Preface: this turned into a long one.....read as much or as little as you like.
Ok, ok, so i'm not as good about updating the blog as I want to be. Its hard for me sometime to even put my feeling into words somedays. Somedays, i'm in too much pain to sit up in bed to type on a computer. Excuses aside, here I am. So lets see whats happened lately....On September 29 marked my official "6 month leave" from work so I applied for long term disability. They are still in the process of reviewing my claim and I am still waiting to hear whether or not I will be approved. Of course the doctors didnt fill the form out correctly the first time so they had to resubmit it which has lengthened the process. There shouldnt be any reason why I'm denied but I'm still nervous and just ready to have the weight lifted. I completed my post op rehabilitation therapy but was still having pain so my therapist referred me to a different group of physical therapists still within vanderbilt that practice a different kind of pt called myofascial release. Its kinda a big long word that mean massage. Basically in my case, i have so many muscles and muscle groups that are literally tangled in knots because they are so tight and have been for long. So myofascial release uses manual techniques to get the muscle groups let go and relax. It usually feels good during but afterward i experience pain because it changed the dynamic and the make up of that whole area and my spine is having to learn to support itself more. The night after my first real session, I actually ended up in the ER. This would be visit #4 for those keeping count. We went to vanderbilt this time and had to wait a couple hours, but once i got back to a room and they looked up my history, they treated my wonderfully. We ended up staying for about 7 hours and I was given pain medication through and IV as often as I wanted till I was comfortable. We got home at 5 30 the next morning. Needless to say it was a long night.
Two days later I FINALLY got an appointment with a new pain specialist, Dr. Sun who is not associated with Vanderbilt. He also was wonderful. He said that his first priority was to get my pain under control with the use of medications. He added some, increased some doseages of others. I wont mention specific names of medications but I'll just say they are very strong. I have one medication that last 12 hrs that I take twice a day and I have another that I take when I have "breakthrough pain". Then I even have another that I take when I am having my involuntary jerks and spasms. I'm still on the nerve medication twice a day as well. My bathroom looks like a pharmacy at this point. The long term plan is to try another round of injections and minimally invasive procedures over the next couple months. If that doesnt work, we are looking into what is called an implantable intraspinal stimulator and/or implantable spinal pump for medication. The spinal stimulator is "the pacemaker for pain" and the doctor said he has good results with it his failed surgical patients. Basically what it is is they implant this device in my lower back and run wires with electrodes on it up into my neck. The electrodes will give gentle electrical stimulation to my nerves which will block my nerves from sending pain impulses. My next appointment with Dr Sun is October 23, so pray for all these little procedures I'll be having and for my family and I as we decide on the spinal stimulator and or pain pump options.
Since I've been on the new medication protocol, it has definitely helped. Overall I am taking less medication for breakthrough pain but the daily medication is very strong and I do have days where I feel kinda loopy. I absolutely can not drive on these medications so I am back being stuck at the house most days. My wonderful husband drives me to all my appointments each week, usually 2 or 3. I can not even express in words how amazing Harrison has been. As a caretaker, as a husband, as a friend, as a driver....everything, he has been my rock and the main reason I keep fighting through this. I can't imagine having anyone else support me any better than he has.
I also have had some amazing friends who have been very supportive as well but with my friends, my family, and Harrison, i deal with alot of guilt that I am putting my loved ones throught this. I feel guilty that Harrison immediately after saying "I do" had to deal with the "in sickness and in health" part. I feel that I am not able to fulfill his needs as his wife right now so I struggle alot with that. With my friendships, I also feel that I cant reciprocate much right now. I feel that I have been stripped down to very minimal version of myself. I feel like part of my struggle comes from the fact that with my job, I felt I had so much purpose. I was saving babies, I felt so much worth and so much that I was leading the life God planned for me and I was fulfilling His calling for me. Slowly over the past 6 months, i have lost alot of that self worth, value, and purpose. So when my wonderful friends offer to help me, I have a hard time even saying yes because i dont feel like I am worth them wasting their time and putting the energy into being my friend right now because i dont feel like I dont have alot of positivity to add to the friendship. I apologize for going so deep into this. I didnt expect it. I never really know what to expect when I start blogging these days. Please pray for me as I deal with all these emotions and feelings. I do want to say though that I am seeing a therapist as an outlet to be able to talk about these feelings.
Today I had a fairly decent day and was able to go to a baby shower for a girl that works in the NICU. I was very nervous walking up to the door and I just said a little prayer that it would be ok. I didnt know how I was going to be received after not seeing these wonderful girls in 6 months. Everyone seemed glad to see me and asked how I was doing. A few people seemed genuinely concerned and I was able to talk to more in depth which was nice. At times it was bittersweet when they would mention happenings at work and I felt a little out of the loop but that was minimal. We've had alot of girls at work have babies in the last year so there were several kids there ranging from over a year down to only a few months so it was fun to just watch all the kids. That made me happy.
Another joy that I have had the past couple weeks is we have some friends who had a baby back in August and they litterally live in the neighborhood across the street from ours. They are fellow UT fans and we have goten together with them several time to watch the games. Once I see that sweet baby boy, I usually hold him till they leave 4 or 5 hours later. I think the parents love getting a break for a few hours. He's still little and fairly light and so it doesnt hurt for me to carry him around. When sitting, I grab a pillow or something for support and I just hold him and love on him for hours. It give me so much joy and brings me so much happiness to just be around a baby, even a crying one. There is nothing better than having a baby lay on your chest and nuzzle up to your neck and have them fall asleep. Feeling that precious heartbeat and their breath rise and fall as they sleep is the best feeling. Can you tell that I want to be a mother more than anything? God is a great provider and not only has the baby given me joy but we have also been able to become better friends with a wonderful Christian couple.
This has turned into a long post and for that I apologize. Again, feelings come over me and somehow I have to vocalize them. Nighttime can sometime be hard for me. My poor husband is always exhausted so he sleeps soundly but I usually only sleep for an hour or so at a time because I often wake up because of pain. The silence and darkness leaves me no escape from my thoughts and feelings. My prayer tonight is that I can become more excepting of help and more willing to reach out to some amazing people who have offered their help. I want to be able to call these great people and say "hey, i'm having a hard day and could use a friend." Right now, that is so hard and painful for me to do because of the guilt I deal with. I pray that God can take that guilt and replace it with feelings of worthiness and self value. I also want to be a better friend, wife, daughter, and sister to those that love me and have helped me through this and somehow, someway be able to reciprocate to these amazing people my love, appreciation, and gratitude. These are my prayers.
Thanks for reading.