal Justice and sociology. A job did not happen, and I knew I could not do full time work, but I did have my notary public commission, a few times a month I had clients. Then an opening as a visitation caseworker opened up a year and half ago.

I monitor "safe" environment visits for children with their parent. Some clients were in prison when the child was born, some have been arrested for child abuse, not their child, many are spouse abusers...where we receive our grant money from for the agency. Many are men that have control issues and try to even do it to us!

It is light duty, but on your toes that parents do not break rules and the child or children have a good visit. The parent can not interrogate the kids to the home life, or Mom, they can not promise them toys, or trips, and for kids that are apprehensive to visit I try to make it comfortable enjoyable time.

It is a bit of magic, and thinking ahead of the conversation. The moveing of tables and chairs is the most physical work.
I do get exhausted having numerous issues and taking care of the family, but sleep a lot, nap a lot just to take care of the family and myself.

But it is rewarding, I just got a bonus I did not expect. I ahve full ssdi, nothing is deducted. The have sent me a letter that I did not show significant improvment in my condition, and the hours worked are not affecting my rate.

So I earn about $500 a month to help my family out work 8-10 hours a week(two 4-5 hour shifts).

Right now Folks cancel with vacations and tow of my clients were arrested and lidges for violations of parole and a spouse abuse...another is in counseling....so I hope it picks up soon. Last pay check for two weeks was only 6 hours.....

But that is my story,
I treat with trigger point injections, TENS unit at night, biofreeze, valium for muscle relaxant, lidoderm partches, percocette as I need it, darvocette for the knee osteo arthritis post surgical. I need more the days I work, I have my hot tub and that is the one thing that helps the best. Its massaging and deep heat to the bone penatrating is theraputic.

Welcome to the forum,
dianne

[Sea Pines 50]

hi karen

wow - is that ever the $64.00 question! it is a real challenge with TOS, isn't it, once you reach that point of no return... well it has been for me, anyhow. i used to work a corporate job, very heavy phones, lots of computer use. no doubt i reinjured myself on a daily basis for years and years. don't even talk to me about the stress, and the commute to and from work every day? forgetaboutit! (i live in LA...)

i volunteer for a not-for-profit now, a children's rights advocacy group established in memory of a murdered child who was near and dear to me. (www.thejoyfulchild.org) but i sure wish i could do a hell of a lot more for the foundation than my body will allow me to, karen. i have neither the strength nor the consistency to be reliable at any level, due to pain and fatigue.

your story hits home. but i have a question for you. i don't understand why, if your surgeon took you off work, he did not follow through with state disability for you. (i assume your injury is not work-related as you do not say you are a W/C case... but if your TOS IS related to that last job [or your sx were exacerbated by it, even], then perhaps that might be something for you to look into as well...)

in either event, SSDI is something as dimarie has said above that many of us have had to look to as a means of surviving with this thing. and with that of course, you would be entitled to MEDICARE health insurance, which i dare say would be a damned sight better than what you have right now. it varies from state to state, no doubt -- here in CA you draw state disability for one year before looking to the feds. but you should get that federal app in ASAP, regardless.

don't mind me, i'm really bossy but i mean well...

and i do realize you may have all of this in the works, karen. i just wanted to make sure you're covering all the bases. the surgeon may not be able to provide anything further for you. he is a cutter and he is done, basically. but there's lots more for you to try. lots more. miles to go before you sleep, kid!--

i'm sure you're aware there are SSDI and workers comp forums on the neurotalk site for you to explore if you've a mind to. and as di says, you can still work even if you are awarded SSDI, as long as you don't make over a certain amount per annum or something like that - and your medicare won't be jeopardized, either, by doing so.

it is my belief that a lot of TOS'ers have a fierce work ethic... so anything you can do to keep that fed is gonna be a good thing. but right now maybe your job is to take care of you! learn about what your rights are, where to get alternative care, bodywork, etc. for your TOS, apply for SSDI if you haven't yet done so (the process can take a long time), etc.

check out the recent thread re MS and TOS. you might find some local MS programs that you can sign up for that will give you some great relief for your TOS. (use the search bar in the upper righthand portion of your screen to find the thread.) and the cost is either nominal or there is no charge, due to the fact that the national MS foundation is so incredibly well-funded.

good thread - thanks karen!

[dabbo]

Welcome Karen! That took alot of guts to quit your job to concentrate on making you well. I hope it never comes down to that for me. My job doesn't require heavy lifting or anything like that (thankfully), but it does require 10-11 hour days; most of that is spent at a computer typing and/or on the phone. My monitors are raised up to about eye level, i have a keyboard wrist rest and a wireless mouse. A huge problem for me is my lack of good posture. Also, my left hand/arm have gotten very weak over the last 18mo, and my fine motor skills are becoming worse; i'm pretty sure all the typing isn't helping. That being said, I've found that taking short breaks from typing to stretch helps, along with posture reminders. On top of that medication, heat, and relaxation techniques help. But i think i need a hot tub

[mucker]

Hi Karen i am mucker from nova scotia i to had asked the same question about jobs. Well i would say the best thing to do is think of things you have always thought interesting or fun but just did not think you could do or didnt have time to do. I have been going through this my self comp wonts me to think of a new carer to go into they are going to pay for my schooling. I am not sure if thats something you would wont to do or could get the funding for if you lived here i could help with that part. Any ways the two jobs that i have come up with and of course doesnt mean i well get to do i am waiting for surgery right now ok back to my thing here. My first choice is a game warden and the second one is private investigator. But here are a few other jobs you could do the pay wouldnt be much but it would get you out of the house. A greeter at wall-mart or some other department store,Host-est,operator at a Hotel or night clerk the last jobs i am not sure what all they would have to do but it might be ok. What i did was go through the job sites on the net and read the descriptions it really helped me think of jobs that i might wont to do. Oh and if it has nothing to do with money then just volunteer at the hospital and retirement homes is a nice way to get out and get your mind off of the pain you have to put up with every day. Any ways i don't know if my babbling has helped at all but i do wish you the best and i hope that things well get better for you. Oh and i just wonted to say way to go with taking back some of your control I have just started to get some of my control back and god it does feel good. I guess its one of those things we just take for granted until its gone for me it felt like one morning i woke up and took a look around and hit rock bottom in my life. But now i know what happened and i am tyring to take it back. Mind ya a friend of mine pointed out it took quite some time to lose my control it well take time to get it back. This time i think i well make a few tweaks here and there ha ha ha

[johannakat]

I am currently off work, i am an engineer who sits in front of my computer all day. I have been thinking of things i can do within my current company, but i have worked 24-30 hours a week for many years and the things i want to transition to are not part time jobs, unfortunately. I am not really sure where this journey is going to take me, but i do know that i will not have much of a life if i go back to my computer job, so i better figure out something else. Afew things that have come to mind are:


1. Teaching (either high school math/science, or something within my company. we have a big 6sigma initiative and the black belts do a lot of supporting projects and thinking- not much computer work) I may also be able to do more of the manual work or running machines and handling wafers (i work in semiconductor crystal growth)

2. counseling- either go back to school for a degree in psychology or social work, then concentrate on assisting people with long term disabilities like us, or ADD kids which i also happen to have experience with

3. gardening of some sort- call me crazy but the one thing i seem to be able to do is tend my garden- would have to have someone else to lift anythign heavy or do serious digging, but set up correctly i could grow herbs for restaurant supply or flowers or soemthing else. we would have to move for this as i live on a 5000 sq foot lot in a big city, but I do love to grow things...jokingly mentioned to my husband that maybe it was time to go off and buy that windmill farm in the country....!

i am still thinking, maybe i will come up with some more.

dr j said to think of jobs where you were using your brain insterad of your body...that helped me some.

cheers...
johanna

[Karen]

It is funny that you mention gardening. I LOVE my garden, and it doesn't seem to aggrivate my TOS - I stay away from it during the bad days, though. I can't mow the lawn, but I can dig small holes with a trowel, plant, and pull weeds. As long as I don't have to hold my arms up. It is very rewarding and peaceful. I feel like I have accomplished something!

I have not begun the SSI process yet. I have heard the judges in TX are brutal and flat out abusive sometimes. I guess that I have been in denial as well. I kept thinking that I would start to be "normal" after a while. I am starting to see that is probably not going to happen. It seems that even small tasks bring on flare ups that last 2 or 3 weeks. I never know WHAT is going to bring it on! I just know I can't go back to living in the CONSTANT pain. I feel like I can handle it as long as I know it will pass, or at least not be as intense. When I was working, the intense pain was there 24/7. Looking back, I really don't know how I made it so long.

I have considered some type of volunteer work, something that will get me away from my own problems and focus on helping someone else. We can get by fairly well on one income - the bills are paid, anyway, not much extra. It is just really frightening to be to be so dependent on someone else!