I would love to try it but imagine it would pose quite a problem since my employer randomly drug tests lol

Kelli,
Here in Ohio all positive drug screens should be reviewed by MRO Medical Review Officer and if the medication is prescribed by by your doctor then it should be protected information and never released to your employer.

With my employer we are supposed to report ANY medication, down to an allergy pill. I think it violates my rights personally. Once, after an infusion, during a random dog drug search, the dog smelled something on my car. They dumped my entire purse out on the hood of my car. I was so humiliated. I had a pill holder with vitamins, nausea meds, Norco, and more, plus nasal spray, eczema cream...omg I was so humiliated. Then because of the Norco, I was forced to have a monthly review with someone from my work about my use and I had to do this for a year! Shouldn't they know that patients who are on long term maintenance don't get high from their freaking medications?? EVER? I work for the VP and this was done out in the open, I was so worried about tarnishing his reputation and mine...people don't know I am sick you know???

Errrrrrrr soapbox...omg I"m sorry haha apparently I am still harboring ill will about this BWAHAHAHA

OMG Kelli!!!!! That is absolutlely horrific! I am not sure about rights violations only because to a certain extent, companies are allowed to have corporate policies. But I think that if the policies themselves are discriminatory or unconstitutional, that yes, your rights were severely violated. Have you thought about contacting an attorney?

its one of the largest oil companies in the world...i have made enough trouble just being sick...if it were to happen again today, I would have no problem filing a complaint about HOW it was handled, not that they searched me, just dumping my purse out on the hood of my car and inspecting my medication for God and everyone to see and to gossip about.

That's sounds like a huge invasion of rights... In Canada certain jobs do drug testing like anything for the government or if you are an engineer, etc... But not for many jobs.

I find our economic systems do not tend to support people who are sick or suffer from a chronic illness in general. I've been fired from jobs due to being sick for more than one day O_o it's not legal but I viewed that firing as a blessing. I ended up going backpacking around Europe for 4 months instead of finding another job, so I can't really complain =P

But yes, I found those cesamet pills works wonders! They did make me a little 'high' but there are various strengths, so you can lower the dosage. I was getting some headaches over the weekend and my boyfriend, the little devil, brought over a tiny baggy of green and his vapourizer... That stuff put the cesamet to shame. No back pain, headache, nausea ^_^ and i actually didn't feel like shit for the first time in months! In fact, I felt quite awesome and happy.

If there has been anything I have learned from having an overly critical family, is to not give a flying f*** about what other people think. It is your life and your happiness. If you are sick and something makes you feel better--and it's not harmful to yourself or others-- then do it! Life is too short to be living in misery and if something makes a tough situation a little better, then all the more to you.

It's easy to judge someone when you haven't walked in their shoes, and I think if more people did then things like medicinal marijuana would be more accessible to those who can benefit from it.

Oh Kelli that's horrible!! I don't know much about worker's rights, but it's a complete invasion of privacy!!
Part of me likes the idea of medical marijuana, but my parents HATE it....I've got another year till I can legally make my own decisions...we'll see.

When I first started my monthly IVIGs, I had a horrible time with nausea, uncontrollable chills, shaking and body aches. They now give me IV Benadryl and Zophran for nausea. It has helped significanlty. Now I just sleep through the whole thing and they wake me when it is over. I am restless for the first 30 minutes or so because of the high dose of Benadryl but it settles down and completely relaxes me. I would definately recommend it to anyone who has a lot of side effects. You can also request a different brand of IVIG if your insurance will cover it. The first brand I was on was awful. I would go for my treatment and be in the room with all of the chemo patients who took their treatments like a champ and I shook so badly with chills that I just covered my head with a blanket and cried. I had no control over it at all. The nurse would put four or five blankets on me to try to stop it. A year and a half into treatments, they changed my brand. It has been a tremendous difference. I sure hope your treatments get easier to tolerate.

OMG NFavors they should have stopped your flippen infusion! Rigors (better known as uncontroallable chills and shaking) is a side effect of IVIG - from what I understand - when they go too fast! I had it SEVERAL times. We would stop my infusion, of course give me 50 mg MORE of benadryl (100 total) and wait. Then we would start at a slower speed and it fixed the issue. It happened every time they tried to go too fast and I could feel them coming on. HORRIBLE. The horrid side effects can also be minimized by slowing down the infusion (#1) and hydrating. I would say at least 80% of people pre-medicate already. I"m sorry you had such a horrible experience :(

Im all for medical marijuana and if I didnt work I would smoke it, ok maybe not smoke it since i have a lung disease. BUT I did a LOT of drugs as a kid and was a drug addict for a couple of years and it had NOTHING to do with smoking pot, it was the crappy life I had, honestly. Thank God I went through it as a kid. Now I am completely anti-drug. I do not look down on people who smoke pot though as I know from experience, you will not go out and rob a bank for more pot, maybe steal some donuts bwahaha

Kelli, it was an awful experience. They actually were giving me the infusion as slow as they could but it didn't stop the chills and shaking. It was the type of product I was on. Once they changed me to Privigen, everything was so much better. They actually just upped my dosage this week. After 2 and 1/2 years of therapy, my levels are still too low. My IgA and IgM barely register. I suppose that is an improvement since they didn't even show up before. My IgG is also still below normal. Everyday is a struggle as I am sure all of you can relate to. Some days are worse than others. In the words of the Genie from Disney's Aladdin, "You'd be surprised what you can live through." :)

> "You'd be surprised what you can live through."

I love it! Words to live by.

I love Disney...Words to live by. :)

NFavors you said "After 2 and 1/2 years of therapy, my levels are still too low. My IgA and IgM barely register. I suppose that is an improvement since they didn't even show up before. My IgG is also still below normal." Your IgA and IgM shouldn't change as IVIG ONLY replaces IgG. Also, if you are still experiencing a lot of infections then you could ask for an increase in dosage or switch to subq? My levels nearly doubled when I went from IVIG to subq. Hang in there.

i have been on ivig since 07 and my levels are finally stable with every 3 wks infusions and 55 g
even my subclass levels are holding something that has never happened.....
so levels can be brought up with the correct ivig dose
i had reactions at times but felt the benefits outweighed the reactions so i lived with them....now i rarely have any reactions if i do i just slow down for a few and it goes away. i do medicate with phenergan and i hydrate.....i used to leave school at 2 so i had to go pretty fast to get done before they closed i didnt have the luxergy of going slow i was grateful i could get someone to watch my classroom for an hr and not have to take a day off since i was always out of sick days...my principal was great...as a teacher there isnt an option of taking an hr here or hr there it had to be 1/2 day or whole day since they had to get someone to cover the class and subs dont work by the hr.
i guess we learn to live with what we have to to get by....now that i am retired i have kind of an open schedule so timing isnt an issue....

let me clarify igG levels.... others are not replaceable.....the subclsses i refer to are my igG subclasses...