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Living with Disease

ScottandDebbie

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[Edit by Ly: This thread was split off from the "Does anyone support" thread. I felt Debbie and I were hijacking the other thread so I split it off.]

Yes, Ly... I have two very *dear* friends who have MS.

In fact.. when we were living in AZ one of these friends was first dx'd with MS. She is only 37 years old, and went into a deep depression after learning her diagnosis. Her husband wasn't very supportive of her. ((( Sad )))

My other friend is a doctor's wife. She has had MS for 20 years and continues to do well.

How are you doing with your MS? How long have you had MS?
 
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Ly&Pigs

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Re: Does anyone support...

How are you doing with your MS? How long have you had MS?
I do fair with it. Haven't had any major exacerbations in 2 years but have minor ones quite frequently, balance issues, eyesight issues, bladder/bowel issues and suffer numbness in my left leg and arm daily. I was officially diagnosed in 1998 but I believe I have had it since I was 16 when I lost the use of my legs for a few days. I will be 40 next month.
 

ScottandDebbie

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Re: Does anyone support...

Balance seems to be a huge issue right now with one of friends, Patricia. She is often accused of being drunk, as she is unable to walk straight. It's been a major blow to her self-esteem. More and more she has been declining to go out for lunch with me because of the strange glances she gets. When we go out to lunch... I always have her hold onto me. People might think we are gay, but a whole lot better than her being singled out.

Ly.. Having MS is a huge life challenge. You have my respect.

Ok.. since you shared with me...
I'll open my black door to you as well.

(I am not off topic folks as this "in the link" is related to supporting charity work that I do. : )

(broken link removed)
 

Ly&Pigs

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Re: Does anyone support...

Kudos to you Debbie for being a breast cancer survivor! I rather like that photo.

Ly.. Having MS is a huge life challenge. You have my respect.
MS is a rather difficult disease to live with and brings daily challenges. I take life one day at a time. Has your friend Patricia ever used a cane? I find a cane helps alot with balance issues. I have been accused of being drunk as well. At least if I am off balance and take my cane along to help steady me, I don't get so many stares and strange looks.
 

ScottandDebbie

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Re: Does anyone support...

Ly&Pigs said:
Kudos to you Debbie for being a breast cancer survivor! I rather like that photo.

Well thank you Ly. I usually don't share that pictures, but what the heck, huh? I had cancer when I was in nursing school. Christa was only little. I didn't want to risk getting it again, and me still needing to raise a disabled child, so I opt'ed for *both* to be removed at the same time.
Just call me "flats"... Hee Hee

Ly&Pigs said:
I take life one day at a time.

The secret to life, isn't it Ly? One day at a time.
On some days I am sure it gets down to you only taking one minute at a time. We learn very quickly what truly is important in life when we goes through hard times, don't we.

Ly&Pigs said:
Has your friend Patricia ever used a cane? I find a cane helps alot with balance issues. I have been accused of being drunk as well. At least if I am off balance and take my cane along to help steady me, I don't get so many stares and strange looks.

Patricia does have a cane, and she also has a wheelchair, but she is having a very difficult time adjusting to the fact that she really has MS.(or maybe it's her husband who is having the difficult time.) It's been two years since she was diagnosed. Her husband prefers that she not talk about it.

There are times when Patricia's speech is very slurred, and she sounds very much like she is drunk... coupled with the staggering gait, it certainly would appear to a stranger that she is drunk. I can hardly tolerate the nasty glances and audible comments when we are out in the public. Oh... it makes me *fighting* mad. Someone passing judgement on another and they have NO idea the underlying reason. It's a far cry between being *drunk* and having a disabling disease such as *MS*. She falls down in her home often. Just three months ago she broke her right foot, and had no other choose but to use the w/c. We went on more outings during those six weeks that the cast was on, and she had so much fun. But once the cast came off... back to wanting to hide again in her house.

Ly... What meds do the doctors have you on. What has worked best for you. Do you have a good support system?
 

Percy's Mom

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Both of you ladies are amazing for being so courageous and living with your respective diseases. It's completely obvious that you both have awesome support networks, including the people here! My hats off to you both!

One of my brother's godmothers (he has 3) has MS, and you are SO right, living each day to it's fullest one day at a time is the ONLY way to go! Kudos to you for all of your hard work.

Debbie - How dare you say that picture of you is awful! I think it's fabulous. You look beautiful, and that hat is outstanding!
 

Ly&Pigs

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We learn very quickly what truly is important in life when we goes through hard times, don't we.
Yes. I used to take so many things for granted, but when living with a disease like MS, you learn you can't take anything for granted. I have days when my legs hurt so much that it's hard to walk, but I don't give up. I have to use my cane quite frequently and I too have had to use a walker or a wheelchair. Last night my son was making fun of me because I can't run anymore. It hurt me so deeply.

Patricia does have a cane, and she also has a wheelchair, but she is having a very difficult time adjusting to the fact that she really has MS.(or maybe it's her husband who is having the difficult time.) It's been two years since she was diagnosed. Her husband prefers that she not talk about it.
The disease won't go away. It's better to talk about it. Her husband doesn't sound as supportive as he should or could be. I had a difficult time when I first was diagnosed, it's hard to deal with a diagnosis such as this.

And as for the slurring of words, I have been there many times. It's not easy to cope with at times. Two years ago I was working bingo for my Veterans Org (AmVets) and I had just finished calling speedie games. All of a sudden, my speech got very slurred, I had a major off balance incident and fell while on the callers stand. The players were ultra supportive and several rushed to see if I was ok. In a way it was embarrassing but I got though it. They called for an ambulance and I went to the hospital. I was in a wheelchair for about 3 days then could manage to use the walker, then my cane, but it took me about 4 months to be able to walk on my own again with no assistance.

I was diagnosed in Texas. I moved back to Arkansas in 2002 and my source of medical treatment is through the VA since I don't have medical insurance. The VA doesn't want to "re-diagnose" me with MS, they don't even want to say that I do have MS even though the MRI points directly to it and shows multiple lesions. I am having problems getting my records from Texas so the VA won't give me any medications except for nortriptyline which helps the nerve pain in my legs some and helps to prevent some of my migraines.

In addition to the MS, I have severe osteoporosis, migraine disorder and am starting to become borderline diabetic.
 

ScottandDebbie

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Ly&Pigs said:
Last night my son was making fun of me because I can't run anymore. It hurt me so deeply.

Ah... That has got to be a killer. Your heart wants to do all the things that "so called" normal people do, but your body just won't let you. I know that has to be so painful for you. Especially when you have children and as parents we always try to put their needs above our's. -- Do I remember correctly, you have two children? How old are they?


Ly&Pigs said:
Her husband doesn't sound as supportive as he should or could be. I had a difficult time when I first was diagnosed, it's hard to deal with a diagnosis such as this.

It is so important to have a supportive person in your life when you are going through rough times. Patricia's husband is "no" support at all? Patricia is a gorgeous woman, and a journalist. She has always been a very strong person in their relationship. I believe that now that she is needing her husband to lean on.... he is feeling rather displaced. He refuses to go to counseling however. My other friend who has MS for over 20 years has so much support from her husband and family, (husband is a surgeon). Both ladies live in the same neighborhood, but what a contrast.


Ly&Pigs said:
And as for the slurring of words, I have been there many times. It's not easy to cope with at times.

I can only *imagine* what it would be like to want to have full command of your body, and it not respond to you properly. The good thing is that you seem to bounce back rather quickly.

Ly&Pigs said:
I am having problems getting my records from Texas so the VA won't give me any medications except for nortriptyline which helps the nerve pain in my legs some and helps to prevent some of my migraines.

The *bureaucracy* in medical, insurance, and government is harmful to the well being of the patients. It can be an uphill struggle in *fighting* for your health rights. It is difficult enough for a person who isn't chronically ill, but the burden on the patients who desperately need help are often the ones who do not have the *strength* to fight. It is very frustrating. I have dealt with this for over 20 years with my daughter and her bone disease. I have organized groups in California to help patients who do not have support people, people who can do the fighting for them.
The system is all messed up. I wish you luck Ly.
My slogan is.... "Scream until you are heard."

Ly&Pigs said:
In addition to the MS, I have severe osteoporosis, migraine disorder and am starting to become borderline diabetic.

Aw Geez Ly. If MS wasn't enough!!!!
You have tried the Sumatrptans, ie. Imitrex, and Zomig?
Zomig is the better of the two. Just make *certain* that you do NOT have a hidden heart condition. I took Zomig and had a cardiac spasm. Four years later, (which was last year) I had to have a heart ablation to correct atrial fibrillation.

What are you going for PT with your MS? Do you find swimming helpful?

Wow... Sorry, this is so long.
 

Ly&Pigs

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I don't get PT (physical therapy) for the MS. I do have zomig for the migraines and it really helps when I get bad ones.

My slogan is.... "Scream until you are heard."
With the VA this is something I feel I have to do. Otherwise you are just another stupid veteran needing treatment. I think it's a very crappy way to treat veterans. I mean after all, it's veterans and active duty/reserve personnel who made/make sure that the people in the US have their freedom. But yet more often than not, we (veterans) get crapped on. I am a veteran of 2 branches of the military.
 

JennG

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I am so proud to know both of you women. I have a cousin who has had a brain anerysum several years ago and suffers from seizures. Her husband was diagnosed with MS after her bout with the anerysum. Luckily, she survied that. One of my best friends 13yr old son died from a brain anerysum (it all depends on where it bursts)

Anyways, I'm glad you both are here and seem to be doing wonderfully!! I think you both look OUTSTANDING!!!! (Yes Ly I've seen what you look like!! ;) )

Anyways, Ly I'm sure if you son knew how much it hurt you when he said that, he would apologize. And if he doesn't I'll come down and kick his :censored: (sorry but I think this is appropriate curse word to use.)

I think it sucks too that we as a people don't support our Veterans like we should. My dad fought in the Vietnam War and doesn't get any respect.
If this helps, I'd like to say thank you to every one who's fought in any war! Without them, we wouldn't have the freedoms we do today.:love:
 
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Ly&Pigs

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Jenn, you are being bad. We do not use curse words like that on the forum. They are not appropriate in any thread or any situation. You should know better. I may have to bonk you on the head. Remember that we have a great many kids/teens on the forum.

Jesse (son) offers me no support at all. Jesse just thinks I am lazy. My parents do give me support and so do some friends.

Speaking of Veterans, Veteran's Day is this coming Friday. I hope you all stop to think about them. I will be taking part in a wreath laying ceremony Friday morning to honor those Veterans who have given their lives in the name of freedom for this country.
 

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*hangs head low* (in a small child-like voice says) yes QHB! I'm so sorry! I won't do it again. *slinks in chair from embarrassment*
 

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Well done, both of you. I know that that is such a hard thing to live with.

Do you call it Veteran's Day in USA? We call it Rememberence Day.
 

ScottandDebbie

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Thank you Magic, Jenn, and Percy.

I am certain that Ly will agree with me when I say...
"It is simply amazing how a person can pull inter strength out of their self when they have to."

When you are dealing with a life changing (or life taking) illnesses a person's value system does a complete change.

I was young when I was diagnosed with breast cancer.
I had a three year old daughter who needed her mother badly to care for her. Christa was a very ill child with a bone disease. Me being disfigured for life wasn't even a concern in my mind at that time. I just wanted to make myself live long enough to see that my daughter had proper medical care. Of course I wanted to beat cancer, but it wasn't my main focus. Raising Christa was my goal. And now I have... She will be 21 years old on Nov. 25th. I made it. : )

I have learned so mush about life.
I have learned what is really important and what isn't.
And I have developed a huge compassion for others who are having difficulty in their lives. And for *little creatures* who need me to care for them. <big grin>

If I could take the cancer back, would I?
I can't honestly say I would be that stoic to say that I wouldn't, but in taking it back I would also be taking back a real life lesson that I could have learned in no other way.

Cancer has shaped me into a person who honestly wants to reach out to others, and hold them to my heart. So... I suppose cancer was a type of loving kindness *growth* for me. : )
 

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I'm going to be rude and jump right in on this thread. To all of those of you who suffer from balance issues and have falling problems from your illness-check into getting a service dog. They have service dogs for exactly those problems. I have a friend with an arachnoid cyst who uses a doberman for her balance issues-the dog helps her stand and sit when she needs it, and she gets support from the dog when she walks. If a dog can provide a necessary service for you, then you are entitled to one, they aren't restricted like handicap tags.

If any of you are interested, I have some links I could send, but they are pretty easy to just find. There are organizations that help pay for or provide trained dogs, and also places that will help you train them yourself if you want to do that.

Sarah
 

ScottandDebbie

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Good Point Sarah.
And you certainly are not being rude.

My daughter has two service dogs.
While she was in training there were a couple people who were training their large dogs to help them with their balancing issues. And several others who had MS.

People can even train a dog their selves.
Here is a link to two books on service dog training.

(broken link removed)

(It just so happens that my daughter is pictured on the first "Teamwork I Training Manual". She was only 11 years old when the picture was taken. Christa is the second from the bottom.)

Excellent input Sarah.
 

ScottandDebbie

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Oops... let me re-enter that site address again.

(broken link removed)

Sorry about that.
 

skirbo

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Service dogs are just amazing. I could get away with having one now from Fibromyalgia and arthritis problems, and will definitely need one eventually.

Mostly the reason I would have one now is to fight the access battles people still sometimes run into... I always like a good fight if I'm on the right side lol.

Sarah
 

ScottandDebbie

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Sarah,

I would like to you to meet Sarabi and Meghan.:)

Sarabi is so smart she even went to college with Christa... lol
 

Ly&Pigs

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The Magic Taco said:
Do you call it Veteran's Day in USA? We call it Rememberence Day.
Yes, it's Veteran's Day in the USA.

AmVets supports "Paws with a Cause" which trains Assistance Dogs nationally for people with disabilities and provides lifetime team support which encourages independence. https://www.pawswithacause.org/

I have seen some of the Paws dogs up close and personal and they are very highly trained. They can pick dimes up off the floor and answer the phone among many other things. Many of the dogs they put through training are rescues from shelters, although only about 1 in 8 successfully complete the training. The dogs that don't complete training are given alternate jobs or are placed with good families. They do have a small breeding program per their website but they state they will continue to rescue dogs whenever possible.

Right now I don't feel the need for an assistance dog. There are so many more people out there that need one much more than I do at this time. My cane helps enough and I don't have balance issues everyday.
 
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