Step down #2 and #3

A couple of weeks ago, I made another switch on my pain patch from a dose of 50 to 25. I wasn't too concerned since the first step went pretty successfully. I had been planning a trip down to birmingham for labor day weekend for months because my best friend who is living in L.A. was coming in town for a friend's wedding and I COULD NOT miss the opportunity to see her for the first time in over a year. Harrison really had his heart set on staying in town and going to the UT football season opener so I was going to have to make the drive myself. Well, i planned ahead and started taking a steroid pack the week of so that hopefully I would feel my best and be able to be active and enjoy the weekend as much as possible. Yet, I was still apprehensive about the 3 and 1/2 hour drive down there. Luckily, God worked it all out and Frances' (Harrison's sister) boyfriend Jeremy (now fiancee!!! YAY!) ended up going down that weekend as well so he rode with me. I did drive the whole way down there which is the LONGEST I've driven in 2 1/2 years!! I was pretty proud of myself. Thank God for steroids!! I wasn't feeling good for the drive home Monday afternoon so thank God for Jeremy.

Great Friends

I had an incredible weekend with all of my birmingham college friends. It was so refreshing to be with old friends who know, love, and understand you no matter what. Despite tears or hard times that any of us are facing, we are all there to support each other no matter what the circumstances, no questions asked. It was a much needed trip to spend time with wonderful friends, talk to them about whats been going on, have them listen and support me, and recharge my batteries and prepare myself mentally for the next step down on my medication when i returned home.

So literally within minutes of getting home around 10pm, I changed my pain patch to a 25. Unfortunately, this step has not been as easy as the last one. The first 3 or 4 days I spent mostly in bed with noticeably more pain, unsure if it is related to my activity level over the weekend, the change in my dose, or most likely, a little of both. I've also been experiencing a new symptom for the past few months...intense back pain. For the past few years, my pain has always been isolated to my neck. Well on the way home from our beach trip a few months ago, my middle back started hurting and my muscles were burning very intensely to the point that i couldn't even bend over to unpack when we got home because every time i did, i felt like my back was on fire, like that feeling when you get when you work out a certain muscle group till you cant stand it anymore, only worse. Early on I just attributed it to the 7 hour car trip and the fact that the mattress at the beach house is much firmer than my mattress at home. But after 2 months, I'm still having a lot of pain, even though I am getting massages every 10 days or so and taking muscle relaxers pretty much around the clock. At my last pain doctors appointment last week, I talked to my Nurse practitioner about it and she said it could be something that was already there that the higher doses of medication covered up, something new, or just related to withdrawing. We talked about doing a round of X-rays and MRIs to see whats going on but are going to see if I can wean off the pain patch and see what happens. I plan to wean down to 12.5 for a week or so then come off so hopefully by the first week or so of October, I will be off the pain patch. I'm ready to just be done with it and cross it off the list of things that need to be done before I can focus on what I want most right now...a family.

This has been an extremely difficult phase for me as a watch SEVERAL of my very close, dear friends and their expanding bellies and listen to their experiences of being pregnant. THIS DOES NOT AT ALL MEAN I AM NOT EXTREMELY HAPPY FOR ALL OF THESE DEAR SWEET FRIENDS!! And I hesitate to even talk about this and post this because I don't want to hurt any of my friends, but I also feel that I need to be honest about what I'm feeling. Its just difficult because right now, things are out of my control and I do not have a peace about it. In a way, I feel left out. I feel like I am not as connected to my close friends and they are all even more connected because their babies will be born within weeks or months or even days or each other. If I were in the position where Harrison and I made the mutual decision that we just aren't ready yet or now is not the right time, then I feel like I would have a peace about that decision because it would be my decision. Although i guess, who I am trying to kid here, its all God's plan anyway and I'm not in control of anything really. Being a mother is always something I have felt deeply in my heart for as long as I remember, and I just want something to finally go the way I planned. Again though, its not my plan in the first plan but every step of the way since 2 months before we got married, we wake up to the unexpected. Nothing has gone at all the way we thought it would and we have face many obstacles the past 2 1/2 years. Maybe its selfish of me to want things to go smoothly, or to want something good and happy to finally happen for us, even though i know we are blessed beyond measure.

I hate even talking about how i feel about this publicly because again, I don't want to discount the happiness and excitement I feel for my friends. I love all of them and I know it has to be such an amazing time and of course you want to talk about it and express your joys, hopes, fears, and everything you are feeling. I just can't help but ask God, "When/if it will ever be me Lord?" and "What is your plan for me in this life?" A few years ago, I thought i knew the answers. I thought I was meant to serve God by helping, treating, and caring for the sweet, innocent babies that are brought into this world sick or early, and being a support system to the parents. But now I don't feel like i know the answers. I don't know the purpose for my struggle with pain... at least not yet.

One step forward...

I've been eager to write this entry for awhile but i wanted to make sure that I didn't do it preemptively. The heavy medications I am on for my pain are not something I talk about a lot. There is definitely a stigma about being on narcotics and while I know that everyone who knows, loves, and supports me, thoroughly understands the reasoning behind being on ALOT of medications, it is still something that I do not open up and talk about often. I have been on narcotics for over 2 1/2 yrs. I have tried several different medications and finally found a regimen that seemed to work fairly decently for my pain control. Last summer, i was doing very well and was wanting to start the process of weaning off the medications. Well then the unexpected happened and I had to have an unplanned laparoscopic female surgery to remove what was thought to be endometeriosis. So after stepping down on the dose of my pain patch once, I was at a stand still till after I recovered from my other surgery. Then in late fall, I hit a wall and from December- May visited the emergency room 4 times. Obviously I wasn't getting good pain control so I switched on my breakthrough medication. That did seem to help give me better control.

Still the thought of weaning off of my pain patch has always been something in the back of my mind and a step I knew that inevitably would have to take. Yet, the thought of the pain being worse was something I couldn't bear to think about. Every time i would talk about it or the potential options for the process, I would break down because of how much anxiety and panic the thought of more pain caused me. I was presented with 2 options- 1) go into inpatient detox in a hospital setting for 5-7 days or 2) Go to a chronic pain rehabilitation program (not Rehab) but a specialized program of which there are only a few in the country and i would be gone for 3-4 weeks. Neither of these options felt right for me, so after a lot of prayer and conversations with Harrison and my family and a lengthy discussion with my pain management doctor, i created my own plan. We decided that after our beach vacation, i would start a slow, step down process of weaning off my pain patch. Last week I went from a dose of 75 to 50. I was apprehensive, not knowing how my body would react but it went ok. I have had trouble sleeping an a little bit of nausea but not much else. The plan is to continue to step down each month so at the beginning of september, I should go down to 25, then either to 12.5 or zero depending on my progress. Again, I don't want to get too ahead of myself because i dont exactly know how the process will go, but for right now, this feels like the best decision for me.

I do not like not having control over what is going on with my body and my health. I would love to be off my pain patch by Thanksgiving or Christmas but again, its literally one step at a time. Hopefully doing this slowly, my body won't be pushed into the horrific side effects of withdrawal. My body will gradually get used to each new dose.

Other things going on recently...I have found out that SEVERAL of my friends are expecting babies. While I am beyond thrilled for all of my friends and wish them nothing but health and happiness, I can't help but ask when will it be my turn. I feel like a lot of my hopes and dreams are slipping farther and farther away, and honestly, its been really hard to be positive lately. For 2 1/2 yrs I've been dealing with this journey of uncharted territory and I'm just ready for a break. I'm ready for something to go the way I planned. Nothing in the past few years has gone the way I expected or planned. I know God has a better plan for me than I can imagine for myself but I find myself questioning it all and where my life is going. Where will I be at Christmas? Will I be off my pain patch like i hope to be? Where will i be in a year? Will I EVER be able to finish graduate school? Several friends and former co-workers graduated from nurse practitioner school at Vanderbilt over the weekend, and that was a hard pill to swallow. I want to accomplish all the goals I have for myself, but I just dont know how or when this is going to happen. But most of all, I want to be a mom. I worry what all these medications are doing to me and my previous history with female issues if it will ever be possible. I can only hope, pray, and trust in God's love and faithfulness and his plan for me.

Please pray for me while i continue this process of weaning off the medication and pray that I can find comfort and peace in where God is leading me on this journey. Thanks for reading.

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.

On being incredibly blessed..

Dear Friends

While I usually use this blog as somewhat of a journal and a way of expressing all the emotions that I experience thru this crazy rollercoaster, I'd like to take the opportunity to say how incredibly blessed I am, despite my medical issues and pain. For instance, my mom came over today and cleaned my whole house from top to bottom since i've have spent the past 3 days in bed with bad pain. I enjoy cleaning (oddly enough) but housework is something i cant really do anymore, especially more strenuous stuff like mopping and vacuuming. I have the best parents in the world... I really do.

My mom and dad have supported me since day one of this journey. My parents have both been extremely involved in everything, from going to important appointments, to fixing meals for us, to running errands for me, to driving to me to appointments...the list goes on and on. My mom spends hours on the internet researching the newest pain treatments, the best doctors, dietary changes and supplements, and anything related to chronic pain.

In addition to all this, they are an extremely strong source of emotional support for me. I also have wonderful, loving, supportive in-laws. Harrison's parents sent me flowers and cards of encouragement all the time. They are in constant prayer for both of us as we deal with the unexpected. Even though they are now in Nashville, i feel their love and support daily.

I have a bad habit of feeling that if i talk about what i am going thru too much to people, it will burden my family and friends, so i tend to keep my emotions to myself most of the time which usually ends up in me reaching a breaking point and breaking down. Despite the fact that i keep a lot to myself, I know I have amazing friends all over the country that love me, support me, and pray for me. I am trying to work on reaching out to people more and opening up to friends that i trust and that offer to be there for me. I definitely need all the love and support I can get!

And last but most important, the love of my life, my best friend, my rock, my everything...Harrison. I always thought our love story was interesting how we dated, broke up, stayed friends, got back together, endured a long distance relationship for almost a year and then us both living in Nashville and eventually getting engaged. I knew how much timing and especially God's timing had to do with us getting together and especially now, looking back, getting engaged and getting married (we got married 6 weeks after my pain same back...coincidence??) God most definitely hand picked my husband as my perfect other half. I have never met anyone who is as compassionate, understanding , and loving as Harrison is. He works a full time job, yet he cooks dinner for me almost every night and will bring me my meals in bed when i cant get out of bed. He always comes home with flowers or little surprises. He will do anything to make me feel better. He will wake up in the middle of the night when I'm having a bad night and will scratch my back, or get an ice pack for me. He always puts me first and always stops me if he thinks i am overdoing it.

As I have gotten back into photography, Harrison has been so supportive and encouraging and takes me places and plans little photography outings. He is so sweet and loving. I can not imagine my life without him by my side every step of the way. I know everyone says this but I truly am the most blessed woman to have found my perfect companion for the rest of my life. I love him with all my heart.

To all who read my blog, I am blessed to have you in my life because by reading this, you are supporting me and for that, I thank you.

On being in pain...

So I have a thought....with all the emotions i've been going thru and dealing with lately, its been hard to separate everything and figure out which emotion is actually leading my feelings. Things have been remarkable difficult lately. This time of year is like the "anniversary." So i'm going to try to break down my feelings by each emotion to try and sort through everything. While doing this publicly may be something i decide against down the road, for now, this is an outlet that works for me.

Right now, this is my bedside table...it consists of all my medications for pain, muscle tension, muscle spasms, sleep, anxiety, topical creams, etc. My bedroom is my sanctum. I have everything i need in my bedroom at my fingertips. My floor next to my bed has my heating pad, my books, bible, journal, and magazines, and computer. I have my tv, my dvd player, FRIENDS, Gilmore Girls, and netflix to keep my occupied or distracted (whichever I need at the moment).

Pain is such a complicated process...especially chronic pain. At a moments notice it came become so severe that moving is out of the question and i automatically access the quality and characteristics of my pain to determine if its bone pain, nerve pain, muscle pain, or all the above. I have to figure out what medication will best work for the type of pain I am in. This process happens at least once every day...If i'm lucky it will skip a day or 2 if i'm really really blessed.

I dread the night time because it can be the hardest. Its when the world gets quiet and the distractions of the world fall away and i start to think....i mean really think about my life and my pain. I'm hardly if ever comfortable. Sleep is a rarity...at least the good, deep, restorative sleep that makes you wake up feeling rested, happy, and ready to face the day.

I hate relying on all the medication to function or get thru each day. I worry about everything that I take...of course i never take more than allowed and never take it all at once but it scares me. Being in pain scares me. Not knowing when or if the pain is every going to go away absolutely terrifies me. I'm trying everything within western and eastern medicine to fight the pain. Right now i'm focusing on massage therapy. I really like my therapist and after my massages i usually feel better for a couple days but i wish it would last longer. I've been going every 2 weeks for the past couple months so i'm hoping that maybe one day it will last longer. I think i'm also going to start going to go back to acupuncture, which i've done before but then reached a plateau where the cost wasn't outweighing the benefit so i stopped going last fall. I've also been to this other place of western healing that works with a specific type of heat called far- inferred heat the deeply penetrates the body and promotes healing.

The weather we've been having in Knoxville lately has really messed me up. A few weeks ago, spring was in full swing and it was gorgeous. I was starting to feel better but now its been cold, damp, and all around yucky and gross again which makes me feel terrible and have more pain in my neck and joints..knees especially.

Well to offset this cold and hopefully help my pain, I'm going to go soak in a hot bath for a while and read a book. Thanks for reading. Lots of love to all those out there who continue to support me.