Searching for someone close to my age....

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Hi!I am new on here, per Bonnie; she's another fellow flatback/revision sx patient. Our physical therapist "hooked" us up because up until I just spoke with Bonnie last week I really haven't understood what has been going on with my back for over a year now. I've tried the cortisone injections and facet joint injections, these have not worked for me. After seeking medical advice from an Ortho. Dr. at Duke last Oct., he basically told me that I have 2 degenerative discs, at L5-S1 and would need to have surgery again to fuse me completely from L5 to my pelvis. I have Harrington rods from approx. T4-L4, I've never asked from where to where am I fused but need to . I also am not aware of the degree of both my curves pre-op or post-op. I need to check into this as well. I was 15 when I had the surgery back in Dec. of 94' at Pitt Memorial Hospital in Greenville, NC by a Dr. Harvell. If I knew what I know now (thx to Bonnie!) I would have had my surgery done by someone more qualified to perform these surgeries. But I know you cannot harp on the past, what's done is done and now I have to begin my journey of planning for the revision surgery one day. For now, until then I will just have to hope that Bonnie's pain management Dr. can help me too! I have always had some sort of pain since I can remember, whether the quote on quote lower back pain that feels like your back and muscles are just tired, tight and sore most of the time or now the excruciating pain that pretty much comes and goes as it pleases and can be at a 2-3 during the day and shoot up to an 8-9 in the evening after a day of "normal" activity (i.e. school, work, cooking dinner etc..). This past year has been a living hell! My current pain began last April or May 08'. This was unlike any pain I had experienced with my back before. I couldn't sit down for more than 5 mins without standing from a seated position and this sending a jolt of pain up the right side of my lower back. The pain is so intense and often catches me off guard that it can make me buckle my right leg and yell out in pain (like you yell/scream when someone scares you because you weren't expecting their presences) At times I experiences this pain when getting up from the toilet, walking, using steps, or at times when I may move an upper extremity that may cause some spinal rotation (what rotation I have ) Other than those specific times it pretty much jolts me any other time it pleases. My fiancé has to literally help me stand and I have him place his hand on an area on the right side of my lower back where I have a lot of crunching which gives him the "hebe-gee-bees" sp? because when I stand up it just crunches, pops, & grinds, especially when my pain is at it's worse. It also does this at times when I walk and can barely stand up straight from a seated position. He literally has to help me stand upright at times. I have gotten to the place where I walk with a guarded stride; I'm not even able to walk with a normal gait anymore because I'm so afraid that this pain will jolt or because at times I just simply cannot walk normally without having pain. So now I've just gotten so use to walking without taking normal steps, completely shifting my weight from one side to the other and some days I can't even walk for exercise because it will only cause me more pain. I need to strengthen my core, loss about 30-40lbs, and just overall get stronger. But some days, more often than not it seems impossible to do all the things I need to do to reach these goals per my PT. I've been in PT for over 6yrs now and it only seems to be a band-aid for now. As far as any numbness or tingling in my legs or leg pain, I only experienced these symptoms for a few months and they just went away one day and haven't yet returned. I use to have a lot of problems with my pelvis and hips getting out of alignment and a PT I use to see would have to realign them. This hasn't happened in quite sometime. When my pain is at its worse I usually just have to lie down with a pillow between my legs because standing and walking only makes it worse. I'm currently a full-time student earning my degree to become an Occupational Therapy Assistant. Some question my ability to pursue this career due to my back. Even my current PT asked me one day, didn't I want to do speech therapy instead. I'm determined to be optimistic about pursuing this career. There are areas of OT that I should be able to work in, such as hand therapy, even though my heart is to work in pediatrics. I worked for 15yrs with children, about 7yrs of that in daycare as an infant teacher. I know, not the best occupation for someone with back problems, but it's what I loved and all I knew. Towards the end of my daycare career I did have to get doctors notes about me not lifting over 30lbs. I'm hard headed and often would lift anyway. I tried wearing a back brace when lifting, which helped some. Thankfully I no longer work in childcare other than the occasional babysitting job and now know that I never will be able to work in that profession ever again. I know work part-time as a Habilitation Technician for Maxim Healthcare. Basically I provide community support services to the mentally and physically handicapped population in my area. On top of all my health problems, my fiancé was diagnosed with Sjogren's disease (pronounced show-grins) last year after 12yrs of doctors and specialist not being able to diagnose him. He agreed to go to Duke last year when I wanted to go for my back. Basically, in a nutshell he deals with chronic strep throat several times a year, chronic nose bleeds, holes and tissue deterioration in his nose and throat which they think maybe a type of congestive tissue disorder, and he also has an immunodeficiency disorder where basically he has a suppressed immune system and his body has a difficult time fighting off germs. For example, you may have what we call the common cold and if he is exposed to this cold his body will immediately react and turn it into strep throat. Due to this we live on the beach at Carolina Beach, NC. His nose and throat need the moisture and humidity that the weather and ocean provide here. We rent here and of course it's pricier than living say in Wilmington, NC more inland. But his life depends on it and no price tag is worth his quality of life. Up until Dec. 07', I was living in Raleigh, NC where I'm originally from. is from NJ and had been living in Carolina Beach for about 2yrs, but he wasn't near the ocean. He has improved since we moved closer to the ocean, but basically all he can do is manage his symptoms, as there is no cure for this disease. Everyday is another painful struggle for him as well. When his throat is inflamed he says that it feels like he's swallowing glass. I couldn't image this! We are both very supportive of one another and often joke that the two of us together with our health problems are like two peas in a pod. I threaten to put him in a bubble! At any rate this is my story, sorry it's so long. I hope to meet others finally that empathize with what I endure on a daily basis and that understand my swarm of emotions in dealing with this long, painful journey. I'm open, honest, and ready to make new friends! I am so grateful to have crossed paths with Bonnie, she is truly an angel heaven sent to me and I am thankful for this forum and all of you here to listen, share, and let go together. Blessings, April Wheeler