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Jan 30, 2015 5:38 PM

I don't know if any of you are comfortable doing this. But I see your profile names and your kind comments in support of me and others but sometimes I would like to know a little more about the person behind that profile name. So what I was thinking. Is maybe for us new people, all of us could introduce ourselves, tell us about what state or country we are from, what are pain is caused by, what we used to do as in employment or in caring for a home, maybe some of the things we wish we could do if it wasn't for these limitations. I don't think anybody ever ask us what we want to be doing with our lives. Maybe we could tell about are family structure and if you feel supported by them. I wasn't thinking like we talk bad about our families but about how do we feel we get any support from them. It would help know more about each other and how we can be there for each other. These are just some ideas. I am not trying to get anyone to share anything they don't want. I just thought it would be nice to put an emotional and factual face behind these kind and caring people who have been there for me. I thought maybe it could be a way for us to know each other better and maybe be supportive based on what we know about you. Don't get me wrong. I love the support that I get now. I just want to be there as best I can by getting to know you all. I don't want to ask anybody to share anything they are not comfortable with or to share anything if they don't want to. I really hope I don't offend anyone by asking to do this. It is just an idea.

If anyone wants to do this fine. I will go since I suggested it. I am profiler. I am 45 years old tommorow. That makes me sad. I wanted to do more with my life by that age. I became disabled by fallIng off a ladder 20 ft. That was the most traumatic event in my life thus far. It took my foot off. Correction, it took most of it off most of it off except the important part that kept me from bleeding out. The vein stayed connected and a tiny amount of skin. It took 8 surgeries to get my foot to finally connect. In the end, they did an arthrodesis so I am not able to bend my ankle or foot and I immediate had arthritis a month later. Because they had to debri a little bone each time they did another surgery, I lost an inch of my leg. Because of my fall, after the ankle snapped off, I landed on my back and couldn't sit for two or three months. The pain I had if I slightly sat on my butt was a seven and would jolt my whole body. They said my back was fine. That I had no reason for pain. I told them they were missing something. They didn't do MRI. Oh yea, they couldn't, they installed metal hardware in my leg and foot. At the time, I had my own business called Clear View Window Cleaners and a sales job with Cellular One. I loved both jobs for different reasons. I had the business first. I liked it because is liked selling our service. I thought everyone needed their windows cleaned and most people hate it. Having them done professionally is such a difference in how clean your window looks. Plus it is a real treat to the customer. They feel spoiled for not having to do it themselves. I loved the end of the job. Not the part of getting paid even though I liked that. But I loved the part when the customer looked out the window and they were so happy. They would say things like they have never looked so clean. But I liked when they would say that they were never able to see the colors of the outside world the way they do with the cleaned windows. And it looked like it was going to add to their job. You felt like you just improved their outlook in life. I know that sounds silly but that is the way. But that is the way they acted. Then I loved my cellular job because I think it is an awesome product to sell. I could never sell something I don't believe is good or honest. A lot of the other sales reps just sold the phones by saying they had service in these counties. But in the area I lived, there was a lot of dead areas. The others would not mention it but before I let them sign a contract, I let them know where they didn't have service but I usually sold them because I told them most people don't get phones for using around their phones but when they travel. Because I was known for being honest, I was the top salesman. I am sorry if that doesn't sound humble. I was just pointing out the reason. It wasn't me. It was because I didn't tell them something untrue diliberately. So, I guess my success in theses jobs brought me much joy in my life. I continued working after the accident because I didn't want to displease or disappoint my boss. I was addicted to being appreciated. I have never had a job where I wasn't appreciated as a hard worker. I was flexible and would learn every position. I would work someplace and then when they would don't longer appreciate me I would move onto another job. Like I said I was addicted to being appreciated. I always needed to be approved them since I never got to my parents. But then it came to a point that I realize that I could no longer work because I could not handle the pain of working. So I just stopped and when I'm disability. I really regret that decision. I feel since then everything has gone downhill. Since then, my house is gone downhill.

Besides feeling successful in my job. The other success that I have had is in my family. I have come from a broken family. My father was abusive with me when he was not with the other children. I think that is why I have felt like a bad Person on my life. But I took everything that I did not have in my family, and I change that. And I gave my family everything that I did not have. I shower them with love. I feel my children are my large success. I have praise them and love them and respect them. They have grown up feeling good about themselves and knowing that they have been loved. I think that is a real hard job as a parent. It seems there is so many hardships on children when it comes to those around them. So many precious put up on them. So many people can make them feel bad about themselves. My sister was sexually abused twice while she was living in our home when we were children. I vowed to protect my children from that so that they would not turn out as destructive as my sister had and hated herself the way she has. It was really hard but I am happy that my children love themselves. And most of all. I have taught them to love God. I have taught them to think about how they make him feel with the decisions they make and the action to take.

My family is very supportive of me when it comes to my illness and pain. While I don't think that they are there for me emotionally, they are there for me physically. My children are very concerned about me whenever I am not aware of things. Because of my pain medicine and my sleep apnea, there are times that I am not aware of my surroundings and behave like I'm drunk. During this times while standing up. This concerns my children very much. They are constantly making sure that I am awake. If I am not, they make sure that I get to bed. During those times, I will wake up and try to get to the bed but fall asleep before I get there. So they make sure that I do in fact get into the bed. They drive me to my appointments when I need help. My wife will practically not let me do anything. I don't like that sometimes. There are many times that she doesn't feel good. I don't like that she puts my bad health above her own. I was never one who wanted to be first place in someone's life. I always wanted to put other people first. So it is hard for me to be taken care of. Especially since I've taken care of her and helped her a good many years when she suffered severe depression and was unable to do the daily things of life.

I would like to now try to move forward and get past this agoraphobia. I would like to go outside on a regular basis and visit nature and go take pictures. I have always wanted to write a book. A Mystery novel. I do think I have the ability. But the one thing that is really important to me, I would like to get back to church. I would like to yep back and see my friends. And most of all to have an active share and worshiping my God. I miss that. I miss the public discourses. It is something that would make me feel good about myself. Those of the things I would like to you again and to do those new goals. So that is a little bit about me. Actually this is a book. I hope I have a shared things about me so that you know me better. I hope it doesn't turn you off. I don't think I'm a great person. According to my mother, and in her will, she said that I was incapable of love. So maybe that is what is wrong with me. But at least you all like me so far. I'll try to keep it that way. No matter how much it's not me. Take care guys

Jan 30, 2015 7:14 PM

Dear Profiler, you've got to know your mother was wrong. If your kids and wife treat you so lovingly, it is obviously you have showered them with the same kind of warm and loving feelings. I think it's a great idea to write about ourselves. I will write about myself another time as my neck, shoulder and fingers hurt when I type a lot so I have to time it just right.

Jan 30, 2015 8:54 PM

OK here is a little bit about me. The name is Jay, I live in Illinois. I'm 37 years old and and my problems started around the end of July this last year. It started with pain in both arms and both legs. Since July 31st I have not gone a day without pain somewhere in my body. About a month and a half into all this started the headaches that I had never experienced before and I feel sorry for anyone that has them. All kinds of testing has been done with inconclusive results, which is why I believe 2 of the doctors are going with fibro and possibly chronic fatigue. So as of now they are just waiting to see if all the meds they have me on will start helping.

Before this started I was working as an avionics tech, working on wiring and electronic components in private jets and small planes. I really liked my job and would have to say it was the best job I had since getting out of the Air Force in 1999. Having memory issues and concentration problems on top of the pain make me feel unreliable to be able to do that job at this time.

I am married with 2 step daughters and a 3 year old daughter. Which is why I probably a little more depressed than I should be. I say that because not knowing what is in store for me for the future and not being at my job to support them brings me down.

I used to be very competitive and play softball and bowl. Now a days I lucky if I don't run out of energy walking around the grocery store. Even taking my daughter trick or treating did me in for the next day. It's hard telling kids that are 7,6, and 3, I can't do that right now cause I hurt and have no energy. So I end up over doing things more often then I should.

I have found some support in small veterans groups and some good friends that understand a little of what I am going thru. So I try and stay positive, which at times is really hard to do. I just keep hoping that some day the meds or something will help.

If anyone wants to know more just ask.

Jan 30, 2015 9:37 PM

Profiler, you are a wonderful, caring person. Your mother was cruel to say what she did, and even if she saw it that way, you were probably reserved and afraid to open up to your family (from what you said they were like). There is such a thing as "tough love" that looks like cold & uncaring to those who want to take advantage of you. Trust me, I've been there too, in a dysfunctional family. But its in the past and that's where I leave it to stay healthy...mind, body, & soul. I will write on myself later, as my migraine still isn't cleared up. Your family you created loves you, so realize that you should love yourself. Though none of us are where we thought or hoped we would be, "there is a time & season for all things"... We just have to accept ourselves as we are now, and really search within for what we do have to give others, and every one has more to give, mental, physical & spiritual support. God bless you!

Jan 31, 2015 10:00 AM

Sorry Flappys, migrains are awful. So I have a few minutes that I thought I'd introduce myself a bit. Guess where I live!? Yep, Oregon! Lol I live in central Oregon in a very small town that I grew up in. We are about 2 hours from portland. I'm 53 married to a hard working logger with two sons and three daughters the oldest of which is 32 and the youngest is 16. I have been a Head Start pre- k teacher/ home visitor & family health advocate for 13 years. Due to federal regulations I went to college and earned my degree late in life, graduating in 2010. I was injured in January 2014 by a special needs child with a back sprain. Now I'm a farm girl, very strong back my whole life yet for whatever reason ( I'm thinking age) it won't heal. Consequently I have been on and off of work the last year. I also suffered a skull fracture 7 years ago which was on top of about 4 concussions and preceded 3 more concussions. This has left me susceptible to barometric migraines. In December I was released with minimal work restrictions yet my emoter will not allow me to return to work unless I'm 100%! I fear this is my career slipping away. The organization I work for I think is in the process of clearing out the old to make room for the new which is evident as they hired a "long term sub" who quit a full time job to take this position. Anyway, my life is currently a huge mess. But I have a great family and some amazing friends who know how this job issue hurts me. I create strong ties with many families and have worked very hard to build a " model" classroom only to see a newbie site coordinator totally wiping the history of our site away. I wish my sub all the best yet my classroom will be trying to run with TWO green teachers.

Jan 31, 2015 1:58 PM

Hi, Profiler. I am so glad you thought to do this. I really like getting to know people who are in situations very similar to mine.

I live in Arkansas at the moment and am a worship leader for my church. I am 17 years old. I have had lupus for about 4 months now. Or at least that's how long I have know about it. I have suffered from unexplainable medical problems for years. Ever since an infant I have had febrile seizures. And still have them to this day. When I was 11 I suffered from contractions in my hands causing both of my pinky fingers to curl under for over a year. I spent over 6 months in splints. Luckily this problem over time was able to be corrected. I also suffered from sever acid reflux. At 15 I had temporary poralysis in my right are that lasted two weeks and went unexplained. Around this time I started noticing a pop in my hip every time I would walk. At the time I was young enough to ignor it but by the time I was 15 it was unbearable. It hurt horribly with every step. After about a year of different doctors and 6 misdiagnoses, I had two injections in my hip that did no good and had a Tendon relise. But the problem is still here. The doctor sent me to therapy where my theripist couldn't understand why my whole body was so weak. Back about 5 months ago I started getting sick. All the time. I was never well, and even when I was I would run fever. I am always exhausted. I didn't understand why I couldn't do what my friends could. I was very limited. I am also the oldest of 6 kids who are all homeschooled. I couldn't help hardly at all for always being sick. I also struggle deeply with depression. Not having anyone who truly understands the constant pain is hard. Having this community has been a very encouraging thing for me. God has also brought a wonderful man into my life now who has been amazing with all of this. He even helps me research treatments for all of this. And I am excited to say that he just proposed and I will be moving to Texas next year to get married. God knew just when to send someone my way. It's been a long journey, and I feel like it is just beginning but now that I have this community of friends who understand I feel less alone. God bless you guys.

Jan 31, 2015 2:40 PM

Hi Everyone, I feel better than yesterday. I guess it have something to do with the weather because today the weather is fine. I went to my orthopedic doctor Wednesday and he said he wants to do surgery on my back because he said my lower back is getting bad Oh my God help me throughout my pain in your name. AMEN!!!!

Jan 31, 2015 2:53 PM

"Every action has a reaction, every choice has a consequence, " I always told my children. I grew up in a dysfunctional family, the youngest of 4 children. At the age of 5 my dad left us. My mom had no idea of how to drive but she taught herself. She struggled to raise us, working multiple jobs. We ended up living with her parents except when they'd get mad and shed leave, taking us with her. Mom had a problem with alcohol, she couldn't handle it. She did the best she could, raising latchkey kids, but the older ones always got us into mischief and trouble. We lived in housing projects, on food stamps, when we weren't living with our grandparents. The older I got, the worse mom drank, and the uglier and more violent the whole atmosphere was. We changed houses & schools constantly, never finishing one year anywhere.

My dad remarried & adopted his new wife's kid. They lived in a nice house on a lot of land; the "uptown" living. We rarely saw him except Christmas & summer vacation. At 12 I went to live with my dad, for many reasons. I finally lived in a stable & nonviolent home. I was just an average kid living with a fancy family. I felt out of place, at both homes. I finished middle & high schools in one town. After I graduated my dad got transfered to the city. I hated the idea because we lived in the country, and I'd lived in the city with my mom.

After 2 years in the city I met my husband, and we married 3 months later from the day if our first date. We've been married 34 years nearly. Our first home was a 700 sq ft trailer, and we raised 2 daughters in it, giving them the "master bedroom"... there was only 1 bathroom. Lol In our 20th year the MH park closed down so we bought our first house, a single brick ranch.

I had miscarried my first pregnancy and stayed sick the first 4 moths the same cond time. So I decided to become a stay at home mom and for 15-16 years that was my life. I had problems with the third pregnancy too, but we were blessed with 2 very healthy daughters, three years apart. Remember my first statement above... I had my tubes tied with the second daughter, and I began having female problems. Seven years later the doc talked me into a hysterectomy (partial, left my ovaries). Two years later the girls were in mid & high school, so I went to work part time. They no longer wanted me as " room-mother" & certainly not "chaperone." Teachers & principals loved me because I'd call out a misbehaving kid in a second... One shot a bird at me (not thinking I'd see) and he got to ride all the way to six flags & back as my seat mate! Lol Anyway I returned to work as a bank teller and decided I did not want to do that the rest of my life. So I started looking into returning to school. Then I slipped on liquid and fell flat of my back at work. Young, trusting, & naive, I didn't hire a lawyer because I was afraid I'd lose my job. During a 17 month period my mom & her dad both got sick, and I lost them 5 months apart. Mom was only 65. My boss chewed me out for missing so much work, so when my grandfather's estate was settled and I (executor) settled my moms estate, I quit my job and returned to school. I graduated 3 years later, and that very year I had 2 more surgeries; I'd already had 5; tubaligation, hernia, blocked saliva gland, hysterectomy, cervical disc rupture-fusion (2x), oophorectomy.

I went to work at my first job as a coder, 2 wk post op with staples still in my abdomen. I went on to work 4 more jobs over nearly 8 years in Health Information. During those years I had a toe surgery, sinus surgery, and then the last in 2010 (5 surgeries in one; 10 cm tumor, endometreosis & scar adhesions, another hernia, appendix removed, and bladder hematoma required stents in ureters). I've had IBS since 1980s and osteoarthritis too. Now I have the fibromyalgia, osteopenia, Sjogrens, Raynaud's, migraines, hearing loss & tinnitus, DDD/DJD, chronic back (C/T/L/S) disc problems (bulges, tears, etc), TMJ, asthma, allergies beyond the norm, vertigo, motor skill deficits & imbalance issues, pelvic floor dysfunction, pelvic congestion syndrome, and last dementia (or something similar) & shortness of breath & chest pain/palpitations/premature atrial contractions. Oh, and depression & anxiety & insomnia.

Have I lost my mind? No. Do I give up? No. I may not have all my body together... But God surely has me!!! I still have things in my mind to teach my grandchildren and children. They call me often. I can't physically be there or do what I use to, but I can still love, laugh with, and pray for them all. Just as I pray for each of you. God is #1 in my life, and my husband is #2. He knows that and he is a wonderfully devoted husband and father. I have been blessed to live poor and rich. I choose to remember where I've come from and not be too proud to forget others too. My husband and u aren't rich, were mid-class average. But my medical needs make it hard. We see to our needs, not our wants. I don't indulge wants in others around us, and I won't let their needs go unmet if we can help. I've given up hiking & vacation trips, traveling to see long-distance family or friends, sewing, cross-stitching, and gardening. But those are not who I am, they're just things I use to do. I am a caretaker at heart, but can no longer take care if others. I've always been the "peace maker" in the family, but the drama is too much for my mind to handle anymore, not to mention life is too short for drama. I try not to judge anyone else, and sometimes its hard. But I feel everyone has both good and bad within them. And as I've always said, "every action has a reaction, every choice a consequence. If you do something stupid, or mean or irresponsible, then face it, accept the responsibility & consequence, then move on." I am a Christian and God is who keeps me going. If I miss my Bible study time with Him, I feel lost, every day. I believe His words are true. This is who I am.

Jan 31, 2015 3:55 PM

Hey Profiler, I am glad you thought of this!! First, I'm so sorry for what ALL of you have been through. Your Mother was so unkind to say what she did and I think you are a kind, compassionate and wonderful man.
I use the name Alwayzinpain but my name is Kathy and I'm going to be 50 years old in November. (By the way Happy Birthday Profiler!!). I live on Long Island and started with pain in my left shoulder in 1992. I've since been diagnosed with Degeneraltive Joint and Degenerative Disc Disease, spinal stenosis, long thoracic nerve palsy, thoracic spondalytic Myelopethy, sciatica, fibromyalgia, complex regional pain Syndrome, fractures in my lumbar spine, cervical degeneration, cervical laminectomies from C2 through C7, I have anxiety, depression and have had 28 surgeries during this time. It's exhausting and I have to say that things could be worse. We just found out the day after Christmas that my Sister has Ovarian Cancer and I've been taking her to get chemo. I am
Very proactive in my care and I also thank God that I found this group. What great people I have met here. When I worked, I started a job at the end of school in the local TV repair place. I was there for 14 years. Then after being laid off and not being able to find a job for almost 2 years, I got a job with a health/life insurance brokerage. I was able to work there 10 years and then the pain got too bad and I had to stop and go on disability. I'm still a licensed life insurance agent and I love animals (all) and have had many. Right now we have 2 dogs and my ferret. I've had exotic birds, lizards, snakes, hamsters, guinea pigs, hedgehogs, horses, etc. horses ALWAYS transport me to another dimension. They bring me peace just puting my hands on them, running a brush over them or just being around them. They are a part of my soul. I love to read but sometimes it is difficult to hold a book because it hurts my hands and wrists. My pain management doctor is fabulous and I've been with him for 18 years. I wouldn't trade him for anything. Well, I think I may have rambled... I'm kind of foggy today, my pain level is real bad and I haven't had any Meds since last night. (I skip doses if I need to take someone in my family somewhere). So I just took it. I'll have to re-read this and perhaps amend the post after the meds kick in. Hope you are all having a peaceful and less painful day.

Feb 01, 2015 8:35 AM

Hey hey hey ladies and gents! Well, you can probably guess it but my name is Jessie. I'm 38, and a Gemini 😉. Life has been really really good to me except for chronic pain, stomach issues (IBS), bad sleeping, body fatigue, and memory issues associated with " the fog" that seems to be getting worse and worse. This all started around the age of 21. I feel as if it has gotten worse, but mybe as you get older it's harder to handle it? I was diagnosed with Fibromyalgia after seeing lotttttssss of specialists at the ade of 25.
I have my masters in social work and have my own private practice where I see children and adults. I live in the great frozen tundra the state of Maine

Feb 01, 2015 8:39 AM

Oppssss - also I am married and have a lovely wife (yes wife! 😉) who is extremely supportive as are my mother and many friends. No kids.... Never really wanted any but I enjoy kids! I am not sure where my life is going as I have to keep cutting down on my caseload due to my symptoms.
I might do something with my art work - like do a copy of shoes or fairs. I may do a group or two in my practice around pain management and support for people who have chronic fatigue or fibro as I feel like I have really tried to educate myself around this subject.

Feb 01, 2015 8:41 AM

That was "a couple of shows" not "a copy of shoes"! Haha

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