my dad finally got some sleep last night. He looks like he feels better, and he said he feels better. Part of his problem is that he's got a lot of edema, that he has to get off of him every day. So he takes medication to make him pee to get rid of all that fluid. (sorry, TMI). While all the work has been done in our house, he was having problems getting to the bathroom in his bedroom. It's easier for him to get to the bathroom that's been getting remodeled. So, I think he was stupid, and didn't take his medication when he was supposed to be taking it. He's taken it very early in the morning the past couple of days. So, hopefully he's getting rid of it quicker. I didn't hear him coughing as much last night too. So, I think he's getting that fluid out better now.

He also has asthma, and while we were having the tile work done in the bathroom, he was coughing more. I think that's because the kid who was cutting the tile was leaving the front door open while he was cutting, and generally being a slob. (the other tile guys told me that kid couldn't cut to save his life. He wasted a ton of our tile because he couldn't cut a straight line. He kept complaining about his life, and that he was thinking of quitting. I almost told him to leave a couple of times. He quit halfway thru our tile job. Thankfully!)

I'm just glad my dad says he feels better today because he got some sleep. He's upstairs taking a nap right now, as long as my mom leaves him alone.

He looked better to me this morning. I think he needs more sleep, so I left him alone and came back downstairs to watch a movie. If I can manage to get my other computer chair into my room without falling down or getting stuck in the bedroom door because the chair is too big.

Glad to hear that your DDad is feeling better.

Ok, a bit of limburger here.

We had a five day vacation to Negril Jamaica and it was wonderful except that I got a sun rash and horrible bites from either mosquitoes or sand fleas. I am still itchy and rashy.

If we go again we have to find a resort that both fogs for mosquitoes and that has beach huts in plentiful supply so I don't suffer.

From what I understand, the sand fleas are actually microscopic shellfish and I'm allergic so that's likely why the bites swell and itch so bad.

Sheesh Wiz, I wonder if your Health Ins. covers Vacation Rehab??

still not feeling good.

Legs are really weak. It feels like it gets worse every few days.

I'm wondering why this is happening. Is it the MS, is it something worse than then MS? My legs feeling weaker and weaker all the time is really disturbing to me. Scary.

I don't want to do steroids again, but I might have to. (when I was taking oral steroids earlier this month, things felt a little better in my legs. Oral steroids were kind of making me sick tho)

edit

just talked to the neuro. He said "no steroids" because he said he thought it would make me worse. (see, these are things I like explained to me. finally someone gives me an explanation). He said that I'd have to do some intense PT, possibly "in-house" PT. (not sure I like the sound of "in-house". Sounds expensive, and I don't want to have to go to a hospital)

Erin,

Sometimes we have to bite the bullet and put everything else aside, so that we can just concentrate on therapy and getting well.
Speaking from first hand experience and recalling what it took to recover after a severe, multi-symptom relapse that started in 2000 and lasted well into 2002, at times, it may seem to be the hardest thing that you will ever do. Speaking again from experience, it is well worth giving it everything you have when it comes to intense physiotherapy programs.

That means preparing things so that you will not be distracted by them once you are engaging the program (you probably won't have the energy to do so). Take care of as much as you can before hand, and prepare as you would, before going away on an extended vacation.

For me (I found out the hard way), it meant a restricted social life, few entertainments and arranging for a whole lot of support from family and friends. I needed all of that and some other forms of therapy as well, including psychotherapy, to get through it; because at times, I was certain that I could not do another day...at least not without trying to attack the PT .

Your doctor may not have said so, but intense PT programs are recommended as a "last ditch effort" to regain what has been lost...because the window of opportunity to accomplish that is closing.

When it was recommended for me, I was told that if I didn't get my leg and hip strength back and relearn how to walk right then, that I would never be able to do it. Hearing that scared the heck out of me and as I lay in bed, unable to move my legs much because of transverse myelitis, I cried a river of tears. Then I cursed at my legs and signed onto the program, not knowing that river would lead to the seeming ocean of tears that I cried during the program.

While I went through the program, I think that I experienced every negative emotion that humans are capable of; including resentment, hatred, loathing and a lot of it was directed toward myself and my body. At times, it seemed that there was no end to the frustration, torture and pain and many times I simply gave up. My PT would leave me to cry myself out then, only to return a short time later to begin again. I hated him...but I also loved him.
I did get through it but it took me 6 months of daily PT, first in hospital, then at a PT clinic and on my own at home, before I could walk without too much of a limp.

A few years later, I ran into my PT at a therapist's conference and we had a good chat. It was...I still get choked up about this...great to give him a big hug, to truly thank him and to tell him that I understood why he left me to cry myself out during those times when I had given up.

You see, by then I had been given the opportunity to be in his shoes with one of my own patients who was recovering from a devastating car accident. She had given up in a fit of rage and had collapsed in tears when I had pushed her to keep on trying. It broke my heart and I had to leave her, for I too was crying and I felt that she would truly give up if she saw me in that state as well...and so we both cried ourselves out in private.

I tell you this because if you do decide to dedicate yourself to an intense PT program, only to find yourself in such a state, please know that you may not be the only one who may be experiencing what you are at that point. In sharing this experience with family and friends as well as my PT, I learned that many of them had suffered right along with me, and that they had hidden it; all so that I wouldn't give up. Thinking back, had I known that then, I think that I would have fought harder to keep on trying than I did sometimes.

I really hope that you will go ahead with the program and I pray that you will find the strength to dedicate yourself fully to it. Your family needs you to be as well as you can be and I know that there are a whole lot of people here rooting for you to attain your goals as well.

If you go ahead with it, please come here as often as you can for support and so that we can celebrate your victories with you; no matter how small or insignificant they may seem to others. There are many here who I'm sure have been through some pretty tough PT programs and the rough experiences that this stupid disease doles out, so we can understand how you might be feeling.
I for one will fully support you in any way that I can, even though I may secretly cry right along with you .

You can do this!
Please go for it.

With much love, Erika

Erika
wow just wow.
thank you for baring your soul on this.
Talk about amazing and true support. This is it.
I can only imagine what an amazing therapist you are, especially given that you know what you know.

I know that your response has been directed to Erin, but know that your words resonate with me and I feel a deep sense of support for me and my path, just reading your words.

I back you 1000% in this.

I don't think I can financially afford it. My lovely crap insurance might not pay for it. Plus, there's that insanely high deductible that I have to hit first. It's so high, I'll be out of money before I even get halfway to the deductible.

If I can't pay for it, I can't go.

really missing my old insurance.

Thanks missj.

Erin,
A great deal of the work involved with most physical therapy programs can be done on your own. Any PT worth their salt can modify exercises so that you can do them at home without investing in expensive equipment. They will also instruct you as to how many repetitions to do, how frequently (don't faint when you hear that bit), and then advance your program as you progress.

If you set your heart to doing it, you can do most of it at home and may only need to go in to see the PT every week or two. As well, if you demonstrate genuine interest & dedication to their instruction, a good therapist will probably advise you over the phone/via email if you run into problems...especially if they understand that there is a financial obstacle. Even if they charge you a fee for that, it is usually less than "in-clinic" consultation fees.

It is probably worth your while to at least have an initial consult with the PT that is running the program to see what would be involved, how they might be able to accommodate you and your insurance situation and answer some other questions that you might be having.

With love, Erika

The thing is, I've been doing this stuff at home, by myself for months. I've been feeling like I'm getting worse and worse, and nothing I do is stopping it. I am starting to think it's doing something very horrible to me now. I'm hoping that doing the out patient PT right now will help me get back to where I might be able to continue this at home. It's just that it's gotten worse and worse, and it won't stop, and won't leave me alone.

I've pretty much lost all my Real Life friends. I'm not even sure if I still have a boyfriend. I can barely take care of myself. I have no idea why things keep getting worse almost daily. I just want it to back the heck off.