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    Old 01-07-2009, 12:17 AM   #1
    duttin
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    Not a good day--family acceptance

    It's been a long while since I've posted, I use to very active here and on the forum daily.

    So many are new here,I intend to meet.

    Today was my 43rd birthday, a day that came and went.My daughter in the Navy sent me a beuatiful floral arrangement.(the high light of my day)

    My mom calls,it was very heart breaking call---she states I only have a few minutes to say happy birthday,which was fine.

    I've been battling bacterial pneumonia for sometime now.I get to coughing,I'm short of breath and I have a very sore throat.She tells me to get over it and antibiotics is a waste of time.She continue's to yipe(putting it politely) blaming my smoking(not been doing do to the pneumonia) and the portable nebulizing(sp) machine.

    She was on a tanget today,telling me to deal with the pain,my meds are just a crutch and move on.Now mind you,I don't say much about either disease.She continued to go off about the MS and smoking and drinking diet coke caused it.Telling me that seeking the help of a counselor was for the weak and an embarrassment to the family.

    On and on that I have chosen to become depressed and emotional for attention.Everyone gets back medical test back,but they deal with them with out crying (she's referring to a VNG report and the latest MRI reports).

    I called her when the VNG came back with severe ocular motor disorder and the caloric part came back flat lined.The balance cortex of the brain(brain stem and or left cerebral part of the brain) is not responsive.This why I can't walk without falling over.

    The MRI had 52 enhanced micro oval enhanced lesions and several longated black lesions within the spinal cord fluid from the c-spine through the lower thoracic.That day she said she didn't have time to discuss it,she was in a foul mood and hung up.

    My mom is well informed about MS,2 of my sisters are nurses.

    The day gets better,all I wanted for my birthday was to have a sit down dinner with my son and daughter.In walks my ex. he has tuesdays and wensdays off work so he gets the kids these days.He refused to allow my 14 year old daughter have dinner with me and starts in on my 17 year old son about his entitlement to visitation and tried to force my son to go with him.This ends up into a verbal dispute between the two and my son says sorry mom,grabs his wrestling bag and leaves.

    So after I cooked everyones favorite meal, I got to sit here and eat a lone. The one day out of the year that should be mine was a total disaster.

    My sister calls and gives me heck about starting college on thursday,it was the waste of a Pell Grant and how do I deserve it when she has to pay for her daughters college.She goes on about how dare I except it,i'm taking this away from kids that need it and the family bets are that I fail anyway.

    She proceedes to tell me I'm to old to be attending college,why would I and what makes me think that I can be a Social Worker as a major and minoring in disability law and advocating.She's screaming your disabled,visual impaired,your taking grants from others that can acheive these positions when you can't.

    I'm trying to explain to her,it's because of her discrimatory attitude is why we need Social Workers for the disabled.

    Had to call my neuro because of a flair-up that has caused my toes to curl under and become rigid.New to me and it scared the crap out of me,I waited the 48 hours to wait it out.The feet still have a mind of there own,now for the time being I need to wear the leg braces when ever I get up to walk.the feet are flopping against the floor(even with the braces) I sound like a duck when I walk.

    It seems as if my family has gotten attitudes about the diseases,I wouldn't take the arsonal of meds if not needed.Of all days to hear their verbal bull.But my mom and my sister were together all day at my sisters daughters college paying for her books.I'm sure this is where some of this extends from.

    Other than Thanksgiving and Christmas,I have been at home trying to get things done since the house fire last Feb.

    I'm trying to move forward,I ask my GP about seeing a counselor,I needed to deal with the disease progression,my ex finally out of the home(yea).The pain thats never under control.I finally was able to take the time to absorb the structure fire and all the contents being lost(that hit me while decorating a little special tree).That was the first time in 10 months I had time to deal and absorb it all.Between the diseases,the insurance company,contractors and my children,and it hit me like a ton of bricks.I was the only one up and I dealt with it,through a 1000 tears.But now I'm ready to redecorate and bought stuff today for the walls.

    Sorry to vent as many here don't know me,I refuse to let either disease hold me back and my family has honked me off---it gives me more determination than ever.

    They don't realize the more they try to knock me down and keep me there,the more strength I gain to push forward---plus the college has a wonderful disability counselor thats aware of my disabilities and visual problems and has my medical reports from my Drs. and they are going to adapt my laptop next thursday to voice reconition,no one handed typing,books are on tape.

    Thanks for letting me share and vent.

    T-Lynn

     
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    Old 01-07-2009, 04:14 AM   #2
    Pens'nChalk
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    Re: Not a good day--family acceptance

    Hi Dutton,
    Glad to see you've found your way back here - I'm sure others will log on soon to welcome your return. I'm not usually here during the weekdays, but a weather-related school delay gave me this extra hour at home. Serendipity to find you here as well.

    The Pell grant is intended to help those who are willing to seek education, and age is irrelevant. Mr. Pell just passed away this week - bless him for all the help he's made possible for those who don't have the independent resources that so many have.

    College is expensive - parents and students are often hard pressed to come up with all that is needed. But most parents and students retain the physical ability to both work and study.

    You are very deserving, very dedicated, and you've chosen a path that will allow you to share that strength and insight. Bless you, too. And wishing you a strong new year, beginning on this special day for you ~
    __________________
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    Last edited by Pens'nChalk; 01-07-2009 at 04:19 AM. Reason: Happy Birthday!

     
    Old 01-07-2009, 07:05 AM   #3
    unclesam612
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    Re: Not a good day--family acceptance

    Welcome back duttin! your mom sounds like my brother he is all the time telling "toughen up you can deal with a little pain" "it is all those drugs" and this comes from a 44 year old recidivist drug addict. for the life of me I can't understand how these type ppl can sit there and pass judgement on us. I am the only family member that has or has ever had MS but I have those family members that knows all there is to know about the subject. without ever reading a book. It must be those exceptional deductive reasoning skills they have. I tell them not to insult my intelligence by showing there ignorance. 2 words I despise the most is "YOU CAN"T".I always ask the same question "WHY NOT?" just because I have MS that makes me stupid? Granted the physical limits are there but there are always ways around those. I'm glad you came here for a little understanding this is the only place I can go to get any. It is hard for others to understand how a normal looking person could have all these problems.they don't always show. getting chastised is something I have grown used to just like the tingling in my feet.I do the worst thing I keep it inside.I Refuse to let them know they affected me in any way. I quit caring what there opinion is.I still have a few that are there for me but they don't understand really they just listen.truly sorry to read about the fire hope things get better. As far as the ex goes there is a reason they are ex. a social worker for the disabled uh sound like a good thing to me.1 thing your mom said the meds are a crutch. well I believe words mean things they do that for a reason. "crutch" a medical tool when a patient is injured.Didn't sound like you try to get out of normal life that definition does not apply so back to 1.meds are just that a type of crutch to get through the day. it is ok to get down as long as you don't stay that way. find a reason to smile. even laugh out loud for no reason it feels good. even if you have to fake it. not to mention everyone around you will start laughing too.Even if it is at you they are laughing too. spark some laughter it is a good med too.sorry this is so long. I'll keep you in my prayers. Hope things get better

     
    Old 01-07-2009, 07:21 AM   #4
    MSJayhawk
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    Re: Not a good day--family acceptance

    Your family...what can I say...You have been put through stuff that you need not endure. I have a sister who cops a similar attitude to your family. I have chosen not to communicate with her at all. That resolved my problem immediately.

    Pell Grants are income based. Your sister's daughter could get a Pell Grant if she is 18 and "on her own".

    It is always difficult in dealing with family and friends who have not an inkling of the pain of MS. Much of the pain of MS is all too often the pain of rejection and loneliness. It is sad that in this, the 21st century, there is still a fear of MS.

    Bacterial Pneumonia. I was 3 days from the point of no return in the '95. I had a strain of Bacterial Pneumonia that I got somewhere in the jungles of Indonesia or the Philippines. I was confined to a bed for 30 days and it took me 6 months to get my strength back. Regardless of your smoking, anyone can get bacterial pneumonia. I would not wish it on anyone. Your family should understand- sadly they apparently do not.

    Your 17 year old is old enough to reject any visitations as he sees fit. I believe your daughter is too, but I am unaware of Ohio rules. I have a younger sister (not the one I mentioned previously). She deals with visitation issues all the time with her own kids. Her son just turned 13 and no longer goes to each visitation. As long as you do not tear down your ex in front of your kids, your kids will learn the truth about any matter.

    In the face of your pain and suffering, your struggle forward is testimony of your resolve. Your kids can see this and they will grow stronger for it too. I will keep you in my prayers for your immediate and future needs. You are never alone.

     
    Old 01-07-2009, 10:30 AM   #5
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    Re: Not a good day--family acceptance

    Hey Toni. I only have a minute, and this was allot of reading!! Ill check back with your thread later tongiht, but wanted you to know you are on my mind.

    Your family..duh. What a mess. ignore, ignore, ignore and persevere girl friend, you are better then all that. As others have mentioned , the Pell grant is available to just about anyone who qualifies, and even I qualifiied back in my community college days...as for using voice recognition, I did my entire undergrad using it, and went on to be able to type again somwhere in my MBA days....voice recognition is fantastic and I highly recommend Dragon Naturally Speaking....most colleges use it. As for your family member giving you hassle about 'not using the grant" tell them to stop...and stop being ignorant....really, that is almost too much. You have enough to deal wtih.

    Happy Birthday friend...you are loved here. remember that. Ill keep reading your thread and continue sending you positive thoughts.....hang in there and dont let anyone get in your way!
    Nikki
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    Old 01-07-2009, 12:01 PM   #6
    mitch512u
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    Re: Not a good day--family acceptance

    Toni,
    They are your family by the accident of birth. You didn't choose them but you sure as heck can dump them. I used to listen to my parents constant bickering. One day as I visited they started another round of arguing. A light went on in my head: I'm 38 yrs. old, I have my own home, I don't need to listen to this anymore! I informed them that I was leaving, and that if the next time I visited the started that non-sense again, it would be the last time I visited. They never fought in front of me again.

    Its time for you to take control.

    Neil

     
    Old 01-09-2009, 08:55 AM   #7
    wench
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    Re: Not a good day--family acceptance

    duttin,
    I feel a little silly posting as you don't know me, but your post really moved me. I was only on the boards for a little while until my computer crashed last year and I never got it fixed until now, being very busy taking care of my mother.
    I remember you from before with the fire and all, and when I just read this post, I was near tears. It makes me feel horrible you're being treated this way. I'm undiagnosed, but I'm in pain everyday and my family is very supportive(though half the time I think it's because they think I'm crazy!) You on the other hand, actually have a diagnoses and are basically being told to get over it!
    For what it's worth, I'm very proud of you for going back to school and you are an inspiration! Some days just getting out of bed feels like a major accomplishment, and you are embarking on a whole new life! To me, that does sound like someone who is getting over it, in a productive way, by not letting it rule your entire life. I know it's painful, but please don't let your family keep you down. Happy Belated Birthday to you and I can't wait to start reading about how great you're doing in school!

    Patty

     
    Old 01-09-2009, 11:50 AM   #8
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    Re: Not a good day--family acceptance

    Hey, Duttin. Your family is TOXIC to you, and will make your disease worse. Do see a counselor if you can--many communities have free or sliding scale therapists, and your college can probably provide one free of charge (tho my experience with college medical personnel as a whole makes me think it is a job of last resort for many of them--I usually try to steer my v.troubled students to someone good in the community).

    Anyway, nearly my entire family is or has been toxic to me my whole life, with the exception of one brother and his family. My other brother has tried to kill me with a knife (I hit him over the head with a cast-iron skillet and refused to be left alone w.him ever again); my mother was an alcoholic, died of the disease, and made me feel everything wrong with her life was my fault; my father is a rage-o-holic who hasn't spoken to me since my partner had a heart attack about 4 years ago, even though I sent him letters and materials after I was diagnosed w.MS. He has never met his beautiful granddaughters, one finishing a PhD at Princeton and the other an undergrad at Columbia.

    As you might imagine, I've had years of therapy to deal w. all this. Although my mother didn't talk to me for the last 15 years of her life and banned me from her funeral, I have long long since forgiven her. She was a sick woman who couldn't help being the horror she was when drinking. I left the door open for her to re-enter my life, but she chose not to walk through. I am still totally ****** at my father, but have stopped sending mail. There's no point. I think he throws them out unopened. I've been dealing with my feelings about him through a series of "Postcards to My Father", which of course I never send. Sample: "Remember the granddaughter you've never met? She's getting married in July. I don't think you are on the invitation lisy. Signed, you know who." Vents my anger and causes no damage. I invented this on my own, and my therapist thinks it's a great trick.

    So anyway, if you can do like Mitch and just leave or hang up (in a respectful and caring way), or ask them not to question your disease or your college plans, you'll feel a LOT better. I had a student w.progressive MS who took 6 years to finish her degree, getting more and more disabled all the time---but by golly she also held down a work study job at school and graduated with honors in her wheelchair, to the wild applause of a stadium full of people. So you can do ANYTHING if you want to. You go girl!

     
    Old 01-10-2009, 10:41 PM   #9
    duttin
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    Re: Not a good day--family acceptance

    Thanks to all of you,your the greatest.

    I do see a counselor that deals with MS patients,she's awesome.

    Sorry I havn't been back on,I've started my online classes from the local college.What a feat for the computer dumbies,instructions are vague,I think we are mind readers.my 14 year old figured it out.Thank God for kids.

    My vision stinks to say the least,I'll be seeing a low vision specialist soon,so my daughter read the first 2 chapters of my business professionilism to me.

    Plus one chapter of socialogy,she said they were boring.But is willing to help me.She'll defininatly learn something.

    My family can stay away,I didn't ask for 2 incurable diseases.But handle them with grace.

    I refuse to listen to their negativaty anymore, I decided to move forward with my life and they can't except that.

    I decided a few months ago any negativity,I was cleaning out my life,now it's their decision.

    I need to concentrate on getting my life back on track,last year about done me under and I've decided on no more test,they come back devasting and it brings me down(neuro's not happy).

    The MS is progressing and the adheasive arachnoiditis there's nothing they can do but control the pain.But my life doesn't need to stop.

    My family started their crap when I had to start using the canadian arm crutches to keep my balance---duh the balance cortex of my brain is fried due to lesions near the brain stem.

    I've gotta keep a regular schedule now,online classes are very demanding and basically learning on your own.Until I figure it all out I'll check in as often as I can.

    Hope everyone is doing well.

    T

     
    Old 01-11-2009, 10:47 PM   #10
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    Re: Not a good day--family acceptance

    Quote:
    Originally Posted by duttin View Post
    Thanks to all of you,your the greatest.

    I do see a counselor that deals with MS patients,she's awesome.

    Sorry I havn't been back on,I've started my online classes from the local college.What a feat for the computer dumbies,instructions are vague,I think we are mind readers.my 14 year old figured it out.Thank God for kids.

    My vision stinks to say the least,I'll be seeing a low vision specialist soon,so my daughter read the first 2 chapters of my business professionilism to me.

    Plus one chapter of socialogy,she said they were boring.But is willing to help me.She'll defininatly learn something.

    My family can stay away,I didn't ask for 2 incurable diseases.But handle them with grace.

    I refuse to listen to their negativaty anymore, I decided to move forward with my life and they can't except that.

    I decided a few months ago any negativity,I was cleaning out my life,now it's their decision.

    I need to concentrate on getting my life back on track,last year about done me under and I've decided on no more test,they come back devasting and it brings me down(neuro's not happy).

    The MS is progressing and the adheasive arachnoiditis there's nothing they can do but control the pain.But my life doesn't need to stop.

    My family started their crap when I had to start using the canadian arm crutches to keep my balance---duh the balance cortex of my brain is fried due to lesions near the brain stem.

    I've gotta keep a regular schedule now,online classes are very demanding and basically learning on your own.Until I figure it all out I'll check in as often as I can.

    Hope everyone is doing well.

    T
    I am so glad you decided to go back to school! Congratulations for that step of faith. I hope today is a better day for you.

     
    Old 01-13-2009, 04:26 PM   #11
    april1848
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    Re: Not a good day--family acceptance

    Hi Duttin, I remember you and the fire ordeal. You are an inspiration for going through all of this but remaining positive AND going back to school. I come from a similar family backround and it's not easy. It's one of the hardest things I've had to deal with since before I was diagnosed. I keep my contact with these people to a minimum.

    I'm in Ohio too, and in my area, there's a shortage of advocates and counselors who specialize in patients with MS. Good for you for doing that; one person working in this field can help dozens of people find their way and get the rights they deserve. You obviously have a lot of drive, motivation and passion for attaining your degree, so I'm sure you'll succeed.

    I took some college courses, including Sociology, awhile back and I think I gained more from those classes than any other. It really gives you a great advantage in learning human nature, so I'm sure your daughter will benefit. After a few semesters I was asked to tutor in Sociology, which I loved!

    I hope your days get better and your schooling isn't too taxing. I needed to read your post tonite, so thank you. I know you're very busy, but come back when you can!
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    Old 01-20-2009, 08:35 PM   #12
    duttin
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    Re: Not a good day--family acceptance

    Your all an awesome support group,sorry it's taken so long to get back to the forum.
    Started classes and they are all web based and it's a lot of reading and come evening my eyes are so strained the visual quality stinks.

    Come thursday the kurzwell system will be installed on my lap top and all my courses will be on cd's.I can enlarge the print or have the program read to me,right now I choose it reads to me.

    Mt family is still at it,I've come to the conclusion they enjoy causing problems,they are not content unless they have something to complain about.

    I just explained I was doing something for me for a change and they couldn't except it.I was following a compassion of mine and if they are not going to be supportive then leave me alone.

    I live with enough I don't need anymore added to it.

    I hope everyone is doing well/

    T

     
    Old 01-21-2009, 03:53 PM   #13
    april1848
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    Re: Not a good day--family acceptance

    I'm glad you got the equipment you need to making school easier! I think it's awesome that after everything you've been through, plus eye problems and no support---it makes your going to school a thousand times more worth it somehow.

    My family and more often my husband aren't supportive of some things I do because they want to impose limits on me. I do have limitations, but that doesn't mean I still can't do anything. I know my limitations better than anyone else. I've tried things and not succeeded, but I want to try. I've been lucky enough to have succeeded in other things.

    Congratulations on school, and for not letting others get in your way.
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    Old 01-23-2009, 07:34 PM   #14
    LoriAllen
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    Re: Not a good day--family acceptance

    Happy belated birthday!!
    The good news is, I think you were adopted!
    I'm new here, so it's nice to meet you, you sound intelligent, forthright, and determined, while your family members (kids not included) seem to be very narrow minded and selfish.
    I've heard the diet coke thing too. Why is it people feel a need to assign blame to a person who is already dealing with enough? I guess if it's "your" fault because you smoke and drink diet sodas, then they can be absolved of any responsibility regarding your health and happiness. Congrats on starting college. Maybe you could write a paper on how disfunctional people deal with other people's chronic illness, or don't deal with, as the case may be.

     
    Old 01-26-2009, 10:49 PM   #15
    duttin
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    Re: Not a good day--family acceptance

    April,

    The kURZWELL program is awesome,put on a set of head sets,crank the volume,I get one hearing aide Feb2nd and just close my eyes,let the computer read to me.

    I am learning the speech reconizing tool,once this lab top and I get that worked out it won't take 2 hours to type,can only type with my right hand.

    My family is still being stupid,I don't even take their calls right now.

    LoriAllen,welcome to our cyber family a great group here,wish I could be here more often.Once I get a routine down.I'll be back.

     
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