I can't put a description of myself in such a distinct manner right now. I am going through too much at the time but I do want to say that I came to DS to vent and cry and share the trials and tribulations of living my life with cp with others who can truly understand and because I have no one else I can share all this with I sometimes let loose emotionally and am mistaken for an emotional mess but I am not that kind of person in life. I always do my best to try to take hold of my life no matter what it throws my way...and that has been a lot. I also have a lousy family who uses and abuses me when I forget and let my guard down.

Overall, I am seen as a positive, upbeat, good person who has much patience and compassion for others. I receive lots of compliments from people outside of my family and am well liked by all except my family because I am constantly putting my foot down with them and they don't like that.

I am here for laughs and cries and most of all good friends.

I think your a very strong person sis....that's pretty obvious with all your going through!! And working too! Your amazing! Glad your here! Share when you can and when you feel like it:)
Hugs

Hi everyone. I am Jenna, short for Jennifer, but I know too many Jenn's and Jenny's so I came up with Jenna to be a bit different. I am passionate about photography and used to love to read (trying to get back into that one), I love a good movie, I love to laugh and be silly. I am the type of person that would starve and give you my last dollar so that you could eat. I don't get out much because of the CP except to Dr appts and such. I don't have many friends on the oustide, but have made some wonderful friends here at DS. I hope to continue making friends and to receive AND give support at often as I can. My home life, for those that don't know is pretty tumultuous, but I do my best to stay out of the way. I am grateful for all of you and to have you and get to know everyone I don't already know!

Gentle hugs,

Jenna

Hi. I'm lost. I thought everyone's world was full of insanity, but people who talk to me say that my life is not normal. Oh well! I guess then I live in the insane asylum. I have medical challenges that I try to keep from my kids. The hubby only knows some of them.

See my children all have auto-immune diseases and we have spent so much time at hospitals that they think I am on staff at the cafeterias of 3 and give me employee discounts. I told one I was not an employee and she said as much as I live at the hospital I should be. What a journey of fighting doctors to get my children well enough to be in school. I homeschooled a lot of the time. I had blood donors lined up for my son who kept bleeding internally. It is crazy to look at the photo of them that I posted because you would not know that they had any issues. We caught a healthy day and went to the park and they all got in a tree for a photo. My daughter had her first heart attack after that photo and is now 220 pounds and in very bad condition. My 2 sons are in remission and at college. They keep a regular fitness program going supporting each other daily. My oldest son could end up back in a wheel chair if it flares again. He has to work out everyday or his body freezes up. The younger one is a Drill Sargent keeps us all going. My husband had a heart attack and strokes in the middle of all the medical fun. He has had 2 heart surgeries, very successful so far. We own our own businesses so we can cover for each other when needed. Lucky to be married to a man who is in the same business.

I have outlived my family other than my children and hubby. Cancer is a wicked disease, it took all of the females before any of them made it to 62. So there really is no one to talk to around here. None of the people I met through scouting can comprehend 3 kids in the hospital at one time. How can I deal with that and 2 stroke victims at my home. People just walk away afraid the bad luck might rub off!

I have been blessed through the times that I could not cover all of the bases and the Lord sent people from my neighborhood and church to help out. I did not even know they knew we had challenges they just started showing up when things got out of control and I begged God for help.

I guess I just felt all of this was a part of life. It is my life though and I am thankful for what I have. The doctors think I went to med school because I have researched every illness that my kids have had and found ways to help them.

Sadly, I ignored me! I stopped taking my meds because I was out of money and needed my husband to be healthy. I though mine was just pain. My doctor and I really did not talk about me much I had so much on my plate she just said take these pills. Well apparently the main illness flared and attacked the heart, lungs and kidneys. Suddenly I could not walk across the room and continue breathing, I ended up in a wheel chair for months while I tried to get it back under control. Funny I never researched any of my challenges, I was too busy taking care of my family. Now I fight each day to get out of bed and wait for the meds to kick in.

So I am here to find people who understand and don't judge. Find a rope to hang on to and to offer any support that I can. (From my insane asylum) -RJ

i'm a person before my illness. i was a healthy, lively psych SW/therapist in NYC. i left the south and went to an league school there which i mention only b/c my family cut me off for doing so. we never got along anyway. i worked in the psych/medical field and made a life there which is where i consider home. had an abusive, but wealthy childhood, so that was hard to reconcile. i struggled to have relationships with parents and younger sister. i lived in an artsy area of the city, played pool, went to museums and enjoyed all i could visiting them and usually leaving early. when my mother came up for my first cancer surgery she told me i was going to hell, something i'd heard from all them many times.chemo, 2nd surgery, messed up, RSD to die for...

thought i'd found a man who loved me in spite of my limitations, but it wasn't to be. i had a chance to move to puerto rico and had always wanted to do that so i took the chance. was there 6 months and couldn't find a place to live at the end of my lease. asked family for help and got the cold shoulder, so i had to come back to where it all began....i'm a Christian and have been spiritual almost my whole life, so i believe there's a point in this even if it's just to come full circle back to my own personal hell.

have a wonderful cat i adopted after first surg for something to make me smile and has she ever, love photography, film noir, gardening, used to read voraciously, vintage things of all kinds, writing poetry, hard on the outside, mushy on the inside kind of person....

Sis, Jenna, RJ, serenity, and everyone else who is posting on other threads, I just want to say thanks for sharing. I'm glad you felt comfortable sharing your life with us.

After reading, it's amazing and such a blessing to know that all we go through that we have this place to come together and support one another through such trials.

Love & Hugs

a bunch of great women here.

i'm stinke, (actually not smelly), and if you want to know why the nickname, message me and i will let you know..lol
i am the mother of 2, Jessica is 25, and Jake is 20, and i am blessed with some great kids, at least in my standards..lol..
i did go back to work 2 months ago, and its good for the brain, but hard on the body..i was out for 8 years, and im taking a chance at it again, and it scares me to death, because i have a lot to lose if it doesnt work out for me.. but i'm trying to put the pieces back together slowly..
i live with a bunch of normals, except for my mom that passed from breast cancer 11 years ago, so the only place i am understood, and accepted for my disabilities is right here, among all you great people.. and i look forward to sharing my stories with you, and im a great listener as well..
so feel free to message me anytime, day or night..
~stinke~

A bunch of strong women here. I draw strength from each one of your stories of your life. I am looking forward to getting to know you more and sharing more about myself. The common thread I see here is that in the face of adversity of loss, of pain, and misery each one of you remain strong and positive.

I don't think that means anyone has a "game face" on or that there aren't times you might not want to kick the cat (no offense Penny or Dixie's two lovies) just a saying. Sometime even strong women have there moments.I mean that in all that has happened you have survived and given of yourself to others and continue to do that.

love and peace
hippy

you know i didn't think of myself post-CP when i wrote this. i thought of ME. that didn't even dawn on me until now that i had no awareness of that when i was thinking of me. so encouraging to me. i've gotten so used to seeing myself as a person with CP or just as a CPer. i want to work on that more.

I'm Rebecca. I live on a farm in eastern Kentucky with my husband, 10 month old, and 5 year old. We lost our youngest son to SIDS in 2010. My daughter has a rare and often fatal genetic disorder called biotinidase deficiency. Without treatment, it eventually leads to death, usually before the age of 1. Luckily, we caught it soon enough. (It might have been what caused my son to die, but we'll never know because the autopsy did not test for it.) For our own peace of mind, I stay up with her all night and will continue to do this until she's a year old. She has seizures in her sleep and more than once has stopped breathing and had to be recusitated....BUT she is doing great now. She's funny and smart and has a great personality.

I am a full time writer and own my own copywriting business. I do a lot of ghostwriting and technical writing for people. Before that, I was a family therapist, although I have technically been a freelance writer for about 12 years now. I met my husband in Wales when I was attending graduate school. (I got my MA in Religious Experience.) He sold everything and moved to the US to marry me while I was pregnant with our first child. He teaches Anthropology at our local university.

I don't get out a whole lot. I mostly just spend time with my family. In our spare time we enjoy going for drives, finding old abandoned houses to take pictures of, refinishing old furniture, and going to flea markets. My husband is a bigger shopper than I am! :-) Once a year we try to do a really nice vacation somewhere. We used to be into adventure travel (went to Bosnia for the third time when I was pregnant with our first son and had to stay on the pavement to avoid the landmines) but these days we're a little less adventurous. The older I get, the more stars I seem to need in my hotels.

We are a bunch of strong women in this Hen House. All the struggles we face daily and yet we still persevere. Thank you to all of you who have share part of you here on this thread. Reading through has make me understand each of you a little more and reassures me that I am not alone.

Gentle hugs,
Jenna

Bumping for others to read and hoping some more will add their story.

I sure have enjoyed reading them!!!

Hugs

Well Cluckers, I put together some information about me that I would like to share, so if you have a moment, I welcome you to read the following so you can gain some additional insight into my life as a person living with CP. I apologize in advance for it being a bit lengthy. Okay, ALOT lengthy! lol

For starters, I have a difficult time with daily life, and as much as my husband and my 2 children are "supportive" they cannot begin to understand what I am going through with CHRONIC, INTRACTABLE PAIN 24/7. I was hit by a drunk driver when I was 25 yrs old and that was really the beginning of hell for me. I immediately had back and neck problems and for the first several years, it seemed as though chiropractic care helped. I married a wonderful man in May 1996 and approx. 1 yr later, I had to have surgery on my back (L5) for Spondylolesthesis, which included a Laminectomy & Fusion. I had 2 fractures at the base of my spine which was causing my spine to "shift". This was also causing extreme pressure on the nerves to my legs, therefore, by the time I had my surgery (5/97), I was not able to walk or support myself in a standing position. Fortunately, I got the use of my legs back, however, I was in constant, chronic pain afterward. It never went away and I had a really difficult recovery from the surgery.

After 1 full year at home, I reluctantly returned to work and worked my way back up to a Management position. During the following 2 years, we had 2 healthy babies, even though my son was born via an emergency c-section (due to severe toxemia). My husband quit his job to be a stay-at-home Dad while I worked full time to support my family. It was very difficult for me to be at work every day, but I drove 1 hour each way to and from work and knew that my family was counting on me. After 5 yrs of working again, the symptoms in my back and legs began to get worse. I knew something was wrong. Tests confirmed that I had Spinal Stenosis and another surgery would be necessary. My 2nd surgery took place 6/03. My neurosurgeon told me the following day, that he had to "re-do" the first surgery , which was a Fixation and Fusion at L5, had to work on L4 which was where the Stenosis was and he went ahead and worked on L3 which wasn't planned, but he thought I would have future problems with it. He told me at the time that the Stenosis could come back.

I never fully recovered from the 2nd surgery. I was left with chronic dehabilitating pain in my back and my legs. I was told that I have "nerve root entrapment" in my legs which means that scar tissue developed that is putting pressure on the nerves to my legs, causing severe pain & permanent damage. I have also been diagnosed with "failed back syndrome" After trying multiple treatments, including a consultation with the Cleveland Clinic, there isn't anything that can be done for my back or my pain (except medicine). I became permanently disabled at the age of 40 yrs old and life as I knew it no longer existed. If that wasn't enough, on October 31, 2009, I had to have a 3rd surgery because Spinal Stenosis had indeed returned just as my doctor had warned me about.

My meds have changed through the years, however, I am currently on Ms-Contin & Vicodin for my back pain and Neurontin for my leg pain. I took Depression medicine for years, but stopped taking it to save money and wonder if that was a good idea. In the midst of all of this, I have RSD, (which was diagnosed in 1994) bi-laterally in my arms & hands. It was once a force to be reckoned with, however, by the grace of God, the nerve block treatments I received were a huge help. So, for the moment, my RSD is under control and I certainly hope that it stays that way.

In addition to my health issues, I lost my father approx. 7 yrs ago due to diabetes complications and my mother has "abandoned" me because she doesn't know how to cope with my health issues. I was very close to my Father and my Mother and feel that I have lost them both. I really thought my Mother would be there for me no matter what. She has also chosen not to contact my children (her only grandchildren) for the last 3 yrs due to a "falling out" I had with her and her husband (complete bast*rd). I've come to realize that she has made her decision. As hurtful as it is, I have to move forward with my life without her. I have too much going on to allow anyone with "negative energy" to be in my life.

I live with severe chronic pain every minute of every day, confined to a couch or my bed. I cannot do anything physical with my children who are 11 & 13 yrs old, so we usually play games, read books or watch TV from the couch. I've never been able to take them to a movie or go bowling with them, however, I am able to get in the water with them which is a good thing since they love to go swimming. I cannot sit very long nor stand/walk very long (10 minutes maximum) so it really rules out alot of things that I would love to do with Brittany & Brandon. My computer is my "lifeline" to the outside world. I have lost all of my friends, except one, whom I don't get to see very often.

I feel very alone and cry often. I just don't understand why God allows people like me (& others) to suffer so much. I see NO purpose to it, whatsoever. I contemplated suicide after my 1st surgery, however, now that I have kids, I don't think it is something I would ever think of again. I would never CHOOSE to leave my children. I love them way too much.

My hope was to make some friends in this Community, and I feel that I already have, thanks to all of you. All of you understand what I am going through and that means the world to me.

Thank you for taking the time to read this & God Bless!

~Carrie

Wow Carrie, you sure have been through a lot! Thanks so much for taking the time to tell us all about you. You are certainly an admirable woman with all you have been through and all you have managed to accomplish after you initial accident! I'm so sorry you suffer so and I know it must be heart breaking to you at times to not be able to join your kids in more activities. I know I surre feel guilty at times! I'm really glad you found the Hen House and feel so comfortable sharing your story with us. Big loving hugs and cluck:)