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Hey Uppity, can you take a minute or five?

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Posted 11/16/2006 7:58 PM (GMT 0)
Uppity,   I didn’t want to put this on the forum, but then I can’t email it to you, and I certainly understand why.   That being said, I need your council.   For almost a year now, I have tried to understand my MS.   Like most of us, you know that individuals are as different as is their symptoms and DX.   I am going crazy trying to get a grip on this medical problem. I thought I finally accepted it, but somewhere deep inside, I keep looking for it to go away. My wife calls it my Superman complex. Being very active all my life and then MS, is like working your way up the racing circuit, until you have the poll position of the Indy 500, and instead of the fastest car on the track, someone hands you the keys of a broken down, rusted, rambler.   I have read, as others have, of people that have one exacerbation and feel great for years. I have read that some people never have any more problems after their DX.   I read about how people go through a remission and all their symptoms disappear.   So after you read those things you become full of self pity, or wonder why you don’t do that, or when, is this darn disease going to give me a break.   But every day is a struggle   and you start wondering if you are already at SPMS or even PPMS. Especially since the doctors didn’t classify you or really tell you how you would feel day after day in the real world. Or what you can expect as the months, year, years go bye.   So we have MS forums, where people struggle to have real time concerns and questions addressed by peers that certainly have lived the MS life, although maybe a bit differently, but still are living it everyday just like me.   I have read that “older” people have a higher chance of going straight into SPMS or even PPMS then their 40,30,20 etc counterparts. The fact that in the upper 50’s, your brain is already starting to reduce ( atrophy ) and your body is already moving itself to old age status, you shrink in height, your vision is affected, etc. plays a role when MS hits. And in many older cases, MS has been there for years. Older people don’t have as many lesions but their gate/leg problems/leg weakness is worse almost at the outset of the disease.   Now, you may want me to get to the point. Fair enough. I had ms symptoms and ON... months or maybe a year before an Ophthalmologist at a routine exam caught the ON, and started the ball rolling. 3 weeks later, I had what I now know was a major exacerbation. Putting me down for almost 4 months.   But as others believe, I was told that the ON would go away and there shouldn’t be any after affects. (But the ON messed my eyesight pretty well in one eye and 8 months later, I have been told it won’t recover.)   In the meantime I waited patiently for the symptoms to go away. They never have. Most have lightened or I have learned to tolerate them, one major symptom (needles and pins) hasn’t been around very much. But in the same sentence, I have gained NEW ones.   And my cognitive abilities seem to be slipping steadily as is some of my motor skills. Both were there at the onset and have never left. I used to carry a fold up cane with me, just in case. Now I use it almost everyday. When I do walk, even with a cane, say all day with the grandchildren, the pain and cramps in my legs at night overwhelm me and no med touches it. (I am glad I have a desk job in my own office, and don’t have to walk much) Between my not so hot vision, my legs, and cognitive problems…..getting vertigo is pretty simple . Its not that I am incapacitated, can't walk, can't speak, can't drive or have pain and symptoms that would equal getting hit by a truck....all the time. But the degrees of pain and symptoms change by the minute sometimes, and just plain wear you out, siphons your soul.   And of coarse the good old exhaustion and depression. The anti depression meds do allow me to maintain through all of this…..And I am grateful. But even they can’t suppress the urge to “snap” at people, or simple cry for no reason….it still happens, just not frequently   And exhaustion.   I do ok until around 11am getting up around 6am to get to work. After that I am pumping Provigil. And when I get home, I struggle to stay up until 8pm and just can’t deal anymore. Mondays are usually ok if I sleep the entire weekend but by Friday... I can barely deal with anything or anyone. I am so exhausted that go straight to bed when I get home. It is kind of sweet, my wife of 30 years plus, comes in, kisses my forehead, tells me she loves me, lets my dog in the room which jumps on my bed, and lays on my chest looking into my eyes, waiting to make sure I am alright. If I am lucky, I will sleep until noon or better the next day.   I feel crappy every day of my life, no good days or even better days. It is getting harder and harder to accomplish anything at work, and I love my job. These days the only time I feel better is when I am asleep (and I have to take sleeping pills every night) or on a Sat... getting up late, feet up on the couch, and reading or watching TV. I doze in and out and pretty much the weekend is a wash.   I try to get the lawn mowed, rake the leaves, weather proof the house for the upcoming snow…..but the consequences of doing these things is now obvious to me, and although I have do these things, I know I will pay a heavy price later.   I had an allergy reaction to Rebif, and having troubles with Copaxone…primarily that I   just can’t inject anymore. I don’t know why, something in my head. LOL. (not meant to be funny) I am investigating the low dosage.   I read what you said to Sandy the nurse. Absolutely wonderful…..”ramblings of an old lady” my foot.   It was insightful and full of truths.   But uppity, is this the best I will EVER feel? Does everyone feel so crappy everyday or does it indicate something else. The above goes on everyday (and more) and has for the last year. Do I feel this way because I am getting worse, maybe at the a different stage, or this is RR and worse things are coming?   I know that you finally left work and are in a wheelchair (if my mind still works part time) So you must have traveled the road.   It is hard for me to digest that 500,000 people in the US alone, feel like I do every day. And it never quits beating you up. And if this is what I have to put up with everyday, my next excerbation should pretty much take me out. The last one (the only one so far) was horrible, even for me.   Don’t tell me to talk to my doctors. Although I love my doctors and have a great relationship with them, they do not have MS.   Others, feel free to jump in, but I am more interested in hearing what normal day feels like for a person with MS and how you know when you are getting worse. What real time criteria moved you from RR to SP for instance. Who said you were now disabled, needed a handicap sticker, stop driving, get a wheelchair.   And I am very interested in hearing from people that were 56 or older when they got MS. How are you now?   And, not being rude, but the last thing I would like to hear is that someone, who has been officially DX’d has had no symptoms for years and what their daily world is like. Because mine is as far away from that as Earth and Saturn.   Uppity, nothing has ever broke me. Not combat, not climbing the ladder, not physical injuries, nothing.....but it seems that MS is trying very hard and is chipping away very successfully. I know that you cannot answer all the things, because of the nature of the beast...no one really could. So don't get hung up with "I'm sorry's"    and I thought the DX and doctor part of this game was tough..........it doesn't hold a candle to this frustration.   PS. Rhonda, I am sure there is a limit on words. Sorry this is a book. But it needed everything to have others know where I am and especially Uppity.
Posted 11/16/2006 8:31 PM (GMT 0)
Snowdog,

I hope you don't mind me jumping in here....I was in tears by the time I finished reading your post.  I, too, have been struggling with this "MS" thing.  That's one reason I haven't been posting much, I just am so upset with this disease I can't bare to read about it.  I'm frustrated with my doctors not being able to treat my nausea and constipation, just throwing their hands up and saying for me to find the right "combination" of meds, and not saying it with any kind of empathy!

 

As a man, I'm sure your thoughts and feelings are different than mine, you have the weight of being the bread winner, the shoulders of the family etc...I'm so sorry you or any of us are going thru all of this.

 

I'm trying to come to the conclusion that life goes on whether we want it to or not, we have to make the best of everyday, cry when we feel it neccessary, scream when we feel it neccessary, and be thankful it's not worst than it is.

 

We are all in this together and we need to lift each other up and be there for it all.  Thank you for your honesty, I really needed to read that I'm not alone.  God Bless you and your family, you will remain in my prayers.

Posted 11/16/2006 10:32 PM (GMT 0)
Michelle,

Sorry for the novel. Thanks for the words. None of us are alone, but we sure feel that way often more than not.

I guess for me, I am kind of detailed and analytical (therefore the long post) But I can't get a handle on this
and it.......along with it's symptoms and wierdness....is consuming me. I guess, I need to know where I am
in the world of MS. You study and research and ask questions of everyone and anything about this disease,
trying to figure out if you are normal, or what is next, or is this it? You learn about excerbations, Flairs, needles
bad neuros and good neuros, you spend thousands of dollars, and countless symptoms. "Yes I have this, no I don't have that"
You read that some people never feel terrible again....for years and years. That it somehow goes away. But for me and
lots of people, it doesn't. Are we just unlucky or are they liars.

I used to love my job, now I watch the clock in my office, waiting, waiting.......what am I waiting for.....to see my kids and wife,
to go golfing with my friends, to play with grandkids, to catch a game on TV.........no.....I waiting to get home..get something in my
stomach and go to bed, so I can try and make it again tomorrow.

And the real bummer? Nobody seems to be sure how we are suppose to feel.......much less us. And for me, that barely gets a cold
every 5-6 years, being sick for a year........feeling unhappy for year, not because I choose to, but because something in my head
won't let me feel like I used to, and a body that challanges me everyday to how much pain, discomfort and messed up senses I can take.

Maybe I am just crazy Michelle. Thanks for the warmth.

I don't know whether to sell my house because it has stairs all over the place and its getting harder to get around,
or this is as bad as it will get and I should be able to adapt with a cane.
Posted 11/16/2006 10:56 PM (GMT 0)
Snowdog, I've been away all day and don't have time to really give you any sort of response right now...

but I wanted you to know that I have read your post, as Clinton said, "feel your pain", and you deserve a much more thoughtful response than I can give right now. Hang in there. I WILL read your message more thoroughly, and respond more thoughtfully. I just can't do it right now....
Posted 11/16/2006 11:43 PM (GMT 0)
Snowdog,

Have you thought about going on disability?  I know it can be a long and horrid process but it was neccessary in my case. 

 

My neuro (who is an ms specialist) tells me, when I give him the long list of my symptom weirdness etc...."Well, you DO have ms"!  He says it is an unpredictable, weird disease and the docs don't know who will get worst, nor do they know which symptoms are permanent etc...

 

I'm hoping your symptoms level off soon.  Have you considered Tysabri?  It will be my next step.  Novantrone really helped a friend of mine with the rarest form of ms (progressive relapsing), she is on Tysabri now.  She was in a wheelchair for over a year and while on the novantrone and avonex combo, she is no longer in a wheelchair.  She is very excited about the tysabri as it is nearly side effect free and holds great promise.

 

You are definately NOT crazy, you are an individual and you are dealing (or not dealing) with this stuff as only you can.  Perhaps a counselor could help you with coming to terms and coping, it can't hurt.  I have begun counseling recently, my marriage has been effected by this all onsuming disease and it creeps into the depths of all of my being.  I want my hubby and family and I'm trying to work through it all.

 

Big hugs...I wish there was more I could say.

Posted 11/16/2006 11:53 PM (GMT 0)
I'm not sure how coherent this will be, as I am going to be jumping back and forth between your post and my reply....

I think when you get on the internet and read forum of people who have MS, you need to remember this:  most often you'll find those folks whose MS is more disabling. Perhaps they've had serious exacerbations early on, or have had it for a long time.  The folks who have an exacerbation...and then recover completely (or nearly completely), are going about their business without complications, and don't spend time on the internet on medical-related forums.

I've had MS since 1983.  I was 35 at the time it was diagnosed....but it became evident, after taking time to thoroughly trace my medical history, that it was likely I'd had MS since 1969 or so -- when I was 21, newly married, and having physical problems, which I attributed to: being fat, being stressed, being clumsy, being out of shape...and didn't have medical insurance anyway, so didn't pursue the

times when I would fall down unexpectedly, or not be able to walk on a gravel path without twisting or spraining an ankle, or peeing in my pants and attributing it to an over-active sex life (I was newly married...), or...any number of other symptoms of MS which I didn't know was MS at the time .. but if I had, I'd have been one of those folks who assumed I had a mild and transitory version of MS, and wouldn't have done much about it except what I did do: go about my life, working as a librarian, a teacher, then a disabilities consultant.  I was probably what they'd call "relapsing-remitting" -- I'd have a "spell" where I was particularly clumsy, or fell down and seriously injured myself (by the time I was diagnosed I managed to break an ankle, both knees, seriously bruise one elbow, break the other ...all at different times...), and then I'd be fine for months, even years -- 14 years between some early episodes and when I was then diagnosed...

It wasn't until my first major and quite debilitating exacerbation -- which paralyzed me from mid-torso to toes, lost vision in one eye, lost color vision in the other, loss of control of bowels and bladder, etc.... that the MS really had an impact on my life. It was right prior to this exacerbation that the MS was diagnosed...and then the exacerbation, which confirmed it :-)  .

From that exacerbation forward, I have always had symptoms that have never gone away. I have experienced numbness and tingling from torso to toes; I have had bladder incontinence (now controlled by medicines); I have very poor balance (I tip over even when sitting unless I'm in a chair with arms); I have had weakness in my legs. 

The leg weakness -- when I was in the hospital I was totally unable to move my legs. They would not support me to stand on them. I had no sense of my left side (there was some thought that I might have had a stroke, but that was ruled out).  I was released from the hospital after 3 months, and was in a wheelchair. Through physical therapy I learned to walk again, first with a walker, then two forearm crutches, then one forearm crutch, then a cane...but cycling back through all these mobility aides as I experienced 2-3 exacerbations a year. (Remember, this was long before any of the meds were available.) 

Then slowly, over time, my legs grew weaker, less able to support me.  I used the wheelchair more and more...and now all the other mobility aides are cluttering up my closet.  I should get rid of them one of these days...and start shopping for a scooter or power chair...

Working:  I don't know how old you are, and don't know what kinds of benefits you may have. But the fatigue that is part of MS -- the unrelenting debilitating fatigue that can suck the life out of you -- is the primary reason why many people stop working long before any other physical symptoms demand that of them.  It sounds like you're able to do some work from home. You may need to start thinking about how you can do more of that...or less work...or work in different ways, if you need to keep working because of the income issues.  I had to quit my job about a year after my first major exacerbation, because I could not any longer be a dependable employee.  This was long before things like the Family Medical Leave Act (which allows you to take time off..without pay...to tend to illness, if you've used up your sick leave), or disability insurance.  I simply could not drag myself out of bed each day, work an intense and demanding job, go home, crash into bed, and get up the next morning to do it all over again. And my job demanded I be on my feet -- and that was not possible. 

I quit my job, my husband quit his, we moved back home and were unemployed for a year while he was searching for work. He found a job, and I continued to recover -- took 5 years -- to a point where --

while I still experienced fatigue, bladder incontinence, numbness, tingling, weak legs, loss of balance....I felt well enough to do some independent consulting, become president of a big-city League of Women Voters chapter, chair an ethics committee for that big city, do some volunteer stuff for my church..

but yes, I dealt with all those symptoms. The good part of not working for pay is that I could rest when I had to, nap in the afternoon, sometimes call up people and tell them I couldn't do what I'd promised...tough, for me...

Today -- I deal with fatigue. I get up at 6 a.m., but am in bed by 8 p.m., pretending to watch TV, but generally sleeping.  I do better if I get a chance in the afternoon to lie down for an hour or so.  I do some work by internet and phone, and occasionally a consulting job, but pay for it for the next several days, completely exhausted.  I'm still numb from torso to toes, tingling and spastic legs and thighs, and occasionally cramping hands. I've lost much of my "fine motor skills", meaning I can't grasp narrow things like pens, and have to watch to be sure I'm grasping a cup of coffee.  I get esophageal spasms (see the other thread). I have bladder control issues, and occasional bowel control issues. And yes, I use a wheelchair full time.  I'm not able to do much more than transfer from chair to bed, or chair to toilet, or stand to grab a can off a shelf.

I rely on SSDI, my husband's retirement income, he now is on social security, some investments that we inherited, which I manage to re-invest as much as possible. We pay dearly for group health insurance from his work (he is now retired), primarily because it will pay for hospitalization (which social security won't pay for).

And yes, I do stuff...a lot of stuff...knowing that I'll pay for it the next day. Like today -- my husband and I drove to the next big town (we live in rural Wisconsin) where we shopped in several stores, had lunch, did some more shopping, got groceries, some other errands...and now we're home. And I was supposed to go out to eat with him tonight. I just sent him off by himself, as I am wiped flat -- it's only 6 p.m. here -- and when I finish this, I'll be in bed.

When I do my contract work, I'll be in front of people for the day, get back to my hotel room, and crash in to bed, often without eating, as it's just too much of a chore to even raid the snack machines. 

The fatigue, compounded by all the other symptoms..oh yes, and the tinnitus (ringing in the ears) which is relentless, and the occasional shooting pains up the side of my face and the back spasms and shoulder cramping...all can wear a girl down.

I'm 59, by the way.  Some days I feel a good 20 years older.  And yes, I'm often grumpy (don't break into tears, though...only did that while going through menopause) and the grumpiness is exacerbated by the fatigue...which is why I sent my husband off tonight by himself. Hanging around me right now wouldn't do either of us much good.  We've been married 38 years; I wonder why he continues to put up with all this ..uh...carp.

But there it is.  Let's see if MY long tome will make the list!  :)

Feel free to ask questions back.  If I can be helpful, I'll try.

 

Posted 11/17/2006 12:10 AM (GMT 0)

Oh. You asked about labels.  I did experience a number of years early on when I moved from exacerbation to periods of relative calm to exacerbation to calm...each exacerbation bringing more and more disability.  And the periods of calm -- I still had ALL the symptoms that I had prior to the exacerbation..and more...but they weren't as intense, some of them just were "hanging out" in the background", and I was able to deal with them.

By the time I started on Betaseron, about 13 years ago, I was still experiencing exacerbations...but the symptoms weren't lessening in between at all....for example, I'd get a period of time where I had NO use of my legs...and then slowly be able to stand, and walk again..with great difficulty. 

Since I have been on Betaseron, I've been relatively level -- no new exacerbations, no new symptoms.  "Old" symptoms haven't worsened, with the exception of my legs, which have grown weaker, to the point now that I can no longer walk.  My doctor tells me I'm "secondary-progressive" - -and was, at the time I started on Betaseron,

but the reality is..there isn't much difference.  I deal with what I have to deal with, to get about my day.  I wake up in the morning and know that I'd better be  extracting my legs (they spasm badly in the morning when I first wake up and try to move them) and get into my wheelchair and into the bathroom, or I'll pee the bed.  So I do that.  Pop an oxybutanin, and a couple of ibuprofen.  I roll back into bed for awhile, and my doting husband brings me coffee.  3 or 4 cats (I am owned by 4) tumble back into bed with me for awhile.  After the ibu "kicks in" (about 20 minutes to a half hour) and the caffiene has done it's thing, I'm ready to roll out of bed. I get up, get dressed, hit the computer, start my day.  If I've "shot up" the Betaseron the night before, I might be a bit slower getting out of bed.  I usually shower later in the afteroon, when I'm fully awake, able to be more careful and conscious of my balance issues. I have a roll-in shower that we installed in a bathroom, with lots of grab bars and a bath seat. I can roll in, transfer to the bath seat, pull the shower curtain around me, and shower. We also installed high-rise toilets in both bathrooms, with grab bars.

We did put in the handicap accessible shower, and an elevator to the basement so I can do laundry. And a ramp to the front door. Other than that, the house we live in is a standard ranch-style house.

I decided I needed a handicap sticker for my car and asked my doctor, who was surprised I hadn't had one a lot sooner.  I still drive a regular car (no hand controls), but it does have power steering and brakes, and cruise control.  My state requires me to take a behind-the-wheel driving test every time I renew my license (thankfully only every 8 years!). They'll be the ones to tell me I can't drive, I think...although I have stopped driving at times when I've realized I can't move my foot from gas to brake fast enough.  And I've stopped driving at night, pretty much -- but that's probably more an issue of age than MS.

You're right, though -- when you get my age (59), sorting what is "old age" and what is MS can be a challenge.

I just look at things this way: If I wake up in the morning and am still alive...it's a GOOD day.  And then go from there.  Simplistic, perhaps, but that's the way it is.  I don't "do God", don't pray, don't do a lot of meds (only oxybutanin, Betaseron, and ibuprofen), don't do alternative meds, don't bother a neuro (my family doctor takes care of any medical needs, even those relating to MS), try to not bug my husband too much, and try to be helpful to others when I can.  And sometimes get stomped for it. 

But there it is. Probably more than you wanted to know.  Hang in there.  I always figure, "yeah, having MS is horrible...but when you consider the alternative....."  :)

Posted 11/17/2006 4:12 AM (GMT 0)

..."I used to love my job, now I watch the clock in my office, waiting, waiting.......what am I waiting for.....to see my kids and wife,
to go golfing with my friends, to play with grandkids, to catch a game on TV.........no.....I waiting to get home..get something in my
stomach and go to bed, so I can try and make it again tomorrow"...

Hi Snowdog... thought I would throw my 2 cents in here.... in my opinion you are working way too much.  I am also learning this the hard way.  If all you have energy for is getting through work, you can have no quality of life at home.  I have been continually cutting back my hours at work trying to find the right balance.  When I overdo it, every single symptom feels worse.  After I was told to take a week off, I felt 60% better.  Now that I am back at work, it's worse again.  Everyone keeps telling me "listen to your body".  Now that I am, it is clearly telling me to take more time off, and rest. yeah I sit at a computer all day and thought "what can be so tiring about that?" ... well mental exertion is what is so tiring and affects everything else.  Your health has to come first....

Shar

 

 

Posted 11/17/2006 1:37 PM (GMT 0)
I did forget to mention that I went back to work from around 1990 - 1994/1995, the job I refer to, from time to time -- driving a circuit between 7 cities here in my home state, visiting offices, doing consulting work. This was full time..but in between the driving trips there was time at home, on the phone or in front of the computer, then a week travel, then home again. I quit the job not because of MS issues but because of other employee/employer issues, unrelated to MS... I still do some consulting now, but not for pay, and entirely on my own schedule...
Posted 11/17/2006 11:40 PM (GMT 0)
Uppity,

You probably don't know how wonderful you are. Not just because you have been through so much, but because you take the time to
answer an over writen letter from another MS soul that is exactly your age. I needed to hear about the real world. It makes things more vivid.
I wasn't prepared for MS. Who is, I guess. I always have turned down my companies disability, extended medical and even regular medical insurance.
I had made it almost to sixty with a few broken this and that, battle scars, and case of scarlet fever and pneumonia when I was a kid. My wife is a career girl, and a wonderful wife and mother. I have always been on her Medical Insurance. It was cheaper. Since we were college sweethearts, we are the same age, and last year started putting our retirement plans together. We were both continuing to work because we wanted that extra cushion. But
last Valentines I told her I wanted her to quit. It was time for her to stay home again. Then I got sick. Needless to say, I have trapped her in her job because I will not be able to get insurance at my company now. And as you, know, the medical bills do pile up.

At our age, I wanted time. What it does to me when I am 75, I don't care. Now I don't know where I will be in 2,3 or 5 years. It has been almost a year with little or no relief. Canceled dinner reservations, one movie in a year, suspended family events...all because of me and the exhaustion or symptoms. I know with this wacky disease that tomorrow I could feel great, but the logical part of me says, "buddy...your not any better and you are worse in some area's and the new symptoms suck.....do you really think it is going to give you a break?" Pessimistic, you bet. It is hard to optimistic. I served my country, I climbed the ladder, I married my college sweetheart, I have 5 great kids. MS isn't suppose to hit 59 year olds. I guess I am full of self pity and pissed off as hell.

Shar and Michele, thank you so much for adding your 2 cents. I could work at home, if the company would let me, but they won't. They have been VERY
supportive and tolerant, but they have no program for home work. Disability is something I cannot think of. At least not at this time in my life.

"After I was told to take a week off, I felt 60% better. Now that I am back at work, it's worse again" For awhile I was taking 4 day weekends every 4-5 weeks which showed me how amazing it was phyically, and mentally, to have that kind of rest. I can no longer do that, luckily the holidays are coming and it is just about 4 weeks between them. But then, its the holidays....running around, christmas stress, family events, church events, etc.
Christmas was my favorite time of the year, and I know from experience that this time around it will not be one that I will cherish.

I guess I shouldn't be such a pig. I look at what uppity wrote and realize what she has gone through. I am not in a wheelchair, not totally blind, and I can still walk, carefully. But with all that, and trying desperately to tough it out, to hang in there, it is wearing me down badly.

Well, enough blah blah blah. My thanks again to uppity from the bottom of my heart, and to Shar and Michele.
Posted 11/18/2006 3:09 AM (GMT 0)
One of the Beatles said this...maybe John?...."Life happens when you're makin' other plans..."

I think everyone plots out his life...gonna get married, have kids, dog, cat, picket fence, all that...

and then somethin' happens.  Hit by a truck. House burn down. Flood happens.  Or disease strikes. NOBODY plans for that sort of thing.

And all I can do is ...deal with it.  We've been married 38 years.  Didn't have kids because, just when we thought maybe we could afford to, MS happened.  And our first house burned down, the second house we owned flooded out....twice...before we could sell it.  We're in this house now.  I called my brother, a minister, and asked, "OK, first house burned, second house flooded, what's next?"  And his response was, "...watch out for locusts...."  :)

Point is:  You CAN'T plan.  And you can't sit around grousing because plans you made won't come to pass, now.  All you can do is live each day that you have in front of you.  You "trapped your wife in her job".  Does she WANT to work?  Does she MIND that in fact she has to work because she is now the sole provider (and provider of health insurance)...or is it a matter of... "...for better or for worse, in SICKNESS and in health..."...she knows that **it's not your fault that you're sick*** so she'll do what she has to do..for what...the next couple of years, until she's 62 and eligible for Medicare?  You might be eligible for SSDI yourself...not a lot of money, to be sure...but maybe enough to bridge the gap between now and when YOU'RE 62, and eligible for Medicare (which would be the same amount as you'll get on SSDI).

None of us want to be sick.  But there it is.  ***And it's not our fault***.  I hear SO many folks sittin' around upset with themselves because they got sick...as if there was anything we did to get MS.  And no, we don't "deserve" MS, either.  (There's a whole host of reasons why I don't believe in God.  The whole idea that somehow he is "punishing me" by giving me MS is on the list of reasons...)  You didn't do ANYTHING to "deserve" getting MS.  It just is.  And so you need to figure out how to live around it.

You  have 5 kids.  Can you hire one of them to cut the grass, so you can continue to prop up your feet on Sunday?  Can you get one of them to help with other chores that you feel obligated to do, to free up your sense of guilt and responsibility?  If not one of the kids, then maybe a grandkid?

Where will you be in 2,5, 10 years?  Who knows.  I wondered about that when, at 35, I was hit with a diagnose.  I thought I'd be dead.  The only medical book I could find told me so.  But here I am, 23 YEARS LATER, still kickin'.  Sure my life is QUITE different than what I planned..and dreamed about.  And my husband's life is surely different than what HE dreamed about.  But we've hung in there, 38 years now, and are still kickin'.  No, it hasn't been easy. Been dam tough, sometimes.  But there it is.

Anyway.  You sound tough, and strong...and not beaten down yet.  Give yourself time, and don't apologize, either for your anger, or your despair.  You deserve both.  But then, pick yourself up and move on.  Life's too short to let even one day pass without enjoying the very fact that you're ALIVE.  Give your wife a hug, give your grands a hug, and move on.

Take care.

Posted 11/18/2006 6:18 PM (GMT 0)

Saturday noonVIEW IMAGE

Hello Everyone...

Thanks Uppity....I have heard that saying before, but cannot take credit for it here...

Snowdog....just take a deep breadth my friend.  Then take another one. 

I was dx'ed at 30 years old..19 years ago....and I had heard that 30 was the "correct"age to be dx'ed.  Old enough to be mature enough to understand things, but not too old to feel like this is so unfair to me as I get close to retirement age....

We have all been crapped on by being MS patients.

But...I know, from my perspective, it is just how you deal with the cards that have been dealt to us....

I don't know...seems like you have some pretty good things goin' on in your life....loving wife, loving kids and grandkids...even a dog who loves you...

I have been on SS Disability for @5 years.  I REALLY miss working....but I cannot anymore....

Heck, isn't worth $20.00 to pay some kid to cut your grass and shovel the show?  Things have just changed for all of us...It kills me that my wife has to take out the garbage every week................

I'm sure you miss playing with grandkids outdoors...

But that will not  change the  amount of love they have for you...

Have you checked with your state MS Society (or National  MS Socety) , because they have publications regarding issues you have brought up...

And I use a wheeled walker...and sometimes need a wheelchair...just as it is...once I got over the male ego about using such aids, things were o much easier.  I view the use of such aids as a badge of courage.

Very good luck to you....I agree with the disability

idea...I know (we all do) about the fatiug yeah   thing.

But as much as we have all been crapped on, life is great

Great luck.  John

Comments anyone?

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Posted 11/18/2006 9:24 PM (GMT 0)

I also am 59, been married 38 years and in about the same boat snodog is in

Reading these posts has helped me alot.  Uppidty is a fountain of information.  I have some physical issues, arms ache to hold up , balance is off, drag right foot, many others, but none real major.  My real problem is cognitive. I may have to leave work because of it.  Life sure is interesting isn't it?  I guess I just wanted to say thanks to all who post here and ehlp us understand life a little more.                Linda

Posted 11/18/2006 11:38 PM (GMT 0)
Hi everyone,

 

   I agree with Linda, reading all these posts really helps in understanding how MS affects people. 

 

   I wish that in some way we could choose what happens to us in life and none of you had to deal with this dreaded illness.  If anything MS has made our family much closer and our children more compassionate people. 

 

    My husband was diagnosed with PPMS six years ago, and six months prior to that he had to quit working because of pain and mobility issues, not to mention the fatigue.  We didn't even know it was MS at the time, he progressed so slowly that it wasn't until his mobility became so bad that they figured out what it was. 

 

    He used a cane at first, then a walker, and now uses a powerchair.  We live in a ranch style home and made some rennovations to accommodate his "wheels" as he calls it.  He hates the fact that he can't do much to help me, and that he can't interact with his children like he used to.  We've both learned though, through all of this, that it's the small things in life that matter the most.

   

 

Kimber

 

    

Posted 11/19/2006 9:29 PM (GMT 0)
Snowdog: Have you tried physical therapy? I was about to hit a man over the head w/my cane for crunching candy very loudly in the library, when I started my PT. It's a Godsend! My balance has improved to the point I don't have to use my cane, the weakness in my left leg is less (only slightly but every little bit counts), and the therapy seems to let me use it as my stress relief when nothing else helped. I am switching to the cardiac chat room as last wk I was diagnosed w/coronary artery disease. You could have knocked me over w/feather. Haven't been able to go to PT for a wk & miss it tremendously! The therapists are great & encourage even the fact when I can stoop down and pick up a ball. Who would have thought that such a simple task could mean so much to a person. Good luck to you and God bless!
Posted 11/20/2006 2:42 AM (GMT 0)
Sunday p.m.

 

Hello everyone:

 

..Great thread....John tongue

Posted 11/20/2006 5:19 PM (GMT 0)
Wow...... I am speechless.

We all see on the forums, of people asking about symptoms, or do I have MS, or Neuro's that don't know how to tie shoes much less DX MS.
We read about different pains and discomforts, we try to research MRI's, Meds, and LP's. But to read, as Uppity has shared, a day as personal as it can get............gave me a new prospective. I still am pessimistic. I still am in denial. Uppty and all the other support, didn't make me feel better. but it wasn't what I was looking for anyway. After a year with this disease, and all the research, all the doctors appts. all the talk......I still didn't know what
it is really like for anyone but me, with MS. Doctors have no idea what we go through every day. And it is EVERY DAY. Some of our Brothers and Sisters that have this disease, are so....o...o...o lucky. It hits and then crawls in a hole for years or forever. Still they have it, and it is not gone....but
there lives are considerably more different than Uppity, or even me. The latitude that this disease has, in regards to who will feel nothing much, to
putting others in a wheelchair, is not one that is easily accepted.

Again, I appreciate your thoughts and remarks. I am blessed and have never taken that for granted. Just one of the frustrations that has come out of this, is that I can no longer serve the youth of my community which I have been doing for 25 years now. I just no longer have the strength, the stability, stamina, nor can I keep up with them mentally. My way of relaxing has always been reading a book. some TV, and playing my guitar. I cannot play my guitar anymore, because my left hand doesn't want to do what I want, when I want. even though I work on it everyday and do my old warm up drills. Perhaps it has arthritis or something else in it also causing the problem, but to me it is the MS and I am mad. I have a horrible time watching TV or reading because of the damage to my left eye (ON) and the doctors have done all they can do. I was given the ability and skills to sing reasonably well. But now I am finding that my voice does some wierd things.....probably because of my age, but I am suspious of anything that has happend in the last year.

I have asked about Physical Therapy. I think that is coming up most likely after Christmas. I want to build up my body...perhaps not as it was
last year, but I am losing muscle mass by doing nothing and I understand that I need to keep in shape as much as I can, to help hold me up etc. But
I must say, that I feel so exhausted, so weak, and so foggy.....it just hasn't been an option yet. I just get my head into that game...yet.

Yes I do have 5 wonderful kids. However, they are all out of house. Two live in other states, one leaves in a city 300 miles from our home in the same state and the other lives on campus. Our neighborhood is much like my family, they are mostly in their late 50's and early sixties and empty nesters.
I did have a landscape business, cut my lawn this summer. So I am not all together helpless. (But they don't do it my way, to my standards) and I am one of these guys that just likes to do things myself.

I am trying to realize that my life is changing. I would have had to do this as I grow older too. But my doctors have always said (up until now) that
my mind was that of a 35 year old or less and my body, was that of a 40 year old. I wasn't planning on hitting my 60's until I was 75. Remember I though I was superman.

But more important than all that, is that I am trying to come to terms to just what MS is. We all know about the symtpoms, the pain, the meds, the issues, excerbations, flairs, how it works and what it does to our CNS, and many know more about this disease than some doctors I know. We talk about these things endlessly........but what is it like to deal with it everyday.

I am not stupid enough to think that I am the only one that feels this disease every day, and I realize their are others that are worse.....that's why I asked Uppity what I did. Over this year I have heard her mention, her condition.

Linda...your uppity's and my age, and I appreciated your comment: "My real problem is cognitive. I may have to leave work because of it." This is affecting me greatly right now. At our age it is so hard to figure what is the start of old age and what is MS. And I have yet to find a ton of research
or papers, or thoughts on how moving into your late 50's, 60's and 70's affects MS. Does it accerate it, does it slow it down, does it affect the motor skills more than when you have it at 35? Do exerbations last longer or shorter. Etc. I did come across one article that claims getting MS in your late 50's puts you in a secondary RR almost immeadiately, especially if you had motor problems with the onset. But that is all I have been able to find.


I was looking for that part of the jigsaw puzzel, understanding of coarse, that his disease is different for all of us. I appreciated Johns comment:
"...just as it is...once I got over the male ego about using such aids, things were o much easier. I view the use of such aids as a badge of courage."

for this has got to be a big part of how lots of guys feel. I know that I am one of them where my ego is in the way.

But the important part of this for me, is hearing from people of my age, hearing from people of all ages and their everyday world, and finally......
continuing to try to put the puzzel together for my future. For I have planned that future all my life, and at this stage of my life, I don't think
I can take it a day a time. You can't sell a house or find the appropiate one in a day, that will accomidate those things you may have to have live with.

If how I am now is what it is going to be the rest of my life, I must find a better way to deal with it, but knowing this I can.

I want to stop being consumed by this thing that has attacked me, but cannot until I understand if what I am feeling is MS, if I can expect more to happen and a guess to when, and based on all of that....set some kind of action in motion to deal with it. I told you that I am logical, which is hard because we deal with an illogical disease.

Uppity...........thanks again girl. I love your honesty and straight forwardness.

I am blessed, I have worked hard, and I understand truely, what others
have been through. I understand that I have more than the lady I heard from that is all by herself fighting this thing. But it does not stop me from having those "unfair" days, especially when I look into my wifes eyes. I would not be where I am today, without her strength. We have had our share of ups and downs during the years.... including her having cancer and losing a son . But you figure that there is always a light at the end of the tunnel....a way to make things better or cure things if you have the persistence to endure.....but there is no cure for MS....no light yet. Maybe pills next year for some instead of shots. But in this case, time may be against me instead of my way out........so I am struggling.

"...watch out for locusts...." is where I am now. If my wife should have a stroke, or the cancer came back, would I be able to take care of her. I have always waited to cross bridges until it was time to do so..........I don't think I have the option, or I don't see that as an option at almost 60.

So, that being said......I will continue going down the road (no choice there eh?) Asking questions, researching and being consumed with this mess.
Helping other people when I can, making statements that I think make sense, and probing minds like Uppity and the wonderful participants on this forum
as well as my doctors and any one else that can finally get me to the point that I will admit.......I have MS, this is what is probably going to happen and why, and this is what action I intend to take because of that information. Until then......

I will be a little centimential and say how much I love my brothers and sisters with MS, and the deep concern they show for others struggling.

Thank you.

Snowdog
Posted 11/20/2006 11:39 PM (GMT 0)
Hey Snowdog

I'm sorry to be so late jumping in here..and hope it's ok too. I've read all thru all the posts and see so much pain in u'rs and many others as well. There is no way to say 'don't worry, it'll be ok" or 'hang on...give it time". That's just not the nature of ms. I can't totally relate to u'r situation just because i'm not dx'd nor do i have the extent of probs that many others here have. I CAN tell u, tho, that i'm truely sorry for the hurt ms causes. We all have seen our lives changed and some aren't seeing the normalcy they used to have return. For many of us, normal has a new definition and one that is ever evolving/changing. We'll never again see the days when we can wake up and our only concern is what we'll do for fun that day, what we'll eat, what we'll wear. Now our concern is IF we'll feel various parts of our bodies, IF we'll be in pain in those various parts, IF we'll be able to pull off the 'cover up' to our kids for that day or IF we even have ms or some other unknown. I'm a mother. I've always been the one who was the cool mom. The one who had the parties that everyone came to. The one that all the teens in my community came to see and hung out with..instead of being busy looking for something to do and possibly getting into trouble. My kids say they want me to be cool again. They liked me goofing off with them and their friends. They liked me taking them places and not giving out halfway thru. They want their mom back, but that's not fully an option. To a point i am just as i always have been, but no parties anymore. I can't stay up with it anymore. I give out before we're done shopping. I lay in my recliner some days all day. Some days they come home to no supper. My husband has to bring supper in very often. No, i'm not nearly as affected as many here, but if my degree of prob is any indication of how things will progress, i'm scared. My family doesn't really understand yet and without a 'name' to what's going on, it's difficult to explain to them why i'm like this. The name doesn't change the prob, but helps to put a title and definition on this whole thing.

I'm with u on the youth thing too. I've been the one in my community/church (one in the same here) who set everything up. If it happened, it happened thru me. Not because i was the only one who could, but the only one who would and i've loved it! I love being with kids and have enjoyed it for a long time now. Since all this began for me, tho, it's much different. The kids try to understand and they are great, but they want to do things. We're in a pretty rural area, so the activities we've had have been all they've had for the most part. But i just can't do it anymore. It's pretty sad because i miss it much more than they do.

I see so many changes in myself since this all began. Things i used to take for granted are now a privilige at times. Memory is a great example. There are days i can't remember anything! Seriously, from one sentence to the next i'll be lost. Speech is another big prob for me. When i get tired it's worse...so are the other probs. I cant get the right word out or it's gonna be the right word but all messed up. I guess i could go on and on about this, but u get the pic i think.

I worry about my husband and children. My husband is the only one who works and what'll become of all he's working for?? Will he have to give it all up for me?? Will my girls have to continue to sacrifice for my well being? Isn't that what i'm supposed to be doing for them?? When my husband and i are old, will he be lonely and 'alone" even tho i'm right there?? It's awesome to consider the affect just one person in a family has on all the others in that family and how much they can pull down the rest. It's awesome to consider how one person can drag the others down so far so quickly and how an illness for which there is no cure can destroy all u'r plans. No, no option but to go thru all this as it comes, but we do worry about the future and how we'll manage. We have to. Can we really do anything about this?? NO. Can we really affect our own outcomes?? YES. It's in the day to day and the financial plans we set forth now...and hoping and praying that we've made the right decisions. Researching everything we can is great and we have to. It's our only rope..our only stronghold sometimes. It hurts to see it in black and white, but it'll hurt worse to be hit broad side with it later on. So we trudge on and we struggle together and we make it. Alone? Hardly. We have our families, but sometimes we need more. We need this community and the love and understanding we get here. The acceptance of our 'unseen' symptoms and the help with dealing with our very visible hurts.

rhonda

P.S. No prob with length of posts here, Snowdog. U did a great thing in posting this. U'r a wonderful part of this board and i'm very glad u do so much for everyone here. Thank u!
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