The long waiting game and the unknown future...

I've been trying to write this blog entry for over a week. Its been hard, mostly because i wish i had better news to report, and secondly because i get really emotional every time i start writing. I've edited and reedited so I apologize if some of it didn't get properly edited for all you grammar correctors out there.

As many of you know, I had a pretty big test a few weeks ago at Vanderbilt that would show pretty much everything in my neck. Well three weeks later, an email, countless phone calls, and conversations with 3 nurses (each of which said they would look into the progress and call me back and didn't) I was obviously frustrated with an medical center I still consider to be my home and am technically still employed by. To make a long story short, I found the written report online through a service to patients called "my health at vanderbilt" late Thursday night (its a online service available to patient. I had checked it before but according to a friend, it can sometimes take a long time for reports to get scanned into this service). Granted, I'm not a radiologist or a doctor but I have enough medical knowledge to read a written report and I saw the multiple the problems that were found. I wept and wept. I called my parents and I still wept. Not with sadness, but with validation and joy that they had FINALLY found something wrong. I guess those 12 hrs before my nurse practitioner called me the next morning, i let my mind get ahead of myself thinking that there would be an easy answer, even if it meant going thru another surgery and things would be better and I would heal and I even dreamt that night of returning to work with those precious babies and finishing my degree, pursuing my dreams, and finally trying to start a family of our own.

The following morning my nurse practitioner called after consulting with one of the neurosurgeons at the clinic. The neurosurgeon went over my results thoroughly had to come up with a decision whether surgery would be helpful or hurtful at this point in my pain journey. The neurosurgeon consulted on my films and didn't think that he could give me a good success rate of fixing my pain by doing another operation, especially at my age and previous history. I had to ask the hard question of "are these problems going to get worse?" That is a fairly good possibility considering these issue have arisen since my last CT a few months after my 2nd surgery (which will be 2 yrs July 15). Of course, that was a big blow and very difficult to hear. Good news is that "i appear" fused, my hardware and screws are in good position. The doctor sees no reason to remove my hardware.

Long story short, the next step is a follow up with the nurse practitioner to go over my films step by step and then consult with Tracy Jackson, the head doctor at the Vanderbilt Interventional Pain Center. This is the same physician who worked tediously and went out of her way to help me in the 2 months before Harrison and I's wedding and who was basically responsible for me being able to walk down the aisle, enjoy my own wedding and go on my honeymoon.

Friends, I've reached a very low point in my emotional journey with all this. I feel very desperate, lonely, sad, and hopeless. I have so many hopes and dreams that I want to accomplish. This life has been very hard for be because I am such a goal oriented person and it pains me emotionally to lay in bed most of of my time, being by myself, 5 days a week (unless I'm with my parents) while Harrison is at work, in pain. The sleep I get whether its during the day or at night is not restful or restorative and I wake up frequently, uncomfortable, in pain, restless, and frustrated. I desperately need prayers, support, and encouragement right now to keep my head up and keep in the fight because there are many days that I don't feel I have the fight left in me anymore. I have been humbled lately by people who have reached out to me. Some who i haven't spoken to in months or years. I've gotten support in places I didn't think I would find it and I know God is going to take care of me and provide the support i need from the people I need. As always, my husband is my rock, my foundation, and the best husband and care taker. I know that God put him in my life for the sole purpose of being perfect for me and when we said our vows and said "in sickness and health..." we didn't know how much that statement would affect us but indeed it has and if this is the life God has planned for us, well, there certainly must be a reason for it. I also have my incredible family to support and love me so I know I am blessed beyond measure in so many ways. These things, my friends, and your support, are literally what gets me through the hard days. As always, thanks for reading.

The search for answers...

Some of your may already know that a couple of weeks ago, after having another horrific acute pain attack and another visit to the ER, my family and I decided that it was time to start looking for answers again. Recently, I have just been managing the pain with medication, bed rest, and massage therapy but the search for answers had been put on the back burner since we ran into dead ends with the rheumatologist and neurologist. I'm still under their care and on medication but neither doctor could explain the pain and all the other symptoms i have ( fevers, joint pain, etc.)

So anyway, 2 weeks ago we went to Nashville to have an appointment with the nurse practitioner at the Comprehensive Spine Center. After a very thorough and positive appointment, she recommended a CT myelogram. Basically I had to get a spinal tap to inject dye into my spinal column and then had a CT scan. The purpose of the dye is to get a better picture because it creates contrast between nerves, bone, my titanium hardware, my spinal column, and my bone grafts. Its been a week and I haven't heard any results yet. I emailed the nurse practitioner yesterday and am going to call on Monday. No news probably means that it came out normal...which is good news bad news. I desperately want answers. All the pain and the needles and procedures, i just want something to show up on one of these tests. Its so frustrating having test after test, 2 surgeries, and everything coming out "normal." It baffles me that all the pain i have is unexplained, no reason, no cause. It makes me want to cry out and scream " THERE IS SOMETHING WRONG AND I CANT TAKE IT ANYMORE." The doctors believe me that i have pain but they just don't know what to do besides trying all kinds of medications.

I'm so tired. I'm so physically and emotionally exhausted. I'm sad. I have missed countless special events, weddings, family function, and quality time with my husband, my family and my friends. I feel enormous guilt, especially with Harrison. I feel that he deserves more than I am able to offer. I feel guilt with all my friendships because I can't be the best friend that i feel i should be because my pain limits what I can do and when.

I've been through this search twice already since this all started. The first search for answers ended up in a surgery that was necessary but didn't fix the pain. The second search ended in medical management which is what I've been doing but its just not enough anymore. I want my life back. I want to go back to work. I miss the NICU, the babies, and the families, and the feeling that I am doing something positive and doing God's work. I want to feel self worth again. I want to be able to spend fun, quality time with my husband, family, and friends.

Please dear friends, please pray for me. I'm having a hard time right now and I need some love and encouragement. Please pray that these new doctors and tests will be able to answer some very difficult questions.

Update

I know its been awhile since I've updated. Unfortunately its been because i have felt pretty terrible the last month or so. Had another ER vista (that makes 3 in 4 months) last Thursday because i had been in unbearable pain for almost 2 weeks and just couldn't handle it anymore. At the ER they gave me a 3 shots of dilaudid and a steroid shot which calmed things down for me this past week. Because of this last episode, we decided it was time to go back to Vanderbilt and get reevaluated.

So on Thursday my mom, Harrison, and I went to Nashville to see an nurse practitioner at the Comprehensive Spine Center. She was actually the first person I saw back in 2009 when my pain came back. She is a great nurse practitioner and is really compassionate. We felt like we had a really good appointment and that she got a really good picture of where things stand and how my pain has gotten worse and harder to control the past couple months. She decided i needed to get another test done called a CT myelogram. Its a CT scan but they inject dye into my spine to get a better picture. This will enable the doctor to see my hardware, nerves, spinal column, bone grafts, etc. It will give a really comprehensive look at my neck. Injecting the dye is like getting a spinal tap so i'm not looking forward to that so please pray for that to go well and for the test to show something or give some kind of explanation to why I have so much pain.

I try everyday to remind myself that God will use this experience and that He has this all under control and that His plan is better than mine. Its hard sometimes on days (like yesterday and today) when I am in pain to remember that.

I personally have been praying for encouragement and support and God has really answered my prayers. I have had so many people reach out to me and give me encouragement and tell me that they are praying for me. People mention how strong I am to be able to go thru this but its definitely not my strength getting me thru...its the prayers from everyone and God giving me strength that gets me thru every day.

As always, if you are reading this, you are one of the people that I am so thankful for. You are someone who encourages me and gives me support and for that, I can not thank you enough. Words are insufficient to express my gratitude. I love you all.