Problems and more problems sigh

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becrhomat
Oct 05, 2016 6:54 pm

Besides getting a colostomy in May, I also have Muscle Tension Dysphonia and am unable to talk.  It gradually appeared about a year and a half ago but I didn't realize (it was very subtle when it started, and I was busy with work and my kids) until february when my voice got really hoarse and 'breathy'.  Luckily, i had a scope that showed no cancer so that's GREAT but it's been 4 months of not being able to talk and I feel so isolated and scared.  They say it's going to return but are unsure when. I have speech therapy once a week but so far there's not much improvement.  I'll soon be sent to a Toronto hospital for more testing.  I'm so frustrated.   I have to rely on others to talk on the phone for me and manage problems, i text to communicate, I'm scared of ventureing too far from home.  I live in a VERY small town and about 1/2 an hour from any resources or decent sized towns.  My faith has always been strong but I've been wondering a lot lately what my purpose in life is.

Ewesful
Oct 05, 2016 11:24 pm

There are many wonderful inventions for you but I don't know the sources in Canada --- you need to email or send letters, knock on doors etc. until someone connects you to disability services,  Do not give up especially if you have children -- you are a model for them of courage and hope -- we never know why we are where/why we are in certain situations but all of a sudden your expwerience is going to be a witness/help/ support to someone....there are always positives - even if sometimes we need to look a little harder to find them.  

Use the internet (library) to learn all you can and hopefully find support groups -- good luck and Iwill be praying for you.

 

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becrhomat
Oct 05, 2016 11:29 pm

Thank you so much!!  

Bill
Oct 06, 2016 5:51 am

Hello becrhomat. Thanks for sharing your problem with us. I have had a look on different sites to try to get some understanding of this condition and it does look promising for a satisfactory outcome. Perhaps your trip to Toronto will be fruitful in this regard.

As for coping in the meantime, Ewesful is right in that these sorts of experiences can be a great motivation for helping others because there is really nothing that qualifies you better to help than if you have been through it yourself. This site is testament to that wiith regard to stomas.

Many years ago, for no apparent reason, I suddenly went blind as I was walking along the street. I struggled home by feeling my way along the hedgerows and fences but had to cross two busy roads which was a nightmare. Eventually I reached home and made my way to bed without telling anyone. (my family have never been very good in the suport sphere) Next morning, all was well and my sight had returned. I never did find out what caused the problem but it was an experience that gave me insight (excuse the pun) into what blind people have to cope with on a daily basis.

Sometimes traumatic experiences are just what we need to get us thinking about how we can be more empathetic and support others. It is good when things right themselves but for some people this does not happen and they have to learn to live with the disability in a somewhat less than empathetic world.

I hope everything comes good in  your own case and you can find a functional use for the experience.

Best wishes

Bill  

becrhomat
Oct 06, 2016 11:35 pm

Thank you.  My speech therapist is looking into the referral process to send me to St. Micheals in Toronto and said she would come with me.  I'm happy about that but in the meantime still feel very isolated.  The town I live in is only 600 people.  I love where I live but there's not much available to me right now when I need it.  It's just all very frustrating.  I know it's eventually going to settle down but I have too many worries and stresses.

 

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becrhomat
Oct 14, 2016 5:00 pm

I am being sent to a Toronto Hospital for more testing and another specialist in another city to have a more in depth scope.  Almost five months now, it's hard to keep my spirits up.

Bill
Oct 15, 2016 7:04 am

At least someone is going to have a look at it for you. Sometimes, doctors will consider that these are things that will clear up on their own given time, so they think they need to do nothing. It is much better to have it examined by specialists, then, if they tell you that it will get better on its own, you can feel much more confident about the advice. However, there is also the opportunity for them to find something that they 'can' do to make it heal up that much quicker. Specialists pride themselves on knowing more than other people and love to experiment with new approaches. By seeing them, you will be getting the benefit of the most up to date knowledge available so lets hope it is useful in your case.

Best wishes

Bill 

Bettyjoe
Oct 17, 2016 2:17 am

yes best wishes and please keep us informed.

becrhomat
Oct 18, 2016 7:14 pm

Change of diagnosis possibly...will find out Nov 2nd....