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Author Topic: My life is forever changed because of my illness  (Read 23412 times)

BooBerrY

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My life is forever changed because of my illness
« on: January 27, 2011, 03:27:05 pm »
Well, where to start.

At a young age i was always the kid that couldn't sit still. Running everywhere ADHD didn't help. But you catch my drift.

At an early age i discovered a talent for hockey, among many other sports. I've played rec hockey, softball, and participated in my highschools marching band. Which i received one of the biggest recognitions of my life. My band (Jackson Memorial HighSchool Band) Was one of 7 chosen to march for George Bush's inaugural parade when he ran for his second term. A very proud moment in my life at only age 14.

As years went by i noticed that things became harder. My body once at the peak of fit became worn down and very sore and achey like i'd run 10 miles a day. After sometime i had to give up everything because it was just too painful, and i had no idea why. Id assumed i pushed myself too hard.

Years have past no straight answer for my pain and suffering until 11/10. I have been diagnosed with Acetabular Dysplasia. The orthopedic specialist did not disclose what this illness was but told me to go home, google it and he'd see me next month. I went home only to have my world shattered.http://www.hipandpelvis.com/patient_education/periace/page1.html Click that link for more information to better understand.

After seeing the specialist's friend the next month, he confirmed what the previous doctor had told me. Acetabular Dysplasia. But this guy, oh boy. Prick puts it lightly. He was rude, insensitive, uninformative, and not helpful. He told me to stop crying, i was over exaggerating and that it's only going to get worse for me and i'm going to need 2 complete joint replacements. But the trick is, i cant have these until im older, and until the pain is so unbearable i cannot go on anymore. He would not give me anything for pain and told me id just end up a drug addict. He got me out of his office as quick as he could and left me feeling destroyed.

Today i decided to get some pain meds because this illness if very painful. My primary today fully explained to me the severity of my illness and told me although surgery will help, it's only temporary. The pain will come back and the joints will eventually give way, and if i take surgery now, i will be in and out of surgery for the rest of my life. He told me that the best thing i can do is pain management by taking Tramadol everyday. He told me that i am one of the luckier ones because my cartilage isn't deteriorating....yet. He shed light for me to better understand, but all in all made me feel worse. More the ever i realize that i will never be the same, ill never excerise again, ill never be as thin as i was, ill never even bear my own child, because my hips will not be able to support the weight let alone child birth. All i want in life is to be a mother, and a wife. Got the wife part, but my dreams for future are shattered. Being a mom, out the door and any other career for that matter. I'm 20 years old. Lost my parents in 5 years. Have no family, and now ive lost my health. All i can say is if i didn't have my husband i don't think i'd still be here.

Christine

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Re: My life is forever changed because of my illness
« Reply #1 on: January 27, 2011, 04:08:08 pm »
oohhhh Boo... Major hugs to you sweety, I am SO very sorry that you are gong thru this...Maybe SSI would be more help to you... this is the place for you, you will find peace and knowledge here.
I was also in the Marching Band near the Bay Area/San Franciso myself..back in the 80s tho..I remember competitions all to well!! We played in Expo, a big thing Canada has...
and I am soo sorry your Drs have treated you so bad :'(
well, we all are here for you and hope we can offer you a soft place to fall..
"Failure isn't in Falling down, but in staying down"

Dragon Fly

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Re: My life is forever changed because of my illness
« Reply #2 on: January 27, 2011, 11:21:10 pm »
Boo....

I first want to thank you for your courage in sharing this with us. I am speechless that you are only 20 years old and having to go through all of this. And I am SO happy that you have your husband by your side to help cope with these huge changes and hurdles in your life.

I know it seems like many facets of your life are "hopeless." But I am wanting for you to see that there is a chance things might work out. Your ability to have children of your own might be challenged, but that doesn't mean you can't be a mommy!! Adoption, egg donation, surrogate mom....there are options for you to explore so that your dream of being a mom might still be a reality.

Regarding the doctor you saw, try to stick his opinions into the cylindrical file. I have had doctors like that and literally wanted to sue for how horrible and mean and rude they were. I realized years later and even more doctors later that there will always be those @**holes who have zero bedside manner and who are "dude's" doctors. So try to remember it's his OPINION. And you are entitled to many, many others.

Regarding pain meds, I totally understand. I hate taking them, but on most days I have to. Let me tell you though, Tramadol has saved my life. It is non-narcotic and does not cause the "drunk" feeling that vicodin and other heavy duty pain pills can. I take it every day and quite frankly I'd be happy to take it til the day I die, because on the days I run out or skip it by mistake, I can hardly walk. I find I am able to still think clearly and not have any sense of hangover feeling. So....if you do try tramadol...keep in mind it is the kinder of the pain meds. Let us know how that goes.

You are so young, and it might seem like life is over. But you ARE young....so there are lots of opportunities for miracles to happen. Try to keep in mind that you have a loving husband, a beautiful heart and spirit and that perhaps there will be silver linings along the way of this journey. Pain makes it really hard to see them. I know this from experience. You never know if a surgery might help you gain some quality of life back. You never know if you are in "training" for helping others with your same disability some day. You never know if there is something to be gained from this experience, other than the bad stuff.

Believe me, I am preaching to no one but myself. I am 37 and have those "my life is over" feelings as well. It is a very hard adjustment and feels like there is no point sometimes. I totally get it. I challenge us both to seek the miracles in daily life and have open minds to the possibilities that are still available to us...we can hear...see....smell...dream...imagine...wonder...laugh...smile...believe....

Much love to you, please keep sharing with us. I am certain that somebody reading this who is too frightened to post is going to benefit from your story and your courage.

>;<
Dragon Fly
"And those who were seen dancing were thought to be insane by those who could not hear the music." --  Friedrich Nietzsche

BooBerrY

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Re: My life is forever changed because of my illness
« Reply #3 on: January 27, 2011, 11:46:27 pm »
Thank you so much you guys for taking the time to read my story. It felt so good to get it off my chest. It feels so good to be welcomed into a place with open arms and understanding. It feels very wonderful to have someone care. I hate to be a pity party but you know what. I have a right to be upset just like anyone that has life altering illnesses. This site so far has given me hope, peace of mind, and joy. I love knowing im not alone and i love knowing that i can come here and read all of your stories to give me strength to keep going.

I dont many of you yet but i love you all thanks so much

se0269

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Re: My life is forever changed because of my illness
« Reply #4 on: January 27, 2011, 11:53:21 pm »
BooBerrY,
Dragon Fly has hit on a point that most members take for granted: The field of science is evolving so fast its hard to keep up, and there is a great change that you hang around you will receive benefit from the scientific research. My sister had ran out of options with her illness/disease and had basically given up and I kept telling her medicine is changing as we knew it, but she had resigned herself to making her peace with God. A new procedure and another option came up as far as treatment for her illness and disease. It is really a pleasure to speak with her now in that I can hear the fight in her and the life in her. We all go down and up in the cycle called dispair, but the most valuable thing in anyones life is to be positive.
We hope to see you around still fighting for whats yours, and when you get what is yours you can focus on feeling better.

Kittyholic

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Re: My life is forever changed because of my illness
« Reply #5 on: January 28, 2011, 04:58:00 am »
Hi Boo:

Your story touched my heart. I learned when I was 18 that I would never have children. I had babysat and cuddled newborns and babies since I was 12 years old, and all of a sudden, my dreams of the white-picket fence with children playing in the front yard were destroyed. I spent years crying every time one of the characters on some silly TV show gave birth; had mixed emotions when my friends started having babies. I wanted to be happy for them, but I was so miserable for myself. I wanted it to be me in that hospital bed with a newborn at my breast. And, when I finally had to have a hysterectomy at age 24, I felt my world had ended. Even though I knew it was impossible, I was able to hold on to a tiny little bit hope. But once I had the hysterectomy, even that little bit of hope was gone.

I know it is an old cliché, but time truly does heal. Eventually the joy for my friends’ overcame my own sense of hopelessness. I became a favorite “aunt” to all of them, and their favorite babysitter. I found other ways to direct the mothering instinct, and believe there are lives I touched that would have gone untouched had my early dreams been fulfilled. You sound like an amazingly strong person, and I have no doubt you will overcome, and many lives will benefit from your touch.

I think I have met your doctor – or at least one very much like him. Chronic pain is a difficult thing for most people to understand. They understand pain, but their only experience with pain is that it eventually goes away. So the concept of unrelenting pain 24/7 for the rest of your life is a concept they can’t begin to grasp. At least most of our friends and family try to understand it. Unfortunately, there are too many doctors who don’t understand it, and have no desire to understand.

And they are the doctors who hesitate to prescribe pain medication because of its addictive qualities. The definition of addiction is ‘being dependent on something’. A diabetic will have a life-time dependency on insulin; a person with high blood pressure will have a life-time dependency on blood pressure medicine; a person with high cholesterol will have a life-time dependency on statins.

And a person with chronic pain will have a life-time dependency on pain medication.

Not many doctors understand this. Have you looked into a Pain Management Center? Maybe your GP could recommend one. At least there you will find doctors who realize they can’t understand unrelenting pain, but want to. And they realize that you will have a life-time dependency on pain medication. Their goal is to help you find one, or a combination, that will give you a better quality of life…

…You deserve it.

Pati
The best way to pay for a lovely moment is to enjoy it. (Richard Bach)

mfd

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Re: My life is forever changed because of my illness
« Reply #6 on: January 28, 2011, 10:52:27 am »
Boo-
Words of wisdom have been spoken very well in these lasts few posts. I can't add much more than to throw in my prayers and support. I too am "addicted to pain meds" in the sense that Patti pointed out. Well said Patti. Pain Management can be a wonderful solution as well. But I will caution from experience that some will be as heartless as that Dr., that you have dealt with. So I would advise to interview these pain management clinics as well. Most Drs., will have PA-C's that you will interact with for the majority of your visits, so make sure that you feel very comfortable as this will more than likely be a long term relationship. If possible, have your husband come along as two heads are better than one. I know one Dr had my wife in tears and she asked me to come with her to the next visit and when we left, she said he was as different as night and day. I am very protective when it comes to my wife and maybe he sensed that, I don't know. I have a feeling that your man stands behind you as well.
God Bless
Mike
For I know the plans I have for you......Jeremiah 29:11-14

BooBerrY

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Re: My life is forever changed because of my illness
« Reply #7 on: January 28, 2011, 01:42:32 pm »
PLG, i think you hit the nail on the head. I don't think i could have said it better. My husbands sister had a child this September, we were pregnant at the same time but my child didn't make it. Now seeing as, let me put this lightly, she does not deserve to have her baby. She and her boyfriend are drug addicts. I remember the day she went into labor my heart just shattered. Her baby was 2 months premature because she abused vicodin in pregnancy. Ever since i can't help but feel hate,envy, and sadness. But that has slowly started to fade and i decided to get a kitten to put my mothering skills into her as well as my husband. It has helped.

MFD, i have not looked into clinics as of yet but i think i might. He has told me that pain management is going to me my number one priority, that and heat therapy. Heat therapy 4 times a day for 45mins per hip is supposed to possibly get blood flowing there and prevent my hips from getting worse. Not heal them but keep them from getting any worse.

Se0269, That is exactly what my doctor was saying. He had said that when he was 27 he had to have a spinal disk surgery and although it helped he wished he had waited. He made points like. Say there are stemcells that can eventually be injected into me to rebuild the bones i dont have in my hip. Things of that sort. I hear it and i understand but sometimes when you're in pain so much for so long you can't think clearly and when you hear that there is a chance for relief is only temporary youre first instinct is to say yes.

Christine

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Re: My life is forever changed because of my illness
« Reply #8 on: January 28, 2011, 04:56:12 pm »
Hi Boo~
are you sure we do not have the same sis in laws? :-X
my sis in law from the Bay Area should honestly have her tubes tied by the state..UGH!!
I hope your new kitten gives you the love you deserve :)
"Failure isn't in Falling down, but in staying down"

BooBerrY

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Re: My life is forever changed because of my illness
« Reply #9 on: January 28, 2011, 05:22:29 pm »
Hi Boo~
are you sure we do not have the same sis in laws? :-X
my sis in law from the Bay Area should honestly have her tubes tied by the state..UGH!!
I hope your new kitten gives you the love you deserve :)


Hahah you'd think lol. I hear that. Just because she was told she may not have kids she thought that ment it was ok not to use protection with anyone.

I'm only like 2 hours from the bay so maybe :P I'm in the Valley.

She does give me love and fiestiness shes growing so fast almost 7 months now and a terror! haha but i love her

Christine

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Re: My life is forever changed because of my illness
« Reply #10 on: January 28, 2011, 05:54:00 pm »
ugh, my sis in law doesnt either..and she is only a couple of years older then you..and has honestly, had at LEAST 7 children so far..now, shes a fugitive in Mexico, having more babies...makes me ill :'(
so glad you got a little kitty, Im a major animal lover myself!
"Failure isn't in Falling down, but in staying down"

BooBerrY

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Re: My life is forever changed because of my illness
« Reply #11 on: January 28, 2011, 06:31:04 pm »
ugh, my sis in law doesnt either..and she is only a couple of years older then you..and has honestly, had at LEAST 7 children so far..now, shes a fugitive in Mexico, having more babies...makes me ill :'(
so glad you got a little kitty, Im a major animal lover myself!
One word, ugh... But you know what animals are whats up. They make the world a little brighter :) My husband and me spoil the hell out of our cat haha. That's her in my Avatar

Christine

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Re: My life is forever changed because of my illness
« Reply #12 on: January 28, 2011, 06:35:14 pm »
yep, honestly, if it wasnt for my animals, I would be alot worse :P
Whats your kittys name?Sooo darn cute:)
Today, is my kitty lilliebelles 8th birthday ;D
"Failure isn't in Falling down, but in staying down"

Dragon Fly

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Re: My life is forever changed because of my illness
« Reply #13 on: January 28, 2011, 07:27:33 pm »
Hey Boo!!

I'm in the Valley too. :)

Love your kitty photo. You are doing all the right things and have a wonderful head on your shoulders and a wonderful man and kitty in your life. Keep that spirit going. I know so much how pain can cloud our thinking. It does mine what seems like all the time. Please keep us posted on how things are going for you.

xoxooxxo,
>;<
Dragon Fly
"And those who were seen dancing were thought to be insane by those who could not hear the music." --  Friedrich Nietzsche

se0269

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Re: My life is forever changed because of my illness
« Reply #14 on: January 28, 2011, 08:52:33 pm »
Boo,
The members have gone over every inch of dirt so theres no sense in going over the very fine points. I will say if a doctor is not considerate and positive stay away and if you find yourself in a relationship with a doctor and you have a gut instinct to move on, move on. Keep us posted and remember there is no need to deal with a rude doctor, unless the DDS sends you to one, and that is no permanent relationship. And if possible do take your husband with you on your physical CE and mental CE if you have them. Your husband will more than likely not be allowed in the exam room, but it sure would be nice to have a shoulder to cry on after the exams. We are praying for you.