[Aarcyn]

Having MS means I have to make difficult decisions. I have to be willing to know my body and what I cannot do.

This is supposed to be my busy time. Kinda like xmas for the vast majority here. I make breads, tons of them during this time. So much that I bought an extra freezer and had an electrician safely wire it in my garage.

The whole process is complicated and I have taken great pride in pulling off what seems to be an impossible feat.

There has always been a great satisfaction in this crazy time.

But I just sent out an e-mail telling "my people" that I cannot fill their orders. I have never met some of these people so it may even be the first time they learn of my MS.

I know I have to pay attention to my body and try not to give in to a pity party but writing the e-mail and pressing the "send" button is just a little more of me that disappeared today.

[SallyC]

Awwww Cyn....darn it...

[legzzalot]

So i still have 4 broken bones in my back. Solution? Morphine pills. 3x a day. Still have Bursitis in my hip and a torn hip flexor so i started PT, which is a waste of time. 20 minutes of strecthing, 15 minute massage, and 15 minute ultrasound massage. Feels good (aside formt he 20 minutes of torture) but my hip still hurts. Let's see, what else?

Oh yeah, Zombie thyroid has come back to life 6 yrs after we killed it and it is over active again (probably a good thing since morphone causes munchies). Solution: We are going to monitor it.

I have this stupid MS thing; solution: NONE. But we are still doing Ty infusions once a month. Now for the fun part.... the Spine doc wants to do monthly epidural stertoids into my spine. BUT, neuro says we have to have a 2 week window from the ty infusion.... so 2 weeks before infusion we can do injection, then 2 weeks after infusion we can do injection.... only problem of course is that there are only 4 weeks in a month. which leaves a 2-3 day window I can get infusion. And we have to schedule all of this around 3 days a week PT, 1 day a week physchological councelling, monthly follow up with PCP. monthly follow up with ortho, let's not forget weekends and holidays, plus foolow ups with all of my other "specialists".

There are not enough days in a week!

[kicker]

My neurologist has actually gotten nicer as he realizes there's not a dang thing he can do for me and my PPMS. We no longer play the get a MRI game, both asking "why." Last time I saw him he said see you in a year unless you need me. We no longer do the every 6 months game. He never takes longer than 12 hours to answer my e-mails, is open to providing me with WC prescription, pain medications, letters for house delivery of mail (My mailbox is 800 feet away down a hilly drive.) He does not say it, but we both know there is nothing he can do but treat problems if they arise. Rebif, Novantrone, generic/compounded fampridine have been tried with no success. Last time I saw him I said it must get hard treating MS people (he is a MS Specialist Neurologist), no one gets better". He cough/laughed and didn't say anything. No PT for me, My job is to use my time well NOW.

[SallyC]

Hi Leggs, good to hear from you.

I am so sorry for all your troubles....I hope you get all your ducks in a row, soon, without too much QuAcKiNg...

[SallyC]

It's nice that you have a good rapport with your DOC. Too bad he doesn't have all the answers.

Keep it moving, Dear..

[Noidy]

PRMS... and can't find anyone else with it. Is it ok if I join this thread???

[SallyC]

Originally Posted by Noidy

PRMS... and can't find anyone else with it. Is it ok if I join this thread???

Yep, you fit right in with us oddballs..

[Noidy]

Thanks Sally. It feels great to be welcomed. You all are so wonderful here.

[legzzalot]

hi noidy! welcome to crazy town...population....us!