Well, I am giving in. My neuro wants me to have the steroid treatment. I am always so reluctant to call her. I never like to complain but I have been out of work for a week (feeling like crap for a month) and there has been no improvement yet. I guess I need to do this.

I just don't like to be out of work for so long. I am the only one who does my job so everything just sits at my desk, waiting for me to come back. With the steroids I will be out for at least 3 weeks (I do the 9 day IV).

I am feeling a little depressed I guess. I was feeling so good for so long and now this d*** disease is biting me again! Ugh!! Why??? Sorry for the pity party, I guess I just needed to vent. There are others that are dealing with a whole lot more than I am.

Thanks for listening!

Vent away, Girlie, when you're the one living it, it's bad enough. No matter what happens to us, there is always someone who has it worse— that doesn't make your experience any easier or less of an impact.

Please don't think of getting the meds you need as "giving in", think of it as taking action!

Can you work out of the office? It's no fun to haul a full briefcase around, but if you can at least stay a little caught-up, the return will be easier.

It's hard, but you'll make it!

I would love to work at home. I have mentioned it before, the last time I had the IV. But the problem is I am in the union, so I don't think they would let me that easily. My boss would love to have me work at home but the union is hard to deal with. If they let me then they would have to let others.

Thanks for reminding me that I am taking action! I need to put that up somewhere so I don't feel like this again. It is a good saying and a good way to think of the steroids. I always feel like I am weak because I have to have them. But in reality I am strong because I am fighting this thing! Thanks AMN!!!!!!

I know what you mean. I just finished a treatment. The one good thing was I discovered my insurance pays 100% for a home health nurse. So I was able to stay at home and they would come by each day and give me my treatment. That made it a better experience.

I hope your employer is understanding. Maybe you could go by your work (even after hours so you wouldn't get 'sucked in') and pick up some work or take some home?

The steriods are so hard on the body. You may want to talk w/ your doctor about getting extra fluids with the roids. For some reason I think that helps my body.

Hope this treatment goes smoothly for you and you see tremendous results!

((HUGS))

Thanks Baxter!!!! Yes, my insurance pays for the home nurse too. She will come the first day, after I get my midline placed, and will show me what to do. Then I will be on my own to do it myself. She will come the last day to take out the midline, and she will be available to come whenever I need her.

I am going to talk to the boss and see what they can do. Even if it is just a little work from the house.

How are you feeling after your round?

Girlie, I can totally relate to what you are going through. I just went through the same emotional crap. You feel so good for so long, think all is going well and life will get back to normal then BAM! you're hit with an exacerbation and your down for a bit.

I am glad that you will be starting the steroids and hope it goes well. If you can find away to work a bit from home that would be great. It certainly would help with the work related stress levels as you can stay somewhat caught up and won't get slammed when you get back to the office.

Let us know how you are doing.

I will, thank you for caring!

i am with tk on that total blind side, sometimes. I hope the roids help you girlie girl, its just a shame all these diff meds hit us all diff, so like i said I hope they work for you and get you back to feeling better real soon, hang in there

O.K., here's my suggestion...

When I need steriods now, I ALWAYS take them as a "solumedrol-smoothie".

It's something that was first offered to me by the MS center at UCSF.

It worked so well, that when I needed more steroids, I convinced my neuro to do some research on it. Sure enough, the next day I got the call saying he had contacted the compounding pharmacy and I would be able to pick up my solumedrol.

It's the same medication that is in your IV, but it's in a powdered form (hasn't been reconstituted).

I open the glass vile, pour it into orange juice, add sugar AND splenda to it....and gag it down!

It's the most VILE tasting stuff you've ever had...BUT it's worth it 'cause you don't have to miss work. You don't have to sit at a hospital while the IV drips in your arm. It takes all of about 10 minutes and you're done.

As bad as it tastes, I would NEVER do the IV again unless I just couldn't get the solumedrol any other way.

The only down side is that the only compounding pharmacy in town doesn't take my insurance, so I have to pay cash and submit to the insurance after.

But three days of solumedrol still only costs $100. And my insurance reimburses me within a week...it's just an inconvenience.

P.S. If you do it, just make sure you get a prescription for 1 gram. The first time I did it, the prescription was written for only 500mg x three days, and two weeks later I was still suffering with the exacerbation.

The neuro wrote another prescription for 1 gram x three days and by the second day I was good to go :-)

Good Luck Tomorrow - I will be thinking of you....