Brian
 

your so welcome,convice nooo you don't have to convice anyone.
Roxie likes your long tail,and Dahlek is having a hotflash,my gosh
your one lucky dog,so to speak. :D :D Hey to the rest of you. got
any good well tails :D :D Sue

Good luck on your next treatment. I'm glad your going to be careful. As for not telling or telling coworkers. Now I'm not saying this will be your issue but hjust so your prepared. What I have found with my eating disorder and taking time its better to just be honest. Some how people find out and really when you just explain like your under care and are healthy enough to preform your job the talk will stop. You will get your "caretakers" that are annoying but better then gossip. I will say you will see who your true friends are and to me "gossipers" are not. As for disability I don't get it so Melody what are you suppose to do for the 2 years while waiting? By then you may be able to work. I have no clue about insurance stuff. Just that mine sucks but at least I have it. Hugs

Roxie
 

Hi - you've gotten some good advice here... did you talk to your principal yet? As mentioned - your co-workers dont need to know - BUT - you need to get this officially presented to HR - that you do need accomodations (they will ask for MD notes for sure).... not only does this let them know that you truly have health issues - but "protects" you, as mentioned, from a potential termination due to your health (once presented must be taken into consideration and you have handed the liability to the employer who will be much more hesitant to take any adverse action against you).

Reasonable accomodations unforutnately are often left to interpretation of the employer and a point of dissention - but with the large employee base like it sounds you are working with - reassignment to a part time position sounds like it would be feasible for them if necessary. At least presenting this officilly will ensure you can protect yourself! If you do at some point need to go on disablity - does your employer have a plan too? This is usually quicker to get - but if you are terminated before you can file a claim then its useless....

SSDI of course is another animal - you would probabably be required to get both.

Wish you the best here - unfortunatey coming from a backgorund in HR - I saw employees ending up being terminated because they did not come to us with their issues - and many companies are unethical enough to cut their losses even though they may know you are sick - because it hasnt been presented to them formally...... however, once they are notified of your medical issues - they must tread very carefully.

Hang in there:)

Roxie:

Here's exactly what you should do (because I had to do it myself).

When my son was diagnsed with Aspergers, I simply looked it up on the internet, printed out a few flyers with the explanation on it, and when family members would say "What the heck is Aspergers Disorder?" I would hand them the piece of paper. They would read it and they would go "Oh, that's what it is".

Now I read in your signature that you have Chronic Anoxonal Neuropathy and Myopathy. I tried googling this to get a simple explanation and what came up was only stuff a doctor could interpret.

So if anyone on these boards can write you up a simple layman's explanation of Chronic Anoxal Neuropathy, then you can run it off on your computer (make a few copies). Keep these copies in your purse.

When you feel the need to share what you have with whomever you need to share this with, simply whip it out of your purse and simply state "this is what I have, I hope you can be understanding of what I'm going though".

Hopefully it will stop them dead in their tracks.

Hope this suggestion helps you.

Sincerely,

Melody

The Mayo Clinic overview article on neuropathy--
 

--might be enough for explanatory purposes:

http://www.mayoclinic.com/health/per...opathy/DS00131

There's a lot of good info on the Mayo Clinic site. However, their B12 information is crap. I've been after the people who are supposed to respond to comments, and it has improved somewhat, but it still is unreliable.

It is shameful that an institution of that prestige and importance would allow misinformation so basic as the definition of "pernicious anemia" to be wrong and outdated by decades.

Do not use them as a resource for B12 information.

rose

Here ya go!!!!
 

Roxie: I just simplified the whole thing. While it is not the whole explanation, with causes, effects, meds, whatever, it will get the message across.

Whomever you wish to show this information to, well, just in case they are a supervisor, or a boss, or a non-medical professional, this explanation gives them the facts they need to understand better the condition known as Peripheral Neuropathy. So copy and past the following, either put the info on index cards and carry around with you, or simply copy and paste into your word processing software, print out some copies, have them ready and whenever you need to make someone really understand what it is that you have, well here it is!!!!

-------------------------------------------------------------------------

Peripheral neuropathy is a term used to describe disorders of your peripheral nervous system. Your peripheral nervous system includes nerves in your face, arms, legs, torso, and some nerves in your skull. In fact, all of your nerves not located in your central nervous system — which includes the brain and the spinal cord — are peripheral nerves.

When damaged, your nerves can't communicate properly, and that miscommunication causes symptoms such as pain or numbness.

Peripheral neuropathy often affects people with diabetes and autoimmune diseases such as rheumatoid arthritis and lupus.

If a sensory nerve is damaged, you're likely to experience symptoms that may include:
Pain
Numbness
Tingling
Muscle weakness
Burning
Loss of feeling

At times your symptoms may be barely noticeable, and some people go years without realizing anything is wrong. For others, symptoms are constant, and especially at night may be almost unbearable. Signs and symptoms may include:
The sensation that you're wearing an invisible glove or sock
Burning pain
Sharp, jabbing or electric-like pain
Extreme sensitivity to touch, even light touch
Lack of coordination

--------------------------------------------------------------------

Thank you all for the info for PN. I'll print it off and use it at work.
I had my 4th infusion on Wed. and still feeling like death warmed over from it.....nausea, flu like symptoms....the works. Do you think this is going to happen after each infusion?? This time it was the worst so far. I'm going to mention it to my dr. when I see him.....maybe the dose is too strong??

I do believe that your post IVIG symptoms are fairly common side effects.
They usually diminish somewhat, over time.

Yeah, Roxie.
Don't worry. Alan felt like he was hit by a mack truck the first time he had them.
He has had over 10 and now (at least for him), he just sleeps through the whole thing and has no side effects whatsoever.

So don't feel down about this. Your body is probably getting used to all those thousands of anti-bodies doing their stuff in your body. I call them "little warriors". Alan laughs. I say to him "just imagine, little warriors going into your body, attacking all the bad guys. Like little ninjas".

He laughs.

Feel better soon.

Melody