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Health issues coming out of the closet.

  • Posted on March 1, 2012 at 10:28 pm

First of all I want to say I have not done any posts lately due to my health being worse since Christmas. My seizures have been off the wall and I have been dealing with the soles of my feet now having fissures. My pain has been up as well (30 on a 1-10 scale) which just makes every other issue that much worse.

Now too today’s post, which I hope everyone takes something from it.

Health Issues ARE NOT asked for NOR wanted! Society as a whole needs to grow up and start being a bit more understanding when it comes to health issues and others!! This would make the world a much better place and happier place as well!!

Today I had to deal with another person that doesn’t understand Health issues and in fact was being just plain ignorant. This person though it would be fun to them and hurtful to others to tease about a health issue. I have been struggling a long time about doing a blog on this longer than I have about my seizures because people just don’t understand and it is criticized so much.  After today though (thanks to this persons ignorance) I have the courage to talk about it here.  Incontinence isn’t just a health issue that affects the elderly or babies. It can happen to anyone, any age. I have had to wear what they call “Adult diapers” and I truly hate them being called that. To this day just call them Tenas or Depends (both are brand names), using the word “diaper” is part of the problem with the stigmatism. Anyone that knows anything about seizures knows that incontinence comes hand in hand when you have seizures.

The ignorance and intolerance felt by people with disabilities is akin to gays and lesbians in the fact we end up “staying in the closet” with regards to our health in order to avoid ridicule, humiliation, bullying, teasing etc. Well, as you can tell, I’ve had enough and I am no longer afraid to talk and speak up about my health if only in the hopes that it helps teach others and help others not to be afraid of talking about health issues. To make matters worse I also have I.B.S (irritable bowel syndrome) as well as a bladder issue that I have had since I was younger. When I was younger I had to have the opening of my bladder stretched 3 times as it didn’t grow with me. This though has caused the incontinence to be worse over the years instead of better. So, when you put all of that on top of having seizures, having to wear Depends is something I have to live with daily.

For those that have what you may call “embarrassing” health issues, DO NOT be embarrassed. There is no shame in having health issues; it is just a fact of life. With help of true friends and family I have been able to come to terms better with my own health and learn not to hide it. At times I embrace it as it has made me a better person in the fact I do not judge others for any reason. Do I wish I didn’t have these health issues? Of course!! I’d have to be insane not too, but the fact remains I have health issues, I have “disabilities”, but I also now have strength and courage to take the hand I have been dealt and use it to reach out to others and maybe give them a hand to be stronger.

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T.V. show Glee makes light of Epilepsy

  • Posted on February 28, 2012 at 7:08 pm

I’ve had Epilepsy for nearly 40 years and was appalled when a episode of Glee in Feb 2012 did a reference to faking seizures. In a scene trying to stop the wedding of two of the ‘kids’ on the show, the charactor played by Jeff Goldblum made a reference to buying time by faking an Epileptic Seizure.  What made matter worse was the theme of the episode was all about intollernce and acceptance. The moral of the story it seemed was accept others for the way they are, but if they have epilepsy it is still ok to poke fun of seizures. As I’ve stated before Epilepsy is a very serious illness and not one to be taken lightly. In Canada here we are passing a bill for Epilepsy Awareness which I hope some day will make people more aware of how serious it can be.

A lot of people think Epilepsy is a joke as they only see Gran Mal seizures in movies and online. There are over a dozen of high level type seizures with many different forms under that.  I sincerly hope there will be a time when we stop making light of epilepsy and seizures.

I will admit I do/did love the show Glee, but I am now questioning whether or not to continue watching it in light of this episode.

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Health vs Food (Choose Health or Food)

  • Posted on February 4, 2012 at 10:32 pm

I just had to get some cream for my feet that’s not covered under O.D.S.P. and the medication for it was 70.00 and it had to be paid before I could get the medication. I have fissures on the bottom of my feet and they are bleeding and very very sore. There was NO time for getting a doctors letter for a section 8 so I had to pay for the medication out of my O.D.S.P. This in turn doesn’t leave much for my food because I pay 800.00 for rent and only get 1000.00 per month. I am so sick of struggling over things for my health and with not being able to work is very very depressing. I have many health issues and am on many medications. My doctor sent in a section 8 once already for one of the other meds that he wanted to put me on and the government DIDN‘T APPROVE IT therefore he had to find something that isn’t as good. That’s what we get for being disabled.

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DISGUSTED BY HEARING SOMEONE TURNED AWAY BY FOODBANK!!!

  • Posted on January 13, 2012 at 8:13 pm

I have been talking to people lately and have heard some truely AWEFUL THINGS that they have been through!!!!!  I know one personally and they went to a foodbank in Ontario to get help with food for the month and were turned away because they were told that they make too much money.

This person lives alone and is on DISABILITY!!!  This person is on ODSP. Please tell me how in the hell they can be turned away and told that they make too much money on DISABILITY!! I can not believe this. I am going to be doing some research on foodbanks and trying to find out how they can turn a person away that doesn’t waste money on booze, illegal drugs, this person doesn’t spend money on things that they don’t need. They have not gone to foodbanks unless they need to as they know that there are others out there with children that need the food and they just have finally agreed that they need the help. They would rather NOT eat than go to a food bank to take from others and then this happens. This just shows another way that things are screwing the people that need the help and are not getting any help that they need. They finally agree to get more help and get REFUSED.

Please also sign the petition for fixing Disability (ODSP). http://stopthepoverty.com/petitions/raise-the-rates-campaign/

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Smacked in the face again for being DISABLED and HONEST!!!!!!

  • Posted on November 17, 2011 at 10:51 pm

Smacked in the face again for being DISABLED and HONEST!!!!!!

The government has gone too far with restricting peoples meds !!!!!!!No photo I.D. No meds!!! I have found out the HARD way by calling to renew my meds! Finding out , with no previous warning by pharmacy or anything! This card in my opinion should be supplied for people on ODSP!!! Expecially because it is needed for certain meds. I have had O.D.S.P. refuse certain medications as well as items that are needed for my personal health and wellness, that are not covered under the drug plan. This is ridiculous with everything that is going on because yet again the INNOCENT and DISABLED that are TRUTHFUL are the ones being PUNISHED!!! I do not have any photo i.d. and it is very difficult for me to get out to get my meds never mind going downtown to get this card that I need. That is one thing and anyone knows that being on a tight budget, barely making it month to month the money tree out back HAS STOPPED GROWING. I am so discouraged and frusterated and upset with our GOVERNMENT as they have no clue what it is like to live the way people do that are disabled and in our situation.

My thoughts are the people that do the drugs and are addicts are going to get their drugs to feed their habit any way they can and it is going to be the innocent and the people that actually do need the meds that will suffer!!!!

Due to this being a NEW LAW. I have been on the phone with my pharmacy for a couple of days off and on now. The person that runs and is head of the pharmacy knows all my health issues and I just got off the phone yet again from them.(Not the main person) They said they can not release my meds to someone that the perscription does not belong to. I am UNABLE to get over to the pharmacy and the main person at the pharmacy knows this but now we are having another fight on our hands. Can this ever stop with the frusteration and its like if I could get there and get the meds and was fine then I wouldnt need the damn meds in the first place.

I AM SO DISGUSTED WITH THE WAY THINGS ARE RIGHT NOW IT ISNT FUNNY! THE PEOPLE THAT CANT GET OUT TO GET THEIR MEDS AND USUALLY HAVE SOMEONE PICK THEM UP, THE PHARMACY CAN NOT GIVE THEM OUT TO!!!!!!!!

 

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Everyone complained about Glee Episode

  • Posted on November 10, 2011 at 5:27 pm

Everyone complained about Glee Episode

 

I seen the latest episode of Glee and really don’t understand why everyone was so upset about it as I think it was very good showing the teens that there are pro’s and cons to teens having sex. It also had more than the sexual part of it. I found the young lad thats in the wheelchair (Artie Abrams) when he was talking it hit very very close to home. I know it is just a television show but his comments about being in the chair etc. He was explaining that with being in a chair you never feel self sufficient. Well that doesn’t just go for people in wheelchairs, it goes for other health issues as well and he couldn’t have said it better. Sometimes even just little things that you are able to do may not seem like much to others but it is a big deal. He said sometimes people worry about saying the wrong thing etc. and I do know that sometimes my friends don’t know what to say or how to say things but even a simple hello, how are you doing means more than anything. It could be when your having a bad day and it could make more of a difference than anyone realizes.

 

My 4 walls don’t talk to me very much and my cat on the other hand is too mouthy, lol lol, but a friend talking to me even bout the weather or their problems would mean so much sometimes. Sometimes I get told I am a nut, I do joke around a lot, but that is my way of coping with things when I am having rough times, may not be right, but thats how I do it.

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Sentenced to life

  • Posted on November 4, 2011 at 2:15 pm

So, my rent is going up and its due to hydro etc going up so much, the government has to think about this with the people on disability as I have already given up my housephone to try to cut my costs and there is no other way i can cut costs.  I don’t get out and my only social life is the computer and people that I have met online. I talk to my friends this way and if I cut my internet I will not have any social life and this is not fair to people on disability.

I am not just speaking for me but for everyone on disabilitiy that are in the same position as I am that have cut costs every where they can to make things better. I am paying 824.00 now for my rent alone and only get 464.00 as my allowance for rent, anything above that comes out of my liviing expenses. I am not able to walk very far and have other health issues as I have written on my blogs. I have been trying to cope as is and this raising my rent just makes me want to put up my hands and say now what am i going to do.

A lot of people would say well why not move then to a cheaper apartment. What they don’t understand is then I would have to get a moving company to help me move and where am I going to go, and to be able to find a place that is safe and close enough to all the grocery stores, as well as the drug store. I have it right by me because as it is now I can never go out by myself and when I do go out I have to use a walker a lot of the time. I do not expect to have a luxurious life as I know it comes from the government but would like enough money each month to buy groceries and to pay for my expenses. I do not get other personal items covered by the ODSP in which I need as it is. Therefore need to save the money I have to last til the end of the month for special items that I need. I have sent away for samples of things to help me and do use coupons when I can.

I feel at times like I am being punished for being disabled, almost like being in a jail as all I get to see is the same 4 walls. I do have a cat and my cat is an epilepsy awareness cat. I do not have enough money per month to pay my bills and believe me I don’t have anything extravagant, and don’t expect an extravagant lifestyle, but I do think that I should be able to pay my bills and buy enough food to last me a month, as well as my other personal health issues requirements. I would even love to have the other issues added to the drug card as this would help me. I do not spend my money on things that are not needed to live. This month for example, I was looking to get a descent grocery shop as am very low on food. My groceries this month I was only able to spend not even 40.00 for groceries…Now how does that last a month!!!!!!!

I’ve been looking at the food bank, BUT because I cannot get out easily it is not an option as the don’t deliver and for me to get there is not feasible. Let alone also the cost of the TTC to do it, which I have to save every penny I can for travelling to doctor appts which is not a fun time, but that’s another story I will be writing about.

So here I am, sentenced to life.

 

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Government Launches Review of the Registered Disability Savings Plan

  • Posted on November 4, 2011 at 1:26 pm

On Oct 23rd 2011 the Honorable Jim Flaherty announced a Federal review of the RDSP program. In this they have asked for people to comment on it. Below is the email I sent with regards to the RDSP review.

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I am a family member of persons on Ontario Disability. First let me state that I think the RDSP is a great idea but I do and have seen the following issues;

1. A lot of people on disability do not have enough ID for banks to even open an account (seen this with BMO and my cousin). My cousin does not have a drivers license (can’t), does not have a passport, and still has the red/white ohip card. She does not have any form of “legal” photo ID. This needs to be addressed on many government levels. A nationwide government issues photo disability ID needs to be developed.

2. The vast majority of people on disability are afraid of losing or having their provincially provided disability cut for having the RDSP. Even though this would not happen, the government needs to understand one very crucial thing. The workers/staff of things like ODSP go out of their way to make people on disability afraid of being cut-off. This is not an exaggeration as I have seen this first hand with several family members and friends on ODSP. I know my cousin is very scared of opening an RDSP as the prospect of losing her ODSP frightens her to death.

3. People on ODSP for example don’t have money to contribute to RDSP and here is why. For people like my family living in Toronto – (courtesy CHMC Rental Market Reports – 2010)
Average Rent in Toronto
Bachelor Apt – $758/mth
1 Bdrm Apt – $926/mth
ODSP benefits for a single person: $930/month – That includes $464 for shelter.
**As of Jan 2012, my cousins rent for a 1 Bdrm is going up to $824/mth they say due to higher hydro costs etc… YET her ODSP does not increase to cover this. How can that be fair or right?

As you can see people on disability don’t even have enough money to get by each month. This is a MAJOR issue that needs Government attention.

Even though the RDSP is a wonderful thing to have, a lot of people on disability can’t and won’t take advantage of it for several reasons. Disability as a whole needs to be addressed as a National issue. I would request that the Honorable Jim Flaherty look at making Disability a Federal issue to be dealt with and removed from the Provinces. Each province deals with disability differently while the persons in Canada with disability are no different province to province. Our great Country is a Country that prides itself on helping other countries with their impoverished, yet we ignore our own that desperately need our help. Our disabled did not ask to be disabled nor do they wish to be disabled, yet we treat them like some blithe on our system. Unlike Welfare recipients our disabled have no choice BUT to be on assistance as most cannot work anywhere. I would like to put a challenge to our leaders – to ensure all people on disability in all provinces get at the very least the same amount of money as a Minimum Wage 35.5hr/wk worker gets and fix their health care and special diets/needs allowances. Is our government aware that because someone is on disability they are not entitled to the same health care as everyone else? This is backed up in facts, for example, certain meds that would help people in my family lead a more normal life they cannot get because ODSP refuses to cover it.

I applaud Mr. Flaherty for what he is trying to achieve, but I feel there are some glaring fundamental issues that need to be addressed before the RDSP program can work properly.

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Epilepsy Foundation asking everyone to “get seizure smart”

  • Posted on November 1, 2011 at 1:42 pm

Epilepsy Foundation asking everyone to “get seizure smart”.

According to the Epilepsy Foundation, nearly three million people have epilepsy in the United States

 October 26, 2011|Susan Bahorich | Reporter

It’s one of the least understood medical conditions – even though one in three people knows someone who has epilepsy.

According to the Epilepsy Foundation, nearly three million people have epilepsy in the United States, alone. As the foundation kicks off its campaign, it’s asking everyone to “get seizure smart.”

“I would feel disoriented, confused. Like this is not my home. That sort of thing.” For Melissa Bryan, that’s how it started. “The doctor said I was depressed. This is normal. You’re overloaded with things in your life, this is okay. He decided to give me anti-depressants. It didn’t go away. In fact, it got worse.”

Until one day. “I crashed my car in an automobile accident – it’s the first time I had a Grand Mal seizure.”

Bryan was taken to the hospital, where doctors finally discovered she had epilepsy. “I was glad I was going to get a medication that was going to stop all this confusion going on in my head, I wasn’t going crazy.”

These days she controls her epilepsy with medication and hasn’t had a major seizure in years. But she worries about the misconceptions of the disorder. “I think people are afraid or fearful about people who have seizures.”

So, The Epilepsy Foundation is trying to educate the public. “If you saw someone having a seizure would you know what to do? And, in many cases the answer is no,” said Lisa Boylan. “You absolutely, never ever put something in the mouth of a person who is having a seizure. Someone having a seizure will not swallow their tongue it is not possible.”

The Epilepsy Foundation says the best thing to do if someone is having a seizure is to move away any sharp objects or furniture that might be nearby.

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Epilepsy awareness month

  • Posted on November 1, 2011 at 1:33 pm

Today marks the beginning of epilepsy awareness month! What are you doing Today, November 1st, to show your support? Let us know!

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