Posts: 17 Location: Independence, MO Joined: 13.09.08
Posted on 11/02/2008 17:41:51
Hi there!
I wanted to open this thread for those of us who are going through something medically and need someone to talk to about it. Whether it's a high risk pregnancy, heart condition, or an ingrown fingernail even! Join in the chatter and let us remind you that you're not alone in whatever you are going through!
A little over a year ago now, I was like a lot of other moms, I had a part time job while the kids were in school, went through cleaning sprees at home, and was everywhere all the time. That is until I was diagnosed with a rare disorder that is effecting my heart, neurological system, and the system that controlls all the unconscious things your body does like breathe, blink, etc. I also found out I have Fibromyalgia, Chronic Fatigue Syndrome, and possibly Graves Disease. I am doing what I can to keep my mind sharp and my body as healthy as I can... well at least from the parts I can control by behavior and diet at least!
I want to be there for as many others as I can, cause goodness knows I understand all too well the frustration, lonliness, and heartache any medical condition can bring, let alone one that the docs you go to decide for themselves that it's all in your head, passing judgement before giving you half a chance to fully explain the various assorted issues that are plaguing your body. The most important thing I have found out however, is to make sure and remain positive no matter what you are going through. It is something we can individually control, and makes recovery oodles shorter!
May you be blessed with hugs that are pain free and sunshine.
www.butyoudontlooksick.com
I was diagnosed with RA in 1987. I can relate to pain, fatigue etc. I am on Remicade infusions now--one every six weeks and it literally gave me back my life. I believe they use it to treat Fibromyalgia as well so you might ask your doctor. There is a web site called womentowomen.com that has a holistic program that I have been using for a month and it has made a phenomenal difference in my energy level, sleeping problems and menopause symptoms. Check it out. I don't know if it will work for you but it has worked like gang busters for me.
I agree that a positive attitude is 90 percent of it. Good luck and may you find a system that works for you.
Posts: 17 Location: Independence, MO Joined: 13.09.08
Posted on 11/04/2008 10:44:51
Thanks Cher, I will check it out! I have an appointment this afternoon, so I'll ask her about it. I get very suspicious about 'medicine' though; a former doc put me on one that is specifically geared toward Fibro, and not only didn't it work, but when they took me off it I was crazy sick for a month! They did it slowly, the way it's supposed to happen, but I literally couldn't hold anything down for 3 weeks- it was horrible! That's definately something I have learned, is that you need to make sure as a patient, that you do your part in educating yourself on what your symptoms vs. the diagnoses the doctors give you and what medicines they want to put you on.
May you be blessed with hugs that are pain free and sunshine.
www.butyoudontlooksick.com
All of you are very inspiring, positive through all this.
My "condition" is nothing compared to everyone else's, which sort of makes me feel like I'm whining. I have EDNOS.
Posts: 17 Location: Independence, MO Joined: 13.09.08
Posted on 11/13/2008 10:48:26
Please don't feel that any condition no matter how minor is any less troubling or life changing than someone else's. When our lives are made different by a medical condition, it is a big deal because of one simple reason- it's made our lives different. It's up to us as individuals to deal with it the best we can, whether it's having a tantrum and punching pillows, yelling at walls, crying, laughing about it, or looking for something positive in the whole situation. All of those I might add, I have done throughout my journey of trying to find out what is wrong with my body. I learned from my mother, who was plagued by illnesses for the last 15 years of her life, that no matter what you are going through, if you do your best to stay positive and find some way to look on the bright side of it, that not only will you feel better emotionally, but you can help the healing process by leaps and bounds. For example, on my worst pain days where I'm pretty much bedridden, I find comfort in the thought that at least I have been given another day where I was able to wake up at all, and have more time with my husband and kids. I'm not going to sit here and tell you that my life is all rainbows and roses and that I never get down, but it sure helps me personally to not dwell on the bad stuff! I think that's another reason I started this thread. We all go through things, and it sure does help to talk about it. If we get it off our chest, it's much easier to deal with it, and we can feel that we're not alone.
May you be blessed with hugs that are pain free and sunshine.
www.butyoudontlooksick.com
You're so happy and positive and inspiring, Isaree! =]
I've never been diagnosed...technically. It's not like I want to go and submit myself to be prodded and analyzed by doctors. And I don't look ill at all... I guess... which is why the topic doesn't come up with family, friends, etc.
Posts: 7 Location: South Carolina Joined: 11.10.08
Posted on 11/13/2008 11:00:54
Don't under rate what you are going thru. anything that alters your lifestyle and causes you pain and sickness can be devastating. I have had numerous surgeries etc for what sounds so simple...kidney stones.. I had a stone that completly filled and shut down a kidney. I was extremely weak and had become so adjusted to the misery, I didn't realize I would die from this. It is better after having PCN's (holes drilled in my back to gain entry into the kidney) but not gone. I can't plan because the pain and infections come without warning. It has consumed my life. I am considering having the kidney removed and hoping that this doesn't move into the other kidney. Four years of this and I am still amazed how ill you can become when the plumbing isn't working right. You ladies seem so strong and positive,but I know you have felt betrayed by your own bodies. I feel sorry for the children who have to deal with our ups and downs.
Posts: 17 Location: Independence, MO Joined: 13.09.08
Posted on 11/13/2008 11:40:58
I agree with Sissy Ivana, I know all too well that no one wants to go through that dreaded 'guinea pig' process, but like Sissy said, it's a very necessary evil sometimes. And unfortunately, what is probally making things complicated, is that you don't look sick. I don't know how many times I have heard that, and been accused by doctors, friends, and family members alike that there is nothing wrong with me and I'm 'faking it' because to look at me, you can't tell anything is wrong. I urge you to go to the site in my signature and read Yhe Spoon Theory. It does an absolutely FANTASTIC job of explaining not only to those who suffer from but to those who don't understand the challenges of those tricky things we call 'invisible diseases'. There are thousands of people out there that may not 'look' sick on the ouside, but are really suffering on the inside. Plus, that site is a fantastic resource for new studies, straight talk on medicines that others have been on and have gone through side effects, etc. Sissy, I am glad you are on the road to recovery! My grandmother went through ignoring symptoms also, and when she finally did go to the doc, she found out that she had colon cancer that had spread to her lymph nodes and died 6 months after finding out. Please, if you all are having issues that you think is 'nothing', go have them looked at while it could still be something simple to take care of! The earlier something is found, the better your chances are of getting through it! I also wanted to mention that if anyone needs someone to listen but might not feel completely comfortable posting it in open forum, please feel free to pm me- I am not a doctor by any stretch of the imagination, but I can sure listen with an ear that has been through a lot and understanding of what you may be going through!
May you be blessed with hugs that are pain free and sunshine.
www.butyoudontlooksick.com
I don't know, it feels weird. It's a little bit like: I don't want people to know I have this "disorder" and if I don't look emaciated and people don't talk about it, then all the better for me.
But then if I tell people about it, they're not going to believe me. I will look like I'm vying for attention which is the FURTHEST thing. OR... they will treat me like a helpless person.
Posts: 17 Location: Independence, MO Joined: 13.09.08
Posted on 11/13/2008 12:37:33
I want to share something I have learned through my personal experience with all that has gone on with my body. The first thing we need to do is quit caring what anyone else will think. If I had a dime for every time I have been told by a doctor that since labwork, xrays, MRIs, etc. came up normal, that there was nothing wrong with me, I would be an extremely rich woman. No one on earth knows what you are going through BUT you, and please don't let anyone tell you how to feel or what you feel. I completely understand that you don't want people to know, and yet you do at the same time. I am not going to lie, and tell you that my life is the same as it was before, I have lost more friends than I can count. But you know what? I am thankful for it! Sounds crazy, right? Think about it this way... before I got sick, I had a pretty typical life. I was working at a job I loved, I had lots of friends, and my husband and I went out with friends about twice a month. Since then, I am no longer able to work which gives me more time to spend with my kids, and I have found out who my real friends are. With all that is going on with me, I would much rather spend my time and energy being around people that are going to be supportive and positive than people who are going to bring me down. As for being treated like you are helpless, the most important thing to remember is that you know you aren't helpless, and if you don't let others treat you that way, they will begin to realize that too.
May you be blessed with hugs that are pain free and sunshine.
www.butyoudontlooksick.com
You're right. I do but I don't.
And you're right a second time. I really should not care. I just don't want to be treated any differently--better or worse.
Posts: 17 Location: Independence, MO Joined: 13.09.08
Posted on 11/13/2008 20:46:33
You know, it's taken me getting sick to learn that lesson. I was brought up with believing that no matter what was going on at home, our public persona is one of perfection. So breaking myself of the habit of putting others' opinions before my own personal happiness has been quite the chore. However since I was able to break that habit, I've been a much happier and carefree person! I know you don't want to be treated differently, and another lesson I've learned is that controlling how others treat you is a lot easier to do than you think. When someone starts doing it, 90% of the time if you simply say you appreciate them wanting to be sympathetic, but the best thing they can do is treat you like they would anyone else they will do so.
May you be blessed with hugs that are pain free and sunshine.
www.butyoudontlooksick.com
Wow, just saw this. I have a bunch of medical problems and am on Social Security for them. I have fibromyalgia, chronic fatigue, myofacial pain syndrome, COPD, asthma, GERD, well alot of things. My back has 2 ruptured discs, I could go on and on but it'd be too boring. This all stems from a pregnancy 15 yrs ago that almost killed me. I wish I had the attitude some of you have. Mine sucks. I try to stay positive and would probably do better if I was positive but I get so down about it sometimes. Such is life.
"They say it is better to be poor and happy than rich and miserable, but how about a compromise like moderately rich and just moody?"
Posts: 17 Location: Independence, MO Joined: 13.09.08
Posted on 11/16/2008 18:38:59
Hi littlequeenie I'm glad you posted! I know it's difficult to stay positive, and Lord knows I'm not always positive, but I was lucky to have a fantastic example to learn from in my mother. She showed me how powerful stying positive can be. If you need to vent, please feel free to- it definately helps out too!
May you be blessed with hugs that are pain free and sunshine.
www.butyoudontlooksick.com
Isaree, I can TOTALLY agree with the way you were brought up. I was brought up the same way. Even if you've just trudged through the Amazon jungle, been bitten by snakes and mosquitos, kidnapped by wild pigmy head hunters, slow roasted over a pit then forced to swim through leech infested waters, one should always say, Everything is perfect. I'm fine. My life is wonderful.
Posts: 17 Location: Independence, MO Joined: 13.09.08
Posted on 11/18/2008 18:26:39
Thanks for the giggle Cher, it definately helped today! Yeah, unfortunately, it's not the best of situations to handle, but I do have to say it's helped me keep a positive light on things. I am just glad that I have since then learned that it's not the right way to handle things in general.
May you be blessed with hugs that are pain free and sunshine.
www.butyoudontlooksick.com
Posts: 21 Location: Mt Pleasant, MI Joined: 14.12.08
Posted on 12/15/2008 02:30:49
Ivana, I used to have EDNOS too, and I understand completely how you feel. Now though, I have so many other medical miseries that eating just seems trivial to me, lol. My main problems are depression and migraines. I first developed depression almost nine years ago, as ppd after the birth of my third baby, and it never went away. It's been so bad at times (even with the medicine I take) that I've actually been bed-bound, too depressed and anxious to even get up, it's horrible. The migraines I've had for years, but just in the past couple of years they've gotten so bad that sometimes I have them daily. Not a good condition for someone who has zero tolerance for pain, lol. I take Inderal daily to prevent them, but it's only partially effective, so then I have to resort to taking percocet to get rid of the pain. All in all, I'm really quite useless around here, lol. My 16 year old daughter does most of the housework, and my husband the cooking. One thing I'm good at though is cuddling with my 4 year old, and he really loves that. I just wish I had more "normal" days though. Maybe someday.
Today,is a good morning for me. Today,I eat the tiger and I AM BLESSED.Tomorrow,the tiger may eat me,but I'm still BLESSED.Any day that I wake up and can dare the tiger, is a BLESSING. I dare him to call me weak,lame,crippled or sore.I AM NOT his prey and he cannot devour me without a mighty fight. I will not let him RULE me,I AM strong and therefore,I AM BLESSED.The TIGER's name is PAIN.
When anyone asks me,"How are you today?" I always reply that I AM BLESSED. I am indeed blessed,because God,Almighty has given me yet another day to dare the tiger and I AM THANKFUL.
In 1972, I was 21 years old and I was on my way home from work.I had not been home in several days.I was a resident at a local county hospital and we were very busy,it always is between the holidays.It was November 28th.I'd missed Thanksgiving with my family and it looked like I would miss Christmas too.I would stay in the residents quarters and eat in the cafeteria,because it was easier.My husband wanted to divorce me,because I was never home and he was in the Army,slated to go back overseas.the war in Viet Nam was still going strong.So our marriage of one year was dying.
I was 1 1/2 miles from my parents house,where I was staying when I could go home.I had just made my exit and was waiting for the light to change,so I could make my left turn.I averted my eyes,long enough to light a cigarette.When I looked up,it was just in time to see a very large truck collide with my car and sent me rolling side over side down an embankment and on to another freeway.I landed upside down.Another unsuspecting truck hit my car and sent it spinning down the road.I was awake,but couldn't see anything and couldn't reach out and turn the motor off.I could hear the motor running and the sound of my blood dripping.I lost my cigarette,damn.
When the fire department and the ambulance got there,I felt no pain and my mind was alert,but I couldn't speak.I was the first person that the jaws of life,was used to extract a person from a wrecked car.The first voice I heard was a fireman's who said,"We have one victim in here,it looks like a casualty" and I thought to myself that I must be dead,I can't see any bright light and there's no angels singing.He reached in and turned the key to turn off the engine.He spoke to me,but I couldn't answer him.I felt hands touching me and holding me up while he cut my seatbelt,to get me out of the car.My poor car,it was my first new car.I worked long hours and scrimped and saved to buy it and I was so proud of it.It was a Renault and I'd bought it off the showroom floor.
I heard several voices,but they sounded more like bees buzzing than humans.I felt them trying to get my pulse,on the side of my neck.One man said,"she looks more dead than alive,do I keep trying?" I heard another voice say,"She's losing alot of blood.Hook her up and let's get her out of here.ASAP." I just felt cold and sleepy. As soon as they put me in the back of the wagon and pulled away,I heard my car blow up.I went to sleep.
When I woke up,I was in the emergency room and I was cold.I couldn't see anything,just blurs of light, and damn,I was cold,so cold.The next voice I heard was a man telling me how lucky I was and I almost laughed,but no sound came out.I felt strangely fuzzy.I went back to sleep.
Three months later,I woke up.The doctor told me to be calm.He would explain everything to me in a little while,but he had to do a couple of things first.Another man walked up and held my hand.He said,"I thought you were dead,you looked like a broken doll that someone threw away.I almost called you (a DOA),then I saw you blink your eyes,big green eyes. and I knew that you were alive.We fought to keep you alive."
The doctor came back and began to tell me everything that was wrong with me,I had detached both retinaes upon impact.My jaw was crushed,my nose was crushed,my left cheekbone was crushed,my neck was broken,my back was broken,both legs were broken,both arms were broken,my ribs were broken and I had a machine that was breathing for me,but I was alive.I had tubes in me everywhere,putting fluids in and taking fluids out.They had decided that my injuries were so severe that they put me in a drug-induced coma for 3 months,to let my body begin to heal.I had weights attached to both legs (traction) and casts on them and my back was in a body cast.Both arms were in casts and I itched all over,but couldn't scratch.Then I went back to sleep.
When I awoke several hours later,another doctor came in and told me that as soon as I could be moved,they would send me to my hospital,where I would be among my friends and associates.It was going to be a long healing process and I would need them all.They did transfer me,a month later,in the back of another ambulance.Then the hard part started.
It took three hospitals,4 years and 27 surgeries to put me back together again.I am the original 6 million dollar woMan,but I am alive and I am thankful.There are days,still,when I feel pain in every part of my body and I'm thankful,dead people feel no pain and I want to be alive.I am blessed.
I've survived breast cancer in 2001 and double pneumonia in 2007.I AM BLESSED.I AM REALLY BLESSED.
Just a short note,My story is true,it's as abbreviated as I could make it.To quote an old friend,"The hardest thing in life,is to keep on living.When you hurt,when you're sad,when you're afraid or when everyone you love has gone away.God made you alive and He has a purpose for your life,it's up to you to find it and He won't let you leave this world until you do."
