Must be patient :0)

Since there were no replys, I’ll reply to my own original message to pass the time away. There will always be different rules for blue & white collar workers. It would be nice for everyone to work on the same level but everyday is different. Have co-workers who got a bump in pay recently and all of a sudden, I’m “invisible”! Even w/the recession going on in the world, I have been making brisk sales on EBAY. Wish there were more companies competing against EBAY. EBAY calls the shots (beginning, ending & Paypal fees offsets my money gains). Are there any GBS’ers who make money on the side to make ends meet? Peace “+”.

[QUOTE=mdm]Hi Udaman

I’m sorry about your problems at work. I’m working part-time at the moment and it’s gonna take months before I’m fit enough to go back to full time. I see the doctor at my workplace once a month for a review and we agree my hours together. I’ve been able to cope financially thanks to my savings, a bit of help from the government and tightening my budget. I live in England so I don’t know how the system works in the US, sorry I don’t have any advice but I just wanted to show my support. It’s hard enough having to deal with GBS, then we have to think about bills, life’s not fair that’s for sure.

Keep fighting[/QUOTE]

Hi MDM-

It’s great hearing from a fellow GBS member! My arms and hands are coming back gradually but sometimes too slow for me. I’m able to carry 40 pounds but the job requirement states 50 pounds. I have until August 2009 to reach that feat or my full time job will go to another employee. How’s the Chinese food in England? Don’t be a stranger, hope to hear from you down the road.

[QUOTE=D.U.]Hello again,
Yes, I remember you from a few months ago when you were sharing your problems about your boss. I suppose the boss is fully recovered in health by now. :rolleyes: But here you are, with GBS, and trying to do your job, with very little understanding or concessions in your present condition.

I’m dealing with the same thing myself. I keep going too, no matter what, even though I’ve got pain and crippling and lots of damage to my body and mind. I’m a music teacher, and GBS has ruined me. I still have a few students, and I’ve always believed I should make the best of things, so usually I don’t get too depressed, but sometimes I do, because I don’t know what’s going to happen to me.:confused:

Just be faithful, and do your best, as you already are. It bothers me too when others get the breaks, and I get disaster, but of all the battles we fight now, the biggest one is in our minds.
We have to believe that we can still live, and that it’s all going to work out.
We have to stay positive and keep the demons of depression and discouragement at bay. We have to keep trying to find ways to cope with stress and with the situations that task us so severely. You’re not alone; may God Bless You with encouragement and renewal. I wish you well!
–Donna[/QUOTE]

Donna-

It’s a pleasure meeting you! Wow, two different replies all of a sudden. I just read your story and I know exactly how you feel mentally and physically. In two more years, I’ll be 50 years old. I used to strive on life and I can handle any situation that other people might have but this time the GBS situation picked me. I haven’t thrown in the towel yet. As long as I can wake up the next morning, there will always be a chance for improvement. I’m from California, where are you from? Take care.

It’s still winter weather in California. Getting yard sale donations (great way to practice talking to potential customers on all levels) for May – Takes my mind off work – Due to the recession, had to let my Caregiver go – Took him out for lunch, saw a matinee & gave hime a farewell cash donation for his dedicated work the past 2.5 years of service – I always wondered w/so many donations going to Salvation Army, etc., who has first crack at what comes in before they decide on what goes out? If I was working at their sorting plant and see something of real value, what is the policy for the employees (or mangers) to buy directly? Anybody knows? Peace “+”

Hi-

I believe that “Global Warming” have been a factor in the weather all over the world. The weather was 35 degrees last night. I walked outside my back yard and everything in the garden is beginning to bloom though. How old are you? How long have you been stricken w/GBS? What parts of the body were you stricken with? I can’t afford to travel to England. I always fathom eating fresh, greasy fish & chips wrapped in newspaper w/salt, vinegar and craemy tartar sauce. Have you ever been to the United States? If I give you my personal e-mail, is it possible to e-mail a photo attachment of a chinese restaurant in England? I have a BS degree in Culinary Arts but that was so long ago (graduated in 1983). Got to get ready for work. Don’t be a stranger. Write back when you have time. Peace “+”.

Life rehabbing (not recovering) from GBS will go on till my last dying days. You have to wait for opportunites to open and proceed w/caution. Patience is a virtue as the right time to spring into action will arrive eventually. Everyday I pray, releasing everything from my mortal soul to relax and gear up for the next morning. When the eyes open, another chance to achieve another notch on the belt towards being 100% normal again. I read all the current stories on this GBS website and gain a world of knowledge. It’s just to bad that not too many GBS’ers are into collecting like myself. Life goes on …

Wolfdolphin-

Hi-

Pleasure to meet you!

In my state (California), I checked out most of my job issues w/the Hastings Law School in S.F.

Once a week, they have free advice for those who are handicap and low income (Lucky me, I meet both standards).

It’s bare bones and other professionals seek help also but the law advice is free and they treat you w/respect to a degree (it’s not like waiting in line at the DMV or the Social Security Office).

It’s true that old style managers w/clout out there in the current work force need updated training procedures but they have laws to protect them also and liability is on the top of their list to prevent in a working government agency.

On EBAY, I sell almost everything except the kitchen sink (half of the items I have are donations from family & friends).

My EBAY sellers name is collector945776q4n (look it up and see the items I currently have on sale).

What do you collect?

How long have you had GBS (how old are you?).

Not trying to pry into your life (it just gives me more information to talk to you on a comfort level).

I just mastered mowing the lawn again (I still need assistance pulling the start cord from my neighbor who is 66 years old but understands my lack of hand grip skills).

Don’t be a stranger and e-mail back when you have time.

Peace “+”

Hi-

I was surfing through the GBS website and just found out about your daughter.

Since you are only 35 years old, your daughter must be very young (& strong).

My wife is my chief caregiver since day 1.

We recently celebrated our 23rd wedding aniversary.

There are times when she comes home from work tired as a dog but still finds time to make sure if I need help on my daily rehab exercises.

Everyday is different Yo can’t push the button everyday, give it a rest) but as long as your out look towards battling GBS is positive and being healthier towards the goal of 90% or better), the day goes by much faster.

Mowing semi wet grass is no fun but the smell of fresh cut grass is reward in itself.

I live in California, where are you from?

Got to go, rehab calling me big time.

Peace “+”.

Hi-

Your daughter was affected from the feet up. Mines was affected from the face down to the waist. She’s young and has a bright future ahead. Dos she plan to go to college? Old dogs like myself (48 years old) have more bark than bite but is not ready for the slaughter house yet. Keep up the rehab and things will turn around for sure. Getting ready for my City’s annual yard sale. Need to make extra money this year to make life more enjoyable.

Take care!

[QUOTE=wolfdolphin]My daughter is 17 and she has been doing alot better it was tough and she did have her bad spells but we got her through it.Her goal is to be wearing flip flops by summer right now she wears AFO’s if we go to the store or somewhere where she has to walk alot,but around the house she doesn’t wear them. When she has her days that her feet are hurting we tell her it’s time to relax.She has been good as far as knowing how far she can push before she gets exhausted.

Congratulations on your 23rd anniversary that is great.

I agree with the mowing wet grass thing but your right there is nothing better than opening the windows and letting that fresh cut grass smell in

I live in Arkansas so I still have a few months to get the yard in order before it gets to hot to work outside.

Enjoy the rest of your weekend.[/QUOTE]

Hi-

Nice to hear from you again!

I wish you the best in your recovery and rehab.

It seems like everybody is younger than I am on this GBS website.

Remeber me down the road for the photo of the Chinese Restaurant.

Having problems w/my medical insurance.

My PT is asking for different strengthning exercises and testing for me but the medical insurance says it unnecessary and won’t pay for it.

Another road block and tons of future paperwork, etc. towards my road to being 90% (or better).

Take care!

[QUOTE=mdm]Hi Udaman

The weather has been good in the last weeks, finally we got some sunshine after a very cold winter.

In answer to your questions, I’m 31, got GBS/Miller Fisher variant last year in May, the worst affected parts of my body were my throat and eyes. I was intubated for one week. You’re right about the greasy fish & chips, it’s a very popular dish over here. I’ve never been to the States, I originally come from Italy but I’ve been living in the UK for 10 years. About your request for a picture of a chinese restaurant, sorry but I don’t have time to do it right now, if I can do it in future I’ll let you know.

have a good day[/QUOTE]

4/1/09 – The aniversary of the 1st day I woke up in the hospital w/GBS.

Man, has it been four whole years already?

The memories will always be there to my dying days.

The weather in California is starting to heat up.

Luckily, GBS doesn’t affect the brain like a heart attack or stroke.

Can’t afford to let negative people get in my head and push me around (you got to fight to make it right!).

I believe it’s called “Poetic Justice”!

Got to go walk to the bus stop, then walk to the BART station and finally get to work.

You have to forge ahead because being staionary and falling behind is not accetable towards being 100% normal again.

Peace “+”

[QUOTE=udaman]Hi-

Nice to hear from you again!

I wish you the best in your recovery and rehab.

It seems like everybody is younger than I am on this GBS website.

Remeber me down the road for the photo of the Chinese Restaurant.

Having problems w/my medical insurance.

My PT is asking for different strengthning exercises and testing for me but the medical insurance says it unnecessary and won’t pay for it.

Another road block and tons of future paperwork, etc. towards my road to being 90% (or better).

Take care![/QUOTE]

Hi MDM-

Just out of curiosity, were any parts of your body affected from the shoulders down from GBS/Miller Fisher?

What exercises are you doing for PT rehab?

Are you married (if not, is your family and friends helping you out?)?

Got to go, having dinner.

Peace “+”

It’s going to be 90+ degrees in California tommorrow. I hate the hot weather! It makes rehabbing harder to do as the sweat rolls the entire body down like a rushing river. Summer time is around the corner and that is no picnic either. Recovering GBS’ers always must remember that we are all human and must take a break once in awhile. I was helping out carrying the groceries inside the house and one plastic bag had too much weight in it and caused a strain (twinge) in my right bicep area. Luckily after 5 days, it feels much better. I’m going to a BBQ next weekend and the menu consist of vegetarian hot dogs, green salad and alot of healthy foods (people are more self conscious on health issues to reduce health problems in the future) – That’s a great idea but not everybody thinks that way – Having a variety selection pleases everybody in the party – Don’t dictate and let the party carry on for a few hours.

Another road block has arrived. Social Security Disability has contacted me by mail. Since I am working part time but make more than $640.00 per month (currently), it’s a “No No”. They will soon terminate my disability checks. Same story w/my work place (no extra money in the budget to offer me) for the past two years. The jobs search out there to make ends meet is a joke. Pressure from all four corners of the invisible box. I’ll be 48 years old in August but my life resembles that of the movie “The Wrestler” w/Mickey Rourke. Airing out serious matters is always good for the soul (mentally & physically) but it’s only for a short period of time.:mad:

Hi-

Sorry for the delay in getting back to you. It’s been awhile since anybody replied back to me. EBAY is great except for the beggining and ending fees along w/the Paypal fees after each sale. Want to still hope for more hours towards full time status and stay away from Medicaid and food stamps. Will be having another yard sale towards October. No matter what recession we are going through, people tend to open their purse strings towards the holliday season. Wife thinks it’s great as long as the extra clutter (I call it collectibles) in the house is gone. Back to the grind, it’s been a pleasure meeting you!

The year is half way over and the hot summer season is around the corner. I got a lead to be a part time Security Guard (due to the recession, jobs are hard to come by). If I pass all the tests, get finger printed and get my guards card before the end of the year, another huge road block has been pushed aside. I’m getting much stronger (still worry about over doing it at times but some times the pain is good, it’s a muscle w/nerve damage that hasn’t been used in awhile). Sometimes I get a little lazy in rehab because the pain isn’t as intense anymore, just a slight twinge of fatigue. Just like the novel “The Scarlet Letter”, the invisible letters of “GBS” and “L” (liabilty) will always be branded on my chest but I live for a better tommorrow as another night comes to a close. Peace “+”.

Hi Stormy-

Pleasure to meet you!

It’s always a good sign when someone else on the GBS circuit replies to my messages once in awhile.

Just got our front lawn landscaped.

Everytime I walk out of the house in the morning and pass the front lawn, it’s like a breath of fresh air!

How long it will last, I don’t know but it’s my responsibilty (along w/my wife) to keep it as pristine as possible.

Take care & don’t be a stranger.

Peace “+”,

Udaman :0)

The search for another part time job has gone again. I was hoping to be a weekend security guard but the training fees, etc. in California was close to $300.00 and no guarantee of a job. The recession is another 5000 pound gorilla on my back. Talking to my current HR Director for more hours is like talking to a brick wall. Glad 2009 is almost over. Soon the cold weather will seep in California and my hands and fingers mobility will be tested again. Peace “+”.

Next Monday will be the most important day of my life since I started working again from June 2007. I have a one on one private meeting w/the Executive Director at my current work place. The person who took over my job when I was sick was fired over repeated alcoholism problems. They hired a temp for next week but I am capable of working more hours, etc. period. Just have to resolve alot of major issues, etc. Might even charge the company w/discrimination charges if I don’t get a chance to prove myself. Hiring a temp and not telling me about it first was wrong! Don’t know if the ADA or my union will help out or not. I’ve come a long way crossing many road blocks and now hopefully there is a light at the end of the tunnel.

The person who took over my job when I was ill was terminated from his job today. Alcoholism played a huge part (along w/his pancreatis, excess smoking and bad eating habits). The meeting went well w/the Executive Director. All the cards have been dealt. I’m ready and able to kick down the door for more working hours now. On their side, it’s always the issue of Worker Compensation/Liability. On my side, I have the ADA, Union and need be, lawyers (discrimination law suit?) and my wife to end this madness. Great script for a future movie but finally the “underdog” shall prevail! I’m actually beginning to feel free and normal again (like the good old days before GBS got in my way). Not sure how many other GBS’ers are reading my story. Hoping to get one feedback from anybody to get a extra boost to forge ahead.

I’ll find out in less than two weeks if my work place will offer me 10 more hours per week. The meeting w/my supervisor was professional as can be. The agency will be hiring a part time worker (carrying the heavy stuff that I can’t do for now). Next year, I’m very confident of lifting 50 pounds but will it be too late? Even though I pass the grueling 6 hour driving test & evaluation at a cost of $555.00 last year (no help in offering to pay to off set the huge fees from my agency), there is still liabilty issues on my mobility during driving time for the agency. When the door slams in your face again, the true mental & physical spirt of a human being must suffice again against all odds.

After over 2 strenous years of retooling and retraining my body (mentally & physically), I received the green light for 10 more hours per week! Up to 30 hours and the countdown for 40 hours begins next year. I earned the right to get back into the rat race of the human work force again. Hoping to finish off this bad dream and bring closure finally to my life once & for all. I would say that 90% of my peers gave me no chance of combating towards a normal work life. I proved them wrong. I caught the flu bug this week along w/my wife (sucks big time on the holiday and shopping season) – Been cold here in CA but the aura of goodness shines brightly from my body!

Take a deep breath! Got to maintain my focus (mentally & physically) to lift the required minimum weight of 50 pounds for my final job requirement task towards getting full time work status of 40 hours per week. I have less than a year to get the job done. It’s been less than 2.5 years of rehabbing (after GBS) to get to the rebirth of my life again. There will always be ignorance & prejudice from the outside world but I am strong enough to conquer all at this point & time.

Dear Dawn Kevies Mom-

Believe this is the first time I ever received a reply from you.

Pleasure to meet you!

Thank you for the extra words of encouragement! I’ve read about your son’s battle w/GBS in the past & present and hope 2010 will definetly be a better year for your family and you. As the years go by, there will always be ignorance & prejudice in humanity but a strong will and determination will guide us ahead. Peace “+”.

Gary-

It’s great talking to another new person here on the GBS internet! Sorry for the delay in getting back to you. Hope you will win your case down the road. No one has to go through what we have endured in the past and present. I pass the test for carrying 50 pounds (waiting for my PT to type a official document w/their letterhead on it to submit to my supervisor soon) two weeks ago! Hopefully by this year, I will retain my full time status as a full time – 40 hours per week worker and bring closure to a ugly chapter in my life. The other person that was on AA quit last month but the Union got him back in one last time. Will hopefully find out towards the end of March if he will have a job or not. I heard it through the grape vine at work that there are still co-workers that still have doubts (fears, ignorance, prejuice, etc.) on my driving and work ethics. I have the documents that prove in my favor and hopefully the “GBS Angel” will be my side for one more roll of the luck dice of life. Hopefully my employer will think straight and we don’t have to settle a descrimination suit.

Peace “+”

On 4/1/10, it will mark the 5th aniversary of the first day of having the GBS illness – It’s remarkable that I can still remember day 1 to current – Still knocking on wood that there is enough good luck left in the tank to continue on the march to kick down the door & retain my 40 hours/full time job back – My wife just switched to another full time job and that is a major plus in the bank account – Will be having my annual yard sale in April (this time, I will help carry and setup w/less assistance from family and friends) – As time goes by, still praying for greater health, greater wealth and to win the CA Lotto (minimum of $1,000,000/maximum of infinity) – Life is good for a change …

Hi D.U.-

It’s a pleasure to meet you.

It’s raining like “cats & dogs” here in California.

I’m getting back to swinging a baseball bat for the first time in over four years now.

I used to hit the baseball about 375 feet but it’s been reduced to about 150 feet for now.

Just gripping the baseball bat is a miracle in itself.

I used to wield a 36 ounce baseball bat but it’s been reduced to a 25 ounce weight for now.

GBS got me in the worst way ever but for some strange reason, I’m still kicking and trying to be as normal as ever!

Not sure on what your story is (GBS or CIDP), but I wish you good luck in your recovery.

Peace “+”

After almost three years of working part time, the miracle has just happened! A co-worker has quit in my department and I am applying for full time status. I shoud get it because of seniority. I’ll be working w/the other co-worker (you read him in my past letters) – It will be no picnic but just getting the gorilla off my back is worth it’s weight in gold! He still drinks, smoke, over eats and now the next problem in his life -Swelling of the ankle/feet area (cause is excess fluids in that area where it is not circulating right. Will see in the next few weeks for a change in my life once in for all.

I’ve done it! Finally, since 4/2005, I knocked the GBS gorilla off my back. It was very numbing at first but reality kicked into high gear. No time to relax … Must focus to prove that I am worthy to continue on w/life … “PEACE” “+”

Hi Dawn-

Pleasure to meet you.

My co-worker got “cold feet” and decided not to take the new job.

I felt numb all over thinking it was a joke.

Now it’s kind of awkward working w/him at this point.

I guess the key word here is “frustration”.

How much patience can one GBS survivor endure (again & again!).

Take care …

Hi Guskno-

Pleasure to meet you! Read your reply. You are correct. I am speaking w/my union rep and will be filing a grievance in the next couple of weeks. My HR director says “I took longer to recover (one extra year) and lucky the company gave me a second chance” due to my longevity of working at the same company for over 20+ years. In the current time span, the person who took over my job (part time) was rewarded w/full time status. He is at a halfway house recovering from drug & alcohol as we speak. The HR Director keeps on pointing out that my arms don’t look right and worries that I will get hurt carrying 50 pounds. Actually that can be pointed out as discrimination because the HR Director is not a medical expert to support that theory. I still believe that a miracle will happen this year and justice shall prevail! Take care :0)

Hi Jessicah-

I had a temporary part time job (20 hours per week) to see my progress towards working full time down the road again (The HR Director told my wife & I that my job will be there if I can prove that working 40 hours per week will be no problem). Now The HR Director is stating that it took too long for me to come back and the job was offered to the other employee full time. There was actually no talk of a time table. Just trying to figure out if the HR Director went back on their word). There is no extra budget for two full time supply clerks at this time. I’m trying to get the seniority rule intact. I hoping that my company will reinstate my 40 hours per week and give the other employee 30 hours per week. Confusing but got to continue chugging along.
Appreciate your feedback. Take care :0)

As I am gearing up for 2011 (I have a maximum of 11 years to go before I can retire), have you ever worked w/someone who believes in team work but in the end it says the same thing over & over again “This is how I believe things should be done”? Employees who kiss his a– gets better perks around the agency. We sometimes argue (i believe he enjoys it as a sick way of passing time at work) and it gets to a point of a shouting match over & over again. He is a dictator (believe his motto is “my way or the highway”. He reminds me of James Cagney in Mr. Roberts & Humphrey Bogart in the Caine Mutiny. Recovering from GBS and now hitting the speed bumps and road blocks towards a sane working environment is very trying each & every working day. He makes a huge salary and don’t think he will be moving on for a long time. Oh well, it gives me time to get the bad karma in my soul and start fresh again tommorrow…

Hi Yuehan-

First time I ever spoke to you.

We have something in common (can’t pull the start string on the gas lawn mower either).

Next year we are getting rid of the grass for good.

Thank you for replying.

I actually have a minimum of 2 years to a maximum of 11 years to retire (the longer I stay, the more money I would receive after I retire).

Overall, my chances towards the end of this year (or early next year) of getting the last 10 hours per week (full time status around the corner) is good.

One employee in my department wants to quit so bad but the job out look is so bad at this time.

The other employee has current health issues at this point (he starting to complain about all the pains (physical & mental) in his body.

Everytime the Office Manager from “Hell” is not at the office (holiday, sick leave, etc.), the atmosphere at the office is at peace again.

Take care “+”

Hi Pat G –

Peasure to meet you!

I can relate to what you are going through.

Every individual who has GBS recovers differently.

I’m recovering since 4/2005 and I still can’t make a fist on both hands.

Every time you wake up in the morning, there is hope.

I would work harder on my rehab/PT assignments if it assures me 100% recovery but that is wishful thinking.

I finally put on a pair of brand new tennis shoes and tied a granny knot each shoe (all by myself/I did use a pair of pliers to tighten the strings though)!

I wish you the best of luck and try not to get down because of all the road blocks ahead (stay strong, positive & focus).

Peace “+” …

Hi Pat G.-

My wife says under ADA law that your company has to give you at least one year to get back to health to retain your past/current job. If you can’t do your regular job (part or full time), your company has to at least attempt to reassign you to another job opportunity. If you can’t do that, then your company have no other choice but to let you go. Need feeback to solve the mystery.

Take care,

Udaman :0)