losing desire to fight

[pennst8r]

Hey, all!  Badly in need of a kick in the pants right now. I am having possibly the toughest week I've had so far, but cannot seem to find the will to fight it or even to schedule the tests that I fought so hard to get orders for. I start to, and then think "what's the point?" My spasms have been so bad and so frequent that my poor DH has had no sleep for days either. Today's first day I made it all the way through work. I really feel like I'm just a huge pain in everyone's arse. Still coughing so hard that abdominal walls (what's left after 6 surgeries from a huge mass and its aftermath - have large area that is just mesh) and neck spasm all together; makes it hard to breathe. Muscles feel like they're "rippling" even when not spasming - all day long. My limbs are alive - but not with the sound of music, LOL... sorry, sounded much funnier in my head.

OK, done with the pity party! Just needed to get that off my chest. Hoping tomorrow will be a good day and can catch up on the "War and Pace" sized amount of posts I've missed - haven't been on in a while - waiting to feel human first.

Take care

Penn

[Quixotic1]

Yes, now that you're an "Inspiration" we require a weekly report on how church went!

Lisa - there is a very useful word in our language.  Difficult for some, but necessary to stay alive and in one piece.  That word is "No."  You need to learn to use it judiciously so you can continue to volunteer your sweet, pointed, little head off.  If you do too much, then you will end up failing at all things because you have used up all your reserves.  This is Den Mom talking, you know Queen Mum and all that.  Preserve yourself for your passions!

Quix

[pennst8r]

I am indeed a pathologic volunteer - better than a pathological volunteer you must admit, lol. I tell people I can't help it; it's a sickness. My mother raised me to be one, just like her. She started me off when I was in grade school. It was expected - of me. Wierd, I just realized that it was not so much the case with my sib's, just me. I'm the baby. My mother and I were extremely close and VERY much alike, a point my father uses like when he's mad @ me. "you're just like your mother" - I always thank him, as she was my hero. I think she was actually worse than me. So you see, it's not my fault. I can't control it, LOL. Seriously volunteering is a great passion of mine. It's a HUGE part of who I am, and of all my goofy parts, I do not want to lose that one.

as for work, I'm one of those supervisors who will tell sombody calling off with a headache to take an aspirin and get to work. I'd be a hypocrite if I stayed home. Besides, I think work keeps me sane - to whatever I am sane that is! My obnoxious stubborn streak is what drives me.

Penn

[Momzilla]

Yes, I agree with T.  I admire your spirit, for sure!  But this is not an endurance test, my friend.

I went to the nature center with my three youngest boys this Saturday, because the 11 yr. old had a 'leaf project.'  It was a beautiful Michigan day.  Was there for an hour and a half strolling leisurely along looking for 20 different varieties of leaves.  Saw some ducks, geese, chipmunks and a snake, too!  Great time with my buddies!  

But, boy, did I pay for it.  I wouldn't trade my hour and a half, but I'm still wiped out and shuffling around today.  Made it to church, but sure didn't feel like it.  

My pastor sent me an email recently telling me he was glad to see me attending, knowing it was difficult for me.  I have NO idea how he knew I have had health problems.  Good news travels fast.  Of course he can see me shuffle, and my hand tremors at Communion.  But, in his email he said I am an inspiration to people who know I am struggling just by showing up for church.  Yuck!  Ew!  Please expect a little more out of me!  I'm not dying, for heaven's sake!  I appreciate the sentiment, but, please....

Well, now I feel that pressure to attend, even when I DON'T  feel like it.  Isn't that dumb?  I love going to church, I do.  But sometimes, I can't get into the shower and get all the boys AND myself ready, but after his email, I'm stuck going, because I'm a stinking inspiration!  Not really, but I know he notices, I guess...Which is good, I suppose.  It motivates me to go, and I'm always glad I went.  Then I go home and nap after a donut!

But this is about you, Lisa!  Take it easy!  I certainly wouldn't be teaching with how sick you have been!  What the heck?!  Are you training with Kristin for the Olympics, too?  I know you have the work ethic thing going, I get that, but there's something more sinister going on.  You're a pathologic volunteer, or something, aren't you?  We need to look into that....

Slow down and get better!  If your job doesn't hang in the balance -- get in bed and recover!

Zilla*

[T-lynn]

I admire your fight and commitment to your class,but what good are you gonna be to yourself and your class when those legs completly give out and they stick your hiney in a hospital.

I was there 2 weeks ago couldn't walk for 2 and a half days.i ended up in the ER!!!!Your hubby should of tied your stubborn hiney to a chair.

Make that dang appointment.You deserve an answer to whats going on and that LP will rule disorders in or out.You could of had it done with by now!!!!!! You fought hard for those test!!!!

Sorry to hear about your neice's soccer team losing,in my mind these kids that go out and play these sports are all winners,win,lose or drawl.

My oldest played soccer her freshman year of high school in Michigan,she played soccer and ran track at the same time,they got beat at states.It was the first year that school has a soccer team.She also ran the 2 mile for the Ronald McDonald meet only the top 16 in the state ran there.Then we moved to Ohio and come her senior year she lost interest,they run there programs a little different here.

Yes the penn state ,ohio state should be a good one.I gotta go Ohio state on this one.I grew up in Ohio.

Have fun next weekend ,conserve your energy this week if possible.

T

[pennst8r]

I'm working on it (building some fight up, that is). I pulled out the script for the LP anyway. Try to make myself call tomorrow. Napped a lot this weekend. Got really overheated just in my house - had windows open and heat crept up to 80 when I wasn't looking. What month is this??? Made for a  rough evening - felt like on fire, walking like a drunk, brain fuzzy. Had a good fight with my DH over going up to church to teach my confirmation class tonight - I insisted on dragging (almost lterally) myself to teach. He had a good old fashioned hissy fit, since I was having such a tough time walking. Wants to know what I'm trying to prove. I'm trying to prove that I'm still me -- duh! Trying to prove I'm stronger than whatever the heck this is --double duh!!  It's very important to me to honor my commitments, no matter what. I've been teaching for 13 years. We have no teahcers to spare, and these are my kids - can't let them down.

By the way, I noticed that my days of really brain-numbing spasms last about a week and come about every month or so. Not sure what that measn, but it's food for thought. Had a hysterectomy years ago, so I doubt it's hormonal, but interesting nonetheless.

My niece's team lost in golden goal overtime, bummer. Awesome game though. She's a tough one, my Hannah - girl after my own heart.

Funny you mention the Ohio State - Penn State thing. Next Saturday is my anniversary and we have tickets to the OS-PS game! Staying in an adorable little log cabin built in the late 1700's. Sounds so romantic - I WILL be well enough to go, dammit. We met @ Penn State - go up as often as we can. That's where we want to retire.

Penn

[T-lynn]

Checking on how your doing.

How's the rocky impersonating going.Keep fighting you'll get it back.

How was your neice's soccer game.I use to coach my son't team in my younger days.I sure enjoyed the kids.Now he plays football,they are going to the play offs.He'd like to play for the Army!!!!

I keep telling him Ohio State and Hubby tells him Penn State(as long as its not Michigan---his favorite team).

T

[pennst8r]

Was up quite late last night  - 2 or 3. Played poker most of time - did far better in regular games than tourneys - a lot of people in regular games are beginners I guess and easy to bluff, lol. WVa just put in poker tables, would love to go down. Playing w/ real people is more fun; I can read faces pretty well. That's real money though.

I am feeling a little better, thanks. Still really need sleep, but my muscle apparently beg to differ. At least on weekends I can take a nap if I don't sleep - that really helps. Hard to do that during week. I usually end of cat napping after work or I'd never make it through the evening.

Take care. Congrats on your winnings!

Penn

[LLWB]

Still up? I just got back from our Indian Casino with my Sister in law, and I won $125.00! Think I'm going to order a Cat hotel/Condo for new kittie with it! Hope you're better penn.I love to play for "fake" money too, and I play cribbage and backgammon online, but everybody quit playing crib with me.....I'm very luck...but my arms right now are doing their "restless" thing, driving me nuts! Granny, don't loose all your stitches, or you'll have to get your sewing basket out! LOL God Bless

[pennst8r]

Funny thing is I was still up @ 2; was playing online poker while my muscles played hopscotch! My heart rate was fast all night (105) but my BP was low (110/62); happens alot -wierd.

Good thing I only play poker for fictional money 'coz it was a losing night. I usually do much better. Used to be able to play more than one tournament @ a time, but too hard now.

Gosh, I hate to hear your incisions popping open, even a little bit. If my leg cooperates, I may go look for an exercise ball. Sounds like a good idea. I do need to update my timeline too.

I am hoping that over the weekend, I may build some "fight" back - if I get some relief. When I have the really rough patches, it literally takes every ounce I have to get to and through work. I'm down for the count all evening. I hate to miss work. The up side is my DH has become quite the cook! At least I am off weekends, so I can conserve that energy. Promised my niece I'd go see her play-off game. She made all section on soccer; I'm so proud! Soccer's my game - addicted to it. Used to coach and referee in better days. Sigh.

Anyway, gonna go do my "Rocky" imitation and try to get back some type of fighting form - or at least the urge.

Penn

[grannyhotwheels]

How are you feeling today?  Well it's probably still sleep time for a normal person.  It's 2:00am here but I'm having a few of those spasms you are talking about.  Both legs are jumping like crazy.  When it started you where the first person I thought of.  I know exactly how you are feeling.

I've been walking a little but my knee is pretty sore from the surgery and with every spasm one of my incisions pops open.  At least they are small cuts.  I just took a muscle relaxer and put the exercise ball under my legs and rolled from side to side for about 5 min.  For some reason this seems to help me.

If you don't have a ball you can still put your knees up and roll from side to side.  It may help with your shoulders also.  Any way this is just a suggestion, you never know what helps until you try it.

I hope you get to feeling better real soon and keep your doctors appointment.  Let them know what all you've been going through.  Keep it all written down on your time line.

I'll be praying,
Carol

[pennst8r]

Thanks for your kind words. I wish I felt that I had inner strength. Both my parents had unbelieveable work ethic and passed it to all 6 kids. They also passed on a serious stubborn streak. That's what's pushing me right now. I'm just too darn stubborn to give in even though I REALLY want to.

The major spasms continue. These really bad ones seem to stick around for a week or so then subside to my normal spasms - "normal spasms" good grief! If this holds true, they should be subsiding in a few days.

Penn

[mokibear]

Not much I can add as everyone has such good advice other than I pray that you feel better soon and I am amazed at the inner strength you have. To go to work feeling the way you do is incredible. You are amazing. But please listen to the others and if things don't get better get to the ER.

Moki

[kitten o]

I HAVE TEARS IN MY EYES,
I HOPE YOU FEEL BETTER.
WHEN THEY GET WORSE GO TO ER PLEASE.
I AM LEARNING ALOT ABOUT BACK SPASMS ALSO.
I JUST STARTED WITH SOME THIS WEEK, IT HURTS BAD.
GOD BLESS US ALL  
KITT

[pennst8r]

I feel like a bit of a schmuck for carrying on so. I do truly feel like I described, but needn't have spewed it out quite so messily. Made it through work again. While holding my monthly meeting w/ my staff, 3 different areas of my shoulder and arm were visibly twitching with great enthusiasm - talk about distracting! Some of the staff could see them too - some were a little creeped out about it. I'm a little creeped out about it too, so what can you say?! Lots of foot and lower leg spasms as the day wore on. Lots of coughing followed by abdomen spasms. But I made it the whole day and still standing - sorta. Even got a little work done in between all that!

You ladies and gents are just about the most amazing group of people I could ever have run into. I am still feeling good and low, but will try to muster up a little of my fight back over the weekend. I'll write later - time to go cough up a lung=)

God bless all you fantastic people.

Penn

[Nanners123]

A lot of good advice provided here to you. I wanted to just drop a quick line to say my thoughts and prayers are with you. Keep the faith and stay strong.

Nanners

[Quixotic1]

How are you doing this morning?  Quix

[T-lynn]

My heart breaks for you,I have been where your at and these spasms can be debilitating and exhausting.

You have that pity-party all you need to.Before they started mega doses of meds I'd get them that would last up to 2 hours and then I had to sleep for hours afterwards to recoup.I'd cry for hours because of the pain.

Even though they keep my muscles sedated now if I move the wrong way,I get them.The paraspinal spasms are the worst for me.

You inspire me by working and handling the spasms,your a tough cookie.

The next time call the EMS,let them document what they see,this will work in your favor.If a DR don't see it they don't beleive it.

Now girlfriend we need to discuss the additional test you had to fight for,CALL AND SCHEDULE THEM!!!!!!!!!!!!!!  They may or may not give you the answers you and your DRs need,but they need to be DONE asap.

Don't give in to your disorder,you need to fight it and your Drs for the proper DX.And for that cold ,I'm gonna tell ya a little story,years ago,my hubby who never got sick had a cold and I just happened to have a DRs appointment with my GP so I had the GP check out hubby,they done a chest x-ray all was fine said it was more than likely viral, two days later he ended up in the ER with double pnemonia.So what didn't show up one day sure did in a few.I guess the same applies with MS.The lesions don't appear one day but the next could.

Sweetie,you have fought tooth and nail for a DX,you deserve to continue the fight.I swore off Drs. until I got a letter from the local clinic stating a new neuro would be coming and would I like to make an appointment and go over my medical history.I made the appointment and almost didn't go.After spending an hour and a half with this neuro and he reveiwed my test and MRI's he looked at me and said you definately have MS,just not a classic text book case.

Keep your fight and have that cold reevaluated.

T

[crystaly]

Hi penn sorry your feeling so rough!! Lifes a b**** sometimes and yep kno what you mean about giving up and the kicking self up the ***se as well Hang on in ther Hope your spasms ease off
xx chris

[Momzilla]

So sorry!  I work for just a bee-utch, so I can't talk long.  I'm hurting for you.  Will write later at home.

Hang tough!

Zilla*

[doni54]

I totally agree with everything Heather just said.  I think this board keeps us all going cause no matter what we are going thru there is always someone here who is going thru worse things.  It helps us all to be here for one of our family.  

To give love and support to each other is the utmost gift.  We are all blessed to have found one another and we will all get thru the bad times together as one.  I think this group might at times have pity parties, but I think all of you are the strongest group of men and women I have ever had the opportunity to know.  

Stay strong, Penn, as your strength gives others on this board their strength.  A little ice cream can't hurt either, huh?

Feel the gentle hug from us all and know that we love you and are here for you.

With love and prayers....
doni

[Heather3418]

Guess what?  Did you know that your post helped ME?  How?  Because despite resting my head in my hands yesterday and bawling like a baby due to the relentless pain; I read your story and know that someone actually has it worse than I do.  You are going through so much.  Your post really touched me.

I figured if Penn can feel that bad and go to work, then by gosh, I can get up off my seat and stop feeling sorry for myself.   Whether you realize it or not, Penn, you are much braver than most.  You really are....God Bless you, girl.

If there is room at the table or on some pillows in front of the TV, I sure would love to share in a bowl of ice-cream with you and Quix.

All of you just AMAZE me.....Angels with wings...right in my own presence.

Be well.  You are in my prayers....Heather

[Super_sally888]

Hi Honey,

Sorry to hear you are having such a horrible time..... would cover you in ice-cream if it would make you feel better.

Hope you managed to sleep a bit and feel better by the time you wake up and see these posts..

I do agree that a 'collapse' and trip to the ER may be  inline if you are getting nowhere with this.  If you did 'collapse' and have to be taken to the the ER I would suggest making as much drama as possible (though that would be draining), but don't hold back on the coughing, spasming, moaning with pain.... whatever.... they need to see how hard this is hitting you.  There is a time for stoicism....

Hang in there!  Praying for you.

S

[grannyhotwheels]

Who understands what your going through more than your family right here.  Having a pity party is nothing to be ashamed of we should have more of them but we are too strong for that.  

I'm not sure what is the cause of your spasms.  I haven't read all of the posts yet but when I was doing that I drank Gatorade.  It really did help.  In fact I think Quix or someone suggested it to me.  I'm not sure I may be making that up or something.  I either don't remember things or think someone said something they didn't.  I'm a little (lot) crazy sometimes.

Hang in there honey we will all sit with you tonight.  You can eat ice cream with Quix but I'm gonna drink some hot chocolate.  It's cold here in Oklahoma tonight.

Trust me I know life can really suck.  Because I'm a christian I know dying would be a lot better but also because I'm a christian I know I can't make the decision as to when that will be.  I just have to let God carry me on those hard days and hold my hand on the other ones.  He's there honey let him take over.

Please go to the ER if you get any worse.  Don't set there and suffer, please.  I agree with Quix when she said to let them find you down.  Show them what your like at your worst.  Sometimes that's the only way they seem to understand.

I'll be praying,
Carol

[pennst8r]

The doc told me my infection was not bacterial, so I'd "just have to ride it out" and could be coughing "for weeks". Sometimes the albuterol helps and sometimes, no. A few nights ago when it did not work, my GH wanted to go to the ER - I did not. I went into the shower and blasted the hot water for the steam (RN @ the hospital had told me to do this last week). Thought I would keel over and ended up with my head sticking out my window @ 2am gasping for real air. You all know how well the hot steam goes over; that's when the really brain-numbing spasms started. I spasm even on good days, but these are the foot pulled toward the ceiling, entire left leg, hurts like labor pain ones. They've not let up yet. Still trying to go to work, of course. Walking like QuasiModo, but at work nonetheless (dammit). Literally drug myself up the steps to my home yesterday after doing surprisingly little off-roading on the way home, coz I couldn't find my usual rescuers and could not walk back into the building. Straight into recliner where I stayed until today. Anyway, still at it. Working on the not crying out loud part - don't want my neighbors looking for my DH's orange jumpsuit - windows are open. Speaking of which, my God, I'm hot.

to answer questions - yes, they did a chest xray a week ago. told antibiotics will not help my "mother of an infection". They are hoping the cough will become productive and therfore do not want to supress it. I did not really go into my other issues at the ER last week, just that I'm having spasms. they did check my pulse ox - didn't tell me what it was, but I assume it was ok.

Quix, I am definitely not suicidal, just exceedingly pessimistic at the moment. I want to stop fighting whatever it is that is taking over my body - it's stronger than me. And I'm pretty strong in general. One stubborn bee-utch. I don't feel like it's my actual physical life I'm fighting for, just the life I used to have - or even a reaosnabl efacsimile thereof. It's just been SO long and so hard, I'm not sure I can do it. It's taking a toll on my DH whom I adore and do not want to cause the pain that I see in his face. I want to really suck it up and try really hard to convince people I'm fine - you know, that whole brave front. Duck into the restroom when a spasm hits so no one sees it. My son cannot deal with it, and it seems to be keeping him from visiting. He deals with crisis by avoiding it like the plague.

I have a few pix on digital camera of my foot spasms. DH is supposed to video, but it does not enter the mind when one hits - he's running for heating pads, or whatever he can think of to try. Haven't gone to ER in spasm, as they last 25 minutes - hospital is farther than that. It would be done by then.

I would LOVE some ice cream - did I mention how hot I am - it's still mid-70's here. Too hot for me now. Thank you so much for the gentle hugs.  Thanks always for your encouragement, Craig (and your wife's too). Terrie - welcome aboard and thanks for your kind words. Wish we'd been "introduced" whe nI wasn't having a melt-down. I'm usually a barrel of monkeys - ok that's a bald-faced lie, but you'd never know if I hadn't told you!

Gonna try really hard to actually sleep a bit. Thanks so much and good night,,, afterall, tomorrow is another day... another good movie, but really poor acting.

Penn