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Reality of Disabilities

Apr 19, 2009 - 7 comments

The reality of accepting  my disabilities: I have days when I am somewhat okay with them, but I am sorry to say that does not happen very often.  My hubby is having the same feelings. But I know he is also dealing with the fact that he can't take away the pain, and that things are so different after 36 years together.  And I wish he and our kids did not have to go through this.  But we are a family that loves each other, we will be fine it is just going to take time,love and letting God guide us.

I no longer want my old life back.  When Mike my hubby bought my little red power scooter with our tax refund and we brought it home. I decided it was a sign for new beginnings.  After I got over the shock of finally having my own scooter. Then I realized Shar this does mean you really do have disabilities and as much as I don't want to admit it I know it I need to start learning how to safely get through my days.

This I realize is not going to be an easy, not that it has been easy years ago.  I am scared, very scared I know my health has gotten worse, a lot  more worse. A year ago I did not have to walk with a cane, now I do as well as the power scooter.  My doctor is afraid I could fall again and break something like I did I did last October when I lost my balance and broke my foot.  It is healed mostly, but I can still feel exactly where  it broke.  I don't sit all day, I try to do some light house chores which usually takes me most of the day, Use to take me 2 to 3 hours. I get so tired and that frustrates me.  

My latest health issue is falling asleep anywhere- when I am eating, my hubby could be talking to me, being on the computer.  When it comes to sleeping at night cannot do it and I am suppose to be using my CPAP device for Sleep Apnea.  I am going to try to get an appt. with my IM Dr. he said he would give me cortisone shots in my right knee, I want to talk to him about the sleeping problem, and my chronic pain. He has me on Morphine now but it  wears off early.

This heat is doing me in. I do not do well in the heat. It was 90 today in San Diego. We have a window A/C in our living room.  That helps unless it gets as hot as it did today.

I am thankful to be here, but I still get mad as hell at the car accident I was in 40 yrs ago, it is the cause of all the health problems I have had all these years and now are worse.

I am thankful to have my forum family and all the support, caring I have gotten here. You all have made me feel so safe. I need a safe place that I can be myself, say what I need to say.  My love goes to all of you.  So as one of my friends here has suggested, take baby steps until I am ready to take bigger steps to deal with everything.  So that is what I am trying to do.  Please be patient with me. So Many of you are dealing with much more serious health issues, I admire you all.  All of you are what keep me going.  I have been on my knees a lot lately talking to God and putting my life in his hands as well as my family. And prayers that he will ease all of our pains.  

You all are such a part of my life, and you do help me in many ways which get me through every day of my life. I pray that I help some of you, that is important to me.

Love to all,  Sharj

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585414 tn?1288944902
by ILADVOCATE, Apr 20, 2009
I do understand what you are saying having acquired a physical disability myself that left me homebound. For myself the first thing I did is apply for the supports and services and accomodations that could assist me, a TTY, Access a Ride and am in the process of applying for a home attendant. There are many supports and services out there that people are not aware of. You could find out more at your local independent living center. There's one in every county of every state. Here's a list:
http://www.ilru.org/html/publications/directory/index.html

Avatar universal
by catwoman64, Apr 20, 2009
to reality to disabilities.................... i know what u r saying .. it gets old doesnt it?  i feel for all that has this pain and the other symptoms tht goes long with all of it.  i have a doctors appt. this coming thursday and  if i feel the way i do now i will have to use a wheelchair for the first time!  my doctor wrote out my prescription wrong and it was half of the amount of what i usually get and ive been in alot of pain and i know by thursday i wont be able to walk!  
its hard having others help u when u have alwys helped ur self but... i guess there comes a time where u have to let them help u. i know i shouldnt feel this way but if i would see one of my school friends i would actually feel embarrased and why... i dont know!
aand ILADVOCATE....what is a home attendant ?????  home health aide???  also i live in ohio and i havent heard of a local independent living center... what is it also?????????????  please let me know if u have the time and feel like it... take care and god bless!

                                                                                            catwoman

872994 tn?1247868806
by BARBIE123841, Apr 20, 2009
hi i am new to this site, i can relate to you a lot.if you do not mind me askin what happened to you in the wreck?

Avatar universal
by pporter5, Apr 20, 2009
Wow I'm so over whelmed hearing you talk you speak my language.I was in a car accident 24 years ago that has changed my life.I am now forced to ride a scooter to shop with.I do not have one at home. Although the vibration of the scooter  goes into my chest and causes me much discomfort afterwards.How smooth is your ride?I broke my chest in half by the steering wheel and now am suffering with conchondritis. Ever Hear Of this It has pretty much made me house bound.I also have a chest brace to wear in the car and when I plan to walk more than just in my home..Thank God for the love of my Jesus and family.Because of them I continue to live on this earth.And of course I owe a shout out to Buckeye my rotti and my to cats Cleo and Sassy.Ecclesiastes 9:4-6 declares this for me and anyone elles with the urge to leave this life by your own hand when no hope is left accept with our Lord Jesus Christ.ecc. 4-6 says Anyone who is among the living has hope even a live dog is better off than a dead lion!For the living know that they will die, but the dead know nothing;they have no further reward,and even the memory of them is forgotten.their love, their hate and their jealousy have long since vanished; never again will they have part in anything that happens under the sun.Praise God that I have a savior who tells me these things in the  bible.For I live another day in his abounding grace.2 Corinthians 12:8& 10b says this Three times I pleaded with the Lord to take it away[my pain] from me. But he said  to me,My grace is sufficient for you, for my power is made  perfect in weakness---For when I am weak,then I am made strong.With all my luv  and thanks Kitty You all give me hope.

525545 tn?1293184794
by SharJ, Apr 20, 2009
Hi nice to meet you,

You wanted to know how I got hurt in the car accident.   My Mom, & my 2 little sister went for a  sisters we went for a Sunday drive in the mountain to see the fall leaves.  It was in 1969, the stearring column broke in 1950 Ford and the car fipped over & over  it threw me on to a boulder.  I landed on the boulder head first, the care landed on me.  My Mom's head hit the road every time the car rolled over and she had a tennis ball size hole in her skull,  and my middle sister was thrown from the car, had a head injury and concussion, My baby sister only got a broken arm.  my injuries were multiple skull fracuters, a severe head concussion, (TBI-truamatic Brain injury) I was in a coma for nearly 3 weeks.   I had a black eye for 3 months. I had  to learn how to talk, I had back and neck damage I could not remember how to do math, I had to have others wash my hair because I could not lean my head forward for about a month. Now years later I have a lot of scaring on my brain that has caused me to have my right Temperol lobe that  caused me to have petite grand mal seizures.  And know I have lost the use of a part of the my right Temporal Lobe. My Neurologist  showed the MRI and the area of my brain that is dead.  That was an eye opener.I also have Osteoarthritis in my spine and right knee. I also have Fibromyalgia(and all the symptoms that comes with it)  for the last 20 yrs. with Chronic Pain. So my Internal Medicine Dr. just put me on Morphine for    the pain. I am on over 20 medications.  I hope this has helped you. If I can think of any thing else I will let you know. I have memory problems now also.  

Hugs,
Sharj

585414 tn?1288944902
by ILADVOCATE, Apr 20, 2009
Yes. That does really impact on a person's life. But I know that many states have specific supports and services for people who have a TBI. You might want to look into that. My disability tardive dyskinesia as happens is an uncommon but known long term side effect of some medications. A lot of what I do involves advocating for new treatments that won't cause it but I confine those postings to my journal entries but they have the approval of the providers I work with. As for medications make sure all your doctors know you have a TBI. The specific dosages of medications used and how they are given differs for a TBI than for someone with a psychiatric disability which a TBI is often confused for. This might help:
http://www.braintrauma.org/site/PageServer


572651 tn?1531002957
by Lulu54, Apr 20, 2009
Hi Sharj,
It really touches me to read your words  - do you ever stop and realize how far you have come since you've been here on the MS forum?  I noticed it recently - you are processing your situation in such a positive way, looking for the ways to make it all work for you and your hubby.  I am so proud of you and how you and handling finding your new normal.

Back in 1969 parents didn't strap the kids into safety seats - most of us didn't have our own seat belts.  The accident must have haunted all of your family to this day.  I can't imagine living with those memories.

Thanks for sharing all of your story here - you can tell by the responses you have touched many people today.

Lots of love to you,
Lulu



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