My whine today is that I'm still having vivid dreams, which have become
more like nightmares and are literally driving me nuts.:Crazy 2:. I wake up worn
out from dealing with them and trying to solve them in my sleep. They
are always unsolveable. EEK!!!:mad:

Have you had any medicine changes

I know that some of the meds that I have been prescribed through the years have made me dream a lot - and not good dreams. Have you had any changes to your prescriptions?

I know that it probably is the LDN, but I don't want to stop taking it,
because it is helping to keep my MS from progressing too fast. The
dreams just seem to be getting worse. Oh well, live with it, she tells
herself.:rolleyes:

Thanks.:grouphug:

Yikes, Sally! I hope the dreams settle down.:hug::hug: I go through periods of vivid dreams. They're not necessarily scary dreams or anything, just vivid in both colors and circumstances.

I wish I could write a book on my dreams they are so vivid, like Trik said, in circumstances. They are wild. Sometimes a little racy!!!!

I prayed and asked for pleasant dreams or make me laugh at the horrible dreams.
That seemed to work, for now. I'm still having the awful, stress related, crazy
dreams, but this morning, I woke up laughing at it.:D:p:D. Now I can smile
/smurk whenever it comes to mind.:):rolleyes:

Sally - Changing your thought patterns really does help with better sleep and moods in general. Most nights, I can't say every because sometimes I'm too tired, I write in my prayer journal all the things I am thankful for - family, friends, a certain event, etc. I also found that watching lighthearted or comedy shows within an hour of going to bed helps. The Walking Dead would certainly give me vivid scary dreams.:eek::D I try to keep things light and happy and it seems to make a difference for me.

Might not be getting the new minivan. My dad and I decided that we're going to get the hand controls installed into my RAV4, and we're selling his minivan. Still putting a ramp into our garage.

We kind of decided that it'll make more financial sense to spend $1000+ to put hand controls into my car, rather than sink close to $50k into a new car right now.

Might ask my dad for a new car stereo for my RAV (I wanted the bluetooth capability that one of the minivans I was looking at had)

So, kinda bummed about no new car, but kind of excited that I'll probably be able to drive my own current car again soon. (knock on wood)

Now I just have to wait for my neuro to call me back today. I'm starting to get the frozen shoulder symptoms back. The treatment for frozen shoulder involves steroid injections directly into the shoulder joint. Problem is, my neuro told me not to take anymore steroids. I don't know what to do if the shoulder doctor wants to inject more steroids into my shoulder.

My aunt told me that it's a different type of steroid. It's into the joint spaces, rather than oral or intravenous. So, maybe it'll be ok. Hopefully.

and while I was writing this post, the driver's assessment place called me back, and I have an appointment next monday for the assessment. (yay! about freaking time!!).

Still disappointed about no new car. (that would have been my birthday present for the next twenty years). I think I might ask my dad for a new iPad Mini instead now.

I still have frozen shoulder apparently. It's starting to hurt more every day.

Treatment for frozen shoulder is steroid shots directly into the shoulder joint...Neuro told me awhile back that steroids will probably make the MS worse. Called the neuro yesterday to tell him that my shoulder is starting to cause me more problems again. Asked him what to do if the shoulder doctor wants to give me another shot of cortisone in the shoulder.

Neuro was not very supportive of the idea of steroid injections. I'm not really supportive of the idea that I might be in pain all summer...plus if my shoulder hurts as bad as it did last winter. I won't be able to drive my car.

I'm whining for my boyfriend and the health issues he has now because of a stupid bicyclist that caused his motorcycle accident last week.

It seems he's extremely sensitive to Motrin. The pain med they gave him after he broke his leg.

Said he didn't feel good over the weekend, so he stayed in all weekend.

He didn't show up for work on monday. He doesn't remember monday at all. His job called his dad to go check on him. His dad found him sick, and took him to the hospital. He was in kidney failure from the Motrin. So, he's been in the hospital all week, and he'll be coming home tomorrow. They got his kidneys working again.

I'm a bit freaked out. Because he was sick, he didn't call me until about a half hour ago. So, I just now found out about all this.

And I thought I'd been having a bad week.

Yikes, Erin! How scary! I will say some prayers for him.:hug:

The hug is back!!!:eek::mad: While I deal with it everyday to varying degrees, it's really been giving me a go of it the last few days. I'm not a happy camper about this. Enough said.;)

I thought I was having a bad week, but my boyfriend has had it worse. I looked up what Motrin might interact with to cause kidney failure. High blood pressure pills is one. Hopefully it didn't cause him too much damage, and he'll be ok.

So I thought I needed a nap and proceeded to lie down and watch TV. I figured I'd fall asleep if I was tired enough. :Yawn:

First phone call was from a car dealership where I had purchased a car nearly 10 years ago!! I guess they're cold calling old clients trying to drum up business. I told him I wasn't interested. :rolleyes:

Lie back down and the next call comes in and it's a charitable organization asking if I might have any donations of clothing or household goods. I tell them no and lie back down....again. :tongue:

Phone rings again but this time it's DS and DIL. They had been to the doctor and were giving me an update.....which I wanted to hear so I didn't mind that call. :)

Laid back down and the 4th call comes in!!! :eek::eek: It started off with what sounded like a ship horn. Then the automated call told me that I could win a cruise if I just listened to their sales spiel. Good grief!!:thud:

And now I'm here on the computer because I think I'm not supposed to have a nap at all!!! My phone hardly ever rings during the day......but just let me try to take a nap and the flood gates open! :Doh:

Kitty, do you not have, oh I have a block and can't think of it. It's a service you join free and salesmen can't call, it's against the law. Ours is run by the state. Now your car salesman would have your number and would get through. I'm not sure about the organization wanting donations but I don't think the cruise could have gotten through. I know there are some who can get away with it. Our local fire and police department can somehow. I get all sorts of calls wanting money. They always start out with reminding us to put our seat belts on so I just say thanks for the reminder and hang up.

We do have caller ID so if I don't know a number I can choose not to answer. I have been known to take my phone to bed with me if I know some one is really sick and if it isn't their number ZI don't pick it up while I am in bed.

I'm still feeling like crap. Basically, same crap, different day.

Whining again about my boyfriend and his health stuff that he's got since that bicyclist caused him to crash his motorcycle.

Got a call from him this afternoon. He got out of the hospital yesterday for the kidney shutdown thing. (they're back to work again).

He went to an orthopedist today apparently (told me the other day he had an appointment with one), and he told me this afternoon that his broken ankle isn't healing correctly, and he has to have surgery on it sometime next week. Which makes me wonder. When my mom broke her shoulder, the doctor told her not to take ibuprofen, because it inhibits broken bones healing. Boyfriend was taking Motrin, which has ibuprofen in it. So, now I'm wondering if all the Motrin he was taking not only fried his kidneys, but kept his ankle from healing.

All this is still making me really angry at the bicyclist. The guy who caused the accident. All he got was a ticket, and a mangled back tire. The pictures of the guy's bicycle on tv looked like all he needed was a new tire, and he'd be good to go. He just seemed kind of blasé about the accident when I saw them interview him on the news.

Wish there was a law on the books that would make the bicyclists financially responsible for the damage they cause when they're at fault in an accident.

I just fell down.

I was trying to go outside to sit with my parents, and I was trying to get down the step from the front door onto the front porch.

Fell down before I could get out the front door. Right there in the middle of the doorway.

Couldn’t get up.

wouldn’t have happened if I had the <swear word> ramp that I had asked my dad for last spring right around this time. My sister and my dad’s little sister both mocked me for asking for it. That’s why I didn’t push my dad to get one built. Because my sister and his sister made fun of me every time I mentioned it.

So, I just fell on my butt in front of both my parents, and my next door neighbor. My aunt (not the one that mocked me) had to come and help me get up. She’s a nurse and knows all the good ways to help people get up. I was stuck on the floor in the doorway for about ten minutes before my aunt walked up.

I don’t think I hurt myself when I fell (back feels a little weird tho), but now all I’m doing is sitting here crying. It was scary how fast I fell too. I went straight down. I tried to hold onto the door jamb, but I had no strength in my arms and legs. I’m mad at my sister and my other aunt for making fun of me for wanting a ramp.

so tired...and now my arms and knees hurt. Knees hurt from having to bend them to try to stand up, and my arms hurt because the frozen shoulder is coming back in the left arm, and I have some sort of repetitive stress injury to my right arm from using the walker. Everything hurts right now.

So sorry for your fall Erin. Been there done that. Glad you weren't
badly hurt, but take care, sometimes ouchys show up a day or two
later.:eek:

:hug:

It's been about 45 minutes. I'm starting to feel pain in my arms and around my ribs. Probably from the strain of getting up when my aunt used her nurse super powers to help me get up.

had a bad weekend, feel like crap. I might be canceling my drivers assessment for today (monday).

It has just taken too long for me to get anything done, and now I feel so bad, that I think it might be too late for me to do anything like get my hand controls, and a new car. (yeah, that's back on...if I do good at the assessment, if I take it, and they can suggest what I should drive)

That physiatrist that I had last year just kept putting me off and putting me off on the hand controls. Then the insurance changed, and I had to find a new physiatrist which took forever. Took forever to get the two appointments that I've had with him. Didn't take a lot to get the Rx for the hand controls out of that doctor, but I've gotten really discouraged having to wait so long for everything to happen.

I am so frustrated with everything. My body hurts today. I fell yesterday (saturday) and I'm terrified that will happen again. So weak at the moment, that if I do get the hand controls, I won't have the energy to walk into any stores to do anything once I drive to them.

kind of afraid that I'm going to go wheelchair shopping before I get to go car shopping. I hate MS so much right now.

It's like the MS and the world don't want me to drive, or be able to be independent.

It sounds like you need to pick yourself up, dust yourself off
and get back in the race. Was that Frank Sanatra..:)

No kidding, you need some PT to help get your strength and
mental gusto back on track. You sound defeated and sad.:(
I hear you and I do understand, but that defeatist attitude is
a downward slippery slope.:eek:

Praying for you to feel better soon and help to turn yourself
around.:hug:

I did the driver's assessment today. I was surprised at how crappy I did on the cognitive stuff.

then surprised at how crappy I did the simulator stuff.

and then not at all that surprised at making the car zoom unexpectedly in the parking lot. (the driving instructor had a brake on her side too)

She said that I'd probably need four or five more sessions with her on the driving.

I know which car I'm getting now. Not the one I originally wanted and still want. I think I'm getting a minivan. I have a bad feeling about things lately. I think the minivan will make more sense tho. Hope it's as fun as the car I really wish I could get. Too bad the van will cost more than the car I actually want.

It's hard not to have a defeatist attitude. I really do feel pretty defeated. No matter what I try to do, it doesn't help. Things keep getting worse. I'm starting to raise the white flag.

Everyone goes through times when they feel defeated. But, we all get back up and push forward. If you read what some of the people on this board and/or even this thread, you will see that each of us have been through some trying experiences. There are some on here that are so inspirational to me as they have been through not only dealing with MS but other medical crisis and illnesses/diseases. If you pay attention, you will see that each one has gotten up to try again. When you feel defeated, think of these people and how they have moved beyond the illness to have an normal life, or as normal as they can. For many of us, defeat and waving the flag was not an option.

Five short months ago, I was fighting for my life. If I had a defeatist attitude, I would not have survived. Well, a good surgeon and medical team had a lot to do with it too. But, it was my attitude that helped pull me through and much to my drs. surprise, I pulled through far quicker and better than they anticipated. Again, it was attitude that got me through it all. What also helped is the heros I have met on this site as well as heros that are around me. These heros are fighters. Yes, the fight is hard sometimes and you may want to crawl back under your covers in the morning and give in, but that is not an option.

Count your blessings too and be thankful for what you do have. You have far more than many of us both in material things and support. You are able to go out to eat (something I certainly can't afford to do and I know others on here can't do), you have a roof over your head and your own room. You have been able to remodel your room more than once. You have family right there to help you if you need it or you helping them when they need it. You can visit your parents whenever you feel like it as they are just upstairs. For many of us, one or both of our parents are no longer here and we don't get that opportunity. Cherish that!

Try turning your thought patterns around. It's so easy to get sucked in to negative thinking but it is also easy to turn the thoughts around in to positive ones. Once you start turning those thoughts around, your coping mechanisms will change as well. You'll be able to cope with the symptoms you are experiencing with a positive attitude. Life will become brighter and happier.

Also, I don't remember if you are on an AD. It may be something that you might consider. Some sort of counseling or therapy might help as well. You may learn some techniques that will help you in the long run.:hug:

No. Not on any anti depressants. I would not be compliant to anything like that. I'm barely compliant to taking baclofen for spasticity.

I've already counted my blessings about my parents. My dad's heart problems are pretty bad. He's trying to get stuff set up to help me and my mom. Apparently I have to grow up soon. I'll have to be responsible for helping my mother. (I don't want to grow up yet)

This past year has been really really bad for me. It's been a constant thing with the MS making me feel worse almost by the week. Nothing I've tried (mostly PT and trying to exercise to build up strength) has worked. At least not that I've noticed.

I did go driving today for that assessment. While doing the cognitive tests, I did badly on a couple of them. Which really kind of shocked me. Altho, I do kind of think whoever created those cognitive tests was kind of a schmuck, trying to make it too difficult for some people.

I have to go back for several more classes with the instructor. I was pretty much terrified the entire time I was driving. It felt really weird. I almost didn't go today because I didn't feel good. That might be why I think I did so bad on the cognitive tests. Tired and not feeling good.

When I was done driving, I felt really kind of sick then too. Lot weaker feeling than I have been. Shaky. I got home, and could barely walk into the house.

Sat outside for a little while tonight, and one of my relatives came over. My dad told me that this relative wants my car. She wants to give us money for it. I don't know why she thinks I'd sell it to her. If she could afford to give me what the dealership would give me...maybe. But I think I would want the cash up front, and I'd wait for the check to clear before I'd hand over the keys. Kind of harsh. I know. (I gave away a car once, didn't get any money for it, and did not care a whole lot for how I was treated after giving them my car.)

I need my car for the trade in for a new one. I decided on what car we'd probably need. Not going to get the one that I actually want. Going to get the minivan because I think it makes more sense. It'll be more useful for future MS stuff, and I think it will help my dad out more too. (he wants to get himself a motorized chair to get around in...and I kind of think the minivan is the car my dad wants. (he's willing to get what I want, but I think we kind of deserve the much nicer car like the minivan. We've had to deal with a lot of crap the past two or three years...my mom's west nile virus. Dad's pacemaker surgery)

Just been feeling very stressed out the past year. My body is really uncomfortable. Kind of painful in places. Some things are better since I started taking b12. I'm dreaming again. My brain feels better. Like I can think easier. But, I think that's it for whatever the b12 is helping. It sure isn't helping any of the other neurological symptoms. Those are actually getting worse. It's kind of soul sucking to feel those symptoms coming at me. Feels kind of like I'm being punished for something.

Amen, Tricia. I hope you're doing well today. You're an inspiration to everyone here. :hug:

:I-Agree:

Erin, you have had a lot of challenges...and it's difficult to move through to get a sense of well-being with all that you are going through health-wise, as well as dealing with your parents' health issues.
Dealing with my in laws the last 7 plus years added a lot of stress to my life, making sure they had all that they needed, as well s going over and visiting with them, taking them to docs and shopping, etc. It made the MS worse, as stress tends to do.

I wonder if watching your parents' health issues worsen adds to your MS symptom difficulties, as well as your mood...stress affects our bodies physically as well as emotionally, as I'm sure you know...

You need to take care of this part of your life as you do the rest of your health issues. Each day is a miracle. I suffer from chronic depression, yet I try my best to awaken with a prayer of gratitude each morning for the opportunities that await me. I also thank the Creator at the end of each day for 5 blessings that came into my life that day. It truly helps turn my mood around! It takes work, work work. My mind falls into the negative naturally, so I do these things consciously.

We all are here with thoughts and prayers of healing for you...:grouphug:

Debbie - Good post! And, yes, you are one of my heros and inspirational people that I think of when I feel a pity party coming on. :hug: You have dealt with so much over the past few years and you still got up and kept going. Stress does make the MS symptoms worse, which makes the stress and anxiety increase, which increases the MS symptoms. It can be a vicious cycle if we let it get to us. The key is breaking that cycle as soon as we recognize it.

I too wake up and start the positive talk right away. It really does help set the tone for the day. I wake up and one of my 1st thoughts is, "God, what wonderful surprises are you going to bring to me today?" or something similar. It's positive and changes any background negative thoughts.

Debbie and Trish, you are both my heroes, Erika, Kelly, our little Ali
and a lot more of you, is the reason I get up in the mornings.

Thank you all.:grouphug:

Great words of support from everyone
Determination is a powerful ally, it can be a powerful foe.

Anyone determined to shift the quality of life upwards -even a scintilla- can do so and its a heady feeling, knowing that the power is in you

Anyone determined to remain trapped as a powerless victim will have a heck of a time enjoying life.

I am glad we have the choice.

I admire much of what I read here and get strength from your victories and positive determination

Tricia, Debbie, Sally, Erika, Kelly and many others here are my heroes. I love everybody here. :grouphug: We are a big wonderful "Chex mix" of peeps. :D Don't take all of the the cheese curls ladies! ;) :grouphug:

I called the physiatrist's office today, and asked the receptionist if she'd ask him if I could get some PT. I am so deconditioned that I think I need help trying to get back into shape. Problem is, my insurance only gave me about 45 PT visits, which I used most of them up earlier this year doing PT for the frozen shoulder that I had from last winter, and some other MS stuff.

So, I'm probably going to be paying that out-of-pocket. The receptionist said that she'd tell the doctor about my lack of PT visits left on my insurance. Said he might be able to write a letter to the insurance company and tell them there's a medical need for the PT. Not that my insurance will be paying it anyways, my deductible is so freaking high.

I'm still feeling really sick, which my aunt who is a nurse thought was kind of weird. She said that I've been complaining about feeling sick for months. She thinks I should get checked out again. Last time I went and had a blood test to look for problems the only thing they found wrong was my B12 was super low. (252) Back then, they were checking for the obvious stuff that you'd see on a blood test.

The only reason they checked the b12 was because I asked. I'd had a low b12 about five years ago (345). Was told it was normal then. But if you go by what people here on Neurotalk say, it was low. I will say one thing has gotten better since I found out how low that b12 was, and started taking supplements. I'm dreaming again. Sleep a little better too. Still get the insomnia, but not as bad as before.

Aw that just fetched tears to my eyes, thank you Sally. You're our hero too :hug:

Erin, I totally agree with Debbie and what the others have said. You need to be thankful for what you DO have in life, rather than what you DON'T. I KNOW its hard... I struggle with the same thing at times, as do we all but you are SO blessed compared to other people. I watched my nan suffer from MS (I was only 6 but can remember), I watched where she couldn't lift her head up to eat, had to be catheterised, had no dignity, couldn't walk etc. It was AWFUL, I wouldn't wish it on anyone. BUT she was a fighter, right until the end. Think yourself lucky that you aren't as bad as her and some of the others on here. I know you're only youngish but you've had a good life by the sounds. I had to endure all that at 6 years old and then became ill myself at 12, confined to a wheelchair for over a year and I'm still ill and undergoing tests now. I lost my friends, most of my family except my mom didn't understand, I had to give up school etc. It was horrible but its made me who I am today and I thank myself for that. Without this illness I probably wouldn't be who I am now, I wouldn't understand what its like to be ill and hit rock bottom.

I didn't mean for this to be a rant, sorry if it sounded like that (just got a lot going on at the moment - great nan been diagnosed with terminal cancer). I just know that its hard to 'see' the good things sometimes, cherish the little things because eventually you'll realise those were the big things.

I hope things start looking up for you soon.

To the rest of you, I hope you're all doing well - think about you often :hug:

Erin, I'm sure they'll give you more PT if your doctor is good at listing reasons why you need more...I was told when I was in PT for my knee replacement this winter that I only had 19 appointments YEARLY for PT. I'd gone through about 11 since January, and need to have my other knee done, I hope this fall. What will happen is that Medicare will audit the PT place and see if I warrant further PT. It doesn't matter that it's a different part of the body:roll eyes:

So I hope that you can get some additional PT. I also wonder if you aren't experiencing the symptoms of fibromyalgia. Your explanation of the pain you're experiencing sounds like mine. It feels like someone is running their long fingernails through my muscle fibers. It 's very different from the pain I get from spasticity. It also is exacerbated by lack of deep sleep.

And as for heroes, there are many here who've helped me with info and support over the past years...I wouldn't have been able to deal with all I had on my plate if it weren't for all of my NT Friends:hug:

I've had these thoughts rummaging around in the back of my head for a while. When I first met my neurologist I told her about my daily physical therapy routine and she replied by saying "or you could give yourself a break." During our most recent visit I talked about the new diet and estim therapy I was going to do following, Dr. Terry Wahls' protocol which she used to recover her own mobility and she scoffed. I also asked her about one of my new symptoms, swollen feet and little purple veins all over my ankles. She replied "It's probably because your always beating yourself up." But when I asked her to order me a motorized scooter she was all for that.

Sometimes I feel like my neurologist expects me to throw my hands up in the air and say "Yep. I'm done. I've got MS and I should stop working, stop parenting, stop being a partner to my spouse and just give up. I am MS now, nothing more!" Sadly there are only 3 neurologists in my entire county and they are all at the same practice so the choices are slim.

I'm very glad I am the type of person who when told "No" says, "Yeah, I don't like that answer I'll figure out a way."

Good for you.:yahoo:

Your Doc might be trying to say "don't be so hard on yourself"?

Erin - I'm sure you can get approved to have some more PT. It may take some fighting but if it is medically necessary and the doctor's can prove such, they really can't say no.

Ker0pi - I just posted on your Wahl's Protocol thread. I'm so glad it is working for you and you are finding ways to make things better for yourself. We often have to do that and be our own advocates when it comes to our health.

Ali - Sweetie, you have been through so much and despite it all you have accomplished so much. We "cybermoms" and "cyberdads" have watched you grow and are all so proud of you. Your tenacity is definitely inspiring and I hope everything works out for you.:hug:

Erin, I don't know if there is any kind of medical school in your area or not but I know in one of our local universities, the various schools, dentistry, physical therapy, etc that needs to have practical practice and offer days that they have clinics at a very cheap price

I got okay end for more PT. Starting that again tomorrow.

Not sure I'm making it to the appointment. Felt sick all night last night. Either a virus, or some food poisoning. Hopefully. Because I'm always feeling sick, I can never tell if it's the ms causing it. Or if it's something else.

Is it normal with ms to feel nauseous all the time? Shaky? It's constant. Doesn't stop.

There is something very weird going on. I only just noticed this, and it's never happened before.

Last night I found an unusually large amount of hair in the shower drain. On top of the drain. I know sometimes when a person is sick, hair can fall out. No idea what caused it.

And I feel worse now than I have been. Scared to call the neuro because he'll just tell me "that's what ms does" and not offer any solutions.

Feel like I'm dying.

no words of wisdom here except to say I am thinking of you.