Loosing hope

Hello,


I really do not know how to begin this as I have previous stories in here that kind of give an idea of why I have a blog, but I feel like I still owe an explaination.


I originally had a blog with another blogger and recieved an email to join this site and so here I am...so any story you see with a previous date is the ones written originally on the other blog.


I can honestly say that since my last entry titled: "When it rains...", things haven't been any better, which is one of the reasons that I haven't written since June.


Lets see here, it is now November and I am still concidered "unhirable", so much since my mom left that my temp angency won't even call me unless I am personally requested from a company that I have previously temped at.


I was temping at a really awesome company and they had me booked for a month and even asked me to apply for the position, but they decided to go another way because twice in the time I was there I missed a day and the other I had to leave as my children were alone and couldn't wake up their dad...that was the scariest, longest hour train ride home that I have ever had to endure. I thank god for my kids and how good they...my youngest, Hope is only 6 and she sat in this house waiting for me to get home from 8:00 am until almost 10:30 am and didn't leave her room, so many terrible things could have happened, but it didn't.


I hate being negative, and I am so negative, but I just sit here some days wondering if things are ever going to get better.


I have been so sick lately and have been in and out of the hospital that I had to have a talk with my children to let them know that just because Rick and I are going in and out of the hospital it does not mean that they will end up that way too...they say that your children are the product of their parents and if any of that statement is true than my kids are doomed.


Autumn, my oldest, has seen so much in her 11 years already that the last thing I wanted was for her to find me on the kitchen floor yesterday screaming in pain and crying for her to wake up Rick so he could help me off the floor. I am her mother and it is my job to be strong, especially through these times, but lately I find myself so very tired and all I want to do is go away somewhere where there is no noise, husbands, or kids...I just need a moment to breath and I just can't.


Rick and I never get to go anywhere, not to the movies, not out for diner, no where...we just don't have the money...can you believe that...we can't be a "couple" because we don't have the money to pay for it or to pay a babysitter, everything and I mean everything we bring into the house goes to bills and food.


I was crying the other night telling Rick about how much I just want silence...complete silence and he said that I should go out with my friends and just get away, but what he doesn't understand is that I just want to get away with him, that being with my friends doesn't give me that release I want, and that I am so sick and tired of people asking me how Rick is or if there is anything that the doctors can do to help him...it's like they don't even listen to me, nothing has improved and nothing can be done, period!


Friends who are suppose to be there during times like these are nowhere to be found and the ones who are have their own problems that they just can't be bothered with mine, what does it matter anyway, there is nothing that they can do.


Another Christmas is coming up and we can't buy our kids presents, I have gone to our local resource centre again to ask for help and as I am so thankful for places like these I want to be able to do it myself for once...when is it my turn to give back. My church is organizing a "shoe box" thing to give presents to children in third world countries and I don't even have money to do that...it rips my heart out...I know you are probably thinking to yourselves that we probably just need to cut down on other expenses or something, but I am not lying to you...we haven't been out together or as a family at all this year...at all.


Last night we were so broke that Rick sold his games to a friend for $50 just so we could get milk and bread.


I have lost all sense of hope, I use to have moments where I would smile or laugh, but I barely do that...I just don't know what to do.


I am really sorry, I don't mean to bring anyone down who is reading this, I just need to let my frustration out somehow and screaming to the point of no voice or breaking stuff is just not a good idea.

I have to say that I have gotten very angry with God, but I have had two really positive things happen too and I need to give him thanks for them.

My church has offered to pay for them to join a childrens club that the church organizes saving us almost a hundred dollars and they love it so much that it all they can talk about when they return every Wednesday night...it's pretty awesome.

I have also just recently become a grad, I wrote my GED and past...I have experienced few happinesses in my life where I have been proud for myself, and this is one of them.

For those of you who are following me I have a new blog on www.storylane.com, come see me over there!

 

Robyn  

This story took place on

No date provided

When it rains...

What a crazy past couple of months!  Ricks new machine has arrived, we did get it on the 16th, but I haven't updated and I am sorry for that.

The new machine is bigger and pumps more air giving him more psi pressure, this is a real heavy duty one according to the shop it's the ones they give patients in the hospital.  Unfortunately, Rick has bronchitis and has been unable to use it since Friday and he is feeling the lack of sleep.  Two friends of ours payed for his plane ticket to Toronto and because we already had the flu going around the house and the difference in climate it settled in his lungs over the trip and now he is really sick.

Things have been really crazy around here lately, I have taken out my back and nobody seems to know what's wrong and my parents are moving out of the province.  I am so very happy for them, but my mom has been Ricks caregiver for the past couple years giving me the ability to go to work, now I might have to quit until I can find someone to take her place...I'm really going to miss her.

My parents have been our ever saving grace, without them we would have been homeless so many times.  Over the weekend when Rick was away I had the flu and my mom came to take care of my kids so I could sleep...I don't know too many people who would do that, but my mom does it without complaint....I love them so much.

This is such a depressing post...I'm so sorry I don't have better news, but when it rains it pours and this too will pass...things will improve and I promise I will have more to write later.

I wish everyone a great weekend and take care of yourselves!

Good News

Hello again, I just want to say thanks to everyone who have read and or posted on here in the past month…I was really wondering if I just wasting my time…I’m glad that I’m not.

This is the third time that I have erased this blog and rewritten it and hopefully three times is a charm.  Originally I had added a part at the end talking about something that had happened to my oldest daughter with an actor that she has been following that had irritated me, but after a lot of consideration I have decided to take it out completely.

My entire purpose for this blog was for a soundboard for sleep apnea and not to complain, please excuse my moment of weakness and lets get back to what's important.  If you are curious about what I previously wrote please email me and I will explain it to you privately.

That said…I have good news…as most of you know my husband, Rick, who has given me permission to use his name, has severe sleep apnea and has been on a machine known as a bi-pap. 

Originally, when we first found out he had sleep apnea he was put on a c-pap, but the amount of air flow was not high enough and it ended up becoming a paper weight around the house. 

If your unfamiliar with how these machines and methods of purchasing them they are not covered by our basic health care system and as most companies that have benefits will cover it at 70-90%, you are still expected to cover the remaining 10-30%.

When we got the c-pap I was working for The Bank of Montreal and their benefits covered 90% of the $3000 they were asking leaving us with $300 to cover ourselves, of course, we couldn’t afford that and two of our amazing friends put their money together to buy it, it worked for a while, but eventually as Rick’s sleep apnea got worse the airflow was not strong enough and because he had used it, it was non-refundable. 

Lack of sleep led to more heart problems, excessive sleeping, and seizers.  When I couldn’t take it anymore I called his specialist and after assessing his condition she put him in the hospital.  She told us that if something wasn’t done soon that he was going to die...in fact her exact words were “if we don’t do something drastic and immediately sleep apnea is going to be the death of you.”

It was during his stay at the hospital that we found out that he had type 2 diabetes. The hospital staff read his blood sugar levels at 29…*laughs* I can bet that some of you are reading this shaking your heads thinking to yourself that I am over exaggerating, but I am not, when they admitted him and took his blood sugar the metre read 29…for those of you who are not familiar with these type of readings a normal reading is approx. between 5 and 7.

After his sugar levels were under control, he was comfortably fitted into a room and put on a bi-pap machine discovering it worked…for about four hours, they were satisfied.  Their theory was even though he didn’t sleep all night with it, due to pulling it off his face while sleeping, he did manage to gain a few hours of rest and some rest was better than no rest. 

This was awesome, but because I had quit the bank a year before this I no longer had benefits and we had to be able to buy the bi-pap outright which was close to $5000.  Knowing that this was a matter of importance our doctor petitioned the government and when they denied us she re- wrote back saying that unless they cover his machine for free they will keep him admitted, occupying a bed, indefinitely.  This got their attention and within a couple days they sent us home with a brand new bi-pap machine…which bring us to our current situation…are you still with me? *Laughs* the humidifier in it has stopped working making the machine virtually useless and because it is past its expiry date we have no other choice but to get a new one, which as you can probably guess, we can’t afford.

My dad is so amazing, I don’t know if I have ever really stressed this point, but he has been calling around the city for the past couple of days trying to figure out how to get us a new machine and by some miracle he did it…Rick will be officially fitted for a new machine no later than the 16^th of May…thank you God….he is so exhausted and I have seen him reverting back into the way he was before his week stay in the hospital so hopefully now he can get a little more rest and we can focus on other things.

Thank you

Wow!  It's been a while since I have been in here, a lot of that reason is because I am not sure if it is really worth writing about...is anybody even reading this and if so is it making a difference or an impact?

My husband says that it really shouldn't matter and that no matter how I look at it I need a sound board more than anything else...so here I am once again.

I noticed that I never gave a link for Sleep apnea and thought I better as my husband has had friends ask him what stage of sleep apnea he suffers from so the link below is for those of you with questions.

 http://en.wikipedia.org/wiki/Sleep_apnea

He is what they classify as "chronic severe obstructive sleep apnea".

It's so funny, we were talking last night and he was reminding me about the time he walked to the coffee shop in the middle of the night to get a coffee, but didn't even remember going...the only indication that he did was when he woke up from his sleepy state to see a coffee cup sitting beside him.

This kind of thing happens all the time.  I do not feel safe going to sleep at night for fear of waking up to the front door being wide open and my husband is nowhere to be found.  He wonders around without having any idea about where he's going or where he's been, we even have had our neighbours bring him home in the middle of the night because they found him wondering around with no recollection of where he was heading...usually it's for coffee or smokes (when he is trying to quit).

My neighbours and I have this joke that they are going to get him a collar saying "if found please return".  As funny as this is and we laugh about it, it's extremely scary too...what if he wonders onto the street and gets hit by a car or someone thinks he's got money and tries to rob him...as he is fully capable when he is coherent to defend himself, but it's a completely different situation when he in this state and almost comes across as seeming intoxicated those of us who have witnessed him like this know by the way that he stumbles and slurs his words even though he is completely sober.

He amazes me, I can't even imagine what it must be like for him, but even though he is going through all of this he still manages to keep his calm and go on with life.

On March 14 I went into the hospital and got a tubal ligation.  This was one of the hardest decisions that we had to make and we did it as a family, but as most of you may know we have three children already and can't afford to have anymore.  When I went in for the orientation the surgeon told me that it is an "uncomplicated" procedure and that I should be back at work within a few days...it's been 5 weeks and I am just getting back to feeling like myself again.  Now this wouldn't be a problem in most families, but my husband has had to take the load of being a father, housekeeper, and husband without any help from me and he has done it without complaint and whats more...a smile...I know he is so tired that if he had the ability to actually get any rest what so ever he would take it in a heartbeat, but instead of rub that in my face he just goes on as if nothing has happened.

I am one of the luckiest people on the planet to have found someone like him.

He's got the best charisma about him and can make anyone laugh, even when they are in the worst mood ever...I am so grateful for the time that we have been given together.

I have been off work for over a month now and we have had to access our food bank, take in all our extra bottles, and I even requested the little bit of vacation pay that I receive from the little bit of hours I did work and we have barely been able to make ends meet.  I have been out of my mind wracking my brain trying to think what we could pawn or what we are going to do, and to add insult to injury AISH has raised our benefits only to lower the amount of money I am aloud to make a month.  So instead of being able to bring home close to $1000\mth I am now only aloud to make $500\mth, it seems like when it rains it pours.

I have been feeling so depressed lately, I can't eat, sleep, and the smallest thing like playing with my kids has been a task...I wish....I don't even know what I wish anymore.

I do know that I need to say thank you to my husband, kids, friends, Calgary Food Bank, and work...and to my sister's boyfriend...he came to our aid last week when we had barely any food left and my pets were even going to starve....thank you.

Unhirable Material

Working while dealing with a loved one who is sick is really difficult not just for them, but for you also.

When my husband first started getting ill, we had no idea what was causing it.  He was always such a hard worker, flexible, and liked by everyone.

The first sign that something was wrong was he suffered from his first heart attack, followed by a neurological condition known as Bell's Palsy...I have added a link below for your convenience.

Bell's Palsy

When he suffered from the heart attack I was about five years into my career in a bank; due to privacy reasons I will not say which one.  At first they seemed concerned and sent me home to take care of matters, but as his symptoms progressed they became more and more determined to push me out of the company all together.

I have discovered something very important, HR or Human Resources are not there for you, they are there for the company to help them follow procedures to the letter so that they can not be sued.

In my travels of career hunting I have come to the conclusion that even the people who consider themselves your friends who offer you a job usually only care about themselves.

If I could offer any advice at all, it would be to not work for friends it never ends well.

"You can not serve both God and money." Matt 6:24

So as you can see, I work for temp agency's not out of choice, but because I am not hire-able material. 

Working temp is not as bad as it is made out to be though, I have worked for some pretty awesome companies and even though I can't be part of the company, I am the first one they re-request when needed again. 

I also pick my hours, giving me more time to spend with my family which is the most important place as we are unsure of how much time my husband has left.

God put me here for a reason and even though I am unsure of his plan, I intend to look at my future straight on and stay as positive as I can...some days are harder than others, but we are all given difficult tasks and every day brings on whole new experiences.

I hope that my husband and I are teaching our children that even though daddy is sick, he still gets up, makes an effort to function and keeps a positive outlook on his circumstances.  For example, most fathers his age are working and tend to miss things, because of his illness, he was there for the birth of our youngest and has been able to watch her develop from infancy to age five without missing anything, and even though he is tired he still manages to make it to school concerts and functions.

He's a fighter, something that should have by all rights killed him by now,  has instead given him more determination to enjoy what time he does have left, while keeping positive even while death knocks at the door.

I will get enough sleep when I'm dead

Hello, so I have decided to start a blogg to reach out to people who are either suffering or know of someone suffering from Sleep Apnea or anything related to sleeping disorders.

My goal is to have a place where people can connect, offer advice, support, or just be a sound board for people who just need a place to vent. 

My name is Robyn and my husband has been suffering from Sleep Apnea for the past 12 years or more, however it has become more serious since 2005.

Here in Calgary, Sleep Apnea is just being discovered and there isn't a whole lot of information or support to help us.

Sleep Apnea, as some of you may not know,  is a sleeping disorder effecting breathing while a person sleeps.

There are three forms of sleep apnea: central (CSA), obstructive (OSA), and complex or mixed sleep apnea (i.e., a combination of central and obstructive) constituting 0.4%, 84% and 15% of cases respectively. In CSA, breathing is interrupted by a lack of respiratory effort; in OSA, breathing is interrupted by a physical block to airflow despite respiratory effort, and snoring is common.

Usually in any case, an individual with sleep apnea is rarely aware of having difficulty breathing, even upon awakening.  Sleep apnea is recognized as a problem by others witnessing the individual during episodes or is suspected because of its effects on the body.

Symptoms may be present for years (or even decades) without identification, during which time the sufferer may become conditioned to the daytime sleepiness and fatigue associated with significant levels of sleep disturbance.

There are many different types of ways to help control this, surgeries, mouth guards, and lifestyle changes, but mostly they put you on a machine called a c-pap or bi-pap.  This pump air filtered through a mask to help open up the airway allowing you to breath while asleep.

My husband, suffers from Severe Obstructive Sleep Apnea with a mixture of Central too and is presently using the bi-pap machine, it does alleviate his apnea, but even on the highest "air pressure" level he still has apnea throughout the night.

We found out about his apnea when he was rushed to emergency with what the hospital classified it as a "minor" heart attack back in 2005.  I love how they use the word "minor" like it's a scratch or something and to just put a band aide on it to fix it, but regardless of how "minor" it is to them, it did 9% damage on his heart, and that will never heal.  It was during this visit that they did tests only to discover that his arteries were clear and other than being a bit over weight and having high cholesterol, they couldn't understand why he had it at all.  It wasn't until he fell asleep and started to choke and gasp for air that they figured out the problem.

Since then, he has developed Type 2 Diabetes, hypertension, high blood pressure, seizures, and now possibly mini strokes.

When I talk to people about sleep apna, I always hear about how minor it is and how it is more of a nuisance than anything serious like Cancer or Aids, but from what we have experienced it's quite serious.

I have called this post "I'll get enough sleep when I'm dead", because that is exactly what my husband use to say and now it is slowly killing him.  I get really annoyed when I hear people use this saying because they don't realize just how true it really is.

My husband, whom wishes to remain anonymous, is 38 years old and for someone who should be in the prime of his life is instead stuck at home, unable to work because he falls asleep eating, watching TV, talking, and even on the occasion...walking.  I know that some of you are asking how that is possible and you even think that I am exaggerating, but I assure you; I am not.

We are just in the process of meeting with Cardiovascular specialists because a few weeks ago the doctors were certain that he had a minor stroke.  While we were doing the tests to determine the results one of the tests came back saying that while he is asleep, and on his mask, his heart stops for four beats every couple of seconds; so now he will need to get a pacemaker.

I am very grateful for our medical system, as he is on AISH (Assisted Income for the Severe Handicap) they cover all of our medical bills including ambulance.  They also give him a monthly allowance, but base it off of what I make a month.  The problem with this is that I am only able to work so many hours a month and if I go above $900 they start cutting his pay cheque in half, making us rely on the food banks and charity of others.

My biggest challenge is my children, we have been blessed with three beautiful children.  Their ages are 10, 9, and 5.  They are so amazing and try to be as helpful as they can be, especially my 10 year old, she is usually the one keeping the other two occupied and calm while the ambulance takes my husband away. She always seems calm and collective on the outside, however inside she wants to find a quite place and cry.  I commend her bravery and admire her for it, but as we have no support here all I can do is hold her in my arms, rock her back and forth while reassuring her that daddy will be home soon.

Calgary is an amazing city when it comes to organizations that help families of low income.  For Christmas we were adopted by a church that bought my kids new coats, mitts, hats, and scarfs that we would never have been able to afford.  Now that our weather is so cold they skip to school in the morning bundled and warm.

Our church has also been amazing in helping us get through really tough times, we have made some amazing friends and met some amazing people...prayer has definitely helped boost our hope.

My parents are also incredible, without them I think I would have gone completely crazy.  I work at a temp agency and my mom, bless her, is able to take my kids to school in the morning and take care of my husband during the times I am not available, she cooks, cleans and doesn't complain ever while my dad drives us around the city to various appointments as we don't drive...I love them so much I don't know what I would do without them!

God bless family!  :0)