Re: work issues - attn Tracie

[Guest guest]

All,

I know a few people at work who had sarcoidosis on an x-ray probably at a different time in their life but the damage showed up on the x=ray and they never knew that they had it in their life.

So some people have been affected and it must have burned out.

I had sarcoidosis of my lung in 1980 and my lymph nodes when I was 30 and I only had bouts of erythema nodosum in my legs during stressful times. I have not had a major attack until now and I am 55. This time it was NS and optic neuritis.

KatSee what's free at AOL.com.

[Guest guest]

Rick,

Not sure how you get sarcoidosis but I did work at the VA Hospital where veterans had sarcoidosis and so did my girlfriend. I did get sarcoid in my lung and lymph nodes and my friend got it in her eye.

Yes, you should be eligible for FMLA. It is where your sick leave is protected; meaning that they cannot use it against you and this is a law. All my time off in January and February when I lost my sight and was trying to recover and get back to a workable state was covered by FMLA. You can even put it in your browser. You need to have your doctor complete the form and send it in to work and then they notate all leave as FMLA. There is a certain percentage of hours worked in the previous year and how much time you can use toward the FMLA. But FMLA is also used by a spouse if they need to take care of you or for your children. I work for the USPS in Personnel so that is how I know the regulations. But, you can read up on it by putting it in your browser.

KatSee what's free at AOL.com.

[Guest guest]

Tracie, Thank you for your reply. I never heard of FMLA, I will look into it. I work for the government at a scientific laboratory, Biology department, Tech support for X-ray Protein Crystallography. I wouldn't be surprised that I caught it there. Anyway, there are specific issues involved, I need to get back to work before my sick time runs out (mid July) and stay there at least until next March. I just started Methotrexate last week and I'm on Neurontin and Predisone. I've learned to deal with the pain and discomfort and will have to deal with work. They are very understanding and will put me on light duty assignments. My real question here is has anyone in this group made a full recovery from using any of these meds? And how long did it take? It's hard keeping a positive frame of mind when I wake up the same way every morning, in pain. I was always healthy and had never been in a hospital since I

was 5. Thanks again for your reply. Ricktiodaat@... wrote: In a message dated 6/15/07 4:45:16 PM Pacific Daylight Time, jack11973 (AT) yahoo (DOT) com writes: This is still all new to

me, hope you don't mind a lot of questions. How long was it after you started the Cytoxan that you felt results? Were the results significant? I'm in a sticky situation here....it's get back to work by July or risk loosing my job and home. Have a great weekend!RickRick,Have you filed for FMLA? This is the Family Medical Leave Act-- that you can use to protect your employment when YOU or a Family Member (spouse, parent or child) is unable to work or take care of themself due to serious illness. If you have not filed-- do so!!!!!!!!I know that it is so very hard when you go thru this process. Any of the immuno-supressants take time to become effective. They have to build up in your body, and I know that Cytoxan is serious chemotherapy-- and will

knock you on your butt for a week afterwards. Some of the other choices-- Imuran, Methotrexate, Arava, Enbrel, Humira or Remicade-- have less side-effects- but you'll still feel extremely tired and worn out. The only way to deal with the exhaustion and fatigue is to listen to your body, and when it says rest-- you rest. What kind of work do you do? Are you a union employee? Do you have State Disability Insurance, or Long-term Disability coverage? You might want to go to the ARCHIVES and read up on the posts on SSDI procedures. There a a gazillion posts on this issue-- and alot of good info. Many of us have been where you are-- and we truly understand the predicament that you're in. Work with your creditors-- call them, explain that you are sick, unable to work, can they drop the interest rates, lower your payments, postpone (extend) payments over several months-- most will work with you. They don't want

your home-- they'd rather keep you in it- and sometimes a phone call is all it takes.Take care, and don't worry about asking too many questions-- that is what we are here for. TracieNS Co-owner/moderator**************************************See what's free at http://www.aol.com.

Building a website is a piece of cake. Yahoo! Small Business gives you all the tools to get online.

[Guest guest]

Rick,If this comes twice then my computer is messed up...just started a message to you but disappeared! My 22yo son's best friend's dad has had sarcoidosis since he was in his 20's...he's now in his 50's and has never had a problem with it. I believe it was discovered by a chest x-ray and then a biopsy...the x-ray I think was part of a physical. Tracie is so knowledgeable about this disease. We are blessed to have her helping us. Blessings,BeckyRick Jack wrote: Tracie, Thank you for your reply. I never heard of FMLA, I will look into it. I work for the government at a scientific laboratory, Biology department, Tech support for X-ray Protein Crystallography. I wouldn't be surprised that I caught it there. Anyway, there are specific issues involved, I need to get back to work before my sick time runs out (mid July) and stay there at least until next March. I just started Methotrexate last week and I'm on Neurontin and Predisone. I've learned to deal with the pain and discomfort and will have to deal with work. They are very understanding and will put me on light duty assignments. My real question here is has anyone in this group made a full recovery from using any of these meds? And how long did it take? It's hard keeping a positive frame of mind when I wake up the same way every morning, in pain. I was always healthy and had never been in a hospital since I was 5. Thanks again for your reply. Ricktiodaat (AT) aol (DOT) com wrote: In a message dated 6/15/07 4:45:16 PM Pacific Daylight Time, jack11973 (AT) yahoo (DOT) com writes: This is still all new to me, hope you don't mind a lot of questions. How long was it after you started the Cytoxan that you felt results? Were the results significant? I'm in a sticky situation here....it's get back to work by July or risk loosing my job and home. Have a great weekend!RickRick,Have you filed for FMLA? This is the Family Medical Leave Act-- that you can use to protect your employment when YOU or a Family Member (spouse, parent or child) is unable to work or take care of themself due to serious illness. If you have not filed-- do so!!!!!!!!I know that it is so

very hard when you go thru this process. Any of the immuno-supressants take time to become effective. They have to build up in your body, and I know that Cytoxan is serious chemotherapy-- and will knock you on your butt for a week afterwards. Some of the other choices-- Imuran, Methotrexate, Arava, Enbrel, Humira or Remicade-- have less side-effects- but you'll still feel extremely tired and worn out. The only way to deal with the exhaustion and fatigue is to listen to your body, and when it says rest-- you rest. What kind of work do you do? Are you a union employee? Do you have State Disability Insurance, or Long-term Disability coverage? You might want to go to the ARCHIVES and read up on the posts on SSDI procedures. There a a gazillion posts on this issue-- and alot of good info. Many of us have been where you are-- and we truly understand the predicament that you're in. Work with your

creditors-- call them, explain that you are sick, unable to work, can they drop the interest rates, lower your payments, postpone (extend) payments over several months-- most will work with you. They don't want your home-- they'd rather keep you in it- and sometimes a phone call is all it takes.Take care, and don't worry about asking too many questions-- that is what we are here for. TracieNS Co-owner/moderator**************************************See what's free at http://www.aol.com. Building a website is a piece of cake. Yahoo! Small Business gives you all the tools to get online.

Need Mail bonding?Go to the Yahoo! Mail Q&A for great tips from Yahoo! Answers users.

[Guest guest]

Rick,

Just a quick addition to Kat's info. Check with whomever is your

benefit administrator to see what benefits you have. When I left my job

on disability - I had signed up for a disability policy that is

currently paying me 60% of my salary. I have not yet qualified by SS

disability but am working on it.

I am not sure of all the programs the government offers you but it might

be worth checking on.

Terri G

>

> Rick,

> Not sure how you get sarcoidosis but I did work at the VA Hospital

where

> veterans had sarcoidosis and so did my girlfriend. I did get sarcoid

in my lung

> and lymph nodes and my friend got it in her eye.

>

> Yes, you should be eligible for FMLA. It is where your sick leave is

> protected; meaning that they cannot use it against you and this is a

law. All my

> time off in January and February when I lost my sight and was trying

to

> recover and get back to a workable state was covered by FMLA. You can

even put it

> in your browser. You need to have your doctor complete the form and

send it

> in to work and then they notate all leave as FMLA. There is a certain

> percentage of hours worked in the previous year and how much time you

can use

> toward the FMLA. But FMLA is also used by a spouse if they need to

take care of

> you or for your children. I work for the USPS in Personnel so that is

how I

> know the regulations. But, you can read up on it by putting it in your

> browser.

>

> Kat

>

>

>

> ************************************** See what's free at

http://www.aol.com.

>

[Guest guest]

My real question here is has anyone in this group made a full recovery from using any of these meds? And how long did it take? It's hard keeping a positive frame of mind when I wake up the same way every morning, in pain.

Jack,

I've used and continue using Methotrexate, Plaquenil and Remicade. I'm also on 800mg of Motrin 3x day, plus Flexeril and Effexor XR. I also have to supplement the Folic Acid because of the immunosuppressants. You too, should be on at least 1mg Folic Acid daily. MTX can cause pernicious anemia-- as well as all the other meds also deplete the B vitamins -- so it is essential that you be adding this to the program.

Now-- as for a full recovery-- I have had sarc for 17 yrs, the first 5 yrs, I was on high dose pred, and that kept it somewhat at bay. I went into remission for about 5 yrs, then it came back with systemic arthritis, pulmonary and iritis, as well as the lymph and executive function (frontal lobe) of my brain.

When the MD's put me back on pred, they really did me a dis-service. When sarc is so systemic, and you've already done the steroid thing-- it just seems to be a coverup at that point. My original Pulmonologist had said if it relapsed, don't let them put you back on pred-- but the new pulm said "hey, it worked before, it'll work now.."

I ended up with extreme hypertension, diabetes, cataracts, and more body pain than I could have imagined. so we got me off the steriods, and went to Imuran, then to Arava, and those sent my liver into fits. So we went to Plaquenil, and that has helped my lung function. We added MTX and that was helping the body pain, but not all the neurological symptoms. So I got into a Remicade clinical trial, and I did get the drug. It helped my arthritic pains and that "inside" the bone pain- tremendously. It also made it possible for me to get off my supplemental oxygen.

I still am having progressing problems with cognition stuff-- so the neuro is not totally under control. It is definately better, at least for a couple of weeks each month. I do have to get the Remicade infusions each 28 days-- and we've had to increase my dosage to 7mg/kg.

I am not able to work, but at least I can still function- - and much better than where I was 18 months ago. For the most part, I make more sense now-- as compared to a scrambled brain then. I do know that with the increasing dose of Remicade-- that it takes longer (5 days after the infusion) for me to feel human. Then I have 18 days or so of feeling somewhat better, and the last few days prior to the next infusion- my body and bone and lymph pain is back with a vengence.

As for a full recovery-- once you get sarc you will always have sarcoidosis. It may decide to go into remission-- and it is imperative that you listen to your body. If the old bod is saying rest-- REST!

I highly recommend the MSM powder for that pain you're speaking of, as well as watching the sugars and the hydration. That will make a huge difference for you. HUGE!!!!!!

I know how hard it is to stay "positive" and some days we just want to slap the people that tell us to buck-up. I think that is why we have to take the steps of being very pro-active in our care, as well as doing what we can to help our bodies-- diet and exercise being high on the list.

I've found that the book SUPERFOODS RX is an excellant guide for eating correctly. It takes the different foods and puts them together in such a way that vitamin and mineral synergy is working together in the way that our bodies need to best utilize the energy.

The MTX will help tremendously (if you took it away, you'd know quickly how much it had helped) even though it's going to take a couple of months to really kick in. Your MD's may need to add Plaquenil (hydroxychlorquinine) to your protocol-- and start with Imuran or Arava or Cellcept as an additional immunosupressant.

It's important to add just one drug at a time, so if you have problems, they can figure out what is causing the side effect.

Don't give up, you can last this out-- and do check into FMLA-- that will protect you even if you are new to the job.

Take care,

Tracie

NS Co-owner/moderator

************************************** See what's free at http://www.aol.com.