How Are You Doing?
 

So how is your dispicable, worm crawling, dodo eating, party pooping, snotty, smelly, creeping, crawly, carpy, cantakerous, ugly, obnoxous disease treating you these days?:mad::p:(:o

I'll tell you I am sick and dam tired of it, taking over my life, my fun, every move I make or thought I have. Not a good friend to have, even when we try to make the best of it. Like thread posts of "what do you not mind about MS".

Me? After raising a husband childen working and doing all the proper things thru 40 years of MS BS, I'm doing anything I really feel like doing and very little of what I don't.:D I'm only taking meds that actually make me feel better and no more of the ones big pharma want me on.:mad: No special diets for me, anymore...just everything in moderation (encluding the total:p)

So, how are you doing (insert biotching here)? And tell me, what are you doing or trying to do, to make your life happier?

Love you,

Sally

So, how are you doing (insert biotching here)? And tell me, what are you doing or trying to do, to make your life happier?

Hey Sally,

Right there with you on the frustration end of things; but keep going and doing we must...if only to maintain our sense of humanity toward ourselves and others. That does bring some happiness to me, but then again I still have a lot more function, independence and mobility than some others do.

Evenso, everyday it seems as if there is something else to contend with along with the usual challenges of pain, spasticity, cramps, numbness, vision loss etc. For heavens sake, it takes me 3-4 hours every morning just to get the body to the point where it is functional enough to leave the house or to do something meaningful.

How am I doing?
For the last few weeks I've been slowly bringing in the garden harvest and also working at my job part time. The body has not been very cooperative on most days but on others it is OK...just OK.
Most recently I've been experiencing a lot of numbness, and tingling in both hands and in the lower arms. The motor component is also caput when the numbness is in full swing and so gripping or using the fingers doesn't go very well.
This arrived on the heels of a bout of optic neuritis that was finally lifting a bit after over three weeks; so one or the other kept me from doing many things for the last six weeks or so. My dad came to help bring in the garden a couple of weekends ago and I was very grateful for the help because some of that work was impossible for me to do.

In answer to the question what am I doing to make my life happier, I would have to say that it is choosing to hold the most positive perception/attitude as possible. It seems to take just as much, if not more effort to hold a negative one, so I just choose to go with the positive one. 'De-nial' is more than a river in Africa :D.
I also meditate/contemplate a great deal so the worse things are, the more time I spend in meditation and/or doing yoga...at least as long as cognition is working and it has been since going on LDN :). I do enjoy meditation/contemplation as well as yoga and so that makes me happy too.

Well, it has taken over an hour to type this up (hands are acting up), but I wanted to give you a BIG cyber hug, ((((Sally)))) :hug:.
You hang in there OK? You have been a supportive strength as well as the voice of wisdom for me since I came onto this site a few months back; and I am sure that you are that for many others as well.

BTW, where is Dejibo? I've been checking in on NT to read posts from time to time (sorry but typing to post myself has been tough and painfully slow lately), but I haven't seen any from her in quite a while. Sure hope that everything is OK with her.

With love, Erika

ErIkA, Yeaaaa, so nice to hear from you. You are right on with the attitude thingy. Great advise that I shall follow. :hug:

So sorry that the monster has been attacking you lately but glad you are standing up to it and giving it a good smack. :D

I've been wondering about Dej too. I checked the last time she posted and maybe we were a little hard on her? I don't know but love her and sure hope she hurries back.

Thanks for posting and thanks for being you..:hug:

OOS.. I forgot to mention that, one of the things I do to make me happy is coming here and talking to you guys.:grouphug:

Noone else responding? Did I do sumfin wrong? :paperbag: :Hum: :Bawling:

Not at all Sally. :hug: I just can't muster the energy to do much of anything these days. I feel sapped. :(

Hi Sally...just got back from Green Bay, WI...travelled 2 1/2 hours in the dark last night to motel...woke up at crack-***** of dawn to shower, drink a load of ice tea & water...DH showered we trucked it 500 yards to Bellin Hospital (acckk, never been there...what a beautiful lobby!) to go to the basement level & have the dreaded, icky, nasty LP done.

If you are ever in the area...and have to have a medical procedure that you dread...these folks are SERIOUS about being nice, informative...and did I mention NICE to their patients.

LP was much easier this time (definitely not the torturous procedure I remember from childhood) & radiologist/anesthisiologist was very informative & listened when I said I have a high tolerance to locals (plus it ((shudders)) helps when you feel pain when the needle moves...).

Now, I am going to get off this bucket of bolts & go take a nap...since:

1. I can't remember what blood tests they took blood for...doc's office told me yesterday & patient advocate also told me after they drew it.

2. My DH & DD have both yelled at me to go lay down

3. oh...wait, there was sumptin' else...oh, well...

Have a good evening...will return later to see if anyone knows what those blood tests were...thinking Immunoglobins...but which ones...can't remember Ig or whatever...((rreally funny since I used to be a Phleb)) :D

Don't let it win...ENJOY something every day ... even if it's only when the cat farts & it makes you laugh or...yeah, that makes us laugh...or whatever. Don't let it rob you of joy, mirth, smiles....easier said then done?? Nahhhh....FLUFFERNUTTER....((see, you smiled, I know you did))

How am I doing? Bloody marvelous to be honest! Tysabri is really working so far...

But BOTH my cats got bitten by a Brown Snake and we are now up to our eyeballs in vet-debt!!

What would make me happier? If my application for heating/cooling rebate went through smoothly and the snakes disappeared.

Ah, Dear Sal Pal, so refreshing to read your posts...you stare this ugly disease right in the face and stick out your tongue:)

After several weeks of blissful remission, the spasticity in the legs is back with a vengance. The bladder is leaking-freaking leaking!-whenever it wants, which is new. The fatigue is starting in after mornings of activity. And the brain farts are getting longer and louder;)

I'm anxious so often I'm tempted to start taking the anti anxiety drugs the doc gave me for the spasms...but I don't like to medicate any more than I already do. So I try to keep calm, but when your brain's on fire, it's tough to find the water bucket to put it out. When you do find the bucket there's a hole in it...sigh...

Oh well...I am trying to look forward to the two grandbabies that are due early next year...lots of blankets to crochet, which is my therapy...

I hate this disease. Period. It's not like I have cancer, I know. But I still hate it...:mad:

OITD, bad bad snakes:mad:, poor poor kitties.:hug: Happy the TY is working for you.:)

Debbie, I hate this stupid disease too.:mad:
New soft cuddly new babies should help to make you happy. Twins?:hug::hug:

Well Sally, first of all :hug:

I'm not doing so well with these diseases. I'm so tired of all of it. Not only is my MS flaring up, but the meds I'm on cause dry mouth. So I have three teeth that will be pulled next Tuesday. :( Then there's the periodic paralysis that is also acting up.

I'm dropping things constantly and unexpectedly, bladder leaking is getting much worse, can't remember conversations to save my soul (I completely forget what I'm saying mid sentence as well), fatigue is out of control and my insurance wont cover the med my doctor wants to put me on, I have to go surrender my license because even the doctor says that at this point she doesn't see me driving again, I can't fill out paperwork at all (my poor hubby has to do it), numbness in personal places at very in-opportune times, breathing is getting worse, trigeminal neuralgia keeps getting worse, optic neuritis also keeps getting worse, nausea has been so bad I can't hardly eat. I just can't seem to win, every time I think I'm getting used to a new symptom another one pops up to make me miserable.

But my son is in kindergarten this year. We all got Halloween costumes for a total of $10. Actually the cost was all for my costume because both of the kids' costumes were hand me downs from cousins. I love having a big family! My kids are very good at helping me when I need it, I also keep getting compliments from so many people on how well my kids behave.
When I need to cry because I just can't take it anymore my husband holds me and lets me cry it out.

So I just saw something on facebook that really got me thinking. It says, "DON'T QUIT. You're already in pain. You already hurt. Get a reward from it." Not really sure I can get a reward from MS but..... Thanks for the vent session and sorry I haven't been here lately, haven't been feeling good.

Kristie

(((((Kristie))))) A big hug for you. I hope you all enjoy your halloween...BOOOOOO!!!:D

I don't really know how to word this because I don't mean it as an insult to all of you that have answered dear Sally our cheerleader. But after reading your posts it makes me feel wonderful. I don't have even half of what all of you guys have and am so grateful. I sometimes regret having my own little pity parties after reading who it could be like.

Hi Sal

Reasonably quiet on the Western Front for me. Sick of nose bleeds (low platelets) and having a tingling face, arms and legs (which I discovered - much to my relief is caused by Topamax the new med that I am on - no big deal just glad to know the cause).

For whatever reason, I seem to burst into tears at any time, given any contentious/sensitive issue, but apart from that, assuming that nobody ruffles my feathers all is good in my world.

Cheers

Lyn

((((Lyn)))), I was right there with you on the verge of tears, this morning, whilst cleaning old doggy's morning mess he leaves for me. I got up at 11:00 and just now 1:00 sitting down to my PC and breakfast.:Bawling:

In the old days, it would have taken me 30 mins tops. I sure do understand, the ruffled feathers bit too.:eek:

Be well stay steady, we need you around here..:circlelove:

Doydie, thanks for being honest and for being as well as you are.:hug:

Sally it makes me feel guilty at times when I read of the problems so many of you have. I guess it should make me get off the couch also. I need to loose 75 pounds and maybe I would have more energy

i didn't even want to reply to your post because my situation right at this minute is depressing.

my dr has been following my labs and my "slight renal impairment" has escalated to "stage 3 kidney disease". "stage 5 is renal dialysis". this is NOT related to my MS but to my diabetes. my diabetes oral meds have changed a few times and insulin is next. yikes i'm scared.

it's my own fault for ignoring my diet etc. my internal dialogue is doing a number in my head and the dying piece is looking sooner rather than later.

but, i went to my hosp's diabetes educator and will try to follow new guidelines. i had new labs drawn this am and see my pcp next wk. then i plan to see a nephrologist.

i'm not a quitter and want to at least stay in stage 3 as long as possible.
and, my friend isn't even here yet. now she's moving in Jan. she was supposed to be here 2 1/2 yrs ago now.

can you tell i'm a little down? whine....

:hug: Judy :hug:

Awwww Judy, I am so sorry you are dealing with this. Prayers for you my friend. I hope you feel better soon and your friend is there to comfort you.:hug:

Haven't posted in a while but, have been reading posts every couple weeks..I'm not doing worth a crap! No other way to put it...stress, stress..oh did I say more stress! All the family deaths...hubby have 3 major surgeries in last 1 1/2 years. I just want to crawl in a hole somewhere or go off in the woods like the indians used to do and die!

Hi KB. Welcome home..:hug: So sorry about all of your stress and DH's illness. It doesn't just rain, sometimes it pours. I'm praying that rainbow and a little peace reaches you soon.:)

Aww Judy-is this reversible with meds/diet? Prayers for you my dear-try to stay strong-we need ya!!:hug::hug:

I can't keep my mind from going 240...my DIL has hijacked all of the planning of DDs baby shower-which is probably a good thing because I couldn't organize my thoughts well at all...cog fog is back big time. Something else is possibly very bad for one of my children as well-can't disclose-but it has me tied up in knots.

I can't seem to handle any stressful issues again...my brain is back to its MS state, and I too want to go off on an ice floe:(

Went through hell last week with the whole side of my face aching like crazy all the way to the top of my skull like I never felt before in my life. Have had dizziness which sucks. Couldn't drive and had to be driven.

On a new assortment of dope for this and see how it goes.

Also had tingling and leg was randomly "jumping"

Guess my luck is ******* over and currently trying to find a ******* cure for this ********.

yah, it sucked, my worst of it so far. That skull pain was the worst....I was going crazy for about three days.

Also I think I'm getting some cognitive issues again as I was at the store the other day and trying to talk to the person there and really had to concentrate on what I was saying to the point she asked if I was ok.

it was embarrassing, but I didn't mention MS to her. Just said I was feeling tired.

:circlelove: ((((((EricP))))))) :circlelove:

Please feel better everyone and I mean in mind.

For a few months now I have been feeling much better. before that everything at once was going on in my body, I had to write on my list more than once a day sometimes now it is where I can keep up with the things that are happening.

I notice that my right index finger is bent at the top joint. when it happen I have no idea, it is crooked as can be. it don't hurt but all the others are straight so it can really be seen. still get sharp pains every now and again throughout my arms and hands and now I have pockets of fluid in the joints the last one I notice yesterday is in my elbow the left one but not the right one that I lean on all the time.

I just moved from Philadelphia PA to Clarkston Ga and I have stairs now to go up and down and the first few weeks were hell. I was just about crawling up and down. now my thighs, knees and heels hurt going up and down. my shoulders are killing me. the burning and aching pain have me crying sometimes. The twitching is not so bad and no tremors right now. the mornings that it does bother me makes it hard to drive if I have to go out but most days I stay in. I am really lazy and want to do nothing but lay in the bed all day and watch tv. I am back to not sleeping at night and now I am falling to sleep much later in the mornings like after 8am sometimes and I have not been waking up until after 3pm.

it hurts when I first get up to walk but I have not been falling yet. I go Monday to see my new Neuro for the first time and I know I will have to do everything all over again so I know I will be just letting his talking go in one ear and out the other until he catches up.

I know I am not as bad as a lot of you but when I was at my worst and I can remember that this feels so good right now.

So how is your dispicable, worm crawling, dodo eating, party pooping, snotty, smelly, creeping, crawly, carpy, cantakerous, ugly, obnoxous disease treating you these days?

Same old... I'm not particularly fond of MS. Pain has gotten a little worse and I now understand how difficult it can be to walk due to, I guess, the numbness. It's getting harder for me. Oh well. coming up on 25 years since my MS dx.

Just getting rid of a bad staph infection in my leg. 60 days on antibiotics!

Busy schedule coming up. T-giving in Michigan (MIL b-day), Caribbean cruise in mid-December for 25th wedding anniversary, Tennessee for x-mas (mother).

And I'll be starting a clinical trial for a drug to reduce MS related neuropathic pain...

Still working. We had a supply ship dock at the space station this morning and have a debris avoidance maneuver this afternoon. Then an EVA (space walk) tomorrow.

When the time comes, I'm gonna get a Quantum 6000Z with the optional high speed motor package and be just like Wheelchair Kamikazi!

Tom

When the time comes, I'm gonna get a Quantum 6000Z with the optional high speed motor package and be just like Wheelchair Kamikazi!



Tom. Start saving now! :rolleyes::D

My insurance covered about 1/3rd of chair cost, but I would not have a chair without tilt control. Buying a chair first time, well now I can look back and see what I didn't know. I really don't have pain or tingling. Just can't walk. MS is so weird. Cognitively seem OK for my age.

Tom, isn't my discription of MS right on? I mean it's not medical but.....:D

Sorry about your pain, hope that trial stuff works for you. Sounds like you have your Holidays and stuff all planned out. I loved the old days when my Mother, the queen, had it planned for all of us. All we had to do was show up, loaded with presents..:rolleyes::D

I hope ur feeling better soon.:hug:

I was a nervous wreck when Sandy was going thru NJ, NY because of DD living there. Then good news, they were fine and safe.

Now I get a call my DS and DDIL were in a vehicle accident. His SUV was
was rammed dead center by a teen driving a car, trying to get across the hwy. before my son got close to him DS had the right of way.

While trying to avoid contact DS's SUV wheel went off the straight of road, so when the teen hit him the SUV rolled over. My DDIL was thrown from vehicle, she has a broken ankle, servere contusion of her left shoulder, plus all other brusies. DS's face cut up in a few places, he is hurting but was so worried about his wife he refused treatment. He just had the ATV accident in May where he broke 6 ribs.

So right now my nerves are jumping around like beans and this is not helping the UGLY CREATURE THAT HAS TAKEN OVER MY BODY.

Jappy :mad::mad:

Aw Joyce that just sucks. Take dear sons dr. lic. away, before someone kills him.:eek::(

We never stop worrying about our children.:confused:

(((((Joyce))))):circlelove:

Nappy so sorry to hear of yr DS & DDIL's accident. Prayers for quick healing...

The bruises and sprains will heal.
Be grateful; as with all vehicle roll-overs, there is quite a potential for more serious injuries...or worse.

Prayers for a speedy and full recovery.

With love, Erika

good news,
my latest labs show almost normal kidney function. coming off the metformin has turned things around. my dr felt it was the metformin that was the culprit.

we're trying 1 more med combo before insulin. hope it works.
my BP is good. my wt is maintaining. no loss-no gain. guess that's something.

i hope anyone that is struggling will be doing better.

So how is your dispicable, worm crawling...
 

Buzzing and numbness in the hands ongoing...sure wish that the numbness would travel upward and relieve the stinker of a pressure headache that has been present for the last 4 days. Really giving consideration to sticking my head in the snow for a while to see if that helps...if only to relieve the feeling of the eyes trying to meet in the middle.

Otherwise, laughing at the oddest of things; probably due to fatigue as sleep seems to have become a passé concept.
Good thing that I'm home alone or someone might feel the need to drop a net over this body and deliver it to somewhere not so pleasant :eek:.

I'm fine..really. Just whining :D.

With love, Erika

Spasticity at all time high in back and legs. Can barely get out of bed or onto the toilet. When my husband was like this they took him to the hospital and he died. So I'm taking it easy as I can. I feel victory when I am able to actually stand up and reach for a box containing a supplement. I too lost another tooth on Thursday, maybe due to dry mouth and meds. But the spasticity was increasing before that, got worse yesterday and today.
A woman from church drove me to the dental surgeon, I was still able to walk in and out of the office at that time. I will have to go to vote on a walker as I did in 2008, just before my husband's final weeks. I want to vote for the local candidates and issues, will not vote on the national.
At least we have some entertainment on TV these days--starving and freezing people on Staten Island to watch. Reality TV.

I hear your whine, Erika..:hug::hug:

I hope your spasticity finds relief soon, Mariel.:hug::hug:

Spasticity got less after I took demerol (I hate to do that). I guess I just didn't feel it any more. I was able to walk and went to vote, although the numbness in my feet made me feel like I was walking in galoshes (old fashioned rain boots, in case anyone is too young to remember galoshes).
I listened to the program about Romney's life on CNN and was of course fascinated with Ann and her MS diagnosis period. She struggled for a few years and then, implied by the interviewer, she "got it under control". But they didn't say how. Some of us might be interested?

Somewhere I read that Ann Romney's MS has been in remission for many years. Sorry I can't come up with the source for that just now.

My hands are getting less mobile these days, and that could be arthritis instead of MS. My jaw has developed an odd habit of falling open and staying open. This must look very strange, and I have no idea why it's happening except that maybe it's some kind of spasm.

I'd be interested in knowing if anyone else has anything like that going on.

I'm sorry Joan. :hug: I have sinus problems, so nose is stuffy most of the time, so mouth hangs open.:eek:..just like that.:p Could that be your reason?

I use sinex spray to upen my nose and close my mouth. I have to think about it too...habit.:rolleyes: Dry mouth is a result and that's bad for your teeth.

I hope it's something you can remedy soon and it's nothing more serious.. :hug: