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Old 04-30-2009, 11:04 PM   #1  
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Wink PHYSICAL CHALLENGES ~ May's Thread

WELCOME EVERYONE ~ Please join us in our thread: to give support and encouragement; to share ideas, and/or just chat with one another about everyday issues ...

This special thread is for anyone with any kind of physical obstacle and/or challenge like SB, CP, MS, MD, PK, Lupus, Osteo, Arthritis, Rheumatism, or any other condition (s), whether genetic or acquired (like injuries), that causes some physical limitations and/or difficulties.




HAPPY MAY EVERYONE


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Old 04-30-2009, 11:09 PM   #2  
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HI EVERYONE ~ WOWIE, can't believe it's that time again ... time to start another brand new month! Yah, May has finally arrived, and we are starting to get nicer weather; and the snow is finally melting. You would hardly believe how much has melted in just over a week's time. We had a bit of light rain today, and even that helps to melt what there is left of it, mostly in ditches and where snowhills were ...

So, spring is finally here for us too -- hope you all have a lovely, spring day tomorrow as well!!! ROSEBUD
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Old 05-01-2009, 10:37 AM   #3  
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Hi Ladies

Wow yet again another month is upon us in a flash so Happy 1st of May. Today here the weather is lovely so no complaints there, went out on our daily walk today though the weather did look as though it was going to turn to rain at one point and we were going to get drenched for our troubles The weather held off and we had a pleasant walk after all thankfully. Must have been our day to see smoking vehicles on the way there a car exhaust was chucking out smoke and smelt horrid to boot. Then on the way back a bus with a police escort was pouring out smoke via the exhaust causing a plume of white smoke in its wake.

Been busy really today since the moment I got up as after breakfast was our daily walk. Then shortly after returning I was doing the preparation and cooking of dinner. Decided to do a twist on a dish I have made before which uses frozen raspberries. This time I used a mixture of frozen berries and it turned out lovely. All you do is thaw the berries until they are very nearly defrosted. Then you drain the juice and discard this. Then mash with the back of a fork to a jam like consistency. This takes a bit of elbow grease or shall I say wrist Or you can cheat like me and use a hand blender or ordinary blender to achieve the same thing in less time and less hard work. Then if necessary use a little sweetener to sweeten especially if you have a sweet toothed DH like mine Then you just layer a spoon full of the fruit mixture and then a spoon full of plain yoghurt (or low or zero fat substitute) into a desert glass continue to do this until you have the desired amount. There we have it a simple dessert which is easy to make but looks pretty.

After lunch I have then gone on to prepare vegetables for a casserole, and for serving steamed alongside the casserole. That seemed to take a long time you do not realise that the preparation for a casserole takes so much of your time. I have then gone on to make sandwiches for tea also so now I can spend most of my time relaxing now the bulk of the work is out of the way.

VALDINE So nice to hear from you and sorry to hear that you are having a tough time of it due to the fatigue element of MS. I know a little of what you are experiencing and I do not have the added element of working full time. So I have the luxury of sleeping or resting when ever I need to due to the fatigue. I have also been prescribed amantadine 100mg one tablet twice a day. I do get some benefit from it though it is not a miracle worker. There are other medication out there on the market so if this does not work for you for whatever reason don't give up talk to your doctor to try another route. I can not suggest medications as here medications are under different names frequently and secondly they may not have been licensed in Canada

I can understand your dilemma in telling people at work about your MS but like you are finding out you maybe cornered by your illness into telling them. I am sure it will not be as bad as you have imagined telling them and their reaction. Though I know that we play through our minds the worse case scenario but so frequently it is not like that at all. I don't know if people view the illness differently there to the UK but I find people have been very helpful on the whole towards me. Maybe a bit too helpful if you know what I mean at times but I know they mean well. I did have to address the issue with my parents but did it in a nice manner saying I will ask for their help when I need it. They accepted it well and no friction caused between us. You may have to be prepared to address the same issues as I have but I am sure if you do this tactfully the outcome will be positive. Let us know how you go on with this matter.

ROSEBUD The spit chicken sure does sound nice though I am not sure if I could get hold of it in the UK. Sounds like you still remain busy and kept out of mischief

Reading of the sad scenario of the gentleman your mum cared for whom was quadriplegic makes me realise how lucky I am. I was reading in a book at the MS centre about a lady now whom has taken up the new scheme we have for disabled people who need care from nurse(s). It now allows the the person in question to be in charge of their own care as they are the employer effectively. They get x amount money for there care and they can employ who they want and they call the shots so to speak. Like the lady in the article said now I choose what time I get up and what time I go to bed rather than being told what to do. Yes she said at the beginning she went through a learning curve but she is now a 100% happier. She now employs 4 people to care for her daily needs and socialization to coffee mornings, church etc. For me this is a move in the right direction allowing people to have the same basic rights as some one who does not have challenges in their life. She also said for the first time since she had required help she had began to "live" and even persuaded nurses to take her on some of her more hair brained schemes as she put it such as sailing in a square-rigged tall ships especially adapted to take a whole host of disabled conditions.

It is sad to see that food banks have popped up all over due to the economic climate. I am not sure that we have such things here but we do have drop in centres where you can get a warm meal daily. Plus on the streets the salvation army and such organization (some none religious) have "soup kitchens" where they give out warm food in the evening. They were called soup kitchens from the times past when soup was given out, I still think soup is given but other things maybe also.

I will have to close now as I have become very tired and need a little lie down to recharge those batteries. So take care till next time

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Old 05-01-2009, 09:59 PM   #4  
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HELLO LADIES ~ Thanks to RUTHxxx for red-stickying our new May thread to the top of the forum for us. MEOWEE is still away, but Ruthxxx says that she should be back next week sometime.

Well, DH was very upset this morning ... guess what we woke up to today? Yeppers ... some of that ***** once again. Dh comes in the room to wake me up, no less, to inform me that we have *****, and they are big, giant flakes too! I told him not to worry becuz they will melt as soon as they touch ground -- well, that was a bit of an exaggeration, but they were all gone by tonight becuz the sun came out just in time to melt the few that stayed a while! I hope that's a sign for tomorrow that maybe we will have some sunshine ... sure hope so!

HI PURPLE ~ glad you were able to go out walking today and that you had good weather too. Since our weather was rather yucky, we just stayed home, except DH did run one small errand for me today. I just did regular daily stuff, as I try to rest after a day where I did lots of walking becuz me feet and legs hurt so much now that I must rest them as often as I can. My doctor told me that he would like to see me put them up at least three (3) times a day; at first I thought that was a lot, but now, it has become a necessity at least two (2) times minimum. I am trying for three times now to see if that will help my situation some.

Tonight, DH is over at a friends and they are working on one of his hobbies, which has become a group effort now. I am glad for him that he has found some friends that have the same interests as him, and are so helpful to DH (may GOD bless their hearts for all the help and encouragement they have given DH lately).

Yes, as I think I shared with you before, my mother worked with disabled persons (as a homecare provider through the government); and she was very good at it. Things are somewhat better now from what I hear, but as you know, it's hard enough to live with so many physical challenges, but not to have enough income for basics like food and good personal care, would be an added burden these people just don't need!

You are fortunate to have such a special home. I have such difficulty getting in and out of our tub; I have to lean on my geri chair or I would definitely fall. I just sit on that and have a shower. I would love to have a walk-in shower like you have and so much room too; oh well, maybe some day we'll find such a place, but there are so few in this town and so many who need them, that it's unbelievable.

DH and I are trying to find out how I can get an electric chair or scooter so that I can get out more. Right now, I can't go to a mall, or to a large department store, or around the neighbourhood, becuz my feet and legs and back just hurt way too much for that. I am kinda stuck at home now and only go out 1 day a week when I feel up to it and I have to take some pain meds before I go to be able to walk around the grocery store. If my feet hurt too much, then we just leave; and DH goes back later and gets what we missed. We have had to do that many, many times ...

Sometimes, I go out for a ride in the car, but I don't go walking anywhere. We do that just so that I can get out of the house, or I would go 'stir-crazy' -- That's also why we go up to the lot and my Dad's cottage so much: becuz we need to! I love hearing about your trips all over the place as it's like travelling vicariously through your stories.

Anyways, DH just got back and it's time to go for now. Hope you all have a SUPER-DUPER SATURDAY!!! ROSEBUD
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Old 05-02-2009, 06:50 PM   #5  
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Okay - so I actually started taking a coworker's (with MS) amantadine on thursday. (she gave it to me a week ago -- which really freaked me out/bursted my 'I'm fine' bubble) But the woman reminds me of you purple - she's younger but she has dealt with TM symptoms as well. She told me the ms clinic gives out amantadine for fatigue as soon as it comes up and didnt even blink handing over her meds. She is resiliant just like you. (and everyone else on this thread!)

I started 100 mg twice a day and it's not a drastic change.. but it's something.. along with a little bit of insomnia. I went into my GP last month who ran some regular bloodwork and shrugged... now I'm waiting for my MS clinic to call me back and give me my own amantadine px. I didnt want to start it without their permission.. but things are desperate -- I'm sleeping, eating, exercising as much as possible.. and napping whenever I can so desperate times called for desperate measures.

I told my boss i have ms.. he said 'I know' lol. So either he has an exceptional memory - I was open about my dx at my last job, where his organization overlapped ocassionaly -- or people talk. Either way. he knows. I dont know what accomodating fatigue looks like.. but I dont want to cut my hours since I'm the only one supporting myself.

sorry im rambling about my health. i'm kind of hoping to just ride this out.. maybe tomorrow will be better and my energy will come back leaving me mentally capable to do my job the way I'm capable.

the last thing confirming something really is wrong is that i've lost six pounds this week without trying. (I only lose big numbers now when I'm really struggling with some sort of MS symptoms)

things are good. I hope your snow melts fast rosebud - Ours was offically all gone YESTERDAY yyyaaaay!

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Old 05-02-2009, 10:36 PM   #6  
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HI LADIES ~ Well, we had a mishmash of weird weather today: we started out with sun, then some nasty clouds rolled in from the west and brought rain, then this afternoon, some big snow storms rolled in with lightening and thunder ... even. And indeed, the flakes were GIANT in size ... tres, tres, weird. Most of it melted except the last big fall just before dark.

I had to disconnect my PC, but when it all stopped, I hooked everything back up. I had put our chicken in the oven to heat up while I cooked veggies and new potatoes, but a fuse burned out and when I went to get out the chicken it was still cold. So ... we just heated it up in the microwave; thank goodness it was precooked! Dinner was a tad late becuz of that though ...

HI VAL ~ See, we thought as much: that your boss already knew about your MS; things like that get around, and not necessarily for a bad reason, and if someone told me they had MS, that IS something that I would recall. I'd bet many people admire how hard you try while living with such a challenge as MS. I also think it's nice that you have a co-worker with the same condition that can be a good support to your right there in your work place as well.

I also think it's better if you get your own px for MS meds; for safety reasons and to make sure your doctors know all the meds you are on. I have had to accept that I can't do what I used to, and it isn't easy; it's a daily thing sometimes. My faith is what gets me through really; and I don't know what I would have done without it all my life, and even more so now.

Don't worry about ranting about your illness and stuff like that; that's what we are here for. Purple and I commiserate about our daily challenges all the time; and how can we support each other if we don't know what the other is going through at the time? Sadly, the move we had to make last fall really set me back physically. I was hoping that over the winter, with lots of rest that things would improve, but they haven't yet so far. I actually find it harder to walk now and don't get out as much as I would like to.

I am having to face that I need some more assistive devices now, like I mentioned in my last post. Some days, I have to use two canes just to be able to walk around my home. I hate to take too many pain pills, so I only take them when I absolutely have to or when I am going out. I try to go out walking/shopping once a week and from spring to fall, will try to get out for at least a drive. I hope to do short walks (about 5-10 minutes) out at the lot this summer, but we are gonna see if I can get an electric scooter type thing ... I just have to accept this.

I'll be honest with you that this has made both me and my DH very sad, and we have both cried a lot; but we just have to accept it ... we just have to! And like I told DH, if I can get a scooter, that would likely IMPROVE MY QUALITY OF LIFE, and that's a positive thing really! I know like BEVERLYJOY, that the adjustment will be hard for me, but I'm praying that GOD will help me and keep my spirits up.

And eventually, my tears will turn to joy when I see that I can actually do more with more mobility. We are trying to find out where I can get such a thing or how, and we are now looking into this. I know two people who use an electric chair/scooter to get around and canes to access the few places they can't take the scooter like Tim Horton's, which really should do something about the lack of accessability, I must say.

I think that's one thing that I have been afraid of -- what family and friends will say or think when they see me in one; and the other is, will I be able to go to places I'd like to go to? So ... we will see what happens, and I will keep you all posted as we go along.

Anyhow, that's enuff crying for tonight: my broken heart will mend in time; and my sweet JESUS will carry me through some how, some way. And, DH has nice hoppin' music on and it is very pleasant to listen to. He is feeling much better tonight; his back is getting stronger; and we are so grateful. We figured it would take a good week.

We hope that you all have a peaceful and serene SUNDAY tomorrow. We will make it my friends, we will make it! Take good care and have a nice Saturday night! ROSEBUD
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Old 05-03-2009, 05:08 AM   #7  
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Hi ladies

Well I have gone and got myself right confused this morning and though a previous post had been munched by the cyber fairies so proceeded to type a new one I then found out if I had used my eyes, plus brain properly this was not the case and could have spent a whole lot less time posting this. So I have had to start again.

Yesterday turned out to be a rather busy one as we went to the farmers market to get some bits and pieces. Namely the jam (apple and blackberry) plus some no added sugar wholemeal scone. After the farmers market I went for coffee and due to the business of the cafe asked a lady to join us. The elderly lady was lovely so interesting to talk too and she was from Yorkshire but not far from where we are to holiday later this year.

Then I cracked on with some housework and that seemed to take a good long while longer than anticipated I must admit. Then I cooked dinner by then I was all done in. Not a lot of energy in the pot I must admit. For tea I did a casserole, then had some stewed apple/blackberries which was lovely.
I am so glad we went blackberry picking they are coming in handy now.

VALDINE Glad you have dropped by to tell us of your plight. I know how debilitating fatigue can be. Sorry you feel it calls for desperate measures. I really hope that things get sorted quickly for you regarding a prescription for amantadine.

I do not think myself as resilient strange how others view us. One attitude I have had is I will not let MS rule me I will rule the MS and that is my take on it which has held me in good stead.

Do not underestimate yourself look at what you have achieved and done in your life. You have a full time job, you own your own home and do things on the council they are things to be proud of. I had not achieved so much at your age plus deal with the ups and downs of MS. I think we all think others cope far better than we do but in fact not always the case we forget our own struggles we have overcome.

Glad your boss knows about your MS and so "telling them" was not so bad after all. I am sure that is a weight off your shoulders now you have let them know and your not worrying about that. Your not rambling on about your health we know what struggles we have all to over come with dealing with different challenges. Having a sounding block is sometimes good and helps you sort the matter out. In a way having MS or other disabilities can be isolating as frequently we know no one with the disease itself. Up until just over a year ago I knew no one with MS and that was hard at times.

ROSEBUD Yes the period of adjustment has been hard for me as I am miss independent and a stubborn old moo . Though eventually even I realised the time had come to use a walking stick full even with DH. A bitter pill to swallow but at least I am mobile. We have talked over about the future my DH and I about the possibility of needing scooter. Though if that gives me the mobility and quality of life I need I will use it. I am sure though I will not go so gracefully into using one though I can understand the heart ache and the tears your DH and you share. I am sure though the scooter will give you the quality of life that you do not have at present plus open up a whole new world of things you can do together which at present you can't as your unable to walk that far. I am sure when you do some things together that you haven't for ages due to your decreased mobility you will be so pleased that you took the step to use the scooter.

I am sure my DH is worried about my MS and my future but never lets me see typical British man stiff upper lip and all that Men here in the UK do not show their feelings they translate that as being weak for some bizarre reason I am sure that the MS centre has been a great release for him being able to talk to other carers in the same boat as him.


Time to go and do my hair as at present looks as though I have put my fingers in the socket and had a fright So take care of yourself and will drop by soon.

purpleorc

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Old 05-03-2009, 09:56 PM   #8  
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HI LADIES ~ well, today was a much nicer day; we had some sunshine on and off all day, which was way better than ***** and even though there was a bit of a breeze, it was still around 60 F for most of the day. DH cleaned the car out and then got it stuck in some wet mud in the back yard, so then had to wash the outside as well. A nice neighbour came along with his truck and pulled DH out.

I just stayed in and rested most of the day. We had roasted chicken leftovers with a pan of roasted veggies; very filling and low-sugar chocolate pudding for dessert (only I saved mine for my snack as I was full at dinner). Our weather is supposed to be good for the next two days, and I hope they are correct as we have to take some friends to see a doctor in the city this week. I want to go for the fun of it, so hope we have good weather.

NIKO and I spent a little time on the porch this afternoon (he more than me), but I came in before him as the wind picked up a bit, but it was nice for some fresh air and a bit of sun. Did a puzzle and some reading today as well; really tried to make this a fun and relaxing day to get our minds off things.

PURPLE ~ yes, my DH is like your DH, in that he tries to hide how he feels, but eventually it all comes out. He said that he noticed that my pain issues were slowly getting worse. This happened to me once before and I bounced back with an extended rest; but I did have to start using the cane(s) as you know. I agree that a wheechair and/or electric scooter (which is what I would prefer to have) would likely make my life even MORE enjoyable giving me more mobility than I have now. DH says that we should get both, and I think he's right.

So many times, we haven't gone somewhere just becuz I cannot get around as I would like. People always ask why they don't see me out: that is the reason. I keep telling them but some of them just don't get it. I tell them -- on the bad days I stay home and don't go anywhere; you will only see me out on those rare days when I have less pain issues.

I totally agree with the things that you said to VAL -- we don't see ourselves as resilient, but others do. Yes, I may get down for a short while but my faith helps me to bounce back; and like you, I am trying to keep a fighting attitude. There are many people who have had setbacks and live in similar situations and are living joyful and victorious lives: JONI ERAECKSON-TADA comes to my mind often (I read her first book and have seen her on TV many times). She was a skiier and had a terrible accident and ended up in a wheelchair most of her adult life. She admits she has bad days like anyone else, but she has also been a great inspiration and example to many people over her lifetime.

BTW, thanks for the encouragement and the good laugh about the hair too! Laughter is a great healer, isn't it? Helps to make life so much more pleasant. The night skies cleared up and we could see the stars and the just over half-moon, and it was pretty last night. I really like looking at the stars and the moon, especially on those occasions when they are so close they look like you could almost reach out and touch them.

Anyhow, it's time for me to go and put my legs up again; gotta rest them as much as I can. So, take good care ladies, your friend ROSEBUD

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Old 05-04-2009, 06:32 AM   #9  
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Hi Ladies

Typical bank holiday weather here it is raining . My DH went out early this morning to go and get a newspaper whilst I was still in bed. He took Rizzie for a little stroll DH said was very reluctant to get out of bed and then was even less impressed when he found out it was raining Though on the walk he was as good as gold. I think that was due to last night on the walk in the evening he was in the preverbal doghouse after his antics. We have one of those extendable leads it was not on full extension only out a little way. Though for some reason he chased after a cat pulling on poor DH shoulder. Normally he never reacts Rizzie unless something makes the first move as he is very placid. So whether the cat took a swipe at him and that set him off I do not know. The next door neighbours have 2 cats but he has never chased them the only thing he does is stand and stare at them virtually nose to nose on several occasions Needless to say the cat shot up a tree and Rizzie was told off.

Made some muffins yesterday that were very low in fat, only used egg white and pureed pear instead of fat. The only fat came from our semi skimmed milk. Need to tweak the recipe more in my opinion as it is a little high in sugar for my liking with 6oz of sugar (3/4 cup). I did use half and half sugar which is half sugar and half sweetener but still I would like to get it down somewhat. I made blueberry muffins and they tasted good. Another sneaky way to get fruit into DH what with the pureed pear and blueberries I thought that was quite a bonus. All DH see is muffin not the sneaky bits of fruit I have put in

ROSEBUD Yes some people just don't get that our disability stops us from doing things due to the pain or it is just too plain far to walk. They see you on your good days and think that you are like that all the time so just are making excuses.

I don't know about you but you just gradually stop doing the things that you liked to to as your are unable to walk the distance it isn't until you stop and take stock do you realise how much you have given up without realizing. I am sure when you do eventually get the scooter and do various things that you haven't done in such a long time will you understand how much you had stopped doing. I am sure that is going to be the case for for me whenever I have to use a scooter. I think the first time I will use one is hire on from the scheme we have in our city called shop mobility where you hire for a small deposit of £5 (about $8) which allows you access to the shops around Nottingham without having to walk the great distance that some are.

I had never heard of Joni Eareckson Tada until you mention this inspirational lady so I have been to the internet search engine and enlightened myself further. Yes your right we all have our bad days even those people like Joni who are great advocates of channeling our negative energies in to positive ones. Like you I have my bad days and have a little weep and then pick myself up. I often get like that if I am exceptionally tired and then mole hills can seem like mountains. With a good nights sleep things are in perspective again no longer are those mole hills mountains to climb. I realise we are human and this happens to everybody whether they have a disability or not. It is just part and parcel of life and the path we all travel along. Thankfully I don't often feel that way so I have been blessed and someone is looking over me.

Glad I made you smile about my hair at the moment I am trying to grow out a fringe (bangs). I plait my hair every night to go to bed so it keeps it tamed but my fringe part at the minute is not long enough to catch into the plait. It has a long way to go and like watching a kettle boil it seems to take forever when watching it . So until the moment I can tame it my hair in the morning is very unruly

No further news at present I can think of. So I will close and go off and make a cuppa Hope your all having a wonderful bank holiday dispute the weather not being exactly sunny


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Old 05-04-2009, 10:19 PM   #10  
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HI LADIES ~ we had a gorgeous sunny day today -- all day, so I got lots of good things done today. I did some laundry and washed my cushions for my couch/sofa as well. NIKO and I stayed home and rested whilst Dh took our friends to the doctors in the city. We sat out on the porch in that warm & cozy sunshine this afternoon too. Then I put my legs up for a rest until DH got home.

Just had a lighter dinner tonight, with some coleslaw; also make a lovely, homemade veggie-beef soup and it that for lunch: very filling and yummy. NIKO got into some muck outside tonight and left paw prints everywhere, so DH washed the kitchen floor for me as I was soooooooooooo tired. That was very nice of him, since he let him out there to play!

HI PURPLE ~ you are so right, as my health problems increased, I started avoiding going to certain places. Some places are just not very accessible ie too many stairs for me, so I stick to those places that are better. They win in my books, simply becuz they thought about accessibility when doing business.

We have looked into some things; no place around here loans wheelchairs or rents them anymore, but two companies from the city will rent you one by the month or year. We don't know the cost of that though. They send a rep down here once a week or month and you go and arrange for this. We have also decided to look into something second-hand to buy as that may be an option if we can access them. I'll have to call first and see just how much they charge per month.

Well, it's time to get these legs up again; and that's all the news for now from here, so take good care, ladies ... ROSEBUD
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Old 05-05-2009, 07:30 PM   #11  
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HI LADIES ~ well, we had another beautiful day today; and the temps reminded us of an early summer day -- 73-75 F. Spent a while on the deck to catch some rays. Decided to really make today a 'rest' day and didn't do any extra chores, just the regular daily stuff like meals and dishes. Did do a light tidy of the bathroom which I do regularly anyways.

We had a lovely steak dinner tonight with mushrooms & onions and salad; plus a few 'small' new potatoes (I made DH hamburger steak, which he prefers). THis is a perfect dinner for a hot, summer-like, Spring day ...

I was good and put my feet up twice today already, and will do this again this evening. I also had a bit of special kind of cool hops concoction just before dinner, and that really helped my feet and legs feel much better ~ a very pleasant side effect, I must say -- and this is something DH says that I would do well to remember! Haha!

NIKO and I are going out onto deck for some fresh air to take in the last of the sun for this evening. We got my stained-glass suncatcher put up in my kitchen window today -- finally. Dh kept putting it off, then he'd forget and so on; I told him that that was his first job this morning and that's that [oh dear, what grammar; that's probably way too many thats in one sentence]. It looks really pretty there though too; the suncatcher, that is...

Well, other than putting out some food for my birdies and watching them fight over the NIGER SEEDS (and, we can't believe just how much they Looovvveee Niger Seeds; so it looks like we will be buying a much bigger bag next time), we had a nice, leisurely and uneventful day. Hope all you ladies are also having lovely weather and enjoying yourselves outside a bit as well.

Take good care and have a WONDERFUL WEDNESDAY!!!ROSEBUD

Last edited by Justwant2Bhealthy; 05-05-2009 at 07:34 PM.
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Old 05-06-2009, 01:31 PM   #12  
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Hello, Friends! So sorry it's been so long since I've been here. I just seem to be unable to keep up with everything I need to keep up with. I've read all the postings, though. There seems to be a theme with fatigue. I've been very tired lately as well and my MS symptoms don't seem to be resolving as they usually have, in fact, some have gotten worse in the last few weeks. Is there any seasonal connection with fatigue? I've wondered if some of the fatigue was due to our excessively long winter this year. But, my numbness and stabbing pains have become more frequent in the last couple weeks and I've had food stick in my throat much more frequently than during what had been normal for my "attacks". Oh, well, just more to get used to, I guess.

Rosebud-some of your posts brought tears to my eyes. I hope you are feeling better emotionally about your situation. It's always hard to come to terms with limitations. I've had some teary days myself since getting the final diagnosis. I also hope your DH is feeling better. Those back pains are hard to deal with. My own DH hurt his back again playing baseball with the boys and has had to take off a couple days of work, as he couldn't bend at all. He went to a chiropractor and it seems to be helping some.

Purple-I also had to laugh about your hair issues because it's such a familiar scenario to me. Mine's short, but that just seems to make it stand up worse when it misbehaves! Having your DH working at your MS center probably helps him immeasurably in understanding what you go through and in knowing how to give you support. My DH is still at the "ignore it and maybe it'll go away" stage, but I'm hopeful he'll come around. I have really liked some of your ideas on reducing sugar in what we bake. I'm going to have to try to modify some of my recipes for baked goods, so we can enjoy them more often. Right now, I really only bake sweets for holidays, but DH misses his muffins, etc. He can't seem to finish a meal without eating something sweet for dessert, like Oreos or some other cookie or candy bar. I have to pack his lunch with a nice variety of fruit and sweet things or he thinks he won't make it through the day

Val-I hope the meds help your fatigue. I've not ever thought of asking the doc for any kind of med, as I seem to get a lot of negative side effects from any med, even just OTC stuff. I wish I was like you in the losing of weight when things act up category, but I'm just the opposite. I've had a bad few weeks here with going down 1, up 2, down 3, up 2 and on and on. It always seems that the worse I feel the more I want to eat, which is bad, bad, bad! But, good job on 6 pounds gone!

Well, hope you all have a great day! Take good care of yourselves and enjoy whatever spring is bringing at the moment, because it's sure to change without much notice! Hugs to all
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Old 05-06-2009, 02:45 PM   #13  
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Hi everyone..im rosey from alaska,i found your thread and can relate and wondered if u mind if i join in your group? I usually post in the diabetic section(one of my many issues) but i am also handicapped using a wheelchair and walker..in the last yr my whole life has turned unside down and im now going down a diff road not of my choosing..i found your comments inspiring and the issues we have similar to mine and thought maybe i found a home and some support for myself here with u all..im 60,married,2 daughters whoalso are married,4 grkids,live in a log home with 3 fuzzy(dogs) children.. i have had back injuries and pain all my life and 1 leg partially paralized,last april the injury flared up and i lost the feeling in the other leg..which led to surjury x 3 and a hospital stay for 4 1/2 moths,infections and catching mersa..was told i would never walk again and was to be put in a nursing home..after many dark hrs all i wanted was my home and family..and begged to be given a chance in rehab as the surjury cured the pain but my legs and feet are still numb..anyways with the help of family,drs and therapists i am now walking with a walker and using a wheel chair and most impt im home..i was sent home with home health care,iv,s and lots to learn..one weeks later iwas back in the hospital for another surg as the infection traveled to my wrist and i could get around..another 2 weeks in the hosp and then home to pick up my life..after crying and feeling sry for myself i decided that God had given me a 2nd chance that i survived for a reason and i to find joy in the cards dealt to me..so with the help of my dh and friends and my sil and dd we made my home handicap acessable,bathrm chairs,rails wheelchair ramps,lift chairs..it took awhile but i have learned to do all i did befor and then some just in a diff way..this winter was hard on me as i couldnt get out becus walking on ice with numb feet is scary..so i went from completely dependent(couldnt even go to the bathrm alone) to being able to stay by myself for days as my dh enjoys the outdr things he loves..not every day is an A+ day.. and i dont want to be a burden on my family..somedays i just need a sympatheic ear..those days when everything falls on the floor and i cant reach them..or want to go shopping and cant u know those days and your words in your posts inspire me..my life is good but somedays i just want to cry for what was and what isnt and u all seem to understand that..so what diets do you follow and are u able to exercise any advice would please me so..and can i give kind words to all of you rosey
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Old 05-06-2009, 06:26 PM   #14  
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HEY VAL ~ I want to apologize for missing that you lost 6 lbs!!! I know that you are concerned about the reason, but still overall, that is a good thing, as Martha (Stewart) would say ...

HI RONNI ~ thanks for the encouraging words; I didn't mean to sound so glum, but the truth is, we all have those days when we are just EXHAUSTED! I think I was just physically and mentally exhausted from trying to battle all the daily pain and kinda feeling like no-one cares. I decided to take some pain meds and that helped a bit, but more rest and believe it or not, an old remedy came back to help me again.

I don't know why it's working for me, but it is; and I know it isn't for everyone, nor would I say that everyone should do it ... but yesterday, I drank 1/2 cup of BEER and the pain in my feet and legs went away. Now, why is that? I decided to put my feet up more; and today, they started to hurt again by about 5 pm so I drank another 1/2 cup of beer, and the pain went away again. DH said not to worry about it, becuz 1/2 cup does not an alcoholic make! He does like to tease me, that's for sure.

Oh, DH is back home for dinner, so gotta go for now, but will BBL to finish my post ...
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Old 05-06-2009, 08:22 PM   #15  
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OK, I'M BAAAAAAAAAACK ~ just like a proverbial pest ... We had our dinner (I had cabbage rolls and DH had Lasagna, as he doesn't care for CR's too much); I had baked apples for dessert and DH had a chocolate pudding. Then I did the dishes and filled up the birdies feeder, fed NIKO; and now I can do whatever I want for the rest of the evening ... phew!

HI ROSEY ~ from one ROSE to another, to our thread; it's nice to have someone new join us who understands our issues and predictaments so well (as much as I wish we all didn't have them). You've been through a lot over the last while too. I'm so glad that your family came through for you and have helped you to modify your home so you can live at home where you should be (IMHO).

I have worked in four (4) nursing homes or long-term care facilities for those with serious health issues (not just age-related); so, I can really relate to why you want to stay in your own home: that is my greatest desire as well. This place isn't too bad, but there is room for improvement and it is hard to make them in a private, rental place. We have good landlords though, and we'll stay here as long as we can live here comfortably. So far, we are adjusting pretty well ...

I am following a portion-based program, whole foods, volumetrics-type (lots of low-cal veggies); watching my sugar and processed carbs as well, as I was pre-diabetic [my numbers were good today -- 5.3], but have to keep my eye on them regularly. It's like the old diabetic portion plan from years ago: I find it very easy to follow; but I do measure things like cereal and cooked pasta, and so on.

For exercise, I have hand-weights, do chair aerobics, toning reps like tummy & butt crunches , ez yoga-type stretches (of course, for the physically challenged ) , Tai Chai for beginners, and plain walking -- when and as I can do that. I like the chair aerobics as you can do reps and make your arms stronger; and I also use a stretchy band a little as well.

This may sound crazy, but I'm thinking of buying myself A SET OF DRUMS, as I love music so much and someone told me that playing the drums is easy to learn and burns lots of energy. I have wanted to do that for quite some time, but just never did it -- it was one of those secret little dreams that I always wanted to make come true some day, ya know . I think this year will be the year ...

Well, DH is feeling much better; actually, looks and acts like his old self to me. Thanks for all the prayers and good thoughts. He's been out and about doin' his hobbies the last few days; tomorrow he is going to stay home as the weather has gone from to cloudy right now .... hmmm. May be in for some tonight.

Well, that's all the news for now and that's a lot to read anyways; looks like a novel from here. So, take good care ladies, and isn't it nice to know that we can come here and there are people who not only care about us, they also truly, truly understand what we are going through too! Have a great evening and a THRILLING THURSDAY!!! ROSEBUD
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