Yep when yer busy it takes the mind of your own problems, and when its a good deed it worth double

I think i mayhave passed somekind of marker today. Got up this morning with a good todo list.  Started in with the stabbing gut pain and nausea. Figured I could handle it with some meds, BUT, then Stella had to,jump into the fray. Right in the middle of changing my appliance she erupted (no exploded is better). As I was surveying the horrid mess all over me and the bathroom, I started to cry.  Started telling myself I just couldn't live like this. I am sure you have all been there.  Then for some unknown reason I started to laugh ... histeria perhaps,?  I looked at things again, started mopping up the mess, put a load in the washer and climbed into the shower.  Put on fresh clean clothes and appliance and headed out for the to do list.  I don't understand why I started laughing there wasn't anything funny, but I did, and I was able to pick up and go on yet again. 

Hi Msbjiee, firstly it sounds like you had a blockage just before your road to Damascus moment. You beat your illness the day you had yer stoma, When you thought you could not go on like this it was still winning. WHEN you laughed you realised that. Hope you got all done on that to do list! Good on you!!!!!!!

There now, your have arrived!! Laugh at it.. I have many of these also, Most of the time we don't have any control of these --  I always keep a box of tissues at my changing area.. It is like changing a baby boy sometimes huh?  YES, we do tend to have a cleaner bathroom floor and cabinets now do we?? I am lucky, I have my laundry on the first floor of my house, and it is right around my bedroom.. Your learning how to work with it.. Good for you-- I have a plastic 5 draw and u can attach wheels on it in my bathroom-this contains at least the 2 Bigger drawers of all my stuff I need for a change..  Enough for 2 weeks worth..  And a chair that I have towels on incase of the explosions.. Then I cover the chair with a nice colored BIG towel to match the décor of my bathroom.. Just flip the colored towel over the back of the chair, and I am ready for what may come..  Also, I keep a spray bottle of Lysol/with water mixture for the room clean ups.. Another "MY PACE"  in the house.. Hope u got you to-list done!! 

I always did volunteer work, LOVE the ELDERS.. (now I am one) But with the copd, and 3x/week, infusions, just don't have the proper time for  this-- or the engery-I use my engery for my home -- and family.. IT is a good thing to do, happy that u found your guide outside of yourself.. Wonderful!! I will get there again!!!!!!! 

I always did volunteer work, LOVE the ELDERS.. (now I am one) But with the copd, and 3x/week, infusions, just don't have the proper time for  this-- or the engery-I use my engery for my home -- and family.. IT is a good thing to do, happy that u found your guide outside of yourself.. Wonderful!! I will get there again!!!!!!! 

Msbjlle, and to all:----------------------

Your life has purpose.

your story is important.

Your dreams count.

Your voice matters.

You were born to make an impact.. 

unkown.

Msbjlle, and to all:----------------------

Your life has purpose.

your story is important.

Your dreams count.

Your voice matters.

You were born to make an impact.. 

unkown.

I like that a lot.  I love to write poetry and am published in it, but have found myself slightly stumped because I do not know how to write or talk about my stoma and poops-e-daiseys!

When I was so ill,  and so very weak, I fell in love with the song...On the Right Side of the Grass!

I too have arrived and am as of... starting to talk about my situation and some experiences after remaining silent for 8 years, starting to enjoy new  "friends with friends". 
Thank you!

Linda K.

If you do not mind my asking...what infusions are you talking about here?

I know that before my three summer blockages, I had said to my doctor...who I will make sure he listens to me next time...I said that I felt like I do when I need a bag of I.V.  It wasseveral days later that the blockages rudely developed and were such scolded for!

Linda

Msbjlee......I feel for you! My first volcanic eruption was at home two days after getting out of the hospital.  I could not bed to clean up very well, but did it anyways as there was no way  I was going to expect someone to clean up after Roses eruption...this is also why I sometimes call her  Mt. Visuvious...or how ever you spell it...I think I shall change it over to Mt. St. Hellens, a tad more feminine, but equally messy.  I have learned to place some toilet paper over my stoma when she is out in the open.  Am I really the only one who changes there bag sitting on the toilet?  I also use a three drawer plastic container with wheels to store all of my stoma stuff in.  It is all there handy and healthy and happy.  Anything you may need.

Does anyone else deal with the fear of running out of toilet paper?  How I would so love a lifetime supply delivered to my door weekly!

I already eat slowly and chew so thoroughly it is crazy, I can eat popcorn in moderation and corn on the cob also in moderation, but combat with other foods.  Like a spud!  They just help keep the group together!

Have fun always...

Linda K.

I am serverly dehydrated after my surgery.  Been getting 12-14 pound of fluids through my power port for 3 years now- We r all prone to dehydration--but I got lucky and stayed there.. pain in the ass.. I have better things to with my time.. I want to go and play and do for others, - - I lost 55 pounds-and cant gain a pound back-- 5' 8" 114 pounds.. Yes, I do drink - but so much goes right to my pouch--so I have an HIGH OUT PUT as they call it.. I was empting 20, times a day-but down NOW anyway to 10.. kinda normal.. I have days that it is thick and then some days like yesterday?  All liquid.  AND boy do I eat!!!! I east more than I have ever did in my whole life-- will be 68--  So a new me and a new me all over. and a new life and a new normal.. I just so darn NEW!!! haha

Thank you Robert. I sure appreciate everyones input...not something I am used to as I am somewhat of a loner so far...not too many talk about there poop or there bags and  I think everyone is amazing!  Eric rocks and then some!

Linda, I was so weak and having to learn how to walk again, I messed up the rehab/nursing home bathroom every time.  Then after 2 months there, I got to do it at home too.  My son came over to cleaned the bathroom for me.. One thing I don't have anymore---- is the piddle rug around the toilet.. Always a bit of drops around there--So, just a wipe up--another daily chore.. Like I said we proberly  have the cleanest bathrooms ever in our life now huh? One time, I got a bad leak in bed, and I got up and it got all over the wall the wall to wall carpet in the bedroom. My other son went and got the rug shampooer and cleaned that up and changed my bed by the time I got out cleaning myself up..  So, I do have support and no complaints.. They are trying to find THEIR way of support.. I WILL TAKE IT!!! As they see me taking care of myself.. And them, I try hard as I am tried always-but I give them a nice clean house and great meals..--Sons vacume tho-- I don't do yard work, (hate it) Not a big house- just over 2,000 sq. feet on one floor-ranch-LOTS OF WINDOWS--and the same space down staires with walk out and 2 windows.  It works......... my best. M.

msbjlee......I totally get it.  If I had not been forced into getting up and going to take my man to chemo and such three hours  each  way, I think I would still be resting and trying to get my up and go...going!   I think I had written that  I was so tired I could not open a can of soup...some days that is still the case.  I have also been blessed with Osteo Arthritis,  get ready for the rest...Fibromyalgia 18/18 in 1996, one of the first from what had been yuppy flu to a more sincere diagnoses of the FM.  At last a real word for the fatugue and muscle pain from head to toe.  I also have a nasty bladder  disease...interstitial cystitis, always feels like I have a bladder infection,  Asthma, and I live in the beautiful Okanagan,  our summer was that of muted  gold and yellow undetones, affected the plants and gardens oddly!  Smoke...yikes!  I have got  some auto immune issues, Anti-phospholipid antibodies,  and  anti-nuclear antibodies.  I will let you know if I remember the rest.  I try not to think about it all rolled into one!  Too overwhelming but it sure explained a lot.

As for being a widow, I had just turned 50 and he 49, that was the hardest thing I have done. Nurseing him thru his trial while shoving mine aside till later...a year and a half later.  After he died, the funeral done, I had legal things to take care of and then one day, I just could not get out of bed.  The exhaution had hit hard and fast...maybe slowly, a build up you know.  I had to allow myself to stay in bed and rest, I crocheted from bed, I cross stitched from bed, read and slept many hours at a time. Talked on the phone told the truth to few and far between for fear of being labled lazy!  I did loose track of days and even months if I am honest, but it was good.  My body felt like it was healing from the total of nine surgeries, my husbands cancer journey, and the present  endless fatigue.  When It started to pass,  I could feel bursts of energy, puzzled by the feeling as I did not recoginize it as a good thing at the time, it was rather scarey.  Some days I would leave the house and loose track of time, five hours would pass, nothing to eat or drink before and during being out.  Anything to avoid a public washroom.  The fatigue I still deal with  seems to have caught up with me from doing so much this summer.  I loved that though.  I can deal with the fatigue, I am  the only one for the first time in my life not making demands of my time or me.

So when I reach this faigue, I set back, huddle down, rest sleep read whatever my heart wants.  I listen to my body and obey it.  I eat simply but healthy meals.  Lots of homemade soup. stews and what have you...  I make it over summer, save it in the freezer for winter and enjoy it thru the year.

But yes, listen to your body saying rest me, it makes a diiference even when it seems to go on forever.

Linda K.

Good for you!  I am not that lucky,  but I do have my wonderful son also.  He will run for groceries for me and will once in about 7 months vacuume. My relocated to heaven,  hubby and I shared the chores, but now being on my own has been interesting in finding my own way in life.  I find planning for a family gathering totally exhausting and endlessly tireing.  My kids are healthy tho, except that two months after my hubby passed my daughter was diagnosed with MS.  I was devestated by that but it was not cancer, we can work with it.  Tho  I never said that to her, she has  backed way off since her daddy died and I believe that she misses him as horribly as I do.  Her Ms is relaxing and remitting.  Comes and goes, is away when pregnant.  I have two baby grands and two older 10 and 13 steps.  Our almost 30 year marriage was awesome and he was amazingly understanding about fatigue and having to cancel events due to the runs or what ever came my way.  I wish I could be that understanding to me!  I often feel annoyed by what life throws me but have deffinately learned to laugh it off for sure.  Yes, my bathroom floors suffer as do the walls.  That is the volcanic part of Roses name!  Fortunatly  having rugs cleaned due to her attitude  has not happened yet, and I did buy as soon as I could  a few of those mats they put under you in the hospital, I used towels before also because menopause also hit at the time of my first big bout of surgeries.  That is another story. I do not think I have slept thru the night more the six times in 8 years.  Wonder why I feel tired all the time.  I also have a wierd arythmia with my heart and SVT, supra ventricular tachycardia.  It wakes me from a sound sleep with my heart beating thru the roof.  Oh yes, and Hypthyroidism.  I ask once in a while am I having fun yet?  

Still enjoying life, laughing at me and roses antics...especially when she is tooting her own horn and embarasses me to death and then some! It truly helps to say some of these things as loud as this page gets.

Thank you for listening.

Linda K.

Sounds like you HAD and HAVING a nervous break down Linda.. I don't think God himself could handle all of what your have been through!!  First place, u never got to properly rest after your surgery which is so important.. And proberly not eating well either and this is a set back if u didn't know it then, and your body is suffering too, not just your mind..  Things just rolled on you and not over you.. You got hit in every direction.. You have many baskets to separate and place each issue in only one of each of them-then take time off..  after a few months? Go and check these baskets (in your mind) and see which one you want to attend to.  Just one at a time.. 

Got any jokes?????????? 

Linda, you will be fine !! Being on your own after all is not an easy thing to do when your ill.  But u seem to be getting along o.k.  Maybe have some time with you family-grand kids are great-from what I heard-something I would never have.. DO u know how lucky u are?? You are so blessed to have them.. AND let your family help you-- Make a plan-dates,time,days, what u need-order out-enjoy. let them HELP YOU, let them KNOW that YOU NEED them at this time..not next time TODAY and always.. MOM needs you!! go for it!! Good luck!!

You don't have to write about your stoma right away- but u can make notes of some of the funny areas of it.. I bet your pretty good!!! Relax, and just write what come into your pretty little head.. Share it with me/us.. or share one that you have written.. I appreciate special talents-because I don't have any!! 

Or u can start a stoma poem and we can add on.. that would be fun huh? 

Thanks...neededthat