Day One in Support Group

Hi everyone. I am new to this community but hopeful that I can make connections within it for mutual support as we go through DDD together. I have had this condition a long time and the process to diagnosis took a couple of unfortunate turns. I have just had my third spinal surgery in 20  months and am learning to accept my condition; not fight the progression, and live day to day within my "new normal" life. Yes, I have lost a lot so far in this fight for survival. I can no longer do the things I loved to do and am concerned more loss is forthcoming. However, I have a strong faith in God...please don't let this put off anyone reading that I'm going to be spouting platitudes at you as I detest them myself. I am simply believing that God is allowing me to go through this for a purpose unknown to me at this time. I do know that I am a different person with this than I was before and it is a good thing. I am grateful for an incredible neurosurgeon and his team who listen and take great care of me. I am grateful for medical insurance as I am covered fairly well for my expensive surgeries. I have a few friends left...the others fled in terror...ha ha. and they are for the most part supportive but of course want me to be fixed. We know there is no fix for this condition. My husband is becoming more supportive over time. I think the first surgery shocked the poor man. I was so unwell at the time and could have lost my life. I have hope that I will have many good days now, in spite of the pain and the fact I don't know what the future holds for me. I am looking forward to meeting others here and making some friends.  Now, how I feel today: better than yesterday. I have to do my PT for my recent cervical surgery. My nerve pain is less today...what a blessing that is. I have my trusty heating pad beside me if it kicks in again. What I have had done so far is important to the conversation. I had a laminectomy/foraminotomy in early 2012 to remove a synovial cyst and relieve the nerves crushed in my lumbar at L4-L5. In early 2013, I had an XLIF/PLIF with fusion L3-S1 with titanium rod and 4 screws implanted as well as cages with donor bone implanted in disc spaces. In December I had a cervical discectomy with titanium implant at C4-C5 disc space. I have nerve damage with pain daily, a tarlov cyst that was not removed in base of my spine ( not being a concern at this time), and spasms through thoracic spine that come and go at will. I also had both hand done, open hand carpal tunnel surgery between the two lumbar surgeries to determine what was spinal nerve and carpal nerve pain. I am coming along slowly but well since the last surgery. My healing is approximately 8 months for this recent one but another year on the one prior to that. My central nervous system is a little overloaded and my spinal cord has been compromised some due to the trauma. I suffer days of depression from time to time, mostly due to medications now. I am not taking any meds on a regular basis. I have been able to live with a heightened pain daily and am used to it. I do however take them when I know that without them I will enter a pain cycle that is difficult to get out of. I keep copious records of my progression but don't dwell on the future anymore as my spine is going to do whatever it will without my worrying about it. I must focus on my recovery and my daily , even hourly abilities. I am hoping to be able to work on my quilts in the future, completing and constructing them over shorter periods of time. I am no longer thinking I'll be doing this for the rest of my life. I know better. Sitting for periods of time is difficult now, especially with my head in a fixed position. I hope to be able to continue to walk daily as I've given up the long distance running forever...doctor's orders and I am simply unable to run now. Doc says I may be able to do fartleks, a form of speed walking but my left hip is giving me problems now and I need to consult him regarding this. I am becoming more unstable on my feet. *sigh*. I see my doctor in a week. It was to be tomorrow but he has a surgery scheduled so I agreed to change my appt. Being flexible to change is necessary now. I give myself permission to be unable to do things and try not to get too upset about it as it only increases the stress my CNS is under. Okay, enough blather for one day. Update you tomorrow. D.