My injury from my accident of last Monday, has raised it's ugly painful head.
I had a hard time getting to sleep last night. Took 2 Bayer asprin and that
helped some, but it's hurt all day today and I could hardly get up to use the
bathroom. It's my bad leg, so my stronger leg gets me there but it's not
easy.:eek:

Doing my PT, trying to keep from having to go back to the hospital. Please
say a little prayer for me.

Thanks..:grouphug:

Saying a prayer for you Sally as I type this. Hope tomorrow is a better day.

tomorrow is the last day of my current oral prednisone taper. I'm already feeling it. Feel like crap. It seemed like it was actually helping, but as soon as I started to taper down, the horribleness came back.

I wish I could get something to help the inflammation to go down long enough for some sort of healing to happen.

So tired of not being able to do anything fun. All I seem to do is sleep.

You can 'get' something to help with the inflammation. Its a matter of what you 'take' and don't 'take' regarding food. Diet plays a huge role in the inflammatory response, both exacerbating it and helping to calm it. Being overweight can add to that inflammation.

The beauty of it is that you have the choice to do it or not.
The way I understand it is that inflammation is a way to send nutrition to the places they are needed most, and if there is no nutrition the inflammation will continue.

When I really nourish my body- versus just eating, I can tell a big difference.
One of the problems we have in this country is that we are overfed and under nourished and the media and crap-food industry promotes it.

Luckily as adults we have a choice. There is so much info on this topic.


http://www.huffingtonpost.com/2013/0...n_2838643.html

Sally,
I'm so sorry that you are going through this. I'm praying that you slept well and feel better this morning. Please keep us posted.

missj,
Regarding diet and symptoms, I totally agree.

With love, Erika

I ate an organic whole foods diet for years but it wasn't until I went Gluten Free that my body inflamation went down. I went GF 18 months before I was finally diagnosed and it reduced my daily pain by 90%!
Turns out my son is gluten intolerant as well. Once he was GF he grew 4 inches in 2 months and still seems to be catching up. All his self control problems at school went out the window too, his teacher was amazed at the difference.

On a pharmaceutical note. My remaining pain level has pretty much been obliterated since I started Gabapentin. It's harder to tell when I'm reaching fatigue status but it's only been a week. So I've got some things to learn about my signs not being pain related.

sending hugs

SO MAD RIGHT NOW! :mad::mad::mad:

Went out to eat at a nice restaurant. While we were there, some little brat broke my walker.

I had the walker sitting next to me at the table. This lady at the table next to us got up to take her little demon spawn to the bathroom. The kid was about 6yrs old or older. He grabbed the brake cables on the walker, and was yanking them around. He bent one almost clean off, and was working on the other one.

I told him "PLEASE DO NOT DO THAT!", and he kept doing it. His mother barely apologized for her kid and dragged him off to the bathroom. What the heck? We weren't at McDonald's. My walker is NOT a toy! I **need** it to walk.

Now my brakes don't work. That walker was expensive, and I am so mad about it. The last time we had a walker that had the brakes go bad, I could never get anyone to fix it. (tried a bike shop, and the place we bought it at, and no one could fix it). I'm going to try again and see if I can find someone to fix this one for me.

I'm just really mad right now.

Erin, I would have gotten the Mom's name. Is there any survielance video in the place for evidence. I think I watch to much crime dramas on tV

My dad didn't want me to cause a scene.

I really really really really wanted to. oh em gee....did I really want to go off on the woman and her kid.

When I left, I was kind of loud about saying that I hoped the brakes on my walker would still work, and hopefully I can get them fixed. I'm almost hoping that someday the karma fairy visits that kid and something that he relies on gets broken (vandalized) in front of him by a bratty kid. He was old enough to know better. Little <bad swear word>.

Tomorrow I go to pick up the new AFO that my new physiatrist Rx-ed for my left foot. (hey, I get matching shoes again, just not the kind I wanted to wear) I'm going to ask the guy that makes the AFO's if he knows how to fix the brakes on the walker.

Erin,

If a bike shop can't fix it, a lawn mower, garden supply or small engine repair place might be able to. Rototillers and lawn mowers use the same sort of hand grip, cable-type of mechanism.

Children fiddle around with things...its in their nature to explore their environment through touch. They don't always appreciate the difference between expensive equipment and toys; especially when they are young. Developing that appreciation comes from good parenting; something that is sadly lacking all too often.
The parent should have stepped up to the plate when it came to light that their child had messed with and may have damaged your walker, but as they say...the apple doesn't fall far from the tree.

I hope that you find a repair shop that can fix it without much expense. It sounds like replacing the cable mechanism should do the trick.

With love, Erika

yesterday (wednesday) was the last day of the short taper I did. (2nd taper this month)

Today, I feel really bad. Not sure if it's because I just finished two courses of steroids, or if whatever was making me feel sick is still making me feel sick. No idea if it's an MS thing, or not.

I just want to cry. My legs feel weaker every morning. I keep feeling like something very bad is about to happen. I feel really stressed out. I've been trying to do stuff (exercises) to try to feel better, but nothing I do helps.

then yesterday when that brat broke my walker. That just really got to me. Oh, and I asked the guy who made my new AFO that I got today if he knew how to fix the walker. He said it was too broken for him to fix.

One of the cables is completely ripped out, and the other one is bent, and barely hanging on. That kid really damaged it.

I have that car that I got last summer, and I can't drive it, and I've been trying to get hand controls for the car, and it seems like no one will help me do that. I'm starting to feel like there's not really any point to keep trying to do anything. Might as well just sell the car. I never even get to ride in the front seat because whenever we go anywhere my mom gets the front seat. That car is fast becoming a sore point with me.

oh, and the new AFO hurts my leg. It's so uncomfortable that I took it off. Going to call and tell them there's something wrong with it.

just feel like everything is getting worse and worse, and no one wants to help me.

My head really hurts tonight. Think I'll go to bed. Everything hurts tonight.

Hang in there Erin. I'm having one of those weeks where I feel like it would be better to give up too. I keep wondering why I bother putting in so much effort and get so little return and my most recent attack has really set me back.

Being a mom myself I would have had no problem yelling at the kid and physically removing him from my device. And as a mom I apologize for that child's mother's lack of actual parenting. When I was walking my son to class one day I had a kid come up behind me, put his hands on each butt check and try to push me faster through the doorway and when he could finally get around me he kicked my cane and I nearly fell. I'll just say the school secretary came out of the office and supported me in my attempt to "educate" him on how to treat people with disabilities.

this past week has just been one bad day after one bad day.

I'm pretty much on my last nerve.

I've been trying to be nice to my mom, since she has problems with her temper from having had a TBI over 50yrs ago, and then having West Nile encephalitis in 2012. She has no brain-to-mouth filter, and everything she says is pretty much said in snarl form.

She's been really nasty to me and my dad lately. My dad has been pretty sick with his heart condition. Sick enough that I'm extremely worried about him. (he won't go to the doctor, except for the ones where they do blood tests)

I kind of lost it earlier today. My mom was being really nasty to both me and my dad. (she was screaming that she wanted to die) I just came downstairs and closed my not-yet-painted-no-doorknob-installed-yet bedroom door, and just kind of sat and cried. I am so stressed out the past few days. All I do is sleep, but I don't get any actual rest. I'm tired all the time. All my mom ever does is complain and yell at me. She berates my dad all the time. You can only take so much verbal abuse before you want to snap.

My back hurts. For some reason my shoulders are both starting to hurt like they did when I had frozen shoulder during the fall. I'm numb all over.

I'm missing a couple of really fun activities that my dad said I could have gone to if I'd been healthy enough. (meaning he would have paid for me to go to a Sherlock Holmes convention in Atlanta this weekend if I wasn't sick. I could have met a ton of my online friends who are also knitters/crocheters. Totally missing out on that)

I'm quickly becoming an agoraphobic hermit, that's never going to leave her parent's basement.

just hitting the brick wall of all-I-can-take-at-the-moment.

you know how they say that stress is bad for MS, and you should reduce your stress?? I'm getting a first hand look at why they say that. It's true.

Dear little Sally,

I hope you will be feeling better soon sweetie. I'm so sorry about your mishap when you were out. :hug: Sending a gentle hug to you dear one.

not 'getting tired' I AM tired
 

of trying to help/support a fellow MS'er with her problems. She is somewhat overweight, has rosacea on her face ( a clear sign of inflammation) has a terrible diet and exercise program, is plagued with constant depression and REFUSES to consider that all the crap she eats furthers her inflammation and does not help her disease process.

She thinks the DMDs are of no value and takes steroids like candy.

I have offered the thought that maybe a gluten free diet over a long period may have some benefit. She is full of excuses.

I have reached the end of my compassion rope and need to find a way to tell her to stop complaining. The power to improve her life is in her hands, she childishly refuses to do anything about it. Now I simply pity her in a pathetic way.

Thanks for letting me vent.

Erin, re: walker brake cables, my dad's walker developed a damaged cable on one side. A family friend just look the company up on the Web and ordered a new set. Maybe that would work for you. <hoping>

ANN

MissJ...time to let go, I guess. Someone told me you can lead a horse to water but you can't make him drink. You've done your part...kudos to you for trying so hard!

thank you…….feeling better about it now...

Feeling a lot weaker today. Not feeling good at all. Legs are weaker. Getting tired really fast, and I have a weird bruise on the palm side of my middle finger, right at the joint. Kind of aches.

Also, my neck hurts, right behind my jaw. And my shoulders are hurting. (that really kind of scares me, after all the pain from the frozen shoulder I had during the late fall and over winter)


on a non-health complainy note...why the heck did the painters put my trashcan in my closet??? But left my electric fan in the room to get it all dusty?

Erin,

Sorry that the body doesn't seem to be improving. Could you be anemic? That might account for the fatigue, weakness and the bruise. When was the last time you had your CBC done?

With love, Erika

Last month, when I had my b12 level checked. The doctor did the CBC and a bunch of other stuff done.

I just feel really really bad. It's like I'm getting worse on a daily basis now. I really wish I knew what was wrong. My dad has been sick with his heart problems, and he hasn't been feeling all that good either.

I don't understand it at all.

also don't understand when I call the doctor (neuro) and told him how bad I was feeling, and he said it was the steroids I just did.

feel bad enough all I want to do is cry. I feel like I'm dying. Been feeling like this since last summer. (the day I got that new car actually, is when this started) I started trying to exercise, and do anything I could to keep my energy and muscles. It just seems like every time I'd get closer to feeling better. Something would happen, and I'd feel so horrible for weeks at a time that I couldn't do anything but just sit here and read. So, of course I'm getting weaker and weaker. When I was doing the PT, I could feel myself feeling worse. Wasted all that PT. The only good thing I got out of the PT was when I was doing it for my frozen shoulder. That actually helped. Everything else, it didn't.



I don't even know if MS acts like this. If it's "normal" (yeah, no "normal" in MS, is there?)

I think you're worried about your Dad. An added stress like that,
could exascerbate the MS sx. :hug:

My aunt (the nurse) was over here tonight. Took one look at me, and wanted to know if I have lupus. Apparently I have a bright red rash on my face. She was worried until I showed her the printout of the bloodwork that I had last month. She said my bloodwork from late february is absolutely normal. Except for the b12 being low. If I didn't have MS, I'd be in great shape.

She wanted to know how my glucose was 82 (think that's what it was...) She said with all the crap I eat, I should be diabetic. She wanted to know how I had a blood sugar like that. (I have no idea what a normal blood sugar or abnormal blood sugars should be) I probably hadn't eaten yet the day that I had that blood taken. I wasn't eating well, and I'd been losing weight without trying.

My aunt even told me that from my blood test that I don't have allergies. I have no idea what thing she was looking at on the list when she said that, but she claimed that from the test results, I shouldn't have any seasonal allergies. (then why do I sneeze when I'm around ragweed?? and why do I have reactions to shellfish??)

My aunt told me before she went home that she thinks my not feeling good now is me coming down off the steroids. And she thinks I'm deconditioned (I already knew that. I keep trying to do stuff, and it's not helping)

I'm going to the doctor thursday for a follow up for all the steroids I choked down over the last month. See what he thinks. Then I need to go see the new physiatrist again. I better make the appointment for that tomorrow.

Erin, could there be some depression there also?

I really don't think I'm depressed. I'm usually in a good mood, seemingly happy most of the time. Except when I feel like crap like I do for an extended amount of time. Lately I've felt sick ALL the time. I kind of feel a bit abandoned by doctors, even tho it's not their fault. (sorry if this sounds political, I'm trying to not be... but I think it's the health care law. I had great insurance until that thing hit. Now I'm spending all my money on doctors and other stuff because the deductible is way too high. I'm going to go broke before I hit the deductible. And I'm suddenly blocked from all the good hospitals/doctors because they suddenly don't take my insurance anymore)

This past winter was really hard. I was pretty much trapped in my house by the weather. (too bleeping cold!) and I was really bored because I couldn't get out to go yarn shopping, or go do anything fun.

I am really stressed out by my mother constantly verbally abusing me and my dad (I might have mentioned that she had a TBI in the late 1950s, and then she had West Nile encephalitis a couple of years ago. Which probably fried her last nerve). Every time I thought I was feeling ok, something would happen, and I'd start to feel really sick.

My dad being sick, and him being the only person in the house that's driving at the moment is starting to worry me a bit. His driving has scared me a few times over the past few weeks. (been a few times where I thought he was going to do something similar to what my neighbor did the other day to the back of her garage)

I need to get my car set up for hand controls. Trying to get that set up seems to be harder than I thought to have happen. My old physiatrist that I lost in the insurance mayhem seemed to be dragging his feet. I don't know if it's because he was also my mom's physiatrist, and he was confusing me with her or something. Or if he was just a lazy doctor. He's the only doctor I didn't mind losing. I've only seen the new physiatrist once. I need to go back and see him. He Rx-ed me an AFO for the left leg, but I hate that thing. It hurts, and I can hardly walk at all with that thing on.

ok...can whatever deity I angered stop picking on me?

Been feeling like crap for weeks. Feeling a little worse every few days. Yesterday I turned my left knee a little bit, and hurt something. My doctor said it's patellar tendonitis. (This is something I've had problems with off and on a lot of since the 1990s. I just haven't had a problem with it for about ten years or so)

So, today. Walking is really bad. I'm trying to put towels away in my linen cabinet, and my knee hurts when I'm standing, the other leg is just getting really tired.

I'm afraid to try using my exercise bike...now that it's finally put together.

Seems like anytime I try to do anything to make stuff better. It all goes to hell. I've been trying to exercise for months. Something always happens to interrupt it.

kind of feel like if I could have had that bike put together back in january when I bought, maybe I could have been using it all this time, instead of walking past it in my living room for the past four months.

I figured out by myself why my ankles are swollen. They're not actually swollen. That's all the muscle turning into fat instead.

and I'm not depressed. I'm just frustrated and annoyed. With a lot of stuff.


EDIT

my dad just scared the crap out of me. He has a pacemaker. He has asthma. He is the most doctor phobic person I've ever seen. (he's a bleeping nurse!)

He hasn't been sleeping. At all. His driving is getting so bad, I'm terrified every time I get into a car with him. He told me tonight, that when he lays down on his right side, he can't breathe. I'm telling him he has to go to the doctor, and he tells me "I have an appointment with them, it's <some date a month away>."

I was heading downstairs on our little electronic stairlift. I started hearing what sounded like screaming. My dad had laid down, and couldn't breathe. I was looking for my cellphone in my pocket, because I'm in the middle of the stairs on the "snail-lift". I was going to call my aunt. She's a cardiac care nurse. My phone was downstairs. I finally got upstairs, and talked to him. He said the screaming noise is him trying to force air in.

This is not normal. I told him he's calling his doctor tomorrow, or I am. He's getting weaker and weaker. (I'm getting weaker and weaker too, just for different reasons) He needs to be able to sleep. I think his doctors have been kind of ignoring him anyways. The hospital that he had his pacemaker put in at is going to be closing soon. I think the doctors are more interested in their moving, than in treating their patients for some reason. At least the cardiac center is giving us that impression. That hospital used to be a level 1 trauma center, but it's in a part of town where they get a lot of uninsured people in their ER. They're losing money. It's a for-profit hospital. They're closing that hospital, and moving all the doctors to another hospital in the nicer part of town. Abandoning all the people on the poor side of town. Actually it's still a level 1 trauma center. It just won't be much longer.

I'm calling my new physiatrist tomorrow, and am going to tell them I have to get hand controls for my car now. I can't wait. I need to be able to drive. My dad's driving is scaring me to death.

I called my regular doctor back this afternoon after I got home from the appointment with him. Told him to give me the PT that he suggested, because it doesn't really matter if I only have 15 PT visits left on my insurance. My crap insurance hasn't been paying for it anyways. I have to hit the insanely high deductible first. The PT that I did for my shoulder earlier this year, along with the other PT for the MS stuff that I think I wasted (the physical therapists seemed to ignore me on what I was having problems with) cost about $2000. I just paid the bill the other day. I'm going to go broke, and my parents will end up going broke when they have to start helping me because my insurance is really not affordable for me. And I can't change it to something cheaper that will cover me better, because there really isn't anything comparable to what I used to have.

Erin - So sorry to hear about your dad. He needs to be seen as soon as possible. Yikes!

Also, are you on Medicare or do you have a private insurance company?

As for Lupus, there are a bunch of tests for it. Believe me, I've had them all and apparently do have Lupus in addition to MS. From what I understand, you can have a negative ANA test and still have Lupus. I've only had one positive ANA and one positive anti-DS but not at the same time. It's one of those tricky diseases. Apparently, I also have Sjogren's too, another AI disease. I do not get a rash across my face and not all people with Lupus get that rash. According to the rheumatologist I saw, the Lupus I have is only affecting my joints. I was going to get a 2nd opinion but ended up having emergency surgery instead.:rolleyes: So, discuss the rash with your PCP and go from there. Further testing may need to be done and Lupus may be the reason that you have been feeling poorly, in addition to all the other things you have going on with your life.

Given your parent's health status, finding ways to be independent is so important for you. If you can't get the hand controls right now, see if there is some sort of transportation for people with disabilities in your area so that you can get to places on your own without having to depend on your dad. He is not in good health from what you have stated and you shouldn't depend on him. Additionally, find ways to help your parents out as they need that right now. While you are their daughter and they love you, they need someone to take care of them right now and not them taking care of someone else.

I talked to my aunt (dad's sister-in-law, she's the nurse) today about it. My uncle had similar things going on when he was sick. Trying to get her to help. Just without him knowing that I talked to her.

I talked to my regular doctor yesterday. He said he thought the redness in my face is probably rosacea (sp?). I've had a lot of blood tests over the years. I've never had one test positive for lupus.

At least today, my b12 is up finally.

I have private insurance. The rate I'm spending money going to doctors and PT, I might not have it for long tho. I'll run out of money at some point. My insurance premium might have dropped a small amount, but the deductible is so high that all my money is going towards the doctor's bills that the insurance isn't paying because I haven't hit the deductible...and I probably won't hit the deductible. My dad told me that it usually took me awhile to hit the deductible every year. This year, I'm pretty sure that if I had my old policy. I'd be very close to the deductible. Or at least a little more than halfway.

I'm reading this, Erin, and feeling so sorry for the struggle in your home, by everyone living there.
Please keep pestering whoever needs to do something to get the hand controls. Sometimes you have to pester to get attention. We are trained to be patient and think of others, which is VERY GOOD, but there are times you have to just fight for your needs.
That's what happened to me after the Cerro Grande fire here in 2000. I was the only one who could fight FEMA for the insurance benefits they promised when they took over our home insurance because the fire was started by a gov't employee doing a "prescribed burn." My husband was no longer able to fight, at that point, sort of like your dad, just ran out of ability to cope with all the myriad stresses. You have to be a fighter now, even if you are ill. Not fair!

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.:hug:

Ok, a bit of limburger here. :p

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. :eek:

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

:hug:

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 :winky:.

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 :hug::hug::hug:.

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.