o/t the SOB story

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mykidsmom
Posts: 3134
Joined: February 9th, 2012, 5:09 pm

o/t the SOB story

Post by mykidsmom » December 1st, 2017, 1:00 pm

I hate bloomin sob stories.....so im going to tell you mine lol.....Im not actually looking for sympathy but rather putting this down on paper (forum) because i really cannot believe one household can possibly have so much drama in one month....

Ok you know about the lupus flare up ive been having since May...its affected every bit of my body including bits i never knew existed....and all pain meds..any meds in fact including prednisone stopped working for me...and ive been unable to pretty much walk more than 3 steps for the past month.......kidneys keep hovering on kicking the bucket...because the flareup went into the nervous system im like a mad dancer half the time i cant predict where my limbs will end up or what direction they'll want to go....the heart keeps having a party too but thankfully the flareup is too busy trying to see what else it can control to pay too much attention to it...and feck it..i have the ICD anyways....so this is my life...poor willie is on double duty doing everything from shopping laundry, housework you name it...he also has taken over the primary babysitting duties....and hes gotta drive and push mel and i to all drs appointments....today i cant stand...

So about a month ago....daughter #1 fell down the stairs and ended up in hospital..her medication was off kilter...but the fall involved 8 stitches over her eye, and some damage to the eye...and shes being tested now for lupus.....cos the medication thingy is very unusual....she was in hospital for about 2 weeks...during which time we all got the flu....

While mel was in hospital..i also spent some time in the same hospital...and ive now got some septic infection going in the foot which requires dressing changing 3 times daily..

anyways all home again...and mel fell out of bed, and broke her clavicle....they strapped her up and kept rechecking it cos it was an unusual break and finally this week decided she needed surgery...which she had on tuesday....

On sunday daughter #2 slipped in the shower and broke her elbow...which also was one of these breaks which could require surgery.....they checked it yesterday and still think its not going to heal by itself...so next week will be the decider ...surgery or not...

so this morning....little ben comes in at 7.30am...willie made him breakfast....made mel and i breakfast...tidied the kitchen then took ben to school...came home...put on laundry, and helped both mel and i to the shower.....then he changed mels dressing....helped both of us get dressed..did some grocery shopping....tidied around the house and made lunch.....and about an hour ago i made him get his camera and go out for a bit.....some time for himself....then he'll pick ben up after school...now with all thats going on here....ben is our bright light in the day....

I guess my question if i had one would be......are our lives normal??? i sorta dont think so...i think its payback for some dreadful deed i musta done in a previous life
I think.....Therefore I am.!!!!!

Grammaram
Posts: 520
Joined: May 30th, 2014, 10:37 pm
Location: Eastern Pennsylvania, USA

Re: o/t the SOB story

Post by Grammaram » December 1st, 2017, 2:25 pm

Reminds me of on old saying - “trouble comes in threes!” I can’t tell you how often that has been true in my life - never a single thing - it all seems to come at once! Kinda like the grocery store (I relate to this because my husband worked in management for 45 years) - you go in the store, and there’s a few people in line, but then everyone is done all at once and the front end is jammed. Seems like troubles hit us like that, too - they seem to all come at once!
I don’t think of it so much as a punishment for a past, but moreso how I can learn from or use my experiences to help someone down the road - more future focused. This site is an example of that - we all draw on the experience of others - because they, too, are living it. Don’t get me wrong - the “living in it” can be pure hell, but at some point all things do come to an end - including life (as others here are dealing with as well.)
I read so many of the stories of yourself, and many others here - and my problems pale in comparison. I have no words to make things better, but I am in awe as I watch you and others deal with the difficulties life throws at us. I admire your strength and humor. Don’t worry about your “past” life; your attitude and strength in the present are far more valuable. dancehearts

Margaret wavhi
Congenital Heart Disease - Tetralogy of Fallot - repaired Sept. 1966
Medtronic Evera S DR Implanted May 22,2014

mykidsmom
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Joined: February 9th, 2012, 5:09 pm

Re: o/t the SOB story

Post by mykidsmom » December 1st, 2017, 4:45 pm

Your right margaret..its just today im hopping around here looking at willie flying around like a blue arsed fly and not being able to help him...and im thinking what is this all about lets have a break..your right..things always do come in threes here too...i sorta want to just go to bed..and stay there till things improve though lol...
I think.....Therefore I am.!!!!!

DebW
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Re: o/t the SOB story

Post by DebW » December 1st, 2017, 5:07 pm

Sending big hugs!!!!
:big-hug: :big-hug: :big-hug:

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Ozchrissy
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Joined: September 27th, 2008, 9:28 am
Location: Australian

Re: o/t the SOB story

Post by Ozchrissy » December 1st, 2017, 6:50 pm

A couple of years ago Helen I decided that I would check out the Buddhist philosophy. I did gain insight into meditation BUT I found that I was totally unable to come to terms with the philosophy of karma. I had a very long conversation with a Monk, an Aussie who had converted to the religion and was one of the more senior monks in our local community. We have a big Stupa and community just outside of town. What I could not understand was the idea that what happens to us in our lives is a result of past lives. Personally that to me was cruel, I was exposed to a bad experience when I was only 8 and a complete innocent, so why would this be allowed. I got a better explanation from my GP, he quite simply put it that some people are given a lot of problems and issues to deal with, and he has noticed that it is the 'good' people who are normally the ones who are put through this.

I like to agree with him, when you look at your own life, and how everything has pilled up on you all the time, and yet you are still able to laugh and love, it is as though the Universe knows that some of us can deal with it, and some can't. I like to look back at my life now and think that I would not be the person I am if the chit never happened. Why this is so I can't explain, but it is what happens, and we are still here to take that next step, to wake up to a new day, to nurture the next generation, to love and care for our loved ones. We can't change WHAT IS or WHAT WAS, but we can change how we manage our situation and our response to it.

Love you heaps wonderful lady, your are an inspiration and make my world a better place by knowing you.
“I am not what happened to me, I am what I choose to become.” Carl Jung

Diagnosed with cardiomyopathy in 10/99
LBBB & VT diagnosed Feb 06
Guidant Biventricular Pacer ICD inserted Feb 06: Boston Scientific Incepta CRT-D inserted May, 2012
Oesophageal Cancer, 2012, Gall Bladder & Septicemia 2014 resulting in VFib and severe heart damage
Bare Metal Stent May, 2012 Mitral Valve replaced 2015
Meds: Entresto, Bicard, Coralan, Eurtorxsiq, Frusehexl, Spiractin, Sigmaxin, Creon, Warfarin,
Appropriate Shocks for Ventricular VFib.

Grammaram
Posts: 520
Joined: May 30th, 2014, 10:37 pm
Location: Eastern Pennsylvania, USA

Re: o/t the SOB story

Post by Grammaram » December 1st, 2017, 10:05 pm

I forgot to ask in my previous post - are you eligible for any type of home health service to help out your poor husband? I don’t know how the system works in Canada, but here (U.S.) we can get a home health aide to come in and help with personal care needs (showering, dressing, etc.) Some can even do light housekeeping, or shopping. Just a thought :)

Margaret wavhi
Congenital Heart Disease - Tetralogy of Fallot - repaired Sept. 1966
Medtronic Evera S DR Implanted May 22,2014

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TruckerRon
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Location: Provo, UT

Re: o/t the SOB story

Post by TruckerRon » December 2nd, 2017, 11:34 am

Home health services in the US include being driven around so you can make it to medical appointments, shopping, hair appointments, etc. I know about it because my wife recently became such a driver! She earns far less than I did as a trucker, but it gives her something positive to do for someone other than a family member. It's covered by Medicare and/or Medicaid.

Because we have our severely handicapped Amanda, we qualify for respite care... which gets her out of the house a few hours each week so the rest of us can have time and energy for one another. That's covered by her Medicaid.

So, I also don't know what's available in Canada, so please start asking your local experts. Willie deserves more help than your family is now getting, and it may just be a phone call (and a few hours of paperwork) away.
TruckerRon -- Received Minion I on 17 Sep 2009, Minion II on 26 Jan 2015

Non-ischemic cardiomyopathy
Medtronic Viva XT CRT-D
No shocks yet...
My intro is at: http://www.icdsupportgroup.org/board/vi ... 099#p57099

mykidsmom
Posts: 3134
Joined: February 9th, 2012, 5:09 pm

Re: o/t the SOB story

Post by mykidsmom » December 3rd, 2017, 12:17 am

yes we have similar stuff available here too ron..home help..respite etc etc..weve never availed of any for mel though so far because until this past couple of months its been fairly easy and routine....although it might change this week..because of the slings incisions etc etc she needs help bathing and with personal hygene..and although ive been doing this its very difficult considering my own situation now......we also qualify for some weekly hrs respite which im planning on booking this week too...i will also qualify for similar for myself....heres the thing though.....although willie on board with getting the respite organized for mel..(part of it is a 90 day period broken down to weeks which we can book ahead of time to get some stress free vacation time) hes not on board about me organizing any of this for me...he feels he can do it all..and he cant....i was mels principal caregiver for years..i know what its like...it can be exhausting, worrying and very difficult... the cannabis oil is a great pain reliever..but because mel does much of her rambling thro the house at night..im leery about using it so im in constant pain...its difficult when you have a child to look after and the child will always come first..melanie although shes 43, well..shes still out kid lol..as you understand i know..

my principal big worry though in all of this is willie..
I think.....Therefore I am.!!!!!

slk123
Posts: 645
Joined: January 27th, 2015, 8:00 am
Location: Northern Illinois

Re: o/t the SOB story

Post by slk123 » December 8th, 2017, 3:46 am

Maybe Willie needs to find some of this out for himself? It’s easier to explain something to someone who has gone through it. Maybe he’ll see the light after experiencing how much actually needs to be done, and then concede a little bit.

I believe in karma, but I also believe bad things happen to good people, too. Hang in there!
Best wishes,
Stacey

CHF Jan 2016
ICD Nov 2014
LBBB Nov 2014
Sudden cardiac arrest Nov 2014
Arrhythmia Aug 1982

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