[legzzalot]

So the broken back leaving me immobile has lit a new fire to spend more time at the gym. I go to phys therapy 2 days a week and now at least 2 nights a week I go to the gym. PT is mostly core and back stabilization and the gym I use to try to build and maintain muscles in my legs and arms.

Which is sometimes hard to do due to the whole fatigue thing. But I find myself easily motivated to hit the gym because every time I think about how I am tired and don't wanna go the PPSM statistics pop into my head. I try to be optimistic with this disease but it doesn't change the fact that I am going to do everything within my power to stay as mobile as possible.

So my arms have gained half an inch and my thighs have gotten smaller while my calves are growing. On the plus side I have lost 8 pounds.

Just wish I had the balance to get on the treadmill. This is my new goal.

[Judy2]

YOU GO GIRL!!!!! Yay leggzzs!! Keep on moving as long as you can. It's really the pitts not to be able to move the legs no matter how hard you try and tell them to. And it's much better turning into the HULK with muscles than just plain fat from sitting all the time! I HATE THIS DISEASE!!! Oh for the days when I ran three miles a day.....sigh.

5, 4, 3, 2, 1........

[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...

[Gertrude]

I wonder if others with this condition have as hard a time to move their bodies out the bed or chair as I do. I feel like I am wrapped up in a space suit made out of heavy lead and I can't move very well...my right leg is always stiff and I get that 'drop foot' when I try to walk like I used to. I have had no one to talk to and I am not a fan of the computer. I hope to get a real PT soon. I've gone through countless chiropractors and massage therapists. I finally found one doctor who begged me to see a neurologists (for the second time) and I got diagnosed. My body is always tight and stiff all over. I'm worried I won't make it to retirement...I'm 55.

[Aarcyn]

Originally Posted by Gertrude

I wonder if others with this condition have as hard a time to move their bodies out the bed or chair as I do. I feel like I am wrapped up in a space suit made out of heavy lead and I can't move very well...my right leg is always stiff and I get that 'drop foot' when I try to walk like I used to. I have had no one to talk to and I am not a fan of the computer. I hope to get a real PT soon. I've gone through countless chiropractors and massage therapists. I finally found one doctor who begged me to see a neurologists (for the second time) and I got diagnosed. My body is always tight and stiff all over. I'm worried I won't make it to retirement...I'm 55.

The answer is yes, I have symptoms similar to you. Because it is progressive, I know it will not be better but I just hope it stays the same. My progression has been relatively slow but if I think back to 2005 when I finally had to go to the doctor and find out why my body was acting that way, I was so much better then than I am now.

I did PT and have massages upon occasion.

Getting in/out of bed, chairs is more and more difficult. It is depressing. I have plenty of "discussions" with my psychiatrist about my supposed acute depression. I think he is wrong about my dark perspective, I believe I have a perfect right to be sad/mad.

Over the past years though, I just struggle to get up and just keep doing what I do. I use a rollator (PT had recommended it). I do whatever it takes.

Am I happy? Yes and no. I just deal with it, like you do even if our future is not nearly what I had thought it would be. I envy my neighbor, a 76 year old woman who walks every morning and does her church stuff, etc.

I keep most of my dark thoughts to myself. Saying it aloud to most people puts an awkward spin on any relationship.

In this forum, I have found a few people that I talk to that really understand so I can vent here.

I hope that helps...a little. I am toying with the thought of getting a working dog. The mutual help/responsibility may improve my life.

My only problem is that I want to just be given the dog and not do the research needed to get the help!

[kicker]

We have 2 dogs, neither a working dog, just mutts from the pound but both would do what they could in a situation. I do love them both, I'm never alone. I always carry my cell phone to call the EMTs when I've fallen and can't get up. I can be sort of dignified with them in my underwear when needed. If I couldn't laugh, I'd always be crying. MS sucks no matter what kind.